PC Warning: this does not correspond with the current narrative about what people with disabilities need. But with so many families in desperate need of respite, I had to write it.
A lot can happen in 13 years. Back in 2003 , there was only one school in North Dublin that catered for children with severe to profound disabilities and it was residential and run by a local order of nuns.
Smiley became one of only three day pupils attending the school and she seemed to love it from the start. Respite was offered but I did not use it until she was 12, and only then because it was suggested she should get used to it in case I ever had to go into hospital or similar.
It worked really well and this is why.
The school and the residential institution were on the same site. At toileting and mealtimes the children went upstairs to the residential bit and the nurses looked after their needs. These nurses were part of the staff, so Smiley got to know them very well, and they got to know her.
When she did go into respite, she just went upstairs after school as well, and stayed over with her friends from her class, looked after by nurses that she knew. No stress, no mistakes, just a break for all of us and a sleepover for her.
This model of respite worked for the rest of the family too.
You could request respite for special events and ask for it in emergencies too. I was never turned down.
Then the school was amalgamated into a major service provider, and they did things differently. That, plus new Health Service policies meaning that all the children who lived above the school were moved into the community, plus cutbacks thanks to austerity, meant that this model of respite was swept away.
Instead Smiley was offered respite at a purpose-built centre with other teenagers, some of whom she had met before. They seemed to enjoy staying there, but while my daughter was happy to be there for a few hours after school, overnight visits resulted in her coming home quite distressed. I tried to find out what the problem was, introduced social stories and had long conversations with the centre, but nothing seemed to help. She is completely non-verbal, so could not tell me what was wrong, but biting me and refusing all the food and drink that she normally loves made it clear that she did not like respite any more. So I had to stop it completely.
Now I am terrified as to how she will cope if I get ill.
So what of the respite run by the nuns?
I understand that all residential care is now seen as bad, and the model that worked for my daughter will never be available again, but perhaps some of the elements that worked for her could be provided in the future? In common with other adults who have complex needs, I think she needs centre based respite with people she knows of a similar age, non-agency staff who know the adults coming for respite and follow their personal care and activity plans, proper facilities for all disabilities, so that even simple - and fun - things like baths are available. Respite to be available regularly so that the young adult anticipates and expects it, and also to be provided when it is needed.
At the very least a respite centre needs to have the equipment that she needs for hoisting and toileting and staff with the time and dedication to chat to her, entertain her and persevere with her toileting and stretching programmes.
If a small group of elderly nuns could organise this, how come the Health Service with all its resources and committees and strategies not manage something similar?
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