Devil is in the details

Screw up small stuff, KanCare,
and how can we trust you when it really matters?

Freelance writer/editor

Eighteen-year-old Neil Carney of Wichita, Kan., is profoundly autistic and severely mentally retarded. He has tried to eat charcoal briquettes and light bulbs. He can be aggressive.

Neil lives in a beige single-family home with a professional caregiver. His parents, Pat and Aldona Carney — and thousands of others like them in Kansas — have been given a one-month reprieve by federal Medicaid officials to delay a fate they fear is inevitable.

Come Feb. 1, Kansas’ Medicaid managed-care system – known as KanCare — is expected to take charge of all home- and community-based services for about 8,500 developmentally disabled people, most of them adults.

Three for-profit national insurance companies that run KanCare will be responsible for a statewide program that they’ve never managed in Kansas — or elsewhere. Critics fear for-profit care will destroy a system families and advocates think works well.

While Kansas will become the first state to expand its Medicaid program in such a big way, KanCare is being watched closely elsewhere. Louisiana and New Hampshire are considering moving in the same direction.

As goes Kansas, so goes the nation.

“This is an unprecedented model. No state has ever taken a developmental disability population and placed it in an arrangement like this, with an out-of-state managed care system, all at once,” said Rocky Nichols, executive director of the Disability Rights Center of Kansas, an independent legal advocacy group. “It’s almost like throwing everyone into the deep end of the pool,” he said in an interview with The Washington Post.

Aldona Carney agrees. “This type of model has not been done in any other state. We’re worried that the managed care companies don’t have a clue about what it takes to keep developmentally disabled people healthy and safe in their home.”

Kansas officials have assured parents and advocates that services will remain unchanged and that payment rates to agencies that provide care won’t be cut. But many are skeptical. They fear managed care companies will seek to jack up profits by reducing services or driving some small providers out of business.

And how can parents like Pat and Aldona Carney believe state soothsayers when KanCare officials can’t even get the small stuff right?

On Jan. 17, Aldona Carney called her son Neil’s managed-care organization for the third time to make sure her husband and her son’s caregiver were authorized to speak on Neil’s behalf to the Sunflower officials who manage his care.

At first, a Sunflower rep. said, “no,” the two had not been authorized. Then, a half-hour later, the same Sunflower employee said, “yes,” the requisite paperwork had been turned in. But because Aldona Carney did not write an end date on her son’s paperwork, the document never was processed.

“I didn’t put an end date down on the form because Neil will always need someone to speak for him,” Aldona Carney wrote to the Squeaky Wheel.

The fiasco began in March, and now, nearly 11 months later, the state is asking Aldona Carney to resubmit the document for the fourth time over two years.

“Needless to say, this is very frustrating and time consuming. My husband suggested that I put the end date either when he dies, I die, or Neil dies,” Aldona Carney said. “How is that for an end date?

“Do you really believe KanCare is ready for the intellectually and developmentally disabled population if they can’t even get a simple authorization form” processed correctly?” Aldona Carney asked rhetorically.

The paperwork snafu is just one of hundreds of complaints caregivers, parents and guardians have lodged with the state, with many of those concerns yet to be resolved with less than 14 days before the I/DD community is to be folded into KanCare.

And what about those with I/DD who are their own guardians? Aldona Carney wonders. How will they be able to navigate the confusing phone system set up by the managed care organizations?

When calling, the system rapidly offerers nine different choices in which to choose, confusing Aldona Carney, let alone a person with an intellectual or developmental disability trying to get help or request an appeal for denial of services, a process expected to begin Feb. 1.

Many states are scrambling to place large numbers of people on Medicaid – the state-federal program for the poor and disabled – into managed care in hopes of cutting costs and improving quality. Nearly 30 million Americans on Medicaid are in private managed care plans.

By next year, more than two dozen states are expected to have set up programs to transfer frail elderly, mentally ill or physically disabled people into managed care for home- and community-based services.

But in most states, the developmentally disabled, those cerebral palsy, Down syndrome and autism, have been excluded from managed care for these services because of their special needs.

In Kansas, individuals can choose a case manager, who visits them at home and coordinates their care. In some cases, those relationships go back decades. While these organizations will continue to determine what services clients are eligible for and case managers will work with families to arrange that care, ultimately the state MCOs will be responsible.

“There is a great deal of fear in the community that these big private health plans don’t know much about this population,” said Maureen Fitzgerald, disability rights director for The Arc, a national advocacy organization for the developmentally disabled. “These are such vulnerable people. Mistakes that are just inconvenient to some can be devastating to them. If the home care person doesn’t show up, you could be lying in your bed all day. It’s kind of scary.”

Only a handful of states — including Michigan and Vermont — have moved the developmentally disabled into managed care for long-term services. They’ve mostly relied on existing networks of community-based nonprofits or county agencies or have made themselves the managed care organization. None have turned exclusively to national managed care companies.

And that’s exactly what Kansas Gov. Sam Brownback did when he decided to transfer nearly all of the 380,000 people on Medicaid into KanCare, starting Jan. 1, 2013.

Brownback, a far-right Kansas Republican, has said that KanCare will improve care coordination and reduce growth in Medicaid spending by $1 billion over five years.

Although the frail elderly, physically disabled and mentally ill are now getting long-term services through KanCare, inclusion of the developmentally disabled was delayed until Jan. 1 — and again until Feb. 1 — following bitter protests.

Kansas State Rep. Nancy Lusk, a Democrat from Overland Park, said she received so many “passionate e-mails” opposing the state’s plan that she put together a video highlighting the stories of families who would be affected, posted it online and sent a message to her colleagues.

Shawn Sullivan, Secretary of the Kansas Department for Aging and Disability Services, has said providers who are fearful of change had gotten families riled up unnecessarily.

He said families and advocates need not be worried because clients will be able to keep their case managers and agencies that provide services won’t have reimbursements slashed. The major difference, Sullivan said, is that the insurance companies will hire care coordinators who will work in conjunction with case managers and providers.

Debra Lipson, a senior researcher for Mathematica Policy Research, a nonpartisan think tank, cautioned that Kansas’ blueprint presents “huge challenges.”

“They’re entering into virgin territory,” she said. “They don’t have a lot of models to follow, and it’s a highly vulnerable population, and therefore you can’t skimp on oversight. And there’s a risk when you’ve got national companies that don’t bring a tremendous amount of experience in this area.”

The health plans say that while they may not have much experience, they have been handling similar services for physically disabled and elderly members. They also have been hiring workers and managers with expertise in developmental disabilities in Kansas.

But some family members say they’re not optimistic because they’ve already experienced problems with KanCare on the medical side.

Kay Soltz, of Wichita, said her 32-year-old son, Zachary, was initially assigned to a pediatrician as his primary care doctor when KanCare launched. After she complained, the health plan assigned him to a doctor located 20 miles away, and Soltz said she jumped through more hoops to get it changed.

Soltz, 63, said she has “no confidence” in the health plans taking over management of long-term care for Zachary.

“At my age, I’d like to think my son has something stable, something that will protect him if I’m not here,” she said. “Boy, I don’t feel that way at all.”

KanCare has also come under attack from hospitals and some providers, who have charged that the health plans have improperly denied or delayed reimbursements and created serious financial and bureaucratic obstacles for them.

“It’s very personal and intimate direct care – and home care workers are not paid very much. For small providers, if they don’t get paid, they don’t stay,” said Tom Laing, executive director of InterHab, an association of Kansas providers. “The system was running very well, and now it will be operating on flat tires and worn-out spark plugs.”


You can reach Finn Bullers, policy adviser for the Greater Kansas City Spinal Cord Injury Association, at: or 913-706-2894.

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: