Quadriplegic spent hours in a dirty diaper after his Medicaid services were cut

Throughout last summer, 25-year-old quadriplegic Louis Facenda Jr. spent as much as half of each day in a dirty diaper after his caregiver services provided through Iowa's Medicaid program were dramatically cut.

It's a result of what advocates for those with disabilities say are frequent decisions to cut Iowans' services following the state's move last year to transfer management of its Medicaid program to for-profit companies.

"Medicaid issues can be tough, but an issue about daycare for a quadriplegic man is not so tough," said Anne Kinzel, former executive director of Iowa's Legislative Healthcare Reform Commission. "To me, this is just crazy, and it's cruel."

Most of Facenda Jr.'s Medicaid services were cut in July, said Joann Facenda, his 64-year-old mother and primary caregiver. While she can provide much of her son's care, a degenerative disc makes it impossible for her to lift him to change his diaper, she said.

The cuts ended payments for at least 16 visits each week for an in-home care program that helped the family dress, feed and change the diapers of Facenda Jr. two to three times each day.

Also ended was a service through Link Associates, a nonprofit group that helps provide day habitation for hundreds of people with intellectual disabilities. Link had provided Facenda Jr. with care for six hours each weekday the last four years.

His prescription medication payments also were halted.

As a result, Louis Facenda Jr. was left home without care, outside of his mother's help, for as long as 12 hours at a time.

And she said she can't afford to pay for the services that Medicaid once provided or alternative care, noting that she and her son live on a combined income from Social Security disability payments of about $1,500 a month.

Anita McGehee, an in-home caregiver who said she's gone unpaid for much of her recent work assisting Facenda Jr., confirmed his situation, calling it "devastating."

“Who do you blame? Who fixes this stuff?” an exasperated Joann Facenda of West Des Moines asked about her son's situation.

How did this happen?

At the heart of the issue is a statewide system enacted in April 2016 that pays private companies to manage the state’s $4.2 billion Medicaid program.

The program provides health care to more than 600,000 poor and elderly Iowans.  

Facenda Jr. has been on the program for decades, and his mother credits it with sustaining his life.

He was born prematurely and has cerebral palsy, a neurological disorder that affects movement and muscle coordination. He is physically and intellectually disabled, unable to walk or perform most daily functions without assistance.

His speech is fragmented, unintelligible for many people outside of his mother and some of his care workers.

For more than a year following Iowa's switch to privately managed Medicaid, there were no major service changes for Facenda Jr.

But then an employee from AmeriHealth — one of the three companies hired to manage Iowa's Medicaid program — called in the late spring to ask Joann Facenda questions about her son's condition and services.

She said she was assured during that call that the review was routine and everything was OK.

But she said a care provider called her July 11, notifying the family that future payment of much of Louis' in-home services had been denied.

She soon discovered his day services at Link Associates also were cut.

She said AmeriHealth provided no paperwork before terminating the service and has never cited a clear reason for the cut, which she called perplexing because her son’s condition and their financial situation hadn’t changed.

“It wasn’t like ‘Well, we’re giving you a week or a little time to get help.' It was immediate,” Joann Facenda said.

Ten days' notice

State contracts mandate the companies provide Medicaid recipients at least 10 days' notice before taking action that would hurt their service.

But Matt Highland, a spokesman for the Department of Human Services, noted situations where that might not occur, such as the expiration of an exception to standard Medicaid policies. Facenda Jr. had such an exemption for his in-home services. 

Public records show multiple examples where judges have ruled that the private companies have failed to fulfill basic notice and due process requirements related to Medicaid denials.

In September 2016, for example, Iowa Administrative Law Judge Kristine Dreckman reversed Amerigroup's denial of a drug to alleviate attention-deficit disorder in a 9-year-old boy, noting that the company failed to inform the family of their right to appeal.

"Due process, at its most basic level, requires notice and an opportunity to defend," Dreckman ruled.

AmeriHealth won’t talk publicly about the case. The company declined Joann Facenda’s offer to sign confidentiality waivers to allow AmeriHealth representatives to speak about the case with The Des Moines Register.

“While we’re not going to comment on this specific case," AmeriHealth spokesman Joshua Brett said. "What we can share is that each member’s health is evaluated individually, and appropriate medical criteria are used in all situations.”

A lack of flexibility

Facenda also granted officials from Link Associates, her son's day service provider, permission to discuss the matter with the Register.

Director Linda Dunshee confirmed Facenda Jr.'s services had been cut, although she didn't know the specifics. But Dunshee said one reason may have been an issue with paperwork, a problem she sees with increasing frequency.

In previous years, case managers that worked for the Iowa Department of Human Services would access its eligibility database and could see when deadlines were approaching to assist people, she said.

If there were missed deadlines or questions about a Medicaid recipient's services under the state-managed system, Human Services generally worked with the recipient and their guardians to avoid a gap in coverage.

But that is not an option in the new system, Dunshee said.

"There's no longer any sort of supportive flexibility with that process," Dunshee said.

Dirty diapers

The two months following the July notification that services were being cut were harsh, resulting in her son often having to sit for hours in dirty diapers until help arrived, his mother said.

Joann Facenda said she has spent hours calling AmeriHealth, as well as state and federal officials, seeking help in reversing the decision to cut much of her son’s services.

A caseworker did get her son's prescription drug coverage restored within two weeks so that he didn't have to go without. But in-home care and day services remained cut for six weeks.

AmeriHealth notified the family in a letter dated Aug. 24 that Facenda’s services had been restored.

McGehee, one of the caregivers, said she continued to perform some of her services for Facenda Jr. even though she went unpaid for much of the summer, forgoing the $12 to $18 per hour she usually receives.

"I have a brother who is handicapped like Louis," McGehee said. "I've seen what he’s gone through. I don't want to see Louis suffer because he can’t get the help he needs."

Kimberly Weber, an executive of Iowa Home Care, whose employees are among those that assist Facenda Jr., said she believes the denial is part of a systemic approach that robs Iowans with disabilities of medically necessary care.

Iowa Home Care has continued to provide care it believes is life-sustaining in "hundreds and hundreds" of situations, even though the companies are denying payment, Weber said.

She estimated that her company is owed more than $1 million by the for-profit companies who manage Iowa's Medicaid, with the majority from AmeriHealth.

“When is this nonsense going to stop? We cannot continue to put people’s lives at risk," Weber said.

Facenda Jr.'s older sister Kristi Quinones, 38, of Des Moines helped her father, Louis Facenda Sr. of West Des Moines, with Facenda Jr.'s care after his services were cut.

"They (AmeriHealth) could have questioned my brother's services without just cutting him off," Quinones said. "I think that is messed up."

Systemic denials?

The denial of Louis Facenda’s Medicaid care appears to follow a pattern, said Cyndy Miller, legal director of Disability Rights Iowa.

The three companies that began managing Iowa's Medicaid program in April 2016 — AmeriHealth, UnitedHealthcare and Amerigroup — generally are paid $1,041 to $3,313 a month for each Medicaid patient they oversee.

Medicaid recipients such as Facenda traditionally have been provided services through a home- and community-based waiver that allows them to receive services that otherwise would be provided in an institution.

But now, the private companies are independently requiring frequent reauthorization of waiver services — sometimes every 60 days — and they often conclude that all or parts of the requested services are not medically necessary, Miller and Iowa's Long-Term Care Ombudsman said. 

And, as a result, services are cut, Miller said.

Even when an administrative law judge rules in a Medicaid client’s favor, the private companies can reassess the client a few months later and again deny the same service, Miller said, noting a recent report from Iowa's Long-Term Care Ombudsman that calls the issue a "systemic trend."

It’s an issue Iowa Ombudsman Kristie Hirschman — whose office is separate from the Long-Term Care Ombudsman — has also encountered. 

"It's just mind-boggling," Hirschman said.

Miller’s group in June helped six people with disabilities file an ongoing federal lawsuit accusing the state of depriving thousands of Iowans the legal right to live safely outside of care facilities, which is one of the directives of Medicaid.

Miller alleges the companies have systematically used the reviews to justify cuts to services and save money.

“It’s what we call the 'cycle of futility,'” Miller said. “A person with an intellectual disability is not going to miraculously recover in 90 days.”

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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.

In Facenda Jr.'s case, his mother estimates AmeriHealth saved thousands of dollars from his service cuts that she warned could have caused serious, costly health complications.

“They’re not helping by taking service away,” Joann Facenda said. “They’re not helping by forcing people to have to go into facilities.”