Consumers Have Spoken

This article was written by Peter Bisbecos, the Indiana State Director for Caregiver Homes.

People have been driving the evolution of social services for decades. Community-based services are the leading edge today because of successful decades-long demand by those who received services.

Our nation's history in this arena begins in 1773 when the first person entered Williamsburg's "Public Hospital" intended to serve people with mental illness. This facility represented the best care possible at the time, and a service-delivery model that prevailed for almost two centuries. By the 1950s, many parents of children with serious disabilities realized the many advantages of community/family care. They rejected the institutional model, opting instead to form what have become today's community organizations. Their actions show a realization that the height of compassionate care was shifting from institutions to the community. Today, many of those organizations continue to be in the forefront of life in the community. A movement started by the Colonial Governor of Williamsburg in the 1770's was evolving into a parent-driven, grass roots campaign.

There are many high points in this history, but I would argue that the next big step occurred in 1981 when the Social Security Act was amended to allow Medicaid Waivers. This dramatic development provided states with a waiver of the requirement that Medicaid money be spent on institutions so that people could be served in homes in their communities. Successes from this change and others set the table for a 1992 Americans with Disabilities Act (ADA) regulation requiring that people receive services in the most integrated setting appropriate.

In 1999, the US Supreme Court handed down Olmstead v. L.C., sustaining that regulation and setting the stage for even more dramatic changes. The question Olmstead left unanswered was who, and how many, people needed institutional care? This question had to be answered before the next major step forward. After ten years of gathering evidence, the United States Department of Justice (DOJ) appears to have reached the conclusion that very few people need institutional care today.

In November 1999, the DOJ announced an Olmstead enforcement campaign that is driving the closure of many large institutions in favor of community service systems. States are closing institutions that once represented the best care imaginable. Today, more seniors and people with disabilities or mental illness are living fulfilling lives as members of their communities than ever before.

Structured Family Caregiving is a cutting edge model in the newest generation of community living. Not so long ago, it would have been hard to imagine that someone could live with their family, or in family-like arrangements, with the kind of training and support that Caregiver Homes provides. As a student of the evolution of community services, I am excited to watch these changes and bring this important service to Indiana.