Maori Council says whanau and Maori living with a disability left behind - needs to change
Wherever I get around the country I hear some horrific and sad stories when it comes to your people and whanau who are living with a disability or someone who has one. And, to be honest, it’s not just Maori, it’s many New Zealanders. Māori had a higher disability rate than non-Māori, regardless of age, in 2013. Older people had higher disability rates generally. Data from the Ministry of Health shows that the self-reported prevalence of diabetes among Māori was about twice that of non-Māori in 2013/14. It also shows that there are much higher disparities between Māori and non-Māori for diabetes complications. As a direct result Lower limb amputation is another complication of diabetes. Similarly, rates of lower limb amputation with concurrent diabetes for Māori were over 3 times that of non-Māori in 2012–14. Therefore, among people with diabetes, lower limb amputations among Māori can be estimated as 1.7 times that of non-Māori. And yet the question has always remained about what more could have been done in terms of prevention which in turn – if we get this right then why would we not also reduce the cost to the health system over all?
Then there are our people living with an intellectual disability – those who may have the body of a fifty-year-old but the mind of a child. Just last week I met with a group of intellectually disabled Maori ranging in age from 50 to 60. We yarned about fun stuff and what was happening in their day, but I was always mindful of the fact they had younger minders and were constantly referencing whanau members who had obviously now passed. The question is who is caring for these people – are the right models of care in place, are they still involved in a whanau approach to care as opposed to the current system that may not be fit for purpose? And then there is the growing population of Maori, and all New Zealanders, who are suffering from dementia and Alzheimer’s. The thing about these Kaupapa Inquiries is it brings to the fore the stories of those living the journey around disabilities from the individual to the whanau and it provides all of us with the insight into what more needs to be done to build a better model, a better system – one I would argue needs to be Maori led and designed for Maori by Maori.
Then of course there is the system that does more to exclude the very people who care for those living with a disability, intellectual and physical; I am of course talking about the army of whanau members and carers out there. Several weeks ago, I sat down with a whanau in the Bay of Plenty.
The husband has been incapacitated at an early age due to a stroke. After being released from hospital the time it took to ensure that was adequate support for him didn’t kick in until month six from release. The house wasn’t set up to support his needs from the shower to the bedroom and by this stage the family had a hit a brick wall with Government agencies – at last count they were dealing with around six and each of those were not always in touch with the other. The situation in the home fell down to the family as first carers but this also then meant juggling everything from work and other responsibilities – in “Mere’s” words “It was like we needed help but there was no-one there but ourselves and we finding it hard to cope just with the basics. I had to quit work, so our money hadn’t just halved because my husband had lost his ability to work; but then I had to give up the other half of our income”. Two years on they are still fighting for support. Then there is another example from Auckland where a whanau has just about given up on support for them just to get a bathroom modified; “Its been nine months” they tell me just to get a hand rail installed and some basic modifications to their bathroom.
The loss of income, the lack of knowledge of the system and how to navigate it, the challenge of getting someone to listen from a Government agency or department is made worse by certain agencies knowing how and when to engage. The rates of Maori engaging with ACC, for example, may have more to do with those throwing their hands in the air and giving up therefore not getting access to what they may be entitled to. One Maori whanau said they felt stereotyped by ACC when reaching out for help as if they were running a “scam”.
So what does some of the data tell us?
Māori had a higher disability rate than non-Māori, regardless of age, in 2013. Older people had higher disability rates generally.
The heart failure mortality rate among Māori was more than twice as high as that of non-Māori), and Māori were about 4 times as likely as non-Māori to be hospitalized for heart failure. The disparity was greater for females: the heart failure hospitalization rate among Māori females was about 4.5 times as high as that among non-Māori females
the most common cancers registered for Māori females over this time period were breast cancer, lung cancer, colorectal cancer, uterine cancer and cervical cancer. Figure 9 shows that the leading causes of cancer death for Māori females were lung cancer, breast cancer, colorectal cancer, stomach cancer and uterine cancer.
The most common cancer registration sites for Māori males were prostate cancer, lung cancer, colorectal cancer, liver cancer and stomach cancer (Figure 10). The leading causes of cancer mortality for Māori males were lung cancer, colorectal cancer, prostate cancer, liver cancer and stomach cancer.
The chronic obstructive pulmonary disease (COPD) mortality rate among Māori aged 45 and over in 2010–12 was almost 3 times that of non-Māori in the same age group
The disparity was greater for females: Māori females had a COPD mortality rate almost 3.5 times that of non-Māori females
Data from the Ministry of Health shows that the self-reported prevalence of diabetes [2] among Māori was about twice that of non-Māori in 2013/14. It also shows that there are much higher disparities between Māori and non-Māori for diabetes complications.
Renal failure is one of the complications of diabetes. Rates of renal failure with concurrent diabetes for Māori aged 15 and over were more than 5 times that of nonMāori at the same age group in 2012–14. While some of this difference can be attributed to the higher prevalence of diabetes among Māori, the disproportionately higher rate suggests that Māori with diabetes are more likely to have renal failure than non-Māori with diabetes. The extent of the disparity can be estimated by dividing the relative risk of renal failure by the relative risk of prevalence (i.e., 5.55 ÷ 1.99), which suggests that among people with diabetes, Māori are 2.8 times as likely as non-Māori to have renal failure.
Lower limb amputation is another complication of diabetes. Similarly, rates of lower limb amputation with concurrent diabetes for Māori were over 3 times that of non-Māori in 2012–14. Therefore, among people with diabetes, lower limb amputations among Māori can be estimated as 1.7 times that of non-Māori (i.e., 3.44 ÷ 1.99).
What are some of the solutions?