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NDIS Tips: How persisting and standing up for herself got Suzanne the support she needs

NDIS Tip: Suzanne shares experience and advice since joining the NDIS

“I may not have everything I wanted, but overall I’m happy with my final plan.”

Despite the criticism it attracts, the NDIS’s (National Disability Insurance Scheme’s), intention of giving people with disability access to more support than ever before, has been felt by many.

Take one of our users, Suzanne, whose support prior to the NDIS consisted of a support worker once a week, and a cleaner once a fortnight. She describes life before the NDIS as quieter and more isolating.

Suzanne didn’t get everything she wanted in her NDIS plan, but she’s happy. She now has a great range of support helping her live her best life, such as:

  • Community access

  • Cleaning

  • Meal preparation

  • Public transport training

  • Group activities

  • Hearing impaired counselling

  • Auslan lessons

  • Assistive technology

  • Occupational therapist

  • Psychologist

But getting the services and supports she needed was no walk in the park. We caught up with her to get some insights and tips from her NDIS journey, in the hope of helping others in the same situation.

Q. When you were first introduced to the NDIS, how did you find out what you needed to know, to apply for the scheme?

A. "When I first heard the NDIS was coming many years ago I followed it with interest, by:

  • Joining Facebook groups and pages, and

  • Reading about how other NDIS participants achieved the best possible outcome for themselves"

“I was virtually pre-planning for a year and six months prior to submitting my application. I started consolidating all my reports, forms and letters for the NDIS after attending many specialists’ appointments.”

Suzanne explained that she was having several specialist appointments a week for a long time, and had mixed results. “I was frustrated some specialists had no idea of the NDIS coming. I had to advocate and educate them."

“Some specialists dragged out appointments without producing (the report I needed from them), and (then) asked for more appointments when (my) funds were depleted."

“Some specialists implied I was overly worried and taking it too seriously in applying to NDIS.”

On top of that, Susanne found that extra appointments were also needed to edit the documents because they weren’t suitable, or they omitted information.

Suzanne’s experience preparing for the NDIS was “very time consuming”. But her persistence paid off. And this is something she encourages others to be too.

“Once you submit your application, don’t let too much time go by before enquiring about how your application is going.”

Q. How did you come across First2Care?

A. “I met Andrew Wallace (CEO of First2Care) at Queenslanders Disability Network support group long before I became a NDIS participant. I was looking for a plan manager."

“During the meeting Andrew answered the group’s questions. I was impressed and knew if I got funding, First2Care would be my plan manager."

“I used the free online platform from First2Care, which I found superior to other pre-planning booklets/PDF’s because I looked at all the ones available, and was able to compare how easy they were to use and understand. If they weren’t easy to edit, I discarded them.”

Q. How did you communicate with the NDIS? Did you find that difficult?

A. “I have not found my planner that difficult. I emailed her during the time she was building my plan. No one advised me to email her so instead I just decided to, because I felt open communication was better than none."

“It paid off. We were communicating well. I may not have got everything I wanted but overall, I’m happy with my final plan."

“The NDIA (National Disability Insurance Agency) call centre has always been helpful (some calls not so) when I’ve asked them questions, too.”

Q. Have there been times where you were disappointed in the NDIS or the support you received?

A. “I was disappointed they declined funding for a Hearing Dog, citing the dog is no better than a pet dog. That’s an insult to the training organisation, Lions Hearing Dogs. These dogs are specialised. I am profoundly deaf.”

Q. What did you do when this happened?

A. “At first I was in email communication with my advocate, the planner and an Assistance Animal Occupational Therapist (OT) in an attempt to see if I could appeal."

“When I learnt that two advocacy organisations were full to capacity (and that they’re the only ones in Brisbane), I knew I couldn’t appeal alone."

“So, I had to make a decision – either go ahead by myself or let it go."

“The Assistant Animal OT’s report wasn’t suitable and Lions Hearing Dogs ended up talking to the OT to educate her. I decided it wasn’t worth the stress to pursue appealing."

“The NDIA is hit and miss with what they will fund. Some people get the training of an Assistant Animal funded, and some don’t.”

NDIS TIP: Appealing an NDIA decision can be daunting. Find out what you need to know about the review or appeals process so that you have the best chance of getting a successful outcome.

Q. How important do you think it is to stand up for yourself (or your loved one if you’re their carer)?

A. “Very important. I’ve been advocating all my life. Over the years I’ve become better at advocating because I’ve been doing it for so long.”

Q. Do you think standing up for yourself is hard?

A. “Yes, it is, because it’s so repetitive. I don’t think a month goes by without some discrimination or misunderstandings from others about my disabilities."

“Red tape is a pain. I find persevering and then being rewarded with a win satisfying. Stress is not good for us but I cannot stand injustice, so I usually persevere despite the cost to my health. It’s draining. I can get frustrated, angry or teary depending on what it is, but I also grow in strength."

“Sometimes I choose what to fight and what to let go. I have done some serious advocating in my life. I know which government organisations are worse than others and vowed I’d never attempt to advocate against them again because they cover themselves and lie so that it was no point fighting them. Some are too big and powerful.”

Q. What advice would you give to someone else who is planning or self-managing their NDIS plan?

A. “Don’t be idle and expect the NDIS to happen for you – it won’t. Be proactive in your journey if you’re able to.”

Suzanne believes it was her perseverance that got her what she wanted out of her NDIS plan. Her NDIS planning tips are to:

  • Join groups that are reliable, trustworthy and worth staying in

  • Read all the information available to you – good and bad

  • Things like service providers will change over time, so learn to be adaptable and go with the flow

  • If you haven’t already, up-skill yourself on computers; printers and scanners, email, Microsoft Word and social media

  • Become familiar with the NDIS website and their guidelines

  • Connect with people who have similar disabilities to you

  • Keep track of your budget (First2Care’s tool can help you there!)

  • Don’t be afraid to adjust your services and supports if they’re not working for you anymore

  • Seek help from others in the industry, such as your Local Area Coordinator (LAC) or an advocate or plan manager and don’t go through your NDIS journey alone

Q. What tools, apps or resources can you share to help people?

A. “The First2Care app is excellent. I use the NDIS price guide for my state from the NDIS website."

“If you get a plan, become familiar with understanding it – ask questions in whatever manner you need to. Attend forums. Be proactive."

“Don’t expect someone to activate your services. Instead, start emailing or phoning service providers to find the right fit for your needs (or do that before you get your plan like I did).

“What is right for you may not be right for someone else. We’re all unique. I’ve joined a few services that generate regular updates via emails about what’s happening or what they offer. There’s so many of them I don’t know them all off the top of my head."

“Eventually you’ll work out which is of value to keep and which ones to unsubscribe. Facebook is a great tool to use. You can be as vocal as you like, or you can be quiet and just read what others are posting. But if you’re too quiet you may not have your questions answered, so it pays to ask. The variety of questions and answers not only helps you but helps others who may be learning or wondering, too.”

How First2Care can help get you through the ups and downs of your NDIS journey

Thanks for telling us how you got what you wanted out of the NDIS, Suzanne! Your story is a great example to others not to sit idle and wait for things to happen – persistence will pay off!

As you can see, the NDIS can be a tricky thing to handle, especially when you’re new and haven’t been given much direction.

First2Care’s Plan Management App, and the team of Plan Managers at Support Management Systems (SMS) can take away the stress of juggling all the NDIA balls at once, and help you understand your plan and its budget – just ask us how!

It’s time to build your support network, so you don’t have to do so much self-advocating, like Suzanne had to early on.

Over to you

Did Suzanne answer any questions you had in mind? Have you experienced the NDIS differently? Tell us your planning tips or concerns in the comments below – and if you’re looking for a helping hand, sign up for the free planning template today!

NDIS Tip: Suzanne’s strength is evident in her NDIS story