Sunday, November 1, 2015

Your Daughter Should Be A Marijuana Farmer

This is Hannah's final year of high school. I've been emphatically encouraged by case managers, teachers, therapists, and parents to do whatever is needed to get Hannah onto something called the Basic Plus Waiver, so she'll receive the services she'll need once she's out of school. To be honest, I don't know much about it; all I know is that everyone says this is something Hannah needs. But - of course - there is a long waiting list. I've been told the best way to avoid spending years at the bottom of the wait list is to participate in a school-to-work program. Apparently, 100% of the kids who participate in this program (regardless of the level of their disability, by the way), are accepted onto the Basic Plus Waiver.

So now we get to the true ridiculousness of this whole situation. A reminder: Hannah has a rare genetic disorder, Wolf-Hirschorn Syndrome. She is non-verbal, non-ambulatory, incontinent, is exclusively G-tube fed, has severe gastro-intestinal reflux disorder (GERD), has a seizure disorder, and has the mental capacity of about a 6 to 9-month old. In order to get the services she needs (physical therapy, personal care hours, respite care, etc.), she needs to first GET A JOB.

Here are just a few of the many head-shaking, eye-rolling moments from our job-hunting journey thus far:

Quote from state case managers, jobs program managers, and teachers: Look, I know this doesn't seem to make much sense. Hannah won't need to work much - maybe just an hour per week. If you can just show you're willing to play the game, it should be enough to get her the waiver she needs.


In order for Hannah to participate in the jobs program, I had to sign her up to receive services from the Department of Vocational Rehabilitation (DVR). I had to fill out an application for her. I decided to be honest with my answers. One question asked Hannah to list her working skills. I wrote "none". Another asked about why she was interested in working. I wrote that she has no interest at all in working - that we were only going through the motions because this is what we were told we had to do in order to receive services from the state.

A week later I received a message from the director of the school-to-work program. He was in a panic after having been notified by the DVR that Hannah "may not have any interest in working." I called him back, thinking we may very well get kicked out of the program. He didn't even ask me whether we wanted to stay in the program or not. Upon me saying, "Hi, I'm calling in regards to Hannah," he just said, "Oh, I'm so happy to hear that you want to continue with the program. I'll notify the DVR right away."

What ran through my mind: Why weren't we just kicked out of the program? I didn't even have to defend myself at all! Oh wait - if Hannah is kicked out, this school-to-work program doesn't get the state funding Hannah would have generated. They don't really care if we want to be in the program; they just want to be assured that funding.


A few weeks later I had to go to a mandatory intake interview at the DVR. The case manager said the interview would take approximately an hour and a half, and Hannah was required to attend.

Me: Why? She can't contribute anything, and she'll self-abuse if she's forced to sit in an office that long. She'll punch herself in the head to the point of bruising.

Case Manager: I'm sorry, but Hannah will need to attend.

Me: [Sigh] Fine. The last time I was there I didn't see your handicap-accessible entrance. Where is it?

Case Manager: ...Ummm...Off to the side of the building?

Me: I don't think so; I looked.

Case Manager: Hold on just a minute; I'll go check.

[A few minutes pass]

Case Manager: know what? I think it'll be fine if Hannah doesn't attend.


Another thing I had to do to for Hannah to participate in the jobs program was to sign her up for ACCESS bus service. That's a division of the metro bus services that provides door-to-door rides for disabled individuals. First I had to fill out a 4 or 5-page questionnaire, including doctors' signatures, regarding the level of Hannah's disability. Then Hannah had to be evaluated by a professional at a hospital on the other side of Seattle [presumably because I - and the doctor - may have lied about her level of disability on the forms].

Scheduler: We'll need Hannah to come to Harborview Hospital for an evaluation. We will provide transportation with an ACCESS bus, free of charge, and her personal care attendant will be permitted to ride free of charge, as well. Normally the evaluation lasts an hour, but we'll just be measuring the size and weight of Hannah and her wheelchair to ensure she's safe to ride the ACCESS bus, so it will only be a half-hour appointment.

Me: So let me get this straight. Hannah will ride on an ACCESS bus all the way across Seattle to Harborview it can be determined if she is safe to ride on the ACCESS bus?

Scheduler:'s just how it's done.


Me: So...if and when Hannah gets a job, who will ride with her on the ACCESS bus? She can't ride alone.

Jobs Coach: A personal care attendant.

Me: And who hires and pays the personal care attendant?

Jobs Coach: You.

Me: Huh...this could get expensive at $20 per hour. ...And I'd need to pay that personal care attendant to care for Hannah the entire time she's at work? The personal care attendant would be responsible for, say...changing a blow-out diaper or handling the situation if she has a seizure?

Jobs Coach: That's correct.

Me: And where will the diaper changes occur? It's not like most places of business offer a changing table large enough for a 50-pound, 20-year-old.

Jobs Coach: Um...we'll be working out the details as we go along...


And finally...

We had a brainstorming meeting, so we could best determine an appropriate job for Hannah. I looked around the room at the 8 individuals [who were all paid by our tax dollars in one capacity or another]...sitting there for over an hour, discussing what job would be best for our "potential employee".

Group Leader: What is Hannah best at?

Me: Sitting. She can sit independently.

Group Leader: What does she like to do best?

Me: Sit in the sun out on our deck.

Classroom aide: She also likes to splash her hand in water.

Group Leader: So she'd do best to work outdoors, ...possibly with water...

Jobs Program Representative [spoken with a straight face, in all seriousness]: I've got it. I think we should look into Hannah working at a recreational marijuana growing facility. She could water the plants.

Meeting adjourned.

The state's apparent wish...

Hannah's wish...

"Come on, state of Washington...SERIOUSLY?"