Youth Advisory Committee Summary Minutes – August 14, 2007

Initial comments by the Designated Federal Official (DFO) included a brief review of Federal Advisory Committee Act provisions that affect the conduct of meetings of the committee. This included open/public transaction of business and the need for DFO approving the agenda, calling the meeting to order or adjourning the meeting and determining public participation. (See the NCD Federal Advisory Committee Act Primer at http://www.ncd.gov/newsroom/advisory/act/fac-act-index.htm  and/or read the full act at http://www.ncd.gov/newsroom/advisory/act/fed-advisory-act.htm.)

Procedural Summary: 

After the DFO (Dr. Gerrie Hawkins) requested the Secretary, Reagan Lynch to call the roll, she introduced and welcomed Victoria Ray Carlson from Naperville, IL as the new NCD Council Member Liaison to the committee.  Ms. Carlson expressed both her appreciation that the NCD Council Chairperson provided the opportunity to serve and her eagerness to work with and be available to the committee for consultation.  Dr. Hawkins also thanked the YAC members for their patience during several months while the agency has been experiencing a period of transition. She then transferred leadership of the meeting to the YAC Chair, Stephanie Orlando. Ms. Orlando noted that both full committee and executive level discussions have taken place to find ways that the committee can better utilize the mentors. She reported about discussions among the executive team members and mentors regarding ways to move the committee work forward during the period of transition at the agency. Ms. Orlando also acknowledged the outstanding assistance provided to the committee over the last five years by Mr. Marco Rodriguez who served as Council Liaison. It is thanks in part to the efforts of Mr. Rodriguez working with the DFO and intervening with the Council that the committee is where it is today in terms of leadership opportunities and visibility.

Michael Murray reported about the outreach/networking procedures. As a follow up action to the 1996 NCD publication "Achieving Independence: The Challenge for the 21st Century," the YAC has identified Disability History Awareness as an important issue for youth with disabilities in our nation. When youth participants discussed this topic at the July 2006 Next Generation Roundtable that YAC hosted, NCD Council members expressed interest and encouraged YAC investigation of the topic. We are aware of state youth groups that have been actively working toward a mandate that will require schools to incorporate disability history in their curriculum. The paper will describe the need for and the benefits of including disability history curriculums on any/all educational levels.  We will specify in this paper how important it is to make sure that the curriculum that is able to be achieved is ability focused, promotes anti-discrimination and anti-bullying for young people with disabilities, and speaks of the civil-rights movement of people with disabilities.  Additionally, as part of a proposal under the for 2007/2008 plan, the YAC will write a letter or other appropriate document to NCD with recommendations for specific federal agencies and/or White House collaboration on federal level action to support need for increased attention to disability history awareness.  Several methods of gathering information will be utilized by the YAC to formulate this and other recommendations.  The YAC will assure that any information gathering methods utilized in this project will follow federal requirements for collecting data and the paperwork burden.   

Policy Summary: In response to an NCD staff request that the committee to submit a list of proposed topics FY 2009 for consideration during Council strategic planning, the following topics and rationale were identified by the committee during a procedural call and were presented to the council at the July quarterly meeting in Chicago, IL.

Education Access: 

1. The idea of studying abroad has been on the rise over the last five years, but there is currently only one organization dedicated to helping students with disabilities study abroad. We would like to see the YAC take a lead roll and work with NCD on a project studying disabled students and their access to study abroad programs.

2. Today many youth across the country are being told they are “graduating high school” with an “IEP diploma.”  These students later find out that it is not a recognized diploma and that they would have to receive a GED in order to move on to higher education or gain employment. We urge the NCD to review of the IEP process and evaluate the “IEP diploma” dilemma.  Also, we believe young people should be involved in their own educational planning.  We ask the NCD to review the obstacles and regulations that could prevent youth from having input into their own IEP process.

Educational Outcomes:

1. NCD should work to promote strong accountability enforcement for students with disabilities under No Child Left Behind particularly in reference to the Adequate Yearly Progress calculations.

2. The year 2009 will mark the fifth anniversary of NCD’s Higher Education report, we would like NCD to revisit this report and research current issues that students in college are facing (See letter to Senate Health, Education, Labor and Pensions Committee at http://www.ncd.gov/newsroom/correspondence/2004/gregg_03-03-04.htm and/or read the full report at http://www.ncd.gov/newsroom/publications/2003/education.htm.

Rights and Advocacy:

1. Encourage increased self-advocacy representation at all levels of the public policy process.  Guidelines should be developed to promote effective self-advocacy and self-advocacy representation in organizations and agencies receiving federal funding. The rise of a stronger self-advocacy community serves the interests of all stakeholders in the policymaking process related to disability issues.

Americans with Disabilities Act:  Erosion of the ADA is a concern. As young people, we are the generation who grew up with the ADA. Youth have a unique perspective on the rights and protection the ADA provides. As the future of this country is addressed, input from young people would be imperative.  The YAC wants to see the ADA strengthened not weakened.

Awareness:  The YAC recommends incorporating disability awareness/anti-discrimination into already funded anti-bullying campaigns.

Carly Fahey’s policy workgroup update included two projects. First, healthcare is again becoming one of the biggest issues being discussed in our Nation today. The YAC paper is expected to provide a background for the committee’s recommendations to NCD on how children and youth are currently treated in the United States health care system and how they access the system through anecdotal stories, best practices for parents, caregivers, and doctors, and recommendations to the National Council on Disability. The YAC will look at several methods to gather information to be able to make appropriate recommendations. As NCD wrote in its annual disability policy progress report in 2006 “…access to health care is more than just a medical matter. Virtually every facet of children’s lives is influenced, if not determined, by access to preventive, diagnostic and treatment services”. However, many children and youth have trouble accessing health care not only because of restrictions that are set by states for the SCHIP and Medicaid programs, but more importantly access to health care services that are covered by the American’s with Disabilities Act of 1990. This includes access to medical documents, second class treatment by medical professionals, the ability to receive important insurance information, and the ability to actually reach a medical facility. This project will provide a youth perspective on access to quality health care.

The rationale for a second policy workgroup process is to follow up certain aspects of the NCD report titled “The Civil Rights of Institutionalized Persons Act (CRIPA): Has it Fulfilled Its Promise?” YAC’s work will offer the youth perspective on the current use of aversive treatments and restraint with the overall purpose of providing recommendations to NCD. Frequently these practices are used as forms of treatment for individuals with disabilities and reportedly can represent some of the gravest abuses against youth with disabilities, often inflict lasting although unplanned harm on youth with disabilities. Research can compare aversive treatments to positive behavioral techniques. In light of the continued number of deaths and injuries related to some instances of use and abuse, the YAC thinks that further investigation of the pros and cons, and search for promising practices may be needed. YAC recommendations will be based on research, current state policies and input from young people who have experienced restraint and/or aversive treatments.

Announcements/Comments: 

• Commenting on a White House release of the 2007 New Freedom Initiative (NFI) Gary Goosman thanked President Bush for his continued support of the civil rights of people with disabilities through NFI and the inclusion of the YAC in the 2007 progress report that challenges the YAC to present findings on issues that young people face in preparing for their futures. Along with other members of the YAC, Gary expressed hope that the YAC report submitted to NCD at the public quarterly meetings in April and July of 2007 on benefits planning would be posted soon since it meets the administration’s challenge to the next generation. The 2007 NFI report can be found at: http://www.whitehouse.gov/infocus/newfreedom/newfreedom-report-2007.html
• YAC’s July procedural call provided opportunity to dialogue with NCD’s new Executive Director, Mr. Mike Collins and a presenter on 21st Century professional networking was Mr. Ollie Cantos, U.S. Department of Justice Special Counsel to the Assistant Attorney General for Civil Rights.
• Seven YAC members will be participating in an official capacity at an upcoming DC area conference on youth development and leadership called, “Blazing the Trail.” Appreciation goes to NCD federal partners for bearing the cost of YAC member participation.
• A number of YAC members also were selected to participate in the Department of Transportation’s, “Transit Talk” conference which was held in Washington, DC. 
• Former YAC member Sara Bianco was a public comments participant at the NCD Chicago quarterly meeting in July 2007 where NCD released two ADA reports now available on the NCD Web site. YAC members are urged to attend NCD meetings opportunities in your region of the country and invite other youth to participate around the country.
• The DFO announced that the next NCD quarterly meeting will be in Boston, MA from November 29 to December 1 at the Hyatt Regency.  The next YAC public meeting is on September 25, 2007 at 3:30pm ET and elections results will be announced for new YAC officers.

The meeting was adjourned by the DFO.

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