Siblings together

We’ll probably never know for sure, but Shona suspects that her little brother, Roderick, might be the oldest person with Down syndrome in Aotearoa. Shona was two when Roderick was born, and the two have now been blessed with 75 years (and counting) of a loving sibling relationship which has helped shape the lives of many other families as well as their own, through the pioneering work of Hōhepa, which came about because of Roderick’s birth.

Shona and Roderick Stronach were born in the 1940s, and spent their early years with their parents and older twin sisters, Marian and Marjorie, on the wild and rugged Highcliff area of the Otago Peninsula, where the family had a clifftop farm. Shona only has vague memories of Roderick crawling along the passageways of that home, as both were still quite small when the family relocated to the gentler vicinity of Tomohawk Lagoon. 

“We bordered that lagoon and we had a wonderful life,” Shona recalls. “And of course there are a lot of stories about Roderick’s adventures there! He was a great one to run away. Once, we couldn’t find him and our mother found him right down the bottom of the next-door paddock – he was under the legs of a bull!”

It was a large family home, and Shona and Roderick spent much of their time playing together there. 

“We had this big veranda and we had this four-wheel jigger thing that I used to push him in. We created ghost trains and things like that,” Shona laughed as she recalled these early years together. “I was obviously a fairly helpful caregiver in terms of entertainment! Those were lovely memories.”

Shona can’t recall any negative attitudes towards Roderick – only the care of the neighbours. She also can’t remember her parents discussing the fact that Roderick had Down syndrome with her, or that she had much consciousness of it at all until the age of about 12.

“I do remember at early adolescence being self-conscious and realising he was different, and having to really grow to accommodate that over, maybe two or three years coming to terms with it.”

From his youngest years, Roderick possessed a friendly, warm, and radiant nature. “At family picnics you’d look around and say ‘Where’s Roderick?’ and he’d be off with the next group saying “I know you!” That’s lasted his lifetime those words – ‘I know you!’ – and that lovely friendliness and warmth.”

At that time, integrated or mainstream schooling weren’t options for Roderick, and so from the ages of seven to about ten, he attended Sarah Cohen School in Dunedin, a school established for pupils with special needs in 1926 that is still going strong today. Roderick was not academic, and though he learned some letters there he never became fully literate. 

In the background of the family’s lives, since the time of Roderick’s birth, their aunt, Marjorie Allan, had been pursuing ambitious goals that were inspired by her new nephew. At the time, Marjorie was overseas in London studying the work of Rudolph Steiner. When Roderick came along, she decided to move into training for therapeutic education and social therapy for people with intellectual disabilities based on Rudolph Steiner.  

Waipatiki picnic

“When Roderick was born she came back to meet him, then she returned to Europe and trained in the various Rudolph Steiner curative and therapeutic homes and schools where that work was developed and gathered up as much experience as she could. And then in 1956 she came back and toured New Zealand and lectured about the work, needing funds of course. When she was in Hawke’s Bay, a farmer called Lew Harris who had an intellectually disabled daughter, came forward and really wanted to help with the work, and was a really generous benefactor and donor.”

Thanks to Lew Harris (later Sir Harris), in 1957 the very first Hōhepa building was erected in Poraiti in the Hawke’s Bay, and became a residential school, initially for only nine children. One year later, a ten-year-old Roderick joined Hōhepa. After a short time in the school, he moved on to the newly acquired farm property in Clive, where he was to spend the next six decades of his life. 

Two years after Roderick made the move to Hawke’s Bay, Shona and her mother followed, their father having passed away. 

“My mother, Mary Stronach, took on the management and care of the house with the children and that freed up my aunt to concentrate on the valuable teaching and therapeutic work. My mother had a very important role holding the whole management together in terms of practicalities. She was good value! I went to Napier Girls High School but I lived there [at Hōhepa]. So it was an interesting time!” 

By this stage there were about 24 children, living in dormitories of six to eight, each cared for by women known as ‘dormitory mothers’. Though he was now living at the farm in Clive, Shona and her mother were thrilled to be reunited with both Roderick and Marjorie.

“You have your own life too by that age, so it was an interesting transition, but I was always very grateful for what I learned and received through Hōhepa. As a teenager you don’t always recognise it at the time! But I mean really it was wonderful. I got a chance to be one of the dormitory mothers on the weekend and I began to take responsibility which is good for teenagers.”

Once at the farm, Roderick initially lived at the main house and underwent some transitional schooling, alongside craft work, music, and therapies. At the beginning of his teens, he went to live at Anyon House, one of several small houses for around half a dozen residents at a time. At about this time, his mother and aunt purchased a beach house at Waipatiki that was to become a second home for the family.

“We’d all be there for weekends or holidays and my sisters would come down too. So this beach at Waipatiki was very special and a lot of the people who worked at Hōhepa shared that as well.”

Over the next sixty years, Roderick moved through various stages of life at the farm, always directed by his preferences and aspirations.

“He moved himself through his life stages at the farm, he was a farmer and a gardener, and used to get the milk and work the cows. Then he moved into the workshops and did woodwork and then there was the copper workshop. Each time he would let people know he wanted to move on.”

Highcliff farm

As he got older, Roderick struggled with the noise of the copper workshops, having never liked loud sounds. He chose to move on to the candle workshop, before eventually selecting what he termed ‘Quiet Care’ – the retirement home section of the Hōhepa community where he still lives. Though he has many interests, two in particular stand out to Shona that he’s been able to enjoy more, once moving into retirement.

“He carries an enormous interest of the officialdom of all the meetings that he’d been to with my aunt and the Trust Board and conferences. That was in him, and he’d take his bundles of papers and do his office work. In 2018, he was given honorary life membership to the Hōhepa Homes Trust Board.”

The other great love of Roderick’s life has been classical music – unsurprising when considering both his mother and aunt began their careers as music teachers before the Hōhepa journey began.

“He always wanted to be a conductor, if there were any musicians around or bands at the fair or anything, he would be up there conducting and he was good too. Music was one of his real loves and he still has that.”

Now an “elderly and distinguished gentleman”, for the past year or so, Roderick has been unable to weight bear, and prefers to spend most of his time in his room. “But he’s still very present. I was there last week and we had such a good time – the cat had got up on the arm of his chair and was determined to interject in our conversations. It was lovely, Roderick was right on the ball. But then the next day he was just so tired.”

Although less physically capable, Roderick’s mind is unaffected by dementia, and he retains the ability to “just radiate” that Shona recalls characterising him from his infancy.

“He never had any shyness. He would just go up to people. His “I know you”, that was to strangers, but people he knew he would say ‘Are you happy?’ He’s 75 and that’s the main thing that he says now – ‘Are you happy?’. It was like, when you reach out to somebody you’re telling them that you recognise them. So that’s followed him all his life. He has a lot of humour and I think I played up a lot with that too in terms of the fun and the games and the songs, you know. Even now he’s not so capable but he can come up with some incredible humour. He’s got a twinkle in his eye behind what he’s saying.”

Recent chat

Shona lives in Christchurch now, but the siblings have never stopped seeing each other multiple times a year, and their bond is indelibly strong. “When we’re together there’s no barriers between us, we’ve got a good rapport.” 

Just as Roderick’s arrival started her mother and aunt on an extraordinary journey that would ultimately found the beloved Hōhepa organisation, so too was Roderick always a part of Shona’s life pathways.

“As a 5-year-old I announced I wanted to be a children’s nurse when I grew up. And that resolve followed and shaped my career decisions throughout my life. I trained as a nurse and stayed close to the work with children. I lived up in Hawke’s Bay for ten years and for a good six of those I was working as a community nurse at Hōhepa.  I think the care model which surrounded Roderick very much influenced the course of my life.”

Today, Hōhepa has branches in Canterbury, Auckland, and Wellington, as well as the original community in the Hawke’s Bay incorporating both the original school community at Poraiti, and the 50-acre Clive farming and workshop community where Roderick lives. 

“Some might say that Hōhepa is an institution but it’s not. It’s a community of people and wonderful people that come and go from all over the world… The essence of Hōhepa is community and it still is, it’s not institutionalising. I know Hōhepa’s had to work very creatively to retain community but also to be out in the wider community. It has widened its web but it hasn’t lost its community sense.”

It’s a community – and now series of communities – that have made an immense difference to so many lives: residents, students, staff, volunteers, and Trustees, and without Roderick Stronach, who knows if it would have ever come to pass? Shona speaks with an incredible warmth, respect, and love for her mother and aunt, and for the many others who have worked to continue their legacy at Hōhepa. But most of all, her affection shines through when she speaks about her brother.

“I hope I’ve given you a reasonable picture of somebody who is very special.”

 

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About 50% of new-borns with Down syndrome have congenital heart disease. Often, this means surgery while still a baby, but the prognosis in New Zealand is excellent, and the overall risks of this surgery are no different from the general population according to research released last year in the Journal of Congenital Cardiology.  We spoke with Ashley Mills, the Hospital Family Support Co-ordinator for Heart Kids NZ, a fantastic charity that supports whānau throughout the country who have children with congenital and acquired childhood heart conditions, to find out more about their work and heart conditions. Their website is www.heartkids.org.nz  Many NZDSA members know first-hand the amazing work that Heart Kids NZ undertakes every day to ease a challenging journey. 

Where can babies receive heart surgery in New Zealand?
Starship Hospital is the only place in Aotearoa that does cardiac surgery on babies.

What professionals are usually involved in a paediatric heart surgery?
Paediatric cardiologists, surgeons, nurses, anaesthetists, radiologists and possibly some others depending on the circumstances.

Is there more than one kind of heart surgery?
Yes, there are lots of different types. There is open-heart surgery, where the chest is opened and the patient goes onto bypass, and there are other types of heart surgery and cardiac procedures that don’t require open-heart that can be done by cardiac catheterisation.

Your baby having surgery is of course a scary and stressful time for whānau – how do Heart Kids work with families around this time?
We connect with families in the community and/or the hospital, we are there to listen, to inform, to support, to walk alongside them whatever their needs are at the time.
This may mean a home visit before the surgery to help families prepare – with information, practical, emotional, and at times financial support. Or it could be a phone call, or it may mean visits from a hospital Family Support Taituarā (FST) on the wards in Starship who will connect, provide emotional and practical support, provide information, and be a friendly face who can listen and spend time if needed. We take into consideration the whole family as well, siblings for example. We can assist to refer to other agencies or support if this is required.

What can a family expect in the weeks following a surgery?
It really differs from family to family. Some are in hospital for many weeks or months before they can go home or transfer to a hospital closer to home, others will make a quick recovery and be home within days or weeks. Emotionally, we continue to support them during this time, and when they are home in the community Heart Kids NZ FSTs engage and offer support and connection in the local community. 

In hospital after open-heart surgery, there is a pathway: time in PICU immediately after surgery where they will be constantly monitored, the parent cannot stay overnight, then, when ready and stable, they are moved to Ward23 B to the intensive observation room (IOA) and the parent will still sleep elsewhere. Many medical procedures will happen over this time, baby may do well one day then have a setback another, re-establishing feeding can be problematic and take time, sometimes another surgery is needed, other times they progress straightforwardly, move to a single room where the parent can room in and then baby will eventually recover and go home. Families from out of town will sometimes be without their other children or have limited support from a second parent during this time, depending on their circumstances, and COVID-19, so are often quite alone which can be stressful and exhausting. Once they do go home the situation will vary, some can get back to a “normal” life pretty much straight away and others will have longer-term things that need managing.
There will be follow-up appointments, periods of rest and possible isolation, but depending on the surgery and procedure timing will be different for every family. 

What can they expect longer-term – do most babies make a full recovery?
Again it really differs from child to child, depending on the Congential Heart Defect (CHD), what surgeons are able to do and a whole raft of other factors. CHD can never be “fixed” but after some repair surgery e.g. coartation of the aorta or a VSD or ASD closure, many will live a full and normal life with only occasional cardiac check-ups needed or even be eventually discharged from Cardiology services if it’s deemed they no longer require follow up.
Many others will need continual regular monitoring. They may require further surgeries as they get older, others may have frequent check-ups, regular Cardiac Catheter procedures and other interventions to tweak previous surgery or deal with ongoing changes caused by the CHD such as valves repaired or replaced, arteries ballooned, or pacemakers put in.  This may require further trips to Auckland. Some will go years before needing follow up and never need any other intervention. Feeding and trying to gain weight can be an ongoing issue when home awaiting the next surgery. Cardiac babies may get complications if they get something like a cold so this can impact on the family and how isolated they may need to be. I can say that many of them, despite their condition, live life to the fullest and have resilience and attitude that sees them get the most from life!

What is some good advice for parents expecting heart surgery for their little one?
Ask all the questions that you need answers to in order to make yourself feel comfortable – this will vary from parent to parent. Be prepared that things will change and change again, that it’s not always possible to have all the answers beforehand, plans and schedules can change, and taking it day by day is the only way to do it.
Be reassured that we have amazing, dedicated, world-class surgeons in Starship Hospital, and that everyone involved in the team will do their absolute best for your baby.
Ask your friends and whānau for support – and accept it – it can be a long road ahead for some and having support in place can ease some of the stress.

Do you have a number one recommendation for something to bring into the hospital?
Something of comfort for your child like a favourite toy or blanket (or device they can look at in bed to distract).

What other types of support can Heart Kids provide?
All kinds of things! We offer camps, forums, connections in the community with other heart families, education, advocacy, bereavement support, and antenatal support. Our website is a great place for families to find more information, resources, connections, news and heart stories from across Aotearoa:
www.heartkids.org.nz 

 

Reference:
Delany, D.R., Gaydos, S.S., Romeo, D.A. et al. Down syndrome and congenital heart disease: perioperative planning and management. J Congenit Heart Dis 5, 7 (2021).

Media release – World Down Syndrome Day highlights barriers to full inclusion

New Zealanders with Down syndrome continue to face unsurmountable barriers stopping them from being fully included in their community.
“The reality for people with Down syndrome in 2022, is that they still face daily battles to fully participate and contribute to society,” says Zandra Vaccarino, the National Executive of the New Zealand Down Syndrome Association (NZDSA).
The global theme for this year’s World Down Syndrome Day (WDSD), on March 21, is #Inclusion Means.
“The theme was chosen to make people consider and understand what full inclusion actually means,” says Vaccarino.
“Inclusion can mean a lot of different things for people with Down syndrome, but also for the people around them. What inclusion looks like should always be considered in the human rights framework and then one should explore how one can be inclusive in all aspects of life including employment, education, sport, arts, community participation and social events.”
Vaccarino says that by signing the UN Convention on the Rights of Persons with Disabilities, New Zealand has obligations to uphold the intent of the UNCRPD but this has not translated into full community participation, or the privileges and rights other Kiwi citizens may take for granted.
“Inclusion is not just having people with Down syndrome present in our schools, our streets or our malls. It means that we need to give them equitable access, so they have real access and support where needed to fully participate in all parts of our society,” says Vaccarino, who hopes that this year’s campaign will encourage New Zealanders to take stock and see how they can better include people with Down syndrome in their schools, work places, sports teams and social events.
This year, Covid 19 restrictions have again stopped Down syndrome groups around the country from hosting their usual WDSD celebrations, so the NZDSA has pulled together a mega-online community event, The Big Connect, which on Monday night will host a who’s-who from the disability sector.
The Big Connect will be opened by the Minister for Disability Issues, the Honourable Carmel Sepuloni, before she hands the stage to the President of Down Syndrome International, Bridget Snedden, and Paula Tesoriero, the Disability Rights Commissioner.
Snedden and Tesoriero will then be part of an intriguing panel of high-profile experts and advocates around human rights, education, employment, sports and arts to discuss the WDSD theme #Inclusion Means.
Vaccarino says that Covid restrictions last year forced the NZDSA to come up with the first Big Connect, which turned out to be a huge success.
“Last year, over 100 families from all over the country joined us and they were all really excited about being connected.
“People with disabilities are often more isolated than others during the pandemic, so we really hope that we get an even bigger turnout this year.”
“We are incredibly proud and grateful to host such an amazing group to share their ideas and experiences around inclusion and we hope the discussion will be an inspiration for people with Down syndrome and the wider community,” says Vaccarino.

For more information, contact Zandra Vaccarino on 021-1587150.

You do not want to miss New Zealand’s biggest Down syndrome video call on March 21.

The theme of this year’s World Down Syndrome Day, is “What does inclusion mean?” which we would also like to expand to” What do I want in the future?”.

This year the NZDSA is calling on you to tell us what inclusion means to you or what you want for your future.

We invite people with Down syndrome, their whānau, carers, support people and anyone else in our community to share with us your thoughts and aspirations — this could be by sending us a video, a written message, a photograph or even a drawing!

We will be sharing your stories on social media over the next three weeks and asking a few of you to speak at The Big Connect.

You can send the NZDSA messages on Facebook or email us at [email protected]

While our people are spread throughout all corners of Aotearoa and unable to connect in person, we believe The Big Connect will be a great way to celebrate our community and ensure we are all together to celebrate World Down syndrome Day.

The Big Connect is Back – Monday 21st March 2022 at 7pm

In 2021, the New Zealand Down Syndrome Association hosted the first BIG CONNECT, the country’s largest zoom call, to celebrate World Down Syndrome Day. Join us on Monday the 21st March at 7pm for another star-studded zoom event as we explore Inclusion means# the 2022 theme for World Down Syndrome Day.

Topic:     Big Connect

Date:    21 March 2022

Time:    07:00 PM

Join Zoom Meeting

Meeting ID: 861 9763 8020

Passcode: 988116

Other Online Events to Mark World Down Syndrome Day

Down Syndrome and Autism Spectrum Disorder – A dual diagnosis. Thursday 24th March at 7pm 

This session will include the launch of a new digital resource “Down Syndrome and Autism Spectrum Disorder”.  This digital resource is presented by Geraldine (Dina) Whatnell and she provides an overview, offers information, shares insights and demonstrates best practice when supporting people with Down syndrome and Autism Spectrum Disorder.

This online session will also include a Q&A time with Geraldine.

Geraldine Whatnell is the Nurse Practitioner Mental Health and Addictions Service, Palmerston North Hospital. Geraldine brings with her nearly forty years of professional skills and knowledge in the specialist area of developmental disabilities (intellectual disabilities and/or Autism Spectrum Disorder) and mental health.

Topic: Down Syndrome and Autism Spectrum Disorder – A dual diagnosis

Date:   24 March, 2022

Time: 07:00 PM Auckland, Wellington

Join Zoom Meeting

Meeting ID: 861 9318 1571

Passcode: 034268

Members of the NZDSA are invited to relive the best parts of the Virtual Down Syndrome Conference we hosted in October to celebrate the NZDSA 40th anniversary.

During the conference over 700 individuals and households joined one or more of the 22 events and presentations.

The 34 speakers hosted a staggering 2748 minutes of webinars, Q&A sessions and social gatherings.

Usually, organisations would charge large amounts to be part of such a comprehensive event, but the NZDSA decided to make the conference accessible as possible.

If you or your family enjoyed the conference and gained benefit from the information shared, we would like to ask you to show your appreciation by donating to the NZDSA.

As you can imagine, hosting the conference demanded significant resources from or staff, and we hope you will continue to support the NZDSA to enable us to host more events in the future.

If you missed the conference, the NZDSA has recorded some of the key webinars which are now available to view on our website.

The resources you find on the website are:

The Golden Years: Ageing and Down syndrome

An introduction to the needs of the older person with Down syndrome and how this may affect their health and wellbeing alongside the supports they may need.

Relationships – Theories and Practicalities

This session deals with a variety of issues that face everyone trying to create new relationships, but may be particularly challenging for someone with Down syndrome.

Supported Decision Making – a Human Right

This workshop will help participants to gain a greater understanding of the national and international legal context of Supported Decision Making, who may require decision making support, and the key principles and strategies for extending decision making support

Making visions work

Social skill development for identity across the lifespan.

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

Fiona will share tips for whānau, based on the latest research, about how whānau can set their child up for literacy success.

Individual Education Plan – The capabilities approach

The capabilities approach to a structured plan to explain, recognise, and deliver on all learning opportunities to fulfill goals and achievement for children and young people with learning disability and Down syndrome.

 

Families and whānau of people with a disability have expressed relief, hope and opportunity at the announcement of Ministry for Disability last week.

“The Family Alliance is delighted that disabled people and whānau will guide the establishment of the Ministry,” says Zandra Vaccarino, speaking on behalf of the Family Alliance.

“We welcome that disabled people will have a key role in the Accessibility Governance Board, but want to highlight the crucial role of family and whānau as the strongest advocate for their family member, so it is essential that these allies have a voice on the Governance Board,” says Vaccarino from the New Zealand Down Syndrome Association, one of the partners of the Family Alliance, alongside Care Matters,  Parent 2 Parent, Standards and Monitoring Services and other informal networks.

“The current system causes stress for many families and they have been calling for change for many years,” says Vaccarino.

“Families and whānau have advocated alongside disabled people for decades calling for an independent Ministry for Disabled People, so we welcome the announcement of the new Ministry for Disabled People, and this could address the inequalities and inaccessibility that disabled people continue to face in the current health and disability services,” says Vaccarino.

“It is also important to recognise that not all people with disabilities are able to advocate for themselves, so it is essential that the role of family and whānau advocates are recognised,” says Vaccarino.

 

People with learning disabilities, high and complex support needs and communication challenges are the most marginalised members of our community and Vaccarino says we all need to ensure that their allies who can communicate their needs are able to be part of the co-design process.

Tina Lincoln from Care Matters says that that families are ready and able to partner with disabled people, Māori, and the Crown to make this work.

“The Ministers have listened to our communities and understand the importance of working in partnership,” says Lincoln.

“We believe the new Ministry will create increased opportunities for families and whānau supporting their family members with disability to continue to embrace positive and creative way to work towards a good life.”

Lincoln says that last week’s announcement will hopefully be a move away from a deficit-based system and into a dedicated Ministry that empowers people with disabilities.

 

“In our vision an independent Ministry will have experience and knowledge and work together with disabled people, families, and whānau to enhance the lives of people with disability, which in turn can enhance the lives of the wider family and whānau,” says Lincoln.

She says that an independent Ministry will help ensure the ongoing ‘System Transformation’ will align with the Enabling Good Lives approach.

Enabling Good Lives (EGL) is a new approach to supporting disables people that offer greater choice and control over the supports they receive, so they can plan for the lives they want.

Disabled people and families have been working on the Enabling Good Lives approach for nearly a decade, starting in 2012.

Lincoln says there are multiple examples of where families in the demonstration sites describe the benefits of the Enabling Good Lives approach.

“The national Enabling Good Lives roll out will ensure equity regardless of where people live. Families are celebrating the opportunities to remove barriers and create solutions to live they can create.

“The Enabling Good Lives approach can be life-changing when the Enabling Good Lives principles and approach are applied and in the forefront of our thinking and how we do things.”

Lincoln explains that a key principle of Enabling Good Lives is to start early, and in the early years it is families and whānau that hold the vision for a good life.

 

“We congratulate Minister Sepuloni and Minister Little’s for their courage.”

 

 

 

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.

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 .

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.