Knocking down societal barriers for people with disabilities

Society's lack of accommodation is often the greatest obstacle to independent living.

By Lisa Rabasca
Monitor staff

©Eleanor Draper

For people with a spinal cord or traumatic brain injury, the sudden loss of mobility and independence presents a tremendous hurdle--but it isn't the greatest obstacle they face, say rehabilitation psychologists.

Rather, the most challenging aspect of having physical disabilities is often society's failure to accept them and to provide services that can help people with disabilities return to work and care for themselves.

"Much of what we see as limiting people with disabilities is not their impairments, but how society reacts to that person or doesn't accommodate that person," says John D. Corrigan, PhD, director of the division of rehabilitation psychology at Ohio State University.

That failure to accommodate, says psychologist Susanne Bruyère, PhD, may stem from the public's naïveté about people with disabilities.

"It may be a lack of understanding about what it takes to make an accommodation, but it might also be a preconceived notion that a person with a disability doesn't have the capability," says Bruyère, director of the program on employment and disability at Cornell University.

Bruyère and Corrigan are among several psychologists exploring the barriers faced by people with disabilities. Their research is uncovering potential solutions and, they hope, could even make the case for significant changes in public policy that would provide better services for people with disabilities and enable them to have more control over their lives.

Difficulty returning to work

Bruyère is examining why the unemployment rate is high for people with disabilities. Her work could lead to more equitable job opportunities for
with cognitive and physical disabilities.

About 70 percent of people with severe cognitive and physical disabilities are unemployed even though three out of four say they would like to work, according to 1994-95 data from the U.S. Census Bureau, the most recent figures available.

Bruyère believes a significant contributing reason that people with disabilities don't get those jobs is that schools and counselors don't encourage them to access the same education and training programs as people without cognitive or physical disabilities.

"Employers tell us that they believe people with disabilities aren't equitably prepared for certain jobs," says Bruyère.

Bruyère began examining the validity of this assumption last December through a five-year, $3.5 million grant from the National Institute on Disability and Rehabilitation Research (NIDRR). She, along with public policy and economist colleagues from Cornell University and the Lewin Group of Fairfax, Va., will use existing Census and Social Security data from 1968 to 1998 to examine:

* The employment status of people with disabilities.

* The effect economic downturns and growth have on the employment and earnings of people with disabilities.

* The rate at which people return to work after the onset of a disability.

* The impact of civil rights protections, such as the Americans with Disabilities Act, on the employment and earnings of people with disabilities.

* The identification and analysis of policies that foster or impede the participation of people with disabilities in rehabilitation or employment programs.

One theory Bruyère and colleagues expect to prove is that people with disabilities don't go back to work after the onset of a disability for fear of losing their Social Security and public health-care benefits. Under the law, people can only receive Social Security Disability Income (SSDI), Supplemental Security income cash benefits and Medicare or Medicaid if they prove they can't work.

Currently, less than one-half of 1 percent of SSDI beneficiaries return to work.

"The way the system is structured, it may be better for an individual with a disability to never return to work because you will lose your cash payments and, more important, your health insurance," says Bruyère.

Congress is considering legislation that would extend federal health benefits for people who give up SSDI to return to work. The legislation would allow, but not require, states to provide Medicaid to people with disabilities who work, and would increase the length of time they could keep their coverage after they return to work from 39 months to six years.

If this legislation becomes law, Bruyère says her program will track whether it provides an incentive for people with disabilities to return to work.

Coordinated services

Substance abuse is another obstacle that keeps people with disabilities out of the workforce.

Armed with a grant from the Centers for Disease Control and Prevention, Ohio State's Corrigan is conducting research to determine whether people with traumatic brain injury who also have substance-abuse problems would fare better if their health-care services were better coordinated and included substance-abuse treatment. He hopes his research will encourage medical settings to provide case managers to patients after they are discharged from the hospital.

According to Corrigan, more than half of people at rehabilitation hospitals with traumatic brain injury had a substance-abuse problem before their disability. One in five develops one after his or her injury.

"If the disability has a quick onset, like a car accident, there are definite adjustment issues that can be stressors to the patient and may lead him or her to use alcohol or drugs as a coping mechanism," says Corrigan.

Yet substance abuse treatment for people with disabilities is often inadequate because rehabilitation and substance-abuse services are usually provided through separate programs.

"Patients often ping-pong back and forth and eventually drop out of treatment altogether," says Corrigan.

But, he believes, clients would stay in treatment if their services were coordinated through a case manager who worked with the patient and providers. The case manager would identify prospective clients, educate them about available resources in their community and work with their providers to make sure their needs are being met, says Corrigan.

Initial research data shows that patients with case managers have increased life satisfaction and are less likely to be using alcohol and drugs after nine months of treatment, compared to patients without a case manager.

Taking control

Psychologist Kristofer Hagglund, PhD, is evaluating a new personal assistance program developed by Missouri Medicaid that may save money and increase patients' independence. Missouri Medicaid has asked the Health Care Financing Administration for permission to offer a consumer-directed personal assistance program to people with disabilities.

Many people with disabilities need the services of a personal attendant who helps them to get out of bed in the morning, dress, eat and get to vocational training or work. In Missouri, these services are provided by an attendant who is employed by a home-health agency or similar agency, rather than by the person receiving the services so the agency directs the services instead of the consumer.

As a result, some consumers often complain that they don't have enough say over who their attendant is or the timing or types of services provided, says Hagglund, associate professor at the University of Missouri's Health Sciences Center in Columbia. For example, if a consumer wants to get out of bed at 8 a.m., but an attendant isn't available until 9 a.m., the consumer has to wait.

"People with disabilities should be able to obtain and schedule the services they need, and have control over their bodies, lives and futures," he says.

This fall, he will begin a two-year study to evaluate whether it's cost-effective for people with disabilities to interview, hire and direct their own personal attendants. He predicts that it will be less expensive to provide services this way because clients will develop fewer secondary conditions and need fewer medical services. For example, consumers have developed pressure sores on their bodies that can cost as much as $90,000 to treat because they were forced to lie in bed too long waiting for a personal attendant to move them.

Also, says Hagglund, consumers who direct their own services can live more independently and be involved in more activities outside the home.

"We expect," he says, "to see consumers who control their own personal attendants reporting better choice and increased satisfaction."

The study results will be used to encourage state Medicaid offices and legislators to shift the responsibility for interviewing, hiring and directing personal attendants from home-health agencies to consumers.



Read our privacy statement and Terms of Use

Cover Page for this Issue

PsychNET®
© 1999 American Psychological Association

APA Home Page . Search . Site Map