July 2011

July 07, 2011

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Feature Story: Medicaid is in Peril!

Family Leadership in the States:

News from Family Voices:

From Our Partners:

News You Can Use:

Medicaid is in Peril! 

doctor examing a child's eyesAt this time, the focus of activity in Washington, DC, is the negotiations over the “debt ceiling”—or, more specifically, what deficit reduction measures will be taken in exchange for votes to increase the nation’s debt ceiling (essentially like a credit limit). The nation will reach its debt ceiling by August 2 unless Congress votes to increase it. But many Members of Congress say they will not vote to increase the debt ceiling unless significant cuts are made in federal spending. Since failure to increase the debt ceiling would likely harm the economy, these Members of Congress have a lot of bargaining power.

Negotiations between Congress and the administration are underway to reach an agreement on how to reduce the budget deficit, which can be achieved by cutting spending, increasing revenues (by closing tax loopholes or raising taxes), or a combination of the two. There is no doubt that there will be spending cuts, and Medicaid will likely be part of the deal. In fact, many experts cannot envision a solution to these negotiations that doesn’t negatively impact Medicaid and therefore its recipients.

Why Medicaid? Congress and the Administration have chosen to seek savings largely through cuts in the “entitlement” programs since those constitute such a large share of the federal budget. Politically, it is very difficult to make cuts in either Social Security or Medicare, two significant entitlement programs, due to the power of the lobbying groups that support them. The same is not true for Medicaid.
What are the threats?  There are several proposals that would severely weaken Medicaid:
 Block grants. Medicaid could be changed from an entitlement to a “block grant,” under which a fixed amount of money would be given to each state and states would have more flexibility to determine who is eligible for the program and what services are covered.
Caps on spending or debt. Medicaid could also be cut if there is a cap on overall federal spending, health care spending, or on the total amount of debt. A cap could lead to the same results as a block grant unless Medicaid is exempted from cuts that would be taken if spending/debt exceeds the cap.

Repeal of the maintenance-of-effort (MOE) provision. The health care reform law contains a provision that prohibits states from changing Medicaid or CHIP eligibility rules or procedures for children until 2019 and for adults until 2014. Many governors are pushing for repeal of the MOE so they can cut beneficiaries and/or services to save money now.

Recently, 41 Senators signed a letter to the Administration indicating that they would oppose significant cuts to Medicaid. While this letter sends a strong message of support for the program to those currently conducting the negotiations, it alone won’t be enough to protect it.
Recipients of Medicaid’s benefits, and those who love and support them, must also make their voices heard


Family Leadership in the States

Family Leadership in the States

Clarifying the Medicaid Maze in Massachusetts

Beth DworetzkyF2Fs track data about the assistance and the information they provide. For the Massachusetts F2F HIC, Mass Family Voices at the Federation for Children with Special Needs, this data revealed a disturbing trend which they analyzed and worked to address together with a state agency  to improve services for families of children needing behavioral health services. 

When reviewing families’ requests for assistance, Beth Dworetzky, Director, and Bonnie Thompson, Information Specialist, noticed a significant number of calls from families with children needing behavioral health services, who had been previously covered by Medicaid. They discovered these children had received Medicaid coverage as a result of voluntarily enrolling with the MA Department of Children and Families (DCF) to help keep children with serious emotional disturbance (SED) safely at home.  However, once DCF closed the case, the Medicaid benefit ended. Families were not notified that they had to first apply for Medicaid in order for their children to remain eligible for behavioral health services.

Beth reported this issue to the Director of the Children’s Behavioral Health Initiative (CHBI) and together they took steps to resolve this issue:
New Regulations were created by CHBI to improve transition out of DCF
Family-friendly materials on Medicaid eligibility and application were developed by Mass FV and CHBI
Workshops were provided by Mass FV for behavioral health providers on helping  families’ with Medicaid applications

So how do you measure the success of such collaboration? Beth laughed, “We stopped getting phone calls about the problem! “ To date, Beth has presented 8 workshops to 142 behavioral health providers across the state.  Feedback has been very positive.  As one attendee noted, “This presentation helped clarify the Medicaid maze—WOW!”   Evaluation results show that 95%  of workshop attendees felt more knowledgeable about Medicaid.

Learn more about Mass FV at www.massfamilyvoices.org.


Congratulations to Gina Pola-Money, Utah Family Voices Director!
Gina recently received the Advocacy and Civic Leader Award from the Molina Healthcare Community Awards for developing and building Utah Family Voices over the last 18 years, and for the volunteer work that her family does with families who have children who are medically fragile and/or homebound. Gina said, “It was quite an honor and also a tribute to the reason I do it—my kids!”

Whats New with Family Voices



New Faces at Family Voices !
Family Voices is pleased to announce that three highly qualified and enthusiastic staff members have joined the FV family:

Wendy Byrnes, Director of Strategic Initiatives: Wendy and her position are new, reflecting a shift of responsibilities from the Deputy Director position. Hailing from California, Wendy brings 17 years’ knowledge and expertise as a parent, advocate, and administrator working in the disability and civil rights arena. She will be working closely with the Executive Director, Resource Development Committee, Membership Committee, and other FV staff on fundraising and membership initiatives.

Leslie Carroll, IMPACT Project Director: Leslie brings her expertise in a broad range of professional interests, including the interface between health and the built and natural environments; transportation planning; chronic disease prevention; improving health outcomes for diverse populations, children, families, and older adults; neighborhood and community economic development; partnership development; and community engagement. She works from Ashland, Oregon.

Jennifer Thomas, KASA Director: Jennifer is no stranger to KASA (Kids As Self-Advocates), having worked as a KASA Board member from 2003-2008, and a consultant since then. In addition to disability advocacy and youth leadership development experience, Jennifer has taught elementary school and participated in a number of Alabama state leadership forums. She will be working from her home in Montgomery, Alabama.
Welcome Wendy, Leslie, and Jennifer! .

NCFPP websiteNew Website: National Center for Family/Professional Partnership
A new website was recently launched by the NCFPP, complementing the FV website and providing a wealth of information for families, F2F HICs, SAOs, partners, and others.  An easy-to-use Tools & Resources section compiles materials by topic shared by Family Voices, F2F HICs, and partners.   Other sections include information on CYSHCN, Quality Health Care, our work with partners, and individual pages for each F2F showcasing their work.  Check it out at:  www.fv-ncfpp.org.



Medicaid Matters Campaign:
As a trusted national expert on family-centered care, Family Voices has once again been selected as one of the few organizations in the country to visit the White House on July 7th, 2011.  The invitation is part of an education campaign highlighting the ongoing need for Medicaid for children with special health care needs.

Family Voices is asking families to share their personal stories to help policymakers to understand the quality of life issues that are at stake if Medicaid is reduced or eliminated.
We would like to hear your story that Medicaid Matters and make sure that policy makers hear it too. Visit the Family Voices website (http://www.familyvoices.org/action/share) to share stories, pictures and even video as a means to help illuminate the challenges faced by families.  Questions?  Contact Wendy Byrnes at wbyrnes@familyvoices.org.

New Project with CDC
Prevention and Treatment of Influenza in High-Risk Persons: The Centers for Disease Control (CDC) wants to learn more about family attitudes towards vaccination and influenza and has engaged Family Voices in this effort.  A survey will soon be disseminated by F2Fs and SAOs across the country to solicit the knowledge and opinions of caregivers of CYSHCN in high-risk categories towards flu vaccinations.   Focus groups will also be held with families in California, Massachusetts, and Texas.  This project is a unique partnership among policy-makers, Family Voices, and family leaders to share the voice of families with policy-makers.


Words of Wisdom from Betsy Anderson
Peter C. van Dyck, M.D., M.P.H. (Associate Administrator, MCHB), Betsy Anderson (Family Voices), Bernie Guyer, (MA MCH Director and MCH Program Director—Johns Hopkins, retired)Betsy, recently retired from Family Voices, provided a historical look at family leadership in her acceptance speech for  the Founder’s Service Award at the recent Genetic Alliance 25th Anniversary Celebration.  From her personal experiences as a young mother of an adopted child with Spina Bifida, Betsy recounted the difficulty of connecting with other families to work together to improve policies and programs. “It was so hard before the Internet and e-mail to even locate each other and there were typically so few of us in any town or state - for any given condition - our voices seemed so small. Diagnostic labels – great for actual treatment were much less useful for the policy and program areas we were beginning to address.“  Families needed to share information on understanding genetic risk, financing of genetic services and care, locating researchers interested in children’s conditions, and much more, regardless of diagnosis.



Families came together, organized and shared stories in a cross-disability organization, the Genetic Alliance, which, like Family Voices, strengthens “individual voices while creating opportunities for families to work on common issues.“  By working and supporting one another, families became engaged, powerful consumers contributing questions, knowledge, and concerns to improve systems of care, or, in Betsy’s words,  “making the field of human genetics – human.”

We hope you will keep Betsy’s perspective in mind as we work together for all CYSHCN.




From Our National Partners


National Center for Hearing Assessment and Management (NCHAM): Early Hearing Detection and Intervention (EHDI)
Mark your calendars for this collaborative trio of conferences, October 26-28, 2011, Raleigh, NC:

  • The Fifth Biennial Pediatric Audiology Symposium
  • The Sixth Annual Investing in Family Support Conference
  • The Fourth Southeastern Regional EHDI Conference 


AMCHP: Innovation Station
Do you have a successful program that has improved child health outcomes in areas such as injury and violence prevention, school readiness, mental health, oral health, and more?

Share your program in Innovation Station, AMCHP’s searchable database of emerging, promising, and best practices in maternal and child health. Online applications are accepted on a rolling basis. Fo


AAP: Parent Involvement Resolution 
Family Voices has long partnered with the AAP on various projects, providing the “family voice” as well as demonstrating the need for and value of including such a voice in their projects. Recently, an official resolution was passed with 279 votes (94%). Resolved: That the Academy develop and implement a strategy to expand the opportunity for parent input and participation in AAP activities and programs.

Noting the potential for family engagement in Medical Home, communities and hospitals, Chapters and Districts, and at the National AAP level, six mutual benefits of family engagement were recognized:

  1. Improved outcomes of care for children
  2. Improved access to care
  3. Improved quality/safety of care
  4. Realization of the medical home
  5. Cultural effectiveness
  6. Stronger voice for children/family issues

Family Voices and the F2F HICs were both mentioned as organizations involved in AAP activities.

News  You Can Use

News You Can Use

HHS New Draft Standards to Improve Data Collection and Reduce Health Disparities—Comments Needed!
U.S. Department of Health and Human Services (HHS) is seeking public comments on its draft standards to improve the monitoring of health data by race, ethnicity, sex, primary language, and disability status. Read the HHS Press Release at: www.hhs.gov/news/press/2011pres/06/20110629a.html. Public comments can be made at www.regulations.gov under docket number HHS-OMH-2011-0013, and will be accepted until August 1.

MCH Library’s New Child Health Resources for Families and Professionals: Reaching Out After Disasters 

Healthy People 2020 Community Innovation Awards:
Prevention and Health Promotion (ODPHP) has released a Request for Proposals for the Healthy People 2020 Community Innovations Project. ODPHP will be awarding 85-170 awards of $5000 to $10,000 to community-based organizations addressing one or more of the HP2020 topic areas, with special emphasis on Environmental Justice, Health Equity, or Healthy Behaviors Across All Life Stages. Proposals are due on August 5, 2011.

Resources from the Agency for Healthcare Research and Quality (AHRQ)

  • Quality of Health Care—2010 State Snapshots by type of condition, level of care, treatment setting, race, income, and insurance status, available at:
  • New Cultural and Linguistic Competence Resource, featuring innovative programs and quality tools
  • Conoce las Pregunas (Know the Questions), AHRQ’s multimedia Spanish-language campaign to encourage Hispanics to become more involved in their health care

Preventing Errors in Child’s Health Care
A series of short videos in English and Spanish designed to help prevent errors in children’s health care, including the basics, going to the hospital, having an operation, lab and medical tests, and taking medicines safely


 July is UV Safety Month
July is UV Safety Month


Thank you for your interest in Friday's Child.  To subscribe to the e-newsletter version, please visit http://www.familyvoices.org/action/keep_informed. Should you have any questions about this newsletter, please email Peggy Curran