Actor Duncan Armstrong stars in a series of new videos released by the Health and Disability Commissioner and the Nationwide Health and Disability Advocacy Service to help people with learning disabilities think about their own experiences with using disability services and their rights under the Code.

There are five videos, each with a different story. The videos look at how Sam, played by Duncan, and his friends use disability support services and how they resolve any concerns that they have.

The videos were produced by Film for Change Aotearoa and made locally in Wellington with Wellington actors, including people who use disability services.

Each video has a closed captions option, and the closed captions and slides have been transcribed into Word documents. Deaf Aotearoa has created New Zealand Sign Language (NZSL) for each video.

 

Down Syndrome International recently hosted a webinar to provide information and receive feedback about the first international guidelines for educating learners with Down syndrome.

If you missed the webinar but are interested in learning more, you can watch the webinar here.

Down Syndrome International (DSi) has developed these guidelines, using experts and existing research from around the world, to enable teachers to help their students with Down syndrome reach their full potential.

NZDSA National Executive Zandra Vaccarino thinks these guidelines are a game changer and will become an invaluable asset to New Zealand educators.

“We know that educators in New Zealand will welcome this resource as there is a great need for expert guidelines to  teach students with Down syndrome,” says Mrs Vaccarino.

“These new global guidelines have pulled together the best practices available around the world and will facilitate the realisation of the right of people with Down syndrome to an inclusive education and lifelong learning.”

New Zealander Bridget Snedden, Vice Chairperson of DSi says these guidelines have been developed to improve the availability and quality of education for people with Down syndrome around the world.

“We need to raise the expectations among educators of what young people with Down syndrome are capable of,” says Snedden who was closely involved in developing the guidelines.

To download the guidelines, please go to:

https://www.ds-int.org/Handlers/Download.ashx?IDMF=7a4a9546-287d-49c1-8573-888319d7310f 

NZDSA Media release

The New Zealand Down Syndrome Association (NZDSA) has welcomed the first international guidelines for educating learners with Down syndrome which were released last week. These guidelines are an important document that will inform the education needs, inclusion and life possibilities of learners with Down syndrome.

Down Syndrome International (DSi) has developed these guidelines, using experts and existing research from around the world, to enable teachers to help their students with Down syndrome reach their full potential.

NZDSA National Executive Zandra Vaccarino thinks these guidelines are a game changer and will become an invaluable asset to New Zealand educators.

“We know that educators in New Zealand will welcome this resource as there is a great need for expert guidelines to  teach students with Down syndrome,” says Mrs Vaccarino.

“These new global guidelines have pulled together the best practices available around the world and will facilitate the realisation of the right of people with Down syndrome to an inclusive education and lifelong learning.”

New Zealander Bridget Snedden, Vice Chairperson of DSi says these guidelines have been developed to improve the availability and quality of education for people with Down syndrome around the world.

“We need to raise the expectations among educators of what young people with Down syndrome are capable of,” says Snedden who was closely involved in developing the guidelines.

Snedden’s own son Alex is 32 now, “and I think if we had these guidelines when he was at school then it would have made his full inclusion a more positive experience for everyone and would have increased the expectations of teachers and supported his inclusion at school”.

Vaccarino says that  the need for international guidelines has been a hot topic at the international conferences the NZDSA has attended.

“I was fortunate to attend, along with other New Zealand parents and a host of representatives from all over the world, a vital session to discuss  issues with inclusive education and to find solutions.  The outcome was the need for a document that would provide guidelines that could be used worldwide,  so we celebrate this resource that DSI has published.”

According to Snedden, Down Syndrome International sees full inclusion of students with Down syndrome as the key to successful outcomes at school and in life.

“Even in 2020, too many New Zealand schools will direct students to learning support units, essentially segregating them from the peers in their community, without fully exploring opportunities to adapt the curriculum.

“There may be good reasons to do so, but too many students end up going through school without interacting with their non-disabled peers, not giving all children the opportunity to learn from each other and the skills they need when they finish school to participate in the wider community,” says Snedden.

“We hope these guidelines can facilitate greater independence and future employment.”

To download the guidelines, please go to:

https://www.ds-int.org/Handlers/Download.ashx?IDMF=7a4a9546-287d-49c1-8573-888319d7310f 

Media release from Associate Minister of Education Tracey Martin

Students with high and complex learning needs, as well as their teachers and parents, will benefit from a substantial increase to Ongoing Resourcing Scheme (ORS) funding, Associate Education Minister Martin announced today.

“Nearly $160 million will go towards helping these students by lifting their base support over the next four years, and by providing extra short-term support in response to the impact of COVID-19,” Minister Martin said.

Hon Tracey Martin

The baseline increase of $128 million over four years will support students who are ORS verified by increasing the average ongoing funded teacher aide hours per week from 10 to 13 for high needs students and 17 to 20 for very high needs students. This increase will take effect from the start of term three 2020.

The actual number of teacher aide hours allocated to individual students will be based on individual need. This will enable these students with complex needs to have ongoing support to increase attendance, participation, engagement and progression.

“In addition to this, an extra $31 million response fund will be available from now until June 2021 for schools to employ additional teacher aide support for those ORS students who need extra help on their return and transition back into school due to COVID-19,” Minister Martin said.

“After an extended period away from their learning routines due to lockdown, some students who are ORS verified may need additional teacher aide support to strengthen their attendance, participation, engagement in learning, and to reduce the stress and anxiety of transitioning back to school.

“For example, I am aware that some students’ transition visits have been delayed as a result of lockdown. The response fund will assist students in these types of situations.”

The response funding can only be used for teacher aide hours to the end of June 2021. It will enable schools to employ up to an additional 1,025 FTE teacher aides for one year.

To speed access to the fund schools will complete a simple application for their ORS verified students.

Over the more than 40 years of its existence, the Champion Centre has helped transition many children with Down syndrome into early childhood centres and schools. Some teachers have good knowledge about the needs of children; but others have questions and concerns about how best to support them in the learning environment. As a result of many conversations with teachers, the Champion Centre has developed a small booklet which it offers to early childhood centres and schools to help them understand how best to support children’s learning. Below is a sample section from this booklet to give a flavour of the information and advice being offered.

Supporting learning

Learning is rarely a straight path for any of us; but for children with Down syndrome it often seems to be particularly circuitous. Learning happens because new connections are being formed in the brain. And in the brains of children with Down syndrome forming these connections can take longer and can need more repetition and reinforcement to be maintained than in the brains of typically developing children. As a result, skills may appear and then apparently disappear, only to reappear later. Sometimes this is the result of periods of poor health or the transition to a new environment; but at other times, learning requires not just the ‘addition’ of new information but the ‘reorganisation’ of existing knowledge and this can temporarily or permanently dislodge things that have already been apparently learned. As each new skill or piece of information is learned, it is important that existing ones not be forgotten, but reinforced through activities that integrate the old and the new.

An ability to sequence and to process sequences (of words, of numbers, of activities and ideas) is at the core of learning, and children with Down syndrome find sequencing challenging. They process more slowly than typically developing children, and their challenges with memory mean they often forget earlier parts of the word, sentence, instruction, or idea by the time they reach the end. In other words, because auditory processing is poor, it does not support memory (with internal speech) the way it does for most typically developing children.

Here are some strategies that teachers and other learning support personnel can use to help children learn in the classroom:

  • Use visual schedules to help the child understand the routines of the classroom and the sequence of activities expected
  • When giving instructions or directions present them both orally and with a visual support (e.g., a picture or a written word) and make sure they are simple and step-by-step and that the child is watching, listening and attending. Be aware that children with Down syndrome may process only part of the instruction and appear to have done the opposite of what was intended (e.g., “don’t cut it” may be processed as “cut”). Alternatively, if they did not understand they may simply copy another child.
  • Help children understand the steps involved in a complex task and help them think about those steps, perhaps by saying “What do I need to do before….?” “What do I need to do next….?”, “What do I need to do after….?” In this way, they will begin to understand the structure of the task (beginning, middle, end).
  • Remember that children with Down syndrome are not as flexible in their thinking as other children and will have difficulty revising their approach to a task already learned. Where possible teach to the endpoint you want to achieve; breaking the task into manageable components.
  • Limit the distractions around the child while still keeping them as part of the classroom. Think about providing them with only the tools (pencils, ruler, etc.) that they need for the job at hand.
  • While Buddy systems are important for social connection, other young children will not understand the challenges of learning for children with Down syndrome, so limit peer teaching/learning expectations.
  • Be overt with the language of “learning to learn” is important. For example, when selecting a book it is important to talk about the concept of reading for meaning e.g. “Let’s find out what this book is about…” “What will happen next?” “What was this book about?”
  • Let them use a keyboard if they find this more effective than using a pen or pencil that requires more fine motor control that they are able to manage.
  • Make sure you know whether they are staying on task, perhaps by having them working near the teacher. Help them avoid paying attention to irrelevant details of the task.
  • Give them time to process; support them when they make mistakes; and help them achieve a sense of success and achievement.
  • Make sure they know that you care that they do their best. Give praise and encouragement and expect to repeat verbal prompts and reminders even if they have a visual prompt as well.
  • Connect with the child’s parents and make sure you have good communication so that the parents understand what the tasks of school are and can support the child to practice them at home.

Motivation for learning depends on interest and meaningfulness. Ensure tasks are meaningful and where possible, playful, so that children are engaged and motivated to participate.

The above is a section on Supporting Learning from a short booklet developed by The Champion Centre, for early childhood and primary school teachers entitled “Helping Children with Down Syndrome Reach Their Full Potential”.

The full booklet has sections on supporting language and communication, supporting learning, supporting behaviour, and supporting children as people.

A printed copy is available from the Champion Centre for $9.50, including postage, payable by cash or via direct deposit. Please contact [email protected] for more details.

In her third article on education, Margi Leech provides tips for families to get their children truly included and get the most of out their time at primary school.

Children and young people learn best when they feel accepted, when they enjoy positive relationships with their fellow learners and teachers, and when they are able to be active, visible members of the learning community.

Enacting Te Tiriti o Waitangi principles, inclusive learning communities do the right thing by learners and communities (tika), with integrity (pono) and with care and sincerity (aroha).

Some schools are following an approach, the Universal Design for Learning. You can read more about it on the TKI website (www.inclusive.tki.org.nz). The guidelines enable teachers to understand and practise inclusive education. These key features are seen in every school and provide multiple means of:

  • Engagement – the ‘why’ of learning
  • Representation – the ‘what’ of learning
  • Action and expression – the ‘how’ of learning

We know from our experience that schools and teachers are on a continuum of practising these beliefs. This information will help you in your discussions with schools especially in writing IEP goals.

Learning is an interaction between the individual and the environment and people around them. Every person is therefore a valid learner. A teacher sets the stage for each child to learn, not trying to make the child learn in the setting that suits the teacher. The learning goals need to be really clear.

I think about how I can be flexible to enable children to access their learning. (Jon Munford, Kennedy Krieger University)

With Universal Design for Learning, there isn’t just one way to do it. As we think about design in terms of what a learning environment could look like- if we just embedded that slight shift in language – we are already embedding some flexibility.

Comfort is another factor in learning. Are the children in a physically comfortable environment? Are the chairs and table heights suitable? I can also ask, “Does this work or learning matter? Do students feel motivated by and connected in this work?”

Developing relationships and demonstrating those relationships within the classroom space is important. The teacher is key in helping students to get to know one another and support positive interactions within the classroom.

So, in your discussions with your schools talk about these points and clarify how the teacher will meet your child’s needs.

In my previous article I shared activities and skills you can develop with your child before school. Many of our children begin at five knowing more than their peers. This gradually changes through the months and years that follow.

Supported learning is really paramount to enable our children to be at the same table as their peers rather than being in a separate environment. There are other factors with our little people that means that for some of the time, they do learn best in a small group in a quiet place better. In both places, explicit teaching is important.

What can I do as a parent supporting the learning?

  1. Provide a good breakfast with lots of protein to sustain their hard work throughout the day.
  2. Ask the teacher for a goal for each week to do the same at home.
  3. Use a communication notebook. Realise that a teacher may not have time to write in it every day. The classroom is a busy place!

Maths

Maths is a language enabling us to talk about and record relationships and explore patterns.

  • Play with construction blocks, building and taking apart.
  • Play with inset puzzles, jigsaw puzzles, matching outlines and filling them up with blocks or fabric.
  • Have fun with dramatic/pretend play to build the understanding of ‘how many’ and learn social skills
  • Play with measuring spoons, jugs, containers, timers, rulers, different lengths of sticks
  • To be able to do the activity below, a child would need to understand ‘same’ and ‘different’. Play these activities in a variety of ways, continuing the pattern forwards and backwards, up and down.

We compare different sizes of objects, lengths of lines, Cuisenaire rods and Numicon shapes.

Give your child experiences of matching things that are the same; match the sameness, sort out to group objects with similarities. Sock sorting is fun! Putting dishes away after they have been washed, setting the table is teaching patterns and logic.

Enjoy counting songs and books to show groups of objects. We name those groups by using words such as ‘one, two, three’. Counting is actually very complex. It’s a compilation of many thinking and memory processes.

We know that for many children with Down syndrome, they have their own version of dyscalculia which is a difficulty with maths. One characteristic is not all the numbers we know exist for them. ‘Four’ and ‘seven’ are the most common that children struggle to learn and include with the other numbers. If your teacher is insisting that your child must count accurately before they can move them on, she is unwittingly providing a block in the road for learning.

My daughter really only learned to count reliably at secondary school. There’s a lot more to maths than counting which is a life skill, not the foundation.

Teach your child these skills too:

  • Recognising a problem
  • How to solve it
  • When and how to ask for help
  • Predicting outcomes
  • Checking
  • Working step by step in a pattern

Numicon has shown to be effective for all learners. It was written when teachers discovered their bright children failing the same time the Numeracy Project was introduced in their school in the south of England. They, along with a maths expert wrote 12 weeks of activities that became Firm Foundations. In that school was a student with Down syndrome. Her maths understanding and achievement really took off. Her enthusiastic mother began the trend that is now worldwide- of taking Numicon and its success to other families.

I was sceptical at first but saw first-hand with both of my girls how wonderful this programme is. Firm Foundations along with three following books has been rewritten to support children with special and high learning needs as Breaking Barriers. It’s highly successful with research and huge evidence behind it.

Schools using Numicon in New Zealand as their mainstream maths programme are reporting a substantial increase in success across all their year levels 1 – 8 when they introduce it.

I’m particularly thrilled about this. New Zealand used to be in the top four countries of the world when I began teaching in the 1970s. Now we are at 21 and slipping. The impact on our country is already being felt in trade, industry, further education.

Here’s the sequence for beginning maths with Numicon:

  1. Making sequences of patterns.
  2. Matching Numicon shapes and pictures of Numicon. Learning the colour names.
  3. Learning about ‘bigger’, ‘smaller’ and ‘biggest’ and ‘smallest’.
  4. Putting the shapes in order.
  5. Naming the shapes by number.
  6. Making the Numicon patterns with counters and objects.
  7. Matching the patterns to the shapes and numerals
  8. Joining and separating the patterns to learn addition and subtraction
  9. Balanced to show ‘equals’
  10. Repeated addition and subtraction leading to multiplication and division.
  11. Fractions.

Numicon sets can be borrowed from Linda de Kaat at NZDSA as well as other DSA’s. You can purchase in New Zealand from Edushop and use the PARENT code to receive a discount.

The online instant HTML editor tools make a great resource that will help you a lot in your work.

There are other resources that work well for children too such as Cuisenaire rods and Stern blocks.

Reading and Writing

People with Down Syndrome are often good readers, but do not always understand what they are reading.

Research shows us that it’s best to learn the ‘picture’ of the word and at the same time learning the sounds of letters that make words. These are the ‘whole word approach’ and ‘phonics approach’.

The first step is being aware of the sound and how it’s made then linking it to a letter.

If you are working with a speech language therapist, she will take you on the journey of learning the sounds and letters in a sequence. If you don’t have a speech language therapist buy a programme such as Reading Eggs, Jolly Phonics, Fitzroy Readers, Reading A-Z Decodable Readers and Handwriting Without Tears.

These resources are multisensory and lots of fun. You will be introduced to handwriting, spelling and the enjoyment of reading as well.

There are free resources you can download as well – Letters and Sounds, Fun Phonics, Oxford Owl for Home UK, Freereading.net, Speld SA Phonic Books with excellent videos.

To bring enjoyment to reading, the whole language approach is very effective. There are many choices in New Zealand – the PM readers, Ready to Read, School Journals, Sunshine books, Oxford Owl (online) which begin with books with no words, just pictures to talk about.

The New Zealand Government has produced two series – Sound Sense and Sounds and Words. You download a booklet about the approach at www.literacyonline.tki.org.nz

Enjoy these early years at school and expect to see great progress in the first year with explicit teaching that will continue through all their years.

The online instant HTML editor tools make a great resource that will help you a lot in your work.

In her second article on education, Margi Leech focuses on taking tiny steps in the earliest stages of teaching your child.

Most parents and teachers have discovered that what they do for children with learning difficulties works for all children.

This article does not intend to be the final note on learning, or your child, but rather an introduction to approaches and strategies that have had success internationally.

Keep in mind that not all children learn the same way. You may need to try different approaches.

What does work, is taking tiny steps.

How do you eat a chocolate cake? The whole lot at once? No, piece by piece. Children with Down syndrome learn ‘crumb by crumb’.

What is learning? There are many theorists who have written about this over the years, but simply put:

A memory journey of putting together ideas and making connections between them to solve problems.

When does learning begin? Before we are born. We can hear, feel, be aware of emotions and see light. We arrive knowing about communication.

What about ‘learning’?

“All children can flourish and enjoy learning when the environment is safe with the right supports and framework or pathway to structure and organize their thinking,” says Neil MacKay in Total Teaching (SEN Books).

Our children are NOT learning disabled. They are not an educational disaster. Expect that your child will learn.

Our children are not sentenced to a life of being ‘taken care of’, being excluded and not making a contribution to our community.

Be careful, because their education will reflect whatever values you hold. You will have to sort these out before you enter the child care, early childhood centre, and school settings.

And, you will have to educate/remind all those who you meet to uphold your values if they don’t already have them. Be strong!

We know that there is a huge range of abilities of the entire population, same too with the Down syndrome population. The impact of other challenges should not be overlooked.

Some of our children will have aspects of Autism, dyslexia, dyspraxia, ADHD, OCD, memory and organisational difficulties. Explore these differences so that you are aware of them and can support your child. A great book to help you is: The Parent’s Guide to Specific Learning Difficulties by Veronica Bidwell. There are copies to borrow in the IHC library.

The best thing you can do for all your children of all ages is to build up their ‘working memory’.

Working memory is necessary for all learning. It is the memory that is seen when your mum is trying to call your name but calls everyone else’s first! This is now being researched and found to be very significant. The challenges to using our working memory are:

  • Distractions and noise
  • Too many requirements
  • Having to think about the activity AND concentrate on instructions
  • Instructions in sequence
  • Too many words to listen to
  • Too much to look at

Best tips: Listen, look, do, know! Touch it, see it, hear it, got it!

  • Write down your instructions on a sticky note and point to them while explaining what to do.
  • Give them something to DO. We learn best by doing. It’s known as kinaesthetic learning.
  • Give time to think
  • Repeat it exactly, immediately and later until confident. (Emily took 3 weeks to learn somethings.)
  • Whakarongo, Titiro! Mahia kia mau!

Approaches

  • Education is all about relationships.
  • Build a positive learning journey and fun times together.
  • Use multi-sensory activities to strengthen memory – seeing, doing, touching…
  • Use art, music, drama, play, games, movement
  • Be creative and adventurous
  • Keep it short – 1 minute or even less to start with
  • If you find the task too difficult, think about the little steps that together complete the task. Remember how you learned to drive a car. You probably didn’t drive down the motorway on the first day!
  • Finish with success always! You will both want to do it again later. I found the best time was as Emily was finishing her breakfast. I brought to the table what she was going to do on a tray already set up the night before.)

Strategies

  • Copying
  • Matching
  • Sorting
  • Exploring relationships (bigger, smaller…) and positions (behind, inside…)
  • Social stories

Start when your child is 18 months. The UK early intervention team starts working with children at 18 months. The activities they do are around speech and language, reasoning, problem-solving to find, fix, match, sequence and sort. Look at the great supports on: https://www.portage.org.uk/support/resources/parent-list/317

  • Reading books together
  • Talking about pictures in books, newspapers, magazines, social media
  • Singing rhymes and songs
  • Cultural music activities (poi, haka, hula…)

Begin the activities below from 3 or 4 years of age.

Here are websites to explore with lots of fun activities.

Little Bins for Little Hands
Fun Learning For Kids
Oxford Owl

Reading, spelling and writing

Many people have studied how our children learn and there are some great programmes available.

Teach letter sounds and names, writing his/her name with slim chalk, then pencil. Explore these programmes:

Handwriting Without Tears – preschool and school – book and app activities.

See and Learn and all the apps and programmes from Down Syndrome Educational

Letters and Sounds – children learn to read and spell at the same time. Mona McNee has a son with Down syndrome. She taught him using phonics. Her programme is now used throughout the UK with support from the government (http://www.letters-and-sounds.com/) and is available for free from her website: http://www.phonics4free.org/home

ADSA also has some of the resources in the library and are available through me. [email protected]

Use readers that have been written to help children learn to read. These are decodable readers. You can download these from Reading A-Z. There are also Fitzroy Readers.

Also choose readers that help children enjoy the language of reading. These readers are:

PM Readers available from: Cengage. Begin at the Magenta level.

Ready to Read from schools (Jodi Wickstead, one of our mums is the graphic designer!)

Joy Allcock resources

Jolly Phonics

The Learning Staircase

Maths

This is more difficult for children with Down Syndrome because so much is abstract and has special language. Remember that Maths is all about patterns and relationships which our children are good at.

Rhonda Faragher’s research on people with Down syndrome and their mathematical thinking showed that a majority have dyscalculia (the maths version of dyslexia) – their own version.

Create patterns with objects you find on the beach, in the park, in the kitchen, with food on your plate!

You can download great beginning activities from www.numicon.co.nz – Resources and Free Downloads for patterning, sequencing and counting.

Counting – is really hard. There are five thinking processes to remember and coordinate when counting. Some children may not learn for years or never count, but they can still learn maths which is more than counting. Follow these steps to begin with:

  1. Hold a small block or object in one hand and another in the other hand at the same time.
  2. Place one small block or object beside the other.
  3. Pair an object with another the same. Eg., shoe and shoe, spoon and spoon.
  4. Roll forwards and backwards under the hand a small cylinder – a pill container or cotton reel
  5. Pile then a tower of blocks or stack of plates or cups. Duplo is good for this.
  6. Match another – find the same.
  7. Join two, then three blocks together. Lego or Snap Cubes work well.
  8. Draw over a thick straight line with a finger, from left to write.
  9. Draw over a thick straight line with a finger, from top to bottom.
  10. Place a block on an outline of a block, a cylinder on a circle, an object on a circle.
  11. Place blocks or objects into a pattern line; first horizontal, then vertical, and then diagonal.
  12. Place blocks or objects into a pattern – Numicon patterns are so good for this because then the children learn what a group is and that a group has a name. Then sequence the patterns.
  13. Recite and count objects into egg cartons, along a line, into a drawer, onto the table, out of the bath…
  14. Programme a small toy or robot to move forwards and backwards. A Chess board works well to guide this.

You can find products at Switch Learning, Sensory Corner and Edushop.

Enjoy this precious time together!

Next time you can read about activities and learning in the primary school years.

 

UNDER ATTACK

Is the Down syndrome community under threat?

New Zealand is on the cusp of introducing more advanced antenatal testing for Down syndrome. COEN LAMMERS investigates if the Down syndrome community should feel under attack and looks at the ethical, medical and social issues at the heart of this debate.

Pre-natal screening for Down syndrome and other genetic disorders has long been a contentious issue in New Zealand and abroad.

The introduction of more sophisticated and conclusive testing methods has increased termination rates and triggered a global debate around screening ethics, the value of a life with a disability and state-sponsored elimination of Down syndrome.

In some European countries, babies with Down syndrome have become a rarity.

Iceland has reportedly reached a 100% termination rate, closely followed by Denmark where in 2017 only four new babies were born with Down syndrome.
Whether you agree with the abortion policies in those countries or not, the undeniable fact is that in many countries young people with Down syndrome will soon become an uncommon sight, or worse, an unwanted anomaly.

A striking example of the growing sentiment that Down syndrome is a burden that some societies can do without, was highlighted last year in the Netherlands where some media commentators debated whether Dutch women had a moral duty to abort their babies with Down syndrome.

Their comments were based on a list published by the Dutch Ministry of Health of the most expensive diseases and conditions which rated Down syndrome as the most expensive condition to the tax payer.

This list and the articles were widely discredited, challenged and condemned as biased because it conveniently ignored major health areas like cancer.
This discussion triggered one Dutch physician to tweet that “We haven’t come this close to Nazi before,” referring to the systematic extermination of disabled people in Nazi Germany.

This quote may sound dramatic, but the overseas trends and policies in some of these so-called enlightened and modern societies have caused strong concerns in the global Down syndrome community about the value their own society puts on a life with Down syndrome.

Unfortunately, as they are introducing more effective screening programmes, most countries have not had a wide public discussion around this sensitive issue.
Statistics from the United Kingdom show that the termination rate of women who have had a positive screening test, has not changed over the past few decades and remains around a staggering 90%.

What has changed with the introduction of more sophisticated tests, is the actual number of positive tests and subsequent abortions in the UK, increasing from 482 in 2010 to 706 in 2016.

This year the National Health Service in the UK is rolling out the Non-Invasive Prenatal Testing (NIPT) which gives women a near conclusive result on whether their baby will have Down syndrome.

Some critics in the UK have argued against the introduction of the test, fearing Icelandic statistics.

The NIPT test is not yet widely available in New Zealand and Dr Jane O’Hallahan, Clinical Director of the National Screening Unit, says that a slower uptake can in this instance give New Zealand an advantage and the opportunity to have a debate on how to introduce the test in a responsible manner.

“We need to tread very carefully around the ethics and the management of introducing this test in New Zealand,” says Dr O’Hallahan.

The NIPT is already privately available in New Zealand but Dr O’Hallahan says that the Ministry of Health is likely to make the test available, initially for women with a higher chance of having a baby with Down syndrome or other genetic disorders.

Dr O’Hallahan understands why the overseas statistics cause concern in the New Zealand Down syndrome community and is adamant that the Ministry of Health does not share the views of their European counterparts.

“There is no agenda to terminate lives with Down syndrome.”

Unfortunately, the Ministry of Health does not keep any records on positive tests for Down syndrome and terminations.

Dr O’Hallahan says that roughly the same number of children with Down syndrome have been born in New Zealand in recent years and from that she concludes that improved testing has not triggered a rise in terminations.

The National Screening Unit has created a working group of stakeholders to look at ways of improving informed choice for all ethnicities. This working group includes New Zealand Down Syndrome Association National Executive Zandra Vaccarino and board member Kim Porthouse.

Dr O’Hallahan says these stakeholders are providing valuable insights, beyond the medical discussions.

Mrs Porthouse says that the NZDSA wants the medical sector to understand that the screening debate is a social issue, not just a medical issue. “And the social implications need to be part of these discussions.”

She has an interesting perspective as a midwife and a mother of a son with Down syndrome and feels that there are two specific issues at stake in the screening discussions.
In her view, the pregnant women firstly need to be better informed before they decide to have any tests at all, and if they receive a positive test, the women need to get more balanced information about Down syndrome.

Mrs Porthouse says that most women think the tests are standard and don’t really consider the impact the results can have and the sudden life-changing decisions they may be facing.

“People think they are just going to take a picture when they get their first scan,” says Mrs Porthouse who feels that pregnant women should be better informed that the reason for the 12-week scan is for an NT (Nuchal Translucency) scan as part of the MSS1 (Maternal Serum Screening) screen.

The Ministry of Health has produced a brochure on Screening for Down syndrome, which clearly spells out the options and the choices women have, but Mrs Porthouse doubts if the brochure is used widely at present.

“Women should be offered the option to take this away to read through before deciding to screen, but often due to timing, most decide at the initial booking appointment.”
If they undertake the screening and it detects a higher risk or chance of Down syndrome, the families are forced to make quick, big decisions.

They need to make a call on having an amniocentesis, which carries a small risk of losing the baby, or in some centres they may be offered the NIPT test, which is expensive. They also need to consider what impact a baby with Down syndrome may have on their lives.

If the additional more-conclusive testing indicates the baby has Down syndrome, the medical provider will explain what Down syndrome is, but in most cases this talk will merely feature a long list of medical conditions the child may or may not develop during their lives.

“The doctors will cover themselves for everything, even if there is just a minimal chance the child will ever have those issues,” says Mrs Porthouse. Mrs Porthouse says the women are not being counselled on the wider social issue and positive impact a child with Down syndrome could have on their lives and community. “These families need to get the chance to talk to parents who are living with Down syndrome or other people who have faced the same decision.”

Instead, she is aware of anecdotal evidence that women often feel pressured to terminate their pregnancy. “It is a very emotional time for the families and it is hard to think clearly, so if you are only presented with a long list of all the things that can go wrong with your child, it is not hard to see that people opt for termination. “In many cases, it can be a decision they regret,” says Mrs Porthouse who personally knows of parents who after termination have struggled with their decision. “In some cases, the people get to know more about Down syndrome or get to know someone and they find out it was not at all what the doctors had made them believe. For some it has been devastating.”

Dr Jane O’Hallahan is aware of the cases in which women feel pressured to terminate their pregnancy. “But we don’t know how widespread this, but there should be no pressure.”
The Clinical Director of the National Screening Unit says that the Ministry of Health is aware of the issues and is continuously improving information going to women. “However the introduction of NIPT in the future will require an overhaul of the informed choice process to enable women to make the right decision for them and their families,” says Dr O’Hallahan, who admits that her colleagues often portray a future with Down syndrome in a negative light.

Dr O’Hallahan says that the information provided is “over-medicalised” and is not a social discussion. “It does not consider the value of people with Down syndrome or the fact that these people add value to so many lives of others.”

As an example, the Director mentions her own daughter who had the privilege of following a family with a newborn with Down Syndrome during her medical studies – a lovely experience that would benefit all medical students.

Dr O’Hallahan says that the feedback from the NZDSA and other stakeholders on the working group had been valuable to show the social side of Down syndrome and that the National Screening Unit is more focused on counselling and providing better education for medical professionals and medical students about Down syndrome. “We are currently putting a lot of effort into giving more holistic information to give a real picture of what life with Down Syndrome is like. We are investing to give women the right information, so they can make the right decision for them and their family.”

 

ANTENATAL SCREENING

What are all the tests and what do they mean.

NT scan: Nuchal Translucency ultrasound scan performed around 12 weeks (range 11 weeks to 13 weeks, 6 days). It measures the fluid in the nuchal space at the back of the foetal neck. The old test used to combine just the scan with maternal age to give a risk of Down syndrome. Risk results are no longer provided on NT scan alone as they are less accurate compared to MSS1 or MSS2 screens. The NT scan is now only used in conjunction with the MSS1 calculation.

MSS1 screen: Maternal Serum Screening (combined blood test – 2 markers – and NT scan) performed in the first trimester of pregnancy until 13 weeks 6 days gestation. Current government funded screen, offered to all women who engage with antenatal care in the first trimester.

MSS2 screen: Maternal Serum Screening (4 marker blood test, no scan) performed between 14 weeks to 20 weeks gestation. Accuracy levels are said to be about the same as MSS1 screen, offered to all women who engaged with services too late for MSS1 screening or those who prefer not to have ultrasound scans of their pregnancy. Government funded.

NIPT (or NIPS) test: Non-Invasive Prenatal Screening. Blood test only (new blood test which is different to MSS1), is said to be 99+% accuracy. Currently not government funded in New Zealand and expensive.

Amniocentesis: diagnostic test in which a needle under ultrasound guidance is used to draw fluid from around the foetus. This fluid contains foetal cells which are used to look at chromosomes to see if Trisomy 21 (Down Syndrome) exists. Carries a risk of miscarriage of 0.5 to 1.0% (1:100 – 1:200).

Transition into the workplace and holding down long-term employment remains a challenge for many adults with Down Syndrome. COEN LAMMERS examines the employment sector, the access for people with learning disabilities and the success stories that might inspire others in the community.

New Zealand has a long and proud history of mainstreaming students with disabilities, but many families feel they are dropping off a massive cliff at the end of high school. The pathway between pre-school, primary school and secondary school is clearly sign-posted and well-supported, but where to from there? Finding your own place in the world is an intimidating challenge for every young adult, but for people with Down syndrome and their families, it often feels like the big unknown. Securing employment is a key element for a rewarding life and gives every person a source of pride and independence, but for many people with learning disabilities full-time, long-term employment appears to be a pipe dream.

“New Zealand is doing as well as any other country getting people with disabilities into employment, but we still have a long way to go as far as creating better pathways for younger people,” says Grant Cleland chief executive officer of Workbridge New Zealand. Workbridge is the country’s largest “pan-disability” employment service provider and assists around 3000 people with disabilities to secure employment each year. Over the past decade, Workbridge has linked 36,800 New Zealanders with learning difficulties, mental health issues, sensory, physical and other disabilities or health conditions with a suitable job and supports them to be successful in the workplace. Cleland says that his organisation in 2017-18 had 1,664 employers who listed 4,061 vacancies with us, of which in 1,332 provided a job for our jobseekers and 55% hired more than one person with a disability. The list includes several strong national partnerships like, Accor Hotels, ACC, IRD, Victoria University, Westpac and of course Z-Energy who in recent years alone have employed over 300 people with disabilities. “Those companies are leading way, but the list is growing each week.” He says that the attitudes around employing people with disabilities is changing rapidly and is no longer seen as charity or a community service. “Employers are more willing to try new things, are getting more disability-confident and the conversation around disabilities has become much more genuine,” says Clelland. He says that the staff shortage for many companies has opened their eyes to a new talent pool that they had not considered. “There are a lot of myths around people with disabilities, but the research clearly shows that they are just as productive as any other employee.”

Grant Clelland

Grant Clelland

Cleland says that some employers are wary of looking at this group because they fear that a worker with a disability may require significant support and resourcing, but research shows that less than 10% of disabled jobseekers need some additional support or alteration to their work station. “Research shows that hiring a person with disability has a wonderful impact on the workplace and is also a good reflection of our community as 24% of New Zealanders have some kind of disability, illness or long-term injury.”

Employment is one pathway for people with disabilities, but many families in the Down syndrome community have decided to take control of the situation by creating their own micro-businesses. “Ten years ago, there were maybe five micro businesses around New Zealand, but now there are hundreds,” says Lawrence Chok who has been driving force behind many of those micro-businesses. With a background in the corporate work, Chok decided 11 years ago that he wanted to create a micro-business for his son Robin, who has Down syndrome, but realised he could not do this alone. “Many microbusinesses fall over after 5-10 years when the families simply run out of puff,” says Chok, who formed Family Action Support Team (FAST) with three other families in the Palmerston North area, with a variety of disabilities. Chok visited Canning in Canada to research a successful CAPRE (Community Association of People for Real Enterprise) model and the group started four micro-businesses that tapped into the passions and the skills of their children. He says the past 11 years have been an amazing journey for all four children and even though not all businesses are still going, the work has morphed into new opportunities. One of them still runs a business, while one of the other participants has worked his way through script writing courses and hopes to get employed with Peter Jackson. “And they are all living independently.”

Chok now runs two-day workshops across the country to help families get started and travels around the world to find new innovations to help people with disabilities. Coming from the corporate world, Chok says he was mainly focused on the businesses making a profit and being viable in the traditional sense, but soon discovered that the micro-business model had very different goals and success milestones.“I was looking at it completely the wrong way and the lot of families do, until I realised that this micro-business model needs to be about the total well-being of the individual,” says Chok. “Why do most of us do the job that we do? Because we follow our passion. So why don’t we let our children follow their passion?” He says that many families trying to get and keep their child into employment are struggling and are stressed and that some employers also find it challenging.

“For many it feels like they are banging their heads against the wall,” says Chok who is clearly frustrated that the Government spends millions on securing supported employment but does not encourages micro-businesses, for example by raising the amount a person with a disability can earn before they lose their allowances. Canadians are ahead of Aotearoa as the individual’s microbusiness can earn as much as $9,000 per annum before it affects the individual’s supported living allowance. In the model that Chok shares with families he advocates for working smarter, not harder. “Families need to learn to use the three Os: Other People’s Time, Other People’s Money and Other People’s Services.” He says there are plenty of people in the community who want to support these kind of micro-businesses, and sufficient financial support available among different agencies, once you know how to use the system and access the funding.

Lawrence Chok

Lawrence Chok

Chok says that the positive changes he has seen in the young people he has worked with have been phenomenal. “Once you get total engagement of the individual, they grow in confidence, learn new skills and they walk differently and talk differently.” Chok is the first to admit that a micro-business is not the only pathway for people with disabilities to lead a full life, and says it may not suit every family.

The Te Mahi Trust is one example of families getting together to create a micro-business when Rachel Hill and Alison Faithful in Northland were grappling with their children leaving school. The Trust has a vision to run a catering business or café for young adults with a disability, and have started by purchasing a coffee cart, in which two young adults sell coffees, cold drinks and food, supported by one carer, at community events and at a road side fatigue shop.“ We are hoping the people of Whangarei are ready for it,” says Alison Faithful, who hopes the cart will secure a permanent spot in town soon.

Lawrence Chok and Workbridge’s Grant Clelland are both encouraged by the growing number of success stories in the disability sector, but the latter says the education system needs to do better to prepare people with disabilities for a working life. “Schools do a lot of planning for transition out of school, but it does not often lead to employment. Instead the school transition often leads to a day service option, because their biggest block is access to employers.”

To show schools what is possible, Workbridge last year piloted, Z in schools, where students in Special Units from Papanui and Riccarton High Schools in Christchurch could apply for four internships with Z Energy. This included students with learning disability. The students who might normally have struggled to find employment completed a 12-week internship which led to a Service IQ Level 2 Retail Certificate and for one of the student resulted in a full-time job. The trial has been so successful that it is now extended to Auckland and Dunedin.

Cleland says that some schools are better than others in preparing their students for the workplace. The aim of our work in schools is to create a pathway into employment for disabled school students, with employers who are already employing the jobseekers Workbridge work with. “We think more students need to get the right learning support to prepare them for employment. With Z in School the schools were able to able to teach the Service IQ Level 2 Unit Standards to reinforce the learning in the workplace,” says Cleland who himself grew up with a disability but had parents with high expectations and willing to challenge the status quo.

One company that is proactively trying to fill that gap is Kilmarnock Enterprises, a Christchurch business that employs differently abled people and aims to change attitudes around people with disabilities. The company was founded 60 years ago as a protected workshop but has evolved into a complex, thriving business that focuses on enhancing the skills of their workforce. As a registered charity, all profits are pumped back into Kilmarnock Basecamp, where the company provides education, health, and skills training for its employees. “Our staff learn more skills, which means we get more adept staff who enable us to be more successful. It’s a win-win situation,” says Tim Jones, General Manager Growing Good at Kilmarnock. “We don’t look at the things they can’t do, but find what they are good at, what work they enjoy and then try to build on those personal skills,” says Jones.

Last year, the Kilmarnock Academy was established to help graduates find meaningful, sustainable open employment outside of Kilmarnock. “Previously, our employees came to us, and more often than not, stayed in our employment till retirement,” says Jones. “But we now wish to only be part of their journey, and not the destination. With the right training, support, and encouragement, we can all achieve incredible things.”

Kilmarnock used to compete for work because their workforce was paid below the minimum wage, but Jones explains that companies are now using their services simply because his team can do certain jobs better than anyone else.“Some of our staff still earn below the minimum wage, which is often at their request so they don’t lose their allowances, but our company is committed to have everyone on the minimum wage in the very near future,” says Jones. Workbridge boss Grant Clelland says that his organisation does not want to use subsidised wages as an incentive to secure a position, but strives to have all their clients in “open employment” which means the same conditions, responsibilities and pay as their colleagues. “Probably less than one per cent of our clients have some sort of subsidy for their wages to entice their employer to take them, but all the others are employed simply because the employer wants them for their skills.”

The chief executive says New Zealand still has a long way to go and lacks an employment-focused national strategy like Australia and other countries have adopted. “We still have a welfare strategy where people think about losing benefits instead of thinking about the skills and strengths people with disabilitiescan offer the work force,” says Clelland. “Until we change that policy and mindset, with families and at Government level, we will continue to create a lifelong dependency.”

By Glen Jelley 

 

Jessica was our first child of 3 and we knew at the 19 week scan that she was going to have down syndrome so had a bit of time to prepare and research. 

She came into the world screaming her lungs out like any other child with people rushing around testing this and that. It was a good 15 mins before i was able to hold my beautiful baby girl. The next few days consisted of xrays, heart scans and blood tests. The results were encouraging with a small hole in the heart that they were confident would close over itself. 

We were able to take her home at around 6 days old. We were home 3 days when we received a phone call from a parent of a child with down syndrome that i used to babysit when i was in my teens. They started of with congratulations then proceeded to tell me about everything Jessica would never do, one of which was ride a 2 wheel bike. Not sure why that stuck in my head but it did. 

We were very lucky with the support services we had and got a lot of great advice. Not all of it was relevant but our thoughts were ‘listen to everything, take what works for you at the time and put the rest in the memory banks for later.’

We had her in a walker and jolly jumper from the time she could hold her head up herself. Once she could sit up by herself (around 12 months) we put her on one of those wee 3 wheel plastic doon buggy bikes in the house. Once she got the hang of not running over her feet, she was off. We also took her on lots of bike rides behind our bikes on a half wheeler I adapted to hold a car seat. I believe this helped with her balance. She loved it but would often go to sleep. 

Bike modifications

From there at around 2 and a half (she was just starting to walk) we went to a balance bike. She kept going back to the doon buggy as it was easier so big mean dad put it away in the garage. With a bit of work from Mum and Dad on the front lawn she soon mastered the balance bike and got up way too much speed for my liking as they don’t have brakes lol. 

She stayed on the balance bike till she was about 4.  We then stepped up to a 12 inch 2 wheeler pedal bike with training wheels. Looking back I think this is where we made our biggest mistake. We should have persevered and gone straight to the pedal bike with no training wheels, but as we were both working full time time was limited and this was the easy way to get her on the pedal bike. She stayed with the training wheels for about 2 years. We did lift them up and tried briefly a couple of times to take them off without success. 

Family bike ride

When she was around 6 or 7 we were at Miller’s flat camping at Christmas time for two weeks so we decided to make a concentrated effort to get those training wheels off. I took the training wheels off and we went over to the local school rugby field. Now I’m not going to say it all went smoothly and she was off and riding in a day, far from it. There were crashes, tantrums and plain old sitting on the ground and refusing to get on it. But with a bit of good old bribery and determination on her part we got her riding by the end of the holidays. Just by running along behind her holding her then the good old ‘yes Jessica i’m holding you’ (but not really) until she was off on her own. 

Jessica riding the trails

Now at the age of 10 we are all out riding the trails. She is now on a 18 inch bike with gears. We ride around 8 to 10 km’s at a time. That is more limited by her younger brother. Our big aim this year is to bike 13km’s from the camping ground to pinders pond, spend the day swimming and ride back home again. 

This year she is doing the bike section of the quadrathon at her school. Last year she did the 2km road run with her TA. 

What we have learnt and the moral of the story is given the same opportunities and a little extra pushing/encouragement (with some thinking outside the box) as a typical child they might just surprise you by what they can achieve (subject to what the doctors may have told you).