Special Needs Care for Adult Children: Care Options

Finding the right type of caregiver for your adult child

Just as parents of children with special needs rely on caregivers and support systems when their children are young, they may also need to rely on caregivers to help meet the needs of their adult children. In fact, caring for adult children with special needs can become more difficult as they grow larger and heavier, and more complicated as they reach adolescence.

Various options exist depending on the child's level of need and the family situation. Some adults with special needs may be able to live independently, others may require increased support.

Care Options Available

  • Family members. Many adult children live at home with family members as their primary care providers. According to one web source, 76% of individuals with developmental disabilities live at home. In a quarter of these situations, the average age of the adult child was 38; caregivers were age 60 or older.
  • Home health aides or personal care attendants. Depending on the child's level of need, these providers come into the home to help family members in a variety of ways. In addition to providing respite to family members and being a companion to the adult child, home aides assist with duties requiring more physical strength or perform specific assignments such as bathing and dressing.
  • Community-based homes and supported living arrangements. Adults living in group homes enjoy some independence, but receive support as necessary depending on their needs. Caregivers living or working at these homes provide a range of services, from supervision to help with medication to advice on getting to work and dressing appropriately.
  • Independent living arrangements. Depending on their situation, some adults may be able to live independently with some form of additional support. For example, they may need someone to help them for a few hours a day with activities of daily living, transportation, meals, etc.
  • Day programs. Once they are no longer attending school, adults can benefit from day programs appropriate for their level of ability. Providing structure to the day through a variety of educational services, these programs help adults work on life skills while offering social opportunities.
  • Long-term care facilities. Some adult children with special needs require extensive support around the clock.  In cases such as this, parents may feel their child's needs are best served in a long-term, live-in, care facility.
  • Assistive technology. There's a wealth of assistive technology, from software to sports gear, which may help your adult child be more independent. Your child's physician can help steer you in the right direction. 

Needs Change Over Time

One of the main challenges parents of adult children with special needs face is that of their own age and health. It's not uncommon for parents to care for their adult children well into their 70's, even into their 80's. The caregiving picture may change dramatically with a parent's illness. 

As parents age, they may be the ones in need of senior care, while their adult child with special needs continues to require the support of caregivers.  Planning ahead and evaluating caregiving options prior to a crisis can alleviate some of the stress that is inevitable when the balance of care shifts within a family.

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

Next: Cost of Care »
Comments (51)
Amy
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
Posted: August 05, 2016 at 2:52 PM
Cindywhyaskwhy
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!
Posted: July 02, 2016 at 9:06 AM
Debbie
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.
Posted: July 01, 2016 at 1:39 AM
Whyaskwhy
Hello I seems to notic America has a high demand for places for our special needs children My Husband and I take care of his brother he's 23 years of age pretty much after school ended for him we tryed everything we knew to but him in a day program you know for a outlet there is nothing here no help no nothing eighter he's to smart for one program or to slow for the other it's like the world don't know these kid are here or they need help they caregivers parents and other who is taking care of special need kids really need help outlets a plan case something should happen to the caregivers what happen to the kids....It's ruff out here..
Posted: June 27, 2016 at 10:54 PM
Suemarie
Betty V. My heart goes out to you, and to you too Cynthia....so hard I know. I don't have any answers. I've checked the Autism.org site, but I have yet to find any long term, hands on help there. I have a 40 years old son with mild autism, anxiety disorder, adhd, ocd, paranoid personality disorder and social anxiety. He is living for the first time in his own apartment, but he needs lots of help. He seems to be getting worse all the time and I'm very concerned about who will help care for him when I'm gone. I feel at this point I won't be able to find anyone reliable. He does have a sister, but they've never gotten along. I do have a special needs trust set up for him when I die, but just having someone pay his bills and dole out money when he needs it doesn't address the whole problem. He needs someone who cares about it. Maybe thats just the mom in me. Good luck to everyone out there. If anyone finds any useful information please post it. Take care......
Posted: June 15, 2016 at 3:47 PM
Betty V
My daughter is 38 years old. I am 67. She lived in supported living since she was 22 years old and it worked out fine until she got sick. The staff in supported living had no idea what to do with her and she got worse. They allowed her to go through withdrawals off her medication. She stopped eating and was extremely combative. Police were called. She was hospitalized but doctors had no idea what to do with her and being on Medicaid, well no one wants a special needs adult. After three months of what I called abuse by supported living staff and provider of said home, I was lucky enough to have a cousin who was Director of Nursing at a local nursing home. I paid a huge amount of money to admit her into their care. Medicaid paid nothing. She got better and the threat of losing her Medicaid all together made me move her into my home. She got better but the trauma she went through left her fearful, needy, and over the top anxiious where she refused to get into a car, shower, eat, and even wear her glasses. I had to do all the work to find her medical help. No one will take care of a special needs adult and my daughter was not allowed to go back to her apartment because the supported living director stated they were not trained to help her. I found an apartment that she could afford on Medicaid, but I will have to pay everything but the rent. I also found wonderful in home care that is willing to come in daily to assist with meals, showers, and companionship. No, it isn't perfect. She has lost her roommates and is still extremely afraid of her staff but for now it's the best I can do. I will not live forever and I have to make arrangements for her since there is no one else who will help her when I'm gone. The state of Indiana has nothing for special needs adults as they age. We as parents and guardians have to create trusts (The Arc of Indiana) for went we die the money may be able to support our children in good nursing homes if needed. If I had money I would build and open a special needs adult nursing home/assisted living community. If only....
Posted: June 13, 2016 at 9:05 PM
Cynthia
My daughter is 9 years old. She has Autism and global developmental delay. She is becoming more verbal but she has a lot of sensory integration issues. Loud sounds, bright lights and fast moving objects or people scare her. She does a lot of Self injury behavior, ie: biting her forearms, banging her body against hard objects and sometimes head banging. She can also be aggressive if she gets angry and she has punched, hit and kicked my husband and I and her babysitters. She is going to a school for Special needs children here in CT and they are much more equipped to handle her behavior than the Public school was (she was in a public school special Ed. Room from kindergarten through second grade. My husband has a psychiatric illness and is disabled. He also has a very bad back injury. I am a full time librarian. I am the only one working in my family and I do a lot of the caregiving for my daughter. My husband was doing better and he has been able to care for our daughter, but I can see that it is getting harder and harder for him to do basic things. He is not able to follow through with any kind of intervention program for my daughter, and for any intervention program to work there has to be A LOT of consistency. I fought hard to get services from my State Department of Developmental Services, but my daughter is not eligible for Medicaid because I supposedly make too much money. My daughter is now on a "frozen" waiting list for in-home behavioral supports, but our Governor just gutted our DDS programs, and many DDS employees are getting laid off, so it is unlikely that my daughter will ever receive the services she desperately needs. Her psychiatrist also believes that there is a possibility that she has a psychotic disorder alongside the Autism and global delays. There is indication of this because she will sometimes interact with internal stimuli when there is nothing there. My husband and I are struggling to manage her aggression and self injury behavior. I have physical problems myself from being overweight. We do get some respite from a woman who lives up the road from us. She is a daycare provider and she has a lot of experience caring for special needs children, especially those with Autism. My greatest fear is that my daughter's self injury and aggressive behavior will become too much for us to continue to care for her, but because there is no help to be found, I don't know what is going to happen to her, and I am terrified that once my husband and I are gone, that she will be left homeless. She does not have any siblings, I do, but my siblings children are far away and only two of them would be trustworthy enough for me to give over her care to them in the future. My husband has 1 brother who is mentally challenged with Autism. His brother is 48 years old and not well and his mother is 76 years old and still trying to care for my husband's brother. She has not made any definite plans for my husband's brother's care after she passes on. There is no way that my husband and I can take his brother because we can barely mange my daughter as it is. What is most frustrating for me at the moment is the fact that I desperately want to work towards my daughter becoming more independent (right now she is still learning to wipe her butt, she wets her bed every night and she can't bathe herself), but I don't think my husband is capable of following through with any behavioral intervention program and I am working full time and I work one to two evenings per week, I have almost no control over whether or not any intervention we try will work because I can't control whether or not my husband or our babysitter for that matter will be consistent with the intervention. It is very hard to talk to my husband about these issues, he immediately gets defensive and makes everything about him and his needs, not about my daughter's needs. I feel like giving up a lot. I am exhausted all the time, I work in a toxic work environment, where morale is terrible, and I go from one stressor to the other. I feel like I have no life! I love my daughter more than anyone on this earth, but I am concerned about my and my husband's ability to continue caring for her as she gets older without any in-home help from a behaviorist, speech pathologist and occupational therapist. We as a family need these supports. My insurance through my employer doesn't cover them because the Town I work for is self insured, and as I said, my daughter is not eligible for Medicaid insurance because I make too much money. This is a terrible shame because the State of CT has a program called Value Options in-home Behavioral Supports, but only State residents that qualify for Medicaid can access this program! What a lovely country we live in where those that are vulnerable, who can't speak up for themselves, are swept aside and left to die in poverty! Ghandi once said, "A country's greatness is measured by how it treats its weakest members." Where this is concerned the United States gets an F!!!!!!
Posted: June 07, 2016 at 9:54 PM
Pang Vang
My brother is 38 and he is going through the same thing that BeanPie mentioned. I'm also looking for answers as to how do i go about helping my mom and brother find the right long term facility for him?
Posted: June 05, 2016 at 7:27 PM
Jessie Harrison
When you have lived in your home as long as my grandma has, there's a reason why she won't leave. However, she needs to get help! I like that assisted living brings the care to them. I do have one question, though, do the caregivers stay in the home? Because I notice that you say that the care given can change overtime.
Posted: May 30, 2016 at 10:31 AM
BeanPie
Hello Everyone. Its good to see other handle their experiences with their special needs love one, and help others. This has been a long journey for my mom, siblings, and other family members. My brother is 34 years old with special needs. My mom is getting older and having a very hard time keeping up with him. She raised him from infancy and still has him, she never wanted him to leave her hip. However, the older he gets, the harder he seems to be obedient to instructions. He becomes defiant when he feels someone is trying to tell him anything he doesnt want to hear. It can be very trying and stressful often times, but we love him and wants what will be better for him. My mom finally have come to the decision to put him in a nice long term care facility that can continue to help him grow, learn and be more positive. Please help if any of you have advice or information. It would be greatly appreciated. Anything helps!

~Bean S.
Posted: October 15, 2015 at 6:16 PM
mother
Hello. My adult son is 23 and is disabled. He lives with his father who was legally removed as guardian 18 months ago due to many reasons including financial exploitation and undue psychological influence. The judge ordered a temporary third party guardian because of the bad relationship between myself and his father, so I am not the guardian either. My son continues to reside with his father in spite of the orders and the guardian refuses to remove my son "against his will". As with most people on the autism spectrum, change this big is very hard on him and he refuses to cooperate especially since his father controls his every action and reaction. The guardian believes his not removing my son via law enforcement constitutes "first do no harm" ethics. I know my ex will never support my son in the court ordered move and he has filed appeals all the way to the supreme court without success. Are there any scholarly articles I can show the court supporting protective placement when warranted having ultimately a positive outcome?
Posted: August 28, 2015 at 6:16 PM
donna
I am 69 my developmentally delayed/high functioning daughter lives a residentual group home with 6 other ladies 40 plus years old. There is a long story here of course, but I am in contact with my daughter every day and she spends one or two weekends a month with me. My problem is "when I'm gone who will be her advocate... watch over what is going on in her life and the care that she is given." Group homes are less than satisfactory especially if no one is watching. What can be done? I'm not talking about finances but someone to be close to her???? Caregivers are underpaid and group homes are now cutting back on healthy food and unless someone is there to communicate needs..... nothing will happen. Anyone have a clue.. it is heart breaking to think of someone you love being left with no one... Thanks
Posted: August 17, 2015 at 6:08 PM
karen g
I too have a MR son he's 32 and yes it is hard trying to find a day program for him while I work. Something that I found out is that you can call 211 and explain to them what you are looking for they gave me a list of programs in my area that I could check out also try the Department of Social Services in your area they can help also. Believe me I understand what each and everyone of you is going through I am going through it as well. Will keep praying for all of us that one day we can find a place that's a perfect fit for our child as well as for us. NC
Posted: August 06, 2015 at 12:41 PM
Sheena
Hello all. I never thought I would do this because I don't reach out much to anyone. Most people don't understand our situations especially if you're tough. They don't know what to do when you finally break down and ask for help. I don't have any family support my son is 17 with CP epilepsy and some autism. He's nonverbal he walks runs loves to play love music enjoys people has a drooling issue that hasn't been controlled by medication. He was taken one medication that made him very sick. So he drools. It's uncomfortable for people most on accepting other stare. He mostly has night seizures they've been well controlled lately every now and then will get a stray seizure. I'm pretty sure everybody goes through something of the sort with epilepsy or even random cry the night or them just being scared. Which makes it even harder to send him somewhere you know they probably could benefit because you're scared. There's no one that we can't really talk to about this and they were and they really actually genuinely understand that it's difficult and you need them to be cared for. I have been thinking about it very much this year due to the fact he's very active and can be defiant and somewhat sneaky when he wants something that I told him no about. It becomes an issue when you can't hear them doing something that's very dangerous like turning on the stove the microwave, the coffee pot, plugging in things. Yeah everything is unplugged at night not to take it off the stove but there's always something that he gets into and makes a huge mess every day is unexplainable be smart. But it's becoming very hard even take them out grocery shopping to the movie to the park to the gas station I need a sitter for this or it doesn't get done. He has two younger siblings 15& 13 The really good kids and they help out a lot with him but as in previous messages you don't want to leave that burden on them to care for him only because they've done in their whole lives to along with me and you know the difficulties behind it. I've cried before I wrote mine during this writing and I'll probably cry myself to sleep but I love him so I have to do was best for him. I tried explaining to a couple of family members that I was thinking of placing him in full-time care they make me feel so low almost like I was abandoning him. There's no one else to talk to besides you go through it as well. Thanks for listening and thanks for sharing.
Posted: August 01, 2015 at 10:57 PM
Dar from Indiana
Hi, this is my first time here....How sad that we as parents/care givers are so isolated. I have a 26 y.o. son with Autism, Fragile-X syndrome. How much we all have in common! My one piece of advice for those with children still in school: Get an Advocate to go with you to IEP's. They know the laws and what is possible and what should be done. Teachers/administrators/therapists respect Advocates more because they do know the laws. Also, if something is agreed on at an IEP, ask: Who will be responsible for implementing it, when can I expect the services to begin, and how will I be notified of progress and how often can I expect a communication. Make sure someone is taking notes including you. If you have dates and notes, you are taken more seriously. Remember, an IEP is a Federal document - legal.

We are considering bringing our son home as he has lived in a center, a group home and waiver home and none are set up for him to be successful. Even the day programs lack staff with appropriate training. I have seen instances in Michigan where parents are buying homes and joining other families. I would like to look into this.

Does anyone else find it ....frustrating that the requirement for a worker with our special needs children/adults is a high school degree.? As a TA in the schools, I was required to have an Assoc. degree, 60 college credits or take a state exam. Why do our children deserve less?

Blessing to us all.
Posted: July 24, 2015 at 10:03 PM
Renko
How do you get a 27 year old mentally disabled young man who has a good job but has been told verbally and in writing that he needs to clean himself and be more hygienic or he will lose his job. Do you have any suggestions?
Posted: July 22, 2015 at 9:18 AM
jessica pena
I know it's politically incorrect to say this but I'm tired of caring for my autistic son, who I think has Fragile X. We can't go on a vacation because he's four years old, still wear diapers, has very specific food preferences, and is prone to terrible meltdowns. He also doesn't talk yet, but is starting to. However, he tends to regress so I'm not jumping for joy yet about on improvement. He has been to Regional and is a special ed class in an excellent school system. His teachers are afraid of his temper tantrums, so I hope they don't kick him out. Our local private school for autistic children costs $34,000 per year.
I feel trapped and emotionally drained. The thought of spending the rest of my life taking care of my son is depressing. I grew up in a large family and had to protect my siblings from my abusive mother. Now I have to spend the rest of my life taking care of my son.
Anyway, thank you for listening.
Posted: July 15, 2015 at 10:39 PM
Mrs. Thomas
I have a 20 year old daughter who has emotional and mental health issues. She has been acting out since the age of 9 and I have been through the ringer because of her. I am married and we have 4 other children as well all of us have been going through this so long and just can't do this anymore. I have done all I can from talking to having my husband chase her down when she ups and leaves I also have had her in many residential placements but that was before she turned 18. I need to find a place for her where she can be supervised because she is not mature enough or aware to be on her own this is why I continue to just deal with it but I have had it. She receives SSI and it can go with her wherever she goes to I need some advice on places she can go at her age please anyone help!!!
Posted: June 28, 2015 at 10:50 AM
BJAI
This comment is for LULU who has the 33 yr old daughter who is at a 3 year old level. You are stating no one will take adults in with her issue because has no way to verbally connect with others. It is only a suggestion but perhaps the Lord wants to use your family to start that place. I am sure thee are alot of people who need this help as well and with unemployment such that it is you most likely will not have any issues in hiring. With telling your story there may be someone with a whole lot of money that would aid this endeavor especially if someone close to them had a similar cause. I hope your daughter is happy where ever she is living. I pray it all works out for you all, Bjai.
Posted: June 23, 2015 at 11:38 AM
Jeannie
I have a 23 yr. old son with cp & cognitive disability. He is wheelchair dependent so 24/7 care is needed. My husband & I take care of him at home.
We are in our late 50's with some health issues. It gets harder & harder to care for him. We don't know what we are going to do. He goes to the ARC day program. We live in MA. Our 4 other children have their own lives although one daughter helps out when she can. As you all know quality one on one care is so very expensive.
My husband & I thought if we could be creative and find a few other parents with similar needs as ours that we could by a home and the funding would come from ss & other government helps like section 8. Then we could hire who we want and be involved with the people that would care for them. It is much more affordable when you have a few people working together.
Well that's my thoughts for the day.
Take care everyone.
Jeannie
Posted: June 11, 2015 at 7:19 PM
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