This week’s blog is written by Bernie Drayne, who’s daughter Roma has Mucopolysaccride Morquio Disease.
In 2006 disabled children’s campaigning charities and policy making groups came together in the UK to work for the Every Disabled Child Matters (EDCM) campaign. My daughter has disabilities and I was very interested in this campaign because, like any parent carer I was spending so much time arguing about wheelchair provision, inadequate services and life was full of medical and education appointments. I was particularly worried about inclusion and equality for my daughter. As a carer and social policy graduate I was unable to work except for short periods of time as an Information Officer. I was therefore very interested in the EDCM campaign.
The EDCM campaign had partners working in each of the Nations in the UK with links to campaigning disability organisations, policy makers, charities and local political representatives. Information & campaign literature for each nation was readily available to Parents who were encouraged to become active in lobbying government to fight for services for disabled children.
I clicked on the link for Northern Ireland, this took me to the Children’s Policy making umbrella group, Children in Northern Ireland (CINI).
Not only did parents not have access to campaign materials, – they were excluded from membership of CINI, prevented access to their policy information service and excluded from their information events, thus no parent participation whatsoever.
CINI’s remit is to influence and inform children’s policy development, and it works with all groups working in the Children’s disability sector – the Children’s Disability Strategic Alliance produces a periodic Manifesto highlighting gaps in policy, with updated key asks and calls for action.
The exclusion of parents by CINI has always been a source of concern. Why is policy discussed without the carer voice? Parents of disabled children deal with a multitude of issues but why is there such an aversion to co-production with parents? We are all working towards the same aims.
Policy revolves around the UNCHR – the United Nations Rights of the Child, and it is the job of policy makers to ensure that the child’s voice is heard and is enabled to participate with policy making. This is a laudable and essential priority, no-one would object to that. However – it seems this is used as a ruse to exclude parents from policy making. There is training for children’s participation but not parent participation – that is not on the agenda. Children do not write their own DLA forms, they don’t instigate SEN reviews, nor do they complain about services – it is parents who do these things.
It is now 2017 and the situation remains exactly the same, with regard to exclusion of parents. However, in England, Parent Participation with funded carer led forums working directly with policymakers has gathered pace – and respectability. It is not without it’s problems but it is a step in the right direction.
Today there are many NI parents of disabled children campaigning about various issues and gathering momentum on social media. The issues are many, waiting times for assessments, provision of new drugs, accessible play areas, changing place toilets, alternative education provision, education for pre school disabled children. Most parents are dealing with their own battles for provision privately whilst others are finding themselves at SEN tribunals which brings isolation and alienation.
If we really want to ensure the rights of disabled child are protected, we must ensure parent participation is on the agenda. Training and capacity building for parent led groups should be available. Parents should not be ostracized and excluded when they ask for inclusion. The unremitting defensiveness that’s comes from policy making groups should be challenged.
Why is parent participation so important? In the past year children with SEN have had their provision cut – parents were not involved in negotiations surrounding changes to SEN provision. If we look closely at the Children’s and Young People’s Strategy that is currently out for consultation, we will find a dilution of disabled children’s rights and issues.
We need to get parent participation on to the agenda, we need to use the rhetoric around co-production and public participation to become reality.
Bernie is a member of Facebook Parents of Disabled Children NI and NI Disability Carer’s Group. You can contact her at romadrayne@yahoo.com.