have you saught legal guardianship of your special needs son or daughter?

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Posted 7/31/2013 by SDeven in NSBR Board

Love Letters Pea

PeaNut 65,852
January 2003
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Loc: Nashville, TN!

Posted: 7/31/2013 9:26:28 PM
Ds is autistic and has a seizure disorder. Our family therapist has recommended that we go to court and have ourselves appointed as his legal guardians before he turns 18.

I had never previously considered this action or heard of other parents of autistic sons and daughters taking these steps.

If you've done ot, how did it go? Was it a long process? What do you wish you had known?


PeaNut 86,501
May 2003
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Loc: McKinney, TX

Posted: 7/31/2013 9:42:04 PM
My autistic son is 11, and we plan on getting legal guardianship when he turns 18. Sorry I can't offer any real world advice as we are not there yet.


a scrappin gal

PeaNut 208,960
June 2005
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Loc: Somewhere

Posted: 7/31/2013 9:46:39 PM
I have for my disabled brother. My mom passed about 12 years ago & my dad was in his 80,s when I decided to go for it, as I knew it was only a matter of time before he became my responsibility. Not to discourage you in any way, but for me, the process was a nightmare. It took me just short of 3 years from the time I visited my lawyer to the time I received my actual documentation stating I was his guardian. I had to have him declared incapacitated since, at the age of 45, he was not able to be re-evaluated to prove to the courts he was disabled (makes no sense since he was declared disabled since birth, but I had to have paperwork 5 years or newer). Anyway, being declared incapacitated means only he can't make sound judgements for himself and/or he is a threat to himself. It is just legal jargon simply.

I had to be fingerprinted and fill out a bunch of forms, which was the easy part. Waiting for the courts to do their thing took a while, waiting to get an appointment to appear for the judge was a long time & finally getting the document took an eternity.

Living in NYS, I have to fill out a yearly report documenting every penny of his (he gets SSI), which then gets reviewed by the courts, they may or may not do an audit ( once I had to provide additional proof of several transactions). But I got the record keeping down to a science, so it's not that bad any more, just a bit time consuming.

As for the positive side, I can now bank for him, make doctor appointments for him, speak with Medicaid/Medicare, Social Security, etc. without a bit of a hassle ( to be safe, I keep my paperwork with me when I speak in person and have sent copies to be kept on file at the doctors office, etc.)

It is a bit of a hassle, but doable and completely worth it in the end. Just keep good records and stay on top of things.

If you want to ask any questions, PM me.




PeaNut 269,170
July 2006
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Loc: USA

Posted: 7/31/2013 9:49:49 PM
My patents have power of attorney for my sister as she is special needs. Socially she is fine but IQ wise she is not, so decisions regarding her medical care and work my parents make. (She has a say of course, but she doesn't understand much legal stuff).

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PeaNut 371,264
April 2008
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Loc: St. Louis

Posted: 7/31/2013 9:55:01 PM
MY MIL has it for my BIL who is in his 50s and autistic. She had never done it and the bank got new staff. People started questioning her cashing his checks and pushed her to make it legal. She filled out papers, had a social worker to the house and hired a lawyer. She had to go to court but it went smoothly. The process cost her about $2800. They also set up my SIL as a back up for when MIL can no longer care for BIL.


PeaNut 167,693
September 2004
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Posted: 7/31/2013 10:21:22 PM

My patents have power of attorney for my sister as she is special needs. Socially she is fine but IQ wise she is not, so decisions regarding her medical care and work my parents make. (She has a say of course, but she doesn't understand much legal stuff).

Power of attorney is similar to, but not the same as, guardianship.


PeaNut 47,423
August 2002
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Loc: North Texas

Posted: 7/31/2013 10:28:14 PM
We are in the process of doing this. Do you happen to be in the DFW area? I can recommend someone if you are. Anywhere else I would ask some of the parents of your sons friends and see where they got it done. Working with special needs trusts, wills, guardianship, SSI is very tricky and sometimes counter intuitive.

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PeaNut 107,627
September 2003
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Loc: the looney bin!

Posted: 7/31/2013 10:37:44 PM
My DS is 11 and has autism. One of our behaviorists mentioned to me that if it was something I was considering doing that I needed to start the process early.

We live in Cali where it is difficult to get conservatorship for anyone over 18. If they turn 18 during the process it makes it more difficult.

She recommended to me that we start between 16-16.5 to give us enough time.

I would like to believe that this would not be a permanent arrangement for DS since he is pretty high functioning. But I also don't believe that at 18 he will be in a position to totally be self reliant in a lot of ways that other 18 year olds would be.

It's compromise that moves us along!

pynk E

PeaNut 48,314
September 2002
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Posted: 7/31/2013 10:46:45 PM
We started to do a desk application for our two adult sons with autism but we decided to hold off until our 3rd son is 18, which is in 2 years. This way we can add him as an alternate guardian and won't have to apply multiple times.

The desk application is long and tedious paperwork. Using a lawyer costs around $2000 CDN. Not sure how it works in the USA.

So far we haven't found anyone, from medical to government, who will not discuss our sons with us. I have joint accounts with both boys and am listed as their informal trustee. I really only want guardianship for the rare case where the police are involved. If that should occur I want the right to see my sons and advocate for them.

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PeaNut 45,166
August 2002
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Loc: somewhere in TX

Posted: 7/31/2013 10:53:50 PM
I have an autistic son and I guess I'm not really understanding why I have to be his guardian when I am legally his parent. It's late for me so I may just not be understanding due to lack of sleep

sunny 5

PeaNut 472,024
June 2010
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Posted: 7/31/2013 11:07:38 PM
when he is 18 and an adult, you will have no say about his life, his finances, medical issues, etc. the parent loses all but emotional power.


PeaNut 45,166
August 2002
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Loc: somewhere in TX

Posted: 8/1/2013 1:00:51 AM
ugh something else I don't have the funds to do guess I need to start asking around
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PeaNut 4,208
May 2000
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Posted: 8/1/2013 1:45:55 AM
My son is severely disabled and i have guardianship. He is now 21 but i started the process when he was 17. It wasnt that difficult of a process if done before 18. I was told by the university hospital that if i did not have guardianship they would have to assign him an advocate. I wasnt taki g that chance so i did it. I have also needed to fax the papers when dealing with insurance and give copies at the hospital, pharmacy, bmv for wheelchair plate. Also, if your child has an iep, the school may want a copy.

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PeaNut 157,667
July 2004
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Loc: Upstate NY

Posted: 8/1/2013 6:20:01 AM
I did a few years ago because once they turn 18, 'technically", we have no say over their healthcare, etc.

I found it quite easy. I had a lawyer quote a price of $2500, which I felt was way too much. It's really crazy that we have to get guardianship of our own children. It goes through the Surrogate court in NY. The lady that worked in that office was very helpful. The forms were online that I needed. It requires a lengthy background check on both my husband, our daughter and myself. We had to list all of the addresses that we had lived for something like 20 years...I can't remember how many but it was a bunch. Once that gets cleared, a guardian ad lightum (sp?) Is appointed. That attorney visited our house to see where he lives. If I remember correctly, we went to court 3 times. The first to state our case, the second (I can't remember why) and then the last one to grant or deny it. It took about 6 months. I would suggest that when you do this, you also apply for an alternate guardian. It will save having to have your alternate from going through all this again. We have our daughter as alternate, the reason she had to also pass a background check.

We applied for just me and our daughter. That left my husband so that he could serve the papers on the guardian ad lightum. Otherwise, you'd have to pay someone to do it. Even though our son doesn't have any money, and won't, I applied for both body and money. In NY, we have to declare any money once a year. We had to declare two banks for them to check. You will also have to pay the lawyer that is the guardian ad lightum. Ours ended up to charging us anything.

ETA: for clarification, I didn't use a lawyer. I did all the paperwork myself. Oh, and you'll need to bring your child to court. I didn't have to bring him when I first filed, but did the second so the judge could see him and speak with him, plus the time the guardianship was granted.

Love Letters Pea

PeaNut 65,852
January 2003
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Loc: Nashville, TN!

Posted: 8/1/2013 9:17:39 AM
Thanks everyone.


PeaNut 245,864
January 2006
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Loc: Centerville, Ohio

Posted: 8/1/2013 9:20:12 AM
I am the legal guardian of my 20 year old son, who is on the moderate-severe end of the autism spectrum, has a seizure disorder, and who also has mental retardation. In our state guardianship is granted through the county probate court and each county does things a little bit differently. Our county has all the necessary forms available online and I was able to download them, fill them out, and file without an attorney, although we did have our attorney check out the forms for completeness before I filed them. Our county judge heavily favors a single guardian, rather than letting both parents be co-guardians, so my husband is not a guardian.

My son had to be served with legal papers by the court investigator, who talked to him and then filed a report with his opinion that my son did need a guardian. In our case, it is obvious to almost anyone that he needs a guardian, he is clearly unable to make any decisions about his own care. He did not have to appear in court.

Our process was simple, I filed the papers with the court and was assigned a court date. Our doctor filled out a doctor's report and that was also filed with the court. The court investigator filed his report. I went to my court date and gave sworn testimony before the magistrate. I was granted guardianship that day. I have a legal notarized form called a guardianship letter that I carry which is all that is necessary in Ohio to give permission for medical purposes and other official duties that I have. Joe's school, various doctors, the pharmacy, bank, and probably some others, have all made a copy of the guardianship letter for Joe's file. I have to file a report with the court every two years.

Where we live, parents are automatically legal guardians up until the 18th birthday. I filed my paperwork requesting guardianship on Joe's 18th birthday, and my court date was about 5 weeks later. During those five weeks when Joe was legally an adult with no guardian, we did not have any emergency events which required my permission. In my county, if there is an emergency, you can generally get an emergency guardianship within 24 hours. Joe needed a surgical procedure and I did have to provide the guardianship letter for that, but we knew it was coming and we scheduled it for a time when we knew the guardianship process would be complete.

I am involved in a number of groups of parents of children with autism from all over the country and in speaking to them I realize our process in Montgomery County, Ohio, was very very easy compared to some other jurisdictions. I would advise you to start looking around and asking questions in advance so you know the process in your area.



PeaNut 223,228
September 2005
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Loc: Very Small Town, VA

Posted: 8/1/2013 9:32:00 AM
Yes, it has been recommended for us to petition the court for legal guardianship of our son. My son is only 13 so I have a bit of time but not much as it can take up to 2 years in the court system.



PeaNut 537,586
January 2012
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Loc: Southern CT

Posted: 8/1/2013 9:41:37 AM
Wow...it is amazing how everyone's experiences have differed. Our son was born with down syndrome and then at age 8 had the additional diagnosis of autism. I am not sure if our experience was made easier due to the fact that he was part of the state's department of developmental disabilities or not.

Prior to him turning 18 we went to our town's probate court and began the process of guardianship for him. He was appointed his own attorney (which we did not pay for). We have conservatorship of Brandon. We are able to make all his decisions, legally, medically, educationally, etc. The decision of conservatorship vs. guardianship was made by the courts and his attorney. Each case is individual. Good luck with it.

We also went and signed him up for social security disability at age 18 so he had his own money. We then went to the department of social services and began the process of Title XIX so he could get medicaid to pay for his day program and his homehealth aid.

Good luck.


PeaNut 574,604
December 2012
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Posted: 8/1/2013 9:46:36 AM
I would recommend getting the process in motion before the 18th birthday.

I am watching someone go through this right now with her 25 year old son. It's been an emotional and financial nightmare and she's been denied guardianship twice because her son can talk a good game in the whopping 15 minutes the social worker and judge spent with him. She was told to stop bailing himo out of his medical and financial messes, which are caused by his inability to think beyond THIS moment. He truly cannot manage to think beyond, at most, today and ends up in all sorts of financial jams (and dangerous situations). The judge told her to just "write him off because he's old enough to know better." The point being that he might be chronologically old enough, but will never have the mental/emotional maturity to know better. She deeply regrets not getting guardianship earlier.

It's all just nonsense anyway!

PeaNut 97,456
July 2003
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Loc: California, NY & Orlando

Posted: 8/1/2013 10:20:37 AM
We did for both our profoundly autistic children when they turned 18.

This was something we not able to handle pro se, we had to get an attorney. I can't remember whether it cost $7,000 for each of them, or $7k for both of them, whatever it was it was pretty expensive. We are co-guardians. Florida has several levels of guardianship, and the courts prefer the least restrictive be appointed in each specific case (hence the need for an attorney to help on through the process)

Because our children have trust funds we are required to make full financial reports, to the court, on an annual basis, showing how their trust funds were used. Because they still live at home and have not used their trust money at all, those reports are fairly simply right now. Should they ever move into a care facility and the trust be used to pay for their care, then the court reports will ramp up significantly.

Right now whenever we have to make decisions regarding their care, we have to present guardianship papers (medical decisions etc)

Without guardianship, and because SN kids stay in high school until age 22, after they turn 18, the school is not required to notify you of IEP meetings, any involvement of the local police should your child get into trouble at school. If they get into an accident, no one is required to contact you etc. I'm not sure why anyone would choose not protect their child under such circumstances.


PeaNut 97,686
July 2003
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Posted: 8/1/2013 10:58:56 AM
I have legal guardianship and conservatorship of my DD. It was a very easy process. I had her medical records and met with an attorney. I had to hire an attorney for her. The whole process was very easy. I met once with my attorney, she met once with her attorney (along with me) and then we went to Court. My attorney spoke, her attorney spoke briefly, the judge looked at the paperwork and granted me my petition of guardianship and conservatorship.

The mechanics of it was easy, emotionally it was very hard. It was just one of those times that reality smacks you and you can't hide behind it. I am not saying that I always live in la la land, but, I go through life taking one day at a time and really don't look at my DD as disabled first. I look at her as a person with a disability.

Couple of cute things: First, when my DD's attorney was talking to her and explaining that we were "giving her more time and experience to make her own decisions" my DD looked at her and explained, "Yes, I do have trouble making decisions." Then when we were in court and everything was done and as we were walking out, my DD turned around to address the Judge. We all were standing there in shock as she said, "Your Honor, Thank You!" The Judge smiled!

BTW - It cost a total of $2000.00. I did this before I went to apply for Social Security for my DD. It made that process tons easier!


PeaNut 203,642
May 2005
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Posted: 8/1/2013 11:12:30 AM
My parents never applied for guardianship of my brother until he was 40 (in 2004). He had an attorney to represent him ($800), but my parents didn't have to pay anything. The process was pretty uncomplicated, and they were granted guardianship and named "conservators" after a 5 minute hearing. They were applying for a "waiver program" (?) for him when they discovered that they had no legal rights to do anything on his behalf.

For 22 years, my parents signed for him for medical care and financial matters, and no one EVER said a word about guardianship. They would have done it long before that if it had ever been an issue.


PeaNut 101,443
August 2003
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Posted: 8/1/2013 11:15:07 AM
We have medical and financial guardianship over our 25 year old son. He has NF and doesn't understand anything legal or medical. We wanted to protect him with his finances and be able to make medical decisions for him. We did have to go to court, but he was the only one with an attorney. He told the courts he wanted us to have the guardianship. We never had to say anything. It was a very simple process and it didn't cost us anything at all. His lawyer was free. Each year we have to submit his financial records, just so the courts know that his money isn't going straight into our pockets, but that's all we have to do.

Love Letters Pea

PeaNut 65,852
January 2003
Posts: 29,505
Layouts: 385
Loc: Nashville, TN!

Posted: 8/1/2013 7:27:34 PM
Thank you everyone for sharing.

We have consulted a family law attorney who has done quite a few of these. Cost is about $2500 and the process takes about 6 weeks w 2 trips to court. We have to make the petition than a guardian ad litem (sp?) will be appointed by the court to investigate the best interests of the "child".

That person reports back to the court and the judge issues a decision.

I never considered that we would need this but it makes total sense. I honestly never thought of his as disabled but differently-abled. I want him to be as self-sufficient as possible, but he does have limitations. Tinks, I can totally see the emotional component. It will be yet another reminder that he won't launch out into the world on his own as others do.

Thanks again for sharing. It's a little less intimidating now.

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