What More Is Possible for Joaquin?
John O’Brien & Beth Gallagher
Partnership with Joaquin* and his family offers an opportunity to learn how to better support people with developmental disabilities to live in ways that they and the people who love them have good reasons to value, lives that express the human right to live in a place of their choice, enjoy community life and contrib- ute to the common good. He offers this opportunity because of the complexity of the supports necessary for him to thrive.
Policy focus on managing costs through planning and coordinating services can obscure the importance of partnership between those who provide support and the person and their allies. It can seem as if support is a standard commodity to be purchased and delivered as a business transaction. This paper corrects that view from Beth’s perspective as a supported living provider who has learned in partnership with Joaquin and his family for nine years.
System managers and providers who decline partnership with people who require complex supports typically do so because they fear the person and the uncertainty of trying another way. Family members who assertively and per- sistently call for better can stiffen managers’ attachment to more of the same. As a result a person is buried, often for life, in settings that congregate and control them as one-of-a-group. The person disappears into an impoverished, physically and chemically coercive routine.** Those who purchase and provide services lock in oppressive structures by avoiding opportunities to co-create tests of limiting assumptions about how to safeguard health, realize developmental potential, balance the costs and benefits of public investment, and seek meaningful com- munity participation.
Joaquin belongs to a family who have kept faith in his responsiveness to family, friends and freedom. They fortified their vision of a good life with him despite a long period of institutionalization*** which Joaquin continued to endure through more than three years of negotiation for personalized supports with a system committed to congregate care. His sister, Diana, researched better ways to un- derstand and respond to his impairments, recruited professional, community and legal allies, learned relevant bureaucratic procedures and persisted. Week- end after weekend, family members drove two hours each way to the Develop- mental Center to keep their relationship vital.
*** Joaquin spent 22 years in congregate facilities. Eight years in a Developmental Center, seven years in a group home and another seven years back in the same Developmental Center.