Monthly Archives: April 2009

Pennsylvania+ Pennsylvania-

black and white photo of a die, the top reads 'yes' and the visible side reads 'no'+

It’s old news from last year, but was featured in a recent article from Delaware, about the potential to adopt a similar program: Pennsylvania’s autism medicaid waiver program.

Before Gov. Ed Rendell signed the waiver into law, there were no dedicated services for adults with autism in the state, said Wall-Cote, who lives in Chadds Ford. By comparison, the state spends about $185 million each year on medical-assistance programs for children with autism. The autism waiver mirrors a similar program for Pennsylvania residents with mental retardation, one that most adults with autism don’t qualify for because they aren’t mentally retarded.

Abuse and neglect in group homes was the topic of a Pittsburgh TV station. Not only is abuse and neglect alarming, so too is the fact that,

Pennsylvania allows for an inescapable conflict of interest when it comes to investigating reports of abuse in group homes. The companies that own them are permitted to investigate themselves.

Here’s the news broadcast.

And here’s the full transcript of the broadcast.

Sexual Rights, Sexual Abuse, and the Question of Consent

grainy black and white photo of a person from neck to just above the knees in their underwear with arms outstretched holding a camera. there is a black bar over the person's chest and genital area.  the word 'censored' is written in red across the center of the photoThe Boston Globe reports on the controversy over a bill prohibiting sexual photographs of the disabled and elderly. The thought was to provide greater protection from sexual abuse for people who are unable to consent; however, both the wording of the bill, and the question of where to draw the line on “mental competence” introduce civil rights-threatening ambiguities.

Part of the bill states that people over age 60 and people with disabilities who have been declared mentally incompetent cannot give consent to erotic photographs, any more than a minor can give consent. But other parts of the bill only use the term “elders and persons with a disability,” without referencing mental competence or consent.

This idea that disabled or elderly adults are unable to consent to sexual activities or have no more understanding of sex than children goes right back into the large children problem, and all of its associated stigma.

The bill seemed particularly goading to people with disabilities, who often have been stereotyped as asexual or childlike.

“This kind of bill does perpetuate that stigma . . . that once you reach a certain age, or if you have a disability you are no longer sexually attractive, no longer able to have an intimate relationship,” said Stanley Ducharme, a Boston psychologist who specializes in sexuality and disabilities. “The whole thing smacks of the idea that there’s something negative about sexual expression and seeing an erotic image of an elderly person or a disabled person.”

Just as important to question, what exactly is “mental competence?” Who gets to decide? And who gets to decide whether someone is consenting to a sexual act or not? Whether someone is under guardianship or not isn’t a reliable measure. There are plenty of adults who have legal guardians, but who are perfectly capable of consenting to sexual acts with other consenting adults.

While obviously protections are needed, banning a particular type of sexual activity for an entire segment of the population is just as obviously the wrong way to go.

How can this problem be dealt with in a way that does not assume disabled or elderly adults are large children? How can we attack the reasons for why these problems happen, rather than attacking the people they happen to? Who can speak for whom?

Excluded from Health Care Reform–And from Civil Rights

a young white woman with brown hair in profile, just head and shoulder, her other arm is visible handcuffed to the black vertical cast iron bar of the fence, she is wearing a good hoop earring91 ADAPT activists handcuffed themselves to the White House fence [all quotes from this article] yesterday in outrage over the exclusion of long term support from health care reform.

The Community Choice Act, which enables people who need long term support to get the services they need and to have the right to choose where they want to live, would finally provide a way out of institutions and nursing homes. It would give those of us who need long term support to have the same thing that every other citizen has: the choice to live in the community. It would break some of the terrible bureaucratic catch-22s that prevent people with disabilities from working, or enjoying a high quality of life, or choosing where to live. It would enable the Supreme Court ruling that inappropriate institutionalization is discrimination in violation of the ADA to be upheld.

But after meeting with the Obama administration, ADAPT says,

“They said very clearly that they would rather see people with disabilities in institutions, that they would leave them there, because there were higher priorities for this Administration,” said Bruce Darling from Rochester, “this is a civil rights issue and they need to see this as a civil rights issue. No other group of people get locked up in institutions and nursing homes just because of who they are. We are making it clear to the President that this is not acceptable.”

Darling characterized the Administration health care policy as “betrayal.”

Betrayal indeed, recall the message about equality and inclusion Obama once gave to people with disabilities. In fact, it’s even a big reason why many of us voted for him.

“My heart is broken,” said Dawn Russell, ADAPT organizer in Denver, Colorado. “Throughout the Presidential campaign, ADAPT worked hard to educate the Obama campaign. We came to believe in the Obama promise of ‘change,’ and we really believed that President Obama was the person who really would ‘free our people’ from being imprisoned in nursing homes and other institutions. Untold numbers of people have died or been abused waiting for their freedom, and we just got told we aren’t important enough and so we have to keep waiting.”

Not acceptable. Obama administration: Do better. Now.

Here’s ABC News coverage.

And here’s an action.

Photo source

Peer (ASD to ASD) Mentoring Possibilities

a young woman stands on a grassy hill in front of a bill board. the billboard has a black and white picture of a man with a t-shirt that has a blue 'm' on it in the style of superman's 's.'  text on the billboard reads 'be someone's a mentor 770-535-1050'A project “With a Little Help from My Friends” in Walla Walla (WA) trains people to become mentors to kids with disabilities, grades 6 through college. The project specializes in 5 specific disabilities, of which autism is one. Whether the mentors are themselves disabled is unclear from the article (though my unfortunate guess is that the answer is an assumed “no”). What about hooking a 6th grader on the spectrum up with a 12th grader who is also on the spectrum?

A new program and study where it is clear however, is the STEM Mentor Project which matches a disabled college student in a science, technology, engineering, or math (STEM) major with a high school student who has a similar disability and area of interest. The stated purpose of that study,

The purpose of the STEM Mentor project is to find out whether mentors who are in STEM postsecondary programs or careers will increase youth interest in and plans to go to college and work in a STEM field.

Although one does not, to my knowledge, exist currently, the idea of an all-autistic “big brothers / big sisters” type program has come up a lot both within the autistic young adult and adult community, and from other sources–for example support staff I spoke with last week who have interest in connecting autistic clients up with mentors who are also on the spectrum.

An idea whose time has come?

Monday Autism News Potpourri

a bowl of random assorted items; recognizable: rubber band ball, spiderman head, large white flower, small white flower, shells, pine cone1. For Self-Advocates at Ohio State: The Ohio State University chapter of the Autistic Self-Advocacy Network will be holding its first meeting on Thursday, April 30. This is a new group, yay!

2. For Those of Us Too Old to Be Poster Children: What is missing from the “what autism looks like” campaign? If you’ve guessed “anything even remotely resembling US!” then you’ve guessed correctly! Yes indeed, we are all “heart-warming” eternal children who need someone else to voice for us. And none of us understand sarcasm, either.

3. For Those with Interest in Female Dx: More on girls from the Guardian. I find the bit, “Lizzy’s diagnosis took 18 months. If she had thrown a chair across the classroom, she would have got the help she needed from the start,” easy to relate to–the Lizzy of the article isn’t the only person on the spectrum who didn’t get identified as being in trouble due to lack of aggressive behavior. While I can be pushed toward aggressive meltdowns, much more often I become catatonic, which was, ironically, was interpreted as “good behavior” by teachers in school (I was sitting still and shutting up after all). While I disagree very strongly with this idea that the main emotion people on the spectrum experience is fear (yikes! please, please don’t take that as fact!), I do find the notion that “being in trouble” doesn’t look exactly the same in all autistic people a critically important one for both diagnosticians and every one else to keep in mind.

4. For All You Bloggers: May 1st, yes, this Friday, is the fourth annual B.A.D.D.–Blogging Against Disabilism Day! Let’s blast the ‘net with social justice stories and work to put an end to discrimination against people with disabilities! If you haven’t already, sign up here to participate.

Support Cuts and Systems Perspectives

close up of a tangle of many different kinds and colors of wiresAt a time when the creation of jobs in the U.S. is a top priority, and indeed the goal of the economic stimulus, it seems the last thing that needs doing is to explicitly reduce jobs. And yet, that seems to be just what is happening in Massachusetts.

In a move that one director of an agency which provides a day employment program calls “penny wise and pound foolish,” Massachusetts has proposed a $7.4 million cut to funding for day employment programs.

Now regardless of whether “day employment programs” are a good solution, at least they may be a solution for some. And expanding out, there have also been severe cuts to vocational rehabilitation and other employment related services, as we all know.

What interests me most about the Massachusetts article is the notion of “penny wise and pound foolish,” as well as some analysis that starts looking outside the immediate panic response to how a change in one place–cuts to day programs–affects change in another place–the use of crisis services, impact to family, a person’s ability to live in the community and resulting expensive other types of placement, etc.

The field I study, and my main Interest since earliest memory, is the complex systems field. Quoting wikipedia’s definition here which is pretty good,

A complex system is a system composed of interconnected parts that as a whole exhibit one or more properties (behavior among the possible properties) not obvious from the properties of the individual parts.

A system is a set of parts which relate to each other in some way that can be considered a whole relative to some environment (i.e. that which is not within the system). Social systems, like those involved in economies, or, smaller, employment, or, smaller still, employment for people with disabilities, are complex. They are comprised of interconnected parts that exhibit a behavior that isn’t always obvious from examining individual bits (like funding to a particular program) in isolation. So a lot of care needs to be taken to understand the parts, the whole, and the relationships before making changes that could impact the system.

When I give presentations on systems thinking, I often joke that systems thinking will someday save the world–but it’s only half a joke really.

As policy makers look for where to make needed cuts, it’s critical that they think about everything that connects to what is being cut, what the relationships are, and question whether there will be something like a cascade effect that creates even more problems than the cut was intended to solve. Short sighted, instant gratification, fixation on isolated parts, and lack of understanding the systems perspective might even be how we got into this economic predicament in the first place.

It’s important that the people who make decisions that have effects us fully understand exactly what those effects might be–long term, big picture, and in relationship to our families, communities, state, nation, and the world–before they implement the decision.

The Back Doors to Education

black and white photo of three park benches diagonally from foreground to background; the one in the middle is in colorMainstreaming in education is good in the sense that it gives an equal opportunity at education. But equal opportunity doesn’t have to mean “exactly the same as.” The presence of an opportunity, and how that opportunity is actualized, are two different ideas.

In Tennessee, an AS student with 19 colleges courting him is having trouble getting a high school diploma because of algebra. In the UK, an AS student who has conditionally been accepted at Cambridge was denied admission to high school. And in less-exotic-to-me Portland, Oregon, I talked with support staff about how Dawn Prince-Hughes became an expert with a PhD on a GED and a series of independent studies. Either because of the rigidity of the educational system, or because of our own personal learning style not fitting well with the educational system, doing education the same way as others may be neither appropriate nor desirable.

Here are some questions that come up a lot when I talk with people about access to post secondary education:

1. Is it possible to go to college with a modified high school diploma?

2. What if general education requirements outside of Interests are too hard to manage?

3. What if being in a classroom is too hard to manage?

4. What if standardized tests are too hard to manage?

I don’t know a single “correct” answer to those questions, but I do know a lot of little possibles. I also know that the rigidity of the educational system in the U.S. is a huge barrier for non-traditional learners. But, on the hopeful side, there are also some “back doors”–ways around these barriers.

Continue reading

Robot Cookware and Beyond

a square piece of quilting, near the border there are rectangles and squares set at diamond angles, then a thick black square boarder, and in the center is a quilted robotI was recently told I had money available to me through the Fairview Housing Trust to purchase assistive technology for my home. While items like wheelchair ramps might be useful to some of my friends they aren’t really for me, so at first I was at a loss as to what to request.

Then I remembered someone telling me about newfangled toaster ovens and cooking devices that can be set to automatically turn themselves off. I don’t use the toaster oven (or stove, or any sort of Thing That Heats Up) unless someone’s around because I tend to wander off and forget I’ve turned stuff on. This, obviously, is dangerous and bad. But “smart ovens” or “smart stoves” might be just the ticket. I’m a long-time user of technology to replace “executive function” areas I’m weak in.

This got me thinking about smart houses and how a house might be souped up to improve quality of life, increase safety, and reduce stress and strain. I’m already designing a new Robo-House in my head.

But for now I’ll be researching smart ovens, and hoping the Fairview Housing Grant doesn’t get axed.

How can smarter technology in the house help you or your family live better?

New Freedom: AAC When and Where It’s Needed

a communication disc in a field under a blue skySo. I got my announcement that Proloquo2Go is now available in the iTunes store Wednesday morning. Several hours later my atlas-camera-alarm-emergency phone-sms device-Internet anywhere-notepad-schedule-calendar-and general other-half-of-my-brains iPhone had also become a shiny new AAC device. I spent the afternoon exploring, reprogramming, being excited, and developing a wish-list of features I’d like to see in a next version. I truly, truly am not trying to sell specific products here on this blog–I write about this because it’s what I use, what I have hands-on experience with in day to day life. But the topics that come up for me with the specific devices I use do, I hope, point out some concepts that are more global in nature.

And in this case, as I become ever more giddy about the new freedom I will have from the new device, the idea of advances in assistive technology meaning new freedom is not restricted to any one specific piece of technology, to any one individual person (can think even as broadly as changes in wheelchair design over the past 50 years).

I remember when the limits of my communication were defined by specific people, specific topics, and so many random factors it might as well have been star alignments. I remember too the freedom that came with starting to use alternative communication means, and having my world open, limits became defined instead by paper and pen, by portability, battery power and flat surfaces. My options opened; a new world opened. Limits redefined.

Now as technology becomes even better suited to match my specific needs, my limits are being redefined again–increased portability, hours and hours of battery life, the ability to communicate while moving, walking, without a screen between me and my conversation partners–and things I haven’t discovered yet.

I grew up before computers even existed in people’s homes.

Now a computer I can hold in one hand and operate with a single finger gives me the freedom to communicate with others no matter where I am, no matter when I need it.

And that’s just… well, neat!

There are a lot of AAC solutions out there. Even though a solution might be totally different from mine for others, finding a good match between a particular AAC solution and an individual’s personality, abilities, and usage needs can be a big step in redefining individual limits.