You do not want to miss this.

Make sure you check out the long list of world-leading presenters, who will cover most key topics that may be important to people with Down Syndrome as part of the NZDSA Virtual Down Syndrome Conference.

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The NZDSA this month will celebrate its 40th anniversary by hosting the largest Virtual Down Syndrome Conference ever organised in this country, to coincide with World Down Syndrome Month.

The virtual conference will offer a stunning variety of high-profile Kiwi and international expert speakers who will cover a wide range of topics including education, health, speech, relationships, ageing and legal issues.

The conference will have several presentations focused on health with Andrea Simonlehner from Natural Equilibrium doing two sessions on gut health and fussy eaters, while Geraldine Whatnell will share her expertise on growing old with Down syndrome.

One session that will be exciting to parents as well as younger adults with Down syndrome will be relationship expert Dave Hicks talking about the theory and practicalities of getting into a relationship. Dave is likely to become a familiar face on New Zealand television as he was the expert on the upcoming television series Down With Love.

One of the speakers from the United States will be Kavita Krell from Massachusetts General Hospital who will explain how you can develop an innovative online health plan from anywhere in the world, while her colleague Dr Brian Skotko will do a presentation about and for siblings of people with Down syndrome.

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The conference will also offer sessions wellbeing, speech therapy, advocacy and educations, so there will be there something for all stages of life and every member of our community.

The conference will also include a number of sessions specifically for people with Down syndrome, so for the full list of those events, please click here (all these sessions are marked in orange below).

The NZDSA has hosted many conferences, seminars and workshops during its history, but geographical and financial restraints often restricted the number of people who were able to attend.

All those barriers have now been removed by modern technology and the new digital skills we have learned during lockdown.

With modern video conferencing technology, there is no reason to miss out so keep an eye on our E-new and Facebook page for upcoming details how to register.

To get all this information, make sure we can send you our newsletters, so please register your details on the NZDSA website FOR FREE, at www.nzdsa.org.nz

Some sessions will be recorded as a future resource, but many others will not, so make sure you do not miss out on the webinars you are interested.

The NZDSA is non-for-profit charity that receives no Government funding and fully depends on grants and donations, so when you register or think the webinars are of value to you and your community, please remember to make a donation, so we can continue to offer these services to raise the awareness and knowledge around Down syndrome.

REGISTER HERE

 

THE FULL PROGRAMME OF THE VIRTUAL DOWN SYNDROME CONFERENCE

Tuesday 5th October, 7pm – 8pm

Bridget Snedden, President of Down Syndrome International(DSi)

Theme: Wellbeing and Rights

Title:  Getting to the good life – The importance of having a vision

Audience:  Everyone

 

Wednesday 6th October, 7pm – 8pm

Dr Mark Sinclair, Private Practice

Theme: Wellbeing

Title: Keeping an Emotional Balance (At home with children and teens)

Audience:   Parents, whānau, professionals – all ages

 

Thursday, 7th October, 7pm – 8pm

Trish Grant, Director of Advocacy IHC

Theme: Education and Rights

Title: Are we there yet?

Audience: Parents, whānau, professionals with a focus on school-aged children

 

Saturday, 9th October, 10am – 11am

Sir Robert Martin

Theme: Rights and Wellbeing

Title: From Institution to Knighthood

Audience: Everyone

 

Tuesday, 12th October , 7pm – 8pm

Erika Butters, Director, The Personal Advocacy and Safeguarding Adults Trust

Theme: Rights

Title: Supported Decision Making – a Human Right

Audience: Parents, whānau, professionals with a focus on youth and adults

 

Wednesday, 13th October, 7pm – 8pm

Dr Maree Kirk, Director, STPDS NZ

Theme: Education

Title: Individual Education Plan – The capabilities approach

Audience: Parents, whānau, professionals with a focus on school-aged children

 

Wednesday, 14th October, 12pm-1pm

Andrea Simonlehner, Natural Equilibrium

Theme: Health

Title: Brain and Gut Health for people with Down syndrome

Please note this session will view the recorded session hosted in September (there will be no Q&A)

It will be beneficial to view this for the session with Andrea on the 27th October

Audience: Parents, whānau, professionals – all ages

 

Thursday, 14th October, 7pm – 8pm

Who: Erika Butters, Director, The Personal Advocacy and Safeguarding Adults Trust

Theme: Rights

What: Supported Decision Making – a Human Right. 

Audience: People with Down syndrome

 

Saturday, 16th October, 10am – 11am

Dr Brian Skotko,  Director of the Down Syndrome Program at Massachusetts General Hospital

and Susan Levine, Co-founder and social worker at Family Resource Associates, Inc.

Theme: Siblings 18+

Title: Adult brothers and sisters of siblings with Down syndrome: Exploring past experiences and current roles

Audience: Siblings 18+

 

Tuesday, 19th October,  7pm – 8pm

Fiona Kenworthy, Speech & language therapist

Clinical Director /Small Talk Therapy

Theme: Speech and Language Therapy

Title: Early literacy skills for children with Down syndrome – Families making a difference

Audience: Parents, whānau, professionals with a focus on early literacy skills (not age specific)

Hosted by UpsideDowns Education Trust and the NZDSA

 

Wednesday, 20th October, 7pm – 8pm

Dave Hicks, Academic Programme Manager – Unitec

Theme: Wellbeing

Title: Relationships – Theories and Practicalities

Audience: Parents, whānau, professionals – all ages

 

Thursday,21st October, 12pm -1pm

Gretchen A. Good, PhD, Senior Lecturer in Rehabilitation and Disability Studies, Massey University and Jane Lee, MSW, Tutor in Rehabilitation and Disability Studies, Massey University

Theme: Wellbeing and Rights

Title: Parenting during a pandemic:  Have any lessons been learned?

Audience: Parents, whānau, professionals – all ages

 

Thursday 21st October, 7pm – 8pm

Who: Dr Mark Sinclair, Private Practice

What:  Managing your feelings

Audience: People with Down syndrome

 

Saturday, 23rd October, 10am – 11am

Kavita Krell, Director of Customer Experience for Down Syndrome Clinic to You (DSC2U)

Theme: Health

Title: DSC2U: An online personal care plan for caregivers and primary care physicians

Audience: Parents, whānau, professionals  – all ages

 

Tuesday, 26th October, 7pm – 8pm

Andrea Simonlehner, Natural Equilibrium

Theme: Health

Title: Fussy Eaters

Audience: Parents, whānau, professionals – relevant for all ages

 

Wednesday, 27th October, 7pm – 8pm

Geraldine (Dina) Whatnell, Nurse Practitioner Mental Health and Addictions Service Palmerston North Hospital

Theme: Health

Title: The Golden Years: Ageing and Down Syndrome

Audience: Parents, whānau, professionals – focus on adults who are 25+

 

Thursday, 28th October, 7pm – 8pm

Who: Libby Hunsdale, Michael Holdsworth, Rochelle Waters, Amelia Eades, Luka Willems, Lily Harper, Carlos Biggemann, Bradley Lewis, Jacob Dombroski, Alfie Linn

What: Meet the Stars!

Audience: People with Down syndrome, but others are welcome to join

 

Saturday, 30th October, 10am – 11am

Dr Maree Kirk, Director, STPDS NZ

Theme: Education/Wellbeing

Title: Making visions work – Social skill development for identity across the lifespan

Audience: Parents, whānau, professionals with a focus on school-aged children

 

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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!

How to make Enabling Good Lives Vision a reality 

James and Mantar

James Young moved in his own home in 2017 after years of planning by his parents to get the right flatmates, funding and support. KAYE YOUNG hopes this story will help other families on a similar journey.

In 2013, our son James was 18 years old and had three more years of school. Already I was starting to worry about what on Earth he was going to do when he left school.
The same year Enabling Good Lives was launched in Christchurch and I was excited to learn what they had to offer, but sadly only students in their last year of high school were eligible.

The following year, our youngest son started University and left home, and without other support, my husband and I found it a struggle to have a life of our own.
James has Down syndrome, autism and Coeliac disease and on top of that is nonverbal. This meant he could not be left on his own and any breaks for us had to be planned in advance.

We relied on a wonderful carer living in Greenpark, but looking for carers who could help James on weekday evenings became problematic as our ties with high school got smaller.
Enabling Good Lives was a godsend. I attended workshops on “Building a Great Vision”, “Networking and Circles of Support”, and encouraged them to run workshops on housing.
We felt that flatting and moving young adults with a disability into their own living arrangements was an important part of having a good life.

When I finished my job at Parent to Parent in May 2014, my focus turned to the plans for James after school.

Enabling Good Lives responded by running four workshops for families who were looking to establish a new home for the disabled family member. They covered: Creating our visions, Community Resources (WINZ, CCC Social Housing Unit, CCS Disability Action, NZCare, Lifemark Design), Legal stuff and Where To From Here.

The workshops highlighted that there was little housing for young people with a disability in the community and the Christchurch City Council had no social housing as the priority was homeless families after the earthquake.

It crystallised our thoughts that we needed to organise a house of our own in a location of our choice with flatmates that James knows, in order for him to move out from home.
Parent & Family Resource Centre in Auckland had put out a booklet Four Go Flatting and it is an invaluable resource. This booklet guided and formulated our thoughts, but we quickly decided that we did not want to be an employer of staff.

We wanted a model that was sustainable and did not rely on us always being there and our thoughts were that a residential provider would provide the staff in our son’s home.

We did not know where to start, so we visited residential providers in Christchurch. Despite high quality of care and homes, we felt that six or more residents in a house and the average age of residents over 40 was too big a gap for our son.

Despite our vision of a residential provider providing staff to a house we had purchased, that was still Plan B and the much easier option was to get James into an existing residential provider.

In September 2015, our NASC assessment was done and we were surprised to be turned down for a residential subsidy given that James is far more delayed than others we saw in residential homes.

Surprisingly, the Notification of Service Coordination letter left out the two most important goals:

“I would like to live independently of my family and I will need 24-hour support when I move to a new home.”

“I need a transition from school to vocational activities or activities that I enjoy at the end of 2016.”

After writing to the NASC, the goals were included but the funding remained unchanged. This just made us more determined to purchase a house, find the flatmates for James and go back to the NASC with another 3 families with a comprehensive plan.

Now it was 2016 and James’s last year at school, which made me more anxious.

In February, we went to a meeting with EGL to find out who was available to be our EGL Navigator.

In March, we met with staff from Hawksbury Community Living Trust who were able to address some of our concerns and provided us with information for our original plans to build a purpose-built house. “Four Go Flatting” suggested that the home is no more than five minutes from the family home, so we started looking at existing houses as well as sections in Halswell.

Hawksbury CLT staff met James a couple of times and a meeting around Flexible Funding that same month gave us encouragement on how to move forward. The Flexible Disability Support funding would enable families to enter into an agreement with a residential provider who would hold the funding and provide staff in a family home to look after a person with a disability.

In April 2016, we called a meeting with parents from James’s high school class, who had sons who could be prospective flatmates for James. We explained our vision and offered to prepare a plan for our four young men in their own house.

A week later we had one family on board, one that decided not to continue and one that would only commit if the best friend of their son was able to be part of the group. The best friend was in the same class as James and his family gave us an immediate yes.

We felt very happy with these flatmates for James, were confident they would get along, but did not know whether the four would bring in enough funding if it was pooled.

All four young men are mobile and we knew that we did not need a purpose-built house. We looked again for four-bedroom houses with two living rooms plus another room that could be used as a bedroom for staff.

Almost immediately a house popped up near the Halswell Domain which looked promising. Not only were the bedrooms spacious, the study was big enough for a staff bedroom, the house had 2 living rooms, was made of permanent materials, had a separate laundry, double garage, was fully fenced and had an easy-care garden. It was just what we wanted.

On May 20, 2016, we were the proud owners of this house. We set up a trust to purchase the house and we naively thought that James could be a settlor of the trust and that we could use James’s savings. However, because we are joint Welfare Guardians for James he is not a legal entity and we were not able to settle James’s money into the trust nor was he able to own a house because he is not a legal entity.

The families met with the CEO of Hawksbury CLT and worked out the number of hours the young men would need support and used that to calculate the budget. This information formed part of a document Roger and I put together called an Independent Living Plan. This document included one page on each young man, their vision and background, information on the house, type and hours of support required, budgets and contact details.

We took this plan to a meeting with representatives of NASC, EGL and Hawksbury Trust to demonstrate that four families were all serious and intended for their sons to go flatting together in 2017 in the house we had purchased.

NASC than assessed each of the young men to determine their Enabling Good Lives Personal Budget. With EGL, James’s Flexible Disability Support funding from the Ministries of Education, Health and Social Development would be brought together into a personal budget. Instead of Carer Support days or MSD funding, James would have one pot of money which simplified matters enormously.

In the meantime, the families worked with Hawksbury CLT to determine that the budget we had calculated fitted the vision each family had for their son. Once all families had heard back from the NASC, the four families met and added up the four personal budgets. It was an enormous relief to find that figure was enough to cover our budget based on having one staff person in the house to support the young men at all times.

The families agreed on a moving date of April 3, 2017 and NASC agreed to align the annual review dates of the personal budgets to April 1 to make budgeting easier.

Roger and I had created a draft Memorandum of Understanding, which is not legally binding but which captured in writing all the important points the families needed to agree on. The MOU covered the background and purpose of the house, agreements on how the house would be run, liabilities, how we would settle disputes, and how the arrangements could be reviewed. In November, 2017, the MOU was signed by all parties.

Hawksbury CLT had been excellent to deal with and had spent a considerable amount of time and effort getting to know us and helping us. The consensus of all four families was to sign an agreement with Hawksbury as our service provider. We asked Hawksbury CLT to draw up an agreement with the relationship, roles and responsibilities of each party, and each family signed a separate agreement with the provider.

In Christchurch, there are 12 organisations which are able to provide Flexible Disability Support and can be found on the Enabling Good Lives website:

http://www.enablinggoodlives.co.nz/current-demonstrations/enabling-good-lives-christchurch/christchurch-resources/purchasing-options-for-enabling-good-lives-participants/

These providers are able to assist Enabling Good Lives participants to manage their personal budgets and support them to purchase the supports, services and things that will assist them to lead a good life.

The personal budgets are allocated to Hawksbury CLT so the money does not go through their personal bank accounts. Hawksbury CLT invoices the Ministry of Health every month for the costs of the staff they provide to the house. The funding is valid for a year and each year before the funding review date of April 1 each family is contacted by the NASC to see if there have been any changes in need before reallocating their EGLPB for another year.

After our 2016 Christmas break, we had 3 more jobs to do: create a transition plan, furnish the house and talk to WINZ.

The transition plan was the most important. The other three young men were going to Ara Institute of Canterbury, which offers a course specifically for students with intellectual or learning disabilities from Monday through Thursday each week.

For James, I put together a programme which involved activities in the community, housework, socialising and his volunteer work at Wicketts Dog Groomers.

Roger and I purchased many of the big household items like lounge suites on Trademe. We also hit all the Briscoes sales so it did not take long to purchase all the kitchenware we needed. James’s flatmates took care of the furniture and bedding for their own rooms.

In February 2017, we asked Enabling Good Lives if they could arrange one WINZ case manager for all four families. We met with her as a group and individually to explain the situation.

The case manager was given the signed copy of the tenancy agreement which I had created using the website www.tenancy.govt.nz which was crucial for obtaining the Accommodation Supplement.

Each family had to apply for the Accommodation Supplement which is paid directly to the landlord by WINZ and does not go through the young men’s individual bank accounts.
Lastly, towards the end of March we set up a weekly payment from our son’s bank account to go to Hawksbury CLT to cover the food, petrol, phone and power. The weekly Supported Living Payment from WINZ covered these costs.

One month from the move, three of the young men were 21 and one was 22 and all knew each other well from high school. Our son James did not understand what was happening but the other three were looking forward to the move.

The months that James had at home with us in February and March were an indicator of how isolating it was going to be for James if he stayed at home. I had to work hard arranging for him to see friends or have a life even remotely like ours. It was good for us to have James’s move into his new home to look forward to.

We put together a house manual with instructions to staff and I put together a file of James’s favourite recipes and instructions about gluten free food.

We also drew up a register of all the chattels that had gone into the house. Lastly Roger and I used a Communication Passport to tell staff everything they needed to know about James; communication, health, his weekly programme, things he could do, things he could not do, safety concerns and so on.

The four flatmates

The big day arrived on April 3rd, 2017 and James formally moved in on the Monday morning. He had been at the house for some of the weekend and week before as Roger slept over with James in his new bedroom.

The staff person who had supported James at home in the interim months was the first staff person to work in the house. He was there to greet James and his flatmates as everyone moved in over the next couple of days.

Gradually James met the other male staff when they were rostered on to do either the 7am to 3pm shift or the 3pm to 11pm shift. Those who did the last shift also slept over.

There are 3 permanent staff and up to 3 “Permanent Relief Team” staff who can work in our house as well as other Hawksbury CLT houses.

We handed over our old Honda Odyssey for the staff to transport five big men around the city.

As the months passed the young men settled into a routine. They are very happy in their new home but regularly go to their family home at weekends for the day or whole weekend.

Quickly they decided it was more fun staying in their own home, than going back to the family home, so most of them only go home for one day each weekend.

The young men do things together but during the week they tend to head in different directions particularly once they finished at Ara Institute of Canterbury.

Initially the parents, young men and staff had monthly family meetings but this has now settled down to once a quarter. In the meetings we air any concerns, talk about finances and have a say about what our sons could be doing and set dates for events. The staff have had to get used to having two bosses; parents and management of Hawksbury CLT.

We organised a house warming party for neighbours, friends, classmates and extended family to come and have a look, followed by a Christmas Party for the families, young men and staff.

Our young men are all friends and want to flat together hence there are no behavioural issues between them. The flatmates have “lifted their game” and all understand that they have to cook with support once a week and have chores to do.

Hawksbury CLT every month sends each parent a “Flexible Disability Support Monthly Purchase Unit Summary” which shows the opening balance of the number of units in their EGLPB (each unit is worth $10), the number of units spent on staff costs and the closing balance at the end of the month.

Each month the parents can see on the “Personal Finance” report what their son’s quarter share of the grocery bill and power bill has been and whether it needs a top up. Finally we get the “House Account” which summarises the total the grocery bill, petrol bill, power and phone bill for the month as a check on how the staff spend the money of the flatmates on day to day expenses. Parents still need to top up for clothes and incidentals as none of the young men at present have regular part time work.

We now also get a feedback report from staff on what the young men are doing, which is reassuring for parents. We have not had any major issues, but small things have arisen, like how we will be able to fund a replacement for the old car. It is possible we may lose some staff, but until now there has been no staff turnover. Good communication and good documentation is the key and where this is missing parents and staff are working through issues that arise.

It is now two years since the young men moved in and they are planning a BBQ with friends from school and later this year the young men want to go to Queenstown for a few days.
The most important thing is that the young men are well supported, making their own choices, are contributing members of the community through the volunteer work they do and are happy.

Roger and I have fulfilled our vision of our son living independently of us in a housing model that is sustainable and does not rely on us always being there.
By purchasing a house in a location of our choice with flatmates of our son’s choice supported by a Flexible Disability Support Provider we have been able to fulfil the Enabling Good Lives Vision.

It might be worth checking those out. http://www.enablinggoodlives.co.nz/about-egl/egl-approach/vision/

Mini golf in Hanmer