Impact Feature Issue on Stories of Advocacy, Stories of Change from People with Disabilities, Their Families, and Allies (1988-2013)

“The struggle to gain control of one’s home is something of a brave new world for people with disabilities.” So stated Impact: Feature Issue on Consumer Controlled Housing in the spring of 1990. In the article below from that issue, the Lockwood family talked about their journey to realize that new world for their daughters, Stacy and Druanne.

All good parents have a vision for their children’s future that includes the eventual building of a life of their own as adults independent of their mother and/or father. That vision sometimes has to be modified if a son or daughter has severe disabilities. In 1980, Audrey and Bob Lockwood of Minneapolis latched onto the idea that their two daughters could live in a real home of their own, independent of their parents, even though both women have severe mental retardation and physical disabilities. The process of making that idea a reality took the next five years.

Stacy and Druanne Lockwood once shared a five bedroom home with their parents. As the women entered their early 20s, Audrey and Bob thought that the house would be a perfect place for their daughters to live with other women their own age. In 1984, after encountering difficulty in implementing their plan due to changes in the law governing group homes, the Lockwoods were ready to give up on the idea. Their housing concept was categorized as a group home by the state, and a hold on funds to create such housing was in effect.

Then in 1985, Medicaid Home and Community Based (“Waiver”) Services came into the picture in Minnesota. Waiver services made it possible for the plan to be put into action by making available funding for staff to come into private homes and assist families. Interviews were conducted with various management companies, and one was selected. The director of the management company became a foster parent to the women to fulfill requirements for the home’s existence. Roommates were found among Stacy and Druanne’s coworkers at a developmental achievement center. And so, in the fall of 1985, Audrey and Bob moved out of the home, turning it over to their daughters, two roommates, live-in staff, and the management company.

During the first two years of the arrangement it was difficult getting the household to stabilize because staff turnover was high. That has slowed, and the newest staff member was hired almost three years ago. Three female staff live at the house with the four housemates. Two staff are at the house whenever the four women residents are home. At times when the Lockwood sisters and their roommates are at work, the staff are out at other jobs.

Just like any other home, each person has their own responsibilities and their own interests. Each housemate, with assistance from the staff, contributes to the housecleaning duties, meal preparation, grocery shopping, and meal cleanup. Currently all four residents work at a developmental achievement center; Audrey and Bob are in the process of moving their daughters to another center location because they’d like them to be able to interact with other people besides their roommates. Out of the home leisure activities include attending a weekly I AM HIS club at church. Other leisure activities are in-home with roommates or alone; Audrey and Bob would like their daughters to increase their social outings through involvement in evening group activities at least three times a month. This is a goal they continue to work on.

The arrangement has not been without problems. The Lockwoods are not completely satisfied with the management company. There seems to be a breakdown in communication from the company to the parents, leaving Audrey and Bob uninformed about some changes. And there is some dispute over home maintenance that isn’t being adequately handled by the company. Other management firms are being considered, but there is a problem in common with them all: the companies want the Lockwoods to hire a husband/wife couple to live in the home as a solution to the maintenance problem (the assumption being that a man is needed to maintain the yard and house). Audrey and Bob don’t want such a couple living there, in part, because that couple would take on the role of parent figures with their daughters. They want Stacy and Druanne to continue to live on their own with female peers, not second parents. If a satisfactory arrangement with a management company can’t be made, Audrey and Bob will consider moving back into the home. This option would, however, reduce their daughter’s independence and it is viewed as a last resort.

Whatever form the household ultimately takes on, Bob and Audrey remain committed to their daughters having a home of their own and living their lives in the community.

The interview for this article was conducted in 1990 by Christine Stehly of the Institute on Community Integration.