Long Term Services and Supports (LTSS) Issues for People with Disabilities

Our health care system is principally designed to meet the country’s short term or “acute” care needs. People with disabilities often need long term services and supports to address their chronic health conditions and their desire to live as independently as possible. These long term services and supports include assistance with activities of daily living, such as getting dressed, taking medication, preparing meals, and managing money. Ten million Americans daily need long term services and supports and, of these, forty percent are under age 65. The vast majority of long term services and supports are provided informally by family members who incur average annual out-of-pocket costs of $6,000 to $16,000 caring for their family member with a disability. Only 9% of Americans have private long term care insurance due to its high costs and Medicare provides only very limited long term care coverage.

The primary issues of concern regarding long terms services and supports are:

Institutional Bias of Medicaid Home and Community Based Services (HCBS)

Medicaid is overwhelmingly the largest provider of health care and long term services and supports for persons with disabilities. Currently, 57% of Medicaid’s long term care funding goes to institutional care. People are entitled (guaranteed) to nursing facility care under Medicaid; however, people who want to receive their long term services and supports in community settings are not entitled to home and community based services (HCBS).  Under Medicaid, states must provide nursing home care to anyone who needs that type of care, but may limit the number of people who get HCBS.  In this way, Medicaid has a built in bias toward institutional care. States currently have two options to fund HCBS – the HCBS waiver (Section 1915(c)) or the HCBS state plan option (Section 1915(i)). The 1915(c) waiver is only available to individuals who qualify for an institutional level of care. Under this waiver, states have been able to cap the number of eligible people, keep waiting lists, and limit services to certain geographic areas. Additionally, states must apply for renewal of the waiver from Medicaid which is a complex and lengthy process. The 1915(i) state plan option, on the other hand, allows states to have eligibility that is below the institutional level of care - before people need nursing home care. Due to the new health care reform law, as of April, 2010, the 1915(i) state plan option no longer allows states to cap the number of eligible people, keep waiting lists, and limit services to certain geographic areas.  They can target services to certain population groups.  In the past the very few states have chosen to use the 1915(i) state plan option and there is no incentive for them to do so in the future.

Despite the inclusion of the Community First Choice (CFC) Option in the new health care reform law, the bias toward institutional care in Medicaid remains. The CFC option which would provide for attendant services and supports is, by definition, optional for states. Though states that choose this option will receive a 6% increase in their FMAP (federal share of Medicaid spending known as the Federal Medical Assistance Percentage) for HCBS services, it remains to be seen how many states actually choose the CFC option given the current state budget crises. Unless states choose the CFC option, they continue to be allowed to maintain waiting lists for home and community based waiver services, have caps on services, and restrict services to certain parts of their state.

Waiting Lists for Medicaid HCBS

Due to the limited number of people who can get services through states’ HCBS waiver programs, there are currently over 300,000 people with disabilities on waiting lists for home and community based long term services and supports across the country. The wait can be as long as 8-10 years. This crisis results in unnecessary, unwanted and costly institutional care; family members being forced to quit jobs or take on second jobs to help care for their loved one; and having to leave their loved ones unattended or in the care of unqualified persons.

Funding for Medicaid HCBS

The economic recession has caused many states to make drastic reductions in their Medicaid programs, which are having devastating effects on people with disabilities, families and communities. In response, the federal government provided a temporary increase in the federal share of Medicaid spending (known as the Federal Medical Assistance Percentage (FMAP)). The American Recovery and Reinvestment Act provided states with a temporary increase in the federal share of Medicaid payments from October 1, 2000 through December 31, 2010 to help support Medicaid and state budgets during the recession when demand for programs increases and states have less ability to finance care. To be eligible for these increased funds, states could not restrict eligibility levels or make it more difficult for individuals to apply for coverage. Later, Congress extended the increased FMAP to states through June 2011.

To help take pressure off state Medicaid budgets in the long term, advocates will be encouraging employers and individuals to participate in the new national long term care insurance program, the Community Living Assistance Services and Supports (CLASS) program, which was scheduled to become effective in January of 2011.  The date has been pushed back as policymakers grapple with design of the program.

Dual Eligibles

There are approximately 9.2 million people who are eligible for both Medicaid and Medicare, referred to as dual eligibles or duals. Individuals with disabilities under the age of 65 comprise about 38% (3.4 million) of duals and estimates of the percentage of duals that are individuals with intellectual and developmental disabilities (I/DD) vary from 5% to 18%. Duals represent 21% of Medicare beneficiaries and account for 36% of Medicare costs. Similarly, dual eligibles constitute 15% of Medicaid enrollees, but account for 39% of the program’s costs. Over 60% of dual eligible beneficiaries have incomes below the poverty level. They also require a complex array of services from a variety of providers across different settings. In short, duals are people with high needs who are very poor.

Current Long Term Services & Supports Headlines

The Capitol Insider » Long Term Services and Supports
Administration for Community Living Releases Guidance on Person-Centered Planning and Self-Direction

Last week, the Administration for Community Living (ACL) released guidance which outlined standards for person-centered planning and self-direction. ACL has indicated that these principles will be embedded into all of the Department of Health and Human Services (HHS)-funded home and … Continue reading


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Monday, July 14, 2014 4:22:59 PM

Technical Assistance to Help States Comply With New Home and Community-Based Setting Rules

The Centers for Medicare and Medicaid Services (CMS) reposted technical assistance documents for states to assist them in complying with the new home and community-based setting rules.   Documents originally posted on the CMS website were taken down and the original … Continue reading


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Monday, March 24, 2014 4:28:04 PM

Forum on Medicaid Managed Care This Month

The National Council on Disability (NCD) will be holding a forum on Medicaid managed care in Chicago on March 24. This event is part of a national series that NCD is holding across the nation. Previous forums have been in Kansas … Continue reading


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Tuesday, March 18, 2014 11:55:42 AM

Our Legislative Agenda for Long Term Services and Supports

Committees of Jurisdiction

LTSS in the Health Care Reform Law

CCD Long Term Services & Suports Task Force

  • The CCD Task Force on Long Term Services and Supports addresses the issues concerning non-acute health, community living, employment supports, recreational assistance, and other supports that enable individuals with disabilities of all ages to be independent and productive members of the community. 

What is The CCD?

Helpful Links