Family Networks Offer Communities Hope
The McGarry family, seen here on vacation, is part of a family-driven network in MD aiming to improve services and supports in systems of care for children and families.
Joan McGarry spent countless hours meeting with school specialists, requesting that her youngest son be evaluated. "We knew at an early age that he was going to have some struggles" Ms. McGarry recounted. "When he was four, he got kicked out of preschool." During the next five years, Ms. McGarry attempted to get her son evaluated to no avail. "Repeatedly, school counselors said they wouldn't test him since he wasn't failing," she said.
Ms. McGarry saw a pamphlet for the Maryland Coalition of Families (MCF) in a psychologist's office and called immediately. She spoke to a family navigator. After listening to her struggles with her son, the family navigator offered to attend the next school meeting to help advocate. The meeting was a success. A few weeks later Ms. McGarry's son was evaluated and received an Individualized Education Plan (IEP) that included an outline of learning goals, accommodations, and interventions for students with special needs.
The Maryland Coalition of Families is one of 42 organizations that make up SAMHSA's Statewide Family Network (SFN). Initiated in 1993, SFN is one of SAMHSA's infrastructure grant programs that help organizations build a solid foundation for delivering and sustaining effective mental health services. SFNs build on the work of SAMHSA's Child, Adolescent and Family Branch and the Children's Mental Health Initiative (CMHI), which focuses on developing systems of care across the nation for children, youth and young adults with serious mental health challenges and their families. "One of the most important things that we can do as a society is to ensure that every child has the opportunity to grow up to lead a full, productive life," said SAMHSA Administrator Pamela S. Hyde, J.D. "Through these grants, local organizations can provide the tools and skills that families of children with serious mental health conditions need to nurture their children."
Statewide Family Network grantees are part of a larger movement supported by the Affordable Care Act, which aims to coordinate and manage the full spectrum of health care needs of patients. The SFN promotes family-driven care, which means that families have a primary decision making role in the care of their own children as well as the policies and procedures governing care for all children with serious emotional disturbances in their community. SFN grantees provide individual peer support, information and assistance, support groups, trainings, and services to families caring for children with mental health needs. Two SFN programs that have seen tremendous success from this model are the Maryland Coalition of Families for Children's Mental Health and the Massachusetts Parent/Professional Advocacy League.
Maryland Coalition of Families for Children's Mental Health
Funded by SAMHSA's SFN since 1999, the Maryland Coalition of Families (MCF) serves as Maryland's voice for children's mental health, dedicated to building a family-driven network of information and support as well as improving services in all systems of care for children and their families. A system of care is a coordinated network of community-based services and supports that are organized to meet the challenges of children and youth with serious mental health needs and their families. MCF families receive support through family navigation services, and also attend events such as the Annual Legislative Day in Annapolis and raise awareness through the distribution of mental health awareness kits.
Impressed with how MCF handled her son's IEP situation, Ms. McGarry attended the organization's Family Leadership Institute , a program that trains caregivers to be better advocates for their child, and to be leaders in improving systems of care for children with mental health issues. The experience, she says, was life-changing. "Not only do you receive the training and the personal connections with the other parents, you also have a sense of responsibility," she recalls. "You have all of this information now and you need to go out and do something with this to help other families." Today, Ms. McGarry works as the REACH coordinator for MCF. REACH is an annual retreat where caregivers and youth attend training and education workshops on a variety of topics, including navigating the public school system, laughter yoga, and mental health first aid.
Jane Walker, LCSW, executive director of MCF, emphasizes that the major benefit to being part of the Statewide Family Network is the community network of family organizations across the country and the information shared among them, often through the SFN's Technical Assistance Center's webinars and through connections with other organization directors. Ms. Walker also explains that that being a member of the SFN carries with it some recognition with policy makers, families, and funders. It is this type of recognition that drew over 200 children, families, advocates, legislators, and policy makers to the coalition's 13th Annual Children's Mental Health Day in Annapolis this past January.
Recently, MCF used SFN funding to hire a Family Navigator for Military Families, a move which directly aligns with one of SAMHSA's eight strategic initiatives supporting America's service men and women and their families. The organization also hired a Transition-Age Youth Coordinator to assist families with children turning age 18 more specifically.
Massachusetts Parent/Professional Advocacy League
Melissa Romaniello's son was eight when he first attempted suicide and was diagnosed with bipolar disorder. Throughout the next year, Ms. Romaniello lost her job, dealt with her son's second suicide attempt, and watched her son be hospitalized for three weeks in a locked psychiatric ward. "It was a very traumatic experience for everyone in our family," she recalls.
Ms. Romaniello was put in touch with the Massachusetts Parent/Professional Advocacy League (PPAL), a SAMHSA Statewide Family Network grant program. The organization connected her to their Friday Family Support Group, which soon became a regular Friday activity for Ms. Romaniello and her family. "It truly is a very supportive environment," she explained. "We have children and families that are dealing with dyslexia, autism, anxiety, bipolar disorder, and schizophrenia. We can all relate to one another, and if your child acts out during the meeting, you are always welcome back the next week."
With help from the support group and PPAL, Ms. Romaniello was able to attend various trainings on topics ranging from legislative advocacy to grocery shopping with a child with special needs.
Providing networking and training opportunities is a primary goal of PPAL, which has served over 18,000 individuals and families in Massachusetts since the organization was started about 22 years ago. Through education, advocacy, outreach, and support, the organization provides hope for children with mental health needs and their families. "We place a strong emphasis on family-to-family support, being able to connect families and create better information," says Lisa Lambert, executive director. Aiding in the effort are over 400 family partners, a position unique to systems of care in Massachusetts, the majority of which are paid for as a service through Medicaid. All family partners have children with special needs and use their experiences to coach, mentor, and educate parents in similar situations.
Currently a family partner, Ms. Romaniello shares her story regularly with the families she serves. "I feel very strongly about sharing my story with others because people often don't want to talk about it. Part of being a family partner is sharing your story. If nobody had talked to me about it and nobody had shared their story, who knows where my family would be today."
According to Ms. Lambert, Massachusetts health reform changed the mental healthcare system and has further pushed the family-driven mental health care model. The PPAL regularly surveys families and family partners to collect information on what types of trainings or support services are needed. "The needs of the families and family partners change. Surveying and collecting data allows us to gauge how their concerns might be shifting or what topics need attention," explained Ms. Lambert.
The work being done by the Massachusetts Parent/Professional Advocacy League and the Maryland Coalition of Families demonstrates how this shift towards family-driven mental health care, and incorporating families into the workforce is improving care for children and youth who have mental health issues.
Ms. Walker says, "I've seen the mental health system evolve from one point in time where families were the problem to a point where families are leaders in the system. We tell families coming in for their very first session that they are pioneers, they are leaders, and that they are going to move the system even further along."
For more information about Statewide Family Network grants and other programs for Children's Mental Health visit: