The company accommodates me so I can feed my two children and pay my taxes.

David Vice, Mechanic
Indiana
1995
(NCD ADA Report, p. 85)

Before ADA, I could go to a job interview and the employer could say, "We won't hire you because you're disabled," and I had no legal recourse.

Tim Harrington
Ohio
1995
(NCD ADA Report, p. 13)

Together with exciting new technology, improved rehabilitation techniques, better education and changing public attitudes, real work for real wages is more than a dream; it can be a reality.

Susan M. Daniels
Social Security Administration
1995

People with disabilities want to work. When people with disabilities work, the economy benefits. When people with disabilities work, our society is enriched. However, the overriding message sent to people with disabilities through our public policies is that they are not expected to work. Public policy most often creates a path to premature retirement for people with disabilities, not one to rehabilitation and work. Over 95 percent of federal funds spent on people with disabilities are targeted for supporting dependency. Little is spent on supporting people in pursuing and maintaining employment. Too often, health insurance is accessible for people with disabilities only if they do not work. The national employment policy agenda has never included people with disabilities.

Despite accomplishments in medical rehabilitation, technology, education, and civil rights, it should not come as a surprise that the employment rate among people with disabilities has not increased in the last decade. For most people with disabilities, the barriers to working remain significant and working is too often an irrational choice. Entry-level minimum-wage jobs rarely pay enough for an individual with significant disability-related needs to be able to live on the income and meet those needs. Essential services, such as personal assistance and assistive technology, are often subsidized only through public health insurance, which is generally available only to people who are not working. Private health insurance often precludes coverage for preexisting conditions and offers minimal coverage for mental health needs and long-term supports and services. While there is a well-established and well-funded system to support people with disabilities in dependency, there is relatively little support for their efforts to be independent.

Employment Rate

People with disabilities remain significantly less employed than they would like to be, and significantly less employed than other Americans. Polls conducted by Lou Harris and Associates in 1986 and 1994 reveal that two-thirds of working-age people with disabilities are not working. An overwhelming majority who are not working (66 percent in 1986 and 79 percent in 1994) indicate that they want to work. Data from the Current Population Survey of 1995 confirm that the employment rate of people with disabilities has remained consistently low over the last decade. In 1995, only 28 percent of the 16.8 million working-age noninstitutionalized Americans with work disabilities were employed, while 75 percent of working-age Americans without disabilities were employed.

Women and minorities with disabilities face dual discrimination and employment challenges. Their employment rates have consistently been lower than those for men and Whites with disabilities. African Americans represent a significantly larger proportion of working-age people with disabilities than do Whites or Hispanics, and as a group they are more severely disabled. While the full-time employment rate for Whites with disabilities was 15.9 percent in 1992, it was 7.2 percent for African Americans and 8.2 percent for Hispanic Americans (Braddock and Bachelder 1994). The earnings of women with disabilities with full-time jobs were only 65 percent of the earnings of men with disabilities who were employed full-time (Bowe 1992). Women with disabilities are more frequently employed part-time, rather than full-time, than men with disabilities. Integrated employment opportunities in sheltered employment are less available to women than men (Blanck 1991), as are promotion opportunities (Blass and Elliott 1993).

Employment Statistics

The Bureau of Labor Statistics in the Department of Labor (DOL) and the Census Bureau in the Department of Commerce regularly collect, analyze and disseminate employment data aggregated on the basis of gender, race, ethnicity, age and geography. No such data are collected or reported for people with disabilities. The most frequently cited data about the employment of people with disabilities are gathered from the March supplement to the Current Population Survey. These data are collected only once a year, whereas for other groups they are collected and reported monthly. Furthermore, the question used to determine the employment status of people with disabilities was not designed for the purpose of tracking employment.

Public Policy: Too Often a Path to Premature Retirement

The vast majority of adults with disabilities become disabled as adults, many while they are working. The response to this adult onset of disability generally comes through the state workers' compensation system or the private disability insurance system (car insurance, short-term and long-term disability insurance). Too often these systems emphasize compensation for the acquisition of a disability and retirement from the workforce. Retirement is sometimes inadvertently promoted by emphasizing the extent of an impairment and the residual dysfunction. There is rarely motivation to assess the individual's functional capacity and productivity with appropriate accommodations. There is little sustained long-term focus on returning to work or retaining the individual at work. As gatekeepers to most benefit-providing systems, medical doctors focus on medical assessments and documentation of disability. Little attention is given to long-term vocational assessments or accommodations that would enable employment. By focusing on the disability rather than the ability, our national disability policies and programs leave many employment opportunities unrealized.

Throughout the years, national employment policies and initiatives have often promoted full employment throughout the nation and offered training, job placement, reeducation programs, employment services, unemployment services, etc. People with disabilities have never been routinely considered as a potential part of the labor force and as part of large-scale training, education and employment initiatives for the general workforce. Disability is poorly understood and communicated in the nation's larger employment policy agenda. The implicit assumption is that people with disabilities are not expected to be part of the workforce.

Labor Market Trends

People with disabilities are disproportionately affected by labor market trends. While the labor force participation of men has declined steadily since the 1970s, the largest decline has been among disabled men aged 55-64 (Yelin 1993). Women's labor force participation has steadily increased since the 1970s; however, the increase has been less for women with disabilities than for women without disabilities (Yelin 1991). The level of full-time employment for workers without disabilities has remained relatively constant over the last several years, while it has decreased for workers with disabilities. Part-time employment has increased for both disabled and nondisabled workers, though it has increased more for workers with disabilities (Yelin and Katz 1994).

Economic restructuring and the changing nature of work provide both opportunities and challenges for people with disabilities. The increasing use of telecommunication via fax machines and the Internet has led to more liberal work-at-home policies by employers and an increase in entrepreneurship and self-employment. Such developments hold promise for people with disabilities who are skilled and educated. They are appealing to people who find the rhythm of the traditional 9 to 5-work setting incompatible with their disability-related needs. However, such trends may also reduce job opportunities for less skilled workers (Lewin-VHI 1995).

Barriers and Disincentives to Work

The factors that contribute to the low employment rate for people with disabilities are many. Access to private health insurance is increasingly cited as the key obstacle to employment, particularly in light of the increase in part-time work, which rarely brings access to health insurance. With underwriting practices, preexisting-condition exclusions and limits on benefits acting as critical disincentives, many people with disabilities seek Social Security benefits in order to gain access to public health insurance. However, current discussions about revising Medicaid and Medicare may result in closing this route of access to public health insurance. As jobs become increasingly less secure, because of downsizing and merging trends, people with disabilities may find the relative security of benefits even more appealing.

Other barriers to work cited by people with disabilities include loss of benefits; disincentives to work in benefit programs; lack of access to personal assistance services; lack of access to assistive technology; inadequate education, work experience and vocational rehabilitation; inadequate transportation; inadequate housing; negative attitudes; inaccessible transportation, housing and work sites; discrimination; and lack of opportunities for career advancement (Braddock and Bachelder 1994).

Vocational Rehabilitation and Other Federal Employment Programs

The federal and state vocational rehabilitation program has been the government's key response to the employment of people with disabilities since 1920. Over the years smaller discretionary programs, such as supported employment and projects with industry, have been developed to further target employment for people with disabilities. The 1992 Amendments to the Rehabilitation Act required state vocational rehabilitation agencies to provide for the individual's choice of services and service providers; to focus on careers, not just entry-level jobs, and to presume that most individuals with disabilities are employable. Because resources are not sufficient to serve all who apply, priority is given to those with the most severe disabilities. In addition, states develop an order-of-selection priority, which determines who will be served in each state. With approximately $2.3 billion in federal funds, targeted employment services programs for working-age adults with disabilities serve about 1 million individuals per year, placing about 200,000 per year in employment. Despite their successes, targeted employment programs for people with disabilities have never made a noticeable impact on the employment rate nationwide.

Generic employment and training programs in the DOL report that they serve thousands of people with disabilities every year through the Job Training Partnership Act, the Employment Services Office and veterans programs. Despite the fact that these programs are covered by the Americans with Disabilities Act (ADA), many people with disabilities report that they have difficulty accessing services through generic programs. They report that the services they need may not be available or accessible and that the programs do not see it as their role to serve people with disabilities.

The 1994 Lou Harris poll of 1000 people with disabilities reported that employed adults with disabilities were much more likely to have found their jobs through personal contacts than through structured services. Only 4 percent reported that special programs for people with disabilities had assisted them in finding employment, while 5 percent reported that generic employment services had assisted them in finding a job.

Supported Employment

The concept of supported employment emerged in the early 1980s as a response to dissatisfaction with the unemployment of people with developmental disabilities or their segregation in day activity programs and sheltered workshops with low or no wages. As evidence emerged about the capabilities of people with significant developmental disabilities to work and live successfully in the community, people with disabilities, their advocates and progressive policy makers developed a national initiative to promote jobs in the community with individualized support. After a decade of investment and implementation, over 110,000 people have had access to supported employment, with an annual federal investment of over $40 million (Mank in press). The majority of individuals with significant developmental disabilities remain placed in segregated facility-based sheltered workshops and adult day programs. Supported employment has often become an "add-on" to these services. The extended supports are not available to enable Social Security beneficiaries to use supported employment as a route to leaving Social Security benefit rolls. Efforts to change systems in states have produced only modest local changes.

The Private Sector

Polls repeatedly indicate that employers support the employment of people with disabilities and experience people with disabilities as good employees. A 1995 poll of 300 chief executive officers and human resource managers in Fortune 5000 companies found that 73 percent of the top industries across the country are currently hiring people with disabilities. Most reported that ADA has had a positive impact on corporations; only 16 percent believed it has had a negative effect (President's Committee on Employment of People with Disabilities [PCEPD] 1995). Lou Harris and Associates surveyed employers in 1986 and again in 1995 and found strong support for ADA and the employment of people with disabilities. The employment antidiscrimination provisions of ADA apply to 666,000 businesses employing about 86 million people.

The percentage of companies reporting that they have made accommodations in the workplace increased from 51 percent to 81 percent between 1986 and 1995 (Lou Harris and Associates 1995). Furthermore, the costs of accommodations did not appear significant, with about half of employers saying costs increased a little between 1986 and 1995 and 32 percent reporting no increase. The Job Accommodation Network operated by PCEPD to assist employers in developing specific work accommodations has consistently reported that the majority of accommodations cost less than $500. One case study of Sears, Roebuck and Co. (Blanck 1994a) found that 97 percent of accommodations involved little or no cost.

Analysis of one national data set indicates that between one-fourth and one-third of workers who become impaired on the job are accommodated following onset of disability. Those who are accommodated at work are more likely to stay employed than those who are not. Most who continue to work after the onset of disability remain with their current employers. (Burkhauser, Butler and Kim 1994; Daly and Bound 1994).

Despite the positive attitudes of many employers and the effectiveness of job accommodations, many companies are still not hiring people with disabilities. Lou Harris and Associates (1986, 1995) found that the percentage of companies that had hired people with disabilities within the last three years changed only slightly between 1986 and 1995--from 62 percent to 64 percent. The most commonly cited reason for not hiring people with disabilities, both in 1986 and 1995, was a lack of qualified applicants.

One incentive in the tax code intended to promote the employment of people with high levels of unemployment is the Targeted Jobs Tax Credit. Enacted in 1977 and renewed periodically since that time, the provision allows a credit to employers for hiring members of specific disadvantaged groups. People with disabilities are one of several targeted groups, representing a small portion of those hired under the credit (about 7 percent in 1987). No data are available about the impact of the credit on the employment rate of people with disabilities or on employers of people with disabilities.

Shortly after ADA was enacted, a disability access credit was enacted, amending the tax code to provide tax relief to small businesses that incur eligible costs in complying with the law. The credit was an addition to the Section 190 deduction, which has been available to businesses since 1976 for expenses incurred in removing barriers. No data are available about the use by employers or businesses of either of these tax code provisions (Schaffer 1991).

Key Legislation in the Past Decade

The Rehabilitation Act Amendments of 1986 (P.L. 99-506) amended the definition of "severe handicap" to include functional as well as categorical criteria and clarified that part-time work and supported employment are viable outcomes of rehabilitation services. States were required to plan for individuals making the transition from school to work.

The Americans with Disabilities Act of 1990 (P.L. 101-336) prohibits discrimination on the basis of disability in businesses with 15 or more employees. Qualified individuals with disabilities are protected by the law. Employers are required to provide reasonable accommodations so long as they do not impose an undue hardship on the business.

The Revenue Reconciliation Act of 1990 (P.L. 101-508) amends the tax code with an "access credit" intended to provide tax relief to small businesses that incur eligible costs when complying with ADA.

The Rehabilitation Act Amendments of 1992 (P.L. 102-569) require state vocational rehabilitation agencies to provide for the individual's choice of services and service providers; to focus on careers, not just entry-level jobs; and to presume that most individuals with disabilities are employable. Initiatives to ensure participation of minorities were authorized.

The Family and Medical Leave Act of 1993 (P.L. 103-3) allows workers to take up to 12 weeks of unpaid leave from work every year to care for newborn or adopted children, to care for family members with serious health conditions, or to recover from serious health conditions.

The Targeted Jobs Tax Credit (P.L. 74-271) allows employers to claim a credit equal to 40 percent of the first $6000 in wages of a person hired in a category of chronically unemployed workers. This credit has been intermittently renewed over the last decade, but has lapsed at the time this report is being written.

Recommendations

We know definitively that people with disabilities, including those with severe disabilities, can be effective workers and contribute to the economy. It is not the capacities of people with disabilities that limits their employment, but outdated attitudinal, organizational, societal and policy barriers.

General Employment Policy

1. The President, the Congress and federal agencies should ensure that all generic employment and labor policy and programs presume that people with disabilities are part of the American workforce.

As long as people with disabilities are viewed as outside of the labor force, they will never fully join the mainstream of American life. The appropriate role of all federal policy is to support people with disabilities in maximizing their employment.

Inclusion of People with Disabilities

2. The Congress and the President should ensure that all policy initiatives and programs having an impact on educational attainment and employment opportunities are designed and implemented to meet the needs and maximize the talents of all individuals, including those with disabilities.

Employment and training programs for people with disabilities should be integrated with employment and training programs for all other Americans. Accommodations and specialized services and supports should be provided as needed in the generic programs to people with disabilities. For example, direct communication access should be ensured for people who are deaf or hard of hearing. An overhaul of federal and state systems may be required to achieve a generic system that provides accommodations and access in order to successfully meet the needs of people with disabilities.

Employment Goals

3. The President should issue an executive order directing the Secretary of Labor to promote the employment of people with disabilities and to establish employment goals for people with disabilities to be reached by the year 2006.

Establishing national goals is an effective way to galvanize public attention, build broad support and provide a public mechanism for policy accountability. The nation has effectively used this process in campaigns to improve the health of the nation's citizenry and decrease infant mortality. The secretary of labor should work in conjunction with other relevant federal agencies and the disability community to establish employment goals.

Employment Statistics and Research

4. The President and the Congress should direct the Departments of Labor and Commerce, through the Bureau of Labor Statistics and the Bureau of the Census and in consultation with the chairman of PCEPD, to add people with disabilities as a group within the national labor force statistics reported monthly and to monitor reasons people with disabilities report for not working. This information should be available for types of disability, state and local areas, and diverse cultural and racial groups. These statistics should be used to monitor progress toward the employment goals for people with disabilities established in the previous recommendation.

Availability of these data will enable public monitoring of progress toward meeting the employment goals. It will provide the same level of visibility for the employment rate of people with disabilities as that provided for other protected groups, such as women and ethnic and racial minorities, when their employment rates are reported. It will promote a public assumption that people with disabilities are part of the workforce.

5. The Department of Labor, in conjunction with the National Institute for Disability and Rehabilitation Research in the Department of Education, should establish research priorities consistent with achieving the targeted employment goals for the year 2006.

Labor Market Trends

6. The Secretary of Labor and the chairman of PCEPD, in conjunction with representatives from business, labor, people with disabilities and labor market economists, should assess our nation's efforts to employ people with disabilities in the context of current and future labor market trends, both nationally and locally, and should provide recommendations for maximizing the employment of people with disabilities by the year 2006.

Health Insurance

7. Congress should enact legislation ensuring that adequate health care and long-term supports--including personal assistance services and assistive technology--will be available to people with disabilities who are employed, are seeking employment or are changing jobs.

The most often cited barrier to employment for people with disabilities is lack of access to adequate health care. For many people with disabilities, the only route to secure health care is through cash benefit programs. If they work, they risk losing those cash benefits and the health insurance that accompanies them. The unavailability of long-term services, such as personal assistance services and assistive technology, is also an obstacle to achieving and maintaining employment. Furthermore, people with disabilities--even those who are highly educated with strong work histories--may find it difficult to secure jobs with salaries that are high enough to enable them to pay for the support services they require.

Enforcement of Civil Rights Laws

8. The President, executive agencies and the Congress should vigorously support full enforcement of ADA, the Rehabilitation Act and other federal civil rights laws, supporting this enforcement with adequate funding, culturally appropriate outreach and accessible technical assistance services.

Incentives for Employers

9. The Secretary of Labor, in conjunction with the chairman of PCEPD, should establish a working group of employers and people with disabilities to identify and expand meaningful financial incentives for employers to meet the needs of their employees with disabilities for workplace access, accommodations, and family support and to promote the use of existing incentives.

Many employers are unaware of or do not utilize existing incentives to employ people with disabilities, such as the disability access credit. In addition, employers have expressed a need for financial incentives to cover costs for employees with disabilities that may be beyond the bounds of the "reasonable accommodation" requirement.

Youth

10. The Secretary of Labor, the Secretary of Education and the Commissioner of Social Security should work together to ensure that generic policies and programs that target youth include youth with disabilities, sending the clear message that the goals for their adult lives are employment and independence, not lifetimes of dependence or support on benefits.

The importance of work and individual responsibility should be woven into the educational programs of youth with disabilities, including effective transition planning for students in special education and real work experiences in middle school and high school. The assumption should be that all students with disabilities have the capacity to work and should be given every opportunity to prepare for a lifetime of work.

Media Campaigns

11. The President and the Congress should provide funding for and direct federal agencies with employment and/or ADA enforcement responsibilities to initiate and carry out national, state and local media campaigns designed to change public attitudes to support the vision of inclusion, empowerment and independence set out in ADA, thereby promoting employment opportunities of people with disabilities.

Such a media campaign should be a part of the media campaign called for in recommendation 9 of the Civil Rights section of this report.

Employment of People with Significant Disabilities

12. The President and the Congress should ensure that people with significant disabilities, including those with developmental disabilities, are provided with opportunities and programs to support them in working in inclusive settings at real jobs for real wages.

Despite some progress in employing people with developmental disabilities in real jobs for real wages, many remain in sheltered workshops with sub-minimum wages and few options. Strategies such as supported employment have promoted competitive employment for people often overlooked by mainstream employers. More initiatives to ensure real jobs for people with the most significant disabilities need to be developed.

Entrepreneurship

13. The Congress and the President should develop and fund initiatives to promote innovative employment and entrepreneurship among people with disabilities.

Dependency increases the costs of entitlements, lowers our gross national product, and reduces revenue to the Federal Government....People with disabilities want to work...to be productive, self-supporting and tax-paying participants in society.

Tony Coelho
Chairman, PCEPD
1990

Now, in the interlude between the baby boom and its echo, is the time for us to create constructive alternatives to people declaring themselves "unable to engage in substantial gainful activity." Now is the time for a new approach toward people with disabilities. Such an approach will help to alleviate the coming labor shortage, and it will do much to reduce the "disability crunch" that should arrive within a few years.

Edward Berkowitz and David Dean
May 9, 1989

The concept of income maintenance historically is one of providing income to individuals when they are unable to generate it themselves by working. Retirement because of age is the most common reason for the provision of income maintenance. Increasingly, people with disabilities have become recipients of income maintenance through both welfare and Social Security.

Social Security

At $63 billion annually, Social Security represents the Federal Government's largest expenditure on people with disabilities. When Medicaid and Medicare expenditures are added, the figure is over $120 billion.

Social Security manages two programs that provide income support (cash) to people with disabilities: Supplemental Security Income (SSI) and Social Security Disability Insurance (SSDI). Beneficiaries for both programs are those who are determined to be "too disabled to work." Children are deemed eligible for SSI when they are determined to be substantially limited in their ability to function appropriately for their age. SSI is an income maintenance program serving poor people with disabilities. SSDI is a social insurance program available to those who have worked and contributed to the Social Security trust fund. Acceptance on the SSI rolls automatically confers Medicaid coverage in most states. Acceptance on the SSDI rolls automatically confers Medicare coverage after a two-year waiting period.

Both programs have expanded considerably in the last decade. From 1984 to 1994, the number of beneficiaries of the two programs combined has grown from 4.5 million to 8.5 million. Expenditures have increased from $25.3 billion to $54.9 billion. Despite this considerable federal expenditure, most people on the rolls live at or below the poverty level. The average SSI federal payment as of September 1995 was $334 per month. The average SSDI payment was $662 per month.

Most people with disabilities who become Social Security beneficiaries remain on the rolls for their entire lives. The younger an individual is who comes on the rolls, the longer she or he is likely to stay on the rolls. For example, a 9-year-old SSI beneficiary, on average, will stay on the rolls about 27 years. The percentage of young beneficiaries, those under the age of 30, has increased by 43 percent between 1989 and 1993.

A number of provisions have been enacted to promote the return to work of beneficiaries. These are outlined below. In addition, the Social Security Administration (SSA) reimburses state vocational rehabilitation agencies for the rehabilitation of SSI and SSDI beneficiaries. SSA is currently implementing a program to reimburse private providers for rehabilitation services to beneficiaries. While these incentives have yielded increased employment by those who utilize them, they have not been effective in enabling people to actually terminate their benefits and return to employment. Less than one-half of 1 percent of beneficiaries, or about 6000 people annually, leave the rolls to return to work as a result of rehabilitation efforts. This percentage has been consistent over the life of the programs.

Designed as a safety net for people who are terminally ill or too severely disabled to work, Social Security programs for people with disabilities have had the unintended effect of trapping people with disabilities in lifetimes of poverty.

It is unlikely that any reforms within the Social Security system alone will be effective in yielding a significantly increased employment level for people with disabilities. Issues such as access to adequate health insurance and wages that are high enough to meet expenses need to be addressed.

The Social Security system is based on the notion that a person can be determined to be "too disabled to work." Evolution in knowledge, policy and practice in the last decade has challenged the concept of being "too disabled to work." We now know that individuals with severe disabilities can work if they have access to appropriate support services, accommodations and health care.

The Social Security system does not encourage people with disabilities to maximize their capabilities and competencies toward the achievement of independent living. While multiple work incentives have been enacted, their results are limited.

Other Income Maintenance Programs

The other key federal income maintenance program for people with disabilities is administered by the Department of Veterans Affairs. Veterans with disabilities receive about $18.6 billion in cash per year.

While there are substantial knowledge gaps regarding the number of recipients of Aid to Families with Dependent Children (AFDC) who have disabilities, there are studies that suggest that the prevalence of disability among heads and members of AFDC households is significant (Zill et al. 1991; Doyle et al. 1990; Adler 1993). One estimate found that over one in three AFDC households includes someone with a disability and almost 20 percent of women on AFDC have a disability (Adler 1993). The disability-related needs of these individuals are rarely identified or addressed by the programs that serve AFDC recipients.

Every state runs a workers' compensation program, whereby workers who become disabled as a result of an on-the-job injury receive compensation, usually in the form of cash. These programs have become quite costly over the last decade and reforms in many states are under way. In too many instances, support for a return to work is lacking.

The other major source of income maintenance is private long-term disability insurance, most often provided to employees through employers. Often employees who stop working because of an illness or disability begin drawing payments from their employers and eventually shift onto SSDI, either as a supplement or when private payments end.

Too frequently these systems provide incentives for people with disabilities to stop working when they are capable of continued work with additional supports or modifications. Because there is no well-established or well-funded system to provide supports to maximize employment and there is a well-established system for providing cash compensation, people with disabilities may have no choice except to leave the workforce and accept the cash.

Key Legislation in the Past Decade

Limiting Eligibility for Benefits

The Contract with America Advancement Act of 1996 (P.L. 104-121) prohibits the award of SSI, SSDI, Medicaid, and Medicare benefits to people who are disabled if drug addiction or alcoholism is a contributing factor material to the determination of disability.

Work Incentives

Since the early 1970s advocates and policy makers have worked to develop incentives for people on SSI and SSDI to work. Today a patchwork of over a dozen separate provisions operate with the goal of promoting employment. While many of these have been in place for longer than a decade, most have been amended and fine-tuned within the last decade in an ongoing effort to render them more effective.

Work Incentives for SSDI Beneficiaries

Trial Work Period. A beneficiary can work for nine months without losing benefits.

Extended Period of Eligibility. For 36 months following the trial work period, cash benefits are reinstated for any month in which earnings are below the substantial gainful activity level.

Substantial Gainful Activity. After the trial work period, a person can earn $500 ($880 for people who are blind) without losing any cash benefits.

Medicare Coverage. A beneficiary receives 39 months of hospital and medical insurance after the trial work period.

Medicare Buy-In. After the 39 months of premium-free Medicare, Medicare can be purchased at the same monthly cost paid by uninsured retired beneficiaries.

Work Incentives for SSI Beneficiaries

Section 1619(A) Benefit Offset. SSI beneficiaries working at or above the substantial gainful activity level receive an offset of $1 for every $2 earned.

Section 1619 (B) Continuation of Medicaid. Beneficiaries continue to receive Medicaid coverage when cash benefits are totally offset by earnings.

SSI Work Expenses for Blind Persons who Work. The portion of earnings spent by a blind person in order to work for transportation, taxes, special equipment, etc., is not counted in figuring SSI payments.

Plans for Achieving Self-Support. Beneficiaries can set aside income or resources for a period of time to meet expenses for reaching an occupational goal. The income or resources are not counted when determining the SSI payment amount.

Earned Income Exclusion. The first $65 of earnings in a month plus one half of the remainder is not counted when figuring SSI payments.

Student Earned Income Exclusion. A person under 22 who regularly attends school can exclude up to $400 in earnings per month (maximum of $1620 per year).

Work Incentives That Apply to Both SSI and SSDI

Impairment-Related Work Expenses. Beneficiaries can deduct the cost of certain impairment-related items or services needed to work (such as transportation or medical devices) from earnings.

Subsidy. The value of support a person receives on the job is deducted from earnings to determine if a person is engaged in substantial gainful activity.

Continued Payment Under a Vocational Rehabilitation Program. Beneficiaries who improve medically and are no longer considered disabled may continue to receive benefits if they are participating in any approved vocational rehabilitation program that will likely enable them to work permanently.

Recommendations

NCD concludes that the current set of policies and programs intended to provide economic security to individuals with disabilities is often a life preserver for people it serves. Cash benefits are the difference between sustenance and destitution for many recipients.

However, many features of the SSI and SSDI programs serve as obstacles to maximizing independence and self-sufficiency. Lack of access to health insurance and lack of flexibility supporting maximal employment often sentence people with significant disabilities to lifetimes of dependence. The current set of policies and programs too often functions more as a spiderweb than as a safety net, capturing people in poverty rather than supporting them to maximize their potential and their employment. The existing matrix of income maintenance and non-cash support programs is too complex, fragmented and punitive. These problems call for alternatives to reorient the program to assume and promote productivity, not dependence.

NCD envisions a system that serves as a trampoline, rather than a safety net, supporting people as they maximize their potential, catching them when they fall, and supporting their efforts toward independence again, always moving toward the goal of maximal employment. The system should function in a manner similar to our unemployment insurance system while addressing the unique needs of workers with disabilities who, due to the nature of their disability, may be unable to work continuously or at a consistent level of output. Key ingredients of this system include access to health insurance, tax credits to ensure that transitioning from benefits to employment does not produce financial disincentives, flexibility to accommodate disabilities that intermittently limit work capacity, and third parties with a vested interest in assisting people with disabilities in maximizing their employment.

Employment at the Core of Economic Security

1. The President and Congress should devise national policy that enables individuals with disabilities to develop economic security that is based on employment, not accessing benefits; and includes the supports, services and civil rights protections necessary to attain and maintain employment; and that decreases the dependency of people with disabilities.

For many people on benefits, Social Security represents their only opportunity for some degree of dignity while they are terminally ill. These individuals will never return to work. However, for the many who could work with appropriate support, both public and private income support programs must encourage work as the outcome of temporary benefits. Benefits must be constructed to provide on the path toward employment, not early retirement. The assumption that undergirds these programs should be one of productivity, not dependence. National policy should ensure that employment provides a genuine economic advantage over benefits. Currently, income maintenance policy may require a person with a disability to make a choice between a job and a personal attendant, between getting married and having health insurance, between having an income and enrolling in higher education. Economic security policy should always support maximal employment and independence and recognize investments in the future, such as higher education.

Economic Support

2. Congress should enact legislation, including amendments to the Social Security Act, that ensures a fundamental level of support for working-age adults with disabilities who are in economic need. This support should lead to employment as the desired outcome whenever possible. Key aspects of this legislation should include the following:

a) cash assistance at the poverty level that ends upon return to work but is immediately replaced by a Disabled Worker Tax Credit and a Personal Assistance Services Tax Credit, both of which are phased out as income rises;

This recommendation would be effective only if long-term services were available and if wages from employment are sufficient for self-support.

b) a de-linking of eligibility for cash benefits and other supports, including health insurance, personal assistance, housing subsidies and food stamps;

The de-linking of benefits will eliminate the current "cliff effect" that many people experience when they leave the Social Security rolls and simultaneously lose health insurance, long-term services (including personal assistance services), housing subsidies and food stamps. Such de-linking should not apply to the eligibility for Medicaid/Medicare that usually accompanies SSI/SSDI eligibility.

c) flexibility in the system so that people can be supported during intermittent periods when their disability may temporarily limit their ability to work;

d) health insurance coverage (including some long-term services) for individuals with disabilities who work or who return to work but who cannot obtain or afford health coverage;

e) supports and services, including housing, personal assistance services, assistive technology and vocational rehabilitation, that are necessary to ensure independent living and self-determination;

f) an accommodation fund that would pay for individual accommodations for Social Security beneficiaries that are beyond the reasonable accommodations required by ADA and that would enable these beneficiaries to leave the rolls and work.

g) service and support brokers to facilitate the attaining and maintaining of employment by individuals with disabilities who are capable of working;

A broker is a service coordinator whose job is to support the economic security and return-to-work efforts of people with disabilities. Brokers routinely provide information on employment options and supports to people with disabilities. These brokers could be private agencies run by people with disabilities;

h) maintenance of some cash support and full health insurance for those whose disabilities are so significant that they will not be able to support themselves by full-time employment.

This economic security package is intended to support independence and employment. Because many people leaving the Social Security rolls often take minimum-wage jobs, their income from working is not sufficient to cover basic living expenses, in particular disability-related expenses that are covered by public health insurance. The Disabled Worker Tax Credit (which could function in a manner similar to the Earned Income Tax Credit), the Personal Assistance Services Tax Credit, and the continuation of health insurance are intended to ensure that working is economically more advantageous than cash benefits. Access to long-term support services based on need, not eligibility for cash assistance, is also intended to support employment and independence. The accommodation fund is intended to fund technological accommodations, such as expensive computer systems and lifts or hand controls on vehicles, that will enable employment. The use of a broker to support people with disabilities in their efforts to maximize independence and employment may take many forms. One possibility is to issue "tickets" to beneficiaries who may deposit their tickets with the broker of their choice, who, in turn, will be paid by Social Security or another funding source to assist the individual in finding and keeping a job.

Employment Retention

3) The Commissioner of Social Security, the Secretary of Labor, the Secretary of Education and the chairman of PCEPD should work with state and local governments, employers, organized labor and the disability community to initiate policies and programs and, if necessary, legislation amending programs such as workers' compensation to ensure prompt comprehensive intervention for workers who become injured or disabled while they are employed, with the goal of returning workers as quickly as possible to the workforce.

Most people with disabilities become disabled during their working years. The point at which a person becomes disabled is the point at which he or she is most vulnerable to long-term separation from employment. Too often workers' compensation systems, long-term private disability insurance and Social Security promote that separation rather than a return to work. Early intervention at the onset of disability can serve to prevent entry onto the long-term insurance rolls, including Social Security, and retain people in the workforce in a productive capacity as long as possible.

Tax Incentives for Employers

4) Congress should develop tax incentives for employers who hire people with disabilities who have been receiving SSI or SSDI for more than two years.

We have learned that our system of health care is not really committed to the concept of family, and further, is not really committed to the concept of health care for all. This system, instead, offers health care to some people, in some places, for some diagnoses, in some age groups, some of the time.

Abioses and Molly Cole, parents of
Mariyama, a child with a disability
Testimony before the National Council on Disability
Hartford, Connecticut
June 17, 1991

I am prepared to die for my country, but not for my insurance company.

Justin Dart, disability advocate

People with disabilities have increasingly identified the lack of access to adequate health care and health insurance as a major obstacle to employment and independent living. Some progress has been made in challenging discriminatory practices under the Americans with Disabilities Act (ADA). People with disabilities participated actively in the health care reform debates of the early 1990s, securing provisions designed to meet their needs in both President Clinton's proposals and a number of bills introduced in Congress. The lack of significant progress in health care reform to date, the trend toward managed care and reforms proposed for Medicaid and Medicare, and the continued bias toward institutional, rather than community-based care, greatly concern people with disabilities and their families. (See NCD reports Disability Perspectives and Recommendations on Proposals to Reform the Medicaid and Medicare Programs, November 9, 1995 and Sharing the Risk and Ensuring Independence: A Disability Perspective on Access to Health Insurance and Health-Related Services, March 4, 1993.)

All people are at risk of developing a disability at some time in their lives, from accident, injury, illness, or from the aging process itself. However, people are generally regarded by insurance companies as high risk, in terms of health care costs, when they become disabled or older or have a family history of disability. Our current health care system has increasingly sought to segregate those who are high health care users or potentially high health care users from those who are "low risk." Rather than spreading the risk equitably throughout the population, the current system has minimized the risk for some and made access to insurance virtually impossible for others.

Our health care system, which is designed to address acute rather than chronic health conditions, rarely provides for the long-term services and supports that are often needed by people with disabilities. In addition, little emphasis is placed on prevention and wellness in order to avoid more costly treatments in the future.

Access to Private and Public Health Insurance

As the cost of health care and health insurance has escalated, people with disabilities have found it increasingly difficult to meet their needs through private insurance. About 4.6 million people with disabilities of working age, or 15 percent of all working age people with disabilities, lack any health insurance (McNeil 1993), and millions more are not insured for preexisting conditions. People with disabilities are more likely to receive health care through public sector programs than people without disabilities. About 9.2 million people with disabilities receive Medicaid and/or Medicare, largely as a result of being on Supplemental Security Income (SSI) or Social Security Disability Insurance (SSDI). While the majority of people with disabilities have some private health insurance, few have adequate coverage that they can depend on to meet their health-related needs, due to preexisting-condition exclusions, minimal benefit packages and benefit caps. Durable medical equipment, assistive technology and personal assistance services are common needs of people with disabilities that are rarely fully covered by health insurance plans.

Like people who are elderly, people with disabilities generally utilize more health care services than people without disabilities. For example, in 1993, 15 percent of Medicaid beneficiaries (those with disabilities) accounted for 39 percent of expenditures (NCD 1995). The significant expansion of Medicaid and Medicare has occurred to some extent because escalating restrictions from private insurers have increasingly pushed high-risk, high utilization people with disabilities into public sector programs. In addition, high health care costs and limited access to private health insurance encourage participation in the SSI and SSDI programs by people with disabilities in order to gain access to public health insurance.

While most people with disabilities have private health insurance, many receive it as a result of a family member's group policy through an employer. Working-age people with disabilities who are working full-time have the highest rate of private health insurance. Those who are working part-time are at considerable risk of being uninsured because they are likely to be ineligible both for an employer's group coverage and for public coverage, which is generally available only to those who are determined by Social Security to be "too disabled to work" (DeJong 1995).

Parents of children with disabilities are rarely secure in knowing that they will be able to provide for their children's health care needs. Private policies held by working parents may or may not cover children. When they do, annual caps and lifetime maximums may be met quickly. The complex array of public programs intended to assist parents is often overwhelming and baffling. High-risk pools established in some states may be very expensive and have long waiting lists. Parents may spend inordinate amounts of time trying to understand what is available and how to access it. They are often confronted with making guilt-inducing decisions requiring painful trade-offs between financial solvency, the needs of other family members and the health of the child with a disability. Some families have found themselves in the position of having to choose between relinquishing custody of their children to the state in order to become eligible for a program that would pay their child's medical bills and facing financial ruin from attempting to pay for the needed medical services themselves.

During the last decade, people with mental illness and their advocates have effectively articulated the need for parity in mental health coverage in health insurance policies. While little policy progress is evident, the issue of parity has been well established as a part of the health care reform debate.

Health Insurance and Employment

People with disabilities frequently list the lack of access to adequate and affordable health insurance as a major barrier to employment. Discouraged by knowing that they are unlikely to have access to adequate health insurance through employers, they may eventually drop out of the labor market altogether. Private insurance market practices, such as preexisting-condition exclusions, limits on benefits and caps on payments present problems for people with disabilities. Public health insurance is generally available only to those who are not working, though there have been some legislative changes to provide incentives for those who go back to work after being on benefits to keep their health insurance. The increasing trend toward part-time work is also problematic, as part-time employment rarely brings access to health insurance.

Those who need personal assistance services and other long-term supports generally must pay for those services out of their own pockets when they are working. Medicaid is virtually the only source of reimbursement for long-term services and supports, and it is generally unavailable to those who are working. Virtually no private health insurance reimburses for long-term services such as personal assistance.

Discrimination and ADA

NCD's original draft of ADA in 1988 included an omnibus provision prohibiting discrimination in the provision of health insurance. This provision was subsequently significantly restricted so that practices such as preexisting condition exclusions and underwriting would not be affected. People with disabilities continue to face discrimination in obtaining health insurance and health care services.

ADA has been used by some to effectively challenge discriminatory practices in the provision of health care and health insurance. In the early 1990s the state of Oregon submitted a Medicaid waiver application to the Federal Government intended to redistribute Medicaid benefits in the state. The application was initially rejected on the grounds that it violated ADA. People with disabilities have successfully used ADA to challenge caps on benefits specific to particular diseases, such as HIV/AIDS. Limitations on specific treatments for particular diagnoses have also been rejected as potential violations of ADA. For example, women with breast cancer have successfully challenged their exclusion from autologous bone marrow transplants by health insurance companies. Spouses and parents have prevailed in using ADA to secure health insurance through their employers for their husbands, wives and children with disabilities.

Managed Care

The past decade has ushered in an increasing trend toward the provision of health care in a managed care, rather than fee-for-service, delivery system. Although there are myriad types of managed care arrangements, managed care often provides access to health care services at a prepaid capitated rate of payment to providers. Managed care is increasingly being adopted in both the private and public sectors. Designed to stem the growing costs of health care, managed care has significant implications for people with disabilities.

Although some coordinated systems of care are effective in meeting the health care needs of people with disabilities and chronic illnesses, many managed care plans tend to underserve high users of care. Managed care is intended to save health care dollars by creating a network of providers who agree to provide all health services for a fixed per capita price known as a "capitation payment." Limiting access to specialty care through the use of primary care "gatekeeper" physicians is another managed care strategy intended to control costs. With a limited network of providers, consumers are restricted in their choice of doctor and other providers. Capitation arrangements provide incentives to underserve high users of care because these plans are designed to serve "average" patients who need health services infrequently. In addition, providers in the plan may benefit financially from restricting services to beneficiaries.

Thus, managed care generally creates incentives to underserve individuals who may require costly or frequent health care services. People with disabilities who need specialists may have a more difficult time accessing specialized services under managed care. Some have recommended that health plans and providers be "risk-adjusted," or compensated for the risk profile of their subscribers, in order to minimize risk competition. In the absence of an adequate risk-adjustment methodology, others have suggested that people with disabilities and other higher-risk groups be "carved out" into separate managed care systems in order to reduce the incentive to underserve. The challenge for disability and health policy is to develop risk-neutral financing and service delivery systems that do not undermine the full participation and equal access principles of ADA while simultaneously meeting the ongoing health care needs of people with disabilities.

For people with disabilities and chronic illnesses, incentives built into managed care often run counter to effective rehabilitation, prevention of secondary disabilities and complications, and independent living. It is important to note that the savings generated from managed care are usually not reinvested in the plan to expand benefits or improve quality.

Some people with disabilities who have been treated by the same specialist for decades are finding that they must leave that specialist and seek a new provider because the fee-for-service plan they once used is no longer available through their employer. Whether or not they will have access to a specialist in a managed care plan is uncertain, and even if they do, they will have to start all over again with a doctor who does not know their history and may have little experience with their particular disability or chronic illness.

In acknowledgment of the potential shortcomings of managed care for consumers with disabilities and chronic illnesses, a number of bills have been introduced in Congress to establish federal consumer and provider protections.

Medicaid Reform

With the rising costs of the Medicaid program, dramatic proposals in the recent past have taken the form of block grants to states and caps on the federal contribution to this program. With over five million people with disabilities on Medicaid, many of whom receive long-term services and supports, these proposals are particularly troubling to the disability community. Some proposals even allow states to define who has a disability for eligibility in the program, with no federal standard. Proposals to grant states maximum flexibility in designing their own programs would allow states complete authority over the amount, duration and scope of benefits provided. The funding formula under these proposals would severely restrict Medicaid service, leading inevitably to decreased benefits for fewer people. Finally, important legal remedies would be eliminated under some proposals, leading to limited recourse for consumers.

Medicare Reform

Proposals to dramatically scale back expenditures on the Medicare program have raised significant concerns about its future. Although Medicare covers approximately 35 million people over the age of 65, it also covers 4.2 million younger people with disabilities. Most people with disabilities have generally opposed efforts to dramatically reduce Medicare expenditures and are also concerned with proposals to shift large numbers of beneficiaries into private managed care plans. Of particular concern to people with disabilities is the outdated benefit package that Medicare offers its recipients, particularly in the areas of assistive technologies, home and community-based care, and proven complementary medicine. Many believe that the Medicare benefits package should be reviewed periodically to make it more consistent with contemporary health services and medical practice.

Cost Savings and Quality of Life

As the health care reform debate has proceeded in the last decade, some disturbing proposals and dialogue have emerged that greatly concern the disability community. Driven by escalating costs, the discussion has often been cast in the context of cost-effectiveness. Rationing proposals have raised questions about the value of the life of a person with a disability compared with the value of the life of a person without a disability. One commentator has characterized the public debate as posing the ethical question "Can we afford disabled people?" (Gallagher 1995). ADA answers this question by affirming that the lives of people with disabilities are as valuable as the lives of all other Americans.

The Oregon Medicaid waiver request raised such ethical questions. Central to the formulation of the original Oregon Medicaid waiver was a "quality of life" assessment that evaluated medical services in terms of their impact on the quality of life of those who received them. Depending on how such assessments are framed, they can relegate people with disabilities to lower quality-of-life status than those without disabilities. Such assessments can result in the denial of health-related services to people with disabilities on the grounds that these services will not necessarily improve their quality of life, that is, "cure" or significantly lessen their disability. The challenge for disability policy is to develop cost-effectiveness criteria that do not put people with disabilities at a disadvantage in resource allocation or health care decision making.

Key Legislation in the Past Decade

The Americans with Disabilities Act of 1990 (P.L. 101-336). This broad antidiscrimination legislation includes a prohibition against discrimination in the terms and conditions of employment, including health insurance. Thus, if a person with a disability is hired, he or she must have equal access to the health insurance provided by the employer to other employees. Refusing to hire a person with a disability because of concerns about health insurance costs is prohibited; however, medical underwriting is specifically permitted. ADA requires the provision of auxiliary aids and services in public accommodations, including offices of health services providers.

Medicaid amendments. Numerous amendments to the Medicaid program over the last decade have promoted increased community-based services for people with disabilities, such as personal assistance, case management, supported employment and psychiatric rehabilitation.

Social Security work incentives. People with disabilities leaving the SSI and SSDI rolls may continue to participate in Medicaid or Medicare indefinitely under certain conditions.

Recommendations

The lack of access to health insurance for people with disabilities is one of the most significant contributors to the low employment rate and the dependence of people with disabilities. In order to truly achieve independence and meet the goals of ADA, significant health policy reforms are necessary throughout the next decade.

Recent trends in publicly subsidized and privately funded health care programs in this country are of great concern to people with disabilities. The existing health care system disproportionately and negatively affects users of frequent or specialized health services. Health care continues to be strictly defined in medical terms without regard to the importance of enhancing function and independence. Some allege that the corporatization and consolidation of medicine diverts vital resources away from broader coverage and comprehensive benefits and toward investors' portfolios. The strong federal role in publicly subsidized health programs is increasingly being ceded to the states and the private market. Long-entrenched systemic biases continue to encourage congregate-care nursing home settings as the first option rather than the last resort. Rather than reforming the system to ensure the cross-subsidization necessary to provide appropriate health services to any individual in need, proposals are directed toward further segmentation of the market based on health risks.

Health Care as a Right

1. Congress should enact legislation that establishes health care as a right of all Americans without regard to a person's health, functional status or sociodemographic factors (e.g., age, race, employment, income).

Health care should be a right of all Americans and everyone should be able to access the health services they need when they need them. The success of such a system should be measured by a set of principles including accessibility, affordability, continuity, appropriateness, quality (based on outcomes), consumer control, comprehensiveness and equity.

Total Coverage by the Year 2006

2. In addition to limiting preexisting condition exclusions and improving portability and renewability of private insurance coverage, Congress should address the next series of health reforms designed to achieve a consumer-driven, risk-neutral health care system that covers everyone by 2006.

The calls for incrementalism heard during the defeat of comprehensive health system reform should now fuel a series of federal laws designed to achieve a health care system that spreads risk, is driven by consumers of health services and covers everyone. The next series of private insurance reforms should include community rating and limitations on premium increases, open enrollment mechanisms, a standard benefit package (to facilitate health plan comparisons), the elimination of lifetime aggregate insurance caps, meaningful choice of at least three health plans, portability in the individual private insurance market, the establishment of federal standards under plans that are subject to the Employment Retirement Income Security Act (ERISA), and a sliding scale based on income for premiums and copayments. Medical savings accounts should not be pursued, as they encourage segmentation of the health insurance market based on risk.

Consumer Driven System

3. Congress should ensure that all health care reforms and changes, in both the private and public sectors, make health care more consumer driven and include the following features:

a) adequate consumer information to empower consumers to make informed decisions when choosing a health plan or provider;

b) quality standards (e.g., health care report cards) that are developed in collaboration with people with disabilities and are responsive to the clinical and information needs of consumers with disabilities;

c) adequate appeals and grievance processes to enable consumers to challenge health plans and health provider decisions, including arbitration mechanisms, ombudsmen independent of health plans, and private rights of action;

d) consumer governance in which consumers and purchasers, not providers and payers, dominate the governing of the health care system through purchasing cooperatives and various oversight mechanisms.

Managed Care

4. Congress should maintain a strong federal role in setting standards and monitoring compliance of Medicare- and Medicaid-sponsored managed care health plans. In the market-based system of managed care, Congress should establish a framework that will ensure a more risk-neutral, consumer-driven managed care system that does not underserve people with frequent or specialized health needs and allows consumers to choose from a range of options.

A strong federal role in standard setting and monitoring of managed care will ensure that health plans compete on price and quality, not on price and risk. All Medicare and Medicaid beneficiaries should be given a choice of at least three viable health plans rather than being mandatorily assigned to a managed care plan. Each managed care plan that serves Medicare and Medicaid beneficiaries should be required to conduct an individual needs assessment at the time of enrollment. Such information must be acquired with the consent of the beneficiary and must remain confidential.

All managed care plans, including those that service only privately insured persons, should be required to meet federal standards to ensure access to specialty care, adequate grievance and appeals procedures including ombudspersons, and equitable utilization review criteria. Financing mechanisms should be studied (in a timely manner) to discourage underservice in all managed care plans, particularly capitated systems of care. These mechanisms may take the form of risk adjustments and other targeted approaches.

Antidiscrimination

5. The Department of Justice (DOJ) should develop regulations for ADA and the Rehabilitation Act of 1973 that clarify how disability discrimination laws apply to private health insurance companies and health plans as public accommodations (ADA Title III), instrumentalities of state and local governments (ADA Title II), federal contractors (Rehabilitation Act Section 503), and recipients of federal funds (Rehabilitation Act Section 504).

Many people believe that private health insurance companies and health plans should be considered places of public accommodation and therefore subject to Title III of ADA. Private health plans that perform the quasi-state function of servicing Medicaid beneficiaries should be required to meet the standards of Title II of ADA which applies to state and local governments. Private health plans that service Medicaid and Medicare patients should also be required to meet the nondiscrimination provisions of Sections 503 and 504 of the Rehabilitation Act of 1973, which apply to federal contractors and recipients of federal funds. NCD should establish an advisory committee to work with the DOJ to consider these issues and promulgate regulations clarifying the application of Titles II and III of ADA and Sections 503 and 504 of the Rehabilitation Act to private health insurance companies and health plans.

Medicare

6. Congress should reinvest in Medicare by periodically reviewing the benefit package to provide benefits (particularly assistive technologies) that accurately reflect contemporary health and medical practice and expand coverage to people with disabilities by removing work disincentives.

Although over four million people with disabilities below the age of 65 receive their health care through the Medicare program, the benefit package has been designed for the acute health care needs of senior citizens. In addition, the package of benefits provided by Medicare was established many years ago and has evolved slowly, while medical science, health interventions, and independent living have evolved dramatically during the same period. Despite attempts to address the work disincentives that are inherent in the program, many people with disabilities are not returning to the workforce for fear of losing indispensable health benefits through Medicare. Rather than cutting funding for Medicare over the next several years, Congress should reinvest in the program by updating the benefit package to more accurately reflect the health needs of people with disabilities, particularly in the areas of assistive technology and complementary medicine that has proven to be effective. Resources should also be reinvested in the Medicare program to eliminate work disincentives.

Medicaid

7. Congress should maintain the individual federal entitlement to Medicaid services and refrain from decreasing funding for this vital program for people with disabilities. If the states are to assume more control of the Medicaid program, a federal definition of "disability" and a federal private right of action should be maintained. Medicaid's institutional bias should be transformed into a presumption that long-term services and supports should be provided in the home and community.

Reforms that significantly transform the current Medicaid program with the goal of reducing Medicaid expenditures are most threatening to the large number of Americans with severe disabilities. Vastly increasing state control over the Medicaid program without adequate federal oversight and monitoring could be disastrous to many Medicaid recipients. Effective reforms of the Medicaid program can be accomplished without eliminating the underpinnings of the program. Congress should not eliminate the individual federal entitlement to Medicaid and should not seek to reduce funding for this program. The Federal Government should maintain a strong role in standard setting and monitoring to ensure state compliance with quality and effective health care service delivery. "Disability" should be defined at the federal level and a private right of action should be maintained in federal court to provide states with an incentive to meet the health needs and long-term services needs of people with disabilities. Long-term services and support should be provided in the home and community, with congregate-care settings as the last resort.

Redefining "Medical Necessity"

8. The term "medical necessity" should be clarified to include the concept of maintaining and improving the functional capacity of the individual, taking into account consumer choice, consumer lifestyle, and the long-term cost-effectiveness of the intervention or equipment under consideration. Specifically:

a) Long-term cost-effectiveness should be evaluated from a societal perspective, not from a health plan perspective, since health plans are prone to evaluate need and outcomes using a more limited time horizon (e.g., time remaining in current enrollment period) and a more narrow range of cost considerations.

To facilitate the assessment of long-term cost-effectiveness, the Federal Government should support efforts to develop standardized data collection protocols that can be applied across various impairment groups.

b) Interventions designed to maintain function should include interventions that will slow functional losses among people with progressive conditions.

c) In individual instances, medical necessity should be determined by persons who are knowledgeable about the needs of people with disabilities in consultation with the person with a disability or that person's.

d) In determining medical necessity, health plans should also consider the impact of their decision on the safety and well-being of unpaid caregivers such as family members who may be called upon to assist a family member with functional limitations.

e) People with disabilities should be afforded an appeal and grievance process that will enable them to challenge decisions based on medical necessity.

f) A strong federal role, as opposed to a strong state role, in defining medical necessity is needed because self-insured organizations are exempt from state regulation under ERISA. Federal leadership is needed in establishing the scientific evidence and establishing consensus with regard to controversial interventions and therapies where clear scientific evidence may be limited.

Demonstration Projects

9. Congress should authorize and fund demonstration projects to test a variety of model primary care, fitness and wellness strategies for people with disabilities, including those from minority and low-income groups, that can be replicated in a variety of settings.

Demonstration projects should engage the participation of medical rehabilitation providers, primary care providers, sports medicine providers, health clubs and fitness centers, providers of nontraditional complementary medicine, independent living centers, and other provider and consumer entities knowledgeable about the health care needs of people with disabilities.

Public Health

10. Congress should establish a focal point of leadership within the Federal Government to define, implement and coordinate a public health agenda for individuals with disabilities.

Such an agenda should promote access for people with disabilities to mainstream public health services such as health education, nutrition counseling, and smoking cessation programs and should develop and implement targeted public health efforts to address the specific health concerns of people with disabilities, including those from minority and low-income groups. Prevention of secondary disabilities should be a component of the agenda, as well as primary prevention that does not demean or devalue people with disabilities. The promotion of clean air and use of nontoxic substances (such as industrial cleaners) in public places is of particular concern to people with multiple chemical sensitivities and should be addressed within the public health agenda.

Research

11. Congress should fund a comprehensive research program on the efficacy of health services, health service delivery, and financing issues facing people with disabilities, including those related to the development of a more consumer-driven health care system.

The research program should evaluate various capitation and risk-sharing schemes and how they shape health plan and health provider behavior and the health outcomes of people with disabilities. It should develop quality indicators that are responsive to the clinical and information needs of consumers with disabilities seeking to make informed health plan and health provider choices. The efficacy of managed care approaches that are targeted to people with specific impairments or chronic health conditions should be studied. The development of risk adjusters that can be used to adjust health insurance premiums, provider payments, and quality of outcomes to more accurately reflect the clinical needs of enrollees with disabilities should be considered.

The incidence, prevalence, prevention and medical management of secondary health conditions among people with disabilities should be researched. New and existing interventions and strategies to meet the health care needs of people with disabilities should be studied in terms of their efficacy and cost-effectiveness. Practice guidelines that address the ongoing health care needs of people with disabilities should be developed. Prevention and health service delivery strategies targeted to minority and low-income people with disabilities should be developed. Model programs directed to meeting the primary and ongoing health care needs of people with disabilities should be evaluated and assessed for replicability. A health services research capacity that responds to the health care issues of people with disabilities should be developed.

Issues related to genetic screening should also be a part of the research agenda. The ethical implications and quandaries presented by new knowledge in genetic screening should be examined. The interface of genetic testing practices with antidiscrimination law and access to health insurance for people with disabilities should also be studied.

Education and Training

12. The Federal Government and the private sector should develop and implement education and training programs that will sensitize health care providers to the ongoing health care needs of people with disabilities, with the federal and state governments awarding grants to help develop such model educational programs.

Such training should provide a better understanding about the independent living needs and self-determination aspirations of people with disabilities in order to minimize misinformation, stereotyping and ignorance about disability. The training should be largely the responsibility of medical schools, health professional schools, professional and trade organizations, and health care providers. A knowledge and understanding of disability-related issues should be required for professional licensure and certification and for provider accreditation.

13. The Federal Government and state governments should provide training grants to consumer organizations, health care institutions and educational organizations designed to enable people with disabilities to become more informed consumers of health plans.

Such training should include ways to avert and manage secondary health conditions, ways to make the most effective use of health care services in a managed health care plan, ways to obtain and use price and quality information in choosing a health care plan when such information becomes available, and graduate level training that will enable people with disabilities to become health service researchers and assume leadership roles on health policy issues that affect their lives.

...true freedom of expression...is about power, to make clear our wants and opinions...to...control our health and well-being...to lead a lifestyle of our own choice and direction....The simple fact of the matter, however, is that millions of Americans with varying disabilities of all ages still lack this fundamental human power. Not because of their disabilities. But because they lack access to personal assistance, assistive technology and other ongoing supports....

Bob Williams
1994

I was sitting here crying, remembering when I was a little teeny baby here in Dorm K. Now I'm happy Brandon Training School is closing for good. I miss some of the people from here and I'm happy to see them. But I don't want to be back here. I don't ever want anyone to live here again--not even prisoners.

Cameron, a former resident of Brandon
Training School
(In Smith and Gettings 1994 p. 7)

I was in a nursing home for 13 years. I had to fight to get out. It was the beginning of my life at 22.

Claude Holcomb
ADAPT Activist

People with disabilities often need long-term supports and services in order to live independently. Long-term services include personal assistance services to assist people with activities of daily living, readers for individuals who are blind, interpreters for people who are deaf, habilitation, rehabilitation, assistive technology support and supported employment services. Historically, many people with disabilities, particularly those with mental retardation or mental illness, could access long-term services only if they lived in institutional settings. Many people lived, and continue to live, away from their families and communities in institutions and nursing homes because the community-based long-term services they needed were not available to them. NCD believes, and the Americans with Disabilities Act (ADA) affirms, that every individual with a disability should live in the community of his or her choice as a participating member of society.

There is no nationally organized community-based system of long-term services for people with disabilities. An individual who needs long-term services must pursue them through a complex, confusing and uncoordinated series of agencies and funding sources. Most frequently the services are provided as a part of medical services. Sometimes services are provided as a part of a supported living setting. In both cases, the services may be restrictive, failing to meet the full independent living needs of the consumer. Increasingly, consumers are advocating for community services that address a range of disabilities including mental illness, mental retardation and physical impairments.

Current Status of Long-term Services

Approximately 12.7 million people need long-term services. Of these, 2.4 million live in institutions such as nursing homes and intermediate care facilities for the mentally retarded. The majority of people who need long-term services are over age 65; however, 2 percent are children and 40 percent are working-age adults (American Association of Retired Persons [AARP] 1995). In 1991 America spent about $59.9 billion on nursing home care and $9.8 billion on home health care services. Medicaid paid $28.4 billion and Medicare paid $2.7 billion of the nursing home bill. Public funding for home health services, including Medicaid, Medicare and local governments, accounted for $7.1 billion of the home health care expenditure (AARP 1994).

People with disabilities have actively pursued the establishment of a national long-term services system, calling for the redirection of funds from nursing homes and institutions to community-based services. Disability organizations drafted personal assistance services legislation and actively participated in the health care reform debates of the early 1990s, crafting long-term services provisions that were included in both President Clinton's proposals and congressional proposals. Pressure to expand community-based services is likely to continue as people with disabilities increasingly move out of institutions into the community.

Current proposals to eliminate the federal entitlement to Medicaid threaten the major source of funding for community-based long-term services for approximately two million recipients with disabilities. Devolution of responsibility for Medicaid to states from the Federal Government is of great concern to people with disabilities who rely on Medicaid as the major source of funding for long-term services.

Personal Assistance Services

People who need personal assistance services have substantially lower personal incomes and are less likely to be employed than the general population. There is no private insurance coverage for long-term personal assistance services. Among personal assistance services users living in the community, 10 percent use paid services only; 11 percent use both paid and volunteer services; and 79 percent use volunteer or informal services only (World Institute on Disability and Rutgers University Bureau of Economic Research 1990).

A 1987 survey of attendant services in the United States concluded that such services are "fragmented, lack coordination, are usually medically oriented and burdened with work disincentives, are inequitably distributed across the United States and are most often delivered by personal assistants who are poorly paid" (Litvak, Heumann and Zukas 1987). Approximately two million people received some or all personal assistance services from public programs in 1988, with Medicaid and the Social Service block grants serving as the key federal sources of funding. Some personal assistance services programs are solely state funded (Litvak 1991a).

The Personal Care Option under Medicaid was used by 23 states in 1988 to provide personal assistance services. These programs have been criticized for being overly expensive, medically oriented, not allowing personal assistance services outside the home and allowing little consumer control or management of services (Litvak 1991a). However, Medicaid is the main funding source for long-term services for people with disabilities. NCD is concerned about proposals currently under consideration that might eliminate or curtail the federal Medicaid entitlement. Under current proposals, states may or may not choose to provide long-term community-based services to people with disabilities. Without Medicaid's support for long-term community-based services, people with disabilities would be at risk for institutionalization.

Deinstitutionalization

For the first time in history, more Americans with developmental disabilities (mental retardation and other significant impairments that require extended and multiple services) live in publicly supported community residences than in publicly supported congregate-care institutional settings. The institutional census peaked at 195,000 in 1967 and has diminished steadily since that time. Between 1988 and 1992, the population in institutions dropped from 91,000 to 78,000. Of the 347,000 individuals with developmental disabilities living in residential settings lived in 1992, 52 percent lived in settings with 15 or fewer residents. By contrast, in 1977 only 14 percent of people with developmental disabilities who lived in residential settings lived in settings with 15 or fewer residents (Braddock et al. 1995). The number of individuals with mental retardation residing in nursing homes has also declined, from 50,000 to 41,000, between 1988 and 1992 (Braddock et al. 1995).

Large institutions around the country began closing in the 1980s. A 1995 study determined that 94 institutions were scheduled to close or had closed in 29 states (Braddock et al. 1995). Since 1992 three states (New Hampshire, Vermont and Rhode Island) and the District of Columbia have completed closure of all institutions. The declining census, in conjunction with a leveling budget, has caused escalating per diems in institutions. Between 1988 and 1992 per diems rose from $154 to $212, ranging in various states from $124 to $435 (Braddock et al. 1995).

In 1989, for the first time in the nation's history, the amount of public funds supporting people with developmental disabilities in community settings exceeded the amount of funds allocated for institutions and other settings with 16 more beds. In 1992, 57 percent of funding was supporting individuals in community settings with 15 or fewer beds (Braddock et al. 1995).

Historically, the primary source of federal funding for services for people with developmental disabilities has been the Medicaid Intermediate Care Facilities for People with Mental Retardation (ICF/MR) program. Because the program has been so heavily biased toward institutional care, advocates urged Congress to enact a Home and Community-based Waiver (HCBW) provision in 1981. This provision allows states to redirect institutional funds to community programming. Participation in the program has increased steadily since 1981; 49 states currently participate. In 1995, for the first time, more individuals with developmental disabilities will be served under the HCBW (approximately 155,000) than under the ICF/MR program (Smith and Gettings 1994).

In 1990, Medicaid amendments were adopted that authorized Community supported living arrangements, promoting individualized support services for people with developmental disabilities as they designed their own living situations. Eight pilot states participated in this program, serving about 3500 individuals; state and federal expenditures were projected to be $60 million by the end of the program (Prouty and Lakin 1995). Almost 75 percent of participants were supported living in their own homes. As the program terminated in the fall of 1995, it left an important legacy in most states, having planted "seeds" of supported living through out the country. These seeds will likely promote supported living approaches throughout the state service system (Braddock et al. 1995).

Since the 1960s, people with mental illness have increasingly left institutional settings. However, the funding has rarely followed them to support community services. Many people who once resided in institutions have become homeless. The results of the deinstitutionalization movement are controversial, with some organizations calling for easier access to hospital-based treatment.

Despite the substantial progress, challenges remain. Thousands of individuals continue to live in large institutions and nursing homes when they could live in smaller community settings. Too many people with mental illness remain unserved or underserved in the community. States vary dramatically in their use of institutional services and in the amount of money they spend on alternative services.

Key Legislation in the Past Decade

The Medicaid Home and Community-based Waiver Program, Section 1915 (c) of the Social Security Act of 1981 (amended in 1986, 1987, 1988 and 1990), enables states to target a population of long-term care recipients to receive home and community-based alternatives to institutional care.

The Older Americans Act Amendments of 1987 (P.L. 100-175) authorize funds for state and community programs including nonmedical in-home services for the frail elderly such as homemaker and home health aides, chore services, in-home respite care, adult day care and minor modifications of homes (not to exceed $150 per person).

The 1990 Medicaid Amendment authorizing Community Supported Living Arrangements (P.L. 101-508) stresses individualized support rather than the standardized services common to the ICF/MR program.

Recommendations

While there has been considerable progress in deinstitutionalization, much remains to be done to build an effective long-term services system in the community. Ongoing biases toward providing services in institutional settings inhibit the continued development of such a system. People with disabilities continue to face a complex maze of fragmented services that are inconsistent from one locality to another and are too often directed by agencies rather than by people with disabilities who are using the services. NCD's recommendations provide the framework for a new system, a mechanism for its financing and a transition strategy for achieving it.

National Long-Term Services and Supports Policy

1. Congress should enact legislation that establishes a national long-term services and supports policy and unifies existing fragmented funding and services to establish a Long-Term Services System. The new system should be consumer driven, provide a range of home and community-based services, offer personal assistance services as the core service, and provide both ongoing and episodic basis services. The legislation should include the following elements:

a) a reversal of the institutional bias in Titles XVIII and XIX of the Social Security Act (Medicaid) so that home and community are the expected service settings and institutions are the last resort;

b) personal assistance services grounded in the values of consumer choice, consumer direction, and community participation, accommodating needs that change over time;

c) mechanisms to ensure access to long-term services by those who, because of their disabilities, are unable to make their own decisions;

d) consumer direction in selecting, managing, training and dismissing personal assistance services workers regardless of the employer of record;

e) amendments to the tax code that promote maximum consumer direction in personal assistance services;

f) a range of management and payment models including direct pay, vouchers and consumer-directed agency provision;

g) elimination of legal and regulatory barriers to the maintenance of dignity and independence of people with significant disabilities, including inappropriate medicalization of routine procedures;

h) funding of demonstration projects that test innovative approaches that honor the intent and spirit of ADA;

i) elimination of legal and regulatory barriers to the provision of functional supports that promote independence and inclusion;

j) establishment of a functional needs assessment instrument that assesses the person's functional capabilities in relation to the support in his or her living environment in order to determine the level of need for personal assistance services;

Individual need must take into account the individual's's environment. For example, a person with quadriplegia who lives in an accessible house, has appropriate assistive technology, including a lift-equipped van which the individual drives, and has a support system of family and friends is likely to have fewer personal assistance needs than a person with less significant disabilities who lives in an inaccessible house, has no assistive technology, does not drive and has no informal or family support system in place.

k) a study of how long-term community services might be demedicalized, directed by the Secretary of Health and Human Services (HHS) with the participation of people with disabilities and national medical and allied health organizations such as the American Medical Association and the American Nursing Association;

l) a requirement for consumer-directed oversight of a services system plan submitted to HHS by states that involves consumer participation in the development of the plan; a record of consumer comments, consumer participation in the design and evaluation of services; the rights of consumers to sign off on, refuse or approve a plan of services and ongoing assessment of the performance and efficiency of administering agencies;

m) ongoing training of consumers and providers that promotes meaningful consumer direction and evaluation.

Financing

2. Congress should amend the current Medicaid law and other relevant laws to establish a priority for home and community services and to establish that, for all Medicaid and other public funds, institutions are the placement of last resort. Provisions in the legislation should include

a) a combination of funds for institutional and community services;

b) an attachment of funding to individuals rather than providers so that the funds follow the person, not the service or the setting;

c) empowerment of people with disabilities and their families to decide how funds are allocated across available services;

d) assurances that providers of personal assistance services will receive wages and benefits commensurate with jobs of comparable skill and effort in the community;

e) the establishment of a task force to continue to study the financing of long-term services, which must include a majority of people with disabilities who use long-term services.

The Federal Role and the State Role

3. Congress should ensure that the federal role and the state role are clearly delineated in the provision of long-term services and supports. The federal role should include

a) integrating fragmented programs and funding streams into one organizational structure;

b) defining eligibility and basic scope of services with guidelines for implementation within one year;

c) appointing a consumer/user group to codevelop definitions of eligibility and scope of services.

The state role should include

a) mirroring the federal structure of integrating funding streams and programs;

b) developing a state plan of action with significant participation by users of long-term services;

c) reporting regularly on compliance with eligibility guidelines and scope of services;

d) ensuring that users have the right to decide on services and who provides them;

e) developing guidelines for consumer and worker protection;

f) developing administrative procedures.

Transition to New Long-Term Services and Supports Policy System

4. Congress should mandate a transition team in each state to ensure a smooth transition from an institutional/medical model to a home- and community-based consumer-directed model. These teams should

a) play an active role in developing policy for new systems, reporting to state and federal policy makers and monitoring any pilot programs;

b) coordinate and integrate efforts with existing Developmental Disabilities Planning Councils and Statewide Independent Living Councils;

c) consist of members appointed by the governor for five years, with a composition of 51 percent users of long-term services or representatives of such individuals, reflecting the minority and urban/rural demographics of the population, including Native Americans; representatives from the lead state Medicaid agency; representatives from the state department of labor; representatives from the nonprofit community; representatives from Statewide Independent Living Councils; representatives from organizations representing older Americans such as the American Association of Retired Persons; members of both legislative bodies from both political parties; and one team member who attends a national body that monitors activities and innovation in all states;

d) maintain a central registry on current pilot programs, including complaints and positive feedback;

e) develop policy guidelines to be used by state agencies, providers, health maintenance organizations and managed care organizations;

f) develop a time line for deinstitutionalization in the first year and monitor its implementation;

g) work with the state department of labor and JOBS programs to develop personal assistance services worker capacity;

h) develop draft regulations for both a direct pay/voucher model and a consumer-directed agency model;

i) determine whether individuals will use vouchers or agencies and ensure that resource allocations are based on these determinations;

k) holding statewide hearings to gather input from the broad cross-disability community.

Demedicalization of Services

5. Congress should direct the Secretary of HHS to develop a national policy which recognizes that disability does not necessarily connote illness or incompetence or the need for medically controlled services.

In the case of people with psychiatric disabilities, generic community services (e.g., housing, vocational training) should not be linked to compliance with "treatment plans." Personal freedom should be the benchmark of all community programs.

This policy must distinguish between acute and chronic conditions and recognize that acute needs for some are chronic conditions for others that should be approached as activities of daily living. Nonmedical assistants can and should perform many procedures that are currently considered to be medical and thus are allowed to be performed only by medical professionals. Laws in many states, such as nursing practice laws, prohibit the performance of many procedures by laypersons, thus unnecessarily increasing the costs of personal assistance services. Such laws will need to be amended.

Research and Data Collection

6. Congress should direct the National Institute on Disability and Rehabilitation Research and other relevant research and data collection agencies to establish a research agenda and data collection efforts with the following features:

a) a focus on priorities and perspectives of people with disabilities, including those who are consumers of the services being studied;

b) use designs and methodologies that include people with disabilities in all aspects of the research and data collection processes, such as participatory action research;

c) a focus on data related to the interaction between the individual with a disability and the individual's particular environment, including data on the person's physical, mental and emotional levels of functioning,;

d) a focus on data related to consumer satisfaction;

e) a focus on understanding the effects of racial, ethnic and gender characteristics in relation to various service models;

f) a focus on family structures, living arrangements and isolation as these factors relate to functional needs;

g) a study of the impact of gender inequities in long-term services in the public and private sectors;

h) use of longitudinal studies;

i) an emphasis on cross-disability issues, functional issues and environmental issues as they relate to the need for personal assistance services.

The disability access provisions in the Telecommunications Act of 1996 mark a high point in legislative advocacy for the disabled community....Universal design enhances the marketability of a new product or service.

Deborah Kaplan
1995

If we rely solely on market forces to drive the communications revolution, then people with disabilities will be disenfranchised in the communications revolution. Americans with disabilities then would be denied the basic tools necessary in the Information Age to get an education, to get a job, to share in our cultural experience, to be part of politics, to communicate.

Reed E. Hundt, Chairman
Federal Communications Commission
June 28, 1995

All Americans regularly and increasingly rely on technology to enhance functioning and to perform routine tasks. From eyeglasses to telephones to remote controls for televisions, the daily lives of Americans are significantly shaped by technological innovation. Over time, as the novel becomes the ordinary, the provision and cost of such technology becomes standard fare in American business and culture. Historically, technological progress has yielded both benefits and barriers for people with disabilities. Developed in an effort to enhance communication for people who are deaf, the telephone ironically served to isolate people who are deaf for many decades. To the extent that technological innovation proceeds in an accessible fashion, it holds great promise for people with disabilities.

Recent rapid and potent advances in technology have developed the potential for a level of independence and productivity for individuals with disabilities that was once only dreamed of. Augmentative communication devices, almost unheard of only a decade ago, enable people without speech to program and activate computers to speak for them. Voice-activated computers enable people with limited motor capacity to write books. Assistive listening devices enable individuals who are hard of hearing to hear within the average range. With the enactment of the Americans with Disabilities Act (ADA), telecommunications relay services provide 24-hour access to the telephone for people who are deaf or hearing impaired. Television decoders and descriptive video services bring television to people with hearing and visual impairments. Assistive listening devices and descriptive video services have increased the accessibility of movies and the performing arts for patrons with disabilities.

The development of the National Information Infrastructure (NII), or "information superhighway," holds great promise for people with disabilities. All of these technological developments have the potential to significantly increase the employment rate of people with disabilities and to enhance educational opportunities.

Advances in telecommunications in the last decade have already had considerable impact on people with disabilities. A decade ago the term "E-mail" was virtually unheard of. For people with disabilities who can afford and use the technology, E-mail offers enhanced communication and increased access to information. A decade ago working at home was an oddity. The expansion of telecommunications options, including fax machines and E-mail, makes telecommuting more and more of a trend. For a person with a mobility impairment or a person with a disability in a rural area, technology can enable increased participation in the mainstream of American life.

Access to Assistive Technology

In 1990, the National Institute on Disability and Rehabilitation Research and the National Center for Health Statistics cosponsored a survey on assistive technology devices and homes with accessible features as part of the National Health Interview Survey of 1990. The survey found that more than 13.1 million Americans, about 5.3 percent of the population, were using assistive technology devices. Mobility devices were the most frequently used type of assistive technology, used by 6.4 million people. Hearing aids were used by 3.8 million people, walkers by 1.7 million people, wheelchairs by 1.4 million people and back braces by 1.2 million people (LaPlante 1995a).

While the right assistive technology can make a monumental difference in the life of a person with a disability, many people who need the technology remain frustrated by persistent barriers in gaining access to the products and devices yielded by scientific research and development in a timely and usable manner. Advances in science and research simply are rarely readily available to people with disabilities. Barriers include limited dissemination of information about what technology is available and how to locate it and lack of third-party reimbursement or funding to purchase or utilize the technology (NCD March 4, 1994).

In addition, many assistive technology services are not consumer responsive. While the 1988 Technology Related Assistance for Individuals with Disabilities Act defines and requires consumer-responsive systems, barriers to implementation abound (Galvin 1995). People with disabilities have not yet been fully empowered to determine their service needs.

ADA should increase the availability of assistive technology for people with disabilities. The reasonable accommodation requirement may involve the purchase of equipment or devices by employers. Places of public accommodation are providing auxiliary aids and services which may involve assistive technology. For example, hotels are purchasing telecommunication devices for the deaf and television decoders for hearing-impaired guests. Libraries and schools are purchasing reading machines and other devices to allow blind people access to printed material.

The National Information Infrastructure

The development of NII has the potential to level the playing field in many areas of life for people with disabilities. It also has the potential to create new barriers to full participation if it is not developed to be accessible to and usable by people with disabilities. Potential advantages include increased access to information, increased communication with others, decreased personal isolation and increased opportunities to participate in distance learning, do shopping and receive medical services (NCD 1996).

Potential barriers to NII include socioeconomic barriers and the high levels of skill required to utilize complex information technologies. While these barriers are present for many Americans, they may disproportionately affect people with disabilities who are poorer than the general public and less educated. Graphic user interfaces and touchscreen kiosks and products present barriers to people who are visually impaired or blind (NCD 1996).

Universal Design

People in the disability community have been articulating and promoting the notion of "universal design" for over a decade. This notion refers to designing buildings, transportation, technology, etc., so that it is usable by people with a range of abilities and disabilities. Such design offers accessibility to individuals with disabilities, but also to others. For example, a voice-activated computer may be used by individuals who want to avoid the risk of carpal tunnel syndrome or who simply prefer voice input.

When applied to NII, the notion implies access to newly emerging and developing technologies for people with disabilities. Because development in this area is so rapid, it has been difficult for third-party vendors to create access technologies to keep up with new information technologies (NCD 1996). However, some recent progress is evident. For the last year, NCD has worked with the Microsoft Corporation on ensuring accessibility of Microsoft's new products and technologies. The company has committed itself to addressing the needs of people with disabilities during all phases of product planning, development and support. The disability community has worked with Congress and representatives from the telecommunications industry over the last four years to ensure that telecommunications deregulation legislation will include disability access safeguards.

The challenge for the future will be to continue to promote universal design by seeking wide acceptance in the industry.

Key Legislation in the Past Decade

The Technology Related Assistance for Individuals with Disabilities Act of 1988 (P.L. 100-407) amended in 1994 (P.L. 103-218) (the Tech Act) supports state efforts to implement consumer-responsive, comprehensive, statewide programs of technology-related assistance, including technology centers, for individuals with disabilities of all ages.

The Americans with Disabilities Act of 1990 (P.L. 101-336) requires the establishment of telecommunications relay systems within every state and across states so that people who are deaf and hard of hearing have equal access to the telephone.

The Television Decoder Circuitry Act of 1990 (P.L. 101-431) requires new television sets with screens 13 inches or larger to have built-in decoder circuitry in order to display closed-captioned television transmissions for people who are deaf or hard of hearing. The legislation became effective July 1, 1993. This legislation will have the effect of phasing in increased accessibility to television over time.

The Telecommunications Act of 1996 (P.L. 104-104) requires telecommunications manufacturers and service providers to ensure that equipment is designed, developed and fabricated to be accessible to and usable by individuals with disabilities, if this is readily achievable. Closed captioning is required when it is readily achievable.

Recommendations

Universal Design

1. The President, the Congress and the private sector should develop initiatives to promote universal design through a combination of incentives, legislation, enforcement and research, including

a) developing a research agenda on universal design that includes market research, design research, research to develop guidelines and standards and descriptive research (e.g., the history of the use of technology, the type of technology used, the level of durability);

b) establishing a Universal Design Award, modeled on the Baldrige Award for Innovation in Business, that would recognize outstanding innovation in the development, design or production of technology that is particularly effective in meeting the needs of people with disabilities;

c) enacting a universal design statute or a new title to the Rehabilitation Act that would 1) promote the creation of more universally designed/accessible products, systems, practices and environments leading to enhanced employment of people with disabilities; 2) support research funding for interested industries, 3) establish an information clearinghouse; 4) gather data on the need for and use of accessibly designed products, systems, practices and environments and assistive technology; and 5) provide technical assistance to industry by developing a universal design support network modeled after the Job Accommodation Network;

d) establishing functional standards for accessible/universal design beyond telecommunications, including 1) incorporating captioning and audio description standards into audiovisual technologies; 2) encouraging development of telecommunication equipment standards that include the ability to present information in (at the user's option) audio, text or video and that are compatible with assistive technology add-ons; and 3) addressing copyright concerns without limiting the ability to add captions or descriptions;

e) charging or creating an interagency committee with addressing how different agencies can promote universal design, including consideration of 1) strengthening government purchasing policies, including Section 508 of the Rehabilitation Act, to give preference in purchasing to universally designed products and 2) requiring a disability impact statement in all proposals responding to requests for proposals for federal research and demonstration funds and establishing increased accessibility for people with disabilities as a criterion for funding;

f) creating tax incentives for Universal Design including a tax credit for companies engaged in basic research and development in universal design.

Assistive Technology Research and Development

2. Congress and the President should promote continued research and development of assistive technology and assistive technology services by

a) mandating and conducting a feasibility study regarding the creation of universally designed technologies that would be usable by individuals with multiple disabilities and effective in a broad range of environments;

b) supporting research to develop assistive technology to address new and emerging audiovisual information, devices, and systems, such as research on converting information into digital presentation-independent (sensory modality- independent) form;

c) supporting research to develop assistive technology to address new and emerging gestural/manipulative devices and systems;

d) supporting research to improve existing types of assistive technology, including the incorporation of new technologies and knowledge;

e) supporting consumer involvement in product design and testing activities;

f) broadening the funding support for these activities beyond the Department of Education to other federal agencies.

Incentives to Business and Industry

3. Congress and the President should develop a range of initiatives that offer incentives to business and industry to develop and utilize assistive technology and accessible technology, including

a) tax credits and deductions for entities that undertake housing and building construction and modification that incorporates accessible design, innovative facilities that transcend minimal accessible design requirements, and acquisition and maintenance of assistive technology for people with disabilities;

b) expanded tax credits and deductions now allowable under the access credit for compliance with ADA;

c) incentives for insurance carriers that cover the acquisition and maintenance of assistive technology for people with disabilities;

d) incentives to industry and business for donations of assistive technology to people with disabilities;

e) incentives to developers and manufacturers of universally designed products that meet established universal design functional standards.

Affordability

4. Congress and the President should develop a range of initiatives to enhance the affordability of assistive technology and accessible technology for people with disabilities, including

a) personal tax credits or deductions for individual expenses incurred in purchasing or maintaining assistive technology;

b) expanded coverage for durable medical equipment and all assistive technology through Medicaid, Medicare, private health insurance and eventually through universal health care;

c) widely disseminated studies of results of projects funded by the Tech Act that resulted in increased funding for or better delivery of assistive technology to people with disabilities who are poor or institutionalized;

d) an expanded universal service fund under the Telecommunications Act to include telecommunications-related assistive technology for people with disabilities;

e) a revolving low-interest long-term assistive technology loan fund designed to facilitate access to assistive technology for consumers for whom such technology would otherwise be unaffordable.

Strengthening and Enforcing Existing Laws

5. Congress should strengthen existing laws and the administration should undertake stronger enforcement of existing laws, regulations and policies that address assistive technologies and universal/accessible design, including

a) extending Section 508 of the Rehabilitation Act beyond the Federal Government to ensure availability of accessible technology for people with disabilities who are employed in the private sector;

b) increasing funding for enforcement;

c) amending relevant laws to strengthen the standard of access ("readily achievable") so that total access will be achieved.

Information Dissemination

6. Congress and the Federal Government should promote a range of activities intended to further disseminate information about accessible/assistive technology.

Public libraries should be urged to offer a range of information related to accessible/assistive technology, including information about services and funding resources for people with disabilities. This information should be in accessible formats as required by Section 504 of the Rehabilitation Act and Titles II and III of ADA. It should involve the establishment of universal key words relating to assistive technology as a discrete item in various library, professional and other research indices as well as World Wide Web indices.