@MaineLonghorn , we’re in a similar place with our DD.
There have been enormous changes for her (and us) this past year yet the “doing something productive” remains elusive.
Our focus last few years has been finding appropriate sup ported housing for her now so she could lead a more independent life than the one she had in our home.
The first attempt last year began with great promise but disintegrated by end of lease due to roommate squabbles, lack of adequate staffing and issues w the lovely but old house that needed some large repairs.
Since june, she has been sharing a newer single family home with two other young woman with special needs. The home is owned by the parents of one of the roommates; there is also a live in aide for security overnight.
After 2 years, our DD has obtained a housing subsidy from the state that helps with her rent.
She gets SSI as works a few hours a week also.
We’ve also opened an ABLE acct to fund othe expenses. She has friends, a downtown she can walk to, a town pool, weekend peer activities.
She is so happy and we trust the setting is safe.
Still, we haven’t quite given up on wanting more for her. Working on it though.
We just had a discussion about this with D’s new MD today. He said he’d write a letter in support for a disability application as desired. D is only able to be independent because we can afford To pay all her expenses. She does try to help some folks with projects but has never had more than sporadic part-time jobs with a few hours/week.
D doesn’t qualify for disability under SS because she’s not worked enough quarters and was not declared disabled at a young enough age. She’s never had disability insurance and is uninsurable.
Glad to hear your kids are doing OK mainelonghorm and musicmom. Sounds like your daughter is in a tough spot, HImom, as to SSI. I knew you had to work a certain amount to collect, but thought with disability that would be different. Hope things keep moving in a positive direction for all of them.
Thanks, mom2and. Your response made me remember how far our DD has come and to enjoy her successes.
That’s something I forget to do in the midst of the battle with state agencies, funding sources.
The staff at my son’s apartment called - they are concerned about him. When I relayed their observations to his doctor, the doctor called me back immediately (I love this guy). He said it sounds as if S is warming up to mania, which is pretty serious in his case. We took S out to dinner last night, and he was quite social. That would normally be considered a good thing, but it’s not in his case - more evidence of mania. I really, really hate this disease.
The good news is that S reacted well to the increase in meds his doctor ordered. He told us he trusts the doctor and will do whatever he suggests. We are very lucky in this regard - he understands he’s ill and has total faith in his psychiatrist.
I can’t believe I stumbled across this thread. New to cc, and getting informed for our youngest. We have 3 children, the two oldest have chromosonal deletion syndrome, with significant developmental disabilities. Both have transitioned to adult services over the past 2 years, and are attending a day hab program 5 hours a day. Wish we could look into supportive housing but too many needs. The State has also put the kobosh on building new group homes so demand is incredibly high and spots very few. Would also very much like for them to be together. Hoping things turn around on that front when the time comes. Our D19 has been through a lot in her 16 years, and had to sacrafice a lot. Not a typical childhood, but she is a caring and better person for it! And now wants to be a PT and work with people with special needs!
OK, I need to see if there is anyone who can help me! Someone in this thread posted awhile back about the new 529 accounts under the ABLE Act - money in these accounts aren’t counted as a person’s assets for SS purposes (with restrictions).
So I started an account for my son and it’s doing well. NOW I find out that these assets might not be protected for the purposes of medical insurance (Maine Care, which is Medicaid, I guess?). It’s unbelievable - what good does this act do if people are disabled and need medical care? I wanted to see if anyone here knows about the subject. Literally NOBODY I talk to in Maine has heard of the ABLE Act, and I’ve called quite a few people.
@gosmom, thank you! I just sent an email to the ABLE National Resource Center.
The question seems to be if Maine is required to consider the funds protected when considering a person’s eligibility for MaineCare. I think the state is, but I would like to find an official statement.
Hi ML-
I’m one that has promoted ABLE accounts on this thread. We have successfully funded our daughters rent using her ABLE money without jeopardizing her SSI or Medicaid.
We are in NJ. Medicaid is a state program I think so not sure if the same in Maine.
During her recent re-eval at the SSA office, I handed the SS rep a copy of their POMS from their website regarding ABLE accounts. https://secure.ssa.gov/poms.nsf/lnx/0501130740
She asked for time to read thru the info.
After that, she subtracted our ABLE contributions which would have eliminated her SSI and Medicaid.
Perhaps there is info there that can help your situation for your son.
Best of luck. PM if I can answer anything further.
this is great news for those with disabilities nearing the legal age of adulthood…allowing parents to save for their kids, much like a 529 plan…without jeopardizing SSI"
Gotta say…dang, here we are in 2018 and some states still haven’t gotten off the ground on this, and sadly, as illustrated by @MaineLonghorn post, there is still so little clear cut info…and many officials who should be in the know, clearly are not.
@musicmom, @gosmom, thanks for your input. I went off on vacation having not heard back from any state of Maine contacts. I really should have submitted my son’s form before we left, because the deadline is tomorrow. While we were gone, though, someone managed to get hold of a DHHS employee who stated the funds in the ABLE account won’t count against our son for eligibility. Whew! I decided to pick up my son tomorrow and turn the form in at the local DHHS office. I want to SHOW an employee the email I received, because OTHER supposedly knowledgeable people told me the funds would NOT be protected! Really sad. Even the person staffing the NAMI Maine helpline did not know about ABLE accounts! I’m going to try to change the situation in our state, at least.
I printed out the info from the SS site and will bring it with me. I have to admit I’m still nervous!
@MaineLonghorn,
Like you, I’m floored at the seemingly informed folk that DON’T know a thing about ABLE accounts. It’s really unfortunate.
I think you’ll be fine if you bring hard copies of documentation. It worked perfectly for me here in NJ. The social security rep seemed happy for me, to educate her.
I’ve made ABLE promotion a personal quest…I’ll rattle off my sales pitch to anone who will listen.
And no, I’m not getting a commission!
@musicmom, thanks! I’ve printed out the DHHS employee’s email as well as the organizational chart showing his position as Constituent Services Coordinator (first I’ve heard of that position, ha). Praying for a helpful employee when we show up at the DHHS office this afternoon.
Whew, the meeting went well. I gave the woman the printouts, showing her the email from the DHHS employee. She rolled her eyes and said, “We’re always the last to hear anything!” She asked a secretary to make two copies of what I brought and said she will inform the entire office. She asked my son some questions and said he doesn’t have to have a phone interview now. She said he’s set until next year! So relieved. Now I will start advertising the ABLE accounts!
It’s a rollercoaster! I got a call from S’s housing staff that he was hospitalized yesterday. Don’t know much except that he dumped his meds in the toilet. Sigh. It’s been three years since his last hospitalization.
Well, at least he signed a release so the hospital can talk to us. He’s doing “OK,” according to his nurse. But he specifically requested “no visitors,” so there’s no point in driving to the hospital to see him.
One interesting improvement since his last hospitalization three years ago: There is now a social worker assigned to be a “Family Navigator.” Her job is to support the family members! What a concept! She said she can chase down people if we’re having difficulty getting answers. We can call her anytime. I’m really pleased with this development.
I really, really hate this disease.