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STATEMENT OF SANDRA FREED THOMAS
Mr. Chairman and Members of the Subcommittee, thank you for the opportunity to appear before you today to discuss the needs of children suffering from attention deficit disorder, also known as attention deficit hyperactivity disorder (hereinafter "ADD"). My name is Sandy Thomas and I am President of Children with Attention Deficit Disorder ("CH.A.D.D."), a national ADD parent support organization with more than 200 chapters throughout the country. With me today are Julie Doy of Cedar Rapids, Iowa and Mary Fowler of Fair Haven, New Jersey. We are parents of children who have ADD. We represent thousands of parents like us, who need your help so that we can give our children the appropriate education they deserve and allow them to grow up to be productive, contributing adults.
I live in Greenfield, Massachusetts and was a constituent of Congressman Silvio Conte's. Let me take a moment to say that we are all deeply saddened by the passing of Congressman Conte. The passion and commitment he showed us as he championed our children's needs helped to bring our issues to the national forefront. He rigorously encouraged us to speak up for what we know is right and fair. Mr. Chairman, I am honored to testify today before you; a leading advocate for the rights of all disabled people.
CH.A.D.D. deeply appreciates your dedication and that of your staff in securing the ADD Resource Centers and the Department of Education's ADD Notice of Inquiry in last Congress' Education of the Handicapped Act Amendments of 1990. We are pleased to announce that well over 2,000 comments were receive in response to the Notice of Inquiry. An overwhelming majority of those comments favored providing ADD children with educational services designed specifically to address ADD and urged that educators and the general public be better informed about the nature of ADD.
Briefly, ADD is a chronic neurological condition which is estimated to affect 3-5% of our school-age population; approximately 2 million children and adolescents. Research suggests approximately 50% of ADD children grow up to become ADD adults. ADD is characterized by an under-developed attentional capacity, impulsivity, and often, but not always, hyperactivity. These traits can readily be seen in an ADD child on a daily basis. In school, these children can be extremely restless and eas distracted. They have trouble completing work in class, often miss valuable information because of their under-developed attentional capacity, call out of turn, and often find themselves in trouble for their behavior. ADD affects children in all areas of their lives at home, in school, and with peers. Given the characteristics and nature of ADD, one can readily understand that ADD interferes significantly with major life activities such as learning and social adjustment.
Effective management of ADD requires a multimodal approach. This includes strategies and interventions from the educational, medical and psychological fields. For the most part, parents are able to provide the medical and psychological components of their child's program. In the 1987 Learning Disabilities: A Report to the U.S. Congress, in the section on ADD, the authors concluded, "educational management is an important priority and often forms the cornerstone of all other therapies However, even the most resourceful parents often are not able to arrange for effective school interventions, which can leave a gaping hole in the child's total management. There are many reasons for this, including the fact that there is no widespread, equitable training for regular or special education teachers about ADD. Right now, the burden of "educating the educators" falls too often on the shoulders of the parent with the ADD child. Parent support groups are providing in-service education programs to schools and colleges across the country.
ADD, when left untreated, can lead to serious problems which are expensive to society. Recent studies show us that when ADD students do not get the help they need, the results include greater frequency of grade retention, drop-out, and lives of unfulfilled potential. Some of our untreated ADD citizens develop the need for drug and alcohol rehabilitation programs, at a great cost to society and, ultimately, to themselves. As parents, we believe with our hearts and souls that we need to turn those negative outcomes around while the windows of opportunity exist. When our children are young, we have to get them firmly directed on the right course, otherwise, they run the risk of developing a set of secondary problems that lead to major life difficulties with interpersonal relationships and jobs.
What is happening today with our ADD children? I speak with parents every day who tell me about their bright, curious, energetic children; children who are being continually discouraged in school; failing, being grade-retained, expelled, and sometimes dropping out in frustration. A great deal of this frustration occurs because ADD children typically are not properly served nor recognized as having special needs. The lack of proper service or recognition is largely a result of the legal and regulatory confusion and ambiguity regarding ADD that exists in the educational community today. We are optimistic over current efforts within Congress and the Department of Education to clarify and resolve this confusion and ambiguity.
These efforts must succeed because we know that when children with ADD are properly channeled, their creative and original way of thinking can bring about phenomenal, groundbreaking productivity of which we all can be proud. When their potential is wasted, it leaves our country poorer. America has always been enriched by acknowledging, respecting and addressing differences among peoples. We can no longer afford to lose the brilliance and diversity these ADD children offer us.
Like other disabling conditions, ADD occurs on a continuum, from mild to severe. The degree to which a child is impaired or disabled by ADD depends upon the nature or severity of his or her condition. For the child who is mildly affected by ADD, there are minor modifications which be made in the regular classroom. Examples include arranging seating preferentially, allowing extra time on tests, simplifying complex directions, avoiding a series of multiple commands, maintaining eye contact during verbal instructions, and many others. All of these are basic teaching tools which reflect good adaptive teaching methodologies.
For the ADD student who is severely impaired in school by the symptoms of this disability, more specialized instruction must be made available. Examples of specialized instruction and related services needed would include: modifications in curriculum to adapt to the attentional deficits of the child, cognitive-behavioral programs to enhance learning strategies and decrease disorganized and impulsive responding, attention-training programs, organizational skill training programs, social skill training and behavior-modification programs incorporated within the child's school program. All these programs have proven effective for children with ADD.
Parents take very seriously the responsibility of raising their children who suffer from ADD. We love our children and want to do what is best for them. Many of us have educated ourselves by reading research reports, attending lectures and conferences to understand current concepts, and by holding support meetings to which we invite those professionals from our communities who are knowledgeable about ADD, to help us learn about this chronic disorder. In addition, we live with an ADD child every day and we share what works from qur own experience, and what does not.
We are comforted by the burgeoning body of knowledge that has established ADD as a neurologically based disorder. However, all too often, ADD children and their parents are blamed for the symptoms of this disorder. It is unacceptable to condemn parents or to berate or punish their children for a neurological condition beyond the child's control. The child is often misperceived as willfully disobedient and uncooperative by teachers who do not understand the neurological basis of the child's difficulties. We know that most ADD children flourish when properly managed and educated by informed teachers, but right now, parents are wholly dependent, from year to year, on the ADD-awareness of their child's teacher. This is a dangerously haphazard way to educate a child with special needs. The pain of watching your bright child being misunderstood and failing, year after year, takes its toll.
Just days before his death, Congressman Conte wrote a letter to the Department of Education asking it to reaffirm its commitment to providing children with ADD the free appropriate public education they deserve. Assistant Secretary Dr. Robert Davila responded to Congressman Conte's letter on March 20, 1991. He recognized the need to disseminate the existing body of information regarding ADD to school personnel and parents and to provide in-service training for classroom teachers and principals about ADD. We applaud the Department of Education's intent to disseminate information about ADD and provide in-service training for education personnel. We look forward to working with Secretary Alexander in a cooperative effort. Additionally, we appreciate the integrity and intent of the Individuals with Disabilities Education Act ("IDEA") as an evolutionary process and trust it will remain a foundation for fairness in American public education.
Mr. Chairman, as a parent, I have to know that I have done everything I can, so that I can look my son in the eye. We can do a lot as loving and committed families, but we need your help. Here is what our children need:
(1) Widespread dissemination of information on how to recognize and effectively educate children who have ADD. ADD information needs to go to parents, doctors, nurses, teachers, school administrators, and others who are involved with ADD children. This process was started last year when Congress, under your leadership Mr. Chairman, appropriated money to establish ADD Centers for this purpose. The Department of Education is in the process of procuring these centers. We ask that Congress at least match last year's appropriation earmarked for the ongoing work of the ADD Centers in organizing, synthesizing, and disseminating current knowledge about ADD.
(2) ADD training for current and future educators about ADD. In-service training for teachers and administrators is urgently needed and desired by educators. The need for today's educators to learn how to effectively recognize and intervene with ADD children was made evident by the responses of teachers and parents alike in the recently completed Notice of Inquiry. Furthermore, ADD has essentially been neglected in our institutions of higher education. University degree programs for regular and special education teachers, counselors, and administrators need ADD-curricular components. We ask that Congress consider earmarking funds for ADD training programs within the Department of Education's existing budgets for in-service training and university regular and special education program grants.
(3) Support for ongoing neurobiological research. ADD has been studied for many decades and we now know that it is a distinct disorder. This was highlighted in a report that principal investigator, Alan Zametkin, M.D., published in the New England Journal of Medicine on November 15, 1990. Dr. Zametkin works for the Alcohol, Drug Abuse, and Mental Health Administration ("ADAMHA") in the Section on Clinical Brain Imaging at the National Institute of Mental Health ("NIMH"). As a result of Dr. Zametkin's research we now have an internal picture of what ADD looks like. (See attachment). Dr. Zametkin told me that he could have had the dramatic results of his studies two years ago with more staff. We believe it is important to support cutting-edge research such as this.
Mr. Chairman and Members of the Subcommittee, thank you again for allowing us to be here today to discuss the needs of our children. Funds appropriated to help our children who suffer from ADD will be money wisely invested. It is neither trite nor trivial to proclaim that these children are a significant part of our future and our promise. Without proper help, many of them will add to America's burden. Therefore, we respectfully urge you to invest in them now. Filling the gaps, cracks, and craters that exist for ADD children will take tenacity and commitment from us all.
Senator HARKIN. Thank you very much. And I join with you in expressing our sympathy to the family and friends, the many friends of Silvio Conte. I am going to miss working with him on the House side. He was a great champion of biomedical research and all of its aspects.
As you pointed out, we did put in $750,000 for the centers. The comment period ended recently on the definition of the term. And evidently, my staff tells me, Bobby tells me that over 2,000 comments have been received. So I assume that we will be moving ahead with that definition very shortly.
You are asking for an additional $1 million for dissemination purposes and for additional centers?
Ms. THOMAS. For centers that are funded right now. They are to be procured yet. They have not started up, yet, so we cannot comment on that.
Senator HARKIN. They have not started up yet. Are you asking for additional ones? You are asking for an additional $1 million for
Ms. THOMAS. For ongoing work for the centers for next year.
Senator HARKIN. I see. Well, that is certainly a modest amount to meet a need out there. Again, we have to really move ahead with the definition and with other research into this area. And, of course, getting the information out so that it can be properly diagnosed.
Ms. THOMAS. That is right. It would sure help these kids and help us as families to help us to continue to support them. But we do need your help. Obviously we cannot do this alone. And we sure do appreciate your leadership in that.
Senator HARKIN. Well, thank you very much. We are going to do everything we can. I was just looking at this brochure you put out. Thank you very much. Ms. THOMAS. Thank you. Senator HARKIN. Is there anyone here representing the Council of Organizational Representatives?
STATEMENT OF HOWARD E. STONE, COCHAIRMAN, COUNCIL OF OR
GANIZATIONAL REPRESENTATIVES Senator HARKIN. Rocky, I am sorry, I did not know that you were representing the Council of Organizational Representatives.
Mr. STONE. Well, I am busy in other directions these days.
Mr. STONE. Quite a few, just like you. But I am just going to talk briefly about some of the highlights in here.
As you know, my name is Rocky Stone, and I am the executive director for Self-Help for Hard of Hearing People. This is an organization which is very large and growing of hard-of-hearing and deaf people who desire to remain active in the hearing world. I am here today in my capacity as cochair for the Council of Organizational Representatives, which is a coalition of 15 national and regional organizations dedicated to improving the quality of life for deaf and hard-of-hearing people.
COR provides both a forum and a coordination whereby information is shared, plans made, and actions taken for collaborative and mutually supportive efforts.
I lost most of my hearing at the age of 19. And at the age of 49, I became profoundly deaf. You know from your own personal family experience in deafness, and I know from my personal experience what a struggle it is in this society with a profound hearing loss to get an education, to succeed in a highly competitive workplace, to raise a family of four children, and to have any energy left over. Many of us do it, but the price is high for the entire family, physically, psychologically, and economically.
In my work with the Council of Organizational Representatives, I am often reminded of the work between John Foster Douglas and Adlai Stevenson on the Japanese Peace Treaty. One day after a particularly productive session, elated aids said to Foster, that was a great session, it is lunch time. Should we ask Adlai to join us for lunch. Mr. Douglas is reported as having replied, “Hell, no. I have to work with him, but I do not have to eat with him.”
The Council of Representatives is not an organization of bosom buddies, but we are learning gradually how to become an effective coalition. And in this context, the council supports the following programs: The National Institute of Deafness and Other Communication Disorders to the sum of $201 million. We are very optimistic about the direction of this new Institute. And the expectation of between 500 and 600 new applications for 1992 is a surge that no other Institute in the NIH is experiencing. It is long overdue because this kind of research is extremely important to all deaf and hard-of-hearing people. This core recommendation is necessary if NIDCD is to carry out its mission of research and training for the large and growing population of Americans with deafness and other communications disorders.
We are interested in supporting individuals with disabilities' education. Special education personnel development, we support to the tune of $103.25 million. Unless a major campaign to recruit, prepare, and retain special education, early intervention, and related services personnel, the future capability of the Nation to educate children with disabilities, including hearing impairment is seriously threatened.
We are interested also in supporting the Individuals with Disabilities Education Act, both Public Law 94-142 and Public Law 89-313. In terms of Public Law 94–142, we urge $3.996 billion this year. The Presidential request is a meager $121.9 million increase for a program that requires a dramatic catch up. In terms of the moneys appropriated so far, the burden has shifted to State and local governments at a time when school budgets are already under stress from the rapidly increasing special education costs.
We are interested also in rehabilitation services. We urge $2,500 million for rehabilitation State grants, and $50 million for rehabilitation training. We recommend $50 million for rehabilitation training in order to meet the congressional expectations, and to enhance the rehabilitation services for persons with disabilities. It is imperative that Congress provide full support of this program to meet its own expectations.
We recommend $70 million for the National Institute on Disability and Rehabilitation Research. This recommendation would enable the NIDRR to expand its educational and technical assistance effort regarding the ADA and to provide critically needed increases for the 60 research centers it funds, which have had no annual increases in their 5 year budget.
COR supports all programs designed to impact on improving the quality of life for deaf and hard-of-hearing people, including technological aids for special education, and technology-related assistance grants, which are slowly beginning to show the foresightedness of you and your committee. We thank you very much for your previous hard work on our behalf, and we appreciate the opportunity to appear before you today, .
Thank you very much.