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Ryan's Law

Overview

Ryan’s Law is a law in South Carolina that requires insurance companies to cover autism. Ryan’s Law was considered nationally-groundbreaking legislation when it was enacted in 2007 because virtually no insurance companies offered meaningful coverage for individuals with autism at that time. The law requires coverage for, among other things, Applied Behavior Analysis therapy, which is a commonly-prescribed protocol for treating autism but was previously dismissed by many insurance companies as experimental. Additionally, under Ryan’s Law, individuals with autism cannot be discriminated against medically or refused insurance because of their affliction.

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 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, finally achieving legislative passage of the bill in May of 2007. The law went into effect in July of 2008 (1).

Background on Autism

Autism is a neurobiological disorder characterized by social and communication deficits and restricted patterns of behavior. The term “autism” is somewhat imprecise because some people use it interchangeably with “Autism Spectrum Disorder,” which is a category that includes three diagnoses, and others use it interchangeably with “Autistic Disorder,” which is one of the three diagnoses. (The other two are Asperger’s Syndrome and Pervasive Developmental Disorder-Not Otherwise Specified.) Under the Diagnostic and Statistical Manual of Mental Disorders IV (DSM-IV), the three Autism Spectrum Disorders belong to a broader class known as Pervasive Developmental Disorders (PDD). The broader category of PDD also includes Rett’s Syndrome and Childhood Disintegrative Disorder.

Autism presents very differently in those afflicted, but some common characteristics include abnormal or absent verbal communication; strict adherence to patterns and apprehension and anxiety when the patterns are disrupted; and lack of or very poor social skills (5).

Treatment for Autism; Funding Issues

Although there is no known cure for autism, there are treatments that may help ameliorate the disabling effects of autism. Various medications have been utilized to control some of the symptoms. Behavior and speech therapy are widely prescribed for individuals with autism and can help improve a child’s functioning considerably.

Children who receive no therapy or who receive therapy of inadequate intensity frequently require support for the rest of their lives, particularly in the case of severely autistic children (1). On the other hand, children who receive intensive therapy by properly trained therapists acquire considerable skills and, in some cases, can function as their normal peers. In 1987, Dr. Ivar Lovaas of UCLA conducted a study of autistic children and found that 40 hours of behavior therapy a week allowed almost half of the students to attend normal classes without aid and almost all students in the study showed considerable progress (5). Treatment with Applied Behavior Analysis therapy is extremely expensive, however, and thus has been unavailable to many children due to cost.

Prior to Ryan’s Law, insurers refused to cover Applied Behavior Analysis therapy for individuals with autism, deeming it “experimental,” or “educational” rather than medical in nature. Exclusions were often difficult to recognize within the text of health insurance policies. Historically, some policies claimed to cover autism, but excluded these important 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 autistic disorder.

Passage of the Bill

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.

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.

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.

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. (Governor Sanford’s veto can be read in full at governor.sc.gov/NR/rdonlyres/F6923F50-92A1-4CE2-9800-9387F11DA2D8/0/S20.pdf.) The next morning -- on 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. (Read the widely-forwarded message that Unumb sent to the Ryan’s Law Grassroots Gang on June 7, 2007 here: http://adventuresinautism.blogspot.com/2007/06/insurance-has-to-cover-autism-in-south.html.)  In April 2008, CNN profiled the passage of Ryan’s Law in “Autism Mom Takes on Insurers”:  http://www.cnn.com/2008/HEALTH/conditions/04/01/autism.insurance/index.html#cnnSTCText

Impact on Other States

Although one other state (Indiana in 2001) had passed meaningful autism insurance legislation at the time the South Carolina legislature acted in 2007, the passage of Ryan’s Law served as a catalyst for massive reform efforts around the country. Virtually every state has either considered or passed similar legislation following the passage of Ryan’s Law.

In 2007, the Texas legislature approved a bill to require insurance coverage for children with autism from ages 3-5; that law was amended in 2009 to expand the age range. In 2008, five more states followed suit: Arizona, Louisiana, Florida, Pennsylvania, and Illinois. The non-profit advocacy and research organization Autism Speaks embraced autism insurance reform as one of its primary goals, which led to more action and greater awareness of the need to pass legislation in the states and federally.

In 2009, seven states passed autism insurance legislation: New Mexico, Montana, Nevada, Colorado, Connecticut, New Jersey, and Wisconsin. Federal legislation known as the Autism Treatment Acceleration Act is pending in Congress.

Summary of the Law

Ryan’s Law applies to individuals afflicted with one of the three diseases on the spectrum, which consist of Autistic Disorder, Asperger’s Syndrome, and Pervasive Developmental Disorder-Not Otherwise Specified.

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 1st based on the Consumer Price Index.

It further prohibits insurance companies from refusing autistic children other medical treatment or attention because of the disease. 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.

For details on who is covered under Ryan’s Law, consult the flow chart in the last section (6).

Text of the Law

SECTION 1. Article 1, Chapter 71, Title 38 of the 1976 Code is amended by adding: "Section 38-71-280.

(A) As used in this section:

(1) 'Autism spectrum disorder' means one of the three following disorders as defined in the most recent edition of the Diagnostic and Statistical Manual of Mental Disorders of the American Psychiatric Association:

(a) Autistic Disorder; (b) Asperger's Syndrome; (c) Pervasive Developmental Disorder - Not Otherwise Specified.

(2) 'Insurer' means an insurance company, a health maintenance organization, and any other entity providing health insurance coverage, as defined in Section 38-71-670(6), which is licensed to engage in the business of insurance in this State and which is subject to state insurance regulation.

(3) 'Health maintenance organization' means an organization as defined in Section 38-33-20(8).

(4) 'Health insurance plan' means a group health insurance policy or group health benefit plan offered by an insurer. It includes the State Health Plan, but does not otherwise include any health insurance plan offered in the individual market as defined in Section 38-71-670(11), any health insurance plan that is individually underwritten, or any health insurance plan provided to a small employer, as defined by Section 38-71-1330(17) of the 1976 Code.

(5) 'State Health Plan' means the employee and retiree insurance program provided for in Article 5, Chapter 11, Title 1.

(B) A health insurance plan as defined in this section must provide coverage for the treatment of autism spectrum disorder. Coverage provided under this section is limited to treatment that is prescribed by the insured's treating medical doctor in accordance with a treatment plan. With regards to a health insurance plan as defined in this section an insurer may not deny or refuse to issue coverage on, refuse to contract with, or refuse to renew or refuse to reissue or otherwise terminate or restrict coverage on an individual solely because the individual is diagnosed with autism spectrum disorder.

(C) The coverage required pursuant to subsection (B) must not be subject to dollar limits, deductibles, or coinsurance provisions that are less favorable to an insured than the dollar limits, deductibles, or coinsurance provisions that apply to physical illness generally under the health insurance plan, except as otherwise provided for in subsection (E). However, the coverage required pursuant to subsection (B) may be subject to other general exclusions and limitations of the health insurance plan, including, but not limited to, coordination of benefits, participating provider requirements, restrictions on services provided by family or household members, utilization review of health care services including review of medical necessity, case management, and other managed care provisions.

(D) The treatment plan required pursuant to subsection (B) must include all elements necessary for the health insurance plan to appropriately pay claims. These elements include, but are not limited to, a diagnosis, proposed treatment by type, frequency, and duration of treatment, the anticipated outcomes stated as goals, the frequency by which the treatment plan will be updated, and the treating medical doctor's signature. The health insurance plan may only request an updated treatment plan once every six months from the treating medical doctor to review medical necessity, unless the health insurance plan and the treating medical doctor agree that a more frequent review is necessary due to emerging clinical circumstances.

(E) To be eligible for benefits and coverage under this section, an individual must be diagnosed with autistic spectrum disorder at age eight or younger. The benefits and coverage provided pursuant to this section must be provided to any eligible person under sixteen years of age. Coverage for behavioral therapy is subject to a fifty thousand dollar maximum benefit per year. Beginning one year after the effective date of this act, this maximum benefit shall be adjusted annually on January 1 of each calendar year to reflect any change from the previous year in the current Consumer Price Index, All Urban Consumers, as published by the United States Department of Labor's Bureau of Labor Statistics."

Who Qualifies?

Here is an easy reference flow chart for determining if a child with autism in South Carolina is covered by Ryan’s Law: http://www.scautism.org/misc/ryanslawflow chart.pdf