By John Pike
Where do you work?
Right here at Slaughterhaus – the graphic design company where CHAT 21 is produced.

John on cleaning duties at Lighthouse Brewery

How long have you worked here?
11 months.
How many hours each week?
6 hours.
What jobs do you do at your work?
I do the cleaning in the design studio and in Lighthouse Brewery next door.

John with his boss Dan and colleague Taylor.

How does it make you feel that you have a job?

It makes me feel good.

What do you like the most about your work?
Having a beer at Lighthouse Brewery after work on Friday and getting paid.
What don’t you really like about your work?
Cleaning the floor.
Do you have any other paid or volunteer jobs as well?
I help in the garden at Hohepa.
What would be your dream job?
Beer taster.

Down Syndrome International recently hosted a webinar to provide information and receive feedback about the first international guidelines for educating learners with Down syndrome.

If you missed the webinar but are interested in learning more, you can watch the webinar here.

Down Syndrome International (DSi) has developed these guidelines, using experts and existing research from around the world, to enable teachers to help their students with Down syndrome reach their full potential.

NZDSA National Executive Zandra Vaccarino thinks these guidelines are a game changer and will become an invaluable asset to New Zealand educators.

“We know that educators in New Zealand will welcome this resource as there is a great need for expert guidelines to  teach students with Down syndrome,” says Mrs Vaccarino.

“These new global guidelines have pulled together the best practices available around the world and will facilitate the realisation of the right of people with Down syndrome to an inclusive education and lifelong learning.”

New Zealander Bridget Snedden, Vice Chairperson of DSi says these guidelines have been developed to improve the availability and quality of education for people with Down syndrome around the world.

“We need to raise the expectations among educators of what young people with Down syndrome are capable of,” says Snedden who was closely involved in developing the guidelines.

To download the guidelines, please go to:

https://www.ds-int.org/Handlers/Download.ashx?IDMF=7a4a9546-287d-49c1-8573-888319d7310f 

Help us help them, to make ALL aspects of working at Downlights inclusive for all the Downlights Crew.
Downlights  are a big supporter of the NZDSA and they have launched a two-week fundraising campaign to buy specialised equipment that their Downlights Crew need, most importantly a wax melter with pouring wand.
The Downlights Project Wax Melter Fundraiser runs until Sunday 25 October via PledgeMe.
Right now some steps in the candle making process are too difficult for some of the Downlights Crew.
Downlights want to break down this barrier so ALL Downlights Crew have the opportunity to become a
chief candle maker like Jack and Nicki .
Downlights luxury soy candles is a NZ owned, certified social enterprise that employs young Kiwiswith Down syndrome, learning or intellectual disabilities and offers them meaningful employment opportunities while being paid the Living Wage.
Our beautifully fragranced products are of the highest quality, are GMO-free, lead and zinc free and are made with love in New Zealand by our Downlights Crew.
Downlights has been generously given some beautiful gifts to offer pledgers and we have created a few truly unique gifts ourselves so please join us, donate and spread the word to help take Downlights to even greater heights as a role model for workplace diversity and inclusion.

Some people can’t wear a face mask or covering because of a disability.

The NZDSA have designed these cards to help you in public situations.

The first side of the card is always the same and some people will be happy using it on its own.

Show it to quickly explain that you have a legal reasonable excuse not to wear a face mask.

If you want a non-verbal way to explain more you can double side your card with one of the extra messages. These can be printed or kept on your phone as photos.

YOU CAN PRINT THEM ALL OFF HERE.

 

by Coen Lammers

As life expectancy of people with Down syndrome is increasing, the number of them developing dementia is also growing.

The extra chromosome that causes the developmental and health issues associated with Down syndrome also carries the Alzheimer’s genes, so people with Down syndrome often develop dementia at an earlier age.

Research shows that about one third of people with Down syndrome over 50 years develop dementia, which is creating new questions and challenges for families, support workers and health services.

Two leading Australian scientists analysed all the available research around this subject which they published last year.

Currently in New Zealand, there is no coordinated effort from the health authorities to prepare the sector for the ageing population with Down syndrome, so people on the frontline are left to come up with their own solutions, in their own community.

Hohepa Canterbury in Christchurch provides residential care and other services for people with intellectual disabilities and may be the only organisation in the country with a dedicated dementia unit for people with Down syndrome.

General manager Arnah Trelease explains that people with Down syndrome and dementia need specific care and staff need specialist training, which Hohepa originally was not able to offer.

“When the first people presented with dementia, they had to move to rest homes, where sadly they would not last very long and usually pass away within six months,” says Trelease.

Moving their clients away from Hohepa, however, was contrary to the commitment the organisation had made to its members that they could live out their days in their own environment.

“Dougie Brown was one of our original clients back in 1964 and when he started developing dementia, his mother Jendy refused to let him go to a rest home and reminded us of our commitment to our people.”

Hohepa considered its options and decided to turn Dougie’s house, Rose Cottage, into a dementia unit within Hohepa.

“We had to move Dougie’s house mates to different houses on our grounds, which got some resistance from the families, but they now tell us that we made the right decision,” says Trelease, who adds that the establishment of the dementia unit was only possible thanks to close collaboration with the Canterbury District Health Board.

“Tracey Hawkes from the CDHB has trained our staff in the Walking In Another’s Shoes programme to give them dementia related skills and helped us set up Rose Cottage.”

Juliet Nelson is the Integrated Support Manager running Rose Cottage and she says the big difference with a normal rest home are the staffing levels and the fact that people stay amongst their own people in a familiar environment.

The five clients who currently live at the cottage have two staff members, which is a significantly higher ratio than rest homes, which enables the staff to engage with the clients more one-on-one and find activities that fit the stages they are in.

“They remain part of our community and live as a family. They can watch the meals being prepared and sit around the table to have dinner,” says Nelson.

Hohepa has clients ranging from 6 to 82 years of age. “So they should not be moving out at the most vulnerable stage of their lives,” says Trelease.

“They should be able live out their lives in a familiar environment,” says Trelease who adds adds that the demand for dementia care is increasing and Hohepa are about to open a second unit.

“It feels like we’ve got a flood coming, and not just here. Other providers are contacting us because they may have one or two people getting dementia but are not able to set up their own units, so I think we will need a lot more collaboration in this space,” says Trelease.

Geraldine Whatnell on the other hand feels that the flood is more likely to be trickle.

Whatnell is part of the National Dementia and Intellectual Disabilities Steering Group and the first qualified Nurse Practitioner Dual Disabilties in New Zealand, specialising in intellectual disabilities and/or Autism Spectrum Disorder and associated mental health needs.

She says the most recent research indicates that the numbers of people with Down syndrome developing dementia may not be as high as assumed a few years ago.

Whatnell says he numbers may be inflated because many people with Down syndrome are incorrectly diagnosed as having dementia.

“Someone may present as being confused or off their food and doctors often go straight to dementia because they see someone with Down syndrome. In many cases, however, there could be other health reasons that can be easily reversed,” says Whatnell.

She says that people with Down syndrome are often diagnosed too late because they do not have the language skills that indicate any changes.  “So caregivers and health providers need to look for other indicators.”

The early warning signs for dementia is often epilepsy and starts presenting itself in the late 40s.

To help the doctors with their assessment, Whatnell hopes one day soon every person with Down syndrome will complete a baseline test when they are around 30 years, the Baseline Observation of Functioning For People with Intellectual Disabilities (BOFIID).

“And once you have that baseline doctors can compare those data when that same person presents later in life,” says Whatnell, adding that early diagnosis can lead to better support, better quality of life and less anxiety for the families.

To get a clearer picture if there is any onset of dementia in their 40s, caregivers can also use another effective screening tool, the Dementia Screen Questionnaire for Individuals with Intellectual Disabilities (DSQIDD).

Unfortunately, the Ministry of Health does not have data on how many people with Down syndrome in New Zealand have dementia.

Toni Atkinson, Group Manager Disability Support Services at the Ministry of Health, says the Ministry is aware of the misdiagnosis issue, but hopes the DSQIID baseline will help health professionals and support workers to notice any earlier decline in functioning.
“New Zealand has a growing and ageing population and we recognise that people with Down syndrome and their families will also be looking to the future and what supports are available.”

By Coen Lammers

During the recent upheaval caused by the COVID-19, many events, including World Down Syndrome Day were severely affected.
As people were trying to get their heads around the day-to-day life in a bubble, some new developments also slipped under the radar, including the launch of the wonderful new website of the New Zealand Down Syndrome Association.
Over the past few years, the NZDSA created a vision for a modern website to suit the needs of our community and to display the wealth of resources and information available to the New Zealand Down syndrome community.
We had hoped to give the new website the attention it deserved with a large launch event that would attract the attention of our members and the wider community. Unfortunately, the launch was overshadowed by the COVID-19 lockdown,  so we thought it might be helpful to highlight the sections that might be of interest to our community or anyone involved in their lives.
During the planning phase, it became clear that for many people, the website would be the first port of call, to get their first information about Down syndrome, especially for new and expecting parents, as well as their whānau and friends.
The first section of the new site, provides extensive information on Down syndrome, for all the different stages of life and includes specific sections for parents, family, friends and professionals who are looking for more information.
Thousands of health professionals, educators, employers or caregivers support people with Down syndrome in our community every day and the new NZDSA website aims to provide them with background knowledge and explain the positive (or negative) impact they could have on their lives. 
The website has an entire section for people with Down syndrome where they can find stories about their peers that might give them new ideas about what they can achieve and get involved in, or give them some new information about finding a job, playing sports, making friends, or setting up a flat. 
The section also includes more background on STRIVE, the self-advocacy group of the NZDSA that provides input to our National Committee and for government agencies that work with people with disabilities.


The website showcases a wide variety of inspirational stories of people with Down syndrome from all ages, leading meaningful and exciting lives, as a work-mate and employee, as a friend or a partner, as a flatmate, as a school friend, as a sports star, as a business owner or as an artist.
One of the most important sections of the website focuses on support that the NZDSA provides and where you can find help in your own regions. That section also includes links for local Down syndrome support groups, other agencies and key contacts in your regions that help whānau with questions around health, benefits, education, employment, housing, sports, arts and advocacy.
We hope the website can be a one-stop shop for anything relating to Down syndrome, but we are aware that this is only the starting point. 
We want to grow and enhance the website to truly reflect the New Zealand Down syndrome community so we welcome any feedback, suggestions and questions that will enable us to add more layers or make changes to improve existing content.
We hope you will find the new website useful, easy to navigate and interesting, but don’t hesitate to contact us with your suggestions.


By Coen Lammers

As the New Zealand Down Syndrome Association is heading into its 40th year, an effective  and strong representation of the Down syndrome community is getting more important with each year.

The NZDSA was founded in 1981, initially to support parents caring for a person with Down syndrome, but over the years this role has expanded rapidly to become a multi-faceted support and advocacy organisation.  
The volunteers and part-time staff that keep the wheels of the NZDSA turning are now recognised as key stakeholders in the most crucial discussions and decisions impacting on our community at a national and international level.
“We are recognised as an important parent organisation and a significant part of our work now involves stakeholder meetings that involve policy change and advocacy at Government level,” says Zandra Vaccarino, the National Executive Officer of the NZDSA.
Zandra, President Kim Porthouse and other members of the National Committee are in regular contact with the organisations that play a vital role in the lives of people with Down syndrome, like the Ministries of Health, Education, Disabilities, and Social Development.
“In some cases, we just keep advocating for years until they start listening to us,” says Zandra, who has been the face of the NZDSA at Government forums for the past 16 years.
The NZDSA also has a long representation on the National Screening Unit to discuss the practical and ethical challenges around increased screening for Down syndrome, while Zandra also works with Human Rights Commission, the Health and Disability Commission and the Disability Transformation Steering group.
STRIVE self-advocate Andrew Oswin and committee member Averill Glew also represent a strong NZDSA voice in the Disability Consumer Consortium, which represents all key stakeholders in the disability sector.

NZDSA staff meet with regional representatives.


“The NZDSA has a big voice in all these advisory and decision-making bodies, but it is vital that we represent everyone in our community. We encourage every person and family with Down syndrome to become an NZDSA member, so we know exactly who we represent in those discussions,” says Zandra.
“And the more people we represent, the bigger our voice is and the harder it is for any agency to ignore us.”
Unfortunately, the Government does not keep any comprehensive records of people with Down syndrome in New Zealand, who they are, where they live or what challenges they might be facing, individually or collectively.
“We only have records of how many children with Down syndrome are born in hospital, which has been roughly between 52-58 each year, but after that it becomes guess work. So we are really working hard to build our contact list, so we can find out exactly where our community is and what we can do to support them. 
“That’s why signing up to the NZDSA through our website (www.nzdsa.org.nz) is so important, so we can understand what you need and give you the information that is relevant to your situation.”
Zandra admits the limited resources of the NZDSA makes it difficult for the national body to provide advocacy support on an individual basis when parents need support dealing with a school, a doctor or an agency, but the association will know where families can get local support.
“We may not be able to go into a school with a parent, but we provide them with local contacts in our own community, a regional representative, or sometimes IHC.
“In many cases, however, we are able to provide parents with tips and strategies to upskill the parent, so they can deal with the issues themselves. Being able to empower a parent is one of the most powerful parts of our job.”
The NZDSA was created to support parents, which is still at the heart of their mission, but these days the focus has also shifted to empowering the person with Down syndrome and teach them how to advocate for themselves.
The NZDSA organises regular self-advocacy workshops in which its members receive specialist training to teach them about their rights and how to advocate for their own rights, as well as others.
The STRIVE group of self-advocates includes a six-person Advisory and Leadership Group who provide invaluable advice to the National Committee, as well as nine other self-advocates who are gaining new skills to potentially move into leadership roles.
“These people are the most powerful ambassadors of our community. They are all confident, articulate and go out in their own communities to represent the wider New Zealand Down syndrome community,” says Zandra.
Many of the STRIVE members have also taken part in the annual NZDSA youth camps, either as participants or as a support person.
The Youth Camp at the Sir Peter Black Marine Education and Recreation Centre in Long Bay is an annual highlight on the NZDSA calendar.
“Each year, the NZDSA invites young people nominated by each region to join a weekend of adventure and fun,” explains Zandra. 
“At the camp they make new friends, learn new skills and build their confidence.”
The Youth Camp is supported by volunteers from each region, which enables these regional representatives to share experiences and become part of the national network.
The camp alternates between a camp with more independent young people who are happy to travel without their parents, while every second camp focuses on young people with higher needs who require regular support from a caregiver.
“But we really want the camp also to be a real respite weekend for those parents who are on duty 24/7.  Where possible, NZDSA volunteers take over the care of the youngsters during the activities, so the parents can relax, go out for a coffee or  wine, and participate in other activities for the parents, as well as sharing experiences with other parents who have children with very high needs.”

The NZDSA ball in Auckland in December.


Aside from the work by the NZDSA, the Down syndrome community is also fortunate to have strong local support groups in many regions that provide boots on the ground for support, advocacy, social contacts and information.
The NZDSA committee is made up of representatives from the six zones, who liaise with their own regions and representatives from the local Down syndrome groups.
The committee has regular meetings, in person or by Zoom, to discuss current issues the NZDSA needs to be involved in and to receive feedback and ideas from the regions.
Zandra says that the interactions are a two-way street, where the NZDSA in some cases refers inquiries to the regions, while in other cases the regions contact the NZDSA to get the support they need. 
“Our National Administrator Linda te Kaat takes many of those calls. We call her Detective Linda because if she does not have the answers, she will keep digging until she has found the best person or organisation to help out,” laughs Zandra. 
“And we don’t just give out a number, but we will contact that organisation first to find out if they are the best people to help our members.”
Linda te Kaat also manages a large pool of resources that are available for NZDSA members, like Numicon kits, educational DVDs on several themes, and distributes the new parent packs for new parents of children with Down syndrome.

Zandra Vaccarino with her son Vincent and his wife Rachel.


Aside from its advocacy and information roles, the NZDSA has been organising or has been part of numerous workshops on a host of issues like health, education, ageing, self-advocacy, employment or human rights.
“In some case they are just for our community, but in many workshops we work closely with other organisations in the disability sector. We think it is important for us and our members to build communities of people who face the same challenges,” says Zandra.
Those connections are not just restricted to our shores, as the NZDSA also collaborates with international groups like Down Syndrome International (DSI) and Inclusion International. The NZDSA staff are in regular contact with their key counterparts overseas, especially in Australia. 
The NZDSA staff take part in virtual conferences, including the Asia Pacific Down Syndrome forums, and if the NZDSA is able to secure funding support, they attend the World Down Syndrome Conference every two years in person, to share the latest research and developments with the regions and to continue building international connections.
In the lead-up to World Down Syndrome Day, the NZDSA works closely with DSI to support the annual theme the international community chooses for that year. 
“Most years we have created a special video on that theme that we distribute to the community, to media and through our social media platforms to celebrate people with Down syndrome and raise awareness around New Zealand,” says Zandra.
The NZDSA Facebook page has a large following, inside and outside the Down syndrome community, but is just one of several communications tools it uses to communicate with its own families, as well as other stakeholders like educators, Ministries and health professionals.
“The NZDSA recognises that communicating and connecting our community is the most important part of our role, so we have invested in a part-time communications advisor, who is also the editor of our quarterly journal CHAT 21,” says Zandra.
“He works closely with our Social Media Officer to connect through social media and put out a regular E-newsletter to all our contacts, as well as looking for media opportunities for stories around Down syndrome,” says Zandra.
She explains that the NZDSA uses those communications platforms to share their own news, but also support the regions by promoting regional news and events by sharing it with all their contacts.
“All the different regions are doing an amazing job helping our families, and are often best placed because of their local connections, so our role is to provide a connection between the regions, support them where we can, and represent them at a national level.
“But we are only as good as the feedback and support we get from everyone in the regions. “So we are working hard to find and connect with every family in New Zealand, be more visible to our community, so we can represent them more effectively.”

The 2020 General Election have been moved to October 17, which has affected the events organised by disability groups around New Zealand to get our community involved. Please check the dates below.

The Electoral Commission is providing Easy To Read material to understand the process. 

CLICK HERE TO DOWNLOAD. 

This year there are also two referendums that you can vote on – the Cannabis legalisation and control referendum and the End of Life Choice referendum.

If you haven’t already, now is a good time to enrol to vote. There is information about how to vote in accessible formats.

If you need help to vote there are options which include voting with help from a support person or the phone dictation service. Find out about the options for help/alternative ways to vote.

You can find out more about the referendums at referendums.govt.nz. Referendum information has also been put together in accessible formats.

Election Forums

DPA has been collaborating with various other organisations around the country to organise Election Forums – meetings focused on disability issues where you can hear from candidates and ask questions.

 

Christchurch Election Forum

When: September 19, 1pm – 4pm
Where: Deaf Society of Canterbury, 80 Fitzgerald Ave, Christchurch

(This forum was originally planned to be held on August 22 and has now been moved forward to September 19.)

This is your chance to tell the main political parties about the important issues affecting the Deaf and disabled community.

There will be speeches and a question and answer session (Q and A facilitated by Karim Baradi).
Afternoon tea and NZSL interpreters will be provided.

For more info contact [email protected]

This forum is hosted by DPA and the Deaf Society of Canterbury

 

Waikato Election Forum – cancelled

When: August 24, 6.30-8.30pm
Where: Blind Low Vision NZ, 15 Liverpool Street, Hamilton

Plans are currently for questions to be emailed out to candidates and either written or videoed responses shared via Zoom at a later date TBC.

Wellington Election Forum

When: 1 October, 4pm
Where: Wharewaka Function Centre, Taranaki Wharf, 2 Taranaki Street, (waterfront) Wellington

(This forum was originally planned to be held on 26 August and has now been moved forward to 1 October. It is possible some of the political panel names may change, but we hope to be able to update soon once the panel for the new date is confirmed.)

The candidates on the panel are Greens MP Jan Logie, Alfred Ngaro from National, Labour’s Greg O’Connor, Erika Harvey from New Zealand First and Simon Court from ACT.

Our six areas of focus for this election are education, housing, employment, the health and disability review and proposed restructure of disability support services, improving wellbeing for disabled people and welfare reform and ensuring infrastructure and transport is accessible for disabled people in the COVID recovery.

Please register to attend or for details of the livestream event

This event is hosted in partnership: DPA, CCS Disability Action, IHC, Deaf Aotearoa, NZDSN and People First

Auckland Election Forum

When: 29 August 2010, 1-3 pm
Where: Now online only due to the new Covid-19 alert level

(Read the Easy Read version of this invitation)

 Note: In consideration of the move to Alert Level 3 in Auckland, a decision has been made to move the upcoming Auckland election forum to an online-only event at the same date and time. Revised plans are currently underway and we will update this page as more information becomes available.

My Voice Matters is holding an election forum in Auckland to inform you on disability issues before the General Election. NZSL interpreters will be there. The event will also be live streamed.

Please register to attend the event in person or online.

We will be joined on the panel by Minister Carmel Sepuloni from New Zealand Labour Party, Ms Golriz Ghahraman MP from Green Party of Aotearoa New Zealand, Mr David Seymour MP from ACT, Hon Maggie Barry MP from NZ National Party, and Mr Robert Gore from New Zealand First.

The candidates will be asked a range of disability-related questions on topics like housing, education, employment, transport, accessibility laws, and the health and disability review. The forum will be followed by light refreshments.

This event is a My Voice Matters New Zealand collaboration with Blind Citizens NZ, Blind Low Vision NZ, CCS Disability Action, Cerebral Palsy Society of New Zealand, Complex Care Group, Deaf Aotearoa, Disability Connect, Disabled Persons Assembly NZ – DPA, Epic Studios, Lifewise, Manawanui, The Muscular Dystrophy Association of NZ, New Zealand Disability Support Network – NZDSN, People First New Zealand, Vaka Tautua and YES Disability Resource Centre.

Dunedin Election Forum

Postponed – new date TBA

When: 8 September,  6-8 pm
Where: Blind Low Vision NZ Rooms, 458 Hillside Road, South Dunedin

DPA has been collaborating with various other organisations around the country to organise Election Forums – meetings focused on disability issues where you can hear from candidates and ask questions.

 

COMPARE YOUR CANDIDATES

The Spinoff has created a great website to compare parties, candidates and policies to help decide you vote.

Please follow this link to get to their website.