Natalie U. Rolider¹, Brian A. Iwata¹, Claudia L. Dozier², Steve Drago³ 

University of Florida¹, University of Kansas², The ARC of Alachua County³ 

Introduction/Background: In addition to having significant difficulties related to dietary and weight management, individuals with Prader-Willi Syndrome (PWS) often engage in problem behaviors such as self-injury, aggression, and property damage. When these behaviors become unmanageable at home, families may seek residential placement that offers specialized services to meet the needs of individuals with PWS. Very little data have been published on the outcomes of such programs. The ARC of Alachua is a community-based residential program comprised of group homes and semi-independent living arrangements that serves approximately 65 individuals with PWS. Components of a learning-based intervention program for individuals with PWS, designed in collaboration with the University of Florida, will be described. 

Methods: Individualized treatment plans for individuals with PWS are based on assessment of the frequency of problem behaviors and the environmental variables that maintain such behaviors. Instructional and contingency management approaches are taken to address three main areas of concern: dietary management, exercise, and severe problem behavior (aggression, property damage, self-injury, and food stealing). Treatment is based on the premise that these behaviors can be managed through arrangement of environmental conditions in which reinforcement is used to shape alternative and incompatible behaviors. Dietary and weight goals are achieved through controlled and supervised access to food and adherence to daily calorie allotments, with a focus on independent selection, measurement, and budgeting of calories. Participation in cardiovascular exercise is shaped through gradual increases in exercise program requirements. Initially, individuals are given the opportunity to earn additional calories for exercise adherence; however, as individuals achieve their exercise goals, calories are gradually faded and replaced by social reinforcers. Problem behaviors are addressed by arranging the environment to set the occasion for appropriate behavior, providing reinforcers for the absence of problem behavior, teaching appropriate alternative behaviors that result in access to social reinforcers, and withholding or preventing reinforcement following problem behavior. 

Results/Discussion: Outcome data on client gains across years will be presented: (a) individuals achieving independence in calorie budgeting, (b) individuals’ weight since admission into the program at 6-month intervals, (c) adherence to different types of exercise programs and current level of support required to complete exercise, and (d) reductions in problem behaviors.  

Conclusion: Intervention strategies used by the ARC-UF program have consistently produced reductions in weight and problem behavior. These effects are generally maintained, and individuals eventually transition to less-restrictive settings that closely approximate independent living environments. Current research is aimed at refining various aspects of the program through component analysis.  

Edited: 02/09/2012