In this post, I’ll go into more depth about obtaining legal guardianship of your autistic child once they reach adulthood.
I’ll talk about the importance of guardianship and how you might determine whether your child will need guardianship.
I’ll also talk about alternatives to guardianship, different methods of seeking guardianship, and some resources you might find helpful.
This is meant for information purposes only- I am not a lawyer, or any kind of expert about guardianship laws.
I’m just someone who’s become proficient at finding resources because I’ve had to do it on my own many times.
I’ll provide as many helpful links as I can under the Resources tab and will answer any questions about finding resources as I’m able.
But for any specific questions you might have about guardianship processes or laws, I strongly suggest you seek professional legal advice.
1. Why Legal Guardianship Matters
I talked about this a little bit in Our Story, but I want to expand on it now for those of you who are looking for more guidance.
To that end, here are 5 reasons you might need legal guardianship of your autistic child once they reach adulthood. Because your child:
- Receives ongoing medical treatment or therapy that they can’t consent to because they don’t fully understand their own condition or the treatment.
- Receives some form of education or service that they can’t consent to for the same reason as above.
- Can’t make decisions regarding their own finances because they don’t understand how to manage money or expenses.
- Can’t make decisions regarding their living arrangements because they don’t understand the processes necessary to secure housing.
- Can’t maintain their own safety independently, and can’t seek supports because they don’t understand the need for them or how to perform the necessary steps to obtain them.
Medical treatment, finances, education, and living arrangements are the focus areas in which guardians act. To learn more about that, see section 3 of this post.
If your child can’t participate in decision-making regarding any of those things, and you don’t gain legal guardianship of your child, their treatment essentially stops when they turn 18.
Or worse, it continues and because of privacy laws, not only will you have no part in it, you won’t even be told about it.
When it comes to decision-making, keep in mind that the key word here is “can’t,” which might mean a whole range of things.
If your child is anything like my son, it might even mean their decision-making ability isn’t equal across all focus areas or in every aspect of each area.
Maybe they can participate in some and not others. A bit common to autism, right? Or maybe they only need a little support to participate in decision making.
Legal guardianship is the most restrictive means of addressing these matters. It takes away all your child’s rights to make their own decisions once they’ve reached adulthood.
If your child can participate in decision-making in even a limited way, consider something less restrictive. Help them gain and maintain whatever independence they’re able.
2. Will I Need to File for Legal Guardianship?
As I mentioned above, legal guardianship is the most restrictive method of helping your child as an adult.
Many autistic adults don’t need a guardian, even if they do need some help making decisions for themselves.
There are alternatives to guardianship that don’t limit their right to make their own choices quite as much, such as Power of Attorney.
Another alternative I’m not personally familiar with is supported decision making.
I’ll describe the difference between a legal guardian and a Power of Attorney in Section 3 of this post and I’ll include links to information about supported decision making in the Resources tab.
How Do You Know if Your Child Needs a Guardian as an Adult?
For me, that was easy. My son is severely autistic and demonstrates gross deficits in all of the decision-making focus areas.
For those of you with children on the higher end of the spectrum, that might be a more difficult call.
They’ll have to have an evaluation to determine their capacity (also sometimes called competency) level.
This is usually done by a psychiatrist or psychologist, but can also be done by your child’s education/treatment team.
The information from the evaluation can be used to decide whether your child needs a guardian.
Loosely speaking, your child is likely to need a guardian if:
- Like my son, Braxton, your child is not capable of participating in decision making at all due to their low level of functioning.
- Your child is able to participate in some basic decision-making, but has very limited ability in key areas, i.e. medical treatment, finances, etc.
However, legal guardianship is not meant for those who simply disagree with the choices their children make.
As long as your child demonstrates understanding of the risk/benefit of their decisions, they can make any decisions they wish as adults.
I won’t get much more specific on the processes of capacity evaluations because they can vary by state. I’m only personally familiar with the process in Colorado.
For those who live in other states, I’ll give some tips on how to find information for your state later in this post.
3. Alternatives to Legal Guardianship: The Difference Between Guardianship and Power of Attorney (POA)
This can be a little confusing and honestly, most of my knowledge doesn’t come from life with my son. It comes from my profession.
In addition, I don’t know exactly how much this can vary by state. I’ve noticed that how we use “medical proxy” in Colorado differs from what that means in other states.
From what I can tell, there aren’t significant differences in the other alternatives across states but I’m not a lawyer, so…
A. Legal Guardianship
Right, so guardians have the most power to make decisions for a ward and are appointed by the courts. Anyone can petition to be a guardian.
So we’re clear: this is not a paid position. You do not receive money to be a guardian.
It is the duty of the guardian to make decisions in the ward’s best interests. This includes housing, medical care, education/vocational training, finances and general well-being.
Hand in hand with that duty is the responsibility to report the ward’s condition to the courts every year.
The decisions made by the guardian trump any other form of decision maker.
For example, if a person has both a guardian and a POA, the guardian’s decisions out-rank the POA’s in the event they disagree.
They also out-rank the decisions of the ward, should the ward disagree with what the guardian wants for them.
It’s very similar to being a parent to a minor child- maybe your child hates school and doesn’t want to go, but it doesn’t matter because they’re not the boss of you and damned if you’re gonna get ticketed for truancy.
You make them go, because it’s in your child’s best interest to go to school (and you don’t want to go to jail), whether your child agrees or not. Your child isn’t mature enough to know better. You follow?
All humor aside, a good guardian will do what they can to include the ward in the decision-making when feasible.
As an example, my son doesn’t have a choice about going to speech therapy because he needs it. His communication skills are extremely limited.
However, he has made it clear that he does not want to communicate through any alternative to verbal speech and writing.
I honor that choice by not forcing him to use sign, or PECS, or any electronic talking device. As a result, he’s more willing to participate in therapy and his verbal skills continue to improve.
If Braxton were a regular 20 year old, he would get to choose which college he’d attend and which classes he’d take. This is the closest approximation that I can give him.
B. Power of Attorney
A Power of Attorney (POA) is appointed by the ward (not sure this word applies here, but whatever), not the courts. I don’t think you can petition to be a POA.
Instead, a person will ask you to act as POA, and you sign a legal document if you agree to do so.
A POA is only able to make limited decisions for the ward:
- if the ward is unable to do so
- and the ward doesn’t have a guardian.
There is more than one kind of POA, including durable and non-durable. In your situation with your autistic child, I’m talking about the durable POA.
A durable POA is often chosen well in advance by the ward and can usually make many of the same decisions that a guardian can.
The confusing thing for wards and families alike is that a durable POA is only allowed to make decisions when the patient (ward, whatever!) is incapacitated.
In other words, they can’t make the decision themselves. Those situations only occur under certain circumstances, such as very progressed dementia, unconsciousness, brain damage, etc.
If the patient isn’t incapacitated in some way, they make their own decisions, even if the POA feels like those decisions aren’t in the patient’s best interest.
A POA is more like being a parent to a college kid- you took out all those student loans so your son could go to college since he couldn’t take out loans himself. Maybe he decides to drop out of college to come back home and create a start-up company out of your basement.
It doesn’t matter that you think it’s the worst idea ever, or even that you gotta pay back all those student loans with nothing to show for it. You can’t force him to go to school…but since he can’t secure his own living arrangements (it’s your house), you can decide he has to get a job to pay rent.
And if all else fails (or the loans were for a very large amount of money), you could maybe sell his liver on the black market to cover his expenses.
Assuming it’s in good condition- not a guarantee with college kids these days. Maybe a kidney?
I don’t know, not my area of expertise. Black market organs might not even be a thing. Just trying to make a point here.
Okay, moving on!
C. In My Professional Experience:
At work, I seldom see guardianships. Most of my patients were fully capable of making decisions at one time or another.
No one knew or felt the need to seek legal guardianship while they were. Even though for some of them, someone probably should have.
If I did have a patient with a guardian, 9 times out of 10, they had a developmental or intellectual disability in addition to mental illness.
I suspect the families of those patients had probably been prepared to seek guardianship due to the DD/ID while the patient was a child.
It was likely already in place or nearly so when they began showing signs of mental illness. Many mental illnesses don’t present until late teens or early adulthood.
Many of my patients did, however, have POAs. Most of the time, it was my patients with dementia.
Back when they were first diagnosed with dementia and hadn’t completely lost their faculties, they appointed someone (usually a son or daughter) as POA for when they inevitably would.
4. Methods of Filing for Legal Guardianship
As I mentioned in Our Story, there seems to be three general ways someone can petition for legal guardianship.
I say “general” because the exact processes vary by state, like so many other legal things in this country.
A. Filing on Your Own
In the state of Colorado (where I live), you can go on the government website and find all the forms you need to file, and instructions about how to file them.
It also has information about the other documents you’ll need for your case, and a pretty good description of the whole process so you have an idea of what to expect.
Of course, this won’t help you if you don’t live in Colorado, but with a quick Google search, I found that other states have these features on their government websites, too.
If you just go straight to your state website, you might have a harder time finding the section containing guardianship resources- state websites are massive in my opinion.
Tips for Finding the Necessary Forms to File
I think the best way is to search for “legal guardianship of adult in yourstate” with the search engine of your choice (I prefer Google).
Then of those results, choose the one from your state website (usually looks like yourstate.gov, or stateabbreviation.gov).
I can’t vouch for every single state website but I chose a few at random, and they each had a self-help section for guardianship.
If this is how you want to file, this is my top suggestion.
Otherwise, I know of at least one law office website that can direct you to the necessary forms for your state.
I thought it was more difficult to know exactly which forms I needed through this site, but it made finding the forms for each state much easier.
There might be other law office websites that have self-help, too, without you having to actually consult an attorney.
Some Pros and Cons of Filing Yourself
People usually choose this method because of the low cost. Printing the forms from the government website is free; printing the forms from the law office site I found charges a fee.
The fee seemed like a lot to me for some papers I would print myself, but it’s still much cheaper than getting an attorney.
I think there might be a small fee to do the actual filing of the forms, but I’m not sure because I didn’t do things this way.
Check with your state about any costs of filing- again, I suggest your state’s government website.
To do things this way, you gotta be fairly comfortable with navigating the court system and the language used in legal documents and proceedings.
Most of us aren’t that comfortable. Or are outright intimidated. If you have the bravery for this method, I applaud you.
B. Filing Yourself but With Help from an Advocacy
This option is just the same as option A (above), but you’ve asked an advocacy group, like The Arc, for help.
Now, I only know The Arc can help with this in Colorado because I heard about it through the grapevine.
I can’t confirm it because this isn’t how I did it, and The Arc’s home website didn’t mention it.
Instead, the website said to find a local chapter and ask the chapter directly if they can help.
I suggest you try that because even if they can’t help you, chances are, they’ll know someone who can.
In fact, I’ve navigated my son’s entire life in this manner- more on that in future posts, my friends! This one is long enough as it is.
You might try Autism Speaks, also, if you’re so inclined. I know very little about them because I’ve never used them as a resource- differences of opinion and all that.
I know others who found them incredibly helpful, though, and again, if they can’t help you, they likely know who can.
C. Having an Attorney File for You
This was the route I chose to take because, more than cost, I was worried about delays. Time truly is my most important asset and, in that respect, I’m near bankruptcy.
I have an extremely demanding full-time job that often requires overtime, and then I go home to a son that is also a full-time job.
I do not have time to mess around and re-do things if they don’t go right the first time.
So, attorney. The kind of attorney you need specializes in Family Law, although I’ve also seen mentions of a Guardianship Attorney. I have no idea if there’s a difference between the two.
The Consultation
The thing about attorneys is they’re expensive. And you’ll have no idea how expensive they are until you’ve already given them some money.
For those of you who’ve never consulted an attorney before, I’ll explain.
Like most people price shopping a service, you’ll start by looking online to find out how much getting a lawyer will cost you. And you won’t get an exact answer.
So then you probably start calling local law offices to see if one of them can help you and how much it’ll cost. Standard op, yeah?
They won’t really answer those questions, though. They might say something like, “We handle legal guardianship cases all the time,” just so you know you’ve called the right place, but that’s it.
Well, and they’ll tell you the cost of a consultation.
You only get answers to those questions if you set up a consultation with the attorney. Those are seldom free (at least in this type of case), and you have to pay up front. Mine was $100.
Some Things to Expect During the Consultation
The consultation is usually in person, although the pandemic changed some things and I think some are done through televideo now.
At that time, you tell the lawyer exactly what you are trying to accomplish. In our case, that’s legal guardianship of an adult with special needs.
This is what you’re seeking even if your child isn’t an adult yet.
By law, you can’t seek guardianship of an adult until they actually are an adult. However, if (like me) you want to get the ball rolling in advance, you can retain an attorney ahead of time.
During that meeting, the lawyer asks questions about your particular circumstances. Then they decide whether they can or are willing to take your case.
If they accept your case, they’ll then explain to you what steps they’ll need to take to accomplish what you want. At that point, they’ll tell you what the retainer price will be.
If you agree to it, the attorney draws up a Legal Representation Agreement, basically a contract.
It outlines their specific responsibilities in your case, your responsibilities in your case, the fee rates, and what happens in the event of non-payment.
Back to Price Shopping
You can’t find out an attorney’s expected retainer fee until the consultation, unfortunately.
The only way I’ve found to do any price shopping is to pay for consultations with several attorneys, and then choose the best retainer fee.
Yeah…I totally didn’t do that. Seemed like a waste of money to me. But maybe things would’ve gone better for me if I had? Meh, oh well.
If any of you know a better way to price shop an attorney, please leave it in the comments.
The Retainer
A retainer is like a quote from an auto mechanic. You take your car in to the shop, they tell you what the problem is and the expected cost to fix it.
The job you want usually costs X amount of dollars for parts and labor.
But it’s an estimate. Some of the cost is based on expected length of time it takes to do the job. Some is based on the assumption that there aren’t additional problems they haven’t found yet.
Any difference in those variables can change the actual price you end up paying. It could be more or less than the original quote.
Because that can seem a bit shady, most auto shops provide you an itemized invoice so you can see exactly what you were charged for.
Attorneys are supposed to do the same. However, unlike an auto mechanic, you pay the attorney the retainer fee upfront.
From the retainer, the attorney will subtract the fees of petitioning the courts for legal guardianship.
It’s kinda like…you’re a business manager and you need some supplies, so you give your secretary some petty cash to use to buy them.
And pay for her mileage since she used her personal vehicle.
The money you sent with her is all she has to make those purchases. I mean, she’s not going to use her own money. Who would?
So the cost of each item (and the mileage) will come out of the petty cash until
a) all of the items (and mileage!) have been purchased or
b) she runs out of money.
Really hope that analogy made sense. Anyway, the petty cash symbolizes the retainer. The attorney takes the fee for everything they do out of the retainer.
If the money you gave them as retainer didn’t quite cover it all, you have to pay the difference.
Attorneys. Expensive but more time-cost effective. In theory, anyway.
5. Other Guardianship Things
Permanent legal guardianship takes some time to achieve. There are court hearings, Court Visitors, things like that, that must take place before you’re granted permanent guardianship.
In the meantime, you can seek Emergency Guardianship. Its purpose is to allow you to act as decision-maker while completing the process for permanent legal guardianship.
Emergency Guardianship has other purposes, also, but they aren’t relevant to this topic.
In Colorado, an Emergency Guardianship order is only good for 60 days, unless the judge decides on a different time frame. The exact date of expiration will be on the document.
I assume this is similar in other states, but I don’t know how much the process behind it might differ. I’ll leave it to your individual research.
6. Guardianship Report
I also assume there is some variation of this report in each state. A Guardianship Report tells the courts the ward’s current financial, residential, medical, and functional status.
A report must be filed every year that you are your child’s guardian.
Make sure you keep track of their educational/vocational progress, changes in treatment or residence, and where their money goes.
The money part applies in particular to SSI or disability payments they receive, in addition to any wages.
If you’re their Representative Payee, I recommend having a completely separate Payee Account for their money. It makes tracking it much easier.
I’ve found the best way to learn how to open a Payee Account is to call your bank and speak with an accounts representative. They should be able to answer any questions you have.
If you don’t use a bank for your personal finances…well, I guess just find a bank that looks good to you and call them?
Sorry, got nothing for choosing banks. I usually just pick whatever’s closest. Probably not the best criteria for banking but I’m busy, okay? And tired.
Maybe I’ll do a future post about banks and Payee Accounts.
Tips for Completing the Guardianship Report
In Colorado, the Guardianship Report is lengthy and I usually start completing mine at least 3 weeks before it’s due so I’m not forced to sit and complete it all at once.
Reports of any kind are reeeeeeeeally boring. Breaking it up into smaller portions helps me not hate my life.
If you aren’t sure of the correct way to complete this report, your attorney can help you. If you don’t have an attorney…
…or are tired of paying them a million bajillion dollars to look over your paperwork…
…one of the advocacy groups I mentioned earlier in this post can also probably help you.
7. Helpful (-ish?) Resources
In the interests of keeping this post from being so long it takes days to read, I’m not going to include links here.
For additional resources, find them under the Resources tab. Read about our personal experience with legal guardianship here.
Contact me with questions or comments, or you can leave a comment in the box. Thanks again to all of you for reading this, I really hope it helps.
Peace out, ladies and gents, until next time.
