According to the Center for Disease Control (CDC) in 2010, autism spectrum disorder (ASD) affected approximately one out of every 68 children, a 119 percent increase from the 2000 prevalence data of one in 150 children. This increase has served to make federal and state legislators take action by introducing laws that allocate funds and establish resources for the education, health and social wellbeing of people affected by autism spectrum disorder (ASD).
Federal Laws Related to Autism
A number of federal laws exist that relate to ASD.
Children's Health Act
The 2000 Children's Health Act was established the National Center on Birth Defects and Developmental Disabilities at the CDC to address a variety of diseases and disorders related to childhood. With regard to autism, it directed the establishment of Centers of Excellence at both the CDC and the National Institutes of Health (NIH) that are responsible for collecting, analyzing, and reporting data relating to ASD. The funds allocated for these Centers have been used to:
- Provide grants for the collection, analysis, and reporting of data collected by both public and private, non-profit entities
- Establish a minimum of three Centers for Excellence across the nation that will also collect and disseminate autism data
- Create a clearinghouse to store and manage data in a central location
- Coordinate the federal response to requests for assistance from the individual state's health organizations
- Direct the flow of information available to health professionals and the public
Combating Autism Act/Autism CARES Act
In 2006, the Combating Autism Act was implemented to ensure almost $1 billion in funding over a five year period and to establish a federal advisory committee, the Interagency Autism Coordinating Committee (IACC). The committee is tasked with developing and updating a strategic plan that guides the research endeavors conducted by the Centers established under the 2006 Children's Health Act each year.
The Act was reauthorized for the first time in 2011 and set aside almost $700 million for autism research for use through 2014. In 2014, President Obama reauthorized the Combating Autism Act as the Autism CARES Act, which will govern the allocation of an additional $1.3 billion in funding through 2019.
Americans With Disabilities Act (ADA)
The Americans With Disabilities Act was signed into law in July of 1990. The ADA is an equal opportunity act that is intended to ensure that individuals with disabilities have the same access as people without disabilities to employment opportunities, community resources, and educational opportunities, and that they are free from discrimination of any kind.
People with autism are protected under the ADA, but as they mature to adulthood, some people with ASD may fall through the cracks with regard to qualifying for supported employment services or support for higher education. For example, adults with Asperger syndrome may find that they are not eligible for vocational rehabilitation services because they do not have two qualifying disabilities.
Many people with Asperger syndrome have high intellectual abilities, but poor social skills, so while they are able to do the necessary work, they may be unable to function in a socially appropriate way in a work environment without support and guidance. Vocational rehabilitation funding is so limited that the individuals who are more adversely affected by their autism may have a better opportunity to be employed because the funding would be allocated to meet their needs first.
The Individuals With Disabilities Education Act (IDEA)
The IDEA addresses the specific educational needs of children from ages 3 to 21. The Act ensures that all children, regardless of disability status, are entitled to a free and appropriate education in the least restrictive environment possible. It is this Act that has allowed children with disabilities, including autism, to be educated in mainstream classrooms, and it has also provided the guidelines and mandates for education professionals to provide needed supports so that students with disabilities can be successful in regular education settings. Those supports are outlined in an Individual Education Plan, which evaluates each child's strengths and limitations. This evaluation forms the basis for the decisions regarding the appropriate supports.
Despite all the protections afforded under the IDEA, there have still been numerous lawsuits brought about by parents of children with ASD because their school system has failed to meet the stipulations specified under the Act. These suits often come about because the phrase "least restrictive environment" has been interpreted differently by various institutions, and some schools continued to educate children with ASD in segregated classrooms when it was unnecessary to do so.
The Able Act
The Able Act provides families with the opportunity to establish tax-free savings accounts that can be used to help with expenses related to disability services. This may be helpful to families with an autistic family member if they have been determined to be permanently disabled and/or are receiving Supplemental Security Income (SSI) or Social Security Disability Insurance (SSDI). This program is similar to the education 529 plan that allows families to save tax-free dollars toward their child's education. In addition to these funds being tax-exempt, the savings may not be considered in the eligibility criteria for federal means-tested benefits.
Providing support for family members affected by autism can be challenging across a number of domains. Costs for taking care of their social, educational, and emotional needs can range from $1.4 to $2.4 million over their lifetimes. Fortunately, there are numerous organizations that are committed to changing laws and policies so adequate financial support is provided for these individuals and their loved ones.
State Disability and Autism Laws
Each state may have its own laws and mandates regarding the rights of children and adults with disabilities. When the state laws enhance the mandates of the ADA and the IDEA, then state laws take precedence. However, if the state mandate is in conflict with the rights afforded under the federal Acts, then parents and family members have the right to make sure their loved ones are served under the federal directives.
The Use of Seclusion and Restraint
Some of the most controversial mandates that fall under state governance are those that deal with the use of restraints and seclusion in the schools. Restraints and seclusion are intended to keep everyone safe in the event of challenging behaviors; they should never be used as a punishment. It can be dangerous to restrain anyone, but children with medical conditions are at even greater risk. Parents of all children, particularly those with disabilities, have to the right to know if and when these practices are used. According to the Autism Society, there are 25 states that do not require that parents of children with disabilities be notified of the use of a restraint or seclusion within 24 hours.
In 2009, U. S. Congressmen George Miller introduced the Keeping All Students Safe Act that many states have since adopted. This has improved the situation somewhat, but there are still a number of states that have not yet adopted the federal mandate. Virginia is the most recent state to adopt the federal policy.
Insurance Laws Specific to Autism
Insurance coverage for people with autism has been a hotly debated topic for a number of years. Many services required by those affected by autism have traditionally not been covered under many health plans. Some policymakers believe that autism services should be provided through educational programs, others believe they should be covered under medical services, and still others believe that autism is a behavioral condition that should be covered under mental health plans. The fact that medical professionals do not know what causes autism contributes to this confusion. Only recently has insurance coverage has been mandated for services related to autism, either by state or federal policy makers.
- According to Autism Speaks, 41 states to date have adopted legislature that mandates insurance coverage for at least some of the services that people with autism require. However, many still do not pay for one of the primary treatment modalities, applied behavior analysis (ABA), because it is either considered experimental or educational.
- Indiana was the first state to require insurance coverage for pervasive developmental disorders, which includes autism spectrum disorder. The statute mandates that coverage for developmental disorders can't require the insured to pay more in deductibles or coinsurance than for any other medical condition. Coverage is limited to that prescribed by a physician as part of a treatment plan.
- Delaware requires their insurers to cover a comprehensive range of services, including behavioral health treatment, pharmacy care, psychiatric care, psychological care, and therapeutic care. Their statute covers applied behavior analysis as well; however, they only provide coverage for individuals 21 years-of-age and younger.
- Maryland, on the other hand, provides very limited coverage for individuals 19 and younger. They cover only habilitative services, such as speech and language therapy.
- In 2014, Ohio legislators voted to include ABA coverage for its youth, with a maximum of 20 hours of behavioral services per week.
On the Horizon
Currently, there is one piece of legislation pending for people with ASD.
Avonte's Law Act of 2015
Avonte's law is a proposal that is intended to reduce the risk of injury and death related to wandering behavior in people with autism and other disabilities. About 49 percent of children with autism leave a safe supervised area, and some have tragically died as a result. This law is named for a 14-year- old boy who lost his life when he wandered away from his school in Queens in 2014. If passed, the law would allocate funds to provide training and technology to law enforcement officials, first responders, educators, parents, and the general public, including:
- Training to facilitate effective communication with people with communication disorders
- Establishing emergency protocols for caregivers and school officials
- Supplying tracking devices and other technology to aid first responders, law officers, and parents in locating their loved ones quickly
- Educating officials in recognizing signs of abuse
- Providing personal safety training and education to individuals affected by a disability
Laws regarding the care and education of those with autism have certainly come a long way in the last few decades. For people managing autism or other disabilities, there are a tremendous number of resources available, and they are growing all the time. The best way to ensure that the rights of people with ASD continue to be upheld is to get involved. There are numerous local, state, and federal organizations that provide people with autism with a strong and active voice.