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The Art of Advocacy – Healing a Young Adult with a Childhood-onset Chronic Condition (guest blog)

We all know how hard it is to advocate for ourselves, our spouses and our parents. But can you imagine having to advocate for your child day in and day out for the rest of your life? This is the harsh reality faced by many parents of children with childhood-onset health conditions and disabilities. And believe me, it is hard! When my perfectly healthy child became critically ill at the age of 8 years, I went from being a medical fellow to a life-long, full-time parent advocate.

I learned everything I didn’t want to know about the health care system, but I eventually realized that the knowledge I acquired as an advocate is equally critical to health care practitioners if they are to provide quality health care, i.e., the right care the right way at the right time. Adding the dimension of patient-centered care means care is delivered the way patients need and want it.

Right now, we are still learning how to advocate for the right care the right way at the right time. It looks like we’ll have to wait a while to get care the way we need and want it.

As a parent and a physician, I had to be extra careful in the pediatric health care world. If I came across as too demanding, I would have been dismissed as a neurotic or helicopter parent. (I know a couple of physician-parents who were erroneously said to have Munchausen’s Syndrome by proxy.) If I didn’t advocate, I risked danger. In every situation, I had to find the fine line between objectivity and subjectivity, to assure myself that I truly was balanced in my approach.

The problem is that even though most of us know what to advocate for, we are still dealing with human beings in the health care system. They have pressures and barriers, they have egos, they have feelings – and they have the knowledge. The art of advocacy is getting health care providers to do the following:

  • Provide the best care so the patient achieves and maintains optimal health, and
  • Empower patients with the knowledge needed to make informed decisions and self-manage their health and health care.

The art of advocacy should empower health care providers to practice the art of medicine.

Parent advocates have another equally complex system to tackle: the education system. After learning about all the various laws, e.g., American with Disabilities Act, Individuals with Disabilities Education Act and Section 504 of the Rehabilitation Act, parents have to learn about the culture of their child’s school as well as the county and state educational systems. Then, parents have to advocate with human beings in the educational system to practice the art of education.

When our children grow up and enter adulthood, all the rules change and we are back at square one again. The only consistency is that the systems are devoid of supports, and as parents, it is up to us to start over and learn from scratch on how to advocate for young adults with childhood-onset conditions and disabilities.

Santi Bhagat, MD, MPH
Founder, Physicial-Parent Caregivers

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October 6, 2011 - Posted by | Audience Communication

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