Slow and Steady Progress

Fifteen states now mandate insurance coverage of autism services.

by Elizabeth McBreen

Lightest shade of blue are states with autism mandates. The next shade of blue mandates are introduced. Darkest have neither.

As the federal government battles over national health care reform, advocacy groups around the country continue working towards passing state insurance mandates. Fifteen states now have laws mandating the coverage of autism services. Another 30 have introduced or re-introduced bills this year and are hoping to join the states with coverage. Taking on the powerful insurance lobbies is difficult in good times, and with some states still reeling in the aftermath of the economic downturn, convincing state legislatures to pass mandates has become even more challenging.

New York
Mike Smith, board director of the Foundation for Autism Information and Research (FAIR) has been working on insurance reform in New York for over five years. Last year, a bill with a $36,000 cap and a 21 year age limit on services was introduced in the Senate and Assembly. Many in the autism community, including Smith, were not satisfied with the bill. This session, the bill was re-introduced with an amendment. It now has no dollar or age cap. Smith says the current bill has a wide base of support, including the American Academy of Pediatrics (AAP), the Medical Society of the State of New York, Talk About Curing Autism (TACA), SafeMinds, Generation Rescue, and the Autism Society of America (ASA).

Insurance lobbyists, who are often the strongest opponents to autism insurance mandates, argue that if services are covered, premiums will skyrocket. Smith says this has been proven untrue by several independent actuaries. Their equations show that mandated coverage will mean an increase of less than one percent. “The bottom line is that New York State subsidizes the insurance companies,” says Smith. “Many families have insurance, but Medicaid probably pays about five times what the insurance companies pay. That puts a lot of burden on the counties.” 
Another hurdle created by insurance companies in New York is the difference between habilitative and rehabilitative services. Physical therapy prescribed to a stroke victim is covered because it is considered rehabilitative. An autistic child is considered to have been born with autism and therefore the habilitative services are not covered. The bill currently in front of the New York Senate would mandate coverage of habilitative services.

Smith says that the discrimination against autistic children has to end. “If medically necessary services were given to a child who does not have autism, they would be covered,” he says. “Insurance companies say they can’t afford it, but they cover Rogaine, Viagra, gym memberships in some cases. These things are not medically necessary and should not trump what is.” Smith says it is crucial that New York state residents call their legislators and urge them to sign on as a co-sponsor for the bill. “They need to show support because there will be a lot of politics and the insurance lobbies are very strong,” says Smith.

In early March, Smith’s bill met another hurdle when Senator Neil Breslin, the chair of the Senate Insurance Committee, introduced another autism insurance reform bill that is meant to combine all the other reform initiatives. Autism Speaks, the only major advocacy group that had thus far withheld its support from Smith’s bill, threw its support behind Breslin’s bill. “We decided to support this bill because it is the chairman’s bill, and it has the best chance of passing,” says Rebecca Shaffer, advocacy communications manager for Autism Speaks.

Shaffer says that the Senate Bill 6123, Smith’s bill, does not require that treatments be evidence-based or clinically proven. “We look for that in all of the legislation we support,” says Shaffer. “There is almost no legislation that requires treatments that are not clinically proven.” Shaffer says that under Breslin’s bill, coverage of screening, diagnosis and treatment of autism spectrum disorders would follow “regulations promulgated by a group of agencies.” These agencies include the Office of Mental Retardation and Developmental Disabilities (OMRDD) and the New York State Office of Mental Health (OMH). Until those regulations are in place, insurers would have to follow the guidelines of the AAP for recommended treatments. Shaffer says that unlike the other reform bills that will need to be referred to a committee, Breslin’s bill will move forward because the chairman will want his bill to pass.

Smith and other advocates sat down with Senator Breslin and his staff to talk about amending Senate Bill 7000 shortly after it was announced, but no significant changes were made to the bill. “Autism Speaks and Breslin have a more regulatory model. They say that ours is a prescriptive model. We feel that we need a direct mandate. If we go with a regulatory model, we’ll be fighting the insurance companies every step of the way,” says Smith. Because Breslin’s bill requires the state to cull its own set of guidelines from the AAP’s national guidelines, Smith fears there will be increased risk of medical malpractice resulting from conflicting recommendations. There will also be a need for a new “autism bureaucracy” at the state level which will increase state spending. “OMRDD and OMH have not even recognized that there is an autism epidemic,” says Smith. “Do we really want these agencies writing regulations on treatment?” Smith says that Senate Bill 7000 can be made acceptable if amended, but the autism community will not support it in its current form.

Missouri
Missouri residents are also hoping this is the year that lawmakers pass a mandate. Last year, which was the second time an insurance bill had been introduced, the bill was passed by the Senate but defeated in the House when Missouri’s representatives decided the timing was not right for an insurance mandate. Parents and advocates used the time between sessions to keep talking about the issue and build momentum for the bill’s third round through the House and Senate. So far, the bill has passed floor votes in both chambers, showing a wide base of support.
Rebecca Fehlig is the executive director of the St. Louis Chapter of Autism Speaks. She says that the centerpiece of the bill is Applied Behavior Analysis (ABA). “This is not to say that it’s the only treatment, but ABA is evidence-based, it’s the most commonly denied, and it is extremely expensive.”

The bill will most likely have a dollar cap of between $36,000, the current cap in the House bill, and $55,000, the current cap in the Senate bill, and an age limit of 18 years, according to parent advocate Ginger Luetkemeyer. Any age cap is not ideal says Luetkemeyer, “but the insurance companies wanted to narrow the parameters on the bill, and they have been successful in some cases.” The bill was originally filed with no caps, but the Senate made the concession to the insurance companies to keep the bill in play. “Unfortunately, that is the necessity of getting something passed. While we hate it, it’s better to have coverage and be able to repeal an age cap later.”

One of the tactics the insurance lobby has used in Missouri is to make language on the licensure process of behavioral analysts necessary. Missouri families are against stringent language that could severely limit the amount of people who qualify for a license to practice ABA. The House bill currently includes licensure language, while the Senate has held off.
Luetkemeyer says there is no indication of major roadblocks for the bill at this point. The questions that remain are what the final bill will cover, the cost of the bill, and whether small businesses will be covered. Currently, both bills include language that would cover them, but there is an opt-out clause if the business can prove financial loss due to the coverage.

Oklahoma
In Oklahoma, parents were on their way to passing insurance reform two years ago, until progress came to a halt in the House. The bill would have covered up to $75,000 a year of behavioral therapy. Wayne Rohde drafted the original language of the 2008 bill. Nick’s Law, named after Rohde’s son, was re-introduced in February of 2009 after being defeated the previous year. Republicans currently control the House and the Senate in Oklahoma, and Rohde, a Republican himself, is convinced that the majority party has set an agenda that is stacked against the autism community.

The Oklahoma legislature set new procedural rules recently, rules that Rohde says was designed specifically to hold up progress on an autism insurance mandate. One new procedural rule says that any insurance mandate must be introduced in an odd year, studied during the next even year and then be passed or not passed the following odd year.
While Oklahoma parents are waiting to re-introduce an insurance bill, they are working on other initiatives.

Virginia
Virginia parents and advocates were also dealt a hard blow this session. Although the Senate passed its bill, the House Commerce and Labor Subcommittee failed to pass the House version. Once the Senate passed its bill, it was sent back to the House committee that had already failed to pass the mandate. The committee never voted on the bill. Pat DiBari, president of the Virginia Autism Project, says that the community was never given a reason for the refusal to vote. The Virginia session ended on March 13.

This was the third time through the process for the Virginia mandate. After it failed the first time in 2007, DiBari began growing a larger grassroots effort by organizing autism summits. “We needed to rally people to get support. We got a bus and traveled around; CNN joined us. It got a lot of media attention,” says DiBari. This year, DiBari held even more summits in more cities around the state to get the word out.

Although DiBari plans on introducing the bill again next session, the loss was particularly discouraging since the mandate had already been significantly pared down from its original version. Last session, the bill had an age limit of 22 years old. The bill introduced this past session focused on early intervention and would have only covered children ages 2 to 9. “That’s when a child’s brain is developing rapidly and we felt that would have the largest impact. Then the Senate cut it down to ages 2 to 6. That’s the bill that passed in the Senate.”

In spite of the bill’s current fate, DiBari has garnered a large amount of bipartisan support and has spoken with the Speaker of the House about the mandate. There has also been an endorsement of sorts from the Joint Legislative Audit Review Committee (JLARC). According the committee’s cost-benefit analysis, intensive early intervention in young children would save over $137,000 per child in special education costs. “The bill would actually save the state money,” says DiBari.

An insurance bill in Iowa has been passed in the House and New Hampshire and Ohio’s bills have been passed by the Senate. The bills will now move to the other chamber for a floor vote. As parents all across the country band together to get insurance coverage of their children’s services, they know that they cannot do this work alone. Smith has been battling for coverage of autism services for years, and he knows that strong bi-partisan support of lawmakers is critical to passing an insurance mandate. “I believe that we will not meet the needs of this population without collaboration of the private and public sector.”