Reflections on Brain Injury

I spent the last few days at the Nebraska Brain Injury Conference and, as usual, it renewed my passion for my work and reminded me that it is important that I continue to do the work I do.  I was talking about it with my son at lunch today and realized that although the work I have done in my life has not always been in the same field, it has all culminated in me being where I am today, where I am needed.

I started out a speech pathology major and graduated with a BS in education.  I went on to grad school, but never completed my Masters in Speech Path.  I got married and had my kids and they became the focus of my life.  I took the jobs that I could get that allowed me to make sure that my kids were being taken care of.  But it's all good.  Those jobs included management experience, accounting and budgeting, marketing, communication, fundraising, event planning, and networking.  My education in speech path, gave me an education in brain injury and special education.  All of thise makes sense now if the job I do as the Manager of Employment Services for individuals with Intellecutal and Developmental Disabilities and Brain Injuries.

I feel incredibly grateful to work one-on-one with the individuals that I do.  It has allowed me to gain special experience in helping individuals with brain injuries join or rejoin the workforce.  It is experience that not many people have.  

Attending the Brain Injury Conference also reminds me that life is unpredictable.  A brain injury can happen to anyone at anytime.  Many of my clients woke up one day, not expecting anything life changing to happen, but it did.  They experienced a brain injury that not only changed their life forever, but also changed the lives of all those that care for them.

One of the things that I learned while at the conference that I have to admit, was new information to me, was that the sooner  someone is able to return to work following a brain injury the better they tend to do cognitively.  Yet many people don't think they can return to work, or don't try to return to work until years later usually.  I have seen the effects that not working can have on these individuals.  Depression, drug abuse, alcoholism, and limited social interaction, are only a few of the problems that have resulted from having too much time on their hands.  

Being able to work changes peoples lives.  I know this because I have seen it.  It allows them to increase their financial stability, to have a purpose, to meet new people, and to increase their self esteem.  It's hard to believe that someone experiences a brain injury every 11 minutes in the united states, and that at least one person a day in the state of Nebraska experiences one.  So I will continue to do the work I do.  I am thinking a lot these days about how the brain injury program can be expanded and improved, so I am asking for the support of anyone who may read this blog.  If you have been touched by brain injury, I invite you to share your experiences with me, especially as it relates to employment.  Let's get to work!

Employment First

I have mentioned before that I am an "Employment First" advocate.  

I belong to the National Association of People Supporting EmploymentFirst (APSE) and I am also a member of the Nebraska APSE Board.  As a member of this organization, I believe that all Nebraskans should have equal opportunities to choose and maintain a good job, use their talents and skills, earn competitive wages, increase their self-support, and contribute to the economic prosperity of their communities.

Although President Obama recently signed the Workforce Innovation and Opportunity Act into law in July, I am aware that the issue of "Employment First" is still a polarizing issue.  About the WIOA, President Obama stated that the WIOA would "help workers, including workers with dsabilities, access employment, education, job-driven training, and support services that give them the chance to advance their careers and secuire the good jobs of the future."

Some of the change we will see in advancing "Employment First" locally will be a change in the way that Vocational Rehabilitation provides services to transition students who are making the transition from school to adult life, which includes employment.  This will also include efforts to limit the use of sub-minimum wage for individuals with disabilities and encourage those adults with disabilities who want to work, to find community work at minimum wage or above, with wages and benefits similar to those without disabilities doing the same work.  This means that "competitive integrated employment" will be the optimal outcome.

The reasons that I am passionate about the issue of "Employment First" are many.   Among the most important are that "Employment First" creates opportunities for all people to advance in their careers.  Besides increasing financial security, it allows individuals to develop a sense of accomplishment, to experience an increase in self-worth, and to create relationships with others who do not have disabilities.  The community benefits by experiencing a more diverse workforce and a decrease of dependency on public funding.  Finally, employers benefit from value that individuals with disabilities can provide their business including access to dependable and qualified individuals.

I have personally seen how community employment has changed the lives of individuals with disabilities by providing them an opportunities to enrich their lives. Let me share a brief story of "Joe" and how his life was impacted by employment and how he impacted the lives of others through his work.  

Joe was an athlete, a boxer, who suffered from brain injury due to the cumulative affect of being hit in the head and even being knocked out on numerous occasions over the years during his career in boxing.  Now in his 40s, Joe was struggling with concentration and had much difficulty maintaining employment, but greatly desired to be able to financially support his family.  Although no longer involved in boxing, Joe enjoyed being physically fit, and longed to find a job where he could combine this passion with work. Through his involvement in a supported employment program, Joe evenutually found a job where he cleaned at fitness club five days a week.  Joe  didn't have a car, but used his bike to get to work and quickly developed a connection with his coworkers and the clientele of the fitness club.  After a few months on the job, Joe left work one day to find that his bike had been stolen.  His manager offered to give him a ride home and helped him to get to and from work since he no longer had transportation.  After a few weeks, Joe arrived at work one day to find his coworkers with a surprise gift for Joe - a brand new bike!  Joe's manager and coworkers valued Joe's contribution to the workplace so much that they got together to provide the assistance that Joe needed to continue working there.

Joe's story is one that demonstrates how everyone won when Joe went to work at the fitness club.  Joe got to have a job he loved and was able to get paid a wage that helped him provide for his family.  The clientele at the fitness club enjoyed interacting with Joe, who was always friendly and interested in helping others.  The fitness club staff benefitted by having a great employee and team player who became a friend to his coworkers.

For more information on how you can help advance the mission of "Employment First" please visit www.apse.org or the "Nebraska APSE" page on Facebook.  Let's work together to create opportunities for individuals with disabilities in the workplace.  Let's get to work!

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!

When the Going Gets Tough

There are days when things get tough.  It happens to us all.  We get bogged down with all the demands placed upon us and we aren't always open to hearing what we need to do better.  But it is those that hang with us during this tough times that truly make the difference.  They are the ones that see something inside us that we may not see in ourselves.  Without them encouraging us, and pushing us at times, to do our best, we may not ever learn what our best can be.

A job coach that works for the agency recently experienced some pushback from one of the individuals she supports.  When she arrived at the worksite, the individual was nowhere to be found.  She looked all over for him and found him about ready to sit down to enjoy a drink.  The problem was that he didn't get a break at work because his shift is only a few hours long.  When she approached him about what he was doing, he said, "I"ve finished all my work and I'm taking a break."

When the job coach tried to encourage him to go back to work, and told him that she would help him find a manager to ask what else he could work on, he told her, "You're selfish!"  She told him that what she was trying to do was help him to keep his job. After a few failed attempts of negotiating with him, he told the job coach, "You're fired!"  But the job coach did not give up.  She let him have a little space and eventually he finished working his shift and was able to come back to work the next day.

It just so happened that later that day, the individual's team meeting was taking place and the job coach showed up at the meeting, along with the other members of the individual's team.  After talking everything through, by the end of the meeting, the individual told his job coach, "You're rehired," and the next day they worked together, all was back to normal.

What would have happened if the job coach would have given up on the worker she supported?  He might not have learned that he was capable of doing more.  I have always believed that people will rise to the expectation.  They may not always like the idea of having to do more, but they do it because the expectation is there that they achieve.  These are the moments that test us, but that make us a little better than we were the day before.  They may even make us a little better than we thought we could be.

This is the work that job coaches do everyday.  They encourage, support, and hold the bar a little higher.  They do this job quietly and without a lot of fanfare, but they come to work each day and do this.  Somedays the job coach may only need to encourage an individual to continue doing a good job.  Somedays they may need to discuss with the individual something that they are doing and don't understand why it is problematic.  On the most challenging days, they may need to help keep the individual from losing their job.  They are great problem solvers and most of the time, others in the work place don't even know they are there.  They focus on strengths.  The end goal is always to make the individual as independent as possible at work.

Sometimes I think all of us could use a job coach now and then.

When Black and White Become Grey

Most of us don't have to think about how we relate to others in the workplace.  It is something that we learn throughout our lifetime.  Some of us are definitely better at it than others, but we get along to the best of our ability.

It is the social part of work that is often the most difficult for individuals with developmental disabilities to navigate.  This is where the black and white turn to grey,  The individuals working in an integrated workplace see others joking with each other, discussing things that are happening outside of work, and maybe even sometimes making plans to get together after their work shift is over.  It is normal for them to want to be like everyone else.  This is the ultimate goal of inclusion, isn't it?  But sometimes this is easier said than done.

Because individuals with disabilities sometimes don't see themselves as any different from others, it is difficult to understand why someone they work with may have a different reaction to them than they may have to someone else they work with.  Sometimes this is exacerbated by well-meaning co-workers who think of an individual with a disability as "cute" or "child-like" and don't consider them as the adult that they really are.  Most people are afraid of hurting someone's feelings and may let behavior that would be unwelcomed by any other co-worker continue because they fear the reaction they may recieve, or worse yet, feel that it may be doing or saying something discriminatory.

I recently attended a seminar entitled "Adulthood is Not an IQ, it is an Age."  Sometimes those who work in the field of developmental disabilities can even be consfused or misguided at times.  The bottom line is that when you give an adult individual with a development disability the option of being treated like an adult or like a child, they will most often choose being treated like an adult, because that is what they are and they intrinsically know it.

A young adult man who is working in a restaurant setting has seen others at work talk about meeting up outside of work for a drink or other social activity.  Since he is in his mid-20s, this is something that is age approprate for he and his peers.  The problem came when he tried to ask for the phone number of a femaie co-worker who was not interested in any contact with the young man outside of work.  This situation became very difficult because the young man didn't understand why the female coworker didn't want to exchange numbers, and the female coworker was hesitant about talking with the young man in the same manner that she would with any other young man that she wasn't interested in.  And thus, they found themselves in the grey area of social interaction in the workplace that individuals with developmental disabilities sometimes experience.

In my experience, it is best to tread lightly in the grey area and keep things as black and white as possible.  For instance, the job coach might suggest that an individual ask the manager if there is a policy in place regarding asking co-workers for personal information while at work.  If there is no policy, the job coach might suggest that if the individual wants to ask for a coworkers phone number that they only do so one time.  If the coworker doesn't want to share it, than that should be the end of the matter.  Putting concrete, black and white, parameters on things can sometimes make these situations a little easier. 

The hardest situations for job coaches to deal with are when an individual observes another coworker doing something that is clearly against policy, but they do not get in trouble for it.  It is very hard to explain this, but these are the times when it is best to just let a supervisor clarify the situation.  There have been numerous times that I have heard from managers, "It would be nice if some of my other employees had a job coach sometimes."

One of the biggest challenges in community employment is that we have no control over the other people that are a part of the workplace environment.  When looking for a job, the job development staff do their best to find a fit in a supportive environment.  Don't we all want to find a work environment where are strenghts are valued and we can rely on our coworkers to help us when we need it?  

Job coaches help to foster supports in the work place. They educate.  They suggest ways to better communicate with the individuals that we support.  They help these individuals through trying situations.  Although they do all these things, the bottom line is that sometimes there is grey involved in the world of work and our job is to help the individuals's we support decipher how to best deal with it.  After all, learning how to deal with the grey areas of life is part of being an adult.