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Public Policy

Connecting
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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.

How can I help?

Goals to Support

Explore legislative goals, information, and resources. Click the toggles below to learn more about ways to advocate.

The Autism CARES Act is the most comprehensive federal law addressing the urgent needs of the Autism community. Over its 17-year history, this law has resulted in a significant increase in our understanding of Autism and related neurodevelopmental disabilities. Due to a sunset provision, the law must be reauthorized by September 2024. 

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.

GOALS

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 and mental/behavioral services.

LAWS

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. 

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 healthcare program and serves nearly 60 million low-income Americans, including an estimated 9.9 million people with disabilities.  

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.

LEGISLATION

Autism Family Caregivers Act (H.R. 2965/S. 1333):  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.

HEADs UP Act (H.R. 3380):  This bill aims to improve access to behavioral, medical, and dental care for individuals with I/DD. The bill directs the Health Services and Resources Administration to designate people with I/DD as a Medically Underserved Population under programs authorized in the Public Health Services Act. This designation would make a number of government programs available to people with I/DD, providing access to new primary care and specialist services, incentivizing new research, and authorizing more favorable reimbursement rates for providers of this population.

RESOURCES FOR INDIVIDUALS, PARENTS, AND FAMILIES

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.

GOALS

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. 

LAWS

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.

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 

LEGISLATION

HCBS Relief Act (S. 3118/H.R. 6296): The HCBS Relief Act would provide Medicaid funds to states for two years to stabilize their home and community-based service (HCBS) delivery networks, recruit and retain HCBS direct care workers, and meet the long-term service and support needs of people eligible for Medicaid home and community-based services. 

Better Care Better Jobs Act (H.R. 547/S. 100):  This bill (H.R.547/S. 100) 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. 

HCBS Access Act (HR 1493/S 762): The HCBS Access Act is designed to ensure eligible older adults and people with disabilities have a real choice of care and support options between home care and institutional care. The bill would, over time, eliminate HCBS waiting lists and the need for states to repeatedly apply for HCBS waivers. 

Supporting Our Direct Care Workforce and Family Caregivers Act (S 1298): This bill would award grants for the creation, recruitment, training and education, retention, and advancement of the direct care workforce and to award grants to support family caregivers.

Recognizing the Role of Direct Support Professionals Act (H.R. 2941/S. 1332): This bill would require the Office of Management and Budget to establish a separate category within the Standard Occupational Classification system for direct support professionals (i.e., individuals who provide services to promote independence in individuals with an intellectual or developmental disability) for data reporting purposes.

RESOURCES FOR INDIVIDUALS, PARENTS, AND FAMILIES

People with Autism may receive Social Security’s retirement, survivors, and disability insurance benefits based on their work history, age, or eligibility category. Many depend solely on Social Security, SSI benefits, and related health coverage for their basic survival. The Autism Society believes that we must ensure that the Social Security Act and its programs remain solvent and strong.

GOALS

We hope that through our support we will:

  • Promote reforms that streamline the SSI/SSDI process, increase asset limits, and eliminate punitive reductions in benefits.  
  • Protect and expand the effectiveness of income support programs and their related health coverage programs in the Social Security Act, including the Old Age, Survivors, and Disability Insurance (Title II), Supplemental Security Income (Title XVI), Medicare (Title XVIII) and Medicaid (Title XIX).
  • Reject any proposals to privatize or otherwise diminish Social Security trust funds or revenues dedicated to the trust funds.
  • Reject any proposal that would further narrow the definition of disability and lead to loss of benefits for individuals with Autism. 
  • Ensure the Social Security Administration has proper funding to conduct work. 

LAWS

The Social Security Act: This law was established in 1935 by President Franklin D. Roosevelt. The Social Security Act provides cash benefits for disabled workers who have lost their jobs, disabled individuals who cannot work, and retirees. The benefits include a monthly check, medical care, and benefits to surviving spouses and surviving children—known as the “survivor benefit.”

LEGISLATION

  • SSI Savings Penalty Elimination Act (H.R. 5408/S. 2767): This bill increases resource limits used to determine eligibility for the Supplemental Security Income (SSI) program. SSI is a federal assistance program that provides monthly cash payments to aged, blind, or disabled individuals with limited income and resources.
  • Stop the Wait Act (H.R. 883/S. 320): This bill allows individuals with disabilities to begin receiving Social Security Disability Insurance (SSDI) benefits in the month they become eligible for the benefits. It also allows these individuals to immediately enroll in Medicare if they cannot afford minimum essential coverage. 
    • Bill text here 
    • More information on the bill here  
  • SSI Restoration Act (H.R. 7138): This bill improves SSI by streamlining the claiming process, increasing asset limits, setting the minimum benefit at 100 percent of the Federal Poverty Level, and eliminating punitive reductions in benefits.  
  • Eliminating Marriage Penalty in SSI Act (EMPSA) (H.R. 7055): amends the Social Security Act to ensure that the Supplemental Security Income (SSI) income of adults with intellectual or developmental disabilities (IDD), such as Autism, will not be reduced because of marriage. 

  • Social Security 2100 Act (S. 2280): This bill protects our Social Security system and improve benefits for current and future generations. It provides an across-the-board benefit increase, improves the annual Cost-of-Living Adjustment (COLA) to reflect seniors’ true costs, repeals the Windfall Elimination Provision (WEP) and Government Pension Offset (GPO) that currently penalize many public servants, and provides the Social Security Administration with resources to improve customer service.
    • Bill text here  
    • More information on the bill here  

RESOURCES

  • Autism Society’s Financial Planning Webpage
  • Ticket to Work (TTW):The TTW Program can connect you with free employment services to help you decide if working is right for you, prepare for work, find a job or keep your job. It is a free and voluntary service. If you choose to participate, you can receive services such as career counseling, vocational rehabilitation, and job placement and training from Ticket to Work service providers.

With the promotion of policies that increase the quality of life of everyone living with autism, across the lifespan, core to its mission, the Autism Society monitors federal policies and regulations ensuring children with autism have access to general education and inclusive educational experiences under the Individuals with Disabilities Education Act (IDEA). 

GOALS

We hope that through our support we will:

  • Provide guidance to those with autism and other disabilities on the federal policies and regulations involving their rights and education
  • To ensure that all people with autism and disabilities have access to general education and inclusive educational opportunities
  • To promote self-advocacy of supports and services within the education system (e.g., speech, occupational therapy, physical therapy)
  • To provide individuals with autism and other disabilities the tools and resources to contact their representatives and senators to take action and advocate for educational rights

LAWS

Individuals with Disabilities Education Act (IDEA): A law that declares all children with disabilities are entitled to free and appropriate education with an individualized education plan (IEP). 

Rehabilitation Act of 1973, Section 504: A law that declares all children with any disability (with a more broad definition of disability compared to IDEA) are entitled to accommodations and modifications to meet educational goals.

Every Student Succeeds Act (ESSA): An authorization of the 50-year Elementary and Secondary Education Act that upholds equal standards and opportunities for all students, regardless of disability.  

LEGISLATION

  •  IDEA Full Funding Act (H.R. 4519/S. 2217): The IDEA Full Funding Act requires Congress to fulfill its commitment to fully fund the Individuals with Disabilities Education Act. Under IDEA, the federal government committed to pay 40 percent of the additional average per pupil expenditure for special education; however, current funding is at less than 13 percent.

  • Preparing and Retaining All (PARA) Educators Act (H.R. 4550/S. 3681): This legislation (H.R. 4550) authorizes grants to states to support the recruitment and retention of paraprofessionals.

  • Keeping All Students Safe Act (H.R. 3470/S.1750) : The Keeping All Students Safe Act would make it illegal for any school receiving federal funds to seclude a child or use dangerous restraint practices that restrict breathing, such as prone or supine restraint. 

  • RISE Act (H.R. 2401/S. 1071): The Respond, Innovate, Support, and Empower, RISE Act  will allow college students to use a variety of existing documentation as proof of a disability when seeking accommodations on campus, saving students and families money and simplifying access to accommodations. Students are currently required to obtain expensive and redundant evaluations before higher education institutions grant access to special education services.

  • Funding Early Childhood is the Right IDEA Act (H.R. 5141): This bill would increase funds for the two early childhood programs within the Individuals with Disabilities Education Act (IDEA).
  • Augmentative and Alternative Communication Centers of Excellence and National Technical Assistance Act, AACCENT Act (H.R. 5705/S. 2904): The AACCENT Act would establish three national resource centers coordinated to improve access to AAC information, tools, and supports for AAC users and their families. The centers also aim to increase the capacity and leadership skills of people who use AAC, their families, and professionals.

RESOURCES

The Autism Society supports federal policies and initiatives that facilitate greater access to the workforce and increase the employment rate for people with autism. The organization advocates for public programs that provide meaningful engagement and resources necessary to be successful in community employment. Individuals with intellectual disabilities should have support to transition away from segregated, sub-minimum wage jobs, emphasizing the use of natural supports.

GOALS

We hope that through our support we will:

  • Support laws and legislation that increase the work/employment access for people with autism and disabilities 
  • Bring awareness to laws and legislation that involve the employment of people with autism and other disabilities
  • Provide guidance on how to contact representatives and senators involving workforce and employment

LAWS

Workforce Innovation and Opportunity Act (WIOA): A law that authorizes employment programs such as vocational rehabilitation, one-stop centers, and supported employment.

  • Rehabilitation Act of 1973: WIOA authorized the Rehabilitation Act which replaced the Vocational Rehabilitation Act. This Act authorizes supported employment. 

The Americans with Disabilities Act: Civil rights law that protects against discrimination in the workplace.

LEGISLATION

Transformation to Competitive Employment Act: This bill (H.R. 1263/S. 533) authorizes funding to states to strengthen their infrastructure to be able to provide real jobs with real wages in the community for individuals with autism, developmental, and other disabilities.

Disability Employment Incentive Act: This bill (S. 3076) expands tax credits and deductions that are available for employers who hire and retain employees with disabilities.

Supporting Disabled Entrepreneurs Act (S. 3528): establishes the position of Coordinator for Disabled Small Business Concerns within the SBA, who would enhance support for disabled small businesses across capital, counseling, and contracting programs.

RESOURCES

  • Autism Society Testimony Before the House Committee on Small Business Subcommittee on Innovation, Entrepreneurship, and Workforce Development (Jan. 2024)
  • Office of Disability Employment Policy- Autism Employment Webpage 
  • For Additional Resources for Employment, see Autism Society’s Employment Page

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.

RESOURCES

Updates

  • Congress just passed FY 24 Appropriations. They are now starting negotiations on FY 25 Bills. The President submitted his budget request in late March. 

Letters

Analyses

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. 

The Autism Society, the nation’s leading advocacy organization for individuals with Autism and their families, affirms that all individuals with Autism have the same equal and inalienable rights as all human beings, regardless of age, gender, race/ethnicity, sexual orientation, culture, language, geography, religion, economic status, type of disability or level of needs. Historically, individuals with Autism have faced discrimination and barriers that have denied them their full human and civil rights. As a result of this denial, individuals with Autism have been faced with marginalization and poverty at disproportionate rates in comparison to others. International, federal, state, and local governments have an obligation to protect the human rights of all citizens, including individuals with Autism. Legislation, policies, and laws must reflect basic human rights, including the right to health care, education, independent living and participation in the community, access to justice, an adequate standard of living, and freedom from torture or cruel, inhumane, or degrading treatment or punishment.

LAWS

The Americans with Disabilities Act: (better known as the ADA) The ADA is the most fundamental law protecting the civil rights of people with all types of disabilities, including those with autism. The ADA provides civil rights protections to people with autism similar to those provided to individuals on the basis of race, color, sex, national origin, age, and religion. It guarantees equal opportunity for individuals with autism in public accommodations, employment, transportation, state and local government services, and telecommunications.

Section 504 of the Rehabilitation Act: Section 504 forbids organizations and employers from excluding or denying individuals with disabilities an equal opportunity to receive program benefits and services. It defines the rights of individuals with disabilities to participate in and have access to, program benefits and services.

LEGISLATION

Data on Interactions and Accountability for Law Enforcement with Individuals with Disabilities (DIALED) Act (S. 1730): This bill would strengthen the collection of data regarding interactions between law enforcement officers and individuals with disabilities.

Safe Interactions Act (S. 1731): This bill would provide grants to enable nonprofit disability organizations to develop training programs that support safe interactions between law enforcement officers and individuals with disabilities and older individuals.

The Human-Services Emergency Logistics Program (HELP) Act (S. 1729): This bill would facilitate nationwide accessibility and coordination of 211 services and 988 services in order to provide information and referral to all residents and visitors in the United States for mental health emergencies, homelessness needs, other social and human services needs, and for other purposes.

Guardianship Bill of Rights Act (S. 1148): establishes programs and requirements to support the rights of older individuals and individuals with disabilities who are in guardianships, conservatorships, or other protective arrangements. 

  • Bill text here  
  • More information on the bill here  

RESOURCES

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