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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:

95 Responses to "Who Will Care For My Special Needs Adult Child?"
    • Maria Gandara | September 1, 2022 at 2:00 pm

      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

    • lorraine drake | July 4, 2022 at 1:09 am

      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

    • Carolyn Watson | June 22, 2022 at 8:51 am

      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

    • Sandy | June 16, 2022 at 12:59 pm

      …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.

    • Alona L Pickett | May 25, 2022 at 6:45 pm

      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.

    • Judy Malone | May 12, 2022 at 4:47 pm

      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.

      • Sandy | June 16, 2022 at 1:09 pm

        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

    • James shaffer | March 22, 2022 at 3:45 am

      I have a 46 year old brother that lives with my father my brother mentally handicapped he has mentally of a 8 year old well my father’s health failing and I work all the time I just can’t take of him when father passes what I am going to do I am so lost any suggestions

    • Naiomi zupko | March 13, 2022 at 2:26 pm

      My daughter is 19 and is MID. I learned over the years that when my child is mad, she didn’t understand something and is afraid to let you know that fact. So she lashes out and feels less than she should. I also learned to help break it down so she can understand it. I’m at a point that i don’t know what to do now because she’s 19 and she has gotten to the point that we are now entering the teenager rebellion stages and it’s not a cakewalk by any means. She doesn’t understand why she can’t be like her sister and brother and drive or get her own house. My heart is breaking and sometimes i just need someone to hear me and understand my frustration.

    • Liz | March 9, 2022 at 8:28 am

      My brother, whom is 39, had COVID last year. He was home and he had a massive hemorrhagic stroke due to COVID raising his blood pressure. He was in a coma for 10 days, now has a plate in his head and is paralyzed on his entire left side. He has a condition where his right brain does not recognize his left side. It is like it never existed. He has a fiance whim is sticking in there but I don’t know if that will last. He needs 24 hour care. I worry that if she leaves, my parents are gone, what will happen to him. Will the government help, due to him needed help to wipe himself and he can’t use 3 of his body parts. I just think about it all the time. I love him so much but I cannot take care of him, due to my own disability. I love him so much. He was my best friend; however, we had a slight falling out the year before his stroke. My husband refuses to let him stay with us. A very long story….let’s just say, my brother lived with us for years before his stroke and never helped with bills, etc. He was kinda a jersey but the stroke made him nice. I know it sounds crazy, but it destroyed the mean part of his brain.

    • Teresa Franklin | February 27, 2022 at 10:31 am

      Hello, My Son he is 18 will be 19 in April. He has, Autism/ ADHD/ Gene mutation/ Mood disorder/ bipolar/ others unspecified. I had to fight the School system. I had to refuse to pick my Son up to get the help that he needs. This past Thursday court hearing. He will be placed in Adult assisted living within the next 3 weeks. The whole situation was not right. our systems is so backwards. I had to be the criminal so I could get my child the help that he needed. I even lost 6 weeks of pay as well. In the End I would do the same to make sure that my Son gets the proper care he needs. There needs to be more awareness on Mental health. More advocating to help our kids to be successful. We need more support for our kids, less criticism, from people that dont understand or have walked a mile in our shoes.

      • Slowe | April 21, 2022 at 3:17 pm

        Wow that sounds similar to my situation…I’d love to message you to hear more of your story. I always feel so alone- no one understands what we are going through…

    • Samantha | February 12, 2022 at 11:16 am

      My sister is 19 years old and autistic. She cannot drive, she most likely will never get a job that requires skill. She can’t tell time or money, all of the schools she’s been in including the INTERNATIONAL SCHOOL FOR AUTISM have done nothing for her. They let them draw and just hang out. She goes to therapy because with autism comes a lot of mental health issues, depression, anxiety. I am 28 I have a 5 year old and live with my boyfriend. I lived with my sisters and mom until a year ago because my little sisters behaviour and teenage outbursts started effecting my daughter. We have no idea what to do with her, at home she doesn’t want to do anything, she won’t help around the house she just sits all day watching tv no matter how hard you try to motivate her or invite her to do things she genuinely enjoys doing nothing. My mom won’t live forever, my old sister and I wonder where we will put her when the time comes because neither of us will be able to just live with her forever. We live in Florida.

    • elissa | February 2, 2022 at 4:37 pm

      My brother is 25 years old with multiple diagnosis (intellectual disability, ASD, OCD, & ADHD), and currently lives at home with me (22) and my mom (44). As he gets older it is becoming more and more difficult to keep staff that come in home, and even more difficult to find day programs for him to go to. We found one group home that was a good fit for my brother, but he did not behaviorally meet the required staff to resident ratio. The group home needed him at 1:4, but right now he barely is 1:2. My mom and I have not been able to get behavioral modification services to work on his independence, as he is bigger and the less desirable case choice when compared to a 6 year old. My mom and I are barely able to work because his companion care staff keeps quitting to work with younger people who require less attention. My brother is not aggressive or combative, he just wants to have mental stimulation. Most of these caretakers just let him sit on the couch and stare at wall, not even caring to turn on the TV. My brother is nonverbal, but it doesn’t mean he doesn’t like being spoken to. My mom and I are stuck right now, and it feels really hopeless.

      • Keith Gibeling | February 16, 2022 at 5:33 pm

        My little girl is 10, and sounds a lot like your brother, only she can be aggressive. She’s already a handful when she has a tantrum. I wish I had the magic words to make you feel better. I’m searching for solutions myself. It’s a very hard row to hoe. Just know you’re not alone. Try to connect with others through your local Autism Society. Take care of yourself and don’t expect perfection. I wish you all the best!

    • Jennifer | January 27, 2022 at 6:29 am

      My brother is 43 and has cerebral palsy. My mom was his caregiver and she just passed away a few days ago. My dad is disabled as well and is going to need care also. I am unable to care for them full time I work have children. I would like to find a home for him and my dad could maybe be together and have the 24 hr care they need. We live in Alabama and some resources may be limited.

    • shannon crystallesar | January 22, 2022 at 4:34 am

      iam looking for a pet friendly place i got edward symornd so i can have some dogs and cats in my place poodle

    • Michelle | December 14, 2021 at 8:24 pm

      I read your story and I’m in the same situation I’m finding out that it’s difficult to find a group home for My son who is intellectually and physically disabled he will always need somebody in so I’m looking for a residential care facility because I can’t find a group home just curious where did you find yours if you don’t mind me asking I can feel what you’re saying and I understand it’s not a good feeling

    • Lois DeLong | December 13, 2021 at 9:53 pm

      My daughter Karen has mental issues. Her younger brother told her to do dishes then started a fight with her. I don’t want & she don’t wanna move into another group home after her last experience.

    • Angela Knox | November 30, 2021 at 3:12 pm

      I am the parent to a 27 year old cognitive delayed son, and you are correct there is no where for them to go after they age out of the school system. My son had been on the waiting list for over 10 years to get into a program where he would have some type of life. Then covid happen and we moved six months ago to another state, I am looking for programs in Dallas to get him back on the waiting list or directly into a program.

    • BamBam | November 27, 2021 at 1:26 am

      I pay all my boyfriends bills

    • BamBam | November 27, 2021 at 1:17 am

      My man Has special needs

    • Claire Masters | November 1, 2021 at 5:53 am

      It’s great to know that there are a lot of service options now for people with disabilities as they could go into special care communities or opt for nursing care. I feel relieved that my newborn would still be comfortable somehow when she grows older knowing that these services are available for us. I hope I could find passionate and understanding assistance when we really need it.

    • Yolanda | October 28, 2021 at 7:01 pm

      I raised my daughter from the day after she was born. She is my cousin but she calls me mom. She been diagnosed with cerebral palsy and mental health disorders. She’s been in my life for over 20 years. However, I had to put her in a group home recently and I thought that was the hardest decision I had to make. I tried to get her help but none of the doctors nor mental health professionals understand nor has helped us in this situation. I’m writing this today because the behavior has gotten so bad that even though she is in the group home I tried to still be there for her. But today I had to takea step back altogether and I let the group know. So today has been really hard for me. My friends all have healthy born children and really don’t understand. They say things like you did the best you can however that don’t help me feel any better. I’m leaving this comment because right now I feel all alone as if know one understands. This article is always been my greatest fear and even though right now she’s in a group home what happens if that don’t work out. Is there help out there where we can be back together

      • Liz Cue | November 1, 2021 at 9:53 pm

        Hi Yolanda, oh love I am with you. My brother has cerebral palsy as well. He is 42 years old, my parents are 72 and 78 and we recently had to put my brother in a nursing home this week. And it has been hell. He was is a HCS house but they couldn’t care for him like he needs. Now we are dealing with a nursing home that won’t put him in his wheelchair because they would have to strap him in with his belt and that is considered a restraint. It feels like there is no help for people like my brother and your daughter when they get older. Unless you pay private and that would be almost $36,000 a year…. who has that ? It is crazy, and heart breaking. I am praying and praying that there is something else out there for people like our love ones. I hope and pray the group home is good for your daughter, there are good ones out there. My brother loved the one he was at when they could take care of him. You both will be added to my prayer list.

      • Michelle | December 14, 2021 at 8:21 pm

        Hi I read your story and it’s interesting because I’m kind of in the same situation. However it’s my son I also have a special needs daughter but at this point she doesn’t have the issues that my son does. Can I ask what state you’re in and how did you find a group home I am currently looking for a group home because I have no success of finding anyone who would consider taking him in. His father passed away a couple years ago and it’s become more difficult but I really can’t understand where you’re coming from because you worry about what’s going to happen when you want the best for them I’d like to find out more about what you did you were on a wait list for 10 years? I guess maybe I’m not understanding but that’s really sad and then I hear it’s even harder these days to place a child in a group home or an adult child in a group home they’ll always be our children thank you for sharing I hope to hear back from you

      • Michelle | December 14, 2021 at 8:29 pm

        Hi Yolanda my prayers and thoughts are with you because I understand where you’re at because I’m at that now even though my son is still here waiting for a group home placement San Diego regional center doesn’t have one the doctors understand but people say oh it’ll get better I have a special needs daughter to but she’s not having the behavior issues. It is very hard and sad when you’re alone and you feel alone. I understand after losing my husband I didn’t feel so alone before my husband got sick but I hope that in time things will work out for you and I hope the same for me I just need some guidance on where are you found A group home I hope that you like the group home? I worry too if he goes to a group home but if it doesn’t work out but there’s nothing we can do that’s what I’ve been told we just have to leave it in everybody’s hands it’s easier said than done

    • Jennifer Dee | October 2, 2021 at 11:31 am

      Hi, I have a severely disabled, 24 year old adult child named Joseph whose disability is autism and mental retardation, and( overly medicated note). I think he mostly requires two to take care of him. He lives in a group home, employees keep quitting,( especially during this epidemic of Covid 19). Now the Work Unlimited group home organization just gave his parents 30 days for Joseph to leave the group home. Where does adult child go if they can’t handle a group home?

      • Michelle | December 14, 2021 at 8:32 pm

        I’m glad I came across this I was good to read your story yes I have a son who has intellectual and mental retardation and mental disabilities and where do they go if it doesn’t work out my son has regional center and they are having no luck finding a group home I’m looking for a private one I’m having no luck with that it’s hard and sad when it comes down to that thank you for sharing my prayers are with you

    • Vera Lafortezza | October 1, 2021 at 3:38 pm

      Disabled son 57 needs medical care and physical. He can’t leave room. this has been seven years . Who is out there?????

    • Denise Selters | August 27, 2021 at 11:58 am

      I love my son unconditionally! A vehicle hit him when walking down a frontage road.. He was on a coma for weeks. Now he is 42 still living with my husband and myself. He has short term memory loss. He blames me for things that go wrong.. And has destroyed our property. We kicked him out oof our hes on the streets but always comes back here.Not sure what to do how to help him. Ive done everything i know how to help him. Is there anyone or anybody that can help we are in Fresno. This is killing me from the inside out any help would gratefull thank you

    • Richard L Buse | July 4, 2021 at 10:07 pm

      I am 71 and have a 39 year old son who has Schizophrenia and OCD. He has lived with me since he was 8 years old, and was diagnosed as a Sophomore in High School. I have no life whatsoever other than dealing with him. It is like being on call 24 hours a day 365 days a year. I had a heart attack 14 months ago and recovery was very hard while dealing with all of this at the same time. I have to get him into a group home or something or I won’t last very long like this. He is way too much for someone in their prime to deal with let alone me at 71. His case manager was supposed to be looking in to getting him into a group home, but then she suddenly quit her job and just walked off, and has not been replaced.
      I am losing my mind doing this. He thinks God is talking to him all the time and this is truly terrible. My whole family is stressed out completely8 from this.

      • Emma Deadner | January 13, 2022 at 12:45 am

        Its really hard,when u begin to get older, and trying to deal with a 33 y/o son with schizophrenia, bipolar, drug abuse,and PTSD. He denies everything, and gets aggressive and violents at times when he has withdrawals from drugs. We live in Texarkana, Texas,and there is no resources for him. I know that my husband and I will have to seek help from somewhere, we cant get any rest, because he is in and out the door all the time.

    • Phyllis Calway | June 28, 2021 at 8:58 pm

      I know someone who is in need of help finding a group home for her son. He as down syndrome,does not talk , sometimes he will do sign language,but for most part he doesn’t. He doesn’t feed himself,is not toilet trained. He wears adult pullups. He hits himself so bad that he causes himself a hematoma. No one that he has seen does not know what causes this . At times he will tear up or destroy things around him & thinks it’s funny. The tv he has broken at least 2 times until it was hung on the wall. Is there a group home for him & if so point me in the direction that can help Thank You. phyllis calway

      • Michelle | December 14, 2021 at 8:34 pm

        Thanks for sharing I have a son who does similar things but his behaviors have gotten better but they still can’t find a group home I’m guessing he’s Original center client. My son needs help with everything cerebral palsy intellectual disability toilet training and never will be toilet trained he has pull-ups adult pull ups it said I will let you know if I find one please let me know if you find one

    • Lois Lindsey | June 28, 2021 at 9:48 am

      My Daughter is thirty five years old don’t want to leave her home alone while I work any suggestions

    • Kalyssa Hanks | June 3, 2021 at 6:45 am

      I need a caregiver for myself and I want to be in assisted living

    • Olivia Paschal | April 30, 2021 at 9:38 pm

      Hi I have a special needs brother who is eleven. Ever since quarantine he’s gotten more anxious and his stems have gotten worse. He’s nonverbal and he can’t walk or feed himself. He can’t stop biting on his fingers he has bitten them until they bled out, and he can’t stop yelling like it’s non stop. He seems like he’s suffering and I fear that he might hurt people in the future because he has bitten and injured past nurses. I am his only sister and sibling and I’m afraid for his future. I don’t have much knowledge about this but all I know is the that I still want to see him and I hope he doesn’t have to be restrained in the future.

      • Bill Bailey | May 3, 2021 at 1:36 pm

        Hi Olivia- What an AWESOME sister your brother has in you! 11 is a tough age especially considering boys are beginning to enter the changes of puberty is the not too distant future for him. Each situation is different, but I can tell you that getting the med scripts tuned-in were a big help! Our son has Autism, ADHD, and DMDD. So, this complexity we found very hard for providers where we live to see him just typical couple month appointments for 20 minutes. “How’s he doing,…” type questions. Then they send him home with a new psycho-pharm med to try, or adjust here, adjust there. “Give us an update on how those changes work at home.” Yeah- well those heavy-hitter psych-meds are powerful. So, here we are at home, not sure what to expect- trying to deal with behaviors of aggression, prop. destruction, bolting, screaming, etc…and wondering what are the triggers. We found that he received the best meds tailored to his needs when he was inpatient at a treatment program. This way his team of providers can observe him 24/7, gather needed data, and most importantly he is in a safe environment with a staff that is trained to work with the behaviors. They can take the time to do a medicine trial and get the meds matched. We couldn’t do that at home with two younger children, and both my wife and I working. At the treatment program my son went to- they stripped all the meds the Autism Center where we lived prescribed him over the years, and built a whole new schedule. They matched him much better. He still had issues to work on, but we could tell he was doing better. Great programs such as Kennedy Krieger in Baltimore, MD, and Bradley CADD in Providence, RI were really good for my son. HOWEvER, no matter what they accomplish in those great programs, if your brother returns home with no supports or services available to maintain his stability- then regression can take place. That’s what happened to our son in Upstate NY. OPWDD and the local agencies did not have the in-home and community-based services, or residential group home opportunity available for him. Both my wife and I have been very active in contacting the state agency for disabilities OPWDD, contacting agencies, and state legislators. It was a dead-end. In our case, my son has been through three intensive inpatient treatment programs, each lasting months, only to return to Rochester with no supports and services. Three regressions between- three programs needed due to the increase in unsafe behaviors to himself and others. I would certainly look to get the meds piece straightened out first. At the same time, try your best to connect with support groups, your state disabilities office, and Care Coordination for your brother to secure (lock-in) supports for your brother. I see everyone praise Upstate NY, but we’ve really struggled over the years here. I think some it depends on how severe the behaviors present, or how much support the individual needs. I can say confidently that I believe those with milder behavioral supports needed- probably can get the service providers in-home. But- unfortunately, if the behaviors require a high level of support, those fall off, and do not get the services or residential opportunities. Its backwards, but part of this issue is the lack of direct support workers who can work with those with a high level of needs. It depends on your brother’s level of needs. We live in Upstate NY, so perhaps if you live closer to a Metro-area, you might have an easier time locating services and supports. I can feel what you might be enduring and the love you have for your brother! I am finally contacting attorneys to join class-action lawsuits against the state office of disabilities for neglecting the shortages and not funding the supports and services needs for NY disabled citizens. The funding was there, they made a path to pave the way with budgetary changes, but the state still has yet to address the needs. This has been going on for years, prior to Covid. I certainly hope the state in which you reside has a good system of delivery for the supports and services your brother requires for his life. Perhaps, start researching other places to see how they manage their system for the disabled? And as hard as it is to do- you need to take of yourself Olivia. See if you can locate a respite provider who can give your family some time to be “off” for a little while- so you can recoup. This is a marathon in a way, so pace yourself as best you can- even in little things. Enjoy the positive things that your brother does. Perhaps its drawing, building, or some small thing that you both can interact happily. My son loves PBS Curious George. We have that as part of our daily routine for him. He’s calm when that’s on. Things you may not realize when you are caught up in the swirl of the hurricane. Let me know if these idea can help your brother.

      • Bill Bailey | May 3, 2021 at 1:58 pm

        Hi again Olivia, Does your brother have any type of sensory input he likes? Such as being wrapped in a big blanket like a burrito? Does he like swinging? Or, does he like a trampoline? A weighted vest or blanket? Sometimes- these activities have calmed my son. He needs them for a few minutes and then he seems to be better regulated. For the weighted items, you need to check with an Occupational Therapist. They are good with figuring out what sensory inputs your brother may benefit from. Also, I believe they can get a weighted vest or blanket, as there is a ratio for bodyweight : blanketweight. Sometimes- a child’s GI tract may not be working optimally, and he may not be able to tell you. A good contact is Dr. Tim Buie at Boston Children’s Hospital for that. I’d also see if you can contact a good Speech-Language Therapist, or ABA therapist to work with your brother’s methods of communication. Not being able to communicate effectively sure can increase anxiety and frustration. The meds, if not matched correctly can cause problems. Check those treatment centers I mentioned. They develop behavior plans as well tailored for your brother while he’s there as an inpatient. Call their intake specialists to get advice. Also- he likely senses surrounding frustration and anxiety you may be feeling- which is normal. Not sure what your particulars are- I hope you are able to reach out and get the help for your brother he needs.

      • Nick | May 5, 2021 at 8:26 am

        Hi Olivia, I know a little, due to having a severely autistic son. Sounds like your brother has sensory impairment. See: . The key thing is to understand his sensory issues and to find ways that he doesn’t get overloaded. That would hopefully lessen his anxieties, the problem behaviour, and the chance of him needing restraint. Also see Ido himself has severe non-verbal autism. He has a book called Ido in Autismland. Its great to hear from the perspective of someone like that who lives that every day. Maybe some things Ido has to say could help your brother. The very best wishes and hopes for your whole family’s future, it’s tough I know but we’re not alone, Nick

      • Michelle | December 14, 2021 at 8:37 pm

        It is not easy when I hear what you’re saying I’m going through that with my son right now and he has a sibling sister who doesn’t understand my son hurts himself I sometimes hurt other things and people he will always need to be taken care of I’m just hoping something will come along

      • shannon crystallesar | January 22, 2022 at 4:42 am

        read torn apart book from james patteson book at you librabry near you

    • Bill | April 23, 2021 at 11:38 pm

      I’m in awe as I read these stories. So many families in need of assistance in caring for their disabled loved ones. Sparked by the national sweep to close all institutions (abuse and neglect) of course the right thing to do. However, the notion that all disabled can be served in their homes or with community services is short-sighted. It might sound heartfelt- but the “one size fits all” model by Fed’s and state agencies is a disservice to those families entrusted in their care. Some families can not provide the structure needed for success in their homes. Appropriate community services May nit be available for those within more challenging behaviors. The states agencies don’t see this. Sometimes the best approach is a good residential group home. They have the highly structured enviro and skilled staff to provide what the person needs fir success. Many well-intentioned and living parents can mot duplicate this in their home. Meanwhile Fed and states continue to cut funding to group homes. Why? Waiting lists through the roof. Definitely a need here. Let the person gain the skills they need as an adult, with families working with the staff. Let the family stabilize at home for other siblings emotional well being and allow parents to work again and restore their health. Cutting off the group home option for disabled kids is wrong! Perhaps we collectively need to rally together and flood our legislators with non stop calls and letters demanding they hear us! That’s the ones who get the attention! Like those above has mentioned- it’s not just children with disabilities who need group homes, but homeless children, and other bad situations who demand this level of structured care. Again, why are the Feds and states eliminating those homes which provide a genuine good service?

      • Keith Gibeling | February 16, 2022 at 5:45 pm

        Bill, I believe you are correct—We must make our voices heard. The need is growing, and it’s a problem many (MANY!) families can’t handle without substantial assistance. I don’t know where the money is going to come from. Maybe a multi-billionaire will read these posts and decide to help? lol

    • Nolan Beran | April 16, 2021 at 12:29 am

      Very good blog,thank you very much for your time in writing the posts.

    • Catherine | December 6, 2020 at 4:00 pm

      I google, research, attend advocacy programs in search of guidance or books offering successful answers to these same type questions the parents on here seek. I have 3 disabled adult kids I’m trying to assist with setting up their futures. It is obvious by the many stories though that answers are difficult or unavailable.

    • Angel Torres | November 13, 2020 at 4:36 pm

      On average, mothers are left with the responsibilities of care for the entire life span up until death or disability.
      I am dealing with a woman, that is 74, she is and has been so proactive with her disabled son. She is in fear because his health is not going well and if anything happens, she will be in deep depression, as well as lost. Without IHHS and at 74 she has been the care providers her whole life, the father doesn’t help or pay support. She shared with me that she called the father to express her feelings and fears. His comment was, “so you have been caring for our son just for the money?” And this happens all over California, the father and men get careers and leave there responsibilities behind. It’s sad for the woman, mother’s and for the children that don’t get the father figure.
      Something should be done politically to help make Fathers more responsible.

      • Cindy Easton | January 24, 2022 at 4:20 pm

        I also live in California. My daughter’s dad moved into his own condo about 10 year’s ago. Our older, 26 year old daughter, developed bipolar depression around age 20. Since she was over 18, of course, we had no say in her mental health care and could not help her. She has a few community college credits and has worked on an off at a couple of minimum wage paying jobs. She was living with her father until he kicked her out because his GF moved in with him. She moved in with me, but I cannot tolerate the stress. Her younger sister is developmentally delayed and I have spent 20 years advocating for her. Luckily, she is conserved, so I can help her with her health and mental health care and other things. There older sister is very disruptive to our household and has no concern for the need of her younger sister for quiet and routines. The older sister has never been very clean or tidy or courteous, but she is far worse now. She has a job out of state. Every time she comes, we have to take her room apart and clean out 6 inches of papers, trash, food wrappings, etc. from under the bed and inside the closet. She came back in November then left after 2 weeks. I did not bother to clean out her room because she said she was coming back in a few weeks to go through her stuff and clean it out. She came in around the New Year. She said she was here to “help me.” I gave her a list – clean out the refrigerator in the garage where she had left an awful mess and clean out her room and give me items for donation. She said she cleaned the refrigerator, but she did not. She was here for 2 weeks, using any space she wanted at any time of the day, making noise, leaving messes to be cleaned up. Things like garage keys went missing, yet she had no idea of “where they were” and had not “seen them.” The day after she left we opened her bedroom door and we were aghast at the trash, food wrappers, clothing under the best, cardboard boxes, old shipping envelopes etc. all over the room. It took us 2 hours just tp rake out stuff from under the bed to take out to the trash. I have done 7 loads of her laundry so I can go through them and take some for donation. We still have to clean the rest of her room and repair things that she broke. I found the garage door key in her underwear drawer and a router extender that had disappeared plugged in under her bed. She effectively cut off her younger sister being able to access the internet for several weeks by unplugging the extender. I have to tell her that she cannot come back. I am worried about her, but I have to take care of myself and her younger sister. Their dad lives about 2 miles away. The only time he visits the younger daughter is maybe 3-4 Saturday mornings a month he takes her to breakfast or lunch for two or 3 hours, then drops her off at home. Otherwise he does not spend time teaching her things or helping her read or learn to grocery shop, or anything practical. I also work full time and pay for someone to work with her in the afternoons after school. If I am really lucky, her dad pays for half her caregiver and he pays the mortgage. But he doesn’t do any of the advocating. He always has “somewhere” he has to be – playing golf, watching yet another “Big Game,” hanging out in a karaoke bar, or playing in a “garage band,” This is a 60 year old man with a decent job making decent money and THOSE are the things that are more important to him than spending time with his special needs daughter or trying to help her older sister get proper mental health care. He does the “fun things” with them, but never the hard things. He might take younger daughter to the dentist, but will never ask for time off short notice if she is sick or has a last minute doctor appointment. I always have had to leave my work to take care of these things. In addition, he does not maintain the property we own. We have a house that he rents out. He refuses to sell it but, because he did not take care of some necessary issues about 20 years ago, or ever, it now has about $100,000 worth of termite and dry rot damage due to a leaking basement. He doesn’t come to do anything to the house we live in at all. It costs me between $150 and $600 a monthly to take care of the outside of the house, make sure there is a fire break, chop down weeds and combustibles. He seems to have no concern about things that are flammable or hazardous. It is very draining on me to try to do everything. I never get a break or get to do things that I like to do. I figured out that, on a weekly basis, I spend 100 hours with my daughter, and he spends maybe 4 hours. He thinks all he has to do is write a check and he is absolved of responsibility. My daughter qualifies for respite care, but the companies who provide care, have not had anyone available for us in about 2 years. Of course, camps, etc were closed due to the pandemic, which made things even worse. I was not able to even go visit my brother out of state for a few days, because of fear of getting infected and passing it to my daughter. When I retire in a little over a year, I am going to start looking for a different home with les maintenance. This will help me out, but it won’t solve the problem of where she will live when I am 70 or over. Her dad has not got a clue. Her older sister says she will take care of her, but she can’t even take care of herself. I am exhausted. The Regional Center can’t help me. I don’t know if any type of attorney can help me. Her dad hasn’t helped me make any plans for her for where she will live in 6 or 7 years. She won’t be able to live independently. She can be left alone for a couple hours at a time, maybe a couple times a day. but definitely not 18-24 hours daily. IF ANYONE has any suggestions I would like to hear them. I am hoping to find an attorney to write some sort of agreement on selling property when I find another place to live, paying for that property and how any other proceeds would be invested for our daughters’ future. I have other issues pressing on me as well. I really want to just drive away.

    • 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?

    • 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.

    • 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.

      • Michelle | December 14, 2021 at 8:41 pm

        I hi Grace nice to meet you my husband and I are older also and I have an autistic daughter and developmental delays I just pray and hope that someone will be there to take care of her and help her currently I’m having to try to find a Groupon for my son I adopt with my children they were younger you know we always think we can do everything but as we get older yes what’s going to happen they have another sister who has no interest just like you and not taking care of them or helping them sometimes it’s probably for the best just pray that somebody will be there yeah when Covid hit my daughter was in a program also but they stayed open It’s in Oceanside California I’m not sure where you’re located Hopefully you set up a trust that’s what I did my husband passed away two years ago so now it’s just me thank you for sharing

    • 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.

    • 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 ❤.

    • 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.

    • 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.

      • Emma Deadner | January 13, 2022 at 1:00 am

        I pray that you will find help for your son, my husband and I have been dealing with a son for about 20 years now, with hardly any help, nobody wants to deal with mental issues. My son is 33 years old with schizoprenia, bipolar, ptsd, anxiety, and he has a history of drug abuse. They can be very dangerous when getting upset about something. He threatens to kill us also, keep praying for help, Im trusting that God will help us all.

    • 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 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.

    • 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.

      • Nick | May 5, 2021 at 8:39 am

        HI I dunno if answering a year later can help, but will try. Seems to me the responsibility of financially supporting your son is everyone’s. In many (most?) countries , this is recognised by a welfare system that will pay something to support a severely disabled person, which comes from the taxes of all the rest of us fortunate enough not to have these disabilities. I know the USA has problems in this area, but maybe you’re entitled to something? Clearly putting the poor man on the street is out of the question. If you get desperate, and he has no income, how about talking to homeless charities? When I volunteered giving out hot food to homeless people, in fact, quite a few weren’t homeless, maybe they had a place to live but suffered depression, various mental illness, so had no money or ability to cook. Another place you might look is churches. If you can find a church where people believe God loves everyone equally and its our duty to help everyone with whatever need they have, you might get some help. (not every church is like that though… 😉 )

    • 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

    • 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?

    • 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.

    • 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.

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

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

    • 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.

    • 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

    • 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.

      • Lisa | May 5, 2021 at 10:49 am

        Are you disabled? I ask because if you are, you would know that a majority of disabled persons, especially autistic persons, DO NOT prefer person first language. I encourage you to follow disabled activists and listen to the voices of actually autistic individuals.

    • 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.

    • 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

    • 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!

      • Jennifer Wellington | February 19, 2021 at 4:08 pm

        Hello. My name is Jennifer, mom of Katie, 34 years old, living at home, severely disabled…in the same situation as everyone else.
        Were you able to start your home?

    • 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.

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

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

    • 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

      • Olivia | April 30, 2021 at 9:47 pm

        Hello I hope you’re family is doing well. Do you have any suggestions for my younger brother? He’s eleven and he’s in the exact situation especially during quarantine since he’s got more anxious. I worry about him and I’m sorry for bothering you. I am only fourteen but I care deeply for my brother.

    • 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!

    • 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 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.

    • 5 | May 28, 2019 at 9:32 am


    • 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.

    • 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!

    • 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.

    • 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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