We’re in NJ. Our disabled 30 yr old DD lives as a renter in a private home about 30 minutes from us. The home is owned by the parents of one of her roommates who also is disabled. Their is a third roommate as well, and a live in residential side who assists our daughter with ADLs at night, gets her on her bus to work program, supervises her meds, etc
There is also support staff that she hires with her state division budget that shes had since graduating high school at 21.
We know how fortunate she and we are.
Her rent is subsidized via state funded housing voucher now, previously we paid out of pocket.
Her support coordinator pushed me to fight for one of the limited number of vouchers when both her dad and I were seriously Iill a few years ago.
It was a massive paperwork fight that lasted a year. We really didnt know if we could continue to be able to support her in our house. Luckily, things are better for us health wise but we’re both mid 60s and not getting younger.
I wish everyone the best.
I think housing is the most difficult piece.
Our son has over $8,500 in his ABLE account, 100% from money saved from Social Security benefits.
When he went through a recent review by our state, however, the employee had not heard of the accounts!!! I had to explain that the funds DO NOT COUNT as assets. I gave him documentation.
I put in a call to the state’s consumer assistance phone number to ask them to get the word out to state employees, but of course I didn’t hear back.
The staff at my son’s apartment just informed us that they can’t give him rides to work any longer. I looked into it before, and Uber plus the decrease in SS benefits due to his working would wipe out all his earnings (only four hours a week). Ugh. Transportation services are possible only if Medicaid reimburses, and that doesn’t happen for jobs. So shortsighted. This job means everything to our son and helps him stay stable. His last hospital stay cost the taxpayers over $100,000. That would pay for a few rides.
@MaineLonghorn…my H volunteers for a group called Carepool…he drives people to doctors appointments, the grrocery store free of charge. I’m wondering if maybe there might be a similar organization in your area? May not be a permanent solution, but could help in the interim?
My daughter has high functioning autism. She is extremely bright. Her anxiety is crippling and her sensory challenges are so severe that she can barely tolerate any noise. It’s been an adventure getting her to senior year of high school We have had to resort to a one on one school because the noise and chaos of a traditional school was overwhelming…she spent most days in the fetal position in the nurses office. She also has a pain disorder and for several years could barely walk or use her hands…its in remission now but she’ll likely live with chronic pain for the rest of her life. I am on call 24/7 being the only person who can calm her down when she is melting down. My heart is so broken for her. Honestly I can’t even imagine how she will get through college or even one class at community college. I am fairly certain she will not be able to live independently. I don’t even know where to start.
@Veryapparent does your daughter see a therapist? I would suggest getting her one if she doesn’t. The therapist can help her cultivate coping skills, can refer her to services that may be available in your state and can suggest a good doctor, maybe a psych doc or maybe a family doc that can prescribe meds for the anxiety and whatever else.
@gosmom, that’s interesting. I need to do some digging. I would think his case manager or housing staff would know about possibilities, but apparently not! As always, it’s the parents who have to come up with help.
@Veryapparent, hugs! It sounds like you might want to get her qualified for state/federal aid when she turns 18. There are definitely resources out there - my son lives in supported housing. Your state chapter of NAMI might be able to give you an idea as to where to start. Hang in there. If you look around, you’ll probably find other parents who are in the same boat.
@bajamm
Thank you. Yes she does take some meds but tends to have pretty adverse side effects so limited to low doses. She does see a therapist but maybe it is time for a change because I don’t feel like I am getting any direction.
I found a wheelchair services company that will provide transportation even if you don’t need a wheelchair. They charge only $2/mile, so my son’s round-trip cost will be $12. We’ll cover some of the cost for him. We can schedule rides regularly and they will send me the bill, so he won’t have to worry about details. Whew, such a relief! It took a lot of phone calls to find the transportation. No wonder so many people are homeless - it is extremely difficult to get services.
Our 30 yr old disabled daughter works about 5 hr a day, 4 days a week.
She lives in supported housing that does have staff for some rides to food shopping., recreational activities.
She takes Access Link for work. It’s for disabled people in nj that cannot use standard public transportation. It costs her $9 /day for door to door transport in a small bus. AcessLink is run by NJ Transit.
Check to see if your state runs something similar.
A few times year, our Dv of Vocational Rehab reimburses her for her work related bus fares.
One of mine, who has a serious psych. diagnosis (10 years now), takes classes online in an “adult learner program” (aka degree completion, continuing ed, etc.) that allows one or two classes at a time. One term equals two semesters of online classes so she takes one at a time, but two per term.
@compmom, that’s cool. I wonder if my son would be interested in that. He finished enough of college to be considered a junior. It would be so awesome for him to finish.
Depending on his learning style, there are the more mainstream online courses at state U’s and schools like Lesley (great program). And at Lesley CLEP’s and community college classes go in the pot so to speak: they really help you make progress any way you can.
Another different kind of path is Union Institute and University, as an example of an alternative.
Also Lesley has a “Holistic Psychology” program and an “Expressive Arts” program which might interest some of our kids.
Hope you son can do some school his way and finish eventually ML!
Our rural county’s Council on Aging has a van service that is free to those over 60. Under 60, it’s $2 anywhere in the city and $4 anywhere in the county. One does not have to be disabled. They will even transport up to three paper bag size of groceries.
Another idea for those in Amish areas is to ask for their driver contact info. In my area, the drivers often have elongated vans and charge $1/loaded mile.
D has just graduated college and is moving to a far away city. She has a license but her spatial awareness is growing much worse and she’s increasingly timid to drive, especially in a city. Transportation issues worry me, and I hope their public transportation is as good as reported.
I looked into it before, and Uber plus the decrease in SS benefits due to his working would wipe out all his earnings (only four hours a week). Ugh. Transportation services are possible only if Medicaid reimburses, and that doesn’t happen for jobs. So shortsighted. This job means everything to our son and helps him stay stable. His last hospital stay cost the taxpayers over $100,000. That would pay for a few rides.