This is the sixth 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.
Those responding to the survey offered insight that aligned with the Q&R Survey referenced above. Some of the responses (to the question “What would you change about the way that sexuality is currently taught to people with developmental/intellectual disabilities?”):
“Make it more available from a younger age/more accepted/teaching parents too so that parents understand the risks of not educating their sons and daughters.
I feel that more opportunities around learning about healthy relationships is necessary for the population being served.
I would assess the sexuality education needs of everyone who uses DDS supports, and dramatically increase the number of educational groups available.
More focus needs to go toward staff and managers in helping them to realize that it’s not “taboo.”
I think what needs to change is that agencies and parents need to realize that people are sexual beings and have needs and those needs need to be addressed. Proper education is the only way to ensure that people are safe (pregnancy, STD’s, rape, etc.) and that they have appropriate sexual experiences (whether that is with a partner or not).
I would ensure that the basics are taught as early as cognitively appropriate, improve training for direct care staff, and if an agency has the resources, advocate for a sexuality trainer to be added to clinical teams.
It should be taught as a matter of routine, just as ADL (activities of daily living) skills are. However, there needs to be more thought put into WHEN it is taught, taking into consideration where the person’s interests and abilities are at the time. The current curriculum in most public special education is done by the person’s age, not his/her readiness.
I think we need to teach more. I haven’t been to any trainings where the trainers are teaching people with disabilities but I would definitely be interested in attending one to observe.
Access is the biggest issue. So, I would change its availability and accessibility. Currently, we have very few educators who can offer training on a fee-for-service basis, agencies are not prioritizing sexuality education within their own client group, and most educators have “real” jobs which are more than full time commitments, leaving little time to develop lesson plans and offer their services. I would eliminate all of these barriers.
To be more open about the topic, not shameful, reinforce that it is great to be learning about the topic.
I can’t say I have seen enough teaching to have a strong opinion about this –which may be saying something! I say I’d like to see it taught MORE! It seems like a topic that isn’t addressed “out in the open” as it (in my opinion) ought to be.
I would appreciate a base of information and guide to specific areas that should be included in running groups.
I would say that it needs to begin at the same time sex education starts for typical students. More people with DD/ID need access to sex education that is tailored to their needs and interests.
To start at an early age and to do a lot more of it as most public schools ignore it and there has not been any emphasis on teaching this to people with developmental delays. Start at an early age when they are in school. Also educate the public.”
The response is clear—there is not enough access and availability of education now, and that people would like to see sexuality education integrated into the everyday lessons provided in support settings.
When answering the question “What do you want for the future of sexuality education for people with developmental/intellectual disabilities?” the responses were not unreasonable:
“For all people with DD and for all staff to be educated to support them to have Relationship and Sex Education. A standard curriculum to be taught in the public schools and more clinical support teamed with educators to provide the highest degree of support and education to truly help people with disabilities develop their sexuality along with meaningful relationships where their emotional and or physical needs are met.
I was sex education for people with DD/ID to be mainstream and expected.
I want for all developmentally delayed individuals to be educated in order to make informed decisions regarding their health, safety and sexual choices.
Happy, healthy, open and honest sexual relationships for people who want them! I would like to see people in the field providing opportunities and education for people that truly empowers and supports their sexuality. This means not just “getting through” a quick sex ed class here and there. Instead we should be using the time and energy to find out what people really know, and give them the tools, knowledge and opportunity to discover their own sexuality.
Equal rights not just in theory but in practice.
I want it to be taught in everyday life to the people with disabilities. I would like families to not be afraid and to be open to teaching their children at an early age. Early education would be my hope
Decrease the taboo, improved training for staff in regards to GLBT choices, improved training for medical personnel in regards to sexuality issues with the ID population, and easily accessible resources for staff and individuals
It should be part of the criteria in all programs just like health is in the school system.
I believe it should be offered to every individual in a developmental appropriate approach.
I’d like to see everyone receiving the information and support they need in order to thrive.
I want more opportunities for education in this field tailored to serve this population. I feel that there are not enough opportunities at this time to provide this service and it is a very important topic to have knowledge about.
More public awareness of need: More people need to be aware of the need for more extensive training than is currently available through the special education programs in the school systems. Many people with developmental/ intellectual disabilities cannot “figure it out for themselves” with only the minimal factual education most of these programs provide. Also, the fact that there are people available to do training with adults remains a mystery to many of the professionals involved in developing the goals and services for adults with disabilities.
Available to EVERY person as basic as human rights training…opportunities for education throughout their life, not just a one-time session!
The same thing I’d like to see for everyone—an understanding of personal comfort levels and boundaries and an ability to express and enjoy sexuality (however that expression may be).
That it is a lifelong learning opportunity That people have more and better opportunities to learn from experience in their own lives on a regular basis That the people who control access recognize they need to get out of the way of learning That sexuality education become a regular part of the school program for “transition” age students, from AT LEAST 14 years on, and that the education provided be real life, experiential, geared toward helping them approach adulthood somewhat prepared for the rest of their lives That education is not seen as an end in itself, but as an adjunct and support for people in their pursuit of the ‘right one.’”
The desire for access and education being a clear deficit in the Massachusetts disability services system is clear. The lack of proactive educational support for people with disabilities is a nationwide problem, and like in the Sexuality Educators Network, small pockets of supporters are showing up to address the problems by offering their own classes and creating their own curricula, but are still largely unconnected from the larger network of educators.
In the Sexuality Educators Network, many of the educators are given the job of “sex person” as an adjunct to their already packed job description, and for many, the additional duties are a labor of love. Until recently, it was extremely difficult for sexuality educators who were interested in working independently from their home agency to provide education services had a near impossible time being paid. I, personally, ran into the same problem (which was part communication, part marketing and part lack of funding) and ended up co-teaching a six week course without pay.
In passionate human service workers, it is not unusual to see people putting their own wants, like the desire to be paid for one’s time and skills, aside to fulfill needs, like providing sexuality education to someone who has had an incident that needs to be addressed.
Recently, the regulations for Commonwealth of Massachusetts Requests for Response, the bidding system through which independent contractors can submit bids and be paid without the involvement of a provider agency, were changed to include sexuality educators. There is an thorough application process, but once an educator is approved, they will be able to be bill the Commonwealth directly for services. This is a step forward for educators and for the availability of sexuality education for people with disabilities, but there are still roadblocks in place.