The New Zealand Down Syndrome Association has launched a wonderful new resource to fill a “huge void” for health professionals when dealing with new parents of a child with Down syndrome.

“We have received overwhelming feedback from parents and whānau that the health professionals they deal with in those whirlwind first days, often do not have the information they need, so we hope that this will help both parties fill this huge void,” says Zandra Vaccarino, the NZSDA’s National Executive Officer.

Vaccarino says that new parents deal with a variety of health professionals, from their midwife, early intervention team and paediatrician to the Plunket nurse and GPs.

“Often these professionals seem to think that one of the other will have given given parents and whanāu specific information on Down syndrome, but often the parents fall in a big information-free abyss,” says Vaccarino.

The National Executive says that the Down syndrome diagnosis is a surprise for many parents so they have lots of questions and need to learn more about Down syndrome as well as navigate where and how to access  support.

“Parents are looking for answers and support, but often the first conversations are unnecessarily stressful and very upsetting, when the health professionals have no information – or worse – provide misinformation,” says Vaccarino.

The new brochure, Tips For Health Professionals, provides professionals with resources, key contacts and useful tips on how to approach these vulnerable parents in a respectful and sensitive manner.

“In many cases, doctors, nurses or other support workers will have limited knowledge of Down syndrome and may not be aware of the amazing resources and support organisations available to the parents.”

A large section of the brochure covers the language professionals are suggested to use and what phrases to avoid, as they may be considered offensive or archaic.

The brochure also includes a milestone map specifically for children with Down syndrome.

“Usually parents are given a milestone list for typical children. Having a specific Down syndrome road map will provide parents with realistic expectations about their child’s development and hopefully avoid unnecessary concerns and frustration.”

Health professionals and anyone interested in people with Down syndrome can download Tips For Health Professionals, and other resources on the NZDSA website. The resources are free to download once you have registered your contact details.

 

 

In this edition of our regional focus segment, President Glen Jelley from the Otago Down Syndrome Association shares what they have been up to in Highlanders country.

My name is Glen Jelley and I am the current president and regional representative for the Otago Down Syndrome Association.

First, I would like to give you a bit of background on how the ODSA came to be.

Before the current ODSA there was an Otago Down Syndrome Association that had stopped operating before we became part of the Down syndrome community, but I understand they did a lot of amazing work around the Otago area.

On the 20th of August 2008 we were blessed with the birth of our beautiful daughter Jessica who has Down syndrome.

We knew before she was born there was a high chance of her having Down syndrome so had done a bit of research and soon after Jessica was born joined the New Zealand Down Syndrome Association and Upside of Downs.

When Jessica was around 7 months old, we were introduced to Karola and Graeme Franklyn with daughter Emily and Victoria Murgatroyd with her son Isaac. Karola, Graeme and Victoria went on to become three of the founders of the new ODSA in 2010.

We joined a few years after Karola and Graeme Franklyn, Victoria Murgatroyd, Jean Elmes and Karen MacDiarmid had started a social group that later formally became the Otago Down Syndrome Association.

Karola was the president, Graeme the treasurer and Jean the secretary. There was a lot of work put in in the early years to get the ODSA off the ground and build the membership to where it is today at around 75 families. The ODSA covers a large area from south Otago (Balclutha) to North Otago (Oamaru) and up to Central Otago (Queenstown, Wānaka, Alexandra).

There have been some awesome social activities in the early years with Halloween parties, ten-pin bowling, outdoor parties with the Highlanders visiting as well as fire engines and lots of great memories and friendships were made.

Karola was our president for around 5 years. As a professional teacher she was deeply passionate about education for our children (and all children) and spent a lot of her time researching and presenting seminars around adapting the curriculum and better learning practices for our children. There were often emails that would arrive at midnight from Karola (I swear she never slept). The ODSA are deeply in-debted to the work put in by the committee in the early years as we certainly would not be where we are now without them.

Jett Dawson a Balclutha local.

If I got my years right, I joined the committee at the AGM in 2014. At that time, we were focusing on monthly social events and running three to four seminars around education a year.

Around this time there were a lot of younger families and we had a lot of fun at our monthly social gatherings. As the children of the families got older the social gatherings became less as the now teenage youth moved onto likes of the UPP club, which was originally formed in Christchurch and is more focused on social and life skills.

There were not a lot of younger families coming through the ranks, so the decision was made to cut back on the social gatherings to one each quarter.

In 2015 Karola and Graeme made the decision to step down from the ODSA committee and I was elected president.

Isaac Murgatroyd-Mcnoe skiing.

The current committee consists of myself as president, Karl Walker as Treasurer, Jean Elmes as Secretary, Victoria Murgatroyd for Media, Lisa Gallacher for Education, Catriona McKee and Carlo Biggemann self-advocate.

We were lucky to get Lisa Gallacher on the committee in 2017 who is a private speech language therapist and is extremely passionate about speech/language and education for children with Down syndrome.

In 2018, we ran our first “Better learning Together Conference” in Dunedin where a range of professionals presented at our first one-day conference.

We would like to thank the Auckland Down Syndrome Association for having us at their conference to see how it was run to give us ideas for ours.

Our conference has gone from strength to strength over the last three years with on average 50 teachers, TAs, RTLBs, parents and caregivers attending each year from all over the greater Otago region.

Grace Moreton dressed up for her nana’s 80th.

We have a range of presenters presenting on topics such as numeracy, behaviour, sensory processing, social skills and speech and language.

We are excited with the direction we are heading with the ODSA and the conference. We develop it further each year going off the feedback from the year before.

This year we were extremely fortunate to have Grace Moreton, Katie Beamish and Beau Campbell who are all youths with Down syndrome as keynote speakers at our conference.

It was an immensely proud moment for the parents of the youths but also the ODSA.

We currently hold three to four socials per year concentrating mainly on education.

We hold a social on World Down Syndrome Day, one around Christmas and one or two in between.

We have done a lot of fun things over the last 10 years, such as the Taieri Gorge train trip, Highlands motorsport park visit, Wānaka visit, Dunedin museum and much more.

It’s been crazy times lately with Covid-19 and our last two social gatherings had to be cancelled.

In my position as ODSA regional representative I have had a few phone calls over lockdown asking for advice around resources for education and what we are allowed to use our respite days for and such things.

Generally, the families I spoke to over lockdown were coping well under the circumstances. I did have a couple of families comment that their children suffered from a bit of anxiety when it came time to go back to school.

In my role as Otago regional rep I have had the opportunity over the last five years to attend the NZDSA Youth Camp in Auckland in November each year.

The first year I attended as a support person and each year since I have been fortunate to take a youth from Otago to the camp. It is a great opportunity for the youth to attend these weekend camps. They are a fun weekend building confidence, new friendships and skills.

I am excited for the future of the Otago Down Syndrome Association and for people with Down syndrome.

We have an awesome website www.odsa.org.nz and our freephone number is 0800 682 463. Please check us out.

Several players with Down syndrome recently featured in New Zealand’s first fully disabled rugby team in Christchurch.

The team is called Polar Bears and is part of High Schools Old Boys’ and an international organisation called Tri Trust Rugby.

The team has 20 players with intellectual and/or physical disabilities and are aged between 12 and 40.

After months of training, the players were buzzing to take the field, along with ‘enablers’ who helped facilitate the game to get everyone involved.

The team’s ultimate goal is to have other teams to play against domestically, and one day internationally.

National Administrator and Finance Officer

New Zealand Down Syndrome Association (NZDSA) works alongside families, whānau and carers to support and empower people with Down syndrome to realise their potential and aspirations through all life stages and within all communities. We work towards the vision that people with Down syndrome are valued and equal members of their community, fulfilling their goals.

Location: not area specific

  • Work from home (some travel involved)
  • National not-for-profit/charity
  • Part-time position (15hrs a week)

Key Responsibilities

This role is responsible for the day-to-day operations of the organisation, which includes:

  • Providing support to families, whānau and carers via phone, email, and direct mail
  • Liaising with, and promoting NZDSA with other agencies
  • General office management
  • Supporting the governance committee, including being Secretary at meetings (quarterly)
  • Managing financial processes
  • Obtaining funding through grants and fundraising initiatives
  • Working on projects, such as workshops and resources

The person

You will share our passion to make a difference in the lives of others, specifically in the lives of people with Down syndrome, their families and whānau.

You will:

  • Be well organised and have excellent attention to detail
  • Have effective oral and written communication skills
  • Have strong interpersonal and relationship building skills
  • Ideally have experience in advocacy and support
  • Have good documentation and analysis skills
  • Be self-motivated, able to work autonomously and flexible with working hours

Skills and experience

We require someone who is computer literate and experienced with the Microsoft Office Suite, specifically Word, Excel and PowerPoint. Knowledge of accounting software (MYOB/Xero) and grant funding experience is an advantage.

Administration Support Officer

 

Location: wider Palmerston North area preferred

  • Work from home (some travel may be involved)
  • National not-for-profit/charity
  • Part-time position (5 hours per week)

Key Responsibilities

This role is responsible for supporting the team in the day-to-day operations of the organisation, which includes:

  • Coordinating travel, accommodation and food for National Committee meetings, Strive meetings, workshops, camps and forums
  • Managing administrative and coordination duties for projects such as workshops, forums and resource development
  • Providing general administrative assistance to the National Executive Officer.
  • Assisting with overflow work from the National Executive Officer and National Administrator and Finance Officer
  • Backup for Payroll Administration
  • Managing incoming/outgoing mail, including emails and National PO Box, in a timely manner
  • Assisting with the website when required
  • Obtaining quotes for resources as required
  • Assisting with tasks related to fundraising strategies as directed by the National Executive Officer or National Administration and Finance Officer
  • Undertaking any other duties, responsibilities and special projects as assigned by the National Executive Officer or National Administration and Finance Officer

The person

You will share our passion to make a difference in the lives of others, specifically in the lives of people with Down syndrome, their families and whānau. You will:

  • Be well organised and have excellent attention to detail
  • Have effective oral and written communication skills
  • Have strong interpersonal and relationship building skills
  • Ideally have experience in advocacy and support
  • Have good documentation and analysis skills
  • Be self-motivated, able to work autonomously and be flexible with working hours

Skills and experience

We require someone who is computer literate and experienced with the Microsoft Office Suite, specifically Word, Excel and PowerPoint.

For more information or to apply, please contact Linda te Kaat, [email protected]  Closing Date: 31st December 2020

 

Families with a child with Down syndrome in many cases face a lifetime of navigating Government departments and agencies to receive the support they need and are entitled to. COEN LAMMERS makes an attempt to point you in the right direction.

Dealing with the Ministry of Health (MoH), Ministry of Social Development (MSD), Ministry of Education (MoE), and their off-shoots can be difficult, frustrating, infuriating or even traumatic.

Having a child with a disability creates additional pressures on families, but those organisations and officials that are supposed to support your family dealing with unorthodox circumstances often only add to the stress levels.

Social media groups are overflowing with endless horrific examples of parents having to fight for what they are entitled to.

Many dread the face-to-face encounters with officials at WINZ to talk about benefits, or MoE staff when fighting for teacher aide funding in Individual Education Plan (IEP) meetings.

Many simply give up and forfeit what they are entitled to and sometimes desperately need.

Trish Grant is an experienced advocate for IHC and has seen every scenario of this state-inflicted trauma first-hand.

“Families are dealing with a complex maze of entitlements,” says Grant, whose organisation is working on a new digital tool to help families navigate the different departments and entitlements.

“At the moment it is impossible for any family to find their way with the information available from the Ministry of Health, MSD or any other Government department.”

Grant says that the system is even difficult for those who are dealing with it on a daily basis.

“One pediatrician once put up a slide at a conference to show the pathways to funding and services, but you’d have to study it for hours to make sense of it. It was the most bizarre slide.”

The IHC advocate also recalls a recent court hearing to secure a Family Carers Benefit, in which the attending magistrate described “the Ministry of Health funding policy as impenetrable”.

So if you think you are struggling to make sense of it all, you are not alone.

“It is still a maze for people to get through, especially for new parents.”

Grant says that most parents find out what they can get through word of mouth.

“That’s why groups like the NZDSA are so important where parents can share information with other parents to find out about financial support or what is on offer as far as support services,” says Grant.

Thankfully, Government agencies are recognising that they need to make accessing supports easier for disabled people and their families, and the primary examples of this is Individualised Funding, Enhanced Individualised Funding and the Enabling Good Lives (EGL) approach.

Individualised Funding, Enhanced Individualised Funding and the Enabling Good Lives approach provide disabled people and their whānau with more choice and control in their lives, offer more flexibility and provide more opportunities to make decisions about how to use the funding to suit the needs of the disabled person and their family.

EGL started in 2011 as a partnership between the disability sector and agencies aimed at long-term transformation of how disabled people and families are supported to live everyday lives.

EGL aim is to create a life plan for its participants and through a navigator applies for the necessary funding through different agencies to create a single funding pool to fulfil the life plan for the person with the disability.

The Ministry of Health allows people to receive Individualised Funding to buy in services they require, but that only covers MoH traditional supports like Personal Care or Household Management, Respite Services and Carer Support.

Enhanced Individualised Funding enables people to pay for a wider range of disability supports that have not traditionally been available and this allows for more flexibility and greater control of how you use your disability support budget.

In 2017, a group of government ministers involved in the disability sector approved a new over-arching programme to Transform the Disability Sector, The new system, Mana Whaikaha, a prototype in Midcentral was co-designed with disabled people and whānau, and others in the disability sector. It is based on the Enabling Good Lives vision and principles.

The interest in the Mana Whaikaha programme has been overwhelming and will provide invaluable information for the Government to implement a nationwide transformation.

Until that new system is established, here are the key funding streams families need to be aware of.

MSD and WINZ benefits

The Ministry of Social Development offers two global benefits and all families are entitled to the Child Disability Allowance.

This allowance is for carers of children with a disability under 16 and is currently $49.25 a week. Officially, this allowance is reviewed every year, but no longer required for children with Down syndrome, so make sure you remind the person who may still want to assess your case, especially when they start asking silly questions like “does your child still have DS?”, which has happened to many families.

IHC advocate Trish Grant says that the number of parents receiving the Child Disability allowance is decreasing.

“Many parents don’t know it even exists so I think there is a big issue there.”

Once your child turns 16, your child is entitled to the Supported Living Allowance, if the child is cared for full-time or would otherwise need residential care (or the equivalent).

Currently the benefit rate is $253 if your child is 16 or 17 and increases to $307 when they turn 18.

Your child can still have a part-time job but once they earn more than $115 a week, the benefit will start getting deducted.

On top of these benefits, you can apply for a Disability Allowance of up to $65 a week, which is for expenses your child may incur due to their disability. This includes medical appointments, travel costs, prescription fees or heating.

You will need to get your GP to confirm these needs and keep your receipts, so this benefit can be a hassle for the relatively small amount and many families choose not to go through the process.

Depending on your living situation, these benefits can also get topped up with an Accommodation Supplement, which ranges from $50 to $120 a week. If the person with the disability owns their own property you can also contact your local council for a Rates Rebate. You can visit the Department of Internal Affairs’ (DIA) website for more details.

Aside from these allowances, MSD can also provide you with a Community Services Card which provides multiple benefits and savings when paying for the bus, pool or other services.

Finally, MSD has the ability to provide one-off payments to provide assistance in particular hardship situations.

Like other children without a disability, children with Down syndrome also qualify for the standard Childcare Subsidy, or OSCAR subsidy for after school and holiday programmes.

It is also important to make sure your family gets their full entitlements under the Working For Families tax scheme.

Ministry of Health benefits

The Ministry of Health also offers a list of support options, but again, they are not easy to access or to understand.

The level of support is determined by an assessment carried out by your local Needs Assessment and Coordination Service (NASC) which is different in each region. You can find your local service under the Respite Care section on the Ministry of Health website.

The MoH offers Carer Support, which enables you to pay a support person to look after your child while you can take time out for yourself.

The Respite Support allowance is also aimed to give parents a breather, but in this case, the allowance pays for your child to go somewhere for an activity or pay a support worker to take your child to an activity.

The level of these benefits are determined in your NASC assessment and depend on your personal situation, like how many other children you care for, how old your children are and other issues that create additional stress in your household.

Sadly, it does not pay to put up a brave face, because if you tell your assessor that everything is peachy, you will receive little support, whilst describing your worst day will get you more support.

A major breakthrough in legislation in 2020 now makes parents or siblings of children with Down syndrome over 18 eligible for Family Funded Care.

This change has been created to facilitate disabled people who want to employ and eligible family/whānau member to provide some or all of their supports.

Currently, the hourly rate for Ministry-funded family carers is $20.50 per hour, which increases to $25.50 an hour if you have been caring for your family member for more than 12 years after they turn 18. Parents and siblings from 16 years onwards are eligible to become the carer.

The Ministry of Health also provides additional benefits, but they are not easy to locate or access.

Most families are eligible to have costs for glasses, fully or partially funded, through the Spectacle Subsidy for children under 15. This covers lenses, frames (and repairs!), examinations and eye patches.

You may also get some funding for dental work and other health needs, but you need to talk to your NASC, your pediatrician or GP to find out exactly what your funding covers.

If you need to travel for treatments regularly or long distances, you also need to ask for the National Travel Assistance Scheme.

The Ministry of Health can also make equipment available through their providers. Accessable and Enable NZ. This could include adjustable beds, shower stools or communications devices.

For those families who need some more assistance getting their children ready for school or when they transition to their own home, the Ministry of Health also offers the Home and Community Services.

For younger children this could consist of someone providing support with meals, showering or getting dressed.

For young adults with Down syndrome who start to live independently, this service supports this transition by helping out with cooking, laundry and cleaning.

Ministry of Education

Those of you who have or had children at school will be well aware of the Ongoing Resourcing Scheme, better known as ORS funding for students with High Needs and Very High Needs.

To access ORS you will need to complete an ORS application. It is important to remember that the application process is emotionally challenging because instead of celebrating and focusing on the achievements and strengths of the student, it requires you to look through a deficits lens to ensure that your child is well resourced.

The ORS application has nine criteria and requires you to identify your child’s need for learning support across five areas: learning, hearing, vision, physical, or language use and social communication.

Parents say it helps if you recognise that by accurately reflecting your child’s learning support needs it will clarify whether they meet the eligibility criteria for ORS. The ORS application will be submitted to a team of verifiers who follow a verification process. At least three verifiers, working from separate locations, independently consider each application. Once the verifiers make a decision, a letter is sent to the parents/whānau and the early intervention centre or school. Resources for students in the Ongoing Resourcing Scheme may include specialists, additional teachers, teacher aides, and a grant for consumables.

If the Local Ministry of Education is the fund holder, then a portion of the funding will be used for the battalion of specialists like speech, occupational and physio therapist and others employed by the Ministry. However, many parents feel that the specialist focus is on writing reports and making recommendations for teachers on how to work with their child rather than providing what they desperately want, which is one-on-one therapy.

Another very important component of ongoing resourcing is to ensure that your child has a current and well-designed Individual Education Plan (IEP) as ongoing resources will be allocated based on individual needs identified through the IEP process. It is essential that you as a parent are involved alongside the educators and professionals with developing the IEP. The NZDSA recognises for families each step of the ORS process is brutal and at times heart-breaking as there is never enough funding available.

The level of ORS funding depends on criteria across the learning support areas and will include things like how independent your child is, whether they have multiple health challenges, whether they are toilet trained and whether they tend to run away.

For this last challenge the Ministry, thankfully, has a separate Property fund they can call on to create a safety fence around the school if required.

Parents tell us that they are frustrated as they feel the ORS funding is not always transparent and not always fully dedicated to the child who receives the funding. Some schools, with genuine motives, pool the ORS funding to provide learning support for as many students as they can, including those who did not receive any funding. So it may pay to ask to get some clarity on how your funding is used.

Many deserving children struggle to get ORS funding so children with Down syndrome are fortunate as they should qualify as high needs students. It is worth noting that the review process for ORS funding can be used when an application for ORS is declined, or when a student receiving ORS funding has a significant change in their circumstances.

Getting your children to and from school can be a logistical or safety challenge so make sure you also look into School Transport Assistance, or you may be eligible for a taxi through the Total Mobility Scheme.

To find out more about ORS go to https://www.education.govt.nz/school/student-support/special-education/ors/

 

Funding through other charities

As the state funding only goes so far, numerous charities and trusts have jumped into the breach to help families at different stages of life.

To get a good idea of what is available in your region, refer to the website www.Firstport.co.nz which lists all the support services and funding agencies available in New Zealand.

One extremely successful charity is the Upsidedowns Education Trust which provides funding for speech therapy for children with Down syndrome, which is a vital asset to every child but often difficult or expensive to access through other channels.

If you child is keen on sport, it is also worthwhile to get in touch with the Halberg Trust who provide equipment and coaching for disabled New Zealanders to get involved in sport.

The Halberg Trust has helped many children fund a trike to enable them to bike with their families or their peers, but you can also try to funding for a trike through the Variety Children’s Charity.

Each region has dozens of philanthropic organisations that are keen to support families for individual needs or group activities, so make sure you have a good look around and see what’s available.

Most importantly, do not be shy or modest to ask and gratefully accept all the help you can get for your family.

 

 

 

 

Jolt Dance in Christchurch has teamed up with Belmont Productions to create the short film “The Call Me Sam” to offer a different perspective on disability, focusing on the individual rather than the diagnosis.  

The short film looks at the life of Sam Stevens, a Jolt dancer with Down syndrome. 

The film grew out of a performance created by Jolt Youth in 2017 called “I am Sam which was created in response to new pre-natal testing for Down Syndrome. In countries like Iceland, this testing has resulted in 100% abortion rates for babies with Down Syndrome. 

“It is wonderful people can have choice, but the problem is the culture which is still really negative about disability,” says Lyn Cotton, the Jolt artistic director. 

“Through Sam’s life we were trying to ask those really big questions like ‘what does it mean to human?” 

The original show “I am Sam used dance, theatre and film, to portray who Sam is _from his birth and early life to the present day. Within that story we see Sam as an individual, not just as a person with Down syndrome. 

The film They Call Me Sam uses dance scenes and rehearsals from that original production, as well as behind the scenes footage and interviews with Sam’s parents, other parents and performers. 

“These dancers come through a society that has very low expectations, so we have to fight that,” says Cotton, who had hoped to first show the film in London this May. 

Jolt Dance had been invited as special guests to the 40th anniversary of Amici Dance, one of the longest running inclusive dance companies, but due to the Covid 19 virus, these celebrations have been delayed. Jolt had fundraised and crowd sourced over $10,000 to take their dancers to England and Cotton says those funds will be held until a new date for the Amici event is announced. 

In New Zealand, the film will be distributed to medical people like radiographers, midwives, nurses and doctors, to educators and trainee teachers to raise expectations, to schools and to the disability sector as a celebration of strength and being different. 

The experiences of our parents and other people within New Zealand to a Down Syndrome diagnosis continues to be negative,” says Cotton. “It focuseon all the problems that may occur. It is a culture of fear instead of expectation. It is also a culture that sees the disability as the most important factor in determining who a person is.  

“We want this film to offer another side to the story. Sam’s life is one of purpose and love,” says Cotton. 

Sam’s father Tom features heavily in the film, but unfortunately passed away recently before he could see the end product.  

In the film he points out that most of us are stressed and can only see the problems ahead of us. “But not to one of these kids. Perhaps we should be more like them,” said Tom. 

The STRIVE self-advocacy team had another busy year and even the  lockdown could not stop their work.

STRIVE is a team of people with Down Syndrome who are a members advisory and leadership group who advise and support the New Zealand Down Syndrome Association board, and are ambassadors and advocates for people with Down Syndrome.

Judging by the STRIVE report to the AGM recently, the STRIVE team has developed its skills and influence significantly during 2019-2020.

The team regularly meets for Funshop, which are workshops with different topics, where guest speakers share their expertise with the young ambassadors.

The past year, the meetings covered Research, Advocacy, Writing Reports, Tips for Public Speaking and developing a Succession Plan.

This final subject is particularly important as some of the STRIVE team have been in their role for several years, and may want a change, while it is also important to get new people involved with fresh energy and ideas.

Once Covid 19 started affecting our day to day lives and New Zealand went into lockdown, the STRIVE team started using Zoom meetings.

The group got together on eight occasions between April and June to share their Covid 19 experiences and continue their other work.

Aside from sharing ideas with each other, the group has been very active in the wider community on behalf of the NZDSA.

Andrew Oswin attended the Disability Consumer Consortium in Wellington, Edward Borkin presented to Auckland Timber Industry as well as the Auckland Success in Schools workshops, Erin Smith was a Support Buddy on the Youth Development Camp and Andrew presented at a meeting of Down Syndrome Australia.

The group worked with the Health And Disability Commission on the script for digital resources to help people with disabilities, in which Duncan Armstrong featured as the lead actor.

On the international stage, STRIVE was part of the a feedback group for the Down Syndrome International research on Covid 19, as well being part of a disabled person-led monitoring programme  in Health and Wellbeing by the Donald Beasley Institute.

The STRIVE members have made huge progress as a group but are also proud of the successes they have enjoyed individually.

“On the 13th October 2020 I received and Achievement Award for the outstanding artistic achievement from Arts Access Aotearoa,” said Duncan Armstrong.

“I am taking up a leadership role in the kapa haka group in Invercargill and will be performing alongside other people with Down syndrome from the Invercargill Down Syndrome Group,” said Alexandra Hewitt.

Edward Borkin said will be going flatting which is a goal he has had before he even joined STRIVE, while Caroline Quick is a member of the EGL regional leadership group in Christchurch as one of three disabled representatives.

Caroline is also a member of the Disability Advisory Group for the Christchurch City Council, for which she is paid  a meeting fee.

In the far north,  Erin Smith is a youth leader in the Great Mates Social group.

“I am still a member of the Northlands DSA committee and I continue to enjoy my dance classes.  I have done training workshops at work and I am helping with the induction training at work and doing meet and greets,” says Erin.

Andrew Oswin said he really enjoys being a self-advocate and a member of STRIVE.

“I am happy and privileged and to have made a commitment of service to the Down syndrome community and country of New Zealand.”

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

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

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

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

 

The new Living with Down Syndrome publication will destroy myths and help overcome barriers for people with Down syndrome to reach their full potential.

The New Zealand Down Syndrome Association (NZDSA) this week published the enhanced 2020 edition of the resource to coincide with World Down Syndrome Month and regards the booklet as a must-have tool for any family or professional interacting with people with Down syndrome.

“Living with Down Syndrome was redesigned as an educational resource with the most current information about Down syndrome from around the world to create greater awareness of the abilities of people with Down syndrome,” says Zandra Vaccarino, National Executive Officer of the NZDSA.

Vaccarino says that the NZDSA had been using an older version of the resource for the past few years, but new research, increased knowledge and different attitudes to the abilities of people with Down syndrome required a complete overhaul of the publication for 2020.

“Our staff and our volunteers have been working on this booklet for months, tapping into the latest research from our global networks, as well as 40 years of parent experiences since the NZDSA was created.”

Aside from the wealth of helpful information for families to deal with different phases of life, Living with Down syndrome is also aimed at the wider community to address preconceived ideas.

“An important aspect of this resource is to address the myths and truths about Down syndrome, so that we can overcome unnecessary barriers which exclude people with Down syndrome to fully participate  in the community,” says Vaccarino.  She added that medical and educational professionals, support workers, employers or anyone else interacting with people with Down syndrome will find that this resource will provide guidelines on how to have empowering engagements with people with Down syndrome.

“This resource was redesigned as an awareness tool to inform and empower the wider community to work alongside the NZDSA to realise our vision that people with Down syndrome are valued and equal members of their community, fulfilling their goals.”

Vaccarino says that ignorance and lack of knowledge often stopped people with Down syndrome to be given opportunities to reach their potential.

“Our people have the same dreams and ambitions as everyone else, to go to school, get a job, go flatting and to have relationships.

“Sometimes they might just need a bit of help to get started, until people realise they can be a great asset in any community, school, club or workplace,” says Vaccarino, who adds that the new publication is also more representative of our diverse membership in Aotearoa.

With increased focus on antenatal testing for Down syndrome, the new version of Living with Down Syndrome includes a large section about the subject to help expecting parents and medical professionals navigate this complex issue.

“We get a lot of questions on this subject so this addresses frequent requests for information regarding antenatal screening.”

Living with Down Syndrome can be downloaded for free once you register your details on https://nzdsa.org.nz/members/resources/