October 2010

October 15, 2010

Celebrating Title V: No Better Way than to Stand Side by Side !

Happy 75th Anniversary, Title VAs Family Voices is proud to be celebrating this landmark occasion-as we have championed the value of family/professional partnerships in program and policy since the inception of Family Voices in 1992.

Title V's original purpose was "to improve the health of all mothers and children, including children with special health care needs." Families were involved from the beginning, but their role in Title V programs received a stronger focus in the 1980s. By the 1990s, states began reporting the involvement of families in CSHCN programs and policies in the states' Title V Block Grants. And Family Voices was right there.

For more than a decade, family members have reviewed states' Title V Block Grants. Workshops trained parents to be Block Grant reviewers and to date, family members have participated in reviews of block grants of all states and territories-more than once for many states. Each year MCHB selects approximately ten parent reviewers-some experienced, some first-timers-from diverse backgrounds. This year, for the first time, a young adult was a reviewer.

Another measure of CSHCN family involvement comes from "Form 13" in the Block Grant application. In 2010, 43 of 59 states and territories scored in the upper third on this measure.

Similar reporting is not required of MCH family involvement. According to Betsy Anderson, Family Voices IMPACT Director, "There is not as much family involvement in MCH as there is in CSHCN. We need to find a champion for this cause!"

Friday's Child frequently features parent/professional partnerships accomplishing wonderful projects. New Jersey's Gloria Rodriguez, Director of Special Child Health and Early Intervention Services, NJ Department of Health talking about working with SPAN:

Our collaboration-partnership is possible and effective because we have trust in each other, equality and a balance of power, a shared vision and commitment to the same goals; we highly value the contributions made by each agency; and we see the benefits to our respective agencies, but most importantly to the families and children we serve.

Successful partnering depends on recognizing strengths and unique perspectives. Claudia Fernandez, Director, MCH-Public Health Leadership Institute "believes leadership is about creating the kind of culture in which everyone feels welcome and can contribute the gifts they bring. There is no better way to achieve that goal than to stand side-by-side-parent leaders and program leaders-as we create, deliver, and learn together."



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Family Leadership in the States

Family Leadership in the States:

Epilepsy and Seizure Disorder Guide from Family TIES of Nevada: Moving the Mission Forward
Epilepsy and Seizure Disorder Guide from Family TIES of NevadaFor Family TIES of Nevada, a recent break from generically supporting disability issues and chronic health conditions to a condition-specific project has opened doors to reach underserved rural populations. Marcia O'Malley, Family Voices Board member and now former Family TIES Executive Director, described this new Epilepsy and Seizure Disorder Guide project as a "total win-win."

The idea started a few years ago at the University of Southern California University Center for Excellence in Developmental Disabilities. Cary Kreutzer, Project Director, wanted to take their California urban-based epilepsy guide to a new level. Through subsequent involvement with Family Voices, she saw the value of a regional resource geared for the rural setting, and brought in Nevada, Wyoming, and Alaska as part of "Project Access."

Building on generic epilepsy/seizure disorder information, Family TIES staff added state-specific information about resources and family support vehicles. Marcia said, "We focused on improving information, training, and services for children with epilepsy in the rural and frontier areas of our state, looking for new ways to do outreach, and identifying best practices."

A state-wide team consisting of Title V representatives, agency staff serving the rural population, and parents of children with epilepsy reviewed the guide and provided valuable feedback.

According to Marcia, "the project has given us new tools, and we've connected with rural families who are now receiving information regularly and sharing it with the community. This project had a far-reaching impact on all of us," Marcia added. "It's not just a community resource. It is an effective way to move our mission forward of supporting all children with special needs."

Copies of the guide may be obtained through the Family TIES website.


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Legislative Corner

Legislative Corner

Washington Update
The health care reform law, known as the Affordable Care Act (ACA), provides a number of benefits of special interest to CYSHCN and their families. Some of the most important ones went into effect on September 23, 2010. For insurance plan/policy years beginning on or after that date, most insurers will no longer be able to -

  • deny coverage to children under age 19 who have pre-existing conditions,
  • impose lifetime limits on coverage,
  • impose annual dollar limits exceeding specified amounts for "essential benefits," or
  • rescind policies in the absence of fraud or intentional misrepresentation.

In addition, the law provides protections concerning -

  • appeals of insurance companies' decisions, and
  • payment for out-of-network emergency room care.

Another provision that went in to effective in September includes the availability of parental insurance coverage for adult children up to age 26.

It should be cautioned that there are some limitations to these protections. For example, some insurance plans - e.g., those sold on the individual market that were in effect when the law was enacted (March 23, 2010) - are not subject to the consumer protections, and the annual limit restrictions may still be too low for children who need very expensive care (although all annual limits are prohibited as of 2014). In addition, it is not clear whether the dollar-limit prohibitions are applicable to limits on services (e.g., caps on number of visits).

Health Reform Hits Main Street-The Kaiser Family Foundation Video
This animated short video, featuring the YouToons, examines health reform law. The movie's three sections explain the problems with the current system, and then describe the short term changes that will take place between now and 2014, and the major provisions that take effect in 2014. But the benefits of the law are nonetheless substantial. In addition to those effective in September, there are a number of provisions that will take effect in 2014, including a significant increase in Medicaid eligibility. All individuals will be eligible for Medicaid if their family incomes are less than 133% of the Federal Poverty Level.

In 2014, there will also be subsidies available for uninsured people below certain income levels so that they can purchase insurance through state "Exchanges" (controlled marketplaces). Any plan sold in an Exchange must provide a broad range of preventive benefits for children, as well as "essential benefits" that include services important to CYSHCN (e.g., rehabilitation/ habilitation services and mental health services).

More information about the ACA, and information about public and private health insurance options in every state, can be found at http://www.healthcare.gov.

If you have questions, please contact the Public Policy Team -- Brooke Lehmann and Janis Guerney.

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News from Family Voices

REGISTRATION NOW OPEN: Family Voices National Conference & Gala !
Register for the Family Voices Conference and Gala Join us in Washington for the 2011 Family Voices National Conference, held in conjunction with the 2011 Annual Conference of the Association of Maternal & Child Health Programs (AMCHP). Both conferences will focus on the theme Working Together to Improve Maternal and Child Health.

The Family Voices National Conference will provide opportunities for learning and networking with the Family Voices network of family leaders and AMCHP's network of state Title V and MCH leaders and partners from across the country. In addition to Family Voices-only events, shared events with AMCHP will include a plenary session featuring Andy Goodman, nationally recognized expert in public interest communications, and many exciting shared workshop sessions.

Focusing on current critical topics such as health care reform, family-centered care, quality, and health and wellness, we'll learn about new ideas, research, innovative programming, best practices, and effective outreach strategies from family and youth leaders, public health practitioners, researchers, federal officials, advocates, health care providers, and directors of state programs.

You are also invited to join Family Voices and AMCHP in a shared celebration honoring Polly Arango, founding Executive Director of Family Voices, and others who have dedicated their lives to families and children at the Gala dinner on Monday, February 14, 2011. This fundraising event will benefit both Family Voices and AMCHP.

Questions? Contact Adelita Martinez - 1-888-835-5669.


SAO Update
In May 2009, National Family Voices launched our new organizational structure with three levels of membership-- State Affiliate Organizations (SAOs), Organizational Membership and Individual Membership.

One statewide, family-led organization in each state and territory may be designated as SAO; family-led tribal organizations may apply for Tribal SAO status. SAOs are permitted to use "Family Voices" in their names to help promote their identity and connection to the national organization, and are the only organizations that may represent Family Voices in the states.  We are pleased to report that, as of this writing, 26 SAOs have been approved in the following states:  ND, NJ, NY, NH, GA, CT, NE, AK, MD, VT, MN, WA, NM, TX, SC, LA, AZ, OK, IL, OH, KS, ID, IN, WI, ME and PA.

We are currently reviewing applications from CA, MT, SD and MA, and we have Letters of Intent from MS, MO, DE, TN, AL, FL, WY and CO. In addition, we have individual and organizational members, adding their voices to the nation's only coalition of families and providers focused on family-centered care for children and youth with special health care needs/disabilities. 

Watch our redesigned website, coming soon, for how you may become a member of Family Voices!

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News You Can Use:
Resources and More
News you can use

Title V and Block Grant Resources

Check MarkGetting to Know Title V
This booklet from Family Voices, AKA "The Blue Book," is the perfect starting place to gain an understanding of Title V and the Block Grant process.

Check MarkFamilies and Title V
This Family Voices web page has a great collection of resources ready for download. In particular, check out First Steps for Family Leaders: Forming Collaborative Relationships with Your State Title V Program and the Title V Information System, which is another goldmine of links to help you find the data you need-and understand it.

Check MarkFamilies in Program and Policy Survey (FiPPs)
These two comprehensive reports of surveys done in 2001/2002 with state MCH and CSHCN Directors provide perspective on the evolution of family professional partnerships as well as useful tips and ideas on family participation.

Check MarkCelebrating the Legacy, Shaping the Future
An overview of the Title V MCH Block Grant from AMCHP; includes information about Title V, AMCHP, and state and territorial MCH programs.

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From Our National Partners
From our national partners


Division of Community-Based Initiatives (DOCBI) Newly Redesigned Website:
This user-friendly redesign features a simplified grants database search process, topic-based resources, and "lessons from the field."

Commonwealth Fund

Systems of Care Coordination for Children: Lessons Learned Across State Models
This report summarizes lessons from programs in five states that refer families to appropriate community or state programs, help coordinate their care, provide support and follow-up to ensure they receive needed services, and provide a feedback loop to primary care providers.

Robert Wood Johnson

Community Health Leaders Program Call for Nominations
Look around you-who do you know who could use $125,000 in recognition of their work to "significantly improve health and healthcare in their community"? Submit your nominations by October 22, 2010.

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October is National Disability Employment Awareness Month

National Disability Employment Awareness Month

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