As a class, people with intellectual and developmental disabilities have a history of abuse and other forms of trauma including being ignored, actual neglect (emotional and physical), besides the other types of volitional abuse nearly all have experienced.

An awareness of this historical reality is is the foundation of trauma-informed practices:  trauma-informed care, trauma-informed therapy, trauma-informed service delivery, trauma-informed treatment planning, trauma-informed justice and trauma-informed politics.

It has been my experience, however, that the abuse and trauma experienced by well over 70% of the people with intellectual and developmental disabilities is ignored during discussions about them…regardless of the topic.  It can be advocacy, residential options, work and employment discussions, community integration, among others.  Why?

It has long been my experience that while professionals may seek information about abuse, parents and siblings do not.  They do not want to hear about the realities of abuse.  I recall one sibling who bravely attended a 3 day conference on abuse I had convened in the early ‘90’s…she only stayed for the first hour, and left.  She saw me as she was leaving and nearly in tears said, “I had no idea this was such a huge problem. I can’t stay.”  And off she went.

I not only convene conferences and workshops, but I am often called upon to conduct training programs for agencies across the country (and other countries).  My work specifically addresses abuse of people, children and adults, with intellectual and developmental disabilities.  When it involves professionals, direct service providers, and administrators of large public and private agencies, audiences range from 70 to over 500 people.  When it involves addressing parents, even though outreach efforts have been made, only a handful show up…and even then, they may not stay for the entire program.

Usually the program is of a positive nature.  I teach what can be done to reduce the risk of abuse and what can be done to heal the trauma of abuse.  In some cases, the lecture has been requested to discuss issues of abuse and sexuality:  how to educate one’s children, how to address the topic of abuse with one’s children, even how to discuss abuse issues with them.  In such cases, where hundreds of invitations have been sent out, typically there are under 10 parents who attend.  Yet, it is the parents who are the gatekeepers to safety for their children.

I do not know, yet, how to overcome the hesitance…the reluctance of parents to learn how to protect their children.  I believe in part it is “if we don’t talk about it, then it won’t happen.”  Yet, it happens even though one does not want it to.  And, when it happens, frankly, parents are not prepared either for themselves or their children, to respond effectively, that is, to know what to say, what not to say, what to do, what not to do, and how to comfort their child as well as take the necessary legal steps.

I don’t blame the parents at all, but, I do wonder about the professionals whose interest in the topic of abuse, and how to reduce the risk, is less than enthusiastic.  Avoiding the topic does not make it go away.  And when the topic easily slides away from their conscious awareness, that makes me crazy!  For example, in the recent reviews I have done with Tom Coleman of proposed legislation on medical decision making, and substituted decision making and supported decision making and guardianship…none of the bills have identified the holes in the process that allow for abuse to continue.  Why not?

Because, Tom explains to me repeatedly, people do not want to think about it. But, I argue to him, thinking about it is a lot less painful than having it happen.  Yes, but he argues, they don’t want to think about it.  I argue, but even though it is painful, one must face the facts!  He says, people don’t want to.  They are more comfortable ignoring the fact of abuse, and pretending that everything is hunky dory.  I say, “but they can’t do that!  It is their responsibility, their job to make sure abuse is addressed and effective strategies are planned to do all that is possible to ensure their well-being.” And Tom says, “but they do not want to face it.”  He explained to me that I have a keen and abiding awareness of abuse.  It is like having night vision glasses.  I said no, I think it is more like people putting on blinders so they do not see what is there to see.  I do not think I have any advantage over others, in being knowledgeable.  And so it goes.

Do advocates wear blinders because they do not want to think about abuse?  Or do Tom and I have “special powers” to see what I believe is obvious to anyone in the field?

This week on March 19, I led a seminar for parents on “How to Reduce the Risk of Abuse for Children and Adults with Intellectual and Developmental Disabilities.”  The program had been advertised to the parents who have children enrolled at a regional center.  Obviously there are hundreds of them.  One of the parents who attended said, “I really feel scared. I did not want to come, but then I thought I should. Maybe I can learn something that will help protect my child.”  I told her that she is brave.  The other eleven who attended included parents, care providers and regional center staff. Yes, 12 people attended.  This is typical.  And, yet, parents tell me that they think about abuse, and worry about it happening to their kids everyday.

Both parents and those who serve them, could have attended this workshop.  We could easily have taught over 1000 persons how to reduce the risk of abuse.  And how to reduce the impact of abuse when it happens, and many other things.  But, this cannot be done, when those who are responsible for children and adults with disabilities choose not to attend a program that addresses the problem.

So, I will continue to offer information, strategies that work, to those who wish to learn.  On the other hand, parents whose children have been abused, with whom I work, are extremely enthusiastic about learning strategies for “next time”  that is, to avoid “next time” if possible, and to be prepared, as they recognize that they were completely unprepared the first time around.  These are the biggest advocates.  Several have said that they want to teach other parents.  So, I am designing a Trainer’s Manual, to support them as they venture into teaching and supporting other parents.

I wish I could find the magic ingredient that would inspire parents to want to learn how to protect their children.  If anyone out there has the answer, please let me know.



Responsible Advocacy Demands Critical Thinking

Responsible Advocacy Demands Critical Thinking

I want to start this by telling you a little about me, and my thinking style.  I have always been a trusting person.  This, of course, has landed me at times in trouble!  I believe people when they talk to me.  I do not have a “little voice” inside at all times that says, “maybe they are not telling the truth.”  I don’t know why.  The trouble that has ensued from this trust, has been manageable although painful at times.  Non-trustworthy people have entered into my life, just like they have into the lives of others.  In response to being told I should be more suspicious, I really spent time thinking, “how could I become more suspicious?” and “do I want to become more suspicious — less trusting?”  and “what kind of person do I want to be?”  After a great deal of thought, I decided I did not want to change what I perceive to be a character trait.  I like believing in others.  I do not have much ability or skill in lying to others or even to myself.  I do not care to develop that trait.  I am willing to weather the times where the lack of trustworthiness in others has negatively affected me.

That does not mean, however, that I do not think about things, and analyze them carefully.  I do.  Sometimes when hearing or reading something, I wonder, “I wonder where they got that information?” and “what could be the source of that assertion?”  I look things up.  I ask others, “what does that really mean,” and “what is the source of that?”

Last year, as many of you already know, three different families asked for my help. Each of the families included an adult with intellectual and developmental disabilities who was involved in the probate court either already or about to become a Conservatee.  In each case, I did not know the answer.  I believed that the answers were to be found in a legal rather than psychological foundation.  I turned to the Legal Director of our Project for guidance.  In some cases, he did not know the answer either, and set about to look up the legal codes that would provide the answer.  In some cases, I turned to one of our consultants (Angela Kaufman) who is an ADA expert…the law, again!

I watched as Tom, new to the field of developmental disabilities specifically but not new to advocating for people with disabilities.  He asked, “where is that defined? Where is that documented? What is the source of that?”  We hosted a conference on Conservatorships, where I expressed my complete ignorance—borne of trust- of how the probate court works.  I had trusted that in court, the ADA, for example, was alive and well.  I trusted that the attorneys working on behalf of the proposed conservatees were doing so, with adequate and appropriate training, and finding trainings to be best at doing their jobs.  In the cases we had been called to assist with, I was wrong on all counts.  This is called a WAKE-UP CALL.  I have been awoken.  All in attendance at the conference agreed that they, too, had been trusting for three decades that the courts were operating as they should. And we were all wrong…at a huge human cost to the conservatees.

I recently reviewed the testimony of a parent-advocate to a legislative committee.  Her passion was evident.  But her “facts” were not facts at all.  In fact, some were complete fabrications, likely borne of her passion.  Her conclusion, that what she advocated would legally allow her child to make decisions about medical care when in fact that right would be removed completely.  Was she blinded by passion?  Did she not verify the information she had obtained?  Did she not question the source and its meaning?  Did she not “check it out” with others?  I think it is essential when doing advocacy, to check out what one is proposing/writing/discussing with others knowledgeable in the field.  For example, I have an Advisory Board for the Project to whom I regularly send materials for review and critique before sending them out to the public.  Doing so has invariably strengthened the documents I publish.

I am writing this, to encourage parents, paraprofessionals and professionals to employ the motto, “trust and verify” before stepping out on the ledge of advocacy.  Other mottos that help me include, “walk a mile in their moccasins” in other words, if it would be good for me, would it be good for the person for whom I am advocating?

I am encouraging advocates to use their critical thinking skills, and build those skills, to be more effective advocates.  I want to see advocates endorsing plans, proposals, bills, etc. that are well thought-out, legally sound, trauma-informed, and humane. I want advocates to be able to study “all sides” of an issue, and come out in favor of what works best for individuals with disabilities.  And that demands variety, as the needs and skills of people with disabilities falls into a big range, and accommodations to the needs of each individually matters.

Trust and verify.  Think it through.  Consult with others.  Think it through Trust AND verify.

Modify trust…for those who initially trust, that’s fine for your own personal advocacy, but when you assume advocacy for someone else, you cannot afford the luxury of “just trusting” others.  It does not require trust alone.