Office on Disability

Report on Constituency Expert Input Meeting—April 12, 2006

Department of Health and Human Services
Hubert H. Humphrey Building
Office on Disability Room, 637D
200 Independence Avenue SW
Washington, DC 20201
www.hhs.gov/od/

Introduction

The U.S. Department of Health and Human Services (HHS) Office on Disability (OD) held its seventh Quarterly Constituent Meeting in the Hubert H. Humphrey Building on Thursday, April 12, 2007. The meeting, which was attended by over 40 constituents in-person and by phone, was an opportunity for representatives from organizations serving America’s 54 million citizens with disabilities to learn about current OD strategies to achieve the goals of the Surgeon General’s Call to Action to Improve the Health and Wellness of Persons with Disabilities from Dr. Margaret Giannini, M.D., F.A.A.P., Director of the Office on Disability, and discuss ways in which their organizations can contribute.

The Call to Action (CTA), which was written by the OD and the Office of the Surgeon General,has four primary goals relating to the health and wellness of persons with disabilities:

GOAL 1: People nationwide understand that persons with disabilities can lead long, healthy, productive lives.

GOAL 2: Health care providers have the knowledge and tools to screen, diagnose and treat the whole person with a disability with dignity.

GOAL 3: Persons with disabilities can promote their own good health by developing and maintaining healthy lifestyles.

GOAL 4: Accessible health care and support services promote independence for persons with disabilities.

The constituents present and on the phone participated in a discussion led by Dr. Giannini in which they considered how their organizations can promote the goals and messages of the CTA at conferences, on their websites, in newsletters, and in other forums.

Dr. Giannini opened the meeting by welcoming those in attendance and thanking them for the integral support many provided in the development of the CTA. She introduced the CTA and its goals and explained that partnership from disability advocacy organizations is essential in achieving the CTA’s goals. Finally, Dr. Giannini suggested a number of ways for advocacy organizations to contribute and opened the meeting for discussion.

Meeting Summary

The following provides a summary of Dr. Giannini’s update and the suggestions of the disability constituency organization representatives who attended the meeting.

Background and Update on the Call to Action

The CTA was written to bring attention to the enormous health disparities faced by persons with disabilities in the US, present a vision for the future in which barriers to health and healthcare have been torn down, and promote positive health messages for persons with disabilities. This document, the first of its kind, is supplemented by the People’s Piece, which contains the major points of the CTA written at a sixth grade reading level in order to be accessible to a larger public audience. A great deal of effort was put into the creation of the CTA and the People’s Piece. Much work remains in the implementation of these documents’ strategies.

With the publication of the CTA, the OD convened four workgroups of Federal and non-Federal experts; each was tasked with developing a strategic plan to achieve one of the four goals of the CTA. These workgroups have done an excellent job. The OD is now ready to implement the CTA Strategic Plan with input from the constituent organizations.

A number of action steps have already been developed and initiated. The action steps cover a broad array of topics and include targeting health care providers, and especially physicians and nurses, to incorporate disability issues in provider training curricula. Opportunities to address portrayals of persons with disabilities in the entertainment and media industries are also being explored.

Dental care is an example of a pressing health care issue for persons with disabilities that is addressed in the CTA Strategic Plan. Dental illness is one of the primary secondary conditions, but dentists often do not want to treat persons with disabilities and insurance coverage is difficult to obtain. Therefore, identifying how to include dentists in the CTA Strategic Plan is key.

The OD is seeking your input as disability advocates regarding opportunities to promote the goals and messages of the CTA at conferences, in newsletters, on websites, and in other venues. The following information was provided on contacts, events, and organizations that the OD can explore to further the CTA’sgoals.

After Dr. Giannini’s introduction, discussion was opened regarding opportunities for promotion of the goals and messages of the CTA and potential partnerships.

Suggested OD Opportunities/Action Steps

The open discussion led to the following recommended opportunities and action steps:

Conferences

Meeting participants identified a number of upcoming conferences that would be effective venues for promotion of the goals and messages of the CTA. The conferences are:

Family Voices 15th Anniversary Gala Celebration & National Conference (May 24, 2007)
VOR 2007 Annual Meeting (June 9, 2007)
National Council on Independent Living Conference 2007 Annual Conference (July 9 – 12, 2007)
National Academy for State Health Policy Annual State Health Policy Conference (October 14 – 16, 2007)

Conference Calendar / Speakers Bureau

In addition to specific conference opportunities, meeting participants suggested that the OD create an online Conference Calendar and Speakers Bureau. The Conference Calendar will serve as an interactive resource through which constituent organizations can make conferences and other events known to the disability advocacy and policy communities.

The Speakers Bureau will contain a compilation of speakers known to effectively communicate key disability-relevant messages, such as those of the CTA, to diverse audiences. The Bureau will be an interactive website that will serve as a source of ideas for speakers for conferences on the Conference Calendar as well as other events within and outside of the disability community.

Organizational and Informational Linkages

The OD would like to foster greater linkage with constituent organizations to facilitate communication and coordination. Ideas to promote these organizational and informational linkages include creating links on the OD website to disability constituent organizations, having disability constituent organizations create links to the OD on their websites, distributing organizational newsletters through the OD mailing list and the OD newsletter through constituent organizations’ lists, and supporting the LEND program at AUCD.

New Contacts

A diverse group of new possible partners was suggested. The OD is in the process of contacting these partners to discuss working together toward the attainment of the goals of the CTA. The partners identified at the meeting include:

Entertainment Industry Foundation
Ad Council
National Science Foundation
National Association of Healthcare Journalists
Corporation for Public Broadcasting
Council on Foundations
Kaiser Family Foundation
Christopher and Dana Reeve Foundation
National Youth Leadership Forum
HSC Foundation
Business Leadership Forum

Closing

Following the comprehensive discussion that generated these ideas and action recommendations, Dr. Giannini thanked the participants for their attendance and contributions. She emphasized that moving forward to improve the health and wellness of persons with disabilities across the nation will require strong partnerships across government and advocacy organizations, and adjourned the meeting.

The next Office on Disability Quarterly Constituent Input Meeting will be on June 20 from 10:00am until 12:00pm.