The SANE Response to Patients with Intellectual/Developmental

New Mexico Coalition of Programs, Inc. This project was supported by Grant No. 2007-WF-219 S.T.O.P. Violence Against Women awarded by the New Mexico Crime Victims Reparation Commission ACKNOWLEDGEMENTS We would like to thank the following individuals for their participation and support during the development of this project: Marcie Davis, MS Davis Innovations, Inc.

Scott J. Modell, Ph.D. California State University, Sacramento

Rob Kellar, RK/OB Productions

Connie Monahan, MPH New Mexico Coalition of Sexual Assault Programs, Inc.

Jennifer Searcy Albuquerque SANE Collaborative

Jill Ryan, Ph.D. New Mexico Department of Health Office of Behavioral Services

Mark Gordon, New Mexico Department of Health Office of Behavioral Services

Kim Alaburda, Executive Director New Mexico Coalition of Sexual Assault Programs, Inc.

Katie Bridgewater Davis Innovations, Inc.

Franz Freibert, Ph.D. Davis Innovations, Inc.

Jessica Jensen Davis Innovations, Inc.

A special thank you is extended to all of the Self Advocates who participated in the development of this project.

This project was supported by Grant No. 2007-WF-219 S.T.O.P. Violence Against Women awarded by the New Mexico Crime Victim Reparation Commission. For more information regarding this project, please contact: Marcie Davis, Project Director Davis Innovations, Inc. 59 Wildflower Way Santa Fe, New Mexico 87506 Voice 505.424.6631/Fax 505.424.6632 www.davisinnovates.com DEFINITIONS AND TYPES OF INTELLECTUAL AND DEVELOPMENTAL DISABILITIES (I/DD)

An intellectual/developmental (I/DD) is attributable to a diverse group of mental and/or physical limitations that are manifested in an individual prior to the age of twenty-two, are usually life-long, may or may not involve lowered IQ and cognitive difficulties, and impact activities of daily life such as: • • receptive and expressive language • economic self-sufficiency • learning • mobility • language • self-help • self-care.

Mental Retardation. Different classification systems are used to describe and categorize individuals with disabilities in cognitive (intellectual skills) and adaptive (social, conceptual, practical and practical skills) functioning. While the professionals in the field have struggled to achieve consensus about the most useful systems of classification, the terms developmental disabilities, mental retardation, and intellectual disabilities are used almost interchangeably.

The degree of severity of Mental Retardation is determined by IQ level and decreasing ability in adaptive functioning levels. • 70-55 Mild • 54-40 Moderate • 39-25 Severe • 25 and below Profound

For individuals with a diagnosis of mental retardation, IQ alone does not dictate level of function and should be viewed as one of several dimensions used to determine level of severity of disability. For example, an individual with an IQ of 35 (in the severe range) can function much higher than an individual with an IQ of 68 (mild range). If an individual with a low IQ was raised in an environment where he was expected to dress himself, perform chores, and be as independent as possible, he would most likely function at a higher level than an individual with a higher IQ who was raised in environment where there were minimal expectations and everything was done for him. In short, understanding the victim’s history and overall level of function might help the SANE in conducting a successful exam.

Autism Spectrum Disorders (ASD). According to the APA (2000), there are three areas where disrupted development is characteristic of Spectrum Disorder. These areas are social interaction, communication, and restricted repetitive and stereotyped behaviors, interests, or activities.

______The SANE Response to Sexual Assault Patients with Intellectual/Developmental Disabilities Page 3 Communication characteristics seen in individuals with ASD include total lack of spoken language, adequate speech without the ability to initiate or sustain a meaningful conversation, echolalia (repeating spoken words or phrases) or other repetitive, idiosyncratic or stereotyped speech. Individuals with ASD may use alternative methods to communicate such as modified sign language, picture board, or other means. The ability to communicate varies significantly among individuals with ASD. Typically, as anxiety increases, difficulties in communication increase. It is important to have the victim be as calm as possible during an interview as this will reduce maladaptive behavior and may increase communication.

Additionally, most individuals with ASD have some form of sensory integration disorder. That is, they may have unusual sensitivity to various environmental stimuli such as lights, sounds, textures, and touch. Some individuals may find certain types of touching (e.g. light touch), textures (e.g. cold speculum), or multiple sensory input (e.g. all the sights and sounds in a hospital) very toxic. As level of anxiety increases, so may sensitivity to environmental stimuli. Information gleaned from a caregiver prior to the SANE medical exam may facilitate a more effective and calmer environment.

Similar to mental retardation, individuals with autism fall on a spectrum of function from high to low. Multiple factors dictate an individual’s level of function. These include history, education, communication level, early intervention history, sensory integration intervention, associated secondary disabling conditions, and functional behavior plans.

In addition to mental retardation and Disorder, other disorders that are categorized as an I/DD include; , various genetic and chromosomal disorders, and Fetal Alcohol Spectrum Disorders. There are many social, environmental and physical causes of I/DDs and for some individuals a definitive cause may never be determined.

Factors that may influence the development of an I/DD include: „ Pre-natal maternal/fetal factors • Drug abuse, including excessive alcohol intake and smoking • Neurotoxic exposures, methylmercury exposure • Malnutrition, poor diet • HIV/AIDS, illness, infections • Physical and/or emotional abuse „ Genetic conditions, such as • • • Prader-Willi syndrome • Williams syndrome „ Birth-related-factors • Premature birth • Oxygen deprivation at birth (anoxia) • Neurtoxic Exposure • Head injured (forceps delivery. ect.) • Early familial/environmental neglect or abuse

______The SANE Response to Sexual Assault Patients with Intellectual/Developmental Disabilities Page 4 „ Autism Spectrum Disorders „ Childhood • Poverty and/or poor diet • Lack of health care • Abuse and/or neglect • Metabolic disorders

SEXUAL EXPRESSION OF INDIVIDUALS WITH I/DD: MYTH VS. REALITY

Many factors influence the way in which the actions of individuals with I/DD are perceived if the activities are sexual in nature. The following myths could influence the way in which events are reported as a sexual assault.

Myths about Crime Victims with an Intellectual/ • People with I/DD are not sexually active and are not in romantic relationships. • People with I/DD are child-like and incapable of a sexual relationships. • People with I/DD are incapable of learning about safe sex or using birth control effectively. • If individuals with I/DD are allowed to have sex, they will have children that will be a burden on society and decrease the IQ of the country. • Men with I/DD are incapable of controlling their sexual impulses and urges. • Victims with I/DD are not credible witnesses. • Victims with I/DD are not competent to testify against someone who abuses them. • Sex offenders do not perceive individuals with I/DD as sexual, desirable beings and will not assault them. • Individuals with I/DD are safe because no one would take advantage or abuse someone that is so defenseless. • Victims with I/DD lack the ability to make their own decisions or choices so all sexual relationships are by nature nonconsensual.

Realities about Crime Victims with an Intellectual/Developmental Disability • Individuals with an I/DD are more vulnerable to sexual boundary violations and abuse • Individuals with an I/DD can be taught and supported to protect themselves and report the violation to caregivers and/or the authorities. • Individuals with I/DD have many desirable characteristics and skills that make them sought-after partners in a relationship. • Individuals with I/DD can be caring partners and use critical thinking skills and good judgment to solve problems that arise in relationships. • Individuals with I/DD can learn about safe sex and use birth control effectively. • Individuals with I/DD can have meaningful relationships, engage in , and have children and families. • A victim with I/DD can provide useful information and be a good witness if properly prepared and provided adequate support.

______The SANE Response to Sexual Assault Patients with Intellectual/Developmental Disabilities Page 5

SEXUAL VICTIMIZATION: INCREASED VULNERABILITY

Often people with I/DD are at greater risk for sexual abuse and sexual assault. o They are often segregated and denied the friendships, family relationships and contacts with work colleagues that might help them or intervene on their behalf. o Individuals with I/DD who live with minimal assistance may be perceived as isolated and vulnerable by potential abusers. o Many people who are chronically victimized do not even know that predatory acts are illegal and condemned by society. o People with I/DD are more likely to be re-victimized by the same person, and more than half never seek assistance from legal or treatment services (Pease & Frantz, 1994). o Persons with I/DD may not know about available services and resources or their legal rights and they are less likely qualify to testify in court. o Individuals with I/DD face multiple obstacles and barriers to services, including the inability to articulate what happened and the lack of language to describe the victimization. o People with the more severe, disabling physical and cognitive conditions as well as older and younger people with I/DD are especially vulnerable. o The general public, including police officers, domestic violence and sexual assault providers, do not see individuals with I/DD as sexually attractive or sexually active, which makes reports of assault or abuse less likely to be taken seriously.

There is a growing body of research that indicates that overall crime rates against individuals with disabilities are higher in institutional settings including group homes, schools, and other segregated facilities (Sorensen, 2002). According to Sorensen, the Roeher Institute found that “…People with disabilities may be at particular risk of victimization in these ‘safe’ arrangements” (2002, p. 3). Sorenson also concluded that “the risk of being sexually abused was two to four times greater in an institutional setting than in the community” (2002, p. 3). Sorensen (2002) also stated that there “is practical and concrete indication that major crimes against people with substantial disabilities are being reported at a much lower rate than for the general population” (p. 4). The author based this statement on an analysis of California’s Adult Protective System data and the National Crime Victimization Survey data, where less than 4% of serious crimes against individuals with disabilities were reported in California as opposed to 44% for the general population. Sorensen (2002) also cited the findings of Powers, Mooney, and Nunno who reported that “several studies suggest 80-85% of criminal abuse of residents of institutions never reach the proper authorities” (p. 4).

While statistics vary, all reports indicate that people with an I/DD are significantly more likely to be sexually abused than their same age peers. Among adults who have developmental disabilities, as many as 83% of the females and 32% of the males are the victims of sexual assault (Sigler, 2000). Fifteen to nineteen thousand people with developmental disabilities are raped each year in the United States (Sobsey 1994). Forty-nine percent of people with developmental disabilities who are victims of sexual violence will experience 10 or more abusive incidents in their life time. For individuals with psychiatric disabilities, the rate of violent

______The SANE Response to Sexual Assault Patients with Intellectual/Developmental Disabilities Page 6 criminal victimization including sexual assault was two times greater than in the general population (8.2% vs. 3.1%) (Hidday et. al. 1999). Although these numbers are staggering, only 3% of sexual abuse cases involving people with developmental disabilities are ever reported (Valenti-Hein & Schwartz 1995).

Many perpetrators are known by the victim, such as family members, acquaintances, residential care staff, transportation providers, and personal care attendants. The Arc of the United States reports that 97% to 99% of abusers are known and trusted by the victim who has an I/DD. While in 32% of cases, abusers consisted of family members or acquaintances, 44% had a relationship with the victim specifically related to the person’s disability. Therefore, the delivery system created to meet specialized care needs of those with development disabilities contributes to the risk of sexual violence (Baladerian 1991). The real problems of securing regular personal care staff leads to a revolving door situation, where new staff appear without introduction or training. Fear of reprisal from staff may lead some individuals with disabilities to deny and/or minimize abuse.

In surveys of women with disabilities, increased interpersonal violence was identified as another source of risk. The women surveyed reported comparable incidence rates of intimate partner violence, compared to women without disabilities. However, there are key differences in intimate partner violence between individuals with and without disabilities. Partner abuse between individuals with I/DD is often based in poor social and coping skills, underdeveloped positive self-image and/or self-confidence, and lack of adequate support for the relationship to succeed. Typically, the partner abuse of individuals with disabilities tends to be longer in duration, as the victim may not know enough about healthy relationships to understand she/he is being abused, as well as facing all of the other reasons individuals live with abuse amplified by their I/DD.

Additional factors that increase the risk for sexual abuse of individuals with I/DD include: • learned passivity and “institutionalized” behavior • poor understanding of social boundaries • denial of access to appropriate socialization and sexuality education • mental illness • behavioral challenges • prior, unidentified instances of sexual abuse.

BARRIERS TO CARE

Societal Barriers Societal barriers refer to the organized exclusion of individuals with I/DD from mainstream social activities and discourse. Societal barriers take the form of:

• Invisibility and Marginalization – Individuals without disabilities often ignore individuals with I/DD, acting as if they were invisible. Discomfort with a disability on the part of individuals without disabilities causes them to literally and figuratively

______The SANE Response to Sexual Assault Patients with Intellectual/Developmental Disabilities Page 7 turn away. Individuals with disabilities are often marginalized in that they are not addressed directly or included in public discussion or decisions that impact their way of life.

• Infantilization – Individuals with I/DD may find that others assume they are incapable of communicating, have lower intelligence or are not independent in any aspect of daily activity. Individuals with I/DDs are sometimes treated as children by those without disabilities. Unwanted help may be forced on an individual with I/DD out of ignorance or to make the helper feel better.

Service Barriers Service barriers refer to the gaps in services and training that contributes to the exclusion of individuals with I/DD disabilities from participation in medical and social services and activities. Specific to healthcare, service barriers include:

• Lack of Training of Healthcare Providers – Few medical or nursing schools include organized curricula to address care of individuals with I/DD. If available, formal curricula is offered as an elective or as an isolated, singular lecture leading to a lack of systemic knowledge of appropriate, respectful and culturally competent treatment – including an awareness of the risk of abuse among individuals with I/DD.

• Transportation – Transportation resources are often limited. Appointments need to be made several days in advance and individuals may have to wait for rides. Individuals with I/DD may not be allowed to travel alone and there are often safety concerns. Transportation issues are particularly acute in the situation of an individual trying to escape a violent relationship.

COMPLICATIONS AND CHALLENGES

There are several challenges to responding to sexual assault when the patient reporting has an I/DD including: • Statistically, the perpetrator is most likely to be a family member, care provider or another individual with an I/DD • There might be a question about whether the patient was victimized, consented and then changed their , consented but is now feeling guilty, etc. Although the activity may have been initially consensual, the individual might have been “caught”, became afraid, and are now reporting that they were victimized • There may be very little information about what happened or there may be widely differing reports about what happened o the caregiver reporting might be hesitant to report accurately because they are afraid of reprisals or the caregiver might not have many details o the patient may be confused, may not know the words, and may not have a good sense of time, date, place, chronology even if carefully questioned

______The SANE Response to Sexual Assault Patients with Intellectual/Developmental Disabilities Page 8 There may be obvious physical signs indicating physical abuse or neglect, such as: • perineal bruising or hematomas • vaginal or cervical abrasions, reddening of cervix • scratches, cigarette burns • bruises under the upper arms, on the buttocks, or in central areas of the body • disheveled or unkempt appearance • pressure sores that are extensive, appear uncared for or are infected • catheters or ostomy appliances that have not been changed in many weeks • broken or old assistive devices

There may be other indicators or clues that can be obtained only from a carefully documented history:

• Encopresis (involuntary fecal soiling) when previously toilet trained • Enuresis (bed wetting, urinary accidents) when previously toilet trained • Oral sensory seeking (mouthing) behaviors that did not previously exist (e.g., thumb sucking, hand mouthing, etc.) • Oral sensory defensive behaviors related to previously non-aversive substances (e.g., dislike of food textures, brushing teeth, etc.) • Tactile seeking behaviors that did not previously exist (e.g., persistent touching of others, hugging, etc.) • Tactile defensive behaviors related to previously non-aversive objects (avoidance of touching with hands) • Proprioceptive seeking behaviors that did not previously exist (overly aggressive with body – e.g., humping ground, bumping others, etc.) • Proprioceptive defensive behaviors (e.g., avoidance of body contact) related to previously non-aversive actions (e.g., accidentally being bumped into) • Increases in echolalia (repeating phrases or words spoken during conversation) under previously non-stressful situations • Increased anxiety under normal conditions (may be indicated by behaviors such as pacing, rocking, fidgeting, disruptions in sleep, etc.) • Increase in self-regulatory behaviors (e.g., vocal , hand flapping, etc.) under previously non-stressful situations • Increase in self-injurious behaviors (e.g., skin picking, biting, etc.) • Increased sensitivity to visual (e.g., bright lights) or auditory stimuli (e.g., loud noises, sirens, music, laughter) • on new items or topics related to sex and/or sexual activity • Increased difficulties with everyday transitions

______The SANE Response to Sexual Assault Patients with Intellectual/Developmental Disabilities Page 9 THE SANE EXAM

When the SANE receives the initial telephone call or meets the patient at the SANE unit, there are two ways of indentifying whether a sexual assault patient has an I/DD:

1. Someone tells you (caregiver, parent, etc.)

2. There are indicators from the patient o cranial, facial or postural anomalies o behavior such as poor eye contact, repetitive mannerisms, impulsivity, difficulty paying o limited speech and/or limited vocabulary, repeating what was just said, getting stuck on a word or area of interest

The actual diagnosis or labeling of a patient’s disabilities is not the primary concern. The reason why a SANE would want to know details about an I/DD disability is so that the SANE follows appropriate procedures in obtaining consent, provides professional patient care, and supports the patient through the exam process.

OBTAINING CONSENT

According to the Third Judicial District Attorney Office, if an adult has an intellectual/developmental disability, it is presumed she or he can consent to a SANE exam just like any other adult unless it is proven by a court that the individual needs assistance with decision-making. If the court determines that an individual does need assistance making decisions then the state District Court in the county in which the individual resides will appoint a guardian. There are several types of court-appointed guardians in New Mexico including plenary, full or limited guardianships. Some individuals have a guardian to assist them with medical decisions and/or financial decisions. The most important thing a SANE can do regarding obtaining consent is to ask the individual if she or he has a guardian. For example: “Do you have a guardian?” or “Are you your own guardian?” If the individual does not understand the question or is non-verbal, then the SANE may ask a caregiver or someone who knows the individual whether or not he or she has a guardian. If a caregiver or someone who knows the individual is not available or if that person(s) is suspected as the abuser, additional information regarding guardianship is available. Please contact The Arc of New Mexico’s Guardianship Program at 505-883-4630 or the New Mexico Developmental Disabilities Planning Council’s Office of Guardianship at 505-476-7332.

______The SANE Response to Sexual Assault Patients with Intellectual/Developmental Disabilities Page 10 THE INTERVIEW

When interviewing someone with an Intellectual/Developmental Disability, consider the following: „ Use language that is understandable and verify understanding o Use simple vocabulary words and short sentences o Match questions/answers with individual’s level (ex. 2 or 3 word sentences) o Ask one question at a time and wait for the answer before proceeding o Check back for confirmation that the answer was understood

„ Patience and Demeanor o Be calm, do not rush the interviewee o Do not pretend to understand o Ask for clarification (e.g. repeat, ask for comment to be said in a different way) o Expect to take more time

„ Individuals with I/DD are very concrete o The SANE needs to clarify explicitly what the patient is talking about o “How” “why” and “if” questions can be difficult o Avoid double negatives o Avoid conversational punctuations like (“really? or I see or you don’t or good”) they may be taken literally o When possible, avoid pronouns – use proper names for people, locations and acts

„ Individuals with I/DD frequently try to say whatever authority figures want to hear o Keep body posture, voice tone and facial expressions neutral o Augment the patient’s responses with open-ended requests for further description

„ Individuals with I/DD may perseverate (hyperfocus) on a particular topic or subject unrelated to the topic of discussion o Re-direct the victim if they perseverate off topic o Re-frame the question if it elicits an off topic discussion

„ Watch for signs of stress o Ex. increased withdrawal, distraction, fidgeting, humming, groaning, rocking, hand wringing, leg swinging, tapping, not answering questions

„ Be prepared for multiple short interviews. This may mean taking a break or changing the subject. Take clues from the caregiver as well as use your professional judgment: it may be helpful to inform the patient that you will give them a break or you might want to ask if the patient wants to take a short break.

„ Collect information from all possible sources o Who has defined the problem? o How long has it existed? o Why has the referral been made at this time?

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„ Be alert to: o Psychosocial stressors that occurred prior to the onset of the chief complaint o Losses, anniversaries of losses o Disruptions or changes in work, living, relationships o Underlying or changing medical conditions o Drug interactions

„ When “unwanted” behaviors are the source of the referral, be aware of: o The antecedents of the behavior o The environmental responses to the behavior o The individual’s responses to any previously attempted interventions o “Unwanted” behaviors may signal an interpersonal, physical, or environment problem

SUPPLEMENTAL TOOLS

For the interview of the patient’s narrative, the SANE may consider the use of supplemental tools that may be available at the SANE unit: anatomical dolls or picture book* of sex acts. If anatomical dolls or picture books are used to elicit information, the SANE should document the exact question(s) asked to the patient in the medical record. On a cautionary note, if the SANE intends to use either of these tools, specific training prior to use is strongly recommended.

The Professional Society on the Abuse of Children cites five acceptable uses of anatomical dolls and these uses seem applicable to adults with I/DD** who also have limited language and understanding of sexuality: • to help initiate discussions with the patient about sexual matters • as a model to assess a patient’s knowledge of bodily functions • to help patients demonstrate their experiences, which is particularly important when verbal skills are limited or when a patient is too embarrassed to describe what happened • as a stimulus for the patient’s memories • to provide patients with opportunities to spontaneously disclose details.

The sexual assault patient with an I/DD is typically afraid that they may get in trouble for being touched on a private part or engaging in a sexual act, which they have been almost universally taught is a bad thing to do. Through the use of an anatomical doll of a picture book of sex acts, the fear of reprisal can be minimized by distancing the act from the victim and expressing it in a less personal way.

Lastly, increasingly individuals with an I/DD are being provided with a “Personal Care Protocol” or comparable document that outlines personal activities that the individual can do for him or herself and what personal activities the individual may need assistance with and under what circumstances. These documents are powerful empowerment tools for individuals with an I/DD

______The SANE Response to Sexual Assault Patients with Intellectual/Developmental Disabilities Page 12 and provide guidelines on how the individual wants to be treated. The SANE should ask if the patient has one.

* In New Mexico, each of the SANE Programs has been provided a copy of the “Who, What, Where, When” A Symbol Book for Communicating with Survivors of Sexual Abuse Who Use Augmentative and Alternative Communication, published by the Iowa Coalition Against Sexual Assault.

**Note: It is important to remember that adults with I/DD should be treated as adults even though you are using techniques that are used with children. Additionally, adults with I/DD may function at a child level, but still have the life experience of an adult.

THE SANE MEDICAL EXAM

During the interview, the SANE nurse will want to take the time to identify what stimuli cause adverse reactions with the sexual assault patient with an I/DD and creatively plan for how to minimize the effects of external stimuli in the exam room. Basic things to consider include the temperature of the exam room, sounds, lights and shadows. It may also be helpful to have simple and concrete explanations for equipment and clinical techniques, in terms of how it might feel, what else it is like (i.e., this swab is like the cotton tip used to clean out your ear), how long procedures will take, and the purpose of your actions. Throughout, inform the patient that you can pause or take breaks for their comfort.

MEDICATIONS

Individuals with an I/DD may be currently on several medications or may have strong reactions to the idea of taking medications. If the SANE nurse identifies potential issues regarding the administration of STI or EC medication, she may contact her Medical Director or refer the patient and caregiver to the patient’s primary care provider for follow-up treatment related to STI and EC.

When responding to any sexual assault patient, it is important to keep in mind that each patient is unique and the goal is to make the SANE exam respectful and empowering to the patient. When responding to sexual assault patients with Intellectual/Developmental Disabilities, this is even truer. The SANE nurse should be prepared to slow down, apply critical thinking nursing skills, and take cues from both the patient and the caregiver when appropriate.

______The SANE Response to Sexual Assault Patients with Intellectual/Developmental Disabilities Page 13 REFERENCES

Americans with Disabilities Act Checklist for Readily Achievable Barrier Removal. (1995). Retrieved from Adaptive Environments Center, Inc. Web site: http://www.usdoj.gov/crt/ada/checkweb.htm

Commonly asked questions about the Americans with Disabilities Act. Retrieved from U.S. Department of Justice Civil Rights Division, Disability Rights Section Web site www.ojp.usdoj.gov

Deal, W.P. & Kristiansson, V. (2007). Victims and Witnesses with Developmental Disabilities and the Prosecution of Sexual Assault. American Prosecutors Research Institute 1 (3), 8.

Equal justice: Investigating and prosecuting domestic violence, sexual assault, and stalking crimes against individuals with disabilities in New Mexico. (2004). Albuquerque, NM: New Mexico Coalition of Sexual Assault Programs.

First response to victims of crime who have a disability. (2002, October). Washington, D.C.: U.S. Department of Justice, Office of Justice Programs, Office for Victims of Crime.

Hidday, V.A., Swartz, M., Swanson, J., Borum, R., & Wagner, H.R. (1999). Criminal Victimization of Persons with Severe Mental Illness. Psychiatric Services, 50, 62-68.

Hughes, C. M. (2002). Stop the violence; break the silence – A training guide. Austin, TX: SafePlace.

McAfee, J. K. (2002). Assisting victims and witnesses with disabilities in the criminal justice system. Temple University: The Institute on Disabilities, Pennsylvania’s University Center for Excellence in Developmental Disabilities.

Myers, L. (1999). Serving women with disabilities: A guide for domestic abuse programs. Houston, TX: Baylor College of Medicine.

National Victim Center. (1992). Rape in America: A report to the nation. National Victim Center: Arlington, VA.

NADD, Diagnostic Manual – Intellectual Disabilities: A textbook of diagnosis of mental disorders in persons with intellectual disabilities, (2007; DM-ID).

Pease, T. & Frantz, B. (1994). Your Safety…Your Rights & Personal Safety and Abuse Prevention Education Program to Empower Adults with Disabilities and Train Service Providers. Doylestown, PA: Network of Victim Assistance.

Sigler, J. I. (2000). Forced Sexual Intercourse Among Intimates. Journal of Interpersonal Violence, 15 (1).

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Sobsey, D. (1994). Violence and Abuse in the Lives of People with Disabilities: The End of Silent Acceptance. Baltimore, MD: Paul H. Brookes Publishing Co.

Sobsey, D. & Doe, T. (1991). Patterns of sexual abuse and assault. Sexuality and Disability, 9 (3), 243.

Sorensen, D. D. (2002, August 9). The invisible victims. Retrieved from http://odmrdd.state.oh.us/Includes/VictimsTaskForce/InvisibleVictims.pdf

Stimpson, L. & Best, M. (1991). Courage above all: Sexual assault against women with disabilities. Toronto: Disabled Women's Network.

Valenti-Hein, D., & Schwartz, L. (1995). Sexual abuse interview for those with developmental disabilities. Santa Barbara, CA: James Stanfield.

______The SANE Response to Sexual Assault Patients with Intellectual/Developmental Disabilities Page 15 DISABILITY RESOURCE LIST

New Mexico Resources

American Indian Vocational Rehabilitation Program New Vistas 1205 Parkway Drive, Suite A Santa Fe, NM 87505 505-471-1001 or 505-471-4427 800-737-0330 TTY/voice 505-471-4427 fax http://www.newvistas.org/home/index.php/Native-American-Services.html

The Arc of New Mexico 3655 Carlisle, NE Albuquerque, NM 87110 505-883-4630 505-883-5564 fax http://www.arcnm.org/index.php/about_us/ E-mail: [email protected]

Community Outreach Program for the Deaf 10601 Lomas NE Suite 115 Albuquerque, NM 87112 800-229-4262 TTY/voice, in-state toll free 505-255-7636 After Hours Emergency Referral Service: Albuquerque Area - 505-857-3642 Outside the Albuquerque Area – toll free 888-549-7684 http://www.copdnm.org/

Multiple Chemical Sensitivities Task Force of New Mexico P.O. Box 23079 Santa Fe, NM 87502 505-983-9208

NAMI (National Alliance for Mentally Ill) New Mexico 6001 Marble NE, Suite 8 Albuquerque, NM 87190 505-260-0154 http://www.nami.org/MSTemplate.cfm?MicrositeID=78 Email - [email protected]

New Mexico Abused Deaf and Hard of Hearing Advocacy Center 800-881-1008 TTY/voice

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New Mexico AIDS Services, Main Office 625 Truman St. NE Albuquerque, NM 87110 505-938-7100/toll free 888-882-AIDS (3497) http://www.nmas.net/

New Mexico AIDS Services, Farmington 3535 E. 30th St., Suite 127 Farmington, NM 87402 575-327-7043/toll free 888-929-0911 http://www.nmas.net/

New Mexico AIDS InfoNet www.aidsinfonet.org

New Mexico Commission for the Blind 888-513-7968 (Administrative Office, Santa Fe) http://www.cfb.state.nm.us/

Alamogordo Orientation Center 505-437-0401/toll free 888-513-7967

Albuquerque Office 505-841-8844/toll free 888-513-7958

Farmington Office 505-327-3031/toll free 888-513-7964

Las Cruces Office 575-524-6450/toll free 888-513-7960

Las Vegas Office 505-425-3546/toll free 888-513-7963

Roswell Office 575-624-6140/toll free 888-513-7961

Santa Fe Office 505-476-4479/toll free 888-513-7968

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New Mexico Commission for Deaf and Hard of Hearing Persons 2500 Louisiana Blvd. NE, Suite 400 Albuquerque, NM 87110 http://www.cdhh.state.nm.us/

Administrative Offices P.O. Box 5138 Santa Fe, NM 87502 800-489-8536 TTY/voice, (in-state toll free) 505-827-7269 TTY/voice (Santa Fe Office) 505-827-7273 fax

New Mexico Developmental Disabilities Planning Council 505-476-7321 1-800-311-2229 Toll free http://www.nmddpc.com

New Mexico Developmental Disabilities Planning Council Office of Guardianship 505-476-7332

New Mexico Department of Developmental Disabilities Supports Division 505-476-2400/toll free 877-696-1472 http://www.health.state.nm.us/ddsd/index.htm

New Mexico Department of Health Public Health Division 505-827-2389 http://www.health.state.nm.us/

New Mexico Environment Department Physical Address: 1190 St. Francis Drive Suite N4050 Santa Fe, New Mexico 87505 Mailing Address: PO Box 5469 Santa Fe, New Mexico 87502-5469 505-827-2855/toll free 800-219-6157 http://www.nmenv.state.nm.us/

______The SANE Response to Sexual Assault Patients with Intellectual/Developmental Disabilities Page 18 New Mexico Governor’s Commission on Disability 491 Old Santa Fe Trail Santa Fe, New Mexico 87501-2753 505-476-0412 TTY/voice 505-827-6328 fax 877-696-1470 in-state toll free http://www.gcd.state.nm.us/ Email: [email protected]

New Mexico Protection and Advocacy System 800-432-4682 toll free 505-256-3100 http://www.nmpanda.org/index2.html

New Mexico Relay System 800-659-1779 TTY/toll free voice 800-659-8331 TTY/toll free to voice 1-800-327-1857 TTY/toll free Spanish Speaking http://www.relaynm.org

New Mexico Technology Assistance Program NMDVR / NMTAP 435 St. Michael's Dr. Bldg. D Santa Fe, NM 87505 800-866-2253 505-954-8608 fax http://www.nmtap.com/

Rape Crisis Center of Central New Mexico Interpreter Services can be provided to your agency free of charge through the Rape Crisis Center of Central New Mexico. To arrange free interpreter services call: 888-811-8282 http://rapecrisiscnm.org/

Southwest Services for the Deaf 505-440-3512 Text/voice http://www.southwestdeafservices.com/

University of New Mexico - Center for Developmental Disabilities A University Center for Excellence 800-270-1861 505-272-3000 505-272- 5280 fax http://cdd.unm.edu/

______The SANE Response to Sexual Assault Patients with Intellectual/Developmental Disabilities Page 19 University of New Mexico - Information Center for New Mexicans with Disabilities 505-272 8549/ toll free 800-552-8195 http://cdd.unm.edu/babynet/index.htm Email: [email protected]

Regional and National Resources

ADWAS (Abused Deaf Women Advocacy Services) 206-726-0093 TTY only 206-236-3134 TTY Hotline Seattle, Washington http://www.adwas.org

Americans with Disabilities Act (ADA) Disability Law Resource Project 2323 S. Shepherd, Suite 1000 Houston, TX 77019 1-800-949-4232 713-520-0232 v/tty Also, Contact your local City and County ADA Coordinator (Santa Fe Office – 505-955-5743) http://www.dlrp.org/

Chemical Injury Information Network (National Organization) 406-547-2255 http://ciin.org

DRM Regional Resources Directory (National Resources) http://www.disabilityresources.org

Deaf Hope 470 27th Street Oakland, CA 94612 510-267-8800 TTY/voice 510-740-0946 fax http://www.deaf-hope.org

Deaf Vermonters Advocacy Services (DVAS) http://www.dvas.org

NICHCY – National Dissemination Center for Children with Disabilities (National Organization) http://www.nichcy.org/

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THOUGHTFUL REFLECTION

o List three factors that may lead to the development of an I/DD.

o Identify two challenges in responding to a sexual assault patient who has an I/DD.

o List three things to take into account when conducting the medical interview of a patient that has an I/DD.

o Describe at least one I/DD that may make verbal communication difficult and identify two strategies a nurse may apply to help facilitate communication.

o List three myths about individuals with I/DD and sexual activity and identify one that was unfamiliar to you when you first read it.

o Discuss at least three specific techniques you would feel comfortable using in interviewing a sexual assault patient with I/DD.

o Discuss what additional resources might be available to sexual assault patients who have an I/DD.

o If in a group setting, pair up with another participant and practice interviewing each other regarding a history of sexual assault/abuse. When role-playing as the patient, be cognizant of language, physical space, and external stimulators. Identify how you can tailor your interviewing techniques for different intellectual levels.

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