Preventing abuse of people with developmental disabilities

Many times I have seen articles or presentations with this or a similar title. When I first started to see this slogan being used by professionals and academics, I expected that the contents of the article or presentation would tell me how these tragedies– atrocities–could be prevented.

I discovered that the common meaning of the word “prevention” was not what the author or speaker meant. The usual contents of the presentations included a description of the incidence and prevalence of the problem, then a discussion of activities occurring after the fact.

What I want to do here is to discuss what can be done prior to an incident of abuse occurring. I have not promoted or encouraged the use of the term “prevention” for this aspect of abuse education.

About 26 years ago, I coined the term “risk reduction” to describe activities or actions one could do to reduce the risk of abuse. I believe this is a better alternative to “prevention” because I do not believe that abuse will ever leave the face of this earth. If it does, great, but meanwhile, what can each individual with a disability and their family members do to reduce the risk that abuse will take place?

Around the same time I started using the term “risk reduction,” I had been treating a family – husband and wife and her two children. Both of her children had been sexually abused by the wife’s father and brother, the children’s grandfather and uncle. They had reported this to the mother on several occasions, but she had not been willing to believe it, most likely because she had been sexually abused by them when she was a child.

One of her daughters was in the gifted programs at school while the other had a diagnosis of severe mental retardation. This daughter, Maggie, did not speak standard English, but had a language of her own that only her sister, Sarah, understood. I provided therapy to the two girls, as well as to the family to help them cope with this family tragedy.

We established new rules for the family, to protect the children from further contact with the perpetrators. As difficult as this was, both parents were committed to their children’s safety over and above the strained relationships that emerged. It is interesting that many family members in such circumstances prefer everything to appear “normal” when family gatherings occur, and ignore the obvious dangers such may present physically, and will surely present psychologically. This family, however, agreed that there would be no contact of the children with the grandfather and uncle until the children were 18 years of age, at a minimum. This no-contact agreement helped the children feel very supported by their parents, and gave them plenty of time to heal.

We did face the obvious problem, however, that according to statistics, the chances that Maggie might again be sexually assaulted or otherwise abused were extremely high. I felt that before terminating therapy, we should make a plan to help reduce either the probability of another assault being completed or ameliorating the outcome by helping Maggie have a plan of action in case she was victimized again.

First, we had to discuss how it was that there was opportunity for the abuse to occur. We discussed who is most likely to abuse, agreeing that it would be someone known to Maggie and/or the other family members, and who had a position of authority. We discussed how to recognize any signs that someone was doing something wrong, and helped the parents take any opportunity during their daily lives to have an open discussion on behaviors they observed, as to whether these seemed good or scary, positive or suspicious. We wanted to create an awareness of things people do and say that could signal difficulties. We also wanted to create within the family an open dialogue that could last over the lifetime. In other words, slightly changing the culture in the family dynamics to have the parents be “askable parents” of whom any question could be asked.

We developed some language cues about abuse. We also talked about the fact that perpetrators have a plan they will carry out, whereas most of us do not have a plan regarding how we carry out our daily activities.

We designed a plan to carry out in case Maggie was abused again. Because Sarah was able to interpret for her, the option to have Sarah help out was put into the plan. However, what if Sarah were not home or available when Maggie needed to tell her parent something? Using her verbal and behavioral skills, we designed a series of cueing options that she could use. These were practiced and honed as time passed.

We also had to acknowledge that if there were an attempt to assault Maggie, most likely she would not be able to get away…as is the case in most attempts we are told. What could we recommend?

I pointed out that there are only three time periods for which a plan could be designed: before, during, and after an assault. The above describes in part the “before” part of the effort. What to do during an assault? I taught her that many sexual assault victims cannot get away. But what she could do is become a human video recorder and try to focus on everything that could be recorded with her five senses. Also for her to repeat her motto as things occurred, “my power is after, my power is after.” (She also could have said “my power is now and my power is after,” or some variation that she and her family preferred.  The power of “now” would be to observe and remember details.)  Finally, for her to agree to any promise the perpetrator wanted to extract from her, such as “don’t tell anyone.” Such promises are to be made only to remain safe, but are to be broken as soon as safety is reached. So this is the “during” part.

What about after? After a sexual assault, she was to tell her mother immediately, using the communication process developed within the family. That was her part. On the part of the parents, they had a role as well. Their role was to listen, stay calm, then take action as soon as practicable such as calling the police. Further, if the assault were sexual, to make sure Maggie did not change her clothes, shower, or wash in any way until after a medical exam was completed. This was obviously a complete change in how the first assaults were handled. The family felt empowered with this plan. Maggie felt empowered.

Then they were given an instruction to practice this plan monthly…much like earthquake, hurricane, or other natural disaster practices are conducted. In part, to ensure that the skills were built up, strengthened and thus usable in time of need and in part to make sure that awareness of the dangers present continued, but were not a focus of daily life. The idea is not to live in fear, but in the strength of practical plans that are employable when needed.

The family then was discharged from treatment. The girls were feeling much better as a result of the therapy, and the entire family felt much better having addressed the problems that had brought them to therapy, and having a plan for the future that was realistic.

More than seven years later, I heard from the mother. She told me that earlier in the week, Maggie had been sexually assaulted by a new bus driver for her school. He had changed the routing, so that Maggie was the last child to be dropped off. After he delivered her to her home, she used her now well-honed communication skills to alert her mother to what had just happened. In turn, the mother used her practiced skills to listen, stay calm and take action. She called the school and the police.

When the bus driver returned to school, the police were waiting for him and arrested him. Maggie was elated that their plan worked so well. And, she had repeated her motto during the assault, as well as recalled much of what had occurred. Her mother had responded as planned, by listening, believing, staying calm and taking the appropriate actions. The family of course rallied around Maggie.

I asked if Maggie wanted to come in for therapy. The mother said, “Oh, no. Maggie wanted me to call you to tell you that the plan worked. She is proud of herself for how well she did when the assault happened. She used her language cueing and with me now understanding, it worked great. Maggie is so proud of herself. She understands that the assault was not about her as a person, just an easy target for the bad man. Instead of traumatized she is feeling empowered.”

I had not anticipated that having a viable plan would lessen a victim’s need for therapy, but I learned from Maggie that her planning and practicing created an empowerment that affected not only her well-being, but ability to be a good witness to the crime.

As I see it, there are only two kinds of people that must be included in any risk reduction plan: children or adults with disabilities, and those who help them. And, there are only three time periods to be addressed: before, during and after an assault.

However, each new “after” informs anew the next “before.” More is learned about oneself as a survivor, about perpetrators, and about improving planning.

This Risk Reduction plan has been developed now many times into what I have called an IRP, an Individual Response Plan. It follows all of the precepts of the PODER model described in the my guidebook. “Risk Reduction: A Guide for Individuals with Developmental Disabilities and their Families and Careproviders.”

This model works well for individuals with and without disabilities. It works well, because now there is a plan, one which works. So now, it is not only the perpetrator who has a plan…so do families including individuals with disabilities.