Month: August 2020

Approximately 8 years ago, I participated in a conference where a diverse group of people with disabilities, their family members, and professionals came together for a day to learn from each other. The conference was designed to promote new ways to connect, form a common mission, and engage.

Prior to attending the conference, I wrote an article about the concept of Burnout and the qualities of burnout that professionals and individuals sometimes fail to recognize when it happens. In short, Burnout refers to long-term exhaustion and disengaging from subjects that are important to us. When a person experiences it, it can cause us to pause and question: “Why am I doing this?”

One of the opening exercises at the conference included a go- round where people were asked to name a person or an event that brought them to the disabilities field. Before I responded, I thought about every person, -past and present who has stood and engaged for me and with me. I stand for every child and adult behind me.

When I started in the disability field, I saw attitudes, environments, and systems that I wanted to influence. I wanted to make my community more inclusive and the communities around me more inclusive. Inclusive to me means creating easier access and participation – both within built environments and simultaneously creating full involvement with my peers, both with and without disabilities. I don’t want to just get to the door, I want to get in and engage.

The concept of inclusion has been around for decades and yet many people with disabilities still fight to not only get in, but to also engage. True engagement to me means participating with every person within a given environment.

Change starts when people come together with a new or reignited spark of passion. The sphere of change grows when people take that passion and start to engage. It happens when we start to observe what exists – when we see the programs and the people that are including people with disabilities every day and it’s just a part of everyday practice. The sphere of change continues to grow when we connect with the people who are doing it and ask, “How do I do it?” For successful coalition development, groups of people need to come together with a common goal and engage.

For true inclusion to take root and spread, people need to observe their communities and identify what resources currently exist, gather data, engage, and form nontraditional partnerships between individuals, families, schools, community-based organizations, and businesses to expand what is working.

If you are tired, remember what brought you to the profession. Remember who brought you to the profession, help others that want to not only get in, but actively engage.

We’ve all gotten that standard form letter that contains the dreaded line, “your physician will be leaving.” In my case, the recent letter announced that my physiatrist, Dr. A. would be leaving the region marking the end of a multi-year relationship. The unexpected news caused me to stop and reflect on Dr. A’s role in the development of my walking program. What established the positive working alliance between us? When I originally embarked on my journey to walk device- free, I did not know what a Physiatrist was or what a critical role this specialty would play in my progression.

Physiatrists focus on restoring and maintaining optimal body function. They closely supervise and manage the medical complications associated with Cerebral Palsy and other disabilities that impact mobility and muscle movement. They treat acute and chronic pain and musculoskeletal problems such as with the back and neck. Physiatrists diagnose conditions, oversee treatment, therapy, and medications.

My treatment course frequently changed with Dr. A’s guidance. Scores of literature confirm that in order for an effective partnership to be formed, first a rapport has to be established. My relationship with any physician starts out with a sense of wariness.

Did they read my file? Do they know what my issues are? Will they be willing to adopt a progressive approach in the management of my disability? Will they accept and embrace my goals for improved mobility and greater independence?

I will never be a passive patient. I am an active contributor in the decision-making related to my medical care. I work hard to find physicians who will engage and collaborate with me. I want to work with professionals who will actively listen, check my understanding, and endorse inquiry, mutual problem-solving, and decision-making. I want them to have the same goals and for us to come to agreement on the treatment course together. Coming to this desired state of agreement or consensus is not always neat.

When I first met Dr. A., there was not a “getting to know you.” stage. I was in significant pain from musculoskeletal problems in my back. I had only one goal – to make the pain to stop. It did not matter what it took. Dr. A., at my request, took charge and conferred with other professionals I trusted including my Neurologist and Movement Specialists.

She learned about my therapies, and fitness and walking program, and the exercise approaches being used, and built upon efforts already underway. When we discovered that I had three herniated discs in my back, existing exercises were modified under Dr. A’s guidance and pain management strategies were employed.

What I found most impressive was the level of consideration that Dr. A displayed for my observations and opinions. While she certainly took into account the observations of the other professionals working with me, I was always the final decision-maker about what would or would not happen next.

She completely gained my trust and esteem when I discovered that she provided her personal cell phone number to my Movement Specialists, indicating that they could call her with questions or concerns. She also steered me,or those working with me, in another direction if we were not seeing expected results or if she observed well-intentioned efforts were not having positive outcomes.

She also guided me on what information would be helpful to her. The use of video became a critical tool in our work. The video clips showed specific exercise interventions, progressions in time with specific angles and sequences of movement. The video provided visual references that my doctor would not see during short office visits. The video gave Dr. A. a better diagnostic and assessment tool. When I walked in for my appointments, I knew Dr. A. had watched the footage. I knew from the questions she asked and from the movement sequences that she would have me perform.

Dr. A. became and stayed a thoroughly engaged and active partner in my care. Our partnership is a model for others. An effective working alliance is built from “advance planning, gathering information, and building a framework for discussion” between a physician and their patient. This principle is emphasized when a healthcare provider has to relay complex information or “bad news”. [i] Dr. A. knew I did my homework. I would read about all of the treatment options or interventions proposed and she would be ready when I walked in the door to respond to my questions.

Healthcare providers are taught to assess how much a patient knows about their disability or condition. [ii] Dr. A. knew that I knowledgeable about my Spastic Cerebral Palsy. She also knew that I wanted to learn more. One of the best responses a patient can hear from their Healthcare provider is, “I don’t know, but I will research it.” Dr. A. said this to me more than once and then did the research.

A principle emphasized in Healthcare education is supporting next steps and follow-through. [iii] Dr. A. ensured that my Movement Specialists and other professionals working with me had the information and guidance that they needed to implement program or exercise modifications to address challenges I might be experiencing.

The highlighted principles can be applied across numerous Medical, Health, Fitness, and Wellness Disciplines. The two most aptly applied principles to form an effective working alliance are: listening to the client/patient and supporting them. Dr. A. did this in our work. She supported the development of the foundation for positive health outcomes and an effective working alliance; moving beyond rapport to true collaboration.

[i] Communication strategies for difficult physician-patient interactions. Maureen Leahy. AAOS Now. (Apr. 2012) p14.

[ii] Communication strategies for difficult physician-patient interactions. Maureen Leahy. AAOS Now. (Apr. 2012) p14.

[iii] Communication strategies for difficult physician-patient interactions. Maureen Leahy. AAOS Now. (Apr. 2012) p14.

This article was originally published in the “Endless CapABILITIES Blog”, and National Center on Health, Physical Activity and Disability, sponsored by The National Center on Health, Physical Activity and Disability (www.nchpad.org). NCHPAD is part of the UAB/Lakeshore Research Collaborative and supported by Grant/Cooperative Agreement Number U59DD000906 from the Centers for Disease Control and Prevention (CDC).