This is the third of several posts containing portions of my feasibility study looking at the need for an independent sexuality and social skills agency serving teens and adults with ID/DD and their supporters.
Another area that indicates the need for sexuality and social skills education is found in the breakdown of sexually based incidents reported to the DDPC. According to the DDS Quality and Risk Management Brief from May 2011, the results of an agency wide, voluntary staff survey and an assessment of the 2010 incident report, while sexually based incidents made up only 1% of reports during the year, 72% of those incidents were classified as “misbehavior of a sexual nature” rather than “aggressive sexual behavior.” Misbehavior of a sexual nature most likely means that instances like exposure and public masturbation. Aggressive sexual behavior can mean incidents such as assault or unwanted touching.
The report further elaborates that of the 42 respondents to the survey, 71% provide some type of sexuality and social skills education to some of the individuals they serve. In contrast, 7% of the respondents indicated that education was provided to all people with disabilities. The survey showed that 41% of training is done by certified sexuality educators. The percentages seem reasonably high and offer a promising look at breadth of provided sexuality education and its general direction.
With overwhelming evidence that sex is a very real part of the lives of people with disabilities, whether consensual or not, and the postulation that many incidents in which people with disabilities are the perpetrators of sexual missteps can be corrected, the focus is slowly shifting to preparation and education as necessary parts of abuse prevention and the promotion of whole lives. For some perspective in the above numbers, DDS employs 7657 people, over 6500 of who fall under the classification of direct workers—those who work in a close, face to face capacity with the people with disabilities served. This does not encompass any subsidiary agencies, such as Behavioral Health Network and the Seven Hills Foundation, each of whom employ over 1000 direct service professionals. Within the DDS umbrella, there are less than 100 certified sexuality educators. (Q&R Brief #4, Masslive.com)
Compared to the DDS employees, the respondents—from all of the provider agencies—represent less than .5% and certified sexuality educators represent less than 1%. Experience in the direct care field within DDS and as a certified sexuality educator makes it difficult to synthesize the percentages reported from the survey to the whole of DDS. In research conducted in an independent survey, respondents were more likely to be concerned about the way staff handled difficult situations regarding sexuality. In both surveys, more than half of the respondents stated that their agency did not have any formal sexuality policy or a system in place for assessment and referrals within the agency. The general consensus in the independent study, which was empirically shown in the Risk management survey as 55%, was concern that education happen only after a problematic behavior occurs.
The above factors—rates of abuse and assault, statistics showing sexual activity in people with disabilities, and indicators that lack of education and reactionary policy exacerbate these issues— show that the problem has some roots in the DDS organization. Agencies need to be firm in their support of sexuality as a natural part of whole life. Policies that essentially say, “we will deal with it when we have to,” do not support the people supported by the agency in a healthy and proactive way. By neglecting to foresee issues and head them off with education, the agency sets up its constituents to fail and puts them in harm’s way.