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Just curious what plans people have made for their adult special needs children (or will make as the child moves into adulthood).
My step son has Downs syndrome. He lives with his elderly grandmother, she has raised him since he was a baby. He holds a job but will never be able to live on his own.
His grandmother insists that he will stay with her until she dies. At that point she wants him to move in with his father (my husband).
Since children typically out live their parents what becomes of a special needs child when their parents die? Have you made plans for this?
Just curious what plans people have made for their adult special needs children (or will make as the child moves into adulthood).
My step son has Downs syndrome. He lives with his elderly grandmother, she has raised him since he was a baby. He holds a job but will never be able to live on his own.
His grandmother insists that he will stay with her until she dies. At that point she wants him to move in with his father (my husband).
Since children typically out live their parents what becomes of a special needs child when their parents die? Have you made plans for this?
I think it's really important that you are thinking about this and would honestly consult an attorney who can help you start to think about 1) financial ways that you can all support him after you are gone, 2) make arrangements for his living, etc. This is something that you should all discuss as a family and then make sure to nail down legally.
We have talked to a lawyer about setting up a trust but I don't know where to find info about living arrangements. Everything I come up with on the web is more geared for mental illness, homeless, emergency centers, etc.
I believe the grandmother knows more but will not discuss it as she has her own view of what will happen when she is gone. I am a planner so I think we should research all options and have a longer term plan. My husband is the first man in his family to live beyond his 50s. It just seems practical to me to have a plan. Even if he lives another 30 years his son will probably live longer since he is in excellent physical health.
When ever my husband tries to discuss these issues with his mother she shuts him down. She is a good woman in many ways but if she feels that you are crossing her in anyway she will turn very ugly.
My oldest son is 21 and has ADHD and Asperger's Syndrome. He lives in an apt. and right across from his is a young man with Down's Syndrome that lives on his own as well. I know there are many levels of Down Syndrome pertaining to functioning level. This young man holds a job at a fast food restaurant not too far from where he lives. He gets a free bus pass and takes the bus back and forth. His family visits and checks on him as well as having someone that comes in on a regular basis and help him with life skills etc. None of this costs him as he is on SSI and gets Medicaid. If your step-son can hold a job I am wondering if he could indeed live on his own with some preparation.
I also had a great great aunt that had Down Syndrome. Her mother cared for her until the day she died, which was in her 80's. By the the daughter was in her 60's and knew no other life than with her mom. She ended up being put into an institution because most of the relative had died or lived too far away or were not prepared to care for her. How sad to have a girl her age go from being at home with her mom to being institutionalized. I would hate to see anything like that happen to your step-son. Now is the time to begin preparing and possibly even getting him into an apartment or a group home now before he loses his grandma. That way he is in a permanent living situation and can still have his grandma visit or visit her while she is alive, and not have the trauma of having her pass and at the same time have to move and live elsewhere.
Brokencrayola
Can you tell me if the place your son lives is a complex for people with special needs? It seems like a great situation. I think my step son could probably live alone with some over sight. The biggest concern would be his gullibility, he would be an easy mark on his own.
I am sorry about your aunt. This is what I fear will happen to my step son some day. His grandmother views talk in this line as the "wicked" step mother and my husband as selling out his son when what we are really concerned about is that the scenario you mentioned doesn't happen to him someday.
What state do you live in? My 22 yr old daughter is in the autism spectrum/asperger's syn, very adhd, IQ 50, front lobe damage at birth-high impulsivity & bad judgement & no short term memory. We're researching moving from IL because there are no services and they wait until parents die until a person is put into a group home. I'd really like to hear your comments. Thanks,
Greenerpastures
What state do you live in? My 22 yr old daughter is in the autism spectrum/asperger's syn, very adhd, IQ 50, front lobe damage at birth-high impulsivity & bad judgement & no short term memory. We're researching moving from IL because there are no services and they wait until parents die until a person is put into a group home. I'd really like to hear your comments. Thanks,
Greenerpastures
This pretty much describes Ohio too. You really need to visit areas to determine about group home arrangements, this is too variable to find out over the internet or from printed promotional information.
Just curious what plans people have made for their adult special needs children (or will make as the child moves into adulthood).
My step son has Downs syndrome. He lives with his elderly grandmother, she has raised him since he was a baby. He holds a job but will never be able to live on his own.
His grandmother insists that he will stay with her until she dies. At that point she wants him to move in with his father (my husband).
Since children typically out live their parents what becomes of a special needs child when their parents die? Have you made plans for this?
We are keeping our Downs Syndrome inflicted daughter until we are no longer capable. At that point we will shift her to a group home, and still participate to the extent possible.
If you have other kids, perhaps they will be willing to assist later in life too.
Check with your state's Department of Health and Human Services, they should have an agency dedicated just for this kind of purpose. Either through and adult services bureau or developmental disabilities services office, something like that. There are ways to get assistance through them for these purposes. Also, agencies like Easter Seals might be able to assist. Good luck.
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