As Assistant Secretary of the U.S. Department of Education since 1993, Judith Heumann has had, as her responsibility, special education and rehabilitative services. She and her staff manage the Department's Office of Special Education Programs, the Rehabilitation Services Administration and the National Institute on Disability and Rehabilitation Research. The combined budget for the task is more than $8.1 billion, with a general impact on the nation's 54 million disabled citizens, including nearly six million children with disabilities across the United States. Heumann, a cofounder of the World Institute on Disability (WID) -- the first research center devoted to disability issues -- developed polio at the age of 18 months. Her parents fought for, and eventually won, the right for their daughter to be educated in the New York City public school system. Later, she was the first person with a disability to be allowed to teach in that same educational system, but only after she sued for that right.

In the following dialogue with Michael J. Bandler, Heumann reflects on her responsibilities, on the evolution of the Department's role regarding people with disabilities, and on her personal history.

Q: The fact that the Department of Education has a sector devoted to your areas of responsibility says something about the degree to which U.S. society has embraced this issue. Detail the scope of that mandate.

Heumann: Our office was created in the late 1970s. Our three program areas -- special education, rehabilitative services, and disability and rehabilitation research -- really have responsibility over issues affecting children through senior citizens. In education for young children, we have responsibility over the Individuals with Disabilities Education Act (IDEA). This is a federal-state partnership, meaning that states who agree to accept federal [U.S. Government] dollars also agree to comply with the statute. I would boil down the major provisions of IDEA as follows: It assures that kids with disabilities are getting into school, are receiving appropriate placements, are being taught by qualified people, are being taught the standard curricula with accommodations where appropriate, and are staying in school. It also assures that they are being given high expectations, and advised that their job is to study and complete school and move into higher education or into the world of work. IDEA is a unique law. Not only does it assure that children have a right to a free appropriate education, but it also provides parents with protections that I think are pretty uncommon in the world. So if a parent believes that his or her child is not receiving appropriate services, there are very specific requirements as to the states' obligations to assure the parents as to avenues to pursue.

Q: You have spoken about "shared responsibility" with regard to education. That's what you're referring to here, I presume.

Heumann: Well, I think it's important for all children -- whether they have disabilities or not -- to know that the teacher's job is to make sure they're getting quality instruction, and the students' job is to make sure they're doing everything they can to study hard and to learn. Beyond that, you're right. Parents of children with disabilities, for many years, have seen it as a shared responsibility. They're a part of determining whether the child will be evaluated. And if the child is found to need special education and related services, then the parents are equal partners at the table -- looking at what kinds of services the child should get, where the child should receive those services, and what the goals and expectations for the child should be.

Q: I gather that this legislation, like most, evolves over time, and continues to be refined.

Heumann: Yes. The basic thrust of the law is the same. But we continue to fine-tune it. The reauthorization in 1997 emphasized the issues of teaching, learning and results. This means making sure the child's parents receive report cards to the same degree that parents of non-disabled children receive them, that the kids are participating in state or local assessments with appropriate accommodations, and that they're being taught the same curricula with accommodations. Also, there's a much stronger emphasis on professional development both for general as well as special education teachers, because there's a higher probability these days that disabled children will be in regular classrooms for all or part of the school day.

Q: Since you cite that probability, I was struck by the existence of the Individualized Educational Plan (IEP) within IDEA, which would seem to conflict somewhat with the likelihood that kids of all types will be together for most of the school day. What is the thrust of the plan?

Heumann: The IEP is a document intended to help assure that every relevant person -- the parent, the regular education teacher, maybe a speech therapist, a physical therapist, an occupational therapist, a rehabilitation counselor -- clearly understands what the goals and expectations are for the individual child, that you're developing a plan to make sure that the child and his or her teachers are going to be able to achieve those goals. It's the time when you sit down and say, `This is the way that Johnny's disability has an impact on his learning. Let's look at the fact that he's going to take algebra next year. What kinds of accommodation is he going to need for that?' You put that into the IEP. If a student has a learning disability and needs extended test time, or needs material in large print, or needs to be situated in a certain part of the classroom, each of these would be in the IEP. The reality is that the IEP shouldn't be something special for disabled kids -- it's the type of document that good schools are developing for all their children. The documents being developed for non-disabled children in some of the schools may not be as formal as the IEP process, but better schools are recognizing that it's important to have discussions with families, and to look six months or a year down the road at what the expectations are, and what role everybody has to play in helping that happen.

Q: Let's go back briefly to your other areas of responsibility.

Heumann: We are responsible, too, for rehabilitation services, through another federal-state partnership. Here Washington provides about 78 percent of the funds. Under IDEA, we provide only nine percent of the funds. Under the Rehabilitation Act, we give money to states enabling them to provide services to working-age individuals. The purpose is to serve people who have more significant disabilities and needs, yet who are interested in going to work. We help them look at the marketplace, determine what their interests are, identify the areas of study or training they may need. Then we assist them in entering the job market by teaching them, for instance, how to write a resume or to conduct themselves when being interviewed. In many cases, rehabilitation counselors will also contact employers to make them aware of the pool of people with disabilities who are interested in working, and the kinds of qualifications these individuals have.

Q: One of the things that comes along with regulations is the question of monitoring and enforcement. How is that accountability incorporated?

Heumann: That's been a part of both the special education law and the Rehabilitation Act for at least the last 30 years. What it basically means is that we provide, in both areas, funding for states to do things like professional development. We expect states to develop plans that look at their competencies -- what are they doing right, what are they expected to do, where are they falling short and how they can improve. We will then monitor the states. In the case of special education, if a state is having a lot of problems, we enter into corrective action plans, provide technical assistance, and revisit the jurisdiction every year. Where states are still not doing what they need to do, other actions can be taken against them. Some states are doing a good job, and others have significant problems that haven't improved over the years. These are the ones we're focusing more of our attention on, while giving recognition to those states that are doing a good job. In the area of rehabilitation services, money goes to the states, which have offices in different locations. Our office monitors those offices and talks to individuals who have been served. Monitoring is very important, not because we're interested in being punitive, but because our customers -- children with disabilities and their families -- should know that when we're giving out billions of dollars, accountability counts.

Q: You've served in various de facto roles in other countries, representing the United States. You've also interacted with people overseas through the World Institute on Disability. What are your impressions of the global interest in, and involvement with, people with disabilities?

Heumann: In this office, we've focused a lot on the international picture. One of our goals in this Administration has been to get disability integrated more effectively into the agendas of the United States Government foreign affairs establishment -- the U.S. Information Agency, the Agency for International Development, and the Department of State. My experience working with WID -- where a major focus was working with individuals with disabilities in other countries on issues such as civil rights, housing, transportation, independent living, education -- was that we excelled in the United States in certain areas. Civil rights protection was an example. But we fell far short in certain other areas, like health care. Comparing us to Western countries, subsidizing disabled individuals who have lower incomes in the area of housing, personal assistance services -- where someone will be able to assist families with a significantly disabled child or adult in duties like bathing and cooking and shopping and cleaning and driving -- we are far behind many in that area. So WID was looking at a number of areas, personal assistance services being one of them. That was very beneficial. Now, in this job, I am helping to arouse the United States Government to see that, for example, if we're working in other countries on education issues, the education with which we're helping them models more of what we have. For example, they need to ensure that disabled children are going to school and being included or integrated more often than not, and that there's an expansion in special development training for teachers. We've had a relationship with Mexico, for instance, that has developed government-to-government because of the bilateral agreement between the U.S. Department of Education and the Mexican Department of Education. We sent down a group of our grantees and staff who are knowledgeable on inclusion issues; they sent principals, teachers, and parents from a number of different schools here to discuss issues and concerns involving integrating children with disabilities in schools, and the training that needs to occur in order to facilitate that integration.

Q: Would you consider some of these initiatives tests for what might evolve bilaterally or multilaterally with other countries?

Heumann: Yes. There's an interest on the part of many countries -- particularly people with disabilities and concerned staffs and professionals -- to do more with the United States in a more formal way. In mid-1997, the United States sponsored its first international women's conference on disabilities, with 632 women from 82 countries. Twenty-two U.S. Government agencies supported it. It followed the platform of action developed as a result of the 1995 United Nations Beijing Conference on Women. Over the next two years, there will be four follow-up conferences in the United States and four in other regions -- in Mexico, Africa, Asia and Eastern Europe.

Q: I realize that much of this stems from the Beijing Conference. Still, I have to ask you the obvious -- whether actions and progress involving girls and women apply equally to boys and men.

Heumann: It's a very important point. If the U.S. policy on education focuses on education for all, our goal is just that. We would want assurances, when we give money to other countries, that they will serve disabled boys and girls, men and women.

Q: So you're using the framework of these conferences...

Heumann: ...to help advance an agenda across the board.

Q: Let me close with a reflection on your personal history. Your mother, who passed away recently, was one of the early fighters in the struggle for civil rights for people with disabilities. Your parents couldn't even get you into a regular public school until the fourth grade. So your work today all emerges from that heritage, that legacy. Compare, if you will, the landscape of today with the world in which you grew up.

Heumann: I think, basically, that we have many pieces of legislation which have been changing the landscape literally. And while you can't change people's attitudes legislatively, I think the changing of the landscape has really helped begin to change people's views of those of us with disabilities. We've moved from being seen as something inanimate to being people out in the community, with whom citizens with no disabilities engage directly or indirectly more than they ever did before. So I think that is slowly helping to dispel myths that existed about who we were as disabled people. I also think we have a much more articulate group of disabled individuals who have decided for themselves that they are not going to accept a life of second-class citizenship in this country. That's resulted in these pieces of legislation which are helping move the society forward. The society didn't create what it needed to on its own; it needed that strong legislative push.

My parents were not really typical; they were and are the parents of today, who basically make a decision that they're living at home with their kid with a disability. They didn't expect the child to have a disability. They've had to be dealing with what their expectations were and trying to hold on to having similar expectations. And the system around them then, and still today, too often continues to put out messages which say, `you need to lower your expectations of what you believe your child can do.' And so, I think, we've seen more organization of parents, just like we've seen more organization of adults with disabilities. And that, in and of itself, has been helpful. Also, younger parents of non-disabled children are being more exposed both to people with disabilities that they knew when they were growing up, and to kids with disabilities in their own children's classrooms -- as well as in the workplace. It's really like questions of race and gender: the more you're willing to interact on a person-to-person level, the more you recognize that we're all individuals, and the labels -- whether religious, or racial, or gender-based, or dealing with disabilities -- are really no more than labels. You need to figure out who we are individually.

Q: It would have been easier for your parents today, obviously.

Heumann: Well, my parents were trailblazers in many respects. They had a belief. Nobody around them necessarily agreed with it, but they just went forward.