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: Um...you 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 Hospital...so it can be determined if she is safe to ride on the ACCESS bus?

Scheduler: Yes...it'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...





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



38 comments:

  1. This comment has been removed by a blog administrator.

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  2. Wow. That is ridonk. Hugs from Cali.

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    1. Thanks so much for taking the time to read it, Anne, and thank you for the cyber hugs! I hope you had a good laugh; sometimes it's all you can do! Have a wonderful week! :)

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  4. Oh, my. God bless your sense of humor. Perhaps Hannah will get an employee discount that will make this all worthwhile. Hugs.

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    1. LOL...or better yet - free samples to bring home for Mom and Dad! ;)

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  6. Wow, just wow. I've experienced some level of this idiocy with a relative but not to the extreme you're dealing with. My heart goes out to you all and dear sweet Hannah.

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    1. Thanks so much for taking the time to read my post, Lisa! Thank you for the well-wishes, too. We're good at the moment; Hannah is happy and healthy, so all is well in our world. For now we can just laugh off the idiocy. I feel bad for the families who are facing REAL hardships because of such messed-up policies - families who don't have voices as loud or as far-reaching as mine.

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  7. Hi Stephanie, this is the 1st time I've read your blog. Enlightening... I'm glad you can see the humour in it :) Hugs to you & Hannah

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    1. Thank you for taking the time to read my post, Angie, and thank you for the cyber hugs! Take care and have a wonderful week! :) ~Stephanie

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  9. Indies Unlimited sent me, and I must say what a frustratingly bizarre labyrinth you live in. Best of luck to you and to Hannah in her new job - maybe those who helped you along the way have already been sampling her product

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    1. LOL! Thank you very much, Armen, for taking the time to read my post. You're right; with the crazy, mixed-up way this system "works", you'd think all involved were as high as kites! Take care and enjoy the rest of your week! :) ~Stephanie

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  10. Interesting story. Thanks for sharing. (Indies Unlimited sent me.)

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  11. Following from the Indies Unlimited blogfest. This sounds intriguing and certainly wants me to go back to the beginning to understand the difficulties you have been encountering. I really hope things work out for you and Hannah. (My own granddaughter has that name but I'm thankful she suffers from nothing worse than diabetes which she has well under control. She is studying bio-medical science, partly inspired by the technology that enables her to lead a normal life.)

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    1. Thanks for reading my post, Frank! We'll be fine. What I've learned over the years is that whether things "work out" around us or not, we can still find beauty worthy of enjoyment in life; it's just a choice to be made (although it's certainly easier for some than others). Keeping a good sense of humor about it all just makes it easier for those of us who are faced with a few more challenges. Congratulations to your Hannah for all of her successes! Best of luck to her as she pursues her interest in bio-medical science! Take care and enjoy the rest of your week! :) ~Stephanie

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  12. Hi Stephanie. Thanks for stopping by my website from IU. My heart goes out to you and your family for the challenges you are facing. My grandmother was called Hannah and she was my hero and biggest supporter in my life. Your Hannah is a lovely child and she's probably very smart and sensitive. Usually children who have challenging difficulties are brilliant inside. My best wishes to you and your family.

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    1. Thanks so much for stopping by, Lilian, and for the kind words! Take care and have a wonderful holiday! :) ~Stephanie

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  13. Hi Stephanie! I hope you and your family have a wonderful holiday. Hugs to you and Hannah!!

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    1. Thank you, Rayne; you have a safe and wonderful holiday, as well! :) ~Stephanie

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  14. God bless you and Hannah! Thank you for sharing.

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    1. Thank you for taking the time to read my post! I'll give Hannah an extra hug for you. Take care and have a festive holiday season! :) ~Stephanie

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  15. My heart goes out to you and Hannah. My son only has autism and advocating for him only show me the tip of the iceberg of all the hoops a parent has to do for a disabled child, which is totally unfair. I really hope that everything works out for you and Hannah.

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    1. Thanks so much, Gigi! I'm sure everything will work out in the end; it always does, one way or another. When things get frustrating, I just like to make a game of it, guessing how many demonstrations of idiocy of the system I will encounter. This particular one just happens to have a lot. ;) Best wishes to you and your son. Take care and have a festive holiday season! :) ~Stephanie

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  16. It's the same in the UK. Been reading nickiandtheboy blog and they wanted her to drive her son to another city to attend a meeting, having spent hours filling out a 40 page questionnaire. It's so wrong.

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    1. Thanks so much for taking the time to read my post! The world feels so much smaller when you hear about folks an ocean away facing similar challenges and frustrations. That being said, I intend to include in my next post some thoughts on the importance of being thankful for the services we DO have access to here in the states (and there in the UK) - even when there seems to be a heaping helping of ridiculousness along the way. We just got home from a family vacation to Mexico, where we were sadly reminded that there are far too many unfortunate souls who are simply born to "the wrong" countries...ones that offer no assistance at all to the disabled. Thanks so much for sharing, and enjoy the rest of your weekend! :) ~Stephanie

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  17. From where I am standing I see a lady doing an incredible job under extreme duress, same as Nicki. Go well. Xxx

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  18. My heart goes out to you, dear Stephanie. Being the mother of this dear soul has made you a hero. God bless and keep you.

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    1. Thank you very much, Robin, for taking the time to read my post, and for your kind words. I don't know about hero, but between the strength I have witnessed in Hannah and the strength she has demanded from me, I have certainly grown more wise and much stronger over the years! That's good, though; she and her siblings deserve that and much more. Take care and have a wonderful weekend! :) ~Stephanie

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  19. I hope Hannah gets her wish to sit in the sun; and I hope you get the services you need to take care of such a lovely young woman. You sound like a wonderful mother.

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    1. Thank you very much, Cathey, for taking the time to read my post and for your kind words. I can guarantee I will be ensuring Hannah's time in the sun. I can also report that I have pulled Hannah out of the jobs program. It just wasn't going to be a safe situation for her. That being said, it's looking like she is, in fact, going to get the services I was hoping for. We'll continue to take life one day at a time, but for right now the future is looking rather bright! Take care and have a wonderful weekend! :) ~Stephanie

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  20. Found you on Twitter. This is the most hilarious breakdown of the state of affairs for services for disabled individuals that I've seen! Wow!!! And I'm still trying to figure out how they will get her chair through the mud to water the plants -.- and the meeting with no wheelchair access! Riding the bus to see if she CAN ride the bus! I hate to say it but I was laughing at the end! Good luck BTW! I'll end up in the same position with my kiddo in a few years.

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    1. Thank you so much for taking the time to read my post, and there's CERTAINLY no need to apologize for laughing! Laughing is all you CAN do when faced with such nonsense! Best of luck to you as you face down your own little slice of bureaucratic insanity. Feel free to reach out, should you ever need a sympathetic ear to vent to. Otherwise, I look forward to chuckling my way through YOUR sorted tale and learning what exciting and inventive new ways the system has devised to make us shake our heads and roll our eyes! ;) Take care and have a wonderful week! ~Stephanie

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  21. So sad that you have to jump through such ridiculous bureaucratic hoops just to get your daughter what she needs. I admire your tenacity and ability to look at the situation with humor. Not many have the strength to do that. Prayers for you and your sweet daughter.

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    1. Not sure why this showed as Unknown. Sorry about that.

      Susan Hughes

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    2. Thanks, Susan, for taking the time to read my post and for your kind thoughts. I don't like to get into political talk too much, but I will say this. I am for governmental programs meant to help those in need. I'd be a huge hypocrite if I said otherwise, since my girls benefit from a few of them. That being said, I wish a group of mothers could sweep their way through all the programs, cleaning up the nonsensical and ridiculous waste as they go. It would save taxpayers millions and save people like me our sanity! In the meantime, I can only rely on my sense of humor to see me through. ;) Take care and have a wonderful week! :) ~Stephanie

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