Blessed with Autism: A Parent’s Guide to Securing Financial Support for the Treatment of Children with Autism
Peck, C. A. (2008). Blessed with autism: A parent's guide to securing financial support for the treatment of children with autism. Self-published.
Reviewed by Josh Pritchard, MS BCBA,
Co-editor, Science in Autism Treatment Newsletter
Blessed with Autism by Christina Peck is a guide for parents on how to secure funding for the treatment of their child. I am sharing this book review as it is consistent with the second part of ASAT's mission: “to improve access to effective, science-based treatments for all people with autism, regardless of age, severity of condition, income or place of residence.” With so many variations of insurance, state support, and educational requirements, it seems difficult for someone to write a single book that would be of much help to parents from diverse regions across the country. However, Peck was able to maintain the fine balance between keeping her instructions, tips, and examples broad enough to be helpful across a multitude of locales while also being specific and detailed enough to be usable. It is my hope that from this book will stem a research line that delineates the most effective empirically-supported approach to effective advocacy. This review will provide the reader with a glimpse of the contents of Peck's book while pointing out some salient components that set it apart from others.
Peck walks the reader through her personal experience with her firstborn, Sami. From the beginning of her contractions, the delivery and APGAR tests, to the first several signs that her daughter had autism, Peck demonstrated the required persistence by describing the efforts(a full day) just to schedule a developmental pediatric appointment. This chapter sets the tone for the rest of the book.
The second chapter begins with the words many parents dread – and the horror with which they are associated. It paints a very real picture of the anguish felt as her words unfold, even to a reader who has not been in this situation. However, Peck doesn‘t wallow in self-pity; rather, she indicates the actions one must immediately take: the first step- find a private consultant. This might have been a good opportunity to espouse the characteristics of a consultant for which parents should be looking, but as the chapter progresses, the consultant‘s techniques become clearer. While Peck failed to specifically name behavior analysis (ABA), she did describe some of the programs she utilized with ABA-based treatment, and made the astute observation that it is now part of how she routinely parents. This way-of-life mentality is incredibly important to the well-being of the children. As she continues to describe the various therapies provided, she makes the point that although hiring therapists is important (and also gives tips on where and how to find good potential consultants), they are the parents who must become the child's “protectors, advocates, and the best therapists he or she will ever have.”
This chapter begins to demonstrate Peck's ingenuity and methodical planning and execution in acquiring appropriate treatment for her daughter. Her first interaction with the state early intervention treatment team is detailed and allows readers to view, firsthand, the intensity, determination, and assertive qualities required to effectively advocate for their child. After this initial interaction, Peck demonstrated that often a firm, yet pleasant and polite advocate can develop a respectful, effective, long-lasting and pleasant relationship with case managers and others with whom they must advocate for their child.
As Chapter 3 begins, the reader gains insight into Sami‘s life and progress. They can see what effective advocacy can do to help a child with state funding and educational support. Until this point, there had been no mention of insurance, so when Peck's husband mentioned it a bit off-handedly, she called the insurance company the next morning. During this call, she discovered something that makes this book invaluable. It is here that Peck begins to unravel the deviously intertwined system of insurance codes, rules, and regulations. She found that autism would not be covered if billed as such, but that often, the same services can be covered under different diagnoses. In their case, speech therapy was covered if due to ear infections and apraxia. She discovered the flexibility of insurance companies as they allowed her to increase the 30 approved visits of speech therapy by 110 sessions. Becoming knowledgeable about insurance coding can help to relieve some of the financial burden for families (many of whom have already made significant sacrifices) and allow them to focus on effective, uninterrupted treatment for their loved ones.
The power of Peck‘s recommendations and systematic approach to funding is that she never recommends reliance on a single funding source. In Chapter 4, the reader is introduced to the public school system and given the same detailed steps for success when dealing with this entity. She includes her letters to the director of special education as well as an itemized list of non-negotiable services requested for the first year of Sami's school career. At this point, Peck has provided a parent with enough knowledge, examples, and tips to help secure (funded) treatment for their child, saving potentially thousands of dollars in the process.
Throughout the next three chapters, Peck outlines the roller coaster ride that was her life; with the advent of Sami's success in school, the birth of a second child, the death of the family dog coinciding with a positive pregnancy test, telling a story that could easily have fallen into a monotonous cadence but rather reveals passion, life, and an urgency that keeps the pages turning.
Additional exemplary models of advocacy are described (and supplemented with a copy of requests for school services) for Sami's return to school. A report of demonstrated cost-savings over the previous year was the trump card Peck utilized to get the most out of her IEP meetings. When discussing the negotiation of IEPs, an important point is stressed: “Urgent Note: Remember, if you are negotiating an IEP for the first time, aim high.” This is key - the idea being that each year, if you reduce the cost of your requests and can demonstrate that savings, you are on much better ground from which to launch your requests
While Peck does a wonderful job of describing the emotional ride of her life, she shares photos throughout that convey that which her words are simply unable to do. When comparing photos of Sami from the earlier chapter to those in chapter eight, one can easily see the slight upturn of Sami‘s lips, and the twinkle in her eye. To a parent faced with such a daunting task, these simple pictures can become a powerful beacon of hope. Nearly halfway into the book, Peck describes the moment of success. This heart-wrenching story has come to a happy conclusion the doctor reports that Sami was 'rewiring… and may not need ABA or speech therapy' – all of this work had been worth it! A parent reading this can breathe easier, knowing it can be done.
Peck continues to share jewel after jewel as she describes how she quickly wrote some thank-you letters, but then dove head first into the third IEP meeting requests, summaries, and reports. With all of the hassle of these meetings, the rigorous schedules required, and Peck's sacrifice of her own social life, some readers might ask, “why not stop and bask in her glorious success?” Peck wisely points out that although she was elated; this was not a time to become complacent. If she had stopped there, Sami might not be where she is today, and more importantly to the reader, this book probably would not have been written. She concludes by describing her daughter‘s amazing progress and status and the immense love she feels toward her.
Chapters 10 and 11 are workbooks that walk the parent step-by-step through the process of interacting with their insurance company. Complete with sample letters, invoices, and more tips and tricks, these chapters provide a reference guide, enabling novices to immediately begin advocating for their child, to prepare adequately for interactions regarding reimbursement and funding. These chapters also provide a quick-and-dirty explanation of the confusing world of insurance codes. Parents who follow the steps outlined in these chapters will find themselves with an amazingly comprehensive record of all they've done, as well as a higher likelihood of successful funding. From providing specific questions to ask insurance carriers, to formulas for calculating reasonable rates of providers, Peck has provided a fantastic resource that allows the systematic replication of the herculean efforts she displayed in securing a promising future for her beloved child.
In the final chapter before the workbooks began, Peck revealed that she was struggling with the idea that her youngest might also be on the spectrum. It is at that moment when the extraordinary value of this book becomes evident. Through her journey, Peck developed the confidence and ability to stare this daunting diagnosis in the face, and learn about herself that she has the wherewithal to not only cope with autism, but actively treat the symptoms and problems with which it is associated. She admits that her road is not over, but assures the reader that it is “has been repaved and is much smoother.” To parents questioning their ability, this could be music to their ears. The message is loud and clear – it will not be easy, it will not always be fun –but with the right approach, lots of time and effort, parents can gain the confidence and ability to not only advocate, but actively help their child reach his or her potential. When reading this book, one can feel the elation and glow of a hard-earned success and the satisfaction of knowing that Sami was blessed to have such tenacious parents.
In conclusion, Blessed with Autism provides parents (or any other advocates) a delightful read, as well as a treasure trove of resources for the organization and systematized execution of a battle plan to secure funding for the treatment of one‘s child. Readers might easily find themselves turning the final page, with goose bumps wondering how Peck was able to pack so much information and organization into a book that simultaneously had the ability to warm their hearts and bring hope and direction to their current situation.