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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Focused on access: Photographer launches new app

By Louise Kinross

Maayan Ziv found her life passion by accident.

After landing in New York on a high school trip, her power wheelchair broke down.

She couldn’t keep up with the jam-packed sightseeing itinerary of her peers, so she borrowed an old wheelchair to explore the area around her hotel.

Armed with a tourist camera “I started taking pictures of people and what I was seeing and I got so excited about documenting what I was looking at through this medium that I got hooked.”

Maayan launched her professional photography business at age 19 and is about to graduate with a master’s in digital media from Ryerson University. Maayan is a fashion, portrait and street photographer.

“When I started as a photographer I was nervous about letting people know I was using a wheelchair,” she recalls. “I kept who I was separate from my work. It sounds crazy because the more that I started recognizing that my disability and the perspective of sitting on a wheelchair was a large part of how I was taking images, the more I saw that it made me different from other photographers, and that was a positive thing.”

In addition to the physical perspective of sitting, “which gives me a unique angle, and the way I use my arms, which is different, it’s also a mindset,” Maayan says. “Since I was a very young age I learned to look at things in a different way in order to do what I wanted. For example, I looked at the ground to make sure there weren’t cracks that I would get stuck in. That kind of curiosity became engraved in the way that I see the world and I think that comes through in my images.”

Last week Maayan launched a new app as part of her master’s program called AccessNow. “It’s a crowdsourced map that anyone can join and add to. We categorize the accessibility of places in Toronto and beyond based on four levels.” For example, green means “totally accessible” while orange means “you can’t get inside, but there’s an awesome patio you can use in the summer.”

Maayan says that the map will visually mark the many places in Ontario that are supposed to be barrier-free by 2025, but aren’t. “It will allow us to see what needs work and where we need to go to create better access.” People from anywhere in the world can add to it.

Maayan, who has spinal muscular atrophy, is one of the first people to receive direct funding under a new $5 million program through the Ontario Ministry of Health and Long-Term Care that will enable her to hire her own attendants. “These are people who help me with all of my personal needs and help me around the house and may escort me to appointments,” she says.

In the past, Maayan relied on services from a Community Care Access Centre. But she couldn’t get the flexibility in hours she needed to maintain her busy schedule, so her family often had to help out. “Because I’m a photographer I’m never in the same place at the same time. I move a lot and travel for work so it was difficult to schedule care with CCAC that way.”

In the next two weeks, the 25-year-old is moving into a renovated condo of her own, made possible by “being able to manage my own care,” Maayan says. “I’m very comfortable directing and working with others and direct funding is a huge improvement in my lifestyle. It’s obviously a bit of an adjustment to go from relying on an agency to do scheduling and payroll to me taking that on myself, but once you get the gist of it, it’s pretty simple.”

Maayan encourages parents to “provide space for their child to explore and define what they can do, rather than telling their kids what they can or can’t do. Let your child figure it out and be there throughout that process. For me, as a child, I never thought of myself as someone who was disabled. I was able to go to regular school and do regular things and I think my parents had a lot to do with helping me have that confidence.”

Check out this video where Maayan explains why she was so motivated to launch AccessNow.

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Red, green, blue? Every store wants one

By Louise Kinross

When Luke Anderson graduated as a civil engineer in 2002 he moved from Ontario to British Columbia to pursue his passion: mountain biking. “I was in Rossland, the most coveted mountain-biking area of Canada,” Luke says. “It was a dream come true to live there among like-minded people and be part of that scene.”

But in the fall of that year Luke's life changed forever when he rode off a platform to jump a 25-foot gap and came up short. “I crashed hard, flew over the handlebars, landed head first, broke two vertebrae in my upper spine, and left my life as I knew it,” he says. He was able to talk his friend—who'd been filming his jump—through a 911 call and was airlifted to Vancouver General Hospital. After an eight-hour surgery, five weeks in intensive care and five months in rehab, “I was introduced to a world that's not well suited for a wheelchair user.”

Today, Luke's on leave from his job as a structural engineer to mastermind StopGap—a project that aims to dot Toronto's single-step storefronts with red, yellow, green and blue ramps.

“It's an effort to get the conversation started about barriers in communities that prevent people from accessing spaces,” he says. “The single-step storefront exists all across Canada so we thought why don't we paint simple plywood ramps in bright colours and offer them to businesses for free? We get volunteers to build the ramps and hardware stores donate the materials.”

Luke says the stepped storefronts are a relic from a time when streets weren't paved and customers used the step to knock the dirt and mud off their boots.

“The ramps aren't perfect, that's why we call it StopGap,” Luke says. “They provide a springboard to thinking about really great permanent solutions.”

StopGap has placed almost 400 ramps in Toronto and its how-to manual is sparking similar movements in other cities in Canada and the U.S.

Luke rates Toronto a 4 out of 10 for accessibility. Stockholm, on the other hand, is an 8 or 9. ”The Scandinavians are really progressive and think about everyone when they design stuff.” Vancouver is a 7.5.

Moving from a life filled with extreme outdoor sports to one where he had just enough movement in his arms to feed himself was tough, Luke says.

“I went from being a back-country skier and someone who loved climbing rock faces and ice climbing, to being someone who can't get into a restaurant. My world was now an inaccessible space.”

Luke recalls arriving at a Toronto concert venue he'd been assured was accessible to find 15 steps up. “The bouncer met me and said 'Okay, just hang out here for a second' and I figured he'd be back to show me the back entrance. But he came back with four of his bigger bouncer buddies and their idea of access was to lift me up those 15 steps. I'm wondering if I should put my life in the hands of these complete strangers or do I disappoint all of my friends and pull the cord on going to the show. I chose to get lifted up, but it was a situation that shouldn't have happened. I kept coming across situations like that and realized something needs to be done.”

StopGap began in 2011 when Luke enlisted friends to help build ramps on weekends. So far the group has targeted 12 Toronto neighbourhoods. “We knock on doors and talk to business owners, educating them about the need for a ramped storefront,” Luke says. “You'd be amazed that most people don't quite get it until we shine a light on the problem. Unless you've been touched by disability, it's not something you'd ever think of.”

Ontario's government has committed to making the province “barrier free” by 2025, but with 10 years to go, “we're not even halfway there yet,” Luke says. Municipal bylaws aren't helping. “If you want a permanent ramp you have to apply for a variance that would allow you to encroach on city property,” Luke says. “No mom and pop café can afford that.” Still, “the city is recognizing there's an issue,” he says, “and we've had meetings with bylaw enforcement and right-of-way committees.”

StopGap is organizing a silent auction May 29 and a crowd-funding campaign to support a summer tour that will bring ramps to 12 more communities across Ontario.

Since the province hasn't reached out to partner in any way, Luke hopes the project will appeal to private donors.

“It needs to be on people's radar that we're all going to need barrier-free amenities at some point in our lives,” he says.

Luke admits he never gave a moment of thought to accessibility before his accident. “In the early days it was a really tough mental battle coming to realize that this was a completely different way of life. I had heard stories about people walking out of rehab, but I knew that wasn't going to happen for me. For me, independence meant learning how to have others be a part of my daily routine—brushing my teeth, showering. I've got a stream of helpers that come and go and some are great and super helpful and others not so much.”

A painful part of his recovery was watching friends retreat when he couldn't return to his physically active lifestyle.

“I've grown apart from a group of buddies I considered my best friends. That was hard. I still have a hard time with it. When I go to bed at night I don't think of myself as someone with a disability. In my dreams I'm not disabled, I race my bike. But I don't live for the chance to be physically able again. That's not a useful way to go about life. There are many different ways to lead a fulfilling life and I feel I've been given a gift and a real opportunity to see a larger piece of the pie. I try to recognize difficult situations as an opportunity and embrace change.”

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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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Wanted: Your ideas on how to make services better

Ontario youth with disabilities and chronic health needs have a unique opportunity to tell government what they need to live a full, satisfying life and how children’s services can change to better support them. The I Have Something To Say project by the Provincial Advocate for Children and Youth seeks submissions from children, teens and young adults who’ve used pediatric services. The deadline to contribute is International Day of Persons with Disabilities on Dec. 3. BLOOM interviewed Janis Purdy, child and youth advocate, to learn more.

BLOOM: What’s a simple way of describing the Provincial Advocate?

Janis Purdy: We elevate the voices of children and youth to ensure that their wishes and perspectives are considered when decisions are made about their lives. Our mandated areas are youth justice; children’s mental health; child welfare; children and youth with special needs; and First Nations children. Youth with special needs are in our mandate because they receive services in hospitals or through service providers or the Ministry of Children and Youth Services.

BLOOM: What is the I Have Something To Say project?

Janis Purdy: It’s a project designed to enable children and youth with special needs to participate in and lead changes to programs, services and legislation. It gives youth access to decision-makers and enables them to influence policy and social change.

BLOOM: Who would you like to hear from?

Janis Purdy: They might be children with cognitive or developmental disabilities or any kind of physical or complex health concerns. They might live in a facility or be in the care of their family. We are looking for children and young adults of any age who have had experience with the child and youth system.

On our I Have Something To Say youth advisory, we have youth with really diverse backgrounds. Some have medical issues, some are living with autism, some have physical or developmental disabilities, some are siblings or family members. They are under and over 18. Some participate with the support of caregivers and some come on their own. They seem to be connected to each other in a really special way and want to make change in Ontario.

BLOOM: What issues do you want to hear about?

Janis Purdy: We want youth, with their lived experience, to tell us what they think needs to change. What services are good, what aren’t good and where are the hot spots?

So far, we’ve had youth express concerns about moving from children’s to adult services and the lack of services after age 18; about not getting supports they need to live with family, so they have to move into a more institutional setting; and about the education system. One student with autism wants to be in a regular classroom with accommodations, and doesn’t want to be bullied and isolated.

Many youth feel invisible and they want people to know more about their lives. Some want the opportunity to find their voice. They say 'Our whole lives we’ve had doctors, nurses and therapists telling us what we should do and must think, and sometimes it feels like I don’t even know if I have a voice.' One boy wants people to know what it’s like to live with his painful disease and how his parents have to fight every month to get the money he needs for bandages.

BLOOM: How can children and families participate?

Janis Purdy: There are several ways. We have a youth advisory committee that runs every month on a Saturday and works on projects in between. For kids who can’t reach us, we have a narrative project where we’ll come to your house to do an interview. The plan is to eventually compile these narratives into a book because it’s really the stories of children’s lives that are most interesting. Provincial Advocate Irwin Elman will make recommendations to government ministers and decision-makers in Ontario, and every recommendation will come from the kids. The book will be presented to decision-makers as a resource guide to learn more about these families and how change is possible.

On our website we’re gathering submissions from youth. They can be in any format: a video, a piece of art, an audio recording, something written by the child, or by their parents, or words transcribed for the youth. We are making an effort to listen in every way possible. Also, Irwin is available to come out to speak to groups and youth can contact him directly at irwin.elman@provincialadvocate.on.ca.

BLOOM: What if a child can't communicate in conventional ways?

Janis Purdy: Contact us and we’ll find a way that suits each child and family best. Tell us how we need to listen, or who we need to listen to, and we’ll do it. I’ve already done interviews with families whose children can’t speak. We have a sibling on our youth advisory who feels like she’s participating on behalf of herself and her brother, who died last year. She says: ‘I’m here for the two of us.’

BLOOM: When would we expect to see outcomes from this project?

Janis Purdy: There’s no ‘end’ to the project because we’ll keep doing this as long as youth in Ontario say there’s a need for change. Sometime later in 2015 Irwin will take everything he’s learned in different forms in a public way to decision makers.

To make a submission, go to the I Have Something To Say website or e-mail nikie.tentoglou@provincialadvocate.on.ca. To share your story in our narrative
project or to join our youth advisory call Janis Purdy at 416-325-5669 or e-mail janis.purdy@provincialadvocate.on.ca. Everett, pictured with his mother Rhonda above, and Joshua, below, are both youth advisors.

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New legal service aids Holland Bloorview families

By Louise Kinross

Your child has a disability and needs regular medical visits, but your boss threatens to fire you if you take the time off.

This is the kind of issue parents bring to Pro Bono Law Ontario at Holland Bloorview, a free legal service on non-medical issues that may compromise a family’s ability to care for their child with special needs. The service, led by our new onsite lawyer Hannah Lee, is offered to Holland Bloorview families with low to moderate incomes.

“How can a parent that’s being bullied by an employer or facing a hurdle in securing housing because their child’s medical needs are so great provide the best care for their child?” Hannah says. “I work with a network of lawyers and am here to give parents access to the information and resources they need. In most cases, we are able to advocate or find legal solutions. We try to shield parents from unnecessary stress so that they have the energy to care for their child.”

In addition to meeting one-on-one with parents, Hannah meets with lawyers working in several Ontario children’s hospitals on a systemic issues committee that “looks at bringing legal challenges to contest policy that discriminates against families with children with disabilities,” she says.

In Canada, “we tend to think equality means treating people in the same situation the same way,” Hannah says. “But sometimes equality requires treating people differently. This view of equality is called substantive equality. Because people have different needs and circumstances, we shouldn’t assume that just because they don’t follow what society normally requires of them that they are less capable or less deserving of respect and dignified treatment.”

Hannah has been onsite at the hospital two mornings a week since November, and has handled about 100 consultations with parents. She’s located on the main floor in the Family Resource Centre.

The service has had positive feedback, including resolving some cases where employers objected to a parent attending a child’s medical appointments. “When you have legal counsel involved, it tends to make employers accountable,” Hannah says. “They have a duty to accommodate to the point of undue hardship.”

Nadine Sunarich, social worker with Holland Bloorview’s child development program, has referred a number of parents to the service. “These clients have had issues related to immigration, Assistance for Children With Severe Disabilities funding appeals, family law, debts and unpaid taxes. They’re very grateful that this program exists and that it is onsite.”

In the past, Hannah worked as a defense litigator. She also volunteered in a legal-aid clinic for youth and in Pro Bono Law Ontario’s Child Advocacy Program, a free service that provides parents with lawyers to advocate for their child’s special education needs.

Since working with our families, “I’ve seen how resilient parents are in the face of adversity,” she says.

Holland Bloorview families who are struggling with a legal issue can e-mail Hannah at hannah@pblo.org.

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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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Simple questions that go unanswered

In May 2012 my son was approved for funding for a laptop at school. The desktop computer he previously had at school was so old that it didn't have functions he needed for computer science class.

I followed up about this computer but kept being told it was in the "system," which I understood to be going through some kind of government checks to ensure money isn't wasted.

Two days ago I met with some therapists who were going in to Ben's school on another matter. "I'm embarrassed to say that I don't know if he ever got the laptop he was approved for," I told them in advance.

Years ago we had a situation where Ben waited over a year for a computer he was approved for, and I e-mailed the superintendent of special education and everyone else I could think of for months, and followed up with calls, and stamped my feet, with zero effect.

The therapists who went into Ben's school yesterday confirmed that he does not have the laptop -- the one he was approved for 18 months ago. Apparently sometimes requests get "lost" in the system.

It seems to me that the process of funding and delivering computers to students with disabilities needs an audit. What is the average wait time for delivery of these computers?

Could any business operate by delivering products 18 months AFTER the request was made? And wait. We don't have delivery yet, and we don't even have an estimated time of arrival.

What is the point of approving a computer that is going to take more than 1 1/2 years to get into the classroom? Couldn't a child's needs change over that amount of time?

And during that 1 1/2 years, what happens to the dollars that were supposedly allocated to its purchase?

Simple questions, really. But ones that parents like me are too busy or too tired to keep asking.

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Parent despair is like a breaking dam: André Marin

Former Canadian Olympian Silken Laumann spoke movingly last night about stepparenting her daughter Kilee, 17, who has severe autism, at a BLOOM speaker event.

Silken was candid about the challenges the family has faced managing Kilee's meltdowns, which can cause her to lash out at others. She talked about losing caregivers who were injured by Kilee and said the family is fortunate to be able to afford both a worker for Kilee, and a person who acts as a bodyguard for the worker.

She questioned how parents who don't have this kind of support survive.

An investigation by the Ontario Ombudsman into over 700 complaints from parents of adult children with developmental disabilities who've been brought to their knees providing round-the-clock care to their kids suggests they don't.

This morning on CBC radio Ombudsman André Marin compared the situation of parents caring for adult children without adequate support to a breaking dam "holding back a rush of water. It can't hold the water."

He referred to a staggering number of parents in despair.

One of these is Amanda Telford, an Ottawa mother and social worker who dropped her 19-year-old son Phillip with severe autism off at a government office two days ago because she and her husband couldn't keep him safe.

"My husband and I are absolutely exhausted and medically unwell," she said, noting that her son functioned at an 18-month-old level, wandered away from the house and required 24-hour supervision. "I am not able to do this anymore."

Ombudsman Marin shared stories of parents who couldn't manage their adult children's complex needs, which sometimes included violent outbursts, on a 24-7 basis. He mentioned a mother who had locked herself in the basement and called 911 because her son was violent. She was told to call the police and he would be taken to jail, or to take him to the hospital. There were no long-term solutions offered.

Marin said many adults with developmental disabilities are living in nursing homes, psychiatric facililties and jail because there aren't appropriate living options for them in the community.

This afternoon Ontario's Liberal government tables its first budget under the leadership of Kathleen Wynne. 

Of interest will be whether the Ontario Disability Support Program (ODSP)funding has been cut, based on recommendations from a commission tasked with overhauling social assistance.

According to this article by Carol Goar in the Toronto Star, "Under the new system, there would be no distinction between disability support recipients and general welfare recipients. Under the current system, an individual receiving disability support gets $1,075 a month; an individual on general welfare gets $606 a month."

I was astounded that the Toronto Star was our only major newspaper covering this proposed change.

The ODSP is for people with severe physical or mental disabilities who are unable to work and require daily care. It's for families like the Telfords.

I messaged Carol Goar this morning to ask whether she thought the government would move on this cut. "I believe the premier has realized there’s too much opposition to any change in ODSP benefits to proceed," Goar said. "But it would be best to wait six hours and see what the Liberals actually do."

Doesn't your head spin sometimes, seeing the connections between these stories? 

Over 700 families are part of the Ombudsman's investigation and Marin suggests that's just the tip of the iceberg.

So how does it compute that we need to reduce funding support to families like these?

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Off in a corner

A dozen Ontario children who use mobility devices such as wheelchairs or walkers mapped their movement so that researchers at the Bloorview Research Institute could assess the accessibility of their homes, schools and neighbourhoods. Tablet PCs with Camtasia software were used to sketch the layout of their classrooms and illustrate some of the barriers they face (see example in video). The researchers built on these findings by surveying about 600 school-aged Ontario children with mobility disabilities to identify barriers and possible solutions. Results will be published in the next year. 

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All students deserve high standards, choice

It was a treat when Ben came home Tuesday night with a course catalogue for choosing his courses for Grade 10.

He has to take math and science and history and English – what you’d expect as part of any education – but he also has some choice in non-academic courses like construction technology and drama. The courses are part of a well-thought out high-school curriculum designed by the Ontario Ministry of Education.

The reason this was a treat was that for three years we have lived in the world of ‘alternative expectations’ – read no expectations – at the segregated school Ben attended.

Alternative expectations are courses that are not tied to the Ontario curriculum and tend to focus on life skills. They include speech, social skills, personal care and transit training. At the high-school level, they are non-credit courses.

"For the vast majority of students, these programs would be given in addition to modified or regular grade-level expectations,” reads The IEP – A Resource Guide from the Ministry. “A very small number of students who are unable to demonstrate even the most basic literacy or numeracy skills may receive only an alternative report."

Although Ben does read, and is now writing, for three years he received only alternative courses and an alternative report. In his last year the courses were things like art appreciation, gym, social skills (which was a cooking class) and ‘math’ – which involved tasks like putting flashlights together.

Four courses were offered per semester. They didn’t follow the general Ontario curriculum and my understanding is that they didn’t follow any Ministry-mandated content. It was up to the school to decide what it would offer.

The value of having a province-wide curriculum, I imagine, is that if students are taught the same material across schools, to meet one set of standards, you have a way of measuring progress and ensuring accountability.

I’m not sure why the same approach wouldn’t be taken with students with disabilities in segregated schools. Why would the same thought and energy not be put into developing a standard curriculum – ideally that draws on the general curriculum all students receive?

Why is it okay for students in these segregated high schools to have no Ontario-directed course content and no choice of courses and for students and parents to simply accept whatever learning is put forward in a particular class and school?

Last night I got to go through the standard credit high-school courses with Ben, in a document (above) aptly called: Life is the sum of all your choices.

Doesn’t it seem like there’s a double standard here?

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Every Kindergarten Kid Matters

Check out Every Kindergarten Kid Matters, a video campaign to ensure that Ontario's move to full-day kindergarten includes the supports and services needed for children with special needs. The campaign is spearheaded by the Ontario Association of Children's Rehabilitation Centres.

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Hospitalization costs

When my Dad was hospitalized last year, we quickly realized that our presence – or that of someone we hired – was necessary 24/7. My dad had no short-term-memory and became confused without someone to orient him. We hired a personal-support worker to sit with him at night.

The second evening, after receiving a diagnosis of advanced lung cancer, a nurse told me: “He may not make it through the night.” We were moved to a private room.

No one explained what to expect in terms of his death or how to comfort him. We were pretty much dumped; the only time we saw a nurse during that long night was when I went searching to beg for morphine.

If my mother and I hadn’t had our personal-support worker with us, I don’t know what we’d have done.

Those two nights cost $500. Afterwards, I wondered how on earth people managed the financial expense of having a vulnerable loved one in hospital for an extended period.

I now have some experience with that.

As you know, Ben had major hip and knee surgery on April 13. My husband and I took the week off. We took Ben home four days later. The next week we returned to work and had workers care for him at home from 9-4. It was then discovered that the hip hardware had dislodged and he had to have a second surgery to redo the hip on April 27. After that, he came to Bloorview where he was in a body cast for six weeks. He’s still at Bloorview doing the hard therapy it will take to get him walking again.

Ben is non-verbal and primarily uses sign language. I can’t imagine any parent leaving a non-verbal child alone in hospital – and certainly not one trapped in a body cast. We have three other children.

My husband sleeps at the hospital and during the week we have workers from 9 to 4. We have spent more than $6,000 in workers over the last 10 weeks.

We are not eligible for Assistance for Children with Severe Disabilities – an Ontario program to help parents cover extraordinary costs. It has an income cap of $63,421 for a family of four. However, even if we were eligible for this benefit, we would have spent more than the maximum $430 per month in the first week.

We do receive Ontario’s Special Services at Home funding – designed to get Ben into the community and provide parental respite. We are grateful for this funding, which gives us about five hours a week of worker support.

But our worker expenses over the last 10 weeks are significantly more than the annual amount we receive through this program.

When I asked the folks in Bloorview’s family resource centre about any other funding sources, they suggested I appeal to a service organization. No parent wants to ask a service group for charity.

They also suggested I call respiteservices.com, which is a group of agencies working together to provide comprehensive respite services in Toronto. I spoke to the facilitator who said she’d look into our situation, but that there weren’t any obvious sources to tap.

We are lucky. Our family has helped us. I've heard about families whose kids have been in rehab for months and gone bankrupt, lost houses, or had to sell businesses. The only way you can qualify for employment insurance – to take time off with your child – is if your child has a life-threatening condition. And that compassionate-care benefit covers only six weeks.

Nobody likes talking about money. But we need to recognize the true costs of hospitalization for kids with complex needs, even in our publicly-funded system.

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A cross-country quest for therapy

In 2006, Stacey and Jonathan H. uprooted their family from Ontario – where they had family and friends and Jonathan worked as a teacher – to Calgary, a province Stacey had never visited. The year before, their twins Will and Owen, 2, were diagnosed with severe autism and they were still on a wait list for publicly-funded applied behaviour analysis (ABA) therapy. The family moved west in the hopes of getting co-ordinated, provincially funded ABA intervention, and other services. I interviewed Stacey (above with Owen, middle, and Will far right, now 6, Jonathan and Jake, 8, far left) about how the family made this decision, and how they’ve fared.

Me: How did autism affect the boys when they were first diagnosed?

Stacey: They were both completely lost in their own worlds, non-communicative and had unusual behaviour. Will ate rocks and picked every loose thread out of our couch until it had to be thrown out.

Me: When did you realize you couldn’t get the ABA and other supports the boys needed?

Stacey: There was a wait just to get the diagnosis. I started voicing my concerns prior to their first birthday, but they didn’t have an assessment till they were two years and four months. They were deemed eligible for early intervention, but then were put on a wait list and nothing happened. I quickly recognized I had to surround myself with other parents of children with autism. We got involved with a group of parents and that’s where we learned about families whose kids had been on the wait list till they were age six, which was the cut-off in Ontario. We learned we couldn’t expect anything in terms of funded ABA services.

Me: What did you do for ABA services?

Stacey: We paid privately for 20 hours a week of ABA. For both boys, that cost about $7,000 a month. We wanted the boys to have 40 hours a week, but that would have cost over $160,000 a year.

Me: How did the lack of funded services and the financial pressures affect your family?

Stacey: It was devastating to feel like we couldn’t meet the needs of our kids. My husband felt like he couldn’t provide financially. I felt like I was an educated person, yet I couldn’t get through a day with my own kids. Because the boys were so challenging, doors were closed everywhere – even for things like babysitting or daycare. We had to reach out to family and friends for financial help. It was terribly humbling, and also humiliating. Revealing that we were in need made people uncomfortable. We lost many, many friends, but we also gained friends we didn’t know we had.

Me: When did you first think seriously about moving to find publicly-funded services?

Stacey: The tipping point came when a group of our friends held a giant fundraiser for the boys at a pumpkin farm. They sold tickets and had a pig roast and games and activities. Hundreds of people showed up and we raised $15,000. It was overwhelming and inspiring. But then I realized it would only cover one month of therapy and the boys would need help for the rest of their lives. It seemed a huge amount of money, but it was just a drop in the bucket. That put us into desperate panic mode to see if we could move to get funded services.

Me: How did you settle on Calgary?

Stacey: I didn’t realize at first that services were different from province to province. Then I read stories about families moving to Alberta. I made a call to a children’s hospital in Calgary and found out they were holding a resource fair for children with autism. All of the ABA service providers would be there. We couldn’t afford it, but I booked a plane.

At the fair, we were offered choices of government-funded ABA agencies that we could work with. In Ontario, we were on our own to figure things out with private providers, but in Calgary the agencies, the doctors and the government had co-ordinated their efforts to make sure everyone got the optimum program possible.

I found an agency that offered a government-funded, full-time ABA program that included half days at home and half days in a preschool, which was exactly what we wanted. The agency said that if our kids were eligible, we could sign up with them and they would help us through the process.

We moved in July, and I had a social worker in my home within a week, assessing our needs. We went before a multidisciplinary panel in August that oversees ABA services, and services for the boys began in September.

Me: Were there other differences in funded services in Alberta:

Stacey: In addition to specialized ABA services, the government puts an enormous amount of money into preschool funding for all children with special needs, so you can access preschool programs run by people who know how to work with our children. We were also automatically eligible for family support services, which included expensed funding for community, behaviour and respite workers. We even received funding so that our older son, who had had a hard time with the move, could receive counselling. Any extraordinary costs can be reimbursed.

Me: Why do you think there's a strong commitment to services for children with autism in Alberta?

Stacey: There’s a different mindset here. Early intervention is believed to be a right of children, and that if you intervene early, there won’t be such a financial burden on the province in later years. The other huge difference is the co-ordination of services. For example, when I met the social worker a week after we arrived, she immediately connected us with a pediatrician and a feeding clinic. All of the players here work together.

Me: What was the greatest challenge in moving your family?

Stacey: The biggest problem was leaving family and friends. They had not only supported us, but been a tremendous support to the boys. The likelihood of the boys forming their own support system in Alberta was slim, but at least in Ontario they had that built-in core group of family and friends that loved them.

The other major challenge was financial. As a teacher, my husband wasn’t going to make more money in Alberta, but the cost-of-living is higher. We sold our house in Ontario for $140,000 and had to buy a house that cost almost half a million dollars. We traded one expense for another, but at the end of the day we got the services for the boys we never thought we’d have.

Me: How has the move benefitted the boys?

Stacey: In every way. They don’t have parents who are living in constant stress. It eased the tone in our household. We’ll always have stress, but not the same kind of desperation, when you have no options.

In terms of intervention, I don’t like looking back to consider what their lives would have been if they didn’t have therapy. Four years ago, I had boys who wouldn’t look at me, who wouldn’t let me touch and hold them. Today I have little boys with challenges. Will and Owen have personalities, they experience emotion and they experience life with us and their brother.

Me: What is the situation like now for families considering a move to Alberta for services?

Stacey: We came at the perfect time, but in the last three years, so many people have moved here that the caseload has increased hugely. If you go to a meeting here for parents of kids with autism, half of them have come from Saskatchewan, British Columbia and Ontario. The numbers are so great that Alberta seems to be becoming pickier with their intake process. If your child is high-functioning, you may not qualify for specialized ABA services. Each family has to assess their own individual situation to figure out what’s best for them.

Stacey writes a blog about her boys at Willowjak – "our family of five, with autism times two." Willowjak combines the names of her sons Will and Owen, now 6 who have autism, and Jake, 8, who is typically developing.

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