Impact of Medical and Technological Advances on Survival Rates of People with Disabilities

2.1 Increase in life expectancy of people with disabilities

Fig 1: Life expectancy with disability Fig 2: Life expectancy with severe or profound limitation

The changing survival of children with Down syndrome over the past 50 years presents a good example of the increase in life expectancy for people with Down syndrome. Glasson et al. (2002) found that the life expectancy of 1,332 people with Down syndrome in Western Australia between 1953 and 2000 was 58.6 years and 25% lived to 62.9 years. In other words, the past 50 years the life expectancy of people with Down syndrome has increased by 0.94 life years per calendar year to a median life expectancy of 60 years compared with an increase of 0.22 life years per calendar year in the general population of Australia during the same period (Bittles & Glasson, 2004). The increase in survival indicates that the life expectancy of people with Down syndrome is approaching that of the general population (Glasson et al., 2002). Furthermore, it has been studied that survival rates for the first year of life have improved from below 60% in 1940-1950 birth cohorts, up to 80% in 1950-1970 birth cohorts, and over 90% in 1980 birth cohorts (Bell et al., 1989; Fabia & Drolette, 1970; McGrother & Marshall, 1990; Thase, 1982). Strauss et al. (2007) found that children with severe disabilities and in adults requiring gastrostomy feeding, mortality rates fell 3.4% per year for the 20 years between 1983 and 2002. This upward trend in life expectancy is noted for cerebral palsy, spina bifida, intellectual disability and neurological diseases (Hemming et al., 2006; Oakeshott & Hunt, 2003; Patja et al., 2000; Plioplys, 2003).

Technological and medical advances have resulted in increased survival of people with disabilities. However, in some cases, these advances have led to increased rates of disability. For example, advances in perinatal care have resulted in increased survival rates for extremely low birth weight infants. Associated with improved survival rates for immature infants could result in increased rates of disability and poor quality of life for the survivors (Wilson-Costello, 2007) which need to be addressed.

2.2 Ageing of people with disabilities

In Australia, the proportion of people ageing with a lifelong disability is rapidly increasing (Bigby, 2002; AIHW, 2006a). The number of people over the age of 60 years with lifelong developmental delays is expected to double by 2030 (cited in Barnhart & Connolly, 2007). The beginning of ageing for some people with disabilities is earlier than the general population. Studies in the US have shown that the beginning of ageing for people with developmental disability takes places when the individual is in the mid – to late 40 years or early to mid-50 years of age (Janicki & Wisniewski, 1995, cited in AIHW, 2000). Premature ageing has been consistently reported in people with Down syndrome and intellectual disability resulting from other chromosomal causes (Janicki & Wisniewski, 1995 and Suttie, 1995, cited in AIHW, 2000). Ageing people with Down syndrome are more likely to have hearing and vision impairments, hypothryroidism, musculoskeletal problems and congenital heart disease (AIHW, 2006a). Health care systems need to be capable of responding to the changing needs of this population as it ages. Gaps in policy and provision of service across sectors such as aged care and disability need to be filled and resourcing should be geared to facility ageing in place (Bigby, 2002).

There is evidence to show that there is earlier onset and higher incidence of disease for some people with disabilities. For example, studies have shown earlier onset and higher incidence of Alzheimer’s disease in people with Down syndrome (Bigby, 1998). Likewise, it was noted that some people with intellectual disability may acquire dementia much earlier in life at round 50 years. Glasson et al. (2002) noted that he increase in survival is accompanied by significant mid-life health problems. Between 38 – 78% of people with Down syndrome have hearing loss and the identification and treatment of hearing loss is a major part of medical management of people with Down syndrome (Roizen et al., 1993; Dahle & McCollister, 1988; Balkany et al., 1979).

Advances in medicine and technology over the decades can benefit people with disabilities. For example, increased access to surgical methods for repairing congenital heart defects in children with Down syndrome has occurred in recent decades, resulting in improved survival rates (Leonard et al., 2000). To enable people with disabilities to have access to advances in medicine and technology, a shift in social attitudes towards equitable medical treatment of people with disabilities and overcoming access barriers are important. In addition, changes in medical practice and attitudes are essential for advances in medicine and technology to have maximum impact on people with disabilities. Woolf et al. (2007) noted that it is these social and cultural shifts that drive both the development and accessibility of advanced medical care.

2.5 Medical training and best-practice medicine

Health care practitioners are often ill informed about the health care needs of people with disabilities, and the health related challenges faced by people with disabilities. As a result, people with disabilities do not receive the best treatment available. Furthermore, information about disability medicine and disability should be taught at an undergraduate level to medical and allied health students (Iacono et al., 2004). Best practice guidelines based on trials for various conditions are effective ways of ensuring that the best methods for treatment are kept up to date and individuals have the best chance of receiving the best care available (Myers & Johnson, 2007; White et al., 2007). Evidence-based medicine also serves to focus advances in medical technology via governing medical bodies selectively endorsing those advances and practices that are safe and effective, increasing the chances of maxmising benefit and minimising risk to the patient and to re-focus efforts on prevention (Fleisher et al., 1998). A good example of this is the promotion of folate and its fortification in foods. Bower et al. (2007) showed a decline in neural tube defects, anencephaly and spina bifida from 1980 to 2006 in Western Australia (Table 1) which is thought to be due to increased intake of maternal periconceptional folic acid supplements and in foods fortified with folic acid.

Table 1: Numbers and proportions of cases of birth defects by year of birth.

Defect	1980-84 Number Proportion*	1985-89 Number Proportion*	1990-94 Number Proportion*	1995-99 Number Proportion*	2000-04 Number Proportion*	2005 Number Proportion*	2006 Number Proportion*
Neural Tube Defects	207 1.9	238 1.9	252 2.0	203 1.6	182 1.5	44 1.6	34 1.2
Anencephalus	92 0.8	111 0.9	110 0.9	91 0.7	79 0.6	16 0.6	10
Spina Bifida	96 0.9	106 0.9	116 0.9	96 0.8	89 0.7	23 0.9	21 0.7

* Proportions are per 1,000 births and are only calculated if number of cases is greater than 13.

2.6 Coordination of health care

There is a need for health services to continue the shift from episodic care targeting acute symptoms to care management over the lifespan of the person with a disability as well as coordination of health care from various health providers. For example, in the case of spina bifida, many medical disciplines are involved in the care of an individual (Dunleavy, 2007). With advances in diagnostics, chronic care of spina bifida can begin prenatally and continue through the lifespan. Early intervention and sustained care can prevent disease sequelae such as kidney failure common if not treated in people with spina bifida (Ahmad & Granitsiotis, 2007; Dik et al., 2006). Sustained care can be further enhanced by multidisciplinary teams, which include generalists, such as a nurse coordinators (Dunleavy, 2007). The coordination of care can also improve the quality of life and experience of care for people with disabilities.

2.7 Awareness and accessibility of medical and technological advances

Many people with disabilities may not be aware of medical and technological advances that could help them to live more meaningful lives. In addition, they may not be able to afford to purchase equipment or avail surgery or pharmaceutical advances. For example, assistive technology, particularly the high tech ones are expensive (Shaughnessy et al., cited in Columbus, 2006). Kapperman et al. (2002; cited in Columbus 2006) noted that many students who could potentially benefit from assistive technology were not receiving them. This was mainly attributed to funding, competition and the conservative nature of education (Tinker, 2001 cited in Columbus, 2006).

2.8 Specific needs of women with disabilities

Women with disabilities are more likely to develop secondary conditions such as obesity, heart disease, hypertension, type II diabetes, osteoporosis and depression (Piotrowski and Snell, 2007). These women are likely to require the same or more intensive screening protocols as women in the general population. Women with disabilities who are in a wheel chair require special mammography equipment that is not universally available. The barrier of ‘invisibility’ of health care for women with disabilities needs to be overcome including appropriate support for transition points in the lifespan such as menopause that should not be ignored or de-emphasised in women with disabilities (Piotrowski and Snell, 2007).

2.9 Indigenous people with disabilities
In Western Australia, 2,277 Indigenous Western Australians (4% of Indigenous Western Australians population) reported a need for core activity assistance (ABS, 2007). The life expectancy of Indigenous people in Western Australia is still 16 years less than non-Indigenous people. Indigenous people are known to have less access to services and advances in medicine and technology. The geographic dispersion of the Indigenous population is an important fact in delaying or limiting access to services. Many Indigenous people also experience extreme socio-economic disadvantages that impact on their health and wellbeing. Indigenous people have significantly lower incomes, higher unemployment rates and poorer educational outcomes. There is a need to improve access to services for Indigenous people.
2.10 Impact of economic rationalism and decision-making
Over recent decades, economic rationalist principles have increasingly been applied by successive Australian governments to the health sector and impacted on decision making in terms of service rationing and provision (Germov, 2005). A central tenant of economic rationalist theory is the linkage of limited resources with their most effective utilisation and, market forces can dictate how limited resources will benefit the most people (Walker, 2003). Komesaroff (1999) noted that economic rationalism has seen the shift in decision-making from strategic long term goals to increasing reliance on the market to guide health sector development that is expected to put downward pressure on health costs and shift power balance from providers (doctors) to consumers (patients). The imperative of economic rationalism has been to ‘do more with less’ which raises concerns of equity and accessibility of service delivery (Leeder, 2003). Competition and economic incentives can lead to over servicing in some areas and under servicing in others (Komesaroff, 1999). The encroachment of commercial interests as a result of privatisation runs the risk that high return services are prioritised over looking after the needs of the elderly, chronically ill and people with disabilities (Brooks, 1999).

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