By Stuart Spielman
Since President Barack Obama signed the Patient Protection and Affordable Care Act (ACA) last year, the impact on coverage for autism benefits has slowly begun to take shape. As federal agencies implement the new law, three U.S. Courts of Appeals have ruled on theconstitutionality of the ACA.The U.S. Supreme Court is expected to weigh in by next summer.
Last week, the Institute of Medicine (IOM), the health arm of the National Academy of Sciences, proposed a set of guidelines for the U.S. Department of Health and Human Services (HHS) to follow in deciding what benefits should gain coverage.The IOM report does not define an autism benefit, but rather lays the groundwork for HHS to issue regulations that may determine autism coverage for affected individuals. Entitled “Essential Health Benefits: Balancing Coverage and Cost,” the report was requested by HHS.
As noted in an earlier blog, words do matter in implementing the ACA. HHS should not ignore congressional intent that the ACA make effective, evidence-based care available to people with autism. Nor should HHS ignore the difficulties families have experienced in accessing proper treatment and the consequences of inadequate care.
The ACA requires certain insurance plans to cover an “essential health benefits” package — a set of services, treatments, and care defined by HHS.The essential benefits package must include at least 10 general categories of benefits, including “behavioral health treatment” and “habilitative services and devices,” and it must be equal to the scope of benefits provided under a typical employer plan.
The IOM recommends that HHS use the following process to establish the initial essential health benefits package:
1. Start with the scope of benefits provided under a typical small employer plan in today’s market, then modify those benefits to reflect the ACA’s 10 general categories of benefits and a framework developed by the IOM that accounts for economics, ethics, evidence-based practice, and population health
2. Adjust this preliminary package by a cost target based on what small employers and their employees can afford
3. Weigh possible trade-offs through public discussion of benefit costs
4. Define the essential health benefits package as specifically as possible. If a service can reasonably be construed to fall into any general category and is not expressly excluded, it should be considered eligible for coverage as long as judged medically necessary for a particular patient
The IOM concluded that state-mandated benefits should not receive any special treatment in the definition of the essential health benefits, but rather be evaluated by this process.Implementation will begin in 2014, and by 2016 the essential health benefits are expected to apply to 68 million people.
With the release of the report, it is now up to HHS to act upon the IOM’s recommendations. In doing so, HHS should bear in mind these findings from the 2005/06 National Survey of Children with Special Health Care Needs:
- 48.6% of children with autism have inadequate insurance (as compared to 32% of children with special health care needs other than autism)
- 31.1% of children with autism have an unmet need for a specific health care service (14.8%)
- 38.6% of families who have a child with autism have financial problems (16.7%)
- 57.2% of families who have a child with autism cut back or stop working (21.7%)
As the IOM recommends, HHS should be guided by a duty to protect the most vulnerable members of society.HHS Secretary Kathleen Sebelius has promised to issue regulations soon.
“But before we put forward a proposal, it is critical that we hear from the American people,” Sebelius said. “To accomplish this goal, HHS will initiate a series of listening sessions where Americans from across the country will have the chance to share their thoughts on these issues. These conversations will help us ensure that every American can access quality, affordable health coverage they can rely on.”
Autism Speaks will announce the listening sessions once they are scheduled. It will be critical to make your voice heard.
September 7 was an important day for the nation’s autism community as Congress began the effort to renew the landmark 2006 Combating Autism Act. By unanimous voice vote, the Senate Health, Education, Labor and Pensions (HELP) Committee moved S.1094, a bill which would renew the act for another three years, out of committee and on to the full Senate for a floor vote. While an important step, the HELP vote was just the first of several that Congress will need to complete by September 30 when the law expires.
To keep up the momentum, it is important that advocates urge those U.S. Senators who have yet to cosponsor S.1094, the Combating Autism Reauthorization Act (CARA), to do so immediately. Nearly a third of the Senate has signed on to the bill, including five new cosponsors this week, but we need more. Visit our CARA Action Center to learn how.
Getting the bill voted out of the HELP committee required that a quorum of 12 Senators were in attendance. An intensive grassroots efforts by Autism Speaks through the Labor Day weekend helped ensure that 14 members attended and all voted to approve the bill for consideration by the full Senate. When that vote will occur is uncertain.
In the U.S. House of Representatives, the CARA bill (HR.2005) similarly must first move out of the Energy & Commerce Committee before it can go to a full vote on the House floor. But before the committee acts, it must receive confirmation from Rep. Eric Cantor (R-VA), as the House Majority Leader, that he will allow the bill to go to a floor vote. Autism Speaks has launched a radio ad campaign in Rep. Cantor’s home district (Richmond-Harrisonburg) encouraging him to support CARA. Leader Cantor was a co-sponsor of the 2006 CAA, serves on the Congressional Autism Caucus and has attended Walk Now for Autism Speaks events in the past.
The original 2006 act authorized nearly $1 billion of federal spending through 2011 on biomedical and treatment research on autism. CARA would continue funding at current levels, authorizing $693 million over the next three years, without adding to the federal debt. The 2006 law was critical by establishing autism as a national health priority. Federal funding was increased by virtue of the 2006 law, leading to significant advances in the understanding of autism. The CAA required the federal government to develop a strategic plan to expand and better coordinate the nation’s support for persons with autism and their families. Important research findings have resulted, critical studies are underway and promising new interventions have been developed for children with autism, helping them to lead more independent lives, thereby reducing the need for publicly funded special education and social services.
Once a final bill is voted out of Congress, it goes to President Obama who has promised to sign a reauthorization bill this year. ALL of these steps must be completed by September 30 when the original act expires. To track the progress of the CARA legislation, visit the CARA home page at Autism Votes.
With just a month to go, time is running short for Congress to renew the landmark Combating Autism Act of 2006. A critical first step arrives Wednesday September 7 when the U.S. Senate’s Health, Education, Labor and Pensions (HELP) Committee takes up S.1094, the Combating Autism Reauthorization Act of 2011(CARA.)
It is essential that a sufficient number of committee members attend the September 7 meeting and then vote to send the CARA bill on to the full Senate for a floor vote. Visit our CARA Champions page here to:
1) find out if your Senator is a member of the HELP Committee
2) make sure they have RSVP’d to attend this critical hearing and
3) find out how to encourage them to RSVP if they have not.
Meanwhile, the U.S. House of Representatives must also vote its version of the CARA bill (HR.2005) out of the Energy & Commerce Committee and on to a floor vote. Once these steps are taken, the House and the Senate must agree on a final version of the CARA bill before it can be sent to President Obama for his signature. This is a lot of work! And it all has to get done by September 30!
Why is this so important? The enactment of the Combating Autism Act (CAA) in 2006 was an historic moment for our community as it has guided the federal government’s response to the staggering rise in autism across the United States. Because of the CAA, Congress was able to invest nearly $1 billion in federal resources through 2011 on biomedical and treatment research on autism. The law required the federal government to develop a strategic plan to expand and better coordinate the nation’s support for persons with autism and their families. Important research findings have resulted and critical studies are underway. Promising new interventions are making a difference in our children’s lives. For more CAA success stories, click here.
The CARA bill is sponsored in the Senate (S.1094) by Senators Robert Menendez (D-NJ) and Michael Enzi (R-WY,) and in the U.S. House of Representatives (HR.2005) by Congressmen Chris Smith (R-NJ) and Mike Doyle (D-PA.) CARA would continue the work started under the CAA for another three years and authorize Congress to dedicate another $693 million exclusively to autism research and treatment. To date, 23 other Senators and 61 House members have signed on as cosponsors, and President Obama has promised to sign a reauthorization bill this year.
Visit our CARA Action Center to find if your Senators and Representative are cosponsors. If they are not cosponsors, find out how you can get them to sign on.
Since the original Combating Autism Act was approved in 2006 with near-unanimous support in Congress and signed into law by then President George W. Bush, the prevalence of autism spectrum disorders (ASDs) has risen to 1 in 110 American children – including 1 in 70 boys. An estimated 1.5 million individuals in the U.S. are affected by autism, and government statistics suggest the prevalence rate is increasing 10-17 percent annually. America clearly must step up its response to autism. The responsibility lies with Congress and the answer is passing CARA.