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Turning 18


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#1 bethben

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Posted 23 February 2017 - 06:45 PM

My son with severe disabilities is turning 18.  To celebrate, the county, the state, and the federal government thought I should have a bunch of paperwork to fill out.  Let's just say that when all is said and done, there will easily be over 100 pieces of paper filed somewhere.  While I'm thankful there are services to support him, a lot of it seems overkill.  He's a 30 second look at him to figure out he's disabled.  But no...we need to prove it on paper which isn't too difficult, but a lot of paperwork to fill out.  A lot of people are involved in proving he's disabled.  I wish I could just get everyone in a room and say, "Look, he's disabled."  It would save time and state/federal resources.  I know they are trying to avoid fraud, but there's just some people that disability is a given.  Also, I had to answer questions such as "If your son was involved in a romantic relationship, how much support would he need to fulfill that relationship?"  Ahhh...full care - from finding said romantic relationship to actually getting him to interact with his intended to even making sure he doesn't grab her hair because he wants her attention.  Ridiculous, but she had it on her form and it had to be asked.   It's a special time here.   :glare:


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#2 OhElizabeth

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Posted 23 February 2017 - 10:16 PM

Do you fill it out once and done? My ds qualifies with the county, but they redo it every 3 years. With younger kids, sometimes they float in and out of qualifying. Maybe for adults you get it and are done?

 

Well congrats on getting to this mountain peak of paperwork! :)



#3 bethben

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Posted 23 February 2017 - 10:57 PM

I really have no idea if I'm "done".  I'm assuming there is some sort of checks and balances.  Every year, I've had social workers of some sort coming out to my house to re-assess him.  I figured with homeschooling, if anyone ever decided to report me for whatever, I already had a team of social workers and mandatory reporters coming to my house to back up my story.  Anyway, I think once I'm done with this paperwork pile, I will be done with the bulk of it with updates yearly.  

 

We have to apply to be his guardians.  That's the bulk of it.  There are also court fees and other fees associated with that, including an up to $500 fee for someone to assess him and proclaim him disabled.  The kid is in a wheelchair, can obviously not walk by himself, says 10 words and phrases only, and has the education of an 12-18 month old.  Yes, look at him, spend 30 seconds with him, he's disabled.  I think once guardianship is done, it's done because my son would have to apply to remove us as guardians which at this point would be impossible.  There is social security stuff which I have no idea what that means for him (they asked me how much rent we would charge him to live with us...what?!?!)  or us and a state waiver service.  I've become a live in the moment kind of person and when people say xyz needs to be filed next month, I just do that.  I've never planned for him at 18 years old because with him especially, we can't even plan what we don't know.  So, we live in the day.  My son has never bounced in and out of any service because he is really disabled and never made it past any thresh hold of "normalcy".  So, he's always qualified.  


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#4 bethben

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Posted 23 February 2017 - 11:01 PM

As an aside- the school district has evaluated him every 3 years.  They string a long list of people to assess him and proclaim him still eligible for special ed. services.  Again, time and money would be saved with the "get everyone in a room, spend 30 seconds with him" and figure out he still qualifies.  But, they have to do the same assessment for everyone to make it cohesive.


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#5 Crimson Wife

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Posted 24 February 2017 - 02:33 PM

:grouphug: :grouphug: :grouphug: :grouphug:

 

I am so with you on the stupidity and time inefficiency of all the red tape. I get that they want to make sure only those with legitimate disabilities qualify for help, but with permanent disabilities it's not like the individual is going to recover the way someone with a back injury or whatever might.


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#6 frogger

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Posted 24 February 2017 - 05:35 PM

Do you fill it out once and done? My ds qualifies with the county, but they redo it every 3 years. With younger kids, sometimes they float in and out of qualifying. Maybe for adults you get it and are done?

Well congrats on getting to this mountain peak of paperwork! :)



Hate to disappoint but no there is always reevaluation even with something genetic like my brother's Down Syndrome. My step -mom just had to take him in for psych evaluation and fill out a ton of paperwork. He is 34 and has had the same Chromosomes since birth.
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#7 Canadian Mom of 2

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Posted 24 February 2017 - 06:16 PM

I'm so sorry you have to deal with all this!

:grouphug: :grouphug: :grouphug:

Edited by Canadian Mom of 2, 25 February 2017 - 04:40 AM.


#8 OneStepAtATime

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Posted 24 February 2017 - 06:26 PM

:grouphug:  :grouphug:  :grouphug:



#9 kbutton

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Posted 24 February 2017 - 07:04 PM

There is social security stuff which I have no idea what that means for him (they asked me how much rent we would charge him to live with us...what?!?!)  or us and a state waiver service.  

 

There are reasons for that, but I don't know what they are--I think it has to do with releasing the funds somehow. Some friends were talking about it the other day. Their child gets a waiver for semi-independent individuals, and they had to figure the rent thing also. I didn't catch the significance, just that they were stuck doing it.

 

Each state sets the requirements for their waiver program, and then sometimes, it's up to the county also.

 

Hang in there!

 

I hope the paperwork goes quickly. 



#10 Kinsa

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Posted 26 February 2017 - 07:18 PM

I'm dreading when my son turns 18, for exactly the reasons you stated here. My sons disability isn't obvious, but he will never be able to live independently. It's going to be a royal pain in the buttinsky.

#11 bethben

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Posted 26 February 2017 - 07:32 PM

I'm dreading when my son turns 18, for exactly the reasons you stated here. My sons disability isn't obvious, but he will never be able to live independently. It's going to be a royal pain in the buttinsky.

 

Kinsa, start saving every document from any professional that's ever seen him.  I agree with you...a royal pain.  I've told my sister to get her 10 year olds chromosomes tested (she most likely has something - not sure what) so that her paper work can go a little more smoothly.  By the time her daughter is 18, she should be able to have some ability to read, write, and do math, but with her issues, she will never live alone.  


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#12 scoutingmom

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Posted 26 February 2017 - 10:26 PM

:grouphug: :grouphug: :grouphug: :grouphug:

I am so with you on the stupidity and time inefficiency of all the red tape. I get that they want to make sure only those with legitimate disabilities qualify for help, but with permanent disabilities it's not like the individual is going to recover the way someone with a back injury or whatever might.

Not sure about in the States, but in Canada a veteran amputee needs to prove their durability every 3 (I think) years. Yup, got to go to the doctor to prove that a new leg hasn't gotten in since last time....


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#13 bethben

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Posted 27 February 2017 - 04:38 PM

Not sure about in the States, but in Canada a veteran amputee needs to prove their durability every 3 (I think) years. Yup, got to go to the doctor to prove that a new leg hasn't gotten in since last time....


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My guess is that they want them to prove they're still alive.  I'm sure there are plenty of people who died yet are still receiving benefits that someone without the disability is receiving.



#14 cherylswope

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Posted 27 February 2017 - 10:21 PM

In the same boat here. It seems that in our state they formally reassess at age 5, 18, and 22. I just learned this, because our adopted twins with disabilities (both with schizophrenia, medical conditions, autism spectrum) turn 22 soon.

 

In addition to this periodic assessment, we are required to complete annual paperwork, annual financial statements, annual reports, annual meetings, and annual phone calls. A tip: The first year, save copies of your forms as templates for all of the remaining years. The first year is by far the hardest. The rest is merely tedious. :)

 

In our state, we must also update with a phone call regarding any change (e.g., if someone begins working anywhere, no matter how part time, even if only at the local sheltered workshop). However, as someone mentioned, this provides access to services now. For me, this also provides a measure of security knowing that they are firmly known by "the system" and can receive services if anything happens to me.

 

Another tip: If you are also conservator (we are both guardian & conservator for both children), open a separate account just for this purpose. This has made the annual accounting much easier.

 

When we approached our twins' 18th birthday, I found little information, so I jotted down 9 Tips for Navigating the Process of Guardianship, in case anyone else might find this helpful.

 

Cheryl

 

Simply Classical: A Beautiful Education for Any Child

 

 

 


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#15 Ottakee

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Posted 28 February 2017 - 09:26 AM

We have done this with our older 2 and are appealing the denial for our younger dd.

 

My first tip is to get the guardianship first and then apply for disability.  If I had done it in that order instead of applying for disability before our guardianship hearing things would have gone much smoother.  Right now we are 16 months into an appeal and waiting for a court date in another 4-6 months.  All of our paperwork says she is disabled, her specialists say she is disabled, etc. but one person at disability didnt' think so after 5 minutes.

 

We also just did those 2 hour long questionnaire interviews for all 3 two weeks ago.  All of those questions about if they............what would they need.


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#16 cherylswope

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Posted 28 February 2017 - 04:54 PM

 

 

My first tip is to get the guardianship first and then apply for disability. 

 

Yes! Prior to age 18, prep for obtaining guardianship before the child turns 18.

 

As soon as you obtain guardianship/conservatorship (if applicable), begin the process of applying for disability.

 

Each step assists the next.

 

Another unfamiliar aspect of this transitional period can be taking your young adult to visit daytime placement options. Visit the local adult day programs, sheltered workshop(s), or talk to any adults your child might already know about opportunities for employment, even if only a few hours a week.

 

Consider continuing homeschooling too. Both of mine wanted to continue some formal lessons at home, so we gradually transitioned from full-time to part-time homeschooling to more relaxed independent study.

 

Also (learned the hard way), find out when insurance stops funding therapies. If you can continue OT, PT, Speech, etc. up to or through 21, you might want to plan for these more intensively prior to their rather abrupt cancellation.

 

Many options ....


Edited by cherylswope, 28 February 2017 - 05:01 PM.


#17 Ottakee

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Posted 28 February 2017 - 05:02 PM

Try to prepare for the guardianship hearing on the 18th birthday or the very first available date after that time.  In our county we had to apply about 4-5 weeks early (and have the paperwork and proper current testing done) before the date we needed a court date.


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