https://nzdsa.org.nz/wp-content/uploads/2021/06/NZDSA_National_Achievement_Awards-3-scaled.jpg 1707 2560 Coen Lammers https://nzdsa.org.nz/wp-content/uploads/2018/07/NZDSA_logo.png Coen Lammers2021-06-08 18:37:082021-06-08 18:37:44Trailblazer Michael Holdsworth gets Queen’s Birthday honour
The New Zealand Down Syndrome Association is extremely proud of Michael Holdsworth becoming a member of the New Zealand Order of Merit in this week’s Queen’s Birthday Honours.
The New Zealand Down Syndrome Association is extremely proud of Michael Holdsworth becoming a member of the New Zealand Order of Merit in this week’s Queen’s Birthday Honours.
The NZDSA believes Michael is the first person with Down syndrome in New Zealand to receive this kind of honour.
Michael was recognised for his decades of work for Special Olympics and his advocacy work for full inclusion of people with Down syndrome in their community in New Zealand.
NZDSA President Kim Porthouse says that Michael has been a trailblazer for people with Down syndrome, both during his education in mainstream schools and his employment with IHC.
“Michael has been a great role model and has helped to remove a lot of barriers for people with Down syndrome,” says Ms Porthouse,
“Aside from that, he is also an accomplished musician and his piano performances have been a regular feature during the NZDSA National Achievement Awards at Government House,” says Ms Porthouse, adding that Michael himself was a recipient of the National Achievement Award in 2012.
“Every person with Down syndrome and their families in New Zealand will be extremely proud of Michael’s achievements and it is wonderful to see this recognised in the Queen’s Birthday honours.”
Michael represented New Zealand at the World Down Syndrome Conference in Dublin, Ireland, in 2009 to share his story of advocacy and inclusion.
He has been involved with Special Olympics for 32 years, as an athlete, advocate and as a Global Ambassador, and has been working for IHC in the library for almost 27 years, being the helpful voice at the end of line for people looking for resources.
The Special Olympics swimmer and skier says he is very honoured.
“With all the years of Special Olympics it has been the best thing of my sport,” he says.
The NZDSA President says that Michael is yet another example of the amazing things people with Down syndrome can achieve.
“More and more people and organisations are starting to realise what people with Down syndrome are capable off and what a great asset they are to their community.
“Michael has been one of the trailblazers and we are excited to see so many other young people following his footsteps.”
/byhttps://nzdsa.org.nz/wp-content/uploads/2021/05/IMG_3890-scaled.jpg 2560 1920 Coen Lammers https://nzdsa.org.nz/wp-content/uploads/2018/07/NZDSA_logo.png Coen Lammers2021-05-14 15:12:382021-05-14 15:16:01Numicon kits available
https://nzdsa.org.nz/wp-content/uploads/2021/04/IMG_0990-rotated.jpg 640 480 Coen Lammers https://nzdsa.org.nz/wp-content/uploads/2018/07/NZDSA_logo.png Coen Lammers2021-04-26 10:47:062021-04-09 10:49:01Edward enjoying his new flat
My name is Edward Borkin and I have always lived with Mum and Dad, but I was independent when they went away.
I have been working at Pak n Save Botany for the last 19 years as a trolley boy.
I am also a member of STRIVE which consists of members with Down syndrome who help to advocate for people with disabilities. I enjoy being part of it and helping others with disabilities.
Another thing that I am involved with is Special Olympics. I participate in ten-pin bowling, swimming and table tennis.
I have recently moved into a flat with David, he has a disability too. We get on like a house on fire!
We share the chores and help each other. We also share some of the same interests like Coronation Street and music.
I have a support worker and try to be as independent as possible. I do need some help with cooking as it’s not really my forte.
I’m learning to catch the bus to work which will help me to be even more independent.
I’m really enjoying flatting!
https://nzdsa.org.nz/wp-content/uploads/2021/04/Carmel_Sepuloni.jpg 780 780 Coen Lammers https://nzdsa.org.nz/wp-content/uploads/2018/07/NZDSA_logo.png Coen Lammers2021-04-22 15:45:422021-04-22 16:41:23Reforms to the Health System in New Zealand
Message from Hon Carmel Sepuloni MP, Minister for Disability Issues.
This week Health Minister Andrew Little announced reforms to the Health System in New Zealand, in response to the Health and Disability System Review.
Our Health and Disability System has not performed consistently in providing quality health care and equitable health outcomes for the disabled community.
The announcement states that we are undertaking work on system transformation for disability support services (DSS), in partnership with the disabled community and based on the vision and principles of the Enabling Good Lives approach. Decisions on the transformed system and the machinery of government to support it will be taken in September this year.
However, disabled people have a strong interest in ensuring that the broader health system works for them, addresses health inequities and improves outcomes. The disabled community will be an important voice in these reforms, which will help to build a stronger Health System that delivers for all.
I wanted to take the opportunity to provide you with some additional information on our next steps.
If you have any further questions, please don’t hesitate to get in contact via[email protected] and I will ensure your questions are answered.
What’s changing? Why?
The shift from 20 District Health Boards to a single nationwide health system managed by Health NZ will improve the quality and consistency of care for disabled people.
A national coordinated network will also help ensure best practice care is shared amongst all disabled communities, and that care does not vary depending on where you live.
The Disability Strategy will remain a cornerstone of our health system, and direct the Ministry of Health, Māori Health Authority and Health NZ in delivering improved health outcomes for disabled communities.
The Government has yet to decide the future of DSS following feedback from the disabled community on the Health and Disability System Review. The Ministries of Health and Social Development will provide advice on the future of DSS later this year. That advice will follow further work with the disabled community based on the principles of Enabling Good Lives and advice developed as part of the machinery of government review of DSS.
What will it look like in future?
A wider range of primary and community care services will be available across New Zealand, developed to be more inclusive of disabled people.
A stronger consumer voice in the design of locality services and planning will give disabled people opportunities to shape services that better suit their needs and help them stay well in the community. The networking and integration of primary and community services will also make care more coordinated, minimising repetition, and ensuring carers have a better understanding of users’ needs.
Health NZ will create avenues to advocate nationally to ensure best practice and service design reflect the diverse interests and needs of disabled people.
When more specialised care is needed, disabled people will have access to high quality hospital and specialist care regardless of where they live in New Zealand.
Over coming months there will be opportunities to influence the details of how our future health system will work, including how we can ensure that Health NZ acts to continuously improve the quality and consistency of care for disabled people, across our health system.
As noted above, further decisions on the future of DSS will be made by the end of 2021.
Want to know more?
Further information about the work and progress of the health reforms is available on the DPMC website under the work of the Transition Unit: www.dpmc.govt.nz/our-business-units/transition-unit.
Hon Carmel Sepuloni
Email [email protected]
Office of Hon Carmel Sepuloni MP, Minister for Social Development & Employment, Minister for Disability Issues, Minister for ACC and Minister for Arts, Culture and Heritage
https://nzdsa.org.nz/wp-content/uploads/2021/02/In-the-Hoop-–-Lizara-Cuthell-Left-Sian-and-Anne-Thomas-Right-Emmily-OConnor-scaled.jpg 1707 2560 Coen Lammers https://nzdsa.org.nz/wp-content/uploads/2018/07/NZDSA_logo.png Coen Lammers2021-02-24 15:32:032021-02-24 15:32:39PHAB creates unique and uplifting experience
By Rebekah Williamson
PHAB is a little organisation with a big impact.
PHAB primarily provides social groups for people of all abilities, across Auckland. We are always looking for new ways to engage with our community.
We have been doing a Girls Day Out annually, but after talking to many families we came to realise that the day-to-day routines for our mothers and daughters often revolved around care, and we wanted to provide a day that was uniquely about their relationship: bonding, learning and being together.
The recent Mothers and Daughters Day started with a cooked breakfast at the PHAB building, all the families came together and before long we were in taxis and off to our main activity for the day: Aerial circus for the day at the Dust Palace.
We chose the Dust Palace in particular because of the large and varied range of costumes that they had, as we wanted everyone to walk away with photographic memories from the day.
Dust Palace was amazingly professional, and provided just the right amount of support, exceptional safety and empowerment to allow the participants on the day to grow in confidence as they explored the apparatus.
After lunch everyone dressed in costumes and got their time in the limelight for their photoshoots with their photographer Natasha H’ng.
The afternoon was finished off at Kiwi Nails and Spa in Takapuna and cake and drinks.
We were lucky to have support from the Louisa and Patrick Emmett Murphy foundation, who saw the value in providing this special day and supported us to do so.
We are grateful to everyone who made this day happen. We are especially grateful to the Mothers and Daughters who were simply inspirational.
https://nzdsa.org.nz/wp-content/uploads/2020/12/Screen-Shot-2020-12-09-at-3.05.35-PM.png 1516 1048 Coen Lammers https://nzdsa.org.nz/wp-content/uploads/2018/07/NZDSA_logo.png Coen Lammers2020-12-16 10:33:372020-12-16 10:34:48New resource fills void for health professionals
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.
https://nzdsa.org.nz/wp-content/uploads/2020/12/Jessica-Jelley-at-the-top-of-Cardrona-after-a-morning-of-skiing-.jpeg 2048 1536 Coen Lammers https://nzdsa.org.nz/wp-content/uploads/2018/07/NZDSA_logo.png Coen Lammers2020-12-07 14:55:082020-12-15 10:11:26Otago Down Syndrome Association flying high
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.
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.
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.
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.
https://nzdsa.org.nz/wp-content/uploads/2020/12/WINZ-Logo-2.jpg 1775 2150 Coen Lammers https://nzdsa.org.nz/wp-content/uploads/2018/07/NZDSA_logo.png Coen Lammers2020-12-01 12:54:522020-12-19 10:54:27How to navigate the maze of benefits
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.
https://nzdsa.org.nz/wp-content/uploads/2020/11/strive-screen-shot-with-self-advocates-scaled.jpg 1920 2560 Coen Lammers https://nzdsa.org.nz/wp-content/uploads/2018/07/NZDSA_logo.png Coen Lammers2020-11-23 16:13:522020-11-24 16:52:33Busy year for STRIVE self-advocates
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.”