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JUNE Press Release Email: DUBLIN: Rachel CORK: Rebecca Facebook @FUSS Ireland Instagram @fussireland Twitter @fussireland For Immediate Release

Families demand urgent action to address crisis within Children's Disability Services FUSS (Families Unite for Services and Support) has decided to escalate our campaign and as a result is organising a 2nd Day of Action on Saturday 11th June with demonstrations set to take place across the country. The event is supported by Inclusion Ireland, Family Carers Ireland, Opposition TDs and Seanad Members Tom Clonan and Mary Seery Kearney. Locations: Dublin GPO O’Connell Street Cork, Grand Parade When: Saturday June 11th at 2pm Since our May 6th Day of Action, many facts have come to light that further emphasise the failed roll out of Progressing Disability Services (PDS) and the catastrophic impact on our children. Over 100,00 children languish on wait lists across the country including 7,200 children awaiting psychology review and over 13,450 on primary care SLT lists. Let’s not forget the “autism centres” saga, an “interim” proposal floated by the Department of Education to tackle lack of SEN school places. Such a proposal reeks of segregation and inequality. We continue to watch helplessly as our children regress. We look on as they are denied school places unlike their neighbours and friends. They sit in pain in equipment that is too small or unsuitable for their needs. They are slowly disappearing from their communities while their families wait for a lifeline that we are consistently told is coming. A Report by Inclusion Ireland entitled "Progressing Disability Services for Children and Young People: Parent Experience Survey 2022" found that 85% reported a wait of 1 year or more for access to disability services. This is echoed by Down Syndrome Ireland's "Lack of Services Report 2022" which found that an average of 44% of children in all CHOs (Community Health Organisations) had no therapy of any kind in the previous 12 months. Furthermore, in response to a Parliamentary question by Sinn Fein, it was confirmed that an average of 28% WTE positions are vacant in CDNTs (Children’s Disability Network Teams) across the country. Under-resourced teams are attempting to manage large caseloads. For example: North Tipperary (CHO3, CDNT1) are drowning in a caseload of 1418 children to 21.3 WTE staff compounded by their 38% staff vacancy rate. We have seen no meaningful change since May 6th and so our demands remain unchanged. We demand urgent action on the following key issues: 1) Immediate outsourcing of assessments to tackle AON waitlists 2) Address the issue of access to Personalised Budgets for Respite Care 3) A timeframe for the return of all therapists (redeployed during PDS roll out) to Special Schools 4) A commitment to end the practice of families requiring personal loans for vital equipment that they are entitled to under GMS 5) An actionable and fully costed Workforce Planning Strategy to tackle chronic difficulties across the sector in recruitment and retention of staff 6) A timeline for the implementation of Parent Forums promised under the 2011 plan for PDS 7) An update on the UNCRPD Optional Protocol and its ratification in Ireland. We call on the government to immediately begin outsourcing assessments to private facilities to tackle waitlists especially considering the additional 10,000 that require review following March’s High Court Ruling. A failure to do so will result in a tidal wave of litigation against the state which will cost them 3 times as much to defend as it would to simply provide these children with the assessments they need. We demand the immediate return of all therapists (redeployed during PDS roll out) to Special Schools as this would have a prompt and extensive impact on thousands of families across the country. HSE figures provided to Anne Rabbitte ahead of her meeting with families in Cork last month suggests this has already begun but families have yet to see any evidence of the accuracy of such statements. We demand action for families of children and young adults with complex needs facing difficulties in accessing vital equipment and respite. We do not believe there is any possible justification for families needing to create fundraisers or take out loans for equipment that their children need to simply exist comfortably and safely. Nor do we find it acceptable that many wait as long as 12 months to receive equipment which then proves to be unsuitable due to a child’s growth. We call on the government to evaluate funding and access issues for vital equipment and address difficulties families face in ascertaining personal budgets for respite. We call on the government to ask themselves why staff are leaving in droves? Why they do not have a single fully staffed Children's Network Disability Team across the entire country when business is positively booming in the private sector? We need a costed, realistic recruitment and retention plan which appraises the lack of accountability within the HSE. We ask that HSE conduct exit interviews with their staff and address areas of concern. It is clear that services have been in crisis for a very long time but without the urgent implementation of Parent Forums outlined in key documents as far back as 2011 things will only continue to decline. The HSE patchwork the system and scratch their head in confusion while we sit here with the experience that only comes from attempting to navigate this system from start to finish, ready and begging for change. We will not allow our children to disappear from their communities, we will not allow our children to become invisible, it is time to make a fuss.

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