OVERVIEW OF ABUSE OF PEOPLE WITH DEVELOPMENTAL DISABILITIES

By Nora Baladerian, Ph.D.
Presented at the AAMR Conference, Orange County, 1985
(Author's Note: Although this article was written in 1985, much of the material is still pertinent today. Please accept my apology for any non Aperson-first@ language errors, as I may have been unaware of them or they did not exist at the time of this writing.)

 

Introduction

            I have worked since 1973 as a Certified Sex Educator in the area of sexuality and people with developmental disabilities. Since 1983 I have worked intensively on abuse of people with disabilities, including sexual abuse. Prior to this I worked in family planning clinics as a health educator.

            Abuse is one of the "hidden" areas of life of the disabled person with a developmental disability.  Most of us professionals have trouble dealing with sexuality and developmental disability, much less acknowledging the existence and even pervasiveness of sexual abuse of people with developmental disabilities.

            As we begin to open this can of worms, we realize the can has been available for study and attention for years.  We just have been, for the most part, unaware of its existence. Perhaps
it is too horrible for us to contemplate.  In fact, it is.

However, professional/parent repulsion does not, unfortunately, magically dissolve the problem. The victims of abuse continue to suffer the short and long term effects, suffer ongoing abuses, and multiple abuses, whether or not we choose to see it.  The time has come to acknowledge and address the problem, and, most importantly, take direct action to stop abuses that are occurring, prevent further or initial abuses, and provide treatment for those who are victims of current or past abuse.

I will review 7 areas:

l.. Define Abuse and Identify Types of Abuse
2. Identifying the Perpetrators
3. Incidence and Prevalence
4. Identification
5. Prevention
6. Treatment
7. Recommendations
DEFINING ABUSE AND IDENTIFYING TYPES OF ABUSE

            There are many definitions, legal and operational, of abuse.  Overall, abuse is the non‑accidental injury or committing of acts that could result in injury, through acts of omission or commission.  The seriousness and nature of the injury require discretion, on the part of the reporter, to determine if the real or potential injury is "serious", and if the acts or omissions that cause the injury are non‑accidental.  Those who cause these abuses may be individuals, institutions or society as a whole.

Who "individuals" are, is clear.  Institutional abuse includes approved or non‑consequated (new word!!) abuse of children in schools, juvenile courts, and other agencies.  Societal abuse refers to approved or non‑consequated abuse of children by society as a whole, for example the fact that only in 1962 was "child abuse" even recognized by professionals who work with children, after centuries of preferring to turn away from acknowledging the plight of children...to the detriment of children, and in the endeavor to "protect" parents from embarrassment.

            The types of abuse experienced by children (with disabilities or not) fall into the following categories:

            Physical abuse:  Any non‑accidental physical injury or injuries to a child by a caretaker.  This includes: drug use, drug use by infants/children, burning, whipping, scalding,
hitting with objects such as hammers, slamming into walls, stomping over,  kicking,  shaking;  resulting in abrasions, lacerations, bruises, scars, fractures, brain damage, sensory
impairment (blindness, deafness).       Satanic or cult ritual torture, mutilation or murder of children.  Other types of homicide (drowning, stabbing).

            Physical neglect:  Failure to  provide adequate food, shelter, clothing, protection, supervision and medical and dental care.  Signs are:  starving, child always sleepy or hungry,
unsanitary conditions in the home (garbage, animal or human excrement), lack of heating, fire hazard, abandonment.

            Emotional abuse: A pattern of verbal assaults or coercive measures against a child destructive of his self‑esteem. For example, belittling, blaming, sarcasm; unpredictable responses (child never knows when the next emotional outburst is coming, and the outbursts are unrelated to child's behavior); constant discord in the home, humiliating the child. (You dummy, you'll never amount to anything; what's the matter with you?; why do you always...; you're no‑good now, and you never will be; I wish you had never been born...I didn't want you anyhow.)  Emotional abuse is always a component of the other types of abuse, as a consequence of their occurrence.  Viewing the cult ritual torture/mutilation/murder of other children and animals takes its toll emotionally.  The perpetrators almost always threaten the children if they tell someone about what is going on, and these threats seem real...and often are...to the children. They say, " if you tell, no‑one will believe you anyway"; "you can't live at home anymore" ...or, "you're dog will die",  "you'll get me in trouble, and then mommy will be mad at you".

            Emotional neglect: The failure to provide the nurturing or stimulation needed for the child's social, intellectual and emotional growth.  This includes:  ignoring the child, rare demonstration of affection to child (or none).
 
            Sexual abuse: Any sexual contact, between an adult and a child 16 years of age and under. This includes:  exploitation (using the child for one's own sexual excitement through taking pictures, showing pictures), incest, rape, fondling, oral sex, anal sex, penetration with objects, exposure, forcing child to commit sexual acts on other adults and children, forcing a child to masturbate self or others (adults/children), and satanic sexual rituals including sexual mutilation, and torture.

            Murder: This really falls under physical abuse, but as it is so important, I like to create a separate category for this. Two examples.  Ray Walker, a profoundly retarded man, 28 years old, was found dead in a box that was nailed shut.  He had been missing for more than 7 days.  He had been living in a licensed residential home for 6 disabled men.  This is an example of an individual perpetration of abuse.  His murderer was found and prosecuted.  The license for the home was revoked for 2 years. Baby Doe Bloomington was also murdered, the perpetrator being both an individual (his physician) and society.  He was born with an esophageal fistula, a condition that sent food right back up from the stomach, inhibiting the processing of food.
This is an easily correctable condition, and standard procedure, as this happens to a large number of newborns. However, Baby Doe Bloomington also had Down's Syndrome, which indicates a high probability of retardation, but the level cannot be known until the child is at least 3 to 5 years of age.  The physician recommended, and the parents agreed, that the corrective surgery not be performed, that the child not be given any medical treatment at all, which includes food and water, so that he would die. The nurses refused to comply, so private nurses were hired, and the child removed to a private room at the hospital. Appeals to the court upheld the doctors's orders.  He starved to death. This case, however, was not considered abuse, nor reported as abuse. He was considered to have died of natural causes.

            Financial abuse:  The misuse of the funds of another, including the keeping of funds from it's due recipient. This has more application for dependent adults, and frequently goes along
with physical and emotional neglect.

            The state laws on child abuse apply to children with a developmental disability as well as all other children. The State recognized the continuing vulnerability of  adults with developmental disabilities, and created the Dependent Adult Abuse Law.  As a parenthetical statement, no money was provided for implementation of adult abuse protections.  Guidelines for investigation, prosecution, and intervention have not yet been developed.  Apparently guidelines development will occur during this year (1986), with a team from the State Departments of Developmental Services, Social Services and Adult Protection.  This law includes the dependent elderly person as well as the adult who is dependent due to a disability.

IDENTIFYING THE PERPETRATORS

            In the case of children with disabilities and dependent adults, 99% of the perpetrators are well known to and trusted by the victim.(1) So  who are they:  they are parents, extended
family members, special education teachers, aides, bus drivers, psychologists, psychiatrists, physical therapists, occupational therapists,  medical doctors (pediatricians, gynecologists), recreational specialists:  boy/girl scout  leaders,  camping leaders, residential care providers and aides...in short, any category of person who deals with disabled children and dependent
adults has been charged and convicted of abuse of their clients.

Examples:  President of a sheltered workshop for 20 years; chief psychiatrist of the adolescent unit for mentally ill children (also 20 years);  physical therapist for children with cerebral palsy; camp leader for young adults with developmental disabilities..

INCIDENCE AND PREVALENCE

            Although one would think that data would be kept on such an important item, very little has been done to document abuse of people with disabilities. Some feel this reflects the strong repulsion from the knowledge of the problem.  Others believe that children and adults with disabilities represent such a small number percentage‑wise it isn't all that important.  Some believe the disabled themselves aren't that important (A high ranking staff member of the Los Angeles County Department of Children's Services stated, "I just can't get excited about this issue!") Others, I believe just never thought of it.  Whatever the reasons, the following are the accomplishments to date on data collection.

           
            (1)  The United Cerebral Palsy organization estimates that 11% of their constituents have cerebral palsy as a result of physical abuse.(2) Eleven per cent!!!!

            (2)  We have some data available to us, reported in the pamphlet, "Child Abuse and Developmental Disabilities" published by the Regional Developmental Disabilities Offices in Boston. It includes the following data:  In an examination by David Gil in 1970 of confirmed cases of child abuse, 29% of the children had demonstrated a developmental disability prior to the abuse.  A national survey conducted of Parents Anonymous members showed that 58% of the member's abused children had developmental problems prior to abuse incidents In a study conducted by the Denver Department of Welfare,  nearly 70% of the children exhibited either a mental or physical deviation prior to their reported abuse.

            (3) California Association for Retarded Citizens reported in its 10/12/84 newsletter, that two to two and a half million children a year are born with some effects of Fetal Alcohol syndrome (FAS), which makes it the third most common cause of mental retardation

(4) The Seattle Rape Relief Project on the Developmentally Disabled (1) for 1977‑79 found of their program participants 70% had had at least 1 incident of sexual abuse (remember the

definitions).  None of these had been reported prior  to involvement in the program.  Their estimates are that of the population, of individuals with developmental disabilities approximately 75% experience abuse, prior to age 18.

(5)  Other estimates on sexual abuse put the number at approximately 10 times the rate in the general population. Estimates in the general population are l in 4 girls, l in 6 boys will be molested prior to age 18. Ten times l in 4 indicates 99% will experience up to 4 incidents of sexual abuse.  This is closer to the experience of Sex and Developmental Disability professionals.  As yet, there is not a data back‑up on this.

Which raises another issue..why not?  Why is data on  the disability of the abuse victim not collected? To remedy this in California, last year the Los Angeles Committee on Abuse of Disabled Persons lobbied very hard with the following result:  The Suspected Child Abuse Investigator Report now has a box which asks for identification of the victim and suspect as Adevelopmentally disabled@ We felt this was a major accomplishment.  Data  will be available in the State of California effective this year.

            It is interesting/devastating to note that the Department of Developmental Services document "Prevention Plans to 1990" does not address abuse as a cause of disability, even though simply  for cerebral palsy we know 11% is due to abuse.  What is the percentage  for other types  of  disability?  i.e.  mental retardation, seizure disorder, brain damage, etc.? 

            I believe that abuse is a significant contributor to  disability and cannot fathom why it is not addressed by the Prevention department.  Certainly much of it is preventable.

            In a paper I presented at CANHC last year, I have outlined some "Family Reactions to the Disability of a Child", which describes a series of reactions and difficulties all family members experience.  Some of these can contribute to increased stress which we know is a factor in abusing families.  This is a reference you would like to have. Another resource on this topic is the report of the Senate Subcommittee Hearings held by Senator George Miller last year on Families with Handicapped Children.

            Incidence of dependent adult abuse is really unknown, as laws regarding its remediation and reporting are so new and the guidelines are not even written.  Other states are equally delayed in this area of knowledge.

  Regional Centers for the Developmentally Disabled vary greatly in their approach to abuse of their clients.  Some, for example, Lanterman and San Diego, are rigorous in their reporting and follow‑up...others state they NEVER report abuse as a matter of policy. They do not specifically track abuse of their clients as a separate "incident report", and cannot provide any data on the number of incidents of abuse reported, type of abuse, or any demographics for any given time period.  Of any agency, it seems to  me the Regional Centers should be a major source of information on this topic.  I do understand that, if requested, the Regional Centers could provide information on the number of cases they carry that are disabled due to abuse.  I have not investigated this yet, but have been told that it is available information for the asking.

 

IDENTIFICATION

            One major difficulty is obviously in identifying victims of abuse.  Part of the difficulty lies in the Regional Center's role, that does not include intensive day‑to‑day contact with clients and families, which would obviously make identification easier.  But this is the job of those who do have this intensive contact: special education programs, day programs, workshops, residential care programs. So, two roles appear for the Regional Centers:  First, direct involvement, when AT INTAKE, direct questions are asked of parents and clients regarding sexual activity,  physical discipline practices,  verbal discipline practices, to gain a "profile" on how daily life works.  Direct questions about history of abuse often "open" an opportunity for parents and/or clients to talk, where they may not do so without the  openness of the counselor.  Second, indirect involvement, assisting through formal and informal  training  of  providers in the  area  of  abuse identification (signs and symptoms), what reporting guidelines and requirements are, and that the Regional Center supports and will help in reporting processes.

            Regional  Center  counselors  should  be  thoroughly knowledgeable about Client Rights and what these mean.  They should do a thorough (rather than cursory) discussion with each client of what these mean, and assure that the client has actually been receiving these rights.  The monitoring  of programs/providers is not adequate as we know. More intensive
technical training is really needed at this level‑‑the most critical level‑ as this is where monitoring actually takes place.

            San Diego regional Center has a SCAN (Suspected Child Abuse and Neglect) Team which meets bi‑weekly.  At this team are the special Regional Center consultants ( nurse, psychologist, sexuality educator), and local experts (hospital pediatrician, SCAN expert).  Regional Center counselors come here to discuss cases, to determine if a report should be made, if more questioning by the client program coordinator should be done, or if none is required. This provides both technical assistance and moral support to those "on the line", and has tremendously strengthened identification skills and practices, and helped numbers of children who otherwise might still be undiscovered or unreported victims of abuse.

TREATMENT PROGRAMS

            Often  my  referrals  are  for  offenders, who have developmental disabilities.  On these cases, I always ask, who is treating the victim.  Ninety percent of the time, I find that no referral has been made for the victim.  Why not? Many times, no one has thought of it. Sometimes even developmental disabilities professionals believe the victim didn't "really" suffer, due to the retardation.  TREATMENT IS STILL REQUIRED!  People have feelings.  Not to mention the greatly increased vulnerability of a victimized person.

 The State Departments of Mental Health and Developmental Services have a memorandum of understanding regarding provision of  mental  health  services  to individuals with a developmental disability.  This should be used at the County level, to assure that victims of abuse with developmental disabilities receive the same level of treatment as their Ageneric@ counterparts. Again, it takes perserverance and action to reify the agreement, but the abuse victim with a disability is hardly the appropriate agent for advocacy at that point in time...it is up to the State‑assigned advocates, namely Regional Center staff.

            Regional Centers should also enter into a mutual training and technical assistance program with local State Mental Health programs,  to  assist in providing specialized  post‑trauma
counseling to children and adults with developmental disabilities.

PREVENTION PROGRAMS

            There are scattered Prevention training projects throughout the State and nation.  One of these is the previously noted Seattle Project, which continues to provide rape and sexual assault prevention training to adults with developmental disabilities.

            The Waters Child Abuse Prevention Training Act specifies that programs be offered to ALL children at various grade levels. In response, some programs simply provide the more basic program to children with developmental disabilities,  without  particular understanding of or effort for the particular disabilities. Others, for example in Contra Costa County are creating several curricula to meet the needs of various disability types, learning level, and ages of the children.

            Los Angeles County Office of Education is completing a Preschool Abuse Prevention Program for Disabled Children , that addresses Teachers, Parents and Children. It addresses learning styles and need for repetition and reinforcement,  and is sensitive to disability issues. It offers training in regard to physical, emotional and sexual abuse, as well as neglect.

            It is a safe statement that most Special Education program staff have not received sufficient or appropriate training and support to recognize and act, to report suspected abuse.  Many
special education teachers and other disability specialists believe they must PROVE abuse prior to reporting.  This is not correct.  The belief, however, impedes action. It is reasonable
suspicion that is required, not proof.

            Dependent Adults also need training on what abuse is, how to recognize and report it to someone who can help.  Many programs mistakenly  focus  on  stranger  danger,  which,  for  those with a developmental disability, represent 1% of the perpetrators of abuse...I suppose these appear more "palatable" to community members who might complain.  But, since we know that 99% of the time the perpetrator is well known to and trusted by the person with a disability, a more appropriately focused program is indicated.

            Many professionals are unaware of the reporting law for dependent adults, and fail to secure help that can be made available.

SUMMARY AND RECOMMENDATIONS

            Laws are new, but abuse is not.  The child and dependent adult depend for their safety on external protectors, i.e., Regional Center Counselors, Special Education teachers, etc. It is imperative that these "protectors" know and understand abuse issues and feel they have the support they need to help these disabled victims of abuse.

            In this paper, there are many issues that have not been addressed:  following the report, how is the investigation handled by an investigator who may or may not have training and experience with people with developmental disabilities?  Many reports of abuse are simply "shelved" because the witness is disabled and is deemed unable to give a report that can be substantiated.

Many disabled victims are deemed not to be credible witnesses, once the case has been filed, and the case is dropped at that point.  Even in court, the prejudices of judge, jury, and others invalidate the case. What are the prevention training techniques that have been found effective with children and adults with developmental disabilities? What are the treatment needs and techniques recommended for this population?

            This paper was designed as a brief overview, to illuminate some of the issues and problems faced by the abuse victim with a developmental disability and the helping professional.  Certain recommendations flow from it:

            1.  Begin  to add "Disability" to  the categories such as race, and age, to report forms for child abuse.

            2.  Create  and  attend  training  programs  on  the identification of abuse, prevention, intervention and treatment, for this population.

            3.  Create an awareness among your colleagues, of this problem, and put some energy into the organizations that exist to combat this problem.

For more information about this topic, please feel free to contact me.

Nora J. Baladerian, Ph.D., M.F.C.C.
MENTAL HEALTH CONSULTANTS
2100 Sawtelle Blvd. #303-1
Los Angeles, CA 90025
Office: 310 473 6768
FAX: 310 996 5585
Email: Nora@disability-abuse.com