Moving on with the guardianship … remember that the day she turns 18, without my having legal guardianship, no one can tell me anything about Pearlsky medically, at school, etc. No exceptions, that’s the law. Uggh.
Today I received from the court the “Citation Giving Notice Of Petition For Appointment of Guardian For Incapacitated Person.” Sounds scary. Can you guess what I need to do with it?
It was a long week, some good, some bad. I guess that means status quo.
There is so much to say on this topic, but I won’t say it all now.
I fought, with websites and a blog, visits to the State House, conversations with the U.S. Congress, to get Pearlsky out of the No Child Left Behind (NCLB) testing (and we won). Why? Even the “special needs” version REQUIRED asking Pearlsky multiple questions, over a period of 45 days, and more. But that’s another post.
Some days are better than others, and then today happens …
I’ve mentioned the pharmacist goddess, Roxanne, in past posts. She is one of the very few who read my blog, know me, and live near us. Turns out that this morning, as I was going to the supermarket, I was thinking to myself how there was no way I could write the post I want to. I often get the feeling that no one would believe me, or that I sound like a dork, a whiner, or something. Could all this stuff really be true? Really happen to one guy and his kid?
As I pulled into the supermarket, who do I see? The pharma-goddess and her hubby, Mr. Pharma-goddess. I park and get a hug! A hug from a wonderful woman with drugs! Go beat that.
She tells me she reads this blog often and can’t believe that I still function … she is having a very difficult time just finding and scheduling movers! (yes, I am losing my drug connection …) We laugh over all the stuff that happens around me and Pearlsky, and she compliments me on surviving with a smile.
Ain't no Schleprock here!
I know that sometimes I may cause or aggravate a situation, but that is by far not the norm. I know that I react strongly to somethings others would let go past. I have a very strong sense that what is done for / to / with Pearlsky must meet the level of that for any “normal” person, and that, at least with the school district, she is a pioneer and I want it to be right for those following us. Maybe there is some totally misplaced guilt and I want only the best for her. Whatever it is, a lot is just thrust upon (dumped on) us, and we deal.
Ninety percent of the time I like life. I have great friends, relatives, one and a half successful companies, respect of others, food on the table (Pediasure, hot dogs and coffee count, right?), and my health.
So, I will do this post, it is all true. Just a typical week in the life of Single Dad. Some good, some bad, some ugly.
When Pearlsky was about two months old we picked up and moved to a college town where her mom was teaching for a trimester. That left me as full time dad. Since Pearlsky was already messed up, we had an early intervention team. I wish I knew the woman’s name, but this one lady came by and did some minor therapy stuff twice a week. The thing we remember most is the bell.
So much to blog about … the ending to the sagas from the last post, the new-to-the-iep-and-getting-f’ed-over saga of one of my bff’s, the screw-you-I-don’t-want-to-come-thirty-minutes-early-for-the-appointment post, etc. But, I don’t have the energy right now.
No, we need to get ready for tomorrow. We Pearlsky has an appointment in the morning. A three and a half hour appointment. With a shrink. Yes, a psychiatrist. Three and a half hours. Pearlsky who cannot write, point, nod, purposely look, scratch, etc., yes, the Pearlsky with NO communication. Three and a half hours. With a shrink. We are going to bathe, ’cause if you look marvelous, nothing else matters. I just know she’s gonna blame everything on me. Don’t kids always blame the parent?
For legal guardianship we need a full report from a social worker, psychiatrist, and a physician. From each, a multi-page report saying “Pearlsky is retarded fully dependent.” Three and a half hours. Damn, I better behave.
By the way, who reports the mandated reporters? (a future post)
Let’s hope the doc doesn’t check her belly …
Scary scene from scary movie, the original Exorcist. Click on image at your own risk!
So, a bit more on the guardianship panic issue. I sent the following email to four children’s hospitals (L.A., Chicago, NY, and Boston) and two major adult teaching hospitals. It was sent to whatever principals I could find, typically the COO.
I am having a very difficult time getting the proper answer to a question that is quickly becoming very important. Hopefully you will be able to pass this on to the appropriate person, I appreciate your time and consideration. I wish it was a hypothetical question.
If a severely disabled eighteen year old woman (emancipated, non-verbal, non-mobile, etc.) came in to your hospital, either via the ER or in a clinic, and the woman did NOT have a guardian nor (obviously) a health care proxy, would anyone be consulted in her needed care? Could a family member legally be kept fully informed, or make decisions, if it was not emergency or life saving situation? And if it was an emergency? Again, no court appointed guardian.
Thank you for any and all information.
After a week and a half, that included a follow-up “is anyone there?” two of the hospitals responded, Boston and Los Angeles Children’s Hospitals. I know that Chicago and NY read the email, but they ignored it.
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.
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