Work ongoing to agree terms of reference for parental capacity assessment of parents of very sick child with extensive care needs- 2022vol2#38

The judge adjourned a case where the Child and Family Agency (CFA) said that it would work collaboratively with the parents of a very sick child in order to agree terms of reference for a parental capacity assessment. The judge emphasised that this was not a case in which the parents’ capacity to care for their son under normal circumstances was in question, but that their son’s illness was such that any parent would struggle to provide their son with the required care in the circumstances.

The matter was before the judge for a review of a supervision order in respect of the sick child.

A representative for the CFA told the court that sadly there had not been a lot of improvement in this child’s circumstances and that, in some respects, the situation had deteriorated. She said that the young boy was incredibly sick and was possibly even sicker than before. The boy’s mother had told her that, at that time, he was not responding to his medication but that she was hoping to increase the medication. The mother told her that her son had difficulties swallowing his pain medication.

The CFA lawyer confirmed that the boy’s mother has always allowed the social workers’ visit and that she felt that she was doing all she could for her son. The representative said that the boy’s mother had read all of the reports in respect of her son and is distressed herself. She added that the boy’s mother was not sure what outcome the CFA wanted from these proceedings or what more she could do.

However, in response to this last point the judge said that the boy was within the court’s purview now and therefore it was entitled to consider him.

The lawyer told the court that the guardian ad litem (GAL) had previously not been able to meet with the young boy but a meeting had now taken place. She said the GAL was present in court and he was willing and keen to give evidence.

The judge invited the GAL to give his assessment, to set the scene and to provide an update on the boy’s situation.

The GAL told the court that the young boy was very sick and was living with a lifelong illness. He said that he had met with the boy at his home approximately one month before. The visit with the boy had been very positive. The boy spoke to him about having received an injection that had reduced the number of cramps that he experienced during the day, but that the cramps were more severe. The young boy told the GAL that he wanted to go back to school and to meet with his mates but that he was still symptomatic.

The GAL said that he did not manage to meet with the boy on two subsequent occasions. On the first of those occasions, he was told that the boy had been up all night. The GAL said that he had met with his mother, but that the boy had not come down to meet him. On the second occasion, the GAL met with the boy’s father; he was told that the boy was in bed.

The GAL said that the boy’s parents were committed to his treatment but he felt that some basic parenting issues were not in place. He said that the parenting issues related particularly to the boy’s routines around education, eating meals, going to bed and so on. He said that it was important to fit in some activities around the boy’s symptoms. The GAL stated that the boy’s medical practitioners all agreed that he could and should attend school. He also said that there were plans in place to facilitate home schooling. However, the GAL said that he thought it was easier for the boy to withdraw from such activities and that this was how he tried to control his situation.

The parents told the GAL that the boy was not going outside or leaving his bedroom. He added that parents reported to him that the boy would stay in his room for hours or that he would and that he would be on his smart phone. The boy was staying in his bedroom all the time, asleep in afternoon but awake all night.

The GAL told the court that the parents needed to use small techniques to encourage their son to engage with the outside world. He said that the parents needed to take a more proactive approach to their parenting so that they could take more control of their son’s life and could encourage him to be more outgoing.

The judge asked the GAL if it was his opinion that the boy’s parents were doing everything they could but that they needed more support to help their son get out of his current situation. The GAL responded that he thought that a parenting capacity assessment was required. He said that he thought the parents needed to take more control of the situation and that it would be very damaging for the young boy to continue to live as he was doing.

The solicitor representing the CFA confirmed to the judge that a parenting capacity assessment was a psychological assessment and that there was no other type of parenting capacity assessment.

Following a consultation between the boy’s mother and her legal representative, it was agreed that the solicitor for the CFA could hand up to the judge a letter that had been sent to the boy’s parents from a consultant psychologist who had been engaged by the CFA to conduct such an assessment. The letter referred to a self-assessment questionnaire. The barrister representing the boy’s mother informed the court that she had received the questionnaire and that she intended to fill it out but that it had arrived at a time when she had had a death in the family.

The judge noted the contents of the letter. He said that the letter referred to a condition “health anxiety by proxy” in respect of the boy’s mother. However, the judge noted that this was a possibility but it was not a diagnosis. He asked the GAL if it would be in the boy’s interest if his mother obtained a diagnosis.

The GAL responded that the boy and his siblings had all been unwell, and that he believed the focus should be on obtaining a parenting psychological assessment. However, the matter was at stalemate at that time. He reiterated that the boy had a lot of control over his situation but that the parents needed to be able to enforce various structures and supports in his life. He stated that, for example, the boy was meant to have had his iPad set up and to be engaged in at least two hours of homework every day. The GAL did not feel that the boy was symptomatic 24/7 and he should be able to do the assigned homework. He added that there was home school support in place that would help the boy integrate with mainstream school.

However the GAL said that the boy still needed structures and routines around how he was managing himself and that encouraged him to get him out of his bedroom.

The judge then asked the social worker to give her evidence focusing on the updates since the previous review.

The social worker said that she saw no improvement. She said that they had revised the boy’s educational plan on basis that he was not able to attend school often. This involved putting in place a very manageable plan to attend school for 30 – 40 mins for four days a week. His school had also agreed to do one-to-one tuition with the boy. They did not want to set him up to fail so the plan was designed to be extremely manageable.

Unfortunately, the boy had attended school for five minutes on one occasion only. She said that when she visited the boy at home he had been very tired. He had come down to meet her but he was in his pyjamas. She said that his consultant had been extremely clear with her that the boy’s condition should not lead to his current lifestyle.

She said that, starting that week, the boy was to receive home tuition for the full week. The home tutor was to attend the boy that day. She added that the boy’s symptoms should not mean that he does not attend education.

The boy’s life had no structure or boundaries. The boy’s mother told her that the boy was too unwell for these structures. She added that she had asked the boy’s mother to ensure that her son left the house for at least 10 minutes a day but that this did not seem to be happening. The advice from the boy’s medical team was that he needed a routine and that: he should not be on the toilet for hours at a time; he should get up every day and get dressed; he should attend school in person; and he should get outside for at least 10-15 minutes a day.

She said that the boy was completely isolating himself and that it was becoming more and more difficult to actually see him. She said that the boy’s medical team were very clear that he needed to engage in activities that are not “screen based”. For example, he should not be allowed to bring his phone into the bathroom with him to prevent him staying there for hours.

The judge asked the social worker if she agreed with the GAL’s view that a psychological parenting assessment was necessary. The judge added that the situation was very serious and that there was a lot more to the boy than just his disease; the boy’s other potentials were not being realised – “he is just being allowed to live as a sick child”.

The social worker responded that a psychological parenting capacity assessment of the parents was a possible means of identifying a way forward and of bringing about a positive change in the boy’s life.

The judge said that the boy’s parents were doing their best with limited means.  If some good could come out of conducting a psychological parenting capacity assessment that would support them, then it seemed to him that there was no downside. He emphasized that their capacity to parent was not the issue; it was their capacity to parent in these specific circumstances.

The judge noted that the parents had not agreed to undergo a parenting capacity assessment and that he could not force them to do so. Therefore, he could not make any order in that regard.

The CFA’s solicitor told the judge that the CFA was seeking an adjournment to allow them to take a collaborative approach with the parents and to agree terms of reference for a possible parenting capacity assessment. The solicitor also noted that there was a costs matter for the parents. He suggested that both matters be put into the following Monday’s list for a call over for mention with a view to setting a further hearing date.

The judge agreed to the adjournment and the CFA’s approach. He directed that the CFA send a letter to the boy’s mother setting out exactly what it wanted to assess.