I.

Children's Extensive Support

Children’s Extensive Support (CES) – is a program that provides Medicaid-funded services and
supports to children with developmental disabilities or delays who have the most intensive
behavioral and/or medical needs and are at high risk of out-of-home placement. Eligible children
demonstrate a behavior or have a medical condition that requires direct human intervention,
more intense than a verbal reminder, re-direction or brief observation of medical status, at least
once every two hours during the day and on a weekly average of once every three hours during
the night. The behavior or medical condition must be considered beyond what is typically age
appropriate and be due to one or more of the following conditions:

♦ A significant pattern of self-endangering behavior(s) or medical condition which, without

intervention will result in a life threatening condition/situation.
♦ A significant pattern of serious aggressive behaviors toward self, others or property.
♦ Constant vocalizations (on average of fifteen (15) minutes of each waking hour), such as
screaming, crying, laughing, or verbal.

RECEIVING SERVICES

1. Betty -- Denver County

My son, Eli, started screaming in agony when he was two weeks old. He never slept. He passed
out in twenty-minute increments up to about 4 hours a day. When Eli was two when he was
given the behavioral diagnosis of autism. When he was three, he began to injure himself by
slamming his head into hard objects hundreds of times a day. By the time he was four, he added
ripping the flesh off his hands and wrists with his teeth, and had to wear a helmet with a hockey-
goalie like face mask and was often confined to a straight jacket to prevent him from killing
himself and injuring me, as he had taken to biting me and slamming his head into my face given
the opportunity. Our house was kept perpetually dark and I had no contact with friends, family or
the world outside my hellish life.

When Eli was four I joined the Colorado Interagency Coordinating Council, the Advisory
Council to the Lead Agency for Colorado's early intervention program, as one of their six parent
representatives. I hadn't had a full night's sleep for 4 years and I had black eyes and bruises.

My fellow council members included representatives from the Colorado Department of Human
Services and HCPF who were appalled to discover that children with behavioral diagnoses could
be as physically demanding on a parent as a child on life supports.

The Departments of State determined that a Medicaid Waiver would be created to serve
Colorado's children at risk for institutional level of care that qualified based on behavioral needs.

At age 6, Eli was one of the first 18 children in the state to receive services through the
Children's Extensive Support Waiver.

The services through this waiver changed our lives and I believe, literally, saved our lives.
Not only could I access the care Eli needed, I could also access sufficient respite care for him to
take care of myself.

Accessing a Medicaid Waiver provides access to the Medicaid State plan, which, in turn,
provides benefits for chronic care needs, such as Home Health services, as opposed to the limited
acute care services via private health insurance. Medicaid does not limit medically necessary
services.

Through the CES Waiver, Eli received home health services, medical services, therapy services
and most importantly, a behavior plan that all together, over time, allowed discovery of the
medical problems causing him to be in agony and solutions to his dramatic self injury.

Because of the CES Waiver, Eli improved physically and developed self-management skills so
that now he infrequently self-injures and typically sleeps through the night. He has sufficient
language to get his needs met and has some pleasant emerging social skills.

The CES Waiver gave Eli the supports he needed to, over time, develop admirable skills of
independent living, such as bathing, personal hygiene, preparing his own food and cleaning up,
helping with laundry and doing household chores.

Eli’s recovery led to his ability to do academics, including reading, writing and math. This past
year, he took an Algebra class and was so successful that he is being promoted to a higher level
program in high school.

Eli successfully completed two job programs in high school last year and will most likely be able
to contribute to his own financial well being through supported employment as an adult.

As for me, my friends told me it was as if I disappeared for six years and now I was back.

And as a result of Eli’s recovery, I was able to return to the workforce and even have a
boyfriend!

I only wish my gut-wrenching experience were exceptional. I am speaking on behalf of hundreds

of people who have received help and thousands that haven’t. It is unconscionable for us to tell
people in grave circumstances that we do not have a safety net in Colorado; we have wait lists.

There are children and families whose tragic and horrible lives could be changed to lives of
quality and productivity with the CES Waiver. It is heartbreaking to know they are waiting for
Colorado to fix the wait list and encouraging that we are here today to end the despair and bring
hope to our most vulnerable Colorado citizens.

WAITING FOR SERVICES

1. Todd -- Jefferson County

Many have seen my daughter Hannah on posters, magazine ads and on billboards. Hannah, who
has Down syndrome states: I’m different; I want a small wedding. Many know that Hannah is the
reason I’ve now spent nearly thirty years in the disability field myself. But many probably don’t
know about one of my other daughters, LiLi.

Adopted from China almost four years ago, LiLi recently began to show us with her behavior
and mental health challenges just how horrific her first nine years in an institution had been—an
orphanage comprised mostly of unwanted, disabled children—the pariahs of their society. Not
only was she sexually victimized by older children, she was second to the bottom on the social
pecking order, picked on by the other orphans, often going to bed cold, hungry and afraid of
what might happen next.

Now at home in her new country and diagnosed with a cognitive developmental disability to go
along with her significant speech issues caused by cleft lip and palate, she has been placed on the
waiting list for the Children’s Extensive Support waiver even though the mental health crisis
occurring at the time of her application was enough to cause placement in the Children’s
Hospital Neuro-Psych Unit for more than five weeks last winter--at a cost of more than $27,000.

The process of applying for the CES waiver was staggering, even for someone like me with my
experience and with the ability to take time away from my job in order to jump through all the
hoops necessary. Single point of entry? Ha! First, I needed a denial from Social Security. Why?
Because Medicaid requires that and developmental disabilities services are part of Medicaid. But
to get that denial I needed to fill out an on-line application that required three hours…only to be
told later on the phone that all I needed to do was come into the office. Of course, it was another
person from Social Security on the phone initially who told me to fill out the application on-line.

With the Social Security denial letter in hand, I went directly to the community-centered board
where I received the waiver application. Most of the application seemed irrelevant and aimed at
the whole family, yet I was instructed to fill it out only for my daughter as if she were her own
household. It took a number of days to locate and organize the documents necessary to complete
the application. I sent the application, plus documentation, back to the community-centered
board, the single entry point. A few days later a person from the community centered board
called to say I needed to take Part One of the application to the county department of human
services because that’s where the “Medicaid” part is approved. I asked if it could be faxed but the
decision was made to hand deliver it for security purposes. So I drove to the community centered
board offices, picked up Part One and drove to the county department of human service office
where I dropped it off. I asked that it be time-stamped as received.

The community-centered board informed a month or so later I that LiLi’s application had been
approved and that my daughter was now officially on the Waiting List, with an approximate
three-year wait time. About two weeks later, I received an official letter from the county saying it
had never received Part One of the application and that if it was not received within seven days,
the application would be rejected and we would have to start from the beginning.

When I contacted the community centered board, the resource coordinator said my daughter was
in the computer system already so the letter must be in error. I asked her if she knew someone in
the county office that could verify that. She said she would contact them. I’ve been told to keep
all the records together because by the time my daughter comes off the Waiting List and is
enrolled in the CES program, enough time will have elapsed that we will have to prove her
“eligibility” all over again, with the same burdensome application process. As if people with
developmental disabilities might become “cured” during the interim while waiting.

Just amazing. Meanwhile, as a family we wait, hoping the next crisis point won’t require the
same kind of expensive and extensive hospitalization that the last one did.

2. Stephanie – Denver County

I have a child that is diagnosed with Autism, who is receiving Family Support Services through
Denver Options, while waiting on the statewide list for CES Waiver Services.

As you may notice from my email source, I work for the CCB, Developmental Pathways as a
Resource Coordinator. My son began developing behavioral problems around 1 year old and it
got so out of control right before his 3rd birthday that I was forced to have to leave my job. The
daycare centers would not keep him and the Tribunal Court ruled in my favor to be able to
receive Unemployment due to this. My children’s father was incarcerated in the DOC for felony
DUI and I had not support.

I decided to move to Louisiana where my mother and sister lived for more support. After a few
months, they decided that it was too much to handle. So I stuck it out in Louisiana for 2.5 years
with almost no support at all, other than from my son’s Psychiatrist, Pediatrician and
Psychologist. His Psychiatrist now resides here in CO and works for Children’s Hospital (He’s
originally from here). He has seen my son a couple of times at Children’s, but is not his primary
Psychiatrist here. He worked with my son in Louisiana through Tulane’s Early Child Supports
and Services Program-Infant/Toddler Mental Health Program for 0-5 years old.

My son’s Psychologist kept him on after he aged out as courtesy patient until we moved in June
2006, as she didn’t want him to go without therapy. A Psychiatrist in AZ was treating my son
before we moved and his paternal grandfather was his Pediatrician in AZ. Both diagnosed him
and treated him for ADHD. The same happened when the Director of Pediatrics first saw him at
LSU Medical Center in Lafayette, LA, until he finally referred him to the Mental Health
Program.

It took them a couple of years before they really had a handle on what the problem was. It’s been
a struggle for years to deal with the behaviors, disappointments and sacrifices that my daughter
and I both had had to experience. Things are a little better since he’s getting older and he spent 7
weeks in the Neuro-Psych Unit at Children’s last fall.

I try to encourage as much independence and provide a peaceful atmosphere for my son, to make
my daughter’s life and mine easier. When you do not have help, that is the one hope you can
have, is to insist that he will advance more and life will be better for all.
II. Family Support Services Program

Family Support Services Program (FSSP) – is intended to support families who have children
with developmental disabilities or delays with costs that are beyond those normally experienced
by other families. The primary purpose of the FSSP is to support children with developmental
disabilities or delays remaining within their own nurturing family setting and prevent out-of-
home placements.

RECEIVING SERVICES

1. Leslie – Mesa County

Leslie’s son Charlie is currently in FSS and will be turning 18 in April 08.

2. Jude -- Mesa County

Justin is currently in FSS but he will be out of school in the 3 semesters and will be in need of
Community Employment support and she is also looking at a comp slot in the next few years.

3. Jeanette – Denver County

Family member with down syndrome

My son receives family support funds in order to enable respite, summer program and additional
therapy.

I would be able to do a presentation (pp) showing how much family support through the CCB
has helped my son and our family.

4. Anne – Arapahoe County

I would present a PowerPoint presentation of my son's situation and how funding for these
therapies could give him a future again. Drew is one of the hundreds of children in this state who
have mid range Autism and are often not qualified to receive any money from the current waiver
system because he is either not severe enough or has "aged out" of programs available. By the
time we got any answers, he was too old biologically. We need funding now so that he can
continue the early intervention treatments we have mortgaged our house to the rafters in order to
afford thus far. I can make this fit the 5 minute limitation with me saying a brief introduction. I
would very much like to be one of the families you choose to testify, please. It may be my only
chance to finally be heard.

5. Jane – Boulder County

Child is in Family Support.

6. Jim – Arkansas Valley

Son Ethan receiving Family Support.

7. Deb – Routt County

Thank goodness for Family Support! It helps with our respite and other extraordinary expenses
that help us get by. Gary’s needs are not extensive, but without family support I couldn’t work
even part-time. Gary will be graduating soon though and as we look forward to this monumental
step in his life from becoming a teenager to a man – we can help but fear what will happen
without long term support and the loss of family support.

WAITING FOR SERVICES

1. Panon – Arapahoe County

I, Panon am in need of great help I have a daughter who has been diagnosed with autism with
mood disorder and psychotic features. I, have suffered great loss of jobs, my health is no longer
the best at 36 years of age. I have tried numerous agencies to get help for her and no one has
funds or the waiting list is just too long. I can not take her too many places due abruptions and
outbursts she could not attend school properly due to this. I, am very exhausted with this and I
am trying through social services to get her placed and been denied twice. We had numerous
police visits due to this I have tried again through social services again to get respite care or get
her placed I have already lost it and is severely stressed out that there is no place to get help. We
are aggressive toward each other and she has become violent and no one is listening. I also will
look into foster care but she still will need help before someone takes advantage of her. You can
not take her places because it is fight to get her inside the house out of harm so I don’t take her. It
is very damaging to me, her and my son relationship. I, am very, very, very tired of not getting
any assistance unless I neglect or abuse her. This is very sad and exhausting and I don’t want to
hurt her but me a lot of rage.

III. Supported Living Services

Supported Living Services (Adults) – are used to supplement already available supports for
adults who either can live independently with limited supports or, if you need extensive support,
are principally supported from other sources, such as your family.
Supported Living Services (SLS) provide a variety of services, such as personal care (like eating,
bathing and dressing) or homemaking needs, employment or other day type services, accessing
his or her community, help with decision-making, assistive technology, home modification,
professional therapies, transportation, and twenty-four emergency assistance. Supported Living
Services are not intended to meet all needs. Service needs and the level of support are prioritized
within your overall Individualized Plan (IP).

You are responsible for your living arrangements which can include living with family or in your
own place. Up to three persons receiving services can live together. You or your family member
cannot require 24-hour supervision paid for only by SLS.
RECEIVING SERVICES

1. Christy – Arapahoe County

Type of service and whether you are receiving it or waiting for it: Lauren is receiving SLS (since
18) and CDAS (3 years), she has become available for a comprehensive slot 2 times in 4 years.
The type of services she wishes and what have been offered have been significantly different.
Although we have completed plans, the family has driven the services and been creative with
how to manage Lauren services. This also could be shared with the commission to shed light on
some of the crazy making trying to get multiple systems to share funding, i.e. Vocational Rehab,
HCPF, & DD. Each system requires the same staff to clear their security, complete training, get
fingerprints and do background checks even if they are working for only one individual! The
duplication and cost is ridiculous!

I would wish to share a cost comparison on what an individual with high needs costs the state of
CO under a host or group home model, and the same scenario in a home of his/her own or in a
shared residence.

2. Joe -- Boulder

As a parent I was heavily involved in advocacy for my son to make it through the school system
as normally as possible, he does not read or write and his most noticeable disability is
unintelligible speech to those that don't know him. He was one of the few multi-intensive
students to be included in the majority of his classes throughout High School. I would not allow
him to ride the special bus to school, enter the school through the special entrance and then spend
the major portion of his day in the special ed room. Everyone said with his needs this is what to
do, I said, sorry but he wants to be in the general population.

He had a very successful four years of high school and we can't go anyplace in the community
without someone saying hi to Bryce, it's fantastic. If he were in the special room, he would not
have been exposed to so many people that are now so important in his life. Today, he works two
different jobs, at a restaurant Tuesdays and Thursdays, and Monday, Wed. and Friday delivering
mail in a hospital. Almost everyone at the hospital knows who Bryce is. Both jobs are volunteer.

I developed the jobs, I manage his SLS, I manage the hiring and training of his job coaches, I do
his daily personal hygiene, I facilitate all community involvement. The rub is I can't work a full
time position for an employer. I have no health insurance, I am 57, I became a special ed teacher
but only lasted three years, while my son was still in school. Now that he is out of the daily 8am
til 3pm entitlement routine I have to sacrifice my financial contribution to the tax base and my
son has to rely on SLS funding to pay the people that supervise him in the community. That is
only a max of 3 or 4 hours a day. My son can not be left home alone. I have no idea what to plan
for the future when I will not be able to manage my son’s life. I have not seen, maybe it exists,
but I have not seen within the systems anyone doing the kinds of things for my son as I have
done. I am not a wealthy person, I work three different part time/ temporary jobs, my wife works
for the school sys tem by day she and my 18 year old have health insurance, and she also works
nights and weekends at a department store.
In contrast, my 18-year-old will be going to a very good private college out east and he earned
the privilege with his good academics. He has every door open to him it's unbelievable that life
can be that good. When I think about the future for Bryce, I usually cry. Cause I have no idea, the
services I have seen only operate on maintaining minimal health and safety standards, people
with developmental disabilities are human beings and shouldn't be forced to live in a group home
with people they can't choose to be with, or be hauled around in a van with a bunch of other
people to go to the bowling alley once a week. I am at a loss about a plan for the future. There is
a huge problem looming and it needs to be addressed.

3. Edward -- Boulder County

Presentation: If selected, I would probably present still pictures and briefing charts in Powerpoint
format. This would explain the nature of Jodi's disabilities; show what a typical day in Jodi's life
is like; how many hours of assistance we have on weekdays and weekends; what kinds of things
outside care providers do; and what kinds of things we have to do ourselves. I would attempt to
show how this has affected our careers, and how we have tried to compensate.

I would be interested in testifying at the first meeting for my son Scott.

4. JoLyn – Jefferson County

Colorado has been my home for the past 40 years. In Lakewood I raised my children Lisa, Julie
and David -- all adults now and still living in Colorado. My daughters both work in the school
system one is a teacher and the other is a speech pathologist. My son David volunteers at Saint
Anthony’s Central as am ambassador. I am sharing with you about our family because of David
who was born a twin and prematurely. His brother died of a brain hemorrhage the same day he
was born but David lived to be later diagnosed with cerebral palsy. David grew up in his family
home which changed from a two parent home to a single parent home when he was 4 years old.
As an adult David’s family is still involved in his life but his primary person that helps him is me
his mother. He does receive Supported Living Services (SLS) through Developmental
Disabilities Resource Center (DDRC). What does that mean for David? Weekly he receives 12
hours of support from his mentor who helps him with grocery shopping, appointments, in home
assistance with household chores and last but not lease physical exercise to maintain his skills.
Other services provided by SLS are payment for eye glasses, dental check up twice a year and
house cleaning service which comes in every other week. David is now 32 and I am 63.
Everyday I go to David’s on my way to work and make sure he has in place what he needs for
the day. I still prepare his meals as he only does microwave cooking. On Monday, Wednesday
and Friday I give David rides to and from work. It shortens his day but lengthens mine. Tuesday
and Thursday is when he sees his mentor. On weekends I am also available as needed. Once a
year I go out of town for 2 weeks and during that time it take 3 people to replace me (my two
daughters and a friend). This is our routine this is what we do day in and day out. I have my
regular care giving duties and then I am the backup when needed. On occasion when David gets
sick in the middle of the night it is me driving over to assist him or take him to the emergency
room. Please understand David has a good life and that is what I want for him. He also has
developed friends in the community that he enjoys swimming with as well as other activities.
The Supported Living Services program is a good fit for him but I wonder what will happen
when I am no longer able to do what I am currently doing. It is a given that his life will go into
crisis when I am no longer able to assist him. His sisters, they will provide over site. I believe
there are things that I do that they will pick up and do but I don’t believe they will give it the
amount of time that I do. After all they have their own lives. My girls tell me I need to slow
down and remind me that I can’t keep up this pace. A gentle reminder came from Lisa when she
said, “Mom, I hope you have a long healthy life because I know I can’t do what you do when
you are no longer able.” I understand that, in fact, I don’t expect her to do what I do. Still there is
David who is part of his family and community and that is where he belongs.

5. Toni -- Jefferson County

We benefit in many ways through receiving SLS. Scott is unable to do his own personal care so I
perform all of that care everyday. It takes about 45 minutes every morning. Scott has toilet
training issues so we have benefited from receiving a solid surface floor in his room that allows
me to keep his floor clean.

Through SLS we receive house cleaning services for 1 hour every 2 weeks. Because of his
toileting issues, I have to wash clothing and bedding everyday and clean up messes and the
bathroom everyday. The cleaning service helps to get the cleaning caught up and allows me a day
to get the laundry caught up and tend to things that don't get done because of time constraints.

We have also received carpet cleaning to stay on top of the health issues created by Scott's toilet
issues. I'm hoping in the future to change out the rest of the carpet in our house so that we don't
have to have that continuing expense and can eliminate the health issues his toilet issues cause.

All of these services are expenses that are over and above the needs of regular families and very
helpful in allowing us to maintain a clean, safe environment for Scott.

Scott is also eligible for a day program at Bruno Center. He is slowly acclimating himself to the
environment at Bruno where he does piece work like putting stickers in bags or pushing
cardboard pizza rounds out and stacking them. He has had adjustment problems but the staff has
been supportive of him and I feel he is beginning to enjoy and look forward to his work days. He
really benefits having a schedule and having tasks to perform. I feel it is very important to him to
feel like he has work he can do, a sense of accomplishment and something to look forward to
doing. He was initially apprehensive but now he also likes riding the DDRC transportation to
work. He has just started some training to use a computer at Bruno and we are really excited to
see how he does.

The majority of Scott's funds are for community access and hourly supervision. These hours
have been problematic to get providers for and I hope that will get better in the future perhaps
through efforts in this legislation but Scott really enjoys these days. He especially enjoys riding
in the car with the providers, walking in the park, going to the rec center and swimming and
getting fast food. He sleeps better and his mood is better when he has regular, scheduled access
and supervision hours. Scott can't and wouldn't be able to go out and do these activities without
the support of the SLS program. I believe he enjoys and benefits from time away from Mom, just
like any young adult. I also appreciate the time. I have 3 or 4 hours to get my haircut, go to the
grocery store, go to the Dr. or dentist, take a bath by myself or take a nap.

I was recently very ill and had to be hospitalized with an infection and complications. It was a
lifesaver to have someone to be with Scott a few hours so I could go to my Dr. appts and have
the hours to sleep and recover fully.

SL Services are in my opinion very important to families in Colorado. If properly used, I think
SLS can be the most cost effective and humane way to provide services to individuals while
keeping them in their family home and community.

6. Wendy – Arapahoe County

Kristin is a 22 year old young lady who loves to be with people and functions best with a
structured routine. With her SLS funding she goes to a day program (DP’s East Pathways)
Monday, Wednesday, and Friday from 9am to 3pm. Each Monday she bowls and does some type
of exercise program, each Friday she swims laps and does a ladies glamour time where they do
her nails, and Wednesdays activities change from week to week. Also, since Kristin loves doing
group activities out in the community, on Tuesday and Thursday SLS funds a social group for
people with disabilities. The hours of this program are 3:30pm-8pm, and it is provided by
Ability Specialist. The third activity that SLS funds is Praying Hands Ranch which is a Saturday
1 hour horseback riding session that helps Kristin with her balance, self-esteem, and social skills.

Presentation: I would bring Kristin with me to the presentation. I could take pictures of her
doing her activities but I do not know how to put this into a power point or other presentation
type. I could make a monthly calendar for day program and Ability Specialist to show what she
does on those days. I would talk about how Kristin is always learning new functional skills, for
instance, the day program has recently taught her how to connect her seat belt (up until this point
I have always connected it).

7. Kristi – Mesa County

Son Anthony Anderson moved out on his own but is currently living at home again. He needs
ongoing Community Employment support also. Anthony is currently enrolled the State SLS
waiver and is also on the comp wait list.

WAITING FOR SERVICES

1. Kit – Mesa County

Son Andrew has just graduated from high school and will be seeking Community Employment
support and possible support to eventually emancipate.

2. Nevada – Park County

My name is Nevada and I have a son, Kristoffer, age 22, who has been on TRE's waiting list for
services since he was 14. I would very much like to speak to this committee for the 5 allotted
minutes addressing how services would help us. While I hesitate to represent all of Park county's
families, I do feel both comfortable and confident speaking for those of us in the North Fork
headwaters of NE Park county. No doubt you are aware that those of us in the Bailey area are far
more connected to the Denver metro area from both an access and "cultural" perspective than we
are to the rest of the county or the Springs. This represents additional logistic problem seven
when an individual actually reaches the top of the notorious list. While I understand that this may
not be a pertinent topic for the education of the committee, it does create the usual roadblocks to
our meeting to put together a clear concise piece.

3. Ann – Arapahoe County

I am fighting to be found eligible for SLS services.

I need help:
I need someone to take me places like shopping and help me manage my money.
I need somebody to come to my apartment and help me, and occasionally give me a haircut.
Somebody to come and walk with me.

Thank you for letting me help out in this.

4. Jason – Arapahoe County

Jason has cornelia de lange syndrome , learning disabled.

Jason needs these long-term services to be able to live more independently and live on his own.
We are not sure at this time what job he would be able to maintain and these additional supports
would benefit him in the future.

IV. Comprehensive Services

Comprehensive Services (Adults) - provide 24-hour residential care, employment and other day
type services and transportation. Comprehensive Services is an all-inclusive program that is
designed to ensure that all identified needs in your Individualized Plan (IP) are met. You cannot
be living with your family if you receive Comprehensive Services.

The service provider is responsible for living arrangements, which range from host homes
settings with 1-2 persons, to individualized setting of 1-3 persons, up to group settings of 4-8
persons. You may be responsible to pay for a portion of the cost depending on your monthly
income.

RECEIVING SERVICES

1. Shannon -- Weld County

Shannon has lived the worst and best of both worlds: a life of great hardship waiting for services
and a life of great joy once she was able to obtain services. Shannon is a success story of how
comprehensive services can be provided to help a person live the best life possible. Shannon’s
support allows for her to be a more proactive self-advocate. Shannon would be honored to
present her story and life to the interim committee.

2. Jerone – Adams County

Jerone moved in with his Aunt when his mother died (2002), she provided care for him and he
provided care for her MS. Both are disabled and only Jerone working they were not able to keep
their home. We were able to obtain an emergency placement to keep him off the street. Jerone
reports he is doing much better in services, he is independent in the community much more and
feels he receives much better support on the job. He reports he “eats great Mexican food now”
Does not have to worry about his money, food and bills anymore. He loves living with the Host
family and stated “It’s good for people with disabilities to have choices…I would hate to live in
an institution.”

Jerone is an articulate young man with his own opinions. He would be relatively easy to
understand and able to express how his disability affects him. He knows when he is being taken
advantage of and will advocate on his own behalf. He has a good understanding of how services
work.

3. Diane – Larimer County

My daughter (31, quadriplegic, with high medical needs) has been served for seven years in her
own home as a host home. This setting was approved by a visit from Jay Kaufman, and later
grandfathered in when restructuring occurred. After we blew the whistle on fraudulent charges
made by my daughter’s service agency, her setting was then “un-grandfathered.” At first, her
location was the sticking point, then it was the rule about the host home provider being in control
of the house (i.e.: holding the lease) but the HHP always held the lease. We don’t understand the
distinction at this point.

The new agency, which wants to pick up my daughter’s service, had their PCA proposal for
another individual also fleeing the unethical service agency, rejected by the CCB. So it looks like
both host home and PCA options are unattainable. Micro-boards appear to be the only
alternative. Large, complicated hassle involving a business start-up and the clock is ticking on
being bounced out of the system. My daughter is still quadriplegic, she has done nothing but
have fraudulent charges made in her name, but it is her residential setting is that is being gutted.

Then (!) we learn of a simple document that, if signed by guardians, will allow for the in-own-
home hosted situation. This information could have saved a month of frenzy if it had been shared
when our situation was deemed illegal. But no one said anything. Both the division and CCB
knew of the situation but said nothing about this (Hail Mary) document. I no longer feel that
maintenance of service is a primary focus with these entities. It has become compliance, even if
it is used as a punishing consequence for an eligible individual.

An intake person said that my daughter would be at the top of the list for re-instatement, but
what is the point of all that contradiction? It is a waste of state resources to un-approve, then re-
approve an individual, not to mention the chaos it creates without need.
4. Beth – Arapahoe County

My name is Beth and my daughter is a beautiful 28 year old living on her own in an apartment
and working full time. What sets her apart from others is that she has developmental disabilities.
Academically speaking, she can read at about a first grade level, can not make change for a
dollar, does not drive a car, and yet lives a productive, happy life. She works full time at
Safeway, and lives by herself in an apartment! This could not have happened without the support
from comprehensive services that she receives. She was one of the lucky ones. She was on the
waiting list, and not slated to be picked up for at least a couple of years when a slot came open
for an apartment. After going down the list of clients who were looking for other living
opportunities, or due to other circumstances had to decline, Jennifer's name came up. She and the
family accepted and three years later the success story continues. I would be honored to share
that story with anyone, but especially the people who can make a difference for others with
disabilities. I would be happy to bring Jennifer to be a part of this success story along with a
power point presentation that would show her apartment, place of employment, and some of the
people who help to make this a great life for Jennifer. Below is the information you requested,
please feel free to call or e-mail if you have any questions. Please thank Rep. Garcia for
recognizing that our children are a very important part of society, and they too should have the
opportunity to become active members of that society.

5. Diana -- Arapahoe County

Daughter is receiving SLS but is dually diagnosed and has tried comp services – was waiting for
5 years and just got services within the last year.

6. John – Arkansas Valley

Currently receiving comprehensive services.

7. Francie and Bill – Arkansas Valley

Currently receiving Comprehensive Services for son.

8. Dana – Arapahoe County

Dana is a 46 year old female who requires 24/7 supervision due to her disorders especially the
PICA which is a tendency to eat non food items. In the past she has had 3 surgeries to remove
things from her body that she has swallowed and gotten stuck (one was chicken bones in her
throat and the other was a insole of a shoe stuck in her intestine). Currently, Dana lives with a
wonderful host home provider who watches over her like a hawk, and thankfully no surgeries
have been needed under her care. Dana attends Carmel Community day program 4 days a week.
She obtains psychiatric services, general doctor visits, dental services, and adaptive technology
services all funded by Developmental Pathways. She also takes about 8 different medications
each day due to her disabilities and syndromes, and her host home provider must supervise this.
Dana has no form of communication---she doesn’t talk at all or write. A person will know if
Dana likes something because she will get a big smile and clap her hands together. She likes
food, swimming, looking at herself in a mirror, and listening to music.

Dana is pretty involved, so I would like to bring both her and her host home provider to the
presentation. I could take pictures of her to put into a presentation. I could also talk about that at
one time she lived in an institution, then she moved into a group home (both these were in
California), and now is with a host home provider which definitely provides more of a ‘home’
and ‘family’ environment.

WAITING FOR SERVICES

1. Alyssa – Weld County

Is currently residing in an assisting living program and is getting regular support from the Arc
advocate and from the adult protection caseworker. Because of mal-treatment, Alyssa was forced
to leave her family home. Because services were not available she was transitioned into assisted
living. While in assisted living she was victimized by a predatory male and ended up in a
womens shelter. We are currently searching for the right mix of services. She is on the wait list
for both comprehensive and SLS. She is her own guardian and has given verbal consent for her
case to be reviewed. This is an individual that with the right types of supports will be successful.
Currently because of lack of resources she is believed to be a risk.

2. Angela -- Adams County

Two years ago, this family relocated Paul and his mother from California to Colorado. Angela’s
82 year old mother-in-law was and continues to experience some major health issues thus the
family had determined that it was no longer safe for the two of them to live independently in an
area without family nearby to provide oversight and assistance. Thus, Angela and her husband
relocated them to Adams County, Colorado and they now live in the house next door to the
Richards to assure they could provide assistance as needed (although we both work full-time and
have two small children).

Paul is an autistic 40-year man who had prior to moving here worked in a sheltered workshop 5
days/week, and was productive and happy. Paul has been wait listed for 18 months now and was
recently informed that Paul is #160 on the list for day services. When the family initially
contacted the Community Centered Board, they were told the wait list for day services was 3-5
years. After 18 months, they were recently told that they could only serve approx. 2 new people a
month. At this rate, it will be over 6 more years before Paul can get services. Paul has a lot of
great potential and enjoys being productive; however he now spends most of his days watching
TV without any services. While the family feel’s he is safer here in Colorado where they can
keep an eye on him and his 82-year-old mother, Paul has suffered from lack of stimulation and
companionship.

3. Rachel -- Jefferson County

My son was just put on the adult wait list when he was 14. I put him on the list for
comprehensive services to able to access it when he turns 18. I have concerns as a single parent
who has just recovered from her fourth time with breast cancer. I wonder where Jeremiah will
live once I pass. I would like to plan for his future (when I’ve passed) as I have with my other
children. I’m not sure that Jeremiah or I will live the 80 years that it takes to get to the top of the
adult wait list. I have struggled to get and keep the services he needs through the Children’s
Extensive Support Waiver. Without having this waiver I‘ve been told he would be in an out of
home placement due to mental health issues and behaviors. I would think it would be a lot more
costly for him to be hospitalized than putting supports in the home. There are times that I’m
scratched, bruised and I need a little break from my child so that I can re-group. But it is not
something you can get on a regular basis. There are times when I cry because of how many times
I have to leave work, or how I have pain in my body from constantly lifting an 80-lb. child. Or
that I need to go to the grocery store but I can’t take him because of his screaming (we’ve been
asked to leave the store). I’m getting older my body is wearing out. It worries me constantly that
I won’t have the services that are needed for him so that I can continue to work.

4. Erin – Weld County

We are in the process of transitioning Erin to a more secure environment. Erin is his own
guardian and has given verbal consent for his case to be reviewed. Erin is currently residing in
rural Weld County. Has had extensive childhood abuse and is in need of treatment services. Was
found ineligible for DD services and we are considering appeals because of Erin’s need for
comprehensive services. Is a case that will most likely fall between the cracks unless we
maximize all efforts.

5. Paul – Weld County

Currently receiving services from Wheat Ridge Regional Center and is on the waiting list for
comprehensive services within the community. Parents are legal guardians and have given
verbal permission for Paul’s case to be reviewed. Paul was receiving SLS as well as educational
services through Ft. Lupton High when he became assaultive on numerous occasions. Was put
on the wait list for comprehensive services. Was hospitalized on numerous occasions. There
were no appropriate comp services in the community to meet his behavioral needs. The
numerous psychiatric placements resulted in him returning home and continuing the cycle of
abuse towards his parents. Much work was done to find an appropriate community placement
but to no avail. Consequently regional center placement was sought. This process took several
months and he was finally placed in Grand Junction regional center approx. 1 year ago and then
was transitioned closer to home into the Wheatridge regional center. We are currently attempting
to stabilize Paul’s behaviors while assessing his needs if placed into the community. We were
hoping to serve Paul within the community but the resources were not available and Paul reached
a crisis point to where Regional Center placement was the only option. Hospital/psychiatric
services were totally inept in this case and the psych hospital refusal to assist placed both Paul
and his family at risk of eminent harm. The parents are hoping to have a chance to tell their story
in an effort to effect more services for other families that find themselves in similar crisis
situations.
V. UNKNOWN SERVICE TYPE OR COUNTY

1. Brenda – Pueblo County – UNKNOWN SERVICE RECEIVING OR WAITING FOR

Brenda as a parent of an individual receiving services from our agency. She is willing to speak
with the committee.

From Mike Atlas-Acuna

Colorado Bluesky Enterprises, Inc.

2. Kyle – Weld County -- UNKNOWN SERVICE RECEIVING OR WAITING FOR

Parents are legal guardians and have given verbal permission for Kyle’s case to be reviewed.
Was referred to Voc. Rehab and was denied their services due to lack of volunteer experience.
Parents state that they are confused with what waiting lists he is on. Notification/communication
regarding the waiting lists appears to be an issue in this case. While attempting to seek job
support parents were informed that because of shrinking resources that “the parents would need
to be the support staff for Kyle”. Because of monetary constraints and the increasing costs of
providing services the family are concerned they will not be able to continue much longer. They
are asking the question “who is ultimately responsible for providing these types of services?”

3. Jane – UNKNOWN COUNTY

Child is in Family Support.

From Jeremy Schupbach

Alliance

4. ANONYMOUS – NEEDING CES SERVICES -- UNKNOWN SERVICE AREA

TO WHOM IT MAY CONCERN/WHOEVER CAN HELP

I am writing this letter to outline how much of a crisis my life is right now.
I have 2 children with autism. One will be 5 in a few months and the other one is 3.
Both of them have sleep issues but the younger has insomnia. I am on day 5 of no sleep. It takes
anywhere from 1-3 hours to put her to sleep and even then she could wake up after an hour. She
is not potty trained. She takes off her diaper randomly and urinates everywhere or smears feces.
This happens more often at night. Many times I have had to clean feces from the bed, walls,
carpet in the middle of the night.

She doesn't respond to her name. She cannot follow 1 step instruction. She doesn't eat very well,
the only way I can feed her is by following her around and sneaking small bits of food in to her
mouth. She cannot communicate her needs, which results in almost constant tantrums. She has
pica and tries to eat the walls, lotions, shampoo, soap etc. every chance she gets. She has
constant vocal stims. Screams kicks and hits for the entire duration of a bath or changes of
clothing. She fluctuates from constipation to diarrhea. She has sensory issues that limits where
and when we can take her. Anything that can be emptied or dumped is. Everywhere. Bedsheets
are taken off; laundry is dragged out and thrown everywhere. She will not sit down anywhere.
Ever. She has OCD. Cutting her nails is an ordeal. During diaper changes, she is constantly
kicking and screaming. She is not functionally verbal.

My 4 year old is potty trained for urine but for bowel movements, asks for a diaper. This is a step
up from smearing feces. Only eats salty, crunchy foods. Has fine motor issues that severely
impair day to day functioning. He cannot put on or take off his shoes, brush his teeth, eat with
utensils or dress/undress by himself. He is either very sensory defensive or seeks a lot of input. If
he doesn't have this input, we have tantrums. He is currently co-sleeping with my husband
because of his severe anxiety around any change or transitions. Has limited verbal skills. If the
fixation of the moment is Wiggles, I will have to watch Wiggles, 50 times a day. They don't play
with each other. They cannot stand each other. So if one is in the vicinity, the other one will start
screaming and crying.

I usually don't have time for day to day things like, cooking, cleaning or laundry. Or if I do, I am
so severely depleted I am unable to do so. I am been on so many different anti depressants,
which don't really work, I lost count. I have been taking medication for anxiety and panic
attacks. I do not have any family here, so I do this 7 days a week, 24 hours. And now, I can
insomnia to my list as well. My husband is self-employed and hasn't made money in a couple of
years. We have sold our house, and pretty much whatever else that was worth anything. My
husband recently was diagnosed with Aspergers. For those of you that are familiar with this, you
know the implications this can have on the spouse. I am burnt out. Exhausted mentally,
emotionally, physically and financially and on the verge of a nervous breakdown. We are going
to lose everything. Medical insurance, behavioral therapy, OT/pt, speech and we will probably be
homeless. It is not a long shot to assume that my marriage, after years of neglect and constant
financial/emotional strain, will hit a wall.

After carving out what little time and brain cells I had to fill out the paperwork for 2 kids, I am
on the waiting list for CES, which should be about 2 years. Also, HCBS, send me some
paperwork for additional info last week. They want all of it by the 13th of June or they will deny
me AGAIN and require me to reapply. There is no way I will be able to get all of it by Tuesday.
The Autism Waiver is the one that angers me the most. There are only 18 kids on it out of a
possible 75. We already have approved providers on board!!!! I am just not sure why we cannot
get some help now!! It doesn't make sense to wait until we are homeless, on food stamps, welfare
and SSI/Medicaid for us to get some help. Immediate help would allow us to retain our family
unit, a little bit of dignity and hope to start clawing ourselves out from this mountain of debt. So
if the criteria for "Exceptions to the Waiting List", is becoming homeless, or losing the caretaker
and/or whatever may apply here, please tell me how to do this. I really don't have months to wait
and I can't fill out 100 pages of paperwork. I am very sleep deprived and an emotional basket
case and I really feel like I have no where to turn. If anyone reading this is in a position to help
me, please contact me right away. I would be eternally grateful, as would my family. Thank you