Just the facts ma’am. Then I’ll shut up.
I don’t know if this topic is of interest to anyone that does not have a 17 year old … I’ll stop ranting after this post. I have gathered the facts and will share them in this post concerning health care and education when your child (any child) reaches the age of majority…
A child is automatically emancipatedsee here and scroll down the page. I am talking about the U.S., I assume things are similar in other countries, but I don’t know.when s/he reaches the age of majority. The age of majority is decided on a state by state basis, most of them define it as age 18,
Once emancipated, the child is considered an adult under the law. His or her mental status is not taken into consideration for this. No matter what, nothing will stop Pearlsky from becoming emancipated, an adult (as opposed to a minor) in the eyes of the law.
The U.S. Department of Health and Human Services (“HHS”) issued the Standards for Privacy of Individually Identifiable Health Information (“Privacy Rule”) to implement the requirement of the Health Insurance Portability and Accountability Act of 1996 (“HIPAA”).
… the Privacy Rule requires covered entities to treat an individual’s personal representative as the individual with respect to uses and disclosures of the individual’s protected health information, as well as the individual’s rights under the Rule. ~HIPPA
As to who the “personal representative” is (from here) …
If the Individual Is: An Unemancipated Minor
The Personal Representative Is: A parent, guardian, or other person acting in loco parentis with legal authority to make health care decisions on behalf of the minor child
If the Individual Is: An Adult or An Emancipated Minor
The Personal Representative Is: A person with legal authority to make health care decisions on behalf of the individual Examples: Health care power of attorney, Court appointed legal guardian, General power of attorney
Note that the second category does NOT include “parent.” Powers of attorney are rights (and powers) that an individual confers upon another. The individual must be able to clearly communicate that s/he wants to confer said powers, and others must witness this. This does not come into effect with our children.
Once your child reaches the state’s age of majority, s/he is an adult, an emancipated minor. You have no rights, at all, to health care information or decisions, it does not matter that you are the parent, it does not matter that your child is disabled (in any sense, in any severity). Unless a court of law appoints you as a legal guardian, you have NO rights.
The Individualized Education Plan that you do with school is all based on The Individuals with Disabilities Education Act (IDEA) under the U.S. Department of Education. Part B of the act deals with children aged 3 – 21.
Direct from the Act itself:
Sec. 300.520 Transfer of parental rights at age of majority.
(a) General. A State may provide that, when a child with a disability reaches the age of majority under State law that applies to all children (except for a child with a disability who has been determined to be incompetent under State law)–
(1) (i) The public agency must provide any notice required by this part to both the child and the parents; and
(ii) All rights accorded to parents under Part B of the Act transfer to the child;
That says that if you child has NOT been determined incompetent under State law (i.e.: you have not been to a court of law and have become a guardian, “determined … under State law” means “by a court of law in your state”) then all your rights transfer to the child. You no longer can sign the IEP nor make any decisions for the child. Your voice is totally muted.
It does not work to say, “Oh, they won’t follow that” or “They will do what’s right” … no. The penalties for violating HIPAA are too great for a medical facility to ignore. These are the laws and that is what we need to contend with.
It appears that I may be able to go to court before Pearlsky turns 18, contrary to what the state agency told me last week. I have read through most of the state law on this and their are some exceptions for the “mentally retarded” and, yes, those are the words they use. Works for me. It appears (and one lawyer has confirmed) that because she is mentally retarded and it is chronic, that I can, in fact, go to court at any time, and need to become her guardian AND her conservator, a separate but vital issue in itself.
I now need to find a team as the state form states: “a licensed psychologist, registered physician, and licensed social worker, each of whom is experienced in the evaluation of mentally retarded persons, must complete this form.” It is a six page form that they must fill out together, and it is filed with 120 days of the court hearing.
Are we having fun yet?
I think I should be sending you food baskets and crates of coffee to make sure you are properly nourished whilst working through this stuff.
Emma is so nice. Supporting you, SD, through the blog is about all I can do.
Wondering why all years of special education and medical paperwork wouldn’t suffice. Appears one government agency does not honor the other government agency’s work.
I know you will manage.
I can’t even read through this without getting 79 headaches. I’ve heard too many horror stories to not be freaked out on your behalf (I know you’ve heard all I have, and a million more). Of course I know you’ll come out flying, like always, but good freaking God. Sending hugs.
Ditto what everyone else is saying…but I had to laugh at the part where you refer to her cognitive challenges as being “chronic”…Wouldn’t it be nice to be retarded only part of the time like the bureaucrats you are dealing with?