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August Press Release

Contact: Rachel Martin or Rebecca O'Riordan

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 3rd Day of Action on Saturday 20th August with demonstration set to take place.


Location: Cork, Grand Parade 

When:  Saturday August 20th @ 2pm

Since our 2nd Day of Action on June 11th, 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. Additionally, the recent news that the H.S.E has invested €38m since 2017 on fees associated with Trainee Clinical Psychologists but failed to recruit a single newly qualified Psychologist during the same period. 

On July 27th, FUSS met with Minister Roderic O’Gorman to report ongoing issues, seek clarity via practical questions and provide workable solutions. Minister O’Gorman advised that “for once, money is not the issue”.  However, the “Transforming Lives- Report on Future Needs for Disability Services” highlighted the need for €16-21m to be invested on Children’s Therapy Services by 2020. Yet, the H.S.E Service Plan of 2021 allocated a meagre €3.5m to PDS. Furthermore, The Disability Capacity Review Action Plan remains unpublished despite assurances from the relevant Ministers. So we ask, if “money is not the issue” what is? A question which remains unanswered. 

Minister Rabbitte and Children’s Disability Services were due to move from the Department of Health to Minister O’Gorman in Children, Equality, Disability, Integration and Youth on August 1st 2022, a fact confirmed by the Minister on July 27th. Yet, on August 2nd an interview with Minister Rabbitte appeared stating the move had been blocked by Robert Watt. One would ask, who is in charge? The H.S.E or the government? It is safe to say, parents, carers and the disabled community have lost all faith that their voices are being heard. 

We have chosen to highlight Cork for the following reasons:

1)  Minister Rabbitte, following her Disability Forum in Cork in April promised families that therapists would be returned to Special Schools in 2 months. Minister O’Gorman on July 27th stated he could not guarantee therapists would be in place by September 2022. To date, there has been no progress on their return.

2) Taoiseach Micheal Martin was handed a letter by his constituents on June 15th 2022 detailing their concerns around access to therapeutic intervention, respite and vital equipment. He has not responded nor has he contacted a single constituent. His office has also denied FUSS requests to meet him to tackle this crisis.

3)Carrigline Special School has no therapists in place. Furthermore, due to their patronage, the families have no referral pathway to access Home Supports or Respite. They feel they’ve been abandoned and ignored. A new Special School is due to open in Rochestown in 2023 under the same patronage. This will exacerbate the issues families are already experiencing. A referral pathway is required immediately.

4)The Aids and Appliances Policy for Cork/Kerry is ambiguous at best. The H.S.E have ignored our request for A National Policy on Equipment Provision. Minister Rabbitte has questioned the existence of said Policy on our behalf but her queries remain unanswered.

5)Minister O’Gorman advised on July 27th that “money is not the issue” yet families in Cork face waitlists of 2 years to acquire equipment such as wheelchairs, seats and bath supports. Families have approached the suppliers used by the H.S.E and self-funded such equipment with delivery dates of 4-6 weeks. If money is not the issue, why must they wait so long to secure their independence, safety and dignity?

6)  Families in Cork have been unable to access Respite due to staff shortages despite available funding. Per policy, PDS is underpinned by Person Centred Care and “the money following the person”. Once again, Minister O’Gorman could not confirm where unspent money allocated to Respite went and why families could not obtain Personalised Budgets to secure care independently.

 We have seen countless reports and documents emphasize the issues we are facing today as far back as 2010. Family Fora were trialled in Mayo in 2011, yet, this week, the H.S.E is holding workshops to discuss the format they should take.

Recruitment and Retention issues within PDS have been in the spotlight since March 2022 and still the H.S.E have not published a Workforce Planning Strategy. Minister O’Gorman confirmed this was due mid-September but bizarrely will not address retention.

Six months is not a crisis response. Our families do not have time to waste. 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.

 We demand urgent action on the following key issues: 

1) Address the issue of access to Personalised Budgets for Respite Care 

2) A timeframe for the return of all therapists (redeployed during PDS roll out) to Special Schools

3) A commitment to end the practice of families requiring personal loans for vital equipment that they are entitled to under GMS

4) An actionable and fully costed Workforce Planning Strategy to tackle chronic difficulties across the sector in recruitment and retention of staff

5) A timeline for the implementation of Parent Forums promised under the 2011 plan for PDS 

6) A timeframe on the ratification of the UNCRPD Optional Protocol  

We call on the government to ask themselves why staff are leaving in droves? Why do they 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 review of PDS which appraises the lack of accountability within the H.S.E. We ask that H.S.E conduct exit interviews with their staff and address areas of concern. The H.S.E 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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Edwina McElhinney
Edwina McElhinney
Aug 19, 2022

Will we send it to TDs/papers etc?

Aug 19, 2022
Replying to

It went out on Wednesday to all but feel free to circulate

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