Horror stories started coming out of these institutions..it started trickling out at first..then the stories came out more regularly. Reports of abuse, led to the understanding that traditionally, signs and symptoms of abuse in people with developmental disabilities were not effectively documented, assessed, or treated. Preconceived ideas like institutionalization, lack of creative communication and technologies, and limited self-determination influenced the commonness of abuse.
Reports of abuse are prevalent in today's society: Pick up a newspaper. Watch the evening news or an afternoon talk show. People agree that abuse must stop. Again, historically individuals with developmental disabilities have been treated with less concern than most people. Studies suggest an increased risk of abuse in persons with developmental disabilities, especially if they have been institutionalized. Abuse ranges from overt physical attacks to more insidious forms of intimidation and neglect.
Emanuel (not his real name) was a 28-year-old man with developmental disabilities, had been in an institutionalized setting all his life. His parents who were aging realized that Emanuel was miserable in this institution and required urgent attention. After research, they approached the State Of Maryland Health and Mental Hygiene for a suitable alternative. After a long wait, Emanuel was taken in by Center for Social Change, a non-profit organization based in Elkridge , Maryland. The center had been in existence for 15 years and had the distinctive reputation of handling such cases.
After a careful read of Emanuel's history and a comprehensive assessment of his functional behavior patterns, a team of in house behavior specialists, psychiatrists and nutritional experts at Center for Social Change put together a plan of tackling Emanuel's problems head on.
The team had immediately discovered that the staff at the institution worked varied schedules and often did not stay with the job long. Emanuel had possibly come in contact with ten or more different staff in a year, making continuity and predictability of meeting his needs and getting to know him a difficult task. Also the multiple bruises on Emanuel's body clearly pointed to the fact that either Emanuel was hurting himself or was a victim of abuse." When he (Emanuel) first came to us, we realized that he needed help right away, " said Dr. Joseph Mathew, founder and CEO of Center for Social Change. " He was suffering from mal nutrition, behavior tantrums and mood swings."
Emanuel was housed in a home run by the Center for Social Change in a community setting. He was monitored 24 hours by Center for Social Change direct care staff for Emanuel if left alone could not adequately care for himself. Emanuel had a long history of aggressive behaviors, hitting and kicking people when frustrated. Although he could make several sounds, Emanuel did not form words. Infrequent gestures, some sounds, and changes in his facial expression or behavior gave his direct care staff clues to feelings and thoughts. Individuals with developmental disabilities have varying abilities to communicate; a lack of verbal communication does not equate to a lack of comprehension. Asking Emanuel about his feelings and thoughts gave him an opportunity to try to communicate in another manner about what was happening. Slowly, Emanuel's behavior showed signs of a subtle change. Emanuel was encouraged to help out with household chores, occasionally going to the movies or out to dinner.
A few years later Emanuel was seen rocking back and forth to the music being played during a Christmas celebration at the Center for Social Change, a wide grin on his face. Emanuel had gained weight and his aggressive behavior, almost a rare occurrence.
" Caring for individuals like Emanuel is not easy. We need a lot of patience and understanding. We indoctrinate our direct care staff with these thumb rules and provide them comprehensive training to this effect," informed Dr. Mathew. " Each individual has their own problems...so the treatment and care also has to be individualized. We need to guide them, love them and make them feel wanted and provide them with the requisite tools in order for individuals like Emanuel to become as independent as possible." Dr. Mathew added.
The success of Center for Social Change did not go unnoticed. The Governor of Maryland recently recognized the contribution made by the Center in caring for individuals with developmental disabilities and declared by proclamation November 8, The Center For Social Change Day.
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