By Greg Schell
Director, Washington State Fathers Network, Kindering
Project Coordinator, NJ Parent to Parent, Statewide Parent Advocacy Network
In this article, AMCHP highlights two partners that are leading the way in building programs and resources to engage fathers of children with special needs. Historically, family participation and involvement in MCH programs has focused on mothers, children, and adolescents. Today, programs identify the integral and unique role fathers play in advocacy and the health of their family and community. Washington State Fathers Network is an established program with more than 35 years of experience empowering and engaging dads and developing programs and resources to meet the unique needs of fathers of children with special health care needs. New Jersey Parent to Parent is emerging in this work, and in addition to exploring new tools, they recently hosted their first statewide conference for fathers of children with special needs.
Washington State Fathers Network (WSFN)
WSFN, whose heritage reaches back to 1978 when the Father Program was started at the University of Washington, is a statewide nonprofit, nonsectarian program that advocates and provides connection and resources for all fathers, men, and their families with children with special needs. The mission of the network is to promote fathers as crucially important people in the lives of children and families, at the same time celebrating being the father of a child with special needs. WSFN believes men are superb resources for each other, and fathers have unique needs of their own when it comes to caring for and raising a child with a chronic illness or developmental disability. With 16 chapters led by 14 trained and volunteer dads and one mom, WSFN responds to several thousand dads and families across the state and beyond each year. The website has as many as 300,000 hits per month and presentation and trainings have been held in 47 states, five foreign countries, and across Washington.
Fathers have unique ways of adjusting to change, just as moms do. Fathers sometimes have a hard time grasping their uniqueness and adjusting to the very confusing, frustrating, and challenging world of disability. When connecting and talking with other dads in this same situation, they discover they have many similarities. For instance, isolation, a very common feeling of many dads, is often paralyzing. They may not believe this before the dialogue begins, but the relief they experience once they make a connection is palpable. They are the first to notice and comment about this major transformation.
Research about WSFN confirms this in a very significant way. The University of Washington-Bothell assessed the outcomes of participating in WSFN, and the results are rather stunning. The cross-sectional design study had 146 members reply to 38 survey questions. The researchers concluded that participation in WSFN had a substantially positive effect, resulting in:
- Anxiety decreasing 97 percent
- Enthusiasm towards their child increasing 69 percent
- Feelings of joy increasing 67 percent
- Family relationships improving 77 percent
- Having someone to relate to increased 80 percent
- Feelings of hopelessness decreased 57 percent
This research is consistent with two previous looks at WFSN, one that occurred in 2003-05. That data was nearly the same but the study population was intentionally quite different. It included inner city African American dads, Latino dads, and Native American dads. The conclusion is quite clear: when dads of all kinds get together, the benefit is substantial and for many, a major turning point in their lives.
A few quotes from the annual state conference last year may provide some insight as to how important connections can be for fathers:
"Just a great day! Been an emotional year with highs and lows. This day helped keep things and life in perspective."
"Powerful stories from other Dads-I am so much better for my family after attending this day. (My wife loves it!)"
"…the Dads Panel and Open Mic continue to amaze me. But more important, the opportunity to celebrate dad is precious."
WSFN is a program of Kindering and is supported by Children with Special Health Care Needs Program, Washington Department of Health, other grants, and private donations.
New Jersey Parent to Parent (NJ P2P)
NJ P2P is based on a national model of peer support that connects parents looking for support with trained veteran "support parents." Support parents offer emotional support, information and resources to families, often at difficult times in their lives. Like most Parent to Parent programs around the country, NJ P2P has primarily supported moms. However, over the years the impact of a child with a disability on each member of the family – not just mothers, but fathers, siblings, and extended family – has become apparent. Then NJ P2P began to develop strategies to support whole families, and not just one parent.
A few years ago, an increase in the number of fathers attending school meetings, doctors’ appointments, workshops and conferences was observed. Fathers who were the primary caregiver for their child(ren) while the mother was working, or due to divorce, was becoming more prominent. And there wasn’t a lot of support being offered to fathers, nor were they being acknowledged of the great job they were doing raising their children. Then plans to address this gap and need began.
In 2008, a father was hired as the Southern Regional Coordinator to support fathers of children with special needs in a more meaningful way, realizing that fathers should be supported by other fathers. In June 2009, the first teleconference in honor of Father’s Day was hosted, and soon after, a new column in the quarterly P2P newsletter called the Fathers Corner was started. But more could be done. Last year, the first New Jersey statewide conference for fathers of children with special needs was held. It was a big undertaking, in no small part because the budget to put on this type of event was not there. P2P staff invited fathers to participate in a conference call to discuss
the need for and value of such an event. The six fathers who participated strongly agreed that the conference would be a wonderful opportunity. A pre-conference survey of fathers throughout the state was created to solicit ideas about the theme and topics of interest. Ten fathers and the seven P2P staff (the conference planning committee) reviewed the feedback and designed the conference.
The first New Jersey Statewide Conference for Fathers of Children with Special Needs: Educating, Empowering & Supporting One Another was held in Freehold, New Jersey on Jun. 1, 2013. This event was a partnership between NJ P2P, the New Jersey Self-Help Group Clearinghouse, and Parents Anonymous New Jersey. Fifty-four fathers attended the conference. The keynote speaker was Robert Naseef, PhD., father of an adult son with autism and a nationally known speaker on topics such as marriage, family, and fatherhood. Presentations during the conference included fathers who spoke about their experiences raising a child with special needs and lessons learned along the way and information on assistive technology and a variety of recreational activities available for children and young adults with special needs. The day ended with a networking lunch for fathers to talk amongst themselves and to meet with the 22 community and state organizations that participated as exhibitors. The evaluations from the conference indicated that the conference met the needs of the fathers in attendance.
During the month of June, NJ P2P also worked with fathers on the Essex Family Council to do a series of weekly lunchtime Dad2Dad teleconferences in honor of Father’s Day. In the future, the plan is to organize an annual event for fathers and update the P2P section of the Statewide Parent Advocacy Network (SPAN) website to include information and resources specifically for fathers of children with special needs. It is our hope that these activities have started a movement in New Jersey to give fathers more opportunities to come together to share their experiences and to learn from one another.
For more information about SPAN and New Jersey Parent to Parent, go to spanadvocacy.org.