Call for Perspectives: Understanding Traumatic Brain Injury Recovery and Late Effects for Social Security Disability Evaluation

The National Academies of Sciences, Engineering, and Medicine Committee on Understanding Traumatic Brain Injury Recovery and Late Effects for Social Security Disability Evaluation is inviting people with traumatic brain injury (TBI), caregivers, and community partners to anonymously share their experiences and perspectives on living with TBI or caring for individuals with TBI. The committee is interested in hearing about lived experiences, especially with respect to care and management following TBI and long-term effects from TBI (i.e., effects lasting more than 12 months from the time of injury), and (if applicable) your experience applying for or supporting a survivor’s application for disability benefits for TBI through the Social Security Administration. Please visit the project website for more information about this study, including the Committee’s statement of task.

NOTE: In order for submissions to inform the study committee, the National Academies is required to include this material in a public access file. To safeguard your privacy, National Academies project staff will store your responses securely and summarize them with those of other respondents into themes and make the summary available to the committee and the public upon request. Anonymous quotes included in the summary may be reproduced in the final report.

Your name, email address, and other identifying information will NOT be made publicly available nor retained by the National Academies unless you specifically choose to participate further in the project. Any related metadata and geolocation information (ex. IP addresses) will not be collected or stored by the National Academies upon submission. Additionally, your input on the 8 topics asked about in the call for perspectives can be as brief as you want.

Please be aware that providing details about yourself could make you more identifiable, at least to people who know you. Unless you are comfortable having your identity linked to your answers, please avoid providing details such as names, dates, and places. We value all submissions and greatly appreciate the time taken to complete this call for perspectives and provide additional information for this study!

In accordance with the National Academies' privacy policy, your participation is voluntary. In accordance with the National Academies' obligations under the Federal Advisory Committee Act, Section 15, any comments you provide will become part of the public record of this consensus study. Upon completion of the study, all raw data not included in the public access file will be deleted within six months.

1. This question and questions 2 and 3 ask for some basic contextual (nonidentifying) information that will be of help to the Committee. Please provide any information you would like the Committee to have:

General description of respondent (example: TBI survivor, caregiver, advocate). You may list more than one category.

Other (please specify)

2. Which of the following U.S. Census statistical regions do you live in?

3. How would you describe the area in which you live?

4. Email Address: If we may contact you for further information, please provide your email address. (NOTE: Your email address will be shared with National Academies’ staff but not with the committee, and it will not be provided to the public) This question requires a valid email address.

5. Provide a brief description of your brain injury including age at and time since injury and severity of injury (e.g., mild/moderate/severe). For caregivers, please provide the following information about the person you are caring for.

How many brain injuries have you/the person experienced?

Briefly describe when, where, and how the diagnosis of brain injury was made.

Age at time of injury

Time since injury

If known, please describe the initial severity of the injury (commonly categorized as mild, moderate, or severe). We recognize these categories may not fully reflect long-term impact.

Other (please specify)

6. How would you describe your current day-to-day experience living as a survivor of TBI or caring for a survivor of TBI?

Discuss any frequent/persistent symptoms or problems with physical functioning; emotions or mood; cognition (memory, attention, thinking); or communication.

Provide examples of alternative or self-management strategies (e.g. mindfulness-based stress reduction, meditation, yoga) that you have used at home.

7. Please share your experiences with receiving different types of care and rehabilitation during your recovery and ongoing, if applicable. This may include rehabilitation services such as physical therapy, occupational therapy, speech therapy, or other supportive services you received while in the hospital or in the outpatient community setting.

If you were hospitalized following your injury, what types of rehabilitation services did you receive while in the hospital?

What types of rehabilitation services or care did you receive after leaving the hospital or are receiving currently in the community?

Describe any challenges you have faced accessing community-based resources or outpatient rehabilitation services following your injury.

8. Have you faced challenges working or attending school due to symptoms from your injury? Have you requested or received any workplace or school accommodations to allow you to work or attend school?

9. Imagine you are talking to a person who has recently had a brain injury or the family member of someone who has recently had a brain injury. What would you want them to know about dealing with the long-term, chronic issues caused by brain injury?

10. Is there anything else you wish was talked about or better understood by health care providers or the general public about living with the aftermath of a TBI?

11. If relevant, describe your experience applying for or supporting a survivor’s application for disability benefits for TBI through the Social Security Administration.

12. Please share any additional information or lived experience relevant to the statement of task that you would like the committee to consider.

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