Combating Autism Act Update - Action Alert

[Guest guest]

Dear Friend of ASO:

A message from the ASA regarding the Combating Autism Act:

"Many thanks to all of your for your continued outreach on the CombatingAutism Act. As you know, S. 843 passed the Senate on August 3rd, and theHouse version of the bill, HR 2421, has 227 bipartisan cosponsors -- morethan half of the House of Representatives. The fastest way for this bill tobecome law, however, is for the House to pass the Senate version of thebill. Unfortunately, Chairman Barton has steadfastly refused to bring S.843 up for a vote. With the House of Representatives adjourned until afterelections, the only possibility for passage is for the House to vote on S.843 during the lame duck session. ASA will not give up the fight on this issue. We will push this bill allthe way until Christmas, if that's what it take to get it done. We will bereaching out to our friends and champions on the Hill, collaborating onstrategies to advance this legislation. We will continue to push theSpeaker, the Majority Leader, and others in the House and Committeeleadership to pass S. 843. We will make sure that these legislators knowthat autism is a priority that needs to be addressed. So what can you do? Arrange meetings with your Representatives now thatthey are home to campaign. Tell them about autism, what it means to you andyour family, and how important it is that we invest in additional autismrelated research. Share with them the ASA candidate briefing [following my signature] and find out where they stand on the issues. And make sure you vote on November 7th. The best way to make autism a priority is to elect Representatives who care about our issues.If you have any questions, please feel free to contact us."

Sincerely,

Barbara C. YavorcikPresidentAutism Society of Ohio701 S. Main St.Akron, OH 44311(330) 376-0211fax: (330) 376-1226email: askASO@...home: byavorcik@...web: www.autismohio.org-----------------------

Briefing Paper on Issues Affecting Individuals with AutismPrepared by the Autism Society of America Government Relations CommitteeAutism Spectrum DisordersAutism is a complex developmental disability that typically appears during the first three years of lifeand is the result of a neurological disorder that affects the normal functioning of the brain, impactingdevelopment in the areas of social interaction and communication skills. Both children and adults withautism typically show difficulties in verbal and non-verbal communication, social interactions, andsensory processing. Autism is one of several Autism Spectrum Disorders (ASDs) that also includeAsperger Syndrome and Pervasive Developmental Disorder, Not Otherwise Specified (PDD-NOS).One should keep in mind however, that as a spectrum disorder, it affects each individual differentlyand at varying degrees - this is why early diagnosis is so crucial.Once thought to be a rare disorder, the number of children diagnosed with an ASD has increaseddramatically over the last decade. The Centers for Disease Control and Prevention now estimates that1 in every 166 children is diagnosed with an autism spectrum disorder. This increase in the number ofchildren with autism has challenged early intervention and education systems, and community-basedservices systems do not have the capacity to serve the large numbers of individuals with autism turningage 21 and needing long-term services and supports.Increase in Children Diagnosed withAutism Ages 6-21

Costs of Autism to the NationAutism Spectrum Disorders (ASDs) have a major impact on the lives of millions of Americans andtheir families. These disorders also cost the American economy and American businesses tens ofbillions of dollars each and every year. Worse yet, there is a tremendous toll associated with notproviding meaningful resources for education, health, and community-based support systems: peopleSource: U.S. Dept. Of Education2with ASD cannot get the interventions and support they need to help them achieve the mostindependence possible.• The costs of ASDs are exceedingly high. A 2006 study from the Harvard School of PublicHealth found that it can cost up to $3.2 million to take care of a person with autism over his orher lifetime and caring for all people with autism over their lifetimes costs an estimated $35billion per year (Understanding Autism: From Basic Neuroscience to Treatment, 2006)).• It is estimated that the provision of intensive early intervention for young children with autismwould save the education system from $298,651 to $274,709 per child and from $1,686,061 to$2,816,535 for educational and human services for individuals with autism from ages 3 throughage 55. (Cost-benefit Estimates for Early Intensive Behavioral Intervention for Young Childrenwith Autism, 1998).• The number of students diagnosed as having autism and the cost of educating them isincreasing each year. While federal funding is available to help defray the costs of educatingspecial education students, states and local school district shoulder the bulk of the costs.Congress’ 1975 promise to provide 40% of special education costs has yet to have beenrealized.• Most health insurance companies do not cover the high costs of the therapies that have beenfound to be the most successful in treating children with autism, resulting in a lack of servicesfor children or cost-shifting to public health programs such as Medicaid.• It is estimated that individuals with autism have an unemployment rate of between 70% and90%.• Drowning is the most common reason for the accidental death of an individual with autism(Causes of death in autism, 2001)Key IssuesResearchThere are several autism related research activities underway at the National Institutes of Health (NIH).The centerpiece of the NIH’s research activities is the “Roadmap†for autism research, which wasdeveloped by the Interagency Autism Coordinating Committee. The Roadmap identifies severalpromising areas of research, including genetic and behavioral characterizations of the disorder, geneenvironmentinteractions, and screening and early diagnosis.Currently, the federal government invests approximately $100 million on autism research. While thisfunding level reflects an almost five-fold increase over the past decade -- from $22 million in FY1997to $100 million in FY 2006 -- it falls far short of addressing the myriad research needs of the autismcommunity. The Autism Society of America advocates for continued robust federal funding forbiomedical, behavioral, environmental, and epidemiological research conducted at and beyond the NIHand Centers for Disease Control and Prevention (CDC) that aims to: (1) establish the prevalence ofautism, (2) improve delivery of evidence-based treatment; (3) develop new treatments, interventions,3and supports; and (4) ensure rapid and effective dissemination and use of research to policymakers,health care providers, and the public.The Autism Society of America supports the vaccination of children against childhood diseases andrecognizes that vaccinations have saved millions of lives in the United States and throughout theworld. Although the Autism Society of America has not taken a position on whether thimerosal invaccines may be a cause of autism in some children, we do believe that more research is needed andsupport legislation that leads to safer vaccines for all children.Early InterventionThe National Research Council’s (NRC) Division of Behavioral and Social Sciences and Education formeda Committee on Educational Interventions for Children with Autism made up of nationally-renownedresearchers and practitioners for a variety of methodological approaches, which in 2001, published itsreport Educating Children with Autism. That report outlined evidence-based practices in the provision ofearly intervention services to young children with autism, including the provision of intensive earlyintervention services at a minimum of 25 hours per week.• Sadly, despite the consensus of experts in the field, families of young children with autismcontinue to struggle to receive intensive early intervention services that utilize research-basedmethodologies.• The reasons for this treatment gap include: (1) financial barriers, including underfunding ofearly intervention and education systems, (2) discriminatory provisions in both private andpublic health insurance plans that limit access to behavioral and other treatments, and (3)shortages of autism experts in many parts of the country.EducationStudents with autism have been the focus of more special education litigation than any othercategorical group of students (Ivanonne et al., 2003; Mandlawitz, M., 1997). From the early 1990s topresent day, legal proceedings have focused primarily on whether schools systems have provided“appropriate†education to children with autism, with attention to teaching methodology andplacement.Educating children with autism is a challenge for both parents and teachers. Each child with autism hasunique strengths and weaknesses, and if taught properly by trained teachers using evidence-basedpractices, they can develop to their full academic potential. Academic goals need to be tailored to eachindividual's ability and functioning level, and teachers need to know how to differentiate instruction,modify materials, and use positive behavior supports in order that students with autism succeed.There are several federal laws that protect children with autism, and their families, by ensuring thatstudents have individualized education plans that are tailored to their specific needs. Adequate fundingfor the Individuals with Disabilities Education Act (IDEA) and No Child Left Behind Act (NCLB) isneeded to ensure that their provisions and protections can be effectively implemented, monitored, andenforced. These laws are a critical underpinning for our public school system, but more can be done to4improve educational opportunities for students with autism, including The Teacher Education forAutistic Children (TEACH) Act. Among other things, the TEACH Act• Provides a loan forgiveness program for teachers of children with autism;• Addresses outreach efforts for underserved population on early screening and diagnosis;• Creates a Task Force to review standards for teachers of students with autism, studyeffectiveness of existing teaching models, and conduct an evaluation of state and localeducation agencies.• Requires a report on educational services provided to individuals with ASD under theIDEA and Head Start, and also asks for a special section on postsecondary, vocational,technical, and adult education programs in providing assistance to individuals with ASD.Health InsuranceEven though autism can be reliably diagnosed and treated, people too often do not get needed healthcare services, even when they have “good†insurance. Arbitrary, discriminatory insurance barriers toneeded mental and behavioral health treatment frequently stand in the way. Such barriers, which takethe form of denied services, stricter limits on treatment duration, and much higher out-of-pocket costsfor mental and behavioral health care than for other medical care, are commonplace. Lack of access tothese treatments takes a severe toll – in education, custody relinquishment, institutionalization,unemployment, and other health problems.Congress can end these discriminatory practices by passing a federal mandate on coverage of autismtreatment. Autism treatment coverage is fair, affordable, and will reduce the long-term costs ofservices and supports to individuals with autism. The Autism Society of America calls on Congress tomake enactment of autism treatment as a high priority. The Congressional Budget Office projected thatenactment of the pending mental health parity legislation would on average increase insurancepremiums by less than one percent. The number of individuals with autism is far fewer than thepopulation of individuals with mental illness (An estimated 26.2 percent of Americans ages 18 andolder — about one in four adults — suffer from a diagnosable mental disorder in a given year.). Aninsurance mandate for autism treatment would begin to curb the high costs to publicly-fundedprograms that treat and support children and adults with autism and vastly improve the lives ofindividuals with autism and their families.MedicaidThe President’s New Freedom Initiative was influenced by the Supreme Court’s decision in Olmsteadv. L.C. and E.W. (1999), which found that individuals with disabilities are protected under theAmericans with Disabilities Act and entitled to community-based services rather than institutionalcare. Yet despite Olmstead, a severe shortage of community-based services remains.Medicaid, over time, has evolved to become an important financing vehicle for a range of health andlong-term care services for children and adults with autism. Medicaid covers approximately 40 million5individuals, including children, older persons, people who have disabilities, and individuals who areeligible to receive federally assisted income maintenance payments.• Every state has implemented Medicaid payment for many of the community mental healthservices, including management of medications, necessary for individuals with autism. Theseservices are extremely vulnerable in times of tight budgets.• Every state has applied for and received a Home and Community-Based Services (HCBS)Waiver to serve individuals with a label of mental retardation, and most of these waivers coverindividuals with other developmental disabilities (i.e. autism, cerebral palsy). That said, anumber of states do not have Medicaid Waivers that provide services to individuals withautism, unless they also have a label of mental retardation.• There are an estimated 150,000 individuals with developmental disabilities on waiting lists forhome and community based services, including a growing number of individuals with autism.• Twenty-five percent of American children are enrolled in Medicaid and entitled to all necessarytreatment services under the Early and Periodic Screening, Diagnosis and Treatment (EPSDT)program. A 2001 Government Accountability Office (GAO) study found that comprehensivescreening rates are as low as 6 percent, severely restricting access to necessary services.• Under EPSDT, children have the right to medically necessary treatment "…to correct andameliorate defects and physical and mental conditions..." Despite this comprehensivedefinition of medically necessary services, in practice Medicaid does not typically pay forintensive behavioral and early intervention services for children with autism.• The Deficit Reduction Act of 2005, designed to save $5 billion in Medicaid expenses over 5years, made significant changes to the program including allowing cost-sharing for Medicaidservices, permiting states to remodel their Medicaid benefits in a way that would dramaticallyreduce access to services that are currently available, including services for children, anddenying federal matching funds for certain Medicaid Targeted Case Management (TCM)activities. It is critical that Congress ensure that these changes do not adversely affectMedicaid-eligible children and adults with autism.• Because the number of children with autism has grown so dramatically during the last decade,health and long-term care systems are not prepared to meet the needs of children and adultswith autism, Congress should enact legislation with funding for states for planning anddemonstration of community-based services for children and adults with autism.EmploymentEmployment is the lynchpin to all quality of life issues to adults with autism – not only ensuring accessto the basics of life, but lifting individuals out of poverty. Most people with autism of working ageremain unemployed or underemployed.The Autism Society of America believes that Congress should authorize targeted funding to increasethe capacity of vocational rehabilitation programs, one-stop centers, supported employment programs,and microenterprise programs to include and better serve individuals with autism. In addition,6Congress should reauthorize the Rehabilitation Act, expand transition authority for students withautism to better prepare them for meaningful and productive lives as adults, increase funding for theSupported Employment State Grants program to build the capacity of supported employment programsto serve individuals with autism, and eliminate remaining work disincentives for people with autismwho depend on Social Security disability programs.Disaster Preparedness/Response and AutismThe response to Hurricane Katrina highlights dramatically the limitations of our emergency responsesystem to meet the needs of individuals with autism – especially in natural and other disasters – and thefrequent failure to plan adequately for the impact of such occurrences. Katrina devastated an alreadyfrail system that was already failing children and adults with autism. The experience of this disasterunderscores that we must plan for – and have the means to address effectively – the impact of anydisaster on individuals with autism and other disabilities. That planning, and necessary resourcecommitments, must take many factors into account from the limited mission and capacity ofemergency shelter providers and the public health system to the ongoing services and supports neededby individuals with autism and their families.Other IssuesThe issues that affect individuals with autism are too many to be included in this briefing, howeverother issues that are vital are:• Passage of The Lifespan Respite Care Act which authorizes competitive grants to states to makequality respite available and accessible to family caregivers, regardless of age, disability, orfamily situation. Families caring for individuals with autism experience high levels of stressand require the occasional break from their caregiving duties.• Increase funding for housing for individuals with autism. The availability of affordablehousing is an enormous barrier to serving individuals with autism in their communities.• Substantially increase the resource limit for Supplemental Security Income (SSI) to the level itwould have been if indexed for inflation since its inception, and annually index the SSIresource limit for inflation. Each year, adults with autism receiving SSI fall farther intopoverty, affecting their health and well-being.A Final Word to CandidatesThe Autism Society of America and its chapters are eager to develop and work with candidates forCongress that wish to transform the nation’s service systems to better support individuals with autism.Through candidate education, we hope to improve candidates’ understanding of the needs ofindividuals with autism and their families and win their support for many crucial issues they wouldface as members of Congress. We thank you for your attention to these issues and look forward to along and productive collaboration.