Legislation and Policy
Access to quality, affordable health care is the foundation of an independent, productive life. For people with disabilities, who often have significant health care needs, health care access is crucial. AAPD supports quality physical and mental health care that is accessible, affordable, community-based, self-determined, and responsive to individual needs.
Many people with disabilities benefit from long-term care and support programs such as Medicaid and Social Security. These programs provide medical care, tools such as personal care aides, and other services. AAPD supports full funding of programs that benefit millions of Americans with disabilities. We advocate for an emphasis on community-based care, which provides access to family, employment, community, and full participation. AAPD also supports changes to long-term support programs that will incentivize participation in the work force.
AAPD monitors and advocates health care reform laws and regulations, health information technology policy and legislation, and federal and state funding proposals regarding long-term care.
The Affordable Care Act
The Affordable Care Act (ACA) as signed by President Obama made major changes to healthcare and insurance, and includes many provisions that will affect people with disabilities. The new law:
- Mandates health insurance for most individuals
- Provides greater choices for individuals with disabilities by eliminating insurance company discrimination based on medical history
- Provides more affordable choices and competition among providers through the creation of state-based insurance exchanges and tax credits to low-income individuals
- Provides new options for long-term supports and services
- Increases coverage for home-based and community services
- Expands coverage and options for people with disabilities under state Medicaid programs
- Limits the amount of money individuals may be required to pay through caps and the elimination of annual and lifetime benefit limits
- Protects individuals against excessive and arbitrary premium increases
- Provides more accessible and affordable options for preventive care and chronic disease
- Addresses health disparities through the collection of data on people with disabilities and providing training to medical professionals
With enactment of the law, reform is just beginning. AAPD continues to monitor progress and remain involved as implementing regulations are drafted, passed, and enacted, and will rigorously advocate for the needs of the disability community.
The Department of Health and Human Services has released final rules implementing the Affordable Care Act’s anti-discrimination protections, clarifying and expanding on the obligations of health care providers to accommodate patients with disabilities.
The American Association of People with Disabilities (AAPD) opposes the legalization of assisted suicide. AAPD fully supports the self-determination, competency, and the ability of people with disabilities to make decisions regarding all aspects of their lives. However, mistakes by health care professionals, widespread misinformation, coercion, and abuse limit the opportunity for people with disabilities to make informed and independent decisions. In addition, the legalization of assisted suicide devalues the lives of people with disabilities and would create a double standard in our society: it would mean providing suicide assistance to individuals with disabilities and health conditions, as opposed to the suicide prevention services that we provide to others.
The abuse and coercion that has occurred in places where assisted suicide is currently legal provides strong evidence that no safeguards can be effective in ensuring that people with disabilities can make an informed and independent choice. Rather than legalizing assisting people with disabilities and health conditions to end their lives, AAPD believes we should focus our efforts on ensuring that home and community based services and supports and access to quality, comprehensive, affordable health care are available to ensure that people have options that enable them to live independently and with dignity.
- Assisted suicide laws are creating a ‘duty-to-die’ medical culture – Helena Berger, President and CEO of AAPD
- When Insurance Companies Refuse Treatment “Assisted Suicide” Is No Choice At All – Helena Berger, President and CEO of AAPD and Clyde Terry, Chairperson of the National Council on Disability
Law Enforcement and People with Disabilities
In 2016, the Ruderman Family Foundation released a report noting that individuals with disabilities comprise one-third to one-half of all people killed by law enforcement officers and are “the majority of those killed in use-of-force cases that attract widespread attention. This is true both for cases deemed illegal or against policy and for those in which officers are ultimately fully exonerated.” The report faults the media for ignoring the disability component in these stories or telling them in ways that intensify stigma and ableism. According to the report, “When we leave disability out of the conversation or only consider it as an individual medical problem, we miss the ways in which disability intersects with other factors that often lead to police violence. Conversely, when we include disability at the intersection of parallel social issues, we come to understand the issues better, and new solutions emerge.”
The Center for American Progress found in their report on the mass incarceration of people with disabilities that “community-based treatment and prevention services cost far less than locking an individual up and keeping them behind bars.”
There are several potential solutions to improve interactions between police and people with disabilities:
- Crisis Intervention Teams – States and localities that have employed these teams have seen fewer injuries and deaths among officers and people with disabilities.
- Police Liason Officers and Specialized Police Officers or Non-Officers – Individuals who are trained in crisis intervention techniques and trained to better understand specific communities, such as people who are deaf or hard of hearing and people with intellectual or developmental disabilities.
- Community Services – This is the most important solution to improving interactions between police and people with disabilities. Ensuring that people with disabilities receive the community services they need can prevent these law enforcement encounters from happening in the first place. We must stop using our law enforcement system as a substitute for a failing disability service system.
For additional information view one of AAPD’s blogs about improving police interactions with people with disabilities.
CCD Disability Principles for Health Care Reform
As a new Congress begins, the Consortium for Citizens with Disabilities (CCD) Health Task Force issues these updated principles for health care reform efforts. The Consortium for Citizens with Disabilities (CCD) is the largest coalition of national organizations working together to advocate for federal public policy that ensures the self-determination, independence, empowerment, integration and inclusion of children and adults with disabilities in all aspects of society. AAPD is a member of CCD.
Below are additional resources relating to health and disability. This is a growing list. If you have resources to suggest please email firstname.lastname@example.org.
- Medicaid 1115 Waiver Tracker
Section 1115 Medicaid waivers provide states an avenue to test new approaches in Medicaid that differ from federal program rules. The Kaiser Family Foundation waiver tracker keeps tabs on what states are pursuing in pending and approved waivers.
- From Coverage to Care
From Coverage to Care (C2C) is an initiative, developed by the Centers for Medicare & Medicaid Services, to help you understand your health coverage and connect to primary care and the preventive services that are right for you, so you can live a long and healthy life.
- RARE Toolkits
RARE Toolkits provide individuals with usable information on a variety of topics related to living with and/or advocating for rare disease patients.