Interagency Disability Conference

Good morning. It is a pleasure to be here.

The scheduling worked out almost perfectly. Many of you know that we will be having the semi-annual conference for the worldwide Church of Latter-day Saints this weekend. It is one of the things I really look forward to. It is really a wonderful coming together of our entire fellowship and very inspiring.

And, you know, in my line of work, where we seem to deal only with weighty and complicated national problems, it is a breath of fresh air to be reminded that there is still a lot of goodness to be found in our churches -- certainly in the LDS Church, but in others as well.

Like deTocqueville said, the goodness of America can be found in our churches.

Of course, there are times when good communication may be missing. I couldn't help but chuckle at some of these lines taken from church bulletins.

"For those of you with children and don't know it, we have a nursery downstairs."

"This being Easter Sunday, we will ask Mrs. Lewis to come forward and lay an egg on the alter."

"At the evening service tonight, the sermon topic will be 'what is Hell?' Come early and listen to our choir practice."

"Don't let worry kill you -- let the church help."

"Thursday night is the potluck supper. Prayer and medication will follow."

"The ladies of the church have cast off clothing of every kind and they may be seen in the church basement Friday."

I note that the topic for today's conference is "Meeting the Needs of Individuals with Under-recognized Disabilities: Today, Tomorrow, and in the 21st Century." That is clearly an important topic for a gathering of great minds like this one, and I would like to pay tribute to Dr. Marvin Fifield for putting this conference together.

Marv, as most of you know, does yeoman's work not only here at Utah State's Center for People with Disabilities, which includes pioneering Utah's cutting edge work in assistive technology, but he has been a great influence on me in the area of disability policy. He actually took some time from his sabbatical to serve on my staff, which was a great help to me, but I hope you will not hold it against Marv.

But, you should also know, if you don't already, that Marv has served for years as chairman -- without pay -- of my Utah Disability Policy Advisory Committee.

I appreciate the donation of time and expertise from all the members of the advisory committee. I have relied heavily on this committee over the years and am grateful for their willingness to serve in this way.

But, Marv has cheerfully borne the burden of setting an agenda, producing the minutes, finding meeting space, and all the rest. So, Marv, if anything is under-recognized around here, maybe it's you! Thanks so much. Would you join me in a round of applause for Marv Fifield?

The Utah Disability Advisory Committee is, I believe, indicative of one of Utah's best characteristics: communication and cooperation. So many people talk about the virtues of discussion and consensus building, but few actually do it.

Coordination is even a requirement in most federal legislation. Yet, while many states make the effort, few are able to say that their mechanisms are as effective as Utah's. I would suggest that success in a collaborative process has as much to do with the positive attitudes of the participants as it does with the procedure itself.

Your attendance at today's conference is another example of Utah's commitment to communication and cooperation. I am not sure when I have seen a longer list of disability organizations, support groups, service agencies, and consumers in one convention. This forum can yield an impressive exchange of ideas -- and perhaps even a synergy -- Steve Kukic's favorite word -- that produces solutions.

We need your ideas and solutions because, quite frankly, we have not solved all of the problems yet.

Despite our investments in research and technology and the improvements we have made in services, the number of people with disabilities is growing.

The Census Bureau estimates that there are 59 million Americans with disabilities in our country. When you consider the number of family members, friends, employers, and others who are touched by individuals with disabilities, the it is clear that disability policy and programs concerns a significant segment of our population.

Perhaps the saddest fact is that an increasing number of disabilities are the result of self- or society-induced behavior such as substance abuse or violence.

As chairman of the Judiciary Committee, I have long been concerned about the effect of drugs in our society. And, these effects go well beyond the crime associated with those who deal drugs and those who commit crime to support an expensive habit -- as if that wasn't bad enough. Medical science has alerted us to adverse effects of marijuana, for example, on the nervous system, memory, and other body systems.

And, at large metropolitan hospitals, more children are seen with disabilities attributable to family violence than to birth defects. Many spinal chord injuries have been caused by drunk drivers and gun shot wounds.

There is no question that we must continue to fight the underlying causes of these disabilities. We must fight the war on drugs like we mean it. We must not tolerate irresponsibility behind the wheel of a car. We must do as much as we can to protect women and children from domestic violence; and, we cannot allow criminals to turn our streets and communities into their private playgrounds.

But, we must also face the reality that one irrevocable consequence of such behaviors is an increase in disabilities.

But, Marv, I am going to take a little liberty with the topic. I would like to talk today about Under-Recognized Abilities.

I applaud the aspect of the political correctness movement that has made us more sensitive to the fact that those with various disabilities are not unable to work, to have families, to enjoy going to the movies, to do the grocery shopping, or to participate in hundreds of activities that many of us today take for granted.

While there are still obvious demonstrations of discrimination and still examples of misunderstanding and ignorance, I believe that, on the whole, America is realizing that individuals with disabilities can be -- and are -- full participants in our society.

I was interested in the character portrayed by actress Marlee Matlin in the acclaimed TV show "Picket Fences." Ms. Matlin, who is deaf, did a comedic turn as a thief who became town mayor. What I find significant about this is that deafness was not central to her character or to the plot. The role could have been played as easily by a hearing actor. But Ms. Matlin's presence on TV in a part where hearing impairment didn't matter helped to plant the subtle message into the American consciousness that disabilities are not disabling.

I am well aware that there are many unmet needs for persons with disabilities. I know we have got to address issues ranging from Medicaid and SSI coverage to the reauthorizations of IDEA and the Vocational Rehabilitation Act. There's a lot to be done. And, frankly, we have got to be more creative as we go about doing it given our budget constraints.

I'm counting on your help to do this.

But, this morning, I would like to take a little trip down memory lane. It may put some of these needs in perspective. I think it is high time that we started out one of these conferences by patting ourselves on the back for all that we have achieved so far - in policy, in good program stewardship, and in hard work by clients.

I couldn't help but notice Jan Ferre's introduction to the annual report for the Governor's Council for People with Disabilities.

Jan reminded us about Martha Hughes Cannon's 1897 legislation to provide for the education of "deaf, dumb, and blind" children. Of course, these terms are no longer "politically correct," but the foresight of Martha Hughes Cannon and the Utah legislature is extraordinary. It is proof of Utah's longstanding leadership in caring for those with disabilities.

Some of us who do not do battle with a disability every day may find it hard to imagine what overcoming a disability may be like. President Clinton remarked just a few days ago that his effort to maneuver in a wheelchair and then on crutches gave him a greater understanding of what it is like for individuals who face a physical disability day in and day out.

I had a taste of that myself some years ago when I severed by Achilles tendon playing basketball with my son Jess.

But, though it always helpful to walk a mile in another man's moccasins, it is important not to stretch empathy into sympathy. The strong, the sighted, and the healthy should never permit concern to degenerate into pity because -- as we well know -- people with disabilities are not helpless and pity should be saved for those who are.

The disability community has continually emphasized the important point that disabled does not mean unable and that, in most cases, what is needed is support, not income maintenance. To all of you out there who have wondered whether you were getting through, let me assure you: I get it.

I have learned that the viewpoint of Vince Silas, owner of Capitol Gifts here in Salt Lake, who has been blind since infancy, is fairly typical. He attended the Utah School for the Blind. He says, "There I learned about the things I can do and worked on that rather than worrying about the things I can't do. Through family and school, I learned to be independent and learned to do things on my own. If I don't know how to do it, I find out how." Vince Silas went on to get a degree at Weber State and now runs a thriving business.

The system that has evolved over the years to lift those who must confront a disability has involved the federal government, state governments and school systems, and private efforts.

The federal government has contributed programs for disabled veterans, the Rehabilitation Act of 1954, the Individuals with Disabilities Education Act, the Developmental Disabilities Act, the Protection and Advocacy for Institutionalized Persons Act, sheltered workshops, supported employment, and, of course, the Americans with Disabilities Act -- to name a few of the significant federal efforts.

State governments have been active partners in administering these programs and have often augmented them with their own.

In Utah, the Governor's Council has, since 1971, funded a variety of innovative approaches to alleviating the barriers faced by people with disabilities, particularly in the area of independent living.

And, private community-based organizations provide a vast network for services and support.

Physical Disabilities

We have come a long way in our treatment and attitude toward individuals with physical disabilities. The blind are no longer consigned to selling pencils from a tin cup. Amputees are no longer institutionalized or homebound. FDR's paralysis would no longer be America's best kept secret.

Today, we have had a recent President of the United States who wore hearing aids (Reagan); we have had a presidential candidate whose right arm was completely disabled (Dole); we have two United States Senators who have lost limbs (Kerrey, Cleland).

The prosecutor in the Oklahoma bombing trial, Jim Hartzler, was seen driving his motorized scooter into the Denver courthouse. There was a time when the question might have been whether someone with a disability would be up to such a high stress task.

Judge David Tatel of the D.C. Circuit Court of Appeals is blind.

People with disabilities are working their way into the mainstream of American life, thanks in large part to the ADA and to the public success of people like Max Cleland and Marlee Matlin. This is something we can be proud of.

According to the Rehabilitation Services Administration, more than 200,000 Americans with disabilities enter or return to the labor force each year. Some are self-employed. And, 77 percent report that their income is their primary source of support. They are no longer dependent on family or welfare.

The Utah Office of Rehabilitation reported in 1995 that, after completing a rehab program, participants had an aggregate 616 percent increase in weekly earnings as well as a 616 percent increase in taxes paid.

Of course, you know the federal government is always interested in that "taxes paid" statistic. But, in this case, we can take it as a sign of success. In fact, the Utah Rehab Office notes that the investment in services for people with disabilities is paid back in 2.7 years in savings from public assistance and increased tax revenues.

Naturally, gains like these do not just happen -- Utahns with disabilities are able to receive a range of services and assistance that will enable them to compete in the labor market.

The Division of Services for the Blind and Visually Impaired provided rehabilitation services for 444 people; training and adjustment services were provided for over 1400; and low vision services were provided to 1200 more.

The Division of Services for the Deaf and Hearing Impaired provided technical assistance and telecommunications services for 714 deaf and hearing impaired Utahns. Sign language classes were attended by almost 200 people. Interpretive services were provided to 452 people.

These are just a few of the rehabilitation services provided to assist people with disabilities.

Developmental Disabilities

It wasn't very long ago that anyone with any degree of mental retardation was packed off to an institution and, to the anguish of loved ones, never seen or spoken of again in polite company. Today, individuals with developmental disabilities, with the help of programs like IDEA and the Developmental Disabilities, or DD Act, are learning and earning.

Perhaps the most famous example is actor Chris Burke.

But, also take the example of Steven Schreyer, winner of the 1996 Bill Sackter Award from the Arc of Utah: Steve, who at six years-old lived at Utah's Developmental Center, is now 39 years-old and living independently. He shares a house with two roommates and has a good job with the Salt Lake Car for Hire Company. He is able to visit regularly with his family and do many other things that everyone else does. Steve has a higher quality of life and a more promising future because of the training and support programs provided here in Utah.

Jon Olson has been a student of Enable Industries in Ogden. Through the job preparation and coaching provided by Enable, Jon has been working at Albertson's Food and Drug in Layton for four years, and he was recently named "Employee of the Month."

The Individuals with Disabilities Education Act (IDEA) has provided assistance for school districts to educate children with disabilities, and its success stories would surely fill a book.

But, the story of IDEA is a bad news - good news story.

The bad news is that the annual report submitted to Congress by the Office of Special Eucation noted that, during the 1994-95 school year, there were 130,000 more children eligible than during the previous year. And, the federal government has yet to keep its promise for sharing 40 percent of the costs. That broken promise has led to obvious difficulties in program implementation, not only in making the transition to the educational paradigm of inclusion, but also in terms of meeting the mandate to serve all eligible children.

School districts have been waiting since 1974 for this 40 percent to materialize. Unfortunately, I cannot be encouraging that we will ever be able to appropriate this amount of money. We are spending only about 7 percent now, or $3.2 billion.

But, the good news is that some of this increase in the number of eligible children can be attributed to better identification of disabilities among preschoolers. Early intervention can be important in addressing various learning disabilities.

Moreover, more children -- 43 percent according to the Education Department -- are being integrated into regular classrooms for at least 80 percent of the day. This is up from 32 percent during 1989-90. Classrooms for these children are a microcosm of the world they will have to live in after school. And, it is a place where children without disabilities can learn to accept as friends and classmates those who are different.

Is inclusion a suitable strategy for every child? No. But, the basis for IDEA is an individualized education plan, which provides for appropriate education in appropriate settings.

Mental Illness

And, what about mental illness? People differ about whether many mental disorders should even be construed as a disability now days because new pharmaceuticals have helped control the effects of various mental illnesses. Taking prozac for depression or clozaril for schizophrenia is hardly a big deal anymore. It has become much like taking medication for high blood pressure.

But, we cannot forget mental illness. The National Institute for Mental Health estimated that, in 1990, the economic impact of all mental illnesses in our country was $148 billion, and direct treatment costs were more than 10 percent of total health care expenditures.

And, we are grateful for the strides being made in mental health research. The NIMH, for example, has made progress in identifying a subset of childhood-onset obsessive-compulsive disorder and Tourette's syndrome. A trial is now underway that could lead the way to an effective treatment for children who have this variety of OCD and Tourette's.

Conclusion

Yes, we have much to do. We must continue to support worthwhile research in assistive technology, developmental education, mental illness, and other areas.

We must continue to provide appropriate services to citizens with disabilities who, with training, coaching, or technology, can be independent.

And, of course, we must do these things as cost effectively as possible.

We must continually search for ways to stretch available resources and leverage public funds with private resources. And, it stands to reason that we must continue to strive for cooperation and coordination.

As I began my speech, I said that Utah was unique in its ability to bring people together and to solve problems. Given sufficient flexibility to act, I know there is no barrier -- financial, bureaucratic, or systemic -- that Utahns cannot figure out a way over, under, or around.

And, Utahns know that the most effective and long-lasting coalitions are those that begin with a positive attitude and a willingness to compromise. Compromise is nourishment for achievement. Without reasonable compromises, nothing gets done.

I once sat in a meeting with senators and representatives arguing over what percentage of an authorization should be devoted to a specific task. The bill was teetering on the edge of death because of unwillingness of either side to compromise on the number. Finally, I couldn't stand it anymore and suggested that any percent of an authorization in a bill that does not pass is zero, and that would hardly be a victory for either side.

While I have a long history of standing my ground when key principles are involved, I believe there are times and places for compromises. We all need to work together to find them. And I mean all of us, both in and out of government.

Often compromises cannot be reached -- and progress cannot be made -- because members of Congress feat that outside interest groups will hold it against them if they give an inch from the preferred position. If we can't solve this problem, our nation's ability to address the myriad of problems that lie before us is severely damaged. Because on any given issue in America there are at least two sides, each with its set of supporters.

I have always counted on the clear thinking and common sense of the disability community in Utah to lead the way -- and you have never let me down. Even after leaving the Labor and Human Resources Committee, I have taken pride in submitting to my Senate colleagues the ideas you have proposed. And, these ideas have been welcomed.

I look forward to learning about the results of this meeting of great minds here in Utah. I am confident that much good will come from it.

And, finally, do not leave here today thinking only that the glass is half empty. You each owe yourselves and your staffs and your organizations a little self-congratulations for all you have already done to improve opportunities for people with disabilities.

We have come a long way from "an act providing for the compulsory education of deaf, dumb, and blind children." Think about how we finally recognized the abilities of people with disabilities and about the accomplishments of people like Vince Silas, Steve Schreyer, and Jon Olson.

And, think about the unfailing commitment of everyone in this room today to tackle the problems we still face. You here today are the best team in America in the fight against the real afflictions from disabilities: dependence and despair. You have never given in to them, nor have you permitted clients to give in to them.

To paraphrase The Reverend Jesse Jackson, you have to believe it to achieve it. I am proud to be a player on this Utah team.