Participant-Directed Long-Term Services and Supports System

Background

Most people want control over the long-term services and supportsLTSS encompasses a broad range of assistance with activities of daily living and health-related tasks for people with functional limitations caused by physical or mental impairments. LTSS may be delivered in institutions or in a person’s home or a residential care setting. (LTSSLTSS encompasses a broad range of assistance with activities of daily living and health-related tasks for people with functional limitations caused by physical or mental impairments. LTSS may be delivered in institutions or in a person’s home or a residential care setting. ) they receive regardless of their age or disability. 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 are capable of assessing most of their needs, can determine how best to meet them, and can monitor the quality of services they receive. However, to do this, individuals must have adequate information.

For many years publicly funded LTSSLTSS encompasses a broad range of assistance with activities of daily living and health-related tasks for people with functional limitations caused by physical or mental impairments. LTSS may be delivered in institutions or in a person’s home or a residential care setting. 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 MedicaidA joint federal/state program that provides health care and LTSS. However, to qualify for Medicaid LTSS, people must have extremely low assets and income, or they have to “spend down” most of their assets. 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 (HCBSLong-term services and supports provided in individuals’ homes or in community settings, including adult day services, assisted living and other residential care settings.) program. When designing these programs, states are responsible for ensuring appropriate consumer safeguards. Public funds must also be protected. They must do this while avoiding measures that are intrusive or diminish 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 HCBSLong-term services and supports provided in individuals’ homes or in community settings, including adult day services, assisted living and other residential care settings. programs.

Some participant-directed programs provide qualifying MedicaidA joint federal/state program that provides health care and LTSS. However, to qualify for Medicaid LTSS, people must have extremely low assets and income, or they have to “spend down” most of their assets. participants with monthly payments. With those payments, they can choose, manage, and pay for their own services. Or they can pay a supports coordinator and fiscal intermediary to do so. These programs also offer counseling to help consumers manage their services. Research has demonstrated that this model leads to better outcomes for consumers, family members, and professional caregivers.

Studies of participant-directed services programs have found that:

  • participants' primary family caregivers People who provide long-term services and supports to family members, relatives, friends, and neighbors. Some family caregivers are unpaid; others are paid through government programs, private funds, or long-term care insurance policies. 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 MedicaidA joint federal/state program that provides health care and LTSS. However, to qualify for Medicaid LTSS, people must have extremely low assets and income, or they have to “spend down” most of their assets. 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 A range of services provided in the home, including health care, personal care, and supportive services. 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 LTSSLTSS encompasses a broad range of assistance with activities of daily living and health-related tasks for people with functional limitations caused by physical or mental impairments. LTSS may be delivered in institutions or in a person’s home or a residential care setting. workforce. This is especially the case in rural areas that are underserved by traditional home-care A range of services provided in the home, including health care, personal care, and supportive services. agencies.

However, many paid caregivers in such programs would not otherwise be working in the LTSSLTSS encompasses a broad range of assistance with activities of daily living and health-related tasks for people with functional limitations caused by physical or mental impairments. LTSS may be delivered in institutions or in a person’s home or a residential care setting. field. Responsibility for ensuring they are qualified and competent needs to be shared among the participant, the state agency, and the family.

PARTICIPANT-DIRECTED LONG-TERM SERVICES AND SUPPORTS SYSTEM: Policy

PARTICIPANT-DIRECTED LONG-TERM SERVICES AND SUPPORTS SYSTEM: Policy

Consumer choice

Long-term services and supportsLTSS encompasses a broad range of assistance with activities of daily living and health-related tasks for people with functional limitations caused by physical or mental impairments. LTSS may be delivered in institutions or in a person’s home or a residential care setting. (LTSSLTSS encompasses a broad range of assistance with activities of daily living and health-related tasks for people with functional limitations caused by physical or mental impairments. LTSS may be delivered in institutions or in a person’s home or a residential care setting. ) program participants who want to purchase and direct their services should have the option to do so if they are able. In the event they are unable to direct their care on their own, they should be entitled to appoint a representative to do so. A decision on whether an individual can direct their own care should be determined through a conflict-free assessment process.

Participant-directed programs should be flexible enough to allow consumers to perform certain care-management tasks themselves and to receive assistance with other tasks.

Emergency procedures and funds should be established to allow people to return to traditional agency-directed home and community-based services, funded by MedicaidA joint federal/state program that provides health care and LTSS. However, to qualify for Medicaid LTSS, people must have extremely low assets and income, or they have to “spend down” most of their assets. or other sources if they find they cannot manage their own care.

States should not require home-care A range of services provided in the home, including health care, personal care, and supportive services. consumers, even if they are able to do so, to contract and pay directly for and manage their own services and supports.

Consumer protections and education

Individuals who self-direct their services should have the same protections regarding quality of care and access to appeal procedures as do other participants of MedicaidA joint federal/state program that provides health care and LTSS. However, to qualify for Medicaid LTSS, people must have extremely low assets and income, or they have to “spend down” most of their assets.-funded LTSSLTSS encompasses a broad range of assistance with activities of daily living and health-related tasks for people with functional limitations caused by physical or mental impairments. LTSS may be delivered in institutions or in a person’s home or a residential care setting. .

Federal and state policymakers should ensure the safety of individuals in participant-directed LTSSLTSS encompasses a broad range of assistance with activities of daily living and health-related tasks for people with functional limitations caused by physical or mental impairments. LTSS may be delivered in institutions or in a person’s home or a residential care setting. programs through strong oversight.

Participant direction programs should include timely grievance and appeal procedures for consumers dissatisfied with or denied any services.

Procedures should be in place to ensure adequate backup workers in the event that a home-care A range of services provided in the home, including health care, personal care, and supportive services. worker does not show up.

Participant-directed services and supports should include guidelines and standards for care.

States should conduct semi-annual reviews of the quality of care and the maintenance of each participant's health and functional status. Those reviews should include the status of family caregivers People who provide long-term services and supports to family members, relatives, friends, and neighbors. Some family caregivers are unpaid; others are paid through government programs, private funds, or long-term care insurance policies. when appropriate.

Education and training for participant-directed models should include:

  • counseling, as requested, to help people arrange for services and maintain financial records (inability to manage financial aspects of participant-directed care should not prevent program participation);
  • adequate language access and consumer education that targets diverse communities to provide information on safety and employment, and on accessing available LTSSLTSS encompasses a broad range of assistance with activities of daily living and health-related tasks for people with functional limitations caused by physical or mental impairments. LTSS may be delivered in institutions or in a person’s home or a residential care setting. resources and referral services; and
  • education for service providers to help them transition to new models of care.