1. Title:Emerging Disability Policy Framework: A Guidepost for Analyzing Public Policy
2. Author: Robert Silverstein (KACW-2/7/03)
3. Purpose of the Article:A "new paradigm" of disability has emerged that considers disability a natural and normal part of the human experience. Rather than focusing on "fixing" the individual, the "new paradigm" focuses on taking effective and meaningful actions to "fix" or modify the natural, constructed, cultural, and social environment. The focus of the "new paradigm" is on eliminating the attitudinal and institutional barriers that preclude persons with disabilities from participating fully in society's mainstream. The Emerging Disability Policy Framework consistent with the "new paradigm" can be used a guidepost to design, implement, and evaluate generic and disability-specific, public policies and programs to ensure meaningful inclusion of people with disabilities in mainstream society.
4. Types of Laws Affecting People With Disabilities:The five general categories of laws that affect people with disabilities includes Civil Rights statutes, entitlement programs, discretionary grant-in-aid programs, regulatory statutes and miscellaneous provisions.

Civil Rights statutes are permanent and prohibit covered entities, state or local governments, and businesses from discriminating against individuals on the basis of or by reason of disability. Federal agencies develop policy, complaint resolution, monitoring, and enforcement of these statutes but they do not preclude a state or local community from adopting additional protections. Examples of Civil Right statutes are the ADA and IDEA.

Entitlement programs affecting people with disabilities are either open or close ended. Open-ended entitlement programs guarantee eligible individuals a specified level of benefits. These programs are often referred to as "mandatory spending" programs because Congress must appropriate sufficient funds to pay for them. Examples of "open-ended" entitlement programs include the Social Security Disability Insurance (SSDI) program and the Medicare program. A "close-ended" entitlement program provides a state or other entity with a fixed allotment of funds over a specified period of time and individuals receive benefits only to the extent that funds are available. Examples include: the Vocational Rehabilitation program and the Children’s Health Insurance program.

Discretionary grant-in-aid programs provide supplementary federal financial assistance to support specified activities carried out by other entities, such as state and local public agencies and private agencies. Some discretionary grant programs are specifically targeted at the needs of persons with disabilities; others are generic and are targeted at specified populations or purposes. There are two types of discretionary grant-in-aid programs: formula programs and competitive grant programs. Both types are subject to annual funding by Congress. These programs are discretionary because Congress may appropriate whatever amount of funds it deems necessary or adequate. Formula grant programs support ongoing activities of state or local government agencies or nonprofit organizations and foster systemic change by them. A "formula" is in legislation specifying the exact amount of funds each entity will receive. An Example is State DD Councils.

Regulatory legislation provides minimum protections for a class of persons, including, but not limited to, persons with disabilities. Examples include: the National Voter Registration Act of 1993 and the Family and Medical Leave Act.

The fifth category of laws affecting people with disabilities includes appropriations bills providing the funding for various programs. These bills and the accompanying reports often direct various departments and agencies to spend discretionary funds in a specified way, including addressing the needs of persons with disabilities. Examples include: the Disabled Access Tax Credit and the Targeted Jobs Credit.

5. Statement of Rationale and Findings: A statement of findings for the proposed legislation must be prepared after the most appropriate category of legislation is determined. A well-constructed statement of findings includes: a description of the historical treatment of persons with disabilities, a summary of the nature of the problem addressed by the proposed legislation, reasons why the issue is important and why change is needed, and an explanation of the role of various entities in designing, implementing, and evaluating the legislation. The statement of findings should convince policymakers of the legislation merits and when the bill is enacted, the rationale provides a clear statement to guide the law’s implementation. Examples of statements of findings from the ADA are: some forty-three million Americans have one or more physical or mental disabilities, and this number is increasing as the population as a whole is growing older; historically, society has tended to isolate and segregate individuals with disabilities, and, despite some improvements, and unlike individuals who have experienced discrimination on the basis of race, color, sex, national origin, religion, or age, individuals who have experienced discrimination on the basis of disability have often had no legal recourse to redress such discrimination; individuals with disabilities continually encounter various forms of discrimination, including outright intentional exclusion, the discriminatory effects of architectural, transportation, and communication barriers, overprotective rules and policies, failure to make modifications to existing facilities and practices, exclusionary qualification standards and criteria, segregation, and relegation to lesser services, programs, activities, benefits, jobs, or other opportunities; and the Nation’s proper goals regarding individuals with disabilities are to assure equality of opportunity, full participation, independent living, and economic self-sufficiency for such individuals.
6. Statement of Precept and Overarching Goals: After the statement of findings section, most major disability-specific legislation includes a statement of precept and goals. A well-constructed precept and statement of goals further facilitates the legislation’s enactment by convincing policymakers of its merits and when enacted, the precept and goals provide clear statements to guide its implementation. The ADA includes the following statement of policy articulating our Nation’s goals regarding people with Disabilities: "The Nation’s proper goals regarding individuals with disabilities are to assure equality of opportunity, full participation, independent living, and economic self-sufficiency for such individuals."
7. Definitions of Disability: The definition of disability is drafted to accomplish the purposes of the legislation. For this reason, the term "disability" may be defined differently in every piece of legislation. Civil rights statutes require a definition of disability to determine which individuals will be protected by the legislation. The definition of who is a person with a disability is also included in a formula grant and an entitlement program to determine who are eligible for benefits or services. The definition of disability included in the ADA and section 504 of the Rehabilitation Act of 1973 is sufficiently broad to reflect the three types of discrimination that people with disabilities face - discrimination based on one’s impairment, discrimination based on a history of having an impairment (even though the individual no longer has the impairment), and discrimination based on being regarded as having an impairment (even though the individual does not actually have that impairment). Therefore, the definition of "disability" in the ADA includes three prongs to reflect these three types of discrimination. The ADA specifies that "disability" means, with respect to an individual, "a physical or mental impairment that substantially limits one or more of the major life activities of such individual; a record of such an impairment; or being regarded as having such an impairment." The ADA also includes definitions of the term "qualified individual with a disability." For the purpose of Title I of the ADA (relating to employment), the term means "an individual with a disability who, with or without reasonable accommodation, can perform the essential functions of the employment position that such individual holds or desires."
8. Core Policies: Core policies need to be specified because they describe the scope and limitations of the protections; and they describe the nature and type of benefits and the circumstances under which benefits and services will be provided. With the ADA, the core policies are: equality of opportunity, full participation (empowerment), independent living, and economic self-sufficiency.
9. Methods of Administration: Methods of administration are administrative or accountability provisions included in most legislation ensuring that individuals are afforded due process of law, outcome measures to determine the impact of the legislation, and methods for financing programs. The criteria and methods used for administering a program, service, or activity, such as written policy, must be consistent with the rights and needs of individuals with disabilities and their families. The ADA regulation specifies that: a public entity may not, directly or through contractual or other arrangements, utilize criteria and or methods of administration; have the effect of subjecting qualified individuals with disabilities to discrimination on the basis of disability; have the purpose of defeating or substantially impairing the accomplishment of the objectives of the public entity’s program with respect to individuals with disabilities; or perpetuate the discrimination of another public entity. The Methods of Administration must describe how the state and recipients will: appoint equal opportunity officers; provide notice and communications; provide data information collection, maintenance and quantifiable analysis of records and data kept; review policies, practices, procedures, and implementation; conduct and carry out investigations, oversight, monitoring, and enforcement; carry out complaint processing; and conduct equal opportunity training.

State entitlement programs and many grant-in-aid programs, particularly formula grant programs, require the submission of state and local plans or applications, describing how the public agency plans to satisfy the program’s applicable requirements in the form of grant terms and conditions. Waivers provide exemptions or alternative methods of implementation. Congressional concern over past or potential noncompliance by state and local grantees has prompted the inclusion of special monitoring and enforcement directives and procedures within the statute. Many laws covering individuals with disabilities, particularly the ADA and the IDEA include procedural safeguards to ensure remedies of violations of an individual’s guaranteed rights including: the right to receive a notice of rights; the right to examine records; and the right to file a complaint.

To ensure accountability many programs require that grantees report program performance as part of an annual evaluation. In the education context, the 1997 amendments to the IDEA go a step further by requiring the establishment of specific performance goals and objectives. Such goals and objectives must promote the purposes of the Act and be consistent with other goals and standards for non-disabled children in the state.

Congress has established and supported entities whose responsibilities include advocating for and representing persons with disabilities. Every state has a protection and advocacy system for persons with developmental disabilities authorized under the Developmental Disabilities Assistance and Bill of Rights Act. Many programs place accountability for their administration on a single agency to avoid "buck passing." For example, the Medicaid program required every state to designate a single agency responsible for implementing the program and the state educational agency must administer the IDEA program. Many programs provide tools to ensure interagency linkages and coordination. Linkages are critical between programs targeted at persons with disabilities and generic systems that include persons with disabilities as program beneficiaries preventing anyone from "falling between the cracks." Legislation also requires all agencies pay their fair share for services, when an individual may be entitled to under multiple funding authorities. Service coordination provides case management to assist and enable individuals with disabilities and their families to receive the rights, procedural safeguards, and authorized services under the various programs. The comprehensive array of services and supports that may be required by people with disabilities and their families may be authorized under separate federal or state programs, which have distinct eligibility rules. Part C of the IDEA provides for the identification of the service coordinator in the Individualized Family Service Plan for infants and toddlers with disabilities and their families. The coordinator is chosen from the profession that is most immediately relevant to the child’s or family’s needs and should be qualified to carry out all applicable responsibilities under Part C. The regulations define "service coordination" to mean: the activities carried out by a service coordinator to assist and enable a child eligible under this part and the child’s family to receive the rights, procedural safeguards, and services that are authorized to be provided under the State’s early intervention program.

To ensure agencies do not adopt schemes for financing service delivery that have the effect of denying equal opportunity or the accomplishment of other goals of disability policy, legislation includes specific rules prescribing and proscribing agency conduct. In the education context, the IDEA includes several provisions ensuring educational agencies adopt criteria and methods of administration to achieve policy objectives expressed in the legislation along with other laws.

Legislation typically contains provisions protecting confidentiality of records and requiring informed consent before entities take certain actions affecting persons with disabilities. In protection and advocacy systems, the efforts to determine if allegations of abuse and neglect of residents residing in residential facilities are real can be disrupted if they are not provided reasonable access the person and their records giving them access to any resident of any facility that is providing services, supports, and other assistance.

10. Program Supports: Finally stakeholders must ensure that initiatives conform to best practices and are state-of-the-art by adopting program supports, such as grants, to support systemic change, research, training, and technical assistance. Examples of program supports include: Systemic Change-grants designed to support systemic change; Training of Persons with Disabilities and Their Families- Developmental Disabilities Councils and Personnel Preparation and Training Grant programs also support personnel preparation and training, such as Part D of the Developmental Disabilities Assistance and Bill of Rights Act which supports interdisciplinary programs operated by universities or by public or nonprofit entities associated with them.

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