People with intellectual disability grow old alone: Study

By Louise Kinross

On Monday I got home just as D’Arcy and Ben were walking up the 26 steps to our house.

Ben, who had just got off his bus, was wearing his black and brown Tim Horton’s uniform—including a button-down shirt and visor—and D’Arcy was waiting for him as he climbed each stair. They got to the landing and Ben sped up with his characteristically lopsided gait, the result of a surgery that left one leg shorter than the other.

I was flooded with happiness.

I knew how lucky we were that Ben had two co-op placements in his last year of high school, and the human and transportation supports to make them happen.

But the moment was bittersweet. I quickly reminded myself that these supports will evaporate next year. When Ben leaves high school, he'll experience what families of children with significant disabilities refer to as "falling off the cliff."

And the findings of a large, longitudinal Irish study released last week paint a grim picture for people with intellectual disability decades later, in their middle to old age.

The research—the first in the world—compares the physical and mental health of 753 people with intellectual disability over the age of 40 with the general population over a three year period.

I was particularly interested in the findings on relationships in the study, which is called the Intellectual Disability Supplement to The Irish Longitudinal Study on Aging (you can download it here).

In contrast with the typical aging population, researchers found older people with intellectual disability are generally alone—single, without children, and living in a different area than other family, which makes seeing family difficult.

Three-quarters say paid staff are their most important “social partners”—read “friends.” Just over half have friends outside their home. For respondents with severe intellectual disability, more than two-thirds have no contact with family. Researchers found lack of friends and reliance on staff was just as problematic for older people living in community group homes as it was for those in larger, more traditional institutions. Respondents said they were most likely to confide in paid staff, well ahead of siblings and friends.

“Our findings show that movement to the community does not necessarily equate with community integration,” says principal investigator Mary McCarron of Trinity College Dublin, echoing a theme in this earlier BLOOM post. “Unless the community is truly organized and resourced to support aging people with intellectual disability…their experience may instead be one of social isolation, loneliness and new forms of institutionalization,” Professor McCarron said.

Almost two-thirds of older people with intellectual disability in the Irish study have trouble getting into the community, or don’t go out at all—with “need someone’s assistance” as the main reason they're stuck inside.

Researchers note that “living in the community” for older people with intellectual disability bears little resemblance to life in the same neighbourhood for the general aging population.

While older people with intellectual disabilities had significantly lower rates of high blood pressure and heart attack than the regular population, a majority were overweight, engaged in little physical activity and had osteoporosis.

Compared to a 33 per cent employment rate for the general aging population, only 6.5 per cent of older people with intellectual disability were employed at the three-year mark of the study. About 80 per cent attended a day program.

At the beginning of the study, 32 per cent reported never having attended school. At the three-year mark, over 80 per cent said they had trouble reading, writing, doing simple math and using money. More than 60 per cent could not read their own name.

The researchers note that for the first time in history, people with intellectual disability are growing old in considerable numbers.

I'm grateful that such a large, rigorous study is shining a light on this marginalized population.

But its results cast a shadow on my hopes for Ben's future.

Watching Ben climb the stairs with his dad on Monday I was happy that he had a co-op placement at Tim Horton’s, that he was wearing the standard button-down shirt despite his sensory aversion, and that son and dad were so pleased to see each other.

Ben prefers it when his dad waits at the end of the bus ride. Sometimes when I pick him up he’ll pretend to snap his fingers in a gesture of “darn.”

“I know,” I’ll say. “I’m your second favourite.”

I recognize we’re incredibly lucky that we have one more year for Ben in the school system, and that he is doing co-op five days a week: two days at Tim Horton’s and three days at Variety Village, the adapted gym. He has an assistant who goes with him. This allows D’Arcy and I to work regular hours.  

But at 21 our children lose the learning stimulation, routine and social connections of school, with nothing to replace them. Hiring workers to support your adult child can be extremely expensive. And you may be starting at ground zero to organize activities that are meaningful for your child.

We have a small group of workers, family and friends who met last weekend as a follow-up to a life-plan day we did with Ben, where we looked at his goals for the future and how we can support him. I hope we can come up with a mix of activities for him when he graduates that may include part-time work and a day program. People like my son deserve a better future.

I'm not convinced that the Irish study will result in richer lives for the seniors studied. I don't think the average person is concerned with, or willing to invest in, the happiness of people with disabilities. How can we change that?

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Composer finds the music in every life

By Louise Kinross

Northern Irish composer Deirdre Gribbin has produced over 50 works—from orchestral music to her opera Hey Persephone!—that have been performed around the world. Her UNESCO-winning work Empire States has played in 28 countries.

Writing music began as a way to express the conflict Deirdre witnessed growing up in Northern Ireland in the ’70s. “I saw things that kids don’t normally see,” she says. “Hijacked public busses blocking the road so you couldn’t go through, bomb blasts. I went to London to study and found myself writing about Northern Ireland. At a time when people couldn’t speak about Belfast politically, I could write about it in my music and I found it a powerful tool.”

Deirdre’s orchestral piece Unity of Being: A Peace Anthem for Northern Ireland was the first international work to be performed in New York City after the 9/11 al-Qaida attacks and was the subject of a New York Times piece. “It made me realize how music could cross barriers, redefine boundaries and have such strong purpose in people’s lives,” she says. “Music didn’t need words to communicate solace, sharing and comfort.”

After her son Ethan was born with Down syndrome in 2006, Deirdre came to see music as a potential voice for people with intellectual disabilities. “Why can’t someone with a learning disability who can’t speak write the most moving or the most joyful or the most angry piece of music?” she says. “If given the right and best technical support, people with intellectual disabilities can be the controllers of their own musical fate.”

Rather than skills-based music therapy outcomes, Deidre is interested in how music making builds self-worth. “If you give someone the skills to make decisions about how they want something to sound—about the shape of the piece or the structure or whether it expresses a certain emotion—it becomes their music, and then they have the confidence to be able to assert their own decisions in other areas of their life.”

Deirdre, who lives in London, is starting a composing group for eight-year-olds with Down syndrome—called Down Right Excellent—which includes son Ethan. “We may use colours or shapes to represent notes or emotions or types of music. I’m going to give them the language of music—so not just describing rhythm as fast and slow, but spikey and energetic, and how that links into emotions. They’ll learn about how to put music together. And if you can hear something that you’ve done, the sense of self you gain from that can really build your self-esteem: ‘I can’t do this and this and this. But I can do this.’”

Deirdre says raising Ethan has had a huge influence on her work. “The expectation when he was born was that he would compromise my work, or that I wouldn’t have the time to write music. But I’ve written some of the best music in the past few years.” Deirdre attributes this to her time being more focused—she goes away on retreats where she can write all day—and a greater emotional freedom in her work.

“I’ve always felt instinctively that it’s important to express emotional states through what I write, but now it’s very much at the centre of what I do,” she says. “I feel much stronger as a person because I’ve had to develop and nurture Ethan’s life and our family’s life. When you’re the parent of a child with a learning disability—and the mainstream is often acutely aware and subliminally critical of difference—you have to develop a side of yourself that is quite defiant and tough and never be afraid to challenge.”

After Ethan was born, Deirdre became interested in human DNA and how it works. “We were told that Ethan had an extra set of chromosome 21 and I came away thinking ‘What’s a chromosome and what does that mean?’” Last year Deirdre set a fragment of genetic code to music while working as artist-in-residence at the Medical Research Council’s Laboratory of Molecular Biology in Cambridge. Hearing Your Genes Evolve is the resulting string quartet.

“I learned that my son and a child without Down syndrome have 99.9 per cent the same genetic code,” she says. “And in that big 99.9 per cent, there are more similarities than differences.”

Deirdre wants to learn more about the content of chromosome 21. “Empathy, which is seen in people with Down syndrome, is genetic. It’s something in the genetic information that’s not just nurture. We should be looking not just at negative effects of Down syndrome, but at what it enhances.”

And instead of only measuring human qualities that have a market value—such as intelligence or athleticism—we should be interested in “things that make us better people, such as being selfless, caring and open.”

Photos by William Suarez

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Co-op man

Ben is doing co-op five days a week this year in two different positions. We are proud of him!

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A teen's tips on raising great kids

By Abdi Hassan

Hi! My name is Abdi! I am 18. I have a disability called cerebral palsy. This disability causes my muscles to stiffen up and gives me back pain, which is why I have a power wheelchair to assist me wherever I want to go.

I’m going into my fifth year of high school to upgrade some of my courses like English. I really enjoy writing stories and news articles. I love to exercise in school and have a great time hanging out with my friends.

Here I’m going to share my tips for parents who have kids with disabilities. I’m going to talk about how you can make sure your kids are safe, happy and as independent as possible.

First, I am going to tell you about three things my parents did that have improved my self-confidence and ability to be independent.

Number one, my parents learned about, and helped me to get, the equipment and supports that I need. My parents supported me in applying for the Ontario Disability Support Program.

The ODSP helps people with disabilities who are in financial need pay for living expenses like food and housing. My parents contacted the government and helped me to set up meetings to follow through on my application. If parents are unsure about how to apply for this funding, I strongly recommend contacting your social worker or asking another health professional at your children’s rehab centre.

Number two, my parents have started letting me take more responsibility for my actions. For example, I’m now able to book WheelTrans on my own, where before my mom would speak on my behalf. This is important because as your kids get older, they want to take control of their lives. I feel proud when I do things on my own. I want to be able to look after myself and show my parents that living on my own is a realistic goal.

The final thing my parents have done well is show me a lot of love. That really encouraged me to do my best and to believe that I could set my mind to anything. My parents always were there when I needed help with something. Your kids can probably tell by what you do and how you talk to them that you love them. But I think it’s a good idea if you tell your child every day that you love them.

Now, I’d like to talk about three things I wish my parents had done to help me feel confident while having a disability.

To start with, sometimes my parents make it hard for me to go out with my friends. They may not take me seriously when I tell them I want to go out or they may not let me go because they’re worried about me.

Having friends in my life is amazing. It’s like having siblings but they don’t live with you. I have the coolest friends that I know. They make me laugh and make me happy to come to school every day.

It’s hard to have fun with them after school, though, because my parents are too cautious. They don’t always feel comfortable letting me make my own decisions when it comes to my social life. Think about how you can support your child so that they can see their friends regularly.

Next, I sometimes feel like my parents don’t think that I’m going to have a career or be able to continue my education after high school. While they ask my siblings, who don’t have disabilities, about what they’re going to do when they graduate, they don’t ask me. It makes me feel like they think I’m going to stay home for the rest of my life. But the ultimate goal for me is to live independently. My parents have a hard time dealing with the fact that I want to live on my own. I want my parents to know I still love them, no matter what, and I’m not trying to disown them.

So please, talk to your kids and teens about what they want to do when they grow up and finish school. Help them dream.

Finally, I sometimes feel that my parents overreact around me, especially when it comes to my wheelchair driving. Sometimes they say I can’t drive my chair, and that I crash into walls a lot.

Occasionally, my body is in so much pain in the mornings that I do crash. I can’t help it. But it makes me feel upset when my parents panic about accidents. And that makes me more likely to have an accident, because I’m anxious about what they’ll say.

So parents, as much as you can, try to remain calm and don’t panic with your child. Encourage your kids to ask for help if they need it.

I hope you enjoyed my story. My message to kids with disabilities is that their disability shouldn’t stop them from their dreams and aspirations. Keep on fighting and never give up. Stay positive—that attitude always helped me work hard and become a better person.

As parents reading this, I want you to take a look at your child and smile and tell them you love them. To me that is the best way to stand alongside your child with a disability and to make sure that your child is safe, happy and as independent as possible.

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The 'unwelcome' mat

By Steve Kean

I love Toronto, I really do. But sometimes I just don’t feel the love in return.

A few weeks ago was one of them. I was at St. Lawrence Market getting supplies for dinner with my wife and a friend when my favourite cheese guy told us that he was leaving to manage a new restaurant in the neighbourhood. But the new hot-spot-in-the-making—in a historic building—won't be wheelchair accessible, he said, so I won't be able to check it out.

I have spina bifida and use a wheelchair.

I've been inside 400-year-old buildings in the U.S. that have been retrofitted, so I don’t buy the “well, it’s a historic building” argument anymore.

In 1967 my parents were supposed to be rejoicing in the birth of their first child. Instead, they watched helplessly as concerned doctors and nurses rushed to save my new life. Since that fateful day I've had over 15 surgeries and probably consumed more than $100,000 in health-care dollars. A system of people, most who've never met me, has expended substantial resources to keep me alive.

So why then is it that the system that valued me so highly when I was born doesn’t deem me worthy of having an accessible environment? Access means I can contribute and live a full life.

Too often, our health-care, businesses and city attractions and amenities seem to work against people with disabilities and their families.

Is it because we're not cute little babies anymore? Do I not matter because I'm a grown up—sometimes smelly, sometimes scruffy? Does the government believe that I should take care of all my needs just like any other adult?

Well, I can take care of most of them. I do a job, two in fact. I help to pay a mortgage and even clean the place. And, I cook. In my own home, designed from the floor plans to meet my needs and those of my wife, everything works. Our little box in the sky is my sanctuary. There I feel welcome. But life is lived outside too, and that’s the problem.

Sometimes as I wheel around Toronto I notice every barrier that society has put up to make me and other people with disabilities feel unwelcome.

I count every step. Every staircase. Every door without an automatic opener. Then there's the insensitive jerk who luxuriates in the comfort of the oversized, accessible public bathroom stall as I wait, trying not to piss my pants.

Usually I am 'grace under pressure.' But occasionally I come apart. I just snap. By the time I get home I'm raw. I need a hug. I need to vent.

There, in my soft place to land, I feel the warmth and love of my wife's hug. She listens quietly and intently as I recount my day. Sometimes I scare her: “Why did they bother to keep me alive and healthy only to throw me out into a world that doesn't appear to want me?” I'll say.

Businesses see accessibility as an added expense and don’t see the value. Many employers see a wheelchair or some other difference and don’t see the skills and abilities of a person. They have to be shamed or worse, forced by the law, into making people with disabilities part of the equation.

I've thought a lot about how I can cope better in a city that makes me feel like a burdensome afterthought, instead of an integral part. Maybe some of my ideas can help youth with disabilities and their families.

First, seek out that hug. Family and friends are on your side and we all need allies when we leave our sanctuaries and go after what life has to offer. Once your spirit is bolstered and a little less raw and raging, look carefully at the particular barriers that are getting in your—or your child's—way.

Who’s directly responsible for a barrier? Who can help you take it down? Try talking to them. It might just get fixed and you’ve helped not only you, but everyone with a disability who comes after you.

Some walls that get thrown up in front of us can’t easily be torn down and so all we can do is try to work the problem. Speak to someone on the ground, maybe the store manager. If that doesn’t do it, work your way up the line.

Toronto hasn’t put out the welcome mat for people with disabilities. Will it ever?

I can’t wait. Time is moving forward and limited. I am squeezing every ounce of life out of my years, to borrow from a cliché. See the golden light first thing in the morning. Take a picture in your mind or with your camera or phone. But see it. Feel it. Notice everything you can.

When the things you can’t access get under your skin, ask for that hug and then fight just a little for change. Other people will notice. The next person with a disability will be able to spend more time here enjoying life, and less time struggling and feeling excluded, thanks to you. Maybe they'll even feel welcome in Toronto, like they belong.

Steve Kean works three days a week as programs and services coordinator at The Spina Bifida and Hydrocephalus Association of Ontario and two days a week as Steve Kean Photographer, doing commercial photography. Visit if you are a foodie!

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'In the absence of care, medicine is dehumanizing'

By Louise Kinross

Medicine is made up of two things: treatment and care.

But patients and clinicians alike are suffering from a devaluing of care in the health system, says Kristen Slesar, a psychotherapist who works with trauma survivors. Slesar, who supports child witnesses at the Bronx District Attorney's Office, was speaking at a three-day narrative medicine workshop at Columbia University in New York.

“Treatment is the science side—the technology, the medication, the hospital bed,” said Slesar. “Medical competence has become about how many machines and tests and things we can apply. Patients need treatment. But what happens when treatment fails or the patient dies? What happens when there is no treatment?”

The other side of medicine is caregiving—“the efforts to make someone feel physically comfortable or emotionally accepting of pain or imminent death,” Slesar said. “Care is about the inbetween moments—it's about how treatment is delivered." 

The best care happens when a clinician attends to and honours the patient's story in a way that makes the person feel understood. “Suffering is not a neutral experience,” Slesar said. “There's nothing neutral about life-changing illness or injury or the shame, stigma, fear, hope, doubt and dread that go with it. Interventions [by clinicians] are either positive or negative. If the encounter doesn't add to healing, it's hurtful. In the absence of care, medicine is dehumanizing.”

Patients are consistently unhappy, Slesar said, not with the results of their medical treatment, but with the experience of receiving treatment without care.

Care—which demands authenticity and vulnerability on the part of the clinician—is given short shrift in our medical system, Slesar said. “Offering care is equated with consumption of time and providers are forced to see more patients than is fairly and equitably justifiable. When the quality of interaction with patients is seen as a function of time spent, and there is no time, good medicine isn't consistently offered.”

In addition, caring for patients is construed as “crossing into 'emotion land'—as unprofessional and subjective, as if by being authentic and compassionate we compromise our smarts and whatever we learned in medical school [flies] out the window. We deny that we are real people who are just as permeable as our patients.”

Doctors are encouraged to stay emotionally detached as a way of protecting their mental health, Slesar said.

Yet burnout in doctors is a widespread problem and doctors are more than twice as likely to kill themselves as non-physicians.

“Burnout causes mistakes and is incredibly common and is something people don't want to talk about,” said Slesar. “Burnout is a major cause of poor healthcare delivery. It's the cause and symptom of significant damage and suffering, not just in patients but in [clinicians].”

Not only are sterile medical interactions bad medicine for patients, but they hurt physicians, Slesar said. “Physician satisfaction comes from relationships with patients.”

But to have rich relationships with patients, doctors need to be able to think and talk about their own emotional reactions to working with people who are suffering.

Just as patients need a clinician to witness and help them find meaning in their experience, “we need to acknowledge who we are and what we do as providers. We need to be able to voice these doubts and fears: the sadness of the first death certificate, the embarrassment of not knowing an answer on rounds. We're loathe to talking about our fears and mistakes. We can't sit with uncertainty or fallibility.”

Writing groups for clinicians are a forum for “giving and receiving testimony, which isn't about the facts, but about the experience and the emotion” of practising medicine. “It's that we do it together,” Slesar said. “One person reaches out for a way to express and the other reaches towards to bring it in and let the person know they are not alone.”

In narrative medicine, participants read and discuss a passage from literature, then respond to a writing prompt, writing for three to five minutes. Those who are comfortable read their pieces aloud. “We hold pieces of writing out in front of us in this loving, benign ritual,” Slesar said. “We don't focus on the quality of the writing. We write about ourselves, and even if the question is about our practice, the writing is self-revealing and self-creating. We see things differently and we see different things.”

Unfortunately, efforts to 'care for the caregiver' like this are often pathologized, Slesar said. “You're accused of being weak. Or maybe you're not cut out for the job. And when you do take time to take care of yourself you feel you're being indulgent. Self-care may even be construed as immoral.”

Given the high rates of physician burnout and suicide, “nothing is more needed than nourishment for the imagination,” Slesar said. “What quality of clinician do you want to be? How can we go from the current state of affairs to something better?”

Medicine done well is a “co-construction between patient and provider, a giving and receiving. The patient ceases to be an injury or illness and becomes a person because we are a person. There is an openness to suffering by both participants.”

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Why I chose a 'special' school for my child

By Anchel Krishna

Having a child means making lots of decisions. When you have a child with special needs, you make decisions on top of decisions.

Last year, as my husband and I prepared for our daughter, Syona, to enter junior kindergarten we had a big decision to make: Enrol Syona at our local school or in a specialized three-year program that incorporated the standard curriculum with additional supports and therapies.

The local school meant a connection to our community—to other parents and kids who live close by. The special program meant three extra years to give our daughter a head start with smaller classes and therapists and teachers looking for ways to incorporate therapy into her day-to-day activities vs just setting up supports for her.

We participated in transition meetings, made lists, weighed the pros and cons and decided to enrol Syona in the specialized program.

One of my biggest fears as Syona’s mom is that people will look at her physical disabilities and communication challenges and underestimate her abilities. I’ve seen and heard how quickly and easily that happens in the school system. I figure three years of the specialized program—and the reports from teachers and therapists it'll generate—as well as opportunities for Syona to progress and mature will prepare her to transition well to our neighbourhood school.

Syona’s had a strong start so far in the specialized program. Despite the long commute, she has a great bus driver and has made some strong relationships with the kids on her bus. This is a great way for her to start and end the day. She has a wonderful and warm classroom team who truly care for her.

There have been tears (lots of tears). But that was to be expected. Syona’s an only child who spent the summer with her grandparents and several caregivers. She does a lot of one-on-one therapy. Up until this point, almost every adult in her life has provided her with undivided attention. At school, she’s learning to be a little more independent, play by herself and with her peers and, yes, that sometimes means a few tears. I know Syona will power through them and thrive at school.

When Syona comes home from a long day and asks to go to the park and I have to say no—because there's only just enough time to have dinner and a bath before bed—I wonder if we made the right decision.

But when she comes home and tells me about going swimming, or riding an adapted bike for the first time, I know we’ve done the right thing. As parents we make the best decisions we can at any given moment. I’m looking forward to what the next three years will bring.

Anchel Krishna is manager of communications at the Children's Treatment Network. She recommends these two CTN e-bulletins on Transitions to school and Special needs and the school system. Anchel blogs about special-needs parenting at Today's Parent.

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