Making a Difference Together
Everyone has the right to live fully and to understand laws that affect them. The Autism Society’s Public Policy Committee and Board of Directors work together to advocate for legislation that improves quality of life. The committee identifies and writes legislation that ensures the rights of individuals with Autism and their families, and explains the effects these laws have on the community. Connecting to change starts here.
The Autism Society, the nation’s leading advocacy organization for individuals with Autism and their families, believes that all people with Autism should have access to high-quality, affordable health care that meets their specific needs. This includes private health insurance, public programs such as Medicaid and Medicare, and long-term care.
The Autism Society supports the following health care principles for individuals with autism and their families:
- Ensure that health insurance is affordable.
- Maintain the requirement that health insurance is comprehensive in order to meet the needs of individuals with Autism.
- Ensure that nondiscrimination provisions and the prohibition on pre-existing condition clauses are maintained and that young adults can remain on their parents’ insurance until age 26.
- Ensure that all healthcare plans are transparent; include the disability community in any discussion to ensure that any changes meet the needs of individuals with Autism.
- Ensure the entitlement to seamless delivery of the Early and Periodic Screening Diagnosis and Treatment (EPSDT) program.
- Ensure that any healthcare plan is adequately funded to accomplish the goals of the healthcare delivery system for individuals with Autism.
- Protect existing health care entitlements under Medicare and Medicaid, including Medicaid expansion.
- Ensure that the essential health benefits package is maintained to provide comprehensive benefits, including rehabilitative and habilitative services.
Patient Protection and Affordable Care Act of 2010 (better known as the Affordable Care Act or simply the ACA). This landmark health reform law contains many provisions that will help ensure accessible, comprehensive, affordable, non-discriminatory coverage for consumers, especially people with disabilities.
- The Affordable Care Act and Autism and Related Conditions
- National Conference of State Legislatures – detailed summary (2011)
Medicaid is the nation’s primary way of financing and delivering community-based health and long-term services to children and adults with disabilities. It is the nation’s largest health care program and serves nearly 60 million low-income Americans, including an estimated 9.9 million people with disabilities.
- Medicaid Plain Language (AUCD fact sheet)
Medicare was created in 1965 when people over 65 found it virtually impossible to get private health insurance coverage. Medicare has made access to health care a universal right for Americans once they reach age 65. This has helped improve the health and longevity of older Americans.
Autism Family Caregivers Act (H.R. 6783/S. 4198): This bill would authorize the Secretary of Health and Human Services to award grants for providing evidence-based caregiver skills training to caregivers of children with autism spectrum disorder and other developmental disabilities.
- Text of Senate and House Bill (H.R. 6783/S. 4198)
- Action Alert
People with Autism spectrum disorder are more likely than the general population to have comorbid psychiatric disorders. Although prevalence rates vary widely, converging evidence suggests that anxiety disorders and ADHD are most prevalent.
- Substance Abuse and Mental Health Services Administration (SAMHSA)
- FAQ for Understanding 988 and How It Can Help with Behavioral Health Crises
- Find Mental Health Treatment
- Autism Society Resource: COVID-19 Support
- Disability Information and Access (DIAL) – Administration for Community Living hotline for information related to accessing the COVID-19 vaccines.
- CDC’s COVID-19 Toolkit
Medicaid Services Investment and Accountability Act (2019)
RESOURCES FOR INDIVIDUALS, PARENTS, AND FAMILIES
- Kaiser Family Foundation – an excellent source of federal and state health care information
- CCD Health Task Force
- Medicaid – Autism Services
- Learn more about Medicaid
- Medicaid – Government Benefits and Special Needs Trusts
- Early and Periodic Screening, Diagnostic, and Treatment Benefit of Medicaid
The Autism Society supports policies that permit those living with Autism to live in inclusive, safe, accessible, and affordable communities of their choice and be provided with a comprehensive range of support and accommodations for meaningful engagement within the community. Children and adults with Autism and their families have the right to choose the services and support that work best for them, as well as the right to choose providers of those services.
We hope that through our support, we will:
- Provide guidance for existing regulations regarding home and community-based services to those with Autism and their families.
- Ensure those with Autism and their families know their rights when it comes to home and community-based services.
- Educate and advocate for the expansion of home and community-based services.
Autism Collaboration, Accountability, Research, Education, and Support (CARES) Act: This law expands and coordinates existing federal efforts related to Autism including research being conducted within the National Institutes of Health (NIH), surveillance and awareness activities at the Centers for Disease Control and Prevention (CDC), and professional development and research into evidence-based interventions at the Health, Resources, and Services Administration (HRSA). It is the primary source of federal funding for Autism research, services, training, and monitoring.
The Developmental Disabilities Assistance and Bill of Rights Act of 2000 (DD ACT): This Act authorizes State Councils on Developmental Disabilities, Protection, and Advocacy System, and the Association of University Centers on Disabilities to help advocate for families and provide training, legal support, and research.
- DD Act Resource Page within the Administration for Community Living (ACL)
- What is the DD Act in Plain Language
- Text of the Law
Money Follows the Person (MFP): This program increases the use of home and community-based services, helps people transition out of institutions, and eliminates state barriers to long-term care through Medicaid. This law was last reauthorized for three years by the American Rescue Plan.
- Medicaid’s MFP Resource Page
American Rescue Plan: A law to provide urgent resources during the COVID-19 pandemic. This relief package was the first to include designated funding for special education and home and community-based services.
- Text of the Law
- Detailed Summary on Package and Autism Community Needs
Better Care Better Jobs Act (H.R. 4131/S. 2210): This bill (H.R.4131/S. 2210) expands access to Home and Community Based Services (HCBS) and provides better pay and benefits for direct care workers. Many people receive supported employment through their Medicaid waiver.
- Text of Senate and House Bill (H.R. 4131/S. 2210)
- Summary of Bill Prepared by Senate Committee Staff
- Impacts of Better Care Better Jobs Act on Home Care and Jobs
- CCD Comments on Bill
HCBS Access Act: Working Draft of Legislation (not yet introduced)
RESOURCES FOR INDIVIDUALS, PARENTS, AND FAMILIES
- Medicaid Home and Community-based Services for Older Adults with Disabilities: A Primer by Justice in Aging (Apr. 2021)
- Comprehensive Primer on HCBS
- Community Living Policy Center Dedicated HCBS Funding during COVID-19 Toolkit (Feb. 2021)
- Fact Sheet on HCBS from Disability Policy Seminar (2021)
- Information about Medicaid State Plan and Waiver Options
- Medicaid: Home & Community Based Services
The Autism Society advocates for sufficient federal funding to support people with Autism to live fully in the community.
What is the Budget?
The U.S. federal budget is the amount of spending and revenue planned for each fiscal year. Each fiscal year (FY) runs from October 1 through September 30. The President submits a budget request to Congress early in the year. Congress then develops an overall budget resolution that sets a topline funding level.
What are Appropriations?
From the topline numbers in the budget resolution, Congress then develops annual appropriations bills that provide specific funding levels for discretionary programs. Some programs receive funding depending on the number of people who qualify for them. These entitlement programs include Medicaid, Medicare, Social Security Income, and Supplemental Security Income (SNAP) programs. These programs are mandatory programs; Congress does not have control over their funding levels unless they change the laws that govern them.
The annual appropriations bills that most impact people with Autism and other disabilities are the bills that authorize funding for programs under the Departments of Labor, Health and Human Services, and Education as well as HUD housing programs.
See easy to read budget process (AUCD) for more information.
- Fiscal Year 2023 Appropriations Request
- HCBS funding in the Budget Reconciliation Process
- Advocacy Guide for Debt Ceiling Negotiations
- Letter from Autism Society, Autism Speaks, and AUCD Requesting funding in FY 23 Final Budget Negoiations
- Testimony from the Autism Society with recommendations for FY 22 (May 2021)
- Consortium for Citizens with Disabilities Developmental Disabilities, Autism and Family Supports Task Force Fiscal Year 2022 Request (Apr. 2021)
- CCD Education Task Force letter to appropriators (2021)
- FY 2022 Labor, HHS, and Education Bill Table with funding amounts
- Fact Sheet – President Biden’s Fiscal Year 2022 Budget
The Autism Society is the oldest and largest grassroots organization representing 70+ affiliates across the country. Our affiliates work to advocate at the local, state, and federal levels to help people with Autism and their families live fully. The State Advocacy page is intended to help affiliates and other allies to more effectively advocate at the state level.
- Autism Society Resource: State Advocacy Toolkit – This toolkit provides general information on federal relief laws and funding as well as resources available.
- National Conference of State Legislatures
- National Governors’ Association
- 2023 State Legislative Session Calendar: This infographic provides information on legislative sessions in each state, district, and territory.