By Dennis Smith
Two hundred years ago last month, President Madison fled Washington as British troops invaded the Nation’s Capital. The White House and the Capitol were burned on August 24. A few weeks later, the bombardment of Baltimore would inspire Francis Scott Key to write the “Star Spangled Banner.” Because our young nation further removed itself from British and French influences, the War of 1812 has been called our second war for independence.
The push for independence is underway today in the long term services and supports (LTSS) part of Medicaid. One of the purposes of Medicaid is enable “… each State, as far as practicable under the conditions in such state, to furnish … rehabilitation and other services to help such families and individuals attain or retain capability for independence or self-care …”.
Properly understood, Medicaid is not “a” program, it is several programs serving different populations with very different needs. Most individuals enrolled in Medicaid today are healthy (children represent about half of the Medicaid population) and millions, in a better economy, would not be on the program because they would be enjoying a higher level of income. Millions are on Medicaid because of an unexpected turn of events – divorce, loss of a job, loss of income, or an unintended pregnancy. Many families who are on Medicaid today will not be on Medicaid five years from now.
But a senior citizen on Medicaid or an individual with a disability on Medicaid, will likely rely on the program for the rest of his/her life. The LTSS part of Medicaid is, in large part, about how and where that senior or individual with a disability will live. Approximately two-thirds of Medicaid spending is made on behalf of low-income seniors and citizens with disabilities. Approximately one-third of Medicaid spending is for LTSS, which goes nearly exclusively to people with disabilities and seniors.
As states struggle with the cost of their Medicaid programs and seek to improve how to deliver services, two models are emerging in the delivery of LTSS. One model relies on health plans to merge LTSS with acute care benefits, now referred to as “managed” LTSS or MLTSS. According to the June 2014 Report to the Congress on Medicaid and CHIP by the Medicaid and CHIP Payment and Access Commission (MACPAC), 16 states now employ a MLTSS model, covering 389,000 individuals. Earlier this month, the Center for Health Care Strategies released Key Attributes of High-Performing Integrated Health Plans for Medicare-Medicaid Enrollees, which describes “… a framework [that] can help guide states and health plans in defining essential elements for high-performing integrated health plans …”.
The other model allows the individual to “self direct” his/her LTSS services. The National Council on Disability (NCD) calls self-direction a “game changing strategy.” Last year, NCD released, The Case for Medicaid Self-Direction: A White Paper on Research , Practice, and Policy Opportunities, which, among other things, “… recommends strategies for improving the accessibility and quality of self-directed Medicaid services and supports.” As the report explains, self-direction has also been called consumer direction or participant direction. The role of the consumer may be as comprehensive as taking complete authority over a budget under which the consumer purchases LTSS goods and services and acts as the employer. At a minimum, self-direction means that the individual is allowed to hire and fire individuals who provide personal care services.
These two resources will be helpful to states, individuals, and their families as together they explore the future of their Medicaid LTSS programs. The LTSS part of Medicaid is about personal independence, liberty, and freedom as much as it is about access to medical care.
 Section 1901 of the Social Security Act