The NZDSA is extremely pleased we can offer our members an invaluable new resource to learn about the needs of the older person with Down syndrome, as well as a follow-up workshop to answer your questions.

The digital resource The Golden Years, Ageing and Down syndrome is presented by expert Geraldine Whatnell and discusses how ageing may affect their health and wellbeing, as well as supports they may need if they are diagnosed with dementia.

On October 27, at 7pm, Geraldine will host a live webinar as part of the NZDSA 40th Anniversary Virtual Down Syndrome Conference in which she will answer questions from our community. We suggest you watch the video first before you sign up for the webinar. (Click here to sign up) .

The valuable video offers background on a range of subjects and demonstrate best practice when supporting people with Down syndrome. The subjects include:

(Click here to watch or download the full video).

  • Ageing and Down syndrome
  • Importance of health checks
  • Explores the connection between  Down syndrome and dementia
  • Looks at the myths about Down syndrome and dementia
  • Assessment and diagnosis of dementia
  • Understanding dementia and the stages of dementia
  • Strategies we can use
  • How we can help people with Down syndrome who live with dementia.

Presenter Geraldine (Dina) Whatnell is the Nurse Practitioner Mental Health and Addictions Service Palmerston North Hospital.

Geraldine brings with her nearly 40 years of professional skills and knowledge in the specialist area of developmental disabilities (intellectual disabilities and/or Autism Spectrum Disorder) and mental illness.

Alongside this, Geraldine has a wealth of personal lived experience as her younger brother Mark having a diagnosis of Down syndrome .

 Click here to sign up for the webinar on October 27.

Getting older is associated with many changes, both biological and social. For someone with Down syndrome these changes can be particularly daunting and difficult.

There is evidence to suggest that some biological problems related to ageing can occur earlier in people with Down syndrome than in the general population.

The marked improvement in life expectancy for people with Down syndrome (an average of 60 -70 years, compared to an average of 9 years around 1900) also means that the problems relating to the condition and old age are only now being researched and addressed.

Unfortunately,  there are very limited few resources available for families and whānau who support and care for aging people with Down syndrome.

The NZDSA recognises this gap and decided to develop this resource to start filling this void.

In New Zealand there is no strategy or plan to address dementia for the general population therefore there is even less knowledge, information and support for people with Down syndrome.

If you are interested you can read and support this open letter to the Government to be more pro-active in this area.

https://mailchi.mp/alzheimers/stand-with-us-sign-our-open-letter-to-government?e=59bc99ddea

Click here to watch or download the video.

 Click here to sign up for the webinar on October 27.

You do not want to miss this.

Make sure you check out the long list of world-leading presenters, who will cover most key topics that may be important to people with Down Syndrome as part of the NZDSA Virtual Down Syndrome Conference.

REGISTER HERE

The NZDSA this month will celebrate its 40th anniversary by hosting the largest Virtual Down Syndrome Conference ever organised in this country, to coincide with World Down Syndrome Month.

The virtual conference will offer a stunning variety of high-profile Kiwi and international expert speakers who will cover a wide range of topics including education, health, speech, relationships, ageing and legal issues.

The conference will have several presentations focused on health with Andrea Simonlehner from Natural Equilibrium doing two sessions on gut health and fussy eaters, while Geraldine Whatnell will share her expertise on growing old with Down syndrome.

One session that will be exciting to parents as well as younger adults with Down syndrome will be relationship expert Dave Hicks talking about the theory and practicalities of getting into a relationship. Dave is likely to become a familiar face on New Zealand television as he was the expert on the upcoming television series Down With Love.

One of the speakers from the United States will be Kavita Krell from Massachusetts General Hospital who will explain how you can develop an innovative online health plan from anywhere in the world, while her colleague Dr Brian Skotko will do a presentation about and for siblings of people with Down syndrome.

REGISTER HERE

The conference will also offer sessions wellbeing, speech therapy, advocacy and educations, so there will be there something for all stages of life and every member of our community.

The conference will also include a number of sessions specifically for people with Down syndrome, so for the full list of those events, please click here (all these sessions are marked in orange below).

The NZDSA has hosted many conferences, seminars and workshops during its history, but geographical and financial restraints often restricted the number of people who were able to attend.

All those barriers have now been removed by modern technology and the new digital skills we have learned during lockdown.

With modern video conferencing technology, there is no reason to miss out so keep an eye on our E-new and Facebook page for upcoming details how to register.

To get all this information, make sure we can send you our newsletters, so please register your details on the NZDSA website FOR FREE, at www.nzdsa.org.nz

Some sessions will be recorded as a future resource, but many others will not, so make sure you do not miss out on the webinars you are interested.

The NZDSA is non-for-profit charity that receives no Government funding and fully depends on grants and donations, so when you register or think the webinars are of value to you and your community, please remember to make a donation, so we can continue to offer these services to raise the awareness and knowledge around Down syndrome.

REGISTER HERE

 

THE FULL PROGRAMME OF THE VIRTUAL DOWN SYNDROME CONFERENCE

Tuesday 5th October, 7pm – 8pm

Bridget Snedden, President of Down Syndrome International(DSi)

Theme: Wellbeing and Rights

Title:  Getting to the good life – The importance of having a vision

Audience:  Everyone

 

Wednesday 6th October, 7pm – 8pm

Dr Mark Sinclair, Private Practice

Theme: Wellbeing

Title: Keeping an Emotional Balance (At home with children and teens)

Audience:   Parents, whānau, professionals – all ages

 

Thursday, 7th October, 7pm – 8pm

Trish Grant, Director of Advocacy IHC

Theme: Education and Rights

Title: Are we there yet?

Audience: Parents, whānau, professionals with a focus on school-aged children

 

Saturday, 9th October, 10am – 11am

Sir Robert Martin

Theme: Rights and Wellbeing

Title: From Institution to Knighthood

Audience: Everyone

 

Tuesday, 12th October , 7pm – 8pm

Erika Butters, Director, The Personal Advocacy and Safeguarding Adults Trust

Theme: Rights

Title: Supported Decision Making – a Human Right

Audience: Parents, whānau, professionals with a focus on youth and adults

 

Wednesday, 13th October, 7pm – 8pm

Dr Maree Kirk, Director, STPDS NZ

Theme: Education

Title: Individual Education Plan – The capabilities approach

Audience: Parents, whānau, professionals with a focus on school-aged children

 

Wednesday, 14th October, 12pm-1pm

Andrea Simonlehner, Natural Equilibrium

Theme: Health

Title: Brain and Gut Health for people with Down syndrome

Please note this session will view the recorded session hosted in September (there will be no Q&A)

It will be beneficial to view this for the session with Andrea on the 27th October

Audience: Parents, whānau, professionals – all ages

 

Thursday, 14th October, 7pm – 8pm

Who: Erika Butters, Director, The Personal Advocacy and Safeguarding Adults Trust

Theme: Rights

What: Supported Decision Making – a Human Right. 

Audience: People with Down syndrome

 

Saturday, 16th October, 10am – 11am

Dr Brian Skotko,  Director of the Down Syndrome Program at Massachusetts General Hospital

and Susan Levine, Co-founder and social worker at Family Resource Associates, Inc.

Theme: Siblings 18+

Title: Adult brothers and sisters of siblings with Down syndrome: Exploring past experiences and current roles

Audience: Siblings 18+

 

Tuesday, 19th October,  7pm – 8pm

Fiona Kenworthy, Speech & language therapist

Clinical Director /Small Talk Therapy

Theme: Speech and Language Therapy

Title: Early literacy skills for children with Down syndrome – Families making a difference

Audience: Parents, whānau, professionals with a focus on early literacy skills (not age specific)

Hosted by UpsideDowns Education Trust and the NZDSA

 

Wednesday, 20th October, 7pm – 8pm

Dave Hicks, Academic Programme Manager – Unitec

Theme: Wellbeing

Title: Relationships – Theories and Practicalities

Audience: Parents, whānau, professionals – all ages

 

Thursday,21st October, 12pm -1pm

Gretchen A. Good, PhD, Senior Lecturer in Rehabilitation and Disability Studies, Massey University and Jane Lee, MSW, Tutor in Rehabilitation and Disability Studies, Massey University

Theme: Wellbeing and Rights

Title: Parenting during a pandemic:  Have any lessons been learned?

Audience: Parents, whānau, professionals – all ages

 

Thursday 21st October, 7pm – 8pm

Who: Dr Mark Sinclair, Private Practice

What:  Managing your feelings

Audience: People with Down syndrome

 

Saturday, 23rd October, 10am – 11am

Kavita Krell, Director of Customer Experience for Down Syndrome Clinic to You (DSC2U)

Theme: Health

Title: DSC2U: An online personal care plan for caregivers and primary care physicians

Audience: Parents, whānau, professionals  – all ages

 

Tuesday, 26th October, 7pm – 8pm

Andrea Simonlehner, Natural Equilibrium

Theme: Health

Title: Fussy Eaters

Audience: Parents, whānau, professionals – relevant for all ages

 

Wednesday, 27th October, 7pm – 8pm

Geraldine (Dina) Whatnell, Nurse Practitioner Mental Health and Addictions Service Palmerston North Hospital

Theme: Health

Title: The Golden Years: Ageing and Down Syndrome

Audience: Parents, whānau, professionals – focus on adults who are 25+

 

Thursday, 28th October, 7pm – 8pm

Who: Libby Hunsdale, Michael Holdsworth, Rochelle Waters, Amelia Eades, Luka Willems, Lily Harper, Carlos Biggemann, Bradley Lewis, Jacob Dombroski, Alfie Linn

What: Meet the Stars!

Audience: People with Down syndrome, but others are welcome to join

 

Saturday, 30th October, 10am – 11am

Dr Maree Kirk, Director, STPDS NZ

Theme: Education/Wellbeing

Title: Making visions work – Social skill development for identity across the lifespan

Audience: Parents, whānau, professionals with a focus on school-aged children

 

UpsideDowns, New Zealand Down Syndrome Association, and Small Talk Therapy, are proud to bring you this free webinar on speech and language therapy for children and young people with Down syndrome.

Are you looking for ways to support your child’s speech during lockdown?

Are you new to speech and language therapy?

Have you been engaging with speech and language therapy for a long time but are looking for new ways to engage with your child’s communication journey?

Are you frustrated or confused by what public speech therapy is being provided? Are you keen to start with speech and language therapy but don’t know where to begin?

If you’ve answered yes to any of these questions, then this webinar is for you!

Fiona Kenworthy, a specialist in speech and language therapy for children with Down syndrome, Sarah Paterson-Hamlin, CEO of UpsideDowns, and Zandra Vaccarino, National Executive Officer of the New Zealand Down Syndrome Association, are answering questions from over 100 families, followed by a brief presentation by Fiona on some tips and tricks for lockdown SLT.

 

‘Stand Tall’ is a new app designed to dodge those tricky money situations – like getting to the end of the week and finding there’s no cash left for dinner.

The app is being developed by IHC and online gaming company InGame to make handling money easier for young people with disabilities who want to be independent.

“It’s a character-based game, so you choose your avatar – what you’re going to look like in the game,” says Phil Clarke, IHC Head of Library and Information Resourcing. “The background changes as you make decisions in the game and move around your flat and out to the gym or the movie theatre. As you move through the day there are various choices that have to be made.”

Phil says other characters or situations crop up that challenge what players plan to do and how they plan to spend their money.

Another key aspect of the game is shopping, particularly grocery shopping. Players are asked to decide what they’re going to eat.

Phil says each purchase has a consequence and players can see their available money dropping as they spend. But the consequences are not just monetary. The game has two bars for measuring progress – money and wellbeing. Players can go at their own pace and repeat stages, and a voiceover is available for people who can’t read the screen.

Phil says the idea of a resource to help young disabled people handle money was first discussed two years ago with Merrill and John Holdsworth. The Holdsworth Trust is a longstanding supporter of the IHC Library.

“We wanted to do something with teens with intellectual disability who were thinking of moving out of home. We knew that our initial audience would be people who were tech savvy,” Phil says.

The Holdsworth Trust donated $20,000 in seed funding to explore the idea of an online app with local digital technology company Optimation. Feedback was sought from people with intellectual disabilities and a parent of a teenager.

“It was teasing out what an online application would be and identify what some of the issues were for people who were looking to live independently,” Phil says.

“In the end we came up with the idea that we wanted something fun in the form of a game that would help people with money.”

A brief was written and IHC approached InGame, a gaming developer with a background in interactive training and educational games.

The new app will provide a fun way to help young disabled people handle money.

More money was needed to develop the game, and the timing was right. Post COVID-19, the Ministry of Social Development (MSD) had funding available for initiatives to help people with disabilities stay active and connected in their communities. IHC received $75,000 from the fund.

“We were successful up to a point. We got about half of what we were asking for. Funding from MSD is going to enable us to get to the point of a working prototype, but not a published app. But it will have all of the elements of the game that will be expanded in the published version.”

It will also be something to show potential funders. IHC is now seeking a further $100,000 to finish the project and to make the app free to download.

Please login or purchase a subscription to get full access to resources.

Please login or purchase a subscription to get full access to resources.

The New Zealand Down Syndrome Association is extremely proud of Michael Holdsworth becoming a member of the New Zealand Order of Merit in this week’s Queen’s Birthday Honours.
The NZDSA believes Michael is the first person with Down syndrome in New Zealand to receive this kind of honour.
Michael was recognised for his decades of work for Special Olympics and his advocacy work for full inclusion of people with Down syndrome in their community in New Zealand.
NZDSA President Kim Porthouse says that Michael has been a trailblazer for people with Down syndrome, both during his education in mainstream schools and his employment with IHC.
“Michael has been a great role model and has helped to remove a lot of barriers for people with Down syndrome,” says Ms Porthouse,
“Aside from that, he is also an accomplished musician and his piano performances have been a regular feature during the NZDSA National Achievement Awards at Government House,” says Ms Porthouse, adding that Michael himself was a recipient of the National Achievement Award in 2012.


“Every person with Down syndrome and their families in New Zealand will be extremely proud of Michael’s achievements and it is wonderful to see this recognised in the Queen’s Birthday honours.”
Michael represented New Zealand at the World Down Syndrome Conference in Dublin, Ireland, in 2009 to share his story of advocacy and inclusion.
He has been involved with Special Olympics for 32 years, as an athlete, advocate and as a Global Ambassador, and has been working for IHC in the library for almost 27 years, being the helpful voice at the end of line for people looking for resources.
The Special Olympics swimmer and skier says he is very honoured.
“With all the years of Special Olympics it has been the best thing of my sport,” he says.
The NZDSA President says that Michael is yet another example of the amazing things people with Down syndrome can achieve.
“More and more people and organisations are starting to realise what people with Down syndrome are capable off and what a great asset they are to their community.
“Michael has been one of the trailblazers and we are excited to see so many other young people following his footsteps.”

The New Zealand Down Syndrome Association has launched a wonderful new resource to fill a “huge void” for health professionals when dealing with new parents of a child with Down syndrome.

“We have received overwhelming feedback from parents and whānau that the health professionals they deal with in those whirlwind first days, often do not have the information they need, so we hope that this will help both parties fill this huge void,” says Zandra Vaccarino, the NZSDA’s National Executive Officer.

Vaccarino says that new parents deal with a variety of health professionals, from their midwife, early intervention team and paediatrician to the Plunket nurse and GPs.

“Often these professionals seem to think that one of the other will have given given parents and whanāu specific information on Down syndrome, but often the parents fall in a big information-free abyss,” says Vaccarino.

The National Executive says that the Down syndrome diagnosis is a surprise for many parents so they have lots of questions and need to learn more about Down syndrome as well as navigate where and how to access  support.

“Parents are looking for answers and support, but often the first conversations are unnecessarily stressful and very upsetting, when the health professionals have no information – or worse – provide misinformation,” says Vaccarino.

The new brochure, Tips For Health Professionals, provides professionals with resources, key contacts and useful tips on how to approach these vulnerable parents in a respectful and sensitive manner.

“In many cases, doctors, nurses or other support workers will have limited knowledge of Down syndrome and may not be aware of the amazing resources and support organisations available to the parents.”

A large section of the brochure covers the language professionals are suggested to use and what phrases to avoid, as they may be considered offensive or archaic.

The brochure also includes a milestone map specifically for children with Down syndrome.

“Usually parents are given a milestone list for typical children. Having a specific Down syndrome road map will provide parents with realistic expectations about their child’s development and hopefully avoid unnecessary concerns and frustration.”

Health professionals and anyone interested in people with Down syndrome can download Tips For Health Professionals, and other resources on the NZDSA website. The resources are free to download once you have registered your contact details.

 

 

The STRIVE self-advocacy team had another busy year and even the  lockdown could not stop their work.

STRIVE is a team of people with Down Syndrome who are a members advisory and leadership group who advise and support the New Zealand Down Syndrome Association board, and are ambassadors and advocates for people with Down Syndrome.

Judging by the STRIVE report to the AGM recently, the STRIVE team has developed its skills and influence significantly during 2019-2020.

The team regularly meets for Funshop, which are workshops with different topics, where guest speakers share their expertise with the young ambassadors.

The past year, the meetings covered Research, Advocacy, Writing Reports, Tips for Public Speaking and developing a Succession Plan.

This final subject is particularly important as some of the STRIVE team have been in their role for several years, and may want a change, while it is also important to get new people involved with fresh energy and ideas.

Once Covid 19 started affecting our day to day lives and New Zealand went into lockdown, the STRIVE team started using Zoom meetings.

The group got together on eight occasions between April and June to share their Covid 19 experiences and continue their other work.

Aside from sharing ideas with each other, the group has been very active in the wider community on behalf of the NZDSA.

Andrew Oswin attended the Disability Consumer Consortium in Wellington, Edward Borkin presented to Auckland Timber Industry as well as the Auckland Success in Schools workshops, Erin Smith was a Support Buddy on the Youth Development Camp and Andrew presented at a meeting of Down Syndrome Australia.

The group worked with the Health And Disability Commission on the script for digital resources to help people with disabilities, in which Duncan Armstrong featured as the lead actor.

On the international stage, STRIVE was part of the a feedback group for the Down Syndrome International research on Covid 19, as well being part of a disabled person-led monitoring programme  in Health and Wellbeing by the Donald Beasley Institute.

The STRIVE members have made huge progress as a group but are also proud of the successes they have enjoyed individually.

“On the 13th October 2020 I received and Achievement Award for the outstanding artistic achievement from Arts Access Aotearoa,” said Duncan Armstrong.

“I am taking up a leadership role in the kapa haka group in Invercargill and will be performing alongside other people with Down syndrome from the Invercargill Down Syndrome Group,” said Alexandra Hewitt.

Edward Borkin said will be going flatting which is a goal he has had before he even joined STRIVE, while Caroline Quick is a member of the EGL regional leadership group in Christchurch as one of three disabled representatives.

Caroline is also a member of the Disability Advisory Group for the Christchurch City Council, for which she is paid  a meeting fee.

In the far north,  Erin Smith is a youth leader in the Great Mates Social group.

“I am still a member of the Northlands DSA committee and I continue to enjoy my dance classes.  I have done training workshops at work and I am helping with the induction training at work and doing meet and greets,” says Erin.

Andrew Oswin said he really enjoys being a self-advocate and a member of STRIVE.

“I am happy and privileged and to have made a commitment of service to the Down syndrome community and country of New Zealand.”

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.