Steve Morse has been with the ALS Association of Texas for nine years, serving in various capacities. Read his story about how he got involved, the impact of his work in his life, and his vision for the ALS community in Texas.
I went to school to study psychology and always thought I would be a psychologist. But when I finished my bachelor’s degree, I was ready to be done with school for the time being. I went to work for a brain injury rehab clinic and helped people who had had traumatic brain injuries from strokes, car accidents, or other head trauma. It was the first job that I had where I could apply what I learned in school. After that, I went into the mental health field working for a company that cared for people with bipolar disorder and schizophrenia. Our goal was to keep them out of the psychiatric hospital – to teach them about medication management, how to live in a community with other people, and how to manage their mental health issues.
During my time working with the mental health company, my administrator’s father was diagnosed with ALS. Her family had the genetic type of ALS and had already lost three family members to the disease. Her father was the fourth to be diagnosed. She resigned from her job to take care of her dad, and later, she became a member of the board of representatives for the ALS Association South Texas Chapter.
In November 2007, I joined the ALS Association as a result of my administrator’s involvement with the local chapter. I didn’t know about ALS, but I was ready for another opportunity, a different opportunity. I came on board and quickly learned what ALS is, and I was pretty shocked.
I first started as a Patient Services Coordinator, working specifically with families and meeting their needs – providing equipment, educating them about ALS, answering questions about ALS, and providing resources. As our department started to grow, the need for a leadership position became evident, so a director’s position was created, and I became the Patient Services Director for the Chapter.
As the director, I still spent about 80 percent of my time working with families, but I’d also begun directing our patient services team and managing our programs and services provided to people with ALS. In 2012, three Chapters here in Texas merged to become the Texas Chapter, and more people were added to our patient services team, which was then renamed Care Services.
One of the things I enjoy most about my job is going into a family’s home to meet with them for the first time, spending time with them, answering questions and providing guidance. Most people are completely overwhelmed and shocked when first diagnosed, so we attempt to meet with families and provide encouragement and a sense of hope. It is rewarding to see when their whole countenance changes – when they start to have confidence and hope that they can manage this disease. That is my favorite part – just being able to provide that sense of hope.
The most rewarding part of what I do is being able to watch families grow closer, to see marriages improve or be revitalized because of the reshaping of priorities that often occurs when faced with ALS. We see communities come together and get behind the person and family affected. Focusing on those things helps me cope with the nature of ALS and the loss that comes with it.
I also value being able to help our Care Services team grow professionally and grow in their ability to do their jobs more effectively. Seeing them step out of their comfort zones and walking alongside them through that process is really fulfilling.
One of the biggest challenges we have faced recently when working with families is the significant changes in the healthcare landscape. Many people are no longer able to access services that their insurance previously covered – things that they need to improve their quality of life. The demand for loaner medical equipment and for our time in offering advice about insurance issues has refocused our team’s time to issues we haven’t previously had to deal with, which directly affects our ability to serve families.
Also, growing as an organization that serves a state as large as Texas requires a lot of strategic thinking. We have to think about how to reach every person with ALS in Texas with the resources we have now in a smart and strategic way and how to maximize every dollar.
I count it an honor to work with people who are affected by a terminal illness on a daily basis. Not a lot of people get that opportunity. It continually reminds me of where my priorities need to be. When you lose something as significant as your health…that’s a gut check. The material world and the little things in life are not important – relationships with people are what’s important. So it constantly reminds me to put my time and energy into relationships and growing with other people.
We always talk amongst our staff about working ourselves out of a job. It will be a great day when we accomplish that – when we don’t have to see anyone suffer from ALS anymore. In the meantime, our role here in Texas is to make sure that everyone affected by ALS has the information and access to clinical care they need to have the best quality of life they can have. That’s really the overall vision for me.
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