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March 22, 2013

THE CANADIAN AUTISM SPECTRUM DISORDERS ALLIANCE (CASDA) WORKING TOWARDS A PARTNERSHIP WITH THE FEDERAL GOVERNMENT

A PROPOSAL TO ADVANCE A NATIONAL AUTISM SPECTRUM DISORDER (ASD) STRATEGY

Issue

There is an urgent need for our Federal Government to develop a comprehensive National ASD Strategy. Together with the provinces, action must be taken to improve our collective understanding of this disorder, share best practices on treatments, raise awareness and respond to the immense challenges faced by Canadian families caring for their children with ASD.

The Canadian Autism Spectrum Disorders Alliance (CASDA), led by Autism Society Canada, Autism Canada Foundation and Society for Treatment of Autism, is ready to partner with the Federal Government to ensure that such a plan is developed and implemented.

Situation

We must base our statistics on foreign countries like USA and Britain, because no statistics are available for Canada. Based on that, we estimate that Autism Spectrum Disorders are now being diagnosed in 1 in every 88 children in Canada. Once considered a rare disorder, these numbers are alarming and present serious implications both socially and economically for our country.

Discussion

Surveillance

Surveillance is the Public Health Agency of Canada’s (PHAC) mandate. We need the PHAC to do autism surveillances.

In November 2006, the Honorable Tony Clement, then Minister of Health, announced a package of initiatives, which included a “consultation process to inform the development of an autism surveillance program”. Consultation to inform this development was undertaken between November 2007 and May 2008. In December 2008, the Minister approved a contribution of $147,869 to Queen’s University to expand their existing ASD surveillance system. To date, there has been no announcement from the Minister of Health or PHAC on the status of this work.

The federal government has the key responsibility for public health issues. Currently the Canadian government has 347 FTE PHAC employees working with “Surveillance and Population Health Assessment” which includes some of Canada’s best epidemiologist. Some of this wealth of expertise needs to be directed towards autism.

PHAC has proven its commitment to being accountable for their methodology and results, and making their results accessible to the public. For this essential data to be comprehensive and credible it must not be outsourced.

Best Practices

The Health Department has historically set the pace in identifying and monitoring best practices and disseminating this information across the country. It is critical that we work together to facilitate broad and accurate communication of best practices for autism. Some of the areas for best practice identification should include early screening (i.e. twice before the age of 18 months), treatment options, the use of seclusion and restraints, educational and communication techniques, transition planning and successful independent living for adults.

National Pace Setter and Facilitator Role

The federal government is in a unique position to be the National Facilitator engaging the provinces and territories. The federal government can set the stage and maintain the momentum for a national agenda for autism. Precedence for this exists through, for example, Health Ministers’ Conferences or the introduction of items at First Ministers Conferences.

At present families are migrating across this country to provinces that provide, or are perceived to provide, better care for their family member with ASD. This has many implications on all Canadians.

The challenge before us is to find effective ways to leverage the strengths of our federal/provincial system to advance the autism agenda in Canada so as to provide consistency in information, treatment and services.

Health of Aboriginal Canadians

The federal government has the lead role as a health care provider for the aboriginal community. These Canadians need better ASD specific care for their children that are diagnosed with an ASD. This includes treatment options, supports and services across their lifespan.

Research

A significant increase in ASD specific research funding, with a focus on prevention and treatment, is urgently needed. There is not yet a known cure, prevention strategy or cause for ASD. Within this context, we must continue to do research and evaluation to support the pursuit of best practices in intervention, while also participating in the activity to discover the most likely factors causing this disorder. CASDA would like to see aggressive study into the area of environmental triggers working in the presence of a genetic predisposition.

If we look at the ASD surveillance performed in the region of Montérégie, Québec by the Public Health department serious questions arise in response to the 25% increase in prevalence year after year. Clearly, research into the causes and better treatment options must be a priority.

Financial Assistance to Families

The Income Tax Act should be reviewed so that expenditures for treatments and services for their family member with an ASD (recommended by licensed professional including pediatrician, Psychologist, Occupational Therapist, Speech Pathologist etc.) will be recognized as a medical deduction on their federal tax return. Families with a member with an ASD perceive that they are being audited with greater than average frequency. Their lives are fraught with a continual need to fight for their family member’s needs. They cannot be left to fight the government too.

National Awareness Campaign

Autism Spectrum Disorders have received considerable attention in the media, and public funding, in recent years. Despite this, there is a pervasive lack of reliable information in the general population. If we are to ensure that this group of Canadians is indeed valued and able to exercise their equal rights as Canadians, we must ensure that all communities are sufficiently informed about ASD so that they can reach out to their citizens and include them as valued members of society.

Summary

CASDA is well placed to work with the federal government, including the Public Health Agency of Canada, to advance a national ASD strategy. CASDA, representing a unified voice among the Canadian ASD community, is prepared to work in partnership with the federal government ministries to achieve a comprehensive plan to address the needs of Canadians with an ASD. We are ready to work with you and will provide whatever assistance we can to enable the development of a National ASD Strategy.

It is CASDA’s request that the Minister of Health seize the opportunity to champion a National ASD Strategy in collaboration with the provinces. Canadians expect national public health issues to be addressed by the federal government with options and solutions tailored for Canadians.

Together we need to revisit the Senate Committee report “Pay Now or Pay Later” and review all the recommendations thoroughly. We must ensure that these recommendations are being implemented or implemented better. Ultimately, we need to do this to ensure Canadians with an ASD receive the treatments, services and supports they need expediently so they can reach their potential and live fulfilling lives.