Impact Feature Issue on Enhancing Quality and Coordination of Health Care for Persons with Chronic Illness and/or Disabilities

Self-Direction and Accountability in Health Systems for People with Disabilities


William D. Clark is Director, Division of State Program Research, Office of Research, Development, and Information, Centers for Medicare and Medicaid Services, Baltimore, MD.

The health care delivery environment with which we interact as consumers is continuously changing. The Medicare Prescription Drug, Improvement, and Modernization Act of 2003 (MMA) represents a significant health reform milestone that defines important changes in the Medicare program, including the addition of outpatient prescription coverage through pharmacy plans, new coverage expansion in prevention screening services, and significant changes in the way that Medicare Advantage health plans operate. These changes and many others in the law will, over the years ahead, have an impact on almost all Americans in one way or another. These changes in Medicare will also affect how Medicaid and other State programs will operate and the impact they will have. In addition, Medicaid has been targeted for reform in the near future.

This article poses questions about accountability and control that might be asked by consumers, providers of care, and governments responsible for the administration of Medicare and Medicaid. It then describes how two demonstration initiatives serving people with disabilities in two Midwestern states offer alternative models of health care delivery that serve as small-scale templates of reform even within large nationwide reforms that are to be implemented. These first-of-their-kind health plans are available for people eligible for Medicaid and Medicare, and they integrate all the benefits covered by Medicaid and Medicare while employing a variety of strategies to promote self-directed services for their members.

Questions of Accountability and Control

In order to deliver effective health care and support services, human needs must first be identified. Then, systems of care and support must be flexible enough to meet those needs to the greatest extent possible with the resources that are available. In other words, an important characteristic of optimally- designed health care systems is for consumers to be able to seek the care they need, when they need it, with confidence that, whatever their need, a way will be found to work within the system and with care partners to make the best arrangement to fulfill their needs.

Step by step, our health care system is responding to consumers’ desires to control and direct either a part, or all, of their health care and support services (Mahoney et al., 2003). This differs from the paradigm in which consumers are expected to be “patients.” While consumer involvement is especially evident in the principles for independent living among people with disabilities and others, consumer choice is now further embodied and promoted by the President’s New Freedom Initiative and the congressionally mandated system change grant activities for states. Health Savings Accounts, also mandated by the MMA, are touted as yet another form of health care financing in which participants are provided maximum flexibility to direct and arrange for their individual health care needs. The independent living principles and these other examples might all be considered as potential answers to a question asked by consumers: “How can I do the best I can to be in charge of the services that I need?”

However popular concepts of self-direction may become, many people do not desire to pursue this option. Not everyone wants to assume responsibility for making these choices or is necessarily equipped to assume the responsibility for directing their own health care and/or support services. Just as the provision of health care can foster consumer dependency and absence of control, imposing self-direction upon consumers who don’t want to or can’t assume responsibility would seem equally unbeneficial. Therefore, in an era of increasing interest in self-directed care, providers of care must continue to be responsive to meeting the needs of those who do not participate in these arrangements. Under these conditions, care providers attempt to both arrange and provide services while doing their best to inform and educate consumers and their caregivers.

Financing for most fee-for-service insurance and out-of-pocket arrangements is unlikely to include payment for the time and involvement of providers seeking to educate and inform consumers. Furthermore, providers are often not well organized to work across medical and human service disciplines to assure that care is both coordinated and effective. Simply put, people working in all the various venues involved with health care and support services often appear to have difficulty understanding the role of others involved in meeting a particular consumer’s care needs and communicating with each other.

Providers must be knowledgeable about and accountable to individual program requirements according to various payment streams. They often face frustrating limitations because individual program coverage and eligibility parameters may not quite fit a particular consumer’s needs or because a particular service or piece of equipment may not be determined to be a medical necessity by one third party payer or another. Given the responsibilities that fall to providers of care as they seek to provide the best quality of service, providers may ask: “How can I provide the best care for people requiring complex medical and support services when I am only accountable for limited, specialized, and clearly defined services and responsibilities?”

Payers operate under the authority of Federal, State and private insurance laws and regulations. They must implement programs under requirements that may change depending on the direction of legislative initiatives. Medicare and Medicaid have been constantly changing ever since they were enacted in 1965. It takes time to change the way these programs are implemented. Meanwhile, the core functions of program administration and making provider payments must always proceed uninterrupted. A payer may ask: “How can I make sure that consumers get the care they need from my program, assure that the services provided are of good quality, and work effectively with provider partners while making timely and appropriate payment for the work that they do?”

Health care reform through legislation, such as the MMA, is perhaps the most important way to implement big changes in health care delivery. Demonstration initiatives sponsored by the Centers for Medicare and Medicaid Services and States also provide opportunities for changing the way consumers obtain needed care through these Federal and State programs, albeit on a smaller scale. Two such initiatives – the Minnesota Disability Health Options and the Wisconsin Partnership Program – are pilot coordinated care plans designed to provide people with disabilities all the covered benefits of both Medicare and Medicaid under one integrated model of care with minimal out-of-pocket costs for members. Consumers enrolled in these unified health plans participate in health care delivery models that offer accountability for the quality of care being delivered. Yet, they are designed so that members have the option to self-direct their care, especially personal care attendant (PCA) services. Three innovative plans under these initiatives are profiled in detail below: UCare Complete/AXIS, the Community Living Alliance, and the Community Health Partnership.

UCare Complete/AXIS

Operating in the Minneapolis/St. Paul metropolitan area, UCare Complete/AXIS is a coordinated care plan offered under the Minnesota Disability Health Options program. It combines the health plan expertise of UCare, with the care management expertise of AXIS in serving people with physical disabilities. Members are Medicaid recipients with physical disabilities ages 18-64. All hospital, physician, pharmacy, long-term institutional care, and community-based services are covered by the plan. Each member participates as part of a care coordination team in developing their own plan of care. Approximately 50% of all members use PCA services. AXIS works with each member to assess their health care needs in determining and authorizing the amount of PCA service to be provided. UCare contracts with home care agencies or a PCA Choice agency for provision of PCA services.

Less than 10% of PCA service users in the plan choose the self-management/direction of care. Working with People Enhancing People (PEP), a PCA Choice agency founded by AXIS members, UCare Complete/AXIS members are able to hire, schedule, and replace their own PCA workers (including some family members and friends). PEP itself is responsible for hiring the PCA workers, doing background checks, and assisting with training them. It also handles the administrative paperwork involved with hiring and paying the worker. It is able to offer educational scholarships as an added incentive for workers, and members may decide whether to use that option. The consumer-controlled PEP organization works with members to en- courage self-direction of their PCA care and bill UCare for the care provided.

Most UCare Complete/AXIS members with PCA needs do not select to self-direct PCA services. These members continue to benefit from the accountability of the UCare Complete/AXIS coordination of care and authorization for PCA services. PCA workers are provided through a liaison with home care agencies. Because it is a specialized coordinated care plan, AXIS is able to authorize higher wages for PCA workers, and more efficiently redirect Medicaid and Medicare funds that would have paid administrative overhead or hospital expenses, instead applying them across the spectrum of services.

Community Living Alliance and Community Health Partnership

The Community Living Alliance (CLA) and Community Health Partnership (CHP) are part of the Wisconsin Partnership Program, and use a similar approach to PCA services as the Minnesota pilot project, providing the full range of Medicaid and Medicare benefits and services under their coordinated care plans. While CLA serves members 18-64 years of age with disabilities, approximately 30% of CHP members have disabilities and 70% are seniors who are medically fragile.

In a way, these plans see 100% of members as having a level of self-direction, just not total self-direction. For example, members of CLA do not self-direct in the sense that out-of-pocket costs for personal care are authorized for them to recruit their own PCAs. Instead, PCAs get a list of members seeking attendants and call them. This is considered most efficient. The members meet with the plan’s personal care coordinator, a RN, to determine the type and hours of care needed and preferred time of day for care to be delivered. The CLA and CHP plans have the responsibility for recruiting, training, and supervising PCAs, and the plans perform the payment duties. Members have full authority to help recruit, make initial selection of PCA workers, and change the PCAs assigned to them.

Approximately 10-20% of members seeking to self-direct their PCA care have plan approval to use Paid Family Caregiver services. Both CLA and CHP work with their members to encourage self-directed care, and oversee how those services are provided. Nevertheless, most members with PCA needs prefer not to take on the additional responsibility that accompanies self-directed family caregiver services.


The Minnesota Disability Health Options and Wisconsin Partnership Program initiatives are unique coordinated care systems that offer the fullest extent of unified Medicare and Medicaid coverage under one umbrella as can be found anywhere in the United States. These plans encourage and prepare members to be involved with self-directed care, are sufficiently flexible to offer a range of options in relation to self-directed care, and have developed well-defined programs for those members who seek to self-direct. Because their funding is based on capitation payments and not tied to specific fees for discreet services, they also have far greater flexibility to offer services and benefits not covered by either Medicare or Medicaid, such as an air conditioner or other items that the plan determines are medically necessary to support member health and optimally independent functioning in their homes.

These demonstration initiatives do appear to provide answers to the questions posed by consumers, providers, and payers as mentioned above. Participants in these special coordinated care plans have the flexibility to take charge of, and assume responsibility for, self-directed care. Yet, these unified and integrated health plans are also providing and arranging services for the majority of their members requiring PCA services. Providers have the ability to meet individual needs without having benefit coverage decisions fall between the cracks of various program definitions. Payers, such as the States of Minnesota and Wisconsin and the Centers for Medicare and Medicaid Services, may be able to more effectively monitor these coordinated care plans as they are the single accountable health care provider for all the care received by beneficiaries. Through routine monitoring and oversight, payers can better understand and assure that the overall system of care is best suited to meeting the needs of program beneficiaries.

As our Medicare and Medicaid programs change in future years as part of large-scale national health care reforms, it is important to consider the unique models of health care delivery offered through these initiatives, and what they may have to offer individuals with disabilities, health care and support services providers, and payers in all areas of our country.


  • Mahoney, K., Meiners, M., Shoop, D., & Squillace, M. (2003). Cash and counseling and managed long-term care? Care Management Journals, 4(1), 18–22.