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Amelia Rivera Update

Children’s Hospital of Philadelphia has apologized to Amelia Rivera’s family for how discussionsamelia rivera about a potential kidney transplant for the 3-year-old were conducted.

http://www.disabilityscoop.com/2012/02/16/hospital-sorry/15003/

Children’s Hospital of Philadelphia Denies that Amelia Rivera Was Declared Ineligible for Transplant Based on Her Intellectual Disability

Amelia has Wolf-Hirschhorn Syndrome, a rare genetic disorder characterized by severe physical health issues and intellectual disability.  At a meeting with a surgeon and a social worker at the Children’s Hospital of Philadelphia, parents Chrissy and Joe Rivera were told that Amelia would not be eligible for a life-prolonging kidney transplant because she is “mentally retarded”.

Chrissy blogged about the incident in a Wolf-Hirchhorn Syndrome internet support community, attracting media attention and sparking the creation of an online petition to get Children’s Hospital of Philadelphia to reconsider its position.

The hospital has agreed to reevaluate its decision regarding Amelia’s eligibility for transplant, and continues to deny that it discriminates on the basis of intellectual disability.

For the full story and commentary on the Rivera case, please read: http://www.girlwiththecane.com/amelia-rivera/

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What Now, Rosie O’Donnell?

So, I’ve been keeping an eye on reaction to Rosie O’Donnell’s interview with Chelsea Handler overRosie O'Donnell the last couple of days.

Disappointing, to Say the Least. Rosie O’Donnell’s Taken a Beating Over This.

People have been saying some very nasty things about Rosie O’Donnell (and to her, if her Twitter feed is anything to go by). I was shocked by the venom of some of the comments that I heard had appeared on Matt Roloff’s (of The Learning Channel’s “Little People, Big World”) Facebook page, but when I investigated tonight it looked as if those comments had been removed. The remaining ones, calling Rosie O’Donnell things like “loudmouth” and “ignorant” and accusing her of planning the whole piece as a way to get the Roloffs on her show (in response to call from Matt Roloff for compassionately helping Rosie O’Donnell to move past her anxieties about little people) were difficult enough to read.

I don’t think that Rosie O’Donnell is blameless here. I think that she didn’t choose the most sensitive way to express what she was trying to say, and I understand why people are angry. But, as a person who is “different”, I have always said that I’d rather that people express the ways in which my disabilities make them anxious, if this is an issue, and ask me whatever questions that they need to in order to alleviate their anxiety. I’m not going to fault her for doing that, especially when it obviously does make her feel ashamed that she feels that way.

Rosie O’Donnell…Meet Me at Camera Three

I’ve been reading your Twitter feed and see how frustrated you’re getting at apologizing over and over and not being sure what else you can do. I think, if I was a little person, what I’d want to hear now is what you plan to do now that you’ve admitted to the world that you suffer from this anxiety.

I think that you can understand this. You only have to imagine a conversation between two people where one described how she’d grown up in a house where she was taught that same-sex attraction was something to be fears and that was lesbians made her anxious, even though it made her ashamed to feel that way; how she couldn’t understand how lesbians had sex; how she couldn’t wrap her mind around the idea of two women being attracted to each other, couldn’t reconcile that with her conceptions of healthy relationships…and I’m sure you’d not only wholeheartedly suggest that if he or she really want to get over this anxiety, there are resources that he or she can access to have questions answered, and that she should try to find some lesbians in loving relationships with whom she can spend some time and get to know, so that she can see that they’re not that much different than everyone else: people with jobs and children and good times and bad times that contribute to their communities and live in loving relationships…just with other women.

And I’m sure that you’d know to suggest that if the anxiety has reached the stage where it’s very disruptive to her life, maybe professional help is warranted. Phobia treatments are very effective and actually work quite quickly when the individual is really committed to them.

Of course, you don’t owe anyone details about what you plan to do now, if anything. But you keep asking on your Twitter feed, “I’ve apologized…what more can I do?” Maybe sharing that you plan to do something will heal some wounds.

For the Rest of Us

Enough of the attacking rhetoric and the name-calling. You don’t create a more inclusive world by calling *anyone* names, no matter how intolerant you think they’re being. It really just brings you down to the level at which that you believe they are.

Don’t make me say it again.

Matt Roloff’s Facebook Page:  http://www.facebook.com/RealMattRoloff

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Supreme Court Ruling on Testimony from People with Intellectual Disabilities…It’s About Time!

A Supreme Court ruling in Canada is going to change the experience of people with intellectual disabilities in Canadian courts.

The ruling was made as the Supreme Court gave a woman with an intellectual disability a new trial after her testimony about an alleged sexual assault was dismissed.

http://www.canada.com/Mentally+disabled+victim+alleged+assault+gets+trial/6134861/story.html

Supreme Court Ruling Offers More Protection to People with Intellectual Disabilities

The Supreme Court ruling is extremely important.  Up until now, the Canada Evidence Act has put restrictions on how the testimony of people with intellectual disabilities can be used in court. Judges had the right to assess competence of a person with an intellectual disability and rule Supreme Court rulingwhether or not his or her testimony was admissible. This goes beyond the standard required for anyone else to testify: that they be able to communicate their story clearly, and that they promise to tell the truth.

I have never supported an individual to testify in court before, but I have supported individuals to make reports to the police. We talked beforehand about how it was important to be very honest, to tell the story exactly how they remembered it happening, and to answer the officer’s questions as best they could. I can tell you from working with many, many people with intellectual disabilities that they know the difference between “telling the truth” and “telling a lie”, and that, like most of us, most of them feel quite strongly that telling a lie is wrong.

So I found myself nodding when I read Chief Justice Beverly McLachlin explain that when an individual with an intellectual disability testifies, the promise to tell the truth should be enough. They should not have to demonstrate understanding of the moral obligation that the promise confers upon them (i.e., explain in concrete terms what taking an oath morally obligates them to do) – they just have to take the oath and be able to tell their story.

Of course, not all people with intellectual disabilities will be able to testify. Some will not understand that they have to tell the truth. Some may have a mental condition as well as an intellectual disability that doesn’t allow them to distinguish fantasy from reality. But the stereotype that all people with intellectual disabilities cannot understand the difference between a truth and a lie and therefore shouldn’t testify is no longer an issue. Now an individual is *competent* to testify under the law until proven otherwise, instead of *incompetent* until proven otherwise.

This makes all the difference in the world. It gives people like the woman  who got a new trial, who was trying to take her sexual abuser to court, a lot more protection under the law.

Legitimate Concerns About the Supreme Court Ruling?

Too much, the dissenting Justices said of the Supreme Court ruling, holding fast to the idea that if you can’t explain why it’s important to keep a promise to tell the truth, the power of that promise becomes so diluted that it really offers the accused no protection at all.

There were three dissenting judges out of the nine who voted. They were also concerned, according to one article that I read, that when asked questions about her daily life and routine, the woman who got a new trial answered “I don’t know.”

I don’t think that this is necessarily a sign that she’s not fit to testify, or doesn’t understand the gravity of testifying in court. That could be simple nerves, and it would have been unfortunate to have voted down this Supreme Court ruling because the person had nerves.

Support Measures for the Supreme Court Ruling

Now that the ruling has passed, provincial governments may want to consider some sort of support process in place somewhere in their social services infrastructure to assist people with disabilities who do have to testify to become more comfortable with the courtroom and its processes before the actual day:

  • Provide someone to be a sort of case-manager, to assist the person’s lawyer to get them prepared for court and to be a person to whom the person can have easy access in times of anxiety about testifying. This person could help with the points below.
  • Go with the person on a visit to the courtroom to view a portion of a trial. Familiarize the person with courtroom procedures. Watch a person testify.
  • Arrange to have the person talk to a person who has testified in court, to answer their questions.

It’s important that the legal and judicial system take all possible steps to successfully implement this new Supreme Court ruling. As Carol Goar said in her “Toronto Star” column, this sort of ruling should have come into place twenty years ago when the Charter of Rights and Freedoms was enacted. We owe it to the people with intellectual disabilities who weren’t protected before the Supreme Court ruling for all that time to make sure that people with intellectual disabilities are protected now.

For more on this story:

http://www.thestar.com/opinion/editorialopinion/article/1131454–supreme-court-ruling-gives-canadians-with-mental-disabilities-full-equality-in-court

http://www.theglobeandmail.com/news/national/top-court-orders-new-trial-in-sex-attack-on-developmentally-challenged-woman/article2334451/

 

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Rosie O’Donnell Speaks Out on Little People

Well, readers, what do we think of this bit of sharing from famous people about their feelingslittle people about little people?

http://youtu.be/8W9j-ISxrzc

I think that most people are familiar with Rosie O’Donnell. Chelsea Handler is a late-night talk show host.

Deep Sigh…Sometimes People Just Shouldn’t Even *Start* Talking

I understand that, like Rosie, people are sometimes uncomfortable around people who look “different”, for whatever reason, and they can’t really explain why. I think it takes a lot of guts to own up to it, and to talk about it, especially when you’re as public a figure as she is. However.

I expect her, as someone who’s interviewed as many people as she has and who has lived with a lot of social stigma herself for being “different” in the American Hollywood scene (overweight, and a lesbian who has had adopted children) to approach a discussion about why she has conflicting feelings about little people with more sensitivity and less of the “they’re freaky and I don’t understand them!” vibe that pervaded the interview, especially toward the end. Her attitudes seem more based on ignorance of little people and their physiology than the initial gut emotional reaction that she identifies. And that’s simply not acceptable from a woman who made it her life to get to know people and their stories for so long.

Someone Please Keep Chelsea Handler Away From Little People

And Chelsea Handler is just downright ignorant. Sentences like “It’s like having a kid” and “There’s not a lot of job opportunities for these kinds of people…they need help.” about her co-host (a little person), and calling another little person in her office a “little nugget” tells me everything that I need to know about her.

A fitting end to a weekend where it wasn’t even worth it to get out of bed.

Thank you to Sandra Rhodda at @accesstourismnz for making me aware of this.

And thank you to Chris Errera, for this (much more diplomatic than mine) response that I found when I went to looking for a link to Rosie’s video.  Must-watch.  He gets it, and puts my cynicism to shame.

http://www.youtube.com/watch?v=bt166pi1RqM&feature=related

 

 

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Me and My Cane

I Love My Cane

We are an excellent team. I’ve never seen footage of myself walking with my cane, but I feel like I move smoothly and freely. I don’t even notice my cane anymore as I walk. It just feels like an extension of my arm, helping to make walking a bit easiercane for me. It feels to me like a beautiful friendship.

If my cane were a person, however, you could make an argument that I’m not much of a friend.

Outdoors Friends

When I was in outpatient rehabilitation from my stroke and getting mobile enough to spend more of my time out of my wheelchair, I used my cane all the time, inside and outside. Now I don’t use a wheelchair at all and I only use my cane when I’m outside, for added speed and balance. If I’m going to be in a building for any length of time, I hook it over a chair or set it against something, and don’t think it about it until I’m ready to go outside again.

Friends don’t just associate with friends when they need them for something and then set them aside until the next they need something. My poor cane. Despite the fact that it gets me where I’m going so much more easily when I’m outside, that it does increase my balance and speed, and that it’s stopped me from falling more than a few times, it basically gets ignored when I’m indoors (except when my father plays with it, which just annoys me). In my last job, one of the individuals that I supported always took note of where I put it down when I came into the office, because he knew that I’d forget where I put it when I went to leave. As I left, he’d bring it to me and I’d thank him, embarrassed. I’ve left my cane hooked on grocery carts, on chairs in food courts,  on clothing racks in stores, and on windowsills, ledges, counters or tables in just about any other building that you can imagine. All with no apology.

If my cane were a person, maybe someone would say to it, “It doesn’t sound like Sarah is much of a friend. Maybe you should just cut her loose.”

Growing Apart?

But if my cane was a person, I think that it would understand that me forgetting it is really a good thing. If I can walk away from it more and more easily, that means that I’m needing less and less. That means that after over a decade of being a stroke survivor, I’m still getting better.  And a friend would celebrate that for me, plus look forward to the prospect of eventually totally retiring.

It’s not like I’ll ever forget how fortunate I am to live in a country where my mobility aid was affordable and easy to get. It’s not like I’ll ever forget a dozen years of walking with the extension of my arm.

My friend has offered to dress up my cane a bit – put some colour over that generic grey and silver that I’ve left untouched for so long. Perhaps it’s something to consider. Something nice to do for my friend.

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Physical Accessibility: Please, No Half-Assed Efforts

This particular rant is about physical accessibility, and inspired by a business building with which I have contact on a regular basis. It has a wheelchair ramp in addition to stairs leading up to its entrance. The problem is that in the winter, the wheelchair ramp is regularly covered with ice and snow. Anyone who’s tried to wheel themselves up a snow- or ice-covered ramp in a manual chair, or who has tried to push someone up a snow- or ice-covered ramp in a manual chair knows that it’s unsafe at best and impossible and worst.

Major Physical Accessibility Problem

This is a long-standing problem. I’ve complained to staff at the business twice this winter. My family has complained in past winters. It’s not just a safety problem for people using wheelchairs, but for anyone else that might use that ramp out of necessity or convenience: parents pushing a stroller, people using walkers, canes, or crutches, and people who just feel a little unsteady on their feet and would like to avoid stairs.physical accessibility

My question is: If a business doesn’t have the resources or the inclination to keep a wheelchair ramp usable for the public, why put it there in the first place?  If the business in question was really serious about easy physical accessibility, and not making customers go through a busy parking lot that’s often as icy as the ramp to get to the back entrance to the building, the ramp would be cleared off. Obviously increasing physical accessibility is not the reason the ramp is there.

I realize that people don’t think about matters of physical accessibility until they really need to. I certainly didn’t. Here’s a hint to those who haven’t thought about them: You can’t half-ass these things. It’s not a good use of the time and money it takes to increase physical accessibility in a  building, and it simply doesn’t send a good message to the rest of the community. It says that you don’t care whether or not people with disabilities or other people that benefit from universal design can access your place of business. It says that you don’t really care whether that group spends any money in your store. As a person with disabilities, when I’ve not been able to get into a business because of my disabilities, I’ve said to myself (and to others), “They obviously don’t want my money…I’ll go to the businesses that do.”

I don’t feel that this is an over-reaction. When it comes to making communities places in which people with disabilities can have full access, they deserve more than half-assed efforts.

 

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“Inside His Mind” – A Must-Read about Dual Diagnosis

I came across an incredible blog post over the weekend about a young man with a dual diagnosis.

http://www.li-kids.com/2012/02/01/inside-his-mind-an-interview-with-r/

I’ve never read this blog before, but the post in question is a mother’s interview with her teenagedual diagnosis son   (I’m assuming that ‘he’s a teenager; his age is never given, but one of the tags is “teenager” and the Twitter tweet that led me to the article said he’s a teenager) who has Asperger’s syndrome, bi-polar disorder and obsessive-compulsive disorder. This is called a dual diagnosis – developmental disability and mental health diagnosis. It’s a fascinating read, and a couple of things about it really struck me.

1) R’s Level of Insight into His Dual Diagnosis and His Disabilities

When I worked with teens with intellectual disabilities who could understand that they had a disability, we had a lot of conversations about what “disability” was. Some of them didn’t realize that they had one. Some knew that they had one, but simply didn’t consider themselves people with a disability. Some didn’t want to be considered one of “those people” out of fear of being teased, or of being associated with groups of people with whom they felt they had nothing in common.

I tried to get the message across that if you understand what your disability is and how it affects you, you know how to ask for what you need – from doctors, from formal supports, from informal supports, even from potential employers. I struggled with depression and obsessive compulsive disorder in high school and through my twenties, and I know that I could not have explained nearly as clearly as R how these things affected me.

R’s family needs to look at this ability to reflect on his dual diagnosis and to explain what it’s like to be “in his mind” as a strength that he can utilize.

2) Which Disability R Perceives As Giving Him The Most Difficulty

Some of the difficulties that R experiences likely come from his Asperger’s diagnosis. The trouble picking up on social cues and the social awkwardness are symptoms of Asperger’s (they can be symptoms of other things, too, but if he’s been diagnosed with Asperger’s, those things likely are likely part of that disorder for him.) The fixation on video games and technology may also be a part of his Asperger’s, even though he seems to identify it as something separate.

Based on this interview, it seems to be the bipolar part of R’s dual diagnosis that causes him the most distress. It makes me think about the controversy over the proposed changes to the diagnostic criteria for autism for the DSM-V, and wonder:

  • How many of the R’s medications are treating Asperger’s-realated issues?
  • Are the new psychiatrist and psychologist he’ll be seeing supporting him for the bipolar? The Asperger’s? Both?
  •  What are his doctors’ take on the video games as an addiction (as opposed to another manifestation of Asperger’s)?

3) A Downside to Canadian Medicare

I’ve never said that there weren’t any.

In emergency situations, Canadian Medicare has always served me well, as I’ve blogged on before. But when I read that R will be seeing a psychiatrist…I thought, “Wow, just like that?”

In Ontario, it’s very difficult to see a psychiatrist or a psychologist anymore if it’s not an emergency situation.  It wasn’t always like that. But it is now. It’s very frustrating when you’re supporting individuals who need a psychiatrist and it’s so difficult to get them access to one.

I realize that for people without insurance in the United States, this sort of treatment is very expensive. But with non-emergency psychiatric care so hard to come by in Ontario…it does make me wish sometimes that it was as easy as being able to find a psychiatrist and pay for services, just like that.

I guess there are no easy answers when it comes to health care.

Thank You, Ashtyn Evans and R

Ashtyn printed all of R’s responses about his dual diagnosis unedited in her blog post, and plans to blog about her feelings later.

I’m looking forward to reading her thoughts about R’s dual diagnosis.

 

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Why I Write About Welfare Benefit Reform in Britain

Welfare Benefit Reform: Tuesday

Well, it seems clear that Britain’s movement to fight welfare benefit reform and deep cuts to disability income supports suffered a major blow on Tuesday.

http://diaryofabenefitscrounger.blogspot.com/2012/02/warning-toxic-government.html?spref=tw

I don’t know all the particulars. I still don’t totally understand it all. I know that some legislation (which already went though at one level of government) to mitigate effects of the cuts on the children with disabilities was struck down at another.  Classy. I’ve been reading on Twitter about some awful language from the Conservative Members of Parliament about people with disabilities: “the great unwashed”, “retards”, people that think disability is a “lifestyle choice” and so forth.

Stay Strong, Britain…

I still don’t understand all  of what’s gone on here and what continues to go on. What’s struck me the most about the whole thing, and its plainly visible in the post of Sue Marsh’s to which I’ve posted (and the comments on it), is the desperation. Sue put together the Spartacus Report to try and show the British government the impact of the proposed welfare benefit reform, and has put countless hours into coordinating people and efforts even while hospitalized. I’ve read a lot of her stuff lately, and I don’t doubt her when she says that she’s not going to give up – but I’ve also never heard her sound so desperate.

Read this too from the woman who has been working with Sue. Desperate.

http://benefitscroungingscum.blogspot.com/2012/02/death-of-decency-wrb.html

Why British Welfare Benefit Reform?

I’ve been asked why I’ve been writing on the welfare benefit reform situation in Britain. A lot of my Twitter followers (and the people I follow) are involved with the disability community in  Britain, so I see a lot about it. There seems to be a perception that people using Britain’s income supports are all “scroungers”, and the government seems determined to deal with the inevitable few who abuse the system by punishing everybody who uses it.

And you don’t have to understand all of it to appreciate that people are very, very frightened of losing support that allows them to live and being told to go out and find jobs when they legitimately can’t work.  As Sue says in her post, “Yes, even Blair backed down from sending cancer patients to the jobcentre.”  Apparently this government isn’t prepared to.

I write about what’s happening in Britain, to the best extent that I can, because I hear the “they’re all scroungers” attitude from politicians in Canada and the United States, too. It has reached a fever pitch recently, particularly in the United States with the election approaching.   I’ve heard Republicans talk about cutting food stamp programs, refer to people on social support programswelfare benefit reform as “raccoons” who will  just keep coming back as long as you feed them, and suggest that people with disabilities could have their needs met through the generosity of churches and community groups instead of  having them rely on income assistance.

In Ontario, monthly ODSP support still keeps individuals below the poverty line. And yet the focus on the very small amount of people who manage to abuse the system to get as much money out of it as they can, rather than the vast majority who can barely afford to both pay rent and eat each month.  I also remember, several years back now, when Ontario Premier Mike Harris declared that people make a choice to be homeless, which always leaps to mind for me when I read stuff like, “Disability is a lifestyle choice”.

What’s happening in Britain could easily happen in Canada or the United States, too. And yet I’ve not heard or seen one news story about it here.

I write about what’s happening in Britain with welfare benefit reform because it’s a current event that potentially affects us all. Disability news needs makes to make the world news too – let’s do what we can to make sure it does!

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Proposed Changes to Diagnostic Criteria for Autism and “The Big Bang Theory”

So…I Was Reading About the Proposed Changes to the Diagnostic Criteria for Autism in the DSM-V

I thought that I would be steadfastly opposed to the changes. But I was surprised to find myself, diagnostic criteria for autismafter reading some articles and some parent blogs, unsure about where I stand on them.

It’s not that I don’t believe that the conditions that are most likely to be affected by the the diagnostic criteria for autism (Asperger’s Syndrome and Pervasive Developmental Disorder Not Otherwise Specified) don’t exist. It’s not that I don’t share concerns that the proposed DSM-V diagnostic criteria for autism might narrow the definition of autism so that people who would have been diagnosed with Asperger’s or P.D.D.N.O.S. might not be any longer, and therefore be denied needed supports and services.

I just wonder if we’ve built Asperger’s especially up in our minds (at least in some cases) as something that requires more supports and services than it actually does. If so, the changes to the diagnostic criteria for autism might actually move us back to a more balanced view of autism and of people.

I think what really brought this out for me was a quote from a mother of a woman with Asperger’s saying that she was afraid that her daughter wouldn’t get into supportive housing if she lost her diagnosis under the new diagnostic criteria criteria for autism, and another quote from Lori Shery, President of the Asperger’s Education Network:

“If clinicians say, ‘These kids don’t fit the criteria for an autism spectrum diagnosis,’ they are not going to get the supports and services they need, and they’re going to experience failure.”

“God forbid they experience failure,” I thought.

Lessons from “Sheldon”

Sheldon Cooper, one of the main characters on the CBS hit “The Big Bang Theory”, is seen in different ways by different people. One group (which includes my father) sees the character’s tendency to take everything literally, his apparent lack of empathy and inability to understand social cues and rituals until they’re explained to him, his focus on his own set of rituals, and his difficulty with dealing with changes in his routine, as delightfully “quirky.”

My friends in social services and I see him as a wonderful study in Asperger’s syndrome, although it’s never been mentioned in the show.  It doesn’t matter. Sheldon has his own group of (non-disabled) peers, including a roommate, a girlfriend, and friends at work. His “quirks” sometimes drive them crazy, but they’ve developed ways of dealing with them.

Sheldon doesn’t always thrive in the “real world”, by any means.  His difficulties relating to people and understanding social conventions cause him setbacks, and he doesn’t always understand what has happened and why. But he functions in his job and his relationships, without a diagnosis and without any formal supports.

I’m really uncomfortable with the idea that social services’ role is to protect people from failure, or surround them with so much support that they can’t be “quirky” anymore.  Because people with disabilities need to learn how to deal with failure, just like the rest of us…and part of making society truly inclusive is learning to deal with other peoples’ “quirks”, whether there’s a diagnosis attached to them or not.

Asking Tough Questions…

To be clear: I’m not denying that Asperger’s Syndrome and P.D.D.N.O.S. may present challenges that require support. The proposed changes to diagnostic criteria for autism for the DSM-V need to take into account that some vital supports, including respite, require a diagnosis, and researchers need to question whether their plan to use one set of criteria to diagnose all the autism spectrum disorders actually captures the full range of the spectrum. For our part, as parents, educators, advocates, and agency workers, we need to ask ourselves some questions before we start to panic about the implications of the new diagnostic criteria for autism:

  • How are our attitudes toward  and perceptions of autism and disability affecting our reactions to this news?  Is our thinking accurate in all areas?
  • Regardless of whether the new diagnostic criteria for autism goes through, how do we teach society to see the person before the diagnosis, and realize that there are people out there who (for a variety of reasons) have trouble in social situations?  Sometimes that’s just who people are…

I need to do some more reading on the proposed changes to diagnostic criteria for autism. I’d like to hear other peoples’ thoughts.  Click these links to learn more about the proposed changes and their potential implications:

http://www.psychologytoday.com/blog/child-development-central/201201/understanding-the-dsm-5-autism-criteria

http://www.nytimes.com/2012/01/20/health/research/new-autism-definition-would-exclude-many-study-suggests.html?_r=2&pagewanted=all

And more on “The Big Bang Theory”: http://www.cbs.com/shows/big_bang_theory/

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Time to Rethink Sheltered Workshops?

A class action suit was filed on January 25th in Portland, Oregon on behalf of the Cerebral Palsy sheltered workshopsAssociation (Oregon chapter) and eight individuals with intellectual disabilities. The first of its kind in any state, the suit claims that sheltered workshops as they are run now in Oregon are in violation of the Americans with Disabilities Act and the Rehabilitations Act.

http://www.chicagotribune.com/news/sns-rt-us-oregon-disabled-lawsuittre80p07g-20120125,0,7475636.story

Very interesting. I hope they win, and that similar suits are filed in other states. It wouldn’t hurt to see some more action in Canada on this either, although there’s already been significant action in Canada to move away from the sheltered workshop model.

I’ve Heard the Arguments for Keeping Sheltered Workshops

  • Parents and caregivers like them because they give people with intellectual disabilities a place to go for the day.
  • People who have been in sheltered workshops for a long time often like them because it is a place to go during the day where they can be with their peers, do some work and make a bit of money.
  • It’s an easy way to give people with intellectual disabilities some employment opportunities.

Those Arguments for Keeping Sheltered Workshops Don’t Work for Me

  • People with intellectual disabilities deserve more than a “place to go for the day”. Agencies should not be providing baby-sitting services or warehousing facilities. As the article points out, that’s going back to the days of institutions.
  • If a person with disabilities wants to meet up with other friends who have disabilities, why come to a sheltered workshop to do it? Why not go for lunch or coffee, or visit someone at their home, like people without disabilities do?
  • Why do a job in a sheltered workshop setting and not receive adequate compensation when a person with an intellectual disability can do the same job out in a community setting, get paid for the work, make new friends and have new experiences? Isn’t money better spent on providing the support people need to obtain those kinds of employment opportunities?

Oregon Service Providers, Meet Me at Camera Three…

I  know how you guys thought this was a best practice, but you’ve got to look at how you’re coming across, and ask yourself if sheltered workshops are really the best way to meet the needs of the people you support.

Service providers are the ones supposed to be setting the good example for everyone else, by promoting the importance creation of opportunities for them to participate with dignity, equality, and full inclusion. What kind of message does it send to your communities when you, as service providers, keep them sequestered in buildings, without opportunity for interaction with the community, paying them less than minimum wage for jobs?  What kind of message does it send to the people you support?

Think about it.

 

 

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