MINUTES
President’s Committee
for
People with Intellectual Disabilities
Quarterly
Committee Meeting
May 9, 2005
7th Floor
OPA Conference Room
Aerospace Center
901 D Street, S.W.
Washington, D.C.
ATTENDEES AT THE QUARTERLY MEETING OF THE PRESIDENT’S COMMITTEE FOR PEOPLE WITH INTELLECTUAL DISABILITIES (PCPID)
| PCPID Civilian Members: Madeleine C. Will, Chair |
PCPID Ex Officio Members: Theodora (Teddi) Fine |
PCPID Federal Staff:
Sally Atwater, Executive Director
Ericka Alston, Administrative Assistant
George Bouthilet, Ph.D., Research Director
Laverdia Roach, Special Assistant
Lena Stone, Program Specialist
Sheila Whittaker, Budget Officer
PCPID Invited Speakers:
John Hager
Assistant Secretary for
Special Education and Rehabilitative Services
U. S. Department of Education
Remarks: “The No Child Left Behind Act and People with Disabilities”
Shelley Brantley
Director for Persons with Disabilities
State of Florida
Remarks: “The Florida Freedom Initiative and People with Disabilities”
PCPID Guests:
Debra Cotter
Jody Force
Benny Howard
Julie Howard
Scott Knittle
Neil Lawhead
Susan Melecha
Jay Meyer
Robert Miller
Patricia Morrissey
Maggie Nygren
Richard Price
Darren Stoke
Scott Szymanski
Madeline Will, Chair, officially convened the quarterly meeting of the President’s
Committee for People with Intellectual Disabilities (Committee) at 3:00 PM
on May 9, 2005. The Chair announced that this was the first official quarterly
meeting of the Committee to be held by audio-conference call. Considering
the audio-conference call mode of the meeting, the meeting was convened for
a two-hour audio session rather than the usual two-day, face-to-face, meeting.
Thus, the agenda called for the meeting to be from 3:00 PM to 5:00 PM.
The Chair called for approval of the minutes of the last meeting and approval of the agenda for the current meeting. With a very brief discussion, a voice vote was taken on each of the documents. Each was approved unanimously.
The Chair introduced the first guest speaker, the Honorable John Hager, Assistant Secretary for Special Education and Rehabilitative Services, U.S. Department of Education.
The topic of the presentation by John Hager consisted of a review and an update on the status of the No Child Left Behind (NCLB) program. The presentation consisted of recent developments in the NCLB program concerning people with disabilities.
Current developments included the subject of flexibility being provided to States relating to the assessment of students with “persistent academic disabilities.” Originally, a 1% level of flexibility was provided to the States to take into account students with the most significant cognitive disabilities, but more recently an additional 2% level of flexibility to the States was added for the “gap” students with disabilities. States approved for using the flexible percentage rates may utilize alternative assessment tools for students identified with “persistent academic disabilities.”
Those pupils identified as falling in the group with “persistent academic disabilities” would not be counted in the States’ reporting. As a consequence, States that were approved would be less likely to be penalized as falling behind other States because of the existence of certain students with “persistent academic disabilities.” This permits States some flexibility for accounting students falling under the group being considered as functioning at the level of “persistent academic disabilities.”
Technical assistance is provided to States to help improve their assessment tools and accounting systems as it relates to a variety of pupils, but particularly students with disabilities. One of the purposes of the technical assistance effort is to help reduce the division between general education and special education in American school systems. States would less likely be penalized as falling behind simply because of the existence of certain students with disabilities, particularly those with cognitive or intellectual disabilities.
Following the presentation by John Hager, the Chair called for a question and answer period to permit members of the Committee to interact with the speaker.
Following the question and answer period, the Chair recommended to members that if they had additional questions they should submit them in writing through the Executive Director who would forward them to John Hager for follow up response. John Hager agreed to respond to all questions related to his presentation.
The Chair called upon the second guest speaker, Shelly Brantley, Director of Programs for People with Disabilities in the State of Florida. Ms. Brantley was asked to speak on the subject of the State’s dual waivers initiative, which has many promising aspects, not only for the State of Florida, but also for other States.
Shelley Brantley provided an update on the Florida Freedom Initiative and follow-through implementation on the dual waiver programs in the State of Florida. The Florida Freedom Initiative was designed to change how people with disabilities maintain long-term support while it sought to break the poverty cycle for people with disabilities and help them to achieve self-determination.
The primary goals of the Florida Freedom Initiative are to expand educational opportunities, promote home ownership, integrate people in the workforce, expand transportation options, promote full access to community life and increase access to assistive technology.
Shelley Brantley stated that the Florida Freedom Initiative combines the Medicaid waiver with the Social Security waiver authority. The Initiative allows individuals with disabilities to cash out the funding they would have received to pay for services through the traditional system, or fee-for-service, so that people with disabilities may have the freedom to direct their own long-term care needs.
The Florida Freedom Initiative is a consumer-directed care program. The intent is to break some of the financial disincentives that force impoverishment on persons with intellectual disabilities and other developmental disabilities. Now, they can rent or buy a home or lease or purchase a car with their cash budget. The Initiative also waives the requirement for the continuous medical review to determine that the person is disabled, which has been a barrier for many persons with intellectual disabilities and other developmental disabilities.
The Florida Freedom Initiative includes education and training in conjunction with the Center for Self-Determination. Florida has discovered that a considerable amount of training is needed before individuals are ready to do some innovative things and take advantage of their broad flexibility. In the process, the State has discovered that a number of families and persons with disabilities were reluctant at first. Many people have been forced into impoverishment, Florida has had to resort to providing technical assistance to families and to individuals with disabilities.
For persons with disabilities who are currently employed, Florida has found that many persons are still struggling with unemployment issues. Currently, the employment effort is being limited to the original group, comprised of about 1,500 persons with developmental disabilities. Employment has been a challenging area.
Presently, Florida is working with the Center for Medicare and Medicaid Services to expand consumer-directed care as an option for everybody in community-based waiver programs serving people with developmental disabilities. In the long-term, Florida will seek to expand the Florida Freedom Initiative option and the dual waiver option, to all individuals with intellectual disabilities and other developmental disabilities.
Following the presentation by Shelley Brantley, the Chair called for a question and answer period to permit members of the Committee to interact with the speaker.
After the question and answer period, the Chair recommended to members that
if they had additional questions for Shelley Brantley they should submit them
in writing to the Executive Director who would forward them to Ms. Brantley
for reply. Shelley Brantley agreed to respond to all questions based on her
presentation during the conference call.
Next, the Chair called for summaries and updates on the five focus areas of
the Committee: (1) Comprehensive Health Care; (2) Dental Care; (3) Aging and
Housing; (4) Direct Support Professionals; and (5) Emergency Preparedness.
The first presenter was Brenda Leath who provided a summary and an update on the focus area of Comprehensive Health Care and Long Term Care for people with intellectual disabilities. Ms. Leath’s presentation combined the issues of both physical health care and mental health care for people with intellectual disabilities.
Brenda Leath referred to the Surgeon General’s Report on Health and Mental Retardation as the foundation for the work to be undertaken in the focus area. What the focus area group needs to do now is to come together and crystallize some of the recommendations presented in the Report and to present them to the Committee. Brenda Leath admitted that this focus area is a very large undertaking for the Committee since the Committee needs to consider the total life span of the individual in relationship to both independent living and to long-term care.
To determine the level of support for the focus group on Comprehensive Health Care, the Chair requested the names of the Committee members working in the focus area. Besides herself, Brenda Leath responded with the names of the other current members: Vijaya Appareddy, Kenneth Lohff, Alvaro Marin and Lon Solomon.
The second presenter was James Brett, who presented a summary and an update on the focus area of Dental Care for people with intellectual disabilities. The dental care focus area includes input from a number of key resources and specialists in the field of dentistry and disability.
James Brett stated that the focus area of dental care was moving along very rapidly. Of the five focus areas, dental care was considered the most advanced for announcing its specific recommendations and ready for forwarding them to the Secretary and the President, along with a formal statement for implementation. No legislation appeared necessary. However, perhaps some regulatory (administrative) changes may be needed.
James Brett announced that a letter for action by the Administration on dental care for people with intellectual disabilities has been forwarded to the Executive Director.
The third presenter was Gene Stallings, who provided a summary and an update on the focus area of Aging, Housing and Long Term Care for people with intellectual disabilities. The situation he presented appeared quite grave for aging parents of people with intellectual disabilities, specifically as applied to housing for people with intellectual disabilities after the aging parents or caregivers are deceased.
Gene Stallings compared opportunities for housing and care provided to convicted felons and to people who are voluntarily or involuntarily homeless. He felt appalled at the billions of dollars the government is willing to spend on these two groups. Yet, little or no assistance or security is assured to people with intellectual disabilities after their aging parents die. He queried: What can they do for themselves and where can they go to live? Nursing homes don’t seem to be the answer. Nursing homes don’t seem to want them.
Gene Stallings suggested some possible solutions to resolving the issues posed by aging parents and caregivers of people with intellectual disabilities. He presented proposals on what the government could do and what individual parents could possibly do.
Perhaps some demonstration grants funded by the government for housing development and support in each of the States as one possible option; or parents taking out life insurance policies to make existing residential facilities as beneficiaries to assure continued housing for their aging offspring with intellectual disabilities after they are deceased. Both options require time and effort which is limited for current aging parents and their aging adult children with intellectual disabilities.
The fourth presenter was Karen Staley, who provided a summary and an update on the focus area of Direct Support Professionals for people with intellectual disabilities. Ms. Staley discovered that there were a number of recommendations made by the President’s Committee on Mental Retardation in 1995 and 1997 addressing the same concerns as the current focus area of the Committee. Yet, no implementation of these recommendations occurred then and she wondered what needed to be done to ensure action now.
The Chair responded that the recommendations to be developed by the focus area group needed to be stated in language and in a manner that would increase the assurance that the recommendations would be implemented. Rather than simply state the recommendation, there is a need to show how the recommendation may be implemented.
The fifth presenter was Kathy Hargett, who provided a summary and an update on Emergency Preparedness for people with intellectual disabilities. Ms. Hargett expressed frustration with the various Subcommittees of the Interagency Council on Emergency Preparedness for People with Disabilities. People with intellectual disabilities appeared to be ignored in most of the subcommittee deliberations and planning for emergency preparedness.
Kathy Hargett noted that the Subcommittee on Emergency Preparedness chaired
by
Dr. Margaret Giannini represented only one of eight subcommittees concerned
with planning for people with disabilities. That may be the only subcommittee
that may entertain possible consideration for people with intellectual disabilities.
Kathy Hargett stated that she had further frustration in not being able to obtain guidance and technical assistance from the New York City group who helped planned for Y2K and was able to respond so effectively for people with disabilities during and after 9/11. They appeared interested, but have not been responsive to her request for assistance. It is not known why, but perhaps they do not desire to reveal their emergency preparedness plan, or something similar, with the general public for fear that the plan may fall in the hands of some terrorist group.
The Executive Director announced that it was 5:00 PM and that the two hour planned meeting had reached its scheduled end; but the members may wish to continue for a little while longer if the Chair so desired. As a consequence, the Chair entertained several additional comments, questions and proposed actions to be undertaken by the various focus groups or the Committee as a whole. Thereafter, the Chair sought to close the meeting in an orderly manner. After receipt of final items, the Chair called for a motion and a second to adjourn the audio- based conference call meeting. Upon receipt of the motion and a second, the Chair officially adjourned the meeting at 5:30 PM on May 9, 2005.
PROPOSED ACTION ITEMS FROM THE TRANSCRIPTS
Page numbers from the transcripts appear in front of each action step. This may be useful for purpose of reference. The page numbers are followed by statements addressing action items, which may be either quoted or paraphrased from the transcripts. The action items are presented in sequential order as they appear in the transcripts. There are a total of 23 action items appearing below. Individuals who are responsible for an action item are identified by either name or position title.
18-The Chair closed further Q/A’s directed to John Hager, the first speaker: Participants were requested to send additional Q/A’s for John Hager through the Executive Director for follow-up response.
31-The Chair closed further Q/A’s directed to Shelley Brantley, the second speaker: Participants were requested to send additional Q/A’s for Shelley Brantley through the Executive Director for follow-up response.
36-The Chair suggested to Brenda Leath that she consider the matter of insurance at the State and national levels, as related to long-term care.
42-Through the suggestion of Teddi Fine, the Chair requested that the Executive Director inquire into current plans of Dr. Margaret Giannini for the proposed content of the final agenda of the White House Mini-Conference Aging and Disability, particularly as it applies to the subject of mental retardation or intellectual disabilities. Special concern exists about the subject of care for aging people with intellectual disabilities and their aging parents and caregivers.
44-Teddi Fine stated that Committee members could nominate themselves for participation in the Mini-Conference on Aging and Disability. The current deadline for self-nominations was given as June 1, 2005. (Note: Teddi Fine made the announcement at the meeting on May 9, 2005, giving about three weeks notice to the Committee members to nominate themselves.)
50- Karen Staley noted that in the 1995 and 1997 reports of the President’s Committee on Mental Retardation (former name of the President’s Committee for People with Intellectual Disabilities) recommendations were prepared relating to direct care professionals, but no follow-up implementation of these recommendations ever took place. In response, the Chair suggested to Karen Staley that when she develops her recommendations, she include some specific approaches for implementation of the recommendations to improve consideration by the Administration. The Chair felt that recommendations should not stand alone, but always include some suggested approaches for implementation.
56-Milton Aponte urged that a task force be appointed to look into issues pertaining to emergency preparedness for people with intellectual disabilities. The Chair suggested that Milton Aponte send his proposal, in writing, to both the Chair and Kathy Hargett, who has been working in the area of emergency preparedness.
56-Milton Aponte stated that he heard a radio news release regarding the U.S. Department of Homeland Security, asking Congress to set up a committee or task force to look at planning for emergency preparedness for people with disabilities. He stated that he would be happy to send a copy of the news release to the Chair. The Chair responded with the suggestion that Milton Aponte share a copy of the news release with Kathy Hargett as well.
58-In response to the concern expressed by Kathy Hargett, the Chair recommended that Kathy Hargett follow-up on her suggestion to encourage Special Olympics to apply for a grant to study emergency preparedness for people with intellectual disabilities.
69-The Chair asked Gene Stallings to prepare a letter for the consideration of the President, and/or possibly Congress, that there is an emerging national crisis on housing and staffing for aging people with intellectual disabilities after their aging parents or caregivers are deceased. (Note: The Committee, as a Federal Advisory Committee, is not permitted to contact Congress directly under the provisions of FACA. However, as a private citizen, Mr. Stallings may contact members of Congress.)
75-The Chair suggested to Vijaya Appareddy that the name change from mental retardation to intellectual disabilities should be conveyed to key officials of the American Psychiatric Association (APA), so that the new name could be considered in the upcoming revision of the APA Diagnostic and Statistical Manual.
77-Through the suggestion of Dr. Vijaya Appareddy, the Chair requested that the Executive Director arrange for an invitation of key officials from the American Psychiatric Association, particularly those with primary responsibility for revising the APA Diagnostic and Statistical Manual, to the next quarterly meeting of the Committee. The purpose of the invitation is to provide an opportunity to have a joint review and discussion on proposed changes in the definition and levels of mental retardation or intellectual disabilities as may be specified by the American Psychiatric Association.
77-The Chair suggested that (1) the Executive Director contact the White House Office of Personnel and inform the exiting members of their official status, either final termination as members, or their reappointment as a member on the Committee; and that (2) the Executive Director inform members of the Committee of an appropriate date for the next quarterly meeting. It would be desirable if these actions could be completed as early as possible.
78-The Chair suggested to members who are concerned with their own reappointments or replacements that they should contact Laura Keener at the White House Office of Personnel for information and possible follow-up action.
79-The Chair recommended that James Brett take additional steps in the development of the focus area of dental care since that focus area is in a relatively advanced state. These steps would include forwarding a dental care brief to the Executive Director for appropriate review and possible follow-up action by the Administration.
79-The Chair asked to Brenda Leath and Karen Staley to get together with the Chair, through a conference call, to discuss the possibility of obtaining technical experts for their focus areas, respectively, Comprehensive Health Care and Direct Support Personnel.
80-The Chair recommended to Gene Stallings that he explore and sit down with some experts on the subject of aging parents and aging people with disabilities and formulate a plan. The plans should consist of a list of issues and recommendations pertaining to aging parents and aging people with intellectual disabilities. (Gene Stallings is to submit his plan to the Committee for review and discussion before the next meeting.)
80-The Chair recommended to Kathy Hargett that she begin developing a plan for emergency preparedness for people with intellectual disabilities, in writing, that could become an official policy brief to be forwarded to the Secretary and the President for their consideration and possible action. (Kathy Hargett is to submit her plan or proposed policy brief to the Committee for review and discussion before the next meeting.)
81-Kathy Hargett has expressed special concern to the Chair pertaining to the role of The Arc and the AAMR in planning for emergency preparedness for people with intellectual disabilities. Ms. Hargett has attempted to obtain information from both national organizations on her own but neither has been responsive to the Committee as of the date of the meeting (May 9, 2005).
82-Vijaya Appareddy inquired from the Chair and Kathy Hargett on what FEMA may be doing in planning for emergency preparedness for people with intellectual disabilities. To date, no information is known if there exist any FEMA plans for people with intellectual disabilities. Kathy Hargett is to determine if FEMA has any emergency plans to assist people with intellectual disabilities.
83-Kathy Hargett stated that various States have plans for emergency preparedness for people with disabilities, but none are known to her to have specific plans for people with intellectual disabilities. (For example, the State of Florida has plans in the event of hurricanes and the State of California has plans in the case of earthquakes, but it is not known if they include people with intellectual disabilities.)
84-The Chair inquired from Kathy Hargett about plans by the Administration on Developmental Disabilities (ADD) for emergency preparedness for people with intellectual disabilities. Kathy Hargett indicated that in a communication with the Director of ADD, it has been suggested that the focus area seems to have been overlooked by ADD at this time. There is, however, the possibility that ADD may pick up on the focus area following further collaboration between PCPID and ADD.
85-Michael Rogers suggested to Kathy Hargett that there is need for a Booklet on Emergency Preparedness for People with Intellectual Disabilities. Kathy Hargett acknowledged such a need. (It is suggested that there is the possibility that a Booklet may be considered as a recommendation by the focus area group on emergency preparedness for people with intellectual disabilities.)