'It matters to me': Speakers advocate services for developmentally disabled

Kari Powers of Le Roy speaks during a legislative forum Tuesday hosted by the Genesee ARC and the Arc of Orleans.

Kari Powers takes great pride in her daughter’s achievements.

Morgan, 8, was diagnosed with autism in 2009. She received early intervention through the Genesee ARC’s Rainbow Preschool, and is now enrolled in a “6:1:1” elementary school program — six students, one teacher and one aide — in Monroe County.

“I can’t speak enough about how much these services help my daughter,” Powers, who lives in Le Roy, said during a legislative forum Tuesday at the Genesee ARC Community Center in Batavia. “She is doing so well.”

Her pride is tempered by worry.

Worry, that state budget cuts threaten educational, housing and other services for children like Morgan, now and as they grow into adulthood.

“There are so many children diagnosed with autism or learning disabilities who are going to need services down the road,” Powers said. “It’s just so important that the funding continue.

“It matters to me,” she added. “It matters to Morgan and it matters to every single person in this room.”

Powers was one of 18 parents, caregivers and self-advocates who spoke for an hour-and-a-half at Tuesday’s forum. It was attended by state Sen. Rob Ortt, Assemblyman Steve Hawley, and Jay Grasso on behalf of state Sen. Michael Ranzenhofer.

More than 100 people attended the forum, which was hosted by the Genesee ARC and the Arc of Orleans, which are in the process of merging.

Powers’ words echoed “It Matters to Me,” the title of a grassroots advocacy campaign organized by the local agencies’ state affiliate, NYSARC, Inc.

The campaign focuses on four issues:

—  Residential housing and other opportunities for people with intellectual or developmental disabilities who are living at home with aging parents or other caregivers;

— The conversion of workshops into integrated businesses, to ensure employment for people with developmental disabilities;

— Funding to boost wages for direct support professionals (DSPs) who serve people with developmental disabilities;

— Increased state funding for preschools that serve special-needs children ages 3 to 5.

Tammy Caldwell has worked for the Arc of Orleans for more than two decades, including the past 15 years at Rainbow Preschool in Albion. She said low wages and poor benefits, make it difficult to recruit and retain qualified employees.

“We have very dedicated staff,” Caldwell said. “They don’t come here for the money; they’re in it because they are truly passionate about their job and the kids they see. But it’s getting harder and harder, because of the lack of funding, to find … good staff who want to come to a rural community like Orleans County and Genesee County.”

Wendy Eden said the starting wage for a DSP — $9.66 an hour — is “shameful.”

“Recruiting has been the biggest struggle,” said Eden, a residential supervisor for the Arc of Orleans. “We deal with staffing shortages on a daily basis.”

Alexis Arthur, a DSP at the Genesee ARC Day Habilitation Center in Elba, said it is “outrageous” that fast-food workers in New York will be paid $15 an hour while many of her peers work second jobs to make ends meet.

“My job is very rewarding, and I have a deep sense of pride and gratitude that I get to work with the people I do,” Arthur said. “My only wish is for myself and my coworkers to be compensated for our hard work.”

Loretta Stratton, of Elba, said her life changed when her son Hank was diagnosed with autism at age 2.

She switched careers, and trained to work with children like her son.

“I thought I would be able to reach him,” she said. “And I couldn’t — I wasn’t able to reach my own child.”

Fortunately, help was available. Hank received in-home care, and attended preschool. By the time he started kindergarten, Stratton was in a position to insist Hank attend “regular” class.

By 10th grade he was taking Regents courses, and is now ranked third in his class. Stratton said he is Elba’s first special-needs student “in full inclusion” from kindergarten through senior year.

“We don’t want our kids to be a burden on society,” Stratton said. “We want to empower our kids to be the best that they can be at whatever ability they have.”

Hank is also an advocate, and spoke in support of job opportunities.

“We need people with special needs in the work force,” he said. “They really want to be a part of it, and they deserve the (same) respect as any other citizen.”

Hawley and Grasso said issues raised Tuesday will be part of negotiations when work on the 2016-17 state budget begins in January. (Ortt had to leave early to attend a public meeting in Barker.)

Hawley hoped advocates would take their case directly to Albany, and “hammer away” at Gov. Andrew Cuomo and legislative leaders via letters, e-mails and YouTube videos.

Will their voices be heard?

Hawley pointed to the career of former Assemblyman Harvey Weisenberg, a Democrat who represented Long Beach until last year. He has an adult son with a mental disability.

In 2013, Weisenberg led a successful bipartisan effort to restore $90 million in funding that had been cut from the state Office for People With Developmental Disabilities.

Hawley was among the Assembly co-sponsors of the legislation. Ranzenhofer cosponsored the Senate version.

“I’m always optimistic,” Hawley said.

Assemblyman Steve Hawley, R-Batavia, speaks during Tuesday’s legislative forum hosted by the Genesee ARC and the Arc of Orleans. Jay Grasso, left, attended on behalf of state Sen. Michael Ranzenhofer.