Most long-term services and supports (LTSS) consumers, regardless of age or disability, want to direct how they receive services, in order to maintain their dignity and maximize their independence.
A self-directed approach to services assumes that consumers can assess most of their own needs, determine how best to meet them, and monitor the quality of services received. 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.
For decades publicly funded LTSS programs in the US 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. Participant-directed programs often expand the available workforce, as many programs allow consumers to pay friends, neighbors, and family members. These programs can also broaden service delivery in rural areas and other communities that are underserved by traditional home-care agencies. However, because many 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.
Cash-and-counseling programs are one type of participant-directed LTSS delivery. These programs provide qualifying Medicaid beneficiaries with monthly payments; individuals then choose, purchase, and manage their own care or pay a care manager. They also offer counseling to help consumers manage their services. Studies of cash-and-counseling programs have found that:
- primary 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. The caregivers also experienced lower rates of adverse health effects and greater satisfaction with life;
- cash-and-counseling significantly reduced unmet needs for personal-assistance services—participants experienced 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.
Current Medicaid law provides states with extensive options for funding participant-directed services (see this chapter’s section Expanding Home- and Community-Based Services).
Creating a Participant-Directed Long-Term Services and Supports System: Policy
Consumers should have the right to direct their own care unless, through a conflict-free assessment process, it is determined that they are unable to do so. In the event they are unable to direct their care, 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.
Consumers must be afforded all the same protections in terms of quality of care and access to appeal procedures as currently exist for consumers of Medicaid-funded LTSS.
Policymakers should ensure the safety of participants in participant-directed services and supports programs through strong federal and state oversight. Procedures should be in place to ensure adequate backup workers in the event that a home-care worker does not show up.
Standards of care
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 counseling
Participant-directed programs should include:
- 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;
- 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; and
- education for service providers to help them transition to new models of care.