'No child with a terminal illness should have to wait for Medicaid services'

Emily and David Gold keep the small bedroom where their daughter Lizzie once lived exactly as she left it. Her favorite flowered dress hangs on the front door as if she were still alive.

This is where the Golds cared for Lizzie — feeding her, lifting her in and out of her bed, and rushing to clear her airways with a suction tube at all hours of the day and night.

Born with a debilitating chromosomal disorder, Lizzie suffered as many as 200 seizures a day and was so fragile that a bad cold could have killed her within hours.

Last November, when Lizzie was 7, the Golds decided they needed help. They requested a coveted form of medical assistance, known as a "waiver," through Hennepin County. The Golds repeatedly stressed the urgency of their daughter's case. Emily Gold recalled sobbing as she checked the box marked "terminal" on their application.

Months passed. The Golds heard nothing.

After about a dozen phone calls, a county social worker finally said in March that someone would contact them to schedule an evaluation at their home in south Minneapolis. More weeks passed. Lizzie's condition worsened.

"We were at the absolute limit of what we could do as parents," Emily Gold said.

One morning in early May, their worst fears were realized. Lizzie was rushed to Children's Hospital in Minneapolis with pneumonia. She died four days later of a collapsed lung.

Yet even now, months after Lizzie's ashes were buried in a butterfly garden in the family's yard, the Golds have yet to receive a formal response from the county.

Their ordeal reveals another frustration shared by many Minnesota families who have dealt with the state's system for helping people with disabilities: delays that can stretch weeks or months.

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Minnesota law requires counties to conduct face-to-face eligibility assessments with applicants within 20 calendar days of a request. But a Star Tribune review of state records shows that counties are routinely failing to meet that deadline. During the first half of this year, nearly 30% of the assessments for people with complex medical needs were finished late. In Hennepin County the figure was closer to 60%.

Jennifer DeCubellis, deputy county administrator for Hennepin County, acknowledged the county has struggled to keep up with an increase in the demand for help. Since 2016, the county has hired 102 trained assessors to speed up assessments and reduce backlogs, and adopted a series of process improvements, such as grouping cases geographically so county workers can reach clients faster.

"We are always asking: How do we do this smarter, better, faster?" DeCubellis said. "We we know it's critical to getting to the person to help them stay at home and thrive at home."

State officials, too, have tried to reduce delays. In 2016, under federal court pressure, the DHS implemented a series of changes that enabled counties to eliminate prolonged waits for waiver services. More than 5,000 Minnesotans who had languished for months, even years, on county waiting lists finally got assistance.

Nonetheless, even those with life-threatening health conditions sometimes endure long waits. That's because many counties lack any system to prioritize applications based on need. Adults with a developmental disability, such as autism, are treated with the same urgency as children with terminal illnesses. "There should be a system to triage these cases," said Sen. Jim Abeler, R-Anoka. "No child with a terminal illness should have to wait for Medicaid services."

Turnaround times have improved in recent years, but Minnesota has still missed the federal standard repeatedly in the past four years.

And the waiting doesn't end with a completed assessment. In dozens of interviews, parents with special-needs children report waiting six months or longer to get the results and for funding to kick in.

"Families put an extraordinary amount of care and time into these applications, only to be stuck in indefinite limbo," said Carolyn Allshouse, executive director of Family Voices of Minnesota, a grassroots disability advocacy group.

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From her kitchen window in Little Canada, Tracy Umezu can see the spot in her backyard where she once dreamed of rocking her daughter, Charlotte, in an adaptive swing set.

Charlotte was born in March 2014 with a genetic disorder that left her unable to breathe or move on her own. She spent most of her first year in a hospital, kept alive by a breathing machine. When Charlotte was finally stable enough to come home, the Umezus requested a waiver. It took Ramsey County 13 months to complete her assessment and approve a package of services.

Charlotte died of respiratory failure less than a month after the county approved funding for a swing set and a wheelchair ramp.

A spokesman for Ramsey County said the county has taken a number of steps recently to reduce wait times for assessments, including shifting employees from other areas and contracting out some of the evaluations. Even so, he acknowledged that these steps are "short-term solutions that are not sustainable" and said the county needs either more funding or changes to the state requirements.

Every so often, when the anger and remorse become overwhelming, Umezu retreats to a special room where she keeps a box of the clothing Charlotte wore just before she died.

Sometimes she presses a shirt of Charlotte's to her nose. The scent brings back vivid memories.

"One thing Charlotte loved more than anything was movement," Umezu said. "That swing would have brought her so much pleasure and joy in the last months of her life, but she never got to use it."