October | 2012 | Low Visionary

Monthly Archives: October 2012

by Robyn | October 26, 2012 · 11:00 am

Health literacy, a disability view

This is not so much about disabled people needing health literacy, as about medical professionals being disability literate. By that I don’t mean knowing about particular medical conditions, but rather about an understanding of this complex and nuanced state of being, and the etiquette that ensures disabled people are treated with dignity, respect and fairness. Perhaps we should turn health literacy on its head and ask, are health professionals disability literate?

And just in case you think there are only “two people who use wheelchairs in Wellington” as a politician once told me, we are talking about 20% of the population and an ageing population overall with higher rates of disability.

The Convention on the Rights of Disabled people, (CRPD), is very clear. Article 9 and Article 21 deal with accessibility and with access to information and Article 25 with the right to health. New Zealand is accountable as it has ratified the Convention and there are clear monitoring and reporting processes. Some of the information included here is taken from research for and monitoring of the CRPD.

The New Zealand government report, To have an ordinary life, which chief human rights Commissioner David Rutherford has described as being” thrown in the rubbish bin” by the government gives some clear direction about health literacy.

The report highlights the poor health status of people with intellectual/learning disabilities as a result of systemic discrimination. It points to poor diagnosis and failure to treat conditions because of poor communications between health professionals and patients with learning disabilities. This group are high users of prescription medicines as a result. The report says that District Health Boards, (DHBs), have to improve service access policy, assessment tools and staff education. A recommendation from the report was that health promotion tools are designed to be accessible to this group of people.

The Health passport project is designed to increase medical staff understanding of disability. The individual disabled person owns the document which contains the information they want to share with health professionals about their impairment/s and the ways staff can help and support them, what works and what doesn’t. This may be critical for a person’s wellbeing, especially if they are receiving treatment for something other than their impairment/s. The Health Passport initiative is currently being trialled in Wellington region DHBs.

For Deaf people, who use New Zealand Sign Language as their primary means of communication, the availability of Sign Language interpreters is problematic. Some places have none. Blenheim, with a population of 30,000 and a sizeable Deaf population has no professional Sign Language interpreters. The West Coast of the South Island also has none. This is an even greater problem for Maori Deaf with only two bi lingual interpreters in the whole country.

In the research for the Convention Coalition monitoring report, Disability Rights in Aotearoa New Zealand disabled people spoke of the lack of access to health related information in alternative formats, including Easy Read. One blind research respondent said in the report,

“The health system does not provide information to blind people in ways which are accessible. Prescriptions have printed labels, and we can never be sure that the directions are read in full or accurately. Lack of information about what is being prescribed, and when it should be taken presents a significant health risk.” P47

The report recommends that “the Ministry of Health, in partnership with the Association of Blind Citizens of New Zealand, investigate the production of all health related brochures and medication labels using the European Union’s standards for accessibility.” P83
It also recommended that People first be consulted for advice and information about production in Easy Read format. P83

Disabled people also wanted equitable access to their own health information, and wanted inclusion as part of the general population in health promotion campaigns. This is an area which has received little or no attention to date.

Earlier posts relating to health literacy are; Health literacy for grown-ups and Health literacy and the right to health.

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Low vision rights and services

For a variety of reasons low vision, partial sight, vision impairment, call it what you will, has been in my mind lately.

Reviewing papers as a member of the scientific committee for a Text Customisation for Readability Symposium has focused my critical thinking on the subject. With the folks at The W3C Web Accessibility Initiative who are running the symposium I have been considering the relationship text customisation has to do with web accessibility. I have reflected on my own experience while recognising that text customisation is relevant to a much larger group of people with different impairments.

The problem

Low vision has many implications for everyday living, and reviewing the papers reminded me of an experience last year. People from AccEase attended the Every Body In conference, New Zealand’s first disability Studies Conference, at Otago University, where we presented two papers. Among many thought-provoking presentations one in particular caught my attention, for very personal reasons. Writer Lynley Hood and Gordon Sanderson, an ophthalmologist, focused on the lack of services and support for people with low vision who do not meet the criteria for services from the Royal New Zealand Foundation of the Blind (RNZFB), despite their obvious needs. There are few support services for them elsewhere either, apart from some medical services.

One point Lynley made was the difficulty of living with declining vision without any support when it would make a real difference to quality of life. People currently have to wait until they have so little vision that they qualify for membership of the RNZFB. But by this time the quality of life has already become very low, and rehabilitation will be more traumatic and difficult because of the lack of access to support services at an earlier stage.

The RNZFB has predicted that by 2020 the total number of people with vision loss, as opposed to blindness, will be almost 160,000.

My experience

Their presentation caught my attention because I grew up in exactly that situation before becoming eligible as an adult for RNZFB services. For much of my young life I felt excluded from many mainstream activities, yet had no social or cultural frame of reference as someone with a vision impairment. Although I experienced real difficulties and discrimination in education and other areas of daily life growing up with low vision, there was little support for my family and me. That seems to still be the case, and it is particularly affecting our ageing population, although I suspect that there are children who are slipping through the net resulting from fewer vision and hearing checks in schools.

Incidence

An increasing number of older people with partial sight are in the position of having no vision related services. The RNZFB has predicted that by 2020 the total number of people with vision loss, as opposed to blindness, will be almost 160,000. This group of people is growing at a faster rate than the group of blind people. According to Vision 2020 Australia the risk of low vision and blindness increases three-fold with every decade of age after 40.

The situation is the same globally. The U.S. Census Bureau estimates that the world’s 65-and-older population is projected to triple by mid-century, from 516 million in 2009 to 1.53 billion in 2050. This will create a huge group of vision-impaired people.

Impacts

In New Zealand the RNZFB is a not-for-profit, receiving some government funding but it must also fundraise to provide services. The criterion for membership is an arbitrary level of vision, or lack of it. This has been challenged as a medical rather than a rights-based approach to sight loss and blindness. It is historical and opening the floodgates might not be an option. But such an arbitrary decision does not take account of the level of need among the low-vision or partially sighted population.

The everyday difficulties people with low vision face are different from those who are blind, and this is often not appreciated by the general population and those providing public and other services. Most people tend to see the issue in terms of being able to see or not being able to see. The reality is much more gradual and subtle, with low vision presenting in a variety of forms and resulting in a variety of communication and other challenges in a fully sighted world.

Problems include accessing mainstream technology such as computers, and web sites, although accessible ‘out of the box’ technology such as IPads can help. Mobile phones can be tricky. People with low vision can’t easily read documents people with regular sight can read, or see the signs on approaching buses. Timetables and airport displays are a nightmare, and unmarked steps and curbs are a danger. Regular eye checks will help identify medical conditions, but won’t give access to services which might help people overcome these barriers. While assistive technology can be bought over the counter and on the Internet it is expensive and good advice is necessary before buying.

Social isolation is critical, as a result of loss of independence and confidence, particularly among older people who may be afraid to go out on their own, or who can no longer enjoy social, cultural and sports events.

Solutions

Blindness is an absolute, well sort of. Low vision is complex. Does the solution lie with a government reluctant to spend more, or with a private sector being more accommodating? Does it lie in activism by a diverse group who, like hearing impaired people, as distinct from Deaf, are not known for their political activism. Unlike hearing impaired people, partially sighted people have no organisation to represent them. (Members of the Association of Blind Citizens must be members of the RNZFB which of course excludes many people with low vision.)

Like many other issues of access the problems faced by partially sighted or low vision people can be seen as a human rights issue. But human rights have to be analysed and grasped firmly and fought for by joining together in organisations of self-identifying disabled people, such as DPA NZ rather than by individuals struggling alone.