We won - long

[buffettgirl]

Some of you may recall that my DH and I are fighting a legal battle with our county mental retardation department. My son, who has Prader Willi Syndrome, is clinically diagnosed as retarded, even though his IQ is over 70. It has to do with his adaptive abilities and the widely disparate IQ scores on different parts of his brain. The county says he isn't retarded based soley on the IQ score, which isn't what the legal guidelines say. Tristan was denied services, which we appealed to the Dept of Welfare. We won, but the county appealed that decision to the Commonwealth Court of PA. We appeared before a panel of three judges a little over a month ago. Our lawyer called to today to tell us the court upheld the decision. Unfortunaly, that probably won't be the end of our 3 year ordeal. We expect the county to appeal to the State Supreme Court, even though our lawyer doesn't think they will hear the case. We have learned that justice delayed is justice denied. So I have mixed feelings. I'm very happy we won, which we fully expected. I just wish the county would do it's job, stop wasting our and taxpayers money on lawyers, and provide the appropriate service for our son

Ultimately, we want the county to provide funds for our son to move into a residence specific for his syndrome. There is a very good one a couple hours away from home. It would provide better diet control, an exercise program, a job and a social life for our son.

 

[allwildgirl]

Oh, Robin, I'm so happy that you won. But I'm sorry that the stupid county is being so incredibly stubborn about this. I hope that things all turn out well, and that you get the assistance that you need and that your son is ultimately able to be in a place that will help him live more easily with his disorder

 

[andtckrtoo]

Robin -

Good luck to you and your family! I'm happy to hear you won, but sorry to hear that the battle will probably be prolonged. I cannot imagine the situation you're in. I'll keep you and your son in my prayers and hope that the best solution for him is found quickly. Hugs!

 

[buffettgirl]

Christine, Shelley and other Cathe friends,
Thanks you all for your good thoughts. It's been due to the support and prayers of friends like you that have upheld us this far.

 

[dlavie]

Robin,

My prayers are with you. My wife and I took on Social Security on behalf of our kids, 2 years and we lost. Luckily a probono legal aid society helped us with the case. We finally got some help from Medicare (Katie Beckett waiver).

Hang in there you will often be your child's only advocate.

Dave

 

[robyn6002]

Robin:

So good to hear the outcome... man what an ordeal. My prayers and thoughts are with you. Yes it makes a huge difference.

- Robyn

 

[Rose11]

I'm also glad you won too, Robin. You're a great mom. I really hope that you get the funds for your son. Now that I'm getting older I'm starting to appreciate all the sacrifices my mom made for us. My younger brother did very poorly on his IQ test and my mom was going through a hard time finding a school that would accept him because he kept getting really bad grades and was thrown out of four schools and she fought hard. It turned out he was dyslexic and not mentally retarded. He's now a grown married man and now I see that all the fights my mother endured were worth it. I have read about Prader Willi syndrome and I have also seen some documentaries of parents that have kids with this condition and it is very hard to see kids suffer with it. I'll keep your son in my prayers and you keep on fighting for him. God bless you.