“If I don’t think about it, it won’t drive me crazy.” ~Aaliyah [UPDATED!]
RE: Guardianship. I was asked why it is such a big deal to me right now that there will be a period of time, up to a year, that Pearlsky is emancipated and does not have a guardian. I spoke to two lawyers yesterday, did some research, and it gets deeper. Note that I am still researching and finding out more.
In this state, Pearlsky will become emancipated (“a legal mechanism by which a minor is freed from control by their parents or guardians, and the parents or guardians are freed from any and all responsibility toward the child”) automatically at age 18. This happens no matter what her mental or physical state is UNLESS a court determines otherwise. Only a court of law can proclaim someone incapacitated or some other designation. She does not automatically become a ward of the state, she only becomes a ward (of mine, the state’s, etc.) at the determination of a court.
- Pearlsky will be emancipated on her 18th birthday. I cannot become her guardian unless and until a court of law determines she is incapacitated and then grants me guardianship.
- Once she is emancipated, I cannot see her medical records (federal and state law) nor talk to doctors unless I am her guardian. It appears that we cannot do a health care proxy now that would take effect later. Lawyers are checking. [see update below]
- Once she is emancipated, I cannot sign her IEP, nor make therapy decisions, unless I am her guardian.
- Two mandated reporters have questioned the appropriateness of a man, me, caring for his daughter. One started a formal complaint against me that was quickly stopped by doctors, but it was started nonetheless. I will have NO legal standing against those with the prejudice of a father caring for a daughter if I am not her guardian. The legal advice I received yesterday was that yes, the problems would get much larger with such a complaint, potentially resulting in my immediate arrest as well as removing her from a supposed situation. Both problems in the past involved simple personal hygiene.
I get the response, “oh, that won’t happen,” yet it does everyday. When my dad was in the hospital, the nurse who knew I was his son, who knew me right away since dad had told her how thrilled he was I was coming, that nurse would not tell me a single thing due to HIPAA. It made no sense since he was at that point unconscious, but she would not. What about the school nurse who has stated that it is wrong for me to be caring for Pearlsky since I am a man, accused me of neglect because Pearlsky was having an estrogen surge, what will she do when Pearlsky is emancipated? She will not be allowed, by law, to call and ask about meds, to ask about giving Advil or valium, HIPAA stops her from such. Both lawyers I spoke to were very concerned as they know me and know Pearlsky, but alas, they do not specialize in family law. At least not yet.
The state Department of Mental Retardation will do the work for no cost, but it can take up to a year after her emancipation. A private lawyer will cost thousands of dollars with no time guarantee.
Should have just gotten that puppy …
Update: No, I cannot be her health care proxy. Directly from the law:
Every competent adult shall have the right to appoint a health care agent by executing a health care proxy. Said health care proxy shall be in writing signed by such adult or at the direction of such adult in the presence of two other adults who shall subscribe their names as witnesses to such signature. The witnesses shall affirm in writing that the principal appeared to be at least eighteen years of age, of sound mind and under no constraint or undue influence.
This is exactly the sort of thing that makes me sick to my stomach. I don’t even know what to say.
Shit, that’s just ridiculous, I’m out of date on UK law and maybe similar there too. It seems in the US though, as health care is so bizarre anyway (IMO) that Pearlsky’s health can be put at risk at serious risk.
What I think of the people who don’t want you to take care of Pearlsky because you are a man – I can’t write here. I really hope you can get this sorted out as soon as possible.
I think it’s outrageous and absolutely insane. I don’t know if it’s the senselessness or the injustice part that makes me more mad. Whose rights is this law protecting? Who benefits from it? It puts both Pearlsky and you in a horrible helpless vulnerable situation… so what’s the flipping point?
Sigh. The challenges that gets thrown at us(parents of severely disabled children) just never seem to end. The wheelchair debacle was bad but almost fades into insignificance when compared with this.
Have you looked into a medical power of attorney?