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Disability Advocates

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In the United States of America, individuals with spinal cord injuries and other disabilities are protected by a range of laws aimed at safeguarding and promoting their health, welfare, and independence. These legislative measures have been established thanks to the efforts of disability advocacy groups nationwide. Explore this section to find programs, agencies, resource centers, and special interest groups dedicated to advocating for accessibility, inclusion, and equality for individuals living with spinal cord injuries.

Browse through the resources below to discover various Disability Resource Centers that serve as hubs of disability-specific information. These include sources for health and patient advocates who can assist you in navigating the complexities of the healthcare system. Learn about self-advocacy across a spectrum of needs, including medical, psychological, social, emotional, recreational, and vocational. Gain insights into finding healthcare providers and identifying additional support through community-based disability groups.

Additionally, this section features statewide disability action centers and alliances committed to promoting and safeguarding civil rights for people with disabilities. These entities encompass statewide Centers for Independent Living (CIL), chapters of the National Spinal Cord Injury Association, Family Caregiver Alliances, and foundations supporting spinal cord injury recovery. These groups offer transition support and counseling for housing, home-based services, personal assistants, and other legal services. Centers for Independent Living and Spinal Cord Associations also administer peer mentoring programs for youth and adults.

Access Living

Access Living is a nonprofit organization in Chicago, IL whose aim is to empower the disability 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.

 

ADAPT

ADAPT is a national grassroots community that organizes disability rights activists to engage in nonviolent direct action to assure the civil and human rights of people with disabilities to live in freedom.

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.

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.

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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.

 

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.

 
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.

 
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 Assistance to find support.

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 and new legislative initiatives, as well resources and toolkits on disability policy. 

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

The National Disability Rights Network’s 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 people with disabilities in the United States. 

National Resource Directory

The National Resource Directory (NRD) connects Wounded Warriors, Service Members, Veterans, their families, and caregivers to programs and services that support them. The NRD is hosted, managed, maintained, sustained and developed by the Defense Health Agency’s Recovery Coordination Program.

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. Start by selecting How to Use this Site.

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.

Paralyzed Veterans of America

The PVA’s mission is to improve the quality of life of its members by advocating for improved health care, research, education and awareness of disability rights and programs for veterans. The website focuses primarily on injured veterans; however, the information on disability advocacy and sports and recreation applies to veterans and non-veterans alike.

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, and disability. In addition, the Rick Hansen Foundation helps improve accessibility and quality of life through a variety of community programs. 

 

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 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.

 

ThinkFirst – National Injury Prevention 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 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, policymakers 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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