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.

 

Launching at the Tokyo 2020 Paralympic Games, WeThe15 plans to initiate change over the next decade by bringing together the biggest coalition ever of international organisations from the world of sport, human rights, policy, communications, business, arts and entertainment.

At a time when diversity and inclusion are hot topics, the 15% who have a disability want effective change to remove the inequality and inactivity. Like race, gender and sexual orientation, we want to have a movement all persons with disabilities can rally behind. A global movement that is publicly campaigning for disability visibility, inclusion and accessibility.

WeThe15 will shine a light on 15% of the world’s population. It will build greater knowledge of the barriers and discrimination persons with disabilities face on a daily basis at all levels of society. By doing so we will break down these barriers so all persons with disabilities can fulfil their potential and be active and visible members of an inclusive society.

For more information go to: www.wethe15.org

 

 

‘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.

There’s a huge gap at Hirepool in Lower Hutt where Colin Bailey used to work. He’s retired from the Hutt Road branch after more than 30 years on the job.

Colin’s farewell barbeque was an emotional day for everyone as Hirepool staff from across Wellington, along with Regional Manager Stuart Drew from Hawke’s Bay, came to say goodbye.

“He does leave a gap here – 100 percent,” Stuart says. “He swept the yard, kept it clean. No-one did it as well as he did. His work here was exceptional. He brought an excellent work ethic, a great sense of humour, a cheekiness.”

Stuart says he’ll miss Colin sneaking up on him and giving him a punch in the ribs. “It wasn’t just work; we were part of his extended family.”

He says employing Colin had been a success and Colin had worked to make it a success. “Years ago, someone came up with a great idea and he has stayed with us all that time. Colin still had to earn his way, which he did.”

Colin at his workstation. Photo: IHC

Wellington Area Manager Rod Groombridge worked with Colin for only seven or eight years but has known him far longer through Special Olympics New Zealand. Colin was a champion swimmer and Rod’s mother, Carol Groombridge, was the organisation’s first national secretary.

Rod says Colin was held in high regard by all the staff and treated as an equal. He says that was obvious in how many turned up to his farewell. A special sign reading ‘Colin’s Wash Room’ was hung over his work area.

“It was a funny old day. It was emotional really. We made that sign and we retired his broom.”

Colin had worked at Hirepool for longer than any of the team and through many of its former lives on the site – Projex, Hirequip and then Hirepool.

Hirequip used to hire out heavy equipment and when the trucks, diggers and huge road-sealing compactors came back clogged in mud Colin scoured their outsides with a water blaster and gave their cabs a dust-off ready for the next customer. He worked in all weather in gumboots, mask, leggings and a beanie to keep warm. In 2009 Hirequip presented him with a long-service award.

Hirequip’s successor, Hirepool, relocated the heavy machinery to another location and Colin switched gears. “I washed everything, the whole lot – washed all the gear, lawnmowers and rotary hoes.”

Colin started at Projex in 1985 or 1986, on work experience. He then took a year off to do the vocational life skills course at Petone Weltech before heading back to work.

Lee Bailey, Colin’s mother, says he got the job through IHC, working one day a week at the start. Before long “he was doing five days and he wanted to do six, but we put our foot down”.

This was a big commitment for Lee. “I would get up at 5.30am to get him to work. He went at 7am and was picked up at 2pm,” she says.

Last year, however, things changed. Although Colin’s job was waiting for him after lockdown, he was 59 and becoming increasingly tired. “Yeah, I would go home and sleep,” Colin says. As well, his father Ken died in September and Colin and Lee were having to adjust to the changes.

Lee, now 80, says she is glad to give up the early start. And Colin enjoys helping Lee around the house and mowing the lawns. He usually visits his old workmates once a week.

Source: IHC

 

NZDSA MEDIA RELEASE

The New Zealand Down Syndrome Association (NZDSA) urgently calls on the Government to invest in disability attitude training for health professionals.

A deeply disturbing article in the Sunday-Star Times yesterday clearly articulated and emphasised the traumatic discrimination many families experience during pre-natal screening tests, as well as the pressure to terminate their pregnancies by medical professionals.

In the story, one expectant mother explains that as she was heading into theatre to have her baby delivered by caesarean, she was asked if she would want the doctor to resuscitate her baby if it was required.

“The stories from these parents once again demonstrates how parents feel pressurised and that information is not presented in a balanced way, nor are expectant parents provided with up-to-date information about Down syndrome,” says NZDSA president Kim Porthouse.

Porthouse says that most health professionals have no first-hand experience of living with Down syndrome and may not even be aware of the unconscious bias they bring to conversations with expectant parents.

“Because they have never met any people with Down syndrome living amazingly full and rewarding lives, they often revert back to a clinical health discussion that presents a doomsday scenario of potential health risks that may never eventuate.

“The parents are in shock, and in many cases termination is presented as the only logical option before parents even have time to process all the information,” says Porthouse

The NZDSA has consistently called for the National Screening unit to invest into disability attitudinal training for health practitioners, as well as focused training on how to offer screening and share screening results in a non-directive manner and to provide accurate and up-to-date information on Down syndrome.

“We have been asking for this for many years, but it still has not happened. It is such a sensitive moment so it is also important to offer expectant parents non-directive counselling to help them make their decision, but this is not available,” says the NZDSA president.

Porthouse says that people with Down syndrome are valued members of every community they live in, but for some reason medical professionals are determined to ignore the social aspects of the discussions.

“Down syndrome in itself should not be a reason to terminate a pregnancy. The way a society thinks about people with disability underpins everything,” says Porthouse, who emphasises that the NZDSA is not challenging a woman’s right to make her own decision, “but we just want them to be able to make a fully informed decision”.

The discrimination and stigma in society does not stop once the baby is born, judging by the recent experiences of Bridie Allen, parent of two-year-old Sienna.

“After the birth of my daughter, some people asked if I didn’t get the screening, as if there had been some mistake,” says Allen.

Porthouse says that this type of question confirms the discriminatory assumption by many in our society that expectant parents would terminate.

“And let’s not forgot how hurtful this unconscious bias in society must be to people with Down syndrome, who are told that their lives don’t really matter,” says Porthouse.

Vincenzo Vaccarino is a young man with Down syndrome from Palmerston North and he says the pre-natal screening discussions make him feel “very bad and uncomfortable”.

“It makes me feel very sad to hear that parents choose not to have babies with Down Syndrome,” says Vincenzo, who married his girlfriend Rachel two years ago.

“I think it is cruel. People should consider the rights of people with Down Syndrome, we have the same human right to live, like every other person.”

 

 

 

 

 

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

IHC has launched an exciting new service that will be helpful to many families with Down syndrome, especially in the more remote parts of the country.

IHC has create a new volunteering role called, i-Volunteer, which is an extension of its existing volunteer friendships and our Volunteer Programme in where we connect people to form friendships and engage in their communities.

i-Volunteer is an digital version which links volunteers with people with intellectual disabilities, but the connection is online and by phone.

ICH has also extended the service to include family carers of someone with an intellectual disability, and that friendship is online and by phone as well.

The beauty of this new online volunteer role is that it allows IHC to target regions where it does not currently operate because they don’t have a Volunteer Coordinator on the ground.

The new service allows IHC to also target remote areas such as farming communities or the West Coast of the South Island.

I-Volunteer is all about shared interests and doing what each person enjoys and wants to do as a part of their friendship together.

Things that volunteers and their friends have talked about doing together are:

  • trying a new recipe and cooking it together over zoom
  • exercising and watching yoga YouTube videos together
  • playing multi-player online games such as Animal Crossing or Minecraft
  • knit or craft while on zoom or skype
  • ‘visit’ zoos (for example logging onto the live webcam on the San Diego zoo website); or
  • just chatting over the phone.

 

The initial interest among volunteers has been encouraging and has already resulted in several new i-Volunteers undergoing our orientation and training process in readiness for a friendship match.

Their interests range from travel, sports, learning Spanish, to video games, movies, creative writing and cooking and photography.

Their individual skills and experiences indicate they will be a committed and valued friend to a person with intellectual disability, or to a family carer of a person with intellectual disability.

IHC is looking for referrals from people who would like an online volunteer friend, so any families that might be interested please contact Belinda Donaldson at IHC 0800 442 311 or

[email protected]

 

 

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