MARY LEE FOUNDATION

Returning to the Community after Brain Injury

A Guide for Families & Caregivers
Acquired Brain Injury (ABI) is defined as an injury to the brain which is not hereditary, congenital or degenerative that has occurred after birth.
Traumatic Brain Injury (TBI) is defined as an insult to the brain, not of degenerative or congenital nature, caused by an external physical force that may produce a diminished or altered state of consciousness, which results in an impairment of cognitive abilities or physical functioning.
Following a brain injury and the initial phases of acute medical care, many survivors and families are left without a meaningful support system or viable resources.  All too often financial resources are exhausted and family members must make extreme sacrifices or settle for less than adequate housing and care to make ends meet.  An acquired or traumatic brain injury can result in a myriad of long-term physical and cognitive deficits requiring extended rehabilitation and other specialized services tailored to the individual and family.  Just as every human is a unique individual, each brain injury survivor is uniquely affected by their injury.   To best meet the needs of a person who sustained a brain injury one should not only determine how the injury has affected the survivor, but also determine the impact on each family member and other loved ones.
Advanced medical technology coupled with improved service delivery has led to an increase in the brain injury survival rate nationwide.  Unfortunately the funding ratio for brain injury services has not kept pace with the increased need for services resulting in significant gaps in the continuity of care being currently provided statewide.  We hope that the information provided below will help educate and assist the brain injury survivor, family member and caregiver as one navigates their way through an ever challenging journey.

1.   Get in touch with a local brain injury support group.
Brain injury support groups can be an invaluable resource for information on a wide variety of topics including:

  • respite care
  • social outlets
  • specialized medical care
  • vocational opportunities
  • community reintegration

Support groups assist survivors of brain injury and family members better adjust and cope with with life post injury. 
For a list of support groups and other resources in your community, contact:
The Office of Acquired Brain Injury
(512) 487-3415 
List of support groups in Texas

2.   Become aware of the long-term effects of brain injury.
Knowledge is power.  Knowing what to expect can often minimize the impact upon the family and assist with better preparation in soliciting appropriate care for a person sustaining a brain injury.  Click on the titles to download the following booklet which provide essential information for the survivor and loved ones during the recovery process:  
Understanding Brain Injury: A Guide for the Family 
Obtain a free copy by mail by writing to:
The Mayo Clinic
200 First Street SW
Rochester, MN 55905

3.   Take care of yourself.
Taking care of yourself is as important as caring for your loved one who survived a traumatic brain injury.  Respite care and periodic breaks are essential for maintaining your mental and physical health. 
If short term respite care is not available in your community, explore potential alternatives.  These may include:

  • Care provided by trustworthy and competent relatives, friends or close associates
  • If your city has a Mayor’s Committee for People with Disabilities, find out if they are involved with a respite care program.
  • Partnering with other families or networking with local religious groups to facilitate a Respite Care Program is another alternative.
  • Local Adult Day Care Centers may also be available for respite opportunities. 

Taking care of yourself includes learning to relax and participating in entertaining or relaxing events.  A healthy diet, regular exercise, a structured routine, and good sleep habits are crucial for both the brain injury survivor and caregiver.
Obtain a free copy of Caregiving: A Family Guide by writing to: 
Gray Panthers of Austin
3710 Cedar Street Box 15
Austin, TX 78705-1449
Phone: (512) 458-3738

Online resources for caregivers:
Taking Care of YOU: Self-Care for Family Caregivers
Caregiving 101: On Being a Caregiver
Coping with Behavior Problems after a Head Injury

4.   Carefully explore what resources are necessary to meet the long-term needs of your loved one.
Families often exert a considerable amount of time and energy locating an appropriate post-acute brain injury program, but fail to arrange appropriate aftercare.  Families should explore exactly what resources will be needed following a projected discharge and more importantly where and how they can be secured. The following are examples of issues that should be addressed:

  • Affordable and accessible housing
  • Provision for special medical needs
  • Medication monitoring
  • Sustainability of necessary therapies
  • Financial oversight needs
  • Securing transportation
  • Supervision needs
  • Maintaining employment
  • Maintaining sobriety
  • Maintaining daily living skills
  • Constructive use of free time

5.   Determine which medical doctors and therapists will be needed when returning to the community. 
If an individual is being treated by multiple doctors, it is essential that all information involving medical treatment, medical recommendations and prescribed medications be shared with each doctor in a timely manner. This includes the use of over the counter medications.  Each doctor should be informed whenever there are changes made involving one’s medical treatment or changes in medication. Encouraging a dialogue between each treating doctor is highly recommended and could prevent a severe complication from emerging.  A person should never start or stop taking a prescribed medication without first consulting with their doctor.

The following are doctors and specialists that may be part of your loved one’s aftercare team.
The Neurologist: 

Most people will routinely require follow-up by a Neurologist following a traumatic brain injury.  Once medically stable over sight by your neurologist will likely be gradually reduced.
The Neuropsychologist: 

  • The general rule of thumb is to have an updated Neuropsychological Evaluation conducted once every one to two years while an individual is involved in ongoing rehabilitation. Any Neuropsychological Evaluation over three years old may be deemed outdated by a medical professional.
  • The brain injury survivor and family members should be provided a thorough overview of the evaluation results. Loved ones should  advocate for any service or therapy recommended by the neuropsychologist.  

Cognitive Therapist: 

  • A cognitive therapist will focus primarily on improving one’s executive functioning skills and will help the patient to develop effective compensatory strategies.
  • Therapy goals may include improvement in the following areas:
    • attention span
    • judgment
    • problem solving skills
    • decision making skills
    • organizational skills
    • emotion regulation
    • social skills and initiation
    • time management skills
    • memory recall
    • awareness of deficits.
  • Areas of focus may very easily overlap with other treatment disciplines.  Treatment objectives should be documented utilizing observable, measurable terms.  Prior to initiation of services, each treatment objective should be explained to the survivor of a traumatic brain injury using clearly understood terms in order to promote full comprehension of the expected outcome.
  • Cognitive therapy is diverse and may promote the re-learning of a skill, modifying or adjusting a previous skill level, or learning compensatory strategies to help with one’s adjustment.

Outpatient Therapy: 

  • If speech therapy, physical therapy or occupational therapy is necessary, one should explore the various options provided within your community. 
  • Carefully review all fees and payment structures in advance and request this information be placed in writing. 
  • Try to obtain services from therapists experienced in working with traumatic brain injury. 
  • Therapy may also include exercises or training conducted in one’s home environment, often called indirect therapy. 
  • Home modifications may be recommended to promote independence or minimize levels of interference.  All home therapy and supportive devices should be periodically evaluated and revised if needed.


6.   Explore potential financial support available with your community and state.
Sources for funding health care services may include:

  • private insurance
  • VA Program
  • HHSC
  • Texas Worker’s Compensation
  • Texas Crime Victims Compensation Fund
  • Trust Funds
  • Texas Workforce Commission
  • Protective Services Division
  • Medicaid
  • Medicare
  • Private pay

​If these options are not available to you, you may qualify for indigent medical care from your local medical assistance program.  

  • Psychiatric services and medication therapy may be available at your local mental health community clinic for qualifying individuals.
  • Many cities in Texas have Independent Living Centers which provide resources, information, referral services and possible case management services to assist an individual in obtaining available community resources.
  • As the type of services and qualifying standards change, it is best to contact both your local and state resource offices to best determine existing program availability. 
    • Most program services in Texas are listed with HHSC:
      • Dial 2-1-1 and specify what type of resource you are seeking.

For a free Brain Injury Resource Guide which is routinely updated, contact:
Chip Howe
(512) 443-5777

7.   Administering medication

  • An individual’s ability to administer their own medication should be determined by the physician prescribing the medication.  Monitoring procedures should be provided if an individual is not capable of properly taking their medication. 
  • All medications should be stored at room temperature in a secured, locked location when not in use.
  • If an individual is treated multiple doctors, it is very important that the doctors develop a consistent dialogue with each other to review continuity of care and use of prescriptive medications.
  • Each doctor should be made aware of any over-the-counter (OTC) medication an individual is taking.
  • If a person takes multiple medicines a day or at different times throughout the day, it is highly recommended that these medications be set up in a weekly pill box storage container, which can be purchased at drugstores and supermarkets.  Select a pill box container that best meets your needs.
  • If a person forgets to take a medication, doubling the dose is never recommended.  Always consult with your doctor or pharmacists if a medication error has occurred.  If you or unable to reach your doctor or a pharmacist, then call your nearest hospital emergency room (ER) and ask for advice.
  • Some medications require routine blood tests.
  • Be aware of any potential side effect whenever a dose is changed or a new medication is started. Immediately report any side effects to your prescribing doctor or medical professional.  The most common adverse side effects include:
    • shaking or twitching
    • impaired speech or mobility
    • headaches
    • rash
    • increased heart-rate
    • excessive sweating
    • unusual or atypical behavior

8.   Maintaining Socialization
Loss of friends, isolation and depression are common struggles following a brain injury. The following options may help a survivor cultivate positive social experiences.

  • Encouraging the survivor to participate in a religious congregation of their choice may facilitate their community reintegration.
  • Developing an Activity Preference Checklist can assist with identifying and participating in activities of interest.
  • Adopting or caring for a pet may give survivors motivation and cultivate social interaction with other pet-owners.
  • Many Independent Living Centers offer educational and recreational opportunities.
  • Attending Brain Injury Support Groups facilitates bonding and new friendship between survivors.
  • If appropriate, explore part-time volunteer opportunities.
  • Try out fun and rewarding activities like gardening, star gazing, bird-watching, coin collecting, fossil hunting, walking or picking up trash in the neighborhood. 

9.   Transportation
Make a transportation plan that is safe and easy to follow.  Good planning leads to good outcomes.

  • Contact your local transportation authority for available specialized transportation resources.
  • If one elects to drive following a sustained brain injury, securing a Driving Evaluation first is highly recommended.  Many of the major rehabilitation hospitals offer this evaluation and frequently provide hands on training to assist in developing compensatory strategies for any lingering deficit.  In addition, many of these programs can assist in obtaining the funding needed for any recommended vehicle modification necessary to improve one’s driving capabilities.

10.   Vocational Opportunities

  • For assistance in securing employment, contact the Texas Workforce Commission.
  • Online job sites like Indeed can be helpful.
  • Consider starting with a volunteer job prior to seeking competitive employment to gain experience. When locating employment, attempt to find a job that most closely matches your interest and skill levels. 

 

For more information and resources, contact Chip Howe.

Chip Howe, M.A.
Mary Lee Foundation Rehabilitation Center
512-443-5777

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