Caring for a Disabled Adult

Parent Q&A

  • Care Home For Autistic Adult?

    (3 replies)

    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.

    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!  http://costanoacommons.org/

    Good luck to your friend.

    This might be a place to start: http://kavere.com/  Also, I've heard good things about Camphill. Check out http://www.living-unlimited.org/adult-living-communities/      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. 

    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.

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Questions

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 www.napanet.net/business/personal/ASA/ASA.html. Susan

If you have more questions after you've done these things, please feel free to email me. gibbs1 AT uclink4.berkeley.edu


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