Contact: Rachel Martin or Rebecca O’Riordan
Email: f.u.s.s.ireland@gmail.com or fusscork@gmail.com
PRESS RELEASE: For Immediate Release
On Saturday 10th September 2022, FUSS attended a meeting with Taoiseach Micheál Martin in Cork to discuss the ongoing mistreatment of the disabled and caring community in Ireland. The meeting lasted 90 minutes. The agenda is outlined below.
FUSS highlighted the failed rollout of PDS (Progressing Disability Services) and the catastrophic waiting lists our children languish on for years at a time. The Taoiseach agreed that the PDS model had failed but advised that the government were not ‘shirking their responsibility’ and would ‘follow through’ to ensure a functioning system was implemented.
It was acknowledged by both parties that this change will not be swift. FUSS requested that the Taoiseach make a public statement recognizing the failure, cementing their commitment to change and confirming that families are being heard instead of feeling they are shouting into the abyss. The Taoiseach remained neutral on making such a statement.
HSE Accountability and Transparency
FUSS spotlighted statements from IASLT and anonymous clinicians on the clinical risks associated with PDS. Key areas included the lack of governance, accountability, the dismantling of specialist pathways and concerns regarding scope of practice.
Complaints by both clinicians and families fail to receive the urgency they deserve. In many cases brought to FUSS, complaints are left open with no resolution or filed and allegedly ignored. We sought clarification on who the HSE were accountable to for their poor performance. The Taoiseach advised that ultimately the HSE were answerable to their Board (appointed by the Department of Health) and then to the government.
The Taoiseach accepted the ‘culture and institutions’ of the HSE were known to his department. FUSS highlighted several instances brought to us by families who have been allegedly intimidated by a HSE Staff Member following media appearances. FUSS questioned how the Taoiseach’s department planned to tackle the lack of accountability within the HSE. The question was not answered but instead reversed to a FUSS member who is also a former HSE employee.
We brought the issue of referrals being made to TUSLA by both staff and families in instances where HSE and associated bodies cannot provide support. We discussed a statement issued to us anonymously by a TUSLA employee who needed their concern at the volume of referrals received addressed. The Taoiseach was in agreement that this was not a sustainable option and could result in safeguarding issues for other TUSLA cases.
Equipment Provision
FUSS have advocated for A National Aids and Appliances Policy as well as a list of HSE funded and approved items be made available to the public.
We have been informed by Bernard O’ Regan, HSE Disability Operations, that no policy exists but ‘the HSE with its Community Funded Schemes Service is seeking to introduce agreed national standards and operating procedures’. He added ‘ in relation to Aids & Appliances, we have had a national working group in place for the last number of years who have been developing a national list’. FUSS informed the Taoiseach that they attempted to access the minutes of this National Working Group under FOI 2014 legislation but were met with a substantial fee request ‘to search and retrieve’ such records.
The Taoiseach stated that in his view ‘no child should be waiting for equipment’. FUSS identified several cases where children were waiting up to 2 years and others where RAG refused to fund equipment despite being prescribed by clinicians. The Taoiseach declared that he ‘did not see the purpose of RAG groups’ and felt they ‘delayed the process’. He added ‘if an OT signs off, the equipment should be provided’ and that the ‘the budget spent on equipment was a drop in the ocean in the grand scheme of the HSE’s spending’.
He advised that this area was of particular interest to him and he would ‘follow up’ at his next meeting with the HSE. He also requested contact information for the families discussed which FUSS provided following the meeting with families' permission.
Families have come in their droves to FUSS expressing their disbelief that Community Stores, where 2nd hand equipment is stored and then reused, did not seem to be operating as intended. We advised the Taoiseach that this concern was voiced to the HSE and Minister Rabbitte at her Disability Forums prior to the summer break. He agreed to make inquiries.
Recruitment and Retention
FUSS flagged key issues vital to recruitment and retention of PDS staff. These included:
Increasing the salaries of Section 39 workers and extending their pension, maternity leave, sick leave and holiday entitlements in line with their Section 38 colleagues.
Dismantling the widely reported ‘culture’ within the HSE whereby staff feel undervalued and overloaded. Balancing the management:staff ratio is key.
Streamlining HSE recruitment process including use of panels.
Enforcing regulation of Psychology via CORU. This is currently in phase 1. A timeline on completion is needed.
Addressing the lack of clinical supervision available to staff and students attempting to train. IASLT are currently seeking over 300 clinical placements for students to complete their required hours. International recruitment will be futile otherwise especially considering the housing and cost of living crisis.
Collaboration between Disability Sector and Higher Education. We are aware Minister Rabbitte is pursuing this avenue with regards to conversion courses, therapy assistants, volume of college places and drop down qualifications. An update on its progress is imperative.
Enforcing collection and publication of data ,including financial, by HSE and voluntary bodies to ensure transparency and forward planning, thus avoiding unmanageable caseloads going forward.
The Taoiseach did not have any updates to provide regarding Higher Education. He promised to liaise with the relevant Ministers.
With regards to Section 38 and 39 employees, the Taoiseach argued that we were ‘naive’ to suggest this could be done. He added that it would be ‘difficult and cost a considerable amount of money’. FUSS advised of the implications on staff retention and recruitment.
The Taoiseach stated his belief that International recruitment would ‘work and that people would come’. We reiterated our apprehension given the volume of vacancies in CDNTs nationally and the effect that will have on clinical supervision. He would not be drawn into a discussion on the effects of housing or the cost of living on international recruitment.
FUSS requested an update on the Disability Capacity Review (published in July 2021 by DOH) Implementation Plan that was promised in late 2021. No update was given.
Intervention
The greatest failure of PDS must be in the area of intervention. Yet we know that HSE actively hides this from political oversight. Through extensive Freedom of Information requests, Parliamentary Questions and comparison with families lived experiences we know that many of our children have been listed as having received various therapies because a parent or carer has attended webinars, or if they were very lucky their children attended play groups with several other children that had a clinician present. Often these webinars are pre-recorded filled with vague and generic messaging that may not even contain any information relevant to the child in question. Furthermore, as they are pre-recorded there is no way to ask follow-up questions other than emailing an overloaded service to request support.. Yet this is recorded as intervention. Failure to attend often results in parents/carers being deemed as not-cooperating. We put all this to the Taoiseach, and we insisted that what classes as intervention must be clearly defined. The Taoiseach agreed to address this.
Personal Budgets
While it is clear that this crisis is the result of poor management and decades of under-funding this sector we believe that we have reached a point where an entire generation of children are at serious risk due to the lack of services. It will take time to rebuild the public services from the rubble and we simply cannot wait for that.
FUSS emphasized the need to open up access to Personal Budgets as many families who are granted homecare find that they are consistently left without due to a lack of staff. If families had access to Personal Budgets they could recruit and hire staff they need themselves in a similar way to home tuition. The Taoiseach agreed to investigate this.
We have repeatedly asked where the funding allocated to families goes when it is not spent on staffing due to shortages and have received no answers. One such family in Cork has a homecare package amounting to over €30,000 per year for two children and yet nobody can tell us where the allocated money goes when there's no staff to fulfill that role. The Taoiseach could not provide an answer.
Carers
We remain very disappointed with the Government's attitude towards Carers. The means testing of Carers payments is derisory. Not only does it completely undervalue the most important work in society, but it is also an example of the structural sexism that still exists in Ireland today. Given that so often the role of Carer for children with disabilities is taken on by their mothers, means testing this payment against their spouses’ earnings not only tells us how little the state appreciates and values their contribution to our communities, but leaves them utterly dependent and extremely vulnerable.
We highlighted how unsustainable it is for families to attempt to pay for private therapies, equipment and deliver 24/7 care without respite. We reminded the Taoiseach that carers have experienced a cost-of-living crisis for many, many years. While he accepted the existence of the additional cost of disability, circa 13k a year, he claimed the covid payment to be ‘an exception’ that had to be brought in to “protect jobs etc”. FUSS reiterated that €350 was declared the bare minimum to survive in Ireland before inflation took hold. Yet someone caring full time for a child with additional and often complex needs can somehow manage on much less.
We made it perfectly clear to the Taoiseach that this budget must be used to end the cycle of Carers being forced into poverty. While there was some indication that Carers payment rates will be revised, he would not be drawn on and end to means testing.
We did, however, find him favourable to the idea of removing the 18.5-hour limits associated with Carers Allowance, especially when it comes to studying. With the advent of hybrid and online courses, he agreed ‘this seems logical and the system is far too rigid’. The existing rate of €225 along with the rules regarding how it is administered clearly needs urgent and serious revision. FUSS will continue to advocate strongly on this issue.
Additionally, the Taoiseach committed to reviewing the practice of discontinuing DCA if a child is hospitalized for more than 13 weeks and Carers Allowance if more than 6 months. FUSS brought forward the cut off age of DCA at 16 years old being reviewed and raised to 18 years for those in education. The Taoiseach was receptive to considering this.
Loco Parentis Rule
Under the Loco Parentis rule, parents of disabled children are restricted from leaving their own home while a respite nurse is in the home to provide in-home respite. An adult must remain in the home. The Taoiseach did not appear to be aware of this rule and sought explanation from FUSS. He advised that this rule may be ‘a safeguarding issue’ but agreed it seemed inept. He noted he would discuss with the HSE why this was deemed necessary.
Family Forums
Forums were promised under the 2011 plans for PDS as an opportunity for families to express opinions, concerns and experiences of the services with the support of clinical staff. The Taoiseach commented that there ‘has been some progress in the establishment of forums’. He appeared disappointed to learn that in as far as FUSS was aware, Dublin South and Kildare were the only counties so far to receive correspondence concerning Family Fora. FUSS reported that this correspondence was described as a ‘consultation meeting to share information about setting up a Family Forum’ and were not actually Forums yet. The Taoiseach assured us he would address this with HSE at an upcoming meeting.
Return of Therapists to Special Schools
While we campaigned for and welcome the return of a resource that should never have been removed, we feel it would be remiss not to highlight our apprehension.
Minister Rabbitte is quoted as saying the return of therapists would “not deplete CDNTs” yet a leaked HSE Memo stated that the first 44 therapists, approx ⅓ per CHO, would be redeployed directly from already ravaged and under-resourced CDNTs.
Statements by IASLT and Forsa echo our concerns regarding the feasibility of the leaked plans. Additionally, Forsa released a statement declaring that despite HSE’s promise to discuss the plan with members, they have failed to do so. Both statements were handed to the Taoiseach.
SEN Education
What was overall a productive meeting where we managed to convey a long list of grievances with CDNT’s, Primary Care and Education, there was more bad news. In Cork, an additional two school transport providers have dropped out and there is the possibility of more to follow, leaving families in an impossible position. While the Taoiseach assures us that they are working on it, this will not help families that will be simply unable to bring their children to school, often traveling over 45min to attend special schools and classes.
We discussed the SNA freeze which exists in practice by the way SNA hours are being frontloaded. Despite denying any freeze the Taoiseach did accept that for developing schools if SNA allocation remains constant as student numbers grow, these vital supports are unavailable to many pupils. FUSS declared the current Exceptional Review Process operated by7 NCSE has been described as arduous and lengthy and often has negative results. The Taoiseach noted this as an area he would discuss with relevant Ministers.
FUSS raised the issue of ‘Temporary Substitution Arrangements’ introduced in 2021 and ceased to operate this school year 22/23. Since the Department of Education has halted funding substitute teachers for temporary cover, we fear we will see a return to schools being forced to use SEN teachers for temporary cover of absent teachers thereby removing a vital resource from vulnerable pupils. This is an unfair and ableist working practice to both the teacher and pupil and we made it clear to the Taoiseach that this must stop.
On the topic of teacher training, we drew attention to the lack of SEN training at HDip level and the fact that SEN modules are not compulsory when it comes to Continual Professional Development (CPD). This is further exacerbated by the NCSE only approving SEN training modules to the first Special class being opened; no training is provided for teachers in a second or subsequent classes. Furthermore, training is only provided after the class has been opened placing teachers, all too often newly qualified and not yet on a permanent contract in the very difficult position. They are forced to learn on the job both as a teacher and learning how to assist children with needs that are as varied as they are unique whilst also studying.
The Taoiseach categorically confirmed that centers for educating autistic children were ‘off the table’ and not being pursued as an option.Furthermore, he could not provide an update on The EPSEN Act Review or a timeline on when one could be expected.
We in no uncertain terms told the Taoiseach that children with additional needs cannot remain as an after thought by the Department of Education. We further elaborated on this when highlighting the disconnect between the opening of classes for children with additional needs at primary level while not extending this into secondary. The Taoiseach agreed that this ‘made no sense’, he commended the few post-primary schools that are providing these services locally and feels that this is a model that ‘can be replicated in significantly more schools’. The Taoiseach himself identified that education is an area where we can make significant progress quickly. We agree with this sentiment but remain skeptical. If the Taoiseach is genuine about addressing these concerns, we expect to see a renewed pressure to be placed on Ministers Foley and Madigan to deliver.
PDS Roadmap
We discussed the PDS roadmap and highlighted that despite already being on the first draft that key stakeholders have not yet been consulted. Stakeholders such as service users, clinicians, management and parents have no voice in what has the potential to be a landmark document. A properly considered and fully implemented roadmap is the best hope to breathe life into the utter failure that has been the PDS rollout. FUSS insists that these voices must be heard for PDS to be a genuinely person centered care model. The Taoiseach agreed that consultation is a key component to the success of the roadmap but in the absence of family forums this will be difficult. We have requested to be a part of the consultation, to bring user-centered, data driven solutions to the table and see an end to HSE decisions that leave service users and their families hopelessly abandoned, adrift and excluded from society.
Conclusion
As we have watched the entire system collapse around us we have waited for someone to speak on this. We have waited for some acknowledgement beyond replies to journalists saying yes it has had a few issues but it’ll all be fine in time. We truly believe that families feel deeply abandoned by this government, they feel alone and they are hurting immeasurably. We believe the first step to repairing this relationship and working towards progress is for the leader of this country to hold a press conference and speak directly to families. We don't want false promises, we simply want some acknowledgement that we are heard and an apology issued. This crisis is not the result of the actions of one person, one department or one government. However the office of an Taoiseach ultimately must take responsibility for this crisis.
For every problem raised we offered workable, data driven solutions that can help bring about a system that respects and cares for Users, Carers and Staff. No one in Government or Opposition can claim ignorance of the problems or the solutions.
FUSS felt we had an overall constructive meeting with the Taoiseach. There is a colossal amount of work to be done to overhaul the treatment of our disabled and caring communities. We hope to continue to force tangible advancement in conjunction with the Taoiseach and the relevant Ministers.
Further Demonstrations: FUSS will be holding a demonstration at Leinster House, Kildare Street on Wednesday 14th September at 11am. We will also participate in the Cost Of Living Demonstrations in Cork on September 17th and in Dublin on September 24th.
