Where are the advocates?

I hear people say that they are “advocates” all the time, and they work for an agency advocating for individuals with intellectual and developmental disabilities.

So where are they when the rubber meets the road and a need is there?  Life and death. Social servitude. They may have uninformed attorneys representing them, pretending they know the law when they don’t…and are not looking things up to make sure their belief is supported in law.

Yesterday I went (for the second time) to a recognition and appreciation of the work and music and life of Pete Seeger.  It was just amazing. The “house” was full, and it was a genuine gathering of people who appreciate and celebrate the freedoms promised in the constitution and who have been involved in the protests when these are denied.  Peter Alsop and his wife Ellen Geer run the Theatricum Botanicum where many wonderful programs of music and theater are produced.  This was built in the 40’s and beyond by Ellen’s dad and mom, Will Geer and his wife Herta Ware. Gerald Rivers gave a moving performance by delivering Martin Luther King Jr.’s “I Have a Dream” speech. I was in tears.  The audience was riveted and brought to their feet as they gave him a standing ovation.

This caused me to remember my early days learning about injustices and being involved in efforts to right them.  When I was sixteen I worked with the “braceros,” informing them of their worker’s rights.  That’s when I was shot at the first time.  When I was seventeen I worked in Mexico with impoverished townspeople and built a shower (yes, I did!), and helped build a library and taught English. When I was eighteen I went to jail in Torrance when Don Wilson’s housing tract would not sell to blacks…probably any non-whites.  In jail, we sang, “We Shall Overcome.”  Brother and Son led us in singing, “Where Have All the Flowers Gone?”

Today, I am wondering, “Where Have All the Advocates Gone?”  We know where the flowers went.  Where are the advocates?  Fighting.  Taking personal risks. Going to jail.  Going face to face with those who deny the rights of others?  Did the advocates get lost in bureaucracy?  Is a job more important than violation of rights?

Here’s what I was thinking.  Over the past forty years, I have been advocating for the rights of people with intellectual and developmental disabilities…and others, too.

However, the universe brought into our offices, three cases.  These cases have brought us an awareness of areas of injustice of which I had been completely unaware. How embarrassing!  What a miss.  How could I have missed it? Turns out I was not alone.  However, having now become aware, and having produced several informational conferences on the topic, guess what?  We are still alone!!!!  The agencies and the individuals in advocacy agencies, and those with a legal mandate to protect the rights of those with I/DD are not jumping in to right the wrongs that we have discovered, illuminated, and publicized, along with recommendations for how to implement corrections.

Three cases came our way.  In one case, a woman emailed me about her brother-in-law. She reported that he was being physically, emotionally, and sexually abused by his conservators/parents.  She had called Adult Protective Services to come investigate.  Apparently, they only interviewed the parents, and did not interview the victim or those who filed the complaint.  They came out three times, but never interviewed the victim, according to the caller. There was an identical experience with the Sheriff’s Department. Six opportunities missed. This was over the fourth of July weekend. The next working day, I called Disability Rights in Los Angeles, thinking they could get an investigator who would interview the victim.  I was told that I would “soon” get a call back to “open a file.” That was the beginning of July 2012.  We contacted the Board of Supervisors.  They were able to cause both APS and the Sheriff’s department to actually see Mickey.  He was emaciated, bruised, and asking for their help. The paramedics transported him to a local hospital where he was admitted and stayed for ten days.  I spoke to the Regional Center where the parents/conservators had previously closed his case.  I was told they could not talk to me. I said that was just fine, all they had to do was listen and say “OK” every once in a while to let me know that they had heard and understood what I said.  Regional Center went into action, although their hands were tied due to the conservatorship.  But, as I understand it, they did what they could legally.  APS notified the probate court and a court investigator made a report…but apparently never came to the house to visit with Mickey away from his parents.  The caller prepared a room in her house for Mickey, so he could live with her and her husband, Mickey’s brother.  But, APS did not talk with them, and thus did not know that, and returned Mickey to his parents, only ten days after hospitalization.  Within six weeks, he was dead.  Upon learning of this tragic outcome, I called Disability Rights in Los Angeles.  When I said what I was calling about, I was told that they were planning on calling “soon” to open the case.  I said, “Nevermind, he’s dead.” I hung up.  Over 10 weeks had passed, and so had Mickey.  Within the hour, I received a phone call from Disability Rights California, in which I was told that I “should have” contacted their office.  I guess calling the local office for help is not the thing to do.  But, how would I know that, when they promised to get back to me?  I know now.  But, it is too late for Mickey.

Mickey’s case opened our eyes to multiple system failures.

As fate would have it, soon thereafter I was contacted by the mother of an adult with developmental disabilities. His case had already proceeded through probate court, and paid conservators assigned to him.  However, the court was treating his case as if it involved a child!  The court was ordering “visitation” with the father!  For an adult!  In our country, as adults, we are guaranteed freedom of association (First Amendment), which means, as adults we can choose with whom to associate, and whom to avoid. Lots of people choose not to spend time or communicate with family members for a multitude of reasons.  And we have that right…wait a minute…who is “we?”  Well, obviously not this young man, where the judge must believe that the constitution is not applicable or available to people with disabilities!!!!!  The mother called on us, after having contacted thirty—yes thirty—advocacy programs, agencies and organizations who say they advocate for the rights of individuals with disabilities. None would help her help her son.

Then came the third case. As if the first two weren’t enough to send us into action (which they did), here came one more, illuminating additional and egregious failures in the conservatorship process.  Not the law as written, but how the system operates – without monitoring from any quarter. I remember in school learning about the balance of power, with the executive, judicial and legislative branches having monitoring and oversight responsibilities to make sure things turned out the way it had been intended.  But, to our surprise, the probate courts operate without oversight from any other branch of government, or from any entity whatsoever.  This is where the proverbial rubber meets the road.  The court is where laws are implemented…or so I thought.  Again, I was wrong.

In this case a proposed conservatee was represented by a court-appointed attorney.  Silly me, I thought that attorneys were required to be experts in their chosen field of work.  Silly me, I thought that attorneys had a personal if not professional code to be educated in the work they chose.  Silly me.  Well, it turns out, I was wrong, wrong, wrong.  The attorney for this case was asked by the mother of the proposed conservatee if her son could still vote even though conserved.  The attorney said to her, “voting would not be consistent with a conservatorship case.”  Really? Any right to be removed must be done with a showing of clear and convincing evidence that the individual does not have the ability to exercise that right or power.  The attorney had not developed any evidence on the issue of voting. He had simply assumed that his client did not have the capacity to vote.  Nor, by the way, did he allow his client to use his communication device when interviewing him…oh, no, he wanted his client to “just talk to him”  as if that were possible.  He did not file a request for communication accommodations for his client. In fact, the attorney did not know about (nor seek to learn about) such matters.  In fact, he violated his own client’s confidentiality by forwarding to opposing counsel the Americans with Disabilities Act application form for accommodations that we sent to him.

When we learned of these cases, and what they portended in terms of the failure of the legal system, we went into action, each time.  We conducted legal research, attended legal trainings on the topic, spoke with multiple individuals in the conservatorship system including judges, attorneys, etc.  We attended training programs.  We wrote about our findings.  We asked others to join us.  We asked MANY others to join us.  One agency so far has done so, the Arc of California.

Where have all the advocates gone?  Gone to flowers, every one.  Where have all the flowers gone?*


*For those who are not familiar with “Where Have All the Flowers Gone?,” it is a song that was written by Pete Seeger in 1955 with additional verses later by Joe Hickerson in 1960. It was based on a Russian (Ukranian) ballad, Koloda-Duda, referenced in the Mikhail Sholokhov novel And Quiet Flows the Don (1934).  In 2010, the New Statesman listed it as one of the “Top 20 Political Songs.” Check out a performance of the song at:  https://www.youtube.com/watch?v=rvivFT9MoX4.




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.

Hyperbole does not help

There are now many projects entitled “End Abuse.” For Domestic Violence, Teen Crime Victims, People with Disabilities, Child Abuse, Elder Abuse, Sexual Assault, etc. Really? End violence. End violence NOW. These are all the headlines, mottos, project titles.

Yet, I think, when I was a child reading the bible, it talked about the kids of Eve and Adam, and one killing the other. If this is true, violence has been around since then. Frankly, such talk just turns me off. Why? Because I like stuff that I believe is possible. I suppose many people think it IS possible, but I do not. I prefer less lofty goals, ones that I know I can wrap my head around, and feel that I can make a difference toward achieving a goal.

So last year, I received an email that said, “We know how to end abuse!” Wow, that’s fantastic, I thought. I immediately responded to the email and asked if they could complete the task by Thursday, please. Surprisingly, there was no response…well, not from the author of the email, but someone else who saw my response (uh-oh, it was sent to a public forum) who said, something supportive like “go girl, you crack me up.” This gave me a clue that she did not believe the author’s statement. Was it a lie? Was it hyperbole? Was it political correctness in some fashion? To me, it is either a lie or the truth. After a couple months of no response to the sender, I again responded, saying that there had just been violence in my city, and I can’t understand since he had proclaimed it is now known how to erase violence from the planet….and when was he going to go right ahead and take care of the matter.

Sadly, he did respond but said that it was true that they were DISCUSSING the matter. I said, well, you said you know how to end violence. Please share with me your knowledge. Turned out, he does not know how. He just said it. It was a lie.

I think that “ending violence” is similar to “ending fungus” or some other thing that has been around since the beginning of time.

That is why, many years ago…about 20 or so, I had begun using the term “risk reduction” as to practical steps that could be taken to reduce the risk of abuse. In about 10 years, the term caught on. I like honesty. I really do. I like to say what I mean and mean what I say. And, I also like realistic goals. I don’t like lying. It makes no sense to me. I do not argue with people, though, who say they wish violence did not exist. Me too! But I cannot sign up for something that I feel is impossible. Some say that they truly believe it is possible. Great!

So, in my lifetime, I have enjoyed seeing the fruits of my labors in clients or students or readers, who have used information provided to them, to take practical and realistic steps to reduce the risk of abuse or the impact of abuse for themselves or their loved ones. We know that there is a risk of abuse and violence. Why not make a practical plan for what to do if this should occur? No reason not to! And, those who have used my very practical approach have had good results. Some avoided abuse that may well have happened without a plan. Some were victims of violence, but survived it much better than they would have, without a plan in advance. They all fared better because of the risk reduction planning and effort. And this is something I can believe in.

If you are like me, and want a down to earth and practical, realistic approach to the problem of abuse of people with disabilities, then I recommend you read my book: A Risk Reduction Workbook for Parents and Service Providers.

You can find information about it at www.disabilityandabuse.org/books

Please let me know your thoughts about hyperbole and realism.

A Philisophical Polemic on “Consumer” as a Code Word for People with Intellectual Disabilities

It is January 2003. The term “consumer” has become the newest “accepted” term to refer to people with certain types of disabilities, particularly mental retardation (2013 update: “mental retardation” has now been replaced with “intellectual and developmental disabilities.”) I don t like the word “consumer.” This explains why.

We have been struggling for decades about what words to use when describing people with mental retardation in a way that both communicates what condition the person has and is respectful and affords dignity to those with this condition.

In the early part of the 1900′s, medical definitions also became epithets. Classifications of differing levels of mental retardation included: moron, imbecile, and idiot. This was later replaced by such demeaning terms as “feeble-minded” and “mentally deficient.” Some of these terms became the names for organizations designed to represent and be of assistance to individuals with this condition, such as the American Association on Mental Deficiency and the Association for Retarded Citizens. As those words came into disfavor, AAMD became the AAMR and The Arc replaced the full name for the latter.

The diagnostic categories for people with differing levels of intellectual ability translated in education to the “trainably mentally retarded” and “educable mentally retarded” otherwise known as TMR and EMR. No one really felt good about this, either.

Later on a new category of disabilities was identified and the term “developmental disability” came into being. Although referring to a cadre of disabilities, in California, where there are only four disabilities that initially qualified as developmental disabilities in law (mental retardation, cerebral palsy, autism, and epilepsy), the term quickly became a “code word” for people with mental retardation. Then of course this was soon reduced to “the DD.” As the word mental retardation, or being mentally retarded has become an epithet and changed to “You retard!” (emphasis on the last syllable) or “He’s a retard!”, so it seems the kids have caught on to the legal nomenclature of developmental disability and are heard to shout, “You’re developmental!” as an epithet. Actually, it is a great thing to always continue to be developing, but I doubt this crosses the mind of the child or teen wishing to heap emotional pain on others.

Then, in order to avoid some of these problems, solutions are sought. The newest, now about 7 or 8 years old, I just can’t stand. It is the term “consumer.” As in, “Oh, I want to talk with you about one of my consumers.” I know what they mean. A person with mental retardation. They rarely are referring to individuals with any other type of disability.

What is a consumer? A consumer is one who consumes. Who uses. Who receives. Who takes. For example, when I am shopping for a car, I am a consumer of the auto sales dealer. When I leave, what am I? A driver! When I shop at Macy s, am I a shopper? When I get gasoline at the station am I a customer? When I eat at Coco’s, am I a diner? When I stay at the Holiday Inn, am I a guest? Or am I always a consumer at these places? Let’s say, for sake of argument, that at all these places I am a consumer. What happens when I go home? Am I STILL a consumer or am I a home-owner or a tenant?

Here’s the answer…well, my answer. If I am a person with mental retardation, aka a developmental disability, I am referred to by everyone who knows me as “a consumer.” But what am I consuming? When I go on the special bus, I am a consumer. When I am at the workshop, I am a consumer. When I see my social worker, I am a consumer. And when I am in my own home, a group home, I am a consumer.

If I am a person who does not have mental retardation, I am not, in every aspect and every activity of my life, a consumer. When I go on the bus I am a passenger. When I am at work, I am a worker or doctor or Administrative Assistant. When I see my social worker I am a client. And, when I go home, I am just a person at home.

So, “consumer” is now the generic term, used for the person with mental retardation, having no reference to a particular activity the person may be doing…or “consuming”.

That is the first point.

The second point is that if one is a person who uses social services, that is not one’s entire identity. Or, it should not be. That is only one service, or category of service, that one needs and receives. It is nice to have an identity as a person, separate from whatever support or medical services one may need. Just because I wear glasses most of the time, I do not refer to my status as a patient of my optometrist as my primary life role. Neither should people with disabilities have to have their primary life role be identified as the receiver of services of some public agency. For Pete s sake!! (Thank you “Pete,” wherever you are.)

Then, the last point. If one is, from sunup to sundown a consumer, when does this person have the opportunity to be a “giver?” There is a balance, of course. We all receive and we all give during each day. But if one is ONLY referred to as a “receiver,” how good does that feel? It feels terrible. Plus it isn’t true. And further, it belies the “whole person” reality of each individual. Everyone gives. And everyone receives. So why have we developed the term “takers” or “receivers” for individuals with disabilities, (them), but retain the right to be recognized as both givers and receivers as people without disabilities?

Then the really last point. The worst one. It has been my horrible experience to learn of the even more horrible experience of several individuals with disabilities who have been victims of horrible abuses. Sexual abuses with threats of death, by perpetrators who say, “It is my mission in life to rid the world of people like you who consume resources other people need. Yes, this has been said to more than one victim by more than one perpetrator in more than one state. Probably thousands, who have been silenced by both the death threats, and the horrible message that because of the disability, the individual is “sucking up” resources better used by folks who do not have disabilities. That the individual with a disability is worth so little that they should not be allowed any support or assistance.

So, to use the word “consumer” for people with mental retardation – or any disability for that matter – in my mind, because of this knowledge that I have, may inadvertently give attitudinal support or license to those who think that people with disabilities are just soaking up all those precious and limited resources that could be benefiting others who do not have disabilities.

So when I hear someone use the word consumer, all this flashes through my mind, and I react with all my heart to scream, NO!!! Don’t say that!! It denies full personhood to the individual to whom you are referring. It says that all they do is use (up) resources. It tells me nothing of what disability they may have!!! If you are referring to someone at Macy s shopping to their heart’s content, consuming as much of what Macy s offers as they can, great….but even so, I would prefer customer or shopper.

I wonder if those who freely use the term have had similar thoughts to these. I wonder what thoughts they have had, before adopting the term now used so freely as the coin of the realm. Or, sometimes, I wonder if the person hasn’t given the term any deep consideration at all, accepting at face value that this is the preferred term. Preferred by whom? I have never met a person with a disability who refers to themselves as a consumer. A client of a service agency, yes. But not a consumer.

So what is the answer? I say, let’s not use the word consumer about a person with a disability. Let’s ask people with disabilities what they like. When I ask my clients who have mental retardation what term to use for their diagnosis, they often say, “Well, I know I have mental retardation, but I don’t like that. It’s OK to say I m slow….because I am a slow learner…but I learn!! OK. “Slow learner”. I like the ‘learner” part very much, as it puts people with mental retardation and those without on the same playing field….we are all learners, hopefully for all of our lives. And, some of us do well in some areas, and not so well in others. I can certainly say that as regards physics and geophysical archeology, I am a slow learner. Some identify as slow learners as regards the mathematical sciences. For others, spelling has always been difficult.

It really is OK with me to continue the struggle to find terms to identify people with disabilities that are non-stigmatizing, command dignity and respect for the individual. And while we do so, to strive to assure that the individual is recognized as a whole person with a whole personality, who gives and receives, laughs and cries, has hopes and dreams, disappointments, good times and bad times. But something that never supports the idea that the individual is only a taker. It just bothers me. Now you know why.

UPDATE: It is now 2013, and the term mental retardation has been replaced by intellectual disability. Frankly, I don’t like that too much either, because folks with dementia, Alzheimer’s, ABI’s (Acquired Brain Injuries) and other conditions also have intellectual disabilities, so it is not an “even trade.” However, as time goes on, I expect that new terms will be found, used, tossed, replaced, etc., all striving for something respectful and descriptive. I am also sure that this term will be picked up by the kids and turned into an epithet….in a way I just can’t wait until that first kid/bully name-calls and says disparagingly, “you’re an intellectual!”

Trauma Patient Recovers, immediately wants to send a healing message to others

In 2003 I was working with a trauma patient. He was about 30 years old. He has Down Syndrome, very limited verbal language, and was being treated for multiple sexual assaults that he had experienced during his lifetime. His mother brought him for therapy to help him with his depression, anger, reverberating trauma, all of which were depicted in drawings and sometimes in his conduct. He was also moody, fearful, and had many of the laundry list of emotions and changes in his personality and conduct that other trauma victims experience, even years after the trauma has ended.

He often used hand gestures to communicate, with a little bit of American Sign Language (ASL) used as well. As is true with many individuals with Down Syndrome, he was familiar with ASL. This greatly expands their communication abilities, at least at the expressive level, and for those who are acquainted with rudimentary ASL, such as myself, this skill enhances our communication.

We had already met several times, and in this session he experienced significant relief from this trauma. I use a method called Thought Field Therapy, which is the first of the energy psychology methods, and uses the body’s natural healing mechanism to release negative feelings that often remain after a trauma. In the session I am about to describe, we were working on some of the worst aspects of the sexual assault traumas he had had. At the end of one treatment, it was easy to see that he felt the effect of the release from his body of the feelings, as his color shifted to a normal rosy color, his eyes brightened, his countenance lifted, and he said, “better.” I asked how he felt (anger, bitter, afraid, etc.) and he said, “good.” Usually his verbal communications were in one or two words.

Then he said, “stick.” Stick? I was not sure I understood him correctly. His mother said, “Yes, he said, ‘stick’.” She and I looked at each other in surprise, but wanted to provide him with what he requested. Where was I going to get a stick? I looked around and saw that I had some plants on my desk, with a stick holding the plants up. I got two sticks, cleaned them off and handed them to him. Then he said, “paper” and “scissors.” I dutifully went and got paper and scissors. Then he asked for tape, as well as some crayons.

He used one sheet of construction paper to cut out two triangles, then taped the two triangles one each on the sticks. He then placed the flat of one hand in front of him vertically (like you do in a high-five, except in front of his chest as if he were going to illustrate something. Then, with his other hand he used the flat of his hand horizontally and moved it toward the vertical hand until they touched. He said “Boom!” Then, he placed his hand on his chest, made a salute, then crossed his hands over his chest which in sign language means “I love you.”

It took him three tries to get me to understand. Now that he had healed from his trauma, he was recognizing the trauma of those who had suffered during 9-11, and by salute, and honoring the firefighters and other first responders, in their pain and suffering, and sending them his love.


He wanted me to send the flags he created with the sticks, paper and tape, and the drawing he made which he taped to the flags, to the firefighters in New York. How in the heck was I going to do that??????? But, that is what he wanted, so I promised I would.

I contacted a friend who lives in New York and asked if he would be able to complete this mission. He said he could, so I sent my patient’s creation. My friend delivered it, along with an explanation from me, to the Fire station near Port Authority…Ladder 59 or something. They had created a display in the subway station of the huge outpouring of drawings sent by others wanting to honor the first responders. They added this drawing and flags of honor to the display, where it remained for many months. I was able to let my patient know that his gift had been gratefully received and added to the display. He was very happy to know that his message and his caring had been received, and he was proud to know that his contribution was on display.

I learned such an important lesson that day. His pain had been enormous and his suffering had lasted for many years. Yet, when he was relieved of the pain, the first thing he did was to honor others who have suffered. Frankly, I had no idea that he was aware of or concerned with 9-11. He certainly was. It wasn’t that I was underestimating him, it just never had occurred to me. Now I am aware that I should discuss current events and national historical events of significance with my patients, as they, too, are affected, but few pay attention to their worries, concerns, and desire to be part of the healing somehow.

I just will never forget that within seconds of his feeling release of his own pain, his first thought was to help others.

When Sex Abuse-Reactive Conduct is Perceived as Predatory

Recently I responded to a call from someone at a Regional Center for Individuals with Developmental Disabilities, working on getting one of their clients moved from a State Hospital to a community living arrangement. Sounds good so far.

She said that “a Whole Person Evaluation” had been conducted, and the evaluator recommended that prior to placement, a specialized assessment be conducted, specifically administering two test instruments on the client, both assessing for sexual offender conduct. These both address propensity to re-offend and dangerousness.

Hmmmmmmm. I thought, what are the chances that the client was really a sex offender? The caller told me the history. This was an individual, now an adult, who was abandoned by her parents early in her life, then lived in multiple foster homes until she was finally placed at a State Hospital.

What was the possibility that during this time she had been a victim of sexual assault who later re-enacted what had been done to her? Knowing the probability was extremely high, I wondered if her trauma as a victim had been included in the “Whole Person” evaluation. I wondered if she had received therapy if the sexual assaults were discovered or reported. And I wondered if the evaluator had even considered this possibility.

So, saying NOTHING of the above, I said to the caller, “Well the tests that are being requested are for people suspected of being predators, as you know. At what ages was she sexually abused?” “Oh,” was the reply, “I have that in my file somewhere….I know she was abused a couple of times in her earlier life. Give me a minute to find it in the files.”

I said, “Well, did the evaluator consider the possibility that she was re-enacting what had happened to her, and that this conduct was a part of PTSD as a result of her own victimization?” “Uh…no. Hmmmm, that makes sense…” I said, “A ‘Whole Person’ evaluation should include her entire history, don’t you think? I would recommend using tests that look not for a specific outcome (if you use a measure to detect sexual offenders, what will you likely find?) How about more generic testing including testing for trauma?”

“Oh, hmmm, you have a point” she said. We ended the conversation with her saying that she would check with her supervisors on their request.

This conversation has caused me to think of many questions.

  1. How is it that a “Whole Person Evaluator” (I will have to find out the background, training and qualifications of individuals with this title) could miss the obvious link of previous sexual assault victimization?
  2. Beyond the evaluator how is it that those in charge of placing this client, simply followed the recommendation of the evaluator to have formal testing done on sexual offender profiling without considering the client’s known history of victimization?
  3. What seems to be the problem of skilled professionals missing the link between re-enacting what has been done to you and what you do?
  4. How is it that in the file are known instances of sexual assault, without a similar familiarity with the therapy that had been provided and its efficacy?

This causes me to wonder about the training and understanding of sexual assault within the population of individuals with developmental disabilities who reside at State Hospitals, and among the professionals providing services to them.

I am wondering how I can find out who these people are, and learn the training requirements for their positions. Since it is widely acknowledged that sexual, physical, verbal, emotional and other types of assaults are common within the State Hospital setting, what is the knowledge base required for those assisting in the re-location process.

I don’t know how to find out, but it certainly is a question begging for an answer…as are the other questions posed throughout this blog.

UPDATE: Before I had an opportunity to find answers to the questions listed above, I received a follow-up telephone call. The caller said she had checked with “the team” who agreed that “more of a whole person” assessment was needed. Saying nothing more, she inquired into the detail of how we could set up a contract for me to do an evaluation.

I am ecstatic, to say the least! An inroad! Hopefully, this encounter can lead to a different approach among those who request and review “Whole Person Evaluations” for all of those leaving the State Hospitals for community living.

A conviction for abuse of adult with autism: 2,000 videos supported the allegation

On April 22, 2013 a news article reported that a Vista, California registered nurse had been convicted of two felony charges and faces a sentence of “up to” eight years in prison. He will be sentenced in May.

His mother must have suspected that her 23 year old son who is nonverbal and has autism, was being abused, as she set up a hidden surveillance video camera in his bedroom. It is reported that 2000 incidents of abuse were recorded on the videotapes during a three-week period of time in August 2012.

She handed these over to law enforcement, after which both the 62 year-old registered nurse and his accomplice, a medical assistant were arrested. Both had worked for the family for over two years. The medical assistant is awaiting trial.

Since both are involved in a trial, they obviously did not plead guilty to their crimes. In all probability, this young man is not their only victim during this period of time, nor are they charged with other crimes they may have committed earlier. Both are qualified medical providers.

While it is great that the mother put action to her suspicions and made the recordings, it is phenomenal that so much abuse was committed within that period of time. It is hard to imagine what this 23 year old must still be suffering. It is my hope that the police informed the mother of the Victims of Crime Program which entitles victims to receive therapy for the trauma they suffer as a result of being a crime victim. I hope that the direct abuse victim is getting plenty of excellent therapy as well as his mother and others who may also be what the Victims of Crime program identifies as “derivative victims”…those affected indirectly by the crime.

This is example of what appears to be good hiring practices (hiring medically qualified people). But even medically qualified people must be monitored.  There is a saying: “Trust and verify.”  Hiring people who have technical and professional qualifications is good, but not sufficient to insure safety.  It was mother’s suspicion, and her decision to act on her intuition, that made the difference.

I wonder, though, what would have happened had she only video taped for one day and took her findings to the police. Would that be enough to convict?

We continue to learn lessons about detecting, recognizing and responding to suspected abuse through these news reports. What other lessons do you think can be drawn from this case of incredible ongoing and horrific abuse?

Take Action Even When You Cannot Believe Your Eyes

This week, on 3-19-13, the story broke of yet another adult with developmental disabilities abused in the home chosen by his parents. The group home is run by a seemingly well-established agency with an excellent and long reputation for providing residential and other services to individuals with developmental disabilities. Studio City (CBSLA.com)

After reading the article, I felt that the parents had not been prepared to effectively and quickly respond to signs of abuse. Several things popped out at me:

1. The mother’s complete trust in the agency
2. The fact that when suspecting abuse, she turned to the agency
3. Even suspecting abuse, she left her son with the agency with hidden cameras “to be sure.”
4. After verifying abuse, she turned to the agency
5. The agency’s first response was to destroy the evidence.

These factors inspired me to design a “quick-look Tip Sheet” for parents or other family members who have the responsibility for their loved ones who live or work in programs supported by agencies with a clear responsibility to provide the best of care.

I hope that this Tip Sheet can get into the hands of all family (or other) care providers, to help them break the bubble of invulnerability to abuse, and help them quickly report suspected abuse, leaving the confrontation of perpetrators of abuse (or their “agents”) to the proper authorities. It is a shame in this case that those responsible first thought to destroy the evidence rather than protect the vulnerable adult.

Please find below a summary of the article and the Tip Sheet. Please let me know your thoughts about the Tip Sheet, and also disseminate it to all those who may benefit from it.

According to the article, the parents were unable to continue to provide care for their 31-year old son themselves, due to their own difficulties as they are aging. Their son has autism, is non-verbal, and has an intellectual disability. They put their trust with the agency.

Last year, Coleman said Jay Nolan Community Services helped find Cameron a home in Northridge and provided him with 24-hour in-home care. However, the mother “grew concerned about her son’s living situation when she started to notice bruises on his body.” Thereupon, she notified management, who denied knowledge of how the bruises may have appeared. The bruises continued to appear, get worse, then her son “showed me signs that he’s afraid of the staff.”

With no help from the staff, she installed cameras in his home, and upon viewing the results discovered severe abuse by staff. She said, “I could not believe one human being, even the bad person, would attack a disabled person,” said Coleman. However additional staff were filmed also abusing and watching the abuse.

“Coleman said when she told management she had proof of the beatings,” they began looking for cameras, and destroyed evidence by removing her cameras. The Jay Nolan Center eventually let go two of the staff. One has been arrested and another is pending arrest. The executive director asserts that they took all possible employment precautions in hiring and training.

The parents are again caring for their son, and want to make sure other families do not have the same experience.

Ten Point Guide on Responding to Suspected Abuse of People with Developmental Disabilities
(for Parents or Family Members whose Loved One Receives Residential, Transportation, Day Program or other Services)

1. Know and believe that abuse can happen to your loved one
2. Become familiar with the signs of abuse. Any signs of injury, changes in behavior, mood, communication, sleep or eating patters are included.
3. When you suspect something is wrong honor your feeling and take action immediately. See #4.
4. When you suspect abuse, call a Child or Adult Protective Services agency and the police.
5. Do not discuss your suspicions with anyone at the program where you believe abuse is occurring, as they may deny any problem, punish your loved one, and attempt to destroy any evidence that may exist.
6. Remove your loved one from the program immediately.
7. If there are injuries or physical conditions, take your loved one to a physician, not only to diagnose and treat the condition, but create documentation of your visit and the findings. Take your loved one to a mental health practitioner who can document the changes in his or her behavior and mood and who can document what your loved one’s memories are of the abuse.
8. Create a document in which you write all of your activities. Begin with when you first suspected abuse or neglect. What were the signs or signals you noticed? Write the dates of these, and if there were injuries, detail what they were, their appearance, and where on the body you saw them. If staff gave an explanation, record this in your file. Write down when you called the police or protective services agency, the name of the representative, time and date of the call and what was said. If a staff member discussed this with you, write down what they said and their name and the date and time of the discussion.
9. Notify the Regional Center representative of your findings, suspicions and actions or your disability program in your state.
10. Get a police report. Contact the Victims of Crime program in your area and seek their support for reimbursement of costs and therapy for the family.