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COPYRIGHT 2005 Pro-Ed
This article reports research that connects the core concepts of health care policy and the four related health care principles (benevolence, nonmaleficence, autonomy, and justice) to prior research on the core concepts of disability policy and a framework that reflects constitutional, ethical, and administrative principles.
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The Beach Center on Disability (the Center) is a rehabilitation research and training center on public policy affecting families who have children with disabilities. In 1998, the Center began research pursuant to a grant, funded by the National Institute of Disability and Rehabilitation Research, on the quality of life of families with children who have disabilities. The Center's researchers hypothesized that there are certain core concepts that fundamentally affect federal disability policy in three service-provider sectors (health, education, and human and social services). These federal policies in turn affect state and local policy and service delivery practices, including the partnerships between families and professionals and among service provider systems. The accumulated results of these core concepts, policies, and practices affect the quality of life of individuals with disabilities and their families.
The Center's research was thus composed of three interrelated strands: the core concepts of disability policy (including health-care policy), effective partnerships among providers and families, and the outcome of family quality of life. The Center's researchers set out the conceptual relationships between these research strands in an overarching "analytical framework." The results of the research on the core concepts of disability policy were reported in Journal of Disability Policy Studies, Vol. 12, No. 3, Winter 2001.
A complementary study was also conducted to specifically identify the core concepts of health-care policy and relate them to principles of health care that have guided professionals. The results of the research on the core concepts of health-care policy were also reported in Journal of Disability Policy Studies, Vol. 12, No. 3. The present article discusses whether it is possible to (a) connect the core concepts of health policy to the core concepts of disability policy and (b) connect the principles of health care to the principles that subsume the core concepts of disability policy.
The Relationship of the Health-Care Policy Framework to the Disability Policy Framework
There are three ways to accomplish a comparison of the health-care policy framework and the disability policy framework: (1) to compare the core concepts of health policy with the core concepts of disability policy, (2) to compare the four historic principles of health-care delivery with the nine principles that encompass the disability core concepts, and (3) to compare the core concepts of disability policy to the four historic principles or compare the health-care core concepts to the nine principles that encompass the disability core concepts. We employ all three of these methods simultaneously to establish the connections among both sets of core concepts and both frameworks. Before we can begin the comparison, however, we need to introduce the health-care and disability policy frameworks. Because of the complexity of the disability policy framework, we provide significant detail on its components and the relationships between those components.
The Health-Care Framework: Core Concepts and Principles
In prior research, we identified 17 core concepts of healthcare policy that affect families who have children with disabilities: equity, access, accountability, appropriate services, family-centered services, integration, effective treatment, self-determination, family integrity, privacy and confidentiality, prevention and amelioration, dignity, cultural competence, quality of life, empowerment, paternalism, and nonbeneficial services.
We also carried out research to determine how these 17 health-care core concepts relate to the four historic principles that guide the delivery of health care: Autonomy, Beneficence, Nonmaleficence, and Justice. We found that three core concepts of health policy relate specifically and distinctly to the principle of Autonomy. These are empowerment, self-determination/substitute decision-making, and privacy, and confidentiality. Likewise, five other core concepts most closely relate to the principle of Beneficence. These five are effective treatment, appropriate services, paternalism, prevention and amelioration, and quality of life. Four more core concepts directly relate to the principle of Justice. These four are access, accountability, equity, and cultural competence. Only one core concept, nonbeneficial services, relates to the principle of Nonmaleficence. Finally, we found that four core concepts related strongly not to any one of the four principles specifically but, rather, to all of the principles. These four are dignity, family integrity, family centeredness, and integration. The result of these connections was a framework of health-care policy as shown in Table 1.
The Core Concepts of Disability Policy
In our previous research to identify the core concepts, we used three research methods simultaneously: a literature review that included an analysis of relevant law (statutes and cases) and legal commentary, a participatory action research (PAR) process, and data analysis of interviews and focus groups (Turnbull, Beegle, & Stowe, 2001). This process allowed us to conclude that there are 18 core concepts of disability policy. They are as follows:
1. antidiscrimination,
2. individualized and appropriate services,
3. classification,
4. capacity-based services,
5. empowerment/participatory decision making,
6. coordination and collaboration,
7. protection from harm,
8. liberty,
9. autonomy,
10. privacy & confidentiality,
11. integration,
12. productivity and contribution,
13. family integrity and unity,
14. family centeredness,
15. cultural responsiveness,
16. accountability,
17. professional capacity, and
18. prevention.
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