16.16

Hey team, I really hope you’ve enjoyed the coverage! I’ve tried to keep my commentary fresh, honest, and straight-talking.

It’s been a really interesting day, despite lacking the dialogue and discussion many of us were expecting.

Nonetheless, it’s been useful to have a summary of ways we can “speak up”, and I imagine many people have left considerably more empowered, with some really useful information in tow.

If you were at the conference, please leave your comments below – I’d love to hear what you thought of the day’s events!

Red

16.16

Health and Disability Commissioner is back up

Announcing the release of “Making it easy to put the Code into action” – a booklet giving guidelines and frameworks around the HDC process.

A second publication called “Making Communication Easy” – helpful, straightforward, practical solutions around communication difficulties. E.g. a guide to working with someone with a hearing impairment.

These sound really useful!

16.10

It’s important to get something in place, so that the courts don’t make these decisions for us. It’s as important for you as it is for those around you.

It’s up to us to ask for a more inclusive legal framework.

16.03

“The UN Convention guarantees that people with disabilities will not be removed from the decision-making process. Guarantees supported decision-making, not substituted decision-making.

It puts the power in the individual’s hands – you are able to choose who helps you make decisions, not the courts.”

15.56

Dr Huhana Hickey – Auckland Disability Law

Huhana has begun talking about ‘informed consent’; who is – and who is not – eligible to speak for you on your behalf if you are unable to provide informed consent.

Speaking about welfare guardians – court-appointed representatives of one who doesn’t have ‘legal capacity’, i.e. the ability to make decisions. It’s important that these guardians always act in your best interests, and don’t obtain any unfair pecuniary advantage. These guardians cannot be paid.

They also cannot make decisions around:
– Marriage or civil unions
– Adoption of children
– Cannot refuse consent to life-saving operations
– Cannot consent to brain surgery or medical experimentation

15.12

- AFTERNOON TEA -

15.10

Recent initiatives by the HRC:

– Making Complaints: A booklet guide for those who have experienced mental health issues
– Human Rights in NZ: A book highlighting key issues for disabled people in NZ

15.04

Ros Noonan – HRC

“We think it’s a critical time for the disability community.

First report on the implementation of the UN Convention on the ROPWD due March 2011. We’ll be holding hui from early next year, and want to hear about human rights issues facing disabled people.

Disability-related discrimination made up 30% of all HRC’s cases every year between 2005-09. This number is equal with race relations cases.

14.55

There’s been a bit of a mass exodus from the conference room. One participant quipped “I’d rather stick hot pins in my eyes”.

I really don’t mean to be so negative in my reports but I’ve become increasingly concerned by the lack of dialogue taking place. A lot of talking heads, a lot of sitting-in-a-hot-auditorium listening to people read pieces off their website. I had expected more collaboration, more discussion, more positivity really.

Perhaps I need coffee #4?

14.27

Zoe Griffiths – WINZ

“Work Matters – People Count”

She’s basically talking about “what WINZ does”. I’ll spare you the details, eh? ;D

14.22

Again, this is striking me as about 10 minutes past its use-by date. We could be using our time far more effectively!

14.12

The complaints process

– Work out what the main issue(s) are – quality, support levels, etc
– Who should I deal with first?
– Never be afraid to ask for help

“It is difficult to complain. You often feel like you can’t complain, due to the fear of retribution. Seek someone neutral: an advocate, friend, etc”

– Start at the “lowest point” of the complaints process and work up. So speak to your provider first. If you don’t start with the most obvious or immediate point, you’ll probably be constantly referred back down the chain.
– Think about the person who is receiving your complaint – be reasonable, provide as much information as possible.
– Providers have an obligation to be responsive to your complaint – and respond timely.

14.03

She’s pretty much just outlining the complaints process. Kinda dry, so will stop copying it down. If you’re interested, visit the HDC website

14.01

Dr Janice Wilson – Deputy Director-General, Population Health – MOH

“Understanding & Exercising Your Rights”

We expect our services to be safe, and have all the rights that are outlined in the code of rights.

There’s no general ‘right’ to access, but most services provided based on ‘needs’ and ‘ability to benefit’. Because funding is capped, services have to be targeted, and access prioritised. Therefore, often people with higher needs are prioritised over those with lesser.

Thus, no service access is ‘guaranteed’.

13.50

We’re now being presented with a DVD on fire safety. Might have to go get some fire alarms after this – scary stuff!

13.46

Big admission alert: “It is no longer right to allow people with disabilities to remain in buildings that may be on fire”.

“I say to the fire service that it is no longer right to leave someone with a disability in a stairwell”.

13.44

“We’ve recently put 6 of our firefighters on a NZ Sign Language Course”.

“We have a proactive group of 20 firefighters in Auckland who are well-educated on both big D and little d communities”

Now that’s cool, huh?!

They had 93 people turn up to their first disability-focused workshop (they expected 15-20).

OMG HE JUST SAID WHEELCHAIR-BOUND!! The whole crowd went “oooooh”, hahaha

13.41

At-risk groups to fire:

– Children
– Older adults
– Lower socio-economic
– Maori and Pacific people
– Disabled “and special needs”

Disability has come up on the radar particularly in the past 6 months. Traditionally, however, “the stats don’t show us there is a problem”.

13.36

NZ Fire Service Fire Safety Strategy for the Disability Community

I think this is gonna be a fairly sobering one folks! Fire safety is something I don’t think about nearly enough.

“By law we have to educate the community as to how to be safe if there is a fire, and how to respond appropriately.”

13-15 fire deaths a year – “we know we can get better”.

13.18

Okay back from lunch.

This is interesting – they’ve got an integrated dance performance by Touch Compass happening on the floor. So picture this – an auditorium with 200+ people in it, many of whom are sitting down, there’s a performance happening at floor level, not elevated at all.

Heaps of people are standing up to get a better look, which is kinda insulting to so many of us who don’t have that, er, flexibility ;P

Fairly bizarre though. I’ve left the room, since I can’t actually see anything :/

13.13

- LUNCH -

12.02

In 90 seconds, how can we encourage more political action rather than all the talk?

– Media (more stories – both horrible and good)
– Convert politicians – put them in services. Perhaps we could run a reality TV show called Politicians in Services!
– Support for John Key from the floor

11.58

Plans to fix training issues:

– Stable workforce. Attrition rate is too high.
– Caregiving certificate doesn’t cover people with high needs. Way beyond most support staff’s capability.
– Assisting community organisations to train their staff, make them more aware of disability issues
– Having a robust process around disputes/complaints resolution, without fear of retribution from your support staff (i.e. you can make a complaint and still get dressed the next day!)

11.48

Training of support staff was identified as a big issue facing the disability sector. We’re being asked to come up with ideas as to how to increase workers’ capacity. How can we – as consumers – train support staff to be better at their job?

11.45

There’s a list up the front of the room, featuring ‘issues most pressing to disabled people’. These include:

• Practitioners are not asking the right questions
• Disabled people not in charge of their support
• Lack of political action
• Increasing networks of friends – true, loyal friends, not paid
• Workers lacking in training and skills

We’re now voting on the most important issues.

11.42

Into Philip’s wild room of mayhem we go now, we’ve just been asked to introduce ourselves. Simultaneously. Good times.

Philip’s pimping his Peer Support Network – definitely worth checking out, www.dpsn.net.nz. It has blogs, online chats, discussion forums, aimed at people sharing and connecting around their experience.

11.32

Q: Isn’t it time to focus on the UN Convention – change language, focus on awareness?

A: DPA also talk about future direction – that’s the main part of what DPA does – what’s the perfect world?

And that’s it folks!

11.29

Q: How are DPA prioritising funding shortages across the sector?

A: Individualised Funding is now part of govt policy – so should increase with inflation. How do we influence policy? Put up good ideas. DPA can collectively pool individualised funding-related issues and lobby the govt accordingly.

“It’s not a good enough answer to say there’s not enough money”

11.22

DPA has been piloting self-advocacy workshops across the country, to help empower people to speak up.

Sorry folks, a few rather ambiguous questions from the floor. Seem to be semi-attacking DPA

11.15

“On the 20th of October 2010, a dedicated disability commissioner was announced. And on the same day, the Govt’s new special education policy was announced.

We have a huge collective voice – 680 million disabled people worldwide. There’s power in that.”

Barry’s opened up to questions from the floor.

11.10

Barry’s talking about DPA, and is introducing ‘Evan’ who also works with Barry at Renaissance.

“What is advocacy? What does it mean to speak up?”

It’s very hard to speak out when you have a disability, or are a family member of, because you’re so involved with the service. This is where organisations like DPA come in.

DPA has achieved a lot in the last 21 years. For example, teletext captioning was initiated by the DPA.

“The collective voice of the people is really important”.

11.07

– Alright folks, first focused session of the day!

“The collective voice of disabled people” w/Barry de Geest (amended from Ross Brereton). I’ll update you as conversations progress.

Barry’s being introduced. It’s almost his 50th birthday! Congrats big man!

10.18

Q (Francesca Holloway): What sorts of things can’t the Heath & Disability Commission be involved in?

A: Funding and access. So; if there’s enough funding for a service, or if there is limited access to it. However if someone is waiting for a service for which a referral has been made, that is inside the Commissioner’s jurisdiction.

Our focus is building strength and skills of consumers to build confidence to deal with matters that an advocate is unable to assist with. Advocates can certainly work as a mentor in these scenarios.

Q: What about retaliation or retribution from complaints?

A: ‘Right 10′ has a clause that says you should not be disadvantaged in any way by making a complaint. Many people don’t complain because of that fear. Apparently there’s a guide online which provides an outline to making complaints in ‘tricky’ situations.

09.56

Question time. Will let you know if anything interesting crops up.

09.55

I must admit, this feels like an advertisement for disability advocates. A 15 minute Powerpoint on “what we do”? Come on, this time could be put to much better use!

Oh they’ve put a fridge magnet in our conference bags. As a fellow attendee insightfully remarked:

“Fridge magnets. Not in braille, don’t worry” /sarcasm

09.51

“Providers are generally well-intended, but if something is not going well, an advocate can help consumers speak up and have their say”.

“Specialist programmes are held for Maori, and the deaf community”

(To their credit, this service sounds really valuable)

09.47

“Advocates have been visiting rest homes for the past 4 years, and disability homes for the last 3 years” (Is this the most appropriate method of reaching the disability community?)

“Advocates are now required to make at least 2 visits to 50% of residential facilities. Training is given to residential staff to foster an environment that makes it easy to speak up.”

Man I hate phrases like “disability homes”. So antiquated

09.43

Well that was interesting. Up now: - Judy Strid, Director of Advocacy – Health & Disability Advocacy Service -

Advocacy process very successful – 88% resolution rate after making a complaint. Over 5,500 complaints last year that advocates helped complainants resolve.

Advocates work alongside consumers as social change agents. They help to strengthen the consumer voice. They offer ‘speaking up’ programmes, education, and information.

09.36

“Sometimes in partnerships you don’t always agree, do you. But you don’t just go and divorce them, you try to work it out. In any relationship, you expect a bit of grief, you expect a bit of conflict. But you’re open to working things out.”

Sometimes you don’t have any choice for your service provider in NZ. For example, there’s only one place to get guide dogs. So sometimes it’s best to just get on with them. Kiwis are known for being nice”

(WHAT? Did she really just say “sometimes you don’t have any choice in service provision so it’s best to just get along and be nice”?! Wow)

08.31

Tania is using quite a bizarre analogy with William and Kate. She’s using a generic ‘relationship’ analogy, comparing “a good partnership” with marriage, but it’s a really bizarre narrative. There’s a big picture of them on the big screen, and Tania’s saying things like “I hope they have a common language. I hope they understand each other”. Kinda funny ;D.

08.29

– Tania Thomas, Deputy Commissioner, Disability –

Tania has begun talking about partnerships. Common goals, common aims.

“Our aim is for the consumer to get a good, safe, quality of service, and for consumers to have a real relationship with their service provider. To enable them to participate in the negotiation of this service.”

08.25

We give you our absolute assurance that the govt is listening. And we will act.

– That’s it for Nikki Kaye. I was wholly unconvinced. It pains me hearing about Govt representatives espousing lines like “empowering disabled people to live their lives” and “be in control over their support” when they’re currently restricting disabled people’s support.

08.22

Nikki Kaye encouraging the use of a “circle of friends” to enable disabled New Zealanders to live the lives they want.

People need to be in charge – or at least feel like they are in charge – of their support services.

All of these initiatives are because people have decided to speak up. We want to assure you today that the Govt, and the Minister, have been listening, with one common goal: making a real difference to the lives of disabled people.

08.16

We want “speaking up” to happen in every home, in every business, in every street.

Disabled people have the right to determine their own destiny, to be in charge of their own lives.

We believe in “taking on the disabling society”, and empowering disabled people to speak up when services aren’t working well for them.

08.14

“It’s time that the voice of disabled people were heard”.

“The govt’s first report on the implementation of the UN Convention on the Rights of People With Disabilities is currently out for review. We want comments from disabled people and their family, because it’s so important we get this right. We encourage you to go to the ODI website so your thoughts can be heard”.

08.10

Nikki Kaye is going to read some notes from Minister Turia’s speech. I’ll record some of them best I can

08.10

Well it’s begun! First news first: Tariana Turia is not here today, and instead we’ve got Nikki Kaye, who says Minister Turia has been “called into Wellington”. Disappointing. I’m not sure what makes Nikki Kaye qualified to speak in her place? Apparently she did some access-related work in London.