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Lessons on Perseverance in the Quest for Adequate Healthcare

As most people with a variety of conditions will attest, navigating the healthcare system can be a tricky endeavor at best. Based on my own experience, I’d venture to say that this is even truer for those with developmental disabilities, especially during the years between entering adulthood and the later stages of life.

While healthcare related struggles are not exclusively confined to adults with disabilities, we as a group do face a unique set of challenges in accessing the care we need in order to live our lives to the fullest. These challenges are multifaceted and cannot be adequately discussed or addressed in this space alone; but in part, they include finances, the way in which the U.S. medical system is structured, and lack of adequate and continual knowledge about how to appropriately treat adults with disabilities among medical professionals.

At 28, I’ve often felt as well as heard others with disabilities describe transitioning to adulthood as being akin to falling off a cliff in terms of healthcare and other needed services. I can remember the fear and confusion I felt when, having turned 22 and in the midst of an unexpected medical crisis I could not find a single medical professional who was able to adequately address my needs as a young adult with Cerebral Palsy. Up to that point, none of my pediatric specialists had ever mentioned the fact that adult healthcare professionals were not as versed in “childhood” conditions such as CP as they were; and being young, it had never occurred to me to ask questions about or make a plan for my long-term needs.

In many ways, my struggles to find adequate healthcare have not only persisted but increased as I’ve continued to age. And though I can only speak for myself, I know I’m not alone. However, recently I’ve had unparalleled success in finding clinicians that are both willing and able to help me better manage many aspects of growing older with complex health concerns. While my experience in finding health care providers who were able to meet my needs has less to do with anything I’ve done and more to do with the fact that they themselves are open-minded, caring individuals, experience can be a great teacher. I’m certainly not an expert on the U.S. medical system or how to navigate it, but as someone who continues to tread the murky waters of adulthood with significant challenges, I can confidently say that I have learned the importance of perseverance and become a better self-advocate because of my struggles in this area.

In some respects, I only have the services I do now because I didn’t give up looking for them. So, if I could give one quick piece of advice to any of my fellow adults with disabilities struggling to obtain adequate care, other services, or simply to live their lives in the midst of the unique challenges presented to them, it would be: Don’t give up! Or in the words of Dory from “Finding Nemo,” just keep swimming. Keep looking for the health-related or other resources you need. Call every doctor, therapist or professional that Google can find, if you must. Continue to ask friends and fellow self-advocates for referrals. And, if the services you need just aren’t there, go about helping to create them. Self-advocacy is difficult and many days it may not even seem worth the effort, but as persons with disabilities, it is one of the most important endeavors we can undertake to shape both our own lives and the lives of those who will come after us.

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