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.