Continued Tutorship/Guardianship

Tracie Stroud

Tracie Stroud

Active member
It's probably called different things in different states/countries, but has anyone here gotten one for their intellectually disabled kiddos? It basically renders them as a permanent minor legally. Our attorney filed one today for our 17 year old who is moderate/severe autistic. It has to be done before they're 18 or it's a much more complicated and expensive process. We knew it was coming of course, but I'm having a really difficult time with the stark, legal reality that he will never be able to be independent.
 
I just spent Saturday having a conversation about my son's prospects for independence and it was a gut punch so I can only imagine how hard it must feel to have to take legally binding steps. Sending so much love your way.

We have no idea what the future may hold for my 7 year old because he's such a unique case but I'm interested to hear how things work out for other people. Does Louisiana at least have programs to assist you? (Florida's Agency for Persons with Disabilities has a 10+ year wait list and oof.)
 
Brendazzle said:
Does Louisiana at least have programs to assist you? (Florida's Agency for Persons with Disabilities has a 10+ year wait list and oof.)
Click to expand...

Ugh. It's not great here. We have the state Office for Citizens with Developmental Disabilities that's supposed to handle all of that and they're... yeah. He's been on a respite care wait list for more than a decade. He gets a (very) small stipend each month from them but that's literally it. Everything we do, therapies, doctors, etc. is out of pocket for us. The state just passed Medicaid for disabled kids a year or 2 ago but the kinks are still not worked out. We applied a while ago and it's still processing.

Lots of hugs. Sometimes the unknown can be more difficult to deal with than anything.
 
I have a friend that had to do this with her son. He has Beckwith-Wiedemann syndrome. Mental retardation being the biggest factor. He is a big boy though. He is about 6'3" and super friendly. He has the mentality of a 5 or 6 year old maybe. Love that kid and so thankful my kids grew up with him. She did it right before his 18th birthday. He just turned 24 in October. The doctors and court gave her a hard time at first because they want to ask him questions about the situation and he just looks at you and smiles. He will say "You ok?" I know it is tough having a kiddo like that, I can't even imagine. :) It is more common than you think. Just thankful that the kiddo has a great person to take care of them.
 
Kimberly27 said:
I have a friend that had to do this with her son. He has Beckwith-Wiedemann syndrome. Mental retardation being the biggest factor. He is a big boy though. He is about 6'3" and super friendly. He has the mentality of a 5 or 6 year old maybe. Love that kid and so thankful my kids grew up with him. She did it right before his 18th birthday. He just turned 24 in October. The doctors and court gave her a hard time at first because they want to ask him questions about the situation and he just looks at you and smiles. He will say "You ok?" I know it is tough having a kiddo like that, I can't even imagine. :) It is more common than you think. Just thankful that the kiddo has a great person to take care of them.
Click to expand...

Yes this is very close to our situation. He's right at 6' and super strong. Cognitively he's about preschool level, maybe a little higher. Our attorney says we shouldn't have any issues given the documentation we have, like his IEP's and a letter from his life-long pediatrician confirming what we're claiming. Hopefully he's right. He does this pretty often, so we don't expect any issues. It's a pretty easy process here if it's done before 18 and there's plenty of documentation.
 
In New Zealand we had to become his agent when dealing with government organisations and Guardianship for all other legal things. We did this when he was 16 for the first one and 18 for the second one. medically we decided not to because his life was short and I was always with him and also he was covered by our public health system My sons cognition was as a preschooler.
 
Here in PA you don’t file for guardianship until after 18 and we are in the process right now for our son who turns 18 soon.
 
Sending you all big hugs as you deal with these challenges. I have a friend who is navigating this and struggling.
I'm assuming that my brother and sister-in-law went through this process with their youngest daughter (who is now 42), although maybe laws were different then. I know that they have pretty much spent their entire lives advocating for her needs, through school and beyond. It's been a labor of love, but also incredibly challenging. Intellectually, she's probably at about age 8. While she's not truly independent, she lives in a home that my brother and SIL manage as a nonprofit, called A House for ME. They knew that they wouldn't be around forever, so they needed to figure out how to best take care of Dana, since the wait list for housing here in Maine is ridiculously long (as I'm sure it likely is in many states). Anyway, Dana and another woman live in the house with a caretaker. Dana has a full time job at a nursing home, where she has been for many years. Although she's never going to be truly independent, this arrangement has been wonderful for her and everyone involved.
 
Lori, I love how your family handled the situation. Imagine if I group of parents in Tracie's position got together and started a place like that which creates a safety net if they are no longer around and the ability to have time not with their child - which is also important for their own mental health.

lorigaud said:
Sending you all big hugs as you deal with these challenges. I have a friend who is navigating this and struggling.
I'm assuming that my brother and sister-in-law went through this process with their youngest daughter (who is now 42), although maybe laws were different then. I know that they have pretty much spent their entire lives advocating for her needs, through school and beyond. It's been a labor of love, but also incredibly challenging. Intellectually, she's probably at about age 8. While she's not truly independent, she lives in a home that my brother and SIL manage as a nonprofit, called A House for ME. They knew that they wouldn't be around forever, so they needed to figure out how to best take care of Dana, since the wait list for housing here in Maine is ridiculously long (as I'm sure it likely is in many states). Anyway, Dana and another woman live in the house with a caretaker. Dana has a full time job at a nursing home, where she has been for many years. Although she's never going to be truly independent, this arrangement has been wonderful for her and everyone involved.
Click to expand...
 
I don't have any personal experience but a person I work with is also a lawyer and this is one of her specialties. She has explained the legal process in Minnesota a few times to me. She said it usually goes pretty easy through the legal process.
 
tam65 said:
In New Zealand we had to become his agent when dealing with government organisations and Guardianship for all other legal things. We did this when he was 16 for the first one and 18 for the second one. medically we decided not to because his life was short and I was always with him and also he was covered by our public health system My sons cognition was as a preschooler.
Click to expand...

So many hugs. :hugs:
 
lorigaud said:
Sending you all big hugs as you deal with these challenges. I have a friend who is navigating this and struggling.
I'm assuming that my brother and sister-in-law went through this process with their youngest daughter (who is now 42), although maybe laws were different then. I know that they have pretty much spent their entire lives advocating for her needs, through school and beyond. It's been a labor of love, but also incredibly challenging. Intellectually, she's probably at about age 8. While she's not truly independent, she lives in a home that my brother and SIL manage as a nonprofit, called A House for ME. They knew that they wouldn't be around forever, so they needed to figure out how to best take care of Dana, since the wait list for housing here in Maine is ridiculously long (as I'm sure it likely is in many states). Anyway, Dana and another woman live in the house with a caretaker. Dana has a full time job at a nursing home, where she has been for many years. Although she's never going to be truly independent, this arrangement has been wonderful for her and everyone involved.
Click to expand...

Oh my goodness that's an incredible story! I'm so glad they were able to set that up for her.
 
lovely1m said:
I don't have any personal experience but a person I work with is also a lawyer and this is one of her specialties. She has explained the legal process in Minnesota a few times to me. She said it usually goes pretty easy through the legal process.
Click to expand...

That's great! It's so interesting how much it varies even within the states.
 
It's crazy to me that it's different in different states - what happens if someone moves across state lines?! When these processes take awhile with red tape it can delay job transfers etc. or separate families?! Seems to me it should be uniform within the same country, or at minimum allow for grace periods to file if not. It's difficult enough for families to navigate.
(((hugs))) to you all!
 
norton94 said:
It's crazy to me that it's different in different states - what happens if someone moves across state lines?! When these processes take awhile with red tape it can delay job transfers etc. or separate families?! Seems to me it should be uniform within the same country, or at minimum allow for grace periods to file if not. It's difficult enough for families to navigate.
(((hugs))) to you all!
Click to expand...

It depends on the state from and to, but there are usually fairly quick and easy legal paperwork options to transfer it to a new state.
 
You must log in or register to reply here.
Community platform by XenForo® © 2010-2026 XenForo Ltd.
Back
Top