New Zealand: Criteria for disability support services

Hutan

Hutan

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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/

Ministry funded disability support services are available to people who have a physical, intellectual or sensory disability (or a combination of these) which:
  • is likely to continue for at least six months
  • needs ongoing support to live independently, to the extent that ongoing support is required.
These services are mainly for people under the age of 65 years.

The Ministry will also fund disability support services for people with:
  • some neurological conditions that result in permanent disabilities
  • some developmental disabilities in children and young people, such as Autism
  • physical, intellectual or sensory disability that co-exists with a health condition and/or injury.
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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).
The Ministry [of Disabled People] does not generally fund disability support services for people with:
  • personal health conditions such as diabetes or asthma
  • mental health and addiction conditions such as schizophrenia, severe depression or long-term addiction to alcohol and drugs
  • conditions more commonly associated with ageing such as Alzheimer’s disease.
However, that doesn't mean there aren't other sources of support.

Disability support services for people with mental health needs or age-related needs are generally funded by the Ministry of Health external URL.

Disability support services for people with impairments such as paraplegia and brain injury caused by accident or injury are generally funded by ACC. Find out more about what they fund at ACC - What we cover external URL.
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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:

People able to access Disability Support Services are those who are eligible for New Zealand Public Health Services, according to the Guide to Eligibility for Publicly Funded Health and Disability Services in New Zealand available on the Ministry of Health Website, and who have been assessed with a physical, intellectual or sensory disability, including ASD (or a combination of these) which:

a) Is likely to continue for at least six months.
b) Limits their ability to function independently, to the extent that ongoing support is required.
Generally, Services funded by the Purchasing Agency are available to those under the age of 65 years. The major exception to this is Equipment Support Services funded by the Purchasing Agency, which are available to eligible disabled people of all ages.

The Purchasing Agency will also fund Services for people with:

a) Some neurological conditions that result in permanent disabilities.
b) Some developmental disabilities in children and young people, such as autism.
c) Physical, intellectual or sensory disability that co-exists with a health condition and/or injury.
Specific eligibility and access criteria to Services provided under this Agreement are defined as part of the attached Tier Two Service Specifications.

The Purchasing Agency generally does not fund Services for people whose primary diagnosis is for:

a) Personal health conditions such as diabetes or asthma.
b) Mental health and addiction conditions such as schizophrenia, severe depression or long-term addiction to alcohol and drugs.
c) Conditions more commonly associated with ageing such as Alzheimer’s disease.
Disability support services are also not funded for most people with impairments such as paraplegia and brain injury caused by accident or injury.
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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.
 
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(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"

Any individual who:
  1. is in need of the Services as determined by a DHB or DHB/Ministry of Health authorised Needs Assessment Co-ordination Service; and
  2. meets the essential eligibility criteria and other criteria, terms or conditions which, in accordance with the Health and Disability Services Eligibility Direction current at any time, or any other Crown Direction must be satisfied before that individual may receive any Services purchased by us.
The Minister will determine whether an individual is an Eligible Person if there is any dispute.

“Eligible People” has a corresponding meaning.
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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. ?
 
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Needs Assessment Co-ordination Services
Who can have one
A needs assessment supports 3 main groups of people to get help.
  • Anyone with a physical or intellectual impairment or disability that:
    • is likely to last for 6 months or more, and
    • means you need ongoing help to be independent.
  • Anyone over 65 who, because of health concerns or a disability, needs extra support with their day-to-day lives at home or in care.
  • Anyone who has been injured and is getting help to recover through the Accident Compensation Corporation (ACC). In this case, ACC first carries out its own Social Rehabilitation Assessment and only suggests a needs assessment if they think you need support that’s not related to your injury.
You can only get a needs assessment if you’re eligible to receive healthcare in New Zealand.
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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.
 
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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.
 
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.
 
I think that the issue will be that if ME is seen - as Diabetes is or heart failure - as a long-term health condition, then disability is not assumed. So the needs assessment service will just ‘opt out’ of the assessment on the grounds that you have a long-term health condition and not a disability! Even if you have lost a limb to diabetes, the issue I believe can still remain - which seems unbelievable in reality..
It’s a very grey area and lots of health conditions miss out.
 
Hutan said:
I contacted Whaikaha, it's been a few days now, but no reply yet.
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In reply to a followup, I received this on 14 Jun:

Kia ora ,
Please accept my sincere apologies for us not acknowledging our receipt of your correspondence sooner.
I can confirm that your query was received on 30 May 2023. It was then referred to our Operations and Policy teams on 31 May 2023 for a response.
I have followed up on the status of this response and will provide an update as soon as I hear back from them.
Ngā mihi
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No useful information on how the criteria are operationalised yet.
 
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