NCD Principles for Public and Private Healthcare Reform

March 6, 2017

The National Council on Disability (NCD) recommends the following principles for application to all proposed legislative changes to healthcare, including Medicaid. These principles are based upon the body of research spanning nearly 40 years of NCD – an independent, non-partisan federal agency charged with making such recommendations to Congress, the President and other federal agencies to promote the goals of the Americans with Disabilities Act of equality of opportunity, full participation, independent living, and economic self-sufficiency of Americans with disabilities. Nothing could be more foundational to the achievement of these goals than ensuring meaningful access to quality healthcare and home- and community-based services.

• Congress should ensure that reform of the health care system in the United States responds to the basic needs of people with disabilities by making certain that health care coverage is available and affordable to all people with disabilities regardless of preexisting conditions.1 
• People with disabilities are especially vulnerable to reductions in Medicaid spending. Typically, they require more health services and often long-term supports as well. Medicaid block-granting and per capita caps proposals tend to increase the gap between the actual costs and available funding, particularly for people with disabilities. A larger and larger share of total program costs is likely to be shifted to the states and possibly to beneficiaries in the form of higher cost-sharing requirements or dramatic service reductions.2 Steps must be taken to mitigate against this outcome. 
• Medicaid block grant and per capita caps are intended to afford states flexibility; however, states currently have a great deal of flexibility in designing and operating Medicaid programs, including managed care programs,3 long-term services and supports programs, and programs to address the needs of people with disabilities and other populations with specific health and service needs.4 This problem is likely to be exacerbated in any future economic downturn, when the need for services is likely to grow at the same time that states are least able to respond. State flexibility should remain balanced with measures that provide states with sufficient federal assistance even in the most difficult times, and that hold states accountable for providing high-quality services that meet the needs of beneficiaries using federal money.5 
• Medicaid block-grant and per capita cap proposals are likely to lead to decreases in funding relative to need, and states will actually have less flexibility to create innovative programs as increasingly tight budgets force state policymakers to trim services to the bare minimum. Accordingly, flexibility will actually be reduced as states are forced to trim services. This will stifle innovation and limit the flexibility state policymakers have to design a Medicaid program that meets the needs of their constituents.6 
• Under the Medicaid Home and Community Based Services (HCBS) Waiver program, states have considerable flexibility in determining the type of services they will provide and the number of people to whom they will provide services including personal care assistance, respite, supported employment, and many more. Many states already have long waiting lists for these critical services – a situation that could be made worse if block grant or per capita caps result in tighter state Medicaid budgets.7 This will make it more difficult to achieve the ADA integration mandate identified in the Supreme Court Olmstead case and expose states to lawsuits.   
• Required benefits made available through either private or public coverage, or a combination, must include access to appropriate prescription medications, specialty care, care coordination, durable medical equipment and assistive devices, and long-term care services. Any coinsurance payments must be affordable, and no annual or lifetime limits on these key benefits must be imposed.8 
• Section 504 of the Rehabilitation Act of 1973 (Section 504) prohibits programs that receive federal financial assistance, as well as federally conducted programs and activities, from discriminating against individuals with disabilities. Titles II and III of the Americans with Disabilities Act of 1990 (ADA) also prohibit disability discrimination and require health care providers to be physically and programmatically accessible to people with disabilities. For example, covered entities must provide aids and services so people with disabilities to communicate effectively, remove architectural barriers such as steps, narrow doorways, and inaccessible toilets, and modify policies as needed to enable people with disabilities to access services. Robust state and federal enforcement mechanisms are necessary to ensure access to healthcare by people with disabilities. Health insurers, managed care organizations, other health plans and individual health care providers must be accountable for providing accessible services to people with disabilities.9 
• People with disabilities need affordable access to healthcare that meets their needs, including essential services; products and treatments such as prescription drugs; durable medical equipment (e.g. wheelchairs, crutches, braces, ventilators and etc.); assistive technology; mental health services; and home and community-based habilitative services. 
• People with disabilities, especially those with chronic conditions, are at-risk for poor health outcomes due to lack of insurance coverage. In states that expanded Medicaid, fewer people with chronic illnesses remained uninsured.10 Reforms should be designed to ensure that this group maintains access to coverage. 
• There is a significant gain in insurance coverage when young adults are able to stay on their parents’ health insurance until they are age 26. This may be particularly important for young people with disabilities who will be able to avoid transitioning to SSI/Medicaid or who will be able to avoid negative consequences from untreated chronic conditions.11 
• The Community First Choice Option provides an important vehicle to promote community living for people with disabilities by giving states the option of providing community-based attendant services and supports under their state Medicaid plans.  Although it is a relatively new initiative, five states had taken up this option by July 2015.12 This option should remain in place as a way to promote community integration for people with disabilities.13

 

 

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1 National Council on Disability, “The Current State of Health Care for People with Disabilities,” (September 30, 2009), http://www.ncd.gov/publications/2009/Sept302009 at 323.

2 National Council on Disability, “A Medicaid Block Grant Program: Implications for People with Disabilities,” http://www.ncd.gov/publications/2013/05222013 (May 22, 2013).

3 National Council on Disability, “Medicaid Managed Care for People with Disabilities,” (March 18, 2013) http://www.ncd.gov/publications/2013/20130315 at 36.

4 Id. at Appendix E.

5 Supra note 8.

6 National Council on Disability, “A Medicaid Block Grant Program: Implications for People with Disabilities,” http://www.ncd.gov/publications/2013/05222013  (May 22, 2013).

7 National Council on Disability, “Deinstitutionalization Toolkit: Finance in Detail” http://www.ncd.gov/publications/2012/DIToolkit/Finance/inDetail/ (January 28, 2012).

8Id. at 96

9Id. at 97

10 National Council on Disability, “Implementing the Affordable Care Act: A Roadmap for People with Disabilities,” (January 26, 2016) http://www.ncd.gov/publications/2016/implementing-affordable-care-act-aca-roadmap-people-disabilitiesat 11.

11 Id. at 3.

12 National Council on Disability, “Implementing the Affordable Care Act: A Roadmap for People with Disabilities,” (January 26, 2016) at 42.

13 National Council on Disability, “Deinsitutionalization, Unfinished Business,” (October 23, 2012) http://www.ncd.gov/policy/deinstitutionalization-unfinished-business-companion-paper-policy-toolkit-0  at 19.