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I can’t stand the thought of putting him in a home. I feel guilty but I won’t be able to care for him myself. I’m 63 and he’s 60. How do I find a place for him when he only has a ssi income?
He probably qualifies for government assistance or government-funded resident care in a long term care facility. In my state, Florida, there are places that cater to people with developmental issues. Please check with your town/city, county/province, and federal resources.
This is a comment for OP and other posters whose parents have insisted on caring at home for adult children with problems, rather than send them to an institution when they reached adulthood. Where I am, the original institutions were on land of several acres – one had it’s own virtually private beach. They had a gym, a concert/dance hall, and other facilities. All good , and many parents were furious when they were closed down in favor of a community based approach. But it was a very ‘separate’ life. Not as separate as being kept in their parents’ houses, but still a world of its own.
The community facilities are usually semi-detached ‘double unit’ houses, with 6 bedrooms and space for the support workers. The residents have each other as ‘family’, and with staff support they take part in whatever community facilities are appropriate – including sheltered workshops which provide other ‘friends’ and a small income. Only people who need nursing care would go to a Nursing Home.
The people whose parents have insisted on keeping them at home have given these adults a very very restricted life - for decades in many cases. ‘Just give them a TV’ is too close to the truth in too many cases. Expecting other family members to follow the same line is unreasonable from all points of view. Sure, it’s a shock to leave the very little world they have been confined in, but no-one in the family should feel forced to continue with what their parents have done.
"I can’t stand the thought of putting him in a home" is NOT the only or even the right way to look at it. You don’t ‘inherit’ a sibling with disabilities!
That you for your post. It sounds like you live in a country that actually cares about its citizens. Sadly in the USA, there is very little done for developmentally disabled adults. But there is plenty of money to be found for weapons and for funding wars.
Douglasville, GA (where you live?) is 40-50 miles from Atlanta. First of all, be sure you state correctly what benefits your brother has: He should have already in place, Supplemental Social Security Disability income, plus the health benefits of both Medicare and Medicaid. Write down his Soc.Sec. number before you make any calls, and have in place "which benefits" he currently receives. Be prepared to be patient when you make phone calls to agencies, because sometimes it takes 'calling around a bit' in order to get the right agency. Senior Services of Douglas County are at 770-489-3100 from 8:30 - 2:30 pm, M-Fri. Please be direct and accurate: Our mother has died and my brother, age 60 years, has Mental Retardation and physical disabilities (explain those to them). You share, " I am seeking information on where he might reside, going forward." What group or facility residences for men with disabilities such as his, exist in Douglas County? There's also a Douglas County Community Service Board at 770-949-8082, but I don't know what kind of information they might have. I couldn't find a "Council on Aging" in Douglas County, but you as sister might be able to do so. Don't let "guilt" stop you from doing proper investigation and inquiry, beginning now. "Guilt" is for families who do not do due diligence through investigation of what will become of their mentally disabled children when parents and older relatives leave this earth. Get a ruled notebook, dear sister, and start taking notes of all the information you receive. Check out leads. Speak with other families who you know have an older disabled family member, and ask questions. You are being very responsible and caring, to take action right now to begin your investigations, and to come up with 'Options" for your dear brother. You will probably have to make "in person" visits to some potential residences. You can handle this, and you will be a very caring sister to find answers for later life for you brother.
If he's on SSI for his mental disability, he probably only has Medicaid. Very common for SSI/Medicaid for this disability and is usually the accepted payment for group homes or other facilities that handle this care. They will take all of the SSI except for a very small amt (it's either $30 or 60 in most states that he'll get to use for personal).
I have two cousins with mental disabilities. Both are in their 60s. One has intellectual deficit. Her cognition level is that of an 8-year-old. Mentally unstable and could go from calm to The Hulk in seconds. No cause ever determined. We'll call her Anna.
The other cousin was born with severe cerebral palsy. When he was born in 1961, it wasn't apparent anything was wrong until he didn't crawl or talk. Likely had birth trauma. We'll call him Mike.
So, Anna is an only child. Her father did the best he could, but her mother had mental illness and their family was just a dysfunctional mess. Neither made plans for her future. Mother died unexpectedly and then father was too old to do much besides get through the day. When he died, no one knew what to do. She'd scream and get violent over almost nothing, was very hard to manage, and needed close monitoring. Finally a social worker found a group home and she is required to be on psych medication while living there. It's been a win-win. She's calmer and doing fine. The home also has a supervisor there 24/7.
Mike was not expected to survive childhood. He got physically bigger and harder to take care of, and his father (and their two other children) said he needed a facility. His mother wouldn't hear of it, and later had two heart attacks from the physical and mental strain of caregiving. Father died and finally they had to place Mike. His mother got dementia and they were roommates in the facility. Both did well there. His mother died a few years ago now and he is still in the same facility. He's well taken care of and has the 24/7 help he needs.
Point being, you have options. Group home is probably best, but if that's not an option, a nursing home isn't a bad thing either. Just like any place, there's good ones and bad ones and you need to do your research. Please don't rule out a nursing home if it means he gets the care he needs.
Thank you for laying out in 'real life' terms the kind of family situations for which planning is needed. You emphasize "do your research" and that's what will make the difference for this caring Sister to NOT feel guilt. Group home or Nursing home are the two most likely options. Interestingly enough, I know of two other situations where a disabled son and his dementia mother were in the same facility. Worked fine for them, too.
My in laws assumed their daughter would live with her brother and me. Instead of asking if I would be willing to sacrifice the rest of my life for her daughter, she told me just give her a tv and she will be fine. That’s how I learned of MILs grand plan for my life. This is the same MIL who told me she would not babysit my daughter when I called to tell her I was pregnant.
In hindsight the expectations the family had for this woman’s future should have been discussed prior to our marriage. I was a stupid kid who just turned 22 and wasn’t thinking about the long term future. I thought my in laws would start thinking about placing her in a group home sometime soon. I take some responsibility for the situation, I should have really thought this through and I probably would have ended our engagement. She has a lot of issues and demands a lot of attention of her brother. An hour with her every now and then is enough. Having her around 24/7 would drive me nuts.
My refusal to take care of her has caused a huge rift in the family and I feel responsible for that.
You're not responsible for the rift. "Give her a TV and she'll be fine" is not a plan.
It was selfish and irresponsible for MIL to expect you or her son to care for her. It was her job to make sure sister would be okay, and she did nothing. There is no excuse for parents not making plans, and there's no excuse for a parent to just assume a sibling will take her in and do it all. And with you being female, guess who would be expected to take over bathing, changing clothes, and toileting?
As I mentioned in my own reply here, I have a cousin with severe cerebral palsy. He has two siblings. Their parents never expected or assumed their other kids would take him in and be 24/7 caregivers.
I would refuse too, and the rift is due to mother's lack of planning, not you. But I'm sure most family members think you should have taken it on with a smile!
Having facilities for the challenged is State based. Group homes have closed where I live, as they had over 10 yrs ago inbthe State my nephew had been living. If these "challanged" adults have no family, they are placed in Nursing homes with the elderly. I have a man I have known since he was a child in one now. He falls between the cracks. Can care for ADL wise but has no idea how to cook, do laundry, clean ect. He needs a group home where there is someone there 24/7 to oversee him. All we have is houses the County has bought up where homeless are placed. They each have their own room and share the common area. They have to be able to cook, clean and do their own laundry. They either hold down a job or have disability of somekind. They tried this for my friend and it did not work.
This is such a common problem that surely there must be a system for dealing with it. Perhaps your parents avoided getting involved in the system. Parents have always been worried about ‘what will happen to him/her when I die’.
Where I am in Oz, the old institutions for people with intellectual disabilities were closed down in the 1980s because of new ideas about ‘community support’. Small group homes were set up with funding but management associations to run them, and with various built-in supports (for example to use the bus system to get to a sheltered workshop). It wasn’t all smooth sailing – for example one committee I knew tried to stop residents going outside on their own in case of liability and insurance issues! I worked with lots of the associations as part of my management support work. Some parents insisted on keeping their adult children at home, often the same people who had refused using the institutions, but it’s not common and wasn’t encouraged. The life is too limited - smother love.
There may be nothing like this in the USA, but I would be very surprised because there are hundreds of families involved. My suggestion would be to find the association that is relevant to your brother’s ‘mental handicap’ – there is bound to be one, especially if it’s common like Downs Syndrome – and find out the options from them. They will have the knowledge and the expertise. This is not one to do on your own!
That's the 1980's for you. The third worst president in our history Ronald Reagan shut down most of the large, residential facilties for people with intellectual and psychiatric conditions in favor of the 'community support' option. It sounds good in theory, but in practice is a disaster.
Contact your local office on aging and they should be able to help you find a group home. Or get a social worker from an organization that serves elderly and or disabled people. They will help place him in a group home.
Mothers (fathers other family) of children with special needs have a tough role.
Many will help them become as independant as is possible, including assiting them to move out & into a group disability house.
But many won't. Prefer to protect or take on all the care themself. Some may see it as their responsibility for life. Without a future plan, these adults can be left stranded - as you know first hand.
I would look for a good social service, an experienced social worker who works with adult disability. Meet with all the key people, your sibling, your relative, you. Let everyone have their say. State want they want. Go from there.
Not every want or wish will be met. Compromise is often made.
It may take many weeks/months to find a new path, a new home.
It would be better to find the "right home" so that he is prepared to live on his own: it's just a huge issue (for family members) to "let go." If he is able to communicate, it might help to engage a psychiatrist who can walk him through the process and offer meds when appropriate. How about calling the organization that solicits donations for his particular handicap and find out where to go for evaluation and placement. If you or other relatives pass away before he does, he cannot be left without support and a home. Perhaps an Elder Law Attorney can advise, too,
Group homes may be better than NHs. But there are wait lists. In an emergency, he might end up in a NH. Best to investigate first with his local social services who should inform if you need to get more professional paid assistance. Best to start early before it is too late
Also know that some group homes are better than others. I know quite a few friends who either currently or in past have lived in group homes, and some have been not so great while others they’ve loved. Point being if one turns out to be not so great, don’t let that make you give up on the idea. Just keep looking. They can be a wonderful way to have some safety and help, while also feeling as independent as possible, even if only a little, depending on the persons abilities.
Be sure who has proper legally assigned POA for him. Contact a licensed SW and/ or an attorney for help as needed getting the legal aspect for who can make decisions for him in place. Then, contact the PCP or get one for him and request that a Social Worker be assigned to him; a Licensed SW can help determine next steps and options and potential facilities for placement. It is wise of you to start this process now.
My Brother Lived in a group Home in Massachusetts on Cape Cod , MA. I think they fall Under Nursing Homes . National Institute for the mentally Ill or social services should be able to help you find One . They are Pretty good homes and Offer Rides, celebrate holidays and have a day program .
My friend’s brother lives in a group home in Massachusetts and has for his whole adult life which is a blessing bc their mom, with whom he lived for extended periods, esp during covid, very recently died. I think the rules vary by state but I suggest contacting an organization in your area that can guide you thru the process. Adult Protective Services might be a good place to start. Then, I would not wait for a crisis—death or disability of the current caregiver—to find a good place for him. Start that search as soon as you understand your/his options. A group home offers your brother his own community of friends, probably a job. When my friend’s mom recently died, her brother’s group home housemates and care staff came to the memorial. It was the first time the brother smiled! (It was an incredibly moving moment to see these mentally disabled men all together there offering support.) He was comforted by his friends. Some of these guys lived together for over 30 years. They are their own kind of family. Yes. You will need to choose carefully and be involved in overseeing his care, but he will have a fuller life. Wishing you peace in this process.
So agree with WendyElaine's point to start now in seeking what the next placement will be. An Elder Law Attorney could provide lots of assistance to you in determining all the "POA" type of powers you need. I understand the feelings of "guilt" as you love your brother, but "failure to act and plan ahead of time" would be the only true source of neglect. Seek Attorney advice, reach out to organizations that oversee Group Homes, depending upon your brother's handicap. If you begin looking now and have a plan in place, you are then being the responsible sister you are called to be. If you were struck down tomorrow (stroke, pulmonary embolism, etc.), what would become of your brother? Making plans NOW as though your brother needed placement very soon, is the responsible way to go.
I'm sorry for the passing of your mother. For as long as your brother can stay with the other relative, that might be best for him, that is if the relative is fine with it. If and when it turns not to be okay, a group home would most likely be the best, which social services should be able to help you with. My neighbor's mom passed away, leaving her special needs son without care. His sister became his guardian, but she lives out of state. It's been a real s**t show over there. Homeless people come and take advantage of him, living in his yard and house, using drugs, trashing the property, and being very noisy. They all got thrown in jail a few months ago, then another group showed up. He comes to ask for my help, but all I can do is call the police for him. Nothing happens from that. Next time he comes over to ask my help I'll call APS. I'm telling you this because it seems the agency his sister hires for caregivers is obviously not looking out for my neighbor. If you are given caregivers by medicaid or whatever, be sure a family member can check on your brother's care consistently. My neighbor wishes to go into a care facility, but his sister just keeps the same ol' same ol' going on over there. I feel so sorry for him.
How well you, Artist Daughter, articulated the nightmare scenario of what happens with no plan in place and no responsible adult or agency to make sure the special needs person is NOT being taken advantage of. "Checking on" special needs persons demands that someone in close proximity (not out of state) be available to do unannounced 'drop ins' for checking.
So sorry for the loss of your mother. What was your parents’ plan for your brother after they were gone? Was it every discussed? I found it never is, no one ever wants to talk about the elephant in the room.
Apply for Medicaid and go the group home or NH route.
This is a rough situation. I know first hand how hard this is.
By SSI do you mean supplemental income? Brother should be on Social Security Disability with Medicare and Medicaid.
I have a physically challenged nephew. I am lucky he can live on his own with some overseeing. Thru the Dept of Disabilities I was able, thru the State, to get him a housing voucher, a coordinator and an aide 5 hrs a week. The aide does household chores, takes him to appts takes him shopping and runs errands. Where I live there are no group homes. There are people that are paid by the State to care for challenged people in their homes.
If you cannot care for ur brother nor the person who is caring for him now, your only option is Medicaid paying for a group home or a NH. If you have no POA or guardianship, letting the State take over his care maybe ur only alternative. I am 74, my nephew will be 34. His future means Dementia because of a neurological problem. When that happens, I will not be able to care for him. So he will go to a NH.
In my 'old' neighborhood, we had 3 group homes for people who were mentally challenged. I believe they were privately owned, but I'm not sure.
A couple lived there 24/7 and CG's came each day for some of the residents, some worked and were collected by a group bus. I know they ate meals together and socialized as best they could--There were 4-5 residents at any given time and I always felt that they were happy & cared for.
Of course, varying degrees of competency, as you would find in such a place--but overall, I believe it was affordable and gave a measure of independence to the residents.
The homes were kept immaculately, which was a concern to us as neighbors, but the yards and such were always pristine.
Maybe you can check around your neighborhood and see what may be available for your brother. I know for a fact that several of these men were on SSI as their only form of income.
Wow. Very difficult. As in very, very, difficult. I would call out to all involved. Is there an SSI social worker? Is there a local Council on Aging in your area? Dependent of the affliction your brother suffers are there local organizations, group homes, and etc? Could you call APS to let them know that the Mother has passed and the son is in need of care, group home, housing and whatever. I can't imagine your quandry and I know there are places to reach out, just would not know myself where to start and I hope others here do know. I do know that a call to APS would give you perhaps some leads to follow up?
I surely do wish you the very best and I hope you will come to AC for whatever you learn on this difficult journey is going to be of great help to others.
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The community facilities are usually semi-detached ‘double unit’ houses, with 6 bedrooms and space for the support workers. The residents have each other as ‘family’, and with staff support they take part in whatever community facilities are appropriate – including sheltered workshops which provide other ‘friends’ and a small income. Only people who need nursing care would go to a Nursing Home.
The people whose parents have insisted on keeping them at home have given these adults a very very restricted life - for decades in many cases. ‘Just give them a TV’ is too close to the truth in too many cases. Expecting other family members to follow the same line is unreasonable from all points of view. Sure, it’s a shock to leave the very little world they have been confined in, but no-one in the family should feel forced to continue with what their parents have done.
"I can’t stand the thought of putting him in a home" is NOT the only or even the right way to look at it. You don’t ‘inherit’ a sibling with disabilities!
That you for your post. It sounds like you live in a country that actually cares about its citizens. Sadly in the USA, there is very little done for developmentally disabled adults. But there is plenty of money to be found for weapons and for funding wars.
The other cousin was born with severe cerebral palsy. When he was born in 1961, it wasn't apparent anything was wrong until he didn't crawl or talk. Likely had birth trauma. We'll call him Mike.
So, Anna is an only child. Her father did the best he could, but her mother had mental illness and their family was just a dysfunctional mess. Neither made plans for her future. Mother died unexpectedly and then father was too old to do much besides get through the day. When he died, no one knew what to do. She'd scream and get violent over almost nothing, was very hard to manage, and needed close monitoring. Finally a social worker found a group home and she is required to be on psych medication while living there. It's been a win-win. She's calmer and doing fine. The home also has a supervisor there 24/7.
Mike was not expected to survive childhood. He got physically bigger and harder to take care of, and his father (and their two other children) said he needed a facility. His mother wouldn't hear of it, and later had two heart attacks from the physical and mental strain of caregiving. Father died and finally they had to place Mike. His mother got dementia and they were roommates in the facility. Both did well there. His mother died a few years ago now and he is still in the same facility. He's well taken care of and has the 24/7 help he needs.
Point being, you have options. Group home is probably best, but if that's not an option, a nursing home isn't a bad thing either. Just like any place, there's good ones and bad ones and you need to do your research. Please don't rule out a nursing home if it means he gets the care he needs.
In hindsight the expectations the family had for this woman’s future should have been discussed prior to our marriage. I was a stupid kid who just turned 22 and wasn’t thinking about the long term future. I thought my in laws would start thinking about placing her in a group home sometime soon. I take some responsibility for the situation, I should have really thought this through and I probably would have ended our engagement. She has a lot of issues and demands a lot of attention of her brother. An hour with her every now and then is enough. Having her around 24/7 would drive me nuts.
My refusal to take care of her has caused a huge rift in the family and I feel responsible for that.
It was selfish and irresponsible for MIL to expect you or her son to care for her. It was her job to make sure sister would be okay, and she did nothing. There is no excuse for parents not making plans, and there's no excuse for a parent to just assume a sibling will take her in and do it all. And with you being female, guess who would be expected to take over bathing, changing clothes, and toileting?
As I mentioned in my own reply here, I have a cousin with severe cerebral palsy. He has two siblings. Their parents never expected or assumed their other kids would take him in and be 24/7 caregivers.
I would refuse too, and the rift is due to mother's lack of planning, not you. But I'm sure most family members think you should have taken it on with a smile!
https://dbhdd.georgia.gov/dd-community-based-services
Where I am in Oz, the old institutions for people with intellectual disabilities were closed down in the 1980s because of new ideas about ‘community support’. Small group homes were set up with funding but management associations to run them, and with various built-in supports (for example to use the bus system to get to a sheltered workshop). It wasn’t all smooth sailing – for example one committee I knew tried to stop residents going outside on their own in case of liability and insurance issues! I worked with lots of the associations as part of my management support work. Some parents insisted on keeping their adult children at home, often the same people who had refused using the institutions, but it’s not common and wasn’t encouraged. The life is too limited - smother love.
There may be nothing like this in the USA, but I would be very surprised because there are hundreds of families involved. My suggestion would be to find the association that is relevant to your brother’s ‘mental handicap’ – there is bound to be one, especially if it’s common like Downs Syndrome – and find out the options from them. They will have the knowledge and the expertise. This is not one to do on your own!
Yours, Margaret
That's the 1980's for you. The third worst president in our history Ronald Reagan shut down most of the large, residential facilties for people with intellectual and psychiatric conditions in favor of the 'community support' option. It sounds good in theory, but in practice is a disaster.
Mothers (fathers other family) of children with special needs have a tough role.
Many will help them become as independant as is possible, including assiting them to move out & into a group disability house.
But many won't. Prefer to protect or take on all the care themself. Some may see it as their responsibility for life. Without a future plan, these adults can be left stranded - as you know first hand.
I would look for a good social service, an experienced social worker who works with adult disability. Meet with all the key people, your sibling, your relative, you. Let everyone have their say. State want they want. Go from there.
Not every want or wish will be met. Compromise is often made.
It may take many weeks/months to find a new path, a new home.
Strength to you for this journey.
Then, I would not wait for a crisis—death or disability of the current caregiver—to find a good place for him. Start that search as soon as you understand your/his options.
A group home offers your brother his own community of friends, probably a job. When my friend’s mom recently died, her brother’s group home housemates and care staff came to the memorial. It was the first time the brother smiled! (It was an incredibly moving moment to see these mentally disabled men all together there offering support.) He was comforted by his friends. Some of these guys lived together for over 30 years. They are their own kind of family.
Yes. You will need to choose carefully and be involved in overseeing his care, but he will have a fuller life.
Wishing you peace in this process.
Apply for Medicaid and go the group home or NH route.
This is a rough situation. I know first hand how hard this is.
Good luck.
I have a physically challenged nephew. I am lucky he can live on his own with some overseeing. Thru the Dept of Disabilities I was able, thru the State, to get him a housing voucher, a coordinator and an aide 5 hrs a week. The aide does household chores, takes him to appts takes him shopping and runs errands. Where I live there are no group homes. There are people that are paid by the State to care for challenged people in their homes.
If you cannot care for ur brother nor the person who is caring for him now, your only option is Medicaid paying for a group home or a NH. If you have no POA or guardianship, letting the State take over his care maybe ur only alternative. I am 74, my nephew will be 34. His future means Dementia because of a neurological problem. When that happens, I will not be able to care for him. So he will go to a NH.
A couple lived there 24/7 and CG's came each day for some of the residents, some worked and were collected by a group bus. I know they ate meals together and socialized as best they could--There were 4-5 residents at any given time and I always felt that they were happy & cared for.
Of course, varying degrees of competency, as you would find in such a place--but overall, I believe it was affordable and gave a measure of independence to the residents.
The homes were kept immaculately, which was a concern to us as neighbors, but the yards and such were always pristine.
Maybe you can check around your neighborhood and see what may be available for your brother. I know for a fact that several of these men were on SSI as their only form of income.
Good Luck!!
I would call out to all involved. Is there an SSI social worker?
Is there a local Council on Aging in your area?
Dependent of the affliction your brother suffers are there local organizations, group homes, and etc?
Could you call APS to let them know that the Mother has passed and the son is in need of care, group home, housing and whatever.
I can't imagine your quandry and I know there are places to reach out, just would not know myself where to start and I hope others here do know. I do know that a call to APS would give you perhaps some leads to follow up?
I surely do wish you the very best and I hope you will come to AC for whatever you learn on this difficult journey is going to be of great help to others.