Thousands of Minnesota families are being forced to wait months — even years — when they seek state financial assistance that helps people with disabilities build more independent lives.

Minnesota’s waiting list for this form of aid, relative to its population, is now among the largest in the nation.

And yet tens of millions of dollars intended for these families is going unspent in Minnesota every year, records show.

Carrie Peterson-Edberg, whose 12-year-old son Garrett has severe autism, recalls shouting with joy when a county social worker called to say he qualified for aid to cover behavioral therapy and personal caregiving at home.

That was seven years ago. They are still waiting.

Jeff and Ellen Pearson moved to Minnesota from Indiana in the hope of obtaining a better life for their daughter, Abby, who has been cognitively impaired since birth. Abby was immediately placed on the waiting list.

That was 14 years ago. They are still waiting.

Families say the long waits needlessly isolate people with disabilities from mainstream work and more fulfilling lives. Adults who could be living in their own apartments or working in middle-class jobs are instead stuck in their parents’ basements, awaiting approval they may never get.

The chronic delays do not occur because Minnesota is a stingy state. It consistently ranks among the top states nationally on a key measure of disability spending. For those who do receive the coveted assistance, known as a Medicaid “waiver,” Minnesota’s package of benefits is the most generous in the nation. And, state officials point out, most families on the waiting list still receive other subsidized services, such as personal care aides and county case managers.

Still, families say, in distributing a form of aid that can open the door to mainstream life, Minnesota remains wedded to a process that is opaque and infuriatingly slow. Since 1995, more than $1 billion allocated to counties for this assistance by the Legislature has gone unspent, records show. For someone with a developmental disability, the median wait is now five-and-a-half years.

Abby Pearson, now 26, said she “feels trapped” in her parent’s home as she waits for a waiver that would cover the cost of independent housing and in-home care.

“Every year that goes by, I wonder, ‘Why am I still on this list?’ ” said Abby. “I want to live on my own, have my own friends, and not have to spend the rest of my life dependent on my mom and dad.”

‘All hands on deck’

Jennifer DeCubellis, assistant commissioner of the Minnesota Department of Human Services, which oversees the state Medicaid program, acknowledged that the state “clearly needs to manage these dollars better.”

Under pressure from a federal judge and state lawmakers, her agency has begun to pool the funds, so that counties with long waiting lists can get help from counties with large reserves. And, after noting that many counties had large unspent accounts, the Legislature last year directed them to spend at least 97 percent of the money allocated to them.

“We need to very assertively make sure that those dollars are getting out the door … ” DeCubellis said. “It’s all hands on deck.”

State officials have made similar efforts in the past. Yet the waiting list continues to grow: It now exceeds 5,000 applicants and, adjusted for state population, is the nation's ninth-largest. A number of counties have underspent their funds by 10 percent or more, and have still not been ordered to change course, state records show. And while the new law requires counties to submit “corrective action plans” if they fail to spend enough of their money, those plans vary widely from county to county and are not subject to any automatic penalties for falling short.

“The system has no teeth,” said Shamus O’Meara, the lead attorney for a group of disabled families who sued the state in August over the issue. “We can throw more money at the problem, but without structural change, we would still have these waiting lists 10 years from now.”

The problem stems, in part, from a long Minnesota history of relying on counties to administer social services such as welfare and disability aid. One result is a patchwork system in which a family’s odds of getting this form of aid depend largely on where they live. Faribault County, for instance, held back 21 percent, or $1.3 million, of its allocated funds for a key waiver in 2014. Meanwhile, Olmsted County spent nearly 99 percent of its funds.

Worse, the state has sometimes sent mixed signals to county officials. About 15 years ago, the Legislature approved a temporary expansion of the program, with more money, that briefly eliminated the waiting list. Then, in 2005, it passed a law requiring counties to reimburse the state if they overspent their allocations. Many counties became extremely cautious in spending waiver money, and waiting lists swelled back to pre-2001 levels.

Perverse competition

Across Minnesota, the wait-list ordeal pits parents of disabled children against each other in a fierce competition to prove who is most deserving. Those with a high priority can move up the list and get approval within weeks. Others will wait a decade or more.

Steve and Maureen Hayes, who are in their 60s, said they felt like they had “won the lottery” after their developmentally disabled son, Brett, finally received approval this spring after a 10-year wait. For Brett, who is 24, it was a ticket to independence. The waiver covered the cost of a personal caregiver and, for the first time, enabled Brett to move out of his parents’ home in Plymouth.

“The waiver makes the difference between having a life and not having a life,” Steve Hayes said.

But like many successful applicants, the Hayes said they feel a sense of guilt seeing their son get tens of thousands of dollars in services, while friends with disabled children find themselves waiting indefinitely.

“It’s like this perverse competition,” Steve Hayes said. “You’re forcing me to tell you, year after year, how much I’m not able to take care of my own child. … Emotionally, it’s a draining experience.”

Some parents say that approval seems arbitrary, reflecting decisions by county administrators who never actually meet or speak to them.

NEEDING HELP: Brianna Hoover, 19, and her twin brother, Cory, shown at right with sister Jarelyn, 7, both need help with basic tasks. While Cory gets money to pay for therapy and outings that improve his social skills, Brianna – stuck on a waiting list – has been unable to live more independently.

Candy Hoover of Cambridge applied for waiver assistance for the twins she adopted years ago, Brianna and Cory, both now 19. Cory, who suffers from fetal alcohol syndrome, was approved for financial assistance in 2010, within weeks after he went into a violent rage, punching his fist through the window of their kitchen door, deeply gashing his arm.

Because of the meltdown, Cory was deemed to be in “immediate need” of in-home therapy to help him control his behavior. Today, Cory gets money to pay for outings that improve his social skills and therapy to control his temper.

Yet Brianna, who also was born with fetal alcohol syndrome and has the intellectual capacity of a 6-year-old, was stuck on the waiting list for five years. Brianna was finally approved for a waiver in October but has yet to receive any services.

The results are stark: On afternoons after school when Cory gets to go on community outings with a caregiver funded through his waiver, Brianna is stuck at home playing in her room. Though her adolescence is nearly over, her mother said, she still plays with dolls she had as a toddler. “It’s a game of roulette,” Candy Hoover said. “You shouldn’t have to gash up your arm on glass to get a waiver.”

Tough trade-off

Medicaid waivers first appeared nationally in the early 1980s as an innovative way to control spending while encouraging integration of adults with disabilities. The benefits were called “waivers” because they waived certain federal rules and allowed states to send Medicaid money directly to families, rather than spend the money on institutional settings, such as nursing homes and hospitals.

By 2008, waivers had become the largest single funding source for social services for people with disabilities. Last year, they covered home and community services for nearly 36,000 Minnesotans and cost $2 billion.

The strategy has lived up to its promise of efficiency. In Minnesota, the average annual cost of services for a developmentally disabled client on a waiver is $64,272, compared with $104,194 for those who receive care in an institution.

“Eliminating the waiting list is not just humane — it’s also the fiscally responsible thing to do,” said Steve Larson, senior policy director at the Arc Minnesota, a disability rights group in St. Paul.

Minnesota could reduce the waiting list if it simply spent less money on each successful recipient and spread the money around — as some other states have done, DeCubellis said. The risk is hurting one client while helping another, she added.

“We could easily go to no wait-list,” DeCubellis said. “But it would mean we would have to skinny down what people are offered. We do not think that’s the quality system we want in Minnesota.”

That means leaving in place a system that many families find mysterious and frustrating. Among the states, Minnesota’s process for approving waivers stands out for its lack of transparency. Applicants typically remain in the dark about why they are initially placed on a waiting list and when they can expect to get off.

“If I go to Disney World, I get my ticket and I can see who is in line,” said Bud Rosenfield, supervising attorney with Mid-Minnesota Legal Aid’s Disability Law Center. “But with the waiver, folks get their tickets, get in line and never move, and they are invisible to everyone else in line. It’s disheartening.”

As they wait, many parents of disabled children say they can practically hear the clock ticking. More than two-thirds of the developmentally disabled people on Minnesota’s waiting list are younger than 18. And for parents with grown children who still depend on them, the suspense is excruciating, said Pamela Hoopes, legal director of the Disability Law Center.

“Parents,” she said, “feel they are getting closer and closer to the edge of that cliff.”