Intellectual Disability & Developmental Delay
Parent Q&A
Archived Q&A and Reviews
- Caring for 36yo sister with developmental disability
- Care facility for 38yo brother with low intellectual functioning
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 with low intellectual functioning
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
It completely depends on what the actual diagnosis is. FWIW in the community we generally use the term 'neurodiverse' as opposed to 'intellectual disability,' which is pretty outdated (and potentially derogatory). Our student is ND and has multiple discrete diagnoses, among them dyslexia and dyscalculia. In our case, Lindamood Bell was a waste of time and (much) money - but others here have found it helpful for their kids, again it all depends on the specifics of the diagnosis. If you had the school district run the testing on your child and this label was the result, I would highly recommend an outside evaluation with a competent educational psychologist to decipher exactly what areas are in need of remediation. It may be that an educational therapist can help within the regular school setting. There are several recent recommendations in the archives for schools that support neurodiverse students. Good luck!
Thank you for your feedback. Much appreciated. The diagnosis/term is based on independent testing. The school testing had it as ‘other health impairment’.