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Spinal Cord Injury Paralysis Resource Center

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One Degree of Separation:
Paralysis and Spinal Cord Injury in the United States

Recommendations: 5 Concrete and Actionable Steps

The Christopher & Dana Reeve Foundation has long recognized that finding cures and improving the quality of life for people living with paralysis and spinal cord injury requires working on several fronts: research, information and education, and advocacy. Since its inception, it has served as one of the most recognized and respected advocates for this issue in the United States and internationally.

Using this knowledge -- and the expertise of an extensive network of health care providers, scholars, community leaders, scientists, business leaders, people living with paralysis and others with whom the Reeve Foundation partners on this work -- the Foundation developed what it believes to be the most important recommendations for policymakers and others to consider seriously in all discussions about health care policy and programs.

These recommendations provide policymakers with concrete and actionable steps that will be crucial to remove obstacles for people living with a disability, such as paralysis; reduce the crushing health care costs they often face; and expanding and supporting research that will find cures and better treatments for them.


  1. Implement the Christopher and Dana Reeve Paralysis Act (CDRPA).
  2. Improve the quality of life for people with disabilities by reforming health care.
  3. Provide better educational opportunities to Americans with disabilities.
  4. Increase employment among people with disabilities and institute protections for them from workplace discrimination.
  5. Support independent, community-based living for Americans with disabilities.

1.  Implement the Christopher and Dana Reeve Paralysis Act (CDRPA).
The CDRPA, the first national public health bill to directly address paralysis, was signed into law by President Obama on March 30, 2009. Congress must now fund this legislation and work with administration officials to implement it by:

  • Establishing the Christopher Reeve Paralysis Consortia at the National Institutes of Health (NIH) to promote collaboration among scientists doing similar work in multiple fields to enrich understanding and speed up the discovery of better interventions and cures;
  • Expanding rehabilitation research, including clinical trials, to improve daily function for people with paralysis, prevent secondary complications, and develop better assistive technology;
  • Developing and expanding programs at the Centers for Disease Control & Prevention (CDC), such as grants to non-profit health and disability organizations for educating the public about paralysis, improving access to services, integrating life with paralysis into society, and coordinating services within each state.

2.  Improve the quality of life for people with disabilities by reforming health care.
Nearly 47 million Americans are currently underinsured or not insured, 20 percent of whom are people with disabilities. People with disabilities also tend to earn below-average incomes but incur significantly more health care expenses than Americans without disabilities. According to the U.S. Census Bureau, Current Population Survey, 2008 Annual Social and Economic Supplement, 27.1% of the U.S. population's annual household income is $25,000 or less. The paralysis population survey indicates 59.2% of annual household incomes for people living with paralysis is $25,000 or less, and 62.7% of the annual household incomes for people with spinal cord injuries is $25,000 or less.

As the debate around health care reform heats up, there are six specific areas that will be important to focus on to ensure that people with disabilities, including those with paralysis, are guaranteed adequate coverage and support:

  • Develop and provide resources for streamlined, centralized, and coordinated health care systems. Medical services for people with disabilities and chronic conditions (who often experience a unique confluence of secondary and complex conditions) must be coordinated across health care providers, functions, activities, locations, and time to increase effectiveness and efficiency, as well as to prevent duplication, misdiagnoses, and unnecessary hospitalization and costly interventions.
  • Lift or significantly raise caps on lifetime insurance benefits. Many insurance plans now cap their lifetime benefits at $2 million and/or do not index them for inflation. Given the exorbitant health care costs that confront people living with paralysis and their families -- which often force them to turn to Medicare or Medicaid to pay them -- benefit lifetime caps should be raised to at least $10 million and indexed to inflation.
  • Remove the two-year waiting period for Medicare coverage. Unlike older Americans, who typically enroll and become eligible for coverage within months of turning age 65, disabled beneficiaries must wait two years before their coverage takes effect. A 2004 Commonwealth Fund study that the Reeve Foundation co-sponsored found that people with catastrophic injuries, who can least afford waiting for treatment, either forgo medications and other medical treatments during this waiting period or go broke trying to pay for their own coverage.
  • Remove the current in-the-home rule. Medicare currently pays for the cost of power wheelchairs only if people with disabilities can prove that their chairs are needed in their homes. Many people with paralysis can achieve mobility using a manual wheelchair or a walker at home, but need power for mobility outside the home. Without access to power wheelchairs, they are unable to leave their homes at all for work or other activities.
  • Increase insurance coverage for outpatient physical therapy. Insurance policies currently do not differentiate between severe injuries -- such as spinal cord injuries -- and injuries such as sprained ankles. As a result, the number of physical therapy sessions insurance provides on an annual basis is the same for both. More attention needs to be paid to the specific types of injuries so that treatment plans are developed accordingly and, in turn, insurance coverage is tailored to them, rather than using a blanket approach to injuries that can vary widely in how they are treated.
  • Support family caregivers. While Congress recognized the importance of respite care for family caregivers by passing the Lifespan Respite Care Act in 2006 (which authorizes $289 million in competitive grant funding to states to train volunteers and provide other services to an estimated 50 million family caregivers nationwide), it must follow through and fully fund these programs.

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3.  Provide better educational opportunities to Americans with disabilities
Provide full federal funding for the Individuals with Disabilities Education Act (IDEA), rather than forcing states and local school districts to shoulder the burden as they do now.

  • Support universal screening and early intervention such as scientifically-based literacy instruction and instruction on the use of adaptive and educational software for children with disabilities.
  • Authorize a comprehensive study of students with disabilities and issues relating to transition to work and higher education.

4.  Increase employment among people with disabilities and institute protections for them from workplace discrimination.
Protect and keep, rather than eliminate, Medicare coverage for people with disabilities who are returning to the workforce.

  • Establish workplace programs that include disability as part of diversity training and education programs.
  • Create and support incentives for employers to offer accessible transportation to work for employees with disabilities.
  • Offer more vocational training and placement support for people with disabilities.

5.  Support independent, community-based living for Americans with disabilities.
Pass the Community Choice Act, which would allow Americans living with severe disabilities the opportunity to continue to live at home, rather than in institutions (which the Supreme Court has recently ruled as "unnecessary segregation" and "discrimination based on disability").

One Degree of Separation

A Reeve Foundation Fact Sheet on Pediatric SCI (PDF)

A Reeve Foundation Fact Sheet on Adjustment to SCI (PDF)

A Reeve Foundation Fact Sheet on Aging with SCI (PDF)

A Reeve Foundation Fact Sheet on SCI Autobiogs or Biogs (PDF)

A Reeve Foundation Fact Sheet on SCI Chat Rooms (PDF)

A Reeve Foundation Fact Sheet on SCI Research (PDF)

A Reeve Foundation Fact Sheet on SCI Tutorial 101 (PDF)

A Reeve Foundation Fact Sheet on SCI Videos (PDF)

A Reeve Foundation Fact Sheet on Brain and Spinal Cord Tumors (PDF)

A Reeve Foundation Fact Sheet on Deep Vein Thrombosis (PDF)

Arkansas Spinal Cord CommissionThe mission of the Arkansas Spinal Cord Commission is to administer a statewide program to identify and meet the unique and lifelong needs of people with spinal cord disabilities in the state.

CareCure CommunityCareCure Community features a SpinalNurse bulletin board with informed comments on matters of the bowel, and all issues of paralysis.

Canadian & American Spinal Research OrganizationPromotes and supports funding research to ultimately find a cure for paralysis. Also publishes journal of latest research they fund. Call (800) 361-4004 or use the link above.

Canadian Paraplegic AssociationAssists people with spinal cord injuries and other disabilities to achieve individuality, self-reliance and full community participation. Call (613) 723-1033 or use the link above.

Craig HospitalWith funding from the US Department of Education's National Institute on Disability & Rehabilitation Research, has developed educational materials to help people with spinal cord injuries live in the community maintain their health. Topics include skin care, exercise, heart disease, weight control, alcohol abuse and conditions related to the aging body. Use the link above and click on SCI Health and Wellness.

Determined 2 HealProvides helpful information for the newly spinal cord injured.

FacingDisability.comFacing Disability is a web resource with more than 1,000 videos drawn from interviews of people with spinal cord injuries, their families, caregivers and experts. I know that this is a lot to ask, but we'd be so grateful for your help. I'm looking forward to discussing this link with you, and to answering any questions you may have.

Kosair Charities Center for Pediatric NeuroRecovery at the University of LouisvilleThe Kosair Charities Center for Pediatric NeuroRecovery provides activity-based therapies to promote recovery from neurologic injury in children; conducts research to enhance recovery; and trains families, practitioners and scientists to maximize recovery and improve the quality of life for children and their families. In short, we are here to help kids kick paralysis and through science have every reason to hope.

Model Systems CentersA federally funded program of 14 specialty medical and/or rehabilitation centers across the US. The SCI Care System collects and submits acute, rehabilitation and follow-up (annual, long-term post-discharge) data on SCI patients who received care in the these centers following injury.

The Miami Project to Cure ParalysisThe Miami Project to Cure Paralysis has studied functional electrical systems for exercise.

The National Spinal Cord Injury Statistical Center (NSCISC)NSCISC supervises and directs the collection, management and analysis of the world's largest spinal cord injury database. Headquartered at the University of Alabama, Birmingham.

National Spinal Cord Injury Association (NSCIA)At NSCIA, we educate and empower survivors of spinal cord injury and disease to achieve and maintain the highest levels of independence, health and personal fulfillment. We fulfill this mission by providing an innovative Peer Support Network and by raising awareness about spinal cord injury and disease through education.

New York Online Access to Health (N.O.A.H)Offers information and links related to spinal cord and head injury treatment, rehabilitation, and children. Materials in Spanish.

Neuroscience for KidsOffers an understandable look at the segments of the spinal cord; from University of Washington.

Paralyzed Veterans of America, in support of The Consortium for Spinal Cord Medicine, offers authoritative clinical practice guidelines for bladder management. Consumer guides are available to download.

SpineUniverseAt SpineUniverse our goal is to help patients and their families understand their back or neck problems. In clear, straightforward language we aim to explain what causes spinal problems and how they can be treated. We are committed to ensure that all of the information we present is trustworthy and of the highest quality.

Spinal Cord Injury Information NetworkThe Spinal Cord Injury Information Center features clinical information about bowel management and all other medical issues of paralysis.

United Spinal AssociationOur mission is to improve the quality of life of all Americans living with spinal cord injuries and disorders (SCI/D), including multiple sclerosis, spina bifida, Lou Gehrig’s Disease (ALS), and post polio.

U.S. Department of Veterans Affairs Fact Sheet: VA and Spinal Cord InjuryOf the more than 250,000 Americans with serious spinal cord injuries and disorders, about 42,000 are veterans eligible for medical care and other benefits from the Department of Veterans Affairs (VA).

Paralysis Resource Center The Reeve Foundation Paralysis Resource Center Information Specialists are reachable business weekdays, Monday through Friday, toll-free at 800-539-7309 from 9:00 am to 5:00 pm ET. You may also schedule a call or send a message online.

Reeve Foundation Online Paralysis Community Connecting people living with paralysis, families, friends and caregivers so we can share support, experience, knowledge, and hope.

Quality of Life Grants DatabaseFind resources within the PRC Quality of Life Grants Database. Search by Zip Code, State or an Entire Category.

Library Books and VideosFind resources within the PRC library catalog.

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The Reeve Foundation Paralysis Resource Center Information Specialists are reachable business weekdays, Monday through Friday, toll-free at 800-539-7309 from 9:00 am to 5:00 pm Eastern U.S. Time. International callers use 973-467-8270. You may also schedule a call or send a message online.

This project was supported, in part by grant number 90PR3001, from the U.S. Administration for Community Living, Department of Health and Human Services, Washington, D.C. 20201. Grantees undertaking projects under government sponsorship are encouraged to express freely their findings and conclusions. Points of view or opinions do not, therefore, necessarily represent official Administration for Community Living policy.