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Again, we thank the Subcommittee for the opportunity to address the HHS Fiscal Year 1992 priorities. We look forward to working with

the Members and staff.

Additionally, it is our intention to submit supplemental

documents amplifying the points that we have introduced.

On behalf of the Officers, Executive Committee, and members of the National Association of Retail Druggists, we thank you for the opportunity to appear and continue to participate in the formulation of the appropriation of HHS.




Senator REID. I would ask to come forward Joseph J. McNulty, the director, and Michelle Smithdas, the instructor of the Helen Keller National Center. I may not have done well with Michelle's last name, but I think I did the first name OK.

Mr. MCNULTY. Good morning, Senator. I am Joe McNulty, the Director of the Helen Keller National Center, and my purpose for coming before you today is to ask for additional funding for the center to carry on its mission.

With the recent passage of ADA, we have seen barriers dealing with transportation and discrimination on the job site removed. Our mission as an agency is to provide skills training to deaf/blind individuals so that they may enter the job market.

I have asked Michelle to speak to that issue as a former client who has come through our program and is now presently an instructor with the agency.

Senator REID. Pull that microphone forward so we can hear Michelle. Please proceed.

Ms. SMITHDAS. Mr. Chairman and members of the committee, I want to share something with you all. When I became deaf/blind, I felt doomed and lost. I knew I could not rely on my family, which I was doing heavily. I had to go on.

Helen Keller National Center regional rep informed us about training for deaf/blind youths and adults in New York. Of course, I was interested in this. So, I left home and I came to New York to learn different skills that I needed to just communicate, finger spelling and signing, print on the palm, writing, being able to talk with other people and have them talk with me, being able to use interpreters, go on to school, which I recently just finished.

Aside from communication, I have mobility. I have a cane with me which I use to travel independently alone. I have gone more than 3,000 miles on my own.

Aside from that, we have homemaking. I can cook, how to make food, how to care for a home, which I now have with my husband

who is also deaf/blind, totally deaf/blind. We manage our own home.

But that was not all. I needed to go on. I got a job at the Helen Keller National Center. I teach mainly braille, how to use it for writing and reading, being able to relate with the clients that I work so that they can also enjoy life just as much as I do. We go



Recently with the landmark act that was just passed last July, the ADA, we want to help our clients so that they will be able to partake and be a part of this act, but they need the training and the work experience which we now offer at the center. Many, many more things are offered at the center, but in order to do these things, we need help. We need your support and extra funding to be able to do this so our deaf/blind individuals can also be independent.

I thank you and hope that perhaps you all will come to New York to visit the Helen Keller National Center.

[The statement follows:]


Mr. Chairman and members of the subcommittee, thank you for the opportunity to testify in regard to our request for your continued support for the Helen Keller National Center for Deaf-Blind Youths and Adults (HKNC). My name is Joseph McNulty and I am the Director of HKNC. With me is Ms. Michelle Smithdas who is an instructor at HKNC.

As you know, HKNC is a congressionally established center, specifically authorized by federal law. HKNC serves people with the most severe of multiple disabilities: deafness and blindness. My purpose in coming before you is to urge you to increase additional federal funding for the operation of HKNČ. In fiscal year 1991, Congress appropriated $5,367,000 which supported approximately 85 percent of the agency's operating expenses. For fiscal year 1992, the President's budget recommends a slight increase, to $5,517,000.

While any increase is appreciated, it represents an increase of approximately 2.8 percent which does not match the inflation rate, let alone allow for program expansion. We request that Congress provide funding at the level of $5,867,000 for fiscal year 1992. Of this amount, we request that $200,000 be earmarked for capital improvements and major repairs.

The enactment of the Americans with Disabilities Act, signed by President Bush on July 26, 1990, ensures that employers will not discriminate on the basis of disability. We in the field of services to people with disabilities applaud the effort of our elected officials in passing this landmark piece of legislation. I especially want to applaud you, Mr. Chairman, for your leadership.

Attorney General Richard Thornburgh is quoted as saying that "the overwhelming support for this Act (ADA) demonstrates a mandate from the American people that all those with disabilities be allowed to contribute fully in the workplace and at last enter the mainstream of our society". But in order to contribute fully in the workplace, one must have the skills and support to perform the job. ADA states that employers may not discriminate against an individual with a disability in hiring or promotion if the person is otherwise qualified for the job.

If persons who are deaf-blind are to truly benefit from ADA, it is critical that HKNC continue to receive the funding necessary to provide the needed training. People who are deaf-blind have demonstrated that, when provided with the proper training and services, they have the ability to live and work in the community and contribute to society in a meaningful and substantial manner.

Of the eighty individuals who were served at HKNC during fiscal year 1990, forty-five had completed their training by the end of the fiscal year. Of these fortyfive, twenty, or 45 percent, were placed in employment settings ranging from competitive employment to a work activity center.

Thirty-one, or 69 percent, of the individuals completing training during fiscal year 1990 were assisted in finding an appropriate residential program.

Recognizing that the agency cannot possibly meet the needs of the total population through the headquarters program alone, HKNC has established a national network which includes the ten regional offices, twenty-nine affiliated agencies, the National Training Team, a specialist in services to older persons who are deafblind, and the placement department.

Last year these components served well over 2,000 individuals who are deaf-blind, either through direct contact with the consumer and/or the family or by providing technical assistance and consultation services to local service providers. Examples of the services provided include working with supported employment job coaches and staffs of community-based group homes to allow individuals who are deaf-blind to access these programs.

As states deal with the issue of deinstitutionalization of those who are the most severely handicapped, more individuals who are deaf-blind are being identified. The training of staff and the development of support services to sustain community living for a person who is deaf-blind is costly. State hospitals, developmental centers, etc., are turning to us for assistance.

Within the training program offered at our headquarters in New York, major changes have taken place in the curriculum to better meet the needs of this challenging population. Functional training in the areas of independent living, combined with expanded work experience both on and off campus, have provided the staff with a much more accurate picture of the individual's likes and dislikes, strengths and weaknesses. We are confident that this will lead to an even higher success rate when it comes to providing the clients we serve with an improved quality of life. At the outset, I requested funding of $5,867,000 for fiscal year 1992, which is an increase of $500,000 over last year's funding and $150,000 above the administration's recommendation.

Of this amount, $300,000 would be applied in fiscal year 1992 to meet increased operating costs and the addition of one new affiliate program. The remaining $200,000 would be set aside to be used specifically for capital improvements and major repairs.

The buildings and property occupied by the Center were constructed in 1976 at a cost to the federal government of approximately $7.6 million. While ongoing maintenance on a regular basis has kept the buildings in reasonably good shape, after fifteen years the physical plant is in need of major repair in several areas.

We are deeply concerned that safety could be compromised if those repairs are not made. For example, last year the cement canopy over the front entrance at HKNC collapsed. Fortunately, there were no injuries. One of the three buildings at the HKNC campus requires a new roof and we are concerned that the others may need the same in the near future.

The underground feeder cable which provides back-up generator power to one of the buildings is inoperable. The phone system, in operation since the buildings were constructed, has become increasingly unreliable and is in need of replacement. Also needed is restoration work on the expansion and control joints in the masonry walls, the concrete copings and cracks in the building facade.

Previous attempts to budget a large amount for this line item have been hampered by insufficient funding. Faced with the choice of setting aside the money at the start of the fiscal year, which would have resulted in staff layoffs and reduced services to clients, or putting the money into client services and hoping that a major repair was not necessary during the year, we always chose the latter.

Unfortunately, it is becoming increasingly clear that we must begin to invest a large amount of money into the buildings. If additional appropriations are not provided, the money will have to come out of other areas of the budget and clients will inevitably suffer.

Moneys set aside would only be used for this purpose and not applied anywhere else. Any portion of this money that went unused during the fiscal year would be applied for the same purpose in fiscal year 1993.

Thank you, on behalf of the individuals we serve, for your interest and concern. We will be happy to respond to any questions you may have.


Senator REID. It would be worth going just to visit with you again. Your testimony is certainly important. And I have to acknowledge that I am going to have to learn a lot more about the Helen Keller National Center because I know very little, and I will learn more.

I note that you have some construction requests and some concerns. Could you tell me what your No. 1 priority is for construction projects?

Mr. MCNULTY. Right now we have three or four major concerns. The roof of one of the three buildings on campus needs major repair, and we are reasonably confident the other two will soon follow. We did have a section of the canopy out in front of the main entrance actually collapse and fall to the ground last year. That has to be restored.

Senator REID. It hasn't been yet?

Mr. MCNULTY. No, sir.

Senator REID. Tell me the total amount of your-I will put it in the frame of-mandatory construction projects in the immediate future.

Mr. MCNULTY. We had requested the $200,000, and I am sure that all $200,000 would be used within the fiscal year.

Senator REID. Would that take care of the area that has collapsed?

Mr. MCNULTY. Oh, certainly, that as well as the replacement of the roof and one or two other major areas.

Senator REID. How large is the national center in area?

Mr. MCNULTY. We have 26 acres at the headquarters program in New York.

Senator REID. In that 26 acres, how much do you have in the way of buildings?

Mr. MCNULTY. We have three main buildings. We have the training building, the residence where the clients stay during their stay with us, and then we have a vocational and child care center.

Senator REID. How large are each of those three buildings?

Mr. MCNULTY. I really could not give you the square footage off the top of my head.

Senator REID. Bigger than this room?

Mr. MCNULTY. Oh, certainly, yes. They are the size of a junior high school or a high school complex.

Senator REID. Each one of them?

Mr. MCNULTY. The residence and the training building. The residence has about 60 bedrooms in it along with a cafeteria and office space, et cetera.

Senator REID. Thank you very much for your testimony.
Mr. MCNULTY. Thank you.


Senator REID. I would ask that Michael J. Evanisko for the Partnership of Organ Donation come forward. Please proceed.

Mr. EVANISKO. Mr. Chairman, good morning. Thank you for inviting me to appear before the committee this morning. Thank you especially for pronouncing my name correctly. That does not happen all that often.

I am Mike Evanisko, managing director of the Partnership for Organ Donation, a nonprofit organization that has been created to solve the desperate shortage in organs for transplantation. I will submit my testimony for the record, but I would like to make some brief comments.

The facts about organ transplantation and donation have been fairly well established at this point. Transplantation works. In fact, the United States is a leader in providing this technology to its citizens. The waiting list is large and it is growing. Over 22,000 people wait for organs. Since we have been here this morning, four people have been added to the list. Someone is added every 30 minutes. And 12,000 to 15,000 potential donors exist, but only one-fourth to one-third of these people do, and that is an outcome that is fatal for thousands and, in fact, organ donation has been stalled for 5 years now.

Our organization started a program working with the Kentucky Organ Donor Affiliates, the OPO in Kentucky. Over the last 12 years, organ donation there has increased 30 percent while it has been flat across the country. We are extending this program now into the northern California area that also includes the Reno, NV, area. We are working in the D.C. area, and we are working in the States of Minnesota and North and South Dakota.

As a result of our efforts, I think organ donation is really about people. It is about people who need organs to save or improve their lives. This often affects minorities. Minorities are much more likely, black Americans and Hispanic Americans in particular, to need kidney donation, and they are particularly afflicted by the shortage.

Organ donation is also about the people who pay for organ donation. The end-stage renal disease is a very expensive program, and, in fact, organ transplantation is far more cost effective than is maintaining a patient on dialysis.

Getting beyond these things, which I think are pretty well understood, though, is that organ donation is about the people who are asked to donate a family member's organs and about the people who make the request. I think counter to much of the prevailing thought, we do not believe that public awareness is an issue. Next week is organ donor awareness week. I think we can declare victory today. Over 90 percent of Americans in survey after survey are aware that there is an organ donor shortage. They are aware a transplant works. They would be inclined to donate their own organs. They are supportive of organ donation. Awareness is not the issue, and I think that we have achieved all of the goals on aware


I think with the public there are two main objectives. One is translating that awareness into support for organ donation and having families make a decision that they will donate if that ever happens to them. If there is an educational objective-and I believe there is-it is with minorities who are less informed about transplantation, though they need it more, and who often have many misperceptions about the donation process.

I think the core of the program and what I would like to leave you with is that we do not have a national organ donor shortage. We have 70 or so regional organ donation shortages, but more to the point, we have a few hundred hospitals, less than 10 percent of the hospitals, in this country that see the patients who become brain dead. And at those hospitals what matters is how families are asked, when families are asked, where families are asked. It is a time when they are grief-stricken. They are distraught. They

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