From the day our daughter was born we wanted to make sure she had a life. Her twin brother died at a week old. We dreamed of a life with a rainbow and a pot of gold at the end. A life where she would have friends and relationships, go to mainstream school, reach her academic potential, work, travel, have lots of fun and buckets of love.
A life worth living in the same way as we wanted and hoped for our other 5 children.
We also knew that she would be cute and disabled as a child but then as she got older she would no longer be cute. She would be living in a world of prejudice, discrimination, fear and lack of respect. We wanted to give her the life skills to make sure she could survive in a world that was not ready or welcoming to her.
We knew also that we would do everything we could to give her the right to make choices, and have control over her life and NOT to end up in some crappy care home where she would be vulnerable to abuse, neglect and dehumanisation as a non-speaking severely disabled person.
We took the road of inclusion which meant at 5 years old she had a powerchair to get around, a communication aid device to talk, and a cochlear implant to hear. It also meant that she was the youngest person in our area of Calderdale to receive Direct Payments.
For 20 years plus we have managed a small budget and a team of personal assistants. Sometimes up to 9 people. We pay more than the hourly rate as each person we recruit is skilled, enthusiastic, motivated, has excellent communication skills and some have first class British Sign Language skills. They are all exceptionally flexible and get a lot out of working with our amazing daughter. As a result she is able to do the things that she loves, that are purposeful and that give her self-worth. She is above all safe and happy.
For that we are penalised. We drown in the whole Direct Payments dream. Self-directed support is a great concept. We doggy paddle in deep waves with no life jacket. No one there to come and rescue us. Feeling dumped by our local authority who are happy in the notion that we save them money. However, we never wanted to be unpaid managers (or even paid ones), who have HR policies and procedures in place at the risk of having to be sued and go to tribunal. The horrendous headaches of recruitment, the stress of rotas, of no emergency back up teams, of PAs going off on maternity and no budget to cover them, the never ending worry of the budget being cut and the social worker doing another bloody assessment. I do the nights as there is not enough in the current budget to cover this and we have had volunteers for 7 years but this will end in July 2019 due to new policy (!).
Our job is now being to write a care plan/support plan, policies, guidelines, induction packs, training programmes, competency templates, medical files, communication book, diaries, appointments and medication journals, calendar for events and going out.
Burdened, exhausted and knowing that this is not sustainable. Our daughter is fearful that when we die there is no one to do this. We need an increased budget so she can move out with a team of PAs. The choice is limited – care home or direct payments. We need a team in the community to assist us, to have back up when things go wrong, to have the co-ordination and management done by someone else. Then we can go back to being parents.
Katie – what can we say. Absolutely nothing. You write in a brutally honest way. As a paediatric nurse I have seen this so often and know the final worry of parents is ‘and what when we aren’t there?’ With love from Petra and Joe x.
I was thinking of taking my daughter budget but now I don’t know if I should so hard
There are huge benefits in your daughter having her own budget. Recruiting your own staff makes a real difference to people who rely on support. There is no doubt at all that it also means that there are added responsibilities as an employer. For us personally this is the best and safest route or she would end up not receiving such good care. What I would like to see is in every area more support for us to manage the budgets.
I work with many familes where we take off this burden fir them. We are a charity called friends and places together and based in Southend. We support staff, train staff on behalf of families and help them through this complicated maze. The real cost to the charity is £13.00 per hour and we can only invoice £11.36 an hour. Its tough but 6 years on we are still here and managing somehow.
Thanks for this That is really helpful as this is the sort of work we need to be sharing, supporting and replicating.