Local leads the fight for those with disabilities
WESTPORT— Legally blind since 2005, James Ross, a 54-year old electronic equity market architect, used the commuter bus regularly to get to his job at the New York Stock Exchange for years. Ross’ 13-year-old daughter, Olivia, suffered a stroke when she was 1 and still suffers from its effects; his 11-year-old son, Emmitt, has epilepsy.
When Emmitt entered grade school, his epileptic seizures required someone on hand to administer Diastat, the drug that stops seizures, but state statute limited the role to trained medical professionals. After long discussions with Westport School District officials about allowing a nurse to ride on the bus to and from school with Emmitt, Ross’ request was denied. He decided he needed to make a policy change happen to protect his son’s health.
Ross, a champion for the disabled, is the chairman of the newly formed Commission on People with Disabilities, which met for the first time in January.
His advocacy, along with work from state Reps. Kim Fawcett, D-133, and Jonathan Steinberg, D-136, led to the eventual passage of H.B. No. 6288 in 2015. Introduced by Steinberg, the bill enables nonmedical professionals, who volunteer to undertake proper training, the ability to administer emergency medicine to children with epilepsy. Initially introduced in 2012, the bill hit some roadblocks along the way, prompting Ross to start the Partners in Policymaking class — administered by the Connecticut Council on Developmental Disabilities — that teaches people to become more effective leaders in shaping policy for those with disabilities and their families.
“My wife and I were fully committed to this, and in doing this it gave me an immersion in policymaking in issues of disabilities and gave me the ability to work with other disability advocates, and that really connected me in a personal way and allowed me to learn in an environment that was supportive and kind,” Ross said.
“At the end of the day, I am highly certain that what we drafted is a highly crafted quality piece of legislation,” he said.
Goals of the Commission on People with Disabilities (via James Ross’ PowerPoint presentation)
Town adviser: To assess, advise and assist Westport elected officials, the ADA coordinator and other town employees on town policies, procedures, plans, services, programs, activities and facilities of the Town that affect people with disabilities.
Information center: To provide information and guidance to individuals, town businesses and organizations on all matters related to disability.
Community support: To foster and promote a community partnership and dialogue about issues and opportunities involving people with disabilities with businesses, private organizations, clubs and associations.
Awareness: To increase townwide communication and awareness about issues and opportunities which affect people with disabilities.
ADA compliance: To ensure compliance with federal and state laws pertaining to people with disabilities.
Engagement: To engage and involve people with disabilities and their families to participate and contribute to town government and planning.
After completing his Partners in Policymaking class, Ross worked with then Human Services Director Barbara Butler and current director Sarah Heath to establish the Commission on People with Disabilities, an ordinance unanimously passed by the RTM in July.
The seven-member commission was vetted by Ross and the Human Services Department, and appointed by First Selectman Jim Marpe. “We know at least 15 percent of Westporters have disabilities and, as a result, this is as large of a segment of our population as seniors or students, so this is a group that deserves attention,” Marpe said.
Three of the commission members either have a disability, have a relative with a disability or are a member of a nonprofit group aimed at helping the disabled.
Westport joined towns including Berlin, New Britain and New Haven in establishing such a body. The other six members are Marina Derman, Diane Johnson, Stacie Curran, LuAnn Giunta, Tom Holleman and Evan Levinson.
“The goal here is to enhance every level of a residents life cycle, from recreation to employment to transportation. We’re looking to ensure that people with disabilities can enjoy lives of independence, inclusion, productivity and self-determination. We want to make sure people have the opportunity, but also the support,” Ross said.
“This is civil rights at its very heart. ... Clearly, people with disabilities have had trouble with their voices being heard. When we think of how people with disabilities have been treated, we can do better,” he said.
Assistant Human Services Director Elaine Daignault, who serves as the municipal agent for people with disabilities, will be the point person between human services and the commission.
Heath said her department will provide staff support, help with the agendas, copies and paperwork and respond to any needs that people bring up at the meetings.
The next meeting of the Westport Commission on People with Disabilities is scheduled for Feb. 16.