National Administrator and Finance Officer

New Zealand Down Syndrome Association (NZDSA) works alongside families, whānau and carers to support and empower people with Down syndrome to realise their potential and aspirations through all life stages and within all communities. We work towards the vision that people with Down syndrome are valued and equal members of their community, fulfilling their goals.

Location: not area specific

  • Work from home (some travel involved)
  • National not-for-profit/charity
  • Part-time position (15hrs a week)

Key Responsibilities

This role is responsible for the day-to-day operations of the organisation, which includes:

  • Providing support to families, whānau and carers via phone, email, and direct mail
  • Liaising with, and promoting NZDSA with other agencies
  • General office management
  • Supporting the governance committee, including being Secretary at meetings (quarterly)
  • Managing financial processes
  • Obtaining funding through grants and fundraising initiatives
  • Working on projects, such as workshops and resources

The person

You will share our passion to make a difference in the lives of others, specifically in the lives of people with Down syndrome, their families and whānau.

You will:

  • Be well organised and have excellent attention to detail
  • Have effective oral and written communication skills
  • Have strong interpersonal and relationship building skills
  • Ideally have experience in advocacy and support
  • Have good documentation and analysis skills
  • Be self-motivated, able to work autonomously and flexible with working hours

Skills and experience

We require someone who is computer literate and experienced with the Microsoft Office Suite, specifically Word, Excel and PowerPoint. Knowledge of accounting software (MYOB/Xero) and grant funding experience is an advantage.

Administration Support Officer

 

Location: wider Palmerston North area preferred

  • Work from home (some travel may be involved)
  • National not-for-profit/charity
  • Part-time position (5 hours per week)

Key Responsibilities

This role is responsible for supporting the team in the day-to-day operations of the organisation, which includes:

  • Coordinating travel, accommodation and food for National Committee meetings, Strive meetings, workshops, camps and forums
  • Managing administrative and coordination duties for projects such as workshops, forums and resource development
  • Providing general administrative assistance to the National Executive Officer.
  • Assisting with overflow work from the National Executive Officer and National Administrator and Finance Officer
  • Backup for Payroll Administration
  • Managing incoming/outgoing mail, including emails and National PO Box, in a timely manner
  • Assisting with the website when required
  • Obtaining quotes for resources as required
  • Assisting with tasks related to fundraising strategies as directed by the National Executive Officer or National Administration and Finance Officer
  • Undertaking any other duties, responsibilities and special projects as assigned by the National Executive Officer or National Administration and Finance Officer

The person

You will share our passion to make a difference in the lives of others, specifically in the lives of people with Down syndrome, their families and whānau. You will:

  • Be well organised and have excellent attention to detail
  • Have effective oral and written communication skills
  • Have strong interpersonal and relationship building skills
  • Ideally have experience in advocacy and support
  • Have good documentation and analysis skills
  • Be self-motivated, able to work autonomously and be flexible with working hours

Skills and experience

We require someone who is computer literate and experienced with the Microsoft Office Suite, specifically Word, Excel and PowerPoint.

For more information or to apply, please contact Linda te Kaat, [email protected]  Closing Date: 31st December 2020

 

The new Living with Down Syndrome publication will destroy myths and help overcome barriers for people with Down syndrome to reach their full potential.

The New Zealand Down Syndrome Association (NZDSA) this week published the enhanced 2020 edition of the resource to coincide with World Down Syndrome Month and regards the booklet as a must-have tool for any family or professional interacting with people with Down syndrome.

“Living with Down Syndrome was redesigned as an educational resource with the most current information about Down syndrome from around the world to create greater awareness of the abilities of people with Down syndrome,” says Zandra Vaccarino, National Executive Officer of the NZDSA.

Vaccarino says that the NZDSA had been using an older version of the resource for the past few years, but new research, increased knowledge and different attitudes to the abilities of people with Down syndrome required a complete overhaul of the publication for 2020.

“Our staff and our volunteers have been working on this booklet for months, tapping into the latest research from our global networks, as well as 40 years of parent experiences since the NZDSA was created.”

Aside from the wealth of helpful information for families to deal with different phases of life, Living with Down syndrome is also aimed at the wider community to address preconceived ideas.

“An important aspect of this resource is to address the myths and truths about Down syndrome, so that we can overcome unnecessary barriers which exclude people with Down syndrome to fully participate  in the community,” says Vaccarino.  She added that medical and educational professionals, support workers, employers or anyone else interacting with people with Down syndrome will find that this resource will provide guidelines on how to have empowering engagements with people with Down syndrome.

“This resource was redesigned as an awareness tool to inform and empower the wider community to work alongside the NZDSA to realise our vision that people with Down syndrome are valued and equal members of their community, fulfilling their goals.”

Vaccarino says that ignorance and lack of knowledge often stopped people with Down syndrome to be given opportunities to reach their potential.

“Our people have the same dreams and ambitions as everyone else, to go to school, get a job, go flatting and to have relationships.

“Sometimes they might just need a bit of help to get started, until people realise they can be a great asset in any community, school, club or workplace,” says Vaccarino, who adds that the new publication is also more representative of our diverse membership in Aotearoa.

With increased focus on antenatal testing for Down syndrome, the new version of Living with Down Syndrome includes a large section about the subject to help expecting parents and medical professionals navigate this complex issue.

“We get a lot of questions on this subject so this addresses frequent requests for information regarding antenatal screening.”

Living with Down Syndrome can be downloaded for free once you register your details on https://nzdsa.org.nz/members/resources/

 

 

 

 

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 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 NZDSA recently conducted a survey to find out how people with Down syndrome experienced the COVID-19 lockdown period in April and May. We want to thank the 90 families who took the time to respond to one or all three surveys. Editor COEN LAMMERS has looked at the responses.


The first COVID-19 lockdown was a forced experience shared by all New Zealanders, but for every family those weeks had a different impact. 
People with Down syndrome experienced the weeks without their usual routines differently than others, as they may not have always been able to fully understand the threat the virus was posing to our community.
For their families, the challenges were quite different and for many whānau, having to care for their families, including a child with special needs without the usual routines and support, was not always easy.
Most of us however know that our children, and our families, are a lot more resilient than many give them credit for, and the NZDSA survey proved just that.
One of the most positive statistics from the survey showed that 90% said that their wellbeing had been the same as usual or even better, while 10% did not feel so good and one parent had been feeling very badly during lockdown.
When asked about their child with Down syndrome, 90% of the respondents said that the well-being of the child had been the same as usual or better, with 10% feeling that their child’s wellbeing had been negatively affected by the lockdown.
A few parents reported that lockdown caused anxiety in their household about the global pandemic, about their jobs, and in cases when their child was particularly vulnerable to any virus.


The overwhelming majority of parents spoke about the quality time with their family and how they enjoyed life slowing down a bit, and to reconnect with other members in their household.
“If this is what retirement is like, bring it,” wrote one parent.
While most children coped really well, almost all respondents mentioned how much they missed their friends.
On the flipside, most children really enjoyed spending so much time with their parents and siblings, especially the older siblings who moved back home during lockdown.
The biggest challenges mentioned by parents were boredom and change of routine. Most of the children rely on their weekly routines, so many parents invested a lot of energy into creating new daily and weekly routines to give their children some new stability at home.
The universal love for electronics was a handy fall-back and many children enjoyed a lot more screen time during lockdown, but parents struggled to wean them off the devices.
Parents also reported that their children struggled with social distancing, so recreationally outings could be a challenge. This would be specifically tricky if they would bump into friends or neighbours and the children were not able to touch their friends.


For the parents, getting no breaks and no support, day after day, was exhausting and a quarter reported to feel lonely during lockdown.
“He was glad lockdown was over because he was sick of me being the teacher,” said another parent.
Many of the respondents shared their frustration of not being able to fully explain the nature of the pandemic and why they had to stay at home.
Some young people were particularly affected by not being able to see their friends or family during lockdown and were confused what was going on.
“He couldn’t see his grandparents for so long that he thought they had died!” wrote one parent.
Most parents managed to help their child comprehend the situation by talking about bugs and the importance of washing your hands, which seemed to make sense to most children.
Only a small number of respondents had to deal with behavioural issues triggered by lockdown, including some anxiety and aggression, but in some cases that settled down as the new reality set in.
Some parents reported that their child had some toileting accidents, while others mentioned that sharp increase of screen time caused some “cold turkey” aggressive reactions when parents started to reduce the screen time.
One parent reported that their child decided she “was never going back to school”, but that the teachers made the return so exciting that she was keen to return.
From the families who responded, the percentage of people with Down syndrome in the home included 19% pre-schoolers, 20% primary school age, 26% high-school age and 35% between 21-45 years old. Only 2% were over the age of 45.
Of those children, 93% lived at home with family while only 2% were in supported living, 1% living independently and 3% in residential care.
Some of the parents who were separated from their child during lockdown reported that it was “heart-breaking” not to be able to visit their loved one, but others reported that virtual meetings really helped to ease the separation anxiety.


Services and information
Obviously, lockdown hugely impacted on the normal services that were able to be provided and 75% of parents reported that their family was impacted, with 55% getting little or no service at all.
Even though parents had to cope without their usual services, there was a universal understanding that the pandemic was an extraordinary situation, so the number of parents unsatisfied with their services only increased slightly.
Many parents were disappointed that they were not contacted more often, or at all by their usual service providers, including more interaction with teacher aides, speech therapists and OTs through Zoom calls.
Most caregivers however were very relaxed about being left to their own devices and understood that any physical interaction would create health risks.
From the 90 respondents only one was unable to access essential services or groceries and 11% said they could only get limited supplies.
Most people, 65% got their groceries at the supermarket, 31% shopped online while 15% used the priority shopping option.
As far as access to PPE was concerned, 27% said they could not get access, while 45% did not need to.
Of the 27% who did have access, the vast majority (68%) purchased it themselves, 7% received them from their service providers while 24% got them through their IF Host.
When asked about information about COVID-19, 85% was happy with the level of information they received while 15% would have liked to have seen more.
The Ministry of Health was the main source of information (79%) while others relied on information through their family networks (43%). The NZDSA (24%), the Ministry of Education (29%) and MSD (15%) were also mentioned as good sources, as well as support groups (31%), providers (21%) and funding agencies (27%).
Being stuck at home, it was no surprise that social media and websites were used by 70% of families to find key information.
Families also received direct information through emails and newsletters (20%) or by talking to family and friends (31%).


Education

The survey revealed that 52% of the parents provided some home schooling for their child with Down syndrome. 
Of the remaining parents, 18% had not done any home schooling, while for 30% home schooling was not relevant.
Of those parents trying to continue their child’s schooling from home, about a third found it difficult or stressful while two thirds said they managed without too much stress.
Among this group, around 20% felt that the schools had not provided them with appropriate material or support to learn from home. About half of the children who lived away from their family came back to the family home for lockdown.
While many parents had no concerns going back to school, more than half of the respondents were and are still extremely concerned about how exposed their children would be at school.
Many questioned their schools’ social distancing and hygiene policies, especially in learning units and whether their child would be able to adhere to those rules.
One strong sentiment coming through the responses was universal confusion among parents whether their child with Down syndrome did or did not fall into the high-risk category under Level 2 or 3.
As a results several parents kept their children at home for weeks, even when all schools were back to their normal routines.
“She hugs people so we decided to keep her home,” wrote one parent, while another parent kept their child at home for eight more days due to medical concerns.
“We were extremely anxious and still are.”


New opportunities
One of the most interesting revelations of the survey was that our families and support services discovered that the digital age is offering wonderful new opportunities to connect.
Parents enjoyed that they were able to talk to their GP, speech therapist or teacher through their laptop and one wrote that “We will continue  to do speech therapy through Zoom.”
Another parent reported that they will continue with online learning when their child is sick at home in the future. 
With a higher demand for digital services, a lack of access to good internet or appropriate digital devices proved to be a huge source of frustration in some households.

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.

 

Linda te Kaat  attended the New South Wales Down Syndrome Health Conference and reports how oral health is a major issue to consider for caregivers.

Oral health is the greatest health need for people with Down syndrome.  Oral disease shares common risk factors with cardiovascular disease, diabetes, cancer and chronic obstructive pulmonary disease. 

What is dental disease, and can it be prevented? 

 

  • Decaying teethA cavity can result in tooth enamel dissolving over time.  Early prevention can reverse tooth decay. 

 

  • Periodontal diseases This effects the gums and bone around the teeth.  Gingivitis is reversible and signs are red and swollen gums and bleeding on brushing.  There will be no signs on an X-ray and no pain and may be present in more than one tooth.  This develops more quickly in people with Down syndrome due to an altered immune reaction to plaque.  Bacteria invade below the gums to cause inflammation which can lead to bone loss around the tooth root if not treated.  X-rays are the only way to show if there is any bone loss. This also leads to bad breath and teeth can get loose or move and pain can occur on biting.    There is often no pain in late stages of this disease and it always requires dental treatment.     

 

  • Trauma to tooth or jaw.  Falls can cause dental trauma.  Any tooth that has been chipped, moved or discoloured needs immediate treatments.  Teeth that have been knocked out can be put back in again but never touch the root of the tooth and get the tooth to a dentist immediately.  Dead teeth do not hurt but can be infected.  Falls on the chin with problems opening the mouth may be a fracture to the jaw. 

 

  • TMJ (Temporomandibular joint & muscle disorders). This is caused by trauma to the jaw or TM joint or by grinding teeth from stress.  That symptoms to look out for are  pain or stiffness in the chewing muscles (often one sided), limited movement or locking of the jaw, painful clicking and popping or grating in the jaw on opening. This conditions tends to be more common in woman.  The treatment is often simple and in most cases the discomfort will go away with little or no treatment.  Eat small pieces of food, apply ice packs or heat packs.  Avoid extreme jaw movements like wide yawning and chewing gum.  Short term use of Nurofen may be useful. 

 

Without X-rays, up to 40% of decay can be missed and therefore it is vital that these are carried out routinely.   

Toothbrushing requires the same manually dexterity as handwriting and many people with Down syndrome find this difficult therefore regular dental care is required.   

Often cysts may not be painful, and antibiotics can stop the pain and infection, but infection can still be in the bone and not picked up without an X-ray.   

Chronic pain can lead to changes in behaviour and people with Down syndrome can have a high pain tolerance therefore once it reaches the level of pain it can sometimes be a major dental problem.  
Always use toothpaste with fluoride in it and never rinse the mouth after brushing.   

Savacol is good for plaque build-up and a mouthwash with fluoride is ideal.  This can also be used on a toothbrush to brush around teeth if they person is unable to swish and spit.    

The Oral-B electric toothbrush was also recommended as not only one of the cheapest but also the best to use but sometimes electric toothbrushes are not tolerated by our young onesso use gradually to get used to it and start at a young age.   

 

You should seek professional care when there is: 

  • Any swelling of the mouth, face or neck.   
  • Any ulcer that does not heal 
  • Any persistent burning of the mouth 
  • Any severe pain in the teeth – even if it stops 

 

For people that cannot explain their symptoms, watch out for a change in eating habits, oral behaviour or bad breath 

 Before going for treatment, discuss with the person with Down syndrome what is going to happen and use books to illustrate what they can expect. 

Always keep the language positive and if possible try to have a first visit as an introduction without any serious treatment. 

 

This week is National Volunteer Week in which we honour the collective energies and mana of all volunteers in Aotearoa.
They grow our people, open minds, open hearts and create joy. And no more so than during their essential contribution to communities during COVID 19.
Well before COVID 19 our volunteers were cherishing and caring for our people. During COVID 19 our country’s volunteers rallied to keep communities connected, to help them get well, stay well, and to answer the call to unite and be kind.
“The New Zealand Down syndrome Association wants to specifically thank all the volunteers who so generously support people with Down syndrome, and their families and whañau, to live their lives to their full potential,” says National Executive Zandra Vaccarino.
Volunteers have revealed through connecting that we all belong.
“And through generosity and ngākau nui, big heartedness, communities will be strong, be well, and be able to meet challenges and changes, both big and small,” says Zandra.
This week is National Volunteer Week 2020 until June 27 and this year’s theme is ‘Te Hua o te Mahi Tahi I or The benefit of working together’.
 Join us this National Volunteer Week to celebrate how our communities are stronger when working together.
#NVW2020 #mahitahi #teamwork #tautoko #support #whakamiha #appreciate #volunteers #thankyou #AotearoaOfKindness

By Diane Burnett 

To celebrate her beautiful baby girl Paige and World Down Syndrome Day 2020, Dawn Goddard had an inky idea.

Dawn wanted to get as many people as she can to get the world-renowned ‘the lucky few’ tattoo on 21st March, World Down Syndrome Day 2020.

Over 50 people from across country from the New Zealand Group for Parents of Children with Down Syndrome Facebook group showed an interest.

Off the back of this interest, Dawn contacted and organised quotes from a few tattoo studios and has confirmed that Aaron V, co-owner of the family owned private tattoo studio 2 Sparrows Tattoo in Pakuranga, has kindly offered to donate his time for free and change only $50 per ‘the lucky few’ tattoo to cover the cost of the materials required.

“The minimum cost for most tattoos nowadays is $150 plus, so this is amazing,” says Dawn.

Dawn, a photographer, also photographed the event and hoped to get the media involved to create a fun news story to raise awareness of Down syndrome for World Down Syndrome Day 2020.

The original idea and design started in the United States where Mica May, a designer, had an idea to celebrate being a parent of a child with Down syndrome by designing a special tattoo for #theluckyfew.

She shared her idea with several other mums at their first gathering, having previously only met online. Their connection was immediate, and they discussed getting matching tattoos to acknowledge their bond.

At that point Mica spoke up and told them about the reoccurring dream she’d been having for a long time.

 

In the dream, she wakes up with three black arrows on her arm – always the same design and always the same placement. As she described the design from her dreams, tears started rolling down the faces of the other mums, and everyone said “Yes! This is our design”.

The three arrows are the perfect symbol for parents of children with Down syndrome, because the number three is representative of the three 21st chromosomes that result in Down syndrome and the arrows represent how the parents of these special children rise up and move forward.

“We rise the highest after we’ve been pulled back and stretched — sometimes even more than we think we can bear,” says Mica May.

The group tested the design on themselves that evening using a pen and decided to all get the tattoo the next day. But what started as a bonding moment for a small group of friends has grown to include hundreds of other parents from all over the world.

Last year, in Newquay in the UK, thirty parents joined the global campaign to raise awareness of people with Down syndrome. Each got ‘the lucky few’ tattoo to show how proud they are of their children and siblings with Down syndrome, and a person with Down syndrome also got the tattoo along with her mother and sister.

Dawn contacted one of the organisers of this event and got the details for the original designer, Mica May, who she contacted. “She has given us her blessing to use the design,” says an excited Dawn.