Get your kid active at Variety Village

By Louise Kinross

Check out this video of Rick Mercer spending a day at Variety Village, the fitness and sports club in Scarborough, Ont. for people with and without disabilities.

Variety Village’s physical design, accessible equipment and welcoming culture make it easy for kids and adults of all abilities to enjoy exercising.

Now the club is offering families who receive services at Holland Bloorview a great deal: a free four-month membership to children aged four to 12 years and two free programs—or a subsidized annual membership to families of children with disabilities.

E-mail Lindsay Mulock at lmulock@varietyvillage.on.ca to learn more. The offer ends Feb. 28!

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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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A teen's tips on raising great kids

By Abdi Hassan

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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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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Immigrant moms hit a service wall

York University researchers Nazilla Khanlou and Mahdieh Dastjerdi (above) share the findings of their study on the experiences of 30 immigrant moms in the Greater Toronto Area and their service providers. Rich findings about the barriers faced and how we can better support immigrant families were offered at this BLOOM speaker night.

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Immigrant moms hit service wall

Immigrant mothers face a brick wall trying to get services for their children with disabilities in the Greater Toronto Area, says one mom of a child with autism who's also a social worker and University of Toronto professor.

“I’m supposed to know how to get through, and I don’t,” said Charmaine Williams at the Mothers Speak Up! Café Scientifique at Holland Bloorview yesterday.

The event brought together mothers and service providers to discuss the findings of a York University research study into barriers facing immigrant mothers of children with disabilities.

Despite her professional qualifications and the fact that she speaks English, Charmaine described the health, school and social supports for families like hers as “a bureaucratic obstacle course.”

The York University research on 30 immigrant mothers in the GTA and 27 service providers found a long list of barriers: fragmented services across the city that are hard to access and get to on public transit; long waits; language barriers; employers who don’t accommodate parents who need flexibility to meet the needs of their child; poverty; and discrimination by service providers, especially in schools.

“The more visible a minority you are, whether it’s your language or you’re black, the lower the expectations of the school,” said Sharon Smith, a mom with two children with special needs who immigrated from Trinidad.

Sharon said it was harder to get appropriate services for her son with significant medical and developmental disabilities than for her son who was highly verbal and only had social issues.

"It's not just my race,” Sharon said. “It’s also discrimination based on the degree of disability. My older son is quite verbal with social issues, but the school has been very supportive. But it’s very difficult and a constant struggle to get school supports for my younger son with seizures" and more significant language problems, she said.

“It seems that they make a judgment on what value people like my disabled child will be to society in the future” she said, and allocate resources accordingly.

Yana Skybin, a settlement counsellor with YMCA Newcomer Services in Simcoe County and mom of three children with autism said “just speaking with an accent” can lead to unequal treatment.

“[Service providers] ‘downtalk’ to women, even those who speak English,” Yana said. “If you don’t know how people communicate [in this culture], they assume you don’t have any education. When [mothers] don’t understand the system or speak with an accent, they treat them as if they have a disability. It is not an equal conversation.”

Yana noted that when she immigrated to Canada from the Ukraine she didn’t understand the “politics and interpersonal skills” needed to effectively advocate here. “At first I was too direct.”

Gail Jones, director of community support at Kerry’s Place Autism Services, said government-funded services “are not set up for people who don’t speak English or French.”

She also noted that cultural differences in how disability is understood can make it hard for families to get what they need. For example, she told the story of a family that didn’t follow through on behavior strategies they were given for their child.

After a number of staff attempted to work with the family, they decided to change course. Instead of focusing on behavioural intervention, they helped the family develop a network of support with their faith community.

“As the parents saw people from their faith community accept this child and the disability, only then could they accept it,” Gail said. “Other professionals might have wrongly labeled the family as non-compliant, instead of being flexible in their understanding and support approach.”

A mother noted that in the Asian community referring to your child as having special needs “is losing face. So parents will make excuses. My child is shy. She’s fine, she’s just afraid to talk to strangers.”

An advocacy group representing 70 Chinese families with children with disabilities said they were unable to get government funding because their parent support group is conducted in Mandarin.

Many mothers who suspected their child had a developmental issue were not believed, they said, by health and other service providers. Sometimes their parenting skills were faulted.

“It took two years to get a diagnosis,” Yana said. In the meantime, she was instructed to go to parenting courses, where she found that “90 per cent of the parents had children with special needs.”

Many of the mothers became single parents when their husbands left.

In recounting her despair at trying to cope with her childrens’ constant meltdowns and disbelief from service providers—including being told one child was simply “spoiled—” Yana recalled “hitting the bathtub with my hands until they hurt.”

Social isolation added to the stress. “People don’t know how to talk with me about being a mom of a child with a disability,” Charmaine said. “Other parents avoid [us] and [my child] becomes invisible.”

Sheila Jennings, the Mothers Speak Up! project coordinator and a lawyer doing graduate research on the rights of moms and their children with disabilities to support, noted that attendance at government-funded ESL programs for adults posed a barrier because of strict attendance policies. A participant explained that when moms had to miss class to attend to a child’s illness or serious meltdown “they were kicked out.”

Sheila said moms were heroic in the perseverance and creativity they brought to their advocacy despite numerous barriers.

Many were unable to fill out forms or advocate effectively at school meetings because they didn't speak English well enough, and many didn’t have Internet access.

Charmaine noted that “the world wants us to keep caregiving private because they don’t want to be accountable for it. Caregiving needs to be recognized as paid work. We need policy reform to support women engaged in caregiving.”

In pointing to services that make their lives easier, mothers said their best experiences happened when information and services were coordinated and available under the same roof.

The research is led by York University researcher Nazilla Khanlou. The Mothers Speak Up! event was sponsored by the Canadian Institutes of Health Research Institute of Gender and Health. A full report with references will be distributed this summer. To receive a copy, e-mail owhchair@yorku.ca with "Mothers Project Report" as the subject.

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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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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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Too disabled? Not disabled enough?

It bothers me when criteria for services for kids with disabilities is so restrictive.

Recently we were referred to the local agency providing service for youth with intellectual disabilities. We wanted a consultation with a behaviour management person to see if we could reduce Ben's tendency to pick at scabs when anxious.

I was asked to send a copy of Ben's most recent psychological report. I was surprised when the intake person called back to say that they wanted to look at previous reports because Ben's scores might be too high to be eligible for their service.

The intake person said the agency only served youth with moderate to severe intellectual disabilities that place them below the 1st percentile. However, among the disability community, this organization is known as serving youth with intellectual disabilities period. When I asked my colleagues if they knew this provider only served a segment of this population, they did not.

I didn't have previous reports handy, so I had to contact the psychologist and sign a release consent to get copies. If I didn't work at Holland Bloorview, I would have had to make a trip to pick them up. Tomorrow my husband will take them into work to fax them.

Parents don't have time to play these games. My son requires a service and was referred to this agency by his developmental pediatrician.

It's amazing how many programs are closed to youth because they are either "too disabled" or not "disabled enough."

I guess we will wait while the agency's psychologist pores over these lengthy reports to see if he or she can find a way to exclude my son.

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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 mixed bag

Hi all -- Ellen at To the Max has a contest where American readers can win a $50 CVS pharmacy gift card by sharing game and play activities that promote their child's development. Many of Ellen's followers have shared their tips in the comments section.

Enjoying the small things is an exquisite blog where a mom of a new baby girl with Down syndrome recounts her experiences in words and stunning photography.

A couple of weeks ago, this question was posted on the BLOOM blog in reference to a post about inappropriate conduct that occurred at a private ABA centre.

If a person wanted to check credibility/incident reports on an establishment that is involved with special needs children, where do they call? Do all therapy centres and daycares have to be registered? And with who?
Here’s a response from staff at Bloorview nursery schools, which applies to Toronto and Ontario (readers elsewhere will need to check requirements in their jurisdiction):

All daycares must be licensed with the Ontario government and the results of inspection must now be posted for public view. There is a graph to show areas of compliance and non-compliance by percentage.

As for credibilty/incident reports, it is our understanding that the difference between applied behaviour analysis (ABA) and (intensive behavioural intervention) is that ABA settings are funded in such a way that they can accept payment through private-health insurance. Other than that, we think there is very little regulation. Both ABA and IBI programs should have a psychologist attached to them. If they don’t, that would be a red flag for parents.

The challenge for families is understanding which programs have checks and balances such as registrations to operate, annual inspections and reporting duties that can be accessed publicly. In the field of children's services, IBI-ABA services for children are relatively new. The number of not-for-profit programs has not kept pace with the profit-based programs and services. There are many private programs, schools and preschools around that 'specialize' in the services of IBI-ABA. As the non-profit options seem so limited, families they have to work with what they have. Parents trust that the service providers operate all parts of their program at the highest possible standards, using the most up-to-date methods and trained staff. We know this is not always the case.

The program spoken of in the blog was defined as private. However, if a parent was unsure of a program's status, our advice would be to:

Ask if the program/service has any provincial/state or city funding. A “no” to both probably means the program is private and has less formal public reporting structures regarding credibility/incidents. If the answer is “yes,” there is likely a way to check the history of a program. A parent would need to call the ministry or department the program is funded through (for example, Ministry of Health, Ministry of Children and Family, Toronto Children’s Services). For programs with no funding ties to tax-payer dollars, parents are on their own to ask the “what if” questions.

The conduct that concerned the parent in the blog could also be reported to the therapist’s respective professional colleges or universities.

In Toronto, the Geneva Centre for Autism can provide helpful advice to parents.

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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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