October 28, 2016
If you have a child with autism, you may be wondering what happens when my child turns 18 and becomes a legal adult? What if they cannot make their own medical and financial decisions or read beyond elementary school level, much less understand and fill out forms most of us are routinely faced with? What if they haven’t “recovered” by 18 and can’t fully communicate, drive, make food, or take care of themselves? If they are not able to vote or own a firearm (if they choose to) like most adults are entitled to at 18 as part of their civil rights, is there something as a parent that I need to do? The answer to these questions is a big fat “yes!” And the legal process is yet even more buffoonery that you as a parent/legal guardian get to deal with. It would be great if there were an automatic exemption from the process for our kids, but there is not. So this is what currently exists. Allow me to share our lovely experience with you so you will know a bit about what to expect when that joyous day arrives.
My son Trevor turned 18 this past July. Over the past few years, I had noticed some posts on social media from autism parents a few years ahead of us discussing having to go to court to get “legal guardianship” of their adult child with autism. Excuse me? Am I not already his guardian? Now a court has to give me their permission? What kind of shit show is this? Maybe this is just your state, I thought. As my son’s 18th birthday approached, I learned that legal guardianship is a protective measure. If, for instance, my son had to go to a hospital as an adult, I wouldn’t be allowed in the room with him, to speak to the doctor, to make medical decisions for him, or have access to his records under HIPPA (Health Insurance Portability and Accountability Act of 1996), unless I was his legal guardian. Since he has a history of seizures (starting at 15, but none for over eight months now, yeah! See my seizure blog as to why), that was a huge concern.
Guardianship is a special legal relationship between two people created by the court. Guardianship trumps power of attorney. The guardian is given the legal authority to make decisions for another person who is unable to make these decisions for himself. The guardian is expected to ensure the safety of the person under guardianship, make their medical decisions, and if they are guardians of their estate, manage their money.
Many people get a lawyer to do guardianship paperwork for them. But since I didn’t have the money for an attorney and because I had petitioned the court in my state and filed for divorce without a lawyer in the past, I felt pretty confident that I could do this process on my own as well. In my state of NV, they have a self-help center and a law library at the courthouse that you can go to for forms and assistance, or even print the forms online, and then you have to e-file them at the courthouse. The people that work there are very helpful. It is a huge stack of paperwork, but we are used to that by now, aren’t we?
Part of the paperwork involves getting a doctor to fill out numerous pages of information on the person’s disability, rendering an opinion about their capacity. But the determination of incapacity is only made by the court. The person needs to have the mental ability to understand problems, make decisions, and communicate decisions. A guardian is necessary when a person is unable to make decisions, unable to manage personal, medical, and financial affairs, and has incapacity due to disease, injury, disability or mental illness.
As part of the process, you also have to give legal notice to other close family members that you are filing for guardianship, including the person you are filing to be the guardian of. I’m serious. This includes parents, grandparents, siblings 14 and older, (and children and grandchildren if applicable). The court calls them “relatives within the second degree of consanguinity.” So, yeah, I had to basically serve my son with autism and his 14-year-old brother with papers letting them know that I was filing for guardianship in case they wanted to go to court and contest it. Just, wow!
I understand why it is done this way. It is not just cases involving an adult with autism; all people filing for guardianship have to follow the same process. It is the same for anyone filing for guardianship of a person who does not have the capacity to protect his or her own property or interests, including elderly parents and family members. There are probably plenty of shady people out there trying to take property and assets from family members without the mental capacity to know better, and certain protocols are in place to protect them. They refer to people with legal guardians as a “ward,” but some states are trying to change the language to “person under guardianship” or “protected person.”
Once the guardianship paperwork is filed, and you have shown proof of service of the petition to relatives, a court date is set with a family court judge. It was about a month and a half after I filed that my court date was set. Because my son’s doctor (a chiropractic neurologist) wrote in his statement that it would be detrimental that my son attend the hearing, I did not bring him with me (the judge said she’d like to meet him someday). It would have confused him and stressed me out even more. I was the only one in attendance, no legal counsel, and no one came to contest my guardianship. The sad part to me was that his father did not want to be the co-guardian, but whatever. I have done most things on my own for my son, which is part of why I’m divorced in the first place. The hearing was very formal and intimidating. I wore proper courtroom attire and used proper courtroom etiquette. The bailiff called me in. I had to stand when the honorable judge was announced. I had to speak into a microphone. There were two other court clerks there on computers taking notes, and it was all being recorded.
The judge was a thin, older woman with longer gray hair and I sensed that she was kind. First, the judge asked me why I felt my son needed a guardian. I explained his history of seizures and that I wanted to protect him if he ever was hurt and had to be hospitalized because he could not make his own decisions. She asked me why a chiropractor filled out his medical paperwork instead of an MD. I explained that he was the only doctor we have seen in a long time and that because of him, my son hadn’t had a seizure in (then) seven months. She was impressed, asked a few questions about the treatment and shared with me that she had a close relative with autism. That was actually strangely comforting. The whole process took about 30 minutes. I had some more paperwork to fill out, and to my amazement, the court clerk actually filed them for me and made copies of the final letters and order of guardianship for me, and even sent the court ordered copies to the relatives on my behalf. She said they usually don’t do that for people. I don’t know if she felt sorry for me, or sympathized, or what, but I was grateful. I left the courtroom as the legal guardian of my own son. I had the authority and status as “the ward’s” personal representative.
How messed up is that? Just because he turned 18, everything changed.
I learned during the hearing that my son’s rights were being taken away when I became his guardian. These included determining residence, consent to medical treatment, end of life decisions, entering into contracts, possessing a driver’s license, buying or selling property, getting married, voting and firearm possession. Actually, under federal law, if you are under guardianship you cannot own, use, or possess a firearm. Not that it mattered to us, but that’s the law.
When I got home and read the actual “Order Appointing Full Guardian Over the Person” document from the court, I seriously wanted to cry. Okay, I did. It said that the court determined that “There is clear and convincing evidence that (my son) is incompetent.” Sniff. Incompetent. Let that sink in.
“There is clear and convincing evidence that (my son) is a person with a mental defect who is prohibited from possessing a firearm pursuant to statute . . . .” Sniff. A mental defect. Damn.
“(My son) does not have the requisite understanding to vote or otherwise participate in the election process and shall be removed from the voting records.” Ouch. Worse than an IEP meeting.
I also had to take a three-hour mandatory Family Guardianship Training class after being granted guardianship and submit the paperwork to the court (and take off from work to do it because they set up the date and time). Most of the information did not pertain to me as I was just the guardian of a person, and not of the estate. My son had no estate. The judge said that if he has over $10,000, I need to inform the court and they will make me guardian of his estate. So, when the government finally compensates families of vaccine-injured kids, I’ll be going back to court. Dare to dream. Many of the people in attendance of the class were there for an elderly parent who could no longer make their own decisions. I seriously wondered what the hell I was doing there. I did learn some things however. I learned that I had to inform people of the guardianship, including his school, medical providers, social security, Medicaid, and financial institutions. Guardianship is also reviewed annually by the court, so I have to fill out more paperwork every year. Hooray! Failure to file the annual reports can lead to revocation of the letters of guardianship.
The main reason I’m sharing this information is because the reason I am even in this situation to begin with all stems from my blissful ignorance in following doctor’s orders 18 years ago. I blindly vaccinated and medicated my healthy child who later regressed into autism and hasn’t fully recovered yet. In today’s information age, ignorance is a choice. You can read my story and others in the upcoming updated version of TEAM TMR’s Evolution of a Revolution: From Hope to Healing, from Skyhorse Publishing in January. Proceeds benefit the grant program to help families affected by autism.
Guardianship laws are state, not federal, and there are different resources within each state. However, there is a National Guardianship Association which has resources on the subject at www.guardianship.org. I truly hope you don’t need to go through what I did, but if you do, I hope this shines a light to guide your path.
For more by Oracle, click here.
did you expect to just be handed full control over your kids life
after they became an adult*
I hate this Guardianship process!! I have taken care of my child by myself for 19 years.Now I am having to do this to not only protect her but protect myself.My daughter has major meltdowns and she hits me,throws things at me and has even caused two knots the size of a goose egg on my head.She has broken bedroom windows,tore down walls and put holes in walls.To make a long story short I didn’t get guardianship when she turned 18 quite honestly I was taking care of my elderly mother that had cancer she has since passed October 2018.I didn’t even know I had to do it until late last year and I was overwhelmed and grieving and it totally slipped my mind.Well now my daughter can beat me,throw things at me and destroy things in the house and nothing can be done if she refuses to go to the hospital for treatment.The cops can’t do anything which I would never press charges but they can’t even take her to the hospital for a mental evaluation if she refuses.As much as I hate this guardianship bullcrap I urge ALL parents to protect yourself and your child and do it.It’s a pain but trust me getting the crap beat out of you and you having no rights is alot worse.
I remember thinking that I had all the time in the world to figure something out. My son, has severe autism, I finally got the process started to get guardianship for him. It’s expensive and complicated. I knew it would be. But I’m doing it. It’s harder on me emotionally than anything. I wasn’t expecting it to hit me so hard. I feel grateful for all of my resources. I know a lot of people have it way worse. My hopes and prayers are for all of the sweet kids/adults that they have relief from suffering. Xoxo
my autistic daughter has turned 18. we live in Ghana, africa. convinced she had spiritual problem, i took her from US to africa for “healing”. All my money finished and we got kicked out by my family whom the fetish priests convinced that my daughter was actually an evil spirit who came to suffer me to death, including anyone who tried to help us. At her father’s family house, we were treated horribly and thrown out, too. I couldn’t get anyone to babysit her for more than a day. We lived and still live in isolation and squalid condition. I had to lock her in the room whenever I go out to make a living to avoid her being violated by people around. She also had the swelling disease due to faulty kidney. Everyone disowned us and now we are homeless.
One time I managed to take her to the US consulate looking for help (when she was still a minor). But I was advised that the only way she could get help back to US was as a ward of the state…without me. I struggled with that, and couldn’t do it. She didn’t attend school because every time I enrolled her in school ( years back), her nephrotic syndrome would come up and we had to deal with these bouts that would last anywhere from 4 to 6 months stretch. When I finally learnt of an autistic school here, the school fees was $100 then, which was an impossible feat for me, and still is.
I want her to go to skills school where she could learn life skills that would help her navigate life as best as she could. If I could the help to enroll her in a day school, that would benefit her immensely. She still speak only few word but would pick up fast with speech therapy. She’s so attached to me that she always wants me around her. But we are in a dire situation and if I don’t swallow my fear and shame, our physical safety, and survival will be dangerously compromised. We just live day by day.
I need help for my adult son who is 31 yeears of age. He will not cooperate with me regarding his PDD.
He still lives with me, he has had
seizures. He had an IEP and I took him to occupational therapy when he was young. Now I have no control over him. He has the worst peers who use him for money. He can obtain a job, but can not keep one. He is disrespectful, and I fear he will become worse. I am disabled I have M.S. I NEED HELP. MY SON WILL NOT HELP PAY THE RENT I AM BEING FORCED TO MOVE. I NEED EMOTIONAL HELP, AND A PLACE WE BOTH CAN LIVE BASED ON INCOME. I LIVE IN OHIO. PLEASE HELP ME WITH SUGGESTIONS. I AM NOT IN A WHEELCHAIR, JUST PAIN, AND STRESS. EMOTIONAL HELP.
I’ve filed a petition for a limited guardianship of my autistic son down at the halls of justice.
It’s been hell.
I”ve been really worried about this. My autistic daughter turns 18 in May 2018. She never sees a doctor, does not have seizures. How important would it be in my case to ask for guardianship? There is very little her (Missouri) for adult autists. A woman at Public Health last week said she advises autism families to move to another state. Here they’ll give them a state-sponsored apartment with a roommate, no supervision, they’re on their own. They have to pay three-quarters of their SS Disability for rent. They get food stamps. Voc Rehab gives them a job coach to try to find a job for them. They get Medicaid. A transportation allowance to call a cab. But they’re expected to live independently, get to work, figure out how to eat lunch, get home, get to the store, make a grocery list, buy, transport, store and prepare groceries, clean the apartment, pay taxes. None of that is going to happen.
I am numb. I don’t know what to do. I also told my daughter that one day we’d get a big court judgment which would allow us to live comfortably even without working (I have vaccine-induced MS and translate at home). She asked When? I said I don’t know, but it will happen. With current numbers of autists in the US, one in forty, virtually all of it caused by vaccines (it was for us), how can it not happen? Are parents going to march off the cliff into the sea forever? No, they’re not.
Cia, it truly is terrifying. At least you’re on top of what’s going on in your state before your daughter turns 18. Do they think parents are going to live forever to take care of their vaccine injured kids? We are in big trouble if this is the best they can do.
Cia, it can be very important. Even if your daughter does not normally need to see a doctor now, there could come a time when that might change. For instance, if you needed to take her into the emergency room (hopefully it will not happen!), they could refuse to let you make any of the decisions. The same applies for dental visits. Medical insurance companies will want to talk to her and not you if there is a billing dispute or if you need them to answer a question.
Also, if your daughter has an IEP, once she turns 18 her school can legally bar you from any IEP meetings if they so choose.
Guardianship would also mean that you would continue to handle anything to do with money for her. Otherwise, you might not be able to do so after she turns 18.
Becoming your daughter’s legal guardian helps you legally be able to continue protecting her.
I hope this has been helpful.
I am sorry that you had to go through this, but be happy that they handled your son’s case this well. Many do not get the same positive treatment. If the court does not believe that your son is being taken care of to ‘the court’s’ opinion and not giving him vaccinations and/or using ‘alternative’ treatments may well be considered abusive/inappropriate, the court may assign an attorney to be your child’s legal guardian and your real nightmare may ensue.
I am very grateful Dawn, and I have heard horror stories of that very thing happening. The fighting for our kids rights never ends.
I read your post with great empathy. My son is 21 and I am still hoping for him to mature into being capable of surviving on his own someday. Some days I see hope ahead of us – other days not so much.
Thank you Jacqui! Much love to you and your son!
As soon as I saw the title of your blog in my e-mail I had to read it right away. I have been bitching to high heaven for YEARS about “Guadrianshit”!
My son turned 31 last week. I dragged out getting guardianship until he turned 20 because I had heard some horror stories (Like the parents of a woman in her 50s who had a significant developmental Disability and ended up on daily dialysis for kidney failure. The process was causing her severe stress and constant behavioral outbursts even as her health steadily declined towards the inevitable. After much agonizing discussion the parents decided to take their daughter off dialysis and let her go so as not to prolong her suffering. but oh no… they were her guardians and the court stepped in to say no. She suffered for close to a year before not even the dialysis could keep her alive. Other parents haven’t been allowed to use experimental treatments for cancer… so many rights lost)
So, after much nagging by my son’s doctor I finally filed for guardianship. The process here in Massachusetts requires evaluations by a MD, a psychologist and a MSW all completing paperwork attesting that the person has a “mental defect” and can’t make their own decisions.
Although we don’t need to attend a 3 hour training we DO have to fill out a 4 page form once yearly and submit it to the court stating how we are caring for our son. GRRRRR
In Massachusetts we also have something called a Rogers Monitor which I also had to get at the same time as Guardianship. If a person is on certain types of psychiatric medications they also have to petition the court to be a Rogers Monitor. This indignity requires that my son’s psychiatrist fill out a 4 page form yearly and I get to fill out all of the other 15 pages of court papers (can’t afford a lawyer here either) to petition the court YEARLY and request that my son be allowed to stay on his medication. The first time my son got his own state court appointed lawyer who meets with me and my son yearly as it is his job to determine that I am making good decisions and to tell the court that yes he should stay on his medication or no he shouldn’t.
I LOATHE… NO I HATE THIS PROCESS!!!!!
Last year the lawyer who is nice enough said that since my son had been on this medication for so long that this year he would have a forensic psychiatrist go over all of Andrew’s psychiatric medical records. I was a nervous wreck, even though his psychiatrist is the head of medicine a a large children’s hospital and his HIGHLY regarded in his field (we LOVE him) but gratefully the lawyer forgot when this year rolled around.
If I lived in Rhode Island, 1/2 mile from where we do now I would have to do this. There is no Rogers monitor in RI (although their adult services suck.)
I GET IT. I understand that this is in place to protect people who are vulnerable. BUT when a son or daughter has always lived at home, never been placed residential, with their parents, there should be some kind of exemption.
I always have this kind of low level of concern hovering in the background about someone deciding I am not doing things well enough for my son. For example not allowing to get any more vaccines (he was vaccine injured from the MMR in 1987 that started our not so lovely trip to Autism land). I always wonder if his Dr will decide to report me that I am not taking good enough care of my son.
The whole process sucks… Thanks for writing this blog and sharing your experience. Parents need to get informed about their rights to protect their child and make the best decision for them. If I had to do it over again I wouldn’t have gotten guardianship.
Thank you so much for sharing Jan! Glad you resonated with the title! XO
Thank you very much for sharing your experience and emotional roller coaster. The portent of going to court and asking for legal guardianship makes me sad but at least I know more now and will prepare myself in a few years. Don’t be hard on yourself. We also believed in what the system was telling us, until he fell apart after the 15 months’ check-up.
Thank you for your kind words!
I entirely understand how difficult the language is to hear. As an alternative health provider to many with autism, however, I also understand the necessity. I understand how many marriages end in divorce after a child becomes autistic -and not all exes are thrilled with their spouses spending money for alternative therapies, often go into denial (and into court) about the improvements made, and sometimes merely for spite or financial gain.
Thank you for sharing this – I will be sharing it with my clientele, as some have said they did not see the need – and when their child turned 18, we had to step away, for the child’s long-term legal security, and because it is the law. This really is important, so your article is much appreciated – and your candor. My prayers for you and your son.
Thanks for your comment.
I am interested in finding out more about your alternative therapy for autism.
Do you have a website I could look at or any information you could email me about your approach?
Thanks in anticipation.
Thank you so much Cindy! We have done homeopathy for years. I appreciate you sharing my blog! XO 😘
Thanks for sHaring your ordeal. Best of luck to you, and your son – and God’S peace!
Thank you Ricky!
Thank you, I often wonder what our future looks like and he is only 6 but being ignorant to it never helps anyone so thank you for the brief glimpse into what we may have to do, for his sake, one day.
You’re very welcome Erin!
You’ve been through a lot with your son and I applaud you. How sad is it that, we as parents, are not really protected – all the way from taking that first vaccine – to our child becoming an adult. I encourage all parents out there to research, research, research before you let anyone (including doctors) talk you into anything for your child. What a crazy world this has become!
Amen Elaine, and thank you!