INCLUSION IRELAND IS all too aware from our work that reform in disability law and policy moves at glacial speed.
Additionally, when policies are put in place and laws are actually changed they are rarely implemented, and children with disabilities and their families, in particular, are left fighting for the crumbs from the table.
Personalised Budgets
Take for instance the proposed system of Personalised Budgets which, when implemented, has the potential to revolutionise how disability services operate, placing control with the person with the disability or their family where appropriate.
Crucially, the report of the Taskforce on Personalised Budgets, which Minister Finian McGrath brought to cabinet last Tuesday, has excluded children. Inclusion Ireland was part of the Taskforce and, disappointingly, this decision comes despite no rationale and in the face of international trends towards no lower age limits.
We can draw no conclusion other than number crunching has trumped equality, leaving children and their families excluded from this key reform.
Tusla
Further evidence of the lack of prioritisation of children with disabilities is plentiful. Take the baffling exclusion of children with disabilities from the aegis of the Child and Family Agency’s (Tusla) services.
The former CEO of Tusla, Gordon Jeyes, told Inclusion Ireland that he had been a director of children’s services in three jurisdictions but that it was only in Ireland that he did not have responsibility for children with disability.
The widely reported ‘Molly’ case demonstrated what can occur when no agency is responsible for the safety and welfare of a child with disabilities. Inclusion Ireland’s call for Tusla to be given responsibility for children with disability alongside their non-disabled peers has been resisted and points to a system ill equipped and unprepared to respond to children with additional needs.
Add to this, the experience of children with a disability in our schools.
Right to education
So many younger children with disabilities are having their Constitutional right to education circumnavigated by the use of ‘short’ school weeks of two or three days due to inadequate resources.
When children with disabilities are in school, they are experiencing restraint and seclusion on an alarming scale. Inclusion Ireland is currently completing a report on the use of restraint in schools which will shine a stark light on the frightening experiences that many children with disabilities are having in our classrooms.
Thirteen years after the Disability Act was brought into law, it is time to admit that it has been a failure. The Act itself disappointed so many who wanted their children to have a right to, not only an assessment of need but also a corresponding service. Early intervention, long-established as an imperative to positive outcomes, has not been a priority for successive governments.
The assessment of need system is in disarray with flagrant disregard for the statutory time limits. Proposals to bring in a new operating procedure involving a 90-minute assessment have rightly been met with criticism by therapists, parents and unions. Once again, corners are being cut in the name of our children.
No meaningful support
All the while, families are struggling under the weight of a system that offers no meaningful support.
Children are told they will need to remain in wheelchairs during the school day, parents are told to call the gardai because there is no mental health intellectual disability service available, families are pursuing the State in the High Court simply to have their child’s legal right to an assessment of need realised, and children like ‘Molly’ spend years experiencing the worst forms of abuse because neither the HSE nor Tusla could decide who was responsible.
In April, Ireland finally ratified the UNCRPD after 11 years of excuses and delays. The Convention includes an Article expressly for children in recognition that specific measures must be made to ensure that children with disabilities enjoy the same rights and freedoms as all other children.
Considering the litany of failures by the State regarding children with disabilities and the recent decision to yet again exclude children, this time from the system of personalised budgets, the question must now be asked.
Why, at a time when we should be advancing the rights of children with disabilities as citizens of this State, are we letting them down more than ever?
Paddy Connolly is CEO of Inclusion Ireland.
To embed this post, copy the code below on your site
have your say