Tombolo

As children live longer with chronic health conditions, and health care shifts out of the hospital and into the home more demands are placed on families to add daily health care rituals to their already full set of daily responsibilities. Sixteen percent those children require at least 11 hours per week of care at home from a family member. As a result of care demands and time spent in hospitals, nearly half of these families report financial stress and having to cut back or stop working. Research shows that failure to address families’ needs negatively impacts child functioning at home, school and in the community.

Nora Murphy, Founder and Executive Director of Tombolo has experienced this first hand. As a single mother and the sole source of income for the family, she experienced a 75% reduction in income after her child’s diagnosis with a rare disease. Three years later she continues to experience how stressed and invisible these families are, how they have to fight for resources and support, and their quality of life is deeply impacted. Twenty percent of families in America have a child with a special health care need making persons with ongoing health conditions constitute the largest minority group in the United States (Seligman, 2007). What makes this minority group different than others is that it is one that people can join at any time as a result of accident or injury, leaving people ill-prepared to be a member of the group. In fact, only 15% of people with disabilities were born with their disability (Shapiro, 1994; Seligman, 2007).

These families need more visibility and support than they currently receive. And while it is much easier to point fingers and pass out blame than it is to connect with allies and work towards solutions, we need to move beyond blame. Tombolo is calling on each person to make a personal commitment to taking action we can reach a tipping point where these connections trickle up. We are not waiting for a policy or a program to trickle down. We are the change.

By allowing ourselves to appear vulnerable to our friends, colleagues and neighbors would enable us to ask for the help we need. And perhaps if we were open to having uncomfortable conversations with our friends who have children with health care needs we would be better positioned to authentically offer help and support. It’s these changes within ourselves and a lowering of our guards, a lessening of ego, which will allow us to connect as individuals. These connections strengthen our families and our communities. But it starts with each of us.

Your donation allows Tombolo to working with families, community members and volunteers through the following four programs:

Community Connections

Tombolo will connecting the families with high quality people and organizations in the Twin Cities community. We believe that collaborative partnerships with local schools, civic associations, non-profits and government agencies are critical for the well-being of families. Through a series of four meetings, a ‘Community Connector’ volunteer will work with families to create and implement an individualized outreach plan.

Family Bridges

We work with the family to identify family, friend, neighbors, and colleagues that could be a potential source of support, advocacy, and caring. Together we develop a plan for mobilizing this network using in-person and web-based strategies. The strategy is flexible and dynamic, changing to meet the changing needs of the families.

Circle of Care

Tombolo will match families with a volunteer that can give emotional and practical help. Volunteers have a wide variety of skills including: child care experience, health care experience, social networking experience, budgeting and finances, etc. and commit to helping a family for two or more hours per week.

Community Learning & Engagement

Community workshops, professional development and other engagement opportunities are led by local professionals for children and other family members to address specific topics of need. More than 15% of children have a chronic medical conditions and it is critical that professionals who work with these families understand the unique needs of these children and families.