The number of people with disabilities participating in Medicaid-funded self-directed services has grown rapidly over the past decade. An inventory completed last year by a survey research team at Pennsylvania State University in conjunction with the National Resource Center for Participant-Directed Services found that every state has at least one participant-directed program in which enrollees exercise employer authority and 43 states have at least one program where enrollees exercise budget authority. At the time the preliminary results of the survey were tabulated, researchers had identified 298 programs providing self-directed services nationwide at an estimated FY 2010–11 cost of $8.0 billion. Included were 62 programs for veterans with disabilities sponsored and funded by the U.S. Department of Veterans Affairs. Approximately 810,000 individuals were participating in these programs.⁵⁴

Participation in self-directed HCBS, however, varies considerably from state to state and community to community. California, with 143 out of 1,000⁵⁵ people with disabilities participating in self-directed service programs, had the highest proportion of people with disabilities in the nation self-directing their services and supports. In contrast, the six states with the lowest enrollment levels had fewer than one adult with disabilities per 1,000 enrolled in self-directed HCBS. Indeed, nearly two-thirds of the adults using self-directed services nationwide were residents of California.⁵⁶

Clearly, the available evidence suggests that the potential for further growth in self-directed services, nationwide, is quite significant, which raises the following questions: What are the remaining barriers to expanding access to self-directed support options within the federal-state Medicaid program? And what can policymakers do to remove or minimize these barriers?

ISSUE #1: Support Worker Qualifications

Efforts to improve the quality of HCBS have, in some cases, worked at cross-purposes with self-directed services. For example, the central premise of self-direction, that participants set the required qualifications of personal support workers and use the resulting criteria to screen and select job candidates, may be abridged by state or local training and credentialing requirements for personal support workers that limit the number and types of job candidates available to people wishing to self-direct their services.

RECOMMENDED SOLUTION #1: CMS’ technical guide to designing and operating Section 1915(c) waiver requests affords states considerable latitude in accommodating their HCBS quality assurance provisions to self-directed services. The guide states that:

When the participant is the common law employer, responsibility for conducting necessary background checks devolves to the participant whenever a participant-selected worker is subject to such a check under state law. However, a FMS [Financial Management Service] or other entity may arrange for the background check on behalf of the participant. Under the Agency with Choice⁵⁷  model, the agency is generally responsible for conducting necessary background checks.⁵⁸

The CMS technical guide also makes it clear that, while the provider qualifications adopted by a state are applicable to all providers within a particular service category, a state "may establish additional staff qualifications based on [a self-directing participant’s] needs and preferences.… So long as the additional participant-specific qualifications do not contravene the qualification set [established by the state], they are permissible."⁵⁹  In others words, a state can tailor the qualifications of a personal support worker to the needs and preferences of an individual who chooses to self-direct her/his services and supports.

In planning self-direction initiatives, states should use the flexibility built into the HCBS waiver technical guide to circumvent potential quality assurance-related barriers to self-direction—whether such initiatives are pursued under Secretarially approved waivers (Section 1915(b), Section 1915(c) or Section 1115) or under applicable Medicaid state plan amendments (e.g., Section 1915(i), (j), or (k)).

ISSUE #2: Unionization of Personal Support Workers

Personal/home care workers are unionized in some states (e.g., California, Michigan, Oregon, and Washington). Generally, unionization has led to higher wages and improved benefits (including health insurance coverage for workers in some states), as well as better retention rates and an enhanced sense of professionalism among direct care workers. Some workers (including family members of participants), however, object to joining a union and all the obligations membership entails (e.g., payment of union dues, mandatory training, criminal background checks), thus limiting the potential employee pool available to individuals desirous of self-directing their services and supports.

A second concern expressed by some individuals receiving services is that the efforts of workers to gain increasing control over their conditions of employment and scope of work through collective bargaining will conflict with the ability of people with disabilities to direct and manage the delivery of the supports that they receive through self-direction. People are concerned that people with disabilities, particularly intellectual disabilities, are at an unfair advantage when negotiating the terms of employment and duties to be performed by the worker.

RECOMMENDED SOLUTION #2: Advocates of self-direction should collaborate with employee unions in the pursuit of common objectives, such as better wages and benefits, improved working conditions, expanded access to training and skill development, and enhanced public funding of self-directed services—all of which should contribute to higher employee retention rates and a more stable and professional workforce. States and other funding entities should develop guidelines for identifying the mutual roles and responsibilities of people with disabilities who are self-directing and the workers who support them. Such guidelines should be designed to ensure that the service delivery structure does not supersede the ability of people to manage and control the supports they receive.

Disability advocates and union representatives also should create a common framework for resolving disputes. A November 2011 agreement between several national disability organizations and a union representing more than 2 million public service workers outlined a set of principles to guide the development of such collaborative efforts. In the sensitive area of the recruitment of personal/home care workers by employee unions, the guidelines suggest that "… workers seeking to form a union and union staff who support them shall:

• Respect the privacy of the individual receiving support by not seeking information about the individual or the individual’s place of residence.
• Seek to contact workers at their own home and not at their employer’s home, unless that is also the worker’s home.
• After initially contacting workers, keep lists of those who wish to have further contact and those who do not. When workers and [self-direction program] participants share the same home, lists shall also note when the participant and worker have asked to have meetings in other locations.
• Clearly and promptly identify their name and affiliation with the union when contacting workers.
• Provide literature during home visits on worker rights and the rights of the individuals receiving services that relate to union activities, and that includes contact information for any further questions."

Oregon illustrates how a state can collaborate with a public employee union to improve opportunities for both personal care workers and people with disabilities who choose to self-direct their services and supports. In 2000, the citizens of Oregon approved a constitutional amendment creating a Home Care Commission, funded by the Department of Human Services, to improve services to frail elders and people with physical disabilities. The responsibilities of the commission subsequently were expanded to include home care and personal care services to people with DD, mental illnesses, and medically fragile children.⁶¹

The Oregon Home Care Commission has four major responsibilities: (1) to define home care worker qualifications; (2) to create a statewide registry of home care workers, (3) to provide training opportunities for home care workers and consumers of services, and (4) to serve as the "employer of record" for purposes of collective bargaining with home care workers paid with public funds.⁶² In its latter capacity, the commission represents the state in collective bargaining negotiations with Local 503 of the Service Employees International Union (SEIU), a union representing more than 20,000 home care workers in the State of Oregon, including 12,500 workers who care for seniors and people with physical disabilities and 7,500 workers who care for people with DD, mental health needs, and medically fragile children.⁶³

The commission is composed of nine members appointed by the governor to three-year terms, including five consumers of home care services and one representative each from the Department of Human Services, the Governor’s Commission on Social Services, the Oregon Disabilities Commission, and the Oregon Association of Area Agencies on Aging and Disabilities. Individuals electing to self-direct their home care services are empowered to screen, hire, and set the conditions of employment of their personal care workers, including hiring, disciplining, and dismissing such workers.⁶⁴

Since the commission assumed responsibility for negotiating collective bargaining agreements with the SEIU local, home care workers have achieved higher wages and significantly improved benefits. For example, workers logging more than 80 hours of service a month are entitled to health insurance coverage with low copayments under the current collective bargaining agreement.⁶⁵  Meanwhile, most observers agree that the quality of home care services has improved over the past decade as a result of a better-trained, fairly compensated work force.

Oregon also has an innovative Brokerage System which allows adults with Developmental and Intellectual Disabilities to have full control over their annual budgets to purchase necessary goods and support services. Under this system, individuals with disabilities have full authority to choose which services to purchase, who to hire and how much to spend. Many of the staff providing services through the Brokerages are not covered by the Home Care Commission. In 2010, legislation was passed to allow providers through the brokerage system to be organized. Negotiations are continuing between all stakeholders to ensure that workers are able to work for fair wages and benefits and have access to appropriate training without removing any control from individuals with disabilities to make choices about their own services. One key priority for the disability community is to ensure that individuals with disabilities maintain complete control over their budget, rather than being given vouchers for particular services which would erode their ability to direct their services.

ISSUE #3: Managed Care and Self-Direction

Unless a state establishes policies that allow self-direction to flourish within a managed care environment, the opportunities of people with disabilities to self-direct their own supports could be significantly curtailed once they are enrolled in MMLTSS programs.

RECOMMENDED SOLUTION #3: States operating or planning to initiate MMLTSS programs should ensure that individuals who choose to self-direct their services and supports are able to exercise effective control over their lives and the resources allocated on their behalf, without jeopardizing their health and safety. In particular, state MMLTSS policies should ensure that—

Service eligibility determinations are made by state personnel. States may contract for evaluation and recommendations for eligibility.  The MCO or state personnel, not the service providers, assess the service needs and develop the individual plan, and do so separately from service financing and delivery to avoid potentially serious conflicts of interests. This approach is consistent with statutory requirements governing the Balanced Incentive Program.

All plan enrollees, including those who choose to self-direct their supports, should receive conflict-free support coordination services.  In guidelines and regulations governing the Balanced Incentive Program, CMS has articulated the following core characteristics of conflict-free case management:

• Responsibility for providing case management services is separated from responsibility for the provision of direct services and supports;
• Case managers are not employed by an entity providing services;
• Case managers are not responsible for determining individual funding levels; and
• Persons performing evaluations and assessments or developing individual plans of care cannot be related by blood or marriage to the individual or any of the individual’s paid caregivers.

A number of avenues are available to ensure conflict-free case management, as explained in CMS’ Balanced Incentive Program Implementation Manual.⁶⁶

• MCOs enroll in their provider networks: individual support workers selected by the individual and/or by community support providers, and financial management entities that are experienced in assisting individuals who self-direct their LTSS, provided that such community agencies and independent support workers are willing to accept MCOs payment rates and operating requirements. The goals of self-direction will be thwarted if MCOs are not obligated to enroll support workers selected by self-directing individuals. Encouraging existing community providers to enroll in MCO networks, moreover, is an important step toward promoting continuity of services and maintaining critical interpersonal relationships as people with disabilities transition to MMLTSS plans.
• Individuals choosing to self-direct their services and supports have access to independent advocacy (ombudsman) services and retain the right to pursue grievances and appeals through established Medicaid channels, including appealing directly to the single state Medicaid agency and requesting a fair hearing. Given the highly individualized nature of self-directed support plans, it is particularly important that the rights of such individuals not be curtailed once they are enrolled in MMLTSS plans.
• Quality management policies and practices accommodate the special circumstances that apply when an individual is self-directing his or her services and supports. The aim of such accommodations should be to strike a reasonable balance between safeguarding the individual’s health and safety and respecting the person’s right to control his/her own life. Required safeguards should be based on individual circumstances rather than standardized provisions (e.g., training should be customized to the needs and aspirations of each person, rather than being applied uniformly across all program participants).
• Fair, equitable, and transparent methods are used in determining and adjusting individual budget allocations of people who elect to self-direct their LTSS.  Public resources are finite and, therefore, it is important that each plan enrollee receive sufficient funding to cover the costs of his or her essential support needs and nothing more.

The safeguards outlined above must be built into state operating policies and MCO contractual requirements to ensure that self-direction opportunities are fully supported and are not curtailed once individuals are enrolled in MMLTSS plans. The recent experiences of self-advocates and their allies in Wisconsin and New York underscore the nature of the risks involved.

ISSUE #4: Risk Management

In self-directed services, risk management is a critical ingredient in striking a balance between individual safety and personal choice and control. Managing risk is a process that involves (1) objectively assessing an individual’s exposure to potentially harmful situations, (2) developing plans to prevent such exposure, and (3) ensuring the capacity to respond quickly in a dangerous situation.⁶⁷

Various standardized risk assessment tools are currently in use, but, given the highly diverse capabilities and vulnerabilities represented within the population of people with disabilities, additional studies are needed to establish the validity and reliability of risk assessment instruments for specific subgroups, and institute effective policies and procedures for identifying roles and responsibilities within the service delivery system to plan and implement individualized risk management strategies and monitor compliance with such plans.

RECOMMENDED SOLUTION #4: States offering self-directed HCBS should establish and maintain risk management systems that include—

• Policies and procedures that clearly identify the roles and responsibilities of key actors within the service delivery system, including people with disabilities, their case managers/counselors/support coordinators, state or local support agency staff, and direct support workers;
• A well-defined process of identifying circumstances that could endanger the health, safety and well-being of self-directed participants and assess the probability of such occurrences;
• A procedure for discussing the implications of potential risky situations with self-directed participants;
• A plan to reduce or eliminate the possibility of potentially harmful situations and a plan for responding promptly if they occur;
• A process for protecting the rights of self-directed participants to assume risk and honor their decisions; and
• A system for monitoring implementation of risk management provisions contained in the individual service plans of self-directed participants.

CMS, in collaboration with the HHS Administration on Community Living, should underwrite the cost of a series of longitudinal studies of the components of effective risk management planning and execution for people with disabilities who are receiving community-based long-term services and supports. Among the subjects that should be examined as part of these studies are the instruments used in assessing risk among various subgroups of people with disabilities and capacity to pinpoint potentially harmful situations. In addition, attention should be directed toward avoiding the imposition by provider agencies of unjustified restrictions on individual choice and control and ensuring that participants have appropriate avenues to appeal such restrictions.

ISSUE #5: Financial Management Services

Medicaid law prohibits direct cash payments to recipients of HCBS waiver services and most state plan ervices.⁶⁸ As a result, FMS have become virtually ubiquitous in Medicaid-financed self-directed services.

A state may employ various FMS models, as explained in the Handbook for Developing Self-Direction Programs and Policies.⁶⁹  A state’s FMS design, operation, and oversight choices can have significant consequences for individuals who choose to self-direct their services, including potential violations of employment laws and serious disruptions in services and supports.

RECOMMENDED SOLUTION #5: States should carefully analyze alternative FMS models as they design support systems for Medicaid beneficiaries who choose to self-direct their services and supports. Such reviews should also examine the experiences of other states that have alternative approaches to organizing and delivering FMS. In addition, CMS should continue to offer states technical assistance in designing FMS programs through the National HCBS Quality Enterprise.

ISSUE #6: Costs and Outcomes

Large gaps exist in our understanding of the relationship between public expenditures and individual outcomes in both self-directed and agency-directed community services.

RECOMMENDED SOLUTION #6: The HHS ACL should spearhead a departmentwide effort to initiate a series of longitudinal studies of the costs and benefits of self-directed HCBS for people with long-term support needs. The primary purpose of these studies should be to elucidate the relationships among program design elements, service costs, and measurable outcomes for identified subgroups of LTSS users, thereby creating an empirical foundation for evidence- based practices in formulating and financing self-direction programs for frail elders, nonelderly adults with physical disabilities, children with severe chronic disabilities and illnesses, people with I/DD, people with severe and persistent mental illnesses, and people with traumatic brain injuries. ACL should draw upon the expertise and resources of the following other department units in designing and financing these projects: CMS; the Substance Abuse and Mental Health Administration; the Health Resources and Services Administration; the Agency for Healthcare Research and Quality; the National Institutes of Health; and the Centers for Disease Control and Prevention.