as small as a world and as large as alone

6:45am August 17, 2014

I say that specifically because I don’t think people will infer ‘disabled’ from the mentally ill part. People expect me to just take pills, see a therapist, and then be able to go out in the world and get a job and do able people things.

Yeah, that.

It makes me enraged that mental illness is not treated as a disability, through the service system.

Lots of mental illnesses involve the same functional limitations that developmental disabilities impose on people.  As in, the exact same ones. In fact, some conditions exist in a strange area of overlap between mental illness and developmental disability.  These include things like:

• ADHD
• Autism
• Tourette’s
• (sometimes even) intellectual disability (given that it’s in the DSM)
• Childhood bipolar
• Childhood psychosis including schizophrenia and schizoaffective
• Schizophrenia in general (which is, in some forms, now being thought of as a neurodevelopmental disorder with clear signs from early childhood long before it becomes “clinical”)
• Fetal alcohol spectrum disorders
• Schizotypal autism
• Multi-complex developmental disorder (MCDD)
• Epilepsy, especially temporal lobe epilepsy, but in the past all epilepsy

All of those things occupy a grey area between developmental disability and psychiatric disability, which illustrates that both categories are accidents of history, not genuinely scientific splits within some objective medical system.

Anyway.

If I had my way.

I would make it like this:

People go to a psychiatric program for people who want to live on their own.  They get assessed accurately for what their skills are.  This would be done the same as it is for developmental disabilities and physical disabilities, with some modifications depending on the nature of the disability.  The assessment of what a person needs, would matter more than their actual diagnosis, and they might not need an actual diagnosis to get services.

The assessment would basically involve two parts:

One would be formal and standardized to some degree.  There would be a pre-made list of areas a person might need help with.  The person and possibly their caregivers or family would be interviewed or asked to fill out forms, or both, detailing how much help the person needs on their worst days.  They would be specifically invited to talk about their worst days, being told, “If we don’t know how things are at their worst, then we’ll plan for the best days, and we won’t be giving you enough services to cover the worst days.  So we know you may be able to do better than this sometimes, but what we need is to know enough to be prepared for the worst.”  Possibly with a built-in apology for making people have to describe themselves at their worst, since that can feel quite degrading, but it can also be necessary to determine the help the person needs.

The second part would be much less formal.  The person (and caregivers and family) would be invited to have written things out beforehand, to describe the areas they have trouble in general.  The things that are important to them, whether or not they are also on the more formal assessment.  They would then be able to talk about all of these things, especially in case the assessment missed any major areas of difficulty they have functioning in the world.  Which any assessment is going to miss.  So this would take place after they already knew what was in the assessment, and had been through that, and maybe had already seen the results written out.

They would also be asked to correct anything written on the assessment that seemed to overestimate or underestimate their abilities (still understanding we’re talking about their worst days).

Then, they would work together towards a plan of how to help with these things.

This could include meds and therapy but wouldn’t have to, at all, and they would not get pressure in that direction regardless of how severely disabled they were.

But the biggest thing, like the biggest part of services for physically and developmentally disabled people?

Having staff person assigned to them for a certain amount of time a week, ranging from 24/7 roommate arrangements to someone coming in once a week for an hour to make sure they’ve got everything in their household running smoothly.  This person could:

• Entirely do the task for them, without any input from them.
• Do the task, but do the task under their direction.
• Do the task under their partial direction.
• Help them learn how to do the task themselves.
• Help prompt them to do the task fully or partially themselves (prompting can be gestural, verbal, physical, handing someone something, and a whole lot of other things).

In whatever combination of those things, that the person preferred, for as long as they preferred it.

That’s the ideal of what physically and developmentally disabled people get today.  The only reason psychiatrically disabled people don’t ever get this help, even though they need it just as much, is basically that they’re looked down upon it’s seen as their fault, psychiatry tries to make it sound like if they took their meds and went to therapy then their functioning problems would disappear, and because psychiatry gives a lot of condescending and false explanations for people’s problems functioning (always stemming from one emotional conflict or another, somehow).  Psychiatry even sees it often as “enabling” someone (I hate that word, in most contexts, but especially that one) if you help a psychiatrically disabled person do what they can’t do.

So if a depressed person can’t get out of bed, then they are going to need someone to clean their house until and unless they become able to do it themselves.  It doesn’t matter if they ever become able to do so, or if they never become able to do so, they need that help so they should have it.

People need help with bathing.  People need help with cleaning the house.  People need help with money management (and if prone to mania, may want to make arrangements in advance for how to handle that situation without becoming patronizing).  People need help with doing household chores like laundry and the dishes and taking the trash out.  People need help taking care of their pets.  People need help paying their bills.  People need help going to work and getting through their workday (in the DD world we have job coaches specifically for this if people need the help).   People need help cooking.  People need help eating.  People need help with all kinds of things.

And psychiatric services in the community don’t cover any of those things.  If you can’t do them, they think you’re not motivated enough so they try to “motivate” people by starving them and letting them live in their own filth, hoping that one day they’ll just magically grow abilities they never had before.  In reality that almost always makes things worse.  People have more and more trouble functioning the more chaotic and messy their environment is.  Forcing people to live that way is both patronizing and degrading.

There are generally no medications that will help a person gain these skills, nor is there any form of therapy that will help either.  That’s for the same reason those things don’t make physically disabled people or developmentally disabled people function better.  Psychiatrically disabled people aren’t some weird magical group of people where you pop in a pill  or send them off to talk therapy and magically they function better.

And it makes me so very enraged that services don’t work this way.

The agency I get services from has three wings:

Developmental services.

Children and family services.

Mental health and substance abuse services.

It’s the same fucking agency and they still won’t give purely mentally ill people the same supports they give you if you have autism or an intellectual disability.  Even if you need the same supports, even if you need them for nearly the same reasons.

If I could do one thing for this so-called ‘mental health reform’ everyone is always talking about it would be to give all psychiatrically disabled people the option to receive services in their own homes, whatever they want that home to look like, designed in the same way that the best services are designed for physically or developmentally disabled people in our own homes.  None of this “hospital without walls” NAMI bullshit that’s all about making sure people take their meds, with force if need be.  Just the ability to live with the same dignity everyone else does, with supports that are controlled by the person who gets the services (to the extent they can, and with help controlling those supports if they have trouble).

This shouldn’t be so much to ask.

The fact that I have never, ever heard of it happening anywhere, scares me.

Because this is how disability services are supposed to work.  FFS.  Seriously, FFS.  Because right now all I see in mental health services anywhere is abuse masquerading as support.  I’ve never seen the kind of support people actually need.

41 notes