2.5 A world of peculiarities
2.6.2 Prevalence of Down syndrome disability
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disability and impairments, addressed from either medical deficit or social, human rights paradigms leads to its just or unjust classification affecting prevalence data which in turns affects government financial allocation.
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which presents a body as aesthetically or functionally different, while disability is regarded as a social construct in which impaired bodies are treated with discrimination and exclusion.
Lalvani and Broderick on the other hand, do not strictly follow person-first syntax usage and in unity with a growing section of the disability rights community “often use ‘identity-first’
syntax (e.g., “disabled people”), which positions disability as a central, integral, and valued facet of a person’s identity, rather than as a separate—and possibly negative—entity or appendage” (Lalvani & Broderick, 2013, p. 482). What is important to me is that impairment is not to be equated with disability and the focus should be primarily on the person and secondary, the impairment or disability.
UNCRPD (2006) define disabled people by inserting that they “include those who have long- term physical, mental, intellectual or sensory impairments which, in interaction with various barriers, may hinder their full and effective participation in society on an equal basis with others”. CWDS are not a homogenous group; there are variations within each of the three types (Trisomy 21, translocation and mosaicism). The characteristics of DS are noticeable but Corker (2001) cautions that to viewdisability as ‘visible’ not only generates an oxymoron, but is also exclusionary. Lalvani and Polvere (2013) indicate that meaning of disability is
embedded in socio-cultural contexts adding that disability is not an absolute condition (Lalvani, 2008, p. 437)
I use the term ‘disabled’ judiciously, to describe children or young people or adult who have intrinsic or inherent learning disability associated with intellectual impairment. The condition of DS is a long term impairment which coupled with social barriers can restrict access to participate in all aspects of society.
Disability is a normal phenomenon ....it should be possible to estimate the sizes of the various disability populations, determine their needs and develop appropriate and cost- effective strategies to meet those needs. This is yet to be accomplished however, largely because disability is a complex interconnected bio-medical, social and environmental phenomenon that is yet to be fully analysed and understood (Metts, 2004, p. 2).
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‘Estimate size’, ‘determine needs’ and ‘accomplish’ are key words and phrases in determining the nature of support by obtainingrelevant data at the outset. Croft (2012) asks a pertinent question in her research title “Do we need to know how many disabled children there are?”
and goes on to provide a detailed explanation of the merits of statistics. This advances the discourse on provision of accessible schooling spaces for CWD to which I subscribe. Data on disability has the prospect to aid throughout the phases of processing inclusion of CWD in formal schooling: advocacy, policy development, monitoring and evaluating.
Accessing comparative record of statistics, during advocacy for non-discriminatory laws, procedures and finance, can galvanise and accelerate (Albert, Dube, Hossain & Hurst, 2005) disability onto national and international political agendas (Fujiura, Park & Rutkowski- Kmitta, 2005).This is useful when comparing the status of educational opportunities of children with disabilities to their non-disabled peers. Such information can contribute to discourses of prevalent inequalities at an international and intra-national level. This may also incorporate movements in access opportunities for and between diverse populations based on culture, constituency or specificities of impairment (UNESCO, 2010). During the policy development phase, specific data on background characteristics can identify potential children at risk. This information can contribute to appropriate and targeted strategies of intervention.
(UNESCO, 2010). When assembled data is disaggregated it can provide further information on specificities: of disabilities and of inequality correlated to gender (Rousso, 2003), language and context (Muthukrishna, 2011) or ethnicity (de Beco, Hyll-Larsen & Balsera, 2009). In the monitoring and evaluating phase, the effect of interventions (UNESCO, 2004; Modern, Joergensen & Daniel, 2010) is measured. The cornerstone of these phases of data is to enable improved provision of accessible and quality education for CWD.
Down syndrome is a well-researched and documented genetic condition with over 12 000 publications worldwide (Christianson. 1996). Multidisciplinary related topics to DS are accessible through a range of nursing, medical, psychiatric, educational, anthropological, journal articles and books. Despite the availability of information on diagnosis, risks, treatment of related illnesses and teaching resources, Statistics South Africa record that
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discussions issues related to disability by important participants, have progressively tracked the absence of adequate and correct information on prevalence of the condition.
Sifting through various websites reveals figures across the world suggesting an increase of DS cases and a quick overview indicates this. In the USA, “approximately 1 in 830 babies are born with Down syndrome”. 8 From 1979 to 2003, “the prevalence (total number of cases of a disease in a population at a specific time) of DS at birth increased by 31.1%, from 9.0 to 11.8 per 10 000 live births in ten US regions” (Shin, Besser, Kucik, Lu, Siffel, & Correa, 2009).
The National Down Syndrome Cytogenetic Register in UK, which has collected statistics on prevalence of DS births since 1989, showed general increased numbers in diagnosis with approximately 840 cases throughout the UK each year. Worldwide, it is estimated by Down Syndrome Education International (DSEI) that 220,000 babies with DS are born annually.9 In UK presently, it is estimated there are 12 800 persons with DS below eighteen years of age.
Longevity with DS is to live beyond 60 years which is achieved in developed countries due to their enhanced medical care, an improvement from 1970s, in which life expectancy of those with DS was only 30 years.
To attest to the growing population of DS worldwide and the incidents of mild to moderate learning difficulties, DSEI noted that it affects 1 in 400 babies born in various parts of the world, depending on maternal ages, and availability and accessibility of prenatal screening policies. In countriesincluding Ireland and United Arab Emirates, where it is considered illegal to abort a foetus with DS, its occurrence is greater. On the contrary, France records lower incidents in DS prevalence due to early pregnancy terminations for the same diagnosis (Collins, Muggli, Riley, Palma & Halliday, 2008).
Access to Down Syndrome South Africa (DSSA) national website, indicates that the incidence of DS has steadily increased since 1979. From 9.5 between 1979 and 1983 the number has risen to 11.8 between 1999 and 2003. In South Africa, the incident statistics of
8 http://www.who.int/genomics/public/geneticdiseases/en/index1.html
9 http://www.dseinternational.org/en-gb/about-down-syndrome/
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persons with DS persons is proportionally higher10 compared to the rest of Southern Africa. A study over a twenty year period on prevalence of DS in Cape Town between 1 January 1974 and 31 December 1993 showed 784 Down syndrome pregnancies, of which 95% were
trisomy 21 (Molteno, Smart, Viljoen, Sayed & Roux, 1997). A similar sentiment is expressed by Irvin, Basu, Richmond, Burn & Wren (2008) who note that numbers of Down syndrome births are still surprisingly high.
The trends, internationally, is a signal to me that advocates for CWDS cannot retreat while there is much work still to be done.
The South African Census (2011) and other national household surveys, locate disabilities within category with general questions. In 2011, when the most recent Census was conducted, disability was referred to as impairment, and listed generic categories in the question on type(s) of disability a person may have:
1 = Sight, described as being blind or having severe visual limitation;
2 = Hearing, as deaf or profoundly hard of hearing;
3 = Communication, (speech impairment);
4 = Physical, need of wheelchair, crutches or prosthesis, limb hand usage limitations;
5 = Intellectual noted as experiencing severe problems with learning;
6 = Emotional associated with behavioural or psychological challenges.
The next question following from this is: “Does the disability seriously prevent (the person) from full participation in life activities (such as education, work, social life, etc.)”? (n. p.) Category- ‘5 capturing ‘Intellectual’, has bearing on CWDS; however, it is too broad a category to address the variations within the types of DS. The non-specific design of the questionnaire cannot yield statistics specifically about prevalence of genetic condition such as DS as it is not designed for that purpose. The United Nations Children's Fund (2010) noted that it is a greater challenge to measure disability in children than adults because the natural
10 http://www.rightdiagnosis.com/d/down_syndrome/stats-country.htm
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growth process cannot predict uniform pattern of characteristics due to its evolving nature.
UNICEF (2012) estimate that such fluidity, complicates the task of estimating function specifically in differentiating significant restrictions from variations in typical developmental processes. In the absence of accurate recorded statistics, in my opinion, national planning to address specific needs of children with DS will remain substantially unachieved. I share the same concern of Modern, Joergensen and Daniels (2010) that ‘relatively positive’ legislation drafted at national and international levels are inadequate in effecting transformation to existing education systems deliver sufficient change in education systems.
In South Africa, on websites where statistics are available, the disclaimer is that it is not reliable. Unreliable data may be attributed to a variety of reasons, including that DS is incorporated in an all-encompassing category of disability. The other reason may be with the varying definitions of disability. The medical approach to issue of disability equates disability to be one and the same as impairment and cases of impairment are counted as disability which skews the result. Any survey instrument that is structured on the premise of impairment will yield reduced prevalence data than if it focussed on limitation of activity (Mont, 2007).
According to Statistics South Africa, other factors which affect results include methodology of data collection; condescending attitudes towards those affected by impairments; inadequate service delivery particularly to those in rural or underdeveloped areas and places with incident of violent incidents. Statistics South Africa (2011) states that these listed factors militate against effective gathering of data, thereby affecting the overall representation.11 In
deliberating on the information, I have surmised that the broad categorisation of disabilities, lack of definitive records at birth and unavailability of estimated statistics specifically of persons with DS in South Africa, means that “a credible needs assessment based on a national survey of the prevalence of disability” (UNESCO, 2010, p. 203) remains unachieved.
From the information I did locate I was able to extract the following international trend: that compared to the occurrence rate of other genetic conditions, DS is considered to be quite common (Buckley, 2000) with the frequency of live births with this condition, increasing in
11 http://www.statssa.gov.za/publications/Report-03-02-44/Report-03-02-44.pdf
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UK and many other countries (Morris & Alberman, 2009). With research showing that life expectancy for people with Down syndrome is improving with medical care and support (Fernhall, Mendonca & Baynard, 2013), it has become more important that target research be conducted to determine the social benefits (Knowles, 2013)). In addition consideration should be given to post schooling as it does have financial implications for inclusion. It is preferable to be a contributing member of society with potentially independent living against the
alternative of indefinite financial dependency on social welfare.
The gaps identified in accuracy of statistics and classification affect government macro planning strategies. My concern now rests on how do parents proceed to access schooling spaces against this deficit background. The next section focuses on national and international efforts on gaining admission into inclusive settings and the outcomes.