Posts by Hilary Stace
Last ←Newer Page 1 2 3 4 5 Older→ First
-
Thank you Lesley. I am gratified by the responses to this post and how the concept of Chronic Sorrow resonates with many peopole. Taking the risk to show a bit of vulnerability has not resulted in the scorn I sort of expected.
-
Hard News: Dirty Politics, in reply to Alfie,
This Dirty Politics story keeps getting bigger and weirder. 200,000+ page views for this thread too.
-
Thank you Erin and Martin for your perspectives.
-
Access: It’s just a bout of Chronic Sorrow, in reply to Sacha,
Good to have that reminder, Sacha.
There has been some useful and informative material from a variety of authors posted on Access over the last year, and great discussion. Thanks to Russell for setting it all up and to everyone for contributing. Must be about time for a first birthday celebration.
-
I've been having a bit of discussion about 'inspiration porn'. It is to do the viewer having stereotypical assumptions about disability as an individual thing that people can 'overcome', and not about the viewer having to challenge their own practices or attitudes.
Stella Young expressed it best in this TEDx talk
http://www.ted.com/talks/stella_young_i_m_not_your_inspiration_thank_you_very_much/transcript?language=en -
Access: It’s just a bout of Chronic Sorrow, in reply to Bart Janssen,
Thank you Bart. Perhaps it could be 'lucky enough to not have to deal with it ... at the moment'.
-
Access: It’s just a bout of Chronic Sorrow, in reply to Rosemary McDonald,
But you know what it is like to be on the wrong side of the front line
-
I have a friend whose high needs autistic daughter is soon to leave school. There are no providers locally for her for any suitable day programmes and no providers keen to provide suitable accommodation, considering she would need 24/7 care (literarily 24 hours as sleep is minimal and night time destruction common) and any other flatmates would have to be very carefully considered. The only thing suggested is that the mother moves out and a provider uses the family home as the residence for the disabled young adult (although no provider has actually offered to do this).
Leaving school only means that the mother has about 8 more hours of care a day to do. Funded Family Care is not an option as the daughter in that scheme has to be the employer, and if an agent is brought in to do the employment responsibilities that takes a large amount of (non-existent) money.
There are several such high needs adults around NZ. I can just see a voucher being thrown at the ageing parent by the Government and saying, 'Sorry, it is solely your problem now'.
My friend is one of the wisest people I know for how the system works, doesn't work and could work better. She also helps numerous local people. An innovative disability support system would have her at the top level of expert advisors (along with Rosemary McDonald of course). Instead her life is one long struggle day by day, stuck at the mercy of government policy and whatever agencies might decide to provide whatever services they consider economically viable in her area.
-
Thank you Marc. I am dreading what the Budget will bring after that hint from Bill English. I fear it will be something that privatises social support and absolves the government of responsibility. Something along the lines of the British social development bonds perhaps or the voucher type system the Productivity Commission has just proposed. They assume there are a large number of wonderful services out there that anyone can choose from with a well funded voucher.And that everybody is keen to, in effect, be the employer of any support people. All we need is a bit of competitive tendering and everything will be wonderful.
Mostly, however, there are bits and pieces of services of variable quality, huge barriers in eligibility and cost. For the provider a large amount of time is required in tendering to provide the service, and for the person providing the care or service minimal remuneration and few protections.
Meanwhile there are huge gaps and tons of stress. Trouble is the people devising these amazing new systems have no understanding of what it is like on the front line, to be in constant stress, have no status and little money.
Enabling Good Lives, which is being cited as an example, is a great wrap around service. But so far it has only been used for a very small number of school leavers in Christchurch. It is successful because it is well resourced, very expensive, person intensive and with some very skilled facilitators who relationship build around the young disabled person.
I can guarantee that is not what will be rolled out in the Budget next month.
-
Thank you Adrian and look forward to hearing more about this project. There are many good people in the public service and good that you have found support.