I can’t remember how I learned that I would need legal guardianship of Braxton once he turned 18. I probably learned it at work.
It certainly wasn’t mentioned in anything I read about transitioning an autistic child to adulthood.
At work, I have patients all the time that aren’t competent to make their own decisions due to severe mental illness or dementia.
Most families of these patients did not have legal guardianship of them at the time.
It made treating them nearly impossible in any sort of long-term way. We all knew once those patients discharged, readmission within the month, if not in days, was likely.
That’s a story for, uh, not this blog, but it made obtaining guardianship of my son a priority for me.
I personally witnessed the hardships these families faced trying to obtain services without the legal authority to do so, and I definitely didn’t want to experience the same.
When you’re a parent of a severely developmentally disabled child, you kind of just assume you’ll always be their decision-maker. Right? You’ve been making the decisions this whole time.
Ha! Not so, folks. Not so.
Why Guardianship Matters
You’ve been making the decisions for your autistic child up to this point because your child was a minor. Autism (or any other special need) had nothing to do with it.
Many autistic children will grow up and be able to independently make choices for themselves, or with minimal assistance.
But not all of them. If you think your child will need you to continue making decisions for them, you’ll have to petition the courts for legal guardianship.
Without legal guardianship, you’ll lose all ability to take them to doctor appointments, therapies, or any other services they receive that require consent.
More than that, you won’t even be allowed involvement. If your child were to, say, need to be taken to the emergency room from their day program, you wouldn’t be told about it.
And if you tried to call or show up at the ER to find out what happened to your child, you’d get, ‘We are unable to confirm or deny the presence of a person by that name.’
Privacy laws. Nice, huh?
Braxton and I have been very lucky in that he’s not medically fragile, and didn’t require any skilled nursing care.
More than that, he, like myself and most of the people in my family, never so much as catches cold. Our immune systems are scary good, so going to the doctor was a seldom-occurring event.
But like many autistic children, Braxton receives a plethora of therapies and services that need ongoing monitoring by a physician…
…which requires treatment consent…which Braxton isn’t capable of giving currently and will likely never be.
To prevent any interruption in his services, obtaining guardianship as soon as he reached adulthood was very important.
Where Do I Sign Up?
So, with the help of my good friend Google (more an acquaintance or business associate, really), I discovered that I could file for guardianship entirely on my own, or with the assistance of an advocacy group.
Or I could pay a lot of money to an attorney to do it for me. I know this isn’t an option for many families, but I chose to find an attorney.
Imagining somehow messing this up made me very anxious and a legal professional on my side made me feel much better.
Google told me that the kind of attorney I needed would specialize in family law, so with a quick search, I found a local family law office and set up a consultation.
The Role of the Attorney
Braxton was 17 at this point, and it was almost six months until he turned 18. I thought this was a good head start on things so that I could at least learn what to expect when the time came.
The attorney agreed to take our case. The plan was preparing the necessary documents a week or two before Braxton turned 18 and then filing them with the courts on his 18th birthday.
You can’t file any sooner than that- your child has to be a legal adult first (at least in Colorado).
This would grant me Emergency Guardianship, allowing me to continue to make Braxton’s medical decisions while waiting for permanent guardianship.
Then the attorney would contact me with our first of two court hearing dates, and we would proceed from there.
Totaling the consultation fee and the retainer, this whole process cost me $2100. Despite the cost, I walked out of those offices that day feeling beyond relieved.
All I had to do was wait, and I could cross this off my to-do list. Yay!
Or so I thought.
Petitioning for Guardianship
Unbeknownst to me, my oh-so lucky self just happened to choose an attorney with A LOT of home life/health problems.
I don’t mean to sound unsympathetic- the home and health problems weren’t the issue. The issue was…well, keep reading.
By my son’s 18th birthday, the attorney had not contacted me. I’m an anxious sort but not impatient, so I waited.
I thought maybe she would call me the morning after his birthday to tell me she had filed the documents and what the next step was.
That morning came, and no word. A week after his birthday, still no contact. I finally call the office…and find the lawyer had done absolutely nothing for my son’s case.
Braxton had an appointment with his physician the next week, and he would have to miss it because I couldn’t consent for him.
At this point, I skipped right past anxiety to anger (although I’m sure anxiety was still in there somewhere). I went out of my way, well ahead of time, to try to prevent this exact thing.
In fact, I paid over $2000 to prevent this.
An Appropriate Reaction to Unprofessional Conduct
I don’t believe in Karen-ing, but I also don’t believe in keeping my mouth shut in situations I find unacceptable. This was one of those times.
I didn’t yell or raise my voice. I didn’t curse at her, or intentionally insult her. After I reminded her of our consultation and the plan, she told me of her home and health issues. And my response was,
“It’s very unfortunate that you had to go through that, and I hope that gets better for you soon.
But it doesn’t change the fact that you failed to hold up your end of our arrangement, and you didn’t even tell me that you weren’t able to handle our case on time.”
I’m making a point of telling you about this part because with being an autism parent comes this feeling of powerlessness.
Your child needs help, and you don’t know how to help them yourself, so you rely on “professionals.”
You’re scared, and jump through whatever hoops they put in front of you for their help. You don’t question their judgement, advice, or methods.
Neither do you question the expectation of constant availability for whatever paperwork they left until the last minute…that you must now complete immediately so services aren’t interrupted.
You don’t have to do that. Truly. You’re allowed to have boundaries. And you definitely don’t have to accept someone’s lack of professionalism, whether you paid them a bunch of money or not.
Anyway, I digress. We can talk more about that in another post, perhaps.
The remainder of the conversation with the attorney revolved around apologies and assurances. She filed the forms by the following week and the court granted me Emergency Guardianship 15 days after Braxton turned 18.
Emergency Guardianship to Permanent Guardianship
The Emergency Guardianship order was only good for 60 days. It allowed me to continue making medical decisions for Braxton while waiting for our court date and the rest of the guardianship process.
At the initial court hearing, the judge reviewed records about Braxton’s diagnosis and current level of functioning.
The judge asked about my future goals for him, and my opinion on Braxton’s ability to participate in his own care, amongst other questions I can’t quite remember anymore.
A Court Visitor (an investigator, sort of) evaluated our home and living conditions. Then we waited for her to give her report to the judge.
We came before the judge a final time, and she granted permanent guardianship.
Now we can Yay!
Guardianship Report
Okay, not -Yay!- yet. I had to complete an initial Guardianship Report, which tells the courts Braxton’s current financial, residential, medical, and functional status.
It’s pretty lengthy. And must be completed and filed every year for the remainder of Braxton’s life or until I’m no longer his guardian.
For this first one, I had the attorney review the report for errors. She filed it, the courts accepted it and that was it.
She withdrew from our case (fancy talk for saying “Done”), and I’ve completed and filed the Guardianship Reports myself since then.
Okay, for real this time, Yay!
How to Guardian! (a.k.a. Conclusion)
I wish I could say that the other elements of Braxton’s transition to adulthood went more smoothly than this did, but it’d be a lie.
Lying’s bad for your health, you know. I’m a nurse so I can confirm this.
A couple of things went without hitch, and everything else just won’t. Stop. Hitching.
To all of you reading this, thank you and I hope it helps you as much as putting it in writing helps me.
If you want more details, please read my “Guide-“ post that gives a more specific description of the guardianship process.
Feel free to leave a comment or contact me with questions/additional comments.
Peace out, ladies and gents, until next time.
