Autism Child Care Connection Network
Advocacy and Support for Individuals w/Autism and their Families
What you need to do as your child with autism turns 18
There are 2 musts.
First if you have a son, you MUST, are required by law, to register him for the draft. There is a simple form at the Post Office for this and you need to do it. Our children are "in the system" and if you choose not to fill this out at 26 they can be fined up to $5,000. It can also affect them getting SSI or waiver funds or for higher functioning individuals college scholarships. It doesn't take long but it has to be.
The second signing up for SSI. NOT SSDI but SSI as a disabled adult, regardless of your income your individual with autism may be eligible for SSI payments. I say MAYBE because some higher functioning individuals may not qualify but 30 days before they turn 18 you can set up an appointment to have a disability determination made. Later in this thread I will give a list of the kind of information they want. Also SSA has a wonderful website that does allow you to do most of the paperwork on line and then you can send it to your intake person before you ever show up.
A third thing to consider is Power of Attorney or Guardianship. My son falls into the needs guardianship category. I did it without an attorney. Only because I thought I could. Some folks will feel more comfortable with an attorney and if you are looking for Power of Attorney instead there are more issues to look at. Late I will talk about what I did and what I had to put together.
This transition to adulthood is new ground and I wish I had someone to help guide me but I have been forging ahead and hope to help others find their way too.
First if you have a son, you MUST, are required by law, to register him for the draft. There is a simple form at the Post Office for this and you need to do it. Our children are "in the system" and if you choose not to fill this out at 26 they can be fined up to $5,000. It can also affect them getting SSI or waiver funds or for higher functioning individuals college scholarships. It doesn't take long but it has to be.
The second signing up for SSI. NOT SSDI but SSI as a disabled adult, regardless of your income your individual with autism may be eligible for SSI payments. I say MAYBE because some higher functioning individuals may not qualify but 30 days before they turn 18 you can set up an appointment to have a disability determination made. Later in this thread I will give a list of the kind of information they want. Also SSA has a wonderful website that does allow you to do most of the paperwork on line and then you can send it to your intake person before you ever show up.
A third thing to consider is Power of Attorney or Guardianship. My son falls into the needs guardianship category. I did it without an attorney. Only because I thought I could. Some folks will feel more comfortable with an attorney and if you are looking for Power of Attorney instead there are more issues to look at. Late I will talk about what I did and what I had to put together.
This transition to adulthood is new ground and I wish I had someone to help guide me but I have been forging ahead and hope to help others find their way too.
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Replies to This Discussion
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Permalink Reply by Susan F. Rzucidlo on -
Social Security payments for adults with disabilities.
As your child with autism in nearing 18 years of age it is time to apply for SSI. The determination will be done based on their income and their ability to work. SSI has a good website
http://www.socialsecurity.gov/ssi/
You can set up an appointment by calling the West Chester SSA Office.
Social Security Administration
Chester County
1101 West Chester Pike
West Chester PA 19382
610-431-0795.
or call their toll free number 1-800-772-1213
You can do this 30 days before they turn 18 or anytime afterwards. (*I waited until he was actually 18 just because I thought it would mean less paperwork but I can't tell you that is certain)
On that website it will tell you what documents you will need but I wanted to give you a bit more information that will speed the process.
They will want to see letters from doctors who write to attest to the level of disability.
Something that shows all of the Axis diagnosis. (my Pediatrician office gave me a copy of his "Health Record" that listed those.
Anything you have from a psychologist, psychologist, neurologist... They prefer information that is no more than 1 year old.
A copy of your IEP (REALLY!!!)
Anything from MH/MR
A reevaluation report
A copy of a bank statement
(there is more but look at the list on the website for a full list.)
They will be writing to your school, doctors, MH/MR supports coordinator.... to get the information. If you bring it with you
it will speed up the process.
Assuming your child's diagnosis is deemed a disability by SSA (and that can be different from the education or the medical world) within a couple of months your child will begin receiving a check from SSA. This is typically a "presumptive payment" and it can take 6 months for them to fully evaluate your adult child's disability and know that they could ask for those funds back if they later determine that he/she is not disabled under their guidelines.
Things to know****
Your child can have NO MORE than $2,000 in assets. They have a several year look back so it is best to burn those funds for your child's use before he/she is 13. They are allowed to own a few things like the house they live in or the car that transports them. but nothing else.
I'll write more soon.
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Permalink Reply by Nicole on -
Hi Sue,
Why is it important to pursue guardianship or power of attorney once your child turns 18?
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Permalink Reply by Susan F. Rzucidlo on
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Once your child turns 18 they are legally considered adults and even as a parent you will not have the legal authority to make medical, financial or vocational decisions for or with them (for if they need a guardian, with if you have power of attorney) Sometimes systems will allow you to continue doing so but if push came to shove you wouldn't be able to make those decisions AND you wouldn't be permitted to have personal information such as health issues provided to you because they are legally adults.
I have been called by one family whose 20 yr old daughter had an ovarian cyst burst and the hospital appointed a medical guardian because the girl was unable to give consent even though the mother was available.
For higher functioning individuals PoA allows you to protect them from being taken advantage of financially. There are a lot of good reasons to get this legally in place. I'll find a resource to point you to and post it.
Susan
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Permalink Reply by Susan F. Rzucidlo on
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This is from PA DRN's website. They have a wonderful handout on Power of Attorney. Families should read this and the one on Guardianship before making a decision as to what should be done, if anything.
They can both be found at www.drnpa.org/publications/estateplanningguardianship
What is a Power of Attorney?
A Power of Attorney (POA) is a written document that allows you to appoint someone to become your agent in order to give the person authority to act on your behalf. When you appoint an agent the person must exercise his/her authority for your benefit and in accordance with your wishes. Whatever decisions and business transactions that your agent makes on your behalf will become just as binding as if you made them yourself. Therefore it is important that you choose an agent you can trust.
What is Guardianship?
GUARDIANSHIP
UNDER WHAT CIRCUMSTANCES MAY A GUARDIAN BE APPOINTED?
A Pennsylvania court may appoint a guardian of the person and/or of the estate for an individual who lives in Pennsylvania and a guardian of the estate for a person who has property in Pennsylvania if it determines after a hearing that the individual is “incapacitated” (previously referred to as “incompetent”). An incapacitated person is:
[A]n adult whose ability to receive and evaluate information effectively and communicate decisions in any way is impaired to such a significant extent that he is partially or totally unable to manage his financial resources or to meet essential requirements for his physical health and safety.
As you can see they are two very different procedures. Ben needed to have a guardian. Many adults with autism can do very well with a PoA.
More soon
Susan
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Permalink Reply by Nicole on
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Thanks for posting. My oldest is eleven and I am just starting to think about transition, I never even considered that someone might challenge me when it comes to medical information or care decisions, but given my luck I would probably be in the same situation as the parent you mentioned above.
Nicole
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