Institutionalization has always had a negative connotation. It evokes pictures of mistreated, neglected patients who are housed outside the public eye because of their inability to conform to social standards. This image was particularly heartbreaking for parents who were overwhelmed by their children’s needs and behaviors but still deeply cared about their futures. It was these brave and determined parents who insisted that there had to be a better way. As a result of their outcry and some strategically placed policymakers, the standard of care shifted from an institution-based model to a community-based model. In this new world, those with developmental disabilities could live, work, and recreate as a member of the community with an appropriate level of support and accommodation. This idea was not only more cost-effective but was an ethical imperative. Community-based agencies, most of them inspired and developed by parents, were created to meet individual needs and to promote independence.
Fast-forward to today. The voice of the national champion is replaced with local and state leaders who have little knowledge or commitment to the previous reform movement and are constrained by a difficult economic climate. Progressive system-wide improvements are at risk as state budget makers look for more “practical” solutions. The net effect, a movement back toward an institutional model. As those with disabilities enjoys the benefits of the advancement of health science, issues of aging and quality of life will have to be addressed. Who will rise to represent this population in the effort to seek pragmatic solutions that do not compromise the ideological roots of deinstitutionalization?