Understanding the health of people with disabilities

This section provides a general overview of the health status of people with disabilities by looking at the different types of health conditions they may experience and several factors that may contribute to the health disparities for this population (see Box 3.1). Increasing evidence suggests that, as a group, people with disabilities experience poorer levels of health than the general population (18). They are often described as having a narrower or thinner margin of health (9, 17).

Box 3.1

Terminology. A primary health condition is the possible starting point for impairment, an activity limitation, or participation restriction (9). Examples of primary health conditions include depression, arthritis, chronic obstructive pulmonary disease, (more...)

Higher risk of premature death

Mortality rates for people with disabilities vary depending on the health condition. People with schizophrenia and depression have an increased risk of premature death (2.6 and 1.7 times greater, respectively) (21). An investigation in the United Kingdom of Great Britain and Northern Ireland regarding health inequalities among people with learning impairments and people with mental health disorders found that they had a lower life expectancy (see Box 3.2) (15).

Box 3.2

Health inequalities experienced by people with disabilities. The Disability Rights Commission in the United Kingdom formally investigated premature deaths among people with learning disabilities or mental health problems and local reports of unequal access (more...)

In some instances mortality rates for people with disabilities have fallen in developed countries. For example, adults with cerebral palsy have lifespans close to those of people with no disability (55). Over the past few decades people with a spinal cord injury in the United Kingdom and the United States have improved survival rates during the first one to two years following injury (56, 57), but beyond this period there is no evidence of improvement (57). The data are limited on mortality rates for people with disabilities in low-income countries. A study in Bangladesh suggests that people with cerebral palsy may have higher rates of premature death (58).

Needs and unmet needs

Disabled respondents from 51 countries reported seeking more inpatient and outpatient care than people without disabilities in the WHO 2002–2004 World Health Survey (see Table 3.1). Women seek care more often than men, and so do respondents with disabilities in high-income countries compared with respondents in low-income countries across gender and age groups. The proportion of respondents seeking care in high-income countries increases with age; the results varied for low-income countries.

Table 3.1

Individual's seeking health care and not receiving needed care.

Disabled respondents reported not receiving care more than people without disabilities, across both sex and age grouping. Respondents with disabilities in low-income countries show higher rates of not receiving care (6.1–6.6) than respondents in high-income countries (3.3–4.6). Age-standardized analysis across all countries suggests that older respondents with disabilities have less unmet care needs than younger (≤ 59) respondents.

Need and unmet needs exist across the spectrum of health services – promotion, prevention, and treatment.

Health promotion and prevention

Misconceptions about the health of people with disabilities have led to assumptions that people with disabilities do not require access to health promotion and disease prevention (60).

Evidence shows that health promotion interventions such as physical activities are beneficial for people with disabilities (61–65). But health promotion activities seldom target people with disabilities, and many experience multiple barriers to participation. For example, limited access to health promotion has been documented for people with multiple sclerosis (66), stroke (67), poliomyelitis (67), intellectual impairment (15), and mental health problems (15).

While some research indicates minimal differences in immunization rates (68–70), people with disabilities are generally less likely to receive screening and preventive services. Several studies found that women with disabilities receive less screening for breast and cervical cancer compared with women without disabilities (15, 68, 69, 71–75), and men with disabilities are less likely to receive screening for prostate cancer (68, 76). A United Kingdom investigation found that people with intellectual impairment and diabetes are less likely than others with just diabetes to have their weight checked, and people with schizophrenia and a high risk of coronary heart disease are less likely to receive cholesterol screening (15).

Sexual and reproductive health services

Sexual and reproductive health services include family planning, maternal health care, preventing and managing gender-based violence, and preventing and treating sexually transmitted infections including HIV/AIDS. While little information is available, it is widely thought that people with disabilities have significant unmet needs (77). Adolescents and adults with disabilities are more likely to be excluded from sex education programmes (78, 79). A national study in the United States showed that women with functional limitations were less likely to be asked about contraceptive use during visits to general practitioners (71).

Dental care

The oral health of many people with disabilities is poor, and access to dental care limited (80–86). An Australian study investigating dental treatment of children with disabilities found that the simple treatment needs of 41% of the sample were not met (81). A study of the use of oral health care services by children in Lagos, Nigeria, found that children with disabilities and children from lower socioeconomic status did not adequately use dental facilities (84).

Mental health services

Many people with mental health conditions do not receive mental health care despite the fact that effective interventions exist, including medication. A large multicountry survey supported by WHO showed that between 35% and 50% of people with serious mental disorders in developed countries, and between 76% and 85% in developing countries, received no treatment in the year before the study (87). A meta-analysis of 37 epidemiological studies across 32 developed and developing countries uncovered a median treatment gap between 32% and 78% for a range of mental health conditions including schizophrenia, mood disorders, anxiety disorders, and alcohol abuse or dependence (88).

Addressing barriers to health care

People with disabilities encounter a range of barriers when they attempt to access health care services (7, 89, 90). Analysis of the World Health Survey data showed a significant difference between men and women with disabilities and people without disabilities in terms of the attitudinal, physical, and system level barriers faced in accessing care (see Table 3.2).

Table 3.2

Reasons for lack of care.

Research in Uttar Pradesh and Tamil Nadu states of India found that cost (70.5%), lack of services in the area (52.3%), and transportation (20.5%) were the top three barriers to using health facilities (91). These findings are supported by studies in Southern Africa that identified cost, distance, and lack of transport as reasons for not using services, along with services no longer being helpful or the individual not being satisfied by the services (92–95).

Governments can improve health outcomes for people with disabilities by improving access to quality, affordable health care services, which make the best use of available resources. Usually several factors interact to inhibit access to health care (96), so reforms in all the interacting components of the health care system are required:

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reforming policy and legislation

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addressing barriers to financing and affordability

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addressing barriers to service delivery

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addressing human resource barriers

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filling gaps in data and research (97).

Addressing barriers to financing and affordability

A review of the 2002–2004 World Health Survey reveals that affordability was the primary reason why people with disabilities, across gender and age groups, did not receive needed health care in low-income countries. For 51 countries 32–33% of nondisabled men and women cannot afford health care, compared with 51–53% of people with disabilities (see Table 3.2). Transport costs also rank high as a barrier to health care access in low-income and high-income countries, and across gender and age groups.

Health services are funded through a variety of sources including government budgets, social insurance, private health insurance, external donor funding, and private sources including nongovernmental arrangements and out-of-pocket expenses. The World Health Survey showed that the rate at which people with disabilities pay with current income, savings, or insurance is roughly the same as for people without disabilities, but paying with personal means varies between groups: paying with insurance is more common in high-income countries, while selling items and relying on friends and family is more common in low-income countries, and people with disabilities are more likely to sell items, borrow money, or rely on a family member (see Table 3.3).

Table 3.3

Overview of health expenditures, proportion of disabled and not disabled respondents.

Public health systems theoretically provide universal coverage, but this is rare (108, 109): no country has ensured that everybody has immediate access to all health care services (110). In the poorest countries only the most basic services may be available (110). Restrictions in public health sector expenditure are resulting in an inadequate supply of services and a significant increase in the proportion of out-of-pocket expenditure by households (109, 111). In many low-income countries less than 1% of health budgets are spent on mental health care, with countries relying on out-of-pocket payments as the primary financing mechanism (112). Some middle-income countries are moving towards private sector provision for treatments such as mental health services (113).

People with disabilities experience lower rates of employment, are more likely to be economically disadvantaged, and are therefore less likely to afford private health insurance (114). Employed people with disabilities may be excluded from private health insurance because of pre-existing conditions or be “underinsured” (114) because they have been denied coverage for a long period (11), or are excluded from claiming for treatment related to a pre-existing condition, or must pay higher premiums and out-of-pocket expenses. This has been a problem in the United States for example, but the new Affordable Care Act enacted in March 2010 will prohibit the denial of insurance to those with pre-existing conditions starting in 2014 (115).

Analysis from the 2002–2004 World Health Survey across 51 countries showed that men and women with disabilities, in high-income and low-income countries, had more difficulties than adults without disabilities in obtaining, from private health care organizations or the government, payment exemptions or the right to special rates for health care. Furthermore people with disabilities experienced more difficulties in finding out which benefits they were entitled to from health insurance and obtaining reimbursements from health insurance. This finding was most evident in the age group 18–49 with some variability in the older age groups across income settings (see Table 3.4).

Table 3.4

Difficulties in access to health care financing.

Social health insurance systems are generally characterized by mandatory payroll contributions from individuals and employers (109). These employer-based systems may be inaccessible for many adults with disabilities because they have lower employment rates than people without disabilities. Even employed people with disabilities may not be able to afford insurance premiums associated with employer-based health insurance plans (114), while disabled people working in the informal sector or for small businesses are unlikely to be offered insurance (114).

The World Health Survey found that disabled respondents in 31 low-income and low middle-income countries spend 15% of total household expenditure on out-of-pocket health care costs compared with 11% for nondisabled respondents. People with disabilities were also found to be more vulnerable to catastrophic health expenditure (see Table 3.5) across gender and age groups, and for both low-income and high-income countries as defined by the World Bank. For all countries, 28–29% of all people with disabilities suffer catastrophic expenditures compared with 17–18% of nondisabled people, but low-income countries show significantly higher rates than high-income countries across sex and age groups.

Table 3.5

Overview of catastrophic health expenditures, proportion of disabled and not disabled respondents.

Financing options

Health system financing options determine whether health services – a mix of promotion, prevention, treatment, and rehabilitation – are available and whether people are protected from financial risks associated with using them (110, 116). Contributions such as social insurance and copayment for health services must be affordable and fair, and take into account the individual's ability to pay. Full access will be achieved only when governments cover the cost of the available health services for disabled people who cannot afford to pay (110).

A range of health financing options can increase the availability of health care services to the general population, and improve access for individuals with disabilities. The World Health Report 2010 outlines an action agenda for paying for health that does not deter people from using services including (110):

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raise sufficient resources for health by increasing the efficiency of revenue collection, reprioritizing government spending, using innovative financing, and providing development assistance;

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remove financial risks and barriers to access;

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promote efficiency and eliminate waste.

While improving access to affordable, quality health care pertains to everyone, the evidence presented above suggests that people with disabilities have more health care needs and more unmet needs. This section therefore focuses specifically on financing strategies that may improve access to health services for persons with disabilities.

Provide affordable health insurance

Having insurance (public, private, or mixed) can increase disabled people's access to, and use of, health care services. Having insurance improves a variety of outcomes including an increase in the likelihood of receiving primary care, a decrease in unmet needs (including for speciality care), and a reduction in delays or in foregoing care (117–119). Insurance for a wide range of basic medical services can improve clinical outcomes (120), and can reduce the financial problems and the burden of out-of-pocket payments for families (118). Subsidizing health insurance can also extend coverage to persons with disabilities. In Taiwan, China the health insurance scheme pays for part of the insurance premium for people with intellectual disabilities according to their level of disability (121). In Colombia subsidized health insurance increased coverage for the poorest quintile of the population (122), which may benefit people with disabilities because they are disproportionately represented in the bottom quintile.

Target people with disabilities who have the greatest health care needs

Some governments have targeted funding to primary care doctors and organizations to support health care of people with the greatest need. Care Plus – a primary health care initiative in New Zealand – provides an additional approximately 10% capitation funding to primary health organizations to include services such as comprehensive assessments, individual care plan development, patient education, and regular follow-ups, as well as better-coordinated and lower cost services (123, 124). Medicare, a United States government social insurance scheme, provides additional payment to primary care physicians for physician-patient-family-nurse conferences to facilitate communication, support lifestyle changes, and improve treatment compliance (125). The programme improved functioning of elderly people with heart conditions and has the potential to lower total health care expenditures (125). Many governments also extend financial assistance to disabled people's organizations and nongovernmental organizations for health programmes targeting people with disabilities (91, 126, 127).

Link income support to use of health care

Reviews of health financing mechanisms for the poor in Latin America indicate that conditional cash transfers can increase the use of preventative health services and encourage informed and active health care consumers, where effective primary health care and a mechanism to disburse payments are in place (111, 128–131). Conditional cash transfers, targeted at those groups of people with disabilities who typically receive fewer preventative services, may increase access to these services (114).

Provide general income support

Unconditional cash transfers for people with disabilities recognize the additional barriers they face in accessing health care and rehabilitation, transport, education, and working, among other things. Many countries provide income support through these transfers to poor households, including poor households with a disabled member, and directly to individuals with disabilities. Some, such as Bangladesh, Brazil, India, and South Africa, have unconditional cash transfer programmes targeted at poor people and households with a disabled member. The programmes aim at increasing the disposable income of poor households, which they spend according to their priorities – for example by buying food, enrolling children in education, or paying for health care. No best practice formula is available to guide policy, but cash transfers can exist along with other social policies and social protection programmes.

Reduce or remove out-of-pocket payments to improve access

Reduction or elimination of out-of-pocket payments for fees – whether formal or informal – can increase poor people's use of health care services, and reduce financial hardship and catastrophic health expenditure (110, 111). This is particularly important for people with disabilities who spend more on health than people without disabilities (see Table 3.3). Removing fees does not guarantee access, however, as even “free” health services may not get used. People with mental health conditions, for example, might not access services because of barriers such as stigma, or people with mobility impairments may face physical barriers to health care access (72, 113).

Provide incentives for health providers to promote access

Some people with disabilities require prolonged care and accommodations requiring additional resources to ensure effective coordination (114). In the United States tax credits to small practices help make up for the cost of patient accommodations (132). In Wales new disability access criteria for primary care doctors create incentives for general medical practices to make services more accessible to disabled people (15).

Addressing barriers to service delivery

Ensuring the availability of services and disabled peoples' awareness of the services, including those in rural and remote communities, is essential to improving access (see Box 3.3). Where services do exist people with disabilities may encounter a range of physical, communication, information, and coordination barriers when they attempt to access health care services.

Box 3.3

Access to mental health services. The 2001 World Health Report called for adequate access to effective and humane treatment for people with mental health conditions (133). Access to appropriate care is problematic for many people with mental health conditions, (more...)

Physical barriers may be related to the architectural design of health facilities, or to medical equipment, or transportation (11, 69, 72, 96).

Barriers to facilities include inaccessible parking areas, uneven access to buildings, poor signage, narrow doorways, internal steps, and inadequate bathroom facilities. A study of 41 Brazilian cities examining the architectural barriers in basic health care units found that about 60% did not allow adequate access for people with functional difficulties (137). Similarly, a survey carried out in Essen, Germany found that 80% of orthopaedic surgeries and 90% of neurological surgeries did not meet access standards, which limited wheelchair users from accessing their doctor of choice (138).

Medical equipment is often not accessible for people with disabilities, particularly those with mobility impairments. In the World Health Survey men with disabilities report health service provider's equipment (including medication) to be inadequate across income settings (22.4% compared with 7.7% for men without disabilities); women with disabilities in high-income countries report similar difficulties (see Table 3.2). For example, many women with mobility impairments are unable to access breast and cervical cancer screening because examination tables are not height-adjustable and mammography equipment only accommodates women who are able to stand (11, 132).

People with disabilities frequently cite transport as a barrier to accessing health care, particularly when they are located at a distance from health care facilities (see Table 3.2) (91–95). Transport for people with disabilities is often limited, unaffordable, or inaccessible (139). The majority of disabled participants in a United States study said that transportation problems were a major barrier to accessing health care (89). A study in the Republic of Korea suggested that transportation barriers were a likely factor in keeping people with severe physical and communication impairments from participating in population screenings for chronic diseases (140).

Communication difficulties between people with disabilities and service providers are regularly cited as an area of concern (79, 141, 142). Difficulties can arise when people with disabilities attempt to make appointments with service providers, provide a medical history and description of their symptoms, or try to understand explanations about diagnosis and management of health conditions. Inaccurate case histories may be provided to health-care practitioners when information is supplied by caregivers, family members, or others (143).

Service providers may feel uncomfortable communicating with people with disabilities. For example, many health-care providers have not been trained to interact with people with serious mental illness, and feel uncomfortable or ineffective in communicating with them (144). An investigation into Deaf women's access to health care in the United States found that health-care workers often turn their heads down when talking, preventing deaf women from lip-reading (141).

Failure to communicate in appropriate formats can lead to problems with compliance and attendance (145). A survey commissioned by the Zimbabwe Parents of Handicapped Children's Association found that people with disabilities were excluded from general HIV/AIDS services because counselling and testing were not offered in sign language for people with hearing impairments, and education and communication materials were not offered in Braille for people with visual impairments (146).

Some people with disabilities may have multiple or complex health needs, including rehabilitation, which require input from different service providers. These needs may extend across services in different sectors such as the education and social sectors. People with disabilities who require multiple services often receive fragmented or duplicative services (147). They may also encounter transitional difficulties when care is transferred from one service provider to another (148), such as when transitioning from child to adult services (149– 151), and from adult services to elderly services (152, 153).

Lack of communication between service providers can hamper coordinated service delivery (154). Primary health-care professionals' referrals to specialists often lack sufficient information, for example. Conversely primary health-care professionals frequently receive inadequate consultation reports from specialists, and discharge summaries following hospital admission may never reach the primary care doctor (155).

Primary care consultations can take longer for people with disabilities than for people without disabilities (156). Adults with intellectual impairment often require extra time for examinations, screening, clinical procedures, and health promotion (99). Health-care practitioners are often not reimbursed for the additional consultation time they spend with people with disabilities (132, 156), and the disparities between actual cost and reimbursement can be a disincentive for service providers to provide comprehensive health care (156). Short consultations may leave little time for service providers to understand and address the sometimes complex health care needs of people with disabilities (154, 157).

Perceptions of health status may influence health behaviours, including attendance at health care services, and how health needs are communicated. A study on people with epilepsy in rural Ghana, for example, found that spiritual beliefs surrounding epilepsy influenced health and seeking of treatment (158). A study in rural areas of the Gambia reported that only 16% of 380 people with epilepsy knew that preventive treatment was possible; of the 48% of people with epilepsy who had never used treatment, 70% did not know that clinics offered treatment for seizures (158). People with intellectual impairment in minority ethnic communities have also been found to be less likely to use health care services (14, 159). An Australian study on women with mental health conditions and physical, sensory, and intellectual impairment found that self-perceptions regarding sexuality, painful past experiences associated with reproductive screening, and memories of themselves before disability were all barriers to seeking health care (72). In another example, people who experience disability as they age may “normalize” their symptoms as “just part of ageing” rather than seeking appropriate treatment (160).

Include people with disabilities in general health care services

All groups in society should have access to comprehensive, inclusive health care (122, 163). An international survey of health research priorities indicated that addressing the specific impairments of people with disabilities is secondary to integrating their health needs into primary health care systems (164). Primary care services are generally the most accessible, affordable, and acceptable for communities (161). For example, a systematic review of studies from six developing countries in Africa, Asia, and Latin America confirmed that local, affordable primary health care programmes were more effective than other programmes for people with mental health conditions (165).

Providers may have to cater to the range of needs stemming from hearing, vision, speech, mobility, and cognitive impairments to include people with disabilities in primary health care services. Table 3.6 lists examples of accommodations. While evidence on the efficacy of such accommodations is limited, they represent practical approaches, widely recommended throughout the literature and within the disability community.

Table 3.6

Examples of reasonable accommodations.

Within low-income and lower middle-income settings, community-based rehabilitation (CBR) programmes can promote and facilitate access to health care services for people with disabilities and their families. As outlined in the health component of the CBR guidelines (166), programmes can assist people with disabilities to overcome access barriers, train primary health care workers in disability awareness, and initiate referrals to health services.

Target interventions to complement inclusive health care

Targeted interventions can help reduce inequities in health and meet the specific needs of individuals with disabilities (4, 17). Groups that are difficult to reach through broad-based programmes – people with intellectual impairment, mental health conditions, or Deaf people, for example – may warrant targeted interventions. Targeted interventions may also be useful for people with disabilities with a higher risk of secondary conditions or co-morbidities, or where there are specific health needs requiring ongoing care (see Box 3.4).

Box 3.4

Preventing HIV/AIDS among young people with disabilities in Africa. In 1999 the international network Rehabilitation International began an HIV/AIDS project in Mozambique and the United Republic of Tanzania to promote the African Decade of Persons with (more...)

Health promotion efforts targeted at people with disabilities can have a substantial impact on improving lifestyle behaviours, increasing the quality of life, and reducing medical costs (18, 168). Several small health promotion programmes for weight loss and fitness developed specifically for people with intellectual impairment have demonstrated some success (169). An intervention in the United States for adults with Down syndrome included a 12-week fitness and health education programme, which led to significantly improved fitness, strength, and endurance, and slight but significant reductions in body weight (65).

Improve access to specialist health services

Primary care teams require support from specialized services, organizations, and institutions (170) to provide comprehensive health care to people with disabilities. A survey of general practitioners in the Netherlands found that while they agreed that people with intellectual impairment should receive services in primary care settings, they rated access to specialist support as “important to very important” for health issues such as behavioural and psychiatric problems and epilepsy (171). Comprehensive health reviews in primary care settings have also been recommended for people with intellectual impairment with specialist multidisciplinary backup where required (169).

Good practices in mental health highlight the importance of specialists (161). In Uganda mental health specialists travel to primary care clinics to provide supervision and support; in Brazil visiting mental health specialists see patients together with primary care practitioners; and in Australia general practitioners are able to contact psychogeriatric nurses, psychologists, or psychiatrists as required (161).

Dedicated community-based services meet specialist health needs in some countries. In the United Kingdom, learning disability teams are widely available for people with intellectual impairment. These teams provide specialist treatment where general services are unable to meet needs, support primary care services to identify and meet health needs, facilitate access to general services, and provide education and advice to individuals, families, and other professionals (172). Outreach teams in Brazil and India follow-up on patients with spinal cord injuries to address issues such as skin care, bowel and bladder management, joint and muscle problems, and pain management (173).

Provide people-centred health services

Many disabled people seek more collaborative relationships with primary care providers in managing primary, secondary, and co-morbid conditions (7). A comprehensive health assessment programme in Australia designed to enhance interactions between adults with intellectual impairment and caregivers showed that the assessment increased general practitioners' attention to the health needs of adults with intellectual impairment, and improved health promotion and disease prevention (174).

People-centred approaches should:

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Educate and support people with disabilities to manage their health. Self-management approaches have been effective in improving health outcomes and quality of life for a range of chronic conditions, and in some instances have lowered costs for the health care system (125, 175, 176). With appropriate training and support, and opportunities for collaborative decision-making, people with disabilities can actively improve their health (see Box 3.5). People with disabilities with more knowledge can communicate better, negotiate the health system more effectively, and are generally more satisfied with their care (179, 180).

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Provide time-limited, self-management courses, involving peer support to enable persons with disabilities to better manage their health (176). In Nicaragua, where the health system is overburdened with increasing patients with chronic disease, “chronic clubs” have been established in health centres to teach people with diabetes about risk factors, disease management, signs of complications, and healthy lifestyles (181). In Rwanda a study regarding the health promotion needs of individuals with lower limb amputation recommended workshops to enable people with disabilities to share experiences and motivate each other to improve health behaviours (37).

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Involve family members and caregivers in service delivery where appropriate. Family members and caregivers may have limited knowledge and skills. They may not understand the importance of a healthy lifestyle, or they may not be able to identify changes in a person with a disability that would be indicative of a health problem (182). Family members and caregivers can support the health-seeking behaviours of people with disabilities by identifying health needs, helping obtain health care, including scheduling appointments, accompanying individuals to their appointments, and communicating information and helping to promote and maintain healthy activities (14). One study in the United States suggested that spouses, partners and paid caregivers were more likely than other types of caregivers to ensure the participation of people with disabilities in preventive health care services (183).

Box 3.5

People with spinal cord injuries on the medical care team. In 2005 a multicountry initiative was launched to investigate how people with disabilities could play a greater role in the management of their own care. The “New Paradigm of Medical Care (more...)

Coordinate services

Care coordination promotes a collaborative, interdisciplinary team approach to health care service delivery, linking people with disabilities to appropriate services and resources, and ensuring a more efficient and equitable distribution of resources (147, 154, 184). While perhaps increasing service delivery costs in the short-term, coordination has the potential to improve quality, efficiency, and cost– effectiveness of health care service delivery in the longer term (184–188). Targeting those who can benefit will help improve outcomes and reduce unnecessary coordination costs (189). Studies have confirmed that integrated and coordinated approaches across service organizations – including those involved in housing and education – can reduce the use of hospitals and nursing homes for people with disabilities and improve their general health and participation in the community (190, 191).

Effective and efficient ways to coordinate the seamless transition of health care services for people with disabilities are still under development. But some general strategies thought to be effective include the following elements (148, 152, 192):

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Identify a care coordinator. A range of health personnel can assume the role of care coordinator. Primary care structures are probably the most efficient for coordinating care throughout the health care system (155, 185), and many people with disabilities see general practitioners as having the overall responsibility for their health care and being “gatekeepers” for the wide range of community-based services (193). Sometimes, dedicated care coordination services and health facilitators can assist people to access primary health care services (120), as in the United Kingdom where clinical nurse specialists coordinate health care for people with intellectual impairment (169).

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Develop an individual care plan. A customized care plan is important to bridge current and past care and for arranging future needs. A plan should be flexible enough to accommodate changes in people's needs and circumstances (194). Enhanced Primary Care in Australia encourages general practitioners to carry out comprehensive health assessments, multidisciplinary care plans, and case conferences with older people, people with chronic illness, and people with intellectual impairment (169).

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Provide appropriate referral and effective information transfer to other services. Timely referral can facilitate access and decrease stress, frustration, and the development of secondary conditions (154, 195, 196). Good communication between service providers is critical (197). Electronic records or client passbooks – which include information on a person's abilities, challenges, and methods of learning or communicating – can support transition between child and adult services and between multiple health care practitioners (154). Inventories of relevant services and community resources also may be useful.

Use information and communication technologies

Information and communication technologies can increase the capacity of health care services, improve the delivery of services and enable people to better manage their own health (198). Evidence on the efficacy of some technologies is limited, or shows limited effect, while other technologies promise benefits for the health care system and for improvement in individual health outcomes (199).

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Electronic medical records – shared electronic medical records can overcome common problems in care continuity (200).

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Telemedicine services – people receiving psychiatric telemedicine services, such as psychiatric evaluations and medication management, have reported high satisfaction with their care (201), and video conferencing also has successfully delivered self-management programmes (202).

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Consumer health informatics – internet-based, self-management programmes have helped people with chronic disease (175, 203). A study compared internet-based hearing screening with conventional screening to demonstrate that the former could be accomplished successfully (204), and internet portals can offer “e-coaching” to prepare individuals for visits to primary care physicians and to discuss chronic conditions (180).

Addressing human resource barriers

Common barriers include health-service providers' attitudes, knowledge and skills, and ensuring that heath practices do not conflict with the rights of persons with disabilities.

People with disabilities may be reluctant to seek health care because of stigmatization and discrimination (205). People with disabilities may have experienced institutionalization or other involuntary treatment, abuse, neglect and persistent devaluation. Negative experiences in the health system, including instances of insensitivity or disrespect, may result in distrust of health providers, failure to seek care, and reliance upon self diagnosis and treatment (89, 206). Therefore, respectful, knowledgeable and supportive responses to people with disabilities from health-care providers are vital.

However, attitudes and misconceptions among health-care providers remain barriers to health care for people with disabilities (90, 207). Some health-care providers may feel uncomfortable about treating people with disabilities (157), and clinical decision-making may be influenced by negative attitudes and assumptions. The common misconception that people with disabilities are not sexually active often leads health professionals to fail to offer sexual and reproductive health services, for example (11, 79, 89, 208).

Health-care workers often lack adequate knowledge and skills on primary and secondary and co-morbid conditions associated with disability and how to effectively manage the health care needs of people with disabilities (89, 154, 209). Service providers may be unsure how to address health needs directly related to a disability and how to distinguish between health problems related and unrelated to a disability, and may not understand the need for comprehensive health care services (96).

Undergraduate training programmes for health-care workers rarely address the health needs of people with disabilities, for example (11, 145), and general practitioners frequently indicate that a lack of training influences their ability to provide health care for people with disabilities (143).

Limited knowledge and understanding of disability among health-care providers often prevents timely and effective coordination of health care services (96, 154), sometimes leading to inadequate examinations and uncomfortable and unsafe experiences for people with disabilities (210). Variations in treatment can be wide where health-care providers are unsupported by research and clinical guidelines related to people with disabilities. One study found that the main reason people with spinal cord injury were not prescribed medication for osteoporosis was because general practitioners lacked evidence-based guidelines (30).

The presence of a particular health condition is not sufficient to determine capacity (211). The assumption that people with certain conditions lack capacity is unacceptable, according to Article 12 of the CRPD. Denying people with disabilities the right to exercise their legal capacity may prevent them from taking an active role in their own health care. The way forward is supported decision-making, rather than guardianship or other forms of substitute decision-making (see Box 3.6).

Box 3.6

Sexual and reproductive rights of persons with disabilities. The United Nations Convention on the Rights of Persons with Disabilities (CRPD) specifies that persons with disabilities enjoy legal capacity on an equal basis with others (Article 12), have (more...)

Education and training for health care workers about disability is an important priority to increase awareness about the health care needs of people with disabilities and improve access to services (89, 127, 142, 143, 209, 217). Health-care workers should be taught the causes, consequences, and treatment of disabling conditions, and of the incorrect assumptions about disabilities that result from stigmatized views about people with disabilities (145, 150, 154).

A survey of general practitioners in France recommends the introduction of disability courses into medical school curriculums, relevant continuing education, and provision of adequate resources (157). In one innovative approach to education and training, people with disabilities educate students and health care providers on a wide range of disability issues, including discriminatory attitudes and practices, communication skills, physical accessibility, the need for preventive care, and the consequences of poor care coordination (145, 154). Training delivered by people with physical, sensory, and mental health impairments may improve knowledge of issues experienced by people with disabilities (142).

Integrate disability education into undergraduate training

Educators are increasingly teaching students about communicating with patients, including people with disabilities (144), and many studies have reported successful outcomes across a range of health professionals:

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A study of Australian fourth-year undergraduate medical students indicated a significant change in attitudes towards people with developmental disabilities following a three-hour communication skills workshop (218).

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In a United States study, third-year medical students reported that they felt less “awkward” and “sorry for” people with disabilities after attending a 90-minute education session (219).

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A study found that medical students educated by individuals with disabilities helped students to learn how disability affects treatment plans, and helped students reflect on, and recognize, attitudes about disability (220).

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A study of fourth-year medical students used panel presentations led by individuals with disabilities. Students reported that they valued hearing about the personal experiences of people with disabilities, and about what worked and what did not in the medical setting and in patient-provider relationships (221).

▪

Introductory courses for students enrolled in the first occupational therapy and post-diploma management courses in the Russian Federation, developed and taught by the All-Russian Society of the Disabled, successfully developed positive attitudes in the students (222).

▪

A study to determine whether a change in curriculum affected nursing student's attitudes towards people with disabilities showed that their attitudes were more positive at the completion of their senior year (223).

Provide health-care workers with continuing education

Many health-care workers acknowledge a need for continuing education about disability (143). In one study service providers described specific educational needs, including information about how to access disability resources, coordinate care, make reasonable accommodations for people with disabilities, address sexuality and reproductive health needs, and complete forms for disability status (209). Evidence from the United Kingdom found that while practice nurses in primary health care generally had positive attitudes towards working with people with intellectual impairment, they regarded training in this area as a priority (224).

The Rehabilitation Council of India implemented a national programme (1999–2004) to educate medical officers working in primary health care centres about disability issues. Objectives included disseminating knowledge about prevention, health promotion, early identification, treatment, and rehabilitation; raising awareness about services for people with disabilities; and sensitizing officers about general disability issues such as legislation and human rights. On conclusion of the programme 18 657 medical officers from a baseline figure of 25 506 had received training (225).

Support health care workers with adequate resources

Evidence-based clinical practice guidelines can support health professionals in providing appropriate health care to people with disabilities. For example, the Clinical guidelines and integrated care pathways for the oral health care of people with learning disabilities (226) helps health professionals to improve the oral health of people with learning impairments. The manual Table manners and beyond describes and provides pictures of alternative examination positions to assist clinicians in gynaecological examinations for women with disabilities (132). Resource directories can also assist health workers to refer patients to specialists, and link people with disabilities to community-based services including exercise programmes, self-help groups, and home-care agencies. Disseminated to a wide audience including health care workers, the Directory of disability services in Malawi details all disability-focused organizations, groups, and services in Malawi (227).

Conclusion and recommendations

People with disabilities experience health disparities and greater unmet needs in comparison to the general population. All countries need to work towards removing barriers and making existing health care systems more inclusive and accessible to people with disabilities.

This chapter has identified several strategies to ensure that persons with disabilities can achieve their highest attainable standard of health including: financial measures to improve coverage and affordability; measures to improve service delivery, including training of health-care personnel; measures to empower people with disabilities to improve their own health; and measures to improve research and data to monitor, evaluate, and strengthen health systems. A range of strategies are needed to close the gap in access to health care between people with and without disabilities. Given the limited evidence available on the efficacy of some of these strategies across different contexts and groups, costs and health outcomes must be carefully evaluated.

In realizing the recommendations summarized below, a broad range of stakeholders have roles to play. Governments should develop, implement, and monitor policies, regulatory mechanisms, and standards for health care provision to ensure that they include people with disabilities. Service providers should provide the highest quality of health services. Service users, disabled people's organizations, and professional organizations should increase awareness, participate in policy development, and monitor implementation of policies and services. Through international cooperation, good and promising practices can be shared and technical assistance provided to countries to strengthen existing policies, system, and services.

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