Sep 25, 2011

Alice: " It would be nice if something would make sense for a change."

Ms. Wheelchair Florida 2011
Mayra Paulina Reyes
Speaker at the SPARC2011 conference

Warning: You'd better read this all the way to the end if you have or know a child with special needs.

In 1993 I fell down the special needs rabbit hole and found myself in a curious world. Like Alice of Alice In Wonderland after that fall "...I should think nothing of falling down stairs." Which by the way, I have and it is far less painful than obtaining help for your special needs child.

My first introduction to an IEP was in 1996. The same year STAND was formed by a very small group of parents and professionals
. Very small in every way. I attended an IEP workshop back in those early days and sat with an audience of about six individuals. Call us wildflowers.

Daisy: What kind of a garden do you come from?
Alice: Oh I don't come from any garden.
Daisy: Do you suppose she's a wildflower?

There was little direction in those days from the professionals who were supposed to be directing the parent so finding STAND was a gift from above. And even if you did receive direction from the directors you could count on numerous directions being incorrect at any given moment propelling you in the wrong direction.

Doorknob: Read the directions and directly you will be directed in the right direction.

It is a dilemma many of us face now but back in those days it was much worse. Even if you were intelligent enough to navigate statutes and fine print you still needed professional guidance and as Alice said, "curiosity often leads to trouble." Challenging an imperfect "system" often makes one slightly unpopular. Ask any whistle blower about that one.

Queen of Hearts: Now where do you come from?
Alice: Well, I'm trying to find my way home...
Queen of Hearts: Your way! All ways here are my ways!

Yesterday I attended SPARC2011 which STAND's for Stand Pinellas Accessing Resources Conference. It is the 5th annual resource conference put together by STAND. The list of presenters was so impressive I had a terrible time narrowing them down to just four. I ended up choosing a couple for me and a couple that would benefit my clients in the zero to three population. I wish I would have been able to sit in on ALL of lectures.

There were over 700 people in attendance. A far cry from the 1996 handful.

I've mentioned my journey regarding The Teenagers 18th birthday recently. She is followed by a program in the state of Florida which should have been able to help me with the transition to adulthood. It didn't. Actually the advice they gave me was more than wrong. It was really, really wrong.

Alice: Unbirthday? I'm sorry but I don't quite understand.
March Hare: It's very simple. Now thirty days has Septem-NO wait. An unbirthday, if you have a birthday, then you...

One of the presenters was the very articulate mom of a developmentally disabled son who turned 18 in February of 2009. She spoke on the Guardian Advocacy program which my state is fortunate enough to have implemented in 2008. The brain child of a kindhearted judge who was concerned about the special needs children whose parents did not have $6,000.00 to file for Guardianship, the Guardian Advocacy program insured the same rights as Guardianship but for a filing fee of $400.00. It is also a simplified process that a parent can accomplish without an attorney.

Currently the state of Florida is waiving the $400.00 fee.

The mom who spoke was the first parent to apply for Guardian Advocacy in the State of Florida. When she walked in to the courtroom the judge told her before she even opened her mouth...

"I don't like what you are doing."

The pioneer mom forged on and the judge granted her request anyway.

Alice: I simply must get through!
Doorknob: Sorry, your much too big. Simply impassible.
Alice: You mean impossible?
Doorknob: No, impassable. Nothing's impossible.

Here's a news flash for those of you who parent special needs children (and I include myself) especially those of you who have younger disabled children. And a news flash for people who DO NOT have a special needs child. I have spoken to many on this 18th birthday topic and ALL, yes, ALL have been horrified...

When someone turns 18 they are legally competent unless proven otherwise.
I don't care how OBVIOUSLY disabled your child is they are still legally competent. I don't care if your daughter thinks Martin Luther King Jr. is the son of God.

They are competent until proven otherwise.

Alice: Of all the silly nonsense this is the stupidest tea party I've ever been to in all my life.

This means if your higher functioning yet socially incapable child meets a predator on the Internet who just happens to have an STD they can hook up if they want to. Yes, this happened to a friend who happens to be an attorney.

This means if your disabled child wants to marry a louse who is only interested in their SSI check they can without your permission. In a similar incident a neighbor of mine spent $40,000 and four years getting the marriage annulled.

This means if you are 70 and your disabled son is 50 and you've managed to get away with being his caretaker since his infancy you may come up against a problem when he needs surgery 32 years later. Why? Because you are not legally able to sign and someone has finally challenged you.

This 70 year old mom is currently going through the process of becoming a Guardian Advocate.

It makes absolutely no sense for everything to change for a parent of a child who is emotionally, socially, and/or physically incapable to care for themselves simply because said child turns 18. But change it does unless you take the steps to protect your child by filing for Guardianship or Guardian Advocacy.

For a higher functioning special needs child Power Of Attorney may be an option but remember this: the child must be mentally capable of granting Power Of Attorney to the parent. When or if the donor (child) becomes incapacitated the document will lose it's effectiveness and enforceability unless this possible scenario is specified in the original requested document. This is commonly referred to as Durable Power Of Attorney.

Eaglet: Speak English! I don't know the meaning of half those long words and I don't believe you do either!

Summary: When your special needs child turns 18 they are no longer your child.

Alice: I wonder if I've been changed in the night? Was I the same when I got up this morning? I almost think I can remember feeling a little different. But if I'm not the same the next question is 'Who in the world am I?' Ah, that's the great puzzle!

Great puzzle, indeed.

Start now by aligning yourselves with other knowledgeable parents and groups like STAND. You'll be glad you did.

I'll keep you posted on the Guardian Advocacy process for The Teenager.

Let's hope it goes more smoothly than S-O-C-I-A-L S-E-C-U-R-I-T-Y.
That spells M-A-D-N-E-S-S.

Alice: But I don't want to go among mad people
Cheshire Cat: Oh but you must, you can't help that, we're all mad here. I'm mad. you're mad.
Alice: How do you know that I'm mad?
Cheshire Cat: You must be, or you wouldn't have come here.


Lilith said...

I agree but also had to apply for guardianship of Katie when she turned eighteen. Although we happen to be good parents, not all children are so fortunate I suppose. It's a heavy handed, complicated way of trying to protect the rights of handicapped people.

Elizabeth said...

I read a bit about the troubles that Single Dad had getting guardianship of his daughter. Oy.

I need to start this, I suppose, since my Sophie is turning seventeen in March.

Thanks for the information so artfully, black-humoredly told -- I do love that.

The Mad Hatter

Erin said...

Thanks for blazing the trail. Ive got 10 years before I cross this bridge. My 8 yo soon-to-be-adopted son is working on being able to write his first name this year. Would it be cheating to change his name to Bob?


Lillith: You are correct. There are many unscrupulous people out there who take advantage of the elderly and disabled on a daily basis

Elizabeth: Black humor,. I like that...

Erin....or Tom or Art or Leo. Three letter names are the best!

Zoey's mom, Heather said...

Oh crap ... she is not quite 5 but sounds like I should be getting my ducks in a row,like now, seeing Lord knows what lies ahead for us 13 years from now. I was just trying to figure out how it is I am going to transition her from the baby tub to a big tub without breaking my back. Seems like I should redirect my focus.Geesh.

Thanks for all you do, for all of us, who lag behind you a bit.

Melinda said...

How can we get you appointed to a government position to advocate on a higher level??


Zoey's mom: I am going though the same dilemma with The Baby about the tub thing. she is getting sooooo heavy and there used to be funding for bath chairs, etc at her age but the waiting list for the program she qualified for at 3 yrs (I learned this at the conference too) is now is now 12 years long! At 16 I'll be worrying more about guardianship for her and not a bath chair!


Melinda: ACK! ACK! ACK! I hate politics...although.....I could be enticed to run under the pseudonym of "GRAMBO."