This article first appeared in the August 2015 edition of The Noggin, the monthly ezine of the Brain Injury Alliance of Arizona.

The Brain Injury Alliance of Arizona’s resource facilitation staff. Top, from left to right: Jeanne Anderson and Courtney Carver. Bottom, left to right: Janice Podzimek and Anna Badilla-Edwards.

Connections that count: BIAAZ’s resource facilitation program helps survivors & caregivers navigate life post-injury Few things impact a brain injury survivor’s life more than access to the right service, agency or organization. Once a survivor is discharged from the hospital, the right resources are crucial in helping survivors and caregivers learn to navigate a new normal. Connecting members of the brain injury community to those resources is a core service the Brain Injury Alliance of Arizona provides. “We’ve had some say, ‘I never knew you were here, I wish I knew about you seven years ago when I had my injury,’” Jeanne Anderson, BIAAZ’s resource facilitation manager, said. The term resource facilitation may have ominous bureaucratic overtones, but the formal name doesn’t convey the caring, personal attention BIAAZ staff members give anyone who needs the service. BIAAZ staff understand, sometimes from personal experience, how the aftermath of a brain injury manifests differently for every survivor. They know even if two people are injured in the same part of the brain, aside from similar general symptoms, the injuries will manifest in ways as unique as fingerprints. That’s why resource facilitation always begins with a conversation, usually over the phone, though sometimes through an email. “We prefer a personal conversation, to hear about their whole situation and then determine the personal needs of each individual,” Jeanne said. After obtaining basic background information, such as what kind of injury a survivor has, how long it’s been since an accident occurred and what, if any, post-accident therapy has been received, the BIAAZ staffer will make suggestions as to what facilities, agencies or services the caller may benefit from. Callers aren’t always survivors, either. In many instances, concerned or frustrated family members or caregivers, 6

This article first appeared in the August 2015 edition of The Noggin, the monthly ezine of the Brain Injury Alliance of Arizona. facing changed behavior from the survivor, call BIAAZ. Many are not even sure what to ask. “Sometimes they see what’s happening but the survivor doesn’t see it,” Jeanne said. “The survivor’s behavior can be confusing, but we can validate that their impressions are genuine, that they aren’t imagining this.” Behavioral changes that stem from brain injury usually become apparent after the dust of the initial injury-causing incident has settled, when the survivor has returned home and attempts to get back to their old routines. Often, this happens when brain injury survivors who are released from the hospital had no behavioral rehabilitation or education about some of the long-term, permanent impacts of brain injury. At other times, hospital staff aren’t trained to educate caregivers and survivors. Insurance limitations are another factor. Still other hospitals simply have too many patients to guarantee proper exit counseling. Many caregivers assume that the release from the hospital means the recovery phase has ended. “I would say that most of our calls emanate after they’ve been home a short time, especially when they’ve been out three or four months,” Jeanne said. “Especially when they are trying to go back to school or work.” BIAAZ can’t fix everything, of course. It can’t change what insurance will and won’t cover, it can’t resolve legal issues and it can’t give medical advice. However, it can help survivors and caregivers get started on exploring possible options. It is rewarding and fulfilling work. “I love seeing the families and the survivors make that connection, and realize that there is help out there for them,” Jeanne said. A change you can see The result of a successful resource facilitation call can be extraordinary. Survivors may get connected with a rehabilitation service that allows them to increase their social skills and regain a life beyond home, where many survivors are bound, sometimes without proper diet and little mental stimulation. The phone call could lead to anything from entry into an extensive, out-patient rehabilitation program to informing a survivor about an accessible class or activity. Jeanne remembers one member who was in a wheelchair and couldn’t verbalize. Although he had a DigiVox, he wasn’t sure how to use it. Jeanne told his caregivers about Kamp Kan Do, the week-long camp at Whispering Pines Ranch in Payson, Arizona, for which the BIAAZ offered attendance scholarships. It was an amazing experience for the survivor.

“We knew that there was a need. We knew that other people were out there, but they didn’t know what to do.” Jeanne Anderson, BIAAZ resource

“His face lit up,” Jeanne said. “He was able to leave the house, socialize and make new friends.” One of those friends also used a DigiVox and showed him how to use it. Later, he even tried to sing the words to a song he enjoyed with other campers. “The staff, the volunteers, were just in tears because it was the first time since his injury he was able to get a sound out,” Jeanne said. “It’s one of the best memories from many years of camp.” The staff don’t always get to see the results of their work, but when they do it’s

always rewarding.

“Some survivors and family members call to say thank you,” Jeanne said. “They come in after they’ve been in rehab. Their speech is better, or they’re walking now with a cane or walker where they were never out of that wheelchair,” Jeanne said. “It’s amazing and emotional. Those moments make you want to work harder.” Deep roots, branching out The resource facilitation program is closely tied to the root foundations of BIAAZ, an organization that began in 1983 in Tucson because family members of survivors wanted to help other caregivers. “We knew that there was a need,” Jeanne said. “We knew that other people were out there, but they didn’t know what to do.” Jeanne, along with former Phoenix city councilwoman Kathy Dubs, had a small list of known professionals they knew could help survivors get rehabilitation. “She and I did that basically out of our home,” Jeanne said. “At first it was just a handful to start with. We had a very short list on one sheet of paper.” 9

This article first appeared in the August 2015 edition of The Noggin, the monthly ezine of the Brain Injury Alliance of Arizona. As the need for BIAAZ’s services grew, the organization expanded, eventually finding a home for its offices in the Disability Empowerment Center in Phoenix. Jeanne, working with Dawn Buri, BIAAZ’s data manager, and other staff slowly but surely began to cultivate resources. The list began to branch out from physicians to therapists, state agencies, attorneys and other fields. The resources were written on sticky notes stuck to large sheets of paper from an easel flip pad. Before long, the pages were “circling our office, all these flip pages with resources.” Finally, the pages were taken off the wall, and the resources organized into categories and put into a database. Jeanne Anderson, resource facilitation manager

The database is more than just a list of brain injury professionals and state agencies, however.

Many of the long-term care and residential facilities needed to be vetted prior to being put on the list, and not all made it. An elderly care facility, for example, is not appropriate for a 30-year-old brain injury survivor. Likewise, a mental health facility may be equally unequipped to handle the unique needs of brain injury. That led to BIAAZ offering brain injury training programs to staff members of residential facilities. “So many people in these areas weren’t aware of specific brain injury needs, and because of that we offer training in brain injury and different levels of brain injury to professionals,” Jeanne said. Now, to be a BIAAZ resource, a facility must have a staff member trained in brain injury and agree to train new staff in brain injury as well. Another program that grew out of the resource facilitation program is the BIAAZ’s network of support groups because so many caregivers expressed a desire to talk to people who understood their situation. Initially there was only one group, but now BIAAZ sponsors several groups throughout the state. Still, there’s more to do. “There’s potential to reach thousands of more people that have a brain injury,” Jeanne said. “I just want them to know we’re here to help them.”

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