She’s ready but it’s hard!

Maddie has moved into a shared house with two friends! Her roommates, Karen and Krystal, had been living together for more than a year in a rented apartment with a “House Mentor”. When the lease came to an end, Krystal’s mom bought a house to provide more long-term stability for her daughter. The house was bigger and they invited Maddie to move in with them. Although we’ve been talking about independent living for several years, the invitation felt sudden to all of us.

Maddie's room 2016We liked the model the two families had established, with the help of Lights Coordinator, Laura Starret. They had done the hard work of hashing out systems, budgets and  the responsibilities of the House Mentor. We had many meetings and email conversations with the other parents. Maddie visited the house several times and explored the neighbourhood. She had dinner with Krystal and Karen and talked about what it would be like to live with them.

For us, the House Mentor was key to making a decision but the wonderful young woman who had supported Krystal and Karen had decided not to renew her contract. On the advice of Laura Starret, we decided to take part in interviews for a new mentor as a way of making a more informed decision about the move.

The House Mentor position is a tricky role. Krystal’s mom, Madeleine Greey, has described it beautifully in an article for Canadian Living. Our job ad asked for someone to work approximately 10 hours a week to take part in two to three (no-cost) household meals, coach residents on household chores and errands, oversee safety, conduct household meetings and communicate regularly with the parents in exchange for significantly subsidized rent, unlimited internet, free utilities and laundry. We found someone. All the pieces of the puzzle fell in place and it was time to make a decision.

At a family meeting, we asked Maddie if she was ready to move in. She gave us her standard answer to hard questions, “I don’t know.” Her dad responded by writing, “Yes” and “No” and asked her to circle one. She took the pen. She took a deep breath. She wrote, “I’m ready, but it’s hard.”

She moved in two weeks later. Then we fired the House Mentor….



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Housing–the next big step

It turns out that finding housing for a young adult child isn’t just one problemclip-art-neighborhood. It’s really two HUGE problems. At least that’s what Bryan Keshan, CEO of Reena, has helped me understand.

As a parent, I want to find housing that is suitable, safe and affordable–problem one. And we need housing that offers appropriate levels of support–the more thorny and more expensive problem.

Problem one: The house

Waiting lists for subsidized housing are decades long. Some of us have been talking about buying a house, condo or other building. But there are so many issues: affordability, co-ownership, maintenance, landlord/tenant issues….And as one wise parent said, “Why are you trying to set your child up for the rest of her life? She might want to move. More than once.” Renting is starting to look appealing.

Problem two: The services

Maddie is growing and learning all the time. It’s highly likely that she will be able to live quite independently one day, as several of her friends already do (like Alex!). But just to get started, she will need help. Trouble is, the services available are quite limited–to a few hours a week.

The idea: Pooling our Resources

So we came up with an idea: a group of families could rent shared accommodation and pool government-funded and family resources. If the group was willing, we could make the house accessible to young people with different financial means by balancing individual contributions between market rent and ODSP allocated amounts. Each family would commit to offer a regularly scheduled activity or service to the entire group (e.g. communal meal, shopping trip, recreational activity) according to their skills and talents. Because the group would rent a private sector residence, the landlord would be responsible for overall maintenance.

Using existing community services, the young people could develop the skills they need to live as supportive roommates and share the funded support hours they are each entitled to have from Passport or from agencies like Community Living or Lights. We would help our kids develop the daily living skills they need, using the excellent STEPS To Independence course developed by Community Living.

Now all we need is courage!

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Province to close sheltered workshops

Maddie Lemon and AllspiceI couldn’t decide whether to weep with rage or despair over the Toronto Star’s recent series on sheltered workshops. This week, the headlines crowed that “the Star gets action” because Minister of Community and Social Services Helena Jaczek promised that she would close sheltered workshops permanently. This week, Ministry official Barbara Simmons said that change will unfold “one individual at a time,” as workshops are gradually replaced by agencies that find jobs, volunteer work and other activities in the community. “No one will be left without services, she promised.”

The Star cited examples of US jurisdictions like Vermont which closed workshops some time ago. The results? The Institute for Community Inclusion (UCEDD) found that in 2012, 25% of people with cognitive disabilities in Vermont were employed for an average of 16 hours per week. (Non-disabled people work 38 hours.)

What do those adults do the rest of the time (while their parents go to work)? They use “Medicaid waivers” to pay for services or they attend Adult Day programs – those “segregated” places the Star abhors. Once the last Vermont workshop closed, it took 3 years for 80% of the remaining clients to find mostly part-time work. Today, 35% of intellectually disabled people in Vermont live below the poverty line.

Closing doors doesn’t constitute action. A 2011 WHO report recommends that governments provide incentives and support for individuals with disabilities to seek employment and for employers to hire them. It argues for vocational guidance, training and employment services that are accessible to persons with disabilities—the same kinds of programs that the Star slammed last week.

Here’s an idea! Maybe the Ontario government could offer direct employment to this “fantastic population” in the provincially-funded civil service, school boards, and hospitals and health organizations. And since the Star “got action” maybe they will live up to their Atkinson Principles and “take action” to actively recruit and hire people with intellectual disabilities to join the Star Media empire.

Luckily for Maddie, the doors of Common Ground won’t close any time soon. Executive Director, Jennifer Hope, managed to get an “Employment” designation in the Ministry’s lists for their social enterprises. But Common Ground is exactly the kind of agency the Star targeted in its series.

Maddie’s workplace is “sheltered” by job coaches who teach skills and organize the catering business that partly sustains the program. Maddie earns a share of the profits—slave wages according the Star. But if she earned more, she would lose her Ontario Disability Support allowance—not in itself a living wage. It’s “segregated” (= Bad to the Star). To Maddie that means she works alongside peers who are true friends, not just co-workers who are polite to her. (Interesting that no one ever complains when gifted kids are segregated.)

Of course we hope that Maddie will one day find competitive employment. She is well-trained as a prep cook and has been actively looking for restaurant work with a job coach for four months. There are very few employers like the many Tim Horton’s franchise owners who are always cited as the better option by Ministry people and The Star.

When 80% of beds in psychiatric hospitals were closed in the 1950s and 1960s, it took nearly twenty years for the powers-that-be to realize that the resulting disaster could have been prevented if they had invested in community services first. Here we go again.

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March of Dimes Employment Support

Officially, the March of Dimes serves people with physical disabilities. However the organization’s Employment Services are open to people with any disability including developmental delays, mental health issues, learning disabilities, hearing and vision impairments.March of dimes

Interested participants must register for and attend an orientation session, after which they are assigned to an Employment Specialist. This counsellor will work with them individually to assess skills and establish a job search plan. The job search plan might include attending workshops to develop resumes and interview skills or may include a work trial. Staff will then help people find a job and retain the job by being available to help with problem-solving and asking for accommodations for the disability.

March of Dimes has a team of job developers who work to identify jobs before they are openly advertised. They are also able to connect people with job coaches.

The program seems best suited to people who are eager to develop a clear plan and are motivated to work one-on-one with a counsellor to find work.  The Toronto office is at 10 Overlea Blvd.  Telephone 416-467-2002 x 7226 to register for orientation. Apparently 80% of people served last year found employment!

Has anyone used this service? What was your experience?

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Friendly Housemates–Information night Tuesday, August 4

Community Living, in partnership with Lights has developed an innovative pilot project to match people with disabilities with a developmental services student in a shared living situation. Find out more at the information night on Tuesday, August 4.

Networking Evening Flyer Aug 4

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Graduation day! Culinary Arts program Christian Horizons and Humber College

The Culinary Arts Program led by Christian Horizons and Humber College Maddie grad IMG_20150608_195612_editwas by far the best post-secondary experience Maddie has ever had. The job coaches worked very hard to find suitable restaurant placements for every student. Students were placed in restaurants ranging from The Pickle Barrel to the Park Hyatt. Maddie wanted to be close to home and was placed at Insomnia Restaurant, where she worked in food preparation three days each week. Her job coach, Shannon Buller, visited every week or two to see how things were going and to work with Maddie and her supervisors. During the in-class sessions, Maddie developed “soft skills” with the Christian Horizons instructors who focused on Smart Serve, First Aid, and safe food handling. Every Saturday, Maddie practiced food prep skills with the Humber College chefs.

job coaches IMG_20150608_174248

Maddie with her job coaches and classmates

The 13 graduates of the pilot program were honoured tonight with a delicious dinner and lovely ceremony at Humber College. Applications are now being accepted for September. If you think your young person might like to develop some culinary skills, apply now! Find out more from this Global TV presentation!

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My Pub Night Hero

Julia Ouellette is my hero. For several years, she has been organizing and facilitating a monthly Pub Night for young adults with developmental delays. Over the whole year, the entire group includes 20-30 young people and a handful of siblings, who look forward to meeting at the Brass Taps to chat over dinner and drinks. brass-taps1

It’s a large, lively group and not everyone is great at managing money. But over the years,  Julia has worked out the kinks. She sends email reminders to make sure everyone understands how much a meal and drink will cost. She encourages participants to keep track of what they order and reminds them to ask the wait staff if they need help remembering what they owe. On a few occasions, the last to leave were stuck paying the shortfall when others didn’t pay enough. Julia started asking everyone to bring $25 cash.  That way no one will be short-changed (ideally) and cash is easier for the hard-working staff to process  than 25 individual bank or credit cards.

Pub Night is a red letter day in Maddie’s social calendar. She looks forward to seeing her friends and, at the same time, she is learning to navigate the adult social world–with generous support and regular coaching about how to behave in that world.

Learn from Julia, my Pub Night hero, and consider organizing a regular social event in your own community!

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