Monique’s Story with Bayley House

A 26-year old with rare disease, Coffin-Siris syndrome, 1 of only 200 cases worldwide; went from homeless and no options to now having permanent ‘forever’ home.

Monique has a rare intellectual disability, Coffin-Siris syndrome, and one of only approximately 200 cases of this syndrome globally.

Monique also has Autism Spectrum Disorder, has limited independence and can’t read, write or even cross the road on her own. Her mum Felicity says that Monique is ‘a four-year old stuck in a 26-year old’s body’.

Earlier this year, Monique’s parents relinquished care of her after the National Disability Insurance Scheme (NDIS) would only fund Monique for supported independent living. Monique’s frustration was also leading to behaviours of concern. She was admitted to Frankston Hospital and then after that, became effectively homeless.

Following a review with the NDIS, additional funding for Monique was secured with Bayley House.

Now Monique and her family have requested to be part of Bayley House and BlueCHP’s housing project which will allow them to co-design Monique’s permanent ‘forever’ home, which will provide her with a long-term housing solution that is safe and stable.

Andy Gabriel, General Manager of Home and Living at Bayley House, says: “Monique’s journey reminds us of the profound responsibility we have to ensure that no one is left behind, especially someone as vulnerable as her. She is not just a person with complex needs. She’s a young woman with dreams, potential, and a right to a safe and stable home.”

Click here to support others like Monique to ensure that adults with intellectual disability can access the life-changing programs and opportunities they deserve.