Laura Robeson quit her job as a fourth-grade teacher to care for her son, who has cerebral palsy and other health problems. But as politicians considered cuts to various health care programs, she felt compelled to become an activist, working with others to speak out for families like hers.
That culminated at the State of the Union Address in February. Kansas Congresswoman Sharice Davids chose Robeson to attend as her guest, providing a real-world example of the role federal healthcare policies play in a citizen's life.
“This is her real life, and the fact that she's constantly out there making herself both available and vulnerable to people around something that is so personal, I just think it's remarkable,” says Davids.
Two months premature
Robeson was a teacher at Raymond B. Marsh Elementary School in the Shawnee Mission School District, when she delivered her only child, Danny, two months prematurely.
Though Danny spent the first six weeks of his life in the neonatal intensive care unit, doctors assured Robeson and her husband that he would eventually achieve typical development. But at four months old, Danny wasn’t locking eyes with his parents.
"We had an appointment scheduled with an ophthalmologist to have his eyes looked at. And from there, we had an MRI scan, and down the road we went," Robeson says.
And by that, she means the diagnoses of cerebral palsy, cortical vision impairment and epilepsy. Danny uses a wheelchair, needs a feeding tube and is non-verbal.
Due to his intense care schedule and frequency of unexpected hospitalizations, Robeson quit teaching. And while her being unemployed didn't destabilize her family, she says it bothered her tremendously that for others in a similar situation, the decision would be disastrous.
"Employment instability and the high cost of raising a child with a disability have significant consequences on income, productivity and healthcare coverage," Robeson wrote in 2017 as testimony in support of House Bill 2064, which would have established the KanCare bridge to a Healthy Kansas Program, expanding Medicaid eligibility in the state.
The bill ultimately died in the May 2018 session.
In Kansas, the poverty rate is around 13 percent higher for families with disabled five to 17-year-olds than those without. While children with disabilities are currently covered by Medicaid, in many cases, their caregivers are not.
"There are a lot of people in Kansas who are in a caregiving role or have to stay home to be a fulltime parent to a child with a disability. (Medicaid) is only available to people making up to 38 percent of the federal poverty limit. If they earn over $6000, they themselves can’t have access to healthcare and they are suffering," Robeson explains.
Danny, now seven, is qualified under the Home and Community Based Services waiver to receive coverage through KanCare, the state Medicaid program in Kansas. For now, the family has elected to use their own private insurance, though Danny has used government-funded services in the past, such as Infant Toddler Services of Johnson County. That program is partially funded by both the state and federal governments.
‘A shot across the bow’
Robeson's entrance into a more active political life began in 2014 when then-Gov. Sam Brownback enacted a new tax that would divert money from healthcare and threatened to completely stop funding for Infant Toddler Services.
"So," Robeson says, "that was a shot across the bow to me, that if not me, then who, if not now, when? And I started getting a little bit more involved."
As she became involved, she says, her scope widened beyond her own family – most recently with Medicaid expansion.
Robeson volunteered with the advocacy group Kansas Appleseed to knock on doors in Sens. Jim Denning and Susan Wagle’s districts. She and other volunteers knocked on about 2,500 doors in late April after the two Republican leaders kept the Kansas Senate from voting on Gov. Laura Kelly’s Medicaid expansion bill.
The expansion measure would have changed the numbers so that Kansans making less than 138 percent of the federal poverty line, about $35,000 a year for a family of four, would be eligible for coverage. If the measure passed, it would cost $50 million a year in money from Kansas taxpayers and more than $900 million from federal taxpayers. Thirty-seven states have already passed the expansion.
Denning explained in May that he passed on moving the bill forward because he thought it wasn’t ready yet. For her part, Robeson says she’ll continue to tell her story until Medicaid expansion is ready for a vote.
Since registering her family’s story with a national advocacy group called Little Lobbyists in 2017, Robeson has told it to elected officials, media outlets, advocacy groups and voters when she and her son go door to door.
Robeson says she struggles with finding the balance between protecting her son's privacy and telling enough of the story that others will understand the urgency of expanding health care.
But, at the same time, she says, "I recognize the importance and the power of that story, and that if I don’t do it, I don't know that anybody else will. And the stakes are too high to not do anything at all."
Follow KCUR contributor Anne Kniggendorf on Twitter @annekniggendorf.
