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THE NOGGIN

The Brain Injury Alliance of Arizona

The Brain Injury Alliance of Arizona (BIAAZ) is a nonprofit organization dedicated to preventing brain injuries and to im-

proving the lives of individuals with brain injuries through prevention, education, information, and community support.

January 2016 Vol. 1 Issue 8

Bowl for Brain Injury 2016:

Familiar faces return to signature fundraiser You can see almost anything at a Bowl for Brain Injury event. Previous years featured bowling brides and young pageant winners throwing a ball down the lane. Some bow-lers even bring an extra brain…encased in their bowling ball. And some teams get a little zany.

But what every bowler who participates in the annual fundraiser for the Brain Injury Alliance of Arizona has in common is raising money that directly sup-ports brain injury survivors and caregivers. It’s what keeps many teams coming back year after year.

The most notable use of Bowl for Brain Injury funds is Camp Can Do scholar-ships that make the week-long, adult session at a fully-accessible camp in Pay-son, Arizona affordable for BIAAZ members.

Funds also support BIAAZ’s resource facilitation, a core service that helps care-givers and survivors connect to the services they need and get support. Not to mention the myriad of other services provided by BIAAZ, like staff training for facilities with brain injury survivor clients, community outreach efforts and fun,

like the Tucson socialization group.

This March some of the most promi-nent bowlers from past Bowl for Brain Injury events are ready to do it all again.

Kim Covington, the Honorary Chair-woman of Bowl for Brain Injury in 2014, was that year’s top fundraiser, raising $2,810.

The former 12 news anchor survived a car accident in October 2013 that left her a traumatic brain injury survivor, so her passion and dedication aren’t surprising.

Continued on page 3...

In this Issue Profile: BIAAZ

members Chris & Amy Hotaling

Meet BIAAZ: Staff members Dee Farrand and Meg Bakke

Advanced Neurologic Reha-bilitation brings brain injury ser-vices to Gilbert

Rehab Ready: Physiatrist Dr. Christopher Barnes

ADA Matters: Paint your own paradigm

The Gavel: The challenges of presenting an MITBI case

Kim Covington, the Honorary Chair-

woman of Bowl for Brain Injury 2014,

will be back at the lanes this year.

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From Executive Director Carrie Collins-Fadell This time last year I lived in upstate New York and had my photo taken with this two-story snowman. My move to Arizona in the spring of 2015 to take the helm of the Brain Injury Alliance of Arizona means things have changed quite a bit for me since that photo was taken.

Just as things change for people, organiza-tions go through life-cycles and changes as well. Last year some new faces joined the Brain Injury Alliance of Arizona and in this month’s issue of The Noggin you’ll meet two of them.

Meg Bakke, our new Operations Manager, comes to us with a decade of experience with a national nonprofit. She jumped right in securing the day-to-day operations so the resource facilitation pro-gram can run smoothly and many members have already had positive interactions with her. Being a part of BIAAZ’s staff is personal for Meg. In addition to being a talented professional, she has a fa-milial experience with brain injury.

You’ll also learn more about Dee Farrand, who we profiled as a survivor in an earlier edition of The Noggin. Dee is a brain injury survivor herself who brings passion and commitment to her post as BI-AAZ’s full-time Events & Special Projects manager. She’s already hard at work making this year’s Bowl for Brain Injury a success.

I’m also excited to begin the new year with the support of Jefferson Holm, physical therapist and founder of Advanced Neurologic Rehabilitation in Gilbert. Jefferson has brought much-needed ser-vices for brain injury survivors who live in the southeast valley and plans to be an ardent supporter of BIAAZ in 2016. In these pages you’ll read about his state-of-the-art facility and why he chose to spe-cialize in treating brain injury. But this won’t be the last you’ll hear of Jefferson. Look for him in March as he laces up his bowling shoes for Bowl for Brain Injury.

Finally, an important reminder: Members, survivors, donors, and volunteers will want to mark their calendars and join us on Thursday, January 28, 2016 from 5:30 to 7:30 p.m. for the BIAAZ Annual Meeting. We will honor our Camp Can Do volunteers, top Bowl for Brain Injury par ticipants and teams, corporate sponsors, professional members and more. Last year was a great year. Help us send it out in style! You can register at biaazannualmeeting.eventbrite.com or contact our BIAAZ Operations Manager Meg in the office at 602-50-8024 or e-mail operations@biaaz.org.

There’s already a lot to look forward to in 2016, and it’s thanks to our wonderful staff, volunteers and members like you.

Happy New Year,

Carrie Collins-Fadell

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Continued from page 1...

Kim attributes part of her fundraising success to the 2014 bowl-ing event’s proximity to her accident.

"My news vehicle accident and the traumatic brain injury it caused were top of mind for many people,” Kim said. “That made the Bowling for Brain Injury fundraising relevant for donors.”

Kim knows the time that has passed since her accident has not made supporting brain injury survivors any less important. Since her accident she has become a board member and one of BI-AAZ’s most vocal advocates.

But it’s her personal experience that underscores for Kim how every penny counts.

“Before the accident I had never heard of BIAAZ and all of the services it provides, including the premier camp for survivors, Camp Can Do,” she said. “It's incredible what BIAAZ can do on such a limited budget.”

Today, Kim is focused on ensuring BIAAZ can continue its work.

“BIAAZ needs help filling in the gap, and now I know how criti-cal our Bowl for Brain Injury event is and I will do everything I can to meet the needs of the brain injured community," Kim said.

Marc Nielsen, also a brain injury survivor, has been a regular participant at the event for years.

“A brain injury can occur in an instant, changing lives forever,” Marc said. “My TBI changed my life forever and the BIAAZ helps caregivers, survivors and their families, plus professionals working with brain injuries, to en-gage in programs of support and education.”

For Marc, it’s not just about raising money for a great cause; it’s also about having some fun.

“So let's all Bowl for Brains on March 12, and raise money for the good work of the BIAAZ,” he said. “You may even meet a new friend."

Marc and Kim don’t bowl by themselves, however. In order to bowl, participants need to create or join a team, which adds to the fun spirit behind the fundraising.

Many teams are made up of brain injury professionals, not surprising given that BIAAZ is a valuable professional resource that facilitates professional network meetings and the annual conference for professionals. Bowl for Brain Injury offers a great way for coworkers to spend time together outside their work environment. In 2014, the Everlasting Services team, made up of residents and staff of the long-term care facility company, was one of the top donors. The team held a pre-event bowling session that raised $700 which they donated to BI-AAZ.

And bowling isn’t the only way one can participate. BIAAZ’s Director of Development Josh Belkin said there are plenty of options for those who don’t want to don bowling shoes themselves.

"There are a lot of different ways for you to get involved. You can form a team, support a bowler, donate a prize or buy some raffle tickets,” Josh said. “The main thing is for you to get involved!"

You can register now for Bowl for Brain Injury 2016, so get a group of friends together, think of an awesome team name and let the fun – and fundraising – begin!

To learn more about the event, contact Josh at the BIAAZ office by calling (602) 508-8024.

BIAAZ member and brain injury survivor Marc

Nielsen bowls every year .

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Healthy Living to meet quarterly

with longer classes in 2016

The holidays are synonymous with tempting treats and even the Healthy Living Group, the monthly Project Inde-

pendence and Empowerment class facilitated by BIAAZ, took some time to indulge during its December class.

Using just a food processor and a handful of ingredients – goat cheese, cream cheese, pesto and sun-dried tomatoes

in olive oil – Juli Bryan, the licensed nutritionist that leads the snack portion of the class, taught everyone to make

a decadent dip.

Bryan conceded that the olive oil, pesto and cheeses did pack a caloric punch, but she also pointed out the dip was

full of good fats, had no sugar was and gluten free.

“If you’re going to indulge, it’s the best way to do it,” Juli said.

Besides, she added, the versatile recipe could be easily tweaked to be healthier. Neufchatel could be used in place

of cream cheese and the olive oil can be drained from the sun-dried tomatoes, both of which would cut down fat

significantly. Paired with rice or whole-wheat crackers, the and with festive green and red layers, the dip is a per-

fect take-along dish for a holiday party.

Since it began two years ago, the Healthy Living class had followed a popular format. Juli spends about half an

hour during the beginning of the class teaching attendees to make a healthy snack. Afterwards, there’s usually a

mini-class or presentation. In December, for example, Chris and Amy Hotaling gave a presentation on mindfulness

(see our page 6 profile on the Hotalings in this issue).

Starting in 2016, however, the class will change its format. Instead of being held monthly, classes will be once eve-

ry four months or so. And, rather than being only an hour, they will now be two-hour long sessions.

The new format will allow topics to be explored more in-depth, possibly taking the form of a full introductory

class.

For more information on Healthy Living, or any of the activities facilitated by BIAAZ call the office at (602) 508-8024.

Juli Bryan demonstrates how to make a healthy dip perfect for holiday

parties during the December Healthy Living Group .

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Guiding others with

the map they made Chris and Amy Hotaling use their experience

with brain injury to help others move past it

The brain injury community is a tight-knit group. Nowhere is this

more apparent that at brain injury support group meetings. Every

month in Arizona rooms fill with strangers whose lives are forever

altered, all of whom share an experience that, though common among

all participants, is perversely unique for each member, too. As the say-

ing goes, “If you’ve seen one brain injury, you’ve seen one brain inju-

ry.” It’s not unusual for support groups to become second families for sur-

vivors and caregivers, especially as many members watch their own

pre-injury support networks fade away in the months following the

catastrophic injury. Meetings become one of the few, if not the only,

social outlet afforded to caregivers and survivors, especially during initial phases of recovery. Even after the dust

has settled, many support group members continue to attend meetings for years, finding solace in people who can

empathize with the often baffling, and frequently invisible, long-term impacts of brain injury. The Brain Injury Alliance of Arizona facilitates seven support groups throughout the state, but it owes the success

of one of its most successful groups to a very special couple, Chris and Amy Hotaling. When Chris and Amy came to Arizona in May of 2006 from New Jersey, Chris was a brain injury survivor who

had already gone through years of extensive therapy, much of it led by Amy herself. They had been involved in

one of Brain Injury Association of New Jersey’s support groups and wanted to see what the Arizona branch could

offer. As it happened, a support group was needed in the northwest valley at HealthSouth Valley of the Sun Rehabilita-

tion Hospital. Chris, prior to his accident during the late-1990s, was a trained counselor who had worked for the

New York City School District. Chris hadn’t worked since his accident and had some trepidation about facilitat-

ing a meeting, but felt more confident with Amy by his side. Twenty-three people showed up to the first meeting. Chris, still recovering from his own brain injury, used several

coping mechanisms to help him be successful. He read hand-written notes aloud and asked that participants speak

one at a time because overlapping sounds made it difficult for him to focus. The meeting must have gone well because, as Chris put it, “it just grew exponentially from there.”

Soon, so many people attended meetings that Chris and Amy had to split everyone into two groups (one for fami-

ly members and another for survivors) just to keep meetings manageable. Before long, the group grew in its scope

Chris and Amy Hotaling, key members

of BIAAZ, use their own experience

navigating brain injury to help others in

one of BIAAZ’s first support groups.

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as well. A social committee was formed and fundraisers were held to finance outings and activities. A holiday

party became a much-anticipated holiday tradition. “We did all kinds of things,” Chris said. “It was just so touching, to see such a need, and people come each

month.” By the time Chris and Amy stepped away from the group five years later in 2011, over a 150 families attended

the holiday party. The group’s members weren’t the only beneficiaries of the supportive environment. Amy marveled at Chris’s

own improvement. He no longer needed a strict format to keep from getting overwhelmed. Today, Chris walks

around a room while giving presentations, ad libbing when necessary with ease. “But it’s not only Chris,” Amy said. “We noticed the survivors in our group, month after month after month, see-

ing their growth.” In one of those small acts that within the context of brain injury are huge breakthroughs, one day a brain injury

survivor who never spoke aloud announced he had something to say. The group quieted and, for the first time,

the man spoke to the room full of members. It wasn’t uncommon for caregivers to tell Chris and Amy that,

thanks to the group, they finally felt like they weren’t alone. In June 2007 Chris was asked to be part of a lunch panel at one of BIAAZ’s first Rays of Hope conferences. “One thing led to another as the story goes and soon both of us

were being asked to give presentations,” Chris said. Chris credits Robert Horton, a contractor for the Governor’s

Council on Spinal and Head Injuries, for their early involvement

in brain injury education and presentations.

“Robert’s encouragement, along with the support of others at the

council and BIAAZ, provided the opportunity for me to reclaim a

piece of my life before my injury that I thought was lost forever,”

Chris said.

In the meantime Amy, who lost a banking job when the Great Re-

cession hit in 2008, found fulfilling work as one of BIAAZ’s re-

source facilitators. “That gave me a feeling of wholeness and that I was here for a

purpose because there were so many callers that I helped with the

true knowledge of living through this,” Amy said. And live through it Chris and Amy had, without much of the

knowledge and support available to today’s survivors and caregiv-

ers.

Continued on next page...

Chris Hotaling giving a presen-

tation on mindfulness during De-

cember’s Healthy Living Group.

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Continued from previous page…

Brain injury “back then” What we know about brain injury and how to treat it has come a long way during the past two decades, a fact few

people can appreciate like Chris and Amy. When Chris was injured 17 years ago, even advanced technology for

the time couldn’t detect certain kinds of injury. At the time, Chris and Amy were young professionals living in New Jersey who commuted to New York City.

Amy worked for a high-level financial institution managing the documentation department in midtown Manhat-

tan. Chris was a guidance counselor under the New York City Department of Education. Chris was being recruit-

ed for an assistant principal position he was slated to begin the following semester. One day, a fire broke out in Chris’s building. During the evacuation a steel fire door hit Chris on the right side of

his head. “From what they tell me, I hit a couple of concrete walls and eventually the floor,” Chris said. “When I regained

consciousness I, of course, had no clue what happened.” When Chris awoke, a colleague stood over him.

She helped him get up and evacuate the build-

ing. The fire was eventually extinguished and

Chris went back inside to return to work. But the

colleague who had revived Chris urged him to

report the incident. “I think she really saw some things happening

that I wasn’t aware of,” Chris said. “I didn’t

think it was really a big problem, I had a head-

ache, but from what she said had happened I

expected that.” They went to the assistant principal’s office where Chris was asked to fill out a report. To Chris’s surprise, he

couldn’t fill out the form in front of him. “I wasn’t able to do it,” he said. “My colleagues would say, ‘Just write this down,’ and that’s when I realized

something wasn’t right because my hands seemed disconnected from my brain.” Chris was transported by ambulance to an emergency room. There, while examining Chris’s head for physical

injury, he asked Chris two questions: who the president was and how many fingers he held up in front of Chris’s

face. Chris answered both questions correctly and was discharged with instructions to take two aspirin and have

his wife keep an eye on him. But when Chris walked down the hall to meet Amy in the hospital lobby, he had to use the wall to keep his bal-

ance. That was on a Friday. Over the next two days, Chris’s issues worsened. His left foot began to drag behind

him and he couldn’t navigate where he was going.

Continued on next page...

“My colleagues would say, ‘Just write

this down,’ and that’s when I realized

something wasn’t right because my

hands seemed disconnected from my

brain.” ~ Chris Hotaling, after a steel fire door

struck him in the head

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Continued from previous page…

“If I wanted to walk towards Amy I’d end up on the other side of the room even though I was looking at her,”

he said. His speech devolved from a slur to a stutter. On Sunday, Chris woke up to the discovery his face was numb. The couple assumed Chris was having, or had experienced, a stroke. They went back to another emergency

room where a CT scan was performed on Chris. At the time, doctors speculated there may have been a micro bleed

that went undetected. In any case, enough time had passed from the initial impact that some of the organic dam-

age may have already healed. Chris’s rapidly deteriorating condition, however, was undeniable, so doctors used his symptoms to patch togeth-

er a diagnosis. “That’s the first time we heard the term brain injury,” Amy said. By the time Chris was admitted into a rehabilitation facility, about four to six weeks later, he couldn’t speak at

all, walk on his own or feed himself. Chris himself was only partially aware of his condition. He thought he walked into the rehab facility helped by

Amy and two of his brothers. But five years later Chris learned his family had essentially carried him through

the doors as his feet hung uselessly. When he got through the doors of the facility, attendants immediately strapped him into a wheelchair. He could

barely feed himself or hold his head up. That was when Chris said he realized he was in for a long road of re-

covery. After several weeks of inpatient therapy, Chris began 18 months of outpatient therapy that consisted of every-

thing from participating in a study for emotional regulation – he was having emotional outbursts – to traditional

physical, speech and language, occupational, cognitive therapies, as well as counseling. Chris left the facility better than when he entered – he could now walk with a cane – but he still wasn’t recov-

ered and he and Amy both knew it. “Even when I finished outpatient, I felt kind of patched together,” Chris said.

Wife, caregiver, partner That’s when Amy stepped in and became Chris’s de facto at-home therapist. One of Chris’s physical therapists

had offered to guide Amy with more exercises once Chris reached a certain point. Cognitively, however, Amy was on her own, so she followed her gut instincts. She went to a bookstore and

bought first-grade reading and Math workbooks, having Chris work on them daily. Amy supplemented that

work by playing games like Scattergories with Chris. Throughout this period, Amy made a conscious effort to Continued on next page...

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Continued from previous page… merge Chris’s mental and physical recovery. “Even when we would go for a walk, I would ask him those questions from Scattergories, so he would have to

walk and think at the same time,” Amy said. “I was always trying to work his brain.” Amy was ever-vigilant, watching for both signs of fatigue and mobility issues. When she saw Chris was having a hard time reaching for things, she would ask him to reach for soup cans from the top shelf of the pantry, stand-

ing behind him in case he lost his balance. She learned to watch for the signs that he’d had enough and needed

rest. “What was amazing was Amy’s background was not in therapy, it was

in finance,” Chris said. “But she had this really incredible ability to just

observe me, see what my challenges were, and use her gut instinct on

how she could use these practical, functional tasks to help me improve

the challenges I had.” To help Chris’s balance and coordination, Amy took him to the pool.

They were both swimmers, but Amy worried at first she’d made a mis-

take. The water’s ripples caused a vestibular reaction in Chris that was

so severe at first Chris could only stand in the pool. But they went back, day after day, and soon Chris could lift a leg while

holding on to Amy. By the end of the summer, Chris swam the length

of the pool using a modified crawl stroke. Amy saw it as a watershed moment. “I call it a huge brain growth,” Amy said. Both Chris and Amy attribute much of Chris’s success to his willing-

ness to participate in activities. “I was always a willing participant, I was always eager to improve,”

Chris said.

Step by step, Chris and Amy rebuilt their lives. Chris began to drive again and Amy returned to work. But the

non-physical, permanent impacts of Chris’s injury made New Jersey and New York unbearable for Chris. The

noise often overwhelmed Chris, who had trouble going grocery shopping by himself. And though Chris could drive again, he still struggled with navigation. Amy sometimes received calls at work

from Chris asking where he was because he had gotten lost. Driving in ice and snow was utterly exhausting for

him. They realized that to improve their quality of life, they would have to move. Chris had family in Arizona, where

Continued on next page...

Chris and Amy Hotaling at the 2015

Brain Injury Alliance of Arizona Pro-

fessional Conference, where they

were featured speakers.

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Continued from previous page…

the couple had planned to retire anyway, so Amy left her job in New York and in May of 2006 the couple found themselves in Arizona.

An ending, and a beginning In a way, stepping down from the support group in 2011 was an epilogue to what had been a long, often times

grueling, recovery journey for Chris and Amy. But it was the beginning of a new volume of their lives, too. Amy has since returned to banking. Chris has con-

tinued to counsel, in a manner of speaking, through Aspire Place, a life coaching company he and Amy formed

that focuses on moving forward after brain injury and other significant, life-changing events. Chris describes it as a “non-therapeutic approach” to learning to live with brain injury, with a focus on getting through the practical aspects of a person’s day. “What it allows us to do is coach others, caregivers and survivors, on moving forward, living with their brain

injury, learning that it doesn’t define who you are,” Amy said. The couple also continues to give presentations and reach out to the brain injury community. Resource Facilitation Team Manager Jeanne Anderson knows first-hand the value of Chris and Amy’s unique perspective.

“I have seen professionals, survivors, and family members all connect with them and learn something from Chris and Amy’s

talk,” Jean said.

They have also written a book together with Mark Leads, Learning to Live Again…a day at a time.

Coping with both the ever-present impacts of brain injury but not allowing it to subsume everything in one’s life

is a difficult balancing act. But that’s exactly what Chris and Amy have learned to do. Chris and Amy will once again be presenting at the BIAAZ May 2016 Rays of Hope conference for brain injury survivors and care partners. To register visit raysofhope2016.eventbrite.com or call Meg in the BIAAZ office at 602-508-8024

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Brain injury introduces survivors and caregivers to an array of health care providers who specialize in brain injury. This list of

specialties and sub-specialties can be overwhelming or confusing to caregivers navigating the system. We’ve all heard of an

optometrist, for example, but how is a neuro-ophthalmologist different? The Brain Injury Alliance of Arizona offers referral ser-

vices to help people navigate these sometimes overwhelming options. Here in The Noggin, each month we feature a brain

injury specialist and explain what they do and the role they play in the recovery process.

Dr. Christopher Barnes, physiatrist

Dr. Christopher Barnes’s formal title is a mouthful. He’s a physical

medicine and rehabilitation specialist, or PM & R, at HealthSouth

Valley of the Sun. But most would call him a physiatrist for short.

A brain injury survivor typically sees a physiatrist after their release

from the hospital once they’re transferred to a rehabilitation facility.

The physiatrist is trained to work with the team of professionals who

help people with catastrophic injuries or issues navigate recovery.

“We’re trained to work with the physical therapist, the occupational

therapist and the speech therapist,” Dr. Barnes said.

As the patient recovers, the physiatrist follows the person’s medical progress, determines if any equipment is

necessary for their continued recovery and treats any specific medical issues.

Within the context of brain injury, that can include treating physical symptoms like TBI fatigue, headaches,

neurogenic bladder and bowel dysfunction and agitated behavior stemming from brain injury.

Because brain injury is a sub-specialty of physiatrists, a survivor may benefit from seeing one even several

years after their recovery is complete.

“Seeing a physician even years later is not a bad idea,” Dr. Barnes said. “Even just for the satisfaction of

knowing what you’re dealing with and finding out if there’s more therapy or more counseling or a different

medication that can be helpful.”

For Dr. Barnes, being a physiatrist is a lifelong calling.

“I just love being a doctor, just always wanted to be a doctor,” Dr. Barnes said. “So I gain satisfaction from

doing every day what I always wanted to do.”

Part of what drew Dr. Barnes to his specialty is helping people “who are at a point in their life when the chips

are down.”

“Something catastrophic has happened and you help them pick up the pieces,” he said.

Physiatrists complete a one- to two-year fellowship following their three-year medical residency. They may then earn certifications or do focused fellowships in sub-specialty fields, such as brain injury, spinal cord inju-ry or neuromuscular medicine.

Dr. Christopher Barnes, PM & R

HealthSouth Valley of the Sun

Rehabilitation

Rehab Ready

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Where brain tech meets heart Advanced Neurologic Rehabilitation brings state-of-the-art facility to the East valley For physical therapist Jefferson Holm, the November opening of Advanced Neurologic Rehabilita-tion was a life-long dream come true.

The facility, located in Gilbert, is one of the only privately-owned rehabilitation centers in the east valley that specializes in treating brain injury survivors.

“The great thing about our facility is we’re a one-stop shop,” Jefferson said. “We’re really outfitted well to work with this population from a technology standpoint and from an experience standpoint.”

The facility offers occupational, speech and physical therapy. It is connected with an extensive network of brain injury specialists like neuro-optometrists. That allows the Advanced Neurologic Rehabilitation staff to form comprehensive teams that work on all facets of a client’s rehabilitation.

Cutting-edge, proven technology also sets the facility apart. Survivors with balance issues can wear fren-zel lenses that pinpoint where balancing challenges stem from.

“We can put on the lenses and look to see if the dizziness is from a central origin, like from the brain injury itself, or whether it’s coming from a peripheral origin like the inner ear,” Jefferson said.

Much of the physical therapy equipment, like the treadmill and elliptical, is weight-supported allowing patients with mobility issues to exercise. Functional electronic stimulation is used to help patients who have difficulty with certain movements like reaching.

“We try to utilize the latest technology, but also evidence-based research, and marry the two to really maximize outcomes for our patients,” Jefferson said.

Jefferson first became interested in working with brain injury survivors at Arizona State University where he earned his undergraduate degree in kinesiology. Part of his undergraduate work included shad-owing Arnie Fonseca, the owner a Tempe rehabilitation facility called the Neuro Institute.

Arnie, himself the step-father of a traumatic brain injury survivor, “really inspired me to work with this population,” Jefferson said. “When I did that shadowing I really fell in love with, not only working with this population, but also the idea of creating something like [the Neuro Institute] myself someday.”

So Jefferson moved across the country to earn his doctorate in physical therapy from the University of Pittsburgh. To gain more experience with brain injury clients, he spent several years working for the Center for Neuro Skills, a California facility that exclusively serves brain injury survivors. While there, Jefferson became a certified brain injury specialist.

Much of the physical therapy equipment at Advanced Neurologic Reha-

bilitation, in Gilbert, is weight supported so patients with limited mobili-

ty can use it.

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Jefferson, however, knew there was still a need to serve brain injury survivors in the east Phoenix valley. So he moved again, this time back home to Arizona. Now, his vi-sion of opening his own facility, one that follows in the footsteps of the Neuro Institute that inspired his career path years before, is a reality.

Like many brain injury professionals, Jefferson enjoys that with the help of a diverse team of professionals he is able to help people he sees as part of an oft-overlooked demo-graphic.

“I really enjoy working with the brain injury population be-cause it’s kind of this population that is a lot of time forgot-ten,” Jefferson said.

Part of that, Jefferson said, is because not all of a brain inju-ry survivor’s challenges are physical or immediately obvi-ous, but still make reintegration back into the work force challenging or put a strain on the survivor’s family relation-ships.

“All these things that are unseen, and it’s really difficult for outsiders to see the deficits that life beneath,” Jefferson said. “It’s a struggle for this population to feel like their needs are being met and that people understand where they’re coming from.”

Which is why Advanced Neurologic Rehabilitation offers services like speech therapy for high-functioning clients.

“Using a team approach, we really can make a difference in these people’s lives that is not always ob-servable,” Jefferson said.

Jefferson isn’t limiting his support to his facility’s clients, however. He’s also the newest member of the BIAAZ Advisory Council. And he’s going to participate in Bowl for Brain Injury 2016.

“I’d love to be a volunteer and contribute whatever I can to this population,” Jefferson said. “I love that (BIAAZ) provides a centralized location for patients with brain injury to go to get the help and the resources they need,” Jefferson said.

Advanced Neurologic Rehabili-tation is in the process of being added to the Brain Injury Alli-ance of Arizona’s resource da-tabase. All BIAAZ resources meet very specific criteria. BI-AAZ staff does train facility staff members to work with brain injury survivors. For more information, call (602) 508-8024.

Jefferson Holm, founder of Advanced Neuro-

logic Rehabilitation, knew early in his career

he wanted to work with brain injury survi-

vors.

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ADA Matters AMERICANS WITH DISABILITIES ACT

By Michele Stokes, ADA compliance

specialist for the City of Tempe

Michele Stokes, deaf/oral/lip reader, is currently the ADA Compliance Spe-

cialist for the City of Tempe. She has been in the accessibility field for over 25

years. She also serves as the CEO for Behold Charities International, a new

non-profit, whose mission is to facilitate universal design in accessible afford-

able housing. She also a brother who has had a traumatic brain injury since

age five. Michele is married to Bill Stokes; has four adult children, 11 grand-

children, one great grandson, three dogs, five cats, and a dozen fish. She re-

ports there might be a gecko or two in the house, as well.

Paint your picture, create your paradigm! I ran across a quote attributed to artist Pablo Picasso: “There is only one way to look at things

until someone shows us how to look at them with different eyes.” He was a genius, but not for

the reason you might think. Not because of his art, nor his abilities, though substantial. He was a

genius who had dyslexia and intellectual disabilities.

He made them work for him. He celebrated his human-

ness!

He was a genius because he created his own para-

digm, one that rigorously defied the current norms that

simply did not work for him. He looked with different

eyes the thing he loved, art, and then went about

changing the world with it. And yet, his efforts in creat-

ing this new paradigm and his efforts toward artistic

innovation were not about looking forward to new tech-

nologies or the skills and techniques of the future. They

were instead focused on looking back and unpacking

the baggage of cultural expectations and tired creative

standards and traditions to become an artist that was

more fully himself, more fully human. Our humanness

matters as it is our picture – our paradigm - to paint.

Continued on next page...

17

Continued from previous page...

That got me to thinking about whether we can paint our

future –our paradigm – using his techniques, seeing

through his very human eyes, by looking back. If we

“unpack the baggage” of cultural expectations, stand-

ards and traditions which were conveyed by ADA and

inclusion, and make it more acceptable to be more fully

human, more fully ourselves, we truly can paint our

humanness and impact our communities. Ah, but for

us to do this will take courage, for our pictures reflect

truly who we are!

Unpacking the legislation, the current view through the

lens of ADA and inclusion, we can see it is limited. The United States Access Board says: “Among oth-

er things, the Americans with Disabilities Act (ADA) ensures access to the built environment for people

with disabilities.” ADA is more about prohibiting discrimination concerning the built environment than it

is about enabling humanness; we need to see that differently. ADA is but a small brush to use in paint-

ing the picture. It cannot make us more fully ourselves, but merely give us nondiscriminatory access to

the canvas. We have to look further...

The current view of “inclusion”--in and of itself--does not represent a defined legal requirement, alt-

hough it serves as an underpinning of, “legal notions of equality in the Individuals with Disabilities Edu-

cation Act (IDEA) and Section 504 regulations.” Inclusion is defined as: “The practice of engaging the

full participation of exceptional individuals or marginalized groups in educational, social, or civic activi-

ties.”

So, inclusion is little bit bigger brush to paint with,

addressing equality and the practice of engaging

participation. But is it big enough to paint our pic-

ture with? No, we have to look further…

Universal Design is the concept of designing all

products and the built environment to be aesthetic

and usable to the greatest extent possible by every-

one. This seems to be a bigger brush to use to

paint our picture of humanness. While we need ac-

cess and equality, usability to the greatest extent

possible looks like the best brush with which to

paint our canvas of humanness.

The canvas of humanness shows patterns blended

into our lives through policies, procedures and processes. These may be given clearer definition

through legal challenges, public opinion of people affected, and public input as new legislation. These

are all things we can influence, shape and blend to reflect our humanness. Rather than reflecting some

idealized version of what we should look like.

So here is where we may be able to help others see our pictures differently!

Continued on next page...

If we “unpack the baggage” of cultural

expectations, standards and traditions

which were conveyed by ADA and

inclusion, and make it more

acceptable to be more fully human,

more fully ourselves, we truly can

paint our humanness and impact our

communities.

18

Continued from previous page...

In asking how I can encourage myself and

others to see with different eyes, the fol-

lowing came to light; current views, mind-

sets and events are changing rapidly due to

technology and communications and they

color our world, but they are not our hu-

manness. Only we can paint that picture.

We must step up to the canvas. So in this

attempt to paint our picture, we can take

action.

Action 1: Prioritize awareness of policy

making efforts which affect your univer-

sal design, access, inclusion and you.

Submit YOUR picture of reality; your

picture of solutions and needed re-

sources. Tell your story of accessible

housing that is needed and resources that

are required, in your picture! This is where

we need to show others how to look differently at our true colors, our asymmetrical shapes of beauty,

our minds that think differently, our communications using visual languages, using bright colors of ad-

vocacy. They need to see us through different eyes. See us for who we are; then we can make an im-

pact. Pick up the brush.

Action 2: Educate ourselves on processes to comment and speak out where proposed policies

reduce or negatively affect universal design, access or inclusion. Policy makers may not know

the full impact of actions on us, on our picture. It is our responsibility to let them know. We cannot hide

in complacency and presume, someday, someone else will paint our picture… If you see it,

know it, experience it and can impact it: paint your own picture, tell your story, your view, advo-

cate and say something! Don’t hide your paradigm!

We paint our picture, our paradigm, as we work, live, and play. I encourage you to paint a big picture of

humanness. Our humanness, seen, results in a 3-D printing of prosthetic devices for children. Our hu-

manness experienced makes it business as usual for a theater showing captioning and audio descrip-

tion. Our humanness, felt, is jobs with livable wages, accommodations and acceptance in the work-

place. Paint your picture – your paradigm - where you are, advocate, submit public comments, talk

about how lovely your picture of humanness is, paint it clear, strong and bold and never ever put down

the brush. ADA, Inclusion, Universal Access are but brushes to paint with. Use them.

We paint our picture, our paradigm, as

we work, live, and play. I encourage

you to paint a big picture of

humanness. Our humanness, seen,

results in a 3-D printing of prosthetic

devices for children. Our humanness

experienced makes it business as usual

for a theater showing captioning and

audio description. Our humanness, felt,

is jobs with livable wages,

accommodations and acceptance in the

workplace.

Need support? BIAAZ facilitates several survivor

and caregiver support groups that meet monthly

throughout the Valley. Check out our Facebook

page at www.facebook.com/

BrainInjuryAllianceAZ for more information. Or,

ask to subscribe to our e-Blasts by emailing

info@BIAAZ.org.

19

20

Meet BIAAZ:

Events and Special Projects Manager

Dee Farrand

Dee Farrand, the Brain Injury Alliance of Arizona’s Events

and Special Projects Manager, sees her role at BIAAZ as

more than just a job. For her, it’s a way to advocate for her

community.

“I’m a survivor myself and giving back to my community

is important to me,” Dee said. “And I really like the BI-

AAZ’s commitment to survivors and families.”

Dee has been living with a brain injury since 2000, when

she was struck by a falling swamp cooler. She had just

graduated with a bachelor’s degree in social work the pre-

vious May and was a young single mother to her 9-year-old

son, but refused to allow her injury to determine the course

of her life. (Read more about Dee’s inspiring recovery here on page 13.)

Dee had to relearn how to read, cope with an identity crisis brought on by significant personality changes

that stemmed from her injury and a host of other physical challenges and issues, including migraines she

still gets today.

None of those hurdles stopped her from living the life she wanted, however. In spite of everything, Dee

went on to earn a Master’s Degree in Nonprofit Management. Although she’s only been with BIAAZ a few

months, she’s already played a major role in the success of last year’s professional conference and is now

turning her attention to this year’s Bowl for Brain Injury event.

Meanwhile, Dee’s 9-year-old boy has grown into a young man in the military, making “proud Army mom”

her favorite title.

Her personal experience with head injury makes Dee especially passionate about her work with BIAAZ and

she has some ideas about what she’d like to help the organization achieve.

For one thing, Dee wants more people to know about BIAAZ and its resources.

“I would like to see us well known in the community,” Dee said. “Right now it’s kind of a well-kept secret

and considering how many of our kids through sports, professional athletes, veterans and people just in eve-

ry day accidents end up with some kind of a brain injury, more people need to know we’re here.”

Dee lived in Tucson for 30 years before moving to Phoenix in 2011.

Her work at BIAAZ and private practice don’t leave Dee much in the way of free time, but when she does

have spare time, she enjoys visiting Tucson to see her family and spending time with her two pups, an

American bulldog mix and a Chihuahua Jack Russell.

Dee Farrand, Brain Injury Alliance of Arizo-na’s ne w Events and Special Projects Man-ager, with her son, John-Gabriel T. Causbie

21

Meet BIAAZ:

Operations manager Meg Bakke

For Meg Bakke, the Brain Injury Alliance of Arizona’s new operations manager, the opportunity to work for a nonprofit serving brain injury survivors, professionals and caregivers came at a particularly prescient time. Just prior to Meg joining BIAAZ, her nephew was in a car accident on Halloween and became a brain injury survivor. Though in a coma for several days, Meg said he amazingly he awoke with his cognition in-tact. “We just couldn’t believe it,” Meg said. Meg had already spent the previous year looking for nonprofit work but her nephew’s accident spurred her to look up local brain injury organi-zations and see if she could work for them. “It was one of those things where I knew this was the kind of work I needed to be doing,” Meg said. Meg and her family moved to Arizona in 2011 from outside the Washington, D.C. metro area. There Meg began her career as a development stewardship specialist for the Inova Fairfax Hospital for Children in Falls Church, Vir-ginia. She managed all donor interaction, special events, and finances related to giving. From there Meg went on to become an operations manager for the Food Allergy and Anaphylaxis Network, a na-tional, nonprofit education and advocacy organization that does everything from give input on food labels to train school staff on food handling and serving. “It was very rewarding,” Meg said. “It’s life-saving work.” After a vacation to Arizona in 2011, however, Meg and her husband decided it was time to pack up and head west for what she called “semi-retirement.” It’s going to be a busy retirement. As BIAAZ’s operations manager, Meg maintains and tracks both the member-ship and brain injury professional databases, explores new ways to connect with the community, works on large projects and events with other staff and manages the day-to-day office operations. “Meg joined our team in November and really hit the ground running,” said Carrie Collins-Fadell, BIAAZ’s exec-utive director. “She brings a great skill set that our members have already benefited from.” Meg enjoys the supportive nature of her role. “For me, it’s always been about how I can make the job easier for other people so they can do their job,” Meg said. And, Meg is grateful for the opportunity to do meaningful work for an important cause and community. “Working for a nonprofit always gives you the ability to know you’ve actually made a difference, you’ve done

something important,” Meg said. She is especially looking forward to meeting the brain injury survivors and caregivers BIAAZ serves and “letting

them know that there’s people here that care about them and are here to help them.” In her free time, Meg enjoys hiking and being outdoors. She admits she misses the woods and snow from back

East, but looks forward to exploring Arizona’s version when she heads to the northern parts of her new home state.

Meg Bakke, the Brain Injury Alliance

of Arizona’s new operations manager.

22

23

24

Mild Traumatic Brain Injuries:

The challenges of presenting a legal

claim

By Brenda Hamilton

Brenda Hamilton is a personal injury and wrongful death paralegal

with more than 35 years experience who works for Warnock,

MacKinlay & Carman in their Scottsdale office. Her interest in TBIs

was piqued when she had an immediate family member who sus-

tained a “mild TBI” and had to battle with worker’s compensation and

automobile insurers to establish the seriousness of injuries that

caused 100% disability. She works closely with the catastrophic inju-

ry team at WMC to assist families with TBI issues and is well-versed

in helping attorneys and insurers understand the seriousness and

long-term consequences of a mild TBI.

A significant issue with “mild” TBI legal claims is the difficulty in presenting the severity of the injury. Literally every symptom the survivor has can backfire and be used against them. Defense experts, attorneys and hired doc-tors are professionals at painting a picture to show there is no real, significant, lasting injury or impact, even when that is patently false. When there is a moderate or severe TBI, the severity can clearly be shown from numerous sources:

The MRIs or scans. Obvious symptoms, i.e., inability to speak, walk, etc. In-patient care records.

Contrast that to a Mild TBI (“MTBI”). Mild TBIs occur with much more frequency than severe injuries, and bring a whole separate set of issues in the legal arena. Many MTBI Survivors look outwardly “normal” in that they can walk and talk with no outward appearance of the severity of their injuries. The impact of their injury on their daily lives isn’t immediately apparent. There is no MRI or scan showing the presence of a brain bleed or shift or sheering injury. Their complaints are often diverse and difficult to quantify, describe or reproduce. Legit-imate symptoms often mimic those reported by someone who is malingering. (Malingering is fabricating or ex-aggerating the symptoms of a mental or physical disorder for “secondary gain,” such as financial compensation for an injury claim.)

Continued on next page...

THE GAVEL BRAIN INJURY SURVIVOR LEGAL ISSUES

25

Continued from previous page... When dealing with a MTBI, after treatment is completed, the survi-vor may appear in a routine, non-adversarial or non-threatening and comfortable scenario as completely normal. But when stress is intro-duced, the survivor’s TBI symptoms may revert to the severity or level of impairment experienced shortly after the injury. A survivor under stress in the legal context may have to testify on the stand in front of a judge or jury or in an administrative legal process, give a deposition, or have a Medical/Psychological Evaluation con-ducted. But those are exactly the kind of stressful situations in which a survivor may perform very poorly. Some examples of performance failures in stressful settings, and how those can be misinterpreted, include:

Poor historian or inadequate self-assessment; comes across as an intentional liar. A Survivor may mix up the sequence of events and appear to be lying when confronted with actual records, or simply get facts wrong. Sequencing is a key component of brain function that is often impaired after a MTBI. The survivor may have an unrealistic or unclear understanding of his past concussion history or the impact of earlier life sports or injuries or events on his current status, or be una-ware of the ordinary results of his behavior on his life. For example:

Testifying a particular treatment started two weeks after the injury, but the records reflect it was not until three months later. Even if the start date has no impact as to va-lidity of the injury; the lie creates a major issue.

Claiming no prior concussion, when the neuropsychologist report shows prior concussions

during high impact sports participation. When accused of prior concussions causing the current symptoms, the Survivor can become agitated and deny any prior concussions, which is contrary to his own doctor’s report concerning prior sports activities, and is actual-ly only an error in understanding of what constitutes a concussion.

Reporting no problems with anger or aggression, while employment records reflect the Sur-

vivor was terminated due to anger issues post-injury. This can be used by defense teams to show the survivor lost his job for reasons not related to the injury, but he wants to blame the injury for financial gain.

Blaming spouse or loved one for separation post-injury, and failing to comprehend or un-

derstand their significant post-injury personality and functionality changes. This may ap-pear to be an effort to hide or misconstrue their failures.

Anger at the questioner comes across as an attempt to hide information or as a reaction to being caught lying. When a lawyer or doctor is asking questions or pointing out errors in testimony or statements, the MTBI victim often becomes frustrated, and in typical survivor manner, express-es that frustration as uncontrolled anger.

The MTBI victim verbally berates the questioner, who is doing nothing more than asking him to look at accurate in-formation and explain why it does not match with what he said. The end result is that the jury sees an angry per-

Typical survivor challenges due to stress of litigation: Poor Historian/

Inadequate Self Evalua-tion: Interpreted as inten-tional lying.

Anger at Questioner:

Comes across as attempt to hide information or being caught lying.

Trying to Outsmart

Questioner: Appears con-descending or gives inac-curate answers.

Over-Analyzing Symp-

toms and Impact: Looks like trying to exaggerate symptoms.

26

son, giving inaccurate information, which appears to be an intentional lie or attempt to hide information, and being angry at being caught.

Trying to outsmart the questioner. This is particularly difficult for highly intelligent MTBI survivor. Some of the coping skills a survivor learns following an MTBI is to carefully analyzing questions to make sure they understand what is being asked, and answer the correct ques-tion. A simple question like, “What is your name?” can be difficult for the survivor if one has been married previously, divorced since the in-jury, or for any other reason had a name change. If there is a question with multiple parts, the MTBI victim may come across as condescend-ing or answer incorrectly.

Over-analyzing of symptoms and impact. After being misunder -stood for months or years about the symptoms of his MTBI, the survi-vor often feels compelled to over-explain in detail and provide analysis of his understanding of his own behavior, in a misguided attempt to help the defense team understand what he has experienced. Unfortu-nately, this often comes across as an effort to make up symptoms, re-sults, or impacts from seemingly minor issues, in a failed attempt to paint the big picture, instead of letting his attorney do that work.

With all this negative potential in presenting a MTBI claim, what’s to be done? It is critical to have a legal team who understands MTBIs, and who will protect the survivor from the machinations of the defense team. The survivor’s attorney can request a written instead of verbal deposition, or pre-review of deposition questions to overcome the stress (a hard-fought battle not always won and dependent upon doctors’ orders or restrictions). The lawyer can request a second person attend all medical/psychological evaluations with the survivor, to assist in communications and clarity (and also as a witness). The attorney ought to demand that all evaluations be rec-orded, at least audio if not video. The lawyer might in the opening statement to the jury, or pretrial statement judge:

Discuss the nature of the MTBI injury and expectations of failures that are likely to be seen during testimony of the victim, or as already documented by defense doctors.

Help the jury understand before they occur that any apparent “lies” are really

further evidence of the injury. Create pre-understanding that if the survivor does not seem likeable based

upon loss of temper and other mishaps during the trial, those issues are the result of the injury.

Develop consideration of the fact that the very injuries have created the neg-

ative aspects that the judge or jury, during the limited window of time in-volved in the trial, is going to observe in the survivor.

In summary, only through a realistic understanding of the overall issues relating to MTBI can an attorney effec-tively provide representation to a fair result, and overcome the unfair prejudices that develop from what is rela-tively common for a MTBI Survivor’s behavior.

If you have other legal areas relating to traumatic brain

injury you would like to see addressed in future issues,

please contact Brenda Hamilton at (602) 399-0659 or

email info@biaaz.org. Brenda is a paralegal for Wrnock,

Solutions in Opening State-ment or Pretrial Statement:

Discuss expected failures by sur-

vivor.

Understand lies are evidence of

injury/not intentional.

If victim is not Likeable, it is

result of the injury.

Create consideration of injuries

as cause of negative impression

they will have of victim.

27

President

Dr. Robert Djergaian

Banner Good Samaritan

Rehabilitation Institute

Past President

Rebecca Armendariz

Banner Health

Vice President

Tom Nielsen

Retired Executive

Secretary

Dr. Alex Hishaw

University of Arizona Medical

Center

Treasurer

Sean Badding

Everlasting Services

Directors

Kim Covington

Arizona Community Founda-

tion

Dr. Christina Kwasnica

Valley Physical Medicine & Re-

habilitation

Ray Norris, Esq.

Gallagher & Kennedy

Sharon Phillips

Freedom Manor

Matt Riegel

The Northern Trust

Company

Amanda Wigal-Schlosser

Brandables

Julie Rake

Physician Assistant

Edgar Martinez

Tucson Metro Chamber of

Commerce

Kay Wing

SWAN Rehab

Carrie Collins-Fadell

Executive Director

Board of Directors

28

THE BRAIN INJURY ALLIANCE OF ARIZONA

THANKS ITS SPONSORS FOR THEIR SUPPORT.

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