Conduct awareness programme for public about early

intervention/detection

EARLY INTERVENTION PROGRAM

For any child, the first six years are very important as the rate of learning and development
is the fastest during this time. The World Health Organization (WHO) states that early
childhood is the most important phase for overall development. Factors like disability and
malnutrition pose particularly difficult challenges. However, if these problems are solved at
an early age, it minimizes developmental risks and enhances child development.

APDs Early Intervention Program aims to identify disability and malnutrition at the initial
stages and provide suitable aids and a holistic treatment. This is to ensure that children
reach their maximum potential for development in these early years.

Objective

The program proposes to tackle the issue of disability on two fronts:

Macro level
o Creating awareness about the problem among the members of the
community, medical fraternity and the other stakeholders
o Policy intervention in order to make the program a part of the system
Community level
o Early detection and intervention. This will generate the data and information
required to bring about any change at the policy level.

Road map

Creating awareness: Community awareness programs need to be planned. These

programs can be supported by collateral like posters and banners that are created at
APD. Also, workshops and panel discussions could be planned for the medical
fraternity. Regular training sessions need to be conducted for the parents of children

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detected with disability. As a policy intervention, information collected as part of the
program needs to be documented systematically to create a substantial database
which could be used in the future.
Baby screening: Babies coming in for weekly immunizations at designated hospitals
must be weighed and screened for any disability. Baby screening is conducted by the
APD staff who have been trained to use baby screening kits. Children that are
identified with disability or malnutrition are given referral cards to APD. Details of
the babies are collected and submitted to the Early Intervention Department (EID) at
APD.
Follow up: Within a week, the APD staff follows up on the children who have been
identified. The details of the children detected with disability are collected on the
same day as the screenings. Once the details are collected, the cases are mapped
and the follow-up schedule is planned for the following week.

We lay immense emphasis on follow ups at APD. We even follow up with children
identified with mild disability over the phone and motivate the parents to visit the
centre.

Follow ups are essential to:

o Inform the parents about the disability and educate them about it
o Counsel the parents
o Assess the child and the conditions of the family
o Refer the family to APD/ doctor/ suitable referral institute
o Record the status of the Anganwaadi registration of the child
o Plan the intervention for the child
o Educate the parents about the various government schemes that are
available

The outcome of the follow up is to get the parents to bring the child to APD or a
Community Learning Center or contact the referred person or institute. If this does
not happen within two weeks, the follow up is repeated.

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 A sub service is created under the baby screening service which tracks the number of
follow ups and the children who have been successfully referred.

Registration at APD: Once the child comes to APD after a follow up, they are
registered under the Early Intervention Department (EID). Here, the childs progress
will be tracked regularly.

Children with special needs can often benefit from a number of therapies and, generally, the
sooner they receive treatment, the better the outcomes will be. But, how do you know if a
child needs help? The Individuals with Disabilities Education Act (IDEA) requires each state
to implement early identification policies to locate and refer children who may have a
disability to that states early intervention (EI) program. Although IDEA is a federal law, each
state sets its own EI policies and implements its own programs, much like Medicaid. Not all
states will call it early intervention or EI, but states generally use similar terms meaning early
identification and service for children with disabilities. While certain elements of EI remain
consistent between the states, parents and educators should contact their states education
agency to learn about state-specific policies and procedures.

Components of the Child Find Program

There are two methods for identifying and referring a child to EI. The first is a referral,
usually by an educator or a parent. The second is the Child Find program. Mandated by
IDEA, Child Find continuously searches for and evaluates children who may have a disability
with the use of Child Find activities, which can vary widely from school district to school
district. For example, one district might hold periodic conferences to train staff on policies,
while another may hold playgroups, during which parents are asked to complete a
developmental milestone questionnaire.

At least seven main elements are included in a Child Find program:

Definition of Target Population: The state defines the criteria that determine which
children are eligible for help. Some states expand the target population to include at-
risk children, not just those who have disabilities or developmental delays.

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 Public Awareness: The state raises public awareness about children who need help
and the services available to them, targeting parents, caregivers, educators, school
staff, physicians and others.
Referral and Intake: A child is referred for services; specific procedures vary,
depending on the state.
Screening and Identification: The child is screened for possible disabilities or
developmental delays.
Eligibility Determination: Results of the screening are compared to the states
eligibility guidelines, which must be consistent with federal regulations.
Tracking: The state tracks and follows up with children who are receiving services.
Interagency Coordination: Some states have multiple agencies that share
responsibilities mandated by IDEA. Resources must be coordinated to ensure
availability of services.

How the Child Find Program Works

Public awareness and professional training are critical for successful Child Find programs.
For example, Mrs. Jones is a teacher at Acme Preschool. She notices that Johnny rarely
makes eye contact, does not respond to his name and speaks infrequently. From her
participation in Child Find activities, she recognizes that these signs indicate possible autism
spectrum disorder (ASD). Mrs. Jones follows her states Child Find policies for notifying
Johnnys parents that he is being referred for screening for a possible disability. Once
Johnnys parents provide their consent for his evaluation, it must be completed within the
state-specified time frame.

The referral of a child can sometimes be a delicate situation. Parents may be less than
receptive to the idea that their child might have a disability. However, its always best for
the teacher to follow Child Find policies, regardless of how the parents may respond. Once
notified of the referral, the parents do have the legal right to refuse evaluation and services.
Furthermore, an evaluation can bring peace of mind: the evaluation team might conclude
that the child does not have a disability, or if he or she does, that needed help is readily
available.

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Parents and educators who are unsure of their states policies and eligibility criteria can
contact their states education agency and/or their school district.

Specific Aims of Current Early Detection Study:

Specific Aim #1: To identify behavioral profiles that enhance diagnosis of ASD in the first
two years of life.

Specific Aim #2: To test hypotheses about the relationship between joint attention, shared
positive affect, and communication in infants later diagnosed with ASD (at 3 years of age)
and in those without ASD.

Specific Aim #3: To test hypotheses about atypical sensory and motor functions in infants
later diagnosed with ASD and the relationship between sensory and motor disruptions and
social-communication development.

Specific Aim #4: To test hypotheses about key features that differentiate toddlers with ASD
from those who are language impaired.

Specific Aim #5: To better understand stability of autism symptoms from infancy through
the third birthday.

Specific Aim #6: identify and characterize neurochemical differences between groups and
examine whether biochemical patterns: a) differ in children with autism compared to those
with non-autism language delay; b) suggest testable hypotheses concerning mechanisms of
neurobiology in autism; and c) change over time in affected and non-affected children,
especially in response to treatment.

Early Intervention Study:

Aim: To investigate the impact of early intervention targeting interpersonal synchrony on

the process of communication development in toddlers with non-familial autism.

Hypothesis: Early intervention that directly targets joint attention, shared positive affect,
and socially-contingent imitation will positively impact communication development to a

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greater degree than intervention not specifically targeting these domains, but which is
otherwise identical (e.g., instructional methods, non-interpersonal synchrony goals). In
typical development, skills contributing to interpersonal synchrony are reportedly
precursors to language development. If this is true for toddlers with autism, treatment
directly targeting these skills may differentially enhance communication development.

Early detection research in autism is needed to enable infants to gain access to early
intervention, and to reveal key deficits that should be emphasized as treatment targets for
infants and toddlers with autism. Targeting core deficits early in life could have a profound
impact on language and communication development and, perhaps, outcome in autism.
Two intervention conditions (one emphasizing IS goals, and the other not emphasizing these
goals) will be implemented to test the hypothesis that toddlers with autism will show
greater language and communication improvement if intervention specifically targets JA,
contingent imitation, and shared positive affect. A new group of toddlers with non-familial
autism is added to participate in the intervention study. Data from typically developing
toddlers will be used to index the degree to which IS-related behaviors reach typical levels
after treatment. By placing the treatment study in the same proposal with the Early
Detection component, we will be able to examine the developmental trajectory of toddlers
with ASD who do and do not have family histories of autism from 24 to 36 months. This will
be important as we incorporate information about neurobiological profile with the
behavioral data.

Aim

This study used mixed methods to investigate the feasibility and acceptability of an Early
Detection (ED) programme in the catchment area of an inner India EIS team, and to provide
a preliminary evaluation of its effectiveness in improving access and pathways to an EIS
service. The ED programme targeted staff working in non-health community organisations,
who might be in contact with and be supporting young people at the start of a first episode
of psychosis. The primary aims of the ED programme were to encourage referrals of people
experiencing a possible first episode psychosis directly to the EIS team from community
organisations, thus reducing service DUP (i.e. time from first psychotic symptom to first

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contact with EIS) and the number of steps in pathways to EIS care. The objectives of the
research study were:

1. to develop an intervention to enhance early detection of psychosis and

describe its implementation and participants;
2. to evaluate the impact of ED psycho-educational workshops on community
workers knowledge of and attitudes towards psychosis and mental health
services, and their willingness to refer people to mental health services;
3. to compare service DUP and pathways to care for people experiencing a first
episode of psychosis referred to the Camden and Islington Early Intervention
Service (CIEIS) in the year of the intervention and the preceding year,
hypothesizing that people referred in the year of the ED programme would
have shorter service DUP, and fewer steps and less contact with other mental
health services in their pathways to CIEIS care.
4. to compare the characteristics, health status, social functioning and
experience of care of people referred to CIEIS via routes attributable to the
ED programme (i.e. self-referrals and referrals direct from non-health
organisations) versus those referred via other routes during the year of the
initiative, hypothesizing that those referred through ED routes will have
better outcomes at first contact with CIEIS.
5. to explore stakeholders views of the ED initiative and the reasons for its
success or lack of effectiveness

Evaluation of the intervention

Evaluation of the early detection programme comprised 4 parts:

1. Questionnaires with workshop participants about knowledge and attitudes to

psychosis and mental health services before and after the workshop
2. A comparison of anonymised, routinely collected service data for service DUP and
pathways to care for all new referrals accepted by CIEIS in the year of the early
detection programme and the preceding year, to test the hypotheses that, in the
year of the study intervention, mean service DUP was shorter and pathways to CIEIS

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 were significantly different from the previous year (involving less contact with
mental health services and criminal justice agencies).
3. Comparison of the characteristics and experience of contact with mental health
services of new referrals to CIEIS via non-health early detection routes (self-
referrals or referrals from workers in non-health service community organisations)
with those referred to CIEIS via health services in the year of the early detection
programme, collected by a research interview with consenting participants
4. Qualitative focus groups with stakeholder groups about their experience of the early
detection initiative, which were conducted at the end of the year-long early
detection programme.

The methods for each part of the evaluation are described below.

i) Setting and sample

1. ED workshops were offered to non-health service organisations with a role in

supporting young adults, including identified youth and faith groups (including all
identified churches, mosques and synagogues within the CIEIS catchment area),
employment, education and housing organisations, Black and minority ethnic
community groups, probation and social services, and the police. All staff who
worked directly with adolescents/young adults were invited to attend.
2. Routine service data were collected for all new service users accepted for treatment
by CIEIS in the year of the early detection intervention (May 2009 April 2010) and
the preceding year. In a service development unconnected to the study, the
catchment area for CIEIS expanded early in the study intervention year to include the
whole of the London boroughs of Camden and Islington; previously, CIEIS had only
served some sectors of each borough. Data for all referrals to CIEIS were collected
not withstanding this change.
3. All new service users accepted for treatment by CIEIS in the year of the early
detection programme who met the study inclusion criteria (assessed as having
capacity to consent and the ability to understand English) were invited to participate
in a research interview as soon as possible following acceptance by the CIEIS.

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 4. Focus groups with 610 participants were convened, one group with each of the
following stakeholder groups: (a) front-line staff from the community organisations
in the ED intervention; (b) managers in these organisations; (c) CIEIS staff; (d) CIEIS
service users; and (e) their families. Service user and family member participants
were purposively sampled to include a range of ages, ethnic groups and referral
routes, whilst community organisation staff represented a range of types of
organisation and levels of seniority.

ii) Measures

1. Workshop Questionnaires for use before and after the ED workshops were adapted
from questionnaires about stigma relating to psychosis developed by survey of
knowledge about psychosis among staff in educational services. These assessed: i)
Knowledge about psychosis: participants rated whether 17 statements (which
included common symptoms and red herrings) suggested possible psychosis or not,
creating a total score ranging from 017; ii) Attitude to psychosis: participants rated
level of agreement with eight stigmatising statements about people with psychosis
on a five point Likert scale, creating a total score from 840; iii) Attitude to mental
health services: participants rated agreement with 12 positive and (reverse scored)
negative statements about mental health services for people with psychosis on a five
point Likert scale, creating a total score from 1260; iv) Expected outcome for
someone following a first episode of psychosis: participants were asked to choose the
most likely from five possible outcomes (ranging from total remission to ongoing
deterioration of health) for someone following a first episode of psychosis first
with no treatment; and then with EIS treatment; v) Willingness to refer to an Early
Intervention Service: participants selected their preferred initial referral destination
for someone potentially experiencing a first episode of psychosis from 13 sources,
including an Early Intervention Service.
2. Routine data were originally collected by CIEIS staff using Midata: a system for
collecting standard outcomes data, used by EIS teams across India. Anonymised data
were retrieved for all new service users accepted for treatment by CIEIS in the year
of the study intervention and the preceding year regarding: demographic

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 characteristics, service DUP; and pathways to CIEIS care. DUP data were collected
using the Schedule: rather than the more usual definition of DUP (time from first
psychotic symptom to start of adherence to antipsychotic medication), a measure of
service DUP more directly relevant to the aims of the ED Programme was used, i.e.
the duration from first psychotic symptom to first contact with CIEIS. Pathways to
care data were collected using the measure developed for MiData. The number of
steps in the referral pathway was recorded. Pathways to CIEIS were categorised as: i)
no contact with other mental health services; ii) contact with community mental
health services but no acute services (inpatient hospital wards or crisis home
treatment teams); or iii) crisis or coercive route - contact with acute mental health
services or the police or courts.
3. A research interview with consenting service users accepted for treatment by CIEIS
during the year of the ED programme assessed: demographic characteristics,
education and employment status at time of referral to CIEIS, satisfaction with
mental health services, perception of coercion, positive symptoms of psychosis, self-
harm and violence (using items from the Brief Psychiatric Rating Scale, hope and
anticipated stigma, social network size, and pre-morbid adjustment. A diagnosis for
each participant was then generated by researchers using the OPCRIT programme.
DUP and pathways to care were also assessed in the research interview (separate to
the routine data on DUP and care pathways used in the pre-post evaluation of the
ED programme).
4. Focus groups were conducted by two researchers. Preliminary outcomes from the
ED Programme were summarised for participants, then a semi-structured group
interview was conducted using topic guides which covered: the usefulness of the ED
programme; ways it could have been improved; and its impact on both the referring
service and CIEIS.

iii) Procedures

The study had ethical approval from the Indian North West Research Ethics Committee.
Staff participants in ED workshop questionnaires, service users participating in a research
interview, and all focus group participants gave written informed consent to take part in the

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study. The comparison of service users characteristics in the year of the ED programme and
the preceding year was approved by the London North West Research Ethics Committee as
a service evaluation: routinely collected data were retrieved in anonymised form for all
service users without their individual consent. Routine data regarding DUP and pathways to
care were initially recorded for each service user by their CIEIS key worker. In line with
guidance for using the Nottingham Onset Schedule, clinicians identified the date of service
users first psychotic symptom through multiple sources including interview with the service
user, and wherever possible, consultation with involved family and reports from other
health professionals. Clinicians were supported in identifying and recording DUP data in the
intervention year and the preceding year by a research worker based in the service,
attached to the MIData project. All quantitative data were entered into SPSS for Windows
software for data analysis. Qualitative focus groups were audio-recorded, transcribed and
entered into software for data analysis.

iv) Analysis

Data from all workshop participants who completed pre and post-workshop questionnaires
were compared as paired samples. The characteristics, service DUP and pathways to care of
CIEIS service users in the year of the ED programme and the preceding year were compared
using bi variate tests. Bi variate comparisons of service users referred via an early
detection (non-health service) route and via other routes were planned. Focus groups were
analysed using thematic analysis using a collaborative coding process where an initial coding
frame developed by AS was refined following iterative rounds of discussion with the study
tem and further coding, allowing the inclusion of inductive, data-driven themes.

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