Strong Voices

The health of people with intellectual disabilities is being neglected by health authorities.

Research commissioned by IHC reveals people with intellectual disabilities are more likely to have coronary heart disease, chronic obstructive pulmonary disease, diabetes and cancer.

And that’s just for starters. 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 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 combined statistical data from the Integrated Data Infrastructure (IDI), one of the more comprehensive linked datasets in the world, with the lived experience of intellectually disabled people.

The IDI holds de-identified data on individuals and households in New Zealand, collected from government agencies, surveys and non-governmental organisations.

IHC Advocate Shara Turner says the research reveals what little progress has been made on improving the health of people with intellectual disabilities. “Intellectually disabled people experience significant poor health outcomes and decreased life expectancy. The New Zealand Government has not implemented any interventions to address this,” she says.

However, she says, 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 Comprehensive Health Assessment Program (CHAP). IHC has been advocating for the introduction of the 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.”

The Kōtātā Insight researchers say people with intellectual disability and their whānau show poorer outcomes across a wide range of social and economic indicators and for populations already at higher risk of disadvantage, intellectual disability acts as an additional risk factor.

Their report is the first effort at a comprehensive set of monitoring indicators that reports on the lives of people with intellectual disability.

The database can be used for further research and the code used to update the indicators in the future.

An app has been developed to allow disability advocates, academics, policy makers and others access to the results.

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The following actions would see a significant improvement in health for intellectually disabled people:

• Free annual health checks focused on preventative healthcare.

• Extra training for all doctors and nurses on intellectual disability rights and reasonable accommodations.

• Funding for carers and others to be part of the care team if an intellectually disabled person is in hospital.

• Preventative and screening programmes in areas such as cervical, breast and bowel cancer.

o Improve health support with Easy Read and video resources.

o Teach people about health and how to speak up about their health.

o Get medical centres to develop policies to improve the health of intellectually disabled people.

• Have an intellectual disability marker in health records and collect, analyse and release separate 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

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