Margaret Tomlinson has been recovering from a traumatic brain injury for three years. Nearly a year ago, she moved from her sister’s home in Atchison, Kansas, to live on her own in Wathena.
The phased-out Money Follows the Person program could’ve made that transition easier by paying for home modifications or part of rent and utilities.
“It is incredibly difficult to get things through insurance sometimes," Tomlinson said. "Extra money that follows you that you can use for things is incredibly helpful."
For about a dozen years beginning in the early 2000s, Kansas was a model for other states in using the federal Money Follows the Person program to give people with a range of disabilities better chances to live independently.
From 2007 to 2017, Kansas used federal grants from the program to help 1,728 disabled people live more independently.
The program paid for things like building a ramp to a home, home medical equipment or help with rent and utilities.
The number of people using the program dropped dramatically after Kansas wound down its use of the grants in 2017. The state of Kansas reported no MFP transitions — when someone uses the money from the program to move out of a nursing home or other institutional care — between 2018 and 2020.
Kansas decided to embed similar assistance into KanCare, the state Medicaid program, instead and formally left the MFP program in August 2020.
This spring, the Kansas Department for Aging and Disabilities Services appeared poised to revive the Money Follows the Person program.
But at a legislative committee hearing in early May, KDADS officials told lawmakers the agency was shelving the program after learning that Kansas was unable to meet the requirements set by the federal centers for Medicare and Medicaid Services.
The news came after KDADS had been working with social service agencies to revive the MFP program. That included gathering about 200 people on a conference call in April.
Now, those same healthcare and social service organizations say it will be harder to get people out of nursing homes and back to living independently. They’re worried those people will become more dependent on institutions.
“That can lead to more cognitive decline,” said Kevin Daffron, a therapist at the Minds Matter independent living service. “If you’re not getting the services you need, that can lead to people being put in nursing homes.”
Janet Williams is the founder and CEO of Minds Matter. Her agency had 24 people on a list to receive money through the MFP program once it was reinstated.
Mike Oxford advocated for Kansas to participate in the Money Follows the Person and saw how the state, along with Texas, was cited as a national model.
“This is about the individual liberties of people with disabilities,” Oxford said. “This is really about people’s civil rights.”
Angie Reinking worked for the MFP program in Kansas for five years. She’s now active in The Arc of Douglas County that promotes the rights of people with intellectual disabilities.
“Most people, if they’ve been in an institution for a while, have often had to get rid of all their possessions or have no furniture,” she said. “Moving into the community, you obviously need all those things. And, typically, there's no funding for that. But the MFP grant had specialized funding for those things.”
A spokesperson at the Kansas Department for Aging and Disability Services says the agency still wants to help people find care outside of institutions through Medicaid coverage.
Since the MFP program started winding down in 2017, more than 2,700 Kansans have transitioned out of nursing facilities through those Medicaid programs.
Rachel Schnelle reports on Missouri and Kansas issues for KRPS.
The Kansas News Service is a collaboration of KCUR, Kansas Public Radio, KMUW and High Plains Public Radio.
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