The Pressure Effect of NDIS Funding

“I just need a letter to support my child’s NDIS plan review, so we can continue 6 sessions of occupational therapy and physio per week.”

Unsurprisingly, the parent that opened our first consultation with this line looked flustered. Her NDIS (National Disability Insurance Scheme) funding was nearly finished after a few months and there was desperation in her voice. She had decreased her paid work hours to accommodate her child’s therapy requirements across three different providers. Two hours of school per week had been replaced with allied health therapy, which was arranged via a complex parent-school-therapist negotiation. The parent felt guilty about having less time to spend with her other children since NDIS funding enabled the extra therapy hours. All her energy was directed to her 8 year old boy with mild cerebral palsy. When questioned about how she would keep up with her current regime, she cried.

One year ago, I would have called the above example a simple matter of over-servicing. I would assume inadequate communication between health professionals to be a major factor. But as more of these cases are surfacing, I’m suspecting there is a deeper driver.

I have never met a parent with bad intentions for using their child’s NDIS funding. There might be misplaced guilt, fuelled by perceptions of “not doing enough”. A number of excellent allied health providers have told me about the pressure of families demanding more therapy, and that additional providers are sought if the request is refused.

This is my view of the timeline:

1) A parent has been raising their child with a disability using funding prior to NDIS. The non-negotiable funding regimes have limited the quantity and type of service providers which can be accessed.

2) NDIS funding is approved, which usually allows substantially more access to therapy, recreational activities, respite and equipment. Despite the challenges with developing such a complex system, most families find this beneficial.

3) There is minimal guidance about how NDIS funding can be used. Support co-ordinators generally do not know the details of a typical rehabilitation management plan. Many parents are under the impression that more therapy leads to better results.

I often tell parents to think about allied health therapy like medication:

· It must be used for a clear reason
→ Set meaningful and functional goals.

· The dose should be individualised and adjusted as needed
→ Taking more isn’t necessarily better, and this could even be harmful.

· It’s ok to take a break
→ Spending time with family and friends is vital to everyone’s well-being.

Going back to the initial example, we needed to discuss a typical therapy regime for a child with mild cerebral palsy. We replaced hydrotherapy with mainstream swimming classes at the local pool and switched to a block therapy model. During a case conference, we realised that his ankle orthotics were actually inhibiting his ability in certain situations, so we gave him complete control over when he wore them. He responded to this responsibility with increased self-confidence. He might have less funding in his next NDIS plan, and everyone agrees that this could be helpful for both him and his family.