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

Pam is a 36-year old woman who lives in a large urban area in the Midwest. Until recently she was employed as a computer programmer; she was let go because of layoffs at the business and because of some of the complications she experiences due to cerebral palsy (spastic type) that affected her work performance. Over the past several years, her ability to efficiently operate an adapted computer keyboard and use her wheelchair have declined due to the loss of muscle flexibility. She also has an increasingly difficult time independently completing many activities of daily living including dressing, making meals for herself and eating, and getting safely from place to place in the community. The muscle tightness has also made it difficult for Pam to sleep well and it causes her a great deal of pain. She has become susceptible to upper respiratory tract infections, which at times have resulted in pneumonia.

For many years, Pam attempted to navigate the health care and social service systems on her own with limited success. She had several different primary care physicians, none of whom appeared to take very seriously her pain and increasing mobility limitations. The professionals who provided “support” would neither prescribe the medications needed for pain relief nor seriously consider alternative methods of treating her decreased flexibility in a manner that improved her functional abilities and lessened discomfort. In addition, with her increasingly limited mobility and independence she has had to seek assistance with a number of daily tasks. She tried to find assistance on her own, but did not know where to look. Her research led to organizations that promised to address one or two of her multiple concerns, but she could not find one resource to address all of her medical and other support issues.

Two years ago, Pam finally found someone who could help her navigate these complex systems. She joined an agency that provides care coordination for all of her health care and social service needs. Through her care coordinator, Pam found a primary care physician who not only understands her disability, but is a resource for assisting her to effectively deal with her other medical needs. Her care coordinator has assisted Pam in obtaining an appropriate wheelchair that meets her unique needs, wrist braces, adaptive equipment for her computer, a personal care attendant (PCA), and a variety of other supports. Pam was also introduced to a support group that specializes in her disability, providing a means for emotional support and information sharing. In addition, her care coordinator makes sure that she has transportation for clinic visits and provides telephone triage of health concerns before they become major issues that might result in hospitalization or the need for long-term treatment. If she does not get the answers she needs from health care and other service providers, Pam’s care coordinator is available to serve as her advocate with the goal of assisting Pam to more effectively advocate for herself. Today, Pam is receiving the health care and other supports she needs to reduce her pain and increase her functional abilities and independence. She has just begun exploring additional assistive technology that will enable her to be employed again.

Pam is a composite of a number of individuals we have met, and her story is typical of their need to navigate the health care system along with other supports and systems in a way that addresses complex, ongoing medical needs in the context of a whole life. One strategy that is holding out promise for making the navigation process easier and more effective is care coordination.

From Case Management to Care Coordination

What is care coordination and where has the idea come from? Case management has been used in the disciplines of nursing, social work, and public health since the early 1900s. The evolution of managed care organizations in the 1990s, however, precipitated the widespread use of this approach throughout health care, insurance, and social service settings. Across the years, case management has been characterized by supervision or oversight of care or supports, monitoring of the utilization of high-cost/high-use consumers of services, and employment of a medical model for coordinating authorized services within a single organization that delivers care. Although case management appears to meet the needs of many individuals with acute, episodic conditions, this approach is not necessarily promising as a strategy for persons with multiple and chronic conditions.

New paradigms are needed that more effectively address the needs of persons with disabilities and/or chronic illness and the effects of multiple health-related conditions on their lives. In addition, the necessity of close coordination between primary care physicians, medical specialists, and other human service supports (e.g., housing, transportation, childcare, vocational supports) needed by this segment of the population must be considered. The Chronic Care Model developed by Dr. Ed Wagner (ICIC, 2004) supports the need for care coordination, rather than case management, for individuals with multiple and chronic conditions. Proponents of the model believe that persons with complex, chronic conditions are best served when support systems consider all essential elements critical to persons leading a high quality of life. But what exactly does care coordination involve?

Description of Care Coordination

The specifics of this approach to coordinating supports for persons with complex health care and other needs must differ depending upon the unique needs of each individual. Generally, however, it is the responsibility of the care coordinator to ensure effective communication and information exchange within and between organizations including health care providers, social service providers, and state and county government agencies, resulting in high quality care and support for the individual with complex health care and other needs. Care coordinators must therefore have knowledge of and be able to work within a variety of different systems, bringing them together to create a seamless set of supports. Individuals serving in this role, for example, may assist persons with disabilities and/or chronic illness to find appropriate housing, gain access to reliable transportation, and locate primary care physicians who understand their unique health care needs. The role of a care coordinator also extends to ensuring that the individuals they serve are attentive to their own health care and other support needs, and use available supports in a cost-effective manner. For example, a care coordination agency may offer 24-hour phone contact for use by those it supports when they need immediate evaluation of health concerns to ensure that illnesses and other conditions are attended to promptly and appropriately, reducing the need for emergency room care or hospitalization.

Care coordinators may work within an organization specifically established to provide care coordination, or they may be employed within a health care, disability service, or social service agency. They are often social workers or nurses by training. That professional training, however, often does not adequately prepare them for their roles as coordinators. Most learn how to effectively serve in the care coordinator role through “on-the-job” training. One of the inherent challenges of the care coordination role is that, in order to be most effective, coordinators must view themselves not as advocates for the system within which they may work, but rather, for the persons with disabilities and/or chronic illnesses whom they support. A care coordinator for example, may need to assist a person with a disability to document the need for durable medical equipment and then help ensure that the person receives the funding to purchase the equipment. Serving in such a role, of course, has the potential to create conflict between the care coordinator, the organization that employs him or her, and the agencies that provide direct supports to the person. Such situations can present care coordinators with significant challenges that can be best resolved only if those serving in this position keep first and foremost in mind their primary responsibility to serve and support the persons with disabilities for whom they work.

Another aspect of the coordinator role that may be challenging is to advocate only when necessary. Coordinators are to support persons with disabilities to develop and refine their own personal advocacy skills so that they experience greater self-determination and independence and, over time, require less support from their care coordinator.

In Hawai’i, we are aware of the health disparity issue and are actively seeking resources to begin to answer the questions posed above. One of the areas we’re addressing is ensuring that the data gathered through the Healthy Hawai’i 2010 project includes data on persons with disabilities across cultural groups. The questions and issues raised in this article are not relevant just to Hawai’i. There are individuals like Millie everywhere. There is a need to find ways everywhere to gather the data that will illuminate the relative roles of disability and culture, separately and in interaction, in health disparities that exist in this country, and then to shift health care practices accordingly.

Care Coordination Outcomes

The critical outcomes of care coordination include the following:

• Facilitation of access to a variety of medical and non-medical services that will assist individuals in meeting their health care needs and living the lives they choose in the community.
• Productive interactions between informed, activated patients and the multiple staff persons who provide them with services and supports.
• Prepared, proactive support teams that create environments in which consumers make progress toward positive functional and clinical outcomes.
• Monitoring of the quality of services and supports received by individuals.
• A level of flexibility that allows consumer direction of health care to the degree desired by the individual.
• A service model emphasizing development of new resources, linkages between existing service agencies, coordination of care, advocacy, and education of the consumers, providers, and funders of health care and social services.

Research documenting the achievement of these outcomes through care coordination practices is in its early stages. Preliminary studies conducted by the National Rehabilitation Hospital, however, show promising results (Palsbo et al., 2004). For the past two years, data has been collected from adults with physical disabilities who are Medicaid eligible and receiving services through a managed care organization that provides care coordination. Preliminary analysis of the data reveals that hospitalizations have been reduced by 50%, reducing health care costs and disruption to individuals’ lives. In addition, 89% of members reported higher levels of satisfaction with their health care services in the year after enrollment compared to the year prior to enrollment, and 94% reported they were involved as much as they wanted to be in their own health care decision-making.