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Parents of disabled kids thread...


Replies to: Parents of disabled kids thread...

  • MaineLonghornMaineLonghorn Super Moderator Posts: 39,358 Super Moderator
    @bajamm, I think it's worth trying. If he's approved before the age of 22 (and I think that means the date you APPLY for him, although I could be wrong), he can collect more benefits once one of his parents begins collecting SS benefits.
  • momsquadmomsquad Registered User Posts: 1,148 Senior Member
    @bajamm I am impressed with the services you have already lined up for him, have you spoken to his case manager about eligibility for SS? Agree with the others, it is a good idea to get an application submitted soon so it is on the record in case you need to appeal. My daughter has a friend in recovery from opioid addiction and he was able to qualify for benefits. His first application was denied, but upon approval 3 months later he was given "back pay" to the time he first submitted an application. He is now in a sober living house and has just landed a job, so I'm not sure how that will affect his benefits.

    I hope your son will be able to take some classes at the local CC and get back on track. California has a great system of community colleges, with many classes available online if that is more manageable.

  • bajammbajamm Registered User Posts: 1,584 Senior Member
    Thanks for the responses! I will plan to fill out the disability app in the next couple of days. @momsquad we just met the case manager from the regional center for the first time on Monday. She thinks we should apply. We'd been working on getting services before then, son's doctor and therapist pointed us down the road in getting started.

    The issue with our new local community college is that it does not have the applied associate degree, just the regular associate degree. I am not sure he can handle the more rigorous academics of the regular AA. I do think that he could maybe take a few classes at this new CC and transfer them back to his old school and could maybe finish in that way. He won't talk with them about it.
  • MaineLonghornMaineLonghorn Super Moderator Posts: 39,358 Super Moderator
    @bajamm, good luck! Keep us posted.

    DHHS called because I signed a form for DS back in February, and they need HIS signature. Um, yes, I wrote on the form that I was signing it because DS was in the hospital. The infuriating part was they stopped his food stamps at the end of February without contacting us. Grr. I hate the system. At least now they're sending me forms so that I can represent DS. It's good for only one year, though, so I'm going to have to stay on top of that. It's endless...
  • bajammbajamm Registered User Posts: 1,584 Senior Member
    @MaineLonghorn thanks! And, can you get guardianship of your son so that your signature is valid until the guardianship is revoked for whatever reason?
  • MaineLonghornMaineLonghorn Super Moderator Posts: 39,358 Super Moderator
    @bajamm We're hesitant to take that step yet because his doctor feels he is still competent. We might have to at some point, though.
  • thedreamydaisythedreamydaisy Registered User Posts: 87 Junior Member
    I am new to this thread. Our middle child is 15 and on the autism spectrum. He is fairly high functioning but with intellectual disabilities (an IQ on the low side of average). He is a Freshman in high school in a certificate of completion program. It is unclear at this point if he will ever live independently.

    I have been posting here in cc as my oldest son will be applying to colleges later this year. It makes me so sad though, that for each milestone my first born goes through, I have to grapple with the fact that my second child won’t do the same. They are only 18 months apart in age but worlds apart in all other respects.

    My autistic son will never drive, won’t graduate high school let alone college, will likely work a minimum wage type job, may never have a relationship, and the list goes on. My biggest fear is what happens when my husband and I are gone. I hope that his older brother and younger sister will watch out for him, but that’s a huge responsibility for them. Group homes scare me but we will hopefully find something good for him before we are gone.

    It’s always good to know we are not alone :)
  • MaineLonghornMaineLonghorn Super Moderator Posts: 39,358 Super Moderator
    @thedreamydaisy, hugs to you. There ARE good housing options out there. My son lives in an apartment with a roommate who has a similar mental illness. There is staff in an upstairs office, 24/7. They give my son meds and take him to work two days a week. Otherwise, he is pretty independent. He's on Social Security and Medicaid. With the introduction of the new 529 ABLE accounts, he has over $8,500 in savings at age 26 - all from money left over from SS each month! I tell him he has more money than his parents and siblings, ha.

    I teach a NAMI (National Alliance on Mental Illness) class for loved ones of people with mental illness. We talk about how parents, in particular, have to go through a real mourning process when they realize their kids won't reach the same milestones as other people their age. It's hard. I just try to reframe it into, "How can DH and I help my son live the most fulfilling life possible?" In other words, instead of asking, "Why me?" ask "What next?" It helps me a lot. :)
  • thedreamydaisythedreamydaisy Registered User Posts: 87 Junior Member
    @MaineLonghorn thank you! I needed to see this today :)

    Our son is a client of our local regional center who will help with things like finding housing, applying for SS when it's time, etc. We would love to see him settled somewhere before we get too old, and then have his siblings watch over his finances (he has no control when it comes to spending on Legos and video games...lol). He loves to talk about when he gets married and has kids, so he doesn't even realize at this point some of his limits, but I guess you never know what will happen. He is still learning at school and that is encouraging. And he has the best temperament (he is loving and has never been violent to himself or others). Truly lots to be thankful for!
  • MaineLonghornMaineLonghorn Super Moderator Posts: 39,358 Super Moderator
    @thedreamydraisy, great that you're looking on the bright side. My son has a wonderful disposition, too. He says, "Love you, Mom!" whenever we talk. He tries to make every day a 10, too.
  • EENYMumEENYMum Registered User Posts: 198 Junior Member
    Anyone else from NY? Just came back from son and daughter's "life plan" meeting. What a complete joke. Wasnt much life discussed but a lot of talk about aligning paperwork w providers most likely so billing can be done appropriately. No place in set-up to dicuss out of home living. Can't even bring it up. NY is basically on crisis housing only right now unless parents financially can swing on their own. Have been trying to work towards change but can not even get anyone to discuss. So frustrating and scary for us and our kids as they need total assistance with ADLs and every day life 😯
  • HImomHImom Registered User Posts: 34,237 Senior Member
    edited May 21
    I think it is tough in most places to find living options for young people as they get older but need a lot of assistance. I know our state has very few to no options as well.
  • MaineLonghornMaineLonghorn Super Moderator Posts: 39,358 Super Moderator
    edited May 21
    We have an organization called Shalom House in the Portland area. They have quite a few residences around the region. Our son lives in a four-unit apartment building. He has a roommate and lives pretty independently , but there is staff on-site 24/7. He goes to the office twice a day to take his meds. They give him a ride to work two days a week.

    He would have been at the bottom of the waiting list, but in 2015 he was hospitalized and told the doctors he would NOT live with us at home anymore. The social worker knew he was serious and advocated for housing for him. We know we're very fortunate.
  • musicmommusicmom Registered User Posts: 2,514 Senior Member
    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.

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