Her name is Robin Lee Czumak, a severely developmentally disabled young lady. While Robin is chronologically 27-years-old, she is developmentally, psychologically, educationally, emotionally, socially and cognitively or intellectually at approximately 8 to 10 months old -- an infant in need of 24 hour awake staff and 24-hour nursing. Robin does not self-preserve. As with any 8 or 10 month old she needs complete assistance from others and has a history of seizures.

Robin is our daughter and since the day she was formally diagnosed (at eight-months-old) we have had a never-ending battle with a system that was supposedly put in place to protect her rights. But her right to choice, her right to safety, her right to try and reach her potential and her right to live in and participate in her own community and her right to necessary services given her unique and diverse needs are all in serious jeopardy.

Robin and her family need your help. When Robin was first diagnosed in 1973, we were advised to put her into an institution and forget we had a daughter. Obviously, we had no intenton of denying the existence of our first born. Robin was at home until she was approximately nine-years-old, then it became clear to us that she needed constant reinforcement and 24-hour professional care that was impossible to give her at home. Sadly, we faced the realization that we were not professionals in the areas that counted. All we could give her was our love and support. And no matter where she is our love is forever hers.

We searched very carefully and found a wonderful and caring facility that would become her home for almost 19 years. The only problem is that this facility is not in her home State but instead in a neighboring State. This was not a problem for us since we simply hopped in our car and travelled 1-1/2 hours to the facility each week. But it became a real problem for the home State (The cost was incurred by Robin's home State, since they had to placed her there).There was, and is still nothing available in her home state that is considered, by us and other professionals who have worked with Robin, to be appropriate for her.

Every year during Robin's IEP (Individual Educational Program) meeting would bring about differences of opinion regarding this placement. And in 1987 they refused to allow her to stay in this placement, forcing us into litigation. We prevailed, since this facility was found appropriate for Robin, and she was allowed to remain in her program. I can remember our attorney at the time stating that, in his opinion, the State would never go after us two years in a row. I just smiled and said "Well, we'll see!" Sure enough, at the end of the next year's IEP Meeting they stated once more that they had no intention of funding her program at her present facility. Once again, in 1988, we ended up in litigation, over the same issues and, once again, we prevailed on the merits.

In this same year, during the hearing for Robin our son, Cory (age 13) was diagnosed with a Cancerous brain tumor. Many siblings are troubled having a disabled sister (or brother), but our son Cory was Robin's best friend -- helping with her needs and interpreting her wants and desires. He was well known and liked by the staff at Robin's residence. He had great plans for his and her adulthood. I had never pressured him to take on the responsibility of his sister , but must admit I took great delight that when I left this earth he would be there for Robin. Well, life isn't always fair -- our son lost his battle with cancer in June, 1989.

Then Robin turned 21 years old and we found ourselves battling once more with the adult services in the home State. Robin was only 19 years old when I first contacted the Department and two years later when she turned of age she was already found eligible for services through Medicaid waiver funding but they still had her on some waiting list (remember, Robin was already being serviced in the out-of-state facility). When they finally decided they had better do something they wanted to remove her from her home and place her in a local (in-state) community home. In good faith, I tried to cooperate visiting many of these homes but found they were just not appropriate, given Robin's level of need. Robin needs intermediate care level of services.

Finally, in 1994 (Robin was 22 years old) they agreed she should remain in the out-of-state facility. We were happy to see her remain in a program where she had flourished and, although they were minute, her gains increased. But Our happiness was short-lived.

Within a couple of years Robin's father was forced into retirement and we had no choice but to relocate due the increase in the cost of living. Timing is everything, so they say -- and we wonder if the home State once they realized we were retired and living on a fix income decided we no longer would be able to battle effectively for Robin's rights. Once again in1997, the home State made a determination not to fund Robin in this placement any longer, but made no definitive offer beyond that. They instead suggested that we try for services in another State. This unilateral decision was made by State personnel who haven't even met our daughter and have no idea the extent or severity of her disability, nor have they ever seen the Community based care facillity where she resides.

Robin is in need of very "Human" Services which should include Intermediate Care with activities and a program that will continue to stimulate and encourage growth in all areas. One must never forget her quality of life and most importantly her safety. However, it seems there's no interest on the home State's part to continue providing Robin with these appropriate services. The only offer they made was that of a nursing home (or in my opinion a "holding tank") for the disabled. Apparently, the State would rather force us into litigation costing an exhorbitant amount in legal fees or hope we will throw our hands up in surrender. It appears there's enough money at the State level to battle families and guardians of the disabled, but no enough money to continue to offer appropriate services in accordance with the law. Robin Lee Czumak is a United States citizen, but is being denied her rights, in our view, under the U.S. Constitution and ADA (Americans Disabilities Act) all for (1) the want to ultimately save a few bucks by warehousing her within a State that has nothing comparable to what she is receiving today; (2) the desire to remove her by arbitrarily decertifying the facility that is her home of 19 years and if that doesn't work then (3) the desire to relinquish their responsibility altogether toward Robin by declaring her a non-resident.

• The home State who originally placed her in the out-of-state facility claims she is no longer a resident because her parents/guardian don't reside in the home state any longer -- even though she was already an adult when we retired and relocated.
• The State where she has resided for almost nineteen (19) years claims she is not a resident because she is not domiciled there since her home state (above) originally placed her there.
• The State were her guardians now live claims she is not a resident since she has never lived there and resides in another State.

This would leave Robin, as a U.S. Citizen, without a home State. Clearly this is illegal!

Raising a disabled child is by no means an easy task. It is an awsome responsibility to insure her needs are met and her quality of life is the best it can be and that her safety is insured at all times. Our daughter is truly a blessing to us in many ways. She has taught us a great deal about her world and ours!

Our family has suffered greatly with the loss of Robin's brother, our only son, to cancer at age 14 and having a child with severe disabilities can be quite devastating in and of itself. However, along with that comes the constant battle to protect her from losing her right to life, liberty and the pursuit of happiness. This can be downright exhausting and the financial burden is overwhelming. Our concern now is that we can be forced into litigation on a recurring basis and that we may not be able to effectively protect our daughters rights without the financial ability to do so. Robin needs our help and yours, too!
 
 

If you or someone you know has gone through a similar battle, we would love to hear from you. Please e-mail me at [email protected]. If you could find it in your heart to donate to The Robin Lee Czumak Legal Fund (Any amount no matter how small would be greatly appreciated.) Please send your donation to: