Ryan's Law

Ryan's Law is a South Carolina law which requires insurance companies to cover treatments for autism. The law states that insurance companies must provide up to $50,000, annually, on behavioral therapy, up to the age of 16. The law provides coverage for various treatments, including Applied Behavior Analysis, which was previously denied as "experimental". Ryan's Law also prohibits insurers from refusing other medical care to children because of their autism. The law does not apply to people who (or companies which) are self-insured.

The bill was authored by Lorri Unumb, who was at the time a law professor at the Charleston School of Law, and the mother of a four-year-old son with autism. Passage of the legislation took nearly two years, and was the result of an intense grassroots campaign which was orchestrated by Unumb and supported by hundreds of families in South Carolina. Lacking funds to hire a lobbyist, Unumb and the supporters, known as the Ryan’s Law Grassroots Gang personally lobbied South Carolina legislators through visits and letter-writing campaigns. The bill was passed in May, 2007, and the law went into effect in July, 2008.

Terminology related to autism

The term “autism” is somewhat imprecise because some people use it to refer to any or all of the conditions on the autism spectrum, an umbrella term which contains autism, Asperger syndrome and PDD-NOS. Under the Diagnostic and Statistical Manual of Mental Disorders IV (DSM-IV), the three conditions on the autism spectrum belong to a broader class known as Pervasive Developmental Disorders (PDD). The broader category of PDD also includes Rett syndrome and childhood disintegrative disorder.

Funding for autism therapies

See also: Autism therapies

Prior to the passage of Ryan’s Law, insurers refused to cover Applied Behavior Analysis (ABA) therapy for autistic people, deeming it "experimental" or "educational", rather than medical. Exclusions were often difficult to recognize within the text of health insurance policies. Historically, some policies claimed to cover autism, but excluded these therapies. An intensive therapy program often ranges from $25,000 to $100,000 per year, depending on the severity of the child’s condition, geographic factors, and more. The financial strain facing families with autism, coupled with the realization that many children could not access treatment at all simply because of cost, is what led Lorri Unumb to write the bill that became Ryan’s Law. The law is named “Ryan’s Law” in honor of Unumb’s oldest son, Ryan Reed Unumb, who has severe autism.

Passage of the bill

Initial filing

The bill written by Unumb was pre-filed in the South Carolina legislature in late 2005, with Rep. Nathan Ballentine (R-Irmo) as the primary sponsor in the South Carolina House of Representatives and Rep. Ray Cleary (R-Murrell’s Inlet) as the primary sponsor in the South Carolina Senate. The companion House and Senate bills were first considered by the South Carolina legislature during the 2006 session. The Senate bill (S.958) was assigned to the Senate Banking and Insurance Committee, where it received a great deal of support from the committee’s chairman, Senator David Thomas (R-Greenville). Senator Thomas set up a subcommittee to hold a public hearing on the bill, which occurred on January 12, 2006 and was attended by hundreds of supporters from the autism community. Witnesses in support of the bill included Professor Unumb, Dr. Gina Green, Dr. Jane Charles, Dr. Shelley Holstrum, Dr. Scott Edwards, and Walt Jenner, among others.

Medicaid waiver

In the South Carolina House of Representatives, the bill (H.4351) was assigned to the House Labor, Commerce and Industry Committee (LCI), chaired by Rep. Harry Cato. During public hearings before the Insurance Subcommittee of LCI, the House bill was amended considerably as part of a deal struck by the insurance industry and some legislators. The insurance language was removed from the bill and replaced by language directing the South Carolina Department of Health and Human Services and the Department of Disabilities and Special Needs to set up a government program to benefit children with autism. As amended, the bill passed in 2006, and shortly thereafter South Carolina applied to the federal government for a Medicaid waiver to establish the Pervasive Developmental Disorders waiver program, through which children with autism aged 3 through 11 can apply for funding to cover an Applied Behavior Analysis therapy program (up to $50,000 per year for 3 years). Approximately 100 South Carolina children began receiving therapy services under the new program when it launched in 2007, and the number increased to more than 400 children by 2009.

Return to legislature

On the insurance front, Unumb and two other “autism mothers” who had become key advocates during 2006 (Lisa Rollins and Marcella Ridley) returned to the South Carolina legislature in 2007 to again pursue the insurance legislation. This time around, the House bill (H.3468) was sponsored by Rep. Skipper Perry (R-Aiken), with continued support from the 2006 lead sponsor Rep. Nathan Ballentine. The Senate bill (S.20) was sponsored by Sen. Dick Elliott (D-Myrtle Beach), with continued support from the 2006 lead sponsor, Sen. Ray Cleary. Additional hearings were held on the companion bills during the 2007 session, and numerous legislators co-sponsored the bills. Sen. Joel Lourie (D-Columbia) played an instrumental role in arranging negotiations between the autism community and the insurance industry and in furthering discussions during intense deadline pressure. Eventually, the General Assembly passed the Senate bill (S.20) on May 25, 2007.

Veto and override

News of the successful legislation spread quickly throughout the national autism community, but the battle was not over. South Carolina Governor Mark Sanford vetoed the bill on June 6, 2007, the penultimate night of the 2007 legislative session. The next morning—the last day of the legislative session—the Ryan’s Law Grassroots Gang showed up in force at the South Carolina State House to plead with the legislators to put their bill on the day’s agenda and override the governor’s veto. On June 7, 2007, the South Carolina Senate overrode the governor’s veto on a voice vote, and the South Carolina House overrode the veto on a roll call vote. Both chambers’ override votes were unanimous, creating a dramatic and emotional ending to the two-year battle to secure insurance coverage for children with autism in South Carolina, which Unumb covered in a blog post. In April 2008, CNN profiled the passage of Ryan’s Law in “Autism Mom Takes on Insurers”.

Summary of the law

Ryan’s Law applies to people with a condition on the autism spectrum: either autism, Asperger syndrome, or PDD-NOS. It mandates that insurance companies provide up to $50,000 a year of coverage for behavioral therapy until the age of 16. The child must be diagnosed at age eight or before, and the $50,000 maximum on behavioral therapy is to be adjusted every year on January 1 based on the Consumer Price Index. It further prohibits insurance companies from refusing autistic children other medical treatment or attention on the basis of their condition. Autism cannot be used as a basis for refusing care for other medically reasonable or necessary treatment or procedures. The bill does not cover individuals who are insured through employers that have self-funded plans. Such plans are not subject to state regulation and are governed by federal ERISA law. In 2009, federal legislation was introduced in both chambers of Congress to require self-funded plans to offer autism benefits.

Laws in other U.S. states

Different sources have reported varying numbers of states with mandated coverage for autism. The numbers range from 13 to 24. The nature and extent of the requirements vary widely.

External links

• Text of the law: from South Carolina Code of Laws, Title 38 (Insurance), Chapter 71 (Accident and health insurance); see Section 38-71-280.
• A flowchart for determining whether a child with autism in South Carolina is covered by Ryan's Law