CEDAR RAPIDS — Most of Lucas Montgomery’s days at school are consumed by his health needs — including hourly vital checks, tube feedings and regular readjustments in his wheelchair.
Because of a genetic disorder, the 20-year-old Prairie High School student needs constant care. At school, nearly all of it is handled by Licensed Practical Nurse Leah Kimball.
“When he’s at school, she’s at school,” Lucas’s special education teacher Devon Ashby said. “There’s so much that he needs, I don’t think he could be here” without her.
Kimball’s pay, as well as the cost of the equipment she uses to take care of Lucas, is eligible to be reimbursed by Medicaid — the health insurance program for Iowa’s nearly 600,000 poor, elderly and disabled.
Those funds could be in jeopardy under the Republican health care plan passed by the House last month and currently being reworked in the Senate, according to special education advocates.
Under the proposed American Health Care Act — a replacement for the Affordable Care Act enacted under President Barack Obama — the Medicaid program would be converted from a joint state-federal program to a per capita cap — in which the federal government would pay a certain dollar figure for each Medicaid member and states would be responsible for additional costs. That cap on reimbursements could affect those that funnel into schools — about $4 billion last year, according to an April report from the Center of Budget and Policy Priorities, a nonpartisan Washington, D.C., group.
That money can be critical for school budgets. The College Community School District, which Lucas attends, received more than $551,000 in Medicaid funds for services provided during the 2015-2016 school year, according to data provided by the district.
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Were Iowa school districts to lose any funding they use to provide special education services outlined in Individual Education Plans, or IEPs, they still would be required to provide the same level of care, a spokesman for the Iowa Department of Education said.
A ‘threat’ to children with disabilities
Advocates for special education services nationally have said capping funds would leave schools fighting with hospitals and other health care providers for fewer Medicaid dollars, and the plan has been derided in Iowa, as well. At a town hall event in Cedar Rapids in May, Dale Todd, with his son Adam, confronted U.S. Rep. Rod Blum about his support for the AHCA.
“Under the American Health Care bill, Adam here will not be negatively impacted by this bill,” Blum told Todd, whose son has epilepsy, according to recordings of the event. “... In my book, we should never ever cut a dollar to somebody like Adam, ever.”
Still, dozens of education- and health-focused groups signed a School Superintendents Association March 21 letter to legislators that said a cap structure “threatens to significantly reduce access to comprehensive health and mental and behavioral health care for children with disabilities and those living in poverty.”
Districts would be ‘responsible for the costs’
School districts currently can bill Medicaid for their health and behavioral services. The reimbursement is a mix of state and federal dollars administered through the state.
In Iowa last school year, Medicaid funding for schools totaled more than $102 million, according to a Center of Budget and Policy Priorities report. About $56.7 million of Iowa schools’ reimbursement came from federal funding.
This school year, the Iowa Department of Education said schools had submitted $37.5 million in claims as of May 30 — a two percent increase compared with the same period last year.
College Community School District’s reimbursement of $551,173 helped cover services for 47 students, including Lucas. Of that money, more than $471,000 offset some of the costs of paraprofessionals, nurses and certified staff costs, according to the district.
Nearly $48,500 was used to pay for professional nursing services for specific students and nearly $30,900 was used to cover district nursing staff’s time to process and submit Medicaid paperwork.
Kimball, Lucas’s nurse, is paid by a nursing agency and not the school district, but her salary is reimbursed entirely by Medicaid, Lucas’s mother Stacey Montgomery said.
Medicaid did not cover another $133,630 of costs associated with special education, district spokesman Steve Doser said. The school district paid the remainder using its General Fund, a pool of money allocated by the state.
Were Medicaid reimbursements to decrease, school districts in Iowa would still be required by the Iowa Department of Education to provide the same level of services to students with special needs.
“These are IEP (Individual Education Plan) services that must be delivered to kids,” Doser said in an email. “Which means the district would be responsible for the costs.”
‘I can’t do what she does’
At Prairie High School, Leah Kimball is almost always by Lucas’s side — she worries, teacher Ashby said, when she leaves him for minutes so she can go to the bathroom.
On one of the last days of school this year, after giving Lucas a tube feeding and before wheeling him across campus to where she would eat lunch, Kimball rolled up a hand towel and tucked it between Lucas’s ear and the side of his wheelchair’s headrest, for comfort.
Lucas’s syndrome, which Stacey, his mother, described as Alzheimer’s for children, keeps him from breaking down complex sugar molecules.
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Those enzymes slowly have built up in his brain, she said. When Lucas was a toddler, he inexplicably started to forget how to walk, and then to talk. She and her husband, former University of Iowa running back Lew Montgomery, didn’t officially receive a diagnosis — Sanfilippo Syndrome — until Lucas was 8.
Then, doctors said he’d likely live until his 10th birthday. Now 20, he graduated high school last weekend — though he’ll return to school next year, Montgomery said, because he’s eligible to stay until 21.
Although he can’t speak, Lucas understands everything that happens around him, she said.
“We can only give him so many experiences at home,” she explained. “He enjoys being around other students and peers of his age. It still brings him a lot of joy.”
One of the few ways Lucas still can communicate is through smiling. Kimball, who has worked with him for almost five years, said she gets those often.
“I’m sticking with you, aren’t I?” she said to Lucas during the feeding session. “Most of the time you smile when I walk in.”
To Ashby, the special education teacher, the nurses and paraprofessionals who work with her students are invaluable. Without staff such as Kimball, she said, students with disabilities could lose access to school.
“Lucas couldn’t come,” she said. “I can’t do what she does.”
The Washington Post and Gazette reporter Chelsea Keenan contributed to this story.
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