Things Are Changing

This excerpt is from Patterns of Supported Living: A Resource Catalogue. Along with our colleague Claudia Bolton, we wrote this piece in 1993. The predictions have held up, but it took about 20 years longer than we thought.

In about the mid-1980’s civil rights movement and consumer self-advocacy really started to affect the service system for people with developmental disabilities. That is, people with developmental disabilities started to advocate for themselves and to assertively express their preferences and choices about their own lives and the support services they were receiving. In the 1990’s, these voices have started to influence policy and practice at the federal, state and local level of service.

The Value Base for Supported Living Services

This shift in values that is so evident in current federal and state legislation has driven the effort to develop supported living services. It’s important to know about these shifts or changes in order to understand how supported living services are different from other services.

A Shift from Getting Ready to Choice and Support

People don’t get ready for supported living the way they had to get ready or prepare for more integrated living based on the continuum model. The basic idea of supportive living is that if a person wants to live in their own home, it’s up to the person, family, supported living program and others who care about the person to help him or her identify what they’ll need in the way of supports and services. Supported living services can be available to anyone over age 18 regardless of the nature or severity of the person’s disability.

A Shift from Living in Someone Else’s Home to Living in a Home of One’s Own

A condition of supported living is that people live in a home of their own. It’s important that the person’s name (not the supportive living program’s name) should be on the lease, rental agreement or on the mortgage. This practice separates a person’s housing needs from their needs for support. This power of the lease lessens the chance that people will be uprooted as their support needs change. The opportunity of supported living is to help people become rooted in their homes, neighborhoods and communities. In our society, having control of the lease or mortgage says this is my place.

A Shift from Professionals Having Power Over People with Developmental Disabilities to People with Developmental Disabilities Having Power

A shift of power to people with developmental disabilities requires that professionals let go of power. Supported living services require that professionals learn to share power with people they serve. Sharing power protects the right to choose where to live and with whom to live as well as a choice of supported living services and direct service staff.

A Shift from A Program Curriculum to Individualized and Flexible Supports and Services

Supported living services and supports are patterned differently for each person. Each pattern is, as Robert Perske would say, unique and unrepeatable. This method of providing services contrasts with programs based on the continuum model which often have a course of study or curriculum that everyone moves through regardless of their service needs. Supportive living requires a shift in thinking for programs and funding agencies from valuing time limited, measurable, instructional and behavioral goals to valuing the choices, needs, and satisfaction of people with disabilities.

A Shift from Independence to Interdependence

As we mentioned earlier, the developmental and continuum models were based on people moving in a step-by-step fashion with each step offering increased rights, responsibilities and independence. This model offered independence as the reward for increased competence. Independence from paid support and families was seen as the ultimate evidence of success or “making it”. What we learned from this model was that independence can be an isolating and depressing state of aloneness. What we missed in our efforts to help people live better lives was the importance of relationships and interdependency in all of our lives. Supportive living services value interdependence. The goal is not complete independence. Instead, the goal is to help people experience the interdependency or give and take of relationships within families, neighborhoods, and communities. Relationships that will support people in ways that everyone needs support, and offer friendships, and a sense of belonging, and feeling important and valued.

Where do You Stand?

Programs differ greatly in their support for supportive living and in their perception of who should be using the services. We all have to make up our own minds about what is right. The fundamental question we must ask ourselves is What am I about and what kind of community do I want to work hard for?

Excerpted from Patterns of Supported Living: A Resource Catalogue; Developed for the California Department of Developmental Services by Allen, Shea & Associates and Claudia Bolton, Napa, CA 94559, 6/93.