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Reach Out, April 2016, isue 103

The latest news from Tuberous Sclerosis Australia and up to date information on tuberous sclerosis information, support and research.

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Personal Stories<br />

Insurance Adventure<br />

Things to think about when choosing service providers<br />

• Think carefully about what it is you want for your child.<br />

Don’t be afraid to dream big – where do you want your child<br />

to be in 5 years’ time? In a job? Then look at accessing job<br />

training services. Living out of home? Residential services.<br />

You’d be surprised how many programs and services NDIS<br />

will cover.<br />

• The NDIS is person-centred. The aim is to put in place the<br />

supports needed to help your child be the person they are<br />

or want to become. You may already be accessing some<br />

disability services – are these of maximum benefit to your<br />

child? The NDIS will fund support that allows your child<br />

to ‘achieve the same outcomes as their previous support,’<br />

although it may not be with the same provider currently<br />

used. This is a great opportunity to think about your child’s<br />

personhood, their interests and likes, their strengths and<br />

weaknesses, their personality. At planning stage, a lot of<br />

questions will be directed at getting to the core of who your<br />

child is, family and friends may be asked to participate. It’s<br />

worth having a round table with all the family to discuss<br />

goals, interests and aspirations. The role of service providers<br />

should be to facilitate growth, to create opportunities and<br />

experiences to develop their client.<br />

• What do you currently do for your child? Note down all the<br />

things you currently do for him or her every day. This is<br />

the level of support they will need in their funding package<br />

for a service provider to do it for them. I know it’s tempting<br />

to ‘talk your child up’ and be proud that they can tie their<br />

shoes, or do up the zip on their jacket. But take into account<br />

the bad days, when they won’t cooperate, won’t wear their<br />

jacket, or take their shoes off and throw them. Use this as<br />

your baseline for the level of support they’ll need. These bad<br />

days may only happened once or twice a month, but you’ll<br />

have peace of mind knowing the funding is there should it be<br />

needed. If your child currently receives mobility allowance<br />

from Centrelink, factor in any transport needs, as they will<br />

cease to receive mobility allowance under NDIS.<br />

• The NDIS website has a list of registered providers in your<br />

area. It also has a list of prices, but this is not important at<br />

the initial stage. Choose the services you believe your child<br />

needs and be prepared with detailed reasons why they need<br />

them. Some services will require backup documents from<br />

therapists involved with your child. For example, in order<br />

to receive funding for Liam’s exercise physiology program<br />

at the pool we needed a letter of endorsement from his occupational<br />

therapist.<br />

• As the NDIS aims to support the whole person, there are<br />

a large range of wellbeing options, ranging from physiotherapy<br />

to nutrition, exercise programs and swimming. Be<br />

well informed at the start and if you’re not sure if a service is<br />

funded, phone or email and ask!<br />

Time to chat: Once you’ve made some decisions around which<br />

services are needed, it’s time to call or meet with them. First visit<br />

the Department of Social Services website (www.dss.gov.au) and<br />

read the National Standards for Disability Services. These will<br />

give you a good idea of what a service provider should be, well…<br />

providing.<br />

Questions to ask providers<br />

• What is their vision for an individual? Do they have a mission<br />

statement? Ask for a copy. Ask them how they implement<br />

their vision day to day.<br />

• Ask how they see their role as a service provider. Do they really<br />

understand ‘person-centred’ or are they more focussed on<br />

a rigid outline of what they do as an organisation. They may<br />

not be prepared to be flexible, to be committed to your child’s<br />

growth journey, they may miss opportunities to develop and<br />

stretch her or him. Remember, the switch to a person-centred<br />

orientation is new to service providers as well.<br />

• Are the staff trained in alternative forms of communication<br />

(if your child has challenges in this area). If so, ask them to<br />

demonstrate for you.<br />

• All the services I have ever dealt with welcome visits. Make<br />

sure you also pop in unannounced from time to time. Observe<br />

the dynamic, watch how staff interact with individuals<br />

there. Check the surroundings. Come back at different times<br />

of day – the environment might be very different at 3pm, say,<br />

when perhaps groups of people are coming back from outings<br />

creating a noise level that may be too much for your child.<br />

Overwhelmed? Get yourself a Coordinator of Supports. Liam<br />

has funding for around 6 hours a week for this service, and we<br />

went with an organisation who had been advocating for us for<br />

years and we had a good relationship with. Our Coordinator of<br />

Supports is an absolute godsend. She’s up<br />

to date with who is offering what, can<br />

arrange everything easily, even down<br />

to simply ordering continence aids. She<br />

can short-cut the process of deciding<br />

on appropriate providers because she<br />

knows what they all offer, where their<br />

facilities are, if they are near any shops<br />

that sell Coke! She also keeps me on<br />

track with regular meetings to discuss<br />

long and short term goals, where<br />

we’re going next with Liam and how<br />

we’re going to get there. We had<br />

been trying to navigate the system<br />

ourselves prior to 2015 and one of<br />

the results was that we had funding<br />

lines in Liam’s package we didn’t<br />

even realise were there. Which<br />

brings me to my next point.<br />

15

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