Federal Screening Initiative

From HHS's Administration for Children and Families:

Birth to 5: Watch Me Thrive! is a coordinated federal effort to encourage healthy child development, universal developmental and behavioral screening for children, and support for the families and providers who care for them.

Birth to 5: Watch Me Thrive! will help families and providers:

• Celebrate milestones. Every family looks forward to seeing a child’s first smile, first step, and first words. Regular screenings help raise awareness of a child’s development, making it easier to expect and celebrate developmental milestones.
• Promote universal screening. Just like hearing and vision screenings assure that children can hear and see clearly, developmental and behavioral screenings track a child’s progress in areas such as language, social, or motor development.
• Identify possible delays and concerns early. With regular screenings, families, teachers, and other professionals can assure that young children get the services and supports they need, as early as possible to help them thrive alongside their peers.
• Enhance developmental supports. Combining the love and knowledge families have of their children with tools, guidance, and tips recommended by experts can make the most of the developmental support children receive.

The Need for Action on Wandering

Lori McIlwain, executive director of the National Autism Association, writes in The New York Times about her own son's wandering.

Today, the National Autism Association, where I work, provides information and resources for caregivers. Back then, there were no fact sheets to support our pleas for greater vigilance. And, to this day, there is no guidance from the Department of Education; no protocols, not even a mandate to notify parents of any wandering attempts. At the N.A.A., we often hear from parents who have a child who cannot sleep, forcing caregivers to barricade doors and take shifts staying awake. Others are so desperate that they hide their child’s shoes to slow them down in case they escape.

Under federal criteria, which most states follow, the Amber Alert system [see story on Silver Alert]  can be used only for children known to have been abducted. Wandering doesn’t count. Instead, the refrain most often thrown at parents is simply “watch your child better,” or “find a school that will watch your child better.”

Imagine if that were the advice given to those who care for Alzheimer’s patients. In fact, the Department of Justice provides about $1 million a year for first-responder training on Alzheimer’s-related wandering and tracking technology. There is no equivalent funding for autism-specific wandering and no more than a promise, in 2011, from Kathleen Sebelius, the secretary of health and human services, to give the issue “serious consideration.”

Autism and the Final ACA Rules

A Thursday release from Autism Speaks:

The expanded access to health care promised through the Affordable Care Act (ACA) would fall short with autism under new federal regulations that fail to require every state to include coverage for behavioral health treatment as the law required, said Peter Bell, Autism Speaks' executive vice president for programs and services. Autism is the fastest growing developmental disability in the United States with an estimated 1 of every 88 children now diagnosed with an autism spectrum disorder.

Bell was responding to final rules made public yesterday by the U.S. Department of Health and Human Services (HHS) regarding the 10 "essential health benefits" every state must include in their new ACA health insurance marketplaces that start operation next year. Even though coverage for behavioral health treatment, including applied behavior analysis (ABA), was required by Congress, as many as 24 states continue to lack this coverage under the HHS regulations.

Among these states are Pennsylvania, Florida and Virginia which require the coverage by law for state-regulated health plans, but would not require it through their new ACA health plans. A total of 32 states have passed autism insurance reform laws requiring autism-related coverage in state-regulated health plans.

“Behavioral health treatment, including ABA, was specifically written into the law by Congress as an essential health benefit, yet that requirement seems to have disappeared from the new HHS regulations," said Bell. "On the other hand, we are encouraged that the flexible approach HHS has adopted could ultimately lead to more states including behavior treatment benefits for autism.

"The habilitative services category may offer a fallback. States that do not have an ABA benefit should step up – now – and determine that this vital coverage is part of their benchmark plan.” 

For instance, Ohio, which is not one of the 32 states to enact an autism insurance reform law, will be permitted to require the coverage in its ACA health insurance marketplace under an order signed in December by Gov. John Kasich. California, New York, Michigan, Delaware and Alaska, all of which passed their state laws after the ACA was enacted, also will be permitted to include behavioral health treatment in their ACA health plans.

Petition to Sebelius

Previous posts have discussed regulations implementing the Affordable Care Act. From the Center for Autism and Related Disorders:

Autism parents, experts and activists, encourage everyone to sign the petition asking Secretary Kathleen Sebelius to clarify the essential health benefits to include ABA for Autism! This small clarification can open a world of possibilities for children with Autism. Learn how you can make your own infinity ribbon to tell the world that with ABA, the possibilities are infinite!

Sign the petition here: http://chn.ge/Rs7omC

Autism Awareness Month Conference at the White House

Senior Adviser to the President Valerie Jarrett and Secretary of Health and Human Services Kathleen Sebelius spoke to an audience of parents, advocates, and experts at an Autism Awareness Month Conference at the White House. Jarrett spoke of her early involvement with autism as a student at Stanford:

A blog post by Secretary Sebelius:

Helping every American with autism achieve their full potential is one of this administration’s top priorities. At the U.S. Department of Health and Human Services, we continue to strive to meet the complex needs of all people with Autism Spectrum Disorders (ASD) and their families. While there is no cure, early intervention is critical and can greatly improve a child’s development.

Perhaps the biggest step we’ve taken to support those affected by autism and their families happened over a year ago, with the signing of the Affordable Care Act. Now, new insurance plans are required to cover autism screening and developmental assessments for children at no cost to parents. Insurers will also no longer be allowed to deny children coverage for a pre-existing condition such as ASD or to set arbitrary lifetime or annual limits on benefits.

Also, thanks to the new law, young adults are allowed to stay on their family health insurance until they turn 26. For a young adult with autism spectrum disorder and their family, that means peace of mind. It means more flexibility, more options, and more opportunity to reach their full potential.

Ultimately, there is more support for Americans with autism than ever before. This means more promise of new breakthroughs that will help us understand autism even better. But in order to continue meeting the needs of people with autism, the Combating Autism Act must be fully reauthorized. We still have a long way to go. Working collaboratively with important partners, the Affordable Care Act and the Combating Autism Act will allow us to continue important research and develop and refine vital treatments.

There are still many unknowns. However, one thing is certain. We will continue to work harder than ever to find solutions and provide support to individuals with ASD and their families. Together, we can help reduce disparities and allow everyone to actualize their greatest potential.