| They say it takes a village to raise a child -- but sometimes it just takes one passionate person to build a community.
In Tucson, that person may very well be Roni Spehn, TBI Service Coordinator with the Blake Foundation. And the community that she’s building is one that provides services and support for children and youth with traumatic brain injury (TBI) and their families.
“TBI – especially mild TBI – is a silent epidemic,” says Ms. Spehn. “It’s difficult for the individual, the family and the community to acknowledge. Yet the effects can be devastating. That’s why education is so critical.”
Educating people about TBI and its impact has been the focus of Ms. Spehn’s work since she participated in the Arizona Kids with TBI Demonstration Project in 1997. That project, spearheaded by the Governor’s Council and the Office for Children with Special Health Care Needs (OCSHCN), piloted a unique model for service coordination in Pima and Coconino Counties.
With the continued support of the Council and OCSHCN, as well as funding from the BHHS Legacy Foundation, that demonstration project grew into the statewide Service Coordination for Children and Teens with Traumatic Brain Injuries program.
Today, as a Service Coordinator, Ms. Spehn works with children and teens with brain injuries and their families. She helps them understand the impact of brain injury, arrange for services, and find their way through the often-confusing maze of programs and funding sources.
“Often families come to us in crisis,” Ms. Spehn says. “Particularly in cases of teens with mild TBI, people don’t understand that the changes in behavior they’re seeing result from a head injury. They ignore it, or try other solutions, until the problems reach a critical stage.”
To help youth and families cope with the effects of brain injury, Ms. Spehn and her Blake Foundation colleague, Jesse Pallante, initiated Tucson’s Brain Injury Information Gathering Group, better known as B.I.I.G.G. Meeting the second Saturday morning of each month, the group provides an informal venue for brainstorming, problem solving and peer-to-peer networking and support.
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When she’s not working directly with children, teens and families, Ms. Spehn’s passion is directed towards developing community partnerships to better serve individuals with TBI.
One important partnership is with Tucson’s University Medical Center (UMC). Working with UMC Chief of Staff Dr. Andreas Theodorou, Ms. Spehn developed a unique protocol for referral of children and youth who present at the Emergency Room with a traumatic brain injury.
“We receive referrals directly from the hospital staff,” says Ms. Spehn, “and, with approval or a parent or guardian, we contact families at the point of discharge. It’s a challenge, because families may not be ready to accept services at that point. But we contact them again…we never give up.”
Ms. Spehn is also working with staff at St. Mary’s Hospital in Tucson to ensure that children and teens seen there also receive support upon discharge from the hospital.
In addition to working with hospitals, Ms. Spehn has recently been involved in establishing a Tucson chapter of the Brain Injury Association of Arizona. “We have a great core group, including survivors, family members and professionals,” she says. “We’ve had our first organizational meetings, and we’ll be working soon on raising awareness about TBI and injury prevention in the community.”
And next on her list? “We need to do a better job of embracing the mental health system,” she says. “Most of the kids we see will need mental health support at some point. It’s important that providers are educated about the condition.”
Despite a “to do” list that most people would find daunting, Ms. Spehn says the families she works with are an continual source of inspiration. “They have incredible grace and resourcefulness,” she says. “They’re the real heroes – they never walk away.” |
