National Council on Disability (NCD)
Quarterly Meeting
January 12-14, 2009
Scottsdale, Arizona

Monday, January 12, 2009

Council Members present:

John Vaughn, Chairman; Chad Colley, vice chairperson; Pat Pound, vice chairperson; Linda Wetters; Lisa Mattheiss; Cynthia Wainscott; Marylyn Howe; Kathy Martinez; Anne Rader; Victoria Carlson; Lonnie Moore; Dr. Robert Davila;

Staff present:

Mike Collins, Executive Director; Joan Durocher, Senior Attorney Advisor; Lisa Grubb, Special Assistant; Julie Carroll, Senior Attorney Advisor; Anne Sommers, Legislative Affairs Specialist; Mark Quigley, Director of External Affairs

Call to Order and Welcome - John R. Vaughn, NCD Chairperson, opened the meeting at 8:30 a.m.  He noted that members had received the quarterly meeting agenda prior to the meeting and unless there were any changes members wished to add, that a
motion to accept the agenda was in order.  Victoria Carlson then moved that the agenda as presented be adopted and Anne Rader seconded the motion which was adopted unanimously.

A field trip is planned later in the afternoon for council members and staff sponsored by the Arizona Bridge to Independent Living and the Statewide Independent Living Council.

The council members and NCD staff then introduced themselves, as did the 20
guests in the audience.

Tony DiRienzi, executive director of the Arizona Statewide Independent Living Council, welcomed the Council to Arizona. 

In his welcoming statement, Mr. Vaughn noted that the National Council on Disability is about promoting programs, policies, practices and procedures that help ensure that people with disabilities enjoy full inclusion into all aspects of society.  “Part of the reason why we travel around the country to hold our meetings is to be in the communities and reach out and touch as many folks with disability and the stakeholders to receive their input.  One of our primary mandated responsibilities each year is to prepare for the president and Congress an annual progress report.  For this report, our charter requires us to reach out to persons with disabilities and stakeholders, and identify those issues and emerging trends that are happening around the country.
“So we thank you for being here to provide us with your input.

Approval of minutes of October 6-8, 2008 quarterly meeting in Kansas City, MO.
Motion: Pat Pound moved to approve the July 14-16, 2008 Quarterly meeting minutes.  Chad Colley seconded the motion.  The motion passed unanimously.

Council member reports: The Chair asked members to provide their reports by noting, "Between our quarterly meetings, we work as a council through the monthly teleconference meetings of our 9, very active standing committees.
But our members also have other things they are involved with, and this is an opportunity for our members to take a few minutes to share with us about what they've been up to besides being on numerous NCD conference calls."

Chad Colley is active in many veteran issues; one in particular is a disabled veteran’s sports clinic, which takes place each year in Colorado.  At the request of the Veterans Administration and the Disabled Veterans Administration, Mr. and Mrs. Colley will be presenting a seminar to recognize the needs of spouses, and to discuss relationship issues following injury.

Pat Pound authored a white paper for the Open Doors organization out of Chicago.  It was a summary of their Universal Design in Airports conference.

Lonnie Moore writes and updates policy for the Army Warrior transition units so it can better provide services, care and transition for our wounded soldiers returning from Iraq and Afghanistan as well as those injured or ill stateside that need long-term case management.  He is also continuing to serve for the Secretary of Veterans Affairs, Iraq and Afghanistan Service Members Families and Survivors Advisory Committee, traveling around the country, speaking to consumers and making recommendations to the secretary of the VA on transition and care within the VA system.  Moore also stays busy with NCD work as well as tending to his family and his 9‑month‑old son.

Katherine McCary is a new Council member from Richmond.  McCary is Chair of the US Business Leadership Network (USBLN), a business organization of more than 5,000 employers who get together and speak business-to-business on the business imperative of including people with disabilities in the workforce and marketing to them as customers.  The USBLN is creating a certification program for companies that are owned by people with disabilities.  July 2009 is the target completion date for the program.  McCary also runs the disability program at SunTrust bank.  Through her work with SunTrust, she created a quarterly conference call called Dialogue on Disability, where disability committees throughout 14 SunTrust councils can share best practices.

Victoria Carlson noted that she will be attending the upcoming 2009 Centers for Medicare & Medicaid Services (CMS) Money Follows the Person (MFP) Conference in Baltimore and she will discuss with the council at the next meeting.  Carlson echoed the sentiments of Mr. Colley in regards to the needs of the family unit when a family member has a disability.  She has seen this so often when working with families dealing with multiple sclerosis.  She noted, “Disability affects the individual, but it also almost more so, greatly affects the families because they don't know how to deal with it, because the attention all goes to the one with the disability.”      

Tony Williams is a new Council member from Clyde Hill, Washington.  Upon being appointed to the Council, Williams has been contacted by many people in his community.  A meeting is confirmed with Mark Brenman, the head of the Human Rights Commission from the state.  Williams is also involved in fundraising activities and is very active with his family.

Lisa Mattheiss attended the TASH annual conference in Nashville on behalf of the Council, paying special attention to the issue of restraints and seclusion that were addressed during the conference.  The Civil rights committee continues to discuss restraints, seclusion, segregated classrooms and behavioral supports for kids with disabilities in the private and public facilities.  Mattheiss’ personal travels over the holidays provided her the opportunity to see how the state of Ohio interprets certain laws and policies relating to the elderly.  Mattheiss updated the Council on the Daniels injunction, which has prevented the state of Tennessee from requalifying certain people with disabilities who have once qualified for SSI and/or Tennessee's version of Medicaid.  This week the injunction was lifted and approximately 150 to 180,000 people are now at risk of going back through the requalification process and losing their health care coverage.  Unfortunately, Mattheiss’ daughter suffered a broken leg and is undergoing treatment at Vanderbilt University.  Professionally, the ministry in which the Mattheiss family is involved will be moving to a new location.

Marylyn Howe is one of the cofounders of the Association of Late Deafened Adults, which recently celebrated its 20th anniversary in October in Chicago where the organization was actually started.  Howe did a plenary about the genesis of the organization, and why there is such an organization Howe shared with the Council the advancement in technology for the deaf and hard of hearing population.  On a personal note, Howe and her husband have been working hard to assist their son in completing his college applications.

Robert Davila was invited to participate in a conference hosted by the Department of Health and Human Services (DHHS) related to employment of people with disabilities and designed to help employers determine how best they can support people with disabilities.  Davila was appointed by the Secretary of DHHS to serve on the advisory board to the NIH National Center on Deafness and Other Communicative Disorders.  The Center is devoted entirely to research and development related to hearing, hearing restoration, hearing loss prevention, and hearing loss accommodation.  Davila has also been invited to be the keynote speaker at the Asian Pacific Conference on Education of the Deaf in Bangkok, Thailand.  He has been volunteering in the Far East for over 30 years, especially in Japan, the Philippines and China.  Dr. Davila plans to retire on December 31, 2009.

Heather McCallum is a new Council member from St. Simons Island, Georgia.  McCallum is a busy parent, but prior to becoming a parent, she was busy helping an organization for people who have hearing loss, through early education, early detection of hearing loss, and assisting parents who have children with disabilities.  McCallum was a national role model as Miss America approximately 12 years ago.

Anne Rader works on public health for vulnerable populations as a member of the health team for Booz Allen and Hamilton, a management consulting firm.  In December, Booz Allen and Hamilton became the primary sponsor of a conference on emergency preparedness and people with disabilities.  Last month an article on the California wildfires and the use of an all-hazards approach to emergency preparedness in public health planning authored by Ms. Rader was published in the San Diego "Business Journal.”  Personally, she is in the process of planning her third ski trip to Vail.

Kathy Martinez is based in Oakland, California and works for the World Institute on Disability (WID), which celebrated its 25th anniversary with a wonderful celebration and fundraiser by the entertainers Blind Boys of Alabama.  WID has been heavily consulted by various agency reviewers for the transition team in the areas of Social Security and the Department of Labor.  Martinez also serves on the U.S. Institute of Peace, another presidentially appointed and Senate confirmed group.  The US Institute of Peace is looking at the issue of disability and conflict.

Linda Wetters is from Columbus, Ohio and recently retired from the state vocational rehabilitation system.  Following her retirement, she was hired to complete a short‑term project with the state vocational rehabilitation system to look at finding other people or organizations within the state that could help Ohio get the federal match dollars for vocational rehabilitation that the state was not able to match through its general budget.  Wetters was asked to serve on a special program design committee of the Center on Vocational Alternatives in Columbus, an organization that has a national reputation for working with people with severe mental illness.  Ms. Wetters has devoted much time lately to the completion of NCD’s employment committee transition report, and follow-up to that report. 

Chairperson’s Report -
Adoption of executive committee meeting minutes
Mr. Vaughn noted that the executive committee met on September 18, 2008, November 10, 2008 and December 3, 2008 and the meeting minutes were included in the meeting materials.

Linda Wetters Moved and Kathleen Martinez seconded the motion for acceptance of the September 18th, 2008, and acceptance of the December 9th, 2008, minutes of the executive committee and the ratification of any actions of the executive committee taken during those meetings.
The motion carried unanimously.

*Note: The minutes of the Executive committee meeting for November 10, 2008 were inadvertently excluded from the meeting packet and they were distributed this morning for member review.  On Wednesday, January 14, the motion to adopt these minutes and ratify the actions of the executive committee was made by Victoria Carlson and seconded by Pat Pound and the motion carried unanimously.

Chairman Vaughn updated the Council on the following meetings and activities:
He met with Kareem Dale of the Obama transition team on November 25 and answered questions concerning the operation and organization of NCD, the budget, our elimination of the federal advisory committees, issues with FEMA and current projects. 

Mr. Vaughn encouraged members to schedule airfare early to maximize cost savings and be assured of good flight options.  The tickets we purchase are fully refundable so they can be cancelled with no penalty. 

Upcoming meetings scheduled include:

Washington D.C.
March 30 – April 1, travel dates: March 29, and afternoon of April 1:
 
Minneapolis
July 20 - 22, travel dates: July 19, and afternoon of July 22

Washington D.C.
July 2010 in conjunction with the National Summit on Disability Policy July 28 and 29, 2010.

Mr. Vaughn lead a discussion of upcoming meeting dates and the consensus of the Council was to hold a meeting in Nashville, Tennessee in late October, 2009 and meet in Houston in late January, 2010.

Council members are encouraged to reflect on a possible location for the April 2010 meeting which will not be held in Washington D.C. because of the 2010 National Summit on Disability Policy being held there in July.

Transparency of executive committee meetings:

Mr. Vaughn reminded members that Mike Collins is notifying all members of executive committee meetings and all members are encouraged to join in on those calls as a number of members have done.

Mr. Vaughn then noted activities he has been involved in since the Kansas City meeting:

-Orientation for new members via teleconference calls took place in October and November.

New members are encouraged to attend all committee meetings to help them determine which committees they want to join on a permanent basis.

On committee meeting attendance, Mr. Vaughn encouraged members to work to attend their committee meetings since we have reduced the number of members on each committee.

-Mr. Vaughn attended the November 19, 2008 meeting of the President's Committee on Persons with Intellectual Disabilities, in which they finalized their report to the President on employment of persons with intellectual disabilities.  NCD is an ex-officio member.  Milton Aponte had served as our representative and Mr. Vaughn requested that any member wishing to fill this slot should contact him.

-Mr. Vaughn noted that he serves on a NIDRR-funded grant through Louisiana State University as a member of an advisory committee on emergency preparedness and transportation.  This advisory body met on November 14 in Washington D.C. and the grant covered his travel expense.  The study being conducted will be completed in 18 months. 
 
-Mr. Vaughn presented at the U.N. Day of Persons with Disabilities on the Global Initiative on Inclusive Communication Technology in New York.  He noted that his remarks were summarized in the recently distributed NCD newsletter. 

-Mr. Vaughn noted that during his visits to Washington D.C. he has been trying to meet with many of our stakeholders and try to reach out to them for their input and encouragement to their constituents to attend our quarterly meetings and participate in our public consultations.

Mr. Vaughn noted that, in the spring, he hopes to get to Washington to meet newly appointed agency heads and develop a good working relationship with the new administration.

Finance Committee Report - Chad Colley, Committee Chair and Michael Collins, Executive Director

The finance committee chair reported that the council completed the first quarter of the fiscal year in strict adherence to the parameters required for federal agencies that are operating under a continuing resolution.  Mr. Colley provided updates and facilitated discussion on the following subjects:

Review of 2008 budget and the fact that we spent almost all of our funds.
We closed out the year with $8,000 unallocated, we spent 99.999976%.
The performance and accountability report, the most recent submission request from OMB for our 2010 budget, was completed per instructions.
Preparing to operate for the balance of the fiscal year under the continuing resolution if necessary.
Audit report: no reportable deficiencies.
At our Seattle quarterly meeting, the Council set five goals for utilizing surplus funds for fiscal year 2008 and the following were completed:
2010 Summit on Disability Policy conference contract and the seed funds for that conference--Invested $120,000; remaining $180,000 to be allocated over the next two fiscal year budgets.
Replacement of the NCD computer servers.
Initiation of a policy paper on the status of federal hiring and employment practices of persons with disability.
The following items had been approved for use of FY 2008 end of year funds:
New Member Orientation - As the new members were not confirmed until October 7, no orientation was held at the end of the fiscal year.  For the three new members confirmed, they received their orientation through teleconferences with the Chair and Executive Director.
Staff retreat - this activity was postponed until a later date.

Mr. Colley then discussed the status of the Post-Katrina Act FEMA funds (account 842X), and he noted there is currently a balance of $188,000 and the Homeland Security Committee is looking at options to utilize these funds.  Most of the $112,000 funds expended from this account have been for the emergency preparedness study still being worked on.  The balance of funds has been used for member salary and travel in connection with doing committee business in this arena.  
Motion: Chad Colley moved to accept and adopt the finance committee report as presented.  Victoria Carlson seconded the motion.  The motion passed unanimously.

Executive Director’s Report - Michael Collins
Mr. Collins provided the Council a summary of accomplished NCD Goals and outcomes for 2008:

Mr. Collins provided updates and facilitated discussion on the following subjects—

The work on the Progress Report has been turned over to the NCD staff policy team
NCD staff has been split into two operational teams, which have begun meeting periodically:
Policy
Administrative

Lease renewal options were discussed, including the news that we would not be forced to move in the fall of 2011 when our current lease expires.

Annual independent audit of NCD has been completed and findings were positive.  Executive Director is continuing to examine alternate fiscal support options.

Mike chaired the October meeting of the National Fire Protection Association (NFPA) disability task force which Pat Pound also immediately following our Kansas City report.

Staff participation on other boards:
Julie Carroll, Seeing Eye board of directors
Joan Durocher, American Bar Association (ABA) subcommittee

Introduction of NCD’s new staff, Anne Sommers, Legislative Affairs Specialist

Proposal has been submitted to the National Council on Independent Living (NCIL) to have Joan and Kathy Martinez present on UN Convention at the annual NCIL conference in Washington.

Mr. Collins expressed gratitude to the Arizona Bridge to Independent Living (ABIL), and to the Statewide Independent Living Council (SILC) of Arizona, and their staff and volunteers for their assistance and support of NCD during the quarterly meeting. 

Public Comment Session – Moderated by Chad Colley, Vice Chairperson
Public comment was provided on the following subjects.
Parent support groups
Arizona’s Governor’s Council – 5 year plan
Transition
First responder’s smart card program
Employment best practices symposium
Department of Transportation and Paratransit services
Multi-chemical sensitivity
Electrochemical hyper-sensitivity
Cal/Med Program
Medicaid Infrastructure grants
Accessible currency
Differences between NCD and Access Board

Chairman Vaughn recessed the morning session at 12 noon.  The meeting was called back into session at 1:30 p.m.

International Committee Report – Kathy Martinez and Victoria Carlson, Co-chairs and Joan Durocher, staff

Ms. Martinez provided updates and led the discussion on the following subjects.
Need for NCD to renew United States International Council on Disabilities USICD membership, which will be voted on by the council during the meeting.

A review of first two committee meetings and committee structure:
One area of interest to the committee is the accessibility of U.S. Embassies and foreign assistance programs that regard, in 2010, the committee may want to look at the accessibility of the U.S. agency for international development programs.  In 1997, they developed a policy where they said all programs and services should be accessible, and we really want to look at how disability is being included in international development activities.

Mr. Eric Rosenthal, Executive Director of Mental Disability Rights International, joined the meeting via telephone.  He noted that MDRI is an international human rights organization working for the rights of people with disabilities and he is also vice‑president of the USICD youth committee and vice‑president of USICD and head of the committee that is bringing different disability groups to work together on supporting ratification of the convention.

Mr. Rosenthal then explained the treaty ratification process.  He noted that the President has to first sign the treaty and then submit it to the U.S. Senate for ratification.
 
See the Appendix for a summary of the speaker’s presentation.

After the presentation, the Council spent an extensive amount of time discussing whether to send a letter to the President of the United States urging his signature on the Convention on the Rights of Persons with Disabilities, as well as whether to urge the President also to work for ratification by the Senate.

Motion: Pat Pound then moved that NCD write President Obama encouraging him to sign the UN Convention on Persons with Disabilities and to work toward its ratification in the Senate.  Chad Colley seconded the motion.
 
Pat Pound moved to amend the motion adding that a copy would be sent to the appropriate Chairs in Congress.  Chad Colley accepted the amendment as presented.  Discussion ensued. 

When Kathy Martinez called for the question, member Lonnie Moore made a motion to table the motion on the floor until Wednesday, January 14, 2009.
Anne Rader seconded the motion.  The motion to table passed with 8 votes in favor and 6 against.

John Vaughn noted that he will send an E-mail or have hard copies prepared immediately for members, for the following 3 documents:

A copy of the NCD letter originally sent on March 5, 2007 to President Bush urging him to sign the UN convention.
 
The letter NCD received from the State Department as to why they are not encouraging the President to sign the UN Convention.

“Finding the Gaps:  A Comparative Analysis of Disability Laws in the United States to the United Nations Convention on the Rights of Persons with Disabilities” and the link  on NCD’s website to this document.

Members are encouraged to review these documents in preparation for the discussion on Wednesday. 

Chairman Vaughn recessed the public meeting at 2:30 p.m.

Tuesday, January 13, 2009

All members and staff were present from yesterday.

Call to Order and Welcome - John R. Vaughn, NCD Chairperson, reconvened the meeting at 8:30 a.m. and he reviewed the agenda for the day and noted that we will have five committee reports today and hear public comment and conclude the day with a public reception. 

Homeland Security Committee Report – Pat Pound and Chad Colley, Committee Co-Chairs and Martin Gould, staff, via telephone

The Committee’s discussion and meeting report covered the following topics:
Elizabeth Davis and her colleagues’ work has proceeded on schedule.  During the past three months, Elizabeth and her research team have produced the following chapters: Working with Voluntary Organizations, and Implications of Research.  Upcoming writing and submissions for Elizabeth and her research team include the following work: a chapter on Initiatives, a chapter on Policies (due in December), and one on Interventions (due in January), a final annotated bibliography compiled (January), appendices finalized (due in February), and a complete first draft report submitted to NCD (in February).  [Note: A copy of the report outline was included in the Board notebook.]

NCD's Homeland Security Committee is expecting its research contract with Elizabeth Davis and Associates to be completed, and a final report delivered to NCD, in February 2009.  Several levels of agency review, external review and a professional edit will then be required.  A final report should be available for public issuance in May of 2009.

In lieu of a typical NCD report release, the Homeland Security Committee may consider a combined report release and congressional briefing on Capitol Hill.  This event could be a one-half day event and could be co-hosted by the Congressional Disability Policy Caucus and Congressional Livable Communities Task Force.  Invitees would include the public-at-large, and would specifically target congressional staffers from the range of committees and subcommittees that are responsible for homeland security issues, disability matters, etc.  The event could also possibly offer a lunch at the end, and possibly include a "display" of best-practices.

On December 1st, NCD’s Homeland Security Committee provided written comments to FEMA on its draft “Comprehensive Preparedness Guide-302: Household Pets and Service Animals.”

On Tuesday, December 16th, NCD Homeland Security Committee and NCD staff met with CRCL staff (Gordon, Parsons) and FEMA staff (Daniels) to discuss a range of issues.  CRCL staff provided an update on their work in the area of long-term recovery, and ideas for the transition to the incoming Administration vis-à-vis the ICC.  FEMA staff provided an update on work involving the Gulf Coast hurricanes, more recent natural disasters and future directions for the office of FEMA Disability Coordinator.

Over the past several months, NCD has participated in the development of National Disaster Housing Strategy Annex #3.  On Wednesday, November 26th, NCD received a request from FEMA for a review of draft Annexes #1, #2, #3, #4, #5 and #7.  On December 2nd, NCD’s Homeland Security Committee provided five pages of feedback to FEMA based on its review of the six Annexes listed above.

During its most recent December 12th meeting, NCD Homeland Security Committee members identified several possible options for submission by NCD to the incoming Administration regarding how to target and use some of the proposed economic stimulus project monies.

NCD attended the Interagency Coordinating Council Points of Contact on Thursday, December 4th, 2008 from 1:30 – 3:00 p.m.

Homeland Security Committee Presenter:
Trent Hamblin, Director of Operations, UTM Event Management & RTW Management
Trent has been involved in passenger transportation for the past 16 years.  During that time he has worked to provide accessible transportation at the 2002 Olympics and Paralympics; created the paratransit division for Utah Shuttle Services; and, has been “on the ground”  providing wheelchair transportation services and supports during Hurricanes Katrina, Rita, Dean, Dolly, Edward, Gustav, and Ike.

See the Appendix for a summary of the speaker’s presentation.

Legislative Committee Report – Tony Williams and Kathy Martinez, Co-chairs, and Anne Sommers, staff
The legislative Committee Co-Chairs briefly discussed the goal of the committee to do more Congressional outreach in the New Year.  Members will be assisted in this outreach via Congressional resources and talking points developed by staff member Anne Sommers and through in-district meetings, Ms. Sommers will assist in arranging for Council Members to be introduced to their local Congressional office.  Linda Wetters shared the history of the committee regarding its role in relation to other committees and requested that the legislative committee continue to discuss that potential for interplay, including how the committees might work together when a reauthorization is in play on key disability legislation.  Chairman John Vaughn suggested reviving the committee’s history of providing conference calls with Congressional staffers regarding disability legislation currently under consideration.  Several Council Members expressed an interest in arranging for Hill visits or a Hill event around the publication of the Progress Report to occur in March at the next quarterly meeting.

Action item: Kathy Martinez requested that staff provide council members with a listing of which committees their local Congress members serve on.  Mike Collins said he will have that provided as well as introduce members with staff in their local Congressional office.
 

Employment Committee Report - Linda Wetters and Lonnie Moore, Committee Co-Chairs and Joan Durocher, staff

The committee reported on the follow-up meeting held on December 4 with representatives from the Rehabilitation Services Administration (RSA).  The purpose of this meeting was to share with RSA staff the recommendations from the report on Transition and Vocational Rehabilitation (VR).  Linda Wetters, Lonnie Moore, John Vaughn, Joan Durocher and Mike Collins attended this meeting for NCD.  RSA staff had questions about some of the recommendations, particularly as related to the need for increased funding for transition services.  This report had been shared with RSA for comment and some changes were incorporated based upon RSA input.  Most likely the timing was not conducive to commitments on addressing the recommendations with the new administration not yet in place and educational appointments not yet made.
The committee recommends that NCD should plan to follow up with the RSA and OSERS when the new administration‘s appointees are in place and can have time to review the report. 

2. The White Paper on the Employment of People with Disabilities is in its final stages and will soon go to the full Council for review and approval.  It has been hard to find any best practices in connection with the federal government hiring people with disabilities under the Schedule A provision or hiring people with disabilities in general.  It is hoped that this paper and its recommendations will result in the development of improved recruitment and retention programs at the federal level. 
3. The Employment Committee will begin working on a strategy for implementing/following up on the top 10 recommendations from recent reports completed by NCD in the years 2001-2007.  These recommendations do not include items which have, in fact, been implemented.

NCD Employment Committee Top Ten Recommendations 2001 – 2008
(summary)
Public Awareness Campaign
Conduct a public information campaign: A massive public information campaign could help match employers and people with disabilities, in part by publicizing employer best practices, successful public/private partnerships, accessible technologies and universal design methods, including creating job-related outcomes for bulk purchasers for the successful procurement of products and services with Universal Design features.
Partner with DOL, EEOC and other relevant federal agencies concerned with employment of people with disabilities - Explore a national alternative dispute resolution program for employers and people with disabilities to remedy ADA-related workplace disputes.
–
All federal agencies engaged in youth-related policymaking or program administration should take measures to obtain input/ feedback from the children and youth who are the objects/intended beneficiaries of their efforts.
–
Increase federal support in the Departments of Health and Human Services, Education, Justice, and Labor for research and demonstrations to identify effective policies and practices that lead to positive outcomes for youth with disabilities in foster care.  High-quality research and program evaluations should be supported at the federal level, and demonstrate which programs, policies are effective.
WIA Reauthorization - One Stops and the Rehabilitation Act  
–
Address the following issue through public inquiries or targeted research: one-stop centers' effectively serving job seekers with disabilities, DOL entities' nondiscrimination requirements enforcement in programs they support, license or operate; DOL-funded programs' awareness of nondiscrimination and reasonable accommodation responsibilities; and how other government agencies (e.g., VR, vocational education) fare with respect to similar activities & criteria.

Jointly develop a plan for vigorous and proactive enforcement of the antidiscrimination and accessibility requirements of law bearing on the ability and willingness of One-Stop Centers to serve customers with disabilities.
–
Establish, and publicize, a complaint procedure for individuals denied access to one-stop facilities, resources or services.  Incorporate accessibility guarantees in state workforce development plans and funding requirements.
 
Convene a task force (OMB, Council of State Administrators of VR, National Council of State Agencies for the Blind, ODEP, rehabilitation consumers), and recommend to Congress statutory/funding formula changes to reduce/eliminate undue service delays for people with significant disabilities.
 
–
Revise the rules governing all IDA programs, including TANF and AFI, to (1) eliminate distinctions between small business & employment re: capital assets needed by PWD to work; & (2) recognize, through flexibility in asset limits, that accessibility often raises the cost of home ownership.  

Employment Committee Presenters:
Kevin Foster works for Motorola where he has been involved in many different leadership roles related to diversity, organizational structure and development and is currently the manager of the global human resource quality and digital six sigma process.  He talked to us about the diversity management process at Motorola.  

Dr. Tom Siegfried is from San Diego State University Interwork Institute.  Works at the Technical Assistance and Continuing Education (TACE) project for Region IX, based at SDSU.  He addressed some of the latest in education and training efforts with VR counselors.

See Appendix for summary of speaker presentations.

At 12 noon, Chairman Vaughn recessed the meeting until 1:30 p.m.

Emerging Trends Committee Report – Marylyn Howe and Linda Wetters, co-Chairs and Julie Carroll, Staff

Marylyn Howe reported that The Emerging Trends Committee meets monthly, on the second Tuesday of each month at 11:00 a.m. eastern time.  All Council Members are welcome to attend

Ms. Howe provided updates and led the discussion on the following subjects: on the
2008 Progress Report -Marylyn reported that, based on Council input, and due to the extensive nature of stakeholder input, and other related factors, the Committee has
decided to complete and finalize the report in-house.  Council Members and Staff agreed to work together to accomplish this task.  Julie Carroll will continue to coordinate this activity.  2009 Progress Report - The Emerging Trends Committee recommends that the Council conduct an open competition for awarding the contract for the writing of the 2009 Progress Report.  The Council agreed, as that is our normal process unless something is awarded on a sole-source agreement.  The Committee also wants to make sure the request for proposals very carefully articulates the needs of the Council in putting this report together.  The Committee will review the proposal before it is made available to the public.  All Council Members were asked to make sure the 2009 proposal is circulated to any persons they know to be qualified to compete for this contract.  

Action Item: All Committee Chairs and staff will assist with the completion of the Progress Report.

Regional Issues Presenters:

Tony DiRienzi , Executive Director, Arizona Statewide Independent Living Council
Randy Collins , Director, Arizona Assistive Technology Act Project.
Treva Roanhorse ,  Director with the Navajo Nation Office of Special Education and Rehabilitation Services and president of the Consortia of Administrators for Native American Rehabilitation (CANAR).
Jimmy Warne , Director of the Center for American Indian Rehabilitation (CAIR) at SDSU. 
Mike Blatchford, Executive Director for Assist to Independence CIL, and a member of the executive board of the Association of Programs for Rural Independent Living (APRIL) and the Arizona Technology Advisory Board.

See the Appendix for the full summary of speaker presentations.

Health Care Committee Report - Anne Rader and Victoria Carlson, Co-chairs and Julie Carroll, staff

Anne Rader reported that the Health Care Committee meets monthly, at noon on Friday of the second full week of the month, to monitor projects, meet with contractors and discuss emerging issues.
 
Ms. Rader provided the following Health Care Project Updates:

Veterans Project - the Health Care Committee has received and reviewed comments on the veterans’ paper, including comments from Chad Colley and Lonnie Moore, Dr. Shelley Carson, and Dr. Richard McCormick.  The comments have been incorporated and the final draft was presented to the Council prior to the Scottsdale meeting for approval.  The Council voted unanimously to approve the paper.  The council discussed release options, and came to consensus that the release should be low-key - perhaps an Internet release.

Health Care Project - the Health Care Committee received the first complete draft of the report on the Current State of Health Care for People with Disabilities from DREDF.  The report is under review by the Committee, which is also obtaining external expert reviews, including from Dr. Margaret Giannini, Director of the Office on Disabilities at HHS.

Policy Forum on Disability Healthcare Reform

Anne Rader introduced the Health Care Reform Policy Forum, which the Health Care Committee put together to bring disability issues into the health reform debate.  The presenters represent a broad cross-section of the disability field, including seniors, the private health insurance industry, state Medicaid programs, the perspective of people with developmental disabilities, and health policy research.  All materials from today's forum will be made available to the Administration as they work on health reform. 

Presenters:

Leonard Kirschner , MD, MPH, President, AARP Arizona
Anthony Rodgers , Director of the Arizona Medicaid Program, known as the Arizona Health Care Cost Containment System (AHCCCS), the long term care model in Arizona. 
Merrill Friedman , Associate Vice President – National Partnerships and Advocacy – Amerigroup Corporation
Judie Walker , Division Chief, Office for Children with Special Health Care Needs, Public Health Prevention Services, Arizona Department of Health Services  and a Parent of a child with a disability.
Jill Rissi , Associate Director for Research and Policy at St. Luke’s Health Initiatives, a Phoenix-based foundation.

See Appendix for summary of speaker presentations.

Public Comment Session – 4:30 p.m. to 5 p.m.-Moderated by Chad Colley, Vice Chairperson
Public comment was provided on the following subjects.
Healthcare for everyone
CART
Medicaid rights
Health care reform options
HR676
Communication access for people who are deaf or hard of hearing
Hearing loss
Small businesses – small business ownership by people with disabilities
Health care options for small business owners
Paratransit providers
Durable medical equipment for people who are blind and visually impaired
Web accessibility

After the public comment at 4:50 p.m., Mr. Vaughn provided the Health Care Committee Chair an additional 15 minutes for additional questions of the Health panel by Council members.

Chairman Vaughn recessed the Public Meeting at 5:10 p.m. and members and guests reconvened in the adjacent room for a public reception.

Wednesday, January 14, 2009

Members and staff present, same as yesterday.             

Call to Order and Welcome - John R. Vaughn, NCD Chairperson reconvened the meeting at 8:30 a.m. and summarized the agenda for the day.

Introduction of Council Members - NCD members, staff and guests introduced themselves.

Civil Rights Committee Report – Lisa Mattheiss and Victoria Carlson, Co-chairs and Julie Carroll, staff

Lisa Mattheiss noted that in the first week of December she attended the national TASH conference in Nashville.  She thought the conference wanted NCD represented there because of the amount of time that was going to be spent on issues related to restraint and seclusion.  They were aware that NCD has deliberated on this subject at previous meetings, especially within the public education setting.

Mrs. Mattheiss noted that she attended several different workshops and has extensive notes on the conference to share with the Council.

She noted, “A lot of what I got out of all of the sessions on restraint and seclusion is that primarily the situation winds up there because of lack of positive behavioral supports in the beginning.  For the children who wind up hurt, dead, permanently scarred, the reason is they did not get what they needed to begin with  and a lot of options were left out and that leads back to lack of training on the part of the teachers when it's in an institutional‑type setting.  And that goes back to either funding in some cases, an awareness issue or an understanding of the necessity of training.”
 
Victoria Carlson noted that the committee, in addition to monitoring the DD Act Project, continues to learn more about the use of aversive treatments being used on students with disabilities.  The Committee asked its presenters today to address this issue, as well.  Mrs. Carlson then introduced the panel.

Civil Rights Committee Presenters:

Pat Putnam, Executive Director, New Mexico Developmental Disabilities Planning Council
Andrew Mudryk, Southern California Litigation Director, Disability Rights California
Barbara Brent, Assistant Director, Arizona Department of Economic Security, Division of Developmental Disabilities.

See the Appendix for a summary of speaker presentations.

Workforce Infrastructure Study Report Update- Linda Wetters and Lonnie Moore, Committee Co-Chairs and Martin Gould, staff (who joined the meeting by telephone).

Lonnie Moore and Pat Pound gave an overview of the study and the background behind why we made this project a priority.  Martin Gould went over the details of this study.  He noted this study involves an intergovernmental review of: (a) existing public and private funding and resources targeted to building and/or strengthening communities’ human services infrastructure; (b) barriers and gaps in services, supports and accommodations needed by Americans with disabilities; and (c) demonstrated approaches to effectively address identified barriers and gaps.

The major issues expected to be the foci of this study include an evaluation of: a) the forces that shape the human services workforce including education, training, and salaries/pay; b) the ongoing chronic shortages in the area of nursing, teachers certified for special education, direct care service workers for community-based services, personal assistants for independent living, rehabilitation counselors, mental health treatment professionals, sign language interpreters, real-time captioners, nurses, and geriatric professionals; c) the further decreases expected in human service workers as baby boomers retire, d) the training geared towards understanding, working with, and serving people with disabilities in the overall profession(s); and e) retirements, recruitments, and succession planning, and their effect on the human services infrastructure including how to pass knowledge down to the next generation.

Following the Employment Committee report, the chairman asked for a motion for the acceptance and ratification of the executive committee actions from the minutes for the November 10, 2008 Executive Committee meeting.  This motion had been tabled on Monday so the minutes could be distributed to members for their review before a vote.
Victoria Carlson made a motion to accept the minutes from the November 10, 2008 meeting and to ratify the actions of the executive committee therein.  Pat Pound seconded the motion and the motion carried unanimously.

Chairman Vaughn next recognized the continuation of the International Committee report and a motion about the UN Convention on the Rights of Persons with Disabilities letter to the President and the approval of dues for USICD.  They were both tabled on Monday.    

Kathy Martinez and Victoria Carlson, Co-chairs and Joan Durocher, staff:
Discussion ensued on the Council’s membership with the United States International Council on Disabilities (USICD).  Joan Durocher represents NCD on this Council.

Motion: Kathy Martinez moved that the Council continue its membership in the United States International Council on Disabilities (USICD).  Pat Pound seconded the motion.  The motion passed unanimously

Chairman Vaughn then brought to the floor the previously tabled motion to have the Council chair write a letter to the President (with a copy to the relevant Senate committees) and urge him to sign the UN Convention on the rights of Persons with Disabilities and work toward ratification in the U.S. Senate.

This motion was originally made by Pat Pound and seconded by Chad Colley.
A discussion ensued and resulted in Pat Pound and Chad Colley withdrawing their original motion as amended.
 
Pat Pound moved that NCD write President Obama encouraging him to sign the UN Convention on the Rights of Persons with Disabilities.  Chad Colley seconded the motion.
 
The motion passed with 11 yes votes and 3 no votes.

The Chairman then stated that the draft letter to be sent to the President encouraging him to sign the UN Convention on the Rights of Persons with Disabilities will be circulated internally for Council review and approval as to content.

Pat Pound requested and the Chairman agreed, that any member can request a copy of today’s CART transcript by asking Mike Collins.  It was noted that the transcript is not edited and so it is for our internal use only.  

The committee discussed NCD’s involvement in G3ICT, (the Global Initiative for Inclusive Information Communication Technology), a UN initiative.  The Council had made a two year commitment to support this initiative two years ago and the question is whether the Council should renew this commitment of the Chairperson or staff time for another two years.  The international committee feels there may be a conflict to continue with this initiative and so are not recommending the Council’s continued involvement in the G3ICT.  It was noted that a conflict may arise as the evaluation tools NCD helped develop are used by the G3ICT in the evaluation of individual nations in their effort to comply with terms of the UN convention. 

Continuation of Emerging Trends Committee Report – Marylyn Howe, Chair, Linda Wetters and Julie Carroll, Staff and Joan Durocher Staff representative for the Housing Study.

Linda Wetters gave a progress report on the housing study with the University of Illinois at Chicago.  The project is intended to be a comprehensive study of the state of housing in America in the 21st century.  The evaluation will focus on: (1) public laws, policies and program initiatives that affect housing opportunities for Americans with disabilities, as well as others who have accessible housing needs, e.g. the aging population and those who acquire temporary disabilities; and (2) housing, supports, and other benefits provided by or available through the public and non-profit and/or private sectors.  The purpose is to determine whether, and to what extent, public and non-profit and private housing and related programs have provided adequate, affordable and accessible housing for Americans with disabilities as well as others who have accessibility needs, like the aging population and those who acquire temporary disabilities. 

The research will identify and review current practices and policies at the local, state, national and international levels with an emphasis on those policies that appear to be innovative and successful and will result in a major report consisting of a series of topical briefs on several housing-related issues.  The report will be formatted as a standard NCD report with an executive summary -- but each topical brief will be a substantive stand-alone document in its own right that can be shared with stakeholders on specific issues.  A cohesive, final report will incorporate the findings and conclusions that can be drawn from the topical examinations, and include recommendations for advancing the attainment of accessible and affordable housing. 

Guidance for this project will involve an expert committee that will provide advice on the foci, design and evaluation of the key issues.  Committee membership may include: individuals with disabilities, members of the public/non-profit/private sectors, academics, planners and architects, banking and financial experts as well as other interested members of the disability research and advocacy communities to harness the breadth of expertise that exists within the disability community (as well as the aging community, many of whom will acquire disabilities).  The expert panel will provide input and oversight throughout the length of the research project. 

Selected panel members will author specific topical briefs that form the major portion of the deliverables for this project.  The expert panel will play an active role in developing policy recommendations that can be implemented in the private sector, the public sector, or as a combined effort. 

The study kicked off on September 1, 2008.  On October 31, 2008, the first expert committee meeting was convened to finalize the scope of work and topical brief outlines.  Expert Committee members were sent packets of material approximately two weeks in advance via email.  This included an outline of expectations for their involvement plus the proposed timeframe and the focus for three teleconferences, topical brief outlines and a data list.  Most members of the expert committee participated, along with UIC team and NCD members, and the topical brief outlines were finalized.

The project contractors will be meeting with the full Council at the spring quarterly meeting to discuss the progress of this report.

Continuation of Health Care Committee Report - Anne Rader and Victoria Carlson, Co-chairs and Julie Carroll, staff:
The Health Care Committee has received and reviewed comments on the veterans’ paper, including comments from Chad Colley and Lonnie Moore, Dr. Shelley Carson, and Dr. Richard McCormick.  The contractor has incorporated these comments, and has submitted a final draft for review.  Discussion ensued on the release date and format.

Motion: Anne Rader moved that the Council accept the Veteran’s paper.  Victoria Carlson seconded the motion.  Discussion ensued.  The motion passed unanimously. 

The Health Care Committee received the first complete draft of the report on the Current State of Health Care for People with Disabilities from DREDF.  The report is under review by the Committee and by external experts, including Dr. Margaret Giannini, Director of the Office on Disabilities at HHS.

Public Comment Session – Moderated by Chad Colley, Vice Chairperson
Public comment was provided on the following subjects:
Parents with disabilities
Mental retardation services in TN
Daniels Cluster case in TN
Tenncare and restrictions that impede the individual from leaving the home
Continuum of care items that are not provided in TN
TN Transition services
Lack of work-based learning opportunities in the school system in TN
Community accessibility in TN
Universal access to healthcare in AZ
CART transcript request from WA
Environmental sensitivities in AZ
affordable, accessible, integrated housing in CA
TennCare - Out of pocket insurance coverage and income limitations.  Tennessee does not have a CHIP program, or Children’s Health Insurance Program (presented by Lisa Mattheiss) Daniels injunction – Medicaid waivers

Action Item: Julie to obtain some CMS data to see which states have a waiver program

Strategic Discussion of report planning and priorities – Mike Collins, Executive Director

NCD will consider President Obama’s priorities when planning projects

Current report releases planned:

2010 National Summit on Disability Policy - The summit will be held in July 2010 and within six months after the event New Editions, our contractor, will have produced summit proceedings and publications on the policy recommendations.

Under this cooperative agreement, New Editions, Inc. will assist the National Council on Disability in convening a two-day National Summit on Disability Policy, on the ADA anniversary in 2010.  The purpose of the summit is to help set a national policy agenda for 2010-2020 designed to improve quality of life for people with disabilities.  A Council meeting will be held in conjunction with the National Summit.  The date for the summit is July 26-27, 2010.  The summit will be held in the Washington, DC metropolitan area.  Approximately 400 attendees are possible, depending on the registration and selection criteria.

The 10 proposed White Papers will be based on the 10 proposed tracks of the Summit, which are:

Civil Rights (including voting issues)
Employment (including Asset Accumulation/Finance)
Education
Health Care (including Mental Health Care, i.e. whole health)
Transportation
Housing
Telecommunications and Technology
International
Homeland Security (including emergency preparedness)
Disability Statistics

FY 2009 Reports and additional options:

1) National Summit on Disability Policy papers
2) Annual Progress Report to the President and Congress
3) Homeland Security
4) Healthcare - Access to Finances for Health Care
5) Transition from School to Adulthood
6) Comprehensive Review of Mental Health Systems

Additional Project Options for Fiscal Year 2009 or 2010
While not on the original list of projects for either of these fiscal years, the following three ideas have been mentioned by staff and members as worthy of consideration due to the current environment:

1) Funding of Federal Civil Rights Enforcement
2) Evaluation of NIDRR
3) Evaluation of Child Abuse Protection and Treatment Act (CAPTA)

Proposed Projects for FY 2010 NCD Budget

1) Proceedings of the National Summit on Disability Policy
2) Annual Progress Report
3) Homeland Security
4) Comprehensive Review of Mental Health Systems
5) Health Care Financing for People with Disabilities
6) Study of Employment and Technology
7) The Accessibility of U.S.-Based Overseas Development programs

Strategic discussion ensued on the Council priorities and the following subjects.
What approach should be taken for the 2009 Progress Report?
Initiating discussion of possible FY 2011 budget items:
Parental rights
Electro shock and other aversive therapies

Action Item: Each committee will discuss priorities as they correlate to the new administration's agenda.  Mike to send project list to the committee members and to the staff for each of the committees.  Committees to prioritize list and submit to executive committee for review and submission to Council for individual feedback. 

Continuation of the Council business session - John R. Vaughn, NCD Chairperson

Discussion ensued on the use of NCD email addresses and the use of the FTP website.  Any member wishing to have a NCD email address or needing assistance accessing the FTP site should contact Mark Quigley.

Mark will send out the agency intranet URL and pass code to members so they can access this site.

It was agreed that E-mails that are for immediate attention should have that item in the subject line and items that are really casual reading items should be marked accordingly in the subject line.

Discussion ensued on the meeting format and the number of days.  The majority of members agreed they were willing to meet late Sunday afternoon for a few hours to conduct Council business if that could shorten the overall number of days for the meeting to two full days.

The council also agreed to do something with the schedule on Tuesdays to lengthen the lunch break and limit panel size to no more than 3 speakers.

Motion: Linda Wetters moved to adjourn.  Chad Colley seconded the motion.  The motion passed unanimously.

Meeting adjourned at 11:30 a.m.

International Committee – Kathy Martinez and Victoria Carlson, Co-chairs and Joan Durocher, staff

Presenter: Eric Rosenthal, Founder and Executive Director Mental Disability Rights International (MDRI) Vice President, United States International Council on Disabilities

*Very pleased NCD has re-joined USICD.
*USICD is very committed to working on the UN Convention on the Rights of Persons with Disabilities (CRPD) and would love to see NCD take as strong a leadership role as it possibly can in the process.
*President Obama has come out very strongly in favor of the convention and said that he would sign it.  This is a very strong and important leg up on the process.  Historically the United States has been hesitant to enter into international treaties, and so having the presidential support is critical.
*Reviewed ratification process:
-As background, the term “treaty” and “convention” are often used interchangeably.  A convention is usually understood as a special kind of multi-lateral treaty.  A treaty is an international commitment by a country to be legally bound.  Under article 4 of the CRPD, every government that ratifies agrees to “adopt all appropriate legislative, administrative and other measures for the implementation of rights” under the convention.  This includes a commitment to “modify or abolish existing laws, regulations, customs and practices that constitute discrimination against persons with disabilities.”
-All treaties have to be signed before they’re ratified.  Obama needs to sign it, and then send it over to the Senate for ratification.  Once he's signed it, then the Senate has to provide the advice and consent and provide the two‑thirds majority in order for it to become law.
-There are different processes historically in which this has happened.  Usually treaties that are signed by the President come out of the Office of the Legal Advisor in the State Department.  Usually the Office of the Legal Advisor is very actively involved in the negotiation of the treaty, knows the treaty in and out, knows the law, knows its implications and is usually the leader.
-This treaty is different.  While the United States was involved, this was a multi‑lateral treaty in which the U.S. was not the biggest player.  So the Office of Legal Advisor doesn't have that much involvement in this type of treaty historically.
-The second reason why this is a little different is that Obama has already said that he would sign it, and so it's entirely possible in a sense to circumvent a process which can be very long and complicated which usually happens through the Office of the Legal Advisor.  Obama could sign it and go straight to the Senate.
-Usually what happens with the treaty when it comes out of the Office of Legal Advisor is that before a president signs it and sends it to the Senate, they may set up an interagency working group.  It's usually run by someone at the National Security Council who acts as a referee among the different U.S. agencies and departments that have an interest in what's covered by the convention.  That process can be long and complicated in which every element of the treaty is vetted, it's determined what policies would need to change, what laws would need to change in order to bring the United States into compliance with the treaty, and that process can take a long time, and it can be an opportunity for opposition to the treaty to be raised. 
*The report that the National Council On Disability commissioned by Michael Stein (the Comparative Analysis), as you know, has already done a very preliminary but really solid analysis showing that the convention as a general rule is consistent with the principles of American law, consistent with the spirit of the Americans with Disabilities Act, and with the letter of the Americans with Disabilities Act.  In some ways it pushes us towards more of an optimal level of how we would like to see disability rights enforced, and in practice we may often fall short, but for the most part, the convention is consistent with American law, and we could make an argument in good faith that says that these are principles that the United States has pioneered and we should really be the backing a convention that embodies all we stand for in terms of our antidiscrimination principles.  As the article points out, however, there are some areas where the CRPD is not consistent with current US law or practice.
*Senator Harkin is open to circulating a resolution calling on the Obama administration to sign the convention and send it to the Senate for ratification.  He has not yet determined whether such a resolution is necessary.  
*Usually when an incoming Secretary of State comes in, even after a president has signed a treaty, there's a prioritization process where the Secretary of State decides the issues they want to put forward to the Senate, what are the international legal issues that are top priorities, so that even after the Obama administration has signed it, it then becomes up to the Secretary of State to send their priority items over to the Senate.  So the second person who it's going to be really critical is Senator Clinton ‑‑ once she becomes Secretary of State.
*The other key person who could play an important role is Susan Rice, the nominee for U.S. Representative to the United Nations.  Because this is a United Nations convention and relates to our policies and relationships to the United Nations and involves a U.S. commitment to working through the U.N. system on disability rights, having support from Susan Rice would be very important.  So in terms of priorities, high‑level support from within the Obama administration is the most important.  Then getting the Secretary of State's support.  Then getting the U.N. Ambassador support.  And then moving over to the Senate.  Once that process has happened, then there's a whole process through the U.S. Senate.
*The Senate majority leader gets to decide which committees weigh in on this.  Ultimately it has to be the foreign relations committee that signs off on any treaty, and then brings it to the full Senate.
 *The United States Senate may choose to ratify a convention with reservations, understandings, or declarations (known collectively as “RUDs”).  A reservation is a statement by the United States that we do not consider ourselves internationally bound by a particular provision of a treaty.  An understanding or declaration explains our interpretation of a treaty or how we intend to implement a treaty.  The United States historically has ratified human rights conventions with many reservations.  The international disability community has strongly backed the CRPD as drafted and opposes reservations.  While some RUDs may be needed to ensure a 2/3 majority in the Senate for ratification, the negotiations on this point are critical.
*The Council asked why Bush chose not to sign it?  The stated reason why he chose not to sign it was that the United States already has the Americans with Disabilities Act and therefore we did not need an additional treaty obligation when disability rights are already protected under domestic law.
*Even though that may be the case, what a treaty does is it provides an international engagement.  It says the United States will allow itself to be assessed under international standards.  So it goes beyond just saying we will abide by these standards.  It involves a commitment to participate in the U.N. process and, in fact, it provides an opportunity for the United States to participate in helping to interpret how the convention is applied, not just in the United States and in other countries.  So even if the United States already provided all the rights, there are still a lot of advantages to ratifying the treaty, and really becoming a player in the international implementation of it.  But that was the stated reason on the part of the Bush administration.
*First step that has to happen, and the one that's of most critical importance in terms of speed, is to get Obama to sign.  So given the fact he's promised to sign, the biggest challenge is simply a new president is doing an enormous number of things, and the question is what's going to get his attention early on.  So, in my view, just going on the record with Obama, saying, please sign and please do it as soon as possible, would be most important.  If the process stalls and it takes longer, then the Harkin resolution becomes important.  But right out of the gate, focus straight on Obama.
*More background was given on the reasons for the US not signing the treaty up until this point:
-The hesitance of President Bush to sign is not a reflection of disagreement with the CRPD on the disability issue at all.  There was the stated reason (given above, that these rights were already protected under the ADA) and then there was the politically understood reason.  The politically understood reason is the Bush administration is hesitant to sign multi‑lateral human rights commitments.  And so many people believe that the stated reason was not the true reason.  The broader reason was a broader hesitancy, and we've had this tension historically.
*People in the human rights community were very impressed by the strong statement that Obama made on the convention.  In terms of treaty commitments, the statement that Obama made on the convention was clear and unequivocal and the Council should not feel hesitance in calling for President Obama to sign it quickly.  The more support they can see from the disability community the better chances that it rises to a higher level of priority.

Homeland Security Committee – Pat Pound and Chad Colley, Committee Co-Chairs and Martin Gould, staff

Presenter: Trent Hamblin, Director of Operations, UTM Event Management & RTW Management

Trent has been involved in passenger transportation for the past 16 years.  During that time he has worked to provide accessible transportation at the 2002 Olympics and Paralympics; created the Paratransit division for Utah Shuttle Services; and, has been “on the ground”  providing wheelchair transportation services and supports during Hurricanes Katrina, Rita, Dean, Dolly, Edward, Gustav, and Ike.

Mr. Hamblin's presentation involved a discussion of critical disaster transportation issues and problems, as well as potential solutions; he has encountered and/or observed over the past 16 years.  The problems he identified during his presentation included: (1) generic transportation dispatch services and personnel unable to manage individualized wheelchair transport requests; (2) inadequate numbers of wheelchair lift-equipped vehicles for large scale evacuations; (3) inadequate coordination of specialized transportation resources across states experiencing the same disasters; (4) insufficient disaster recovery planning and service delivery for people who continue to need specialized transportation services and supports;  (5) besides the insufficient numbers of transportation vehicles equipped with wheelchair lifts, there are insufficient numbers of drivers who know how to use those vehicles; and (6) inadequate advance planning for transportation services and supports provision during a disaster.

Employment Committee - Linda Wetters and Lonnie Moore, Committee Co-Chairs and Joan Durocher, staff

Presenter: Kevin Foster, Motorola

*Significant rates of unemployment and underemployment continue to persist for working age individuals with disabilities.  This is due largely to a number of systemic and attitudinal factors.  Over the past three decades, both legislation and technology have played a strong role to begin addressing some of these barriers.  Despite the introduction of legislation and new technologies, there is widespread agreement that the unemployment rate has remained extremely high regardless of economic conditions.
*A massive service-based infrastructure exists throughout the United States designed to support people with disabilities in terms of education, employment and independent living.  The system consists of a wide range of government, non-profit, and for-profit organizations.  All have developed internal processes to serve their customers.  Employers have also developed robust processes to address workforce planning, sourcing, and recruiting.
*The focus of the discussion was on alignment.  Specifically, a high level examination of the process gaps between employers and service providers, implications, and recommendations.  
*Motorola’s focus from a diversity standpoint is on attitude and awareness.  There is a lot of opportunity to learn about disability and to learn about different aspects of disability.  By integrating diversity into every aspect and other existing processes, it becomes part of the company's DNA in terms of how they operate and how they do business.  So, for example, diversity needs to be embedded in sourcing and recruiting processes and strategies.  Diversity has to be embedded and aligned with other aspects of retention, employee development, learning, the workforce planning process. 
*And when you look at a mature diversity program or initiative, oftentimes less mature processes will focus primarily on the EEO aspect, gender and ethnicity.  But as you begin to grow that, it goes beyond just the employment aspect.  In other words, you have to begin looking at disability, gay and lesbian issues, the global issues and then start driving diversity into product design, development, marketing and sales.
*Those aspects of diversity as you grow become part of how a company does business and some companies do that really well.
*Motorola also focuses on accessibility and it has different ‑‑ there are different facets to this.  First of all, and foremost obviously there is physical access.  How do people access our facilities?  Get in and out?  Access the ‑‑ all of the different parts of our buildings and our facilities.  The other side of it is product access.  How do we work to make sure that our Web environment as well as our products are accessible? 
*How a process works is so important.  And companies, corporations really operate through process.  Motorola works with staffing professionals and hiring managers to help them understand that disabilities occur on a continuum and that there are different levels of disability in terms of how it impacts an individual, how recent the disability ‑‑ the onset of a disability, for example, impacts how somebody ‑‑ how people react and how people are dealing with different disabilities.
*Every process which is very important has four key elements.  It has a supplier.  It has inputs.  It has outputs.  And it has a customer.  Every process has that. 
It is important to realize that the most important part of any process is a customer.  Who is a customer?  And that question is so important, especially when looking at employment for people with disabilities.  And understanding that organizations, voc rehab, service providers, non‑profit organizations are providing a wealth of services and resources to people with disabilities, they operate on process as well.
*Every organization has limited resources, especially today.  So the question is:  If you do identify your customer, the actions, the activities, the programs and initiatives don't oftentimes roll out to what the end goal or need of the customer is.  We have a lot of wonderful deep expertise in organizations, and that expertise knows exactly what to do and what needs to be done but often times it happens outside of what I would characterize "the voice of the customer."
*How do we ensure that what we as a corporation or a rehabilitation organization or a non‑profit organization, what we're spending time and resources on, does it tie or roll up to a critical need of our client or our customer?  When looking at the customer, and efficiency, and resource allocation and how limited our resources are today, it's even more important that we engage in a process by which we validate what we do, why we're doing what we're doing.  If nobody wants it, why do we do it?  That's a question we need to ask oftentimes.
*So when we look at the value of services, we look at the value of a procedure or activity, step back and try to make some linkage between what the customer wants and what it is you’re doing so as to validate and measure what it is that is required.
*There are different tools and approaches to address this.  There are organizations that can begin to bridge the gap and to help support alignment between what service providers, voc rehab and non‑profit organizations and corporations are doing to start building alignment.
*For example, the United States Business Leadership Network.  The USBLN is a wonderful platform on which organizations can talk.  It is a great platform from which that validation process can begin to take place.
*The whole notion of process is important to a corporation that is there to make money.   It's important to support organizations that are there to support their clients and are, in many cases, non‑profit or part of a government agency.  Either way the bottom line is that we have limited resources and how can we best utilize and maximize those resources?
*When we look at the process, when we look at customer and the need, that’s a very important aspect of the whole issue in terms of gap and alignment.

Employment Committee - Linda Wetters and Lonnie Moore, Committee Co-Chairs and Joan Durocher, staff

Presenter: Tom Siegfried , Ph.D., C.R.C., Co-Director, Technical Assistance and Continuing Education (TACE), Region IX, San Diego State University (SDSU)

*The TACE Center in Region IX is funded under RSA, the Rehabilitation Services Administration.  TACE, which stands for Technical Assistance and Continuing Education Center, is a part of the Interwork Institute at San Diego State University.  Interwork Institute is home to academic programs in the Administration Rehabilitation Post-secondary Education Department in the San Diego State University College of Education.  Interwork Institute also hosts a variety of government (Federal, State and local) supported grants and contracts, in addition to collaborative efforts in education and rehabilitation.  The mission of Interwork Institute is to enable individuals organizations and communities to support, appreciate, and engage diverse members in community integration through education, research and advocacy.

The TACE Centers are a new program, evolved from RCEP (Rehabilitation Continuing Education Program).  TACE IX provides assistance to all V.R. agencies in the Region IX, Arizona, California, Nevada, Hawaii, Guam, American Samoa and the Commonwealth of the Northern Marianas Islands.  We work closely with those state agencies to monitor the consumer needs in those states and then assist in the development of programs around continuing education and technical assistance that will address those needs and help improve the performance of staff to better meet those needs.  Also collaborate nationwide with all other TACE centers (there are 10 in all) to make sure that things that are working in certain parts of the country we can adapt and use them and replicate those efforts in other parts of the country as well.

TACE is now the funded program that assists vocational rehabilitation and all the agency partners in a regional area.  Among the assistance provided is technical assistance and continuing education involving a variety of methods and resources.  One example is an online learning  method (e-Rehab) which provides a web-based orientation and training to support professional development of rehabilitation personnel,  state rehabilitation councils, and the many community organizations that support  vocational rehabilitation.  Additional online training programs (Talent Knows No Limits and HRTS) are developed that address the specific interests of One-Stop Career Centers, HR managers which are designed to allow individuals in different work environments become more familiar with working with people with disabilities in an employment capacity.

In terms of the challenges that Interwork Institute faces as an entity, and the country faces as a society, one critical issue is meeting the tremendous need for qualified rehabilitation professionals.  The comprehensive system of personnel development (CSPD) was regulated in the Rehab Act to allow for development of qualified individuals to go through an academic program to be able to provide services to individuals with disabilities within the Federal/State vocational rehabilitation system (VR).  CSPD was founded, based on surveys that took a look at the differences between people who are qualified (i.e. having degrees in rehabilitation counseling) and the outcomes of clients that they served versus people who did not have those same qualifications and the outcomes of those clients that they served.  These studies found a much higher degree of successful employment outcomes, a much higher starting wage resulting in a better ultimate goal for the individual consumers when they are served by a qualified counselor.  Added to that challenge is the fact  that we're facing is dealing with concept and definite impact of succession planning.  We see a lot of people “aging out”  of rehabilitation and there are not a lot of people entering the profession.  Many competent people are beginning to retire after years of public service.  We must address the implications of preparing future personnel to meet the current and future needs of individuals with disabilities.

Another new challenge has to do with preparing for emerging needs of individuals with disabilities.  We see a greater need in transition from school to adulthood for youth with a variety of disabilities.  We also see emerging needs in transition programs for military personnel who are returning from our war efforts around the world and dealing with some medical injuries and personal issues  that we are just now discovering methods and technologies that can assist those individuals and provide them with opportunities to lead productive lives, once again.

Finally, the amount of resources and how they're focused on the needs of the consumers we serve is at a critical stage.  We have seen a reduction in resources for technical assistance and continuing education programs across the country.  Most critically, as it relates to professional development, is the funding for CSPD.  There was a national survey conducted by the Council of State Administrators for Vocational Rehabilitation just this past year.  Of 10,000 counselors employed by state V.R. agencies, 40% do not have a master's degree.  If you add to that the people who are also retiring who have master's degrees, you are going to see there will be a tremendous need for people with master's degrees to fill those positions. 

Emerging Trends Committee – Marylyn Howe, Chair and Julie Carroll, Staff

Regional Issues Presenter: Tony DiRienzi, AZ Statewide Independent Living Council

DiRienzi serves on the board of directors of several disability organizations, such as the Arizona Center for Disability Law, Arizona Technical Access Program (AZTAP), ArtAbility, and the Arizona Disability Advocacy Coalition (AZDAC), among others.  DiRienzi serves on various advisory and planning committees for the State that focus on Emergency Preparedness Planning for People with Disabilities. 
Topics discussed:
Creation of a Multi-organizational calendar
Outreach to the Native American communities
Emergency preparedness
Assistive technology in emergency preparedness
Emerging Trends Committee – Marylyn Howe, Chair and Julie Carroll, Staff

Regional Issues Presenter: Treva Roanhorse , Consortia of Administrators for Native American Rehabilitation (CANAR)

Roanhorse is the director with the Navajo Nation Office of Special Education and Rehabilitation Services and president of the Consortia of Administrators for Native American Rehabilitation (CANAR) and was just reelected as president at the CANAR annual conference in Phoenix, AZ in November 2008.  Treva is a member of the Navajo Nation and has been involved in vocational rehabilitation and related fields for the last 20 years.

Issues and concerns were expressed in regards to initiating and improving tribally appropriate vocational rehabilitation (VR) service provision on reservations nationwide, as State VR services and administrative plans often conflicted with tribal norms, eventually leading to high rates of unsuccessful closures among Native American clients.  As a result, on January 22, 1993, the Consortia of Administrators for Native American Rehabilitation (CANAR) was established, which functions as a national platform for advocating the needs for effective rehabilitation service delivery for American Indians and Alaska Natives with disabilities.

Emerging Trends Committee – Marylyn Howe, Chair and Julie Carroll, Staff

Regional Issues Presenter: Jimmy Warne, Consortia of Administrators for Native American Rehabilitation (CANAR)

Currently, Jim is the Director of the Center for American Indian Rehabilitation (CAIR).  Jim is coordinating the Post Employment Training-American Indian Rehabilitation (PET-AIR) Project and the PET-AIR Bachelor in Vocational Education (BVE) certificate program and working as a trainer for RCEP IX at SDSU.  PET-AIR provides funding for Tribal VR professionals to obtain 21 masters level units through a certificate program at SDSU.  The certificate units can be transferred into rehabilitation counseling masters programs for the PET-AIR graduates that choose to continue with higher education.  PET-AIR/BVE is an 18-unit certificate program leading to a BVE degree.  Warne stated that American Indians have the highest rate of disabilities. 

Emerging Trends Committee – Marylyn Howe, Chair and Julie Carroll, Staff

Regional Issues Presenter: Randy Collins, AZ Assistive Technology Act Project

Prior to his current position as director, Collins worked as the Outreach/Training Coordinator for Arizona Technology Access Program (AzTAP).  Prior to AzTAP Collins was the Field Services Supervisor for North Carolina Division of Services for the Deaf and the Hard of Hearing.  He is the former Parent Information Director for the Florida School for the Deaf and the Blind.  He has also worked as an assistive technology trainer for California State University Northridge’s National Assistive Technology Application Certificate Program.  Currently, Collins serves as the vice chair of the executive board of the Arizona Governor’s SILC where he is also a member of the community collaboration committee.  Randy has a M.Ed. in Deaf Education.  He has a certificate in Assistive Technology Applications from California State University Northridge.  Collins is a disabled Vietnam Veteran and has been wearing hearing aids since 1971. 

Topics discussed:
Partially funded the independent living technology center
Provides telecommunications equipment demonstrations for the state telecommunications equipment distribution program

Health Care Committee - Anne Rader and Victoria Carlson, Co-chairs and Julie Carroll, staff

Policy Forum on Disability Healthcare Reform

Presenters: Dr. Leonard Kirschner, Seniors and People with Disabilities Health Reform Advisory Board
Merrill Friedman, Amerigroup Corporation
Anthony Rodgers, Director, Arizona Health Care Cost Containment System
Judie Walker , Office for Children with Special Health Care Needs, Public Health Prevention Services, Arizona Department of Health Services
Jill Rissi , St. Luke's Health Initiative

Healthcare Briefing Paper: Toward Inclusive Reform

“…[W]e see the opportunity as we go forward to move into a new world, an opportunity not to be fearful but to, in fact, be courageous in moving forward into 21st century health care systems revised, the people that we serve with the services that they want, not the services that we want to give them.”  (Dr. Leonard Kirschner, AZ AARP)
 
Introduction: During its quarterly meeting held in Arizona (AZ), January 12 - 14, 2009, the National Council on Disability (NCD) heard from family members of children with disabilities, people with disabilities speaking for themselves, disability organizations and other people at the federal, state, tribal and local levels around the country.  Research shows that people with disabilities may experience unintended negative consequences associated with the lack of access to health services and necessary medical care.  Many also may be at increased risk for developing various unexpected conditions that can be disabling or trigger secondary disabilities.

The Health Care Panel at the AZ quarterly meeting was introduced by Council Member Ann Rader, Chairperson, of the NCD Health Care Committee.  This summary of information reported to NCD identifies some challenges and elements for consideration in drafting provisions for healthcare system reform.  Comments are reported in five categories by the invited panelists.  The subtitles used in this summary are associated with the speakers who are named are in parenthesis— national advisory group results (Dr. Leonard Kirschner); reform in action—state perspectives (Mr. Anthony Rodgers); healthcare company reform efforts (Ms Merrill Friedman), families of children and other relatives (Mrs. Judie Walker), and broader economic ties (Ms. Jill Rissi).  Endnotes identify additional data and/or sources for people interested in learning more about issues.

I.  National Advisory Group Results – Dr. Leonard Kirschner (President of the AZ AARP, a former AZ Medicare Director and a participant in a national advisory board collaboration), told the Council that he would share information regarding perspectives of a national advisory board.  Prior to discussing the specifics of the paper, Dr. Kirschner reported that from an AARP standpoint, health care system needs are high on the agenda, as witnessed through a December 2008 state level health care forum.  One of their (AARP) plans is to share with President Obama the outcomes of the forum plus citizen requests to “fix our health care system.” 

The remainder of Dr. Kirschner’s presentation shared what participants (including Lex Frieden, a former NCD Chairperson) on the national advisory board (represent several national organizations) developed collaboratively around issues impacting people with disabilities.  The advisory group reached consensus that among the key barriers were those to transportation, housing and vocational rehabilitation impact healthcare access.  The group’s plan targets transforming health and long-term services for seniors and people with disabilities.  Overall, the suggestions shared by Dr. Kirschner called attention to needs around individual disaster plans, a national repository, supporting awareness-raising or public education about available clinical services, assistive technology and legal and advocacy resources.

Summarily, six criteria were set forth by the advisory group to improve healthcare for all, with particular attention to people who are aging, have chronic illnesses, or disabilities— Enhance self-care (by individuals) through improved coordination of services, empowering people with education and tools; Encourage community integration and involvement by elimination of financial and structural barriers (opposing the “warehousing of people”); Expand accessibility of services and support (working on the difficulty of supplying enough service providers); Incorporate personal preferences  (encourage opportunities for people to express their choices); Empower people to participate in the economic mainstream (changing systems to remove barriers to work, e.g., eliminating practices that require spending down of all assets; not allowing people to work & keep their needed benefits); and Improve investment in technology for data storage and treatment innovations.  Dr Kirschner also indicated that a paper on these issues authored by the advisory board can be expected for dissemination with the near future.

II. Reform in Action: State Perspectives – Mr. Anthony Rodgers, the Director of the Arizona Health Care Cost Containment System (AHCCCS) was the second presenter.Three key principles were noted for action: (a) Study relevant evidence-based data and analysis.  (b) Build-in required oversight, assessment, and performance improvement plans with incentives.  (c) Increase capacity for electronic healthcare provider communication and tele-monitoring.  To address a growing national trend wherein employer-based health insurance coverage is declining and adding to the number of uninsured families, the state of AZ is implementing the AHCCCS.

Mr. Rodger reported that AZ State also placed responsibility for working collaboratively through the state’s developmental disabilities program, as well as its long-term care system (existing before Olmstead) under AHCCS, based upon analysis of data from a statewide health survey.  With such interactions moving away from traditional silo-type operations, AHCCCS manages healthcare or community services for seniors needing long-term supports.  In addition, AHCCCS manages the work-related benefits (under a “freedom to work” program) and healthcare coordination needs of people with chronic health conditions, and/or developmental disabilities (e.g., people with epilepsy, cerebral palsy, [intellectual disabilities] and autism and so forth).

“Throughout the United States, Medicaid managed care programs have had mixed result, [e]specially, in terms of the disabled and the elderly except in AZ.  The reason that AZ has been successful in managing our program is because we manage managed care for our vulnerable populations very well.”  (Anthony Rodger, AHCCS)

AZ is a state with “25 years of program pioneering and innovation,” as attested by both the first and second panelists.  As such, Mr. Rodgers contended that successful managed care is attributed to diligent oversight of policies, procedures, and data analyses built into AHCCCS.  More specifically, Mr. Rodgers identified key elements to which attention must be given to achieve the success experienced in AZ.  Predicated by important measures of flexibility that an 1115 waiver (bringing relief from some of the federal bureaucracy) can allow, the elements include: 

1. The ongoing assessment of Medicaid program quality, choice, access and care coordination (working to meet the needs of with children and adults through community-based service –rather than institutional based).  Consumers can elect friend of family member care providers (for whom training is provider through AHCCCS) ; and
2.  Implementation of a performance improvement system across programs that addresses indicators such as contractor placement records, health care delivery, chronic illness treatment, member grievance and other operational, financial and quality factors.  This includes ongoing and as-needed review.

III. Healthcare Insurance Company Policy Reform Efforts - Ms. Merrill Friedman represented with Amerigroup Corporationand characterized her work as “national partnerships in advocacy.”  She indicated that Amerigroup programs seem to be working in several states using managed care for Medicaid recipients.  Examples of the Amerigroup activities/program reportedly has focused on uninsured and underinsured people with potential eligibility for Medicare and/or Medicaid.  Ms. Friedman also stated that Amerigroup focuses on individual choice and planning. . .”to enhance health and well-being, coordinating services based on best practice.  .  .reliable services [with outcomes that] can show success.”
Ms. Friedman used NM, TX and FL examples of how the insurance company serves people with disabilities and seniors and that aim to administer programs “dedicated as a holistic, social, behavioral and emotional health care model.  She was asked to describe some barriers encountered and what is needed to overcome them.  “[People] may need to be hospitalized for a period of time.  But unfortunately, some people do get stuck there and are not integrated back as quickly as they should be.  So those are [listed below and] ‑‑ that's where the system has to become more and more flexible going forward.”

1. Some of these barriers start with us, the perception of managed care organization.  People hear managed care and they sometimes flee.  We need to help change that.
2. . . .  [Also] if we could change the term "managed care . . . better explain what we are trying to do to assist but not take away people's personal choice.”
3. [In] transition of people into the community, obviously durable medical equipment comes to play
4. [Provider capabilities can be barriers, too. . . for example]. . .  “Are there appropriate beds and lifts and chairs within the doctor's offices so the people can get the appropriate treatment that they need?. . .  Ramps, doorways, lift. . .  .”
   4. Networks and specialists need to adequate in number
5. Care managers “can be that lifeline”. . . .  in maneuvering the systems.  .  assure coordinated service, resources and care.  Ms. Friedman gave an example a TX program
6. FL uses a diversion program “created . . .as an alternative to people living in nursing home . . .people 65 and older can choose assisted living facilities or their own homes
7. NM’s program was described as fabulous “coordinating people’s care, designed solely to keep people in the community and to avoid or at least forestall nursing home or institutional placement.  It is consumer-centric.”

Based on experiences with the Amerigroup insurance, Ms. Friedman identified these as important elements for effective healthcare reform: Operating integrated care - combining physical behavioral, social and long-term medical care services; focusing on community living—developing alternatives to residing in nursing homes, keeping people with families and people that they choose and trust.  Ms. Friedman’s final point provided data about the future and challenged the listeners’ thinking.  “In 2016, Medicaid expenses are anticipated to be $677 billion at the current 8% rate of growth with the expectation that we will approach the 1 trillion‑dollar mark in about 13 to 14 years.  So there is lots of work for us to do.  .  [We recommend]   streamlining.  .  improve federal funding mechanisms for coordination of long‑term care, community living and integration.”

IV. Families of Children/Relatives with Disabilities Identify Elements for Action
The fourth panelist was Ms. Judie Walker (New York born, parent of young adult with a disability and healthcare needs).  She who clarified that rather than her place of employment AZ Department of Health), she was representing families of people with disabilities.  Based on her outreach to a number of other families, she stated that what she would share with NCD would represent. . .” some of the things [gleaned after she] contacted other families and young adults I know . . . [I asked them] What do you want me to say?  What do we need to share?”

Mrs. Walker stated that other families wanted her to mention the need to  “expand Medicaid in the state children's health insurance programs but look at how we might streamline the enrollment process so that people can get into it a little bit easier.”

She also shared that families/people who need and use the services have told her:
“. . .[Y]ou know, I have to coordinate with ten coordinators.  We are doing something wrong if somebody   has to coordinate their ten coordinators, there is a lot of money for coordination but we are not looking at how it is getting connected.”

In her remarks, Mrs. Walker also talked about the need to shift resources for prevention of additional disabilities and to serve people in the community who already have disabilities, particularly when states are experiencing downsizing and funding deficits.  In As a primary question she also posed: How do you make that happen, so that people don't ‑‑ when they move there isn't a shift in what they are covered for
 
Summarized below, are family recommendations critical to effective reform according the information provided by Mrs. Walker.  Overhaul policy for delivery of chronic care and long-term care; move away from the old custodial style nursing home setting; replace that with community-based models.  Improve the coordination of care – supporting provider communication.  Eliminate access hurdles such as coverage limits and lifetime insurance caps.  Recognize formally the financial, medical and social impacts of family member care giving and its contributions to the healthcare system.  Expand Medicaid in state children’s health insurance programs and streamline the enrollment process.  Find ways to simplify coordination across providers to aid family/personal navigation in user friendly culturally sensitive ways.  Look to recipients as resources, obtain their input re: experiences to improve systems.  Include in reform legislation some incentives and medical home concepts akin to American Academy of Pediatrics standards.  Continue to include families and people with disabilities in dialogues and deliberations about re-designing health care.

 “My experience with health plans especially from the public ‑‑ private sector is their perception are sometimes misguided by information that they have that they believe if they say this language, it is going to let everybody in to do 5,000 therapies a year and in reality it really won't.  But they have gotten a piece of information, and I think a lot of people on this council have knowledge that could tell them differently.”  (Mrs. Judie Walker)

V. Healthcare Insurance Coverage and Economic Downturn or Progress The final panelist was Dr. Jill Rissi (St. Luke's Health Initiative). Her area of focus was identified as research and policy . . .looking at quality of care amongst vulnerable and underserved populations.  Her work also aims to provide better understanding of “the relationship between insurance coverage, chronic conditions, health behaviors, medical debt, social and environmental determinants and . . .other variables.”
The 2008 AZ Health Survey data provide a good deal of the data for which analysis is just beginning.

Among the findings that Dr. Rissi shared with NCD were the following summary points for consideration.  While much research has been with people who are aging and demands for medical care, Dr. Rissi reported that . . . “emerging growth in disability among the youth, people particularly in midlife, merits further attention by researchers and policymakers.  It has important socioeconomic impacts.  It affects the demand for medical care, for public insurance, and people's quality of life and their ability to participate fully in social and cultural life in their communities.”  On one hand, at least in AZ, healthcare appears to be improving for people who are aging/senior at the same time that there is reason for caution.

• “Rising prevalence of chronic disease among [seniors] and near elderly that will continue to drive the gradual increases in morbidity, modest increases in health spending.  At the same time, we have these advances in bioengineering, genetics, life sciences and clinical medicine that are projected to lead to rapid advances in medical care.
• A more recent analysis by the Urban Institute projected that if the unemployment rate rises to 7%, which they are projecting even with economic stimulus it might or it likely will, that the Medicaid and state children's health insurance program enrollment would increase by 2.4 million and additional 2.6 million people would become uninsured.

Dr. Rissi posed the question of what can we say right now about coverage, conditions and access to care?  She observed out that certain conditions are on the increase across the population or specific groups (autoimmune disorders, arthritis, lupus, asthma and diabetes, to name a few).  Moreover, Dr. Rissi pointed to data regarding racial and ethnic differences that lend support to the need to address health disparities across underserved groups. 

Several findings and observations seemed to support points that had been made by other panelists, such the need to boost technology, the impact on medical debt and the overall economic outlook for the nation.  That third point calls attention to “the financial burden amongst people with multiple chronic conditions”

In the end, when jobs are lost, how people survive and thrive can be indicated by the increased enrollment in Medicaid and State Children’s Health Insurance Programs.  More specific influences on the use of healthcare were attributed to: complex relationships among factors like health coverage, chronic conditions, medication use, disability progression, obesity, educational attainment; the tie between health and broad economic factors;  impact on state budgets and local resources; relationship between chronic conditions,  access to care and the types of health insurance coverage—employer-based, state Medicaid programs, managed care for people receiving federal/state benefits, or uninsured; and medical debt.  Discussion with heterogeneous groups of people should assure that the broadest dialogue occurs before decision making about their lives.  “Good health policy is about understanding the consequences of our decisions and being willing to live with them.”  (Dr. Rissi).

Future Directions:  The design of healthcare for the future should be robust to support an array of real opportunities that enhance participation of people with disabilities in all areas of society.  Include overall actions that:  Increase community capacity to support individuals in home and community-based settings; increase grants for training direct care workers; eliminate the eligibility gap that causes individual loss of federal/state benefits for two years; and make significant investment to increase health information technology infrastructure, extending to places of residence.  America’s health care system requires national leadership to push for innovations in quality improvement, and to take actions that reduce disparities in clinical practice, health professional education, and research.; Did the panelists try to present or make recommendations for a “perfect system?  As one panelist stated aptly”:No. .  .  There are humanoids doing this.  It will never be perfect.  But an open and integrated system that is willing to change is great.”

1 Disability and Secondary Conditions http://www.healthypeople.gov/document/HTML/volume1/06Disability.htm - _Toc486927301
2 Program provides health care to over 1 million AZ residents.  The AZ prepaid model is considered in some circles to be a cost effective means of providing quality health care to Medicaid beneficiaries.
3 People who want to work but are worried about losing their medical or Social Security benefits may qualify for the freedom‑to‑work program.  There are over 107 individuals receiving acute care and 37 individuals receiving long‑term care services who receive medical and social service benefits that allows them to continue to work.
4 A national level group, Amerigroup was identified as the leading and largest publicly traded health care company (including 210,000 people with disabilities and seniors) that focuses on helping American lead healthier lives, meeting their health care needs and exclusively focuses on uninsured and underinsured Medicare and Medicaid population.
5 A conversion foundation created from the original sale of the St. Luke’s health system.
6 An example of distance learning for training purposes: CD-ROM presentations have been developed with funding from the National Institute on Disability and Rehabilitation Research to train medical students to work appropriately and effectively with patients who have developmental disabilities.  http://www.disabilityhealth.org/ 
7 Racial and Ethnic Disparities in Health Care (November 2006) http://www.allhealth.org/publications/pub_38.pdf
8  Merrill Friedman, Amerigroup Corporation, January   , 2009.

Civil Rights Committee– Lisa Mattheiss and Victoria Carlson, Co-chairs and Julie Carroll, staff

Presenter: Andrew Mudryk, Southern California Litigation Director, Disability Rights California

Mudryk is the Director of Litigation for Southern California at Disability Rights California, where he provides leadership, direction and over-all management of the advocacy work in Disability Rights California’s Los Angeles and San Diego regional offices.  Before joining Disability Rights California, Andy served as the Director of Litigation at the Arizona Center for Disability Law.  He has extensive experience litigating a variety of discrimination and disability-related claims.  Mudryk recommends whether to pass legislation or amend to ban legislation that allows restraints in education settings.  Andrew reported that the National Disability Rights Network just released a report on the use of restraints and seclusion, spotlighting abusive and dangerous (sometimes deadly) practices.  A copy will be obtained for Council members after the meeting.

Civil Rights Committee– Lisa Mattheiss and Victoria Carlson, Co-chairs and Julie Carroll, staff

Presenter: Pat Putnam, Executive Director, New Mexico Developmental Disabilities Planning Council

DD Act 2000 Funding & Reauthorization

• State budget reductions in FY 09 NM 5%:  Ca 1st highest percentage deficient FY 09 deficit: AZ 2nd highest percent deficient in Nation.  
• Deeper Reductions in FY 10 budgets for all states
• Hiring freezes have been imposed on schools, state agencies and their contractors resulting in reduced services and reduced quality of life for persons with disabilities.
• DD Councils have been basically flat funding since 2004, with continuing increased reporting requirements; the New Mexico DD Council allocation has decrease from a high of $527,000 to $510,000 over the past 5 years.  During this same time period increased reporting requirements, inflation, increase in population and other issues have greatly increased the cost of meeting the requirements of the DD Act.  Through out the south west and the west in general this strain on the funding is compounded due to:
• Vast frontier areas (Less than 1 person per sq. mile)
• Remote communities,                                             
• vast Reservation areas (Navajo Nation is equal in size to West Virginia),
• Isolated Hispanic communities from the 1500 & 1600s,
• Cross Cultural perspectives on disabilities (Native American, Hispanic)

• Increase access for tribal groups to form Councils.
• The current DD Act provides for Native American tribal areas in contiguous states equaling 200,000 persons may apply for assistance.  This has the effect of limiting access to only the Navajo Nation and excludes all other Native American nations from participating in the DD Act.  Drop “Contiguous” from the DD Act.
• Specific Self Advocacy Set Aside.  Currently DD Councils support self advocacy groups to varying degrees but all support self advocates.  In a US territory (Allocation About $260,000/yr or a minimum allotment state (allotment about $460,000/yr) There is very little available to support self advocates.  A separate specific set aside should be established so that persons with disabilities are provided the resources needed to develop self advocacy in their states so that the voice of those directly impacted are heard in the formation of disability policy and programs.
• Strengthen Non Interference Clause.  Currently the DD Act includes a non Interference Claus prohibiting the interference “of any agency, office or entity of the State will not interfere with advocacy, capacity building, and system change activities, budget, personnel, State plan development, or plan implementation of the council…) Yet with in many states the State administration continues to exert control over budgets, personnel, and the voice of the DD Council.

Increased law suits due to reduced services
New Mexico has currently 4 active law suites concerning provision of services to persons with disabilities Jackson Law Suit, Lewis Lawsuit, AP Law Suit and the Foley Law Suit.  In discussions with various advocacy organizations, it is believed that as the continued reduction of funding and services escalates additional law suits will be filed.  These law suits will drain off additional funding.  A balance must be found that directly and in a meaningful way includes the persons with disabilities, families and advocates in redesigning the service delivery systems so that the pending changes are made to best meet the needs of those receiving services..    

Availability and Skill Levels of Professionals and Direct Care Staff

• Pre service and in service training (more experiential training)There is a growing shortage of professional and direct care staff throughout the southwest and nation.  Training programs often focus on the theoretical aspects and do not provide sufficient practical functional training.

• Lack of Professionals
1. Autism / DDMI - lacking professionals and direct care staff in both areas
2. Special Ed Teachers – Many uncertified teachers still in classrooms
3. Ancillary Providers – General shortage
   
   
• Attendant and Direct Care Staff
  1. Salaries & Benefits   Salaries $6.50 to $10.00 per hour no benefits
  2. Professionalism, Training, Career Lattice No professional career development for direct care staff.

Self Advocacy - Nothing about us without us
As services are reduced persons with disabilities and families must be at the table.
Funding is needed to support their voice.  Voice needed to impact state and federal            action/lack of action and assure alignment of expenditures with needs of the population.

Transportation

1. Without transportation accessibility to housing, medical care, employment and the community in general, independence and community integration is not possible for persons with disabilities.
2. Vast rural and frontier areas and major cities through out the South West have little to no public transportation available.
3. When public transportation is available, there are limited routes and times when the transportation is available.  Often public transportation stops by 6 or 7 pm and does not run on the weekends.  This seriously limits employment and social interaction opportunities.
4. To this day, many public transportation systems are not fully accessibility.  Some buses do not have lifts or wheel chair tie downs. 
5. There are currently state plans for the various transportation set asides but more often than not, there is little to no coordination of these plans.  Often these funds are used to purchase and maintain transportation for a senior center or a disability program.  The vehicle then sits dormant for the majority of the time.  These funds should be brought together and utilized to provide a transportation system that would serve the broader community as opposed to a single program.
6. Transportation set asides include but are not limited to:5307 Urban Formula Funds,
   5309 Discretionary Funds, 5310 Elderly & Disabled, 5311 Rural, 3037/5316 JARC funds

Employment

1. 37% of persons with disabilities employed in NM 63% are not employed
2. Persons with disabilities are the first to be down sized in weak economy
3. In an effort to save money, states are reducing attendant care hours.  This is short sited in so much as with out the needed attendant care some people with disabilities are unable to continue employment, therefore they are more dependant on governmental assistance and are no longer contributing to the tax rolls at state and federal levels. 
4. Poor job matches – Very often people with disabilities are placed in what ever job is available and no consideration is given to  align job placement with the individual’s preferences or abilities.  This results in the individual having little to no motivation and added failure in their employment efforts and disappointed employers who are no longer willing to hirer persons with disabilities. 
5. Many Vocational Rehabilitation (VR) programs nation wide have declining budgets.  This results in what is Called “Order of Selection”  This provides preference for persons with more significant disabilities but also creates a waiting list for employment services to the point that some persons with disabilities may wait years to get assistance with employment
6. States are unable to provide full state VR match and are losing federal dollars.  VR New Mexico has not drawn down their full federal allocated match for a decade.  This results in limited funds and the above mentioned “Order of Selection”  
7. Supported employment & employment training programs are weak and additional investment by  Rehabilitation Services Administration  and the Office of Special Education are needed

 
Education

1. States are unable to shoulder financial burden for IDEA, It is hoped that the new administration will fully Fund this Act.
2. Autism =; within the last 3 years the incidence rate of Autism Spectrum Disorders has risen form 1 in 2000 to 1:100 and continues to increase.  Significant attention and resources are needed to train personnel, and develop service delivery for this population.
3. Schools closing, School personnel contracts terminated.  Due to the increasing fiscal decline, we are seeing small schools district struggling to remain solvent.  Some mid size to larger districts are cutting position and the state is cutting in service days and increasing classroom enrollment size.  Fewer educational assistants are being provided in cases where the need for additional personnel is identified in the IEP.

           
Housing

1. All government supported housing should be built with universal accessibility design.  Currently Government housing requires a small percentage of units or homes to be handicapped accessible.  All units and homes built with Government assistance should be accessible.  Not to do so makes persons with disabilities prisoners in their own homes because they can on enter the other homes in the immediate living area.
2. All new housing should be built with universal accessibility design.  Let us be proactive.  Today you may not need an accessible home but we are all one accident or illness away from needing accessible living arrangements. 

Health Coverage – Uninsured

1. End Waiver Waiting list – There are currently hundreds of thousands of persons waiting to receive services through the various Medicaid waiver services.  Through Self Directed Services and Money Follows the Person, these numbers could be reduced.  Making the delivery of services to persons with disabilities a basic service in the Medicaid state plans would end the option of making people with disabilities wait for as much as 15 years before they receive services.

2. Habilitation & Rehabilitation Any new health care program should include Habilitation as well as rehabilitation.  Habilitation for example would provide a person with spasticity to continue to receive OT or PT to keep the muscles loose and able to write, walk etc.
3. Pre Existing Conditions - Any Health Care programs should not be allowed to exclude persons with existing condition.  This results in persons with disabilities being unable to be insured
4. Lack of Medicaid & Medicare Codes to fund services needs of Persons with                     Autism & DDMI – The service provision for persons with Autism and/or co-occurring Mental Health (MH) and Developmental Disabilities (DD) is complex and often requires both DD and MH professionals to fully evaluate individuals, develop services delivery plans and deliver services.  New Codes to meet these long time un and under served populations. 
5. Increase Limit on Savings and do away with Marriage Penalty – Currently a person with a disability will lose their Medicaid or Medicare benefits if they save more than $2000.  If two persons with disabilities are married, they can save only $3000.  This locks persons with disabilities into poverty unable to purchase a car or a house.  These limits were set in the 1960 and need to be adjusted to the current economic levels.
6. Catastrophic vs. Prevention and Basic Medical Coverage – Currently catastrophic coverage is available in some states, but the cost of preventative and basic coverage is either too expensive or unavailable to persons with disabilities.
7. FMAP Changes are being considered by the federal government.  States are reducing their investment in these programs so that there is no increase in the total funding for the Medicaid programs.  States should not be allowed to supplant the total increase in federal dollars so that these increases in federal dollars have the intended impact of flowing additional funds into these much needed programs.

The following information is a compilation of 18 western states: AK ARK AZ CA CO ID KS LA MT NE NM ND NV OK SD TX UT WY

Civil Rights Committee– Lisa Mattheiss and Victoria Carlson, Co-chairs and Julie Carroll, staff

Presenter: Barbara Brent, Assistant Director, Arizona Department of Economic Security, Division of Developmental Disabilities,

Brent, M.S., is the Assistant Director of the Arizona Division of Developmental Disabilities, which provides supports to almost 30,000 individuals with disabilities and their families using a unique managed care system that bundle acute and long term care services.  Ms. Brent has been honored to work in the field of disabilities for almost 30 years in a variety of capacities such as case management, employment services, education coordination and providing training and technical assistance to the state agency director.  She enjoys community building and systems change.  Ms. Brent’s presentation centered on Arizona's unique systems of services.  Arizona uses an 1115 waiver to provide both acute and long-term care services and supports to people with developmental disabilities and their families throughout Arizona.  Well over 85% of individuals supported in Arizona live with their families or in homes of their own.  Learn about the advantages of this unique systems design as well as the important considerations in making sure that each individual is seen through person-centered eyes.  There was also discussion about the enormous pressures facing state agency leaders during difficult economic times.  Barbara discussed the gaps in health coverage that occur for people with disabilities during transitions.