We received the news on Friday afternoon that the panel have rejected our carefully put together proposal for Zach.
It isn’t good news but was apparently to be expected. The panel who decide on who gets what regards social care packages felt that Zach should still be in education (despite delivering valuable education programmes Beam are a care provider as opposed to education). Imagine someone else making the decision for your 18 year old that they should or should not still be in an unsuitable educational establishment…..what happened to human rights?
In this case social services want Zach to be financed by education even if what is available is unsuitable or a residential college. I have never considered a residential placement for Zach, he loves John and I, and we love him. Although life isn’t easy by any stretch of the imagination we are a family and a unit and I firmly believe we know Zach best and what will work for him.
From a financial point a view, the kind of residential placement suitable for some one with autism and the complex needs which Zach has, would cost at least double what we are asking for. This is for him to be educated close to home and a community that knows him and he is familiar with.
So, I will be meeting with Belinda Blank who is a marvellous advocate for people with autism and learning disabilities this coming week. She will be speaking to a specialist solicitor for as, we are always prepared to go BIG! We will plan our next steps.
There is new government legislation called ‘Transforming Care’
The Transforming Care programme is focusing on addressing long-standing issues to ensure sustainable change that will see:
- more choice for people and their families, and more say in their care;
- providing more care in the community, with personalised support provided by multi-disciplinary health and care teams ;
- more innovative services to give people a range of care options, with personal budgets, so that care meets individuals’ needs;
- providing early more intensive support for those who need it, so that people can stay in the community, close to home;
- but for those that do need in-patient care, ensuring it is only for as long as they need it.
Led jointly by NHS England, the Association of Adult Social Services (ADASS), the Care Quality Commission (CQC), Local Government Association (LGA), Health Education England (HEE) and the Department of Health (DH), the Transforming Care programme focuses on the five key areas of:
- empowering individuals
- right care, right place
Transforming care is about joined up care and communication between Health and Social Services and Hertfordshire is one of the counties chosen to fast track the programme.
Nobody from health, social services or education has mentioned ‘transforming care’ to me but fortunately I attended a talk about it earlier this year and despite there being no handouts had made notes, I will now be asking some questions about how ‘transforming care’ will work for us.
There is also the Care Act of 2014
The Care Act introduced a general duty on local authorities to promote an individual’s ‘wellbeing’. This means that they should always have a person’s wellbeing in mind and when making decisions about them or planning services.
Wellbeing can relate to:
- personal dignity (including treatment of the individual with respect)
- physical and mental health and emotional wellbeing
- protection from abuse and neglect
- control by the individual over day-to-day life (including over care and support)
- participation in work, education, training or recreation
- social and economic wellbeing
- domestic, family and personal relationships
- suitability of living accommodation
- the individual’s contribution to society
So we have a little ammunition, which used in the right way should help our case.
We are a little down but we are by no means out! I simply cannot accept anything but what is needed to enable Zach to live in the community and have a happy and fulfilling life.
Don’t look so serious Zachster, we will get there in the end. xxx