A groundbreaking survey of more than 33,000 households shows that the number of Americans living with spinal cord injury is 40 percent higher than previously thought. The survey, which was initiated by the Christopher & Dana Reeve Foundation, found that 1.275 million Americans have a spinal cord injury, and more than 5.6 million live with some form of paralysis. Earlier surveys had estimated that roughly 250,000 Americans had a spinal cord injury and 4 million had some form of paralysis.
“That means one in 50 Americans is living with some form of paralysis, whether caused by disease, spinal cord injury or neurological damage, said Peter T. Wilderotter, President and CEOof the Christopher & Dana Reeve Foundation. The number of people living with spinal cord injury and paralysis is growing, and these people are living longer and encountering more health-related and quality-of-life challenges as they age.
Major Findings
The University of New Mexico’s Center for Development and Disability conducted the study, which took more than three years. Anthony Cahill, Ph.D., principal investigator and Director of the Division of Disability and Health Policy at the Center for Development and Disability at the University of New Mexico’s School of Medicine, said that the extensive data set offered a wealth of information about this population:
- Roughly 1.9 percent of the U.S. population — 5,596,000 people — live with some form of paralysis.
- Spinal cord injury is more widespread than previously estimated. Roughly 1,275,000 people in the United States live with spinal cord injury — more than five times the number estimated in 2008.
- The leading causes of paralysis is stroke (29 percent), followed by spinal cord injury (23 percent) and multiple sclerosis (17 percent).
- Some minorities, such as African Americans and Native Americans, are more likely to report having paralysis.
- People living with paralysis are more likely to reside in lower-income households than others. Roughly 25 percent of households in which someone lives with paralysis have annual earnings of less than $10,000, compared with 7 percent of households in the general population.
One Degree of Separation
The Reeve Foundation recently released “One Degree of Separation,” which reflects the new data and sets out ways to improve quality of life for people living with paralysis. According to the report, current barriers to progress include:
- Insurance coverage and access to health care
- Lack of employment opportunities
- Insufficient caregiving support
- Need for more and better-trained personal attendants
Roughly 20 percent of the nearly 47 million Americans who are underinsured or not insured have disabilities. In formulating health care reform, the report advises disability stakeholders to focus on six areas to ensure that people with disabilities, including those with paralysis, are guaranteed adequate coverage and support:
1. Develop and provide resources for streamlined, centralized, and coordinated health care systems. Medical services for people with disabilities and chronic conditions need to be coordinated across health care providers, functions, activities, locations and time to increase effectiveness and efficiency, as well as to avoid duplication, misdiagnoses, and unnecessary hospitalization and costly interventions.
2. Lift or significantly raise caps on lifetime insurance benefits. Many insurance plans cap lifetime benefits at $2 million and do not index them for inflation. Given the exorbitant health care costs for people living with paralysis and their families — which often force them to turn to Medicare or Medicaid — lifetime caps should be at least $10 million and indexed to inflation.
3. Remove the two-year waiting period for Medicare coverage. Unlike older Americans, disabled beneficiaries must wait two years for coverage. A 2004 Commonwealth Fund study cosponsored by the Reeve Foundation found that people with catastrophic injuries — those 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.
4. Remove the current in-the-home rule. Medicare pays the cost of power wheelchairs only if people with disabilities prove that their chairs are needed in their homes. Many people with paralysis can get around in their homes with a manual wheelchair or a walker, but need a power chair to leave their homes for work or other activities.
5. Increase insurance coverage for outpatient physical therapy. Insurance policies currently do not differentiate between severe injuries — such as spinal cord injuries — and sprained ankles. So most insurance companies provide the same number of physical therapy sessions annually for both. More focus should be on the specific injuries and treatment plans should reflect that accordingly.
6. 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.
The Christopher and Dana Reeve Paralysis Act
President Obama signed the Christopher and Dana Reeve Paralysis Act into law on March 30. The act calls for the establishment of the Christopher Reeve Paralysis Consortia at NIH to promote collaboration among scientist, thereby speeding up discoveries of better interventions and cures. It will expand rehabilitation research to improve daily function, prevent secondary complications and develop better assistive technology. The law also authorizes program development and expansion at the CDC, such as grants to nonprofit health and disability organizations for improving public education and access to services, integrating life with paralysis into society and coordinating state services.
About the Reeve Foundation
The Christopher & Dana Reeve Foundation is dedicated to curing spinal cord injury by funding innovative research, and improving the quality of life for people living with paralysis through grants, information and advocacy. For more information, please visit their website atwww.ChristopherReeve.org or call 800-225-0292.