When we're gone what happens to our ...

Discussion in 'Parent Emeritus' started by Smithmom, Oct 11, 2018.

  1. Smithmom

    Smithmom Active Member

    Disabled kids who can't care for themselves. There's a thread about our parents who need care. But some of us are caregivers for our adult children. Tiredout said that she has concerns. I have an adult son who will be left behind needing care. I've been pondering options. A Mom in my area started a support group about housing options for our adult children. So I've learned a lot about options around the country.

    Obviously this depends on the child's needs and the group represents a wide range of needs. Our town has about 3 dozen group homes of all kinds. This doesn't mean there's always a space open to fit the child when needed. In addition my town has at least another dozen options ranging from nursing homes to supported independent living to financially subsidized true independent living. Personally I'm hoping to set up something totally different customized to my son.

    Tiredout... It would be great if all our kids had sibs to take them in and care for them. 100 years ago that would have been the only option. Now families are smaller and that option often doesn't exist as it won't for my son. But I've noticed something else the last few years which took me by surprise. Many of my son's classmates at 18 were moved to group homes by their parents. Heaven knows I don't know the whole situations and don't make judgements. But it has surprised me in many cases. In fact, one situation I know quite well shocked me this week with this decision. Haven't even told my son that his friend has been moved to another state.

    But as with our parents and care facilities, it can be much better for the child to be with peers than at home. There are no right or perfect answers. But for our peace of mind investigating the options is key. And sometimes making the move before we're gone makes sense.

    Comfort comes from seeing that the placement works. Also that a sib will be named as guardian and will check regularly to be sure that everything is going well. Things, funding, staff, etc always change and a caring guardian is necessary. Whether this person also handles the money is a question. In most cases I've seen they do not. The facility collects from the govt and provides a small allowance to the child. If there is a trust for the child that is a different situation.

    I hope I can offer some ideas to anyone facing this situation.
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  2. ForeverSpring

    ForeverSpring Well-Known Member

    I dont think that legally a sibling can be named a guardian. Guardianship hapens in court. Disabled people have rights too. My autistic son is now seen as not needing a guardian any longer and court agreed and getting one requires that the adult is deemed disabled tobTHAT point by the legal system My daughter would gladly be Sonics guardian and will be there to advise him and has even said he can live with her family, but HE likes his apartment alone and the system is working for him. He feels more mainstram without a guardian. Judges are loathe ro give guardianship and no guardian can force an adult to listen to their wishes. Its not like that. We can get information but we cant force treatment.

    Those in supported living homes have rules to follow or they cant stay. I know that violence is prohibited. Drug use.

    A few of our mentally ill live in nursing homes where the care level is higher. Again, there are rules in order to stay there. There is from what I hear universal no violence, at least in the places here. You cant violate the rights of those orhers who also live there.

    A payee is easier to legally get than a guardian and more important in my opinion but again the person himself has a say. I know many with payees (none and most like having them. They are all on SSI or SSDI and most live in either group homes voluntarily or cheap apartments on Section 8.

    My son loves his apartment in subsidized housing in a very safe neighborhood. Nobody bothers him and he only pays 1/3 of his income and utilities are covered. But autism is not an iffy diagnosis in the eyes of the court system. You want help and follow the rules of the home, you get help. Yet independence too. He does call his case manager if he needs extra help. He is set for when we are gone.

    But in the 60s when the mentally ill were put out of hospitals and in the streets people with mental illness rather than say other disabilities like autism lost their main place to stay. Got civil rights even if they cant figure out how to care for themselves.

    If a mentally ill person doesnt want a guardian or to live in one of the area group homes and wont take medications or follow rules, then the person is very sadly on his own. Nobody can force the mentally ill to get treatment. Drug abuse is also a part of this.

    Maybe all states offer different services. I volunteer with the younger mentally ill in Wisconsin and if they use drugs they are not allowed to stay in state funded homes or apartments. There are rules you must follow.

    SSI or SSDI is mandatory here for ANY hands on services which means the adult must apply. We cant. And they can refuse services they dont like.

    I hate our system but to my knowledge, which is vast at least in Illinois and WI, there are rules and people have rights. Just like they can refuse medications at age 12. They can refuse help. Yes, I think it is barbaric.

    Maybe more progressive states on the coasts have better services, although I believe that the mrntally ill having rights is Federal but I dont know for sure.Check out what you CAN do with a lawyer. We have a special needs account for Sonic when we are gone or else he would have too much money to keep his services. This is important to do. If the adult has more than a set amount of money, all services are lost unless the inherited money is in a special account. We have his payee in charge of that too.

    This whole issue is a blight on our country in my opinion but we have to follow the rules. More importantly they have to...our adult kids. Even if they are psychotic and cant. They have rights and can refuse treatment. This includes my son but he is compliant.

    Check your state. As tou always remind the rest of us there are variations in state rules/laws. In Wisconsin our conservative govenor is tring to cut disability services. He hasnt yet but rules change too. I feel safe with my son having an autism diagnosis, but mental illness, which autism is not, is more in peril.

    I think letting mentally ill adults, especially with psychosis, go free on the streets is the same as Alzheimers patients doing so....but nobody asked me.

    This is a major issue. Check your state disability rights/laws. Of course if your kid moves he may move to different rules too. I have no idea.

    Leave no stone unturned.

    Love and.light!
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    Last edited: Oct 11, 2018
  3. Triedntrue

    Triedntrue Well-Known Member

    I don't have any additional information about this but it concerns me. My son will fall in the won't take medications and will be on his own category. He is capable of working but is bad at handling his money but will not accept help. He is smart and I hope will adapt. He is currently working and has an apt. and I hope he is able to maintain this. It is hard to accept that there is sometimes nothing that we can do.
  4. Elsi

    Elsi Active Member

    This question haunts me. I have no idea what happens to my two off the rails kids as they get older. They have not been labeled as officially disabled in order to qualify for any services, and will make no moves towards making that happen. They think they are fine as they are. They are not fine. I am really wondering if either of them will outlive me, or even live to see 40. If they do get it together enough to make it to their older years, they have done nothing to prepare for their own independence or retirement. I don't know what happens when waitressing, bar-backing, and other highly physical jobs in the service industry become too hard on their bodies as they get older. Their spotty job history and minimum wage jobs will leave them with little in the way of social security to rely on and nothing in the way of other retirement income. I'm scrambling as fast as I can to make sure my own retirement will be covered, and don't anticipate retiring until 70 or close to it. If I live too long or need long-term nursing care, there won't be any inheritance left for anyone - I'm just counting on being able to take care of myself in modest but comfortable circumstances. If I think too hard about what their lives will be like if they make it to retirement age it's painful. It looks like a grim future to me. And I'm not going to put the expectation on their siblings that they will take care of them after I'm gone.
  5. Smithmom

    Smithmom Active Member

    I have two other sons who also don't identify themselves as disabled. One a smart, capable addict. The other who might be labeled neurologically impaired. But he's capable of maintaining a part time waiter job for a year at a time. I have concerns about these two as well. Neither will collect any kind of social services. The latter has ADHD and impulsivity makes him hopeless with money.

    I've come to terms with the reality that I can't leave money to any of mine. I could leave a trust or annuity. The annuity would work best. Just a little bit of cash every month would provide food and utilities. They may use it inappropriately. But it wouldn't be so much as to support a drug habit or make them attractive to thieves.

    My real conclusion is that what they most need is housing. So I intend to find "permanent" housing for each of them. Nothing is ever permanent and no matter what I do they could mess it up. But if I can buy some sort of multi family housing owned by a trust I might be able to help each of them. Each needs a different setting. The one at home with me will need a group home on this property. The other two some kind of apartment. Maybe over a garage or maybe a duplex. Maybe a "tiny house" for each. I don't know yet. But this is what I'm thinking. Its very complex. Eg the behavior of the older two cannot affect the group home.

    I'm suggesting that we need to think outside the box for special needs situations.
  6. Smithmom

    Smithmom Active Member

    Elsi...yes, their future is their choice and we can't control it. But more than that I think we need to remember that what's important is that they have the life they want. Not the life we want for them or think they should have. So rather than grieving that they don't or won't have the life that we think is appropriate I prefer to focus on being happy that they have what they want. Eg my ADHD kid has no desire for a place of his own nor an interest in stability. I prefer to be happy for him that he is in a place today that he's happy with. I nest. I want permanency. Everything he owns fits into a couple of boxes and he's happy with that. Why make myself unhappy because he chooses a life that would make me unhappy? Why not be happy for him and save myself the anxiety?

    What you describe, which is also my son, might be called "working poor". This country was founded by what might be called poor farmers. There's a long history of working poor aging. Their generation is not the first. Certainly there are millions of retired working poor. Think of thousands of large trailer parks across the country. We might prefer to think of leaving behind wealthy children in long term happy marriages. But reality isn't that easy.
    Last edited: Oct 11, 2018
  7. Triedntrue

    Triedntrue Well-Known Member

    I fantasize about winning the lottery so i can buy each of my sons a house even though 2 are doing very well on their own. I know it is just a fantasy but....
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  8. Elsi

    Elsi Active Member

    Smithmom, that sounds like a great plan. I’m afraid my resources would never be enough to make that kind of difference. I started over basically from ground zero ten years ago. I have a lot of catching up to do just to have a secure retirement for myself, and if I happen to live as long as my grandparents did I’m not sure I’ll have have enough. (They lived to be 98 and 99.) I expect the house will have to be sold at some point to pay for my care of my partners. There definitely will be no annuities or substantial lump sums, unless I happen to die young.

    I really struggle with this. How can this be the life they want? I recognize that this is the life they seem to have chosen, or allowed themselves to fall into, but They are not happy - not at all. Who wants to be homeless? Who wants to be hungry? My daughter is selling herself for drugs and money. How can this be the life she wants?

    They say they want better. But seem unable to get to even a small amount of stability.

    I don’t care if they never have professional jobs or own a house or get married or achieve anything we might consider part of a ‘normal’ life. I can live with that. I just want them to have enough stability that I know they’ll have a safe place to sleep, enough to eat, access to healthcare. If it’s a tiny apartment or a rented room or a trailer that’s fine. But right now they can’t even do that. And it’s only going to get harder as they get older.

    No, it’s not. But their future looks very grim to me. Working poor in prior generations often had children who took them in in later years, or a church community to fall back on. They will have neither. And how long will they be able to keep finding jobs in bars and restaurants when they are no longer young and strong? Who will want to hire them at my age? I just don’t see an answer for mine that doesn’t end very badly. It’s hard to think about.
  9. Elsi

    Elsi Active Member

    Me too!
  10. ForeverSpring

    ForeverSpring Well-Known Member

    I have been on this forum at least a decade.

    Many parents who have posted in the forum have bought homes and other dwellings for their troubled and /or addicted adult kids. Almost always they ended up destroying the generous giftbofva home and end up being back on the streets. You need to keep up a house, pay taxes, not allow party friends to put holes in the walls, replace things that break etc. Keeping up a house requires a decent job.

    Elsi, do not feel badly about not being able to afford homes for C and S. They most likely would end up losing them in some way or destroying them. One parent here, who only posted a few times, was livid and devestated because her daughter sold the house for the money and spent all the money and was homeless again.

    Theblottery? Most lottery winners cant manage the tyoebof money they get and end up broke. Our kuds probably would too.

    You will do all you can while you are here. They will do what they can or are willing to do afterward. I agree that our kids who dont act happy and live desperate lives are not content. My own son is not homeless but he is very unhappy. He acts how he feels.....unhappy. But I have tried everything and all I can do is listen to him. When I leave he has made no friends...he will be alone. It makes me sad but I am all out of thinking of anything I could say or do to help. He refuses therapy, seeing a medical doctor and going places to make friends. I am releaved he has his own home, but he is so mentally fragile, he could lose his high paying job. Inexpect it. Then who will pay his high mortgage and fix things when they go wrong?

    We can only give what they will use well and take care of.

    I don't have a ton of money either. Please....you are doing all you can. And that is all anyone CAN do.

    This is enough.
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    Last edited: Oct 11, 2018
  11. Tired out

    Tired out Active Member

    My disabled son is physically disabled, he is full physical care. Cognitively he is fine. He doesn't have a guardian.
    I wish I would come across others like him. I am sure he would like to live with others like himself. Luckily he does have friends in his own age group that visit and a large on-line gaming community.
    There are a (very) few group homes in this area. Nothing appropriate for our son. A lot of the clients have behavioral problems along with being cognitively low functioning. Our son doesn't fit into the demographic. he does go to a workshop setting 3 days/week and does computer graphic design among other things. He can't stand it more than that , he can only tolerate the other clients in small doses. Living with them? No way.
    He is held back by his physical needs. In a perfect world, employers could over look those and there would be someone to take him to the bathroom and fix his lunch and help him with it.
    We are looking into college classes, I will have to be his aide.
    My goal is for him to live a happy productive life. He deserves it.

    He gets so angry about his difficult brother. .
  12. Copabanana

    Copabanana Well-Known Member

    In my state there is the department of rehabilitation. I was told that Regional Center also helps if disabilities started before age 18. *I think they help with aides. There are agencies like Center for Independent Living in Berkeley. They are the people that fought for and won the Americans With disabilities Act. There is an agency in Berkeley as well called Disability Rights. In my state which is California they will provide disabled people with advocates so that they can get all the education they need up to and including PhD or MD or Law Degree or whatever through the department of rehabilitation. And they are required by federal law to assist with whatever supports the applicant needs to do the job, including aides. They provide subsidies to employers and they find work.

    I think these are civil rights issues. That people get the help they need to function. In the same way buildings require ramps and access, people deserve by federal protections assistance they require to function. I just looked up the link for Disability Rights of California. There is loads of info there.

    Vision, Mission, Advocacy Principles | Disability Rights California
    If you are in the USA, even in another state, I believe CIL and Disability Rights will provide information and help with advocacy to some extent. At least they could advise you of resources in your own state.

    I know I must sound Pollyannanish. But somebody like you son, deserves every assistance, every support. He seems like a real delight. After all, it is the law. He deserves it.

    I lived in Berkeley many years. And this organization CIL was a magnet for disabled people. There were always many, many quadriplegics in motorized chairs maneuvering through the streets. And this was in the 80's. Before the ADA law.

    There is NO REASON in my mind why your son should not have EVERYTHING he requires to function to the extent he is able. Many of the law schools have clinics that focus upon advocacy for disabled people. These are free. This is how the attorneys to be learn this type of law.
    Last edited: Oct 12, 2018
  13. Smithmom

    Smithmom Active Member

    Tired out...this is really why I started this thread. Not every town is going to have every kind of group home. My autistic son has no behaviors and can't live with people who do. His childhood with his oldest bro has perhaps exasperated this. I can't answer what is available to you but I have learned that there is far more out there than we know. Perhaps you can start looking. Neighboring towns or counties? Perhaps there is a creative way to structure services. Perhaps health insurance would pay for an aide to come in several times daily for his physical needs. The purpose of Medicaid waivers is to keep people out of hospitals and nursing homes. So services can be provided in a home setting. Obviously we need to worry about whether such funding is permanent. But that's where sibs/ guardians come in.

    Something I had never heard of... There are non-profits running communal living homes near divinity schools. So divinity students have free housing and live with disabled adults. The benefits to both are obvious. Near me there currently is one such residence and they are working on fundraising for a second one in my town.

    Elsi, I have the same concerns about finances. But I think the creativity comes into play again. In my area, and I assume most, group homes pay rent. They don't own properties. I've heard of some non-profits that buy and rehab houses for purposes of group homes. But that's not in my area. My plan is to use the equity from my home as a down payment on a group home property owned by a trust I create. There would then be a mortgage payment by the trust similar to the rent paid by a group home. Obviously the numbers would need to be right.

    One of my back-up plans is to find other parents of children suitable as roommates for mine. Then work with these other parents to set up something permanent for our kids. There is another parent group here actively looking to set up some sort of community. This is as simple as buying a number of condos in a complex. There are also affordable housing programs here. These are typically funded by new building projects. There's an endless variety in how these work. But again, with town planning support, these can be structured to provide housing for the disabled.

    I know of one young man who purchased a 2 bed townhouse through an affordable housing program His SSDI will pay the mortgage. His family will oversee the situation and/or will offer free room and board to a roommate to oversee him. The program he purchased through owns a small % of condos and townhouses is recently built complexes. They only work with first home buyers, mostly divorced women with children. The home can only be sold back to them for resale to another family who meets their criteria. There is profit sharing of any increase in value and they pay for maintenance and repairs to be sure the property is maintained.

    SWOT. I fully agree that behavioral people are generally not responsible tenants or homeowners. This thread was not meant to be about those of our children. I believe that we can find solutions for these children but I agree that would not include buying homes for them.
  14. Smithmom

    Smithmom Active Member


    Again I think looking around might help your anxiety about elderly working poor. There are diners, restaurants, cafeterias who have elderly employees. Certainly there is employment discrimination. But there are also open minded employers.

    Certainly it is less common today that family cares for the elderly. But section 8 does not discriminate. With the Baby Boom generation needing more and more housing and services there are increasing options. Our children may refuse a disabled label. But when hungry they may agree to food stamps, meals on wheels, when homeless they may agree to public housing or section 8.
  15. Smithmom

    Smithmom Active Member

    Tired out.. Voc rehab won't provide an aide at work or school? Certainly in my state they do.
  16. Smithmom

    Smithmom Active Member

    Your thought about churches not providing assistance to the elderly got me thinking. My religion on a state basis has a social services agency that has group homes including for the elderly. They are also building housing complexes for the elderly. I know that religion is not a barrier to residence. Obviously most churches have volunteers who visit the elderly in various settings. I guess I'm saying that I don't think that church service to the elderly regardless of religion has changed a lot. Obviously I can't speak to every town but I suspect that any person who reaches out would receive help. Its probably the reaching out part that is the concern.
  17. Elsi

    Elsi Active Member

    Tired, working in an office may not be possible, but could he work from home with the right living situation and supports? I freelance from home. Graphic design, coding, writing, research, and data entry can all be done from home. If work is something he wants for himself and it would not interfere with his eligibility for support and services, it might be more possible than you think. My clients are all over the country and I do everything by phone and internet.

    I feel for you. You’ve got your hands full with your physically disabled son and that’s enough. You shouldn’t have to deal with another’s behavioral issues as well! I don’t blame your older son for getting angry with his brother. I’m angry on your behalf that he’s putting you through this too! Hugs to you and you son.
  18. Elsi

    Elsi Active Member

    Reaching out would be the concern. They both would qualify for food stamps and Medicaid now, but they are too disorganized and apathetic to make it happen. Or maintain a bank account, or keep track of a wallet with a food stamp card in it, or basically any other basic acts of self care and living in the modern world.

    When I was thinking of church support, I guess I was waxing nostalgic for the days when people were part of small tight communities and would just watch out for each other naturally, rather than through an official program of some kind. When the church ladies would band together and take turns checking in on Crazy Old Man Jones up the street just because he’s part of the community and that’s what you do. I know that world wasn’t perfect either, but life just seems so impersonal now. My wayward ones have no community, other than the street sand the drug dealers and users. What I fear is that they will both die alone on the streets. I guess they are not in the demographic you’re speaking of, that could be helped by ensuring that housing was available to them and an annuity of some sort, even if I could manage it. Even when I try to set them up in apartments or with roommates they can’t seem to make it work past a couple months. This last try with C lasted two weeks. If I can’t get them stabilized while I’m alive, I see no hope in helping them from the grave. Assuming they outlive me. That’s a big assumption with the path they are on right now.
  19. ForeverSpring

    ForeverSpring Well-Known Member

    Dont give up please on the physically disabled son. I want to share a happy story and one that must be possible elsewhere if it is possible in our small county that does not have many people so not well funded.

    There is a lovely young man who works in sales and technology for a place like Verizon. He is completely wheel chair bound and can not move from the waste down. He cant hold his head up normally either but he has a full time sustainable job. He is friendly, smart and knowledgeable and when we used that cell phone service we had him as the one helping us many times. He is still there with his beautiful smile.

    I have no idea how he got the job or if he needs help behind the scenes but he got any help he needs to work full time. I have spoken to him because we got to know him and while we NEVER broached his privacy about his disability he has shared that he loves the job, even the grumpier people who he deals with (with a smile) and that the pay and benefits are good. He knew our whole family as we were on the same plan and would always ask how my kids were doing. He knew about phones too!

    I assume he may have needed or still needs some assistance but not in the brain department! If this young man achieved this here I believe it is possible for all. I think many people get tired and give up when they are searching for answers. It can be hard and tedious to keep trying. My hat goes off big time to Smithsmom who is going over the top to make sure her son has a safe place to live his whole life. My autistic son also can not be comfortable with chaos, commotion drama and bad behavior. I bless the Universe that his apartment became available. It was a four year wait before there was an opening. It is a very nice private setting of apartments for adults with developmental disabilities, such as autsm, and no bad behavior is allowed. Most of the other residents are older than him but he knows them all from sports programs set up for differently abled people. He prefers not having lots of young people with their noise around him. So we got lucky. But we also never quit looking. This is just a regular place tp stay. It is not assisted living. There are no services. He knows who to call if he needs something. In our case we havent the money to buy or build but there ARE creative solutions as SmithsMom said.

    Smithsmom is just another hero for her adult kids!

    Kudos and thanks for reminding us all that if our adult kids are willing, there ARE good solutions. That includes those who dont have lots of money. Keep calling, keep looking, ask around.
    Last edited: Oct 12, 2018
  20. Copabanana

    Copabanana Well-Known Member

    Smithmom. Thank you for this thread. How would one get started researching group homes of this sort. I have tried to support my son with housing; that is I bought a house where he could live. He will not work with us. Or perhaps it is our fault; that we will not accept the way he lives. But the end result is that it has not worked.

    I do not know where to even start to try to find group homes or resources to help me do so. I believe I am overwhelmed emotionally by the situation and cannot get a birds eye view. My son behaviorally is charming and appropriate, in the main. He can live with other people. But he needs support and structure. He is currently homeless in another County in an area that should be rich with opportunities such as this. Who would I call? Where would I start?