WASHINGTON, April 21 /PRNewswire-USNewswire/ -- A survey of over 33,000 households released today shows that 40 percent more Americans live with paralysis and over five times the number of Americans live with spinal cord injury than previously estimated. Specifically, the survey shows that 1.275 million have had a spinal cord injury and over 5.6 million Americans live with some form of paralysis. The highest previous estimates were 250,000 and roughly four million, respectively.
"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 CEO of the Christopher & Dana Reeve Foundation. "Someone you know is living with paralysis -- a family member, a friend or a work colleague."
The study was initiated by the Christopher & Dana Reeve Foundation and conducted by the University of New Mexico's Center for Development and Disability. More than 30 experts from 14 leading universities and medical centers and the U.S. Centers for Disease Control and Prevention set the parameters for the survey. The development of the survey, acquisition and analysis of the data took over three years.
"This is the first population-based survey to measure the national prevalence of paralysis," said Anthony Cahill, Ph.D., principal investigator for the study and Director of the Division of Disability and Health Policy in the Center for Development and Disability at the University of New Mexico's School of Medicine. "The enormous data set offers a wealth of information about this population."
- Paralysis is dramatically more widespread than previously thought. Approximately 1.9 percent of the U.S. population, or 5,596,000 people reported they were living with some form of paralysis, defined by the study as a central nervous system disorder resulting in difficulty or inability to move the upper or lower extremities. This is about 40 percent more Americans living with paralysis than previously estimated (~four million).
- Spinal cord injury is also more prevalent than previously estimated. Data indicate that 1,275,000 people in the United States are living with spinal cord injury -- more than five times the number of Americans previously estimated in 2008 (255,702).
- We are more certain about causes of paralysis. The leading cause of paralysis was stroke (29 percent), followed by spinal cord injury (23 percent) and multiple sclerosis (17 percent).
- Paralysis appears to be disproportionately distributed among some minority communities -- such as African Americans and Native Americans -- but not all. Hispanics who are living with paralysis represent approximately the same percentage as those who report being Hispanic in the United States census.
- People living with paralysis have households with lower incomes. Household income for those with paralysis is heavily skewed towards lower-income brackets and is significantly lower than household income for the country as a whole. Roughly 25 percent of households with a person who is paralyzed earn less than $10,000 per year, compared with only seven percent of households in the general population.
Public Health Implications
"This study reveals important findings about the prevalence of paralysis and spinal cord injury, but we must also remember that behind each of these statistics are real people, who along with the rest of their families are facing urgent needs," says Dr. Edwin Trevathan, Director of the CDC's National Center on Birth Defects and Developmental Disabilities. "This is a crucial first step to providing appropriate public health supports for this community in understanding how many people live with the condition, who they are, and what they need. At the CDC it is only when we apply our knowledge to improve the lives of people from before birth and throughout their lives that we can achieve our long-term objectives."
Findings about socio-economic status are particularly concerning. Basic supports are available -- such as ramps and in-home caregivers -- that allow those living with spinal cord injury and paralysis to continue to work and to improve their quality of life. In addition, rehabilitation therapies and medical interventions that restore functionality in some patients exist. Yet these therapies and quality of life supports are all-too-often unavailable, often due to lack of adequate health insurance or limited geographic access.
"The healthcare system is often penny-wise and pound-foolish," said Joseph Canose, Vice President for Quality of Life at the Reeve Foundation. Canose directed the project on behalf of the Reeve Foundation. "For example, many health insurance companies will not pay for a $400 wheel chair seat cushion, but they will pay $75,000 to $100,000 to treat the pressure sores caused by the wrong cushion. The more we can do to help people live independently -- to get an education, to work and to live fulfilling lives -- the more our entire society benefits."
"Seventeen years after the accident that led to my paralysis, my life is full, personally and professionally. I have a wonderful family and a successful career," said Alan T. Brown, a Florida business executive. "Yet I depend on help with nearly every aspect of daily life. Recently my long-time health insurance carrier discontinued my medical coverage -- meaning that the in-home care necessary every day is now limited to 20 days a year."
Researchers collected and analyzed data from more than 33,000 randomly sampled households with a telephone survey in the United States to document the prevalence of paralysis, including spinal cord injury. With the exception of annual surveys sponsored by the federal government (such as the Behavioral Risk Factor Surveillance Survey (BRFSS) or the National Health Interview Survey), this is the largest population-based sample of any disability ever conducted of which we are aware.
The study comprised four components:
- Assessment of existing surveys, registries, and data collection efforts. A team from the University of Kansas conducted this assessment to determine how paralysis was defined by different organizations and surveys, as well as how data about paralysis had previously been collected. These findings were published in the peer-reviewed publication "Disability and Health Journal" in July 2008.
- A "consensus conference." This conference, held in Atlanta in 2006, convened more than 30 experts in statistics and paralysis to develop a functional definition of paralysis that could be used in a national survey and to draft a survey instrument for it.
- The development and testing of a pilot instrument. Researchers used cognitive testing to create the final instrument -- a process that helps to ensure that questions on a newly-developed survey are clear to respondents and mean the same thing as they do to the survey creators. They then administered the instrument by phone to more than 100 people, who then participated in follow-up interviews or focus groups about their understanding of the questions. Next, two waves of 1,000 people each participated in the survey (by phone). These activities led to four revisions of the instrument.
- Administration of the final survey. The final survey was administered by ICR International, a nationally-recognized research and polling firm, during 26 weeks in 2008. ICR conducted telephone interviews nationally between May and August 2008 with adults in 33,348 households in the United States. Since African Americans and Hispanics are usually under-represented in random national surveys, these groups were oversampled.
"If Christopher Reeve were alive today, he'd say, 'I told you so -- now get to work,'" concluded Wilderotter. In response, the foundation plans to launch a major campaign, and has laid out an ambitious public policy agenda (which is outlined in the One Degree of Separation report.)
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, and to review the entire list of Quality of Life grant recipients, please visit our website at www.ChristopherReeve.org or call 800-225-0292.
Contact us for more information, advance interviews, embargoed copy of the survey, broadcast-quality b-roll and/or high resolution photos: Jennifer Dickson, Suzanne Turner 202-466-9633.
FACT SHEET: Why Didn't We Know How May People Were Paralyzed Before?
Three factors distinguish this study from those previously undertaken about this issue:
- It surveyed a much larger population, and used a sophisticated sampling strategy that randomly surveyed people across the country, rather than in only one state or sub-state regions.
- It did not use clinical data (e.g., diagnoses that were given at one or more hospitals during a specific time period) for counting people with paralysis. While clinical data is an excellent source of information about the specific health issues faced by people who are paralyzed, it is generally not a good source of prevalence data because sometimes people with paralysis-related injuries seek care from health care providers for secondary health conditions that may result from -- but occurred long after -- their injury, meaning that they would not necessarily be diagnosed or, in turn, counted as those living with paralysis.
- It used a consistent definition of paralysis based on the definition of disabilities used by the World Health Organization (WHO), which uses function, rather than impairment (the medical model), as its frame.
What Do We Do Now?
The Reeve Foundation released a report titled "One Degree of Separation" with the new data. The report outlines those things necessary for increased quality of life for people living with paralysis, as well as the action steps necessary to ensure these supports and treatments are widely available. Insurance coverage and access to health care generally is only one set of barriers that confront people living with paralysis. Others include:
- Employment: Scattershot or lackluster adherence of the Americans with Disabilities Act (ADA) has left many workplaces ill-equipped to handle the employment of people with paralysis, leaving them with fewer job opportunities.
- Caregiving: The staggering number of family caregivers, supporting a population of 1.3 million individuals with spinal cord injury, need respite and better support systems.
- Limited number of personal care attendants: More and better trained and paid attendants are needed to provide morning and evening care to people with spinal cord injuries to allow many to return to work.
- Growing population with disabilities: The number of people living with spinal cord injury and paralysis is growing, living longer, and facing health-related and quality-of-life issues as they age.
"One Degree of Separation" also includes detailed information on specific reforms necessary to provide people living with paralysis the supports they need to live healthy, productive lives. These include:
- 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.
- 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.
- 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.
- Expand access to college opportunities for high school graduates with disabilities by making college more affordable, ensuring campus accessibility, offering special loans, and improving distance-learning technology.
- Authorize a comprehensive study of students with disabilities and issues relating to transition to work and higher education.
CONTACT: Jennifer Dickson
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