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Medicaid offering participant-directed long-term care services
To date, 240 programs with more than 800,000 participants offering participant-directed services as a delivery option in long-term care services have been located by the research team of Kevin J. Mahoney, a faculty member at the Boston College Graduate School of Social Work and director of the National Resource Center for Participant-Directed Services in Boston.
Participants in all of the 240 programs exercise employer authorities, such as hiring one's own worker, and/or budget authorities, where one can manage the entire budget involved in their health care, including hiring workers or purchasing goods and services that help maintain their independence in the community, according to Mr. Mahoney.
The programs offer home and community-based services that help people of all ages across all types of disabilities maintain their independence, says Mr. Mahoney, and determine for themselves what mix of personal assistance supports and services work best for them.
"The growth of these programs accelerated in the 2000s, as the findings of Cash & Counseling influenced changes in the Medicaid waiver application process," says Mr. Mahoney. "This made it easier for states to develop and implement participant-directed programs."
Mr. Mahoney adds that he is anxiously awaiting draft regulations from the Center for Medicare & Medicaid Services on the Community First Choice Option, a new state plan option to provide home and community-based services in Medicaid.
"We pray that they will allow participants significant flexibility in purchasing goods and services, even if they cannot use these funds to purchase expensive home modifications and assistive technology," says Mr. Mahoney.
Given the enhanced federal match, Mr. Mahoney says that it would be "a blow to participant direction" if the budget authority is not allowed to the full extent possible.
Participant direction is a major component of the new Community Living Assistance Services and Supports (CLASS) Act, notes Mr. Mahoney, which was passed as part of national health care reform.
"The CLASS Act has the potential to dramatically improve quality of life for millions of Americans with disabilities, by establishing a national, voluntary, long-term care insurance program that provides money to people who want to maintain their personal independence," says Mr. Mahoney.
Slow, steady increase
When Georgia first introduced participant-directed care into its waiver programs, the state experienced "high activity," says Catherine Ivy, deputy director of the Division of Medicaid's Aging and Special Populations Section.
Since that time, says Ms. Ivy, there continues to be a slow but steady increase in the use of the model. "The increase has been most prevalent in the waivers that serve younger individuals with disabilities and individuals with developmental disabilities," reports Ms. Ivy. "The interest among the older adult population has been stronger than we anticipated."
The entire long-term care service delivery system has become more participant-directed, says Ms. Ivy, as a result of the new cultural norm that began with this model of care delivery.
"The participant-directed model of service delivery has already resulted in many Georgia waiver participants becoming more astute consumers of long-term care services," Ms. Ivy reports.
Ms. Ivy notes that the model is fully integrated in Georgia, with participants engaged in traditional employer activities such as training, supervising, and managing their caregivers." "Our hope is that we are encouraging the development of savvy consumers of health care in general," she says.
Despite numerous challenges, many states have developed successful strategies for implementing consumer-directed long-term care service programs, according to an article, "New State Strategies To Meet Long-Term Care Needs," published in the January 2010 issue of Health Affairs.1
"Quite frankly, we were gratified, and somewhat surprised, that all 12 of the states that received cash and counseling replication grants succeeded in launching programs," says Pamela Doty, the study's lead author and a senior policy analyst in the Office of the Assistant Secretary for Planning and Evaluation in the U.S. Department of Health and Human Services in Washington, DC.
Four states received grants in the first Cash & Counseling Demonstration and Evaluation, notes Ms. Doty, but one dropped out prior to implementation and returned the unspent funds to the Robert Wood Johnson Foundation.
"That state could not go forward because, operationally, local county agencies had a great deal of autonomous control over the organization and delivery of Medicaid-funded community-based long-term services and supports," explains Ms. Doty.
After several large counties announced they would not participate, other counties pulled out, says Ms. Doty, and the counties that still wanted to go forward didn't have enough potential clients to meet caseload requirements for the demonstration.
"We thought something like this might happen in some of the replication states, so we were quite concerned that we might lose two or three states," says Ms. Doty.
Many moving parts
Innovation in Medicaid-funded home and community-based care programs usually requires multiple state agencies to work together, according to Ms. Doty. This is because Medicaid agencies typically delegate operation responsibilities for these programs to state units on aging, state developmental disabilities agencies, or agencies that focus on services to younger adults with physical disabilities or specific kinds of injuries, such as traumatic brain or spinal cord injuries, she explains.
These agencies, in turn, often delegate to regional or county agencies and to private, non-profit organizations, such as area agencies on aging, says Ms. Doty.
"In sum, there are many moving parts," says Ms. Doty. "That's even before taking into account the traditional services providers, such as home care agencies, adult day treatment centers, and so forth."
These traditional service providers are often for-profit entities that may fear losing business if Medicaid beneficiaries choose to self-direct their services and employ individual providers of aide services directly, adds Ms. Doty. Here are three trends in participant-directed care that Ms. Doty is seeing:
States are relaxing previous restrictions on family members becoming paid caregivers.
"The evidence in favor of relaxing restrictions goes beyond the positive findings associated with paying family caregivers in Cash & Counseling programs," according to Ms. Doty.
She refers to the findings of a July 2008 study, Analysis of the California In-Home Supportive Services Demonstration Program, sponsored by the Department of Health and Human Services' Office of the Assistant Secretary for Planning and Evaluation (ASPE).
Researchers compared outcomes program participants who employed non-relative personal care attendants or family members. "The study found positive results associated with employment of relatives, including employment of spouse and parents of minor children, as paid caregivers," says Ms. Doty.
States are continuing to add participant-directed services, primarily within their 1915(c) waiver home and community-based services programs.
Ms. Doty refers to the Washington, DC-based Westchester Consulting Group's 2001 inventory of Medicaid and other publicly-funded state-level programs offering self-directed services options, ASPE Consumer-Directed Support Service Program Inventory, which found 139 programs with an estimated 500,000 participants.
Managed care plans are including participant-directed services options.
"TennCare recently added Choices for Long-Term Care, which includes opportunities for self-direction," notes Ms. Doty.
1. Doty P, Mahoney KJ, Sciegaj M. New State Strategies to Meet Long-Term Care Needs. Health Affairs 2010;29(1):49-56.