October is Autism Awareness Month

Safeguards needed to protect those with autism, paper concludes

BOWMANVILLE, ON (Oct. 4, 2010) – As Canada prepares to recognize Autism Awareness Month, Kerry’s Place Autism Services and ROCG have released a paper highlighting the need for more safeguards to protect those with autism and other intellectual disabilities. 

The paper cites the 2005 death of Tiffany Pinckney, a Mississauga, Ontario woman with autism. Tiffany died of starvation in her sister’s basement at the age of 23. After criminal court proceedings, a community review into her death made a number of recommendations to increase safeguards and prevent future tragedies. 

“We need to recognize that there are some unique challenges when balancing the rights, risks and responsibilities of caregivers and those who have Autism Spectrum Disorder,” says Leslie Yeates of ROCG, one of the authors of the report. “A sound ethical framework can help service providers to prevent similar tragedies.”

Kerry’s Place was established in September 1974 in Clarksburg, Ontario, by a group of parents frustrated by a lack of understanding and support service for their children with autism. The organization now serves the regions of Peel/Halton, Dufferin, Durham, York/Simcoe, Toronto and Hastings. Yeates worked on the paper with Leland Davies and Gail Jones from Kerry’s Place, as well as Patricia Hood MacNicol, an ethicist with the Trillium Health Centre.

“People’s health, happiness, safety and lives are at stake,” notes the report, which recognizes the need to respect personal autonomy and privacy while also ensuring protection. “We still have much to learn about how to respect rights and enable people to exercise their rights.” 

Autism is a developmental disability that typically appears during the first three years of life. It is a lifelong disorder that affects the development and functioning of the brain in the areas of communication, social interaction and behaviour. People with autism are sometimes unable to express their needs, which can lead to frustration and serious behavioural problems, sometimes requiring interventions which impact their ability to exercise personal rights.

“We must establish an environment where it is safe for people to openly discuss difficult topics, weigh options, and permit some level of risk,” the report concludes.

Kerry’s Place uses the principles of the Council on Quality and Leadership (CQL) to provide a framework that encourages such discussions.   

Advocates for people with autism are invited to participate in the planning process at Kerry’s Place. Participants use a series of questions to assess actual risks and to determine if restrictions are justified. Kerry’s Place also has a Rights Committee that assesses restrictions. The focus is on utilizing the intrusive clinical intervention models while ensuring the safety of the person, the support staff and the public. 

Tiffany’s death highlighted the importance of establishing a process that recognizes the right to privacy but allows intervention to protect people with autism. After the death of Tiffany’s mother and caregiver in 1988, her sister assumed the responsibility for her care. But Tiffany was soon isolated from social services. Some people who were close to her became concerned but did not know how to intervene. 

Tiffany’s sister was found guilty of manslaughter, criminal negligence causing death, and failure to provide the necessities of life. She was sentenced to nine years in prison. 

After the court proceedings, key stakeholders including representatives from developmental services, justice, health, education and the Office of the Public Guardian and Trustee (OPGT) met to discuss ways to increase safety for adults vulnerable to abuse and neglect.  

Copies of the report are available through ROCG by contacting Leslie Yeates at leslie.yeates@rocg.com.  

About ROCG  ROCG is the only international professional services firm that specializes in working directly with businesses owners operating Small and Medium-Sized Enterprises (SMEs). Our Business Transition Specialists work with entrepreneurs to build wealth at every stage in their business transition -- from Starting, Growing and Building Business Value, to Exiting the Business. Within the public sector, ROCG’s Performance Improvement Specialists work with governments, publicly funded organizations and community groups, helping them increase their organization’s efficiency and effectiveness, and achieve their organization’s overall vision, while ensuring a measurable return on investment and high level of accountability.