- 1. Being or Becoming a Self-advocate
- 2. How can I learn to be a health care self-advocate?
- 3. Health Care Self Advocacy
- 3.1. Spinal Cord Advocates
- 3.2. Cure Paralysis Now Advocacy Group
- 3.3. Families USA Advocacy Tools
- 3.4. Patient Advocate Foundation
- 3.5. Your Rights as a Patient with SCI
- 3.6. Legal Rights of the Catastrophically Ill and Injured: A Family Guide
- 3.7. Importance of staying healthy and active
- 3.8. Protection and Advocacy (P&A) System
- 3.9. Sample justification letter
- 3.10. In the Face of Pain Advocacy Toolkit
- 3.11. National Association of Healthcare Advocacy Consultants
- 3.12. Tips for Maintaining a Healthy Lifestyle
- 4. Your civil rights
- 4.1. ADA Watch
- 4.2. Americans Disabled for Attendant Programs Today (ADAPT)
- 4.3. American Association of People with Disabilities
- 4.4. Center for Self Determination
- 4.5. Department of Justice ADA page
- 4.6. Disability Law Handbook
- 4.7. Disability Rights Advocates
- 4.8. National Organization on Disability
- 4.9. Legal Services
- 4.10. On Line DOJ Complaint Form
- 4.11. Remedies Under the ADA
- 4.12. Toll-Free ADA Information Line
- 5. Miscellaneous Resources
1. Being or Becoming a Self-advocate
1.1. What is a self-advocate?
A good self-advocate is a person who learns to direct one's own life with skills that can support or promote a particular cause, effect change and achieve best outcomes.
1.2. What is a health care self-advocate?
A health care self-advocate is a person who proactively seeks health resources that provide appropriate care and services and understands and practices the behaviors that lead to a healthy lifestyle.
1.3. Defining Self Determination
See Center for Self-Determination for definitions and useful apps
"Support at Home" is a video produced by Community Living Services and Futures HealthCore. It focuses on how people are finding creative and unique ways to care for their loved ones at home.
"Support at Home", which aired on CBS Detroit Channel 62 on Saturday, January 26th at 7:00 p.m., highlights people with intellectual and developmental disabilities, seniors and veterans and shows how family and friends can find resources as they face the challenge of caring for their loved ones.
This educational video also has exclusive interviews with prominent leaders, Governor Rick Snyder, Senator Debbie Stabenow, Oakland County Executive L. Brooks Patterson and Michigan Department of Community Health Director Jim Haveman.
1.4. Conversations about Advocacy (Video)
NW Regional SCI System recently produced a 64 minute streaming video about self advocacy. Participants, sharing their experiences and encouragement in this excellent video, are four persons living with SCI.
1.5. The Advocacy Center
The Advocacy Center provides consumer-driven services to support people with disabilities and their families in achieving their goals.
1.6. Tri-State Advocacy Project (Nationwide)
We are advocates who have personally faced the challenges of having a family member with a catastrophic injury. The major obstacle that we faced and that you may be currently dealing with is not knowing how to get the help that you need. Calling government agencies can be discouraging and not knowing the questions to ask can make the process even more frustrating. Our goal is to help navigate you through this process:
Identify health insurance benefits and recognize any areas where coverage may be inadequate to meet the patient's needs
Evaluate the eligibility for government benefits (Medical Assistance, Medicaid Waivers and Social Security benefits) and help families with the application process
Seek out community resources for services not covered by insurance or government programs
Disclaimer: We are not attorneys or medical professionals and cannot provide either legal or medical advice.
1.7. Consortium for Citizens with Disabilities
The Consortium for Citizens with Disabilities is a Coalition of national consumer, advocacy, provider and professional organizations headquartered in Washington, D.C. Since 1973, the CCD has advocated on behalf of people of all ages with physical and mental disabilities and their families. CCD has worked to achieve federal legislation and regulations that assure that the 54 million children and adults with disabilities are fully integrated into the mainstream of society.
CCD does this by:
Identifying and researching public policy issues, developing testimony and policy recommendations and encouraging innovative solutions to public policy concerns.
Educating members of Congress in an effort to improve public policies and programs that foster independence, productivity, integration and inclusion of people with disabilities.
Encouraging people with disabilities and their families to advocate for themselves and coordinating grass roots efforts to support these advocacy efforts.
1.8. Become Your Child's Advocate
Advocacy and Awareness tips from the Illinois Assistive Technology Program
Resources for Employers of People with Disabilities
When it comes to doing business, inclusion of workers with disabilities offers a competitive edge. By incorporating people with disabilities into their human capital strategies, employers expand their pool of talent, skills and creative business solutions. Resources below illustrate how workplace practices that include people with disabilities benefit everyone and make good business sense.
Business Case for Hiring People with Disabilities
Workplace Accommodations: Low-Cost, High- Impact
Business Sense (monthly newsletter)
Disability Employment Policies in Practice
Creating an Inclusive Culture
Organizations that value and appreciate each person or individual differences and experiences benefit from diverse perspectives. Creating such an inclusive culture isn't difficult, but does require some forethought. The resources below can foster an inclusive work environment that is flexible and open to the talent of all qualified individuals, including those with disabilities.
What can YOU do? Campaign for Disability Employment
National Disability Employment Awareness Month
Add Us In (small business program)
Recruiting and Hiring
The goal of the recruitment and hiring process is to attract and identify individuals who have the best mix of skills and attributes for the job available. Ensuring that all qualified individuals -- including those with disabilities can participate in the process is critical to achieving this goal. The resources below can assist in understanding how to be disability inclusive in recruiting and hiring.
Employer Assistance and Resource Network (EARN)
AskEARN.org or 1-855-275-3276 (Voice/TTY)
Workforce Recruitment Program (WRP)
Job Accommodation Network (JAN)
AskJAN.org or 1-800-526-7234 (voice) or 1-877-781-9403(TTY)
Veterans Hiring Toolkit
National Resource Directory
One-Stop Career Centers
servicelocator.org or 1-877-USA-JOBS
Vocational Rehabilitation Agencies
Retaining and Advancing Valued Employees
Employers and employees both benefit from a work environment that facilitates the retention of all skilled, qualified workers through effective job accommodations for employees with disabilities. These resources can assist in understanding how to effectively retain talents of qualified employees with disabilities and help them advance and achieve workplace success.
Job Accommodation Network (JAN)
AskJAN.org or 1-800-526-7234(voice) or 877-781-9403 (TTY)
Employer Assistance and Resource Network (EARN)
AskEARN.org or 1-855-275-3276 (voice/TTY)
Reprinted (by Illinois Assistive Technology Program) with permission from the 11/12 issue of the SCIL Advocate, the Springfield Center for Independent Living newsletter
2. How can I learn to be a health care self-advocate?
2.1. Know and understand your medical condition (the most important step!)
You should know:
Level of your injury, [e.g. C7, T2, C4/5 etc.]
Whether your injury is complete or incomplete
Whether you were given a high-dose steroid at the time of your injury
You should understand
Function and capabilities associated with your injury level
Difference between a complete and incomplete injury
Know the risks for secondary conditions and complications; readily discuss health management with your doctor to avoid or minimize risk factors
Know your family medical history
Know, understand and carry AD management information with you at all times if you are at risk for Autonomic Dysreflexia (AD) [for injury levels T 6-10 and above]
Seek to receive health care from providers who are familiar with SCI or are willing to consult with a physician with SCI expertise
2.2. A Health Care SelfAdvocate Will:
Maintain a healthy life style that includes good nutrition and hygiene, adequate fluid intake, exercise within the limits of the level of your injury
Avoid smoking and minimize the intake of alcoholic beverages
Seek health care services that are accessible including doors and parking, examination table and other equipment for medical assessment
Readily appeal any denial of reimbursement for services and/or durable medical equipment
3. Health Care Self Advocacy
3.1. Spinal Cord Advocates
Spinal Cord Advocates - a website dedicated to grassroots advocacy on issues that affect people with spinal cord Injury and disorders. This website is a product of the unique collaboration between two of the nation’s leading nonprofit membership organizations dedicated to improving the quality of life of all Americans with spinal cord injuries and disorders - United Spinal Association and NSCIA.
3.2. Cure Paralysis Now Advocacy Group
CureAdvocacy is a grassroots organization that believes a cure for paralysis can be achieved in this decade and has vowed to carry and fill a void that occurred following the death of Christopher Reeve.
CureAdvocacy is a grassroots organization that believes a cure for paralysis can be achieved in this decade. Our mission is to:
Educate the public about the cruel realities of living with paralysis
Deliver the message that paralysis strikes randomly and without warning, robbing its victims of abilities and dreams in a split second
Raise public awareness of viable cure options
Promote the cure message with a variety of legislative and media outreach strategies
Why Cure Advocacy? Without activism:
The United States would still be under British rule;
African Americans would still live in slavery's chains.
Women would not have the right to vote.
People with Disabilities would still be institutionalized.
Rights and Freedoms are won through activism. The time is NOW to fight for:
The Paralyzed Community's Bill of Rights
We hold these truths to be self-evident:
All humans are created equal and are entitled to certain unalienable Rights, including Life, Liberty, Independence and the pursuit of Happiness;
Governments are instituted among humankind to secure these rights, and if they fail, it is the Right of the people to alter or abolish such Governments in order to effect Safety and Happiness;
Spinal Cord Injury robs its victims of Liberty and Independence; the Search for a Cure is their Pursuit of Happiness.
Let Your Voice Be Heard
Deliver the message that SCI can happen to you or a loved one in a heartbeat
Educate the public and our legislators about the desperate need for a cure
Spread the news about the many promising cure therapies that need funding
Work with other organizations to separate fact from fiction in the debate over stem cell therapies
3.3. Families USA Advocacy Tools
This section of the Families USA Web site features guides, tools and resources for grass roots advocacy.
Families USA is a national nonprofit, non-partisan organization dedicated to the achievement of high-quality, affordable health care for all Americans. Working at the national, state, and community levels, we have earned a national reputation as an effective voice for health care consumers for 25 years. We:
Manage a grassroots advocates' network of organizations and individuals working for the consumer perspective in national and state health policy debates. Membership in the Health Action Network is free. Click here to subscribe to our Health Action Network. The network distributes timely information and mobilizes people for action when appropriate.
Act as a watchdog over government actions affecting health care, alerting consumers to changes and helping them have a say in the development of policy.
Produce highly respected health policy reports describing the problems facing health care consumers and outlining steps to solve them. (See our Publications List).
Conduct public information campaigns about the concerns of health care consumers using sophisticated media techniques that reach many millions of Americans through television, radio, newspaper, and other print outlets.
Serve as a consumer clearinghouse for information about the health care system.
Subscribe to our Health Action Network and get timely information about health policy issues via e-mail.
Work in concert with a wide range of organizationsfrom business to consumer to health provider organizationstoward the achievement of health care that is high-quality and affordable for all Americans.
Provide training and technical assistance to, and work collaboratively with, state and community-based organizations as they address critical health care problems in their communities and state capitals.
3.4. Patient Advocate Foundation
Patient Advocate Foundation, Patient Services provides patients with arbitration, mediation and negotiation to settle issues with access to care, medical debt, and job retention related to their illness. Patient Advocate Foundation offers patient services by telephone, email, or web chat to those in need that fall under the scope of our services. Our professional staff members intervene by making conference calls when needed, assisting with appeals to insurance companies or the Social Security Administration, negotiating with providers in medical debt situations or securing access to care. Our staff strive for positive resolutions whenever possible.
Spanish language services available.
Headquarters: 421 Butler Farm Road, Hampton, VA 23666 Phone: (800) 532-5274 - Fax: (757) 873-8999
3.5. Your Rights as a Patient with SCI
Protect yourself from substandard care by knowing your rights and being proactive. Read this article from NSCIA
3.6. Legal Rights of the Catastrophically Ill and Injured: A Family Guide
A comprehensive resource guide written by Joseph Rpmano, Esq that will assist families and medical providers in identifying benefits for seriously ill and injured individuals.
3.7. Importance of staying healthy and active
National Center on Physical Activity and Disability offers guidelines and specific factsheets for staying active as a person with a disability
3.8. Protection and Advocacy (P&A) System
P&A agencies have the authority to provide legal representation and other advocacy services, under all federal and state laws, to all people with disabilities (includes ‘when to contact' and links to individual state offices).
3.9. Sample justification letter
When asking a Health Insurance Agency to cover the cost of assistive technology a justification letter will need to be submitted. This outlines important steps to achieve reimbursement; can be applied to other needs seeking reimbursement
3.10. In the Face of Pain Advocacy Toolkit
The In the Face of Pain advocacy toolkit is a resource created to provide you with a series of tools to advocate for people in pain.
3.11. National Association of Healthcare Advocacy Consultants
Health care professionals recognize the importance of the consumer having a healthcare advocate when ill. A recently formed organization, National Association of Healthcare Advocacy Consultants, now has a public, national list of health care advocates.
3.12. Tips for Maintaining a Healthy Lifestyle
Steps to embrace health and wellness
4. Your civil rights
4.1. ADA Watch
ADA Watch is a project of National Coalition for Disability Rights
4.2. Americans Disabled for Attendant Programs Today (ADAPT)
ADAPT is a national grass-roots community that engages in activities to assure the civil and human rights of people with disabilities to live in freedom
4.3. American Association of People with Disabilities
The American Association of People with Disabilities (AAPD) is a national voice for change in implementing the goals of the Americans with Disabilities Act (ADA).
4.4. Center for Self Determination
Center for Self Determination is a nonprofit organization whose mission is to empower persons with disabilities and their families to directly manage their own lives and resources including public funds they may receive.
4.5. Department of Justice ADA page
Home page that links to many government and other programs
4.6. Disability Law Handbook
Disability Law Handbook -order hard copy for $5
Disability Law Handbook-download for free
4.7. Disability Rights Advocates
DRA is a non-profit law firm dedicated to securing the civil rights of people with disabilities. DRA advocates for disability rights through high-impact litigation, as well as research and education.
4.8. National Organization on Disability
The mission of the National Organization on Disability (NOD) is to expand the participation and contribution of America's 54 million men, women and children with disabilities in all aspects of life.
4.9. Legal Services
NSCIA Legal Services section
Access to high quality and affordable legal services is an issue for nearly anyone at some point. Locating and evaluating the right provider of these services is often a challenging, even daunting process.
While the decision to hire legal counsel must be your own, NSCIA hopes to provide information and resources to help NSCIA members and their families make the best possible decision in finding and evaluating legal services in the following key areas:
Content on this web site is for informational and educational purposes only. No information on this site should be taken as legal advice. NSCIA makes no endorsement of any of the firms or individuals who might be listed in the content of this site, or who advertise on this site.
4.10. On Line DOJ Complaint Form
DOJ Introduces Online ADA Complaint Form
The U.S. Department of Justice (DOJ), which enforces key mandates of the ADA, recently launched an online form for filing complaints electronically under the law. The ADA bans discrimination based on disability in employment, state and local government services, public accommodations, commercial facilities, transportation, and telecommunications. It covers a wide range of disability, from physical conditions affecting mobility, stamina, sight, hearing, and speech to conditions such as emotional illness and learning disorders. DOJ regulates and enforces requirements that apply to state and local governments, public accommodations, and commercial entities, including standards for buildings and facilities that are based on guidelines issued by the Board.
Those who wish to file an ADA complaint with DOJ can use the new web-based form which is available on DOJ's website at www.ada.gov/complaint. For further information or to receive a paper complaint form by mail, contact DOJ (800) 514-0301 (v) or (800) 514-0383 (TTY).
4.11. Remedies Under the ADA
Remedies under the ADA
The Americans with Disabilities Act (ADA) is a complex civil rights law that may award different remedies depending on the discrimination that occurred. Some remedies are spelled out in the Act explicitly while others are established by case law interpreting the ADA and its sister law, Section 504 of the Rehabilitation Act. For a potential plaintiff, the available remedies must be considered before filing suit. For the potential defendants, the potential liability discourages violations of the ADA. This e-bulletin will discuss what remedies are available under the ADA.
4.12. Toll-Free ADA Information Line
The U.S. Department of Justice provides information about the Americans with Disabilities Act (ADA) through a toll-free ADA Information Line. Call to obtain answers to general and technical questions about the ADA and to order technical assistance materials: 800-514-0301 (voice) 800-514-0383 (TTY)
5. Miscellaneous Resources
5.1. Accessible parking regulations from DOJ
This ADA Business Brief provides key information about how to create accessible car and van spaces and how many spaces to provide when parking lots are restriped.
5.2. Parking Mobility (APPS)
Parking Mobility (With APPS for Smartphones)
Disabled Parking & Mobility Solutions
Engaging, Enforcing & Educating Since 2009
Engage and educate your community to effectively address the daily #1 health, safety and access issue facing people with disabilities
Education-focused, 501(c)(3) nonprofit founded and operated by the disability community
A solution that seamlessly integrates with your existing systems
Partner with us today to implement, recruit and manage your disability parking solution!
Parking Mobility Headquarters
3800 North Lamar Blvd, Suite 730-175 Austin, Texas 78756 (512) 348-7775 Fax: (512) 870-9353
Contact by email (form)
5.3. File complaint against a hospital
The Joint Commission is an independent, not-for-profit organization. The Joint Commission accredits and certifies nearly 21,000 health care organizations and programs in the United States. Joint Commission accreditation and certification is recognized nationwide as a symbol of quality that reflects an organization's commitment to meeting certain performance standards.
Their Mission: To continuously improve health care for the public, in collaboration with other stakeholders, by evaluating health care organizations and inspiring them to excel in providing safe and effective care of the highest quality and value.
Vision Statement: All people always experience the safest, highest quality, best-value health care across all settings.
File a Complaint - for telephone information: (800) 994-6610, available weekdays, 8:30 a.m. to 5 p.m., Central Time.
5.4. Financial Impact of Disability
Disability: Are You Financially Prepared? from the Council of Disability Awareness
5.5. Getting a "Yes" From Your Insurance Company
Illinois Assistive Technology Program identifies the essential steps to achieve reimbursement
5.6. Paralyzed Veterans of America on advocacy and rights
Through Paralyzed Veterans of America's Advocacy Program, Paralyzed Veterans offers up-to-date disability rights information and resources on this website.