Texas Brain Injury Conference- Part I: Achievement, advocacy and awareness

  By SELENA SEABROOKS The Dallas Examiner   Brain Injury Awareness Month is recognized each March by the Centers for Disease Control and Prevention as an opportunity to bring attention to the prevention of traumatic [...] The post Texas Brain Injury Conference- Part I: Achievement, advocacy and awareness appeared first on Dallas Examiner.

Texas Brain Injury Conference- Part I:  Achievement, advocacy and awareness

 

By SELENA SEABROOKS

The Dallas Examiner

 

Brain Injury Awareness Month is recognized each March by the Centers for Disease Control and Prevention as an opportunity to bring attention to the prevention of traumatic brain injury and to promote strategies to improve the quality of life for individuals living with a traumatic brain injury and their families.

This year, the Texas Health and Human Services Commission hosted a virtual webinar series, March 25 and March 26. The purpose of the webinar was to celebrate the achievement of individuals living with a brain injury and providing awareness and education about brain injuries and treatment options.

Day one was led and facilitated by Jay Smith, the project manager. After a brief introduction, he introduced Ron Lucey, executive director of the Governor’s Committee on People with Disabilities.

Lucey provided information on how his committee has interacted with Texans that have disabilities and members of the brain injury community. The committee’s mission is to work to further opportunities for persons with disabilities to enjoy full and equal access to lives of independence, productivity and self-determination.

Lucey offered an overview of two brain injury programs provided by the HHSC: Comprehensive Rehabilitation Services Program and the Office of Acquired Brain Injury. The CRS program provides services and support to individuals that have experienced a traumatic brain injury and/or traumatic spinal cord injury. The OABI focuses on all acquired brain injuries, both traumatic and non-traumatic, and connects individuals to resources and services while raising awareness to prevent brain injuries through internal and external collaborations.

Lucey noted that the most common cause of brain injuries is a common fall, which makes up approximately 47.9% of all brain injuries. He discussed Twitter’s brain injury awareness campaign – #morethanmybraininjury – which aims to increase the understanding of brain injuries as a chronic condition, help reduce the stigma associated with having a brain injury, showcase the diversity of the brain injury community and educate policymakers to improve care and support for individuals with a brain injury and their families.

Lucey turned the webinar over to Smith who introduced several state and national experts that discussed topics that included health disparities and racial equity for brain injury treatment, brain injuries related to strokes and cardiovascular disease, and the emotional needs of brain injury survivors.

Smith introduced Suzanne Hildebrand, stroke patient caregiver and advocate, and Ron M. Stewart, chair of surgery at University of Texas Health Science Center at San Antonio, M.D. They discussed several topics that included the importance of advocacy for patients with a traumatic brain injury and stroke, the six principles of trauma-informed care, needed support for patients, family and health care professionals, the need for patient advocacy, lessons from emergency health care system development and opportunities for others to partner and get involved in patient advocacy.

Hildebrand shared her personal story of her husband, Ray, who suffered a stroke 13 years ago.  She stated that her husband was admitted to the hospital 60 times over 27 months. He died in July of 2010. She indicated that, as a result of her husband’s death, she continued to work to make things better for stroke patients.

“Every stroke patient must have an advocate,” she said.

Dr. Steward emphasized that “we do not have unlimited time.”

“The time is now.”  he continued, “We must work together to achieve the greater goal,” doing the right thing for the patient.

Steward talked about the importance of advocacy and encouraged people to participate in the care of the patient and to be professional.

“The needs of the patient come before my own,” he stated.

Miso Kwak, project coordinator for the National Center on Advancing Person-Centered Practices and Systems, and Eric Washington, traumatic brain injury survivor and advocate, discussed racial disparities among individuals with a brain injury, the importance of racial equity in person-centered support, racial disparities on recognition and treatment of brain injuries and self-advocacy. Kwak shared data from several studies, which revealed that Blacks have higher incidences of traumatic brain injury and that people of color are less likely to receive follow-up care or treatment. On the other hand, Whites are more likely to receive the much-needed additional care, post-hospitalization.

Washington shared his personal story and stated that he was diagnosed with cancer – sarcoma – in 2019, which resulted in the removal of most of his thigh muscle. Washington explained that the medical team later found lesions on his spine and other bones throughout his body. He continued by discussing the difficulties he faced getting the appropriate treatment as a low-income individual on Medicaid. He stated that after 7 months of being “ping pong balled around,” he drove to an emergency room where he begged for a stay.  After days at the hospital, he was diagnosed with stage 3 multiple myeloma and given 6 months to live. He continued to face many difficulties to get the medication and treatment needed to treat his condition.  Washington stated that following these events and the passing of his mother, he was “forced into self-advocacy.”

“If we actually came together and did what we’re supposed to do and just care, I think the gap would naturally close,” he said.

Representatives from the TWC Vocational Rehabilitation Services discussed services offered by its agency to those with disabilities. The program is meant to assist individuals with disabilities to prepare for, enter, engage in or advance in competitive employment. The program also assists businesses and employers in recruiting, retaining and accommodating employees with disabilities. Some of the services offered include counseling and guidance, employment assistance, on-job training, vocational training, physical and mental restoration, and providing technological aids and devices. They noted that additional resources and services could be located at https://www.twc.state.tx.us.

Keisha Rowe, the director of office of independent services, closed out the first day of the webinar series by reflecting on the day’s presenters and presentations. She provided a quote stated by Steward earlier in the day, “Good work for the love of good work must be our model,” and spoke to the Committee’s commitment to continuously recognize and address disparities in our systems, advocate for continued care and support for those impacted by strokes, and push for meaningful employment opportunities for individuals with a brain injury.

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