The Braille Monitor                                                                                       March 2003

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The NFB's 2003 Legislative Fact Sheets

Legislative Agenda of Blind Americans:

Priorities for the 108th Congress, First Session

Standing in front of the Department of Education building and its little red school house, Federationists Donna Hartzell, Arkansas; Denna Lambert, Arkansas; Melody Lindsey, Michigan; Steve Handschu, Illinois; and and unidentified Federationist engage in animated discussion, no doubt wondering why the promise, "No child left behind," apparently does not include blind children.
Standing in front of the Department of Education building and its little red school house, Federationists Donna Hartzell, Arkansas; Denna Lambert, Arkansas; Melody Lindsey, Michigan; Steve Handschu, Illinois; and an unidentified Federationist engage in animated discussion, no doubt wondering why the promise, "No child left behind," apparently does not include blind children.

Most people know someone who is blind, and seventy-five thousand Americans become blind or visually impaired every year. The blind population in the United States is estimated to exceed 1.1 million with several million more considered to be visually impaired. In addition, the social and economic consequences of blindness directly touch the lives of each blind person's family members, co-workers, and friends. Public policies and laws affecting blind people have a profound impact throughout our entire society.

Decisions that result from misconceptions or lack of information about blindness can be more limiting than the loss of eyesight itself. This is why we have formed the National Federation of the Blind. The Federation's leaders and the vast majority of its members are blind, but anyone is welcome to join in our effort to win understanding and equality in society.

Our priorities for the first session of the 108th Congress reflect an urgent need for action in three areas of vital importance to the blind. (For an explanation of these issues, please see the attached fact sheets.)

1. Congress should pass the Instructional Materials Accessibility Act ensuring that no blind child is left behind in school. This bill would provide Braille textbooks simultaneously with print editions, giving blind students an equal chance to learn.

2. Congress should amend Title XVIII of the Social Security Act to authorize Medicare coverage of independence training for older blind persons and to include coverage for the cost of devices providing blind persons with access to product labels and instructions as a part of any federally established prescription drug benefit. This proposal would ensure that older blind Medicare beneficiaries have access to the critical training services and prescription drug information they need to remain independent and living at home, rather than being forced into costly long-term care facilities.

3. Congress should eliminate the Social Security earnings penalty placed on blind people who work. This proposal includes mandated adjustments in the blind persons earnings limit to reach $30,000 over the next five years, reducing the disincentive to work. People who are blind are asking for your help to address these priorities in the present session of Congress. By acting in partnership with the National Federation of the Blind, each member of Congress can help build better lives for the blind, both today and in the years ahead. The legislative actions recommended in our priorities will help blind persons and create a brighter future for all Americans, as well.

Fact Sheet 1

Access to Printed Instructional Materials
Leaving No Blind Child Behind

Legislation

Short title: Instructional Materials Accessibility Act. Introduced by Representative Thomas Petri of Wisconsin and Senator Christopher Dodd of Connecticut.

Purpose

To improve timely access to instructional materials for blind and print-disabled students.

Background

In the mid-nineteenth century states established centralized schools for the blind to educate blind and visually impaired students. To support this, Congress authorized the American Printing House for the Blind (APH) in Louisville, Kentucky, to produce educational materials in alternate formats, including Braille. APH has continued to fulfill this function since 1879 and receives annual appropriations for this purpose.

In the 1960's significant numbers of blind children first began to attend schools in their home communities, and today the vast majority do so. As a result, Braille, audio, and large print books must be obtained or created by every local school district that has one or more blind children. Converting printed instructional materials into specialized formats such as Braille is often time-consuming, labor-intensive, and costly, taking six or more months and several thousand dollars to complete a single book. Relying on APH alone cannot fulfill the need. Therefore it is the exception--not the rule--for blind students to receive their textbooks when they need them.

Existing Law

The Americans with Disabilities Act, the Individuals with Disabilities Education Act, and other federal laws clearly establish the policy that individuals with disabilities are entitled to equal treatment in all areas of society. However, the successful implementation of these laws does not occur without clear, specific, and practical standards and systems in place to anticipate accessibility needs. Currently no federal laws facilitate the production of textbooks in Braille.

Approximately twenty-six states have responded to this need by requiring publishers to provide electronic copies of print editions of textbooks. However, no consistent file format is used among the states, and the electronic copies provided by publishers are frequently not usable for Braille reproduction at all. The resulting patchwork of inconsistent and often conflicting state requirements places burdensome obligations on publishers without efficiently facilitating more timely production of books in accessible formats. An agreed-upon, uniform electronic file format would reduce the burden to publishers and significantly reduce the cost of creation, while helping to provide materials to blind students at the same time they are provided to others.

Proposed Legislation

Congress should enact the Instructional Materials Accessibility Act, which has been negotiated by textbook publishers, the National Federation of the Blind, and other affected groups. This legislation will ensure that blind and visually impaired students will not be left behind in having the textbooks they need in a form they can use.

Prepared for introduction in Congress, the draft legislation would:

* Require state plans to ensure that students who are blind or visually impaired have access to instructional materials in formats they can use at the same time the materials are provided to students who can see;

* Endorse a single, uniform electronic file format for instructional materials prepared by publishers;

* Require publishers to produce a copy of each textbook in the uniform electronic file format and furnish it to a National Instructional Materials Access Center for distribution to schools; and

* Fund capacity-building initiatives to assist state and local educators in using electronic files supplied by publishers.

Benefits and Costs

The principal benefit of this legislation will be a low-cost and convenient means to convert printed textbooks into Braille or other alternate formats. This will allow rapid creation of textbooks in the desired format for each student, sighted or blind. For students who read Braille, their books can be presented through the use of synthetic speech or stored and read with small computers which display Braille dots.

Without this legislation local school districts will continue to bear the burden and cost of converting printed books into Braille. However, modern technology can now support shifting much of this responsibility to publishers without placing an undue burden on them. This legislation does not remove the school's responsibility to provide materials but will institute a shared burden between the schools that teach the children and the publishers that create the books. This will be the effect of having a uniform electronic file format and national distribution center.

This shared obligation between school and publisher has been carefully crafted, with publishers fully engaged in the effort to create it. The cost anticipated to operate the National Distribution Center will be $1 million annually, with $5 million needed to fund training and technical assistance programs for local schools. Federal legislation is required to authorize funds and to establish a coordinated distribution system.

Please support blind Americans by cosponsoring the Instructional Materials Accessibility Act.

Fact Sheet 2

Aging with Loss of Sight
Improving Independence for Older Blind Persons

Purpose

To support independent living for older blind persons by:

1. Authorizing training for independence for older blind persons under Medicare; and

2. Covering the cost of devices providing blind persons with access to product labels and instructions as a part of any federally established prescription drug benefit.

Background

Training for Independence: The Alliance on Aging Research reports that visual impairment is one of the top four reasons for losing independence, contributing to new medical and long-term care costs exceeding $26 billion annually. The average cost of care for each older person living independently is $4,800 annually, compared to $36,600 for an individual in custodial care, frequently at public expense. In addition, 18 percent of all hip fractures among seniors have been attributed to age-related vision loss, and the average cost of care for one fracture alone is $35,000, resulting in an annual cost of $2 billion, mostly paid by Medicare.

The one-time cost of training provided to blind seniors is only a fraction of the continuing annual cost of custodial care, but only 5 percent are served with current funding. The rest fend for themselves or are warehoused in custodial care facilities at public expense. When trained, however, older blind persons can go safely from place to place, perform daily living chores, and use appropriate aids and devices. Consistent with the goals of Medicare, those who receive these services are able to continue living independently in their own homes and communities.

Accessible Prescription Information: Studies indicate that 75 percent of applicants for training due to vision loss report difficulty reading, citing prescription information as a primary concern. This is a growing problem as people age and lose sight, contributing to loss of independence due to fear surrounding the incorrect use of prescription drugs. According to the Alliance on Aging Research, over 90 percent of persons age sixty-five or older use at least one prescription, and most take two or more each day. At age seventy-five the average person can be expected to need five prescriptions daily, while many take twelve or more.

Currently there is no requirement for prescription drug labels and instructions to be presented in any form other than standard print. This was the only means available until quite recently, but now easy-to-use digital speech technology is a practical low-cost alternative. Using this technology, prescription information can be spoken aloud without altering the visual appearance of the printed label. Widespread use of this technology will make it possible for older blind persons to use their prescriptions correctly, supporting their independence.

Existing Law

Chapter II of Title VII of the Rehabilitation Act of 1973, as amended, authorizes grants to state vocational rehabilitation agencies to provide independent living services to blind persons, beginning at age fifty-five. These services include visual screening, independent living skills training, such as orientation and mobility and daily living skills, and other appropriate services needed for older individuals to live independently. This program is currently funded at $25 million annually. While funding has grown in recent years, this is still a very small program, leaving 95 percent of older blind individuals not served.

Acknowledging the need, the Centers for Medicaid and Medicare Services (CMS) has authorized payment for some rehabilitation assistance for blind Medicare beneficiaries when the services are performed by approved providers, such as physical or occupational therapists supervised by a physician. Although this is a beginning, CMS lacks statutory authority to designate state vocational rehabilitation agencies as approved providers. Consequently, the cost of assistance to older blind persons, provided by knowledgeable rehabilitation personnel, is seldom allowed as a Medicare expense.

Proposed Legislation

Congress should amend Title XVIII of the Social Security Act to authorize Medicare coverage of independence training for older blind persons and to include coverage for the cost of devices providing blind persons with access to product labels and instructions as a part of any federally established prescription drug benefit. The combination of these provisions will ensure that older blind Medicare beneficiaries have the training and information they need to live with dignity and independence.

As an approved provider the state vocational rehabilitation agency could receive reimbursement under Medicare. Services obtained from private providers chosen by beneficiaries would be supervised and paid for by the state with Medicare reimbursement. This approach would utilize a well-established and accountable system for the delivery of independence training services to be extended to older blind Medicare beneficiaries while also allowing them to exercise choice when selecting among service providers.

Training is essential, but having a means of access to printed information is also important for the blind. This is particularly so for older persons to manage use of prescription drugs when living independently. With advancements in miniature digital technology, several low-cost solutions to this problem have emerged. However, the pharmaceutical industry has no standard for their use, due to the lack of any widespread requirement and means of paying the minimal cost involved.

The devices presently available use small computer chips to produce product labels and instructions in an audio (spoken-word) format. In some instances the information must be recorded by the pharmacist or another person. One device provides audio information in synthetic speech, produced from a special label printed at the pharmacy. The nominal cost for using any of this technology would apply only to prescriptions for individuals who require the information in a format other than print. Coverage under the Medicare program will lead to a nonvisual access standard in the industry and result in low-cost, widespread use.

Please assist blind Americans by supporting training for independence for older blind persons and accessible prescription drug information when legislation to achieve these objectives is introduced and considered in Congress.

Removing the Penalty for Working:
Common-Sense Work Incentives for Blind
Social Security Beneficiaries

Purpose

To amend Title II of the Social Security Act to increase the level of earnings allowed for blind individuals without a penalty for working.

Background

By increasing the Social Security earnings limit in 1996, Congress provided a powerful incentive for seniors age sixty-five and older to work. Advocates made the case that seniors would continue to work, earn, and pay taxes since they could do so without fearing loss of income from Social Security. Now the need for a higher earnings limit for the blind is even more compelling because of an all-or-nothing penalty for working above it. However, Congress has disregarded this in the case of the blind while encouraging seniors to work by removing the earnings limit altogether.

For blind persons, gross earnings exceeding $1,330 monthly ($15,960 annually) cause complete loss of benefits until age sixty-five. At that point there is no limit on the amount that same individual can earn. This is the inequity that now exists.

Existing Law

Like "retirement age," "blindness" is specifically defined in the Social Security Act and can be readily determined. By contrast, evaluating "disability" is more subjective, requiring a finding of "inability to engage in substantial gainful activity." Reaching this finding is complex and not clear-cut.

Although blindness is precisely defined, monthly benefits are not paid to all persons who are blind but only to those whose earnings (from work) are below an annually adjusted statutory earnings limit. No penalty for personal wealth is derived from any source other than work. In the case of the blind, work alone is penalized. Recognition of the earnings limit's impact on seniors prompted Congress to change the law. The present situation for the blind is the same as it was for seniors prior to 1996.

Need for Legislation--Examples

For blind people who find work, earnings will usually not replace lost benefits after taxes and work expenses are paid. Therefore few beneficiaries can actually afford to attempt significant work. Those who do often sacrifice income and the security of a monthly check. The following examples illustrate the penalty for working.

A single person with no dependents, having annual cash benefits of $10,000 or roughly $830 per month (an average benefit), with no other income, receives this amount tax-free. Gross pay to replace benefits would have to be approximately $17,500, taking into account taxes and work expenses (such as commuting and buying appropriate clothing for work). This is $1,540 above the amount allowed. Earnings below $17,500 would mean a loss. While some individuals will still choose to work, most won't because they can't afford to lose income.

If the beneficiary has dependents, the situation is more troublesome. With two dependents the family's total benefit is likely to average approximately $15,000 annually. Therefore earnings of $16,000 (just above the limit) will not replace benefits. Using conservative assumptions, such as taxes figured at 25 percent of gross pay and childcare for two children at $500 per month, replacing $15,000 in benefits would require about $27,750 in gross pay. When dependents are involved, the choice to work or not to work is more constrained, and the amount needed to replace everyone's benefit far exceeds the blind person's earnings limit.

Action Needed

Increasing the earnings limit to $30,000 over five years will allow blind people to work without being penalized financially for doing so, providing more than 100,000 blind beneficiaries with a powerful work incentive. At present a blind individual's earnings must not exceed a strict monthly limit of $1,330. When earnings exceed this threshold, the entire sum paid to a primary beneficiary and dependents is abruptly withdrawn after a trial work period. The economic risk resulting for a blind head of household is far greater than any economic benefit derived.

An increase in the earnings limit would be cost-beneficial. With a 74-percent unemployment rate, the significant majority of working-age blind people are already beneficiaries. Providing them with a meaningful work incentive would allow them to become taxpayers as well. Congress raised the earnings exemption for seniors, and only Congress can do the same for the blind. The chance to work, earn, and pay taxes is a constructive and valid goal for senior citizens and blind Americans alike.

Congress should enact mandated increases in the blind person's statutory earnings limit. Please support blind Americans in removing the penalty for working.

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