I will be thinking of you and your son. I try to take things day by day and look for the small victories. Right now, my son is stable and relatively happy. That’s all I ask for!
My Banished Brother
My family sent him away because he had Down syndrome, but he created another family for himself in his group home.
http://well.blogs.nytimes.com/2016/04/01/my-banished-brother/
Have been researching possible supported housing options in our community for our intellectually disabled daughter. As any parent who has tried this exercises knows, it’s terribly frustrating.
Limited funding, poor options, strict eligibility for parents of applicant to be considered…it’s become my second fulltime job, really.
By chance, a friend mentioned a new group developing housing in my own town no less, who was looking for a last roommate to fill out a home, with live in support. We’re following up quickly but so are several others so not a certainly at all. But a glimmer of hope.
Wish us luck!
Good luck, @musicmom! My son is still doing very well in his apartment that has staff in the building 24/7. He has a roommate, but unfortunately the man had a relapse and was hospitalized. I was worried about how my son would do by himself, but he seems fine. I’ll pick him up Wednesday for his bi-weekly doctor’s appointment.
I know what you mean about it being a full-time job! Would it be possible to get your daughter a case manager? My son has a pretty good one right now. I still end up doing more than I think I should, but at least she helps.
Good luck!
@MaineLonghorn, wow, glad you’re son is doing well even without the roommates there. That is pretty great.
The living situation we’re hoping for our almost 27 yr old D would be 2 young men, 2 young women, each with own room. One shared bath for men, one for women. Suite on first floor for live in support. It’s about the closest “fit” we’ve seen for her need/independence level. Walk to town shops, hopefully jobs, recreation.
Trying not to get ahead of ourselves.
DH and I always have thought we’d like to help DD transition out of our home before it’s a crisis situation. We’re early 60s so lots of time, right? She also is very social and WANTS a life with peers.
Well, DH just had 2nd cancer surgery and is now onto radiation and chemo. SHOULD turn out OK but who really knows? Kinda is forcing our hand a bit…
And yes ! We have very good support services through NJ state, vocational and developmental and self directed day services and they EACH come with a cAr manager. Then I’M the manager of the case managers!!!
Quarterly and annual meetings and reports…but the services ARE good Except for housing.
@dstark, thank you again for starting this thread almost 2 years ago. I just went back a re-read your 1st post. It’s really heartfelt. You wrote it for me and many others too. I don’t post a whole heck of a lot but I read it all and learn so much.
Ha, I get it! I always wonder what people without moms do! I’m glad your other services are good. I’ll keep my fingers crossed for you! Let us know how it turns out.
My son sat on his glasses. He taped the lenses back in the frames. I thought for sure he would have to buy a new pair, and Medicaid doesn’t cover the cost. But I took him to an optician’s, and the lady was able to fix them. At no charge! There are nice people in the world. My son was SO relieved that I realized he was much more anxious about the glasses than I realized.
Yes! We see that with our daughter as well. We go along thinking she’s kinda oblivious to a bunch of stuff that I’m thinking/hoping she would be paying attention to and then she’ll surprise us. Like, hey mom, did you send in my pool registration yet? Really! So I can tell what’s important to her!
And it’s not seemingly where she’ll be living down the road. Well, that why were trying to help her with it now.
I love that you can still come across some services that really do provide service like your sons optician. We need to clone them.
529A Accounts Let Disabled Save Without Risk to Government Aid
http://www.nytimes.com/2016/05/07/your-money/529a-accounts-let-disabled-save-without-risk-to-government-aid.html
@oldmom4896, see? I got your screen name right. 
I see two problems with the 529a.
One is you may have to repay medicaid.
Two is there is a $100,000 cap. If you exceed this cap, you lose ssi benefits until the account drops below $100,000.
Hmmmm, no word of able accounts yet here in nj.
Good news is our daughter likely will be offered slot in a wonderful new supported housing arrangement in our hometown no less.
Bad news, we need to figure out how to pay for it.
@musicmom, how does the paying work? Do you get any government support?
@dstark, I am still slightly counting my chickens here…
But if this particular placement works out, it will be 4 young adults sharing a single family home with a live in support person.
Each resident/family would pay rental monthly to the non-profit operating the residence.
In our case, our D receives small monthly SSDI check based on her retired dads earnings record, a smaller supplemental SSI check, an even smaller paycheck from a very part time job, and the rest would be from our pocket.
She also receives some support hours for people to help with driving, meal prep, shopping, etc.
We’re hoping to obtain some rental assistance from the state through low income voucher program, but not too optimistic. She’ll probably qualify for some food stamps once not living in our home.
So, it’s a real Hodge podge. The situation has so many positives we are willing to try to pull it together.
Besides, retirement is overrated, right?
The government agency I deal with for my daughter said they won’t help for housing; although my daughter can apply for section 8 housing. There is a 10 year waiting list and I don’t want my daughter living in section 8 housing.
So…although, the agency won’t pay for housing, the agency asks my daughter every year if she would like to move out and live somewhere else.
And I think, "Why are you asking my daughter if she wants to move out when you aren’t going to pay for her housing?
@musicmom, sounds like you found an ideal situation. Good luck!
@at musicmom
Recently, the federal government passed a law called the ABLE Act. The word ABLE is an acronym that stands for Achieving a Better Life Experience. This week the New Jersey Legislature and Governor Christie signed into law a statute that implements the federal ABLE Act in New Jersey. **Starting in October 2016 **, disabled individuals will be able to open ABLE Act accounts.
http://www.eldercarelawyer.com/blog/2016/01/new-jersey-able-act/
@kac425-
THANK YOU for that link!
We’ve been planning to open an ABLE account for our DD since they were created but have held off WAITING for nj to get onboard. I do know that like tuition 529 accounts you can open in any state, we felt we wanted to see the nj version. Glad to see its on its way!
I’m googling and studying now to see if we can deposit her rent $$ into this acct (yes, up to $14k per yr) then have a distribution made to her landlord from the acct. Would the distribution “count” as income to her against her SSI income calculation? Ie decrease her monthly SSI? Or actually her SSDI?
So many questions, so few brain cells left here.
We do have a good special needs attorney who set up her special needs trust…might be time for a visit.
Thanks again.
Maine is not onboard with ABLE yet, but they have set up a committee to look into it. Sigh. It always takes awhile for progress to come here.
I am still waiting since we applied in September for our D to be declared a disabled dependent, which will allow her to remain on H’s family medical insurance plan (even tho she turned 26 last winter). We were told last week that it was approved retroactively, and today in the mail received documentation that listed H’s SS# and his name and address but another person as the insured with a different claim number, different dependent and different birthdate! 8-}
I stared at it and then scanned it and sent it via email with an attachment to the person who filled out the form with the info on how to correct the form and info and whom to fax the corrected form to and the fax #s. Dang–so close yet so far! @-)
When this is approved with the correct paperwork, it will save us having to buy D her own individual policy and will continue to give her excellent insurance coverage while she remains chronically ill and unable to work. It has been a journey trying to get this finalized! :-?? @-) 8-}
Yippee! The woman emailed me this morning and says she made the corrections and faxed the corrected sheet to the insurance carrier. I asked that we be faxed a corrected sheet as well, so we can be sure the proper corrections were made. I can otherwise go to insurer or have insurer fax me the corrected form. Sheesh! 
<:-P =D>
HI has amazingly passed a bill enabling ABLE in our state. I’m so glad we have some very public health aware legislators, especially the house and senate health chairs!