THE IMPACT OF ROSA’S LAW ON DESCRIBING PERSONS WITH
INTELLECTUAL DISABILITY
By
ANDREA LUTTER
Thesis Advisor: Anne Matthews, RN, PhD
Committee Members: Suzanne D. DeBrosse, MD Duane Culler, MS, PhD, CGC, LISW
Submitted in partial fulfillment of the requirements for the degree of
Master of Science
Department of Genetics and Genome Sciences
CASE WESTERN RESERVE UNIVERSITY
May 2014
CASE WESTERN RESERVE UNIVERISITY
SCHOOL OF GRADUATE STUDIES
We hereby approve the thesis/dissertation of
Andrea Lutter
Candidate for the degree of Master of Science*.
Committee Chair
Anne Matthew, RN, PhD
Committee Member
Suzanne D. DeBrosse, MD
Committee Member
Duane Culler, MS, PhD, CGC, LSW
Date of Defense
April 18, 2014
• We also certify that written approval has been obtained for any proprietary
material contained therein.
2 TABLE OF CONTENTS
ABSTRACT………………………………………………………………………………7
CHAPTER 1: Introduction……………………………………………….……………. 8
CHAPTER 2: Purpose, Aims, and Hypothesis………………………………..……...10
CHAPTER 3: Background
Mental Retardation/Intellectual Disability…………………………………... 11
Previous Studies …………………………………………………………….… 14
Rosa’s Law …………………………………………………………………….. 17
Significance to Genetic Counseling ………………………………………….. 18
CHAPTER 4: Study Design and Methods
Participants ……………………………………………………………………. 20
Questionnaire Design …………………………………………………………. 21
Data Analyses …………………………………………………………………. 24
CHAPTER 5: Results
Response Rate …………………………………………………………………. 26
Demographics …………………………………………………………………. 27
Interactions Between Parents and Genetic Counselors …………………….. 30
Use of Terminology …………………………………………………………… 30
Preferred Terminology ……………………………………………………….. 34
Terminology Used Based on Given Scenario ……………………………….. 43
Intellectual Disability vs. Mental Retardation ……………………………… 48
Policies and Rosa’s Law ……………………………………………………… 50
CHAPTER 6: Discussion
3 Discussion ……………………………………………………………………. 53
Limitations ……………………………………………...…………………… 59
Future Directions ………………………………………………………...….. 60
CHAPTER 7: Conclusions ………………………………..………………………….. 61
APPENDIX 1: IRB Approvals from University Hospitals Case Medical Center…. 63
APPENDIX 2: E-blast to Genetic Counselors …………………..…………………... 65
APPENDIX 3: E-mail message to Genetic Alliance Members ……….……………. 66
APPENDIX 4: Parent Invitation to Participate …………………..………………… 67
APPENDIX 5: Genetic Counselor Survey …………………………..………………. 68
APPENDIX 6: Parent Survey ……………………………………………..…………. 74
APPENDIX 7: Genetic Counselor Open-ended Responses ……………….……….. 79
APPENDIX 8: Parent Open-ended Responses ……………………………………. 135
APPENDIX 9: Definitions of Terms Used in Surveys ……………………………. 147
REFERENCES: …………………………………………………………………….. 151
4 TABLES
TABLE 1: Demographics of Genetic Counselors…...………….…………………… 27
TABLE 2: Demographic Characteristics of Parents…...………..………………...... 29
TABLE 3: Use of Terminology comparison between genetic counselors and
parents…………….……………………………………………………….. 31
TABLE 4: Other terms used by Genetic Counselors and Parents……….………… 33
TABLE 5: Parent and genetic counselors comparison of preferred term and
disliked term………………………………………………………………. 35
TABLE 6: Themes determined from choosing one preferred term of genetic
counselors and parents…………....………...…………………………..... 36
TABLE 7: Themes determined from disliked term explanation of genetic
counselors and parents…………..…….…………………………………. 38
TABLE 8: Common themes as to why genetic counselors use different terms in
four given scenarios……………………………………………………….. 45
TABLE 9: Common themes as to why parents use different terms in given
scenarios………………………………………………………………….... 47
TABLE 10: Themes identified in genetic counselor responses as to why
intellectual disability requires further explanation when used………… 49
5 FIGURES
FIGURE 1:
The order of rank indicating preference for each of eight terms for both parents and
genetic counselors……………………………………………………………… 40
6 The Impact of Rosa’s Law on Describing Persons with Intellectual Disability
Abstract
by
ANDREA LUTTER
Terminology used to describe individuals with Intellectual Disability (ID) is confusing as numerous terms are used to describe this diagnosis. This study explored if Rosa’s law, which states that “intellectual disability” should replace “mental retardation” in federal documentation, impacted terminology preferred by members of the National Society of
Genetic Counselors (n=310) and parents of individuals with ID from the Genetic Alliance
(n=88). Responding to on-line surveys, most genetic counselors (66.3%) preferred ID whereas parents (40.3%) preferred developmental delay (p<0.001). Genetic counselors chose ID as their most preferred term, but only 30% reported awareness of Rosa’s law.
Interestingly, of the 31 parents who reported awareness of Rosa’s law, only 13% preferred ID. No correlation between awareness of Rosa’s law and preferred terminology was found. While there was no consensus as to which term best described individuals with ID, identifying a unifying term may be beneficial in preventing confusion and clarifying diagnoses.
7 CHAPTER 1: Introduction
Finding the appropriate terminology to use to describe persons with mental retardation or intellectual disability has been a challenge not only for medical professionals, but society in general. The difficulty for most healthcare providers is utilizing a term that accurately describes a person’s intellectual capacities without being offensive to the person or family members. In an attempt to address this issue, Rosa’s
Law, which states:
“An act to change references in Federal law to mental retardation to references to
an intellectual disability, and change references to a mentally retarded individual
to references to an individual with an intellectual disability.” (U.S. Government
Printing Office, 2010). was signed by President Obama on October 5, 2010 (U.S. Government Printing Office,
2010). It was enacted in response to the efforts of a parent of a child with Down syndrome who felt the term “mental retardation” was demeaning and lobbied to have the term replaced with “intellectual disability” to describe an individual’s thinking ability
(Special Olympics, 2010). However, there are few studies that explore whether the law has impacted genetics providers or families.
The purpose of this study was to examine how Rosa’s Law has impacted parents’ and genetic counselors’ use of terminology when describing persons with intellectual disability. The study aimed to: 1) explore parents’ and genetic counselors’ current use of terminology to describe persons with intellectual disability; 2) gauge parents’ and genetic counselors’ opinions about the most appropriate term to describe persons with intellectual disability; 3) determine whether specific settings impact the choice of terminology when
8 referring to a person with intellectual disability 4) compare levels of awareness of Rosa’s law between parents and genetic counselors and assess if awareness of Rosa’s law impacts the preference of terminology used by genetic counselors and parents to describe individuals with intellectual disability.
Using an online survey adapted from a published instrument (Nash, Hawkins,
Kawchuk, & Shea, 2012), parents of children with intellectual disabilities and genetic counselors were recruited to determine their awareness of Rosa’s Law and what terminology they currently use to describe persons with intellectual disability.
Participants were also asked about preferences as to what terminology should be used in specific settings.
This study aimed to provide genetic counselors with insight into the terminology families of individuals with intellectual disability prefer be used to describe their family member’s thinking ability. It is anticipated that this will create a more accepting clinical environment for families to feel welcome to express their medical concerns without being offended by terminology used by their healthcare team.
9 CHAPTER 2: Purpose, Aims, and Hypothesis
The purpose of this study was to examine how Rosa’s Law has impacted parents’ and genetic counselors’ use of terminology when describing persons with intellectual disability/mental retardation.
The aims of this study were to:
1. Explore parent and genetic counselor current use of terminology to describe
persons with intellectual disability.
2. Gauge parents’ and genetic counselors’ opinions about what is the most
appropriate term to describe persons with intellectual disability.
3. Determine whether specific settings impact the choice of terminology when
referring to a person with intellectual disability.
4. Compare responses in the awareness of Rosa’s law between parents and genetic
counselors and assess if awareness of Rosa’s law impacts the preference of
terminology used by genetic counselors and parents to describe individuals with
intellectual disability.
It was hypothesized that genetic counselors were less likely to be aware of Rosa’s
Law, and still use the term mental retardation in a clinical setting. It was also hypothesized that parents were more aware of Rosa’s Law than genetic counselors and prefer a term other than mental retardation to describe their children’s thinking ability.
10 CHAPTER 3: Background
Mental Retardation/Intellectual Disability
Mental retardation, or more recently termed intellectual disability, occurs in approximately 2-3% of the population and is characterized by a cognitive ability that is below average (IQ<70) and a decreased ability to adapt to the environment (Daily,
Ardinger, Holmes, 2000). Genetics professionals play a major role in counseling families regarding the potential risk for or presence of intellectual disability in their children because of their genetic makeup. Recent advances in syndromic identification have resulted in genetic counselors providing services to increasing numbers of people with intellectual disability (ID) and their families (Simon, 2012).
Numerous terms have been proposed to describe persons with intellectual disability over the centuries including: idiot, fool, imbecile, feeble-minded, moron, and mental deficiency. It was not until 1921 that the medical community determined that the official term to describe this diagnosis should be mental retardation (Degeneffe &
Terciano, 2011). In the early 2000s, intellectual disability was proposed as a new term to describe persons with decreased cognitive abilities. The term intellectual disability is defined in exactly the same way as mental retardation in number, kind, level, type, and duration of the disability and the need of people with this disability for individualized services and supports; therefore, every individual who is, or was, eligible for a diagnosis of mental retardation is eligible for a diagnosis of intellectual disability (Schalock,
Luckasson, & Shogren 2007).
Finding a term to describe people with intellectual disability is a difficult process because the term needs not only to portray sensitivity but also specificity. In the past,
11 professional labels used to characterize persons with intellectual disability have been seen to be offensive, stigmatizing and marginalizing (Degeneffe & Terciano, 2011). It is important that we are sensitive to these individuals’ needs by using terms that promote inclusion, acceptance, and promote abilities. As important as it is to be sensitive to the terminology we use to describe people’s thinking abilities, it is important to make sure the terminology used is specific to the diagnosis and describes the person’s disorder in universal terms.
The concern to reevaluate and change the terminology used to describe intellectual ability has also become an issue identified by major medical societies and medical journals. The editorial board of the American Journal of Medical Genetics made the decision to institute the policy to use the term intellectual disability (rather than mental retardation) in all published manuscripts when referring to an individual who would have previously fit the criteria of a diagnosis of mental retardation (Carey, 2011).
The decision came after invited commentaries from colleagues in the United States and
Italy. Moeschler and Nisbet (2011) argued that a change in language from mental retardation to intellectual disability “would mean so much to people with disabilities and those who are close to them” (Moeschler and Nisbet, 2011, pg. 972). They argued that the term intellectual disability aligns with current practice that is “focused on functional behaviors, is less offensive, and is more consistent with international terminology” (pg.
972-973). These authors also stated that there is an obligation in the field of medical genetics to align practice and language with the desire for full inclusion and social acceptance (Moeschler & Nisbet, 2011). In opposition to this view, another invited commenter, Chiurazzi, asked the question “Is naming the real issue?” He argued that the
12 term “retard” in the U.S. had become a word that is stigmatizing, but in Italy, the term
“disabled” is considered offensive and has been increasingly substituted with the term
“differently able” (Chiurazzi, 2011, pg. 974). Chiurazzi encouraged the readers of the
American Journal of Medical Genetics to stop arguing about names and focus on the individual. The author concluded that there are no valid scientific reasons to substitute the term “mental retardation” for another term (Chiurazzi, 2011).
Of importance to healthcare providers and genetic counselors, the American
Psychiatric Association (APA) recently published the 5th edition of the Diagnostic and
Statistic Manual of Mental Disorders (DSM-5, 2013). As of May 14, 2013, the DSM-5 changed all terminology of ‘mental retardation’ to ‘intellectual disability (Intellectual developmental disorder)’ to describe persons with an IQ less than 70 (DSM-5 Coding
Corrections, 2013).
The previous edition of the DSM (DSM-IV-TR) describes mental retardation as significantly subaverage general intellectual functioning (IQ<70) that is accompanied by significant limitations in adaptive functioning in at least two of the following skill areas: communication, self-care, home living, social/interpersonal skills, work, leisure, health, and safety in person before the age of 18 years old (American Psychiatric Association,
2000). The DSM-IV-TR also specifies that mental retardation would not be diagnosed if an individual had an IQ less than 70, but did not display any significant impairment in adaptive functioning. A diagnosis of mental retardation can be made based on degrees of severity that range from mild to profound. The DSM-IV-TR defines mild mental retardation as an IQ level from 50-55 to approximately 70; moderate is an IQ level from
35-40 to approximately 50-55; severe is an IQ level from 20-25 to approximately 35-40,
13 and profound is an IQ level below 20-25 (American Psychiatric Association, 2000).
There is also a category of “mental retardation, severity unspecified”. This can be used as a diagnosis when there is a strong suspicion of mental retardation, but the person’s intelligence is untestable according to standardized testing (American Psychiatric
Association, 2000).
The DSM-5 replaces the term mental retardation with intellectual disability
(intellectual development disorder). It describes the essential features of intellectual disability (intellectual development disorder) as impairment in everyday adaptive functioning in comparison to an individual’s age, gender, and socioculturally matched peers with the onset being during the developmental period (American Psychiatric
Association, 2013). Included in the DSM-5 are tables that specify criteria of mild, moderate, severe and profound (pg. 34-36). The DSM-5 also uses an IQ score of 65-70
(70±5) as a cutoff for a diagnosis of intellectual disability (intellectual development disorder) while also specifying that clinical training and judgment are required to interpret test results of intellectual performance and the individual’s adaptive functioning level (American Psychiatric Association, 2013).
The only significant change the DSM-IV-TR and the DSM-5 is the term used to describe these individuals. The switch in terminology from ‘mental retardation’ to
‘intellectual disability’ set forth by the DSM-5 may impact terminology used not only in medical documentation, but also in clinical interactions with patients.
Previous Studies
Prior to gathering expert opinions, researchers investigated the general population’s opinions on which term should be used to describe persons with intellectual
14 disability. Panek and Smith (2005) surveyed students at a midwestern university and surrounding community (n=284) and asked what term was best to describe “the condition of mental retardation.” The study was undertaken to determine whether the general public would choose a term that could replace mental retardation in the future. The survey was sent to three separate groups: students in introductory psychology classes (n=40), students in advanced psychology classes (n=48), and members living in the community
(n=196). Results showed that the term “mentally challenged” was found to be as significantly more positively (p<0.001) evaluated compared to all other terms including: mentally retarded, intellectual disability, cognitive disability, cognitive-adaptive disability, and developmental disability. However, the authors did not account for whether respondents in the community did or did not have direct experiences with persons with intellectual disabilities. Knowing or working with a person with intellectual disability may influence a person’s preferences about the terminology used to describe such individual’s thinking ability.
Nash, Hawkins, Kawchuk, and Shea (2012) conducted a study in Nova Scotia to identify the preferences of healthcare professionals and parents about terminology used to describe persons with mental retardation. The authors’ goal was to assist professionals to make informed decisions about their usage of terminology when describing a child’s learning profile. The authors created a list of terms for participants from which to choose their preferred terminology, which included mentally retarded, mentally challenged, developmentally delayed, and intellectually disabled. This study surveyed both parents
(n= 52) and medical professionals (physicians, social workers, nurses, physiotherapists, occupational therapists, and psychologists) (n=101) at the IWK Health Centre in Halifax,
15 Nova Scotia. The participants were presented with a scenario in which participants chose their preferred answer in the situation presented. The survey found that the majority of parents (n=37) chose “developmental delay” as the most positive term, and medical professionals (n=79) chose “developmental delay” as the term they are most likely to use when talking to parents about their child when that child would meet criteria for mental retardation. The authors concluded that both parents and professionals are moving away from the use of “mental retardation”.
The authors reported that many professionals have been criticized for their use of the term mental retardation, but this study did not explore whether professionals have been criticized for not using the term mental retardation (Nash, Hawkins, Kawchuk, &
Shea, 2012). Also, this study did not investigate the terminology used in medical professionals’ written reports, which could be significantly different than the terminology used when discussing a clinical diagnosis.
As this study was completed in Canada, it may not reflect the views of healthcare professionals’ terminology use in the U.S. At the time this survey was conducted (2012), it was noted that the term intellectual disability was not commonly used or taught in this region of Canada. According to the authors, of the 101 professionals surveyed, 68 had been taught to use developmental delay, 48 had been taught to use mental retardation, 10 taught to use intellectual disability, and 15 reported they received no training on which term to use (Nash, Hawkins, Kawchuk, & Shea, 2012). However, the authors stated that the shift in terminology in the United States would appear to be in favor of using intellectual disability in place of mental retardation (Nash, Hawkins, Kawchuk, & Shea,
16 2012). This shift is evident through the signing of Rosa’s Law by President Obama in
2010.
Rosa’s Law
Rosa Marcellino, a child with Down syndrome, was the inspiration for legislation to eliminate the word “retarded” from Maryland state law. Rosa’s mother, Nina, was greatly upset that her daughter had been labeled as retarded at school. She lobbied with parents and the state delegates to pass a law in Maryland to eliminate the “R-word”.
These efforts influenced Senator Barbara Milulski (Maryland) and Senator Mike Enzi
(Wyoming) to propose legislation to change the wording in federal documentation from
‘mental retardation’ to ‘intellectual disability’, hence the law was named Rosa’s Law
(Special Olympics, 2010).
Rosa’s law changes all references of mental retardation to intellectual disability in federal statutes. Specifically, the law changed the language in the Higher Education Act of 1965, Individuals with Disabilities Education Act, Elementary and Secondary
Education Act of 1965, Rehabilitation Act of 1973, Health Research and Health Services
Amendments of 1976, Public health Service Act, Health Partnerships Act of 1998, and the Genetic Information Nondiscrimination Act of 2008. However, in changing the terminology to intellectual disability, the law states that it does not intend to change eligibility, coverage, rights, responsibilities, or definitions that once corresponded to persons with mental retardation. The law also states it does not intend to compel individual states to change their terminology in state law.
Although Rosa’s law did not mandate changes in state policies, multiple states have decided to create state policies to eliminate the use of the term “mental retardation”.
17 As of March 13, 2012, all but seven states in the US have introduced legislation to change terminology and delete the term “mental retardation”. (Joseph P. Kennedy Jr.
Foundation for the Benefit of Persons with Intellectual Disability, 2013).
Significance to Genetic Counseling
As genetic counselors are actively involved in the care and counseling of persons with intellectual disability, it is important that they be aware of what terminology parents prefer genetic counselors and other healthcare providers use to describe their child’s thinking ability, so that they do not use a term that would offend the parents or the patient. Therefore, it is appropriate to determine if there is a term that can be applied to describe these individuals that is agreed upon by both parents and healthcare professionals.
It is also important that genetic counselors be aware of new legislation such as
Rosa’s Law, as well as the laws in their states because some families may be very sensitive about terminology or highly involved in this issue. Although Rosa’s Law does not dictate what terms counselors currently use in genetic counseling sessions, this law may be a gateway to officially changing the terminology used to describe intellectual disability, including no longer using “mental retardation” in clinical settings.
Consequently, if a single standard term is defined, genetic counselors need to be aware of the change and adapt their practice to best serve their patients.
The National Society of Genetic Counselors created a Code of Ethics (2006) to help clarify and guide the conduct of a genetic counselor so that the goals and values of the profession might best be served. As part of the code of ethics, genetic counselors are to “respect their clients’ beliefs, inclinations, circumstances, feelings, family relationships
18 and cultural traditions.” This would include using terminology consistent with the patient’s preferences and beliefs. Genetic counselors are also required to continue their education and training through seeking sufficient and relevant information (National
Society of Genetic Counselors, 2006). Knowledge of new laws set forth by the federal government are a part of the necessary continuing education of genetic counselors.
Therefore, genetic counselors should be aware of the ever-changing terminology used both in federal and state documentation, as well as by their patients and their families.
This study was undertaken to assess which terminology is preferred by parents and genetic counselors to describe individuals with intellectual disabilities and to explore the influence of Rosa’s law on terminology usage by individuals working or living with persons with intellectual disability.
19 CHAPTER 4: Study Design and Methods
This descriptive, mixed methods study explored if parent and genetic counselor awareness of Rosa’s Law and their preferred terminology to describe persons with intellectual disability. Members of the National Society of Genetic Counselors (NSGC) and parents or guardians who are members of organizations associated with the Genetic
Alliance were invited to participate in this study.
Participants
The Genetic Alliance (GA) is a non-profit organization that encompasses more than 1,000 disease-specific advocacy organizations that have a genetic component
(Genetic Alliance, 2008). Many of these organizations represent disorders that include children who have an intellectual disability. The Genetic Alliance, through the assistance of Mary Beth McAfee, announced the study through the Genetic Alliance’s electronic network, which reached approximately 9,000 parents and group leaders within their organization. All parents and group leaders received an e-mail from the investigator through the President and CEO of the Genetic Alliance, Sharon Terry, inviting them to participate in the study (see Letter, Ms. Terry, Appendix 3). The e-mail included an attachment of the formal invitation to participate in the accompanying online survey
(Appendix 4). The survey remained open from November 21, 2013 until March 1 2014.
Genetic counselors who are members of the National Society of Genetic
Counselors (NSGC) were sent an invitation to participate via an eBlast service sent by
NSGC (Appendix 2) and a follow-up reminder message sent one month later. The survey remained open from November 4, 2013 until February 9, 2014.
20 Both online surveys were constructed using the Qualtrics Survey Software Suite
®. No identifying information was collected and participants were instructed not to include names, addresses, etc. Each invitation to participate emphasized the confidential nature of the study, that participation was voluntary, and that responses to the survey were anonymous.
Questionnaire Design
A modified version of the survey published by Nash, Hawkins, Kawchuck, and
Shea was used to develop questions for this study to gain insight regarding participants’ preferences and use of terminology used to describe a person’s thinking ability (Nash,
Hawkins, Kawchuk, & Shea, 2012). Permission was granted by Dr. Sarah Shea on
February 21, 2013.
Two separate surveys were created; one survey for parents and guardians of children with intellectual disability, and one for genetic counselors. Some of the same questions were included in both surveys.
The parent and guardian survey (Appendix 6) contained 24 questions with two questions consisting of multiple parts, for a total of 37 questions. Questions were displayed according to individual responses, therefore, not every individual had the opportunity to answer every question. In order to assess content readability, three persons in the general population reviewed the questionnaire and determined that the survey was clear and understandable. All of the questions were objective except two, which asked parents to explain why they chose a specific term. Additionally, participants had the opportunity to provide additional information or comments at the end.
21 The genetic counselor survey (Appendix 5) contained 24 questions with two questions comprised of multiple parts, for a total of 36 questions. Questions were displayed according to individual responses, therefore, not every individual had the opportunity to answer every question. In order assess readability and clarity of questions, two local genetic counselors reviewed the questionnaire. All of the questions were objective except when asked why they chose a specific term. Participants also had the opportunity to provide additional information/comments at the end of the questionnaire.
Each survey was divided into four sections. The first section of the survey consisted of specific demographic questions. The remaining three sections were focused to answer the aims of the study.
Aim 1: Explore parent and genetic counselor current use of terminology to describe persons with intellectual disability.
Parents and genetic counselors were asked questions regarding how often they used each provided term to describe persons with an intellectual disability. Parents and genetic counselors were given various settings in which they chose which term they used in each setting. Multiple choice and Likert scale questions were used. Likert scales were provided in level of agreement, i.e. Strongly Agree, Agree, Neutral, Disagree, Strongly
Disagree.
Aim 2: Gauge parents’ and genetic counselors’ opinion about what is the most appropriate term to describe persons with intellectual disability.
Parents and genetic counselors were asked to rank a list of given terms in order of most preferred term to least preferred term. They were also asked to select one term from the list, or provide their own term, that they preferred to describe persons with an
22 intellectual disability. Participants were also asked if they preferred the term “intellectual disability” in contrast to the term “mental retardation”. Multiple choice, Likert scale
(Strongly Agree, Agree, Neutral, Disagree, Strongly Disagree, and ranking questions were used.
Aim 3: Determine whether specific settings impact choice of terminology when referring to a person with intellectual disability.
Participants were given a scenario and asked to choose the preferred term that they use in that situation. Parents and genetic counselors were given space at the end of all the scenarios to explain why they chose different terms for different scenarios if this was the case. Separate scenarios were created for parents and genetic counselors. Parent scenarios were selected to explore terminology parents use to describe their child’s thinking ability with specific groups of individuals (family, friends, healthcare professionals). Genetic counselor scenarios were selected to determine if genetic counselors used different terminology with their patients as opposed to with their peers or in their documentation. Multiple choice and short answer questions were used.
Aim 4: Compare levels of awareness of Rosa’s law between parents and genetic counselors and assess if awareness of Rosa’s law impacts the preference of terminology used by genetic counselors and parents to describe individuals with intellectual disability.
Participants were asked their level of awareness of Rosa’s law using a given awareness Likert scale question. Answers between genetic counselors and parents were compared and contrasted. The response of awareness was also combined with the responses to the questions of Aim 2 to see if an awareness of Rosa’s law correlated with a
23 preference for the term intellectual disability. Multiple choice, Likert scale, and ranking questions were used.
Terminology choices presented in survey questions were those terms heard in clinical settings and those terms seen in the literature. Definitions of the eight terms are listed in Appendix 9. The definitions of these terms were not provided to survey participants
Data Analysis
Descriptive statistics, including means, frequencies, and percentages, were used to describe this study population. Quantitative analysis was used to compare questions asked within the populations of parents and genetic counselors and also between the two populations. Chi square analyses or Fisher’s Exact tests were used to determine significance with a p value of <0.05. All open-ended questions were qualitatively evaluated for themes, placed into categories based on themes found in responses, and reported according to each category (transcribed verbatim).
Descriptive statistics using means, frequencies and percentages were used to gauge parent and genetic counselor opinions about what they feel is the most appropriate term. Data were combined into four categories: intellectual disability, developmental disability, developmentally delayed, and all other terms. Chi square analysis was used to compare these four categories between genetic counselors and parents. Participants were also asked to rank all eight terms from most preferred to least preferred term. Means were determined for each term and ranked accordingly for both parents and genetic counselors. Parents and genetic counselors were also asked their most disliked term. Data
24 for most disliked term were combined into three categories: mental retardation, mentally handicapped, and all other terms. Chi square analysis was used to compare these three categories between genetic counselors and parents.
Questions in regard to terminology selection based off a given scenario were evaluated using descriptive statistics and means. Themes were derived and categorized for each group. Lastly, descriptive statistics and frequencies were used to describe the relationship between Rosa’s law and choice of preferred terminology. Chi square analysis was conducted in order to explore awareness of Rosa’s law between parents and genetic counselors. Data analysis was performed using SPSS for Windows version 20 and
Microsoft Excel 2011.
25 CHAPTER 5: Results
Response Rate
Genetic Counselor Survey
Data collection for the genetic counselor survey occurred from November 2013 to
February 2014, and 316 genetic counselors participated in this study. Six surveys were excluded from the study because no portion of the survey was completed. Therefore, 310 genetic counselors completed the survey. According to the National Society of Genetic
Counselors, the survey e-blast was sent out to 2,479 board certified genetic counselors and 39 e-mail addresses were returned as not valid. Therefore, the number of potential respondents was 2,440 genetic counselors. This information represents a response rate of approximately 13%.
Parent Survey
For convenience, this survey will be further referred to as the “Parent Survey” although one guardian did choose to participate. Data collection for the parent survey occurred from November 2013 to March 2014, and 95 parents or guardians participated in this study. Seven surveys were excluded from this study because no portion of the survey was completed. Therefore, 88 parents and guardians of individuals with an intellectual disability completed this survey. According to the Genetic Alliance, the invitation to participate was sent to approximately 9,000 parents and group leaders in the
Genetic Alliance network. It is difficult to determine the response rate for this survey because it is not known how many of the group leaders who were sent the original e-mail
26 message from the Genetic Alliance forwarded the survey invitation to their group members. It is also unknown how many of the 9,000 e-mail addresses were valid.
Demographics of Study Participants
Genetic Counselor Survey
Of the 310 genetic counselors who participated in this study, 97.4% were female and 94.2% identified themselves as White (Table 1). This demographic information is consistent with those collected by the National Society of Genetic Counselors in their
2012 professional status survey (National Society of Genetic Counselors, 2012). The mean age of genetic counselor participants was 34.91 years and the average length of experience as a practicing genetic counselor was 8.33 years. Participants represented a total of 40 states in the United States, the District of Columbia, and parts of Canada.
Table 1: Demographics of Genetic Counselors Variable n (%) Gender (n= 310) Female 302 (97.4%) Male 8 (2.6%)
Ethnicity (n=310) White 292 (94.2%) Asian-pacific Islander 10 (3.2%) Other 5 (1.6%) Hispanic 2 (0.6%) African American 1 (0.3%)
27 Parent Survey
Of the 88 individuals who completed the parent survey, 78 (88.6%) were the mother of an individual with intellectual disability, 9 were the father (10.2%), and 1 was the legal guardian of an individual with intellectual disability. The majority (92%) of participants identified themselves as White (92.0%) (Table 2). Participants represented a total of 19 states in the United States. The highest percentage of participants resided in
Ohio (52.9%), and the second highest percentage resided in California (13.8%).
Parents were asked questions about their child diagnosed with intellectual disability. If the individual answering the survey had more than one child with intellectual disability, they were asked to answer questions for their oldest child. Of the
81 participants who provided a diagnosis for their child 55.5% had a child diagnosed with
Down syndrome, and the second highest percentage of participants had a child diagnosed with autism spectrum disorder (13.3%) (Table 2). Parents were asked at what age was their child diagnosed with intellectual disability or a syndrome with intellectual disability.
Parents’ answers ranged from a prenatal diagnosis to a diagnosis at age 14. The average age of diagnosis was 1.18 years.
28 Table 2: Demographic Characteristics of Parents Variable n (%) Relationship (n= 88) Mother 78 (88.6%) Father 9 (10.2%) Legal Guardian 1 (1.1%)
Ethnicity (n= 87) White 80 (92.0%) African American 2 (2.3%) Hispanic 2 (2.3%) Asian-pacific Islander 2 (2.3%) Other 1 (1.1%)
Diagnoses of Child 1 (n=88) Down syndrome 45 Autism spectrum disorder 11 Cardio-facio-cutaneous syndrome 8 CHARGE syndrome 4 Cerebral Palsy 2 Macrocephaly-capillary malformation 2 syndrome Chromosome deletion 1 Costello syndrome 1 22q11 deletion syndrome 1 Kabuki syndrome 1 Metachromatic Leukodystrophy 1 Metabolic disorder 1 Phelan-McDermid syndrome 1 Propionic acidemia 1 Seizure disorder 1 Other 2 7 1 Participants were able to write in more than one diagnosis. 2 Other category includes those restating intellectual disability, developmental delay, global developmental delay, or mental retardation, and also those who listed diagnoses by abbreviation that were unable to be interpreted.
29 Interactions Between Parents and Genetic Counselors
The majority of genetic counselors (95.1%) reported having seen a patient with intellectual disability or had worked with a family to explain risks for intellectual disability in a child (n= 305). When asked to provide which term genetic counselors most often hear parents use to describe their child’s thinking ability (n=281) the majority said that parents used the term “developmentally delayed” most often (40.6%), followed by the term “mental retardation” (21.7%). Moreover, only 30.2% (n=284) of genetic counselors said that they agreed or strongly agreed with the statement, “I care which term a parent uses to describe their child with intellectual disability.”
Fifty-four parents (70.1%) reported that they had seen a genetic professional for the care of their child (n=77). Of those 54 respondents, the two most common terms parents reported hearing their genetic professional use to describe their child’s thinking ability were mental retardation (20.4%) and developmental disability (20.4%); however
11% of parents reported not remembering which term they heard the genetic professional use. The majority of parents (88.9%) stated that they agreed or strongly agreed with the statement that they cared about “which term a geneticist or genetic counselor chooses to describe their child’s thinking ability during an appointment”.
Use of Terminology
Genetic counselors and parents were given a list of terms (mental retardation, intellectual disability, developmental disability, developmental delay, intellectual developmental disorder, mentally challenged, mentally handicapped, and cognitively disabled) and asked to select how frequently they used the terms listed. Chi square
30 analysis or Fisher’s Exact test were used to determine if there was a difference in the use of terminology between genetic counselors and parents.
To determine significance in use of terminology, the responses for always, sometimes and never were compared between parents and genetic counselors. Of the listed terms given to participants regarding which terms they did or did not use, parents and genetic counselors differed significantly on five terms: mental retardation, intellectual disability, developmental disability, developmental delay, and cognitively disabled. No significant differences were found between parents and genetic counselors for the terms intellectual development disorder, mentally challenged, and mentally handicapped (Table 3).
Table 3: Use of Terminology comparison between genetic counselors and parents. Term/Group Always Sometimes Never P-value1 n (%) n (%) n (%) Mental Retardation <0.001 Genetic Counselor 29 (9.6%) 219 (72.3%) 55 (18.1%) (n=303) Parent 2 (2.7%) 2 (2.7%) 71 (94.7%) (n= 75) Intellectual Disability <0.001
Genetic Counselor 98 (32.6%) 185 (61.5%) 18 (5.9%) (n= 301) Parent 7 (8.9%) 38 (48.1%) 34 (43.0%) (n= 79) Developmental 0.036 Disability Genetic Counselor 28 (9.4%) 191 (63.9%) 80 (26.8%) (n= 299) Parent 14 (17.9%) 51 (65.4%) 13 (16.7%) (n= 78) Developmental Delay <0.001
Genetic Counselor 55 (18.3%) 221 (73.4%) 25 (8.3%) (n= 301)
31 Parent 25 (33.8%) 36 (48.6%) 13 (17.6%) (n= 74) Intellectual 0.939 Developmental Disorder Genetic Counselor 2 (0.7%) 23 (7.8%) 269 (98.2%) (n= 294) Parent 0 (0%) 5 (6.8%) 69 (93.2%) (n= 74) Mentally Challenged 0.234
Genetic Counselor 2 (0.67%) 31 (10.4%) 264 (88.9%) (n= 297) Parent 2 (2.7%) 9 (12.2%) 63 (85.1%) (n= 74) Mentally Handicapped 0.301
Genetic Counselor 1 (0.34%) 20 (6.8%) 275 (92.9%) (n= 296) Parent 0 (0%) 9 (12.5%) 63 (87.5%) (n= 72) Cognitively Disabled 0.014
Genetic Counselor 2 (0.68%) 79 (26.7%) 215 (72.6%) (n= 296) Parent 4 (5.3%) 24 (32.0%) 47 (62.7%) (n= 75) 1P-value from Pearson Chi-square testing or Fisher’s exact test (mental retardation) depending on expected cell sample size distribution. Analyses were conducted using 3x2 tables comparing each possible response (always, sometimes, and never) between parents and genetic counselors.
Both parents and parents were asked to list other terms they use to describe an individual diagnosed with intellectual disability. Forty-four genetic counselors provided another term that they use and twenty-three parents reported using another term (Table 4). Of these additional terms listed by genetic counselors, cognitive impairment was the most frequent (n=18).
32
Table 4: Other terms used by Genetic Counselors and Parents Group/ Term1 n (%) Genetic Counselors (n=44) Cognitive impairment/impaired 18 (40.9%) Learning disability 7 (15.9%) Learning problems 5 (11.4%) Cognitive disability 3 (6.8%) Developmental differences 2 (4.5%) Learning difficulty 2 (4.5%) Mentally impaired 2 (4.5%) Special needs 2 (4.5%) Cognitive delay 1 (2.3%) Cognitive deficit 1 (2.3%) Intellectual differences 1 (2.3%) Intellectual impairment 1 (2.3%) Intellectually challenged 1 (2.3%) Learning concerns 1 (2.3%) Learning issues 1 (2.3%)
Parents (n= 21) Cognitive delay 4 (19.0%) Atypical/ neuroatypical 2 (9.5%) Autism/Autistic 2 (9.5%) Special needs 2 (9.5%) Black/white, yes/no, no abstract 1 (4.8%) Cognitive disability 1 (4.8%) Cognitively impaired 1 (4.8%) Delays 1 (4.8%) Differences 1 (4.8%) Developmentally challenged 1 (4.8%) Developmentally distinct 1 (4.8%) Differently abled 1 (4.8%) Globally delayed 1 (4.8%) Intellectually different 1 (4.8%) Learns differently 1 (4.8%) On his own terms 1 (4.8%) Slow Learner 1 (4.8%) 1 Participants were able to write in more than one term, so values do not add up to 100%.
33 Preferred Terminology
Most preferred term
Genetic counselors and parents were asked to choose the one term that they most preferred to describe a person’s intellectual disability. Responses from both groups were compared using chi square analyses (Table 5). There was a significant difference between genetic counselors and parents (p< 0.001). Genetic counselors preferred intellectual disability (66.3%) followed by mental retardation (31.6%) (n= 267). No parent chose mental retardation as their one preferred term (n=72). Parents preferred developmentally delayed (40.3%) followed by developmental disability (27.8%).
34 Table 5: Parent and genetic counselors comparison of preferred term and disliked term. Term Preferred/Disliked Genetic Counselor Parent P- value1 Preferred: n=267 n=72 <0.001 Intellectual disability 177 (66.3%) 11 (15.3%) Mental retardation 31 (11.6%) 0 (0%) Developmentally delayed 25 (9.4%) 29 (40.3%) Developmental disability 14 (5.2%) 20 (27.8%) Cognitively disabled 4 (1.5%) 2 (2.8%) Mentally challenged 3 (1.1%) 0 (0%) Mentally handicapped 1 (0.4%) 1 (1.4%) Intellectual development disorder 1 (0.4%) 2 (2.8%) Other 11 (11.4%) 7 (9.7%)
Disliked: n= 244 n= 68 <0.001 Mentally handicapped 90 (36.9%) 8 (11.8%) Mental retardation 49 (20.1%) 58 (85.3%) Mentally challenged 42 (17.2%) 0 (0%) Intellectual development disorder 30 (12.3%) 0 (0%) Cognitively disabled 16 (6.6%) 0 (0%) Developmentally delayed 10 (4.1%) 1 (1.5%) Intellectual disability 1 (0.4%) 0 (0%) Developmental disability 0 (0%) 0 (0%) Other 6 (2.5%) 1 (1.5%) 1P-value from Pearson Chi-square testing. Categorical data were collapsed for preferred term into four categories: intellectual disability, developmental disability, developmentally delayed, and all other terms (4x2 table). These categories were then compared between parents and genetic counselors. Categorical data were collapsed for disliked term into three categories: mental retardation, mentally handicapped, and all other terms. These three categories were then compared between parents and genetic counselors (3x2 tables).
After selecting which term each participant most preferred, respondents were asked to explain why and what factors contributed to their choice in preferred terminology. Genetic counselor responses were categorized into five common themes: 1) best describes the diagnosis, 2) is politically correct or inoffensive, 3) accepted by expert organizations on the topic, 4) is familiar to others, and 5) other (Table 6). For genetic
35 counselors, the main theme identified as to why they chose their preferred term was because they felt the term was politically correct and inoffensive to use (76.7%).
In contrast, parent participants most often chose a term that “best described the diagnosis” (38.1%) followed by a term that is “inoffensive” (36.5%). Two other themes were found in the parent responses including: a term that noted a “range and variability of abilities”, and one, which reiterated the term, which was most preferred. The “other” category encompassed those answers that did not fall into a theme or did not answer the question.
Table 6: Themes determined from choosing one preferred term of genetic counselors and parents. Genetic counselors (n=116)1 Theme n (%) Example Response Politically correct, 89 (76.7%) GC Respondent 47: inoffensive At the current time it has the least negative connotation associated with it and seems to be the currently accepted "PC" terminology. Term best describes 84 (72.4%) GC Respondent 77: diagnosis I prefer mental retardation because it can be quantified with IQ. I would not use "developmental disability" or "developmentally delayed" because these are the most non- specific terms and may not necessarily be meant to indicate intellect, but could be used for gross motor skills, language, etc. Understood by most people 39 (33.6%) GC Respondent 242: My patient population understands what this means. It may not be the first term I use, but often fall back to it. Other terms may be better accepted among different groups, however,
36 this term tends to deliver the needed message. Accepted by expert 25 (21.6%) GC Respondent 11: organizations This is the preferred term by groups such as ARC. Also, the DSM and the federal government now use this term.
Parents (n= 63)2 Theme n (%) Example Response Term best describes 24 (38.1%) Parent Respondent 46: diagnosis It is accurate, non-threating, and puts emphasis on the development being abnormal, not the person. Inoffensive 23 (36.5%) Parent Respondent 78: It's not perfect but least offensive. Term shows range and 7 (11.1%) Parent Respondent 4: variability of abilities I think that most of these terms are too narrow to describe the range of things that could be going on. Cognitive disability seems like the biggest bucket to me. "Mentally" to me suggests mental health issues such as bipolar disorder or depression. Developmentally delayed suggests that a person will catch up which I think is usually inappropriate. Understood by most people 6 (9.5%) Parent Respondent 34: I think it is the best description that everyone can understand. Reiterating which term was 5 (7.9%) Parent Respondent 35: their most preferred I see it as a disorder, not a disability. 1 Genetic counselors were given space to write in their answer. Fifty-three responses fell into more than one theme and therefore values do not add up to 100%. Nineteen responses did not fall into one of the listed themes. 2 Parents were given space to write in their answer. Seven responses fell into more than one theme and therefore values do not add up to 100%. Nineteen responses did not fall into one of the listed themes.
37 Least preferred term
Both groups were also asked which term they disliked the most (Table 7). The majority of parents chose the term mental retardation (85.3%) as the term they most disliked (n=68). In contrast 20.1% (n= 244) of genetic counselors also chose mental retardation as the term they most disliked when describing a person’s intellectual disability (p<0.001). The term mentally handicapped (36.9%) was the most disliked term chosen by genetic counselors.
Parents and genetic counselors were also asked to explain their choice “most disliked” term. Responses were analyzed separately for common themes (Table 7). The most common factor that contributed to choosing a disliked term for both groups was the negative connotation associated with the term (Parents = 73.8%, Genetic counselors =
45.3%).
Table 7: Themes determined from disliked term explanation of genetic counselors and parents Genetic counselors (n= 181) 1 Theme n (%) Example Response Negative 82 (45.3%) GC Respondent 48: connotation Seems to have more negative associations for patients/families than other terms. Inaccurate to 52 (28.7%) GC Respondent 13: medical diagnosis It does not accurately describe many individuals in my opinion. Not understood by 31 (17.1%) GC Respondent 289: others The average person uses terms such as "slow"; intellectual development disorder is an especially difficult term to understand. It would have to be explained with other, more traditional wording.
Parents (n= 61) 2
38 Theme n (%) Example Response Negative 45 (73. 8%) Parent Respondent 29: connotation This term has been misused and abused by society that it now has a negative connotation. Term does not 12 (19.7%) Parent Respondent 79: describe child’s It seems limiting to say someone is abilities handicapped. Term is outdated 9 (14.8%) Parent Respondent 91: It's outdated. 1Genetic counselors were given space to write in their answer. Twelve responses fell into more than one theme, and therefore values do not add up to 100%. Twenty-nine responses did not fall into one of the given themes. 2Parents were given space to write in their answer. Twelve responses fell into more than one theme, and therefore values do not add up to 100%. Seven responses did not fall into one of the given themes.
Ranked terms
The terms mental retardation, intellectual disability, developmentally delayed, developmental disability, intellectual development disorder, mentally challenged, mentally handicapped, and cognitively disabled were listed for parents and genetic counselors to rank from one (most preferred term) to eight (least preferred term). For genetic counselors, the most preferred term was intellectual disability (x ̅ = 1.617) followed by developmental delay (x ̅ = 3.142) and developmental disability (x ̅ = 3.175).
The least preferred term for genetic counselors was mentally handicapped (x ̅ = 6.861), but for parents, the least preferred term was mental retardation (x ̅ = 7.492). Parents chose the term developmental delay as their most preferred term (x ̅ = 2.174). A direct comparison of the ranked terms of both genetic counselors and parents is shown in Figure
1.
39
Figure 1: The order of rank indicating preference for each of eight terms for both parents and genetic counselors. Rank one is most preferred term and rank 8 is least preferred term.
Possible factors influencing preferred term
Genetic Counselors
In order to evaluate other potential factors that may have influenced participants’ choices of most or least preferred terminology, age, years of practice, of and personal involvement with an individual who has intellectual disability, were examined. Genetic counselors were divided into four categories based on age: 1) ages 21 to 30, 2) 31to 40,
3) 41to 50, and 4) over age 50. The majority of each age group chose the term intellectual disability as the most preferred term to describe individuals with intellectual
40 disability. Based on these results there did not appear to be a correlation between genetic counselors’ ages and their choice of preferred terminology.
To see if there was a difference in length of practice and preference for the term intellectual disability or another term, genetic counselors (n=308) were divided into two categories based on length of practice: 1) practiced 4 years or less and 2) practiced 5 or more years. The distinction was made of 4 years or less because it correlates with the year 2010 when Rosa’s law was enacted. Forty-nine percent of genetic counselors had been practicing for 4 years or less. Of those genetic counselors practicing for less than 4 years (n=151), approximately 69% chose the term intellectual disability as their most preferred term. There was a statistical different between most preferred term of counselors who worked 4 years or less and those genetic counselors who had been working for 5 or more years (p< 0.001). Genetic counselors practicing for 5 years or more (n=157) were more distributed in their choice of terminology. While they chose the term intellectual disability as the most preferred term (44.6%), it was followed by the term mental retardation (11.5%) and developmentally delayed (11.5%).
The data were analyzed to determine if having a close family member or family friend diagnosed with intellectual disability would impact the choice of preferred terminology. Of the 310 participants who responded to this question, 78 reported having a family member or close family friend with intellectual disability; and of these genetic counselors the majority, 61.6%, chose the term intellectual disability as their most preferred term. Of those genetic counselors that reported they do not have a family member or close friend with intellectual disability, 68% still chose intellectual disability as the most preferred term. Based on these data, there is no correlation between having a
41 family member or friend with intellectual disability and the choice in preferred terminology (p= 0.324). The same was true when comparing the most disliked term for genetic counselors (mentally handicapped, 36.9%) regarding whether the counselor did or did not have a family member or close family friend with intellectual disability (p=
0.831).
Parents
Similarly to genetic counselors, two factors were examined for potential correlations between parental choices of preferred terminology: genetic diagnosis and negative experiences. As the majority of parents in this study had a child diagnosed with
Down syndrome, their responses were compared to respondents whose child did not have
Down syndrome. A statistically significant difference was noted, p<0.001, in the choice of preferred terminology. The majority (57.5%) of parents of a child with Down syndrome preferred the term developmentally delayed (n=40). Those parents whose child had a different diagnosis, the preferred term was developmental disability (33.3%) followed by the term intellectual disability (26.7%, n=30). The second most common diagnosis was autism spectrum disorder (11.5%, n=81). There seemed to be no one term preferred by the majority of parents with a child diagnosed with autism spectrum disorder.
Parents were asked if they had ever had a negative experience with the term mental retardation being used to describe their child’s thinking ability. About 48% of parents reported that they did have a negative experience with the term mental retardation
(n=71). Additionally the majority of parents, regardless of whether or not they had a negative experience, chose the term mental retardation as the most disliked term. Based
42 on this information it appears that there is no correlation with having a negative experience with the term mental retardation and choosing mental retardation as the most disliked term (p= 0.106).
Terminology Used Based on Given Scenario
Genetic Counselor Survey
Genetic counselors were given four different scenarios and asked to choose or write-in the term they would use in each scenario. Genetic counselors were not given the option to choose more than one term. If their term changed in different scenarios, the participant was asked to explain why their terminology changed.
In a medical setting when talking with a patient or the patient’s family, the term genetic counselors most often used was intellectual disability (58%) followed by developmentally delayed (27.2%). Only one participant reported using the term mentally challenged (n= 276). Sixteen genetic counselors chose to fill in another term that they would use in a medical setting, with the majority stating they would “mirror the language used by the patient” (37.5%).
In a prenatal or infant/early childhood setting when describing the potential intellectual disability in a patient, 43.3% (n= 275) of genetic counselors chose to use the term intellectual disability followed by developmentally delayed (30.5%).
The third scenario asked genetic counselors which term they would choose to use to describe a diagnosis of intellectual disability in a medical chart for formal documentation. Intellectual disability was the most common chosen term (55.2%) followed by mental retardation (23.5%) and developmentally delayed (14.1%) (n= 277).
43 The last scenario asked which term genetic counselors use when talking with colleagues about a patient’s intellectual disability. With colleagues, genetic counselors reported most often using the term intellectual disability (54.7%) followed by mental retardation at 23.6% (n=276).
If genetic counselors chose at least two different terms when answering the four scenario questions, they were asked to explain why their terminology changed.
Responses were received and categorized into seven themes. The seven themes described were: 1) the age of the patient, 2) mirroring another person’s terminology choice, 3) the knowledge or understanding of the audience, 4) policies or guidelines given, 5) using medically accurate terminology, 6) being sensitive to patients’ feelings, and 7) reiterating original chosen term. Table 8 outlines the seven themes, a typical response for this theme, and the frequency in which this theme was presented.
44 Table 8: Common themes as to why genetic counselors use different terms in four given scenarios (n= 167) Theme n (%)1 Example Response Mirroring another 48 GC Respondent 222: person’s terminology (28.7%) I try to mirror what terms the family uses, so I don't have a consistent phrase and chose the term and/or the families use most often. Knowledge or 46 GC Respondent 43: understanding of the (27.5%) Some patients do not understand the term audience Intellectual Disability, when that happens I use Mental Retardation and/or Developmental Delayed as all patients understand the meaning of one of those terms.
Using medically 31 GC Respondent 192: accurate terminology (18.6%) Mental retardation is a medical term with a defined IQ. As appropriate, I use that term. I tend to use "developmental delay" if that's what a parent of an affected child uses, though am comfortable with that language [mental retardation] if the child truly has mental retardation and not just developmental delay. Age of Patient 30 GC Respondent 101: (17.9%) Age of patient changes whether I refer to them as developmental delay or intellectual disability (IQ testing cannot be done in young children). Sensitive to patients’ 25 GC Respondent 56: feelings (15.0%) I try to be more cognizant and sensitive when using terms with patients as compared to being more descriptive in notes. Reiterating original 18 GC Respondent 82: chosen term (10.8%) I will typically use intellectual disability or cognitive disability.
Policies or guidelines 7 (4.2%) GC Respondent 296: given Same termed used as recommended per APA. 1 Thirty-three responses fell into more than one theme and therefore values do not add up to 100%.
Parent Survey
45 Parents were also given a set of four different scenarios and asked which term they would use in each situation presented. The scenarios differed from those given to genetic counselors and asked about the terminology parents themselves used when discussing their child with healthcare professionals, family and friends.
Parents were asked which term they would use when speaking to a doctor or nurse to describe their child’s thinking ability. Of the 80 participants who chose to respond to this scenario, the top choices in terminology were developmentally delayed (37.5%) and developmental disability (28.8%). Approximately 11.3% of parents said they would use the term intellectual disability in a medical setting when speaking with a doctor or nurse.
Participants also chose to use these two terms (developmental delay – 40.5% and developmental disability – 24.1%). However, 16 participants (n=79) reported using
“other” terminology including: using the name of diagnosis, i.e. Down syndrome, learning differences, or not using any terms describing thinking ability with family members. Similar results were found when asking what term parents use when discussing their child’s thinking ability with friends (n=79; developmentally delayed 44.3%, developmental disability 22.8%). Thirteen participants selected “other” terminology for this scenario and reported using the name of the diagnosis or not discussing their child’s thinking ability.
Lastly, participants were asked to choose the terminology that they would use to describe their child’s thinking ability when meeting someone for the first time (n=79).
Parents/ were consistent in reporting the most common terms they would use would be developmentally delayed (39.2%) and developmental disability (26.6%). Thirty percent of parents who selected “other” for this scenario (n=20) said they would not bring up
46 their child’s thinking ability. For example, one respondent said, “Really? If I were meeting someone for the first time, I would not even bring up the thinking ability of any of my children.”
If parents chose at least two different terms across the four scenarios, they were given the opportunity to explain why and what factors contributed to their change in terminology use. Answers as to why terminology changed based on a given scenario were divided into five categories: 1) knowledge of audience, 2) avoiding stigma, 3) reiterating the term originally chosen, 4) not using any term, and 5) other (Table 6). The “other” category includes 4 responses that could not be categorized. Thirty-five participants provided comments (Table 9).
Table 9: Common themes as to why parents use different terms in given scenarios (n= 35) Theme n (%)1 Example Response Reiterating original term 18 Parent Respondent 14: chosen (51.4%) It depends on who I'm speaking to if it’s the medical profession or any other profession it's intellectual challenged, if it's family or friends I use the term intellectual disability. Knowledge of Audience 10 Parent Respondent 42: (28.6%) Change term based on the best understanding of the audience, ie. doctor, family, or friend. Not Use Any Term 5 Parent Respondent 63: (14.3%) I don't feel the need to explain. Avoiding Stigma 4 Parent Respondent 1: (11.4%) It seems like "developmental delay" is an easier pill for people to swallow, and perhaps less stigmatizing, when it comes to talking with new people. 1 Parents were given space to write in their answer. Six responses fell into more than one theme and therefore values do not add up to 100%.
Intellectual Disability vs. Mental Retardation
47 Genetic counselors were asked to directly compare the two terms, intellectual disability and mental retardation. This study asked genetic counselors to what extent they agreed with the statement, “intellectual disability should be used instead of mental retardation when referring to persons with intellectual disabilities.” The majority of genetic counselors (81.7%, n=263), either agreed or strongly agreed that intellectual disability should be used instead of mental retardation (n=263). Parents were also asked to what extent they agree with the same statement. Similar to genetic counselors, the majority of parents (90.3%) agreed or strongly agreed with the statement.
Although genetic counselors reported that the term intellectual disability should be used instead of mental retardation, approximately three-quarters of genetic counselors felt that the term intellectual disability required further explanation when being used (n=
257). When asked to explain why intellectual disability does or does not require further explanation, the two most common responses were that people do not understand what the term intellectual disability means (23.1%), and it is necessary to explain what people with intellectual disability are able to do (25.8%; n=182). For example:
“It is always important to put any labels we use in perspective for the family. ID
just means that a person learns at a different pace or in a different way than their
peers. It does not mean that they cannot learn or that they do not retain what they
learn” (GC Respondent 16).
Other common themes as to why genetic counselors felt that the term intellectual disability needed further explanation included: 1) patients are not familiar with the term intellectual disability, 2) intellectual disability is too broad of a term and needs
48 clarification, and 3) sometimes the term mental retardation is needed to further explain the term intellectual disability (Table 10).
Table 10: Themes identified in genetic counselor responses as to why intellectual disability requires further explanation when used. (n= 182) Theme n (%)1 Example Response Explain what people with 47 (25.8%) GC Respondent 194: intellectual disability can do It should be more specifically defined if these are known features associated - whether it is speech/language, developmental, cognitive, etc. Patients’ do not understand 42 (23.1%) GC Respondent 67: the term intellectual In some cases, families may not disability know what this means, especially if they don't use the term, have no family history of the same, and/or if one of the parents/guardians also has an intellectual disability. Patients’ are not familiar 35 (19.2%) GC Respondent 35: with the term intellectual This is a relatively new term that disability takes the place of mental retardation, so it is not as familiar to the lay person. Explain intellectual disability 30 (16.5%) GC Respondent 85: with term mental retardation I often need to use both intellectual disability and mental retardation to help define it and make everything very clear for people. Once defined, I use intellectual disability in my conversations. Intellectual disability does 29 (15.9%) GC Respondent 46: not need explanation When I say it, patients understand. I've never had anyone ask for or indicate need for clarification. Intellectual disability is too 12 (6.6%) GC Respondent 30: broad It's a broad term that may require clarification. 1Thirteen responses fell into more than one theme, and therefore values do not add up to 100%.
49 Policies and Rosa’s Law
Some institutions have created policies or guidelines in regard to the usage of terms to describe an individual with intellectual disability. Approximately 9% of genetic counselors reported that there was a policy guiding terminology established at their institution (n=264). The majority of genetic counselors stated there was no policy governing terminology at their institution (47.5%), and 26.9% of genetic counselors did not know if any policies existed at their institution. Of the 24 genetic counselors who reported a known policy, 72% reported that there was a set guideline or that medical professionals were encouraged to use the term intellectual disability. Genetic counselor respondent 175 stated, “We were encouraged by the commissioner to stop using mental retardation and start using intellectual disability in all of our speech and writing.” Other policies listed by genetic counselors included policies that eliminate the term mental retardation from paperwork and state documentation (16%).
Based on Rosa’s law, federal agencies are to use the term intellectual disability instead of mental retardation in federal documents (U.S. Government Printing Office,
2010). Prior to providing a description of Rosa’s Law in the survey, genetic counselors were asked which term they felt should be used in state and federal publications.
Seventy-six percent of genetic counselors felt that intellectual disability should be the term used in state and federal documentation (n= 260) followed by mental retardation
(7.8%). Parents were also asked their preference as to which term they would like state and federal agencies to use in publications and documents to describe persons with intellectual disability. Of the 70 parents who participated in this question, the three most commonly chosen terms were almost evenly distributed with 20 participants choosing the
50 term intellectual disability, 19 choosing developmental disability, and 18 choosing developmentally delayed.
After being provided with the definition of Rosa’s law, 85.1% of genetic counselors (n=261) and 92.9% of parents (n=70) agreed or strongly agreed that mental retardation should be replaced by intellectual disability in all federal documentation.
Although most genetic counselors chose the term intellectual disability as the term to replace “mental retardation”, the majority of genetic counselors reported they had never heard of Rosa’s law (70%, n=263) prior to this survey. This is significantly different from the percentage of parents reported being aware of Rosa’s law (44.3%, n=70, p=0.007).
However there seemed to be no direct correlation between awareness and the choice of terminology.
Summary of Results
Based on these study data, genetic counselors noted using the term intellectual disability most often in their daily practice whereas parents appeared to use the term developmental delay most often. Also, genetic counselors and parents differed on what term they preferred to use when discussing a child’s thinking abilities. The majority of genetic counselors (66.3%, n=267) preferred the term intellectual disability whereas parents (n=72) preferred the term developmentally delayed (40.3%) and developmental disability (27.8%).
Almost all parents (85.3%, n= 68) chose the term mental retardation as their most disliked term; however, there was no correlation between disliking the term mental retardation and whether or not that parent had a negative experience with that term.
51 While parents chose mental retardation as the most disliked term, genetic counselors reported that they disliked the term mentally handicapped the most (36.9%) followed by mental retardation (20.1%) (n=244).
Genetic counseling participants also used different terms to describe a child’s intellectual disability depending on the counseling scenario. Most often, genetic counselors changed their terminology to mirror the terminology of the person with whom they were talking, or they adjusted terminology based on the person’s understanding.
Parents also agreed that choice of terminology would change based on a person’s understanding.
While parents were found to be more aware of Rosa’s law than genetic counselors
(p<0.007), genetic counselors preferred the term intellectual disability more than parents.
Therefore, there appears to be no direct correlation between awareness of Rosa’s law and preference of the term intellectual disability.
52 CHAPTER 6: Discussion
This is the first known American study to explore both genetic counselor and parent views on the terminology used to describe individuals diagnosed with intellectual disability. A previous study conducted by Spivak (Master’s thesis, May 2013) examined
“the terminology genetic counselors use when communicating about intellectual disability with patients” (Spivak, 2013). The author found that 56% of genetic counselors often or all of the time used the term intellectual disability and 37% often or all of the time used the term “mental retardation”. The results of this current study had similar findings in that genetic counselors (94.1%, n=280) reported they always or sometimes use the term intellectual disability more than all other terms. Intellectual disability was also the most preferred term of genetic counselors. This finding may be in part due to a shift in terminology by professional organizations and federal organizations, changing formal terminology from mental retardation to intellectual disability.
Intellectual disability has been proposed as the new term to replace the term mental retardation in describing the thinking abilities of individuals with an IQ less than
70 and a decreased ability to adapt to the environment. Rosa’s law, enacted in 2010, replaced the term mental retardation with the term intellectual disability in all federal documentation (U.S. Government Printing Office, 2010). This law was the first known federal law to cause a shift in terminology away from the term mental retardation. An aim of this present study was to explore the impact Rosa’s law has had on the genetic counseling community as well as with parents of children who have intellectual disability. Although most genetic counselors who chose the term intellectual disability as their most preferred term were aware of Rosa’s law, most genetic counselors who did not
53 know Rosa’s law also chose the term intellectual disability as their most preferred term.
Therefore, it does not appear that the enactment of Rosa’s law had a direct impact on genetic counselors’ preferred terminology regarding intellectual disability. Although, many genetic counselors stated that they prefer the term intellectual disability because this term is used by professional organizations such as the American Psychiatric
Association in the recently published DSM-5. This may indicate an “indirect” impact of
Rosa’s law on preferred terminology of genetic counselors; that is, counselors may have heard the term intellectual disability being used more often because of Rosa’s law, even if they are unaware that the term intellectual disability has been federally mandated. In addition, more parents were aware of Rosa’s law than genetic counselors. Parents preferred other terms such as developmental delay or developmental disability. This may be because Rosa’s law changes federal documentation language but does not specifically recommend the term intellectual disability be adapted into everyday language.
In this study, it was found that while parents preferred the terms developmentally delayed or developmental disability to describe their child’s thinking abilities, parents most often chose the term intellectual disability as the term they believe should be used in federal and state publications. Moreover, none of the parents chose the term intellectual disability as their most disliked term. Perhaps these data provide evidence that term intellectual disability could be the term that genetic counselors and parents might come to a consensus on utilizing in clinical settings as well as in all documentation.
Although there are no federal laws mandating persons to use the term intellectual disability to describe a person’s thinking abilities, genetic counselors in this study expressed that they change terminology based on the person they are speaking to and the
54 context of discussing a child’s intellectual disability. If speaking to a medical professional it may be more acceptable to use a term such as mental retardation, even though it has a negative stigma outside of the medical setting. Regardless of which term is used to describe intellectual disability, the term should be explained to parents that it is in reference to a lower IQ and not an individual’s physical development.
Based on the information collected in this study, most parents seem to prefer the term developmental delay to describe their child’s thinking abilities, although genetic counselors expressed some concern in using the term. Perhaps, genetic counselors’ concerns arise from the fact that medicine typically defines developmental delay as children under the age of six who are not meeting developmental milestones in learning or other areas of development. After the age of six, IQ can be measured and therefore a child can be evaluated and diagnosed with intellectual disability if an IQ is less than 70.
Age of a child was not provided to genetic counselors when they were asked to choose their preferred terminology. It is possible that if an age less than six years were listed, genetic counselors might have chosen the term developmental delay more frequently to describe the child’s thinking abilities.
Parents were given the opportunity to provide the current age of their child in this survey. Using current age in comparison to parents’ most preferred term, more parents, whose child was over the age of six, still preferred the term developmental delay.
However, these children were mostly diagnosed before the age of six. Overall, in this study most parents reported that their child was diagnosed with intellectual disability, or a syndrome with intellectual disability before the child was six years old. It is possible that at the time of diagnosis, genetic counselors and other medical professionals may have
55 used the term developmental delay to describe the child’s thinking abilities since IQ could not be measured. This may explain why some parents preferred to use this term.
Some parents explained their preference for using the term developmental delay as it allows for individuals with intellectual disability to be noted to still have the capacity to learn, but at their own pace. For example, Parent Respondent 29 reports:
“With my child's syndrome [cardiofaciocutaneous syndrome], each child is
different in how delayed they are. There are a few children that are delayed, but
catch up with peers later in life. Others don't. I choose the term "developmentally
delayed" as to not finalize my child's cognitive abilities as I do not know what the
future may hold for him.”
It is important for genetic counselors to understand that some parents may see other terms, such as intellectual disability and mental retardation, as terms that “finalize” their child’s ability to learn. On the other hand, some parents were aware that the term developmental delay may be misleading:
“I think that most of these terms are too narroe to describe the range of things that
could be going on. Cognitive disability seems like the biggest bucket to me.
"Mentally" to me suggests mental health issues such as bipolar disorder or
depression. Developmentally delayed dussests that a person will catch up which I
think is usually inappropriate.” (Parent Respondent 4).
Genetic counselors need to clarify these two different viewpoints. It may be useful to explain to parents that a diagnosis of intellectual disability (or any other term used) does not mean that a child will not learn, although they will be different in their abilities to learn. Moreover, there is a wide variability in the learning abilities of
56 individuals diagnosed with intellectual disability. Some individuals may never catch up to the learning level of their peers, but that does not mean that learning does not occur.
This study asked parents and genetic counselors to report what terminology they noted the other group using during previous encounters. It was interesting to note that genetic counselors reported that they heard parents use the term mental retardation in the clinic setting, but most parents reported never using this term. Parents reported preferring the terms developmentally delayed or developmental disability. The majority of parents also reported that the term mental retardation was their most disliked term. Conversely, when parents were asked which term they heard genetic counselors use, parents reported hearing the terms mental retardation and developmental disability most often. However, genetic counselors reported that they use the term intellectual disability most often. This discrepancy may indicate that genetic counselors and parents are using multiple terms during a session, or that neither counselors nor parents pay specific attention to each other’s choices of terminology. Genetic counselors also reported that they often mirrored the terminology of the patient. If patients are using the term developmental disability during a session and genetic counselors are mirroring this terminology, it would make sense that parents would report hearing their genetic counselor use the term developmental disability.
All terms listed as possible answers in the survey were used because they all have been used interchangeably for the term mental retardation. Some terms have formal definitions that may be slightly different from each other (Appendix 9). A few genetic counselors expressed that they felt the terms listed were not synonymous and therefore it was difficult to pick their most preferred term:
57 “I felt that the questions that used intellectual disability, developmental delay, and
developmental disability interchangeably are incorrect as these all have separate
meanings. The questions where preferences to rank these terms were not done
accurately as they aren't synonymous.” (Genetic Counselor Respondent 310).
Several genetic counselors expressed that they associated different characteristics and abilities of the individual with each term listed. For example, some genetic counselors associated ‘learning disabilities’ with terms like intellectual disability, when in reality intellectual disability is a synonym for mental retardation and learning disabilities are
“An individual’s ability to store, process, or produce information. Learning disabilities can affect one’s ability to read, write, speak, spell, compute math, reason and also affect an individual’s attention, memory, coordination, social skills and emotional maturity.”
(Learning Disabilities Association of America, 2014). For example, genetic counselor respondent 90 stated:
“To me, the term intellectual disability could refer to something as simple as a
learning problem, or someone who has minor difficulties in school that can be
overcome if they try harder. Mental retardation on the other hand, truly refers to
someone who has permanent disability that cannot be overcome.”
If genetic counselors are confused or unaware of the formal definitions of terms used in clinical settings or formal documentation, then this confusion may be transferred to patients during the counseling session. Clarifying definitions of each term and identifying one term may help to clear up some confusion.
58 Limitations
Limitations of this study include the small sample size of parents of children with intellectual disability. The survey was potentially distributed to over 9,000 individuals, but only 88 parents participated in this study. Most likely, the majority of parents of children with intellectual disability are not a member of the Genetic Alliance. Therefore, a limited population of parents was contacted for this study, and the use and preference of terminology may not be generalizable to the entire parent population.
While, parents were reached through the help of the Genetic Alliance, almost 56% of parent participants had a child with Down syndrome. Perhaps, this skewed distribution biased the study results, as the parents of children with Down syndrome were more likely to use the term developmental delay (p<0.001) than parents of children with other diagnoses. Individuals with Down syndrome fall within a wide variability of intellectual disability. Most individuals with Down syndrome fall into the more mild to moderate range. Therefore, if the child has a more moderate or mild intellectual disability, parents may feel the term “delay” better describes their child’s abilities to learn and adapt as opposed to a parent with a child who has more severe intellectual disability and may be unable to meet some intellectual milestones.
In addition, only 310 genetic counselors, of about 3000, completed the survey out of approximately 2,500 who are members of the National Society of Genetic Counselors.
Thus, responses reported in this sample may not be generalizable.
Another limitation of this study is that the term intellectual disability was used in the invitations to participate, all e-blast materials, and survey questions. The use of the term intellectual disability was used because it is the official term set forth by the DSM-5
59 and to ensure continuity of questions in both the parent survey and genetic counselor survey. The use of the term intellectual disability throughout the study materials could have biased responses toward the use of the term intellectual disability.
Lastly, the terminology choices included in this survey were limited. Further surveys might be created to include other terms such as “special needs” and “slow”.
Providing more options for possible terminology may give participants an opportunity to choose their “true” preferred term. Although few participants added the terms to their responses, when they did, the term emphasized the ability, not disability.
Future Directions
New terminology may arise in the future that may replace the term intellectual disability. It may be beneficial to repeat a similar study in the future in order to determine the most up to date terminology. It would also be beneficial to repeat the survey with a larger sample size.
A larger and more diverse sample size may be obtained by providing the survey to parents in a genetics clinic. Placing surveys within a clinic would give more parents who have seen genetics the opportunity to respond as opposed to just selecting those parents who are members of a online organization. Not all parents of children with intellectual disability have access to computers or access to membership of the Genetic Alliance.
Also, not all members of the Genetic Alliance have a child with Intellectual disability. It may be more informative to target groups like the American Association on
Intellectual and Developmental Disability or the National Down Syndrome Society where most members would have a child with some level of intellectual disability.
60 CHAPTER 7: Conclusion
The purpose of this study was to explore if awareness of Rosa’s law has impacted genetic counselors’ and parents’ choice in terminology used and preferred to describe individuals with intellectual disability. It was also anticipated that study results could aid in identifying a common term between genetic counselors and parents that could be used to best describe the medical diagnosis while not using a term that would be considered negative to a parent or family. This information is pertinent to the genetic counseling field because genetic counselors are actively involved in the care of individuals with intellectual disability.
Ninety-five percent (n= 305) of genetic counselors reported seeing patients with intellectual disability and use this terminology on a daily basis when counseling families about their child’s abilities, or counseling about the potential for a child to have intellectual disability. In order to prevent confusion with families and any possible confusion with other medical professionals, it may be beneficial to determine one common term for all genetic counselors to use in counseling sessions.
It is also important that genetic counselors become aware of the stigma attached to the specific terminology such as the term mental retardation. By recognizing the stigma of the term mental retardation, and acknowledging patient sensitivity to the term, genetic counselors can be consciously aware to find a different term other than mental retardation when counseling patients.
Agreeing upon one term may prove to be difficult because terminology used to describe individuals with intellectual disabilities has consistently been a “moving target” as time has progressed. A short time ago, mental retardation was the formal term used to
61 describe an IQ less than 70 and a decreased ability to adapt to the environment. Now, the term mental retardation has such a negative connotation based on the slang use of the term “retarded” in the general population that parents would prefer that the term not be used even in the medical setting. It is worth mentioning, that no parent chose the term mental retardation as their most preferred term. Though it may be difficult to agree upon one term, this study shows that parents would not prefer this term to be mental retardation. With the enactment of Rosa’s law and a change in terminology in the DSM-
5, the term intellectual disability has replaced mental retardation. What is not known is how long it may be before the term intellectual disability also becomes taboo in today’s society.
A balance must be maintained with any terminology used to describe patient functioning between being sensitive to the patient’s needs and emotions but to also maintain medical accuracy. Therefore finding a medically accurate term that allows optimal understanding of what is being described as well as being sensitive to the individual with intellectual disability is the true task that lies ahead.
Though a change in the use of some terminology in federal documentation or within the genetic counseling field may be a “quick fix” to the problem of stigmatization, the real issue lies within society utilizing inappropriate use of terms such as mental retardation. Therefore, an important step needs to be taken to educate society on the abilities of these individuals and terminology preferences of the parent population. By changing society’s negative views of this population and educating the public, parents may feel more comfortable with medical professionals using any term they deem medically accurate for their child’s diagnosis.
62 APPENDIX 1: IRB Approvals from University Hospitals Case Medical
Center
63
64 APPENDIX 2: E-blast to Genetic Counselors
Dear Genetic Counselors,
Your participation is requested for a research study exploring genetic counselors’ opinions regarding terminology used to describe persons with intellectual disability. It is anticipated that results of this study will provide data to genetic counselors to assist them in counseling families of children with intellectual disability, which in turn may document the need for further policies regarding this use of terminology.
Study participation involves an online, anonymous survey that will take approximately 15-20 minutes to complete. Participation is voluntary and you may also choose to exit the survey at any time. The targeted population for this study are genetic counselors who are full members of NSGC.
The link to the survey is provided below: https://cwru.az1.qualtrics.com/SE/?SID=SV_73sS1Iy9NTz9yUR
This survey is part of a Case Western Reserve University genetic counseling student’s master’s thesis and has received IRB approval. Please feel free to contact Andrea with any questions or comments.
Thank you very much for your time and consideration,
Andrea Lutter, B.S. Genetic Counseling Graduate Student Case Western Reserve University [email protected] (513) 332-7935
65 APPENDIX 3: Email Message to Genetic Alliance Members
Dear Genetic Alliance member:
My name is Andrea Lutter and I am a graduate student in the Genetic Counseling Training Program at Case Western Reserve University in Cleveland, OH. I am contacting you to ask for your assistance in posting a survey to your members regarding the terminology people use to describe individuals with intellectual disability. I have attached a brief description of my Master's thesis project and a link to a survey for parents of children with intellectual disability to participate in if they are interested. This research has been approved by the Institutional Review Board at University Hospitals Case Medical Center. If you have questions about my research project please feel free contact me at [email protected] or 513-332-7935 or you may contact my program director, Dr. Anne Matthews at 216-368-1821 or [email protected].
I would greatly appreciate it if you would copy and paste the attached letter and send it to your listserv.
Thank you so much for your help.
Andrea Lutter
66 APPENDIX 4: Parent Invitation to Participate
Invitation to parents, or caregivers of a child with intellectual disability to participate in the study.
Dear parent or caregiver of a child with intellectual disability,
We are writing to ask for your participation in a study about the words you use to describe persons with intellectual disability. There is limited research about the words or terms parents and guardians prefer when talking about intellectual disability. Gaining more knowledge in this area will help genetic counselors and other health care professionals have a better understanding of family members’ preference of the language used to describe their child’s thinking ability, thereby improving information provided to patients and families. This study will be carried out in the Department of Genetics at Case Western Reserve University as part of a graduate student Master’s thesis. The Institutional Review Board of the University Hospitals Case Medical Center has reviewed and approved this study.
This anonymous survey should take no more than 20 minutes to complete and answering this survey is completely voluntary. Your answers to the survey are anonymous and the responses will be kept confidential. Your answers will be kept confidential and will be reported only as summary statistics. If you are a parent/legal guardian, or caregiver of a child with an intellectual disability, we would greatly appreciate your participation.
There are no known benefits to you for participating in this study. Some questions may make you feel uncomfortable and may bring about difficult memories. You can choose to skip any questions or to exit the survey at any time. There is no cost to you for participating in the study, but you will not be paid to participate.
If you have questions or concerns about this study, feel free to contact either Andrea Lutter at [email protected] or call her at (513) 332-7935 or Dr. Matthews at [email protected] or at (216) 368-1821. If you would like to talk to someone from the Genetic Alliance, please contact Marybeth McAfee, Associate Director of Health Information for the Genetic Alliance at [email protected] or at (202) 966- 5557, ext. 219.
To complete survey, follow the link below. https://cwru.az1.qualtrics.com/SE/?SID=SV_9Lgl7DsTfOPJpwF
Thank you for your time,
Andrea Lutter, BS Anne Matthews, RN, Ph.D Graduate Student Associate Professor of Genetics Genetic Counseling Training Program Director, Genetic Counseling Program Case Western Reserve University Case Western Reserve University
67 APPENDIX 5: Genetic Counselor Survey
Section I: Demographics
1. Are you male or female? a. Male b. Female 2. What is your age? (years) a. ______3. What race/ethnicity do you most closely identify with? a. White b. African American c. Hispanic d. Asian-Pacific Islander e. Native American f. Other: ______4. How long have you been practicing as a genetic counselor? (years) a. ______5. The state where I work and practice is… a. ______6. I have a family member or close friend with intellectual disability. a. Yes, I do. b. No, I do not. Section II: The following questions are in regard to your experiences and current use of terminology to describe persons with an intellectual disability.
7. The term I use most often, at any time, to describe persons with intellectual disability is: (Please select an answer for each of the following terms) a. Mental Retardation i. Always, sometimes, never b. Intellectual Disability i. Always, sometimes, never c. Developmental Disability i. Always, sometimes, never d. Developmentally Delayed i. Always, sometimes, never e. Intellectual Development Disorder i. Always, sometimes, never f. Mentally Challenged i. Always, sometimes, never g. Mentally Handicapped i. Always, sometimes, never h. Cognitively Disabled i. Always, sometimes, never i. Other (If you do not use any other term please type N/A) i. ______
68 ii. Always, sometimes, never 8. I have seen a patient with developmental delay/mental retardation/intellectual disability for evaluation OR have worked with a family to explain risks for intellectual disability in their child. a. Yes b. No 9. IF YES TO QUESTION 8: The term I most often hear parents of children with an intellectual disability use to describe their child's thinking ability is... (Please choose one) a. Mental Retardation b. Intellectual Disability c. Developmental Disability d. Developmentally Delayed e. Intellectual Development Disorder f. Mentally Challenged g. Mentally Handicapped h. Cognitively Disabled i. Other: i. ______10. IF YES TO QUESTION 8: How strongly do you feel about the following statement: I care about which term a parent chooses to describe their child's thinking ability during an appointment. a. Strongly disagree b. Disagree c. Agree d. Strongly agree 11. For each scenario below, please choose the term that you use when describing a patient with an intellectual disability. a. In a medical setting when talking with a patient or the patient's family, the term I use to describe their child's intellectual disability is... (Please choose one) i. Mental Retardation ii. Intellectual Disability iii. Developmental Disability iv. Developmentally Delayed v. Intellectual Development Disorder vi. Mentally Challenged vii. Mentally Handicapped viii. Cognitively Disabled ix. Other: 1. ______b. In a prenatal or infant/ early childhood setting when talking to parents, the term I use to describe their child's potential intellectual disability is... (Please choose one) i. Mental Retardation ii. Intellectual Disability
69 iii. Developmental Disability iv. Developmentally Delayed v. Intellectual Development Disorder vi. Mentally Challenged vii. Mentally Handicapped viii. Cognitively Disabled ix. Other: 1. ______c. When documenting in the medical chart the term I use to describe a patient's intellectual disability is... (Please choose one) i. Mental Retardation ii. Intellectual Disability iii. Developmental Disability iv. Developmentally Delayed v. Intellectual Development Disorder vi. Mentally Challenged vii. Mentally Handicapped viii. Cognitively Disabled ix. Other: 1. ______d. When talking with colleagues, the term I use to describe my patient's intellectual disability is... (Please choose one) i. Mental Retardation ii. Intellectual Disability iii. Developmental Disability iv. Developmentally Delayed v. Intellectual Development Disorder vi. Mentally Challenged vii. Mentally Handicapped viii. Cognitively Disabled ix. Other: 1. ______12. If the terms you chose changed in different settings, please describe why or what factors contributed to your decision. a. ______
Section III: The following questions are in regard to your preference and opinion on what terminology should be used to describe persons with intellectual disability at any given time. 13. Please rank your preference for each of the terms used to describe persons with intellectual disability, with 1 being the most preferred term and 8 being the least preferred term. i. Mental Retardation 1. 1,2,3,4,5,6,7,8, ii. Intellectual Disability 1. 1,2,3,4,5,6,7,8,
70 iii. Developmental Disability 1. 1,2,3,4,5,6,7,8, iv. Developmentally Delayed 1. 1,2,3,4,5,6,7,8, v. Intellectual Development Disorder 1. 1,2,3,4,5,6,7,8, vi. Mentally Challenged 1. 1,2,3,4,5,6,7,8, vii. Mentally Handicapped 1. 1,2,3,4,5,6,7,8, viii. Cognitively Disabled 1. 1,2,3,4,5,6,7,8, 14. If I could choose only one term, my preferred term to describe persons with intellectual disability would be... (Please choose one) i. Mental Retardation ii. Intellectual Disability iii. Developmental Disability iv. Developmentally Delayed v. Intellectual Development Disorder vi. Mentally Challenged vii. Mentally Handicapped viii. Cognitively Disabled ix. Other: 1. ______15. I chose this term because… a. ______16. The term I specifically dislike is… (Please choose one) i. Mental Retardation ii. Intellectual Disability iii. Developmental Disability iv. Developmentally Delayed v. Intellectual Development Disorder vi. Mentally Challenged vii. Mentally Handicapped viii. Cognitively Disabled ix. Other: 1. ______x. There is no term that I specifically dislike 17. I chose this one term as one that I specifically dislike because... a. ______18. How strongly do you feel about the following statement: The term intellectual disability should be used instead of mental retardation when referring to persons with intellectual disabilities. a. Strongly agree b. Agree c. Disagree
71 d. Strongly disagree 19. Do you feel the term intellectual disability requires further explanation when using the term to describe a person's thinking ability or mental disability? Please briefly explain your response a. Yes, I do i. ______b. No, I do not i. ______Section IV: The following questions will ask your opinion about terminology used by your institution (i.e. place of work) and other state and federal agencies to describe persons with an intellectual disability. 20. Are there any policies/guidelines regarding use of terminology at your institution? a. Yes, there are. b. No, there are not. c. I do not know. 21. IF YES TO QUESTION 20: Could you briefly explain the policy below. a. ______22. The term I would like state and federal agencies to use in their publications and documents to describe persons with an intellectual disability is... (Please choose one) i. Mental Retardation ii. Intellectual Disability iii. Developmental Disability iv. Developmentally Delayed v. Intellectual Development Disorder vi. Mentally Challenged vii. Mentally Handicapped viii. Cognitively Disabled ix. Other: 1. ______23. I am familiar with Rosa's Law. a. Yes, I know it well b. I am somewhat aware of it c. No, I have never heard of it 24. Rosa's Law: "An act to change references in Federal law to mental retardation to references to an intellectual disability, and change references to a mentally retarded individual to references to an individual with an intellectual disability." (U.S. Government Printing Office, 2010). a. How strongly do you feel about the following statement: I agree that the term mental retardation should be replaced by the term intellectual disability in federal publications and documentation. i. Strongly agree ii. Agree iii. Disagree iv. Strongly Disagree
72 Please feel free to include any other thoughts or additional comments below.
73 APPENDIX 6: Parent Survey
Section I: Demographics
1. Are you male or female? a. Male b. Female 2. Are you the mother, father, or legal guardian of an individual with intellectual disability? a. Mother b. Father c. Legal Guardian 3. What is your age? (years) a. ______4. What race/ethnicity do you most closely identify with? a. White b. African American c. Hispanic d. Asian-Pacific Islander e. Native American f. Other i. ______5. What state do you live in? a. ______Section II: The following questions are in regard to your child with intellectual disability. If you have more than one child with an intellectual disability please answer these questions based on your oldest child with an intellectual disability.
6. How old is your child who has intellectual disability? (Type in number and then put "y" for years or "m" for months. For example, 9m or 14y) a. ______7. What is your child's clinical diagnosis (ex. Autism spectrum, Down syndrome, etc.)? a. ______8. At what age was your child diagnosed with intellectual disability or a syndrome with intellectual disability? (Type in number and then put "y" for years or "m" for months. For example, 9m or 14y) a. ______9. The word or term I use to describe my child's thinking ability is... (Please select an answer for each of the following terms) a. Mental Retardation i. Always, sometimes, never b. Intellectual Disability i. Always, sometimes, never c. Developmental Disability i. Always, sometimes, never
74 d. Developmentally Delayed i. Always, sometimes, never e. Intellectual Development Disorder i. Always, sometimes, never f. Mentally Challenged i. Always, sometimes, never g. Mentally Handicapped i. Always, sometimes, never h. Cognitively Disabled i. Always, sometimes, never i. Other (If you do not use any other term please type N/A) i. ______10. For each scenario below, please choose the word/term you use when describing your child's thinking ability. a. In a medical setting, such as talking to a doctor or nurse (ex. pediatrician or family doctor), the term I use to describe my child's thinking ability is... (Please choose one) i. Mental Retardation ii. Intellectual Disability iii. Developmental Disability iv. Developmentally Delayed v. Intellectual Development Disorder vi. Mentally Challenged vii. Mentally Handicapped viii. Cognitively Disabled ix. Other: 1. ______b. With family members, the term I use to describe my child's thinking ability is... (Please choose one) i. Mental Retardation ii. Intellectual Disability iii. Developmental Disability iv. Developmentally Delayed v. Intellectual Development Disorder vi. Mentally Challenged vii. Mentally Handicapped viii. Cognitively Disabled ix. Other: 1. ______c. When talking with friends, the term I use to describe my child's thinking ability is... (Please choose one) i. Mental Retardation ii. Intellectual Disability iii. Developmental Disability iv. Developmentally Delayed v. Intellectual Development Disorder
75 vi. Mentally Challenged vii. Mentally Handicapped viii. Cognitively Disabled ix. Other: 1. ______d. In a social setting, such as meeting someone for the first time, the term I use to describe my child's thinking ability is... (Please choose one) i. Mental Retardation ii. Intellectual Disability iii. Developmental Disability iv. Developmentally Delayed v. Intellectual Development Disorder vi. Mentally Challenged vii. Mentally Handicapped viii. Cognitively Disabled ix. Other: 1. ______11. If you change the term you use in different settings, please describe why or what factors contribute to your decision. a. ______12. I have seen a geneticist or genetic counselor for an evaluation of my child. a. Yes, I have. b. No, I have not 13. IF YES TO QUESTION 12: The term I most often hear my geneticist or genetic counselor use to describe my child's thinking ability is... (Please choose one) i. Mental Retardation ii. Intellectual Disability iii. Developmental Disability iv. Developmentally Delayed v. Intellectual Development Disorder vi. Mentally Challenged vii. Mentally Handicapped viii. Cognitively Disabled ix. Other: 1. ______14. IF YES TO QUESTION 12: How strongly do you feel about the following statement: I care about which term my geneticist or genetic counselor chooses to describe my child's thinking ability during an appointment. a. Strongly agree b. Agree c. Disagree d. Strongly disagree 15. I have had a negative experience with the term mental retardation being used to describe my child. a. Yes, I have b. No, I have not
76
Section III: The following questions ask your opinions about other persons with intellectual disability (i.e. not your child) 16. Please rank your preference for each of the terms used to describe persons with intellectual disability or a syndrome with intellectual disability, with 1 being the most preferred and 8 being the least preferred term. a. Mental Retardation i. 1,2,3,4,5,6,7,8, b. Intellectual Disability i. 1,2,3,4,5,6,7,8, c. Developmental Disability i. 1,2,3,4,5,6,7,8, d. Developmentally Delayed i. 1,2,3,4,5,6,7,8, e. Intellectual Development Disorder i. 1,2,3,4,5,6,7,8, f. Mentally Challenged i. 1,2,3,4,5,6,7,8, g. Mentally Handicapped i. 1,2,3,4,5,6,7,8, h. Cognitively Disabled i. 1,2,3,4,5,6,7,8, 17. if I could only choose one term to describe persons with intellectual disability or a syndrome with intellectual disability it would be... (Please choose one) i. Mental Retardation ii. Intellectual Disability iii. Developmental Disability iv. Developmentally Delayed v. Intellectual Development Disorder vi. Mentally Challenged vii. Mentally Handicapped viii. Cognitively Disabled ix. Other: 1. ______18. I chose this term because... a. ______19. The term I specifically dislike is... (Please choose one) i. Mental Retardation ii. Intellectual Disability iii. Developmental Disability iv. Developmentally Delayed v. Intellectual Development Disorder vi. Mentally Challenged vii. Mentally Handicapped viii. Cognitively Disabled ix. Other:
77 1. ______x. There is not term listed that I specifically dislike 20. I chose this term as one that I specifically dislike because... a. ______21. How strongly do you agree with the following statement: The term intellectual disability should be used instead of mental retardation when referring to persons with mental disabilities. a. Strongly agree b. Agree c. Disagree d. Strongly disagree
Section IV: The following questions will ask your opinion about terminology used by state and federal agencies to describe persons with intellectual disabilities. 22. The term I would like state and federal agencies to use in their laws, publications and documents to describe persons with intellectual disability is... (Please choose one) i. Mental Retardation ii. Intellectual Disability iii. Developmental Disability iv. Developmentally Delayed v. Intellectual Development Disorder vi. Mentally Challenged vii. Mentally Handicapped viii. Cognitively Disabled ix. Other: 1. ______23. I am familiar with Rosa's law. a. Yes, I know it well b. I am somewhat aware of it c. No, I have never heard of it 24. Rosa's law: "An act to change references in Federal law to mental retardation to references to an intellectual disability, and change references to a mentally retarded individual to references to an individual with an intellectual disability." (U.S. Government Printing Office, 2010). a. How strongly do you feel about the following statement: I agree that the term mental retardation should be replaced by the term intellectual disability in federal laws, publications and documentation. i. Strongly Agree ii. Agree iii. Disagree iv. Strongly disagree Please feel free to include any other thoughts or additional comments below. ______
78 APPENDIX 7: Genetic Counselor Open-ended Responses
All responses are shown as entered into the survey. All misspellings are transcribed verbatim.
Question #12[Genetic Counselor]: If the terms you chose changed in different settings, please describe why or what factors contributed to your decision.
Respondent 4: In a medical setting, I try to use more medical terminolgy. When I talk to families, I use the least offensive terminology or model my terminology after them (unless they use something really derogatory). Respondent 5: Some of it depends on age of the patient; for example, I would probably not use developmental delay for a 18 year old, or an adult. Respondent 6: I typically try to mirror he terminology that the patient/family uses. For instance, if I use ID but they continue to refer to it as a "learning dificulty" I will typically follow their lead. If they report that a family member was diagnosed with MR, I will continue to refer to MR though I might mention ID as a newer term that they may hear that has the same meaning. If it is a young child then DD may be more appropriate. Respondent 8: When I say cognitive disabilty to patients in a prenatal setting they almost never know what I am talking about; when I say mental retardation they do. Respondent 13: With documentation/charting, much easier to use established shorthands. When explaining to patients the potentail for delays, sometimes multiple terms need to be used. Respondent 15: Would use term parents used. Respondent 17: I reflect the term used by the fmily. I find that most families in my area are less familiar with the term intellectual disability and more familiar with mental retardation or developmental delay. Respondent 18: I usually model the terminology the parents use. I always use people first language. If parents do not use people first language, I still use it. Respondent 24: In most cases I use cognitive disability. If it is a young infant/child and I am talking about their potential for intellectual disability I may also use the term developmental disability because it is a little bit more general and often is the term I hear parents themselves use. In our documentations in the medical record we are required to use the term intellectual disability. Respondent 25: I will often match what my patient says. Or, I will use the term intellectual disability, but a family will not know what I am talking about, but will understand the term "mental retardation". Also, I do use the term "developmental delay"
79 BUT that is quite different from ontellectual disability. I don't consider them the same thing at all, so I will use that term when appropriate, but not to refer to intellectual disability. Respondent 26: Age of affected patient. Respondent 27: Patient with no direct experience have a hard time understanding the term "intellectual disability" and relate much easier to "mental retardation". Respondent 30: What specific syndrome we're talking about; parents'/family's cognitive abilities; words the parents use. Respondent 31: I am aware that "developmentally delayed" is not medically correct for patients who are over the age of 5, but I will use it with parents regardless of age. Respondent 34: I use MR in the chart so that there is no confusion as to what is meant. I use DD with patients of younger children because it is a kinder term. I use ID when describing possibilities of ID in unborn infant because of a change in terminology. Respondent 40: Even when talking to the same person or setting, I use different terms. I never just say "MR" to a family. I discuss what the term means and what the expectations are. If the intellectual disability is such that it will fall into the category of MR, I define why it would be considered that, make a comment that measuring a person by a single number/IQ is ridiculous, and then use other terms thereafter.. "learning challenges", intellectual challenges, DD, etc. Respondent 42: Mental retardation has negative social conotations but is a medically accurate description so I use with collegues/in records; I often use intellectual disabled in clinic, esp. if families use dev delay/intellectual delay. However, if I use "mental retardation" in clinic with a family without a family history, I will often explain that while socially it has negative connotations, I use it because it is medically accurate and not intended to be degrading or derogatory. Respondent 43: Some patients do not understand the term Intellectual Disability, when that happens I use Mental Retardation and/or Developmental Delayed as all patients understand the meaning of one of those terms Respondent 44: The parent's understanding or meaning of the different phrases vs medical professional's understanding. Respondent 46: I will use more standard language in a note or conversation with a physician, and more patient-friendly language with the patient. I also adjust based on the severity of the delay. Also, I am aware that patients have easier access to their records now, so all words chosen, regardless of audience, in written documentation are considered with matient in mind. Respondent 48: Mostly use intellectual disability, but if it is a young child and not yet clear that it is a permanent disability, may prefer developmentally delayed. Or if parent
80 used another term like cognitive disability, may use their language (as long as appropriate). Respondent 50: If it is an infant or young child I think using developmental delay is appropriate. But after a certain point I don't think that developmental delay applies, because it suggests there may be catch-up. Then I say that a patient has mental retardation or intellectual disability - I tend to mirror the terminology a parent/family uses. Respondent 56: I try to be more cognizant and sensitive when using terms with patients as compared to being more descriptive in notes. Respondent 57: I try to change my terminology based on the definitions of my terms. I would reserve using mental retardation for a child after about age 5 and use developmental delay prior to that. I will change terminology if the patient is old enough and has intelligence to know what is being discussed. I don't want to create negative feelings about their own condition. Respondent: 59: Some families who do not have a child with intellectual disability, do not understand what this term means. Therefore; I use the term mental retardation in a prenatal setting as well as intellectual disability as more people are aware of the term's meaning. Respondent 60: MR is the medical term that I was taught iit graduate school and thus the term I use in a medical setting with collegues, but this may have too much of a negative connotation to use around patients/families. Respondent 61: For parents with child with ID/MR, the difinition of ID is clear, as they live with it daily. In the prenatal setting, patients may not understand ID/DD, etc versus MR, as those terms are not as well-known. Respondent 63: Mental Retardation (MR) still has diagnostic purpose, as you can identify the level of MR and it makes sense across specialties. Intellectual Disability is the "PC" term and we tend to use that more with patients and their families. When documenting in medical records, MR is used when appropriate. Respondent 67: Although I believe I most often use the term intellectual disability, I will elaborate and/or use different terms/words with families if the family doesn't seem to understand what I've said. Respondent 69: The family's perception and societal perceptions of the different terms. Respondent 70: I've found that most of my patients (prenatal setting) don't know what I'm talking about if I use ID.. But they understand MR… it is more common in general public. Versus patients who have a child with a disability… they are more likely to have heard ID or may already be using that term (although I still think most parents still use MR).
81 Respondent 75: Generally, I try to use "intellectual disability" in all settings, but also feel it is important to reflect the family's understanding, and will try to reflect the family's terminology, even if it makes me uncomfortable. Of course, I try to educate, but sometimes getting information across, and helping a family understand what to expect is more important. With collegues, sometimes, I will use the abbreviation "MR", but try to use "intellectual disability" my default term in most settings, at least to start out. Respondent 76: Intellectual Disabilities is used medically but many families use developmental disabilities and I respond to the needs of each setting. Respondent 77: In my personal like I use "mental retardation" because this term was accepted when my sister was diagnosed with autism as a child and is the term I grew up knowing. As a genetics professional, I use "intellectual disability" because mental retardation seems to be taboo. Respondent 78: I worked with an uneducated population, mostly in spanish speaking. I used the mostly easily understood and translatable term always. Respondent 81: Age of the patient. Respondent 82: I will typically use intellectual disability or cognitive disability. Respondent 83: If parents use wording that I am comfortable using, I will use their wording during our session and occasionally in chart notes. Respondent 84: To me, developmental delay sounds softer than ID. I often forget that the term ID as I've been using developmental delay for a while, though I know they have different meanings in the medical community, so I try to use ID when talking to colleagues. Respondent 85: I take my cue from the parents/family. I use whatever term they use or understand. Respondent 89: Patients understanding what I mean by the terms I use. Respondent 90: In the prenatal setting I would most often use the term "mentall retardation" because that is a common term that people will appropriately relate to mental delays instead of physical delays. However, if I'm speaking with a patient who has a child with mental retardation, it may be more appropriate to use a phrase that is less "harsh"... such as "intellectual delays" or use the phrase that the parents use. Respondent 91: After age 3 health insurance will not cover the diagnosis of DD so I have to use ID. Respondent 93: I try to be sensitive to the language used by those around me. Respondent 95: I use intellectual disability. Respondent 101: Age of patient changes whether I refer to them as developmental delay or intellectual disability (IQ testing cannot be done in young children).
82 Respondent 102: Sensitivity to patient/family, accepted medical terminology. Respondent 104: Patient's do not understand the term intellectual disability, when I have used it they feel the child with have learning problems but understand when I say that they could have an intellectual disability like mental retardation. Respondent 107: I'd give consideration to what others are doing in our clinic, or to what the understandig of terms of those around is. Respondent 112: In younger children, usually talk about developmental delay because we don't always know if they will "catch up" and intellectual disability implies a permanent disabilty. Respondent 114: Developmental delay is only for children ages 5 and younger. Respondent 115: Level of patient understanding. Respondent 119: It changes based on the specialty area I'm practicing in (prenatal I always use "mental retardation" at some point, and may adjest my language based on patient response). During peds sessions it really depends on the age of a child and what a parent understands. If it is a new diagnosis, I will typically use "mental retardation" at some point. I use this term because it is something most of my patients understand the meanig of. Intellectual disability is not understood by my patient population, they have no idea what this means. I have tried using it and it is not understood. If a family is well aware of a child's developmental issues, I will use words other than MR. At other hospitals where patients are aware of the term "ID," it may be appropriate to use, however at the hospital I work at, it just isn't practical. Many of our patients still use the word "mongolism" to describe Down Syndrome or "Down Syndrome" to desribe all forms of mental retardation. Respondent 120: It's not absolute… I don't find intellectual disability and developmental delay to mean the same thing, nor are they mutually exclusive. Respondent 121: I think I was taught in school that the "correct" term evolves and changes over time. When I was I school, "mental retardation" was still the correct medical term, but I'm slowly starting to hear "intellectual disability" as the new "correct" term, so I 'm slowly changing my words. I usually say BOTH intellectual disability and mental retardation to parents, whereas in a medical setting to colleagues, I use MR still. I think ID probably sound less "jarring" than MR. Respondent 122: What the patient/family could understand, what they said, and the actual circumstances of the diagnosis/suspected diagnosis. Respondent 126: My first choice is to use intellectual disabilities. However, when patient's are Spanish speaking, "intellectual disability" is translated into our term "mental retardation". Also, when the patient uses MR, I tend to use MR.
83 Respondent 127: Will the proband catch up/lag further; educational level of parents; terminology used by parents; terminology used by other team members. Respondent 129: I use different terms based on the patient's age, level of impairment, parents' medical sophistication, and language the family uses. Respondent 131: I prefer the medical use of mental retardation, although patients may not choose to use that I use the term the patient is comfortable using but rely on MR or developmental delay (depending on age) for documentation purposes. Respondent 132: Trying to get away from using mental retardation but it is still in a lot of our automatic text for our notes. Respondent 133: I try to mirror the patient's language or the family's language. Respondent 134: While the term mental retardation is interpreted by some patients as offensive, the literature and medical practice generally uses this term. I feel that using the term mental retardation in a patient's medical chart makes the assessment clear to other providers. Healthcare providers are less likely to misinterpret the diagnosis and are not reading into the social stigmata attached to this wording when it is part of the patient's medical record. Respondent 135: Sometimes, I use the terms that the parents prefer or are the most comfortable or familiar with. While sensitivity is important, I feel that conveying accurate meaning and ensuring that families understand our explanations are the most important factors. Respondent 136: I either use the term the patient herself used or I use a term that the family can understand. Respondent 141: Most of the staff I work with is comfortable with the term mental retardation when it is medically applicable. Respondent 143: Patient's education level, patient's view and/or reaction towards certain phrases. Respondent 144: In a child under the age of 10, I would use developmentally delayed with a risk for learning difficulties as he/she gets older. Anyone over the age of 10 I would use cognitive impairment."Cognitive impairment" is not a ICD-9 code, so I tend to use learning disability/difficulty when choosing a medical diagnosis in the Epic system. Respondent 145: I think mentally handicapped when describing a patient is kind, and accurate. But have worked to change to 'intellectual disability' in most scenarios. Respondent 148: If a child/individual has a known IQ of… Respondent 149: I think dev delay is easier understood in pediatric setting.
84 Respondent 151: with a new diagnosis in a new baby, I tend to focus on the developmental disabilities (slow to walk, talk, etc), and am more likely to say developmental disabilities than intelectual disabilities. Respondent 152: Education level, familiarity of term. Respondent 154: Many of my patients in prenatal setting are more familiar setting are more familiar with the term mental retardation. Respondent 162: Professional prefer it. Respondent 164: Patients are often unfamiliar with the term "intellectual disability". Respondent 168: Often patients don't understand what "delayed" means (thinking they will catch up). I often use "mental retardation" because people do understand what that means. I usually say "intellectual disability or mental retardation" so they hear both terms. Respondent 169: In a patient at risk for ID, I feel DD is more appropriate until it is clear IQ is. Respondent 171: I try to take my cues from the families when talking to patients. With colleagues, mental retardation seems much more unambiguous and that's how we described my cousin whom we loved. Respondent 172: In this area, that is the term most families would use. I tend to match the families descriptions Respondent 174: For families I tend to lump it in as developmental delay and define that the delay encompasses intellectual and physical aspects. With colleagues I am more specific in terms of delay oor disability. Respondent 175: Fall back on old ways when talking to colleagues because don't have to be politically correct or worry about it as much, plus they know what you mean. Respondent 176: Age of child. Respondent 177: The only way the term I use typically changes is if the family come in using a different term. I will utilize their terms to help them see that we are speaking about the same thing, although using different names. Respondent 179: I often mirror back whatever term the family chooses to use. Respondent 181: The only time I use a more medical terms, such as metal retardation is when a parent uses the term since I know that do not like using the term. I respect whatever term the parents are using. Respondent 182: I feel like providers do not use intellectual disability to describe infants because IQ can not be measured. I feel that a lot of providers use developmentally delayed to refer to an infant not meeting their milestones.
85 Respondent 183: Currently I am seeing patients in a prenatal setting and many don't speak much English/do not have sophisticated vocabulary and I want to make certain that they understand the concepts. Patient understanding may trump political correctness. Respondent 184: Developmental delay - only use this with young children, when the extent of the impairment is unknown, and their development is truly delayed. Respondent 186: I would mirror the terminology used by a family. Respondent 187: I use the terms the family has already used to hopefully avoid any confusion or offense. I use more general terms when the level of disability is unknown and could fall into a wide range. I use ID in documentation as it is what is considered the current standard. Respondent 188: Many patients and old-school healthcare providers do not understand that ID is the same thing as MR and may thik it refers to a milder disability. Respondent 189: I tend to mirror the term that parents are most comfortable with. I will discuss with them that these terms mean much the same thing but have different social stigma attached to each and that I am happy to use whichever term they are using. Respondent 190: I work in a pediatrics clinic. When I see children with developmental delays I typically will say "developmental differences" or "intellectual disability" depending on the severity of cognitive defect. This parent knows there child has developmental delays and I feel comfortable acknowledging. When talking to a family about potential cognitive delays in a child, I tend to be more sensitive in my terminology. When speaking with colleagues I always use ID as that is the clinically appropriate term. Respondent 191: In the prenatal setting, when discussing conditions associated with cognitive disabilities, I typically use the term "mental retardation" as many of my patients would not know what the term "intellectual disability" mean, or they are not familiar with those terms, If I was working with a family that has a child with cognitive disabilities I would follow their lead to determine what term they are using or most comfortable with. Respondent 192: Mental retardation is a medical term with a defined IQ. As appropriate, I use that term. I tend to use "developmental delay" if that's what a parent of an affected child uses, though am comfortable with that language if the child truly has mental retardation and not just developmental delay. Respondent 194: May use developmental disability in prenatal/early childhood period if degree of ID is uncertain. Respondent 197: Parents of young children often think in terms of developmental milestones, whereas intellectual disability seems more appropriate for long term discussion. Respondent 198: To me it depends on the degree of the child's problems, their age, and the parents' terminology. With prenatal I try not to talk about learning problems because
86 it is too vague considering they do not already have a child there, and they have more than likely heard 'mental retardation' from other health care providers by the time they come to me, or they will afterwards. Respondent 199: Individuals who do not have a family member with cognitive impairment (most often in the prenatal setting) don't always understand what the various terms are describing. They are more familiar with the term mental retardation. I also use the term mental retardation when describing intellectual disability using a translator. Respondent 200: If a child meets criteria for a medical diagnosis of mental retardation I tend to use that phrase in all settings. If a child does not, I will often use intellectual disability or developmental delay depending on the situation. However, most commonly, I say something like "intellectual disability, or mental retardation" in the same sentence to a family. Respondent 201: Usually, I try to use multiple terms when talking with parents - primarily developmetal delay but also mental retardation or intellectual disabilty at least once. Respondent 202: I typically use multiple terms, and I work with people who are more familiar with developmental disability instead of intellectual disability Respondent 203: Dev delay is less precise. Respondent 204: mental retardation is losing social acceptability but is still a valid medical term, so I'm more likely to use it with other medical professionals. For parents, I try to use words that indicate the disability is permanent and not just a 'delay' (if it's really MR we're talking about). Respondent 205: For documenting on pedigrees, I learned to use "MR" to describe intellectual disability, but when talking to patients I typically do not use the term "mental retardation". Respondent 206: I am more thoughtful toward a families feelings than my colleagues. Respondent 208: I tend to say intellectual disability to medical professionals because they have a better understanding of what that term means. With families, I think it's easier for them to understand talking more about their kids needing extra help in school. It is less intimidating. Respondent 211: I usually use BOTH mental retardation and intellectual disability together, to exemplify this "new" terminology as appropriate. Respondent 212: I think it depends upon the ages of the patients that you are describing. I say developmentally delayed if I am talking about a young child; however, I say intellectual disability when I am talking about an older child or adult. Colleagues use the term mental retardation much more than intellectual disability, therefore, it is easier to use this term in this context.
87 Respondent 213: it depends on the degree of impairment/the diagnosis and whether or not the counselling session is one geared towards preparing parents for worst possible or one geared towards trying to balance "bad news" while providing a diagnosis and discussing prognosis. Respondent 215: If the child is very young i.e. infant/toddler I often use developmental delay as opposed to intellectual disability, because in most of those cases he child's intellectual abilities have no been fully assessed due to young age. Respondent 216: Try to tailor my use of speach to the patient/patient's family. Respondent 217: I try to use the parent's language as much as possible. Respondent 219: I tend to use the term that I feel is best understood by my audience. Respondent 221: If the child has been diagnosed with MR, then I would use the term MR. The majority of my exposure outside a personal setting is for prenatal counseling. I used the term MR when discussing Down syndrome. Part of why I think this was important is because I think development disability and especially dev. delay can be interpreted as being more mild or more transient in the case of delay. Additionally, I worked with people of poor education and health literacy, most of whom were non-English-speaking. MR is a term they understood and could be translated better. I would use delay when discussing a young child with early intervention for whom it is unclear whether delay was simply that: delay and might resolve. Personally, I also think of dev. disability as possibly being more mild than MR in terms of IQ or in globalness of the deficiency. Respondent 222: I try to mirror what terms the family uses, so I don't have a consistent phrase and chose the term and/or the families use most often. Respondent 225: I find the famillies who have a child with intellectual disabilities are familiar with the newer terminology. However, families I see who have a fetus at risk for intellectual disability, if they don't have another family member with an ID, are more familiar with the older terminology of mental retardation. Unfortunately too, some of the written information and documentation we complete still uses MR instead of ID. Respondent 226: Depends on the level or intellectual disabilty and if appropriate, I do try to mirror the specific patient/ family's language. Respondent 227: I would use the terms the patient/parents use if different than mine, unless offensive Respondent 228: Ease of understanding depending on audience. Respondent 229: For prenatal I prefer to use a broader spectrum term, for colleagues I want to hone in to the problem. DD is a less specific term. Respondent 231: I tend to reflect patient language, and if they use a certain term I am likely to use what they are comfortable with.
88 Respondent 233: Intellectual disability is the word now used by the DSM-%, so I may use it in medical notes. Although I often present intellectual disabiltiy as a synonym when talking to patients, I use mental reatardation because it is a term patients are most familial with. Respondent 235: In sessions, I mirror what theparents use (or correct if inappropriate language is used). In clinical cettings, the medical record reflects the degree of impairment. Respondent 236: Developmental delay is only applicable to children 5 years old or younger. After the age of 5, they are technically children with intellectual disabilities. Respondent 239: Typically based on age of child and whether I feel parents similarly use the term. Respondent 242: The terms may change depending on context of a family - the words they use and/or understand. Respondent 243: I find that I attempt to "soften" my descriptions for families. Respondent 246: Unless it is a derogatory term, I mirror the language of the patient's parents. Respondent 249: In school we were taught "Mental reatardation" but I have learned that "intellectual disability" is more modern and probably better to use with patient. Respondent 252: It seem that the medical community at large (at lest where I work) is not familiar with the term "intellectual disability" so I document it as mental retardation in he chart notes. Respondent 253: There is a major problem with this survey! Cognitive impairment and developmental disability are two different things!!! You can't ask me which terms I use, without clarifying which if the two the patient has. When appropriate, I will usually use the term mental retardation with parents, because that seems to be the only term they recognize. Once established with the parents, I will alternately use the term mental retardation and cognitive impairment. I tend to only use the term developmental delay, when appropriate, because there isn't really an alternate to that. Respondent 254: I start with intellectual disability with families but if they use the term mental retardation, then I use this language. Respondent 255: As a prenatal counselor, I do not frequently see individuals in the medical setting but the onces that come to mind tended to have more delays that just intellectual disability. Respondent 257: To be sure that people understand.
89 Respondent 258: it is often difficult to determine the future cognitive abilities of an infant or child. I would prefer to talk about delays and talk about what might be predicted for future performance - will this person be able to live independently? Drive a car? Respondent 259: I try to be sensitive about using the word "disability" when working wwith patients and family members. It has a negative connotation for many peeople. Respondent 260: More politically correct with families. Respondent 262: When speaking to patients, I use the term(s) they use, which is most often "mental retardation" or "developmental delay/disbaility." When speaking to a colleague or writing a medical letter, I use the appropriate "people first" language and the trm "intellectual disability." Respondent 263: Depends on the point I want to get across, I think the terminology intellectual disbaility is misleading in a prenatal setting. If I am taking about the chnace a baby is going to have trisomy 18 I do not want the parents to think that there child is going to have a mild learning disability. They are going to have severe mental retardation if they survive. The terminology intellectual disability is too close to learning disability for many parents to differentate, especially under stress. Respondent 267: Many patients think of mental retardation as a negative term so with patients, I try to avoid using it unless they use it first. Respondent 269: Even when wanting to use the term intellectal disability to convey what I truly mean, developmental disability is a more common/basic term for a family to understand. I use intellectual disability in the chart/ in conversation with medical professional as the term is understood in the capacity. Respondent 273: If the patient or family uses a different term, I may change my terminology to reflect theirs. Respondent 276: Mental retardation is the correct medical terminology but parents may be uncomfortable with it. Respondent 277: When a child is very youong, a delay in milestones does not necessarily mean the child has an intellectual disability, so I tend to say Developmental Delay. If the child's diagnosis suggests tha he child will demonstrate an intellectual disability. I tend to use the term Mental Retardation and/or Intellectual Disability when speaking with colleagues. Respondent 281: I feel that the PC term 'intellectual disability' is ambiguous to most people and they don't understand that we mean developmental delay pr mental retardation. When families already have the diagnosis/presentation the situation itself is less ambiguous and I think it is appropriate to use that term. I feel that the negative connotation given to words like metal retardation are because we subscribe a negative stereotype to it. In the prenatal setting I don't want to be ambiguous in my terminology and use mental retardation to clarify for most patients. I have never had someone
90 offended by this terminology but when intellectual disability is used, people don't seem to understand what that means. Respondent 282: Try to reflect parents' language in pediatric counseling setting - intellectual disability is my preferred term otherwise. Respondent 283: Depending on the situation, I will use "mental retardation" or "intellectual disability" with parents and only MR with colleagues. I find that MR has a bit of a stigma with parents. Respondent 284: Our patients' are poorly educated and they do not understand "intellectually disabled" or cognitively disabled" but they do understand "mental retardation". Many do not speak English. We use "MR" as shorthand only between staff. Respondent 287: Actually I should have checked "developemntally delayed" when talking to my colleagues because the term is clearer and more concise. Respondent 288: I think it is important to choose the word that has the most relevant meaing for the family, and that can change from patient to patient. Using the term that they choose is a good tactic. Respondent 292: Sometimes in a prenatal setting, I would say both intellectual disability and mental retardation so that I knew my patient understood what I was saying. Respondent 294: Parents choice of words; parents of older children are still using mental retardation to describe their child's mental capacity. Respondent 295: Prenatal patients understand "mental retardation" vs. "intellectually challenged" or "developmentally disabled" better re: degree/severity of disability. Respondent 296: Same termed used as recommended per APA. Respondent 298: I avoid terms that may be considered harsh when talking to a parent w/ an affected child. However terms other than MR may confise general population-say in taking a family history. Respondent 299: I would more likely use mental retardation for medical notion purposes rather than using it to describe a child w/ parents. Respondent 300: It dpends on the child's age; you cannot say that a one year old has intellectual disability; I use developmental delay or developmental disability when the child is clearly delayed but not old enough to document intellectual disability. Some young children have developmental delay that does not translate to having intellectual disability, medically defined IQ <70. Respondent 301: I mirror a family's own language when possible. Respondent 302: "Mental retardation" or "intellectual disability" seem to be the clearer clinical terms, but when talking to patients who have loved family members wth MR, sometimes it feels like the better way to say it is "developmental delay".
91 Respondent 304: I often use the same words the parents use if appropriate. Respondent 305: Intellectual Disability is a relatively new term. In order to assess a family history of ID I almost always need to ake about MR which is a more familiar term for individuals. Sometimes I will use both in the same sentence, e.g. "Is there anyone in the family with an intellectual disability or mental retardation?" Respondent 306: Age of child. Respondent 307: I think the term "developmental delay" is appropriate during early childhood. Respondent 308: prenatally, we cannot predict exact outcomes. "Developmental delay,"I feel sounds less daunting than "intellectual disability". Respondent 314: Especially for prenatal/infants - I want to make sure parents understand what I am saying the issues w/ their child could be. Just saying "developmentally delayed" may not get across that there will be an intellectual delay. If I don't think the parets understand, I will use the term "mental retardation." Respondent 316: I selected the same term in each setting, however, if a parent was using the term "mental retardation: I would use the term they used to continue to connect with them in terms they use and understand.
92 Question #15[Genetic Counselor]: I chose this term as my most preferred term
because…
Respondent 2: It best describes the symptoms with the least amount of stigma. Respondent 3: Seems the most neutral. Respondent 4: It is the least offensive. Doesn't infer that the patient is disabled. Respondent 5: I think this tem is relevant to the most number people (as is MR, but has some negative connotations. Respondent 6: It is the formal, accepted term by the former AAMR (now AAID I believe). Respondent 11: This is the preferred term by groups such as ARC. Also, the DSM and the federal government now use this term. Respondent 13: Most individuals in the general public are familiar with this term more than intellectual disability. Respondent 17: It is descriptive and respectful. Respondent 18: That is the term that most parents choose to use. I feel like they should have a say in how their children are described. Respondent 20: Politically correct and now used by health care professionals. Respondent 21: It is commonly used and inoffensive. Respondent 24: Cognitive disability to me is more a description of how someone may think or have a mind that functions differently. I prefer to talk about the difference in tha way rather than their level of intelligence. Respondent 25: I feel that mental retardation has a stigma. It is also more accurate than sayng developmental delay (which is truly a delay in developmental milestones, not a decrease in IQ. Respondent 26: This is what I use. Respondent 27: It's easier to relate to than "intellectual disability" and does not quite have the negative connotation that "mental retardation" seems to have. Respondent 28: currently the most encompassing and considered the least offensive of the above terms. Respondent 30: It's direct but doesn't have the negative connotations that some other phrases have. Respondent 31: It is the most "neutral".
93 Respondent 35: It is considered the new politically correct terminology. Respondent 37: It is what I was taught in school. Respondent 40: I don't like the terms disorder or handicappd or retardation (althought it is MR, so I use it once), I guess I think delay is more hopeful than disability. Respondent 42: It can be used socially and medically without being misconstrued or hurtful. Respondent 43: It is less stigatizing than Mental Retardation, it is a broad description and most patients understand the term. Respondent 44: Understood by most patients and medical profesionals. Respondent 45: It represents the patient's disability in a neutral manner ie without negative connotation like mental retardation. Respondent 46: It's the one recommended by the government and pateint advocacy groups. I realize the benefit of avoiding the R word. Respondent 47: at the current time it has the least negative connotation associated with it and seems to be the currently accepted "PC" terminology. Respondent 48: I think it is more inclusive than developmental disability or delay, which may be more specific to early childhood developmental milestones. Seems more patient- friendly than mental retardation, mentally challenged/handicapped. I think cognitive disabiilty is fine, but "ID" seems to be becoming the most accepted term. Respondent 50: It's the most PC. Respondent 54: When counselling patients they tend to understand developmental delay vs. Intellectual disability. Also many health care providers i.e. geneticists, genetic counsellors, and referring health care providers also tend to use developmental delay. Respondent 56: It seems to have the most sensitive connotation. Respondent 57: It seems to really cappture what is happening without sounding negative. Respondent 60: I think it most accurately encompasses the phenotype and is understandable to large medical audience without being offensive to patients. Respondent 61: It strikes balance between being informative and has no negative assocations (as of yet) compared to MR. Respondent 63: It tends to work best across different situations. Respondent 65: It is the term that support groups for people with intellectual disabilities prefer.
94 Respondent 67: It seems less inflammatory than mental retardation, and it is specific to intellectual functioning. Terms like developmental delay are too broad and can be used to express other non-intellectual/cognitive changes in development. Respondent 70: Patients understand the term. Respondent 72: Haven't generally seen persons with intellectual disabilities in practice for about 15 years and used this term most often. Respondent 75: Some people have mental retardation, and because tha term is so charged at this point, we need another way to describe that feature. I think that "intellectual disability" comes the closest, and is the most straightforward and least confusing for families of all different backgrounds. Respondent 76: It best represents the disability and does not have some of the negative connotations that other terms have. Respondent 77: I prefer mental retardation because it can be quantified with IQ. I would not use "developmental disability" or "dvelopmentally delayed" because these are the most non-specific terms and may not necessarily be meant to indicate intellect, but could be used for gross motor skills, language, etc. Respondent 79: It is the term that is now appropriate to use by society at large and by patients and those in the disability community. Respondent 81: I work with people with ID and it is the term they prefer along with PEOPLE FIRST language. Respondent 82: I would choose cognitive or intellectual disability because they best describe the type of delay that the person has i.e. developmental delay could be physical or cognitive. Respondent 84: It sounds softer and yet is accurate. It's not just a delay, the child won't catch up or be just a little bit behind the curve. Respondent 85: I'm just the most comfortable with this. Respondent 86: I feel it best reflects the disorder. Respondent 90: Common term that is well understood bymost people. Respondent 91: It is the one most tied to an accurate definition based on IQ. Respondent 93: It is medically accurate. Respondent 95: It is the current politically correct term and seems least judgemental. Respondent 98: It seems the most neutral and is not so politically correct that a patient doesn't know what you mean.
95 Respondent 99: Consistent with current professional recommendations. Dev delay/disability refer to a separate parameter (developmental functioning vs. cognitive functioning). Respondent 101: Can't choose intellectual disability, since it is age-dependent; however, at some point, you really can't call an adult "developmentally delayed". Respondent 102: Most acceptable term to satisfy patient/family preferred terms and medical terminology. Respondent 103: Most parents understand the concept and implications of developmental delay; I am cautious to use the often more stigmatizing "mental retardation." Respondent 107: Of acceptability, seeming ease of understanding, shared understanding of term. Respondent 111: It implies the most neutral connotation. Also, developmental delay is not an appropriate term, because it implies that the child can/will catch up to peers. Respondent 112: It is the currently preferred terminology. Respondent 114: It is the correct term according to those who work in neurobehavioral medicine, and also with Rosa's law. Respondent 115: It carries less stigma/negative associations and seems to be more well- recceived by parents/caregivers. Respondent 119: It is a term that explains to mose American's that there is some cognitive issue. There are also set definitions of what qualifies as MR and modifiers to describe the severity of it. Respondent 120: Delay implies that a person may "catch-up", which is appropriate for some patients who are slower at meeting milestones. If we are talking about someone who will always have an intellectual disability, I prefer the term. Respondent 121: Seems clear and apparent what it would mean without confusion (like developmental delay). Seems less jarring and probably less negative connotations associated with it? Respondent 122: Very specifically speaks to what is happening the word development is not specific, some of the other descriptions are too long and not patient friendly. Challenged is non-specific and disabled refers to the patient not to the condition (challenged and handicapped as well). Respondent 123: It is factual and I believe using it can help remove stigma. Respondent 126: It's less offensive to families who are sensitive to this issue and it's accurate and concise. Respondent 127: In line with physically handicapped.
96 Respondent 130: It describes the condition in the most accurate and least offensive way. Respondent 131: I was taught that this is the correct medical term. Developmental delay or disability implies that development is not complete, so I would never use that for an adult. Respondent 133: It is the least offensive and easiest to understand, and does not imply that the individual will "catch up" like the term delayed. Respondent 134: I think it is the most accurate reflection of the individual's diagnosis, and is a term that is universally understood by healthcare providers. Respondent 136: Families all seem to understand what it means and it is not potentially offensive like MR. Respondent 137: Parents use it and because it's descriptive without being derogatory. Respondent 140: I think parents understand it and it does not cause offense. Respondent 141: It seems to be most favored by parents'support groups. Respondent 143: Doesn't seem to carry as much negative connotation. Respondent 144: It encompasses specific learning difficulties as well as general learning disabilities and impairment in brain functioning without using the more derogatory terms "mental retardation" and "mentally handicapped". Respondent 145: It seems accurate, and the most 'politically correct' at this time. Respondent 148: It is a softer description and does involve the word disability. Respondent 150: It is descriptive of the issue. Changing the terminology will not change the stigma about MR; it will only stigmatize more words. Respondent 151: I feel like it is the most PC term as we're trying to get away from using "mental retardation". Respondent 153: It seems to be the least offensive, but is still descriptive that most people know what it means. Respondent 158: I think it is an accurate description that can be applied to a range of experiences (global delay, specific learning disabilities, etc.) and people are familiar with the term. Respondent 159: It most accurately describes their specific impairment. Respondent 162: Less impact on the family. Respondent 164: Most recognized by patients. Respondent 166: I used to say "developmental delay" but realized that this was misleading and some parents thought it meant their kid could catch up-and this is the case
97 for some situations. I feel like "disability" is preferable to "retarded" or "challenged" but also think this is a moving target since those 2 words are currently used as pejoratives. Respondent 168: It's the least offensive, most descriptive term. Respondent 169: It is the preferred term by both parent groups and professional groups. Respondent 170: It was sort of drilled into us as students that this was the correct term. I will mirror a person's language or use MR if a patient or family is not understanding "intellectual disability" or "developmental delay" but it was very frowned upon in school so it makes me feel uncomfortable to say mental retardation. Respondent 171: I'm not sure. Respondent 174: It is more specific than development delay of any type, mental implies something else in many scenarios (mental illness), intellectual disability best describes the actual condition. Respondent 175: Sounds least labeled. Respondent 176: By definition it encompasses many of the other terms. Developmental delay, I think, is for young children only. Intellectual disability captures young children, adolescents and adults. Respondent 177: I feel it's the most descriptive, most people can understand what you're referring to, and it's least offensive. Respondent 178: Other terms have a negative connotation and may not felect the true disability. Respondent 180: It was the term used in the literature, textbooks, and seems to be the most accepted term by the genetics community. Respondent 181: I think it all depends on the ability of the child. Some children with developmental delays have great intellect or cognition so those words are not always appropriate when describing their abilities or lack there of. I have struggled a lot with these terms and I still do not know the answer, other than parents do not seem to feel "offended" when I use developentally delayed. Respondent 182: It is the most descriptive. Respondent 183: I feel it is ost politically correct, however, I often feel in my population that they would not understand it. Respondent 184: Most accurate term, with fewer negative connotations than other terms. Respondent 186: I am familiar with it. It seems accurate. Generally the current medical term.
98 Respondent 187: It differentiate between physical issues and it has the least negative connotation, at least at this time. Respondent 188: Least offensive Respondent 189: I think that it is the most common term that my patients use and that it also leaves hope that it is a "delay" and not a permanent disability. Children with an IQ of 70 will and can learn most things, they are just "delayed". Respondent 190: It is the clinically appropriate term. Respondent 191: Many of my patients (the artcular population I work with) are not familiar with terms such as intellectual disability or cognitively disabled. So although these are the generally preferred terms, I still use Mental Retardation in the prenatal setting when describing conditiond for which a patient might screen/test prenatally. Respondent 192: It seems to be the most widely accepted and is not misleading like "developmental delay". Respondent 193: I don’t likes the words handicapped, challenged and disabled. I feel like developmentally delayed conveys that the person still has the ability to continue developing, but they are on a slower trajectory. I also feel like it is a little more descriptive, as individuals with cognitive delay may also have deficits in other areas of development. Respondent 194: It feels least stigmatizing. Respondent 197: It is descriptive, and doesn't have the same negative social connotations as mental retardation. Respondent 198: Healthcare is trying to change to that term, so it creates less confusion. Respondent 199: it is most coomprehensive and least pejoritive, and it is my understanding that it is the term preferred by members of the ID community. Respondent 200: It is a medical definition. It is only stigmatized because out society stigmatizes it. The others are really vague and I don't think tell the family anything. Respondent 201: It has fewer negative connotations and seems to be the curret preferred wording. Respondent 202: Most accurate and most sensitive term. Respondent 203: It is accepted and understood by families and practitioners. Respondent 204: It feel like a good balance between socially and medically acceptable, while still conveying it's a permanent thing that affects intellect, not physical ability. Respondent 205: I feel most comfortable using it, and I feel like it's a term that most people understand.
99 Respondent 206: It feels most comfortable to me. Respondent 209: It is the most accurate description of the patient, developmental delay could be motor or cognitive and they may not "catch" up. Respondent 210: I believe that more people understand the term than Intellectual Disability which seems to be politically correct term to use. Respondent 211: Rosa's Law and the movement of the disability community. Respondent 212: I work with Pediatric patients and therefore use this term most often to describe children with intellectual disability. Respondent 213: I feel it is the least offensive. Respondent 215: It has become the preferred termin clinical genetics practice. Respondent 216: In a medical setting, it feels most accurate. I thnk patients with no background with intellectual disability confuse it with learning disability (like dyslexia). That being said, if I were working with a parent with a child with "intellectual disability" I would absolutely use that term. Respondent 217: For now, it is the most accurate, uses the fewest words, and has the least negative stereotype. Respondent 218: It most clearly describes what is actually going on. Respondent 219: It seems easy to understand and politically neutral. Respondent 221: I think that this is a term that generates the most familiarity across various patient stata. While I appreciate that some may be concerned about connotation. I think that if this is the driving force for change (versus accuracy of description), then it is just a matter of time before people catch on to the semantical change. For example, non-compliant has fallen out of favor. But if a diabetic does watch his sugar or comply with medication, is calling him non-adherent really any different? To me, that's just semantics. Respondent 222: It is the most accurate without the stigma. Respondent 225: I think that intellectual disability is the most eeasily understood term without negative connotation. It can also be used with people first language, ex. A person with an ID. MR is associate with negative slang of "retard", developmental delay for families implies more of a temporary delay which for some children is something they are expected to overcome, like a speech delay. etc. Respondent 227: I think it is the most accurate (intellect and development are 2 different things), and also sounds least offensive because it's clinical, and avoids words that have become value-laden even if they aren't inherently. Respondent 228: It is the most appropriate.
100 Respondent 229: it is specific, but also is not time dependent. Respondent 230: It seems the most accurate. Respondent 231: I feel the term carriers the least amount of negative connotation. Respondent 232: The DSM says I should. Respondent 233: People know what it means. "intellectual disability" also sounds very mild, like it could include dyslexia. Respondent 234: This sounds the most professional and least stigmatizing, but still accurate and not misleading. Respondent 235: Most inclusive. Respondent 236: It is the most appropriate. Respondent 238: I don't like any term that uses the word 'retarded' because of the negative connotations now associated with that word. I also feel that a developmental disability, while it pertains to many, doesn't completely encompass the challenges for all children. I feel like intellectual disability is a good medical descriptive and can be used comfortably by family and in less formal situations, so we only need one term regardless of the setting. Respondent 239: Describes the condition. Respondent 240: It seems to be more accepted by organizations. Respondent 242: My patient population understands what this means. It may not be the first term I use, but often fall back to it. Other terms may be better accepted among different groups, however, this term tends to deliver the needed message. Respondent 244: It is specific to how the child will develop mentally vs physically. Respondent 245: I feel it is better than mental retardation and developmentally delayed for someone with an intellectual disability. Respondent 246: It has not been corrupted by society into a derogatory phrase. Respondent 247: It accurately describes the cognitive challenges experiences by these individuals. I also think it is a softer word that "Mentally Challenged". Respondent 249: It is current, most acceptable today. Respondent 253: That's what I've been taught, and it seems to be the most accurate and least offensive. Unfortunately, nobody (parents) knows what it means. Respondent 254: It clearly describes what the condition is, however, because of the stigma attached to MR. I choose to use intellectual disability.
101 Respondent 255: Recent feedback from the community of families with children who have intellectual disability seem to prefer this. Respondent 257: Clear without being derogatory. Respondent 258: I think families have a gut reaction to the word "handicapped" and "challenged." Words like disabilty tend to be viewed as more neutral. However, I do think that there is risk of being so neutral that our meanings stop being clear to families. Respondent 260: It is broader in scope. Respondent 261: Most people know it. Respondent 262: It covers the broad spectrum in people and (at least at this time) does not have the negative connotation(s) associated with "mental retardation." Respondent 263: It is clear cut and people understand what it means. Respondent 267: It seems to be the commonly used "politically correct" term nowadays. Respondent 270: Its meaning is clear to the widest audience. Respondent 273: I do not feel it has a negative connotation. Respondent 274: It most appropriately describes the issue that person has or will have, without the negative connotation that some of the terms invoke. Respondent 275: It best describes the potential that most inividuals have to grow cognitively. Also, I use cognitive impairment quite often. Respondent 276: It's the most straight forward. Respondent 277: That is the term used by our local ARC center so it seems to be the most accepted by families. Respondent 278: It is currently the most politically correct and medically accurate term to use. Respondent 279: It is accurate and specific, yet still a "soft" enough term to use with patients. Respondent 281: It is the most unambiguous. Respondent 282: I belive it's most easily understandable. People are already familiar with physical disabilities, so the term intellectual disabiliy makes sense. Respondent 283: Less stigma, doesn't imply a "catch-up" potential like "delay" does (which might not be true). Respondent 284: I feel it is the most accurate and does not carry negative connotations.
102 Respondent 287: It sounds less scary and refers to learning and not "intelligence" or "mental capaity". Respondent 288: There is a distinct difference between someone with developmental delays and mental retardation, I think cognitive impairemnt is a more respectful term to capture the level of cognitive function. Respondent 290: It has the least negative connotation. Respondent 292: Most common in the literature. Respondent 293: It encompasses the information I need to describe and uses non- offensive language Respondent 294: it feels more patient friendly. Respondent 295: Does not make the individual disabled or handicapped. Respondent 296: As recommended per American Psychiatric Associateion. Respondent 297: It encompasses physically disability that may havee a cognitive etiology. Respondent 298: My understanding is that it is the preferred or proper term (now). However, in taking a history I will ask with both that term and MR to ensure the family is understanding what I am looking for in family history. Respondent 299: The term is broad and inclusive enough without sounding offensive. Respondent 302: While Intellectual disability is a "nicer" way to put it, I'm not sure it really gets the point across, unfortunately. Most people sure it really gets the point across, unfortunately. Most people seem more familiar with "mental retardation." Respondent 303: It refers to the cognitive function of the person. However, this term is not well known to certain ethnic/non English speaking groups. Respondent 305: It encompasses most of the other terms and it is less stigmatizing. Respondent 306: It is the most preferred and politically correct term. Respondent 307: It is an accurate description and it does not have the negative connotations associated with it like some of the other terms. Respondent 308: At this point in time, it seems to be the most "PC". Respondent 309: It is what I know to be the most medically sound term. Respondent 310: It is currently the preferred vernacular to describe this condition. Respondent 312: It is clear but not offensive.
103 Respondent 313: It is a medical diagnosis and people are familiar with the term. No one (meaning my patients) knows what intellectual disability means and, in fact, I think it can be misleading. To me it sounds relatively mild, as if the person can walk and talk but has some slight delays. I think mental retardation encompasses a broader range - someone with Trisomy 18 does not have an intellectual disability because they are not slightly delayed. Respondent 314: Its not one I've typically used, but seeing it here, I like it. It gets the point across in a sensitive way. Respondent 315: It is currently the most appropriate term. Respondent 316: It does not sound derogatory but still classifies the intellectual disabilities as a disorder while not sounding too generic.
104 Question # 17 [Genetic Counselors]: I chose this one term as one that I specifically
dislike because...
Respondent 3: Handicapped can have a negative connotation. Respondent 4: It ha such a derogatory connotation and a bad hisory associated with the word. Respondent 5: I think it is confusing and most families would not know what I am talking about. Respondent 6: I think people may interpret this as having a psychiatric disorder, not strictly an intellectual disability. Respondent 7: Too complicated for uneducated or developmentally delayed to understand. Respondent 11: Not person-first language, and to me the word "handicapped" referrs to a physical disabilty. Also, I hate the word "handi-capable" because it's corny, so handicapped is tainted by association. Respondent 13: It does not accurately describe many individuals in my opinion. Respondent 18: Slang use of the word "retarded" is offensive to families. Respondent 20: Handicapped is a very old tem - no longer in use. Respondent 21: Handicapped is a word with negative connotations and sounds old- fashioned to me. Respondent 24: There's a lot of negative connotation that goes along with this term. It is still however a term that most parents are familiar with and sometimes when I try to use one of the other terms above they don't understand, and if try to clarify with the term mental retardation usually they will then get what I'm asking. So while I dislike it, it is sometimes useful for it's familiarity. Respondent 30: I've heard this term mostly used when people are making fun of others. Respondent 31: Handicapped is the least specific and has the most negative connotations. Respondent 32: It is a sarcastic term like "I'm technically challenged". Respondent 37: The slang term of "retarded" or "retard". Respondent 40: I don't like "disorder". Respondent 42: It sounds like a diagnosis and it isn't.
105 Respondent 43: Retardation, to me, provides an image of moving backwards or remaining stationary which suggests that individuals with intellectual disability are incapeable of learning or moving forward in their lives and this is not true. Respondent 44: It's can be offensive. Respondent 45: Tt has a negative connotation. Respondent 46: The social stigma has made the word unusable as a medical definition. Respondent 47: If used appropriately in the medical setting all are acceptable, however I feel mentally handicapped is the least descriptive term. Respondent 48: Seems to have more negative associations for patients/families than other terms. Respondent 53: To me it sounds like it could be a mental illness, which I think should be distinct in minds of parents and other lay people. Respondent 54: Sometimes used as a derogatory term in the general population. Respondent 56: Carries more negative connotation. Respondent 57: In my opinion it has a negative connotation. Respondent 60: It doesn't sound like a medical term to me. Respondent 61: It's the term I hear the most during pedigrees, and the one I feel makes it most difficult to determine what the patient is talking about. Generally I know they mean ID, but some have used it to describe psyciatric illnesses as well. Respondent 63: I think it's just odd. Respondent 65: It is out dates and inaccurate. Respondent 66: It doesn't really convey what is going on with the child/patient. Respondent 67: The term "retardation" (although it classically means "late" or "behind") seems insulting and inflammatory to use. Respondent 69: Its too medical and I don't think parents grasp the full meaning of it. Also, I' not as familiar with this term as the others. Respondent 70: Too many words. Respondent 71: It's too long and confusing when speaking to a patient. Respondent 72: Don't like the term "handicapped". Respondent 75: I have not frequently heard this term, but to me, it seems clunky and confusing. I think trying to explain what this means to a non-english speaking family.
106 Respondent 76: It is a tie between mentally handicapped and mentally challenged. Both do not really describe the disability and could represent many issues. Also, they could be confusing or negative to families. Respondent 79: Developmental delay is a catch-all term that implies tha there is a delay… and people think this means an individual will "catch up". Respondent 81: It implies defect. Respondent 82: It is outdated and have a negative connotation. Respondent 83: It's use in popular language indicates more than just one's cognitive abilities. Respondent 84: It has a negative connotation. Respondent 85: Developmental delay can be just physical as well. It isn't specific enough. Respondent 86: The term "handicapped" makes some families feel more uncomfortable. Respondent 90: To me, this is not a medical term. This term is rarely used, from my experience, to refer to an intellectual disabilty. I also feel tha it has a negative connotation. Respondent 92: I do not like the word handicapped. Respondent 93: It is clumsy and not medically precise. Respondent 95: I don't like it. Respondent 98: More syllables does not make it a better term, just makes it harder for a parent to know what you're talking about. Respondent 99: Outdated. Respondent 102: Do not believe this is a term a family would be comfortable with. Respondent 104: Too long and combersome and not easy to understand. Respondent 105: Too complicated to patients to understand meaning. Respondent 107: Connotation. Respondent 110: It sounds too medical and it's way too long. Respondent 111: It implies that the child will catch up to peers and it entirely different than true intellectual disability. Respondent 112: The term handicapped is not currently in favor. Respondent 114: Outdated and inappropriate.
107 Respondent 115: it has a negative connotation. Respondent 119: I think that this word is very unclear in its meaning. Our job as genetic counselors is to accurately describe geentic conditions to families. A large number of the general population have no idea what Intellectual Disability means. I am also frustrated by this term because in 10 or 15 years, there will probably be another push to change the term to something else. Respondent 120: I have an inherent dislike for the word "handicapped" and what it implies. I also don't like mentally challenged much. Mental retardation is the medical sense is not offensive to me, but in the social sense, it has a different connotation, which I do not appreciate. Respondent 121: I think it is the word "handicapped" that I associate with negative connotations. That might just be me, though. Respondent 123: It implies that someone will "catch up" eventually. Respondent 127: Many people find this term meaningless upon first hearing. Respondent 129: "Mentally" is not specific enough and can be misconstrued as referring to mental illness. Respondent 130: It's offensive. Respondent 131: It's nonspecific and nonmedical. Respondent 133: It's too long, and confusing for patients. Respondent 136: I will follow lead of familiy and use what they are comfortable using. Respondent 137: Its dated and has been used by some to be insulting. Respondent 140: It has old and ugle connotations. Respondent 141: It may be confusing to some. Respondent 143: Sounds awkward. Respondent 144: It has the most negative connotation. However, if a parent/patient specifically refers to this tem, I will use it once in response but add my preferred terminology of "cognitive impairment". Respondent 145: Mentally retarded' is now considered to e insulting/cruel, although it is still used by many of the MD's with whom I work, and is considered acceptable in a professional capacity. Respondent 148: It has a negative connotation.
108 Respondent 150: We are ALL challenged! Ideally mentally and otherwise. If you want to identify a problem to determine what services are needed, use a term that specifies the problem. Respondent 151: I feel like it is associated with a negative connotation due to people using it as slang i.e. "hat's so retarded" or "you're retarded". Respondent 153: Do not like the connotation. Respondent 155: Individualss who are delayed still typically have developmental potential. Respondent 158: I really don't like mentally handicapped and cognitively disabled because they both imply a lack of ability and are quite negative - individuals with ID are differently abled and can have many strengths. I also don't really like mentally challenged because this doesn't actually make much sense - anyone can be challenged mentally - all students are - learning is mental challenge. Respondent 159: Of the negative connotation associated with it. Respondent 163: Too long. Respondent 168: I don't like "delayed" because it implies that things will change, get better, when most often that is not the case. Respondent 169: It implies lack of capability. Respondent 170: Grad school taught me to be uncomfortable with this term so now I feel very negative about it. I think it can be used appropriately but because the word "retarded" is abused, it becomes uncomfortable to use MR. Respondent 171: This term seems the most limiting. Respondent 172: Doesn't mean anything to most people. Respondent 174: Every individual challenged in some aspect of some subject but not everyone has an intellectual disability. Respondent 175: Sounds made-up and could depict mental illness instead of intellectual disability. Respondent 177: It think that "handicapped" is an offensiive/negative-sounding term for many people. Respondent 179: It has such a negative connotation and is not recommended by any professional of parent group. Respondent 180: It was historically used as a classification, but is now used as an insult. Many families and patients dislike this term.
109 Respondent 181: Anything with the word handicapped seems to upset families. Although I know that Mental Retardation is also seen as offensive. I do not use either of these terms. Respondent 184: Very negative connotations, inaccurate description. Respondent 187: Even though some families prefer this, I feel it isn't specific and can have a very wide range of meaning. Respondent 188: it implies the affected child is just delayed in achieving milestones but will eventually "catch up" to typically developing peers. Respondent 189: Really, I hate the last 4. Respondent 191: I also very much dislike "mentally challenged" but intellectual developmental disability is a term my patiet's just would not use. Respondent 192: It is antiquated. Respondent 193: I feel like handicapped is a negative term. The word "mentally" is too narrow and doesn't convey that there might be other areas of development or functioning that could be affected. Respondent 194: Hard to choose between mentally challenged, mentally handicapped and mental retardation - but I feel mentally challenged makes it sound more like it is a decision that there is control over. Respondent 197: Historically this has been a derogative term. Respondent 199: I use the term developmental delay to describemotor delays, speech delays, etc. Cognitive delays are their own category, and it is confusing to parents when you describe their walking, talking child as "developmentally delayed." Respondent 200: The word handicapped in general is one I don't like. I also don't like Developmenally delayed as that should only apply to a subset of the population… that word should not be used for teenagers or adults who "won't catch up". Respondent 201: The term and meaning don't exactly agree. Respondent 202: The connotation of the term is so negative when it doesn't have to be. Respondent 203: Dev disability is a challenge for the family and society more than the individual who can do well, but within their personal abilities. Respondent 204: It may give false hope in that it's only a 'delay' and the patient will 'catch-up' later, when that's usually not the case. I feel it conveys the wrong information if the disability is permanent, and sometimes feels a bit too 'sugar-coated' if someone really needs to hear the truth. Respondent 209: Very nonspecific.
110 Respondent 210: Too specific a term. Respondent 211: It is awkward and I've never heard it used in practice. Respondent 212: I feel that it is a derogatory term that is demeaning to individuals with intellectual disabilities. Respondent 213: Not sure why, I just dislike the way it comes across when you say it. Respondent 215: "Handicapped" has become a negative term to use for individuals with any type of intellectual or physical differences and I belive it is offensive and outdated. Respondent 216: Delay implies someone can catch up and that is typically not the case in the situation. Respondent 217: It seems too harsh. Respondent 219: Confusing. Respondent 221: There is no term I consistently dislike, but I think the range in terms is confusing. Respondent 225: Associates with negative slang of "retard". Respondent 226: Just seems outdated and a particular negative connotation with "handicapped". Respondent 227: Both "mental" and "handicap" are words that have come to sound more judging than "intellectual" and "disability," because use them in a derogatory way. "mental retardation" is the same, but has the advantage of still being the term most familiar to many patients/families. Respondent 228: It has the most negative connotation. Respondent 229: I believe that it doesn't encompass the range of ID. Respondent 230: It seems the most offensive of the ones on the list. Respondent 232: Some people may be offended by it. Respondent 233: Mentally challenged sound deameaning. My concern with many terms like intellectual disability, developmental disability, and intellectual development disorder is that these terms are too geared for people with a high level of education. Respondent 234: Too complex of a term. Respondent 236: It is rude and offensive. Respondent 238: I had no problem with this term until the world started to use 'retarded' to mean stupid or dumb, and now I feel that it is just not appropriate. While mental retardation was coined before the 'retarded' slang started, I feel like it is no longe
111 appropriate given the widespread use of the slang term. It has a derogatory connotation to it and should no longer be used. Respondent 239: Has been used in the past as a derogatory term by some individuals and I don't want to perpetuate that usage. Respondent 240: It has a negative connotation and does not tell me what I need to know about the deficit. Respondent 241: Of the negative connotation associated with this term. Respondent 242: This term can be confusing to families, delayed implies a child may catch up and in many cases they will not. Respondent 244: Challenges don't always have to be nagative/Also "mental" seems to suggest there was a choice in the matter vs genetic. Respondent 247: This term has evolved to be hurtful for individuals and families with intellectual disability. Respondent 253: Challened is such a negative word. Respondent 254: This is an antiquated term. I also hate developmental delay for children over a certain age because at hat point they are not dlayed they have intellectual disability. Respondent 255: Challenged seems harsh and could encompass mental illness as well. Respondent 257: Seems derogatory. Respondent 260: Too difficult for some of my patients to understand. Respondent 261: Most patients will be confused with this term. Respondent 262: I hate the term handicapped as it seems to imply, at least to me, that their abilities are severely impaired. Respondent 263: It is derogative. Respondent 266: It is both confusing and culturally inappropriate. Respondent 267: Sounds very negative. Respondent 270: Meaning is unclear to the average person. Respondent 273: "Challenged" is a very negative term. Respondent 274: Handicapped is really no different than disabled, but it feels more stereotypical. Respondent 275: Stigma. Respondent 276: Too cumbersome.
112 Respondent 278: The stereotypes is perpetuates. Respondent 279: It seem patronizing and has little medical value. Respondent 281: It isn't very clear what that means, especially yo patients. Respondent 282: I don't like the term handicapped. Mental retardation is not a favorite either because of the negative connotation of the word "retard". Respondent 283: Not too PC, not descriptive. Respondent 284: This term could refer to a psychiatric disorder and is not clearly meant to mean an intellectual disability. Respondent 287: I don't know a single parent who uses it. Respondent 288: I do not like the word handicapped. Respondent 289: The average person uses terms such as "slow"; intellectual development disorder is an especially difficult term to understand. It would have to be explained with other, more traditional wording. Respondent 290: It is used frequently in a pejorative way. Respondent 292: I don't like the term handicapped. Respondent 295: It labels the individual as handicapped. Respondent 296: Negative connotation. Respondent 297: not very patient friendly. Respondent 298: This is a vague term that seems likely to be misunderstood. Respondent 299: Handicapped is a term used more often for a physical disability such as wheelchair. Respondent 302: I dislike "mentally challenged" and "mentally handicapped." I imagine most people are pretty familiar with these terms but they don't seem very 'official' to me, for lack of a better term. Respondent 303: The word handicapped is uncomfortable for some patients. Respondent 305: The stigma associated with the term. Respondent 307: Of its negative connotations. Respondent 308: As a society we have made this a "bad word". Respondent 309: It is a mouth-full, and I do not feel that parents would understand.
113 Respondent 310: Many families and practitioners still use "mental retardation" as a medical term that is equivalent to "intellectual disability" while "retarded" has become slang that people do not associate with medical terminology. Respondent 312: It is outdated and has stigma attached. Respondent 313: It sounds condescending and pejorative. Respondent 314: I don't feel this one is scientific enough. It sounds more like a lay person's term. Respondent 315: Derogatory and non-specific. Respondent 316: This sounds derogatory and put down, and seems to imply a definite limitation on abilities and outcome.
114 Question # 19 [Genetic Counselors]: Do you feel the term intellectual disability requires further explanation when using the term to describe a person's thinking ability or mental disability? Please briefly explain your response
Respondent 2: All of the terms require further explantation to make sure everyone is on the same page. Respondent 3: The actually disability may need to be explained (ex, the difference between learning disability and MR). Respondent 4: This term can mean different things to different people/families, so I try to explain whhat I mean in accordance to the specific family. Respondent 5: I am not sure this means anything to a lot of patients; I'd almost rather use MR with a disclaimer. Respondent 6: It depends on the specific family and their understanding of the terminology. Respondent 7: People know what mental retardation means, they are not used to hearing the term intellectual disabilty and may be more confused by it. Respondent 8: People often don't know what it means. Respondent 9: I think that in the contect of describing any intellectual disabilty you need to clarify what extent the individual is disabled. Respondent 11: Many patients (particularly those for whom English is not their first language) may not realize that "intellectual disability" means the same thing as "mental retardation," or there may not be an equivalent phrase in their language. Respondent 17: Families I work with are more familiar with the term mental retardation. Once the term "intellectual disability" is explained as similar to mental retardation, they are comfortable using that newer term and seem to prefer it. Respondent 18: It is always important to put any labels we use in perspective for the family. ID just means that a person learns at a different pace or in a different way than their peers. It does not mean that they cannot learn or that they do not retain what they learn. Respondent 20: Patients (especially mine from low SES, low level of education) have no idea what ID is, they do recognize the term mental retardation. Respondent 21: I will often say "ID or mental retardation" since many haven't heard the term ID before, but are familiar with MR. Respondent 24: Going back to my previous response, a lot of patients seem confused when I use this term. Intelligence is a somewhat complicated concept. I think that if this
115 term is used more regularly it will eventually become familiar to patients and won't be as confusing. Respondent 25: I work with families of diverse backgrounds. Some people do not know what I mean when I say "intellectual disabiilty". I will define it as "mental retardation". Respondent 26: Not all patients/families are familiar with it. Respondent 30: It's a broad term tha tmay require clarification. Respondent 31: I think that parents/non-medical individuals often do not understand that intellectual disability is synonymous with mental retardation. Respondent 32: Sometimes it does. Respondent 34: Most individuals/medical professionals have no idea about Rosa's law and the new preferred term, so to avoid confusion, we have to explain. Respondent 35: This is a relatively new term that takes the place of mental retardation, so it is not as familiar to the lay person. Respondent 37: I always qualify it the first time I use it with my patients, because unfortunately, mental retardation is still more common. I'll usually say something while taking a pedigree, like "Does anyone in the family have intellectual disabilities? For instance, did anyone need any special help in school?" Respondent 38: Most patients are used to other terminology like retardation Respondent 40: This is such a range in the abilities of the people we see… to qualify what we mean to be important. Respondent 42: Dependent upon the audience - some folks need explanation re: "intellectual". Respondent 43: When a patient describes a family member as having intellectual disability, I will ask them for details of the typr of disability and the degree of diability. Respondent 44: Those less educated patients may have trouble comprehending what intellectual disaility means. Respondent 46: When I say it, patients understand. I've never had anyone ask for or indicate need for clarification. Respondent 48: Might not in some cases, but some patients/families may not be familiar with the term. Also, might need to explain to some families if this is expected to be a permanent disability or not (for example, if child is still very young and has delayed milestones but may not have lifelong disability). Respondent 50: I think not all patients know what that truly means.
116 Respondent 54: When counselling patients, many have not heard this term before and requires explanation. Respondent 56: Patients seem to be pretty away of the definition. Respondent 60: I don't think patients understand the scope of what this refers to. Respondent 63: I think that no matter what term you use, you need to explain how it fits. Respondent 65: Any newer term will need explained until the general population has accepted its meaning. Respondent 66: Sometimes because many patient's and families do not know what intellectual disability actually means. Respondent 67: In some cases, families may not know what this means, especially if they don't use the term, have no family history of the same, and/or if one of the parents/guardians also has an intellectual disability. Respondent 69: I feel like ID is less clear than MR; it is less clear how severely affected the person is. Respondent 70: People don't understand what ID means… I almost always have to follow up with "or also known as MR". Respondent 72: I think it's always good to explain terms being used especially if speaking with a person and/or their familiy members so the use of the term is understood. Respondent 76: Depends on the person but with shifts in descriptive terms comes additional need for clarification and education. Respondent 77: Intellectual disability is very non-specific. What scale do we use to rate exactly how "disabled" a person is? Does this also follow the mild, moderate, severe, profound IQ rating as seen with Mental Retardation? Respondent 79: I think most people now know this term to use. Although sometimes I do have to explain. Respondent 82: Though I guess it depends - if you are counseling a family they may want more specifics about expected severity, etc. Respondent 84: There are varying degrees of ID, so it helps to clarify how severe the ID may be. Respondent 85: I often need to use both intellectual disability and mental retardation to help define it and make everything very clear for people. Once defined, I use intellectual disability in my conversations. Respondent 86: "Mental retardation" is more familiar to most people and easier for them to understand.
117 Respondent 89: People often don't associate ID with MR. Respondent 90: To me, the term intellectual disability could refer to something as simple as a learning problem, or someone who has minor difficulties in school that can be overcome if they try harder. Mental retardation on the other hand, truly refers to someone who has permanent disability that cannot be overcome. Respondent 93: I think it is very clear but an unnecessary switch. Respondent 95: Difficult to answer: I do not know what you mean by "thinking ability" and "mental disability". Respondent 101: Many families I work with have no idea what that means. So I have to say, "… which is another term for mental retardation." Respondent 105: Areas od disability and level of disability should be explained. Respondent 107: Everything with a spectrum requires clarification for severity. Respondent 111: Some patients and their families are so accustomed to hearing mental retardation that they don't understand other terms. Respondent 112: Sometimes, depends on the family. Sometimes I say "intellectual disability, which is what we used to call mental retardation". Respondent 115: It depends on the patient population. Some populations are very familiar with the phrase"mental retardation," but are less familiar with the term "intellectual disability". Respondent 119: No one knows what this means! I hardly know what it means! Who has an intellectual disability and who doesn't?? Does someone with profound mental retardation still have intellectual disability?? I find the term very unclear and lacking in clear definitions. Respondent 120: It requires clarification…peopleneed to understand the prognostic use of the term. Respondent 122: It is not as easly recognized in paients/families as mental retardation. I feel that term is specific to what is usually happening, but just has negative connotation because now people know what it means… General population will feel the same way about the term intellectual disability as soon as it is more common knowledge as to what it is referring to. Respondent 127: Still does not tell anything about functional level while being less known than MR. Respondent 129: I think this is one of the most clear descriptions of the issue. Respondent 130: There are different levels of intellectual disability so parents should know the level of their child.
118 Respondent 132: Often people want further clarification of what is meant by this and I fall fack to say "mental retardation" and then people understand. Respondent 133: It does not specify the degree of disability. Respondent 134: I think this term allows for much broader interpretation of the individual's cognitive abilities. I think it is much less clear cut and is often interpreted as a milder form of mental retardation, when in reality, it may not be. Respondent 137: Developmental delays can be physical as well as intellectual. In a baby, you might not know if "not reaching physical milestone eg walking, crawling is due to an intellectual delay or not. Respondent 140: Not sure that parents will understand that their child will probably learn but at a slower pace. Respondent 141: It is regarded by many as a euphimisim for mental retardation so you have to more specific about the level of disabiltiy you mean. Respondent 142: Usually when someone has a physical disability, there are things that can help them overcome that disability (a wheelchair, reading aids, a corrective surgery, etc). Unless I amm mistaken (which is possible), these corrective interventions do not exist for someone with a "intellectual disability." By using the term "disability", we may be implying that you can actually overcome the impairmet in a similar, physical sense... that if you do certain things, then that person's intellectual disability will be lessened, which is not really true, unless I've completely missed a revolution in neuroscience. I'm not sure that this semantic issue is a problem, though. sure, if it makes people feel better, let's call it an intellectual disability. Respondent 143: Most people still understand it as MR, and might perceive ID as something else. Respondent 144: I think this is a general term, much like "menta retardation" is understood to be a general term with degrees of severity, and therefore gets across the same point. Respondent 145: USUALLY, but there are some times when I am with patients that I use alternate terms (including mental retardation) if they seem to not understand. Respondent 151: Just as mental retardation is a broad term, so is intellectual disability. Respondent 152: Many patients are not yet familiar with this term. Respondent 153: Most people seem to understand the implication. Respondent 158: My answer is actually no, not necessarily. I think it depends on the context. In communicating a diagnosis, I think further explanation and examples will be important regardless of the term you use.
119 Respondent 161: Most people don't seem to know what I am referring to when talking generously about ID in a prenatal setting. Also, the short hand ID mean infectious disease to most medical providers. Respondent 163: I use this term almost always but frequently define it as I use it. Respondent 164: Term often unrecognized by patients. Respondent 166: I think all these terms should include clarification because there is a broad spectrum. I suppose "mental retardation" is the term most clearly understood, but this has a very specific medical definition. Many of my patients don't know what I am saying until I say "what is sometimes also described as mental retardation". Respondent 168: I've already commented, but I think it often needs to be qualified. Respondent 169: Many families aren't familiar with this term yet. Respondent 170: Although not with every patient, the patients with little exposure to individuals with ID typically will require more explanation than those who know someone with an intellectual disability. Respondent 174: Depending on your population intellectual may need to be defines better meaning all processes or learning or anticipated math difficulties there always needs to be an explanation following the use of a "term". Respondent 176: In families with lower education levels, they are not familiar with the term intellectual disability, but they are familiar with the term mental retardation. Respondent 177: Some patients are unfamilial with the term, so it may need further explanation for those individuals. Respondent 178: The difference may need to be clarified for families who may be familiar with other terms. Respondent 180: There is a wide spectrum of intellectual disabilities. Respondent 181: Again, somones intellect has to do with their reasoning of abstract (what is true and what is not). I find that even people with very high Iqs have intellectual issues. To me, intellect is like using the word logic. So, a dissability of logic? It also makes it feel like there is no hope when the word disability is used rather than delay. A delay could give hope in terms of "catching up". A child wih developmental delay may learn and grow. A child with a developmental disability may imply that they do not have such ability to catch up. Again, this is a very difficult subject and really can vary depending on the childs abilities, and the family. Respondent 183: Again, my population is unsophisticated and they feel this is synonomous with learning disability. Respondent 184: Intellectual disability refers only to IQ - does not comment to social, psychological or emotional issues.
120 Respondent 186: I don't think it is yet part of the common lay vocabulary. Respondent 187: In some casespeople may not recognize or understand this term yet. Respondent 188: Parents do not understand if it refers to learning disabilitues or the condition previously known as mental retardation. Respondent 189: Patients are not familiar with this term. Respondent 190: I think there is great variability and it is important to distinguish. Respondent 194: It should be more specificially defined if these are known features associated - whether it is speech/language, developmental, cognitive, etc. Respondent 195: I do not think the term intellectual disability gets the point across to patients; many of my patients do not know what it means. I often use "mental retardation or intellectual disability" to further clarify what intellectual disabilty means. Respondent 196: Many people do not know what this term means and understand mental retardation better. Respondent 197: Depends on the patient and their understanding. Respondent 198: Like all of the terms in this survey, they are subject to people's perceptions of them, and most require further explanation and/or additional terms being used to make sure the meaning is clear. Respondent 199: Synonyms always help understanding, so I often give out 2-3 terms and let the parent choose whichever makes sense to them for the rest of the appointment. Respondent 200: It is vague. Even in filling out this questionnaire I don't know if you are referring to those meeting criteria for MR or individuals with learning disabilities or something in between. Respondent 202: I think it requires some explanation as not all provoders or families use this term; the explanation helps them understand that everyone is talking about the same thing. Respondent 204: Because I breifly explain the level of MR as well (example sklls, abilities, etc). I'd do the same when using this term. Respondent 206: Intellectual is a big word. Respondent 208: I think this phrase can be hard for a parent to understand at first. I always explain it in simler terms. Respondent 209: Mental retardation is a more widely known term. Respondent 210: I think people may not understand what we mean when we use the term intellectual disability.
121 Respondent 211: Depending on the education level of the family and mirroring what terminology they initiate. Respondent 212: I feel that although the term is more politically correct, it does take longer to explain to individuals. Patients and parents do not understand the term 90% of the time. This is because they have grown up using the term mental retardation. I belive that patients and parents think that one can improve when they have an intellectual disability and do not believe that it is the same term as mental retardation. Respondent 213: Most parents will want more information and will want to know if their child will just need extra help in school or will their child be "retarded". Respondent 215: As a prenatal counselor I often begin my descriptions of aneuploidies by saying "intellectual disability or mental retardation" to demonstrate I am going to use the term "intellectual disability" to replace the term "mental retardation", because I feel as if more individuals understand the severity of cognitive impairment associated with the term "mental retardation". I then continue to only ise the phrase "intellectual disability" from that point going forward in the session. Respondent 216: The difinition needs to eb accurate. Important to explain what day to day living may be like, what grade level the person may be expected to complete, if they will need living assisstance, etc. Respondent 217: Many families are more familiar with the phrase mental retardation. Respondent 218: ID can be describe a wide range of concerns, so I think it is necessary to clarify the particular strengths and weaknesses for the child to better understand what their needs are. Respondent 221: I already explained that I think this is confusing, particularly in striving to counsell those with lower health literacy. I also think intellectual connotes a more specific subsetof mental function. Respondent 222: Maybe it's my bias as a GC, but I think terms always need further explanation. Also, it helps to determine what the family member's understanding is and clarify that understanding. Respondent 225: Because there are degrees of ID and to some families it may be important. Respondent 226: Because I don't think that most people understand what that term is supposed to mean or put it in to context or have heard before, which is why I do use that term but also use others to ensure that the patient/family and I are communicating effectively and understanding each other. Respondent 227: Always good to make it clear, as there is such variability and not delving into the specifics only perpetuates the taboo, but I think the term itself is understandable.
122 Respondent 228: Only if speaking with those who do not understand the meaning of "intellectual". Respondent 229: I feel one needs to elaborate the conitive strenghts and weaknesses. Respondent 230: Sometimes - depends on the situation. I think all of these terms might require further explanation depending on the situation. Respondent 233: It definitely requires clarification, which for my patients often requires also using the term "mental retardation." Respondent 234: Does require clarification - i.e. mild, moderate, severe. Respondent 238: Everyone's disaility will be different, so there will always be a benefit in explaining the specifics of he disability, but if I looking for a general term it serves its purpose as is. Respondent 239: In the context of a clinical setting where further clarification can help determine mgmnt,&therapies. Respondent 240: Most families do not know what it means and I often have to use the term mental retardation in addition. Respondent 241: The general population does not typically understand ID the way they understand the term MR. Respondent 242: Many lay peple are not familiar with this terminology. Respondent 245: I don't think everyone thinks intellectual disabiltiy and mental retardation mean the same thing so I thik we have to let people know we mean the same thing by both these terms. Respondent 246: The degree may need to be specified. Respondent 247: For now, as we move from using "MR" to Intellectual Disability it helps to explain it to be clear with families or individuals who may be hearing this term for the first time. Respondent 249: I think it is just semantics and historical. One day, there will be a new term that is preferrable and then I will tru to use that instead. Respondent 252: People are less familiar with this term and do not seem consider it synonymous with MR. Respondent 253: It's not a phrase most people have heard, so they often don't understand what it means. Respondent 254: The degree or significance of this term needs to be explained. Especially for describing predicted life skills as an adult where most peple understand what MR means.
123 Respondent 255: I think it will grow in popularity but currently is not the most commonly recognized term. It also does not address more specific aspects of an individuals disabilities. Respondent 257: But occasionally, patient's may need further elaboration. Respondent 258: This is a term that some people have no experience with, and may not understand clearly. Respondent 260: Because it is very broad. Respondent 262: Most of my patients have not heard the term and seem confused by it. Respondent 263: As I said before it can be too often confused with the term learning disability (mild). Respondent 265: The word intellectual may not be in everyone's vocabulary. Respondent 266: With some patients it does sometimes need clarification. Respondent 267: Most patients are not currently familiar with the term so they might need it explained. Respondent 269: In some situations. Some families are simply not familiar with the term or the significance it may hold. Respondent 273: Oftentimes, a patient or a paient's family is unfamiliar with the term "intellectual disability". Respondent 274: Sometimes, depending on the education level of the patient. Respondent 275: I often find the need to define the terms intellectual disability, it is often a barrier to parental comprehension. Respondent 276: Standare of care has been mental retardationa nd that is accepeted among medical professionals. Anything else will require additional explanation. Respondent 277: Sometimes medically it is helpful to know the degree of intellectual disability. Respondent 278: Mant patients, particularly those with low health literacy do not know what ID means but they do understand what MR means. Respondent 281: Intellectual disability sounds like a learn disability like dislexia, whereas mental retardation is clear that it is a significant learning delay. Respondent 282: Again, people are already familiar with the terminology using the term physical disability. Respondent 284: Our uneducated patients' parents need an explanation of these terms.
124 Respondent 287: Specific examples such as "challenges in school" or "special ed" are necessary. Respondent 288: I usually clarify for pts the difference between developmental delays and intellectual disability, someone with delays typically catches up and someone with intellectual disability has a different level of maximum potential to reach. Respondent 289: Absolutely - see prior response. Respondent 290: It is a common place. Respondent 292: Sometimes patients may bot have heard of it. Respondent 293: Often I will say to patients, "intellectual disbailty, or what we used to call mental retardation", just so everyone is clear on what we mean. Respondent 294: Not everyone is familiar with this being the same term as mental retardation, so with most of my patients it requires further explanation. Respondent 295: It does not describe the degree of disability. Respondent 296: Scarcely used by the general population. Respondent 298: As new terminology arises it will lead to confusion or misintrpretation. Clarity is important. Respondent 299: Intellectual disability is very vague, because we would all need an agreed upon definition of intellect. Respondent 302: I think it is a nicer way to say it, so I do somewha agree that it should be used. But as I said earlier, people aren't very familiar with it and I don't think the point gets across with this term. So whatever by chance I do use it, I do feel that I have to explain further what I mean, and often end up using "mental retardation" at some point anyway. Respondent 303: This is not a familiar description to most people. Respondent 305: Since it is a new term I think it is ok to say that intellectual disability formerly known as MR. Respondent 307: I think the term intellectual disability is descriptive enough;I think the issue of explanation is a problem because people use too many different terms for intellectual disabilty. Respondent 308: If the patient seems to be staring at me without understanding, I more to use other terms that they may be famliar with. Respondent 309: I feel that that term is more broad than MR.
125 Respondent 310: Many people are not aware that intellectual disability is the same as what used to be referred to as mental retardation; therefore, I typically will say "intellectual disability or what is also referred to as mental retardation." Respondent 311: Yes. Patients may not understand the term intellectual disability and there are many different levels of intellectual disability. Respondent 312: There can stll be degrees. Respondent 313: People don't really know what intellectual disability means, and if they have a guess, they assume it's mild cognitive delay. People do not associate it with more severly affected individuals. Respondent 314: For most people. Respondent 315: Dependent on the context and person. Respondent 316: This term sounds more like a way of explaining someone's abilities rather than the official classification of their mental abilities. I think most parents do not immediately realize this is a real official term describing specific features.
126 Question #21[Genetic Counselor]: Could you briefly explain the policy below.
Respondent 3: Patient first language, use of politically correct terms. Respondent 11: All genetic counselors at our institution use the term "intellectual disability" in counseling, documentation, and in counseling aids/patient information. Respondent 18: Staff are taught to use people first language. Respondent 20: Tests we offer when someone has a family history of intellectual disability. Respondent 24: We are required in any medical documentation to use the term intellectual disability instead of Mental retardation. Respondent 27: The term "mental retardation" was completely replaced in all of our documentation with "intellectual disability". Respondent 42: We use "intellectually disabled" in our consultation letters, as more mainstream. Respondent 45: No longer use Mental Retardation, instead use intellectual disability. Respondent 76: Governor Patrick has asked that mental retardation be struct from all state documents regarding services for individuals with intellectual disabiilties. MR is still used by many families and I use the language the family is most comfortable using. Respondent 81: People first language is recommended and training provided to encourage its use. Respondent 98: My institution prefers intellectual disability. I tend to like this term best and use it the most anyway but sometimes if a family uses "mental retardation" or another I will mirror that language. Just because it more recently has a negative association doesn't mean it is innately a "bad" term. Respondent 104: We are to use intellectual disability as the term instead of mental retardation. Respondent 122: ID is preferred. Respondent 145: I don't know that it is an official policy - but 'Mental Retaration' is no longer an available option in our reportin, "intellectual disability" is the preferred term, and we have been told that. Respondent 164: Preferred terminology in documentation is "intellectual disability". Respondent 169: ID is the appropriate term at our developmental center. Respondent 175: We were encouraged by the commissioner to stop using mental retardation and start using intellectual disability in all of our speech and writing.
127 Respondent 178: Guideline to encourage use of ID instead of other terminology. Respondent 186: A general recommendation to only use "intellectual disability". Respondent 211: I don't know that it is a "formal" institutional policy, but one which is generally understood throughout the genetics division. Respondent 240: In pedigrees and in letters we are to use the term intellectual disability instead of mental retardation. Respondent 274: Guideline around quoting risks and offering testing related to a fam hx of intellectual disability. Respondent 292: We are to use intellectual disability. Respondent 303: State paperwork does not allow the use of the term mental retardation. Respondent 313: All of our pre-written fragments for our notes, as well as our pre-printed pedigree forms use intellectual disability rather than mental retardation. Respondent 316: Intellectual disability is the preferred term to use when referring to individuals with ID/MR and/or the potential for these issues.
128 Please feel free to include any other thoughts or additional comments below.
Respondent 11: Providers need to be mindful of the "euphamisim treadmill" - all terminology that refers to individuals with cognitive impairments will eventually be adopted to some to demean or insult. Eventually, all terms will become derogatory, so the preferred terms will change over time. Respondent 17: Terminology regarding intellectual differences is a moving target. As long as society continues to make outliers and pariahs of individuals with differences, then the terms we use to describe intellectual disabilities will continue to be made into derogatory terms. Though changing terms briefly frees individuals from stigma, the only way to make this permanent is to change attitudes about disability. Respondent 18: It is important for us as medical professional to listen to families about how their needs and concerns. If a certain term or phrasing is offensive to them, we should change our behavior. Respondent 25: I do think this survey might be a bit misleading because you personally use the term "intellectual disability" instead of defining "a person with decreased mental capacity/low IQ, etc". I think it does introduce some bias. It is my preferred term, but certainly not all patients identify this term or understand what it means. Respondent 30: I most use "developmentally delayed" when referring to small children (~10yrs or younger) then switch to intellectual disability for individuals older. Respondent 42: To some degree, words are just words - someone could use "intellectually disabled" in a derogatory was just as mental retardation is used. I think the way words are used - and the explanation and consideration - are equally as important as the actual words. Respondent 50: I think how the term mental retardation is used is important. I have always been taught that saying someone has mental retardation is ok, while calling someone "mentally retarded" is not. Respondent 56: I believe the term mental retardation is still acceptable when used objectively as opposed to saying mentally retarded. When used objectively, "such as this condition has a risk of mental retardation" it is very descriptive, but carries a very negative connotation when used as the sole descriptor of an individual. Respondent 60: I think this survey is strongly biased given that you chose to use the term "intellectual disability" in your questions - this forces us tot think that this is the correct term and should be selecting it for our answers. Respondent 63: I think that although the term "mental retardation" has negative connotations with some patients and families, I feel that it has the best application.
129 Respondent 66: I think if the phrase "mentally retarded individual/persons" where restructed to "persons/an individual with mental retardation" would also be sufficient. I think using people first/person first language is perhaps the best way to speak/write about these situations. I feel that potentially with time the phrase "individuals with an intellectual disability" will be replaced with yet another term to describe individuals with "intellectual disability/mental retardation". Respondent 75: I understand why the term "mental retardation" makes people uncomfortable, and has become quite "charged" in today's society, and generally agree with the reasons behind the arguments for changing terminology. But, in some cases, I feel that it is the best description an individuals's medical issues. And in an effort to provide clear, accurate information to famillies, I think we should sometimes call things what they are. Additionally, I feel that eventually, the any term that is used to describe people with MR/intellectual disability will become "charged" and we'll have to keep coming up with new (and, sometimes, less accurate/concise) descriptors to document their features. Respondent 81: It matters to the people we re describing and their families… therefore it should matter to us. Respondent 98: Maybe in 10 years jerk kids are going to be calling other kids, "intellectually disabled" on the playground and then we are going to have to have this whole conversation again. Respondent 103: Depending on the education level of the patients or their families, I commonly rotate between "learning problems," "intellectual disability," and "developmental delay." I think these still convey the message to parents and also avoid the stigmatizing use of "mentally retarded" and "mentally challenged/handicapped." When describing young children (age 0-5) I may use the term "developmental delay" more frequently, and I may pair it with qualifying statements like "significant" or "mild". I sometimes say that children "may need extra help with learning or with daily activities" to also convey the message. It really depends on the situation, comfort of the parents, and their education level though. I rarely use "mental retardation," but if I do it is when taking a family history. I will say something like: "Is there anyone else with intellectual disabilty, oor what some people call 'mental retardation,' in the family?" Respondent 112: It's a moving target. "mental retardation" was a clinical term and wasn't pejorative until he got adopted by the general population and used in ways that were offensive. One day, they will do the same thing with "intellectual disability" and then we will have to come up with a new term. Respondent 120: Good study! There are so many slighht connotations to terms that it will be interesting to see results. Respondent 123: Laws mandating language are terrible.
130 Respondent 131: I think MR WAS a medical term and not meant to be associated with value or a social issue. In my opinion, if we switch to using anything else (like ID), it too will become "taboo" after cruel peoplle start using it in a slang way as an insult. Respondent 137: This issue is an evolving one. I remember at an NSGC meeting 20+ years ago, there was a debate ab out appropriate terminology which changed over time as cultural demands changed. Le handicapped became challenged and now it's disability. Respondent 143: Words themselves are neutral until tainted with negative social constructs and understanding, we can keep changing the terms for the sake of PC, but it doesn''t address the root of the problem, which lies within the society's perceptio of MR/ID. Respondent 145: I haven't heard "itellectual development disability" before and like it - though it is a little lengthy. Respondent 150: If we want to get rid of the stigma around mental retardation, we need to change our actions, not our words. Respondent 168: I understand that there are people who are offended by the term "mental retardation", but unfortunately that is the term that most people understand. Obviously that will take some time to change. However, I feel that the next term (i.e. intellectual disability) will also become offensive in time, just as every former descriptive has become. Respondent 170: I think because I have been conditioned to have a strong aversion to MR, it really makes me uncomfortable. If there wasn;t such a negative connotation surrounding it and if it didn't get used as a slang word for dumb or stupid, I may feel differently about it. It is hard to say what the present would be if the past rewrote itself. Respondent 175: What ever one calls it, people know what mental retardation is and don't always know what intellectual disability, but they are learning. Changing the terminology doesn't change the problem, but if it makes parents feel better than I am all for it. Respondent 177: Neat project idea!! Respondent 180: I think this change is important, but will also take time as society is very familiar with the term mental retardation. Respondent 181: The reason I agree with Rosa's law of reoving the word mental retardation is because families feel that it has limited the scope of how others perceive their child's ability. However, I am not sure if replacing it with intellectual disability is the right word, but I am happy that families agree to it since it really is their fight. I thnk Rosa's law was a wonderful victory, but I do worry about how intellectual disability over time will be percieved and if one day that word too will be banned from publications?
131 Respondent 187: No matter what term is currently used it will unfortunately eventually aquire a negative image like what has happended with previous terms. We run the risk of glossing over the importance of this issue when a term is used that doesn't clearly indicate the degree of disability in the effort to be sensitive. Respondent 188: Your question about which term I use in different settings did not give the option of multiple answers. I often tailor my language depending on the patient, their health literacy, etc. Respondent 189: I feel that intellectual disability is appropriate for adults, and developmental delay is appropriate for children who have not shown us what their full potential for learning might be. Respondent 197: Watch your spelling! Respondent 199: Let the patients choose what terms they are comfortable with, both when they are there with a family member with ID or when they have never heard of ID. Respondent 200: Outside of my Gcing role I have worked with individuals with mental retardation and/or autism for over 16 years. Society is what stigmatizes words and sadly that isn’t going to change. So changing our field to just use words that are less descriptive and more vague is not the solution. Helping educate society so there is less stigma to me is a much more valuable effort. Respondent 205: There was a question earlier that asked whether it matters to me what term the parent uses in a session and I accidentaly answered that it does not matter, I would like to change that answer to "strongly does matter". Respondent 211: There should be more public education and awareness of such movements. I often use both MR and ID together in the same sentence to familiarize new families, particularly if MR or other terminology is used. Respondent 215: Great survey, important topic! Respondent 219: I have no preference for the last question but it wouldn't let me answer. I don't feel that large amounts of money should be spent changing publications when all the words mean the same thing. When time somes to update documents, sure, the term can be changed. Most people in the public use MR though. Respondent 227: Terminology is most important in speaking with/resources for patients and families; how legal documents word it doesn't seem as important, but could be a good example for everyone (providers, legislators) who DOES reference those. Respondent 230: I think that this is a good law and I think that the push to change to Intellectual Disability is great. However, there also needs to be a simultaneous push to reduce discrimination agains those with ID and to normalize for those unfamiliar with ID what this means. Otherwise, this term too will quickly become perjorative. Respondent 232: I feel strongly about people-first language.
132 Respondent 233: Changing this term in legislative forums is much different than never using the term "mental retardation" with a patient or family again. Respondent 239: I agree with final statement to the extent of updating documents as other needs arise and not solely for the purpose of changing terms. Respondent 241: With time the term ID will begin to develop the same negative association that MR currently has. Both are clinically accurate. Respondent 247: This law reflects the great need to use people first language and is a step in the right direction to using Intellectual Disability as the term of choice. Respondent 249: I think the terms are more or less the same in the medical setting, but the word "retarded" has taken on more mean spirited and derogatory conotations in the general population and culture. Respondent 253: I don't feel strongly that mental retardation is a derogatory phrase… it seems like a lot of work and waste of resources to force a change in phrases. I'd rather see those efforts go toward general public education regarding the topic and programs for families who have children with MR, CI, ID, or whatever you want to call it! Respondent 254: There should be a somewhat agree choice for the items regarding intellectual disability. Respondent 255: Although I think the growing trend is towards intellectual disability, I do mirror my language off of my patients. Patient's who describe a family member to me as having "mental retardation" I will respond with the same terminology but when I am introducing the idea I describe iit as intellectual disability. I also document it as intellectual disability in medical records. Respondent 258: I do try to use the language a familu uses during counseling. I used to answer the phone at a camp for individuals with disabilities - sometimes callers wouldn't have any idea what I was talking about when I used terms like cognitive disability. Respondent 263: Mental retardation is a medical term to describe a medical condition. Respondent 269: Changing the term from mental retardation has received support from our communiy. I do not think mental reatardation is a "bad" or "wrong" term to use when appropriate if it is used in the right context, with empathy and support, and conveyed respectfully. Respondent 270: This survey is somewhat biased by the fact that it uses the term intellectual disability exclusively in the questions as well as the recruitent email. Respondent 274: I am not sure that a law is needed to make sure the wording in all government documents changed, but I support a shift in using terminology. It will just take some time before it is universally adopted.
133 Respondent 275: Are not many of the questions in this survey biased by the fact that you called it "intellectual disability"??? Why wasn't cognitive impairement listed? Respondent 277: Throughout history there has been an evolution in language used to describe persons with intellectual disabilities. I have long thought that it is ore important to change society's acceptance and inclusion of all people than to be concerned about the language that is used. I wonder what the PCterm will be in 20 years. Respondent 282: Unfortunately, I believe any new terminology used will eventually become a derogatory remark as previous terms like "retard", "moron", "idiot" and "imbecile" have become. Respondent 294: I'm actually neutral to Rosa's law, but you wouldn't letme choose that; I think each situation is so unique, each family with their own preferences. Respondent 308: "Mental retardation" only has bad connotations because we, as a society, made it that way. Respondent 309: People should not be offended by the use of the term mental retardation. It describes exactly what it is and was the correct term for many years. I'm happy to add another term into my vocabulary, but the use of the old term should not be "banned" or "corrected" in documents/everyday use. Respondent 310: I felt that the questions that used intellectual disability, developmental delay, and developmental disability interchangably are incorrect as these all have separate meanings. The questions where preferences to rank these terms were not done accurately as they aren't synonymous. Respondent 311: While I use the term intellectual disability and think it is the preferable term to use in the future it seems extremely costly to convert existing federal records to a new term and that may not be worth the cost. Respondent 313: I realize that MR now has a negative connotation associated with it, but I don't see ID as being any better and is certainly more confusing when speaking to patients. And at this time, MR is also still a medical diagnosis - ID is not. Maybe over time things will change and I will become more used to using the term ID, but for now, even with my institution's standards of saying/writing ID, I refuse to do it. Respondent 315: For me, it is most important to use PEOPLE FIRST language. Respondent 316: When referring to ID/MR and/or the risks for ir, I ofte use both intellectual disability and mental retardation, as many people do not realize that I am referring to MR when I say ID (said in full or abbreviated). This is even less common in the Spanish population, here "retrazo mental" is almost always used. I have only heard a parent use "disabilidades intelectuales" one time so fare in my counseling.
134 APPENDIX 8: Parent Open-ended Response
All responses are shown as entered into the survey. All misspellings are transcribed verbatim.
Question #11 [Parent]: If you change the term you use in different settings, please describe why or what factors contribute to your decision.
Respondent 1: It seems like "developmental delay" is an easier pill for people to swallow, and perhaps less stigmatizing, when it comes to talking with new people. Respondent 5: Some people don't know what an intellectual disability is. Also no need to be specific about his disability when talking with strangers. Respondent 6: I'm worried that you may be asking if we define our children by a label. We don't. He is unique, wonderful, high-achieving, and surprising young man who is not his IQ. I wouldn't tell anyone my IQ when introducing myself. Why is it necessary to tell everyone his IQ. What do i hope they will do with that information? I don't because I don't want others to take that label and think they know my son and what he can and can't do. Respondent 7: I almost always use the same term. Respondent 8: So as to best connect with the listener. Respondent 10: Context, medical experience, level of education. Respondent 14: It depends on who I'm speaking to if it’s the medical profession or any other profession it's intellectual challenged, if it's family or friends I use the term intellectual disability. Respondent 16: Not sure that folks outside the field are accustomed to hearing the term intellectual disability; with strangers, I think Developmentally Disabled signifies a broader realm of disability just than just cognitive functioning, which does apply to my son. Respondent 20: Don't want frieds and family to feel sad. Respondent 23: Depends on what is appropriate - not always important to discuss. Respondent 28: Shorthand reference, whether I need to referenve it at al. Respondent 30: It depends on what term comes to mind at the time and what I want to achieve. Respondent 33: You didn't really list the alternative I use, which is cognitive impairment. Respondent 34: My audience.
135 Respondent 38: Allowing others to know a diagnosis of Autism helps offer more information as to possible social limitations that aren't always assumed with using another term. More people can identify that they have heard of or witnessed the various communication and social factors I attributed to an ASD without perceiving a child has a specific intellectual challenge (aka they don't assume he is not intelligent). Respondent 41: I really don't like using the word disability at all, but I would only with medical professionals. Respondent 42: Change term based on the best understanding of the audience, ie, doctor, family, or friend. Respondent 44: How well they know my daughter. Respondent 46: In some situations using the term DISABLED indicates it is not a temporary condition that will be cured. The term DELAYED indicates it will get better if we just work or try harder. Respondent 49: We focus on the person and NOT on the disability. In a doctor setting I would simply say she has Down Syndrome so that they have that information for any medical concerns that would be presenting. In pretty much any other setting I focus on her as a person and give the information the other person needs. And if they are going to be teaching her something I would say that she learns differently and that she learns best through visual presentation and repetition. Respondent 53: Depends on people's level of understanding/compassion. Respondent 54: I don't know why. Respondent 56: People tend to empathize with a parent of a child with special needs. I would rather they treat me like every other parent they know. Respondent 62: With people I don't know, would initially use term 'special needs' and go into more detail if conversation took us there. Respondent 63: I don't feel the need to explain. Respondent 68: Outside of a medical setting I will most often use the word 'delayed'. In a medical setting I stick with the specific diagnosis. Respondent 70: She can think for herself, just needs time to process what your asking. Respondent 71: In order not to talk down to her or that she would be treated like she is mentally retarded. Respondent 74: Most of the time I don't use any of these options… for medical personnel I will give them his diagnosis. Most others I just say he has special needs. Respondent 77: I would like to describe more of an ability than focus on the negative side "disability".
136 Respondent 78: Familiarity. Respondent 83: More commonly used term. Respondent 91: In all honesty, I usually just say he has down syndrome and it takes him longer to understand and learn. Respondent 92: In a medical setting it is sometimes necessary to categorize. I don't always like it, but it's the nature of the beast. I other settings it is our vision that others see our son like he is…just another kid. How would you like it if people tended to see you first for something that isn't a sting suit. We don't view him as disabled or special needs. He does everything the rest of us do... sometimes at a different pace. Respondent 95: The terms are not important, it is how you communicate with her. If you stay away from abstract she can answer your question.
137 Question #18 [Parents]: I chose this term as my most preferred term because...
Respondent 2: More of a broad scope. Respondent 3: It seems less harsh. Respondent 4: I think that most of these terms are too narrow to describe the range of things that could be going on. Cognitive disability seems like the biggest bucket to me. "Mentally" to me suggests mental health issues such as bipolar disorder or depression. Developmentally delayed dussests that a person will catch up which I think is usually inappropriate. Respondent 5: It's specific, accurate, and becoming the term that most peole know and understand. Respondent 6: It best decribes my child. I think that ranking the other terms is like "Please rank the order of terms you would like others to refer to your child" "ugly, stupid, imbecile, limited, retard, fat, brown" They are all terms that are offensive when used to describe an individual. Respondent 7: It is true, my daughter is developmentally disabled. Respondent 8: The condition was described as "intellectual disability". Respondent 9: I think it is the least offensive. Respondent 10: More accurate. Respondent 14: To me that's the one and only disability he has. Respondent 16: It is most precise; it will eventually become to be understood. Respondent 17: I do not think it is offensive. Respondent 18: More clearly depicts how my child is when compared to kids his age. Respondent 20: It seems to imply athinking style ore than absolute ability. Respondent 22: It doesn't address only intelligence, it doesn't use the term 'retardation' or 'handicapped'. Respondent 23: It covers a wide spectrum. Respondent 28: Its generally understood. Respondent 29: With my child's syndrome, each child is different in how delayed they are. There are a few children that are delayed, but catch up with peers later in life. Others don't. I choose the term "developmentally delayed" as to not finalize my child's cognitive abilities as I do not know what the future may hold for him.
138 Respondent 30: It would be understandable for medical personnel and for lay people as well and it is respectful to people with the disability. Respondent 31: Expains it best-acts like a younger child. Respondent 33: I am sure things will change in the future, but for now it sees to work. I also like cognitive impairment. Respondent 34: I think it is the best description that everyone can understand. Respondent 35: I see it as a disorder, not a disability. Respondent 36: It’s a proper nicer way. Respondent 41: It doesn't have as much of a negative association with it. I would also use Cognitively Delayed. Respondent 42: It's broad and covers more than just intellectual. Respondent 44: It doesn't come across as harsh as a disability. Respondent 45: It uses people first language - he has the disability, ut it is not ALL of who he is. Respondent 46: It is accurate, non-threating, and puts emphasis on the development being abnormal, not the person. Respondent 49: It focuses on the person and what they do instead of focusing on what a person CAN'T do… I realize tht most people don't want to have that as an explanation but that's ok. Respondent 51: Seems most respectable to me. Respondent 53: Once a term is used too much it has NEGATIVE meaning. Respondent 54: It sounds to me that the brain is wired differently and has more positive connotation. Respondent 55: It is the most accurate. Disabled seems more permanent to defined… does not allow for a spectrum of development unique to each child. Respondent 56: In my daughters case she is behind developmentally , but is capeable of doing everything other kids are doing just a little behind. Respondent 57: I feel it most accurately describes our son's ability. Respondent 58: The other terms I fill can be offensive. I don't consider my child DISABLED. Respondent 59: The first concern is "developmental", and "disability" prepares others for the challenges.
139 Respondent 60: I don't view my child as disabled or delayed. Respondent 61: It sounds most true to me. Respondent 62: Feel it more accurately reflects what I see in my own child. Respondent 64: Its not such a harsh saying. Respondent 68: It's not too cumbersome & is not so specific to intellect but conveys that there are other concerns as well. Respondent 70: it is least harsh to me. Respondent 71: I believe there is an unspoken definition that the personal can and does learn & grow… Respondent 74: It does not demean the person. It affirms their value, they will and do learn and grow, it just takes longer. Respondent 75: It sounds more acceptable. Respondent 76: It sounds more truthful and less cruel. Respondent 77: Best choice. Respondent 78: It's not perfect but least offensive Respondent 79: It is true and easy to understand. Respondent 80: They are still able individuals. Respondent 81: Most appropriate, least offensive. Respondent 83: Best option to describe although I wish a better term than disability. Respondent 85: Down syndrome is a disability caused in development. Respondent 87: It describes with kindness and hope. Respondent 89: I think it sounds the least negative of a person. Respondent 90: It encompasses most delays without using the word retard which in my opinion is a very mean thing to say about anyone since it is often used as a derogatory term to insult someone regardless of having delays or not. Respondent 91: Seems easy to understand and doesn't limit the ability to learn more. Respondent 92: It is the most neutral term. It doesn't empasize disability… what a person can't do or has to do differently. People with developmental delays can be smart (intellectual). Mental makes me think of emotional disorders. Cognitive is descriptive (good for medical community) but not mainstream. I never likes disabled for any diagnosis. I just don't see people that way anymore.
140 Respondent 93: Fits within "county board of dd". Respondent 94: Always gives hope for achievement of fullest potential with time. Respondent 95: Everyone of usis challenged and we don't have descriptions with our name so why should they!
141 Question #20 [Parent}: I chose this term as one that I specifically dislike because...
Respondent 2: Too many stereotypes. Respondent 3: It is demeaning. Respondent 4: I understand that this term is sometimes used clinically, but it is so toxic outside of the clinical setting. I think it's a potential minefield for families with a new diagnosis. Respondent 5: Don't like the term handicapped, also any term with "ed" at the end implies he person is the disability; I prefer to say someone has a disablity, not IS a disability. Respondent 6: I don't like most of these terms. Respondent 7: It sounds so old, and retard means to stop (in my opinion) and my daughter doesn't stop growing and knowning things Respondent 8: "Dveelopmental" includes more than "intellectual"… it's too broad. Respondent 9: It has a very negative stigma attached to it. Respondent 10: Social negativity and inappropriately used. Respondent 14: It's degrading. Making him less than. Respondent 16: Handicapped comes from diasabled peope begging with "cap in hand." Retardation I always associated with the slow, retarded as in music, wave of the EEG. I didn't see it as being so disparaging although it had become a negative in the larger population because of the slang term, "retard." Respondent 17: Many people still use the term retarded when making fun of someone who made a mistake. Respondent 18: Sounds demeaning. Respondent 20: Seems outdated and condescending. Respondent 22: Of the derogatory nature of current slang use of the term 'retarded'. Respondent 23: Bad connotation from the past. Respondent 28: So much derogatory slang associated with it and it wounds so final. Respondent 29: This term has been misused and abused by society that it now has a negative connotation. Respondent 30: It indicates that there is no potential for additional learning to me. Respondent 31: Outdated, stereotyped, derogatory
142 Respondent 32: It is dismissive and often based on outdated ifnformation that an be damaging. Respondent 33: We are trying to get rid of the R word. At one time it was an improvement, but things change. Respondent 34: The term itself is not clinically bad, but the usage of the term "retarded" has become so misused and has such a bad connotation, I do not use it. Respondent 35: The word Mental seems cold. Respondent 41: Because it has such a negative association with it and it is used in slang terms to bully and hurt others. Respondent 42: Outdated term and slang term used much too often. Respondent 43: Retardation is an extremely sensitive term. Respondent 44: It is degrading to people. Respondent 45: It is outdated and stereotypical and brings to mind such a negative image! Respondent 49: NEGATIVE. Respondent 51: I don't like the "R" word. Respondent 53: Very negative. Respondent 54: It is so outdated and stereotypes the person to no expectations. Respondent 55: Seems to indicate complete lack of ability (I associate disable with the complete loss do physical function). Respondent 56: Because of the way it is used as slang. People automatically think stupid when they hear MR. Which is not the case. Respondent 57: Don't like/use the word retardation if I can help it - too much stigma associated with it. Respondent 58: It is extremely offensive and degrading to a degree!! My child is no different than anyone else and shouldn't be referred to as Retarded in any way!! They are DELAYED. Respondent 59: Retardation is a very limiting word, which should be left for inanimate things, not people. Respondent 60: It is used and viewed as negatively in society as a synonym for stupid. Respondent 61: There is such a negative attitude towards that phrase. Respondent 62: Does not describe well what I see in my child and parts of this term is often used in conversation in a derogatory manner.
143 Respondent 70: Too many slangs associated with it. Respondent 71: Because when people hear this term they are already concluded that they approach/treat the person as they can't learn, or more like a very young child. Respondent 74: It has been used to degrade and devalue people and is derogatory. Respondent 75: It sounds very insulting. Respondent 76: Sounds incredibly negative. Respondent 77: The word retardaton is a negative and has turned in a way of putting a community down. Respondent 78: It's mostly used negatively and in slang. Respondent 79: It seems limiting to say someone is handicapped. Respondent 80: This term is the basis for flagrant derogatory use of the word "retard". Respondent 81: Such a negative stigma attached to any form of the word "retardation". Respondent 83: Outdated and negative. Respondent 85: Retarded has come to be a derogatory term, use as in bullying. Respondent 87: It put everyone in a box, like it is final with no hope. Respondent 89: I don't like the word retarded. I think it is horrible and for someone to use that term to describe my son makes me very angry. Respondent 90: It is used derogatorily as an insult regadless of having delays or not. Respondent 91: It's outdated. Respondent 92: I hate handicapped more than disabled. I rated mental retardation lower earlier because it is so sociallycharged. It is colloquial usage is heartbreaking. Respondent 93: Help me grow worker said "we are taking the m r out of the paperwork but we can't take the m r out of the child, ha, ha". Respondent 94: Negative social connotation. Respondent 95: It has a negative connotation like Negro and shoulde not be used.
144 Please feel free to include any other thoughts or additional comments below.
* Particpant included contact information, information was removed from responses and placed in a separate document.
Respondent 4: I find that a lack of clarity around this issue actually makes it difficult to talk about with all kinds of people. I'll also note that I have heard a genetic counselor refer to herself as a "retard" with regards to technology. Of all of the people who should know better, people working in genetics should never say something like this. This is so much worse than using the phrase "mental retardation" in a clinical context. Respondent 5: I like to say a person has AN intellectual disability; to me it sounds funny the way you are saying it in yr survey - "a person with intellectual disability" instead of a person with AN intellectual disability. Respondent 7: Thank you for asking my opinions! Respondent 8: Would love to get a copy of the final paper. * Respondent 14: I'd like to thank you in advance for reconcidering changing the term mental retardation to intellectual disability. This is a change that I feel needs to happen. I struggle with the term menal retaradtion, I actually hate that term. My son is a person like any other child, he just had a different way of learning, we all have abilities and disabilities. Respondent 20: Don't care too much what term is used. We have two severe sons (autism, classic) so we have much nogger issues than labels. I think money should gp to services, not changong labels. Respondent 22: I think this should be mandated in federal and state publications. Respondent 28: Person first language. Respondent 30: I would appreciate recieveing an email with your final report. * Respondent 31: I understand the current politically correct term is intellectual disability but I prefer developmental disability as more accurate and easier for the public to understand. Respondent 32: It is a term that is overused and misused. It is limiting and oftenm times gives people permission t not see the person. They refer to a chapter in a book rather than a dx. Respondent 33: We only saw a geneticist when he was one month old, and so that was a long time ago and I do not recall if mental retardation even came up. Respondent 43: There are varying degrees of intellectual development. One term does not describe the condition. Retardation or disability may be too extreme in some cases.
145 Respondent 46: I personally am not offended by the term "retardation" it's just a word and an accurate one at that. I think just because some individuals in the wold use it inaccurately and to intentionally inflict pain doesn't mean we should spend government money to immediate replace the word everywhere it is currently used. Changing the wording when documents are being revised for other issues/changes is the way to go. Respondent 53: Not good to change terms, yet they become overused and have negative connotations. Respondent 55: I do not mind mental retardation in a medical discussion but prefer dev. Delay. Respondent 58: I belive theterm should be Developmentally Delayed they are not DISABLED. Respondent 70: Thank you for looking into our feelings. Respondent 71: I belive we should refrain from the term Disability… Insteat use different ability. Respondent 92: I agree because it is better, but I think it would be even better if we eliminated the word disability to describe people. Respondent 93: It's about respect, and we will probably have to change it again when Saturday Night Live starts saying "in-tel-lec-tu-al" but for now we know how disrespectfully the r word is used so we need to change it. Respondent 95: The law requires definations to meet requirements for services, but these terms become the defination of the individual over shadowing the person.
146 APPENDIX 9: Definitions of Terms Used in Surveys
These Definitions were not provided to participants of either the parent or genetic counselor survey.
1) Mental Significantly subaverage intellectual functioning: DSM-IV-TR Retardation an IQ of approximately 70 or below on an individually administered IQ test (for infants, a clinical judgment of significantly subaverage intellectual functioning). Concurrent deficits or impairments in present adaptive functioning (i.e., the person's effectiveness in meeting the standards expected for his or her age by his or her cultural group) in at least two of the following areas: communication, self-care, home living, social/interpersonal skills, use of community resources, self-direction, functional academic skills, work, leisure, health, and safety. Onset before the age of 18. 2) Intellectual Intelligent quotient (or I.Q.) is between 70-75 or DSM-5 Disability below Significant limitations in adaptive behaviors (the ability to adapt and carry on everyday life activities such as self-care, socializing, communicating, etc.) The onset of the disability occurs before age 18. Intellectual disability involves impairments of general mental abilities that impact adaptive functioning in three domains, or areas. These domains determine how well an individual copes with everyday tasks: the conceptual domain includes skills in language, reading, writing, math, reasoning, knowledge, and memory. The social domain refers to empathy, social judgment, interpersonal communication skills, the ability to make and retain friendships, and similar capacities. The practical domain centers on self-management in areas such as personal care, job responsibilities, money management, recreation, and organizing school and work tasks. While intellectual disability does not have a specific age requirement, an individual’s symptoms must begin during the developmental period and are diagnosed based on the severity of deficits in adaptive functioning. The disorder is considered chronic and often co-occurs with other mental conditions like depression, attention- 147 deficit/hyperactivity disorder, and autism spectrum disorder. 3) a) A severe, chronic disability of an individual that Developmental Developmenta – Disabilities l Disability i. Is attributable to a mental or Assistance and physical impairment or Bill of Rights combination of mental and Act, 2000 physical impairments ii. Is manifested before the individual attains age 22 iii. Is likely to continue indefinitely iv. Results in substantial functional limitations in 3 or more of the following areas of major life activity: 1. Self-care 2. Receptive and expressive language 3. Learning 4. Mobility 5. Self-direction 6. Capacity for independent living 7. Economic self- sufficiency v. Reflects the individual’s need for a combination and sequence of special, interdisciplinary, or generic services, individualized supports, or other forms of assistance that are of lifelong or extended duration and are individually planned and coordinated. The Arc Infants and young children – An individual from birth to age 9, inclusive, who has a substantial developmental delay or specific congenital or acquired condition, may be considered to have a developmental disability without meeting 3 or more of the criteria described above [i-v], if the individual, without services and supports, has a high probability of meeting those criteria later in life.
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b) Sometimes intellectual disability is also referred to as developmental disability which is a broader term that includes ASD (autism spectrum disorders), epilepsy, cerebral palsy, developmental delay, fetal alcohol syndrome (or FASD) and other disorders that occur during the developmental period (birth to age 18). 4) Child with a disability for children aged three The Individuals Developmenta through nine (or any subset of that age range, with lly Delayed including ages three through five), may…include a Disabilities child— Education Act (1) Who is experiencing developmental delays as (IDEA) defined by the State and as measured by appropriate diagnostic instruments and procedures in one or more of the following areas: Physical development, cognitive development, communication development, social or emotional development, or adaptive development; and (2) Who, by reason thereof, needs special education and related services. [34 CFR §300.8(b)]. 5) Intellectual a) In addition, the parenthetical name “(intellectual DSM-5 Development developmental disorder)” is included in the text to Disorder reflect deficits in cognitive capacity beginning in the developmental period.
Child Mind b) Intellectual development disorder (IDD) is a Institute neuro-developmental disorder characterized by deficits in general intellectual functioning such as reasoning, planning, judgment, abstract thinking, academic learning and experiential learning. These may also lead to impairments in practical, social and academic functioning. The symptoms of intellectual development disorder, a relatively new disorder, formerly fell under the umbrella of "mental retardation."
6) Mentally A euphemism for mentally retarded or disabled. Dictionary.com Challenged 1 7) Mentally A general or specific intellectual disability, Dictionary.com Handicapped resulting directly or indirectly from injury to the 1
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8) Cognitively a) “Cognitive disabilities” is often used by U.S. Disabled physicians, neurologists, psychologists and other Department of professionals to include adults sustaining head Health and injuries with brain trauma after the age 18, adults Human with infectious diseases or affected by toxic Services, substances leading to organic brain syndromes and Administration cognitive deficits after the age 18, and with older for Children & adults with Alzheimer diseases or other forms of Families dementias as well as other populations that do not meet the strict definition of mental retardation. Ohio Coalition for the b) Cognitive disability (mental retardation) is a Education of term used when a person has certain limitations in Children with mental functioning and in skills such as Disabilities communicating, taking care of him or herself, and social skills. These limitations will cause a child to learn and develop more slowly than a typical child. Children with cognitive disabilities (mental retardation) may take longer to learn to speak, walk, and take care of their personal needs such as dressing or eating. They are likely to have trouble learning in school. They will learn, but it will take them longer. There may be some things they cannot learn.
1 Terms taken from Dictionary.com are not formal definitions. These terms are typically used as synonyms to the terms mental retardation or intellectual disability in formal definitions.
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