Posted in Developmental disability, Developmental disability service system, disability rights, HCBS, medical, Self-advocacy

Best hashtag ever: #GetYourBellyOut

#GetYourBellyOut is the best hashtag ever,

I’d better backtrack.

I had an ISA meeting.  That’s Individual Support Agreement.  At the last second, they brought a Surprise Administrator.  That is what I am calling the lady who showed up at the door to the meeting even though I’d been told that the only people present would be Laura (my DPA and soon to be adoptive mother) and my two case managers.  Surprise Administrator (SA for short) was someone who works in the Howard Center administration.  Surprise because they didn’t tell me she’d be at my ISA meeting until she was at m

The ISA is Vermont’s version of a person-centered plan.  It, of course, just like in other states, does not have to be either a plan or person-centered to qualify as a person-centered plan.  The meeting was certainly not very person-centered.  It degenerated into a shouting match mostly.  And a lot of it was the Surprise Administrator telling me that I was off-topic.  At my own ISA meeting.  When attempting to explain my ISA goals.  Which were “off-topic” because they didn’t like

So it was good that there was a moment of comic relief in all that because otherwise it was just a shitshow that went nowhere productive.

This moment of comic relief came at an unexpected time.

I had defined my first goal as survival.

I meant it.

I actually had specific, concrete actions I wanted taken in order to get to that goal, but the Surprise Administrator was busy telling us that this was impossible.

So at some point an exchange very close to the following took place between Laura and the Surprise Administrator:

Surprise Administrator: Survival isn’t a goal.
Laura: Yeah it is!
Surprise Administrator: It’s a vague goal.
Laura: What’s vague about it? If her heart keeps beating…
Surprise Administrator: Yeah but some people define survival differently than others, like some people define it as being hooked to all kinds of tubes and vents and stuff.
Me: (silently but firmly pull shirt up to show two feeding tubes and an ostomy bag)
Surprise Administrator: OH MY GOD I DON’T NEED TO SEE THAT PUT YOUR SHIRT BACK ON RIGHT NOW!

After the amount of sheer bullshit that went on in that meeting, I can’t even try to make myself feel bad about the amount of giddy, giggly, juvenile pleasure I got out of that incident.  Especially given how sleep-deprived I was at the time.

So later on I discovered the best Twitter hashtag ever: #GetYourBellyOut.

It’s the complete opposite of the Surprise Administrator’s hashtag, which I imagine would be #PutYourShirtOnMel.

The idea is people with ostomy bags are supposed to pull up our shirts, take selfies, and post the pics on Twitter under the hashtag #GetYourBellyOut.

It was started by a guy with a colostomy.  The point is to reduce shame and stigma around colostomies, ostomy bags, stomas in general, etc.  It’s mostly about colostomies but can apply to anyone with similar things.  My ostomy bag goes over a healing jejunostomy stoma after the tube was removed, and I’ll continue to need an ostomy bag to catch the bile until it heals.  Which could be months.

So this is the picture I posted to #GetYourBellyOut:                                               

#GetYourBellyOut

Which is basically, in the above picture, roughly the same sight the “PUT YOUR SHIRT BACK ON” comment was inspired by.

I’m just… highly amused there’s a hashtag for exactly what I did spontaneously out of frustration.

Anyway here’s a Get Your Belly Out website for Crohn’s and Ulcerative Colitis.  I don’t have either of those things, but I love their website picture, which is a bunch of bare bellies with stomas and ostomy bags! 

STOMA BELLIES!

I’m a huge fan of anything that makes people realize that bags, tubes, holes in weird places on the human body, and the like are a normal part of life for a lot of people. And not a cause for excessive bellyaching (oh come on, I had to say it) about having to see it…

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Posted in Developmental disability, Developmental disability service system, disability rights, HCBS, Self-advocacy

We need to move further away from traditional institutionalization, not back towards it.

I’ve probably said this before.  But it’s so important I feel like it needs a standalone post.  

Mel holding up a set of house keys.
If only having my own house keys were enough to guarantee my services are not institutional.

I talk a lot about the dystopian hell that exists beneath the shiny surface of the developmental disability home and community-based service (HCBS) waiver system.  Because I live in this hell.  Because people living in this hell don’t get heard from enough, especially online.  Because if something terrible is happening to me, it’s happening to the other people in this system as well.  All kinds of good reasons.

But people misuse the horror stories coming out of the HCBS system.  They use them to say that we need to bring back the old system.  Traditional institutionalization.  Or new shiny variants on it like those farm-based “intentional communities” — a weird word considering people don’t get a choice as to whether to live there.  Those are still institutions, by the way.  So are large parts of the HCBS system.  Institutions are determined by who has what kind of power and control, not by the shape of the building or the number of people living there.

Anyway.

To be very, very clear.

The horror stories coming out of the HCBS system all come from the things HCBS has in common with traditional institutions.

So the problem is not that we have moved too far away from traditional institutions, and need to move backwards to make things better.  The problem is that we have not moved far enough away from the practices of traditional institutions.  The solution is to be less like a traditional institution, not to bring back traditional institutions.

Oh and about that “bringing back the institutions” thing.  I know a lot of the larger institutions closed.  But not all of them did.  It’s not like we just have a world empty of traditional institutions, so “bringing back the institutions” is a concept that doesn’t quite make sense.  We’re still fighting to close them.

But we have to replace them with something better, or people just get moved from one kind of hell to another.

And we’re supposed to be so grateful for this that we don’t complain about the things that have stayed just the same as traditional institutions.  Which is a whole lot of important things.

So again.

The problem is not that we have left traditional institutions behind and need to go back to them.  The problem is that we have not gone far enough away from them and we need to become even less like them.

Anyone using HCBS horror stories to promote traditional institutions is coming at the problem bass-ackwards.  HCBS horror stories should cause people to want to close all the traditional institutions and make services resemble old-style institutions as little as possible.  On a deep level involving power and control, not on a cosmetic level where all you’ve done is slap some new decorations on the walls of the old system.

Posted in Developmental disability, Developmental disability service system, HCBS

My assessment scores, for reference purposes.

Howard Center has several divisions.  There is Mental Health, which it is best known for.  There is also Substane Abuse.  There is Children and Family.  And then there is Developmental Services, DS for short.

I get services through Developmental Services, through a Medicaid waiver program called the Home and Community Based Services (HCBS) program.  In the state of Vermont, to get developmental disability services you must have either autism1 or an intellectual disability or both, and have limitations in certain life skills.

So proving the autism diagnosis wasn’t hard, but they wanted a current assessment of my life skills. So I was 24 years old, almost 25, when this assessment was done. It was done using the ABAS, the Adaptive Behavior Assessment System, the “Adult Form, Rated By Others,” meaning that my staff person (who had worked for me for 3 years at that point and knew my skills very well) rated how often I could do a long series of tasks listed. She asked specifically about whether it should be as I do with or without assistance, and was told to rate me as without assistance so they could get a true estimate of my abilities. My case manager from Easter Seals was there in the room the whole time. I was too nervous to even look at the test so I just sat there doing nothing. The test basically asks how often a person successfully does a series of specific tasks, from always/often to rarely/never.

An important thing to understand about this test is that it is supposed to test your abiliities as they are applied to the real world.  That’s why it asks how often you actually do these things.  Because it’s not about whether you have a theoretical understanding of something, it’s about whether you can actually do it.  At least, that’s how the test is meant to be applied.  Obviously it’s subject to the interpretation of whoever’s filling out the forms.

So these are the scores I got in the different areas.

First are the scores in each specific skill area. These are out of a scale that runs from 1 to 19, with 10 being average, and 1 being the least capable in this area and 19 being the most capable.

  • Communication: 1
  • Self-Care: 1
  • Self-Direction: 1
  • Community use: 2
  • Home living: 2
  • Health & Safety: 2
  • Leisure: 2
  • Social: 2
  • Functional Academics: 3

They then divide that into three areas:

  • Conceptual: 5
  • Social: 4
  • Practical: 7

Conceptual has a possible score between 3 and 26, Social has a possible score between 2 and 51, and Practical has a possible score of between 4 and 64.

Then you’re given a Composite Score that sums everything up.

  • Composite Score: 47

The composite score is from a range of 40 to 120.  My score is in the lowest percentile range for this test which is given only as <0.1.  The numbers are meant to mirror the numbers on IQ tests, so 100 is average.

It’s also important to know that at the point in time this test took place, I was much physically healthier relative to now.  The majority of the stuff I couldn’t do, that this test measured, was due to cognitive disabilities related to developmental disabilities.  I did not suddenly and recently become unable to do these things because of physical illness or disability.  I have been unable to do these things for quite a long time.

As far as how I see the accuracy of the test, I think it was pretty accurate.  There’s only one area that I find misleading, and that’s the communication area.  I got the lowest score possible for communication.  This didn’t make sense to me, or to the tester given that she had a coherent conversation with me.  But I asked my staff person what happened, and she told me that the test just happened to ask questions about the parts of communication that, especially at the time, I was the worst at:  Small social nicety words.

So things like please, and thank you, and hello, and things like that.  And while I’ve gotten better with those, at the time I really did never say those things to anyone.  So she had to mark it down as rarely/never.  So even though I was a writer, I got the lowest communication score it was possible to get.  But I can’t say it was totally inaccurate, because for what it measured I really didn’t say those things.  But it gives a very misleading idea about my communication skills, that the test didn’t even bother to clarify how well a person did things other than really basic words.2

The rest of the test just seems pretty accurate to me:  Left to my own devices, I can do very little for myself.

The important thing here is that this was documented back in 2005 by Howard Center.  As part of the intake process.  So acting like I am suddenly capable of doing these things, or acting like my difficulty doing them is new and entirely due to physical disability, goes against stuff they have in their own files about me.  I mean, in order to get into HCBS services in Vermont I had to prove both that I had a developmental disability of the sort they serve in Vermont, and also that it limited me in a certain number of life areas.  And this was the limitation part.  And it definitely showed that I was very limited in every single one of the life areas tested.

And there are specific reasons for that, but that’s a topic for another post.  I just want to document the fact that my inability to do this crap is well-documented and was known to be related to cognitive developmental disabilities thirteen years ago, so none of this should be a surprise to anyone.  Nor should the fact that skills training was tried extensively in California and didn’t take.  And all the other things they used to know and have conveniently forgotten.

Also I hate assessments.  They make me feel like a collection of deficits.  It’s a very icky and medicalized feeling.  Like having the important parts of you disappear like they never existed.  No depth.  But I’m glad I have documentation of this nonetheless.

 


1 By which they mean any label connected wth autism, so Asperger’s and PDDNOS count, unlike in some states.  Which is not as much of a moot point as you’d think, because people still have old diagnoses from before the DSM-5, and also large parts of the world don’t use the DSM and have not merged all the diagnoses into one.

2 There’s a larger problem at work here that I don’t want to get too distracted by, but is huge: There’s an assumption out there that skills run in a line from basic to advanced, and that you have to have the basics before you can do the advanced stuff, and that everyone progreses by first learning the basics, then intermediate level, then advanced.  And that everyone progresses along the same line, with the same set of skills, and so forth.

Which makes absolutely no room in the world for the fact that there are many people who learn skills in a totally different order.  Or who can do something advanced but not the basics, like my friend who is severely dyscalculic and spent her childhood in remedial math because she couldn’t do arithmetic.  Then a teacher found out she was obsessed with division by zero (which her teachers thought meant that she really didn’t grasp math) and told her to take that and run with it, and she reinvented the foundations of calculus.  And got out of remedial math for good.

There’s lots of people who learn things in a different order.  And there are actual disabilitis that cause a person to do something that seems advanced without being able to do the basics at all.  This often confuses people.  For instance, there are people with autism-related language disabilities that cause them to use very long words but have trouble with “simple” language.  And the very long words convince people that they have no language problems.

So it’s actually totally in keeping with that kind of thing that I failed a communication test that tested “easy” stuff, at the same time I was writing long eloquent articles on the Internet.  I really couldn’t do those “easy” words in conversation.  So I feel like the test was accurate to the specific things it tested, but misleading as a test of overall communication because communication is a lot more than those supposedly “easy” parts.

 

Posted in Developmental disability, HCBS

Enjoying something doesn’t make it okay.

Nor does it make it okay to hurt someone because they enjoy what they’re getting to do while you’re hurting them.  (Note:  Throughout this post, remember that anything that happens to me is happening to other people, and that’s one of the reasons I write about these things.  And as usual I’m not asking for anything that any other client doesn’t deserve as well.)

I had a recent and very surreal meeting with some people from Howard Center.

One of the many surreal moments came when Lauratried to bring up the issue of medical neglect within the recreational services I was getting.  I was part of a community garden.  I needed help maintaining my plot.  I could do some things but not others.  Anyway, they basicaally made me do things a person with severe osteoporosis and autonomic dysfunction should never be made to do, with regards to bending, lifting, and heat exhaustion.

The woman from Howard’s response was a bewildered “But I thought Mel liked gardening.”

Yeah.  I like gardening.  I don’t like bending clear to the ground with a stress fracture in my vertebra and recently healed rib fractures all over the place.  Nor do I like not being able to take breaks to avoid heat exhaustion without all assistance with the garden stopping for the day.

And yeah I actually did enjoy getting on the ground and getting my hands in the ground and all that.  Even when it was bad for me.

It doesn’t mean that what they did to my body was okay.

cropped-512-gardening-02.jpg

That is a picture of me doing something I loved doing and was proud of.

That is also a picture of me being forced to do something in a way that was physically dangerous to me.

These things are not contradictory.

In fact, it’s very common in human services for them to go hand in hand like this.

The fact that I enjoyed gardening doesn’t make it okay for them to insist that I garden in a way that’s unsafe2 for me or get no chance to garden at all.

Actually, the fact that I enjoy it makes it worse that they did this.

Because they can use what you enjoy in order to get you to do things the way they want you to do them.  Even at the risk of great harm to yourself.  Because you’re way more likely to agree to do something like this if you enjoy the activity in question.

So.  No.  My enjoying it doesn’t make what happened okay.  It makes it worse, if anything.  You shouldn’t have to risk broken bones and heat exhaustion to get any chance at all do things you like doing.  But that was the choice I was given.  And it’s not okay.  It’s far from okay.

Real Social Skills has a good post on a related topic (which I can say from experience with behavior mod, is true even when you do enjoy it, it can still be harmful):  Appearing To Enjoy Behavior Modification Is Not Meaningful


1 Laura is:

  • My durable power of attorney for healthcare
  • Frequently my cognitive interpreter at meetings
  • Someone who helps me advocate for myself and is much more effective at it than I am
  • My ‘second mother’ (and eventually will legally adopt me), has served in a semi-parental role since I was 17.  (Doesn’t replace my parents, but has helped them out a lot.)

So she’s there at a lot of important meetings.  One of the most important things she does for me is cognitive interpreting:  She helps me understand what other people are talking about, and helps them understand me even at times when I’m unable to get language across.  This is a form of interpreting that most people don’t even know exists.  Sometimes also called English-to-English interpreting when it happens in English.

The fun part is when she says what I’m thinking, I verify that she’s indeed said what I’m thinking, and she’s told that she couldn’t possibly know what I was thinking because the other person couldn’t tell what I was thinking.  If the other person could tell that well what I was thinking, I probably wouldn’t need a cognitive interpreter so badly.

2 Because people seem to use ‘unsafe’ to mean anything from dangerous to uncomfortable these days, let me clarify that I mean dangerous.  Heat exhaustion is dangerous, especially when you have autonomic dysfunction.  Broken bones are dangerous.  Broken bones when you have adrenal insufficiency are especially dangerous.  This wasn’t subtle.