PDF1 - University of Maryland School of Law

Statement of Commissioner Robert A.DestroIt should not have been this difficult. The point,after all, is a fairly simple one: that it is both illegaland immoral to deny necessary medical care to anychild, especially one with a disability. That it hastaken the Commission nearly 5 years to complete itsreport and recommendations bears witness to theformidable political and practical hurdles which hadto be overcome. But overcome they were, and as theChairman of the subcommittee responsible for producingand editing the several drafts of the reportand recommendations, I am both pleased and gratefulto the Commission and its staff for the hard work,late nights, and commitment to seeing this projectthrough to completion.* I write separately tosummarize some of the practical and political issuesthe Commission had to overcome in the course of itsdeliberations, and to suggest a wider context inwhich this report and its recommendations should beviewed.Defining the Problem: Discrimination,Medical Ethics and Family PrivacyThe primary conceptual and political problemfaced by the Commission has been to distinguishamong those issues which are correctly within therealm of antidiscrimination and child neglect laws,those which are properly matters of medical judgmentor ethics, and those which are matters ofparental choice. Though the dividing line which* Special thanks go to my friend and colleague CommissionerEsther Gonzales-Arroyo Buckley, for her work as the othermember of the subcommittee, and to my former confidentialassistant, Deborah Lawrence (now of Fort Wayne, Indiana),whose hard work and persistence were largely responsible for thecompletion of the hearing record. It is also appropriate torecognize the contribution to the finished product made by theseparates these spheres is far from clear, it is quitereal; and the need to make careful distinctions iscritical.It goes without saying, for example, that neitherchild abuse and neglect nor discrimination on thebasis of disability are "private" matters. That aparent's decision to neglect a child's medical needs iseither influenced by or acquiesced in by a physicianlikewise does not transmute the issue of neglect intoone of medical judgment, ethics, or confidentiality.The proper (and limited) concern of law is theprevention and punishment of antisocial activity.Medical neglect (that is, the denial of medicallyindicated treatment) of the physically or mentallydisabled is, by definition, antisocial, and the properconcern of the law.The question addressed in this report is simplystated: is it permissible under either State or Federallaw to deny necessary medical care to any person onthe grounds that a disability or other immutablecharacteristic such as race, sex or ethnicity makesthat person an unfit subject for treatment? Phrasedanother way, the question is: whether medicallyindicated (i.e. necessary) treatment for a givencondition becomes any less "necessary" when thepatient has a disability?That this is the issue cannot be doubted. Thephysician who treated Bloomington Indiana's BabyCommission's late Chairman, and the original chair of thesubcommittee, Clarence M. Pendleton, Jr. Though Penny and Ihad many a late-night disagreement over the what we might findin the course of additional hearings, he supported additionalfactfinding. In addition, he also resisted internal and externalpolitical attempts to kill the project outright.207