Working Toward More Supports For Individuals with Brain Injury

As I am writing this blog, I have also been working on putting together a proposal for a grant that would allow Career Solutions at the Ollie Webb Center to start a new support group for individuals with brain injuries that has a focus on employment issues.  At this time in our state, there is a lot of support from medical and rehabilitation facilities in the time that directly follows a brain injury.  Yet, when individuals who are a few, or several, years post-injury and are trying to make sense of their new life with a brain injury, the supports are much fewer.

I wrote last week that I am lucky to be involved with a grant from Nebraska Vocational Rehabilitation that provides supported employment services for individuals with brain injury.  However, these supports are time-limited and once the funding runs out, individuals with brain injuries may find themselves again in a situation where they are struggling and not sure where to turn.

Finding and maintaining employment following a brain injury is a big part of re-entering a new normal.  Having a job means an opportunity to make connections with others.  It allows an individual to have a sense of purpose and fulfillment which can reduce or eliminate depression that some individuals deal with following a brain injury.

The purpose of this support group is to allow individuals a place where they can have support for wherever they are at in the journey toward employment.  It also allows individuals the opportunity to learn from one another and to support one another from a sense of understanding that those without brain injury may have difficultly with no matter how supportive they want to be.

A statewide Nebraska TBI Needs and Resources Assessment Survey conducted in 2010 highlights the health challenges and barriers to services and support for individuals who have experienced traumatic brain injuries. 

Those who responded to the survey reported significant adverse changes to their lives resulting from a brain injury, most citing changes to their physical health, emotional well-being and ability to earn an income. They also reported experiencing barriers that prevented or limited access to needed services and supports, such as a lack of financial resources, geographic and transportation issues and limited awareness of brain injury among professionals.

Among the most important needs identified were cognitive training, counseling and behavioral support to address problems that occur daily as a result of an injury.  These problems affect the individual who experienced a brain injury as well as their families.

The survey revealed that in Nebraska: every day, at least one person dies from a traumatic

brain injury (TBI); three people are hospitalized; and over 24 people a day visit the

emergency department because of TBI. 

More than 300,000 people have suffered a brain injury including concussions and more than 36,527 individuals live with a disability caused by a traumatic brain injury.

The monetary cost associated with TBIs in Nebraska was over $413,000,000 in 2009. This estimate includes both fatal and nonfatal injuries, medical costs and productivity losses.

It is estimated that the lifetime costs per individual with a brain injury are:

Mild brain injury - $85,000

Moderate brain injury - $941,000

Severe brain injury - $3 million

In the last five years, there has been a steady increase in emergency department visits, hospitalizations and deaths caused by a traumatic brain injury.  Emergency visits for brain injury in Nebraska are higher than the national average.

The most frequent cause of a TBI is a fall, especially in those under one year old and over 65. Males, 25-44, have the highest incident of brain injury due to being struck in the head, struck against something or involvement in a car crash.

Lives are changed by a traumatic brain injury, most notably physical health, emotional well-being and loss of income. The entire family is affected.

(2010 Needs and Resources Assessment, Schmeeckle Research Inc. This project was supported in whole by TBI Implementation Partnership Grant #H21MC06758 from the U.S. Department of Health and Human Services (HHS), Health Resources and Services Administration (HRSA), Maternal and Child Health Bureau (MCHB).

Our plan is to get this support group running in November 2014.  It will take support from a lot of people. Namely, it will require us to provide a group that is worthwhile and productive for those involved.  If you know of someone who has experienced a brain injury. I am currently seeking input from potential members of the group.  The group will grow to have its own identity and I hope that it will also include family members and employers who are wanting to support the cause also.

This is an exciting, new opportunity and I look forward to this chance to provide support, and to learn and grow from the experiences of others.  Let's get to work!

Parental Advocacy and Problem Solving

The reason I started this blog was because in my everyday work, I often come across stories that need to be told.  That happened to me this week when I attended a meeting for a consumer that we support at a job in a cafeteria.

The individual that receives job coaching support at work has been doing very well.  At her meeting, the team was discussing new goals that she could work on for the coming year when her mother shared with everyone the journey that led to where she is at now.  She shared that at one point her daughter was working in a sheltered workshop where she was earning about $20 a week. She was encouraged to try another workshop setting and was dismayed when her daughter brought home a check for a little over $2.00 for her week of work.  She decided to take her daughter out of this place and was told, "It's better than having her sit at home."  The mother said that she disagreed and that her daughter would sit at home until a better placement was found.

The mother searched for another service provider that she felt was more in line with her daughter's goals and was told that her daughter may qualify for a job in a cafeteria setting, but that speed would be a factor.  So what did this mother do to support her daughter's search for a more suitable job?  She went to a thrift store and bought all the silverware she could find.  She brought it home and poured it all out on the kitchen table and told her daughter, "We need to work on sorting this as quickly as you can," and they got to work.

Not only was this mother an advocate for her daughter because she knew that she was capable of a job that would allow her to earn more, but she took the extra steps to help her daughter build the skills that were required to get the job.  I thought this was one of the most awesome examples of parental advocacy that I had ever heard of!  Today, her daughter works in a cafeteria setting five days a week, earning a wage that is well above minimum wage.  With the money she earns, this individual enjoys the benefit of being able to shop through catalogs and pick out clothes that she is able to purchase with her income.

I can't overstate the importance of advocacy in helping individuals with disabilities achieve their employment goals.  I realize that community employment for many individuals with disabilities takes commitment.  Often it is not only the commitment of the individual, but of their family, and their team.  It takes people who are willing to face problems head on and come up with solutions that will lead to a more independent and fulfilling life.

It's the kind of problem solving we all do when we have a goal that takes some effort to achieve.  And it is my experience that the goals that we work toward, the goals that do not come easy, that are usually the most gratifying.  Let's get to work!

If you are an individual with a disability and want to increase your own self-advocacy skills, ask for help.  The Ollie Webb Center can assist you with finding the resources you need to increase your ability in speaking up for yourself and expressing your wants and needs to get the most out of your life.  Contact them at (402) 346-5220.

Lessons I've Learned from Brain Injury

Although our Employment Services department primarily works with individual with developmental disabilities, we also have a supportive employment program for individuals with brain injuries.  I personally work on helping these individuals join or re-enter in the work force.  

Spending the time that I do with these individuals has taught me many things.  The first and most important thing is that no matter what we have been through in life, everyone has goals and dreams for what they want there life to be.  A person with a brain injury is a person first.  Very often, I see the the incredible determination and resilience that the individuals I work with display.  No matter what they have been through, they don't give up.  By no means am I saying this is easy.  Coming to terms with how a brain injury has influenced your life and the lives of those around you is not something that happens quickly.  It is a process that requires great strength of character and can put even the closest of families to the test.

Another important thing I have learned is that brain injury does not descriminate.  It can happen to any one at any time without notice.  The causes of brain injury are as veried as the individuals themselves.  Car accidents, brain cancer, stroke, falls, drug overdose, encephalitis, illness, acts of violence, work accidents, etc.  The list goes on and on.  The one thing that every one with a brain injury has in common is that they never planned on having a brain injuy.  What this means is that is very likely that at some point in life, each of us will know someone with a brain injury.  In the state of Nebraska alone, there are over 40,000 individuals with brain injury.  Many individuals and their families may think that once they experience a brain injury, returning to work may not be possible.  Not only is it possible, but I have personally worked with individuals who are not only working, but thriving at work in spite of their brain injury.  

From my experiences, I have learned that no two brain injuries as the same.  Sometimes people in the field say that if you've seen one brain injury, you've seen one brain injury.  This means that although individuals with brain injuries can experience some common effects, they can very greatly from person to person.  Just because one person has progressed to a certain level of fuctioning, doesn't mean that someone else with a similar brain injury experience will be at the same level.  We must accept each person for who they are as an individual and where they are at in their own pesonal journey.

In working with individuals with brain injury, I have learned that we can look to each new day as a new opportunity.  I have heard from individuals that I work with that they are just focussing on taking things day by day.  For those of us who work with or care for individual with brain injury it is important that we do not get caught up in feeling that progress is happening too slow.  We must look forward to each day as a new opportunity and try to put the past behind us.  Individuals with memory problems may not even remember what happened yesterday, and so we need to make sure we are letting go of what may have happened then and focus on where we are now.  This is probably the hardest thing to do and it takes great patience and understanding.  

Finally, the most exciting part of working with individuals with brain injury is seeing the mind-boggling complexity of the human brain.  It was once widely believed that the brain's capacity for recovery was limited to a certain period of time.  We now know that there isn't really a time limit on when relearning can occur.  What matters most is that we continually get out of our comfort zone and challenge and stretch our brains to their limit. 

In future blog posts, I hope to share the stories of some of the individuals with brain injury that I have worked with.  Even though I feel that I have learned a lot from the individuals I work with, I know that I have much more to learn and share.  Let's get to work!