How the views of parent carers are informing short break provision in Hampshire
Contact a Family case study about a parent carer forum working with their local authority. Written by Sharon Smith, Contact a Family.
"For some parents the provision of short breaks simply means the difference between being able to cope with their disabled child, and not being able to cope."
Themes Emerging from the Qualitative Research into the Impact of Short Break Provision on Families with Disabled Children', Centre for Disability Research, December 2009.
Hampshire County Council provides a range of short breaks services which have been developed in partnership with parents and carers, and which over 5,000 families access. These services have proven to be hugely successful in helping children and young people with additional needs and disabilities to take part in positive activities, and in providing their parents and carers with a much needed Short Break from their caring role.
These services meet the needs of a wide range of children and young people, and include buddy schemes, supported access to mainstream groups and the provision of specialist activities and play schemes. Parents and carers pay a contribution which covers the cost of the activity, and funding is made available by Hampshire Council to provide the support required to enable children with additional needs and disabilities to access these services.
The Hampshire 'Gateway' short breaks service offers a range of short breaks to all children and young people aged 0-19 who live, or attend school in Hampshire (excluding Portsmouth, Southampton and the Isle of Wight), and who have a disability or an additional need. The service is mainly open-access, with the exception of support provided through the Disabled Children's Team following a social care assessment of needs.
In 2014 over 5,100 Gateway Card holders were able to access a Short Break from caring. This is an increase of 46% year on year from 2013 (3,500) and 325% compared to 2012 (1,200).
The 'Gateway' short breaks service has been developed through a high level of engagement with two local organisations: Parent Voice and Hampshire Parent Carer Network, the local Parent Carer Forum. Decisions on how funds are allocated to short Breaks services are made at grant funding panels which include parents, carers and local authority officers. Parent Voice and Hampshire Parent Carer Network representatives are also involved in the short breaks strategy working group which co-produced Hampshire Council's short breaks service statement.
Parental feedback on the 'Gateway' short breaks service is very positive! This highlights the importance of these services, both for them and their children.
- "Great activities for my son and such a lifeline for me. A short break allows me to keep going through the really tough times."
- "This is the only way we can have a break from caring. It is a lifeline service."
- "Parents and carer of these young people need time to recharge their batteries and the young people benefit from time spent with other young people."
- "This is the only time my son can attend an activity without me, it is my only break."
- "Short breaks enable my disabled son to play with his friend, and his siblings to have a bit of normality, they are vital!"
Despite financial pressures on statutory services in recent years, the local authority had made a commitment to protect short breaks services in Hampshire by maintaining funding at consistent level. However, due to the number of children accessing short breaks services increasing, amount of available funding per child was effectively less. Through effective partnership working, the grant funding panels and parent representatives were able to work with providers to achieve the same level of services for families in despite these challenges.
In January 2014 a report was presented to Hampshire Councils' Children & Families Select Committee which set out the budget for Children's Services in 2014/15 and options for the 2015/16 budget. This report included a proposal to reduce the Children with Disabilities budget from £3.5m to £2.5m by cutting provision in residential care, respite and short breaks services.
Hampshire Parent Carer Network knew how important this provision was because they had been involved in the development of the 'Gateway' short breaks service which greatly benefited many families. They also recognised the impact on families if these services were cut, namely that they would likely end up in crisis.
Because of these factors Hampshire Parent Carer Network felt it necessary to initiate discussion with the local authority to understanding their reasoning behind the proposals, to ensure the value of short breaks was fully appreciated and to explore the potential for workable alternatives.
This area of participation, lasting over a year, involved the local Parent Carer Participation Representatives, Hampshire Parent Carer Networks' Participation co-ordinator and much support from many of the families living in Hampshire. The work was all encompassing and took a great deal of time, energy and commitment.
In addition there was the added emotional aspect felt in understanding how important these services were, and the devastation families would experience if they were cut. Despite these challenges Hampshire Parent Carer Network were proactive in ensuring that the positive relationships with the local authority and other partners was maintained, and that this would shape their approach with the activities undertaken.
As part of the program of participation activities, legal advice was sought on what options there may be to support the provision of short breaks services and to query the process around reducing these services. This enabled Hampshire Parent Carer Network to be able to engage with the local authority in an informed manner, and to be able to understand and articulate the value of short breaks services alongside the legal duties and responsibilities for statutory authorities.
Wider areas of activity included the launch of a hort Breaks survey to gain the views of parents and carers, providers and other stakeholders; presenting these findings and further reports to the Children & Families Select Committee; making deputations to the Executive Lead Member for Children's Services; the establishment of a cross-party councillor-led Task and Finish group to review short breaks provision; encouraging families to highlight the personal value of short breaks services to their local councillor; and supporting families to be able to engage in the local authorities' consultation process in an informed manner.
In January 2015, Councillor Mans announced that the Hampshire County Council would use funding from their reserves as a one-off payment to protect the budget for short breaks services in 2015/16. Whilst no formal announcements have been made about budgets for 2016/17 and beyond, a new partnership working group has been established with representatives from Hampshire Parent Carer Network, Parent Voice and from short breaks providers.
This is considering what range of short breaks services could be delivered on a significantly reduced budget. There have been a series of meetings and workshops that have taken place from March-June 2015 and ongoing, and it is hoped that recommendations from these group can be used in a future consultation about proposed cuts to the short breaks service.
Steve Crocker, Deputy Director, Children and Families:
"There's every reason for local authority officers to engage effectively with parents groups. As well as their experiences of parenting disabled children, parents have a range of valuable experiences, ideas and skills which can help shape future service provision, even in the most difficult of circumstances."
Gail Bedding, Chair, Hampshire Parent Carer Network:
"Maintaining our relationship with the local authority is key to our work, we are involved with many other work streams that will make a difference to many families and it is very important that we are respected."
Kieran Lyons, County Integrated Disability Services Manager:
"Hampshire Parent Carer Network has worked with Hampshire County Council on shaping our short breaks services for the future. Although this has been a challenging and difficult process, the recognition that parent involvement often leads to better outcomes has meant we have been able to acknowledge our differences while agreeing the route for the future"
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