When a 2003 ultrasound revealed that Kari Almeida’s baby would be born with a cleft lip and palate, the Spokane mother was devastated.
She worried that she’d done something wrong, that she wouldn’t know how to find care for her son, that he’d never fit in with other kids.
“My biggest fear was to be embarrassed of my own child,” Almeida, now 38, recalled on a Web site.
But by the time Kolin arrived on June 17 of that year, Almeida had calmed her worst concerns, thanks to Spokane’s Maxillofacial Team program and Laurie Vessey, the public health nurse who has coordinated it since 1992.
“I felt that I had met someone who would save me from the despair I felt,” said Almeida, who received weekly visits from Vessey the first month of Kolin’s life.
So the Spokane elementary school teacher is outraged by news that state Department of Health officials plan to eliminate funding for three maxillofacial teams by January. And she’s backed by parents of some 300 Eastern Washington children served by the program each year.
“My biggest thing is just to be heard and to make a fuss,” said Almeida, director of Spokane Smiles, a network for families of children born with clefts. Affected kids often require surgery, special dental care and speech therapy, all carefully coordinated over several years.
“If our state is going to cut the care for the kids who have the number one birth defect in the country, then shame on us,” Almeida added. “Shame on us.”
State health officials concede that they are cutting nearly $155,000 in funding for the 45-year-old program that pays for teams in Spokane, Yakima and Tacoma to provide care and services.
But they said they have few options following successive cuts in the federal Title V Maternal and Child Health Block Grant, which has slashed $460,000 from Washington’s allocation in the past two years. The state will receive about $9.1 million through the program this year, a 5 percent reduction from previous years in a program that pays for the bulk of county-level aid for mothers and children.
“We think these are important services, but we can’t continue putting in our piece of the funding,” said Maria Nardella, coordinator of the state’s Children with Special Health Care Needs program. She stressed that medical care will continue, but support services will end.
Other planned cuts affect programs that help children with genetic disorders, including Phenylketonuria, or PKU, as well as support services for at-risk new mothers and for parents of troubled adolescents, Nardella said.
In deciding what to cut, officials looked to programs that provided limited direct services to relatively few children instead of systemwide support for more disabled kids.
“One of the reasons (the maxillofacial) program was targeted is it’s a remnant of older funding when we did direct services and targeted services,” Nardella said. The focus now, she added, is on infrastructure.
But Vessey, who visits children with clefts and their families, said that the maxillofacial program more than meets that definition. Her advice helps parents learn to feed the children, who often require special bottles and techniques, and to navigate the wide range of doctors and specialties the condition requires.
“Without these teams, there is no infrastructure for these kids,” said Vessey. “This is the standard of care for this population.”
Nardella said there’s not much hope of reversing the cuts. In Spokane, the state allocation provides about $50,000 of a nearly $150,000 annual budget, with about $35,000 coming from the Spokane Regional Health District’s general fund and about $61,000 in federal Medicaid matching money.
To keep the program afloat, organizers need at least $50,000 and as much as $85,000 to cover the state and county portion of the funding, said Lisa Ross, the health district’s nursing supervisor for children with special health care needs.
“I think there is a potential that the $50,000 is available in the community,” Ross said.
It’s possible Sacred Heart Children’s Hospital could help, following the lead of the Children’s Hospital and Regional Medical Center in Seattle, which adopted the maxillofacial program in King County a few years ago. But Peggy Mangiaracina, the hospital’s vice president and executive director, said discussions about new funding sources are continuing.
“We’re not going into this saying we’re going to fund this,” she said Tuesday.
Organizers don’t have much time to settle on new funding sources, noted Almeida. Advocates only learned of the program cuts in June, which precluded the possibility of applying for most grants this year.
She’s afraid the program will be shuttered before a solution is found, leaving parents of kids with clefts to negotiate on their own.
“Had I not had the cleft team review board, I don’t know what I would have done, and I’m a pretty big advocate for my child,” said Almeida, whose son is now a curly-haired 4-year-old with a steady smile.
“I’m just thinking about all the families that don’t have the skills to do that.”