Participant-Directed Long-Term Services and Supports System

Most people want control over the long-term services and supports (LTSS) they receive regardless of their age or ability. They want to determine who will provide the services and when and where they will be delivered. Giving people this control enables them to maintain their dignity and maximize their independence. The participant-directed service model assumes that people can assess most of their needs, determine how best to meet them, and monitor the quality of services they receive. To do this, individuals must have adequate information.

For many years, publicly funded LTSS programs in the U.S. and other countries have allowed participants to direct their care. Programs exist in almost every state, take many forms, and cover multiple age groups and conditions. Current Medicaid law provides states with extensive options for funding participant-directed services. Nearly all states use this approach in at least one home and community-based services (HCBS) program. More than 1.5 million people receive HCBS through Medicaid or the VA self-direct their services. When designing these programs, states are responsible for balancing appropriate consumer safeguards with available public funds. They must do this while avoiding intrusive measures or diminishing individual choice and control. This approach may range from a consumer making all decisions to having an advocate or surrogate manage the services for individuals unable to do so. The underlying philosophy of participant-directed programs assumes that individuals are experts on their own service needs and that meaningful choice can be assured in all HCBS programs.

Participant direction typically includes either or both employer authority and budget authority. Employer authority allows participants to recruit, hire, schedule, manage, and terminate workers of their choosing, often family members, friends, or neighbors familiar with their needs and preferences. Budget authority grants even more decision-making control, allowing participants to set worker wages, and in some cases even to purchase goods and services that support their independence.

Research has demonstrated that models including budget authority lead to better outcomes for consumers, family members, and professional caregivers.

Studies of participant-directed services programs have found that:

• participants' primary family caregivers reported significantly less physical, emotional, and financial strain compared to caregivers of non-participants;
• caregivers of participants experienced lower rates of adverse health effects and greater satisfaction with life;
• the programs significantly reduced unmet needs for personal-assistance services with participants experiencing positive health outcomes and improved quality of life;
• misuse of Medicaid funds or abuse of consumers did not occur;
• participant-directed programs need not cost more than traditional programs if states carefully design and monitor them; and
• workers hired directly were twice as likely as home-care agency workers to report satisfaction with their pay.

These programs ensure choice and control for participants. By allowing individuals to hire relatives, friends, and neighbors to provide services, these programs also expand the LTSS workforce. This is especially the case in rural areas that are underserved by traditional home-care agencies.

However, many paid caregivers in such programs would not otherwise be working in the LTSS field. Responsibility for ensuring they are qualified and competent needs to be shared among the participant, the state agency, and the family.