Over the years, we have been extraordinarily impressed by the ability of concerned citizens, and particularly dedicated parents, to fundamentally alter our nation's domestic priorities. It has been our observation that the agencies and elected officials which they would reasonably expect to address the needs of their loved ones frequently come from a different perspective and thus with different priorities. Without the continued and persistent involvement of parents in the public policy/political process, the pressing needs of their children and family members would most likely remain unaddressed. Having been involved in, and students of, the public policy process over several decades, there are numerous examples which readily come to mind. For example, the parents of children with physical and mental disabilities succeeded in ensuring that they would have access to quality education and public transportation, notwithstanding very real budgetary constraints. Similarly, those dedicated to having appropriate educational environments established for their "gifted and talented" children during their formative years revolutionized the national debate on the role of education in our society. And, it was concerned parents who were instrumental in encouraging that relevant programs be developed for loved ones diagnosed with chronic mental disorders, as well as "acting out" teenage youth.
On a personal level, it was very satisfying for us that the Fiscal Year 2013 budget for the Department of Health and Human Services included $21+ million to continue its efforts to ensure that emergency medical services for children (Pediatric-EMS) will truly become child-centric, rather than allowing overworked hospitals to continue treating children as "little adults." This initiative began in the early 1970s, as a result of a hospital emergency room experience of one of us, for a daughter less than one year old. Children have their own unique needs and strengths which must be addressed in order to provide true "quality care." In each of these situations, we are acutely aware that the parents who chose to become involved had to overcome seemingly unending bureaucratic resistance and at times outright opposition from those vested in the status quo. In the long run, they definitely did make a difference.
It has been our observation that those programs developed for patient populations which are fundamentally in need of behavioral and psychological services have historically been administered (including establishing budgets and hiring patterns) by individuals who possess backgrounds in finance, business, and law more often than one might expect. This is especially true where legislators set annual programmatic budgets and where third party payers decide what clinical services to cover. When clinicians assume this responsibility, they unfortunately often do not possess the critical developmental and/or holistic perspective. By definition, there never will be sufficient resources to meet all of society's domestic needs. Trade-offs are required. Programs targeting children who have been diagnosed with autism are expensive and require specialized clinical and educational expertise. The reality is that any specialized or intensive program will utilize precious resources which could serve a greater number of individuals with less intense symptoms. There is no simple "correct" answer for what is "best." It is a matter of personal values and perspectives. And, being involved.
Last year we toured the very impressive
Today, with the increasing incidence of autism spectrum disorders, families are regarded as critically important contributors in the treatment. While trained professionals provide diagnoses, develop treatment plans, and work intensively with the children in centers or schools, to be effective, the behavioral interventions must also be applied consistently in the home. That job is assumed by mothers and fathers, and increasingly by grandparents and other relatives who step in to support and relieve the parents in this demanding role. By observing first-hand the challenges of raising a child with autism, and the gains that can be made through intensive early intervention, this supportive "village" of parents, grandparents, relatives, friends, and neighbors also become vocal advocates for funding for treatment, inclusion, and support. Nothing is more compelling to legislators, school board members, state and federal program directors, insurance providers, and other policy makers, than the stories and appeals of those who have first-hand knowledge of, and personal involvement in, the growth and development of a child with autism.
This direct involvement of families in the public policy/political process is needed to ensure that their children will remain a high priority on both the local and national level. Furthermore, professionals and parents working together can make certain that autism funding is directed in productive ways. While parents convincingly articulate the need for services and advocate for society's responsibility to this group of children, professionals can describe and demonstrate how their empirically-based interventions are effective in making real and meaningful improvements in the lives of children and their families and in reducing the need for more intensive care (and funds) in the future. Advocacy by parents and professionals that describes a tremendous need together with a demonstrable solution is a potent combination.
Over the years, those who have been truly effective in shaping our nation's priorities have demonstrated vision, personal commitment, and persistence. Change takes time; often much longer than one might initially expect. Personal relationships dedicated towards a meaningful goal are critical. We would finally suggest that one element required for ultimate success is developing the necessary highly trained health professions workforce which the 21st century will require to provide high quality services and conduct cutting-edge effectiveness research. Concerned parents will make all the difference. Aloha,
Mary Beth Kenkel, Dean of the
