THE CRITICAL IMPORTANCE OF PERSONAL INVOLVEMENT

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 impressiveScott Center for Autism Treatment at the Florida Institute of Technology, where Mary Beth serves as Dean.  Here empirically supported, applied behavioral analysis treatments are implemented and rigorously evaluated.  We saw first-hand engaging interactions between those diagnosed with autism and their behavioral clinicians.  We also saw warm interactions among the clients.  When in graduate school in the mid-1960s, Pathad done a very comprehensive review of the psychology literature on autism.  At that time the primary focus of the researchers was descriptive and explored the types of families which might produce autistic offspring.  These were almost always highly educated, upper middle class Jewish families.  There was almost no research on developing effective treatment protocols.  The spontaneous interactions seen at the Scott Center would never have been predicted by the experts at that time.

            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 21^st century will require to provide high quality services and conduct cutting-edge effectiveness research.  Concerned parents will make all the difference.  Aloha,

 

Pat DeLeon, former APA President

Mary Beth Kenkel, Dean of the College ofPsychology and Liberal Arts, Florida Institute of Technology

 

Alabama Psychological Association – March, 2012

 

TIME KEEPS MOVING ON

Having decided to retire last Fall from the U.S. Senate staff after 38+ years, I have become increasingly interested in the journeys other colleagues have taken with their newly acquired daily/professional flexibility.  As a group, psychologists seem to be resilient folk, even though few had seriously thought about what they might do until the time to retire suddenly arrived.  The musing of a favorite mentor from my Ft. Logan internship days:  "Now, after 51 years as a practicing psychologist, I have again confronted the 'retirement' issue.  I even announced to friends that I was 'about' to retire.  Many were already retired, some for 25 years.  I began to stop taking new patients and just planned to finish with those lingering cases that were also not ready to retire….  I found that giving up what I liked to do and felt proficient at was not as attractive as others had found it.  So now, here I am, accepting a couple of new clients and enjoying it for now.  The challenge and good feeling is still there, so I am only semi-retired.  Thus, I can keep doing what I like and still play golf and travel.  And then there was the book that I was going to write – about the oft overlooked issue of differing life tempos from one person to another that are usually the basis for most human conflict and emotional illness.  No one's rhythm is 'right' or 'wrong' though many try to tell each other they are 'wrong,' hence try to change the tempo of another.  That is a truly useless effort in which many engage.  That too is another book in the direction of 'I'm OK, you're OK.'  Who knows, maybe one of those dictating programs like 'Dragon Speaks' or some such can help me over the hurdle of increasingly stiff fingers at the keyboard" [Jay Benedict].

Our nation's elderly population is steadily growing, providing new challenges and opportunities for psychology.  The Obama Administration's budget for the coming year notes three health professions shortfalls identified by the Institute of Medicine: 1.) The health care needs of older adults will be difficult to meet by the current workforce.  2.) There will be severe shortages of geriatric specialists and other providers with geriatric skills.  And 3.) There will be increased demand for chronic care management skills.  With visionary leadership from APA, psychology has been deemed eligible for support under several initiatives which are to increase the supply of quality, culturally competent geriatric clinical faculty; retrain mid-career faculty in geriatrics; and support career development in academic geriatrics providing training in clinical geriatrics, including the training of interdisciplinary teams of health professionals.  For many of our colleagues, this will represent a fascinating new frontier.  Former APA Congressional Fellow Greg Hinrichsen worked during the 2007-2008 Session of Congress with the Senate Special Committee on Aging, already having 25 years of experience in the aging field.  He helped craft legislation for a Medicare demonstration program, the Independence at Home Act, providing a new model of coordinated care for chronically ill Medicare beneficiaries.  End-of-life issues were also part of his portfolio with U.S. Senator Ron Wyden, for example hospice benefits and a joint Senate-House resolution on advance directives.  "Being on Capitol Hill was especially meaningful since I was a Senate page as a teenager – an experience that was transformative.  In the same way, the APA Congressional Fellowship has been a pivotal point in my professional life leading me in new professional directions."  We would only add that it is an experience which everyone should consider.  "You better keep truckin' on….  Whoa yeah!"  Aloha,

 

Pat DeLeon, former APA President – Colorado Psychological Association – March, 2012

 

OUR NEWEST ADVENTURE

  Having recently retired from the U.S. Senate staff after 38+ years, I have been quite interested in the experiences of colleagues who have also embarked upon a similar journey.  Responding to the suggestion made by Gene Shapiro that: "If you possibly can, never retire!" long time State Association advocateMike Sullivan proffered: "To each his own.  I have a very different take on retiring meaning having productive goals to accomplish.  For me it's meant a whole new horizon of productivity in direct community service (volunteering)!"  Over the years, we have come to appreciate that for organizations such as our state associations to be truly effective, they must develop a community presence and a sense of mission beyond that defined by ongoing day-to-day struggles.  Those who are members and those who wish to be of assistance (i.e., legislators and administration officials) must believe that ultimately society will be well served by their success.  For we should not forget that this is why they originally decided to become public servants.

            I still recall the 2005 "Heads Up Kentucky!" presentation at the annual Practice Directorate State Leadership conference.  It was meaningful and very impressive.  The Obama Administration has crystallized for the nation the current public health epidemic of obesity, with its economic, social, and health care costs.  For children this is a particularly serious problem as it ultimately will affect the quality and longevity of their adult lives.  Almost 10% of infants and toddlers carry excessive weight for their length and slightly more than 20% of children between the ages of two and five already are overweight or obese, according to the Institute of Medicine.  A wide range of environmental factors (including psychological factors) influence a child's risk for obesity in the first years of life.  Over the past 20 years, Americans have reduced their physical activity and the Institute of Medicinealso found a decrease in sleep duration across infancy, childhood, and adolescence.  Both factors (as well as diet) are increasingly viewed a risk factors for obesity at all ages.

            The HHS FY' 2013 budget highlights that health centers (FQCHCs) will serve 20.9 million patients this year with 38% being uninsured.  Envisioned under President Johnson's Great Society era, for decades these centers have truly been our nation's ultimate "safety net" for millions of Americans.  Today there are over 1,100 Centers with 8,100+ service delivery sites.  Behavioral health is becoming increasingly important, especially as society considers the all important psychosocial-economic-cultural gradient of "quality care."  The President's vision provides a high priority on ensuring access to quality primary care for all Americans.  With so many exciting opportunities for psychology to meaningfully contribute, we would rhetorically ask:  Do our State Associations appreciate the critical importance to their very survival of providing proactive leadership in involving their members in these two far reaching agendas?  Aloha,

 

Pat DeLeon, former APA President – Division 31 – March, 2012