Guest blog by parent carer Maureen, Co-Chair of The National Network of Parent Carer Forums (NNPCF).
My 24 year old daughter, Caitlin, started work nearly a year ago and left our home in the North East in February 2018 – it’s quite the usual thing and yet it took us by surprise. My son left home when he went to uni, following which he travelled the world and then settled down in full-time work in London where he has remained ever since. Two children grown up and flown the nest however one of them has complex needs (including Autism, learning disabilities and a degenerative physical disability), whilst her brother works “in the sector” as a teacher.
Caitlin on her first day in her new home.
If you had asked me 18 months ago if this was possible I would have said no. My daughter was just finishing education and we had no idea of what to do after that. A day centre was not appropriate, employment seemed unlikely and so we were left with the option of her volunteering and spending time with us. Our expectations were also lowered by her being on the Local Authorities list for supported accommodation for 18 months.
As older parents we always knew that we needed to get her settled and secure while we were able to influence things. The very worst thing would be a crisis placement for her because we had become too infirm. Her brother said she would be able to live with him, but, apart from the impact on his life, Caitlin has her own life and friends here in the North East and doesn’t know anyone in London.
However, out of the blue, a phone call from a social worker announced that there was a place in a brand new development that had been earmarked for Caitlin if we were interested. She could have an adapted bungalow, which she could remain in even if her disability developed at such a rate that she would become a full-time wheelchair user. There would also be staff on site 24/7, all year round, with lots of supporting technology around the complex to help her feel safe and secure.
In addition to this she had been offered some hours of permitted work at a hotel where she had been on placement during her supported internship. Permitted work meant that she was able to keep her ESA as she was doing less than 16 hours per week and there were mentors in the placement.
So, after a lot of visits to the complex, sleepless nights and anxious days, meeting the staff and other residents – Caitlin moved into her bungalow. We were asked not to visit her for a week to enable her to get used to the staff. They had a “homesick” programme ready, based on her needs if required (it wasn’t).
Since then, she has thrived. Her decision-making skills have improved tremendously, a comprehensive personal profile and staff who give her time to make decisions are key. Not everything has been wonderful, unsupportive staff have been dismissed, other residents having difficulties have meant sometimes she has not had support when scheduled but she still feels safe and secure. The staff have accommodated changes to her week and made suggestions whilst leaving the final decision to her. She calls her bungalow home.
All the mechanics of living there – such as setting up the Sky package, water rates, gas and electricity accounts – were all left to me and I still look after them (with Caitlin’s consent), she and I have a joint account into which her benefits and wages are paid so I can help her see what is going out of the account.
The first few nights were spent sleepless with my phone under my pillow, just in case. Support was front loaded for the first 2 months and reviewed with her social worker, the carer provider, us and most importantly – Caitlin. At that time, it was reduced by 3 hours but it is unlikely to be reduced further now, unless she improves dramatically (in particular her ability to handle money which is something I think she will always need support with).
Her bungalow has become her safe space – the same as her bedroom was in our house – and she rarely invites others into it, apart from the staff, as that makes her feel comfortable. She has a lovely garden which is maintained for her and she is happy to entertain other residents there – but it is rare to be allowed into her house. Mainly I think this is because she is not yet sure how to get rid of people!
Letting go was difficult, I admit, but we always knew it needed to be done and in doing it this way it has felt like a family decision not an enforced decision. Do we miss her? Of course we do! But to see her happy, fulfilled and having a life that she is in charge of is fantastic.
