For young people with high care needs, family is the glue that holds everything together.
For Kyle and his family, that support comes from not only his immediate family, but the family they have chosen for themselves. Aileen, Kyle’s Godmother has been there for Kyle, his brother and sister, his Mum Helen and Dad Paul through thick and thin, researching and writing applications.
“The Tanner’s don’t have any family over here – we’re the family that we’ve chosen for each other.” – Aileen
Kyle, who is now 18, has Muscular Dystrophy. As a recent high school graduate, he is missing the structure of the school system, where he was learning something new every day. Being very intelligent with an excellent memory, he is a big fan of the Brisbane Broncos and has even done some work experience with them. Kyle spends two afternoons a week at the Northgate Devils Football Club and has his own blog called ‘Follow my League’.
His Mum Helen has noticed a real difference between Kyle being at school and being a school leaver, at home with the family. She describes his life as being easier, and says that now he is bored and frustrated with the novelty of being a graduate starting to wear off.
“When he was at school, he had a lot of care and support all of the time. It was only really tricky in the holidays.”
“Now, we are getting carers come to the house which the NDIS has helped with. We like having the care, but we do not like having the intrusion on our family, or in our house. Before that though it was very hard work, we’d have to do a whole marathon to get Kyle ready for the day before we even left for work.” – Helen
The Tanner family were experiencing many gaps with their funding and so, Aileen helped Helen apply for a Youngcare At Home Care Grant. The purpose was to seek money to fill the funding gaps between Kyle leaving school and when he started accessing the NDIS.
“There was also a lot of grey area because of school, being a school leaver. He wasn’t 18 at the time, so he was considered a child.”
“It gets to a point where you are so tired and you just don’t care. It becomes another full time job, there’s just so much to organise. I was so grateful for the help.” – Helen
As Kyle was not yet 18, he was technically ineligible to receive the grant. However, due to the circumstances, Youngcare was able to provide the money needed for respite and extra care. This is just one case for support of the Y Kids grant, which demonstrates where there are gaps in funding for people under the age of 18.
Kyle’s 18th Birthday Celebration
“Kyle was about to go in for a big operation – he had a spinal rod insertion to straighten him. Many Muscular Dystrophy kids get a curvature of the spine. We knew it was coming up in December, after he finished school. The NDIS was not in yet, so we had no care.”
We thought the grant could help with extra nursing care after hospital, and maybe some physio. Then we thought mum and dad could probably do with a good rest after the operation so we asked for some respite, too.” – Aileen
Unfortunately, Kyle had an accident in his wheelchair on Christmas Eve, two days after returning home from the hospital after his surgery. After falling out of the front door, he landed with the wheelchair on top of him, breaking the kneecap on his right leg and the tibia on his left leg.
Due to this accident, the family and Kyle needed to reallocate their funding in order to pay for the extra care that he required.
“There’s no way, no funding for that, so it’s a huge expense. If they had to pay out of their own pocket, they would not have been able to do it,”
“You can’t anticipate that kind of accident, and if you don’t have enough coverage with NDIS, it’s not quick enough to cover it. Emergency funding is so important, the only option without that would be to put him back in hospital.” – Aileen
Stuck with a lack of options and limited funding over the Christmas period, the family were able to make the most of the Youngcare Grant in order to have appropriate care, at home for Kyle. This allowed him to recover in the comfort of his own home, with his family around rather than in an unfamiliar and uncomfortable environment.
“If we couldn’t have looked after him, he probably would have had to go somewhere like aged care or back to hospital and stay there,”
“I would never in my wildest dreams thought that something would happen to him, you know I thought he survived the surgery, he was home, and then the accident happens…” – Helen
The Y Kids Grant will continue to fill the gaps that present themselves for children aged 0 -17 who are unable to fully access the NDIS or experiencing problems receiving the appropriate equipment that allows them to live a fulfilled life.