This online toolkit is for Emergency Room Doctors and Personnel to gain quick access to information, tools and peer-reviewed resources that aims to enhance care for people who experience an Intellectual and Developmental Disability (IDD) or an Autism Spectrum Disorder (ASD), during their emergency room visit. This online toolkit focuses on the cultural learning development and competence needed to provide effective, culturally competent, and person-centered care. This toolkit has been compiled from over 250 Self-advocates, people who experience disabilities and their family members, guardians, and other supporters. Funding for this toolkit has been provided by the WITH Foundation. On behalf of the The Arc US, The Arc of Massachusetts, and The Arc Oregon project teams, we hope you find this toolkit helpful, informative, and useful to ensure people with disabilities have more positive experiences and health outcomes in emergency room settings.
Toolkit for Emergency Room Doctors and Personnel
Cultural Competency and Intersectionality
Implicit Bias in Healthcare: Examining the Intersections of Race and Disability
This article describes the difference between implicit and explicit bias and the intersection of race and disability. A self-assessment is included along with case examples and additional information.
Cultural Competence Personal Self-Assessment
This short assessment tool was designed to promote cultural and linguistic competence for health care providers, aimed to heighten awareness of how they view clients/patients from culturally and linguistically diverse (CLD) populations.
Reframing Language Activity
This reframing activity can be used as a personal growth opportunity or done as a group. Reframing is restating a negative word or thought and making it more positive. Reframing is a powerful tool to help us begin changing our mindset by changing our language, which ultimately impacts our behavior and actions.
Effect of the COVID-19 pandemic on the Mental Health of Caregivers of People with Intellectual Disabilities.
This article explores how the measures implemented to manage the COVID-19 pandemic have been shown to impair mental health, which is likely exacerbated for supporters of people with IDD.
The Reported Effects of the COVID-19 Pandemic on People with Intellectual Disability and Their Carers: A Scoping Review
People with IDD are a vulnerable group, which places them at a greater risk of experiencing more severe outcomes from COVID-19. This article includes recommendations for medical professionals related to people with IDD and their carers, in addition to a call for more data in this topic area to establish better guidance in helping to minimize the effects of COVID-19.
In Search of Culturally Appropriate Autism Interventions: Perspectives of Latino Caregivers
This source describes a qualitative study in which 12 Latinx families of children on the autism spectrum were interviewed about obtaining autism services in their respective school systems in Los Angeles County. This study highlights the inequities that Latinx families face when obtaining critical services for their children including lack of funding in school systems with predominantly children of color, resistance from school administrators and experiences with gatekeeping, and not being taken as seriously as their White counterparts. It is important for healthcare professionals to keep such inequities in mind when treating patients. Additionally, physicians can play a key role in assisting Latinx parents in advocating for their children.
‘If I Was a Different Ethnicity, Would She Treat Me the Same?’: Latino Parents’ Experiences Obtaining Autism Services
This source discusses the ways in which educators, specifically, can either hinder or facilitate communication with immigrant, bilingual parents of students with disabilities. Although the focus is on education, each major point is applicable to interactions between healthcare providers and patients/families as well. When communicating with this population, it is crucial that healthcare providers are mindful of a possible lack of English proficiency. They must speak clearly and with as little jargon as possible, fully explain complex terminology, and allow parents to participate in conversation as well in order to foster an environment where shared decision-making is welcome.
Immigrant, Bilingual Parents of Students With Disabilities: Positive Perceptions and Supportive Dialogue.
This source explores the perspectives of parents with children with autism spectrum disorder (ASD) on bilingualism in the home. Qualitative interviews were conducted with sets of both bilingual parents with a child with ASD and bilingual parents of typically developing (TD) children. It has been shown that although many believe speaking more than one language will impede a child with ASD further in their language development, bilingualism actually has many benefits. Such benefits include broadening general intellectual capacity, improving social skills and communication, increasing the likelihood of getting hired in the future, fostering a stronger sense of identity, and progressing child-family relationships. This is of importance to healthcare providers as many families choose to forgo their native languages to avoid confusion. Providers can advise bilingual families appropriately with this information.
Disability and Autism Resources
Improving Experiences of Autistic Patients in Emergency Department Settings
This article provides helpful strategies for supporting a person with autism when they are showing signs of agitation in an emergency department setting. The strategies focus on communication, behavior, and environmental adaptations.
Disability Acronym List
This acronym list is compiled from West Virginia University Center for Excellence in Disability and will help when communicating or coordinating care with a person who experiences disability.
Tackling Healthcare Access Barriers for Individuals with Autism from Diagnosis to Adulthood
Most individuals with autism spectrum disorder (ASD)—a complex, life-long developmental disorder—do not have access to the care required to address their diverse health needs. Here, we review: (1) common barriers to healthcare access (shortage/cost of services; physician awareness; stigma); (2) barriers encountered primarily during childhood (limited screening/diagnosis; unclear referral pathways), transition to adulthood (insufficient healthcare transition services; suboptimal physician awareness of healthcare needs) and adulthood (shortage of services/limited insurance; communication difficulties with physicians; limited awareness of healthcare needs of aging adults); and (3) advances in research/program development for better healthcare access.
Tips for Successful Communication & Collaboration When Supporting People Who Experience Disabilities
This document was developed by The Arc Oregon project team in collaboration with people who experience IDD, family members, guardians, and other supporters. It features a compilation of best practices as it relates to their lived experiences when navigating emergency room settings.
Printable Communication Chart
This two-page, printable chart includes small pictures with words of emergency health care related topics. This can both support a person’s ability to understand and communicate with emergency doctors and personnel.
Checklist of Non-verbal Pain Indicators
This checklist can help understand what a person’s behavior may be communicating related to an underlying health condition, especially if the person receiving care uses non-verbal forms of communication and expression.
The Social Stories™ below have been developed by Health Care Access and Disability Research. They can be downloaded and adapted to any person or situation. These are helpful tools that share information in a visual way to support a person’s understanding about a medical procedure or event.
One Page Profile for the Medical Setting
This template was created by Oregon Family-to-Family Health Information Center and is for people to use as a communication tool for sharing important, person-centered information with medical providers. The goal is to enhance the patient’s experience while navigating the medical system.
Human and Health Care Rights
The Arc’s Health Care Position Statement
The statement focuses on health and wellness. All people, including people with intellectual and/or developmental disabilities1 (IDD), should have timely access to high quality, comprehensive, accessible, affordable, appropriate health care that meets their individual needs, maximizes health, well-being, and function
Applying HHS’s Guidance for States and Health Care Providers On Avoiding Disability-Based Discrimination in Treatment Rationing
The Arc and other national organizations endorse these guiding principles for preventing disability discrimination in COVID-19 treatment rationing.
Providing hospitalized patients with Intellectual and Developmental Disabilities (IDD) with Designated Support Staff During the COVID19 Pandemic: Rationale for Revised Visitor’s Policy
The American Academy of Developmental Medicine and Dentistry has provided a rationale for a revised visitor’s policy that supports Designated Support Staff, during the COVID-19 pandemic, for people with IDD.
Understanding Decision-Making Supports in the Health Care Setting
The National Disability Rights Network provides a summary of how people with IDD can use an approach called supported decision-making (SDM) to help make any type of decision, especially regarding their medical care. People with disabilities seek the support of a family member, friend, or other trusted persons to help make or communicate a decision. Link also includes a short video on how SDM is used in health care and medical treatment decisions.
Frequently Asked Questions on Supported Decision-Making for Medical Professionals
The National Disability Rights Network also provides a summary of frequently asked questions related to SDM for medical professionals in understanding the role of the supporter and how SDM works.
Emergency Preparedness Tools/Abuse Reporting
Disability and Health Emergency Preparedness Tools and Resources
The Centers for Disease Control and Prevention have organized disability and health emergency preparedness tools and resources for emergency professionals, people with disabilities and their supporters. Resources are available in both English and Spanish.
National Hotline - Victim Connect Resource Center
National hotlines can help connect victims, survivors, and their support networks connect with local resources.
Massachusetts Disabled Persons Protection Commission
Frequently asked questions about reporting abuse and neglect by mandated reporters.
State of Oregon Abuse - How to Report Abuse and Neglect
Oregon resource includes information to report abuse and neglect of both adults and children with disabilities.
Funding for this toolkit was provided by the WITH Foundation and developed in partnership with The Arc US, The Arc of Massachusetts, and The Arc Oregon.
- Cedwvu.org. 2021. Disability Acronym List | Center for Excellence in Disabilities. [online] Available at: <http://www.cedwvu.org/resources/disability-acronym-list/> [Accessed 7 December 2021].
- Widgit-health.com. 2021. [online] Available at: <https://widgit-health.com/download files/paramedic-board/Paramedic-symbol-boardUK-A4.pdf> [Accessed 7 December 2021].
- Uoflhealthnetwork.org. 2021. [online] Available at: https://www.uoflhealthnetwork.org/documents/Nursing/CNPI.pdf> [Accessed 7 December 2021].
- Porticonetwork.ca. 2021. [online] Available at: https://www.porticonetwork.ca/documents/38160/869447/ED_Social+Story_ED.pdf/f62 7bd55-17f9-4cfb-be15-3f5b560612db> [Accessed 7 December 2021].
- Ohsu.edu. 2021. One Page Profile for the Medical Setting | OHSU. [online] Available at: <https://www.ohsu.edu/oregon-family-to-family-health-information-center/one-page profiles-medical-setting> [Accessed 7 December 2021].
- Thearc.org. 2021. [online] Available at: <https://thearc.org/wp-content/uploads/2021/05/Health.pdf> [Accessed 7 December 2021].
- Thearc.org. 2021. [online] Available at: <http://thearc.org/wp-content/uploads/2020/04/Guidance-to-States-Hospitals_FINAL.pdf> [Accessed 7 December 2021].
- Ancor.org. 2021. [online] Available at <https://www.ancor.org/sites/default/files/aadmd_visitationpolicystatement_april_2020.pdf> [Accessed 7 December 2021].
- NDRN. 2021. Supported Decision Making and Health Care – NDRN. [online] Available at: <https://www.ndrn.org/resource/supported-decision-making-and-health-care/> [Accessed 7 December 2021].
- NDRN. 2021. Using Supported Decision Making in Health Care: Frequently Asked Questions for Medical Professionals – NDRN. [online] Available at:
Toolkit for Emergency Room Doctors and Personnel
<https://www.ndrn.org/resource/faqs-for-medical-and-other-health-care-providers supported-decision-making-and-health-care/> [Accessed 7 December 2021].
- Documentcloud.adobe.com. 2021. Adobe Acrobat. [online] Available at: <https://documentcloud.adobe.com/link/review?uri=urn%3Aaaid%3Ascds%3AUS%3A8e c4c437-c753-45f1-b354-a185ab7e261e#pageNum=1> [Accessed 7 December 2021]. T Goode,T.D.(1989,revised2002).Promotingcultural andlinguisticcompetenceself assessmentchecklistforhealth care providers
- Reframing Language: Adapted from: Multicultural Early Childhood Team Training Leadership Institute & PEATC
- Hutchings, H., Watkins, A., Hiles, S., & Cooper, V. (2020). Effect of the COVID-19 pandemic on the mental health of caregivers of people with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities (JARID).
- Doody, O., & Keenan, P. M. (2021). The reported effects of the COVID-19 pandemic on people with intellectual disability and their caregivers: a scoping review. Annals of medicine, 53(1), 786–804.
- Angell, A. M., & Solomon, O. (2017). ‘If I was a different ethnicity, would she treat me the same?’: Latino parents’ experiences obtaining autism services. Disability & society, 32(8), 1142– 1164.
- Cheatham, G. A., & Lim-Mullins, S. (2018). Immigrant, Bilingual Parents of Students With Disabilities: Positive Perceptions and Supportive Dialogue. Intervention in School and Clinic, 54(40–46).
- DuBay, M., Watson, L. R., & Zhang, W. (2018). In Search of Culturally Appropriate Autism Interventions: Perspectives of Latino Caregivers. Journal of autism and developmental disorders, 48(5), 1623–1639
- Centers for Disease Control and Prevention. 2021. Disability and Health Emergency Preparedness Tools and Resources | CDC. [online] Available at <https://www.cdc.gov/ncbddd/disabilityandhealth/emergency-tools.html> [Accessed 7 December 2021].