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

One of the greatest challenges in health services research and policy is devising an appropriate delivery system for the most expensive health care users. In any given year, about 20% of the insured population in the U.S. incurs 80% of the health care costs. This 20% is comprised of two groups of people: those with non-systematic risk, who have one-time acute care needs (e.g., pneumonia, broken bones), and those with systematic risk. Those classified with systematic risk are people with long-term chronic needs, for example people with diabetes, heart/lung abnormalities, cerebral palsy, epilepsy, Fetal Alcohol Syndrome, and other complex medical conditions or disabilities. Managed care organizations (MCOs) are successful at controlling costs and providing preventive and acute care for the people with non-systematic risk. They are so successful that “unmanaged care” for the general population is a thing of the past in private sector insurance. In contrast, the results of the managed care experience for people with systematic risk is mixed. Some MCOs have tackled two subgroups of people with systematic risk: frail and nursing home eligible elderly, and, more recently, people with prevalent chronic conditions such as diabetes, asthma, or chronic obstructive pulmonary disease (COPD). Studies suggest that at least some MCOs are successfully providing quality, cost-effective care for these populations. This is not the case for the subgroup of people with disabilities and other complex medical needs.

Most states do not include children and adults with disabilities in Medicaid managed care programs. Historically, state legislators and disability activists have feared that the financial incentives inherent in MCOs designed for people with nonsystematic risk will lead to undertreatment, restricted access to services and providers, and poor care quality. These fears appear to be realized when one looks at managed care utilization data on people with disabilities, as well as the results of focus groups and interviews (Kroll & Neri, 2003; Palsbo et al., 2004; Scheer et al., 2003). Yet, in theory, organized delivery systems should be well-suited to arranging care for people with disabilities and other complex medical needs. When people with disabilities are asked to design the ideal health care system, they describe something that sounds very much like an MCO (Kroll & Neri, 2003; Palsbo et al., 2004; Scheer et al., 2003). Six desired attributes consistently rise to the surface:

• Comprehensive and flexible benefits tailored to people with disabilities and other complex medical needs.
• Timely access to knowledgeable, high quality physicians.
• Integrated care management teams in constant communication with each other and the person with a disability or other complex medical needs.
• Financial incentives aligned with providing high quality care.
• Live at home when medically appropriate.
• A single person who assembles resources and advocates for the participant.

Thus, our challenge: How can we design a health care delivery system that takes the best attributes of MCOs and successfully adapts them to provide high-quality, cost-effective care for people with disabilities and other complex medical needs? Several disability organizations and state Medicaid programs are answering this question through pilot programs offering comprehensive service coordination.

Comprehensive Service Coordination Pilot Programs

At least 10 states are piloting comprehensive service coordination programs for Medicaid adults with disabilities, including Florida, Massachusetts, Minnesota, New Mexico, New York, North Carolina, Oregon, Vermont, Wisconsin, and Washington, as well as the District of Columbia (Palsbo & Mastal, 2004; Rosenbach & Young, 2000). These pilot programs are a new breed of social services delivery system. We suggest calling them Comprehensive Service Coordination Organizations (CSCOs) to describe the medical and social services domains they encompass, as well as the various sources of funding.

In 2004, we visited seven pilot programs for adults of working age with physical or behavioral disabilities. Each is unique, with different target populations, financial incentives, missions, and staffing. Despite these differences, they have many similarities. These include:

• Using advance practice nurses, general and specialized registered nurses, and social workers collaborating as teams.
• Coordinating medical and behavioral health services.
• Coordinating social and life services (housing, transportation, personal care assistance, etc.).
• Emphasizing patient-centered, planned health and life care.
• Developing a carefully selected provider network.
• Creating a culture of deep commitment to partnering with the individual so that each moves beyond day-to-day management of the consequences of disability and participates in higher-order life activities such as personal relationships, parenting, community involvement, and employment.
• Being dedicated to improving the quality of care and services.

At all sites, about 60% of the participants have behavioral issues as a primary or secondary disability. Each site has had to grapple with integrating physical, behavioral, housing, and support services. Most sites team an advance practice nurse with registered nurses and a social worker. The advanced practice nurse facilitates communication across diverse providers, assembles and manages meetings among interdisciplinary teams of practitioners, and develops a comprehensive health management plan. The advance practice nurse, depending on state law and organizational policy, also has considerable authority to prescribe medications and treatment. Generally, the teams meet regularly, discuss each beneficiary’s needs, and authorize the appropriate services such as medical supplies or equipment. At least one person on the team makes routine home visits.

Another common feature is that nurses often accompany participants on physician visits. Participants report that their physician encounters are much more productive when a care coordinator nurse attends. The nurse serves as an objective intermediary and coach who knows what questions to ask and how to interpret the responses in ways the participant can understand. The nurse also helps the participant to follow through on the physician’s instructions, such as filling prescriptions or making appointments with specialists.

Most sites help their participants gain control over their lives by shouldering the burden of scheduling appointments and providing reliable transportation services. The programs also corral all of the physician orders and diagnostic testing values, often electronically. Some programs help the participants organize hard copies of appointment schedules, contact information, and physician orders in a binder or journal.

Written health management plans are the cornerstone of comprehensive service coordination. These are updated at least annually, and more often when needed. Each participant has substantial input into his or her plan. Interestingly, most programs have had to scale back their expectations of solving all problems at once to a pace that is comfortable for the participant. The participant has to be willing and ready to change their health choices. Several venues employ “harm reduction” as a long-term goal, rather than harm elimination (e.g., reduce the number of cigarettes rather than quitting smoking altogether). In addition, the programs have learned that some participants are not interested in having an active role in designing individualized coordination plans, while others are highly engaged in the process.

In all these programs, care coordinators have to bridge multiple social service agencies as they assemble the arc of services. A single participant may be working with a housing agency, child protection services, WIC, a community asthma intervention program, school personnel, and substance abuse treatment. This means the program has to coordinate with the other case workers to prioritize the issues to be tackled. Health-related issues may have to wait several months until more immediate concerns are resolved.

With so much going on in participants’ lives, most programs maintain an extensive medical-social electronic record for each participant. Some have invested heavily in flexible information system reporting tools. The databases allow the programs to stratify their participants into high, medium, or low resource users. In turn, this helps senior managers to allocate the case load equitably across the coordination teams. Many programs also use their database to identify formal quality improvement projects and monitor progress toward meeting quality improvement goals.

All sites proactively communicate with participants on a regular schedule, often through home visits. This function plays a key role in detecting social or medical problems before they prompt a crisis. Care coordinators provide a single point of contact available 24 hours a day every day. Most programs assign one team member as the primary contact person for the participant. This team member carries a cell phone and can be reached at any time. The assigned team member is a gate-opener to all the benefits and services described in the management plan.

Service Coordination Financing

One of the most striking differences across the seven pilot programs we visited is in financing service coordination. The programs have two different approaches. Some are paid a fixed fee per person per month, with slightly more money for more complex beneficiaries. The program funds coordination of services through savings achieved in shorter hospital stays, deinstitutionalization, and medical stabilization/early interventions. Several sites enroll dual eligibles under Medicare waivers, and are paid almost three times as much for their enrollees as other Medicaid managed care plans receive for non-frail beneficiaries.In this financing model,the financial incentives are clearly aligned with keeping the participant as healthy as possible.

In the other financing model, program sites are housed in community health centers or primary care coordination model programs. The financial incentives are comparatively cloudy since savings are realized at the county or state level rather than the organizational level. Most of these sites fund their coordinators out of grants.

Is Service Coordination “The Answer?”

Participants in the pilot programs are uniformly enthusiastic about service coordination. In our interviews, they have told us, “This plan saved my life”; “I’m in charge of my health instead of my health being in charge of me”; “I’m much happier”; “I know what’s going on when I go to the doctor”; and “I get the services and supplies I need, when I need them.” These statements align with published studies reporting high satisfaction with care coordination programs geared to children with special needs (Toce & Collins, 2003), people with severe mental disorders (Balsera et al., 2002), neurologically impaired patients (Bennett et al., 1997), and people with spinal cord injury or AIDS (Master et al., 1996), among others. Inversely, we and others have found that lack of care coordination is associated with dissatisfaction with their health care (Gehl, 1993; Hill & Woodridge, 2003; Palsbo et al., 2004).

Physicians participating in the pilot programs are also enthusiastic. They support the programs because they see improvement in their patients and because they know the coordinators will help the patients follow through on referrals, prescriptions, and other necessities. As they’ve told us, “We found that the ability to get equipment, supplies and specialized beds to people really made a big difference”; and “It makes my life and their lives much easier. My patients with complex medication regimens are much healthier because they have help staying on track.”Physicians also appreciate having a single person (the coordinator) who knows everything going on with that patient and community resources that might be available.

Currently, there is no definitive published study that service coordination is cost-effective. Several analyses are underway and Medicare will start a study in 2005. In the research that does exist, several studies suggest coordination of services leads to a short-term increase in total expenditures from social programs as the coordinator steers the beneficiary to services he or she previously did not use. For example, secondary analysis of National Health Interview Survey Disability Supplements found that school-aged children with disabilities and poor psychosocial adjustment were more likely to access mental health services if they had a health professional involved in care coordination, increasing total costs to public programs (Witt et al., 2003). There are other hints that service coordination could culminate in monetary savings. Master et al. (1996) analyzed a capitated care coordination program for adults with spinal cord injury or late-state AIDS; they found that the covered costs (that is, not including the care coordination costs) for Medicaid beneficiaries were 91% of the fee-for-service population, illustrating the savings that can be achieved by preventing long hospitalizations.

Conclusion

Based on our experience with the pilot programs, comprehensive service coordination appears to be a promising approach for people with disabilities and other complex medical needs. It holds the promise of maximizing the quality of health and life for individuals receiving services. For providers it offers a way to enhance their delivery systems. And for payers it may have the potential to use fiscal resources more effectively.