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Ethical Dilemma
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<blockquote data-quote="slsh" data-source="post: 323967" data-attributes="member: 8"><p>My first thought is that it's time to have a serious discussion with- your parents about planning for sib's future, with the <u>focus</u> being that it is doing him a huge disservice to expect him to deal with- the loss of one or both parents *and* the stress of a new living situation at the same time. Knowing that a group home is the ultimate goal, the time to start working on those arrangements is now so that that transition will be completed hopefully long before he has to deal with the inevitable loss of your parent(s). To say nothing of the fact that group home living situations usually have ridiculous waiting lists and finding the right fit for your sib might take a while as well.</p><p> </p><p>I would also recommend, and I mean this very gently, that you and your spouse keep your opinions about what has taken place thus far to yourself. Criticizing their parenting of him is likely to make them defensive and less willing to hear your concerns. As the parent of a severely physically disabled adult child, I can't even begin to share the jumble of emotions that go thru my head at least daily when it comes to future planning for him. Logically, I *know* that we have to consider a group home or similar type placement for him and we ought to start doing it soon (probably should have started 5 years ago). Emotionally? Forget it about it. Mention group home to me and I break down in tears. The thought of him being at the mercy of others makes me ill. And that's how I think about it - him being at the "mercy" of others. Irrational, illogical, unrealistic... but still very real to me. And I've been consciously trying to work thru this for a decade at least. I still hope and pray that of his two youngest sibs, one will be willing and able to step in for husband and me when the time comes, which is of course incredibly unfair to our younger children. But even recognizing that and knowing in my heart that that is not right? Doesn't make the planning any easier. </p><p> </p><p>It is an emotional minefield - adult child with- disability, trying as a parent to do what you feel is best but at the same time when you're a 24/7 caretaker I think you inevitably lose perspective. I don't believe anyone will take as good care of my son as we do, and *nothing* is going to change my mind on that. I would guess that your parents might have a similar mindset, and it's going to be a bear to work with. I'm not saying it's even a valid belief, but it is what it is.</p><p> </p><p>As far as funding... well, we haven't gotten there yet. I do have a step-bro in his late 40s who is blind/autistic/deaf (his mom got German measles during the pregnancy) who lives in an apartment with 24/7 supervision, with the sole funding being SSI/state services and the special needs trust. State covers staffing costs, step-dad was landlord until he passed and now my mom is. SSI covers rent, some food. I believe he also possibly gets food stamps? Medicaid for medical. Since the whole point of the trust is that it can only be used after all federal and state funding has been exhausted, I don't believe it gets used that often. So it can be done, but I know my mom and step-bro's mother have been heavily involved in staffing and general care issues - a responsibility that will ultimately fall to my step-sis. If family members weren't there, I'm not sure who or even if those kinds of issues would have been addressed - to be honest, I think step-bro would have been institutionalized long ago because he is very challenging. </p><p> </p><p>My heart goes out to you - truly. It sounds like you may be put in a terrible position and you don't have to be. The trick is to get your parents to put the wheels in motion now and it may be that you are going to have to point-blank tell them that you simply cannot be responsible for sib's shelter and care when they're gone. They need to start this transition now because it is in sib's best interest. </p><p> </p><p>Again, I would very strongly recommend you keep your opinions about the course your parents have taken thus far out of it as best you can - what's done is done, it cannot be changed. Fault and blame and shoulda/coulda/wouldas aren't going to solve the problem. Keep your eye on the goal - suitable placement and services for sib, as he is now. </p><p> </p><p>Just speaking from my own control-freak, Type A personality, parent of a disabled dependent adult child perspective, what may nudge them in the right direction is the thought of someone else making placement and quality of life decisions about their son without their input. If you clearly take off the table the option of your sib living with you, and I can only imagine how difficult that conversation might be, it may prompt them to get plans laid out now. I think the last thing any parent would want would be for a state agency to make those decisions without our input.</p><p> </p><p>Thanks for posting here. <img src="data:image/gif;base64,R0lGODlhAQABAIAAAAAAAP///yH5BAEAAAAALAAAAAABAAEAAAIBRAA7" class="smilie smilie--sprite smilie--sprite2" alt=";)" title="Wink ;)" loading="lazy" data-shortname=";)" /> You got me thinking yet again about what I should be doing for my son, for all my kids, even though it makes me cringe.</p></blockquote><p></p>
[QUOTE="slsh, post: 323967, member: 8"] My first thought is that it's time to have a serious discussion with- your parents about planning for sib's future, with the [U]focus[/U] being that it is doing him a huge disservice to expect him to deal with- the loss of one or both parents *and* the stress of a new living situation at the same time. Knowing that a group home is the ultimate goal, the time to start working on those arrangements is now so that that transition will be completed hopefully long before he has to deal with the inevitable loss of your parent(s). To say nothing of the fact that group home living situations usually have ridiculous waiting lists and finding the right fit for your sib might take a while as well. I would also recommend, and I mean this very gently, that you and your spouse keep your opinions about what has taken place thus far to yourself. Criticizing their parenting of him is likely to make them defensive and less willing to hear your concerns. As the parent of a severely physically disabled adult child, I can't even begin to share the jumble of emotions that go thru my head at least daily when it comes to future planning for him. Logically, I *know* that we have to consider a group home or similar type placement for him and we ought to start doing it soon (probably should have started 5 years ago). Emotionally? Forget it about it. Mention group home to me and I break down in tears. The thought of him being at the mercy of others makes me ill. And that's how I think about it - him being at the "mercy" of others. Irrational, illogical, unrealistic... but still very real to me. And I've been consciously trying to work thru this for a decade at least. I still hope and pray that of his two youngest sibs, one will be willing and able to step in for husband and me when the time comes, which is of course incredibly unfair to our younger children. But even recognizing that and knowing in my heart that that is not right? Doesn't make the planning any easier. It is an emotional minefield - adult child with- disability, trying as a parent to do what you feel is best but at the same time when you're a 24/7 caretaker I think you inevitably lose perspective. I don't believe anyone will take as good care of my son as we do, and *nothing* is going to change my mind on that. I would guess that your parents might have a similar mindset, and it's going to be a bear to work with. I'm not saying it's even a valid belief, but it is what it is. As far as funding... well, we haven't gotten there yet. I do have a step-bro in his late 40s who is blind/autistic/deaf (his mom got German measles during the pregnancy) who lives in an apartment with 24/7 supervision, with the sole funding being SSI/state services and the special needs trust. State covers staffing costs, step-dad was landlord until he passed and now my mom is. SSI covers rent, some food. I believe he also possibly gets food stamps? Medicaid for medical. Since the whole point of the trust is that it can only be used after all federal and state funding has been exhausted, I don't believe it gets used that often. So it can be done, but I know my mom and step-bro's mother have been heavily involved in staffing and general care issues - a responsibility that will ultimately fall to my step-sis. If family members weren't there, I'm not sure who or even if those kinds of issues would have been addressed - to be honest, I think step-bro would have been institutionalized long ago because he is very challenging. My heart goes out to you - truly. It sounds like you may be put in a terrible position and you don't have to be. The trick is to get your parents to put the wheels in motion now and it may be that you are going to have to point-blank tell them that you simply cannot be responsible for sib's shelter and care when they're gone. They need to start this transition now because it is in sib's best interest. Again, I would very strongly recommend you keep your opinions about the course your parents have taken thus far out of it as best you can - what's done is done, it cannot be changed. Fault and blame and shoulda/coulda/wouldas aren't going to solve the problem. Keep your eye on the goal - suitable placement and services for sib, as he is now. Just speaking from my own control-freak, Type A personality, parent of a disabled dependent adult child perspective, what may nudge them in the right direction is the thought of someone else making placement and quality of life decisions about their son without their input. If you clearly take off the table the option of your sib living with you, and I can only imagine how difficult that conversation might be, it may prompt them to get plans laid out now. I think the last thing any parent would want would be for a state agency to make those decisions without our input. Thanks for posting here. ;) You got me thinking yet again about what I should be doing for my son, for all my kids, even though it makes me cringe. [/QUOTE]
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