Success Stories


State Successes around Family Involvement   

By Lauren Raskin Ramos
Director of Programs, AMCHP 

State Title V programs have been working over many years to develop and strengthen the roles of families in a variety of ways — from planning, implementing and evaluating programs, providing assistance to other families — to developing policies with family input. The following state snapshots are extracted from an upcoming AMCHP issue brief highlighting family involvement. The issue brief will highlight the family involvement and leadership activities of six states: Colorado, Missouri, New Hampshire, New York, Oregon and Washington State.  


Colorado (CO) currently employs one person full-time as family staff at the state level, and 14 family staff (some full and some part-time) at the local level. The following are the key family involvement and leadership activities in CO:  

·         Training Funds: Each local office where family staff is located has a budget line item for family activities to help family staff attend regional and national conferences and trainings.

·         Family Leadership Registry: The CSHCN program is in the process of developing a family leadership registry, which would serve as centralized database of emerging and veteran family leaders, including information on the parent’s role as a parent of CSHCN and also information related to areas of experience and skill sets such as legal, business and marketing.

·         Parent Leadership Training Institute (PLTI): CO has recently contracted with the state of Connecticut to provide a Parent Leadership Training Institute, an evidence-based curriculum that has been implemented in Connecticut for almost 20 years. This train-the-trainer model will help families acquire a core set of competencies in civic involvement to equip them better for policy leadership.  


Missouri’s (MO) CSHCN program funds the Family Partnership Program that employs five parents (a state coordinator and four regional partners) on a part-time basis. Missouri involves parents on a variety of committees including the state Title V MCH Block Grant application review and proposed use of funds as well as the statewide Oral Health Task Force, the Genetics Advisory Committee and subcommittees, and the Early Childhood Comprehensive Systems Grant Advisory Council. Families are also given the opportunity to provide feedback related to CSHCN program publications and other materials. Parents receive transportation stipends to serve on the committees. One of the key family involvement activities in MO is an Annual Retreat for Families. This retreat supports approximately 60 families, and over 100 participants gather on a weekend to network with each other and discuss issues related to caring for their CSHCN. 

New Hampshire

The New Hampshire (NH) CSHCN program contracts with Family Voices of New Hampshire to fund three full-time employees as parent consultants to the Title V Program. Family Voices receives in-kind state office space in the same building where the CSHCN program is located. The MCH program maintains a part-time contract with a parent advocate for its Early Hearing Detection and Intervention Program. The following are the key family involvement and leadership activities in NH: 

·         Block Grant: Title V conducted a survey to gather input on Block Grant Priorities and Family Voices participated in distribution of the electronic survey, 400 individuals responded.

·         Rule Making: The Title V Program always seeks input from the Family Voices Parent Consultants when making any kind of Administrative Rule or policy change. The Parent consultants also participate in MCH, Medicaid and Child Protective Services rule changes discussions.

·         Newborn Screening Panel: Parents participate on the state Newborn Screening Panel. Because of the passionate presence of families of children with cystic fibrosis (CF) on the Newborn Screening Panel, the Screening Panel agreed to an expanded panel of screening conditions, which included CF.  

New York
New York State’s (NY) CHSCN program employs one family staff on a part-time basis as a paid state employee and the CSHCN program has built a network of families starting throughout the state through its Family Champions program. In addition, the Part C program employs a parent on a contract basis. The following are the key family involvement activities in NY:

·         Family Champions Program: This program, which originally started as an advisory committee on access to care, has evolved into a more local program that has developed a solid regional infrastructure of parents. Fifty-five families applied for 20 spots together representing a wide mix of ethnicities, disabilities and localities. In many cases, the local Family Champion has become the parent leader for the area.

·         Child Development Learning Collaborative: This project, funded through the Vermont Child Health Improvement Program, the Commonwealth Fund, and the National Initiative for Children’s Healthcare Quality, focused on improving child development surveillance and screening within the medical home. Five upstate New York practices participated in a quality improvement effort. This represented the first time that the practices had involved parents in a quality improvement effort.

·         Youth Advisory Committee: NY’s Youth Advisory Committee consists of 15 to 25 youth members and works on a variety of issues including a portable health care summary, an insurance fact sheet, and needs assessment.

·         Block Grant Review and Reporting: NY conducts extensive outreach to families during their Block Grant review process. The state provides training to families on how to understand the block grant review process and also conducts surveys. In the actual block grant reviews, only parents, not family staff, provides responses, which are shared with the MCH Advisory Council. In addition, parents testify about the block grant to the MCH Advisory Council.

Oregon (OR) currently has three staff positions (all part-time) at the state level through the Oregon Center for Children and Youth With Special Health Needs (OCCYSHN) program. These families are currently funded at levels that allow the family employees to receive benefits. The CSHCN program also employs 11 families at the community level. Among the key family involvement and leadership activities in OR are supporting a Community Connections Network where Family Liaisons provide input on family centered care and parent perspectives, identify local resources for families, and support families that meet with the team for assistance with the care of their child or youth; Including Family Liaisons on quality improvement teams in local practice sites as part of a clinical quality improvement team; and supporting a Youth Advisory Group.

Washington State

Washington State (WA) supports a Family Involvement Coordinator position. The following are the key family involvement activities in WA: 

·         Block Grant Review: The Family Involvement Coordinator provides an annual training for parents of CSHCN on Title V and CSHCN Program statewide activities prior to having them review the 2008 MCH Block Grant Report and 2009 application. The training also represents an opportunity to provide feedback to state leaders on pressing issues.

·         Prenatal/Preconception Care: The MCH program has conducted focus groups with adults trying to gather basic information about perceptions of preconception care and would ideally like to use consumers in a preconception care workgroup.

·         Medical Home: Working with University of Washington, the CSHCN program developed parent teams with individual medical practices. These teams have increased the family presence in the Medical Home.

·         School-Based Health Centers: The Child and Adolescent Health Section includes parent and youth involvement as a subcontract requirement for school-based health centers to include parents, guardians and youth in their community advisory boards and seek feedback from families through forums and satisfaction surveys.

·         Washington State Fathers’ Network: The CSHCN program provides funding to the Washington State Fathers’ Network to support a system of supports for fathers of CSHCN.