Vermont is restructuring the system for managing and delivering community-based services to people with developmental disabilities. While state officials and advocates say substantial reform is necessary, many service providers and families are worried that the final product could hurt benefits.
“I’m afraid that in trying to fix some of the things that are a problem, we are going to end up messing up a very good system,” said Susan Yuan, whose 45-year-old-son, Andreas, receives in-home support.
The changes represent the largest overhaul the system has seen in decades. The reforms under consideration will change who manages cases, what the state pays for care, and how a client’s needs are assessed. About 3,000 Vermonters currently receive services, which range from job support to round-the-clock care.
Ten independent nonprofit designated and five specialized services agencies provide direct services for Vermonters with developmental disabilities. The system is overseen by the Developmental Disabilities Services Division at the state’s Department of Disabilities, Aging and Independent Living.
“It literally is going to change most every aspect of what we do and how we do it,” said Bill Ashe, executive director of Upper Valley Services, the designated agency for Orange County.
And that’s his chief critique of the process.
“If you have a car that has some dents in it, you probably fix the dents in the car before you decide you’re going to buy a brand new car,” he said.
Two key events kicked off this process. In 2014, the state auditor found Vermont could do a better job monitoring payments to designated agencies. Around that same time, the federal Centers for Medicare and Medicaid Services, which funds a bulk of developmental disability services, issued a crucial new rule, requiring that case management be “conflict-free.”
The new rule requires that separate entities deliver and coordinate the services people receive.
That has major implications for Vermont because designated agencies currently offer both direct services and case management (the coordination of services).
Now, under federal rules, designated agencies can only offer case management or direct services. Kirsten Murphy, the executive director for the Vermont Developmental Disabilities Council, a federally funded advocacy group created by Congress, says the objective is to eliminate potential conflicts of interest.
“If that planning process is led by somebody employed by the designated agency, that case manager does have a vested interest in possibly steering you toward things that are more convenient for the agency to provide,” Murphy said.
The state hasn’t decided which approach it will take to come into compliance with the conflict-free rule. Most states have a standalone agency responsible for case management, Murphy said, but there appears to be little appetite in Vermont to go that route. The council, for its part, favors a hybrid system, where clients, or their guardians, can choose who manages their case – including if they’d prefer to stay with their designated agency.
Clare McFadden, director of the Developmental Disabilities Services Division, says the state is trying to build a “transparent and accountable system” for tracking the money it sends to designated agencies. The auditor’s report prompted Developmental and Disability Services to take a closer look at how it tracked payments to designated agencies, and the information gaps it found concerned state officials.
“We are not sure if what we paid equates to what somebody actually got for services. And that’s a problem,” she said.
Bill Ashe of Upper Valley Services says the state probably needs to improve its monitoring, but he worries that the changes under consideration will be overkill and will make the process of obtaining services more bureaucratic.
“People’s lives are very dynamic. They change every day. They don’t fit nice and neatly sometimes into the little boxes that are going to be created when you have an ultra administrative approach,” he said.
As part of its suite of reforms, the DDS is also working to create a standardized process for assessing a client’s needs, and for setting rates. McFadden said the state is worried the current process is too subjective and leads to uneven outcomes.
“What we want to do is move to a more standardized process. So that somebody in Newport is treated the same as somebody in Bennington,” she said.
But Ashe counters standardized assessments ignore context, and won’t give local agencies the flexibility to tailor services to their individual clients.
“The one-size-fits-all outcome that I think is at the basis of this is really inconsistent with the way in which Vermont has provided services to people for the last 25 to 30 years,” he said.
Generally, Ashe is worried reforms will be expensive to implement. And, unless the state decides to find new money to inject into the system, he thinks that will necessarily mean cuts to services.
Murphy said she’s sympathetic to that point of view. “There’s no slack in the system,” she said, which makes concerns about administrative reforms coming at the cost of services a reasonable fear.
But she also emphasized that the state hasn’t settled on a vision for reform yet, much less which funding streams will pay for what.
This whole process, Murphy said, has been “really challenging” for the agencies that carry out these services.
“Understandably, they may share their worries about changes that are under discussion and how this may impact their work,” she said. “This has made some families really scared about the future before we even know what most of the changes will look like.”
McFadden, of DDS, also echoed this. Some agencies, she said, are letting their clients know “in an unbiased way” that changes are afoot, and that their feedback is welcome.
“I think other agencies may be, just, like, using a ‘the sky is falling’ approach and making people more anxious than may be necessary,” she said.
The state is looking at a January 2021 start date. Officials are still gathering feedback. Public input sessions on how the state should manage casework are scheduled later this month in Jamaica and Springfield. Whatever plan officials settle on will need approval from a legislative panel and the Centers for Medicare and Medicaid Services.
