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.
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The system is so exhausting. Any advice or direction would be appreciated. I have a niece who’s mother & father abandoned her at age 5 leaving my mother to pick up the pieces for our mentally challenged niece & her older brother. My mom is now 70 w/heart issues & my niece who is still dependent on my mom at 24 is becoming overwhelming for my mom to care for at this point in her life. We have tried different recommended avenues to place our niece outside of the home but every road leads to sorry there just isn’t options available for an adult child, you can pay for private care, or you can put her on a 3 year wait list for a state ran group home (which scares us to death). Our niece receives SSI & my mom has a small SS check to live off of. My mom safe guards every penny & they get by but there is very little money leftover each month. I wish I just had the money to place her myself but we aren’t made of money either. I see my mom’s health slowly slipping & I’m concerned for my mom & what happens to my niece when she passes someday. I feel lost as to what steps to take next or where to turn to for real help. If my husband & I were 20 years younger maybe we could take her on but we aren’t so the best next thing is to place her outside of the home.. we just don’t know how to get the help we need. Everything turns out to be a brick wall & the system is exhausting to negotiate.
If anyone has any suggestions or the know how to move us forward we would be so grateful.
Thank you,
G Marks
First, let me say, may "God Bless each & every one of you parents taking care of your disabled children". Thank God for my parents William L. (grandpa) & Inez E. (grandma) Willson from Oklahoma City. Me being a developmentally delayed child born 3 months premature weighing 2 lbs., condition:poor & given up at birth and again after adopted at age 2 years old where I strayed wityh aDOPTIVE FAMILY FOR 4 YEARS UNTIL THEY MOVED TO ANOTHER STATE
I have a 47 year old son with schizophrenia. I am a 70 year old disabled female and I can no longer care for him. He is very difficult to deal with and often combative when it comes to going to doctors, daily grooming, household choirs, and as his payee, he is constantly trying to gain access of his monies. I came home one day and he was on the phone with the FBI, telling them the family is using all his money. He believes everyone else in the house is crazy and there is nothing wrong with him, he does believe he needs to take his monthly shot. I am tired and would like to place him in a home with case management services and someone to help him find a job. I am not sure who to contact or what direction to take for him. Can you please give me some direction placing him?
I commend you people with such foresight. I live in the New York area and wish that my son who has long-term disabilities, would be able to live in a joint community like you have established.
I have a 20-year-old son that's been hospitalized he has to Rex syndrome and other issues with him as well I'm trying to get help for him cuz I don't think I'm capable to take care of him anymore like I need to I'm just trying to find the best thing and better thing for him that he can get help
I have a 50 year old handicapped son I am 80 years old so far we do well together at home he is gentle and kind but cannot walk but dresses himself and mostly rolls around in his chair and is very happy but I worry if anything happens to me and would love to get to know some one with the same and maybe they could live with me in my home since my husband passed I would worry less do you have a easy going adult thats needs care and could share
lam a concern mother about my disable young adult with Down syndrome,she is 28 yrs old and I Just sleep t night for thinking about what will happen to my Daughter are were will she go. the prices i have check out are outrages.if you can help me on some other info about disable young supervision/ support
…I’m a retired RN 68 years old taking care of 2 adult sons who were diagnosed in there 20 s with CHS a rare neuro muscular disease one is in a wheelchair one uses a walker, they both have mental decline also. One is total care.My husband recently had a heart attack and open heart surgery.We are struggling to care for these boys and worry every day what will we do when we can’t care for them. They are pleasant and love social interaction.We want them to be together in a good care facility.
2 adult kids with Spina Bifida wheel chairs, my daughter married a man with Spina Bifida, Both his parents have passed. I have been their care provider for 21 years as a Cdac . His health got worse , and he got weak, he is living in a Nursing Home, its been horrible during covid, he faced most of it alone. He is 50 and my daughter 43 .Still lives in their apartment that is not wheel chair accessible , we made minor adaptions -- She needs help so I am still her Cdac worker, but I'm aging out 68 years old. I WAS HOPING TO FIND A PLACE THEY CAN BE TOGETHER , HIM GETTING NURSING CARE AND HER ASSISTIVE LIVING???? IM AT A LOSS OF WHAT TO DO.
My live-in handicapped daughter is 51 years old. I cannot find any resources to help her in the even of my death (I am 78 years old). I am so consumed with worry about what will happen to her when I am gone, which could be any time. I have tried to talk to her about what she will do without me handling everything and her response has always been "I think about it every day". That comment alone has given me nightmares, literally. What can an elderly parent do who has minimal income & health issues of my own? My daughter has only had employment once in her life. It was due to another parent who tried to help. She only lasted one week on the job due to the fact that she could not retain instructions. She could not write a check until I gave her an example to use for future use. She cannot drive a car due to the fact that she has failed the test for a learners permit twice. I have hoped & tried to teach her how to maintain her home which has fallen on deaf ears. I haven't pushed very hard but have thrown subtle hints, but her bathroom is filthy and her bedroom is a mess. I worry every day about what will become of her when I die...I even have recurring nightmares. I'm surprised I have lived to be this age. Her older sister is in an assisted living residence due to the fact that she has Type 1 diabetes, has brain damage and cannot take care of herself. I do not know why my children were born this way although I have run the gamut of psychiatrists, psychologists, m.d.'s, nutritionists, etc. and never given any true results as to their conditions and how I can handle these issues or what will become of them. I am beside myself with grief as I know that if I die before something is arranged for her, only terrible things could happen to my remaining daughter. I have loved and cared for them all of their lives. I had such hope that they would at least learn to care for their home, cook and take on some responsibilities but my hopes are all gone now. I recently (3 months ago) tried talking to my live-in daughter only to end up in an ugly argument (she fights back). She thinks she will be alright. She has now spent 3 months in her room & rarely leaves even to go outside for fresh air. I have tried to explain my concerns & told her I care for her very much. I've never felt so much love for 2 people in my life and they turn their backs on me if I dare bring up this situation. I don't want her living in a "group home" as my area only has homes in bad areas. I need help - sooner the better.
I live in Cali my disabled son has Medical cal and SSi disability . He is in a wheelchair with a neuro muscular disease. How do I find a group home. I’m 68