For hundreds of Minnesotans, the wait for disability services is over

The number of Minnesotans with disabilities who endure prolonged waits for crucial social services has fallen sharply in recent months, as the state removes long-standing barriers to families most in need of assistance.

State officials are pressuring counties to spend more of the billions of dollars allocated annually — much of it unspent in recent years — for a coveted form of Medicaid assistance that helps people with disabilities build more independent lives in the community.

A court report issued last week shows that, as a result, hundreds of people who have languished for months — and even years — on waiting lists for community services are now finally getting help.

In the final nine months of 2015, about 1,100 people were moved off waitlists, reducing the overall backlog by 23 percent statewide. In Hennepin County, officials are approving disability waivers at quadruple the rate of the past several years, resulting in more than 200 people being moved off the county's waitlist last year.

After a Star Tribune story first highlighted the huge waiting lists early last year, the Legislature and state officials pushed forward with reforms that would make it easier for people to obtain community-based services. These reforms have unlocked tens of millions of dollars set aside to fund a variety of services, from home caregivers to job coaches, for people with disabilities.

Minnesota has among the longest waiting lists in the nation for the highly coveted form of assistance, known as a Medicaid "waiver." In some cases, adults who could be living in their own apartments or working in mainstream jobs have been stuck in their parents' homes, unable to obtain services, the Star Tribune found. Some had waited a decade or more for services, while millions of dollars set aside for services had gone unspent in their counties.

While lengthy waits still persist — nearly 4,000 applicants are stuck on county waiting lists for waivers — the recent gains mark a turning point in the state's long struggle to better manage Medicaid dollars for families who need services. "We are making great progress," said Alex Bartolic, disability services director at the Department of Human Services. "A lot more people are receiving services than in the past, and that should be celebrated."

Minnesota's waiver benefits are the richest in the nation, and families often liken the experience of getting approved to winning the lottery. Yet, each year, tens of millions of dollars allocated for waiver services go unspent by counties, resulting in epic waits. For someone with a developmental disability, the median wait has been 5 ½ years, state records show.

In recent years, the state has faced increased pressure from the federal courts and advocates to reform its patchwork county-by-county system for administering waivers. Last spring, lawmakers passed legislation requiring counties to spend at least 97 percent of their allocated waiver funds. The state also loosened rules that required counties to reimburse the state if they overspent their waiver funds, a major reason counties conserved the money.

The changes have emboldened county officials across Minnesota to be far less stingy with waiver money. In recent years, for instance, Hennepin County has held back 7 to 8 percent, or more than $20 million, of its allocated waiver funds each year. In 2016, the county expects to reserve closer to 1 percent of its waiver allocation, meaning hundreds more people will be moved off the county's waitlist, which currently totals about 1,000 people, officials said.

"We have a lot more wiggle room than we had in the past to move people [off the waitlist] without worrying about financial constraints," Michael Herzing, program manager at Hennepin County. "That's hugely important."

Yet perhaps the biggest change occurred at the Department of Human Services, the state agency overseeing the waiver program. For the first time, the agency last summer began to shift Medicaid waiver funds from counties that routinely underspend their allocations to counties with long waitlists. Since July, when new legislation took effect, DHS has moved funds between counties a total of 18 times.

The agency also updated its data collection system in December so that it can tell, in real time, when a person on a waiver waitlist is in urgent need of disability services; the state can then pressure county case managers to ensure that these people get services.

Among those already benefiting from these changes is Brianna Hoover, a 19-year-old from Cambridge who has fetal alcohol syndrome. After a five-year wait, Brianna was finally approved in October for a waiver that will fund in-home therapy at least twice a week and pay for community outings with her peers after school. The waiver will also fund two days a month of respite care for Brianna's mother, Candy, who adopted Brianna as an infant.

Candy Hoover hopes her daughter will start to show the same improvements she saw in her son, Cory, after he received a waiver in 2010. She said Cory has seen his social skills flourish and self confidence grow with the help of regular community outings and one-on-one therapy. "The wait [for a waiver] had been so long that I started to wonder if this day would ever come," Hoover said. "Now I'm excited at what the future holds for Brianna."

As the full effect of recent reforms takes hold, the number of people waiting for waivers should continue to decline, state officials said. The state's Olmstead Plan, a detailed blueprint for expanding community services for people with disabilities, calls for eliminating the waitlist for one of the state's primary waivers, known as the Community Access for Disability Inclusion (CADI) waiver, entirely by October. The number of people on the CADI waitlist has already been slashed by two-thirds, to less than 500, since March.

"We have absolutely turned the corner," said Mary Tingerthal, chair of the subcabinet appointed by Gov. Mark Dayton to oversee implementation of the Olmstead Plan. "For families who are planning for their loved ones, this will bring more certainty about being able to access services when they need them. It's a really big change."

Chris Serres • 612-673-4308