Most people who need long-term services and supports (LTSS), regardless of age or disability, want control over which services they will receive, who will provide the services, and when and how they will be delivered. Giving people this control enables them to maintain their dignity and maximize their independence. To function properly, a participant-directed service approach requires that individuals have adequate information, are capable of assessing most of their needs, can determine how best to meet them, and monitor the quality of services they receive.
Current Medicaid law provides states with extensive options for funding participant-directed services, and almost all states use this approach in at least one home- and community-based services (HCBS) program. Programs should ensure appropriate consumer safeguards, protect public funds, and avoid measures that are intrusive or diminish individual choice and control. This approach may range from a consumer making all decisions to an advocate or surrogate managing the services. But the underlying philosophy presumes that consumers are the experts on their own service needs and that meaningful choice can be introduced into all service environments.
Cash-and-counseling programs are one type of participant-directed LTSS delivery. These programs provide qualifying Medicaid beneficiaries with monthly payments, which they can use to choose, manage, and pay for their own services, or pay a care manager to do so. These programs also offer counseling to help consumers manage their services. Evidence suggests this model leads to better outcomes for consumers, as well as family and professional caregivers.
Studies of cash-and-counseling programs have found that:
- primary family caregivers of enrolled cash-and-counseling program participants reported significantly less physical, emotional, and financial strain compared to caregivers of individuals not enrolled in the program;
- caregivers of individuals enrolled in the program also experienced lower rates of adverse health effects and greater satisfaction with life;
- cash-and-counseling significantly reduced unmet needs for personal-assistance services with participants experiencing positive health outcomes and improved quality of life;
- there was no misuse of Medicaid funds or abuse of consumers;
- cash-and-counseling need not cost more than traditional programs if states carefully design and monitor their programs; and
- workers hired directly were twice as likely as home-care agency workers to report satisfaction with their pay.
In addition to ensuring choice and control for individuals receiving services, these programs often expand the LTSS workforce—especially in rural areas that are underserved by traditional home-care agencies—by allowing individuals to hire relatives, friends, and neighbors to provide services. For decades publicly funded LTSS programs in the U.S. and other countries have given consumers the opportunity for self-direction. Programs exist in almost every state, take many forms, and cover a wide range of age groups and conditions. However, because many paid caregivers in such programs would not otherwise be working in the LTSS field, responsibility for ensuring that they are qualified and competent should be shared among the participant, the state agency, and the family. Requirements should ensure appropriate consumer safeguards, protect public funds, and avoid measures that are intrusive or diminish individual choice and control.
CREATING A PARTICIPANT-DIRECTED LONG-TERM SERVICES AND SUPPORTS SYSTEM: Policy
Ensuring consumer choice
Consumers should have the right to direct their own services if they so choose and if they are able. In the event they are unable to direct their care, as determined through a conflict-free assessment process, they should be entitled to appoint a representative to do so.
Consumers should have the option of purchasing or directing their own long-term services and supports (LTSS) using the public funds for which they are eligible.
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 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.
Ensuring 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 beneficiaries of Medicaid-funded LTSS.
Federal and state policymakers should ensure the safety of individuals in participant-directed services and supports programs through strong oversight.
Self-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 worker does not show up.
Participant-directed services and supports should include guidelines and standards for care.
There should be semiannual reviews of quality of care and maintenance of each consumer’s health and functional status. Those reviews should include the status of family caregivers where 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 LTSS resources and referral services; and
- education for service providers to help them transition to new models of care.