Where Will My Special Needs Adult Child Live

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

39 Responses to "Who Will Care For My Special Needs Adult Child?"
    • 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.

    • 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.

      • 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.

    • 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 | 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!

    • 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.

    • 5 | May 28, 2019 at 9:32 am

      1

    • 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 http://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.

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

        Thank you Kathy for this great information for our readers.

    • 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 31, 2019 at 12:31 pm

        Thank you for reading, Sara!

    • 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

    • 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.

    • 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.

    • 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!!!

    • 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/

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

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

    • Siaunie | November 20, 2019 at 8:58 pm

      I am a nurse and I work with developmental disabled patients. I have a clients and his dad asked the same question,”where will my son go when I’m no longer able to take care of him”. I told him he had me.

      Long story short he now has offered to help me start a personal care home for the developmental and mentally disabled. It’s such a great opportunity because I want to change healthcare . I’m so excited to finally Implement all my ideas.

      I definitely pray that everyone gets the care and help that they need.You are truly a blessing to selflessly care for someone in need . I’d love to hear any suggestions You guys have.

      • Extra Mile Staff | November 21, 2019 at 1:41 pm

        What a heartwarming story! Thank you for sharing with us Siaunie. Best of luck to you!

    • Evelyn | December 3, 2019 at 7:14 pm

      I have my disable son that needs help all his ADLs . First concern his PCP is not really checking his medical condition . All he said if sick bring to emergency. No follow up. I’m looking for PCP here in Lancaster CA that has concerns on disable adult

    • Francine Hamilton | December 22, 2019 at 8:55 pm

      We have a learning disabled daughter who is 33 yrs old. She has always lived with us except when she was away at a college for LD students for 2 yrs. She has an hourly job, owns a car and drives, but is completely deficient in understanding money, value, consequences, etc. We are very concerned for her future. She doesn’t have a full time job, though we have lived in PA for 10 yrs her case workers (always changing) sit her in front of a computer for hours to look for and apply for jobs. There is no training. There is nothing for her to better herself. She is a housekeeper and she likes the work because it is routine and she is comfortable with routines. She is isolated from people her own age. She has no friends, no social life, nothing. She sits in her room with our dog and watches movies and listens to music when she is not working. I work full time, my husband (her father) is disabled and is home. I am frustrated with the services here in PA. I thought she could be trained for a job that would secure her future but I am told they don’t do that here. Every time I call or try to contact someone they route me to someone else, and I rarely have spoken to the same person twice. We are at our wits end.

    • Crystal Bose | January 9, 2020 at 2:46 am

      I enjoyed reading this and it included some great information. One thing that I would like to share is my passion for person first language. It is important that people are not identified based on their disability. It was stated “autistic children” and instead it should be worded as children with autism.

    • Fanny Marsh | January 20, 2020 at 10:44 pm

      Not sure what to say on these issues, problem is school and society tend to reward bad actors therefore disabled kids get the boot. Good actors get nothing. Many no lo ger want to face the issues just push the problems away. A facility needs to be built to help disabled birth to death. No more mixing and pushing special needs under the rug

    • susan | January 27, 2020 at 5:36 pm

      My daughter is 29 and i have many of the same concerns and issues as all of you.
      She is now living in a group home a mile from my house and she calls her room her apartment.
      I started looking 4 years ago, just because i was afraid it would be hard to find a place where I could let her move and still feel like a good mom. I love my daughter to infinity, however she was battling with me over any change in routine or unexpected change in our day, even simple requests, like take your shower…. Im happy to say that she likes her apartment and we go out on dates now and enjoy spending fun time together! Im the good cop finally, her best friend, im not the bad cop so much any more…always on her case trying to make her do what needs to be done.

    • Julia Ayers | February 9, 2020 at 10:51 pm

      I have cerebral palsy and my friend has autism. Can we live here?

    • Robert Pahls | February 10, 2020 at 3:09 pm

      My wife and I adopted a boy getting ready to age out of the system from China back in 2016. He will be turning 18 here this year and is connected with our local county board of developmental disabilities. He has a few minor medical issues, which will limit what kind of work he can do (needs to have continuous access to a restroom–though even this is fairly well managed). The main ‘challenges’ he has are that he received very little education while in China, has a lot of emotional trauma from China (and has been diagnosed with Reactive Attachment Disorder and Conduct Disorder). He is also deaf, and while this may be viewed as less of a disability (or not a disability at all) by some; this, combined with the lack of education in China, has created a significant language deprivation for him and he has multiple cognitive delays. Unlike most of the families I read posting here, our situation is a little different. Our adopted son has tried getting into our two daughters’ room at night to do inappropriate things to them, has done inappropriate things with their clothing, has physically harmed both of them, has threatened to put a plastic bag over our other son’s head at night, has exposed himself to our other son, and has indicated during counseling that he wants to hurt him mom (my wife), goes up to family photos pretending to shoot each of us. He’s done many of the same behaviors at school and occasionally has explosive violent outbursts, which has led to his being suspended multiple times and us having to pay for damages to school property. Yes all of this has been informed to our local board of DD, and Child Protective Services agencies, but very little has been done – he has what is called a waiver one through our board of DD, which basically pays for occasional respite (about 9 weekends/year). Our family is living in a nightmare and we are very isolated from family / friends / church. We do want our adopted son to be happy, have his needs met and live a productive and fulfilling life; but ultimately we need to keep the rest of the family safe and keep our marriage healthy as well. Our fear is that we will be ‘stuck’ with him. What can we do to get help when the local agencies that are supposed to help do not consider this to be severe enough to take further action? At this point we feel we need to start calling the police when incidents that compromise safety or destruction to property occur… but don’t know if that will potentially make it more difficult for him to ever get into these group homes/ICF’s, or a situation where he lives semi-independent ‘with supports’. We need him out/but safe as soon as possible. We are desperate and emotionally/physically exhausted with my wife showing signs of PTSD. We are a one-income family and cannot afford to spend $40k-$75k+ for him to live on his own, we need help.

    • Libby | April 16, 2020 at 8:28 pm

      I have a 25 year old daughter. She had two big life events that rocked her world. She started hanging out with the wrong group and quickly adapted to their behavior. It became so desperate to save her life that we had to admit her to a full time care behavioral hospital. I am looking for a Community that she can be independent BUT have support (groups, activities, therapy, life skill support). I love the idea of intergenerational living and tiny home communities. While she is still in the hospital, we are frantically looking for a better situation, the hospital is not working out so well.

    • April Collins | April 20, 2020 at 1:05 pm

      I have a son with a disability who just turned 19. Can he still get child support even if he went into a group home? Does anybody have any resources for what disabled young adults are entitled to?

    • no name | April 20, 2020 at 5:39 pm

      I am a mother of 4 girls 1 with special needs she is 56, doesn’t talk only a tiny bit theirs not much help here where we live I want her at one point to have her own place only with supervision she cant be by herself she don’t have any friends she is very lonely never had a man friend friend in general she needs friends at my age I cant take her to many places she needs to be involved with people, she doesn’t ,keep friends because they cant understand when she talk people can be so cruel i don’t trust every one with her she has more of a child’s mind,doesn’t hear very well I worry every day that i wont always be with what will happen to her,i think she needs to learn more girls come out to take care of her,they don’t care its all about money

    • Faith Conkle | April 26, 2020 at 11:55 am

      I have a son who is turning 19 in about 10 days. He is mentally disabled with a very long list of mental health diagnoses. He will be returning to high school in August. Am I still financially responsible for him since he has no income? This is just a question so I can fight a long battle with my own family. I say that I am still responsible since he is not able to take care of himself. They say put him on the street and let him fend for himself. I am not a cold hearted person. This is my son and I refuse to put him on the street with nothing. My son was diagnosed with Autism, PTSD, depression, conduct disorder, oppositional defiance disorder, add, adhd and bipolar. I am afraid that he will venture out in the world and get hurt. He is receiving no services at this time. He only gets phone support from DDD.

    • Rose | May 21, 2020 at 3:19 am

      I have a son who is 30 years old and lives with me. I am a single woman. My son has paranoid schizophrenia.. I have always worked at low income jobs. I have been very involved with SARDAA.org and NAMI and I know many parents.. even couples well off and highly educated, in same situation. The only difference is many of them have more children and their other children are willing to take over for mom and dad if something happens to the parents. I don’t have that luxury. My siblings are ignorant and have no desire to learn about schizophrenia or to be around someone with it. My parents are dead. It is very sad. I have spent thousands on lawyers who have, in the long run, not helped at all. Even the special needs trust I set up is basically a waste of time and money as I have no one to take over… I currently put down the state should take over upon my death. But I wonder, since a trust is private, unlike a will, what good does it do to even have it? I guess Ill have to try to get like a million dollar death insurance and have a lawyer take over and hope the lawyer is honest enough… but I don’t know how much a million dollar insurance would cost and if I could afford it. Otherwise I worry one day my son could become homeless. I encourage him to contact the behavioral health clinic upon my death and ask them for help to get him into an apartment if I can’t get the million dollar insurance.

    • Robin Bates | May 21, 2020 at 5:54 am

      We have a 23 year old son with multipul personality disorder .. he is constantly talking and arguing with himself .. he gets violent at times and we are in danger. He is always breaking and destroying all things..he is dilussional and he hallucinates. Can anyone help before he hurts someone. He is always threating to kill.

      • Extra Mile Staff | May 21, 2020 at 1:12 pm

        Hi Robin – We suggest reaching out to a health care professional for advice on this matter. Thank you.

    • David Collins | June 10, 2020 at 9:16 pm

      “By 2023, 500,000 million autistic kids will become adults.”

      That would be 500 billion people. What is the true figure? I’m researching for myself as I have a cousin who will be part of this figure and I want to better understand the figures in the US and the rest of the world.

    • Vicki A Chance | June 21, 2020 at 6:20 am

      I admire everyone sharing their story. My son is 36 w/2 inoperable brain tumors. It’s been a really long road as his health has declined over the year’s. He is now Bipolar/Schizophrenic which is just as scary to him as it is to us. His thoughts make him restless & we my ex & I try to find the balance w/his Drs about keeping him calm w/out overmedicating. It’s been tough but we still see him in his right mind often ❤.

    • Jennifer | June 21, 2020 at 1:37 pm

      I have been thinking about this a lot lately and makes me upset. I’m a single mom and 2 boys my youngest is 16 who had autism and significant delays. He can do a lot on his own but lacks common sense and Danger awareness and can not be left alone.
      His brother is 11 years older and I’m 30 years older than he is.
      It scares me that even as his brother gets older he will be left alone. He is still in school but once that ends who knows what will be available in services and even available for him as he ages also once I retire we will be moving.

    • Grace H | July 24, 2020 at 11:05 pm

      I have a 29 year old daughter who has Autism, developmental disabilities and seizures and she currently lives at home. She was going to a day program full time but due to Covid19, they closed the facility and she’s been home with me now for 4 months and we have no clue how long before they open again since the cases have increased so much. My husband and I are in our 60s and I’m very concerned about what will happen to her when we die. I have an older daughter but she has no interest in taking care of her sister. I am so confused about where to go from here. Any advice would be greatly appreciated.

    • RamonaF | August 19, 2020 at 1:04 am

      To Grace H

      I can deeply relate to your situation. I have a 25 year old severely autistic daughter who has developed severe violent meltdowns after she started getting wisdom tooth that were obstructed in her mouth. She has a lot of anxiety some times and now that they closed her school close to seven months ago she is struggling even more. She desperately needs that structure that she had gotten since she was about four years old. I am interested in making my house a group home and after setting it up move while my daughter stay in a structured environment but it will take me probably another two years. Some times her meltdowns are so severe that I fear I can’t protect her or my self. I am praying but if things don’t improve within a year I will sell the house and put her in a very structure level three group home.

    • Susan Lutz | August 23, 2020 at 3:21 am

      Okay so are there answers to all of these stories, I have a son with disabilities and have experienced many of the same and things where are the answers Please?

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