Family Partners; A Growing Commodity

By Loree Nauman, Abby Sallila, & Karen Scofield

As the saying goes, “It takes a village to raise a child,” but to raise a child with special needs your going to need a whole lot more! We are parents raising children with Autism. We know all too well the extreme trials, tribulations, joys, and triumphs of raising a child with special needs. Raising sons with Autism is a tireless, never-ending adventure that helps bring awareness to all. We are also “Family Partners” under LUK’s Community Service Agency. http://www.mass.gov/eohhs/gov/commissions-and-initiatives/cbhi/

So, what is a Family Partner and what do they do?

LUK Inc. receives reimbursement from MassHealth to form a Community Service Agency which delivers parent support and care coordination to families with children with serious emotional disorders. Under the Community Service Agency, Family Partners work with parents to help keep children in their homes and support parents in improving the health and well-being of children. 

Family partners are a valuable resource for parents who need a provider that’s “been there, done that” and gets what they are going through. We bring “lived experience” to the team working with the family. We have been through similar challenges with our own children and felt that hopeless feeling after receiving a life changing diagnosis. We are left asking ourselves, “What do I do now? Who can help me?”

When we first received our child’s diagnosis we had to rely on preschool staff to lead us in the right direction and connect us with the resources we needed to begin our journey. Asking questions helped us find our village which consisted of family, friends, professionals and other families that have walked in our shoes. 

As, Family Partners, we  provide emotional support to parents while helping them navigate child-serving systems and helping them find their “village”.  Our goal is to educate and empower them and connect them to the community resources they need so they are not alone. We do not believe in shaming and blaming parents for choices made in the past or questioning their parenting skills.  Rather we are focused on where we can go from here and how we can help them build their parenting skills to meet their child’s needs.

We help parents identify the people in their lives that are their natural supports who can support them after we are gone. We also help to bridge the gap between the Department of Children and Families (DCF), schools, housing authorities, juvenile court systems and a variety of community based organizations by opening the lines of communication between parents and providers. Working with bilingual families we also help to bridge the language barrier. We are transparent with both sides regarding intentions, concerns and successes. We also have to be transparent with parents about our role in protecting child safety.  Under state law, Family Parents are mandated reporters who report circumstances of suspected abuse or neglect of children.  At times, we have tough conversations with families when they disclose something to us that we need to report.

Family Partners teach parents how to advocate for themselves across various public systems of care.  Our mantra is to “Do For”, “Do with” and “Cheer on.” We get the ball rolling by doing some tasks for them. Then we “Do With,” by modeling and doing tasks together to teach them the skills to do it on their own. We then “Cheer on,” as they do these things on their own. It is rewarding to see a parent who becomes comfortable to make phone calls to providers or empowered and skilled enough to run their own meeting – things that once were too overwhelming and nerve wracking to even think about.To access state reports regarding the CSA go to http://www.mass.gov/eohhs/gov/commissions-and-initiatives/cbhi/cbhi-publications-and-reports.html .

 

However, the Family Partner role is expanding. Currently we work in collaboration with Intensive Care Coordinators (ICC’s) and Therapists to help a parent support their child. The role has just expanded in a pilot program in Massachusetts to work with families with youth in a residential placement or at risk for going into residential placement. The goal is to keep the continuity of support for the parents as they go through this process.

One drawback of being a Family Partner is burnout, compassion fatigue and how vicarious trauma can affect us. We are also dealing with our own daily challenges at home. We come to work and jump into the trenches with families who are in the midst of a crisis situation. Their child may need to be screened by the mental health Mobile Crisis team, then taken to a hospital for the first time and placed out of their home for the first time. We have been there, standing side by side with a parent as their children are being removed due to protective concerns. Emotions run high and it is impossible to not be affected by this. We then have to go back home and deal with our own crises and stressors related to our own children.

Our job can be exhausting at times, but we do it because we understand the struggle that families go through, and know that with hope, support and guidance things will get better. We started out as new parents, not knowing much about how to care or advocate for our special needs children. Through the ups and downs we look back and feel proud, accomplished, a little tired, but know, looking at our own children, that it has been worth the blood, sweat, and tears shed along the way. We love what we do as Family Partners because we have “trained” during our child’s whole life for this role and see how valuable it is to have someone mentoring you, supporting you, reassuring you, listening to you, and standing with you through it all.  Family Partners are essential and vital to the success of parents with special needs children in our system today.

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