Forums
New posts
Search forums
What's new
New posts
New profile posts
Latest activity
Internet Search
Members
Current visitors
New profile posts
Search profile posts
Log in
Register
What's new
Search
Search
Search titles only
By:
New posts
Search forums
Menu
Log in
Register
Install the app
Install
Forums
Parent Support Forums
General Parenting
Desperate and sad
JavaScript is disabled. For a better experience, please enable JavaScript in your browser before proceeding.
You are using an out of date browser. It may not display this or other websites correctly.
You should upgrade or use an
alternative browser
.
Reply to thread
Message
<blockquote data-quote="slsh" data-source="post: 694527" data-attributes="member: 8"><p>Hi Sad Dad - welcome.</p><p></p><p>Wow... you're facing something I've been avoiding for a very long time. My oldest (age 27) has severe CP, is totally dependent, nonverbal, tube fed, epilepsy, etc. We have not investigated group home settings for exactly the concerns you state - the most vulnerable of our kids are the most at risk of abuse. Additionally, we live in a state that does not provide services to kids or adults with daughter, generally speaking, and our goal is to live long enough to retire to a different state. <img src="data:image/gif;base64,R0lGODlhAQABAIAAAAAAAP///yH5BAEAAAAALAAAAAABAAEAAAIBRAA7" class="smilie smilie--sprite smilie--sprite1" alt=":)" title="Smile :)" loading="lazy" data-shortname=":)" /> Should we kick-off before then, brother-in-law is designated guardian... but to be honest, I'm not sure how he and his wife would be able to deal with our son's needs, and the state they live in isn't a whole lot better in terms of supportive services. I'm ostriching for now.</p><p></p><p>I do think getting in touch with ARC would be a good idea for you (do as I say, not as I do, LOL). At the very least, they might be able to give you an idea of what is currently available in your area *and* maybe put you in touch with other parents in the same boat (parent-to-parent contact has always been the most useful, in my experience). Also look to see if there are any adult advocacy groups - I can't remember the name of the one here in Illinois, but I do know that they've made progress in the semi-recent past in terms of making the state be more accountable for their provision (or lack thereof) of services to adults.</p><p></p><p>Because your daughter is 13, the school district is still responsible for educational services. Have they been helpful at all? Ours wasn't, but some are. She's coming up on 14, so they should soon be including transitional services in her IEP - can she work, either independently or in a sheltered environment? That's an issue that should be addressed in her IEP, and future living arrangements can (or rather *should*) be addressed in the IEP. It's been years so I don't remember the specifics, but I believe school districts are supposed to bring in the adult developmental disability agency for your daughter, though for some reason I'm thinking they may not *have* to do that until she hits 18 - but it never hurts to ask for it earlier. Maybe contacting an educational advocate would be helpful also. All states have a Protection and Advocacy Center, federally mandated, for children and adults with developmental disabilites. Regardless of whatever other diagnoses she may or may not carry, I would think the Downs would be the primary diagnosis, therefore developmental disability would trump all.</p><p></p><p>I've read several articles over the years of parents who have created villages around their developmentally disabled kids - bought homes, recruited other roommates of similarly abled young adults with like-minded parents, hired staff, found or created work for their kids, involved them in churches/temples/mosques, really integrated their kids into the community, so that when the time comes that the parents are gone, the kids will be well situated. It's not something I've investigated for my son because he's essentially quadriplegic and cannot work in any environment, could be considered medically fragile, etc., but... I can see it working well possibly for your daughter?</p><p></p><p>I truly understand where you're at. It's beyond stomach-churning to contemplate handing over the care of our kids to someone else, but .... realistically, it is something we have to plan for. Ugh.</p></blockquote><p></p>
[QUOTE="slsh, post: 694527, member: 8"] Hi Sad Dad - welcome. Wow... you're facing something I've been avoiding for a very long time. My oldest (age 27) has severe CP, is totally dependent, nonverbal, tube fed, epilepsy, etc. We have not investigated group home settings for exactly the concerns you state - the most vulnerable of our kids are the most at risk of abuse. Additionally, we live in a state that does not provide services to kids or adults with daughter, generally speaking, and our goal is to live long enough to retire to a different state. :) Should we kick-off before then, brother-in-law is designated guardian... but to be honest, I'm not sure how he and his wife would be able to deal with our son's needs, and the state they live in isn't a whole lot better in terms of supportive services. I'm ostriching for now. I do think getting in touch with ARC would be a good idea for you (do as I say, not as I do, LOL). At the very least, they might be able to give you an idea of what is currently available in your area *and* maybe put you in touch with other parents in the same boat (parent-to-parent contact has always been the most useful, in my experience). Also look to see if there are any adult advocacy groups - I can't remember the name of the one here in Illinois, but I do know that they've made progress in the semi-recent past in terms of making the state be more accountable for their provision (or lack thereof) of services to adults. Because your daughter is 13, the school district is still responsible for educational services. Have they been helpful at all? Ours wasn't, but some are. She's coming up on 14, so they should soon be including transitional services in her IEP - can she work, either independently or in a sheltered environment? That's an issue that should be addressed in her IEP, and future living arrangements can (or rather *should*) be addressed in the IEP. It's been years so I don't remember the specifics, but I believe school districts are supposed to bring in the adult developmental disability agency for your daughter, though for some reason I'm thinking they may not *have* to do that until she hits 18 - but it never hurts to ask for it earlier. Maybe contacting an educational advocate would be helpful also. All states have a Protection and Advocacy Center, federally mandated, for children and adults with developmental disabilites. Regardless of whatever other diagnoses she may or may not carry, I would think the Downs would be the primary diagnosis, therefore developmental disability would trump all. I've read several articles over the years of parents who have created villages around their developmentally disabled kids - bought homes, recruited other roommates of similarly abled young adults with like-minded parents, hired staff, found or created work for their kids, involved them in churches/temples/mosques, really integrated their kids into the community, so that when the time comes that the parents are gone, the kids will be well situated. It's not something I've investigated for my son because he's essentially quadriplegic and cannot work in any environment, could be considered medically fragile, etc., but... I can see it working well possibly for your daughter? I truly understand where you're at. It's beyond stomach-churning to contemplate handing over the care of our kids to someone else, but .... realistically, it is something we have to plan for. Ugh. [/QUOTE]
Insert quotes…
Verification
Post reply
Forums
Parent Support Forums
General Parenting
Desperate and sad
Top