Nine years ago, Ashley Boyer was a recent Liberty High School graduate who woke up in an intensive care unit paralyzed from the waist up and unable to speak after suffering a hemorrhagic stroke.
She’s built herself back up, slowly, with speech therapy, physical therapy and occupational therapy, all while receiving in-home disability support services, paid for by Medicaid, from a Kansas City-based organization called The Whole Person.
“Without (disability support) services, I would be lost,” Boyer said. “I’d still be using a walker, not knowing what to do, or worse, I’d be sitting in a corner somewhere.”
Boyer and other Kansas City-area residents with disabilities fear access to those services could change as Republicans in Congress seek to rein in Medicaid spending as part of their effort to repeal and replace the Affordable Care Act, commonly called Obamacare.
The Republican health care bill that passed the U.S. House of Representatives in early May goes further than just rolling back the Affordable Care Act’s Medicaid expansion. It would fundamentally change the Medicaid program that existed before Obamacare.
Medicaid is an open-ended reimbursement system that’s jointly funded by the federal government and the states, based on each state’s per capita income. In Kansas, the feds pay for about 55 percent of the costs. In Missouri, it’s just over 60 percent.
There are no limits on how much the feds kick in. The more eligible claims a Medicaid patient creates, the more they pay.
The Republican health care bill would change that. It would give states the option to either take capped per-person payments based on Medicaid enrollment or block grants based on previous spending levels, with more exemptions from federal regulations. Either way, the amount of federal Medicaid dollars flowing to the states would be limited, resulting in cuts of more than $800 billion over the next 10 years, according to the Congressional Budget Office.
People with disabilities, their families and their service providers say cuts would fall most harshly on them, because the disabled are the most expensive population within Medicaid, and Medicaid is basically the only payer for in-home disability support services that help with nonmedical things like cooking, dressing and bathing — services like the ones Boyer received as she rehabbed after her stroke.
“It’s a big concern for us, that the general public doesn’t know what all Medicaid pays for,” said Chad VonAhnen, executive director of Johnson County Developmental Supports, an organization that provides services to people with intellectual and developmental disabilities.
VonAhnen said that most of the public attention on the health bill so far has been directed to high-risk pools and coverage for pre-existing conditions, not the Medicaid changes.
Like much in the bill, the Medicaid provisions are complicated. But Janet Williams, president of Minds Matter, an Overland Park company that coordinates services for people with traumatic brain injuries, said their results would be simple.
“We’re going to see even more people with brain injuries in nursing homes,” Williams said.
Providers push back
Disability organizations are girding to fight as the bill moves to the U.S. Senate, where Republicans have said they will start over on health reform but have also said they’re discussing their own Medicaid limits.
Kansas Sen. Pat Roberts said in an emailed statement that the program’s growth in enrollment and spending under the Affordable Care Act have forced Congress to rein it in to keep it viable “for those most in need.”
“As we continue to have conversations on how best to reform our health care system, being cognizant of budgetary and procedural restraints, we will remain focused on how to best meet the needs of both current and future Medicaid beneficiaries,” Roberts said.
Sarah Feldman, a spokeswoman for Missouri Democratic Sen. Claire McCaskill, said her boss is willing to work with Republicans on Affordable Care Act changes, but the bill the House passed “would be a disaster for Missouri families.”
“The House Republican health care bill would severely cut Medicaid programs and disproportionately punish seniors and Missourians with disabilities,” Feldman said.
Disability service providers have ramped up their lobbying efforts since the House bill passed.
The president of Mosaic, an Omaha, Neb.-based provider for people with intellectual disabilities that operates throughout the Midwest, called on members to urge senators to reject any Medicaid restructuring that’s based on cost-cutting.
VonAhnen said his organization is part of a group arranging visits to senators’ local offices this month and flying some people to Washington, D.C., to lobby against the bill in June.
VonAhnen said Johnson County service providers can’t absorb federal cuts after spending almost a decade fruitlessly lobbying in Topeka for higher reimbursement rates for their services. Providers say the rates are already too low to keep quality workers, and one provider in Olathe closed after state budget cuts last year, leaving 19 people with developmental and intellectual disabilities looking for new services.
Missouri Gov. Eric Greitens proposed larger cuts to that state’s Medicaid budget for disability services this year, but he later decided to walk them back.
VonAhnen said more closures are “still a concern,” and the combination of Kansas’ years of tight budgets and the federal Medicaid caps “could potentially paint a pretty grim picture” for disability services networks already struggling to meet demand.
“If there aren’t providers to provide services, I’d hate to speculate on what would happen to people,” VonAhnen said.
More pressure on families
Gayle Richardson thinks she knows what would happen: Families like hers would be forced to try to pick up more of the slack.
Richardson, from Overland Park, is 73. Her son Rusty is 44 and was born with physical and developmental disabilities caused by several conditions, including autism and cerebral palsy.
He lives in a home with three other disabled adults that is staffed by a disability service provider called the Lakemary Center, and he goes to a day services program at Johnson County Developmental Supports. Both are funded through Medicaid.
Gayle Richardson is part of a group of about 15 Johnson County Developmental Supports families who banded together last year to raise concerns about the system after the Kansas budget cuts. They’re now turning their attention to the federal proposal to cap Medicaid.
“It’s a big deal,” Richardson said. “...Some of our providers are really working on the edge. They just don’t have the money to handle all the needs these people have.”
Richardson said cuts in support services would put more pressure on families like hers. Rusty Richardson stays with her and her husband most weekends, but they’re past the age when they can physically care for him full-time. And she doesn’t consider institutional living an option.
“I believe in having our folk out in the community,” Gayle Richardson said. “I believe what makes people uncomfortable with people who are different is not rubbing shoulders with them.”
Boyer, who interned at Minds Matter while working on her master’s, said she thinks often about where she might have ended up without the services she received. Institutionalization was a real possibility, given that she couldn’t even sit up in bed at first.
“I’ve seen this first hand through my internship,” Boyer said. “I’ve seen people left behind who aren’t able to have their rehab. They’re stuck.”
By contrast, her progress has been remarkable. Boyer still walks with a cane and her voice shakes, but she speaks clearly, she works at a gym, she lifts weights and she just completed her master’s degree in social work from Park University.
She plans to use that degree to help others navigate the Medicaid system, which she hopes will stay intact.
“What’s all been given to me, I can give back and I want to be able to have a future, be able to help people,” Boyer said. “In social work, everything I do is going to rely on Medicaid and insurance and availability. So I need that here for others.”