A FAMILY THAT challenged an intellectual disability charity over its services for their daughter said they have “no faith that the situation will not be repeated with other families”.
It comes as it has emerged that the charity has seen over 5,000 children added to its services over the last two years, while having 115 vacancies across its specialist teams.
The family made a complaint after a practitioner from the charity advised them that their struggles with their daughter – an infant who was suffering regular seizures at the time – could be solved by watching reality television show Nanny 911 for advice.
That visit came following a five-month wait at Enable Ireland’s Cork branch, while their daughter suffered the seizures and displayed other behaviours that concerned her parents.
The charity, Enable Ireland, later apologised to the family.
In its internal report on the complaint, seen by The Journal, Enable Ireland said the child psychologist “acknowledged that her reference to Nanny 911 was upsetting” to the girl’s mother and “she undertook not to make such a reference at any time in the future”.
Regarding the recommendation to watch American reality TV programme Nanny 911, the girl’s mother wrote to the charity that the advice was akin to being told her daughter’s complex needs could be treated by putting her on “a naughty step”.
In her complaint, she wrote: “They seemed to think I had this mad list of demands for services and wild expectations.
I had to remind them my daughter has never received a single appointment with an [occupational therapist or speech and language therapist] or anything like that. We only ever wanted a diagnosis so that she could get support.
The complaint overall was “partially upheld” as other interactions between the family and practitioners during the visit remain disputed.
The family and a campaign group for parents in the area warned that the experience underlines a litany of issues and understaffing within Enable Ireland, which is one of the largest organisations in the intellectual disability sector.
The non-profit told The Journal that it is struggling to meet the needs of its service users.
Its client list has ballooned in recent years, after a re-organisation of Ireland’s disability services resulted in Enable Ireland taking on over 5,000 extra service users.
The family in this case were among those new clients.
The specific Nanny 911 visit arose in August 2021 following the family entering Enable Ireland’s service.
Before the nationwide reconfiguration of services, the family were part of a separate group that worked with children with intellectual disabilities.
Ahead of the 2021 visit, the family said they had exhausted all medical options and hoped the visit from occupational therapists from Enable Ireland would be a step in the right direction.
However the two practitioners who visited their home were a child psychologist and a social worker, which parents contended was not made clear at the time.
“[T]he review panelists acknowledge the home visit and a significant number of perceived comments during the visit caused distress and upset to the complainant, resulted in [the woman] submitting a formal complaint,” Enable Ireland said in its response to the partially upheld complaint.
“Notwithstanding the view of the two clinicians that their behaviour was at all times professional, the panelists acknowledge that this was not the perception of the complainant.”
It added: “Following completion of the internal review, the investigators have no reason to question [the child psychologist’s] clinical competence, though she herself acknowledged that her reference to Nanny 911 was poorly chosen on the day in question.”
It noted that in future, its staff would need to be mindful of how their comments may be interpreted by families, adding that it has provided feedback to this effect to staff.
‘Most significant change in disability services‘
Following their complaint over the incident, which took place in August 2021, the child was moved to a different multi-disciplinary team.
This was an action the parents alleged felt “like a punishment” and claimed it “put us at the back of the waiting list”, which the charity has stressed was not the case.
“We were told it would not but the reality is that all these teams have to process files as they come in,” the girl’s mother said.
The family left the charity last year after a standoff over what happened could not be resolved, with Enable Ireland telling the family that it was “genuinely sorry that we have not been able to meet your needs”.
The failures of the Progressing Disabilities policy have previously been covered by this publication’s sister site Noteworthy.
In its own correspondence with the family, one director of services said the policy is “the most significant change which has ever taken place in disability services”.
Enable Ireland is the lead agency for 20 Children’s Disability Network teams, of which there are 91 teams in total across the country.
When contacted, it noted the large caseload numbers and significant numbers of new referrals against a backdrop of limited resources.
It outlined that:
“We believe that a significant investment in all children’s disability network teams is needed,” a spokesperson said, pointing to a Department of Health report published in 2021, which outlined an investment of €48m needed for adult and child therapy services.
“Our experience of (Progressing Disability Services) to date is that we see significant unmet need requiring additional therapy and clinical resources to address the increased caseloads and reduce the waiting lists.”
A campaign group advocating for parents in the area said the case sheds light on the challenges parents face and the understaffing across child disability services.
Families United for Support and Services, also known as Fuss, said it can be a “constant fight for families to get transparency” when navigating the sector.
“The reconfiguration of services under Progressing Disabilities had the effect of families seeing it go from bad to worse. We’re in contact with families who are waiting two to four years to be seen and this should never have happened,” Rachel Martin, a spokesperson for Fuss, said.
“We do think this case shows a big fear for families where they feel they risk being punished if they raise concerns about their child’s treatment.”
Martin said it was clear that staffing was at “crisis point” and that the group has found itself being contacted more and more by “therapists and other staff who are stressed and burnt out”.
In its response to The Journal, Enable Ireland said it encourages and welcomes feedback from parents and all such feedback is considered as part of its ongoing efforts to improve the service.
“A parent who wishes to provide critical feedback or submit a complaint may do so without fear of penalisation. Enable Ireland does not and would never penalise a service user or parent in such circumstances
“Enable Ireland does not engage publicly regarding individual service users, families or staff matters.”
On staffing, it said an immediate decision is needed from the government to address pay parity to Section 38 agencies (agencies funded to provide services on behalf of the HSE) to “enable an equal playing field in the recruitment crisis”, adding that it “cannot compete with S.38 agencies and HSE salary scales provided for exactly the same work”.
It added: “We are doing everything we can to address our waiting lists in creative ways and through recruitment.
“For example, families may be offered an appointment for some support in one area of need but may have to be placed on a waiting list for another need.
“We acknowledge that it is very difficult for any family of a child waiting for services and we are doing everything we can to address waiting list times in our service and to see child as soon as possible.”
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