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.
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.
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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