Families of disabled adult children meet at state Capitol

By Denise Coffey - Staff Writer
Statewide - posted Mon., Feb. 10, 2014
Wethersfield cheerleaders stand behind state Rep. Mike Demicco, state Sen. Beth Bye and Jonathan Slifka, Governor Malloy's liaison to the disability community. Photos by D. Coffey.
Wethersfield cheerleaders stand behind state Rep. Mike Demicco, state Sen. Beth Bye and Jonathan Slifka, Governor Malloy's liaison to the disability community. Photos by D. Coffey.

Family members of individuals with life-affecting disabilities were given the floor to share their concerns with legislators in Hartford on Feb. 7. Armed only with their stories, they sought to shine a light on the crisis they say is looming for a population that has been all but voiceless.

The two-hour informational hearing was so crowded that an overflow room had to be used. Even with testimony limited to three minutes per person, there wasn’t enough time to hear everyone. Additional written testimony filled a box. State Sen. Beth Bye (D- 5), who co-chairs the caucus, said it was the first time in eight years that there weren’t enough seats for the legislators.

Joseph Duffy, who has a 30-year-old daughter with disabilities, said families had come to Hartford from across the state with one voice. “This is a public health emergency, especially in the area of housing,” Duffy said.

He was referring to the more than 3,500 individuals waiting for services and support from the state’s Department of Developmental Services. There is little money available. What little there was fell victim to cuts in the last round of budget negotiations, and with a large population of aging parents who are currently providing 24/7 care for their adult sons and daughters, families are begging for help.

Duffy was the first of many family members to address the caucus. And while all the stories were different, every single one of them pointed to a need for the state to address its policies for caring for individuals with life-long disabilities.

The Arc of Quinebaug Valley Director of Educational Programs Dawn Lazaroff said the current system is inequitable. “Some get it all,” she said. According to the DDS website, 368 individuals live at the Southbury Training School. More than 1,200 staff provides support and a broad array of services. Lazaroff estimated that STS costs could run as high as $300,000 annually per person. While acknowledging there are different levels of need among the disabled, she said far too many get little to no support. And there are those with a great need who have been told there are no more residential options for them.

Jody Santoro’s 16-year-old son needs help with bathing, dressing, feeding, taking medications and transportation. On top of that, he trusts everyone, Santoro said. He will need someone to watch over him, caring for his health, finances and future. “But the state has no plan in place,” she said. “The only time they will intervene is when I die.” 

That “promise” doesn’t allow any time for an individual to transition to a new home with the support of family. “They suffer the double trauma of losing a parent and losing the only home they’ve ever known,” Duffy said.

Walter Glomb wants the state to help develop what he called creative housing solutions. “The clock doesn’t stop for us,” he said. “We’d like to situate our adult children before the inevitable. We’re talking public support. Let’s fund it and let’s leave some flexibility in the system.”

One parent spoke about her 21-year-old son with autism who had “aged out" of the system. With language scores in the bottom 2 percent, but an IQ of 70, he didn’t qualify for any additional DDS services. His language skills make it nearly impossible for him to understand others or express himself, his mother said. There are no support services available for him and his family. And there is nothing they can do about it.

Legislators heard from parents in their 60s, 70s and 80s. They won’t be able to care for their adult children forever. The state has cut back on respite programs that take adult children for weekend stays. And the few hours of support provided weekly is a drop in the bucket for families. If an adult child works, the pay he or she receives is deducted from the state’s allotment. “They can never get ahead,” Lazaroff said.

One mother echoed that response. Her 24-year-old daughter works in supported employment. Her Social Security disability payment dropped from $424 a month to $362 a month after they took her wages into consideration.

Carl Knoll called state support a joke. He chastised the government for cutting $50 million from DDS while providing $1.5 to $2 billion to the University of Connecticut. “It’s time for legislators to see the folly of this,” he said. “Let’s restore the cuts and expand the support.” 

“They are the most needy, innocent and trusting of our citizens,” Tracy McNamara said. “They won’t steal, kill or destroy. Let the money go to those who do no harm.”



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