Autism spectrum disorders: Policy Analysis

1. Autism spectrum disorders: Policy Analysis Presented by: Maritza Moreno

2. Problem statement • What laws Should President Obama implement to help people with autism have a better quality of life?

3. Autism Facts • ASDs occur in all racial, ethnic, and socioeconomic groups, but are four times more likely to occur in boys than in girls. • CDC estimates that between about 1 in 80 and 1 in 240, with an average of 1 in 110, children in the United States have an ASD. • More people than ever before are being diagnosed with an ASD. It is unclear exactly how much of this increase is due to a broader definition of ASDs and better efforts in diagnosis.

4. Background • Autism spectrum disorders (ASDs) are a group of developmental disabilities that can cause significant social, communication and behavioral challenges.  • People with ASDs share some similar symptoms, such as problems with social interaction.  But there are differences in when the symptoms start, how severe they are, and the exact nature of the symptoms. 

5. Background (symptoms) A person with an ASD might: • Not respond to their name by 12 months • Not point at objects to show interest (point at an airplane flying over) by 14 months • Not play "pretend" games (pretend to "feed" a doll) by 18 months • Avoid eye contact and want to be alone • Have trouble understanding other people's feelings or talking about their own feelings • Have delayed speech and language skills • Repeat words or phrases over and over (echolalia) • Give unrelated answers to questions • Get upset by minor changes • Have obsessive interests • Flap their hands, rock their body, or spin in circles • Have unusual reactions to the way things sound, smell, taste, look, or feel

6. Background (treatment) • An early, intensive, appropriate treatment program will greatly improve the outlook for most young children with autism. Most programs will build on the interests of the child in a highly structured schedule of constructive activities. Visual aids are often helpful. • Treatment is most successful when it is geared toward the child's particular needs. An experienced specialist or team should design the program for the individual child. A variety of therapies are available, including: • Applied behavior analysis (ABA) • Medications • Occupational therapy • Physical therapy • Speech-language therapy • Sensory integration and vision therapy are also common, but there is little research supporting their effectiveness. The best treatment plan may use a combination of techniques.

7. Landscape: Indentified Key stakeholders Legislative Stakeholders • Barack Obama (federal), Democrat ,President of The United States of America • According to the new president's website. Obama called for: • 1. Increased funding for research, treatment, screenings, public awareness and support services for autism spectrum disorders. • 2. "Life-long services" for people with autism spectrum disorders, as children and as adults. Many parents struggle to find and pay for screening and treatments for their children, but there is even less coverage and capacity for adults with autism-based impairments • 3. More funding for the 2006 Combating Autism Act, as well as improving state and federal autism programs. • 4. Universal screening for all infants for autism disorders, as well as re-screening for all 2-year-olds. This is the biggie; children are currently screened only if parents or pediatricians voice a concern, so too many children aren't diagnosed until they enter elementary school. The earlier treatment starts, the more effective it is, and a national screening program would help reduce the number of kids falling through the cracks. It would also be a huge undertaking, at a time when both government and privately insured health care is foundering • Senator James A. DeLeo (state), Democrat, Illinois ,Senator 10th District • Helped pass Senate Bill 934, which contains provisions to require insurance carriers to provide coverage of evidence-based, medically necessary autism therapies. In many states, insurers explicitly exclude coverage of these therapies from policies, which places a significant financial burden on families seeking to provide their children with necessary services. • Mayor Richard Daily (local) • (no comments found)

8. Landscape: Indentified Key stakeholders Special Interest Group Stakeholders •  Autism Speaks At Autism Speaks (federal) • Our goal is to change the future for all who struggle with autism spectrum disorders. We are dedicated to funding global biomedical research into the causes, prevention, treatments, and cure for autism; to raising public awareness about autism and its effects on individuals, families, and society; and to bringing hope to all who deal with the hardships of this disorder. We are committed to raising the funds necessary to support these goals. Autism Speaks aims to bring the autism community together as one strong voice to urge the government and private sector to listen to our concerns and take action to address this urgent global health crisis. It is our firm belief that, working together, we will find the missing pieces of the puzzle. Autism Speaks. It's time to listen. • Autism Illinois As a local chapter of the Autism Society of America.(State) • Our mission, vision, and values are commonly shared. We are a local support group that disseminates information to you and our neighbors. We all remember what it was like when you first heard the diagnosis AUTISM. You are not alone in this, we are here to help and support you • Easter Seals Metropolitan Chicago 1001 West Roosevelt Road Chicago, IL 60608 (local) • In response to our communities, Easter Seals Metropolitan Chicago provides comprehensive services for individuals with disabilities or other special needs and their families to improve quality of life and maximize independence.

9. Landscape: Identified Key factors Political- • What is the prevalence of autism? • Is there a reason to delay legislative action to enact a protective law? • Is there bipartisan support between both Democrats and Republicans on this issue? • Has autism become controversial? Social- • Who is affected by autism? • Are influential or valued people affected by this problem? Economic- • What is the economic impact of addressing and or not addressing autism? • Are resources for people with autism currently being offered and how are they funded? • Can the economic state of the United States afford to fund the law? Practical- • Is it realistic to try to solve this problem? • Would it be more practical to solve this problem later? Legal- • Are there legal restriction affecting this problem? • Is new legislative authority necessary to solve the problem?

10. What is being done? In April 2009, the Autism Treatment Acceleration Act, S. 819, was introduced in the Senate by Senator Richard Durbin (D-IL), Senator Robert Casey (D-PA) and Senator Robert Menendez (D-NJ). In the House, Representatives Mike Doyle (D-PA), Chris Smith (D-NJ), Eliot Engel (D-NY), and Hank Johnson (D-GA) introduced H.R. 2413 on May 14. Both bills are to “provide for enhanced treatment, support, services, and research for individuals with autism spectrum disorders and their families,” and have been referred to committee.

11. Autism Treatment Acceleration Act The Autism Treatment Acceleration Act can make a huge difference in the lives of individuals on the autism spectrum throughout their lives. The legislation not only calls for calling for insurance companies to provide coverage for diagnosis and treatment; it also calls for:  • the establishment of an Autism Care Center Program to “provide grants and other assistance to improve the effectiveness and efficiency in providing comprehensive care to individuals diagnosed with autism spectrum disorders and their families” • planning and demonstration grants for services for adults • anational registry for autism spectrum disorders (a topic that evokes more than a few concerns) •  a multimedia campaign about autism (hopefully providing real information rather than further bolstering myths about autism) • the establishment of an Interdepartmental Autism Coordinating Committee to “coordinate all Federal efforts concerning autism spectrum disorders"  • the establishment of a national network to coordinate research and science on autism • national training initiatives on autism spectrum disorders.

12. What can we do? • This session of Congress should act to pass S. 819 and H.R. 2413. Please contact your US Senator and US Representative and ask him or her to co-sponsor the bill.

13. Resources: • http://www.govtrack.us/congress/bill.xpd?bill=s111-819&tab=summary • http://www.autismspeaks.org/treatment/index.php • https://health.google.com/health/ref/Autism • https://cdc.gov/autism