Interview: Lex Frieden Assesses Impact of National Council on Disability

Background

The governance project looks at the effect of having people with disabilities in positions of government and what impact, if any, that has. Part of the project also looks at the various national bodies that effect disability policy, whether the entity consists of appointed members or whether it's an umbrella organization or other structure. A lot of focus will be on your thoughts about NCD as Chair and having been involved before as NCD's Executive Director and to look at the overall effect of NCD as a body.

Factors affecting effectiveness of policy bodies

Q. NCD is an appointed body where in some countries the main disability policy body is comprised of an umbrella group of disability NGOs who have various abilities to affect the policies of the country either in an advisory capacity or otherwise. What are your thoughts about the different ways that these bodies are constituted vis-à-vis their effectiveness?

A. Well, first of all, the effectiveness can depend on a number of things, and I would start with authority. If the law of the land has sanctioned, designated, or authorized a body to either set policy or advise on policy, then there's reason to believe that body is going to have some impact. I think the second consideration to make is the extent to which that body has clout. That may be a function of either its membership, its economic status, by that I mean, in membership -- either because it has a whole lot of members or very influential members. By economic status, I mean either because it's a very wealthy organization with money to spend on advertising, marketing, and lobbying or because it has a high status budget from the government. So I really think there are a number of factors that actually determine whether it's going to be more or less effective.

Q. And what do you think about NCD as a federal agency, albeit an independent one, but do you think that being a federal agency limits its scope and strengthen or do you think that NCD has more latitude to pursue its agenda?

A. Well, first of all there are some nuances that readers need to be aware of about NCD. Originally NCD was an advisory body in the Department of Education that was by law supposed to advise the President. But because it was purely an advisory body and a part of the U.S. administration, that advice never seemed to go very far, despite the fact that the members were appointed by the President.

History of NCD

Q. When was that?

A. That was 1978, in the Rehabilitation Act, the Council was set up as the Presidential Appointees to advise the President and it was located administratively in the Department of Education. So in reality, it was not very effective and by 1983 when hearings to consider the reauthorization of that body were held, people in the disability community, including myself, argued that it should not be; that it was of no value, that it should be ended. At the same time, some of us were arguing that there should be a blue ribbon panel appointed by the President to advise him on a number of these disability issues. What Congress did was to take our recommendations for both and basically put them together and made the Council an independent agency so that it had the freedom outside the administration to give advice and publish this advice. Inside the administration, its advice could be filtered at any number of levels. So, you know, simply to describe it as an advisory body in the government, I think there's whole lot of different shapes that form can take, and I think that people outside the U.S. may not realize that either.

Terms of office of Council members

Q. Can you talk a little bit about the patterns of the terms of office of the members; I mean originally when it was set up, were the terms longer, did they rotate? And what do you think has been the impact of the way that the board of NCD is constituted?

A. Well, that's very interesting. Because these are Presidential appointments, I mean the President frankly can fire somebody, and what happens when there's an election and a new President comes, and that even happens when it's the same party sometimes, the President's office will say in a polite kind of way, "Gee whiz, you've done a nice job, but wouldn't it be nice if we could have our own people there?" And sometimes when that doesn't result in a polite resignation, the President's office will say, "You're fired." And that's happened with Council members on a couple of occasions.

Q. Do they serve a fixed term?

A. The term is, and always has been, three years, and they're rotating terms and offset terms, so that not everybody changes at the same time. Originally, it was one-year, two-year, three-year terms and they have stuck with that. In the case of our Council, which was basically put together in 2001, the former Council all went out at the same time and they started over with people having one-year, two-year, three-year terms, and the law says that you can be appointed to succeed yourself to one full term. So, if someone's appointed to a two-year term, and then they get appointed to a three-year term, they can be appointed to another three-year term, and therefore serve eight years, and then the law says if you're not replaced, you can serve until you're replaced. So, I think, for example, my predecessor in the Chair, Marca Bristo served 10 years as a member of Council, simply through the nuance.

Q. Is there something in the bylaws or guidelines or whatever that says the composition of the board, because I know it's now predominately the majority party? Has that always been the case, and if so, is the sharing, if you will, between the ruling party and non-ruling party in statute somewhere?

A. The law says that the Council members must be appointed to represent a variety of considerations. It mentions in the law, parents or family members, I think, of people with disabilities; it mentions professionals working in the disability field; it mentions principally people with disabilities. I mean, I don't recall whether that's actually in the law or in the regulation, or in some of the testimony that went on with the Council when it was established. I do know that in each case, the Presidential Personnel Office looks at that history and they actually have seemed to follow the pattern all the way through of trying to find a lot of diversity. So it's not a written law that there should be people from diverse cultures on the Council, but each President has seemed to do that. The current Council has an Asian American, a Hispanic American, and so on. So, there's a lot of diversity. Additionally, they look for diversity of geographic representation, and seldom are there more than two people from the same State on the Council at any given time and usually they're scattered throughout the U.S. It's not written that there should be male and female representation, but ordinarily there's a good balance there. It's not written what disabilities must be included, but generally there's always at least one visually impaired person, one deaf person, and one or two people in wheelchairs.

In the last 12 years are so, they've been very sensitive to include a person with mental retardation or a family member of a person with mental retardation and have devoted more emphasis in finding somebody who is knowledgeable about, and representative of, the mental health/mental illness constituency. But that's generally up to the White House Personnel Office that makes recommendations to the President. The President reviews and selects from those recommendations, makes the appointment and then it's sent over to the Senate. Now, that's interesting too, because in order to have Senate confirmation, the credentials of the people who are appointed by the President have to meet a higher standard. In those situations, people get a very rigorous review from the security agency, in this case the FBI, and it's a standard above that of strictly Presidential appointees that are not necessarily Senate confirmed. So, for example, the members of our President's Committee for People with Intellectual Disabilities, are Presidential appointees but they're not confirmed by the Senate.

Implications of the budget

Q. In terms of NCD itself, what is the budget?

A. Roughly $3 million.

Q. At one point, there were other "sort of" independent agencies such as the President's Committee on Employment of People with Disabilities, and they were also sort of acting as bully pulpits, in that case taking on the goal of promoting employment for people with disabilities. Now, it seems like it's pretty much on NCD to carry the whole weight of pushing the disability agenda. Do you think that's the case, and do you think that it's putting too much on NCD and its rather small staff and rather small budget?

A. Well, it is a relatively small agency to manage the breadth of issues that pertain to disability, and because of that we're not able to comment on some very important issues, we have to focus on and pick a few at a time that we can concentrate on. I personally believe the President's Committee on Employment of People with Disabilities was an effective body. I don't know why it was dissolved but I will point out that when it was dissolved, the Congress set up another employment advisory council for some reason, and I don't really understand, I haven't tried to figure it out. But there is apparently a dormant Presidential Advisory Council on Employment?

Q. There is?

A. Absolutely. I believe that it's the same statute that moved the disability employment program to the level of Assistant Secretary.

Q. In the Department of Labor's Office of Disability Employment Policy (ODEP)?

A. Exactly. And at the same time ODEP was created I believe there was also created by the Congress this blue ribbon employment advisory committee, but whatever happened to it, I don't know.

Relationship of NCD to U.S. disability movement

Q. Talk a little bit about how NCD operates, and particularly in relationship to the disability movement in the U.S., because I think you know that in some countries the equivalent to NCD would be the umbrella group for all the disability organizations. That's not the situation with NCD, so how does it interact with the sort of formal disability NGO movement in the U.S.? And how does it operate in terms of deciding what its agenda is going to be and so forth?

A. First of all, it's important to recognize that NCD has no formal or legislative obligations to consult with the disability groups or the provider groups or anything. That's not required; they don't require us to do that. However, the NCD leadership has always been cognizant of the fact that we live in a democracy and in order to have an effective democracy you have to practice consultation. NCD has always, I think, done an exceptional job of involving and working with and consulting with the disability NGOs, probably not a very good job always of consulting with provider organizations and some others. I think NCD by its nature and its history has a bias towards a consumer viewpoint in that regard. But the work that gets done there is mainly policy recommendations, the basis of which are developed by a professional staff who are paid and guided to do this work. Presumably, they are looking for data and information that comes forth from a variety of different sources to substantiate the recommendations that the Council actually considers, votes on, and then publishes.

Selection of priorities

Q. So how do you decide, does the board itself decide what you're going to pursue as your main topics for the next year, or two years, or three years?

A. That's exactly how it works. The Council, the 13 members, are actually ultimately responsible for dividing the budget and the budget actually creates certain perimeters in terms of the amount of work that can be done within those perimeters. Then, sometimes on the basis of hearings, staff recommendations and otherwise, the Council identifies the target areas, the priority areas, for the next year or two.

Then the staff develops a work plan from the budget and the priorities, and comes back to the Council and says, you know, "If we do a report and some hearings on this matter, do you think that will give us sufficient information and a good basis on which to make recommendations?" I mean, the main product of the National Council on Disability, is recommendations. That's the job of the Council, to make recommendations on disability policy to the President and to the Congress. Those recommendations, in my judgment, are only as good as they are valid. And they are only valid; it seems to me, if they are substantiated by good data, by good rationale. In order to get those data and that rationale, you have to do consultation with the community, you have to study the literature, and you have to synthesize all that. Ordinarily our recommendations are the result of studies and/or observations in the form of hearings or conferences or something of that nature.

Main impacts of NCD

Q. And what in your view has been the main impact or impacts of NCD, particularly in the last five years, or you can back as long as you want actually?

A. Well, I must say I'm one of those skeptics who wondered if any agency making recommendations can have any effect at all. I was skeptical from the very beginning of the Council as an independent agency because I had seen the relative absence of recommendations from the prior Council, the Council before the independent Council, and those recommendations that were made seemed to have been virtually ignored. So the new Council that began in 1984 started by making a series of recommendations that included the disability rights law. ADA was clearly a result of that and that was clearly a huge impact, so it proved that it was possible for the Council to have an impact. Since then, there have been a number of other recommendations that the Council has made that have resulted in perhaps less evident, but I think significant, legislative changes.

The Council actually recommended that the Independent Living Centers be more involved in determining how their money was divided at the State level, and from that the Rehabilitation Act was amended to include State Independent Living Councils. NCD recommended a number of changes in Social Security legislation. It's also interesting to note that in the end when a recommendation is finally passed or finally implemented, it's probably a result not only of the Council's efforts but also of a variety of other groups. Sometimes it's hard to say who even took the initiative to begin with because I don't think there are too many original ideas out there. They sort of float to the surface every now and then, and sometimes it seems it's the right time.

Some of the accomplishments I would identify as of the Council, other groups might claim as their own and I think that's good. I think that's probably the result of having a democracy. Congress acts based on recommendations they get from a variety of sources, not a single source, and it's hard to find examples of where any one body is the final bit of influence. But clearly, you can trace the history of the ADA and since then, I think the Council has made recommendations about virtually every aspect of disability that have been incorporated by one means or the other into the law. Most recently, the Council has been working on recommendations that relate to personal assistant services for people with disabilities, and we have provided a great deal of information to the Administration and to the Congress. Some of that has actually been used in the work that's been put forth to date and I think more of it will be used.

The Council has tried to collaborate, as you know, with the United States International Council on Disabilities (USICD) and other groups, and members of USICD, to influence the way the United States Agency for International Development (USAID) spends its money and whether or not they actually use people with disabilities in the consulting process, in the delivery process, and whether they actually make it work to benefit people with disabilities in other countries. These are things that the Council does. The other thing that NCD can do that other groups can't do, because of our status as a government agency, is NCD can hold other agency administrators accountable in a certain way to the Council. I mean I just wrote a letter to the head of the USAID insisting that they meet with the Council, and that meeting was held. In my experience, I don't think an NGO could have gotten the same level of attention.

What would you change about NCD?

Q. If you were to redesign NCD what would you change?

A. I'm not sure I would change anything. I certainly wouldn't without thinking in depth about it. I don't think I could make any good suggestions about that. There aren't any real outstanding failures, you know, there are no broken pieces that I would try to fix right away. It seems to have withstood the test of time and it seems to be as effective now as it ever was. It's pretty well located; independence I think is very important. Some people argued and, in fact, the White House has argued, that it should be under the Administration's wing and it would have more clout, but I don't honestly believe that. I think if it were under an Administration's wing, it might be easier to have certain kinds of meetings in the White House, but by the same token you wouldn't be able to issue reports like the Council does that sometimes conflict directly with Administration policy.

Q. If you weren't redesigning, but if you had a wish list for NCD, would you add something, would you make the budget bigger, would you make it larger? Do you think being sort of lean allows you to do certain things that a bigger agency might not be able to do?

A. Well, I think I would not mind a larger budget. I think a larger budget would be advantageous and I think the Council could manage a larger budget. You know, there's a group in the Netherlands, the Dutch National Council, that was given a substantial amount of money, actually in comparative dollars, about 10 times the amount that NCD has. They use that money to good effect by conducting a major national public awareness campaign. I'd like for the NCD to be able to pay for advertisements about implementation of the ADA and tell people what their rights are on commercial television, the same way that the Transportation Department puts advertisements on television about buckle up for safety.

Pace of current progress?

Q. Some disability advocates have said that there has been a lull or even a backwards movement since the days of the fight for the ADA. Some people also say the younger people with disabilities don't even realize that it wasn't always thus, and they don't realize the fight that it took to get this far. How do you see NCD's role currently and what is your hope for what it will be doing five years from now?

A. The issue of the changing generations and the zeitgeist in the disability community and so on is an interesting one. Frankly, I do believe that these younger people with disabilities who were not confronted by some of the frustrations that those of us older folks confronted in the early days of the disability rights movement, nevertheless have their own frustrations. So I don't feel like we need to be feeling too self-conscious or too careful of the future of the disability movement, because I think that with young people, everything is relative. What to us might have been a big deal when we dealt with it, somebody else has faced and it wasn't a big deal.

I believe that the lack of health care and rehabilitation services for people with disabilities is going to become a huge issue. The current generation is going to be frustrated and rather shocked by the lack of sponsorship of rehabilitation and health care for people with disabilities. I think particularly that's going to affect younger and older people. Older people are going to discover that there really aren't systems of care for them in their homes; there aren't enough nursing homes; they have to pay for their own nursing homes and it's very expensive; and there's nobody to provide assistance to them in their homes. I think that's going to be a shock to a lot of people who are not disabled today but through the natural aging effect will be made disabled.

A lot younger people with disabilities are going to discover that their insurance policies and their Social Security policies only cover $2,500 of the cost of a wheelchair that may cost $25,000. These are things that are going to be shocking to people and that will inspire a new focus and a new fervor on the part of the disability movement. So I do think that social movements go forward in phases and they have their fits and starts and their ups and downs. The largest coming together in the disability movement clearly focused on the signing of the ADA, and I think there was a predicable kind of lull in activity after that. But I think there's a new wave coming on and I love to have that kind of excitement by young people. The National Council on Disability has a Youth Advisory Committee and the American Association of People with Disabilities has a Youth Award and mentorship kind of program and if I look at the energy that surrounds youth with disabilities, then I'm fairly optimistic about that.

Future of NCD

In regard to the future of the NCD, it's a very interesting question because currently the Congress acknowledges the importance of the NCD and they continue to reauthorize it. But to the extent NCD complains that there needs to be more legislation and those complaints or that advice confronts the Congress, who in this decade, I suspect, will not be eager to put in motion new programs that involve money, then the Council will ultimately come in conflict with both the Administration and the Congress. Depending on which one is supposed to be holding the bank book tight, that conflict will result at some point in some kind of backlash, I'm sure. I mean, if you're a thorn in somebody's side, the reaction is to pull you out. If the Council continues, as it has, to complain that there are not enough efforts to provide funding for rehabilitation, personal assistance services, etc., whoever they are complaining that to is going to get tired of hearing it. It's either going to go away simply because it's been said over and over again and nobody is paying attention, or if it's said in a such a way that they have to pay attention, they are just going to muzzle it by de-funding or by de-authorizing it. I think that's always a risk. So it's important for the Council to have allies in the community because again, the good thing about a democracy is you can't take something away that the people want. As long as the Council is representing the people I think we will be in a good position to continue to be a sounding board and a voice box.

Coalition between advocates for aging and disabilities?

Q. It seems to me that in a way, what you are suggesting, particularly with the issues around health care and rehab and so forth, you're almost suggesting a kind of coalition of the aging and people with disabilities, who may in fact be one and the same?

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