This video features Special Olympics Chairman Timothy Shriver and our athletes discussing why it's so important to include people with intellectual disabilities in all areas of life-especially healthcare access. The first step is learning how to communicate with respect, compassion, and care.
Whether you're in a professional environment or just having a personal conversation, consider these 10 basic rules for communicating with a person with an intellectual disability.
As part of its 2020 CARES Act Telehealth Award from The Health Resources and Services Administration (HRSA), Family Voices National created a Telemedicine Curriculum titled the Nuts and Bolts of Telemedicine: Essentials for a Family-Centered Experience.
The curriculum includes four webinars:
There is a recording of each webinar that serves as a train-the-trainer so presenters can familiarize themselves with the information. There is an accompanying set of PowerPoint slides and talking points, in English and Spanish, that presenters can use "as is" or adapt to best need the needs of the families they serve.
The PRACTICAL Tool was originally created by the American Bar Association for attorneys to help them identify and support implementing decision-making options for persons with disabilities that are less restrictive than guardianship. Like attorneys, healthcare providers may find themselves involved with families and patients as they navigate similar issues, and also like attorneys, little has been done historically to prepare them for attending to the full breadth of decision making support options available.
This manual begins with the PRACTICAL Tool, amended for use by healthcare providers, and then moves into a more detailed overview of patient-centered care (Part I) and other decision making supports that do not involve the removal of rights (Part II).
This video provides information on Supported Decision Making in Health Care and Medical Treatment Decisions, including FAQs for medical and health care providers, for people with disabilities, and their family, friends, and advocates.
The production of this video was funded by a grant from the WITH Foundation. The contents do not necessarily represent the official views of the WITH Foundation. This video is for informational purposes only and not for the purpose of providing any legal advice.
Disability can impact communication. Identifying a patient’s disability and its potential impact on effective communication is the first step in reducing the risk of miscommunication. The type of disability – whether intellectual, sensory, mobility or mental health – will help determine the kind of accommodation needed. Usually minor accommodations can be made to ensure effective communication. There are many options for auxiliary aids and services to ensure effective communication. Health care providers and their staff can develop skills and acquire tools that will allow them to successfully provide accommodations to patients with disabilities. This guide will provide information to help you communicate effectively with your patients with disabilities.
JFK Partners is a program of the Department of Pediatrics of the University of Colorado School of Medicine located at the Anschutz Medical Campus in Aurora, Colorado. Designated as Colorado's University Center of Excellence in Developmental Disabilities (UCEDD) and Leadership Education in Neurodevelopmental Disabilities (LEND) Program, JFK Partners has collaborative relationships with numerous organizations that are a part of Colorado's developmental disability and special health care needs communities.
The purpose of JFK Partners is to provide:
This online training provides foundational knowledge about people with disabilities, the health disparities that they experience, and how local health department staff can include people with disabilities in their public health programs and services.
Foundational Principles and Guidelines for Sustainable Inclusion of People with Intellectual Disability is designed to provide organizations with the necessary foundation to move towards the full and sustainable inclusion of people with ID as they work to improve overall population health. This foundational resource also provides organizations with strategies to better understand what actions they can take to improve inclusion of people with ID in their existing policies, programs, and services. Using this resource to develop an action plan, specific to the goals and capacity of the organization, a program or organization can outline strategies to identify where the organization is (assessment), what steps to take (implementation), and whether it is doing what it intended to do (evaluation).
The goal of inclusive health is to promote inclusion of people with ID in health systems that serve the general public, including their policies, programming and services, training programs, research, and funding streams.
Including People with Disabilities: Public Health Workforce Competencies outlines recent advances in knowledge and practice skills that public health professionals need to include people with disabilities in the core public health functions - Assessment, Policy Development and Assurance. This document provides strategies to meet the competencies and real examples of how people with disabilities can be successfully included in public health activities. These competencies align with existing broad public health competencies, and compliment them. These existing competencies include those developed by the Association of Schools and Programs of Public Health, Masters in Public Health Core Competencies; Public Health Accreditation Board; Public Health Foundation Core Competencies for Public Health Professionals, Council on Linkages Between Public Health and Academia, and the 10 Essential Public Health Services. In addition, they foster workforce capacity-building priorities, such as the Healthy People 2020, Disability and Health Objective DH-3.
An infographic that providex information about the 61 million adults in the United States that re living with a disability. Use this infographic to join CDC and its partners to work together to improve the health of people living with disabiltiies.
About 1 in 4, or 61 million, U.S. adults reports having some form of a disability. Disability is part of the human experience, but sometimes people use words or phrases that are insensitive and do not promote understanding, dignity, and respect for people with disabilities. Most often than not, this is not intentional, but is disrespectful just the same. Use this factsheet to learn more about plain language and tips for communicating with and about people with disabilities.
Adults with disabilities experience significant health disparities compared to adults without disabilities. To improve the health of this population, state epidemiologists, researchers and public health professionals need access to accurate and timely data to inform their state’s health promotion activities. The U.S. Centers for Disease Control and Prevention (CDC) created Disability and Health Data System (DHDS) to provide quick and easy access to data on demographics and health information for adults with disabilities. Learn more about DHDS in this informative factsheet.
The CDC-funded New Hampshire Disability and Public Health project (DPH) is a collaboration between the University of New Hampshire Institute on Disability and NH Division of Public Health Services. The project goal, to promote and maximize health, prevent chronic disease, improve emergency preparedness and increase the quality of life among people with disabilities, is achieved through activities that focus on infusing disability components into existing public health programs and initiatives.
Adults with disabilities living in rural areas typically rely on services that are more informal and less specialized. They must travel farther and pay more for those services, and they tend to receive lower quality care than their urban counterparts. Local health departments play a crucial role in filling resource and service gaps that face rural America. This resources provides five approaches health departments can follow to promote the health and well-being of people with disabilities who live in rural areas.
The card is to assist Medical Professionals and Deaf and hard of hearing individuals communicate better regarding assessment of COVID-19 symptoms. Deaf or hard of hearing individuals can use the icons to help communicate their preferred method of communication, symptoms, severity, and time frame of symptoms.
The New Hampshire Disability & Public Health Project (DPH) is a collaboration between the New Hampshire Division of Public Health Services and its Bona Fide Agent, the Institute on Disability (IOD) at the University of New Hampshire. The overarching goal of the collaboration is to improve the health and quality of life of people with disabilities in NH by strengthening the capacity of the state's public health programs and initiatives to include people with intellectual disabilities and mobility limitations.
The Responsive Practice training is online, on-demand, free for a limited time, and eligible for continuing education & continuing medical education credits. Responsive Practice enhances health care providers' ability to deliver culturally competent, accessible care to people with intellectual, mobility, and other disabilities. This training focuses on accessible and adaptive communication for patients with disabilities.
This website contains a list of materials and resources to assist physicians in healthcare to gain an understanding of the health and development of individuals with disabilities.
The Developmental Disabilities Primary Care Program is a program of Surrey Place, Toronto. Surrey Place provides specialized clinical services to children and adults with intellectual and developmental disabilities in the Toronto Region. Surrey Place is affiliated with the University of Toronto and other academic institutions and is a teaching site for students in a variety of health care professions.
At Let's Go!, we believe that children with intellectual and developmental disabilities (I/DD) deserve the same opportunities to lead healthy lives as those offered to typically developing children. To ensure our 5-2-1-0 programs are inclusive of all children, we've developed a toolkit for Children with Intellectual and Developmental Disabilities (I/DD) to address their unique needs. These tools are specifically designed for professionals such as yourself who work with children with I/DD and they complement our multi-setting 5-2-1-0 programs. Registered sites in Maine and Mount Washington Valley, New Hampshire, receive a free hard-copy toolkit. For all others, Let's Go! offers free online access to our Developmental Disabilities (I/DD) toolkit in an easy-to-use format, as well as printable PDFs of individual pages.
In this Interprofessional Virtual Grand Rounds presentation Dr. Thad Woodard and Molly Rutledge, Speech-Language Pathologist, present cases that will highlight communication strategies for working with patients with IDD, and how providers can involve patients with IDD in their health decisions. Rain Van Den Berg, MPH, and LEND Training Coordinator share resources to learn more.
The IDD Toolkit was created with a grant from The WITH Foundation. This toolkit provides resources and training to assist medical professionals serve adults with intellectual and developmental disabilities.
The Florida Center for Inclusive Communities (FCIC) recognizes that good health is vital to enjoying all other life activities. People with developmental disabilities often have difficulty accessing appropriate high-quality healthcare oftentimes because health care providers lack training or familiarity with the support people with developmental disabilities need.
FCIC is addressing this issue by undertaking activities that:
a) Educate health care providers to be sensitive to the special health needs of people with disabilities
b) Assist individuals and their caregivers to be proactive about knowing and communicating their own health needs across their lifespan.
Access helpful resources by clicking on the "Materials & Resources" or "XCEL Training" (www.xcel.flcic.org).
This is an online resource for healthcare providers to share with self-advocates, family members and caregivers. This visually based website focuses on plain language information about health for individuals with IDD and their families. Access the website at: My Health Toolkit
A presentation on American Sign Language, deaf culture, and working with interpreters.
Institute on Disabilities at Temple University
This presentation focuses on identifying physicians' roles in promoting self-advocacy and health self-management for their patients with intellectual/developmental disabilities.
Westchester Institute for Human Development
Resources from the Developmental Medicine Workshop were shared in a document to be available for medicine residents.
This resource is an article on health self-management from the perspective of a self-advocate. Mitchell Levitz shares personal experiences and advice on how individuals with disabilities can manage their own health and be self-advocates.
Lack of medical training results in physicians being unprepared to provide care to people with disabilities, which, in turn, contributes to the substantial health disparities that are evident in this population. Few medical schools or primary care residencies address the care of adults with disabilities. Competencies and guidelines to assist American physicians in caring for patients with physical or intellectual disabilities have yet to be established, thus making educational goals unclear. This article describes one novel training module regarding people with disabilities that was developed at the University of South Florida Health, Morsani College of Medicine (USF) and inserted into the primary care clerkship during a major curriculum redesign in 2005. Since then, all USF third-year medical students have been required to participate in this disability-related course component. The authors describe the module's development and integration into the primary care clerkship, as well as the specific elements of their curriculum.
This list provides information and resources for developmental diagnosis and referal for early intervention.
An evaluation form used to determine the participant's understanding of developmental diagnosis and early intervention.
This assignment has readings created for medical students or resident education. Read through this case and be prepared to discuss the listed key concepts related to developmental disabilities and competencies.
This is a comprehensive training for Nurse Practitioners (NP) on disability care. This content addresses a long-standing problem that affects a very underserved and vulnerable group that is growing exponentially. The materials found on this website provide nursing faculty with curricula content that can be integrated into the existing curriculum. Content includes competencies for NPs caring for people with disabilities, references and resource lists, standardized patient cases/case studies, a pre/post quiz and slide presentation, and video clips depicting positive and negative NP patient interactions to help address the lack of knowledge about people with disabilities in NP education.
This video was recorded for training Physician Assistants on interacting with Deaf patients. This lesson includes basic American Sign Language (ASL) for brief communication with deaf patients.
The Autism Friendly Initiative at Boston Medical Center aims to improve the hospital experience for patients with autism spectrum disorder (ASD). Patients with ASD have various sensory and communication needs, which can make the fast-paced and often over-stimulating hospital environment particularly challenging. To address the needs of patients with ASD, we strive to make the hospital environment more autism-friendly, educate clinicians and staff, and provide resources to patients. We believe these efforts will lead to better hospital experiences, and ideally, better outcomes, for patients with ASD.
The outcomes of this module are for participants to first, better understand the concept of Culture and the intersectionality of cultures. Second, to learn how to effectively communicate with diverse patients with disabilities in a health care setting. And third, to have access to tools to create an inclusive health care environment.
This model covers topics that include communicating with patients with disabilities from diverse cultures within the healthcare field (including doctors, dentists, nurses, front line staff) and ensuring they have equitable access to quality health care. Built into this module are pre and post-self assessments to gauge what you have learned, videos, case studies to apply the knowledge you have learned, and tools you can print and share.
The outcomes of this module are for participants to first, better understand the concept of Culture and the intersectionality of cultures. Second, to learn how to effectively communicate with diverse patients with disabilities in a health care setting. And third, to have access to tools to create an inclusive health care environment.
This module touches on the theories of the intersectionality of identities and cultural agility that was first highlighted in module 1. It highlights some data about why these theories are becoming increasingly important. Built into this module pre and post-self assessments to gauge what you have learned, videos, and tools you can print and share. Some case studies to apply the knowledge you have learned are also included.
This toolkit provides information about health disparities for people with disabilities and the need for educational standards, the Core Competencies on Disability for Health Care Education, and use of the Delphi method to gain consensus on these standards. These resources can be helpful in making the case to organizational leadership or committees to provide an official endorsement of the competencies.
This resource is a Responsive Practice brochure that provides information on training for mammography technologists. This program discusses the barriers that women with disabilities face and different strategies mammography technologists can use to best serve women with disabilities.
This is a tool for medical and residency student education learning. In this assignment:
1) You will be able to discuss the Ecobiodevelopmental Model (EBCD) and the science of Toxic Stress.
2) You will find an evidence-based article regarding early brain and child development and will be able to "translate" information into an email/handout for parents.
3) You will use a Baby Buffer email prescription to give parenting advice via a role play.
This resource is an educational tool for first-year medical students to gain information about:
1) The healthcare needs of patients with disabilities
2) The effects of the disability on the patient/family health and wellness
3) Key factors in optimizing the care for patients with disabilities
4) Describe the challenges for people with disabilities in accessing health-related services
5) Apply "person-centered" and "family-centered" approaches to working with people with disabilities
This is a guided session between first-year medical students and individuals with disabilities and their parents/adult siblings.
"People First Language puts the person before the disability, and describes what a person has, not who a person is." Visit www.disabilityisnatural.com to see the original, full-length article.
This is a factsheet provided for medical students to understand stigmatizing attitudes about disabilities. For people with disabilities, stigma can be a major barrier to participation. Stigmatizing attitudes about disabilities can also affect relationships between patients and providers. However, health care providers can be allies with their patients and help reduce the impact of stigma.
The University of Washington, Healthy Aging & Physical Disability
Are you in social work,pre-med, nursing, oral hygiene, or other health related fields? Come and learn how you can work better with and improve the health outcomes for your future patients that experience intellectual and developmental disabilities (IDD).
This kit contains:
1) Facilitator guide
2) Link to presentation (Google doc)
3) Link to training video (YouTube)
4) Health Literacy Activity Handout
5) Slides (PDF)
6) Slides Handout (PDF)
7) Evaluation form
8) Sample flyer
This PowerPoint is a Co-Curricular Disability Home Visiting Training Module with proper language and cultural competencies for engaging with families with children with intellectual and developmental disabilities. Learner objectives:
- Understand and use person first language
- Identify two culturally competent practices
- Define two possible issues families with children who have disabilities may experience that can result in them not following Physician's recommendations for treatment
Wayne State University School of Medicine
Autism 101 is a PowerPoint presentation for medical students that address the unique needs of patients with autism through staff training, environmental adaptation, and protocol adjustment.
The Autism Friendly Initiative at Boston Medical Center aims to improve the hospital experience for patients with autism spectrum disorder (ASD). Patients with ASD have various sensory and communication needs, which can make the fast-paced and often over-stimulating hospital environment particularly challenging.
The Sensory Toolbox Training is designed to facilitate successful appointments for patients with autism spectrum disorders (ASD). It includes items to help communication between staff and patients, ease sensory overstimulation, and promotes appropriate interactions with the patient
This presentation provides social and historical context of dispiarities that impact individuals with disabilities. Guiding Questions:
1) What is disability? How does it differ from impairment?
2) What factors affect health care and health disparities among people with disabilities?
3) How does intersectionality impact health disparities within the disability community?
This FREE, SELF-PACED ABLEx Series aims to improve the health of people with intellectual disabilities around the world. More than 120 contributors from 22 countries have provided content. The courses are tiered to fit with Years 1, 2, 3 of any health, medical, or related degree. They can also be used for workforce education. Anyone can do the courses - they are open to everyone!
The ARIE Co-Curricular Initiative Project is a collaborative project between the Michigan Developmental Disabilities Institute and the Wayne State University College of Medicine, to assist medical students in obtaining volunteer hours that enhances their educational curriculum. This resource is a case study that aims to help medical students understand the needs of patients and families with intellectual and developmental disabilities.
The Michigan Developmental Disabilities Institute's (MI-DDI) award-winning Possibilities series of videos focuses on the lives and accomplishments of individuals with developmental and intellectual disabilities. Each 4-7 minute video highlights the journeys of different individuals, along with their family and friends, and illustrates the lives possible for all people as they mature, become independent, and pursue their life's dreams and goals. The purpose of the Possibilities series is to present a vision of how individuals with developmental and intellectual disabilities and their families can lead the lives that they wish to lead, without barriers and in the direction they truly intend to go. The hope is that these films are viewed and shared by anyone looking to explore all of the possibilities that life has to offer!
These modules are designed to build knowledge about the adult phase of the life course continuum of health and health care for people with developmental and intellectual disabilities (ID). By participating in this curriculum, trainees will gain knowledge and perspective concerning: common health issues for adults with ID; socio-cultural influences on the health of adults with ID; self-determination and person-centered care as essential elements of health promotion and healthcare for adults with ID; the importance of competitive employment and place of residence on health status; and the central importance of optimal health status on quality of life and on the ability of adults with ID to live the lives they desire in inclusive communities.
Additional Related Materials on Adult Health of Individuals with Disabilities
Queensland Centre for Intellectual and Developmental Disability (QCIDD) provides a number of resources that aim to improve the health and wellbeing of adults with an intellectual and developmental disability who live in Queensland through clinical practice, education, research, and advocacy.
Information and resources to help teens and young people with intellectual and developmental disabilities, families and caregivers to address transitioning from pediatric to adult health care, independent living, and becoming a self-advocate.
The Responsive Practice training is online, on-demand, free for a limited time, and eligible for continuing education & continuing medical education credits. Responsive Practice enhances health care providers' ability to deliver culturally competent, accessible care to people with intellectual, mobility, and other disabilities. This training focuses on providing health care and screenings to individuals with disabilities.
The Autism Friendly Initiative at Boston Medical Center has a list of helpful tips for healthcare professionals to improve interactions with patients with Autism.
This resource outlines what is expected to learn while working with children and youth with Special Health Care Needs (CYSHCN). This information is helpful to faculty responsible for directing a development rotation for pediatric residents. The overview lists the various activities for residents who spend the mandatory month during their internship year.
Key messages on talking with deaf patients cultivated from conversations between healthcare providers and patients with lived experiences.
This resource provides information healthcare providers about telehealth options.
The Taking Charge of My Health Care Toolkit is designed to provide health and health care advocacy education and resources for people with intellectual and developmental disabilities and those who support them. The toolkit also provides resources for disability service providers and family members who play an integral role in providing support to self-advocates.
Oregon Office on Disability and Health at Oregon Health & Science University
This checklist is not intended to measure the cultural and linguistic competence of any given medical home team. Rather, it is designed to provide a structure for discussion and self-examination. It is also designed to facilitate the programmatic and organizational change necessary to respond effectively to culturally defined beliefs, practices, and preferences and the inherent issues they raise in the provision of health care and related services for youth and their families.
The National Curriculum Initiative in Developmental Medicine (NCIDM)uses its platform to improve curricula for medical schools and residency programs. People with ID/DD experience significant disparities in the quality of healthcare that they receive. As a result, they are kept in poorer health and can be expected to die at a younger age than their non-disabled cohort. This resource provides background on the mission of NCIDM and projects that are created to achieve their goal of improving curricula to be inclusive of treating people with ID/DD.
XCEL - Excellent (X) care to patients with DD through improved Communication (C), Environment (E), and Logistics (L).
XCEL was developed by the Florida Center for Inclusive Communities (FCIC) and is designed to give quick tips in an entertaining way to reception/support staff who interact with people with developmental disabilities in healthcare settings.
American Academy of Developmental Medicine and Dentistry created a webseires that aims to provide information about patients with intellectual and developmental disabilities. Topics include healthcare financing, health transtition, medication management, and more!
Developmental disabilities curriculum outline from UCSF medical school.
Systematically plan and institutionalize a curriculum in developmental disabilities (DD), including children, adolescents, and adults and integrate it into the undergraduate medical school curriculum to ensure that every medical student graduating from the UCSF School of Medicine will have basic skills, knowledge, and attitudes necessary to care for patients with developmental disabilities.
The Core Competency Training series provides a comprehensive training curriculum to front line staff providing care coordination (including case managers, care coordinators, etc.) from a wide range of medical, social, and community service organizations in communities state-wide. Core curriculum will cover competencies related to care coordination and disability awareness. Additional training opportunities include advanced care coordination training, care coordination training for managers and supervisors, and "train the trainer" training. In total, 34 separate training opportunities are available to up to 240 participants state-wide.
This website features information, continuing education opportunities, resources, and more for health and health care professionals to learn about culturally and linguistically appropriate services, or CLAS. Launched in 2004, Think Cultural Health is sponsored by the Office of Minority Health.
Combatting the spread of the Zika virus in the United States and territories as well as helping those who are already affected requires a public health response. This includes the coordination and collaboration of health care systems, providers, and families at the national, state and local levels. In this rapidly changing environment, HRSA has made helping our programs address this public health threat a top priority.
This resource is focused on the comprehensive health needs of infants and children affected by Zika Virus (ZIKV). It is intended as a planning resource for states and ommunities as they develop a coordinated response to meet the immediate and long term needs of infants and children affected by ZIKV, and their families. The resource guide applies a system of care approach and builds on existing Federal and State services and programs for supporting children with special health care needs (CSHCN). This information will assist states and communities in effectively leveraging and integrating existing programs and assessing programmatic flexibilities to augment their systems of care to address ZIKV.
You take medicines to help with health problems. Medicines can help you live a healthier life. You
have to be careful because medicines can also cause problems. There are four things you should
do to be safe.
This fact sheet provides important information on effective medicine use for women with intellectual disailities. Medicines can treat health problems and help you live a healthier life. When used incorrectly, medicines can also cause serious health problems. Many of these problems can be prevented. Learn four (4) tips to avoid common medicine mistakes.
How your child plays, learns, speaks, and acts offers important clues about your child's development.
Developmental milestones are things most children can do by a certain age. Take this with you and talk with your child's doctor at every visit about the milestones your child has reached and what to expect next.
La manera en que su hijo juega, aprende, habla y actúa nos ofrece pistas importantes sobre cómo se está desarrollando el niño. Los indicadores del desarrollo son las cosas que la mayoría de los niños pueden hacer a una edad eterminada. En cada visita médica de su hijo, lleve esta información y hable con el pediatra sobre los indicadores que su hijo alcanzó y cuáles son los que debería alcanzar a continuación.
The Fogarty International Center has provided top news and resources that address the Zika Virus.At NIH, the National Institute of Allergy and Infectious Diseases (NIAID) is working with its partners in government, academia, and the pharmaceutical and biotechnology industries to better understand Zika virus, the disease it causes, and ways to combat it. The National Institute of Child Health and Human Development (NICHD) at NIH is studying how Zika virus infection affects reproductive health, pregnancy, and the developing fetus. NIH is also funding many research projects to study Zika virus.
Compared to people without disabilities, people with disabilities are at a higher risk for poor health outcomes such as hypertension, obesity, fall-related injuries, and depression. Knowledge about the health status and public health needs of people with disabilities is essential for addressing these and other health disparities. However, most public health training programs do not include curricula on people with disabilities and methods for including them in core public health efforts. There is a clear need for public health efforts to reduce health disparities among people with disabilities. This may be achieved by building a stronger public health workforce skilled in ways to include people with disabilities in all public health efforts.
Association of University Centers on Disabilities (AUCD)
The National Association of County and City Health Officials' (NACCHO's) Health and Disability program works with local health departments (LHDs) to increase the inclusion and engagement of people with disabilities into all public health programs, products, outreach, and services. Findings from a recent national survey of LHDs (Table 1) suggest that many LHDs provide reproductive health services to members of the general population; however, very few specifically include people with disabilities in these services.1 The purpose of this fact sheet is to educate and raise awareness of LHDs about the importance of including men and women with disabilities in existing reproductive health programs and services offered by LHDs.
Local health departments (LHDs) can help to reduce andeliminate disparities in health experienced by people with disabilities by including them in all health programs, services, and activities. In spring 2014, the National Association of County and City Health Officials (NACCHO) surveyed LHDs across the country to understand better how they were including people with disabilities in programs and services. One respondent, Region 2 of the Louisiana Office of Public Health, stood out as being particularly inclusive of people with disabilities in public health practice. The Louisiana Office of Public Health met with NACCHO to discuss how the health department includes people with disabilities in its public health practice.
The cases of this module are designed for LEND and UCEDD trainees to learn more about the adult phase of the life course continuum of health and health care for people with developmental and intellectual disabilities. By participating in this case-based curriculum, LEND and UCEDD trainees will gain knowledge and perspective concerning: common health issues for adults with ID; socio-cultural influences on health of adults with ID; self-determination and person-centered care as essential elements of health promotion and healthcare for adults with ID; the importance of competitive employment and place of residence on health status; and the central importance of optimal health status on quality of life and on the ability of adults with ID to live the lives they desire in inclusive communities. These cases were created by the Association of University Centers on Disabilities (AUCD) and Westchester Institute for Human Development UCEDD, with input from the Nisonger Center UCEDD and Sonoran UCEDD, and with support from the HealthMeet Project of The Arc.
This module is designed to help trainees, students and health professionals to increase their knowledge and skills to improve communication with people with intellectual disabilities (ID). The resources in this module concern: communication during health care and wellness encounters with people with ID; cultural and linguistic competence in communication; working with interpreters; inclusion strategies in written and electronic communication; language use to demonstrate respect; supporting self-determination in health; the use of technology for effective communication; and communication with people with sensory challenges and language differences.
This report summarizes recommendations that were developed to establish a more consistent approach to operationalizing the case definition for the purpose of public health surveillance among adults with intellectual disability in the United States. This approach was designed to allow for research and analysts to build sample frames from existing data, and to recognize where they may be missing a given population. It can also be used to inform the development of targeted survey questions.
This report includes recommendations for the Health Surveillance of People with Intellectual Disabilities in the United Stated. Recommendations include:
1. Identify adults with ID using ICD and other codes in medical service claims
2. Link multiple existing data sources for health surveillance
3. Include valid and reliable questions in existing surveys to identify people with ID
4. Incorporate promising methods to include representative sample of adults with ID
5. Incorporate question and response options in existing surveys to facilitate participation of adults with ID and their proxies
Women with disabilities are as likely and sometimes more likely to get breast cancer as the general population due to having more risk factors than women in general. Because there's no sure way to prevent breast cancer, it's important to take care of yourself by having regular screenings to find breast cancer early, when breast cancers often respond well to treatment and the chance for survival is high. These tip cards stress the importance of early screening and give recommendations for you to follow. Also covered are the diagnosis, treatment issues, and insurance coverage.
Take charge of your breast health and be a self-advocate. Getting early breast cancer screening can save your life!
The Guidelines provide suggestions on ways psychologists can make their practices more accessible and disability-sensitive, and how they might enhance their working relationships with clients with disabilities. Additionally, the Guidelines provide information on how psychologists can obtain more education, training and experience with disability-related matters.
This document provides guidelines and recommendations to help health care professionals ensure equal use of the facility and services by all their patients. The information in this guide gives health care providers a better understanding of how to improve not only the physical environment, but also their personal interactions with patients with disabilities. There is also a review of some of the design standards established through state and federal laws, such as the Americans with Disabilities Act (ADA), that health care professionals need to know.
This guide encourages health care professionals to go beyond the minimum requirements set by law to make facilities and services universally usable to the greatest extent possible. By meeting the needs of people with disabilities, you will also be providing enhanced facilities and services to all your patients.
This course is designed to increase the capacity of health care providers in Florida to provide quality healthcare to persons with disabilities. This training will present various disability issues and strengthen participants' competence in sensory and physical disabilities. Presented by Susan Havercamp, PhD, licensed psychologist and Assistant Professor at the Florida Center for Inclusive Communities, UCEDD, Florida Mental Health Institute / DARES, University of South Florida.
Relatively little research has been conducted comparing the health of people with disabilities to that of people from racial and ethnic minority groups. However, research has consistently documented that, as a group, people with disabilities experience worse health than the general population.The purpose of this chart book is to answer the question of whether working age (18-64) people with disabilities in the United States experience health disparities similar to those experienced by members of racial and ethnic minority groups in the United States.
HealthMatters: Community Academic Partnership (CAP) is a collaboration between university and community based organizations who support people with developmental disabilities (DD). HealthMatters: CAP aims to improve health of people with DD by evidence-based training and curricula by involving community providers to provide practical solutions to sustainable changes. We hope this website will give you useful information on health promotion for individuals with developmental disabilities.
Healthy Living with a Disability under the auspices of the California Department of Public Health (CDPH), Safe and Active Communities (SAC) Branch, started operations July 1, 2002 under a cooperative agreement with the Centers for Disease Control. Healthy Living with a Disability has a mission statement of promoting the health and quality of life of people with disabilities (PWD) and to prevent or lessen the effects of secondary conditions through collaborative leadership to affect environmental, policy and systems changes.
This site provides information on Developmental Screening, Autism Spectrum Disorders, Asperger Syndrome, Cerebral Palsy, Vision Loss, Intellectual Disability, Hearing Loss, ADHD (Attention-Deficit/Hyperactivity Disorder), and Fetal Alcohol Spectrum Disorders (FASD). Links provide resources for developmental screening and milestones and other early screening, detection, and education materials.
National Center on Birth Defects and Developmental Disabilities (NCBDDD)
The 2011-2012 Montana Mammography Directory provides information on mammography service providers by city. Each entry includes contact information, hours of operation, standard and additional services available, and disability access information.
The Florida Center for Inclusive Communities' (FCIC) My Health Passport is a document that should be completed by an individual (and/or their caregiver), to describe important aspects about their special health care needs. My Health Passport was designed to be shared with many types of healthcare providers, in clinic and hospital settings. It is especially useful for providing pertinent information to those who are not very familiar in providing care to individuals with intellectual/developmental disabilities.
The Florida Center for Inclusive Communities (FCIC)
The Florida Center for Inclusive Communities' (FCIC) My Health Passport is a document that should be completed by an individual (and/or their caregiver), to describe important aspects about their special health care needs. My Health Passport was designed to be shared with many types of healthcare providers, in clinic and hospital settings. It is especially useful for providing pertinent information to those who are not very familiar in providing care to individuals with intellectual/developmental disabilities.
The Florida Center for Inclusive Communities (FCIC)
The National Center on Birth Defects and Developmental Disabilities (NCBDDD) strives to advance the health and well-being of our nation’s most vulnerable populations. Although our efforts are broad and far-reaching, we have identified four critical Center-level thematic areas.
- Saving babies through surveillance, research, and prevention of birth defects and infant disorders
- Helping children live to the fullest by understanding developmental disabilities
- Protecting people by preventing the complications of blood disorders
- Improving the health of people living with disabilities
National Center on Birth Defects and Developmental Disabilities (NCBDDD)
This webpage provides information for women with disabilities on getting a mammogram. The brochure covers factors that contribute to successfully getting a mammogram, accessibility and equipment, training and education, and health care provider screening and facility tips.
For more than 10 years, Special Olympics has been serving athletes by offering free health screenings and health information at local, regional and World Games. In the process, Special Olympics has become the largest global public health organization dedicated to serving people with intellectual disabilities. This webiste includes information on their inclusive efforts and their most recent health report.
This is a national campaign aimed at raising awareness that women with disabilities face the risk of breast cancer too. Women with disabilities face many barriers in accessing screening and care for breast cancer. Learn the facts about breast cancer and why screening should be a regular part of your health care.
National Center on Birth Defects and Developmental Disabilities (NCBDDD)
This tip sheet provides resources and tips that women with disabilities can use to understand and prepare for getting a mammogram.
A resource to help youth and young adults with special health care needs and disabilities make a successful transition to adult living that includes their education, health and community living.
This webinar discusses existing approaches to transitioning youth and young adults from pediatric to adult health care systems. The webinar was hosted by the Health and Disability Special Interest Group (SIG).
WHO provides key facts on disability and health and information on how our communities can better serve individuals with disabilities.
The Youth Transition Toolkit is a comprehensive resource guide for youth with disabilities ages 12 to 28+. The overall objective is to help transitioning youth become better prepared and more successful transitioning from youth to adulthood. It provides information and resources on transition for youth with disabilities, including worksheets and tips for parents.
San Diego State University Interwork Institute & California Health Incentives Improvement Project
Dental care isn't always easy, but you can make it work for you and the person you help. This booklet will show you how to help someone brush, floss, and maintain oral health.
National Institute of Dental and Craniofacial Research at the National Institutes of Health
The Florida Center for Inclusive Communities (FCIC) has developed health and wellness brochures to provide individuals with developmental disabilities with important information about living a healthy life. All brochures are available to download as pdfs documents. This brochure provides information on how to protect yourself from abuse, neglect, and exploitation.
The Florida Center for Inclusive Communities (FCIC) has developed health and wellness brochures to provide individuals with developmental disabilities with important information about living a healthy life. All brochures are available to download as pdfs documents. This brochure provides information about the importance of early oral hygiene for people with disabilities.
The Florida Center for Inclusive Communities (FCIC) has developed health and wellness brochures to provide individuals with developmental disabilities with important information about living a healthy life. All brochures are available to download as puffs documents. This brochure provides information about oral health for people with disabilities.
The Florida Center for Inclusive Communities (FCIC) has developed health and wellness brochures to provide individuals with developmental disabilities with important information about living a healthy life. All brochures are available to download as pdfs documents. This brochure provides information about sleeping difficulties, the importance of sleep, and resources for help with sleep difficulties.
Title III of the Americans with Disabilities Act requires public accommodations to provide goods and services to people with disabilities on an equal basis with the rest of the general public. The goal is to afford every individual the opportunity to benefit from our country's businesses and services, and to afford our businesses and services the opportunity to benefit from the patronage of all Americans. This resources provides a checklist for existing facilities to follow to acheive barrier removal.
The Community Action Guide outlines the principle underlying community engagement and strategies for successful engagement. It's a practical hands-on guide that includes step-by-step descriptions of the community engagement process, checklists for conducting successful events, toos for assessing the access in a given community. examples of how the community Engagement Initiative process has been applied.
In all states, people with disabilities are more likely to report costs being a barrier to care compared to people without disabilities. Interested in your state? Use this resource to determine how costs might limit access to health care among people with disabilities compared to those without.
National Center on Birth Defects and Developmental Disabilities (NCBDDD)
Obtaining and maintaining health insurance coverage and quality healthcare is a critical issue for everyone in the United States, but people with disabilities face additional barriers to receiving adequate healthcare. This resource addresses the needs of individuals with disabilities and statistics and stories that demonstrate where the healthcare system lacks to address these needs.
Many public health, health promotion and human services programs use elements of peer support as a way of connecting people with shared experiences and program goals. For example, online health communities and social networks can help connect people with similar health conditions and can play a supporting role in navigating the health care system. This webinar provides examples of public health programs that have used peer support as a tool for involving and motivating participants and impacting public health outcomes. Panel members shared specific examples from their programs, and participated in a question and answer session on this issue.
In response to the Surgeon General's A Call to Action to Improve the Health and Wellness of Persons with Disabilities, the U.S. Office on Disability, in collaboration with the Department of Labor Office on Disability Employment Policy (ODEP), initiated a National Work Group to ensure that medical, nursing and dental students receive training in providing high-quality care to patients with disabilities.
As part of this work, AUCD and the Training Directors Council are pleased to host the Electronic Tool Kit of pre-service curricular materials, directed to the needs of patients with disabilities, for use by medical, nursing and dental schools. Whenever possible, we have indicated where effectiveness studies have been conducted for each tool.
This tool kit has direct links, whenever possible, to web-based materials, and contact information for obtaining materials available in other formats (e.g., DVDs, etc.). The five topical areas are by intended audiences:
- Medical students/residents
- Dental students
- Nursing students
- Interdisciplinary (applicable across two or more of the above disciplines)
- Other (general knowledge about developmental disabilities, family-centered care, etc.)
Association of University Centers on Disabilities (AUCD)
The Architectural and Transportation Barriers Compliance Board (Access Board) is proposing accessibility standards for medical diagnostic equipment. The proposed standards contain minimum technical criteria to ensure that medical diagnostic equipment, including examination tables, examination chairs, weight scales, mammography equipment, and other imaging equipment used by health care providers for diagnostic purposes are accessible to and usable by individuals with disabilities. The standards will allow independent entry to, use of, and exit from the equipment by individuals with disabilities to the maximum extent possible.
The Architectural and Transportation Barriers Compliance Board (Access Board)
Developmental disabilities such as autism, cerebral palsy, Down syndrome, and other cognitive disabilities create challenges in accomplishing daily activities, especially self-care activities. People with these disabilities may need extra help to achieve and maintain good health, which includes oral health. To achieve and maintain good oral health, people with mild or moderate developmental disabilities often require a special approach to dental care. This resource provides the newest research on developmental disabilities and oral health and information on finding a dental care provider.