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Who Will Care For My Special Needs Adult Child?

Sally Abrahms

Most of us think about taking care of our aging parents or spouse when they’re older, and not our kids. They’re grownups, right? But when you have a special needs adult child that care never stops. Nor does the worry. Ask any of the more than 39.8 million Americans providing care for an adult, usually a loved one, age 18+ with a disability or illness. You will hear: What happens when I am no longer able to care for my child? Who will care for them?

“I think about it all the time. I am not going to live forever,” says Janie Rogoff, 63, whose 31- year old daughter Marissa has cognitive and physical disabilities.

These haunting questions have spawned a push from parents in their 40s, 50s, 60s and 70s to find creative living solutions for adult children with developmental and intellectual disabilities now, while they’re still able.

The demand for new housing models has never been greater. The first wave of young men and women diagnosed with autism as young children have come of age, with thousands more behind. By 2023, 500,000 million autistic kids will become adults.

Autism may be the largest development and intellectually disabled special needs group, but there is also Cerebral Palsy, Fragile X syndrome and Downs. Medical interventions have led to longer life expectancies. Longevity, of course, is expensive.

Support Subsides for Young Adults

Until they turn age 22, schools are mandated to try to meet the needs of a child with a disability. If a school system can’t meet those needs, it must pay for services elsewhere, whether in a residential or day setting. But after that, families are on their own (called “aging out”) to figure out a suitable arrangement.

For those who can’t afford to pay privately or obtain enough government monies, the social interaction and programs (i.e. vocational training, counseling and learning) they are used to may go away—or at least shrink significantly. That means many young adults in special residential settings have to move back with Mom or Dad. It can be isolating.

A 2012 American Academy of Pediatrics study found that two years after high school, nearly 40 percent with autism received no services.

For state-funded group homes, the waiting list can be years. Parents often have little control over where their adult child is placed, or who the other residents will be.

The services available for this group, and what they cost, vary. In general, the range is likely to be $40,000 to $75,000 yearly for rent, services and socialization, but it can be far more.

“It all boils down to finances and advocacy,” says Rogoff. “It takes money and determination and is like a full-time job. My husband and I have received appropriate services for our daughter because we had the wherewithal to identify her areas of need and make sure they were being met. What about a single mother who doesn’t have the time, money or know-how?”

Marissa lives in a condo by herself on Cape Cod in Massachusetts close to the special residential program at the Riverview School she attended from ages 18 to 23. The state picked up the bill at Riverview (until age 22) and today she receives minimal state and federal monies. Her parents have contracted with an organization that provides 24/hour emergency care and case management, including coaching, budgeting and social opportunities.

Marissa works part-time at a local restaurant, takes transportation for the disabled or a cab or goes to the movies with friends. She is allowed to use the microwave, but not the oven or stove.

“Marissa has exceeded our expectations with her ability to live a very independent life,” says Rogoff, “although we know that she will always need supervision and supports to navigate that life.”

Other Housing Arrangements

Most young adults with development and intellectual disabilities never move out of their homes because it’s too expensive. For those who do, there are various living options. The most common are:

  • At home with or without professional help
  • In a group home that has round the clock supervision
  • In a special needs community in an apartment by themselves or with a roommate

Some young adults get funding from the state/government. But most don’t. Increasingly, parents with means are getting together and pooling their resources to create their own living arrangements. Rebecca Fishman and her sister, both from Chicago, each has a son with Fragile X.

After they aged out of their residential school in another state, they moved home. As Fishman puts it, “in Illinois you practically have to ‘win the lottery’ to get funding from the state!”

Fishman and her sister wanted their sons to live near them but on their own.

Five years ago, their families bought a small apartment building, gutted it and turned it into a place for their adult children and others.

There are eight units (nine young adults with developmental or cognitive issues, one apartment for a tenant without these issues), a large kitchen for communal meals, a work out room, kitchen and TV room. The cost: $55,000-$70,000 a year to live there.

“They won’t get married and build their own family, so we are trying to build a family for them,” says Fishman. But also with them. Because “their whole lives have been parents making choices for them,” as Fishman puts it, the sisters made sure that their sons were involved in the planning as much as they could be.

Fishman traveled around the country looking at service organizations to replicate. Each of the young adults who live there has deep programming or a part-time job.

They also have tasks in their group home, whether it is helping with grocery shopping, cooking or in the dining room. Fishman says she hears the children tell her “I love my home! What more can a parent dream of?” she asks,

Intergenerational Communities for Autistic Adults

Communities that offer housing and services for young adults with autism are in the planning stages.

One, OHANA Valley in Spokane, Washington, will have 30 special needs young adults and be part of a larger master community. And, in Maryland, the Howard County Autism Housing Initiative is designing an intergenerational, mixed income community for men and women with disabilities, families, and older adults (who will have a sense of community and purpose themselves).

Parents have become proactive and determined that their young adult children have self-determination. No doubt, housing options for developmentally and intellectually disabled adults will continue to grow–and those adults will thrive.

What’s Next:

A New Kind of Intergenerational Living

17 Responses to "Who Will Care For My Special Needs Adult Child?"

  • Extra Mile Staff | October 15, 2019 at 5:34 pm

    Hello, Megan. We're glad you found this article helpful.

  • Megan Adler | October 14, 2019 at 1:42 pm

    I appreciate you helping me learn more about individuals living with development challenges and what they can face as adults with special needs. I have a special needs brother and we want him to live his life to the fullest. We are thinking about taking him to a disabled living facility so he can be independent but also be taken care of and be safe. https://gbc.la/services/

  • Larisa Maksimov | October 6, 2019 at 5:15 pm

    Hi, I have 23 year old wheelchair bound son , very smart and knows whats happenening around him , Thank gd very verbal , but it is getting really hard to care for him at home, we just dont know what to do with him. He sais he wants to move out and be independent however thats impossible he needs 1:1 assistance for everything . What should we do ? We are physically unable to care for him anymore , and feel terrible to even consider placing him somewhere but if any one knows a place were it will be safe loving environment why not, he is a young adult now , but were is the big question so as a parent you wont feel guilty letting him go. A BIG PLEA OF ADVISE OR RECOMMENDATIONS will be so helpful!!!

  • SOBRINA STAHNKE | August 13, 2019 at 2:36 am

    Hello caregivers! I have a 50 year old brother who lives in a State facility and he has lived in many group homes throughout his adult life. We have endured many bad experiences and are currently hoping to find something better. I am interested in putting in a home just for him. Does anyone have experience with putting in a home that isn't actually a group home? I need ideas and advice. Thank you so much.

  • Carolyn | August 12, 2019 at 12:51 am

    I have a 24-year old daughter who is totally blind and has cognitive and social delays. She is a full time college student which is great but I am finding it more and more difficult to have her completely dependent on me to get out of the apartment and I am her only social outlet. I don’t know how much longer I can be a parent to a 12 year old (on the developmental scale) without losing my marbles. I do this completely by myself with an ex husband who has minimal involvement.

  • Darlene | July 6, 2019 at 9:37 pm

    My 40 year old brother has cerebral palsy along with some behavioral problems. My mom raised him to be independent and not let his disability hold him back. Well as he’s gotten older the problems began to increase. He used to live independently in a facility with normal care takers but he also had many violent episodes over many years, causing him to get kicked out. He is now living with my 63 year old mother in a house built in 1940. He has been having increasingly more violent tantrums causing her to sit on him to restrain him. Clearly this is not a healthy thing for him or my mom. He needs to be put in a home where he can be monitored and where they can manage his behavior better. I know I’ve jumped around a lot here but I’m looking for help. His counselors and social workers are not responding and probably have no sense of urgency since he is at home. I can’t continue to see my mom love this way and risk hurting herself

  • Extra Mile Staff | May 31, 2019 at 12:31 pm

    Thank you for reading, Sara!

  • Sara Wilson | May 31, 2019 at 9:33 am

    A Grownup child with developmental disabilities is always a matter of worry for the parents. Most of the times they worry about the future of their loving one. I appreciate some good communities just like Sunshine Communities, who support people with developmental disabilities, who just want to live on their own terms. So, parents can contact such good communities to take care of their child. Hope this information will help!! Thanks!!

  • Extra Mile Staff | May 30, 2019 at 3:05 pm

    Thank you Kathy for this great information for our readers.

  • Kathy Vecchioni | May 30, 2019 at 11:43 am

    By Their Side is a family funded non profit in Maryland formed by parents in 1965 to assure their sons and daughters with I/DD would have an advocate after the parents were gone, and the siblings would have an ally. While States operate differently, Maryland legislature funds new residential services for people in crisis each year e.g. elderly caregiver unable to continue care due to health reasons. These services are annualized so funding continues. Parents may establish a Special Needs Trust -even a small pooled Trust helps- funded by their Will, to assure their relative has resources to meet their future needs (dental, vacation, quality of life purchases, etc) without jeopardizing public benefits. An ABLE account, now available nationally, is another option for savings. Some parents leave the family home in the Trust so their relative can remain with the support of a State funded residential agency after parents are gone. Family members can interview and select the residential support agency they feel will best meet their relative's needs and whose philosophy best matches their wishes e.g. that their relative be supported to live a full life that includes the activities and interests important to him or her. In Maryland, if an agency does not work out, the person and their family (or advocate) can select another and transfer their State funding. So, a working sibling who cannot carve out time to serve as caregiver instead visits as a sibling, monitors, and advocates. (In Maryland, vocational day time services begin upon transition from school.) Visit www.bytheirside.org for future planning resources, links, and things to consider beyond a Special Needs Trust. While By Their Side serves only Maryland, the resource links are national.

  • 5 | May 28, 2019 at 9:32 am

    1

  • Dottie Hager | May 27, 2019 at 7:47 pm

    I’m having the same feelings and concerns and my special needs son is 15 and his siblings are 17 and 20 and I don’t want them to have to care for him when I’m gone ! How and what did y’all end up doing and what should I consider.

  • Extra Mile Staff | January 2, 2019 at 12:46 pm

    Sally, thank you for sharing your experience. Your sister is lucky to have you and the rest of your family supporting her. Happy New Year!

  • Sally | December 23, 2018 at 2:36 am

    Hi. i have a special needs sister. She is full needs,although she can speak and kind of feed herself, that's all she can do. I am one of 6 children and she is the youngest. My father passed away 15 years ago, and i promised him before he passed that i would care for my sister and never put her into care. My mum and sister moved in with my husband and youngest child 10 years ago. Mum was diagnosed with dementia in 2013 and passed away last year. I still care for my sister and have just started putting her into respite care for the odd weekend , which she hates. My other sister also cares for her in the weekend to gv me a break, but that means she never has a break bc she works full time. We are both struggling emotionally with her going to respite care, but I think it's important for us to hv a break, otherwise we'll crack and then she'll end up in full time care. I love looking after my sister and never think of her as a burden , she can def be a pain in the butt and she does my head in at times. I sometimes think she's developed dementia too bc she can be really dopey. She has so many health issues, although she is now 50 years old, i don't think she is going to be collecting her old age pension but who knows. Because she has special needs, she does not have a mean bone in her body and she has taught me patience and forgiveness. Sorry for the long post , it saddens me when ppl praise me for my care, or refer to our elderly or dependent family members as "a burden". Never a burden, always a blessing:)

  • Extra Mile Staff | November 13, 2018 at 3:13 pm

    Deanna- thank you for sharing your family's story with us. Your experience and future thinking will help others when they are making these difficult decisions too.

  • Deanna Graham | November 12, 2018 at 4:01 pm

    Judy L Rysdam - My husband and I are of opposing views on this. Our son is only 15 right now, but I want to start thinking about down the road. I don't want our other kids (13 & 19) to be burdened with caring for their brother. I want them to be free to follow their dream wherever it takes them. Their brother is autistic and cognitively impaired. We all truly enjoy having him with us now. He loves his siblings, and they love him. He does enjoy watching other people, but he doesn't interact with them. He is able to follow simple directions. My husband wants him home with us. I think when he's older we should have him involved with adult daycare type programs. I think eventually having him spend a few nights a month at a group home to start with would be good. My biggest worry is if something happens to both of us, he would be ripped from everything he knows. If we introduce him to care and housing early, he should transition easier when the time. comes. It's a hard decision. Both of us only want him to be happy and well cared for. I don't think I would call that selfish on either of our parts.

  • Judy L Rysdam | September 23, 2018 at 4:46 pm

    is it selfish on the part of the parent to want to keep their adult down syndrome and autist child home with them for as long as possible? what is the best for and adult child with this condition.

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