The purpose of this letter is to highlight the fact that even when funding and entitlement are there, services are often lacking. My family has suffered significant stress and difficulty because of a lack of service provision to meet assessed needs, as carers it feels as if our rights and welfare do not matter, for our disabled young people the sad truth is that we cannot continue much longer, no-one loves them or can care for them as well as we do, but our inevitable collapse, if services don’t get sorted soon, will mean that they would have to be cared for elsewhere. I have made this letter public for us and others like us……
Dear Mr Jones MP
I am writing to you to raise my concerns about the appalling difficulties in obtaining reliable local support services for autism and challenging behaviour my family has experienced in the last few years. We find ourselves again and again in the position of lacking the support services we desperately need, to cope with the demands of caring for our two severely disabled young people.
We regularly encounter issues with getting the support we need. The main issue is with a woeful lack of local Short Breaks (respite) options for our young people, through both adult and children’s services; when a service fails, stops or is unavailable we are left with no replacement for the missing service for months at a time. These issues are often out of the control of not only the Care Managers, but also their managers, there are simply not services available to meet the assessed needs. Time and time again it is my husband, my non-disabled adolescent daughter and myself, who not only have to meet the increased caring demands these gaps in service create but also have to cope with the impact these deficits cause on our own health, well-being and autonomy.
As a family we have made many official complaints but we have lost faith in these having any long term beneficial effect to the services we receive. Our most recent complaint against NYCC Children’s Service was taken up to Ombudsman level, before being resolved after the Ombudsman found a number of failings. However, we have still experienced significant gaps in service this year. We complained to NHS Continuing Care, regarding the thirteen month delay in establishing overnight respite services for my son, when he reached adulthood; despite their apology and offer of additional respite to ‘make up’ the missing time, we did not receive any of these recompense respite nights and have again been without any overnight respite breaks for him for several months. On top of this, his day care service has had staffing issues which resulted in more missing support. Over the summer break we were missing a total of 45 hours respite services, per week, for both young people. All involved agencies agree that for us to continue in our caring roles under such pressure is untenable, yet that is exactly what we are expected to do until services can be sourced. Additionally, we have been told that it is not possible to have a contingency plan in place in case of emergency, such as someone needing urgent medical treatment, as no emergency care is available. It’s precisely because services cannot be conjured out of thin air that we need to plan for emergencies and in fact Carer’s UK state “Every carer who has an assessment should be asked about emergencies and offered help to plan for them”.
Furthermore the constant need to fight to access other support services from health, social care, and education exacerbate the stresses of an already challenging family situation, often on little or no sleep.
After the Winterbourne View scandal the government response laid out “clear, timetabled actions for health and local authority commissioners working together to transform care and support for people with learning disabilities or autism who also have mental health conditions or behaviours viewed as challenging. Our shared objective is to see the health and care system get to grips with past failings by listening to this very vulnerable group of people and their families, meeting their needs, and working together to commission the range of services and support which will enable them to lead fulfilling and safe lives in their communities.” (Transforming care: A National response to Winterbourne View Hospital, Department of Health Review: Final Report) We should be being supported to look after our young people at home and, in time, within their local community and this shouldn’t be at the cost of their or our own, health and welfare. Without appropriate, reliable local services this, in reality, cannot happen. There is an identified ‘spike’ of autism in the Harrogate area and we are sure that we are not the only local family struggling. We appeal to you, our MP to speak up for us and others like us.
The Grant Family.