Assessing Children’s Disability Needs in a Time of Crisis

Last week, up to 100 people gathered at the round hall of the Four Courts in protest at emergency COVID-19 measures passed by the Oireachtas. The legislation challenged includes the Health Preservation and Protection and Other Emergency Measures in the Public Interest Act of 2020 and temporary restriction regulations introduced under the Health Act of 1947. Measures that were introduced to combat and have proven to be effective in loosening the grip of COVID-19 on Irish society.

The protest was in defiance of medical guidelines and social distancing measures and the protestors put themselves, court-staff, court-users, and members of the public at risk. It also disrupted an already congested court-system, as several cases could not be heard that day for obvious health reasons.

For the parents seeking an application on behalf of their child to enforce a statutory right under the Disability Act of 2005, disruption, uncertainty, and delay are unfortunately something they have grown accustomed to in recent times. The application sought under the 2005 Act was for the completion of the child’s Assessment of Need. Essentially, the purpose of an assessment of need is to inform services what health and educational needs may arise from a child’s disability and what supports are required to meet those needs.

Partner, Gareth Noble refers to assessments as “an important gateway for accessing services for children”.[1] It provides a framework for the necessary supports and treatments to be put in place to improve the function and quality of life of the child from a young age. As a result, it was put on a statutory footing in 2005.

The Disability Act is self-described as a law to enable provision to be made of an assessment of need for persons with disabilities.[2] In doing so, the 2005 Act provides that an assessment must be commenced within three months of an application being received and completed within a further three months of commencement. It is specifically not a defence for the HSE to cite lack of resources as a reason for non compliance with these timeframes.

For some children this may involve diagnosing a physical disability, assessing physical support needs and ensuring the necessary supports are in place for that child at a critical stage in physical development. The same applies for children with psychosocial disabilities. Early diagnosis and intervention have proven to be critically effective in the reduction of challenges and increased cognitive and adaptive function for children with Autistic Spectrum Disorder. [3] In doing so, early intervention provides greater opportunity to support health development and improve function and quality of life.

Unfortunately, early intervention has not been a reality for many children with disabilities in Ireland. As per the HSE, 3662 applications for needs assessments of children with disabilities were overdue at the end of October 2019.[4] In practice, this can mean at least a two year wait between diagnosis, assessment of need and identifying the necessary supports being put in place. This results in many children facing the dual hurdle of long waiting lists for needs assessment, followed by further delay as they wait for already-stretched services.

The repeated failure of the health service executive to assess children’s needs within the timeframe has seen a number of cases be brought to the High Court seeking orders compelling them to do so. Separate legal challenges are also seeing remedies of damages being sought, including aggravated damages, for alleged breaches of duty and rights as well as orders compelling the HSE to complete assessment of needs withing the timeframe.[5]

This ongoing failure also has human rights implications. A failure to provide these assessments and services potentially amounts to a failure to respect the child’s rights under Article 8 of the European Convention of Human Rights. Likewise, it is in contravention of Article 11 of the UN Convention on the Rights of Persons with Disabilities (UNCRPD) which expressly recognizes that children with disabilities enjoy the same rights and freedoms as others.

From a legislative perspective, it has been 15 years since the Oireachtas passed the Disability Act. At the time, Ireland’s disability strategy was hailed for its proactive role in promoting disability-rights and the newly ratified United Nations Convention on the Rights of Persons with Disabilities (UNCRPD). Disability rights under the 2005 Act however, boil down to a statutory entitlement to an assessment of health and education needs.[6] Essentially, the Act introduced a statutory entitlement to have one’s needs assessed, the right to a service statement, the right to a review of the assessment. Ongoing legal arguments centre over seeking an enforceable right to any service which may flow from the assessment.[7] Service entitlements under the Act and the quality of the assessments themselves will undoubtedly be a concern considering the stark economic predictions for post-COVID-19 Ireland.

The issues referred to in this piece long pre-dates COVID-19 and stems from poor management and a lack of funding and proper prioritisation. Successive Governments have touted the importance of early intervention but failed to put any meaningful policy in place to make it a reality for children with disabilities.

The reality is that COVID-19 has simply brought more uncertainty and delay to a system which was in disarray long before the virus. The position continues to worsen as there has been a failure to release a practice direction/guideline to conducting an AON or providing services to children with disabilities amid COVID-19. All the while, families are struggling in a stretched system that offers no meaningful support as both families and staff tasked with delivering services agree that changes and investment is needed to deliver proper services to every part of the country.[8]

AILBHE HANMORE and RORY KNIGHT

[1] https://www.irishtimes.com/news/crime-and-law/courts/high-court/hse-could-face-hundreds-of-cases-over-special-needs-assessment-delays-1.3259831

[2] Disability Act 2005

[3] Kalb LG, onset patterns prior to 36 months in autism spectrum disorders (2010)

[4] https://www.thejournal.ie/early-intervention-delays-ireland-4594895-Apr2019/

[5] https://www.irishtimes.com/news/crime-and-law/courts/high-court/woman-seeks-damages-over-delay-in-hse-assessment-of-son-1.3719859

[6] J De Wispelaere, Disability Rights in Ireland: A chronicle of missed opportunity 521

[7] ibid

[8] https://www.thejournal.ie/early-intervention-delays-ireland-4594895-Apr2019/