What is Autism? Click here to learn more about autism.

Return to top of page.

7 March 2002

I don’t think it is fair for parents to have to support their children by themselves their whole lives. I know that I’m going off to college and getting a job to support myself. But what about my brother? He won’t be able to get a job to take care of himself, and it will be left up to my parents. It costs about $100,000 a year to put your child in a group home, and I know for a fact that most families cannot afford that. Some parents could have their child stay and live with them, but they can’t do that without some sort of daycare program or employment support. Even then, they can’t have a child at home forever.

Everyone needs to be independent in one way or another, whether it is living alone or even just learning how to button your own shirt. If the group homes and support were already provided, it would help both the parents and the child. The parents wouldn’t have to pay for housing and special care, and at the same time the child would be learning independence and other important values. I know my brother’s class has only gotten to buttoning their own shirts. When the time comes for them to go out on their own, they are going to need help. I am here today to ask you for the funding for that help which many people need. I am only in sixth grade but I already know that it is your job to help, so please do.

Thank you.

Lydia Fisher Gray

Return to top of page.

March 7, 2002

My name is Robert Padgett and I live at 808 Evergreen Road in Magnolia, Delaware. I'm 14 years old and my brother, Lucas, is autistic. Lucas is 11 and has trouble talking and thinking. He works very hard trying to understand everyday life.
I'm starting to think about what college I want to go to, and what I want to be when I grow up. I might want to go to Annapolis and be a Naval Aviator. But what if my brother doesn't have any help getting a job or a place to live when he grows up? Then once my parents are gone, I'll have to be home with my brother all the time. It's hard enough just to think about my future, let alone what my future will be like if there's no help for Lucas when he's grown up.

I'm very proud of my brother. Doctors said he'd never speak, but he does. He also ties his shoes, uses a calculator to add, and is learning to cook food in a microwave oven. Thanks to the Delaware Autism Program he's learning to function in a world he doesn't understand. 
Please don't let all his hard work be for nothing.

Please do the right thing and provide the money to help adults like Lucas find jobs and have lives.

Please give me the chance to have a job and a life, too.

Return to top of page.

My name is Artie Kempner, and this is the fourth year in a row that I have testified before this committee. I have three young sons who are 8, 7, and 5. My 7 year old, Ethan, has autism and attends the Delaware Autism Program in Newark. You may remember that last year Ethan joined me in these chambers during testimony – he was the cute guy on my shoulders!

Because of the wonderful D-A-P program, Ethan is now able to do things that would have been impossible 20 years ago with the educational services that were available. D-A-P has taught Ethan how to speak, how to use a computer, how to ride a bike, and mot importantly teaches Ethan how to help himself.

This past January, we took a family ski vacation to Vermont and put all the boys in ski camp, including Ethan. With the help of a 20-year old counselor – who had no real training in autism, Ethan learned to ski independently. The greatest family moment that my wife Marcy and I have had was for all five of us to come down the mountain together. If you could have seen Ethan’s face as he was shushing down that mountain you would know why the services he receives are so well worth it.

I have come here the last fours years to encourage, prod and push this committee to take our adult service programs to a higher level. Studies have proven that our adults with autism and special needs can continue to learn and continue to grow as people. I’m not going to tell you that this doesn’t come without a cost and is not a challenge. The bottom line is that if we put a more comprehensive service program in place, and give this population a chance, the costs will go down.

I will use the vocational program at the DAP as an example of how a well-run program can make such a distinct difference. The Delaware Autism Program graduates over 70% of its students with a job placement. That compares with the national average of fewer than 25%. These adults with autism becoming earning members of our community and in many cases hold down jobs that typical workers do not want to fill.

We can replicate this success at the adult services level if we appropriate the proper funding. Presently the majority of staff working with adults makes at or just above minimum wage. If we are to build a program that will be successful, we have to increase these wages. If we increase the wages we will see the standards of the programs increase. We are in a vicious cycle that revolves around low pay, insufficient training and high turnover.

It is time to make a commitment to this community. It is time to allocate the funds that will help service providers hire experienced and trained professionals to develop comprehensive programs. It is time to look forward and do the right thing. This pas January, my son Ethan skied down a mountain, all by himself. But before he could accomplish that feat, he had to climb the challenging mountain that is autism. He could NOT have done that without a great deal of help. So help our adults climb and conquer their mountain.

Sincerely,

Artie Kempner

Return to top of page.

March 7, 2002

Honorable Senator Vaughn, Representative Di Pinto and distinguished members of the Joint Finance Committee:

My name is Joanne Smythe. I am the mother of seven children. Although raising seven children is no easy task, my two youngest children have presented the greatest difficulties for my family and me. My son Bobby, twenty-two, who has both a mental illness and developmental disability is receiving services through the DDDS Adult Special Population Program.

This year, my daughter Susan, twenty-one, who has autism, will be graduating from the Delaware Autism Program (DAP). Susie has been in the Autism Program since she was two and a half years old. Susan presents many challenges. In addition to having autism, she also has self-abusive behaviors that could result in severe injuries if not addressed. Susie needs constant care, supervision, and support. She sleeps less than five hours a night and can’t ever be left unattended.

A few years ago, the staff at the Autism Program suggested we place Susie in their residential program, not only because it became increasingly difficult for me and my husband to care for her, but also because they felt that the very structured setting of the DAP would give her the opportunities to learn the independence skills she needed to succeed as an adult.

However, they key to Susie’s success is support, by professionals who are trained to help her manage her behaviors, and who can continue to teach her to care for herself. I can’t do that. Susie is too complex and demanding for one person or one family. Many years ago, she probably would have been place in an institution. I am thankful that she was able to attend a good school program and live at home with us for as long as she has.

But, If Susie were to return to live with us, we wouldn’t survive the strain she puts on us. Whenever Susie comes hoe, I can’t leave the house and have to spend every waking hour by her side. It’s too much to ask of one person, to provide that kind of intense care every day. Furthermore, Susie needs a very structured environment that is impossible to create in our home.

Please understand, we are not planning on giving Susie up, all I am asking is that we be given a chance to continue the life we have with her right now, where she can live in a group home, continue learning and be safe. Her family and I will continue to be an important part of her life just as we are now.

Fore just one minute, I am asking you to think of Susie a your child, and of me as yourselves. Wouldn’t you want me to reexamine my priorities, and make sure that when I make a decision on how state dollars are spent, that the lives of people like Susie rank higher than roads, new court houses or state slogans?

Thank you for listening, and thank you for doing what you believe is right for Susie and my family.

Respectfully,

Joanne Smythe

March 4, 2002

Dear Mr. & Mrs. Smythe

I am writing in response to your request for an assessment of your daughter Susan’s need for residential placement once she attains adult status. As you well know Susan initially came to our residence at the Delaware Autism Program as an emergency placement. At that time she displayed a number of inappropriate and maladaptive behaviors including severe self-abuse and self-injury, temper tantrums and non-compliance, as well as acute sleeping and eating disorders. During he course of her educational program Susan has since made tremendous progress. Not only has she eliminated all but the last vestiges of the original presenting behaviors, but she has also mastered many of the skills necessary for successful daily living and for participation in normal domestic and community activities. These gains, however, must be regarded as somewhat fragile. There is considerable evidence that, should the supportive context and trained staff currently in place be reduced or eliminated, Susan would almost certainly regress. In the event that adult services, including residential placement, are unavailable I can say with great certainty that Susan will eventually revert to her former patterns of behavior; the only relevant question would concern how rapidly such deterioration might occur. In view of the potential harm to Susan’s educational attainments and to her personal well-being, I urge you to do all within your capacity to secure appropriate placement and services for Susan as she reaches adulthood. In closing I would like to say that Susan has grown into a fine young woman with great potential for a satisfying and productive life. I wish her and all of your family the best of luck in the future. Please let me know if I can be of any further assistance.

Sincerely,

Mark J. Murphy

Residential Program Advisor

Return to top of page.

Dear Distinguished Members of the Joint Finance Committee;

I am writing about an issue of great concern to me and to my family. This issue directly affects the welfare of my son Brian.

Brian has a disability that has an impact on every aspect of his life and the lives of his family. Brian has autism. As a parent, I anticipate the time when Brian will be an adult. In light of the current lack of funding for adult services, that anticipation is partly clouded with fear.

During Brian’s education, the teachers spend much time telling me that the skills learned in school will ensure a brighter future for children with autism.  At 21 years of age, Brian will leave the educational setting. Brian will continue to need vocational services, day and/or residential services to continue to live a productive and meaningful life. If the skills Brian learned aren’t maintained, the quality education he received will be but a distant memory.

Furthermore, as all parents, I need to know that my son has a safe, stimulating, nurturing place to live after I am no longer able to care for him.

Please put people first. Funds must be made available so that these essential services are provided to my son with a significant disability and others like him. Please keep Brain in mind during the upcoming budget hearings so my dream for a bright future for Brian will come true.

Yours truly,

Charlene Triplett

Return to top of page.

To all members of the Joint Finance Committee of 2002;

My name is Karen Bashkow and this is my son, Ben. Ben was sixteen this past February. He attends the Delaware Autism Program (DAP) in Newark and has been a student there for 10 years. He’s made wonderful strides behaviorally, socially and vocationally. His receptive language skills have also improved since he was a young child. All of these things are thanks to the skilled professionals at DAP who have helped Ben develop and grow each passing year.

Ben has many gifts including his beautiful smile and happy demeanor which often fill my heart with joy. He’s a young man who gets much happiness out of the smallest things. He loves to take a walk with his Mom in the evening after dinner. His pride fills a room when praised for a job well done at Dollarland where he stocks the soda cases, shelves and helps keep the store straightened up. I’m here today out of the concern I have for the time when Ben is no longer a student at DAP. It takes so little to make Ben happy but if there are no services for him when he graduates and he has little or nothing to fill his life, I imagine the happiness will no longer be obvious on his face.

There are many frightening things I’m hearing with the budget cuts that have already occurred. I hear that only kids with the severest of disabilities are receiving residential services and that many parents are desperately trying to cope with their adult child at home because there are others more severe that must be served first. I hear that the group homes are often staffed with personnel, with little or no understanding of autism, that allow behaviors to occur that those trained to teach autistic people would find simply unacceptable, just as you and I would find them unacceptable.

Should I conclude that these kids go to school and learn how to act appropriately only to be disqualified or put at the bottom of the list to receive services? And that they are allowed to regress when cared for by staff that are unfamiliar with autism?

These individuals with autism are not capable of achieving the level of independence that we in this room have achieved. They desperately need your help. There needs to be proper funding to provide vocational,, day and residential services for those adults already in the system and those students coming out of school this year. Behaviors may be under control now but if a child is forced into inactivity because there is no money available to provide services, the behaviors will return when that person no longer has a job or a purpose or no longer lives in a structured, nurturing environment. They will also lose skills it has taken years to teach them.

As the parent of this handsome young man, I am asking for my son, to please help provide funds so services can continue to be offered to all those individuals with disabilities today, tomorrow and in five years when Ben will be an adult. Then the quality of life he has now, will continue and he will find happiness in the small joys of living.

Thank you for listening,

Karen Bashkow

Return to top of page.

March 7, 2002

Senator Vaughn, Representative Di Pinto, and distinguished members and representatives of the Joint Finance Committee, the Division of Developmental Disabilities Services, and the Budget Office:

My name is Marie-Anne Aghazadian.

Thank you for the opportunity to address you today, as this marks my 15^th testimony in front of this committee.

I am the Chair of the Adult Issues Committee of the Autism Society of Delaware and also the parent of Stefan, an adult with autism.

Although the reason for my standing here today has not changed over the years, the world we live in has. The events of September 11^th, have led us to question whether our children and loved ones live in a world that is safe and promising. Those feelings of loss and uncertainty have given us a new sense of who and what truly matters.

Governor Minner has demonstrated that children matter by exempting the Children’s Department from budget cuts asked of all other state agencies. In fact, to enhance the Children’s Department’s programs for foster and kinship care, her administration allocated additional funds for FY 2003. She has kept her campaign promise of insuring that the State’s budget not be balanced on the backs of Delaware’s children and that vulnerable populations not become victims of a declining economy.

Unfortunately, her grave concern for children did not extend to children with developmental disabilities and their families.

The two percent cut and zero growth in the 2003 budget that she has requested of the Division of Developmental Disabilities Services will dramatically affect the Division’s ability to plan for graduates of special education programs, and family support services such as respite and case management.

Are we to assume that families of children with disabilities are not worth the same consideration as Foster and kinship families, and do biological families have to give their children up to foster care so that they receive the services they need? Governor Minner’s actions seem harsh and unfair, leaving many families of children with disabilities devalued and hurt.

Beyond the inequity of her decision lie considerable economic and human factors. Taking into account how much money and effort have been spent on the education of children with disabilities, how can we justify shattering their aspirations for a life of purpose and meaning? And after the testimonies you heard today, how can you ask families to make the kind of personal, emotional and financial sacrifice that the lifelong care for their disabled child would demand?

In 1989, your then fellow legislators recognized that young people with severe developmental disabilities, including autism, needed support and services well beyond their school years to continue functioning in their communities. They responded by creating the Post-21 Program, which was designed to serve youth, who because of the urgency and severity of their needs, could not be served in typical adult community services of placed on a wait list.

My own son, Stefan, now 31 years old has been receiving services through the Post-21 Program for the past ten years. He has been in supportive paid work for eleven years and is living in a home of his own in Newark. He has three roommates, friends in the community and is supported by capable staff who truly cares about him. Stefan’s well being has made a huge difference in our lives allowing him and use to be productive and taxpaying members of our Delaware community.

I realize that our State is facing a downturn in revenues, that money is scarce, and numbers drive decisions. Yet, I have to trust, that you as I, believe that numbers and needs don’t always match.

You have the unique opportunity to set a wrong right and make sure that they welfare of all our children stays a priority when you draw up the States budget bill.

Respectfully submitted,

Marie-Anne Aghazadian

Return to top of page.