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Advocacy

Disability advocacy groups are comprised of people working together to provide resources and promote full community participation for people with spinal cord injuries and other disabilities. This list includes the top consumer education and family resource centers, disability-rights advocacy organizations, and foundations that support spinal cord injury recovery.

Access Living

Access Living is a nonprofit organization in Chicago, IL whose aim is to empower the disabled community. They offer programs dedicated to helping people with disabilities live as independently as possible and also advocate for equal rights and fair housing and work to educate society on disability issues. Their independent living programs provide counseling, financial education, and help with acquiring a personal assistant. Access Living also offers community development services specifically for youth and women.

 

American Association of People with Disabilities

The AAPD is a national nonprofit member organization focused on advocacy and on making the voice of the disability community heard. This group sponsors career and leadership programs for disabled individuals and promotes legislative action to create a more accessible world. Persons with disabilities are encouraged to join AAPD to participate in coalition activities to advocate in education, workplace & employment, health, housing, technology, transportation, interfaith organizations, as well as supporting international best-practices, advocacy for veterans, and voting. The AAPD Summer Internship Program places college, graduate, and law students in paid 10-week summer internships in Congressional offices, federal agencies, non-profit and for-profit organizations in Washington, DC. Disability Mentoring Day is a large-scale notional effort coordinated by AAPD to promote career development. Disability statistics, demographics and trends are addtionally provided through the Resource tab of this website.

Americans with Disabilities Act Title II Action Guide for State and Local Governments

Access to civic life by people with disabilities is a fundamental goal of the Americans with Disabilities Act. State and local governments (public entities) have obligations under Title II of the ADA to provide people with disabilities an equal opportunity to participate in all services, programs and activities. This website leads public entities through a process to compliance with the ADA.

Being Your Own Advocate: Living with a Disability or Chronic Illness

Learning to advocate for yourself or loved one is an important step in coping with a disability or chronic illness. This consumer education sheet from the Rehabilitation Institute of Chicago provides some basic tips to help you and others gain a sense of empowerment.

Caregiver Action Network

The Caregiver Action Network is the nation’s leading family caregiver organization working to improve the quality of life for more than 65 million Americans who care for loved ones with chronic conditions, disabilities, disease, or the frailties of old age. CAN is a non-profit that serves a broad spectrum of family caregivers ranging from the parents of children with special needs, to the families and friends of wounded soldiers; from a young couple dealing with a diagnosis of MS, to adult children caring for parents with Alzheimer’s disease.

disABILITY Resource Center (DRC)

The disABILITY Resource Center (DRC) is a not-for-profit organization run for and BY people with disabilities.  They are a community-based non-residential program of services designed to assist people with disabilities to gain independence and to assist the community in eliminating barriers to independence.  The DRC is also a Center for Independent Living (CIL) and hosts a number of events each year to support active community participation. 

 
Disability Rights Education and Defense Fund

The Disability Rights Education and Defense Fund, founded in 1979, is a leading national civil rights law and policy center directed by individuals with disabilities and parents who have children with disabilities. The mission of the Disability Rights Education and Defense Fund is to advance the civil and human rights of people with disabilities through legal advocacy, training, education, and public policy and legislative development. The Special Education Resources section provides an array of consumer information sheets to help parents and students with disabilities.

Disabled In Action

Based in New York, NY, Disabled in Action is a civil rights organization committed to ending discrimination against people with disabilities — all disabilities.  They fight to eliminate the barriers that prevent people with disabilities from enjoying full equality in American society. Founded in 1970, DIA is a democratic, not-for-profit, tax-exempt, membership organization. DIA consists primarily of and is directed by people with disabilities. They believe in their motto, “Nothing about us without us!”

Disabled World: Spinal Cord Injury

Disabled World provides and news to the disability community, organizations, and disability rights campaigners, via a disability news service, articles, and videos related to health and disability around the world.  The Spinal Cord Injury section provides basic information and recent medical research on Spinal Cord Injury developments.  

Family Caregiver Alliance

The Family Caregiver Alliance offers comprehensive online tools for caregivers in all locations and situations, including those caring for a spinal cord injury. Users can listen and view Caregiver Webinars on a variety of subjects. Workshops, classes, and events are also available across California. The Caregiving Fact Sheets offer extensive lists of information and tips on topics, such as self-advocacy and stress management.

Family Voices

This national network is committed to providing families of children with disabilities with tools to advocate for family-centered health care, which Family Voices describes as “community-based, coordinated…and guided by what is best for each child and family.” In this system, the family is emphasized as an equal partner in decision-making for health care. This website offers a wealth of material, including statistics and information on disability-rights legislation, details on family support systems and links to initiatives to improve family-focused health care. You’ll also find contact information for the Family Voices organization closest to you.

 

Florida Spinal Cord Injury Injury Resource Center

The Florida Spinal Cord Injury Resource Center (FSpinal Cord InjuryRC), established in January 1994, serves as the statewide clearinghouse of Spinal Cord Injury resource information for persons who have survived an Spinal Cord Injury, their families and friends, healthcare professionals, support groups, the media, and the general public. Click on Resources on the top toolbar to view A-Z Resources for spinal cord injury.

Greater Boston Chapter of Spinal Cord Injury Association

 The Greater Boston Chapter of NSpinal Cord Injury is a 501 (c) (3) organization working to reach, inspire, support and empower individuals and their families affected by spinal cord injury and paralysis throughout Massachusetts.  GBC provides access to resources, vital information, peer visitors, advocacy and educational information. From the moment of injury, GBC provides one-on-one services to the newly injured and those around them as they learn to cope with dramatic change and adjust to post-injury life. Although the GBC is based in Massachusetts, their website is a great resource for everyone.  Their nationally recognized Peer Visitor and Mentor Program provides positive role models to those who are newly injured and their families.

Greater Kansas City Spinal Cord Injury Association

The Greater Kansas City Spinal Cord Injury Association is a consortium of individuals with spinal cord impairment, health care professionals and service providers.  They aim to be a resource for education, support, services local events. Peer discussion groups meet regularly to share resource information and ideas for adjustment and independence.

 

 

Greater New York Chapter of the National Spinal Cord Injury Association

The Greater New York Chapter of the Spinal Cord Injury Association (NYCSCIA) is a non-profit 501(c)3 organization, whose mission is to help people rebuild their lives after spinal cord injury by providing resources, services and peer support to survivors and their families.  The Chapter works to empower and promote independence for people with spinal cord injuries as they lead active, meaningful lives in their communities. Weekly support groups run throughout the year. NYCSCIA also partners with the NY City Parks to provide an adaptive kayak program.

 
Independent Living Centers – Virtual Listing – National

Centers for Independent Living (CIL) are nonresidential disability advocacy agencies that support people with disabilities to live in the least restrictive community of their choice. This civil right, guaranteed through the Olmstead Decision, states that people with disabilities should receive public benefits and services in the most integrated setting appropriate to their needs. CIL agencies provide a variety of community-based services and peer support. Click on a state to locate an independent living center close to your home.

Independent Living Research Utilization

The ILRU (Independent Living Research Utilization) program is a national center for information, training, research, and technical assistance in independent living. Its goal is to expand the body of knowledge in independent living and to improve utilization of results of research programs and demonstration projects in this field. It is a program of TIRR (The Institute for Rehabilitation and Research), a nationally recognized medical rehabilitation research organization for persons with disabilities.

Since ILRU was established in 1977, it has developed a variety of strategies for collecting, synthesizing, and disseminating information related to the field of independent living. ILRU staff–a majority of whom are people with disabilities–serve independent living centers, statewide independent living councils, state and federal rehabilitation agencies, consumer organizations, educational institutions, medical facilities, and other organizations involved in the field, both nationally and internationally. Extensive consumer education sheets are available in the Resources section of this website.

 
International Center for Disability Resource on the Internet

Founded in 1998, The International Center for Disability Resources on the Internet (ICDRI) is a non-profit center based in the United States and designated as a 501 (c)(3) entity. The ICDRI’s overarching vision is the equalization of opportunities for persons with disabilities. As an internationally recognized public policy center organized by and for people with disabilities, they seek to increase opportunities for people with disabilities by identifying barriers to participation in society, and promoting best practices and universal design for the global community. ICDRI services provide white papers, keynotes and training for conferences, government agencies, universities and private sector organizations. They are also frequently called upon to provide disability rights education and customized programs, and actively participant in public policy strategic planning and implementation for governments in the US and abroad. 

 
LongTermCare.gov

Developed by the U.S. Department of Health and Human Services, this website offers extensive information and resources on long-term-care options. There is basic information about services, cost and planning as well as advice on securing long-term care for your loved one. These pages are also full of useful articles and tools, such as the Long-Term Care Savings Calculator. Scroll down to Find Services for additional resources that can be search nationally by state. 

 

Lotsa Helping Hands

Now when someone asks, “What can I do?” there’s an easily accessible answer. Through this website, you can develop a community of people to help care for a loved one. Users create a personal website and invite others to join and stay updated on the needs of the individual requires help. Within the site is a calendar that keeps track of tasks that need to be done. Each member is able to sign up for different jobs, so caregiving responsibilities are shared and addressed within the group. Scroll through How it Works to better understand the details of this easy to use application.

Medicare Rights Center

This nonprofit consumer service organization works to ensure access to affordable health care for older adults and people with disabilities through counseling and advocacy, educational programs, and public policy initiatives. The website provides detailed information and resources on what benefits you’re entitled to and how to find them. It’s National Telephone Hotline connects you to trained volunteers and staff to help you understand Medicare benefits, find the right coverage, and understand how existing coverage works with Medicare.  The hotline is also available to individuals with Spanish as their primary language.

 

Michigan Spinal Cord Injury Association

The Michigan Spinal Cord Injury Association, is a 501(c)(3) organization with the purpose of enhancing and empowering the lives of those with spinal cord injury and disease through advocacy, education and research.  This a statewide resource center dedicated to providing members with a portal to available community resources, spinal cord injury support groups, and events.

 

 
Mothers Against Drunk Driving(R) (MADD)

Founded by a mother whose daughter was killed by a drunk driver, Mothers Against Drunk Driving® (MADD) is the nation’s largest nonprofit working to protect families from drunk driving and underage drinking. One of the largest victim services organizations in the U.S., MADD also supports drunk and drugged driving victims and survivors serving one person every 9 minutes at no charge. So long as drunk driving impacts our families and friends, MADD’s goal is to increase the number of victims and survivors served, and to continually improve the quality of those services. Click on Victim Services to learn more about finding support and understanding victims’ rights.

National Caregivers Library

FamilyCare America, Inc. created this as a free online source of articles, forms, checklists and links directed toward helping educate and support caregivers in all situations. The Checklists and Forms section provides particularly useful aids in making informed decisions about housing, money, and health issues that apply to all caregivers.

 

National Consumer Voice for Quality Long-Term Care

This group, formed as an outgrowth of work done by advocates working for Ralph Nader and the National Gray Panthers, provides information on federal and state regulatory and legislative policy geared toward improving long-term-care facilities. The Information Library offers resources on common issues for families and caregivers regarding long-term care including specialized information for consumers, family members, and advocates to support decisions in selecting a nursing home, getting quality care, understanding residents’ rights, and tips for family involvement.

National Council on Disability

Appointed by the President of the United States, this council exists to advocate for disability rights and legislation. This website keeps you informed of programs designed to foster a more accessible society. Here you’ll find reports and newsletters about ongoing research, new legislative initiatives as well as meetings and events dedicated to creating national policies on disability. 

National Council on Independent Living

As a membership organization, the NCIL advances independent living and the rights of people with disabilities through consumer-driven advocacy.  The NCIL envisions a world in which people with disabilities are valued equally and participate fully.  It was founded to embody the values of disability culture and Independent Living philosophy, which creates a new social paradigm and emphasizes that people with disabilities are the best experts on their own needs, that they have crucial and valuable perspective to contribute to society, and are deserving of equal opportunity to decide how to live, work, and take part in their communities. 

National Disability Rights Network

This is the website of the nonprofit organization whose goal is to give people with disabilities an equal opportunity to succeed in society. The site offers legal information and tips on how to be an effective advocate by providing fact sheets and court cases as examples as well as a list of common acronyms and terms to help clarify the legal jargon and abbreviations. The Network is the largest provider of legally based advocacy services to peopel with disability in the United States. 

National Spinal Cord Injury Association of Southeastern Wisconsin Chapter

The mission of the National Spinal Cord Injury Association – Southeastern Wisconsin Chapter is to assist people who have some degree of paralysis through injury or disease with a goal of returning them to a life of dignity, self-confidence and independence in a community that is all inclusive.

North Carolina Spinal Cord Injury Association

The North Carolina Spinal Cord Injury Association aims to enable people with spinal cord injury and disease to achieve their highest level of independence, health, and personal fulfillment by providing resources, services, and peer support. The Association’s event calendar provides additional opportunities for active community involvement.

 

 

Office of Special Education and Rehabilitation Services (OSERS)

OSERS is part of the U.S. Department of Education committed to improving opportunities in education and employment for people with disabilities by supporting programs that facilitate equal access to disabled individuals. Here you’ll find research, policies and programs dedicated to this initiative. The website offers detailed information on understanding and implementing important legislation as well as publications and tools for making education and employment more accessible. Within the index in the center of the home page, select Reports & Resources. This page offers publications and fact sheets about employment and educational opportunities, and disability rights.

Office of Warrior Care Policy

The Office of Warrior Care Policy aims to connect Wounded Warriors, Service Members, Veterans, their families and caregivers with those who support them. It provides access to services and resources at the national, state and local levels to support recovery, rehabilitation and community reintegration. Visitors can find information on a variety of topics including benefits & compensation, education & training, employment, family & caregiver support, health, homeless assistance, housing, transportation & travel, volunteer opportunities and other services & resources. For help on how to find resources on the site, visit the How to Use this Site section of the NRD.

 

Rehabilitation International (RI)

Rehabilitation International (RI) is a network of organizations and individuals whose aim is to implement and improve disability rights worldwide. Here you can find out what initiatives are being taken for disability rights on a global level. The About RI Global page highlights current projects and past accomplishments.

 

Rick Hansen Foundation

Here you can read the inspirational story of Canadian Rick Hansen, who has become a celebrated wheelchair athlete and developed a foundation dedicated to raising awareness and creating a more accessible environment for people with spinal cord injury. The Rick Hansen School Program teaches students about access, inclusion, an disability. In addition, the Rick Hansen Foundation helps improve accessibility and quality of life through a variety of community programs. Quality of Life grants are awarded to individuals and organizations each year. You’ll also find links to other helpful websites and information on programs and events sponsored by the Rick Hansen Foundation.

 

South Carolina Spinal Cord Injury Association

The South Carolina Spinal Cord Injury Association helps South Carolinians with spinal cord injury live healthy, independent lives through providing specialized resources, advocacy, and peer support. While based in South Carolina, the website is a valuable resource for people with Spinal Cord Injury and their families. The Living Life to the Fullest  section provides information on adapting to life after a Spinal Cord Injury and includes a resource library and links to various sources of help.

 

Spinal Cord Injury Association of Illinois

Spinal Cord Injury Association of Illinois is a 501(c)3 non-profit organization providing information and support resources for people paralyzed by trauma and medical conditions, family members, and health care and related professionals that serve the Spinal Cord Injury community. This association’s events page identifies ways to participate in outings and fundraising events to support services for spinal cord injury.

Spinal Cord Injury Association of Kentucky

The Spinal Cord Injury Association of Kentucky networks with state, federal, public, and private agencies to raise awareness of people with spinal cord injuries and advocate for their needs.  Their mission of  is to serve those affected by spinal cord injury through increased awareness, greater resource availability and support services, enhanced educational and preventative interventions, as well as increased athletic and recreational opportunities.

Spinal Cord Injury Association of Washington State

Spinal Cord Injury Association of Washington is an organization for people with spinal cord injuries and for all committed to helping them.  The Association supports all interests, regardless of the cause of the injury or the severity of the impairment. They aim to be the first and main resource for all people affected by spinal cord injury, as well as for the family and friends of the injured person. Programs include resource referral, peer support, and a creative Here and Now program that uses social media to foster social support and fellowship.

Spinal Cord Injury Network – Metropolitan Washington, D.C. Chapter

Spinal Cord Injury Network is the Metropolitan Washington, D.C. area chapter of the National Spinal Cord Injury Association.  The Spinal Cord Injury Network provides support and services to people with spinal cord injuries and other mobility impairing conditions, and to their families and friends. Services include Information & Referral, Personal Assistance Service Registry, Peer Counseling, Support Groups, Wheelchair Basketball Team, Art Gallery, and other resource connections.

Spinal Cord Injury Nurse Advice Line

The Spinal Cord Injury Nurse Advice Line is a phone service provided by the outpatient clinic at Craig Hospital, a Model Systems Hospital for people with spinal cord injury. This service provides a dedicated nurse to answer non-emergent calls Monday-Friday between the hours of 9 a.m. – 4 p.m. Nurses at Craig Hospital have the experience to help identify potential complications before they become serious health issues. Two common health concerns are neurogenic bowel or bladder problems and skin issues, both of which can cause major health problems for people living with Spinal Cord Injury if not caught early. In addition to answering health-related questions, callers can obtain educational resources unique for healthy living with this injury.

If you have questions regarding the three following areas, call 800-247-0257 or 303-789-8508 Monday-Friday from 9am to 4pm (MST).

1. A non-emergent medical question arises that does not warrant a trip to the doctor’s office, yet needs answered.

2. Experiencing changes in care and wondering whether it is “normal?”

3. A new caregiver arrives and needs education materials to help in the transition.

Spinal Cord Injury Support Group – Miami, Florida

The Spinal Cord Injury Support Group is a not for profit organization that promotes camaraderie through friendship, education, advocacy and recreation to enhance the quality of life for those affected by spinal cord injuries and disabilities in Miami, Florida.

 
TASH

This nonprofit organization advocates for equality for individuals with disabilities, and promotes social justice to create a community that is not segregated according to ability. The website offers information and resources, as well as updates on ongoing advocacy work, membership and conferences.

 

Testaverde Fund For Spinal Cord Injury

The Testaverde Fund for Spinal Cord Injury was  formed in 2003 as a means of raising funds for spinal cord injury research and providing community outreach and educational programs. The Testaverde Fund supports research being done by The Spinal Cord Injury Project at The State University of  New Jersey at Rutgers, under the leadership of Dr. Wise Young. In their labs, state-of-the art molecular, genetic and cellular research is conducted to provide hope for spinal cord injury survivors.

ThinkFirst Foundation

The ThinkFirst Foundation, provides injury prevention programs nation-wide to youth and teens. Formally known as the National Head and Spinal Cord Injury Prevention Program, ThinkFirst was established in 1986 to prevent traumatic through education, research and policy.  

The American Association of Neurological Surgeons (AANS) and the Congress of Neurological Surgeons (CNS) were also key in the creation of program due to their concern for their patients with brain and spinal cord injuries. These groups shared the belief that prevention is the only cure, and that neurosurgeons had the duty to try to prevent these traumatic injuries.  The program has many nation-wide local chapters sponsored by neurosurgeons committed to public education and injury prevention. The replicable program materials consist of a teen-oriented program, reinforcement materials, and a program to influence public attitudes and legislative policy. 

Through the Looking Glass

Through the Looking Glass (TLG) is a nationally recognized legal center that has pioneered research, training, and services for families in which a child, parent or grandparent has a disability or medical issue. Some issues include: parents with/DA and families in custody cases and parents with/DA in child welfare & civil rights implications. TLG is a disability community based nonprofit organization, which emerged from the independent living movement, and was founded in 1982 in Berkeley, California. Our mission is “To create, demonstrate and encourage non-pathological and empowering resources and model early intervention services for families with disability issues in parent or child which integrate expertise derived from personal disability experience and disability culture.”

Unite 2 Fight Paralysis

Unite to Fight Paralysis (U2FP) was established to unite and empower the international spinal cord injury community to cure paralysis through advocacy, education and support for research. U2PF’s advocacy is dedicated to spreading awareness on spinal cord injuries.  

 

United Nations Enable

This organization focuses on advocating for the “rights and dignity of persons with disabilities” on an international level. Here you’ll find updates on the latest international activity and statistics regarding disability. This is an excellent source for fact sheets on key issues in the worldwide disability community and resoures on the UN Intergovernmental Process and UN System.

 

United Spinal Association of Connecticut Chapter

The Mission of the Connecticut Chapter of the United Spinal Association is to support those with spinal related injuries or diseases and their families by being an advocate for their rights while serving as a resource to its members and the general public. The Association provides individual peer support and information to increase awareness of disabilities and prevention, and fundraising events to promote research and education. Quality of Life grants have been given to individuals for transportation needs, education expenses, additional wheelchair cushions, home and vehicle modification and adaptive equipment. The Chapter also provides the national Powerful Tools for Caregiver program. Special events and programs are also designed to support empowerment of its members.

United Spinal Association of Virginia

The United Spinal Association of Virginia’s mission is to enable people with spinal cord injuries and disease to achieve their highest level of health and independence. Services and programs aim to  improve quality of life by providing information, referral services, and peer-support. Explore the pull down options under Living With SCI on the top toolbar to explore resources and services to support individuals with spinal cord injuries or disease, their families, health professionals, policy makers and others interested in spinal cord injury.

 
 
World Institute on Disability

The mission of the World Institute on Disability (WID) in communities and nations worldwide is to eliminate barriers to full social integration and increase employment, economic security and health care for persons with disabilities. WID creates innovative programs and tools; conducts research, public education, training and advocacy campaigns; and provides technical assistance.

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