Living with TBI: How to Find Support and Resources within the Community

Each year 1.5 million people sustain a Traumatic Brain Injury (TBI) and despite this staggering prevalence, TBI is often referred to as a ‘silent epidemic’ in the world of healthcare. Even though TBI contributes to a third of all injury-related deaths, 75% of TBIs that occur annually are considered mild – meaning that injuries may not be readily obvious, hence ‘silent’

TBI can result from contact injuries to the head that can be open or closed, or may occur from an inertial injury – in which the brain moves around in the skull. Some of the most common causes of TBI include falls, MVAs, violence, and sport injuries. After sustaining this type of injury, individuals can find themselves experiencing challenges that are brought upon by persistent symptoms. These challenges can impact reintegration into the community. How to find resources for those post TBI is a question we get a lot!

Check out this guide for therapeutic intervention based on the Rancho Scale!

As OTs, PTs, and SLPs we are equipped to address physical, cognitive, and behavioral disruptions during rehab in a hospital setting – but our role should not end there! We should be familiar with and adopt community resources for those living with TBI into our POC to fully and holistically serve our clients.

Let’s explore some of these TBI resources & how to find them.

1. Support groups:

 Support groups are instrumental to the recovery process for our patients with a TBI and these resources likely exist in YOUR area! Being surrounded by peers who are/have experienced the same challenges will foster a community feel and allow patients to share personal stories to connect with one another. This connection can combat social isolation, which is often reported by both patients and caregivers of those with TBI. 

Introducing the idea of a support group might not be your patients favorite idea, but educating them on the psychosocial benefits and providing them with plentiful options might be just the encouragement they need to take this step in their recovery journey. 

  • Providing them with both virtual and in-person options will grant them the autonomy to choose a support group they feel comfortable with – REMEMBER group conversations will involve vulnerability so patient comfort is a MUST
  • If support groups are not your patient’s jam, there are resources that offer both forums, chat spaces, and other formats that might be preferred
  • Facebook groups (and other social medias) are another way to create a sense of community for these patients and their family. Use with CAUTION when sharing personal information on these public pages.

Therapists and rehab personnel might have to be the heroes that connect patients and their families to local transportation services that can support the reintegration into the community. Add these resources to your toolkit to be better prepared if transportation is a burden for your patient and their families. 

There are online services through the Modivcare that can provide patients with non-emergency medical transportation in order to make access more readily available. Use this link to create an account and an application to set up scheduled transportation in your local area.

Here is a great resource to find both in person and virtual support groups for individuals with TBI. Use this link Scroll to your state and ‘shop’ around for local groups using the links provided.

Check out this website that presents state-by-state options for support groups both virtual and in person that offers groups for caregivers, people with TBI, as well as other groups including male/female only.

Caregivers are a population we as therapists MUST consider when providing holistic care after a brain injury. Caring for individuals with a TBI can leave families feeling lost, stressed, and confused. Here is a great source to provide to caregivers with tips discussing: caregivers mental health, assistive technology, and managing challenging behaviors.

Here is another great source to provide to families that demonstrates how to find nonprofit, private, and public programs/services by state. This tool will assist caregivers in finding specific services local to them and their loved one.

*Note: this site is not specific to brain injury but is a great resource to locating specific organizations that can help!

2. Vocational Aspects

Employment rate for individuals with a TBI is reported to be only 10-40%. Community reintegration might involve return to work or seeking new employment opportunities after a brian injury. As a member of the rehab team, it is important we are prepared to provide information relating to work and financial literacy to ease the transition back into the community and ultimately everyday life! It is important to remember that work can often times provide patients with a sense of purpose and fulfillment – clinicians are well placed to have a working knowledge of community resources to present to patients with TBI in order to meet their vocational needs. Here are some virtual resources you can offer up to your patients to help them find employment and help them understand their options for financial stability. 

  • This resource is chalked full of great information that breaks down insurance (car, health, etc.), loss of wages/compensation, government programs etc. for this population. Developing financial literacy can provide patients and their families a firm foundation for financial stability.
  • Need tips to ‘stay afloat’ after a TBI? This source provides 10 FANTASTIC tips for managing finances discussing topics such as: budgeting/saving strategies, applying for disability, and more! These ideas can be incorporated into your POC to maximize independence in IADLs and empower families to feel in control of their finances.
  • Another wonderful tool that helps individuals with disabilities locate jobs or perhaps jumpstart a new career. This inclusive platform will look at the patient’s skills/experience and collaborate with them to find work- use this link, click ‘find jobs’, and create an account to get started!

3. Transportation 

Transportation is an incredibly important part of community reintegration and finding RELIABLE and SAFE transportation services can be challenging. These patients will often have regular doctor appointments, therapy sessions, as well as everyday social events that will need to attend. Special considerations for finding transportation include: 

  • Cost – can the family afford to pay for these services and if not how can they receive financial support? Check out this source that details the different financial supports available disabled individuals
  • Equipment necessary- if the patient has physical limitations that require lifts, space for wheelchair transport, and other supportive devices for car transfers.
  • Training of personnel- locating companies with necessary training to perform these transfers and support patient safety is a MUST.

There are online services through the Modivcare that can provide patients with non-emergency medical transportation in order to make access more readily available. Use this link to create an account and an application to set up scheduled transportation in your local area.

Nowadays, companies like Uber and Lyft are popular among anyone and everyone getting from place-to-place conveniently and reliably. Rehab teams can educate patients and their families on how to use these apps to promote independence in locating and managing transportation within the community. 

4. Additional Services: Addiction & Substance Abuse 

After sustaining a TBI, patients are 10-20% more likely to engage in new substance misuse behaviors and if they were misusing prior to the injury they are even MORE at risk for continuing this behavior post injury. We can’t forget the risk of developing addictions to opioids due to pain experienced after injury as well. Using drugs and/or alcohol can complicate the process of community reintegration by promoting self-isolation, unhealthy coping mechanisms, and difficulty establishing a routine. If you suspect your client is misusing drugs or alcohol, these resources can help guide conversations with patients/families as well as give them the tools to overcoming these challenges. 

  • Here is your GO TO resource for providing information about substance-abuse after a brain injury! There are fact sheets, treatment programs, online trainings for caregivers, and other resources compiled in this Resource Toolkit that rehab teams can print and distribute to families. 
  • There are plentiful facilities that offer inpatient addiction services as well as phone consultations to devise a plan centered around the patient’s needs – here’s an example!
  • Many of these resources consider the impact of mental health on the development of substance-abuse and incorporate addressing the link between the two. Here is another nationwide service that can link patients to local centers to provide treatment!

Ultimately, we want readers to recognize that there are existing services and resources to assist with returning to life post TBI. As practitioners, it is important to be prepared and become familiar with local and nationwide services that can support community reintegration. We encourage you to create a list of supportive services within your area and create handouts outlining these services to provide your clients with the tools to be successful after they leave the hospital and return to the important things in life.

Continue adding to your knowledge base regarding brain injury by earning your CBIS, use this link to learn more and register.

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