That’s why IHC Director of Advocacy Trish Grant is calling on all parties contesting the General Election to make the dream a reality.
“People with intellectual disabilities must navigate a complex system so they can lead ordinary lives,” she says.
For instance, funding could be coming from three different government agencies, services can be provided by multiple providers, and different groups may be safeguarding one person.
“People don’t know how to easily complain or get decisions that have been made about them reviewed by an independent person,” Trish says. “Services and government agencies don’t talk to each other and people end up telling their stories multiple times.”
Trish says the next government needs to create a centralised government agency – a commission or a department – to oversee all aspects of disability, such as funding, services, safeguarding, service improvement, protection of rights and monitoring wellbeing.
“We think people with disabilities are important enough to be reflected like this in government and they need an agency to ensure that every policy is examined through a disability lens.”
IHC is also calling on leaders to provide free six-monthly health checks for people with intellectual disabilities as well as increased training for healthcare workers on how to better work with and value people with intellectual disabilities.
“People with intellectual disabilities die two decades earlier than people in the general population,” Trish says.
IHC wants the Government to address its concern that students with intellectual disabilities are often excluded or denied the inclusive mainstream education they are legally entitled to.
“The Government wants to allow teachers to use force, which will disproportionately affect students with difficult behaviours,” Trish says.
“We think that force should stay out of schools, and school decisions need to be reviewed by an independent body.”
The Government is spending about $107 million more on disability support services in 2020, but disability support remains confusing and hard to access. “The review of disability support services just released identifies the need for better information about what’s on offer, easier access to streamlined support and national consistency of needs assessment and coordination services,” Trish says.
Trish says government agencies need to radically rethink disability services funding and move towards a single personal budget for people and families to spend however they need to.
“We also think the Government should fund more advocacy services for people with disabilities so they can have someone in their corner when they want to make decisions, and also fund mandatory training for general practitioners, lawyers and judges about supported decision-making.”
The Government has funded an expansion to disability employment services but there needs to be new thinking about how to employ more people with intellectual disabilities in meaningful work.
“We think the Government should create more targeted positions in the public service for people with intellectual disabilities,” Trish says.
“People in these positions could use their lived experiences to improve government policies,
procedures and services for people with intellectual disabilities.”
As the Covid-19 lockdown has highlighted, people with intellectual disabilities often experience loneliness, isolation, and poor wellbeing. Even the comfort of having a pet is denied many disabled people.
“We also think the Government should fund a SuperGold-type card for people with disabilities so they can get out and about in the world a bit more easily,” Trish says.
Sadly, it’s children and young people with intellectual disabilities who often have a hard time getting the support they need. During the lockdown there was widespread evidence from around the world that children with higher needs were regressing in their language and social skills because they weren’t able to access their usual specialist support.
Children here wait, on average, for 80 days to receive support they need.
In some areas children wait for up to 170 days for early intervention services. There are more than 4000 children on waiting lists and this number is increasing every year.
“More work needs to be done on scoping where demand is and determining how to provide it,” Trish says.
Children with intellectual disabilities are also at a significant risk of abuse. The World Health Organisation states that children with disabilities are 3.7 times more likely than non-disabled children to be victims of any sort of violence.
“We want the Government to target this group for added safeguarding, collect and maintain information about this group and create a taskforce to examine the deaths of children and young people with disabilities to develop strategies to protect this group,” Trish says.
It’s quite an election wishlist, but Trish says it all adds up to giving people with intellectual disabilities something extraordinary – an ordinary life.
Photo caption: Taking in the beauty of Lake Wairarapa after lockdown are (from left) Lilli Neves, Alan Rosemergy, Natalie McCarthy, Catherine Scully and Arlene Stringer. They try to make the most of what their community has to offer.
This story was published in Community Moves. The magazine is posted free to all IHC members.
Read the full issue of Community Moves.