Advocates for the aging and people with disabilities in Wisconsin achieved an important victory on March 19 when the governor signed a law lifting the caps that had been imposed on three key Medicaid programs supplying home and community-based services. We talked to Lisa Pugh, the public policy coordinator at Disability Rights Wisconsin, about how the advocates won and why it matters.
First of all, congratulations!
Thank you. It’s a huge victory for community-based services and the people who provide them.
For those of us who don’t live in Wisconsin, can you please explain what these programs do?
Wisconsin has a home and community-based care waiver from the Centers for Medicare and Medicaid Services (CMS) that we call Family Care. It’s a program for the aging and people with physical and developmental disabilities. This was born out of a bipartisan agreement in our legislature, about 10 years ago, that people should be able to live where they want, which is mostly their own homes or in the community. And much of the reasoning was that institutions are far more costly to the taxpayers. Our agreement with CMS said we would roll out this program in all 72 counties on a particular timeline, and each county would have three years to bring down its waiting list to zero. So far, Medicaid beneficiaries who qualify for long-term care in 57 out of 72 of our counties have full access to home and community-based long-term care through Family Care.
IRIS is somewhat of a “sister program” to Family Care, as it has to be provided as an option anywhere Family Care is located. IRIS stands for Include, Respect, I Self-Direct and is Wisconsin’s Self-Directed Supports Program for older people and adults with disabilities. It is the largest such program in the country and is relatively new in our state.
Family Care Partnership is an integrated health and long-term care program for frail elderly and people with disabilities. The Partnership Program consists of several managed care organizations located in different geographical regions of Wisconsin. It is not statewide. Counties without Family Care or IRIS still have access to traditional Medicaid waivers, what we can “legacy waivers,” but there is no entitlement to services and the wait lists are generally long.
Were those programs a result of the Supreme Court’s Olmstead decision, which said states have to provide long-term care in the least restrictive setting possible?
You might say that’s the stick approach. I think Wisconsin looked at its investment in family care as more of the carrot approach. As a state, we believe that we should support our seniors and people with disabilities with a good quality of life, and the best, most cost-efficient way to do that is at home. So even though Wisconsin, like every other state, had the Olmstead stick hanging over its head, our Family Care program created access to home and community-based services in a way that no other states were doing.
Did you manage to get your waiting lists down to zero?
Some counties who were the first to enroll in Family Care had no waiting lists at all, and most had only short lists. Until last year, if you were the parent of a high school student who needs long-term support and you lived in a county with Family Care, you knew you could hand off your child from the school system after he or she graduated from high school to a system that would provide some employment support and social supports, and that would allow that son or daughter to live in the community.
What changed last year?
Our governor proposed a cap on the program, which the state legislature approved. As of July 1, 2011, no one new would be admitted to the program unless someone who was in it died or left the program or moved out of the state.
By November, the last month for which we have an official number, there were about 8,200 adults on waiting lists waiting for long-term care. That’s still a lot fewer than there are in a lot of other states, but it had grown exponentially in just a few months. Parents of students with a disability were worrying that they were looking at their children falling off a cliff when they graduated high school.
We went from having all the infrastructure we needed in place to prepare for the aging baby boomers and the expected growth in need for home care workers to putting an unnecessary halt in that preparation for the future. So it was a significant victory for the many advocates who worked tirelessly on this issue for a year and a half that we were able to overcome this roadblock and lift the caps.
Who is this “we”?
The Survival Coalition of Wisconsin Disability Organizations, which has more than 40 member organizations, was the driving force.
What did you do to get your message across?
We met with policymakers and communicated with people at CMS. We sent out grassroots policy alerts. We had people with disabilities contact their legislators. The Department of Health Services held public hearings and we supported people who participated in them. Our partners in the Wisconsin Board for People with Developmental Disabilities had a Take Your Legislator to Work day that was a huge success. The legislators came to work with people with DD and they talked about how Family Care or IRIS supports let them come to work and be a taxpayer. They told their legislators: “This is how much I make and how much I’m contributing as a citizen and a taxpayer, instead of relying solely on public supports.” That helped dispel all the myths the legislators were hearing about fraud or how people who don’t qualify for the program were somehow accessing it, which couldn’t be further from the truth. Also, we engaged our Wisconsin Congressional delegation on this issue and ultimately even CMS wrote a letter to Wisconsin DHS about the Family Care caps. We were working on all advocacy fronts.
What can direct care workers and care recipients in other states who are threatened by budget cuts learn from your experience?
Remember that the facts are on our side. We all know that demand for long-term care services is growing fast. If you’re advocating for home and community-based services, talk about how it’s more cost-effective to support people in their own homes, where they want to live, than in institutions. And be very sure that policymakers know what they are voting for or against. We found that many legislators who were voting on this had no idea what the programs did. So we kept it simple. We said: “These are programs that help people get up in the morning, help them get dressed and get to work.”
Have as many of the care recipients or workers who will be affected as possible visit the legislature or make phone calls or send letters. Make it personal. Talk to them about how this issue affects people’s lives, so they understand what it is that they’re voting for.