Count to 22. Or is it 21? Either way, ugh. And Fort Knox.
Federal laws and regulations declare that eligible students receive special education “through age 22” and “between the ages of 3 and 21, inclusive …” States interpret this differently. Some states end special education at the 21st birthday, others at the 22nd. Thereafter, the state has adult programs. The laws about adult programs are vastly different than those concerning schools.
About a month before Pearlsky’s 22nd birthday she went into an adult program. She would be the youngest in any program. We checked out five possible programs, three were so incredibly depressing and difficult to even look at that I honestly quietly slipped into the bathroom at the first I visited and threw up. These programs were recommended by the state and the school.
That program was diametrically opposed to Pearlsky in every single demographic. Age, race, gender, etc. The staff looked depressed and most “clients” were just sitting around doing nothing. “Nothing” as in NOTHING.
There was one program that seemed perfect. We went through much of the intake, the staff was excited about Pearlsky, and then when we were just about done with the process … nothing. Silence. They would not return my calls, nothing. They sealed up like Fort KNOX. It was so bizarre. My best guess is that someone in the hierarchy found this blog. I don’t know. There is one woman who does know, and she may see this. I hope she does and reaches out.
Pearlsky started a program that was our second choice. I visited every day. And typically, I found her doing NOTHING. The woman running the program is an SLP (speech and language pathologist) by training, and an incredible micro-manger. She had rules and they had to be followed.
- Any activities had to be AGE appropriate. Pearlsky was not allowed to have any “toys” or interactive activities that were not age appropriate. iPads are frowned upon, but if she had one, she could not have items on it that were not AGE appropriate. (Note: there were paper cut-outs on the wall and hanging from the ceiling of chickens and things; a multi-color birthday chart was on the wall, etc.)
- Pearlsky could not be given medications by oral syringe. Period. She must use a cup or a spoon. I had doctors write orders for the oral syringe, they were ignored. It is the only way she has ever taken medicine for the last 22 years. The nurse wanted to use the oral syringe; not allowed. Why? No reason given. (Note: the nurse would take Pearlsky into her office to give her meds, lock the door, and use the syringe.)
Pearlsky would come home famished. No reason given. (Duh.) And more. And, there are no laws to protect her, no recourse but to go somewhere else.
After talking to some other people, I decide to call the state agency responsible for Pearlsky and her adult program.
I’ll make you a deal. Give me the money you pay those people, and I will keep Pearlsky home, not feed her, barely give her medicines, and have her sit and do nothing. Oh, I will let her use an iPad with one non-age appropriate app.
And you know what? They agreed. For real. On Pearlsky’s 22nd birthday, the day the school district stopped paying for her and the day the state took over, she stopped going to
hell the program. I have access to a bunch of money and hire people to work with Pearlsky at home, to get year round tickets to fun things for her (aquarium, zoo, children’s museum, etc.) and more. It is a bit of work (they don’t just hand me a pile of unmarked 10’s and 20’s) but it works!
While under 22 (however you define that) your child is protected by IDEA, NCLB, FERPA, and many more acronyms which now are vital in my special ed advocacy role, and vital to you when dealing with your disabled child and school. After that, there is not much. No real protections in the same sense. But you know me (well, you knew me until I took my blog sabbatical), Pearlsky will always be protected.
You do realize that the next step is to turn what you are doing for Pearlsky into a group program? Just in case you have nothing else to do.
I agree with the other commenter, you may be the man to lead the revolution! I mean, obviously, you do have other things to do- a lot of things. However, with all the technology and websites for finding people and places and money and things, maybe you can direct a director and start something that works; something that actually helps people! One project at a time, though, eh? Focus is your childling 🙂
Best person ever to be deciding on where she goes and what she does!!!
This is fantastic news! I just don’t know how you work such magic! I agree with the commenters above — yes, group program and yes, lead the revolution!
PS – thanks for emailing, I’ll be in touch 🙂
I have managed a group day program (ATE) and what you pointed out is an issue everywhere. No matter how hard I tried it always seemed to happen at my program. We did extra training, higher staffing ratios, more selective entry processes. Every time we got ahead of the issue there was a funding change or we were directed by our county to take more people or risk loosing future clients.. The system is designed to promote this type of care and it’s infuriating. Sadly not all families have the time, energy or ability to do what you do. You are rare and all the more valuable to this community for it.
Day programs are as evil as group homes. I choose to believe in hell, only so that horrible people – like the man who threw away the beloved 30 year old teddy bear belonging to a 72 year old woman because it wasn’t age appropriate – have somewhere to go. I once got into it with one program manager who dictated that one of the men I cared for not be toileted, or changed when he soiled himself, because he was a hitter.
I bet you could create a co-op day program for folks like Pearlsky, who have families to care about them, who are similarly horrified by these sick for-profit centers.
Damn you really can fly. How did I miss this post?
The statement that day programs and group homes are evil is wrong on so many levels. Many of these programs (at least where I live) are not for profits, and almost all of them struggle to break even. Also, despite the rhetoric these days it’s worth pointing out that these programs, just like institutions, were designed with good intentions.
Group homes are a great alternative for highly behavioral or medically fragile people who would otherwise live in a nursing care facility or institution, and day programs are often times the only alternative for people who don’t want to work and would otherwise be stuck sitting at home.
Our medicaid funding in this country tends to dictate services that are not individualized and delivered in a institutional manner. Having family and others close to me with disabilities I can say that when you get to a program management role in this world it truly changes your perspective. You go from wanting to do everything right for your clients to balancing things in order to cause the least harm to your client. Yes there are a holes out there, but please don’t generalize. I would like to maintain my belief that I am better at what I do than them.