August 2009

August 07, 2009

A Meeting with the President

By Polly Arango

Polly Arango, Family Voices founder What's it like to meet across the table from President Barack Obama? How does something like that happen?

In mid-July, Kareem Dale, President Obama's Disability Advisor, invited me and 11 other disability advocates to a private July 24th meeting to discuss disability issues with the President, to be held on the 19th anniversary of the Americans with Disability Act (ADA) and just before the US signing of the UN Convention on the Rights of Persons with Disabilities. The group included leaders from the deaf, mental health, independent living, blind, cognitive, physical, and global disability communities. I was the only advocate specifically representing children with disabilities and families. The group was led by Andy Imparato of American Association of People with Disabilities (AAPD); Toney Coelho, former congressman with epilepsy; and Marca Bristo, veteran disability activist.

Through many emails and teleconferences, and then in person just before going to the White House, the group agreed that our priority was to introduce the President and his staff to broad disability issues, especially human rights, including inclusive education, and health care that includes community-based and long-term services works for children. I tried to make sure that "child" and "family" were included in the presentations made by our spokespersons, Marca, Tony, Andy, and Bob Williams.

We were joined in our White House meeting by Kareem Dale and other staff. We also shared a lively dialogue with Attorney General Eric Holder and Secretary of Labor Hilda Solis about civil rights, youth employment, and a healthy disability community. Both took notes and promised follow-up meetings.

President Obama arrived and greeted each of us, patting Mike May's guide dog, squeezing behind wheelchairs, remarking on Bob Williams' communication device. It is clear that the President understands the broad reach of disability: "Almost everyone in this world either has a disability or loves someone with a disability," he said in his later UN remarks. The President emphasized his determination to get meaningful health reform enacted, acknowledging the importance of access, affordability, and community-based long-term care. When we suggested meeting with Department Secretaries and appropriate agency heads, the President appeared supportive. He also said he would consider our request for a 2010 White House conference commemorating 20 years of progress of the ADA.

The advocates had agreed that this first gathering would be successful if President Obama seemed engaged and if there would be future meetings. As we followed the President to the East Room for the UN signing, our hopes seemed realized. It is a new day. A hopeful era. I will keep you posted. Note: To read President Obama's remarks on the signing of the UN Convention on the Rights of Persons with Disabilities Proclamation, visit the White House website.


Family Leadership in the States

Family Leadership in the States

heartMARYLAND: Meeting the Needs of the Latino Community: ¡Padre, Tú Puedes! Conference

Parents Place of Maryland A need, an idea, and a plan-and a unique conference opportunity is born! Josie Thomas, Executive Director of The Parent Place of Maryland, realized that in an area with a growing Hispanic population-including families with children with special health care needs-there had never been a conference just for Spanish-speaking parents. Eighteen months later, after planning, networking, and building strong partnerships, more than 80 parents and presenters met at the Holiday Inn at College Park, for a one-day event of speakers, breakout sessions, and resources, all in Spanish.

Zaylimar Bocanegra, Latino Outreach Coordinator, described the planning process, "One of the first things we did was to recognize we should not try to do it by ourselves. It was beneficial to get other agencies and groups of people involved." Partners included the Maryland Department of Health Office for Genetics and CSHCN, Prince George's County Infants and Toddlers Program, the Maryland Disability Law Center, and the Maryland Developmental Disabilities Council.

Partners helped spread the word to Hispanic families they served through distribution of flyers, phone calls, and even a radio spot by Zaylimar on a Hispanic station. Online-free-registration made it easy for parents to sign up. After an introduction in newly-learned Spanish by HRSA representative Diana Denboba, the keynote speaker was Mercedes Rosa, from SPAN of NJ. In addition to a great selection of session topics-including one just for dads-parents could spend time in the Resource Room, a one-stop place to meet representatives from 10-15 groups with Spanish materials to share.

¡Padre, Tú Puedes! Conference Participants

The conference was an overwhelming success. The only negative comments on evaluations were from attendees who were disappointed that they could not be in all sessions at once! The committee hopes to build on the success of this conference with future events, providing funding can be found.

"The strength of this was the partnership-everybody on the committee contributed to parts of it. If someone said they didn't have money for an idea, someone else stepped up and offered to pay for it," commented Josie.

"It was hard work, but worth every minute!" Zayli summed up.

For more information about Parents Place of Maryland, go to their website.

Editor's Note: Information for Spanish-speaking families of children with special health care needs is availalbe on the Champions for Inclusive Communities website.

Legislative Corner
Legislative Corner

heartFamily-to-Family Health Information Centers (F2F HICs)

Family-to-Family Health Information Centers As reported in last month's Friday's Child, the FV Policy Team and many FV members continue to work hard to ensure that funding for Family-to-Family Health Information Centers (F2F HICs) will continue past the end of the Federal Fiscal Year 2009. Although funding was not provided in the annual appropriations bills developed in the House or Senate, there is still hope that we can get funding through health care reform legislation in the Senate Finance Committee. Many in the FV network have been letting their Senators know how important this program is to children/youth with special health care needs and their families. Visit the Family Voices website to learn more about the steps you can take with your Senator while they are in their home district for the summer recess.

heartHealth Care Reform

Since the last update, the last of three relevant committees -- the Energy and Commerce Committee -- reported out a bill just before the House adjourned for its August recess. In order to get the bill out of committee, however, its scope was made more modest (e.g., lower subsidies for purchase of health insurance, more small businesses exempted). An important amendment offered by Diana DeGette (D-CO), and supported by Family Voices and a number of other organizations requires the Department of Health and Human Services to ensure Congress that private health insurance plans provide adequate benefits before children can be transferred from the State Children's Health Insurance Program (SCHIP) to a private plan. At this point, House leaders will need to craft a merged version of the three committee bills to be taken up by the full House when it reconvenes in the fall.

In the Senate, key members of the Finance Committee are still attempting to develop a bipartisan proposal, postponing committee consideration of legislation until after the August recess.

The FV Policy Team is working with other child health and disability organizations to ensure that the circumstances of children with special health care needs are taken into account as health care reform legislation moves along.

Note: Family Voices has a new Platform on Health Care Reform that identifies our position on affordable care, comprehensive benefits, and family-centered health systems that must be included in health care reform to meet the needs of families. Download the Family Voices Platform on Health Care Reform from our website.

If you have any questions about these or other federal issues, please feel free to contact the Public Policy Team -- Brooke Lehmann and Janis Guerney.

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News You Can Use:
Resources and More

checkbox New Medical Home Website
The Center for Medical Home Improvement (CMHI) has a new website, , whose purpose is to "spread awareness of the importance of a medical home, develop supports for primary care physicians to implement a medical home, and align state and national efforts toward the implementation of medical homes everywhere."

checkbox Peer Assisted Health Initiative
Read about Rhode Island's Parent Information Center's new Peer Assisted Health Initiative, offering support to others with chronic disabilities and special health care needs in the their Summer 2009 issue of their newsletter, Networker.

checkbox Health Reform and Adolescents
Two friends of Family Voices, Harriette B. Fox and Margaret A. McManus, of the National Alliance to Advance Adolescent Health, have put together an issue brief documenting the significant health risks of adolescents and the obstacles to appropriate care access. It urges Congress to provide comprehensive coverage for all low and moderate income adolescents to age 21 through grants and other funds.

News From Family Voices

checkbox Wanted: Family Photos for 2010 FV Calendar and Other FV Publications!
It's that time again! We want photos of families and of family members! We want parents and their children together! We want extended family! We want photos of children and youth! We want photos from ALL SEASONS of the year! Please send your family photos, suitable for publishing and wide distribution, to Rachel Rodriguez for inclusion in the 2010 Family Voices calendar and other publications. Ask Rachel about a photo release if you don't already have one on file.

checkbox Conference Listing
Looking for opportunities to travel, learn, and network with other family advocates? Bookmark Family Voices' conference listing page and check it frequently!

checkbox First Edition of KASA Connection
KASA - Kids as Self Advocates - now have their own newsletter. Visit the KASA website to download the newsletter to get the scoop on the latest activities of the KASA Advisory Board, their 3-year goals, and their advocacy experiences.


From Our National Partners

Genetic Alliance
Genetic Alliance

Check out these new resources from the Genetic Alliance:

  • Create personalized Health History booklets to start conversations about health in your family and community
  • Check out a free reader-built guide and advocacy community devoted to starting and building an advocacy organization.
  • Download documents, links, audio, and video files in topic areas such as newborn screening, family health history, genetic testing, reimbursement, research, drug development, community engagement, and organizational development from the Resource Repository, "digital commons for the global health community" providing a wealth of community-contributed resources.
  • Participate in or replay archived webinars on a variety of topics.

Catlyst Center
Catalyst Center

The Catalyst Center, funded by the Maternal and Child Health Bureau to "work with stakeholders to improve health insurance and financing for children and youth with special health care needs (CYSCHN)," has two new briefs that examine the needs of CYSCHN in health care reform:

Don't miss reading Meg Comeau's blog, "Children's Special Health Care Needs Can Bankrupt Families". Meg is the Project Director of the Catalyst Center.

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August is  Children's Eye Health & Safety Month

August is National Immunization Awareness Month

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Toll-Free: 1-888-835-5669 "Adolescents are the bearers of cultural renewal, those cycles of generation and regeneration that link our limited individual destinies with the destiny of the species."
-- Louise J Kaplan