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Navigating the learning disability landscape.

New Zealand has the distinct status of being one of the few countries in the world to have completed the process of deinstitutionalisation. This achievement is remarkable and was driven by the philosophies of normalisation (1) and social role valorisation; (2) these symbiotic approaches continue to challenge society to enable and facilitate the meaningful inclusion of citizens with a 'learning disability in the community.

Contrary to popular belief, the need for the registered psychopaedic or learning disability nurse in this post-deinstitutionalisation era, is neither outmoded nor diminished. From 19601991, a three-year education programme here ensured the existence of a distinct body of applied knowledge for the former. And it is an ongoing challenge to retain training for learning disability nurses in the United Kingdom. Is there still a place for this level of specialism in New Zealand nursing today? There continues to be competing demands within nursing education for all specialist areas, but expertise from overseas is still sought to work within the field of learning disability.

Poorer health outcomes Only 24 per cent of people with a learning disability are in residential care, hence the majority continue to live either independently or with family. This is important when considering how people may be supported to access health and disability services. Compared to the general population, this group experiences poorer health outcomes and greater prevalence of health issues such as epilepsy, mental illness, heart disease and diabetes, despite increased attendance at health services including hospital admissions. (3) These inequities and susceptibilities are not due to their disability per se, but rather to factors such as socio-economic status, health literacy, the quality of and accessibility to health services, health promotion and screening opportunities, and the lack of training for health and disability service professionals. (4) Another factor is diagnostic overshadowing --the tendency to ascribe changes in presentation to the disability, rather than explore physical or mental wellness. (5) These factors reflect the Social Model of Disability whereby society, or systems, may actually disable the individual, rather than the impairment itself. (6) Arguably, learning disability nurses are the best placed to work alongside the people themselves and their caregiving networks, to bridge the barriers which both construct and perpetuate this disabling experience.

What does this mean? Learning disability nurses consistently balance enabling choice, health promotion and co-ordination, education and advocacy, with their duty of care. A key part of the role is coming to know how the individual with learning disability interprets and understands their own world. A key goal, therefore, is to facilitate service access and delivery which is responsive to the person's needs, thereby ensuring positive health outcomes, enabling self-determination and, ultimately, meaningful lives. This translation of philosophy into pragmatic science is thus a significant part of the modern landscape of learning disability nursing.

Learning disability nurses work in a variety of roles. Non-governmental organisations employ them as clinical nurse specialists or health facilitators providing specialist assessment, targeted intervention, monitoring, and inter-agency liaison to meet health needs across all health settings. A number of district health boards provide specialist mental health services for people with a confirmed or suspected dual diagnosis, and services continue to develop for individuals who require support through the justice system. Current initiatives by care providers include the evaluation by Spectrum Care of implementing the Comprehensive Health Assessment Programme (CHAP) and IDEA Service's nationwide rollout of the education and well-being programme, My Health, My Choice, My Responsibility. The profession has seen the successful implementation of a CNS role, disability lead at Palmerston North Hospital (see pp30-31 Ed.). Learning disability nurses are also engaged in research (including at PhD level), covering topics such as body image, screening tools for autism and dementia, end-of-life care, ageing and the experience of individuals and nurses within mental health inpatient settings.

Where to from here?

New Zealand was a key driver in the development of the United Nations Convention on the Rights of Persons with Disabilities (2006). Signatory countries must ensure the meaningful representation and participation at all levels of service governance, development and delivery includes people with a disability. (7) There are opportunities for this to evolve further, as learning disability nurses engage people with learning disability as co-trainers, to work alongside their peers and health professionals to close existing gaps. Improving the accessibility of health promotion, screening and education at all levels is also needed.

It is time for existing initiatives to be recognised as examples of innovation and partnership. Learning disability nurses are calling for a nationwide approach to reduce the inequalities and identify the opportunities that could be harnessed--by all nurses--to improve the experience of health and well-being for all citizens with a learning disability.

Footnote: Intellectual disability is the legal term used in New Zealand. Members of international self-advocacy organisation People First are lobbying for learning disability to be used as it is easier to say and it also encapsulates more sense of identity. There is both legal and diagnostic significance between the two terms as they are applied in the New Zealand context. For the purposes of this editorial and in respect for People First, the term learning disability is used.

References

(1) Wolfensberger, W. (1972) The principle of normalization in human services. Toronto: National Institute on Mental Retardation.

(2) Wolfensberger, W. (1983) Social role valorization: A proposed new term for the principle of normalization. Mental Retardation; 21: 6, pp234-239.

(3) Ministry of Health. (2011) Health indicators for Hew Zealanders with intellectual disability. Wellington: Ministry of Health.

(4) Ministry of Health. (2013) Innovative methods of providing health services for people with intellectual disability: A review of the literature. Wellington: Ministry of Health.

(5) Ouellette-Kuntz, H. (2005) Understanding health disparities and inequities faced by individuals with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities: 18, pp1133-121.

(6) Chappell, A.L., Goodley, D. & Lawthom, R. (2001) Making connections: The relevance of the social model of disability for people with learning difficulties. British Journal of Learning Disabilities; 29, pp45-50.

(7) United Nations. (2006) Convention on the rights of persons with disabilities. New York: United Nations.

Henrietta Trip, RN, BN, MHlthSci (Nsg), PhD candidate (Otago), is a lecturer at the Centre for Postgraduate Nursing Studies, University of Otago, Christchurch.
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Author:Trip, Henrietta
Publication:Kai Tiaki: Nursing New Zealand
Article Type:Editorial
Geographic Code:8NEWZ
Date:Oct 1, 2014
Words:1031
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