Divide and Conquer — A Class System of Care

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Dr. Olaf Developmental Pediatrician Olaf Kraus de Camargo tweets about #SpecialNeeds and #Disabilities … May 26 · 11 min read

Divide and Conquer — A Class System of Care When I see children referred for a developmental assessment they often have been waiting over 1 year to be attended. After we establish a diagnosis starts another struggle with waitlists and access to get the needed supports and therapies, especially once children do not fit a certain funding stream as determined by the Province. Some children have a special access to services in Ontario — those with a diagnosis of Autism. There is special program of services. An entire floor in our building is just dedicated to them. This translates into such surreal situations that some parents thank me profusely once I diagnose their child with Autism: Not because they are happy about the diagnosis, but because they feel, that at least their child has a better chance for services as if it had a different diagnosis or if we were unable to establish a clear diagnosis (as it happens in about 30% of children with a developmental disability). From my practical perspective, this is unfair towards the children without a diagnosis of Autism. I was wondering, if my perception is skewed and decided to have a closer look at the situation of children with disabilities in Ontario and how money is being distributed. This is a personal analysis and does not represent my employer. It certainly is incomplete due to the limited time I had over the long weekend to look up relevant information but it is also a reflection based on the information available for me as a citizen and a developmental paediatrician. Discussion, comments and corrections are very welcome! Having lived and worked in different countries with distinct healthcare and social welfare systems, I came to appreciate the equitable access to services I came to know and work with here in Canada. We do not have parallel private health care providers that suck in the professional talent from public services taking it away from the general population

that relies on those services as it happens in Brazil. We also do not have the two-tiered waiting lists for “private patients” (about 1% of patients that can afford a private insurance) as they are called in Germany. In Canada, no matter, if I see a child of an unemployed parent or of a well-off entrepreneur, they have access to the same services, investigations and treatments. I’m aware of the struggles with long waiting lists, especially their damaging effect in the case of developmental issues, where early intervention is fundamental and time of inaction works against the child. I would love to find solutions to reduce this burden on the children and their families and I am sure many of the people involved in developing new strategies and policies want the same. I also appreciate the excellent advocacy work done by many parents. But policies also are the result of politics and agendas that might not be as transparent as the problems everyone agrees to want to solve. They might consider secondary effects, for example on the electorate and easily can be geared towards the interests of those who protest the loudest or are the most numerous. So, what are the problems to be solved? The bottom line is to offer necessary services for all children with developmental disabilities. The first steps to solve this problem is to have a better understanding of what are developmental disabilities and of the magnitude of the problem.

Developmental disabilities: Under the term “Developmental Disabilities” we group a variety of conditions, including Autism, Cerebral Palsy, Down Syndrome, Fetal Alcohol Spectrum Disorder, Intellectual Disabilities of varied origins like prematurity, genetic and metabolic conditions but also milder learning disabilities like Attention Deficit Hyperactivity Disorder and Dyslexia. Many of those conditions are associated with mental health problems like Anxiety, Victimization of bullying, Sleeping and Eating disorders etc. On the website of Disability Ontario, we find the following definition: “A developmental disability is present at birth or develops before 18 years of age, affects a person’s ability to learn, is permanent, can be mild or severe.”

What Is A Developmental Disability? —  Developmental Services Ontario People with a developmental disability can still participate fully in their communities. They can be great athletes,… www.dsontario.ca

All the conditions mentioned above affect learning in some way, mildly to severely. Despite diagnoses not informing much about the needs of the individual children, they allow us to count how many children are affected and have a better idea of the overall need for supports. The number of people living with a specific condition is called the prevalence of that condition.

Prevalence of disabilities in Canada Statistics Canada only provides numbers for individuals over the age of 15 which might underestimate the real number of younger children struggling with their development and later improve having received early intervention and support services. Among the different types of disabilities listed by Statistics Canada, “Developmental” is the least frequent, although it is recognized that most of the people with a Developmental Disability will also present with another type of disability.

Canadian Survey on Disability, 2012.

Developmental disabilities among Canadians aged 15 years and… The Canadian Survey on Disability (CSD) is a national survey of Canadians aged 15 and over whose everyday activities are… www.statcan.gc.ca

Census families by number of children at home, by province and territory (2011 Census) (Ontario) Summary Table. Find data on census families by number of children at home, by province and territory (2006 Census),… www.statcan.gc.ca

Extrapolating the census data about disability for Ontario, we would expect that in our province live around 24,000 children with Developmental Disabilities, as defined by the census, based on the total number of children living in Ontario (4,000,000). This number seems very low, considering the known prevalence of some conditions:

Let’s have a look at the numbers: Autism: About Autism People with autism process and respond to information in unique ways. They can show a wide variety of symptoms and… www.children.gov.on.ca

According to Autism Ontario, there are about 70,000 people with autism. This is based on a prevalence rate of 1:200. More recent data from the CDC in the USA estimate the prevalence for Autism much higher, at 1:68. The population of Ontario is about 13,500,000. Taking the more recent and higher rate from the USA, we could therefore expect nearly 200,000 people living with autism in Ontario; 60,000 of those would be children. This estimate alone gives us already a number much higher than expected based on the Statistics Canada data.

Cerebral Palsy: a prevalence rate about 3:1000 — 12,000 children in Ontario

Cerebral Palsy | NCBDDD | CDC Cerebral palsy (CP) is a group of disorders that affect a person's ability to move and maintain balance and posture. CP… www.cdc.gov

Down Syndrome: a prevalence rate of about 1:1000 — 4000 children in Ontario

Data and Statistics In recent years, Down syndrome has become more common, and children with Down syndrome are living longer. Read below for… www.cdc.gov

FASD: a prevalence rate of 1:100 and higher has been estimated for Canada —  40,000 children in Ontario

FASD Fact Sheet - CanFASD The Canada Fetal Alcohol Spectrum Disorder Research Network (CanFASD) is a collaborative, interdisciplinary research… canfasd.ca

Learning disabilities: the Learning Disabilities Association Canada estimates that 1:10 Canadians have a Learning Disability, the equivalent of 400,000 children living in Ontario.

Putting a Canadian Face on Learning Disabilities (PACFOLD) and the Prevalence of Learning…

Since 1963, we have provided leadership and support to people with learning disabilities (LD), their parents, teachers… www.ldac-acta.ca

Distributing the money Adding up those numbers we reach a total of more than 500,000 children with developmental disabilities living in Ontario. The budget planned by the Ministry of Children and Youth to support these children and their families in 2017/2018 is: 517,360,600 CAN$ or about 1,000.00 CAN$ per child with a Developmental Disability.

Expenditure Estimates for the Ministry of Children and Youth Services (2017–18) The Ministry of Children and Youth Services ( MCYS) envisions an Ontario where children and youth have the best… www.ontario.ca

It is understandable that money is limited and that it needs to be employed in the best possible way to attend the needs of all children with developmental disabilities. The goal must be to develop strategies to provide better and quicker services.

Strangely, the only diagnosis with a dedicated budget is Autism. For each of the potentially 60.000 children with Autism, the government is spending 4,845.00CAN$ and for each of the “other” 440,000 children with developmental disabilities 515.00CAN$ will be spent. Not only will children with Autism and their parents receive 9 times more money than children with other disabilities, they can dispose of that money buying “private” services, so their children do not have to wait in line, as recently announced with the new Ontario Autism Program.

Ontario Autism Program The new Ontario Autism Program will make it easier for families to access services for their children by reducing wait… www.children.gov.on.ca

Understandably, this is praised by the representatives of those parents that have long fought to obtain more help for their children. Being the largest group, they had the loudest voice. “After 12 years of advocating for Direct Funding (DFO), the Ontario Autism Coalition (OAC) is pleased that Minister Coteau has listened, and committed the government to this funding model. DFO will give families greater choice and flexibility in service delivery at a fraction of the costper-child. Today’s announcement is a good first step, but much work remains to be done to build the new Ontario Autism Program. The OAC will continue to hold the Minister to his promise of service for every child based on need.”

Bruce McIntosh

President, Ontario Autism Coalition Strengthening one group leads to a division among the different disability groups and has the risk of leading to animosities instead of synergy and collaboration. If parents of the 500,000 children with developmental disabilities were all on the same page and pushing for

equity in their services, I am sure, their voter potential would be recognized much more. The statement of the Ontario Autism Coalition points out a very important aspect: “service for every child based on need”. If this is the goal, why do we need an “Autism” program? Why can’t all children receive services “based on need”? And why does “based on need” require the direct funding option?

Needs based services What means needs based? How do we determine needs? Over the last 16 years a system has been developed by the World Health Organization that can help in answering these questions. It’s called the International Classification of Functioning, Disability and Health (ICF). It was developed on the observation that having statistics about the number of people with a certain diagnosis in one country does not really tell much about how those people are actually doing. It does not tell, if they are independent, if they are mobile, if they can go to school or to work, if they have friends and if they are part of a community. The ICF is universal for any person and any health condition. It can be used to describe a functional profile. Based on this functional profile parents can determine together with their health care providers, which are the priorities for services and what are the goals to be reached.

CanChild In 2001, the World Health Organization (WHO) came up with a way to describe the individual stories of patients that… canchild.ca

If we want to have money distributed according to needs, we need to have a better idea of what these needs are and what is required to support the children and families with those needs. Instead, we are basing policies on unreliable statistics about children with disabilities, money is being distributed by favouring one large diagnostic group above the others and, what is the most critical aspect, incentivizing parents to buy private services for their children leading to a two-tiered system.

Effects of a Direct-Funding System: Interestingly, the announcement of the new Ontario Autism Program was made at one of the facilities of Monarch House which belongs to the CBI group. This group describes itself as the “largest provider of community healthcare services in Canada” and in 2009 its president Mr Szybbo explained the strategy of the company: Mr. Szybbo said CBI, which has about 1,000 employees, plans to continue to expand its existing core of services and diversify into new services “to the extent that the Canadian health care system continues to delist publicly funded services.”

Medical rehab provider bought from U.S. parent Canada's largest rehabilitation services provider, CBI Health, has arranged a management buyout from U.S. parent Select… www.theglobeandmail.com

“Delisting publicly funded services” is the natural political goal of a company that provides private services. It explains why it offers a platform for a government announcement. Why is it so lucrative to have a private healthcare service having such a growth? The private healthcare sector has the advantage to create its own market: At Monarch House, we provide the tools and therapies that make a difference in the daily lives of individuals and families, all under one roof. Referrals to our centre can be made directly by parents, educators, and health care professionals (e.g., Speech-Language Pathologists, Occupational Therapists, Psychologists, and Physicians) and no diagnosis is required to obtain services.

Our services may be funded publicly (through government funding), privately (parents/guardians and not-for-profit or charitable agencies/organizations), or through third-party reimbursement (employer or private extended health benefits plans). We work with you to design the best treatment program possible that fits with your family and your needs while striving for maximum outcomes.

Home | Monarch House Monarch House provides interdisciplinary, bestpractice based treatment services for individuals with developmental… www.monarchhouse.ca

This all sounds amazing, if it was a public funded program. The moment that any added feature, therapy block, diagnostic test etc. will reflect in greater financial gain for the provider, parents will be in the dire situation to have to make decisions to make the “choices” to “design the best treatment program possible” based on their available additional funds. They will have to rely on biased advice. The government money called “direct funding” is only a door opener into the private system of services for people with disabilities. Once they are in, additional services will be paid privately on top of the direct funded services. What will be the practical effects of that policy? 1. A greater pressure on psychologists and physicians to make a diagnosis of Autism, as this gets them access to direct funding 2. A further increase of the number of diagnoses of Autism 3. An even greater demand for private services 4. Private providers will start hiring more staff, leading to a depletion of staff that works in the existing Children Treatment Centres, causing a further increase of the waiting lists at those centres 5. The public services will be underfunded, with more money being streamed to direct funding, not able to compete anymore with the demand that has been created 6. Extinction of the public services offering unbiased expertise and support 7. Once only private services exist, those companies will determine what type and amount of service a child/family will receive and then children whose parents are better off will get more services and it will be unfair for everyone, regardless of diagnosis. My fear is that the Ontario Autism Program is only the beginning of the end of universal and public healthcare leading us to a class system of care. It is time for parents to unite across types of disabilities and diag-

noses to fight for the common goal that ensures all children to receive services based on their needs.