Abstract

Lack of sufficient accessible community-based health care services for individuals with developmental disabilities has led to disparities in health outcomes and an overreliance on expensive models of care delivered in hospitals and other safety net or state-subsidized providers. A functioning community-based primary health care model, with an integrated care management component, functioning in the general health care practice marketplace, is described and shown to address recent Surgeon General recommendations as well as evaluative criteria for availability, affordability, acceptability, and appropriateness of care. The model functions in both fee-for-service and managed care environments, including Medicaid managed care for individuals with developmental disabilities. Experience shows this model to be both scalable and replicable, resulting in positive health outcomes and increased patient satisfaction.

Barriers to quality primary health care for people with developmental disabilities persist, despite substantial changes in the larger field of developmental disabilities. Reichard, Turnbull, and their colleagues have conceptualized barriers to health care as affecting the availability, affordability, accessibility, and appropriateness of care and have reviewed the health care literature along these lines (Reichard, Sacco, & Turnbull, 2004; Reichard & Turnbull, 2004). They concluded that, in addition to needed improvements in these four areas, changes are also needed in the health care system overall (Reichard et al., 2004, p. 465). Similarly, the report from the Surgeon General's 2001 conference on Health Disparities and Mental Retardation recognized the need for creative health care financing and suggested that providers work toward developing alternative health care models that “test effects on health outcomes, for people with MR [mental retardation], of diverse models for providing health care services, service packages, and financing mechanisms” (U.S. Public Health Service, 2001, p. 10). Unfortunately, although literature reports are more plentiful on the training and availability of practitioners needed to care for people with developmental disabilities (cf. Minihan & Dean, 1990; Reichard et al., 2004), there are fewer recent reports on creative practice models for this population (cf. Ziring et al., 1988).

Our purpose here is to describe an updated model of health care practice that avoids many of the problems and barriers to care that have characterized earlier health care approaches with this population. Our experience suggests that some of these barriers were directly linked to structural aspects of the practice models and the ways in which states have funded them. In our view, the primary care service model described here, that includes a strong care-management component and takes advantage of Medicaid managed-care funding, represents a truly novel adaptation to a rapidly changing health care marketplace. This new model also suggests why traditional models, primarily state-funded health care settings for individuals with developmental disabilities, may not be sustainable in the future. In this article we present a specialized developmental disabilities clinical practice model that is rooted in the general health care marketplace in America and takes advantage of Medicaid managed-care program funds. Before describing this model in detail, we present an overview of the barriers to care that the model addresses and the health care systems context in which it flourishes.

Barriers to Care

Types of Health Care Barriers

Individuals with developmental disabilities continue to encounter barriers in accessing appropriate, high quality health care services, especially if they are Medicaid beneficiaries (Davidson & Somers, 1998a; Fisher, 2004; Minihan, Dean, & Lyons, 1993; Reichard & Turnbull, 2004; Voelker, 2002). Barriers to health care can be categorized into three general classes: those related to (a) the behavior or condition of the consumer, (b) the training or behavior of the health care provider, and (c) the organization and financing of the health care delivery system. Consumer barriers include difficulties in communicating symptoms, a lack of medical history information, a greater complexity of medical problems compared to the general population, and an inability to fully utilize the patient protections of informed consent or advanced directives (i.e., living wills).

Barriers related to health care providers include a lack of training or experience in managing certain types of health care problems in patients with developmental disabilities. These problems include chronic illnesses, such as poorly controlled seizures and mental illness, and an inability to coordinate care across systems of care or facilities (such as schools, residential programs, and employment settings). Although during the past 40 years, there have been significant improvements in the quality of training activities for health care providers, particularly for those serving children with developmental disabilities, problems remain. The Maternal and Child Health Bureau (MCHB) provides significant funding for the training of pediatric specialists in care for children with special health care needs. However, a comparable training infrastructure for practitioners serving adults with developmental disabilities does not yet exist and results in gaps in the information available to practitioners (cf. Minihan et al., 1993; Walsh, Hammerman, Josephson, & Krupka, 2000). Negative attitudes on the part of health care providers toward people with mental retardation or toward low Medicaid fee-for-service rates also constitute barriers to health care. For example, in one of the earliest consumer surveys on health care and developmental disabilities, Minihan and Dean (1990) reported that despite generous state (Massachusetts) Medicaid health benefits at the time, a fourth of their sample reported access problems due to reimbursement rates.

The third type of barrier, comprised of those related to the health care system, is often the direct result of deficient financing of the health care services that are used by persons with developmental disabilities. General system problems or inadequacies in health insurance programs lead to care problems in several areas, including primary care, specialty care, care coordination, dental care, pharmaceuticals, mental health care, rehabilitation services, and the availability of durable medical equipment.

These concerns are compounded by the complexity of the interface between the acute- and long-term care systems and the lack of coordination between them. Symptomatic of these problems is the frequent inability to implement an appropriate health care plan for people with developmental disabilities across all care settings (e.g., schools, residential programs, other community-based care settings such as foster care, and occupational or recreational programs). Additional barriers of this type include a lack of skilled direct care staff who can participate in implementing health care plans and excessive care coordination responsibilities due to inefficiency or redundancy of the human service system (Garrard, 1982; Kastner & Luckhardt, 1990; Kastner, Walsh, & Criscione, 1994).

Resulting Disparities in Care

These barriers compromise access to appropriate health care services for persons with developmental disabilities and lead to disparities in health outcomes for this population, which were highlighted in a report of the Surgeon General (U.S. Public Health Service, 2001):

Compared with other populations, adults, adolescents, and children with mental retardation experience poorer health and have more difficulty in finding, getting to, and paying for appropriate health care. These challenges are even more daunting for people with mental retardation from minority communities … [because] the multiple disorders associated with mental retardation are found disproportionately among low-income communities that experience social and economic disparities when they seek health care. Mental retardation compounds these disparities because many health care providers and institutional sources of care avoid patients with this condition. (p. xii)

To offset such health care barriers, the Surgeon General's Report (2001) sets forth a national blueprint for improvement, establishing six goals for health care services for this population: (a) integration of health care services into community environments, (b) increased research knowledge and understanding of the population, (c) improved health care quality, (d) increased training for providers, (e) effective financing, and (f) increases in the number of providers and access to them. Consideration of the barriers to care reveals that multiple factors can prevent the achievement of each goal. As a result, a variety of strategies must be employed simultaneously.

In this paper we argue that individuals with developmental disabilities need to be included in the community health care systems that exist in the larger community and serve most people in the general population. Furthermore, we demonstrate that through certain adaptations, medical practices specializing in care for individuals with developmental disabilities can be created that are able to flourish in typical community settings. For a growing number of Medicaid beneficiaries with developmental disabilities, this means making Medicaid managed-care work. We present a preliminary model of primary health care that operates within a Medicaid managed care environment, includes an aggressive health care management component, and creates a medical home for patients with developmental disabilities.

Systems Issues and Context of the Model

Care Settings

In our experience, barriers to quality health care continue to exist because few practical approaches to the reorganization and financing of the health care delivery system for people with developmental disabilities have been forthcoming. As a result, there are insufficient opportunities for trained practitioners to provide care or for willing practitioners to be trained. Instead of receiving health care through typical community-based physician offices, many individuals with developmental disabilities receive health care services from (a) specialty clinics, subsidized by state developmental disability authorities (e.g., Chicoine, McGuire, Hebein, & Gilly, 1994; Kastner, Walsh, & Drainoni, 1999; Pulcini & Howard, 1997; Ziring et al., 1988); (b) specialized grant programs (e.g., Birenbaum & Cohen, 1998); (c) traditional safety net providers, such as university-based hospitals or community health centers (Grogan & Gusmano, 1999; Sparer, Brown, Gusmano, Rowe, & Gray, 2002), or (d) directly from health care practitioners as a component of residential services (e.g., in ICF/MR facilities). Those who do receive health care from community practices typically do so through fee-for-service arrangements in the Medicaid and/or Medicare programs. These fee-for-service arrangements, especially Medicaid, are often inadequate because many practitioners do not participate due to low reimbursement rates. These are not new problems; observers have long voiced the concern of poor access to primary health care for this group (e.g., Garrard, 1982; Kastner, 1991).

To some extent, professionals in stand-alone specialty centers for this population (often associated with hospitals, universities, or developmental centers) address the goals in the Surgeon General's (2001) report. However, the capacity of these programs has been limited by the size and continuity of their external funding. As a result, health care for individuals with developmental disabilities has generally remained outside the nation's general health care systems (i.e., those serving the general population). Rarely, for example, have programs for people with developmental disabilities operated in a competitive health care marketplace alongside other primary care practices. Although important locally, state-supported health care clinics for individuals with developmental disabilities at university hospitals or supported by other specialized funding initiatives, typically have not “generalized” beyond their unique local situation. To be more generally useful, health care models must be both scalable and replicable. A health care practice model can be said to have scalability when it can be readily expanded in terms of capacity and geographical coverage. It is said to be replicable when it does not depend on unique or idiosyncratic conditions (such as specific subsidies, special policies, or other organizational supports) for its maintenance and, therefore, can be easily implanted in a new setting.

The need for scalability and replicability in health care models coupled with the need to work toward the goals in the Surgeon General's report are best addressed through specialized community-based primary care practices that include care management and operate within the general health care system. Such specialized services should appear little different than typical community physicians' offices and should provide a medical home to patients with developmental disabilities (American Academy of Pediatrics, 2002). Unfortunately, unlike the general population, access to health care services for many people with disabilities has not typically been through physicians' offices. For example, health care access for nearly half of Medicaid beneficiaries with disabilities has been through outpatient hospital departments, including emergency rooms (Davidson & Somers, 1998b).

Further, because people with developmental disabilities have often relied upon hospital outpatient programs and emergency rooms as a source of primary care, hospital inpatient spending has also increased. Continuing into the present, approximately 40% of all acute health care expenditures for people with developmental disabilities are for inpatient care. In contrast, spending on primary care services is less than 8%. As a result, there are insufficient resources available to spend on preventive services, primary care, specialty care, and care coordination. As we will show, Medicaid managed care offers an opportunity to reform the Medicaid program by eliminating a bias toward institutionally based health care.

Medicaid Managed Care

Managed care is considered a mechanism for improving resource allocation in health care while improving health care quality (Kongstvedt, 1996). For the general population, more efficient resource allocation has been accomplished primarily through the imposition of utilization controls (e.g., preauthorization requirements, concurrent review). However, these mechanisms, while effective at moderating costs, have proven less effective at improving quality of care (Gold & Mittler, 2000; Walsh & Kastner, 1999). Nonetheless, the past decade has seen significant growth in the utilization of managed care in the Medicaid program. Between 1984 and 2004, the number of Medicaid beneficiaries enrolled in managed care has grown from 250,000 to over 25,000,000. However, most of this growth has occurred in the Temporary Assistance for Needy Families (TANF) program. States have postponed, until recently, the mandatory enrollment of persons with disabilities in Medicaid managed care, that is the inclusion of the so-called “SSI population” of individuals who are elderly, blind and/or have disabilities (Davidson & Somers, 1998b; Draper, Hurley, & Short, 2004; Hurley & Somers, 2003; Kastner & Committee, 2004; Ronder, Kastner, Parker, & Walsh, 1999).

Some critics have cautioned about state policies that include individuals with developmental disabilities in Medicaid managed care, citing potential limits on health care utilization and restricted choice of practitioners (Goel & Keefe, 2003). On the other hand, others have argued that Medicaid managed care provides improved access relative to traditional fee-for-service systems and brings with it the potential for increased health care quality (Ronder et al., 1999; Walsh & Kastner, 1999). Although the research findings are mixed with respect to adults with disabilities, there is evidence of improvement in health care access for children in Medicaid managed care systems; variability in access for adults shows that in some states or contexts access has improved, whereas in other contexts it has remained at fee-for-service levels (Coughlin & Long, 2003; Coughlin, Long, & Kendall, 2002; DeLia, Cantor, & Sandman, 2001; Guendelman & Pearl, 2004). It is likely that access for adults will improve as models of care, such as the one described herein, become more common.

In an effort to improve care quality, commercial and Medicaid managed care organizations have experimented with the use of disease management programs (Fireman, Bartlett, & Selby, 2004; Villagra, 2004). These disease- or condition-specific interventions have been successful for individuals with clearly defined conditions, such as depression, diabetes, asthma, and high-risk pregnancy. However, they have been found to be less useful when applied to heterogeneous groups of patients, such as children with special health care needs and persons with SSI participating in the Aged, Blind and Disabled Program. Nonetheless, conceptualizing adults with developmental disabilities as a homogeneous population for management in primary care settings may be what is required to improve access and quality.

Combining Care Management and Primary Care

Case management has long been recognized as an important part of the service array for persons with chronic illness and disabilities (Kastner et al., 1999). For example, case management is a hallmark of the Home and Community-Based Services (HCBS) Waiver serving persons with developmental disabilities and the Title V Program serving children with special health care needs. Commercial managed care has used case managers to intervene in cases that are cost outliers. With the implementation of Medicaid managed care, health maintenance organizations (HMOs) have expanded the use of health care management to cover more broadly defined groups as seen, for example, in the Oregon Exceptional Needs Care Coordination program (e.g., Rosenbach & Young, 2000).

Recent theory and research suggest that primary care interventions are likely to be the most effective at addressing the two goals of efficiency and quality (Villagra, 2004; Wagner et al., 2001). In the 1990s, the Developmental Disabilities Center at Morristown Memorial Hospital (DDC/MMH) demonstrated that nurse practitioners providing primary care and care management to patients with developmental disabilities reduced inpatient utilization and improved the quality of care (Criscione, Walsh, & Kastner, 1995; Criscione, Walsh, & Nathanson, 1993; Walsh, Kastner, & Criscione, 1997). However, the DDD/MMH program operates outside of the mainstream community health care system, relying heavily on substantial state subsidies. Indeed, within the last year, the program has experienced erosion of its capacity due to the fact that state subsidies have not kept up with inflation. It remains to be seen whether programs such as this can operate in a health care environment that is characterized by rates of reimbursement set by market forces. In another setting, Community Medical Alliance in Boston originally demonstrated an ability to improve care and contain costs in a capitated system. The program served persons with physical disabilities and HIV, using an integrated primary care/case management model. The program generated substantial savings and improved quality by redirecting resources away from hospital utilization and toward primary care and support for durable medical equipment. However, the program operated as a carve-out (i.e., an exception to the typical state plan), with premiums that were quite high (approaching $2,000 per person per month.

When premiums were reduced, the program struggled and was eventually purchased. It now operates as a subsidiary of Neighborhood Health Plan. Both the DDC/MMH and Boston's Community Medical Alliance required substantial capital and maintenance funding, in the form of either state subsidies or high capitation rates, to provide services. Both have had difficulty demonstrating scalability.

A Primary Care and Care Management Model

Alternatively, the Developmental Disabilities Health Alliance (DDHA) has sought to develop a model that pairs primary care with care management in a managed care environment without reliance on state subsidies or extremely high capitation rates. The DDHA has developed as a primary care/care management organization specifically for persons with developmental disabilities; its clinical model is similar to DDC/MMH and Boston's Community Medical Alliance in that nurse practitioners are employed in an expert delivery system in a dual capacity as both care managers and primary care providers. Unlike other specialty practices, however, DDHA operates on a statewide basis serving persons with developmental disabilities in both fee-for-service arrangements (commercial insurance, Medicaid, and Medicare) and managed care, under both capitation and fee-for-service arrangements. In fee-for-service arrangements, DDHA bills a payer organization (e.g., an insurance company) for services, whereas in capitated arrangements with HMOs, DDHA receives a monthly negotiated capitated payment (i.e., per person per month) for each patient enrolled with the HMO. Using these payment structures, DDHA provides care to approximately 2,500 patients through more than 10,000 patient visits per year, including those of more than 800 patients in capitated primary care arrangements. Given the comorbidities associated with the population, primary care capitation includes those services typically offered in primary care settings (e.g., preventive services, health promotion activities, immunizations, acute care) in addition to primary mental health services and seizure management. Additionally, DDHA provides health care management and/or mental health care management services to approximately 3,500 individuals through carve-out arrangements with two large Medicaid HMOs.

The DDHA operates five community-based primary care offices across New Jersey within the main population corridor of this densely populated state (see Figure 1). The strategic placement of DDHA primary care offices provides access to both major metropolitan areas (i.e., New York and Philadelphia) that produce population concentrations in New Jersey as well as the high population areas in the central part of the state (Trenton and New Brunswick). Approximately 80% of the state's population can reach a DDHA community office within 30 minutes. The DDHA model has shown both scalability and replicability in that the five current office settings have been developed in a 6-year span without large subsidies from the state.

Figure 1

New Jersey map showing distribution of DDHA statewide primary care offices in relation to two large metropolitan areas (New York and Philadelphia)

Figure 1

New Jersey map showing distribution of DDHA statewide primary care offices in relation to two large metropolitan areas (New York and Philadelphia)

Each DDHA office is staffed with full-time nurse practitioners and part-time physicians who provide medical and/or mental health services. Associated with each location are on-site care managers who provide care management to DDHA primary care patients enrolled in Medicaid managed care. Additional care managers provide services to patients with developmental disabilities of other primary care providers on a contract basis. The DDHA maintains clinical-referral relationships with hospitals and the practice groups associated with them to provide inpatient management when patients are admitted to hospitals, while retaining care management contact and coordination efforts. Significantly, DDHA maintains a 24-hour, 7-day per week emergency response capability, with a clinical member of the team available at all times to all patients statewide.

It is important to note that DDHA operates as a part of the larger system of care. That is, although DDHA offers specialized care, it does not operate in the same manner as a specialized clinic; rather, it operates as part of the larger system of care because its health care services are funded by the same entities that fund all primary care (e.g., insurance payments, Medicaid, and Medicare). On the other hand, specialized MR/DD clinics have typically relied on targeted state or federal subsidies and do not need to compete for patients in communities; therefore, they often do not offer a comprehensive package of services (e.g., continuity in primary care provider, 24/7 on-call coverage, or intensive care management). However, because DDHA has contracted with HMOs that, in turn, contract with the New Jersey Division of Medical Assistance and Health Services (Medicaid), a comprehensive primary care and care management array of services are offered to members with developmental disabilities. For example, in addition to primary health care and intensive care management, DDHA provides prescription documentation assistance to state-funded providers (e.g., group homes) and linkage to specialists and tertiary care practitioners; and its practitioners often serve as consultants to patients who have established primary care relationships with other community practitioners (e.g., to provide second opinions). Further, DDHA provides primary mental health care and primary neurology care with or without collaboration with established primary mental health or neurology providers. Nonetheless, patients with developmental disabilities can choose between a generic community provider or a specialist primary care provider (DDHA) based upon their own needs and preferences.

The DDHA model has been designed to simplify health care for those with developmental disabilities who may be at a disadvantage in the face of large, complex systems. The model does this by creating a medical home for individuals with developmental disabilities (cf. American Academy of Pediatrics, 2002). The medical home provides answers to questions and alleviates the anxieties of these patients and their caregivers. As a hallmark of this approach, patients and caregivers learn that, when health care problems arise, the best course of action is to call the primary care provider first. For a health care system to adequately address complex issues, including the quality and effectiveness of health care, it is necessary for primary care and the primary care provider to occupy a central place in the model. In fact, one might rightly question what it means to be a primary care provider if that person is not the first point of contact in all health care encounters. The DDHA model holds that the primary care provider should initially address over 90% of the health care needs of the population.

In the DDHA model, the definition of primary care has been expanded to incorporate more than what typically passes for primary care in other systems. One of the reasons for this expansion of content is directly related to the nature of the population. As a group, people with developmental disabilities utilize more health care services because of higher rates of co-morbid conditions related to both physical and mental health. It is well-known that the population of individuals with developmental disabilities has higher rates of physical disabilities (e.g., sensory deficits, speech problems, ambulation and gait disabilities, and metabolic disorders) as well as higher rates of mental health and psychiatric disorders than does the general population. This group also exhibits predictable rates of complex behavioral problems arising separately or in conjunction with mental health problems, cognitive disability, adaptive skill deficits, and environmental factors. The DDHA model encompasses diagnostic and treatment approaches that include all of the complex clinical presentations observed in this group. In short, the model includes in the definition of primary care all of the clinical problems that are typically encountered in people with developmental disabilities.

Health Care Quality in the DDHA Model

Donabedian (1988, 1992) articulated a widely adopted approach to quality health care relying on the ideas of structure, process, and outcomes. This approach to quality has been linked to developmental disabilities (Walsh & Kastner, 1999) as well as, more to the point here, a means to evaluate health care models for individuals with developmental disabilities (Pulcini & Howard, 1997).

Structural elements

The DDHA model has three essential structural elements. First, its five primary health care practices are part of the typical, market-based, HMO network of services with community-based offices that offer ready access to care for patients. Second, care managers are directly linked to the primary care practitioners and, in many cases, the care managers are the nurse practitioners that actually provide a patient's primary care. Third, the model has the active support and involvement of the HMOs and the state Medicaid authority. That is, care management for individuals with developmental disabilities is required and supported by the state as well as by the HMOs. These structural aspects of the model are depicted in Figure 2.

Figure 2

Structural elements of the DDHA community-integrated primary care model for individuals with developmental disabilities

Figure 2

Structural elements of the DDHA community-integrated primary care model for individuals with developmental disabilities

In this model, patients are “care managed” differently, depending on their needs. Individuals with extremely complex health care needs are assigned to care managers who are nurse practitioners or to registered nurse-level care managers. Care managers with social work or similar backgrounds manage patients with less complex clinical presentations, although both groups of care managers carry out the same general case activities. Patients are initially assessed, via telephone or in person, using a complex health care needs assessment instrument from which an individual health care plan is developed. Assessment and plan development are carried out in conjunction with the patient's family and other caregivers, the state developmental disabilities case manager, and other relevant individuals. Health care managers then employ the individual health care plan to manage the care received by patients and provide a link between physicians, nurse practitioners, patients, the patients' HMO, other health care entities (e.g., hospitals, labs, transportation services, and durable medical equipment providers), as well as various developmental disabilities services.

In this way care managers are able to tailor care to individual patients and efficiently arrange resources as well as coordinate care among providers, including preventive services, hospital admissions/ discharges, home care, inpatient and outpatient surgery, medical equipment, and pharmacy services. Through regular telephone contact with patients, care managers are able to identify atypical needs, avoid unnecessary utilization, ensure compliance with medications and other recommendations, encourage improved diet and self-care, and coordinate family and community resources. In short, the positive effects and outcomes of primary care are enhanced because the treatment interventions for the patient are directly structured around the needs of the patient and are directly coordinated with all aspects of the patient's life.

In this model, the preferred payments for primary health care services are capitated payments from HMOs with Medicaid managed care contracts from the state, although there is also fee-for-service billing. Payment for care management services is fully capitated under contracts with HMOs. These capitated arrangements are a key element of the DDHA financing model and result in both its ready scalability and easy replication.

Process elements

The DDHA model is flexible in that it is possible for patients to receive services without requiring that they fit neatly into a specific eligibility category. Individuals may receive different levels of services from DDHA based on their health care needs, their choices with respect to Medicaid managed care, and any other insurance status that may be in force. Although the model is made to accommodate a diverse patient population, in general there are three basic levels of health care services. These are shown in Figure 3. As can be seen, the largest group is patients receiving health care management only from DDHA, a smaller group receives primary care and care management, and a subset of these who also receive specialty care and/or are referred for specialty and other levels of care (e.g., tertiary care in hospitals).

Figure 3

Continuum of services. Patients are served at different intensities in the model as needed

Figure 3

Continuum of services. Patients are served at different intensities in the model as needed

To assure access to specialty care and appropriate tertiary care in hospitals, the developers of DDHA established practice affiliations with specialty practice groups whose practitioners serve as designated attending physicians (i.e., “hospitalists”) and manage DDHA patients in inpatient encounters to assure improved continuity of care. Thus, when a DDHA patient becomes an inpatient, the attending physician has an on-going relationship with DDHA primary care practitioners and care managers. In the same way, DDHA has arrangements with emergency room physicians to admit DDHA patients to the care of these attending physicians. Further, DDHA has embarked on educational and information-dissemination efforts with local hospitals in each of its office regions on the nature of the DDHA practice and the nature and needs of patients with developmental disabilities. The DDHA works continually to assure that its primary care practitioner contact information is available to hospital and specialty providers. Outpatient specialty services are ideally made available through HMO networks and coordinated by DDHA health care managers. For example, when a patient needs a referral to specialty care, the care manager (in many cases the primary care nurse practitioner) coordinates the entire referral process, including providing referral slips, assuring documentation transfer, and assisting the specialist with patient information.

Utilization management and disease management

The process characteristics shown in the lower portion of Figure 3 allow care managers to address both utilization and disease management issues. From the standpoint of providing health care, individuals with developmental disabilities constitute a group that can be variously considered as an intact group for disease management in the classical sense (e.g., Plocher, 1996), or as individuals with chronic care needs in the context of chronic care approaches (e.g., Wagner et al., 2001). As managed care has proliferated in commercial health care markets, traditional utilization management practices took on negative connotations that have continued to be of concern to advocates for individuals with developmental disabilities (e.g., Goel & Keefe, 2003). In essence, changing physician behavior was a goal of early utilization management, but one that was difficult for managed care organizations to achieve.

Disease management has offered managed care organizations an alternative through the opportunity to manage costs by managing groups of similar patients more efficiently. In disease management, efforts are made to help patients with chronic conditions learn about and understand their treatment in relation to their disease. Through such educational efforts, patients are prompted to comply with physician recommendations (e.g., compliance with medication regimes) and to make needed lifestyle changes (Plocher, 1996; Villagra, 2004). In many cases disease management was “outsourced” by HMOs and grew to include complex sets of diseases or multi-disease programs. The practice of outsourcing disease management programs has made them appear, in many cases, as an add-on to health care rather than central to it. Thus, for example, an individual with asthma may periodically receive pamphlets in the mail containing information from the HMO that is completely independent of information delivered by the individual's treatment professional.

However, in the DDHA model, disease management is based on the patient's status as an individual with developmental disabilities and associated health care needs rather than on any specific disease entities. At the same time, DDHA retains the useful elements of disease management and links care management plans to clinical guidelines while having both clinicians and care managers develop specialized skill sets that are useful for this population.

Care management

Another goal of developing this model was to improve continuity between the treatment plan and the provision of care. The most direct way to accomplish this is to integrate the health care manager into the primary care practice. In this way, typical health care management activities (such as identifying patients with complex clinical presentations or atypical needs, actively coordinating the various health care services needed, benefits management, health care assessment, treatment planning, appointment planning, and assistance with durable medical equipment) can be accomplished (e.g., Kastner et al., 1999; Rosenbach & Young, 2000). In this way, the concepts of disease management and care coordination are integrated into a comprehensive model of primary health care services.

Taken together, primary care, care management, and disease management find common ground in the DDHA model and constitute the foundation of the medical home. inclusion of these three vital components in a single, primary care practice model, results in more efficient and efficacious care, and higher quality care, all achieved while producing cost savings. In addition, the expansion of what is included in primary care to cover primary mental health and primary neurology interventions allows the model to be used to effectively address a wider range of health care concerns affecting those with developmental disabilities. It is precisely these facets of the model that garnered recognition for DDHA in the Surgeon General's report on this population (U.S. Public Health Services, 2001) as well as recognition by researchers of the University of Massachusetts Medical School, who have included the DDHA model as a “promising practice” in their study of Medicaid managed care for the SSI population (Beaman, Stewart-Pagan, & O'Connor, 2004).

Outcomes

As we have highlighted elsewhere (Walsh & Kastner, 1999), health care outcomes are complex and diverse. However, even during the early stages of the functioning of this model, it became apparent that positive outcomes at all levels—system, process, and patient—are possible.

Scalable and replicable

We have already shown how the scalability of the model has been achieved through contractual agreements with HMOs for primary care and care management. The scalability of the model is reinforced by the ease with which it can be replicated and implanted into new geographical market areas. For example, in the system DDHA built in New Jersey, the first office was opened in October 1999, with an additional office opened each year since that time, with the exception of one year. The capitated arrangement with HMOs provides the resources necessary to easily scale-up the model and to replicate it rapidly.

A major hurdle in the growth of the model has been the need to gain access to financial capital. This was a particularly difficult challenge at the time DDHA was initially incorporated. As a result, DDHA obtained a modest state-subsidy in order to assist in the establishment of its first office. Since that time, however, all of the growth (the additional four office locations) has been financed internally through surplus revenues. At this time, DDHA operates without any debt and can internally finance the establishment of a new office each year.

Person-centered

An emerging idea in health care quality is the inclusion of patients in health care decision-making (e.g., Sepucha, Fowler, & Mulley, 2004). Because the care managers work with individual consumers to tailor their personal health care plan and are directly integrated into primary care office locations, care management is person-centered. Health care decision processes are closely linked to the patient's perspective (including the perspective of the caregiver). Each person eligible for care management receives a care manager who conducts an initial assessment and develops an individualized health care plan in conjunction with the primary care provider, the individual's family members, and the individual's state developmental disability case manager. Emphasis is placed on maintaining stability in care management caseloads so that individuals become familiar with their care manager through monthly telephone calls. Individuals who have complex health care needs are provided with either a nurse practitioner or a registered nurse to serve as their care manager. New Jersey includes many Spanish-speaking communities, and DDHA provides care managers who speak Spanish to accommodate individuals from these communities. When required, care managers and nurses make home visits to assess clinical and environmental conditions necessary to accomplish effective health care.

Management information system

Because DDHA is a statewide entity, the efficiency of the care management and coordination efforts of care managers are enhanced by the availability of a single, centralized, statewide Internet-based information management system that operates in real-time during telephone care management contacts. Care management notes, data, and provider status can be accessed for both routine care management functions as well as system management and monitoring. Because the system is Internet-based, on-call individuals can have access to patient care management information when offices are closed.

Patient satisfaction

A key outcome for all health care settings is patient satisfaction. Satisfaction surveys of DDHA patients are conducted to determine patient satisfaction with this model. The most recent survey for which data are available (Developmental Disabilities Health Alliance, 2004) included 116 patients, ranging in age from 5 to 80 years. Among the health care access measures, results indicated that: (a) 98% of patients were able to schedule an initial appointment within 2 weeks, (b) the average time spent in the waiting room was only 6.4 minutes, (c) 98% of respondents agreed or strongly agreed that prescription refills were handled efficiently, (d) 93% noted the same about emergencies, and (e) 80% noted the ease of getting help on evenings and weekends. Over 95% of the time, respondents agreed or agreed strongly with statements that (a) a high quality of care was received on the day of the survey, (b) that they were highly satisfied with the consistency and continuity in the individual who provided their care, and (c) that they were satisfied with the ability to have their questions answered fully. Overall, 98% of respondents were satisfied with their care; 95% agreed or strongly agreed that visits were long enough and that the staff members were respectful. In addition, with respect to actual health care outcomes, nearly 80% of respondents agreed that the health of the individual with disabilities had improved during the preceding year.

Reduced practice variation

A long-known problem in health care quality and cost efficiencies is that of variation in treatment patterns across practices, service settings, and geographic regions (Wennberg, 1984). By linking five individual practices located up to 175 miles apart under one administrative structure and coordinating the care of all patients through centrally managed care managers, unwanted practice variation is reduced. In addition to typical administrative structures, variation is further reduced by the presence of clinicians in more than one clinical site. For example, internal medicine physicians work in more than one office; the physician providing mental health services covers all of the sites, and nurse practitioners are included in coverage systems across regional office locations. Finally, internal clinician education practices and other standardization methods operate across the organization, such as the use of standard clinical practice guidelines and the dissemination of a single primary care manual. These efforts result in similar clinical practice patterns in each office and reduce unwanted practice variation.

Evaluation of the Model

As noted earlier, Reichard and Turnbull (2004) presented four criteria for the evaluation of health care for people with developmental disabilities. In their formulation, they ask about:

a) its availability: Does it exist? (b) its accessibility: Is it accessible? (c) its appropriateness, from the perspective of the persons and their families of other direct caregivers: Do they believe that it satisfies their needs? and (d) its affordability: Is it within the financial reach of the patients?” (p. 181)

The DDHA practice model described here demonstrably meets all of these criteria. In relation to availability, five settings in a populous mid-Atlantic state now provide comprehensive health care services solely to individuals with developmental disabilities where, as recently as 6 years ago, none of the sites existed. Furthermore, additional community offices are currently being planned.

These settings are all accessible in both the larger health care meaning of the term, that is, in providing expanded health care access to the population as well as in the more narrow use of the term to denote physical accessibility to health care offices. Settings are wheelchair accessible with ramps or elevators. Examination rooms are equipped with motorized exam tables that facilitate transition and positioning; they are also equipped with chair scales (for weighing patients with gait or ambulation problems). Although DDHA practitioners routinely work to de-sensitize anxious patients to the medical office environment, they also are willing to make home visits for patients who are unable to receive services in the office setting.

It is also clear that the recommendations of the Surgeon General's Conference (2001) are addressed though this model by the direct inclusion of health care settings in community environments (Recommendation 1), engendering a broader understanding of the population in the health care field (Recommendation 2), improving health care quality (Recommendation 3), providing integrated sites for the training of professionals (Recommendation 4), creating an effective health care financing model (Recommendation 5), and increasing the numbers of providers and access for patients (Recommendation 6).

Perhaps most important, however, are the voices of individuals who receive care through this model. The appropriateness of care is amply documented in the health care satisfaction statistics cited earlier. Nonetheless, it is noteworthy that in a recent survey (Developmental Disabilities Health Alliance, 2004) of 116 patients surveyed across the state, 56 respondents (43%) returned forms with written comments, virtually all of which praised the accessibility and quality of care available through DDHA. Below are three examples of the types of comments made:

(I am) very pleased with the care that my children receive. It is wonderful to take them to medical professionals who really care about them. (mother of two DDHA patients)

The staff who work there are wonderful people; they always answer questions you have … all my clients love going there. (group home manager)

We think you do a great job! Staff are friendly and concerned about the clients' well-being … and the office is clean. (foster home sponsor)

Finally, with respect to affordability, the DDHA model was developed to operate successfully in a Medicaid managed care marketplace. Third party payers are billed—private insurance, Medicare, or Medicaid fee-for-service—for those who are not enrolled in Medicaid managed care. There is no reliance on state or federal subsidies as is the case for most “specialized DD clinics.” In fact, we argue that such reliance leads, over time, to constriction in services as growth in subsidies falls behind actual cost increases. Instead, administrators of DDHA have actually been able to expand its services to cover an entire state in slightly over 6 years by relying on available health care funding, most notably Medicaid managed care contracts.

Conclusion

The lack of community-based health care for individuals with developmental disabilities has been a constant concern during the past several decades. This problem will continue to exist if health care for individuals with developmental disabilities is provided outside of the market-based, mainstream American health care system, that is, in specially subsidized systems or programs. Although such settings may play a role as secondary or tertiary providers, it may not be possible for these programs to continue to be a viable primary care option for this population. Subsidies from state- or grant-based funding mechanisms have the effect of limiting efficient responses to market changes. Thus, there is a built-in lack of scalability that is exacerbated by constrictions in state budgets. Therefore, the funding of such settings is often unable to keep up with rising health care costs, let alone expand capacity to new geographical areas, patient groups, or additional services. In contrast, health care delivered within normative health care markets, in this case Medicaid managed care, is more likely to be associated with improved access, better quality, improved outcomes, and increased patient satisfaction when compared to the former fee-for-service or subsidized/safety-net systems.

Medicaid managed care also represents an opportunity to end the institutional bias that exists in the community health care delivery system for people with developmental disabilities. Reallocation of funds from hospital and nursing home care can be used to support more cost-effective programs in preventive health care and health promotion, primary care, and care management. New models of care that are disease-focused and include important health care services for this population, such as health care management, can then be supported through Medicaid managed care on a maintenance basis through fee-for-service, capitation, and other mainstream financing arrangements. In short, models such as the one described here will be able to provide a medical home to individuals with developmental disabilities in typical community health care settings.

The major barrier to this approach is a lack of start-up capital. Current safety net providers do not have the resources to make this transformation. States and foundations should use their resources strategically, underwriting the establishment of innovative programs that can take advantage of flexibility in funding offered by Medicaid HMOs. In the future, the success of health care delivery for persons with developmental disabilities will depend on programs that can simultaneously emphasize primary care, care coordination, and disease management while redirecting health care utilization away from emergency room, hospital, nursing home, and similar settings.

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Author notes

Authors: Theodore A. Kastner, MD, President, Developmental Disabilities Health Alliance, Inc., 1285 Broad St., Bloomfield, NJ 07003-3045. Kevin K. Walsh, PhD (kwalsh@ddha.com), Director of Quality Management and Research Developmental Disabilities Health Alliance, Inc., 527 Forest Grove Rd., Vineland, NJ 08360-1865