Family Voices State Affiliate Organizations Learning from each Other: Experiences from Statewide Parent Advocacy Network of NJ (SPAN NJ)
Family Voices believes that all Family Voices State Affiliate Organizations (SAOs) and Family-to-Family Health Information Centers (F2F HICs) can learn from each other's experiences. The purpose of this sharing is to create the strongest network of family-run organizations possible for serving children and families around the United States. If you know of the work of an SAO or F2F HIC, or a specific program or success that you believe other organizations would benefit from hearing, please let us know. We will be doing a series of "success" stories designed to share information, beginning with this story about Statewide Parent Advocacy Network of New Jersey (SPAN NJ).
SPAN NJ was founded in 1987 by Diana Cuthbertson, with help from several other committed parents of children with special health care needs. The goal was to have a center where New Jersey parents could call and have their questions answered by parents who had first-hand experience raising children with special needs. The focus included creating resources and workshops to teach families how to partner with schools to educate their children appropriately. SPAN NJ's first grant funded the organization to serve as NJ's Parent Training and Information Center, and its second grant, received the following year, was from the New Jersey Department of Health.
SPAN NJ grew quickly over the next eight years, starting new programs that served families from the diverse communities in New Jersey. By 1995 SPAN NJ was supported by 2 grants, had 7 mostly part-time staff, and a budget of about $400,000/year. During that year Diana Autin came on staff at SPAN NJ as the new Executive Director. Diana was later joined by Debra Jennings who became Executive Co-Director.
Since 1995, SPAN NJ has grown to have 60 full and part-time staff people, be supported by over 20 state and federal grants at any one time, and operate with a budget of over 3 million dollars.
Family Voices spoke with Diana Autin to gather some of her insights about what SPAN NJ has learned over the course of its 25 year history that may benefit other SAOs and F2Fs.
FV: What do you consider to be some of your greatest satisfactions about SPAN's work?
- It is an organizational goal and priority to serve the full diversity of families in New Jersey, from every socio-economic, racial, and ethnic group, and every geographic area.
- Our staff reflects this diversity and speaks seven or eight languages. They have also personally experienced all the issues faced by the parents we work with and support.
- We have trained many parents in advocacy, and they have become strong parent leaders on all of the critical issues affecting NJ children and families.
- We helped to get the paid family leave insurance instituted in New Jersey, and facilitated the insurance mandate for children with autism and other developmental disabilities. (New Jersey is still the only state that includes children with other developmental disabilities, not just autism, in its insurance mandate.) This provided insurance coverage for children from all socio-economic and ethnic groups.
- We have reached out to and provided support for children who are at greatest risk from all segments of New Jersey society. This includes children with mental/emotional health care needs, as well as children who are risk for social/demographic/racial/ethnic/financial reasons, not just children with special physical health care needs. For example, we have been able to serve several immigrant communities in New Jersey, particularly Spanish-speaking and South Asian.
- Providing support for the wide range of at-risk children has in turn helped us serve families from diverse cultural backgrounds that have children with special health care needs. Sometimes these families will come to us for help with a service for a child who does not have special heath care needs, even if they're reluctant to access services for their child with special health care needs. Then when they get to know us, we are also able to provide support to them for their child with special health care needs. This happened numerous times in serving New Jersey families from Spanish-speaking and South Asian countries.
FV: What have some of the success factors been for SPAN in realizing these accomplishments that you think would be useful for other F2Fs to know?
DA: A few specific things come to mind:
1. Throughout our history, SPAN has focused on getting very clear about our Mission and Vision, and asking ourselves, "What is our role?" We have also sought feedback from our constituents to find out what the gaps have been in support and services for families. This feedback from families about what they need has helped us make a case to funders to get resources for necessary programs.
2. When we were seeking funding, we didn't go after only opportunities for programs that would support children with special health care needs. So, we have gotten funding that supports children who are at risk in general, or provides services related to specific issues or populations. In this way we have been able to serve children with special health care needs more effectively because they also fall into the other categories of children served, such as children eligible for CHIPRA.
3. When we felt a program needed to be created, we have gone ahead and launched it at whatever scale we could, even if we didn't have dedicated funding. For example, we created a pilot project for our culturally competent outreach and support project. Pilot projects allow us to get up and running, and to gather data and evidence of the need for a particular type of program, which then helps us get funding to expand into a full-fledged program. (Note from FV: This conversation brought to mind two expressions - "Do what you can where you are with what you have." and "Nothing succeeds like success.")
4. Who you hire for staff is very important. We wanted to have a diverse staff that represented our constituent population. However, we were originally offering part-time positions. But often the underserved parents we wanted to have working with us needed full-time work to support their families. So, we combined jobs and did job sharing with other agencies to create full-time positions in order to attract the types of people we wanted to work with. This was part of our strategy to build parent leaders from diverse, underserved communities.
It's also very important to hire staff people who will speak up to you and share their ideas. That means the leadership of your organization needs to be strong enough to bring knowledgeable, outspoken parents to your organizational table without limiting and controlling them. This models the type of openness to parent ideas that we want from state agencies and other decision-makers. As well, the organization's leaders need to give staff at all levels the opportunity to work in leadership roles.
5. Since the beginning we have been very conscious about building parent leaders and we continue to create and offer multiple training and advocacy opportunities for parents across all of our programs. Each parent is a leader, whether he or she is assisting his or her child alone, or providing help and support for many children and families.
6. We have been persistent about partnering with other organizations to apply for funding and share information. Sometimes people are afraid of competition in partnering, or of not getting their fair share. However, overall our experience of partnering has been extremely positive in all directions. And being willing to partner is key to receiving funding because funders appreciate a united front and collaboration.
FV: Thank you so much Diana! This has been very interesting and useful.
You may also find it helpful to listen to Diana's recent interview available at the web site of the National Center on Dispute Resolution in Special Education:
There are four clips where Diana responds to the following questions:
Clip 1: As you think about stakeholder involvement in decision making, are there particular benefits that you believe come as a result and any advice about how you can most effectively engage diverse perspectives in decisions?
Clip 2: As you think about the advice you give to families, are there nuggets that you feel are particularly helpful?
Clip 3: As you think about the Creating Agreement training, are there aspects of it that you believe are particularly important or powerful?
Clip 4: What are some of the issues you see related to race, culture, economic position that have bearing on the work that we're doing in dispute resolution?
If you know of the work of an SAO or F2F HIC, or a specific program or success that you believe other organizations would benefit from hearing about, please contact Melanie Rubin, Family Voices Director of Communications and Strategic Initiatives, 505-872-4777 or email firstname.lastname@example.org .