World Down Syndrome Day 2020 – Day 11
The long wait for support
by Jibu Mammen
Nathanael was born in New Delhi, India in 2010. Due to the social stigma attached to anyone born with Down syndrome, a negative outlook within the society and lack of any infrastructure or support system in India, we knew he would not get a fair chance to live to his full potential. As parents, our main objective was to provide a positive environment and give him a fair opportunity so he can live an independent life when he grows up. After much research and consultation, his mum Nimi, being a teacher by profession, enrolled in a Master of Education, specialising in Special Education at Edith Cowan University. Her intention was to learn how to teach children with disabilities so we could teach our son the way he learns best. With that, we came to Australia in 2013 when he was just two years old.
Nimi had to work part-time while studying and I found a full-time job with a global company to support the extremely expensive course and to manage our daily expenses. With no benefits or subsidies, all expenses for his childcare, medical needs, and before-and-after school care had to be paid in full. A new rule was introduced at the time that parents on 457 Visas needed to pay fees for children to attend school, which added to the cost. Life in a foreign land with no family support and financial expenses was overwhelming, but we found some really great people in our neighbourhood and made new friends, who are now closer than family.
We came to know of DSAWA and met Nikki Schwagermann, who also has a child with Down syndrome and was of great help providing local information. We also participated in parent catch ups organised by DSAWA and learnt much from talking to other parents as well.
When Nathanael started school, we struggled with his before-and-after school care. But with some help from the principal, he joined OSHClub to be with other kids. We saw drastic positive changes in his personality, and we were much relieved to see that he was in the right environment at OSHClub and at school for his development.
After completing her course at ECU, Nimi eventually found a job with an independent school as a special education teacher and was kept on contract as she could not be offered a permanent role unless we were permanent residents.
We applied for permanent residency in 2016 which was, as expected, rejected on the basis of ‘excessive cost to Australian Community’ which was estimated at $5.7 million by the Medical Officer of the Commonwealth, despite Nathanael not having any medical problems generally associated with children with Down syndrome. Three years later, after a long and arduous process involving immigration lawyers, his paediatrician, specialists in the disability sector, his principal at JESC, OSHClub, our respective employers, DSAWA, DSA, some family members and friends who supported and helped us with the required documentation, we finally got our permanent residency in April 2019.
We are ecstatic and feel extremely positive regarding his future in Australia. He’s recently been approved access to NDIS. We sincerely hope that with the right support and infrastructure, he will be able to live an independent life and contribute to society in his own special way.