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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.


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.


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

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.




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


‘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.

The IHC Advocacy team explains why the right to make your own decision is so vital to people with Down Syndrome.

Being able to make our own decisions is a key part of how we all live our lives.

From choosing between whether to have jam or Marmite on your toast, to deciding on who to live with and how to spend your money – these are all decisions we often take for granted.

However, people with intellectual disabilities still face many barriers when it comes to making decisions for themselves and having those decisions acted on.

And for parents or caregivers whose child with an intellectual disability is about to turn 18, the question of what happens next is one we receive often.

How do we best support our adult sons’ and daughters’ decision making?

How can we best support and protect our adult children when they need other people’s help to interpret and represent their choices? And how do we get these decisions recognised as valid decisions?

IHC has always advocated for people with intellectual disabilities to have as much of a say as possible in how they want to live their lives – and naturally there are times when assistance is needed.

Supported decision making empowers people with intellectual disabilities to make their own decisions on an equal basis with others.

It is a right under Article 12 of the United Nations Convention on the Rights of Persons with Disabilities. It means having the right to self-determination, being able to make decisions and having the proper support to do so – and in those instances there are a series of relationships, practices and arrangements put in place to achieve that.

Typically, other people’s judgement of an individual’s capacity and ability to make decisions determines the extent to which they allowed to make their own decisions.

There is a general misunderstanding about intellectual disability and capacity, with views that capacity is fixed and that unwise decision making indicates a lack of capacity. If a person with an intellectual disability makes a poor decision, they can be viewed as being incapable of making future decisions – but, like building a muscle, the more someone has the opportunity to do something, the better at it they become.

The support a person needs will look different for each individual and can change with each decision being made. Knowing and understanding the person who is being supported is critical, as is ensuring that the right support people are involved for specific decisions being made.

In New Zealand, the Family Court authorises legal orders, such as welfare guardianship, so that others can make decisions on the behalf of someone with an intellectual disability – this is substitute decision making. This legal framework has been determined by the United Nations Committee on the rights of Persons with Disabilities to be inconsistent with the spirit and intent of Article 12, which requires a shift towards a supported decision making legal and practice framework.

This shift will require changes in practice in many areas, including how people with an intellectual disability can make decisions around health, living arrangements and finances.

In many instances, we’ve heard of bank staff insisting that families apply for welfare guardians to support their child with finances.

Another issue that can create difficulties for people with intellectual disabilities who are subject to Court Orders is that there is no training given to welfare guardians and property managers, nor any monitoring of their performance to ensure people with disabilities are not being taken advantage of, or are being misrepresented.

New Zealand’s progress on implementing recommendations set out by the UNCRPD is up for review this year, and the question of whether people with intellectual disabilities have the right supports and safeguards to make their own decisions will be evaluated.

It is crucial that we have laws, policies and practices that support people’s rights to make decisions and have those decisions respected.

By Nan Jensen

The Family Court has the power to appoint a person to make decisions for a person who lacks the capacity to understand the nature and consequences of their decisions and/or the ability to communicate their decisions.

Roles can be allocated for very specific decisions or for a broad range of decisions. The most common roles are Welfare Guardian (to make decisions about the personal care and welfare of another person) and Property Manager/Administrator (to make decisions about the property of another person).

Welfare Guardian and Property Manager

Families of people with disabilities need to be aware of the legislation around this even if they choose not to take advantage of it.

Not all disabled people can have a decision-maker appointed under this legislation – they need to meet the capacity threshold (or rather lack of capacity threshold).

The right to make your own decisions is a core element in the United Nations Convention on the Rights of Persons with Disabilities.

The Convention protects the rights of a person to make their own decisions, and states that ‘supported decision-making’ is the correct way for decisions to be made for people with disabilities who may have capacity issues.

Many disability groups oppose the current legislation as they believe it interferes with that right. Our government has claimed that the current legislation (which ironically is called the Protection of Personal and Property Rights Act) accords with the convention, because of the following provisions:

  1. The requirement that the court ‘make the least restrictive intervention’ in the person’s life and ‘enable or encourage that person to exercise and develop such capacity as he or she has to the greatest extent possible’ (s. 8)
  2. The duty of a Welfare Guardian to have as ‘the first and paramount consideration’ ….’the promotion and protection of the welfare and best interests of the person for whom the welfare guardian is acting, while seeking at all times to encourage that person to develop and exercise such capacity as that person has to understand the nature and foresee the consequences of decisions relating to the personal care and welfare of that person, and to communicate such decisions’ (s. 18(3))

In my work as solicitor I advise families about this law and I make applications under the Act, if that is what people want to do and if their family members fit the criteria. I make people aware of their obligations if they do get appointed to a role under the Act.

In an ideal world, we want every person in New Zealand to make their own decisions. Some disability groups seem to encourage families to make financial and life decisions informally with the consent from their family member with a disability and without having to resort to a guardianship arrangement.

In my experience, it is getting harder to navigate the major issues

Informally. New Zealand is becoming more litigious and there are more and more rules and accountabilities in organisations, as is appropriate. The Privacy Act for example, can make it difficult for families to get information or be involved where there is no Court order in place.

Sadly, I run into too many situations where people are abused or neglected, either financially or otherwise, sometimes by their own family members. So in my view, it is appropriate to have a court-appointed, official role that allows scrutiny of how that role is being carried out. Informal arrangements do not allow for this.

Having said that, I do not think the current legislation has enough safeguards – so people may or may not be informed of their obligation to consult with their family member and to consult them and encourage them to make their own decisions – and even if they are, there is no mechanism to check that they are actually doing it.

On the other hand, I do not believe we have enough safeguards for people with disabilties in general, whether they have a decision-maker appointed under this legislation or not.

Some disability activists however, argue for ‘the dignity of risk’ and they want fewer interventions in their lives. I have sympathy for this view – the issue however is that there are many different types of disabilities and some people are more vulnerable than others.

The issue is finding a balance between freedom and protection – because the more freedom, the less protection (this is true about everything in life) and clearly the level of protection needed and wanted will vary from one situation to the other.

I have seen cases where the courts have allowed welfare guardians to treat their person with a disability like a child and prevent them from being independent, but I have also seen this happen in situations where there is no welfare guardian. As mentioned, I have also seen abuse and neglect both with and without a Court appointment.

I am afraid there are many people with disabilities who are being abused or neglected and nobody knows, because they are ‘off the radar’ of any organisations,

including the courts.

New Zealand does not have a Public Guardian (as in Australia), or an organisation along the lines of Age Concern or Oranga Tamariki for people with disabilities. I am sure there are people who know abuse is happening but they don’t know where or how to report it.

In this context the appointment of a Welfare Guardian or other role under the legislation at least provides a regular assessment, as it is reviewed every three years. The review is the time when the court should be checking that the appointee is carrying out their role appropriately.

Reviews normally take place at 3-yearly or 5-yearly intervals but a review can take place at any time, if someone applies to the Court and the Court grants their application for review. If there was a Public Guardian, that office could request a review if an average citizen was unwilling to do so but had a concern.

In my view, there are two options for improvement:

Firstly, we can modify the legislation to ensure that appointees are aware of their responsibilities and to check that they are doing their job. This of course will upset families who have looked after their child for 18 years without any issues. The fact is though that when a person becomes an adult, the law is and should be different, even if the person operates at the level of a child. I believe combining this with the appointment of an Office of the Public Guardian would work well.

A second option, which exists in Canada and is being looked at in Australia and other jurisdictions, is to have a system of registering support people (supported decision-making), so people with a disability still have the legal decision-making power, but they or the court are able to officially appoint someone to support them. This way there is a record of who is appointed and a way to review those appointments if there are issues or concerns. A Public Guardian or other reporting mechanism would be useful here too.


Enduring Powers of Attorney

Enduring Powers of Attorney are documents where you appoint someone to make decisions for you about your personal care and welfare and/or property (there are separate documents for each). You need to have the capacity to make these. These can be helpful for people who can give their own medical consent and make their own personal care and welfare decisions but need help with managing their money, because the Property one can be activated while the person has capacity.

There is currently a government initiative to get more people to do these, particularly older people.

In my practice I have witnessed powers of attorney for people with Down Syndrome and other intellectual disabilities. I do this in cases where I am certain that the person understands enough about the document to satisfy me that they could sign it, but I doubt many other lawyers are willing to do the same. I will often get a letter from their GP before I witness the documents to ensure that they support my view.

Enduring Powers of Attorney are for people who have at least some capacity to understand their decisions, and they need to understand the significance of giving Power of Attorney.

I believe everyone with capacity should have these in place. I had all of my children do them as soon as they turned 18. Anyone can have an accident or a medical event that reduces or removes their capacity.

If you have not done powers of attorney and you do lose capacity (as many people do as they get older), then someone in your family will have to apply to be your welfare guardian and property manager. I am aware that I sound like I am trying to sell my services when I say these things, but in my view these documents are like insurance. You hope you will never need them, but if you don’t do them your family may wish that you had.

Enduring Powers of Attorney are prepared and witnessed by a lawyer. Unlike Welfare Guardianship and Property Management, no Court order is required and there is no expiry period.

Nan Jensen is a consultant with Quinlaw Solicitors