What can I do about my mentally handicapped sibling after my mother passed? He is living with another relative that is older than me.
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?
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.
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.
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.
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.
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.
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 .
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
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,
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.
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.
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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.
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!!
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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.
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.
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.