New York insurance companies that were not covering the screening, diagnosis and treatment for autism spectrum disorders will now be mandated to do so effective Nov. 1, 2012.
New York is the 29th state to pass some version of Ryan's Law, a bill that started in South Carolina in 2005 after Lorri Unumb, who was at the time a law professor at the Charleston School of Law and a mother of a two-year-old autistic son, decided to write a bill that would mandate insurance companies provide up to $50,000 in behavioral therapy annually for children up to age 16. The New York bill puts an annual cap of $45,000 on coverage.
"It's taken the country by storm and it's not accidental; it was time to end the discrimination," says Lorri Unumb, senior policy advisor and counsel with Autism Speaks. "The bottom line is that these are not families asking for a handout, they've been paying their insurance premiums to ensure against an unforeseen medical disaster. When the unforeseen medical disaster happens and because it isn't a broken leg, but an illness of the brain, they couldn't get the treatment."
The law could save families with autistic children as much as $50,000 per year, and schools and governments $13 million in special education and other expenses, but the cost will be passed onto employers and policyholders. The state Health Plan Association estimates the bill, signed into law last week, will cost families "hundreds of dollars" and employers tens of thousands of dollars. Unumb says that in South Carolina, the first state to pass the mandate, this translated to 44 cents per employee, per month and the state employee health plan $2 million last year.
America's Health Insurance Plans Vice President of Communications Susan Pisano would not say whether the association is for or against the specific autism mandate, but stated the organization is against mandates across the board.
"The legislators who propose these are trying to help their constituents, but given the cumulative impact of thousands of mandates, the opposite has been achieved," she says.
New York Assembly Speaker Sheldon Silver told the AP that the law debated for seven years is “important and highly compassionate” legislation.
Though the legislation will not apply to employers with self-funded plans, "all of the interests and concern about autism and the pressure on parents still applies to them," says Ronnie Goff, vice president at the National Business Group on Health. A year ago, they conducted a survey of members and found that most members covered screening and diagnosis, but treatment varied widely.
"Typically there is coverage for specific treatments, and many times they will cover certain treatments with certain specified conditions," she says. One employer had an autism care advocate to help families with diagnosis and only then is the treatment covered, but even that is few and far between. She says the big problem is employers are uncertain about what actually works.
In April, the Agency for Healthcare Research and Quality released an analysis of Autism treatments from medications to behavioral therapies to alternative medical practices. It found that few treatments are backed by solid evidence and they could not support any single approach as the most effective.
However, a study out of UCLA in 1987 found that of the children who were treated with behavior therapy, 47% achieved normal IQ and another 40% improved functioning dramatically but not enough to achieve normal IQ.
In light of these findings, some insurers may be hesitant to foot the bill for something that may not work.
Nevertheless, families are still coping with the effects of autism; one in 110 children in the U.S. has an Autism Spectrum Disorder, according to the Centers for Disease Control, and symptoms run the gamut, including impaired thinking, feeling, speaking and the ability to relate to others.
Unumb says that while prescribed 40 hours a week of intensive therapy at two years old, her now 10-year-old son is still largely nonverbal, but he was able to learn how to imitate.
"You can rewire the child's brain,” says Unumb.
“The pushback has been similar across the country; there is a lack of understanding. So many disabilities of this sort are really static, but there is treatment for this," she says. "Half of the people who get intensive therapy will overcome it so that they can go to a school indistinguishable to their peers; they might not lose their autism diagnosis, but they can go."
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