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MY LIFE, MY WAYIndividualised Funding

Manawanui InCharge would like to thank

Alex Snedden, Sarah Morrell, Amy Hogan, and their families for the use of these stories.

Copyright © Manawanui InCharge Ltd March 2016

YOUR CHOICEYOUR CONTROL

Being authentic Being thought leaders Going beyond excellence Being courageous Rangatiratanga (self determination)

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Individualised Funding (I F) supports people with disabilities and their families to have more choice, control and flexibility over the disability services they receive.

I F provides funding so that disabled people can employ their own staff to support them around areas of personal care and household management.

I F is based on a philosophy of person-centred control, in which people should be empowered to live ordinary lives and have control and choice over that life.

Individualised Funding

Sarah Morrell

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Amy Hogan

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Contents

Alex Snedden

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Sarah Morrell

Like every other 20-year old, Sarah Morell enjoys

her independence and wants to be the one that calls all the shots. That’s why Individualised Funding is a set-up that works for her.

Sarah manages her own budget, employs support staff and looks after the paperwork. It’s good practice for the young woman, who studies business at the Universal College of Learning (UCOL) in Whanganui and hopes to pursue it as a career.

“I’m looking at Individualised Funding as a bit of practice for when I become a manager and I have to look after employees. It’s been really helpful with my degree. I told my tutor all about Individualised Funding and she’s really excited for me.

Her own boss

She even lets me bring my paperwork to class and helps me out if I need it.”

“I’m really enjoying business, it’s worked out well for me. UCOL is really easy to get to and I know lots of people that go there. Uni keeps me busy and it’s nice being on the river. “

“I like the idea of being my own boss, instead of working for one. My dream would be to start my own small business one day, like a stationery shop.”

For Sarah, stationery is more than just about profit margins. She loves stationery, scrapbooking

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and anything to do with organisation.

“I love paper crafts. I’ve got this organised system in my desk and everything’s got its place. I also love making quirky things now and then when I get bored. I went to America a couple of years ago and I’ve done a scrapbook of my time there. It’s got pictures and tickets and whatever you can think of.”

Sarah began using Individualised Funding three years ago in order to help her manage her disability-related supports and become more independent from her parents.

“As I was getting older, I wanted more freedom. I wanted to move out soon. I thought Individualised Funding would be good practice for that.“

“Before I F it was pretty much my parents looking after me. If I wanted to go away with my friends, one of them had to come with us. You know with school 5

“As I was getting older, I wanted more freedom.”

they had to come with me to camp and school trips and stuff.“

“It’s been great not having to rely on my parents so much. I can go away to Wellington and meet my friends and it’s just so much easier. Mum and dad don’t have to worry about me and don’t have to take time off or anything like that.“

“My support staff are all close to my age, so we’ve got lots of things in common. My mum is a registered nurse, so I’m used to top care. Thankfully one of my support workers is a nurse too, so she knows how to look after me really well. It’s been great!”

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Alex SneddenLiving life to the full

Alex Snedden has a very rich life. He pursues his hobbies and passions

with vigour, balances two part-time jobs, attends church and always finds time to catch up with mates over a beer and barbeque.

Twenty-eight year old Alex has Down Syndrome, but it is just a small part of who he is, says his mum Bridget.

“Alex has a very full life. He is very involved in leadership and community organisations. He is an active member of STRIVE and the Northern region Vice President of People First. He is regularly asked to present at events. Alex also works, goes to the gym, attends church, and until recently volunteered at the local food bank. He has friends who have a disability and those that don’t. It’s a real mix.”

The young man is very independent and has been flatting for more than three years. Alex shares the flat with three people who don’t have a disability, two men and a woman.

“Sometimes one of the flatmates cooks and we eat together. It’s really nice,” says Alex.

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Just like his flatmates, Alex has a busy schedule, with work three times a week, catching up with friends, weekly karate practices and attending the gym.

He uses Individualised Funding to meet his support needs, although the way this works for Alex is very different from a traditional support set-up.

“I didn’t want a caregiver in my life, I wanted a personal assistant,” says Alex. “I really like it when the cleaner comes too.”

Alex employs two personal assistants who do things like organising his food for the week, accompanying Alex to doctor’s appointments and checking in to make sure that his life is running smoothly.

There are other creative ways in which Alex’s family uses Individualised Funding. For example, he has a season ticket to the Breakers and the Rugby. Alex’s family uses Individualised Funding

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to purchase tickets for a friend to go and support him at the game.

When Alex decided to go to Italy, his parents also used I F to fund a travel partner for him. “Alex wanted to meet the Pope,” says Bridget.

With the confidence he gained on his first overseas trip, not long after Alex was able to travel to New York on his own. “I was very nervous,” admits his mum Bridget, “but sometimes as a parent you have to learn to let go a little.”

For Alex, the sense of freedom he gets from being in charge of his own life is the most important thing.

“It’s not about independent living or about any of those things. It’s about freedom. That’s the best thing about my life.”

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Alex shares the flat with three people who don’t have a

disability.

Amy HoganA force of nature

Upon meeting Amy Hogan, one thing

becomes apparent very quickly, she is a force of nature to be reckoned with.

In her 29 years, Amy has held more roles than some do in a lifetime, including conducting seminars, advising government policy, volunteering for the Mobility Assistance Dogs Trust, public speaking, guest lecturing and advising on disability in prisons. Currently, Amy works as a researcher and a writer for the Cerebral Palsy Society of New Zealand and is completing her Postgraduate Diploma in Psychology. Just rattling off the list of Amy’s accomplishments is enough to leave one breathless.

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“The best thing about my life

now is how much control I have.”

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Why does she do it?

“I enjoy campaigning and I enjoy politics. I’d like to think that human beings can change things.”

Her most recent piece of research involves looking into the lived experiences of adults with disability; a topic Amy has first-hand insight into.

A vibrant, stylish young woman, Amy has cerebral palsy. She receives Individualised Funding through Manawanui to support her in managing her disability support services in a way that suits her.

Amy credits this unique funding system for enabling her to keep up with her busy schedule.

“I have a primary caregiver that comes over on weekdays and helps me get dressed, prepares my meals for the day and helps me with all kinds of essential basics.“

“Even when I have three or four meetings in a day, I 13

know I can have my lunch prepared and I can have all my notes prepared. It takes away a lot of the stress that comes with being disabled,” she adds.

Amy says that one of the greatest benefits of Individualised Funding is the autonomy it gives her.

“The best thing about my life now is how much control I have. I have a great foundation for independence now. I feel like I can expand my life in ways I would’ve never thought I’d be able to, like travelling, going to conferences, etc.“

“I feel like I’m far more independent than I have ever been and that’s not because I’m physically independent, I’m not doing things on my own, but I’m able to present myself to the world as very independent because I’ve got support services around me for all those things I have historically found challenging,” she adds. 14

“I can get dressed on my own, but it would take me three hours a day. I want to spend those three hours doing something that’s more meaningful to me.”

In her spare time Amy enjoys reading and going to the movies and “hanging out with my menagerie of rescue animals.”

Individualised Funding is a form of funding for people needing disability support. Individualised Funding can give a person more choice, control and flexibility as they decide how, when and who provides their support. I F is based on a philosophy of person-centred control, in which people should be empowered to live ordinary lives and have control and choice over that life.

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