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 (16)
Love
I am nearly defeated by years of fighting the system, from making sure my boys was safe in the care of the School District to not knowing why both my boys come home with unexplained bruises. I have reached out for help from State officials to Local News Stations to Harrisburg to Oprah and no one cared to get involved. I'm aging now and still have a hard road to travel and what I notice is that the government doesn't want people to know what's really going on to low income families with special needs kids. They flood the media with the negative side of poverty and welfare and sweep lifestyles like mines under the rug. I never abused or used the system, I was the lone parent popping up to the schools, requesting better treatment and education, every year asking for a IEP meeting to find the right schools but after consecutive years of "meetings " I noticed a pattern, School starts in September I request for an IEP, it's always scheduled in late January. I'm trying to get a transfer to private school and they trying to con me by saying "Well, it's only 5 more months of school and it's hard to find a placement this late in the school year, so let's pick this back up next school year..." When my youngest received a new diagnosis by a renown Dr. I just knew things would change because he was Autistic now, but no.. he never received Autistic support. I am so hurt so tired and left with the feeling of failure in the worst way, I couldn't save them from abuse, I couldn't afford an attorney to get them justice, they was in the care of the school and I couldn't proved who what or where. I have to travel around the city to keep proving their disability as if its going to mysteriously disappear. But I was given them for a reason... My autistic son and I went on a trip out of town with my mother's church and by the time we got there it was obvious that the church members was all that "saved" as I vented to my mother away from the group three members walked up, and out of nowhere I said "My child is Proof that God is alive, because all praises goes up Thanking Him that their child, grandchild is well, thanking Him that they don't have it hard like me". Well on our way back home my son was content and I bet Everybody went home and got on their knees to ask for forgiveness.
Posted: October 18, 2014 at 3:24 AM
Bob
I'm glad I found this site. It's very interesting hearing about others who are going through a lot of the same things that I deal with. I'm just trying to plan ahead for my boys future when school is done. He is a sweet soon to be 13 year old who needs constant attention. I worry about him 24/7.
Posted: October 15, 2014 at 6:51 PM
debbie
Care.com is good but ranges from 15 to 25 dollars an hour.
Posted: October 14, 2014 at 8:05 PM
Babs
I have an adult daughter, age 37, who has learning disabilities and schizophrenic tendencies controlled by medication. She has always had a part time job and lived at home, but she has not taken her meds consistently and as a result, is very moody and close to losing her job. I am 60 years old and retired and the only reprieve I get is when she's at work. I just can't have her live here 24/7 if she loses her job. She lies around, makes messes, watches television, and eats non stop when she's home. She has no idea what changes would happen if she had no income and no health insurance and no job. I want her in an independent living situation but don't know where to turn. My nerves are a wreck... Just venting now.
Posted: July 31, 2014 at 6:19 PM
Lori
Well, I wish I could solve everyones problems, but you see, I am a fully functioning 41 year old female with epilepsy, depression and PTSD. I also live in a group home with 11 other people-their mental abilities range from about age 8 to age 40 and everywhere in between. We have people here that deliberately urinate all over the toilet and expect others to clean it up, we have people that ask 'hi, how are you?' about 30 times a day, we have people that have no idea how to clean up after themselves, so the people who are more fully functioning get to do it, I know what I'm saying does not sound like much, but imagine, if you will, putting up with it 16-18 hours a day, 7 days a week. I have days here that I am surprised that I'm not in jail, and I'm not a violent person. I am glad I found you all, thank you for letting me vent.
Posted: July 24, 2014 at 2:03 PM
Joan B.
I have a developmentally disabled daughter 53 yrs. old, but her mental age is that of a 8 or 10 yr. old. She lives with me in a condo. I am 78 yrs. old and have mobility issues because of severe arthritis. She is in a day program for about 4 for 5 hrs a day to which I take her and pick her up. She has behavior issues as well....mostly attention getting bad behavior. I am desperately in need of someone who can come in and stay with her for a day or an overnight or two. If I want to go somewhere, I have to take her or I cannot go. I have 3 other daughters who all have their own families and their own lives and jobs and I don't get much help at all from them. Very disheartening for me. I am very lonely and at my wits end. I live in the San Gabriel Valley about 18 mi. east of Los Angeles. The respite agencies I have inquired about all are very expensive. Any suggestions????
Posted: July 24, 2014 at 1:09 AM
Milly
I also have a son who is downs syndrome but is at the level of a 3 year old in speech and a 6 year old with understanding. I stay home with him while his Dad is at work. It is very hard for those that have special needs adults. "Friends" try to understand but really do not want to do anything with him. Finding a sitter is very hard so we can do adult things with our friends. His younger sister sits with him once in awhile but she resents it. I have recently moved to another state and are having a very difficult time finding an adult day care for him. I had one in the other state that was great. He is bored and wants to go to stores all the time since he has nothing else to do. I hope I can find a place for him soon.
Posted: May 23, 2014 at 4:38 PM
gabriela rodriguez
I HAVE A special needs son and I m suffering a lot thinking what's gonna happen with him if I passed away. That's my concern.I love him a lot he is my baby. And I don't want that he suffer. Please need help to find a good special needs housing in los angeles ca or Pasadena, Arcadia ca.
Posted: January 30, 2014 at 12:03 AM
becky
I have a 20 year old daughter who is very high functioning. My problem is she has started dating. He is physically abusive to her and is at this point in jail. She is in charge of her own finances. He has been unemployed the year that she has been seeing him. He has just lived off of her. I listen daily to how much she loves him even though he has put her in the hospital before. I am at a loss since she is over 18. I have no clue what to do. I just become more depressed every day.
Posted: September 15, 2013 at 12:00 PM
Mary
I have a 26yr old daughter who is basically non verbal. After many yrs of taking antidepressants & antipsychotic meds. (None of them seemed to help) we may have found out the true cause of her tantrums & difficult behaviors. On April 12th she started a new med. on the 16th she fell down a flight of 18 concrete steps, head first, on her back & then had a seizure. I believe the seizure was a side effect of the new med. At the hospital the drs did a CT scan & found the injury from the fall was a single fractured rib, however they also told me she had an intestinal malrotation. Apparently she would have been born with the rotation & it would cause every symptom we complained to her drs about for yrs! She had surgery to correct it last week but so far mentally she seems so much worse. I don't know what to do..
Posted: June 20, 2013 at 12:17 AM
Lehigh Valley, PA Kathy
I have a 23 year old daughter with autism. Shortly after her 16th birthday my husband died- very suddenly. Prior to his death my daughter was not eligible for SSDI because he made too much money. After his death my daughter received SSI Survivors Benefits. Now she makes too much money to qualify for any programs. I would love to send her to a day program but can not afford $2000.00 a month (more than her survivor's benefits). I was recently contacted regarding a waiver for her. Since she has been denied 4 times based on "income" I contacted her caseworker who informed me yes- she would be denied. I was contacted again and informed the waiver was not based on income but on need and she would most probably qualify since she does not talk, read, write and needs me to do everything for her. She was evaluated on Tuesday and I was told she most definitely qualified. Wednesday morning I received a call saying she did not qualify because her income was too high. I told her caseworker that if something was not done SOON I would be having a nervous breakdown! I love my daughter but we both need a break. She needs to socialize and so do I. Since I am also her legal guardian I have all expenses at my fingertips and can prove her income is far less than her expense each month. This Wednesday we will be proving this. If all goes well she will be receiving the waiver funds around July 1. I will never give up and neither should you! Our children deserve to live their lives to the fullest and to be happy. If one group says no ask another, and another, and another. Eventually someone will say yes.
Posted: June 03, 2013 at 11:37 AM
Photo of Linda P.
Linda P.
Where do you each live, I live in West Lawn,Pa. not sure if were are all in the same area?
Brandy, do you have a supports caseworker ?
My son is 32 total care & severe profound M.R.
He does have a "Waver Grant" that pays for services such as Dayprogram & help in our home.
I would be intestested in hearing more from each of you if you'd like to also
Thank you
Linda
Posted: April 11, 2013 at 12:20 AM
brandy
hey my name is brandy my brother is autism and adhd he also bio pole he is 24 years old my mother pass away in 2008 since then he has been live with our father my dad is sick now and they are both living with me i do not know what to do i have 3 little boys and he can not take it he say he want to hurt them and he can be very hard to deal with at time there is nothing for him to do where i live i have not found in program or nothing yet someone please help me i just do not know what to do my kids can even be by him because he may hurt them dose any one know what i sould do i love my brother he going thoung a lot right now and i just want to help him but my kids come first
Posted: March 29, 2013 at 2:40 PM
Patty
Patty
I am a mother of two wonderful young men. My older son is 28 yrs. old. He has special needs and lives at home. Although he
is physically higher functioning (has epilepsy, mild CP) his developmental delay is significant and isolates us both tremendously.
My heart breaks for him every day to see him so lonely -- for his peers. That seems to be the hardest part. He does not fit in anywhere. He has neurological impairment, but no label such as Autism or Down Syndrome etc.

Even at a young age, about 4-5yrs, my son has been painfully aware of his learning disability. Partly due to speech impairment which often brought on cruel taunts by children who did not understand. He would come to me in tears saying "they all make fun of me, I wish I don't have learning disability". It took a lot for me to not cry too and to give that pep talk we now know would been one of thousands. Did any of us know back then that it actually gets harder for these precious souls? So unfair...
Posted: December 02, 2012 at 9:44 AM
elizabeth
hello patricia i`m reading what you have written and i understand totally what you`re going through. i too have a child who i choose to say is special needs. she`s 22 but functioning mentally of a 7 year old. i try to give her the fullest life that i can but i myself feel so isolated and filled with anxiety. i`m so afraid to put her in a day program because of so many mean people. i moved from one state to another and here i have little to no support so it`s lonely for me, with my husband being in the middle east. i would love to bounce ideas and opinions off of eachother sometimes. i do hope that you start to feel less lonely really soon. you and your son will be in my prayers:)
Posted: June 06, 2012 at 6:41 PM
patricia donohue
i have a 32 year son, who is retarded. he is a home with three other gentlemen. my problem is i need support from other parents that are dealing with the pain and hurt of having a adult child with special needs. the loniless some times become unbearable. thanku, patricia.
Posted: April 02, 2012 at 10:29 AM
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