Rehabilitation
Research and Training Center onAging with a Disability
FACT SHEET
By June Isaacson Kailes, Disability Policy Consultant
ADVOCACY
ADA Watch Online - www.adawatch.org
Nonprofit informational online network designed to activate the disability community's grassroots in response to threats to civil rights protections for people with disabilities. Educates and informs people with disabilities, disability advocates, members of the general public, the business community, policy makers, and the media regarding threats to civil rights protections for people with disabilities.
Advocacy Resources - www.jik.com/advlinks.html Advocacy gateway with links regarding: disability specific advocacy, activism and public policy, health policy, advocacy books, online readings, coalitions and collaborating, independent living centers, leadership, media, and negotiating.
American Association of People with Disabilities - www.aapd.com The largest national nonprofit cross-disability member organization in the United States, dedicated to ensuring economic self-sufficiency and political empowerment for the more than 56 million Americans with disabilities. Works in coalition with other disability organizations for the full implementation and enforcement of disability nondiscrimination laws, particularly the Americans with Disabilities Act of 1990 and the Rehabilitation Act of 1973.
Center for Disability Issues and the Health Professions (CDIHP), Western. University – www.cdihp.org Works to enhance health professions education, and to improve access for people with disabilities to health, health education and health care services.
Independent living Resources - www.jik.com/ilcs.html Gateway to independent living resources, centers for independent living and State Independent Living Councils listings, articles, and more.
National Council on Independent Living NCIL– www.ncil.org NCIL is the oldest cross disability, grassroots organization run by and for people with disabilities. Founded in 1982, NCIL represents over 700 organizations and individuals including: Centers for Independent Living (CILs), Statewide Independent Living Councils (SILCs), individuals with disabilities, and other organizations that advocate for the human and civil rights of people with disabilities throughout the United States.
World Institute on Disability (WID) - www.wid.org A research, public policy and advocacy center dedicated to promoting independence and societal inclusion of people with disabilities.
AGING WITH DISABILITY
Aging and Cerebral Palsy: The Critical Needs, A Report from the Roundtable on Aging and Cerebral Palsy (March 1997) - www.jik.com/awcp.html Covers: exercise, women's issues, quality of medical care, medical problems that worsen with age, emotional and psychological issues, and managed care, dissemination of research, regional centers, and communication.
Aging with a Disability: Conclusions after a Visit to the USA (March 1998) www.jik.com/awdnor.html A short version of a Norwegian report by authors who are sociologists from Norway.
Aging With Developmental Disabilities: Women's Health Issues - www.thearc.org/faqs/whealthindx.html A fact sheet developed by The Arc.
Clearinghouse on Aging and Developmental Disabilities -
www.uic.edu/orgs/rrtcamr/clearin ghouse.htm Covers: assistive technology, community inclusion, family issues, general aging with developmental disability, housing, physical & psychosocial changes, policy/service delivery, quality of life, and self-advocacy.
Health, Wellness and Aging with Disability Resources - www.jik.com/hwawd.html
Information on Secondary Conditions – http://www.lsi.ku.edu/lsi/centers/ Includes information on pressure sores, urinary tract infections, chronic pain management, chronic fatigue, joint problems, SCI and aging, spasticity, reconditioning, and contractures.
Meeting the Challenges of Aging with a Disability: Lessons Learned from Post Polio and Stroke http://codi.buffalo.edu/graph_based/.aging/.conf/ A Research Update with Practical Applications, Conference Proceedings, March 19-20,1993, Long Beach, California.
Personal Perspectives on Giving: On Giving Out, Giving In, Giving Up and – Giving Back by Linda Gonzales http://www.crowdbcm.net/Gonzales-on-Giving.htm
Rehabilitation Research and Training Centers on Aging with Developmental Disabilities (RRTCADD), University of Illinois, Chicago - www.uic.edu/orgs/rrtcamr Promotes the independence, productivity, community participation, full citizenship, and self-determination of older adults with intellectual and related developmental disabilities through a coordinated program of research, training, technical assistance, and dissemination.
Rehabilitation Research and Training Center (RRTC) on Aging with a Disability - www.agingwithdisability.org Investigates the impact of aging upon people with a disability, examining such issues as:
- Health changes
- Psychological reactions
- Family needs
- Job accommodation
ASSISTIVE TECHNOLOGY
Abledata - www.abledata.com Provides information on assistive technology and rehabilitation equipment available from domestic and international sources. Database contains: information on assistive technology products, from white canes to voiceoutput programs; detailed descriptions of each product includingprice and company information; and information on non-commercial prototypes, customized, one-of-a-kind products, and do-it-yourself designs.
Alliance for Technology Access (ATA) - www.ataccess.org A national network of community-based resource centers dedicated to providing information and support services to children and adults with disabilities, and increasing their use of standard, assistive, and information technologies.
Assistive Technology (CA Only) – www.atnet.org California 's AT Network expands the accessibility of tools, resources and technology that will help increase independence, improve personal productivity and enhance the quality of life for all Californians.
Med-Sell - http://www.disabilityonline.com/categories/daily_living_products/used_equipment/ Helps people buy and sell used medical equipment and find accessible housing. This includes: wheelchair equipped vans, scooters, hospital beds, canes, walkers, Sleep Apnea machines, TENS units, ramps, hand controls, Hoyer lifts, wheelchairs, electric wheelchairs, transfers benches, commodes, cushions, standing frames, stair glides, curb-siders, doctor's office equipment and hospital medical equipment.
Rehabilitation Engineering and Assistive Technology Societyof North America (RESNA) - www.resna.org RESNA is an interdisciplinary association whose goal is to improve the potential of people with disabilities to achieve their goals through the use of technology by promoting research, development, education, advocacy and the provision of technology. Members promote the exchange of ideas and information for the advancement of assistive technology.
DISABILITY PRESS
Disability Resources - www.disabilityresources.org The Disability Resources Monthly (DRM) guide to disability resources on the Internet.
Disability World (interviews, news, in-depth articles on disability issues from 25 countries)- www.disabilityworld.org
New Horizons Newsletter (by and for ventilator users, their families and those that care for them) - www.makoa.org/newhorizons
New Mobility Magazine - www.newmobility.com
Paralinks Electronic Magazine (electronic magazine for people with spinal cord injury) - www.paralinks.net/index.html
Ragged Edge Online - www.ragged-edge-mag.com
Orchid Magazine (for women with disabilities) - www.fpg.unc.edu/~ncodh/orchid
DISABILITY SPECIFIC INFORMATION
American Paraplegia Society (APS) – www.apssci.org A national organization dedicated to improving the quality of medical care delivered to persons with spinal cord impairment (SCI).
American Spinal Injury Association (ASIA) - http://www.asia-spinalinjury.org/home/index.html A health care membership organization that promotes and establishes standards of excellence for all aspects of health care of individuals with spinal cord injury from onset throughout life.
Disabled American Veterans (DAV) - www.dav.org The voice of America's service-connected disabled veterans that represents all of America's 2.1 million disabled veterans, their families and survivors. It offers a nationwide network of services that are free of charge to all veterans and members of their families.
Mental Health Services Knowledge Exchange Network – http://www.mentalhealth.org/ The Knowledge Exchange Network (KEN) is a source of information and resources on mental health.
Missouri Arthritis Rehabilitation Research and Training Center (MARRTC) http://www.muhealth.org/~pmr/arthritis/ Information, research results and training on arthritis, articles on living well with arthritis, treatment issues, and has condition-specific information.
National Spinal Cord Injury Association (NSCIA) - www.spinalcord.org Enables people with SCI and diseases to achieve their highest level of independence, health, and personal fulfillment by providing resources, services, and peer support.
National Stroke Association - www.stroke.org Provides education, services and community based activities in prevention treatment, rehabilitation and recovery. NSA serves the public and professional communities.
Paralyzed Veterans of America (PVA) - www.pva.org Dedicated to quality health care for PVA members, research and education that addresses spinal cord injury and dysfunction, benefits available as a result of PVA members' military service, and civil rights and opportunities which maximize the independence of PVA members.
Polio Connection of America – http://www.geocities.com/w1066w/ Offers publications, health sources and resources on polio and post polio syndrome (or "late effects of polio").
Polio Survivors Association – http://www.polioassociation.org/ Dedicated to improving the quality of life for severely disabled polio survivors. Works with local polio support groups, medical professionals, and public agencies to gain a greater understandingof polio's late effects.
Rehabilitation Research and Training Center (RRTC) on Secondary Conditions of Spinal Cord Injury, University of Alabama at Birmingham – http://www.spinalcord.uab.edu/show.asp?durki=21392 Conducts research and training in the prevention and treatment of secondary conditions of spinal cord injury. Activities include: investigating and evaluating interventions to prevent and treat pressure ulcers, respiratory complications, urinary tract infections, pain, obesity, and depression, developing and evaluating exercise protocols, stress management techniques, and diet and nutrition regimens, addressing the unique needs of people with SCI from minority backgrounds who live in urban areas as well as women with SCI.
Rheumatoid Arthritis – http://www.ohsu.edu/medicine/divisions/rheum/clinic.html
Spinal Cord Injury Information Network - www.spinalcord.uab.edu Provides information on equipment, technology, and political issues.
United Cerebral Palsy - www.ucpa.org Information about education, housing, sports and leisure, employment, parenting and families, transportation, health and wellness, products and services, and travel. Site also connects to UCP affiliates throughout the U.S.
DISASTER PREPAREDNESS
Disaster Resources for People with Disabilities and Emergency Managers – www.jik.com/disaster.html includes disability specific information on preparedness, response and recovery, fire safety, legal issues and disability rights, role of community based organizations and disaster plans (samples)
EMPLOYMENT
Employment for People with Disabilities – http://www.worksupport.com/ Identifies factors that enhance or inhibit businesses from accessing a pool of potential employees. Provides information, resources and services regarding the employment of people with disabilities.
Job Accommodation Network (JAN) - http://janweb.icdi.wvu.edu JAN is a free consulting service that provides information about job accommodations, the Americans with Disabilities Act (ADA), and the employability of people with disabilities.
EXERCISE
National Center on Physical Activity and Disability – http://www.ncpad.org/ Encourages people with disabilities to participate in regular physical activity as a means of promoting healthy life-styles and preventing development of secondary conditions. Gathers, organizes, evaluates, synthesizes, and disseminates information on the state of the science in physical activity and disability. They offer a variety of resources for people with disabilities, fitness and exercise professionals, health professionals, and researchers interested in disability and physical activity. Fact sheets are available on the following topic areas: Recreation and Leisure Time Activities, Exercise and Fitness Activities, Sports and Team Games, Information on Specific Disabilities and Conditions.
HEALTH INFORMATION
Half the Planet, The Disability Resource – http://www.halftheplanet.org/ The disability community can access services and products, connect with peer support, and keep up with disability-related news and information all day every day through this website.
Health, Wellness, and Aging with Disability - www.jik.com/hwawd.html A gateway of information on a variety of topics from assistive technology to exercise to travel to women's issues.
Healthfinder - www.healthfinder.gov/ A health information gateway provided by the U.S. Government.
Health World Online – http://www.healthy.net/
- Directory of Health Conditions
- Directory of Alternative Therapies
- Directory of Health Care Professionals
- Directory of Healthy Shopping
National Center for the Dissemination of Disability Research (NCDDR) - www.ncddr.org
Provides a central information resource on NIDRR-funded research projects and increases the accessibility of research outcomes. Links to a variety of research findings:
- Advanced Rehabilitation Research Training Projects
- Americans with Disabilities Act ( ADA) Technical Assistance Programs
- Disability and Rehabilitation Research Projects (DRRPs)
- Fellowships
- Field-Initiated Projects
- Model Spinal Cord Injury Systems
- Rehabilitation Engineering Research Centers
- Rehabilitation Research and Training Centers
- Small Business Innovative Research
- State Technology Assistance Projects
- Utilization Projects
Rosenthal Center for Complementary and Alternative Medicine, Columbia University - www.rosenthal.hs.columbia.edu Created in 1993 as one of the first centers at a major medical school devoted specifically to research, education and training in complementary and alternative medicine.
Rural Health and Wellness, Secondary Conditions, and Managed Care - http://rtc.ruralinstitute.umt.edu/health/RuH.htm Contains fact sheets, research reports, publications, and links on health and disability resources. Rural Health Research Team:
- Examines the health issues faced by rural and remote Americans with limitations
- Documents the extent of rural health care problems (such as the effect of managed care on health care quality)
- Develops innovative self-help intervention and prevention strategies that rural residents can use to improve their health and evaluates and disseminates these interventions
- Conducted research showing that people with disabilities annually experience multiple secondary conditions that significantly reduce their independence
- Developed an Independent Living Center (ILC)-based wellness model that helps consumers improve their health and independence
- Examines access to health care to rural people with disabilities, with particular emphasis on those issues contributing to the onset, prevention, and management of secondary conditions
WebABLE - www.webable.com Disability-related Internet resources. Goal is to stimulate education, research, and development of technologies that will ensure accessibility for people with disabilities to advanced information systems and emerging technologies.
HOME MODIFICATION
Home Modification Resource Center - www.homemods.org Offers strategies and materials for policy makers, practitioners, consumers, manufacturers, suppliers, and researchers. Focus includes:
- Promoting aging in place for elderly and persons aging with a disability
- Increasing the ability of states, communities, the private sector, and service providers to integrate supportive housing and home modifications within existing housing, health and social service systems
- Maximizing single family and multi-unit housing as a long-term-care resource
- Providing families and individuals with knowledge to plan for their housing, health and supportive service needs
- Influencing developers and contractors to build accessible and supportive housing that promotes healthy, independent living, community-based care systems, housing programs, and health service organizations
- Conducting training and education
- Conducting applied research, evaluation, and policy analysis
- Providing technical assistance
- Acting as an information clearinghouse that provides objective information and conducts targeted information dissemination
WOMEN'S ISSUES
Breast Health Access for Women with Disabilities (BHAWD) – http://www.bhawd.org/sitefiles/index2.html BHAWD is a model of comprehensive breast health services tailored to the functional abilities and special needs of women with physical and vision impairments.
Center for Research on women with Disabilities (CROWD) - www.bcm.tmc.edu/hcoa/crowd/crowd.html A research center focusing on issues related to health, aging, civil rights, abuse and independent living. Its purpose is to promote, develop, and disseminate information to expand the life of women with disabilities.
National Women's Health Information Center – http://www.4woman.gov/wwd/index.htm Provides a gateway to the vast array of Federal and other women's health information resources.
LeeAnne Carrothers, PT, PhD,
Training Director RRTC on Aging with a Disability
7601 E. Imperial Highway , 800 West Annex
Downey , CA 90242 (562) 401-7402
email: lcarrothers@agingwithdisability.org
website: www.agingwithdisability.org
Published by the Rehabilitation Research and Training Center on Aging with A Disability, Rancho Los Amigos National Rehabilitation Center, Downey, CA. Supported by a grant from the National Institute on Disability and Rehabilitation Research, Office of Special Education and Rehabilitative Services, U.S. Dept. of Education, # H133B031002
Rehabilitation
Research and Training Center on Aging with a Disability
Rancho Los Amigos National Rehabilitation Center
7601 E. Imperial Hwy, Building 800-W
Downey, California 90242; (voice) 562-401-7402; (fax) 562-401-7011
webmaster: chuck.sanders@agingwithdisability.org
last updated 7/14/2008
