Back in June, Hilary Stace contributed a post on Public Address about the miserable existence of Ashley Peacock and the drive to have him released into community based care so he can live a more ordinary life.
The last comment was from Sacha about a month ago:
Here’s how the whole system operates – now they want to build a separate ‘cottage’ on the grounds of the same locked-up facility, rather than just transfer Ashley to a community setting as they have been ordered to. Arseholes.
What is the hold up here? Do these people not have a plan?
Do they not have a set of guidelines for facilitating the transition of a person with a disability from a far less than ideal living situation to one more conducive to life? A set of guidelines to assist in assessing and allocating sufficient funded support to maintain health and safety, and sustain a living situation that respects his rights as a human being?
Because, as many of us know, the Misery of Health has more Policy, Plan, Guideline and Service Specification documents than it (or anyone else) knows what to do with.
So why not one to aid in the release of Ashley, and for others whose support needs are in the High and Very High categories who desire to live in a home of their own?
Well folks ... they do.
A few days ago, a Friend sent me a document that was sent to her by the Mystery of Health in response to her OIA request asking for information about high cost packages of home based care.
For the innocent, the Miserly of Health: Disability Support Services has a great reluctance to fund for any care for those with disabilities, especially if the person with the disability desires to live an “ordinary life” in their own home.
Warehousing disabled people in residential care facilities is much easier to organise and usually more cost effective, although this type of care has well documented hazards.
The Miserly claims to limit the spend on individual home and community support service packages to no more than the cost of the same level of care in a residential setting. This is somewhere between $55K and $80K per annum.
My Friend was given a list of some 50 cases where the Ministry has funded considerably more than the cost of residential care. All are over the $100,000 mark, and one is in the $350,000-400,000 band.
And, tacked on to the end of a largish bundle of documents, was a photocopy of ...
Ooh! I thought, optimistically, they have actually got their act together and set in place some outside -of -the -box instructions to the hidebound NASCs!
(It should be noted that this particular document seems to be only available through the NASCA member login.)
And the Guideline does get off to a rollickingly good start...
... seeking to provide NASCs with a "principles based" approach when considering the approval of high cost support packages for disabled people who want to remain in their homes in the community.
The approach is based on the premise that each individual is unique and has a specific set of circumstances which drive their determined support need. This means that blanket rules are not appropriate to apply universally, and each case needs to be considered independently around each individual's circumstances.
So far so good ... and it gets even better!
With increased focus on choice control and flexibility for disabled people there is a growing number of clients deciding to remain in the community as opposed to entering residential services. [Yes!!! There in black and white!!!] A number of people have exceptionally high support needs with an associated risk and therefore requiring 1:1 support, 24/7 to ensure their safety.
There’s a whole paragraph that speaks to the NZ Disability Strategy, Enabling Good Lives and the New Model, and acknowledges that ...
This increasing trend to access high levels of support in their own homes is related to the well established international trend... [Whew! Aotearoa isn’t blazing a trail here ...]
And just when I’m thinking that they have finally got it ... the old Miserly of Health narrative inserts itself...
There is increasing need to apply a logical and sympathetic approach to enabling people to remain in their own home, in the face of increasing costs. While DSS seeks to achieve an "ordinary" life, with choice and control for disabled people, the need to manage within fiscal constraints prevails.
And over the page ... back to their old selves ...
The following competing tensions currently exist:
• Right of individual choice and strategic directions (local, national and international trends).
• Ministry policy is limiting due to need for financial constraint.
• There are no formal Guidelines for decision making outside policy or historical limits
On this basis a framework for support packages in the home is required. An equitable approach needs to be established that takes into account individual circumstances and needs, whilst balancing these against affordability and sustainability.
And it is downhill from there on, with their “principles” being based pretty much on the same criteria as any other Home and Community Support package. Heavy emphasis is placed on these being less than the cost of residential care, and states that all packages must consider “cost sharing (such as flatmates)”, which is simply another form of residential care only with fewer other residents. (The use of capitals is their emphasis, not mine.)
Service co ordinations need to be based on ESSENTIAL NEEDS only.
• MOH does not fund lifestyle choice (ie where natural support would otherwise fill the need) - for example when the family refuse other government funded supports (ie rehab/respite or MSD funded day services).
They do not define “natural supports”, and this new term “lifestyle choice” has got me flummoxed.
It pops up again over the page...
• NASC must use the ICARe process to determine the need for direct physical support (hands on support needs) at all times ensuring that natural supports (not considering lifestyle choices such as full time work) are included in the support plan. Funding will be based on assessed support hours and will be based on core staff costs.
I have tried and failed to fit “lifestyle choice” and “full time work” into a disability context, either from the point of view of the person with the disability working full time or the “natural” support person working fulltime. As if either scenario constitutes a “lifestyle choice.
The friends I’ve talked this over with, some of whom are highly educated, don’t get it. It doesn’t seem to make sense except to provide another incomprehensible way out of allocating appropriate supports.
This document was posted on the NASCA website in March 2014. If there is a more recent version, a more refined version, I would hope that the Ministry would have sent that to my Friend rather than this sorry effort.
It is basically telling the NASCs to carry on doing what they have been doing and make the lives of disabled New Zealanders with high and very high support needs as miserable as possible while pretending to be doing the opposite.
No wonder poor Ashley still languishes.
I may have read this all wrong.
I incline towards extreme cynicism when it comes to these initiatives from the Mystery of Health, and my opinion can’t really be trusted.
I don’t trust the Ministry, and I don’t trust the NASCs.
And this is not just about Ashley.
This is also about the approximately 20% of people with disabilities who have been assessed as having high and very high support needs.
Help, hands on help, is a necessity, and I was told recently by a Ministry of Health staffer who has direct involvement with the NASCs that they are now doing work on how best to meet the needs of this group.
If this document is the best the Miserly can offer the NASCs in the way of advice to meet the needs of this group in a safe and respectful manner, then God help them.
As the full time carer of a family member with measured very high needs…this scares me shitless.
And others in my position will understand why.
You can download and read the full NASC guidelines here. Please share your own interpretations.