1997-98 ANNOTATED BIBLIOGRAPHY OF ACADEMIC PUBLICATIONS
BY INVESTIGATORS AT THE CENTER FOR RESEARCH ON WOMEN WITH DISABILITIES
BAYLOR COLLEGE OF MEDICINE
DEPARTMENT OF PHYSICAL MEDICINE & REHABILITATION
Abuse & Violence
Nosek MA, Howland CA, Young ME. Abuse of women with disabilities: Policy implications. Journal of Disability Policy Studies 1997;8:157-176.
ABSTRACT According to the National Study
of Women with Physical Disabilities, the prevalence of abuse was not significantly
different between women with and without disabilities. Women with physical
disabilities, however, reported significantly longer durations of abuse.
Unique vulnerabilities to abuse experienced by women with disabilities
include social stereotypes of asexuality and passivity, acceptance of abuse
as normal behavior, lack of adaptive equipment, inaccessible home and community
environments, increased exposure to medical and institutional settings,
dependence on perpetrators for personal assistance, and lack of employment
options. In order to enable the identification of women with disabilities
who are in abusive situations and their referral to appropriate community
services, policy changes are needed to increase training for all types
of service providers in abuse interventions, improve architectural and
attitudinal accessibility to programs for battered women, increase the
responsiveness of adult protective services, increase options for personal
assistance, expand the availability of affordable legal services, and improve
communication among community services.
Nosek MA. Sexual abuse of women with physical disabilities. In: Krotoski DM, Nosek MA and Turk MA(eds): Women with Physical Disabilities: Achieving and Maintaining Health and Well-Being. Baltimore: Paul H. Brookes Publishing Co. 1966,pp 17-33.
ABSTRACT Inquiry into the sexual abuse
of women with disabilities is one of the most complex, controversial, and
disturbing challenges facing rehabilitation researchers. It raises a combination
of many unresolved issues in the studies of abuse, disability, and the
status of women. As a dimension of the general study of abuse, disability
has barely been acknowledged. As a dimension of the general study of disability,
abuse has only recently surfaced as a problem and has yet to be the subject
of rigorous scientific inquiry. To unveil the importance of this problem
and to set forth some parameters for further investigation into its magnitude
and impact, this chapter reviews the literature on the sexual abuse of
women with disabilities and presents the findings of a qualitative study
of sexuality issues among women with physical disabilities. In this study,
the experience of abuse emerged as an unexpectedly strong and ominous theme.
Special attention is given to the effect of having a disability on increasing
a woman's vulnerability to sexual abuse. (1sxlabus.wpd)
Young ME, Nosek MA, Howland CA , Chanpong G, Rintala, DH. Prevalence of abuse of women with physical disabilities. Archives of Physical Medicine and Rehabilitation 1997; 78 (Suppl):S34-S38.
ABSTRACT Emotional, physical, and sexual abuse of women with physical disabilities is a problem largely unrecognized by rehabilitation service providers. This article documents the prevalence of abuse of women with physical disabilities compared to women without physical disabilities. The Research design was a case-comparison study using written survey. A sample of 860 women, 439 with physical disabilities and 421 without physical disabilities, was compiled from women responding to a national sexuality survey. The women were asked if they had ever experienced emotional, physical, or sexual abuse. If they answered yes, they were asked to identify the perpetrator(s) of the abuse and when the abuse began and ended. Sixty-two percent of both groups of women had experienced some type of abuse at some point in their lives. Of women who had experienced abuse, half of each group had experienced physical or sexual abuse. Husbands or live-in partners were the most common perpetrators of emotional or physical abuse for both groups. Male strangers were the most common perpetrators of sexual abuse for both groups. Women with physical disabilities also were more likely to be abused by their attendants and by health care providers. Thirteen percent of women with physical disabilities described experiencing physical or sexual abuse in the past year. Women with physical disabilities appear to be at risk for emotional, physical, and sexual abuse to the same extent as women without physical disabilities. Prevalence of abuse by husbands or live-in partners in this study is similar to estimates of lifetime occurrence of domestic violence for women living in the United States. They are also more likely to experience a longer duration of abuse than women without physical disabilities.
Americans with Disabilities Act (ADA)
Matson CC, Holleman WL, Nosek MA, Wilkinson W. The effect of the Americans with Disabilities Act on the delivery of medical services. National Association of Rehabilitation Professionals in the Private Sector 1993;8(3):115-20.
ABSTRACT The Americans with Disabilities
Act of 1990 prohibits discrimination against persons with disabilities
by medical professionals and facilities. Pre-employment medical evaluations
are prohibited by the law. Medical evaluations may be performed after an
offer of employment, but before job assignment has been made. Employment
may be conditional on results only if medical confidentiality is protected,
exclusionary criteria are job-related and are applied universally, and
do not discriminate against individuals with disabilities. The law assures
that persons with disabilities will have equal access to medical care,
through prohibiting discrimination based on disability; and through the
design and construction of medical offices.
Matson CC, Holleman WL, Nosek MA, Wilkinson W. The impact of the Americans with Disabilities Act on family physicians. Archives of Family Practice 1993;36(1):1-6.
ABSTRACT The Americans with Disabilities Act of 1990 prohibits discrimination against persons with disabilities in employment, government services, public accommodations, public transportation, and telecommunications. This article reviews the impact of the law on the practice of family physicians. Pre-employment medical evaluations are prohibited by law, but medical evaluations may be performed after an offer of employment and before job assignment has been made. Employment may be conditional on results only if medical confidentiality is protected, and exclusionary criteria are job related, applied universally, and do not discriminate against individuals with disabilities. The law provides that persons with disabilities will have equal access to medical care, through prohibiting discrimination based on disability and through the design and construction of medical offices. The law requires physicians who are covered by the law to make reasonable accommodations so that qualified employees and applicants can perform the essential functions of a job.
Nosek MA, Howland CA. Breast and cervical cancer screening among women with physical disabilities. Archives of Physical Medicine and Rehabilitation 1997;78(suppl):S39-S44.
ABSTRACT This article reports findings
from the National Study of Women with Physical Disabilities about rates
of screening for breast and cervical cancer and factors associated with
regular screening in a large sample of women with a variety of physical
disabilities and a comparison group of women without disabilities. Participants
included 843 women, 450 with disabilities and 393 of their able-bodied
friends, aged 18-65, who had completed the written questionnaire. The most
common primary disability type was spinal cord injury (26%), followed by
polio (18%), neuromuscular disorders (12%), cerebral palsy (10%), multiple
sclerosis (10%), and joint and connective tissue disorders (8%). Twenty-two
percent had severe functional limitations, 52% had moderate disabilities,
and 26% had mild disabilities. Outcomes were measured in terms of frequency
of pelvic exams and mammograms. Women with disabilities tend to be less
likely than women without disabilities to receive pelvic exams on a regular
basis, and women with more severe functional limitations are significantly
less likely to do so. No significant difference was found between women
with and without disabilities, regardless of severity of functional limitation,
in receiving mammograms within the past two years. Perceived control emerged
as a significant enhancement factor for mammograms and marginally for pelvic
exams. Severity of disability was a significant risk factor for noncompliance
with recommended pelvic exams, but not mammograms. Race was a significant
risk factor for not receiving pelvic exams, but not mammograms. Household
income and age did not reach significance as risk factors in either analysis.
Women with physical disabilities are at a higher risk for delayed diagnosis
of breast and cervical cancer, primarily for reasons of environmental,
attitudinal, and information barriers. Future research should focus on
the subpopulations that were not surveyed adequately in this study, women
with disabilities who have low levels of education or income, or whoare
of minority status.
Krotoski DM, Nosek MA, Turk MA. Women with Physical Disabilities: Achieving and Maintaining Health and Well-Being. Baltimore:,1997. Paul H. Brookes Publishing Co.
ABSTRACT The advances and changes in
the field of physical and mental health have virtually overlooked the concerns
and interest of women with physical disabilities. Indeed, the notion of
women's health in the context of physical disabilities has not yet been
explored. Now Women with Physical Disabilities: Achieving and Maintaining
Health and Well-Being provides a candid and forthright examination of these
issues. With contributions from widely known and well respected researchers,
this progressive resource addresses a broad range of issues relevant to
women with physical disabilities, including sexuality and reproduction...love,
marriage, and relationships...bowel and bladder man-agement...stress...and
physical fitness. Thought provoking chapters, many by women with disabilities,
relay the need for accurate and up-to-date information on the mental and
physical health of young girls and women with disabilities. You'll read
personal accounts of insensitive treatment and emotional and physical abuse
experienced by women with disabilities. You'll learn about state-of-the-art
practices in physical and mental health, and you'll identify areas of clinical
practice that need improvement. Building on current interest in women's
health, this book provides important insight into what will be needed in
the future and will guide you as new policies evolve.
Nosek MA, Young ME, Rintala DH, Howland CA, Foley CC, Bennett JL. Barriers to reproductive health maintenance among women with physical disabilities. Journal of Women's Health 1995;4(5):505-18.
ABSTRACT This study examined barriers
to reproductive health maintenance among women with physical disabilities.
A qualitative interview methodology was used. All interviews were recorded
on audio cassette, transcribed, and analyzed using constant comparison
and analytic induction. Thirty-one women with disabilities that resulted
in functional impairments were interviewed. Theoretical sampling was used
to assure that the individuals selected represented key variables thought
to affect sexuality, such as type of disability, age at onset of disability,
ethnicity, and marital status. Identified themes coalesced into two major
domains: participants' experiences, including childhood interactions with
medical settings, opportunities to learn about reproductive health, abuse
experienced in medical settings, and disability as a risk factor for reproductive
health problems; and characteristics of medical systems and practitioners,
including problems with health insurance, medical systems' policies, attitudes
of practitioners, architectural barriers in medical facilities, the need
for direct communication, and contradictory information about contraception.
Results of this study indicate a strong influence of characteristics of
medical systems and practitioners on the knowledge, beliefs, and experiences
of women with physical disabilities as they strive to maintain their reproductive
health. An analytic model is proposed that presents disability status as
having a strong influence on the internal factors that lead to reproductive
health maintenance behaviors, such as knowledge, beliefs, psychological
factors, and medical experiences. While disability itself does not have
a direct effect on environmental factors, such as medical systems and professionals,
it conditions the way in which medical systems and professionals respond
to women. Environmental factors influence internal factors. Both, in turn,
affect reproductive health maintenance.
Nosek MA. Primary care issues for women with severe physical disabilities. Journal of Women's Health 1992;1(4):245-8.
ABSTRACT Active, vibrant, healthy, involved women with severe physical disabilities face some substantial barriers to receiving the primary health care they need to maintain their lifestyle. Many of these barriers are ones you will all recognize; others are so subtle that only those who are the most attuned to disability issues will be aware of their impact. These issues fall into five basic categories: access, information, attitudes, finances, and personal assistance. My purpose is not only to cite the problems but also to offer some solutions and five keys to improving your medical practice for women with disabilities.
Nosek MA, Holmes SA. Ventilator users: Independent living and quality of life. Physical Medicine and Rehabilitation Clinics of North America 1996;7(2):445-56.
ABSTRACT Contrary to prevailing opinion,
a life of quality and independence is possible for persons who use ventilators.
Pioneers in the independent living movement, many of whom use ventilators,
paved the way for the creation of opportunities for independence for ventilator
users and others with disabilities. Every opportunity, however, is dependent
on personal, interpersonal, social, and environmental factors. This article
presents a heuristic model for examining independent living that was derived
from the philosophy underlying the independent living movement. It also
discusses research on quality of life for persons who use mechanical ventilation
and analyzes the issues of quality of life and independent living that
face this population. The authors draw on their experiences as ventilator
users and as rehabilitation researcher and clinician, respectively.
Nosek MA and Krouskop TA. Demonstrating a model approach to independent living center-based assistive technology services. Assistive Technology 1995;71:48-54.
ABSTRACT This project examined the effectiveness
of an assistive technology preventive maintenance service for consumers.
Sixteen independent living centers that offer mobility equipment repair
services for consumers were surveyed. Thirty-seven consumers and 22 vendors
supplying mobility equipment and repair services within the Houston area
were interviewed. Problems identified included lack of available services
to maintain mobility equipment in good working order, no centralized information
and evaluation system, denials of needed equipment by third party payers,
and high equipment costs. A collaborative effort between the Independent
Living Research Utilization Research and Training Center on Independent
Living at The Institute for Rehabilitation and Research in the Texas Medical
Center, and the Houston Center for Independent Living designed and implemented
a model preventive maintenance service - The Wheelchair Maintenance Clinic.
Evaluation after the first year of operating the clinic showed 111 service
visits were delivered to 50 consumers. Consumers reported high levels of
satisfaction with the service.
Nosek MA. The defining light of Vedanta: Personal reflections on spirituality and disability. Rehabilitation Education 1995; 9 (2-3): 171-82.
ABSTRACT The importance of spirituality
in living with physical disability is explored from the first-person perspective.
The author follows the teachings of Vedanta, the universal, essential philosophy
of Hinduism. She explains the role her spirituality has played in defining
herself as 1) a seeker of God, 2) a person with a disability, 3) an independent
person, 4) a person who is employed, and 5) a woman. In her personal experiences
with rehabilitation systems and in her training as a rehabilitation counselor
and researcher, the role of spirituality in living with disability was
never mentioned. Research on spirituality and disability is hindered by
the difficulty of quantification and the lack of a common vocabulary. In
clinical settings, there is a need for appropriate, positive interventions
by spiritual counselors. It is likely that spirituality serves as a strong
motivator in all the domains of rehabilitation, including physical, vocational,
psychological, and social. A new definition of rehabilitation in terms
of self-definition in a spiritual context is proposed.
Howland CA, Walden E, Nosek MA. Independent living centers and private sector rehabilitationists: A dynamic partnership for implementing the ADA. National Association of Rehabilitation Professionals in the Private Sector 1993;8(2):75-81.
ABSTRACT Independent living centers,
which provide consumer-directed services to persons with a wide variety
of disabilities, offer the training, resources, and personnel with disabilities
to provide cost-effective ADA consultation services to private rehabilitationists.
ADA services most frequently offered by centers include on-site accessibility
surveys, training workshops, general information and referral, and employment-related
information. Teamwork involving private-sector rehabilitation professionals,
ADA-trained independent living specialists, persons with disabilities,
and employers will facilitate compliance with the ADA during the process
of returning a client to work.
Nosek MA, Zhu Y, Howland CA. The evolution of independent living programs. Rehabilitation Counseling Bulletin 1992; 35: 174- 89.
ABSTRACT Over the past decade, a number
of independent living programs in the United States have mushroomed. Since
1977, the total has risen from 52 to more than 400. One of the first programs,
the Berkeley Center for Independent Living, became the prototype for the
effective delivery of independent living services. Pioneered in the early
1970s by persons with severe disabilities, this program was designed to
help others with disabilities to live independently and to promote a more
accessible society. With the assistance of federal funding, independent
living programs modeled after the Berkeley Center have been established
throughout the United States. Despite such phenomenal growth and development
in this field, questions remain about the characteristics of independent
living programs, the characteristics that distinguish them from traditional
service providers, and the ways in which they are likely to evolve in the
future. To demonstrate exactly how independent living programs have evolved
to reflect their many differences from traditional models of rehabilitation
service delivery, Independent Living Research Utilization (ILRU) has conducted
several surveys of the characteristics of independent living programs in
the United States. Established in 1977 as an information resource, ILRU
was the first to conduct research leading to the standardization of definitions
related to independent living. It also conducted the first national survey
of independent living programs in 1977, followed by others in 1984, 1986
and 1988. After becoming a research and training center for independent
living in 1985, ILRU considerably expanded the survey in 1986, which was
improved and repeated in 1988 to provide a basis for comparison. The purpose
of this article is to clarify many of the lingering questions about the
features of a typical independent living program by presenting the results
of the 1988 survey. In addition, a comparison of results with those from
the 1986 survey was seen as potentially illuminating future directions
for theevolution of independent living (IL) programs. To provide a backdrop
against which independent living programs have evolved since 1977, the
philosophy, services, and traditional funding sources of independent living
programs are discussed.
Nosek MA, Howland CA. The role of independent living centers in delivering rehabilitation services to rural communities. American Rehabilitation 1992;18(1):2-6.
ABSTRACT This article discusses the most
powerful barriers to independent living for rural residents with severe
disabilities, then examines the application of some successful strategies
to overcoming these barriers in specific rural communities.
Nosek MA, Fuhrer MJ. Independence among people with disabilities: I. A heuristic model. Rehabilitation Counseling Bulletin 1992;36(1):6-20.
ABSTRACT A heuristic model of independence
is developed, discussed in reference to a hierarchy of fundamental human
needs, and applied to the needs of people with disabilities. Four essential
components of independence are identified and defined: 1) perceived control
of one's life, 2) physical functioning, 3) psychological self-reliance,
and 4) characteristics of the physical and social environment. These components
are then discussed in relation to a quasi-Maslovian hierarchy of four levels:
1) basic survival, 2) material well-being, 3) productivity, and 4) self-actualization.
Based on the independence needs of persons with disabilities for greater
control over the services they receive from medical and vocational rehabilitation
establishments, recommendations are made for research and policy changes.
Nosek MA, Fuhrer MJ, Howland CA. Independence among people with disabilities: II. Personal Independence Profile. Rehabilitation Counseling Bulletin 1992;36(1):21-36.
ABSTRACT The Personal Independence Profile
(PIP) was developed to measure components of independence that are applicable
to people with a wide variety of disabilities and that are compatible with
the philosophy of independent living. Reliability and validity testing
with two hundred consumers indicated that the PIP does appear to measure
the construct of independence. Cluster analysis of its Psychological Self-Reliance,
Perceived Control, and Physical Functioning subscales identified a three-cluster
solution of basic independence profiles: A - independently minded/less
disabled, B - independently minded/more disabled, and C - nonindependently
Potter CG, Smith QW, Quan H, Nosek MA. Delivering independent living services in rural communities: Options and alternatives. Rural Special Education Quarterly 1992;11(1):16-23.
ABSTRACT The authors describe independent
living initiatives in two rural communities, chosen because of their contrast
in approach to reducing barriers to independence. Various factors in rural
areas present obstacles to independent living, including lack of transportation,
reduced employment opportunities, and architectural inaccessibility in
older buildings. Results of a follow-up study of two rural independent
living demonstration projects established by the Independent Living Research
Utilization program in Houston, Texas are presented. In brief, people in
Town One successfully established and continue to operate an independent
living center; the other site (Town Two) integrated independent living
philosophy and practices into the existing service network. Information
is provided concerning demographic characteristics as well as existing
services related to independent living. The authors suggest that several
approaches for reducing barriers to independence are successful for delivering
independent living services in rural communities.
Nosek MA, Fuhrer MJ, Hughes SO. Perceived counselor credibility by persons with physical disability: Influence of counselor disability status, professional status, and the counseling content. Rehabilitation Psychology 1991;36(3):153-61.
ABSTRACT Tested the perceptions, by persons
with physical disability, of the influence of counselor disability status,
counselor professional reputation, and counseling content on counselor
credibility. Three independent living centers recruited 71 volunteers with
mobility impairments as participants. They viewed four photographs that
included each counselor's professional credentials, and listened to an
audiotape containing a counseling problem, one that was disability related
and one that was not. The subjects then rated each counselor's experience,
expertness, interest, understanding, and ability. Counselors with disabilities
were rated more favorably overall than counselors without disabilities,
particularly when the counseling content was disability related and when
counselors were depicted as nonprofessional.
Fuhrer MJ, Rossi D, Gerken L, Nosek MA, Richards L. Relationships between independent living centers and medical rehabilitation programs. Archives of Physical Medicine and Rehabilitation 1990;71:519-22.
ABSTRACT A survey of independent living
centers (ILCs) and medical rehabilitation programs (MRPs) with cooperative
relationships was conducted to (1) document the extent of kinds of relationships
that exist and (2) identify factors that are reported to impede or facilitate
those relationships. A questionnaire was mailed to 83 ILCs that are listed
in the ILRU Registry of Independent Living Programs and that reported having
a relationship with one or more MRPs. Subsequently, another questionnaire
was sent to the MRPs with which each ILC reported having a relationship.
Usable questionnaires were received from 46 ILCs. In descending order,
the most frequently reported relationships were (1) making referrals to
or supplying information about MRPs, (2) providing peer counseling services,
and (3) conducting training in daily living skills for medical rehabilitation
patients. Mean ratings of satisfaction with the various kinds of relationships
were relatively high. The three most frequently reported barriers to stronger
relationships were conflicting approaches of service delivery, funding
of services, and conflicting program philosophies. Using information from
a database describing ILCs, it was found that ILCs with MRP relationships
served significantly more consumers than centers not having such relationships.
According to results provided by 25 MRPs, patients with spinal cord injury
most frequently received services by staff members of ILCs, with peer counseling
being the most frequently provided service.
Nosek MA, Davidson K, Zhu Y, and Howland CA. Relationship between compliance with federal standards for independent living centers and diversity and amount of funding. Rehabilitation Counseling Bulletin 1992;35:190-9.
ABSTRACT The effects on funding of standardizing
the independent living center (ILC) model were examined. A repeated measures
analysis of variance was conducted to examine the relationship between
compliance with the four minimum criteria operationalized from Title VII
of the Rehabilitation Act and the diversity of funding sources and total
annual budgets of independent living programs (ILPs) in 1984, 1986, and
1988. Of the 55 ILPs with complete information about funding diversity,
15 met the four minimum criteria in all three years, 8 never met the standards,
and 32 did so in one or two of the years. More programs tended to become
compliant over time, but funding became more diverse over time regardless
of whether programs complied with federal standards. The group that complied
over the entire study period had the most diverse funding. When adjusted
for inflation to 1988 dollars, the mean total funding of ILPs has been
rising steadily since 1984. Thus, time, but not compliance, was found to
be a significant factor in total budget.
Nosek MA, Roth PL, Zhu Y. Independent living programs: The impact of program age, consumer control, and budget on program operation. Journal of Rehabilitation 1990;56(4):28-35.
ABSTRACT This study 1) reports the results
of an effort to comprehensively describe independent living programs and
2) examines the impact of age of program, consumer control, and budget
size on the operation of independent living programs. Results indicate
that there exists a wide diversity of program characteristics. The profile
of a typical program is given. Older programs tend to be distinguished
by a more diverse funding base. Programs with higher levels of consumer
control of the board of directors tended to have more staff with disabilities,
engage in more advocacy activities, and participated in networks. Programs
with larger budgets are more likely to offer residential housing services
and are less active in advocacy and awareness activities.
Nosek MA, Jones SD, Zhu Y. Levels of compliance with federal requirements in independent living centers. Journal of Rehabil-itation 1989; 55(2):31-7.
ABSTRACT A study of 163 independent living
programs examined levels of compliance with key requirements of Title VII,
the independent living provision of the 1978 Rehabilitation Act. Only 51%
of programs receiving funds met requirements for consumer involvement in
direction, management, and service delivery. There was no relationship
between compliance and receipt of Title VII funds or amount of Title VII
funds received. It was also shown that complying programs offer significantly
more services and serve significantly more persons than non-complying programs.
These findings have strong implications for federal policy and funding
in the independent living area.
Nosek MA, Parker RM, Larsen S. Psychosocial independence and functional abilities: Their relationship in adults with severe musculoskeletal impairments. Archives of Physical Medicine and Rehabilitation 1987;68:840-5.
ABSTRACT Personality traits, functional abilities, and demographic characteristics of 61 persons with severe musculoskeletal impairments were examined using a personality factors questionnaire, the Barthel Index, and a demographic questionnaire. Subjects were grouped by high or low scores on the personality factors scale (psychologic independence) and an independent living scale (social independence). Data were analyzed using correlations, chi-squares, analyses of variance, factor analyses, and discriminant analyses. Subjects with high psychologic independence tended to live in less restrictive settings, had fewer communication problems, and spent less time in comprehensive rehabilitation facilities. Those with high social independence tended to be married; have assertive, self-assured, and self-sufficient personalities; more education; and more earned income. Both groups of highly independent persons tended to have hired attendants, good health, and more transportation options. They were outgoing, predominantly female, and tended to perceive themselves as independent. Functional abilities were not significantly related to levels of psychologic and social independence.
Personal Assistance Services
Nosek MA, Foley CC. Personal assistance: A key to employability. Directions in Rehabilitation Counseling 1995; 6(5): 1-9.
ABSTRACT A significant number of Americans
with disabilities have limited employment opportunities because of a lack
of reliable, affordable personal assistance. Rehabilitation counselors
often see clients who receive state agency support for paid personal assistance
services while they are in school; however, once they graduate, the clients
are unable to secure employment salaries at levels that cover expense of
personal assistance services. In other situations, clients rely on family
members for personal assistance during schooling due to a lack of funds;
however, because of the continued lack of funds and an inexperience with
management of non-family assistants, difficulties arise when persons with
disabilities want to move away from home. This lesson answers the following
questions: What is personal assistance? How is it used by persons with
disabilities? How effective are the various options for obtaining personal
assistance? How does the availability of personal assistance affect employability?
Recommendations for rehabilitation counselors on how to assist their clients
to meet personal assistance needs more effectively are provided.
Nosek MA, Fuhrer MJ, Potter CG. Life satisfaction of people with physical disabilities: Relationship to personal assistance, disability status, and handicap. Rehabilitation Psychology 1995;40(3):191-202.
ABSTRACT To understand how physical disability
affects life satisfaction, the present study focused on possible moderating
factors that are associated with those conditions and with life satisfaction.
Three possible moderating factors were investigated: (1) level of disability,
(2) level of handicap, and (3) self-appraised adequacy of personal assistance.
A sample of 45 persons with a variety of physical disabilities who use
personal assistance was given the Life Satisfaction Index - A, selected
subscales from the Arthritis Impact Measurement Scale, the Craig Handicap
Assessment and Report Technique, and a 19-item measure of personal assistance
satisfaction. There were significant positive correlations between life
satisfaction and both handicap and personal assistance satisfaction. Life
satisfaction and degree of disability were not significantly correlated.
There was no interaction between disability and personal assistance satisfaction
with respect to either life satisfaction or handicap. Results are discussed
in terms of Diener's "bottom-up" theory and the complex array of factors
that contribute to personal assistance satisfaction.
Nosek MA. Personal assistance: Its effect on the long-term health of a rehabilitation hospital population. Archives of Physical Medicine and Rehabilitation 1993;74(2):127-32.
ABSTRACT After discharge from a rehabilitation
hospital, persons with severe disabilities may not be able to maintain
health effectively without adequate personal assistance with activities
of daily living. Techniques of qualitative analysis were used to assess
interview results based on the observations of 41 physicians, physical
therapists, occupational therapists, social workers, and nurses in five
rehabilitation hospitals. A positive relationship was found between the
adequacy of personal assistance and the ability of individuals disabled
primarily by stroke, spinal cord injury, or traumatic brain injury to maintain
good physical and mental health. The most commonly cited health problem
was skin breakdown, followed by urinary tract infections, pulmonary infections,
and contractures. Inadequate personal assistance also led to extended hospital
stays, threats to safety, poor nutrition, and poor personal hygiene. Reliance
on family alone for assistance was considered inadequate, common adverse
effects including burnout, family role changes, and economic strain. Persons
with the best health combined assistance by relatives and unrelated persons.
Recommended is the establishment of a comprehensive system capable of coordinating
service delivery from home health agencies, independent living centers,
and rehabilitation hospitals.
Nosek MA, Fuhrer MJ, Rintala DH, Hart KA. The use of personal assistance services by persons with spinal cord injury: Policy issues surrounding reliance on family and paid providers. Journal of Disability Policy Studies 1993;4(1):89-103.
ABSTRACT Previous discussions of personal
assistance have focused on census data and descriptions of service programs.
The current study examines patterns of usage of personal assistance among
a community-based sample of 284 persons with spinal cord injury and how
these patterns relate to other aspects of their lives. Expected significant
relationships were found among variables of who provides assistance, whether
they are paid, and with whom participants live, and between the amount
of assistance received and severity of disability. Unexpectedly high rates
of use of unpaid nonrelatives and paid relatives were found, as was the
use of a combination of relatives and nonrelatives and assistants. Use
of nonrelatives increased with education level. The effect of usage pattern
on productivity could not be examined due to a staggeringly high unemployment
rate (89%). Implications of these results for development of a national
policy on providing personal assistance services, the expansion of formal
service delivery systems, and the further investigation of the use of personal
assistance are discussed.
Nosek MA, Howland CA. Personal assistance services: The hub of the policy wheel for community integration of people with severe physical disabilities. Policy Studies Journal 1993;21(4):789-800.
ABSTRACT The success of persons with
severe physical disabilities in living independently in the community,
engaging in self-directed productive activities, and staying healthy depends,
in part, on getting and maintaining adequate personal assistance with basic
tasks such as getting out of bed and tending to personal hygiene. Although
few policymakers would disagree with the contention that many people with
disabilities need assistance with daily tasks, there is considerable debate
about who should provide assistance, what services should be included,
who should pay, who should be entitled to publicly provided and paid services,
how much assistance should be provided, and who should control its administration.
The prevailing model for delivery of personal assistance services has been
primarily medical, with control of services by health care professionals,
rather than independent living, with control by consumers receiving services.
Traditionally there has been an institutional bias of funding for disability-related
service, despite its much higher expense than community-based personal
assistance services and its violation of basic human rights. Proponents
of various solutions to health care reform have given little consideration
to the provision of support services for people with disabilities. The
advantages of implementing a uniform national system for the delivery of
personal assistance services based on consumer control are discussed.
Nosek MA. The personal assistance dilemma for people with disabilities living in rural areas. Rural Special Education Quarterly 1992;11(1):36-40.
ABSTRACT Persons with physical disabilities
who live in rural areas and require personal assistance in order to function
face almost overwhelming barriers to pursuing independent lives. From the
time of onset of disability, families assume the major responsibility for
meeting their personal assistance needs. Often individuals with disabilities
are poorly prepared to manage this need for themselves, lacking information
and experiencing severe limitations in financial and human resources. The
author presents information on personal assistance and methods used by
people with physical disabilities to meet their need for personal assistance,
and discusses the special assistance-related problems faced by people living
in rural areas.
Nosek MA. Relationships between personal assistance and productivity among Japanese adults with severe physical disabilities. Rehabilitation Counseling Bulletin 1991;35(2):105-18.
ABSTRACT As independence becomes an increasingly
prominent goal of persons with disabilities, the demand for information
that relates to its enhancement correspondingly becomes greater. Over the
past 10 years, the concept of independent living in the United States has
had a significant influence on organizations of individuals with disabilities
in Japan. With the support of the philanthropic arm of Japanese industry,
a cadre of people with disabilities has traveled to the U.S. and participated
at length in independent-living programs, instigating a burgeoning independent
living movement in Japan. There are many factors that contribute to an
individual's independence, such as equipment, transportation, housing,
community accessibility, and education. Personal assistance plays a pivotal
role in the survival, sustenance, and independence of people with severe
disabilities, as well as in maintaining a foundation for achieving the
maximum benefits of education and rehabilitation. Because productivity
is generally regarded as the most basic indicator of independence in both
the U.S. and Japan, it has been chosen as the outcome variable by which
to measure an individual's independence. The purpose of the current study
was to examine the use of personal assistance by a sample of Japanese adults
with severe physical disabilities and the relationship between their use
of personal assistance and their level of productivity.
Nosek MA. Personal assistance services: A review of the literature and analysis of policy implications. Journal of Disability Policy Studies 1991;2 (2):1-17.
ABSTRACT Affordable, attainable, high-quality
personal assistance services could enable millions of people with severe
physical disabilities to lead productive and independent lives. Indeed,
the degree to which these services are available and adequate in large
part determines the potential of such persons to be employed and to be
active participants in community life, regardless of the individual's inherent
capability to achieve these goals. This article defines and estimates the
need for such services and reviews literature that addresses issues of
funding and service delivery mechanisms. The article analyses implications
of a public policy focus on redirecting existing funding channels, the
possibility of incorporating consumer control and other independent living
concepts and techniques into existing service structures, the impact of
reliance on family, and methods for making services available to a large
segment of the population in need.
Nosek MA. Personal assistance: Key to employability of persons with physical disabilities. Journal of Applied Rehabilitation Counseling 1990;21(4):3-8.
ABSTRACT A significant number of people with disabilities in America have the skills and motivation to work, but are limited in employment potential by a lack of reliable, affordable personal assistance to help them meet their daily needs. Rehabilitation counselors frequently work with clients who have no concept of how they can have the assistance they need without public financial support or with less reliance on family when they become employed. This article presents basic information on what personal assistance is, how it is used by persons with disabilities, and how it affects employability. It gives recommendations for rehabilitation counselors on how they can assist their clients to meet more effectively their need for personal assistance by helping them (a) assess the adequacy of current arrangement for receiving personal assistance, (b) specify needs if a change in arrangement is necessary or desirable, (c) identify relevant aspects of the individual's personality and cognitive abilities, (d) explore various methods for meeting and financing needed services, (e) change arrangements if desired, and (f) develop a backup support network.
Nosek MA, Rintala DH, Young ME, Howland CA, Foley CC, Rossi D, Chanpong G. Sexual functioning among women with physical disabilities. Archives of Physical Medicine and Rehabilitation 1996;77:107-15.
ABSTRACT A three-year study examined
sexual functioning among women with physical disabilities in comparison
to women without disabilities. A questionnaire consisting of 311 items
containing 1011 variables was mailed to approximately 1,150 women with
physical disabilities recruited as volunteers or through independent living
centers. Each woman was asked to give a second copy of the questionnaire
to one of her able-bodied female friends. Responses were received from
506 women with disabilities and 434 women without disabilities, yielding
a 45% response rate. Marital status findings confirm reports in the literature
that women with disabilities are more likely to be single; however, difference
in rates of marriage, living together with a significant other, and divorce
in this study were not found to be as large as reported elsewhere. Women
with disabilities were much less likely to have natural children. Rates
of homosexuality were similar. Data were analyzed systematically using
multivariate regression and analysis of variance. There were significant
differences in level of sexuality, response, and satisfaction between women
with and without disabilities. While no differences were found between
the groups on sexual desire, women who had childhood onset of disability
reported higher levels of sexual desire. Sexual desire among women with
disabilities was most related to social status variables, including work
status and age, and secondarily by perception of negative social stereotypes.
the strongest predictor of sexual activity was whether or not the woman
lived with a significant other. Secondary predictors were positive sexual
self images and perceptions of being approachable by potential romantic
partners. Severity of disability was not significantly related to level
of sexual activity. The only significant relationship with sexual response
was type of disability, with woman who have spinal cord injury and stroke
reporting the lowest scores. Social status and psychological variables
were the best predictors of sexual stisfaction. Women with disabilities
who lived together with a significant other, and therefore had a higher
level of sexual activity, also reported greater sexual satisfaction. Lower
household income was positively associated with sexual satisfaction. Women
who felt less sensitive about their use of assistive devices and who had
never experienced sexual abuse reported higher levels of satisfaction.
There is a strong need to investigate ways in which the social environment
responds to disability, the effect this environment has on the development
of self esteem and sexual self-image, and how these influences affect levels
of sexual functioning in women with physical disabilities.
Nosek MA. Wellness among women with physical disabilities. Sexuality and Disability 1996;14(3):165-82.
ABSTRACT Wellness and disability, used
in the same sentence, could seriously disrupt the status quo in health
care. Traditionally, disability has been equated with illness. Indeed,
many children and adults with disabilities were relegated to hospital wards
for the long term when I was growing up in the 1950s because society was
simply not equipped to deal with disability as a normal part of life. This
had very little to do with disease states; it had to do with attitudes
and physical barriers. With congressional passage of such liberating laws
as the Architectural Barriers Act of 1965 (PL 90-480), the Education of
All Handicapped Children Act of 1975 (now known as the Individuals with
Disabilities Education Act, (PL 101-476), section 504 of the Rehabilitation
Act (PL 93-112) which was finally implemented in 1977, and our crowning
glory, the Americans with Disabilities Act of 1990 (PL 101-336), we have
begun tearing down these physical barriers. Barriers of attitude, however,
need much more than a jackhammer and cement to bring them down. Although
we are experiencing some progress in removing discrimination on the basis
of disability in education, employment, and public services, the mind-set
of medical professionals is more deeply rooted in tradition and has been
slower to response. There is a new wave of change in medical practice,
however, that focuses on wellness and the whole person. This article presents
the notion of wellness in disability as an operating principle and reviews
the findings of our study of the population most damaged by traditional
medical stereotypes, namely, women. When disability is equated with illness,
all of the associations made with illness are called into play. Persons
who are ill, for example, are exempt from normal responsibilities, are
not expected to be productive, are perceived as victims of a horrible disease
process, and are expected to comply with the orders of persons who are
experts in that disease process (DeJong, 1979). For women, this has the
effect of neutralizing their femininty, creating the perception they are
gender-free (Adcock & Newbigging, 1990; Danek, 1992, Lesh & Marshall,
1984), have no need for intimacy and sexual expression and are incapable
of being a sexual partner (Hanna & Rogovsky, 1991; 1992), and have
no need for reproductive health care services. One woman with a severe
physical disability who was interviewed for our study commented, "I always
felt like a neutral sex. It's like I'm not a woman, not a man, I don't
know what I am because I was never approached like a woman...." The current
grassroots emergence of publications targeting women with disabilities
(ABLED, It's OK!) and the growing national network of advocacy organizations
of women with disabilities (e.g., WISE in Baltimore, Maryland; the New
Jersey Coalition of Women with Disabilities; the Networking Project for
Disabled Women and Girls in New York) signals a rising rebellion against
the asexual, medical stereotype. This chapter describes a study of women
with disabilities and analyzes the data from a wellness perspective.
Nosek MA, Howland CA, Young ME, Georgiou D, Rintala DH, Foley CC, Bennett JL, Smith Q. Wellness models and sexuality among women with physical disabilities. Journal of Applied Rehabilitation Counseling 1994;25(1):50-58.
ABSTRACT This article considers sexuality
among women with physical disabilities from a wellness perspective by presenting
the results of the first phase of a 3-year, NIH-funded study. This phase
was a qualitative study using semi-structured interviews with 31 women
with a variety of physical disabilities, representing diverse racial and
ethnic minorities and socioeconomic levels. Analytic induction and constant
comparison were used for data analysis. Preliminary results show that,
from a wellness perspective, the areas of sexuality identified in the data
analysis can be grouped into 5 domains: 1) having a positive sexual self-concept,
2) having sexuality information, 3) having positive, productive relationships,
4) managing barriers (social, environmental, emotional, physical, and sexual
abuse), and 5) maintaining optimal health and physical sexual functioning.
These findings are compared to the various components of wellness models,
including physical, psychological, spiritual, developmental, and sociocultural,
with a discussion of implications for scientific research and policy-making.
Nosek MA, Howland CA, Rintala DH, Young ME, and Chanpong GF. National Study of Women with Physical Disabilities: Final Report. Houston: Center for Research on Women with Disabilities, 1997.
ABSTRACT The study examined a broad range of issues facing women with physical disabilities. It consisted of two phases. Phase I was a qualitative interview study of 31 women with physical disabilities which helped us understand all the various aspects of sexuality from the point of view of the woman with a disability. Quotes from these women are scattered throughout the report. The themes we identified in these interviews fell into six basic domains: 1) sense of self , 2) relationship issues, 3) information about sexuality, 4) sexual functioning, 5) abuse, and 6) general and reproductive health. With the assistance of national and local advisors, including consumers, researchers, medical professionals, social workers, and educators, the research team developed a questionnaire that represented all the primary themes from the qualitative study and issues raised in the literature. In Phase II, we identified 1,150 women with physical disabilities around the country who volunteered to participate in the study or who were recruited through independent living centers in each federal region. We sent each of them two copies of this questionnaire, one for her to complete and one for her to give to an able-bodied female friend to complete. We received responses from 45% of this sample, or a total of 946 women, 504 of whom had physical disabilities and 442 who did not have disabilities.
Department of Physical Medicine and Rehabilitation
Baylor College of Medicine
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Last update: 1/5/1999
Copyright © 1999 Baylor College of Medicine