NZ Petition: Include ME/CFS in DSS (Disability Support Services) eligibility criteria

A conversation in the 'News from New Zealand and the Pacific Islands' thread led to the idea that 'we'* work together on ensuring that people with ME and CFS have access to Disability Support Services (DSS). These conditions are not currently included in the eligibility criteria for DSS, but instead they fall under Long Term Support - Chronic Health Conditions funding (LTS-CHC) which sits with the underfunded District Health Boards.

'we'* - meaning anyone interested here in s4me.info and hopefully some from the facebook group M.E. Awareness NZ.

Initial convo - https://s4me.info/threads/news-from-new-zealand-and-the-pacific-islands.4230/page-5#post-156501

Moving it here into it's own thread to allow an ongoing conversation and collaboration to occur.

One idea was to use the online Parliament Petition service https://www.parliament.nz/en/pb/petitions/

...

 

I think that it will be a challenge to get the MoH to see ME as something causing disability. Having said that, I do think this is a very good place to start. I’ve always thought the distinction between long-term conditioned and disability was a bit spurious. MS falls under disability support, but RA does not.... and someone with diabetes-related complications can be very disabled...

But looking at the documentation online - I’ve copied the relevant para below - we are certainly disabled according to their own definition.

https://www.health.govt.nz/system/f...health-independence-report-2017-jul18-v2.docx
The New Zealand Disability Survey (Statistics New Zealand2014) was last completed in 2013. It is an important source of information about the prevalence of disability – where disability is defined as an impairment that has a long-term, limiting effect on a person’s ability to carry out day-to-day activities. ‘Long-term’ is defined as six months or longer. ‘Limiting effect’ means a restriction on or lack of ability to perform.

 

Sharing a couple of links...

Disability Support Services (DSS) info

1. Landing page that discusses the range of support services
   https://www.health.govt.nz/your-health/services-and-support/disability-services
   
   
2. How the MoH runs the DS
   https://www.health.govt.nz/our-work/disability-services
   
   
3. Am I eligible? page
   https://www.health.govt.nz/your-hea...m-i-eligible-ministry-funded-support-services
   
   
4. Eligibility criteria for DSS
   ??? I haven't been able to find the official criteria document yet.
   
   
5. Local delivery of DSS is via 'Needs Assessment and Service Coordination' services (NASC)
   https://www.health.govt.nz/your-hea...-assessment-and-service-coordination-services
   e.g. Lifelinks (Chch), Capital Support (Wgtn)
   
   
6. There is a disability information and advisory service to help you find your local NASC, support groups and to give more info
   https://www.health.govt.nz/your-hea...port/disability-information-advisory-services
   note: Multiple Sclerosis Society NZ is there, but not ANZMES.
   
   
7. Disability orgs (public, govt, charities)
   https://www.health.govt.nz/your-hea...support/disability-organisations-and-websites
   
   
8. Getting financial, equipment & other support
   https://firstport.co.nz/home/about-this-site/

federation of disability information centres
http://www.nzfdic.org.nz/

Long Term Support - Chronic Health Conditions funding (LTS-CHC)

1. Screening form
   https://www.healthpoint.co.nz/download,306059.do
   
2. TAS, and independent org, provides services to the National Resolution Panel that makes decisions on complex applications.
   https://tas.health.nz/dhb-programmes-and-contracts/long-term-support-chronic-health-conditions/

New Zealand Disability Strategy
Under Office for Disability Issues - https://www.odi.govt.nz/nz-disability-strategy/

 

Perhaps this is it?
https://www.health.govt.nz/our-work...ces/contracts-and-service-specifications#NASC

and

For Long Term support
Also found

1. National Expectations document 2017
   https://www.health.govt.nz/our-work...ces/contracts-and-service-specifications#NASC
   
   
2. Needs Assessment and Service Coordination Services for People with Chronic Health Conditions - Tier Two - Service Specification (2015)
   On this page... https://nsfl.health.govt.nz/service...ons/community-health-transitional-and-support

 

I have no personal experience with DSS, so some questions:

• Are you saying they have more money than the DHBs to provide services and therefore more likely to approve requests?
• Do they provide a different or wider range of services?
• Do you have any other reasons for thinking we'd be better off under DSS than DHB?

Looking at the website below we need to make the argument that ME should be added to the list of "some neurological conditions" (I don't know what conditions the list includes) and not to the list of "personal health conditions such as diabetes or asthma".

https://www.health.govt.nz/your-hea...m-i-eligible-ministry-funded-support-services

 

in my experience from working in DHBs, the funding for chronic health condition support is much more stretched than for disability support. I guess just because each DHB is always trying to save dollars. My gut feeling is that we have zero hope of getting ME seen as a disability - sorry if that seems negative. I think perhaps we should be pushing for ME to be seen as a chronic health condition that needs support. I don’t expect the DHBs think of it as something where people need help with personal care etc....

If we can’t change the perception of ME as an illness that tends to resolve over time and doesn’t have a significant impact on people’s lives, then we have no hope of changing the support on offer.....

https://nsfl.health.govt.nz/system/...upportchronichealthconditionsjanuary2015.docx

 

Agreed @Ravn and @Daisybell - we do need to think if the current idea for this petition is the right target.

I might park this thread and start another one, about how do we support & endorse the ANZMES MP letter template in a more targeted way? Especially as we would like to do that within one month - i.e. around May 12th, as that is ANZMES target.

RE DSS /LTS...
History for me, when trying to support my daughter...

Her GP (of a couple of years ago) had no awareness of the impact of ME on my daughters day to day existence. e.g. I need to help her shower; a wheelchair enables longer outings; a cane helps; etc
Because we didn't have her GPs support, we couldn't access the Long Term Support available thru the DHB. i.e. no willingness to do a referral.

We heard that some people had been assessed via their local DS service, so we approached the organisation that provides DSS in our area. The service mentions you can self-refer. They came back with "the Ministry of Health guidelines do not allow ME/CFS sufferers to be considered under Disability. They must be considered under Health.”

I confirmed this by writing to MOH, who wrote... “ME/Chronic Fatigue is not a diagnosis which meets the DSS eligibility criteria. Long Term Support - Chronic Health Conditions funding (LTS-CHC) sits with the District Health Boards, and those deemed eligible to access LTS-CHC funding may get a range of supports from the DHB."

After sharing info with a new GP and her own reading, she realised the need for assessment, and we were put on the referral list. After a wait of 6 months, we got a visit from a OT that knew absolutely nothing (in my opinion) about ME/CFS and was of limited help. We asked for funding for a wheelchair and were declined thru LTS (they don't fund wheelchairs). Note: I understand that the DS Services must assess within a certain timeframe. We have since received a bit more support thru LTS ( a peer support person visits weekly) - I think mainly because I had a bit of a breakdown.

We have recently obtained a letter from the GP in support of a wheelchair being provided. And we are taking that to WINZ. Not sure how that will go. But ideally the assessment for what wheelchair is suitable, should be done by an OT, not me.
​

From my understanding, the service requirements for a Disability Support Service are more stringent than for the District Health Boards that provide the Long Term Support. Both in time to respond to the referral and the services provided. The DS people seem to be better trained /aware - but I have no formal info on that (only isolated experience within my circles).

It seems to me, that DSS eligibility would be of more help to us. BUT I am aware that some with ME may not like being categorized as 'disabled'.

Another consideration is that the govt is doing a lot of thinking and surveying around disability at the moment. So things may shift naturally to a better service, regardless of whether we come under LTS or DSS.
Refer https://www.odi.govt.nz/whats-happening/read-the-governments-report-to-the-un-disability-committee/

 

@RoseE - I totally agree that DSS would be more help... I’m sorry you had such difficulty accessing LTS and that getting a wheelchair is so hard. Can your GP refer back to OT directly for you?
I personally think that what is needed is for the distinction between disability and chronic health condition to be removed. People in both have needs that are often overlapping, and merging service would be more streamlined and fairer.

I still think our focus currently should be on the recognition that ME is a chronic, often progressive, condition which significantly limits us in our daily activity. And to point out that stats on employment (from overseas - as I guess we have no local stats) show that we struggle to work at any level and a great deal of people live in poverty and hardship as a result.

 

Great minds think alike . Currently working on my submission for the Health and Disability System Review (closes 31/5/19) and put in exactly that.

S4ME post here: https://s4me.info/threads/news-from-new-zealand-and-the-pacific-islands.4230/page-4#post-142495

Access review here: https://systemreview.citizenspace.com/review/health-and-disability-system-review-plain-english/

There's fun to be had with question 2: