by Sandi Reese
Be the change you wish to see — Ghandi
When my son was born 12 years ago, like many parents of children with complex health care needs, I had no idea what lay before me. I was naïve and most definitely unprepared for the challenges ahead. In fact, it was not until my son was 15 months old that we received a definitive diagnosis and a broader explanation of what was to come. That being said, even with a proper diagnosis, there were many unknowns. And, as we began our health care journey, Brandon and I experienced both compassionate family-centered care and indifference from numerous doctors, nurses and therapists in a myriad of health care settings.
Identifying the Problem
As the parent of a child with special needs, you probably spend a large part of your life in clinics, doctors’ offices, and hospitals, and have seen opportunities to improve these interactions for your child and others. I think it is safe to say we have all experienced the good, the bad and sometimes the ugly when it comes to health care.
Perhaps you wish doctors, specialists, and other medical professionals would take the time to explain your child’s condition and recommend treatments in easy to understand terms rather than using complicated medical jargon. Or, you feel as though the concerns you have about your child’s health and well-being are not being heard and too easily dismissed. Maybe you have developed a list of ways to improve processes at your local clinic or hospital so that your child and other patients feel more empowered and welcomed. And, some of you are praying this will be the year your child clears a Medicaid waiver waitlist and wish there was something you could do to change the health care system.
So, what do you do with these burning ideas and frustrations? How can YOU make a difference?
First of all, I want to ENCOURAGE and remind you that because of your life’s journey, you are developing skills and competencies in areas of expertise that are unique and valuable. As parents, we may not have medical training or political connections, but that does not minimize our knowledge or ability to effect positive change in the world of health care. We offer a perspective that cannot be found in medical textbooks, taught by a college professor, or assumed by our local legislator. It can only be learned through the on-the-job training of parenting a child with special health care needs.
I realize not all of us have the time, desire or ability to step into the ring of health care advocacy. The day-to-day demands of caring for our children can be overwhelming in and of itself. However, when we share our unique perspective with medical providers, decision makers in the health care industry, and legislators, we give them an opportunity to improve practices, services and policies for the benefit of others. If we don’t tell them, how will they know and why would they change?
Types of Health Care Advocacy
For those of you who have felt the call and are ready to take that first step, you are probably wondering where to begin. The best place to start is to decide which area of health care advocacy you want to focus on: legislative advocacy or patient advocacy.
Legislative advocacy involves sharing your concerns relating to health care legislation, and how it affects your family, with your local legislator. This can be done through in-person visits, letters, email, or phone calls. You can also participate by testifying at your state capitol during a public hearing on health care.
Click below for some Legislative Advocacy Tips:
Patient Advocacy is the process of working collaboratively (together) with medical professionals toward the common goal of improving the patient experience within a health care facility or system. This movement within health care is often referred to as Patient or Family-Centered Care.
My first patient advocacy opportunity came a few years ago when a nurse asked me to participate in a Family-Centered Care committee at my local children’s hospital. I was excited but also somewhat skeptical. Would my thoughts and ideas be taken seriously? After all, I don’t have medical credentials, I am just a parent.
Walking into that first meeting, I carried my skepticism with me, but it faded quickly as I was welcomed with open arms and immediately asked for my opinion on a surgical services policy. Due to the hard work of this committee, which is comprised of various hospital personnel and parent volunteers (advisors), incredible changes have occurred for the benefit of ALL patients—not just my own child.
Did you know that many hospitals either now have or are forming Patient and Family-Centered Care committees, and need patient and parent volunteers to serve as advisors? These committees review hospital policies and communications, develop patient education materials, consult with administrators on hospital design and services, and may be asked for input on specific issues brought to the committee by various departments within the facility. Often there is an application process and a background check involved in order to participate. If you are interested in serving in this capacity, I would suggest you search your hospital’s website for their Patient Advocate or Family Liaison contact information. Larger hospitals sometimes have departments dedicated to patient advocacy. Typically, these staff members either coordinate Family-Centered Care activities or would know who to put you in touch with.
A few patient advocacy tips:
- Be committed and attend meetings regularly
- Be positive
- Communicate objectively and clearly
- Respect the privacy of patients
- Respect the diversity of the team
- Work well with others
Other Forms of Advocacy
I also volunteer as a Parent Faculty member for a local medical resident training program run by a parent-driven organization called Texas Parent-to-Parent. This program, MEd, is currently available in Austin and Temple, Texas. Its primary focus is to improve health care practices for our children by educating the next generation of health care providers on the complexities of raising children with complex health care needs.
I encourage you to check with teaching hospitals and medical schools in your area to see if they have similar training for their residents and students, and are in need of family volunteers. This area of health care advocacy is the most exciting to me! The medical residents are so anxious to learn how they can help families in meaningful and practical ways. I find it to be incredibly rewarding and worthy of my efforts and time.
For those of you who accept the call into this realm of advocacy, I wish you much success in your endeavors as you “become the change!” For those who feel called into other areas of advocacy, I wish you the same. My hope and prayer for all is that you stay strong, live boldly and be encouraged by knowing you are not alone.