I hate when my rant gets sidelined
I was all set to write about summer camp again. The school is starting to think about what to do with Pearlsky this summer (after an email from me asking what they are going to do with Pearlsky this summer). There were some quasi-infuriating emails already, and I was just about to post about it when the proverbial shit hit the fan.
Mary got back to me. Mary works with the state’s department of mental retardation (DMR) and is Pearlsky’s case worker. I have not spoken to her in years since all is going well (within Mary’s purview). I had left a message … the topic: guardianship.
Pearlsky turns 18 later this year. The moment she turns 18 her world changes, she is legally an adult and I legally am nothing. Well, still her father, but if not appointed by a court as her legal guardian I cannot make medical or financial decisions for her among other things. I am researching the exact parameters and will be posting about that. But here is the kicker …
So, Mary, can the DMR help with guardianship?
Yes, we will do all the work. It has gotten very complex in the last few years and our lawyers will take care of it all. We need to involve a doctor, social worker, psychologist, lawyers and the court. It will all start when she turns 17¾.
And we will go to court and be done before her birthday?
Oh no. You cannot go to court until after she turns 18.
So there is a period of time, maybe just a day or two, where I am not her guardian and everything is at risk?
Yes, but it is more than a day or two. We are averaging six to twelve months, and that is if we don’t have a freeze. We are not allowed to start the process until she turns 17¾.
Understand that there will be six to twelve months where Pearlsky does not have a legal guardian. Don’t laugh and say “But you’re her father” or the like, that is moot in many cases. If she is in the hospital I will have no say in anything. Even worse if some nurse or resident or other person wants to file a bizarre complaint. Yes, if it is our hospital, the doctors know us well, and it should not be too much of an issue. But if it is not our hospital? I don’t believe I can sign an IEP since she will still be in school (until she turns 22).
This is a topic I will be revisiting. There can be devastating results when this population does not have a legal guardian once they are over 18. As I said, I am doing the necessary research, I don’t want to base any worries or actions on the stories I hear, I want facts, and will pass them on.
Parents are the legal guardians for their child until that child reaches his 18th birthday. Once a disabled person has reached 18, most states identify this individual as legally emancipated, an adult capable of acting in his/her self-interest, regardless of any developmental disability. … Without a legal guardian, an individual with developmental disabilities may encounter difficulties obtaining medical treatment and /or accessing social services. … If a disabled individual does not have a guardian they can be liable for any financial and legal obligations he or she incurs regardless of their ability to pay them.
But I will leave you with this story on the issue from a trusted source.
Obviously it’s a concern you have to think about more than most, and the struggle of the judicial system to deal with exceptions shocks me. The tale on Cinda’s blog terrorizes me, because hopefully you and Pearlsky will slide through that period without any disaster, but that story shows us the horror of what can happen when a young person doesn’t.
It makes me think about how everyone needs an advance directive, because really aren’t most people at risk of losing the ability to make decisions for themselves unexpectedly (isn’t that how it usually happens?). If they are not married, are not children, or if their relationships aren’t recognized by the state, we have a mess.
But here we have Pearlsky, who we know in advance, barring a miracle or its opposite, will *keep* needing, not newly need, someone to make decisions for her, and we can’t even deal with her needs logically as a society. I’ll be crossing my fingers that you aren’t thrust into a crisis on her birthday.
Thank you for writing this. I am going to look into what the situation is here in Ontario. I would not want to be caught up in such a nightmare.
“So, Mary, can the DMR help with guardianship?
Yes, we will do all the work.”
She lies. Leaving Pearlskey vulnerable is.not.helping.
And I’m only saying that because this makes me very angry and I am commited to not cursing.
Well, as we say in Wales : “that’s pretty crap”.
Stupid question : is it possible to start the guardianship process now, as opposed to when she is seventeen and three quarters?
I am going to think about this A LOT.
and get back to you with some hopefully intelligent and viable miracle solution.
what a fricking bummer eh?
It’s the same here. Stupidity sucks big time.
I’m confused, legally your guardianship ends at age 18, but she does not automatically become a ward of the state due to “incapacity” (I’m flagging for the correct terms here) – so you are required to go to court to re-instate your guardianship? So what happens if something were to happen to you? (sorry – sounds morbid but also an important subject)
I may be wrong but in the UK I believe legal guardianship automatically goes to the state at age 18 for individuals with severe intellectual disability, although parents still have a huge say in what goes on? It seems ridiculous that in the US every family of a child with severe intellectual disability would have to go through the court when their child reaches 18 to establish guardianship.
This subject is confusing and frightening……….
This is one shining example of why disabled people detest bureaucracy.
I don’t know what to say. I had no idea. I thought I knew everything.
It’s unbelievable and I’m speechless.
You are one feisty (in a good way), prepared dad. So lucky that Pearlsky has you and so glad that I read this. And of course, it makes me frustrated to hear that there’s no end to ridiculous bureaucracy.