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draft report on the reauthorization of the Act is being revised to reflect the deliberations of the National Council. As soon as this report has been finalized, we will be pleased to share it with the Members of the subcommittee.

What can you tell us about the nature of the reforms you'll be recommending?

During the four days of hearings which were held by the National Council, every effort was made to take a comprehensive look at each Title of the Act and to see what changes need to be made. While the National Council's specific recommendations will be embodied in the final report, one overriding concern which was reiterated throughout the hearings is the need to provide persons with disabilities a greater voice in determining what services they need and how these services will be delivered. While this may appear to only effect Title I of the Act (which is the Basic State Grant Program) this in fact is becoming an underlying principle of all aspects of rehabilitation services, including research and training efforts. In addition, the subcommittee should be aware that the National Council plans to make specific recommendations for each section of the Act in our final report.

NIDRR 5-Year Plan

One of the Council's mandates is to work with the National Institute on Disability and Rehabilitation Research (NIDRR) on the development of their 5-year plan. I understand that after a good deal of delay, progress is being made toward formulation of a new plan--one long overdue. The Department of Education anticipates that it will have a plan in effect around June of 1992.

What, generally, are the Council's recommendations to the Department for reform of the plan?

The National Council on Disability is pleased with the three-stage planning process of data collection, of development of papers by experts, including consumers and then, writing a plan. The National Council has supported this process of strong consumer and expert input into the development of the plan as an ongoing process. The National Council and NIDRR worked together on the first public hearing in the NIDRR planning process, held in Washington, D.C. in November 1990. National Council members will participate in the six public hearings which will be held in June in various locations in the United States. The National Council is also represented on the 15-member Executive Committee NIDRR Planning Process which will guide the process of development of expert papers.

Does the National Council see research implications for NIDRR in passage

of the ADA?

Yes, of course, there are many research implications for NIDRR as a result of the passage of the ADA. NIDRR is already planning a multifaceted program to support the implementation of the ADA. In addition to this effort, research should address the effectiveness of the ADA through longterm monitoring and other approaches in order to document the impact of the ADA in the lives of persons with disabilities. Passage of the ADA impacts heavily on various sectors in society and cost data should be collected in areas such as reasonable accommodations and readily achievable environmental modifications. The ADA mandates assistive technology and environmental modifications for which engineering and technical standards research are needed.

Individuals with disabilities continue to face problems in the cost and adequacy of health insurance and health-related services. Studies in this area would show the magnitude of the need and identify services and finance problems. Finally, the impact of the ADA on individuals with severe disabilities and individuals who are elderly may require special attention.

Disability Prevention Program

As you know, the Centers for Disease Control runs a primary and secondary disabilities prevention program. You have been critical to the development and growth of this important activity. How do you think the program is working?

The National Council has a very good relationship with the Centers for Disease Control (CDC). Our Council tends to focus on the prevention of secondary disabilities even through we are concerned about the prevention of primary disabiliteis. Most of the people we serve, are people who already have some type of disabilities. Very often people with disabilities will die from secondary conditions, not from the primary disabilities. The National Council feels very strongly that the prevention of secondary disabilities must be interwoven into the public health and health care systems in this country.

Annual Reports Update

What is the status of the National Council's annual reports for fiscal years 1989, 1990 and 1991 on the condition of research affecting persons with disabilities and the activities of RSA and NIDRR?

The National Council's annual reports for fiscal year 1989 and 1990 on the condition of research affecting persons with disabilities and the activities of RSA and NIDRR have been combined into one volume and is available.

Material and research for the National Council's annual report for fiscal year 1991 is being compiled. A preliminary draft report is expected this summer with the final report expected by year's end.

What is the status of the National Council's annual reports for fiscal year 1989, 1990 and 1991 on the progress that has been made in implementing the recommendations contained in the National Council's January 30, 1986, report, Toward Independence?

The National Council produced a special report for fiscal year 1989, entitled, The Education of Students with Disabilities" Where Do We Stand?, which was in accordance with the statutory mandate of the National Council which authorizes special report to the President and Congress regarding the progress of implementing recommendations contained in the National Council's 1986 report, Toward Independence.

A special report for fiscal year 1990 on the Americans with Disabilities Act is now under way, and will be released within the next few months.

A special report for fiscal year 1991 is in the planning and conceptual stages and is expected to be released by January 30, 1992.

Health Insurance

What were the findings of your preliminary study, to have been conducted in fiscal year 1990, on health insurance for persons with disabilities?

The National Council on Disability conducted a preliminary study on health insurance and health-related services problems experienced by persons with disabilities. The study entitled, Potential Study on Health Insurance and Persons with Disabilities, was submitted to the National Council in January, 1990. The document was an assessment of the need for a national level study. At that time, a number of national-level government or private sector agencies and organizations were conducting health insurance studies which had some relevance for individuals with disabilities. Findings from the National Council's preliminary study indicated that the health insurance and health related services problems faced by individuals with disabilities were

nsufficiently covered in other studies, such as that of the Pepper Commission.


The National Council's needs assessment indicated that this agency could play a vital role in articulating and promoting a disability >erspective in the national dialogue on health insurance reform. 1 role would, at least partially, mitigate the impact of the omission of health insurance and health-related services protection under the Americans with Disabilities Act. In addition, a study would address the lack of a support system for non-medical services for individuals with disabilities, such as personal care assistance, interpreters, assistive technology and readers. The National Council's preliminary report identified the following specific issues which a future study might address: a) pre-existing condition exclusions, b) lack of adequate health insurance as a work disincentive, c) adequacy of the breath of coverage, d) high cost of health insurance.

How was your study conducted?

The National Council on Disability used the following information gathering and data collection methodologies in conducting this preliminary study: a) literature review, b) discussions with staff conducting federal agency and private sector studies, c) attendance at forums on health insurance, d) meetings with members of the health insurance industry and other service providers, regulators and


Were your findings published?

Since this effort was a preliminary study, findings were not published. However, findings were shared widely in discussions with study participants and other interested persons. This study was used as an in-house document.

Personal Assistance

The National Council conducted hearings last summer on personal
assistance services for individuals with disabilities.
hearings lead to any policy recommendations?

Did these

On January 9th and 10th, the National Council began hearings on issues surrounding the provision of personal assistance services for persons with disabilities and their families. During these two days of hearings, we focused on financial barriers to the provision of personal assistance services and how these barriers can be overcome. Throughout these two days of hearings, a cross section of groups which require Personal Assistance Services testified about their unique needs in this area. For example, Council members heard from several groups who provide Personal Assistance Services to elderly persons. Many of the groups testified that individuals who are elderly often require these services either because they are no longer mentally capable or their family members are no longer able to care for them for a variety of reasons. We also heard from a panel of witnesses who have physical disabilities as well as those with cognitive


Two persons who testified on behalf of persons who have head injuries explained that this population has unique and ongoing needs due to the nature of their disabilities.

Perhaps the most interesting panel was the one which discussed at length the financing of Personal Assistance Services. During this panel, we heard from both state and local administrators as well as a the World Institute on Disability. All three of these witnesses explained that, even with the most flexible Personal Assistance program, there is currently not enough money to provide services to all of the individuals who request them. Additionally, there is a wide discrepancy between states with regard to who is eligible for services and what services are provided. This diversity among states compounds the already difficult problem of providing Personal Assistance Services to persons with disabilities. A transcript of these hearings is being prepared by Council staff. When this transcript becomes available, we will be pleased to share it available with the Subcommittee.

To whom were these recommendations made, and how would you characterize their reception?

The National Council is still reviewing the recommendations made at
the hearings on Personal Assistance and thus, no formal
recommendations have been submitted to the Congresss. However, it is
clear that this issue will require the thoughtful consideration of
several Congressional Committees if our nation is to have a
comprehensive Personal Assistance policy because these services are
currently funded through a variety of programs, including Medicaid,
Developmental Disabilities programs and Title XX Social Services Block
Grant. As the National Council develops a comprehensive policy for
Personal Assistance Services for persons with disabilities, we will
carefully consider all of the appropriate Congressional Committees.

Assistive Technology Study

The National Council received $250,000 in fiscal year 1990 to conduct a study on the financing of assistive technology for individuals with disabilities. What is the status of that study?

The National Council on Disability received funding for a national
study on financing of assistive technology under Title II of P.L. 100-
407. As mandated by law, the National Council has named an advisory
Committee composed of consumers and their families and experts in
relevant areas of assistive technology finance. The advisory
committee has met once. The National Council awarded the contract for
the 16-month study to United Cerebral Palsy Associations, Inc.
contractor has completed two deliverables, a 2-day forum and a
literature review. Two other forums are required by the contract.
They will be held in July, 1991 in Portsmouth, Maine and in October,
1991 in Bloomington, Minnesota. Other deliverables appear to be in
the process of development and generally, the contractor is meeting
the task time framework.


Special Education Study

We provided $400,000 for fiscal year 1990 for a study in the area of special education. What is the precise status of that study?

The National Council awarded the contract to Towson State University
to study the effectiveness of education programs in meeting the needs
of students with disabilities. This study is to measure the quality
of the educational services which students with disabilities using
three basic criteria which are: 1) academic achievement, 2) work
readiness, and 3) quality of life. In order to study these three
basic criteria, the National Council's education project will go into
six states and survey parents of students with and without
disabilities, educators and employers to gain a better understanding
of how students with disabilitis are faring in these three fundamental
areas. Specifically, the study will survey 1700 student, 1700 parents
and 600 educators and other persons working with these students.

While the six states have not yet been determined, Towson State
University has collected data from the Office of Special Education
Programs (OSEP) was well as a variety of other sources collected on
students in elementary and secondary education. Using this data,
Towson State University has done a specific methodology called
"cluster analysis" which separates groups of states which have similar
profiles in terms of providing educational services to students with
disabilities. The National Council believes that because this project
will use both quantitative (such as the cluster analysis and other
data collection methodologies) and ongoing qualitative research (such
as the surveys which will be done) this study is likely to give the
Congress some fresh information about the implementation of the
Individuals with Disabilities Education Act (formerly EHA).

In addition to collecting data and setting up the project, Towson State University has also begun developing the survey instruments which will be used in each of the six states. Clearly, these survey instruments will be critical to the success of this project. Towson State University hopes to begin these surveys in the late spring.

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When do you anticipate its completion?

Towson State University is scheduled to submit the final report to the National Council in May of 1992. However, the project is submitting quarterly reports and also meetings with members and staff of the National Council on a regular basis.

What are your preliminary findings?

Since this project is still in its infancy, it is too early to project even preliminary findings. However, the project is gathering some significant data which, when completely analyzed, should give a more complete picture of where and how students with disabilities are receiving educational services.

Will the Council make any policy recommendations based on this study?

Once the report has been completed, it is very likely that the National Council will make policy recommendations which are based on the study's findings. As the Subcommittee is aware, the National Council has been deeply concerned about the education of students with disabilities for some time. By asking the three fundamental questions which we have outlined above, the National Council is confident that this study will lead to sound public policy for students with disabilities and their families

Disincentive to Employment

Following the Council's forum in fiscal year 1990 on Social Security and disincentives to employment, did the Council make policy recommendations to the Congress for program reform?

In November, the National Council sponsored a symposium on the development with of a national employment policy for persons with disabilities. Included in this symposium was a discussion of work disincentives for people with disabilities. The National Council is proud of this symposium because it brought together some of the finest academicians in the country to discuss the critical issues surrounding the employment of persons with disabilities. A monograph outlining the deliberations of the symposium will available in the near future. We will be pleased to make the Subcommittee aware of any policy recommendations which are made as a result of the forum.

Disability Prevention

What was the outcome of the Council's two "working sessions" with CDC, planned for fiscal year 1990, on the prevention of secondary disabilities?

The results were very good. From one of these sessions, a monograph as been developed on the prevention of secondary disabilities among people with spinal cord injuries.

Did the working sessions result in any concrete plans with CDC for dissemination of finding or policy recommendations?

As indicated above, a monograph was developed from one of the sessions. The National Council in conjunction with CDC and the Association of Minority Health Professions are in the process of planning a national conference on the prevention of primary and secondary disabilities in June of this year.

What is the status of the Council's proposed conference, to be cosponsored with CDC, on the prevention of both primary and secondary disabilities?

The conference on the prevention of primary and secondary disabilities will be held June 5-7, 1991 in Atlanta, Georgia. The conference will be based upon four working papers: Injury, Birth Defects and Developmental Disabilities, Chronic Conditions and Quality of Life. These papers along with input from the conference participants will

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