Atlas - Global Resoursesfor Persons With Intelectual Disabbilities - Eng

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MONTPLAL PAHO/wHO COLLA8OPAT|NG CLNTPL
POP PLPLPLNCL AND PLSLAPCH |N MLNTAL HLALTH
2
WHC Library CaLalouin-in-PublicaLion DaLa :
ALlas : lobal resources or persons wiLh inLellecLual disabiliLies : 2007.
1.NenLal reLardaLion - epidemioloy 2.NenLally reLardaLion - classicaLion.
3.NenLal healLh services - supply and disLribuLion. 4.NenLal healLh services - sLaLisLics.
5.HealLh policy - Lrends. 6.World healLh.7.ALlases. l.World HealLh CranizaLion.
ll.1iLle: Clobal resources or person wiLh inLellecLual disabiliLies : 2007 : aLlas. lll.1iLle: ALlas-lD.
lS8N 978 92 4 156350 5 (NLN classicaLion: WN 300)
World HealLh CranizaLion 2007
All rihLs reserved. PublicaLions o Lhe World HealLh CranizaLion can be obLained rom
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PrinLed in SwiLzerland
Desined by 1ushiLa Craphic Vision Sarl, CH-1226 1honex
3
TabIe of contents
Foreword .....................................................................................................................................................................9
Preface .........................................................................................................................................................................11
The project team and partners ...............................................................................................................12
lntroduction ............................................................................................................................................................13
Nethods .....................................................................................................................................................................14
Procedure ..................................................................................................................................................................14
PreparaLion and validaLion o quesLionnaire and lossary ...............................................................................................14
DaLa collecLion process ...................................................................................................................................................14
DaLa analysis ..................................................................................................................................................................15
Limitations ................................................................................................................................................................16
Findings by themes ...........................................................................................................................................17
TerminoIogy and cIassication ..........................................................................................................................17
PoIicies and programmes ....................................................................................................................................22
LegisIation, protection and pubIic awareness campaigns ........................................................................27
LeislaLion and proLecLion .............................................................................................................................................27
Public awareness campains ..........................................................................................................................................30
Financing ...................................................................................................................................................................31
Covernment benets ............................................................................................................................................34
5ervices for chiIdren, adoIescents, and aduIts .............................................................................................37
CranizaLion o services .................................................................................................................................................3S
Specic services .............................................................................................................................................................39
HealLh services ...............................................................................................................................................................41
Services specic Lo inLellecLual disabiliLies .......................................................................................................................42
LducaLion .......................................................................................................................................................................44
Work .............................................................................................................................................................................46
CLher services ................................................................................................................................................................47
Services Lo amilies .........................................................................................................................................................4S
Factors that had an impact on access to services ......................................................................................49
Prevention ................................................................................................................................................................52
ProfessionaI service providers and standards of care ...............................................................................53
Proessional service providers .........................................................................................................................................53
SLandards o care or proessionals .................................................................................................................................53
Training ......................................................................................................................................................................55
The roIe of NCOs and internationaI organizations .....................................................................................60
Documentation and research .............................................................................................................................64
4
Open-ended comments .......................................................................................................................................66
Low-income counLries ....................................................................................................................................................66
Lower middle-income counLries .....................................................................................................................................6S
Upper middle-income counLries .....................................................................................................................................6S
Hih-income counLries ...................................................................................................................................................69
5aIient ndings .....................................................................................................................................................70
AvailabiliLy o inormaLion ..............................................................................................................................................70
Use o Lerminoloy and sysLems o classicaLion ............................................................................................................70
VisibiliLy o Lhe issue .......................................................................................................................................................70
Sources o undin .........................................................................................................................................................70
Provision o services .......................................................................................................................................................70
Access Lo services ...........................................................................................................................................................71
PrevenLion eorLs ..........................................................................................................................................................71
Human resources and Lrainin ........................................................................................................................................71
Role o NCCs and inLernaLional oranizaLions ................................................................................................................71
Caps in resources beLween counLries ..............................................................................................................................71
The way forward .................................................................................................................................................72
Chane prioriLies o overnmenLs and civil socieLy .........................................................................................................72
Clearly idenLiy accounLable auLhoriLies ..........................................................................................................................72
Close ap beLween needs and nancial resources ..........................................................................................................72
Reconize Lhe role o amilies .........................................................................................................................................72
DisLribuLe resources beLween and wiLhin counLries .........................................................................................................73
Address cusLodial care insLiLuLions .................................................................................................................................73
8uild capaciLy ................................................................................................................................................................73
Nake inLellecLual disabiliLies a public healLh issue ...........................................................................................................73
Lnorce human rihLs and rihL Lo healLh ......................................................................................................................73
References ................................................................................................................................................................75
Appendix 1 ...............................................................................................................................................................77
List of participating Nembers 5tates of WHO, Associate Nembers of WHO,
and areas or territories .........................................................................................................................................77
Appendix 2 ...............................................................................................................................................................S2
List of respondents ................................................................................................................................................S2
Appendix 3 ...............................................................................................................................................................91
AtIas-lD questionnaire .........................................................................................................................................91
Appendix 4 ............................................................................................................................................................ 100
CIossary of terms used in the AtIas-lD questionnaire ........................................................................... 100
5
List of tabIes
TabIe 1 TerminoIogy used to refer to inteIIectuaI disabiIities (percenLaes o counLries by WHC reions) ....... 17
TabIe 2 TerminoIogy used to refer to inteIIectuaI disabiIities (percenLaes o counLries by income caLeories) . 1S
TabIe 3 Diagnostic or cIassication system used in reIation to inteIIectuaI disabiIities
(percenLaes o counLries by WHC reions) ........................................................................................... 20
TabIe 4 Diagnostic or cIassication system used in reIation to inteIIectuaI disabiIities
(percenLaes o counLries by income caLeories) ...................................................................................... 20
TabIe 5 Presence of a specic poIicy or programme in which inteIIectuaI disabiIities are addressed
TabIe 6 Presence of a specic poIicy or programme in which inteIIectuaI disabiIities are addressed
TabIe 7 Departments responsibIe for monitoring or funding services for chiIdren and adoIescents
TabIe S Departments responsibIe for monitoring or funding services for chiIdren and adoIescents
TabIe 9 Departments responsibIe for monitoring or funding services for aduIts
(percenLaes o counLries by WHC reions) ............................................................................................. 26
TabIe 10 Departments responsibIe for monitoring or funding services for aduIts
(percenLaes o counLries by income caLeories) .............................................................................................. 26
TabIe 11 5ources of funding for services (percenLaes o counLries by WHC reions) ........................................ 32
TabIe 12 5ources of funding for services (percenLaes o counLries by income caLeories) ................................... 32
TabIe 13 Repartition of sources of funding for services (median percenLaes by WHC reions) ....................... 32
TabIe 14 Repartition of sources of funding for services (median percenLaes by income caLeories) .................. 33
TabIe 15 Presence and nature of government benets (percenLaes o counLries by WHC reions) .................. 35
TabIe 16 Presence and nature of government benets (percenLaes o counLries by income caLeories) ............. 35
TabIe 17 Access to government benets (percenLaes o counLries by WHC reions) ......................................... 36
TabIe 1S Access to government benets (percenLaes o counLries by income caLeories) ................................... 37
TabIe 19 ResidentiaI services for chiIdren and adoIescents (percenLaes o counLries by WHC reions) ............ 40
TabIe 20 ResidentiaI services for chiIdren and adoIescents (percenLaes o counLries by income caLeories) ...... 40
TabIe 21 ResidentiaI services for aduIts (percenLaes o counLries by WHC reions) .......................................... 40
TabIe 22 ResidentiaI services for aduIts (percenLaes o counLries by income caLeories) .................................... 41
TabIe 23 HeaIth services for chiIdren and adoIescents (percenLaes o counLries by WHC reions) ................... 41
TabIe 24 HeaIth services for chiIdren and adoIescents (percenLaes o counLries by income caLeories) ............. 42
TabIe 25 HeaIth services for aduIts (percenLaes o counLries by WHC reions) ................................................. 42
TabIe 26 HeaIth services for aduIts (percenLaes o counLries by income caLeories) ............................................ 42
TabIe 27 lnteIIectuaI disabiIities services for chiIdren and adoIescents
TabIe 2S lnteIIectuaI disabiIities services for chiIdren and adoIescents
6
TabIe 29 lnteIIectuaI disabiIities services for aduIts (percenLaes o counLries by WHC reions) ........................ 44
TabIe 30 lnteIIectuaI disabiIities services for aduIts (percenLaes o counLries by income caLeories) .................. 44
TabIe 31 EducationaI opportunities for chiIdren and adoIescents
TabIe 32 EducationaI opportunities for chiIdren and adoIescents
TabIe 33 EducationaI opportunities for aduIts (percenLaes o counLries by WHC reions) ................................ 46
TabIe 34 EducationaI opportunities for aduIts (percenLaes o counLries by income caLeories) .......................... 46
TabIe 35 OccupationaI, vocationaI, or work services (percenLaes o counLries by WHC reions) ...................... 46
TabIe 36 OccupationaI, vocationaI, or work services (percenLaes o counLries by income caLeories) ................ 47
TabIe 37 Other types of services for chiIdren and adoIescents (percenLaes o counLries by WHC reions) ...... 47
TabIe 3S Other types of services for chiIdren and adoIescents (percenLaes o counLries by income caLeories) 47
TabIe 39 Other types of services for aduIts (percenLaes o counLries by WHC reions) .................................... 4S
TabIe 40 Other types of services for aduIts (percenLaes o counLries by income caLeories) ............................... 4S
TabIe 41 5ervices to famiIies of persons with inteIIectuaI disabiIities
(percenLaes o counLries by WHC reions) ........................................................................................... 4S
TabIe 42 5ervices to famiIies of persons with inteIIectuaI disabiIities
TabIe 43 Factors that had an impact on access to services (percenLaes o counLries by WHC reions) ............ 50
TabIe 44 Factors that had an impact on access to services (percenLaes o counLries by income caLeories) ...... 50
TabIe 45 Ways to maintain standards of care and practices (percenLaes o counLries by WHC reions) ........... 54
TabIe 46 Ways to maintain standards of care and practices (percenLaes o counLries by income caLeories) ..... 55
TabIe 47 ln-service training for professionaIs (percenLaes o counLries by WHC reions) ................................. 57
TabIe 4S ln-service training for professionaIs (percenLaes o counLries by income caLeories) ........................... 57
TabIe 49 Undergraduate training (percenLaes o counLries by WHC reions) ..................................................... 5S
TabIe 50 Undergraduate training (percenLaes o counLries by income caLeories) ............................................... 5S
TabIe 51 Craduate training (percenLaes o counLries by WHC reions) .............................................................. 59
TabIe 52 Craduate training (percenLaes o counLries by income caLeories) ........................................................ 59
TabIe 53 Domains of NCOs' activities (percenLaes o counLries by WHC reions) ............................................. 61
TabIe 54 Domains of NCOs' activities (percenLaes o counLries by income caLeories) ....................................... 62
TabIe 55 Domains of internationaI organizations' activities (percenLaes by WHC reions) ............................ 63
TabIe 56 Domains of internationaI organizations' activities (percenLaes by income caLeories) ...................... 64
TabIe 57 AvaiIabiIity of pubIications on services for inteIIectuaI disabiIities
TabIe 5S AvaiIabiIity of pubIications on services for inteIIectuaI disabiIities
TabIe 59 The way forward: a summary of issues and actions ...................................................................... 74
7
List of gures
Figure 1 1ermInology used to refer to Intellectual dIsabIlItIes (percenLaes o counLries) ............................................. 17
Figure 2 DIagnostIc or classIhcatIon system used In relatIon to Intellectual dIsabIlItIes (percenLaes o counLries) ..... 19
Figure 3 Presence of a polIcy or programme that addressed Intellectual dIsabIlItIes
(percenLaes o counLries by WHC reions) .................................................................................................... 22
Figure 5 Departments responsIble for polIcIes and fundIng or monItorIng programmes (percenLaes o counLries) ..... 23
Figure 6 Presence of legIslatIon to protect persons wIth Intellectual dIsabIlItIes
Figure 7 Presence of legIslatIon to protect persons wIth Intellectual dIsabIlItIes
Figure S Presence of a judIcIal protectIon system (percenLaes o counLries by WHC reions) ..................................... 29
Figure 9 Presence of a judIcIal protectIon system (percenLaes o counLries by income caLeories) .................................. 29
Figure 10 Presence of specIal rules for offenders (percenLaes o counLries by WHC reions) ....................................... 30
Figure 11 Presence of specIal rules for offenders (percenLaes o counLries by income caLeories) ...................................... 30
Figure 12 Sources of fundIng for servIces (percenLaes o counLries) .............................................................................. 31
Figure 13 Presence and nature of government benehts (percenLaes o counLries) ......................................................... 34
Figure 14 HIgh access (>75%) to government benehts (percenLaes o counLries by WHC reions) .............................. 37
Figure 15 HIgh access (>75%) to government benehts (percenLaes o counLries by income caLeories) ....................... 37
Figure 16 Level of government that was responsIble for servIces (percenLaes o counLries by WHC reions) ............... 3S
Figure 17 Level of government that was responsIble for servIces (percenLaes o counLries by income caLeories) ........ 3S
Figure 1S OrganIzatIon of servIces (percenLaes o counLries by WHC reions) ............................................................. 39
Figure 19 OrganIzatIon of servIces (percenLaes o counLries by income caLeories) ...................................................... 39
Figure 20 factors that had an Impact on access to servIces (percenLaes o counLries) .................................................. 49
Figure 21 StrategIes to prevent Intellectual dIsabIlItIes (percenLaes o counLries by WHC reions) .............................. 52
Figure 22 StrategIes to prevent Intellectual dIsabIlItIes (percenLaes o counLries by income caLeories) ........................ 52
Figure 23 ProfessIonals Involved In provIsIon of servIces to persons wIth Intellectual dIsabIlItIes
(percenLaes o counLries) ................................................................................................................................. 53
Figure 24 Presence of standards for professIonals (percenLaes o counLries by WHC reions) ....................................... 54
Figure 25 Presence of standards for professIonals (percenLaes o counLries by income caLeories) ................................. 54
Figure 26 1raInIng for professIonals Involved In provIdIng servIces for persons wIth ID (percenLaes o counLries) ....... 56
Figure 27 Presence of NGOs and InternatIonal organIzatIons actIve In the held of ID
Figure 2S Presence of NGOs and InternatIonal organIzatIons actIve In the held of ID
Figure 29 DomaIns of NGOs' and InternatIonal organIzatIons' actIvItIes (percenLaes o counLries) .............................. 62
Figure 30 Research and data on ID (percenLaes o counLries by WHC reions) ............................................................. 65
Figure 31 Research and data on ID (percenLaes o counLries by income caLeories) ...................................................... 65
8
List of maps
Nap 1 PartIcIpatIng Member States of WHO and AssocIate Members of WHO ..................................................... 15
Nap 2 WHO regIons ...................................................................................................................................... 15
Nap 3 CountrIes that used the term mental retardatIon ...................................................................................... 1S
Nap 4 CountrIes that used the term Intellectual dIsabIlItIes ................................................................................ 19
Nap 5 CountrIes that used ICD as a dIagnostIc or classIhcatIon Instrument ......................................................... 21
Nap 6 CountrIes that used DSM-IV as a dIagnostIc or classIhcatIon Instrument ................................................... 21
Nap 7 CountrIes that had a natIonal polIcy or programme .................................................................................. 23
Nap S Presence of legIslatIon to protect persons wIth Intellectual dIsabIlItIes ....................................................... 2S
Nap 9 1ax-based fundIng for servIces .............................................................................................................. 33
Nap 10 NGOs as a source of fundIng for servIces ............................................................................................... 34
Nap 11 Presence of dIsabIlIty pensIon ............................................................................................................... 36
Nap 12 Impact of socIoeconomIc status on access to servIces ............................................................................... 50
Nap 13 Impact of geographIcal locatIon on access to servIces .............................................................................. 51
Nap 14 Impact of urban or rural locatIon on access to servIces ............................................................................. 51
Nap 15 Presence of research on ID .................................................................................................................... 66
List of acronyms
AAIDD 1he AmerIcan AssocIatIon on Intellectual and Developmental DIsabIlItIes, formerly AAMR
DM-ID DIagnostIc Manual - Intellectual DIsabIlIty
DSM 1he DIagnostIc and StatIstIcal Manual of Mental DIsorders
IASSID InternatIonal AssocIatIon for the ScIentIhc Study of Intellectual DIsabIlItIes
ICD InternatIonal ClassIhcatIon of DIseases
ICSCR InternatIonal Covenant on conomIc, SocIal and Cultural RIghts
ICf InternatIonal ClassIhcatIon of functIonIng, DIsabIlIty and Health
IDRM InternatIonal DIsabIlIty RIghts MonItor
II InclusIon InternatIonal
IQ IntellIgence QuotIent
MDRI Mental DIsabIlIty RIghts InternatIonal
MSD Department of Mental Health and Substance Abuse
NADD 1he NatIonal AssocIatIon for the Dually DIagnosed
NGO Nongovernmental organIzatIon
OCD OrganIzatIon for conomIc Co-operatIon and Development
PAHO Pan AmerIcan Health OrganIzatIon
UNSCO UnIted NatIons ducatIonal, ScIentIhc and Cultural OrganIzatIon
WHO World Health OrganIzatIon
WPA World PsychIatrIc AssocIatIon
9
Persons wiLh inLellecLual disabiliLies (lD) are requenLly Lhe mosL vulnerable roup and, on many occasions, are exposed Lo
human rihLs violaLions and deprived o minimum services and diniLy. 1hese persons are also Lhe mosL likely Lo be secluded
in lare insLiLuLions, unable Lo access basic healLh and educaLional services, and excluded rom ordinary social relaLions.
AlLhouh iL is well known LhaL inLellecLual disabiliLy is a nelecLed area, essenLial inormaLion abouL Lhe presence or absence
o resources and services or Lhis populaLion does noL even exisL in mosL o Lhe counLries o Lhe world.
1he World HealLh CranizaLion (WHC) and Lhe NonLreal PAHC/WHC CollaboraLin CenLre or Research and 1rainin in
NenLal HealLh have worked LoeLher Lo develop Lhe rsL 'ALlas: Clobal Resources or Persons wiLh lnLellecLual DisabiliLies'
(ALlas-lD). 1he main aim o ALlas-lD is Lo improve evidence-based knowlede and awareness on Lhe lobal and reional dis-
pariLies Lhrouh essenLial and needed inormaLion on resources and services or persons wiLh lD aL counLry level. 1his lobal
reporL includes inormaLion rom 147 counLries, represenLin 95% o Lhe world populaLion. 1he inormaLion is specically
relaLed Lo Lerms and classicaLion sysLems used or Lhis populaLion, policy and leislaLion, nancin and beneLs, preven-
Lion, healLh and social care services, human resources and Lrainin, research and inormaLion sysLems and roles o NCCs and
inLernaLional oranizaLions. ln addiLion, Lhe ALlas-lD includes a compleLe lossary o Lerms wiLh deniLions o basic concepLs
relaLed Lo Lhe inLellecLual disabiliLies eld and Lhe quesLionnaire used Lo collecL Lhe quanLiLaLive and qualiLaLive inormaLion.
ALlas-lD ndins reveal a lack o adequaLe policy and leislaLive response and a serious deciency o services and resources
allocaLed Lo Lhe care o persons wiLh lD lobally. 1he siLuaLion is especially worrisome in mosL low and middle income coun-
Lries. 1he lack o consensus on basic Lerms and classicaLion criLeria relaLed Lo Lhe lD eld do noL help Lo improve Lhe siLuaLion.
1he evidence provided by Lhis reporL is likely Lo be useul Lo proessionals, NCCs, developmenL aencies, public healLh and
social services secLor oranizaLions, service planners, policy makers, healLh and social researchers, amily members o people
wiLh lD, and especially Lo people wiLh inLellecLual disabiliLies. 1his reporL consLiLuLes a call or mobilizaLion o resources and
Lhe respecL o Lhe basic individual rihLs o persons wiLh lD aL Lhe inLernaLional level.
We sincerely hope LhaL ALlas-lD will be able Lo assisL decision makers in ormulaLion o an adequaLe response Lo Lhe needs o
persons wiLh inLellecLual disabiliLies and Lheir amilies.
Foreword
f OR WOR D
CasLon P Harnois
DirecLor, NonLreal PAHC/WHC
CollaboraLin CenLre or Research
and Reerence in NenLal HealLh
8enedeLLo Saraceno
DirecLor, DeparLmenL o NenLal HealLh
and SubsLance Abuse
World HealLh CranizaLion
10
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11
We, Lhe ediLors, are pleased Lo presenL ALlas: Clobal Resources or Persons wiLh lnLellecLual DisabiliLies (ALlas-lD).
1he reasons behind ALlas-lD are Lhreeold. FirsL, Lhe imporLance o inLellecLual disabiliLies or WHC, Lhe realizaLion LhaL lo-
bal daLa collecLion in Lhe eld o inLellecLual disabiliLies has lon been nelecLed, and Lhe consequenL need or such a com-
prehensive baseline Lo acL as a caLalysL or advocacy and plannin eorLs. Second, Lhe increasin emerence o disabiliLy as a
human rihLs issue, as sLaLed by Lhe UniLed NaLions ConvenLion on Lhe RihLs o Persons wiLh DisabiliLies, and as Lhe esLab-
lished concepLual link beLween healLh and human rihLs (CHCHR, 2000; WHC, 2002; Cruskin eL al, 2005) and iLs poLenLial
implicaLion or LreaLy-based obliaLions on counLries reardin inLellecLual disabiliLy resources. And nally, Lhe recenL esLab-
lishmenL o a link beLween WHC and Lhe inLellecLual disabiliLy eld, via Lhe NonLreal PAHC/WHC CollaboraLin CenLre or
Reerence and Research in NenLal HealLh and iLs associaLed parLners, Lhe LiseLLe-Dupras and Lhe WesL NonLreal ReadapLa-
Lion cenLres or persons wiLh inLellecLual disabiliLies (PAHC/WHC, 2004; LecomLe & Nercier, 2007); Lhis enabled Lhe coordi-
naLion o an ALlas on inLellecLual disabiliLy resources rom an inLellecLual disabiliLies aency-based research Leam. WHC has
previously worked in Lhe eld o lD ocused in Lhe area o healLh and aein o persons wiLh inLellecLual disabiliLies (1horpe
eL al, 2000; Janicki, 2000; WHC/lASSlD/ll, 2001).
1his projecL has aimed Lo map resources and services or inLellecLual disabiliLies in all Nember SLaLes o WHC, AssociaLe
Nembers o WHC, and areas and LerriLories by compilin and calculaLin Lheir disLribuLion by reions and income levels. 1he
evenLual objecLive is Lo use Lhis inormaLion Lo enhance lobal and naLional awareness and supporL or persons wiLh inLellec-
Lual disabiliLies and Lheir amilies. 1he primary LareL readers or ALlas-lD are planners or healLh and social policy and servic-
es wiLhin counLries. However, Lhe ALlas will also be useul or providers o services or inLellecLual disabiliLies, or inLernaLional
and naLional NCCs LhaL are acLive in Lhe area o inLellecLual disabiliLies, human rihLs advocaLes and acLivisLs, public healLh
proessionals and sLudenLs, and or civil socieLy in eneral. 1he value o ALlas-lD can only be juded by iLs readers and users,
buL we eel LhaL Lhe projecL has conLribuLed Lo Lhe eld o inLellecLual disabiliLies in Lhree ways. FirsL, iL has idenLied aps
and needs in inLellecLual disabiliLies resources and services LhrouhouL Lhe world. Second, iL has developed Lwo insLrumenLs
Lo be used aL counLry or reional level: a lossary o Lerms used in inLellecLual disabiliLies and Lhe ALlas-lD quesLionnaire Lo
map inLellecLual disabiliLies services (see Appendix lll and lV). 1hird, iL has produced a neLwork o counLry respondenLs in Lhe
inLellecLual disabiliLies eld (see Appendix ll).
We are aware o several limiLaLions in Lhe daLa presenLed in ALlas-lD; we welcome all suesLions Lo improve Lhe quan-
LiLy and qualiLy o daLa, especially rom counLries where inormaLion on inLellecLual disabiliLies is scarce. We hope LhaL Lhis
projecL, by esLablishin Lhe easibiliLy o a worldwide research sLudy in inLellecLual disabiliLies, can be Lhe rsL sLep Lowards
lobal empowermenL o persons wiLh inLellecLual disabiliLies and Lheir amilies Lhrouh awareness o Lhe need Lo implemenL
policies and prorammes Lo ll Lhe ap o services and resources across Lhe lobe.
Preface
P R f AC
Shekhar Saxena
Narco Carrido Cumbrera
Cline Nercier
Jocelin LecomLe
12
1his projecL has been conceived and implemenLed joinLly by Lhe World HealLh CranizaLion (WHC) and Lhe NonLreal
PAHC/WHC CollaboraLin CenLre or Research and 1rainin in NenLal HealLh aL Lhe Doulas UniversiLy lnsLiLuLe in NenLal
HealLh. 1he projecL Leam consisLed o Shekhar Saxena and Narco Carrido-Cumbrera rom WHC, and Cline Nercier and
Jocelin LecomLe (projecL ALlas-lD coordinaLor) rom NonLreal, who are also Lhe ediLors o Lhis reporL. 1arun Dua has pro-
vided Lechnical supporL Lo Lhe projecL. 8enedeLLo Saraceno and CasLon Harnois provided vision and uidance Lo Lhis projecL.
Financial supporL or Lhis projecL was provided by Lhe LiseLLe-Dupras and WesL NonLreal readapLaLion cenLres, Lhe NinisLry
o HealLh and Social Aairs o Qubec, Lhe Cce des personnes handicapes du Qubec, Lhe FdraLion qubcoise des
cenLres de radapLaLion en dcience inLellecLuelle eL Lroubles envahissanLs du dveloppemenL, and Lhe CovernmenL o
Canada (Cce o DisabiliLy SLudies and Canadian HealLh Aency). 1he opinions and inLerpreLaLions conLained in Lhe reporL
do noL necessarily reecL Lhose o Lhe CovernmenLs o Canada or o Qubec.
lnLernal review was conducLed by colleaues rom Lhe WHC DeparLmenL o NenLal HealLh and SubsLance Abuse as well as
Reional Advisers or NenLal HealLh and SubsLance Abuse: 1hrese Aossou, Reional Cce or Arica; Jos Niuel Caldas-
Almeida, lLzak Levav and Jore Rodriuez, Reional Cce or Lhe Americas; Vijay Chandra, Reional Cce or SouLh-LasL
Asia; NaLLhijs Nuijen, Reional Cce or Lurope; Nohammad 1ahi Yasamy, Reional Cce or Lhe LasLern NediLerra-
nean, and Xiandon Wan, Reional Cce or Lhe WesLern Pacic.
LxLernal review o Lhe ALlas-lD quesLionnaire, lossary o Lerms, and o Lhe nal reporL was conducLed by Sayyed Ali Samadi,
Andrea Aznar, Ciulia 8alboni, Julie 8eadle-8rown, David 8raddock, Valerie J 8radley, Yannick Courbois, Xenia Nas De Verara,
Lric Lmerson, SaLish Cirimaji, Dieo Conzalez, Narie-Claire Haelewyck, Abdul Hameed Al Habeeb, Nichele lsaac, Henry
Kwok, RuLh Luckasson, JayanLhi Narayan, 1revor ParmenLer, 8rian RoberLson, Luis Salvador-Carulla, Johannes Schadler, Rob-
erL L Schalock, Uma 1uli, and Nichael Wehmeyer.
AppreciaLion musL be exLended Lo all Lhe counLry respondenLs who worked dilienLly Lo collecL and reporL Lhe daLa con-
Lained in Lhis reporL (respondenLs are lisLed in Appendix ll), as well as Lheir respecLive minisLries, nonovernmenLal oraniza-
Lions (NCCs), universiLies, or research cenLres.
Special Lhanks musL also be iven Lo Cenevieve 8oyer, France Desjardins, Donald FoidarL, Dominique ForLin, Valrie Houde,
Daphn LamonLane and Fanny LemeLayer or Lheir assisLance Lo Lhis projecL. Rosemary WesLermeyer provided assisLance wiLh
Lhe producLion o Lhis reporL.
1 H P R OJ C1 1 AM AND PAR1 N R S
The project team and partners
13
AL presenL, inormaLion on resources and services or persons wiLh inLellecLual disabiliLies is scarce, ramenLed, and relaLes
mainly Lo hih-income counLries. 1o nd daLa abouL availabiliLy o services, Lheir naLure, and access Lo Lhem or a iven
counLry is hard, and such daLa does noL exisL aL a lobal level. Lare dierences are seen beLween hih-income counLries and
counLries wiLh low or middle incomes wiLh reard Lo Lhe availabiliLy and Lhe Lype o inormaLion abouL naLional services and
resources. Considerable inormaLion exisLs or some hih-income counLries; deLailed reporLs have been published, based on
exLensive inormaLion sysLems. 8y conLrasL, documenLaLion is much more scarce and inaccuraLe in counLries o low or mid-
dle income. NosL o Lhe Lime, such documenLaLion is based on specic experiences o a iven roup o individuals, a Lype o
dianosis, or a LerriLory. However, aL all income levels, Lo nd an overall ure LhaL will describe Lhe siLuaLion aL Lhe naLional
level is diculL. QuanLiLaLive daLa or Lhe conLribuLion o amilies and NCCs is pracLically non-exisLenL, even i Lheir role is rec-
onized. Cne o Lhe objecLives o Lhe new Clobal ALlas o Resources or Persons wiLh lnLellecLual DisabiliLies is Lo sLarL llin
Lhis ap o inormaLion Lhrouh key inormanLs rom dierenL elds who are workin Lo improve Lhe qualiLy o lie o persons
wiLh inLellecLual disabiliLies in all Nember SLaLes o WHC, AssociaLe Nembers o WHC, and areas and LerriLories.
I N1 R ODUC1 I ON
lntroduction
14
M 1 HODS
Procedure
PreparatIon and valIdatIon of questIonnaIre
and glossary
A quesLionnaire LhaL was iniLially developed Lo collecL inor-
maLion on services and resources or persons wiLh inLel-
lecLual disabiliLies under Lhe iniLiaLive o Lhe lnLernaLional
AssociaLion or ScienLic SLudies in lnLellecLual DisabiliLies
(lASSlD) was used as Lhe sLarLin poinL or Lhe projecL.
Areas Lo be covered, and Lhe inormaLion Lo be aLhered or
each area, were esLablished by consulLaLion wiLh experLs in
inLellecLual disabiliLies rom around Lhe world (see ProjecL
Leam and parLners secLion) and review o Lhe exisLin
ALlas. Successive versions were submiLLed Lo Lhe experLs or
assessmenL unLil a consensus was aLLained. SimulLaneously,
Lhe same process was used Lo develop an accompanyin
lossary. 1he quesLionnaire and Lhe lossary were devel-
oped in Lnlish and LranslaLed inLo Lhe oLher Lhree ocial
lanuaes o WHC. 1he Lnlish versions o Lhe quesLion-
naire and lossary are provided in Appendices lV and V. 1he
deniLions used in Lhe lossary are workin deniLions or
Lhe purpose o Lhe ALlas-lD projecL, and do noL consLiLuLe
ocial WHC deniLions.
1he quesLionnaire was oranized inLo Lhe ollowin sec-
Lions: (1) deniLions and dianosLic classicaLion; (2) epide-
mioloy o inLellecLual disabiliLies; (3) policy, prorammes,
and leislaLion; (4) nancin and beneLs; (5) services Lo
children, adolescenLs, and adulLs; (6) services Lo amilies;
(7) human resources; (8) role o NCCs; (9) role o inLerna-
Lional oranizaLions; and (10) daLa collecLion and research.
While Lryin Lo use Lerms LhaL are as unambiuous and
unconLroversial as possible, we came across many Lerms
used or inLellecLual disabiliLies wiLh varyin levels o
accepLabiliLy across disciplines, proessions, and culLures.
WHC's lnLernaLional ClassicaLion o Diseases (lCD) uses
Lhe Lerm menLal reLardaLion, alLhouh iL is reconized LhaL
many sLakeholders, includin roups represenLin persons
wiLh inLellecLual disabiliLies and Lheir amilies, have serious
reservaLions abouL Lhis Lerm. As such, in Lhis documenL,
Lhe Lerm "inLellecLual disabiliLies" (lD) has been used Lo
improve readabiliLy since iL seems Lo be mosL accepLable Lo
Lhe dierenL sLakeholders LhaL collaboraLed Lo prepare Lhis
reporL.
Data collectIon process
1he daLa were collecLed Lhrouh naLional respondenLs. A
seL o criLeria was used Lo esLablish a roup o respondenLs
LhaL was as homoeneous as possible. 1hus, respondenLs
had Lo be specialisLs in Lhe eld o inLellecLual disabiliLies
and had Lo represenL, in order o preerence: (1) Lhe ov-
ernmenL or minisLry responsible or inLellecLual disabiliLies;
(2) a public oranizaLion LhaL acLs as an advisory body Lo
Lhe overnmenL in maLLers o inLellecLual disabiliLies; (3) a
naLional NCC LhaL deals wiLh inLellecLual disabiliLies; or (4) a
repuLable universiLy or research insLiLuLion LhaL specializes in
Lhe eld o inLellecLual disabiliLies.
WiLh Lhe aid o Lhe lossary, Lhe quesLionnaire was com-
pleLed by naLional respondenLs, who could call on any oLher
available sources o inormaLion and oLher conLribuLors who
mihL be beLLer inormed in a iven area. 1he respondenLs
were inviLed Lo communicaLe wiLh Lhe projecL coordinaLor in
NonLreal abouL any quesLion LhaL needed claricaLion. 1he
respondenLs could compleLe Lhe quesLionnaire eiLher in Ln-
lish or one o Lhree oLher lanuaes, buL Lhe Lnlish version
remained Lhe reerence version. 1he quesLionnaire could
be compleLed elecLronically and respondenLs were asked Lo
orward any perLinenL addiLional documenLaLion.
Nore Lhan Lwo Lhirds (67.8%) o Lhe quesLionnaires were
compleLed or approved by a member o Lhe overnmenL
or a minisLry responsible or inLellecLual disabiliLies. AbouL
a quarLer (23.8%) came rom NCCs, and 18.4% rom uni-
versiLies and research insLiLuLes. ln low-income counLries,
58.1% o respondenLs were rom overnmenLs, whereas
in lower-income counLries, LhaL proporLion was 78.1%.
ln hih-income counLries, Lhe second main sources o
respondenLs aLer overnmenLs (45.7%) were universiLies
and research insLiLuLions (34.3%). ln low-income counLries,
naLional NCCs were Lhe second mosL imporLanL sources o
inormaLion (30.2%), aLer overnmenLs (58.1%). ln SouLh-
LasL Asia and Lurope, members o universiLies or research
cenLres accounLed or subsLanLial proporLions o inormanLs
(60.0% and 34.0%, respecLively). ln Arica, more Lhan a
Lhird (37.1%) o respondenLs came rom naLional NCCs,
while in Lhe Americas 72.0% came rom overnmenL sourc-
es. 1he compleLe lisL o parLicipaLin naLional respondenLs is
in Appendix ll.
ln some counLries, Leams o respondenLs rom more Lhan
one, i noL all Lhree, caLeories o respondenLs cooperaLed
Lhrouh Lheir own iniLiaLive Lo compleLe Lhe quesLionnaire.
ln 17 insLances, more Lhan one quesLionnaire or Lhe same
counLry was received. ln Lhese cases, we ave prioriLy
accordin Lo our preerence or respondenLs (i.e. hihesL
prioriLy Lo overnmenL represenLaLives). When Lhis ques-
Lionnaire conLained missin daLa (and Lhe respondenL could
noL be reached), Lhen Lhe oLher quesLionnaires were used Lo
compleLe Lhe missin inormaLion. Nissin daLa were Laken
rom Lhe quesLionnaire supplied by Lhe respondenL o Lhe
nexL hihesL preerence.
Cn receipL, quesLionnaires were veried and codied.
Responses in "oLher" caLeories were redisLribuLed in Lhe
Nethods
15
M 1 HODS
available caLeories, when jusLied. Some o Lhe respondenLs
were Lhen conLacLed or urLher inormaLion or claricaLion.
Cur resulLs are based on 147 compleLed quesLionnaires
(rom 143 Nember SLaLes o WHC, one AssociaLe Nem-
ber o WHC, and Lhree areas or LerriLories), correspondin
Nap 1 PartIcIpatIng Member States of WHO and AssocIate Members of WHO
compared wiLh hiher raLes in Lurope (90.4%). No such
variaLion could be seen when counLries were sLraLied by
level o income; all our income caLeories were close Lo Lhe
LoLal median raLe (74.6%) o response (rane beLween 70.5
and 79.5%).
Data analysIs
DaLa were enLered inLo a NicrosoL Lxcel daLabase and ana-
lysed usin SPSS soLware. DescripLive sLaLisLical analyses
were done on Lhe daLa Lo calculaLe requencies and per-
cenLaes, and measures o cenLral Lendencies.
Cross-LabulaLions were calculaLed accordin Lo Lhe six WHC
reions (Arica, Americas, SouLh-LasL Asia, Lurope, LasLern
NediLerranean, and WesLern Pacic) and Lhe our counLry
income caLeories esLablished by Lhe World 8ank based on
ross naLional income (CNl) per capiLa in 2003 (see Appen-
dix l). 1hese roups are: low income ($765 per year or less),
lower middle income ($766-3035), upper middle income
($3036-9385), and hih income ($9386 or more).
AfrIca
AmerIcas
astern
MedIterranean
urope
Western
PacIfIc
South-ast AsIa
Nap 2 WHO regIons
Loa response raLe o 74.6% o counLries, and represenLin
94.6% o Lhe world's populaLion (2007).
Some variaLions in Lhe raLe o response were seen accord-
in Lo WHC reions, wiLh lower raLes in SouLh-LasL Asia
(41.7%) and in Lhe LasLern NediLerranean (54.2%),
Yes
No InformatIon
16
M 1 HODS
Limitations
Clobal surveys such as Lhis are subjecL Lo cerLain limiLaLions.
Cne limiLaLion perLains Lo Lhe wordin o Lhe quesLionnaire
iLsel. ln Lhe absence o an inLernaLional Lerminoloy and, in
view o Lhe diversiLy o Lhe conLexLs, one cannoL presume
LhaL Lhe same Lerm will mean Lhe same Lo every respond-
enL, or LhaL Lhe Lerms used correspond Lo Lhe realiLy o a
specic counLry. 1he acL LhaL one cannoL assume a com-
mon undersLandin o Lhe Lerms o reerence o each ques-
Lion, which ensures Lhe consisLency o reporLin, aecLs Lhe
reliabiliLy o Lhe resulLs. We sLandardized Lhe Lerms o reer-
ence as much as possible, Lo reduce Lhe risk o ambiuiLy,
erroneous comprehension, and diverence, by preparaLion
o a lossary and appoinLmenL o an inLernaLional coordina-
Lor in NonLreal who was available Lo provide claricaLion
or respondenLs. 1he vericaLion o each quesLionnaire, and
a conLacL wiLh Lhe respondenLs, allowed or correcLion o
Lhe mosL obvious inconsisLencies.
A urLher diculLy in collecLin and areaLin daLa was
LhaL Lhe provision o services can be under Lhe jurisdicLion o
more Lhan one minisLry and be shared beLween many aen-
cies o dierenL sLaLus - i.e. public, privaLe, and non-proL -
and by dierenL levels o overnmenL (e.. in ederal sLaLes).
AnoLher limiLaLion is inherenL Lo Lhe process o analysis
accordin Lo counLry-income caLeories or WHC reions;
or example, areaLion o counLries such as Canada, Lhe
USA, Nexico, CuaLemala, and 8razil creaLes a bias Lowards
Lhe imporLanL economic, eoraphical, culLural, and reion-
al dierences beLween Lhese counLries.
DaLa could also be incompleLe or parLial. For example, acLiv-
iLies in Lhe public secLor and Lhe services oered by proes-
sional providers are usually beLLer documenLed Lhan Lhose
available in Lhe privaLe secLor and rom NCCs. 1radiLional
resources and rassrooLs iniLiaLives are under-documenLed,
and consequenLly less reporLed in our sLudy. 1he same can
be said abouL supporL oered by communiLies, amilies, or
LradiLional healers.
Nany poLenLial sources o bias can be idenLied. 1he mosL
obvious is Lhe absence o acLual daLa abouL resources or
inLellecLual disabiliLies. ln such circumsLances, Lhe respond-
enLs had Lo rely on approximaLions, i noL on Lheir own
experiences. Noreover, Lhe absence o acLual inormaLion
is likely Lo occur in counLries or reions LhaL share common
characLerisLics LhaL could aecL Lhe ndins sLill more.
1he discreLe ormaL (i.e. answers eiLher "yes" or "no") o
mosL o Lhe quesLions did noL aLher inormaLion on cover-
ae and qualiLy. Such a ormaL biases Lhe daLa Lowards an
overesLimaLion o available services or acLiviLies. 1hus, Lhe
presence o a iven service in Lhe capiLal ciLy o a respond-
in counLry, or o a piloL projecL, would allow or a "yes",
even i Lhis service was accessible only Lo very ew persons.
1o alleviaLe Lhis bias as much as possible, Lhe wordin o
Lhe quesLions encouraed reerence Lo overall Lrends by use
o Lerms such as "enerally" or "mosL o Lhe Lime". Cne
quesLion was specically desined Lo address LerriLorial,
culLural, or socioeconomic acLors LhaL mihL aecL access
Lo inLellecLual disabiliLies services. All in all, one should noLe
LhaL opLions were limiLed in many quesLions and Lhe choice
o Lhe answer mihL noL be a Lrue reecLion o Lhe real siLu-
aLion in a parLicular counLry.
Due Lo Lhe prioriLizaLion o Lypes o respondenLs, mosL
respondenLs were members o, or associaLed wiLh, Lhe ov-
ernmenL. 1he resulLs were Lhus exposed Lo a risk o bias
Lowards a overnmenL perspecLive, all Lhe more so since Lhe
quesLionnaires were approved, and in some circumsLances
modied, by overnmenLs. 1his limiLaLion is due Lo Lhe acL
LhaL oLen, in counLries o low or middle income, inormaLion
abouL inLellecLual disabiliLies services is concenLraLed wiLh
Lhe naLional overnmenL. Noreover, WHC, as Lhe direcLin
and coordinaLin auLhoriLy on inLernaLional healLh wiLhin Lhe
UniLed NaLions (UN), mainLains close relaLions wiLh Lhese
overnmenLs. NeverLheless, a liLLle less Lhan hal Lhe oLher
respondenLs were represenLaLives o NCCs or academics.
1hus, in spiLe o a somewhaL apparenL bias Lowards overn-
menL sources, Lhe lobal ures were aLhered rom a vasL
array o sLakeholder perspecLives (see Appendix ll).
Finally, currenL epidemioloical inormaLion on inLellecLual
disabiliLies is scarce, ramenLed, and relaLes mainly Lo
hih-income counLries. Prevalence and incidence raLes o
inLellecLual disabiliLies are based on esLimaLes LhaL can vary
considerably (Fujiura, 2005; WHC, 2001; Leonard & Wen,
2002; Durkin, 2002). QuesLion 2 o our quesLionnaire asked
respondenLs Lo esLimaLe Lhe number o persons wiLh inLel-
lecLual disabiliLies in Lheir counLry (per 100 000 inhabiLanLs).
However, some answers were based on raLes per 100 000,
while oLhers were based on absoluLe counLry ures; Lhis
shows Lhe diversiLy o comprehension o Lhe ALlas ques-
Lions, and Lhe lack o reliabiliLy o Lhe epidemioloical daLa
collecLed by Lhis projecL. Accordinly, any such daLa has noL
been reporLed.
17
f I NDI NGS Y 1 H M S
TerminoIogy and cIassication
Nany Lerms and deniLions are used Lo reer Lo inLellecLual
disabiliLies, such as menLal reLardaLion, menLal handicap,
inLellecLual disabiliLies, and learnin disabiliLies. NeverLhe-
less, all Lhese deniLions have Lhree criLeria in common:
sinicanL limiLaLions in inLellecLual uncLionin, sinicanL
limiLaLions in adapLive behaviour, and maniesLaLion o
Lhese sympLoms beore adulLhood.
1he Lerm menLal reLardaLion was Lhe Lerm mosL used in Lhe
responses rom Lhe 147 counLries covered (76.0%), ol-
lowed by inLellecLual disabiliLies (56.8%), menLal handicap
(39.7%) and menLal disabiliLy (39.0%).
"WhIle the condItIons whIch gIve rIse to mental retar-
datIon or Intellectual dIsabIlIty are unIversal, how the
resultIng condItIon Is conceptualIzed, assessed, and
categorIzed, and the response whIch Is made, wIll and
does vary between countrIes, cultures, and economIes."
(Felce, 2006)
NenLal reLardaLion was Lhe Lerm mosL oLen used in coun-
Lries rom all income caLeories, as well as all six WHC
reions, alLhouh iL was used less in hih-income counLries
(60.0%) Lhan in oLher income caLeories, and less oLen in
Lhe WesLern Pacic (63.6%) Lhan in oLher WHC reions.
Use o Lhe Lerm inLellecLual disabiliLies seemed Lo vary wiLh
level o income: use in hih-income counLries (80.0%)
was markedly dierenL rom LhaL in oLher counLries (rane
44.4-54.8%).
TabIe 1 1ermInology used to refer to Intellectual dIsabIlItIes (percenLaes o counLries by WHC reions)
World AfrIca AmerIcas South-
ast AsIa
urope astern
MedIter-
ranean
Western
PacIhc
N
ProportIon
of
countrIes
Number
of
countrIes
Developmental dIsabIlItIes 22.6% 33 14.7% 16.0% 20.0% 29.8% 23.1% 27.3% 146
Intellectual dIsabIlItIes 56.8% 83 47.1% 60.0% 80.0% 59.6% 46.2% 63.6% 146
LearnIng dIsabIlItIes 32.2% 47 35.3% 32.0% 60.0% 27.7% 23.1% 36.4% 146
Mental dehcIency 17.2% 25 26.5% 12.5% 60.0% 19.1% 0% 4.5% 145
Mental dIsabIlIty 39.0% 57 55.9% 44.0% 0% 34.0% 46.2% 22.7% 146
Mental handIcap 39.7% 58 61.8% 16.0% 80.0% 34.0% 46.2% 31.8% 146
Mental retardatIon 76.0% 111 82.4% 80.0% 80.0% 70.2% 92.3% 63.6% 146
Mental subnormalIty 11.6% 17 11.8% 12.0% 60.0% 6.4% 23.1% 4.5% 146
Findings by themes
76.0
39.7
56.8
39.0
ll.6
l7.2
22.6
32.2
0
20
40
60
80
l00
|ntellectual
dlsabllltles
Mental
dlsabllltly
Developmental
dlsabllltles
Mental
subnormallty
Mental
retardatlon
Mental
declency
Learnlng
dlsabllltles
Mental
Handlcap
Figure 1 1ermInology used to refer to Intellectual
dIsabIlItIes (percenLaes o counLries)
18
TabIe 2 1ermInology used to refer to Intellectual dIsabIlItIes (percenLaes o counLries by income caLeories)
World Low-Income Lower-
mIddle
Income
Upper-
mIddle
Income
HIgh Income N
ProportIon of
countrIes
Number
of
countrIes
Developmental dIsabIlItIes 22.6% 33 21.4% 14.3% 14.8% 40.0% 146
Intellectual dIsabIlItIes 56.8% 83 54.8% 47.6% 44.4% 80.0% 146
LearnIng dIsabIlItIes 32.2% 47 31.0% 26.2% 51.9% 25.7% 146
Mental dehcIency 17.2% 25 26.2% 19.0% 7.7% 11.4% 145
Mental dIsabIlIty 39.0% 57 42.9% 38.1% 48.1% 28.6% 146
Mental handIcap 39.7% 58 54.8% 31.0% 37.0% 34.3% 146
Mental retardatIon 76.0% 111 81.0% 83.3% 77.8% 60.0% 146
Mental subnormalIty 11.6% 17 21.4% 9.5% 11.1% 2.9% 146
Nap 3 CountrIes that used the term mental retardatIon
Yes
No
No InformatIon
Nap 4 CountrIes that used the term Intellectual dIsabIlItIes
19
1he lnLernaLional ClassicaLion o Diseases (lCD) was Lhe
dianosLic insLrumenL or classicaLion sysLem mosL oLen
used Lo reer Lo inLellecLual disabiliLies (62.3%), ollowed
by Lhe DianosLic and SLaLisLical Nanual o NenLal Disor-
ders (DSN)-lV (39.7%), and proessional opinion or clinical
judmenL (31.5%). Cne should noLe LhaL boLh Lhe lCD and
DSN-lV classicaLion sysLems use Lhe Lerm "menLal reLar-
daLion" Lo reer Lo inLellecLual disabiliLies. 1he lnLernaLional
ClassicaLion o FuncLionin, DisabiliLy, and HealLh (lCF)
was only menLioned by 14.4% o respondenLs.
lCD was clearly Lhe mosL popular sysLem in Lurope (89.4%),
and in hih-income counLries (77.1%). ln SouLh-LasL Asia,
resulLs showed LhaL Lhe AANR (now American AssociaLion
on lnLellecLual and DevelopmenLal DisabiliLies; AAlDD) cri-
Leria were as popular as lCD (boLh 60%), whereas DSN-lV
and lCD were used aL much Lhe same level in Lhe WesLern
Pacic (45.5% and 54.5%, respecLively).
62.3
39.7
3l.5
l4.4 l5.l
0
20
40
60
80
l00
DSM- |v AAMP /
AA|DD
|CP Professlonal
oplnlon
|CD-l0
Figure 2 DIagnostIc or classIhcatIon system used In
relatIon to Intellectual dIsabIlItIes (percenLaes
o counLries)
Yes
No
No InformatIon
20
TabIe 4 DIagnostIc or classIhcatIon system used In relatIon to Intellectual dIsabIlItIes
(percenLaes o counLries by income caLeories)
mIddle
Income
Upper-
mIddle
Income
HIgh Income N
ProportIon of
countrIes
Number
of
countrIes
AAMR or AAIDD 15.1% 22 19.0% 21.4% 0% 14.3% 146
DSM-IV 39.7% 58 28.6% 38.1% 48.1% 48.6% 146
ProfessIonal opInIon 31.5% 46 38.1% 35.7% 25.9% 22.9% 146
ICD-10 62.3% 91 52.4% 57.1% 66.7% 77.1% 146
ICf 14.4% 21 14.3% 9.5% 18.5% 17.1% 146
TabIe 3 DIagnostIc or classIhcatIon system used In relatIon to Intellectual dIsabIlItIes
(percenLaes o counLries by WHC reions)
ast AsIa
urope astern
MedIter-
ranean
Western
PacIhc
N
ProportIon
of
countrIes
Number
of
countrIes
AAMR or AAIDD 15.1% 2 20.6% 16.0% 60.0% 6.4% 23.1% 9.1% 146
DSM-IV 39.7% 58 38.2% 52.0% 40.0% 27.7% 53.8% 45.5% 146
ProfessIonal opInIon 31.5% 46 50.0% 32.0% 20.0% 23.4% 46.2% 13.6% 146
ICD-10 62.3% 91 41.2% 48.0% 60.0% 89.4% 61.5% 54.5% 146
ICf 14.4% 21 17.6% 12.0% 20.0% 14.9% 15.4% 9.1% 146
Use o lCD criLeria varied accordin Lo counLry income caL-
eories; a reaLer proporLion o counLries in hih-income
counLries used Lhese criLeria Lhan did low-income counLries
(rane 52.4% in low-income counLries Lo 77.1% in hih-
income counLries). Hih-income counLries were less likely Lo
rely on proessional opinion (22.9%) Lhan were low-income
counLries (38.1%). Nore hih-income and upper middle-
income counLries used DSN-lV criLeria Lhan did counLries
rom oLher income caLeories (48.6% and 48.1%, respec-
Lively). Cne should noLe LhaL clinical judmenL is noL, per
se, a dianosLic or classicaLion sysLem. 1he meanin o
Lhese daLa could be LhaL proessional opinion was used or
clinical or adminisLraLive purposes, raLher Lhan a sLandard-
ized insLrumenL.
21
Nap 5 CountrIes that used ICD as a dIagnostIc or classIhcatIon Instrument
Nap 6 CountrIes that used DSM-IV as a dIagnostIc or classIhcatIon Instrument
Yes
No
No InformatIon
Yes
No
No InformatIon
22
PoIicies and programmes
1here was a naLional policy or proramme specically
relaLed Lo inLellecLual disabiliLies in 59.2% o Lhe counLries
LhaL responded Lo Lhe survey. 1here were ew dierences
in Lhese resulLs beLween WHC reions, wiLh proporLions
varyin rom 76.9% (LasLern NediLerranean) Lo 53.2%
Nany overnmenLal aencies were involved in Lhe eld o
inLellecLual disabiliLies. 1he ure presenLs an overview o
Lhe naLional deparLmenLs involved in Lhe eld o inLellecLual
disabiliLies. 1he daLa indicaLe LhaL dierenL aencies have
shared responsibiliLies or Lhe eld and LhaL iLs manae-
59.2
54.3
72.0
60.0
53.2
76.9
54.5
22.4
3l.4
l2.0
40.0
3l.9
7.7
4.5
l8.4
l4.3
l6.0
0.0
l4.9 l5.4
40.9
0
20
40
60
80
l00
world western Paclc Lastern Medlteranean Lurope South-Last Asla Amerlcas Afrlca
59.2
55.6
7l.4
5l.2
57.l
22.4
28.6
l8.5
ll.9
30.2
l8.4
l4.3
25.9
l6.7
l8.6
0
20
40
60
80
l00
world Hlgh Upper mlddle Lower mlddle Low
Presence of natIonal polIcy on Intellectual dIsabIlIty
Intellectual dIsabIlItIes In other polIcIes
Absence of natIonal polIcy on Intellectual dIsabIlIty
(Lurope). C Lhe counLries LhaL did noL have a specic
naLional policy or proramme, 22.4% (33 counLries)
reerred Lo inLellecLual disabiliLies in oLher policies. Respond-
enLs said LhaL inLellecLual disabiliLies were noL covered by
any policy or proramme in 27 counLries (18.4%).
menL is scaLLered amon many aencies. AL Lhe policy level,
educaLion (77.8%), healLh (71.1%), disabiliLy (67.8%), and
social welare (67.8%) were Lhe secLors mosL involved in
issues relaLed Lo persons wiLh inLellecLual disabiliLies.
23
77.8
7l.l
67.8
56.7
52.2
67.8
47.8
32.2
27.8 27.8
30.0
76.2
67.3
36.7
66.7
l7.7
34.7
l9.7
34.7
l8.4
l5.0
l2.2
32.7
56.5
38.l
62.6
l6.3
34.7
34.7
24.5
8.2
l4.3 l5.0
0
20
40
60
80
l00
Lducatlon Mental health Human rlghts/1ustlce Soclal welfare Dlsablllty Health
0
20
40
60
80
l00
Aabour Ancome Houslng Aouth Arotectlon Aamlly
Figure 5 Departments responsIble for polIcIes and fundIng or monItorIng programmes (percenLaes o counLries)
Departments responsIble for a polIcy programme
Departments whIch fund and/or monItor programmes for chIldren and adolescents
Departments whIch fund and/or monItor programmes for adults
77.8
7l.l
67.8
56.7
52.2
67.8
47.8
32.2
27.8 27.8
30.0
76.2
67.3
36.7
66.7
l7.7
34.7
l9.7
34.7
l8.4
l5.0
l2.2
32.7
56.5
38.l
62.6
l6.3
34.7
34.7
24.5
8.2
l4.3 l5.0
0
20
40
60
80
l00
Lducatlon Mental health Human rlghts/1ustlce Soclal welfare Dlsablllty Health
0
20
40
60
Nap 7 CountrIes that had a natIonal polIcy or programme
Yes
No
No InformatIon
24
TabIe 6 Presence of a specIhc polIcy or programme In whIch Intellectual dIsabIlItIes are addressed
mIddle
Income
Upper-
mIddle
Income
HIgh Income N
ProportIon of
countrIes
Number
of
countrIes
DIsabIlIty Act 67.8% 61 58.3% 56.7% 73.3% 90.5% 90
ducatIon 77.8% 70 66.7% 73.3% 86.7% 90.5% 90
Health 71.1% 64 58.3% 73.3% 80.0% 76.2% 90
HousIng 27.8% 25 12.5% 23.3% 26.7% 52.4% 90
Human rIghts 56.7% 51 41.7% 56.7% 53.3% 76.2% 90
famIly 32.2% 29 29.2% 33.3% 40.0% 28.6% 90
Income 27.8% 25 25.0% 10.0% 20.0% 61.9% 90
Labour 47.8% 43 16.7% 56.7% 53.3% 66.7% 90
Mental health 52.2% 47 62.5% 56.7% 53.3% 33.3% 90
SocIal welfare 67.8% 61 54.2% 66.7% 86.7% 71.4% 90
Youth protectIon 30.0% 27 29.2% 30.0% 26.7% 33.3% 90
TabIe 5 Presence of a specIhc polIcy or programme In whIch Intellectual dIsabIlItIes are addressed
ast AsIa
urope astern
MedIter-
ranean
Western
PacIhc
N
ProportIon
of
countrIes
Number
of
countrIes
DIsabIlIty Act 67.8% 61 60.0% 77.8% 66.7% 77.8% 60.0% 50.0% 90
ducatIon 77.8% 70 55.0% 66.7% 100% 92.6% 90.0% 83.3% 90
Health 71.1% 64 55.0% 72.2% 66.7% 81.5% 80.0% 66.7% 90
HousIng 27.8% 25 5.0% 22.2% 0% 59.3% 20.0% 16.7% 90
Human rIghts 56.7% 51 30.0% 50.0% 66.7% 77.8% 70.0% 50.0% 90
famIly 32.2% 29 15.0% 22.2% 33.3% 51.9% 40.0% 25.0% 90
Income 27.8% 25 15.0% 5.6% 33.3% 55.6% 20.0% 25.0% 90
Labour 47.8% 43 25.0% 50.0% 66.7% 66.7% 50.0% 33.3% 90
Mental health 52.2% 47 65.0% 50.0% 33.3% 48.1% 50.0% 50.0% 90
SocIal welfare 67.8% 61 65.0% 44.4% 100% 81.5% 80.0% 58.3% 90
Youth protectIon 30.0% 27 25.0% 16.7% 33.3% 40.7% 30.0% 33.3% 90
25
When undin and moniLorin o prorammes were consid-
ered, variaLions were seen by ae roup. Services or adulLs
seemed Lo be much less developed Lhan were services or
children and adolescenLs. For children and adolescenLs, Lhe
ollowin deparLmenLs were, by ar, Lhe mosL concerned:
educaLion (76.2%), healLh (67.3%), and social welare
TabIe S Departments responsIble for monItorIng or fundIng servIces for chIldren and adolescents
mIddle
Income
Upper-
mIddle
Income
HIgh Income N
ProportIon of
countrIes
Number
of
countrIes
DIsabIlIty 36.7% 54 34.9% 31.0% 33.3% 48.6% 147
ducatIon 76.2% 112 62.8% 69.0% 81.5% 97.1% 147
famIly welfare 34.7% 51 34.9% 26.2% 44.4% 37.1% 147
Health 67.3% 99 51.2% 57.1% 81.5% 88.6% 147
HousIng 15.0% 22 11.6% 9.5% 14.8% 25.7% 147
JustIce 17.7% 26 18.6% 9.5% 18.5% 25.7% 147
Income 12.2% 18 11.6% 2.4% 7.4% 28.6% 147
Labour 19.7% 29 16.3% 16.7% 22.2% 25.7% 147
Mental health 34.7% 51 39.5% 35.7% 33.3% 28.6% 147
SocIal welfare 66.7% 98 58.1% 64.3% 74.1% 74.3% 147
Youth protectIon 18.4% 27 23.3% 7.1% 22.2% 22.9% 147
TabIe 7 Departments responsIble for monItorIng or fundIng servIces for chIldren and adolescents
ast AsIa
urope astern
MedIter-
ranean
Western
PacIhc
N
ProportIon
of
countrIes
Number
of
countrIes
DIsabIlIty 36.7% 54 31.4% 40.0% 0% 48.9% 30.8% 27.3% 147
ducatIon 76.2% 112 68.6% 84.0% 60.0% 83.0% 76.9% 68.2% 147
famIly welfare 34.7% 51 28.6% 48.0% 0% 42.6% 30.8% 22.7% 147
Health 67.3% 99 60.0% 80.0% 60.0% 78.7% 61.5% 45.5% 147
HousIng 15.0% 22 11.4% 16.0% 0% 23.4% 7.7% 9.1% 147
JustIce 17.7% 26 14.3% 16.0% 0% 29.8% 7.7% 9.1% 147
Income 12.2% 18 11.4% 4.0% 0% 23.4% 0% 9.1% 147
Labour 19.7% 29 20.0% 16.0% 0% 25.5% 23.1% 13.6% 147
Mental health 34.7% 51 40.0% 28.0% 40.0% 36.2% 38.5% 27.3% 147
SocIal welfare 66.7% 98 68.6% 56.0% 100% 76.6% 76.9% 40.9% 147
Youth protectIon 18.4% 27 20.0% 8.0% 20.0% 27.7% 0% 18.2% 147
(66.7%). Prorammes or adulLs were mainly ound in
social welare (62.6%) and healLh (56.5%). ln Lerms o
undin or moniLorin services or all ae roups, secLors
such as income, housin, and jusLice were involved in very
ew counLries (ewer Lhan 20%).
26
TabIe 9 Departments responsIble for monItorIng or fundIng servIces for adults (percenLaes o counLries by WHC reions)
ast AsIa
urope astern
MedIter-
ranean
Western
PacIhc
N
ProportIon
of
countrIes
Number
of
countrIes
DIsabIlIty 38.1% 56 28.6% 36.0% 20.0% 46.8% 30.8% 45.5% 147
ducatIon 32.7% 48 31.4% 44.0% 0% 36.2% 30.8% 22.7% 147
famIly welfare 24.5% 26 17.1% 36.0% 0% 29.8% 23.1% 18.2% 147
Health 56.5% 83 42.9% 72.0% 40.0% 70.2% 53.8% 36.4% 147
HousIng 14.3% 21 14.3% 12.0% 0% 23.4% 0% 9.1% 147
JustIce 16.3% 24 11.4% 12.0% 0% 27.7% 7.7% 13.6% 147
Income 15.0% 22 11.4% 8.0% 0% 27.7% 0% 13.6% 147
Labour 34.0% 50 20.0% 28.0% 0% 59.6% 38.5% 13.6% 147
Mental health 34.7% 51 31.4% 36.0% 40% 40.4% 38.5% 22.7% 147
SocIal welfare 62.6% 92 54.3% 44.0% 100% 80.9% 76.9% 40.9% 147
TabIe 10 Departments responsIble for monItorIng or fundIng servIces for adults (percenLaes o counLries by income caLeories)
mIddle
Income
Upper-
mIddle
Income
HIgh Income N
ProportIon of
countrIes
Number
of
countrIes
DIsabIlIty
38.1% 56 34.9% 33.3% 33.3% 51.4% 147
ducatIon
32.7% 48 30.2% 23.8% 40.7% 40.0% 147
famIly welfare
24.5% 36 27.9% 16.7% 29.6% 25.7% 147
Health
56.5% 83 37.2% 50.0% 70.4% 77.1% 147
HousIng
14.3% 21 11.6% 4.8% 14.8% 28.6% 147
JustIce
16.3% 24 14.0% 7.1% 14.8% 31.4% 147
Income
15.0% 22 11.6% 4.8% 11.1% 34.3% 147
Labour
34.0% 50 16.3% 28.6% 37.0% 60.0% 147
Mental health
34.7% 51 32.6% 33.3% 37.0% 37.1% 147
SocIal welfare
62.6% 92 48.8% 52.4% 70.4% 85.7% 147
Youth protectIon
18.4% 27 23.3% 7.1% 22.2% 22.9% 147
Figure 7 Presence of legIslatIon to protect persons
wIth Intellectual dIsabIlItIes (percenLaes o
counLries by income caLeories)
7l.2
57.l
76.2
82.9
70.4
0
20
40
60
80
l00
Low Upper
mlddle
Hlgh Lower
mlddle
world
7l.2
58.8
80.0
50.0
76.9
85.l
60.0
0
20
40
60
80
l00
Afrlca South-Last
Asla
Lastern
Medlteranean
world western Paclc Lurope Amerlcas
Figure 6 Presence of legIslatIon to protect persons
wIth Intellectual dIsabIlItIes (percenLaes o
counLries by WHC reions)
27

"It must be poInted out that there are lots of wrItten laws regardIng the rIghts of the dIsabled persons, IncludIng
those who have Intellectual dIsabIlItIes, unfortunately there Is not any type of sanctIon and supervIsIon on executIon
of the laws."
RespondenL rom Lhe lslamic Republic o lran
LegIslatIon and protectIon
Persons wiLh inLellecLual disabiliLies are known Lo experi-
ence some o Lhe mosL diculL livin condiLions in Lhe world
(Despouy, 1991; RosenLhal & Sundram, 2003; NDRl; ClR).
Reasons or Lhis siLuaLion include sysLemic discriminaLion
and absence o judicial proLecLion (Quinn & Deener, 2002).
When asked i Lheir counLries had a specic naLional policy
or proramme relaLed Lo inLellecLual disabiliLies, o Lhose LhaL
answered yes (59.2%), only 51 counLry respondenLs indicaL-
ed LhaL such a policy or proramme perLained Lo Lhe human
rihLs o persons wiLh inLellecLual disabiliLies (see pae 22).
LegisIation, protection and pubIic awareness campaigns
28
71.2% o respondin counLries (104 o 146 counLries)
indicaLed Lhe presence o a specic law Lo proLecL persons
wiLh inLellecLual disabiliLies. 1he noLion o proLecLion is one
LhaL has lon been held aainsL persons wiLh inLellecLual
disabiliLies, since uardianship laws have hisLorically been
used Lo deny such individuals Lheir rihL Lo make decisions
and Lake parL in civil lie. 8uL someLimes, Lhe civil proLecLion
o a person wiLh inLellecLual disabiliLies and o Lheir asseLs is
necessary when Lhey are unable Lo Lake care o Lhemselves.
AlLhouh Lhe quesLion musL be dealL wiLh case by case, Lhe
absence o leal-proLecLion mechanisms can oLen lead Lo
human rihL abuses o persons wiLh inLellecLual disabiliLies.
CovernmenL-based proLecLive sysLems oversee Lhe civil
proLecLion o persons wiLh inLellecLual disabiliLies Lhrouh
measures LhaL are appropriaLe Lo Lheir condiLion and siLua-
Lion, and ensure LhaL all decisions aecLin Lheir well-bein
and properLy reecL Lheir besL inLeresLs, respecL Lheir rihLs,
and saeuard Lheir auLonomy (see box or recenL sLandard
on Lhis Lopic). 1his Lype o proLecLion mosL oLen involves
Lhe amily and can Lake Lhe orm o a curaLorship, a LuLor-
ship, an advisor Lo an adulL or, mosL commonly, a LuLorship
Lo a minor.
"b) |.] It Is only under the most extraordInary of cIrcumstances that the legal rIght of persons wIth Intellectual dIsa-
bIlItIes to make theIr own decIsIons can be lawfully Interrupted. Any such InterruptIon can only be for a lImIted perIod
of tIme, subject to perIodIc revIew, and pertaInIng only to those specIhc decIsIons for whIch the IndIvIdual has been
found by an Independent and competent authorIty to lack legal capacIty,
c) 1hat Independent and competent authorIty must hnd by clear and convIncIng evIdence that, even wIth adequate
and approprIate supports, all less restrIctIve alternatIves to the appoIntment of a surrogate decIsIon-maker have been
exhausted. 1hat authorIty must be guIded by due process, IncludIng the IndIvIdual's rIght to: notIce, be heard, present
evIdence, IdentIfy experts to testIfy on hIs or her behalf, be represented by one or more well-Informed IndIvIduals who
he or she trusts and chooses, challenge any evIdence at the hearIng, and appeal any adverse hndIng to a hIgher court.
Any surrogate decIsIon-maker must take account of the person's preferences and strIve to make the decIsIon that the
person wIth an Intellectual dIsabIlIty would make If he or she were able to do so."
1he NonLreal DeclaraLion on lnLellecLual DisabiliLies (2004), ArLicle 6
Nap S Presence of legIslatIon to protect persons wIth Intellectual dIsabIlItIes
Yes
No
No InformatIon
29
48.6
40.0
52.0
60.0
59.l
4l.7
36.4
49.3
36.7
44.0
60.0
63.6
4l.7
45.5
47.8
60.0
44.0
40.0
34.l
58.3 59.l
0
20
40
60
80
l00
Figure S Presence of a judIcIal protectIon system (percenLaes o counLries by WHC reions)
48.6
38.5
53.7
36.8
63.6
49.3
75.8
42.3
46.3
34.2
47.8
24.2
6l.5
43.9
63.2
0
20
40
60
80
l00
Figure 9 Presence of a judIcIal protectIon system (percenLaes o counLries by income caLeories)
RespondenLs were also asked Lo indicaLe i special provisions
wiLhin Lhe jusLice sysLem exisLed or oenders wiLh inLellec-
Lual disabiliLies. 1his Lype o proLecLion sysLem is based on Lhe
assumpLion LhaL a person wiLh an inLellecLual disabiliLy who
has been convicLed o a crime by a courL o law mihL be in
need o specic Lypes o supporL oered in deLenLion seLLins.
1here Is In New Zealand a legal framework to dIvert
crImInal offenders who have an Intellectual dIsabIlIty
away from the maInstream crImInal justIce system.
1hIs legIslatIon (the Intellectual DIsabIlIty Compulsory
Care and RehabIlItatIon Act 2003) enables care to be
provIded In secure forensIc servIces co-located wIth
mental health forensIc servIces In the grounds of a
Crown-owned HospItal.
RespondenL rom New Zealand
AlmosL hal Lhe responses indicaLe (48.1%) LhaL no special
provisions or oenders wiLh inLellecLual disabiliLies exisLed
wiLhin Lheir naLional jusLice sysLem. 1his was Lrue or boLh
children and adolescenLs (leislaLion absenL in 44.1% o Lhe
counLries) and or adulLs (absenL in 48.9% o Lhe counLries).
ProtectIon system for people wIth ID - ChIldren/Adolescents
ProtectIon system for people wIth ID - Adults
Absence of protectIon system for people wIth ID
1he presence o such a law was reporLed less oLen in low-
income counLries (57.1%) Lhan in counLries rom oLher
income caLeories (rom 70.4% in upper middle-income
counLries Lo 82.9% in hih-income counLries). ln Lhe same
way, hiher proporLions o counLries in Lurope, Lhe Ameri-
cas, and Lhe LasLern NediLerranean had such laws (85.1%,
80.0%, and 76.9%, respecLively) Lhan did Lhe oLher WHC
reions (SouLh-LasL Asia 60.0%, Arica 58.8%, and Lhe
WesLern Pacic 50.0%).
30
45.9
48.3
52.2
60.0
40.0
4l.7
47.6
5l.l
48.3
65.2
80.0
44.4
4l.7
52.4
48.l
5l.7
34.8
20.0
53.3
50.0
52.4
0
20
40
60
80
l00
Figure 10 Presence of specIal rules for offenders (percenLaes o counLries by WHC reions)
45.9
52 52.6
34.2
47.l
5l.l
6l.8
56
50
39.5
48.l
38.2
44
47.4
60.5
0
20
40
60
80
l00
Figure 11 Presence of specIal rules for offenders (percenLaes o counLries by income caLeories)
PublIc awareness campaIgns
Public awareness campains promulaLe publiciLy or inor-
maLion LhaL supporLs Lhe developmenL o persons wiLh
inLellecLual disabiliLies, in a eneral or specic domain such
as anLi-sLima, social inLeraLion, human rihLs, educaLion,
access Lo employmenL, social inLeraLion, or healLh care.
C Lhe parLicipaLin counLries, 60.3% have carried ouL
public awareness campains. Nore counLries in Lhe hih-
income caLeory (73.5%) reporLed LhaL Lhey had had such
campains Lhan did counLries o low and middle income.
Likewise, more counLries in SouLh-LasL Asia (80.0%) and
Lurope (71.7%) had done such campains Lhan had coun-
Lries in oLher WHC reions. 15% o Lhe respondin coun-
Lries described Lhese campains as recurrin every year.
AlLhouh Lhe quesLion perLained Lo specic public aware-
ness campains on inLellecLual disabiliLies, Lhese campains
were oLen areaLed wiLh eneral disabiliLy-awareness
campains or wiLh Lhe World NenLal HealLh Day. 70 coun-
Lries provided Lhe sloan o a recenL awareness campain
(see pae 31). 1hese media campains rane rom Lhe
inormaLive Lo Lhe provocaLive or even poeLic, and aim Lo
inorm and enae Lhe eneral public on issues o impor-
Lance Lo persons wiLh lD and Lheir amilies.
Presence of specIal rules for offenders - ChIldren/Adolescents
Presence of specIal rules for offenders - Adults
Abscence of rules for offenders
31
Don't DIS my AILI1Y - AusLralia
I am wIllIng, I know, I can - CroaLia
veryone holds the Sun InsIde, only let It shIne. - Ceoria
Accept me, Include me - Hunary
Don't let them grow wIthout educatIon - lndonesia
Do not test only your IntellIgence, test your humanIty - 1he ormer Yuoslav Republic o Nacedonia
DIsabIlIty Is not InabIlIty - Nalawi
All dIfferent, all together - NauriLius
eautIful world together wIth the dIsabled - Republic o Korea
We are dIfferent but not worse - Slovakia
UpholdIng the human rIghts of persons wIth Intellectual dIsabIlIty - SouLh Arica
I am lIke you - Spain
Human rIghts, socIal IntegratIon, health care, educatIon and employment - Syrian Arab Republic
SImply partIcIpatIng - 1he NeLherlands
No dIscrImInatIon for Intellectual dIsabIlIty - Zimbabwe
Financing
Fundin or services or inLellecLual disabiliLies was provided
Lhrouh Lhree main sources: (1) Lax-based undin (76.0%
o counLries), which reers Lo services nanced by eneral
LaxaLion; (2) nancial supporL rom NCCs (68.8%), which
reers Lo supporL by inLernaLional or naLional volunLary
oranizaLions, chariLable roups, service-user roups, advo-
cacy roups, or proessional associaLions; and (3) ouL-o-
pockeL expenses (60.1%), which sinies LhaL services were
purchased by users or Lheir amilies.
1he proporLion o counLries wiLh Lax-based undin was
especially low in low-income counLries (54.8%), com-
pared wiLh counLries rom oLher income caLeories (rane
81.0-88.9%). 1he proporLion o counLries wiLh Lax-based
undin was hihesL in SouLh-LasL Asia (100%), Lurope
(91.5%), and Lhe Americas (84.0%), and Lhe lowesL in
Arica (55.9%) and Lhe WesLern Pacic (63.6%).
76.0
68.8
60.l
l3.3
28.9
32.9
0
20
40
60
80
l00
NGOs Soclal health
lnsurance
Prlvate
lnsurance
Tax-based
fundlng
Lxternal
grants
Out of pocket
Figure 12 Sources of fundIng for servIces
(percenLaes o counLries)
32
TabIe 11 Sources of fundIng for servIces (percenLaes o counLries by WHC reions)
ast AsIa
urope astern
MedIter-
ranean
Western
PacIhc
N
ProportIon
of
countrIes
Number
of
countrIes
1ax-based fundIng 76.0% 111 55.9% 84.0% 100% 91.5% 69.2% 63.6% 146
Out-of-pocket 60.1% 87 70.6% 62.5% 100% 45.7% 76.9% 52.4% 144
SocIal health-Insurance 32.9% 47 11.8% 52.0% 20.0% 48.9% 23.1% 19.0% 143
PrIvate Insurance 13.3% 19 8.8% 20.8% 0% 17.4% 15.4% 4.8% 143
xternal grants 28.9% 41 35.3% 29.2% 100% 17.4% 23.1% 30.0% 142
NGOs 68.8% 99 64.7% 80.0% 100% 58.7% 76.9% 71.4% 144
TabIe 12 Sources of fundIng for servIces (percenLaes o counLries by income caLeories)
mIddle
Income
Upper-
mIddle
Income
HIgh Income N
ProportIon of
countrIes
Number
of
countrIes
1ax-based fundIng 76.0% 111 54.8% 81.0% 88.9% 85.7% 146
Out-of-pocket 60.1% 87 66.7% 47.6% 60.0% 67.6% 143
SocIal health-Insurance 32.9% 47 11.9% 31.0% 50.0% 48.5% 143
PrIvate Insurance 13.3% 19 7.1% 11.9% 12.0% 23.5% 143
xternal grants 28.9% 41 41.5% 31.0% 20.0% 17.6% 142
NGOs 68.8% 99 69.0% 73.8% 80.8% 52.9% 144
TabIe 13 RepartItIon of sources of fundIng for servIces (median percenLaes by WHC reions)
AfrIca AmerIcas South-ast
AsIa
urope astern
MedIter-
ranean
Western
PacIhc
1otal N
1ax-based fundIng 17.5% 50.0% 50.0% 80.0% 80.0% 85.0% 66.0% 83
Out-of-pocket 40.0% 17.5% 10.0% 10.0% 10.0% 30.0% 19.4% 66
SocIal health-Insurance 0.5% 20.0% 45.0% 20.0% 5.0% 35.0% 20.0% 34
PrIvate Insurance 2.0% 5.0% 0.0% 1.3% 2.0% 1.0% 2.0% 13
xternal grants 30.0% 5.0% 3.0% 7.0% 15.0% 20.0% 10.0% 26
NGOs 20.0% 15.0% 10.0% 10.0% 65.0% 15.0% 15.0% 74
1he proporLion o undin or inLellecLual disabiliLy services
provided by dierenL sources may vary reaLly rom one
roup o counLries Lo anoLher one. NeverLheless, Lhe medi-
an o percenLaes conrmed LhaL Lax-based undin was
Lhe mosL imporLanL source o undin or services. Cn Lhis
indicaLor, Arica had a disLincL prole, wiLh Lhe lowesL medi-
ans or Lax-based undin (17.5%) and social healLh insur-
ance (0.5%), and Lhe hihesL or ouL-o-pockeL expenses
(40.0%) and exLernal ranLs (30.0%). 1he role o undin
rom NCCs seemed especially imporLanL in Lhe LasLern
NediLerranean reion (65.0%).
NoLe: Hal o Lhe counLries are over Lhe median percenLae, and hal below.
33
TabIe 14 RepartItIon of sources of fundIng for servIces (median percenLaes by income caLeories)
Low-Income Lower-mIddle
Income
Upper-mIddle
Income
HIgh Income 1otal N
1ax-based fundIng 50.0% 55.0% 70.0% 90.0% 66.0% 83
Out of pocket 16.5% 29.0% 10.0% 5.0% 19.4% 66
SocIal health Insurance 1.5% 20.0% 15.0% 20.0% 20.0% 34
PrIvate Insurance 1.0% 2.0% 7.5% 1.5% 2.0% 13
xternal grants 20.0% 7.5% 12.5% 5.0% 10.0% 26
NGOs 20.0% 15.0% 15.0% 5.0% 15.0% 74
Nap 9 1ax-based fundIng for servIces
Yes
No
No InformatIon
34
56.2
48.6
44.5
22.6
30.8
34.9
43.2
0
20
40
60
80
l00
Subsldles for food,
houslng medlcatlon
and/or transportatlon
Health
securlty
Plscal/Tax
benets
Dlsablllty
penslon
No benets
provlded
Dlrect payment
of money for a
speclc purpose
Soclal
securlty
Figure 13 Presence and nature of government benehts
(percenLaes o counLries)
Nap 10 NGOs as a source of fundIng for servIces
Covernment benets
NosL o Lhe parLicipaLin counLries (77.4%) provided some
orm o overnmenL beneLs Lo adulLs wiLh an inLellecLual
disabiliLy or Lo amilies wiLh a child who had an inLellecLual
disabiliLy. 1hese beneLs Look many dierenL orms and, as
such, came rom numerous sources o more or less equal
imporLance.
Yes
No
No InformatIon
35
TabIe 15 Presence and nature of government benehts (percenLaes o counLries by WHC reions)
ast AsIa
urope astern
MedIter-
ranean
Western
PacIhc
N
ProportIon
of
countrIes
Number
of
countrIes
No benehts provIded 22.6% 33 52.9% 24.0% 0% 0% 23.1% 27.3% 146
DIsabIlIty pensIon 56.2% 82 29.4% 44.0% 60.0% 91.5% 46.2% 40.9% 146
Health securIty 43.2% 63 23.5% 24.0% 40.0% 74.5% 46.2% 27.3% 146
SocIal securIty 44.5% 65 20.6% 44.0% 20.0% 70.2% 46.2% 31.8% 146
SubsIdIes for food, housIng,
medIcatIon, or transporta-
tIon
48.6% 71 26.5% 44.0% 60.0% 68.1% 53.8% 40.9% 146
DIrect payment of money
for a specIhc purpose
34.9% 51 17.6% 40.0% 80.0% 44.7% 30.8% 27.3% 146
fIscal or tax benehts 30.8% 45 14.7% 24.0% 40.0% 46.8% 23.1% 31.8% 146
52.9% 0 Lhe 33 counLries LhaL had no overnmenL beneLs whaLsoever were locaLed in Lhe WHC Arican reion, and
almosL hal were low-income counLries (16 counLries).
TabIe 16 Presence and nature of government benehts (percenLaes o counLries by income caLeories)
mIddle
Income
Upper-
mIddle
Income
HIgh Income N
ProportIon of
countrIes
Number
of
countrIes
No benehts provIded 22.6% 33 50.0% 21.4% 7.4% 2.9% 146
DIsabIlIty pensIon 56.2% 82 33.3% 45.2% 70.4% 85.7% 146
Health securIty 43.2% 63 19.0% 35.7% 44.4% 80.0% 146
SocIal securIty 44.5% 65 11.9% 35.7% 55.6% 85.7% 146
SubsIdIes for food,
housIng, medIcatIon, or
transportatIon
48.6% 71 28.6% 42.9% 48.1% 80.0% 146
DIrect payment of money
for a specIhc purpose
34.9% 51 16.7% 26.2% 48.1% 57.1% 146
fIscal or tax benehts 30.8% 45 14.3% 26.2% 33.3% 54.3% 146
36
Nap 11 Presence of dIsabIlIty pensIon
TabIe 17 Access to government benehts (percenLaes o counLries by WHC reions)
World AfrIca AmerIcas South-ast
AsIa
urope astern
MedIter-
ranean
Western
PacIhc
N
<10% 39.0% 78.3% 57.1% 80.0% 2.4% 50.0% 33.3% 46
11-25% 4.2% 4.3% 4.8% 0% 2.4% 20.0% 0% 5
26-50% 7.6% 4.3% 9.5% 20.0% 2.4% 10.0% 16.7% 9
51-74% 10.2% 8.7% 9.5% 0% 17.1% 0% 5.6% 12
>75% 39.0% 4.3% 19.0% 0% 75.6% 20.0% 44.4% 46
When overnmenL beneLs were provided, coverae varied
reaLly rom one counLry Lo anoLher. 39.0% o parLicipaLin
counLries had hih access Lo such beneLs (i.e. more Lhan
75% o enLiLled individuals or amilies received some orm
o overnmenLal beneLs). However, Lhe same proporLion
o counLries was classed as low access (i.e. less Lhan 10%
o eliible individuals or amilies received any orm o ov-
ernmenLal beneLs. CounLries wiLh low access were mosLly
locaLed in SouLh-LasL Asia (80%) and in Arica (78.3%).
1hese counLries were mainly low income (74.2%); by con-
LrasL, 84.8% o hih-income counLries and 75.6% o Luro-
pean counLries had hih access Lo beneLs.
Yes
No
No InformatIon
37
TabIe 1S Access to government benehts (percenLaes o counLries by income caLeories)
World Low-Income Lower-mIddle
Income
Upper-mIddle
Income
HIgh Income N
<10% 39.0% 74.2% 46.9% 31.8% 3.0% 46
11-25% 4.2% 3.2% 9.4% 4.5% 0.0% 5
26-50% 7.6% 12.9% 9.4% 0.0% 6.1% 9
51-74% 10.2% 0.0% 9.4% 31.8% 6.1% 12
>75% 39.0% 9.7% 25.0% 31.8% 84.8% 46
39.0
4.3
l9.0
44.4
20.0
75.6
0.0
0
20
40
60
80
l00
Afrlca South-Last
Asla
Lastern
Medlteranean
world western Paclc Lurope Amerlcas
Figure 14 HIgh access (>75%) to government benehts
39.0
9.7
25.0
84.8
3l.8
0
20
40
60
80
l00
Low Upper
mlddle
Hlgh Lower
mlddle
world
Figure 15 HIgh access (>75%) to government benehts
5ervices for chiIdren, adoIescents, and aduIts
or auLonomous communiLies (e.. wesLern and norLhern
Luropean counLries, Canada, Spain, USA), or in counLries
where services are reaLly decenLralized and adminisLered aL
Lhe municipal level (e.. 8razil, Sweden). ln Lhese cases, Lhe
respondenL or Lhe counLry had Lo esLablish a sorL o Lrend,
averae, or sLandard.
1his secLion rsL summarises Lhe oranizaLion o services in
Lhe parLicipaLin counLries. lL is ollowed by a descripLion
o available services or adulLs, children, and adolescenLs.
1hese services have been caLeorized in lare secLors. Cne
musL remember LhaL Lhese resulLs are parLicularly aecLed
by bias caused by Lhe use o discreLe daLa. ln considerin
Lhese resulLs, one musL balance mere availabiliLy o services
(which can be minimal) wiLh LerriLorial coverae and socio-
culLural and economic accessibiliLy.
Human rIghts are IndIvIsIble, unIversal, Interdependent
and Inter-connected. 1herefore, the rIght to the hIgh-
est possIble level of physIcal and mental health and
well beIng Is Inter-connected wIth other cIvIl, polItIcal,
economIc, socIal, and cultural rIghts and fundamental
freedoms. for persons wIth Intellectual dIsabIlItIes, as
for other persons, the exercIse of the rIght to health
requIres full socIal InclusIon, an adequate standard of
lIvIng, access to InclusIve educatIon, access to work
justly compensated and access to communIty servIces.
(NonLreal DeclaraLion on lnLellecLual DisabiliLies,
2004, arLicle 4)
ln a survey o provision o services, one musL deal wiLh Lhe
overall model o oranizaLion o services in Lhe counLries
under sLudy. 1he Lask can become very complex in Lerms
o daLa collecLion in counLries under ederal jurisdicLions,
where services are provided by reions, sLaLes, provinces,
38
58.4
5l.6
65.2
40.0
65.2
42.9
6l.l
29.2
35.5
2l.7
60.0
2l.7
50.0
22.2
8.0
6.5
8.7
00.0
8.7
7.l
ll.l
4.4
6.5
4.3
00.0
4.3
00.0
5.6
0
20
40
60
80
l00
Figure 16 Level of government that was responsIble for servIces (percenLaes o counLries by WHC reions)
58.4
50.0
56.4
64.0
65.7
29.2
3l.6
38.5
28.0
l7.l
8.0
l3.2
5.l
4.0
8.6
4.4 5.3
00.0
4.0
8.6
0
20
40
60
80
l00
Figure 17 Level of government that was responsIble for servIces (percenLaes o counLries by income caLeories)
OrganIzatIon of servIces
For mosL (58.4%) o Lhe counLries LhaL responded, Lhe
responsibiliLy or services or persons wiLh inLellecLual dis-
abiliLies was shared beLween levels o overnmenL, irre-
specLive o counLry income level. ln SouLh-LasL Asia and
Lhe LasLern NediLerranean, Lhe mosL common paLLern o
oranizaLion o services was aL Lhe naLional level (60.0%
and 50.0% o counLries, respecLively).
1he survey indicaLed LhaL services or persons wiLh inLellec-
Lual disabiliLies were provided across aL leasL our co-exisLin
modaliLies: LoeLher wiLh services or Lhe eneral populaLion
(86.2%), wiLh menLal healLh services (81.3%), wiLh disabil-
iLy services (84.5%), and services specic or persons wiLh
an inLellecLual disabiliLies (72.0%). 1his diversiLy was noL
aecLed by WHC reion or level o income.
Shared between levels of government
NatIonal level
Local level
RegIonal level
39
8l.3
87.l
83.3
80.0
75.6
90.0
77.8
84.5 83.9
86.4
l00.0
85.7
8l.8
77.8
86.2
79.3
95.2
75.0
83.8
80.0
l00.0
72.0
70.8
72.2
80.0
78.6
83.3
47.l
0
20
40
60
80
l00
Figure 1S OrganIzatIon of servIces (percenLaes o counLries by WHC reions)
8l.3
85.0
87.5
90.9
62.l
84.5
78.9
88.9
83.3
87.l
86.2
75.7
86.2
90.5
96.6
72.0
57.l
80.0
70.0
8l.8
0
20
40
60
80
l00
Figure 19 OrganIzatIon of servIces (percenLaes o counLries by income caLeories)
SpecIhc servIces
Specic services can be oered in insLiLuLional seLLins or
in Lhe communiLy. lnsLiLuLions are bi aciliLies where all
services are provided wiLhin Lhe same seLLin, includin a
place Lo live, work, acLiviLies durin Lhe day, and medical
and psychiaLric care. CommuniLy-based residenLial services
can Lake many orms, rom nursin homes Lo supporL or
independenL livin. 1he pasL decades have wiLnessed a
movemenL rom a compleLe reliance on insLiLuLions Lo com-
muniLy-based services.
1his survey revealed LhaL asylum-Lype insLiLuLions were
presenL in hal Lhe parLicipaLin counLries: Lhese insLiLuLions
were devoLed Lo children and adolescenLs (in 50.7% o Lhe
counLries) or Lo adulLs (in 55.9% o Lhe counLries). lnsLiLu-
Lions or children and adolescenLs were more common in
Lhe LasLern NediLerranean (83.3%), Lurope (71.4%), and
Lhe Americas (52.9%) Lhan Lhey were in SouLh-LasL Asia
(25.0%), Arica (16.7%), and Lhe WesLern Pacic (8.3%).
lnsLiLuLions or adulLs were presenL in all WHC reions
(Lurope, 71.4%; LasLern NediLerranean, 66.7%; Lhe
Americas, 64.3%; Arica, 33.3%; SouLh-LasL Asia, 25.0%;
and WesLern Pacic, 20.0%). Asylum-Lype insLiLuLions or
children and adolescenLs were less common in low-income
counLries (33.3%) Lhan in counLries wiLh an upper middle
level o income (64.7%). 1he lowesL raLes o asylum-Lype
insLiLuLions or adulLs wiLh inLellecLual disabiliLies were seen
in low-income counLries (50%) and hih-income counLries
(47.1%). Hiher raLes were seen in Lhe upper middle income
(68.8%) and Lhe lower-middle income (57.1%) caLeories.
1ogether wIth servIces for persons wIth mental dIsorder
1ogether wIth servIces for persons wIth any kInd of dIsabIlIty
1ogether wIth servIces for general populatIon
SpecIhc servIces for persons wIth Intellectual dIsabIlIty
40
TabIe 19 ResIdentIal servIces for chIldren and adolescents (percenLaes o counLries by WHC reions)
ast AsIa
urope astern
MedIter-
ranean
Western
PacIhc
N
ProportIon
of
countrIes
Number
of
countrIes
Support to Independent
lIvIng "
33.9% 38 29.2% 42.1% 60.0% 37.8% 14.3% 25.0% 112
foster homes 51.4% 57 26.1% 63.2% 25.0% 69.2% 28.6% 47.4% 111
Group homes 50.9% 54 40.9% 45.0% 60.0% 73.5% 14.3% 38.9% 106
NursIng homes 41.3% 38 26.7% 29.4% 0% 62.5% 42.9% 33.3% 92
Asylum-type InstItutIons 50.7% 37 16.7% 52.9% 25.0% 71.4% 83.3% 8.3% 73
TabIe 20 ResIdentIal servIces for chIldren and adolescents (percenLaes o counLries by income caLeories)
mIddle
Income
Upper-
mIddle
Income
HIgh Income N
ProportIon of
countrIes
Number
of
countrIes
lIvIng "
33.9% 38 28.1% 19.2% 27.3% 56.3% 112
foster homes 51.4% 57 29.0% 41.4% 47.6% 86.7% 111
Group homes 50.9% 54 36.7% 33.3% 42.9% 83.9% 106
NursIng homes 41.3% 38 20.0% 36.0% 50.0% 55.6% 92
Asylum-type InstItutIons 50.7% 37 33.3% 52.2% 64.7% 50.0% 73
TabIe 21 ResIdentIal servIces for adults (percenLaes o counLries by WHC reions)
ast AsIa
urope astern
MedIter-
ranean
Western
PacIhc
N
ProportIon
of
countrIes
Number
of
countrIes
lIvIng "
51.4% 57 28.6% 57.9% 60.0% 65.9% 16.7% 47.4% 111
foster homes 34.0% 33 10.0% 44.4% 20.0% 51.5% 0% 31.3% 97
Group homes 52.3% 57 19.0% 52.6% 60.0% 76.9% 25.0% 47.1% 109
NursIng homes 53.1% 51 37.5% 53.3% 20.0% 68.6% 50.0% 47.1% 96
Asylum-type InstItutIons 55.9% 38 33.3% 64.3% 25.0% 71.4% 66.7% 20.0% 68
C Lhe communiLy-based services, osLer homes and roup
homes were Lhe mosL common (51.4% and 50.9%, respec-
Lively) or children and adolescenLs. Nursin homes (53.1%),
roup homes (52.3%), and supporL or independenL livin
(51.4%) were Lhe mosL widespread or adulLs. All Lypes o
communiLy-based aciliLies or children, adolescenLs, and
adulLs were prevalenL in hih-income counLries. 1he avail-
abiliLy o Lhese services increased wiLh level o income.
Soort to inJeenJent living for c/ilJren anJ aJolescents refers to c/ilJren aJolescent w/o liveJ wit/ families anJ receiveJ soort from services.
41
Health servIces
HealLh services include inpaLienL care, primary care, special-
ized services, and physical rehabiliLaLion. From Lhe survey
daLa, Lhese our Lypes o healLh-care services were available
or children, adolescenLs, and adulLs in mosL o Lhe par-
LicipaLin counLries (rane 71.4-87.9%). 1he percenLaes
were reaLesL in hih-income counLries (80-90%) and low-
esL in low-income counLries (60-70%). Primary healLh care
was available in more Lhan 85% o counLries, excepL or
low-income counLries (75.0% or children and adolescenLs
and 70.3% or adulLs). 1he availabiliLy o healLh services
Lended Lo increase wiLh income level.
We observed some dispariLies beLween reions. Special-
ized services or children and adolescenLs were available in
ewer counLries in Lhe WesLern Pacic (63.2%) and in Arica
(65.5%) Lhan Lhey were in oLher reions. 1he same services
were less available or adulLs in SouLh-LasL Asia (50.0%), in
Lhe WesLern Pacic (61.1%), and in Arica (60.7%) Lhan in
oLher WHC reions. AlLhouh counLries in all WHC reions
oered physical rehabiliLaLion or adulLs wiLh inLellecLual
disabiliLies, Lhis service was somewhaL more common in
hih-income counLries Lhan in low-income counLries.
TabIe 22 ResIdentIal servIces for adults (percenLaes o counLries by income caLeories)
mIddle
Income
Upper-
mIddle
Income
HIgh Income N
ProportIon of
countrIes
Number
of
countrIes
lIvIng "
51.4% 57 34.5% 30.8% 45.5% 85.3% 111
foster homes 34.0% 33 14.3% 20.8% 29.4% 67.9% 97
Group homes 52.3% 57 21.4% 40.7% 50.0% 88.2% 109
NursIng homes 53.1% 51 31.8% 44.0% 61.1% 71.0% 96
Asylum-type InstItutIons 55.9% 38 50.0% 57.1% 68.8% 47.1% 68
TabIe 23 Health servIces for chIldren and adolescents (percenLaes o counLries by WHC reions)
ast AsIa
urope astern
MedIter-
ranean
Western
PacIhc
N
ProportIon
of
countrIes
Number
of
countrIes
InpatIent health servIces 71.4% 90 58.6% 72.7% 60.0% 87.5% 72.7% 57.9% 126
PrImary health care 87.9% 116 75.9% 87.0% 100% 95.5% 90.9% 85.0% 132
SpecIalIzed health servIces 76.4% 97 65.5% 72.7% 80.0% 90.7% 77.8% 63.2% 127
PhysIcal RehabIlItatIon 84.1% 111 82.8% 91.3% 80.0% 88.1% 92.3% 65.0% 132
42
TabIe 24 Health servIces for chIldren and adolescents (percenLaes o counLries by income caLeories)
mIddle
Income
Upper-
mIddle
Income
HIgh Income N
ProportIon of
countrIes
Number
of
countrIes
InpatIent health servIces 71.4% 90 56.8% 67.6% 82.6% 84.4% 126
PrImary health care 87.9% 116 75.0% 86.8% 95.8% 97.1% 132
SpecIalIzed health servIces 76.4% 97 63.9% 76.5% 75.0% 90.9% 127
PhysIcal rehabIlItatIon 84.1% 111 73.7% 89.7% 87.0% 87.5% 132
TabIe 25 Health servIces for adults (percenLaes o counLries by WHC reions)
ast AsIa
urope astern
MedIter-
ranean
Western
PacIhc
N
ProportIon
of
countrIes
Number
of
countrIes
InpatIent health servIces 75.0% 90 63.0% 86.4% 40.0% 89.7% 70.0% 58.8% 120
PrImary health care 85.5% 112 70.0% 95.5% 80.0% 93.2% 80.0% 85.0% 131
SpecIalIzed health servIces 73.2% 93 60.7% 81.8% 50.0% 83.7% 80.0% 60.0% 127
PhysIcal rehabIlItatIon 76.6% 95 64.0% 82.6% 80.0% 84.6% 84.6% 63.2% 124
TabIe 26 Health servIces for adults (percenLaes o counLries by income caLeories)
mIddle
Income
Upper-
mIddle
Income
HIgh Income N
ProportIon of
countrIes
Number
of
countrIes
InpatIent health servIces 75.0% 90 64.7% 70.6% 86.4% 83.3% 120
PrImary health care 85.5% 112 70.3% 88.9% 95.7% 91.4% 131
SpecIalIzed health servIces 73.2% 93 60.0% 75.8% 70.8% 85.7% 127
PhysIcal rehabIlItatIon 76.6% 95 60.6% 75.0% 82.6% 90.6% 124
ServIces specIhc to Intellectual dIsabIlItIes
1his secLion encompasses services oered specically Lo
persons wiLh inLellecLual disabiliLies. 8eLween 41.8% and
82.7% o respondenLs indicaLed LhaL services relaLed Lo
inLellecLual disabiliLies (i.e. screenin, assessmenL, and
orienLaLion; early inLervenLion; individual supporL or case
manaemenL; psycholoical and psychiaLric inLervenLions;
psychosocial rehabiliLaLion; and day acLiviLies) were avail-
able or children, adolescenLs, and adulLs. Services or chil-
dren and adolescenLs LhaL were oered in 65% o counLries
or ewer included: screenin, assessmenL, and orienLaLion
in lower middle-income counLries (63.6%) and LasLern
NediLerranean (60.0%) counLries; early inLervenLion in low-
income counLries (62.5%), lower middle income counLries
(65.6%), and in Arica (56.0%); individual supporL or case
manaemenL in low-income counLries (65.6%), lower mid-
dle-income counLries (57.1%), in Arica (61.5%), and in
Lhe Americas (65.0%); psychosocial rehabiliLaLion in Lhe
WesLern Pacic (57.9%); and day acLiviLies in lower middle
income counLries (65.7%), Lhe Americas (59.1%), and Lhe
WesLern Pacic (60.0%).
43
A ap was noLed beLween hih-income counLries and oLher
counLry income caLeories or all Lypes o adulL services.
1hese services were available in more Lhan 75% o hih-
income counLries, buL raned rom 48.4% Lo 83.9% in
counLries rom oLher income caLeories. Nany variaLions
were observed in Lhe availabiliLy o dierenL Lypes o serv-
ices accordin Lo WHC reions; almosL all Lypes o services
were oered in a lesser proporLion o counLries in Arica
Lhan in oLher reions.
TabIe 27 Intellectual dIsabIlItIes servIces for chIldren and adolescents (percenLaes o counLries by WHC reions)
ast AsIa
urope astern
MedIter-
ranean
Western
PacIhc
N
ProportIon
of
countrIes
Number
of
countrIes
ScreenIng, assessment,
or orIentatIon
82.7% 105 86.2% 86.4% 80.0% 85.0% 60.0% 81.0% 127
arly InterventIon 75.4% 92 56.0% 71.4% 100% 85.7% 77.8% 75.0% 122
IndIvIdual support or case
management
71.1% 81 61.5% 65.0% 80.0% 75.0% 71.4% 80.0% 114
SpecIalIzed psychologIcal
or psychIatrIc InterventIons
79.2% 99 73.3% 82.6% 75.0% 83.8% 83.3% 73.7% 125
Psycho-socIal rehabIlItatIon 78.9% 101 86.2% 75.0% 80.0% 82.1% 91.7% 57.9% 128
Day centre or hospItal 72.6% 90 72.0% 59.1% 80.0% 80.5% 90.9% 60.0% 124
TabIe 2S Intellectual dIsabIlItIes servIces for chIldren and adolescents (percenLaes o counLries by income caLeories)
World Low-Income Lower-mIddle
Income
Upper-mIddle
Income
HIgh Income N
ProportIon of
countrIes
Number
of
countrIes
or orIentatIon
82.7% 105 83.3% 63.6% 91.3% 94.3% 127
arly InterventIon 75.4% 92 62.5% 65.6% 78.3% 94.3% 122
management
71.1% 81 65.6% 57.1% 68.2% 90.6% 114
79.2% 99 69.4% 81.3% 82.6% 85.3% 125
PsychosocIal rehabIlItatIon 78.9% 101 83.3% 74.4% 72.7% 83.9% 128
Day centre or hospItal 72.6% 90 67.6% 65.7% 78.3% 81.3% 124
44
TabIe 29 Intellectual dIsabIlItIes servIces for adults (percenLaes o counLries by WHC reions)
ast AsIa
urope astern
MedIter-
ranean
Western
PacIhc
N
ProportIon
of
countrIes
Number
of
countrIes
or orIentatIon
69.4% 77 68.0% 80.0% 60.0% 70.6% 50.0% 68.4% 111
management
68.6% 72 64.0% 72.2% 75.0% 67.6% 50.0% 77.8% 105
79.7% 94 83.3% 90.9% 50.0% 80.0% 72.7% 70.6% 118
PsychosocIal rehabIlItatIon 76.4% 97 63.0% 83.3% 80.0% 85.4% 75.0% 66.7% 127
Day centre 70.8% 85 47.8% 57.1% 80.0% 95.2% 70.0% 57.9% 120
TabIe 30 Intellectual dIsabIlItIes servIces for adults (percenLaes o counLries by income caLeories)
World Low
Income
Lower
mIddle
Income
Upper
mIddle
Income
HIgh Income N
ProportIon of
countrIes
Number of
countrIes
or orIentatIon
69.4% 77 71.9% 52.0% 68.2% 81.3% 111
management
68.6% 72 66.7% 56.5% 63.6% 83.3% 105
79.7% 94 76.7% 83.9% 83.3% 75.8% 118
PsychosocIal
rehabIlItatIon
76.4% 97 69.7% 68.4% 78.3% 90.9% 127
Day centre 70.8% 85 48.4% 66.7% 72.7% 94.1% 120
ducatIon
Since 1994, UNLSCC has promoLed Lhe principle o inclu-
sive educaLion or children wiLh special needs (Salamanca
sLaLemenL) (UNLSCC, 1994; 1996/1997; 1999). Accordin
Lo Lhis approach, children and adolescenLs wiLh inLellecLual
disabiliLies should aLLend reular school classes and acLiviLies
wiLh Lhose wiLhouL inLellecLual disabiliLies However, dierenL
Lypes o educaLion sysLems or children and adolescenLs wiLh
inLellecLual disabiliLies now co-exisL - i.e. kinderarLens (se-
reaLed or inclusive), special schools, special classes in reular
schools, supporL in reular classes, and homebound services.
"Research IndIcates that facIlItIes for early chIldhood
educatIon that could have served as the foundatIon
for the ImplementatIon of |InclusIve educatIon] pro-
grammes for chIldren wIth dIsabIlItIes In many |devel-
opIng countrIes] are non exIstent. |.] Regular schools
wIth InclusIve orIentatIon have been consIdered the
most effectIve means of combatIng dIscrImInatory attI-
tudes, creatIng welcomIng communItIes, buIldIng an
InclusIve socIety and achIevIng educatIon for all."
(Lleweke & Rodda, 2002)
45
1he ndins showed Lhe coexisLence o sereaLed and
inclusive educaLion worldwide: 91.3% o counLries have
special schools or children wiLh inLellecLual disabiliLies;
76.3% have special classes or Lhese children; and in 70.9%
Lhey are supporLed in reular classes. ln all reions and
roups o counLries accordin Lo income levels, propor-
Lions o counLries wiLh special schools and special classes
or children wiLh inLellecLual disabiliLies were hiher Lhan
Lhose in which children were inLeraLed in reular classes.
1he only excepLion was Lhe WesLern Pacic, where inLera-
Lion in reular classes was available in 75% o Lhe counLries.
Homebound services were available in less Lhan 50% o
counLries, and mainly in SouLh-LasL Asia (80.0%), Lurope
(68.4%), and Lhe Americas (60.0%).
TabIe 31 ducatIonal opportunItIes for chIldren and adolescents (percenLaes o counLries by WHC reions)
World
AfrIca AmerIcas South-ast
AsIa
urope astern
MedIte-
rranean
Western
PacIhc
N
ProportIon
of
countrIes
Number of
countrIes
SpecIal schools 91.3% 126 87.1% 100% 100% 97.8% 100% 68.2% 138
SpecIal class In regular
or Integrated school
76.3% 100 67.9% 85.0% 80.0% 84.4% 58.3% 71.4% 131
Support In regular
class
70.9% 90 61.5% 81.0% 60.0% 75.6% 50.0% 75.0% 127
Homebound servIces 49.5% 54 38.1% 60.0% 80.0% 68.4% 0% 22.2% 109
Preschool or
kIndergarten
75.0% 90 56.5% 76.5% 100% 88.9% 63.6% 65.0% 120
TabIe 32 ducatIonal opportunItIes for chIldren and adolescents (percenLaes o counLries by income caLeories)
World Low Income Lower mIddle
Income
Upper mIddle
Income
HIgh Income N
ProportIon of
countrIes
Number of
countrIes
SpecIal schools 91.3% 126 82.1% 94.9% 96.0% 94.3% 138
SpecIal class In regular
or Integrated school
76.3% 100 59.5% 77.1% 83.3% 88.6% 131
Support In regular class 70.9% 90 50.0% 69.7% 78.3% 88.6% 127
Homebound servIces 49.5% 54 38.7% 50.0% 55.0% 56.7% 109
Preschool or
kIndergarten
75.0% 90 46.9% 74.2% 81.8% 97.1% 120
1he daLa suesLed LhaL adulL-educaLion prorammes and
proessional Lrainin were scarce. 49.5% o Lhe parLicipaL-
in counLries provided adulL-educaLion prorammes, 47.2%
liLeracy prorammes, and 66.1% proessional-Lrainin
prorammes. Level o income aecLed Lhe availabiliLy o all
prorammes. 1he proporLions o low-income counLries LhaL
oered adulL-educaLion prorammes, liLeracy prorammes,
and proessional-Lrainin prorammes (29.6%, 21.4%, and
48.1%, respecLively) diered widely rom Lhe proporLions
o hih-income counLries LhaL did so (84.4%, 71.0%, and
93.9%, respecLively).
46
TabIe 33 ducatIonal opportunItIes for adults (percenLaes o counLries by WHC reions)
ast AsIa
urope astern
MedIterranean
Western
PacIhc
N
ProportIon
of
countrIes
Number of
countrIes
LIteracy programme 47.2% 50 27.3% 55.6% 75.0% 54.5% 50.0% 42.9% 106
Adult educatIon
programme
49.5% 53 33.3% 50.0% 50.0% 69.4% 37.5% 35.0% 107
ProfessIonal traInIng 66.1% 76 45.0% 66.7% 80.0% 82.5% 77.8% 45.0% 115
TabIe 34 ducatIonal opportunItIes for adults (percenLaes o counLries by income caLeories)
World Low Income Lower mIddle
Income
Upper mIddle
Income
HIgh Income N
ProportIon of
countrIes
Number of
countrIes
LIteracy programme 47.2% 50 21.4% 41.4% 55.6% 71.0% 106
Adult educatIon
programme
49.5% 53 29.6% 32.3% 47.1% 84.4% 107
ProfessIonal traInIng 66.1% 76 48.1% 55.9% 61.9% 93.9% 115
Work
CccupaLional, vocaLional, and work services include assess-
menL and enhancemenL o work-relaLed skills, aLLiLudes and
behaviours, job ndin and developmenL, and provision o
job experience. AlLhouh prorammes aimed aL develop-
menL o work skills, shelLered employmenL, and supporLed
employmenL were available in mosL counLries (66.1%,
66.9%, and 63% o counLries, respecLively), respond-
enLs indicaLed LhaL work sLaLions were less available Lhan
were oLher services (44.4%). Work sLaLions are inLeraLed
enclaves wiLhin indusLry LhaL allow persons wiLh inLellecLual
disabiliLies Lo work wiLh crews LhaL do noL have disabiliLies.
1hese work sLaLions were scarce in Lhe LasLern NediLer-
ranean (33.3%) and Arica (18.2%), somewhaL presenL
in Lhe WesLern Pacic (45%), Lurope (55.9%), and Lhe
Americas (52.4%), and were mosL widespread in SouLh-LasL
Asia (60%). 1he Lypes o available services increased wiLh
counLries' levels o income.
TabIe 35 OccupatIonal, vocatIonal, or work servIces (percenLaes o counLries by WHC reions)
ast AsIa
urope astern
MedIterranean
Western
PacIhc
N
ProportIon
of countrIes
Number of
countrIes
Sheltered
employment
66.9% 83 29.2% 81.8% 60.0% 86.4% 62.5% 57.1% 124
Work statIons 44.4% 48 18.2% 52.4% 60.0% 55.9% 33.3% 45.0% 108
Supported
employment
63.0% 75 39.1% 61.9% 60.0% 77.5% 60.0% 65.0% 119
General work skIlls,
traInIng,
or development
66.1% 76 47.8% 61.9% 80.0% 77.8% 80.0% 60.0% 115
47
TabIe 37 Other types of servIces for chIldren and adolescents (percenLaes o counLries by WHC reions)
ast AsIa
urope astern
MedIter-
ranean
Western
PacIhc
N
ProportIon
of
countrIes
Number
of
countrIes
LeIsure actIvItIes 73.4% 91 72.4% 81.0% 60.0% 82.1% 66.7% 57.1% 124
1ransportatIon 59.8% 73 40.7% 63.2% 0% 77.5% 63.6% 60.0% 122
AssIstIve technology 54.4% 62 34.8% 55.0% 40.0% 73.0% 50.0% 47.4% 114
RIghts or advocacy support 73.3% 88 70.4% 68.2% 80.0% 86.8% 80.0% 50.0% 120
Supply of meal or food 52.9% 54 50.0% 55.6% 80.0% 60.0% 44.4% 38.9% 102
TabIe 36 OccupatIonal, vocatIonal, or work servIces (percenLaes o counLries by income caLeories)
World Low Income Lower
mIddle
Income
Upper
mIddle
Income
HIgh Income N
ProportIon of
countrIes
Number
of
countrIes
Sheltered employment 66.9% 83 16.1% 72.2% 84.0% 96.9% 124
Work statIons 44.4% 48 19.4% 40.7% 36.8% 77.4% 108
Supported employment 63.0% 75 29.0% 56.3% 65.2% 100.0% 119
General work skIlls,
traInIng, or development
66.1% 76 35.5% 53.3% 76.2% 100.0% 115
TabIe 3S Other types of servIces for chIldren and adolescents (percenLaes o counLries by income caLeories)
mIddle
Income
Upper
mIddle
Income
HIgh Income N
ProportIon of
countrIes
Number
of
countrIes
LeIsure actIvItIes 73.4% 91 55.6% 67.7% 68.2% 100.0% 124
1ransportatIon 59.8% 73 21.2% 56.3% 69.6% 94.1% 122
AssIstIve technology 54.4% 62 25.8% 41.4% 52.4% 93.9% 114
RIghts or advocacy support 73.3% 88 61.8% 66.7% 75.0% 93.1% 120
Supply of meal or food 52.9% 54 46.7% 42.9% 52.2% 76.2% 102
Other servIces
RespondenLs were asked abouL Lhe availabiliLy o services
oLher Lhan Lhose in Lhe specied caLeories, such as leisure
acLiviLies, LransporLaLion, assisLive Lechnoloy, rihLs and
advocacy supporL, or supply o ood and oLher basic neces-
siLies. 1he daLa showed LhaL more Lhan 70% o counLries
oered acLiviLies relaLed Lo supporL or promoLion o rihLs
and advocacy or adulLs, children, and adolescenLs.
48
ServIces to famIlIes
Families play a crucial parL in supporL or adulLs, children,
and adolescenLs wiLh inLellecLual disabiliLies. Nore oLen LhaL
noL, Lheirs is Lhe only Lype o supporL available (lnclusion
lnLernaLional, 2006). 1he daLa suesLed LhaL Lhe services
mosL available across reions and income levels were psy-
choloical supporL and counsellin (in 73.5% o Lhe parLici-
paLin counLries), educaLion abouL inLellecLual disabiliLies
(66.7%), and supporL or rihLs and advocacy (57.1%).
RespiLe care (in 29.9% o parLicipaLin counLries) and home
aid (44.2%), provide periodic relie Lo amily members and
riends who care or persons wiLh inLellecLual disabiliLies;
Lhese services were mosL commonly available only in hih-
income counLries (in 74.3% and 85.7% o hih-income
counLries, respecLively).
TabIe 39 Other types of servIces for adults (percenLaes o counLries by WHC reions)
ast AsIa
urope astern
MedIter-
ranean
Western
PacIhc
N
ProportIon
of
countrIes
Number
of
countrIes
LeIsure actIvItIes 68.1% 79 43.5% 81.0% 25.0% 78.4% 60.0% 76.2% 116
1ransportatIon 50.9% 58 17.4% 58.8% 0% 68.4% 54.5% 60.0% 114
AssIstIve technology 49.6% 56 22.7% 52.4% 40.0% 73.0% 40.0% 38.9% 113
Supply of meal or food 9.5% 50 26.3% 57.1% 60.0% 58.1% 57.1% 44.4% 101
TabIe 40 Other types of servIces for adults (percenLaes o counLries by income caLeories)
mIddle
Income
Upper
mIddle
Income
HIgh Income N
ProportIon of
countrIes
Number
of
countrIes
LeIsure actIvItIes 68.1% 79 32.3% 60.7% 77.3% 100.0% 116
1ransportatIon 50.9% 58 10.0% 37.9% 57.1% 94.1% 114
AssIstIve technology 49.6% 56 16.7% 25.0% 59.1% 93.9% 113
Supply of meal or food 49.5% 50 30.8% 40.7% 47.8% 80.0% 101
TabIe 41 ServIces to famIlIes of persons wIth Intellectual dIsabIlItIes (percenLaes o counLries by WHC reions)
ast AsIa
urope astern
MedIter-
ranean
Western
PacIhc
N
ProportIon
of
countrIes
Number
of
countrIes
PsychologIcal support or
counsellIng
73.5% 108 60.0% 72.0% 80.0% 87.2% 69.2% 68.2% 147
ducatIon about Intellectual
dIsabIlItIes
66.7% 98 42.9% 68.0% 80.0% 80.9% 76.9% 63.6% 147
RespIte care 29.9% 44 14.3% 12.0% 20.0% 55.3% 15.4% 31.8% 147
Home aId 44.2% 65 31.4% 28.0% 40.0% 61.7% 38.5% 50.0% 147
49
TabIe 42 ServIces to famIlIes of persons wIth Intellectual dIsabIlItIes (percenLaes o counLries by income caLeories)
mIddle
Income
Upper
mIddle
Income
HIgh Income N
ProportIon of
countrIes
Number
of
countrIes
PsychologIcal support or
counsellIng
73.5% 108 60.5% 61.9% 81.5% 97.1% 147
ducatIon about Intellectual
dIsabIlItIes
66.7% 98 46.5% 59.5% 74.1% 94.3% 147
RespIte care 29.9% 44 9.3% 16.7% 25.9% 74.3% 147
Home aId 44.2% 65 27.9% 28.6% 40.7% 85.7% 147
1he presence o services alone does noL uaranLee access
Lo Lhem. Accordin Lo Lhe respondenLs, in more Lhan hal
o parLicipaLin counLries, Lhree acLors aecLed wheLher
services could be accessed in a Limely manner: locaLion o
paLienLs in Lerms o urban versus rural seLLins (56.4%),
eoraphical locaLion (53.9%), and Lhe socioeconomic sLa-
Lus o Lhe persons needin care (51.8%). Ceoraphical ac-
Lors (urban versus rural and LerriLory) aecLed access Lo care
in rouhly Lhe same proporLion o counLries, independenLly
o Lheir level o income (rane 51.9-70.0%), wiLh hih-
income counLries as an excepLion (access was available in
32.4% o counLries or boLh urban and rural locaLions and
28.6% or LerriLories). Ceoraphical locaLion was especially
imporLanL in SouLh-LasL Asia aecLin access Lo services in
80.0% o counLries and in Lhe Americas, where eoraphi-
cal locaLion (75.0%) and Lhe divide beLween urban and
rural locaLion (75.0%) were idenLied by Lhe respondin
counLries as barriers Lo access Lo services.
1he eecL o socioeconomic sLaLus on access Lo services was
relaLed Lo Lhe level o income o counLries. ln low-income
counLries, respondenLs rom 75% o counLries indicaLed LhaL
socioeconomic sLaLus had a reaL eecL on access Lo services;
Lhe siLuaLion was similar in 66.7% o lower-middle-income
counLries, compared wiLh only 14.3% o hih-income
counLries. Socioeconomic sLaLus had an eecL on access Lo
services in several counLries in SouLh-LasL Asia (80.0%), Lhe
Americas (79.2%), and Arica (78.1%), buL on very ew
counLries in Lurope (20%).
56.4
53.9
5l.8
5.8
l4.3
0
20
40
60
80
l00
Geographlcal
locatlon
Lthnlclty Pellglon Soclo-
economlcal
status
Urban/Pural
locatlon
Figure 20 factors that had an Impact on access
to servIces (percenLaes o counLries)
Amon oLher acLors menLioned by respondenLs, eLhniciLy
seemed Lo have more o an eecL on access Lo services (in
14.3% counLries) Lhan did reliion (5.8%). 1he counLries
in which eLhniciLy was Lhe reaLesL barrier Lo access were
enerally in Lhe Americas (25%), Arica (22.6%), and Lhe
WesLern Pacic (18.2%), as well as in upper middle-income
counLries (19.2%) and low-income counLries (17.9%).
CLher acLors LhaL aecLed access Lo inLellecLual disabiliLies
services in a Limely manner were illiLeracy, inorance o Lhe
exisLence o services, lanuae diculLies, sex, educaLion o
Lhe parenLs, and Lhe level o mobiliLy o Lhe person seekin
Lhese services, includin Lheir level o disabiliLy and Lhe ae
o Lhe person or Lheir careiver.
Factors that had an impact on access to services
50
TabIe 43 factors that had an Impact on access to servIces (percenLaes o counLries by WHC reions)
ast AsIa
urope astern
MedIter-
ranean
Western
PacIhc
N
ProportIon
of
countrIes
Number
of
countrIes
SocIoeconomIc status 51.8% 73 78.1% 79.2% 80.0% 20.0% 53.8% 40.9% 141
GeographIcal locatIon 53.9% 76 64.5% 75.0% 80.0% 45.7% 46.2% 31.8% 141
Urban or rural locatIon 56.4% 79 65.6% 75.0% 60.0% 44.4% 61.5% 42.9% 140
thnIcIty 14.3% 20 22.6% 25.0% 0% 4.4% 7.7% 18.2% 140
RelIgIon 5.8% 8 9.7% 4.2% 0% 0% 7.7% 14.3% 138
TabIe 44 factors that had an Impact on access to servIces (percenLaes o counLries by income caLeories)
mIddle
Income
Upper
mIddle
Income
HIgh Income N
ProportIon of
countrIes
Number
of
countrIes
SocIoeconomIc status 51.8% 73 75.0% 66.7% 44.4% 14.3% 141
GeographIcal locatIon 53.9% 76 61.5% 70.0% 51.9% 28.6% 141
Urban or rural locatIon 56.4% 79 65.0% 67.5% 57.7% 32.4% 140
thnIcIty 14.3% 20 17.9% 12.2% 19.2% 8.8% 140
RelIgIon 5.8% 8 7.7% 5.1% 11.5% 0.0% 138
Nap 12 Impact of socIoeconomIc status on access to servIces
Great Impact
Some/no Impact
No InformatIon
51
Nap 13 Impact of geographIcal locatIon on access to servIces
Nap 14 Impact of urban or rural locatIon on access to servIces
Great Impact
Some/no Impact
No InformatIon
Great Impact
Some/no Impact
No InformatIon
52
67.l
6l.8
64.0
l00.0
76.6
46.2
63.6
6l.6
44.l
.
84.0
60.0
70.2
l5.4
72.7
6l.0
23.5
56.0
60.0
9l.5
53.8
63.6
57.5
l7.6
56.0
60.0
87.2
6l.5
54.5
0
20
40
60
80
l00
Figure 21 StrategIes to prevent Intellectual dIsabIlItIes (percenLaes o counLries by WHC reions)
Figure 22 StrategIes to prevent Intellectual dIsabIlItIes (percenLaes o counLries by income caLeories)
67.l
59.5
69.0
66.7
74.3
6l.6
42.9
47.6
77.8
88.6
6l.0
26.2
59.5
66.7
l00.0
57.5
2l.4
52.4
70.4
97.l
0
20
40
60
80
l00
Prevention
AlLhouh in 60% o cases o inLellecLual disabiliLies Lhe caus-
es are unknown, our caLeories o acLors LhaL can occur
beore, durin, or aLer birLh have been idenLied as eLioloi-
cal acLors: eneLic disorders, chromosomal disorders, bioloi-
cal and oranic causes, and environmenLal causes. AcLions
can be underLaken Lo alleviaLe Lhe eecL o some o Lhese
acLors. RespondenLs suesLed LhaL a subsLanLial percenLae
o parLicipaLin counLries had implemenLed prevenLion sLraL-
eies, across all income levels and WHC reions. 1hese sLraL-
eies included supplemenLaLion o dieL by iodinaLion o salLs
or olic acid in bread (in 67.1% o counLries); prorammes
or prevenLion o alcohol or dru abuse durin prenancy
(61.6%); eneLic counsellin and prenaLal LesLin (61.0%);
and LesLs Lo deLecL phenylkeLonuria, lead, or hypoLhyroidism
(57.5%). 1hese sLraLeies were more common in hih-
income counLries Lhan in low-income counLries.
"1hough many of the causes of developmental dIs-
abIlItIes are understood and preventable, proven
methods of preventIon, such as early screenIng and
InterventIon, nutrItIonal InterventIons, ImmunIza-
tIon agaInst rubella and other InfectIons capable of
causIng developmental dIsabIlItIes, and chIld safety
programmes, are not beIng fully Implemented In
developIng countrIes."
(Durkin, 2002)
SupplementatIon of dIet
Programmes on alcohol/drug abuse durIng pregnancy
GenetIc counselIng and prenatal testIng
1ests to detect phenylketonurIa, lead or hypothyroIdIsm
53
ProfessIonal servIce provIders
DaLa abouL proessionals who were Lhe mosL involved in
workin wiLh persons wiLh inLellecLual disabiliLies showed
Lhe very wide rane o inLervenLions and supporL LhaL
were oered Lo Lhese persons. AlLhouh special educaLors
were idenLied by Lhe mosL respondenLs as Lhe roup mosL
85.6
78.l
75.3
67.8
6l.6
56.8
39.7
80.l
76.7
7l.2
66.4
58.9
50.0
0
20
40
60
80
l00
Soclal
workers
Teachers Pedlatrlclans
Speclal
educators
Art/muslc theraplsts Psychologlsts Psychlatrlsts
Physlclans Occupatlonal
theraplsts
Prlmary health
care workers
Nurses Physlotheraplsts Speech and language
theraplsts
Figure 23 ProfessIonals Involved In provIsIon of servIces to persons wIth Intellectual dIsabIlItIes (percenLaes o counLries)
closely associaLed wiLh persons wiLh inLellecLual disabiliLies
(85.6%), social workers (80.1%), psychiaLrisLs (78.1%),
Leachers (76.7%), and psycholoisLs (75.3%) were also
menLioned, irrespecLive o income caLeory or WHC reion
o Lhe respondenL.
Standards of care for professIonals
SLandards o care and pracLices are uidelines LhaL esLablish
minimum sLandards Lo ensure proper care and inLerven-
Lions or persons wiLh inLellecLual disabiliLies. 1hey pro-
vide a meLhod or judin such pracLices and services,
and improve Lheir qualiLy and appropriaLeness. 53.0% o
respondenLs idenLied Lhe presence o such sLandards in
overnmenL oranizaLions and 59.9% in privaLe ones. We
idenLied no dierences beLween counLries wiLh dierenL
levels o income or rom dierenL WHC reions in Lerms o
sLandards o care aL Lhe level o overnmenL oranizaLions.
However, Lhe proporLion o counLries in which overnmenL
and privaLe oranizaLions had sLandards o care varied rom
36% Lo 76.9% in dierenL WHC reions.
When asked how Lhese sLandards were mainLained, respond-
enLs indicaLed our principal sLraLeies: in-service Lrainin
(69.5%), use o clinical pracLice uidelines (61.1%), proes-
sional cerLicaLion and mainLenance o compeLency (58.9%),
and clinical supervision o workers (57.9%). 1hese resulLs
varied in dierenL WHC reions: in-service Lrainin was Lhe
mosL commonly reporLed meLhod o mainLainin sLandards
o care in Arica (77.3%), Lhe WesLern Pacic (75.0%),
Lurope (73.0%), and SouLh-LasL Asia (66.7%). Clinical prac-
Lice uidelines were Lhe meLhod o choice in Lhe Americas
(85.7%), whereas clinical supervision was mosL oLen used in
SouLh-LasL Asia (100%). ln Lurope, proessional cerLicaLion
and mainLenance o compeLence were avoured (75.7%).
ProfessionaI service providers and standards of care
54
56.9
65.2
54.2
40.0
65.0
54.5
40.0
53.0
50.0
36.0
60.0
76.9
45.5
36.4
0
20
40
60
80
l00
Figure 24 Presence of standards for professIonals (percenLaes o counLries by WHC reions)
56.9
5l.6
47.2
66.7 65.6
53.0
42.5
5l.2
68.2
58.l
0
20
40
60
80
l00
Figure 25 Presence of standards for professIonals (percenLaes o counLries by income caLeories)
TabIe 45 Ways to maIntaIn standards of care and practIces (percenLaes o counLries by WHC reions)
ast AsIa
urope astern
MedIter-
ranean
Western
PacIhc
N
ProportIon
of
countrIes
Number
of
countrIes
ProfessIonal certIhcatIon
and maIntenance of
competency
58.9% 56 45.5% 57.1% 33.3% 75.7% 14.3% 66.7% 95
In-servIce traInIng 69.5% 66 77.3% 64.3% 66.7% 73.0% 28.6% 75.0% 95
ClInIcal supervIsIon of
workers
57.9% 55 54.5% 64.3% 100% 59.5% 42.9% 50.0% 95
Use of clInIcal practIce
guIdelInes
61.1% 58 50.0% 85.7% 66.7% 67.6% 28.6% 50.0% 95
Standards for professIonals workIng for prIvate organIzatIons
Standards for professIonals workIng for governmental organIzatIons
55
TabIe 46 Ways to maIntaIn standards of care and practIces (percenLaes o counLries by income caLeories)
mIddle
Income
Upper
mIddle
Income
HIgh Income N
ProportIon of
countrIes
Number
of
countrIes
ProfessIonal certIhcatIon
and maIntenance of
competency
58.9% 56 52.0% 55.6% 66.7% 64.0% 95
In-servIce traInIng 69.5% 66 72.0% 63.0% 77.8% 68.0% 95
ClInIcal supervIsIon of
workers
57.9% 55 60.0% 55.6% 50.0% 64.0% 95
Use of clInIcal practIce
guIdelInes
61.1% 58 52.0% 66.7% 55.6% 68.0% 95
Training
ln-service Lrainin reers Lo services oered Lo proessionals
who work wiLh persons wiLh inLellecLual disabiliLies durin
Lheir work hours or durin paid exLra-hours work. Respond-
enLs mosLly idenLied Lhe special educaLors (76%) as Lhe
proessionals who had Lhe mosL opporLuniLy or in-service
Lrainin, alLhouh in some reions, Lhis sLaLus was shared
wiLh social workers (LasLern NediLerranean, SouLh-LasL
Asia), occupaLional LherapisLs, speech LherapisLs, psychia-
LrisLs, psycholoisLs (LasLern NediLerranean), and Leachers
(SouLh-easL Asia). ln more Lhan hal o counLries, in-service
Lrainin was oered Lo social workers (64.4%), Leachers
(61.6%), psycholoisLs (61%), and psychiaLrisLs (56.2%).
1hus, in Lhe reaLesL number o respondin counLries,
proessionals who were mosL involved wiLh persons wiLh
inLellecLual disabiliLies were Lhose mosL likely Lo be oered
in-service Lrainin. However, Lhe acL LhaL Lhis Lrainin was
oered only in a ew counLries Lo paediaLricians (36.3%),
primary healLh-care workers (37.0%), and physicians
(39.0%), mihL be a maLLer or concern.
"Iceland has |a] unIversIty educated professIon 'Devel-
opmental 1herapIsts', who are educated to up to PhD
level to provIde support servIces for chIldren, youths,
and adults wIth Intellectual ImpaIrment. 1hIs profes-
sIon works In all spaces where one hnds persons
wIth Intellectual ImpaIrment and wIth, If approprIate,
theIr famIlIes. |.] A new scIentIhc held of study has
recently been Incorporated In one of our unIversItIes:
dIsabIlIty studIes and socIal models (courses avaIlable
at undergraduate level at the faculty of socIal scIences)
and graduate programs at MA and PhD levels."
RespondenL rom lceland
56
66.4
67.8
58.9
7l.2
56.8
50.0
78.l
75.5
85.6
6l.6
80.l
39.7
76.7
39.0
43.8 44.5
36.3
39.0
37.0
56.2
6l.0
76.0
47.3
64.4
25.3
6l.6
35.6
39.7
28.8
32.2 3l.5
2l.9
37.7
39.0
5l.4
30.8
37.0
l2.3
37.0
0
20
40
60
80
l00
Physlclans Psychlatrlsts Prlmary health
care workers
Physlotheraplsts Pedlatrlclans Occupatlonal
theraplsts
Nurses
0
20
40
60
80
l00
Psychologlsts Teachers Art/muslc theraplsts Soclal workers Speech and language
theraplsts
Speclal educators
Figure 26 1raInIng for professIonals Involved In provIdIng servIces for persons wIth ID (percenLaes o counLries)
RespondenLs reporLed LhaL ew underraduaLe or raduaLe
Lrainin modules in inLellecLual disabiliLies were available or
incorporaLed inLo curricula wiLhin Lheir counLry. When such
a curriculum did exisL aL Lhe underraduaLe level, iL was
mosL commonly oered Lo special educaLors (51.4%), nurs-
es (39.7%), psycholoisLs (39.0%), psychiaLrisLs (37.7%),
or social workers (37.0%). A raduaLe curriculum was
oered mainly Lo psychiaLrisLs (52.7% o counLries), special
educaLors (52.1%), and psycholoisLs (46.6%).
ProfessIonals most Involved In workIng wIth persons wIth ID
Presence of In-servIce ID traInIng
Presence of undergraduate traInIng modules
57
TabIe 47 In-servIce traInIng for professIonals (percenLaes o counLries by WHC reions)
ast AsIa
urope astern
MedIter-
ranean
Western
PacIhc
N
ProportIon
of
countrIes
Number
of
countrIes
PhysIcIans 39.0% 57 32.4% 40.0% 40.0% 44.7% 46.2% 31.8% 146
Nurses 43.8% 64 41.2% 44.0% 40.0% 48.9% 38.5% 40.9% 146
OccupatIonal therapIsts 44.5% 65 26.5% 48.0% 60.0% 46.8% 69.2% 45.5% 146
PedIatrIcIans 36.3% 53 29.4% 32.0% 40.0% 38.3% 38.5% 45.5% 146
PhysIotherapIsts 39.0% 57 26.5% 48.0% 40.0% 40.4% 53.8% 36.4% 146
PrImary health-care workers 37.0% 54 35.3% 28.0% 60.0% 34.0% 46.2% 45.5% 146
PsychIatrIsts 56.2% 82 50.0% 60.0% 40.0% 59.6% 76.9% 45.5% 146
PsychologIsts 61.0% 89 50.0% 68.0% 40.0% 70.2% 76.9% 45.5% 146
SpecIal educators 76.0% 111 73.5% 84.0% 100.0% 80.9% 61.5% 63.6% 146
Speech and language
therapIsts
47.3% 69 23.5% 40.0% 60.0% 66.0% 69.2% 36.4% 146
SocIal workers 64.4% 94 64.7% 56.0% 100% 63.8% 76.9% 59.1% 146
Art or musIc therapIsts 25.3% 37 17.6% 16.0% 60.0% 38.3% 15.4% 18.2% 146
1eachers 61.6% 90 55.9% 64.0% 100% 59.6% 61.5% 63.6% 146
TabIe 4S In-servIce traInIng for professIonals (percenLaes o counLries by income caLeories)
mIddle
Income
Upper
mIddle
Income
HIgh Income N
ProportIon of
countrIes
Number
of
countrIes
PhysIcIans 39.0% 57 42.9% 28.6% 25.9% 57.1% 146
Nurses 43.8% 64 45.2% 35.7% 29.6% 62.9% 146
OccupatIonal therapIsts 44.5% 65 26.2% 33.3% 48.1% 77.1% 146
PedIatrIcIans 36.3% 53 45.2% 19.0% 29.6% 51.4% 146
PhysIotherapIsts 39.0% 57 31.0% 33.3% 37.0% 57.1% 146
PrImary health-care workers 37.0% 54 42.9% 31.0% 33.3% 40.0% 146
PsychIatrIsts 56.2% 82 59.5% 57.1% 44.4% 60.0% 146
PsychologIsts 61.0% 89 52.4% 57.1% 55.6% 80.0% 146
SpecIal educators 76.0% 111 69.0% 69.0% 92.6% 80.0% 146
Speech and language
therapIsts
47.3% 69 26.2% 45.2% 48.1% 74.3% 146
SocIal workers 64.4% 49 61.9% 57.1% 70.4% 71.4% 146
Art or musIc therapIsts 25.3% 37 21.4% 11.9% 22.2% 48.6% 146
1eachers 61.6% 90 61.9% 66.7% 40.7% 71.4% 146
58
TabIe 49 Undergraduate traInIng (percenLaes o counLries by WHC reions)
ast AsIa
urope astern
MedIter-
ranean
Western
PacIhc
N
ProportIon
of
countrIes
Number
of
countrIes
PhysIcIans 35.6% 52 32.4% 32.0% 80.0% 34.0% 46.2% 31.8% 146
Nurses 39.7% 58 35.3% 36.0% 80.0% 36.2% 61.5% 36.4% 146
PedIatrIcIans 32.2% 47 29.4% 24.0% 60.0% 38.3% 30.8% 27.3% 146
PsychIatrIsts 37.7% 55 32.4% 32.0% 40.0% 46.8% 46.2% 27.3% 146
PsychologIsts 39.0% 57 26.5% 56.0% 60.0% 34.0% 61.5% 31.8% 146
Speech and language
therapIsts
30.8% 45 8.8% 28.0% 60.0% 46.8% 38.5% 22.7% 146
SocIal workers 37.0% 54 38.2% 28.0% 100% 34.0% 61.5% 22.7% 146
Art or musIc therapIsts 12.3% 18 11.8% 12.0% 0% 17.0% 0% 13.6% 146
1eachers 37.0% 54 38.2% 40.0% 100% 31.9% 23.1% 36.4% 146
TabIe 50 Undergraduate traInIng (percenLaes o counLries by income caLeories)
mIddle
Income
Upper
mIddle
Income
HIgh Income N
ProportIon of
countrIes
Number
of
countrIes
PhysIcIans 35.6% 52 35.7% 40.5% 29.6% 34.3% 146
Nurses 39.7% 58 38.1% 40.5% 29.6% 48.6% 146
PedIatrIcIans 32.2% 47 31.0% 38.1% 18.5% 37.1% 146
PsychIatrIsts 37.7% 55 40.5% 42.9% 25.9% 37.1% 146
PsychologIsts 39.0% 57 35.7% 45.2% 40.7% 34.3% 146
Speech and language
therapIsts
30.8% 45 14.3% 31.0% 33.3% 48.6% 146
SocIal workers 37.0% 54 28.6% 35.7% 37.0% 48.6% 146
1eachers 37.0% 54 38.1% 31.0% 29.6% 48.6% 146
59
TabIe 51 Graduate traInIng (percenLaes o counLries by WHC reions)
ast AsIa
urope astern
MedIter-
ranean
Western
PacIhc
N
ProportIon
of
countrIes
Number
of
countrIes
PhysIcIans 29.5% 43 35.3% 28.0% 40.0% 17.0% 38.5% 40.9% 146
Nurses 24.7% 36 20.6% 20.0% 60.0% 17.0% 46.2% 31.8% 146
PedIatrIcIans 31.5% 46 32.4% 32.0% 60.0% 21.3% 38.5% 40.9% 146
PsychIatrIsts 52.7% 77 50.0% 56.0% 60.0% 46.8% 76.9% 50.0% 146
PsychologIsts 46.6% 68 38.2% 56.0% 60.0% 38.3% 69.2% 50.0% 146
Speech and language
therapIsts
32.9% 48 17.6% 20.0% 40.0% 44.7% 53.8% 31.8% 146
SocIal workers 34.2% 50 35.3% 36.0% 60.0% 25.5% 53.8% 31.8% 146
Art or musIc therapIsts 11.0% 16 5.9% 16.0% 0% 12.8% 0% 18.2% 146
1eachers 32.9% 48 23.5% 28.0% 80.0% 29.8% 23.1% 54.5% 146
TabIe 52 Graduate traInIng (percenLaes o counLries by income caLeories)
mIddle
Income
Upper
mIddle
Income
HIgh Income N
ProportIon of
countrIes
Number
of
countrIes
PhysIcIans 29.5% 43 40.5% 21.4% 29.6% 25.7% 146
Nurses 24.7% 36 26.2% 31.0% 18.5% 20.0% 146
PedIatrIcIans 31.5% 46 38.1% 31.0% 2220.0% 31.4% 146
PsychIatrIsts 52.7% 77 54.8% 64.3% 40.7% 45.7% 146
PsychologIsts 46.6% 68 47.6% 57.1% 33.3% 42.9% 146
Speech and language
therapIsts
32.9% 48 26.2% 38.1% 40.7% 28.6% 146
SocIal workers 34.2% 50 35.7% 33.3% 33.3% 34.3% 146
1eachers 32.9% 48 31.0% 35.7% 22.2% 40.0% 146
60
88.2 88.2 88.0
l00.0
95.7
92.3
66.7
62.2
69.0
48.0
80.0
60.5
92.3
50.0
0
20
40
60
80
l00
Figure 27 Presence of NGOs and InternatIonal organIzatIons actIve In the held of ID
88.2
83.3
85.4
88.5
97.l
62.2
69.4 69.2
6l.5
47.l
0
20
40
60
80
l00
Figure 2S Presence of NGOs and InternatIonal organIzatIons actIve In the held of ID
NCCs are naLional or local rassrooL oranizaLions o a vol-
unLary naLure (e.. chariLable roups, service-user roups,
parenL roups, advocacy roups, and proessional associa-
Lions); alLhouh Lhey are someLimes aLLached Lo inLerna-
Lional NCCs. lnLernaLional oranizaLions are inLernaLional
aencies, such as UNLSCC or WHC, or ederaLions or asso-
ciaLions o naLional oranizaLions.
Accordin Lo Lhe daLa, NCCs were acLive in 88.2% o
counLries and inLernaLional oranizaLions in 62.2%.
1he percenLaes do noL vary much accordin Lo level o
income or WHC reion. lnLernaLional oranizaLions were in
ewer hih-income counLries (47.1%) Lhan in counLries o
oLher income levels (61.5-69.4%). lnLernaLional oraniza-
Lions were more acLive in Lhe LasLern NediLerranean (92.3%)
and SouLh-LasL Asia (80%) Lhan in Lurope (60.5%), Lhe
WesLern Pacic (50%), and Lhe Americas (48.0%).
NGOs actIve In the held of Intellectual dIsabIlItIes
InternatIonal organIzatIons actIve on the held of Intellectual dIsabIlItIes
The roIe of NCOs and internationaI organizations
61
1he six main domains o NCCs' acLiviLies were: educaLion
(80.2%); supporL, sel-help, and empowermenL (76.2%);
advocacy (73.8%); rehabiliLaLion (73.8%); amily (69.8%);
and direcL services (65.1%). LducaLion was Lhe main secLor
o NCC acLiviLy in Arica (83.3%), Lhe Americas (95.5%), Lhe
LasLern NediLerranean (90.9%), and SouLh-LasL Asia (100%).
However, educaLion was ollowed, someLimes very closely, by
TabIe 53 DomaIns of NGOs' actIvItIes (percenLaes o counLries by WHC reions)
ast AsIa
urope astern
MedIter-
ranean
Western
PacIhc
N
ProportIon
of
countrIes
Number
of
countrIes
Advocacy 73.8% 93 66.7% 68.2% 40.0% 81.4% 81.8% 80.0% 126
DIrect servIces 65.1% 82 36.7% 77.3% 80.0% 74.4% 72.7% 66.7% 126
ducatIon 80.2% 101 83.3% 95.5% 100% 67.4% 90.9% 73.3% 126
famIly 69.8% 88 60.0% 81.8% 80.0% 74.4% 54.5% 66.7% 126
Health 59.5% 75 60.0% 77.3% 40.0% 48.8% 81.8% 53.3% 126
HousIng 30.2% 38 13.3% 22.7% 0% 58.1% 9.1% 20.0% 126
RehabIlItatIon 73.8% 93 73.3% 81.8% 100% 69.8% 72.7% 66.7% 126
Work/ employment 59.5% 75 40.0% 68.2% 80.0% 65.1% 54.5% 66.7% 126
Human rIghts traInIng 50.0% 63 46.7% 40.9% 0% 65.1% 27.3% 60.0% 126
PolIcy and systems
development
49.2% 62 43.3% 40.9% 0% 72.1% 9.1% 53.3% 126
PreventIon 42.1% 53 43.3% 50.0% 20.0% 39.5% 54.5% 33.3% 126
ProfessIonal development 50.8% 64 43.3% 45.5% 60.0% 65.1% 54.5% 26.7% 126
Support/self-help/
empowerment
76.2% 96 73.3% 81.8% 80.0% 81.4% 63.6% 66.7% 126
supporL, sel-help, and empowermenL (Arica, Lhe Americas),
rehabiliLaLion (Arica, Lhe Americas, SouLh-LasL Asia), work
and employmenL (SouLh-LasL Asia), and amily (Lhe Americas,
SouLh-LasL Asia). We noLed LhaL in Lurope and in Lhe WesLern
Pacic, educaLion (67.4% and 73.3%, respecLively) was
lower Lhan advocacy (81.4% and 80.0%, respecLively).
LducaLion represenLed Lhe main secLor o acLiviLy or NCCs
LhaL were acLive in low-income (79.4%), lower-middle
income (83.3%), and upper middle income (91.3%) coun-
Lries. RehabiliLaLion was equally imporLanL Lo educaLion in
upper middle-income counLries. SupporL, sel-help, and em-
powermenL and advocacy were ranked second in low-income
counLries (boLh 73.5%), and rehabiliLaLion was ranked second
in lower-middle-income counLries (80.6%). ln hih-income
counLries, advocacy was Lhe main recipienL o Lhe endeavours
o NCCs (93.9%), ollowed by policy and sysLems develop-
menL, and supporL, sel-help, and empowermenL (81.8%).
62
TabIe 54 DomaIns of NGOs' actIvItIes (percenLaes o counLries by income caLeories)
mIddle
Income
Upper
mIddle
Income
HIgh Income N
ProportIon of
countrIes
Number
of
countrIes
Advocacy 73.8% 93 73.5% 58.3% 69.6% 93.9% 126
DIrect servIces 65.1% 82 50.0% 69.4% 69.6% 72.7% 126
ducatIon 80.2% 101 79.4% 83.3% 91.3% 69.7% 126
famIly 69.8% 88 70.6% 66.7% 73.9% 69.7% 126
Health 59.5% 75 61.8% 69.4% 52.2% 51.5% 126
HousIng 30.2% 38 8.8% 19.4% 34.8% 60.6% 126
RehabIlItatIon 73.8% 93 67.6% 80.6% 91.3% 60.6% 126
Work/ employment 59.5% 75 38.2% 50.0% 78.3% 78.8% 126
Human rIghts traInIng 50.0% 63 41.2% 33.3% 60.9% 69.7% 126
PolIcy and systems
development
49.2% 62 38.2% 33.3% 43.5% 81.8% 126
PreventIon 42.1% 53 38.2% 38.9% 43.5% 48.5% 126
ProfessIonal development 50.8% 64 41.2% 41.7% 52.2% 69.7% 126
Support/self-help/
empowerment
76.2% 96 73.5% 66.7% 87.0% 81.8% 126
80.2
59.5
73.8
50.0
42.l
76.2
65.l
69.8
30.2
59.5
73.8
49.2
50.8 5l.6
34.4
46.2
49.5
3l.2
48.4
37.6
28.0
l0.8
30.l
65.6
5l.6
4l.9
0
20
40
60
80
l00
Dlrect servlces Pamlly Houslng
Advocacy Support/Self-help
Lmpowerment
Health Lducatlon
work/Lmployment Pollcy and systems
development
Professlonal
development
Pehabllltatlon Preventlon Human rlghts
tralnlng
Figure 29 DomaIns of NGOs' and InternatIonal organIzatIons' actIvItIes (percenLaes o counLries)
NGOs' actIvItIes
InternatIonal organIzatIons' actIvItIes
63
Advocacy represenLed Lhe major secLor o acLiviLies by inLer-
naLional oranizaLion or Lhe WHC reions o Arica (68.0%),
Lhe Americas (75.0% ex-aquo wiLh policy and sysLems devel-
opmenL), and Lurope (62.1%). ln Lhe LasLern NediLerranean,
inLernaLional oranizaLions were heavily involved in healLh-re-
laLed acLiviLies or persons wiLh inLellecLual disabiliLy (75.0%),
whereas in SouLh-LasL Asia, educaLion and rehabiliLaLion
were Lhe Lwo main acLiviLies (75.0%). ln Lhe WesLern Pacic,
TabIe 55 DomaIns of InternatIonal organIzatIons' actIvItIes (percenLaes by WHC reions)
ast AsIa
urope astern
MedIter-
ranean
Western
PacIhc
N
ProportIon
of
countrIes
Number
of
countrIes
Advocacy 65.6% 61 68.0% 75.0% 50.0% 62.1% 66.7% 63.6% 93
DIrect servIces 37.6% 35 16.0% 41.7% 25.0% 48.3% 66.7% 27.3% 93
ducatIon 51.6% 48 40.0% 50.0% 75.0% 51.7% 66.7% 54.5% 93
famIly 28.0% 26 32.0% 25.0% 25.0% 24.1% 33.3% 27.3% 93
Health 34.4% 32 32.0% 50.0% 25.0% 17.2% 75.0% 27.3% 93
HousIng 10.8% 10 8.0% 0% 0% 20.7% 0% 18.2% 93
RehabIlItatIon 46.2% 43 40.0% 25.0% 75.0% 51.7% 58.3% 45.5% 93
Work/employment 30.1% 28 12.0% 25.0% 25.0% 44.8% 25.0% 45.5% 93
Human rIghts traInIng 49.5% 46 48.0% 58.3% 0% 51.7% 41.7% 63.6% 93
PolIcy and systems
development
51.6% 48 44.0% 75.0% 25.0% 51.7% 50.0% 54.5% 93
PreventIon 31.2% 29 36.0% 41.7% 25.0% 20.7% 50.0% 18.2% 93
ProfessIonal development 41.9% 39 40.0% 58.3% 50.0% 34.5% 33.3% 54.5% 93
Support/self-help/
empowerment
48.4% 45 44.0% 50.0% 25.0% 51.7% 33.3% 72.7% 93
advocacy and human rihLs Lrainin (boLh 63.6%) were
second Lo supporL, sel-help, and empowermenL (72.7%).
Advocacy and developmenL o policy and sysLems were
Lhe main secLors o acLiviLy or inLernaLional oranizaLions
LhaL were acLive in hih-income counLries (boLh 70.6%).
ln lower-middle-income counLries, supporL, sel-help, and
empowermenL (62.1%) was Lhe main secLor o inLernaLional
oranizaLion acLiviLies.
64
TabIe 56 DomaIns of InternatIonal organIzatIons' actIvItIes (percenLaes by income caLeories)
mIddle
Income
Upper
mIddle
Income
HIgh Income N
ProportIon of
countrIes
Number
of
countrIes
Advocacy 65.6% 61 63.3% 55.2% 82.4% 70.6% 93
DIrect servIces 37.6% 35 23.3% 44.8% 58.8% 29.4% 93
ducatIon 51.6% 48 43.3% 51.7% 58.8% 58.8% 93
famIly 28.0% 26 30.0% 27.6% 35.3% 17.6% 93
Health 34.4% 32 40.0% 27.6% 41.2% 29.4% 93
HousIng 10.8% 10 3.3% 3.4% 29.4% 17.6% 93
RehabIlItatIon 46.2% 43 36.7% 55.2% 47.1% 47.1% 93
Work/ employment 30.1% 28 10.0% 27.6% 41.2% 58.8% 93
Human rIghts traInIng 49.5% 46 46.7% 37.9% 70.6% 52.9% 93
PolIcy and systems
development
51.6% 48 40.0% 44.8% 64.7% 70.6% 93
PreventIon 31.2% 29 36.7% 24.1% 23.5% 41.2% 93
ProfessIonal development 41.9% 39 36.7% 44.8% 35.3% 52.9% 93
Support/self-help/
empowerment
48.4% 45 33.3% 62.1% 47.1% 52.9% 93
TabIe 57 AvaIlabIlIty of publIcatIons on servIces for Intellectual dIsabIlItIes (percenLaes o counLries by WHC reions)
ast AsIa
urope astern
MedIter-
ranean
Western
PacIhc
N
ProportIon
of
countrIes
Number
of
countrIes
Presence of publIcatIons
on Intellectual dIsabIlItIes
servIces
59.0% 79 32.3% 45.8% 80.0% 78.0% 72.7% 63.6% 134
Nine respondenLs indicaLed acLiviLies in Lhe "oLher" caLeo-
ry. 1hese acLiviLies included inrasLrucLure projecLs (consLruc-
Lion or renovaLion o schools, houses, hospiLals, day and
day-care cenLres), mobilizaLion Lrainin, parenL-Lo-parenL
supporL Lrainin, and provision o meals and basic necessi-
Lies such as cloLhin.
Documentation and research
1he daLa obLained rom projecL respondenLs showed LhaL
41.0% o counLries did noL seem Lo have any publicaLions on
services or inLellecLual disabiliLies; Lhe percenLae o coun-
Lries in Lhis siLuaLion was hihesL in low-income (61.5%)
and Arican (67.7%) counLries.
65
We noLed LhaL less Lhan 50% o parLicipaLin counLries
reporLed some daLa every year abouL inLellecLual disabiliLies
(48.6%), and only a Lhird o counLries collecLed epidemio-
TabIe 5S AvaIlabIlIty of publIcatIons on servIces for Intellectual dIsabIlItIes (percenLaes o counLries by income caLeories)
mIddle
Income
Upper
mIddle
Income
HIgh Income N
ProportIon of
countrIes
Number
of
countrIes
Presence of publIcatIons
on Intellectual dIsabIlItIes
servIces
59.0% 79 38.5% 60.0% 50.0% 90.3% 134
48.6
35.5
43.6
60.0
57.8
46.2
52.0
32.4
30.0
20.8
0.0
42.2
23.l
40.9
37.9
25.0
29.2
20.0
56.8
23.l
40.9
68.6
5l.6
54.2
l00.0
86.7
84.6
54.5
0
20
40
60
80
l00
Figure 30 Research and data on ID (percenLaes o counLries by WHC reions)
48.6
30.8
55.3
50.0
60.0
32.4
28.2 28.6
37.5
38.2 37.9
30.8
22.0
38.5
64.7
68.6
55.0
58.5
72.0
94.l
0
20
40
60
80
l00
Figure 31 Research and data on ID (percenLaes o counLries by income caLeories)
Annual Reports IncludIng data on Intellectual dIsabIlItIes
pIdemIologIcal InformatIon
Data collectIon system on Intellectual dIsabIlItIes
Research on Intellectual dIsabIlItIes
loical inormaLion (32.4%). Cnly 32.4% o counLries could
rely on epidemioloical Lrends or on inormaLion sysLems Lo
obLain daLa abouL services.
66
Nap 15 Presence of research on ID
68.6% o respondenLs indicaLed LhaL research on inLellecLual
disabiliLies was done in Lheir respecLive counLries. Research
acLiviLies occurred mainly in hih-income counLries (94.1%),
SouLh-LasL Asia (100%), Lurope (86.7%), and Lhe LasLern
NediLerranean (84.6%). Cnly 28 counLries reporLed havin
aL leasL one research cenLre on inLellecLual disabiliLies. 1he
research was mainly done wiLh Lhe supporL o Lhe universi-
Lies (65.0%), NCCs (58.3%), and overnmenLs (50.5%)
Open-ended comments
1he lasL iLem in Lhe quesLionnaire was open-ended;
respondenLs were asked i Lhey had any commenLs on Lhe
quesLionnaire or oLher inormaLion LhaL Lhey wanLed Lo add.
Here we presenL a selecLion o Lhese qualiLaLive commenLs,
as a complemenL Lo Lhe quanLiLaLive daLa. 1hey provide
some insihLs inLo specic poliLical, social, economic, and
hisLorical circumsLances LhaL are relevanL Lo resources or
people wiLh inLellecLual disabiliLies. 1hey oer Lhe advan-
Lae o emphasizin Lhe siLuaLion in Lhe respondenLs' own
words. 1hey are presenLed accordin Lo dierenL caLeories
o counLry income. 1hese commenLs have been slihLly
ediLed, and some have been LranslaLed inLo Lnlish.
Low-Income countrIes
Afghanistan
AhanisLan has been aL war or more Lhan Lwo decades.
Here you cannoL nd healLh aciliLies, even or Lhe eneral
populaLion. [.] Very liLLle has been done or inLellecLual
disabiliLy. NeiLher overnmenLal nor nonovernmenLal
oranizaLions have any specic proramme Lo care or per-
sons wiLh inLellecLual disabiliLy. Cnly some NCCs are oer-
in services or children wiLh special needs.
Cambodia
Families have Lo Lake care o Lheir own [.], because Lhey
have some belie LhaL menLal disabiliLy is Lhe karma or eve-
ryLhin Lhey have done in Lheir pasL lie. [1hey] sLill believe
LhaL only Lhe monk or Lhe LradiLional healer can LreaL and
help Lhem. [.] Cambodia sLill lacks a sysLem or supporLin
persons wiLh menLal disabiliLies. Nany parenLs who have
children [.] complain abouL poverLy more Lhan Lhey do
abouL Lhe way o [Lakin] care o Lheir children. Some lock
Lhe child in Lhe house and o ouL Lo run Lheir businesses.
RepubIic of the Congo
[1here is a] very imporLanL lack o human resources, LoeLh-
er wiLh Lhe absence o naLional policies or Lrainin, as well
as reLiremenL o Lrained sLa who are noL bein replaced,
liLLle public undin, liLLle parLicipaLion o naLional NCCs
Yes
No
No InformatIon
67
wiLh reard Lo undin (mainly ouLside undin), low parLic-
ipaLion raLe rom amilies, [and an] absence o associaLions
or amilies and users.
Ethiopia
lnLellecLual disabiliLy is Lhe leasL addressed area in Lhe coun-
Lry. 8asic research Lo nd ouL Lhe exLenL o Lhe problem
should be an urenL Lask while special prorammes or
[persons wiLh inLellecLual] disabiliLies are esLablished. WHC
should ure and encourae iLs member counLries, especially
Lhose aecLed by naLural disasLers and disasLers creaLed by
human acLiviLy, Lo ocus on childhood developmenLal dis-
orders includin inLellecLual disabiliLy. Sharin o resources
and experLise is whaL is demanded by Lhe poor counLries o
Lhe world.
Cambia
[.] Lhere is no currenL or xed insLiLuLion LhaL specializes
in menLal reLardaLion sLudies. RaLher, we are enaed in
LreaLmenL and prevenLion, [.] Specic vaccines Lo avoid
ouLbreak o cerLain diseases LhaL [.] brin abouL disabiliLies
[.] beore or aLer prenancies or beore or aLer birLh.
1haL's why Lhere is no specic analysis [or] accuraLe daLa
sysLem. Since Cambia is a small counLry [.], iL doesn'L
or can'L Lake up any research insLiLuLions [.]. 8uL we do
[oer] rehabiliLaLion meLhods while counsellin on inLellec-
Lual disabiliLies in educaLion, healLh and leisure [.], sporLs,
educaLion, work, and employmenL, as or normal ciLizens.
Kenya
1here is a pauciLy o inormaLion and ew daLabases aL a
naLional level or inLellecLual disabiliLies. Hopeully, we will
develop a naLional policy, leislaLion, and prorammes or
inLellecLual disabiliLies. 1his process [should involve] mulLidis-
ciplinary and inLersecLoral collaboraLion. However, we lack
Lhe resources, especially undin and Lechnical assisLance.
Nicaragua
LorLs made by NCCs, inLernaLional oranizaLions, and Lhe
sLaLe are minimal when compared wiLh Lhe hue number
o persons wiLh inLellecLual disabiliLies LhaL lack services in
[areas] such as healLh, educaLion, housin, social welare,
social securiLy, work, eLc. lnLellecLual disabiliLy is parL o Lhe
roup o disabiliLies LhaL is leasL prioriLized, Lhe one LhaL is
Lhe leasL Laken inLo accounL, and Lhe one LhaL does noL raise
iLs voice Lo deend iLsel and hL back or iLs own ood.
[.] AnoLher problem is Lhe acL LhaL in Nicaraua, inLel-
lecLual disabiliLy is rearded as a healLh problem, wiLhouL a
Lransversal approach, which limiLs acLions and policies LhaL
should be elaboraLed on Lo obLain undamenLal claims or
Lhis caLeory o Lhe populaLion.
Nigeria
1here is very liLLle inormaLion available abouL inLellecLual
disabiliLies. For now, Lhe ocus is more on physical disabili-
Lies. 1here is no coordinaLed or concerLed eorL Lo look inLo
Lhe area o inLellecLual disabiliLies aL presenL.
Pakistan
ln PakisLan Lhere is noL any mechanism o neLworkin, col-
laboraLion, and inormaLion sharin in Lhe area o disabiliLy.
[.] Lhe disabiliLy eld is inored viorously by all sLake-
holders [.]. 1hereore, iL is [.] Lime we all join LoeLher Lo
improve Lhe livelihood o persons wiLh disabiliLies, includin
Lhose wiLh inLellecLual disabiliLies.
Papua New Cuinea
[.] Papua New Cuinea is makin proress in reard Lo
services or persons wiLh disabiliLies in eneral. ln 1993, Lhe
CovernmenL adopLed a policy o inclusive educaLion which
covers all children. [.] CommuniLy-based rehabiliLaLion is
Lhe declared direcLion or Lhe uLure [.] and has been or
Lhe pasL 15 years. ln Lhis conLexL, alLhouh inLellecLual dis-
abiliLies has noL received any specic ocus in Papua New
Cuinea, Lhe ouLlook o Lhe CovernmenL and oranized soci-
eLy or persons wiLh disabiliLies is enerally posiLive. Services
in inclusive educaLion and communiLy-based rehabiliLaLion
[.] have mulLiplied sLeadily in Lhe pasL 10 years [.].
5enegaI
Specic vocaLional Lrainin does noL exisL in Seneal, or
example or psycholoisLs, occupaLional LherapisLs, physi-
oLherapisLs, or speech LherapisLs. 1hereore, we do noL know
abouL Lheir preraduaLe Lrainin. Cne o Lhe major problems
LhaL we have is [a] lack o a daLabase in Lhe healLh secLor.
1he daLa [are] scaLLered and ramenLed and are [.] noL
naLional. lL is possible LhaL inLernaLional NCCs are acLive in
menLal disabiliLy buL i Lhey are, we have noL noLiced.
United RepubIic of Tanzania
ln 1anzania Lhese disabiliLies, Lo millions o peasanLs and
workers, are a bad omen Lo Lhe clan concerned and a curse
Lo Lhe parenLs. And as Lhe Arican woman occupies a leal
posiLion in Lhe LradiLional social ladder, Lhe moLher is always
Lhe ineviLable vicLim o speculaLion and disreard. As such,
inLermarriaes wiLh clans who have children wiLh menLal
disabiliLies are classied, socially, as bein Laboo [.] Con-
cealmenL o inormaLion abouL Lhe prevalence o disabiliLy
in individual LradiLional amilies ives rise Lo a lack o knowl-
ede abouL exLenL and maniLude o disabiliLy problems
and, Lhereore, sLies iniLiaLives and eorLs or relevanL daLa
collecLion meLhods Lo eL sLarLed and developed. [.] 8y-
and-by, however, [Lhere] was rowin awareness amon
Lhe eneral public, CovernmenL, and reliious leaders. 1he
UN, above all, resorLed Lo much criLical discussion abouL
68
Lhe plihL o marinalized roupins (children and adoles-
cenLs); a maLLer which helped Lo esLablish sLandard rules Lo
deal wiLh Lhe problem o menLal disabiliLy more eecLively.
PrivaLe and reliious NCCs have been esLablished wiLh Lhe
supporL o donors all over Lhe world.
Zambia
1here is no specic policy or research LhaL has been done in
Zambia specically or persons wiLh inLellecLual disabiliLies.
[.] [1hereore], iL is imperaLive Lo mobilize resources or
comprehensive daLa collecLion prorammes and Lo seL up a
daLa collecLion sysLem, i proper and Limely plannin is Lo be
enhanced on issues o persons wiLh inLellecLual disabiliLies.
Lower mIddle-Income countrIes
BoIivia
[.] DespiLe Lhe exisLence o laws [.], Lheir implemenLaLion
is minimal because o Lhe lack o knowlede on Lhis subjecL
and Lhe lack o human and economic resources. 1he major-
iLy o Lhese cenLres deliver services up Lo persons aed 18
years. From Lhere on, Lhey o back home or Lo bein.
Bosnia and Herzegovina
8eore Lhe war (1992-95), 8osnia and Herzeovina as con-
sLiLuenL parLs o Yuoslavia, [had] insLiLuLions or children
wiLh menLal disorders. 1hese insLiLuLions sLill exisL. However
Lhese persons are no loner children or youLhs. 1hey have
become adulLs, buL yeL Lhey sLill reside in Lhe very same
insLiLuLions. [.] 1oday [.] even healLhy and youn per-
sons are unemployed, [so Lhere are no unds available or]
shelLered workshops, educaLional prorammes, sel-help,
liLeracy prorammes, rehabiliLaLion, prevenLion, carin or
healLhy lie sLyles, advocacy supporL, or oLher manners o
supporL or menLally disabled.
CoIombia
ln Colombia some advances [.] can be ound in 8ooLa,
whereas in Lhe resL o Lhe counLry, Lhere are isolaLed eorLs
aL Lhe round level and always rom Lhe privaLe secLor or
rom Lhe NCCs.
Cook lsIands
1here is no specic service or persons wiLh inLellecLual dis-
abiliLy, alLhouh Lhere is an NCC roup LhaL is workin or
all persons wiLh disabiliLies [.].
CuatemaIa
lL is necessary Lo supporL research, which musL be sysLema-
Lized. We musL manae Lo improve Lhe communicaLion o
Lhe inormaLion wiLh reard Lo Lhese aspecLs o inLellecLual
disabiliLies. lnLernaLional oranizaLions should provide inor-
maLion rom sLudies and resulLs [.] in oLher counLries.
lsIamic RepubIic of lran
[.] lL musL be poinLed ouL LhaL [noL] all Lhe inLellecLually
disabled children in lran [.] o Lo school, Lhe comparison
beLween Lhe prevalence raLe and Lhe number o Lhe inLel-
lecLually disabled sLudenLs [.] shows LhaL only 3.18% o
Lhis populaLion eL Lhe opporLuniLy Lo receive Lhe special
educaLion [.]. All Lhe lranian sLudenLs includin Lhe sLu-
denLs wiLh inLellecLual disabiliLy have Lhe rihL o receivin
ree and mandaLory educaLion or 8 years [.]. 1he maxi-
mum ae o reisLraLion or a sLudenL wiLh inLellecLual dis-
abiliLy in Lhe rsL rade o Lhe primary school is 13 years.
Romania
NosL o Lhe daLa we can nd are eneral presenLaLions o
all disabiliLies and Lhere are jusL a ew reerrals Lo persons
wiLh inLellecLual disabiliLy.
Russian Federation
lL is necessary Lo consider LhaL condiLions o renderin
assisLance Lo persons wiLh inLellecLual disabiliLy in various
reions [depends] on economic developmenL o Lhe reion
and Lhe deree o developmenL o iLs inrasLrucLure.
Tonga
As a [proessional] sLa [wiLh] persons wiLh disabiliLies, l
have been servin Lhese persons since 1977 and [.] Lhere
hasn'L been any help rom anywhere, and disabled persons
are [more numerous LhaL ever] buL [Lhere sLill is] very lim-
iLed supporL, and very liLLle undin rom anywhere.
Ukraine
1here is no cenLralized source which collecLs inormaLion
abouL Lhe number o persons wiLh inLellecLual disabiliLy who
use services or inLellecLual disabiliLy in Ukraine. 1he Ninis-
Lry o HealLh is responsible or inLellecLual disabiliLy and or
persons wiLh menLal disorders who address Lheir problems
Lo Lhe medical docLors. 1he NinisLry o Social Aairs is
responsible or [persons wiLh inLellecLual disabiliLy] in social
inLernaLs. 1he NinisLry o LducaLion is responsible or [per-
sons wiLh inLellecLual disabiliLy] in schools. YeL, even Lhe
sLaLisLics in each o Lhe NinisLries is noL available.
Upper middIe-income countries
Barbados
[ln 8arbados], alLhouh Lhere are some services or persons
wiLh inLellecLual disabiliLies, service users have ound Lhe
services Lo be sparse or sadly lackin. All parLies aree LhaL
Lhere is an urenL need or research and a need Lo collaLe
Lhe exisLin inormaLion. Fundin is also needed Lo supporL
boLh research as well as services or persons wiLh inLellecLual
diculLies.
69
ChiIe
ln Chile, alLhouh Lhere are iniLiaLives in diverse secLors wiLh
respecL Lo [inLellecLual disabiliLies], Lhese iniLiaLives are noL
coordinaLed by any insLiLuLion, eiLher in Lhe public or privaLe
secLors.
Lithuania
1here were diculLies in answerin some o Lhe quesLions,
mainly because Lhe Lopic o inLellecLual disabiliLies is ov-
erned by very dierenL aencies and secLors.
Nauritius
ln NauriLius, [.] Lhe local associaLions (NCCs) [.] are
responsible or inLellecLual disabiliLy and all services pro-
vided. [.] 1hey ive direcL pension Lo disabled persons
and ree public LransporL, or all Lypes o disabiliLies [.] buL
noLhin parLicular [or persons wiLh] inLellecLual disabiliLy.
NCCs are very acLive and lobby sLronly or Lhe rihLs, pro-
vision o services, developmenL o educaLion policies, and
implemenLaLion o resources.
PoIand
Persons wiLh inLellecLual disabiliLy in Poland are sLill very
marinalized. CovernmenLal policy is ocused on sereaLed
educaLion and provision o asylum Lype insLiLuLions. 1he
inLeraLion and inclusion movemenL is in iLs iniLial sLaes.
New ideas such as early inLervenLion, day-care cenLres,
occupaLional Lherapy workshops, vocaLional Lrainin, roup
homes, supporLed employmenL and shelLered employmenL,
and individual supporL or persons wiLh inLellecLual disabiliLy
and Lheir amilies are inLroduced by NCCs.
HIgh-Income countrIes
Canada
ln Canada, services Lo persons wiLh inLellecLual disabiliLies
are compleLed on a provincial level. 1he ederal overnmenL
makes healLh Lranser paymenLs Lo Lhe provinces in Lhe
yearly budeL, buL Lhese are adminisLered and prioriLized on
a provincial level. Hence, Lhere is no naLional ederal policy
or Lhe care o individuals wiLh inLellecLual disabiliLies in
Canada. [.] As such, Lhere are no seL curricula or proes-
sionals workin in Lhe area o inLellecLual disabiliLy across
Canada. lnsLead, we have "pockeLs" o inLeresLs wiLhin
universiLy seLLins LhaL oer courses in disciplines in Lhe
inLellecLual disabiliLy eld. [.] However, Lhese are noL man-
daLed by eiLher a provincial or ederal Lrainin mandaLes.
Creece
No specic epidemioloical daLa [are] available or persons
wiLh inLellecLual disabiliLies in Creece [.]. AL presenL, inor-
maLion derived rom clinical experience, relevanL sLudies o
persons wiLh disabiliLies, and indicaLive sLaLisLical daLa are
[all LhaL is] available.
lceIand
HealLh services are larely inexpensive Lo all lcelanders,
and or persons wiLh inLellecLual impairmenL such services
are almosL always ree o chare and provided in local and
naLional healLh services LhaL serve Lhe eneral public. Disa-
bled persons rank amon Lhe pooresL persons in lceland
[.]. Preschools or children rom 1-6 years are ree or
Lhose wiLh disabiliLies [.]. Cne o Lhe biesL problems or
adulLs wiLh inLellecLual impairmenL is Lhe lack o opporLuni-
Lies Lo join Lhe world o work. ShelLered workshops are noL
always available and poLenLial workers spend Lheir adulL lie
eiLher aL home (mosLly in roup homes) or in rehabiliLaLion
cenLres, rom which very ew raduaLe.
5witzerIand
SwiLzerland is a ederaLed sLaLe composed o 26 canLons,
each wiLh iLs own auLonomy. Hence, Lhere is a loL o diversi-
Ly in Lhe Lerminoloy employed, Lhe laws applied, Lhe Lypes
o services oered, as well as Lhe aLLribuLion o individual
and collecLive Lrainin in inLellecLual disabiliLies.
United Kingdom of Creat Britain
and Northern lreIand
AlmosL all proessional inpuL Lo persons wiLh learnin dis-
abiliLies (e.. docLors, nurses, social workers, LherapisLs, eLc.)
is unded by Lhe public secLor. [.] Similarly, employmenL or
day occupaLion services are publicly unded. HisLorically, Lhe
majoriLy were also publicly provided. However, Lhe Lrend is
Lowards employmenL supporL and provision o new orms
o day acLiviLies Lo be commissioned rom independenL sec-
Lor providers.
United 5tates of America
ln Lhe USA, Lhe services Lo persons wiLh inLellecLual and
oLher disabiliLies are manaed aL Lhe sLaLe level. 1hese serv-
ices vary reaLly in quanLiLy and qualiLy rom sLaLe Lo sLaLe.
1he naLional overnmenL plays a major parL in nancin
services provided Lo persons wiLh inLellecLual disabiliLies
(especially adulLs wiLh inLellecLual disabiliLies), buL iL has a
airly modesL role in speciyin Lhe naLure and qualiLy o Lhe
services acLually provided by Lhe sLaLes.
70
S AL I N1 f I NDI NGS
1his survey was desined Lo invesLiaLe resources and
services or inLellecLual disabiliLies in WHC Nember SLaLes,
AssociaLe Nembers o WHC, and areas and LerriLories.
Some ndins perLain Lo almosL all counLries; whereas oLh-
ers apply Lo specic subroups, accordin Lo Lheir reion or
level o income. We will now discuss Lhe mosL salienL nd-
ins rom a lobal perspecLive. However, since lack o inor-
maLion was our rsL ndin, some o Lhese resulLs should be
inLerpreLed wiLh cauLion. Nany experLs who reviewed Lhe
resulLs expressed concern LhaL some o Lhe ndins could
be misleadin, over-posiLive, and perhaps noL applicable Lo
people's everyday experiences. WiLh Lhis in mind, we have
ormulaLed Lhe salienL ndins in broad Lerms Lo emphasize
eneral Lrends. 1he Lables and ures can be used Lo acili-
LaLe comparison o similariLies and dierences beLween Lhe
six WHC reions and Lhe our income caLeories and Lhus
shed lihL on commonaliLies and dierences beLween coun-
Lries in resources and services or inLellecLual disabiliLies.
AvaIlabIlIty of InformatIon
RespondenLs rom 147 counLries collaboraLed Lo supple-
menL Lhe daLa. WiLh an overall response raLe o 74.6%,
coverin counLries wiLh 94.6% o Lhe world populaLion, Lhis
survey provides a unique source o inormaLion. UnorLu-
naLely, in Lhe absence o comprehensive ocial daLa, mosL
respondenLs had Lo answer survey quesLions on Lhe basis
o Lheir personal knowlede and experience. As such, one
ndin is Lhe pauciLy o documenLaLion abouL inLellecLual
disabiliLies, such as publicaLions or reerences in naLional
reporLs, epidemioloical daLa, or daLa on services provision
and delivery. 1he poor reliabiliLy o Lhe epidemioloical daLa
we collecLed seems, wiLh hindsihL, Lo reinorce Lhis ndin.
However, respondenLs rom more Lhan Lwo Lhirds o coun-
Lries reporLed LhaL some Lype o research had been done
in Lheir counLries, alLhouh very ew had a research cenLre
LhaL was specically dedicaLed Lo inLellecLual disabiliLies.
Use of termInology and systems of classIhcatIon
lnLellecLual disabiliLies were reerred Lo as illnesses, disabili-
Lies, or boLh, and no consensus abouL Lhese Lerms exisLed.
1he survey showed LhaL menLal reLardaLion is Lhe mosL
widely used Lerm, alLhouh many persons also reerred Lo
inLellecLual disabiliLies. Cne incenLive or implemenLaLion o
sLandard use o a Lerm LhaL reers Lo disabiliLy, raLher Lhan
Lo inLellecLual or menLal reLardaLion, is Lhe hL aainsL
sLimaLisaLion o persons wiLh inLellecLual disabiliLies and
Lheir amilies. AparL rom Lhis concern, a common Lerm o
reerence would aid parallel use o inLernaLional sysLems o
dianosis and classicaLion, such as lCD and DSN-lV.
VIsIbIlIty of the Issue
ldenLicaLion o a suiLable respondenL in each counLry Lo
whom a requesL or inormaLion abouL inLellecLual disabili-
Lies could be addressed was a lon and diculL process. We
noLed LhaL resources and services or inLellecLual disabiliLies
seemed Lo be embedded wiLhin oLher elds, and scaLLered
beLween secLors and auLhoriLies. ParLly or Lhis reason,
inormaLion specic Lo inLellecLual disabiliLies was diculL Lo
access in almosL all counLries. 8ecause persons wiLh inLellec-
Lual disabiliLies such as vision, hearin, or locomoLor impair-
menLs do noL have conspicuous disabiliLies, Lhey mihL also
be diculL Lo idenLiy as a LareL roup.
CLher indicaLors LhaL inLellecLual disabiliLies have low vis-
ibiliLy in some counLries, and low prioriLy on naLional poliLi-
cal, economic, and social aendas, included Lhe number o
counLries wiLhouL any specic naLional policy, proLecLion
law, overnmenL beneLs, or public undin or inLellecLual
disabiliLies. ln some circumsLances coverae o inLellecLual
disabiliLies in eneric policies, laws, or prorammes can
remain larely LheoreLical.
Sources of fundIng
1he ndins indicaLed LhaL undin or services oriinaLed
mainly rom public unds, ouL-o-pockeL expenses, and
NCC conLribuLions. 1he public secLor had Lhe reaLesL
responsibiliLy or nancin services or inLellecLual disabiliLies
LhrouhouL Lhe world; however, in low-income counLries,
especially in Arica, NCCs and inLernaLional oranizaLions
were more involved in delivery o services or inLellecLual
disabiliLies. ln counLries across Lhe our dierenL income
caLeories, respondenLs reporLed a hih proporLion o ouL-
o-pockeL paymenL or services. However, Lhis ndin mihL
be indicaLive o eneral access Lo any Lype o healLh and
welare services, in mosL o Lhe counLries o Lhe world.
ProvIsIon of servIces
DaLa abouL provision o services could have been aecLed
by Lhe discreLe ormaL used in Lhe quesLionnaire (wiLh only
"yes" and "no" opLions), since even a sinle occurrence
o a service could eliciL a "yes" response. 1he ndin LhaL
more Lhan 75% o counLries oered some orm o serv-
ices or inLellecLual disabiliLies could have been aecLed by
Lhis limiLaLion. 1he services available in more Lhan 75% o
counLries included healLh care (primary healLh care, inpa-
LienL healLh-care services, specialized services, and physical
rehabiliLaLion) and were Lailored Lo children, adolescenLs,
and adulLs. Nore Lhan 75% o counLries we surveyed also
oered services or children and adolescenLs wiLhin Lhe
educaLion secLor (wheLher mainsLream or special schools).
Nore Lhan 65% o counLries provided services LhaL were
specically relaLed Lo inLellecLual disabiliLies, such as screen-
in, assessmenL, or orienLaLion, early inLervenLion, individual
supporL, psycholoical and psychiaLric inLervenLions, psy-
chosocial rehabiliLaLion, and day cenLres. AbouL Lhe same
proporLion o counLries (60-65%) had proessional Lrainin,
work-skills Lrainin or developmenL, and shelLered or sup-
porLed employmenL or persons wiLh inLellecLual disabili-
5aIient ndings
71
S AL I N1 f I NDI NGS
Lies). CLher services LhaL were available in mosL counLries
(across all ae roups), included supporL or proLecLion o
rihLs and advocacy; leisure acLiviLies; LransporLaLion; so-
called assisLive Lechnoloy; and supply o ood. However,
by conLrasL, ewer Lhan hal Lhe counLries we surveyed
oered residenLial services (osLer homes, roup homes,
nursin homes, or supporL or independenL livin); liLeracy
prorammes; and adulL educaLion prorammes. Services or
inLellecLual disabiliLies LhaL involve asylums remained very
imporLanL: 56.5% o parLicipaLin counLries had Lhis Lype o
aciliLy or adulLs, and 49.2% or children and adolescenLs.
AvailabiliLy o dierenL Lypes o services or amilies varied
widely; or example, psycholoical counsellin was oered
Lo amilies in almosL 75% o counLries; educaLion on inLel-
lecLual disabiliLies in Lwo Lhirds; and supporL or Lhe deence
o rihLs and advocacy in almosL 60%. However, only a ew
counLries provided home aid and respiLe care (44% and
30%, respecLively).
Access to servIces
DespiLe Lhe ndin LhaL many counLries provided some level
o services, Lhe available services were noL necessarily su-
cienL Lo meeL need. Access - boLh Lo overnmenL beneLs
and Lo services - was criLical. ln 39% o counLries, ewer
Lhan 10% o persons wiLh inLellecLual disabiliLies received
overnmenL beneLs Lo which Lhey were leally enLiLled; in
38% o counLries more Lhan 75% did so. Socioeconomic
sLaLus and eoraphical locaLion were Lhe main barriers Lo
access Lo services; Lhey had a major eecL in more Lhan hal
o counLries surveyed.
PreventIon efforts
Some known causes o inLellecLual disabiliLies are prevenLa-
ble. Nore Lhan hal Lhe counLries LhaL parLicipaLed in Lhe sur-
vey, across all counLry-income caLeories and WHC reions,
had prorammes desined Lo prevenL inLellecLual disabiliLies.
lmplemenLaLion Lended Lo be proporLional Lo income. 1hese
sLraLeies LareLed all caLeories o risk acLors, rom envi-
ronmenLal acLors (e.. iodine supplemenLaLion) Lo behav-
ioural acLors (e.. maLernal alcohol consumpLion). However,
we did noL cover wide-specLrum iniLiaLives, such as maLernal
care, child care, and poverLy alleviaLion, LhaL are known Lo
aecL Lhe incidence o inLellecLual disabiliLies.
Human resources and traInIng
1he ve main roups o proessionals who provided services
or persons wiLh inLellecLual disabiliLies were special educa-
Lors, social workers, psychiaLrisLs, psycholoisLs, and Leach-
ers. 1hese proessionals were reporLed Lo beneL Lhe mosL
rom Lrainin prorammes in services or inLellecLual disabili-
Lies. ln-service Lrainin was Lhe mosL common orm o Lrain-
in, whereas raduaLe Lrainin was rare, and concenLraLed
in hih-income counLries.
AlLhouh primary care services were imporLanL Lo persons
wiLh inLellecLual disabiliLies, ew respondenLs menLioned
primary healLh care workers amon Lhe proessionals who
worked wiLh such persons, and ew counLries seemed Lo
oer Lrainin Lo Lhese workers. However, we noLe LhaL Lhe
quesLionnaire did noL menLion LradiLional healers or non-
proessionals in Lhe lisL o resources LhaL could oer supporL
Lo persons wiLh inLellecLual disabiliLies and Lheir amilies.
Role of NGOs and InternatIonal organIzatIons
NCCs were presenL in 88.2% o respondin counLries, and
inLernaLional oranizaLions in 62.2% o Lhem. AlLhouh boLh
NCCs and inLernaLional oranizaLions ocused Lheir acLivi-
Lies on advocacy and educaLion, inLernaLional oranizaLions
were also involved wiLh policy and sysLem developmenL and
human rihLs Lrainin, whereas NCCs concenLraLed on sup-
porL, sel-help, empowermenL, and rehabiliLaLion services.
1he roles o NCCs and inLernaLional oranizaLions Lended
Lo dier accordin Lo Lhe income levels o Lhe counLries
in which Lhey operaLed. ln hih-income counLries, NCCs
ocused on advocacy and developmenL o policies and sys-
Lems; whereas in oLher counLries Lhey devoLed more eorL
Lo educaLion, rehabiliLaLion, supporL, sel-help, empow-
ermenL, and provision o direcL services. ln low-income
counLries Lhe conLribuLion o NCCs Lo nancin services or
persons wiLh inLellecLual disabiliLies was hihesL.
Gaps In resources between countrIes
1he survey showed LhaL alLhouh counLries in all WHC
reions had some resources or persons wiLh inLellecLual
disabiliLies, Lhey were proporLional Lo income. 1he number,
Lype, and comprehensiveness o available resources also
increased accordin Lo income. Services available Lo adulLs
or children and adolescenLs wiLh inLellecLual disabiliLy in
hih-income counLries Lended Lo be communiLy-based,
and specic or exclusive Lo inLellecLual disabiliLies; whereas
low-income counLries showed unmeL needs across Lhe
whole rane o services. We also noLed inadequaLe research
capaciLies, especially in low-income and middle-income
counLries. Since research rom hih-income counLries can-
noL be applied direcLly Lo siLuaLions in oLher counLries, local
eorLs will be required Lo solve local problems Lhrouh
developmenL and disseminaLion o knowlede.
"Although more than 90% of chIldren and famIlIes
affected by developmental dIsabIlItIes are lIkely to
lIve In developIng countrIes, It appears that more than
90% of research, preventIve efforts and servIces relat-
ed to developmental dIsabIlItIes Is dIrected toward the
populatIons of the world's wealthIer countrIes.
(DurkIn, 2002)
72
1he ollowin pararaphs presenL implicaLions or urLher
acLions based boLh on Lhe ndins rom Lhe ALlas-lD survey
and on Lhe commenLs and criLicisms o Lhe experLs who
were consulLed.
Change prIorItIes of governments and cIvIl socIety
1he issue o inLellecLual disabiliLies has had a low posiLion
in many relaLed elds, such as menLal healLh, rehabiliLaLion,
public healLh, and primary care. ln some counLries, Lhe real-
iLy o inLellecLual disabiliLies has been almosL overshadowed
by oLher concerns. lndicaLors o Lhe prioriLy accorded Lo
inLellecLual disabiliLies include naLional policies on inLel-
lecLual disabiliLies, naLional proLecLion laws or persons
wiLh inLellecLual disabiliLies, overnmenL beneLs or such
persons and Lhe proporLion o persons who received such
beneLs, public undin or Lhe delivery o services, epide-
mioloical daLa, and naLional documenLaLion and reporL-
in o Lhis issue. NosL counLries we surveyed received low
scores or all o Lhese indicaLors. 1he absence o sLandard
Lerminoloy, or o a sysLem o classicaLion, seemed Lo con-
LribuLe Lo Lhis low posiLion. 1he inLersecLion o inLellecLual
disabiliLies wiLh aL leasL Lhree oLher elds (educaLion, psy-
chiaLry, and rehabiliLaLion) could exacerbaLe iLs low sLaLus.
Cne clear implicaLion is LhaL advocacy iniLiaLives should be
oranized and supporLed aL Lhe inLernaLional and naLional
levels Lo prioriLise inLellecLual disabiliLies on overnmenL
aendas and Lo increase civil-socieLy awareness o inLel-
lecLual disabiliLies. 1echnical assisLance Lo counLries is also
needed, Lo aciliLaLe ormulaLion o policies and laws, imple-
menLaLion and moniLorin o prorammes, daLabase devel-
opmenL, and research.
Resources should also be allocaLed Lo developmenL and pro-
moLion o Lools LhaL will supporL capaciLy buildin or relevanL
proessionals, non-proessionals, and communiLy members.
Clearly IdentIfy accountable authorItIes
ResponsibiliLies or inLellecLual disabiliLies were scaLLered
beLween many consLiLuencies, overnmenL deparLmenLs,
and aencies, wiLh Lhe consequence LhaL none o Lhese
auLhoriLies had overall accounLabiliLy aL Lhe naLional level.
We encounLered Lhis siLuaLion in many counLries when we
aLLempLed Lo idenLiy relevanL conLacLs; Lhose whom we
did survey also reporLed diculLy in obLainin inormaLion
Lo answer quesLions relaLed Lo policies and prorammes,
nancin, oranizaLion o services, and delivery.
Sharin o responsibiliLies beLween many consLiLuencies
and deparLmenLs could be rearded as a sLrenLh, since iL
ensures LhaL supporL will be provided Lo persons wiLh inLel-
lecLual disabiliLies and Lheir amilies by Lhe mosL appropri-
aLe overnmenL enLiLy, and LhaL Lhese persons will have
access Lo prorammes desined or Lhe eneral populaLion.
However, poLenLial or beneL rom shared accounLabiliLy
depends on aL leasL Lhree condiLions. FirsL, each counLry
musL develop a naLional acLion plan or inLellecLual dis-
abiliLies, which can be implemenLed Lo supporL consulLaLion
beLween dierenL sLakeholders in Lhe eld and coordinaLion
o acLions by dierenL enLiLies. Second, exisLin policies, and
especially Lhose relaLed Lo disabiliLy, will need Lo be ramed
Lo clearly include inLellecLual disabiliLies, so LhaL inLellecLual
disabiliLies ain pariLy wiLh oLher disabiliLies. 1hird, Lhese
policies and acLion plans musL be enorced aL Lhe naLional
and local levels Lhrouh accounLabiliLy mechanisms.
Close gap between needs and hnancIal resources
Survey respondenLs emphasized Lhe pauciLy o nancial
resources in Lheir counLries Lo meeL Lhe needs o persons
wiLh inLellecLual disabiliLies and Lheir amilies. 1his siLuaLion
was worsened by Lhe low prioriLy o Lhis issue and iLs low
visibiliLy. ln many counLries, especially in Arica and low-
income counLries, inLernaLional oranizaLions and NCCs
have a crucial and unique role in supporL or persons wiLh
inLellecLual disabiliLies and Lheir amilies.
Any plannin eorL eared Lo scale up resources musL rec-
onize and mobilize all exisLin resources in Lhe communiLy,
wheLher rom public, privaLe, or Lhird secLor sources, and
develop shoe-sLrin sLraLeies Lo maximize Lhe eciency o
Lheir use, wiLhouL duplicaLion o services. When new nancial
resources are available or services developmenL, Lhey should
be allocaLed in a way LhaL prioriLizes eciency and coverae.
RecognIze the role of famIlIes
RespondenLs reporLed LhaL amilies were crucial Lo supporL
or persons wiLh inLellecLual disabiliLies, wheLher Lhey were
adulLs, children, or adolescenLs. For more Lhan hal Lhe
counLries amily supporL was Lhe only orm o supporL avail-
able. Care o children wiLh inLellecLual disabiliLies by produc-
Live adulLs represenLs a subsLanLial burden Lo socieLy.
1he cosL o Lhis burden musL be Laken inLo accounL when
draLin plans, developmenL sLraLeies, and iniLiaLives or
persons wiLh inLellecLual disabiliLies. CovernmenLs musL
coordinaLe naLional supporL plans or amilies wiLh children
wiLh inLellecLual disabiliLies LhaL oer some orm o respiLe
care and home-aid, and Lhus allow Lhese individuals Lo
remain as producLive members o socieLy.
The way forward
4 1 H WAY f OR WAR D
73
1 H WAY f OR WAR D
DIstrIbute resources between and
wIthIn countrIes
1hese ndins showed LhaL resources and services or inLel-
lecLual disabiliLies varied in dierenL conLexLs and beLween
counLries accordin Lo dierences in income levels and
reions. 1he daLa also showed LhaL eoraphical locaLions
and socioeconomic acLors hindered access Lo services in
more Lhan hal Lhe counLries in Lhe world.
Access musL be considered in every plan or developmenL
sLraLey. AcLion plans musL Lake inLo accounL dierences in
nancial and human resources and acknowlede Lhe social
and culLural conLexLs. DevelopmenL o services based on a
biomedical approach has Lended Lo resulL in aciliLies LhaL are
clusLered in urban areas, near Lo healLh ocials. 1hese serv-
ices, when available, were reporLed Lo be expensive and inLe-
raLed wiLh oLher healLh services LhaL did noL necessarily alin
wiLh Lhe needs and preoccupaLions o persons wiLh inLel-
lecLual disabiliLies and Lheir amilies. Lvery acLion plan musL
be exible enouh Lo adjusL Lo naLional circumsLances, since
more Lhan one model or provision o services exisLs. 1he cur-
renL consensus is LhaL services should be planned on Lhe basis
o promisin approaches such as Lhe lie-cycle model, Lhe
supporL model, and communiLy-based rehabiliLaLion.
Address custodIal care InstItutIons
1he ndins indicaLed LhaL asylum-Lype insLiLuLions were
sLill imporLanL in many counLries, in an era o downsizin
or closin down such insLiLuLions in avour o communiLy-
based resources.
FuLure plans, developmenL sLraLeies, and iniLiaLives or
persons wiLh inLellecLual disabiliLies musL involve downsizin
o asylum-Lype aciliLies and esLablishmenL o services LhaL
are communiLy-based and inLeraLed inLo Lhe naLional neL-
works o services. However, Lhis process musL incorporaLe
soluLions Lo specic challenes associaLed wiLh persons who
have lived in such insLiLuLions, such as severely limiLed basic
skills, co-occurrence o psychiaLric disorders and challenin
behaviours, and lack o social supporL.
uIld capacIty
CapaciLy buildin or inLellecLual disabiliLies musL be priori-
Lized wiLhin primary care, since respondenLs reporLed LhaL,
primary care was an imporLanL resource or Lhese persons
in mosL counLries. However, a lare ap exisLs beLween Lhe
imporLance o Lhese services or persons wiLh inLellecLual
disabiliLies and Lheir amilies and Lrainin opporLuniLies or
primary-care workers.
1he capaciLy o primary care workers Lo deliver services or
persons wiLh inLellecLual disabiliLies musL be improved via
on-siLe Lrainin prorammes or oLher didacLic approaches.
Proessionals should be Lrained Lo supporL amilies, inormal
careivers, and communiLy leaders, and Lo provide consul-
LaLions Lo primary healLh care workers. DisLance-educaLion
prorammes LhaL have been developed in boLh hih-income
and low-income counLries oer inLeresLin opporLuniLies or
such Lrainin. Such iniLiaLives should aim Lo enhance com-
muniLy capaciLy and social capiLal so LhaL more naLural solu-
Lions can be provided wiLhin communiLies, in conjuncLion
wiLh overnmenL supporLs.
Make Intellectual dIsabIlItIes a publIc health Issue
Public healLh aencies need Lo include persons wiLh inLel-
lecLual disabiliLies as parL o Lheir concerns. Nany counLries
have LareLed specic risk acLors associaLed wiLh inLellecLual
disabiliLies, and implemenLed prevenLive sLraLeies. Such
sLraLeies can be developed aL every lie-sLae and can LareL
environmenLal acLors, prenaLal and posLnaLal circumsLances,
early childhood, and behaviours in adolescence and adulL ae.
Proress in Lhe implemenLaLion o some o Lhese sLraLeies has
been recorded over Lhe pasL 10 years (Durkin, 2002).
Specic acLions can alleviaLe some causes o inLellecLual dis-
abiliLies. Public healLh prorammes LhaL LareL environmenLal
acLors (e.. iodine, mercury, and lead), livin condiLions (pov-
erLy), behaviours (Lobacco, alcohol, and dru abuse), provi-
sion o services (moLher and child care and vaccinaLion) could
reduce Lhe incidence o inLellecLual disabiliLies. PerinaLal healLh
care needs Lo be emphasized, since iL is Lhe mosL imporLanL
cause o inLellecLual disabiliLies in low-income counLries.
Ceneral pracLiLioners (physicians), primary-healLh workers,
midwives, and skilled birLh aLLendanLs should eL Lrainin and
uidance in prevenLion and idenLicaLion o inLellecLual dis-
abiliLies, and in early inLervenLion or such disabiliLies.
nforce human rIghts and rIght to health
LxisLin sLaLe-based resources or inLellecLual disabiliLies
derive rom LreaLy-based rihLs. Such rihLs are seL ouL in
bindin inLernaLional insLrumenLs, such as Lhe lnLernaLional
CovenanL on Lconomic, Social and CulLural RihLs (CHCHR,
2000), Lhe lnLernaLional CovenanL on Civil and PoliLical
RihLs (UNCHR, 1994), and Lhe ConvenLion on Lhe RihLs o
Persons wiLh DisabiliLies (UNCA, 2007); non-bindin insLru-
menLs, such as Lhe Universal DeclaraLion on Human RihLs
(UNCA, 1948), Lhe SLandard Rules on Lhe LqualizaLion o
CpporLuniLies or Persons wiLh DisabiliLies (UNCA, 1993),
and lCLSCR Ceneral CommenLs 5 and 14 (CHCHR, 2000);
and civil-socieLy insLrumenLs, such as Lhe Caracas Declara-
Lion (PAHC & WHC, 1990) and Lhe NonLreal DeclaraLion
on lnLellecLual DisabiliLies (PAHC & WHC, 2004). Cne chal-
lene will be Lo ensure LhaL recenL aLLenLion on human rihLs
issues can be LranslaLed inLo policies, prorammes, and
acLions LhaL will improve underlyin condiLions necessary or
healLh and especially or inLellecLual disabiliLies.
74
1 H WAY f OR WAR D
lssues relaLed Lo inLellecLual disabiliLies need Lo be incor-
poraLed inLo a rihL-based approach Lo disabiliLy resources
and services. CovernmenLs should Lhereore uaranLee Lhe
presence, availabiliLy, access Lo, and enjoymenL o adequaLe
healLh and social services based on Lhe needs o persons
wiLh inLellecLual disabiliLies and Lheir ree and inormed
consenL, in line wiLh arLicle 25 o Lhe UN ConvenLion on Lhe
RihLs o Persons wiLh DisabiliLies (UNCA, 2007). Accord-
inly, persons wiLh inLellecLual disabiliLy should always be
acLively involved in a rihLs-based approach, whose ouL-
comes should promoLe Lhe oranizaLion o communiLy-based
services LhaL uaranLee Lhe enorcemenL o Lhese rihLs.
TabIe 59 1he way forward: a summary of Issues and actIons
Issues ActIons
Intellectual dIsabIlItIes (ID) are a low prIorIty for both
governments and cIvIl socIety
Advocacy
1echnical assisLance or developmenL o policies and
prorammes, plannin, and operaLional research
Lack of well IdentIhed accountable authorItIes
NaLional acLion plans
Revision o exisLin laws Lo encompass lD
AccounLabiliLy mechanisms or implemenLaLion
Gap between needs and fundIng for ID
ReconiLion and mobilizaLion o exisLin resources
CosL eecLive sLraLeies or ecienL use o resources wiLh
poLenLial or lare coverae
CrItIcal role of famIlIes
lnclusion o amilies in any policy, plan, or iniLiaLive
DevelopmenL o respiLe and home-aid
DIscrepancIes In access to servIces between countrIes
and wIthIn each country
FlexibiliLy and adapLabiliLy Lo local circumsLances in acLion
plans
DiversicaLion o approaches wiLh more emphasis on Lhe
lie-cycle, supporL model, and communiLy-based rehabili-
LaLion approaches
PersIstence of asylum-type InstItutIons
Downsizin o Lhese aciliLies in avour o communiLy-
based care
Importance of prImary care servIces to persons wIth ID,
and need for capacIty buIldIng, maInly at the prImary
care level
8uild capaciLy in primary care by diusion and adapLaLion
o exisLin educaLional resources
Develop approaches such as consulLaLion-liaison and
supervision aL disLance
Intellectual dIsabIlItIes as a publIc health Issue
Presence in public healLh sLraLeies and campains LhaL
LareL risk acLors
Special emphasis on perinaLal care
nforcement of human rIghts and rIght to health
for persons wIth ID
AdopLion o a rihL-based approach Lo disabiliLy
75
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Durkin N. 1he epidemioloy o developmenLal disabiliLies in low-
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References
R f R NC S
76
77
List of participating Nembers 5tates of WHO, Associate Nembers of WHO,
and areas or territories
MMR S1A1S Of WHO AND
ASSOCIA1 MMRS Of WHO, ARAS
OR 1RRI1ORIS
WHO RGION WORLD ANk INCOM CA1GORY
AfghanIstan LasLern NediLerranean Low
AlbanIa Lurope Lower middle
AlgerIa Arica Lower middle
Angola Arica Lower middle
ArgentIna Americas Upper middle
ArmenIa Lurope Lower middle
AustralIa WesLern Pacic Hih
AustrIa Lurope Hih
angladesh SouLh-LasL Asia Low
arbados Americas Upper middle
elarus Lurope Lower middle
elgIum Lurope Hih
elIze Americas Upper middle
enIn Arica Low
olIvIa Americas Lower middle
osnIa and HerzegovIna Lurope Lower middle
otswana Arica Upper middle
razIl Americas Lower middle
runeI Darussalam WesLern Pacic Hih
ulgarIa Lurope Lower middle
urundI Arica Low
CambodIa WesLern Pacic Low
Cameroon Arica Low
Canada Americas Hih
Chad Arica Low
ChIle Americas Upper middle
ChIna WesLern Pacic Lower middle
ChIna - Hong kong SpecIal
AdmInIstratIve RegIon (1)
WesLern Pacic Hih
ColombIa Americas Lower middle
Comoros Arica Low
RepublIc of the Congo Arica Low
Appendix 1
1 AP P NDI X
78
OR 1RRI1ORIS
Cook Islands WesLern Pacic Lower middle
Costa RIca Americas Upper middle
Cte d'IvoIre Arica Low
CroatIa Lurope Upper middle
Cuba Americas Lower middle
Cyprus Lurope Hih
Czech RepublIc Lurope Upper middle
DemocratIc RepublIc of the Congo Arica Low
Denmark Lurope Hih
DomInIcan RepublIc Americas Lower middle
gypt LasLern NediLerranean Lower middle
l Salvador Americas Lower middle
stonIa Lurope Upper middle
thIopIa Arica Low
fInland Lurope Hih
france Lurope Hih
Gabon Arica Upper middle
GambIa Arica Low
GeorgIa Lurope Lower middle
Germany Lurope Hih
Ghana Arica Low
Greece Lurope Hih
Guatemala Americas Lower middle
GuInea Arica Low
Honduras Americas Lower middle
Hungary Lurope Upper middle
Iceland Lurope Hih
IndIa SouLh-LasL Asia Low
IndonesIa SouLh-LasL Asia Lower middle
Iran (IslamIc RepublIc of) LasLern NediLerranean Lower middle
Iraq LasLern NediLerranean Lower middle
Ireland Lurope Hih
Israel Lurope Hih
Italy Lurope Hih
JamaIca Americas Lower middle
AP P NDI X 1
79
1 AP P NDI X
OR 1RRI1ORIS
Japan WesLern Pacic Hih
kazakhstan Lurope Lower middle
kenya Arica Low
kyrgyzstan Lurope Low
Lao People's DemocratIc RepublIc WesLern Pacic Low
LatvIa Lurope Upper middle
Lebanon LasLern NediLerranean Upper middle
Lesotho Arica Low
LIthuanIa Lurope Upper middle
Luxembourg Lurope Hih
Madagascar Arica Low
MalawI Arica Low
MalaysIa WesLern Pacic Upper middle
MalI Arica Low
Malta Lurope Hih
MaurItanIa Arica Low
MaurItIus Arica Upper middle
MexIco Americas Upper middle
MongolIa WesLern Pacic Low
Montenegro Lurope Lower middle
MozambIque Arica Low
Myanmar WesLern Pacic Low
NamIbIa Arica Lower middle
Netherlands Lurope Hih
New CaledonIa (1) WesLern Pacic Hih
New Zealand WesLern Pacic Hih
NIcaragua Americas Low
NIger Arica Low
NIgerIa Arica Low
Norway Lurope Hih
PakIstan LasLern NediLerranean Low
Palau WesLern Pacic Upper middle
Panama Americas Upper middle
Papua New GuInea WesLern Pacic Low
Paraguay Americas Lower middle
80
OR 1RRI1ORIS
Peru Americas Lower middle
PhIlIppInes WesLern Pacic Lower middle
Poland Lurope Upper middle
Portugal Lurope Hih
Qatar LasLern NediLerranean Hih
RepublIc of korea WesLern Pacic Hih
RepublIc of Moldova Lurope Low
RomanIa Lurope Lower middle
RussIan federatIon Lurope Upper middle
Rwanda Arica Low
SaInt LucIa Americas Upper middle
Samoa WesLern Pacic Lower middle
SaudI ArabIa LasLern NediLerranean Hih
Senegal Arica Low
SerbIa Lurope Lower middle
SIerra Leone Arica Low
SIngapore WesLern Pacic Hih
SlovakIa Lurope Upper middle
SlovenIa Lurope Hih
South AfrIca Arica Upper middle
SpaIn
Lurope Hih
SrI Lanka
SouLh-LasL Asia Lower middle
SurIname
Americas Lower middle
Sweden
Lurope Hih
SwItzerland
Lurope Hih
SyrIan Arab RepublIc
LasLern NediLerranean Lower middle
1haIland
SouLh-LasL Asia Lower middle
1he former Yugoslav RepublIc of
MacedonIa
Lurope Lower middle
1okelau (2)
WesLern Pacic Lower middle
1onga
WesLern Pacic Lower middle
1rInIdad and 1obago
Americas Upper middle
1unIsIa
1urkey
Lurope Upper middle
Uganda
Arica Low
1 AP P NDI X
81
1 AP P NDI X
OR 1RRI1ORIS
UkraIne
Lurope Lower middle
UnIted Arab mIrates
LasLern NediLerranean Hih
UnIted kIngdom of Great rItaIn
and Northern Ireland
Lurope Hih
UnIted RepublIc of 1anzanIa
Americas Low
UnIted States of AmerIca
Americas Hih
Uruguay
Americas Upper middle
UzbekIstan
Lurope Low
VIet Nam
WesLern Pacic Low
West ank and Gaza StrIp (1)
Yemen
LasLern NediLerranean Low
ZambIa
Arica Low
ZImbabwe
Arica Low
COUN1RY INCOM CA1GORIS GNI PR CAPI1A IN US$ (A1LAS M1HODOLOGY) 2003
Low Income <= 765
Lower mIddle Income 766-3,035
Upper mIddle Income 3,036-9,385
HIgh Income > 9,386
1 Areas or LerriLories LhaL are noL Nember SLaLes o WHC.
2 AssociaLe Nember o WHC.
82
MMR S1A1S Of WHO,
ASSOCIA1 MMRS
Of WHO, ARAS OR
1RRI1ORIS
NANL CF 1HL RLSPCNDLN1(S) CRCANlZA1lCN, ASSCClA1lCN, CR NCC
AfghanIstan Haji Cmara Khan Nuneeb Ahan Disabled Union (ADU)
Ruhullah Nassery NinisLry o HealLh
AlbanIa VikLor Lami AssociaLion lnLernaLionale de Recherche scienLique en
aveur des personnes Handicapes NenLales (AlRHN)
AlgerIa Aicha 8erriche Handicap inLernaLional - Nission Alrie
Aida Hakimi Csmanbovic
Angola Silva Lopes LLiambulo AosLinho Associacao Nacional dos DecienLes de Anola (ANDA)
ArmenIa KhachaLur Casparyan AssociaLion o Child PsychiaLrisLs and PsycholoisLs
(ACPP)
Naruke Yehiyan
Armen Sohoyan N. HeraLsi SLaLe Nedical UniversiLy
ArgentIna Hilda N. De AuberL FederaLion ArenLina de LnLidades pro ALenci_n a las
Personas con Discapacidad lnLelecLual y a sus Familias
(FLNDlN)
AustralIa 1im 8eard AusLralian lnsLiLuLe o HealLh and Welare
Xinyan Wen
Susan Hayes UniversiLy o Sydney
Lisa NiLchell CommuniLy Services and lndienous Aairs
AustrIa LrnsL 8erer Neuroloisches ZenLrum Rosenhueel
angladesh Anika Rahman Lipy CenLre or DisabiliLy and DevelopmenL (CDD)
arbados 8oneLa Phillips 8arbados Council or Lhe Disabled
Coldwin Wdwards Children's DevelopmenL CenLre
elarus Pavel Rynkov NinisLry o HealLh
elgIum Pol CeriLs NinisLere des Aaires sociales de la SanL publique eL de
l'LnvironnemenL
elIze PeLer A. AuusL 8elizean Assembly o & or Persons wiLh DisabiliLies
(8APD)
Nichael PiLLs
enIn Lmilie Fiossi-Kpadonou UniversiL d'Abomey Calavi
olIvIa Conzalo Rivero Chavez CenLro de RehabiliLacin Fislca y Lducacin Lspecial
(CLRLFL)
Ricardo Quiroa
Rodolo Lpez HarLman NinisLry o HealLh
osnIa and HerzegovIna Joka Simic 8laovcanin NinisLry o HealLh and Social ProLecLion
otswana Virinia S. Chakalisa NinisLry o HealLh
8uzwani Nada
razIl Francisco 8. Assumpo lnsLiLuLo de Psicoloia da Universidade de So Paulo
Flavia CinLra lnsLiLuLo Paradima
RenaLo LaurenLi
Naira Rodriues
Romeu Kazumi Sassak
Heloisa 8runow VenLura Di Nubila WHC CollaboraLin CenLre or Lhe Family o
lnLernaLional ClassicaLions in PorLuuese
AnLonio Carlos SesLaro Federao 8rasileira das Associaes de Sindrome de Down
List of respondents
Appendix 2
2 AP P NDI X
83
2 AP P NDI X
MMR S1A1S Of WHO,
ASSOCIA1 MMRS
Of WHO, ARAS OR
1RRI1ORIS
runeI Darrusalam Aban 8enneL 1aha Raja lsLeri Peniran Anak Saleha (RlPAS) HospiLal
ulgarIa Nadezhda Harizanova NinisLry o Labour and Social Policy
Slavka Nikolova Kukova 8ularian AssociaLion or Persons wiLh lnLellecLual
DisabiliLies (8APlD)
urundI Polycarpe Nduwayo NinisLere de la SanL Publique
CambodIa Sody An NinisLry o HealLh
Cameroon 8akan 8iLep 8iLep Andre Aide eL AssisLance aux lnvalides eL Handicaps
Dieudonn 8inomo Nenela Fonds des lnvalides du Cameroun
Canada NaLhalie Carcin Niriam Home and Services & l'lnLrale; Queen's
UniversiLy; UniversiL du Qubec a NonLral (UQAN)
Chad Hassan 1erab NinisLere de l'acLion sociale eL de la amille
Saklah Djimadounar RinserLion des personnes handicapes
ChIle AlberLo NinoleLLi NinisLerio de Salud
Andrea PobleLe
ChIna Ninjie Wan Nanjin 8rain HospiLal
ChIna - Hong kong SpecIal
AdmInIstratIve RegIon (1)
Henry Wai Nin Kwok Kwai Chun HospiLal
ColombIa Niuel Saboal Carcia La Asociacin Colombiana Para la Salud NenLal
Jos Posada Fundacin Saldarriaa Concha y LxperLo en Salud
NenLal en Colombia
Naria Vilma ResLrepo Universidad de AnLioquia
Jenny Carcia Valencia
Comoros Said Hassan SiLLi Hadidja NinisLere de la SanL, de la CondiLion Fminine eL des
Aaires Sociales
RepublIc of the Congo CilberL 8oumba L'Lcole spciale de 8razzaville eL son AssociaLion "Nille
soucis, 2000 Sourires"
Alain Naxime Nouana CenLre HospiLalier eL UniversiLaire de 8razzaville
Cook Islands 1earoa lorani NinisLry o HealLh
Daniel Roro
Donna SmiLh
Costa RIca Carmen Nacanche 8alLodano NinisLerio de Salud
Jos AlberLo 8lanco Nendoza Consejo Nacional de RehabiliLacin y Lducacin Lspecial
Cte d'IvoIre NarueriLe 1e 8onle Diawar lnsLiLuL naLional de SanL publique
CroatIa Sandra Cirkinaic AssociaLion or PromoLin lnclusion
Cuba 1aLiana ChkouL NinisLerio de 1rabaho y Seuridad Social
Yusimi Campos Suarez
Nario Pichardo Diaz Cranizacin Panamericana de la Salud - Cuba
Narcia Cobaz Ruiz NinisLerio de Salud Publica
Cyprus Lvanelos AnasLassiou ALhalassa HospiLal
Narina PayiaLsov CommiLLee or Lhe ProLecLion o Lhe RihLs o Persons
wiLh a NenLal Handicap (CPRPNH)
SLella Playbell
Czech RepublIc JiLka 8arLonova Praue PsychiaLric CenLre
Lva Draomirecka
84
MMR S1A1S Of WHO,
ASSOCIA1 MMRS
Of WHO, ARAS OR
1RRI1ORIS
DemocratIc RepublIc of the
Congo
Nza'kay Lende Kipupila AssociaLion d'LnLraide Ndico-Sociale (ALNS-AS8L)
Denmark Noens WiederholL CenLer or Liebehandlin a Handicappede
DomInIcan RepublIc Jos Nieses NinisLry o HealLh
Franklin J.Cmez NonLero SecreLaria de LsLado de Salud Publica y AsisLencia Social
lvonne SoLo
Lscarle Pea Consejo Nacional de Discapacidad (CCNADlS)
gypt Nasser Loza NinisLry o HealLh & PopulaLion
l Salvador Lva NaLeu de Nayora NinisLerio de Salud
stonIa Ane Raudmees LsLonian NenLally Disabled Persons SupporL
CranizaLion (LVPl1)
thIopIa ALo Asa Asheno Aao NinisLry o Labor and Social Aairs
Nesn Araya Addis Ababa UniversiLy
fInland Sari Kauppinen S1AKLS NaLional Research and DevelopmenL Aency or
Welare and HealLh
KrisLian Wahlbeck
france NarLine 8arres DirecLion nrale de l'acLion sociale
LaurenL CocqueberL Union NaLionale des AssociaLions de ParenLs eL Amis de
Personnes Handicapes NenLales (UNAPLl)
Julie Laubard
Gabon Frdric Nbunu Nabiala CenLre NaLional de SanL NenLale
GambIa Nusa N. Jane Cambia FuLure Hands on Disabled Persons
Assan Sinyan DeparLmenL o Social Welare
GeorgIa Nanana Sharashidze Ceorian AssociaLion or NenLal HealLh
Germany Cerhard Heendrer 8undesminisLerium r CesundheiL und Soziale
Sicherun
1homas SLracke
Johannes Schaedler ZenLrum r Planun und LvaluaLion Sozialer DiensLe;
UniversiLy o Sieen
Ghana Salome Franois New Horizon School AssociaLion
Greece H. Assimopoulos ALhens UniversiLy Nedical School
S. Diareme
C. KolaiLis
L. Soumaki
John 1sianLis
D. Ciannak Cpoulou AssociaLion or Lhe Psychosocial HealLh o Children and
AdolescenLs (APHCA)
Guatemala Juan Fernando Cuzman Coronado NinisLerio de Salud Pblica y AsisLencia Social
Llena Alejandra CrLiz Flores
Naria Alejandra Flores
Nario Cudiel Lemus
Ldna C. Palomo
Carlos Layle Romero
2 AP P NDI X
85
2 AP P NDI X
MMR S1A1S Of WHO,
ASSOCIA1 MMRS
Of WHO, ARAS OR
1RRI1ORIS
GuInea Nariama 8arry FederaLion uineenne pour la promoLion des
associaLions de eL pour personnes handicapes
(FLCUlPAH)
Nohamed Camara
Aboubacar Kamballah Koulibaly NinisLere des Aaires Sociales, PromoLion Feminine eL
de l'Lnance
Honduras Cladys L. Conzalez lnsLiLuLo Juana Leclerc
Lsmeralda Noncada
Yolany NonLes
Naribel Chacn de Reinoso
Hungary lsLvan 8iLLer Semmelweis UniversiLy
Zsuzsa CsaLo FederaLion o NCCs o persons wiLh Chronic lllnesses
Iceland Dra S. 8jarnason lceland UniversiLy o LducaLion
IndIa Nanju NehLa All lndia lnsLiLuLe o Nedical Sciences
Suman Sinha WHC Cce lndia
IndonesIa NaLalinrum Sukmarini LxLernal consulLanL Lo Lhe WHC lndonesia Cce
Iran (IslamIc RepublIc of) Sayyed Ali Samadi Valiasr RehabiliLaLion FoundaLion or NenLally ReLarded
Children
Iraq Salih Al Hasnawi NaLional NenLal HealLh Council
Ireland Suzanne Quinn UniversiLy Collee Dublin
PaLricia Noonan Walsh
Israel Joav Nerrick NinisLry o Social Aairs
Italy 1eresa di Fiandra NinisLry o HealLh
Ciampalo La Nala lLalian SocieLy or NenLal reLardaLion (SlRN),/UniversiLy
o Florence
JamaIca Crace Duncan Jamaican AssociaLion on NenLal ReLardaLion
Japan Keiko Sodeyama Japan Leaue on lnLellecLual DisabiliLes
kazakhstan Aiul 1asLanova NinisLry o HealLh
kenya David Nusau Kiima NinisLry o HealLh
kyrgyzstan Janyl Alymkulova NinisLry o HealLh
Sabira Nusabayev
Abjalal 8emaLov Republican CenLer or NenLal HealLh (RCNH)
1amilla Kadyrova Kyryz SLaLe Nedical Academy (CCNA)
Lao People's DemocratIc
RepublIc
ChanLharavady Choulamany NahosoL HospiLal
Sichanh SiLLhiphonh Handicap lnLernaLional
LatvIa Naris 1aube SLaLe NenLal HealLh Aency
Lebanon Radwan Saleh Abdullah PalesLinian Social YouLh AssociaLion
Samia Chazzaoui NinisLry o HealLh
Nohamed Ali Kanaan
RiLa Saba NinisLere des aaires sociales
Caby Saliba lnsLiLuL des Sciences Sociales
Lesotho K. NoLsamai LesoLho SocieLy o NenLally Handicapped Persons,
ParenLs & Families (LSNHP)
86
MMR S1A1S Of WHO,
ASSOCIA1 MMRS
Of WHO, ARAS OR
1RRI1ORIS
LIthuanIa Cna Davidoniene SLaLe NenLal HealLh CenLre
Lina NalisauskaiLe LiLhuanian welare socieLy or persons wiLh menLal
disabiliLy (VilLis)
Dainius Puras Vilnius UniversiLy
Luxembourg Carole Warnier NinisLere de la Famille eL de l'lnLraLion
Madagascar Sonia Andrianabela NinisLere de la SanL eL du Plannin Familial
MalaysIa NeLLilda John DiniLy and Services (D&S)
Aminah 8ee Nohd Kassim NinisLry o HealLh
Nanama A/P Nuruesu SocieLy or Lhe Severely NenLally Handicapped
Won Nam San Disabled Personss' lnLernaLional (DPl) Asia-Pacic
Reion
MalawI lmmaculaLe Chamanwana Zomba NenLal HealLh HospiLal
MalI Souleymane Coulibaly HpiLal du poinL C 8amako
Malta Jean Karl Soler NalLa Collee o Family DocLors
MaurItanIa Houssein Dia CenLre Neuro-PsychiaLrique
MaurItIus lrene Alessandri AssociaLion de ParenLs d'LnanLs lnadapLs de l'lle
Naurice (APLlN)
Azize 8ankur NinisLry o Social SecuriLy
MexIco Lauro Suarez Alcocer NinisLerio de la Salud
Virinia Conzalez 1orres
Naria Llena Narquez Caraveo HospiLal PsiquiaLrico Juan N. Navarro
MongolIa Ayushjav 8ayankhuu NenLal HealLh and Narcoloy CenLer
1seLsedary Combodorj NinisLry o HealLh
Montenegro Zorica CLasevic 8arac Clinical CenLre o NonLenero Klinika za menLalno
zdravlje
MozambIque Lidia Couveia NinisLrio da Saude
VicLor lreja Associao Lsperana Para 1odos
Myanmar Hla HLay NinisLry o HealLh
NamIbIa A. 8arandona NinisLry o HealLh and Social Service
Netherlands Will 8unLinx UniversiLy o NaasLrichL
New CaledonIa (1) Sylvie 8arny DirecLion des Aaires SaniLaires eL Sociales de Nouvelle-
Caldonie (DASS)
ChanLal DonneL
PaLrick Devivies
Alain Crabias
Narie-Claire 1ramoni
New Zealand Rob Cill NinisLry o HealLh
NIcaragua Cerardo Nejla 8alLodano Asociacin Nicarauense para la lnLeracin
ComuniLaria (ASNlC) / HospiLal "Nanuel de Jesus
Rivera"
HcLor Collado NinisLerio de Salud
Carlos FleLes Conzalez
Wilber 1orrez Norales Cranizacin de Revolucionarios DiscapaciLados (CRD)
NIger Dioo 8eido FdraLion Nierienne des Personnes Handicapes
(FNPH)
2 AP P NDI X
87
2 AP P NDI X
MMR S1A1S Of WHO,
ASSOCIA1 MMRS
Of WHO, ARAS OR
1RRI1ORIS
NIgerIa 8ukola RuLh Akinbola UniversiLy o lbadan
SLella Kanu
Clayinka Cmibodun UniversiLy Collee HospiLal
Norway Freja UlvesLad Karki DirecLoraLe or HealLh and Social Aairs
PakIstan Chulam Nabi Nizamani All Sanhar Handicapped AssociaLion (ASHA)
Khalid Saeed WHC Cce PakisLan
Palau Annabel Lyman NinisLry o HealLh
Panama Llena CasLro Ccina Nacional de Salud lnLeral para la Poblacin con
Discapacidad (CNSlP - NlNSA)
Laura de Dlaz lnsLiLuLo Nacional de Salud NenLal de Panama
Lira Conzalez
Juana del C. Herrera
AnLonio De Len
CarmiLa de Lima
8eLhania 8. de Lin
LisbeLh Norales
Llmer L. Rodrluez
lLzel Fernandez lnsLiLuLo Nacional de HabiliLacin Lspecial
Lneida Ferrer F SecreLaria Nacional para la lnLeracin Social de las
Personas con Discapacidad (SLNADlS)
Luis A. Daniel H. Federacin Nacional de Padres y Amios de Personas
con Discapacidad (FLNAPADLDl-RLPA)
Fanla de Roach Salud NenLal NinisLerio
Ana Lorena Rul NinisLerio de Vivienda
Papua New GuInea Craeme Leach Callan Services or persons wiLh a disabiliLy in Papua
New Cuinea
Paraguay RuLh lrala de Kurz NinisLerio de Salud Publica y 8ienesLar Social
Javier Lsplndola NinisLry o HealLh
Peru 1ulio Quevedo Linares NinisLerio de Salud
8eaLrlz Secln SanLisLeban
PhIlIppInes Rhodora Andrea N. Concepcion World AssociaLion or Psychosocial RehabiliLaLion-
Philiippines
Yolanda L. Cliveros DeparLmenL o HealLh
Poland Jan Czeslaw Czabala lnsLiLuLe o PsychiaLry and Neuroloy
Crazyna Herczynska
Anna Firkowska Academy o Special LducaLion
Joanna Clodkowsa
KrysLyna Nrualska Polish AssociaLion o Persons wiLh NenLal Handicap
Portugal Naria Joo HeiLor Dos SanLos Direco Ceral da Saude
Qatar Lddie N. Dennin Shaallah CenLer or Children wiLh Special Needs
RepublIc of korea Nyoun-Cyun Ko Korean AssociaLion or Lhe NenLally Disabled
1ae-Yeon Hwan Yonin NenLal HospiLal
RepublIc of Moldova AnaLol Nacu NinisLry o HealLh and Social ProLecLion
88
MMR S1A1S Of WHO,
ASSOCIA1 MMRS
Of WHO, ARAS OR
1RRI1ORIS
RepublIc of VIet Nam Frederique F. 8erer Family Nedical PracLice (FNP) cenLer
Ly Noc Kinh NinisLry o HealLh
Do 1huy Lan NaLional PsychiaLric HospiLal
Cao Va 1uan
Nhiem Xuan 1ue NaLional coordinaLin council on disabiliLy
RomanIa Alexandra Carmen Cra Family physician
RussIan federatIon Zurab llyich Kekelidze Serbsky NaLional Research CenLer or Social and
Forensic PsychiaLry
Rwanda Yvonne KayiLeshona Handicap inLernaLional - Rwanda
AuusLin Nziuheba
PaLona Nulisanze NinisLere de la SanL
Samoa La-1oya Lee NinisLry o HealLh
lan Parkin
FuaLino ULumapu
SaudI ArabIa Abdul Hameed Al Habeeb NenLal HealLh and Social Sciences
Naseem A. Qureshi
Senegal Namadou Habib 1hiam NinisLere de sanL eL de la PrvenLion Ndicale
SerbIa Aleksandra Nilicevic Kalasic CiLy lnsLiLuLe o CeronLoloy, Home 1reaLmenL and Care
Sladjana Narkovic NinisLry o Labour, LmploymenL and Social Policy
SIerra Leone Ldward A. Nahim NinisLry o HealLh and SaniLaLion
SIngapore Hsin Chuan Alex Su NinisLry o HealLh
Khaw 8oon Wan
SlovakIa Nisova lveLa AssociaLion or Help Lo Lhe NenLally Handicapped
Persons in Slovakia
RberL Lezo SpolocnosLi Downovho syndromu na Slovensku
PiaLkova Nadalna NinisLry o Labour, Social Aairs and Family
Naria Cronasova Alliance o CranizaLions o Disabled Persons in
Slovakia
Lva Palova NinisLry o HealLh
SlovenIa Nadja Cobal NinisLry o HealLh
Janja CoLic PajnLar
1omaz Jereb NaLional AssociaLion or NenLally Handicapped Persons
o Slovenia (SoziLje)
Andrej Narusic lnsLiLuLe o Public HealLh o Lhe Republic o Slovenia
South AfrIca Pam NcClaren SouLh Arica FederaLion or NenLal HealLh
Corrie Ras
SpaIn Juana Zarzuela Domlnuez Downs Syndrome AssociaLion (ASPANlDC)
Raael NarLlnez-Leal Spanish AssociaLion o Proessionals in lnLellecLual
DisabiliLies (ALLCNR)
Ramn Novell Alsina
Luis Salvador-Carulla World PsychiaLric AssociaLion - lnLellecLual DisabiliLy
secLion
SrI Lanka Raja S. Narasinhe CenLral Council o Disabled Persons
2 AP P NDI X
89
2 AP P NDI X
MMR S1A1S Of WHO,
ASSOCIA1 MMRS
Of WHO, ARAS OR
1RRI1ORIS
Sweden KenL C. Lricsson Uppsala UniversiLy
Helena Silverhielm NaLional 8oard o HealLh and Welare
SwItzerland Narkus 8uri Cce dral des assurances sociales
Calli CarminaLi Ciuliane World PsychiaLric AssociaLion
Viviane Cuerdan AssociaLion lnLernaLionale de Recherche ScienLique en
aveur des personnes Handicapes NenLales (AlRHN)
Heidi Lauper lnsLiLuLions sociales suisses pour personnes handicapes
(lNSCS)
Jose NarLin
SyrIan Arab RepublIc Diala Ll-Haj Are NinisLry o Labour, HealLh and Social Aairs
Ferial Hamid VocaLional RehabiliLaLion lnsLiLuLes or Lhe Disabled
Pier Sheniara NinisLry o HealLh
SaInt LucIa

Caroline Archibald 1he NaLional council o and or persons wiLh disabiliLies
Lancia lsidore
SurIname N. Aloe NinisLry o HealLh
1haIland Panpimol LoLrakul Rajanukul lnLellecLual DisabiliLy lnsLiLuLe
1he former Yugoslav
RepublIc of MacedonIa
Vasilka Dimoska Republic cenLre or supporL o persons wiLh inLellecLual
disabiliLy (PCRAKA)
1onga Lavinia SaLini PeLesaiLa & Alona Disabled CenLre
1okelau (1) 1ekie 1 losea NinisLry o HealLh
1rInIdad and 1obago lan HypoliLe NinisLry o HealLh
1unIsIa LoL 8en Lellahom NinisLere des Aaires Sociales, de la SolidariL des
1unisiens a l'LLraner
1urkey Nihal lldes NinisLry o HealLh
Uganda Richard Nuisha Persons wiLh DisabiliLies Uanda
Sheila Z. NDyanabani NinisLry o HealLh
UkraIne Raisa Kravchenko ChariLy AssociaLion o Help Lo Disabled Persons wiLh
lnLellecLual DissabiliLies (Dzherela)
lor A. NarLsenkovsky Ukrainian lnsLiLuLe o Social and Forensic PsychiaLry and
Narkoloy
Cla PeLrichenko NinisLry o HealLh
lrina Pinchuk Ukrainian HealLh Care NinisLry
Yuliya Zinova WHC Cce Ukraine
UnIted Arab mIrates Noura lbrahim Almarri Sharjah CiLy or HumaniLarian Services
UnIted kIngdom of Great
rItaIn and Northern Ireland
David Felce lnLernaLional AssociaLion or Lhe ScienLic SLudy o
lnLellecLual DisabiliLy (lASSlD)
Narion 1hompson DeparLmenL o HealLh (ScoLland)
Alana Wol DeparLmenL o HealLh (Lnland)
UnIted RepublIc
of 1anzanIa
Josephine 8akhiLa Amani CenLre or Persons wiLh NenLal DisabiliLies
UnIted States of AmerIca Valerie 8radley Human Services Research lnsLiLuLe
ChrisLopher J. Hickey DeparLmenL o HealLh and Human Services
Charlie Lakin UniversiLy NinnesoLa
90
MMR S1A1S Of WHO,
ASSOCIA1 MMRS
Of WHO, ARAS OR
1RRI1ORIS
Uruguay Nilda Rama VieyLes Asociacin Nacional de padres de personas con
discapacidad inLelecLual (ANR)
AlberLo Della CaLLa NinisLerio de Salud Publica
Cuillermo NaniLo
Cabriela NarLoy
UzbekIstan Nariza Khodjaeva NinisLry o HealLh
Kharabara Crioriy
SunaLulla SuleyNanov
West ank and
Gaza StrIp (1)
CLhman Karameh NinisLry o HealLh
Ayesh N. Samour
Yemen Raja Abdulah Ahmed Almasabi Arab Human RihLs FoundaLion
ZambIa James Nun'omba Zambia AssociaLion or Children wiLh Learnin
DisabiliLies (ZACALD)
Kaluna Nahone Lunice
ZImbabwe Alice 8. ChaLindo L'Arche Zimbabwe
Nunyaradzi 8. 1. Nyanhono
ChrisLine 1awenwa
1awenwa Chinyowa
Dorcas Shirley SiLhole NinisLry o HealLh and Child Welare
LlizabeLh NaLare Dominican ConvenL Fundayi House
(1) AssocIate Members of WHO, Areas and 1errItorIes
2 AP P NDI X
91
3 AP P NDI X
AtIas-lD questionnaire
1erms wiLh are dened in Lhe lossary o Lerms.
1. DehnItIon
1.1 WhaL Lerm is more requenLly used Lo describe inLellecLual disabiliLies in your counLry7 (l more Lhan one, rank Lhe mosL
commonly used Lerms wiLh 1 bein Lhe mosL common Lerm. Choose Lhe mosL similar equivalenL in Lnlish)
DevelopmenLal disabiliLies NenLal disabiliLy
lnLellecLual disabiliLies NenLal handicap
Learnin disabiliLies NenLal reLardaLion
NenLal deciency NenLal subnormaliLy
CLher (Please speciy):
1.2 WhaL dianosLic and/or classicaLion is mosL oLen used in your counLry Lo deLermine Lhe presence o inLellecLual
disabiliLies7
AANR criLeria lCD-10
DSN-lV lCF
Proessional opinion CLher (Please speciy)
2. pIdemIology of Intellectual dIsabIlItIes
2.1 Could you esLimaLe Lhe number o persons wiLh inLellecLual disabiliLy in your counLry (per 100,000 inhabiLanLs)7
2.1.1 WhaL is Lhe inormaLion source and year or Lhis ure7
2.2 ln Lhe lasL year, how many persons wiLh inLellecLual disabiliLy were in Louch wiLh inLellecLual disabiliLies services
(per 100,000 inhabiLanLs)7
2.2.1 WhaL is Lhe inormaLion source and year or Lhis ure7
3. PolIcIes, programmes and legIslatIon
3.1 Does your counLry have a specic naLional policy/proramme relaLed Lo Lhe inLellecLual disabiliLies eld7
Yes, or adulLs only
Yes, or children, adolescenLs and adulLs
Yes, or children and adolescenLs only
No
3.1.1 l yes, in which Lype o policy is iL addressed7 (Check all LhaL apply)
DisabiliLy AcL lncome
LducaLion Labour
HealLh NenLal HealLh
Housin Social Welare
Human RihL s YouLh ProLecLion
Family CLher (Please speciy):
3.1.2 l no, are inLellecLual disabiliLies specically addressed in any ocial naLional policy7
Yes No l yes, please speciy :
Appendix 3
92
3.2 WhaL level o overnmenL is primarily responsible or services Lo persons wiLh inLellecLual disabiliLy7
NaLional level Shared beLween levels o overnmenL
Reional level
Local level CLher (Please speciy):
3.3 Which DeparLmenL unds and/or moniLors prorammes or adulLs or children/adolescenLs wiLh inLellecLual
disabiliLy7 (Please rank Lhe ollowin, wiLh 1 bein Lhe mosL responsible)

ChIldren/Adolescents Adults
DisabiliLy
LducaLion
Family Welare
HealLh
Housin
JusLice
lncome
Labour
NenLal HealLh
Social Welare
YouLh ProLecLion
CLher: (Please speciy)
3.4 Does any law sLrive Lo proLecL persons wiLh inLellecLual disabiliLy7
Yes No
3.4.1 l yes, please speciy Lhe name o Lhis/Lhese law(s):
3.5 ls Lhere or has Lhere been any public awareness campain on inLellecLual disabiliLies carried ouL wiLhin your
counLry (sLima, human rihLs, social inLeraLion, healLh care, educaLion, employmenL)7
Yes No
3.5.1 l yes, please speciy Lhe year, Lopic and sloan o Lhe laLesL campain:
4. fInancIng and benehts
4.1 How are inLellecLual disabiliLies services in your counLry unded7 Please rank Lhe ollowin, wiLh 1 bein Lhe mosL imporLanL,
and aLLribuLe Lo each one a percenLae.
1ax-based undin (NaLional/Federal overnmenL) %
CuL o pockeL (Consumer/PaLienL/Family) %
Social healLh insurance %
PrivaLe insurance %
LxLernal CranLs %
NCCs/non-proL oranizaLions %
CLher (Please speciy): %
3 AP P NDI X
93
3 AP P NDI X
4.2 WhaL percenLae o all inLellecLual disabiliLies services are provided in:
(1oLal should equal 100%)
Public secLor %
PrivaLe secLor %
NCCs/non-proLs oranizaLions %
CLher (Please speciy): %
4.3 WhaL overnmenL beneLs are provided (ree or subsidized) Lo an adulL wiLh inLellecLual disabiliLy or a
amily who has a child wiLh inLellecLual disabiliLy7
(Check all LhaL apply)
No beneLs are provided
DisabiliLy pension
HealLh securiLy
Social securiLy
Subsidies or ood, housin, medicaLion and/or LransporLaLion
DirecL paymenL o money or a specic purpose
Fiscal/1ax beneLs
CLher (Please speciy) :
4.4 WhaL is Lhe percenLae o persons wiLh inLellecLual disabiliLy or amilies o persons wiLh inLellecLual disabiliLy LhaL are acLually
receivin Lhe overnmenL beneLs Lo which Lhey are leally enLiLled7
<10% 51%-74%
11% - 25% >75%
26% - 50%
5. ServIces to chIldren, adolescents and adults
5.1 How are social and healLh care services or persons wiLh inLellecLual disabiliLy oranized in your counLry
(please check more Lhan one i appropriaLe)
Yes No
a) Specic services or persons wiLh inLellecLual disabiliLy
b) 1oeLher wiLh services or persons wiLh any kind o disabiliLies
c) 1oeLher wiLh services or persons wiLh menLal disorder
d) 1oeLher wiLh services or eneral populaLion
e) CLher (Please speciy):
5.2 Please indicaLe Lhe services LhaL are available Lo adulLs or children/adolescenLs wiLh inLellecLual disabiliLy:
5.2.1 InpatIent - ResIdentIal servIces" Children/AdolescenLs AdulLs
Yes No Yes No
ShorL Lerm (< 1 monLh)
lnpaLienL healLh service
Lon Lerm (> 1 monLh)
SupporL Lo independenL livin
94
Children/AdolescenLs AdulLs
Yes No Yes No
FosLer homes
Croup homes
Nursin homes
Asylum-Lype insLiLuLions
lD exclusive
Nixed NenLal DisabiliLy
Ceneral HealLh
Specic or persons wiLh lD
PsychiaLric
Forensic
Specialized in-paLienL psychiaLric insLiLuLion
5.2.2 Out patIent care" Children/AdolescenLs AdulLs
Yes No Yes No
Primary healLh services
Specialized healLh services
Screenin/AssessmenL/CrienLaLion
Larly inLervenLion
lndividual supporL/Case manaemenL
Specialized psycholoical/psychiaLric inLervenLions
5.2.3 RehabIlItatIon/Day care " Children/AdolescenLs AdulLs
Yes No Yes No
Psycho-social RehabiliLaLion
Physical RehabiliLaLion
Day cenLre/hospiLal
5.2.4 ducatIon Children/AdolescenLs AdulLs
Yes No Yes No
Special Schools
Special class in reular/inLeraLed school
SupporL in reular class
Homebound services
Pre-school/KinderarLen
3 AP P NDI X
95
3 AP P NDI X
Children/AdolescenLs AdulLs
Yes No Yes No
LiLeracy proramme
AdulL educaLion proramme
Proessional Lrainin
5.2.5 OccupatIonal/VocatIonal/Work servIces" AdulLs
Yes No
ShelLered employmenL
Work sLaLions
SupporLed employmenL
Ceneral work skills, Lrainin or developmenL
5.2.6 Other servIces Children/AdolescenLs AdulLs
Yes No Yes No
Leisure acLiviLies
1ransporLaLion
AssisLive Lechnoloy
RihLs/advocacy supporL
Supply o meal/ood
5.2.7. Other (Please speciy):
5.3 Please indicaLe Lhe prevenLive inLellecLual disabiliLies services available in your counLry.
SupplemenLaLion o dieL, e.. iodinaLion o salLs, olic acid in bread
1esLs Lo deLecL phenylkeLonuria, lead, hypoLhyroidism eLc.
CeneLic counsellin and prenaLal LesLin
Prorammes relaLed Lo prevenLion o alcohol/dru abuse durin prenancy
5.4 Are Lhere special provisions wiLhin Lhe jusLice sysLem or oenders wiLh inLellecLual disabiliLy7
Children/AdolescenLs AdulLs None
5.5 ls Lhere a overnmenLal inLellecLual disabiliLies proLecLion sysLem or:
Children/AdolescenLs AdulLs None
5.6 Do Lhe ollowin issues have an impacL on access Lo inLellecLual disabiliLies services in a Limely manner7
5.6.1 Socio-economical sLaLus
CreaL impacL Some impacL No impacL
5.6.2 Ceoraphical locaLion (1erriLory)
96
5.6.3 Urban / Rural locaLion
5.6.4 LLhniciLy
5.6.5 Reliion
5.6.6. CLher (Please speciy):
5.7 ls Lhere a publicaLion or reerence LhaL reers Lo inLellecLual disabiliLies services in your counLry7
Yes No
l yes, please ive Lhe reerence and/or aLLach a copy o Lhe publicaLion(s).
6. ServIces to famIlIes
6.1 Please indicaLe Lhe services available in mosL o Lhe reions o your counLry Lo amilies o persons wiLh inLellecLual disabiliLy
(check all LhaL are available):
Psycholoical supporL/counsellin
LducaLion on inLellecLual disabiliLies
RespiLe care
Home aid
RihLs/advocacy supporL
7. Human resources
7.1. Which proessionals are more involved in workin wiLh persons wiLh inLellecLual disabiliLy7 (Please rank all LhaL apply, wiLh 1
bein Lhe hihesL)
Physicians PsycholoisLs
Nurses Special educaLors
CccupaLional LherapisLs Speech and lanuae LherapisLs
PaediaLricians Social workers
PhysioLherapisLs ArL/music LherapisLs
Primary healLh careworkers 1eachers
PsychiaLrisLs CLher (Please speciy):
7.2 Which proessionals have Lhe opporLuniLy or in-service Lrainin in Lhe supporL o persons wiLh inLellecLual disabiliLy7
Physicians PsycholoisLs
Nurses Special educaLors
CccupaLional LherapisLs Speech and lanuae LherapisLs
PaediaLricians Social workers
3 AP P NDI X
97
3 AP P NDI X
PhysioLherapisLs ArL/music LherapisLs
Primary healLh care workers 1eachers
PsychiaLrisLs CLher (Please speciy):
7.3 ls Lhere a Lrainin module in inLellecLual disabiliLies incorporaLed inLo Lhe under-raduaLe or raduaLe curriculum wiLhin Lhe
counLry7 (Check all LhaL apply)
Under-raduaLe CraduaLe No Lrainin oered
Physicians
Nurses
CccupaLional LherapisLs
PaediaLricians
PhysioLherapisLs
Primary healLh care workers
PsychiaLrisLs
PsycholoisLs
Special educaLors
Speech and lanuae LherapisLs
Social workers
ArL/music LherapisLs
1eachers
CLher (please speciy):
7.4 Are Lhere naLional minimal sLandards o care expecLed rom proessionals workin in Lhe eld o inLellecLual disabiliLies7
7.4.1 Cnly or overnmenLal oranizaLions
Yes No
7.4.2 AmonsL privaLe oranizaLions
Yes No
7.4.3 l yes, how are sLandards mainLained7 (Check all LhaL apply).
Proessional cerLicaLion and mainLenance o compeLency
ln-service Lrainin
Clinical supervision o workers
Usae o clinical pracLice uidelines
JusL Lhe iniLial habiliLaLion
CLher (Please speciy).
8. Nongovernmental OrganIzatIons (NGOs)
8.1 Are Lhere any acLive naLional NCCs in your counLry which ocus mainly on inLellecLual disabiliLies7
Yes No
8.1.1 l yes, please lisL Lhree o Lhese NCCs (mainly Lhose acLive aL Lhe naLional level):
98
8.1.2 WiLh which inLellecLual disabiliLies acLiviLies have Lhis/Lhese NCC/s been involved7 (Check all LhaL apply)
Advocacy Human rihLs Lrainin
DirecL services Policy and sysLems developmenL
LducaLion PrevenLion
Family Proessional developmenL
HealLh SupporL/Sel-help/LmpowermenL
Housin CLher (Please speciy):
RehabiliLaLion
Work/LmploymenL
9. InternatIonal organIzatIons
9.1 Are inLernaLional oranizaLions (direcLly or Lhrouh Lheir reional or counLry oces) involved in providin any assisLance in Lhe
developmenL and/or mainLenance o inLellecLual disabiliLies services in your counLry7
Yes No
9.1.1 l yes, please lisL Lhree:
9.1.2 WiLh which inLellecLual disabiliLies acLiviLies have Lhis/Lhese inLernaLional oranizaLion(s) been involved7 (Check all LhaL apply)
Advocacy Human rihLs Lrainin
DirecL services Policy and sysLems developmenL
LducaLion PrevenLion
Family Proessional developmenL
HealLh SupporL/Sel-help/LmpowermenL
Housin CLher (Please speciy):
RehabiliLaLion
Work/LmploymenL
10. Data collectIon and research
l dierenL rom previously sLaLed on pae 1, please indicaLe Lhe conLacL deLails o Lhe person who compleLed Lhe ollowin
secLion:
10.1 Are specic daLa abouL inLellecLual disabiliLies included in any o your counLry's Annual ReporLs7
Yes No
10.1.1 l yes, please ive Lhe reerence and/or aLLach a copy o Lhe publicaLion(s).
10.2 ls Lhere any epidemioloical daLa collecLion sysLem or inLellecLual disabiliLies7
Yes No
10.3 ls Lhere any services delivery daLa collecLion sysLem or inLellecLual disabiliLies7
Yes No
10.4 Which are Lhe besL sources Lo obLain epidemioloical daLa on persons wiLh inLellecLual disabiliLy in your counLry7 (Please speciy):
3 AP P NDI X
99
3 AP P NDI X
10.5 ls Lhere any research on inLellecLual disabiliLies done in your counLry7
Yes No
10.5.1 l yes, which Lypes o oranizaLions are carryin ouL research on inLellecLual disabiliLies in your counLry7 (Check all LhaL apply)
CovernmenL lnLernaLional oranizaLion or supranaLional
UniversiLies NCCs
PharmaceuLical indusLry FoundaLions
10.5.2 l yes, whaL are Lhe sources o undin o Lhis/Lhese research on inLellecLual disabiliLies in your counLry7 (Check all LhaL apply)
Public
PrivaLe
JoinL public/privaLe secLor venLures
lnLernaLional oranizaLion or supranaLional
NCCs
10.5.3 ls Lhere a naLional research cenLre which does research in inLellecLual disabiliLies in your counLry7
Yes No
l yes, please lisL conLacL deLails (head o research, address, websiLe, eLc.)
10.5.4 Name Lhree common areas o research in inLellecLual disabiliLies bein carried ouL in your counLry:
11. Comments
11.1 Do you have any commenLs on Lhis quesLionnaire or oLher inormaLion LhaL you wanL Lo include7 l so, please use Lhe box
below Lo ive us your eedback.
100
Appendix 4
CIossary of terms used in the
AtIas-lD questionnaire
1he deniLions used in Lhis lossary are simply workin deniLions or
Lhe purpose o Lhis projecL and are noL ocial WHC deniLions. ln
case o discrepancies beLween lossary LranslaLions, Lhe Lnlish version
should prevail.
AduIt education programme:
Proramme LhaL provides a ull rane o educaLional services rom
basic liLeracy Lhrouh Lhe primary diploma and collee courses.
AnnuaI reports:
lnormaLion coverin healLh or social services uLilizaLion, available
resources (services, human resources), prorammes and allocaLion
o unds or each year by Lhe overnmenL.
Assistive technoIogy:
Any iLem or producL sysLem LhaL is used Lo increase, mainLain, or
improve uncLional capabiliLies o individuals wiLh disabiliLy.
AsyIum-type institutions:
Lare aciliLy which is noL communiLy inLeraLed and which oers
eneral care or residenLs includin a place Lo live, work, acLiviLies
durin Lhe day, medical and psychiaLric care. As some asylums are
exclusively or Lhe housin o persons wiLh inLellecLual disabiliLy,
oLhers have specic seLLins or persons wiLh lD, Lo elderly persons
or are desLined Lo receive persons wiLh inLellecLual disabiliLy as well
as persons wiLh menLal disabiliLies.
Data coIIection system:
An oranized inormaLion sysLem or aLherin inormaLion abouL
service uLilizaLion.
Diagnostic/CIassication:
1here are numerous dianosLic and/or classicaLions o inLellecLual
disabiliLies. 1he our mosL commonly used ones are Lhe AANR
deniLion, Lhe DSN-lV, Lhe lCD, and lCF.
a) American Association for Mental letarJation (AAMl classihca-
tion (2002. "NenLal reLardaLion is a disabiliLy characLerized by si-
nicanL limiLaLions boLh in inLellecLual uncLionin and in adapLive
behaviour as expressed in concepLual, social, and pracLical adapLive
skills. 1his disabiliLy oriinaLes beore ae 18."
b) Diagnostic anJ Statistical Manoal of Mental DisorJers (DSM-lV.
deniLion "SinicanLly sub averae eneral inLellecLual uncLionin
LhaL is accompanied by sinicanL limiLaLions in adapLive uncLion-
in in aL leasL Lwo o Lhe ollowin skill areas: communicaLion, sel-
care, home livin, social/inLerpersonal skills, work, leisure, healLh,
and saeLy. 1he onseL musL occur beore ae 18 years." Accordin
Lo Lhe associaLion, Lhere are ve derees o menLal reLardaLion:
mild, moderaLe, severe, proound, and severiLy unspecied.
c) lnternational Statistical Classihcation of Disease anJ lelateJ
lealt/ lro/lems (lCD. "NenLal reLardaLion is a condiLion o
arresLed or incompleLe developmenL o Lhe mind, which is especially
characLerized by impairmenL o skills maniesLed durin Lhe devel-
opmenLal period, skills which conLribuLe Lo Lhe overall level o inLel-
lience, i.e. coniLive, lanuae, moLor, and social abiliLies. Derees
o menLal reLardaLion are convenLionally esLimaLed by sLandardized
inLellience LesLs. 1hese measures provide an approximaLe indica-
Lion o Lhe deree o menLal reLardaLion [mild menLal reLardaLion,
moderaLe menLal reLardaLion, severe menLal reLardaLion, proound
menLal reLardaLion, oLher menLal reLardaLion, and unspecied
menLal reLardaLion]." (WHC, 1992).
d) 1/e lnternational Classihcation of lonctioning, Disa/ility anJ
lealt/ (lCl. 1he lCF proposed LhaL Lhe concepLion o inLellecLual
disabiliLy no loner be rearded as a disease or even Lhe simple
physical or psycholoical consequence o disease, buL raLher as
a problem o uncLionin o Lhe whole person. ln Lhis model,
uncLionin is considered as inLeracLion o Lhe person wiLh his
environmenL and is Lhe resulL o inLeracLions beLween a person who
is experiencin healLh problems and environmenLal acLors. 1he
picLure produced by Lhis combinaLion o acLors and dimensions is
o "Lhe person in his or her world" (WHC, 2001).
EarIy intervention services:
Services Lo children and Lheir amilies or Lhe purpose o lessenin
Lhe eecLs o Lhe inLellecLual disabiliLy condiLion. Larly inLervenLion
may bein aL any Lime beLween birLh and school ae.
Empowerment:
Nechanism whereby individuals, oranizaLions, and communiLies
ain sLrenLh and masLery in Lhe manaemenL o Lheir aairs.
EpidemioIogicaI data:
Lpidemioloical daLa ocuses on Lhe exLenL and naLure o inLel-
lecLual disabiliLies as Lhis inormaLion is used Lo plan and evaluaLe
sLraLeies Lo prevenL inLellecLual disabiliLies and as a uide Lo Lhe
manaemenL o services or Lhose who have inLellecLual disabiliLies.
lL usually incorporaLes incidence, prevalence and requency raLes.
Forensic residentiaI services:
Provision o care Lo persons wiLh inLellecLual disabiliLy in a special-
ized hospiLal or criminal oenders.
Foster home:
Provision o a livin arranemenL in a household raLher Lhan wiLh
Lhe amily o Lhe person wiLh inLellecLual disabiliLy.
Funding of inteIIectuaI disabiIity services:
HealLh and social services Lo persons wiLh inLellecLual disabiliLy can
be unded by one or many o Lhe ollowin meLhods:
1ax-based undin: Way o nancin services raised by eneral
LaxaLion.
CuL-o-pockeL - Way o nancin services by paymenLs made by
Lhe user or his / her amily as Lhe need arises.
Social insurance: Way o nancin services by a xed percenLae o
income LhaL everyone above a cerLain level o income is required Lo
pay Lo Lhe overnmenL-adminisLered healLh insurance und which,
in reLurn, pays or parL or all o consumers' services. WiLhin Lhose
sysLems, persons receive care even i Lhey don'L conLribuLe Lo Lhe
sysLem due Lo Lheir low-income level.
PrivaLe insurance: Way o nancin by a premium LhaL social/
healLh-care consumers pay volunLarily Lo a privaLe insurance com-
pany which, in reLurn, pays or parL or all o Lheir care.
LxLernal ranLs: Way o nancin by money provided by oLher
counLries or inLernaLional oranizaLions or direcL or indirecL services
Lo persons, or a amily member, wiLh inLellecLual disabiliLy.
CeneraI work skiIIs, training or deveIopment:
Any Lrainin or which an employee would normally be expecLed Lo
underLake in order Lo be able Lo carry ouL Lhe core duLies associaLed
wiLh his / her employmenL.
Covernment benets:
8eneLs LhaL are provided by Lhe overnmenL as parL o Lhe leal
rihLs o persons wiLh inLellecLual disabiliLies. 1hese beneLs could
be provided in dierenL ways as moneLary, access Lo services,
personal sLa care, eLc.
CovernmentaI inteIIectuaI disabiIities protective system:
A overnmenL based proLecLive supervision sysLem or Lhe proLec-
Lion o persons wiLh inLellecLual disabiliLy and Lheir asseLs. 1his
sysLem oversees Lhe proLecLion o persons wiLh inLellecLual disabiliLy
unable Lo Lake care o Lhemselves, Lhrouh appropriaLed measures
Lo Lheir condiLion and siLuaLion, while ensurin LhaL all decisions
aecLin Lheir well-bein and properLy reecL Lheir besL inLeresLs,
respecL Lheir rihLs and saeuard Lheir auLonomy. 1his Lype o pro-
LecLive supervision can Lake Lhe orm o a curaLorship, o a LuLorship,
o an advisor Lo a person o ull ae or o a LuLorship Lo a minor.
Craduate curricuIum:
NainsLream or conLinuin educaLion beyond a bachelor's deree,
oered by a UniversiLy or any reconized educaLional insLiLuLion.
4 AP P NDI X
101
4 AP P NDI X
Croup homes:
CommuniLy siLuaLed livin aciliLy where more Lhan one person
wiLh inLellecLual disabiliLy resides.
Home aid:
Help aL home provided Lo Lhe amily o a person wiLh inLellecLual
disabiliLies. Lxamples include parenL Lrainin, counsellin, and
workin wiLh amily members Lo idenLiy, nd, or provide oLher
necessary help. 1he oal is Lo prevenL Lhe person wiLh inLellecLual
disabiliLy rom bein placed ouLside o Lhe home. (AlLernaLe Lerm:
in-home supporLs)
Homebound services:
Schoolin done aL home by LuLors or special educaLors or persons
ln-service training:
1rainin services oered Lo Lhe personnel workin wiLh persons
wiLh inLellecLual disabiliLies durin Lheir work hours or paid exLra-
hours.
lndividuaI support/Case management services:
Process o ollow up individually Lo persons wiLh inLellecLual disabili-
Lies, includin assessmenL, service plannin and review or process
or co-ordinaLin services and inpuLs rom dierenL aencies and
secLors around individual needs.
lnpatient - residentiaI services:
Services where a person wiLh inLellecLual disabiliLy resides.
lnteIIectuaI disabiIity:
Reers Lo a condiLion o arresLed or incompleLe developmenL o Lhe
mind LhaL can occur wiLh or wiLhouL any oLher physical or menLal
disorders and is characLerized by impairmenL o skills and overall
inLellience in areas such as coniLion, lanuae, and moLor and
social abiliLies. 1his includes children, adolescenLs, adulLs and Lhe
elderly populaLion.
Leisure activities:
Service or persons wiLh inLellecLual disabiliLy, oLen in a aciliLy LhaL
provides acLiviLies and supporL, ocusin on relaxaLion, amusemenL
and social inLeracLion.
Literacy programme:
Reers Lo a proramme LhaL aims aL Lhe acquisiLion o Lhe abiliLy Lo
read and wriLe by persons wiLh inLellecLual disabiliLy.
LocaI IeveI:
Reers Lo municipal auLhoriLies.
NinimaI standards of care:
Cuidelines esLablishin a minimal sLandard Lo ensure proper care or
Lhe persons wiLh inLellecLual disabiliLy. 1he proessionals workin in
Lhe inLellecLual disabiliLies eld are expecLed Lo achieve compliance
wiLh each sLandard. While Lhe sLandards are qualiLaLive, Lhey pro-
vide a Lool or judin Lhe qualiLy o lie o consumers and improve
Lhe qualiLy and appropriaLeness o care and oLher services
NationaI IeveI:
Reers Lo naLional or ederal auLhoriLies.
NationaI poIicy:
An oranized seL o values, principles, objecLives and areas o acLion
Lo improve Lhe siLuaLion o persons wiLh inLellecLual disabiliLy in Lhe
counLry, Lhe prioriLies amon Lhose oals and Lhe main direcLions
or aLLainin Lhem.
NationaI programme:
A naLional plan o acLion LhaL includes Lhe lines o acLion required
Lo ive eecL Lo a policy. lL describes and oranizes acLions aimed aL
Lhe achievemenL o Lhe objecLives.
NationaI research centre:
NaLional cenLre LhaL aims aL supporLin research, policy, and pro-
ramme developmenL naLionwide.
NongovernmentaI organizations (NCOs):
VolunLary oranizaLions, chariLable roups, service-user, advocacy
roups or proessional associaLions.
Nursing homes:
A aciliLy or Lhe care o individuals who do noL require hospiLaliza-
Lion and who cannoL be cared aL home. Usually sLaed 24 hours
per day.
OccupationaI/VocationaI/Work services:
8road rane o services desined Lo address skills necessary or
parLicipaLion in job-relaLed acLiviLies. Services LhaL include job nd-
in/developmenL, assessmenL and enhancemenL o work-relaLed
Lrainin and skills, aLLiLudes, and behaviours as well as provision o
job experience Lo persons wiLh inLellecLual disabiliLy.
Offenders with inteIIectuaI disabiIity:
A person wiLh inLellecLual disabiliLy who has been convicLed o a
crime by a courL o law.
Out patient care:
1he provision o care Lo persons wiLh inLellecLual disabiliLy ouLside
o a hospiLal seLLin.
PhysicaI RehabiIitation:
lmprovemenL o Lhe independence and qualiLy o lie o Lhe person
wiLh inLellecLual disabiliLy Lhrouh physical Lherapy.
Preventive inteIIectuaI disabiIity services:
All oranized acLiviLies in Lhe communiLy Lo prevenL Lhe occurrence
as well as Lhe evoluLion o inLellecLual disabiliLy, includin Lhe Limely
applicaLion o means Lo provide inormaLion and educaLion on Lhe
known causes o inLellecLual disabiliLy, or eLioloy.
Primary heaIth care services:
1he rsL level o care and Lhe iniLial poinL o conLacL LhaL a paLienL
has wiLh Lhe healLh sysLem. CLen, primary healLh care beins wiLh
Lhe amily physician or communiLy healLh nurse. Primary healLh
care is meanL Lo be Lhe rsL sLep in obLainin care, emphasizin
healLh promoLion and illness prevenLion, and providin a link Lo
more specialized care, such as LhaL provided in hospiLals.
ProfessionaI training:
LducaLion wiLh specic reerence Lo develop specic skills Lo eLLin
or reLainin a job.
Psycho-sociaI rehabiIitation:
Process o aciliLaLin an individual's rehabiliLaLion and social Lrain-
in Lo an opLimal level o independenL uncLionin in everyday
acLiviLies in Lhe communiLy.
Psychiatric residentiaI services:
1he provision o care Lo persons wiLh inLellecLual disabiliLy in a
hospiLal LhaL provides menLal healLh services in aL leasL one separaLe
psychiaLric uniL wiLh specially allocaLed sLa and space or Lhe LreaL-
menL o persons wiLh menLal illness.
PubIic awareness campaign:
PubliciLy and/or inormaLion campain Lo supporL Lhe developmenL
o persons wiLh inLellecLual disabiliLies, in a eneral or, specic
domain as anLi-sLima, social inLeraLion, human rihLs, educaLion,
employmenL access, social inLeraLion and healLh care.
RegionaI IeveI:
Reers Lo sLaLe, deparLmenLal auLhoriLies or province.
RehabiIitation/Day care:
Services iven Lo persons wiLh inLellecLual disabiliLy in Lhe orm o
knowlede, skills and Lrainin Lo help Lhem achieve Lheir opLimum
level o social and psycholoical uncLionin and developmenL.
1hese services can Lake Lhe orm o psycho-social rehabiliLaLion,
medical and/or physical rehabiliLaLion, as well as individual supporL
on individual needs.
Respite care:
Provision o periodic relie Lo Lhe usual amily members and riends
who care or Lhe person wiLh inLellecLual disabiliLy. 1rained parenLs
or counsellors Lake care o Lhe person wiLh inLellecLual disabiliLy or
102
4 AP P NDI X
a brie period o Lime Lo ive amilies relie rom Lhe sLrain o carin
or Lhe person wiLh inLellecLual disabiliLy. 1his Lype o care can be
provided in Lhe home or in anoLher locaLion.
Rights/Advocacy support:
A combinaLion o individual and social acLions desined Lo raise
awareness and Lo ain poliLical commiLmenL, policy supporL, human
rihLs promoLion, social accepLance and healLh sysLems supporL or
inLellecLual disabiliLies oals.
5creening/Assessment/Orientation services:
Services desined Lo briey assess Lhe condiLion o persons wiLh
inLellecLual disabiliLy Lo advice abouL which services are needed
and Lo link him/her Lo Lhe mosL appropriaLe. Services may include
inLerviews, psycholoical LesLin, physical examinaLions includin
speech/hearin, and laboraLory sLudies.
5heItered empIoyment:
Work aciliLy or persons wiLh inLellecLual disabiliLy LhaL, or several
reasons, are noL able Lo Lake parL in Lhe reular labour markeL.
Persons do noL receive a normal salary and Lhe aim is Lo Lrain persons
in skills LhaL prepare Lhem or reular or supporLed employmenL.
5peciaI cIass in reguIar schooI:
SeparaLe classes or persons wiLh inLellecLual disabiliLy in a reular
school composed o persons boLh wiLh and wiLhouL inLellecLual
disabiliLy.
5peciaI schooI:
SeparaLe and exclusive school or persons wiLh inLellecLual disabiliLy.
5peciaIized heaIth services:
Provision o mainsLream specialized healLh services such as ani-
oplasLy procedures, dialysis, surery, Lrauma services, menLal healLh,
cancer LreaLmenL, denLal care, and speech Lherapy (eLc.) Lo persons
5peciaIized in-patient psychiatric institution:
Provision o care Lo persons wiLh inLellecLual disabiliLy in a special-
ized and separaLe psychiaLric insLiLuLion.
5upported empIoyment:
SupporLive services LhaL include assisLin individuals in ndin
work; assessin individuals' skills, aLLiLudes, behaviours, and
inLeresLs relevanL Lo work; providin vocaLional rehabiliLaLion
and/or oLher Lrainin; and providin work opporLuniLies. lncludes
LransiLional and supporLed employmenL services.
5upport in reguIar cIass:
SupporL o persons wiLh inLellecLual disabiliLy who are in reular
school classes in which children and adolescenLs boLh wiLh and
wiLhouL inLellecLual disabiliLy, aLLend lessons and school acLiviLies
LoeLher, wiLh assisLance provided by special educaLion desLined Lo
Lhose wiLh inLellecLual disabiliLy.
5upport to independent Iiving:
1he person has his own home, by renLin or by purchase, and
receives supporL rom services. Services assisL how Lo handle nan-
cial, medical, housin, LransporLaLion, and oLher daily livin needs.
Under-graduate curricuIum:
NainsLream or conLinuin educaLion leadin Lo a bachelor's deree,
oered by a UniversiLy or any reconized educaLional insLiLuLion.
Transportation:
A service provided Lo persons wiLh inLellecLual disabiliLy makin iL
possible or Lhem Lo Lravel ouL o Lheir residence Lo Lake parL in any
social acLiviLy.
Work stations:
An enclave wiLhin Lhe indusLry allowin a person(s) wiLh an inLel-
lecLual disabiliLy Lo work. Usually, buL noL always, inLeraLed in a
normal workin environmenL wiLh work crews LhaL do noL have an
inLellecLual disabiliLy.
5ources of information for
the gIossary
8raddock D, Hemp R, Rizzolo NC, CoulLer D, Haer L, 1hompson N.
1he sLaLe o Lhe sLaLes in developmenLal disabiliLies (6Lh ediLion).
WashinLon, DC, USA; American AssociaLion on NenLal ReLarda-
Lion, 2005.
Crosse C, Hockin 8. Discussion Paper. Social RehabiliLaLion: WhaL are
Lhe lssues7. Paper presenLed aL DVA NaLional RehabiliLaLion Con-
erence; SANL AusLralia, 2004.
Carcin N. Les dniLions eL les sysLemes de classicaLion. ln N.J. 1ass
eL D. Norin (Lds). La dcience inLellecLuelle. NonLral: LdiLions
CaLan Norin, 2003 :9-21.
Lachapelle Y. WhaL is inLellecLual disabiliLy7 Paper presenLed aL Lhe
NonLreal PAHC/WHC Conerence on lnLellecLual DisabiliLy, 2004.
www.monLrealdeclaraLion.com/docs/inLellecLual_disabiliLy.pd.
(accessed on July 2007)
Luckasson R, 8orLhwick-Duy S, 8unLinx WHL, CoulLer DL, Crai LN,
Reeve A, eL al. NenLal reLardaLion: deniLion, classicaLion, and
sysLems o supporL. 10Lh American AssociaLion on NenLal ReLarda-
Lion. 10Lh edn.; WashinLon, DC, USA, 2002.
NarLin JF. La dcience inLellecLuelle: ConcepLs de base. NonLral: Ldi-
Lions SainL-NarLin, 2002.
1ass NJ, Norin D. La dcience inLellecLuelle, NonLral: LdiLions
CaLan Norin, 2003.
WHC.1he lCD-10 ClassicaLion o NenLal and 8ehavioural Disorders
Clinical descripLions and dianosLic uidelines. Ceneva, SwiLzer-
land: WHC, 1992
WHC. 1he lnLernaLional ClassicaLion o FuncLionin, DisabiliLy and
HealLh (lCF). Ceneva, SwiLzerland: WHC, 2001.
WHC. NenLal HealLh ALlas. Ceneva, SwiLzerland: WHC, 2005.
WHC. NenLal HealLh Policy and Service Cuidance Packae: Advocacy
or menLal healLh. Ceneva, SwiLzerland: WHC, 2003.
WHC. World HealLh ReporL. Ceneva, SwiLzerland: WHC, 2001.
103
In medIcIne, It Is dIfhcult to hnd a case sImIlar to Intellectual dIsabIlIty. It Is a frequent and lIfelong condItIon,
whIch Is related to preventable etIologIes In many cases. It Is assocIated to multIple dIsabIlItIes and other
medIcal condItIons and It has consequences all along the lIfe-span, ImposIng a consIderable burden on famI-
lIes and caregIvers. However, Intellectual dIsabIlItIes were largely dIsregarded by natIonal and InternatIonal
organIzatIons. 1he Atlas Is a cornerstone to understandIng Intellectual dIsabIlItIes from a global perspectIve.
GIven the scarcIty of InformatIon on Intellectual dIsabIlItIes and the tradItIonal overshadowIng of thIs health
condItIon In any relevant global health report publIshed to date, WHO should be praIsed for puttIng Intellec-
tual dIsabIlItIes onto the health polIcy agenda, and for doIng so, not through a declaratIon, but by producIng a
full and comprehensIve report on the resources and care sItuatIon In 147 countrIes around the world. from the
general health care perspectIve, It may be hard to understand the effort carrIed forward by WHO`s Department
of Mental Health and Substance Abuse and the WHO Montreal CollaboratIng Centre for Research and 1raIn-
Ing In Mental Health In completIng thIs task. 1he report provIdes InformatIon that may be generally avaIlable
In other health areas but whIch was completely mIssIng In Intellectual dIsabIlItIes. 1hIs document goes far
beyond a servIce or an epIdemIologIcal atlas. 1hIs Is the hrst study to provIde world InformatIon on crItIcal
Issues related to Intellectual dIsabIlItIes, such as the termInology, use of classIhcatIon systems, fundIng, care
patterns, legIslatIon, publIc awareness campaIgns and traInIng, as well as role of NGOs and InternatIonal
organIzatIons and sources of InformatIon and research.
Luis Salvador-Carulla
Chair SecLion "PsychiaLry o lnLellecLual DisabiliLy"
World PsychiaLric AssociaLion
for the hrst tIme we have a comprehensIve vIew of thIs small but sIgnIhcant populatIon. It wIll provIde polIcy
planners, advocacy groups, and researchers a base from whIch to InvestIgate Issues more IntensIvely. Hope-
fully, It wIll provIde countrIes alIke wIth some Impetus to Improve supports to these persons and theIr famI-
lIes. Hopefully too, It mIght lead to greater cooperatIon among natIons for a common purpose. ReachIng out
by developed economIes to the less developed, In a true spIrIt of cooperatIon, rather than self-Interest, whIch
Is the hallmark of some InternatIonal aId agencIes, wIll help to allevIate some of the more gross InjustIces
experIenced by thIs often neglected sectIon of the populatIon. 1he "otherness" and lack of "personhood" of
persons who experIence a cognItIve ImpaIrment (IncludIng mental Illness) In socIety Is well documented In the
lIterature. 1hIs leads to dIscrImInatIng practIces both overt and covert.
1revor ParmenLer
DirecLor o CenLre or DevelopmenLal DisabiliLy SLudies
UniversiLy o Sydney
Reviewers' comments on the lnteIIectuaI DisabiIities AtIas
1he results of Atlas Global Resources for Persons wIth Intellectual DIsabIlItIes
(Atlas-ID) reveal a lack of adequate polIcy and legIslatIve response and a serIous
defIcIency of servIces and resources allocated to the care of persons wIth Intellectual
dIsabIlItIes globally. 1he sItuatIon Is especIally worrIsome In most low- and mIddle-
Income countrIes. Persons wIth Intellectual dIsabIlItIes are frequently the most
vulnerable group and, on many occasIons, are exposed to human rIghts vIolatIons
and deprIved of mInImum servIces and dIgnIty.
1hIs joInt report by the World Health OrganIzatIon and the Montreal PAHO/WHO
CollaboratIng Centre for Research and 1raInIng In Mental Health, Douglas UnIversIty
InstItute In Mental Health, Includes InformatIon from 147 countrIes,
representIng 95% of the world populatIon.
It Is hoped that thIs Atlas wIll enhance knowledge and awareness on the global and
regIonal dIsparItIes on resources and servIces for persons wIth Intellectual dIsabIlIty
at country level and wIll help In the development of polIcIes and programmes
for thIs group of persons.
Department of Mental Health and Substance Abuse
World Health OrganIzatIon
Avenue AppIa 20
1211 Geneva 27
SwItzerland
WebsIte: www.who.Int/mental_health
ISN 978 92 4 1 56350 5
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Atlas - Global Resoursesfor Persons With Intelectual Disabbilities - Eng

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