The Waiting List

The demand for supports for people with intellectual and developmental disabilities in Tennessee is greater than any time in the past. Children and adults remain on waiting lists for years after requesting necessary services and supports. Many are desperate and under extraordinary stress.

The Arc of Tennessee is leading a Campaign called Ready, Willing...WAITING to provide information to Legislators about the needs of Tennessee Citizens with intellectual disabilities. The goal of our Campaign is to seek more funding for programs provided by the Tennessee Division of Intellectual Disabilities Services for supports that are needed by people to live meaningful lives in their communities and at home.

We need your help to tell your personal story and provide information to your Legislators in your community. The Arc of Tennessee will provide an issues paper, talking points and the name and contact information of your Legislators. You can tell your personal stories either by meeting with your Legislators or writing them a letter. We can also help you tell your story, if you need assistance.

The Arc of Tennessee has developed an Issues Paper about this crisis in our community.

Click the following links to submit your personal story/photo, to learn about the history of the waiting list, or to view legislation enacted during 2008:

• My Personal Story
• Waiting List History
• 2008 Legislation

Personal Stories

My son, Louie, is a 9 year old boy with Angelman syndrome (AS), a genetic disorder with no known risk factors. As do all people with AS, he has seizures and mental retardation, a balance disorder and a terrific sense of humor. Also, like all others who suffer from Angelman syndrome, he is unable to speak. He is affectionate and friendly and loves his family, teachers and school friends. Louie is a happy, though mischievous, little boy. He learned to walk at the age of 4, and has been getting into trouble ever since. Louie needs a one-on-one aide by his side at all times of every day in every environment. At home and church, this role is currently taken by family members. At school and after-care, he has a full-time aide assigned to him. He needs physical therapy, occupational therapy and speech therapy. He has a special car seat and a special voice-output communication device to help him make his needs known. He wears pull-ups and is learning to be toilet-trained. He needs to receive emergency seizure meds within 5 minutes of the onset of a seizure. Louie's mother and 4 older sisters have provided much of the child-care and home one-on-one services since he was born, but his sisters are about to go off to college and make lives of their own. His oldest sister is in medical school. His second oldest sister has been accepted to Yale for fall, 2008. He has two other sisters (twins) who are currently in the 10th grade. Therapy and childcare are expensive and time-consuming. Without respite care, it is counter-productive for Louie's mom to work when she has to provide all the care for him, so she may have to quit her job as a researcher at Vanderbilt when the twins leave for college. Because his mother's job is researching a cure for Angelman syndrome, this is especially poignant.

My son Dylan has been on the waiting list for about 4 years now; he will be sixteen in March 2008. He has Autism and Mental Retardation. His range of severity is between severe and profound. His mental level is that of a 3 to 8 year old. For the last several years I have been unable to keep a job because I have no one to care for him concerning after school, holidays or summer break. My husband works full-time with The Army National Guard and as of now that is the only income we have to support a family of five. Without my income we have been faced with; utilities, gas, water and phone being cut off. This has become an every month situation. We need services for after-school care, holiday and summer. My husband works full-time with The Army National Guard and as of now that is the only income we have to support a family of five. Without my income we have been faced with; utilities, gas, water and phone being cut off. This has become an every month situation. In fact this past November I even lost my vehicle. We are down to one truck that can't even transport us all because it only holds 4 riders. Our refrigerator is always bare with no end in sight. I have been told by the state that we have to be homeless or that Dylan has to be dying in order for us to receive immediate help. We have no where else to turn, no one else to help and no one is listening!! We do however receive the "CDS Funds", this money is great, but nowhere near the help we need to last throughout the year. How can I be a productive working citizen if I can't work? There are so many Americans who receive federal or state support simply because they choose not to work and along the way got some doctor to support them. Where is the help for those who want to work and can't because there's no one to help them? When will our elected officials listen to the parents who are desperate and crying out? After more than ten years of dealing with all the frustrations that goes along in raising a child with a disability, suicide seems very comforting. No more pain, wondering when or if, why and/or does it ever get any better? I tried this attempt on January 10, 2008 but was unsuccessful. This has become more than I can deal with emotionally ... It's a never ending saga of who needs what more!!!!!

My son, Diego, is nine years old. He has autism. He speaks and behaves like a three year old but has a body of a teenager. He understands most everything you say and cooperates from time to time. He is on medication to control his mood swings for aggression and to help him sleep. He is like an engine, once he's awake he doesn't know how to stop. I really need someone who can take care of him for me to work, or just to go out and take a break. He looks like a typical child and behaves because of his medication but I can't find a child care provider, day care or particular person who wants to take care of him for me to work. It is a shame that I have a Masters Degree that I can't even use because no one wants to take care of him. I also have two more children that can go to day care without a problem, but once you say that your oldest is special needs, they cut you right front and say we don't provide for those kids here. There should be a more strict law for the day care centers to protect my child from being turned down because he has a disability. There is no after-school services for him and there is no respite care so I can't go anywhere, not even to church. So I'm a single parent who hates to keep living on an SSI check, on government housing with a horrible neighborhood where we can't even go out without being scared for our lives, eating from food stamps, and having TennCare for health care. This is not a way of life for anyone. I don't want the government to take care of my family my whole life. I'm a productive human being.

Our daughter, Amanda has been on the waiting list for over eight years. She is now attending Community Developmental Services (CDS) in Martin. They finally agreed to our request for "private pay." She started in September 2009. Not many families can private pay, but we are blessed to be able to send our special daughter for services. We have been pleased with CDS. The staff has been attentive to Amanda's needs in every way. It's just sad that so many have not had the opportunity for services that would enrich their lives. The state of Tennessee should be ashamed that its most vulnerable citizens are considered unworthy of care and services. Our elected officials should be required to visit first hand some of the families on the waiting list and to visit some of the centers/providers. It may change some hearts.