info about getting services for difficult child

Discussion in 'Parent Emeritus' started by Winnielg, Mar 17, 2013.

  1. Winnielg

    Winnielg New Member

    I had posted a long comment in general parenting in response to how I was going about getting adult services for my difficult child and thought that maybe I would post my experience in the emeritus as my difficult child will be 18 in a few months.

    From my DDay post:
    Greene and DDD. Sorry I guess I was typing and did not see your posts. I am going to explain at length because I hope it will be helpful. It took my months and hundreds of phone calls to navigate this so if what I learned helps someone else then GREAT!

    I have been working for just over a year to put things in place for the 'in case we get hit by a bus' idea and difficult child needs someone to help him. We do not expect family to have to be responsible for him for life so I started making phone calls to both mental health and developmental agencies. What I found was that our school district, who I thought had been pretty good and kind of still do, let us down. They should have been steering us in this direction all along, but instead kept saying difficult child was college bound and never went that route.

    The difference between developmental and mental health options in NYS is vast. We ended up choosing developmental because mental health is so weirdly broad and the services offered were more geared toward psychiatric commitment rather that living in the community.

    So we applied to the Office of Persons with Developmental Disabilities, aka OPWDD, in NYS to have him declared disabled. We were told by many that this is a lengthly process and most people have to appeal and they get denied the first time. To navigate these systems is insane.

    Now I am pretty type A when it comes to documentation and paperwork for difficult child as over the years I have had to provide all kinds of stuff to various providers and agencies, so I do not know if that helped me in the end, but difficult child was approved by OPWDD the first time. Now he has had a documented IEP history since age 6 and an autism diagnosis on at least some paperwork - they like that better than Asbergers evidently. I also included every psychiatric report (I think I have 4), police reports, mobile crisis documents, a copy of his latest IEP which included him having to be transferred to another school, his psychiatric ward discharge paperwork, school discipline copies, and his NYS PINS application ( which was a complete waste of time - a story for another time). When my husband and I got the letter stating that OPWDD has declared difficult child developmentally disabled and eligible for services, we were thrilled but chuckled as to the statement that they deemed him so.

    Now comes the weird part. OPWDD gave me a list of approved agencies to choose from to apply for these services. I called several to get a feel for them and picked one that seemed the most knowledgeable about Autism Spectrum Disorders (ASD).

    The state is moving away from group home idea to a community service support (CSS) system which works out great for Autism Spectrum Disorders (ASD) folks as most are too high functioning to be eligible for a group home. My contact said difficult child is a perfect candidate for CSS and that is what we are working towards. This would include living assistance paid for by disability, but employment supports, a case coordinator (which is currently me), potentially transportation to medical appts and other necessary living supports.

    In NYS things get dicey. Here is the rule. In order for me to get difficult child these services he HAS to have Medicaid. That is the payment that OPWDD will
    accept for services which include respite, translational comment supports, employment training, assistance with living etc.

    In NYS if one is under 18 and living at home you have to apply for a Medicaid waiver. After 18 but before 21 you have to go to social security and apply for supplemental disability which then gets you Medicaid. This is because evidently in NYS it is the responsibility of the parents to insure their child to age 21, or at least that is what I was told. So I started the process of applying with the agency. They wrote up an ISP or individual service plan document to submit for the application. This was based on several lengthy questionnaires and interviews with desired outcomes that we came up with. Ours included difficult child having an outcome of being safe in the community rather than in our home, possibly taking a course at a community college, having a job and receiving medical services.

    Now we had to stop the process because difficult child had a trust account set up by his maternal grandparents when he was born and because it has over $2000 in it he would be ineligible for Medicaid. We are in the process of working with a lawyer to have this $$ moved to a special needs or supplemental trust so medicaid cannot deny him based on income.

    So now we are in a waiting game for applying. However with more violent recent events I called my contact at the agency and asked her how soon after he turned 18 could the CSS supports be put into place. I guess after he gets approved from SSDI and Medicaid which takes 30 days then the CSS could take up to 9-12 months. EEK! I explained where we were safety wise and because of violence and the fact that while difficult child can stay temporarily at Bio moms in IN he will essentially be homeless July 1st. She said this puts him in Tier 1 status and there may be a way for us to get the same supports from NYS without them getting reimbursed by Medicaid and then they can work on the CSS in the meantime.

    So this is where we are right now and the supports that hopefully difficult child will receive in July or within a year.

    I hope his answers some questions on the process. Anyone can contact me directly should they have any other questions. I have learned a lot!
  2. buddy

    buddy New Member

    You rocked that out big time! Great job!!!

    In some states, parents can buy into Medicaid and or use TEFRA or Katie Beckett kinds of programs.
  3. Winnielg

    Winnielg New Member

    Good to know about the Medicaid. I had wondered about that!