Caregivers of the disabled fear policy change

“I think that the changes that are being proposed are profoundly disrespectful to all that we’ve achieved over the last 35 years here in Vermont,” says Teri Motley, whose son receives assistance from the Lincoln Street developmental services agency in Springfield.
http://rutlandherald.com/article/20130804/THISJUSTIN/708049941

Caregivers of the disabled fear policy change By Peter Hirschfeld Vermont Press Bureau | August 04,2013 Rutland Herald MONTPELIER — Teri Motley is getting scared. She isn’t worried about her own welfare so much as that of her 40-year-old son, who is among approximately 2,700 Vermonters with developmental disabilities receiving “home- and community-based service” waivers designed to keep them active in local communities. The source of Motley’s angst lies in a proposed policy change by the Shumlin adminstration, which is seeking new flexibility over the funds appropriated to people like her son. With demand for the services outpacing annual budget increases, Susan Wehry, commissioner of the Department of Disabilities, Aging and Independent Living, says the changes would deliver the fiscal nimbleness needed to resolve budgetary constraints. “It really is about ensuring the sustainability of our programs, and the ability to be responsive when we have unexpected fiscal pressures,” Wehry says. The families of the developmentally disabled, however, say the Shumlin administration is mounting an end-run around the public budgeting process they rely on to advocate for their loved ones. “I think that the changes that are being proposed are profoundly disrespectful to all that we’ve achieved over the last 35 years here in Vermont,” says Motley, whose son receives assistance from the Lincoln Street developmental services agency in Springfield. “And what they seem to say is the interests of the people who count the beans are prioritized over the interests of those who are trying to provide a simple, individualized life for people who need it,” she adds. Motley was among the dozens of parents and advocates who spoke out against the changes at a pair of public hearings last month. At issue is the proposed addition of language to the “System of Care” plan that dictates the manner in which Wehry’s department can re-appropriate funds in the face of unanticipated budgetary shortfalls. The new text would grant the commissioner the power 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.” It’s the “any other action” clause that has drawn the most attention. Karen Schwartz, director of the Vermont Developmental Disabilities Council, says the language is so broad and unconditional as to undo other safeguards contained throughout the carefully crafted System of Care document. “It contradicts the whole purpose of having a system or a plan, to have language embedded in there that basically says anything can happen at any time,” Schwartz says. Changes to the System of Care plan require a 60-day public input process, a window used in the past by advocates, clients and family members to push back against proposed changes, or to spotlight their potential unintended consequences. By preemptively according herself the authority to use “any other action” than the ones outlined in the “System of Care,” Schwartz says, Wehry would be able to institute substantial policy changes with no public notice and no opportunity for feedback from families or caregivers. Ernie Zick, the “proud father” of a 24-year-old son with Down syndrome, says parents’ ability to inform and influence System of Care changes has improved the system. “My son Brandon has become the best he can be only because we have negotiated and fought for him every day of our lives for 24 years,” says Zick, of Sheldon. “When you go ahead and create financial changes based upon spending habits alone, you’re in no way comprehending or reviewing that person’s needs, plans or goals.” Wehry says the proposed language would in no way undercut the “important role” that parents like Motley and Zick play in the budget adjustment process. She says the System of Care already gives her department the ability to impose across-the-board rescissions to programs under its jurisdiction. Wehry says there may be better ways than simply to cut, and that the new language would expand options in ways that might benefit clients. “We in the department actually did not want to kind of restrict ourselves to just these options,” she says. She says she also wouldn’t exercise her new unilateral authority over System of Care policy without first consulting providers, advocates and families. “The (proposed changes) have led to a fear that we will somehow act independent of the System of Care plan or circumvent the System of Care plan or not involve advocates, but nothing’s further from the truth,” Wehry says. Those reassurances haven’t reduced the anxiety of many families, who offered heart-wrenching and often tearful testimony last week. Wehry says the “fear-based advocacy” practiced by Schwartz and others has contributed to those concerns. “We have a fear-based advocacy system where the best way to get people to have their voices heard is by pointing out the worst-case scenario as opposed to the best-case scenario of this broader conversation, and I understand that,” Wehry says. But Schwartz says the stakes for the families she represents are too high not to consider the ill-effects of any proposed changes. While the annual budget for the home- and community-based care program has risen considerably in recent years, from about $122 million in fiscal year 2008 to $141 million in fiscal year 2012, the inflow of Vermonters into the program has been steep. About 100 more people come into the program every year than leave it, meaning average annual waivers have remained flat even as overall program budgets rise. And with federal budget pressures looking especially grim, Schwartz says, many families worry that it’s only a matter of time before the average annual waiver — it’s about $54,000 — will begin to come down. It’s at that point, Schwartz says, that families could lose the level of funding that has allowed their children not merely to exist, but to be productive members of society. She says advocates fear a return to a mindset abandoned 35 years ago, when Vermont stopped institutionalizing many of its developmentally disabled residents. “This is about people’s lives. This is about long-term supports that allow people to be in the community and have jobs and friends and feel like they are part of society,” Schwartz says. “And anything that’s a threat to that really feels like going backward to that time when people were simply given shelter, when we didn’t make them a part of an integrated community.” A final decision on the proposed System of Care changes will come later this month. Because policy changes undertaken in the System of Care aren’t subject to the Administrative Procedures Act that governs policy changes elsewhere in state government, Wehry will be the final arbiter over whether the proposal is enacted.