Edited by Elisa J. Sobo and Paul S. Kurtin; 291 pages. Subtitle: Knowledge and Strategies for Navigating the System
If you're up for a challenging read that's more technical than personal, written more for professionals than parents, this collection of essays holds some interesting thoughts about parents' perception of the health-care system and what doctors and insurers can do to provide better, more efficient, and more humane care. You'll just have to keep your eyes from crossing when you hit some of those passages full of dry statistics and medical terms.
- It's great to know that parents aren't the only ones who see problems with the health-care system
- Concepts like a medical home or computerized health records are exciting
- Writers offer sensitivity to parents' points of view
- Much of the writing on parents' roles and reactions are thought-provoking
- You've probably become your child's health-care coordinator, so you might as well read like one
- Parents are included in its audience, but it's not written for parents
- For every thought-provoking essay, there's one that's thought-choking
- Offers a good grasp of the problems, but solutions seem unlikely to happen quickly
- Part I: Setting the Stage for Change
1: Children With Special Health Care Needs: Evolving Definitions, Evolving Estimates - 2: Policies and Programs Relevant to Children With Special Health Care Needs
3: Matters of Finance - Part II: The Parent Experience
4: Incorporating Children With Disabilities Into Family Life - 5: Learning to Care and Advocate for Children With Special Health Care Needs: A Family Perspective
- Part III: The Provider Experience
6: Creating a Medical Home for Children With Special Health Care Needs - 7: Primary Care Practice and Children With Special Health Care Needs: Actual and Ideal
- 8: Case Management of Children With Special Health Care Needs: The Pediatrician Perspective
- 9: Disrupting Dreams, Making Discoveries, and Deciphering Systems of Care
- Part IV: Present Strategies, Future Directions
10: Mastering the Health Care System - 11: Accessing Quality Care for Children With Special Health Care Needs: The Future of Policy and Research
After reading a couple of books about parents' nightmare journeys through the health-care system with critically ill children -- Tiny Titan and Alex: The Fathering of a Preemie -- it was heartening to read this book full of writings by professionals in the health-care field and find that they also acknowledge that the time of the know-it-all doctor, the parent-excluding care, the obstructionist insurance company, and the uncoordinated cases should be over, stat.
Using research, experience, and sweet common sense, the writers here promote the idea of a "medical home" -- a coordinating entity that will make sure all doctors communicate, all referrals are handled, all information is shared, and all options are considered. If you've ever done one of those phone roundelays between a doctor and a specialist and an insurer in which everybody claims to have never heard from anybody else, this idea will be appealing. Throughout the book, the essay authors are careful to specify that parents should be partners in the process, not pack animals.
Also given some thought in the essays here is the importance of doctors putting their records online, so that instead of having to hunt up two or three thick file folders when a patient comes or calls, doctors and specialists can get the information they need with a few mouse clicks, possibly avoiding the necessity of parents having to spell out all details of a case for every professional they see.
There are lots of good ideas here, and lots of appreciation for the way moms and dads adjust and advocate and network. I just wish it wasn't all written in professional-ese, which never uses one word when 10 jargon-filled ones will do. And I wish it didn't all seem so far off. Once you think about how much sense this all makes, you want to see it happening now.
