In the community....
Pitopito kōrero from the Awhi whānau for the Awhi whānau
Kia ora Awhi whānau. We hope you’re settling into the school holidays OK. Here’s a little round-up of what’s going on in our community right now.
On 2 August, MPs debated the Government’s 'Accessibility for New Zealanders Bill'. The Bill passed the First Reading stage and was referred to the Social Services and Community Select Committee. A group of nine MPs on the Select Committee will examine the Bill in more detail and hear submissions from the public. Submissions are open now and close on 7 November 2022.
Access Matters Aotearoa has an amazing and easy form to make submissions. Please click through and get involved in the process.
Many disabled peoples' groups don't believe this legislation will deliver real progress or improvements, because the Government Bill:
has no means of enforcement
only applies to central government, and is NOT applicable to the private sector
has no standards
has no regulator
has no dispute-resolution process
has no obligations or timeframe
only creates a new advisory committee - which does not require an Act of Parliament - and will only perpetuate the slow and fragmented system currently in place
relies on the values, priorities and decisions of future Ministers.
Click here for more info and to make a submission.
More info: UN committee 'concerned' NZ Government ignoring disability rights' advice.
People living with rare health disorders are being asked to take part in a nationwide survey. The goal is to find out how many people are living with these disorders, and what they are.
Rare Disorders NZ generally defines a disease or disorder as rare when it affects less than 1 in 2000 people, following international definitions.
Our friends at the University of Auckland have reached out about a research project that's seeking to create a resource for parents/caregivers/whānau who are supporting a young person who has engaged in self-harm.
The team are now recruiting for our community-based co-design hui with parents/whānau/caregivers to develop an information resource. Find out more here.
Diabetes NZ has a short survey for parents and cargivers of diabetic children and for diabetics to find out how the language used to talk about diabetes impacts your emotional & mental wellbeing. Do the survey here.
There is a presentation on Education Legal Issues for parents of disabled children on 19 October. Please note the following is not Awhi wording:
This presentation is brought to you by Nan Jensen and is suitable for Special Needs parents. It includes information on: Special Education, school rules and discipline, Is it legal? What can the school expect? Is it reasonable? What can you expect?
Families have often voiced questions regarding disability in the education sector. Nan Jensen, who has been running our Planning for Adulthood – Trust and Welfare Guardianship seminars and Legal Clinics, specializes in Disability Law and is now offering to run a seminar on legal issues in education. Questions on section 37 and section 47 appeals, stand downs and many more will be covered in this seminar.
Disability Connect regularly runs Education Legal seminars. Our speaker at this seminar is Nan Jensen (Barrister and Solicitor) from QuinLaw.
Wednesday 19th October 2022 12-2:15pm – Book here Zoom Only
Cost: Per Family – $20 Professionals – $50 (working in disability sector)
Payment options are on our website and will be sent by email when booking. Please do not hesitate to contact us if you find it difficult to come up with the fees. We are determined that cost will not be a barrier to families attending these popular and valuable seminars. RSVP is essential: 09 636 0351 or admin@disabilityconnect.org.nz Click here for pdf flier.
The New Zealand Down Syndrome Association (NZDSA) is running events all week for their conference - they’re on Zoom. They include events like: What your other kids without Down syndrome are thinking, The impact of speech and language therapy on children with Down syndrome, and Inclusion – So every child belongs & flourishes in education.
In the news
Health and Disability Commission facing logjam of complaints
Some schools discourage enrolments of children with disabilities - Education Review Office
It has been a devastating time for our families with Cystic Fibrosis with the news Trikafta is unlikely to be funded by Pharmac.
'The community is devastated': Cystic fibrosis patients head overseas for treatment
Whakatāne parents pay $396K per year for Trikafta - $52K is GST
Bay of Plenty families disappointed as Trikafta unlikely to be funded
We send our love to those families.
We also send our love to Malcolm Mulholland and his whānau. Malcolm is a tireless campaigner for our communities. Many of you will know him well from his work with Patient Voice particularly around Pharmac budgets.
Just nine months after losing his beloved wife Wiki to breast cancer, Malcolm was diagnosed with an aggressive prostate cancer.
A Givealittle has been set up to support Malcolm and his wonderful family.
Awhi resources:
How can you strengthen bonds between disabled and non-disabled siblings?
Five tips to help you advocate for your neurodivergent child at school.
Sending you love and strength for the rest of the school holidays and lots of awhi.
Please feel free to get in touch hello@awhingamatua.org.nz or just reply to this email.
Arohanui, Emily & the Awhi team