Verona Murphy (Wexford, Independent)
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I wish to raise a very sensitive and emotive issue relating to the delivery of home care support services. Changes to the disability home support packages are causing immense distress and anxiety to many families who avail of these services. A constituent of mine contacted me last week regarding her daughter, Fran. Fran is 31 years old and profoundly intellectually disabled. She has refractory epilepsy. When unwell, she can have a seizure every five to ten minutes. She also has epidermal nevus syndrome, a rare skin disorder. She experiences rapid mood changes and sensory overload when changes to her environment or routine occur. Fran is normally good-humoured and happy. She can verbalise with loud shouting sounds when stressed or anxious, but is otherwise unable to express herself or communicate. Covid has caused Fran's personal routine to go out the window. This has resulted in her lashing out and a major regression in her personality and mood which, in turn, makes life very difficult for the family.

Fran's parents are her full-time carers. Her mother, Paula, was awarded carer of the year last year. I was present at the award ceremony. In the same week Paula received the award, she was diagnosed with kidney cancer. She is currently undergoing treatment and has been further diagnosed with chronic obstructive pulmonary disease, COPD, cardiac issues and osteoarthritis. This family was in turmoil and already had its hands full when this cancer-suffering mother received a phone call from the HSE to inform her that Fran's carer of some ten years would be replaced within 48 hours by the HSE without any prior warning. The call to tell her that a new carer would take over on Friday came on Wednesday. It is unbelievably upsetting. I know the personal circumstances of the family. I might as well tell the Minister of State that similar calls came in rapidly from my constituents as the week evolved.

I was contacted by the family of a woman named Mary. She is 68 years old and has Parkinson's disease and intellectual disabilities. Mary likes and needs routine. Her world has been turned upside down already this year with the arrival of Covid, resulting in her not being able to attend her beloved centre every day. This has affected Mary deeply. She cannot understand this monumental change in her life. Mary lives in a predominantly male environment with her 88 year old father, so her carer has been a pivotal part of her life for the past 12 years. The family just cannot understand how the HSE can expect Mary and the rest of the family to accept such a massive upheaval and have a complete stranger come into their home and lives. Such a change would be difficult at any time, but it is particularly challenging in the midst of Covid.

I will not mention the other cases. This situation is too upsetting to bear. It is happening as a result of the HSE realigning home care support services to two sections, namely, disability services and older persons services. I do not believe that it is as simple as that in terms of the delivery of home support services. I ask the Minister of State to fully explain the current changes in the south east community healthcare home support packages within disability services. As I have outlined, the changes are having a grave impact.

Anne Rabbitte (Galway East, Fianna Fail)
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I thank Deputy Murphy for raising this issue. If she had not raised it, I would not have been aware of it. I thank her for bringing my attention to the issue, which means my focus and that of my office are on the matter. She referred to two families that have been directly impacted but it has had a significant impact on many families. For Fran and Mary and their families listening to these proceedings, I am taking on board what has been said about their situation. I acknowledge that it is not acceptable or good enough to ring a person on Wednesday to tell them that after ten years their carer will be changed on Friday.

I will read out my prepared response. We had to go out and find a little bit of information in order that I could answer the question. I know the Deputy has been a strong advocate for people with disabilities. This is not the first time she has raised such issues with me. It is not unusual for her to do so.

As the Deputy knows, responsibility for disabilities is moving from the Department of Health to the reconfigured Department of Children, Equality, Disability, Integration and Youth. My hope is that this will ensure a greater focus on disabilities, rather than it being swamped by other issues in the Department of Health. The move will allow for clearer pathways to be developed and ensure progress is made. The Oireachtas is well aware that reform of disability services is ultimately based on the value for money and policy review of disability services in Ireland, published in 2012. It created the strategies that my Department and the HSE are adhering to in the roll-out of these reforms. This has already ensured that more effective services can be delivered to more people and resources can be better targeted to give better quality of care to the people most in need. That does not mean we cannot deliver this in a constructive, empathetic, understanding and informative way. From the cases the Deputy has presented, that does not appear to have happened.

I have been informed by the HSE that following the review of the way in which it delivers home support services in south east community healthcare, a recommendation was made that all home support staff should be aligned to disability services or older persons services, as the Deputy mentioned. This decision is to ensure the services have clear governance, management and communication and are in line with best practice and national guidelines. I believe the HSE has already been in contact with the Deputy regarding a representation she raised in respect of a service user who is affected by the change.

I understand her concerns about this person and the three others with profound disabilities, and their families, who are seeing this long-standing personal assistant, PA, change. The HSE has confirmed that it has contacted by telephone and letter each of the affected people and their families. Each affected person will continue to have the same level of service and there will be a transition period which will involve a shadowing of work for the new PA alongside the existing PA. That has been progress, as opposed to the call they might have got on the Wednesday about a change on a Friday. I see the Deputy shake her head, so obviously she will tell me that might not have changed.

We also keen to minimise disruption during this time. However, the HSE has been advised that if the families of the people concerned or the Deputy wish to review the situation, they can contact the head of disability services for the area. The HSE is committed to working closely with service users and their families, and this relationship helps work towards further enhancing service delivery for the benefit of the people. It is regrettable that it did not contact the families first before it entered into this process. To think that we are having a discussion after rolling out the process and bringing about such change at this level is very upsetting and traumatic for people who have been through such a frustrating time.

Verona Murphy (Wexford, Independent)
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I thank the Minister of State for her empathy. She can only feel as I do. There was all of what the Minister of State described to me, but it took a week and I made further inroads. I will not mention the HSE official's name, but I found somebody who was empathetic, who took charge of the situation and who said it would not happen again. However, the letters the Minister of State referred to were particularly cold and callous, and I would never like to see them again. In that regard, I hope I will not be referring back to the Minister of State with anything that was put before me last week.

While I was researching this, some significant matters were raised with me by individuals who have great experience. Some of them are retired. They are particularly concerned that the HSE is not communicating the skills that are required to those delivering the education. For example, the education and training boards, ETBs, and other organisations are delivering carer courses, but when a job is advertised by the HSE for a carer there is no correlation between the qualification received from the ETB or some of the other organisations and the HSE requirements. It is no wonder that there is a shortage of carers. I can understand why it is the case. What must happen is that the stakeholders must get together and the HSE should make its requirements very clear. That is what the Irish Road Haulage Association, IRHA, did when it needed drivers. A driver training programme with the ETB was set up by the IRHA. The HSE needs to write its own carer's course and have it qualified by Quality and Qualifications Ireland.

These are the issues causing the problems and they do not come to the fore in what we do every day. I ask the Minister of State to take that on board for the families. They are our most vulnerable people.

Seán Ó Fearghaíl (Kildare South, Ceann Comhairle)
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I fail to see the Minister of State's personal empathy appearing in the response that the HSE has drafted.

Anne Rabbitte (Galway East, Fianna Fail)
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The Ceann Comhairle is right.

Seán Ó Fearghaíl (Kildare South, Ceann Comhairle)
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More significantly, no explanation is given as to why the carers who were providing satisfactory care were withdrawn. Is it possible to explain that?

Anne Rabbitte (Galway East, Fianna Fail)
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I thank the Ceann Comhairle for his input and observation on that matter. He could see that while I read the response, I had to bring heart and empathy to it, for the simple reason that they are lacking. There is no explanation as to why it has changed, other than it is looking at a report and a strategy from 2012. In fact, we are in the middle of a pandemic and many of these families have had their services withdrawn during it. That is particularly so with regard to Mary, who would have been used to attending, possibly, her adult day services. Perhaps it was the same with Fran. That service was withdrawn, and then it was decided to change their carers. We are re-aligning services in the middle of a pandemic as opposed to supporting families. I will revert to the HSE to get a clear answer and, with the Ceann Comhairle's permission, I will come to the House and correct the record as to why.

Seán Ó Fearghaíl (Kildare South, Ceann Comhairle)
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I thank the Minister of State. That is very helpful.