You don’t have to talk with Christine Vergara for long to see that she genuinely enjoys her work as a Family Resource Coordinator at the Easter Seals Blake Foundation in Tucson, Arizona. The organization, which was founded in 1950, provides services to children and adults with disabilities.

Working to connect children with special needs and their families to the network of services throughout Southern Arizona, she is one of several dedicated staff members whose responsibilities include raising awareness about traumatic brain injury (TBI) and spinal cord injury (SCI), building relationships with families, and providing assistance and support to parents as they maneuver through an unfamiliar system.

Vistas recently caught up with Christine, who is also a member of the Arizona Governor’s Council on Spinal and Head Injuries.

Vistas: Tell us about the families you work with at the Easter Seals Blake Foundation.

Christine: We work with families whose children and/or youth whose ages can range from birth to age 21.

As a parent you want to be informed so that you can get the right services for your child. But we can’t guarantee that every family will want to participate in our program. Some parents will tell me “We don’t need your services,” or “Our doctor said that he or she is going to be okay.”

We have to keep in mind that the families are probably dealing with a number of issues at the same time: insurance, other injuries, perhaps a death. They aren’t able to follow through or their primary care physician may not agree with our assessment of the services that we think are needed.

When a crisis happens at school or at home, that’s when parents usually will call us back.

Vistas: What kinds of struggles are parents facing?

Christine: With mild TBI, children are eating, walking, and talking. They appear to be fine because a mild TBI is an invisible disability. On top of that, the family might be informed that it will be okay.

The hardest thing for parents is that you can never predict what will happen. It all depends on how the injury occurred, what medical intervention was provided, and the transition from the hospital to the home, or from home to school or work.

Vistas: How did you become a Family Resource Coordinator?

Christine: I was actually part of the original pilot program in the late 1990s when it was operating in only two counties – Coconino and Pima. The program went away and then came back in 2000 as a statewide effort.

It’s interesting to see the evolution and how far we’ve come. Early on, there were no specific services for people with TBI. In fact, kids with TBI weren’t accurately identified and were often placed in other categories such as OHI (other health impairments), when qualifying for services in the public school systems exceptional education program.

We still have challenges, but a lot more is happening now. I’m so happy that the Council is doing a good job of providing information to families through the Internet where they can easily access it.

Vistas: What are some of the issues that are important to you as a Council member?

Christine: Arizona is such a big state; therefore, one thing that concerns me is remembering the rural areas when it comes to outreach and information.

For example, Pima County extends all the way out to Sells (90 minutes from Tucson). We can’t forget other small communities like Ajo and Sahuarita. This really needs to be addressed, and the Council is finding ways of assessing the needs of the different communities throughout Arizona.

Bringing awareness and information to Native American communities is important, too.

There is not enough data from these communities right now because TBI is an invisible disability. It’s not so obvious, and changes in someone might only be seen at home, especially for those with mild TBIs.

With Native American families, they can’t always get into town due to transportation issues and service providers won’t go out to the reservations. Some families rely on the Indian Health Services for transportation to Tucson because it can be a day-long event for one or two appointments.

We have to be aware and respectful of cultural issues, and we have to establish relationships first before we can provide services. It is important to learn the best way for that community to access information.

I’d like to see some recruiting of Native Americans who can be trained to provide services to their neighbors.

Vistas: In your opinion, what is the biggest challenge that the Council will be facing?

Christine: Our biggest challenge right now will be working with this whole new population of people with traumatic brain and spinal cord injuries that are coming our way – the veterans of this war.

How survivors are affected by TBI and SCI, how parenting is affected…there are so many issues that will come up with this group.

The Council is very aware of this and figuring out how we can help. We’ve already had speakers from TRICARE (the military health system) give a presentation.

Vistas: Why do you like the work that you do?

Christine: My social work background, the perspective that I bring as a parent and being Hispanic really motivate me.

I’ve been a service coordinator for nine years. I have four children; my son has multiple disabilities, including cerebral palsy and seizure disorders. I have had to access the many systems for services and learned how to be an effective advocate for all of his needs. For some families it is a comfort to know that I have faced some of the same challenges, fears, and worries with my own child.

We now offer materials in Spanish because we saw that some of our Hispanic parents weren’t being responsive. It has been helpful to be bilingual and assist families when they needed to start services to address their child’s needs. Sometimes they were going to see doctors or providers or they had to attend a school meeting where no one spoke Spanish and there wasn’t a translator available.

I think I’m fortunate to be able to speak for families and be an advocate for those who can’t speak for themselves.