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CHAT 21

Issue 79, Spring 2019

CO M M U NICAT IO N | HOL ISTIC | ADVOCAC Y | TAONGA

Journal About & For The New Zealand Down Syndrome Community ISSN 11776323

Our people

Aria Morgan learning the violin

Ezekiel Ward on his cousin's farm

Oscar Smyth, 3, off to kindy

Hamish Gilber, 17, at Kapa Haka Regionals

Contents Models with Down syndrome light up NZ Fashion Week Ageing Down syndrome population raises dementia issue Dementia in people with Down syndrome: What does the research tell us? Special Olympics celebrates inclusion NEO Notes Aucklandâ€™s Tim Fairhall changes Kiwisaver rules Down Write Brilliant Helping children with Down syndrome reach their full potential in early childhood centres and primary school HEALTH: Keratoconus research looking for 100 more participants Great idea to get my eyes tested President's pen Genuine inclusion key to successful primary school education Heidi comes third Sanctuary movie potential game changer in IHC library NZDSA notices Contact directory Me and my pet Our people

From the Editor 4 6 8 13 14 16 17

25 28 29 30 32 35 36 37 38 39 40

It is my pleasure to present to you the spring edition of CHAT 21. For the second time this year, we had to expand the size of the journal to a record 40 pages to accommodate all the wonderful stories, and my apologies for not being able to run every photo or story you have been sharing with me. As I mentioned before, this journal can only be as successful as the support it receives from the Down syndrome community, so many thanks to everyone who has responded to our request for story ideas or has provided content and photos. In this edition, we celebrate people with Down syndrome experience success in all facets of life, on the fashion catwalk, in their jobs, on the rugby field, in the judo dojo, in the Beehive, and in the ballroom. In our main feature, we focus on the increasing health issue of dementia facing our ageing Down syndrome population, investigating the state of play in New Zealand, as well as research from around the world. The journal also looks back at the anniversary of the Special Olympics with a high-profile at the hallowed turf of Hagley Oval, as well as the annual Unforgetaball. I hope our members with younger children will find our regular education contribution by Margi Leech and the early intervention story from the Champion Centre useful. And of course, I hope you enjoy the many, many fantastic photos we have from around the country. Please keep emailing me your ideas, stories and photos, so we can share your stories with the rest of our community. Coen Lammers editor@nzdsa.org.nz

This issue of CHAT 21 was made possible with donations from Southern Stars.

Disclaimer Through the quarterly Journal, the New Zealand Down Syndrome Association will attempt to report items of interest relating to Down syndrome. The NZDSA does not promote or recommend any therapy, treatment, agency, product, political position, religion or advice. The opinions expressed in CHAT 21 are not necessarily those of the NZDSA. The editor reserves the right to make corrections to materials submitted for publication. All photos sent in to the journal become the property of the NZDSA and can be used in other NZDSA publications.

Models with Down syndrome light up NZ Fashion Week CHAT 21 | Issue 79, Spring 2019

Ruth Oâ€™Gorman

Co-organiser Daniel Hopkirk gets the party going

Amber Rimmer

Fifteen models with intellectual disabilities walked the catwalk at New Zealand Fashion Week recently as part of The Living Colour show, celebrating diversity. They wore local designers from Zambesi to Kate Sylvester in New Zealand's biggest showcase. "I'm very excited," one model told One News. "I feel nervous I guess about catwalking but I am relaxing now," another said. After the show, there was a dance party for three hundred guests. The show was organised by Dance For Abilities which is a not-for-profit organisation set up to give people with intellectual disabilities the opportunity to have a night out. Founders Jonathan and Daniel Hopkirk were inspired by their sister Rosa, who was born with Down syndrome. "We'd often go out, where there was often that barrier for her where that didn't happen. So effectively this kind of creates that opportunity for people like Rosa to experience what we experience on a day to day basis," Daniel said. "Missy Boo, as her nickname is, or Rosa... we basically think she's the Queen of sass so she runs the cutter at home. She keeps us honest," Jonathan says.

Rosa Hopkirk

Designers have welcomed the show to the fashion world. Brittany Cosgrove from Nope Sisters Clothing says the show is usually known as not being very inclusive. "It's sort of known for being very exclusive and highend... so it's really good to see some actual changes being made." "It just knocks down a lot of barriers and a lot of walls to people's perspectives on what they think disability might be," Daniel added. Copyright: TVNZ

Models with Down syndrome light up NZ Fashion Week

Ageing Down syndrome population raises dementia issue By Coen Lammers

The extra chromosome that causes the developmental and health issues associated with Down syndrome also carries the Alzheimer’s genes, so people with Down syndrome often develop dementia at an earlier age. Research shows that about one third of people with Down syndrome over 50 years develop dementia, which is creating new questions and challenges for families, support workers and health services. Currently in New Zealand, there is no coordinated effort from the health authorities to prepare the sector for the ageing population with Down syndrome, so people on the frontline are left to come up with their own solutions, in their own community. Hohepa Canterbury in Christchurch provides residential support and other services for people with intellectual disabilities and may be the only organisation in the country with a dedicated dementia friendly service for people with Down syndrome. General manager Arnah Trelease explains that people with Down syndrome and dementia need specific care and staff need specialist training, which Hohepa originally was not able to offer. “When the first people at Hohepa presented with dementia, they had to move to rest homes, where sadly they would usually pass away within six months,” says Trelease. Moving their clients away from Hohepa, however, was contrary to the commitment the organisation had made to its members that they could live out their days in their own environment. “Dougie Brown was one of our original clients back in the 1960s and when he started developing dementia,

CHAT 21 | Issue 79, Spring 2019

As life expectancy of people with Down syndrome is increasing, the number of them developing dementia is also growing.

his mother Gendy reminded us of our commitment to our people and really encouraged us to think about how we might provide this support.” Hohepa considered its options and decided to repurpose Dougie’s house, Rose Cottage, to provide dedicated support to people with dementia within Hohepa. “Dougie’s house mates had to move to different services on campus so this could happen, which got some resistance from the families, but they now tell us that we made the right decision,” says Trelease, who adds that the establishment of dementia friendly support was only possible thanks to close collaboration with the Canterbury District Health Board. “Tracey Hawkes from the CDHB has trained our staff in the Walking In Another’s Shoes programme to give them dementia related skills and helped us set up Rose Cottage.” Juliet Nelson is the Integrated Support Manager running Rose Cottage and she says the big difference with a normal rest home are the staffing levels and the fact that people stay amongst their own people in a familiar environment. The five clients who currently live at the cottage have two staff members, which is a significantly higher ratio than rest homes, which enables the staff to engage with the clients more one-on-one and find activities that fit the stages they are in. “They remain part of our community and live as a family. They can watch the meals being prepared and sit around the table to have dinner,” says Nelson. Hohepa has clients ranging from 17 to 82 years of age. “So they should not be moving out at the most

Arnah Trelease shows Coem Lammers one of the homes at Hohepa

vulnerable stage of their lives,” says Trelease. “They should be able live out their lives in a familiar environment,” says Trelease who adds that the demand for dementia care is increasing and Hohepa are about to open a second unit. “It feels like we’ve got a tsunami coming, and not just here. Other providers are contacting us because they may have one or two people getting dementia but are not able to set up their own dedicated services, so I think we will need a lot more collaboration in this space,” says Trelease. Geraldine Whatnell on the other hand feels that the flood is more likely to be a trickle. Whatnell is part of the National Dementia Working Group in the Mid-Central region and soon hopes to be the first qualified Nurse Practitioner for Dual Disability Development and Mental Health in New Zealand. She is also a national representative for the New Zealand Down Syndrome Association and says the most recent research indicates that the numbers of people with Down syndrome developing dementia may not be as high as assumed a few years ago. Whatnell says the numbers may be inflated because many people with Down syndrome are incorrectly diagnosed as having dementia. “Someone may present as being confused or off their food and doctors often go straight to dementia because they see someone with Down syndrome. In many cases, however, there could be other health reasons that can be easily reversed,” says Whatnell. She says that people with Down syndrome are often diagnosed too late because they do not have the language skills that indicate any changes. “So

caregivers and health providers need to look for other indicators.” An early warning sign for dementia is often epilepsy and starts presenting itself in the late 40s. To help the doctors with their assessment, Whatnell hopes one day soon that every person with Down syndrome will complete the Dementia, Screening Questionnaire for Individuals with Intellectual Disabilities (DSQIID) when they are around 30 years. “And once you have that baseline, doctors can compare with the DSQIID results when that same person presents later in life,” says Whatnell, adding that early diagnosis can lead to better support, better quality of life and less anxiety for the families. Unfortunately, the Ministry of Health does not have data on how many people with Down syndrome in New Zealand have dementia. “However, there have been studies showing most older people with Down syndrome will also have dementia at the time of death,” says. Toni Atkinson, Group Manager Disability Support Services at the Ministry of Health. Atkinson says the Ministry is aware of the misdiagnosis issue, but hopes the DSQIID baseline will help health professionals and support workers to notice any earlier decline in functioning. “New Zealand has a growing and ageing population and we recognise that people with Down syndrome and their families will also be looking to the future and what supports are available.”

Ageing Down syndrome population raises dementia issue

Dementia in people with Down syndrome: What does the research tell us? Dementia is more common in people with Down syndrome than the general population. Liz Evans and Tanya Duckworth review research on why this is the case, along with recommendations for how families can support a loved one with dementia. The term dementia doesn’t refer to one specific disease but a set of symptoms caused by a number of different brain disorders. Dementia results in a decline in a person’s mental abilities – their capacity to think, reason, and remember. Most people with dementia will experience changes like: • declines in memory, with more recent information or events being harder to remember • difficulty concentrating • difficulty finding the correct words to say • reduced capacity to plan, to pay attention, and poorer judgement • feeling less motivated • personality and behaviour changes. When dementia occurs in people under the age of 65, it is called ‘younger onset dementia’. There are many different types of dementia with different patterns of symptoms. The most common form is Alzheimer’s disease. People with Alzheimer’s disease show progressive memory loss and a gradual decline in other skills. Their brains show changes in the form of a build-up of sticky plaques between the brain cells and tangles within the cells1. Dementia is not a normal part of ageing. Normal ageing does mean that the brain slows down, and it is common to find it harder to remember things as we age. However, forgetting recent events and conversations, forgetting the names of family members, and losing skills we once had are not normal at any age. But changes in a person’s memory and thinking skills can also be caused by other medical conditions, many of which can be successfully treated. Examples include: • a vitamin or mineral deficiency • a mental health problem such as depression • problems with sight or hearing • a side effect of new medication, or even a change in how their body deals with existing medications • underactive thyroid (hypothyroidism)

CHAT 21 | Issue 79, Spring 2019

Some of these conditions are more common in people with Down syndrome than the general population. So, any time a person is showing a decline in their thinking or memory, or changes to personality and behaviour, it is important to talk to their doctor about it straight away.

How common is dementia in people with Down syndrome?

Dementia, particularly Alzheimer’s disease, is much more common in people with Down syndrome than the general population and it tends to occur at a younger age. Scientists believe this is because a gene on chromosome 21 called the amyloid precursor protein (APP) gene plays a major role in the brain changes associated with Alzheimer’s disease. Genes are a code for proteins, and because most people with Down syndrome have three copies of this gene, they get more of its protein1. Different studies have found very different rates of dementia in people with Down syndrome, ranging from under 10% up to 49 years of age, to around 30% for those in their 50s, and over 50% for those aged over 602. One recent study found a rate of just over 50% in those over 60 years3, but another recent study found a rate above 80% in those over 654. The average age for diagnosis is in the mid 50s4. Research suggests that virtually all people with Down syndrome have a build-up of amyloid plaques in their brain by about the age of 401. Yet for most, the outward symptoms of dementia do not start for some years after this and some studies report people who live into old age without developing symptoms3. So, it is not inevitable that a person with Down syndrome will get dementia but, due to the increased risk, it is still likely.

What are the signs of dementia in people with Down syndrome?

In people without Down syndrome, the earliest signs of Alzheimer’s disease are usually memory problems. But in people with Down syndrome, the first signs noticed by carers are more likely to be changes in behaviour and personality, such as increased stubbornness and behaving inappropriately. Other early signs include difficulty paying attention and lower ability to plan, solve problems, and make judgements5 6.

Lucy Smellie

Other changes may include 5 6: • apathy • social withdrawal • increased dependency • confusion • prolonged sadness • fearfulness • repetitive speech • getting lost or disoriented in familiar places • irritability or aggression • seizures for the first time in adulthood

What is the latest research on dementia in Down syndrome focused on?

Scientists are working in a number of areas to further knowledge about the link between Down syndrome and dementia. Two important areas of current research are regarding diagnosis, and possible future treatments. Our own research team is conducting the Successful Ageing in Intellectual Disability (SAge-ID) Study. One of the aims of that study is to compare different screening tools and assessments that may be suitable for people with intellectual disability, including those with Down syndrome. A further aim is to look at the factors associated with a higher risk of dementia in this group. People with intellectual disability aged over 40 can participate in the study, including those with or without dementia. This is to ensure a good

mix of those who are healthy and those experiencing declines. Other researchers are looking at different biological markers that might be able to identify the brain changes associated with Alzheimer’s disease much earlier, even before cognitive symptoms begin. Examples include protein changes in a person’s blood, new types of brain scans, and measuring brain waves through EEG. If such measures could reliably detect brain changes earlier, then this could one day aid in directing specific therapies during the window before symptoms start1 7. It could also help researchers as they try to develop and test future therapies focused on preventing dementia. Certain medications can help to slow the rate of cognitive decline in some people who have dementia. However, studies with people with Down syndrome have found inconsistent results about whether these medications are effective, though some case studies suggest they may be for some people8 9. However, people with Down syndrome may have an increased risk of side effects from these medications9. Newer research is trying to develop future treatments that could prevent or alter the course of Alzheimer’s disease7, not just address the symptoms. Much of the research on drugs and neurotransmitters (brain chemicals) is done initially using mice. The safety and usefulness for humans then needs to be established. A handful of studies have also looked at whether antioxidants could prevent or slow Alzheimer’s

Dementia in people with Down syndrome: What does the research tell us?

Roslyn Marshall

disease in people with Down syndrome10. So far, the results have not found that antioxidants worked to prevent decline8. Instead, results have pointed to the highly complex nature of the brain changes that lead to cognitive decline in people with Down syndrome. Much more research will be needed before scientists can identify specific supplements that may reduce dementia risk in people with Down syndrome. Are there factors that increaseâ€“or decreaseâ€“the chances that a person with Down syndrome will develop dementia? There is only a small amount of research about risk factors specific to people with Down syndrome. A handful of case studies suggest that people with atypical forms of Down syndrome may have a lower risk of developing Alzheimerâ€™s disease11. Other studies have looked at the role of particular genes known to influence risk in the general population, but results are not always consistent across studies. Results regarding the potential influence of gender, hormones, and level of intellectual disability have also varied between studies. However, much of what is known about dementia in the general population could also apply to those with Down syndrome. There is a considerable amount of evidence from the general population to support the protective effects of a healthy lifestyle. Research regarding people with Down syndrome is lacking but the World Health Organisation12 recommends that people with intellectual disabilities should focus on similar targets. A healthy lifestyle aiming to reduce dementia risk would include good nutrition, regular exercise, and

CHAT 21 | Issue 79, Spring 2019

not smoking12 14. People (in the general population) who regularly do moderate-intensity exercise have a lower risk of dementia. They also have a higher brain volume in areas related to memory, planning, and learning. The Mediterranean diet has also been found to reduce dementia risk in the general population as has staying socially active and engaging in stimulating activities for leisure, work, or education13. One of the most important elements of a healthy lifestyle is preventative health care including regular medical check-ups. Good physical and mental health throughout life is associated with a lower dementia risk in the general population13. People with intellectual disabilities often have undiagnosed or untreated health conditions which could be treated. Sensory problems and physical disabilities can also compound their health and quality of life. In the general population, cardiovascular disease is a particularly important risk factor for dementia15. In general, people with Down syndrome have an overall lower risk of cardiovascular disease than the general population. However, it is reasonable to assume that for those people with Down syndrome who do have risk factors for cardiovascular disease, these factors would increase the risk of dementia. Such risk factors include a family history of heart disease and stroke, having diabetes, low levels of physical activity, a diet high in saturated fats, and smoking16. Obstructive sleep apnoea is also known to increase the risk of dementia in the general population and it

Lucy Smellie and Juliet Nelson (RN/Integrated Support Manager)

is very common in people with Down syndrome. It is possible that this could be an important additional risk factor for people with Down syndrome15. Medical management of obstructive sleep apnoea is based on an individual sleep study.

How can families identify the early stages of dementia and differentiate those from mental illness or other problems?

Diagnosing dementia in people with Down syndrome can be difficult. The standard tools for assessing cognitive function in the general population are not suitable when someone has an intellectual disability. What is needed is to compare the personâ€™s functioning to what it was before symptoms began9, but the personâ€™s typical level of function may not be well documented. As a result, health professionals rely on information provided by family, carers and other people who know the person well, to help come to an accurate diagnosis6. So it is important for the people close to the person with Down syndrome to know the early signs of dementia and to consult a doctor about any changes observed or any other concerns. The earliest noticeable signs in people with Down syndrome may be behavioural or personality changes. If a person with Down syndrome consults a doctor when these changes are observed, then memory and other cognitive testing can be carried out at regular intervals to help to determine if decline is also occurring5. There are tools available such as the Early Detection Screen for Dementia recommended by the National

Task Group in the US. This is a tool that can help you to track your loved oneâ€™s skills and any changes in their functioning time. At present, the tool does not provide a cut-off score: rather, it is designed to facilitate talking about any observed changes with a health professional. While families and carers are critical to recognising changes in their loved one, consulting a doctor is essential to determining whether those changes might be dementia or something else. There are other conditions that may look the same as dementia, many of which can be tested for and treated.

What can parents/carers do to prepare for the management of dementia in their loved ones?

If your loved one develops dementia, the keys to supporting them will be early planning and working well with their doctor and other professionals. So encourage your loved-one to find an attentive doctor they feel comfortable with, and to continue to see that doctor for annual health checks. Early planning for any transitions begins with getting a diagnosis as early as possible. A baseline assessment of their skills when healthy is helpful. Use the free screening tool, and, if resources permit, arrange an assessment with a psychologist or psychiatrist. Current recommendations are that people with Down syndrome have a cognitive assessment around age 30, to establish their normal level of functioning before declines begin and again at age 4017. But if they start to show declines, the assessment could be repeated annually5.

Dementia in people with Down syndrome: What does the research tell us?

Build as much of a support network as possible around the person with Down syndrome. If dementia is diagnosed, talk with the person with Down syndrome about who is in their life and who they would like to invite to be involved in their care. Wherever possible, include the person as early as possible in the planning process. This may include discussions of end-of-life care18. Support your loved one to understand their diagnosis so that they may participate in this planning. An easy-read fact sheet with pictures can help (see the resources links below). Find out what your loved one’s preferences are regarding care options, endof-life planning, and what is important to them for their care18. Families can facilitate holding onto items, such as photos and holiday souvenirs, which may one day serve a purpose in a memory box or life story. These are tools which can assist someone with dementia who is beginning to lose their memory. They can also aid communication between a person with dementia and others, and may help paid workers to understand the person better18. Look into available services. People with Down syndrome have the right to access mainstream health services and aged care services. Those with younger onset dementia (before the age of 65 years) can also access aged care services if they have a diagnosis or suspected dementia. The National Younger Onset Dementia Keyworker Program can be accessed before a formal diagnosis is made. Of course, people with Down syndrome and dementia also remain eligible for disability-related supports. A range of allied health professionals may be involved in the care of someone with intellectual disability and dementia to promote their wellbeing. As dementia progresses, the care goal needs to shift from supporting independence towards providing care and eventually palliative care 19 20. Many people with Down syndrome and dementia may want to remain where they are living and their families may want this too21. However, if and when their care requirements can no longer be met in their current place, options will include transfer to an aged-care facility or another disability service. Long-term planning for such transitions is helpful. Dr Liz Evans is a NHMRC-ARC Dementia Research Fellow and Tanya Duckworth is a research assistant with qualifications in psychology and cognitive neuroscience. They are from the Department of Developmental Disability Neuropsychiatry (3DN), within the School of Psychiatry at the University of New South Wales in Sydney.

Resources

An easy read factsheet is available from the Alzheimer’s Society (UK) here: https://www.alzheimers.org.uk /site/scripts/ download_info.php?downloadID=1092 The screening tool recommended by the US National Task Group is available from this site: http://aadmd. org/ntg/screening Alzheimer’s Australia has made a video about dementia in people with intellectual disability. It can be viewed here: www.dementia.org.au/videos/collec tions?playlist=IntellectualDisability If you would like further information, or would like to talk to us about the SAge-ID study, please phone Tanya or Liz on (02) 9931 9160 or email us at sageid@unsw.edu.au. References: 1. 2. 3.

4. 5. 6. 7. 8. 9. 10. 11. 12. 13. 14. 15. 16.

17.

18. 19.

20.

21.

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Wilson, L., T. Annus, S. Zaman, and A. Holland, Understanding the process; links between Down Syndrome and dementia. Intellectual Disability and Dementia; Research into practice. London: Jessica Kingsley Publishers, 2014: p. 34-52. Sinai, A., T. Chan, and A. Strydom, The Epidemiology of Dementia in People with Intellectual Disabilities. Intellectual Disability and Dementia: Research into Practice, 2014: p. 24-33. Margallo-Lana, M., P. Moore, D. Kay, R. Perry, B. Reid, T. Berney, and S.P. Tyrer, Fifteen-year follow-up of 92 hospitalized adults with Down’s syndrome: incidence of cognitive decline, its relationship to age and neuropathology. Journal of Intellectual Disability Research, 2007. 51(6): p. 463-477. McCarron, M., P. McCallion, E. Reilly, P. Dunne, R. Carroll, and N. Mulryan, A prospective 20-year longitudinal follow-up of dementia in persons with Down syndrome. J Intellect Disabil Res, 2017. 61(9): p. 843-852. Lautarescu, B.A., A.J. Holland, and S.H. Zaman, The Early Presentation of Dementia in People with Down Syndrome: a Systematic Review of Longitudinal Studies. Neuropsychol Rev, 2017. 27(1): p. 31-45. Nieuwenhuis-Mark, R.E., Diagnosing Alzheimer's dementia in Down syndrome: problems and possible solutions. Res Dev Disabil, 2009. 30(5): p. 827-38. Castro, P., S. Zaman, and A. Holland, Alzheimer's disease in people with Down's syndrome: the prospects for and the challenges of developing preventative treatments. Journal of Neurology. 264(4): p. 804-813. Courtenay, K. and N. Eadie, Medication treatment of dementia in people with intellectual disabilities. Intellectual Disability and Dementia: Research into Practice, 2014: p. 62. Torr, J., Dementias, in Psychiatric and Behavioural Disorders in Intellectual and Developmental Disabilities C. Hemmings and N. Bouras, Editors. 2016, Cambridge Univrsity Press: Cambridge, UK. Ballard, C., W. Mobley, J. Hardy, G. Williams, and A. Corbett, Dementia in Down's syndrome. The Lancet Neurology, 2016. 15(6): p. 622-636. Schupf, N. and G.H. Sergievsky, Genetic and host factors for dementia in Down's syndrome. The British Journal of Psychiatry, 2002. 180(5): p. 405-410. World Health Organization, Ageing and Intellectual Disabilities - Improving Longevity and Promoting Healthy Ageing: Summative Report. 2000, World Health Organization: Geneva, Switzerland. Reppermund, S. and J.N. Trollor, Successful ageing for people with an intellectual disability. Curr Opin Psychiatry, 2016. 29(2): p. 149-54. Sisirak, J. and B. Marks, Health and wellness strand: recommendations from National Goals Conference 2015. Inclusion, 2015. 3(4): p. 232-249. Wilcock, D.M., F.A. Schmitt, and E. Head, Cerebrovascular contributions to aging and Alzheimer's disease in Down syndrome. Biochimica et Biophysica Acta (BBA)-Molecular Basis of Disease, 2016. 1862(5): p. 909-914. Trollor, J., C. Salomon, J. Curtis, A. Watkins, S. Rosenbaum, K. Samaras, and P.B. Ward, Positive cardiometabolic health for adults with intellectual disability: an early intervention framework. Australian Journal of Primary Health, 2016. 22(4): p. 288-293. Dodd, K., S. Coles, T. Finnamore, T. Holland, S.K. Gangadharam, M. Scheepers, . . . S. Wilson Dementia and people with intellectual disabilities: Guidance on the assessment, diagnosis, interventions and support of people with intellectual disabilities who develop dementia 2015. Towers, C. and H. Wilkinson, Planning ahead: Supporting families to shape the future after a diagnosis of dementia. Intellectual Disability and Dementia: Research into Practice, 2014: p. 161-182. Carling-Jenkins, R. and C. Bigby. Supporting people with intellectual disability and dementia: A training and resource guide PowerPoint presentation for managers of disability organisations.; Available from: http://www.karingal.org. au/media/529677/day_one_-_dsws_-_karingal_theme.pdf. Jokinen, N., M.P. Janicki, S.M. Keller, P. McCallion, and L.T. Force, Guidelines for structuring community care and supports for people with intellectual disabilities affected by dementia. Journal of Policy and Practice in Intellectual Disabilities, 2013. 10(1): p. 1-24. Carling-Jenkins, R., C. Bigby, and T. Iacono, Family experiences of supporting a person with Down syndrome and dementia in Australia. Intellectual Disability and Dementia: Research into Practice, 2014: p. 145-60.

Special Olympics celebrates inclusion

Unified Football

Striker Maureen takes on Christchurch City Councillor Yani Johnsson

To celebrate its 51st anniversary last July, Special Olympics International organised a host of events and activities focused on Unified Sports. In Unified Sports, Special Olympians compete alongside and against people with and without intellectual disabilities. Special Olympics New Zealand celebrated the Special Olympics Global Day of Inclusion with an exhibition football match in Christchurch on July 21. The New Zealand World Summer Games Unified

Special Olympics celebrates inclusion

football team took on an invitational team made up of local athletes and Christchurch City councillors on the famous cricket pitch at Hagley Oval. The match featured on TVNZ’s Seven Sharp programme and Frank Walmsley explained that as a unified partner in the team, he is part of the team, and not a coach. “We're there to play with the team, be part of the team. We make sure that everybody's getting passed to, keeping their heads up when they go a goal behind. Just there to support the others," said Walmsley. Special Olympics NZ Chief Executive Carolyn Young said that unified sport creates great opportunities for people to connect. “And we really saw that at the Christchurch match.” “The match provided an opportunity to showcase the benefits of making connections with a broader range of people in our community and demonstrates that we are better together.” Both teams had great fun and put in an amazing performance. At the end of the day the World Summer Games team came out on top with a 1-0 win. If you want to see the action on Seven Sharp, please follow this link https://www.tvnz.co.nz/one-news/sport/other/ unified-football-team-mixed-special-needs-athletescompeting-alongside-those-without

NEO Notes By Zandra Vaccarino

Down Syndrome Awareness Month great opportunity to shine

The 21st of March is our opportunity to celebrate World Down Syndrome Day (WDSD), but I have noted that in America, in addition to WDSD they also celebrate Down Syndrome Awareness Month in October. How wonderful to have an entire month to celebrate people with Down syndrome, to spread awareness and make people aware of the abilities and accomplishments of people with Down syndrome. So why not take the opportunity during October to create awareness in your community. A couple of suggestions include: • Posting a message on your Facebook page celebrating people with Down syndrome • Submitting a paragraph and a photograph of someone you know with Down syndrome participating in their favourite activities, which we can share in the ENews. Please email to Jess hello@nzdsa.org.nz

Mana Whaikaha – MidCentral

the launch of Mana Whaikaha, the prototype of the transformed disability support system. One positive outcome that we have already seen in our region is how groups of disabled people, families and whānau living in MidCentral have accessed capability funding which enables them to access training that will enable and empower them to exercise greater choice and control of their lives. In Palmerston North, I worked with a group of young adults with Down syndrome as well as parents, family and whānau to determine their training and empowerment needs, and together we prepared proposals for a funding application. The NZDSA was fortunate that our application was successful and we secured funds to run two programmes. One programme is with young adults with Down syndrome and they have called their programme the COOL Funshop.

COOL stands for Control, Our, Own, Lives. What is a Funshop?

In the MidCentral region, 1 October 2019 has been a significant day as it will be the first anniversary of

Well, it’s a workshop where participants learn new skills in a more relaxed and fun environment. Below are a few photographs of the participants

Lunch time at the COOL Funshop

Discussing EGL principles at the COOL Funshop

COOL funshop participants at a planning meeting

Discussing EGL principles

CHAT 21 | Issue 79, Spring 2019

Participants at the Present like a Pro funshop.

engaging in a range of activities.

STRIVE Update

STRIVE, the NZDSA’s self-advocacy group met in July, in Christchurch for a one-day meeting. The focus of the meeting was to progress the codesigned research project on friendships that they are currently conducting in collaboration with Massey University. The meeting also included meeting with Coen Lammers, the editor of CHAT 21, and Dan te Kaat, our graphic designer, so they could share their ideas on projects the NZDSA is currently working on.

More self-advocacy training

In August a group of self-advocates and the STRIVE members met in Auckland for a Funshop focusing on learning how to Present like a Pro. The Funshop included preparing impromptu speeches, debates, voice training, body language, presentation skills and learning more about rights. Another fun aspect the group is working on is creating a video about rights. Keep reading your

NEO Notes

ENews to see the enthusiastic performers! If you don’t receive the NZDSA Enews, please email Jess at hello@nzdsa.org.nz

Notices

Just a reminder to look at the NZDSA notices which include: • a call for expressions of interest in accessing the NZDSA Numicon kits • the NZDSA AGM • Nominations for the NZDSA National Awards. Finally, don’t miss the opportunity to attend the NZDSA Ball on the 2nd November at the Remuera Club in Auckland. It will be an evening of fun with entertainment by The Mermaid Dance Band, featuring ABBA Heaven. You can contact Linda if you want to purchase tickets, 0800 693 725 press 2 or email nzdsai@xtra.co.nz In closing, let me know how you celebrated Down syndrome month.

Auckland’s Tim Fairhall changes Kiwisaver rules By Joanne Holden

Tim and Joan Fairhall

An Auckland man with Down syndrome has won a change of rules that will allow anyone with a lifeshortening congenital condition to access their KiwiSaver funds before they turn 65. Tim Fairhall, who lives in a house in Te Atatū run by the Kōtuku Trust, is "positively dancing" after the Government announced in July that it would give early access to KiwiSaver to several hundred people with life-shortening conditions. He and his mother Joan Fairhall asked a Parliamentary select committee last year to change the rules to allow him and others with life-shortening conditions to access their KiwiSaver early - because they were unlikely to live until the normal retirement age of 65. Commerce Minister Kris Faafoi said the rules would be changed to create a new category for early withdrawal of KiwiSaver funds for anyone with a lifeshortening congenital condition. "I want to see Tim and others like him have the ability to use their KiwiSaver to support their wellbeing in their retirement – which is unlikely to be at age 65," he said. Joan Fairhall said her son was "positively dancing" at the news. "We are absolutely delighted for the sake of several hundred people, perhaps 1000 people, who will

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benefit from this," she said. "For Tim, it's fantastic because he can accomplish his dream of going and seeing his brother in Italy and his best friend in Canada." Tim, who turned 40 last month, has worked parttime at the Countdown supermarket on Te Atatū Peninsula for 15 years and has accumulated just over $10,000 in KiwiSaver. He wants to visit his brother Scott Fairhall an associate professor of cognitive science at Trento University in northern Italy, and his best friend, a former Kōtuku Trust support worker who married a Canadian and now lives in Canada. "It's been a long-held dream" she said. Faafoi said the new withdrawal category would have a set list of conditions named in regulations that would automatically qualify people for withdrawal. People would need to provide a medical certificate and other evidence to qualify for withdrawal. There would also be an alternative process for people who have a congenital condition not named in regulations to apply to their KiwiSaver provider to withdraw their savings. The change will be made following an amendment to the KiwiSaver Act 2006. COPYRIGHT: New Zealand Herald.

A Magazine By People With Down Syndrome, For People With Down Syndrome.

Dressing up to go to the ball By Andrew Oswin Andrew Oswin at this year's Unforgetaball

I attended the Unforgetaball 2019 at the Hornby Working Men’s Club. It is for families and friends of people with intellectual disabilities. It is about networking with other families and friends, having fun, dancing, singing, and having fun. Everyone all got dressed up all in their finery and had many photo opportunities. We welcomed back a band called, 'Girl From Mars', who once again played and sang for us at the ball. I had many dances with a number of lovely ladies and I got to dance to I Want To Break Free, Updown Funky Monkey, Tonight Is Going To Be A Good Night

Down Write Brilliant

and one of my favourite songs Mamma Mia. A light supper got provided and the caterers brought the food out to the tables so that everyone could help themselves. I would like to take this opportunity to thank the organisers Linda Te Kaat and Tania Grose for organising the Unforgetaball once again, which is one of the highlights for the year, as well as the decorators and photographers, the Hornby Working Men’s Club Sports Hall Staff for hiring the venue, the band Girl From Mars and a very special thank to everyone who attended. I really enjoyed it!

What an Unforgetaball Nightâ€Ś By Gabriel Beyer

I went to the Unforgetaball. I picked out the clothes I wanted to wear. I wore some nice shoes with some trousers and a nice shirt. I also wore a tie. When I arrived,I hugged Marinda. I told her she looked gorgeous. There was some dancing with some party music. We also had supper. After that we did some more dancing. Everybody got changed into nice clothes; ladies wearing dresses; men wearing suits and tuxedoes. There was an area where we could put our faces in a frame and get our photo taken. We h a d a b a l l l a st n i g h t : a n Unforgetaball!

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The Unforgetaball 2019

Down Write Brilliant

Earning respect in the Wellington dojo By Debbie Howard

The Down Right Dragons is a karate class for people with Down syndrome. The class is held every Sunday morning at the Wellington Seido, Brooklyn Dojo. It was started in 2008 by Maria Borshevsky, a Black belt in karate and a mum with a child who has Down syndrome, but when she started the class, it was not for her babe in arms but for others who have Down syndrome. Maria went on to have another baby so handed the class over to other Black belt instructors. My son Dan has attended right from the very start. It has been amazing to see his confidence and capability grow over the years. In October last year, he had another grading, achieving his Green Belt. To watch a grading is a very emotional and humbling experience. The dojo is full of energy and amazing vibes. To actually be doing the grading must be an incredible feeling for the participants and Dan takes it very seriously. Dan joins an exercise class for half an hour before his regular Down Right Dragons class, the exercise class is open to anyone who attends other classes in the dojo so he gets to experience working out with a range of people of various ages and abilities,

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including some amazing Black belts, giving him lots to aspire to. While I am allowed to watch the exercise class, Dan prefers me to not be in the dojo for the main class, when he is learning his Kata. After getting told off by him for talking, saying “mum I'm trying to concentrate here”, it was decided that myself and the other parents would go off for coffee, while the class was on. This has proved to be a great time for all, as we have a chat over a drink and share the ups and downs of our lives. Seido is a style of karate open to anyone, regardless of age or ability. With an emphasis on personal, individual development, Seido focuses on the capabilities of each person, encouraging everyone to see where their abilities can take them. Seido is what is practiced at the Brooklyn dojo making it a very special place, as are the people that attend and instruct the classes. Seido translates as ‘sincere way’ and has as its cornerstone the three principles of love, respect and obedience. That is exactly what we get at the dojo.

Dragons Daniel Howard gets green belt

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Megan scores a try in rugby debut By Joanna Holden

After four years as "camp mother" keeping the Roncalli College girls' rugby team hydrated, a Timaru 16-year-old with Down syndrome has made her debut on the field. Meghan Phillips burst into tears when her mother told her she would be donning yellow and blue stripes for the final five minutes of an hour-long match against visiting school Prebbleton on Friday. "I'm a wee bit nervous," Meghan said, ahead of the 3pm game. While the Roncalli College Year 12 student was "rugby-mad", she had only ever played the sport with her brother - so she enjoyed her first time practising and warming up with a team. "I like playing rugby with all the girls." Although her team lost, Meghan scored the game's final try - ploughing through half a field of opponents to ground the ball. Meghan also got a shock when she learned her father and brother had travelled from Christchurch to watch her big moment, and sprinted over to them for a reunion after the game. Roncalli girls coach Brad Sandri said Meghan had been getting water to the players and tees to the kickers since starting at the school four years ago, and was "a bit of a general camp mother". "She keeps everyone sorted. They're never thirsty," Sandri said.

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"She's definitely vocal on the sideline. She's 110 per cent their biggest supporter. You [Meghan] always point out when the referee is in the wrong." Sandri decided to slot Meghan into the team for the end-of-season match because she was "always asking" and he wanted to reward her "passion and commitment to the team". "I just enjoy seeing her smile and being happy. It must be like Christmas," he said. "If I can make it happen for her again, I will." He said Meghan's teammates did not treat her "any different" for her disability. "They give her s..t and she gives as good as she gets. She's funny as." Another rugby fanatic with Down syndrome recently in the spotlight was Zara Barrett, 16-year-old sister of All Blacks stars Beauden, Scott, and Jordie. The Barrett brothers shared their sister's story to raise awareness about the disability, which causes delays in development and learning, and the education trust UpsideDowns.

The Strive team

STRIVE works on Advocacy Message for people with Down Syndrome By Andrew Oswin

STRIVE works on Advocacy Message for people with Down Syndrome Recently, I attended a STRIVE funshop at the Sudima Airport Hotel in the Garden City of Christchurch. It was held over two days and I got to catch up with my STRIVE friends that I have not seen for a while. We were mainly working on Progressing Research, Advocacy Message and Successive Planning. We have been reviewing the Friendship Research in which we had to interview 45 people with Down syndrome during 2018. We had some really good results and I found it veryÂ nail-biting such as sitting on the edge of the chair. We agreed for Zandra and Franco Vaccarino to go around Palmerston North to interview 10 more people to increase this research. At the moment, we are looking forward to putting out an Advocacy Message and to write a report for the Annual General Meeting but we will do this during August in Auckland. This will be a merging funshop with other selfadvocates who are coming from all over New Zealand. All of us got to write a report for Down Write Brilliant which we prepared. Dan te Kaat came to talk to us. He told us that the New Zealand Down Syndrome Association will be updating their website so that there will be a

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special page for us to let other people know about our history and supporting the New Zealand Down Syndrome Association. Coen Lammers had a discussion with us about what he does for CHAT 21, the quarterly journal, that gets sent all over New Zealand. He told us that it is for people with Down syndrome and their families. Everyone has the right to write their own articles, stories, experiences and interviews which they can put pictures in if they would like to. I like advocating for people with Down syndrome for eleven years since 2008 and being a member of STRIVE for seven years since 2012. I really enjoy being a great asset, leader, advocate, ambassador, role model and mentor to other people with Down syndrome in their communities. I have learned to use my advocacy skills to be a good mentor and role model towards the new selfadvocates who will be the future members of this national organisation. I would like to thank all of the support buddies and the generous support we have had from Zandra and Franco that they have given to us. Andrew Oswin is the STRIVE Editorial Committee Member, Disability Consumer Consortium and Down Syndrome International RepresentativeÂ

Me & my job By Joel Forman Where do you work? McDonalds Sydenham in Christchurch How long have you been there? 2 years How many days a week do you work? Two days, Monday and Tuesday. What hours do you work? I start at 11am til 2pm, so three hours. How do you get to work? I bike or bus to work How did you get the job? Through Roger Walker and Tracy Jane from Skillwise. What are your duties? I clean the bathrooms and trays.Â I put the dishes away into the sink and I do the vacuuming in the playground and I also sweep the floors and I wipe the tables.

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Joel at work at McDonalds Sydenham

Helping children with Down syndrome reach their full potential in early childhood centres and primary school

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

Helping children with Down syndrome reach their full potential in early childhood centres and primary school

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-bystep and that the child is watching, listening and attending. Be aware that children with

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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

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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

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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 susan.fostercohen@ championcentre.org.nz for more details.

Helping children with Down syndrome reach their full potential in early childhood centres and primary school

HEALTH: Keratoconus research looking for 100 more participants By Joyce Mathan

Thank you to our participants and support persons for helping us to advance this first in New Zealand eye research project. Comprehensive assessments for an eye disease called keratoconus has been carried out for over 100 individuals with Down syndrome. It has been an honour and a pleasure working alongside you in this ground-breaking initiative. Registration for this study is still open and we are still in search of participants. We hope to involve at least 200 individuals with Down syndrome by February 2020. Please contact us for further information or to book an appointment. This project aims to determine how common keratoconus is, specifically in individuals with Down syndrome and the nature of how the disease progresses. The cornea is the ‘clear window’ of the eye and is located in front of the coloured part, the iris. In keratoconus, the cornea becomes thinner and weaker so it begins to protrude, changing its shape from round to pointed/cone shaped. This shape change is the reason for reduced vision, which worsens as the disease progresses and the shape of the cornea becomes more distorted.

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Great idea to get my eyes tested By Vinzenco Vaccarino

Keratoconus has no symptoms other than reduced vision so special tests are needed to detect it. Some research suggests that keratoconus is more common in individuals with Down syndrome. A surgical procedure known as corneal collagen cross-linking can be carried out in most cases to slow down the rate that keratoconus gets worse or stop deterioration of the disease entirely. This procedure strengthens the cornea to prevent further shape change. If keratoconus is present, participants and support persons will be informed. Repeat visits may be advised if monitoring for any change is required. If there are signs of disease progression, a referral will be made for treatment. The study is open to anyone with Down syndrome who is ten years or older and able to express agreement to participate. The participant will receive a general vision and eye health screen. The study is part of a PhD research project so the appointments are provided at no charge. If treatment by corneal collagen cross-linking is needed, it is fully funded by the public health system in Auckland. The appointments will occur at the University of Auckland, Grafton Campus. However, individuals both within and outside the Auckland region are welcome to participate. Project team:Joyce Mathan, Heather Reynolds, Dr Samantha Simkin, Dr Akilesh Gokul, Professor Dipika Patel, Professor Charles McGhee.

A few weeks ago, I went to Auckland University for a special eye test for people with Down syndrome. Dr Joyce Mathan told me I was number 101 to do the test. My Dad came over to support me. I meet Dr Joyce and Heather who told me about the eye tests for research. They used lots of different machines to check my eyes. One machine had a camera with a blue light. One machine I had to open my eyes wide open and looked at a spot and then Dr Joyce had to take a photograph straight away. Another machine gave me a big shock when air hit my eye but it didnâ€™t hurt. I was happy to do all tests to check my eyes to see if they ok. I had to do lots of tests and exercises for my eyes. None of the tests hurt. I was happy to go to Dr Joyceâ€™s office, she was an amazing eye doctor. Heather and Joyce were so kind to me. When I left they give me a $20.00 Countdown voucher. I want to say it is a good idea for you to have your eyes tested to see if it is ok and to help with the research.

Thanks to:

Contact: Joyce Mathan joyce.mathan@auckland.ac.nz +64 9 373 7599 ext 85017 HEALTH: Keratoconus research looking for 100 more participants

Brendon and Kim at this year's Unforgetaball.

President's pen By Kim Porthouse

Isnâ€™t it great to be into spring with longer days and warmer temperatures. Brendon and I have just returned from a lovely sunny weekend in Christchurch where along with visiting family, we took the opportunity to attend the Unforgetaball, an event that has been organised by two local Canterbury mums â€“ Linda te Kaat and Tania Grose for over 10 years. Brendon and I had a fabulous time and it was delightful to see everyone dressed up in their finest, having such a wonderful time dancing and socialising. I would like to express my thanks to Linda and Tania for their ongoing commitment to this event, I know

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it takes a significant amount of time and effort to organise it. The ball is an obvious highlight for the local Down syndrome community. If you have ever considered organising something similar in your local community I say find a way to make it happen, it will be so rewarding! As many of you will be aware the government has before it the Abortion Law Reform Bill. A few weeks ago I did an interview on Radio New Zealand in relation to the NZDSAâ€™s position in response to media statements by Saving Downs that Jacinda Ardern had gone back on her pre-election promises to the disability community not to increase

the time limit for disability-selective abortion. Whilst we share concerns over the impact of prenatal screening on the birth rate of people with Down syndrome, the NZDSA felt they needed to highlight different issues than those raised by Saving Downs and I attempted to concentrate on our advocacy position that women should receive value based counselling when considering screening or termination based on a diagnosis of Down syndrome. The NZDSA distinguishes itself from Saving Downs as an organisation that represents the views of the wider Down syndrome community across a number of issues including health, education and human rights. The NZDSA primarily is an organisation set up to provide support and information and has also evolved to have an advocacy role. We want to be recognised as the authoritative voice in NZ on issues that concern people with Down syndrome and speak from a well-considered and balanced platform. We also work to raise awareness of the rights of people with Down syndrome to be recognised as contributing members of society with a voice that should be listened to by those making policies on issues that concern them. As the Abortion Law Reform Bill is currently going through Parliament the NZDSA committee discussed the relevance of the bill to the Down syndrome community at our recent meeting. After considering the issues the committee felt that the changes in the bill have the potential to impact termination rates based on a diagnosis of Down syndrome, and set up a subcommittee to examine the new reforms to make a submission to Government. For your information I have outlined changes in the Abortion Law Reform Bill that we consider relevant to our community. Firstly let me state that the NZDSA does not take a position on the rights of women to terminate a genuinely unwanted pregnancy. We recognise the fact that abortions do and will continue to take place in New Zealand and that under New Zealand law, women have rights to make choices relating to health services. We do however want to raise concerns that as a result of prenatal screening, terminations of otherwise wanted pregnancies take place due to a diagnosis of Down syndrome. Current abortion legislation requires two practitioners to be satisfied that an abortion is required to maintain the pregnant woman’s physical and mental health and well-being. The proposed changes mean that a woman can refer herself for an abortion without the need to see any other doctor other than the health practitioner performing the abortion up till 20 weeks

President's pen

gestation. She can also still seek and obtain an abortion after 20 weeks provided that one registered health practitioner signs it off on well-being grounds. This has the potential for late-term abortions to occur at any gestation, including late-term abortion on the grounds of disability. Under New Zealand law, when providing health services, a health practitioner is required to ensure the woman makes an informed choice and gives informed consent. This will still be a provision for health practitioners providing abortion. The new legislation only provides that a health practitioner must advise a woman about the availability of counselling services if she seeks advice or information about whether to continue or terminate a pregnancy; or wishes to terminate a pregnancy. The focus of our submission will be in line with our position statement on termination i.e.

“The New Zealand Down Syndrome Association does not consider Down Syndrome in itself a reason for termination.” We will express concern over the removal of the requirement for consultation with a health professional prior to 20 weeks gestation and seek to have this gestational limit reduced should reform go ahead. We will also seek to see a gestational limit put in place for abortion to take place and will advocate that any viable gestation should not be aborted on the grounds of disability, especially Down syndrome. In addition we will strongly advocate for mandatory counselling for a pregnant woman considering termination due to a diagnosis of disability, so that the process of giving informed consent can be upheld. If a woman rushes into a decision to terminate she can later have feelings of regret and guilt which negatively impact her mental health and well-being. We would strongly recommend that the counselling should have a value-based component and women must be given information on how to make contact with disability support organisations such as the NZDSA.

Genuine inclusion key to successful primary school education In her third article on education, Margi Leech provides tips for families to get their children truly included and get the most out of 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 (inclusive.tki.org.nz).

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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. In both places, explicit teaching is important. What can I do as a parent supporting the learning? • Provide a good breakfast with lots of protein to sustain their hard work throughout the day. • Ask the teacher for a goal for each week to do the same at home. • 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.

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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 P l ay w i t h m e a s u r i n g s p o o n s , j u g s , 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

Genuine inclusion key to successful primary school education

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: • Making sequences of patterns. • Matching Numicon shapes and pictures of Numicon. Learning the colour names. • Learning about ‘bigger’, ‘smaller’ and ‘biggest’ and ‘smallest’. • Putting the shapes in order. • Naming the shapes by number. • Making the Numicon patterns with counters and objects. • Matching the patterns to the shapes and numerals • Joining and separating the patterns to learn addition and subtraction • Balanced to show ‘equals’ • Repeated addition and subtraction leading to multiplication and division. • Fractions. Numicon sets can be borrowed from Linda de Kaat at the NZDSA as well as other DSAs. You can purchase in New Zealand from Edushop and use the

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PARENT code to receive a discount. 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 can 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.

Heidi comes third

Heidi (7) recently competed in a karate tournament at the World Marudao karate dojo in Berhampore, Wellington. She came 3rd place for her â€˜kataâ€™ (pattern) she has lots of support from everyone at the dojo and also her little brother who attends the same class.

Our people

Sanctuary movie potential game changer in IHC library Here are some newish library items that the library team has enjoyed. Sanctuary was a game changer for people with learning disabilities in Ireland. For folk who enjoyed The Specials, The Dreamhouse is worth viewing.

Sanctuary: never let love pass you by (DVD)

Larry and Sophie are in love. They bribe Tom to book them into a hotel for an afternoon's tryst and look forward to getting to know each other, like countless couples before them. But Larry and Sophie aren't any couple; they both have intellectual disabilities. Larry has Down syndrome, Sophie has epilepsy and Tom is their carer. In a world that conspires to keep them apart, will love triumph? “The actors of Galway's Blue Teapot Theatre Company bring humour and pathos to a groundbreaking story of a couple's illicit overnight stay in a hotel. Sex between learning disabled adults was illegal in Ireland until February 2017 and [this film] helped change that law." – DVD viewing time - 87 minutes

The Dreamhouse (DVD)

In this refreshing 6-part series narrated by Adam Hills, 3 young adults with intellectual disabilities fly the nest and move into a new home for 10 weeks. Experiencing life away from parents and learning to live more independently is a dream for all of them. And if it works out, they can stay on and call The Dreamhouse home. Over 10 weeks these three very different people go on a huge learning curve as they explore how to manage a house and how to live with each other. They party, fight, flirt, and above all grow exponentially in the process, and reveal a vibrant new world that is theirs alone.

CHAT 21 | Issue 79, Spring 2019

I love you Natty: a sibling's introduction to Down's syndrome by M i a a n d

Hayley Goleniowska. "If you are looking for a book that will get down and dirty about the challenges that families or siblings might fa ce w h e n we l co m i n g a child with special needs into their family, then this is not the book for you. This book is innocence personified as it is written (primarily) by the older sister of a little girl who was born with Down's Syndrome. What you have as a result is all the adult pretensions stripped away, and just an open, personal and honest view from a loving sibling who sees her little sister for what she is... a funny (occasionally annoying) little sister." - Amazon.com

Mud boy: a story about bullying Sarah Siggs

Mud Boy is an illustrated book for ages 5-11, showing how children can go from being joyfully buoyant to totally deflated when being bullied and teased, and offering advice to get them back to their best. Mud, music and a family cat are used to conjure up the story to children in a very new and real way, showing that recovery happens through talking to others about our problems. Please contact the IHC library team (Phil, Ros, Ann and Michael) on 0800 442 442, email them at librarian@ihc.org.nz or visit the online catalogue at https://ihc.mykoha.co.nz/

You can watch their library video at https://www. youtube.com/watch?v=AunmBYTIZTM

NZDSA notices Don't forget the NZDSA Ball I hope you will join us at the NZDSA Ball which will be held on the 2nd November at the Remuera Club in Auckland. It will be an evening of fun with entertainment by the very popular The Mermaid Dance Band, featuring ABBA Heaven. You can contact Linda if you want to purchase tickets, 0800 693 725 press 2 or email nzdsai@xtra.co.nz

Rose Award

Numicon kits Yes, now is the time to start thinking about whether you would be interested in loaning the NZDSA Numicon kits for 2020. Numicon is a multi-sensory, structured maths programme. If you would like to know more about Numicon the website is http://www.numicon.co.nz/ If you would like to loan a kit please contact Linda te Kaat for more information at nzdsai@xtra.co.nz or on 0800 693 725 press 2.

Top 10 Maths Applications

You will note that no one was nominated for a Rose Award in this edition of CHAT 21. So, I would like to encourage you to nominate a deserving individual or organisation for the next edition of CHAT 21.

The NZDSA would like to know your favourite apps for maths. Please email your list to Jess at hello@nzdsa.org.nz

The Rose Award provides the opportunity to thank individuals or organisations who either support individuals with Down syndrome or the Down syndrome community. Please email nzdsi@extra.co.nz your nominations for an individual, family, or organisation explaining what they have done to “promote the participation of people with Down syndrome in their community”. We will acknowledge the person in CHAT 21 and will post them a letter outlining why they were selected and include a box of Rose’s chocolates.

Thanks to the following funders and sponsors who have made donations to the NZDSA this financial year: • Joyce Fisher Charitable Trust • Lottery Minister’s Discretionary Fund • NZ Lottery Grants Board • Holdsworth Charitable Trust • Thomas George Maccarthy Trust • Pub Charity • Southern Stars • Enable NZ - Mana Whaikaha • COGS Christchurch • COGS Hamilton • COGS Manukau • COGS Manawatū/Horowhenua • COGS Otago • COGS Whangārei • COGS North Shore • COGS Wellington • COGS Southland

2020 National Achievement Awards

The NZDSA is calling for nominations for the NZDSA 2020 National Achievement Awards. These awards recognise the accomplishments of people with Down syndrome during 2019. If you would like to know how to nominate a person please email Linda te Kaat at nzdsai@xtra.co.nz

Thanks

The NZDSA has a Facebook page that serves as a community forum and notice board for relevant issues, events and stories. Please check it out at facebook.com/NZDSA

NZDSA notices

NZDSA Committee

Contact directory

New Zealand Down Syndrome Association PO Box 4142, Shortland Street Auckland, 1140 0800 693 724

Gwen Matchitt

Kim Porthouse

Angela Hawke

Diane Burnett

President

Zone 1 Representative

Wellington & Wairarapa

Northland

Northland/Auckland

021 297 0298

027 246 0160

022 034 6475

president@nzdsa.org.nz

northland@nzdsa.org.nz

auckland@nzdsa.org.nz

Treasurer

Kerry Ryan

Shelley Waters

Zone 3 Representative

Zone 4 Representative

Zone 5 Representative

Zone 6 Representative

Whanganui, Manawatū, Gisborne

Wellington & Wairarapa

Ashburton & all areas above

All areas below Ashburton

& Hawkes Bay

021 108 9505

021 046 0482

027 627 3069

027 356 3229

zone4@nzdsa.org.nz

zone5@nzdsa.org.nz

zone6@nzdsa.org.nz

Vice President Zone 2 Representative Waikato, BOP & Taranaki 027 244 4543 zone2@nzdsa.org.nz

Geraldine Whatnell Averill Glew

zone3@nzdsa.org.nz

NZDSA Staff

Linda te Kaat

National Executive Officer

National Administrator

0800 693 724 ext. 1

0800 693 724 ext. 2

neo@nzdsa.org.nz

nzdsai@xtra.co.nz

Regional Liaison Officers

Jess Waters

Zandra Vaccarino

Christel van Baalen

Donna Higgs-Herrick

Sandra Slattery

Auckland Community

Canterbury Community

Taranaki Community

Liaison Officer

09 527 0060

021 208 8203

027 604 5786

clo@adsa.org.nz

cdsainc@gmail.com

taranakidownsyndrome@gmail.com

NZDSA Membership

Membership charges are as follows: $30 one year Financial membership fee, $50 one year Affiliate membership fee, $15 one year Self-advocacy membership fee. To obtain full details and a membership form please either email – nzdsai@xtra.co.nz or telephone 0800 693 724 ext 2.

Database Updates

The NZDSA would like to update their database. If your details need updating please contact us either by email – nzdsai@xtra.co.nz or telephone 0800 693 724 ext 2.

CHAT 21 | Issue 79, Spring 2019

Social Media and Information Officer 021 032 8539 hello@nzdsa.org.nz

Daniel te Kaat Graphic Designer 021 22 333 93 daniel@slaughterhaus.co.nz

Coen Lammers CHAT 21 Editor 027 730 239 editor@nzdsa.org.nz

Donations

The NZDSA receives no Government funding and relies solely on donations and grant applications to keep us running. If you are able to make a donation please either send a cheque to us at P O Box 4142, Shortland St, Auckland, 1140 or direct credit to ASB 123073 0090784 00 using your surname as reference. If you require a receipt please email us to let us know you have made a donation via internet banking by telephoning 0800 693 724 extension 2 or emailing nzdsai@xtra.co.nz. If sending us a cheque please include your address so a receipt can be posted to you.

Me and my pet

Aidan Walshe and Milo

Eden Davis, 3 years old

Aria Morgan with Mack

Jacobien Beekmans with cat Pippi

Leo and Tiff and Caz 2018

My and my pet

Jada Burnett on Mini

Renee van den Bogaart with her dog Fran

Our people

All Star Legacy Heroez Cheer Group after a recent performance. The group includes David, Charlie, Jada, Miles and Issy from the Auckland Down Syndrome Association.

Even a broken arm cannot stop Dain Whiting from Hamilton

Caleb Hall looking uber-cool