Ethics, Values, and Policy Decisions for Children with Disabilities: What Are the Costs of Political Correctness?

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To analyze public policy and social service delivery for children with disabilities and other special populations of young people, we constructed a historical three-tier framework of values that is integral to the delivery of health and social services. Figure 1 shows the seven values in the framework an their opposing polarities of egalitarian idealism and fiscal/political constraint. Philosophical ideals and fiscal/political realities must be properl balanced in public policy and subsequent legislation if implementation is to be adequate for the population it is meant to serve.

The framework is derived from the analysis of legislation from the Sheppard-Towner Act of 1921 to the present.[1] Its interrelated values are stratified into three interdependent tiers: access, quality, and equity. They conceptualize the sequential stages of the equitable delivery of services to underserved persons.

American public policy embodies a number of values, including efficiency, federalism, and provider autonomy, that reflect the interests of providers, policymakers, administrators, and other powerful participants. The seven values focus on the relationship between persons with special needs and the government they are essential to the equitable delivery of services. Given the present-day economic pressures that create disincentives for providing services, a values framework directed to recipients is more important now than ever before. The policy values of efficiency, federalism, and physician autonomy are addressed tangentially in our framework because each plays an integral role in shaping th framework's two polarities: egalitarian idealism and fiscal/political constraint.

The hierarchical overview of values provides our perspective for analyzing health care and special education legislation for children with disabilities. W start with the idealism surrounding the legislation and then focus on the non-ideal cost-driven dimensions. We follow with comments on the rehabilitative and vocational legislation and conclude with comments on how the adequate implementation of all seven values in the framework provides opportunities for children with disabilities to exercise their fundamental right to autonomy.

THE HISTORICAL VALUES FRAMEWORK: A HIERARCHIC OVERVIEW

Access Tier. The first tier values -- equitable eligibility and access -- are a potential recipient's entry to the health and education systems. Eligibility -- financial and/or categorical -- is the "gatekeeper" to publicly financed services.

As a value, access has two distinct dimensions: recipient assistance and geographic accessibility. The first opens the door to appropriate assistance an to attentiveness and the second eliminates or reduces barriers. Common barriers to access include the stigma associated with welfare programs, complicated eligibility forms, lack of awareness or understanding of program benefits, language difficulties, and enrollment procedures.

Quality Tier. The enriching values of confidentiality, recipient choice, equitable scope of care, and quality constitute this tier. It differs from the access tier by enabling the recipient actually to receive needed services.

Confidentiality, an essential facet of the delivery of high-quality services, bridges the access and quality tiers given its role in both the access to and the provision of services. It entails the right of an individual to protect and control personal information, and it imposes on government personnel and servic professionals the duty to respect and protect an individual's personal history.[2]

Recipient choice and scope of care are synergistic. The value of recipient choice is predicated on respect for a recipient's autonomy, and pertains to the freedom to choose one's provider and alternative plans of care. The value scope of care covers comprehensive preventive and social services. Inordinate restrictions on either value inevitably diminish the quality of care.

The values confidentiality, recipient choice, and scope of care interact and contribute to the value quality. In addition, quality encompasses the appropriate service structures and processes that are delivered by accredited personnel and organizations to achieve optimal outcomes. Quality of care is necessary for services to be equitable.

Equity Tier. This tier encompasses the value equality of care. The principle of equity, when applied to social services, requires them to be distributed in a fair and just manner according to individual need, not in equal shares.[3] Equity is attained when everyone is impartially allocated a "basic decent minimum."[3]

Given that the health care, educational, and social service needs of …