An Autism Lesson for 2007
Bill Long 7/26/07
From the President's Commission on Returning Veterans
Yesterday amid great fanfare the draft report of the President's Commission on Care for America's Returning Wounded Warriors, co-chaired by Bob Dole and Donna Shalala, was released. This report was not a long time in coming; indeed, by Washington DC standards, it was produced in the blink of the proverbial eye (the Commission was only appointed in March). The President duly thanked the Commissioners for their hard work, though the jury is still out on whether the report's recommendations will be implemented or will just gather dust. What struck me as I read through the report was how the first recommendation the Commission made is particularly timely for another community not contemplated in the report--the growing number of those affected by autism spectrum disorders and their families. This essay makes the connection between autism and the report of the President's Commission.
A Word About the Commission's Report
The Washington Post broke the story in March 2007 that veterans seriously injured in Iraq and Afghanistan were confronted with such significant medical bureaucratic hurdles upon return that many had to send in their paperwork numerous times; some waited for months to get treated; some never got treated at all; and a few even allegedly committed suicide while waiting for treatment. Head traumas topped the list of serious injuries; thus many of the veterans were in no position to "fight the system" for the treatment that they deserved. Acting quickly on a hugely embarrassing issue, the President appointed the aformentioned Commission and gave it wide berth to recommend changes in the way the Veterans Administration treats seriously wounded returning veterans. The Commission gave six major recommendations, but only the first one concerns me. It is the recommendation to appoint a group of so-called "Recovery Coordinators" whose job it would be to help the injured soldier navigate the health care system upon return to the United States. These "Recovery Coordinators" were, in fact, the linchpin of the report. Let me explain a little more about this recommendation and then show how it relates to the autism community.
The Recovery Coordinator
The Commission's first recommendation was to "Immediately Create Comprehensive Recovery Plans to Provide the Right Care and Support at the Right Time in the Right Place." The central point the Commission learned after visiting 23 hospitals and interviewing hundreds of veterans was that no one, in fact, was really looking out for the patients. They had to "fend for themselves" in a labyrinthine, forbidding, nightmarish bureaucratic system. The Commission calls for a "patient-centered" Recovery Plan, i.e., one that places the needs of the patients in first place. Central to making this work is a "corps of well-trained, highly-skilled Recovery Coordinators" whose job would be to "ensure prompt development and execution of the Recovery Plan."
In other words, the Commission recommended the creation of a corps of patients' advocates. It doesn't say how many patients each advocate should have, but it says that each patient should have such a person. This person, because of his/her knowledge and position with respect to the health delivery system, would be the one responsible to ensure and "efficient, effective, and smooth rehabilitation and transition back to military duty or civilan life; establish a single point of contact for patients and famlies; and elminate delays and steps in treatment and services." The coordinator would make the system work for the injured people.
Applying the Insight to the Autism Crisis Today
When a family receives a diagnosis of autism for a child, the family is thrown into crisis. You might say that the crisis had already begun when the parents noticed the child's unusual conduct, but the diagnosis of autism puts a name on what had, hitherto, solely been a series of disquieting behaviors. The reality felt by parents when this happens is that their world has been turned upside down. Their lives may forever be changed in ways that are, mostly, very very difficult. If there is one thing that parents need at this point, it is a "recovery coordinator." That is from the language of the Commission report, though I would favor the term "advocate for the child." They need someone who can say to them: 'here are the things you need to do, with respect to doctor appointments, specialist hiring, dealing with other siblings, worrying about jobs and money, etc. etc.' Such an advocate would be appointed by the state in order to ease the parent through a daunting and costly system. Such an advocate would tell the parents the sad reality that we face as a society (that most of the services that you may want to get for your child are still not funded either by the state or by private insurance), but would also know or be aware of resources that may be available to the parents in order to change that reality.
A cadre of advocates for autistic children (let's start with the children) would be just the thing needed in order for parents to relax just a little bit so that they could focus their energies where they really should be focused: on their child and the best treatments for their child. Families of autistic children face immediate and powerful vulnerabilities that most of us with "neurotypical" children never had to face. Wouldn't it be good of us as a society to help ease the wrenching dislocation of these families by providing such advocates? If this is the answer proposed for the returning veterans, it must be because there is a serious crisis in service delivery to them. The same can be said for families with autistic children. The time has come to put funding for such advocates in bills both federal and state. Families, and all of us, would be the better for it.