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

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.

 

Down Right  

Roseanne develops own photography business 

By Dave Nicholl 

 

An Invercargill woman  has turned her passion for photography into a business. 

Roseanne  Zyskowski, who has Down syndrome,  has put 101 photos of her  favourite  places throughout  Invercargill  into a calendar. 

Zyskowski, who has been a photographer for a year now,  has taken pictures of  the Reading Cinemas, Queens Park, Thompsons bush  as well as her own backyard. 

The most difficult part of the project was  getting  motivated on some days but with the help of family,  friends  and support  workers  she got it finished,  Zyskowski said. 

Her mother Clare  developed the idea after  attending  a  social enterprise  workshop held in  Invercargill  in November. 

The initiative was  run by the  Ākina  Foundation with the support of  the Community Trust of Southland, Venture Southland  and the  Southland Regional Development  Strategy group. 

The idea was to give Roseanne a way in which she could use her passion for photography to support herself. 

“When people hear the  word  ’syndrome’ the  story  they have in their head might be quite different to the way a lot of young people with Down syndrome are growing up and developing.” 

The vision  she developed at the workshop was to change the story around people  living  with down  syndrome and  give  them the  opportunity to stand on their own feet. 

Included on the back of the calendar was a quote “No disability, only people,” that was designed to encourage others that those living with disabilities  are just  normal people in the community. 

The hope was that by showing Roseanne how she could develop her passion for photography, she could turn it  in to  a microbusiness. 

“She can actually take her  photography and do something with it.” 

If the business did not succeed it would still be a valuable learning opportunity for  Roseanne, Clare said. 

Each  photo had a story or a person behind it,  Roseanne said. 

She is selling the calendars for $22 

 

Rosanne Zyskowski with her calendar

Kavinda Herath/Stuff 

Copyright: Southland Times 

Interview with Peter Rees for Down Write Brilliant

Chat 21’s roving reporter Andrew Oswin interviewed Peter Rees, a young man with Down syndrome from Christchurch, about his job.

 

What is it you like doing at your job at Pomeroy’s?

Serving out the food and the drinks to the customers.

 

When did you start working at Pomeroy’s?

Ever since before the earthquakes.

 

Where is Pomeroy’s?

Pomeroy’s is located on the corner of Kilmore Street and Fitzgerald Avenue.

 

Why is it important for people with Down syndrome to get paid work?

It is very important because it is a major part of someone’s life.

How did you get the job at Pomeroy’s?

Well it’s a very funny story, actually. One day, Dad and I went to the pub and had a few drinks. But the beer that I had was very strong. It was called Epic Armageddon, and I got a bit drunk, and I walked up to the owner of the pub and I asked for a job and I got the job.

Peter Rees at Pomeroys

I love working at my pre-school

by Hannah Proctor

Footsteps

About three years ago, when I was still at school, I was given an opportunity to try work experience in a pre-school, Footsteps Christan Pre-School, in Christchurch.

My teacher aide came with me to help me twice a week until I was good enough to do my jobs on my own. Then I was able to leave school and go to work there by myself.

I have a uniform and a special name badge.

I drive with my Mum to her work, and then I walk the rest of the way by myself to get to the pre-school.

My jobs are getting the morning tea plates and drinks ready for the children and doing the dishes afterwards. I also get things ready for the children for lunch time as well.

I enjoy playing with the children too, and I love working with the teachers.

Last year they asked me to work another day, so now I work three mornings a week.

They pay me now too. I feel happy to have a paid job. I like spending my money.

The teachers say they love having me working there.

They’re very kind and they give me lots of hugs.

I love my job.

Hannah arriving at work

 

 

By Rebecca Moore/STUFF

 

Flynn Laker is  putting his business hat on, or socks more like it.

At 14-years-old Flynn is learning what it takes to run his own business as well as giving back to causes close to his heart. He has Down  syndrome but is not letting it hold him back from fulfilling his dream of being the boss of a business.

Flynn Laker, 14, sells socks at his popup store at Shelley E Coutts Dance Academy on Tuesday.

With his cousins Nick and Georgia Popham, and his sister Meg Laker, 16, they set up the business Flynn’s Sox.

As well as learning the skills of what it takes to be a businessman, $1 from every sale will go to the Southland Down Syndrome Support Group in Southland.

The launch was aligned with  World Down Syndrome Day on Wednesday, which was why he chose the group as his first charity.

In the future he will donate the money to other charities who have helped him, including Riding for the Disabled and Conductive Education.

When asked about the importance of the business, the first thing Flynn mentioned was supporting charity.

“It’s really positive … the reason we got it is because we need the money for [people with Down syndrome],” he said.

Money will initially go towards helping support people in the region with the condition, then other charities.

On the opening day on Monday more than 200 pairs of socks were sold.

Flynn’s favourite socks were the yellow ones with squiggles – which he called scrambled eggs – and the hot air balloon ones.

However, he picked out all of the many styles of  socks and comes up with quotes to put on tags for each online sale.

Some slogans read “you are the bees knees” and “man you’re going to look cool in my socks”.

Flynn’s mum Tracey Laker said the business was not a lifelong income for him, but starting business was for him to learn the skills of the business and working hard.
“Nothing ever  happens if you don’t put the work in,” she said.

“It’s great to actually help him fulfil  his dream and understand business. It’s wonderful. He’s so lucky that his cousins have been through university and see that he has potential.”

From the moment he was born the family decided he would not be held back by the condition.

“Ever since Flynn was born our philosophy was to support him to be the best he can be and be independent in the future. Children and adults with Down  syndrome have no limit on what they can do. They can be as successful as anyone else.”

The socks were in funky patterns to celebrate difference, she said. “People just love supporting the concept of helping out Flynn in business.”

- Stuff

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).