Hi & thanx 4 the warm welcome! The state of NY has the Office of Mental Retardation and Developmental Disabilities. The branch that cover my area is Taconic Developmental Disabilities Services OFFICE. Taconic is an Indian word & we have the Taconic Parkway here, so they use that name alot.
Let's see...since my 20 yr. old is still in school, he gets child support till he graduates, when he does, his SSI may increase if he loses support. I will have to go back to court this year & show papers that both kids are disabled to keep my $75 a week in spousal maintenance & maybe even get an increase. My ex makes over $80,000 a year, & I have NOT asked for an increase once in the last 9 years. The reason being if we get an increase in support, the SSI goes down. The end result is the same monthly income, an irritated irrate dad who then won't take the kids every other weekend, & me flipping out! When I go back to court I want to drop my older son from support, get more $$ for my younger son (he is also insulin dependant & on 3 injections a day) as well as more spousal maintenance.
I agree about the abled kids comment you made. Seems like the respite, etc. is based on how ABLED the parents are, not the kids. I am so stressed I may become nuts & then qualify, LOL!
Everytime I hear of some program, I then find we are not eligible for some stupid reason, & the red tape & paperwork seems to make it almost impossible, so I try to take care of everything myself. I am the queen of bargain shopping!
I also have been told by some idiotic people that I should get a job & a life by strangers, & even my own Mom! I have NO CHILDCARE & legally cannot leave a diabetic PDD kid alone, unless I want to go to jail & lose custody, or risk having something bad happen to my son.
I would definitely consider my kids living in a group home or supported apartment after the age of 21, as you have say so over where, when, how & why at that point, & can yank them out of anything that is unsavory.
Both are in special ed 1:8:1 classes & have strong academics.
There is an ARC in my area & they can't do a blessed thing for either kid unless approved by the DDSO, who holds the purse strings...
I would love to go on Oprah or Dr. Phil & clue some people in on this!
There is an old saying "No good deed goes unpunished!" Yes, a good mom to disabled kids gets no help...if moving would benefit the kids, I would do so. I have even wondered about Canada or Norway.