TRAVERSE CITY — Physician Sara Wine makes a good living by most standards.
But even she can't afford to pay for her son's autism treatment in Michigan.
"In Michigan autism isn't considered a medical diagnosis so insurances don't cover services," said Wine, a former Traverse City practitioner who moved to Indianapolis four months ago to get better services for her son, 3. "We tried for about two years to maximize services in Michigan, but all the good services and good providers have fled Michigan because they couldn't get paid, and you have to pay for your services out of pocket."
An autism diagnosis hits 1 in 110, and more families are struggling with the worry and expense of finding treatment and special education for children with the complex developmental disorder.
It can cost $3.2 million to take care of an autistic person over the course of a lifetime, according to a Harvard School of Public Health study. Direct medical and nonmedical costs alone can add up to as much as $67,000 a year or more, depending on the level of disability.
That figure includes medical costs like doctor visits, prescriptions and occupational and speech therapy, as well as expenses for things like special education, camps and child care.
Many health insurance policies do not cover autism treatments, while those that do often have severe limits. Treatment is individualized so insurance companies have few uniform protocol standards to follow. That means parents often have to lobby for certain therapy or treatment.
Many, like applied behavioral analysis (ABA), a common autism treatment, are considered by insurance companies as "experimental," though ABA and others are supported by scientific bodies like the Surgeon General and the American Academy of Pediatrics.
Out-of-pocket costs soar
In Michigan, Wine said she paid $80,000 out-of-pocket over two years for evaluation and treatment of her son, including all of the above plus behavioral therapies, physical therapy and supplements. In Indiana, even his doctor's visits are covered by her HMO.
"The insurance company doesn't even bat an eye when they write a check for his services," she said.
Traverse City resident Cari Noga didn't have a problem getting her insurance to cover weekly speech and occupational therapy services for her son, Owen, 5, but she said there's a limit of 60 visits. She spends $80 a month out-of-pocket for co-pays.
Now she wants to consult with a local child psychiatrist who specializes in the evaluation and treatment of children with autism. But she said he doesn't accept insurance.
"The evaluation is three appointments, almost $800 total, and that's just to find something out and to see what he might recommend we do," Noga said. "We've used a behavioral psychologist to help (Owen) deal with specific behaviors like lack of cooperation ... and that was out-of-pocket, too."
Kelli Stapleton gets "community living support" for her autistic daughter, Issy, 11, through a Michigan Medicaid waiver that provides for staff without regard to family income. The Elberta resident said waivers are rare and dispensed only for the most severe cases. And because most providers don't get paid, families don't have many from which to choose.
"Michigan has so few resources for autism," said Brian Nelson, a Traverse city resident and father of a 10-year-old son with autism. "Because you can't bill to insurance, people don't come here and set up shop. For instance, there's no one in northern Michigan that provides ABA treatment. That's why insurance reform is so needed."
This month Virginia became the 26th state to pass legislation requiring state-regulated group health plans to include autism coverage, though many states have caps on the mandates, according to the advocacy group Autism Speaks. All but three other states have similar bills pending,
In addition, federal law now prohibits insurance companies from refusing to issue or renew health-insurance coverage for children because of pre-existing conditions, including autism.
State laws don't apply to benefit plans that employers fund themselves. Self-funded plans are regulated by a federal statute, the Employee Retirement Income Security Act of 1974, or ERISA. Still, a growing number of self-funded companies, like The Home Depot, are providing more health benefits for autism.
Riders 'not the answer'
Blue Cross Blue Shield of Michigan offers its customer groups coverage for autism therapies that provide intensive early intervention. But the coverage is a rider, only covers children to age 6 and provides for only 60 visits, said Paul Welday of the Michigan Autism Insurance Reform Coalition.
"We don't think riders work and are not the answer," Welday said. "The same people that are paying out-of-pocket today would be the population that supports the economics of a rider, so it is like self-pay. And age 6 is simply inadequate. In Michigan, many children are not diagnosed until after that age and 60 visits are far too low of a cap.
"This would be like saying we cover pediatric cancer for 60 visits up to age 6, anything beyond and you have to raise the money to pay for the difference," Welday added. "No other medical condition is addressed in this fashion or treated like autism is."
Welday is the father of a teenager with autism. He worked to encourage passage of a 2009-10 autism reform bill championed by former Michigan House Republican Brian Calley, now lieutenant governor. Calley also is the father of a child with autism.
The legislation passed the House, but died in the Senate Republican caucus at the end of last year.
Now momentum is re-emerging in Michigan, Welday said. A set of bills has been introduced in the state Senate and referred to the Committee on Insurance. Welday believes it will have bipartisan support.
"I can assure you that autism reform is going to happen in the state of Michigan. The question is how many kids are we going to lose between now and the time it's passed?" he said. "This is legislation whose time has come. It's good policy, it's good politics and most important of all it's the right thing to do."
Proponents say legislation would result in a premium increase of less than 1 percent and would save the state $14 billion in lifetime costs. It also would keep college graduates with degrees in autism therapies in Michigan and help prevent the families of Michigan's 15,000 autistic children from leaving the state.
Michigan ranks in the bottom seven states in a recent Autism Speaks online "autism community" survey of the best places for people with autism to live.
The reform also would lift some burden from schools, which provide special education services for autistic children under the Individuals with Disabilities Education Act.
"The schools are the biggest provider, but that's not their job," said Traverse City resident Andrea Hentschel, whose son, 7, is autistic. "Their job is to teach children academic skills, not to teach them social skills like when to zip their coat up."
Wine, whose son was non-verbal when he left Michigan but now speaks 15 words, said the state can't afford to take a pass on the bill.
"I don't think legislators and (others) realize what a huge financial burden these kids are going to be if they don't get services early, because when they get older they're going to need disability, Medicare and adult services," she said. "Where if they were to get services at a young age, there's a good chance they could recover from this or be higher-functioning and need less services."
• The Autism Advisory Group, www.autismadvisorygroup.com
Consultation in family recovery, group recovery and verbal behavior center/school development
• Autism Resource Network of Northwest Michigan, www.autismresourcenetwork.org
Parent meetings on the second Monday of the month, 6:30-8:30 p.m. at Munson Medical Center, Basement Conference Room 11
• Children's Therapy Corner, www.childrenstherapycorner.com
Specialized programs, therapies and projects including the P.L.A.Y Project based on Dr. Stanley Greenspan's Floor Time therapy, therapeutic listening therapy, aquatic therapy, occupational therapy, speech therapy
• Early On -- Michigan, www.1800earlyon.org
Intervention services for infants and toddlers with developmental delays or disabilities
• Traverse Bay Area Intermediate School District, www.tbaisd.k12.mi.us/departments/spec_autism.asp
Self-contained programs, teacher consultant services, involvement with the START project, management of the education experience in northern Michigan public schools
• Special Education Parent Advisory Council, www.tbaisd.k12.mi.us/departments/spec_sepac.asp
Parent meetings on the second Saturday of the month during the school year to discuss special education issues and challenges
• Autism Speaks, autismspeaks.org
Information and advocacy
A handful of organizations including Easter Seals and the National Autism Association offer financial help to struggling families. Autism Family Resources and United Healthcare Children's Foundation also offer grants to pay for autism treatments.
For more local services contact the Autism Resource Network of Northwest Michigan.