• Doing What Come..., Anderson
• Behaviour Self!  Hingsburger
• Black Ink, Hingsburger
• In-difference, Hingsburger
• Just Say Know, Hingsburger
• Reproductive Issues, Haseltine
• Something Hap..., Kehoe
• Telling Secrets..., Orleman
   
• Back to Books and Videos
   

Doing What Comes Naturally by Orienda Anderson

I found this book totally engaging and packed with great practical information. While it does indeed dispel myths and advocates healthy sexual relationships for people with DD, the majority of the book deals with sexual abuse...it's manifestation in people's behavior and health. The disgrace is that abuse is likely the major sexual experience most people with DD encounter.

Every issue is followed by a story that brings the technical information into real focus, giving the reader more information about how to investigate or respond to suspected or confirmed abuse.

The last chapter, dealing with counseling, was my only concern. The information is clear and useful, but the author seems to promote direct care staff investigating abuse. This is contrary to our recommendations. The information would be extremely useful to trained therapists and police investigators.

I'd highly recommend this book for everyone involved in the life of a person with DD, including "generic professions" such as police, health providers and rape crisis center staff. I was especially pleased to see the consistency between Orienda Horn Anderson and Dave Hingsburger regarding the information, as well as their personal and professional belief systems.
 

Reviewed  by Robin Keehn, Area II Board

Back to Top

Behavior Self! by Dave Hingsburger

Upping the Anti and Black Ink by Dave Hingsburger

Book Review and Suggestions for Providers

“How to Create a Hostile Environment for Abusers”

A clearly worded policy outlining the required reporting of Elder or Dependent Adult Abuse and Mandated Reporting requirements should be in place – attached sample from Work Training Center Inc.

All Community Care Licensed facilities must complete the “Your Legal Duty … Reporting Elder and Dependent Adult Abuse” video and curriculum within 60 days of the first day of employment – see attached directive from DSS. 

In his book – Upping the Anti, Dave makes a strong point about success as the elimination of the “next time” – that is abusers and potential abusers need to be on notice that the organization/facility that just hired them take abuse prevention seriously and report every time there is an allegation of abuse from any service recipient.  When all staff (including and especially the abuser) realize that a criminal investigation is going to be done – the crime is taken seriously.  There may never be a conviction, but the abuser is on notice – don’t even try, because the next time …

Notes/Suggestions from Dave Hingsburger:

§    Policies must ensure that people with disabilities have as much education as possible about boundaries and about what to do when boundaries are violated.

o   The yearly planning meeting will have goals for the individual in the area of safety, abuse prevention and sex education.

o   All people with disabilities in care, who are able undergo some form of abuse prevention training every 6-8 months.

o   All people with disabilities in care, who are able will be offered the opportunity to take sex education/relationship training classes through the agency.

o   All people with disabilities in care, who are able will be offered the opportunity to attend or belong to a self-advocate group.

§    The organization/facility will follow all laws and regulations regarding the reporting of abuse.

§    The organization/facility will communicate through training and orientation, that all reported abuse will be turned over to the proper authorities.

§    The organization/facility will support staff through the process of reporting abuse by:

o   Ensuring that training on abuse happens on a regular basis ensuring that abuse policies and reporting protocols are regularly reviewed .

o   Ensuring that staff who report abuse are not subject to peer or supervisor ostracism or punishment.

§    The organization/facility will review the abuse reporting procedure at a board level once yearly.

§    The agency will develop a relationship with the local police force to discuss any issues of concern or support.

§    Within 48 hours of hire all new staff will be given the policy on how to respond to a complaint of abuse.  Supervisors will have staff sign and date a form indicating that they have reviewed the policy.

§    Supervisors/Managers review the policies and protocols on a 6 months basis at regular staff or team meetings.  Document training in minutes, and staff who miss the training must meet with supervisor to review content individually.

§    Supervisors will be trained how to handle an abuse report when staff inform. 

§    Supervisors will collect information without questioning the staff or doing an investigation.  Agency investigations only begin after outside authorities (APS, Ombudsman, Police) give approval!

§    Supervisors will ensure the clients safety is immediately assured:

o   The client will not be served by the alleged abuser.

o   The client will not be grilled by any staff or other client.

o   The client will not be accused of causing problems by staff or other clients.

o   The client will have an identified support staff with whom they can talk.

o   The client will be involved in all decisions regarding their support needs.

o   The client will be offered counseling and therapy if they so desire.

§    Supervisors will immediately suspend the alleged abuser with pay(?), for the period of investigation.

§    Supervisor will assess risk of confrontation with alleged abuser, taking  supports to meeting if necessary; meet only at the “head office”; and document content of the discussion.

§    Supervisor will meet with the staff member who took the initial report to ensure that the staff is feeling supported/offer counseling services if necessary.  And, ensure that the reporting staff is not subject to:

o   Workplace harassment,

o   Ostracism,

o   Threats,

o   Intimidation.

§    Staff receiving the report should notify APS, Ombudsman or police first.  If the staff believes that the person in at imminent risk – inform APS/police of possible danger.

§    Staff receiving the report will notify their supervisor only after contacting the appropriate outside authorities.

§    Staff, when receiving the report, will not ask leading questions or attempt to do an investigation.  End the conversation, once it is established that abuse has occurred.

§    Staff will not discuss the allegation with supervisor (beyond the basics of the report) or with other staff (at all) until they have been interviewed by the appropriate outside authorities (APS, Ombudsman, Police).

§    Staff will fully document the allegation once the phone calls have been made – to include the clients allegation and their own questions.

§    Should a person with a disability disclose that they are having a sexual relationship with a staff but does not allege that the contact is abusive, an investigation still must occur.  If the individual is able to give consent and if the individual maintains that no force or coercion was used, the police may determine this to be inappropriate but not criminal.  Therefore, it is important for an agency to have policies regarding the dismissal of staff who violate this boundary.  For though it may not be criminal, it is still inappropriate due to the inherent power relationship between a person in care and a care provider.

Dave provides practical advice in his book – Black Ink, regarding guidelines for dealing with reports of sexual (and other) abuse from people with intellectual disabilities.

     Three main reasons staff don’t report abuse:

1.    Cultural demand that we not ‘tell on someone’ – to not be a ‘fink’.  It’ is important to help staff understand the distinction between ‘telling on someone’ and reporting a crime.  Reporting a crime is a mandatory job requirement, in fact staff need to understand that they are criminally liable if they ‘have knowledge of’ and do not report the crime.

2.    Fear of reprisal from coworkers/supervisors.  An atmosphere of respect for those who report abuse must be established by the organization/facility.

3.    Fear of reprisal from the organization/facility.  Again, an atmosphere of respect for and protection of these who report must be maintained by the administration of every organization/facility.

            When receiving a report of abuse, it is critical for staff to maintain a supportive attitude but never ask a leading question.  Ask for information by statements and questions such as:

o   Tell me what happened.

o   What happened next?

o   What happened before?

o   When did this happen?

However, once the person has given information that a crime has been committed and that they have been victimized, do not ask any more questions.  Gently end the discussion at this point.  It is at this point that the authorities (APS, Ombudsman, Police) must be called.  Further discussion will taint the case.

It is important to support the individual, but do not cross the line by asking further questions, any questions could be viewed as leading questions and may unduly influence testimony. 

Once the call has been made, complete the written documentation, (LIC341). 

Supervisors receiving the report need to be careful not to interview staff or discuss the report, beyond the documentation.  The witnesse's (the victim and the staff who received and wrote the report) need to be kept ‘uncontaminated’ by conversations with others or questions from supervisors.  Debriefing can occur after the authorities (SPS, Ombudsman, Police) have taken their statement.

Dave’s sample script:          (I) = individual with a disability and (s) = staff

(I)     Can I talk to you?|
(S)    Sure, what do you want to talk about?
(I)     The night staff touched me.
(S)    What do you mean?
(I)      He touched my pussy with his dick..
(S)     When did this happen?
(I)      Last night after lights out.
(S)     I am so sorry that happened to you.
(I)      (Cries)
(S)     We need to call the police right now.
(I)      OK, can I call?
(S)     Sure you can.

Notice that staff got the information needed to determine that a crime had occurred but did not ask a single leading question.  As soon as the staff were sure of the crime they initiated the phone call.  NO need to get names of staff, or further information – any good attorney will easily see this as leading the victim.

Final words from Dave – typically when it comes to issues regarding abuse we see conviction as success and as the only acceptable success. According to Dave, we need to see success much differently.  Success is anything that reduces the likelihood of future abuse … it is anything that makes the world safer for those in care … it is PREVENTING abuse. 

The fact that there isn’t a conviction should not be seen as a failure.  The openness of the organization to making the report, the opportunity to tell their story to the authorities, the fact that a police report was made makes this a success of intervention.  There is a fear created in perpetrators that comes from the possibility of being caught and the idea of being in the police’s radar.  That is the success – preventing the ‘next time’ this creates a hostile environment for abusers and potential abusers.

Reviewed  by Deb Royat, Service Provider

Back to Top

Behavior Self! by Dave Hingsburger

Behavior Self! is a book written for those who wish to read a clear, compassionate view of current thought in behavioral practices with the developmentally disabled. The author, Dave Hingsburger, writes from a real-world, real-person background citing actual cases in which various behavior programs have been tried and tested, some with success and others with dismal results. He writes, “Behavior programming at its best teaches people with disabilities new skills with which to control their own lives. Behavior programming at its worst takes control of someone else’s life.”

His common sense approach begins with looking at the whole person; from health and medical issues to seemingly minor events in people’s lives which providers may not see as significant at the time but can have unforeseen consequences, thus leading to what is termed a “behaviour problem” in the eyes of agencies and care providers. Some of the stories are very poignant and he provides a wide variety of scenarios from which to draw. This book is a valuable resource for anyone who is considering implementing behavior programs into their practices and should be available in any agency that works with the developmentally disabled.

Reviewed  by Kathleen Donnelly, Service Coordinator

Back to Top

Black Ink by Dave Hingsburger

This is a short and direct story on how to report abuse. In three little words, “Abuse Must Stop.” We know that 80% of women and 54% of men with developmental disabilities are sexually abused.  We now know that 90% of the abusers are in care providing roles. We also know that only 3% of these abusers serve any jail time! There are three main reasons why staff does not report abuse.

1. We do not to tell on someone or be a “fink”
2. There are fears of reprisals from co-workers
3. The fear of reprisals from the agency

If we can get the staff and the agency to think the same about reporting abuse we can overcome these fears.

First we will talk about how to deal with your emotions. TRUST! We need to get the victim to trust us.  You Are Here For Them, and you have to make it through the report.  If you do not listen with your heart and your eyes along with your ears, the victim may never tell anyone again. They may be victims for years to come.
    
The next part is how to react or respond to an abuse report. This book makes it very clear that it is important to remember to be fully supportive of the victim at all times. Give them supportive statements like “It is not your fault” and “I believe you.” Remember that you need to call the police. You should probably do this before reporting the abuse to a supervisor or the agency where the alleged abuse occurred. You need to document the report but you do not investigate the abuse. Most importantly, make sure that the victim is in a SAFE place. We do not want the abuse to continue. The conviction is not the success. Success is when you can reduce the possibility of any future abuse.
    
The book makes it clear that PREVENTING the abuse is the most important thing. This book is very helpful to me and others so that we can learn how to report abuse in a way that gives the victim more power and control in their lives.

Reviewed  by Sherri Douglas, Consumer Advocate

Back to Top

Indifference, by Michael Soucie, Astra Milberg, and Dave Hingsburger

     This little book is such a great read. It is a collection of stories about people with Down's Syndrome. In "A Moment's Notice," a woman protects herself by using one word, "NO!" Such an inspiration. Many hours pass, while people with Down's Syndrome are being told to be quiet, but when you leave the room, Mick tells all.
     In "A Gift Unopened," we discover that maybe acceptance is where we find who we really are. "Cold Lunch" is a story about a woman who has no understanding or acceptance of people with disabilities. She is contrasted by a woman who loves her disabled child.
     Of all the stories, my favorite is "A Letter to the Baby Who Fell From The Bridge."  Kaya, a baby with Down's Syndrome, fell or was thrown from a bridge. Miraculously, the infant slid from tree branch to tree branch only to land unhurt on the ground below. A woman with Down's read about Kaya and wrote a letter to her expressing the odd but special gift they both shared by having one extra chromosome.
     I found these stories to be truly inspirational. I too have a disability and face personal challenges everyday. I am reminded that each of us is a unique and precious gift to the world.

Reviewed  by Sherri Douglas, Consumer Advocate

                                                                                                         Back to Top

Just Say Know by Dave Hingsburger

“Just Say Know,” is an innovative and humorous text helping the reader to understand and potentially reduce the risk of sexual victimization among people with developmental disabilities. Dave Hingsburger combines personal stories with practical knowledge to clarify why sexual victimization happens to people with developmental disabilities, and gives suggestions as to what each person can do to prevent such occurrences.
    
The text begins with a story about attitudes. Hingsburger points out that historically, people have believed the myth that people with developmental disabilities cannot be sexual. He goes on to explain the stereotypes and stringent rules that have been placed on people with developmental disabilities to keep them from being sexual. Following the explanation and discussion of these rules, he advocates for people with developmental disabilities, saying that they should be given equal opportunity to sex education and information about relationships. The withholding of information only serves to perpetuate sexual victimization, as well as sexual acting out. People with developmental disabilities become vulnerable because they are protected from relationships, sexual information, decision-making, and society. By educating and giving choices to people with developmental disabilities, we give them power and the opportunity to make informed decisions.        
    
Hingsburger stresses the understanding of “normal” sexual behavior. All children, adolescents, and adults engage in sexual behavior. It is important to accept the normal sexual behaviors, and encourage appropriate sexual outlets. People must be taught about anatomy, and understand what types of behaviors are sexually appropriate. Caretakers and educators must clearly define what is appropriate, at given age and development levels. Those with developmental disabilities should not be punished for engaging in normal sexual behavior. They need to be taught that sex is good, and that privacy is also good. By teaching about sex and encouraging normal sexual behavior, Hingsburger hopes to prevent sexual acting out and sexual victimization.
    
In Hingsburger’s discussion of sexual abuse, he points out physical and emotional signs of abuse. He also stresses that people with developmental disabilities should not be blamed for being victimized. Instead of focusing on what was wrong with the victim, we should understand that the victimizer is the problem. Children are not molested because they are children, women are not raped because they are women, and people with developmental disabilities are not abused because they have a disability. These crimes are the result of the perpetrator, and we need to prevent the abusive behavior by examining the person who is perpetuating it. Victims and victimizers can be anyone, regardless of age, appearance, class, race, or disability.
    
Hingsburger suggests teaching non-compliance, and assertiveness to people with developmental disabilities. Simply saying “no,” and speaking up for one’s self, are often means of preventing abuse. Sex education is also essential, because this provides people with the tools to understand when they are sexually victimized, and gives them the ability to repeat what has happened to them. Hingsburger also warns caretakers of the dangers of personal discomforts interfering with the rights of people with developmental disabilities. He states:  “It is unethical to let personal discomfort splash over onto the lives of even a single person with a disability in your care.” 
     
In conclusion, “Just Say Know,” is a book about learning to respect the rights of others, while not letting others infringe on your rights. People learn about themselves from the way they are treated by other people. If people with developmental disabilities are used to letting others violate them daily, they will expect this unkindness and see it as normal. Sexuality is something universal to our society, and is not something that people with developmental disabilities should be protected from. Rather, they should be educated and informed, ready to make personal choices about very personal issues. Education and information give power. Protection and prohibition foster vulnerability and the potential for victimization. 

 Reviewed  by Kristin Moll, Service Coordinator

                                                                                   Back to Top

Reproductive Issues for Persons with Physical Disabilities, Haseltine, Florence P., Sandra S. Cole, and David B. Gray

Myths and lack of information have largely dictated the subject of reproductive issues for people with physical disabilities. In this comprehensive reference text, various authors take a team approach to dispelling these myths and social stereotypes. “Reproductive Issues for Persons with Physical Disabilities” presents scientific facts along with personal accounts of couples and individuals who have decided to conceive or adopt children. Contributors including researchers, medical professionals, consumers, and psychologists provide detailed facts, current research, sensitivity to extremely personal issues, as well as disclosure of unique personal stories of frustration and triumph.
    
Millions of people with disabilities have discovered that they are able to enjoy sexual satisfaction despite their physical limitations. However, some professionals and parents provide little support or information because they are uncomfortable with the situation. Although our culture is in a period of “sexual enlightenment,” silence still seems to perpetuate the idea that disabilities and sexuality cannot exist together. By isolating people with disabilities from sexual knowledge, their chances of learning gender roles, facts about sex, and interactive skills are greatly reduced. We must also consider what is means to live with a disability in a society where concepts of beauty, sexuality, and reproductive worthiness are associated with television programs, movies, advertisements, and other media tools that portray a narrow picture of physical attractiveness.
    
Contraceptive choices for men and women can present a challenge to people with physical disabilities. Not all methods may be feasible or effective, and it is important for all persons to consult with their physician before choosing the contraceptive method that is best for their lifestyle. Physicians should be trusted professionals who respect the patient’s right to sexual activity. If a person with a disability is discouraged from becoming sexually active and feels that they are not being treated fairly, they may want to consult with another physician who will accept their decision to become sexually active. Today there are several effective methods of birth control, although none of them are 100% effective. Men and women can choose from barriers methods, oral contraceptives, or implant methods.
    
Once a woman with a physical disability becomes pregnant, she can expect to face both emotional issues and physical discomforts; some will be similar to a woman without a disability, and some will be unique to that woman and her disability. In a society where most women are pressured to have children, women with disabilities are pressured not have children. Social disapproval as well as personal fears often prevents these women from having children. This text details the interactions between disabilities and pregnancy, as well as listing pregnancy discomforts uniquely affected by a disability. It also interviews several women who chose to have children, giving accounts of their struggles as well as joys.
    
The next section of the text focuses primarily on clinical issues. While the chapters are somewhat wordy and technical, they provide extensive coverage of a variety of important issues. Topics such as reproductive disabilities, genetic counseling, orgasmology, spinal cord injury and sexual functioning, infertility, sexually transmitted diseases, and electroejaculation for males with neurological impairments are covered in this section. Each chapter gives insight on a specific topic, citing research studies conducted, their implications, and further references for the consumer, researcher, or medical professional. The clinical section provides an abundance of information on topics that are rarely touched on, and acknowledges the fact that sexuoerotic issues have been deemed as inappropriate for medical and scientific discourse. The text forgoes the assumption that scientists and medical researchers cannot study eroticism and provides the reader with factual knowledge regarding sexual arousal, sexual response cycles, and overall sexual functioning in both men and women with a physical disability.
    
The text concludes with a short section on future research and policies in regards to reproductive issues for people with physical disabilities. It stresses the personal accounts that support the research and training to enhance sexuality, reproduction, adoption, and parenting for people with physical disabilities. Human reproduction is extremely complex, especially when considering congenital and acquired physical disabilities. This text will provide any reader with a comprehensive overview of an array of topics related to reproduction for people with physical disabilities.

Reviewed  by Kristin Moll, Service Coordinator

Back to Top

Something Happened and I'm Scared to Tell, Patricia Kehoe

This book encourages children to speak out about abuse. The story is about a young child who was abused and did not want to tell anyone. A lion talked to the child and told him it was not his fault. Children need to be able to tell other people about abuse and not worry that they won't be loved any more.

Reviewed  by Shelly Anderson, Consumer Advocate

Back to Top

Telling Secrets -- An Artist's Journey Through Childhood Trauma by Jane Orleman

Telling Secrets is a pictorial journey through one woman’s traumatic childhood, her therapy as an adult, and the long healing process. The images are powerful and disturbing.  If we find them embarrassing or frightening, the artists reassures us that she shares our feelings.
    
The book uses a series of paintings to define the process of Jane’s therapy. Dream plots and images also contribute to our understanding of her art. Jane Orleman’s visual dialogue began after a therapist asked her if she had ever painted from her own life experiences. Until that time, her artistic talent and her childhood traumas had been emotionally and spiritually separate entities.
   
The artist used guidelines like “never censor the creative process,” and “do the work necessary to face…demons and follow where the path leads…”  Through this art and continued therapy, Jane was able to unlock her creativity. She created hundreds of oil paintings and began to seek opportunities to speak publicly about her work. In the many exhibitions that followed, Jane’s paintings came to be viewed as a tool for learning by survivors, professionals, sex offenders, and others.
    
One of the challenges in treating a sexual offender is that the person often lacks empathy for his victim—he may even believe that the victim wanted to be molested. Jane says,  “A probation officer who took an offender to see my show said the offender cried, a rare show of emotion.”  She hopes that her paintings will plant seeds of empathy in those who view them.
   
Telling Secrets has much to offer as an educational and therapeutic tool.

Reviewed  by Mary McCart, Community Service Specialist

 Back to Top

Updated Monday February 11, 2008