RESEARCH INFORMATION ON INDEPENDENT LIVING

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Volume 2, Issue 5 (online only)

On the http://WWW.GetRiil.Org/ database, we have summarized key points of research and news related to living a more independent and better life with disability. In this report, we have highlighted several of our database entries that list numerical findings.

For additional information on disability statistics, access the links at The National Center for the Dissemination of Disability Research http://www.ncddr.org/icdr/isds/pages.html

CILs

In a study of 116 centers on independent living, findings showed that the centers receive 96 information and referral contacts each month. Of that total, the centers reported an average of nine complaints about health each month from consumers. As to the type of health complaint, the breakdown was: access (26.7%), cost (23.7%), quality of care (11%), and other (28.7%). What do the centers do about the complaints? Many (74%) intervene on behalf of the consumers.

Batavia, A. (1999). The role of independent living centers in meeting the health care needs of people with disabilities. Independent Living News 1(1), 1-8. See http://www.lsi.ukans.edu/apps/riil/review.asp?702.

Although centers on independent living (CILs) have substantially grown in number, residents in 40% of the nation’s counties - mostly rural - lack access to independent living services, says the Rehabilitation Research and Training Center on Rural Rehabilitation Services at The University of Montana.

Rehabilitation Research and Training Center on Rural Rehabilitation Services. (1999). Estimating the cost of achieving universal access to centers for independent living. Missoula, MT: Author. See http://www.lsi.ukans.edu/apps/riil/review.asp?47

Media

In a study of 256 newspaper and magazine stories and 34 broadcast stories, the finding was almost 70% of the disability stories didn't use information from people with disabilities. The person with a disability was more likely to be used as an example in a news story than a source for information.

Haller, B. A. (1999). News coverage of disability issues: Final report for The Center for an Accessible Society. The Center for an Accessible Society.

See http://www.lsi.ukans.edu/apps/riil/review.asp?964

A look at college Web sites shows that a lot of Web designers just don't understand what it takes to make an accessible Web site. A random sample showed that of 400 prominent higher education facilities' homepages, only 22% had Bobby accessibility approval. No other accessibility "thumbs-up" programs were on the homepages studied. One year later, only 24% of the same homepages had Bobby approval. In another study, this one of 89 special education department home pages, only 27% homepages were deemed accessible.

Coombs, N. (2002). Electronic ramp to success: Designing campus web pages for users with disabilities. Educause Quarterly 2, 45-51.

See http://www.lsi.ukans.edu/apps/riil/review.asp?1106

Personal Assistance

The World Institute on Disability has identified 145 state-operated Personal Assistance Programs. Since 1994, 32 states have included this option in their state plan.

Pita, D. D., Ellison, M. L., Farkas, M., & Bleecker, T. (2002, January 7). Exploring personal assistance services for people with psychiatric disabilities: Need, policy and practice. Journal of Disability Policy Studies. See http://www.lsi.ukans.edu/apps/riil/review.asp?988

Self-Help Groups

This study on survival factors of self-help groups used the annually-updated database at Wichita State University to generate responses from groups for physical illness (38%), disability groups (11%), and groups for mental health concerns (10%). The main reasons for disbanding, survey results showed, were attendance problems (76%), problems or changes in leadership (52%), group no longer needed (35%), problems between members (31%), and logistical problems (31%). Professional involvement did not seem to be a factor in group survival.

Wituk, S. A., Shepherd, M. D., Warren, M., & Meissen, G. (2002, June). Factors contributing to the survival of self-help groups. American Journal of Community Psychology 30(3), 349-366. See http://www.lsi.ukans.edu/apps/riil/review.asp?1072

Employment

A five-year project involving 201 employees with hearing impairment (and 51 employers) assessed current practices in workplace accommodations. The majority (44%) of employees worked in managerial or professional positions; 35% worked in sales, support, or technical positions; and the rest worked in service or other occupations. Employees said the most common accommodation was assistive devices. The device most often cited was an amplified phone (66%). Most accommodations were for one-on-one communication and not for group situations. Support personnel (for example, a secretary) were mentioned by 25% of respondents as an accommodation. Job restructuring (for example, assignment exchange, procedure redesign) factored in only 25% of the employees’ jobs.

Scherich, D. L. (1996, April/May/June). Job accommodations in the workplace for persons who are deaf or hard of hearing: Current practices and recommendations. Journal of Rehabilitation, 27-35. See http://www.lsi.ukans.edu/apps/riil/review.asp?172

The U.S. Census determined that 49.7 million people (19% of the population) in the United States have a disability. Of those disabled between the ages of 21 and 64, 57% were employed. Full-time workers ages 16 to 64 with a disability earned on average $33, 109. Non-disabled counterparts earned an average of $43,269. Of the disabled workers in the ages 16 to 64 group, 72% had high school diplomas or higher education, and 11% had college diplomas. The states reporting the highest rates of disabled were Arkansas, Kentucky, Mississippi, and West Virginia. States with the least reported disability were Alaska, Minnesota, and Utah.

U.S. Census. (2002). 12th anniversary of Americans With Disabilities Act. Washington, DC: Author. See http://www.lsi.ukans.edu/apps/riil/review.asp?1151

Employers won 95% of Title 1 Americans With Disabilities Act (ADA) lawsuits in 1999 and won 85% of administrative complaints handled by the Equal Employment Opportunity Commission. John Parry, who did a survey on this subject, studied 444 cases and suggested that procedural and technical requirements in ADA made it hard for plaintiffs to win. When the American Bar Association did a survey on ADA wins (1992-1997), it found employees won 8.4% of cases. That number dropped to 5.6% in 1998 and to the 4.3% win record for 1999.

For more information, contact the American Bar Association Commission on Mental and Physical Disability Law, 740 15th Street NW, Washington, DC 20005, (202) 662-1570. See http://www.lsi.ukans.edu/apps/riil/review.asp?1001

“The sad saga of ADA [Americans With Disabilities Act] reflects how well-intentioned laws can be eviscerated by crabbed judicial interpretations," stated Marshall Tannick in a newspaper article. The problem, he wrote, is that court rulings require employees to have substantial impairment of a major life activity, but, to be covered by the law they must also be able to perform the "essential functions" of the job. This interpretation has resulted in more than 90% of ADA claims to be dismissed, Tanick maintained. #1021 Tanick, M. H. (2002, April 20). A disabled law: After a decade of Supreme Court setbacks, the once-heralded Americans With Disabilities Act has been effectively crippled. Minneapolis Star Tribune.

See http://www.lsi.ukans.edu/apps/riil/review.asp?1023

A study of 500 professionals, all with serious mental illness, showed that 73% had full-time employment as nurses, case managers, administrators, lawyers, professors, and chief executive offices. Twenty percent earned more than $50,000 a year. Of those surveyed, 84% took medication for their illness at the time of the study.

Ellison, M. L., & Russinova, Z. (2000). A national survey of professionals and managers with psychiatric conditions: A portrait of achievements and challenges. Boston: The Rehabilitation Research and Training Center on Psychiatric Rehabilitation.

See http://www.lsi.ukans.edu/apps/riil/review.asp?262

Building upon previous research done at Indiana University and the University of Oregon, these researchers recruited 462 employees from 13 vocational programs providing employment services to people with disabilities. An additional 538 employees were tested in a second survey to verify the initial findings. No significant gender differences were found overall, but males were more likely to engage in sexually inappropriate behavior and be aggressive to objects on the job than females. The men also had more hygiene problems than females. Women had more jobs in food service or clerical work, and men had more janitorial jobs. Men made an average $622.10 monthly wage and women made $543.71. Women also worked an average of 20.24 hours a week and men worked 23.01 hours. Because women worked fewer hours than men, they made less money overall. These results are similar to other studies regarding women with disabilities in the workplace.

Olson, D., Cioffi, A., Yovanoff, P., & Mank, D. (2000). Gender differences in supported employment. Mental Retardation 38(2), 89-96.

See http://www.lsi.ukans.edu/apps/riil/review.asp?846

The average community-based rehabilitation program has increased in size, while the number of these programs has declined. Results showed that the community-based rehabilitation programs serve about 40% of consumers, which was similar with many studies. Other findings were:

* The typical program served 219 consumers each day, mainly people with disabilities.
* More than 60% of the programs offered supported employment, sheltered employment programs, job skills and work adjustment programs, and vocational evaluation and assessment.
* Almost 60% offered placement programs.
* Service fees covered a mean of 76% of costs; other funds came from state vocational rehabilitation system, developmental disabilities, and mental health. Some funds came from business income.

Botterbusch, K. F., & Miller, J. W. (1999). A survey of community-based rehabilitation programs: Goals, outcomes, consumers, finances, and changes. Menomonie, WI: University of Wisconsin-Stout, Stout Vocational Rehabilitation Institute, Research and Training Center on Community Rehabilitation Programs to Improve Employment Outcomes. See http://www.lsi.ukans.edu/apps/riil/review.asp?123

ADA

Professional mediators trained in the Americans With Disabilities Act (ADA) have helped resolve more than 80 percent of cases brought to them about the ADA. Many of these complaints were about physical accessibility and resolved with the installation of ramps and accessible parking. Provision of sign language interpreters at the expense of a service provider or entertainment facility was another recurring complaint.

U.S. Department of Justice. (1999, December). Enforcing the ADA. Washington, DC: U.S. Department of Justice, Civil Rights Division, Disability Rights Section. See http://www.lsi.ukans.edu/apps/riil/review.asp?799

Accessibility

After the election of George W. Bush, the U.S. General Accounting Office found that 72% of polling places in the 2000 presidential election had one or more physical barriers to people with disabilities. While most did offer curbside voting, one out of four did not.

LaFleur, J. (2001, October 26). Disabled voters sample some high-tech help. St. Louis Post-Dispatch. See http://www.lsi.ukans.edu/apps/riil/review.asp?838

Secondary Conditions

Using data from 6,247 individuals, researchers measured depression with the Center for Epidemiological Studies Depression Scale each year for six years. Results showed that depressed people were slightly older, tended to be female, were less educated, and had lower incomes than those without depression. Those who were more depressed developed more daily life disability, 36.1% compared to 23.9% (non-depressed). Also, 48.3% of the non-depressed and 67.3% of the depressed persons developed mobility disability. Why does depression increase the risk for disability? Lack of physical activity was the suspected reason.

Penninx, B.W.J.H., Leveille, S., Ferrucci, L., van Eijk, J. T. M., & Guralnik, J. M. (1999). Exploring the effect of depression on physical disability: Longitudinal evidence from the established populations for epidemiologic studies of the elderly. American Journal of Public Health 89(9), 1346-1352. See http://www.lsi.ukans.edu/apps/riil/review.asp?14

After analyzing the results of 650 surveys filled out by Arkansans with spinal cord injuries, The Arkansas Spinal Cord Commission found that 32.7% said they had a pressure sore within the last year; 21% had one at the time of the survey. People who had urethral catheters had more pressure sores than those who managed their bladder differently. Factors surfaced that could have led to pressure sores: tobacco use, bladder management, bowl incontinence, and depression.

Arkansas Spinal Cord Commission. (1996, July). Identifying secondary conditions in Arkansans with spinal cord injuries: A final report. Little Rock, AR: Arkansas Spinal Cord Commission. See http://www.lsi.ukans.edu/apps/riil/review.asp?350

Results of the investigation indicated that one in three persons living with a spinal cord injury in the community has a pressure sore at any particular time. At a single point in time, 100 men and 40 women with spinal cord injury living in the community were examined for pressure sores and 33% had a sore. Of those with a sore, 46% had more than one. Most sores (69%) were in the pelvic region; 29.9% had one on their legs. People who had the most ulcers were also the ones who had the least motor control.

Fuhrer, M. J., Garber, S. L., Rintala, D. H., Clearman, R., & Hart, K. A. (1993). Pressure ulcers in community-resident persons with spinal cord injury: Prevalence and risk factors. Archives of Physical Medicine and Rehabilitation 74, 1172-1177.

See http://www.lsi.ukans.edu/apps/riil/review.asp?363

Assistive Technology

This study interviewed a random sample of 1,405 older persons in his or her home by a trained interviewer. The following devices were found with the first percentage indicating a person less than 75 years old and the second number indicating a person older than 75 years: Walking stick (24%, 39%); walking frame (3%, 3%); wheelchair (2%, 6%); lavatory rail (9%, 7%); raised lavatory seat (3%, 8%); commode (6%, 15%); bathroom rail (18%, 32%); non-slip bath mat (53%, 57%); stair rail (13%, 17%), and bed hoist (less than 1%, 1%). The most common aid (disregarding hearing aids or eyeglasses) was a walking stick (74%). Edwards, N. I. (1998, July). Ownership and use of assistive devices amongst older people in the community. Age and aging. See http://www.lsi.ukans.edu/apps/riil/review.asp?457

In a study of 279 persons with spinal cord injuries, all injured more than 20 years, 59% reported changing their medical equipment. Almost 25% listed fatigue and weakness as the reasons for the change; about the same amount listed medical problems for the switch.

The Rehabilitation Research and Training Center on Aging With a Spinal Cord Injury. (n.d.). Power chair. Englewood, CO: The Research and Training Center on Aging With a Spinal Cord Injury. See http://www.lsi.ukans.edu/apps/riil/review.asp?117

Wellness

The connection between body mass index (BMI) and upper- and lower-body disability was examined among adult subjects from the National Health and Nutrition Examination Survey. Those who completed the surveys done in a 20-year period were individuals between ages 25 and 74 who did not live in institutions. Fewer than 4% of the subjects were underweight, 34% were overweight and almost 17% were obese. The results showed that obesity (or a BMI of over 30) was associated with higher levels of upper- and especially lower-body disability. Underweight persons (or a BMI less than 18.5) also meant higher disability in most cases. In conclusion, disability risk was higher for obese persons but excess weight was not consistently associated with higher disability.

Ferraro, K. F., Su, Y., Gretebeck, R. J., Black, D. R., & Badylak, S. F. (2002, May). Body mass index and disability in adulthood: A 20-year panel study. American Journal of Public Health 92(5), 834-840. See http://www.lsi.ukans.edu/apps/riil/review.asp?1011

Death

After Oregon enacted physician-aid-in-dying laws, the Oregon Health Division (OHD) issued a report based on data from physicians and a family member chosen by a physician. The report stated that the annual number of assisted deaths rose from 16 to 27. Only 37% of patients were tested for mental competency. Thirty-one percent got a lethal prescription from the first physician they approached, which prompted the others to find their death drugs (for example, barbiturates) from another physician. Three patients took more than 11 hours to die; one took 26 hours to die. According to physicians, the reason for choosing death was loss of autonomy and decreasing ability to participate in enjoyable activities (81%); pain that was getting worse was given as a reason by 26% of the surveyed population. Almost half of the patients said they wanted to commit suicide because they were a burden to friends and family, according to family reports. Oregon’s Medicaid program funds assisted suicide. The report can be seen in the February 24, 2000 New England Journal article by A. Sullivan and more information can be found through On the Level, League of Human Dignity, 1701 P Street, Lincoln, NE 68508.

Rush, W. L. (2000, July/August). Oregon’s Death With Dignity’s Act’s second year: The terrible twos?questionable data, unsettling drift. Lincoln, NE: League of Human Dignity. See http://www.lsi.ukans.edu/apps/riil/review.asp?395

Aging

An estimated 50% of adults 65 years of age or older and 40% of adults over age 80 have one or more falls each year. Not only do falls cause injury and lead to loss of independence, they are a leading cause of death in these age groups. Fear of falling, too, often restricts daily living activities. Risk factors for falls include medical conditions, fear of falling itself, poor lighting, loose rugs, slippery surfaces, and mobility problems.

Whitney, S. L., Poole, J. L., & Cass, S. P. (1998). A review of balance instruments for older adults. The American Journal of Occupational Therapy 52(8), 666-671. See http://www.lsi.ukans.edu/apps/riil/review.asp?49

People are getting more concerned about living in their own homes as they age, found "Fixing to Stay," a survey done by the American Association of Retired Persons (AARP). Through 2,000 random phone calls, the AARP also discovered people are making simple changes, such as nonskid bathtub strips and higher-wattage light bulbs to increase safety and accessibility. Of 100 million housing units, fewer than 10% have accessibility features.

Fahey, M. (2000, May 5). Washington Times. See http://www.lsi.ukans.edu/apps/riil/review.asp?207

The current number of people with Alzheimer’s should quadruple in the next 50 years to 8.64 million, said the researchers. That means that 1 in 45 Americans will have Alzheimer’s. If things could be done to delay onset by even two years, then there would be two million fewer people with this disease in 50 years. Four studies helped determine the number of people at different ages that have Alzheimer’s. The researcher’s rates were: age 75 (4.3%), 80 (8.5%), 85 (16%), and 90 (28.5%). The information suggested that the rate of Alzheimer’s increases as people age, at last until age 90. These studies were consistent with international studies.

Brookmeyer, R., Gray, S., & Kawas, C. (1998). Projections of Alzheimer’s disease in the United States and the public health impact of delaying disease onset. American Journal of Public Health 88(9), 1337-1342. See http://www.lsi.ukans.edu/apps/riil/review.asp?6

Benefits

A person with a disability who does not have health insurance uses health care services less than a person who does have insurance. Results from this study showed that adults with disabilities who can not work or keep house contacted physicians almost 20 times a year compared to people not limited in major activities. The latter contacted physicians 3.9 times annually. Uninsured adults unable to perform major life activities have 25% fewer physician contacts than counterparts with insurance. Forgoing physician contact can result in the development of secondary conditions and cause disabilities to become more severe.

LaPlante, M. P. (1997). Disability, health insurance coverage, and utilization of acute health services in the United States. Disability Statistics Report (4). Laurel Heights, CA: Disability Statistics Rehabilitation Research and Training, University of California.

See http://www.lsi.ukans.edu/apps/riil/review.asp?338

The Disability Statistics Center in San Francisco studied the use of HCBS waivers by looking at annual state reports and information from its survey. Findings from 1992-1997 included:

* The 1915c HCBS Medicaid waiver program grew about 19% each year. In 1992, there were 235,668 waiver participants and in 1997, 561,510 participants.
* Costs grew more than $5.7 billion with an annual growth rate of 22%.
* Waivers primarily assist people with mental retardation or other developmental disabilities and people who are aged and disabled.
* The largest use of services was for respite, home health, and personal care.

Harrington, C., & LeBlanc, A. (2001, October). Medicaid home and community-based services. San Francisco, CA: University of California, Disability Statistics Center. See http://www.lsi.ukans.edu/apps/riil/review.asp?1015

After a series of analytic tasks, results indicated that Medicare beneficiaries with functional limitations enrolled in HMOs were in better health than counterparts in traditional Medicare. About two-thirds (66.4%) said they were in good, very good, or excellent health compared with 52.64% of those with traditional coverage. Both groups had about the same satisfaction level, which was high (90%).

Beatty, P. W., & Dhont, K. R. (2001). Medicare health maintenance organizations and traditional coverage: Perceptions of health care among beneficiaries with disabilities. Archives of Physical Medicine Rehabilitation 82, 1009-1017. See http://www.lsi.ukans.edu/apps/riil/review.asp?828

People with disabilities use more medical services-up to four times as much-than those without disabilities. Yet people with disabilities are more likely to not have insurance, and, if they do, it is public insurance. A breakdown of medical payment sources showed:

* 50% of people with disabilities have public insurance (30% Medicare, 10% Medicaid, and 10% other public source); only 20% of the nondisabled population has public insurance.
* Medicare paid for 40% of hospital costs for people with disabilities and 14% for nondisabled. Private health insurance picked up the tab 30% for people with disabilities compared with 55% for nondisabled.

Information for this study came from the 1987 National Medical Expenditures Survey. For more information, contact Disability Statistics Rehabilitation Research and Training Center, University of California-San Francisco, 3333 California Street, San Francisco, CA 94118, (415) 502-5210, http://dsc.ucsf.edu/

Trupin, L, Rice, D. P., & Max, W. (1995). Medical expenditures for people with disabilities in the United States, 1987. Disability Statistics Report #5. Laurel Heights, CA: Disability Statistics Rehabilitation Research and Training Center. See http://www.lsi.ukans.edu/apps/riil/review.asp?347

In this study by the Research and Training Center on Workplace Supports at Virginia Commonwealth University, 390 participants served by 19 supported employment agencies were asked to fill out 32 multiple-choice responses. The consumers worked in these fields: food preparation (30%), janitor/housekeeper (16%), stock clerk/grocery (16%), assembly (15%), clerical (11%), other (4%), human service (3%), laborer (3%), laundry (3%), and grounds keeper (1%). Results showed that those in clerical jobs were more integrated than those in other jobs. Factory workers had the least integration. Participants worked an average of 2.5 years.

Rehabilitation Research and Training Center on Workplace Supports. (1996, Summer). Supported employment research: Impacting the work outcomes of individuals with disabilities/Vocational Integration Study. Richmond, VA: Author.

See http://www.lsi.ukans.edu/apps/riil/review.asp?60

Deinstitutionalization

More than 1.6 million Americans live in nursing homes and probably won't leave the homes until their deaths. Several small studies have suggested that for-profit nursing homes, which make up two-thirds of the nation's nursing homes, offer poor care. Of the homes in this study that had similar findings, 65.8% were investor owned, 27.7% were nonprofits, and 6.5% were public. Nurse staffing in all types of nursing occupations was lower at investor-owned homes, which may have something to do with care quality. Investor owned homes were larger than private nursing homes, which may impact quality. Yet public nursing homes were usually larger than investor owned homes and rated higher on care quality. The most obvious explanation for poor care, the researchers theorized, is that profit seeking takes funds from clinical care. The nation's largest nursing home often makes $5.28 per patient each day.

Harrington, C., Woolhandler, S., Mullan, J., Carrillo, H., & Himmelstein, D. U. (2001, September). Does investor ownership of nursing homes compromise the quality of care? American Journal of Public Health 91(9), 1452-455. See http://www.lsi.ukans.edu/apps/riil/review.asp?783

According to the Federal Task Force on Homelessness and Severe Mental Illness, only 5% to 7% of homeless people with mental illness need institutional care. The rest can live in the community with appropriate housing, rehabilitation services, and self-care support.

National Resource Center on Homelessness and Mental Illness. (1999, April). Mental illness and homelessness. Delmar, NY: Author.

See http://www.lsi.ukans.edu/apps/riil/review.asp?1068

Family Caregiving

Using the National Longitudinal Survey of Mature Men, a sample of more than 5,000 Americans, these researchers investigated how disability affects elderly men’s living arrangements. They defined disability as having these characteristics: inability to go outdoors without help from another, inability to use public transportation without help, and help needed with driving. They found that disabled men were more likely to be living with relatives than non-disabled men. This was especially true if a man had more than one disability. Almost 38% of the men with one or more disabilities lived with adult relatives as compared with 28% of men with one disability and 25% without a disability. Being black and being older also were associated with shared living arrangements. Black men were five times more likely to live with adult relatives than white men. Individual income did not seem to influence living arrangements, nor did availability of living children.

Stinner, W. F., Byun, Y., & Paita, L. (1990). Disability and living arrangements among elderly American men. Research on Aging 12(3), 339-363.

See http://www.lsi.ukans.edu/apps/riil/review.asp?548

Today a little less than half a million adults with disabilities live with their parents who are age 60 or over, according to the University of Illinois at Chicago. If the parent dies unexpectedly, the adult with a disability most often will enter respite or emergency care until state officials make a decision. About 12% of the time, a sibling assumes care, said Leo Sarkissian, executive director of the Arc in Massachusetts. Otherwise, many go to live in institutions.

Robertson, T. (2001, May 28). As parents age, future for disabled a worry. Boston Globe. See http://www.lsi.ukans.edu/apps/riil/review.asp?872

Information for this review came from the interactive Research Information on Independent Living (RIIL) database at , which contains research summaries related to independent living with disabilities. A special effort has been made to include information that independent leaders in the field said they wanted, namely topics regarding accessible, affordable housing, effective advocacy for rural areas, effective transition from schools and nursing homes, accessible, affordable transportation, reaching underserved populations, policies that impede independent living, rural health care services, and Medicaid/Medicare regulations for durable equipment.

RIIL is a joint effort of the Research and Training Center on Independent Living at the University of Kansas and the Independent Living Research Utilization (ILRU) Program of TIRR.

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