Loud and Clear: A Special Needs Conversation

Unfinished Business

By Michael Morris, Executive Director
National Disability Institute

The Commission on Long-Term Care was charged by Congress with developing recommendations for the design and financing of a comprehensive, coordinated and high quality system of services and supports for individuals below and above the age of 65 to live full and healthy lives. Although on October 1st the Affordable Care Act (Obamacare) implementation opened with a myriad of choices for all Americans to purchase health care services from health exchanges being offered for the first time by many states and the federal government, neither private insurance nor public programs offer comprehensive long-term services and supports to meet individual functional and cognitive needs in the least restrictive setting.

The commission was asked to do what Congress refused to find the political will to do with the passage of Obamacare: fix the gaps and current insufficient, disjointed array of long-term services and supports (LTSS) that pose catastrophic risks and overwhelming costs for most families nationwide. More than two thirds (68 percent) of Americans believe they will be able to rely on their families to meet their LTSS needs when they require help. An overwhelming body of research and changing demographics tell us otherwise. Given that individuals with significant disabilities are living longer, there are fewer family caregivers alive and able to provide home- and community-based services. Faced with the competing demands of work and caregiving, caregivers are experiencing increased emotional and physical strain, in addition to growing financial hardship. This paints a grim picture for the future.

In September, the commission issued its report and, perhaps not surprisingly, the members who were approved by the Democratic and Republican leaders of the House and Senate and President Obama could not reach agreement on solutions that would restructure current programs and develop an expanded public social insurance program. The Commission could not agree to end Medicaid’s bias toward institutional care or on the need to pay direct care workers more and improve their benefits.

Currently, Medicaid is the single largest payer for LTSS. In 2011, total spending for LTSS expenditures from all sources was $211 billion dollars, of which Medicaid costs were $131 billion. About 50 percent of Medicaid LTSS spending pays for services for persons less than 65 years old. In response to budget deficits, almost every state has initiated cutbacks in Medicaid spending, reducing the duration and scope of covered services.

At the same time, an increasing number of states are turning to managed care organizations to contain LTSS costs, which will further constrain access to needed home- and community- based services for individuals with disabilities and their families.

What the commission members could agree on is a vision for “a more responsive, integrated, person-centered and fiscally sustainable LTSS delivery system that ensures people can access quality services in settings they choose.” They also could agree that services be “person and family centered,” “meet individual needs in the least restrictive setting consistent with their preferences,” and that there be “easy to access information and assistance for persons with functional and cognitive limitations and their caregivers to navigate the system.”

What they could not agree on is who will pay ̶ and how ̶ for such an LTSS system. Debate over the level of public versus private responsibility for LTSS brought forward multiple recommendations without full agreement. A minority of commission members proposed multiple ways to increase access to LTSS for persons with disabilities, including tax-preferred savings accounts to cover the future costs of health care, employment support, housing, transportation, the purchase of technology and education, an expansion of the Medicaid Buy-In program for workers with modest earnings and a new demonstration program for workers with significant disabilities with high LTSS costs, who also have higher earnings. These commissioners recognized that a social insurance program that spreads the risk for the costs of LTSS as broadly as possible is essential not to supplant, but to supplement, the role of private insurance and family financing and caregiving. Thank you for your courage and convictions, Commissioners Stein, Claypool, Butler, Ruttledge and Feder.

The law that created the commission included no requirement that Congress vote on the commission recommendations. Read the report at http://www.ltccommission.senate.gov/Commission%20on%20Long-Term%20Care%20-%20Final%20Report%20-%209-18-13.pdf. Talk to your members of Congress. Your future health and quality of life depends on it!

Posted: October 6th, 2013 | No Comments »

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