Tag Archives | intellectual disability

Cry Me a River, Katrina Percy – Justice for LB!

lbI wrote this piece for the blog 107daysofaction.wordpress.com recently. I asked for permission to reprint it here to help raise awareness on this side of the Atlantic about the story. If you’d like to get involved with Justice for LB and 107 Days of Action, please click here


I’ve recently been made aware of the story of the death of a young autistic man in the UK that’s not getting any press that I’m aware of in the U.S. or Canada. I’d like to tell you Connor Sparrowhawk’s story.

Connor Sparrowhawk, known as “Laughing Boy” or “LB” to his friends and family, was autistic and, from what I can gather, intellectually disabled (it’s difficult to tell when going by British sources sometimes, as they tend to refer to what North Americans call “intellectual disabilities” as “learning disabilities”).  He also had epilepsy. In an interview with BBC radio, LB’s mother, Sara Siobhan, talks about how when her son turned 18, his normally happy disposition changed:

“When he turned 18 in November, his behaviour sort of…he become very unhappy and anxious. And over the space of those 5 or 6 months, he became increasingly sot of unpredictable in his actions and very unlike himself, and he became very difficult for us to manage. We couldn’t get any help to look after him in school, really, and we were struggling to keep him in school.”

LB punched a teacher’s assistant and became increasingly unsettled. The family felt that they had no choice but to send him to Slade House, a small treatment and assessment facility (seven beds) run by Southern Health NHS Foundation trust.

Sara talked to the BBC about her hopes that the staff at Slade House would be able to figure out what was causing the changes in their son, and that they’d be provided with strategies to manage his anxiety and unhappiness. She feels that Slade House did very little to help either way. But if only that had been the worst of it.

LB was in Slade House for 107 days before he died on July 4, 2013. Sara got the phone call at work from a staff member when LB was on the way to to the hospital, she told the BBC. He’d been having a bath, and been found unconscious. Sara was told when she reached the hospital that doctors weren’t able to revive him.

The portmortem showed that LB had drowned, likely as a result of having a seizure, and was originally declared a death by natural causes by Southern Health NHS trust. However, an independent report found reasons to conclude otherwise, as indicated in this summary of the report’s findings on bindmans.com:

The report, completed by the independent organization Verita, investigated LB’s death and found the following:

  1. That LB’s death was preventable
  2. That there were significant failings in his care and treatment
  3. That the failure of staff to respond to and appropriately risk assess LB’’s epilepsy led to a series of poor decisions around his care
  4. That the level of observations in place at bath time was unsafe and failed to safeguard LB
  5. That if a safe observation process had been put in place and LB had been appropriately supervised in the bath, he would not have died on 4 July 2013
  6. That the STATT unit lacked effective clinical leadership
  7. That there had been no comprehensive care plan in place for the management of LB’s epilepsy and his epilepsy was not considered as part of his risk assessment, in breach of NICE epilepsy guidance

The report follows another, highly critical CQC inspection report published in December 2013 in which the STATT unit failed on all 10 essential standards of quality and safety. Since that inspection report, the unit has been closed to new admissions.

Wow. Doesn’t seem to me like there’s much for the NHS to do but to try to determine what adequate compensation is in this situation (as if there is such a thing, when the death a loved one is involved), determine who was responsible and to what extent, “clean house” of those who were responsible, and commit to reviewing all the policies and procedures that may have contributed to LB’s death…and actually do so, of course.

But these things rarely happen that simply.

Justice for LB!

There’s not enough space today to get into the ways that justice has been put off for LB and his family, although Sara documents it all very well herself in her blog. Even a small facility like Slade House can be just as destructive as the larger warehouse-like institutions that are falling out of favour. It’s all a matter of attitudes and workplace culture. And like most stories involving professional misconduct in an institutional setting, this one gets uglier the more you find out about it.

I’d like to single out one person in particular.

Katrina Percy, chief executive of the Southern Health NHS Trust, doesn’t see why she should resign over this. After all, she’s apologized. She laments the lack of a “culture where people are able to be open when things don’t go as well as they possibly could.”

Cry me a river, Katrina Percy. That might go over if, after careful preparation and planning, LB had tried to go somewhere independently and gotten on the wrong bus to come home (he apparently loved buses). It doesn’t cut it even remotely when a young man with with multiple disabilities and epilepsy dies in the bathtub after a seizure because a medical unit (which turned out to be unsafe for patients anyway) for which you are ultimately responsible left huge gaps in both his care plan and its policies around observation during bath-time. And you don’t get to slam the family with vague comments about “people” not being “open” because you don’t want to take responsibility for this (or for the other two Southern Health facilities subsequently found to have safety failings after Slade House was investigated).

But then, as Chris Hatton has observed, all’s really not been well at Southern Health for the last while, has it? Quite sketchy indeed, Katrina Percy.

It never should have been acceptable for anything like this to happen, but isn’t the era where families couldn’t trust institutional care to meet the basic safety needs of their loved ones supposed to be over? Aren’t we supposed to know better, and act out of a ethos that demands we treat vulnerable people with dignity, and compassionate, responsible, reliable care?

I’m thinking about all the places that I’ve covered in this blog where people got hurt or died because disabled people were considered expendable and just given the absolute minimum of care. The abuses at Huronia Regional Health Centre in Ontario, Canada, happened a long time ago…Willowbrook State School in Long Island been closed for decades…but the New York State group home scandal broke soon after I started this blog in 2011, and the men profiled in the New York Times’ recent “The ‘Boys’ in the Bunkhouse” piece were only removed in 2009 from a horribly abuse group home/sheltered workshop situation that went on for decades.

This must stop.

The next time someone tells you that disabled people aren’t at risk in our society, ask them what they think it would feel like to have a seizure in bathtub full of water and not be able to call out for help.

I know that it’s something that I don’t want to think about.


107 Days of Action added this update when they published this piece on April 24, 2014:

Sarah’s thoughts have become even more topical in light of Katrina Percy’s ‘performance’ at the Oxfordshire Learning Disability Partnership Board. See Gail’s brilliant blog posts on this meeting Dinosaurs and Elephants in the Room and How things could have been…and the float that sank.

Then yesterday KP faced more media attention after yet another critical report and a warning notice from CQC, and Monitor announcing they are taking enforcement action against Southern Health. You can read Sara’s latest post, Love tennis in health (and social care) towers, for her thoughts on this latest development.

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The Downside of Assumptions

Disability advocate Dave Hingsburger wrote a great post the other day on the assumptions that people make when you’re disabled assumptions(which I’ve blogged about before). He talked about how, when he was watching a St. Patrick’s Day Parade in Toronto, sitting on the sidewalk in his wheelchair, the people on the floats singled him out to waved at the same way they did the kids on the sidewalk.  Now, of course, correlation does not imply causality, but Dave Hingsburger has worked with disabled people in communities a long time (as have I) and I agree with his assessment of what went on: the people on his floats made an assumption that his physical disability also meant the presence of an intellectual disability, and started treating him like a child based on that assumption. I’ve seen it happen it before.

Hell, I’ve had it happen to me. At a conference of service providers for intellectually disabled people, actually.

Assumptions: Story Time

I attended the conference just a couple of years after my stroke. It was an honour to be asked to go. After a busy day of workshops, I was very tired and looking forward to relaxing in my room in sweat pants and a tee shirt for the evening.

Before I got settled in, I went to the vending machines to get a Diet Coke, and then I realized something frightening: while I had a room key, I couldn’t remember my room number (my short-term memory was never great to begin with, and the stroke really did a number on it for the first couple of years). I knew approximately what area of the floor I was on. Feeling very foolish, I started knocking on doors, looking for the woman with whom I was rooming to answer the door.

I only had to knock on two doors before I found my room. But the combination of the cane, the sweat pants, and the story about not remembering where my room was definitely (I believe) had one woman making the assumption that I was a “client”, perhaps one of the self-advocates there for the conference, as opposed to staff, because her tone changed dramatically after I explained why I was knocking on her door. She started to talk to me like I was a child.

Not that there’s anything wrong with being mistaken for a person that I support. But I found myself thinking, once I realized what was (likely) going on, “Do we really talk to them like that? Do *I* talk to them like that? How insulting.”

Treating Intellectually Disabled Adults Like Children

I think that there are two issues that need awareness here:

  1. There is a tendency (and I’ve observed this happening to other physically disabled people as well) to assume that if a person is physically disabled, they’re also intellectually disabled. While there’s nothing implicitly wrong with being mistaken for an intellectually disabled person, this tends to get annoying because….
  2. People tend to treat intellectually people like they’re children. They speak to them like they’re toddlers, they talk “around” them instead of to them, and tend to ask to ask others questions about them (“What would he like to eat?”)

The second tendency is dangerous because it reflects a belief about intellectually disabled people that’s potentially very dangerous. If someone talks about an adult like they’re a child, it’s because there’s something in them that believes that the adult in question is a child – and, depending on the relationship between the two people and what sorts of life circumstances are at play, that creates a power differential in which all sorts of abuse can thrive, even if it’s unintentional.

But, Even More Fundamentally

We shouldn’t be treating adults – any adults – like they’re children.

Disabled adults have adult rights and adult responsibilities – they deserve the courtesy of being spoken to and treated like adults – whether they’re physically disabled, intellectually disabled, or both, or whether you’re just not sure.

There’s no need to make any assumptions, really. The truth that all people deserve respect isn’t an assumption.

Dave’s post: http://www.davehingsburger.blogspot.co.uk/

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Thoughts on Mitt Romney’s RNC speech

Must blog about Mitt Romney’s RNC speech…must blog about Mitt Romney’s RNC speech.Mitt Romney's RNC speech

I’ve been trying to do this since Friday morning.  Damn Mitt Romney’s RNC speech…it’s given me a nice case of writer’s block.

I know you’re probably all sick to death of hearing about Mitt Romney’s RNC speech, but indulge me a bit. Regular readers will know that I’m an American politics junkie, despite my Canadian citizenship, and I’ve been very restrained about writing about Election 2012 for quite some time.

I watched most of the evening coverage of the Republican National Convention, last week, despite some moments during the speeches that felt like they were causing me physical pain. Mitt Romney’s RNC speech actually had only a few fleeting seconds where I felt that way, which surprised me. Actually, Thursday night was relatively pain-free. I admit that I was getting a little bored by the time Clint Eastwood showed up, so I wandered off to make a snack and missed the full effect of Invisible Obama…and I started channel-surfing halfway through Marco Rubio’s speech…but I listened to everything in Mitt Romney’s RNC speech.

Halfway through Mitt Romney’s speech, I tweeted, “But what are you going to do for people with disabilities, #MittRomney?”

Nothing About People With Disabilities in Mitt Romney’s RNC Speech

Not that it surprised me mightily to hear nothing about people with disabilities in Mitt Romney’s RNC speech. I don’t expect to hear anything about us in Obama’s speech next week at the Democratic National Convention. Canadian politicians don’t talk about us either.

But I feel like there should be some concerted thinking going into how to win the vote of people with disabilities and the people who love them/work with them/are concerned about the issues affecting them. After all, US Census data shows that approximately 20% of Americans have a disability. http://www.census.gov/newsroom/releases/archives/miscellaneous/cb12-134.html That’s a lot of voters, Mitt Romney, especially when you consider that the families of these people and people that work with people with disabilities will be evaluating your position on disability issues as well.

As Powerful as the US Gov’t Is, It Still Has *Some* Power

Discussing Mitt’s plan to bring the USA back to prosperity with a friend, I pointed out that I’ve heard nothing, in Mitt Romney’s RNC speech (or in anything else he’s said) about what he’s going to do about the fact that the unemployment rate for people with disabilities is nearly twice what it is for people without disabilities. He said that he that there wasn’t much that the government could do about that.

I take issue with that. You can’t legislate what people think and feel, no. But you can certainly legislate that they can’t discriminate or cause harm on the basis of it, and there’s precedent for the federal government stepping in on cases where this is happening:

  • Declaring that groups have protection against discrimination in the workplace, hate speech, and hate crimes.
  • Recently, sending the Department of Justice to investigate whether New York City’s extremely low number of accessible taxis was in violation of the ADA.
  • Even more recently, starting the process to phase out sub-minimum wage for people with disabilities.

Just something to think about.

Matters of Employment

In Mitt Romney’s RNC speech (in all his speeches, in fact) is, he’s talking about getting people back to work and cutting entitlements. If he wants to get people with disabilities working and off income supports, he’s going to have to acknowledge that employers are going to have to be willing to accommodate needs. When I worked in special education classrooms, the schools had to work around the fact that I couldn’t assist with lifts and transfers when working with students in wheelchairs. Sometimes this was a struggle to coordinate, but I was good at my job in all other areas, so schools didn’t mind moving things around for me a bit – but they did need to be willing to work with me, or the job wouldn’t have worked. Employers will need to keep in mind that they need to approach hiring people with disabilities in this manner – they can get very good, very qualified people, but may need to bend on things like permitting extra breaks or allowing an employee to work from home once a week, allowing a nurse to come into the office for half an hour once a day to assist an employee with health needs, or doing a staff education session on how to respond when someone is having a seizure.

Some people are going to need supports if they’re going to work. Look at Anthony in my previous entry. He’s started his own business (and I’ve heard from Mike that they’re swamped with requests!), but he needs some support to keep things going. And speaking from my experience, most of the people with intellectual disabilities with whom I’ve worked need either some agency or one-on-one support to get and keep a job. If Romney’s goal is getting them employed and off income support, he has to be willing to spend some money on supports somewhere else.

And some people have disabilities that simply don’t allow them to work. Unless the US government is prepared to have them starve/freeze to death, there has to be money for them to keep themselves alive. They didn’t ask to not be able to support themselves, and charity/churches/community simply can’t handle all the needs of these individuals (in addition to those of all the other individuals in communities who are living in poverty). Besides, not everyone has a family or community to support them, and faith won’t keep you warm and fed.

There was a promise in Mitt Romney’s RNC speech that he would “help you and your family”. I just don’t know if, for families that have people with disabilities in them, that would be the case if Mitt Romney were elected. But this is all conjecture. Since there was no talk about people with disabilities in Mitt Romney’s RNC speech (or any of his other speeches) how’s anyone to know what his position is?

We’ll see how Obama fares this week at the Democratic National Convention.



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“The Gristle in The Stew”: Stories from Former Residents of Huronia Regional Centre

I was going to post an awesome video today about a young man with autism that’s living a life he loves in his community with the support of his family

huronia regional centre

By the 1960s, the Huronia Regional Centre had more than 2,600 residents – 700 more than the facility was designed to accommodate – with more than 1,000 on the waiting list. Source: ‘One On Every Street’, an information film for families. http://www.mcss.gov.on.ca/en/dshistory/firstInstitution/firstInstitutionPhotos.aspx

and a worker. But there’s some more information that I want to find out first, and I came across a podcast this weekend that I found interesting. It’s a bit of a time commitment (half an hour), but well worth the listen. It definitely provides some context for those that wonder why it’s such an achievement that we’ve gotten to a place where people with developmental disabilities of all types and degrees of severity live and work and in community settings, and why advocates keep pushing for even greater degrees of community integration. For people that are familiar with the history of abuse and oppression of people with intellectual disabilities in government-run institutions like Huronia Regional Centre, parts of the podcast won’t be surprising…but I’ve known the history for quite some time, and was definitely taken aback by some of it. Know in advance that some of it is difficult to listen to.


(try this one of the link above doesn’t work – thanks, Tim! http://www.cbc.ca/player/Radio/The+Sunday+Edition/ID/2170549480/)

Huronia Regional Centre – Telling the Stories

“The Gristle in the Stew”, created and narrated byDavid Gutnick, is largely an interview with Marie Slark and Patricia Seth. They are the two women who are responsible, with support, for launching the first of 12,000 action suits for damages against the Ontario government by people with intellectual disabilities who lived in the provincial institutions. Marie and Patricia Stem lived in Huronia Regional Centre, the largest and oldest of Ontario’s institutions. Huronia Regional Centre is now closed. It was orginially called “The Orillia Asylum for Idiots” when it opened in 1876. You can hear how much the women hated and feared the place in their voices, as they’re interviewed on a visit to the site.

“It was a bad place,” says Patricia of Huronia Regional Centre, on the way there.

A former resident (David McKillop, also a plaintiff in a class action suit) of Rideau Regional Centre, another instituion that is now closed, is also interviewed.

For a long time, parents were told that institutionalization was best option for children with intellectual disabilities who, because they were so “limited”, would require full-time care and never learn to do anything for themselves.  I’ve seen many of the people who grew up in these institutional environments, under the “care” of staff who assumed that they’d never be able to learn any skills, go on to live semi-independently and independently once they went on to live in communities. They have jobs and friends, and participate in community activities, and what I’m sure were dark times in the institution doesn’t seem to hold them back.

That really impresses me, because I’m sure that these sorts of things would hold me back if they were done to me as child:

  • Being dropped off by my family at a strange place and being told by them that I’d be there until I died (Patricia).
  • Beatings, slaps…being kicked in the groin repeatedly (David)
  • Being locked in cupboards
  • Having my head held under hot water (Patricia)
  • Being made to lie facedown on the ground for punishment and having people step on my head if I turned my face. (Marie)
  • Being turned upside down and held by my legs while water was run over my face (Patricia, who says that this felt like she was drowning).
  • Being overmedicated
  • Having all my teeth removed for “safety” reasons
  • Being sexually abused (David)
  • Being told that if I tried to report any of this, I’d be punished, and that staff would get the other kids to abuse me (Patricia)
  • Being punished by having to hold heavy pails of water in both hands for extended periods of time (David)

So Slow to Move, Even Though They Knew – Closing Huronia Regional Centre

Journalist Pierre Berton wrote a column about the conditions at Huronia Regional Centre in 1959. He wrote about the terrible overcrowding and unsanitary conditions, the stench of urine and feces in the living quarters, and his belief that Huronial Regional Centre was a firetrap. But it was another 50 years until the last residents left the Ontario institutions and all of them, including Huronia Regional Centre were closed for good.

According to the documentary, the government says that Huronia Regional Centre was managed in accordance with the standard of care at the time, and responds to allegations of abuse with “Prove it.” Patricia has a made a list of the people who abused her.

Ontario’s institutions are closed, but the other provinces haven’t followed Ontario’s lead, and there are still institutions open in the US. It’s time for all of them to close. Even if they all employed all the best practices of client care for institutional care, it’s significantly cheaper (with better outcomes for clients) for governments to fund people to be in community residential settings.

And institutions clearly haven’t used best practices to care for people. Let’s do something about this.

“The Gristle in the Stew” has already won several awards.

A post that I wrote about Willowbrook State School, an American institution for people with developmental disabilities: http://www.girlwiththecane.com/celebrating-developmental-disabilities-month-with-inspirational-stories/

More about Huronia Regional Centre:

http://www.mcss.gov.on.ca/en/dshistory/firstInstitution/huronia.aspx  This is a government website. Note what they do and don’t talk about.



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Disability and Emergency Preparedness: Some Thoughts

emergency preparednessI have a friend who actually does a lot of work in the emergency preparedness area, and who has been a part of the teams assisting people with disabilities in emergencies infinitely more serious than the one I encountered last night. But a night in the dark in my apartment building was definitely enough to make me think about emergency preparedness and about how much more vulnerable people with disabilities and chronic health conditions are in emergency situations…including myself, because my emergency preparedness plan simply isn’t good enough.

Emergencies in My Apartment Building

Due to the demographics in my area and the nature of my apartment building, most of the residents are seniors. Some are in very good health and, like me, require very little support to live in the building. Some aren’t in such good health, and rely on a lot of medical home supports and other community supports and/or support from family and friends to remain living independently.  The management helps as much as they can by making sure that people sure that have lots of notice for events like maintenance work in the building and community (including planned power outages that are going to last for several hours) to make plans.

Of course, not every power outage is planned. But  the unplanned ones rarely last long. Our hydro crews, for all our complaining, are very good at getting things back on track quickly. However, whatever knocked out our power last night did an especially good job – it was out from 8 pm last night to 4:30 am this morning.

Emergency Preparedness – I Need a Better Plan

My normal emergency preparedness plan for a situation like last night’s is to read until it gets too dark and then go to sleep until the power comes back on. But this time I was acutely aware of a few things:

  • I’d been on the phone long-distance with a friend who was possibly going to be worried that I’d suddenly disappeared. I don’t have a cel phone. I couldn’t email her, because my modem was, of course, not working. I couldn’t even call her if I could track down a phone that worked, because her number was trapped in *my* phone, and I wasn’t sure I had it written down anywhere else.
  • Going to my father’s was out of the question – how was I going to call him?  I’ve only been without a cel phone for about a year, and feeling as cut off as I did last night was absolutely unnerving.
  • I couldn’t find my flashlight and it was getting dark.
I ventured out into the lounge after a bit to see if anyone was around who’d heard anything about when the power was coming back on. I was able to use someone’s cel phone to leave my father a message with my friend’s email address, asking him to email her and let her know that I was okay. And I realized that other people were having emergency preparedness issues too.

Emergency Preparedness – When Things are Unplanned

A woman sitting in the lounge had come down earlier in the elevator to visit with friends. She was now stuck in the lounge until her daughter could get over there (and she wasn’t sure when that was going to be) to help her get herself and her oxygen tank back up the dark stairs.
As I talked to her, I found myself starting to wonder about other people in the building with health problems, and what their emergency preparedness plans were. We knew by now that it would be a while before the crews could get the power on. What if it stretched into tomorrow? I knew that the management would bring by bottled water for drinking, but people would need to start flushing toilets…the nurses would need water for medical treatments…without the elevator in service, some people wouldn’t be able to get out of the building…as I continued to think, I got more and more anxious about the prospect of prolonged power shortage.
In my own apartment a bit later, there was still enough light that I easily changed my clothes and went to bed. But when the cats got me up later in the night for food (I don’t know how much later because my digital clocks weren’t working and my IPod wasn’t charged), I had the treat of trying to navigate my apartment with no light at all. Not safe. Not smart of me, to misplace my flashlight.

Important Things to Consider

How would I have handled all this a few years ago, when I was considerably less mobile?  I don’t know that I even have a first aid kit if I fell now and hurt myself…

How would I have handled this if I’d had an intellectual disability and my support person wasn’t coming in until morning?
If you’re supporting people in these situations, you need to consider if you/your agency has an adequate, understandable (for you/staff and for the person) plan in place for each individual.  Don’t wait until it happens and try to cobble something together then.
And…what’s *your* emergency plan? Is your level of emergency preparedness acceptable?
Canadian Red Cross article on Emergency Preparedness kits: http://www.redcross.ca/article.asp?id=33847&tid=001
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Blood on Texas’ Hands: Execution of Marvin Wilson

I have to admit that I’ve been aware of this story only peripherally until lastMarvin Wilson night. I knew that there was an inmate in Texas with an intellectual disability whose execution date was approaching. I knew that his lawyer was fighting for a stay. I think I thought that I had more time to research the case and eventually cover it here. And then last night, I learned the inmate’s name: Marvin Wilson.

I read on my Twitter feed that the Supreme Court in Texas had officially said that the execution could go through. I read that  Marvin Wilson’s last assessment said that he had an IQ of 61. I saw the tweet at 7:45 pm, 45 minutes after his execution.

I called a friend and I cried and cried.

Tears for Marvin Wilson

I guess I should put out there that I’m rather strongly anti-death penalty (like that’s going to shock any of my regular readers).  Especially so in a circumstance like this. I do agree that it should be unconstitutional to use the death penalty on people with intellectual disabilities.

Not that Wilson shouldn’t have been punished for his crime (which was allegedly murder; some evidence suggested that he was not the shooter, which the Supreme Court chose not to address.). But, discipline is a dicey issue right from early childhood for a person with an IQ that low. We have to first ask ourselves if they truly understood that what they did was wrong, and find the best way to get that across. Traditional discipline methods don’t always do the best job at that. Was prison? I don’t know. I don’t know much Wilson understood about his actions, or about prison, or about how he connected the two. My concern is more with how he connected his actions and his death. Did he know that he was going to die? Did he understand why?

My Hopes for Marvin Wilson

I’d like to think that Wilson’s lawyers worked hard with him to make sure that he understood everything in the process that was going on to the greatest extent possible. I’d like to think that the prison was fully cooperative in allowing Marvin Wilson as much time with his lawyers  or some kind of support services as needed to work through these issues. The justice system can be terribly confusing for people with intellectual disabilities.

There’s another part of me that hopes that Marvin Wilson  didn’t know that he was going to die, because I’m scared to death that he really didn’t have the capacity to understand why.  I don’t want to think of him dying in that kind of fear.

Ultimately I guess I just hope it was quick and that Marvin Wilson didn’t suffer.

And I hope that you lose some sleep over this, Scalia. The critera that you used to decide whether or not he had an intellectual disability, in the absence of an assessment that you trusted, was bullshit. You should have had another assessment done if you were concerned. There was plenty of time.

This was a man’s life you had in your hands.  Shame on you.

More on Marvin Wilson: http://www.reuters.com/article/2012/08/07/us-usa-execution-wilson-idUSBRE8761H120120807

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A Rant for a Thursday: Telemarketing

It’s time to check whether I actually am on Ontario’s “no call” list that’s telemarketingtheoretically supposed to keep most telemarketing firms from calling me. I’ve also started wondering about whether some other people that need to be on that list actually are.

My Stance on Telemarketing

I can see on my phone who’s calling, and I don’t answer calls that look like they’re from telemarketers. I figure that if it’s a call legitimately directed to me, they can leave a message. But sometimes I slip and grabbed the phone without looking at the number, or I answer because I get tired of seeing the same number over and over and over again. I hang up on automated pitches right away. If I get a live person, I listen to the initial pitch. Then I politely tell them “No thank you” (unless it’s a charity to which I’d like to donate), and I hang up.

Unless they’ve been really aggressive, or are calling me about something about which I’ve already gotten multiple phone calls, I try not to be rude. This is only a person trying to make a living. I always knew I’d be terrible at telemarketing, so I’ve never applied for those jobs, but there have been times when I’ve needed a job badly enough to consider it. I’ve got nothing against people reading a script and getting paid for it.

My Stance on the Current Climate of Telemarketing

I *do* have something against how aggressive those scripts have gotten. Even many charities hire telemarketing firms to solicit donations because they are, of course, very effective. When I get a call from a telemarketing firm on behalf of a charitable agency, frequently I can identify what sales technique is being used on me and sometimes I still end up giving a small amount of money that I didn’t intend to at the beginning of the call.

If I can cave to that kind of pressure, others easily can as well. When I’m short on money and I really can’t afford to give, I don’t. But not everyone can recognize that a telemarketer isn’t going to ask, “And can you afford this?” before suggesting an amount that they’d “love to see you give”. Too many of the people I’ve supported in the past assume that all people are looking out for their best interest. And, bless them, they’re easily confused. They’re targets.

Small Blessings

Mind you, I don’t imagine that many of them have the access that I do to a credit card, that the money will “disappear” before they hang up the phone, and they may change their mind about a cheque by donation by the time the mailing materials arrive. I know that I often talked with people about how they shouldn’t give money to anyone just because they asked for it. I suggested that they talk any request like that over with someone they trusted before making a decision.

And it’s not my business anyway if someone I supported want to respond to a telemarketing call by donating money, except for my concerns that current telemarketing techniques make it very difficult for anyone to say “no” to donating…and anyone on the Ontario Disability Income Support Program by definition has an extremely limited income.

What to Do About Aggressive Telemarketing

I don’t know what the solution is. When I first noticed charities starting to get really aggressive with their telemarketing, I actually spoke with an employee at an agency about my concerns that people who didn’t understand to what they were agreeing or didn’t have the confidence to stand their ground with a “No” or a hang-up were particularly vulnerable. It was from this discussion that I learned that telemarketing firms are doing more and more work for charities.

If you’re supporting someone with an intellectual disability that you believe may be vulnerable to this sort of aggressive marketing (seniors, for a variety of reasons, may also be vulnerable), investigate whether there’s a “no call” list in your area and what it covers. Other suggestions to deal with telemarketing:

  • Encourage them to get a phone that shows the number of who’s calling and to adopt a rule of “I don’t answer calls from numbers that I don’t recognize.”
  • Encourage them to get an answering machine to pick up any legitimate calls that they don’t pick up.
  • Encourage them to say “No” to any requests for money that they get over the phone. Explain that if they’d like to donate money to a cause or purchase something, there are other ways to do it; they haven’t lost their chance.
  • Include in the “Saying No” discussion that if someone won’t stop asking for money when they say “No”, they should hang up immediately.

Credit Where It’s Due

All that being said…

Once, after explaining to what seemed like the umpteenth telemarketing employee that week that I didn’t have a job and couldn’t afford to give that year (and getting ready to repeat the speech before he suggested that I just reduce the amount that I generally give), I got this response:

“Sorry to hear that, ma’am. We’ll catch you next time around. Good luck.”

I wish I could remember which charity he was calling for…

Oh, and please don’t tell me I’m a sucker…I know it already. 😉

How do you deal with telemarketers?

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Encore Post – Work and ODSP: The Case for Providing Choice

This is a reblog of a post I wrote about working while on ODSP. I have some more things that I’d like to say about it, and wanted people to see this post for context. Back with new content by Monday at the latest. :) – Sarah 

When I first started volunteering with people with intellectual disabilities, long before myODSP brain avm and surgery, I was perplexed as to why the people on ODSP that the agencies supported didn’t work more.

Shouldn’t Everyone, Even Those on ODSP, Work if they Can?

I knew that many of these people were on Ontario’s government support system for people with disabilities: the Ontario Disability Support Program (ODSP). I knew that you could only make a certain amount of money each month before your earnings started to affect how much you got from ODSP each month. And I knew that many people with disabilities were highly motivated to stay on the ODSP program because ODSP provides medical benefits that most jobs that a person with intellectual disabilities would not be able to obtain.

However, being still in my teens at the time and being blessed (cursed?) with an over-developed sense of fairness, I wondered why, if these people couldn’t work for pay, they didn’t volunteer more. There were definitely places in the community that were happy to have them volunteer.

Why did I have to go to school all day, 5 days a week during the school year and then spend 5 days a week working all day, and my parents have to work all day, every day to keep my family going, when the people that I was volunteering with could simply decide that working wasn’t something that they wanted to do, and sit around and collect a cheque?  The question festered in the back of my mind. I know that it festers in the back of many peoples’ minds.

A Change…but Why?

Fast forward years later, after the brain AVM and the surgery, to working with youth with intellectual disabilities. Not very many of the youth with intellectual disabilities that I worked with decided that they didn’t want to work when they were done school, but there were a few who did. I counted them as successes in my program, because, even though they weren’t out and doing something, they truly were doing what they wanted to be doing. I’d have rathered that they be out and working, because I knew they were going to get bored very quickly, but it wasn’t what they wanted. So we planned for them to be home.

I hadn’t resolved for myself why this had become “okay” for me at this point, except that I now strongly believed that people should be allowed to choose what they wanted to do in life – no matter what I, or anyone else, thought they “should” be doing.  It wasn’t until a debate on an internet  message board with somebody who thought that people with intellectual disabilities shouldn’t be getting any help from the government or government agencies at all, that volunteer service would more than provide for their needs if we’d just let it (*that* particular conversation got me right riled up, let me tell you) that I sat down with a pen and paper and worked out for myself exactly why I felt income support for people with intellectual disabilities was necessary and why I thought they had every right to decide exactly how much or how little they wanted to work while they were receiving it. That cemented my change of heart about what people on ODSP should/should not be doing.

When It’s Not Your Fault that You’re Not Wealthy Enough to Choose…

People who get to the point where they can decide how much they want to work usually do it in one of two ways:  They come into adulthood independently wealthy (or, by some twist of fortune, become independently wealthy), or they work really damn hard to get to the point where they can retire early or at least take a reduced schedule…and you have to have a fairly high-paying job to allow you to do this.

People with intellectual disabilities generally don’t have the option of going to school to get the education required to get a really high-paying job that’s going to allow them to retire early, or have a lot of money to invest. You can’t invest while you’re on ODSP.  In fact, you can’t have more than $6000 in your bank account at a time when you’re on ODSP, or you’re cut off.  The money you get is for survival, not for building a future.

It cuts down the options. No savings. No education. They can’t make the choices we do, because they don’t have the monetary resources to make those dreams a reality, nor the options of going to, say, college or university to get better-paying jobs.

In fact, for some people, meeting their basic needs on their monthly ODSP allotment is a dream that they can’t make a reality.

Once I realized how far behind the eight ball not just people with intellectual disabilities, but people with disabilities in general are in society, it made me look with more patience and compassion on those who chose not to find work while on ODSP. I did choose to work. But I’ve been blessed with a good education and very supportive family and community to help fill in the “gaps” that have made working difficult for me; not everyone is so lucky.

I’m not trying to be negative; I sometimes just need to acknowledge the realities of the world that we live in.

I like to believe in the hope of fabulous things even in disappointing times.  I hope you do too. :)

Have a great weekend…

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A Girl With The Cane Confession…

I admit it. I use the word “idiot”. A lot. Just this week alone, I’ve used it in reference to Michael Bloomberg (for idiotthinking that banning supersized sodas in New York is going to have any effect on obesity rates), Jay Townsend (the Communications Officer for Republican Representative Nan Hayworth, for saying, “Let’s hurl some acid in the faces of those female Democratic Senators who won’t abide the mandates that they want to impose on the private sector.”), and my best friend’s ex-boyfriend.

I Feel Like An Idiot…No, Wait…

Melissa McEwan over at Shakesville reminded me of something important yesterday, though. “Idiot” is ableist language. So is “moron” and “imbecile”. They’ve all got pasts as sordid as “retard” when you get right down to it. It all just goes further back in history, and we’ve started to forget.

I’ve known about all this for a long time. I learned in training to be a Developmental Services Worker that “idiot” was historically used to refer to someone with a very low IQ. Several American states have only just updated their language to remove “idiot” from their laws, and changed outdated laws such as those that prohibit “idiots” from voting.

But I forget.

I really don’t think that very many people know that when they use the word “idiot” they’re using a term of widespread oppression toward people with disabilities. But, as commenter Hellianne explained on Shakesville when McEwan reminded someone that “idiot” was ableist and therefore not acceptable on the site: “It is precisely because the term is used as a derogatory term and because it originated as a label for a marginalized, unprivileged group that it is not welcome in this space. The age of the term isn’t really relevant; the point is that it designates a disability as an inherently negative (and hateful, in this case) thing.”

It may not seem like a big deal. But imagine if we started to use some of the language related to the oppression of other groups that has now fallen out of favour. Think of some of the racist terms that (for good reason) are no longer used anymore. Use your imagination. I don’t want to say them here.

I need to be more careful with my words. I need to make more of an effort to remember.

Thank you, Melissa and Hellianne, for a much-needed reminder.

Do you use any words that you know you shouldn’t, out of habit?

Visit Shakesville: http://www.shakesville.com/

Image credit: cteconsulting / 123RF Stock Photo

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Intellectual Developmental Disorder and the DSM-V

The deadline for public input on revised diagnostic criteria for autism in the DSM-V is June 15th. There’s been a lot of controversy on this, so be sure that you’re well-informed and that you voice your opinion about any of your concerns. See this blog post for a starting point on where to research what’s been going on with controversy:  http://www.girlwiththecane.com/diagnostic-criteria-for-autism/

Also bear in mind that there’s been controversy over the revised diagnostic criteria for mental retardation, starting with renaming it Intellectual Developmental Disorder.

Yes, “Mental Retardation” is Diagnostic Criteria

And bravo to the American Psychiatric Association for finally moving away from it in the DSM-V.  Services providers Canada and the US have been using the less emotionally-intellectual developmental disorderloaded “intellectual disability” for at least as long as I’ve been involved with developmental services, and the US government has recently made a commitment to use “intellectual disability” in its disability legislation. It’s going to be much easier to get people to stop using “retard” and “retarded” in reference to people with disabilities when there’s no clinical term with the word “retard” in it to give those slurs any false air of legitimacy. Like most things, however, this particular redefinition of diagnostic criteria isn’t that simple:

  • “Mental retardation” changes to “intellectual developmental disorder” (as I mentioned).
  • The criterion that the disability begin before age 18 disappears, replaced by one that the disability begin “during the developmental period”.
  • The IQ criterion, now 70 or under, becomes more flexible, shifting the focus more to  the individual’s level of adaptive functioning.

“Intellectual Developmental Disorder” Doesn’t Roll off the Tongue…

Advocates at organizations such as The Arc and the American Association on Intellectual and Developmental Disabilities fear the DSM-V’s use of “intellectual developmental disorder” and the departure from the more standard “intellectual disability” will confuse people. I do agree that this could potentially happen. However,  it’s not like the official diagnostic term hasn’t differed from the everyday language for years.  I have never in my career, unless I was speaking specifically in clinical terms regarding the official DSM diagnosis with a colleague who understood my context, spoken about “mental retardation” in my work. I use “intellectual disability” with the people I support, with their families, and, the overwhelming majority of the time, with colleagues.  I probably still will, unless a superior directed  me to use “intellectual developmental disorder”. I doubt I’ll be alone.

Now for the Famous “That Being Said…”

I’m fascinated by the “developmental” element in “intellectual developmental disorder”, particularly in light of the fact that there will be more flexibility around the IQ standard. A lot can happen to a child before age 18. They may not be born with a condition that traditionally causes an intellectual disability, but what if a traumatic brain injury caused by a car accident leaves a teen with the severe deficits in adaptive functioning that a teen with an intellectual disability might experience? Or impair ability to perform on an IQ test to the point where it looks as if the teen’s IQ has suffered a drop into the zone associated with intellectual developmental disorder? The developmental element provides a way to assist clinicians to differentiate between what is truly an  intellectual developmental disorder and what disabilities require a different diagnosis and perhaps more appropriate treatment and supports.

Because Diagnosis Determines Supports

For a long time, Ontario’s definition of developmental disability (often used interchangeably with “intellectual disability” in the province) was IQ-bound (as is the DSM-IV’s diagnostic criteria for mental retardation).  I’ve seen how this can make decisions tricky about who gets and doesn’t support within the developmental services sector, particularly for people with an IQ in the low 70s. People in this “borderline” zone got from services that they needed because of a couple of IQ points.

Watching how the IQ criterion sometimes prevented people from getting services that they need, creating more cracks through which people could fall, was very frustrating for me and for others in social services. Knowing that Ontario’s definition of developmental disability is now less IQ-bound and more skills-based is a relief. I was relieved the see the APA making a similar shift in its proposed diagnostic criteria for intellectual developmental disorder. Unfortunately, I haven’t been in a position to get any hard data about how that shift is working for people with developmental disabilities in Ontario, but the move does make intuitive sense to me.

The Bottom Line

I do have concerns:

  • I’d prefer that the APA stay away from the word “disorder”
  • I think that the developmental period in which a person needs to develop the signs of  an Intellectual Developmental Disorder in order to receive the diagnosis needs a description.
  •  I think that diagnosticians are going to want to know how much latitude they have with the IQ criterion, but I assume that they will receive information about that.
We’ll see how this goes.

Please submit any concerns on proposed redefinition for diagnostic criteria in the DSM-V before June 15:

Intellectual Developmental Disorder: http://www.dsm5.org/ProposedRevision/Pages/proposedrevision.aspx?rid=384

Autism Spectrum Disorder: http://www.dsm5.org/ProposedRevision/Pages/proposedrevision.aspx?rid=94

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