A Medicaid waiver system so confusing that families hire guides

Stacey Vogele was weaving through rush-hour traffic in her white SUV, searching for the house of Sam, a 21-year-old with Down syndrome and developmental delays.

It had already been a hectic morning. Vogele had cared for her 18-year-old daughter, who has a severe neurological disorder and was recovering from back-to-back seizures. Before getting in the car she had fielded a call from a county official who told her she needed to submit more paperwork for one of her clients, a mother in desperate need of home nursing care for a newborn with cerebral palsy.

Now, as she drove, Vogele was calmly rehearsing the points she would make to Sam and his parents, who had just begun the process of applying for a Medicaid waiver.

"I know they're going to be stressed out and overwhelmed, so the key today is to help them understand that's normal and to believe in their own power," Vogele said, as she pulled into the family's driveway.

Vogele is among a growing army of consultants, known as support planners, who help parents of medically fragile children navigate the maze of rules and regulations that make up Minnesota's system of Medicaid waivers. They explain disability benefits, help fill out paperwork and write support plans, charging $40 to $65 an hour for their skills.

Their work is subsidized by taxpayers — rolled into the other expenses for which families can use waiver money. And it would not exist were it not for the system's complexity.

"In a perfect world, our profession would not be necessary," said Scott Price, a support planner from Andover. "But we have created a waiver system with so many layers of complexity that most parents don't have the wherewithal to go it alone."

Minnesota has nearly 1,000 of these state-certified consultants, and those with a reputation for vigilance have hundreds of paying clients. Vogele herself has nearly 100 client families across the state.

Like many support planners, Vogele has a child with disabilities and can recount, in fine detail, her own grinding struggle to get help. A former attorney, she was not even aware that waivers existed until soon after Tana's sixth birthday — a reflection, she says, of the failure by state and county agencies to promote the program to busy parents. Once enrolled, Vogele finally had enough funding to stay home and care for Tana, who is unable to speak, eat or walk on her own.

But she also had multiple run-ins with county officials.

In 2013, Tana began attending art therapy classes with other children at a center near their home in Cottage Grove. Vogele assumed the class would be covered under her daughter's waiver, because it helped improve her fine motor skills and communication skills. Yet Washington County declined to cover the class, citing a lack of medical necessity. Vogele fought a losing battle with the state to overturn the decision.

She later discovered that such classes were routinely approved in other counties.

"It shouldn't matter whether you're in Ely or Eagan. You should be able to get similar services based on your qualifications," Vogele said. "But the reality is we have 87 different counties with 87 different guidelines for waivers."

The experience so frustrated Vogele that she took a course to become a certified support planner and began devoting her free time to helping other families apply for one of the state's four waiver programs for individuals with disabilities.

"I would not be doing support planner work had I not had Tana," Vogele said. "I wouldn't know half this stuff. I wouldn't know any of the jargon. And I wouldn't know any of the hassles that families continue to go through had I not lived it."