Service providers stories from the front line

Unfunded Supports

I have had the opportunity recently to hear from both providers and participants about their experiences within the NDIS. The provider bashing of late, framed by Minister Shorten’s letter to NDIS Participants, is fueling an adversarial context. Over the next few months, I am going to share some of the provider and participant lived stories as I am hopefully that by sharing the good and the bad, we can acknowledge that we are all on the same team and the best ending is a self-sustaining insurance scheme, where NDIS participants are appropriately supported to access the opportunities of life equal to their peers.

In the stories the names of providers and participants will be changed to protect their privacy and integrity. This is also done intentionally to show that the felt experience is not all that different across the board.

If you are a service provider or participant and you want your story shared, please email angela@supportingpotential.com.au

Our first story is about ‘Daisy’ and her SIL provider ‘Amazing Services’. Daisy loves to spend time with her people and will never present herself without a beautiful hairpiece. She has lived in this location with this SIL provider with her friends since well before the NDIS was thought of. Daisy has a formal diagnosis of severe intellectual disability, epilepsy, bilateral talipes, lymphedema and type 2 diabetes.

To live her best life, she needs help to mobilise in almost every setting. After a prolonged hospital visit following a severe covid infection at the height of the pandemic, the progression of her lymphedema had led to her being less physically mobile and having pain and swelling in her legs. This has meant she is having more falls, is relying on her wheelchair more and putting on weight. Daisy has received reasonably consistent funding from the NDIA. She goes to day program four times per week and has a loving family that like to take her out during the weekends. The agency have previously funded a manual wheelchair, and other assistive technology such as a standing lifter for transfers and a camel lifter.

Daisy likes to be as independent as possible. Often during her funded sleepovers she will try to get out of bed on her own and suffer injuries from falling.

Daisy is very proud of her appearance and her personal care routine is important to her. Given her recent weight gain and her reduced mobility Daisy needs 2 support staff to safely help her stay clean and present herself the way she wants. On a good day, she will try to do step transfers with a little help, however, on bad days she needs a backup full-body hoist, and continues to require 2 staff.

Over 12 months ago, Amazing Services put in a change of circumstances to the NDIA because of Daisy needing more help to maintain her life. In this wait, Amazing Services have paid for:

• A power assist attachment for her wheelchair.
• Workers compensation claims due to multiple support workers suffering an injury due to the lack of the power assist and from Daisy falling onto staff while helping her with her previously unsuitable shower/commode chair.
• A new bariatric shower commode.
• 2:1 supports for 2 hours per day to safely and comfortably help Daisy get out of bed and ready for her day and then to clean up after her day and go to bed.
• A wheelchair accessible van for Daisy to safely access the community.

None of this has been funded. Amazing Services is a small not for profit. It is clear from seeing Daisy, her family and the brilliant staff, that there is a genuine desire to help Daisy live her own life to the best of her ability.

Fast forward to the start of May, despite calls and emails from her Support Coordinator and family, 1 year on from the original lodgement of the change of circumstances, Daisy is contacted by a planner. The planner booked in the time for the meeting with Daisy and her supports. The planner changed the meeting at the last meeting to be over MS Teams. She had never previously met Daisy. She also confirmed at the start of the meeting that she had not read all of the documents, paid for by the NDIA and needed to support the change of circumstance submission. Unfortunately, Daisy would not be getting any other funding as there was not an assessment to confirm her disability. Further, her need for more support and assistive technology, was due to her lymphedema, which is a medical condition.

This story has presented several complexities and challenges. Fortunately for Daisy, her service provider has continued to meet her needs, but this comes at a cost. Conservative estimates suggest that Amazing Services have provided over $50,000 of additional and unfunded supports to Daisy. Their ability to do this is due to the longevity of the organisation and a well-kept, historic, balance sheet. And yes, they are not for profit, but how long can that last for.

Amazing Services are stuck in the difficult position of risk shopping.

Do they:

1. Continue to provide unfunded supports to Daisy (and likely others) and continue to watch their resources dwindle, to the point they realise they are insolvent. All the Amazing Services participants would have to find a new service provider and the existing employees would no longer have a job
2. Amazing Services only provide the services that they are funded and have agreed in their service agreement to provide. This then creates a different risk proposition:
   1. Does Amazing Services direct their staff to conduct unsafe manual handling, putting the staff and Daisy at risk of harm as well as breaching WHS legislation.
   2. Does Amazing Services direct their staff that they can not safely do manual handling and therefore Daisy is to remain in bed until her plan can be reviewed. This would then be a potential breach of both the NDIS and Disability Discrimination act.

 

If you are the CEO of a service provider like Amazing Services, what do you do?

 Whilst I appreciate the time, commitment and brainpower that has been invested into the Royal Commission and the NDIS Review, I don’t believe either have presented solutions that are ‘outside of the box’. And whilst the realist in me appreciates that any solutions will take too long to have a positive impact for Daisy, we need to go back to fundamentals so that the future ‘Daisy’s’ might benefit.

What if….

• The Agency moves to a system were Participants store and control access to all their own data and reports in one convenient application.
• The participant can give and take back access to their documents as they see fit.
• They can say the different types of the support they want and providers can say how they would go about achieving this.
• Artificial Intelligence can then overlay the extensive words that surround a person’s NDIS funded supports to provide summaries of key changes or needs. Streamlining the process of plan reviews.
• What if as the participant’s information changes, e.g. a new functional assessment or multiple incident reports, this creates a flag to the agency that a review is needed for this person. All automated based on consistent criteria.

The benefit of this approach ensures the supports are person centered as the participant controls their own information, rather than the current environment where the Service Provider develops a support plan. Creating triggers based on data that automatically trigger a response from a human to review the changes in information.

Now… Given the way the Proda portal and Pace run; we have more chance of the government scrapping the scheme than this ending coming to fruition. So, what about the different government agencies just collaborate on supports needed. In Daisy’s case, is it really relevant if lymphedema is a disability or a medical condition? The goal should be to ensure all people can engage with the environment around them. If left unsupported, both the health care system and NDIS are likely to experience much higher costs.

Stay tuned for our next adventure in NDIS Land. And please feel free to email me with any blue sky solutions for the NDIS.

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