Scott has a developmental disorder called “Fragile X syndrome” that leaves him entirely nonverbal. New York state helps pay for a care plan that includes weekly trips outside, but like other well-intentioned programs connected to the state’s Office for People With Developmental Disabilities, it suffered in practice.
“It sounded great,” Pivar said. “The agencies were never able to find someone to do it.
Now Pivar is part of a 100-member task force the state created to help draft a new plan for the scandal-scarred agency. New York is petitioning the federal government for the right to throw out the rules governing how its developmental-disability programs are funded and managed, in favor of new ones developed by the task force.
The petition, known as an experimental waiver, is the first major initiative from the agency’s new commissioner, Courtney Burke. Gov. Andrew Cuomo chose her to lead the Office for People With Developmental Disabilities in March after he forced predecessor Max Chmura to resign, following devastating reports in the New York Times on how the agency did little to deter or punish rampant abuse of the people under its care.
“I was only going to take the job if I knew [the waiver] was going to move forward,” said Burke, who worked on state health policy for more than a decade at the Rockefeller Institute.
The waiver works like a science experiment, Burke said. The state takes money it is supposed to use in structured ways, and instead uses it in a series of pilots to test theories of what programs might work better.
This is a watershed moment, advocates said, to reform an agency in dire need of better communication, better care and more varied services. But advocates, patients and parents also worry about whether the many good parts of the Office for People With Developmental Disabilities will get thrown out with the bath water.
“At the end of the process, there’s a finite pile of money to be carved up,” said Pivar, who worries nonessential programs will get short shrift as the agency fixes its critical problems.
The scale of this departmental reform, and its relative speed, has never been attempted before. The Office for People With Developmental Disabilities has more than 23,000 employees, oversees more than 126,000 people and hopes to start new pilot programs by next spring. At the same time, the state has asked all agencies to make a 10 percent spending cut.
Burke says she’s working with New York State Police to investigate abuse in her agency. But parents like Michael Carey, whose 13-year-old autistic son was smothered in 2007 by a state employee trying to restrain him, say that may not be enough. The Capitol Report’s Susan Arbetter reports from Albany.
Burke believes the state can save money naturally, by moving people who need less supervised care out of institutions and into more flexible environments. Some 10–20 percent of the population receiving institutional care doesn’t need to be there, Burke said, and institutionalization is four times more expensive than flexible home care.
The Times found New York spends more than $1.8 million a year on each of the 1,300 individuals still living in state-run institutions, or more than $1,200 a day each. Nonprofit group homes also have high costs: One home with just 35 people in it charged the equivalent of $700 a day for each resident. The problem plagues the entire healthcare system.
“The money is paying for too high intensive care in too expensive of a setting. It goes toward buildings for inpatient care when, if you had invested in primary care, the person would have never ended up in that institution,” Burke said. “New York ranks last in the country for avoidable hospitalizations. That’s an incredible indicator that we’re not meeting the primary needs of our population.”
The waiver could help loosen bureaucratic tangles that cost money, too, Burke noted. Wendy Orzel, a woman with cerebral palsy who uses a wheelchair, needed help setting up services in another state when she planned to visit an ailing relative. But to do that, she had to go through an authorization process to show she was still disabled.
“C.P. is a lifelong disability!” Orzel said, throwing up her hands.
Her husband, Michael, 54, who also has cerebral palsy and has a much harder time speaking than his wife, said the reforms should aim to help workers learn to respect his dignity. He had trouble getting the words out, but he spoke them slowly and clearly.
“The workers talk to Wendy great,” he said. “They talk to me like a child.”
But a waiver is not alchemy, and it can’t create resources out of thin air. There isn’t money to pay workers more, Burke said, even though advocacy groups have cited low pay as a disincentive to their ability to hire and retain competent, caring individuals.
The starting salary for a direct-support worker, who works closely with disabled people every day, is just $29,900. And more than 80 percent of the workforce is made up of voluntary workers, who receive far less.
Burke also plans to cut costs by complying with the state’s top-down mandate to roll the developmentally disabled population into managed care, something that scares people like Ann Hardiman, the executive director of a consortium of nonprofit caregivers called the New York State Association of Community and Residential Agencies.
Read the full post at The Capitol.