Disabled, advocates share their hopes, and struggles, with state lawmakers


ONEIDA — Members of the Arc Madison Cortland and Arc of Onondaga met with Sen. David J. Valesky in Syracuse and Assemblyman William Magee in Oneida in November to discuss the Arc’s participation in the It Matters To Me campaign.

“Both Senator Valesky and Assemblyman Magee were very receptive during their meetings,” Arc Public Relations Director Christine Sears said. “Everyone present appreciated their listening to our concerns and personal stories.”

The campaign is a grassroots advocacy movement which addresses the issues that matter most to people with developmental disabilities. It shares the personal stories and circumstances of concerned families and care providers.

Discussions included residential housing, employment opportunities for people with developmental disabilities, wages for direct support professionals and educational issues.

James Jewett spoke about leaving his job at the Arc’s labor center and trying to work at a community grocery store. He liked the grocery job but often felt picked on by co-workers who would ridicule and take advantage of him. Jewett quit the grocery job and tried to return to the work center, but was denied because of new state labor regulations.

“Now I sit at home looking at the four walls,” he said.

Those regulations are part of New York State’s Employment First policy, which is meant to integrate people with disabilities into the workplace alongside people without disabilities. As a result, the work center at the Arc of Madison Cortland is unable to accept applications from people with disabilities.

“I should have the choice of where I want to work,” Jewett said. “One of my biggest concerns is security and feeling safe in the community. This is not only for myself but for others with a disability as well. The work center has safeguards in place.”

Workplace concerns carry over to parents of the disabled who are close to graduating high school, and will transition to vocational training and, hopefully, a career.

“My son is just a few short months away from grading high school, and we continue to worry about plans for him,” Maureen Louis said of her autistic son. “I would love for him to at least have a start at the work center but that’s not possible now.”

The Louis family is frustrated in their attempts to develop a plan of appropriate services and supports for their son, with Maureen expressing concern over the maze of paperwork.

“All I want is what is best for my son,” she said, but like many is faced with a series of daunting applications and regulations.

Another concern is the pay scale for direct support professionals. These workers provide daily care for disabled individuals including feeding, bathing and transportation.

“Throughout my life I have had so many different direct support professionals that it is too many to count,” Erica Ostwald said. “Every time they left I felt nervous and uncomfortable. Trust is the most important element in (my relationship with these workers).”

Ostwald said she is concerned good direct support workers will decide to work at fast food restaurants where they may soon get paid substantially more.

Arc Executive Director Jack Campbell said the pay rate for direct support professionals is set by the state.

“I have the utmost respect for direct support professionals,” Campbell said. “Their job is by far the most challenging and important. There are many people with disabilities that depend totally on them just to survive.”

The Arc is looking for people with disabilities and their families to share stories and concerns about the future. Video statements from family members, self-advocates and direct support professionals may be found at www.nysarc.org.


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