July 2010

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From the President

Family Involvement

By Phyllis J. Sloyer, RN, PhD, FAHM, FAAP 

Do you recall having families teach you as a student what it meant to have a parent-professional partnership? If you are not of the millennia generation, chances are this was a relatively foreign concept. In fact, it was much more common to talk around families about families. [read more]

From the CEO

Family Involvement in MCH Programs 

By Michael R. Fraser, PhD CAE, AMCHP’s Chief Executive Officer and Sophie Arao-Nguyen, PhD, Executive Director of Family Voices

This month our From the CEO column is an interview between AMCHP CEO Mike Fraser and Dr. Sophie Arao-Nguyen, Executive Director of Family Voices. [read more]

Features

In Memory of Ryan Colburn and Polly Arango

By Ruth Walden
Family Specialist, New York Department of Health, Children with Special Health Care Needs Unit, Chair of the AMCHP Family & Youth Leadership Committee and President, Family Voices Board of Directors 

Tragedy struck twice in June claiming two very vocal advocates for children and youth with special health care needs (CYSHCN):  Ryan S. Colburn and Polly Arango. [read more]

Wyoming Parent Leadership Training Institute (PLTI)

By Charla Ricciardi
Interim CSHCN Director
PLTI State Coordinator and Facilitator
Wyoming Department of Health

Anne Siebert
PLTI State Coordinator and Facilitator  

Susan, a Wyoming Parent Leadership Training Institute (PLTI) participant, smiles and revels in the applause from fellow parent leaders as she completes her final speech for the Laramie County PLTI. Susan has just detailed her work to establish an autism support and educational nonprofit in the Cheyenne, WY area. Susan’s required community project as a parent leader focused on autism, because as a grandmother raising a grandson with autism, she realized the unfulfilled need. Through the PLTI retreat, 20-week curriculum and community project, she gained the tools necessary to emerge as a more effective and civic leader. Susan is one of 16 graduates of the PLTI of Laramie County pilot project who committed to over 70 hours of training and countless additional hours preparing for class, working on projects and telling others about their exponential growth because of PLTI. [read more]

Translating Family Centeredness to Health Equity in MCH Education

By Lois McCloskey, DrPH
Associate Professor
Director, Maternal and Child Health Concentration
Department of Community Health Sciences
Boston University School of Public Health

Deborah Allen, ScD
Director, Child, Adolescent and Family Health
Boston Public Health Commission

For decades, MCH training lagged behind practice in relation to family-centered care (FCC). Few MCH students left training understanding FCC as a theoretical construct or an approach to practice. The field paid a price; MCH graduates had to play catch-up to engage in effective MCH practice. When new grant guidance called on MCH training programs to close this gap between training and practice in 2004, the MCH Department at the Boston University School of Public Health designed a family-centered training initiative drawing on the experience of MCH practitioners. Initiative goals were to assure that MCH programs address needs and reflect preferences and aspirations of families and that MCH leaders share commitment to and understanding of family-centered care.
[read more]

Success Stories

Delaware’s New Hands and Voices Chapter 

By Alisa Maria Olshefsky, MPH
Chief, Family Health and Systems Management
Delaware Division of Public Health 

The Delaware Title V program has revamped its approach to partnering with families on all aspects of MCH and CYSHCN services and systems. This required assessing how families were involved and whether they felt empowered to make a meaningful contribution to program vision, mission and operations. By reframing the approach to be more strengths-based, the interactions between public health staff and families were focused on what each brought to the table and how to build on those unique assets. This approach has yielded great results with the new Delaware Hands and Voices Chapter, led by Mrs. Julie Johnson. Hands and Voices is a national nonprofit dedicated to supporting families of children who are deaf or hard of hearing. Mrs. Johnson is the parent of an energetic 15-year-old son who is also deaf. Through her work in early childhood, Mrs. Johnson has been a long-time advocate for children, including services for those with special needs. [read more]

The Family Discipline in LENDs 

By Fran D. Goldfarb, MA, CHES

Director, Family Support, USC UCEDD CHLA, Chair, AUCD LEND Family Discipline Workgroup 

Leadership Education in Neurodevelopmental and related Disabilities (LEND) is an interdisciplinary training program funded by MCHB. As early as 1995, family members have had a role in preparing future health and allied health professionals to work with children with disabilities and their families, and their involvement continues to grow. In preparation for being honored as the 2005 LEND Discipline of the Year, LENDs were surveyed to identify the various ways that families participated as faculty and trainees. Responses indicated family involvement varied at different programs, with families participating in LEND as steering committee members, guest lecturers, student mentors, and full-time paid faculty. [read more]

 

Oregon Engages Youth with Disabilities in Preconception Health

By Emilee Coulter-Thompson, MSW
Women’s Health Educator
Oregon Public Health Division 

Julie McFarlane, MPH
Women’s Health Program Manager
Oregon Public Health Division 

Oregon is one of six states participating in AMCHP’s Action Learning Collaborative (ALC) on preconception health for adolescents. The Oregon Team focus is on developing recommendations for preconception health for young adults with disabilities. Current research and literature on this topic is sparse and youth with disabilities are often overlooked by other clinical and public health initiatives or assessments. Oregon Team members include representatives from the disability community, youth leaders and public health professionals. [read more]

Texas’ Leadership Education Adolescent Health (LEAH) 

By Valerie F. Bowman, LMSW
Project Coordinator, BCM/TCH LEAH Transition Project 

Albert C. Hergenroeder, MD
LEAH Program Director, Professor of Pediatrics, Chief, Division of Adolescent Medicine and Sports Medicine, BCM and Project Director, BCM/TCH LEAH Transition Project 

In 2009, Baylor College of Medicine’s (BCM) MCHB-supported Leadership Education in Adolescent Health (LEAH) Training Program received a two-year grant from the Texas Department of State Health Services to assist in improving health care transitioning for Children and Youth with Special Health Care Needs (CYSHCN) at Texas Children’s Hospital (TCH). [read more]

 

Wisconsin’s Community of Practice on Autism Spectrum Disorders and other Developmental Disabilities 

Contributed by the Wisconsin Department of Health Services staff

The Wisconsin Medical Home Autism Spectrum Disorder (ASD) Connections Initiative (Connections) is a State Implementation Grant for Improving Services for Children and Youth with ASD and other Developmental Disabilities (ASD/DD) and is located in the Children and Youth with Special Health Care Needs (CYSHCN) program of the Wisconsin Department of Health Services (DHS). Connections uses contracts with key partners, including the University of Wisconsin-Madison Waisman Center and the Regional Centers for CYSHCN, to strengthen the state’s infrastructure and support for families with CYSHCN. The CoP represents an innovative strategy in bringing together diverse partners. [read more]

 

 

 

Real Life Story

A Journey to Family Leadership

By Ruth Walden
Family Specialist, New York Department of Health, Children with Special Health Care Needs Unit, Chair of the AMCHP Family & Youth Leadership Committee and President, Family Voices Board of Directors

As I pondered joining the ranks of family leaders, I recall the support of many. I was only working for my Title V program for three short months before I was asked to attend my first AMCHP meeting. I was terrified that I wouldn’t know or understand anything at the meeting. However, people attending were more than willing to share and teach. I met many family leaders and felt welcomed to the AMCHP family. This was a time before the Family Scholar Program was part of the fabric and even before family meetings were instituted. These were the days before the emphasis was on family involvement and the development of family leadership. [read more]

Member to Member

Member states were asked to answer the following question: 

The Patient Protection and Affordable Care Act includes provisions that will benefit children and youth with special health care needs (CYSHCN) and their families, including expanded access to health insurance coverage and new investments in medical home models.  As these and other provisions are implemented, what new and/or ongoing roles do you see for Title V programs in building systems of care for children and youth with special health care needs and their families?  [read more]

View from Washington

Family Involvement

By Brent Ewig, MHS
Director of Public Policy & Government Affairs, AMCHP    

Amidst all the special interests in our nation’s capital, keeping families at the center of policymaking is not easy. Here at AMCHP we’ve worked hard to institutionalize family involvement and family leadership in all aspects of our operations – including and especially in our advocacy work. While we have much room for improvement, I want to share some of the steps we’ve taken and progress we have made in recent years. [read more]
 

Who's New

AMCHP Board of Directors Update

AMCHP’s board of directors is pleased to welcome Gloria Rodriguez, PhD, as our new Region II Director. We are also pleased to share that Melinda Sanders, MS RN, Section Administrator, Section for Healthy Families and Youth, Missouri Department of Health and Senior Services has been elected to the position of AMCHP’s Treasurer. [read more]


AMCHP Welcomes Member Services Intern Maeve Spence

As AMCHP’s new member services intern, Maeve will assist our member services manager with dues renewals and member retention programs. [read more]

New MCH Leaders

See who are the new MCH leaders! [read more] 


Get Involved

AMCHP/Family Voices Call for Presentations
The 2011 Annual Conference of the Association of Maternal & Child Health Programs (AMCHP) will take place February 12-15, 2011, at the Omni Shoreham Hotel in Washington, DC. The conference will be co-located with the Family Voices National Conference (February 13-15, 2011), with the shared theme of Working Together to Improve Maternal and Child Health: The 2011 AMCHP and Family Voices National Conferences. The AMCHP and Family Voices co-located conferences are the ideal venues to present your ideas, research, innovative programming, best practices and effective outreach strategies to MCH and other public health practitioners, family leaders, researchers, federal officials, advocates, healthcare providers and directors of state programs. [read more]

AMCHP to Host a Webinar on Best Practices
The webinar, “Best Practices 101: AMCHP’s Approach to Collecting, Highlighting and Disseminating Effective Programs in Maternal and Child Health,” will occur on Wednesday, August 4 from 3 to 4:30 p.m. EST. The purpose of this webinar is to provide an overview of AMCHP’s Best Practices program including how the organization defines the term “best practice,” the criteria that are used to categorize emerging, promising and best practices, and the submission and review process. The presenter will also discuss the Innovation Station, AMCHP’s online database of effective programs. [read more]

16th Annual MCH EPI Conference Call for Abstracts
This call for abstracts is exclusively for first year/new fellows, interns, trainees, and CDC Epidemic Intelligent Service (EIS) officers interested in submitting abstracts for oral or poster presentation. Each submission requires proof of fellow/intern/trainee/CDC EIS officer status from a current mentor or supervisor for consideration. Conference organizers strongly recommend that all interested parties submit by July 30. [read more]


Data and Trends

View the Data and Trends for this month's issue on family involvement and CYSHCN  here.

 

Resources

View and download resources on family involvement and CYSHCN . [read more]

  

Board of Directors

Meet AMCHP's Board of Directors

 

AMCHP Staff

Meet AMCHP's staff.

Calendar

Special Events

MCHB 75th Anniversary of Title V Commemoration
October 20
Washington, DC 

Looking to the Future: What are the Opportunities and Challenges of Health Reform for Improving Maternal and Child Health?
October 21
Washington, DC  

AMCHP 2011 Annual Conference
February 12-15, 2011
Washington, DC

 

More MCH Events 

Fourth Annual National Conference on Health Communication, Marketing, and Media
August 17-19
Atlanta, GA  

CityMatCH Urban MCH Leadership Conference
September 11–14
Chicago, IL 

AHRQ’s 2010 Annual Conference
September 27-29
Bethesda, MD 

16th Annual MCH EPI Pre-Conference Data Skill Trainings
December 13-14
San Antonio, TX

16th Annual CDC MCH EPI Conference
December 15-17
San Antonio, TX