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Monday, September 04, 2006

Issues, Concerns, and Impact of Disability in Service Delivery and Program Planning

In 1990 the Americans with Disabilities Act became law, creating a legal duty to accommodate the disabled in all segments of society including the provision of health education, information, and related services. As with any new legislation, a great deal of concern has arisen regarding the practical implementation of services. Key issues include:
· How to deliver services for a specialized population without cutting programs for everyone…especially on restricted budgets.
· How much will accommodation cost?
· Is there enough need or interest to warrant the effort?
· What types of accommodations can be made for various disabilities?
· Where can one go for information and advice?
· How can one remain competitive and productive while complying with the law?
Although most people have a general concept of the terms "disability" and "handicap", a definitive meaning has yet to be established among professionals. This lack of clarity confounds the issues related to service provision as it is often unclear exactly who qualifies as disabled. To establish a fundamental understanding of the terms, the Disabled People International (DPI) definition will be used. According to the DPI (cited in Gianni, 1996), "disability" is the functional limitation within the individual caused by physical, mental, or sensory impairments". These conditions are deemed disabling by diagnosis. "Handicap" is defined as the loss or limitation of opportunities to take part in the normal life of the community on an equal level with others due to physical and social barriers. A handicapping condition is therefore related to the relationship between an individual and his or her community. To understand the level of handicap, it is imperative to examine the individual affected by the disability, the social response to the disability, and the actual physical environment. Combined, the internal, social, and physical environments determine the degree of handicap. Accordingly, an impairment which leads to a functional disability in one set of circumstances may not lead to a functional disability under a different or "enabling" set of circumstances. The concept of environment is central to determining the level of handicap. It becomes even more important in determining what may (or may not) be considered an appropriate program planning response in relation to the Americans with Disability Act (ADA), the Individuals with Disabilities Education Act (IDEA), and other governing legislation.
Understanding the broad range of functional capacities, expectations, and needs of the disabled population promotes a proactive stance toward program planning that includes disabled persons. Statistically relevant categories include gender, age, and socioeconomic status. Furthermore, the diagnosis of disability may be that of "work" disability or "severe" disability. A work disability is a health condition (physical, mental, or cognitive), which limits the type or amount of work performed. A severe disability is defined as "an inability to perform one or more socially defined roles or tasks." (Census, 1990). Severe disabilities are sub-divided into "functional activities" and "activities of daily living". A functional activity is classified into six primary categories including seeing, hearing, speaking, lifting and carrying, climbing stairs, and walking. An activity of daily living consists of six categories including getting around inside the home, getting in or out of a bed or chair, taking a bath/shower, dressing, eating and toileting. (Census, 1996).
It is estimated over 160 million family members are also affected by the disability of a loved one. (Census, 1996). Due to the high rate of disability among the population and the increased likelihood of acquiring a disability in an aging society, health education cannot afford to ignore the needs of the disabled. Given the demographic shift in population growth, issues of disability becomes a question of "when" more often than "if". Program planning for the disabled is NOT for a select few, but rather an essential measure designed to reach nearly 1 out of every 5 persons in the community. Given an "enabling" environment and opportunity for minimization of a handicap the question of productivity and competitiveness becomes a question of viability and the ability to "tap the market". The disabled population, by virtue of sheer numbers, is becoming an important market segment.
Categories
Just as other market segments, the disabled are a diverse population. According to popular business theorist such as "Megatrends" author John Naisbett or computer guru Bill Gates, in modern society there exists what superficially resembles a paradox. The unity of a group represents power and influence while the singularity of the individual demands recognition and respect. This has lead to the individualization of mass produced information and products. One example of this trend in the information industry is "tailored" newletters available via the internet. By identifying the preferences and needs of the consumer, information is filtered and delivered to the consumer. Taken a whole, the disabled population represents a force for change and business recognizes the emerging market. As individuals, those needs cannot be met by a "one size fits all" approach. Given the technological advances of recent years, "personalized" service is becoming the expected norm. This trend is strongly represented in the healthcare industry…from "birthing rooms" and other amenities, the needs and preferences of health consumers is generating unique programs around the country. In the provision of health education, promotion, and prevention services this becomes critical. Access, Health and Safety, Prevention, Types and degrees of disabilities, Prevention of secondary disabilities, and Inclusion are just a few of the key concerns when quality of service is analyzed.
Disabilities are categorized into three main groups:
1. Physical: visual, hearing, and motor impairments
2. Cognitive: developmentally delayed and degenerative conditions
3. Mental/Emotional: including substance abuse and depression
Although it is not feasible to plan for every disability, it is possible and necessary to accommodate the expected needs shared by the majority of disabled persons.
Constraints
The delivery of meaningful services requires an understanding of various constraints experienced by a disabled person. Three types of constraints predominate:
1. Intrapersonal
2. Interpersonal
3. Structural
According to Crawford and Godbey (1987), "intrapersonal" constraints are due to psychological barriers originating within the individual which hinder participation. Examples may include fear, denial, feelings of inadequacy or self-consciousness. "Interpersonal" constraints are those involving interaction or relationships with other persons. Examples may include transportation, money, obligations, or bias. "Structural" constraints are those directly related to the physical facilities and accommodations provided. Examples include installation of ramps or accessible housing. Structural changes are perhaps the most obvious forms of accommodation and in some respects, the most easily enacted. Walls of brick and mortar are often weaker than those built of prejudice and discrimination.
Program Planning
Definitions and statistics serve only as a foundation to build upon but little is gained if proactive program planning is not implemented. According to Brandenburg, et al. (1982) four categories must be present for a persons to participate in specific leisure/health related activities. There must be opportunity (including factors such as "geographical accessibility", transportation, and access to resources), knowledge, the family and friends must be supportive, and there must be receptiveness/desire on the part of the individual. Given the opportunity, access, and social approval to participate in a given experience either encourages or discourages an individuals receptiveness towards participation. This is true whether one is disabled or not, however, the disabled individual is more likely to encounter a negative experience due to lack of opportunity and/or access and either real or perceived social barriers. According to the U.S. Census and Lou Harris poll, the leisure participation of many persons with a disability is dismal. For example:
· Almost 65% of persons with a disability (PWD) did not go to a movie in the last year.
· 75% did not see a live performance.
· 65% had not been to or participated in any sporting event.
· 17% Never eat in restaurants.
· 13% Never shop in grocery stores.
These statistics present only a fraction of the story. Evidence supports the relationship between health and income…between leisure and income…between education and income. However, this does not preclude those activities. It could be argued that health or leisure or information does not cost money. That does not account for the issue of access and co-existing constraints associated with poverty…and poverty is a primary concern for the disabled. According to testimony presented to the Congressional Committee during the ADA findings, disabled persons are the poorest and largest minority group in the U.S. The scope of findings is to large for consideration in this paper, however, the significance of poverty cannot be overlooked when providing/planning services for disabled persons. But poverty alone does not explain the lack of participation among disabled persons. Structural and social barriers must be examined in light of inclusion of disabled persons.
Despite the legal provisions regarding accessibility, structural constraints remain a problem. Dilapidated and poorly maintained facilities pose mobility constraints. Compliance standards related to private industry regulate the building of new structures and those undergoing renovation but do not mandate access for existing structures. Transportation, computer, and other access issues remain problematic for millions of disabled persons.
Social constraints between disabled persons and others remain a major obstacle. Despite legal mandates addressing equality for disabled persons, they are largely "unseen". Unemployment of disabled persons far surpasses all other segments of the population. According to the census, 65% of all disabled persons and 85% of severely disabled persons are unemployed among those seeking work. The loss of health insurance, retirement, and other benefits; the loss of "networking" or opportunities for socialization, financial, and structural constraints further hinder participation opportunities among the disabled population. The cumulative effect is the "oversight" of a large segment of the population with profound results on the level of independence and quality of life/health of these persons. Taken as an entity, the disabled are often a poorly understood segment of the population. Stereotypes, misinformation, and ignorance is reinforced by the lack of socialization. It is little wonder social barriers remain. Although progress has been made, antidotes of exclusion and confusion abound. So great is the problem that book, articles, and training seminars have become popular educational tools designed to ease the communication process between the disabled and non-disabled. Some disabled organizations feel "protection from" the disabled has been given more attention than "protection of" the disabled. Lack of exposure to persons with disabilities has led to a profound lack of understanding and the (mis)conception that the problem is insignificant or affects only a limited segment of the population.
Accommodation vs. Integration
Accommodate (n)1. An accommodating or being accommodated; adaptation; adjustment. 2. Reconciliation of differences. 3. Willingness to do favors or services.
Accommodation for disabled persons generally includes minimization of structural barriers and the provision of services for "special" populations. Just for a moment, examine the definition of accommodation taken from Websters Dictionary. Note the terminology referring to "differences" and "favors". What a unique manner to describe consumers of services! While it is true that persons with disabilities pose variations to standard operating methods, it is doubtful other market segments would be described in such a manner. Rather, the ability to target the "differences" and met needs is generally defined as a marketing strategy. Semantics are recognized as powerful tools in any business. The underlying message is that the disabled are "different" and accommodation is a "favor". This has lead to a minimization approach to program planning and service delivery where accommodation is viewed as a "cost" rather than an "investment". The concept applies to both private and public service providers especially given private/public partnerships and the entrepreneurial atmosphere necessitated by budget constraints.
Integration
Integration (n) 1. An integrating or being integrated 2. The bringing together of different groups into free and equal association 3. The organization of various traits, feelings, and attitudes into one harmonious personality.
Integration goes beyond accommodation. Integration not only provides accessibility but recognizes the disabled population as a valuable "untapped" market segment. Provision of services is not limited to "special" programs but rather includes disabled persons in "normal" programs. This does not omit programs geared toward the disabled, but "special" programs become just that…special or supplemental. Just as "womens" nutritional programs are designed to supplement (as opposed to replace) standard nutritional programs, the segmented programs for disabled persons should be used as supportive experiences rather than primary experiences. By adopting an integration policy, an agency is able to offer a greater variety of choice and save money. Because programs are designed to integrate disabled and non-disabled populations it is not necessary to spend time and labor in the design and implementation of two programs of service. Research demonstrates that when accommodations are included at the time of construction, less than 1/2 of 1% is added to the total cost of construction! Approximately 50% of accommodations for the disabled will cost less than $50.00! (ADA Law, 1996). Imagine an investment of 1/2 of 1% in order to potentially reach an additional 20% of a target population. In knowledge based initiatives that amount may be even less. Take for example the use of computer based training or information dissemination via the web. Proper web design ensures access with minimal expenditures. In contrast to the concept of accommodations where semantics such as "favors" lead to the erroneous conclusion of "cost" being "spent", the concept of integration views' provision of services to the disabled as an "investment" with potentially large returns.
Evidence supports the continuation of this trend.
· Life expectancy has dramatically increased since the early 1900's.
· Although the population of Americans aged 65 to 74 will increase less than 20% between 1977 and 2000, the 80 and older age group will increase by 67%. (Teague, 1992).
· In the early 1900's less than 1% of the average life-span was spent enduring a terminal illness. Today 10% of the average persons life-span is spent with a terminal illness. (Teague, 1992).
Research Needs
The Office on Disability and Health has identified four areas of future research related to the provision of health services to the disabled;
1. A national disability surveillance system.
2. The development of the public health science of disability
3. Developing and evaluating cost effective interventions.
4. Developing measures of participation and identifying elements affecting activities of daily living. (ODH, 1998).
Individual Needs
Just as "Health" is not static neither is "Disability", rather it is a dynamic process. The following represent areas in need of further research:
· Secondary injury/illness prevention targeting disabled segments of the population.
· Identification of barriers and constraints to services.
· Capitalizing on available technology to avoid/minimize pain, preserve energy, and prevent problems associated with a disability.
· Access to information and services.
· Increasing awareness to the needs, services, and resources.
· Sex education, drug prevention and other educational services targeted to disabled students.
The Role of AT
Assistive Technology is one measure of providing services and information to disabled clients but more than that, it is also a primary mode of communication and interaction for many disabled clients. As such, it is necessary to ensure proper interface and compatibility.
Potential uses of AT in school health settings include:
· Interacting with students with disabilities in the classroom, the internet, and public.
· Designing effective health education materials through the use of AT options for disabled students. For example, using audio-visual materials with learning disabled students.
· Mainstreaming disabled students into the classroom.
· Ensuring access to programs and services offered.
Potential uses of AT in public health settings include:
· Prevent/Reduce secondary disabilities: For example, reducing the incidence of urinary tract infections among quadraplegic individuals.
· Prevent/Reduce primary disabilities: For example, reducing the incidence of falls among the elderly.
· Maintain independent and safe living conditions: For example, monitoring health status via telecommunications from home to office.
· Design and implement sex and drug education courses for disabled children and adults.
· Ensure public sites are truly accessible…including virtual/internet sites.
These and many other examples highlight only a few potential areas of impact for AT in health education services.
Where to begin
There is a great deal of work to be done in the area of disability and the use of AT in heath education. Attitude and societal acceptance of disability rely upon open communication.
1. Change the perspective. Disability is not a disgrace. Understanding, proper planning, and frank communication is vital.
2. Understand the consumer. Development of a program is only as good as the planning stage. In an era that recognizes the importance of income, gender, ethnicity, and numerous other factors…it is long overdue to include the impact of disability…including "unseen" disabilities.
3. Change the language. People do not like to be labeled deficient. The language of disability is seeped in negative connotations. The words "disabled"(not able), "accommodation"(favors, ect.), "handicapped"(hand in cap referring to begging), and "invalid"(not valid) are just a few examples.
4. Change the media by which we address the consumer. Not all persons learn in the same manner, rate, or method. It is imperative effective modes of communication are utilized in consistent manner. It is inexcusable to spend millions of dollars producing movies glorifying violence when potentially life enhancing prevention messages are weakly supported by single page black and white brochures.
5. Change ourselves. Realize disability is a normal part of life for many people and one day for ourselves or a loved one.

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