BERLIN — People with developmental disabilities, their parents and advocates urged the Department of Aging and Independent Living (DAIL) Thursday not to exclude them from decisions about their care.
The department wants to make changes to the way it determines who is eligible for care and what services it offers. Roughly 40 people attended and about 20 people weighed in on the proposed changes at a public hearing in Berlin.
To an untrained eye, the changes DAIL is proposing to its System of Care Plan look like nothing more than minor wording adjustments. But advocates steeped in the legalese of disability rights say the rules would completely alter the power dynamic between the state and some of its most vulnerable clients.
One of the changes applies to people already in a program who request additional care. It allows DAIL to “consider the person’s whole budget for consideration of the best way to meet the person’s new needs.”
Advocates say that’s essentially a way for the department to circumvent the normal decision-making procedure, cutting local providers and clients out of loop. Barbara Prine, an attorney with Vermont Legal Aid, said the message that sends to people with developmental disabilities is, “if you think you need more, we are going to take the decision out of your hands.”
DAIL also wants to add language that would allow it, “in the event of fiscal pressures,” to “institute changes to service options and how services are provided in order to be more economical while maintaining flexibility and choice, and/or take any other action reasonably calculated to manage such pressure.”
Advocates’ interpretation of that mouthful? If the department is running low on money, it can decide how to trim back costs. Right now DAIL has to wait 60 days before making any changes, giving clients, providers, advocates and the governor-appointed committee that advises DAIL on developmental services programs, time to comment.
That’s especially troubling, according to Karen Schwartz, director of the Vermont Developmental Disabilities Council, because DAIL is already exempt from the normal approval process for state agencies that want to change their funding priorities. That process, governed by Vermont’s Administrative Procedures Act, requires agencies to obtain public and legislative input before going ahead with a change.
“This would take out the minimal public input that exists,” Prine said, and leave the decision completely up to “departmental discretion.”
Nicole LeBlanc, a member of Green Mountain Self-Advocates, said the wording change “leaves the barn door wide open” for the department to cut back on services.
“It’s kind of scary as a parent to think changes could be made without us being notified or involved,” Bonnie Jamieson said.
Ellen Riley, whose 16-year-old son has Down Syndrome and will soon be getting care from the Developmental Services division, asked the deputy commissioner of DAIL, Camille George, sitting across from her, to answer a simple question: “Why are you doing this?”
A third proposal would let DAIL shave off $50,000 from the maximum budget that can be approved for individuals, bringing it down to $250,000, and would require reassessments of the budgets every three months.
Budgets tend to creep up to the hundreds-of-thousands realm when providers decide clients need intensive supervision to prevent them from harming themselves or others. There are about 20 people with budgets in this range. Agency of Human Services Secretary Doug Racine has tried to cut costs for released offenders who fit the same bill.
Advocates acknowledged that the costs are staggering. But Marie Zura, director of developmental services for the Howard Center, which serves some of those people, said she wouldn’t be able to deliver the same services under the new budgetary confines. The cap creates a dilemma, Zura said, “Do we disrupt people we’ve stabilized … just because we decided to institute an arbitrary cap?”
Some of the concern among advocates can be traced to the most recent legislative session, in which DAIL Commissioner Susan Wehry told lawmakers the department would need to cut $2.5 million in order to stay within its budget.
The Legislature said DAIL had to work with advocates when choosing where to trim back, and it couldn’t take any action on this front until Sept. 1, 2013. Schwartz said the changes DAIL has put on the table would enable it to make those reductions unencumbered by objections from advocates.
One after another, the people at Thursday’s hearings told DAIL officials that it shouldn’t take decisions out of the hands of the people “in the trenches” — clients and their caregivers.
