New Zealand: Criteria for disability support services

People with ME/CFS in Aotearoa have been unable to access Whaikaha-funded support services. I'd like to understand exactly why that is - where is the document or definition that excludes people disabled by ME/CFS from this care?

Ministry of Disabled People (Whaikaha)
https://www.whaikaha.govt.nz/assessments-and-funding/how-to-access-support/

Many people with ME/CFS would qualify as having a physical, intellectual or sensory disability (or a combination of these) which is likely to continue for at least six month and having a need for ongoing support to live independently. So, what's the problem?

And then there's the Ministry of Health, who pick up most of the rest (offering a generally lower quality of care - and that's the bucket ME is in), other than the people whose disability is the result of an injury (they get high quality support from ACC).

 

To work out where the restriction is coming from when it comes to the delivery of Whaikaha disability support services, one place to look is the contracts between Whaikaha and the service delivery organisations. Fortunately these contracts are online:
https://www.whaikaha.govt.nz/for-se...nd-service-specifications/#contract-framework

Under the Tier one Service Specification, there's a lot of good words about disabled people being equal citizens and being treated with dignity and respect. Here's the eligibility specification:

So, I'm not even sure that we need to get into whether ME/CFS is a neurological condition. I would have thought plenty of people with ME/CFS would fit the definition of having been assessed with a physical, intellectual or sensory disability that is likely to continue for 6 months and limits their ability to function independently and requires ongoing support. So, I don't think this is where the block is.

 

(It's not just ME/CFS, or Long covid, that seems to be excluded of course. I think people with schizophrenia and their families for example have a horrendous time getting support. they are definitely excluded from being "disabled", because schizophrenia is regarded as a mental health condition. Talk about dualism...)

 

Under the National contracts heading, there's a contract that is used by Whaikaha with Disability Support Services that includes this clause on Eligibility"

So, a "Health and Disability Services Eligibility Direction"? That just says who is eligible to receive NZ health care services in general - it's what you would expect, a NZ citizen, a holder of various sorts of visas, and so on. It's not relevant to our question.

Maybe it's the Needs Assessment Co-ordination Services that are deciding that people can't be disabled by ME/CFS. ?

 

Needs Assessment Co-ordination Services

That doesn't seem to exclude someone substantially disabled by their ME/CFS. I'm still not yet finding anything that talks about specific neurological diseases being included or excluded, or gives any indication that the rules exclude people with ME/CFS. I've contacted a local service provider to see if they will tell me how they know what the eligibility rules are.

Of course, the Needs Assessors might not recognise the disability that ME/CFS causes, but that's a bit of a different problem.

 

The thing is, ANZMES has been asking for ME/CFS to be classified as a disability. They had the petition, but, even though I signed it, I was not clear then or even now about what they specifically want to change.

If we know exactly what guidance or other document is causing ME/CFS to be excluded from being a disability, then we are closer to being able to know what we need to ask for in order to change things.

 

Presumably there will be some kind of manual or training material for the people making assessments? If not in the public domain maybe need freedom of information request them.

 

I contacted a local needs assessment service to ask how they operationalised the criteria in the publicly available contracts with Whaikaha (Ministry of Disabled People). I was put on to their Operations Manager, who said that he had been in contact with Whaikaha, and they would be pleased to answer my question. I didn't really expect it to be such a difficult question to get an answer to.

I contacted Whaikaha, it's been a few days now, but no reply yet.

 

In reply to a followup, I received this on 14 Jun:

No useful information on how the criteria are operationalised yet.

 

An update: I've followed up again - the reply has been drafted and has gone to senior management for approval. I should get something this week. I'm surprised that it is this difficult to say who qualifies for Whaikaha support.