Ireland has a law called the Disability Act 2005
This law says that people who have a disability can have an assessment of need
This assessment looks at ‘health’ needs
There is no right to any service the person might need
The assessment of need system is not going well with long waiting lists
Many people, including families and politicians, had called for a right to services
The UNCRPD says that people with disabilities have a right to full inclusion & participation
It is time to review the 2005 Act to make it stronger
In 1996, the report of Commission on the Status of Persons with Disabilities, known as ‘A Strategy for Equality’ noted that the Government had committed itself to introduce a Disabilities Act “to set out the rights of persons with a disability, together with the means of redress for those whose rights are denied”. In 2005, almost a decade later, the Disability Act was signed into law by President McAleese.
The Disability Act is self-described as a law to enable provision to be made of an assessment of need for persons with disabilities and to allow Government Ministers to make provision for services to meet the need. Crucially however, there would be no right to those services and the Act explicitly stated it was “consistent with resources”.
The Act was met with anger by people with disabilities and their families and many opposition politicians criticised the legislation. During one of the final debates in 2004 Labour’s Kathleen Lynch lamented the “restrictive” nature of the legislation, vowing that “we will, at some stage in the future, have legislation that gives people with disabilities the right to services and not just the right to assessment”. Finian McGrath TD also stated that “when we use the term ‘rights’ for people with disabilities, we do not do so lightly. We are talking about the rights of our citizens, both adults and children”. Deputy McGrath also argued the need “to ensure that services are there and that people with disabilities have these services as a right”. While both of these Dail Deputies would go on to become Ministers with responsibility for disability, the Disability Act has not, to date, been reviewed.
Even with the meagre entitlement to an assessment without a right to services, the operation of the Act has been challenging and it was not until 2 years after enactment that the assessments began, with Minister Mary Harney commencing Part 2. She did so, however, only for children under the age of 5 years old. This was disappointing and ensured that in effect many people with a disability would never be entitled to an assessment of their needs under this Act.
Imprecise wording on the Statutory Instrument giving effect to the commencement of assessments for the under-5s would later mean that any child who was under 5 years old on the date of the instrument’s signing. In effect, any child born after 1 June 2002 is entitled to be assessed.
The administration of the assessment of need process has become increasingly problematic with a report in December 2018 stating that over 3,500 applications were overdue, with Cork, Kerry and Minister McGrath’s own Constituency in Dublin North the worst affected. The current national average duration of the assessment process per report completed is now at 18-and-a-half months – up from around 9 months a decade ago.
The crisis in delivery of assessments brought a response from the HSE earlier this year when a new Standard Operating Procedure was mooted which would have led to a speedier assessment process. Opposition from professionals such as occupational and speech & language therapists and families on the basis of the quality of the assessment process has meant that the new procedure has not yet begun operation, and we must wait to see if it ever will.
The recent news that the High Court Judge had given the family of a four-year-old boy with autism leave to pursue aggravated damages against the Health Service Executive over its failure to deliver an assessment of need for him within the required timeframe will be watched with interest in order to see the extent to which the courts will enforce the right of the young boy to be assessed. If successful, the court will not just order the HSE to complete the assessment but also award damages for the failure to provide the assessment inside the statutory timeframe.
We must remember that the battle of this family is to secure an assessment of need for their child and that due to the limitations of the law, there would be no guarantee and no right to have the services that are needed to support the development of this child. It is doubly disappointing that compliance with the Act is so poor when we were so disappointed with the original Act. Had the Act provided a right to services, it begs the question of how busy the courts would be.
In the context of dysfunctional administration of the existing Disability Act, it may appear foolish to call for the review of the Act and for the rights within it to be strengthened. Yet, it is exactly that which was called for by many voices not only inside Leinster House but in every family support group across Ireland during the early 2000s.
The United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) contains the general principle that persons with disabilities have the right to the full and effective participation and inclusion in society. The Convention obliges States to adopt all appropriate legislative, administrative and other measures for the implementation of the rights recognized in the Convention.
We know that early intervention, correct supports and the provision of good services maximise the potential outcomes for people with disabilities and reduce the impact and the cost of interventions later in life. It is essential that a modern system of assessment for educational, social and vocational needs for persons with disabilities is introduced, and that this support is tailored across the person’s lifespan.
To do this, and in the context of the rights and obligations contained in the UNCRPD, it is time for Ireland to review and strengthen the Disability Act 2005.