AAMR F.Y.I.
Dr. Margaret Giannini is Director of the newly formed HHS Office on Disability announced by Secretary Tommy G. Thompson in July 2002. The Office on Disability builds on the work of President Bush’s New Freedom Initiative, a comprehensive plan to tear down barriers that prevent people with disabilities from fully participating in community life.
As the Office on Disability officially opened its doors on October 15, 2002, AAMR F.Y.I. Editor, Anna Prabhala, talked with Dr. Giannini about her vision for this new federal office.
AAMR: First, let me first congratulate you on your appointment on behalf of AAMR. We are very pleased and excited at the creation of the new HHS Office on Disability.
Dr. Giannini: Thank you. I think there are lots of people that join you in feeling the same way about the Office. They seem pleased that this office has finally been created.
AAMR: As you may have anticipated, there are many questions on the scope of the new HHS Office on Disability, and I want to start by asking you about the goals and objectives of this office. What would you like to see this office accomplish under your leadership over the next few years?
Dr. Giannini: Well, in terms of what we realistically will be able to accomplish within a period of years, I think we would seek out where all the gaps are–gaps that prevent full inclusion of persons with disabilities–and work toward reducing or removing those gaps. That way, we can begin tearing down the barriers that are so clearly outlined in the President's Freedom Initiative. You know, we've talked about this for so many years. We want the disability community to not be a separatist community, but be assimilated into the general population of society and be another contributing member of society. Just because a person has a disability, it does not mean that he or she is that different from an individual that's not disabled. It does not mean that it changes the intrinsic potential and ability of that individual. I think we have to raise the consciousness that this is true within the society at large. We also have to motivate the disabled population, make persons with disabilities aware of their own self-determination and really recognize what their great potentials are. I think they are so accustomed to being told that they can't do this or that, they think they really can't. And we have to change that.
AAMR: Your message then is, focus on the abilities of persons with disabilities.
Dr. Giannini: Absolutely.
AAMR: Dr. Giannini, you mentioned bridging gaps as the chief goal of your office. Can you comment on some of these gaps your office will address right away?
Dr. Giannini: Well, I think there are a number that come to my mind immediately in a global way. There are major gaps in transportation, healthcare, employment, education, and housing. But most importantly, I see a major gap in planning for life span transition. From birth to death, we don't really have a smooth transition for persons with disabilities. For instance, after their pediatric life cycle of 21 years, then what? The search for services starts all over again. And then from ages 21 to 35, it starts all over again. We see the same from 35 to 55 years and then between 55 to 75 years until we get into major aging. And then the disability may in many cases just worsen.
So I am trying to be the anticipator of what we can avoid, of what we can anticipate that might happen. And all the what-ifs–what if we do this, what will happen? What if we don't do this, what will happen?
AAMR: As you work towards achieving your goals, how will your new Office relate to other federal agencies and offices such as the Administration on Developmental Disabilities (ADD), the Office of Special Education and Rehabilitative Services (OSERS), the National Institute for Dissemination on Disability and Rehabilitation Research (NIDRR), and Medicaid, within DHHS and the Department of Education?
Dr. Giannini: Well, the different offices within DHHS that deal with disabilities are being looked at, and there are some ideas on what might come to this office. But nothing has been definitely decided yet. At the moment, all of the agencies within DHHS that deal with disability function very well with this office. They know that this is the helm in HHS, concerning the disability world. This is where coordination, collaboration, implementation, and hopefully influencing of policies happens. We also have to move on special initiatives and the legislative issues–in terms of at least raising the consciousness of what the legislative issues are, and work with legislation within our own department here in DHHS.
So my initiatives really cover the world in many ways. And the simplest way to put it is–any issue concerning disabled persons are the issues of the HHS Office on Disability, whether it be mental retardation, developmental disabilities, blindness, deafness, spinal injury, amputation, or disabilities caused by chronic diseases and other illnesses.
AAMR: You mention mental retardation and that's closest to AAMR, that’s what AAMR represents. How much will the Office on Disability concern itself with mental retardation and developmental disabilities?
Dr. Giannini: Well, at the moment, if issues arise within the areas of mental retardation and developmental disabilities here at HHS, it really comes out of the President's Committee on Mental Retardation. And we are in close communication in terms of where we both agree mental retardation and developmental disabilities should be in DHHS priorities and objectives. As you know, the President's Committee has a great influence on those priorities.
But we are there to enable, implement, collaborate, partner, whatever we can do in the way of getting the job done. That's our role.
AAMR: And how can associations such as AAMR assist your Office in its mission?
Dr. Giannini: Oh, I think in many ways. I think there should be open lines of communication between organizations. Having been a past President of AAMR, and having worked many years in that organization, I know that AAMR is very committed to putting forth issues and they could be very useful in brainstorming and helping us. The beginning stage will be to open lines of communication and see where that brings us. I've met with Doreen Croser (Executive Director of AAMR) and we’ve talked about this. And, of course, there have to be many more, not only with Doreen, but with other leaders at AAMR.
AAMR: Having been past president of AAMR in the 1970s, you do feel more optimistic about the progress the MR/DD field has made since then?
Dr. Giannini: Oh, yes. We've come such a long way. When you go back historically and think of the whole de-institutionalization movement, and when you consider that I was the first in the country to deal with mental retardation comprehensively, that's amazing. It's astounding! And that was only 52 years ago.
AAMR: Can you elaborate on what you mean by "first in the country to deal with MR"?
Dr. Giannini: Yes. I ran the first program in the nation (and I discovered, in the world) that dealt comprehensively with individuals with mental retardation. This developed into the first University Center of Excellence on Developmental Disabilities. Then it was called University Affiliated Program, now AUCD. So when you think about the movement that started way back then, and where we've come, it’s amazing. We have legislation now. We have money now. We have a voice now. We are able to be convincing. We can be heard. We are able to make a difference. We de-institutionalized all those big warehouses of humanity, which were horrendous. We are getting these people to work, work that they were never able to do before. We have improved our special education programs. We developed the Developmental Disabilities Act. We've had a tremendous impact and there’s more work to be done.
AAMR: We have indeed come a long way, the arena of developmental disabilities included.
Dr. Giannini: Yes. Consider this: we have developmental disabilities councils in every state. That's an amazing achievement. These councils have a lot of authority and empowerment, and they can do a lot on a state level. So that's very significant. There's also been a tremendous amount of progress in terms of Social Security Disability Insurance, Medicaid, Medicare, housing, and many of the waivers that are directed completely to disabled people. Section 8 of HUD gives special vouchers for people with disabilities so they can have affordable housing. Now, we are refining many of the issues as well as expanding upon some new areas that have not been tapped. It's a dynamic process. Nothing stands still, technology transfer and assistive technology is coming more into the fore. We must deal with high tech and low tech because it's essential, it's meaningful, and it's helpful. And we have to figure out a way to access technology easily, make it affordable, get funding for it, and make technology meaningful to the lives of individuals with disabilities. We have to place all of these in the big scheme of things, such as the economy. So there are many ripples to the stone that drops into the water, not only how we touch different initiatives, but also the different aspects of disability. One size doesn't fit all. You have to consider every disability separately.
The time is right to push many initiatives forward. The New Freedom Initiative and the Executive Order allows for accelerated development of community integrated services and methods of tearing down barriers for persons with disabilities. It's already in place. It's the law. We have to do it. In addition to that, Secretary Tommy Thompson is very committed to the entire scope of issues surrounding disabilities. So we are in excellent shape as far as having support and commitment from the top. However, this is the best time of all times because with the Executive Order of the Freedom Initiative, every federal agency has to respond to the Freedom Initiative. This means they have to participate and collaborate and they have to partner across the entire federal arena. It’s a wonderful time here in the United States.
AAMR: And I have to say, the United States in many ways sets an example for countries worldwide in terms of attention devoted to persons with disabilities and their rights.
Dr. Giannini: I have traveled abroad and I know what you are saying. We have a different kind of problem in the United States. Our problem is that in most other countries, we are talking about have homogeneous populations, whereas we in the United States have heterogeneous populations. This means that what every homogeneous country must do, we have to do it as the saying goes, "in spades," because we have to do it for diverse populations, all ethnicities, and consider cultural differences. And so our course is a little bit different and a little bit harder.
In spite of that, I think I can say without reservation–and I implemented many around the world–that we still have the best programs in the world.
AAMR: Earlier in our conversation, you mentioned assistive technology, which is in fact one of the goals highlighted in the new Freedom Initiative. We know that access is often problematic, especially with persons with cognitive disabilities. What role will the Office on Disability play in this difficult area?
Dr. Giannini: Assistive technology is one of my keen interests. And you may or may not know, there is, from the President's Initiative, an inter-agency council on technology research. And all agencies are represented on that council, of which the Office on Disability is one. And the agency that heads that council is the National Institute on Disabilities Rehabilitation Research (NIDRR) and Steve Tingus is the chair. There's a great deal of effort to not only promote, but to implement and create initiatives on assistive technology. I see a great future for the use of assistive technology.
AAMR: Dr. Giannini, before we close, is there a message you would like to give AAMR members and members of the disability community at large?
Dr. Giannini: Well, I think my message would be that it's a new day and it's a new era. It’s a new breakthrough, really, for the world of disabilities because we have so much support. We can move forward, accomplish things for disabled persons that maybe they never had the opportunity to look forward to before. I want to work in partnership with other like-minded organizations. And to get it done, we must partner. It’s the only way we are going to accomplish anything from now on. Our work cuts across many disciplines. While the impact of each discipline is different, they are still linked to each other. And we’ve got to work together to make it effective.
AAMR: That is a very positive message. Thank you very
much, Dr. Giannini.
The HHS Office on Disability is located at:
U.S. Department of Health and Human Services
200 Independence Ave., SW
Room 620E
Washington, DC 20201
Phone: 202-401-5844
Page last updated December 3, 2002 4:49 PM
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