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

[RoseE]

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/

... Given that ANZMES has already sent out their letter template (for patients to add their details and send to the NZ Parliament) - which means a number of patients likely will send it to parliament - any petition this year should probably tie in with that, i.e. focus on access to home services. Plus ANZMES probably should be involved if only to drive a campaign to get as many supporting signatures as possible...

Some info from https://www.parliament.nz/en/get-involved/have-your-say/guide-for-petitions/ (bolding mine)

A petition is a document addressed to the House of Representatives (Parliament) asking it to take a specific action. The request might be about a public policy or law, or about a grievance. [...] The request must be about something Parliament can take action on - you cannot petition Parliament to make the sky green!

...

If your petition is about the same subject as a petition that has already been looked at and reported on by a select committee in the current Parliament, it usually will not be accepted. It might be accepted if significant new evidence is now available.

This is important from a strategic point of view. We don't want lots of people submitting lots of similar, weak petitions. Just one strong one. I wonder if it would be ok to do an annual petition, each time on a different problem related to ME, e.g. home services this year, research next year, medical education the year after, etc. A search of current ones on ME/CFS comes up blank. I'm assuming there have been no past petitions, does anyone know?

A petition can only be presented to the House once it has closed for signatures and an MP has agreed to present the petition to the House of Representatives.

What happens after my petition has been presented?

1. Announcement of petition

After your petition has been presented, it will be announced in the House at the beginning of the next sitting day. Your petition will be put on the Petitions page of the Parliament website.

1. Select Committee consideration of petition

The Clerk of the House will send your petition to a relevant select committee to consider your request in detail. A select committee is a group of MPs with a focus on a specific subject. They may contact you to ask you to make a submission on your petition.

See a list of Parliament’s select committees

1. Report on petition

Once the committee has examined and discussed your petition, it will report back to Parliament. This is the last stage of the petitioning process. The report may contain recommendations. If the recommendations are to the Government, the Government needs to respond to the recommendations within a certain period.

A quick look at some current petitions on other topics shows they are all very short and to the point, just a few sentences. The real work looks likely to be later if asked to make a submission.

 

[Daisybell]

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.

 

[RoseE]

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/

a voluntary network for the purposes of upholding established national standards, training, promotion and lobbying processes.

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

1. Screening form
   https://www.healthpoint.co.nz/download,306059.do
   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/

The New Zealand Disability Strategy will guide the work of government agencies on disability issues from 2016 to 2026.

The vision of the New Zealand Disability Strategy is:

• New Zealand is a non-disabling society - a place where disabled people have an equal opportunity to achieve their goals and aspirations, and all of New Zealand works together to make this happen.

 

[RoseE]

Eligibility criteria for DSS
4. ??? I haven't been able to find the official criteria document yet.

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

1. DEFINITIONS
Disabled person /person with disability
NASC should ensure services are provided only to those disabled people who are eligible to receive them, as required by the Guide to Eligibility for Publicly Funded Health and Disability Services in New Zealand. For the purposes of this service specification a person with a disability is someone who has been identified as having a physical, intellectual, sensory disability (or a combination of these) which is likely to continue for a minimum of six months and result in a reduction of independent function to the extent that ongoing support is required.

and

3. SERVICE USERS

3.1 Inclusions
People eligible according to the Guide to Eligibility for Publicly Funded Health and Disability Services in New Zealand who have been assessed as having a physical, intellectual or sensory disability (or combination of these) that is likely to continue for a minimum of six months; result in reduction of independent function; and require ongoing support[1]. People with these disabilities constitute the Ministry’s main client group, which largely consists of people aged under 65, many of whom have lifelong impairments.

People with physical, intellectual or sensory disability that co-exists with a personal health condition, mental health condition and/or injury, in relation to their disability support needs.

The NASC will consult with the Ministry for prior agreement in relation to people under 65 whose needs may have historically been recognised as disability-related within the parameters of the definition of disability.

3.2 Exclusions

• People who are covered under the Injury, Prevention, Rehabilitation and Compensation Act 2001. ACC has been responsible since 1974 for funding support services for people whose disability is caused by injury or accident[2].
• People aged 65 years and over who do not have a long term impairment (i.e physical, sensory, intellectual or cognitive disability that was acquired before the age of 65 years)
• People aged 65 years and over with a long term impairment who have been Ministry funded but who have been clinically assessed by a DHB or needs assessor as requiring age related residential care.
• People aged 50-64 years who have been assessed by a DHB or DHB needs assessor as "close in interest" to persons aged 65 years and over and whose needs would be best met by DHB integrated health and disability services.
• People who require an assessment solely as a result of a mental health need or addiction condition. These assessments are contracted for by the DHB through Mental Health Assessment Services or Community Mental Health teams.
• People who require assessment as a result of a personal health need. A personal health need is defined as when a person’s level of independent function is reduced by a condition that requires ongoing supervision by a health professional.

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

 

[Ravn]

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

The Ministry funds a range of Disability Support Services.
These 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 6 months
• limits their ability to function independently, to the extent that ongoing support is required.
  

These are mainly younger people under the age of 65 years.

The Ministry will also fund DSS 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.
  

Your NASC will be able to clarify if these apply to you.
If you have psychiatric or age-related support needs, your local DHB can help.

Who can’t get Ministry-funded support services?
The Ministry of Health 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.
  

Disability support services are also not funded for most people with impairments such as paraplegia and brain injury caused by accident or injury. ACC has been responsible for funding these support services since 1974. Go to the ACC website to find out more.

In most cases, district health boards fund disability support services for older people, including people with disability aged 65 and over assessed as requiring aged residential care, and those with mental health needs.

 

[Daisybell]

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

 

[RoseE]

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/

 

[Daisybell]

@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.

 

[Ravn]

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.

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:

If you imagined the ideal health and disability system for New Zealand in 2030, how would people’s experiences differ from today?