Health Care, Medicaid, and Medicare
Position of the Disability Community:
People with disabilities, and all Americans, need access to affordable health care coverage that covers comprehensive services. The Affordable Care Act should not be repealed and there should be no budgetary or service reductions to Medicaid, the Children’s Health Insurance Program, or Medicare.
If public officials want the disability vote:
Oppose repealing the Affordable Care Act (ACA).
The ACA expanded access to health care and coverage of comprehensive services, in addition to creating fundamental non-discrimination protections for people with disabilities. The disability community led the fight to prevent the repeal of the ACA throughout 2017. The ACA helps more people with disabilities gain health insurance, access the services they need, and eliminates discrimination due to pre-existing conditions (including lifetime caps on services). The ACA, and all protections for people with pre-existing conditions should be preserved. A lawsuit filed by Texas and 19 other states seeks to invalidate the Affordable Care Act and eliminate protections for people with pre-existing conditions. Learn more about the disability community and the ACA.
Oppose cuts to Medicaid.
More than ten million people with disabilities receive health coverage, acute care, long-term services and supports (LTSS), and home and community based services (HCBS) through Medicaid. The ACA repeal bills last year and the White House this year proposed changing how Medicaid is structured, leading to massive cuts. Instead of the current federal-state funding partnership, states would instead receive a set amount of money from the federal government in the form of block grants or per capita caps. This means that Medicaid funding would no longer be directly linked to the services that people need and, in all proposals, the funding will be slowly reduced—Medicaid programs would have to limit the amount of services they provide per individual, limit the number of people who receive services, eliminate optional services (including HCBS), or some combination of the two. Either way, this change would result in major funding cuts and fewer services for fewer people. The disability community opposes repeal of the ACA and consumer protections for people with pre-existing conditions.
Oppose the institutional bias in Medicaid.
People with disabilities not only rely on Medicaid for basic health care services, but Medicaid is the only provider of many disability-specific services. These services allow people with disabilities to live independently in the community, but states can limit access to them and create waitlists. In contrast, Medicaid must pay for institutional services. The disability community supports ending this institutional bias through federal legislation, including the Disability Integration Act (DIA) (S.910/H.R.2472), and state efforts to expand access to community-based services and eliminate waitlists.
Support expanding Medicaid.
The ACA allows states to expand Medicaid eligibility based on income levels while prohibiting enrollment caps and waiting lists. Many people with disabilities, especially mental health disabilities, gained coverage for the first time through the Medicaid expansion. In addition, researchers have found that people with disabilities are more likely to work in Medicaid expansion states than in non-expansion states. The ACA repeal bills from last year would have eliminated the Medicaid expansion, cutting off health care for millions of people. The disability community opposes efforts to repeal the expansion and supports expanding Medicaid everywhere. To see which states have not yet expanded Medicaid, visit A 50-State Look at Medicaid Expansion.
Oppose work requirements, time limits, and other barriers to eligibility that jeopardize access to Medicaid coverage.
Some states have implemented or are trying to implement work requirements (sometimes referred to as community engagement), time limits, and other burdens on Medicaid eligibility, placing major barriers between people and needed health insurance. Taking away health care because someone can’t find a job or can’t find a job with health care jeopardizes necessary health coverage for millions of low-income and middle-income individuals and families, which include people with disabilities. States should not implement these barriers. Federal proposals to expand these barriers should be rejected.
Oppose cuts to Medicare and the Children’s Health Insurance Plan (CHIP).
Medicare covers over nine million people with disabilities under age 65 and at least a quarter of the nine million children on CHIP have disabilities. These members of the disability community rely on Medicare for health insurance and prescription drug coverage. Significant numbers of program recipients with disabilities under age 65 report barriers to accessing health care and cost related issues under current Medicare funding levels. The White House has proposed cutting funding for CHIP. Funding levels for Medicare and CHIP need to be maintained and, preferably, expanded.
Support the EMPOWER Care Act.
The EMPOWER Care Act (S.2227/H.R.5306) reauthorizes the Money Follows the Person Program (MFP) through 2022, so that people with disabilities can transition out of institutions and into the home and community of their choice. A study by the Center for Medicare and Medicaid Services found that those who have moved from institutions to home and community-based care consistently show quality of life improvements. On average, per-beneficiary per-month expenditures for those participating in MFP declined by $1,840 (23 percent) during the first year of transition from a nursing home to home and community-based long-term services and supports. The disability community supports the EMPOWER Care Act and other legislation that expands home and community based services (HCBS).
Support the strong and transparent state implementation of the Medicaid home and community-based services setting rule (HCBS Settings Rule).
Home and community based services (HCBS) provide opportunities for Medicaid participants to receive services in their own home or community, rather than in institutions or other isolated settings. These programs serve a variety of targeted population groups, such as people with intellectual or developmental disabilities, physical disabilities, and/or psychiatric disabilities. In 2014, the Centers for Medicare and Medicaid (CMS) issued regulations that set requirements for the settings in which home and community-based services can be provided. Each state must develop a plan for how it will implement HCBS. The majority of states still need to complete their plans, which includes soliciting input from the public. Check the status of your state’s plan.
Support a living wage for Personal Care Attendants (PCA).
PCA’s help people with disabilities with tasks of daily living, which allows people with disabilities to live, work, go to school, and participate in their community. The turnover rate of among PCAs is very high, in part because of low wages, lack of sick and vacation days, and often, no health insurance. Despite the fact that their work is essential to the independence and self-determination of people with disabilities, the mean hourly wage for personal care aides nationally is $10.92. The important work of a PCA must be valued as a career option and paid as such. A living wage and benefits would help people with disabilities retain more reliable, qualified, and longer-term PCAs.
Oppose electronic visit verification.
The 21st Century Cures Act of 2016 mandated that states create and use Electronic Visit Verification (EVV) systems, which often include intrusive tracking procedures for the delivery of Medicaid personal care and home health services. While there are different methods of implementation – GPS tracking, required home phone check-ins, and randomized check-in calls – EVV assumes that many people with disabilities are homebound, violates privacy, and discriminates against non-English speakers. The disability community supports repeal of the EVV requirement. A bill was recently signed by President Trump to delay implementation of EVV by one year – we must keep up the pressure to support bills that would eliminate, narrow, or further delay EVV requirements.
Support COMPREHENSIVE Universal health care.
The disability community strongly supports universal health care and has been interested in the various proposals under consideration on Capitol Hill. The disability community would be particularly supportive of any proposal that not only provided universal access to affordable health insurance, but that also ensured that all health care provided access to community-based long-term services and supports, including HCBS and other services that people with disabilities require to live independently in the community.
Oppose Legalizing Doctor Assisted Suicide.
Many disability rights organizations oppose the legalization of assisted suicide, which is a dangerous and harmful public policy, creating a discriminatory double standard under which some suicidal people get suicide prevention while others get suicide assistance, depending on their health and disability. When assisted suicide is legal, it’s the cheapest treatment available—an attractive option in our profit-driven healthcare system. Terminal diagnoses and prognoses are too often wrong, leading people to lose good years of their lives. If one doctor says “no,” people can “doctor shop” for another who says “yes.” No psychological evaluation is required, putting depressed people in danger. The highly touted “safeguards” turn out to be truly hollow, with no real enforcement or investigation authority. Assisted suicide is a prescription for abuse: an heir or abusive caregiver can steer someone towards assisted suicide, witness the request, pick up the lethal dose, and in the end, even administer the drug—no witnesses are required at the death, so who would know? Many other pressures exist that can cause people with compromised health to hasten their death. Evidence appears to show that assisted suicide laws also lead to suicide contagion, driving up the general suicide rate. People already have the right to good pain relief, including palliative sedation if dying in pain. Many important concerns are set forth in proposed House Concurrent Resolution 80, which should be supported, “Expressing the sense of the Congress that assisted suicide puts everyone, including those most vulnerable, at risk of deadly harm and undermines the integrity of the health care system.”
Support the HEADs UP Act.
The HEADs UP Act – Healthcare Extension and Accessibility for Developmentally disabled and Underserved Population Act of 2018 (H.R. 6611) – would amend the Public Health Service Act to expand and improve health care services for individuals with developmental disabilities.
Additional Information and Resources:
- Protect Our Medicaid – Center for Public Representation
- Medicaid Enrollees by Enrollment Group – Kaiser Family Foundation
- Medicaid Per Capita Caps and Block Grants: Devastating for People with Disabilities – Consortium for Citizens with Disabilities (CCD)
- 1115 Waiver Element: Work Requirements – Families USA
- Section 1115 Medicaid Demonstration Waivers: The Current Landscape of Approved and Pending Waivers – Kaiser Family Foundation
- Statement on Work Requirements – Collaboration to Promote Self-Determination
- Medicaid and Work Requirements: New Guidance, State Waiver Details and Key Issues – Kaiser Family Foundation
- Medicaid Work Requirements Will Reduce Low-Income Families’ Access to Care and Worsen Health Outcomes – Center on Budget and Policy Priorities
- Many Working People Could Lose Health Coverage Due to Medicaid Work Requirements – Center on Budget and Policy Priorities
- EMPOWER Care Act – Center for Public Representation
- The Problem With Work Requirements for Medicaid – JAMA Forum
- Information about the HCBS Settings Rule and Its Implementation in your state – HCBSadvocacy.org
- Medicaid expansion & what it means for you – HealthCare.gov
- Electronic Visit Verification (EVV) – Center for Public Representation
- Murkowski, Brown Introduce Bill Allowing States Grace Period to Comply With New Federal Law – Senator Lisa Murkowski (R – AK)
- Public Policy Agenda for the 115th Congress 2017-18 – The Arc
- Assisted Suicide Laws – Disability Rights Education & Defense Fund
- Oregon State Assisted Suicide Reports Substantiate Critics’ Concerns – Not Dead Yet
The Health Care, Medicaid, and Medicare section of the 2018 REV UP Issues Guide was published on June 25, 2018 and last updated on September 20, 2018. AAPD will do it’s best to keep this guide up-to-date as Executive and Legislative changes happen; however, we recommend double-checking Congress.gov, WhiteHouse.gov, or Google for the latest updates.