With three children on the autistic spectrum, Mary and Michael Dunne would rather not have to spend so much time and energy battling officialdom, writes Noel Baker
MARY DUNNE once spent a time working in Blarney. When asked if she kissed the stone, she responds instantly. “I feckin swallowed it.”
She certainly has a way with words, but as she sits in her kitchen in Abbeyleix in Co Laois, she admits that she is a reluctant interviewee. She simply feels that at this stage, she may as well tell her side of the story.
The house on the fringes of Abbeyleix is a typical family home: trampoline in the back garden, Star Wars magnets on the fridge, toys in the hallway. The lives of the three children — 14-year-old identical twins Katie and Aoife, and their 11-year-old brother, Adam — are for the most part entirely ‘normal’, but all three children are on the autistic spectrum and, as many families will tell you, the unending search for services can grind you down.
Take the twins. When they were aged seven, they were assessed within months of each other, but while the family was granted the monthly Domiciliary Care Allowance (DCA) in respect of Aoife first time out, by the time the Dunnes applied for Katie, the assessment process had passed from the HSE to the Department of Social Protection, who turned it turned down. The family appealed the decision regarding Katie’s case and were awarded DCA.
Mary praises both the girls’ secondary school in Mountrath and Adam’s mainstream primary school, declaring that the family has been lucky with the educational choices. In most ways the girls are typical, dynamic teenagers, but when difficulties arise it is because of anxiety. “Summer tests,” she muses. “The anxiety has been through the roof. People don’t realise what they go through every day just to function in school and do what they have to do. When they come home it is almost impossible to get them out of the house - they have had enough social interaction. They have made a couple of friends in school, which is brilliant. The kids just know without being told. They are doing good.”
Adam has a winning smile and a happy bearing. Speaking with him, it’s obvious he is articulate, intelligent, and someone full of potential. “He’s a good-natured child,” Mary says. “He is charismatic. The kids and teachers love him. He can be a bit anxious. There are things that he wants to be able to do that he can’t do, but he tries.”
She offers an example: three weeks ago Adam went on a fun run and came in afterwards and told his mother, “Jeez, I was dirt last.” It turned out that everyone else had finished and he still had a lap to do, but he didn’t want to disappoint his sponsors and with his classmates cheering and willing him on, he made it.
The family love their home in Abbeyleix, but Laois has been rough terrain in some ways. Mary is a Dub and she and her husband Michael, from Co Kildare, moved here almost a decade ago. Even then Mary recalls a friend of hers referring to the county as a “black hole” for some services like those required by children with autism.
Adam’s main issue is food aversion; they can’t get the food into him, whereas the girls are foodies. “He eats like a bird,” Mary says. “He has a tiny appetite. The reason I have fought for so long is that we need help with this.”
They only discovered recently that he has no sense of smell, adversely affecting one approach whereby he could feel a food with his hands and then associate a taste with it. Michael laughs when he recalls how Adam once told someone that he eats peas. “He ate one pea, once!”
The first thing they noticed was when Adam had a speech delay and was referred to Laois Early Intervention Team in June 2009 with suspected Autism. The family were told during a home visit in July of that year by a public health nurse that due to a waiting list it was not possible to predict when he would be seen. Since he was due to start in playschool in September the family applied for an Assessment of Need in August.
So began a long and torturous road that has led to Mary and Michael as the reluctant interviewees, sitting in their kitchen and detailing what they see as an interminable struggle to get what they want for their son.
Adam had an initial screening in October 2009 by the Early Intervention Team and was discharged from occupational therapy, instantly raising concerns which the family expressed to those in charge. Adam’s Assessment of Need got underway that November but was not completed until the following May due to a delay in the psychology element. Already at that stage, the Dunnes were alarmed when in February 2010 they received a copy of the initial Early Assessment Team screening from the previous year, which they felt was “wholly inaccurate”, prompting Mary and Michael to write a letter to the Early Intervention team, before somewhat circuitously being referred to a disability services manager, who said the family could forward her an official complaint. The family claim this complaint was lodged and has never been fully resolved.
In July 2010 the family made a complaint to the HSE in relation to the psychology element of Adam’s Assessment of Need, which had resulted in him being identified as not being on the spectrum and with no needs identified.
Since Adam did not have a diagnosis of autism when he started primary school in September 2010, he could not get a place in the mainstream school’s ASD unit. Mary says that with no supports and in a class of almost 30 children, Adam didn’t cope very well and stopped eating adequately, dropping from the 25th centile as regards weight to the fifth centile, suffering repeat infections and missing school as a result.
A meeting that October with the HSE regarding the possibility of a further assessment and home programmes for the three children while they awaited services came to naught and the following month, in early November, the HSE complaints officer reported back on the complaint lodged in July, upholding it and recommending that Adam’s psychology needs be reassessed no later than November 28 of that year. Yet later that month the family were told the complaint officers report was being withdrawn, as per the instruction of the line manager, effectively reinstating the position whereby Adam did not require a re-assessment.
The clock was ticking and feeling they had no other option, in January 2011 the family had Adam assessed privately by a senior HSE psychologist, who found Adam was autistic. There followed further wrangling with the HSE stating the private assessment could not be included in Adam’s Assessment of Need as it had not been commissioned by them, while a review of the initial complaint resulted in it not being upheld (again).
The family then appealed the findings of that decision to the Office of the Disability Appeals Officer. That report, issued in late 2011, found that as a result of a number of failures, an inadequate assessment report had been prepared in respect of Adam. It found that the request by the line manager that the initial report upholding the family’s complaint was in potential breach of the act guaranteeing the independence of assessment officers and complaints officers.
THE report also identified a potential conflict of interest, given that one person was both an independent assessor of Adam’s needs and a member of the Early Intervention team, meaning they were in “a very difficult position” as she was conducting an assessment while also seeking to address aspects of a complaint made by the Dunne’s regarding their colleagues. She went on: “It follows from my above findings that [Adam] has been deprived of an Assessment of Need carried out in accordance with the HIQA standards.”
Referring to the private assessment secured by the Dunnes, the disability appeals officer said it found Adam met the criteria for autism and that this explained his “many sensory needs, his unusual development of speech, his lack of assertiveness in social situations, his lack of understanding others’ emotions and his passivity with regards learning new independent skills”. She recommended that Adam’s needs be adequately addressed and concluded the 57-page report that the complaint was “well founded”, that Adam’s assessment report be amended and that his Service Statement be reviewed by mid-February the following year.
By the end of January 2012 the Dunnes were informed that the disability appeals officer had resigned her position and that the Office of the Disability Appeals Officer had been closed, and an acting DAO had been appointed from the Department of Health. The initial report was to be amended.
There was what Mary describes as a “difficult” meeting with the HSE in Tullamore that February and by May the family had applied to the High Court for a judicial review to have the original DAO report reinstated. By June the acting DAO said he was withdrawing the amended version and reinstating the initial report.
Still with us? More meetings followed, with the family querying why the recommendations made in the DAO report had not been implemented. All the while there were growing issues with Adam’s eating, with weight loss, impacted bowels and difficulties in getting him to eat. Adam was finally seen by an occupational therapist in November 2011 as part of the Assessment of Need review. Mary says he received two 10 minute food play sessions and in the four years since his initial referral he received one block of six one-hour sessions of therapy. She also claims he has not been invited to attend several food groups conducted in the area since her first referral.
The waiting for services continued and in May last year, LOFFA (Laois Offaly Families For Autism) issued its own report into the current state of HSE autism services in the two counties. The group, which has existed for 16 years, had more than 380 member families at the time of the publication of that report — the Dunnes were among them. The report’s findings, which were widely reported, included claims that services in the area had deteriorated to crisis levels, with more people seeking help in securing basic assessments.
It also found none of the assessment of needs carried out in Laois/Offaly in 2014 were compliant with the timeframes set out in the Disability Act 2005, while the therapist/child ratio in Laois/Offaly ranked 25 out of 27 local health offices nationally. It mentioned an “unacceptable waiting time for the provision of speech and language therapy, occupational therapy and psychology” as well as “discrepancies between privately sought assessments and HSE assessments”. The report said there were significantly more children waiting for services in Laois/Offaly than anywhere else in Dublin Mid Leinster. It also included this line: “Parents report a genuine fear of complaining for fear there may be retaliatory action against them such as losing any small amount of service they may be receiving.”
That is the potted version of the Dunne’s travails. The stack of files on the kitchen worktop is more than a foot in height. “That’s not even all of it,” Michael says. “The postage alone would have gave him a private consultation,” Mary adds.
There is one file of particular interest, however — the file they never knew existed. Marked ‘Confidential’, it certainly fitted the description, given the Dunnes never knew about it. It seems that in late 2012 some people within the HSE believed there was a child welfare concern surrounding Adam, a welfare concern never articulated to the family and one dropped just months later. The only reason they ever found out about it was when it arrived as part of a Freedom of Information request last April.
The file contains a letter of November 1 in 2012 from within HSE disability services to the social work department regarding a meeting of professionals to gather “collective feedback” on Adam’s care. It states: “Initially, it was agreed that representation from Child and Family Services would attend this meeting” but during the intervening period a consultant paediatrician had phoned a GP involved in Adam’s care to discuss his medical needs and then phoned disability services to say that a Child and Families presence at the meeting “could be counter-productive” and so it was deferred.
Then in the next paragraph: “However, at this juncture, given the complexities involved we would welcome your involvement and advice of how best to provide a coordinated approach [redacted] incorporating all relevant personal [sic] to ensure that [redacted] are provided with appropriate supports.”
Yet, by the following February, the social work department sent a letter to disability services outlining how a number of professionals involved had no welfare concerns whatsoever, often noting that Mary simply seemed stressed and anxious about services for Adam. It is clear from the tenor of the letter that social work are not at all sure what they are meant to be investigating.
The family are now seeking the file to be corrected, particularly as a High Court order found that Adam did indeed need the services the family were seeking, and also and primarily because the file was closed within a matter of months. As of late June 2013, the social work department was happy to close the case. It said a member of HSE disability services had requested their attendance at a multi-disciplinary meeting the previous October regarding Adam “to discuss possible child welfare/child protection concerns” in respect of the boy, and that social work and social work team leader attended the meeting and “professionals were asked to advise parent [redacted] of [redacted] child welfare/protection concerns and then clearly outline their concerns in writing to the SWD”.
The next paragraph outlines how the very person in the disability services who first raised the child welfare concern then advised the social work department that the multidisciplinary team “do not wish to make a formal referral; to HSE as they have no child protection and/or welfare concerns.”
Earlier in 2013, correspondence contained in the file, from a social worker stated how “parent should be advised of same [referral] unless very good reason why this should not take place and child protection and/or welfare concerns need to be clearly outlined be [sic] professionals involved”. For the record, Mary states that the family had no knowledge of any meeting involving social workers taking place or their attendance at it.
Another page in the file is, in retrospect, almost humorous. Marked ‘Record of Supervision’, it states that intervention to date comprises of “referral from HSE disability services expressing concerns that Mary Dunne presents with sustained request for further assessment, investigation and treatment for her son Adam Dunne”.
That, it would now seem, was the trigger for a child welfare concern being raised. A mother with a son on the autistic spectrum unhappy with the services being provided to him, demanding more.
Mary now readily admits she was stressed, adding: “Wouldn’t you be?” The family are smarting at the very suggestion that there was ever any need for anyone to worry about their son’s welfare — that is what they have been doing as his parents for years. Another file, received more recently by the family and dating back to 2010, sent to disability services by another HSE social work team member, states that: “It will be best for the children’s sake and for the family as a whole if all sectors meet their responsibilities, including services for persons with disabilities, adult mental health and child welfare.”
IT WAS just May 19 this year when LOFFA held a protest in relation to HSE services in the area. Following that, Mary gave an interview in which she referenced the family’s experience of having received the initial child welfare file in April this year involving the family through Freedom of Information, having previously having no knowledge the file existed.
Tusla had responded to the local radio interview, but stated that “we would always communicate and work with parents whose children have been referred and a case file opened”. Except, obviously, in this case. Michael wrote a letter to Tusla stressing that the Child and Family Agency had “at no stage” made any contact with the family, nor had it worked with them “following the allegation made by HSE disability services”.
“I acknowledge that it appears Tusla requested that HSE verify if we had been informed of this allegation and advised them that we should be informed, however, nobody informed us at any stage that an allegation had been made, a file opened and subsequently closed almost nine months later,” Michael wrote.
Then he asked the questions: why, since the HSE did not inform the family that an allegation been made, did Tusla not inform the family? Why was the family not allowed the opportunity to respond to the “erroneous accusations made”? And why did Tusla release its statement regarding ‘working with the family’ when in this instance it had not?
As Mary points out about the contents of the file: “If you read it you would think I was a lone parent. Michael isn’t mentioned at all.”
Tusla moved quickly to respond, setting up a meeting at the start of this month with the family and, it appears, issuing an apology.
In a follow-up letter, dated June 2 and issued to the family by Tusla the day after the meeting, it confirms the apology. A complaints officer based in Tusla’s Longford office writes: “I would like again to apologise on behalf of Tusla that you were not advised by Tusla that the Social Work Department had been invited to attend a professionals meeting in relation to your family and that a file was opened on your family.
“As agreed yesterday [at the meeting] as a learning out of your complaint the Social Work Department must establish with any agency who invites them to attend a professionals meeting that the family to whom the meeting pertains is fully aware that the Social Work Department has been invited to attend and in what capacity. If confirmation is not provided by the external agency the Social Work Department must then inform the family themselves of them being requested to attend a meeting and in what capacity.”
The writer then advises the Dunnes that they are entitled to have Tusla’s recommendations arising out of the case reviewed by the National Quality Assurance Office or that they can refer a complaint to the Office of the Ombudsman for Children.
In response to questions from the Irish Examiner about the case, Tusla stated: “Since the establishment of Tusla in 2014 dedicated duty/intake social work assessment teams now screen all referrals related to child protection and welfare. They will also establish as to whether the person making the referral has informed the family. If a referral is accepted in accordance with Tusla’s threshold criteria by the duty/intake team, Tusla will then make contact with the family.
“When a referral does not meet the threshold for service they inform the organisation or individual who made the referral of this outcome.”
Understandably, it is still a mystery to the Dunnes, and an experience which leaves a lingering sense of disquiet and mistrust. Yet having got this far, they are not about to give up.
“We are actually looking for an independent inquiry into what has happened in Adam’s case,” Mary says. She has spoken in the past to former Minister with Responsibility for Mental Health Kathleen Lynch and she emailed the new Minister for Health, Simon Harris. The time wasted is what haunts them. “I want and I am asking the minister to get an independent body to look at what happened in Adam’s case.
“It’s obvious at this stage that Adam is not going to get a fair crack of the whip locally so I am looking for individualised budgets.”
This might allow the family to travel elsewhere to access services, ideally the UK, where the family believe they can access a specific service unavailable to Adam in Ireland. Individualised budgets for health have been mooted over the years for people with a disability, but Mary believes it might allow people to evade the so-called ‘postcode lottery’ of whether certain services are readily available in an area, or not.
In response to specific queries regarding the Dunnes case, the HSE said it does not discuss individual cases.
However, the HSE did outline some of the difficulties it has faced regarding recruitment in the Midlands. A national study in 2014 found that Laois/Offaly had one of the lowest levels of therapeutic resources per head of population.
A spokesperson said: “As part of 2015 developments the HSE Midlands (Laois/Offaly) was allocated 20 new posts, four of which were psychology posts. The psychology posts were subsequently advertised in 2015. However, no expressions of interest were received. I can confirm that in April 2016 local management requested the National Recruitment Service (NRS) to re-advertise these posts.
However, the expectation is that these will not be filled as interviews are held once a year and, therefore, no new candidates will have joined the interview panels since these posts were last advertised. It is envisaged however, that there will be a new staff grade competition in September 2016 (once a national review of HSE eligibility criteria is complete).
“It should be noted that locally the HSE Midlands area has tried unsuccessfully to recruit psychologists via an employment agency to date. However, we are continuing to explore this option. We have recently identified limited private psychology and have contracted out some of our core disability psychology work on a temporary basis pending the filling of our psychology vacant posts.”
The HSE said that of the remaining 16 posts allocated last year, all were filled, including six speech and language therapists. It also said that in an effort to address the deficits in psychology and therapy service, Irish Autism Action were commissioned to carry out a number of assessments in December 2015 for children but, to date, they were unable to meet their expectations in carrying out these assessments, while agency staff were also engaged as well as private psychology services.
AS FOR any allegations of “retaliatory action” against people who make complaints, the HSE said it had a complaints policy in place that all staff working within the HSE has a responsibility to follow, while disability services have a complaints officer in place where all complaints are actively acted upon once received.
“In addition,” the spokesperson said, “the chief officer and senior HSE staff have met with and had follow up telephone conversations with concerned parents and have reiterated the HSE policy and appropriate follow up to alleviate any concerns.”
The HSE said it was currently piloting two alternative funding models that support a more individualised approach to funding services and each is being evaluated prior to further expansion of the service.
It also said there are two HSE disability service psychologists who work with children aged 0-18 in the area, and seven vacancies for HSE disability service posts, one of which was a new 2014 (Social Care) National Service Plan post and four of which were new 2015 (Social Care) National Service Plan posts. It has lost three staff in these positions in the past 18 months.
More waiting lists
The summer holidays are here and there will be plenty of activities for the Dunne children in the coming months, as well as a few challenges. Mary points to “another problem” that has popped up regarding her girls, an issue with joint pain that has meant a referral to the genetics department to Our Lady’s Hospital in Crumlin.
“The girls were referred in January but apparently there is a two-year waiting list,” she says.
As for Adam, there is a query over a possible diagnosis of Ehlers-Danlos syndrome, a group of disorders that can affect the connective tissues that support the skin, bones and blood vessels. Regarding Adam, Mary says: “He isn’t in pain. If he has had a long day he will complain but the girls will complain all the time. They had to give up judo.”
She talks about her perception of parts of the HSE in the area “circling the wagons”, of the person making the complaint or seeking the services being viewed as the problem.
“They want me to go away at this stage,” she claims. “This is not about me, this is about Adam.”
She says that at this juncture, all the unresolved complaints would not matter so much if they managed to secure what they need for their son. “That’s all we ever wanted.”
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