Position of the Disability Community:
Community living is a right of all people with disabilities, regardless of age or type of disability. Programs and services that help people live in the community, prevent them from being forced into institutions and nursing homes, and that help people move back to the community from institutional settings must be supported, funded, and expanded.
If public officials want the disability vote:
Support the provision of long-term services and supports (LTSS) in the community through the Disability Integration Act (DIA), the EMPOWER Care Act, and the Home and Community Based Services Settings Rule.
The Disability Integration Act (DIA) is federal legislation that has been proposed in both houses of Congress, with bipartisan support (S.910/H.R.2472). The DIA states that every individual eligible for long-term services and supports (LTSS) has a federally protected civil right to receive them in the least restrictive setting of their choice, which is almost always one’s own home. It requires states and service providers to deliver services in a way that allows people with disabilities to have maximum possible control over their LTSS in the most integrated setting. Congress must pass this Act. The DIA will help strengthen the civil right of people with disabilities to community living guaranteed by the Supreme Court in its 1999 decision in Olmstead v. L.C..
The EMPOWER Care Act (S.2227/H.R.5306) reauthorizes the Money Follows the Person (MFP) program through 2022, so that people with disabilities can transition out of institutions and into the home and community of their choice, with the funding to make that possible. 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. The EMPOWER Care Act reduces from 90 days to 60 days the amount of time one must be in a nursing home before they are eligible to be assisted to transition back into the community. It also improves reporting and accountability for the MFP program. On average, expenditures for those participating in MFP declined by $1,840 per-beneficiary per-month (23 percent) during the first year of transition from a nursing home to home and community-based LTSS.
Home and community based services (HCBS) provide opportunities for Medicaid participants to receive services in their own home and community, rather than in institutions or other isolated settings. HCBS programs serve a variety groups, such as people with intellectual or developmental disabilities, physical disabilities or who are aging, and/or people with 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.
Oppose federal and state cuts to Medicaid.
More than ten million people with disabilities receive health coverage, acute care, and long-term services and supports (LTSS) through Medicaid. The White House has proposed a shift in how Medicaid is structured. Rather than the current system of state matching grants, states would instead receive a set amount of money from the federal government in the form of block grants or per capita caps. As costs and the need for Medicaid continues to grow, state Medicaid programs would have to limit or cut back the amount of services they provide per individual and/or limit the number of people who receive services. Either way, this means less services for fewer people, and the situation would worsen every year as costs escalate.
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 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.
Oppose attempts by the Department of Housing and Urban Development (HUD) to increase rent in federally subsidized housing and impose work requirements.
U.S. Housing and Urban Development (HUD) Secretary Ben Carson recently unveiled “The Making Affordable Housing Work Act,” which would impose harmful rent increases on nearly all families across many essential HUD affordable housing programs – including people with disabilities and their families. His proposal also makes it easier for housing authorities to impose work requirements.
Rep. Dennis Ross (R-FL) is promoting a draft bill with similarities to Carson’s proposal that also needs to be opposed because of the negative impact it would have on the lives of people with disabilities. The bill titled the “Promoting Resident Opportunity through Rent Reform Act” would make it easier for housing authorities to raise rents on the most vulnerable Americans and impose work requirements.
Support the protection of funding for the Low-Income Home Energy Assistance Program.
The White House proposed budget eliminates the Low-Income Home Energy Assistance Program, a utility relief program that enables millions of households, of which 38% have a member with a disability, to keep their homes at safe temperatures.
Support affordable and accessible housing for people with disabilities. This housing should be in mainstream buildings rather than in segregated buildings for people with disabilities.
The current White House budget proposal includes a cut of $8.8 billion to the U.S. Department of Housing and Urban Development’s (HUD) Section 811 program that provides affordable and accessible housing in integrated settings. The disability community is committed to protecting this funding.
Oppose funding cuts for Supplemental Nutrition Assistance Program (SNAP).
The recent White House budget proposed deep cuts to SNAP over the next decade, which would greatly impact people with disabilities. According to the Center on Budget and Policy Priorities data analysis of the 2015 National Health Interview Survey, over 1 in 4 SNAP participants, equivalent to over 11 million individuals have a functional or work limitation or receives federal government disability benefits. The U.S. Department of Agriculture Economic Research Service reports food insecurity impacts one third of households with a working age adult who is out of the labor force due to disability, and one quarter of households with a working age adult with disability who has stayed in the workforce. The Senate’s bipartisan Agricultural Improvement Act of 2018 would strengthen and reaffirm SNAP, and also make targeted investments in SNAP to help people with disabilities and seniors.
Oppose work requirements for eligibility to federal programs, including housing subsidies, food stamps, and Medicaid.
Recent proposals have included work or community service requirements for people accessing government supports. These proposals would harm people with disabilities by creating additional barriers to securing the supports needed for independent living. Taking away services because of an inability to find work should not be a penalty for low-income and middle-income individuals and families, including those with disabilities. Imposing work requirements unacceptably jeopardizes necessary health coverage for people with disabilities.
Support Inclusive Disaster Response and Management.
The Americans with Disabilities Act (ADA) of 1990 mandates equal access before, during, and after disasters. The Rehabilitation Act of 1973 mandates communication accessibility when disasters occur. Despite these two laws, people with disabilities continue to be disproportionately impacted before, during, and after disasters. As a result, too many disabled people have lost their homes, their families, their freedom, their assistive technology, and even their lives. Emergency management officials must include people with disabilities at every stage of planning and response.
Support the Disabled Access Credit Expansion Act.
The Disabled Access Credit Expansion Act (H.R. 5536 | S.3459) would make it easier for small businesses to become accessible to people with disabilities and help those businesses comply with the Americans with Disabilities Act (ADA). Specifically, the bill would increase tax incentives for businesses to facilitate ADA compliance, increase funding for ADA mediators at the Department of Justice, and collect collect ADA Information Line Data from the Department of Justice to improve the ways individuals with disabilities and businesses learn about their rights and how facilities can become ADA-compliant.
Additional Information and Resources:
- Action Alert! The Disability Integration Act has been Introduced in the US Senate and House – AAPD
- Rights Task Force – Consortium for Citizens with Disabilities
- Long Term Services and Supports Task Force – Consortium for Citizens with Disabilities
- Civil Rights and the ADA – National Council on Independent Living
- Civil Rights Issues for People with Disabilities – The Arc
- Disability Rights Section – US Department of Justice
- Disability Rights – American Civil Liberties Union
- FEMA Office on Disability
- Federal Housing Administration Section 811 Supportive Housing for People with Disabilities – Benefits.gov
- Empower Care Act – Center for Public Representation
- Portlight Inclusive Disaster Strategies
- Join the Fight to Protect Medicaid – Center for Public Representation
- HCBS Advocacy Coalition
The Community Living 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.