Members meet with Valesky and Magee on Issues
(Oneida, Syracuse, NY – Dec. 2015) The Arc of Madison Cortland is participating in NYSARC’s “It Matters to Me Campaign” a grassroots advocacy campaign to share the personal stories and circumstances of concerned families and providers on the issues that matter most to people with developmental disabilities. NYSARC is comprised of 48 chapters across New York State including The Arc of Madison Cortland.
On Nov. 16 members of The Arc of Madison Cortland and Arc of Onondaga met with Senator David Valesky at his office in Syracuse and on Nov. 19, members of The Arc of Madison Cortland met with Assemblyman William Magee in Oneida.
At both meetings, family members of people with disabilities, self-advocates and board members, along with the executive director raised concerns regarding residential housing, employment opportunities for people with developmental disabilities, wages for direct support professionals and preschool issues.
Discussion on sheltered workshops or work centers raised a great deal of concern from family members and self-advocates. A work center is a work environment that employs people with disabilities at sub-minimum wage or on piece rate based on prevailing wage. Work centers provide training, vocational opportunities, counseling, and necessary supports for individuals with disabilities.
Governor Andrew Cuomo recently announced the Employment First policy, which is part of a national movement to support the employment of people with disabilities in integrated jobs, people with disabilities working side-by-side people without disabilities. As a result, the work center at The Arc of Madison Cortland is unable to accept applications from people with disabilities. This causes a great concern for parents whose child with a developmental disability may be graduating or transitioning from high school to a career and need vocational training and support.
“My son is just a few short months away from graduating from high school and we continue to worry about plans for him,” said Maureen Louis “I would love for him to at least have a start at the work center, but that’s not possible now.”
Louis went on to say her son who has autism volunteers two hours a week at a local library but that is not enough. Trying to develop a plan of appropriate services and supports for her son is extremely frustrating. Maureen expressed concern over the maze of paperwork and regulations.
“All I want is what is best for my son,” she said.
“I worry a great deal about my son feeling isolated in an integrated environment,” Louis said. “I want everyone to work in an environment where they can thrive and feel safe. We also need to be realistic. Give an employer a choice to hire a person without a disability versus a person with a disability who needs support, who do you think the employer will hire?”
James Jewett is a member of the Madison County Motivators, a self-advocacy group of more than 30 members, all with developmental disabilities. He spoke about how he worked at the work center for a couple of years and then tried working in the community at a grocery store. He said that he liked the job at the grocery store but at times he felt picked on; ridiculed, called slow and he thought co-workers took advantage of him. After he quit his job, he tried to return to the work center and was denied due to the new regulations. He said he liked working at the work center because he said he felt accepted and respected.
“Now I sit at home looking at the four walls,” Jewett said.
“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, not only for myself but for others with a disability as well. When I worked at the work center, I knew that security measures were in place. What are the safeguards for people with disabilities who work in the community?”
Jewett went on to explain that The Arc of Madison Cortland conducts background checks on all employees who have direct contact with people with disabilities.
Another issue that the group discussed was wages for direct support professionals. Direct Support Professionals are the people who provide hands-on care for people with disabilities that could include, feeding, bathing, toileting, transporting and additional activities of daily living.
Erica Ostwald, a member of the Madison County Motivators spoke about the importance of Direct Support Professionals and the essential role they play in her life and in the lives of others that have a disability.
“Throughout my life I have had so many different Direct Support Professionals that it is too many to count.” said Ostwald. “Every time they left I felt nervous and uncomfortable. As a person who depends on a Direct Support Professional trust is the most important element in our relationship.”
Erica went on to say she is concerned that good, qualified Direct Support Professionals will leave and go to work at a fast food restaurant where they will get paid more.
Jack Campbell, Executive Director for The Arc of Madison Cortland explained that New York State determines the amount a Direct Support Professional is paid, not The Arc of Madison Cortland.
“The state gives us a rate and we have to provide the service for that amount,” said Campbell, “I have the most respect for Direct Support Professionals. Their job is by far the most challenging and most important. There are many people with disabilities that depend totally on a Direct Support Professional just to survive.”
It Matters to Me Campaign is a grassroots effort organized by NYSARC, Inc. NYSARC is looking for families and people with developmental disabilities to share their stories and concerns about the future. Video statements from family members, self-advocates, and Direct Support Professionals are available for viewing at www.nysarc.org.