Recently, a great deal of attention has been paid to the health needs of individuals with developmental disabilities and the significant difficulties they face in accessing appropriate health care services (Nehring, 2005; Parish, Moss, & Richman, in press). Significantly less attention has been paid to interventions intended to help adults with developmental disabilities obtain needed health care (Kastner & Walsh, 2006; Lennox et al., 2004).
We reviewed the research literature and used our review to develop a model to help adults with developmental disabilities access primary health care in their communities. The model was designed for adults with developmental disabilities who have severe communication difficulties, who are unable to advocate for their own health care needs, and whose health care is paid for by Medicaid. Unfortunately, we were unable to fully implement and evaluate the model because of a large reorganization of human services in North Carolina. Nevertheless, most of the public and private stakeholders with whom we partnered to develop this model were impressed by it and excited about its potential. Thus, our goal here is to describe the rationale for the model, its four components, and lessons we learned from initial efforts to implement it.
Premises on Which the Model Is Based
Our model, which we call the North Carolina Primary Healthcare for Adults with Developmental Disabilities (NC PHAADD) model, is in large part, based on four premises drawn from literature and practice. First, treating individuals with developmental disabilities is often difficult for physicians, most of whom have little training and experience in treating members of this population (Rubin & Crocker, 2006). Second, many services and activities related to health care, such as helping persons with communication difficulties and their physicians understand one another during medical appointments and monitoring individuals' health conditions at home, can be provided by nonphysician professionals, family members, residential staff, and other individuals who support adults with developmental disabilities (Lennox et al., 2004). Third, written guidelines and checklists can help support individuals know when medical attention is needed (Massachusetts Department of Mental Retardation, n.d.). Fourth, a well-organized medical record brought to all office visits can help keep physicians abreast of current health issues and assist them in providing the best possible care (Lennox et al., 2004).
Promising Interventions on Which the Model Is Based
Several interventions have been tried previously to help adults with developmental disabilities obtain appropriate health care; these interventions also helped guide the development of our model. A 5-year medical diary that contained medical records and other personal information, brought by adults with intellectual disabilities to medical appointments, was found promising in improving communication with physicians and increasing patients' involvement in their health care (Lennox et al., 2004). An educational tool intended to accompany the medical diary also appeared promising in teaching health advocates how to prepare individuals with developmental disabilities for medical visits (Lennox et al., 2004). A primary care service model that included a strong care-management component and took advantage of Medicaid managed-care funding appeared effective in providing adults with developmental disabilities with a primary care “medical home” and specialized managed care–case management (Kastner & Walsh, 2006).
Goal of the Model
We designed our model to improve access to appropriate medical services for adults with developmental disabilities. This goal is accomplished through four types of activities: (a) helping family members, residential staff, or other support individuals recognize when medical care is needed; (b) facilitating communication between these individuals and health care providers during and between medical visits; (c) providing care management for adults with developmental disabilities who are Medicaid recipients and have high-risk medical conditions; and (d) coordinating services and supports provided by the pertinent health care and developmental disabilities public agencies.
The NC PHAADD Model
Our model consists of four components, which are adaptations of the promising interventions identified in the literature (Kastner & Walsh, 2006; Lennox et al., 2004). The components consist of a health care tool kit, the use of health advocates, medical care management, and coordinating health care and developmental disabilities services.
Health Care Tool Kits
We developed a Healthcare Tool Kit by adapting materials from the Massachusetts Department of Mental Retardation (n.d.). Our Tool Kit (available on request) contains information about common health risks and conditions and a health-record form on which to record an individual's medical and social history. It provides forms and checklists to help family members, direct support staff, developmental disabilities case managers, and medical providers identify and communicate health care needs and appropriate treatments. Tool Kit forms and checklists are to be regularly updated and brought to all medical encounters.
The small amount of literature published on health advocacy suggests that, for people with disabilities who are unable to speak, unable to understand others, or unable to be understood by others, a “health advocate” appears promising (Lennox, 2004). The health advocate can be a family member, residential staff person, or other trusted individual who spends enough time with the adult to recognize changes in his or her health status. Health advocates are trained to make timely medical appointments, to assist during clinical encounters, to help with activities such as monitoring health status changes outside the health care setting, and to communicate care recommendations to other caregivers.
Medical Care Management
To remain healthy and avoid unnecessary hospitalizations, many adults with developmental disabilities need help managing their chronic illnesses. Our model provides this help by access to medical care managers working within the Medicaid managed-care program. Medicaid managed-care programs typically use care managers for patient groups who are deemed at risk for high rates of service use and high costs, such as those with diabetes and heart conditions. Care managers typically coordinate the interactions between the patient and physicians and other health services, provide education and training to patients and families, help schedule appointments, arrange for special equipment, facilitate transportation, and, in some cases, provide actual care (Kastner & Walsh, 2006).
Coordinating the Health Care and Developmental Disabilities Systems
In our model, we sought to coordinate the services of developmental disabilities case managers and Medicaid care managers. The model requires both case and care managers to share information about clients' health and service needs, to consult and coordinate with one another, and, together, to recognize and fill gaps in care. We also hope that getting Medicaid care managers to focus on people with developmental disabilities will, in turn, help educate and build interest among their physician colleagues in treating members of this population.
Lessons Learned and Recommendations
Although we have not yet been able to fully test our model, we have learned enough through our 2-year trial to recommend changes for state policymakers interested in improving health care access of adults with developmental disabilities. Developmental disabilities case managers play the central role in coordinating most nonmedical services received by people with developmental disabilities, and they should be required to incorporate health care needs within person-centered and other individualized service plans. These case managers should be fully and effectively trained to use tools like those in our health care Tool Kit to help them recognize heath care needs and know how to interface with Medicaid care managers.
Interventions need to be developed and rigorously tested to help Medicaid care managers recognize and work with adults with developmental disabilities who have common health conditions like hypertension, diabetes, and obesity. After effective protocols are developed, Medicaid care managers should be trained in their use.
Formal mechanisms should be instituted to require information sharing and service coordination between developmental disabilities case managers and Medicaid care managers. Case–care managers who share responsibility for serving the same individual must be brought together in joint orientation and training sessions. Furthermore, formal mechanisms should be established for referring individuals with developmental disabilities who need medical care management.
The ongoing deinstitutionalization movement means that adults with developmental disabilities principally rely on community-based services and care. States should proactively adopt policies, fund programs, and support research that facilitates individualized, coordinated health care for community-dwelling adults with developmental disabilities. The elements and approaches of our model are a promising start.
We gratefully acknowledge Nandini Sen for her assistance with the project on which this article is based. We thank Susan Parish for her helpful comments on an earlier draft of the manuscript. Preparation of the manuscript was funded, in part, by a grant from the North Carolina Council on Developmental Disabilities.
Kathryn Moss, PhD (E-mail: email@example.com), Research Professor, School of Social Work, and Head, Disability Research Section, Program on Aging, Disability, and Long Term Care; Mary Fraser, DSW, Research Consultant; and Donald Pathman, MD, MPH, Professor and Research Director, Department of Family Medicine, and Director, Program on Health Professions and Primary Care, Cecil G. Sheps Center for Health Services Research, University of North Carolina at Chapel Hill, Chapel Hill, NC