Shania Turns Up the Music in a Home Designed for Her
Music-loving Shania has spent much of her life surprising the people around her.
Born with Trisomy 13, a rare and complex genetic condition, her parents were told there was only a slim chance she would live beyond her first birthday.
Today, Shania is 22 and Andrea describes her daughter as cheeky, inquisitive and always on the go.
Although Shania does not communicate using words, she has a big personality and expresses herself clearly through her body language.
She loves music, meeting people and knowing what is happening around her.
Now Shania has reached another important milestone, moving into a purpose-built home in Alkimos where she has more space, greater independence and her family close by.
The journey to finding that home began years earlier in country Western Australia, where Shania lived with her mum, dad and younger brothers.
As she grew older, the family found it increasingly difficult to access the hospitals, services and specialised support she needed, eventually making the move to Perth to be closer to medical care.
Then came one of the most difficult decisions Andrea and her husband had faced. They needed to decide whether it was time for Shania to move out of the family home and begin building a life of her own.
“We wanted Shania to have the same opportunities as other young adults,” Andrea said.
“We wanted her to meet different people, have new experiences and develop more independence, but we also wanted her to be safe and close to us.”
The decision was especially difficult for Shania’s dad, who struggled with the thought of his little girl leaving home.
At 19, Shania moved into Supported Independent Living accommodation.
While it gave her an opportunity to live away from her family, the property itself was not fully suited to her needs.
Shania likes to move around and explore her surroundings, but the home did not provide enough space for her to do this comfortably.
It also lacked some of the accessibility, safety and support spaces the family felt she needed.
Andrea knew the arrangement was not right, but she did not know there could be another option.
That was when Shania’s Support Coordinator, Amanda, began searching for a home that better suited the way Shania lived.
Amanda heard about a purpose-built Specialist Disability Accommodation property managed by GR8 Disability Housing in Alkimos and brought it to the family’s attention.
Supported Independent Living funds the assistance a participant receives with everyday activities, while Specialist Disability Accommodation provides a purpose-built home for eligible people with extreme functional impairment or very high support needs.
This means a participant can be receiving the right daily support while living in a property that has not been designed around their disability or the way they need to use their home.
When Andrea saw the Alkimos property, it felt different.
The home ticked every box.
Its open living areas gave Shania plenty of room to move and explore, while its wheelchair and hoist accessibility made it easier for her support workers to assist her safely.
There was also secure outdoor space, a dedicated area for overnight support workers and a large private bedroom and ensuite.
Shania’s bedroom was even big enough for her own couch, giving her somewhere comfortable to listen to music and relax while still knowing someone was close by.
“When we saw how much space there was, it just felt right for Shania,” Andrea said.
“She can move around without feeling cramped, and her support workers have the room they need to assist her properly.”
One of Shania’s favourite places is the dining table.
From there, she can look down the hallway and see who is coming through the front door. When someone arrives, she raises her hand to greet them.
“She loves knowing what is going on and seeing who is coming into the house,” Andrea said.
“She has her own space, but she still feels connected to the people around her.”
The location was another important part of the decision.
Andrea, Shania’s dad and her brothers live nearby in Ridgewood, allowing them to visit regularly and be there quickly if she needs them.
For Shania, the move has meant more space, new people and the opportunity to develop routines and relationships beyond her immediate family.
For Andrea, it has meant learning that helping her daughter become more independent does not mean stepping away from her life.
“She has a home of her own and more opportunity to live her own life, but we are still close enough to remain a big part of it,” Andrea said.
Specialist Disability Accommodation was new to the family, so Stephanie and Bernadette from GR8 worked alongside Andrea and Amanda to explain the process and support Shania’s move.
GR8 Disability Housing Director Stephanie Virgo said Shania’s story showed why it was important for families to explore their options when a home was not meeting a participant’s needs.
“Shania was receiving the daily support she needed, but the property itself was not designed around her,” Ms Virgo said.
“Her Support Coordinator understood what was missing and helped the family find a home that offered more space, accessibility and security while keeping Shania close to the people who matter to her.
“Every participant is different, so there is no single housing solution that will suit everyone. It is about listening to the person, their family and support team, and finding the home that is right for them.”
For Shania, that home is a place where she can move freely, listen to her music, watch for visitors from her favourite seat and enjoy more independence with her family close by.
For other families, there may also be housing options they do not yet know are possible.
If your child or family member’s current home is not meeting their needs, speak with their Support Coordinator or enquire with GR8 to explore what options may be available.
