Looking around one of my Support Coordination workshops recently, I noticed that several women in the group were fanning themselves with a reasonable and necessary checklist. It occurred to me then that many of us NDIS warriors are fighting a battle on two fronts. This is a blog for all those women.
Below, you can find my list of four similarities between the NDIS and perimenopause. If you can think of others, I would love to hear them.
1. Everyone’s experience is different
One of the biggest sources of frustration with the NDIS is the complete inconsistency of its implementation. From region to region, from one week to the next, from Planner to Planner, it seems like nothing is certain. Two people who seem to have similar disabilities and circumstances can end up with completely differently levels of funded support. Moreover, the experience of providers is equally variable. While Support Coordinators in the remote NT are struggling to connect people with any providers at all, their colleagues in the cities strive to help people distinguish between the multitudes of providers all promising the same “good life.”
Yet although everyone’s experience of the NDIS is different, there are some things that are dependable. Wherever they are in the country, everybody in the Scheme stands to benefit from having the language to negotiate a great Plan and the understanding of fund flexibility to get the most out of it. Supporting people and families to learn these skills is the best way all providers can ensure everybody gets a fair deal from the NDIS.
2. Only those living it or working with it are interested in talking about it
Have you ever tried to talk about the NDIS with your beautician/real estate agent/financial planner friend? If you are lucky, they know what the acronym stands for. It’s not until people reflect on the fact that 1 in 5 Australians live with disability that they realise we’re all connected to disability in some way.
Yet nearly every business in Australia can play a role in creating a more accessible country. Beauticians could offer NDIS funded in-home pedicures for Self-Managing Participants who are unable to care for their own toenails. Real estate agents can support people who are not eligible for SDA to enter the mainstream rental market by making the application process more accessible. They could be funded for this support through the ‘Improved Living Arrangements’ support category. With only 10% of families in the NDIS making financial plans for their future, financial planners have the opportunity to bring more security to people’s lives. The best way to bring people along for the NDIS journey is to get them excited about the unique role that they can play.
3. So. Much. Rage.
One word. Transport.
Actually, let’s make that two words: Transport & Assistive Technology. (Well, technically that is three words).
4. Transition is hard
We are on a plane that is being built in flight – a BHP sized $22billion p.a. plane. Transition time was always going to be messy. Currently, if you call the Agency five times with a single question, you are likely to get five different answers. I used to view this lack of clarity from the Agency as a point of anguish, but I now feel that this is potentially the single most important time in history to influence the future of the Scheme. We have a once in a generation opportunity to push the boundaries of the Act, Operational Guidelines, Price Guide and Plans. We don’t actually have to rely on the Agency for all the answers. Instead, we can interpret, test and learn together.
And if that doesn’t convince you, think of it this way: transition is hard, but as any woman who has lived through perimenopause will tell you, it will one day be over.