Resource eBlast

Resource eBlast: an emailed roundup of resources for families of children/youth with special health care needs.

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Below are past editions of the newsletter.


2019 Family Voices Leadership Conference Presentation Slides and Materials

Below are slides and other materials from keynote and breakout session presentations at the 2019 Family Voices Leadership Conference. The conference schedule and presentation descriptions can be found in the conference program. Speaker bios are here.


Starting and Sustaining a Youth Advisory Board Webinar Series

This webinar series is especially for organizations that seek to develop a youth advisory board.

In Part 1, Matthew Shapiro of Kids As Self Advocates (KASA) will provide an overview of the value of having the perspective of youth/young adults with disabilities at decision-making meetings, and discuss elements of youth voice, such as:

  • The importance of building youth as self advocates
  • Where does self advocacy begin?
  • What is youth voice — what does it look and feel like?

In Part 2, attendees will learn the following:

  • What a self advocate looks like
  • What skills are necessary for a youth leader
  • What kind of training and mentoring is most helpful
  • Tips and best practices to grow a strong group of youth leaders

In Part 3, attendees will learn the following:

  • The nuts and bolts of establishing a board
  • Effective ways to keep it going
  • Suggestions to engage aged-out youth

Youth; Working With A Group

This collection of KASA (Kids As Self-Advocates) resources is created for youth, by youth, about working with groups.

Reviewed 2019.

Setting Up and Preparing for Hill Visits 2019 Webinar

Funding for Family-to-Family Health Information Centers (F2Fs) needs to be reauthorized this year, and it’s important to educate Members of Congress about the extraordinary work that F2Fs do to serve families.

On this webinar, Family Voices Policy Director Janis Guerney will go over the specifics of making an appointment with your Congressional offices, talk about preparation and topics to discuss, and answer any questions you have about the process.

How Family Organizations can Help Shape and Implement the Title V Block Grant

How can family organizations maximize their meaningful involvement throughout the Block Grant process, both procedurally and substantively? How can they most effectively shape the components of the Block Grant, especially in this 5-year needs assessment year? Where are the “entry points” into the Block Grant development and implementation process?

This webinar will explore these questions and provide participants with strategies to:

  • Demonstrate their value-add to MCH state agencies
  • Engage a wide variety of family and youth perspectives in the Block Grant process
  • Have the greatest possible influence on the process, “from start to finish to starting again!”

Building Partnerships and Educating Families and Professionals about Supported Decision-Making Webinar

In this webinar from Family Voices and Quality Trust’s National Resource Center for Supported Decision-Making, you’ll hear from three Family-to-Family Health Information Centers on how they are helping to educate families, health care providers, legal professionals, and others about Supported Decision-Making (SDM) as an alternative option to guardianship for transition age youth.

There will also be time for YOU to share strategies and educational materials you have used to help families use supported decision-making.


Elizabeth Hecht, co-director of Family Voices of Wisconsin and Outreach Specialist for Public Policy, Waismann Center, educates families and medical providers about Supported Decision-Making and serves on a Working Interdisciplinary Network of Guardianship Stakeholders (WINGS) and a Wisconsin Community of Practice on SDM.

Janna Murrell, Assistant Executive Director of Raising Special Kids, leads collaborative efforts with Arizona’s Division of Developmental Disabilities to create a training for parents and professionals: “Legal Options, Turning 18? What’s Next.” As the parent of a young man with cerebral palsy, she has benefited from parent to parent support to increase her knowledge of options for individuals transitioning to adult lives.

Carrie Woodcock is the Executive Director, Maine Parent Federation, and Project Director for their Supported Decision-Making program, which helps youth and families explore alternative options to guardianship, as well as options within guardianship.

Morgan Whitlatch, Legal Director for Quality Trust for Individuals with Disabilities and Lead Project Director of the National Resource Center for Supported Decision-Making, will answer questions about their center and promising educational approaches and strategies to advance Supported Decision-Making.


Family/Professional Partnerships

A partnership is a relationship between individuals or groups that is characterized by mutual cooperation and responsibility for the achievement of a specified goal. Partnerships have been used as successful models in many disciplines. In health care, evidence has shown that strong doctor-patient relationships improve patient and family health outcomes. Key to such partnerships are the following principles:

  • Families and professionals work together in the best interest of the child and the family. As the child grows, s/he assumes a partnership role.
  • Everyone respects the skills and expertise brought to the relationship.
  • Trust is acknowledged as fundamental.
  • Communication and information sharing are open and objective.
  • Participants make decisions together.
  • There is a willingness to negotiate.

Collaborating with Non-Traditional Partners to Develop Diverse Family Leaders

Developing and supporting diverse family leaders is critical to ensuring that national, state, and local policies and programs meet family needs and the needs of their children.  Four family organizations will present their work collaborating with non-traditional partners to identify, recruit, train, and support family leaders representing the diversity of their states and communities, including Latinas, Marshallese, and a variety of Native American tribal communities.
Panelists include representatives from Family Voices Indiana, Oklahoma Family Network, South Carolina Family Connection, and Washington PAVE.  The webinar will be facilitated by Mercedes Rosa, Family Engagement and Leadership Develpoment Coach, NCFPP.

A Guided Tour of the National Resource Center for Supported Decision Making Website

Websites are often treasure troves of useful resources and other helpful information that are best explored with a knowledgeable tour guide who can point out these treasures and the best way to use them. Join Quality Trust, Family Voices, and Parent to Parent for this guided tour of the National Resource Center for Supported Decision-Making website. Jonathan Martinis is our tour guide, presenting tools and resources to share with families who are helping their children and youth with special health care needs navigate transition to adulthood. This webinar is Part 1 of a two-part series. Part 2 will feature family leaders who are helping families understand how Supported Decision-Making can help their youth prepare for the future.

  • Source: Family Voices

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Our Vision

With families at the center of health care, all children and youth reach their full potential and health disparities are eliminated.

Our Mission

Family Voices is a national organization and grassroots network of families and friends of children and youth with special health care needs and disabilities that promotes partnership with families—including those of cultural, linguistic and geographic diversity—in order to improve health care services and policies for children.

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