- Accommodating Students with Disabilities Training to be Health Providers
- Health Care
- Access: Communication
- Access: Medical Equipment
- Access: Physical
- Americans with Disabilities Act (ADA)
- Coordination and Working with the Community
- Customer Service
- Education Resources
- Health and Health Care Disparities
- Long Term Care
- Medi-Cal Managed Care for Seniors and People with Disabilities
- Policies, Procedures and Resources
- Who Are People with Disabilities?
- History of Disability and the Health Professions
- Improving and Protecting Your Health
- Profiles of People with Disabilities in the Health Professions
Accommodating Students with Disabilities Training to be Health Providers
Association on Higher Education and Disability (AHEAD) - An international, multicultural organization of professionals committed to full participation in higher education for persons with disabilities. Address the need and concern for upgrading the quality of services and support available to persons with disabilities in higher education.
Health Sciences Faculty Education Project - Tools for faculty to help effectively teach their increasingly diverse student population, particularly students with disabilities. Faculty members playan important role in providing for our country's health care system: To produce highly trained and qualified professionals in each of the health science disciplines. The Health Science Faculty Education Project assists faculty to provide the most effective instruction for each student's unique needs and strengths.
Health, Wellness and Aging with Disability - Information on, and links to, health, wellness and aging with disability, including cerebral palsy, conferences, developmental disabilities, exercise, health information online, managed care, polio, spinal cord injury, and women's issues.
Health Care Stories Videos - These free, downloadable short videos illustrate, as no policy paper can, the obstacles and barriers that still stand in the way of getting appropriate health care for many people with disabilities.
A six-page document that presents questions and answers for healthcare providers about auxiliary aids and services such as Sign Language Interpreter services, captioning, and other methods for making aural communication accessible.
- ADA Checklist: Health Care Facilities and Service Providers - Ensuring Access to Services and Facilities by Patients Who Are Blind, Deaf-Blind, or Visually Impaired
- A 23-page pamphlet that provides practical, cost effective solutions concerning access to health care services and facilities by patients who are deaf, deaf-blind, or visually impaired.
- Reviews access to written documents; handling of currency; sighted guide technique; and awareness of and sensitivity to the needs of persons who are blind, deaf-blind, or visually impaired.
- Contains accessibility checklists that offer methods of eliminating communications barriers to access to services and facilities.
- Most accommodations listed are not structural in nature and thus will involve minimal cost.
- Advancing Effective Communication, Cultural Competence, and Patient- and Family-Centered Care: A Roadmap for Hospitals. (2010) (last accessed 09.14.10) The Joint Commission. Publication provides recommendations to help hospitals address unique patient needs, meet the new Patient-Centered Communication standards, and comply with existing Joint Commission requirements. Example practices, information on laws and regulations, and links to supplemental information, model policies, and educational tools are also included.
- Communication Access across the Continuum of Healthcare: An Annotated Bibliography on Patient-Provider Communication. (2009) (last accessed 09.14.10) Smith, H. Research and Resource Associate, Central Coast Children’s Foundation, Inc. Heather D. Smith, Central Coast Children’s Foundation, Inc. Patient Provider Communication. Covers:
- Understanding Language and Culture Issues between Patients and Providers;
- Overcoming Language and Cultural Communication Barriers;
- Understanding Communication Barriers between Providers and Communication Vulnerable Patients Not Related to Language or Culture; and
- Overcoming Communication Barriers between Providers and Communication Vulnerable Patients Not Related to Language or Culture.
- Communicating with Your Deaf and Hard-of-Hearing Patients? McGory, R. Premo, B. Kailes, J. 2003, Pharmacy Times, Los Angeles Times: K17-K18.
- CPB/WGBH National Center for Accessible Media (NCAM) - A research and development facility that works to make media accessible to underserved populations such as people with disabilities, minority-language users, and people with low literacy skills.
- Deaf/hard of hearing - Why You Need and How to Get an ASL Interpreter for Doctor's Appointments, last accessed 12.28.12, 3 parts
- Designing Accessible Web Sites (1999) (last accessed 9.13.10) Booklet on creating sites that is accessible to people with disabilities. Topics include:
- How Does a Disabled Person Use the Web?
- Links, Images, Image Links, and Image Maps
- Text Tips, Forms, Frames, Tables, Lists
- Style Sheets
- Audio and Movie Clips
- Sample Sites
- Resources & Legal Questions
- Effective Color Contrast: Designing for People with Partial Sight and Color Deficiencies, (1999) (last accessed 9.14.10). Arditi, Aries, Lighthouse International. Covers principles of designing effective color contrast for people with partial sight or congenital color deficiencies.
- Finding an Interpreter. Registry of Interpreters for the Deaf (last accessed Mar. 24, 2011)
- How to Write Easy-to-Read Health Materials - (last accessed 9.14.10). On-line resource providing tips for writing easy to read medical information materials including step-by-step processes:
- Plan and Research
- Organize and Write
- Evaluate and Improve
- Inform Us and Stay Informed
- Making Text Legible: Designing for People with Partial Sight, (1999). (last accessed 9.13.10) Arditi, Aries, Lighthouse International. Covers maximizing legibility for people with partial sight.
Providing Information in Alternative Formats (2005) (last accessed 9.1.10), Covers:
- Reviews communication needs of people with visual, hearing, learning, and cognitive disabilities, including:
- Who is responsible for producing materials in alternative formats,
- When to provide alternative formats,
- How you plan, produce, and deliver alternate formatted material, and
- Sources (vendors) for the production of alternative formats.
- W3C Web Accessibility Initiative (WAI)- from the consortium that maintains the World Wide Web's standards. Covers website accessibility standards.
- Video: Improving Patient-Provider Communication (2010)
The Joint Commission and the U.S. Department of Health & Human Services (HHS) Office for Civil Rights worked together to support language access in health care organizations with the video Improving Patient-Provider Communication: Joint Commission Standards and Federal Laws. The video highlights what the Joint Commission standards require as well as Federal civil rights laws with respect to patients who are deaf or hard of hearing, or have limited English proficiency. A list of resources and tools that health care organizations can use to build effective language access programs accompany the video.
- “Guidelines for Services to Deaf and HOH (hard-of-hearing) Adults,” Delmarva Foundation for Medical Care, Inc., Gallaudet University, and the Health Care Financing Administration.
- Bonnie L. O’Day, Mary Killeen, and Lisa I. Iezzoni, “Improving Health Care Experiences of Persons Who Are Blind or Have Low Vision: Suggestions from Focus Groups,” American Journal of Medical Quality 19 (2004), p. 193.
Persons who are blind or have low vision face special challenges in obtaining care that is safe, effective, timely, and patient centered. To explore perceptions of care and recommendations for improvements, authors conducted 8 interviews with experts and 2 focus groups with 19 persons, all of whom are blind or have low vision. Interviewees perceived that they confront special barriers to care because of being blind or having low vision. Barriers fell into 4 broad categories: basic respect, including concerns about physicians thinking they cannot participate fully in their own care; communication barriers, including difficulties interacting with physicians and office staff; physical access barriers, including difficulties getting to and around physicians' offices; and information barriers, including receiving written materials in inaccessible formats (eg, not in Braille, large print, or audiotape). Using common courtesy and individualized communication techniques, physicians and office staff could improve health care experiences of blind and low-vision patients.
- Ann Williams, “A Focus Group Study of Accessibility and Related Psychosocial Issues in Diabetes Education for People with Visual Impairment,” The Diabetes Educator 28, no. 6 (2002), pp. 999–1007.
This study provides qualitative support for the view that visually impaired people in the United States may, as a group, be systematically excluded from receiving high quality diabetes care and education. Equal access to diabetes care and education for visually impaired people requires increased accessibility of diabetes care and education programs, and increased professional and public awareness that the diabetes programs are accessible. Some specific recommendations are to make all patient education materials available in low-vision/nonvisual formats and to teach all diabetes education professionals how to work effectively with visually impaired people.
- Exam Room Selection for Accessible Examination Tables & Chairs (2010), Covers:
- The number / percentage of accessible examination rooms with exam tables / chairs,
- Specifications of an accessible exam room;
- Tips in selecting which exam rooms to designate as “accessible.”
- Tips for Weighing Patients Using an Accessible Scale - PDF Word
- Importance of Accessible Examination Tables & Wheelchair Scales (2010) PDF (1.57MB) Word (7.93MB). Covers:
- Reasons why medical offices should have height-adjustable examination, treatment tables and chairs, and accessible weight-scales:
- Improving quality of care for people with disabilities and activity limitations,
- Preventing and reducing health care professionals’ workplace injuries,
- Avoiding costly legal problems,
- Taking advantage of tax incentives, and
- Features of accessible examination tables, chairs, and weight-scales
- Locating manufacturers.
- Reasons why medical offices should have height-adjustable examination, treatment tables and chairs, and accessible weight-scales:
- Access to Medical Care for Individuals with Mobility Disabilities (May 2010), (last accessed 9.14.10) U.S. Department of Justice, Civil Rights Division, Disability Rights Section. Provides guidance for medical care professionals on the ADA’s requirement to provide accessible health care to individuals with mobility disabilities and includes an overview of general ADA requirements, commonly asked questions, and illustrated examples of accessible facilities, examination rooms, and medical equipment.
Review of Legal Research on Accessible Medical Equipment. (2005) (last accessed 9.14.10), Covers:
Complaints to the United States Department of Justice (DOJ) and to the Department of Health & Human Services (DHHS);
- Private lawsuits regarding medical malpractice due to in-accessible medical equipment; and
- Private lawsuits regarding workplace injuries to nurses caused by lifting and/or transferring patients with disabilities.
- Importance of Accessible Mammography Equipment (2009) Covers discussion and illustrations:
- Reasons why medical facilities should have height-adjustable / wheelchair accessible mammography equipment;
- Accessible and inaccessible features of mammography equipment; and
- Accessories to improve access.
- Suggested Intake Questions On Special Needs When Scheduling A Mammography Appointment (2009), American Association on Health & Disability, Rockville, Maryland
A short text document that provides suggested questions and information concerning accommodations women with disabilities might require when scheduling a mammography appointment. Giving the caller the opportunity to alert staff to her specific needs prior to her appointment will help her feel less anxious and more welcomed by the facility.
- Choosing and Negotiating an Accessible Facility Location (2008), (last accessed 9.14.10) Covers:
- Responsibilities of tenants in complying with the ADA when negotiating a lease,
- Why barrier removal is a continuing obligation, Items to consider in choosing new medical office space.
- Health Care (clinic/outpatient) Facilities Access (2008), (last accessed 9.14.10), Covers the basics of physical access for clinicians and medical office staff, provides links and listing including:
- Removing common barriers,
- Resources for facility surveys,
- Accessible office fixtures and hardware.
- Improving Accessibility with Limited Resources (2008), (last accessed 9.14.10), Covers:
- Barrier removal as a continuing obligation, and
- Ideas, illustrations and examples of low-cost barrier removal:
- Installing portable ramps for access to buildings,
- Lever door handles,
- Clear 32” path-of-travel,
- Repositioning a soap and/or paper towel dispenser to be in reach range.
- Checklist for Readily Achievable Barrier Removal (1995) - (last accessed 9.13.10) Easy-to-use survey tool helps users to identify barriers in their facilities. The completed checklists and work sheets are the kind of documentation that organizations should keep on file to demonstrate that they are making a good faith effort to comply with the requirements of the ADA.
- ADA Information Line
- Americans with Disabilities Act (ADA) Questions and Answers for Health Care Providers
- Federal Legal Responsibility for Insuring Managed Care Accessibility
- Defining Programmatic Access to Healthcare for People with Disabilities
- Tax Incentives For Improving Accessibility (2004)
- Allowable deductions for expenses for making a facility or public transportation vehicle more accessible and usable by people with disabilities
- Links to federal tax credit guidelines and forms
- Tax Incentives for Small Businesses Including Health Care Providers (last accessed 9.14.10), 6 pages. Covers:
(last accessed 9.14.10), provides information and free publications on the requirements of the ADA including the ADA Standards for Accessible Design. 800-514-0301 (voice) 800-514-0383 (TTY)
A seven-page resource document that presents information on how the ADA applies to health care providers and steps they must take to ensure that people with disabilities receive appropriate and effective care.
A web-based chart that illustrates the responsibility of states, health plans, and health care providers for implementation of the Americans with Disabilities Act.
A four-page, web-based document that defines the concept of programmatic accessibility (e.g., providing ASL interpreters, print materials in alternative formats, modifying the length of office visits) and outlines how medical practice procedures can be organized to provide programmatic access to healthcare for people with disabilities.
A web based resource that explains how small businesses, including healthcare providers can take advantage of two Federal tax incentives available and help cover costs of making access improvements and providing accommodations such as Sign Language Interpreters for customers/patients with disabilities.
The "Disabled Access Tax Credit" (Title 26, Internal Revenue Code, Section 44), is a tax credit for access expenditures that are incurred in order to comply with the ADA. This enables an eligible small business to elect a nonrefundable tax credit equal to half of the expenditures for eligible accommodations that are above $250. The maximum credit a business can elect for any tax year is $5,000 for eligible expenditures of $10,250 or more.
Similar to the federal tax credit, except that under California law, allowable expenditures cannot exceed $250, unlike federal law, which has a maximum of $10,250.
(See Access section for more information related to the ADA and architectural and communication accessibility, and information about accessible medical equipment.)
- California’s State Plan for Alzheimer’s Disease, 2011-2021 Action Plan (last accessed Mar. 24, 2011).
- Case Management in Long Term Care Integration: An Overview of Current Programs and Evaluations (2001). (last accessed 9.13.10) California Center for Long-Term Care Integration, November, 2001, 94 p. Andrew E. Scharlach, Ph.D., Nancy Giunta, M.A., and Kelly Mills -Dick, M.S.W., University of California, Berkeley, Center for the Advanced Study of Aging Services, 120 Haviland Hall #7400, Berkeley, CA 94720-7400, (510) 642-3285. The purpose of this paper is to provide a framework for California state and counties engaged in long-term care integration work (Assembly Bill 1040, 1995). Emphasizing a spectrum from "care coordination" for persons who are least vulnerable yet need supportive services to "case management" for those who are most vulnerable and need significant types of intensive services, the authors review:
- Definitions of case management (what?)
- Principles and values of case management
- Goals of case management by stakeholder group (why?)
- Client / consumer settings and populations (where and to whom?)
- Roles and tasks of case managers (how?)
- Program design criteria for counties beginning long-term care integration work
- Models of case management within long-term care
- Variations in the three models of case management
- Quality in long-term care case management
- Current, ongoing evaluations of case management
- Issues for ensuring quality
- Coordination of Care for Persons with Disabilities Enrolled in Medicaid Managed Care: A Conceptual Framework to Guide the Development of Measures (2000) (last accessed 9.13.10), US Department of Health and Human Services, Assistant Secretary for Planning and Evaluation, Office of Disability, Aging and Long Term Care Policy, December, 2000, 33 p.Shoshanna Sofaer, Dr.P.H., Barbara Kreling, Martha Carmel M.S.P.H., of Baruch School of Public Affairs.
The purpose of this grant-funded report is to develop measures of care coordination which are both feasible and meaningful in assessing the performance of Medicaid-funded managed care organizations serving people with disabilities. The conceptual framework developed here clarifies the meaning of "care coordination" using an extensive review of literature and interviews with experts in health care systems' measurements, clinicians, and people who have studied related fields. Questions answered:
- Whose care needs to be coordinated?
- What are potential "inclusion" and "exclusion" criteria for care coordination?
- What is the relationship of care coordination to other concepts?
- What long-term and intermediate outcomes can be achieved by measuring and improving care coordination?
- What processes and activities are included in care coordination?
- What organization/structure factors appear critical to effective and efficient care coordination; are necessary to support consistent and high quality care coordination, and desired intermediate outcomes?
- Effectively Including People with Disabilities in Policy and Advisory Groups (Edition 2, 2012)
PDF MS Word
Provides how-to information for effectively including people with disabilities in policy and advisory boards, councils or work groups; contains material on developing and sustaining an advisory group; discusses why to include people with disabilities; and how to identify qualified people with disabilities. Includes a planning checklist that covers defining purpose, structure, size, lines of communication, membership, recruiting, budgeting, staffing, minutes, accountability, meeting access and accommodations; a planning recruiting matrix; and an agenda and minutes template.
- Financing Health Care for Women with Disabilities - RAND White Paper, 2003, 9 p. Prepared by Janice Blanchard & Susan Hosek for the FISA Foundation
FISA Foundation (Pittsburgh, PA) commissioned RAND to assess what is known about the key financial issues affecting access to appropriate primary health care for women with disabilities and to recommend strategies for effectively addressing these issues. Using literature review and interviews with women who have disabilities, policymakers, physicians, insurers, and representatives from coordinated care plans, the authors make recommendations for national, state, and local policymakers seeking to eliminate health disparities and improve the quality of care for women with disabilities. Includes:
- Executive summary of nine pages
- Description of women with disabilities and their health care needs
- Non-financial barriers to health care
- How delivery of health care for women with disabilities is provided and covered
- Financial barriers to health care
- Policy recommendations
- Future research needs
- How to Establish a Disability Collaborative, Inland Empire Health Plan (2010)
Etiquette Tips for Interacting with People with Disabilities
- Allergies PDF (146KB), Word (88KB)
- Cognitive PDF (83KB), Word (61KB)
- General PDF (749KB), Word (729KB)
- Hearing PDF (102KB), Word (64K)
- Physical PDF (98KB), Word (64KB)
- Speech PDF (97KB), Word (62 KB)
- Visual PDF (117KB), Word (74KB)
- Language Tips - Preferred Terms regarding People with Disabilities. © Excerpted with permission from “Language is More Than a Trivial Concern,” Edition 10, By June Isaacson Kailes, 2010, KAILES-Publications, email@example.com
- Language is More Than a Trivial Concern (27 pages) pdf Word (1.1 MB)
Sensitizes people to appropriate terminology to use when speaking with, writing about or referring to people with disabilities. Challenges readers to be aware of the importance of using disability-neutral terms. Details preferred language and gives reasons for the disability community's preferences. Serves as an excellent reference tool for the public, media, marketers, providers and for board members, staff and volunteers of disability-related organizations. Includes a language quiz and many examples.
- Tips for Interacting with People with Disabilities (26 pages) pdf Word
A more complete version of “Etiquette Tips for Interacting with People with Disabilities.” Includes a quiz to check your awareness of preferred practices as you meet people who have disabilities, and sections on: who are people with disabilities and other activity limitations, there are no “the disabled” and there is no “one size fits all,” and defining disability broadly.
- Readiness Checklists for Providing Health Care for People with Disabilities: attitudes, physical access, communication, accessible medical equipment and policies, procedures and process (coming soon)
- What is the difference between a person who is “deaf,” “Deaf,” or “hard of hearing”? (last accessed 9.9.10), National Association of the Deaf. This article discusses the diversity of the deaf and hard of hearing community, including: variations in the cause and degree of hearing loss, age of onset, educational background, communication methods, how individuals feel about their hearing loss, and connection to the larger society.
- Information Brief:Health Care: Guardianships, Conservatorships, and Alternatives (2010). John Shea, Ph.D.
- Preservice Health Training (PHT) Modules
Human Development Institute, University of Kentucky
The web-based Preservice Health Training (PHT) Modules were designed to improve students' and practicing clinicians' comfort level and knowledge related to working with patients who have developmental disabilities. A total of seven modules have been developed in the series, including two medical modules, two nurse practitioner/physician assistant modules, two dental modules, and one interdisciplinary women’s health module. The modules were produced in response to the continuing disparity in access to quality healthcare experienced by this patient population. As students work through each case, they make decisions about how to conduct the examination, as well as answer specific questions related to developing a treatment plan.
- Reproductive Health Care for Women with Disabilities
American Congress of Obstetricians and Gynecologists, Washington, DC
This Internet-based recorded slide program assists women's health care clinicians with office skills to assist with their care of women with physical, developmental or sensory disabilities and includes specific information for reproductive health care.
The updated program includes specific information about accommodating patients with physical, sensory, and intellectual and developmental disabilities; disability culture; ADA requirements and incentives; disability facts; and access and office solutions. The programs also provides a clinical overview of a wide variety of issues related to the care of women with disabilities such as the GYN exam, aging and osteoporosis, contraception, pregnancy and parenting, and menopause. It also provides extensive resources on topics including Federal and national resources, sexuality, women’s health examination, breast health, contraception, advocacy and etiquette, and ADA and barrier removal.
- Training Curriculum for Medical Professionals on Improving the Quality of Care for People with Disabilities (2005). World Institute on Disability.
Curriculum and video offers health care providers an introduction to issues affecting the quality of care for patients with mobility, vision, hearing and communication disabilities. It does not address people with cognitive or intellectual disabilities. Curriculum materials offer a case-based training exercises to put knowledge into practice.
Approaches to Training Healthcare Providers on Working with Patients with Disabilities
Last accessed 11.4.12
Webinar co-sponsored by AUCD's Health and Disability Special Interest Group (SIG) and the Alliance for Disability in Health Care Education. 10/12
- Describes approaches to "making the case" for training providers
- Discusses methods of designing training programs for providers
- Discusses steps for implementing provider trainings at various institutions (medical schools, medical societies, etc.)
- Describes elements of successful training programs
Susan M. Havercamp, PhD, The Ohio State University Nisonger Center, UCEDD
Kenneth Robey, PhD, Matheny Institute for Research in Developmental Disabilities, Alliance for Disability in Health Care Education, Inc., UMDNJ-New Jersey Medical School
Suzanne C. Smeltzer, RN, EdD, FAAN, Center for Nursing Research, Villanova University College of Nursing
"A Training Program for Medical Professionals about Improving the Quality of Care for People with Disability and Chronic Illness" (Resource Paper) - Developed by the World Institute on Disability & Center for Health Care Strategies, Kaiser Permanente Foundation, & California Healthcare Foundation, March, 2005, 20 p.
Manual accompanying a training program for medical professionals, including training goals, suggestions for trainers about disability issues, a workshop facilitator's guide with training format options, and a 22 minute video "Access to Medical Care: Adults with Physical Disabilities." The training program uses the video to prompt discussion, engage in case studies, facilitate small group exercises, explain on-line resources, and an evaluation of the training by those who take it. Formats are designed for one, two or three hour workshops. Excellent outline for a brief exposure to disability issues in health care.
The Barrier Free Healthcare Initiative (TBFHI) is spearheaded by advocates, non-profit organizations, legal service providers, and lawyers whose goal is to eliminate the physical and programmatic barriers that people with disabilities face in obtaining healthcare. BFHI aims to develop and support legal advocacy and policy initiatives designed to eliminate these barriers in hospitals and other settings where medical care is provided. Last accessed 12.28.12
- Providing Primary Health Care for People with Physical Disabilities: A Survey of California Physicians, 2002. (Last accessed 9.14.10). Focuses on the scope of California primary care physician's knowledge, attitude, and behaviors regarding physical disabilities and the extent of physician training in disability-related primary care.
- Office on Disability and Office on Women’s Health, Breaking Down Barriers to Health Care for Women with Disabilities: A White Paper from a National Summit (Washington, DC: Department of Health and Human Services, 2004).
The summit explored ways in which health care professionals and health care facilities can overcome barriers to the best possible care for women with disabilities. It featured promising effective programs and new paradigms for approaching the health of women with disabilities that have helped improve access and, ultimately, quality of care including projects that focus on educating health care professionals.
- Kristina Hanson, Tricia Neuman, and Molly Voris, “Understanding the Health-Care Needs and Experiences of People with Disabilities, Findings from a 2003 Survey,” Henry J. Kaiser Family Foundation.
In a national telephone survey of 1,505 non–elderly adults with permanent physical and or mental disabilities, this study identified the healthcare experiences of non–elderly adults across a broad array of disability types and sources of health insurance.
- Mari-Lynn Drainoni et al., “Cross-Disability Experiences of Barriers of Health-Care Access,” Journal of Disability Policy Studies 17, no. 2 (2006).
This article presents the results of a series of focus groups with people with disabilities, in which researchers took a cross-disability, lifespan perspective of disability. Consumers were asked about a broad set of barriers, such as problems with communication, transportation, and insurance, as well as about barriers related to physical accessibility. Authors used the Institute of Medicine's framework to categorize barriers as either structural, financial, or personal/cultural. Results suggest that individuals with disabilities experience multiple barriers to obtaining health care and that these barriers are more pronounced for some types of health care than others. In addition, regardless of disability type, consumers consistently spoke about similar barriers. The results underscore the importance of taking a broad perspective when making policy decisions and the need for continued change and improvement in this area.
- C. A. Schoenborn and K. Heyman, “Health Disparities Among Adults with Hearing Loss in the United States, 2000–2006,” National Center for Health Statistics.
In 2006, 37 million adults in the United States had trouble hearing (ranging from a little trouble to being deaf), representing a substantial increase since 2000 when 31.5 million U.S. adults reported trouble hearing. Self-reported trouble hearing is a measure of hearing loss that is defined as "the total or partial inability to hear sound in one or both ears." The National Healthy People Objectives for 2010 include goals to reduce prevalence of hearing loss as well as goals to eliminate health disparities among persons with disabilities. Accommodations are needed for adults who do not hear well to ensure equal access to health services. Services mandated by the Americans with Disabilities Act have improved access for this group of Americans, but disparities in access to health care and health information remain. The goal of this report is to highlight disparities in health status and health risk behaviors of interest to the health community working to meet the needs of adults with hearing loss. Based on a nationally representative sample of U.S. adults, this report describes selected sociodemographic characteristics, health status and conditions, and health risk behavior characteristics of adults who were deaf or had a lot of trouble hearing and adults who had a little trouble hearing compared with adults with good hearing.
- Public Health Service, “Health Disparities and Mental Retardation: Programs and Creative Strategies to Close the Gap,” Closing the Gap: A National Blueprint for Improving the Health of Individuals with Mental Retardation: Report of the Surgeon General’s Conference on Health Disparities and Mental Retardation (Washington, DC: Public Health Service, 2001), Appendix D-1
This report presents a national Blueprint to improve the health of persons with intellectual and developmental disabilities (IDD) (formerly known as mental retardation). The Blueprint identifies problems and solutions proposed by the community of people with IDD and those who care about their health. It consists of multiple action steps that were developed by work groups at the Surgeon General's National Conference on Health Disparities and Mental Retardation, December 5-6, 2001, in Washington, DC. The action steps are organized under six broad goals that emerged from Conference discussions and analysis of work group recommendations.
- Michele Capella-McDonnall, “The Need for Health Promotion for Adults Who Are Visually Impaired,” Journal of Visual Impairment and Blindness 101, no. 3 (March 2007).
Health promotion interventions for adults who are visually impaired have received little attention. This article reports what is currently known about the health, overweight and obesity, and levels of physical activity reported by these adults. Conclusions about the need for health promotion activities based on this information are provided, and suggestions for implementing these activities or interventions are offered.
- Gloria L. Krahn, Laura Hammond, and Anne Turner, “A Cascade of Disparities: Health and Health Care Access for People with Intellectual Disabilities,” Mental Retardation and Developmental Disabilities Research Reviews 12, no. 1 (2006), pp. 70–82.
This article presents recent conceptualizations that begin to disentangle health from disability, summarizes the literature from 1999 to 2005 in terms of the cascade of disparities, reviews intervention issues and promising practices, and provides recommendations for future action and research. The reconceptualization of health and disability examines health disparity in terms of the determinants of health (genetic, social circumstances, environment, individual behaviors, health care access) and types of health conditions (associated, comorbid, secondary). The literature is summarized in terms of a cascade of disparities experienced by people with ID, including a higher prevalence of adverse conditions, inadequate attention to care needs, inadequate focus on health promotion, and inadequate access to quality health care services.
- Ellen P. McCarthy, Long H. Ngo, Richard G. Roetzheim, Thomas N. Chirikos, Donglin Li, Reed E. Drews, and Lisa I. Iezzoni, “Disparities in Breast Cancer Treatment and Survival for Women with Disabilities,” Annals of Internal Medicine 145, no. 9 (2006): 637-645.
Researchers used 2 large government databases to identify women who were receiving disability benefits when localized breast cancer was diagnosed. They then compared women with disabilities who received mastectomy and breast-conserving surgery with those without disabilities who underwent these surgeries. They also compared the women's survival from the time of diagnosis on the basis of disability and type of treatment. Women with disabilities were less likely than those without disabilities to be treated with breast-conserving surgery. Women with disabilities also did not survive as long after breast cancer was diagnosed. The shorter survival was not explained by the difference in treatment.
- Susan L. Parish and Jungwon Huh, “Health Care for Women with Disabilities: Population-Based Evidence of Disparities,” Health and Social Work 32, no. 1 (2006).
This study examined the health care of a national sample of 8,721 disabled and 45,522 non–disabled women living in the United States. Findings indicate that despite having similar potential access to healthcare, women with disabilities experience worse health care and worse preventive care than non–disabled women.
Long Term Care
"Health Care Organization and Incentives Under Emerging Models of Elderly Health Care" - Dept. of Health Administration and Policy [no date], 10 p. David R. Graber, Ph.D., M.P.H. and Anne Osborne Kilpatrick, D.P.A. Medical University of South Carolina, 171 Ashley Ave., Charleston, SC 29425
Brief article describing existing models of elderly health care that receive capitated payments, including:
- Social HMOs (health maintenance organizations),
- TEFRA (Tax Equity and Fiscal Responsibility Act) or risk-contract HMOs, and
- PACE (Program for All-Inclusive Care for the Elderly) programs.
The potential significance of these programs for providing financial incentives, comprehensiveness of health care, volume of institutional services, and primary care orientation is analyzed. The three programs are compared with each other in terms of organizational issues, health care issues, and financial systems. A two-page reference list is included at the article's end.
"The Olmstead Decision and Long-Term Care in California: Lessons on Services, Access, and Costs from Colorado, Washington, and Wisconsin" - California Health Care Foundation, December, 2003, 46 p.
Eliot Z. Fishman, Ph.D., Bruce C. Vladeck, Ph.D., Ann-Gel S. Palermo, M.P.H., and Margaret H. Davis, M.H.S.
In response to the 1999 Supreme Court decision in Olmstead v. L.C., this comprehensive report details positive programs in California which support the court's findings and goes into more depth about the glaring problems in the state. These problems are:
- Lack of intensive community services and residential options for frail elders and people with serious physical disabilities;
- Lack of intensive outpatient and community mental illness treatments;
- Lack of a substantial housing component to disabilities services; and
- A fragmented state administrative structure.
Ultimately the authors recommend that the state could address these problems by redirecting resources currently spent on institutional care or by drawing federal Medicaid funds more effectively. The narrative includes information about Olmstead, the policy context in California, descriptions of programs for various disability groups; comparison of California's program to similar ones in Colorado, Washington, and Wisconsin. Includes helpful graphs, charts, appendices, and endnotes. Recommendations for policy-makers and advocates are written in detail.
"Understanding Medi-Cal: Long-Term Care" - Medi-Cal Policy Institute, Lucy Streett, M.P.H., September, 2001, 35 p.
This guide presents information about Medi-Cal's long-term care programs. Statistical data - annual unduplicated counts (or average monthly estimates) of participants in California's complex system - are included. Well laid-out with graphs, charts and pictures, the guide answers the following questions:
- What is Medi-Cal?
- What is long-term care?
- Who needs long-term care?
- Who is eligible for Medi-Cal long-term care?
- How is long-term care funded and administered?
- Which services are covered by Medi-Cal?
- What are the policy issues that lie ahead?
Especially helpful are the on-line resources and glossary of words used at the end of the guide.
Medi-Cal Managed Care for Seniors and People with Disabilities
"Adults with Disabilities in Medi-Cal Managed Care: Conference Summary" - Medi-Cal Policy Institute, June, 2003, 20 p. Prepared by Health Systems Research, Inc.
This is a summary of conference proceedings based on discussions in February, 2003. The purpose of the conference was to discuss the possibility of moving more people with disabilities into the California managed care system. Findings from the Medi-Cal Policy Institute were shared and discussed. Participants included policymakers, program administrators, health plan representatives, provider organization representatives, consumer advocates, and researchers. Topics covered in the conference summary:
- the policy context: Medi-Cal managed care for people with disabilities
- opportunities and challenges associated with the implementation of mandatory managed care
- lessons learned from other states
- suggestions and looking ahead
Appendices included the publications shared and mentioned above, agenda for the conference, and list of participants.
"Faces of Medicaid" - Kaiser Commission on Medicaid and the Uninsured, April, 2004, 12 p.
Pictorial descriptions of various recipients of federal Medicaid-funded programs and health services, this brochure puts a human face on what it means to be a Medicaid beneficiary. Three primary groups, with examples from different states across the U.S., are:
- low-income families
- people with disabilities
- elderly individuals
Helpful handout to introduce Medicaid program to general public.
"It Takes More than Ramps to Solve the Crisis of Health Care for People with Disabilities" - Rehabilitation Institute of Chicago, September, 2004, 76 p. Judy Panko Reis, M.A., M.S., Mary Lou Breslin, M.A., Lisa I. Iezzoni, M.D., M.Sc., and Kristi L. Kirschner, M.D.
Attempting to challenge the general health care system of the U.S., this study provides information, resources and recommendations for integrating people with disabilities into our health care systems. Topics include:
- defining disability, populations, access issues, scope and nature of quality of care issues, and the need for fundamental restructuring
- disability civil rights laws and health care, including the ADA
- the role of the Joint Commission on Accreditation of Healthcare Organizations (JCAHO) and the Commission on Accreditation of Rehabilitation Facilities (CARF)
- embracing the ADA as a model for culturally competent, patient-centered care
- recommendations for each stakeholder group in the health care system
- descriptions of promising programs and best practices
Resource information is included in the appendices, along with examples of accessible examination tables, mammography projects, clinical services for women with disabilities, research and training centers, clinics, legal and advocacy services, and references. Tables include population by age, gender, and disability, race and disability, and instances of discrimination. Excellent publication for all involved in health care policy-making and decision-making.
"Making Tough Choices: Adults with Disabilities Prioritize their Medi-Cal Options" - California Healthcare Foundation, December, 2004, 38 p. Marjorie Ginsburg and Kathy Glasmire, Sacramento Healthcare Decisions, Inc.
Using a computerized tool and interactive group process called CHAT (Choosing Healthplans All Together), 12 separate groups in urban, suburban and rural settings designed their Medi-Cal benefits by making choices from 14 categories of service. Participants (131 total) were given a limited budget and had to prioritize services most vital. This paper is a full report of the process, the types of participants and their disabilities, and its findings:
- adults with disabilities are often highly dependent on medical and supportive services
- most important to them is maintaining a full range of Medi-Cal services
- also essential are sufficient choices and availability of providers; choice of physicians is especially important
- three categories needed greater coverage: doctor care, dental care, and equipment
- to maintain a full range of services, CHAT participants most often limited the scope of drugs (brand), enrollment (eligibility), and personal care to reduce costs.
- pleased with the opportunity to voice their opinions, 78% of CHAT participants thought that the process was a good way for others to understand views and priorities of those using Medi-Cal services.
"Medi-Cal Beneficiaries with Disabilities: Comparing Managed Care with Fee-for-Service Systems" - California HealthCare Foundation Issue Brief, August, 2005, 12 p. Lisa Chimento, Moira Forbes, and Any Sander, The Lewin Group; June Isaacson Kailes, Brenda Premo, and Curtis Richards, The Center for Disability Issues and Health Professions, Western University for the Health Sciences; and Chris Perrone, California HealthCare Foundation
Brief paper synthesizes recent research about the experiences of non-elderly beneficiaries with disabilities in managed care and fee-for-service systems in California and other states. The purpose of this review is to help policymakers understand and evaluate options for changing service and payment systems under Medi-Cal. Key findings:
- data determining how people with disabilities will fare in Medicaid managed care is limited; in California, among other states, assessing quality of care has been poor
- a recent national study found that there was no significant difference between Medicaid beneficiaries in managed care and those in fee-for-service on most measures of access and quality
- California managed care enrollees have fewer preventable hospitalization than fee-for-service user; however, users of both systems have trouble finding physicians, communicating effectively with providers and with physical access
- Californians who have experienced mandatory managed care through Medi-Cal have had difficulties during the transition period, with both counties and health plans
- several options for increasing managed care participation do not rely on mandatory enrollment.
Makes recommendations to strengthen the Medi-Cal program's performance, measurements, public reporting, reimbursement systems, and coordination across programs.
Tables and graphs enhance the narrative.
"Serving Persons with Disabilities in Medicare Managed Care: Assuring Continuity Quality and Cost Effectiveness" - Technical Assistance Conference of the Health Resources and Services Administration and Centers for Medicare and Medicaid Services, April 17, 2002, 22 p.
Highlights of proceedings of a national conference on Medicaid funded managed care programs for people with disabilities held in Los Angeles. Most speakers listed are representatives of health care plans and medical institutions. Topics covered:
- a plenary session on national trends and issues facing the disabled population in managed care (Art Pelberg, M.D., M.P.A., Schaller-Anderson, Inc., Phoenix, AZ)
- panel discussion about creating health care teams for people with disabilities
- panel discussion on rate setting and data collection
- plenary session on the role of families of people with disabilities
- plenary session on improving care through better communication
- panel discussion to develop a network of providers with relevant experience
The goal of this conference was to learn how to provide quality, comprehensive services to people with disabilities in a Medicaid managed care environment. Appendices of handouts and slides are included.
"Understanding the Health Care Needs of People with Disabilities: Findings from a 2003 Survey" - Kaiser Family Foundation, December, 2003, 27 p. Kristina Hanson, Tricia Neuman, and Molly Voris
This report details the results of a national telephone survey of 1,505 non-elderly adults (18-64) with permanent physical and/or mental disabilities, including a detailed description of survey methods and results. The goal was to describe health care experiences across a broad array of disability types and sources of health insurance, specifically those receiving SSI or SSDI income and those not receiving payment from either of those two programs. Key findings were that people with disabilities are at "significant socio-economic and health-related disadvantages when compared to the non-elderly U.S. population as a whole." Numerous tables and graphs detail the numeric findings of this large survey. Conclusions and policy implications included recommendations for both improved health care systems and strengthened funding coverage for those without insurance or who are under-insured.
"Adults with Disabilities in Medi-Cal Managed Care: Health Plan Practices and Perspectives" - Medi-Cal Policy Institute, prepared by Jackie Rudich Nolan, September, 2003, 34 p.
Written for California policymakers and other stakeholders to provide insights and information relevant to expansion of managed care programs for non-elderly Medi-Cal beneficiaries with disabilities in response to budget deficits in the state. It is based on a survey of health plans currently providing managed care services to members with disabilities in Medi-Cal. Findings include:
- significant variation by both plan and Medi-Cal managed care models in experiences, scope, and practice of serving members with disabilities
- most health plans do not routinely track or report data specific to members with disabilities
- most plans interviewed are committed to and interested in serving this population
- health plans acknowledge both known and unknown challenges in serving members with disabilities and "special needs"
- promising practices were identified that underscore the value of managed care for this population
Discussed are barriers and challenges; promising practices; and favorable conclusions about using managed care for people with disabilities.
"Adults with Disabilities in Medi-Cal Managed Care: Lessons from Other States" - Medi-Cal Policy Institute, prepared by Center for Health Care Strategies, September, 2003, 48 p. Nikki Highsmith, M.P.A., and Stephen Somers, Ph.D.
Examines how well managed care programs for people with chronic illnesses and disabilities served people in other states: Massachusetts, New Jersey, Oregon and Pennsylvania. Interviews were conducted with senior state Medicaid officials, health plan executives, and leaders from consumer organizations. Also mentioned in the report are the experiences of other states the authors knew had developed programs in this area. Key findings are:
- building a comprehensive and responsive model of managed care takes time but offers greater opportunities for coordination and can assist people with disabilities despite the complexity and heterogeneity of their conditions
- states can maximize consumer choice in the enrollment process by systematically engaging disability organizations, consumers, and family members
- short-term savings are difficult to achieve due to high initial utilizations, difficulty in setting accurate capitation rates, and up front administrative costs, yet longer-term savings are achievable through more effective clinical management and care coordination programs. "A high tolerance for deferred gratification with respect to cost savings is critical."
- traditional network adequacy standards offer little guidance for people with disabilities and their care needs; states need to be more flexible to develop network capacity
- effective care coordination goes beyond medical models of case management; successful programs address medical and psycho-social needs, focus on wellness and prevention, managing both covered and uncovered services
- managed care offers greater capacity to measure performance and so quality measures must be modified to reflect the complexity of chronic conditions among people with disabilities.
"The California Working Disabled Program: Lessons Learned, Looking Ahead" - Medi-Cal Policy Institute, California HealthCare Foundation, April, 2003, 83 p. Joanne Jee and Joel Menges, The Lewin Group
Based upon the relatively new "Californians Working Disabled Medi-Cal Buy-In Program (CWD)," this study examines the factors affecting enrollment in the program and to estimate enrollment and cost impacts of potential program changes. Enrollment as of June 2002 was 652 people, far lower than state officials had anticipated. Two analyses were conducted: a quality review of stakeholders' experience with the program; and a gathering (by survey, telephone, teleconference, interview) of the experiences of the CWD enrollees, those eligible but not enrolled, and county eligibility workers to gain insight and suggestions for improvement. Chapters cover:
- introduction and context
- characteristics of existing CWD enrollees
- modeling of alternative policy options
- enrollee, non-enrollee, and eligibility worker feedback
- lessons learned
Themes emerging from this feedback include: increase program outreach to potential users; improve eligibility worker knowledge; improve program attractiveness; and eliminate barriers to employment for people with disabilities. Authors also recommend that:
- raise the income limit to 450% of FPL
- eliminate asset level restrictions
- combination of the two options above.
A two-page, easy-to-use check sheet that patients can complete either independently or with assistance that identify and record accommodations they require in a health care setting. This document can be retained in the patient’s file for ease of reference or added to on-line, digital patient records.
- Accommodating Seniors and People with Disabilities: Model Policies and Procedures for Primary Care Practices
pdf (130KB) Word (71KB)
A 12-page document for primary care practitioners that is designed either to stand alone as a new chapter that can be inserted into a three ring binder or added to a digital file of existing policies and procedures. Suggested policies set forth the basic position of the practice on key issues while procedures describe specific tasks required to implement the policies, including managing the delivery of care, and they also specify who is responsible for accomplishing specific tasks.
- L. I. Iezzoni and V. A. Freedman, “Turning the Disability Tide: the Importance of Definitions,” Journal of the American Medical Association 299(3), (2008), pp. 332–334.
Explores the historic meanings and definitions of disability including those of the Americans with Disabilities Act, the Social Security Administration, and the American Medical Association, and notes that the Institute of Medicine recommends adopting the conceptual framework set forth by the World Health Organization in the International Classification of Impairments, Disabilities, and Handicaps.
- World Health Organization–International Classification of Functioning, Disability and Health–ICF
The International Classification of Functioning, Disability and Health, known more commonly as ICF, is a framework for measuring health and disability at both individual and population levels. The ICF takes into account the social aspects of disability and does not interpret disability only as a “medical” or ”biological” dysfunction.
History of Disability and the Health Professions
- Health Education in American Sign Language http://www.deafmd.org
Provides health related topics to promote the overall wellness of the Deaf community by providing clear and concise health education in American Sign Language. Includes a deaf-friendly doctors' database, health information databse and understanding tests section. Last accessed 12.28.12
Medication Assistance Programs - provides detailed information about each company's assistance program, including the company's name, the program's address, the telephone and fax numbers, guidelines and notes, the health care provider's role, the patient's role, information needed to initiate enrollment, information regarding the amount of medication and how it is dispensed, refill information, the estimated response time, and limitations of the program.
Medwatch - Medical product safety information from the U.S. Government Food and Drug Administration.
The University of Miami's School of Medicine, Louis Calder Memorial Library - Internet Listings for Pharmacology and Toxicology
The Medicine Program - For a $5 processing fee for each medication requested, The Medicine Program site will assist the patient in the enrollment process. Patients without access to the Internet can contact a health care provider or a pharmaceutical company to receive information about medication assistance programs.
U.S. Food and Drug Administration - Center for Drug Evaluation and Research.
U.S. Food and Drug Administration Consumer Information - From the FDA's Center for Drug Evaluation and Research.
Profiles of People with Disabilities in the Health Professions
"Barriers Fall for Disabled Medical Students" - November, 2003 NY Times article about Jeffrey Lawler, 4th year Western University of Health Sciences medical student and other health care providers with disabilities. - Note: this is a PDF file.
Blind Physicians In Current Practice - "There is a common misperception that we have to be all things to all people, and that anyone who falls short of perfection is somehow incomplete." - Dr. Yarnell
Center on Self-Determination Stories of exemplary health science professionals with diverse abilities who are practicing as nurses, doctors, dentists and dental hygienists.
Deaf Professor Creates Web Site to Help Deaf Children Communicate By Bianca P. Floyd
Disability Leads Student To Medical School - Like all medical students, he faces numerous challenges which will put all his abilities to the test in coming years. For Jeff, however, there are additional obstacles to overcome.
For doctors with disabilities, overcoming obstacles is part of the job. By Julie G. Madorsky, MD, and Barry Corbet
Margaret Stineman, M.D. by June Isaacson Kailes, Disability Policy Consultant and Susan Madison, consultant.
Michael Ain - "Aiming High," by Melissa Hendricks - John Hopkins Magazine, April 1999 - In the rough and rugged world of orthopedic surgery, Dr. Michael Ain stands out. Ain has a form of dwarfism called achondroplasia.
Thomas E. Strax, M.D., Doctor, Physiatrist, Administrator, Executive Dr. Tom Strax comes from a long line of physicians, including his father and beloved cousin who served as a key mentor throughout his education. With athetoid cerebral palsy, becoming a doctor was not a "piece of cake," but it seems that Tom had many cards stacked in his favor, not the least of which was his singular desire.