Siblings say depression in disabled adults is their top worry

By Louise Kinross

Concern about the mental health of a brother or sister with a developmental disability was the most pressing issue for over half of 360 Canadian siblings who completed a survey by the Sibling Collaborative released in March. “People with developmental disabilities are three to four times more likely to have depression and anxiety than the typical population,” says co-author Helen Ries. “As life goes on, and they face more adversity—such as the death of their parents, and changing living situations—it’s not lost on their siblings that mental health is an issue, and there are very few resources to support them.” Two years ago, Helen wrote a piece for BLOOM about her own experience having her brother Paul come to live with her and her husband after the death of their parents. We spoke about the findings of the survey.

BLOOM: Do you think siblings identified depression and anxiety in their brother or sister as the top challenge because they know the statistics, or because it’s something they’ve experienced in real life?

Helen Ries: I think they’ve seen it in real life. When you have a brother or sister who has faced discrimination, harassment, and, potentially, even abuse their whole life, you know there’s going to be some kind of negative outcome on mental health.

We asked about 13 different challenges, and we didn’t expect mental health to come out as number one. But I don’t want to forget the mental health of parents. That was rated second. As brothers and sisters, you watch your parents deal with so much over a lifetime. One respondent talked about how her parents were in their 90s and still looking after their adult child.

BLOOM: I know Yona Lunsky at CAMH is studying which interventions reduce depression and anxiety in parents. Almost half of your respondents said getting emotional support for themselves was a challenge.

Helen Ries: Every sibling journey is different, and it depends on at what juncture they might need that support. For example, in my case I was faced with the death of my parents and transitioning to sudden caregiving. You have your own grief, and you have the added anxiety of trying to learn in two to three months what your parents learned over 40 or 50 years. The expectation is that you will continue to support your brother or sister in the same way your parents did. You go to Developmental Services Ontario and say ‘My brother is alone in the world, what can we do to best support him?’ and that crisis point doesn’t trigger anything. I think we need to be supporting the mental health of siblings early on, and it should be part of programming.

BLOOM: Housing was listed as a top need for 60 per cent of respondents. How can you respond to that when in Ontario, the wait for a group home is over 20 years?

Helen Ries: Everybody knows that housing and financing paid support are huge issues within the disability community. What’s heart-wrenching is that this is problematic over generations. As part of our survey, we asked ‘Where is your brother or sister living?’ In early adulthood, it’s not a popular choice, which is understandable, because it’s not easy. But we noticed there’s a jump in later years when they are living together—and that speaks to the fact that there really aren’t other options. There comes a point, related to the aging of parents, where housing becomes a potential crisis.

BLOOM: For people who need 24-7 support, everything really falls on the parents to create something.

Helen Ries: I think it’s because there aren’t a lot of options, and there is a lot of judgment and criticism around different choices. We’ve been criticized for choosing to live with my brother. It’s difficult for families when you face criticism. It can lead to a lot of second-guessing.

BLOOM: In terms of getting information to help them, siblings in your survey said friends and family were their top choice. But you note that in focus groups, you learned parents don’t share information with siblings.

I wanted to comment, as a parent, on why that may happen. I came to Holland Bloorview in 1999, and for the next decade, I went to all of our sibling workshops. The advice we got was to make future plans for the child with disability, independent of siblings, so as not to place anxiety on siblings. But the reality is that with no public housing and funding shortages, it’s impossible to make a plan like that. So in my case, as my son got older, I went silent. I didn’t want to harm my other children by telling them there was no plan, so I just didn’t say anything.

Helen Ries: I don’t think you’re unusual. Parents feel guilty and confused and they don’t have a lot of choices. In our family, my parents wanted me to have my own life. My dad had a plan that I was not involved in creating, but there are very few parts of that plan that still stand today. I think that’s because life is so dynamic and things change. This discussion in families has to happen over a lifetime. It needs to be ongoing and dynamic and include siblings. As a family, what kind of life does my family member want, and how can we support that?

BLOOM: I think there are siblings who naturally want to play a big role, but for others, for many reasons, they may not be able to. What happens when a sibling says no?

Helen Ries: Well, at least you have the information you need. What you said is really important—for some siblings it comes naturally, and for others it doesn’t, and that’s why every sibling pair is on their own journey.

I know it would be very hard to have these conversations. When parents come to chat with me, I see that instead of enjoying life day-to-day, they’re so worried and stressed about what’s going to happen that a lot of joy 'now' is lost.

PLAN in Vancouver is doing a lot around developing a future planning tool. You may not be able to do all of the parts, but maybe you can do one part. For example, my parents got the RDSP stuff right and the Henson trust stuff right, even though they weren’t able to solve the housing problems for me. That helps me to fill the duty I have now.

BLOOM: Sixty-five per cent of respondents said they’d like an online website with information that could help them.

Helen Ries: There are some areas in which we can provide support. For example, in helping siblings build resilience, which is the mental-health piece. How do you have a creative mindset to help you with problem-solving? Or maybe in sharing ideas from siblings who have found solutions. Our collective is based on contribution and collaboration and is an asset-based perspective. We want to lend our experiences and ideas to other organizations, to build their capacity around the sibling issue. This doesn’t have to be housed within the disability realm. This is a huge issue. It’s a gender issue—mostly affecting women. It’s a poverty issue. It’s a homelessness or housing issue.

Helen will be discussing key findings of her report with co-author Eric Goll and CAMH psychologist Yona Lunsky in a PRP webinar on May 14. Two recommendations are to create a national survey, as this survey had a majority of respondents from Ontario, and a national conference for Canadian siblings in 2019. The third author on the survey is Becky Rossi. You can join the collaborative on Facebook.

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LIGHTS spurs families to take action on housing

By Louise Kinross

LIGHTS is a Toronto program that brings together families of young adults with intellectual disabilities to help them plan creative housing so their sons and daughters can move out. It’s a partnership with Community Living Toronto and was founded by Mary Pat Armstrong, a parent who purchased a home for her own daughter and roommates to move into more than a decade ago. 

Yesterday LIGHTS senior facilitator Laura Starret met with me to talk about the innovative partnerships and ideas LIGHTS is generating at a time of crisis for housing for people with intellectual disabilities. Last year a report from the Select Committee on Developmental Services said there were 12,000 Ontario adults on a list for group homes with a wait of 20 (yes TWENTY!) years.

BLOOM: How does LIGHTS work?

Laura Starret: LIGHTS is about helping families to envision, plan for and create an alternative living situation for their son or daughter outside of the family home. The families engaged with LIGHTS are tired of waiting for the traditional housing options [through the government]. They know that the system is broken and they’re ready to take action. They want to tailor housing to their son or daughter’s unique needs.

BLOOM: How do you work with families?

Laura Starret: Most of what I do is help families plan and budget and meet other like-minded families. When Mary Pat chatted with focus groups about developing LIGHTS she found a lot of parents felt isolated and alone. They felt they were the only ones out there thinking about this. Of course they’re not alone—I’m working with over 150 families.

BLOOM: How do you connect families with similar interests in housing?

Laura Starret: The most effective way is through networking evenings where people come out to hear about a particular topic. At one of the evenings I had a continuum on a wall and asked both parents and their family member to take post-it notes and stick them on when they would like to move out—in the next six months, or 12 months or two years. Two families whose children have since moved out happened to place their post-it notes on the same spot. Families come up with the ideas of what they want and I connect ones that sound like-minded.

BLOOM: What kind of housing have you facilitated?

Laura Starret: We’ve had a family purchase a home and invite other families to join in. So they’ve figured out what the costs are and given other families a lump sum of ‘this is how much it is and this is what your dollars are going towards.’ It’s an all-inclusive type living situation.

Other families have come together to rent an apartment. In one case they found a university student who’s a mentor to two young ladies. She doesn’t pay rent but in return she spends about 10 hours a week with the two women supporting them with whatever they need: ‘You’ve never made meat loaf? Let me show you how to do that.’ In this case, the support needs of the two women are different, but the mentor can tailor her interactions to give each one what they need.

LIGHTS has also benefited from a partnership with Community Living Toronto, which supports 38 people living in 21 units in a Toronto community housing project. LIGHTS is using four of these apartments. Some residents require 24/7 type of support and others need only a few hours a week. Some units are rent-geared-to-income, which makes them most affordable for someone on the Ontario Disability Support Program (ODSP). The people in this building say their social circles have quadrupled because of the greater opportunity to socialize with people.

We have three gentlemen who live together in a house. They go to a program or to work during the day but have a caregiver who lives with them Sunday until Friday morning, to help with their evening routine. On Friday the men go home for the weekend and the caregiver has the weekend off. Every situation is different.

BLOOM: Is LIGHTS just for families with high incomes?

Laura Starret: No. I always tell families you have to take a creative approach to it. The vision for LIGHTS has always been that it’s about you helping me and me helping you. Families will contribute in different ways. Having open dialogues and people to bounce ideas off motivates people to move and creates momentum. We recently had a real estate agent volunteer to do apartment and housing searches for our families.

Once a family has a partnership with another family or families, we do an individualized budget with each person. The budget is based on shared costs and costs unique to that person. So we apply the person’s own resources, like the ODSP, and list out all of the expenses, leaving us with a gap. The family is expected to contribute a minimum of 20 per cent of the gap. LIGHTS has raised $4.7 million over the last five years. In some cases LIGHTS can help fill the gap. When we’re planning with families it’s not just the residential side, it’s for the person’s whole day.

BLOOM: How many housing arrangements have you facilitated?

Laura Starret: We’ve had 30 that relied on LIGHTS funding to bridge the difference, but others that just required planning, budgeting and networking support.

BLOOM: What kind of changes have you seen in people who have moved into their own place?

Laura Starret: We’ve seen some pretty incredible stuff. Families often report how people are doing things they would never do at home. We see people being open to taking risks, meeting new people and expanding their horizons.

Photo by Louis Thomas 

Alexander and Simon, in photo above, are two LIGHTS friends who decided to rent apartments in the same building and meet once a week to cook dinner together. You may remember this piece we did a year ago about two young women whose families got together through LIGHTS to rent an apartment that they share.

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Letting go

By Madeleine Greey

“Okay ladies, here’s your homework. Figure out what you’re willing to let go of. Make a list. Then prioritize it over the first year of your daughter's independence.”

Gulp.

I looked over at Margaret and her jaw hung in awe.

I locked eyes with LIGHTS senior facilitator Laura Starret who had just dropped this bombshell. She returned my glare with a happy little smile that said “Good luck with this one!”

It’s that happy little smile that kept us going.

Margaret and I—two single moms—had signed on for a momentous task: assisting our adult daughters into supported independent living.

My daughter Krystal, 25 (above right), has Down syndrome. Her roommate Karen (above left) is 26 and has Kabuki syndrome. Both young ladies are bright, able, courageous and developmentally delayed. They knew they wanted to move out of home but couldn’t do it alone. Via LIGHTS—a program in partnership with Community Living Toronto that supports innovative housing options for adults with intellectual disabilities—our two families connected and figured this out.

LIGHTS is dubbed a Match.com for parents planning independent living for their adult children and on a cold, winter evening last year, Karen and Margaret, Krystal and I, all found ourselves at a LIGHTS meeting facilitated by Laura. In fact, we collided on a bulletin board. Each of us had placed a neon-coloured stickie on the “ready to move out in six to 12 months” section.

Krystal and Karen had attended the same high school and while they weren’t really friends, those stickies got them wondering if they could be roommates. They wanted so many of the same things, like a downtown, east-end apartment with laundry facilities that was walking distance from the subway and grocery shopping. Plus, they wanted a third roommate who didn’t have an intellectual disability but was their peer—someone who could be a role model and mentor and was interested in getting free rent in exchange for about 10 hours of support every week.

How did they know this you might ask? The answer lies in umpteen LIGHTS meetings, incessant planning and lots of visualization. 

Pragmatic and impatient, I found this process maddening, but did manage to spot magical balloons of progress float and pop along the way. Laura knew just what to say to get both of our daughters talking—unleashing a torrent of ideas, fears and dreams that neither daughter would have felt comfortable sharing had Margaret or I piped in. We all learned to listen and wait, until that fateful day in June when it was time to start hunting for an apartment.

PadMapper.com became our best buddy. An aggregate search engine, PadMapper provides listings in the neighbourhood of your choice. We got to know the rental market quickly. Seeing the apartments made it less abstract for Krystal and Karen who were better able to say what they liked and didn’t when standing inside the real thing. The more we looked, the better we knew what we wanted.

Laura had warned us that the process would jump into second—if not third or fourth gear—once we started hunting for an apartment. Margaret and I were quickly overwhelmed with rental applications, negotiating leases, credit checks and securing tenant insurance. It was a steep learning curve that landed us a lease on September 13th for a three bedroom, renovated duplex apartment a block away from Woodbine subway station. It seemed only apt to call it KK House (in honour of Krystal and Karen).

But KK needed their third roommate before they could move in. We started an active email campaign posting our ad throughout the disability community, U of T Housing, plus colleges offering disability studies or support worker programs. CVs began to roll in and we conducted half-a-dozen interviews at the dining room table of the yet-to-be furnished KK House.

Maggie, our chosen mentor, is a York grad student with no background in disability. She's into theatre and English and is a dramaturge and playwright. She found out about the job through her church.

On Halloween, Krystal, Karen and Maggie moved in. They doled out trick or treat candies to their neighbourhood’s little goblins and started to get to know each other over dinner. Boxes were unpacked, milk and butter went in the refrigerator and posters went on the walls. Margaret and I had done our homework and knew what we were ready to let go of. Everything was planned out but nothing had been put into motion until that night.

Of course, things were bound to happen once the independent living began. The smoke alarm went off, the toilet handle broke and there were squabbles over what was shared and what was not in the kitchen. Both Krystal and Karen expressed freedom from “The Tyranny of Mother” in private and individual ways.

We all expected some bumps ahead.

But what we didn’t foresee was the power of dinner together. Maggie, Krystal and Karen had agreed to planning, shopping and making three budget-conscious meals together per week. While brainstorming over recipe ideas, delegating shopping errands and manning the stove, the three have become a family learning a lot more about each other than food preferences.

Two poster boards went up in the kitchen: a monthly calendar where everyone entered their commitments outside the house and a big white bulletin board announcing the week’s meals and menu, along with quick questions and reminders to one another.

Maggie deftly straddles the dual role of mentor roommate and contracted employee/tenant. She has learned to recognize and mentor Krystal and Karen’s varying needs without becoming a caregiver. In other words, she shares a home with them, offers guidance and leadership, but has her own busy, independent life too. Margaret and I meet with Maggie weekly or bi-weekly to review, plan and strategize. All of us have come to realize that regular and thorough communication is the oil that lubricates this machine. Whenever there’s a problem, we all try to talk about it, no matter how uncomfortable and while we don’t always find instant solutions, progress is usually made.

Back to the homework Laura assigned months ago, that business about “letting go.” It’s been the single most difficult part of this project, hurting more than any one of those airless, suffocating budget meetings or the packing up of Krystal’s childhood bedroom and putting it in a moving truck. The grief ran deep and terrified both of us, bringing up painful memories of her father’s death five years ago.

Parenting a child with a developmental disability is one hell of a job. We invest years of pain and joy in the process and letting go of it doesn’t just happen because you complete your parental homework—or not. Every time my daughter accomplishes another independent task, be it turning off the smoke alarm or taking pride in a meal she prepares, I can let that thread between us fall a little slack while knowing where the real bond lies.

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A mother's dream for inclusive, arts-based housing takes shape

By Louise Kinross

A community garden and farmer’s market, arts programs, yoga and a café are part of a Toronto housing community Skye Gross (above left) envisions will bring adults with disabilities and artists together to live and work.

“This is a radical departure from anything we’ve seen before,” says Skye, whose daughter Rachael, 18, has complex medical and developmental needs. “The current housing, recreation and job opportunities for people like my daughter are minimal, expensive, isolating and stigmatizing. I don’t want that for her, so I decided to build something better.”

Skye joined with Jan MacKie (right) and Karin Farkashidy (centre) to create the non-profit Triluma Living Collaborative, which aims to develop this new model of housing. The three women have a long history as leaders in Holland Bloorview’s Spiral Garden and Centre for the Arts.

“We’re looking to create a holistic community that will be completely inclusive, not just of people with developmental challenges, but of artists, wellness practitioners, families and community organizers,” Skye says.

The project will incorporate housing as well as commercial ventures that draw the public in.

Triluma is a response to the current housing crisis for adults with developmental disabilities in Ontario.

Earlier this year, a report from the Select Committee on Developmental Services said there were 12,000 Ontario adults on a list for group homes with a wait of 20 years. The report also noted that 2,300 families of adults are waiting for respite in a province with only 225 available respite beds.

Since then, the Ontario Ministry of Community and Social Services has partnered with MaRS—the medical research and social innovation hub in Toronto—to develop and test new housing models.

In April, MaRS issued a Challenge Brief with this question: “What would homes and communities need to look like for citizens with developmental disabilities to achieve citizenship: to live in the communities they choose, to grow and lead full lives?”

Skye hopes Triluma will be chosen as a MaRS incubator project to receive pilot money.

“No matter how lovely I make our beautiful, accessible home, eventually I’m not going to be here anymore and I don’t want my daughter being thrust into a strange environment with people she doesn’t know,” Skye says. “People want affordability, an end to isolation, and this notion of meaningful livelihood—as opposed to killing time watching TV. Our model addresses those elements.”

Skye hopes that a Triluma community will be operational in five years. “To start with we’ll need government support, but we won’t rely on ongoing government funding. Our financial model will allow residents to pay a reasonable rent in exchange for contributing their time to building and sustaining the community.”

That could mean growing food in the garden and selling it at a weekly market, or working in the café or in an arts program.

To launch their inclusive community building model, Triluma is offering Welcoming Back the Light workshops on Sunday Dec. 7 and 14 from 2-4:30 p.m. at Evergreen Brick Works.

Bring your kids and learn how to build lanterns and work with light and shadows in preparation for a Winter Solstice celebration on Dec. 21 at 5:30 p.m. All are welcome!

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Community Living looks beyond adult 'group homes'

By Louise Kinross

Several years ago Chris Beesley wrote a BLOOM piece about how raising his son Mitchell, who has Fragile X and autism, had changed his life and career aspirations.

I met Chris last week in his new role as CEO of Community Living Ontario. I wanted to talk about options for housing for adults with intellectual disabilities.

Next week 100 of Community Living’s executive directors are coming to Toronto to brainstorm ideas that move beyond the traditional group home. The group will hear updates from an Ontario Developmental Services Capacity-Building Task Force on Housing, the federal program My House, My Choice, and a partnership between the Ontario Ministry of Community and Social Services and MaRS research hub, which issued a challenge brief to develop creative housing solutions for people with developmental disabilities.

Earlier this year an interim report from the Select Committee on Developmental Services noted there were 12,000 Ontario adults on a list for group homes with a wait of 20 years. TWENTY years.

So with my son now 20—as is Chris’s son—I wanted to hear about possibilities for change.

BLOOM: What is Community Living Ontario?

Chris Beesley: We support individuals and families in creating full citizenship for people with developmental disabilities. That means living where and with whom they want to live, inclusive education, work—either paid or volunteer—and recreational and social connections. Everyone needs to have friends.

BLOOM: Can you update us on new provincial funding for developmental services as a whole?

Chris Beesley: In the provincial budget $810 million dollars over the next three years was put into developmental services. The Ministry of Community and Social Services currently has a budget of about $1.7 billion. When this is rolled out in its entirety, it will bring the ministry's budget to a little over $2 billion per year. The net result is that there will be an extra $372 million annually in the system.

BLOOM: It sounds like a lot of money, but given the needs, it isn’t.

Chris Beesley: The money will be used to eliminate the wait list for Special Services at Home and Passport funding, and to cover new people coming into the system. They’ve also committed to 1,400 residential spaces.

BLOOM: But if 12,000 people are on a wait list, 1,400 spaces is just scratching the surface. What kind of residential spaces?

Chris Beesley: Some will be group homes, some will be individuals living with a family, like a foster situation, and some will be supported independent living. Our goal is to see government support individuals in their residence of choice in a flexible way. Eventually, we’d like to see residential dollars flow through Passport funding. Passport is individualized funding, but it’s currently capped at $25,000 and can only be used in the community, not for overnight support. Right now there are individuals who receive hundreds of thousands of dollars for residential support a year, but it flows through agencies. We’d like the option, where appropriate, to unbundle that from the agency and give it to the individual, so the individual is in control of where they live and who supports them.

BLOOM: What’s an example of out-of-the-box thinking?

Chris Beesley: Twenty five years ago 10 families came together to create an intentional community in Pickering. They accessed federal and provincial funding to construct a housing co-op with 115 units, seven of which would be occupied by their sons and daughters. They pooled the support funding their children received. 

BLOOM: How has it worked out?

Chris Beesley: It’s worked very well. But the parents have had to do a lot of the heavy lifting. Those parents are now in their 70s and wondering how they’re going to keep this up. We’d like to see better coordination and planning across government ministries, municipalities and agencies, so parents aren’t the ones trying to make all the connections.

BLOOM: What are you discussing at your housing conference?

Chris Beesley: We want to hear from our executive directors about what they’ve done, or seen, in their communities, that’s promising. What’s working, what isn’t, what are the barriers and the opportunities? We want to get a lay of the land so we can look at moving beyond group homes. We want to identify practices and models that the government may want to invest in.

BLOOM: Is there anything new you can share with us?

Chris Beesley: I just learned about how Community Living London has been successful in finding investors who want to buy houses, so that the agency’s money doesn’t get locked up in the bricks and mortar. They have 30 homes and 21 of them are owned by investors.

BLOOM: Do these investors have a connection to disability?

Chris Beesley: No, not necessarily. They’re people who want to buy a house as an investment and they want a reliable tenant who won’t skip out, and we’re able to provide reliable tenants. Community Living London has become known as a facilitator for matching great tenants and investors.

BLOOM: How can parents learn about what comes out of your conference?

Chris Beesley: Once we’ve had the event we’ll write a report that we’ll post on our website There's good stuff going on, but our challenge is to create the space for this conversation and to bring all of the parties together.

BLOOM: What ideas are you thinking about in terms of Mitchell moving out?

Chris Beesley: We’ve thought about selling our house and buying two townhouses, so we're close: one for Mitchell and one for my wife Lori and I. Maybe we'll move near a college or university so we can find a student who can live with Mitchell for cheap rent, and in return would agree to be there every night and morning.  Of course we'll need be part of the support, but this is a model that works for others so it's definitely something we'll explore.

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In the community, but alone

By Liz Lewis

What does it mean to be part of a community? To recognize oneself and be recognized as a member of a social group, neighbourhood, or everyday world? As an anthropologist, these questions are standard fare. As the only sister of a woman with disabilities and deafblindness, they are deeply personal.

On paper, my adult sister has a great setup. Katie receives government funding to live in a home five minutes from my parents, with a lovely roommate and conscientious caregivers. Yet my sister lives in near total isolation, with no friends, activities or hobbies. And I know that as an adult with complex disabilities, she is not alone.

Katie has a genetic condition called CHARGE syndrome and needs 24-hour care. She’s never communicated verbally, although she knows some signs and her expressions of happiness and dissatisfaction are easy to read.

Katie can’t drive, cook, or really care for herself, although she can feed, bathe and dress herself with a little assistance. As the mother of a toddler, I'd say that she and my son operate on similar levels. Although I'd prefer to write something lighter and more optimistic, the truth is that Katie can’t do most of what able-bodied adults, or even children, can.

These complex disabilities mean that independence, communication and social connections look different for Katie. She finds agency in deciding what she’ll have for her snack, for instance, or whether she’ll relax with television or ask to go for a ride in the car. She asserts herself by refusing to participate in an activity or by showing joy and excitement over trying something new. She expresses love and caring by sitting quietly next to someone, giving hugs, or simply smiling. She likes to pat my son on the head, but has been known to pinch him when she’s fed up.

It can take time and patience for people to learn how Katie expresses her needs, preferences and desires. Yet again and again I have witnessed her win over caregivers, professionals and acquaintances with her unique charms. This makes it even sadder to me that when I visit my hometown, where I no longer live, my sister is largely alone.

Among adults with intellectual and developmental disabilities in the U.S., Katie is considered one of the lucky ones, meaning that she neither lives in an institutional setting nor in her childhood home. Her access to a high-quality home and staff ensure that my parents don’t bear the brunt of Katie’s lifelong caregiving needs, which will become more complicated as we all grow older. Still, as both an anthropologist and a sibling, I am disturbed by what I see.

When I visit my sister, I can't help notice her neighbours’ lowered gazes as they quickly shuffle from their driveways to their own homes; we've never exchanged a word other than “hello.” I can only imagine what the children and teenagers on the block think of her house. Katie does not go for walks—indeed, I don’t believe her street even has sidewalks—so her only time outside is when she walks the 10 feet to a waiting car to take her somewhere, typically to a park or the drive-thru of a fast food restaurant. Katie might be in the community, spatially speaking, but she is not there in any meaningful way.

Even more disturbing is my sister’s lack of activities and hobbies, which would provide a sense of accomplishment and give her new social connections. For several years, she loved attending weekly equine therapy classes, but then the program lost funding and eliminated its offerings for adults with disabilities. My family investigated volunteer options, such as sorting food containers or recycling for nonprofits or donation sites, but came up short. One well-known local organization even told us that they couldn't let Katie volunteer for them because she might harm herself, offering paternalism as a thinly veiled substitute for blatant discrimination.

The longer Katie lives like this, the farther she seems to withdraw into herself. She loses skills she once had and, at least to me, seems less able to connect with others. She develops essentially anti-social behaviours, such as eating with her hands instead of a fork, which would likely be interpreted as a product of her disabilities even though they are completely new. Although I now live in another state and can no longer participate actively in my sister’s daily life, I am consistently saddened by what I see when I visit. And this is in a state that rates average or above in disability inclusion. To be sure, the situation is far worse in many parts of the U.S. and elsewhere.

The inadequacies of the current independent living and social inclusion movement are more than disability rights issues. They also connect closely to individual safety and public health. We are all safer when we have networks of people—family, friends, coworkers, neighbors and acquaintances —looking out for us. Katie has very few of these. Similarly, there is increasing scientific evidence that social isolation is bad for our health. How might it look if we as a society began to approach social engagement for people with disabilities not as a luxury, but instead as a pressing public health issue?

While great strides have been made in recent decades regarding the integration of people with disabilities, there's much more work to do. The need to rethink what we mean by inclusion is urgent. In the U.S., only 13 states plus Washington, D.C. have closed all of their institutions and, thanks to changes in federal law such structures will soon be a thing of the past. According to United Cerebral Palsy’s most recent annual study, The Case for Inclusion, since 1960 over half of our existing institutions have closed, and 16 more are slated to shut their doors by 2016.

Why not seize this transitional moment to prioritize a new approach to community services and opportunities that make social inclusion a reality, such as increasing access to recreational and employment programs for adults with disabilities? The challenges are large-scale and will require a powerful effort to effect change in existing structures, practices and assumptions. It must no longer be acceptable to equate integration with community living services. Families, self-advocates and allies must demand a more holistic, respectful form of inclusion that acknowledges the social rights and needs of people with disabilities. I, for one, think the time has come.

For more on community living and inclusion, refer to the University of Minnesota’s Research and Training Center on Community Inclusion and to United Cerebral Palsy’s The Case for Inclusion 2014. The Center for Human Policy, Law, and Disability Studies at Syracuse University also has an extensive list of relevant resources.

Please follow Liz on her fascinating blog Disability Fieldnotes or on Twitter @LizLewisAnthro. Her last piece for BLOOM was Disability was home: From big sister to anthropologist.

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They are us

Last year I heard Dr. Paul Browde speak about how marginalized people are often reduced to one story, one stereotype, one dimension.

Browde is a psychiatrist and assistant clinical professor at the New York University. He's also HIV-positive. Decades ago, as a newly qualified psychiatrist on an AIDS hospital unit, he remained silent in a meeting when a doctor referred to patients as SHPOS: "subhuman pieces of shit."

It was a few years before he shared his diagnosis and his story, first at a presentation at the American Psychiatric Association, then with his colleagues, and, when helpful, with his patients.

Browde, speaking at an international conference on the use of storytelling in health care, said a good life is one that can be richly described, one about which many stories can be told.

But, there are people "whose lives are reduced to one story, or a few habitual ways of describing their lives," he said. "I saw this particularly in people with intellectual disabilities who are reduced to the story of a diagnosis or of being disabled."

We don't allow these folks to have many stories.

Case in point. Last Thursday, at a meeting to discuss neighbours' concerns about police and emergency calls to a new Etobicoke group home for teens with autism and learning and emotional problems, including depression and anxiety, Councillor Doug Ford said: "You've ruined the community." 

He asked Griffin Centre, the agency operating the home, to relocate the teens, saying "no one told me they'd be leaving the house." He also asked whether any of the youth were sex offenders (they're not). A neighbour said: "This is not a place for mental patients."

Bingo. That tired old story about kids who have autism, kids who have mental health issues, kids who have disabilities. Kids who are different, kids who Ford says aren't us.

As a medical student, Browde says he was trained to think of physicians as invulnerable. "Until my own diagnosis, I viewed illness as something that happened to others."

Dr. Browde said it was his narrative therapy training that led him to see the clinical value of understanding "what it means to be a patient...You could call this empathy. The ability to imagine being in the shoes of someone else."

Empathy. Yes, that's what was so lacking at Ford's meeting to discuss the group home.

Memo to Councillor Ford: Youth with autism are our brothers and sisters, our family members, our friends. People with depression and anxiety are us. I've had severe clinical depression. I have a son with disabilities. Why, you yourself have a brother with an addiction, which is a mental illness according to the American Psychiatric Association's diagnostic manual. 

We have a few group homes here in my neighbourhood of Riverdale, and our property values are rising, not falling.

Why didn't you go to that meeting and ask the Griffin Centre staff to share stories about the teens who live there? Not their clinical diagnoses, but who they are as people, what they enjoy in life, what their hopes are? 

Why didn't you organize a meeting where the staff could educate the homeowners about autism, mental health issues and developmental disability?

Why didn't you ask the neighbours to work with Griffin Centre and the youth to make the teens feel welcome and worthy rather than feared and despised? 

Why didn't you ask the neighbours to call the Griffin staff directly when they have a concern?

Why didn't you ask the neighbours to be patient as this new home goes through its growing pains, in the same way you expect the citizens of Toronto to have compassion for our mayor?
 
Why didn't you allow those teens to be more than a stereotype?

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Ontario, MaRS pose citizen-centred housing challenge

By Louise Kinross

Two years ago we had the assessment necessary for getting an adult with an intellectual disability onto the list for community services, including group homes, in Ontario.

Ben, D’Arcy and I spent 3 ½ hours filling out what was a highly cumbersome, overly complicated survey that was supposed to measure how much support Ben needed.

Given we'd taken the morning off school and work it was galling to be told during the assessment that there were no services to be had.

We were asked to pick a lead agency that would be responsible for Ben’s needs, and we chose L’Arche, the homes for people with intellectual disabilities developed by humanist Jean Vanier.

Since then we haven’t heard a peep. Recently we met with a woman who helps families plan for their child’s transition and she encouraged us to reconnect.

This is the update D’Arcy provided after a phone conversation with Developmental Services Ontario:

-There are no longer “lead agency” designations (why were we not informed of this?).

-Ben needs 19- to 24-hour support in a home with no greater than 3:1 resident/support worker ratio, but these types of homes are non-existent. Any available spots would go first to people with complex medical needs.

-The list Ben is on is not a waiting list, but a needs-list. We are low priority because our family has two working parents.

-To have any hope of getting a call-back, it was recommended we raise the resident/worker ratio to 5:1.

Every parent dreams that their child will lead a rich adult life, one in which they choose to do things that matter to them, and are supported in a way that allows them to thrive and be happy.

To have your child’s future reduced to a conversation about worker numbers, with no discussion about the actual group home, its philosophy, the way it works, its strengths and weaknesses, where it’s located, and who else is there, is a slap in the face.

Back in March, I tweeted about the Select Committee on Developmental Services looking at the crisis in housing for adults in Ontario. At that time, the committee said there were 12,000 Ontario adults on a list for group homes with a wait of 20 years. TWENTY years. The report also notes that 2,300 families of adults are waiting for respite in a province with only 225 available respite beds.

It’s common knowledge that the only time people are placed in group homes long-term is when their parents die. Once that happens, who will be there to ensure the fit is a good one? Our experience has indicated that this is a numbers game that has nothing to do with the human being involved and their hopes and dreams.

Today I was thrilled to see this challenge to find solutions to the crisis by the Ontario Ministry of Community and Social Services and MaRS, the medical research and social innovation hub in Toronto.

In defining the problem, the MaRS Challenge Brief says that $1.15 billion is spent on residential support for about 18,000 adults with developmental disabilities in Ontario each year, but 7,300 adults are on a wait list (not sure about the discrepancy from the Developmental Services Committee numbers). The brief says that as of July last year, there were over 800 complaints by families to the ombudsman.

The Community and Social Services Ministry has partnered with MaRS Solutions Lab to develop and test new approaches to transform the system.

The challenge question posed was: “What would homes and communities need to look like for citizens with developmental disabilities to achieve citizenship: to live in the communities they choose, to grow and lead full lives?”

Six areas of research were identified. The paper says next steps are to:

-Convene partnerships across the four to six ministries of the government that impact people with developmental disabilities

-deepen understanding about people with developmental disabilities and citizenship

-Explore pent-up demand and information strategies that better inform future planning

-Explore and co-design citizen-centred alternatives. “Many social problems are often defined from an institutional perspective,” the brief says. “The lab takes a different view. Using tools from design thinking we try to gain a deep understanding of the problem from a citizen or user perspective. Not by just analyzing the numbers, but by also studying the people."

-Transform the system by exploring how to increase capacity to support family- and community-led innovation.

-Clarify and quantify developmental services objectives that are citizen-centred.

A number of our readers are very involved in these issues. Please give us your feedback on the details of the challenge PDF!

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L'Arche's lesson: Pay attention

Bénédicte Millet is a small, spritely, silver-haired dynamo.

Though it was the end of a long, busy day at L'Arche in Trosly, France she sat with me, listened attentively to my questions, and gave careful thought to her responses. She looked me in the eye and made me feel that what I had to say mattered.

Bénédicte works with a team of staff who support volunteers who come from across Europe to work at L'Arche -- a community that brings together adults with intellectual disabilities and young adult volunteers.

During our interview an older resident came to meet with Bénédicte. I assumed they had a prior appointment. Instead of ending our conversation, Bénédicte introduced us and explained I was from Canada. She treated this gentleman with great respect. "Bravo, Canada!" the man exclaimed. He then sat patiently while we finished talking.

Bénédicte first heard about L'Arche over 20 years ago when she was working as a speech therapist. "I was in Palestine working with deaf children and I met Jean Vanier who was there with a group from L'Arche on a pilgrimage," she said. "I was interested in how they related to each other. I felt they had very deep relationships. I came here to see and I've been here for 21 years. It's changed my way of life."

Before L'Arche, Bénédicte says she had always lived in her head -- "organizing, reflecting. I had lots of ideas, but I feel I was far from a human life. I was far away from a lot of people."

The message to change her life came from a L'Arche resident.

"I was still running a lot," she recalled. "To clean, to go to the supermarket, working, working, working. And one day a handicapped man in the home took my hand and told me: 'Now, you come and you sit here and you stay here.' And I did.

"I understood how this was a deep message for me to change my life and to pay more attention. In fact, I realize that (people with disabilities) have taught me to be really present. I see how I am different now. How I can be much closer to people. How my life is more interesting and more lively."

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Where friendship is the highest good

We'd just met that afternoon. But when I asked Olivier Caupin if we could have our picture taken, we embraced naturally like old pals. Just before the photo was taken, Olivier placed his head gently but purposefully on my shoulder.

"You are accepted," his gesture seemed to say.

It was the first of many surprises during my visit to L'Arche (The Ark) in Trosly-Breuil, France -- the birthplace of a community that brings together adults with intellectual disabilities and young adult volunteers known as assistants. The model, conceived by humanist, philosopher and theologian Jean Vanier, now operates in 40 countries.

Olivier was our official tour guide of the first L'Arche community created in 1964. It includes six homes, numerous workshops and greenhouses, a pizzeria and two stores where residents sell handmade soaps, mosaics and candles and homegrown fruit and vegetables.

Trosly-Breuil is a centuries-old village of white stone cottages with white shutters and beds of red roses, at the edge of the lush green Forest of Compeigne, about an hour north of Paris. L'Arche fits seamlessly here. Other than a small sign on the main office, there was nothing that set it apart as a place for people with disabilities.

"We propose to people with disabilities and every assistant to share the same life in the same homes and very simply," said Bénédicte Millet, a former speech therapist who heads a team of staff who support volunteers. Bénédicte, who has lived here for 21 years, spoke to me in English because I couldn't speak French. "We make a family atmosphere," she said.

Most important: "We take the time together to pay attention to everybody and to speak with everybody. To pay attention to those who never speak or who are sad. And to speak to those who are talking too much!"

That's what it was. Each person was acknowledged and valued. "It feels like a village," I said, referring not to it size but to its welcoming atmosphere.

"The message of L'Arche is that people with disabilities have something to teach us..." said Bénédicte. "They have the gift for relationships and we have to learn from them the ability of friendship and tenderness, not competition. We help everyone -- assistants and people with disabilities -- to grow in this capacity."

Olivier showed us around workshop number 2, where more than a dozen workers laboured over projects including small-scale assembly work and packaging of products. A few people were placing small metal pieces into trays of 30 slots to be used in the steering-wheel mechanism of cars. "My mother works at Channel," Olivier told us, explaining that this connection had led to a project packaging makeup. The workshop was part warehouse, with completed items stacked in boxes.

Olivier had a slight stutter and when his thoughts got stuck in production, he closed his eyes tight then blinked, as if willing the words to life. Because my French is so poor, my husband D'Arcy translated. Olivier shared the one phrase he knew in French and English: "Je t'aime. I love you."

Two young women approached and shook our hands warmly. One pointed to my hat. "Do you not have hair?" she asked in gestures. "Could you take off your hat?" I did and she opened her eyes wide and laughed. She didn't adhere to the social etiquette that would prompt someone to pretend they hadn't noticed my alopecia, which makes me different. Our culture's "addiction to the illusion of perfection," which author Ian Brown spoke about at a BLOOM talk, was noticeably absent at L'Arche.

Olivier took us outside and a tiny white dog trotted by. "Is that your dog?" I asked. "No!" Olivier exclaimed, pointing to a fine line that ran from his nostril to his lip and explaining he had been bitten by a dog as a child.

When asked about his favourite things, Olivier said: "Moi, j'adore le football." In addition to playing soccer, he said he liked swimming and horses, all activities he enjoyed at L'Arche.

We entered an art studio. People in smocks sat in a rectangle of facing tables placing small coloured tiles into elaborate mosaics of trees and people. One man was putting clay through a press. The scent of melted parrafin laced with fragrance wafted in from an adjoining room where candles were being made.

People were busy, focused and quiet. It wasn't immediately clear who had disabilities and who didn't. I had the sense that people wanted to be here -- unlike some programs where people with disabilities are cajoled into doing something they're not interested in.

Assistant Jean-Patrice Kroczek, a slight, middle-aged man with wire-rimmed glasses working on a mosaic, said he found work at L'Arche "very enriching."

Jean-Patrice told me he had lived and worked at L'Arche since 1976 -- 36 years! I was stunned, given popular values about work, success and climbing the corporate ladder, and asked why. "I've always liked being with people who are marginalized, because if it was me, I wouldn't want to be marginalized," he said. Jean-Patrice said people at L'Arche didn't "talk about handicapped people because we talk about working for everyone." Instead, he used the word "gifted" to describe the residents with disabilities. He said his time at L'Arche had taught him about personal relationships.

Hungarian Lilla Gyuris, 21, who came to volunteer last September, said she planned to stay another year. "It's very hard to explain what I've learned," she said. "I found life here. I found a family. And friends. When I arrived, I didn't know what to think. I thought (people with disabilities) weren't normal, but it's not true. Everyone is handicapped a little, and everyone is normal. I can't drive, that's my handicap. And when I came here I couldn't speak a word of French. That's a handicap."

The original L'Arche has grown over the years. Today, in each of nine homes in the village and surrounding area, seven people with disabilities live with a team of four to five assistants. One house serves people with physical and intellectual disabilities. While youth 18 and over have volunteered here from all over the world, candidates are now accepted only from Europe.

"Some assistants arrive with a lot of diplomas and are very intelligent, and others arrive with nothing, having had no success," Bénédicte said. "What we propose is the same for all: to clean the house, to buy and cook the food, to wash the plates after dinner, to make family life. For a lot of them, this is a new life. They're used to studying or eating alone and having their own life and suddenly we are all together and paying attention to everybody."

Six of the 10 assistants who began last September have chosen to stay a second year, Bénédicte said. After volunteering for a year, they will be paid. L'Arche is funded by the French government.

"When Jean Vanier started in 1964 there was nothing for (youth) with disabilities after age 14 or 15," Bénédicte said. "In 1960 a father of a young man with disabilities bought a home in Trosly to house 30 men aged 15 to 25. But it was run like military life with everyone getting up at the same time, going to sleep at the same time and walking two by two in Trosly in the street. There was no possibility for choosing what they wanted."

A priest who was disturbed by the home's regimented lifestyle asked Jean Vanier, then studying theology in Paris, to visit and assess the situation. Vanier "bought a small house in the village where he lived with two young men and was then asked to become the director," Bénédicte said. Over time, the project and its homes grew.

The idea was "to propose family life for the mentally handicapped and a place where they could choose what they wanted to do," Bénédicte said. Vanier, a professor of philosophy, called upon his university students from Canada, England and Paris to consider volunteering. "They were very interested in the project and many came. Social services observed the homes for two years and saw that with less money L'Arche was doing more than the other institutions. So they accepted L'Arche as an institution like the others and we receive money for everything."

While L'Arche is based on community life, residents who decide they want more independence have the opportunity to live, with support, in studio apartments in Compeigne, a nearby city. Bénédicte noted that two residents just got married and others choose to live as couples.

She said parents' expectations for their adult children often change once they see them blossom at L'Arche. "At the beginning, sometimes they want the child to become able to read and write, but more and more, they can understand that that is not the most important thing," she said. "When they see their child happy, with a lot of friends, and with a good life, a very interesting life," they are satisfied.

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Stuck in the nest

Last night two parents attending Donna Thomson's talk spoke about trying to obtain funding to create a group home for their adult children.

One dad noted that at age 21, when schooling ends, so do any kind of meaningful daily activities for their children.

The parents said that in their research, they had learned that there are about 21,000 adults aged 21 to 36 in Ontario receiving Ontario Disability Support Program funding who are in effect "sitting at home with Mom and Dad, watching television." They said that another 50,000 young adults with disabilities would come into the ODSP program in the next five to seven years. That's a lot of young adults sitting at home with Mom and Dad.

I don't know if these numbers are accurate, but it seems clear that we are in a crisis that is going to deepen.

This piece in the Globe today looks at the decades-long wait for a group home for adults with intellectual disabilities. Parents last night noted that they were told that the only families receiving housing for adult children in the province include parents in their 90s.

Donna Thomson said that securing funding for supported housing for our children is a puzzle we need to put together from non-traditional sources in the future.

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When is a house a home?

Last night I attended a workshop by PLAN Toronto on how to plan for a home for your adult son or daughter with developmental disability when you can no longer care for them.

We were encouraged to think outside the box: If all things are possible, what would our son or daughter like in terms of a home? What are their underlying values in terms of living?

A home needs to reflect the person's personality and choices.

The general consensus was that we can't rely on dwindling government funding or group homes, which don't have spaces, but need to think more creatively.

People talked about shared-housing options, where parents might renovate a house so that the son or daughter has a private apartment, but the whole family comes together in communal areas. We were asked to think about how we might generate money to pay for support services for our children by renting space or bartering for space (e.g. providing room and board to a university student in exchange for that student providing some type of support to our son or daughter).

We heard about arrangements where a support worker lived in a basement apartment, the person with a disability lived on the first floor, the parents lived on the second floor, and the third floor was rented to generate income. The house would then be left in trust to the person with a disability.

Developing a personal support network of friends, family and acquaintances who will continue to support your son or daughter after you die is critical.

Two families at the event had sons in a supportive home-share program. They live in a basement apartment in a host home from Monday to Friday, where they pay rent and have overnight supervision by the host. This is part of a Community Living program that, unfortunately, is not being expanded. The parents said living on their own had had huge benefits for their sons. The downside of the home-share was that there was always the uncertainty of whether the host person decided to continue in the program. This didn't provide the long-term stability we associate with home.

Parents talked about the great gains in independence their sons and daughters made when living away from the family home.

But they also spoke about how demanding it was to organize and manage meaningful activities for their adult children during the day. They said their lives often revolved around chauffeuring their children to volunteer and other activities.

The consensus of the participants was that group homes aren't an option because of wait lists and because they lack the qualities of home most parents want for their children.

We heard about a group of parents that meets monthly in Scarborough to investigate how families can work together to create housing options for their children.

Safe and Secure is a book produced by PLAN that outlines six steps to creating a good life for people with disabilities, including creating a home. It has useful worksheets you can fill out with your son or daughter. It can be found on the PLAN website or you can receive a complimentary copy at PLAN workshops.

I'm looking forward to one called Nurturing Friendship on May 18.

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