Filing Guardianship for Your Autistic Adult Child

Filing Guardianship for Your Autistic Adult Child

filing for guardianship for autistic adultI was over on My Five Men, reading her random thoughts post.  In it, she mentions having to file for guardianship of her eighteen year old autistic adult child.  I was like, WHAT!  I have to file for guardianship of my son when he turns 18?  I think it was mentioned at an autism conference I went to, years ago.  I completely forgot about it.  My son was just a little boy back then.  I didn’t need to think about that.  I had bigger issues to think about at the time.

Now, my son is 13 years old.  He is still low functioning and completely nonverbal.  There is no way he will be able to take full control of his life when he turns 18.  I still have time before I have to officially worry about this, but time has a way of passing by quickly.  What other things do I need to start thinking about now.

When My Autistic Child Becomes an Autistic Adult

When my son becomes an autistic adult, is he going to live at home?  Will he be able to live in a group home?  Would I want him to live in a group home?  I’ve heard so many horror stories of facilities and group homes.  I’ve heard a few good things, but not many.  I know there are some out there, but how do you figure out which are good and which are bad?

Back to filing for guardianship for your autistic child.  Have you done it?  What did you have to do?  Do you have to hire an attorney and go to court?  And what about Power of Attorney?  If I get guardianship, than I don’t need Power of Attorney, right?  Not that my son can sign a Power of Attorney, but in five years that might change.  A lot of things could change between now and then.  I want to be prepared if they don’t.

How about SSI and Medicaid?  Don’t those change when he turns 18?  Will I be back on the red tape parade with them to get him benefits and coverage, or will they roll over?  My head is spinning.  Now I remember why I placed all of this on the back burner.


21 comments to Filing Guardianship for Your Autistic Adult Child

  • Tammy, I cringe to think about this for my son, too. Besides just trying to deal with the frustrations and difficulties of right here and right now, to think about even the possibility of stepping into a sea of red tape regarding guardianship makes me woozy. However, being prepared on the front side is easier than playing catch up. I appreciate you bringing this topic up for thought and discussion. I look forward to the comments of others.

    • Tammy

      Thanks Holly. I agree about being prepared. I just need to take a deep breath and dive into it this week. I don’t have to get all of my answers at once, since I have five years to go. But with the way laws are always changing, I need to keep up on it, in case they decide to make a change that parents like me will need to fight.

  • Wow — I can’t imagine being faced with all of this. I thought about it the other day at PetSmart. An elderly man — probably in his 70s — was there with his middle aged (possibly in his 50s) disabled son. The son talked with me and my kids, about the dogs in the doggy daycare, and then I watched him go back to find his dad. And, I wondered how terrifying it must be for the father (and mother if she is still alive) to wonder about his son’s care the older they both get. It has to be overwhelming.

    I wish I had answers for you, but I agree with Holly — preparing now is going to be better than waiting.
    Rachel @ Following In My Shoes recently posted..I Took A Bite Of The Apple

  • Our family does not have this specific issue – autism – but we have been through this. I have a brother who lives in a group home. He is not high functioning. He has limited verbal abilities. My sister has guardianship over him and the power to make all his decisions. Someone has to do it. In your case you as the parent will have to deal with this. Better start looking at these things now before it is necessary.
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  • I can’t imagine having to think through all this. Good luck with all your decisions.
    Crystal @ Simply Being Mommy recently posted..It’s Time for the H-E-B Meal Maker Challenge

  • I didn’t realize that you’d have to do this, but it makes perfect sense. You’ve got a lot to think about and plan.
    Zipporah Sandler recently posted..Heading Dr. Azari off at the pass – Oral B

  • I’d want my child with me as long as possible…not sure what to do to be sure he is ok after I pass though…I wish there were more compassionate group homes for autistic adults.
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  • That is a LOT to think about. {{{hugs}}}
    Jenn recently posted..Sweet T Turns Two! {Blue Bunny Giveaway Ends 8/20}

  • My brother has dealt with these things (my nephew has sever CP) with his son who is 22 now. I know it is a lot on your mind.
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  • ((hugs)) and good luck with everything you have to decide!
    Theresa recently posted..Mike the Knight

  • Such a hard thing to think about, I hope you’re able to figure it all out.
    Amanda recently posted..Today is My Anniversary!

  • Thank you so much for this post, it is not something parents like to think about, but unfortunately for us parents of children with special needs, we have to. As you said, being prepared will make it that much easier when the time comes. My daughter is only 2 years old now, so I really don’t know if I will one day have to do this, but I know it’s very likely with her condition. Good luck with everything, and best wishes to you and your family.
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  • It is a lot to think about. Before I was a blogger, I was a special ed teacher and worked quite a bit with teenage autistic students. Even though most public schools don’t talk about it much, they are REQUIRED by federal law to help you with this and other services. Special education with the federal government doesn’t end until they are 21, and in some states, not until the year 23. If you are in a school system that is rather incompetent though, I recommend working with a lawyer.

    As for group homes, some are better than others. I have worked with some that are so horrible its not even funny. Most parents don’t know that they can interview and work with homes. The best are usually pricy, but very welcoming to families. For example, my brother owns a home healthcare company that has a few years ago opened group homes. Rather than the traditional, they are a family atmosphere. Only four boys/men per house (depending on the age)with each having their own bedroom unless they are family. They go on field trips, work on life skills, and set up fun outings for family and kids. I know most group homes don’t do anywhere near as much as my brothers company though. He is very passionate and treats all the kids/adults with special needs as if they are family. If you are going to do the group home option, it is better to interview and find a place that is best for your son :)

    Sorry if I’m talking too much! I am a bit passionate since I worked with autistic kids for so long. I walked out of grad school with two specialies – juvenile delinquents and autism :)
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  • While our children are not affected by autism, we have done the paperwork to ensure their safety and well being should something happen to us. It’s so important to think about the “what if’s.”
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  • Thank you so much for this post! My son just turned 17 and filing for guardianship is probably the furthest thing from my mind! I just attended a meeting last week with a financial planner to try to assess how to plan for Cameron’s future in case of my untimely demise. (It was especially ‘fun’ since I have almost zero assets since my divorce!) They asked me a ton of questions about where my son would live as an adult but it never crossed my mind that I would have to legally register as his guardian. Thanks again for bringing this to my attention.

  • Mom of 4 boys

    Tammy, i am CURRENTLY going through this guardianship issue! I have been for years! My son is now 20 yrs old (time does tick away) and in a group home. It was 6 months before he was to turn 18 that I started the process of becoming his guardian.
    please e-mail me:) if want to.I have felt SO ALONE in this situation. i almost feel that i could be a lawyer at this point from how intense it has been LOL! I’m almost done with the finalization of becoming his guardian.

    • Tammy

      It’s great that you are almost to the point of finalizing it. I’ doing research on it, but I still have a few years before I can start the procedures.

  • cam

    Autistic daughter turned eighteen, parents obtained attorney filed for guardianship, court date after turned 18. Please advise on any issues or other issues may need to be addressed, in the state of Oklahoma.
    Thank you

  • jodi

    My autistic son will be turning 18 in april and I am so streesed out about doing his guardinship, does anyone know if I could do this myself? I am on disability myself and cannot afford an attorney, I have gotten the run around from legal aid, I have spoke with a attorney ans shes very sweet and knowledgeable but she saif it would be around 2000 dollars. My son is high functioning but cannot make legal decisions, he doesn’t have the social skills to be doing things like that. I am at such a loss can someone please “help” me, I am in the process of getting him into services outside ofschool as he I almost an adult but when it comes to guardinship they referred me to the attorney I spoke of earlier. Please someone help….thanks jodi

  • Monique

    jodi, I too was told it would be a lot of money but since my daughter had no assets all we had to pay was the court fee to file which was less than $70. The county paid the rest of the money. Now if she had a lot of assets the fees would have come out of that. We didn’t use an attorney we just went to the courthouse and filed for guardianship. I too was worried based on what I had been told and what I had read on the internet but I took a leap of faith and filed and we were granted guardianship two days ago of our daughter who is high functioning as well. Hope this helps.

  • [...] Filing Guardianship for Your Autistic Adult Child – Filing for guardianship for your autistic adult child. How do you file for guardianship for your child, and what other things change? [...]

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