When you find out your child has a disability

Forestville mother, Vanita Connery received devastating news about her son, Jordan, when a geneticist diagnosed him at the age of 14 months with a Mucopolysaccharide Disorder; a rare disability that affects 1 in 200,000 children in Australia.

This terminal genetic condition means that Jordan, now five, is missing an enzyme needed to break down waste in his body.

For Vanita, on hearing her son would have severe intellectual delay, may not sleep for days at a time, encounter behavioural issues, along with hearing and sight difficulties, and would probably only live into his mid-teens, she was overwhelmed and went into shock, having not expected to hear news of such magnitude.

Daunted by the system and unsure what to do next, Vanita struggled in trying to access the information she needed to help Jordan and navigate her way through the difficult period following his diagnosis.

Families like the Connerys can now receive support from a new service available through Northcott Disability Services, Northcott EarlyStart Diagnosis Support (NEDS).

The new early intervention program works with the entire family unit and provides emotional support, information and assistance to access local mainstream and disability-specific services and existing social support networks or form new social links with families in similar situations.

Vanita Connery praises the new program, as she believes the support the new service could have provided her, in the form of a Family Support Worker, would have been invaluable to her and her family.

“White it won’t cushion the devastation, it will give you access to someone who is experienced, empathetic and not trying to deal with their own grief – unlike close family members,” Ms Connery said. “From the outset you would have one central, constant person who could help you advocate for your child and coordinate the raft of services they will need, making the whole process less overwhelming.”

Senior Family Support Worker, Hilary Smith, said the program aims to empower families to be in a position to meaningfully engage with information so that they can make the best choices for their child, whether they have a physical or intellectual disability.

“It is an emotionally charged and isolating time for families when their child is newly diagnosed with a disability,” Ms Smith said. “By providing emotional and practical support, linking the family into social networks and providing relevant, up-to-date information about services and support available locally for their child, the program aims to foster positive and sustainable outcomes for the whole family.”

“Another great feature of the NEDS program is the fact that families can access the service before their child receives a diagnosis,” Ms Smith said. “A family who has a concern about their child and doesn’t know what to do next can contact a Family Support Worker and receive guidance around how to proceed. Where many services require a formal diagnosis to have been made before a child or their family is eligible to receive support, NEDS doesn’t have this requirement and families can refer themselves at the first sign of a concern with their child’s development.”

The program is funded by Ageing, Disability and Home Care, Department of Human Services NSW. Northcott will be employing 10 direct support staff who will run the service in eight locations across the state, including Ballina, Central Coast, Coffs Harbour, Hornsby, Newcastle, Parramatta, Penrith and Tamworth.

If your child is under six years of age and you have just found out that they have a disability, or even if you think they might have a disability or delay but you haven’t spoken to anyone about it yet, please contact a Family Support Worker on (02) 9890 0100.