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Connect and Grow Magazine May - June 2024 - Edition 9
The month's theme is multiculturalism and fun. While we are covering a story that has a good ending, it was a really stressful time for the family.
We are also releasing our T-shirt range – Uniquely Me, very soon; we have started with the design.
As you may have read already, or you can go back and read, the NDIS feels like a broken system.
This month, we are sharing Miss “A” 's story, as shared with me by her other Angela.
We protect Miss A‘s privacy, so throughout the article, we lovingly and respectfully refer to Angela’s daughter as Miss A.
Miss A is now an incredible 16-year-old with no easy life. Her mother, Angela, shared with me that when Miss A was 6 months old, the doctors did a few tests and found that the Down Syndrome that Miss A had only a 2% Down Syndrome diagnosis.
Angela shared with me how challenging it has been with Miss A, especially as she ages, and her behaviours are sometimes hard for everyone. Miss A’s full diagnosis list is Down syndrome, Autism, Intellectual disability, Non-verbal, ADHD, Behavioural issues and is legally blind.
While Miss A usually has to make herself known to others when she feels unheard or the attention is not on her, she is generally happy. She has siblings, and as Angela shared with me, Miss A is not one for sharing the limelight.
With a big heart and a smile that makes people melt, Miss A requires assistance every day of her life. While there are some things she can do to communicate in her way and make friends, it is not easy for everyone in her life.
As a parent, Angela has shared that she will always worry about Miss A and what will happen to her if anything happens to her and her husband. This is where the NDIS started as a great gift and relief for everyone.
However, the NDIS has its issues. For Miss A, who requires constant support to ensure her safety, the NDIS has let them down.
Miss A has core supports -support worker funding, capacity building, CB daily living for allied health professionals, and a few other things.
Allied Health professionals such as Occupational therapists, Physiotherapists and Exercise Physiologists can help build capacity.
Initially, the early intervention program was a gift to Miss A and Angela, getting the therapists to help her develop as much as possible.
To have Miss A have a way of communicating; however, as she has become older, the funding in the NDIS plan changed significantly.
When dealing with providers who encourage Angela and her husband to have respite, for them to go away for a weekend so that they could have a break and Miss A would be safe, Angela shared that she couldn’t believe how much the respite service cost, even though Miss A’s NDIS plan covers it. To Angela, it was so much money.
As time passed, Angela noticed that many providers constantly wanted to be paid the maximum rate in the NDIS pricing arrangement instead of being flexible and helping Miss A and the family get the most out of the NDIS plan.
Some providers insisted they had to charge the maximum rate, which is not the case. While running a business, a person with an NDIS plan has the funding to last the entire plan; there are no top-ups.
A lack of funding for an NDIS plan stresses everyone, particularly those without the support they need.
When PACE was rolled out things started to change, and Angela noticed that it seems to create more issues and challenges than making life easier.
Late in 2023, Miss A’s plan ran out of funding. They eventually got a plan review meeting date for October and submitted all the reports in plenty of time. These reports, for those who don’t know, are expensive, especially if they are functional assessments completed by the Occupational therapist.
Angela arranged to have everything ready for the meeting and hoped to get some extra funding as Miss A’s needs had changed.
The meeting occurred, and the new plan did not arrive until February 2024. This required many phone calls, and at times, we were told that things could not be found in the new PACE system.
It is stressful enough for Angela, and she is an organised woman who knows exactly what her daughter needs; however, there were times for her when dealing with the NDIS made no sense at all, the constant having to remind people that Miss A cannot speak and that forms for her to speak on behalf of Miss A had already been submitted.
Angela shared with me also that even other governing bodies, such as Medicare, kept asking her to speak to Miss A before they could speak to her to make one minor change, such as an address update. Unfortunately, this is being made worse for families such as Angela’s and Miss A's who have situations when the adult child cannot speak and does not hold a driver's license or passport, which all form part of digital IDs actually to make any changes, for example, updating contact details.
No Funding – No Support
During the time of having no funding in her NDIS plan for several months, including during school holidays, when Miss A really required it, the family had to rally together and even take leave from work to be there to support Miss A.
The stress and worry of not knowing when the new plan would be created was hard on everyone. The uncertainty of not knowing how long it would take for things to improve when the new plan is approved.
Angela had to ask friends and family for as much help as possible, which wasn’t easy. It was a huge change of routine for Miss A, which meant she ended up having more emotional outbursts. The entire situation was not one the family ever wanted to go through again.
New plan – A relief!
Once the new NDIS plan was in place, Angela could sort out the support for Miss A. This meant the family could have a routine again; for Miss A, it meant that she could have a routine again. It takes time for Miss A to trust people, and it also takes time for the support team to know how to communicate with Miss A; this break in the plan funding meant, in some ways, the family had to start again with support.
While eventually, things worked out for Miss A and her family, the interruption to support and the need for the entire family to take leave to be there for her where had they not run out of funding and had the review process not been so backlogged, the supports Miss A would not have been disrupted.
If you are reading this article as a provider to those with an NDIS plan, it is important to be aware that when the NDIS funding does run out, it is not simply topped up, and the NDIS will not guarantee to pay the invoices for services after the funding runs out. It can take over 6 months for manual payment requests to be reviewed and a decision made. It also impacts the person living with a disability and their informal support when services are interrupted.
If you want to share your story or that of a family member or learn more about the Uniquely Me Project, visit our website, Break Free Consultancy, or contact us.
We would love to hear from you.
Written by Jacqui Grant
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(C) 2024 Break Free Consultancy
Disclaimer: To protect Miss A's privacy, we have used photos that are NOT hers.