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Special Needs Care for Adult Children: Your Care Options

Here are some tips for finding the right type of special needs caregiver for your adult child.

Image via Getty Images/Westend61

As they reach adulthood, young people with disabilities also reach a crossroads in care. As children, they may have relied on their parents for support -- should that continue now they’re adults? If not, how can they access caregiving resources outside their immediate families?

For many families, this is a difficult conversation. For adults with disabilities, a parent or other relative’s care can be safe and reliable, but some may also find it limiting or even stifling. For parents, letting go of care taking duties may be difficult. They may worry that no one else can care for their child as well as they can. Other parents may worry that they’ll be less able to provide adequate care as they age and develop disabilities of their own. Either side may feel guilty about no longer relying on each other, or scared about trying something new. If families haven’t discussed and planned for this transition, it can seem daunting.

In the end, every family makes their own choices and works out their own compromises -- but it’s important to know how many options exist. Some disabled adults continue to live with their parents, but add professional personal care assistants into the mix to give everyone more flexibility. Some move out on their own, transferring the bulk of their care from family members to professional caregivers. Some find supported living situations, or move in with a roommate who is willing to help out.  Day programs also create a way for developmentally disabled adults to spend time in the community away from their families.

No matter what the solution, disabled adults -- even those with severe disabilities -- can find ways to live fulfilling, rich lives with the right mix of support.
 

Care Options Available

  • Family members. Many adults with disabilities choose to live with family members as their unpaid caregivers. Often, this is the default arrangement: family caregivers are already familiar with their needs, preferences, and routines -- and sharing a home means they’re always available. But it can also create strain in the relationships between family members, especially when this is the only source of care.

  • Personal care professionals. Personal care assistants (PCAs) are the main method by which disabled adults access non-family care. Anything family caregivers do, PCAs can do: bathing, dressing, catheter or ventilator care, or just helping with housekeeping tasks or staying organized. They can be hired through an agency, but many people with disabilities prefer to hire and train individuals directly. For more information, check with your state department of disability services or your local Independent Living Center.

  • Community-based homes and supported living arrangements. For some disabled adults, living in group homes provides independence with support. Caregivers living or working at in these homes provide a range of services, from assistance with medication, to help with decision-making or applying for jobs. Residents usually live communally, sharing activities and meals and providing a built-in social circle.

  • Independent living arrangements. Many people with disabilities live on their own, using PCAs for whatever support they need. Some may only hire PCAs for a few hours a day -- to help with their morning routine, or at mealtimes -- while others manage a stable of PCAs for 24-hour coverage. Sometimes, a roommate or housemate can provide backup support in return for a break on the rent.  

  • Day programs. Young adults with disabilities can attend public school until age 21, and afterwards some find that day programs provide a similar structure and continued education. Providing a variety of educational services, these programs help adults work on life skills while socializing with a community of peers.

  • Long-term care facilities. Most disability advocates and care specialists today view institutional care as the least preferable option. In some situations, individuals who cannot access other kinds of care may be best served by a residential facility, in combination with other kinds of supports. But multiple studies have shown that most people with disabilities fare best in the community and in their own homes.

  • Assistive technology. Many kinds of assistive devices exist, and they provide many options for independence. For people with severe mobility impairments, assistive technology can allow access to computers and the Internet as well as control of their home environment. More information is available here.


Note: The Right To Personal Agency

Every disabled person, regardless of their age or abilities, has the right to as much agency as possible in choosing their living situation and their system of care. Even a person who is nonverbal, or who has intellectual impairments, can make it known whether or not they’re comfortable with their environment and their caregivers. When families discuss care options, the person who needs the care should always lead the discussion, to the extent that they are able.

[RELATED: "A Guide to Family Caregiver Resources"]

Deborah Elbaum, M.D. lives in Massachusetts and has three children.

Comments
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Nov. 3, 2017

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I have a 36 year old special needs son who is an only child. I'm 62 and very ill myself and worry about where he will live when I'm gone. Would love to talk to other parents in the same situation...

Amy
Aug. 5, 2016

Hello everyone I have a daughter who is now 21 years I am her only care giver she is disabled with severe mental retardation dislocated hip , Severe Cerebral palsy , curvature of the spine .she can't walk talk sit up ! I love my daughter so much that I stayed in a very unhealthy relationship for 18 years just to continue taking care of her ! Her father was taking her disability check for 17 years And didn't buy anything for her , he claimed that the money she got was paying her bills she lives with me and her father . I got pregnant for her when I was 15 years old had her when I was 16 her father was 23 years old . I ended up having a adult respiratory failure and ended up in a coma for two weeks and when I woke up she was born and only 22 weeks I was forced to quit school to take care of her because he wouldn't help care of her ! Now he is having affairs and took canceled my cards and changed our accounts making it impossible for me and her to stay here !he talks me the money is his because it's his name on the pay check not mine I know I couldn't handle putting her in a home that would kill me ! Why is it by caring for my disabled child at home saves the state and government a lot of money so why are they helping us I have no problem they can search all the records they want I have no problem saving all the receipts ! So why are we not getting help ! It's like we are being punished for trying to do what's best for children

Cindywhyaskwhy
July 2, 2016

I would like to repeat the exact sentiments that whyaskwhy stated. I wish I could reply directly to her, but of course reaching out for parents with high functioning autistic children is frustrating and difficult!!!!! I love my kid so much, and I can't stand the lack of help we have available to us, I would just assume take care of her forever, but the rest of the world is telling me I've got to do something!! Something?!?!? Find me the appropriate assistance for my daughter and I'm there. I personally have exhausted the search and I'm tired of my kid ending up in the psych hospital because she can't handle the stress of "having to do something" ugh!

Debbie
June 30, 2016

Someone please help us. We are in need of a long term care facility with skilled nursing for my 34 yr old nephew. He has a trachea tube and is severely disabled mentally and physically. He has never talked or walked. He is tube fed and on a special formula which is very expensive as he is allergic to all other formulas. He recently was released from the hospital and the Prague nursing home says they will not accept him back. They claim they are not equipped but we feel it is the money since he is on Medicaid. We have tried various nursing homes all over the state and so far all have declined him.

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