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JUSTIFICATION FOR FY'92 REQUEST OF $201 MILLION FOR NIDCD

At NIDCD, the number of our applications are increasing
dramatically:

1989 254 applications
1990 349 applications

1991 472 applications Now Predicting: 1992 562 applications

No other Institute at NIH is having that kind of explosion.

The FY'92 professional judgement budget (PJB) for NIDCD is $201 million. This has been determined because of the escalation of applications, yet, it would only allow a success rate of 42%.

The vast majority of increased $ in the PJB recommendation is for RESEARCH. There is a $30 million increase over the President's Budget, but it only would allow for a 42% success rate.

# This figure will allow support of 399 noncompeting grants and

reflects a compliance with eliminating downward negotiations.

++ Will allow 232 new and competing grants at 100% of

recommended cost. Will target studies in molecular biology and molecular genetics of hearing and other communication processes.

H It provides an additional $11 million for Centers that would

allow NIDCD to fund 9 Clinical Centers, 10 RTC's (Research Training Centers), 5 Exploratory Research Awards, and 5 Core Centers. (Core Centers are awarded to an Institution. which receives 4 R01 grants to encourage shared services, thereby, reducing expenses.)

++ It would allow an additional $2,300,000 for TRAINING for 59

additional full-time training positions plus a stipend increase.

++ It would enable the NIDCD to provide a major increase in the

CONTRACTS line-$3,400,000. We're supporting major work in cochlear implants, which will be expanded to include hearing aid users. The Clearinghouse is proceding on schedule and is included in the contracts.

We have an opportunity to initiate a study of the efficacy of
Neo-natal hearing testing in collaboration with the Maternal and
Child Health (part of Public Health Service)

Would allow a small INTRAMURAL program to grow and expand ongoing activities-$5 million.

Expanded Funding would allow for the expansion of an Epidemiology Program initiated in FY'91 and a modest expansion of ongoing activities. It would also support a public education campaign to prevent noise-induced hearing loss.

THE NIDCD ADVISORY BOARD RECOMMENDS $201 MILLION FOR FY92 IN ORDER TO TAKE ADVANTAGE OF THE TREMENDOUS RESEARCH OPPORTUNITIES BEING PRESENTED TO US VIA THE DRAMATIC INCREASE IN APPLICATIONS. A SUBSTANTIAL INCREASE WOULD ALLOW NIDCD TO EXPAND ITS QUEST OF FINDING PREVENTIONS, CAUSES, AND CURES OF DEAFNESS AND OTHER COMMUNICATION DISORDERS FOR 48 MILLON AMERICANS.

Caitlin Hala Parton

Every child is different and special. This is certainly true of Caitlin. She contracted H-flu meningitis at the age of 23 months. As a result, Caitiin has a profound hearing loss. This experience turned our lives upside down, and mandated enormous change and challenge.

Caitlin had been a verbally precocious child, and it made sense for us to commit all our resources and abilities to keeping her in a hearing and oral world.

Fortunately, we were introduced immediately to The New York League for the Hard of Hearing. At the age of 24 months, Caitlin had powerful hearing aids and had begun the rigorous schedule of attending six to eight hours of intensive hearing and speech therapy a week.

She continues at the League, currently attending four hours of therapy a week. We are very involved with this wonderful organization and would come to your school with the full support and back-up help of their experience and services.

Due to the extent of Caitlin's hearing loss, she became a candidate for the new 22 channel cochlear implant. At the time of her surgery (January 1988), Caitlin was the 60th child and the youngest in the world to have this device implanted.

Choosing this option has made Caitlin a true pioneer, and it has brought dramatic results. She has surpassed everyone's expectations. She is the only child in the world to use the implant in combination with the FM hearing aid system. Essentiallyi her brain is synthesizing these two different codes. She likes wearing the devices and likes hearing.

Caitlin hears and understands speech, environmental sounds, music, and recently takes delight in talking to her grandparents on the telephone. Caitlin tells stories, and makes up songs. She is expressive and wants to communicate. Her auditory perception augments excellent speech reading, age appropriate language skills, and her speech is intelligible.

She is bright, disciplined, curious, and imaginative. Her concentration, bravery, and humor help her, and she makes continual improvement. All the advice we've gotten indicates that she, as other hearing impaired children, do best in a nurturing situation of high expectations. She has been in mainstream preschool and camp situations from the onset of her hearing loss.

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Caitlin is a happy child with a

of humor and she loves to learn. Her major passions are books,

books, and art work. She enjoys fantasy play and the improvisational game that we've invented: "Uh-oh!", "Uh-oh what?" At which point, various imaginary heroes are confronted with great odds and we invent solutions.

During the past year, our family has experienced the loss of Caitlin's grandfather, a dear aunt, and her great grandmother. Caitlin had close, individual relationships with each, and saw them an average of once a week. During this difficult and sad period of illness and deaths, Caitlin struggled for her own comprehension of the experience, and she demonstrated unusual compassion and sensitivity to the myriad

feelings and family dynamics. She gave comfort, and in her own way helped care for these ailing family members as well the survivors.

We think her art work is fabulous! of course, are objective parents. Caitlin's drawings show great detail, are often narrative and humorous. Drawing and painting provide her with another means to express her feelings and experience of life. Her self portraits usually include her hearing aids, which seems to indicate a comfort and acceptan of herself.

We see her artistic ability as one of her greatest strengths, and are eager to have her in a school offering opportunities to explore the visual arts by designating time, talented teachers, and facilities to this discipline.

Caitlin does best in small groups. Large groups or noisy clusters are more difficult and confusing. These situations (such as large playground games) are facilitated by someone explaining the rules or activity first. Caitlin's own creative remedy to these situations is to latch on to one or two children and create a situation easier for her to control i.e. initiate the game.

She is persistent, as well as stubborn. She has great power of concentration, and sometimes she is unwilling to move on to the next activity.

She is fearless. She loves swimming, her new dance class, as well as climbing, hide-and-seek, and the whole gamut of vaguely terrifying playground activities.

Caitlin can be shy at times. Some visually engaging material usually helps to break the ice (book, crayons and paper, puppet).

Since her initial day care experience (15-23 moriths), Caitlin has "checked out the scene" before entering.

Caitlin is used to hard work. She does not learn language by osmosis. Listening is a conscious act that requires effort. (We are enclosing some notes from her speech therapist to her current teacher that may be useful for the interview.)

Life has already confronted Caitlin with great challenges and difficult odds. She has demonstrated a courage to take these difficulties in stride. We feel her spirit has led the way through a time of great stress and turmoil. In many ways, she has taught us more than we have taught her. This has been the feeling expressed by her teachers and counselors in the mainstream settings. Caitlin is generous and enjoys sharing, holds her own, and wants to participate.

We, and the numerous professionals involved with Caitlin,find her achievements outstanding. She is featured in the New York League's video THE SOUND OF HOPE with Richard Thomas, an Earl Ubell "Channel 2 News Science Report," and was selected to accept Mayor Koch's "Better ilearing and Speech Month" Award in 1988. The N.Y.U. Hospital Cochlear Implant team consider her their "star", and are excited by her "unknown limits."

We bathe Caitlin in sound and love, and she is thriving. We want to find a school that will embrace her with a holistic vision, and will provide the challenge, achievement, and joy of learning. we also want a school that welcomes parents as integral members of the support team so necessary for successful learning, discovery of self and the world.

Melody James and Steve Parton

Profile: RACHEL DUBIN

For the last three years, since she was eleven years of age, a young lady has testified before Congress on behalf of increased funding for the NIDCD. Her name is Rachel Dubin and, due to the numerous inquiries that we have received, we knew that you would be interested in learning more about her.

Rachel was first diagnosed as profoundly hearing impaired in her left ear at the age of 3 1/2. At this time her right ear indicated moderate impairment. The etiology of her hearing loss was unknown. By the age of 5 1/2, however, Rachel was profoundly hearing impaired in both ears. Today, Rachel benefits from wearing a hearing aid in her right ear but is unable to benefit from wearing one in her left ear.

Rachel's hearing loss has not stopped her from excelling in all she undertakes. She is currently a ninth grader at The Park School in Baltimore, MD, an independent school for normal hearing children, where she has been mainstreamed since the first grade. Rachel studies speech once a week, is extremely proficient at speech reading, and, admittedly, loves to talk!

In school, Rachel is involved in an accelerated French class, plays soccer, and has published articles in both her school's newspaper and foreign language magazine. For the past three years, Rachel has been stage manager for the drama group; and this year, she sells tickets and refreshments. It is obvious that Rachel is very caught up in the spirit of her school!

Outside of school, Rachel is extremely interested in human rights activities, such as Amnesty International, and environmental concerns. In the past, she attended Hebrew school for religious instruction and the learning of the Hebrew language. This culminated in her becoming a Bat Mitzvah last year. In 1983, she was the recipient of a national award for outstanding Hebrew and Judaic studies.

The child of loving and supportive parents, Esther and Ben Dubin, Rachel is a shining example of what we would wish for all of our children: to live enthusiastically and determined to participate in everything that life has to offer.

STATEMENT OF MAX RICHTMAN, EXECUTIVE VICE PRESIDENT, COM

MITTEE TO PRESERVE SOCIAL SECURITY AND MEDICARE Senator HARKIN. The next witness is Max Richtman, executive vice president of the Committee to Preserve Social Security.

Welcome again to the subcommittee, Max, and your statement will be made a part of the record in its entirety. Please proceed.

Mr. RICHTMAN. Thank you, Mr. Chairman. Well, Caitland is a tough act to follow, but I want to thank you, Mr. Chairman, Senator Gorton, and the other members of the subcommittee, for this opportunity to testify on behalf of the National Committee to Preserve Social Security and Medicare regarding the 1992 appropriations for the Department of Health and Human Services, especially the Social Security Administration expenses.

Our members, most of whom are senior citizens express concerns about the quality of service in Social Security offices, the lack of accessibility to offices, and poor response to telephone inquiries. The national committee appreciates the difficult decisions that the Appropriations Committee faces under the new restraints of last year's budget law. However, we also recognize the urgent need to provide service to the 40-million Social Security beneficiaries and 130 million workers.

One decision the committee should not have to make is how to accommodate Social Security administrative expenses within the cap on domestic discretionary spending. Both benefits and administrative expenses are paid for out of the Social Security trust funds. Many of your colleagues in both the House and the Senate, agree that the intent of last year's budget law was to remove not only Social Security benefits from the budget, but administrative expenses as well.

We would urge Congress to appropriate at least as much money as the administration has requested for Social Security administrative expenses, which is even less than Commissioner King originally requested. Since 1985, the administration has made excessive cuts in both staff and resources. SSA has had to make up for those cuts.

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