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2020: Disability Rights to Take Center Stage as Minnesota Legislature Sets to Convene

January 11, 2020
By Chris Serres, Star Tribune

Legislators from both parties want changes in the state's assistance program, plus more inclusion.

In a rare show of unity, state legislators and disability rights advocates are gearing up for a major push to reform Minnesota’s $3 billion assistance program for people with disabilities and break down decades-old barriers to inclusion and independence.

Just weeks before the 2020 Legislature convenes, both DFL and Republican lawmakers are calling for legislation or regulations that would help people with disabilities become more integrated into society and to live more independently.

They are also taking a closer look at how the state administers approximately $3 billion in Medicaid funds for disability services, taking aim at programs that can isolate people from the broader community.

Several prominent lawmakers said they see opportunity in the recent turmoil at the Minnesota Department of Human Services (DHS), the state agency that oversees Medicaid and disability services. The result has been leadership changes and, they say, a possible shift in priorities at the giant department.

“The time has never been better to pursue a new vision — a vision for independence,” said Sen. Jim Abeler, R-Anoka, who oversees a key human services committee. “There is a broad recognition that, every day, our system gets in the way of people with disabilities being independent.”

The push for change comes on the heels of a Star Tribune special report that detailed failings in the way Minnesota distributes Medicaid funds designed to help people with severe disabilities. Across the state, the investigation found, access to essential benefits was often arbitrary and unpredictable — dependent on where people lived rather than on individual need. The report also highlighted areas in which Minnesota has fallen behind other states in efforts to give people with intellectual and developmental disabilities more control over their own services and living arrangements.

The heads of two legislative committees that oversee social services said they plan to probe how DHS manages a coveted form of Medicaid assistance, known as a “waiver,” which helps people with disabilities pay for services such as personal care-giving, job coaching and transportation that help them live more independently.

Nearly 90,000 Minnesotans receive Medicaid waivers, which are disbursed by counties, but county policies are inconsistent and often capricious, creating vast geographic disparities. Many families and social workers have also expressed frustration with the state’s costly and cumbersome system, known as MnChoices, for determining eligibility for Medicaid waiver benefits, according to the Star Tribune report.

Rep. Jennifer Schultz, DFL-Duluth, who heads a long-term care committee in the House, said she plans to hold a hearing next month in which she will challenge DHS officials to explain what they have been doing to address the problems highlighted in the Star Tribune series, including the variations in how waivers are administered by counties and the burden placed on families.

“The [waiver] assessment process is too cumbersome,” Schultz said. “There has to be a better way to reduce the cost of doing these assessments and to make the process less stressful on families.”

Lagging behind other states

In recent years, grassroots efforts to expand independence for Minnesotans with disabilities have been overshadowed by more urgent concerns, such as cuts to Medicaid payments and a critical shortage of home care workers. The state’s large disability advocacy groups, lawmakers and DHS often pursued competing agendas, resulting in gridlock and policy inaction.

“The whole system has been paralyzed with status quo,” Abeler said.

The upcoming legislative session is shaping up to be different, with groups reporting rare consensus around the need to improve the state’s performance on inclusion and quality-of-life measures. Minnesota lags much of the nation in promoting access to housing in the community and competitive employment for people with disabilities. Since 2015, Minnesota has fallen from 7th to 21st among states, in a prominent national ranking of how states support and empower people with intellectual and developmental disabilities.

That lagging performance, advocates say, reflects Minnesota’s choice to place a priority on health and safety rather than personal liberty.

“For so long, the dominant narrative around our community has been risk and vulnerability,” said Alicia Munson, public policy director at the Arc Minnesota, a disability advocacy group in St. Paul. “Going forward, we want to really highlight people’s strength and capacity.”

‘Lip service’

Among its major priorities for the 2020 session, Arc Minnesota is working with other nonprofits to modernize Minnesota’s guardianship law. Approximately 15,000 adults across the state live under the supervision of court-appointed guardians, who often gain broad powers over the people they are assigned to protect. Judges often grant this authority based on the assumption that people with disabilities are incapable of making major life decisions.

At least a dozen states, including Nevada, Maine and Texas, now have laws that encourage a less-intrusive alternative to guardianship, known as supported decision-making, in which individuals with disabilities can designate their own teams to help guide them, as needed.

Some lawmakers are also looking at ways to give people more control over their Medicaid waiver benefits, a model known as self-direction. Currently, Minnesota ranks behind many other states in the percentage of people with intellectual and developmental disabilities who report directing their own services, according to a national survey of states. Research has found that self-direction improves quality of life and can ease workforce shortages by empowering people to hire their own family and friends as caregivers.

“There is lip service behind self-direction, but we’re way behind where we need to be,” Abeler said.

Expanding employment options will be another major priority. Minnesota has nearly 10,000 adults with disabilities working for agencies or in facilities (known as sheltered workshops) that pay sub-minimum wages. A number of other states, including Alaska, Maryland and New Hampshire, have moved to eliminate sub-minimum wages for workers with disabilities, and many advocates view the practice as an outmoded relic of a more segregated era.

Rep. Hunter Cantrell, DFL-Savage, has drafted a bill that would direct three state agencies to create a coordinated plan to expand competitive employment options, at minimum wage or higher, for people with disabilities.