One woman's fight to expose quality-of-care investigations in Minnesota

From her home in Plymouth, Sheila Van Pelt types on a laptop with two scraps of paper taped below the keypad. One says, "Who are the heavy hitters?" The other: "What public purpose does it serve?"

The messages fuel her relentless mission to know the results of an investigation into her mother's care in an assisted-living center before her 2011 death.

Van Pelt, who keeps her mother's obituary pinned over her desk, believes family members like her have the right to know if their loved ones were the victims of negligent care. But HMOs do their own inquiries when people complain about the quality of their care, and for years, state officials and legislators have said these investigations can remain confidential.

Van Pelt's yearslong campaign at the Minnesota State Capitol underscores the enormous challenges facing everyday citizens in an era when powerful interest groups are pushing for and defending laws that ensure greater levels of secrecy. "I am allowing myself to be used to showcase something … shining a light on something that people want to keep in the dark," she said.

Van Pelt arrived at the Capitol most days during the last legislative session lugging a shoulder bag overstuffed with documents that weighed down her slight, 5-foot-3 frame. She spent her days pressing legislators for meetings, peppering them with e-mails and confronting state officials at public events.

The stay-at-home, 54-year-old mother of four is a rarity around the Capitol: a single-issue, unpaid activist among 1,450 paid lobbyists who represent everything from teachers unions to major utilities to dog breeders. Van Pelt has won the support of a few key legislators, but she acknowledges that she struggles to strike the balance between persistence and pestering, knowing that some in the Capitol are looking for reasons to ignore her.

A spokesman for Gov. Mark Dayton said he wants more "transparency and accountability" in HMO quality-of-care probes, but the governor did not support a proposal to force insurers to share complaint investigations with family members.

The change sought by Van Pelt "seems so reasonable," said Sen. Jim Abeler, R-Anoka, one of her allies in the Legislature. Still, "the quiet opposition is very powerful. That's why things don't get done here."

Van Pelt's dealings with state officials, legislators and health care providers have produced so many documents that she keeps boxes of them in a rented storage unit. It began nearly seven years ago, after Van Pelt walked into an assisted-living center and found her mother suffering a catastrophic stroke. Sheila Anne Pietig died six months later. She was 87.

Since then, Van Pelt has filed multiple complaints about what she saw as a failure of basic care. No provider or investigator has reached the same conclusion, but Van Pelt has not been able to see the full results of those inquiries.

Along the way, Van Pelt concluded that this is a systematic problem.

"It's not just about me, or my mom's situation," Van Pelt said. "She's a sacrificial lamb."

In 2013, Van Pelt scored a rare victory, persuading the Legislature to require that family members be consulted whenever the state investigates suspected abuse or neglect of vulnerable adults.

She has also suffered setbacks. The Minnesota Department of Health initially told her that she could appeal the outcome of an investigation into her complaint that HealthPartners botched her mother's care.

Months later, the agency told her that the law in fact does not allow her to appeal or find out anything about the outcome.

Then, in early 2016, she learned that the Department of Health had destroyed records about its investigations into her mother's assisted-living center. Van Pelt had sought the records for more than three years. The state blamed it on a misunderstanding.

Last year, the Legislature directed HMOs to provide the state more data on quality-of-care complaints but stopped short of making them reveal more information to the public.

Van Pelt was determined to fix that. First, she pushed for opening those investigations. Then she decided to learn as much as she could about what the state knew about her mother's case and which political forces might be working against her.

She asked for records from two state agencies and the governor's office about herself and her mother, hoping to find documentation of conversations or communication she might not know about.

In November, Van Pelt brought a bag of candy to her meeting with Lauren Gilchrist, one of the governor's top advisers.

Her audio recorder was rolling. "I've had more than my share of bad behavior going on, and I can't take people at their words. … I have deflection, nonanswers, circular answers …"

Gilchrist gently interrupted. "I feel very grateful to you for the issues that you brought forward, and you provided me with a binder that I still have to this day that really helped us draft the legislation that passed last year. I know it didn't go far enough for you. It would be helpful for me to understand what you hope to get out of this meeting today so that it's productive."

Here we are again, Van Pelt said, back to square one. Having to explain, once again, after five years, why she's here. So she did.

What public purpose does it serve to keep investigations of HMOs secret? She asked that question of Gilchrist three times.

I'll get back to you, she said.

Eleven days later, Van Pelt was waiting outside a hearing room when she spotted Health Commissioner Ed Ehlinger. She knew he didn't want to talk to her. He had sent her an e-mail in April saying that the department would no longer answer her e-mails or calls.

She placed her body between Ehlinger and the door. He walked past her. What about the four data practices requests I've filed? she asked. She stayed with him, her digital recorder rolling. "Our attorneys have given you feedback and informed you that we are not going to be responding," Ehlinger said.

He was moving fast, down the 36 steps of the grand staircase, then back around the hallway. She would not let him go. "I respectfully ask you to at least be respectful of me. You're not. You're running and hiding." They reached the doorway to the stairwell for the garage. Van Pelt gave up her pursuit.

She was shaking.

In early January, Van Pelt took a seat in Abeler's office and described her status among the legions of paid lobbyists and state officials. "I am an everyday citizen," she said. "They bury me."

Abeler said he remained committed to her goal and was skeptical of HMOs policing themselves on the issue of patient care and keeping the results secret.

"They shouldn't investigate themselves," he said. "At least a private person should get to know" the results of an investigation, he said. "They would look stupid if they're fighting that."

Outside Abeler's window, the newly refurbished Capitol gleamed in the sunshine.

Abeler offered more practical guidance. The governor has a reception in a few hours. Why not reach out to him directly?

An hour later, Van Pelt clutched an envelope as she waited inside the ornate, gold-trimmed Governor's Reception Room. Dayton greeted people in line and posed for pictures.

When she reached the governor, Van Pelt shook his hand and launched into her concern about waiting, for weeks, for data requests that should have been answered in 10 days.

The governor leaned over to her. "We should be fulfilling those requests." He summoned an aide, who fetched a deputy chief of staff, who took the envelope, which contained a copy of Van Pelt's data requests.

It felt like a breakthrough.

In early March, in a hearing room in the Senate Building, Van Pelt finally had her moment to speak.

"For the record, to make this really simple and to the point, what this bill is going to do is start giving a voice to the complainant in Minnesota Department of Health HMO quality-of-care complaints," she said.

Afterward, the chair of the committee asked the room whether the HMOs wanted to give their perspective.

No one responded. The bill passed unanimously on a voice vote.

"The concerns [Van Pelt] raises I totally understand, wanting to know where there's errors, where there's problems, and that it doesn't happen again to anyone else, is completely human and correct," Jim Schowalter, a lobbyist for the Minnesota Council of Health Plans and Dayton's former budget chief, said in an interview.

But that has to be balanced with HMOs' desire to improve patient care with peer review, in which outside medical professionals confidentially evaluate and critique the care, he said. If those outcomes are shared with families, "in some cases, the family may then publicize or use that information more broadly in a way that ultimately keeps or incents doctors or other providers from reporting future problems," Schowalter said.

Van Pelt's bill never got another hearing. There was no big committee vote or a roiling floor debate. The bill simply died.

Abeler said Van Pelt ran headlong into the "invisible architecture" of the Capitol, where silence can be as obstructive as vocal opposition.

When Van Pelt feels outmaneuvered or defeated by the legislative process, she takes a seat on a bench in the Capitol rotunda. "What am I doing here?" she asks herself.

The answer is always the same, as she recently told her husband, Jeff. "I'm in it too far to quit," she said.

Van Pelt has sent more than 5,000 e-mails during her lobbying campaign. She has made 165 requests to HealthPartners alone for information about her mother.

After the regular session wrapped up in May, legislators returned home to reconnect with family and with voters and to recover after a bruising budget fight.

Van Pelt is refining her approach, focusing on prying more records out of her state government.

Back home in Plymouth, with her mother's obituary pinned up nearby, Van Pelt opened her laptop. And as she had hundreds of days and nights before, started typing another e-mail.

@jameselishiffer • 612-673-4116