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Disabled Communities Prepare For KanCare Inclusion

Alex Smith

Editor's note: The Centers for Medicare and Medicaid Services did not approve the inclusion of long-term services for the intellectually and developmentally disabled into KanCare, according to a report published this morning by the Kansas Health Institute. We will update this post as more information becomes available.

The original story, reported prior to the report, starts here:

In the final days of 2013, thousands of Kansans and their families are bracing for a huge change in how they receive Medicaid from the state. Kansas is set to move long-term services for the  intellectually and developmentally disabled into the KanCare system, pending federal approval.

Under the KanCare system, three private managed care companies administer the state’s Medicaid services with the goals of saving money and improving health. But based on KanCare’s short history, many worry the change might lead to significant cuts.

The weekend before Christmas, 36-year-old Nicholas Little was home at his parents’ house in Olathe, Kan., talking over holiday plans with his mother, Shelly. Nicholas stays with his parents just about every weekend. During the week, he lives at a house with four other adults plus a professional caretaker, who helps with hygiene and looks after the housemates. Nicholas was born with an intellectual disability, and Shelly says in-home services make it possible for him to do contract work, assembling basic electronic or computer parts.

“He has a lot of self-worth and a lot of pride with respect to being able to kind of maintain his own world and his work,” she says.

Nicholas has received services paid for by Kansas Medicaid for about 15 years, and he will need long-term services for the rest of his life. Shelly says the state system has worked pretty well, and she became concerned about two years ago when Gov. Sam Brownback announced his plans to privatize Medicaid.

“My first reaction was ‘why?’ I couldn’t figure out why things needed to be changed,” says Shelly. 

KanCare Concerns

“KanCare is a solution looking for a problem when it comes to the developmental disability system,” says Dr. Bill Craig.

Dr. Craig is president of Lakemary, the nonprofit agency based in Paola, Kan., that provides services for Nicholas Little. Over 8500 Kansans receive similar services funded by Medicaid. Craig has heard from lots of parents and family members like Shelly Little.

“The fears that families have about KanCare is based on the general understanding that insurance companies need to make a profit. And they have come to Kansas for that purpose,” he says

Many also say that that the relationships recipients have with the state and service providers go back years or even decades. They worry about the three companies stepping into complicated care scenarios they aren’t familiar with. 

“To say that there’s a learning curve involved in a plan like KanCare is an understatement,” says Craig.

No Incentive For Cuts

From the very first discussion of KanCare, the state has insisted that services will not be reduced or cut. The cost savings are supposed to come from better coordinated care. The managed care companies have said the same thing.

In a statement for this story, Amerigroup President Laura Hopkins wrote, “There is absolutely no incentive for us to cut services, from a contract perspective or from a human perspective.”

The two other companies gave similar responses. But the families haven’t been convinced.

Two Years of Protests

For two years, they’ve bombarded state legislators with protests. In May of this year, more than 1,000 rallied at the Capitol

“This is something we’re never seen before, and that’s an uprising of families," says Craig. "Maybe not since the early days in the late ‘60s when families are trying to get special education created has there been that kind of involvement by parents.”

Legislators agreed to leave the long-term services for intellectual and developmentally disabled out of KanCare for the first year. But KanCare for medical services continued as planned, starting at the beginning of 2013.

Many doctors and patients have reported some major problems with KanCare, including payment delays, prior-authorization delays, and decreases in approval for services. Now KanCare opponents point to those problems as proof that the new system would be trouble for the intellectually and developmentally disabled.

State Responds

Shawn Sullivan is the director of the Kansas Department for Aging and Disability Services, which oversees the work of the managed care companies. He acknowledges that the first year of KanCare has had a rocky rollout, but the companies have made big improvements. While many providers still talk about the problems, Sullivan’s numbers tell a different story.

“When you compare the old Medicaid system’s billing to KanCare, when you look at denial rates and clean claims and aggregate payments out to providers, it’s actually very similar,” he says.

Lots of providers question those numbers, but Sullivan says too much of the KanCare discussion has been dominated by the providers and their concerns, rather than the needs of Medicaid recipients.  

“I feel like those that ultimately get services have kind of been caught in a tug of war between the state and between providers, and I think that’s extremely unfortunate,” says Sullivan.

According to Sullivan, those conversations have recently been moving in a different direction.

“I don’t think that we have done a good enough job of reaching out to family members and guardians and self-advocates,"he says. "We’re tried to correct that over the last few months, and we’ll continue to have that dialogue over the next six months to a year.”

Sullivan points to changes the state has made in response to the concerns. Medicaid recipients will be allowed to keep their case managers and current providers. And last week, the Department announced that it would monitor the payments made by managed care companies to watch out for reductions.

Not Enough

Those changes haven’t been enough for the National Council on Disability, which recommended a one-year delay for implementing the next phase of KanCare. Shelly Little says the changes aren’t enough to make the system work for people like her son.  

“You talk about falling between the cracks? They’re going to fall into a cavern here,” says Shelly.

To include the intellectually and developmentally disabled long-term services into KanCare, the state still needs the approval of the federal Centers For Medicare and Medicaid services. Pending that approval, the next phase of KanCare is scheduled to begin Jan. 1.

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