September 2009

September 09, 2009

The Power of Planning: Oral Health Partnerships in Kansas

Parent and Child What began as a community initiative based on a CATCH access grant in Wichita, KS has become a statewide effort to ensure that children with special health care needs have access to appropriate oral health services. Marcia Manter, Community Development Specialist with Oral Health Kansas, explained that Cathy Weno, DDS, JD wrote the grant with HRSA to focus on establishing a clinic in Wichita and to establish parent education throughout the state. Dr. Weno included Families Together, Inc. (KS F2F HIC) as a partner. She used plans she had developed-"so rich in information, so well-founded in data and reality"-to become the foundation for the grant. This is the second year of a four-year grant.

Connie Zienkewicz, Executive Director of Families Together, and Marcia make a dynamic team for spearheading creative oral health initiatives. For example, community leaders partner with independent health centers to bring dental services to family-oriented conferences. While parents attend conference sessions, their children receive fluoride varnishes as well as practical oral health necessities like toothbrushes and toothpaste.

Families Together has created a Caring Notebook for the families they serve. An entire section is devoted to oral health to help families track appointments and provide tips on preventive care as well as specific information for youth who are attending the transition conference workshop on oral health.

Connie added, "One of the things that has helped push the initiative for people with disabilities is that the state legislature has approved dental care with our waiver system to help fill a big black hole for the 18- to 21-year olds." Not many dentists have been willing to take young adults over the age of 18 with disabilities for preventive and restorative care, so this is important legislation.

"One of the exciting changes we're seeing is that Kansas is expanding our dental safety net clinics, sometimes waiving costs. Dentists who are choosing to serve in these clinics are highly experienced, as are the dental hygienists on staff," Marcia said. "We're working for access across the state." Dental hygienists take services into the community as well-they work with schools, Part C, Head Start, etc.

Marcia described another innovative approach to oral health for children with special needs. "We're giving parents a two-page pre-appointment form that asks about medications and the last dental appointment. The second page asks what kind of behavior and supports that the child needs to be comfortable in the dental setting-how long can they stay in the waiting room? Do they need a blanket or perhaps someone to help translate or communicate? It builds a kind of behavioral history that improves communication between the young person, the family, and the dental team." Marcia added, "This approach reduces the number of young children who have to be sedated for dental work. We use the same form for adults with disabilities with a goal of a continuum of specialized care. Our goal is always prevention."

Connie and Marcia make a powerful team for the state. Marcia said, "We are very humble. We don't know all the answers, so we go to workshops, listen for the knowledge and experience of families, caregivers, and children with disabilities, and we offer what we know about oral health to find a common ground of shared knowledge."

Connie agreed. "It's hard not to be humble. We all know our corner. Sharing information and seeing parents as the experts continues to be the way we practice in the field."


Legislative Corner
Legislative Corner

heartCHIP Oral Health Provisions
By Betsy Anderson

As most know, in February President Obama signed the reauthorization for the Children's Health Insurance Program (CHIP), an exciting development for all who care about children's health. For the first time, national mandatory provisions were included for oral health.

It is likely that Medicaid will release regulations for different provisions over the next few months. Meanwhile, family advocates can be planning ahead to:

  • Provide information about the CHIP oral health provisions now and as the regulations become available
  • Participate with oral health providers and advocates in states to develop information, local or state programs, and to address other oral health initiatives
  • Join with oral health advocates in states to enact the dental wrap option to provide oral health coverage for children whose CHIP-eligible families have medical but not dental insurance

A succinct two-page information sheet detailing the CHIP oral health provisions is available from the Children's Dental Health Project (CDHP). Go to the CDHP website and search for "Renewed Support for Children's Oral Health" to find this resource.

CHIP has eight dental health provisions, with the four that follow likely to be of particular interest to families (Edelstein, B. & Booth, M., Children's Dental Health Project, February 2009):

Dental coverage guarantee
Requires that states provide dental coverage for CHIP beneficiaries "necessary to prevent disease and promote oral health, restore oral structures to health and function, and treat emergency conditions."

Dental wrap-around option
Allows states to provide dental coverage that "wraps" around commercial medical coverage for children who are eligible for CHIP and who receive private medical but no dental insurance

New parent education
Establishes a requirement that parents of newborns be informed of risks for early childhood caries [tooth decay] and its prevention.

Mandatory information for beneficiaries
Requires that enrollees have ready access to information on dental providers and on the dental benefits contained in their insurance through such websites as the Insure Kids Now website and hotline (1-877-KIDS-NOW).

The Children's Dental Health Project has a new side-by-side comparison of oral health provisions in both the Senate Health, Education, Labor, and Pensions Committee (HELP) and House bills.

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News You Can Use:
Resources and More

checkbox Oral Health Session from Family Voices 2009 Conference PowerPoint Available
Three PowerPoint presentations from the 2009 National Family Voices Conference session entitled "Oral Health and Financing for Oral Health" held in Washington, DC, last May, are available on the Family Voices conference website.

checkbox Bright Futures Family Matters Oral Health Issue
The summer 2009 issue of Bright Futures Family Matters newsletter focused on oral health issues. To read this edition, click here.

checkbox Bright Futures Oral Health Family Information Sheet-Reviewers Welcome!
As part of the ongoing revision of the Bright Futures Family Pocket Guide, a family oral health two-page information sheet has been created. If you would be interested in reviewing a draft of this document, contact Betsy Anderson.

checkbox AAP Offers New Oral Health Curriculum
The American Academy of Pediatrics, in recognition of the importance of oral health in overall health and well-being, has designed a new training guide, "Protecting All Children's Teeth (PACT): A Pediatric Oral Health Training Program," to educate pediatricians, pediatricians in training, and others interested in infant, child, and adolescent oral health. To learn more, click here.

checkbox Kansas Oral Health Online Continuing Education Course: Healthy Smiles for CYSCHN
The Kansas Oral Health grant (see above) has designed a free online continuing education course for dental and medical staff, therapists, and family members to explore the issues involved in oral health for CYSHCN. To check out "Healthy Smiles for CYSHCN. The website has a wealth of tips and resources in addition to the course information.

checkbox Children's Dental Health Project Update-Subscribe
Also very useful is the Children's Dental Health Project's Dental Policy Check-up which tracks and summarizes (in brief, readable form) oral health developments for CHIP and Health Care Reform. To subscribe to this update, click here.


Special Feature:
Family Voices Remembers Senator Kennedy

Albuquerque, NM, August 26, 2009-Sophie Arao-Nguyen, Ph.D., Executive Director, Family Voices, Inc., shared these thoughts today on the death of Senator Edward M. Kennedy:

Family Voices and families of children and youth with special health care needs and disabilities everywhere mourn the passing of Senator Kennedy, a friend to many and a stranger to no one who cares deeply about children and families.

Sen. Kennedy and Grace and Becky Sisco

Throughout his years of public service, Senator Kennedy repeatedly did what few have been able to accomplish-moving freely down the aisles of Congress, a fierce advocate and skilled negotiator, uniting many behind the shared vision of health and wellness for all. This was never more evident than in the many pieces of health, education, and social legislation he authored over the years, especially those that have impacted families and children and youth with special health care needs: the Americans with Disabilities Act (ADA), the Ryan White Act, the State Children's Health Insurance Program (SCHIP), the Family Opportunity Act of 2005 (creating legislative funding for Family to Family Health Information Centers in all the states and the District of Columbia) and the Medicaid Buy-In.

Betsy Anderson, Family Voices, recalls, "He was very, very committed to the Family Opportunity Act (FOA) - you could hear his voice when it passed - he was jubilant! One of the hallmarks of Senator Kennedy was that he took a personal interest in issues and regarded their success as joint endeavors, often calling to personally thank those involved. Many, many Family Voices friends and advocates worked over so many years for passage of the FOA. Some of us, his constituents as well as others, received calls from him when it passed!"

For his dedication to and tireless efforts on behalf of children and youth with special health care needs, Senator Kennedy was presented with "The Senator John Chafee Legislative Friend of Children and Youth with Special Health Care Needs Award" at the Family Voices National Conference in 2001, which he accepted in person. "Senator Kennedy spoke movingly of his first-hand understanding of the issues families face when his own young son lost a leg to cancer and of how this experience invigorated his commitment to improving health care for all children and families," recalled Nora Wells.

Perhaps Dan Wells (VT) said it best when he said, "Senator Kennedy wouldn't have wanted some Federal office building for his memorial, and would find no use for a statue or monument. There would be no better memorial than a law entitled ‘The Edward M. Kennedy Memorial Health Reform Act' that encompasses the principles he always stood for."

We offer our deepest sympathies to the Kennedy Family. We pledge, attempting the passion, clarity of purpose, and fierce determination exhibited by Sen. Kennedy, to honor his legacy by continuing our work to keep families at the center of children's health care, and to fight for quality health care that is affordable and accessible to the most vulnerable in our midst.

Note: Family Voices and other advocates for children with special health care needs and disabilities mourn the passing of Senator Kennedy's sister, Eunice Kennedy Shriver, just two weeks before his death. Our condolences go out to the extended Kennedy family-as well as our appreciation for their work.


From Our National Partners

Champions for Inclusive Communities
Champions for Inclusive Communities

Champions for Inclusive Communities is identifying communities that are working hard on organizing services for CYSHCN and their families, e.g., encouraging family leadership, medical homes, transition, etc. Are there some communities in your area that deserve a pat on the back, perhaps some that are implementing the terrific strategies in partnership with Family-to-Family Health Information Centers or Integrated Services grants? If so, please send the name of the community and contact information for a community representative to: Dian Behl. She'll take care of gathering information. In case you haven't seen their "Star Communities", go to the Champions website.

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September is:
Childhood Cancer Awareness Month
Sickle Cell Anemia Awareness Month.
Visit to learn more.

"When I thought of all the years, all the battles, and all the memories of my long public life, I felt confident in these closing days that while I will not be there when it happens, you will be the President who at long last signs into law the health care reform that is the great unfinished business of our society. For me, this cause stretched across decades; it has been disappointed, but never finally defeated. It was the cause of my life. And in the past year, the prospect of victory sustained me-and the work of achieving it summoned my energy and determination. "

-- Senator Ted Kennedy

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