Resources & Organizations for Individuals with ASD
There are thousands of organizations in the U.S. that are dedicated to supporting IWDs find their place in society as productive members, celebrated for their talents. Listed below is a professional analysis of available resources that are leading inclusion objectives.
federal agencies.
There are many branches of the federal government that provide valuable resources for and about individuals with disabilities. Most notably are the CDC, NIH, NINDS, HHS, SSA, ODEP and OFCCP. All of these agencies offer support and serve as model employers, as well as contribute to policy and practice reform (EARN, n.d.).
The CDC offers an extensive collection of resources for individuals, families and professionals interested in disabilities, such as ASD. The CDC offers official information on the signs, facts and prognosis of ASD, along with explanations of possible treatments (CDC, 2013). In addition, it offers news, articles and free materials. Materials such as parent guides, research resources and healthcare provider tool kits.
The National Institute of Health (NIH) offers detailed information through the National Institute of Neurological Disorders and Stroke (NINDS) about diagnosis, treatments and prognosis (NIH, 2013). In particular the website offers news, funding information and research updates about NIH contracted research organizations. The website also offers links to view relevant journal article titles and current clinical trials.
The U.S. Department of Health and Human Services (HHS) offers information similar to the aforementioned federal organizations, and includes more comprehensive information from external resources (HHS, n.d.). In addition, the HHS houses the Interagency Autism Coordinating Committee (IACC), a Federal advisory committee mandated by Congress that advises and coordinates HHS activity related to ASD (IACC, 2014).
The SSA provides resources that relate to the policies and procedures around the disabilities. In particular, the SSA mandates the work incentive policy for people with disabilities who want to work but still receive their Social Security or Supplemental Security Income (SSA, n.d.). For disabled employees that qualify (including those with ASD), the SSA can support by covering expenses such as medications, out-of-pocket paid job coaching and transportation costs (Autism Speaks, 2013). The SSA also conducts and funds research to improve the disability determination process, benefit programs and aid from Medicare and Medicaid (SSA, n.d.).
The ODEP’s mission is to fully integrate people with disabilities into the workforce by advancing policies and practices to improve the quantity and quality of employment opportunities (ODEP, n.d.). The ODEP hosts a variety of service branches that do research, provide free support to eligible clients and up-to-date information about the labor climate for people with disabilities (ODEP, n.d.). In particular, the Job Accommodations Network (JAN) offers comprehensive resources including free educational information and consulting for both employees and employers to improve the workplace and comply with ADA (JAN, n.d.).
The OFCCP enforces compliance programs to enforce affirmative action and equal employment opportunities for businesses that contract with the government (OFCCP, 2014). The OFCCP is not only a resource center for company contractors, but also for individuals with disabilities and for veterans. The OFCCP provides training, tools, multimedia presentations and news updates on the latest regulations to support compliance (OFCCP, 2014).
state agencies.
State agencies are responsible for coordinating the allocation of government funding as well as enforcing state laws related to developmental disabilities. Each state channels these responsibilities through different departments as best fits in their unique internal structures. In California, the Department of Developmental Services (CDDS) operates under the guidelines of the Lanterman Developmental Disabilities Service Act, and is responsible for providing individuals with disabilities the support and services they need to increase their independence (CDDS, 2014). This may be in the form of state-funded developmental centers, but is more widely implemented through state-funded services allocated by Regional Centers.
Regional Centers are private nonprofit corporations that provide access to services for individuals with developmental disabilities. Regional centers can directly provide services or introduce families to community agencies contracted with the respective regional center. Typically, when a community agency is contracted by a regional center, the regional center will be able to coordinate the funding for services rendered by the community agency. In addition, they offer individual case managers who help eligible individuals and their families to develop a plan of services that includes everything from assessment to community resources and advocacy support (CDDS, 2014). Several states have their own system of regional centers. For example, California’s twenty-one regional centers are funded and contracted with the California Department of Developmental Services (CDDS, 2014). In Colorado, there are three regional centers contracted with the Colorado Department of Human Services. They provide direct services, as well as service coordination with contracted agencies (Colorado Department of Human Services, 2014).
In addition, each state has a Vocational Rehabilitation (VR) system composed of federally funded but state-run centers that provide vocational support services for individuals with disabilities who want to obtain and maintain jobs (U.S. Department of Education, 2014). The VR supports eligible individuals through evaluations, creation of an individualized employment plan, and placement opportunities with companies that provide needed accommodations. Success is job stability (Autism Speaks, 2013). However, the VR is not typically a first choice resource because of its lack of programmatic flexibility to manage the diversity of the ASD diagnosis (Standifer, 2009).
non-government organizations for ASD.
The National Autism Network (NAN) is an online-based resource with over 18,000 service providers in the U.S. for individuals and families with ASD. The NAN website provides the largest number of service providers available from the national to the local level, organized by the type of service rendered. In addition, the website offers in-depth information and links for topics including legislation, research, resources, discussion forums, news and events.
The Autism Society is a nonprofit organization founded in 1965. Its initiatives include supporting advocacy, services, education and research. Particularly, the Autism Society reviews and interprets scientific investigations, furthering the understanding and treatment of ASD for those affected or affiliated with ASD. The Autism Society is well recognized for their persuasive initiatives that have led to the passage of several pieces of legislation (Autism Society, 2012). They are also known for holding the largest annual national conference addressing a full array of topics related to ASD (Autism Society, 2012).
Autism Speaks is a non-government organization that was started in 2005 by a couple disappointed in the lack of resources and options for their grandchild with ASD (Autism Speaks, 2013). They founded what would become one of the most effective and visible international advocacy agencies for ASD. The agency focuses on developing international awareness of ASD, advocacy for individuals and their families, outreach and resources for family services, as well as raising global funds to further science and research. Autism Speaks signature annual event is Walk Now for Autism Speaks which has raised more than $30 million dollars. To date, Autism Speaks has raised over $200 million dollars from events, private donors, private grants and public grants (Autism Speaks, 2013). The organization also spearheaded the successful initiative for the United Nations to have the 2nd of April be internationally recognized as World Autism Day (United Nations, 2008). Autism Speaks also offers a comprehensive variety of tool kits including “The First 100 days” for newly diagnosed families, support materials for doctor visits, behavior guidance and life transition support (Autism Speaks, 2013b).