Health Promotion Resource Guide
Promoting the Health and Wellness of
People with Disabilities
What is the Purpose of the Resource Guide?
The Health Promotion Resource Guide has been designed to increase inclusion of people with disabilities in health promotion initiatives. It provides health educators, service providers, and program planners a carefully selected collection of resources that address accessibility, communication, and topic specific health promotion. While not designed to be exhaustive, the Health Promotion Resource Guide provides a starting place for locating, using, and adapting health promotion and wellness resources appropriate for people with disabilities.
What is Included in the Resource Guide?
The Health Promotion Resource Guide includes an introductory section on accessibility followed by topic-specific sections which highlight resources that can be integrated into commonly available state and community health promotion initiatives. Many of the resources have been created for the general population or for a target population of individuals with specific disabilities. In most cases, the information that is available on a health promotion topic for the general population is applicable to people with disabilities. Resources designed for a condition- specific population can often be generalized for a larger audience. We strongly encourage readers to review the accessibility section before proceeding to the specific health promotion topics. Unless issues of accessibility (environmental and communication) have been anticipated and addressed, even highly motivated individuals with disabilities may be unable to utilize and fully benefit from health promotion opportunities.
Why is the Resource Guide Important?
• There is a need to increase the awareness of health educators of the importance of health and wellness opportunities for people with disabilities.
• All health promotion programs available in the community and clinical settings for the general population can include or be modified to be inclusive of and responsive to people with disabilities.
• Strategies that promote the participation of people with disabilities also benefit a wide segment of the population including people who are aging or have a chronic disease.
• Public health programs must ensure that health education efforts and services include methods, strategies, and formats that accommodate people with disabilities.
• Health educators need information, support, and training to provide services that are truly accessible to people with disabilities and are comparable to those offered to persons without disabilities.
• Providers can benefit from a greater understanding of the ADA, disability awareness and sensitivity, and the principles of universal design.
Is the Resource Guide for You?
Whether you are working in state health promotion program planning, disability services, or community service delivery, see yourself as a disability specialist or a disability “novice,” you should find the Health Promotion Resource Guide full of useful resources. We hope that as the field of health promotion for people with disabilities expands, there will be an even richer repository of knowledge and resources from which to draw inspiration, ideas, and effective interventions.
Table of Contents
Creating Inclusive Health Promotion Services
Accessibility 1
Communication 7
Health Promotion and Disability
Disability and Healthy Living 15
Physical Activity 23
Nutrition 33
Substance Abuse 42
Women’s Health 50
Violence 59
Sexuality & Relationships 64
Parenting 69
Cancer Screening 72
Safety and Emergency Preparedness 75
Mental Health 80
Aging 83
Transition for Youth with Disabilities 92
Creating Inclusive Health Promotion Programs
Accessibility
Inclusion for all persons is made possible by an environment free of physical, attitudinal, and communication barriers. For people with disabilities, inclusion in health promotion efforts continues to be limited by inaccessible programs and facilities. While the Americans with Disabilities Act (ADA) is a federal law requiring equal access to services for people with disabilities, Universal Design encourages programs and facilities to be responsive to and useable by everyone, regardless of their abilities. Excellent resources related to the ADA and Universal Design exist, providing practical information on making environments and programs accessible. Specific strategies for addressing communication access can be found on pages 11-18.
The Americans with Disabilities Act (ADA)
ADA Technical Assistance Program
This network of regional ADA technical assistance centers, sometimes called Disability Business Technical Assistance Centers (DBTACs), is a comprehensive resource for information, materials, technical assistance, and training on the ADA. These centers are well suited to providing health organizations with assistance in making programs accessible and compliant with ADA. Information is provided regarding topic areas such as ADA information (such as Title I, II, III, IV, and V regulations), technical assistance manuals, videos, and publications in multiple languages. The website and toll free number below provide ADA information, links including an extensive list of publications, and a means to connect to your regional center.
ADA Technical Assistance Program
800-949-4232 (V/TTY)
www.adata.org/dbtac.html
Disability Rights Education and Defense Fund (DREDF)
This center works to protect and advance the civil rights of people with disabilities. It provides litigation, advocacy, technical assistance, and education and training of attorneys, advocates, persons with disabilities, and parents of children with disabilities. DREDF website contains a list of ADA publications, which are general in nature and designed for use in education and training programs (Click on “Publications”).
DREDF
2212 Sixth Street
Berkeley, CA 94710
510-644-2555 (V/TTY)
www.dredf.org
The Access Board
This federal agency, also known as the Architectural Transportation and Barriers Compliance Board, provides technical assistance, training, and research on accessible design. The Access Board develops and disseminates Accessibility Guidelines and Standards, which are minimum guidelines for standards issued under the ADA. The website includes these standards and other publications related to access of facilities, public rights-of-way, transportation, and communication.
The Access Board
1331 F Street, NW, Suite 1000
Washington, DC 20004-111
800-872-2253
800-993-2822 (TTY)
Email: info@access-board.gov
www.access-board.gov
United States Department of Justice
The Disability Rights Section of the Department of Justice (DOJ) carries out the mandates of the ADA through regulatory, mediation, and technical assistance activities. The DOJ provides information to help increase understanding and compliance of the ADA by phone or through their website and the ADA information line. Publications are available on the DOJ website or can be ordered through the ADA Information Line.
United States Department of Justice
950 Pennsylvania Avenue, NW
Washington, DC 20530-0001
Email: AskDOJ@usdoj.gov
www.usdoj.gov/disabilities
ADA Information Line
800-514-0301
800-514-0383 (TDD)
Job Accommodation Network (JAN)
This free consulting service provides information and ways to provide job accommodations for people with disabilities. Many of the accommodations are applicable in a variety of circumstances, including health settings. In addition to online publications, JAN provides a searchable online accommodation resource (SOAR) and a toll-free number for more information.
Job Accommodation Network
800-526-7234 (V/TTY)
www.jan.wvu.edu
North Carolina Office on Disability and Health (NCODH)
NCODH has developed a series of Removing Barriers publications to address strategies for improving accessibility and supporting the concept of Universal Design in health care and other community settings. The series of publications provides guidelines and recommendations on how to improve both the physical environment and communication with people with disabilities. Publications can be downloaded from the website or ordered from the office. Publications in this series include:
• Removing Barriers to Health Care: A Guide for Health Professionals
• Removing Barriers: Tips and Strategies to Promote Accessible Communication
• Removing Barriers to Health Clubs and Fitness Facilities: A Guide for Accommodating All Members, Including People with Disabilities and Older Adults
North Carolina Office on Disability and Health,
FPG Child Development Institute, University of North Carolina at Chapel Hill
Campus Box 8185
Chapel Hill, NC 27599-8185
FAX: 919-966-0862
Email: odhpubs@mail.fpg.unc.edu
www.fpg.unc.edu/~ncodh
Accessibility Resources by June Issacson Kailes
This disability policy consultant has developed and collected resources that promote accessibility of facilities and programs. Her website contains a list and description of publications, in addition to other online resource links. (Click on “ADA” and “Universal Design”). Publications include:
• A Guide to Planning Accessible Meetings
• Accessibility Checklist for Events and Meetings
• Barrier Free Design Can Improve Your Profit in Multiple Ways
• Offering Access to Customers with Disabilities Expands Market Share
June Isaacson Kailes, Disability Policy Consultant
6201 Ocean Front Walk, Suite 2
Playa del Rey, CA 90293-7556
310-821-7080
www.jik.com
Means ADA Compliance Pricing Guide: Cost Data for 75 Essential Projects
This guide contains 75 most commonly needed modifications for ADA Compliance with cost information. For each modification there are illustrations, design requirements, suggestions, and detailed estimates (Click on “Bookstore”).
R.S. Means Company
100 Construction Plaza, Kingston, MA 02364-0800
800-334-3509
www.rsmeans.com
Paralyzed Veterans of America (PVA)
This organization provides numerous educational materials on living with a disability and preventing secondary conditions for individuals with spinal cord injury and other disabilities. In addition to health related topics, this organization provides consumer-focused information on the ADA (Click on “Publications”). Publications include:
• The Americans with Disabilities Act: Your Personal Guide to the Law
• The ADA: Tax Incentives: Assisting Accessibility
PVA
801 18th Street, NW
Washington, DC 20006-3517
800-424-8200
www.pva.org
The Arc of the United States
The Arc of the United States, an organization for people with developmental disabilities, provides numerous educational materials including information on the ADA. Publications can be downloaded from The Arc website. (Click on “Resources”, then “Publications”).
• The ADA Title III – A Guide to Making Your Business Accessible to People with Mental Retardation
• All Kids Count: Child care and the Americans with Disabilities Act (ADA)
• The Americans with Disabilities Act at Work
The Arc of the United States
1010 Wayne Ave., Suite 650
Silver Springs, MD 20910
301-565-3842
www.TheArc.org
National Rehabilitation Hospital
The National Rehabilitation Hospital has several publications that address the obligations of health care facilities under the ADA. Although not available on the website, these publications may be ordered from their office:
• Answers to Questions Most Commonly Asked by Hospitals and Health Care Providers
• Information for Persons with Disabilities: Access to Public and Private Health Care
• Technical Assistance Manual for Hospitals and Health Care Providers
National Rehabilitation Hospital
Center for Health & Disability Research
1016 16th Street, N.W., Suite 400
Washington, DC 20036
202-466-1900
www.nrhchdr.org
National Association of the Deaf (NAD)
This non-profit organization was established to assure the accessibility and civil rights of individuals who are Deaf and hard of hearing. The website contains information on topics such as American Sign Language and the legal rights of people who are Deaf and hard-of-hearing.
NAD
814 Thayer Avenue
Silver Spring, MD 20910-4500
301-587-1788
301-587-1789 (TTY)
Email: NADinfo@nad.org
www.nad.org
American Foundation for the Blind (AFB)
The foundation has materials that address accommodations required by the ADA relating to the specific needs of people who are blind, Deaf-Blind, or have low vision. The website contains information on environmental access, access to information, and access to visual media for individuals with vision loss. (Click on “Information Center”). Publications include:
• Of Consuming Interest: A Guide to Titles II and III of the ADA for People with
Vision Loss
• Self-Evaluation Checklist for Health Care Facilities
AFB
11 Penn Plaza, Suite 300
New York, NY 10001
800-232-5463
www.afb.org
Universal Design
Universal Design is the concept of designing all products and the built environment to be aesthetic and useable to the greatest extent possible by everyone, regardless of their age, ability, or status in life. Employing Universal Design from the onset prevents the need to retrofit environments and in most cases eases confined spaces and makes objects easier to interact with for everyone.
The Center for Universal Design
The Center is a national research, information and technical assistance center that evaluates, develops, and promotes universal design in housing, public and commercial facilities, and related products. It provides publications that address all areas of Universal Design and barrier removal including ADA Standards Tech Sheets, videos, and Tech Packs on issues related to medical facilities, bathrooms, entrances, and parking (Click on “Publications”).
The Center for Universal Design
North Carolina State University, College of Design
Box 8613
Raleigh, NC 27695-8613
800-647-6777
www.design.ncsu.edu/cud
Center for Inclusive Design and Environmental Access
This Center provides technical assistance, education, and information on making homes and facilities more accessible. The website contains “Bright Ideas,” a list of accessibility solutions, and many free online publications (Click on “Publications”).
Center for Inclusive Design and Environmental Access
School of Architecture and Planning
University of Buffalo
Buffalo, NY 14214-3087
716-829-3485
www.ap.buffalo.edu/~idea
Adaptive Environments, Inc.
This non-profit organization promotes accessibility and Universal Design through education, technical assistance, training, consulting, and design advocacy. Publications available on their website include:
• Readily Achievable Checklist: A Survey for Accessibility
• Achieving Physical and Communication Accessibility
• Checklist for Existing Facilities
Adaptive Environments, Inc.
374 Congress Street
Suite 301
Boston, MA 02210
617-695-1225 (V/TTY)
www.adaptiveenvironments.org
Creating Inclusive Health Promotion Programs
Communication
Effective and appropriate methods of communication are essential in providing services to people with disabilities. Sensitive and respectful interaction with people with disabilities is the first step to effective communication. Many people with disabilities also require communication aids because traditional methods of communication, such as speech, telephone, or standard print materials cannot be accessed. The listed resources offer methods and information to assist health promotion programs to communicate effectively with people with disabilities.
General Guidelines for Accessible Communication
Removing Barriers: Tips and Strategies to Promote Accessible Communication
This 40-page booklet by the North Carolina Office on Disability and Health provides information on disability awareness, communication aids and alternate formats, inclusive materials, and media relations. It is available on the NCODH website or in printed format.
North Carolina Office on Disability and Health
FPG Child Development Institute, University of North Carolina at Chapel Hill
Campus Box 8185
Chapel Hill, NC 27599-8185
FAX: 919-966-0862
Email: odhpubs@mail.fpg.unc.edu
www.fpg.unc.edu/~ncodh
IANet Communications Guidelines About Health Care
These guidelines, developed by the Iowa Department of Public Health, contain information on communicating with people who have a range of disabilities, cognitive disorders, hearing impairments, muscle disorders, vision impairments, and information on developing user-friendly websites.
Bureau of Disability and Injury Prevention
Iowa Department of Public Health
Lucas Building
Des Moines, IA 50319-0075
515-281-6646
www.idph.state.ia.us/sa/disprev
Accessibility Guidelines for Speakers
This 18-page guide by June Issacson Kailes offers important tips in assuring communication access to a wide audience including the use of visual aids, sign language interpreters, captioning, assistive listening devices, and providing alternate formats.
June Isaacson Kailes
Disability Policy Consultant
6201 Ocean Front Walk, Suite 2
Playa del Rey, CA 90293-7556
310-821-7080
www.jik.com
New York State Office on Disability and Health
The office provides a series of publications related to interacting and communicating with people with disabilities that are available on the NY State Department of Health website. Publications include:
• People First: Communicating with and about People with Disabilities
• How to Plan Events Everyone Can Attend
• How to Create Effective Health Messages for People with Disabilities.
New York State Office on Disability and Health
New York State Department of Health
Empire State Plaza, 511 Corning Tower
Albany, New York 12237
518-474-2018
www.health.state.ny.us/nysdoh/prevent
Disability Awareness
Interacting with People with Disabilities
This publication presents basic guidelines for interacting with people with different disabilities and is available on the Indiana Governor’s Planning Council for People with Disabilities website.
Indiana Governor’s Planning Council for People with Disabilities
Harrison Building
143 West Market Street, Suite 404
Indianapolis, IN 46204
317-232-7770
www.in.gov/gpcpd/
The Ten Commandments for Etiquette for Communicating with People with Disabilities
This publication, available on the United Cerebral Palsy website, is one of numerous disability awareness publications. The website also contains information on interacting with people with cognitive disabilities, physical disabilities, vision loss, speech impairments, mental illness, or people who may be Deaf or hard of hearing. (Click on “Media & Public Awareness,” then “Etiquette Tips”).
United Cerebral Palsy
1660 L Street, NW, Suite 700
Washington, DC 20036
800-872-5827
www.ucp.org
Communicating with People Who Have a Hearing Loss
This brochure is available from the Alexander Graham Bell Association for the Deaf and Hard of Hearing and can be found on their website. (Click on “Hearing Loss Information”, then “Online Brochure”).
AG Bell
3417 Volta Place, NW
Washington, DC 20007
202-337-5220
202-337-5221 (TTY)
www.agbell.org
Guidelines for Reporting and Writing About People with Disabilities
This booklet contains guidelines on appropriate language usage and portrayal of persons with disabilities and is available from the Research and Training Center on Independent Living.
Research and Training Center on Independent Living
University of Kansas
1000 Sunnyside Ave, Room 4089 Dole
Lawrence, KS 66045-7555
785-864-4095
www.rtcil.org
Telecommunication
Federal Communications Commission
This federal agency ensures that people with disabilities have the same opportunities as everyone else to telecommunicate through the provision of information on communication aids and regulation of telecommunication equipment and services. The FCC website contains information and publications in the following areas:
• Closed Captioning • Telecommunications Relay Services
• Video Description • Hearing Aid Compatibility
• Emergency Access • E911-TTY Compatibility
• State Relay and Equipment Distribution Programs
FCC
445 12th Street SW
Washington, DC 20554
888-225-5322
888-835-5322 (TTY)
www.fcc.gov/cib/dro
The Access Board
As a part of providing technical assistance, training, and research on accessible design, The Access Board develops guidelines on issues relating to communication aids and accommodations as regulated by the ADA and other accessibility laws. Publications include:
• Text Telephones Technical Bulletin
• Using a TTY
• Assistive Listening Systems
The Access Board
1331 F Street, NW, Suite 1000
Washington, DC 20004-111
800-872-2253
800-993-2822 (TTY)
www.access-board.gov
Speech-to-Speech Relay
Newly required by the Federal Communications Commission, Speech-to-Speech Relay (STS) allows those with speech disabilities who are hard to understand on the telephone a new option for communication. The STS new website contains information on STS and a directory of state phone numbers.
www.stsnews.com
Telecommunications for the Deaf, Inc. (TDI)
This organization provides information and activities to increase telecommunications and media access to people who are Deaf, late deafened, hard-of-hearing, and Deaf-Blind. Publications include a national directory of TTY numbers, handbook of suggested etiquette for using a TTY, and guides for using a TTY.
TDI
8630 Fenton Street, Suite 504
Silver Springs, MD 20910-3803
301-589-3786
301-589-3006 (TTY)
www.tdi-online.org
Interpreters for the Deaf or Hard of Hearing
Registry of Interpreters for the Deaf (RID)
RID is a professional organization for interpreters for the Deaf that provides training, certification, and ethical guidelines. Their website contains publications and other information on interpretation.
RID National Office
333 Commerce Street
Alexandria, VA 22314
703-838-0030
703-838-0459 (TTY)
www.rid.org
Effective Communication: Providing a Sign Language Interpreter Under the Americans with Disabilities Act
This publication provided by the Job Accommodation Network outlines the requirements under the ADA and provides answers to common questions about interpreters. The publication is available on the Job Accommodation Network website.
Job Accommodation Network
800-526-7234 (V/TTY)
www.jan.wvu.edu
Alternate Formats
Lighthouse International
This organization provides numerous resources related to vision loss including publications addressing the accessibility of printed materials. (Click on “Publications and Resources,” then “Educational Publications,” then “Promoting Accessibility and Independent Living”). Publications include:
• Making Text Legible: Designing for People with Partial Sight
• Accessible Print and Web Design for the Visually Impaired
• Effective Color Contrast: Designing for People with Partial Sight and Color Deficiencies.
Lighthouse International
111 East 59th Street
New York, NY 10022-1202
800-829-0500
212-821-9713 (TTY)
www.lighthouse.org
American Council of the Blind (ACB)
This membership organization provides information and referral on all aspects of low vision and blindness. Their website contains resources on Braille and other accessible formats. (Click on “Helpful Resources”).
American Council of the Blind
1155 15TH Street, NW, Suite 1004
Washington, DC 20005
800-424-8666
www.acb.org
National Federation of the Blind
This organization provides information and referral on many areas of blindness and low vision including a wide variety of information on Braille. The website lists publications that provide information on using and providing Braille as an alternative format including Braille transcription services.
National Federation of the Blind
1800 Johnson Street
Baltimore, MD 21230
410-659-9314
www.nfb.org
National Braille Association
This organization provides information and education to those who prepare Braille and provides Braille materials to persons who are blind or with low vision. The association also provides Braille transcription services.
National Braille Association
3 Townline Circle
Rochester, NY 14623-2513
585-427-8260
www.nationalbraille.org
Recordings for the Blind and Dyslexic (RFB&D)
This organization is an educational resource for individuals who are unable to read standard print because of a disability and provides audio recordings and electronic versions of textbooks and other educational or reference materials. RFB&D’s Custom Recording Service is a fee-based service that helps businesses, government agencies, and other organizations convert printed materials into accessible formats for employees and consumers.
RFB&D
20 Roszel Road
Princeton, NJ 08540
866-RFBD-585 www.rfbd.org
Website Accessibility
World Wide Web Consortium (W3C)
The W3C Web Accessibility Initiative website contains helpful articles and tools for Internet accessibility. The site is one of the most complete sources of technical assistance on accessible web page design.
Massachusetts Institute of Technology
Laboratory for Computer Science
200 Technology Square
Cambridge, MA 02139
617-253-2613
www.w3.org
National Center for Accessible Media (NCAM)
A Project of the Center for Public Broadcasting and WGBH, the National Center for Accessible Media works to expand access to present and future media. The center provides information on web site accessibility and a downloadable web access symbol.
WGBH
125 Western Ave
Boston, MA 02134
617-300-3400
www.wgbh.org/wgbh/pages/ncam
Bobby
This is an online program developed by the Center for Applied Special Technologies to evaluate the accessibility of web pages. It is considered the minimum standard for accessibility.
Center for Applied Special Technologies
978-531-8555
978-539-3110 (TTY)
www.cast.org/bobby
Trace Center
The Trace Research and Development Center promotes access to telecommunications and information technology. Programs include Rehabilitation Engineering and Research
Centers on Information Technology Access and Telecommunications Access and Universal Design projects.
Trace Research and Development Center
University of Wisconsin-Madison
5901 Research Park Boulevard
Madison, WI 53719-1252
608-262-6966
608-263-5408 (TTY)
http://trace.wisc.edu
Health Promotion and Disability
Disability and Healthy Living
Health resources for people with disabilities traditionally focus on preventing secondary conditions (preventable complications of disability) or on self-care and living with a disability. While these resources are very important and contribute to the health of people with disabilities they can be limited in scope. Recent research and federal efforts to increase the health and wellness of people with disabilities have led to an increase in resources on broader health promotion programming for people with disabilities. The resources provided in this section address this intermix of issues related to disability and a healthy lifestyle. Additional resources on health promotion and disability are included throughout this guide within specific topic areas.
A Good Place to Start…
Centers for Disease Control and Prevention
Division of Human Development and Disability
The Disability and Health Program has led many of the efforts to prevent secondary conditions and promote the health and wellness of people with disabilities through national funding, research, advocacy, and public health leadership. The CDC funds state capacity building projects to address the health promotion needs of people with disabilities. These state projects can be an important resource for identifying existing and future health promotion efforts in a state or region. In addition to state projects, the CDC funds various research projects related to health and health access and three National Information Centers. This Division also leads efforts to include people with disabilities in public health policies and practices, including the integration of disability issues within Healthy People 2010.
National Center for Birth Defects and Developmental Disabilities
4770 Buford Highway MS F-35
Atlanta, Georgia 30341
(770) 488-7080
www.cdc.gov/ncbddd/dh/
Disability and Health Program State Projects
• Arkansas • New Jersey • South Carolina
• California • New Mexico • Vermont
• Iowa • New York • Virginia
• Illinois • North Carolina • Washington
• Massachusetts • Oregon
• Montana • Rhode Island
Links to State Projects can be found at the CDC web site.
National Disability Information Centers
National Center on Physical Activity and Disability
The Center serves as a national clearinghouse to gather, organize, and consolidate existing information and resources on physical activity for people with disabilities, and facilitate dissemination to consumers, practitioners, and disability and service organizations. A more detailed description is found in the physical activity section of this guide.
Website: www.ncpad.org
National Limb Loss Information Center
This Center is the first to provide limb loss information on a national basis to consumers, families, and providers. The Center maintains a large database of literature and referral sources to respond to the needs for information and referral, publications, prosthetic resources, and peer support. Information venues include a magazine for consumers and providers, peer support groups, and a website.
Website: www.amputee-coalition.org/nllic
Christopher & Dana Reeve Paralysis Resource Center
This Center is designed to help improve the quality of life for people with paralysis. The facility houses a staff of information specialists, a library, and a website to provide educational materials, referral services, and self-help guidance to those living with paralysis, their families, and caregivers.
Website: www.paralysis.org
Rehabilitation Research and Training Center on Health and Wellness
This RRTC conducts research and provides training to support and promote the health and wellness of people with long-term disabilities. The website contains information on various topics related to health promotion including healthy lifestyles, recreation and physical activity, managed health care, assistive technology, complementary and alternative medicine, nutrition, and barriers to health care.
Rehabilitation Research and Training Center
Oregon Health and Science University
P.O. Box 574
Portland, OR 97207
503-494-3534
www.healthwellness.org
Living Well with a Disability
This 8-week curriculum was developed by the Rural Institute on Disability to address secondary conditions and health behaviors among people with disabilities. The curriculum is based on the assumption that goal setting and problem solving provide a framework for a healthy lifestyle. The curriculum is structured as a ten-chapter workbook and is designed for implementation in an Independent Living setting with peer interaction.
The University of Montana, Rural Institute
52 Corbin
Missoula, MT 59812
406-543-9356
www.livingwellweb.com
A Practical Guide to Health Promotion after Spinal Cord Injury
This guides provides a broad view of health promotion and spinal cord injury, including areas such as nutrition, smoking cessation, physical fitness, and stress management. The book contains educational handouts, resources, and personal accounts of issues related to health promotion.
Aspen Publishers, Inc.
7201 McKinney Circle
Frederick, MD 21701
800-447–1717
www.aspenpublishers.com
Prevention of Secondary Conditions
Spinal Cord Injury Information Network
This network is a web-based information source for people with spinal cord injuries, families, and professionals. The project has developed a series of SCI InfoSheets, which are typically 4-6 pages and written at different knowledge levels and for different audiences and contain information on conditions that may be experienced by individuals with a spinal cord injury. InfoSheet titles include:
• Heterotropic Ossification (Professionals)
• Prevention of Pressure Sores Through Skin Care
• Challenges of Spastic Hypertonia
• Understanding and Managing Respiratory Complications after SCI
• Pain Management Following Spinal Cord Injury
UAB RRTC on Secondary Conditions in Spinal Cord Injury
1717 6th Avenue South, Room 506
Birmingham, AL 35233-7330
205-934-3283
www.spinalcord.uab.edu
Craig Hospital Research Department
The research department at Craig has developed online educational tools to improve the health of individuals with spinal cord injuries. The website contains an online interactive health assessment tool and an extensive collection of articles on health and wellness. (Click “SCI Health and Wellness”). Articles include:
• Aching Shoulders? • Osteoporosis,
• Diabetes • Spasticity
• Fatigue • Upper-Extremity Pain
• Heart Disease
Craig Hospital Research Department
3425 South Clarkston Street
Englewood, CO 80110
303-789-8308
www.craighospital.org
Paralyzed Veterans of America (PVA)
This organization provides numerous educational materials on living with a disability and preventing secondary conditions for individuals with multiple sclerosis and spinal cord injury. Materials include Clinical Practice Guidelines, which are designed for professionals, and Consumer Guides. These materials are available on the PVA website. Topics include:
• Fatigue and Multiple Sclerosis
• Urinary Dysfunction and Multiple Sclerosis
• Fatigue, What You Should Know
• Pressure Ulcer Prevention and Treatment Following Spinal Cord Injury
• Prevention of Thromoembolism in Spinal Cord Injury
• Depression Following Spinal Cord Injury
• Neurogenic Bowel: What You Should Know
• Pressure Ulcers: What You Should Know
• Autonomic Dysreflexia: What You Should Know
PVA
801 18th Street, NW
Washington, DC 20006-3517
800-424-8200
www.pva.org
National Multiple Sclerosis Society
This organization provides information and resources on many topics related to Multiple Sclerosis. The website contains numerous brochures on specific conditions that can be experienced by individuals with MS, such as spasticity, fatigue, vision problems, pain, speech problems, bowel and bladder problems, and cognitive problems (Click “library,” then “brochures,” then “managing specific issues”).
National Multiple Sclerosis Society
733 Third Avenue
New York, NY 10017
800-344-4867
www.nationalmssociety.org
Reducing Risks for Secondary Conditions
These booklets, developed by the Research and Training Center on Independent Living, address the prevention and management of secondary conditions that affect individuals with sensory and motor disabilities. Booklet topics include the following:
• Pressure Sores • Urinary Tract Infections
• Chronic Pain Management • Chronic Fatigue
• Joint Problems • SCI and Aging
• Spasticity • Contractures
• Depression • Deconditioning and Weight Gain
• Bowel Dysfunction • Sexuality
The Research and Training Center on Independent Living
University of Kansas, Life Span Institute
4089 Dole
Lawrence, KS 66034-2930
913-864-4095
www.lsi.ku.edu/rtcil/
Preventing Secondary Medical Complications: A Guide for Personal Assistants to People with Spinal Cord Injury
This booklet is designed to help personal care assistants (PCA) working with the person with SCI. It gives the PCA instructions for giving proper health care assistance that can help prevent medical complications. A daily schedule/checklist is provided.
UAB RRTC on Secondary Conditions in Spinal Cord Injury
1717 6th Avenue South, Room 506
Birmingham, AL 35233-7330
205-934-3283
www.spinalcord.uab.edu
Self-Care and Living with a Disability
Multiple Sclerosis: A Self-Care Guide to Wellness
This book is designed to provide self-care tips to promote independence and well-being. Topics include stress, nutrition, exercise, and sexuality along with other issues relevant to MS. It is available from the Paralyzed Veterans of America (PVA).
PVA
801 18th Street, NW
Washington, DC 20006-3517
800-424-8200
www.pva.org
Managing Post-Polio: A Guide to Living Well with Post –Polio Syndrome
This consumer-oriented guide provides tips and strategies to living with Post-Polio - an often misdiagnosed condition. The book is available from the National Rehabilitation Hospital.
National Rehabilitation Hospital
Center for Health & Disability Research
1016 16th Street, N.W., Suite 400
Washington, DC 20036
202-466-1900
www.nrhchdr.org
Yes, You Can! A Guide to Self-Care for Persons with Spinal Cord Injury, 3rd Edition
This popular guide has been updated and expanded to include information on health promotion and wellness. Topics include substance abuse, exercise, alternative medicine, and staying healthy. This book is available from Paralyzed Veterans of America.
PVA
801 18th Street, NW
Washington, DC 20006-3517
800-424-8200
www.pva.org
Spinal Cord Injury: A Manual for Healthy Living
This manual contains practical information for anyone with a spinal cord injury, family member, or health professional. The manual covers 29 topics related to living with a spinal cord injury and maintaining health and wellness. The publication is available from the Institute for Rehabilitation Research.
The Institute for Rehabilitation Research
Baylor College of Medicine
1333 Moursund Drive, D-112
Houston, TX 77030-3405
713-797-5947
pcornell@bcm.tmc.edu
Spinabilities: A Young Person’s Guide to Spina Bifida
This book written for youth with Spina Bifida contains information and resources about living with Spina Bifida. Topics cover issues such as health and personal care, relationships, transitions, and healthy living practices.
Woodbine House
6510 Bells Mill Road
Bethesda, MD 20817
800-843-7323
www.woodbinehouse.com
Disability Resources Monthly
A monthly subscription newsletter that monitors, reviews, and reports on resources for independent living. Each concise, information-packed issue features short topical articles, reviews, and news about free, inexpensive, and hard-to-find books, pamphlets, videotapes, online sources, and organizations. The website contains information on numerous health and independent living Internet links and includes resources by state.
Disability Resources Monthly
Four Glatter Lane
Centereach, NY 11720
631-580-0290
www.disabilityresources.org
Living a Healthy Life with Chronic Conditions: Self management of Heart Disease, Arthritis, Diabetes, Asthma, Bronchitis, Emphysema and Others
Based on a research study at Stanford University, this book includes the input of hundreds of people with long-term health conditions. The book contains sections on nutrition, exercise, sexuality, working with health-care professionals and the health care system, and information on specific conditions.
Bull Publishing Company
PO Box 208
Palo Alto CA 94302-0208
650-322-2855
www.bullpub.com
The Arthritis Foundation’s Guide to Managing Your Arthritis
This book provides basic information on managing and treating pain and stiffness associated with a variety of forms of arthritis. It contains information on exercise, alternative therapies, and ways to live a healthier life with arthritis.
Arthritis Foundations
P.O. Box 7669
Atlanta, GA 30357
800-283-7800
www.arthritis.org
Health Promotion and Disability
Physical Activity
People with disabilities are less likely to be physically active than people without disabilities, yet they have similar needs to promote health and prevent disease. Along with much of the general population, people with disabilities are looking toward a variety of ways of increasing physical activity such as daily activities, less strenuous exercise, and recreation. This broad understanding of physical activity is reflected in the resources listed below.
A Good Place to Start…
National Center on Physical Activity and Disability (NCPAD)
NCPAD is a comprehensive and valuable collection of resources and information on a broad array of issues related to physical activity and disability. The center is primarily web-based, but offers toll-free access to information specialists. The website contains the following:
• Two-page fact sheets on sports and recreation activities and exercise guidelines for specific disabilities.
• Monographs with more detailed information on exercise as it related to specific disabilities as well as other information on wellness.
• Searchable database containing citations and references, programs and facilities, adaptive equipment, and organizations related to physical activity and disability.
• Exercise modules allowing individuals with disabilities to customize a fitness program according to their specific needs.
These and other resources are continually updated. Information specialists can help with information not available on the website.
NCPAD
University of Illinois at Chicago
1640 West Roosevelt Road, Suite 711
Chicago, IL 60608-6904
800-900-8086
www.ncpad.org
Exercise for Specific Disabilities
Amputee Coalition of America (ACA)
This consumer educational organization houses the National Limb Loss Information Center providing access to an information specialist and an online library of resources including numerous articles on exercise and fitness (Click on “Information Center,” then “Virtual Library”). The ACA website also includes a listing of exercise videos available for purchase (Click on “ACA Marketplace”).
ACA
900 East Hill Avenue, Suite 285
Knoxville, Tennessee 37915-2568
888-AMP-KNOW
888-267-5669
www.amputee-coalition.org
United Cerebral Palsy (UCP)
The UCP website contains many resources related to sports and leisure, including exercise. Online documents such as, Exercise Principles and Guidelines for Persons with Cerebral Palsy and Neuromuscular Disorders, provide valuable information (Click on “Sports & Leisure” under “Channels”).
UCP
1660 L Street, NW, Suite 700
Washington, DC 20036
800-872-5827
www.ucp.org
Exercise and Nutrition Health Education Curriculum for Adults with Developmental Disabilities
This curriculum is designed to improve the health and wellness of adults with developmental disabilities through education and development of personal exercise and nutrition goals and action plans. The curriculum was designed as a 12-week, 36 session program but specific modules can be adapted and customized to fit individual needs. The curriculum is available from the Rehabilitation Research Center on Aging and Developmental Disability (RRTCADD).
RRTCADD
University of Illinois at Chicago
1640 West Roosevelt Road
Chicago, IL 60608 –6904
800-996-8845
www.uic.edu/orgs/rrtcamr
American Diabetes Association (ADA)
The ADA website provides numerous educational resources on exercise and healthy living for individuals with diabetes. Resources available online include articles, brochures, and books to motivate individuals to exercise.
American Diabetes Association
1701 North Beauregard Street
Alexandria, VA 22311
800-DIABETES (342-2383)
www.diabetes.org
Conditioning with Physical Disabilities
This consumer-directed guide provides exercises for people with all levels of physical disability. The book contains many pictures and illustrations, providing step-by-step descriptions of exercises and activities.
Human Kinetics
P.O. Box 5076
Champaign, IL 61825
800-747-4457
www.hkusa.com
Craig Hospital Research Department
Craig has developed online educational tools to improve the health of individuals with spinal cord injuries. The website contains an extensive list of health and wellness articles, including exercise, and an online interactive health assessment tool (Click “Spinal Cord Injury,” then “Health and Wellness”).
Craig Hospital Research Department
3425 South Clarkston Street
Englewood, CO 80110
303-789-8308
www.craighospital.org
Exercise and Fitness Programs
Removing Barriers to Health Clubs and Fitness Facilities
This publication provides guidelines and suggestions to assist fitness facilities to become more welcoming and useable for people with disabilities and a broad client base including older adults. It includes sections on welcoming people with disabilities, facility accessibility features with illustrations, selecting accessible equipment, and assisting people with disabilities.
North Carolina Office on Disability and Health
UNC-CH, CB 8185
Chapel Hill, NC 27599-8185
Fax: (919) 966-0862
www.fpg.unc.edu/~ncodh
Fitness Management
This magazine, formerly Fitness World, is read by a large number of fitness professionals and has addressed issues of exercise, disability, and facility accessibility. The website contains all of the archived articles which can be accessed after a simple registration process. Articles such as, ADA Compliance for Pools and Wet Areas and Strength Training Equipment for Special Populations can be found along with other articles in the following topic areas, “Aquatics, “Equipment,” “Special Groups, “ and “Older Adults” (Click “Library of Articles”).
Fitness Management
4160 Wilshire Blvd.
Los Angeles, CA 90010
www.fitnessmanagement.com
American College of Sports Medicine’s Exercise Management for Persons with Chronic Diseases and Disabilities
This book is written for exercise trainers, providing exercise protocols for a wide variety of chronic health conditions, diseases, and disabilities. The book provides an overview and recommendations for exercise programming and testing for each disability.
Human Kinetics
P.O. Box 5076
Champaign, IL 61825
800-747-4457
www.hkusa.com
Fitness Programming and Physical Disability
This publication is used as the training manual for a course developed by Disabled Sports USA to train fitness professionals to work with individuals with disabilities. It includes an overview of specific disabilities and information on techniques and guidelines for aerobic, strength, and flexibility training.
Human Kinetics
P.O. Box 5076
Champaign, IL 61825
800-747-4457
www.hkusa.com
Exercise for People with Disabilities: Getting started on your fitness plan
This booklet, developed by the RRTC on Independent Living, discusses why physical activity is important for people with disabilities and recommends strategies to become more physically active. It also talks about barriers to exercise and presents five different activity categories – aerobic exercise, muscular strength and endurance, weight-bearing exercise, and skill-related exercise.
University of Kansas, Research and Training Center on Independent Living
1000 Sunnyside Avenue
Room 4089, Dole Center
Lawrence Kansas, 66045
785-864-4095
www.lsi.ku.edu/rtcil/
Physical Activity for the General Population
Centers for Disease Control and Prevention (CDC)
The Surgeon General’s report on physical activity and health changed the way Americans were told to approach physical activity. The CDC website contains this document in addition to many others on physical activity (Click on “Health Topics A-Z”, then “Physical Activity and Health”). The website also contains the publication, Ready, Set, It’s Everywhere You Go. Because of the broad and achievable definition of physical activity, this planning and information tool can be easily adapted to promote physical activity among people with disabilities.
Centers for Disease Control and Prevention
1600 Clifton Road
Atlanta, GA 30333
800-311-3435
www.cdc.gov
Shape Up America
Shape Up America is a non-profit organization developed to promote healthy weight and increased physical activity. It involves a broad-based coalition of industry, medical/health, nutrition, physical fitness and related organizations, and experts. Shape Up America stresses simple changes in dietary choices and exercise habits. The website is designed to provide support and information on fitness, weight management, and the link between diabetes and obesity.
www.shapeup.org
American College of Sports Medicine (ACSM)
Through their activities, ACSM works to increase public awareness about the positive aspects of physical activity. The ACSM website contains numerous publications that provide important information on exercise including information for older adults. The “Publications” section of the website contains educational brochures, and additional information can be found under “ACSM Public Information” (Click on “ACSM Healthy Activity Updates”).
American College of Sports Medicine
401 West Michigan Street
Indianapolis, IN 46202
317-637-9200
www.acsm.org
National Institute on Aging (NIA)
NIA provides health and exercise information that can be found via the website search engine using the keyword, “exercise” (Click “Health Information”, then “Publications”). In addition to booklets and fact sheets, NIA also has an exercise video and book entitled, Exercise: A Guide for the National Institute on Aging and the National Aeronautics and Space Administration. This book provides very practical information and guidelines that can be easily adapted for anyone.
NIA
Building 31, Room 5C27
31 Center Drive, MSC 2292
Bethesda, MD 20892
301-496- 1752
www.nia.nih.gov
Adapted Sports and Recreation
American Association of Retired Persons (AARP)
This organization has recently added a lot of information to their website on health and wellness for individuals over 50 years old, but much of the information applies to all ages. The wellness series Keep Active: Get Movin’ provides numerous articles on exercise and related issues (Click on “Health and Wellness”).
AARP
601 E Street NW
Washington, DC 20049
800-424-3410
www.aarp.org
Paralyzed Veterans of America (PVA)
PVA provides many sports and recreation opportunities in addition to providing online information. The online publications, entitled A Guide to Wheelchair Sport and Recreation and Live Life to the Fullest: A Guide to PVA Sports and Recreation Program provide an initial source of information.
PVA
801 18th Street, NW
Washington, DC 20006-3517
800-424-8200
www.pva.org
Disabled Sports USA
This organization is the national governing body for a large number of sports. It often hosts competitions, clinics, and maintains numerous local chapters throughout the United States and can be an important source of information for adapted sports.
Disabled Sports USA
451 Hungerford Drive, Suite 100
Rockville, MD 20850
301-217-0960
www.dsusa.org
Sports N’ Spokes
This magazine focuses on wheelchair sports and recreation opportunities, equipment, and competition.
2111 East Highland Avenue, Suite 180
Phoenix, AZ 85016-4702
602-224-0500
www.sportsnspokes.com
Active Living
This magazine contains articles and information on recreation and sports in addition to exercise, nutrition, and other health promotion topics.
2276 Rosedene Road
St. Ann’s, ON L0R 1Y0
905-957-6016
www.activelivingmagazine.com
Access to Recreation
This catalog contains adaptive exercise, sports, and recreation equipment available for purchase, as well as a good overview of the types of equipment available.
Access to Recreation
8 Sandra Court
Newbury Park, CA 91320-4302
800-634-4351
www.quadcontrol.com
Recreation: A Great Way to be Active
This booklet is designed to be used by individuals with a disability to guide them through the process of identifying recreation activities that can increase their physical activity.
North Carolina Office on Disability and Health
UNC-CH, CB 8185
Chapel Hill, NC 27599-8185
Fax: (919) 966-0862
Email: odhpubs@mail.fpg.unc.edu
www.fpg.unc.edu/~ncodh
Special Olympics International
Known for their competitions for individuals with cognitive disabilities, Special Olympics has expanded to include a health agenda through the Healthy Athletes Initiative. These include vision, hearing, and oral health screening available through some Special Olympics events.
Special Olympics
1325 G Street NW, Suite 500
Washington, DC 20005
202-628-3630
www.specialolympics.org
Therapeutic Recreation
National Center on Accessibility
The National Center on Accessibility focuses primarily on accessibility as it relates to recreation, parks, and tourism. Major activities include providing technical assistance, developing resources and training materials, and conducting educational programs. They publish Access Today, a free publication providing updates about current developments in the areas of accessibility and recreation.
National Center on Accessibility
2805 East 10th Street, Suite 109
Bloomington IN, 47408
812-856-4422
812-856-4421 (TTY)
www.ncaonline.org
Community Recreation and Persons with Disabilities
This book addresses the issue of inclusion and provides strategies and guidelines to ensure that people with disabilities are given equal access to community recreation opportunities.
Brookes Publishing
P.O. Box 10624
Baltimore MD 21285-0624
800-638-6775
www.brookespublishing.com