As one grows with the child and as the trip of life is unfolded, the special features become part of a collection of goodness and personal-ness that are your new child. When you reflect you can identify that that 47th chromosome has indeed made a difference but in the sum this difference has made an extraordinary human and someone for whom you could not have realized or anticipated the happiness and strengths that will be seen and felt. Parents tell me again and again how they have been unexpectedly rewarded and blessed by seeing with new vision. These babies have an unparalleled set of personal features that take us with them, open our eyes and fill our hearts. Perhaps one of the most profound experiences of a special parenthood is coming to realize that your old perceptions were too limited and that there is much waiting to be embraced. That extra chromosome becomes a ticket to some new warmth and features that change lives and change them well. Allen C. Crocker 12/25/25-10/23/11 (Schermerhorn, 2004)
Throughout history, health care professionals (especially doctors) have often acted in ways that are now clearly seen as being against the best interests of individuals with intellectual and developmental disabilities (IDD). In part, because of this history, there have been movements away from the medical model that included movements away from health care professionals (especially doctors); these movements were most prominent in the latter half of the 20th century. These movements have not only been led by individuals with IDD and their families, but also by other advocates and professionals and have led to a paucity of health care professionals (especially doctors) who self-identify as specialists in the care of individuals with IDD. These movements away from organized health care (especially doctors) have been one of the factors that contributed to the relative historical scarcity of research into the health of individuals with IDD, especially in the latter half of the 21st century.
This special issue of IDD has been created in large part because of the lasting legacy of Dr. Allen Crocker, who lived through those movements away from doctors. Due to the combination of his personal wit and ability to generate general good will, people did not move away from him. He was a pioneer in the area of improving the health of individuals with IDD, especially those with inherited metabolic disorders and Down syndrome. Throughout his career, he worked tirelessly as a clinician, researcher, policy advocate, teacher, and generally good man to all. He was a mentor to generations of individuals, many who are now the leaders of this field. His work was grounded on his vision that past outcomes, especially related to health, did not need to be a predictor of the future for individuals with IDD, either individually or as a population.
This special issue of IDD, like Dr. Crocker's work, spans methodologies, disciplines, and points of focus: from investigations into the impact of health care reform and Medicaid managed care for the healthcare of people with IDD, to predictors of institutionalization, to new techniques for patient-oriented research in IDD, to issues related to the aging of individuals with IDD (a relatively new phenomenon, and partly due to the successful work to improve health by prior generations of professionals), to issues of disparity in the health of individuals with IDD, and to legal aspects of dealing with increasing information related to prenatal testing. This special issue of IDD also points to the changes that are occurring in the 21st century, changes that Dr. Crocker advocated: namely, an increase in both the number and activity of researchers and clinicians who dedicate themselves to the work of improving the health of individuals with IDD. To the delight of the editorial team, the call for papers resulted in more submissions than could be included in this single issue. Therefore, subsequent issues of IDD will likely be sprinkled with more work in this field.
There are other signs of hope for researchers in the area of health and IDD: The National Institutes of Health has now created specific entities to address both Fragile X and Down syndrome specifically. The Centers for Disease Control and Prevention has a great group that is focused on issues of IDD. Private funders are also stepping up to support several different initiatives related specifically to health and IDD.
This special issue of IDD also highlights another area that was near to Dr. Crocker's heart: The education of all health care professionals (especially doctors) needs to include these types of articles. Frankly, medical education lags considerably in the inclusion of curricular materials related to the health of individuals with IDD (as compared to education or other professional training programs). None of the organizations that oversee medical education have mandates related to the education of future doctors about individuals with IDD. This must change. Health care systems disproportionally (versus most other systems in society) interact with individuals with IDD, yet these systems have almost no leadership who have been trained in the needs of individuals with IDD, either as individuals or as a group. Therefore, the next step for the field of professionals in IDD is to take these findings and help to ensure that they are included in the training of the next generation of health care professionals. That would certainly be what Dr. Crocker would do.