Meet Mia and her mum Nancy. Nancy is a carer who accesses respite services through the Independent Living Centre WA’s Commonwealth Respite and Carelink Centre.
The Commonwealth Respite and Carelink Centre assists over 160 carers, through the Respite support for carers of young people with a severe or profound disability program, who care for a family member, neighbour or friend with a disability. Seventy care recipients are children aged up to 14 years. The Centre supports carers with coordination of services and access to funds.
The Respite Centre’s objective is to ensure equitable access for carers to a range of respite services, including in home and out of home settings, and to improve carers’ access to respite care on a short-term basis or in emergency unplanned situations.
Mia was diagnosed with a congenital disorder Septo Optic Dysplasia, Optic Nerve Hypoplasia and Borderline Pituitary Functions, which meant Mia was born with midline brain abnormalities, bilateral blindness coupled with low muscle tone.
Nancy contacted the Commonwealth Respite and Carelink Centre after a discussion with her Local Area Coordinator for Disability Services and Visibility.
Nancy was happy to speak of her experience accessing services from the Centre which resulted in her being able to attend Braille lessons.
“We read to sighted children since birth. Why not give Mia the same opportunity? To give her the chance to read… not through sight but by touch,” said Nancy.
The Braille lessons would span across a 12 week period and to enable Nancy to attend the Commonwealth Respite and Carelink Centre liaised with both the service provider and Nancy to achieve this goal through respite provision for Nancy as the carer.
The idea of leaving your young child in the care of a stranger can be difficult and is more profound when your child has a severe disability. The Centre worked through Nancy’s concerns by carefully selecting a suitable organisation that has the right support staff with the necessary skill set to care for Mia.
The Carer Respite Centre was able to reassure Nancy that all of our service providers have to meet the requirements of the Department of Social Services, including having a police clearance and working with children checks.
Nancy continues to access the respite program and liaise with the service provider as Mia’s needs change. As it became more apparent as Mia got older that she was unable to verbalise her needs, both Mia’s parents, Nancy and John attended a keyword signing workshop. In this instance, the Carer Respite Centre was able to support Mia’s parents in this endeavor.
Mia is now able to sign 13 important needs in her daily activities. This has reduced Mia’s frustration and has empowered her parents to meet her daily needs.
It is wonderful to hear Mia’s sisters are also learning Braille and keyword signing to be able to communicate with their baby sister. Nancy continues to learn Braille and sits her exam in June.
Despite the diagnosis and the many obstacles that Mia will most certainly face, her mother Nancy is determined to give her daughter every chance at living a fulfilled life.
If you would like to access carer respite services please call 1800 052 222 for more information.