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The National Resource Center for Participant-Directed Services

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Housed at the Boston College Graduate School of Social Work, The National Resource Center for Participant-Directed Services (NRCPDS) is the only national center of its kind to assist states and other agencies or organizations that want to offer, or already offer, participant-directed services to people with disabilities. NRCPDS provides technical assistance, research, education, and training to both Medicaid and non-Medicaid funded programs.

This month on Key Feature, the staff at NRCPDS answers questions about their program and the concepts behind participant-directed services

Q: What is the mission of the National Resource Center for Participant-Directed Services (NRCPDS)?

A: The NRCPDS mission is to infuse participant-directed options into all home and community-based services by providing national leadership, technical assistance, education, and research, leading to improvement in the lives of individuals of all ages with disabilities.

Q: What is the concept of participant-directed services and how does it differ from a traditional agency model?

A: Participant-directed services are long-term care supports and services that help people of all ages across all types of disabilities maintain their independence and determine for themselves what mix of personal care services and supports work best for them. Participant-directed services are sometimes referred to as consumer-directed or self-directed services.

Although the traditional model of agency-provided personal assistance services works well for many people, others get little or none of the services they need and are authorized to receive. Home care agencies sometimes experience worker shortages and high staff turnover that make it difficult to meet participants’ needs. Home care agencies cannot always tailor their services to participants’ individual needs. Participants may not be able to get the services they need at the time they want them because agency workers generally do not work evenings or weekends.

In contrast to the agency model, participant direction provides participants with a flexible budget that enables them to hire (and fire) their own workers, who may be friends or family members. Participants may use their allowances to purchase items—such as microwaves, touch lamps, or lift chairs—that help them continue to live independently. Participants who don’t feel confident about making decisions on their own can appoint a representative—such as a family member or trusted friend—to make decisions with or for them. Participant-directed services are not intended to replace agency services. Instead, they provide an alternative to those who want one.

Q: What is the historical context of the participant-directed model?

A: During the 1990s, the Independent Living philosophy, disability rights activism, and the emerging self-determination movement for people with developmental disabilities along with positive research findings about participant-directed service outcomes began to influence advocates for older persons, federal policymakers, and program administrators. As early as 1993, self-direction options for HCBS were included in health care reform recommendations and proposed legislation introduced in Congress.

Part of this movement towards developing participant-directed options included a demonstration project. Funded jointly by the Robert Wood Johnson Foundation (RWJF) and the U.S. Department of Health and Human Services (DHHS), the Cash & Counseling Demonstration and Evaluation (CCDE) was launched in 1996 to test participant-directed services in Arkansas, Florida, and New Jersey Medicaid programs. The large majority of those who participated reported that it significantly improved the quality of their lives. Compared to those receiving agency services, Cash & Counseling participants’ had fewer unmet needs for care and their health outcomes were as good or better. The program also significantly improved the lives of their primary caregivers. And initial concerns about possible Medicaid fraud and abuse as well as adverse effects on participants’ health proved unfounded. Based on the encouraging results, Cash & Counseling programs were implemented in 12 more states with support from the funders of the original three-state CCDE.

In 2002, CMS released the Independence Plus waiver application to streamline approval for waiver programs offering self-direction. From 2004 to November 2005, CMS revised the §1915(c) HCBS waiver application to include self-direction options, which mainstreamed both employer and budget authority programs.

In late 2005, Congress passed the Deficit Reduction Act (DRA), which created several new Medicaid statutory authorities for self-direction, including one that allows states to offer budget authority to Medicaid State Plan personal care services participants without having to operate under the §1115 demonstration authority.

In 2010, the Affordable Care Act (ACA) improved options for self-direction in Medicaid and authorized a new voluntary social insurance, the CLASS program, with participant direction at the core.

Q: What have been the benefits of participant-directed programs?

A: Participant direction gives choice and control to the participant. You set the rules for how you’ll live your life, and if you’re dissatisfied with the service you’re getting, you can hire someone else. You have control over how, when, or by whom services are delivered. For example, if you prefer to get out of bed early then you can hire a caregiver who is available early to assist you. Participant direction also allows people to creatively make sure their needs are met. If someone would rather prepare meals on their own using a microwave instead of having someone cook for them, they can purchase a microwave. You’re getting the services, so you call the shots.

Research from the Cash & Counseling project provides some important insights into the benefits of participant direction. Evaluation results showed that:

  • Participant direction significantly reduced the unmet needs of Medicaid consumers who require personal assistance services;
  • Participants experienced positive health outcomes;
  • Quality of life for participants and their caregivers improved;
  • The program did not result in misuse of Medicaid funds or abuse of consumers; and
  • It proved to be a cost effective option; per member.

Q: What have been some of the obstacles for states to incorporate participant-directed model programs?

A: Some policymakers and program administrators have expressed concerns about program safety, fraud, and appropriateness for some participants. The extensive CCDE evaluation and replication program demonstrated that this program is safe, effective, and appropriate for participants of all ages with diverse disabilities. Program design features include checks and balances to prevent fraud and assure safe and effective services.

The NRCPDS has also developed training materials to help professionals move from a medical to an empowerment model, and toolkits to deal with initial resistance from traditional providers.

Programs that need help getting started on designing programs now have a comprehensive Handbook available to help them: http://www.bc.edu/content/bc/schools/gssw/nrcpds/tools/handbook.html.

Q: What is the future of participant-directed services?

A: Demand for participant direction is rising because people want control and independence. This makes participant direction a breakthrough for long-term care. There are several ways that participant direction is growing:

  • The DRA makes several new options for implementing a Cash & Counseling/Participant Direction program available to states. These options include: Section 1915(i), which creates a state plan option for home- and community-based waiver services; Section 1915(j), which creates a state option for Cash & Counseling; and the Money Follows the Person Rebalancing Demonstration.
  • Recent grant programs such as Community Living Programs (CLP) and Veterans-Directed HCBS provide new opportunities to develop participant directed programs.
  • Health Care Reform will provide new opportunities for people to receive participant-directed services on a large scale.

Q: Is there anything else you would like our readers to know about NRCPDS or participant-directed services?

A: We work to provide the latest information, research, and tools on participant direction. Materials are available on our website http://www.ParticipantDirection.org and updates are provided by signing up for our mailing list.