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NATIONAL COUNCIL ON DISABILITY

STATEMENT OF SANDRA S. PARRINO, CHAIRPERSON
ACCOMPANIED BY:

JOHN GANNON, CHAIRPERSON, HEALTH INSURANCE COMMITTEE
ETHEL BRIGGS, EXECUTIVE DIRECTOR

BUDGET REQUEST Senator HARKIN. Our next witness is Sandra S. Parrino, chairperson of the National Council on Disability. Now, we have the National Council on Disability, 'Sandra S. Parrino, chairperson, and Ethel Briggs, executive director.

The National Council on Disability is an independent agency comprised of 15 members appointed by the President and confirmed by the Senate. It is an advisory body whose mandate is to examine broad-based Federal policies relating to persons with disabilities, and to make recommendations to Congress and the President on how these policies can be improved.

The fiscal year 1992 request is $1.64 million, a 14-percent increase over fiscal year 1991. We are pleased to have you testifying today, Ms. Parrino.

Ms. Parrino, the Americans With Disabilities Act is now law, and I look forward to working with you and the Council in the coming months on its implementation. Thank you for your hard work, and your statement will be made a part of the record in its entirety. Please proceed as you so desire.

Ms. PARRINO. Mr. Chairman, it is a pleasure to be here with you today and to talk about the work of the National Council on Disability. I am accompanied by Mr. John Gannon, a member of the Council and chairperson of the Health Insurance Committee, and our executive director, Ethel Briggs.

An extended version of my testimony has been submitted for the record and, Mr. Chairman, with your permission I would like to summarize my testimony.

Senator HARKIN. Please.

NATIONAL COUNCIL ON DISABILITY Ms. PARRINO. The National Council on Disability received approximately $1.5 million in fiscal year 1991, and is requesting approximately $1.7 million in fiscal year 1992. I would like to point out that this is a small increase, mostly based on the increased cost of doing business as an agency. This increase allows us to keep pace with the cost of living.

The National Council attempts to develop public policy in a costefficient manner. The 15 presidentially appointed members of the National Council and its staff take very seriously their responsibilities to recommend solid and innovative policy, as well as to carry out its congressional mandates. As mandated, the National Council on Disability holds four meetings per year. These meetings last 3 or 4 days and are held around the country so that we can give people with disabilities the opportunity of participating in the work of the National Council.

Forums, hearings, or other conferences are usually held in conjunction with the quarterly meetings of the National Council. For instance, this month our spring quarterly meeting will be held in conjunction with the National Conference on Assistive Technology being convened by the California State University at Northridge. In addition, the National Council will be conducting its first public hearing on the financing of assistive technological services and devices for people with disabilities.

As you may recall, the National Council was mandated in the Technology Act of 1988 to conduct a national study on the financing of assistive technology for people with disabilities. This hearing is the first of three to be held within the next 16 months. In October 1992, we will cosponsor with the United Nations an international conference on assistive technology for people with disabilities to be held in New York City.

The purpose of this conference is to present high and low technology for people with disabilities. "ñechnology Equals Opportunity” is the theme of this conference. We strongly believe that technology has a significant impact upon the lives of people with disabilities; the difference between dependence and independence.

PREVENTION OF PRIMARY AND SECONDARY DISABILITIES

The area of prevention of primary and secondary disabilities continues to be a priority of the National Council, especially the prevention of secondary disabilities. The National Council appreciates the leadership and support of you, Mr. Chairman, in the introduction of the Disabilities Prevention Act of 1991. The members of the National Council eagerly await the passage of this bill and offer our assistance in this endeavor.

The National Council believes that the passage of this bill will ensure the establishment of disability prevention programs focusing on primary and secondary prevention in each of the 50 States and territories. As I mentioned previously, the National Council's primary concern is the prevention of secondary disabilities in that most of the people we represent already have some type of disability.

The National Council recognizes that there tends to be a large amount of misunderstanding among many of the disability-related groups regarding secondary prevention. Therefore, we suggest that one way to address this issue is to have one of the States develop a model program on the prevention of secondary disabilities which can then be replicated in other States.

The National Council continues to enjoy a cooperative working relationship with the Centers for Disease Control. In fact, we are very excited about the National Conference on the Prevention of Primary and Secondary Disabilities that the National Council is cosponsoring with the Centers for Disease Control and the Minority Health Professions Foundation in June of this year.

This conference will focus on the prevention of chronic disabilities, birth defects and developmental disabilities, injuries, and the quality of life. These four working papers will serve as the basis for the development of a national plan for the prevention of disabilities as recommended by the National Council in its 1986 special report, "Toward Independence."

Another priority of the National Council is the financing and provision of personal assistance services for persons with disabilities. We are concerned that for many people with disabilities the Americans With Disabilities Act will be only mere words without personal assistance services such as readers, interpreters, and attendants.

The National Council made recommendations pertaining to this critical need in "Toward Independence" and we have continued to focus on this area of critical need for people with disabilities. The National Council recently held a hearing on this issue, and we are in the process of developing a report with recommendations that will be submitted to the Congress and the President.

Health insurance is of major concern to the National Council, and the Council has initiated an 18-month study in this area. People with disabilities and their families face many barriers in the provision of health insurance based upon the notion of preexisting conditions. The National Council study will address this issue and others related to this problem.

As you know, our enabling legislation, the Rehabilitation Act of 1973 is coming up for reauthorization. The Council has conducted two national hearings on this subject and will shortly be sending Congress a report on its recommendations. The National Council heard from people with disabilities, family members, governmental officials, educators, service providers, and representatives of advocacy and other disability-related organizations concerning their recommendations on how the act can better serve people with disabilities.

We found that there is a tremendous amount of interest in this act, and individuals are taking the reauthorization very seriously in that they see this as an opportunity to make changes. Mr. Chairman, the National Council looks forward to working with you and your committee on the reauthorization of this most worthwhile piece of legislation.

The National Council is happy to report that we have signed an interagency agreement with the Indian Health Service in order to begin to look at the unique problems faced by native Americans and native Alaskans with disabilities in this country. The National Council continues to be concerned about other minorities with disabilities as well as individuals with disabilities in rural areas.

Furthermore, the Council continues to have a focus on the education of students with disabilities, and we are asking the question: Are students with disabilities receiving a quality education?

AMERICANS WITH DISABILITIES ACT On July 26, 1990, President Bush signed the Americans With Disabilities Act into law. The members of the National Council and I would like to thank you for your tremendous efforts on behalf of this landmark piece of civil rights legislation which we originally drafted in 1987.

In the ADA, the National Council is directed to conduct a study on wilderness accessibility. Funds were not allocated, however the National Council began looking at this issue with a hearing last August, and we have undertaken a preliminary study in this area. The National Council appreciates the $200,000 this committee appropriated to us to undertake technical assistance activities related to the Americans With Disabilities Act.

ADA WATCH

As this committee knows, a law of the magnitude of this one requires a considerable and sustained technical assistance effort. As the originators of the law, we share with this committee a special commitment to ensuring that the long-overdue promises made by this law become reality in every corner of this country. Toward this end, we have initiated an activity we are calling the "ADA Watch."

The idea of “ADA Watch” came from the human rights watches now functioning now all over the world. These watches monitor human rights on all continents, and they regularly provide information about the status of human rights to the public, frequently testifying before Congress. The Council particularly liked this idea, since there really is no one entity looking over the implementation of the entire law.

As you know, the law is being administered by four different Federal agencies and is in the jurisdiction of five congressional committees, four in the House and one in the Senate. The goal of the watch is to keep a public focus on issues and regularly provide accurate information about those issues. While the traditional human rights watches examine only violations, the “ADA Watch" will examine the entire spectrum of implementation of the law.

The “ADA Watch” will keep a spotlight focused on how ADA is being implemented, especially how it is empowering persons with disabilities. The “ADA Watch” will examine the various ways in which business and industry are implementing the law, with a special focus on the creative solutions which will be generated in various settings. The "ADA Watch” will provide a forum for persons with disabilities to tell their individual stories of the impact the law has had on their lives.

The "ADA Watch” will accomplish these goals by engaging in a series of activities, including site visits, hearings, and discussions with people around the country. The watch will issue reports to the Congress and the President describing our progress in implementation. One of the most significant aspects of a watch is that it is sustained over time. We are told that watches which are attempted in a quick-fix, one-shot fashion are doomed to failure. Sustaining this watch over time will be critical if it is to be effective. We will keep vigil, and we will report on how the country is progressing toward the goals of equal opportunity, full participation, independence, and economic self-sufficiency for persons with disabilities.

PREPARED STATEMENT Finally, Mr. Chairman, I recall the final Senate debate on ADA when you left all of us greatly moved by your remarks in both speech and sign language. Yours and Senator Hatch's references to relatives with disabilities and the effects of the ADA on their lives serve as testimony to your commitment to Americans with disabilities. We at the National Council appreciate the support of all the members of the subcommittee for their work.

With your continued support, the National Council will continue to pursue vigorously its goals of independence for all Americans with disabilities.

Thank you, and we will be happy to answer your questions. [The statement follows:)

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