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. 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. 

Some participant-directed programs provide qualifying Medicaid participants with monthly payments. With those payments, they can choose, manage, and pay for their services. Alternatively, they can pay a supports coordinator or 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 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. 



Consumer choice

All long-term services and supports (LTSS) program participants should have the option to purchase and direct their own services. If they need assistance to direct their care on their own, they should be entitled to appoint a representative to help them. 

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 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 Medicaid or other sources, if they find they cannot manage their own care. 

States should not require home-care consumers, even if they are able to do so, to contract and pay directly for and manage their own services and supports. 

States should offer participant-directed programs that provide the maximum flexibility for consumers to manage their own budgets, hire and fire their own workers, and direct their own services with minimal restrictions on which family caregivers can be hired and paid. 

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 Medicaid-funded LTSS. 

Federal and state policymakers should ensure the safety of individuals in participant-directed LTSS programs through strong oversight. 

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

Procedures should be in place to ensure adequate backup workers in the event that a home-care 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 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 accessing available LTSS resources and referral services; and 
  • education for service providers to help them transition to new models of care.