Reinventing your life with your Occupational Therapist

A pet peeve for Occupational Therapists (OT) in the world of Rehab is when someone who is not an occupational therapist says, "Oh, the OT helps you with upper extremity exercises, cooking and learning how to take a bath and get dressed." OTs do these things and a whole lot more. The best description of Occupational Therapy comes right from the OT program at the University of Kansas: 

Occupational therapy helps people improve their ability to perform tasks in living and working environments. It's a science-driven profession that enables people of all ages to live life to its fullest by helping them promote health and live actively with illness, injury or disability.

This is a perfect description of the way an OT develops supports and strategies for people with brain injuries in the community. I once had someone tell me they didn't think a woman named Sasha could make improvements because her brain injury was too severe, she couldn't list 3 goals she had for rehab and she didn't want to go out of the house because she knew people would stare.  My immediate response was to send in an OT to work with Sasha. Here are the 5 things that happened: 

5.  The OT was able to help Sasha understand that it is natural to be afraid to go out into the community for the first time after such a big event and that it can feel like everyone is staring but it takes practice to overcome both. They decided to break things down into manageable steps. 

4. The OT got Sasha out into the community for the first time since her brain injury. The OT was able to offer reassurance that she would help Sasha be safe (not fall), figure how what she could do (assess strengths) and have fun (live life to the fullest). Their first time out was a walk to the car and a ride to the store. They sat in the parking lot watching people and Sasha decided that was enough for one day. 

3. Sasha was able to identify a few things she loves to do like make bracelets, cook Indian food and do yoga. All three seemed beyond her capability (to her and to her physician) but the OT decided to help address all 3 goals. They involved not only upper extremities and functional movement but also included cognitive skills like planning, problem solving and reasoning. 

2. The OT was able to translate to the case manager and insurance company why these goals are medically necessary and would lead to a more independent lifestyle for Sasha. Being able to "medical speak" is a wonderful attribute of OT's who are also able to live in the real world of every day language. 

1. The OT was able to help Sasha set goals, achieve those goals and believe in herself. She took the bracelet making, cooking and yoga well beyond those goals and Sasha is now employed in a field she had not experienced before her brain injury. 

So, when in doubt, always call the Occupational Therapist in to help with a fresh perspective on living life to the fullest. OTs have a  great vantage point on the social, emotional, cognitive and physical in a way that helps each individual develop their own plan for achieving goals. 

Navigating Home

Anyone can live at home, no matter the significance of disability. Three critical components to make that happen are significant social support, advocacy and resources. Thankfully Kansas has been a forward thinking state in this regard for many years. They have even passed laws making it a right to live at home and not in a facility. The recently designed KanCare system has not changed the constellation of services available, just how you access them. 

When a significant incident happens forcing you to rely on disability or public assistance, you are forced to deal with the daunting medical issues and decisions while being expected to figure out how to traverse the many steps to get home. The first step in the process is applying for disability. Below is a chart that was developed between Stormont Vail Hospital and Minds Matter LLC to help people navigate the disability and eligibility maze. This is a necessary step in the process to get in home services and supports after brain injury. If you are starting this process from the hospital, the social worker can help you get started. If you are starting this process from another place, like a rehab facility, nursing home, or from home, you can utilize Minds Matter LLC to get started. 

The steps to getting on the Traumatic Brain Injury waiver in Kansas. 

The role of a speech therapist on your journey to inclusion

I remember the first time I sat in on a team meeting about someone who was receiving speech therapy at the rehab hospital where I worked. I was a recently hired social worker who had just graduated from college so I was sure I knew everything. I knew the person we were talking about well. We met weekly to talk about her desire to go home. She was articulate, bright and had no issue telling me what was on her mind. I sat in the team meeting wondering why she needed speech therapy. 'She speaks so well,' I thought. The speech therapist gave a 15 minute report and detailed the reasoning, judgement, problem solving and memory issues they were working on. I was mesmerized by the techniques they were using to address upcoming functional issues the person would address when she went home. From then on, I spent as much time as possible with each of the speech therapists at our rehab and learned about communication, every cognitive challenge after brain injury and fascinating ways to help people improve their functioning. I began to believe everyone with any cognitive- communication issues needed a speech therapist on their team. 

Fast forward a few years later when I became immersed in believing that everyone has a place in the community. I met a great man named Dr. Mark Ylvisaker, a speech language pathologist, who continues to have a profound impact on our work here in Kansas. He gave voice to the need for positive everyday routines for people living in the community, no matter the significance of their disability. He believed that everything we say or do is a form of communication. I specifically learned the most from him about how behavior is an important form of communication. Our job is to help people find ways, through every day routines, to effectively communicate what they need. We find that the transformation that happens when people are able to have control over their daily routines and communicate their needs more effectively, positive behaviors result and negative behaviors go away. We, at Minds Matter, still use Mark's work, across therapy teams, to support positive every day routines. 

Dr. Ylvisaker, and all other speech language pathologists, have taught me that the role of a speech therapist goes well beyond "speaking well" and swallowing. The speech therapist plays a vital role on any team helping assess, and implement plans that address all facets of cognitive functioning. 

We have 9 speech language pathologists at Minds Matter LLC who each have a different approach with the same goal, to support every day routines in the community whether it be using a communication device (see Grant's story), learning to manage their aphasia, learning to communicate in a positive way, or implementing any of a myriad of cognitive strategies to be successful away from professional help. 

Dr. Ylvisaker passed away May 23, 2009. Over the course of his 35 year career, Mark gained worldwide distinction for his ground-breaking approaches to brain injury rehabilitation and his clinical work with children and adolescents with disabilities, assisting programs in all 50 states and over 15 countries in the development of innovative services. He was known and respected throughout the world for his boundless optimism and his passionate commitment to his work, to the people he supported, and for his unique ability to help individuals with disabilities, families, and professionals overcome barriers and achieve success in life. 

Here is a link to a great interview Dr. Ylvisaker did in 2007. It amplifies his belief that formal testing can be very limiting and thinking across disciplines is critical in helping people be successful after brain injury:

http://www.internationalbrain.org/articles/on-neurorehabilitation-a-conversation-with-mark-ylvisaker-phd/

Community Inclusion after Brain Injury: busting myths, revealing reality

Community Inclusion after Brain Injury

busting myths, revealing reality

by Janet M. Williams, PhD

president, communityworks, inc.

When Joe was 18 years old, he was involved in a nearly fatal car wreck. In a race against time, a life flight team transported him to the nearest trauma center. His chances of survival were uncertain, but his diagnosis was clear: Joe had experienced a significant brain injury. 

As his loved ones worried and waited, Joe began to emerge from the coma. He was assigned a case manager – a person who represented the interests of the insurance provider. Joe’s journey had begun. He was directed to various "treatment" programs that pledged to maximize his rehabilitation potential. One year after his injury, the insurance company determined that Joe had achieved all he was capable of achieving. He was sent to a center designed specifically for people with brain injuries. His bills would be paid by Medicaid. According to the insurance provider, the best possible outcome had been achieved. Joe didn’t agree. Joe wasn’t satisfied with this outcome and he wanted more options. He wanted to decide for himself – and he wanted to return home. Sadly, Joe’s fate was based on myths that limit opportunities.

Myth One: People with brain injuries must be fixed before they can return home.

The Reality. The traditional medical model approach for providing services for people with brain injuries is inadequate in supporting self-sufficiency and community membership. The current service system focuses on "fixing" individuals through the use of deficit- based assessment and planning (Williams, 2008). It is grounded in the notion that individuals living with brain injuries require intervention before they can "earn" the right to re-enter the community. The constellation of deficits becomes the reason to keep people in protected environments, often at great financial and emotional cost to the person, family and society. An overwhelming number of requests from people who wish to make the transition back home are ignored. Instead, they are redirected to nursing homes and other long term care institutions. 

Myth Two: People with brain injuries only have one productive year of recovery. After a year: "what you see is what you get."

The Reality. All too often, medical professionals stop recommending rehabilitation after a person reaches the one-year anniversary of a brain injury. While many people may experience rapid, remarkable progress the first year, progress continues well beyond that time. In fact, it often takes a year for the person to advance to a place where they can develop insight into what has happened and begin to establish their goals for moving forward. It is at this time that individuals’ interest and desire to participate in rehabilitation ignite. The one-year mark is often a place in the journey where people begin to realize new possibilities. 

Myth Three: Case managers always work for the patient. 

The Reality. The truth is that case managers are often juggling competing interests. That’s not a bad thing; it’s just a reality. Case managers must acknowledge that they must balance the rights of their patients/ clients with the payer source. When a case manager acknowledges the competing interests, he or she can move forward with advocacy that recognizes the needs and goals of both parties – the patient as well as the payer source. Ultimately, their role is to "manage the case" by facilitating a win/win outcome for everyone. It is critical for case managers to disclose who they’re being paid by and to explain the rights of an individual to appeal any recommendations that are made. In an environment of scarce resources, case managers can best assist people by ensuring that available resources are used to attain the goals of the individual, as much as the payer. 

Myth Four: The best rehabilitation happens in a post-acute rehabilitation hospital. 

The Reality. The best rehabilitation happens in a setting where the individual is most likely to reach his or her immediate goals. The optimal setting should be suited to the individual’s stage in the recovery process. For example, if a person has significant physical needs and requires advanced equipment, a post-acute setting can be ideal. If a person needs to relearn daily living skills, rehabilitation is most beneficial when it occurs at home. By participating in regular routines with the support of rehabilitation professionals, individuals can make progress in a real world environment. Unfortunately, going home is often viewed as the end of the line for many rehabilitation services. All too often, "family education" is offered as a substitute. An entire industry of family-coping-after-brain- injury resources has evolved. If a longitudinal study examining the true cost of sending people home when they are "done" (as mandated by a payer source) were conducted, it would likely reveal some surprising findings. The cost of readmission to medical settings, mental health services and other system interventions is far greater than one would imagine. In contrast, by supporting people at home by providing services needed for self-sufficiency and community membership, there’s a significant long-term savings. 

Myth Five: Group homes are community based services. 

The Reality. Group homes and other congregate living centers are not "of" the community if they are owned or operated by the same agency that provides the services. If a person can change service providers while remaining in the same living situation, they are not bound by the rules of the provider. Individuals who live independently in a home that they choose have true choice of providers. They are viewed and treated as customers - not commodities. Being "of" the community means being able to live in your own home or your family's home. It means being a friend, neighbor or coworker, not a recipient of services. 

These five myths begin to challenge the dominant paradigm in the field of brain injury. What if there was an alternative perspective? Perhaps there is. Instead of “fixing” a person and sending him or her home, it’s time to consider reversing the sequence. What if individuals who experience serious brain injury were able to go home and work with therapists in familiar surroundings to relearn skills and adapt to changes? By resuming daily routines and defining their own lifestyle goals, the journey to a rewarding and meaningful life just may become a little less arduous. Throughout the rehabilitation process, it’s imperative that we focus on strengths, not deficits and on goals set by the person, not the professional. 

By revealing these realities we can begin to hope that individuals like Joe who experience serious brain injuries will be able to live their life, their way – engaged in the community and the things they want to accomplish. The reality is that Joe and others in similar situations deserve the opportunity to chart their own course and create their own future.