‘Carthy welcomes passing of Sinn Féin motion on disability services’ – Matt Carthy TD
Cavan Monaghan TD, Matt Carthy, has welcomed that the government facilitated the passage of a Sinn Féin motion in the Dáil last week seeking to improve access to services and assessments of need for children with disabilities.
However, Deputy Carthy said that the motion must be followed by action leading to drastically improved services for citizens with disabilities and their families.
Speaking during the debate on the motion, Teachta Carthy told the Dáil:
“The most frustrating and angering part of being a TD is when one is dealing with parents who are getting in touch in order to expedite getting healthcare for their children.
“It has to be said that no parents should have to contact any elected representative to tell that representative the most intimate details of the medical needs of their child to try to secure disability or occupational therapy or any other service that their child desperately needs.
“No parent should have to fight for years to secure an assessment of needs, which the law states should be delivered within six months.
“To reiterate, it is not just that the Government is failing those children and their families, the Government is breaking the law by doing so.
“In the HSE region for which Monaghan is accounted, last October there were 1,956 children waiting for an initial assessment for speech and language therapy, 1,444 were waiting for occupational therapy and 1,105 were waiting for physiotherapy.
“These numbers represent real children who are being denied the right to live full lives. They represent families who are going through the hell of trying to deal with HSE bureaucracy or the hell of listening to broken promise after broken promise.
“I met a mother today who travelled a long distance to be here for this debate. She has two sons with special needs, who have been cared for and loved by their family all their lives. However, they have been let down by the State every day of their lives. They are still being let down. Their mother, who has enough to contend with, had to establish a charity along with other families in order to provide her children with a service that should have been provided by the State.
“It is not good enough; it is not fair. In fact, it is a scandal.
“I commend Sinn Féin spokesperson on Disability, and TD for Cavan Monaghan, Deputy Pauline Tully for the work she has done and on bringing this motion to the Dáil. I commend the motion and I welcome the fact that it is unopposed.
“However, it must be followed through with real action and with the implementation of the words as well as the actions required in the motion.”
The full text of the Sinn Féin motion read:
That Dáil Éireann:
— early intervention is essential to meet the health and educational needs of children with disabilities and additional needs, in order to improve their quality of life from a young age;
— the Disability Act 2005 provides that an Assessment of Need (AON) must be commenced and completed within six months;
— section 8(7) of the Disability Act 2005 requires an AON to state determinations on whether the applicant has a disability, the nature and extent of the disability, the health and educational needs of the applicant, and the services required by the applicant;
— the AON process took an average of 29 clinical hours to complete before the introduction of the Standard Operating Procedure (SOP) which has limited the clinical time to 90 minutes, a reduction of 99.95 per cent in clinical hours for an assessment, which the Irish Human Rights and Equality Commission has said “undermines disability rights”;
— while AON waiting lists have been reduced following the introduction of the SOP and Preliminary Team Assessments (PTA), the professional associations representing the therapists and psychologists providing these services has said that the PTA is “not fit for purpose”, “the direct opposite of what is intended by the Disability Act, 2005”, “dilute professional standards of assessment for vulnerable children in need” and “results in the child being referred onto another waiting list for further assessment. This further assessment does not fall under the Disability Act so there are no statutory obligations for these assessments to be completed in a timely manner”;
— section 13 of the Disability Act 2005 mandates the annual reporting and publication of aggregate unmet need for the purposes of identifying gaps in service provision and the resources required to meet need, yet no report has been published since 2009;
— 212 legal actions were taken against the Health Service Executive between 2018 and 2020 in relation to overdue AON, amounting to €701,000 in legal costs for the State; and
— in October 2021, the Minister of State with responsibility for Disability advised the Oireachtas that the children’s disability teams were short 400 staff;
further notes that:
— there are long waiting lists for access to occupational therapy, speech and language therapy, and psychology services, including:
— 18,303 children on occupational therapy waiting lists;
— 9,532 children on psychology waiting lists; and
— 8,167 children on speech and language therapy waiting lists; and
— a survey conducted by AsIAm in June 2021, “Every Child Counts: A Report into Autistic Children’s Access to Healthcare in Ireland” found that 80 per cent of parents and guardians have had to wait a year or more to receive an autism diagnosis for their child, and 79 per cent said they were not in receipt of any support from either the Early Intervention or School Age-Going Teams;
condemns the fact that:
— in many cases, parents are forced to pay privately for an AON and associated therapies and interventions for their children, in order to access the necessary supports and interventions; and
— the current situation represents a gross and unjustifiable inequity in healthcare and education provision, where children whose parents cannot afford to pay privately, take legal action or who live in areas with long waiting lists, are at a significant disadvantage in accessing the supports which they need and deserve; and
calls on the Government to:
— cease using the SPO to skirt its responsibilities, under the Disability Act 2005, to children in need of support;
— provide appropriate, comprehensive, and clinically ethical AON in line with best practice as outlined by the professional associations representing occupational therapists, speech and language therapists, and psychologists;
— ensure prompt access to a diagnosis where required to access specialist health or education services and further statutory entitlements;
— immediately inform the Dáil of the measures it intends to take to ensure that all children receive a comprehensive AON within the timeframe set down by the Disability Act 2005, and to ensure that these children have real access to the services which they need;
— publish a costed and timebound implementation strategy for the Disability Services Capacity Review which includes targets to meet staffing needs;
— publish a cross-departmental strategic workforce development plan to train, recruit and retain enough health and social care professionals;
— publish all waiting lists for AON, further multidisciplinary assessment following AON, the number of open cases per Children’s Disability Network Teams (CDNTs) and the number of children with and without an Individual Family Support Plan, as well as lists for access to services and interventions which are past their due date;
— establish CDNTs in full, including the establishment of governance arrangements with a family forum attached to each CDNT;
— recommence reporting of data and publication of reports pursuant to section 13 of the Disability Act 2005, to provide an evidence base for future planning of service capacity for unmet need;
— immediately ratify the United Nations Optional Protocol to the Convention on the Rights of Persons with Disabilities;
— amend the Disability Act 2005, to provide for a multidisciplinary, needs-based approach to AON as recommended by the Ombudsman for Children’s Office in the October 2020 report entitled “Unmet Needs: A report on the challenges faced by children in Ireland who require an assessment of their needs”; and
— require the Disability Appeals Officer to apply for relevant enforcement orders where there are breaches of the Disability Act 2005, to avoid parents having to take lengthy court cases to vindicate the rights of their children.