Thoughts from a Half-Century of Providing Disability Services
I recently conducted an interview with my mother, Alice Marshall, Grafton’s Case Management Supervisor for the Richmond Region, to learn more about her experiences in the disability services arena and her perceptions about what has changed and what has remained the same. It was an enlightening conversation.
Alice realized the direction she wanted her career to take when she attended a lecture by a physician who worked at a training center for individuals with disabilities. She remembers seeing pictures of the clients at that site, hearing stories of their successes, and observing the passion and love with which the physician spoke about her patients and her work.
That fit in perfectly with Alice’s own background, values, and sensibility. She had been reared in a family who embraced the credo: “…those who have assets and abilities have the responsibility to share with others who are not as fortunate.”
At that time, the disability field was beginning to move away from a philosophy of providing custodial care to one of providing support and instruction, in order to promote learning and improvements in functional autonomy. The philosophy of intervention in those days, however, was strictly behavioral. Every behavior that had been learned could be unlearned. Internal states, such as anxiety, pain, hunger, fear, depression were all but discounted as having any role in affecting an individual’s functioning. Interventions were based purely on changing the stimulus-response interaction.
Alice’s first position in the field was at Dr. Sidney Bijou’s Child Behavior Laboratory, University of Illinois. Dr. Bijou was an early pioneer in applying behavioral strategies used to modify the behaviors of animals to the learning and behavior change process of children with disabilities. Many of his findings are the foundation of current best practices in the field.
At the lab, Alice taught a half-dozen children, age five or six, who had been expelled from kindergarten due to behavioral difficulties. In most cases, they had intellectual and developmental disabilities. A second-floor balcony enclosed behind one-way mirrors overlooked the classroom. Graduate students were assigned to specific children and observed their behavior through the mirrors. They would then provide direction to the teacher about how to interact with and respond to the children’s presenting behaviors. The behavior plans were highly individualized and included constant positive reinforcement: verbal praise, tokens, tangible rewards, or affection were given as often as once every two seconds. Attention was stringently withheld for undesired behaviors, and reinforcement resumed immediately with the return of desired behavior. The children made exceptional progress.
During the interview, Alice described several of the cases from her time at the Child Behavior Laboratory. One particularly rewarding case involved identical twin four-year-old boys, whom we will call “John” and “Jake.” As with many identical siblings at that time, the boys usually wore the same clothing, had the same haircuts, and were treated in a similar manner by other people. When one boy’s name was called, both boys would respond. When one boy wanted something, the other boy wanted it also. They interacted with the world as a single unit.
It became quickly apparent, however, that although the two boys were physically identical, in other ways, they were not. Jake had significant developmental issues, but John did not. The challenge for the team was to create individuation between the two boys so that they could see themselves as separate entities and maximize their own developmental potential. Through intensive reinforcement of individualized activities and responding to his own name and directions, John began to identify separately from Jake. He corrected people who intentionally called him the wrong name, assertively stating, “My name is JOHN.” Over time, he became increasingly involved in more challenging developmental and educational activities and moved onto an age-appropriate developmental path. Jake continued to need significant support.
Alice has worked in a number of settings since those early years, and during that time, she has seen many changes in treatment philosophy, particularly in the reduction of restriction practices such as seclusion, time-outs, and restraints. She has also seen an evolution in community integration. Earlier in her career, individuals with disabilities were placed in institutions and rarely left the grounds. That’s much less true today.
When she came to Grafton, Alice found herself “…delightedly touched and surprised by how benevolent and supportive” the environment was. She was particularly struck by the way in which staff interacted with clients—an approach Grafton has since come to call “comfort versus control.”
So in the end, how does she feel about all the changes she has seen over 50 years in the disability field? “Terms, philosophies, approaches, professions change,” she says, “but our motives have been consistent in trying to enhance behavior, independence, and learning. No matter what terms you use or what teaching method or intervention you espouse, it ultimately all boils down to the importance of relationship and trust. With a solid trusting relationship, change is always possible.”