Invitation for the service of Mrs Dorothy Leigh at Tuckers Grovedale Funeral chapel

“Life is what happens when we are busy making other plans”. 

I was catapulted into the disability world 44 years ago when my son Greg was diagnosed at birth with Down Syndrome.  The first few weeks are a bit of a blur but I do remember a friend asking if I was going to bring him home, this was never considered as an option.

I also remember being referred to St Nicholas Hospital to have him registered.  We came up against our first brick wall when our application for what was then the handicapped child allowance was knocked back.

To appeal we were required to have Greg assessed by two independent doctors at the Children’s Hospital.  Our appeal was successful but little did I know appeals, submissions, political activism etc. would become part of our daily lives.  Fundraising, committee’s, workshops etc. would also become a lifetime commitment along with learning how to decipher acronyms, GSP’s, ISP’s, ATTS’s etc.

Because I was so unprepared and had little or no knowledge of Down Syndrome I had a lot to learn about the best way to cope and what to expect.  The urge to meet other parents was really strong, and as we were living in Heidelberg at the time we joined Kalparrin, which was then a playgroup for children from 0-6 years.  Sharing the experience and knowledge of other parents was a real comfort and my first taste of parents supporting parents which I still value to this day.

We moved to Kinglake in early 1979 and Rosie, who has Down Syndrome, joined our  family in May 1979.  She spent the first 3 months of her life in St Joseph’s Home in Ballarat.  Much to my horror I’d become aware that babies with disabilities were being made “Wards of the State” (often on doctor’s advice) even as late as the 1970’s.

Both Greg and Rosie attended the local kindergarten with me in tow.  Greg started school at the Whittlesea Day Training Centre (later Merriang SDS), which seemed the most appropriate setting for him at the time.  Rosie attended the local primary school for 3 1/2 years.  The first two years were really positive with a great teacher, full time aide, a top notch Principal and an accepting school community.  Staff changes and a reduction in aide time led to Rosie being unhappy, me being stressed and anxious and eventually to the breakdown of the program.

I was asked to keep Rosie home at times when the aide wasn’t there, which I wasn’t prepared to do.  One parent said “if Rosie comes to school tomorrow I am keeping my children home” and a teacher said to me “wouldn’t she be better with her own kind”.  Despite how the school attitude had changed, people were somewhat surprised when I decided to look for other education options for Rosie.

“What can you expect from parents of children like these!” stated a Special School Principal.  Parents are often judged as being non accepting, over protective, over demanding, too emotional, or too ambitious.  Fortunately attitudes are changing and parents are being recognised as life long carers, with much more to offer than just raising funds.  It was during the 1950’s & 60’s that concerned parents banded together to establish services when there was nothing available for their children.

I was among the parents invited to be part of the VALID Monitoring Scheme which was state funded, to play a positive role in ensuring group homes were real homes.  From there I moved on to attend VALID state-wide Network Meetings providing a forum to share information and gather feedback on systemic issues affecting adults with intellectual disability, their families and advocates.

This agenda ticked all the boxes for me and I am still here 29 years later.

I’ve seen many policy and attitude changes over the years.  VALID has been a major player and a positive influence in many areas:

1. Putting intellectual disability on the agenda and raising community awareness
2. Recognizing the significant role of parents
3. Promoting the growth of self advocacy
4. Supporting or rather demanding the closure of institutions
5. Engaging constructively with allies e.g. seeking commitment from parties at election time
6. Organising and promoting the annual Having a Say Conference and a number of expos
7. Providing information and support for people navigating through the NDIS

The time has come for me to stand down from the VALID Committee.  I feel very proud and privileged to be part of such a forward thinking, hands on organisation.  I have cherished my time working with intelligent, courageous and resourceful people.  While I am suffering withdrawal symptoms I am confident that VALID will continue to build on what has already been achieved.  I will stay in touch and continue to be part of the Geelong Parent Network which is one of the VALID Peer Action Groups.

Thank you to the people who have placed their trust in me over many years.