@psych_ , Thanks for asking! It’s been 2 years since I posted here and I’ve learned a great deal in that time. I’m so grateful for the recommendation to seek out information from NAMI.org, they were the single most helpful source of information on this journey.
My daughter is doing well, considering what she has endured. She has not relapsed in two years and tapered off of her antipsychotic medication six months ago. The psychiatrist has yet to suggest a diagnosis for her, as she doesn’t quite fit any DSM label. Looking back, her symptoms started after she was prescribed Adderall so we suspect it may have contributed to the psychosis.
She has worked in a temporary part-time job at a public school for the past year and loves it. She has plans to attend graduate school for a Master’s in clinical counseling but it’s been difficult to account for the ‘lost year’ after her psychotic episode. She does not want to mention her experience on applications. One ray of light is that California is considering a bill to allow peer counselors to acquire certification. This would allow reimbursement through MediCal, and hopefully open up more jobs for people with past mental health and substance abuse challenges.
Maybe other parents already know this, but I thought I would share. If you have an adult child who was certified as disabled before the age of 22, he or she is entitled to receive a total of 75% of your SS monthly benefits! That means our son will get at least twice as he’s getting now, once DH starts collecting at age 70 (five years from now).
@momsquad - thank you so much for sharing that article! DH and I had long discussion after reading…our DS has been on meds since age 7. Every time he tapers off, symptoms return and then he’s on another cocktail. Stable now at almost 27 but can only work PT, lives w/ us, and has never had a relationship. Lots to think about.
BTW - he had a psychotic break after 2 days on adderall. Fortunately resolved quickly once adderall was stopped.
We moved from Iowa to California about 15 months ago for H’s job. Our son came with us, he was 19 at the time and is now almost 21. He is on the autism scale, though is higher functioning than many.
It has taken this long for us to really settle into services for him, though we seem to have finally gotten going. He now has a job coach through Vocational Rehabilitation that has been sending him to several interviews a week. We also met with a regional center case manager yesterday who will get him a bus pass, expand what the voc rehab person can do with jobs and employment and she will also try to get independent living skills support for him.
My question is should we try to get him on disability? We had applied in Iowa when he was a minor, were denied and appealed several times, hired a lawyer and saw a judge who ultimately denied it. The lawyer did not get paid since we did not win.
The case manager yesterday suggested trying again as an adult this time. She did say we would probably be turned down the first time again.
My main concern is that he has shown that he can sort of handle community college classes. He has just 14 or so hours to finish an AAS degree. That is different from an AA degree, the extra A stands for applied and the math/science requirements are a lot easier. He barely has a 2.0 average with several D minuses and one F on his transcript. His having the 2.0ish GPA at CC is one main reason his disability was denied in Iowa.
He had to quit CC to move with us and has not moved towards figuring out how to finish it here.
Are there doctors who state in their records and will testify that your son is disabled? That would help, I believe. Having him declared disabled can help him get and keep some income and also medical coverage under Medicare. If you can review why the judge and decision went against your son and how to convince them that your son is indeed disabled, there seems to be not much to lose.
@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.
@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.
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.
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…
@MaineLonghorn thanks! And, can you get guardianship of your son so that your signature is valid until the guardianship is revoked for whatever reason?
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.
@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.
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!
@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.
Well, my S was offered a job at a big box store this week. (Can I say where, not sure?) He received an email this morning that he passed the back ground check and so now he just needs to be scheduled for orientation.
It is part time, 28-32 hours a week, just under the full time benefits hours (which I think happens at 34 hours a week).
If he can prove himself and handle it maybe he can move to full time.
I may put applying for disability on hold for a bit.
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 ?
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.
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.
