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Kansans with brain injuries finding it harder to get state help

State officials say new eligibility standards needed to ensure services only go to those who qualify

By Andy Marso | August 13, 2015

Kansans with brain injuries finding it harder to get state help
Photo by Submitted Janet Williams is the founder of Minds Matter in Overland Park, an organization that provides services to people who have suffered traumatic brain injuries.

An effort by state officials to keep Kansans with non-traumatic brain injuries from participating in a special Medicaid program is making it harder for those who qualify for the services to get them, advocates say.

At issue is a little-known Medicaid program that helps people suffering from brain injuries caused by external trauma, such as car accidents, falls or assaults. It’s a Traumatic Brain Injury (TBI) waiver program, meaning it’s primarily designed to provide services to people in their homes and communities rather than institutions.

Over the last five years the number of Kansans served by the TBI waiver has been as low as 643 and as high as 748. In addition to things like personal care and meal delivery for those who need it, the waiver also provides a host of rehabilitative services.

They include behavior therapy, occupational therapy, physical therapy, speech therapy, language therapy, and cognitive rehabilitation.

In 2014, the state received 183 referrals for TBI waiver services and approved 94, or 51 percent. In the first six months of this year, state officials have approved 55 of 130 referrals, an approval rate of only 42 percent.

Some advocates for disabled Kansans say tighter documentation standards are at least partly responsible for the drop in approvals.

“What we’re finding is that people are just getting the runaround,” said Janet Williams, founder of an Overland Park service provider called Minds Matter. “The (new) rules are not clear.”

Photo by Andy Marso Minds Matter, located in Overland Park.

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Angela de Rocha, a spokesperson for the Kansas Department for Aging and Disability Services, said the new standards are designed to ensure that only those eligible for TBI services receive them.

“The difference now is that agency procedures and processes have been strengthened to ensure that the documentation provided is accurate and appropriate,” de Rocha said.

De Rocha said her agency had discovered “several cases” of consumers who were inappropriately placed on the waiver program, including one who received services for years despite having a brain injury caused by encephalitis, not trauma.

De Rocha said KDADS is now requiring official documents that show that an applicant’s brain injury was caused by “an external force” and not by something “congenital or internal in nature, such as a stroke.”

“The agency does not believe that requiring documentation showing an individual actually has suffered a traumatic brain injury is an onerous requirement for a TBI waiver services program,” de Rocha said, noting that Kansans with conditions that don’t meet TBI requirements might be eligible for and better served by state waiver programs for persons with physical or developmental disabilities.

The state currently has a menu of different waiver programs for people with different types of disabilities, which sometimes offer overlapping services. KDADS officials are preparing to host public forums on streamlining the system into one “global waiver.”

Siblings struggle to help injured sister

Mary Pat Beals’ sister was in a serious car accident in 1980 that left her with a traumatic brain injury.

Months of coma and surgery to remove part of her brain left the injured sister unable to deal with the challenges of everyday life.

“She needs help with planning, executing, carrying things out, problem solving,” Beals said. “She’s very disabled by it. Physically she can walk and talk and things, but she just doesn’t remember and she’s not able to plan things out.”

Beals said her sister’s condition also makes her more vulnerable to people seeking to take advantage of her.

 “She gets preyed on by people who abuse her,” Mary Pat Beals said of her sister.

Beals said she and a brother recently had to help their sister end a manipulative relationship with a boyfriend. Now, she said, they’re having trouble getting their sister back on the TBI waiver. The state recently rejected her application, saying more documentation was needed.

“My brother and I have been working with her and trying to support her so she can get a job or do things that will give her access to a better quality of life,” Beals said. “But we could use some help and I think that’s what the waiver’s for.”

Qualification for the TBI waiver is a multi-step process.

Applicants must first visit their local Aging and Disability Resource Center for a functional assessment to determine what disabilities they have. They must then provide documentation to KDADS that those disabilities were the result of a traumatic brain injury. Finally, their application is forwarded to the Department for Children and Families to determine financial eligibility.

Qualifying applications are sent on to the three managed care organizations that took over Kansas Medicaid when it was rebranded KanCare in 2013. Consumers may either select one of the MCOs or be assigned to one and the companies' case managers help them connect with service providers.

The TBI waiver services are available to Kansans age 16 to 65 who meet the financial guidelines for Medicaid and have a traumatic brain injury that would qualify them for placement in a rehab hospital if they don’t get on the waiver.

Applicants must “clearly” document that they have a traumatic brain injury by providing medical records or police reports, according to the KDADS website.

The agency doesn’t accept “handwritten anecdotal references to an injury by non-medical third parties," de Rocha said.

“Often such reports refer to incidents decades in the past for which no medical or law enforcement documentation of an injury is provided,” she said. 

Manual not updated

But Williams said the policy manual KDADS gives to providers like her has not changed to reflect the agency's new stricter standards. The manual still says applicants for the TBI waiver should seek "medical records, Social Security information or, as a last recourse, establish confirmation from a reliable source such as a spouse or parent.”

"The last sentence was always included because it is often difficult to get medical records," Williams said. "More important, the functional assessment shows the myriad of physical, cognitive and behavioral challenges. The score from that instrument, which was valid and reliable in evaluating for a TBI, and a reliable report that someone had a TBI was always considered enough."

Photo by Submitted Williams, right, has traveled to the Legislature with client Teressa Harvey so Harvey could tell lawmakers the difference TBI waiver services have made in her life.

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Williams said she's concerned about the number of steps added to eligibility, the lack of clarity about exactly what those steps entail, the lack of assistance for people to navigate the process and KDADS changing the rules without posting them or notifying stakeholders.

Guidance on the KDADS website also emphasizes that the TBI waiver is not intended to provide permanent, ongoing services. Rather, it says that the waiver is designed to be a “short-term rehabilitative program.” They agency says TBI services can be available for up to four years as long as participants “continue to make progress in their rehabilitation and transitional living skills.”

“Please keep in mind that the TBI program is not considered a long-term, maintenance program,” de Rocha said. “It is designed to be a rehabilitative program that will provide therapeutic services to enable a consumer to regain or relearn functional skills lost as a result of the TBI. The capacity to demonstrate rehabilitative potential has always been one of the eligibility requirement criteria used for admission to the waiver program.”

Advocates say the symptoms of brain injuries are amorphous, and it’s not always easy to judge rehabilitative potential until services are provided.

"It has been proven that people can make progress many years after a brain injury," Williams said. "We can all learn. Requiring a physician who does not necessarily know rehab or the person very well, to write such a letter is an undue burden."

Susan Connors, president and CEO of the Brain Injury Association of America, in a March 6, 2014 letter to then-KDADS secretary Shawn Sullivan, said brain injuries can be complex, difficult to identify and cause chronic problems that come and go. For those reasons, she urged

Sullivan not to increase the waiver’s documentation requirements and place time limits on services.

“More stringent eligibility requirements and arbitrary time limits on access to waiver services would seem to undermine the very purpose of the program — namely avoiding inappropriate placement in institutional settings and utilization of other costly social service programs,” Connors said.

Tougher to qualify

Williams said since the application process was tightened, the Kansans she works with are asked for more documentation — and more detailed documentation — than ever before.

“Say we send a record in that says ‘subdural hematoma,’” Williams said. “If it doesn’t say ‘Traumatic Brain Injury,’ the person gets rejected.”

Williams said a newspaper clipping showing the applicant was involved in a serious car accident used to be enough documentation. But now the state wants detailed medical records.

Photo by Andy Marso Clients who suffer from traumatic brain injuries painted this relief mural that hangs in the lobby of the Minds Matter office.

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Angela Pelger, a Johnson County government worker who helps residents there navigate the waiver system, said she too is hearing from more people who are having trouble figuring out what documentation they need and how to get it.

People may have suffered several brain injuries — some that would qualify for the waiver and some that would not. That makes it tough to clearly document which symptoms were caused by which injuries, Pelger said.

“I can think of one case in particular where the individual had gone into rehab as a result of a stroke, but then during rehab had fallen and hit his head on the end of the dresser in his room,” Pelger said.

Pelger said it’s easier to satisfy the state’s requirement if the applicants have recent injuries. If she can begin the process while the applicant is still in the hospital recovering from the trauma in question, it’s relatively simple to get the necessary documents.

But because brain injuries can result from the cumulative trauma of several events the full extent of a person’s injuries are sometimes not correctly diagnosed for years.

In those cases, documentation can be particularly difficult.

“If it’s a year or more after they’ve been discharged, it can be tough,” Pelger said.

As a result, Pelger said, she believes there are a significant number of Kansans who could benefit from the TBI waiver who having difficulty clearing the eligibility hurdles.

“I think there’s a lot of people who languish out in the community without any help,” Pelger said. “I think there’s numbers of people out there floundering and not able to meet their daily needs because they have these brain injuries.”

Brain injury patients treated at large hospitals with specialized staff appear to have an advantage when it comes to getting their waiver application approved.

The University of Kansas Hospital, in addition to having a center dedicated to concussion management employs a social worker – Cheryl Bruner – in its trauma program to help patients transition to the TBI waiver.

Bruner said the new documentation standards haven’t created significant new barriers for her.

“We’ve been able to utilize just a regular progress note from one of the residents or one of the surgeons or attendings who are covering the patient’s care,” Bruner said. “In that documentation, if that patient is documented as having a traumatic brain injury or subdural hematoma, then that’s commonly worked for us. We’ve had very little barriers.”