Does it seem to be a rite of passage for parents and guardians to feel nervous when they know that their loved one is about to turn 18?
While planning their big night out, they’re probably anticipating the answer to ‘what’s next?’ in their life. Off to university? A gap year? Binging Netflix while they’re sprawled out on the couch with us nagging them to find a job or do something with their life?
With my little brother, who is diagnosed with cerebral palsy and epilepsy, turning 18 this year, the question of what’s next in his life became a big and heavy question to answer.
A question that could only be answered in a NDIS Plan Management meeting.
A NDIS Plan Management meeting is where a participant is able to look at all of the details around their life, such as what their daily life looks like, how much support is needed daily and how well a participant can perform a task by themselves (mobility, health, well-being, relationships, and motor skills), what the participant wants to achieve with the help of NDIS (short and long term goals), and how their disability affects the people around them and most importantly, their primary carer.
In attending the meeting, which lasted for 3 hours or more, we were able to identify what was and wasn’t a feasible plan for my little brother’s future. We knew that we wanted to encourage his independence as much as his disabilities would allow for. We wanted to be able to offer him the ability to have choice and control in his own life. And we also wanted to see him be more involved in the community, where he was able to meet new people (he’s so much more of a people person than I am!) and continue to play tenpin bowling, an activity that he absolutely loves!
But it also made us face a harsh truth – we wouldn’t always be able to support him at his foster mother’s home as his disabilities would become more demanding on her and unfortunately, we weren’t immortal and at some point we would all pass away.
This harsh truth, as emotional as it made us all feel during and after the meeting, was what brought us to SDA.
SDA stands for Specialised Disability Accommodation and as NDIS explains, ‘[SDA] is a range of housing designed for people with extreme functional impairment or very high support needs. SDA dwellings have accessible features to help residents live more independently and allow other supports to be delivered better or more safely.’
For my little brother, this meant living in a home where he would receive the support he needed to perform daily tasks, such as personal care, and receive immediate attention should he have an epileptic seizure. He would also continue to be the very social butterfly that he was, with there being other tenants and even 24/7 support within the home that he would live in.
For me, it meant a sense of comfort, peace of mind, in knowing that not only would he continue to receive the support for his disabilities but he would also be among others that I’m sure would love him just as much as everyone else that he’s ran into (remember, he’s much more of the people person than I am!). It also meant that I would be able to visit him, whether for just a day or overnight, as his sister and not continue the confusing role of sister/guardian/carer.
And let me tell you, having that diverse role in either your brother or child’s life is exhausting!
While there are still a lot of questions that need answers, such as which housing category would best suit him and how much funding will be accessible to him, beginning this journey now before he turns 18 is so important!
The next chapter in my little brother’s life is waiting for him, and we need to make sure that all of the words and paragraphs perfectly align to the life that we want for him.
By: Shannon Robeck, Customer Support at NDIS PROPERTY AUSTRALIA