Carol Embry and her husband have full-time jobs with health insurance, but neither their salaries nor their policies cover the cost of the autism treatment their 5-year-old son needs.
They've tried other therapies. They've borrowed money and tapped into retirement funds.
"All of my son's medical professionals say this is his prescription for his health and I cannot provide that for my son no matter what I do," she said this week in frustration.
So along with hundreds of other Utahns, the Woods Cross couple threw their child's name into a lottery for free applied behavior analysis (ABA) therapy, paid for by a pilot program under Medicaid.
Advocates are hoping the pilot one of three will show good results and lead to broader autism therapy coverage. But some providers now fear the Medicaid pilot will fail, based on its low pay and the minimum qualifications it requires for in-home therapists.
"I just don't want to be a part of something that's going to put the care and my profession at risk," said Jeff Skibitsky, owner of Alternative Behavior Strategies. "There's no use in providing a service that's going to be ineffective."
Adds Breanne Berg, with Apex Behavior Consulting: "It is just a waste of [the] money those parents have been fighting for for so long."
Both companies have signed up to provide services under the other pilots, but said they and others don't plan to seek contracts for the Medicaid portion. All three will provide ABA, in use since the 1960s, to children between the ages of 2 and 6.
Setting the rates • Utah's Medicaid pilot, which will serve up to 250 children through June 2014, will provide children with 20 hours a week of ABA in their homes along with respite care, for a total cost of $30,020 per child per year.
It set the pay for supervisors who must be board-certified behavior analysts or licensed psychologists at $80 a hour, to monitor the child's progress, make assessments and oversee the worker providing the actual therapy.
Those direct tutors must be 18, have a high school diploma and 20 hours of training on autism.
They should also have completed one semester of college or have six months of experience with the disabled population, though Medicaid will waive the last requirement if providers can't find such employees.
Medicaid will reimburse the businesses at $21.52 an hour, but the in-home tutors could make as little as $14.42 an hour.
By contrast, direct tutors for care under another pilot the one funded by the $1.8 million Autism Treatment Account will be paid $27 to $40 an hour.
Those rates were set by the four providers who applied for and received the grants: Alternative Behavior Strategies, Salt Lake City; Autism Therapy Services, Washington; Amy Peters Therapy Services, Mountain Green; and Kids on the Move, Orem. Most said their staff have a bachelor's degree or are working toward a degree.
'It isn't an easy thing.' • Berg, an autism contractor for the third pilot, one overseen by the Public Employees' Benefit and Insurance Program, said her employees wouldn't work for Medicaid's level of pay. PEHP also let the providers set their own rates, according to a provider.
And at Medicaid's level of reimbursement, her company couldn't afford to train less experienced people to provide the tutoring, she said.
"They need to increase the rate and increase the standard," she said, noting that the tutor will be entering a home where people may be highly stressed and the child may be aggressive. "It's just a really challenging condition."
She predicts at that pay rate, the Medicaid providers won't have experience tutoring children one-on-one at home. Without that, she said, "They're not going to be able to show [positive results] to the Legislature."
Skibitsky said the Medicaid contract makes more sense for therapy provided in a group setting, where a person with little experience could provide therapy but be constantly monitored. But under the pilot, the tutor will be supervised for one hour for every nine hours of unsupervised care, he said.
"You have a very fragile population here. There's a chance people [could do] things that are completely inappropriate," he said.
Sandy MacLeod, a behavior analyst at the University of Utah, said the U. may apply to be a Medicaid provider under the pilot in order to maintain high standards, though it doesn't yet employ in-home tutors. She agrees that tutors need more training than Medicaid is requiring.
"It isn't an easy thing. It's very, very specific and quite structured. It can make enormous changes if you do it right," she said. But she added: "You really need to know what you're doing. You can cause problem behaviors to occur and not have any positive effect at all if you don't have any training."
Balancing needs • Utah Medicaid Director Michael Hales said he's heard the complaints and notes Medicaid has never paid top dollar for services. He may increase the rates if they don't get enough providers, but he said that means fewer children would be served.
Providers can choose to pay the in-home tutors more money, he said, and supervisors will be able to tell if their staff isn't up to the work. He denied that it will turn into "glorified babysitting."
"Babysitters only have to be 12 years old in the state of Utah," he said. "We've tried to make it so that you don't just grab your next door neighbor and come in and do it."
HB272 sponsor Rep. Ronda Menlove, R-Garland, said she will look into the providers' concerns. However, she noted, doctors and dentists who take Medicaid patients also endure low reimbursement rates.
"Part of it is a pervasive problem with the limited funding that Medicaid has," she said.
An educator herself, she said she trains teachers on using ABA and said it's not "rocket science." But, she added, "We don't want a program that's ineffective, especially when we're using precious state dollars. We'll definitely be monitoring it."
One of the state's largest provider of disability services, Orem-based Chrysalis, has applied to be a pilot Medicaid provider. CEO Marc Christensen said his company, which serves about 700 teens and adults mostly in group homes, doesn't provide ABA in homes, or much of it in the residential settings.
But he said he has several staff who are board-certified behavior analysts. "If we're going to do the service we're going to do it well," he said.
Embry has seen Leland improve some since he enrolled at the Carmen B. Pingree School for Children with Autism and in their limited ABA program. But he rarely speaks and doesn't always respond to his name. He acts out in public and runs away.
She's read all she can about autism but feels overwhelmed so she doesn't see how someone with 20 hours of training will be effective. Yet she's so desperate, she added, that she'll gladly take the help if Embry is chosen in the lottery.
"Isn't that messed up?" she asks.
Lottery closed on Wednesday
Oct. 31 was the last day for Utah families to apply for free treatment for autism under a Medicaid-funded pilot project. By close of business Wednesday, 390 had applied for the estimated 250 slots, but the number of families could rise because applications were being accepted online until midnight and by mail. That means the Utah Department of Health will hold a lottery to choose the winners, ranking the applications at random while ensuring wide geographic distribution. Winners will be notified the week of Nov. 12, and services are expected to start by mid-November.
About the pilots
Thirty-two states require that health insurance companies cover autism services. Utah's autism community has been pushing for a similar mandate, but instead got HB272, which creates the three pilot programs. Pilot administrators will be tracking the cost and effectiveness of the treatments and report their results by next November.
The Medicaid pilot will serve up to 250 children through June 2014, the largest one funded by lawmakers during the 2012 legislative session.
Utah Department of Health is managing the Autism Treatment Account $1 million from the state, $500,000 from Intermountain Healthcare and $300,000 from Zion's Bank. It is expected to treat 25 children.
The Public Employees' Benefit and Insurance Program, will cover up to 50 children whose parents work for state or local government.