A career spent working with families caring for their children with disabilities left Publisher Elisa Elwin with the desire to provide an ongoing service to these kids and their families. This is the first of a series of articles aimed at bringing families with disabled children information on family friendly activities, accommodation and travel services.
Fresh out of my Social Work degree I chose to work in the field of special needs. That was over 30 years ago, (time flies), and my experiences with the thousands of families I met and worked with have taught me so much about human dignity and value.
I was a newbie when my job had me working on the Richmond Report, a government initiative. This required me to participate in the closure of large residential care facilities, or Institutions. Finally it was being acknowledged that all people, regardless of their needs, deserve the opportunity to live their life with the same opportunities and rights as the general population. It was a huge step forward that on the diagnosis of a disability at birth, families were no longer being quietly advised to “place the baby somewhere, have another one and move on with your lives”.
The catchphrase was “normalisation”. Institutions were closed and the residents were moved slowly and with great care and support into the suburbs to lead a life as part of the broader community.
It seems almost unbelievable that back then some neighborhoods held protests about people with special needs moving into a home on their street. Happily in 2011, it appears the community is willingly taking part in the ongoing movement of acceptance, opportunity and integration of all people in all parts of our lives.
Having written that chirpy little statement we still have a long way to go.
I recently spent time with the delightful El-Hacham family. Siham and Gus are flat out like any other full-time working parents. They try to juggle the needs of their brood of three, Rachel 13, Jacob 8 and David 6. Giving each child special time in their already busy lives is, as for any family, a huge responsibility. But the El-Hacham’s have an extra challenge – their much-loved son, Jacob, was born with significant disabilities and meeting his high-care needs is virtually a full time job on its own.
The task, as they see it, is to keep family life as normal as possible. This means, of course, that wherever the family goes, Jacob goes. Especially when it’s time for fun! I met the delightful El-Hacham’s at a weekly extended family BBQ. Their home was full of laughter, babies, children tearing around and delicious smells as dinner was being prepared by lots of helping hands. Finding Jacob was easy – I just followed the sound of his delighted shrieks from the adjoining room. “He loves this TV show,” said his smiling father, as an introduction. It’s clear that this is a very close and loving extended family.
I asked the family how they manage successful and fun holidays with all three kids. The answer – lots of planning! Considering Jacob’s low boredom threshold and the equipment he requires, they have, so far, only ventured on road-trips. The family has a garage full of equipment to assist his independence and choosing and packing the essentials to take with them on a road trip takes time.
They face obstacles whenever they take Jacob. Sometimes it’s rooms that are too small to house his wheelchair or beds that are too high. Or a theme park with no rides that will take him, meaning one parent must sit and wait with him which can become tedious for everyone. Going to the beach raises another plethora of issues – wheelchairs and sand don’t mix. How do the family get Jacob anywhere near the water? Where can you find wheelchair accessible swimming areas? And as Jacob grows and weighs more his family are continuing to face the pure physical challenges of including him in their down time.
Do your research – there are great websites offering advice and information on travelling and outings.
I experienced only a snippet of the El-Hachem’s frustration when I made enquiries about the family taking Jacob to the zoo. I checked Taronga Zoo’s website for disability access information – parking, toilets, and… “can he and his wheelchair go on the sky rail”? I struggled to find the information, it was cloaked under too many click-throughs and navigation I found a little unclear. I called the zoo and spoke with a lovely operator who happily answered “yes” to all my queries.
Proactive, positive and helpful, she suggested I write to the zoo to mention the difficulties I’d faced navigating their site. A reminder prod to make services and attitudes accessible for everyone never goes astray. It was great result in the end but it still took an hour before I was able to organise the El-Hachem family a day at one of Sydney’s most loved attractions. This is the kind of time people in their position simply wouldn’t have to spare.
Gus and Siham have a wish list of “family fun” trips and activities they would like to share with all of their three children. Taking Jacob along requires more planning and preparation. Any family travelling with a child with a disability deal with endless issues over accessible properties, suitable activities, travel planning, and even the management of the equipment, medications and issues specific to manage their child’s needs. But it is not impossible.
When you’ve decided on your destination, call and make sure the accommodation and access meets the needs of your family. Let them know what you need, be it a ground floor room, level access or close parking. Most destinations and travel services are fully aware of the requirements and laws assisting travellers with a disability.
And finally, every expert extols the virtues of “planning, preparation, pack everything you need and more planning.”
How You Can Help
The Out & about With Kids team plans to bring readers regular information on family friendly activities, accommodation and travel services recommended by you, our readers for this challenged group.
We would love to hear from about your positive travel experiences and recommendations of great places, services and fun activities for children with disabilities and their families.
We’d also love to hear from providers that offer user friendly services for families with a disabled child (or parent).
We’ve included a few helpful sites for your reference.
A great disability information resource. This site provides information about entertainment, accommodation, sights and attractions, shopping, travel and transport for the bigger cities in Australia.
This non-profit organization is run by parents of children with a disability to assist other parents caring for a child with a disability
This site provides information to assist in maximising independence for people with disabilities, their families and carers.
Disability Information Officer
Phone: 02 9942 2686
Fax: 02 9942 2371