A Medicaid patient lost the care he'd received for 20 years. 3 months later, he was dead.

Jason Clayworth , Jason Clayworth | The Des Moines Register

Show Caption Hide Caption Iowa medicaid restricted a quadriplegic's care, now his widow is speaking out Todd Mouw died in a specialty hospital after changes to his medicaid disrupted his in-home care. His wife, Cydni Mouw, believes those changes in his coverage contributed to his death.

ORANGE CITY, Ia. — Thirty-two years ago, a vehicle accident left Todd Mouw a quadriplegic, unable to feed himself and needing a ventilator to breathe.

Yet for decades he was able to live at home with the help of family, aided by medical staff who visited him daily to help provide 24-hour care.

That care abruptly ended when a for-profit company that Iowa hired last year to manage the state's Medicaid program announced that some of the staffers who had attended to Mouw all those years weren't qualified, and it wouldn't pay for the cost.

As he and his wife Cyndi futilely searched for qualified help, Todd's health dissipated. He had to leave his home for care, and on July 8 he died at age 53.

Now, Cyndi Mouw is speaking out, blaming her husband's death on Iowa's decision to turn over its Medicaid program to for-profit companies she believes are unilaterally denying or revoking medical services to potentially thousands of other disabled or elderly Iowans.

"If they're trying to do this because they need to save money? Well, find other places," Cyndi Mouw said. "And, yeah, I'm sure he's not the only one."

Her criticisms have echoed those of other families who complain that the private companies now managing the state's Medicaid program are denying care that the state once approved.

And the state's long-term care ombudsman said she has received hundreds of complaints from Medicaid recipients who are appealing decisions of the private managers hired by the state.

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A lack of care

Todd Mouw's problems began in March.

That's when Amerigroup, one of three companies hired in 2016 to manage Iowa’s Medicaid program, notified the family that it was terminating a longtime waiver that allowed some of Mouw's in-home workers to assist in such tasks as tracheostomy care.

Although some of the health provider firms and their employees had for nearly two decades provided Mouw's care and equipment, Amerigroup said they no longer considered the workers qualified.

Amerigroup instead required registered nurses to provide some of the services that had for years been provided by home-health aides.

The requirement for higher-qualified staffing left the family scrambling for months to find workers Amerigroup would approve for payment.

When Cyndi Mouw thought she had identified potentially qualified workers, she said weeks of administrative delays resulted in repeated missed care for her husband.

In the months that followed, Todd Mouw would sometimes go unsupervised because no staff had been approved to provide care for him, Cyndi Mouw said.

When she had to go to work, she would monitor her cellphone in case her husband alerted her to an emergency care issue.

Several times, she said, she found her husband nearly unresponsive because the passageway of his trachea tubes needed to be cleared of mucus buildup.

"When I got the calls, I'd put on my hazard lights and I'd fly home," she said, describing calls where all she could hear were the background sounds of his vent alarm system blaring warnings about her husband's dropping oxygen levels.

"There were a couple times when he was blue when I got home. But we had no other option."

In May, Todd Mouw developed pneumonia and was hospitalized.

Although he initially improved, he was never able to return home for lack of in-home workers.

Instead, he was sent to a facility in Sioux Falls, S.D., that specialized in respiratory ailments. He died at the facility about six weeks after he arrived.

Cyndi Mouw said her husband was happier at home. She believes he was provided better care there because his longtime workers were acutely aware of his needs.

“I do believe with all my heart this could have been prevented,” Cyndi Mouw said of Todd's death.

Complaints, lawsuit follow Iowa's money-saving plan

Iowa's government for decades had managed the state's Medicaid program, which serves more than 568,000 poor or elderly Iowans.

That changed last year when then-Gov. Terry Branstad decided to move the state's Medicaid management to three private companies, saying health care would improve and the state would save tens of millions of dollars each year. The companies help decide which health procedures Medicaid will pay for.

Three companies — AmeriHealth, UnitedHealthcare and Amerigroup — began managing the program in April 2016. The three companies were paid $1,041 to $3,313 a month for each Medicaid patient they oversaw.

Since then, hundreds of Iowans have logged complaints, many saying the companies have unfairly denied access to care.

In June, six Iowans with disabilities filed a federal lawsuit against Gov. Kim Reynolds, accusing the state of depriving thousands of Iowans that are part of the $4 billion program the legal right to live safely outside of care facilities.

Iowa's Medicaid system had for years granted hundreds of "exceptions to policy" that allowed people like Todd Mouw flexibility to hire specialized care and — in some cases — spend more money than is allowed for a standard Medicaid patient.

But under management by the for-profit companies, those exceptions disappeared.

Medicaid recipients can challenge the companies' decisions. And in hundreds of cases, recipients have sought help to resolve the disputes from the state's long-term care ombudsman — an independent agency within the Iowa Department on Aging that investigates complaints.

Todd Mouw's death is significant because he is an example of a disabled Iowan who had to be institutionalized following a for-profit company's decision, said Deanna Clingan-Fischer, the state's long-term care ombudsman. Mouw had contacted her office weeks before his death.

Clingan-Fischer said her office doesn't know the number of people it has helped who were institutionalized because of a decision by one of the private companies. It's part of a larger issue of reported service deficiencies that her staff finds concerning.

"It's unfortunate they couldn't maintain his level of care," Clingan-Fischer said of Mouw, noting her office is no longer reviewing the case because of his death.

Serious claims have also been made against the companies in other states.

Multiple health providers claim in a lawsuit filed in Los Angeles federal court that WellPoint, which is a part of Amerigroup, orchestrated a scheme to reduce reimbursement payments. Portions of the lawsuit, first filed in 2009, have been dismissed, but others are still being litigated.

Among the plaintiffs are medical groups from California, Connecticut and Georgia.

UnitedHealthcare, in turn, is accused of using illegal and deceptive practices to deny or limit treatment for patients with mental illness, according to a class-action lawsuit filed by the New York State Psychiatric Association.

A Des Moines Register investigation in 2015 found that each of the three managed-care companies operating in Iowa has been accused in other states of serious service and administrative errors, including denial of medical services to poor residents.

The Register documented hundreds of millions of dollars in fines or settlements and more than 1,500 individual sanctions in the past five years against the companies.

Companies say they're helping people

Starting in July, the Register made multiple attempts to ask Amerigroup representatives questions about Todd Mouw's case.

Cyndi Mouw signed waiver forms requested by Amerigroup to allow the company to speak about her husband's care.

But on July 31, Amerigroup said it additionally needed records showing Cyndi Mouw as the executor of her husband's estate. Cyndi Mouw said she had no need to be appointed executor, since her husband had no assets, and she couldn't afford the court costs.

An Amerigroup employee assigned to work with the family did make several attempts to help resolve the issues linked to her husband's care, Cyndi Mouw said. She is left uncertain whether the problems lie mostly with Amerigroup or the state.

Amerigroup spokeswoman Denise Malecki said other members would testify that they wouldn't have been able to obtain the health services they needed if it wasn't for her company.

"It has seemed as if distaste for the new Iowa Medicaid managed-care program is the popular opinion, but we are seeing otherwise," Malecki said. "There are a lot of people who have been helped and willing to share their stories to let others know that help is available."

The Register requested the names and contact information of the people Malecki referenced. She did not respond.

Earlier this month, Gov. Reynolds released a statement noting Iowa Medicaid patients' satisfaction was ranked among the highest in the nation, according to a J.D. Power survey conducted in July.

"Medicaid modernization improves access, gives patients more choices and brings accountability to the program," Reynolds said in her statement.

J.D. Power declined to identify who paid the company to use its survey results. Brenna Smith, a spokeswoman for Reynolds, said it wasn't the state.

Community living vs. institutions

Department of Human Services spokeswoman Amy McCoy said she couldn't speak to specifics about Mouw's case, partly because of the pending class-action litigation filed against the state by the advocacy group Disability Rights Iowa.

But McCoy said "cost neutrality" plays a part in Medicaid care decisions.

The term is used to describe federal rules that say the aggregate cost of providing healthcare to a Medicaid member will not exceed the cost of an institutional placement.

In other words: If it's cheaper to institutionalize a person, that's generally the care that must be provided.

"Our goal is to successfully and appropriately serve Iowans with mental health and disability needs in the least restrictive setting possible while remaining good stewards of taxpayer resources," McCoy said.

Cyndy Miller, an attorney for Disability Rights Iowa, said McCoy's response does not consider federal laws such as the Americans with Disabilities Act and the Olmstead mandate.

That's a law and a court ruling that have determined that people with disabilities have a right to live in the community, rather than in institutions.

Miller said there are questions about data the state uses to calculate "average aggregate costs," specifically whether the data is too old to properly set rates.

"Institutionalization has been increasingly disfavored by the courts, giving states a greater incentive to pursue waivers and keep individuals with disabilities in their communities," Miller said.

Cyndi Mouw hasn't reviewed all their bills, but she said she's confident her husband's care was far cheaper at home than in the long-term hospitalized setting he lived in during the last weeks of his life.

Mouw said her goal is not to file a lawsuit or make Amerigroup and the state look bad. Rather, she said, she wants her husband's death to serve as a wake-up call about serious problems in Iowa's privately managed Medicaid system.

She recalled her husband's "food ministry," in which he planned meals and directed his family to regularly cook and serve needy families in his community.

"Don’t get me wrong, his death was inevitable," Mouw said. "But I do believe with all my heart this could have been prevented and he would have lived longer."