Despite stark warnings, intellectually disabled Kiwis neglected by Government for another 20 years
New Zealanders have long life expectancies, but new research from IHC shows that intellectually disabled New Zealanders die up to 20 years earlier than the rest of the population.
The report, From Data to Dignity: Health and Wellbeing Indicators for New Zealanders with Intellectual Disability, reveals people with intellectual disabilities are experiencing poor outcomes in most areas of life. This research is a world first, providing comprehensive quantitative data about people with intellectual disability across many different areas.
IHC Advocate Shara Turner says the insights that it has provided are very troubling and show the outcome of the lack of political will to improve the lives of intellectually disabled people that organisations like IHC have been calling out for many years.
“Intellectually disabled people overwhelmingly live in more deprived areas, achieve fewer qualifications, don’t travel overseas, have poor health outcomes, experience more poverty, violence and crime, have low internet access and have extremely low levels of employment,” says Shara.
”The poor health statistics haven’t improved in the past 20 years, despite the National Advisory Committee on Health and Disability calling for an end to the neglect of health issues for people with intellectual disabilities.”
In 2003 the committee said, “Many adults with an intellectual disability endure prolonged suffering from health conditions that are treatable, relievable and curable, yet receive inadequate medical management.”
Despite that, the last look at their health status was more than a decade ago with the 2011 report, Health Indicators for New Zealanders with Intellectual Disability.
Frustrated that neither the Ministry of Health, nor Whaikaha, the new Ministry of Disabled People, had any plans to update the report, IHC commissioned research team Kōtātā Insight to find out more.
Kōtātā researchers Luisa Beltran-Castillon and Keith McLeod have extracted data about the outcomes of people with intellectual disability from the Integrated Data Infrastructure (IDI) one of the more comprehensive linked datasets in the world. The IDI holds de-identified data on nine million individuals in New Zealand, dating back to 1840, collected from government agencies, surveys, and non-governmental organisations over many years.
Shara says the research reveals what little progress has been made on targeting or improving any of the outcomes experienced by people with intellectual disability.
“Intellectually disabled people die earlier than any other group of New Zealanders, and they experience worse outcomes than the rest of the population in every domain,” says Shara. “The Government has not implemented any interventions to address this inequity.”
One measure that New Zealand is sorely lacking is an annual health check for people with intellectual disability. Other countries have introduced annual health checks as a way to try to improve the health of this group. In papers to several international conferences this year, Shara has urged the introduction of free annual health checks focused on preventative healthcare for intellectually disabled people – using something like the Australia’s Comprehensive Health Assessment Program (CHAP). IHC has been advocating for the introduction of annual health checks since 2007.
“There is robust evidence supporting its implementation here. Looking at the costs and assumptions of the benefits of this intervention it would make economic and social sense to implement a programme like CHAP in New Zealand.
“Most other Western countries have national strategies that target intellectually disabled people, particularly to try to improve health outcomes, but New Zealand has not developed any strategies like this.
“Intellectually disabled people have been neglected by the government since 2003.”
The code used to find the data can be run in the IDI in the future to provide new data to show us how people with intellectual disability are faring.
IHC has developed a web app to allow disability advocates, academics, policy makers and others access to the results.
An opportunity to do better
Health - Our research shows that compared to the general population, people with intellectual disabilities are:
- 2.2 times more likely to have coronary heart disease
- 1.5 times more likely to have chronic obstructive pulmonary disease
- 1.7 times more likely to have diabetes
- 1.1 times more likely to have cancer
- 3 times more likely to have a mood disorder
- 16 times more likely to have a psychotic disorder
- 3.6 times more likely to have dementia
- 2.7 times more likely to have a mental disorder
- 2.7 times more likely to visit the emergency department
- 3.6 times more likely to have a potentially avoidable hospitalisation
- Have secondary health costs on average almost five times higher
- 24% of children with an intellectual disability live in the most deprived areas in NZ compared to 15% of the general child population.
- 44% of Pacific and 35% of Māori children with an intellectual disability live in the most deprived areas in New Zealand.
- 1 in 5 children with an intellectual disability live in a crowded home.
- Children with an intellectual disability are 7 times more likely to be placed into state care than general population.
- Parents with an intellectual disability are 15times more likely to have their child placed into state care than general population.
- Almost 20% of children with an intellectual disability were reported by police as being present during a domestic violence call.
- Less than 50% of people with an intellectual disability aged over 45 have access to the internet.
- 43% of people with an intellectual disability have a qualification compared to 87% of the general population.
- 21% of people with an intellectual disability are in paid work in comparison to 78% of the general population.
- Intellectually disabled people are 3.3 times more likely to be a victim of crime.
IHC is calling on the following actions to significantly improve a health system failing some of the most vulnerable in Aotearoa New Zealand:
- Free annual health checks that are focussed on preventative healthcare for intellectually disabled people. New Zealand needs a nationally endorsed, culturally appropriate, Annual Health Assessment tool. Primary health care professionals competent in using the tool, who have the time needed to carry out the assessment and who know the person being assessed, are also needed. In the United Kingdom, General Practitioners are incentivised and are paid to carry out annual health checks.
- Extra training on intellectual disability rights and reasonable accommodations for all doctors and nurses.
- Funding for carers and other people close to the intellectually disabled person to be part of the care team if the intellectually disabled person is in hospital.
- Preventative and screening programmes targeted at intellectually disabled people in areas such as cervical, breast and bowel cancer screening. Research needs to be completed on when this screening should be done as many intellectually disabled people start experiencing these diseases earlier than those in the general population.
- Improving the support for intellectually disabled people and their families:
a. Easy Read and video resources to improve health.
b. Teaching people about health and how to speak up about their health.
c. Getting medical centres to develop policies to improve the health of intellectually disabled people.
d. Having disability liaison officers – Australia has already established Down Syndrome Health Ambassadors who engage with the Down syndrome community.
- Having an intellectual disability marker in health records and collect, analyse and release disaggregated data about intellectually disabled people.
- Create a wellbeing framework that measures the wellbeing of intellectually disabled people.
- Create a mortality review service improvement programme about the deaths of intellectually disabled people. There is one in the United Kingdom called LeDeR.
- Better data collection and reporting of the findings across government on the living situations of people with intellectual disabilities. Further research is needed, for example:
a. Use 2023 Census data and updated administrative data to update a selection of indicators to provide monitoring data, and potentially use the 2023 Disability Survey to explore further outcomes like subjective wellbeing, social connections and access to services.
b. Undertake research that aims to better understand the living situations of people with intellectual disability, their individual and household income and the material wellbeing of the household.