This is a special guest blog post by our Executive Director, Alanna Hendren, on the Autism Treatment Acceleration Act and the differences between Canadian and American efforts in creating positive change for people with developmental disabilities.
The Healthcare debate in the U.S. is bringing forth legislative amendments and new bills that will strengthen the American medical/social safety net. Comprehensive autism legislation has also been introduced in the Senate and the House of Representatives.
Called the Autism Treatment Acceleration Act (ATAA), the bill creates a demonstration project to develop Autism Care Centers in order to provide a single point of coordination and services for families and their relatives with autism. A ‘personal primary care coordinator’ will be selected at the Centers to act as a fixed point of responsibility for families, who will have access to a full array of medical, behavioral, mental health, educational and family care services – all at a single center. Families will also be able to access services in the community such as post-secondary education, vocational training, employment, residential services, housing, health and wellness training, recreation, social activities and transportation.
The bill also creates an Interdepartmental Coordinating Committee to coordinate government activities related to autism, such as research, services and programs at the federal, state and local levels. A national data repository will also be created to share best practices, research findings, effective treatments, and so on.
Most importantly for American families, the bill will also require that health insurers cover the diagnosis and treatment costs of autism spectrum disorders with no maximum caps on spending per year or per lifetime. Covered treatments include: ABA therapy, medications, occupational therapy, physical therapy, speech therapy, family support, psychiatric/psychological services, professional counseling, communication devices, and structured behavioral programs.
Services to people with other developmental disabilities are not covered specifically in this legislation, but Congress is ensuring that “reform of the health care system in the U.S. responds to the basic needs of people with disabilities by making certain that health care coverage is available and affordable to all people with disabilities without pre-existing condition limitations.” This will prevent people with disabilities from having to liquidate their assets or stop working in order to qualify for services under Medicaid. Incentives within legislation also encourage and reward state expenditures on community-based versus institutionalized services.
The need for qualified, trained staff is also included in proposed legislation and recognized in the allocation of stimulus funds. This is in stark contrast to the ‘dumbing down’ of qualifications we have experienced in B.C. over the past few years, particularly in adult services.
The current contrast between American and Canadian efforts related to autism and disability services are stark. Here, there are no federal programs or initiatives regarding autism or developmental disability services and no incentives for provinces to provide services either. Rather than locating in ‘centers of excellence’, funding in B.C. has been given to individual families to purchase services from people who may or may not have the skills to provide them. Most families cannot afford to purchase the services their children need. Once they are adults, people with autism in B.C. will be added to already-long waitlists held by Community Living BC (CLBC) if they qualify.
Effective February 2010, CLBC has been mandated to provide services and supports to adults with autism (regardless of IQ, based on functional assessments) and Fetal Alcohol Syndrome, but the funding allocated will be insufficient and there has yet to be a plan released regarding how the needs of these unique populations will be met, particularly in an environment of budget cuts across Ministries.
During the economic good times that others have enjoyed in B.C. and Canada in the past decade or so, there was no money for child care, social services, housing, people with developmental disabilities, or to alleviate child poverty. Disadvantaged groups became more disadvantaged. In the U.S. at least they have now realized that investing in children, families and people with disabilities is the right thing to do, even during their worst economic recession since the Great Depression.
Canadian legislators in the meantime are content to download all responsibilities to the provinces, which in turn download to entities like CLBC who, without appropriate resources, download all responsibilities back to families. Unlike the Olympics, there have been no federal subsidies for people with disabilities and unlike policymakers south of the border, there are no federal champions for legislation that would benefit people with autism or other disabilities. We can only hope that the enthusiasm and optimism currently experienced by families and self-advocates in the United States will one day find its way north, to a country that used to be a world leader in humanitarianism and compassion.