AHEAD Best Practices for Test Takers
Disability Documentation in Higher Education
In recognition of the importance of disability documentation to the AHEAD membership and other interested constituencies, AHEAD presents the following principles and documentation dimensions as best practice for disability service providers in higher education to use in developing and refining a comprehensive, consistent and responsive approach to disability documentation. The framework presented here is responsive to both the spirit and letter of legal mandates and is broadly designed so that it can be adapted to fit the individual contexts of a variety of institutions.
Nothing presented as "Best Practices" should be considered a legal treatise or legal advice.Institutions are encouraged to consult with their legal counsel before implementing policies on documentation and should include institutional stakeholders in policy review and development. Additionally, AHEAD recommends a review of documentation practices every 3-7 years in order to consider innovation in the art and instrumentation of disability evaluation, evolving professional practices, and changes in the legal landscape.
- The Use and Purposes of Documentation
- Definitions of Disability
- Foundational Principles of Documentation Review and Accommodation Determination
- Seven Essential Elements of Quality Disability Documentation
- Recommendation for Creating Disability-Specific Documentation Guidelines
** AHEAD is interested in member feedback in all its practices and plans on-going refinement of its best practices information. If you have comments, suggestions, or concerns with the information presented here, please e-mail the Board at firstname.lastname@example.org . We are a stronger Association as a result of the collected wisdom of our membership.
THE USE AND PURPOSES OF DOCUMENTATION
Laws that protect individuals with disabilities from discrimination and mandate the availability of accommodations to ameliorate the impact of the disability are in place in most countries. In order to determine whether an individual is entitled to these protections, post-secondary institutions typically require objective evidence (documentation) that verifies that the individual's condition fits the locally (and for that local, legally) accepted definition of "disability".
Documentation serves two primary purposes in postsecondary education:
- To establish protection from discrimination:
Non-discrimination is an assurance that individuals with disabilities will not be excluded or provided lesser access to programs and activities based on assumptions rooted in stereotype or perception of ability that are not based in fact. Non-discrimination also provides freedom from harassment based on perceptions of disability.
Documentation needed only for protection from discrimination based on disability can be quite brief. A diagnostic statement from an appropriate professional, a past history of recognition as a person with a disability or even self-identification that indicates how others might regard the individual as having a disability could suffice as the basis for protection from discrimination.
- To determine the accommodations to which the individual may be entitled
Reasonable accommodations include modifications to policy, procedure or practice and the provision of auxiliary aids and services that are designed to provide equal access to programs and services for qualified individuals with disabilities. Accommodations are reasonable when they do not fundamentally alter the nature of a program or service and do not represent an undue financial or administrative burden.
Disability documentation for the purpose of providing accommodations must both establish disability and provide adequate information on the functional impact of the disability so that effective accommodations can be identified. In the context of postsecondary education, documentation should provide a decision-maker with a basic understanding of the individual's disability and enough information to anticipate how the current impact of the disability is expected to interact with the institution's structure of courses, testing methods, program requirements, etc.
Definitions of Disability
Definitions of disability differ widely both between countries and across contexts within individual countries. A cluster of widely accepted international definitions have evolved. First published in 1980, the World Health Organization's International Classification of Functioning, Disability and Health (ICF) is widely accepted for research and policy development and often used at an institutional level to verify status as a person with a disability. The ICF identifies three levels of human functioning: the body (or body part), the whole person, and the whole person in a social context. Disability is defined as dysfunctioning at one or more of these same levels: impairments, activity limitations and participation restrictions.
Established by the U.N. in 1982 to support the full and effective participation of persons with disabilities in social life, promote equal access to employment, education, information, goods and services; and protect the dignity of persons with disabilities, The World Program of Action for Disabled Persons emphasizes that disability is socially created and not simply an attribute of the individual. Disability results from a dynamic interaction between health conditions and other personal factors (such as age, sex, personality or level of education) on the one hand, and social and physical environmental factors on the other hand.
Building on this definition, the Working Group drafting the U.N. Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities developed the following definition: "Disability: the loss or limitation of opportunities to take part in the life of the community on an equal level with others due to physical, social, attitudinal and cultural barriers encountered by persons having physical, sensory, psychological, developmental, learning, neurological or other impairments (including the presence in the body of an organism or agent causing malfunction or disease), which may be permanent, temporary, episodic or transitory in nature."
Elements of these international definitions can be seen in the laws and customs of individual countries and lead the service provider to the types of information necessary to evaluate the presence of a disability and understand its impact in context. Examples:
- The United States Americans with Disabilities Act (ADA) defines "disability" as "having a physical or mental impairment that substantially limits one or more of the major life activities". The ADA protects individuals from discrimination if they have a record of such impairments or if they are regarded as having such impairments. Additionally, specific protections are guaranteed through Section 504 of the Rehabilitation Act of 1973 (amended, 1978).
- The Canadian Charter of Human Rights recognizes medically certified conditions and injury as disabling factors and includes them as prohibited grounds of discrimination. While the only legislation that explicitly defines disability is the Employment Equity Act, Canadian laws are designed to protect persons with both mental and physical disabilities against discrimination and to ensure accessibility to persons with disabilities.
- In the United Kingdom, the Disability Discrimination Act (DDA) defines a disabled person as someone with "a physical or mental impairment which has a substantial and long-term adverse effect on his ability to carry out normal day-to-day activities." Protection from discrimination, the right to reasonable accommodations and the obligation to make permanent physical adjustments to premises are all components of the DDA.
Foundational Principles for the Review of Documentation and the Determination of Accommodations
AHEAD presents the following principles as the foundation for policies and best practices used by postsecondary institutions as they establish disability documentation guidelines and determine accommodations for students with disabilities.
- All documentation should be reviewed on an individual, case-by-case basis
This calls for an individualized inquiry, examining the impact of a disability on the individual and within the specific context of the request for accommodations. There is no list of covered disabilities or accepted diagnostic criteria. Institutional documentation policy should be flexible, allowing for the consideration of alternative methods and sources of documentation, as long as the essential goal of adequately describing the current impact of the disability is met.
- Determination of a disability doesn't require the use of any specific language
Service providers should avoid elevating form over substance in documentation guidelines, e.g., the temptation to require specific language, such as "learning disability". Clinicians' training or philosophical approaches may result in their use of euphemistic phrases, rather than specific diagnostic labels; this practice should not be automatically interpreted to suggest that a disability does or does not exist.
- Presented documentation can be augmented through interview
Service providers are encouraged to contact the evaluator, as necessary, for clarification of any information (test results, conclusions, recommendations, etc.) contained in documentation. An interview, filtered by the service provider's professional judgment, is extremely valuable in substantiating the existence of a disability, understanding its impacts and identifying appropriate accommodations.
- Determination of accommodations is an interactive process
The individual with a disability is an excellent source of information on strategies that maximize access. In the context of documentation and accommodation planning, the individual is a rich, reliable, and valid source of information on the impact of the disability and the effectiveness of accommodations. The individual with a disability may be provided with his or her first choice of accommodation or an alternative, effective accommodation determined by the institution. While objective confirmation (documentation) is legitimate, so are the lived experiences of individual.
- Documentation of a specific disability does not translate directly into specific accommodations
Reasonable accommodations are individually determined and should be based on the functional impact of the condition and its likely interaction with the environment (course assignments, program requirements, physical design, etc.). As such, accommodation recommendations may vary from individual to individual with the "same" disability diagnosis and from environment to environment for the same individual.
- Disability documentation should be treated in a confidential manner and shared only on a need-to-know basis
Disability-related information should be collected and maintained on separate forms and kept in secure files with limited access.
- Information on the individual's disability is only one component of providing access
Many barriers to full participation reside in the environment (physical, curricular, attitudinal, informational) where proactive redesign can favorably impact sustainable access. Service providers are encouraged to work to increase overall accessibility through system change that makes the institution more inclusive and reduces the need for individual accommodation.
SEVEN ESSENTIAL ELEMENTS OF QUALITY DISABILITY DOCUMENTATION
The dimensions of good documentation discussed below are suggested as a best practices approach for defining complete documentation that both establishes the individual as a person with a disability and provides a rationale for reasonable accommodations. By identifying the essential dimensions of documentation, institutions allow for flexibility in accepting documentation from the full range of theoretical and clinical perspectives. This approach will enhance consistency and provide stakeholders (students, prospective students, parents and professionals) with the information they need to assist students in establishing eligibility for services and receiving appropriate accommodations.
Users of this document are encouraged to also review AHEAD's best practice information on the Purpose and Use of Documentation and the Foundational Principles for the Review of Documentation and the Determination of Accommodations
- The credentials of the evaluator(s).
The best quality documentation is provided by a licensed or otherwise properly credentialed professional who has undergone appropriate and comprehensive training, has relevant experience, and has no personal relationship with the individual being evaluated. A good match between the credentials of the individual making the diagnosis and the condition being reported is expected (e.g., an orthopedic limitation might be documented by a physician, but not a licensed psychologist).
- A diagnostic statement identifying the disability
Quality documentation includes a clear diagnostic statement that describes how the condition was diagnosed, provides information on the functional impact, and details the typical progression or prognosis of the condition. While diagnostic codes from the Diagnostic Statistical Manual of the American Psychiatric Association (DSM) or the International Classification of Functioning, Disability and Health (ICF) of the World Health Organization are helpful in providing this information, a full clinical description will also convey the necessary information.
- A description of the diagnostic methodology used.
Quality documentation includes a description of the diagnostic criteria, evaluation methods, procedures, tests and dates of administration, as well as a clinical narrative, observation, and specific results. Where appropriate to the nature of the disability, having both summary data and specific test scores (with the norming population identified) within the report is recommended.
Diagnostic methods that are congruent with the particular disability and current professional practices in the field are recommended. Methods may include formal instruments, medical examinations, structured interview protocols, performance observations and unstructured interviews. If results from informal, non-standardized or less common methods of evaluation are reported, an explanation of their role and significance in the diagnostic process will strengthen their value in providing useful information.
- A description of the current functional limitations
Information on how the disabling condition(s) currently impacts the individual provides useful information for both establishing a disability and identifying possible accommodations. A combination of the results of formal evaluation procedures, clinical narrative, and the individual's self report is the most comprehensive approach to fully documenting impact. The best quality documentation is thorough enough to demonstrate whether and how a major life activity is substantially limited by providing a clear sense of the severity, frequency and pervasiveness of the condition(s).
While relatively recent documentation is recommended in most circumstances, common sense and discretion in accepting older documentation of conditions that are permanent or non-varying is recommended. Likewise, changing conditions and/or changes in how the condition impacts the individual brought on by growth and development may warrant more frequent updates in order to provide an accurate picture. It is important to remember that documentation is not time-bound; the need for recent documentation depends on the facts and circumstances of the individual's condition.
- A description of the expected progression or stability of the disability
It is helpful when documentation provides information on expected changes in the functional impact of the disability over time and context. Information on the cyclical or episodic nature of the disability and known or suspected environmental triggers to episodes provides opportunities to anticipate and plan for varying functional impacts. If the condition is not stable, information on interventions (including the individual's own strategies) for exacerbations and recommended timelines for re-evaluation are most helpful.
- A description of current and past accommodations, services and/or medications
The most comprehensive documentation will include a description of both current and past medications, auxiliary aids, assistive devices, support services, and accommodations, including their effectiveness in ameliorating functional impacts of the disability. A discussion of any significant side effects from current medications or services that may impact physical, perceptual, behavioral or cognitive performance is helpful when included in the report. While accommodations provided in another setting are not binding on the current institution, they may provide insight in making current decisions.
- Recommendations for accommodations, adaptive devices, assistive services, compensatory strategies, and/or collateral support services.
Recommendations from professionals with a history of working with the individual provide valuable information for review and the planning process. It is most helpful when recommended accommodations and strategies are logically related to functional limitations; if connections are not obvious, a clear explanation of their relationship can be useful in decision-making. While the post-secondary institution has no obligation to provide or adopt recommendations made by outside entities, those that are congruent with the programs, services, and benefits offered by the college or program may be appropriate. When recommendations go beyond equitable and inclusive services and benefits, they may still be useful in suggesting alternative accommodations and/or services.
RECOMMENDATIONS FOR CREATING DISABILITY-SPECIFIC DOCUMENTATION GUIDELINES
While it is not practical or desirable to create specific protocols for documenting every possible condition that might be considered a disability, institutions may choose to establish preferred profiles for the more common conditions. In doing so, AHEAD strongly encourages them to incorporate the Seven Essential Elements of Quality Disability Documentation in order to:
- help ensure that all documentation guidelines are consistent,
- offer direction for the case-by-case review of documentation that doesn't fit the established protocol for a specific disability,
- clarify specific guidelines for diagnosticians, and
- provide information to individuals seeking services.
Preferred profiles for disability-specific guidelines are more helpful when they request information that describe the condition, validate the need for accommodation AND include information to support educational planning. They also should anticipate accommodation needs in new contexts and facilitate referrals to outside services and agencies.