Intellectual Disabilities
Women's Health and Related Issues
Walsh, P.N., Heller, T., Schupf, N., &
van Schrojenstein Lantman-de Valk, H. & Working Group
A Report of the Aging Special Interest Research Group of the International
Association for the Scientific
Study of Intellectual Disabilities
January 2000
Submitted to the World Health Organization
Geneva, Switzerland
Acknowledgments
Working Group Members: The
Report was prepared by a core team composed of Tamar Heller (USA), Nicole
Schupf (USA), Henny van Schrojenstein Lantman - de Valk (N L), and Patricia
Noonan Walsh (IRL) working in collaboration with the following colleagues:
Kathie Bishop (USA), Nancy Breitenbach (FR), Allison Brown (USA), Janis
Chadsey (USA), Orla Cummins (IRL), Carol Gill (USA), Loretto Lambe (UK),
Barbara LeRoy (USA), Yona Lunsky (CA), Michelle McCarthy (UK), Dawna Mughal
(USA), Jenny Overeynder (USA), Pat Reid (NZ), Heidi San Nicholas (GUAM),
Janene Suttie (AUS), and Kuo-yu Wang (TAIWAN). The authors gratefully thank
Robert Cummins, Deakin University, Australia, for his careful reading of
an earlier version of this report and his very helpful comments; Marianne
Vink for information communicated personally; and all those contributors
who held focus group meetings in a variety of nations (including Australia,
Canada, the United Kingdom, South Africa, and the United States) and who
shared the results of these focus group meetings with us. We are especially
grateful to the participants in the Geneva Roundtable in April 1999 for
their advice and support
This report was developed as a draft and
circulated to both Health Issues and Aging SIRG working group members and
selected others for commentary and amendments. The amended document became
part of the working drafts circulated to delegates at the 10th
International Roundtable on Aging and Intellectual Disabilities in Geneva
in 1999, and was discussed and amended further at this meeting. A set of
summative broad goals was developed by the group and appears in this paper,
which itself became part of the comprehensive WHO document on aging and
intellectual disability (WHO, 2000). The primary goal of this paper is
to organize information on women's health issues in older women with intellectual
disabilities, and to present broad summative goals to direct further work
in this area.
Partial support for the preparation of
this report and the 1999 10th International Roundtable on Aging
and Intellectual Disabilities was provided by grant 1R13 AG15754-01 from
the National Institute on Aging (Bethesda, Maryland, USA) to M. Janicki
(PI).
Suggested Citation
Walsh, P.N., Heller, T., Schupf, N., &
van Schrojenstein Lantman-de Valk, H. & Working Group (2000). Healthy Aging - Adults
with Intellectual Disabilities: Women's Health Issues. Geneva, Switzerland:
World Health Organization.
Report Series
1 #1 Evenhuis, H., Henderson, C.M., Beange,
H., Lennox, N., Chicoine, B., & Working Group. (2000). Healthy Aging
- Adults with Intellectual Disabilities: Physical Health Issues. Geneva,
Switzerland: World Health Organization.
#2 Walsh, P.N., Heller, T., Schupf, N.,
van Schrojenstein Lantman-de Valk, H., & Working Group. (2000). Healthy
Aging - Adults with Intellectual Disabilities: Women's Health Issues.
Geneva, Switzerland: World Health Organization.
#3 Thorpe, L., Davidson, P., Janicki,
M.P., & Working Group. (2000). Healthy Aging - Adults with Intellectual
Disabilities: Biobehavioral Issues. Geneva, Switzerland: World Health
Organization.
#4 Hogg, J., Lucchino, R., Wang, K.,
Janicki, M.P., & Working Group (2000). Healthy Aging - Adults with
Intellectual Disabilities: Aging & Social Policy. Geneva: Switzerland:
World Health Organization.
#5 Janicki, M.P., & Breitenbach,
N. (2000). Healthy Aging - Adults with Intellectual Disabilities: Summative
Report. Geneva: Switzerland: World Health Organization.
1.0 Background
1.1 This
report is concerned with issues which are important for the health of women
with intellectual and developmental disabilities as they grow older and
age. The specific focus on women's health is in no manner meant to be dismissive
or designed to minimize concerns related to men's health issues. However,
it is the position of the SIRG on aging that women's health issues have
not received appropriate and sufficient attention, that women as they age
are subject to sex-related conditions and changes, and that in many instances
the interests and needs of aging women and women with disabilities are
overlooked or neglected. Thus, this report is designed to explore factors
related to well-being and quality of life for women, to examine and define
sex-linked differences in their life experiences and opportunities and
to define their distinctive vulnerabilities -including research on health
status and access to health care.
2.0 Women's Health - a Global Perspective
2.1 The human rights of women and girl
children are an integral part of universal human rights, according to the
UN Vienna Declaration. Ensuring their full and equal participation in all
aspects of life in society, without discrimination of any kind, is a priority
objective for the international community. The United Nations Commission
on the Status of Women promotes the well-being and education of the girl
child as a priority for global action in its policy documents (1998). Further,
the UN Standard Rules identify the availability of suitable medical and
health care as an essential perquisite if people with disabilities are
to enjoy equal opportunities in the societies where they live (UN 1994).
2.2 Regional policies have adopted human
rights as the basis for all actions related to the lives of persons with
disabilities. Social policy within the European Union of 15 countries has
replaced traditional care models of disability with a rights-based model.
Human rights are expressed as equal opportunities for all citizens, particularly
those with disabilities, to take part fully in all aspects of everyday
life in their own societies (CEC 1996). A respect for human diversity should
thus inform all aspects of social planning.
2.3. The WHO - Global Strategy on the
promotion of women's health falls within this rights-based framework: The
right of all women to the best attainable standard of health - as well
as their right of access to adequate health services - has been a primary
consideration of the World Health Organization (OFCHR 1997:10)
2.4 There have been dramatic increases
in life expectancy during the 2Oth century, due chiefly to tremendous advances
in medicine, public health, science and technology. However, the quality
of human life is as important as its length - perhaps even more important.
Today, individuals are concerned about their health expectancy - that is,
the years they can expect to live in good health (WHO 1997b). Inequalities
exist, based on sex, region and social status. The poorest, least educated
people live shorter lives with greater ill-health. Globally, while life
expectancy increases, disability-free life expectancy seem to be stabilizing.
2..5 Priority areas for international
action in health should be: a comprehensive chronic disease control package
incorporating prevention, diagnosis; treatment and rehabilitation and improved
training of health professionals; fuller application of existing cost-effective
methods of disease detection and management, a global campaign to encourage
healthy lifestyles; research into new drugs and vaccines and the genetic
determinants of chronic diseases; and alleviation of pain, reduction of
suffering and provision of palliative care for those who cannot be cured
(WHO 1997b:136).
3.0 Lifespan Perspective: Aging and
Health
Recently, more attention has been given
to the personal and social development of girls and women with developmental
disabilities throughout the lifespan. This approach attempts to understand
their experiences and their engagement with the tasks considered appropriate
in their family and culture at each transitional stage - infancy, childhood,
adolescence, early - middle - and late adulthood, and old age. For example,
young women in many industrialized societies typically complete formal
schooling and/or vocational training, find employment, achieve full citizenship
and build personal friendships and intimate relationships. Some may establish
homes and start childbearing. Women in late adulthood who have been employed
may retire from the active workforce, attend more to personal interests
- depending on their income and talents - and perhaps devote themselves
to grandchildren or other family concerns. And as they age, women and men
increasingly value good health and the independence and mobility it brings.
3.1 Populations are ageing. The number
of people aged 65 years and above account for 7% of the world's population:
two-thirds (65%) of those aged 80 and above are female. Global strategies
must take gender differences into account. A major challenge will be to
develop innovative ways of tackling the special health and welfare problems
of elderly women (WHO 1997b:11). >From the perspective of the WHO, healthy
aging is a global priority. The need to focus on promoting health and minimizing
dependency of all older people is a principle of action common both to
more developed countries - where 12.6% of the population is elderly - and
to developing countries - where only 4.6% is elderly (WHO 1995:2).
3.2 Gender and health. The differential
impact of gender on health is not static; rather it reveals itself as the
individual grows and develops throughout his or her lifespan. Many risks
to health are age-related: Men die earlier, while women experience greater
burdens of morbidity and disability. Women constitute the majority of both
the carers and the older users in the health sector. Supporting the female
carers is a key health policy challenge (WHO 1995:6.1.5).
3.3 UN emphasis. The special situation
of women is highlighted in current programs for older persons within development
planning. 1999 has been named the International Year of Older Persons with
the theme, "Towards a Society for All Ages." A society for all ages recognizes
the rights and responsibilities of all age groups and makes it possible
for older persons to live healthy, productive, economically secure lives
(UN 1997: SG/5M16339 - OBVII 1).
3.4 Gender is recognized as a determinant
of health. A gender approach to health includes an analysis of how different
social roles, decision-making power and access to resources affect health
status and access to health care. The special needs of women and current
inequalities in delivery of health care are apparent. The WHO has targeted
increasing its efforts towards: (1) advocacy for women's health and gender-sensitive
approaches to health care delivery and development of practical tools to
achieve this; promotion of women's health and prevention of ill-health;
(2) making health systems more responsive to women's needs; (3) policies
for improving gender equality; and (4) ensuring the participation of women
in the design, implementation and monitoring of health policies and programs,
in WHO and within countries (WHO 1997b:83).
3.5 Health status. Data gathered about
the health of women living in developed nations indicate that while these
women live on average up to about 80 years, many die prematurely before
the age of 65 due to accidents or diseases which could largely be avoided
by healthier living or early detection. Special health issues are important
to women at different stages of their lives. Eating disorders have serious
consequences for younger women, adult women confront health problems related
to HIV and AIDS, and among elderly women, the rising incidence of osteoporosis
has become a chief concern for women (CEC 1997:8). In contrast, the health
status of adult women in the developing nations is often compromised, resulting
in shorter life expectancies, greater rates of illness or disability-related
conditions. poorer nutrition, and a greater incidence of problems more
related to earlier life stages.
3.6 Policy focus on women's health. Policy-makers
may embed the distinctive health needs of women throughout the lifespan
in national health strategies. For example, in Ireland, the Department
of Health formed a plan for women's health in consultation with many individual
women and women's groups throughout the country. The plan, which is in
keeping with WHO targets for the health of women, recognizes that some
groups of women - those with disabilities, for example -face particular
challenges to maintaining good health. Lack of information, lack of access
to services and special difficulties related to advice about sexual and
reproductive health were identified. The Irish Government document recommends
direct consultation with women who have disabilities themselves in order
to develop appropriate services (Government of Ireland 1997:63)
4.0 Health, Ageing and Intellectual
Disabilities : Cross-Cultural Contexts
4.1 Increased longevity and improved
services of all kinds have led to an unprecedented growth in the population
of persons with intellectual disabilities. It is estimated that as many
as sixty million persons in the world may have some level of intellectual
disability (WHO 1997b).
Older people with intellectual disability
have significant physical health needs (Cooper 1998; van Schrojenstein
Lantman-de Valk 1998, inter alia). The health of individual men and women
with disabilities as they grow older will reflect the social and economic
circumstances shaping their daily experiences. Their fortunes may be especially
at risk relative to those of their peers or family members. "It is in situations
of dire poverty that household members are subjected to neglect, and people
with disabilities are particularly vulnerable (Whyte and lngstad 1998:
43).
4.2 Access to health care. Informants
from developing, rural or remote regions report that greater access to
health care, information, proper treatment protocols, and the like, would
all greatly enhance longevity. Many individuals with more severe disabilities
do not survive the early childhood years. There may be no surgeons, or
no facilities for neonatal care, and poor health outcomes for the elderly.
In the Pacific region, for example, diseases such as Hanson's disease (leprosy),
measles, and dengue fever may be lethal. Given generally poor access to
health resources, the population of people with intellectual and developmental
disabilities is more likely to be stricken and affected by threats from
disease. Cultural differences also influence health care across the lifespan.
Local healers and natural medicines may be a mainstay for a community.
Further, cultures vary in their understanding of, and attitudes toward,
elders, as well as toward women. Such attitudes may influence the availability
and accessibility of health care for older women.
4.3 Socioeconomic contexts. Thus, healthy
ageing does not arise and maintain itself in a vacuum. Social, political
and economic environments interact with the daily lives and experiences
of individuals in a given society. Efforts to promote their health and
well being reflect this complex interaction. The quality of daily life
experienced by individuals both reflects and contributes to the quality
of the society in which they live. Providing political environments which
foster healthy social relationships, trust, economic security, sustainable
development and other factors related to advancing the health and well-being
of citizens has been identified as a priority for governments. The quality
of social relationships in a society has been documented as part of health
outcomes: healthier communities with greater social cohesion produce healthier
citizens (Lomas 1997). These and other factors make up a country's social
capital, an essential factor if states are to achieve the priorities for
effective health promotion which are listed in the Jakarta Declaration,
such as increased investment in health development particularly for needy
groups (Cox 1997:3).
5.0 Health and Aging: Women's Health
and Related Issues
5.1 In preparing this report, two key
questions were posed in order to inform those charged with implementing
global, regional and national health strategies including the needs of
women with intellectual disabilities. These questions were (1) What is
the current knowledge base about the health of women with intellectual
disabilities across the lifespan, especially among older women? (2) What
are the practices most effective in promoting good health and satisfaction
with services among women with intellectual disabilities?
Three kinds of evidence were used to
compile this report. First, information about global and regional trends,
demographic patterns and socio-economic indicators were drawn from a range
of policy and research documents published by bodies such as the World
Health Organization and other groups (Sections 2,3 and 4). Second, research
literature in scientific publications was reviewed and three summaries
were prepared: these appear in Sections 6.1, 6.2 and 6.3. Third, colleagues
in many countries contributed background information about local conditions
in their parts of the globe. Qualitative data were yielded by focus groups
and other consultative meetings of women with intellectual and developmental
disabilities, their families, advocates and professional workers in many
countries. The themes which emerged about their experiences of health care
and promotion appear in Section 7.
The final section of this report, Section
8, includes recommenda-dations for research, policy and practice.
6.0 Summary Reviews Of Literature
Research summaries related to women's
health and aging are organized across four topic areas and appear in the
following three sections. The editors' initials appear in parentheses.
The first section (6.1) reviews evidence about cancer and sexual health
(H. van S L- de V) and reproductive health (NS). The second (6.2) focuses
on promoting health among ageing women with intellectual disabilities (TH),
and the third section (6.3) addresses the social, economic and cultural
contexts of health (PNW).
6.1 Physical Health And Ageing
6.1.1 Menstruation
6.1.1.1 Among women with intellectual
disabilities, the average age at onset of menarche is similar to that of
women in the general population. Most appear to have regular menstrual
cycles. Recent studies of gonadal function in women with Down syndrome
have found distributions of age at menarche and frequencies of women with
regular menses that are much closer to those found in the general population
than had been presumed from earlier studies (mostly of institutionalized
women). Between 65% and 80% of women with Down syndrome have regular menstrual
cycles, while 15 to 20% have never menstruated.
6.1.1.2 Methodological problems in studies
of hormonal status during menstrual cycles in women with Down syndrome
and other intellectual disabilities include small sample sizes, sampling
of only a few cycles, and lack of control for the stage of menstrual cycle
at which the blood sample was drawn. Nonetheless, international studies
have generally supported the conclusion that most cycles show evidence
of ovulation and formation of a corpus luteum, suggesting that gonadal
endocrine function is within normal ranges in the majority of women with
intellectual disability.
6.1.1.3 Many women with intellectual
disability are treated with psychotropic medication and/or anti-epileptic
drugs (AEDs). Psychotropic medications can interfere with a number of hormonal
and metabolic functions. A common finding is hyperprolactinemia in association
with neuroleptic drug use. Prolonged elevations in prolactin can lead to
declines in follicular (FSH) and luteinizing hormone (LH) release, leading
to declines in ovarian function. Reduced gonadal function may lead, in
turn, to menstrual disturbances, including amenorrhea or infertility and
reduced estrogen release which may increase risk of age-related disorders
associated with reduced estrogen levels. Seizures and AEDs may also influence
memory and cognition through changes in neuroendocrine function. Elevated
levels of sex-hormone binding globulin, FSH and LH have been described
and long-term AED therapy has been associated with primary gonadal dysfunction
and increased risk of polycystic ovarian syndrome.
6.1.2 Sexual Health
6.1.2.1 Women with intellectual disability
have the same sexual needs and rights and responsibilities as do other
women. However, care personnel and other carers are not always adequately
educated on this issue and may seek to limit opportunities for sexual activity.
Older parents may tend to ignore the sexual needs of their children. In
many societies, general attitudes toward persons with disabilities and
toward women specifically may further serve to deny or trivialize sexual
health concerns. Unfortunately, such attitudes may also carry over to women
of older age and thus deny access to health services related to gynaecological
concerns and functions and may lead to a dearth of health professionals
who are willing or trained to address reproductive health issues.
6.1.2.2 People who are sexually active
are prone to sexually transmitted disease (STDs). Education on symptoms
of STDs and early treatment is necessary to avoid further transmission
and development of late-stage complications of the infection. Some STDs
are characterized by chronic pelvic pain, vaginal discharge and abdominal
pain, but other STDs may be present without clinical manifestations (e.g.,
65% of Clamydia infections). However, even when they are symptom-free,
infected women may transmit their infections and, untreated, may develop
severe complications. Infection with the HIV virus and development of AIDS
is of special concern. Currently, it appears that HIV in persons with intellectual
disability is mainly spread by men who have sex with men. However, because
many of these men also have sex with women, heterosexual spread of HIV
may be increasing, following the pattern seen in the general population.
6.1.2.3 Women with intellectual disabilities
need to be educated about safe sexual practices. Line drawings or pictures,
or other effective teaching materials, may be helpful in presenting safe
sex precautions and in initiating discussion about sexual activity in persons
with limited conceptual or verbal capacities. Women with intellectual disabilities
may have poor skills in negotiating safe sex even if they are motivated
to practice safe sex to avoid sexually transmitted diseases. Women with
intellectual disabilities are subjected to the same power discrepancies
as women in the general, and requests for safe sexual practices (e.g.,
condom use) may be difficult to impose. Furthermore, many women with intellectual
disability have low self esteem, making negotiations surrounding sexual
activity more difficult. Practical skills may also be a problem. Many persons
with intellectual disabilities have motor problems which limit their ability
to use condoms effectively, as well as poor understanding of their proper
use. Sexual education needs to include practice in condom diaphragm/pill
use with instruction adapted to the capacity of this population. It is
crucial to recognize profound cultural differences in sensitivity to the
content of such education for women and in recruiting and preparing care
staff and instructors.
6.1.3 Vulnerability and Protection
6.1.3.1 In addition, both men and women
with intellectual disability are more often victims of sexual abuse than
are persons in the general population. Most offenders are known to their
victims and may include care personnel and other carers, family members
or fellow residents who take advantage of the person's inability to defend
themselves or their lack of knowledge about their sexual rights. Because
of poor communication skills and lack of knowledge about their rights,
people with intellectual disabilities make also experience difficulty in
telling carers about the abuse. Such abuse may continue for years before
any signs are given. Education about sexual abuse should take place in
settings provided by carers who are familiar and respectful of the person
with an intellectual disability and who can encourage full and frank discussion
about abuse (see: McCarthy and Thompson 1998).
6.1.4 Fertility and Contraception
6.1.4.1 In a number of countries, women
with intellectual and developmental disabilities are as likely to marry
and to bear children as are their peers. While little research has addressed
fertility in women with intellectual disability, it is reasonable to assume
that most adults are fertile unless they have a disorder that affects genital
organs or brain regions responsible for hormones that regulate ovarian
function. For example, only a few births to men and women with Down syndrome
have been documented. In addition, in some countries a majority of women
with intellectual disabilities use some form of contraception. Oral contraception
is preferred, with low dose combinations of progestins and estrogens. Depot
progesterones are also widely used as contraceptives. Their advantage stems
from the fact that they need to be administered only four times a year.
However, irregular vaginal bleeding ("spotting") and effects on cholesterol
metabolism that might increase risk for coronary heart disease need to
be considered.
6.1.5 Therapeutic Amenorrhea
6.1.5.1 Therapeutic amenorrhea may be
used in women with intellectual disability who are unable to manage menstrual
hygiene effectively or in women who show self-injurious behavior related
to menstruation. The most common form of therapeutic amenorrhea is suppression
of menstrual cycles with lynestrenol. In one report, a Finnish gynaecologist
noted that 66% of his patients with intellectual disabilities had been
prescribed lynestrenol at some time in their life. Alternatively, endometrial
ablation, abrasion of the inner layer of the uterus, may be used to suppress
menstruation and establish therapeutic amenorrhea. More radical procedures,
such as hysterectomy (removal of the uterus) may also be used to prevent
pregnancy. In the past, sterilization was widely used to prevent pregnancy,
often without the consent of the person with an intellectual disability.
In more developed countries, guidelines for sterilization now require extensive
documentation of the medical rationale for the treatment, including documentation
of informed consent procedures.
6.1.5.2 Endometrial ablation, hysterectomy
and sterilization, while effective, are irreversible, raising legal and
ethical concerns about these procedures. Determination of the perceived
problems surrounding management of menstruation and/or fertility should
be medically documented and should be undertaken as much for the information
of the women herself as for the convenience of the carer.
6.1.6 Menopause
6.1.6.1 Very little is known about menopause
in women with intellectual disability. Limited studies have reported on
the median age at menopause and no study has systematically tracked changes
in hormones and ovarian function with age in a large group of women with
intellectual disabilities. Thus, there is very little information on how
decreases in hormones after menopause may affect health and cognitive ability.
Studies of menopause have found that the median age at menopause was 3
to 5 years earlier in women with intellectual disability compared with
women in the general population. Women with Down syndrome and women with
Fragile X appear to have especially early onset of menopause.
6.1.7 Age-Related Health Problems
6.1.7.1 Osteoporosis. Osteoporosis is
considered to be characteristic of disorders that increase after menopause
and are related to estrogen loss. In addition, long-term use of anti-convulsants
is a risk factor for osteoporosis. In women with osteoporosis1 bone
mass slowly declines over the years to produce thinner and more porous
bones, which are weaker than normal bones. Post-menopausal bone loss is
associated with wrist fractures in about 15% of women and with spine fractures
in 20-40%. The most serious complication of osteopenia is hip fracture,
which occurs in 15% of older fair-skinned women and causes high rates of
morbidity and mortality. Clinical trials of estrogen and bone density have
consistently shown that estrogen prevents or delays bone loss when taken
within 5 years of surgical or natural menopause. Osteoporosis and an increased
risk for fractures was also found in younger women with intellectual disabilities
who had either hypogonadism, a small body size, or Down syndrome.
6.1.7.2 Breast Cancer. Risks for
breast cancer and cervical cancer also increase with age. Whether or not
women with intellectual disabilities have the same risk for these cancers
as women in the general population is still being debated, and further
research is needed to address this question. Women who have never been
pregnant - including many women with intellectual disabilities - may be
at higher risk and thus screening is especially important (M. Vink: personal
communication). But screening for these cancers may present special problems.
Current guidelines for screening for breast cancer recommend regular mammography
in women over 50 years of age (every I to 2 years). Problems for effective
participation in screening programs among women with intellectual disability
include difficulties in understanding and co-operating with the procedures,
problems of transportation to screening sites and, often, musculoskeletal
problems which make accommodation to the mammography machines an uncomfortable
and fearful experience. Most physicians experienced with mammography in
women with intellectual disability emphasize that health and nursing personnel
need to take sufficient time for women to familiarize themselves with the
machines and with the procedures to participate effectively. However, economic
pressures under extant proprietary or national health care systems in certain
nations may limit the willingness of physicians and their staff to provide
the necessary time and training to achieve successful levels of co-operation.
In the Netherlands, all women within a municipal administration system
are invited by postal code and birth date for breast cancer screening,
but illiteracy and poor literacy may limit participation. ln other countries,
the screening program does not include women who are not able to pay for
the procedures. In general, women with intellectual disabilities receive
fewer opportunities for screening for breast cancer than do women in the
general population. This may be particularly insidious in nations that
have no systematic screening procedures as women with intellectual disabilities
may be at particular risk since most may have limited access to available
health practitioners, and if access is not available, such screenings may
never be carried out
6.1.7.3 Cervical cancer. Guidelines
for screening for cervical cancer recommend screening by cervical smear
testing once every 2 to 5 years for women between the ages of 30 and 60
years. Sexual activity is associated with increased risk for cervical cancer,
so that women with intellectual disability who are have no experience of
sexual activity may possibly be excluded from screening programs. Poor
receptive and expressive language, discomfort and fear may create difficulties
in achieving co-operation in pelvic examination and obtaining cervical
smears in some women with intellectual disabilities. In some nations, lack
of available female physicians may further limit such examinations as societal
mores proscribe such contact by male physicians. Further, given sensitivities
to genital contact, and lack of familiarities of such procedures by women
with disabilities under these circumstances, no such screenings may ever
be undertaken in certain nations, further increasing risk.
6.1.7.4 Heart disease. The frequency
of heart disease is lower in menstruating women than in men of the same
age, but after menopause the frequency of heart disease is the same in
women as in men. Many studies have shown that the risk of a coronary event
is reduced by about 50% in postmenopausal women using oral estrogen compared
with women not taking oral estrogens. It is thought that this decrease
in coronary heart disease is related to the ability of estrogen to prevent
coronary artery disease and prevent the build-up of some types of cholesterol
in the bloodstream. Other age-related conditions that appear to occur with
increased frequency in women with intellectual disability are thyroid problems,
sensory impairment, heart rhythm disorders and musculoskeletal disorders.
6.1.7.5 Alzheimer's disease. Ovarian
hormones such as estrogen are also important to maintain brain function
in regions of the brain affected by Alzheimer's disease. Some scientists
have suggested that the loss of estrogen after menopause may increase risk
for the cognitive declines associated with Alzheimer's disease, although
this is still controversial. Several studies have found that women who
took estrogen after menopause had a decreased risk and later age at onset
of Alzheimer's disease. Epidemiological studies on the sex-linked prevalence
of Alzheimer's disease are equivocal, with some showing a higher rate among
women with Down syndrome, and others showing no discernible patterns between
men and women with intellectual disabilities of other etiologies.
6.1.7.6 Menopause. Women with intellectual
disabilities may have an earlier age of menopause which may place them
at increased risk for these estrogen-related disorders. In addition, the
frequency of estrogen or hormone replacement therapy is much lower in women
with intellectual disabilities than in women in the general population,
so that they do not receive the same degree of preventive and therapeutic
intervention as women in the general population.
6.1.7.7 Psychiatric Illnesses. Older
women in general are reported to often experience more instances of depression
and other life stressor-related reactive behaviors indicative of psychiatric
difficulties. As reported by the WHO/IASSID's report on Biobehavioural
Issues, this is often the case among older women with intellectual
disabilities as well. This paper should be accessed for a more detailed
explanation of this problem area.
6.2 Health Promotion
6.2.1 Health care paradigms are expanding
from an historical emphasis on treatment of disease conditions to a more
expansive focus on health promotion through healthy lifestyles, preventive
health care, and positive environmental conditions. There is a growing
body of research associating successful aging and disease prevention with
health behaviors and environmental conditions. Among women with disabilities
health promoting activities and settings can lead to enhanced useful functioning,
prevention of secondary disabling conditions, and an increased quality
of life. Researchers have only recently begun to explore the conditions
promoting optimum health among older persons with intellectual disabilities,
and even less among women with intellectual disabilities. In a national
survey conducted in the United States, the most common chronic health problems
noted for older adults with intellectual disabilities were high blood pressure,
osteoarthritis, and heart disease. Women with intellectual disabilities
who survive into old age are most likely to die of heart disease. Older
women with intellectual disabilities, particularly women who have a lifelong
history of anti-epileptic medicine may be more susceptible to osteoporosis
than the general population.
6.2.2 Proper nutrition, exercise, and
access to preventive health care can increase health and longevity. Yet
women with intellectual disabilities receive less preventive health care
than women generally and have highly sedentary lifestyles. Among adults
with intellectual disabilities obesity and cholesterol levels are higher
than for the general population. This is particularly true for women and
for adults living in independently. Among adults with Down syndrome, a
United States study reported that nearly half of the women and nearly one
third of the men had morbid obesity. A study of women with intellectual
disabilities living in residential facilities found that women were more
likely than men to have malnutrition or obesity. Data from the United States
tells us that older adults with intellectual disabilities living at home
exercise less frequently than other older adults. In addition to the negative
effects on health, the high levels of obesity and the low levels of physical
activity reported among adults with intellectual disabilities can create
barriers to successful employment, participation in leisure activities,
and performance of daily living activities. Other health behaviors, in
addition to diet and exercise, which have been shown to affect health among
the general elderly population, such as smoking, alcohol use,
medication management, and stress management, have been rarely studied
among women with intellectual disabilities.
6.2.3 Access to preventive health care
varies widely by country. Data from the United States indicates very low
levels of health screenings for older women with intellectual disabilities,
including mammograms, breast examinations, and pap smears, particularly
for women living in the community. Reasons for lack of preventive health
care include lack of private insurance, attitudinal barriers of health
care professionals, insufficient health education, and fear of examinations,
and communication difficulties experienced by women with intellectual disabilities.
6.2.4 To promote healthy behaviors and
preventive health care among older women with intellectual disabilities,
health education is needed for the women with intellectual disabilities
and for health professionals. Women with intellectual disabilities may
lack basic knowledge about their bodies and about health and aging. They
may be unaware of how their current lifestyles and behaviors can have an
effect on their overall health and well-being. Also, health professional
often do not communicate effective strategies for health promotion to women
with intellectual disabilities or their carers.
6.3 The Context Of Healthy Ageing
6.3.1 The socio-economic context - for
example, level of income, employment status and family circumstances -
and also the cultural environment in which individuals develop and age
influence health outcomes. Differences in life expectancy, income and access
to health care are conspicuous when outcomes for women in developing countries
are compared to those in the less developed countries - where the majority
of all persons with intellectual and developmental disabilities live. While
these topics have been explored among the general population to some extent,
little empirical research is available concerning women with intellectual
disabilities.
6.3.2 Very few women with intellectual
disabilities marry, even in the more developed countries, and few will
have the opportunity to experience gender roles which are typical in their
cultural settings. Few bear children. As a consequence, in later life they
lack key sources of informal support and care. The importance of the role
played by brothers and sisters in the development and well-being of adults
with intellectual disabilities across the lifespan has been recognized.
Yet the extent and function of such relationships have only recently been
studied empirically. Women with intellectual disabilities are also less
likely to become primary family carers, although increasingly those who
become middle-aged may be called on to care for an elderly or frail parent
who has heretofore provided care for them. Some questions remain: for example,
can respite care - an important element in formal care - help to maintain
or promote health and well-being among women with intellectual disability,
either directly or through its impact on family members?
6.3.4 While it is recognized that friendships
and social networks contribute to the health and well-being of women in
the general population, the specific elements of this contribution in the
lives of women with intellectual disability is less well understood. Adults
with intellectual disability tend to name significantly fewer individuals
and to have more dense social networks than other adults. Those who receive
formal services describe social networks filled largely by members of staff.
In addition, their networks include more family members than friends -
although men with intellectual disabilities are likely to include fewer
friends. Adults also tend to name family friends as their own. While empirical
evidence suggests that adopting multiple social roles may help to protect
women from threats to their well-being, women with intellectual disability
are much less likely to have such varied life opportunities.
6.3.5 The favorable impact of employment
on the well-being of employees in terms of income, personal satisfaction,
esteem, friendships and health has been well-documented in the more developed
countries. Less is known about the impact of employment status on the health
and well-being of adults with intellectual disabilities, although this
has been recognized as an important area for continued research.
6.3.6. The day-to-day experiences of
women in the workplace, as well as the expectations of supervisors, employers
and co-workers have been explored in a few recent studies. It has been
reported in Australian and North American studies that women with intellectual
disabilities in community employment are more lonely at work than men.
Initial findings of a longitudinal study being carried out in France (GRADIOM)
suggests that staff members and medical personnel in sheltered workshops
appraise women with intellectual and developmental disabilities as being
old some years in advance of the men of similar age with whom they work.
Whether this perception is due to cultural factors or to differential working
conditions or access to health care has not yet been determined. In general,
the uptake of employment, patterns of occupation, and benefits of employment
among women with intellectual disabilities across the lifespan have not
been investigated systematically and across cultures.
6.3.7 It is not known, for example, whether
in developing countries women with intellectual disability share in the
"feminization of the work force" trend which has been apparent in more
industrialized countries, notably among women with disabilities. Some findings
suggest that patterns of employment and employment outcomes differ for
women with intellectual disability. Less is known about the employment
experiences of women in developing countries, where a priority is to acquire
skills so as to contribute to family - and thus, their own - livelihood.
6.3.8. While employment may bring benefits
in terms of income, self-esteem and community participation, it may not
be without hazard. Because of the generally unskilled nature of the occupations
assigned to women with disabilities who may be employed, they are more
likely to be exposed to occupational hazards and toxic substances. Many
occupational diseases can be prevented through improvements to the work
environment and reduction of harmful exposure to toxins and other substances.
For example, silicosis is common in many dust-generating activities such
as ceramics production, prompting a joint lL-WHO initiative planned to
eliminate this disease. The long-term impact of these occupational hazards
on the health of women with intellectual or other developmental disabilities
who are in the labor force has yet to be investigated.
6.3.9 Although, it is likely that women
with intellectual disabilities who have achieved employment in the regular
labor force subsequently take a more active part in society, outcomes for
them in terms of greater social inclusion - a core social policy within
the European Community, for example - have yet to be determined. Accordingly,
there is little evidence to indicate how their health and well-being may
be promoted through wider participation in society.
7.0 Qualitative Information
This section presents a summary of key
issues identified during a range of focus group data collections, as well
as at a variety of meetings or consultations carried out with women with
intellectual disabilities, their family members, advocates and friends.
While the procedures varied slightly, some commonalities emerged when data
from all the groups were explored. The issues which arose in several different
sites have been blended here, partly to protect the individuals who offered
their assistance so readily. The findings appear under five headings selected
because they reflect the emergent concerns of the women informants: ageing
and disability (7.1), treatment (7.2), training for professional workers
(7.3), health promotion (7.4), and personal and practical supports (7.5).
7.1 Ageing and Disability
7.1.1. Determining ones age is often
difficult for persons with limited experiences or with intellectual disabilities.
For example, only half of the participants in one group could tell their
current age. Thus, self-defining aging over the life course may be a difficult
skill. Life course changes, such as acknowledgment of the basic physical
changes that take place over time, from baby to girl to teenager to woman,
such as the body growing bigger as a person gets older and girls getting
periods as a teenager; concern over changes in family relations and issues
related to aging parents as they get older - sometimes mostly sad experiences
(e.g., grief over death of a loved one and negative changes in relationships
with family members) can be difficult without outside validation. To some
persons with intellectual disabilities, "getting old" evokes notions of
becoming sick and dying. However, some adults do recognize that not to
do so depends on a person's health status and how often she visits the
doctor. In many of the focus groups, there was generally a lack of appreciation
of anything that would be considered "good" about growing older.
7.1.2 A related perception emerged in
one group, which found that often there is a lack of self-identification
among older women as being someone with a disability, or a negative perception
of people with disabilities. The desire to bear a child, but a child without
any disabilities, was apparent for some women. Another group found that
many older women with intellectual disabilities have previously been institutionalized
for years. They have grown up with poor diets and a lack of exercise, thus
increasing their risk of osteoporosis.
7.2 Medical Procedures and Treatment
7.2.1 Giving consent to undergo medical
procedures or treatment raises complex issues which differ from country
to country. Consent issues for procedures such as a breast biopsy are a
major problem for women who may have difficulty understanding the procedures
themselves or the relative merits and disadvantages of a particular form
of treatment. Mental health issues in relation to sexual abuse of women
are still untreated or under-rated. Alcohol dependency, drug and disorders
such as depression among women living alone or with their families tend
to be treated as behavioral disorders. As a result, appropriate treatment
is not provided. There still is a tendency by doctors to apply a "band-aid"
approach - such as prescribing a calming medication - rather than address
the underlying problems. Equipment for mammograms and other tests that
are recommended for the general population are often not suitable for women
with physical disabilities such as spina bifida or for women with disabilities
who are very short in stature, who have contractions or similar conditions.
Even the examination tables are not accessible for many women with physical
disabilities or who are afraid of the examination process.
7.2.2 Dental care for women with disabilities
was reported as an issue by a number of groups. Few dentist offices are
accessible and the equipment is rarely suitably adapted for adults with
physical disabilities. There is also still a fear of the dental process
among many women. Care personnel report an increase in swallowing disorders,
seizures, asthma, reflux, and functioning loss in older women. These phenomena
have only been observed and there is a need for studies to determine whether
these observations accurately reflect prevalent health conditions. Little
is known about osteoporosis in women with disabilities and little is known
whether certain medications such as steroids and epilepsy medications can
increase the risk of osteoporosis. Focus groups report a need for training
on sexually transmitted disease, especially AIDS.
7.2.3 Complex issues such as estrogen
replacement are still controversial for the general population of women:
it is even more difficult to determine appropriate treatment recommendations
for individual women. There is still a tendency to perform possibly unneeded
hysterectomies, sterilizations, and procedures such as dilatation and curettage
when there is no one to advocate or advise the woman with a disability.
Much of the research available has been based on populations of men rather
than women - for example, studies on heart disease. It is difficult to
monitor and advise women with disabilities or to make decisions about health
when the information is not available. Studies are few that involve women
themselves and the information from those that are conducted needs to be
made available widely for women with disabilities.
7.2.4 Decisions related to pap smear
tests include an assumption that women who appear to have been sexually
inactive have no need for tests. And yet, who is to decide whether the
woman has ever been active or may have been sexually abused in the past?
The need for information related to HRT - hormone replacement therapy -
including risk factors, cost of ongoing treatment, types of HRT available
(e.g., tablets, patches, implants). Women who have been sterilized at an
early age (parents have been able to give consent for minors under 18 years
of age to have a hysterectomy) may have different needs in older age than
women who may choose to be sterilized at a later age.
7.2. 5 It is helpful if older women with
intellectual disabilities can recognize the differences between women and
men in terms of different body parts (including genitalia); that menstrual
periods are something only women have; and that menopause is a time when
a woman's period stops. Often, older women do not understand why the menopause
takes place. Others may lack a way to describe common physical changes
that women experience related to menopause1 such as hot flashes
and irritability, or to understand what is involved taking medication such
as HRT. Generally, women with intellectual disabilities experience an overall
discomfort about, and reluctance to discuss, traditionally taboo subjects,
such as sexuality, and in general talking about their own bodies.
7.3 Training for Professionals
7.3.1 Physicians and their staff do not
often understand disabilities or have any education on disabling conditions.
Community health professionals may not have experience in health care and
concerns related to people with developmental disabilities in general,
and older women in particular. The offices where medical care is provided
are often rushed with little time spent explaining the service system,
health issues and other matters. Many women in the focus groups reported
that there is not enough time in the office preparing women with disabilities
for examinations and helping each woman understand health related issues.
Even family members are rushed through visits to physicians.
7.3.2 Training for health professionals,
staff and families on how to better communicate health issues to women
with intellectual disabilities was urged by a number of groups. This was
defined further as training for health professionals that will sensitize
them to the concerns expressed by many of the women with intellectual disabilities
(i.e., painful or uncomfortable exams and procedures) and how to facilitate
more positive health experiences for them.
7.3.3 There are often many unanswered
questions regarding the purpose of having medical examinations, such as
ophthalmic, dental and pelvic exams, and mammograms. Many women reported
feeling discomfort or pain during mammograms or pelvic exams. They reported
being accompanied to physician visits by care personnel, but often the
care personnel were not helpful in explaining the physical procedures.
7.3.4 Women in the focus groups noted
that health examinations can be made more pleasant, by doing such things
as controlling their own behavior (lying still, holding breath), but many
were less certain of how the physician or other medical personnel might
help. There were mixed reactions on how physicians treated women: some
reported that physicians and other health professionals were nice to them,
while others disagreed.
7.4 Health Promotion
7.4.1 Focus groups often emphasized the
need for prevention of onset or worsening of a disease or condition among
women with intellectual disabilities. Proactive lifestyle changes can provide
health benefits for women with intellectual disabilities who have not led
healthy lives, even at a later age. The systematic use of periodic screening
checklists for women has been found to be of benefit to general practitioners.
7.4.2 When health services are available,
women often report that they experience general confusion over what procedures
physicians would do during both regular and specialized exams, and what
was the purpose the different types of examinations. In some nations, aid
in preparing for medical examinations is provided by care personnel. In
the United States, for example, such personnel -often nurses - help to
prepare women for medical examinations and other treatments This is often
the case if the woman is enrolled in a residential or day services program.
However, it has been noted that if the woman is living on her
own in the community, there is no one who takes responsibility for this
training or advocacy.
7.4.3 Wellness as a lifestyle was often
discussed. Participation in a exercise regime and recognition of the importance
of regular exercise for staying healthy as they get older was an apparent
need. Many women knew that is important to eat the right foods in order
to stay healthy, but were not aware that many of the foods that they currently
eat would not fit the model of a "healthy" diet. Efforts to encourage women
to understand that smoking can cause cancer and that it is not a healthy
behavior were recommended. The fact that older women (and men) with intellectual
disabilities are less likely to engage in active sports was noted .
7.4.4 Education for women with intellectual
disabilities was recommended, including topics concerning women's health
issues and general age-related changes, as well as about specific health
issues related to their disability and/or to aging. Many of the women reported
watching and/or listening to television and radio. Given this, it was agreed
that appropriate health information could be developed utilizing a variety
of materials, including audio-visual and related computer-based multimedia
- for example, WEB-TV.
7.4.5 Access to health promotion may
be constrained if women do not have suitable support. Generally, women
who are not affiliated with (service) agencies do not have anyone to help
them negotiate the complex health system and payment processes.
7.5 Personal and Practical Supports
7.5.1 Women capable of occupation or
employment should be assisted to achieve or maintain optimal functional
and
employment capacity. With regard to employment and access to health
care, women with disabilities should be able to work without compromising
their entitlement to health services. To help in managing work assignments,
personal assistance services should be provided.
7.5.2 Medical services for women with
intellectual disabilities should be provided consistent with current standards
of practice and such medical services should be sufficient to achieve their
purpose. When income is used to determine eligibility or degree of medical
service receipt, medical services for which individuals may be eligible
should be provided at no expense or at minimum on a sliding fee scale.
Further, with regard to medical services, a patients' bill of rights which
addresses the needs of people with disabilities should be available. Person-centered,
holistic approaches to health care need to be adopted.
7.5.3 Supports for women with intellectual
disabilities are important so that they might be encouraged to explore
perceptions of themselves as women and their personal issues related to
sexuality in a way that is respectful and breaks the apparent "taboo" surrounding
these discussions. They may gain support, further, by learning ways to
communicate their concerns, including an understanding that they have the
right to express feelings of discomfort and/or to ask questions of health
professionals. Finally, women with intellectual disabilities should be
helped to understand more fully and develop more positive perceptions about
being a women, having a disability, and getting older.
7.5.4 Although some areas on the world
are comfortable exploring the myriad of women's issues, others are not
There are many important matters related to women's health care that need
to be discussed. One is that access to health care is often arbitrary.
Even when it is allocated, the requirements of special groups of women
with intellectual disabilities may be poorly understood, placing them at
a disadvantage. Women with multiple disabilities may have even less access
to health care than their peers with minimal disabilities, especially to
reproductive health care. Professionals may have had little contact with
women who have profound disabilities and little sensitivity to their needs
throughout the lifespan and those of their family carers. Often, women
with physical or multiple disabilities and their advocates spoke of their
distress when they encountered various medical investigations and procedures,
and the resulting distress which could prevent them from receiving appropriate
treatment.
7.5.5. Ethical issues related to informed
consent to medical treatment are far from uniform. Both good and poor practices
may be found in all regions. Advances in professional training and adequate
financial resources do not guarantee good practice. Too often, prevalent
is the belief that women of reproductive age should be sterilized routinely
in order to prevent transmission of conditions giving rise to disabilities.
8.0 Policy and Service Recommendations
A number of recommendations related to
women's health policy and practices in health and health-related services
are proffered:
8.1. Sterilization
In some nations, sterilization is used
to control a woman's sexuality or for the benefit of carers and not with
regard to the woman's preferences or health. Each nation should adopt guidelines
regarding the sterilization for women with intellectual disabilities, especially
addressing the issue of informed consent to this procedure. Sterilization
should never be applied as a broad social policy and without the woman's
consent.
8.2 Evaluating Health Status
Service providers should determine how
the health status and health care practices of parents and carers may be
associated with those of women with intellectual disabilities so as to
evaluate their health needs and plan appropriate interventions within a
family context.
8.3 Adopting Health Promotion Strategies
Health promotion strategies which recognize
the cultural and social context and which are sensitive to the needs of
women with an intellectual disability throughout their lives should be
developed in consultation with them. At the same time, a greater understanding
of age-related changes should be advanced.
8.4 Training Health Providers
Health care professionals should receive
training in order to deal sensitively and effectively with women's health
needs. Training should be targeted according to local conditions. In some
countries, primary health care workers should be trained to offer essential
information and guidance if physicians or other professionals working in
health care systems are unable to do so.
8.5 Inclusive Communities
Supports for living and working in the
community should take account of the distinctive characteristics and needs
of women with intellectual disability at different stages in their lifespan.
9.0 Research Priorities
Several important areas of research in
the areas of sexual and reproductive health are suggested. In many instances,
these inquiries should be undertaken within the context of large scale
multinational studies.
9.1 Menstruation
This topic has received scant research
attention and many questions remain unanswered, including: How many women
with intellectual disabilities have regular/irregular and fertile/infertile
menstrual cycles? How do risk factors such as having Down syndrome, short
stature and hypogonadism - and maybe other risk factors- influence this?
To what extent do anticonvulsants and neuroleptics influence these?
9.2 Menopause
Life stage related changes affect women
with intellectual disabilities in the same manner as they do other women.
Yet, little research has been directed toward these critical transition
stages. Many questions remain, such as: How many women with intellectual
disabilities have an earlier onset of menopause? What are risk factors
for that?
9.3 Sexually Transmitted Diseases
STDs are a public health problem at any
age. Women with intellectual disabilities are no less vulnerable to them.
Yet, research has been negligent in addressing the particular issues related
to STDs and women with intellectual disabilities. It is necessary to know
more, for example: What are effective strategies for educating women with
intellectual disabilities on sexually transmitted diseases?
9.4 Reproductive Health
The area of reproductive health, particular
in regard to what practices may affect women as they age is virtually untouched
in the literature on women and intellectual disabilities. An important
question is, Are women with intellectual disabilities more or less at risk
from certain forms of cancer? More information in needed, such as: How
can women with intellectual disabilities be guided on making their own
choices in having children and/ or using contraceptives? What are the rights
and responsibilities of guardians in supporting the choice process?
9.5 Training of Medical Practitioners
In a number of countries, medical personnel
are trained to become specialists in the area of intellectual disabilities,
yet practically none have emerged as leaders in the area with regard to
women's health. The dearth of trained practitioners who can serve as leaders
in women's health is an impediment to realizing many health targets. Universities,
medical training institutions and other settings should expand their focus
in this area, particularly expanding their research efforts. There is a
need to know more about how to more effectively deliver services to women
with intellectual disabilities. For example: What training packages are
effective in educating physicians, and especially gynaecologists on the
special needs of women with intellectual disabilities?
9.6 Prevention
What is an appropriate strategy for making
PAP smears in women with intellectual disabilities? Are there groups of
women with intellectual disabilities who need not to be invited for this
preventive measurement? What is known about the prevalence or course of
cervical cancer in this population?
9.7 Disease Impact
Research must help to determine the incidence
and impact of osteoporosis and osteoarthritis among ageing women with disabilities,
notably in terms of their social inclusion and general well-being.
9.8 Lifespan Effects
Long-term effects on health should be
investigated among aging women. How diet and nutrition of women with disabilities
relate to the incidence of heart disease, and the interface of longitudinal
drug therapy with lifelong health are two such areas.
9.8 General Life Status
Overall, to date there have been few
empirical studies investigating the impact of their employment status or
levels of social inclusion on the health and well-being of women with intellectual
disability at different stages in the lifespan, and across different social
and cultural settings. Further, no research has been conducted on how to
integrate women's health issues into the medical practice of nations where
women have a devalued status. This is an important, if often complex, area
for continued research.
9.9 Socio-Economic Status and Health
Women with an intellectual disability
are generally of low socio-economic status. Research should be undertaken
to determine the special needs of such women that need to be met in order
for them to achieve an equivalent level of physical and subjective well-being
to non-disabled women and men living in similar circumstances.
10.0 Summary
Promoting women1s health across
the lifespan may be seen as part of global strategy. Three major themes
arise in this report.
First, our understanding of the distinctive
needs, vulnerabilities and sources of well-being for women with intellectual
disabilities must be addressed vigorously. There are compelling research
priorities in the areas of reproductive and sexual health, and in health
promotion practices, if health strategies founded on scientific evidence
are to be pursued. Research questions of great importance to the health
and ageing process among women generally have not been investigated among
women with intellectual disabilities.
Second, a notable feature of WHO policy
is the direct involvement of women themselves in informing, shaping and
evaluating health interventions. This report offers examples of how women
with disabilities may be directly involved as full partners in the formation
of health strategies and interventions, and thus as contributors to their
own well-being as they age.
Third, it is evident that health resources
are finite. The distinctive health care needs and also the relatively low
socio-economic status of women with intellectual disabilities must be understood
in order to inform the allocation, or the re-allocation, of scarce resources
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