Did you make a copy to keep… just in case??
No, I’m letting go! Worst case, his case manager can take him to the SS office near his apartment.
Does anyone claim their adult child as a dependent? I was surprised to see how stringent the rules are to claim a disabled adult child as a dependent. They are not allowed to earn more than $4000 in a year, even if all other expenses are paid by the parent. Who can survive on $4000/year? We would have to discourage our daughter from even attempting to work part-time if we want to claim her as a dependent and keep her on our employer sponsored health plan beyond age 26. Fortunately, at 23, she will have a few years to see how she fares with a part-time job. She wants to return half-time to her retail job in 2 weeks. I think the benefits of working will outweigh the financial hit from eventually purchasing insurance on the open market, but it’s frustrating that she has to make that choice. If she loses the ability to work after she turns 26, we’re out of luck. The disability application for our employer plan must be submitted before she turns 26. At that point I guess the best option would be to ensure her assets are less than $2000 so she could qualify for disability. It’s tempting to just wait and see how things turn out, but some of the issues require advanced planning. If there is a 5 year ‘look back’ period she needs to start spending down her savings sooner rather than later, or investigate the ABLE account option.
On Monday we go to UCLA for her first meeting with the clinical trial group. She will see a psychiatrist and meet with a peer to peer group. I only go along for this first meeting, she will go by herself on subsequent trips. Fortunately we can take the train into the city, the traffic just keeps getting worse around LA. I know they won’t have any miracles for us, but it will be helpful to have a second opinion and assessment of her needs.
Our D is a disabled dependent and always claimed as a dependent on our tax forms. She has been able to remain on our family plan as a disabled dependent. We applied shortly before she turned 26 but weren’t able to get a decision for 9 nerve-wracking months (fortunately the decision was made retroactive so no gaps in coverage, as she received costly medical care while the decision was pending). We have never applied for SSDI and have no ABLE account for her.
She’s never been able to hold a job or earn anything approaching $4000 in a year and subsists on what we give her solely. She briefly worked a few hours a week in college with a very flexible on-campus employer but earned under $500 total for that year.
Wow, nine months to determine eligibility! I wouldn’t be so worried about keeping our daughter on our health plan if we knew she would be able to obtain coverage through Covered California, but I’m not sure we can count on that being around in 3 years.
We were just grateful that we were finally able to get a decision. The ONLY reason we got a “timely” decision was that I just kept calling and calling and calling. I also got our insurer to help call and call, as well as our US senator’s office. Over the time period, one of the people assigned to our case died and her files were just sitting stagnant on her desk. One reason it was particularly urgent was that D was finally being seen for her disabling condition in a program that she had been on the waitlist for 4 years! I told them I was very concerned that she would be dropped from this crucial program as her coverage situation was ambiguous. Insurer said that some patients had been in limbo for over a year, so start as soon as you can instead of waiting to close to their 26th birthday. You do need to have paperwork and a supportive doctor who will complete a letter or forms or paperwork, whatever is required. You may have to pay an extra fee to the physician.
To be safe, I tried also filing for her to be covered under a “COBRA-like” equivalent for the federal employee dependents, but that application disappeared and we never heard ANYTHING about it once we mailed it off in a timely manner (even now many months later no one knows where it disappeared to).
We wanted D covered because we have never known from the time she was about 10 through today 17 years later, whether she will be able to physically get out of bed or not due to her chronic medical issues. With such unpredictable stamina, it makes planning very problematic. We were fortunate to have supportive physicians.
Glad to hear about the UCLA trial. I recommend asking them about post trial support. What will they recommend going forward. Going from a supported environment to less or no support can be a big problem. Let them help identify what comes next.
That’s a good point Denise. We also need to check whether she will be able to continue on whatever medication she is prescribed after the trial is over. I was told they would continue to provide the long acting injectable but that’s something we want to see in writing. I’m not sure if our HMO would cover it. It’s possible she will just remain on her current oral meds.
I came across this organization that helps adults struggling with serious mental illness. http://clubhouse-intl.org
The concept is very positive, give people a place where they are welcome and receive help with daily living. I hope more of these clubs open in years to come. I can even envision moving to a different city just to have better access to that type of support.
Yes, it was a struggle getting our son on Social Security. I found I had to call and call and call, and there were STILL difficulties. Unbelievable.
We don’t claim our son as a dependent since he is on SS and Medicaid.
We have a clubhouse in our metro area, but S is not interested in going to it, unfortunately.
We have clubhouses in our state as well.
Sorry to barge into the middle of the thread, but does anyone here know what happened to @dstark ? Haven’t seen him in months, and that worries me.
I miss him a lot and hope he’s just busy with grandbaby.
momsquad I PM’ed you
@bajamm, hang in there and tell us how it goes. We applied for SSI in Oct 2013 at age 18-1/2. Feb was the phase you are in- going before an administrative law judge after waiting forever. The verdict? The judge needs time to review and may ask for additional information; then finally last month (March), a ruling in favor, and an interview at the local Social Security office. They asked for proof of rent amounts/payments since October 2013 before they will certify my DC as eligible for SSI (and I thought when the judgment came through, that was the decision!). If DC could gather and deliver the information in the detail they require, DC would not likely be eligible for benefits. Holding my breath that we can navigate our way through this wicket.
Good luck to you , and sending all my good thoughts your way. My child (who did finish an AA) finally was asked to leave university, and now will need to meet the world. We really need that SSI- and by all accounts DC is eligible. I hope it comes through!! We are looking for a new framework and structure.
Exactly!! It’s maddening. I spent so much time - wrote and wrote and wrote. I think they just wanted to get rid of me, ha. But my son could never have completed the process by himself.
Every few years, SS has to review the case. I got a huge packet to fill out for my son. I delegated the task to his case manager, but it still stressed out my son. Stress = psychosis for him, but he seems to have gotten through it OK. Grr.
The posts on this thread of having to fight tooth and nail for SSI benefits make me sooooo angry!
I’m convinced that “they” expect a large percentage of eligible recipients to be unaware, unable to complete or so discouraged that the person never actually receives the funding they SHOULD RECEIVE!
We are fortunate (?) Our DD is intellectually disabled from birth. She is a wonderful 27 year old woman who now lives in supported housing, works part time and has a full life. But without SSI and Medicaid, she would be homeless and lost.
Since her disability is clearly documented as lifelong, the 3 yr review still takes place but it is cursory. She will never “recover” or live without supports.
Would I enjoy it if our DD had higher daily life and vocational abilities? Sure.
Though she is an amazing person exactly as she is, so I should really assume that. 
But I would not enjoy the ongoing fight for benefits.
Hang in, your family members are so lucky to hAve you on their side.
I saw a video on a Facebook page, “Finding Cooper’s Voice,” that I thought was really good. The part that really it home for me:
“There is a ‘last time’ that only parents of special needs kiddos know about. And it is heartbreaking. For years I kept telling myself this was going to be fine. My son was going to be fine. And the joy he has for life typically carries me through the hard times. But somewhere on the journey, we as parents stop dreaming of raising a doctor or a lawyer and start hoping for a good quality of life. And that switch is unbelievably painful and I wasn’t prepared for its impact.”
Ugh, like a stake in my heart! My son spends his time resting, surfing the internet, walking, playing the guitar, and occasionally studying Spanish. That’s it. Mainly resting, I think. I know I should be happy he’s doing so well, but I still have a deep sadness inside.
ML, I just searched “Finding Cooper’s Voice” and read her essay on caregiver depression. Although Cooper’s symptoms are severe, I could relate to many of her feelings.
I have been wondering what your son does during the day, because boredom has been a huge concern for my daughter. Although she participates in group therapy and the peer-to-peer meetings at NAMI, she also wants to restore some sense of normalcy to her life that does not revolve around mental illness. She has returned to work part-time but will need to leave if it becomes too stressful or if they refuse to accommodate her restricted schedule. The unemployment rate for schizophrenics is reported as 90% or more, so it is hard to be optimistic.
Our county seems to have a huge budget for mental health resources, most of which require that someone be on SS disability or a member of a health plan that collaborates with the county. They have skills training, art therapy, classes to become certified as a peer counselor and other resources but nothing in terms of work opportunities. With an unemployment rate of 4.5% there should be SOMETHING that young adults with mental illness can do for a few hours a day to earn money and feel productive. Ideally some of the resources would go to partnering with companies to provide an opportunity for mentally ill adults to work in a sheltered environment. We have work programs for adults with developmental disabilities, but mental health sufferers are not eligible to participate.
Such programs exist in other communities, so once again I am realizing that our retirement plans may need to incorporate the availability of supportive services in prospective communities. Perhaps I need to start a commune for families needing help for both their own age-related disabilities as well as the needs of their dependent adult children.
@momsquad, let us know when your new community opens so we can get on the waitlist!
There is a community in my town for developmentally disabled adults that was started by families. It sounds wonderful, but they don’t take mentally ill people. 
I wish my son had the desire to work, but he doesn’t. We took it as a positive today when he called my husband to tell him he’d found an app to translate lyrics of Spanish songs into English. I hope your daughter’s part-time work goes well for her.
We know we’re fortunate that my son is living in a supported housing situation. I worry about budget cuts, though - the governor keeps cutting reimbursement rates for caregivers.