Caring for a Disabled Adult

Parent Q&A

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  • Wheelchair-accessible ADU

    Nov 17, 2021

    I am wondering if anyone knows how to find a contractor who can advise on building a wheelchair-accessible ADU. My sister had a brain injury a few years ago and has been in a nursing facility ever since. There’s no emphasis on recovery there and its depressing as hell. We want to move her but her needs are pretty complicated. (Besides the wheelchair, she would need a care assistant with her the majority of the time plus lifts and other equipment). 

    I want to find out if its feasible to build an ADU for her at my house in Richmond. Does anyone have a recommendation? Or an idea on how to find one?? 

    Contact the Center for Independent Living. They are somewhat disorganized but have useful advice. 

  • Not asking specific legal or medical advice, just any leads or comments or insight that anyone might have.

    30 years ago my brother had a TBA (Traumatic Brain Injury) after being hit head on by a car while walking. It wasn't clear at first if he would survive and he remained in a coma for several weeks. Luckily this happened close to an excellent trauma hospital. The doctors only gave him 50/50 chance of survival and said if he did live, there we should be prepared for him to not regain consciousness, or if he did those with this type of injury usually had serious vision or language deficits - I only write this to indicate the serious nature of TBA. 

    But he was very lucky that as he regained consciousness, he appeared to have little impact. He received therapy for several months but did not need to relearn anything as many do. It seemed like a miracle. 

    Yet he has always had issues, the same issues pre-injury (ADHD, impulse control etc) but after were worse. Now he is 46 and it is clear he can't hold a job, has difficulty getting along with people, anger management issues where he becomes engaged over small things that other people could shrug off etc. He can't maintain relationships but refuses to consider counseling, in fact becomes enraged and scary.

    He lives "independently," received a 2 year degree from a community college but relies on my parents for money and has for decades. It's not that he doesn't have skills, he knows a lot about computers, and he tries to do little gig jobs that he is actually okay at but again for some reason can't manage to make enough money. It is now to the point where he has basically gone through all my parents' money and it has become a burden for the entire family. 

    Both my other sibling and I feel that this brother has become even more angry in the past 10 years and has a real impulse control problem that is getting worse and possibly from that TBA - it would be hard to imagine someone with such a severe head injury to not have some issues.

    So I was wondering if he might be eligible for disability as he can't seem to earn money and my parents no longer have any to give away.

    Is this something anyone has heard of - an old injury which increasingly becomes a problem until someone no longer can manage to be employed? And even tho he appears "normal" from the outside, at least initially, he can't manage regular life? Any tips of what he/we could do for him when he's defensive and difficult? It would be great if he could get some sort of disability but 30 years later, I'm not sure if he would be eligible or how we would prove it. Any thoughts would be appreciated.


    You can look into SSI/SSDI or other services but you would have to better communicate some details about the whole thing & that requires some updated brain scans to back up the claim. The TBI doesn’t help, but the emotional/mental health issues sound traumatic for all involved. No one is perfect but your brother sounds like he is functioning when things go as expected & has outbursts when they don’t.  He’s defensively in “fight” mode & its really because he’s struggling to adjust to external unknowns/changes.  He struggles to self-regulate.  Does he remember things that have upset you & others?  He may disassociate from the moments he is overwhelmed.  Has he had any therapy?

    Good Luck!

    I don’t know the answer to your question about getting disability for an old injury, but I’d highly recommend getting a disability attorney. They are generally paid a percentage from the proceeds of the initial benefit payment (a back payment for the months from initial application till disability is awarded). Almost everyone is denied on the initial application, and the system is very complicated. An attorney can help your brother request his old medical records if they’re still available and advise him about his testimony in the appeal hearing. Social Security will have him go through an evaluation, too, and the attorney will be helpful regarding that. Going through this right now with a family member. Hope it all works out.

    Yes he absolutely can apply and with recent medical documentation would probably get it. Things to remember is that the process can take a very long time but payments will be back dated to when the application was submitted. Considering that he hasn't had steady work he will need to about for SSI not DI because it isn't based on work credits. Hard part in all of this is that he has to be an active participant. I was a social worker and helped people with this type of thing and with patience it will happen.

    Here is my rudimentary understanding of this. If your brother currently has a permanent disability that prevents him from working then it does not matter how long ago his initial injury occurred. I think you are confusing this with temporary disability which is a state benefit that you get while you are recovering from an injury or illness but you intend to return to work. There are two federal benefit programs for permanent disability, SSDI and SSI.  To qualify for SSDI you have to have paid into social security for a certain number of quarters. Your brother's work history may not qualify him. SSI is a needs based benefit and it doesn't matter if you have never worked at all. The hardest part is qualifying, especially for SSI. He has to have the proper medical documentation and do the application process perfectly or it will get rejected, although he can appeal. I would recommend consulting a lawyer who specializes in Social Security Disability. It is worth it to invest up front to secure benefits which could last his entire life and also qualify him for Medicare and food stamps as well as a monthly check.

    Yes, it’s possible. It’s not the date of injury that matters, it’s his current ability to work. That said it’s notoriously hard to get social security disability approved. First step is to see his doctor & see if they will support a disability claim.  Having multiple diagnoses and specialists (eg pcp, neurology, psych) helps. Next get the forms from social security disability. Be patient, expect to be denied and appeal twice. If he’s currently working at all, it will be denied. 

    Try calling Disability Rights CA for more info. They may be able to point you in the right direction incase legal representation will be needed. 

    I dont think it matters when or how he his mental health issues started, i think it matters if he is physically/ mentally capable of working right now. My sister has BPD and always had trouble holding jobs and finally after working with a therapist for years was able to decide that she will not be working anymore and got on disability. I think he just has to apply and have his doctor or therapist say he is unable to work and give his diagnoses and then they decide if he can get disability.


    I think it is possible. You could contact the Department of Rehabilitation however they usually want to help with job retraining I believe. On the Ed Roberts campus /next to Ashby Bart has a lot of disabilty rights advocates like the center for independent living. You could likely find some attorneys who will help him get disability. That was not a straight answer but there are many non-profits that will help with this. It will be a process to get evaluated and show he has a disabilty that limits him.  Hope that is a start if you haven't already found more resources. 


    He should be able to get assistance.

    First, if you haven't already, your brother should see a doctor and get documentation that he is unable to work due to a past TBI. 

    I have a situation which is a little different from yours, but I was able to help get a family member, whose mental health issues were undiagnosed until recently, SSI and Medi-Cal benefits.  My aunt has a college degree, but has never been able to hold a job. For all of her life, she lived with my grandparents who supported her. 

    Once my grandparents passed away, she was left some inheritance money  which she started spending at an alarming speed.  She was also experiencing a lot of anxiety and paranoia. I was able to get her to see a doctor and she was diagnosed with a mental illness.  I was encouraged to contact a special needs attorney to help plan financially for her future. This was very helpful. She was able to receive Medi-Cal, Cal-Fresh and money from SSI. (She hadn't worked long enough to qualify for disability) This made all the difference for her and her quality of life. Our special needs attorney was Julie at Horizon Law in San Ramon. She was wonderful and helped up a lot. BUT, Before you spend money on a special needs attorney, you might try having your brother call the disability office and just see what they say.

    One more thought for the future....if you parents are leaving you and your brother an inheritance (including their house), they might want to talk with a special needs attorney so if won't  affect your brother's government benefits (if he's able to receive them).

    First is he willing to explore that option? Has he been evaluated by a doctor and Psychiatrist re these issues? Medical disability requires a condition that limits patient ability to maintain employment and the bar is usually pretty high even when the pts primary MDs support the claim. The Disability evaluation may use that info but still makes an independent determination based on available data. Sounds like his case requires a validated disabling Neurological or Psychiatric diagnosis whether or not a result of the TBI. Good luck to your brother and family.

    I have heard of such a problem.  My aunt had an aneurysm that she refused to repair at first because she was pregnant.  So she had it repaired but later than optimal.  She was okay for awhile, could drive a car even.  But at some youngish age, she stopped being able to talk well and walk, and they took her to the Mayo Clinic but they couldn't really find anything treatable.  So that is a little bit like your brother.  I'm sorry, and hope he gets disability.

  • Friends of mine have a 21-year old non-verbal seriously autistic son. Due to a serious medical issue with one of them, they're starting to think about care options for him if they're not around.

    They live in Hawaii and have been told that there are no homes for autistic adults there so they're considering moving to the mainland where there are more care options.

    Can anybody recommend a place that provides care for autistic adults? They'll consider anywhere in the country.

    My 17-year old nephew is also seriously autistic (non-verbal) and has lived at an AMAZING facility since he was 10. It's in Chicago and it's called Misericordia (run by Catholic nuns - I know that might sound scary for non-religious types, but they are wonderfully progressive). They provide round-the-clock care for 600 children and adults of varying abilities, and they have everything from physical therapy to art classes. My nephew has even gone on field trips to Wrigley Field. The faculties are beautiful - it's essentially a really nice boarding school for kids (and adults) with special needs. My sister and brother-in-law live in the Chicago area and my nephew stays with them on the weekends, but there are many residents who are there seven days a week. It's not cheap and there is likely a waiting list to get in, but there are financial assistance options. I truly can't imagine a better place for him to be.

    This might be a place to start:  Also, I've heard good things about Camphill. Check out      Living Unlimited is a group that is seeking to develop communities for special needs and DD adults, and their resource page has a lot of information. There are other groups around as well trying to do the same. Best of luck. 

    Hey there Jon. My friend started a residential community farm project in Santa Cruz a couple of years ago. She copied an existing model that she admired and wanted for her own severely disabled son, who would soon be an adult and would need a long-term solution for a good life. He has CP, but there are autistic residents there as well. Maybe look into it; it's certainly a model I would wish for if I had the need!

    Good luck to your friend.

Archived Q&A and Reviews


Caring for 36yo sister with developmental disability

June 2002

I have an adult (36 year old) sister with a developmental disability. She will probably be moving to Northern California later this year so that my husband and I can begin to take more responsibility for her care as my parents age. She lives independently, drives, and has worked at entry-level jobs in the past, although she is not working now. Caring for my sister presents a daunting-- but unavoidable-- challenge for my immediate family. Does anyone out there have experience caring for an disabled adult in that in-between zone (IQ of 80)? Can you tell me about your experiences-- with housing, employment, social services? What has been the impact on your amily and how do you maintain appropriate boundaries? What should I be asking myself as I plan for this change in relationship? Are there web-based or other local community support resources that I should be aware of? Thanks in advance for any advice you can offer.

Someone wanted to know about resources for a sister with a developmental disability who was coming to live here in the Bay Area. I wanted to pass along something that is important for this person to know. If the sister has a diagnosis of a developmental disability (onset prior to age 18) she will be eligible for services through the Regional Center of the East Bay. The person should call RCEB at 510-383-1200 to get information and learn about the many services available through the Regional Center. Thanks. Barbara 

The West County Older Adults Clinic (510) 3743629 has a very good support group for children of aging parents. The social worker provides information and guidance on where to go to get legal advice when dealing with elderly parents. I attended the support group for two sessions and from my experience I can tell you that there is not much you can do about the situation unless you can convince a judge that your father is incompetent. They helped me discover that there is only so much I could do. (April 1999)

Through the Looking Glass (848-1112) and the Center for Independent Living (841-4776) are excellent resources in Berkeley. TLG is specifically for parents with disabilities. CIL has a broader reach. As you may know, Berkeley is a national center for outreach and support for disabled people. Good luck, and I think you are doing a wonderful thing. (April 1999)

Care facility for 38yo brother

April 1998

My brothers current care facility is closing and we are looking to relocate him to the Bay Area. I am looking for any recommendations on live in care facilities, day care programs, job training/placement programs, or tips on where to start our search. He is 38 years old and classified as having low intellectual functioning (borderline retarded) and delayed development. Brian

Adult care: If your brother is eligible for SSI (and/or meets some other eligibility requirements) he may be eligible for an in-home caretaker through In Home Supportive Services (IHSS). Call them at 510-567-8080 for more info. Also there is a pretty nice Adult Day Care program at Summit Hospital in Oakland. It's called Summit Adult Day Health Care. Susan

For Brian's search for recommendations on live in adult care facilities, day care programs, & job training/placement programs - Stepping Stones Growth Center - (510) 568-3331. I worked there for years; they've relocated to San Leandro from Oakland. The director is Monte Cohen. They provide individualized on-the-job training in the real work world and employment services for adults with special needs. They also provide one-on-one independent living skills training. They are not a residential facility. One residential facility I remember is Clausen House in Oakland, they have several houses around Lake Merritt. I haven't heard much about them lately so can't really recommend, but I know they are still in operation. Randi

Do you know about the Regional Center of the East Bay? Your brother sounds like he probably qualifies for their services due to his developmental disability, as long as his disability was not caused by an injury after the age of 18. He should have a case manager there finding him all the appropriate programs (and funding them). They're in Oakland and their phone # is listed. If you have problems with RCEB call Protection and Advocacy at 839-0811. They were created by federal legislation to do legal advocacy for people with developmental disabilities and their families.

You might be interested in Supported Living, a new model to make community inclusion possible for this population? Check out the web page of Allen & Shea in Napa (and the link to CIRCL) at Susan

If you have more questions after you've done these things, please feel free to email me. gibbs1 AT

I suggest the following two places to get info on resources for the adult sibling who is developmentally delayed:

Family Resource Network 510 547-7322 and

Support for Families of Children with Disabilities (yes- they also can give info for adults with disabilities). Their number is 415 469-4518. Dianne