This guest post is by Carrie Masur Gillispie. She is a Government Relations intern at Autism Speaks with a Master of Education in school psychology.
The Interagency Autism Coordinating Committee (IACC) Services Subcommittee held a workshop on November 8th called “Building a Seamless System of Quality Services & Supports Across the Lifespan,” in Rockville, Maryland (view the agenda here). The all-day event focused on policy issues related to the system of services and supports for people with autism spectrum disorders and their families. The workshop was open to the public, and several community members attended the event including parents, educators, medical professionals, and researchers.
Nancy Thaler of the National Association of State Directors of Developmental Disabilities Services, Bill East of the National Association of State Directors of Special Education, and K. Charlie Lakin of the University of Minnesota painted a picture of the current state of autism services. They noted that while services have come a long way over the past few years, families still need help with accessing service providers and support agencies who can meet their unique needs. They also noted concerns about the increasing demand for autism services due to increased prevalence and the fiscal challenges many states are facing in funding these services.
Self-direction care programs give people with autism more power over deciding how to use public funds to fit their individual needs. Several states have secured federal waivers that give individuals with autism a budget, and the authority to choose how to spend that money among a selection of services and supports. They can tailor a combination of providers to best support their needs. These programs are sometimes referred to as “Cash and Counsel.” Michael Head of the Michigan Department of Community Health and James Conroy of the Center for Outcome Analysis discussed how to implement and evaluate these programs.
There are many different types of services and supports out there, and there is no one-size-fits-all combination to suit the unique needs of each person with autism. Donald Clintsman from the Washington State Department of Social and Health Services emphasized that it is important to cater those services according to each person’s needs. He presented a standardized way to assess each person’s needs in order to deliver the most appropriate services possible.
The training of professionals who work with people with autism was a key topic for three speakers. Kevin Ann Huckshorn from Delaware Health and Social Services presented training strategies to prevent and reduce the use of seclusion and restraint. Her model emphasized preventing conflict escalation and encouraging positive support. Carrie Blakeway of The Lewin Group and Erika Robbins from the Office of Ohio Health Plans highlighted issues surrounding hiring, educating, and supporting those who work with people with autism.
Sheldon Wheeler from the Maine Department of Health and Human Services presented examples of innovative strategies to give adults with autism better housing options such as individualized housing, homeownership, positive social environments, and housing modifications. Lisa Crabtree of Towson University and Julie LaBerge of the Bonduel School District in Wisconsin described peer support programs creating positive relationships and raising autism awareness in their schools. Jim Sinclair, co-founder and coordinator of the Autism Network International, described the advantages of people with autism providing peer support for others with autism.
Highlighting the need for streamlining the many service agencies within each state, John Martin from the Ohio Department of Developmental Disabilities discussed strategies for integrating government systems that provide autism-related services.
The subcommittee, as well as members of the IACC, had the opportunity to ask speakers questions about the most effective ways to build a more efficient system of services and supports. It was an information-packed day that fostered interesting discussions and several recommendations for achieving this important goal. Links to the speakers’ presentations are expected to be posted on the IACC website next week.
This Government Relations post is by Lorri Unumb, Senior Policy Advisor and Counsel for Autism Speaks and Summit Organizer.
“People who work together will win, whether it be against a complex football defense, or the problems of modern society.” ~ Vince Lombardi
Spoken by Vince Lombardi, the words above have never been more true than during the past three years of work by the autism community to achieve autism insurance reform in twenty-three states. As the community plans and prepares for another legislative season in the fight for reform in all 50 states, volunteer advocates from twenty-six states gathered in Washington, D.C. last weekend for the 5th Annual Autism Law Summit.
This event, which was co-sponsored by Autism Speaks and the Virginia Autism Project, brought together sixty-plus parents, providers, researchers, lawyers, lobbyists, legislators, and other interested professionals pursuing autism insurance reform legislation to learn from one another and share strategies for success. Conversations included not only advice on how to pass autism insurance legislation, but also discussions on implementation in the 23 states where reform bills have already passed.
Attendees at the summit came from Arizona, Arkansas, California, Connecticut, Delaware, Florida, Georgia, Iowa, Kansas, Louisiana, Maryland, Massachusetts, Michigan, Minnesota, Missouri, Montana, New Jersey, New Mexico, New York, North Carolina, Oregon, Pennsylvania, South Carolina, Vermont, Virginia, and Washington, DC.
Special guest speaker, Kansas State Senator Tim Owens, who championed a successful autism insurance reform bill in the Kansas legislature in 2010, spoke to the attendees on Friday about working with legislators. Senator Owens, himself a grandfather of two children on the spectrum, fought long and hard to bring about meaningful reform in his state. While Kansas is a green state on the Autism Speaks State Initiative Map, indicating that reform has been enacted, Senator Owens shared that he will not rest until all children in Kansas have access to insurance coverage for autism therapies.
Friday night brought one of the event highlights: a mock legislative committee hearing in the formal moot court room at the George Washington University Law School, where the Summit was held. Professor Greg Maggs, who is interim dean of the law school, welcomed participants to the GW community on Friday.
While the focus of the session on Friday was the passage of autism insurance reform laws, with nearly half the country having already enacted this legislation, the focus of Saturday’s session was a discussion of the implementation and enforcement of the laws. Saturday morning’s implementation panel was packed with great information for families and providers who are learning to access new insurance benefits. The panel was led by Dr. Gina Green, Executive Director of the Association of Professional Behavior Analysts, and featured lessons learned by providers from three of the earliest states to pass autism insurance reform: Susan Butler from the Early Autism Project in South Carolina; Dr. Billy Edwards from Behavioral Innovations in Texas; and Dr. Bryan Davey from ACCEL in Arizona.
Other Saturday highlights included:
- David Meador, the Chief Financial Officer of DTE Energy, discussing self-funded companies who voluntarily adopt an autism benefit, much as DTE Energy has recently done.
- Dan Unumb, attorney, providing an update on autism-related litigation, which is rapidly increasing in volume and scope.
- Lisa McHenry, the parent-plaintiff from Oregon who successfully sued her health plan for failure to cover her son’s ABA therapy.
- Dr. Jerry Shook, CEO of the Behavior Analyst Certification Board, discussing trends in training and credentialing of behavior analysts.
“That was a great conference,” said conference attendee Chris Supple from Massachusetts. “I really enjoyed it, learned a great deal, and brought home some great resource material.”
This post is written by Peter Bell, executive vice president for programs and services for Autism Speaks. He oversees the foundation’s government relations and family services activities and also serves as an advisor to the science division. Peter and his family reside in New Jersey, his oldest son Tyler has autism.
At Autism Speaks, our goal is to change the future for all who struggle with autism spectrum disorders. To accomplish this mission, we have devoted much of our advocacy efforts over the last several years to ending the routine discrimination against people with autism by health insurers. To date, twenty-three states have enacted legislation requiring health plans to cover medically necessary, evidence-based autism treatments. Currently, the State of New York sits on the brink of passing what could become one of the most comprehensive state laws passed thus far.
For several years, families, legislators and advocacy organizations in New York have been working diligently towards the passage of meaningful autism insurance reform legislation. S7000B is the product of this mutual effort. Passed unanimously by both the New York Assembly and the New York Senate, this legislation would at long last require coverage of evidence-based treatments like speech therapy, occupational therapy, physical therapy and applied behavior analysis. S7000B also insures that coverage for behavioral therapy cannot be denied because it is deemed educational or habilitative in nature. Just as important, the bill has no annual monetary coverage limitations or limits based upon age. It also contains provisions to ensure that existing services covered under health insurance as well as services provided through an individualized family service plan, an individual education plan or an individualized service plan are continued.
If you don’t live in New York, you may be wondering what this legislation has to do with you. Although this bill originates in New York, advocacy from stakeholders all across the country is critical. Here’s why:
If you happen to live in one of the twenty-three states that have enacted an autism insurance bill, then you know the impact this legislation can have on the families that now or soon will benefit. They will no longer need to worry about using all their financial resources to pay for evidence-based therapies that their children with autism need.
If you live in one of the twenty-six states that have not yet passed autism insurance reform, then you know the heartbreak a family faces when they receive denial after denial from their insurance company for treatments their child needs to live a full life, join their peers in school, and interact with their siblings. And, if you have a health plan that is not covered by state law (if, for example, your employer has a self-funded or ERISA plan), then your help is needed most of all. Enactment of autism insurance reform in New York will mean that our community is one step closer to being able to make the case for reform at the federal level. Federal autism insurance reform will ensure that every family in America will get the insurance coverage for autism therapies that they need and deserve.
At the end of the day, it all comes down to ending the discrimination families living with the challenges of autism face when dealing with health plans. As one New York father pointed out to me recently, individuals with autism are simply looking for equality. He went on to emphasize how this piece of legislation would require coverage for evidenced based treatments, equality in its truest sense. He spoke from an extremely personal place, sharing how last year he was diagnosed with Non-Hodgkin’s Lymphoma. His course of treatment, which was evidence-based, was covered by his health insurance and because of this treatment, he is doing well. He went on to ask the obvious question: why his beautiful nine year-old son with autism was not afforded the same opportunity?
It’s time for this discrimination to stop. You can help by emailing Governor David Paterson and urging him to sign S.7000B into law. He needs to hear from you – as a member of the nationwide community of families and loved ones of individuals with autism – even if you do not live in New York. Please take two minutes to make a difference today.
Please help us today in New York to create a better tomorrow for families in all states. Thank you.
By Mike Wasmer, Autism Speaks Kansas Chapter Advocacy Chair. Mike is the parent of two fantastic kids. Although a veterinarian by trade, he became active in autism advocacy and founded the Kansas Coalition for Autism Legislation (KCAL) after his daughter was diagnosed with autism in 2001. KCAL (www.kscoalitionforautism.org) is a volunteer group of parents, medical professionals and service providers who are dedicated to advocating for legislation to benefit the autism community in Kansas and nationally. In 2010, Kansas became the 18th state to enact an autism health insurance reform bill.
I am excited about Autism Votes’ recent introduction of the Autism Votes mobile text alert campaign. By texting “AVotes” to 30644, advocates will receive action alerts to support autism-related state and federal legislation directly to their mobile phone. This tool is exactly what we need to mobilize the autism community before the opposition tries to pull a fast one on us.
Let me tell you why Autism Votes mobile is important….
In 2009, the Kansas autism insurance reform bill was stalled and time was running out for us. Opponents of our bill had mounted a strike, pressuring our supporters to vote the bill down. We had just two hours to rally our grassroots, contact key legislators, gain the votes we needed, and get the Kansas House to pass our bill, which would require health insurance companies to provide coverage of medically necessary, evidence-based autism therapies.
With the help of our friends at Autism Speaks we dug into our grassroots. We made countless phone calls, sent thousands of e-mails, and posted updates on Twitter and Facebook asking advocates to contact their legislators.
Despite our best efforts, the motion to advance our bill failed by just 10 votes.
I learned several important lessons about politics and grassroots advocacy that session. First, Shelley Hendrix is a wise woman, so listen to her when she tells you, “The political process is a roller coaster. So kids, you’d better buckle up and keep your arms and legs inside the car because it’s going to be a crazy ride.” Secondly, there is a huge difference between growing your grassroots and effectively mobilizing your grassroots. Despite all of our calls, e-mails, and social network posts, when we needed a rapid response from the troops, we had to find a way to get the word out quickly and get advocates to take action immediately.
The Kansas bill was eventually signed into law this past April, becoming the 18th state to enact autism insurance reform. However, the new law is limited in its reach and until every person with autism in Kansas has meaningful access to the treatments and therapies they need, our work here is not yet done. With the new Autism Votes mobile text alert program, we will be stronger and quicker for the 2011 legislative session. We will be able to build on the 2010 law and expand coverage to all who need it.
I encourage you to sign up for Autism Votes mobile by texting “AVotes” to 30644 today and help your state achieve autism insurance reform!
This is a guest post by Lorri Unumb, Autism Speaks senior policy adviser and counsel. Lorri also teaches “Autism and the Law” at the George Washington University Law School.
Autism is a hot topic for discussion at various types of conferences these days, from epidemiologists to economists to educators. You still, however, don’t often see autism on the agenda at legal conferences. That’s why I was so excited over the summer to have the opportunity to speak about autism legal issues at a national conference of legal aid attorneys and encouraged by the keen interest demonstrated by the lawyers in attendance.
Every state in the nation has at least one legal aid organization, which provides legal services to the poor, and a protection and advocacy organization, which provides legal services for the disabled. Lawyers who work at these organizations, as well as public defenders (who work in the criminal arena), are typically members of the National Legal Aid & Defenders Association (NLADA). As set forth in its website (www.nlada.org) NLADA champions effective legal assistance for people who cannot afford counsel, serves as a collective voice for both the civil legal aid and public defense communities throughout the nation, and provides a wide range of services and benefits to its individual and organizational members. Founded in 1911, NLADA is the oldest and largest national, nonprofit membership organization devoting all of its resources to promoting justice for all in the United States.
Among its activities, the NLADA holds national conferences and trainings for public interest lawyers. My husband, Dan Unumb, who is Director of Litigation at South Carolina’s legal aid organization, proposed trainings on “Representing Families with Autism” for two of NLADA’s summer conferences held jointly in July in Chicago. NLADA enthusiastically accepted and supported the proposal.
The first workshop was presented as part of the Litigation and Advocacy Directors Conference, which is designed for experienced litigation and advocacy directors to assist them in identifying, promoting, and pursuing cutting-edge legal issues in their programs. A panel of five legal experts educated the attorneys on autism legal issues ranging from health insurance to special education to Medicaid. Presenting attorneys included Sue Tobin of Ohio Legal Rights Service and Sarah Somers of National Health Law Project on Medicaid issues, Tracey Spencer Walsh of Mayerson & Associates on special education law, and Dan and me on health insurance and other autism-related issues.
The second workshop was geared to front-line legal aid attorneys who handle day-to-day representation of low-income or disabled clients. At this workshop, Dan and I were joined by Kirby Mitchell, Managing Attorney of one of South Carolina Legal Services’ largest offices, to present a broad overview of legal issues surrounding autism including health insurance, special education, Medicaid and life-planning issues such as guardianship, conservatorships, custody and child support, hospital collection defense cases, bankruptcy, Medicaid trusts, tax planning, and Social Security disability actions.
The range of legal issues a family affected by autism may face is vast, and the need for lawyers, judges, and judicial staff to be educated on them is equally great. This outreach is critical to improving legal representation, judicial decisions, and the overall response of the legal system to the complex challenges posed by autism. This summer’s presentation was a good step in the right direction, and Autism Speaks is committed to making further inroads toward ensuring effective legal representation of families with autism.
This post is by Sharon Boyd, the Advocacy Relations Coordinator for Autism Speaks.
“Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it’s the only thing that ever has” – Margaret Mead
I read Margaret Mead’s words for the first time shortly after my son, Austin, was diagnosed with autism. At the time I didn’t realize just how much her words would become a part of my future.
Like many children with autism, Austin was denied insurance coverage for his autism treatments. No matter how hard I tried, without private insurance coverage, I could not get my son the treatments his physicians prescribed. I finally quit my job as an RN to lower my income, so that we could qualify for Medicaid and provide him with access to speech therapy. It was obvious to anyone that big policy changes were needed if our kids with autism were going to get the care they needed.
The more I networked with other families throughout my state, the more I realized there must be strength in numbers. We needed to unite our voices. We needed to become that “small group of thoughtful, committed citizens” that Margaret Mead spoke about in order to get our legislators to listen and “change the world” for our children with autism.
When the autism community uses one voice, our legislators listen. They hear us loud and clear, with one booming voice and they too become committed to the policy changes our families so desperately need. This is what happened in my state of Florida when we finally passed our autism insurance reform bill in 2008. It is what has happened in 22 other states across the country that has passed meaningful autism insurance reform laws. And it is what happened when the autism community came together to pass the Combating Autism Act in 2006. Strength in numbers.
Autism Speaks holds walks across the country that raise funds for autism research. But these walks serve another purpose as well. Every walk has an advocacy booth that is part of the Autism Votes initiative. This fall the volunteers at the Autism Votes booth at every walk will be there to provide you with information on the important pieces of pending autism-related federal legislation, such as the ABLE Act, which seeks to allow families of a child with a disability to save money, tax-free, for future needs as an adult. Most importantly, at the Autism Votes booths this Fall, you will have the chance to sign a petition in support of the ABLE Act, and/or other autism-related federal and state legislation. Your signature on this petition will join with the hundreds of others collected at your walk and, acting as a united message from a united voice, will go directly to the legislators who can bring about the changes our families need.
So, be sure to stop by the Autism Votes booth when you attend an Autism Speaks walk this fall. You can’t miss it…it’s the only booth with red, white and blue streamers, balloons and other patriotic decorations! Or find one of the Autism Votes volunteers with a clipboard that will likely be walking through the crowd asking for signatures.
Signing a petition at the Autism Votes booth will take you just one minute. Just one minute of your time to become part of a united voice in the autism community. A simple minute to become that committed citizen and change the world for your child or a child you know with autism.