National Council on Disability
Quarterly Meeting
March 13-14, 2006
Coronado Springs Resort
1000 West Buena Vista Drive
Lake Buena Vista, Florida

MEMBERS
Lex Frieden, Chairperson
Patricia (Pat) Pound, First Vice Chairperson
Glenn Anderson, Ph.D., Second Vice Chairperson
Milton Aponte, J.D.
Robert Davila, Ph.D.
Barbara Gillcrist (via teleconference)
Graham Hill
Joel I. Kahn, Ph.D. (via teleconference)
Young Woo Kang, Ph.D.
Kathleen (Kathy) Martinez
Carol Novak
Anne Rader
Marco Rodriguez
David Wenzel
Linda Wetters

STAFF
Ethel D. Briggs, Executive Director
Jeff T. Rosen, General Counsel and Director of Policy
Mark S. Quigley, Director of Communications (via teleconference)
Martin S. Gould, Ed.D., Director of Research and Technology
Gerrie Hawkins, Ph.D., Senior Program Analyst (via teleconference)
Julie Carroll, Senior Attorney Advisor
Joan Durocher, Senior Attorney Advisor
Allan Holland, Chief Financial Officer (via teleconference)
Mark Seifarth, Congressional Liaison

GUESTS
Sheryl Stone, Transportation Disadvantaged Commission, Florida
Mark Jones, Services for Guests with Disabilities, Walt Disney Parks and Resorts
Julia Kates, Governor’s Working Group on the Americans with Disabilities Act, Tallahassee, Florida
Barbara Lynn Harden, Florida Alliance for Assistive Technology at the University of Central Florida
Gerardo Rivera, Florida State University

Monday, March 13, 2006

CALL TO ORDER
Chairperson Frieden called the meeting to order at 9:00 a.m. He welcomed guests and Council members.

ACCEPTANCE OF AGENDA
The agenda was accepted as presented by consensus.

INTRODUCTIONS/PUBLIC COMMENTS
Mr. Frieden asked members, staff and guests to introduce themselves. The names of individuals are listed on the first page. He then gave the members of the audience an opportunity to provide comments. Ms. Kates stated that the Working Group on the Americans with Disabilities Act in Tallahassee is a state-wide consumer driven organization appointed by the governor. The organization houses the clearinghouse on disability information and Real Choice Systems Change Grants. She stated that her organization also provides information and referral on ADA compliance to state and local government, private entities and the general public.

APPROVAL OF MINUTES
Motion 1
Mr. Wenzel moved to accept the minutes from the previous quarterly meeting. Passed.

CHAIRPERSON’S REPORT
Mr. Frieden stated that he had the opportunity to meet with the Office of Management and Budget (OMB) regarding the Council’s pass back. He said that some of the analysts at OMB believed that the Council was an advisory body that fell under another agency and received support from that agency as most advisory bodies in the Federal Government do. He added that they haven’t taken into full account that the Council provides its own administrative support and that its budget not only pays its staff and its members for their work, but also pays for items such as rent, personnel and financial services.

Mr. Frieden stated that OMB has to some extent misread the Council’s authority and the provisions of the law. He stated that in the future the Council should ensure OMB is well aware that the agency provides its own administrative support services and is not receiving any kind of free support service from another agency.

Mr. Frieden commended Council members for their ongoing hard work with their committees, teams and numerous meetings they have attended on behalf of the Council.

EXECUTIVE COMMITTEE REPORT
Ms. Pound stated that the committee has spent the majority of its time preparing for the January and March quarterly meetings. She commended the great work of the committee members for the tremendous help it has provided the Council.

EXECUTIVE DIRECTOR’S REPORT
Ms. Briggs reported that she has been planning and preparing for the quarterly meeting. Ms. Briggs stated that Jeff and she completed midyear informal staff performance evaluations in February and March.

She stated that Council staff is beginning to prepare for the July quarterly meeting to be held July 25-26 in Washington, D.C. The Council plans to conduct an ADA seminar on July 26. She has been looking at staff work load and has taken a survey, which was submitted to the policy staff. They were asked to submit an average amount of time they spent per month working on various tasks. The results of the survey follow:

• Average staff time spent preparing a contract  –  8 days
• Average staff time spent per month managing a contract that results in a report – 3.5 days
• Average staff time spent per month managing a contract that results in a paper – 2 days
• Average staff time spent writing a paper in-house - 16 days
• Average staff time spent editing documents prior to submission to Mark Q. – 5 days
• Average staff time spent working with the teams – 1 day
• Average staff time spent working with advisory committees (3 advisory committees with two staff) – 7 days per month or at least one-third FTE per committee. This does not include support staff time spent arranging conference calls, preparing minutes, etc.

She stated that other activities requiring a large amount of staff time included

• Handling the review process once proposals were submitted to the Council 
• Negotiating contracts and writing cooperative agreements
• Preparing correspondence, writing testimony, preparing presentations for Council members, and giving presentations
• Attending internal and external meetings
• Responding to informational requests
• Keeping track of current disability issues
• Researching various laws and materials
• Drafting press releases
• Serving on external tasks groups, committees and interagency committees, etc.
• Mentoring/supervising interns
• Identifying, tracking and/or obtaining and reviewing relevant government, academic, think tank, and community documents.

POLICY UPDATE:

Mr. Rosen added that much of the support staff time is policy related in addition to their work on logistics. He stated that the livable communities report is in draft format and that Ms. Novak, chair of the health committee, Mr. Seifarth and Mr. Gould will be reviewing the draft. External reviewers will also review the draft document and the full committee will be involved with the draft next month.

Mr. Rosen stated that the Council has been able to fund the mental health project and it is underway. Dan Fisher and Judi Chamberlain are the contractors. The project should commence in two weeks with the completion targeted for December 2007.

Mr. Rosen stated that Ms. Wetters will be coming to Washington to follow up with some of the dialogue with the administration and Congress. He said they also will follow up on the long-term services and supports report as well as deal with a number of issues that were previously discussed with the administration and Congress. Mr. Rosen stated that the action plan for the employment project is being followed.

FINANCE COMMITTEE REPORT
Mr. Wenzel reported that the Finance Committee has been meeting on a regular basis. He stated that the Council has saved around $9,000 by using very stringent budget methods. Mr. Wenzel stated that the Finance Committee meets on a monthly basis to discuss both the agency’s budget and a plan to address the decreased FY 2007 budget.

NCD’S ASSESSMENT AND PLANNING SESSION

Overview of NCD’s Mandate
Mr. Hill explained to Council members how to effectively utilize its mandate. He stated that what the law requires regarding educating and informing Congress and the Administration on disability matters is ambiguous yet very specific. He said the question is what the previous legal interpretation has been? What prohibitions are included? From the Council’s point of view, given the reports the Council has released and the progress that has been made, the question pending is how effectively those reports are being addressed by Congress and the Administration. The Council should evaluate how its reports are having an impact in Congress and the Administration, and rethink how we use and interpret our mandate.

Mr. Hill stated that the corollary to the old political aphorism “all politics are local” is “all politics are personal.”  He said that frequency of individual personal contact on the Hill and with the Administration goes a long way towards getting attention on a particular issue.

Mr. Hill stated that when the Council meets in Washington, D.C. members should meet with their Representatives and Senators in a coordinated way with a message that corresponds to a strategic goal of the agency’s research and priorities.

Mr. Hill stated that Mr. Seifarth’s activities show a lot of promise in outlining the congressional agenda and where the Council’s priorities and research are moving.

Mr. Hill stated that in other statutes, the mandate of educating and informing Congress and the Executive Branch seems to be very broad.
Mr. Hill suggested that the Council be more willing and eager to be more aggressive strategists with Congress and the Administration.

Mr. Hill stated that visiting Congress and committee staff in person to advise them is potentially a much more productive way to get our views known.

Mr. Hill stated that the broadness of the Council’s mandate is a gift as well as a burden because it provides little direction. The Council will be evaluating ADA’s effectiveness. The results of this evaluation should be reflected in policy decisions that Congress makes. If the Council plans to act more assertively with Congress and the Executive Branch, we must prioritize our activities.

NCD Accomplishments
Ms. Pound stated that for quite some time she has been an advocate for the Council’s successes, and expressed her appreciation for the Council’s hard work. She commented on outputs and outcomes. She stated that government wants to know the outputs that result from the money they are expending. What are the deliverables?

Ms. Pound said that the Council also wants to show outcomes. It is the Council’s desire to see significant improvement in the independence and productivity of Americans with disabilities.

The Council has produced reports for the last 24 years. Fifty-five percent of all reports have been produced in the last four years. She added that many of the reports have more than one phase.

Ms. Pound stated that the Council should increase its interaction with all of our partners: people with disabilities, agencies, businesses, etc. She believes that one of the ways the Council has taken real leadership has been with its ADA observance the last two years, including the conference last year.

Ms. Pound stated that another way of interacting with the public is through the Council’s reports. The stakeholder meetings, public hearings, consensus conferences and advisory committees all gives us an opportunity to involve people who otherwise might not be involved in our work.

Ms. Pound stated 42 percent of Council reports have related to the area of civil rights. Overall in the reports, 35 percent of the 65 civil rights reports were done in the last four years for a total of 53 percent.

She stated that the Council’s Saving Lives report demonstrated forward thinking.

Ms. Pound believes there are some opportunities to build upon what the Council has in its current environment. We have been very successful in interacting with the public in more ways than we were instructed to do by law.

She stated that the Council tried to organize its reports within the over arching framework it chose - livable communities.

Ms. Pound stated that the Council’s The Current State of Transportation for People with Disabilities in the United States was a comprehensive report of the status of transportation for people with disabilities in the US. Some aspects of the new reauthorization of transportation legislation include Council recommendations. The report has been used to evaluate local transit systems around the country.

Ms. Pound stated that the Council has done work related to the Air Carrier Access Act that was very interactive in terms of pulling together stakeholders and working for outcomes such as new rules relating to service animals, pending rules relating to people who are deaf and hard of hearing, and rules relating to screening procedures and people with disabilities. Ms. Pound stated that the Council’s six education papers definitely have had an impact on the reauthorization of IDEA. GAO cited the Council’s work as it recommended increased monitoring of special education at the federal level.

She stated that the Council’s report on emergency preparedness was widely used and the Council’s successes have caused a heightened energy about disability in emergencies at the federal, state and local levels.

In terms of employment, certainly the reauthorization of the Temporary Assistance for Needy Families Act (TANF) was impacted by NCD’s recommendations in this area. She added that the agency’s employment reports have generated a lot of discussion and interest in terms of potential changes in Social Security.

She stated that the Council has produced eleven papers and had numerous outcomes in the international arena. Some of the outcomes resulting from Council recommendations were the creation of the Disability Advisory Council at the State Department, the inclusion of human rights and human rights reports, and accessibility in rebuilding efforts. International Watch, one of the Council’s advisory committees, shares in these accomplishments.

Ms. Pound stated that there have been three reports on health care. The Olmstead report was used by various states and by the Federal Government. The report on long-term services and supports has led to many opportunities for the Council to present its recommendations to disability groups and government agencies. Ms. Pound stated that the quality of work is really excellent.

State of Current Projects
Ms. Novak stated that the Council should help policy makers and the nation look at the fact that most disability programs were after thoughts. She stated that there are many people with various types of disabilities who are living longer and want to have fulfilling lives.

Ms. Novak stated that people with disabilities should be free from policy and program disincentives (e.g., Social Security means test) that restrict their ability to make meaningful choices in life, such as securing employment. She said the average person with a disability does not have a salary of $250,000 a year to be able to pay for the technology, personal assistants, etc. that are needed.

Ms. Novak suggested that the Council dialogue about consumer-directed services and supports that empower people to participate fully and have choices. She commended the Council for backing the livable communities concept so powerfully and enthusiastically. She believes that the Council can begin to move forward toward researching issues involving more consolidated, coordinated, and coherent service delivery system approaches, and advising the Federal Government about the same. She added that it is quite admirable that the Council has used as its framework the livable communities model that considers the whole person.

Ms. Novak stated that the most recently released reports are the State of the 21st Century Long Term Services and Supports (December 2005), The Social Security Administration’s Efforts to Promote Employment for People with Disabilities (November 2005) and the progress report. The CurrentState of Transportation for People with Disabilities in the United States (June 2005) and Saving Lives: Including People with Disabilities in Emergency Planning (April 2005).

Ms. Novak said that the long-term services and supports report is not focused solely on personal assistant services, but also is focused on the areas of housing, transportation, and medical care. All of these together make up a complete life.

Ms. Novak stated that there are several reports the Council is working on that follow the livable communities framework.

Ms. Novak stated that the financial incentives study will look at not only one aspect of a person’s life – employment - but it will look at education, healthcare, housing, income replacement and other aspects.

Ms. Novak stated that it is important to stay in touch with the agency’s mandate - ADA research and monitoring.

Ms. Novak stated that we need to resolve the number one barrier to employment for people with severe disabilities - access to appropriate, and affordable health insurance and Medicaid. She added that accessible transportation is also a very critical part of the Council’s research.

Ms. Novak stated that as the Council works toward its vision we should stress that we want all Americans, regardless of their ability, to make a contribution to society, to their community, and to their family, for God does not make mistakes. There is a gift in every soul and we prohibit that gift from being used when we warehouse people.

Dr. Davila stated that the Council is a task oriented group. He said that the Council is a working group that has done a wonderful job. He stated that he does not just want to be remembered as the group that produced a ton of reports. The Council should find something a little more specific with its agenda for the next two years.          

Mr. Aponte stated that NCD’s Social Security Report found that although the Social Security Administration has instituted a number of incentives to reduce numerous obstacles to employment faced by those on Supplemental Security Income (SSI), such efforts have had little impact because few beneficiaries are aware of these incentives and how they affect benefits and access to healthcare.

Mr. Aponte stated that the Council may benefit by broadening its reach to include other institutions, advocacy groups, entities and individuals so that the message that relates to all these issues can be broadcast widely. He suggests that the Council establish a coalition.

He stated that many people are reading the Council’s reports and listening to what we have to say. From people in Congress to the moms and dads in the community who have computer access.

State of the Environment          
Ms. Wetters thanked the NCD staff who worked on the paper, particularly Dr. Gould who took the lead in the discussion, and included Dr. Hawkins, Mr. Rosen, Mr. Seifarth and her.

The group discussed the planning committee’s ideas regarding the agenda for the quarterly meeting in Orlando. It is important to: understand the environment as the Council prioritizes where it is going this year and next: decide which issues in our environment (which encompasses the entire country) we must address in making decisions.

Ms. Wetters stated that the paper identifies four major areas: resources; leadership; identification of constituencies; and the fact that there is a policy of disability.

Ms. Wetters stated that one of the major components of our environment is federal and state funding issues.

Dr. Anderson discussed the general traits of the federal and state funding issues. During a 20 year period (from 1985-2005) Social Security, Medicare and Medicaid represented 29 percent of federal funding. Twenty years later, in 2005 they represent 40 percent of federal funding.

Dr. Anderson also said that when looking at the budgetary spending and discretionary spending from 1985, mandatory spending was 42 percent of the federal budget, which represented 44 percent of federal funding in this area.

In 2005, the mandatory spending increased to 54 percent of federal funding, and the discretionary expenditures decreased and the federal funding was 39 percent. There has been spending for mandatory programs, which represents more than one-half of the federal funding in this area.

Dr. Anderson stated that we can expect a change in the federal and state spending for several reasons. First, the baby boomers are retiring and the age in America is growing. People are living longer and there are rising healthcare costs to consider. There are new populations of people with disabilities resulting from the war in Iraq, and Iran and conflicts in other places.

Dr. Anderson stated that the second point would be a provision in the federal budget. In 2007 the federal budget is predicted to have a deficit. This year the federal deficit is at an all time high of $4.23 billion. Any savings will be assumed slowly, so growth and spending for these mandatory programs will continue for the next five years, including $13.6 billion for Medicaid programs for people who are impoverished or disabled. There is also going to be a reduction in spending of $36 billion in Medicare for people who are elderly.

Dr. Anderson stated that one of the implications proposed by the federal budget for hospitals, nursing homes and other health providers would be to decrease or reduce the number of nursing homes. He added that this will be a difficult feat, because 34 percent of the people in nursing homes are dependent on Medicaid supplements. The federal spending for this mandatory program has increased significantly in the past 20 years. It will continue for the next five years and maybe longer.

Ms. Wetters stated issues that are of importance to the Council are as follows:

• long-term services and supports
• healthcare reform
• education reform
• workforce development

She stated that this is the first time the Council has engaged in dialogue on the same issues that concern others in the population. In her opinion there is not one charismatic leader in disability policy. In terms of the agency’s agenda, we need to look at leadership and where we support it and what role we have in that organization or in that activity.

Ms. Wetters stated that the Council needs to look at where the resources and power are in terms of the issues that are important to us. We are looking at more state and federal collaboration. The Council needs to be effective in influencing government and those agencies at the federal level that have the resources, both people and money, if we are to move forward with our policy and with issues that are of concern to the Council.

Ms. Wetters stated that the Council needs to recognize as it moves forward in the next three to four years that it is going to experience a time of presidential change. She asked how the Council will involve others, and how it will help ensure that disability policy is a platform issue in the next election.

In terms of leadership, Ms. Wetters stated that the Council needs to understand that in addition to federal agencies, we must consider the federal-state relationship. When looking at long-term services and supports, workforce development, education reform and healthcare reform, those things that are of concern to the Council, most do not work unless states and the Federal Government can work collaboratively.

Ms. Wetters stated that the Council has already placed itself into future dialogue with its evaluation of No Child Left Behind, and our current employment projects. These are two issues to concern ourselves with as we establish our priorities and our plan.

She believes this Council has struggled with what its role and leadership are. She hopes that the Council can move into some dialogue about what influence we have with federal agencies and states in moving this collaboration forward.

Ms. Wetters stated that the Council’s past progress reports and its 2004 reports show an improvement in federal data collection. The Council has made recommendations to empower federal offices to receive the exact data from people with disabilities.

Also, the legislative, executive and judiciary branches have come up with five definitions of disability. She added that federal agencies have their own data collection and system that they use. There presently is no mandate or funding to push for inclusion for the long term related to data collection.

Ms. Wetters stated that the politics of disability policy is an area that needs to be understood as the Council sets its action plan. She added that the action plan needs to be clear in its standards as well as its outcomes. The structure and operation of disability programming needs to be examined by everyone, not just the Council.

Ms. Wetters stated that the Council needs to understand that this is a policy issue and that the issues that are important to people with disabilities run parallel to those without disabilities.

Ms. Wetters indicated that state, local, and federal levels can help the Council take these messages forward. The best way of doing that is to find out the constituents in terms of disability data and the issues of structure that fall under the umbrella of disability policy.

Ms. Wetters stated that the planning committee worked on this paper with some broad dialogue about things they wanted to have considered as they made an action plan.

Ms. Wetters stated that the Council has been adept as path finders and sharing new information and research with a lot of individuals who need to have that information. She said that the Council has tried to be path makers - turning recommendations into operational change at the executive branch and judicial levels.

Ms. Wetters stated that figuratively the Council would want the Federal Government and others to see what we see as a result of our policy, and to know and understand what we have learned as a result of our research, evaluations and conversations. As always, we want some of the major departments in the Federal Government to back us up and have them proceed with the work that has been undertaken by the Council.

Mr. Rosen stated that Medicaid and Medicare, which is in crisis, is precipitating the fiscal pressure on the budget and passing it on to states. This is driving the policy right now.

Mr. Rosen stated that the Council’s Long-Term Services and Supports Report does not have very specific targeted recommendations regarding Medicaid and Medicare.

Ms. Wetters stated that the Council’s present goal is to look at the discussion questions and to begin dialogue with emphasis on the paper and moving on into a broader discussion on setting Council priorities. She stated that the Council is limited in dollars and resources. We are committed to looking at things that surround us, that are going to influence our decisions whether we want them to or not.

Ms. Wetters stated that she believed it was time to discuss what these challenges are and how we turn them into opportunities for our own vision and agenda.

Ms. Rader stated that every individual disability organization in Washington, D.C. and across the country seems to think that their disability is more important than other disabilities. Everyone is competing for federal dollars and recognition. The Council needs to work more on creating the spirit that got us to the passage of the ADA. She said even though we may need to look at the ADA, changes may need to be made. However, there was a certain collaboration that created the ADA that worked across all disability organizations. She said if the Council continues to do what it is doing, they need to try harder to get across the variations of a single disability and make more of an effort and work in partnership.

Dr. Davila stated that since his beginnings with the Council it has been talking about a one-stop shop, something that would be a good quality coordinated service to address the needs of people with disabilities entering government service. A one-stop shop would mandate collaboration and coordination among all federal agencies.

Dr. Davila stated that he thinks that there needs to be a well-coordinated office of people who are completely competent and knowledgeable about the needs of people with disabilities. He stated that the Council should be perhaps pushing the government and Congress towards establishing such an office.

Ms. Novak stated that there are so many egos and turf issues in this area, whether it’s advocacy or public administration that gets in the way of doing what legislation intended to do - help people with disabilities and their families to be part of this nation.

Essentially, different disabilities do require different types of supports and services, but essentially the Council has one goal and that is to support and empower people to be as fully productive and participatory as possible.

Ms. Novak stated that we need to start funding people and stop funding programs. Things are not going to change, for the power is with the money. We need to empower people by giving them vouchers, and the control over the dollars to buy the services and supports or the assistive technology they need. We need to start moving away from this multi-layered bureaucratic redundant system that does not work.

Ms. Novak stated that we are not cost effective. We are not humane in the way we provide services and supports to people. She stated that the only way we can accomplish that is to move to some sort of centralized evaluation and also give individuals control over some of their funding so that they have some power.

Ms. Novak suggested that some sort of demonstration project creating livable communities. Such a demonstration might include options wherein people can volunteer to participate and work with data collection on outcomes and cost benefit or cost effectiveness over a five-year period. She stated that she has no doubt that the Council can demonstrate what they are doing better. People, if they chose, can continue to move toward having services delivered rather than continue under the current fragmented inefficient system. The money would start coming to the people rather than to staff and different organizations and agencies.

Dr. Kang stated that this one-stop plan would be successful in creating one cabinet level-independent department over disability and pulling in all the agencies under one department, which would be ideal. Previously, there was no office for people with disabilities at the Department of Labor and now they have another assistant secretary level office that started during the Bush Administration.

Ms. Briggs stated that some years ago, Senator Orrin Hatch was very interested in setting up an Administration on Disability similar to the Administration on Aging.

Mr. Aponte stated that in Florida, a single agency was created to serve people with disabilities. When creating an agency there are problems of budgeting, managing and organizing. He mentioned several agencies that struggled at the start.

Ms. Novak stated that she does not want the government to get bigger but smaller. She said that she sees a lot of money being spent on redundant bureaucracies. For every Medicaid waiver, states usually have three, four and five of them with separate administration and funding.

She stated she would like to see a program for people to have a whole life and not wear themselves out to maintain eligibility. They acquire whatever supports they need to be productive and participating citizens. At the present time there is a critical need to simplify the current eligibility system.

Ms. Pound stated that many people think that their rights are taken care of under ADA, but many people’ rights are not. People who are deaf and hard of hearing have no assurances that video on the Internet will be captioned unless it’s on the federal side and then maybe it will be captioned. People who are blind have no assurances that they can shop on the Internet. There’s less assurance in terms of television and DVDs. Blind people can not operate them because the initial menu is inaccessible.

Mr. Wenzel stated that he wants to get Congress to at least acknowledge the Council’s existence and address some things. This past summer the Council has its program at the Kennedy Center, followed by a seminar in which the Council was able to bring together a cross-section of the disability community. He suggested that the Council  conduct a national conference on disability in which they bring everybody together.

Ms. Wetters suggested an ombudsman who would be a troubleshooter.

Ms. Rader stated that she agreed with Mr. Wenzel and Mr. Hill on the fact that the Council needs to educate people on what needs to be changed and to build a “change agent.” She suggested designating a captain to help us carry out the message and make the change. She stated that the Council has to create a clear vision of what that change should be.

Ms. Rader inquired how the Council would go about accessing legislators to present its ideas so that they can convey what is important, what is of importance to the Council and for generations to come. At the end of the day it is Congress that will make the significant changes. She added that the Council, through its papers and reports, has been very capable of explaining things,  but the next stage in the process should be to enlist supporters.

Ms. Martinez stated that the disability community should forecast what issues will present themselves within the next 10 to 20 years, such as issues that were mentioned earlier that are not covered by the ADA. She stated that the Council has really made the cross-disability approach a priority and has managed to circumvent a lot of the disability specific in-fighting. The agency’s reports have been very clearly constructed to benefit as many disabilities as possible. The Council should have a more incremental approach. It would be nice to see an Administration on Disability.

Mr. Rosen stated that the conference held in Houston where there were over 300 advocates was a good one with numerous ideas that came from it, but there were no resources to follow up. The ideas did not have momentum to become something greater. The Council had to continually push and there were minimal outcomes. The Achieving Independence report provides a lot of information that came out of that conference with a number of recommended follow-ups.

Mr. Rosen stated that there was a transition paper that the Council did when President Bush was elected that included the idea of an ombudsman. He said that staff and Council met with the chair of the Domestic Policy Council and discussed very extensively the idea of an ombudsman. Mr. Rosen stated that staff and members have been meeting regularly with Congress about the issue of long-term services and supports and what it means for Medicaid and Medicare. He said that the number one dilemma that the Council faces with Congress is that there are various committees that have no natural mechanics to work together.

Mr. Rosen stated that he is very interested in trying to make sure the Council continues to support its mandate without being seen as organizing grassroots.

Ms. Gillcrist stated that the Council should propose to the Executive Branch the establishment of a department of disability and have all the components incorporated that were mentioned by Ms. Novak.

Mr. Hill stated that there are certain pieces of legislation that are moving this year and next year that the Council should be aware of. If the Council has a research paper that has pointed out a problem related to any upcoming legislation we should develop a strategy to have language put in one or another of these bills to satisfy the concern.

Mr. Hill suggested that the Council make its recommendations to the Senate and House Commerce Committees. He recommended that the Council write the chair of the committees, follow up with meetings, and get members for follow up. Post the recommendations to the committees on NCD’s Web site.

Ms. Rader stated the Council should document the recommendations that have been made into actual policy affecting the lives of people with disabilities. This may help the agency be recognized for the research that is done and its transformation into policy.

Ms. Wetters stated that the Council needs to ensure each member knows where other members are putting their energy and time and what’s being done as it relates to recommendations, visits and strategies.

Dr. Kang stated that he liked the idea of having a national conference and the possibility of having disabled veterans. He stated that the Council can accomplish short term projects without requiring much funds.

Mr. Frieden stated that it has been over thirty years since there has been a White House Conference on Handicapped Individuals. He believes that the Council can act on this by finding the appropriate language to put into NCD’s authorizing statute or into some other moving legislation to assure that it gets done and has the proper support.

Dr. Gould stated Dr. Kahn is heading up a project on national disability performance indicators and data. The RFP as constructed, when completed, will allow the Council to put forth a construct and a framework for disability statistics that could be adopted by other agencies. Dr. Gould stated that presently there are no data or statistics that reflect anything about the status of Americans with Disabilities.

Dr. Gould stated that there is no requirement for this country to conduct an accurate count of Americans with disabilities. This is something that the Council has addressed in its progress report. He stated that the Council also discussed that there are few requirements for outcome goals for the Federal Government and its agencies.

Dr. Gould stated that the Council may want to consider some type of strategy or action to opt for either a legislative proposal aggressively that asks for an accurate enumeration of Americans with disabilities and all the things that are attendant to that, or an executive order or guidance from OMB.

Mr. Rosen inquired how the Council could make more action-based recommendations given the little resources it has. The opportunity is much more viable with Congress than it is with the Administration.

Mr. Rosen stated that the Council recognizes that the Administration has responsibility and has been engaged in collaboration with the Federal Government in many of its activities. The Council has been meeting with the National Institute on Disability and Rehabilitation Research (NIDRR) and the Rehabilitation Services Administration (RSA) on a regular basis. He stated that the Council is looking forward in covering all the areas that were included in our mandate. The Council has seen some successes with the President’s executive orders in the area of transportation coordination, and emergency preparation. Mr. Rosen stated that the Council’s recommendation to Congress often comes with very specific requests of what the agencies might do in terms of the implementation and responsibilities, whether its coordination, producing reports or the need to outreach to specific populations. In Congress, they have been very specific about who needs to do what. The Council has seen a much better response

Mr. Rosen stated that the Council is addressing the issue pf public awareness in a couple of areas: emerging technology paper in which the Council looks at new ways of communicating with people, and ADA implementation, which has as one of its deliverables the development of communication strategies.

Mr. Aponte stated that he had the privilege of attending the White House Conference on Aging in which a major area of the discussion was how to define disability. The definition of disability will affect the kind of data we’ll collect for whatever issues the Council wants to discuss.

Ms. Wetters stated that the definition only applies to eligibility for Social Security and will not apply for access to vocational rehabilitation or for educational supports in either post secondary or K-12.

Mr. Hill stated that he would make a broad statement about the disability definitions and urge the Council to take caution. He stated that the key is to make sure the definitions as they exist for their particular purposed are actually advancing those purposed as opposed to trying to homogenize the definition of disability. He gave the following example:  Social Security Administration and the Fish and Wildlife Service have two different definitions of disability.

Mr. Rosen suggested that the Council start brainstorming about its short and long-term priorities for FY 2008. Having such a session will help the agency come up with some more concrete possibilities for 2008.

RECESS

The meeting recessed at 4:00 p.m.

TUESDAY, MARCH 14, 2006

Mr. Frieden reconvened the Council meeting at 9:00 a.m. and asked Council members and staff to once again introduce themselves.

Council members continued their dialogue on the agency’s state of the environment as well as set future and strategic priorities, which was followed by a brainstorming session. The following are some of the ideas from the brainstorming session.

Ms. Gillcrist questioned who would be in charge of following up on the recommendations and legislation.

Dr. Kang suggested having a specific presidential executive order regarding the possibility of an independent department of disability.

Ms. Pound suggested having shorter reports and a determination of whether certain subjects could be covered by papers. She also suggested investigating the possibility/feasibility of staff doing more in-house research instead of contracting out.

Ms. Rader suggested that the Council take a look at how to translate the research and reports into actual program and policy implementation.

Ms. Martinez suggested the determination of cross-cutting issues from within the reports.

Dr. Anderson stated that he sees the Council finding a way to document and follow up on what they are doing when reports are released.

Dr. Davila suggested the Council develop a priority agenda. He stated that they can think of major areas such as educational training, employment, long-term care, independent living and civil rights. There are four or five areas that are really of critical importance to people with disabilities, and to others. He stated that the Council should be guided by the understanding that they need to look at things in the hierarchical priority range for these areas.

Mr. Rodriguez stated that there should be an action plan to have members of the Council educate Congress and actually have a plan to visit members more frequently in Washington, D.C. He added that the Council does not need to produce as many reports, but to do more face-to-face meetings to educate Congress and the White House.

Ms. Pound suggested having a list of reports be placed on NCD’s front Web page and to develop a subject area e-mail group.

Ms. Novak stated that she would like the Council to continue to promote research that emphasizes coordination of services and supports for people with disabilities.

Dr. Davila stated that the Council can take a strong leadership role in the collaboration of governmental agencies at all levels.

Dr. Kahn stated that there should be innovative state laws and structure.

Ms. Gillcrist suggested the legislative approach.

Ms. Pound stated that there should be a page limit to reports, and a limit on the number of recommendations listed in the reports. Reports should be available in both HTML and PDF. Also, there should be a short format which should include only the executive summary and recommendations.

Mr. Frieden suggested that the Council prioritize some of its recommendations from each report that has been done over the last year and figure out which ones can be used to take to Congress per Mr. Hill’s suggestions and see how we can translate that into actual legislative language to be put into bills.

Mr. Wenzel suggested partnering with a non-profit organization like the National Organization on Disability (NOD) to conduct a national conference, with NOD being the sponsor of the social portion, and the Council concentrating on the actual setting up of the different meetings and developing the agenda as well as determining the final language of the report.

Ms. Pound suggested routinely conducting one of NCD’s quarterly meetings in a non-face-to-face manner to save money. Secondly, to control the presentation of information and reports, to make it easier and faster, post them in an accessible fashion on the Internet.

Mr. Rodriguez stated that the Council should consider focusing on a conference as they invite businesses and its leaders in regards to people with disabilities. The Council has a business advisory committee and could use that to steer business leaders to come to the conference and understand how more people with disabilities can be employed.

Ms. Rader added that she thinks that the Council should really look at ways to partner with business and help them understand how business plays a role in employing people with disabilities and in giving them greater economic independence.

Ms. Gillcrist suggested the Council somehow devise a plan to approach the White House on the importance of the work the Council is doing and their participation in trying to streamline ways people with disabilities can get help. The Council should help various agencies coalesce so they can get back to the idea mentioned earlier about a one-stop shop.

Mr. Aponte stated that the Council should jointly seek some sort of work with the Ticket-to-Work Panel. The Ticket Panel is presently developing a set of strategies for a vision for the future for people with significant disabilities. He added that he believes it is important that the Council somehow manage to establish the best possible ongoing relationship with the White House.

Dr. Davila stated that the Council needs to find a way to convert many of our reports into professional articles and journals.

Mr. Aponte urged the Council to continue to strive to develop a model that would incrementally involve business concerns at all levels. In addition, we should partner with federal agencies and departments to connect with and promote the idea of working with businesses.

Ms. Novak suggested that the Council comprise some sort of working group of people with diverse disabilities and needs around the country to brainstorm about how they could come up with a coordinated livable communities and long-term services and supports model.

Dr. Kang suggested the Council may want to develop specific recommendations asking the President to have an executive order mandating government officials in positions of authority to study the possibilities of solving this complex problem at the highest level and then report it to the President.

Mr. Aponte suggested also including chambers of commerce nationwide for they access hundreds of thousands of business concerns.

Mr. Wenzel recommended that the Council take the idea of a national conference and put it into some kind of committee and look at all of the possibilities for conducting it.

Dr. Anderson stated that the Council should think of what they can do in order to make the lives of people with disabilities in the communities, as mandated in the ADA, a reality.

Ms. Martinez stated that it is really important for the Council’s advisory committees to develop the leadership of people of color as well as youth. If FACA is the only way to get this done, she said that the Council should continue with the committees, but figure out how to make them less work for the staff.

Ms. Novak stated that she likes the short-term goal, that the Council analyze existing bills and tie Council research to recommendations for language to be inserted in these bills.

Mr. Rosen stated that there are two categories that the Council will try to analyze: what the Council wants to accomplish and how it wants to accomplish its work. He added that there are many suggestions on how the Council should conduct its outreach to Congress. Also, there has been plenty of discussion regarding collaboration and public awareness.

Ms. Gillcrist stated that the Council should act as ambassadors, real communicators to Congress and the White House and a system should be devised to make it happen.

Mr. Frieden stated that the Council could go back to their reports and find those recommendations that are most important and meaningful and put them into the context of the current legislative environment. In other words, we analyze them according to what bills are being considered in the Congress as well as analyze them according to how they can be translated into legislative recommendations.

Mr. Frieden stated than the Council can devise some language that the committee could incorporate into their bill that would reach the objective outlined in its recommendation. He said that Council members can be assigned to meet with members or staff in Congress who are interested in and perhaps representative from their state or region, explain to them not only the Council’s recommendation, but also give them specific language that they might consider introducing into their bill.

Mr. Frieden stated at the same time that the Council would try to brief the White House Domestic Policy staff on its proposal, let them know what, in fact, the Council is doing and how important it would be for the administration to support the bill, its provisions,

and to highlight NCD when it comes time for the passage and signing.

The Council presented the issues of importance and ranked them accordingly.

Mr. Frieden stated that although the issues and priorities presented are of equal importance, he said that the legislative project probably needs to begin right away. He felt that there was a great consensus towards this. The staff needs to develop a plan and inform the Council members on what the most feasible way is to approach it.

Mr. Frieden stated that health care is a major report that is underway, and incorporates long-term services.

Ms. Pound stated that the Council has not completed its work on the emerging technology paper and that it should emphasize where the gaps are in the current Telecommunications Act as it relates to people with disabilities so that the Council will have recommendations on what’s coming out.

Mr. Rosen stated that to make sure that there is good continuous communications between staff and members, the Council should have a strategic planning committee. He suggested that somebody from the Executive and Finance Committees make sure that there is brain trust aligned with the resources. He added that through the work of the planning committee, it can start to actualize the ideas on paper in forms of options from which the Council can pick and choose.

Mr. Rosen stated that since the Council has made Congress one of its main priorities, it should devise a way for members to be involved.

Mr. Frieden informed members that the FY 2008 budget is due to OMB by August or September of this year. He added that the staff is in the process of preparing the budget request. It will be approved by the full Council at its July meeting. He added that members need to submit to staff the policy items to be included.

Ms. Rader stated that the Council needs to think about the activities and recommendations that will have real impact because the White House does not want to continue to review things.

Ms. Briggs stated that the issues that are covered in the FY 2007 budget request are: the state of health care for Americans with disabilities and the Vocational Rehabilitation Act’s outcomes and effects.

Mr. Rosen stated that staff has paired down health care considerably. He stated that priorities were deleted that involved reaching out to culturally diverse communities.

Mr. Rosen stated that we kept the VR scope of work, which will evaluate where VR is effectively serving its constituents. It also intends to look at the restructuring of and the effects of the service on the constituents. He stated that report implementation had to be deleted and that emerging issues was kept, but at a reduced amount ($75,000 – down from $125,000). Mr. Rosen indicated the budget amounts for each project(s) expected to commence in the remaining fiscal year and FY 2007.

Mr. Rosen stated that the Council can propose a more action-oriented 2008 budget, but if it deviates from what is done traditionally, it will require a marketing approach to make sure that the bottom dollar for us is to move in a new direction and how the funds will be used.

Ms. Rader recommended that the Council look at the ADA Restoration Act, the ADA Impact study and long-tem services and supports for 2008 and look for very specific ways that the Council can impact legislation by saying specifically what language should be included in the bill.

Ms. Wetters stated that she would be interested in staff having some discussion on whether the items presented should be considered budget items. She stated the great things that the Council does is seek input through the advisory committees, through public meetings and when traveling, through functions that staff and Council members attend and speak at in order to educate. She wanted to see this reflected as a line item in the FY 2008 budget request.

Mr. Rosen stated that everyone should keep in mind that this Council has a Business Advisory Committee that has been ongoing under the employment project.

Ms. Pound stated that the Council has focused on many areas, but not much on the important issue of housing. She suggested that the Council do a paper in the area of housing.

Ms. Pound stated that there are not enough teachers in this country who are qualified to teach students with disabilities, and if we don’t find a way to understand the problem and recruit people into these fields, we are going to have structures with nobody to work the structures.

Dr. Kahn recommended that the Business Advisory Committee liaison contact David Wenzel and staff to develop a program for supporting the advisory committee meetings.

Mr. Rosen stated that the Council has a liaison for NIDRR and CDC, and the Council tracks the work of both agencies. He stated that the Council has continuously looked over its shoulder to make sure that it understands fully their priorities. With respect to NIDRR, the Council has had a number of meetings that involved Dr. Davila, to consult with them about what their priorities and long-term strategies are. In terms of what the Council can do, it’s really limited by available resources.

Dr. Gould stated that from time to time Congress has asked us to do work, and from time to time it has given the Council money. Other times Congress has mandated work without providing any additional funds. Other agencies also have come to us and asked us to do work. For example, the Social Security Administration asked us to look at transition issues.

Mr. Rosen stated that in the past Congress has asked the Council to do work that it doesn’t pay us for. He said that Ms. Briggs, Mr. Holland, Mr. Seifarth and he met with the Senate Appropriations Committee last week to talk about the Council’s budget.

Mr. Rosen stated that the Council is focused on long-term services and supports because Congress at the moment has Medicaid and Medicare on its agenda. He said that the Council staff has told Congress about the Council’s incremental and long-term reform and how we can make an impact. Mr. Rosen stated that Hill staffers said the House is apt to increase NCD’s numbers and maybe the Senate would equal that.

Mr. Rosen stated that he was happy that the Council is thinking about collaboration and has the ability to accept gifts.

Dr. Gould stated that the General Accountability Office (GAO) has taken a look at all the federal disability programs. They’ve issued a report and have been requested by both houses of Congress to provide testimony. He added that they are doing it on their own in the absence of any advice from the other entities such as the Congressional Budget Office (CBO) and the Congressional Research Service (CRS). He said that NCD staff are trying to provide them with the Council’s view on the programs and to try to dialogue with some of their key researchers and lead staff by sending them some of its material.

Ms. Martinez stated that she attended the Ticket-to-Work Panel in San Juan where someone from GAO was reporting on the Department of Education’s disability services. She stated that she would like to see people from the disability community, including the Council, collaborate, interact and share information for preliminary recommendations.

Mr. Frieden stated that he would like to see a law that would ensure infrastructure of training, recruitment, appropriate compensation, retention and so forth.

Ms. Gillcrist suggested the entire health care issues, especially since there is a shortage of nurses in the US.

Ms. Pound stated that she would like to see a health care report in 2007. Ms. Pound added that she always looked at health care as a personal issue. She suggested that the Council orient the health report toward what we can do to fix it legislatively. Perhaps the Council can include some of the issues surrounding the long-term care and health care worker shortages.

Mr. Frieden stated that support services labeled as health services become more expensive. He added that they become automatically subject to a prescriptive doctor-driven model, and they no longer become part of the infrastructure that people ought to expect - like sidewalks and transportation.

Mr. Rosen stated that he believes this Council is trying to build from where it is today by using these objectives to arrive at some point in 2008. He stated that the Council has not done a lot of public hearings because it wants to focus on solutions rather than just hearing about issues and problems. The multiple projects that are ongoing, such as the ADA Impact and Implementation Studies, and the employment project all have a lot of focus group and specific targeted discussion. He added the Council should think about how they can have public input in a very focused, specific way in 2008.

Mr. Rosen stated that Congress considers the Council as providing information for their informed determination. When the Council speaks about bringing people together there is a lot of interest and Congress feels there is enthusiasm for facilitating dialogue. This is how the agency received the additional $450,000 for its ADA implementation study.

Mr. Rosen stated that in terms of the ADA Implementation project the Council has gathered business owners and stakeholders together to let them know about accessibility.

All of the areas recommended by members were listed on flip charts and grouped according to issue and administrative categories. The list of the areas is attached. The members had the opportunity to vote on their three (3) highest priorities in the issue and administrative areas. The votes for the items in the administrative category are as follows: Legislative -28 votes; Reports - 25 votes; White House-15 votes and Resources-11 votes. Under the Issue category, the following votes were received: Legislative-33 votes; Partnerships-23 votes; Conference; 15 votes; Livable communities -12 votes and Choice -9 votes. It was the consensus of the members to combine Livable communities and Choice, therefore giving it a total of 21 votes, and thus it would be number three. So the top three in each category are as follows:

Administrative                                                               Issue
Legislative                                                                   Legislative
Reports                                                                        Partnerships
White House                                                                Livable Communities/Choice

In addition, the following areas were discussed or presented by members for the FY 2008 budget request:
1. Asset Development (from the FY 2007 request)
2. Report Implementation (from FY 2007 request)
3. ADA Seminar
4. Advisory Committees (public input)
5. Futures Conference/Forecasting conference
6. Housing
7. Personal Attendants
8. ADA Restoration Act, ADA Impact study, and long-term services and supports study (using these studies to review ways to impact legislation)

The consensus by members was for staff to review the areas, and discuss and develop a draft FY 2008 budget proposal for presentation to the Executive Committee with the draft to the full Council for approval during the July Quarterly meeting.

Mr. Frieden stated that the issues discussed today clearly indicate what the Council is trying to achieve. He complimented members on the ideas that don’t require a lot of resources. The board has come up with a work plan that is a practical plan given the realities of its budget situation and staffing. Mr. Frieden stated that the discussion around legislative activity by Council members is one that the Council is going to be looking forward to having a report back from staff about how that’s going to occur. He said that he would be glad to appoint a committee. Anne Rader has been appointed as principal liaison with Mr. Seifarth on legislative matters. Ms. Rader can advise about the extent to which the Council needs more committee support to develop the plan and the proposals for education and so on.

Mr. Frieden stated that he believes it is the job that will require a great deal of coordination among staff. He said that it is not the responsibility of one person. The legislative reviews need to be done by staff who were engaged in the report process and those who were married to the recommendations that were made. He said that it is not only the work of the policy staff, but that of the administrative staff as well in terms of ensuring appropriate support logistically to members who are coming out to engage with their legislators and to ensure appropriate communication support.

Mr. Frieden stated that he believes the Council has accomplished a great deal in their discussion and that it has a better understanding and opportunity to share together where they want to be as they proceed in order to feel like they really have achieved their goals. He said that members will be focused on the legislative outcomes and will want to be able to point to some actual language and laws that have resulted from Council reports.

UNFINISHED BUSINESS
None at this time.

NEW BUSINESS
None at this time.

ANNOUNCEMENTS
None at this time.

ADJOURNMENT
The meeting adjourned at 4:00 p.m.

ATTACHMENT

ADMINISTRATIVE AREAS

ISSUES