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 hockeygoalie 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-ofhome 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-ownhome 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 reapprove 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