Mental Challenged Support Group

Anyone have this situation?

Oh wow... Well, to start with I kinda feel that when I was in VA, they where playing gaes with us as well... I tried to get my daughter into head start and that never happend... SO I started to homeschool, which is good... But I mean, honestly I am no way a special education specalist, but I was able to to teach her simple things and get her potty trained... Which are all very important and it will make her transition into special ed out here in OR a lot more helpful... But yes, we were pushed around bossed around... ALL of that... I mean the genetics doctor in VA tested my daughter twice for carnitine deficiency and failed to tell me she had it at all... SO... My only adcive to deal with places that are not reallly fair is to keep fighting... Currently I am going to be talking to some lawyers about what happend to us in VA so it doesnt happen to others... BUT who knows how that will go. I do not know a whole lot about medicare as we have tri-care prime ( my husbad is active duty USN )... But I was told here in OR ... That all people with special needs no matter where in the US, are entitled to IN-HOME services... And special education, etc... So just keep fighting... It really erks me when they treat people with special needs wrongly !!! Maybe if there is a way you can get her doctor involved, or medicare involved from her previous state ? If worse comes to worse there are always lawyers that will put the heat on pro-bono... My prayers are with you ! Don't give up :) It took me 7 years just to get the initial diagnosis.

Hello,
I am very new to this group so I hope I am not out of line replying to your post but I wanted to say that I can understand your frustration.

I have three boys with severe disabilities (ages 17 and 8 yr.twins) and I am just now beginning to get to where I feel comfortable with advocating for my children in regards to goverment agencies.

I am not sure what your state's requirements are or your exact situation but once began to change things in our favor was the luck we finally had in in finding an advocate to help, I now have several with strong ties to the states office which controls the funding and this has made a huge difference.

Have you tried your state's ARC organization? I would also contact any departments on the state level regarding disabilities. Perhaps your Developmental disabilities council ? I think all state's also have a disability law center.

Never give up.I homeschooled my oldest for five years before I was finally able to get the school district to work with me.

Now I am still fighting getting family support for him and although my twins are receiving services as far as being accepted for funding, there is a lack of respite providers in my area.

But, I think that once I stopped feeling like it was me againt them , it has been alot stressful.

So, anyway you can get try and find an advocate who can help.

Good luck, my prayers and thoughts are with you.

Thank you for your support and suggestions! I have finally got their attention, and I hope my DD will begin services within 30 days. I contacted everyone from the DD Council to my Congressmen.
Thank you again!

I too am relocating because of my daughters MRDD Waiver. I haven't have ANY outside help in over 2 years. We applyed for LTPCS but were denied because she was not in "Imminent Risk", which means"She is not in a nursing faciliy and are not likey to go into a nursing facility within the next 120 days". Isn't that why they have Long Term Case?. I DON"T want to place her. I'm in LA and am heading to CO if anyone knows info for there. Do not come to Louisiana!