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When they are not able to live independently....
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<blockquote data-quote="slsh" data-source="post: 419385" data-attributes="member: 8"><p>MWM - we are facing the same thing with- Boo. I do not expect one of our able-bodied kids to take on the responsibility of having him live with them, but I do hope they will play an active role in supervising his living situation to make sure he is well cared for once we're gone. </p><p></p><p>For now, he lives at home, and that is the plan until we retire and move (and we're just crossing fingers that our bodies hold out that long). At that point, ideally I'd like to find a group home (not institution or nursing home, though that is the level of care he requires) that does more than feed, change, and wash him. I want him to have a good quality of life, but he is 100% dependent on those around him, which makes me queasy when I think about delegating that role (recent elder abuse-cam case in point). Because IL is *not* where we wish for any of us to end our days, I really haven't spent a whole lot of time looking into what is available here. I do know there is 1 excellent program in the city, but again, waiting list is measured in decades.</p><p></p><p>There was someone *many* years ago, I think on the board though it could have been the our-kids listserve, who had... don't quote me 'cuz memory is failing, but I think she had twin boys with autism. They were young, less than 12, but she was already networking with- families in the community and making plans to purchase a home where they could live as adults with peers, with supports provided not only by the state but by the collective group of families as well. It was really quite a remarkable plan, well thought out, and didn't depend solely on state-provided services. A village concept at its very best. </p><p></p><p>I think if you're looking at a group home setting or assisted living, you need to start investigating now and get his name on lists. There are some good programs. I was told we needed to put Boo's name on a list by age 12 in order to hopefully secure him a spot in his mid 20s. It was simply beyond comprehension to me - not the wait, but the thought of him living with- "strangers". Does that make sense? My impression is that for an adult who has some functional skills, the availability of placements isn't as scarce, but you definitely need to look at what is available. </p><p></p><p>I do think conversations with- your other kids re: who would be willing to assume role of guardian (not just in name, but making sure that your son is being well cared for) is a good idea. Hopefully it will be a group effort between them all.</p><p></p><p>It's a huge weight, worrying about the well-being of an adult child who will not be able to care for themselves. I think I'm still ostriching it a bit.</p></blockquote><p></p>
[QUOTE="slsh, post: 419385, member: 8"] MWM - we are facing the same thing with- Boo. I do not expect one of our able-bodied kids to take on the responsibility of having him live with them, but I do hope they will play an active role in supervising his living situation to make sure he is well cared for once we're gone. For now, he lives at home, and that is the plan until we retire and move (and we're just crossing fingers that our bodies hold out that long). At that point, ideally I'd like to find a group home (not institution or nursing home, though that is the level of care he requires) that does more than feed, change, and wash him. I want him to have a good quality of life, but he is 100% dependent on those around him, which makes me queasy when I think about delegating that role (recent elder abuse-cam case in point). Because IL is *not* where we wish for any of us to end our days, I really haven't spent a whole lot of time looking into what is available here. I do know there is 1 excellent program in the city, but again, waiting list is measured in decades. There was someone *many* years ago, I think on the board though it could have been the our-kids listserve, who had... don't quote me 'cuz memory is failing, but I think she had twin boys with autism. They were young, less than 12, but she was already networking with- families in the community and making plans to purchase a home where they could live as adults with peers, with supports provided not only by the state but by the collective group of families as well. It was really quite a remarkable plan, well thought out, and didn't depend solely on state-provided services. A village concept at its very best. I think if you're looking at a group home setting or assisted living, you need to start investigating now and get his name on lists. There are some good programs. I was told we needed to put Boo's name on a list by age 12 in order to hopefully secure him a spot in his mid 20s. It was simply beyond comprehension to me - not the wait, but the thought of him living with- "strangers". Does that make sense? My impression is that for an adult who has some functional skills, the availability of placements isn't as scarce, but you definitely need to look at what is available. I do think conversations with- your other kids re: who would be willing to assume role of guardian (not just in name, but making sure that your son is being well cared for) is a good idea. Hopefully it will be a group effort between them all. It's a huge weight, worrying about the well-being of an adult child who will not be able to care for themselves. I think I'm still ostriching it a bit. [/QUOTE]
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