Eating problems beyond picky eating are “exceedingly common” among children. Children with autism spectrum disorder are even more impacted, with around 70% of children with autism having some level of food selectivity.
Yet many children with autism fail to receive timely care for feeding problems because of hurdles with health insurance or prohibitive distance from feeding therapy providers.
“For individuals with autism, part of the syndrome is that they can be restricted in their interests and get into behavioral grooves,” Dr. Amy Drayton, director of the pediatric feeding program at the Munroe-Meyer Institute at the University of Nebraska Medical Center, told Autism Business News. “Kids tend to be picky to begin with, so you add that on top, and they can really become focused on certain foods and act like other foods are not even foods.”
The Munroe-Meyer Institute’s feeding program offers outpatient and intensive outpatient programs. Care teams consisting of BCBAs, licensed psychologists, dietitians, speech-language pathologists, pediatric gastroenterologists and occupational therapists provide the therapy.
The provider also offers a program within the pediatric feeding department, called the SEEDS (Starting Early Eating and Developmental Skills) program, which caters specifically to children with autism.
Autism therapy providers who do offer feeding programs and overcome reimbursement and staffing barriers experience high case success rates, staff retention and can increase patient pipeline by offering comprehensive care.
Feeding disorders
Feeding issues often manifest as food selectivity or eliminating at least one food group.
“It is important to understand food selectivity in autism is not just picky eating,” Dr. William Sharp, program director of the multidisciplinary feeding program at Marcus Autism Center, told ABN in an email.
The multidisciplinary feeding program at Marcus Autism Center offers a treatment program for children aged 8 months to 21 years old with chronic feeding disorders, as well as an ABA therapy program and complex behavior support program.
The Atlanta, Georgia-based nonprofit serves approximately 300 children in its feeding intensive day program and a “much larger pool of patients” in its outpatient clinic.
“It is a serious concern that may impact the health of the child and overall functioning of the family,” Sharp, who is also a professor in the department of pediatrics at the Emory School of Medicine, continued.
Children will often eat only one food or one category of food, according to Ben Sarcia, clinical director of the Healthy Beginnings feeding therapy program at Verbal Beginnings.
For example, children may only be willing to eat fruit.
“You wouldn’t think that’d be a bad thing,” Sarcia said. “But when it’s only fruit, that’s obviously really limiting and results in nutritional deficiencies in other areas. Protein deficiency can result in growth problems, problems maintaining weight or problems with constipation.”
Verbal Beginnings is an autism therapy provider headquartered in Columbia, Maryland with five Maryland locations and 550 employees, according to its site. It’s also the only ABA provider in Maryland with an official feeding program, according to Sarcia. The feeding program also accepts children with feeding disorders who may not have an autism diagnosis.
Feeding disorders impact families of affected children as well as the child themselves, Dr. Laura Phipps, a board-certified behavior analyst (BCBA) at the Munroe-Meyer Institute’s SEEDS program, told ABN.
“It can be really isolating and overwhelming for families and require a lot of planning and financial resources to navigate,” Phipps said. “Eating is something we do every day multiple times a day and for children with feeding difficulties, these challenges can take over their life and their caregiver’s lives in ways that severely limit their access to positive life experiences.”
A dearth of feeding programs
Drayton estimates that zero to one feeding program exists in each U.S. state, referencing research that shows that the need for feeding programs far outweighs capacity.
Patients travel to the Munroe-Meyer Institute in Nebraska from other states “all the time,” Drayton said.
Most feeding programs experience waitlists of 12 months or more.
Intensive Multidisciplinary Feeding Day Programs in the United States: A Report Regarding the Treatment Landscape Intensive Multidisciplinary Feeding Day Programs in the United States: A Report Regarding the Treatment LandscapeThe same study also found that new programs are not launched frequently enough. Only four programs opened within the last five years.
Researchers also identified a “concerning trend” of feeding program closures, driven by reimbursement barriers and staffing woes.
Offering a feeding program when so few other ABA providers put Verbal Beginnings in a “unique position,” Sarcia said. Families who would otherwise go to a different ABA provider are excited that they can get all of their needed services under one roof.
Getting feeding services from the same provider as regular ABA services can also make dealing with insurance companies easier for families.
“If you do have another ABA provider, most insurance companies will not allow you to double up,” Sarcia said. “Even if you’re getting early intervention or social skills from one and feeding from the other, they don’t typically recognize that you’re getting different services.”
Offering outpatient services also frees up hospital beds for more intensive programs which work with more medically complex children, Sarcia said.
Lack of trained staff
Along with a severe shortage of feeding disorder programs, education and training around feeding disorders is severely lacking. Trained registered behavior technicians [RBTs] and BCBAs can be extremely difficult to find.
Some autism clinicians who have not received specialty training may try to provide feeding therapy, which Sarcia does not advise.
“There are some BCBAs out there who do not realize they’re not qualified. They haven’t had the proper supervision,” Sarcia said. “You need to be supervised by someone who has experience before you go and do this on your own.”
The pediatric feeding program at Munroe-Meyer Institute offers an intensive two-month training program to mitigate problems associated with finding trained staff.
About half of the program’s new hires already have their credentials and the other half require training, Drayton said.
The Marcus Autism Center is also seeking to increase access to care through training by piloting a training program for BCBAs, which is planned to launch this summer.
The provider has also developed a manual-based intervention called the Managing Eating Aversions and Limited Variety (MEAL) Plan-Revised.
“MEAL PlanR is a behaviorally based, health promotion program to improve a child’s dietary intake and overall participation in mealtimes,” Sharp said. “In our work, we have shown that MEAL PlanR establishes appropriate mealtime behaviors, successfully expands dietary variety, and empowers caregivers to make meaningful and lasting changes in their child’s relationship with food.”
Negotiating with payers
Without intervention, feeding programs can have severe consequences.
Delaying treatment can cause nutritional deficiencies that lead to hospitalization for scurvy or rickets, permanent hearing issues and the need for gastrointestinal tubes, Drayton said.
Failure to receive any treatment can have other, life-altering impacts.
“I have met adults who are eating purees, and if there’s not a complex medical issue, that makes me sad,” Sarcia said. “There was a report in a U.K. journal about a child that was eating three foods and as he progressed through puberty, he was going blind because he was so malnourished due to his diet.”
Verbal Beginnings bills its feeding programs through ABA services. The provider presents payers with data demonstrating the need for feeding therapy the same way it would for toilet training or communication skills, Sarcia said.
Sarcia usually presents payers with a peer review, whether with a BCBA or a psychologist. These peer reviews can also have their challenges.
“I had a peer review recently where I was speaking to BCBA but the person was not familiar with the behavioral treatment of eating at all,” Sarcia said. “It was apparent she didn’t recognize it and she did not approve what I requested. “That’s a frustration on my end because I feel like if you’re conducting the review, you should be familiar with the treatment that’s being requested.”
The Munroe-Meyer Institute’s feeding program bills its intensive program as ABA, but mostly bills services delivered through its outpatient program as mental health or health and behavior codes.
Both of these codes are billed by master’s-level psychologists. Because of the Mental Health Parity and Addiction Equity Act, billing as mental health or health and behavior codes can be easier than billing as ABA, Drayton said.
“There are more hoops to jump through [when billing as ABA],” Drayton said. “Insurance will come back with fewer units than you asked for and might ask, ‘Why is an ABA provider doing the feeding treatment?’ … It tends to be more back and forth to get that coverage. Or they might cut off a kid because they said they’ve been in ABA long enough.”
The Munroe-Meyer Institute bills its intensive program as a day rate and its outpatient as fee-for-service.
The ease of billing the per diem day rate is variable, Drayton said.
“Some insurance is pretty easy,” Drayton said. “Some, like United, don’t cover it at all. … Medicaid in most states will cover it, but the rate that they pay would make every program go under, at least in Nebraska. … And then you have to get them to actually pay it. “Even if you have a single case agreement that they’ve signed, it’s difficult.”
Despite the hurdles associated with feeding therapy, success rates are high.
Patients at the Marcus Autism Center reach an average of 85% or higher of their goals set by parents and the treatment team. When admitted to the program, patients eat an average of only three foods. By discharge, they leave eating at least 19 foods, including four fruits, four vegetables, four starches and four proteins.
Clear improvements among patients is one reason why the Munroe-Meyer Institute’s feeding program has a high employee retention rate, Drayton said.
“Because we’re working on feeding, pretty much every kid reaches their goals and graduates,” Drayton said. “To me, that’s really motivating. It’s really reinforcing. Whereas in other ABA centers, you have so many goals, so many targets, that it often is not that really satisfying end point.”
Autism providers who do not offer feeding programs can help parents who are struggling to navigate their child’s feeding disorder, Phipps said.
“I hope that providers who have strong personal opinions on what is or is not appropriate treatment will become more cognizant of their potential shaming of parents for seeking intensive treatment for their child,” Phipps said. “It is already hard enough for families to have to go through the trials and tribulations associated with not being able to adequately feed their child. I think we need to trust that caregivers have the best intentions for their children and the easier we can make this difficult process for them and for the child, the better.”
