Able Tales Newsletter

On February 26, 2003, Mark Johnson of Radio Vermont's WDEV interviewed Bobby Silverstein, director of the Center for the Study and Advancement of Disability Policy. Silverstein, who was in town to speak at Disability Awareness Day, was joined by Peter Youngbaer, executive director for the Vermont Coalition on Disability Rights (VCDR).

Bobby Silverstein spent approximately 13 years on Capitol Hill, working with both the house and the senate. He worked closely with Sen. Harkin for a number of years, and has also worked with Sen. Jeffords, Sen. Friss, Sen. Hatch and Sen. Kennedy. "The nice thing about working in disability policy is it is truly bipartisan consensus… democrats, republicans, liberals, conservatives were all kind of coming together… I was fortunate to be there when we worked on legislation like the Americans with Disabilities Act (ADA), special ed. legislation and voc rehab for people with disabilities," said Silverstein.

When asked to describe the ADA, Silverstein said, "In a nutshell, it codified common sense and common courtesy. It basically says that people with disabilities should be treated with dignity and respect in the areas of employment, public accommodations, and services provided by state and local governments."

He also shared his thoughts on how the ADA has manifested itself in a practical sense. "Look at something silly like the difference between FDR (Franklin Roosevelt) and his decision to hide his disability, and Bob Dole running for president and not only sharing about his disability, but making that a major part of what he did. And another silly example, it was not Miss Deaf America, but we had a Miss America who was deaf. The notion here, the major change is that we're switching from an old approach that looked at people with disabilities as vulnerable and 'defective' people, and rejecting that concept to a new notion that disability, like race, gender, age, is a natural and normal part of the human experience, and that what we should really be focusing on is 'fixing' the physical and political environment so that people can have meaningful opportunity to participate." Silverstein noted that while there has been a paradigm shift, implementation of the ADA still varies widely. Some communities and businesses are completely accessible, and others still are not.

Peter Youngbaer of VCDR shared that "As I've traveled around the country and talked to folks in the disability community and other policy makers, we're pretty well-off on a relative scale here in Vermont." Youngbaer believes that in the area of inclusive education, "We're probably the most inclusive state in the country. I am shocked when I go to some conferences about the battles that people are still fighting. We have issues that come up on an individual basis in the state, but the presumption is that kids with disabilities are educated with their non-disabled peers. That presumption does not exist in lots of places." Another significant area is physical access to government services. Vermont has built significant money into the budget each year to work toward its accessibility plan, which will be completed next fiscal year.

Silverstsein discussed the issue of special education funding, and the pressure on communities to come up with the money for it. Said Silverstein, "When Congress passed the Individuals with Disability Education Act (IDEA) back in 1975, it contained a provision saying that Congress would assume 40% of the funding. Over the years, that percentage has increased, it's somewhere around 17% or 18% now, but it's nowhere near that 40%." He also explained the uniqueness of the IDEA. "It's a civil rights statute that really provides the basic floor of opportunity required under the equal protection clause of the 14th amendment, and it's also a grant program to help states meet their civil rights obligations to children with disabilities. So the funding is necessary in order to insure that an appropriate education is provided to children, because in some cases, there are additional service and supports that are necessary to ensure meaningful opportunity."

Mark Johnson noted that in some cases, community members seem to be upset at people with disabilities because of the financial burden. "I think unfortunately that is the case," said Silverstein, "and a lot of this is really make-up for historically how school systems treated people with disabilities. In Maine, they had a provision up until the mid 1970's that said if it was inexpedient to serve a child with a disability, they could be totally excluded. So, we went from total exclusion, to try and level the playing field over the years, and that costs additional resources to get there." He noted, however, that providing education and services early on would reduce costs in the long term, by keeping people out of expensive institutions or other restrictive setting. "If the person can get skills to work, they're going to be taxpayers, rather on the various cash assistance programs or welfare programs. So, to me, it's an investment in trying to reduce costs to society and the state over time."

When asked whether there was any benefit to educating students with disabilities in separate settings, Bobby Silverstein responded that "When you look back at disability policy, there are three basic principles: 1) individualization: look at the facts about the individual, not the label, whether this disability or that, look at best practices for addressing the needs of this particular person; 2) make sure that there's meaningful opportunity, that services are effective; and 3) the presumption that with support services, folks can be served in the regular environment, in the most integrated setting appropriate." Taking those concepts into account, he notes that "It's individualized. There may be some folks who are deaf who can benefit from a school for the deaf, there are others who absolutely are best-served in the regular class with support services. … The answer to you question is it depends on the unique needs of the child, with a presumption of services in the most integrated setting appropriate."

Peter Youngbaer added that during a recent presentation for the house education committee on secondary transition services, one of the witnesses, a young deaf man, was asked the same question. The young man happened to be in a public school with several other deaf kids. "For him, that was a critical mass of peers, where he was comfortable in his own language, and then could take advantage of the social benefits of being on the athletic team, and everything else that was extracurricular at the school. He wouldn't have liked an institution, but he knows other kids who are the only deaf kid in their school, and that's really tough."

Silverstein shared that on Disability Awareness Day, he would be discussing the implications of the Olmstead decision and Vermont's approach toward implementing it, as well as provide training in how to be a more effective disability policy change agent. "When you see a problem," he said, "You get angry, you get frustrated, and you have passion because people with disabilities are not being treated appropriately. The question is, if you don't have the skills to bring about change, then the end result is more anger and more frustration."

Peter Youngbaer was asked, in light of Vermont's current budget difficulties, whether there were any threats to people with disabilities. He responded that a number of programs had been reduced, suspended or eliminated. "That's putting a lot of pressures on a lot of different places," he said. A Medicaid reform package, Vermont Health Access Plan reform package, and the issue of co-payments, up-front deductibles are currently being considered. He also noted, "For a number of years, under Act 160, we were diverting resources from nursing homes, which is generally the most expensive long-term care use of Medicaid dollars, and not the most desired setting for most people. As that utilization dropped, those funds were diverted into the community and spent on an array of home and community-based services, but for the past couple of years, those savings, instead of going into the community, have basically been going into the bottom line of the budget." He stressed the need for those resources to return the community.

When asked how to get people outside the disability community to feel the same passion about these issues, Youngbaer replied, "It's not hard to find a personal or family connection with policy makers. You try to connect on a level that they understand, and that's different for every person. The numbers speak the truth about upfront investment on disability policy." Silverstein noted that the principles of inclusion, meaningful opportunity, individualization, and full participation are not specific to disability alone. "You can learn from disability policy for making something universally accessible for all," he said. "Whether you're talking about health care, childcare, job training, education, these principles apply to make the system more responsible to all rather than just the 'average person'." They gave examples of voice-activated computer technology, closed-captioning, and entrance ramps, all of which were developed for people with disabilities, but which members of the general population also use and benefit from.

Mark Johnson brought up the topic of the Agency of Human Services reorganization, and an example that had been in the media of a client who was receiving 28 hours of care a day. "The headline case that you talked about was misinterpreted," said Youngbaer. "What that family had to do because of the way things were set up was to go to several programs and get authorization for 27 or 28 hours in one day, in order to get the actual number of hours that they truly needed. If you need 12 hours, you should be authorized for 12 and you should get the 12. But folks have to go through all these gates and all this bureaucracy, all these different programs, play the game if you will, and basically get over-authorized just to get what they really need, and it shouldn't be that tough. It's just not efficient on a lot of levels."

The current problems stem from a lack of coordination consistency among the many available programs. Said Youngbaer, "Depending on what label you have or what door you happen to walk in, you can get a different number of hours authorized for respite or personal care, the terms and conditions under which you engage that caregiver are different. You might be able to hire them in one program, you can't in another. The wage rate that the caregiver is paid is different. It's just a mess. It's just a hodgepodge." Youngbaer strongly supports the reorganization of AHS, and noted that the statewide shortage of caregivers also needs to be addressed. Bobby Silverstein added that, "Interagency coordination and collaboration are needed at the policy level, so that you are actually looking at the individual as the center of the policy, rather than the various silos."

Peter Youngbaer ended the interview by explaining the issues that VCDR is following in the current legislative session. In addition to the budget, which is a significant issue, there is a bill that deals with the certificate of need process for hospitals, other health care systems and programs, a bill that would reinstate the transfer of resources to home and community-based services, and a policy on transition services. He stressed the importance of transition services to protect our special education investment. Transition services can help people achieve meaningful employment, participate in their communities, and pay taxes, relieving some of the burden on the public benefits system. "The kind of line I like to use, and legislators seem to respond to, is that 18 to 65 is a long time not to have a job," Youngbaer said. "A big untapped workforce is the disability community, and that takes good planning and good transition out of school to really bend that curve."