‘Decongregated Settings’ – Hailed as progress, but seems to forget those with complex medical needs

Jeanette McCallion welcomes movement towards a community-based social care model, but cautions that complex medical needs among people with intellectual disability still require medical services, previously provided in congregated settings, to be maintained and improved in this environment.

Jeanette and Cliona
  • The RTE documentary on Áras Attracta was very difficult for anyone to watch, but especially when you have a close family member with ID.
  • The only good thing to come out of the footage is that it started to make people take more notice of the care given to people with ID.
  • There is lots of discussion about change, and closing down centres such as Aras Attracta to set up more homes in the community for people with ID.
  • I am in favour of this in general, but the ‘one size fits all’ approach will not work for everyone.
  • Unfortunately my sister has such severe seizures that she needs a nurse with her at all times.
  • Because the centres are no longer taking in new people, and without there being special nursing care houses in the community, she is without a service.
  • I hope that this will soon be noticed and those who need medical care get the services they need.

In December last I watched RTE’s Primetime Investigates on Áras Attracta, Bungalow 3.  Knowing in advance that the footage would be bad, I debated with myself whether I should make myself watch it or not.  The main reason for my unease is that my seventeen year old sister Cliona has profound ID as well as an extreme epilepsy syndrome that no seizure drug has ever been able to influence.   At some stage in the future Cliona will be in full-time residential care.  In fact, suitable full-time residential care within a local service not unlike Áras Attracta is our ‘holy grail’, something that we have been relentlessly pursuing for Cliona over the last few years.

Watching the documentary was particularly painful for me. I could not believe the brutal force and complete lack of respect I was seeing.  All I kept thinking was ‘this could be Cliona’.  I felt nauseous, and so, so angry.  The abuse so clearly highlighted in the footage cannot be blamed on cutbacks or staff shortages.   I watched staff members idly sit around texting on their phones and watching television, amidst sickening displays of cruelty, violence, and taunting of elderly women with profound ID.  I could not stop thinking about it afterwards.  As the media storm took over the following day, I wondered what sort of a country we live in to provide ‘services’ like these to our most vulnerable?  I was embarrassed to have trained in a health system where this kind of inhumane treatment could happen.  There followed lots of discussion by government ministers on whether this sort of abuse ‘could’ be happening elsewhere.  How could anyone be so sanguine as to believe that this happened only in one particular house, in one particular centre, in one particular county?  I think the entire country was ashamed and appalled.  But when you face a future where your most loved family member will one day depend on the care provided by this state, this footage takes on a whole new dimension.

I was heartened though, by the amount of noise and public outrage that ensued following the documentary.  At least there was talk about the state of ID services in this country.  Intellectual Disability is usually an area that struggles to attract media coverage and has not the same appeal as other areas for grabbing the public’s attention.  Unlike cancer it is always there, consumes lots of money, and will never be ‘cured’.  Cynics would also say that people with ID are low priority when it comes to funding, as they are a group of our population that cannot assert themselves through our democratic system.  Even within medical training, the area of ID is hugely neglected.  Although I trained as a general practitioner, over my many years studying and training on the job I did not get any specific training in this important, challenging and complex area that needs well-trained and interested doctors.  There should be specific training for doctors for some of the challenges that arise in looking after the complex needs of people with ID.

Another positive that arose from the awfulness of Áras Attracta was that it prompted me to attend the Inclusion Ireland AGM in April for the first time.  Up until then my entire focus was helping with the care of my sister, advocating for services for her, and not really contributing to the collective cause.  I now realise that I need to voice some of the difficulties and challenges we are facing with Cliona on a bigger stage, as I know that we are not the only family going through this.  I believe that families are so consumed with coming to terms with their child’s or sibling’s disability, as well as navigating the disability services, fighting cutbacks and knocking on closed doors, that they have no time or energy left to try to raise the issues on a more collective level.  I think it is especially important at the present time to become involved in advocacy for ID, as there seems to be movement towards changing the way care is provided.  And no-one can argue that change is not needed…  However, change needs to be carefully considered, and needs to remember everyone with ID, those with mild to profound ID as well as those with complex medical needs like my sister.

One term that I have become very familiar with in recent times is ‘decongregated settings’, which I understand to mean that new admissions to congregated-type centres will no longer happen, and that the current centres will be replaced by a community-based social care model.  The 2011 HSE policy ‘Time to Move on from Congregated Settings – A strategy for Community Inclusion’ outlines the detail of this plan.  I have read this report with great interest and I can see that there is good evidence from other countries to support this approach.  I clearly see that many people with ID could be better served if more closely integrated into the community.  However, the closed doors of the current congregated services have not been replaced by equivalent services in the community.  Furthermore, for those like my sister with complex epilepsy, or other medical needs there appears to be no discussion on how medical/nurse-led care will be provided in the community.

Currently Cliona is being cared for in the family home, with agency care staff paid for by the HSE through a private organisation, as there is no community nurse care available to her.  Because of limitations in the scope of the social care model around medication and seizure management, we as Cliona’s family have to be heavily involved.  My parents are in effect the house managers, and fill the gaps where a staff member cannot show up.  Each time new staff comes to the house, my parents try to train the carer on the complexities of caring for Cliona, and the different types of patterns she goes through.  The care-staff are wonderfully caring, and really seem to enjoy caring for Cliona, but often speak of how medically complex she is and question why she has not a nurse present with her.  They have had to manage some very severe and distressing tonic clonic seizures to the best of their ability.

What would I like for my sister?  Sadly Cliona’s seizures will never be cured, short of some miracle treatment for her unique type of epilepsy being developed.  I would like her to be accepted by a specialist ID service, either in a congregated centre with nursing care or in a nurse-led community house.  I am very concerned that the small percentage of people with ID who, like Cliona, also have complex medical needs, are being forgotten in the well-intentioned move to ‘Decongregated settings’.  Let’s not forget the minority within the minority; those with ID who also need clinical support for their complex medical needs.

Jeanette McCallionJeanette McCallion is older sister to Cliona, who is 17 years old and has a rare serious epilepsy syndrome with profound ID. She lives in Dublin not far from her parents and Cliona. Jeanette trained as a GP following her medical degree at Trinity College, and spent several years working in the Dublin hospitals and various GP practices around Dublin and Kildare. She is currently working in the area of Pharmaceutical Medicine.