Scores of Vermonters with physical, developmental and psychiatric disabilities gathered at the Statehouse Wednesday to meet with their legislators. Some traveled long distances to explain the effect of budget cuts on their hopes of living independent, productive and meaningful lives.
They had another message, too. As Ed Paquin, the executive director of Disability Rights Vermont put it, “A disability is a natural part of the human experience. It’s not a basis for discrimination.”
Two pieces of legislation drew extensive discussion. One (introduced in the House as H.399 and in the Senate as S.90) would require updating state statutes to use respectful language in referring to people with disabilities. Max Barrows, outreach coordinator for Green Mountain Self Advocates, presented the change as a first step toward changing public perception. Terms like “mental retardation” cause “people to look down on us,” he said. “It implies we’re not capable of doing anything in society.”
Kyle Moriarty, a 20-year-old wearing chinos and a baseball cap, typed out a message on a laptop. It was translated by a voice synthesizer. “I want people to know that we are productive members of our community,” he said. “The ‘R’ word makes us look less intelligent.”
Barrows linked disrespect with increased rates of abuse of children and adults with disabilities. His next target is social networking sites, where the ‘R’ word is a common put-down.
Marty Roberts of Vermont Psychiatric Survivors advocated using “person first” language. Rather than saying someone is mentally ill or a schizophrenic or is an addict, she suggested saying a person “has a mental health challenge or is diagnosed with a mental illness or has lived experience with mental health challenges. You’re looking at a person first,” she said.
A bill that would expand involuntary medication of people with psychiatric disabilities, S.88, evoked passionate opposition.
Paquin explained that compared to the existing law, “this proposal squeezes lengths of time. There’s already been testimony by a court administrator and a judge who’s heard many of these cases, who said the time frames they’re looking at are completely unrealistic. It would essentially increase the amount of involuntary treatment that goes on because it would allow them to fold in a forced med hearing with a commitment hearing.”
Before the recession, Paquin said, the census at the state hospital was declining, but now the state hospital and the psychiatric units in local hospitals are usually full – perhaps because of cuts in community services, he observed.
Paquin cited data from the emergency department at Central Vermont Medical Center regarding the number of instances in which a patient with a psychiatric issue was held for more than 12 hours. There were none in the period from February 2007-08. The following year, there were three, with one person being held for 16 hours and another for 20 hours. In 2010-11, there were 10 instances, and one person was held for 63½ hours, Paquin said.
“At a time when the community system is under so much strain,” he said, “I think we really have to be watching for moves like this that violate people’s rights in very fundamental ways.”
The budgets for the Departments of Mental Health and Disabilities, Aging and Independent Living (known as DAIL) contain a broad range of programs with various criteria for services. In addition, the designated agencies (regional service providers) have a degree of autonomy, which means the budget cuts could affect services differently from one region to the next.
The bird’s-eye view of the budget landscape is this, generally: The Shumlin administration proposed 5 percent cuts for the designated agencies, which provide regional support services for Vermonters with mental health and developmental disabilities. The House Appropriations Committee restored 2.5 percent of the funding.
DAIL’s Developmental Services program was budgeted at $148 million for the 2012 fiscal year, the same as for the current year. Advocates point out, though, that since new people enter the system every year, level funding effectively translates into a budget cut for people already receiving services.
Karen Schwartz, director of the Vermont Developmental Disabilities Council, explained that level funding would create a $7.75 million shortfall in the money needed to provide services for the increased Developmental Services caseload. Tuesday, the House Appropriations Committee acted to halve the shortfall that level funding would create.
Before the advocates dispersed to visit their legislators, they talked about how losing services would affect their lives. Many were afraid they would be unable to work.
Nicole LeBlanc, “the guardian of inclusion” and a member of Green Mountain Self Advocates, observed that “this is the fourth year of cuts, even though there is increasing need.
“It is not acceptable to cut services from existing people to fund services to new people,” she declared. “When agencies get cut, services get cut. We’re concerned that services won’t be individualized anymore.”
LeBlanc noted that agencies used to provide day workers to take people to do shopping or to participate in recreational activities of their own choosing. Some people living with home providers have had their day workers replaced by one-size-fits-all group programs held at the agency, she said.
Kayia Andrews said her fiancé currently has developmental disability services. “I know that if he doesn’t get services, it might make it difficult for him to live on his own. If people don’t get these services, a lot of them will have to move back to their families. We need to do something about this so these people can be on their own. They will be able to be independent if we can keep these developmental services from being cut.”
Ashley Maria Thibodeau, who lives in Lyndonville, read a letter she had written to Gov. Shumlin. “I had a bad childhood,” she said. “My biological mother was a very sick woman and she needs help with her disease. I was six years old when I went into DCF custody. I moved from place to place. I am now 20 years old, and I have a great life with my new family. At the age of 18 years old when I met Northeast Kingdom Human Services for disabled individuals like myself, they have given me great things like a place to live.
“Mr. Shumlin, if I didn’t have NKHS help, I would be on the streets with nothing. . . If I didn’t have my services – I wouldn’t know how to communicate without my service workers. If the budget gets cut, my community hours with my service workers would suffer, too. I need help and guidance with how to communicate with people appropriately, manage money and how to be safe in the community. So please stop cutting our budgets.”
Mark, a bearded man from St. Albans City, has people who cook for him and take him out several times a week. “Otherwise, I don’t go anywhere,” he said. “I have seizures.”
Jesse Breo was diagnosed with Asperger syndrome when he was 14 and was homeless for two years until he started receiving developmental services. “Without my developmental services, I would be homeless again,” he said.
Choices for Care’s respite services illustrate how harsh the cumulative effects of the reductions have become, even with part of the funding restored.
Choices for Care is a long-term care program that uses a Medicaid waiver to pay for services to enable the elderly and people with physical disabilities to stay in their homes. At present, unpaid caregivers can get up to 720 hours of respite services per year. Schwartz noted that under the governor’s budget, the respite hours would have been cut in half, to 360 hours a year, with no variances – not even for a person who might be caring for someone with dementia. The House Appropriations Committee decided to fund 540 hours per year.
Instrumental Activities of Daily Living is another startling example. Instrumental ADLs include housekeeping, shopping for food and paying bills. Ten hours a week of such help used to be provided. It is currently capped at 4 ½ hours. The budget proposal cut it to two hours with no variances, Schwartz said. (The House Appropriations Committee restored half the money and provided some flexibility in the cap.)
Twenty-five years ago, Schwartz said, many of the people she saw advocating for their services Wednesday would have been institutionalized in the Brandon Training School. Instead, “they’re here, talking to their legislators. They have a life, so what a change!”
It’s a change that has personal significance for her: Her 21-year-old son, an only child, has a developmental disability.
“He’s had opportunities that he wouldn’t have had,” Schwartz said, “but I fear for the future.”
