How to make Enabling Good Lives Vision a reality
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:
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 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/