The National Council on Disability (NCD), an independent federal agency working with the President and Congress to increase the inclusion, independence and empowerment of Americans with disabilities, has recently prepared two extensive reports for the federal government related to consumer choice in health care and promotion of accessibility and universal design.
Accessibility and Universal Design
Under its Congressional mandate, NCD is responsible for gathering information on the implementation, effectiveness and impact of federal laws, policies, programs and initiatives affecting the 54 million Americans with disabilities. One important area NCD has examined is implementation of amendments to Section 508 of the Rehabilitation Act of 1973, which requires the federal government to purchase accessibly designed electronic and information technology (E&IT). As a result of these amendments, accessibility has moved more to the forefront for companies wishing to do business with the federal government. NCD’s evaluation has revealed the impact of Section 508 both in companies whose longstanding accessibility programs have been reinvigorated by requirements of section 508, as well as other companies who did not begin thinking about accessibility until planning their response to the legislation.
Nevertheless, a serious deficit of knowledge remaining within industry and government hampers implementation of section 508. NCD cites instances of how products designed to be accessible sometimes do not meet the needs of users. For example, it found that users with disabilities are often asked to pay high prices for telephones with feature sets that are not useful to them. Additionally, rapid changes in technology often cause decreases in accessibility, and sales associates are often unfamiliar with accessibility features. Consequently, users are reluctant to adopt technologies that have proven frustrating to them in the past.
NCD details how designing with access in mind can significantly increase the size of targeted markets for E&IT, as good business practice dictates that designers and engineers avoid unintentionally excluding large populations of consumers. While people with disabilities have the highest risk of exclusion, other consumer groups also at risk include elderly individuals, consumers living in low-bandwidth information infrastructures, people who never learned to read, speakers of English as a Second Language, tourists and people living in multilingual societies.
Accessible design is a step forward when developing E&IT products, but it tends to lead to technologies that will be used separately or in addition to the main E&IT product, which is less effective than designing a product that is usable by all. Universal design (UD) is a process to ensure that E&IT is inclusive, accessible and usable by everyone. Incorporating UD processes when developing technology accommodates people with disabilities and also improves the usability of the products for the rest of the population. Unfortunately, NCD found that many business people have never heard of UD, and many of those who have do not understand that it is more than just a design concept that benefits people with disabilities.
An example of how UD would improve the usability of a product for everyone is the UD strategies proposed for ATM machines. Talking ATMs enable people with limited vision to privately experience the convenience of anytime banking. Although these devices are being developed for people who are blind, they can also accommodate the 440 million people in the top five geographic markets who cannot read. Similarly, ATM displays can sometimes be very difficult for the average person to use simply because of lighting issues, natural or otherwise. Sunlight often creates glare on electronic displays, making it impossible to even discern that any text appears on the display. Talking ATMs and large, sunlight-readable color displays increase usability for everyone. Design of larger, rubberized, concave keys with more space between them allows better differentiation of keys from each other by users who have vision or mobility-related disabilities, and also helps all users prevent their fingers from slipping and inadvertently activating adjacent keys.
Similarly, several UD adaptations to cell phones provide benefits for the general marketplace. Voice-activated dialing and cell phone programming, audio alerts of low battery level, and talking caller ID provide greatly improved accessibility for users who are blind, and are valuable convenience features for general users. Also, the option to customize ring tones so the phone rings differently for different callers is particularly useful for individuals who are blind, and certain ring tones may be more perceptible than others for the hard of hearing; this feature is also highly desirable for general users who wish to quickly evaluate the importance of interrupting a task to answer the phone. Similarly, vibrating alerts, visual indicators of an incoming call and text messaging are not only beneficial for users who are deaf or hard of hearing, but also for typical users who find themselves in noisy environments or in settings where sound would be disruptive.
A third technology, speech-recognition software, has improved accessibility in many applications for users with a range of disabilities and is seen as a valuable efficiency tool for consumers in the general market. Nevertheless, some limitations make voice or speech recognition software either inaccessible or difficult to use. People with difficulty forming speech may be affected most, but all groups may be challenged by getting the software trained, making accurate inputs, overcoming problematic voice characteristics and dealing with noisy environments. Among NCD’s recommendations for improved design are the following:
1 Inclusion of a dictionary that automatically suggests words resembling those not understood by the software, preventing the user from having to repeatedly attempt the speech input.
2 Noise filters that help prevent accidental and inappropriate input from background noise that may go undetected or may cause the user to enter a different mode than desired.
3 Availability of macros that can be used to enter frequently used groupings of information, such as names and addresses. One voice command would be used to enter the entire data set, greatly reducing the amount of verbal input required and reducing error.
4 Readback options that allow the user to get feedback on how the voice input has been interpreted. This feature would assist both users unable to receive visual information and those for whom it is not convenient to look at a computer screen for verification.
5 Ability to change voice types and speed of voice messages. Some voices are better understood by one user than by another. Similarly, a speed that is too slow for a particular individual can negatively affect productivity, but a faster speed may not be well understood by all users.
6 Ability to request additional time if more than the normal amount of allotted time is needed to complete individual transaction components.
The NCD report Design for Inclusion: Creating a New Marketplace educates designers and manufacturers about many specific ways that a variety of electronic and information technologies intersect with the needs of individuals with disabilities. It also documents successful UD development processes, explores the mainstream market for universally designed consumer products and services and provides businesses with the information about UD methods needed to make their complex products accessible in a cost-effective way.
Consumer Choice in Health Care
While the past 30 years have seen a revolution in the way disability is addressed in most social domains of American society, health care has lagged behind. America’s system of health care has traditionally maintained an institutional bias and has typically insisted that services be directed by health care professionals, with few options for the consumer as the primary director or decision-maker. Only recently has health policy shifted and explored models where care is delivered primarily in the community; funding and infrastructure for these models is still poorly developed. It is more recent yet that the idea of consumer choice broadened to embrace the concept that consumers can plan other aspects of their health care.
In 1999, the Olmstead Supreme Court decision provoked a wave of institution-to-community planning among states newly responsible for ensuring that Medicaid recipients would be provided health care in the most integrated setting appropriate. Following suit, the current administration has included consumer-direction as a pillar of its initiatives.
Scientific literature in the field of consumer-directed health care is limited. Many of the programs that test innovative models are too small to yield definitive data, and programs differ sufficiently from site to site, making comparison of data challenging. Neither funding nor leadership has been directed to the full-scale, multifaceted evaluation required to teach us what we would like to know about consumer-directed and consumer-oriented care for people with disabilities. Despite these limitations, enough has been learned to support important changes in the way we plan, implement and pay for the care of individuals with disabilities over the long term.
Because a deeper knowledge base is needed, NCD’s report Consumer-Directed Health Care: How Well Does It Work? makes research recommendations as well as recommendations for changes in direct service program design. The organization’s overriding recommendation is that consumers representing a wide range of disability perspectives must be included in decision making at every step in the process that ultimately shapes programs, from development and implementation of a research agenda through policymaking, program design, oversight and evaluation. Consumers provide a truly unique source of information about the human services and health care delivery system.
Among NCD’s recommendations for changes in the provision of services to people with disabilities are the following:
1 Establish a firm locus of responsibility within the federal government for programs and services related to the health and well-being of people with disabilities. NCD stresses that a new clearinghouse or committee will not be helpful; rather, a federal agency with programmatic and oversight responsibility is necessary.
2 Make recruitment, training and supervision of personnel for community-based and consumerdirected care options a first order of business for this new unit of government. Across the country, states are not able to implement institution-to-community changes because of severe shortages in trained personnel.
3 Do not build expectations of cost savings into the start-up of consumer-directed or consumer-oriented health care programs. New or modified program models may initially show increased costs but ultimately result in long-term efficiencies, savings or cost neutrality.
4 Break down barriers and create opportunities for cross-fertilization between narrow and arbitrarily defined disability sectors. While groups may differ in the nature and extent of their service needs, programs targeted to one group may be quite relevant for another. New programs should be designed to serve people across the disability spectrum, but with the flexibility to accommodate a range of individual needs.
NCD also had several important recommendations for the research agenda for consumer-directed and consumer-oriented health care:
1 Create a national stakeholder group to define critical terms in research on consumer-directed and consumer-oriented care. Such terms as consumer-oriented, consumer-directed, disability, satisfaction, personal care assistance, and choice should be defined, promoting clarity and comparability across studies.
2 Develop guideline for the design of federally funded research and evaluation studies in this field. In the area of cost, for example, federally funded programs should require that costs to consumers, as well as costs to government and other institutional payers, be taken into account in measuring cost or costeffectiveness of different program models. The overwhelming role of families and individuals in paying for long-term care and the risk of cost-shifting to families as care moves out of institutional and into community settings makes it particularly critical that research in evaluating costs follow well-defined guidelines.
3 Include measures of quality of life among outcomes studied in program evaluation. Currently many studies ask consumers if they are satisfied with the services they are receiving, but this one-dimensional question does not capture the full range of their preferences. Consumers working with a community agency may prefer the agency’s direction of their health care to institutionalization, yet still desire a greater degree of control over their health care services.
4 Include measures of mental health in evaluation studies on consumerdirected care. NCD found no studies that looked at the mental health of clients as an outcome of consumer-directed care. Given the important impact of depression on overall health and well-being and the significant cost of depression treatment, this is a critical gap in current knowledge.
5 Include individuals with primary mental health diagnoses in evaluation studies. NCD did not find a single study that examined the impact of consumer-directed care on people with mental illness. There is no theoretical justification for this omission.
6 Strengthen the efforts of the nation’s consumer-directed research to include a stronger focus on family. Federal agencies’ research efforts must recognize America’s families, not only in the role of caregivers but also in the planning, management, and delivery of services and supports sustaining consumer-directed efforts to empower individuals with disabilities to achieve their potential and enjoy the fruits of their civil rights like any able-bodied citizens.
Taken as a whole, these recommendations imply a major shift in the way government, private agencies, and even to some extent consumer organizations think about organizing, locating and managing health care for people with disabilities. They imply a movement away from a narrow diagnosis-focused approach with a limited range of service options to a cross-disability, lifespan approach in which funds are available to meet individual needs. They imply a shift in the role of government from oversight of tightly defined program options to one of broader responsibilities: supporting development of a knowledge base, ensuring that consumer needs are assessed on an ongoing basis across disability groups and age categories, making sure gaps are filled in the service continuum and guaranteeing that programs meet rigorous evaluation standards that include not only health and mental health but also quality of life and satisfaction with services.
National Council on Disability