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May 6th Protest


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For Immediate Release 

Families demand urgent action to address crisis within Children's Disability Services

FUSS (Families Unite for Services and Support) is organising a National day of action on Friday, May 6th 2022 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 Leinster House , D2.

                 Cork, Grand Parade 

                 Wexford, Enniscorthy Town Square

Time: 10am 

The failed role out of Progressing Disability Services (PDS) has had a catastrophic impact on our children at a time when they needed stability and support more than ever before. 

Over 100,00 children languish on wait lists across the country yet PDS received €3.5m in 2021, a mere 6% of the €2.2bn allocated to Disability (HSE Service Plan ,2021) despite the OCO's Unmet Need Report ,2020.  

Everyday we watch our children regress. We watch them miss out on school places. They sit in pain in equipment that is too small or unsuitable. We watch them disappear from their communities and their families waiting 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 with that number rising to a staggering 95% when it came to Psychological support services. 

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.

A High Court Ruling in March 2022 deemed the Standard Operating Practice applied to Assessment of Need beginning January 2020 non compliant with The Disability Act 2005. Ms Justice Phelan stated the consequence of the failure to properly define the statutory parameters of the extensive, gold standard, assessment required under the 2005 Act undermines the ability of the respondent to itself plan for service provision. This has led to a 10,000 child backlog in and of itself within a system which had already seen families filling legal complaints across the country on a weekly basis. 

Furthermore, the Disability Capacity Review to 2032 (March 2022) used data from 2017 to plan for future disability services while assuming "current disability prevalence will remain constant"(pg 14) contradicting Census 2016 which recorded a 6% increase in prevalence of childhood disability.

 We call on the government to immediately begin outsourcing assessments to the private facilities to tackle waitlists. 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 Rabitte 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 within their communities. 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 and realistic recruitment and retention plan which appraises the lack of accountability within the HSE.

 HSE CEO Mr Paul Reid acknowledged at a Children's Committee Meeting on March 22nd 2022 that none of the 91 CDNTs (Children's Disability Network Teams) were operating with full staff ratios. Bernard O Regan, Head of Disability, went on to say that the average team were 50-70% full but that no data was available at that time.Through consultations with various TDs and CDNT Managers, we have accessed data relating to several CDNTs. For Example, CHO8 comprising Meath, Westmeath, Louth, Longford, Laois and Offaly has 20.76 WTE vacancies. Moreover, a single team in Dublin CHO7 reported 11 vacancies.

 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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