By Shaun Heasley, May 17, 2016
Despite initial opposition, a new study suggests that many families of those with disabilities required to transition from institutions to community living are ultimately pleased with the outcome.
Researchers assessed the experiences of Oklahoma families whose relatives were part of a mandatory deinstitutionalization process when the state closed its last two large state-run institutions for individuals with intellectual and developmental disabilities in 2015.
At the time, all remaining residents were offered home and community based services waivers so that they could move to small homes with roommates where they would receive 24-hour care and supports in the community.
Within months of making the transition, 153 parents and siblings who had legal guardianship over individuals who had left the institutions completed a state survey about their experience. Subsequently, researchers with Oklahoma State University conducted in-person interviews with 23 of the family members.
Participants had family members who had been institutionalized for anywhere from 27 to 58 years before making the switch to community living, where they had been for one to three years at the time of the interviews.
Fourteen family members said they were initially opposed to deinstitutionalization, but were now satisfied with their relatives’ community living arrangement, according to findings published in the June issue of the journal Research and Practice for Persons with Severe Disabilities.
One man described his brother-in-law’s transition to the researchers as “the best thing that ever happened.” Another woman said “(we) wished we moved her 20 years ago” when asked about her daughter’s experience.
At the same time, however, five family members continued to find the transition troubling. They cited broken promises by state officials, with one woman reporting that when her brother came into the community “they had nothing for him to do.”
Whether or not they were ultimately satisfied with the transition to community living, however, family members agreed that certain elements were key. Chiefly, relatives felt it important to respect the history of their family member, ensure a collaboration with the individual’s siblings or parents, provide quality care and consistency, include the individual in the community and remember who’s family.
“Professionals may know the research and support the changes in practice and policy regarding deinstitutionalization, but families are often unaware and skeptical of community living. Family members need ongoing support as they adapt to community living and new service systems,” wrote Jennifer L. Jones and Kami L. Gallus of Oklahoma State in their findings.
Often, the researchers noted, deinstitutionalization changes family members’ responsibilities. In many cases, loved ones are located closer, allowing for more frequent contact and more day-to-day involvement in advocating for appropriate activities and relationships, they said.
“The emotion expressed by family members in this study highlights how significant changes, such as deinstitutionalization, affect all members of the family system,” Jones and Gallus indicated.