The lives of local parents caring for children with additional needs will be transformed by a £304,000 four year grant from the Big Lottery Fund.
Carers Trust Fylde Coast is celebrating having won funds to offer a brand new frontline support service in Blackpool – after the success of a pilot project for parent carers.
The move comes at a crucial time. Key legislative changes in the Children and Families Act now recognise the huge toll that caring for a child with additional needs can place on the health and wellbeing of parents.
Blackpool has 4,045 children registered with a range of additional needs, whose parents carry out a caring role for them (Blackpool School Census 2014).
The grant will fund a four year Parent Carers project – called Hand in Hand – via a single point of access to the charity which is now standing by for further referrals.
Chief Executive Officer, Michelle Smith said: “We are thrilled to have the support of the Big Lottery Fund. This grant will change lives for the better across Blackpool. It will help end the isolation felt by many parent carers.
“It means we can strategically target their needs – much as we already do with Young and Adult Carers.
“At present parent carers are a gap in existing provision. We will work in partnership with Highfurlong, Park and Woodlands schools along with local agencies such as Aiming Higher and Children with Disabilities Team. We will also support families who live outside Blackpool but who are registered with a Blackpool GP or attend a Blackpool school. Our pilot project has shown the need for a more targeted, bespoke, service.”
Park Community Academy said: “Most parent carers have been at breaking point when accessing the pilot project, either emotionally or financially, potentially impacting on the whole family. The rapid response of the service is one of their strengths when dealing with referrals.”
The charity is recruiting additional specialist workers to support parents who look after local children with a range of additional or special needs from autism to sensory to severe physical difficulties.
The charity is 10 years old having delivered services to carers of all ages in the unitary authority of Blackpool since 2005.
Demand has soared since 2008, when it had four staff, 170 registered carers, and three volunteers. Last year it had 20 staff, 3005 registered carers and 82 volunteers. Formerly known as Blackpool Carers Centre it rebranded as Carers Trust Fylde Coast last year.
In April 2014, it became the single point of access for all local carers
The charity ran a parent carer pilot project after identifying a skills and services gap in local carer support provision. The pilot project was developed by Liz Loftus, a student social worker on placement.
Big Lottery funding will enable the charity to build upon the success of that pilot project – which had astonishing results for the several hundred carers involved.
For charity Chief Executive Officer Michelle, the successful bid ends a two year fight for funding – and she is now squaring up to the next challenge, a new headquarters for the charity.
She explains: “We knew we had to fight for this – it was so important. Whilst the service is funded to support adults caring for adults with disabilities there is no statutory funding or strategy to support adults caring for children with disabilities.
“Our pilot project evidenced the high level of unmet need and demonstrated that the gap would remain without funding from non-statutory sources.
“It made a real difference to the lives of local parent carers and their families. We are keen to develop peer support networks resulting in long term support and friendship for our families.
“It established strong, effective partnerships with local special schools and agencies resulting in effective referral pathways.
“It made most of the parent carers involved simply feel better – in so many ways. Parent carers are an isolated community with few support networks. They report feeling stigmatised and judged by others when their child’s behaviour becomes challenging in public.
“They experience poverty as caring for a child with disabilities often prevents them from working. They have low aspirations as they don’t consider their own lives outside their caring role as worthwhile. They suffer poor emotional and physical health, due to stress, and their wellbeing is affected by lack of sleep and respite.
“Most are unaware of information and guidance about their rights, local services and support available. They do not feel valued for their vital role nor recognised for the barriers they face.
“Hand in Hand will raise awareness of parent carers, the challenges they face and will ultimately identify new parents as ‘carers’ and provide support for some of the most vulnerable families.”
Blackpool Council carried out its own consultation with parent carers who spoke of the struggle faced in navigating the systems relating to their caring roles.
Michelle adds: “ We couldn’t have a better champion – Blackpool Council has been in full support of our bid and knows it will have a great impact on Blackpool.”
Since the pilot project began, 224 parent carers have accessed support. Of these 74 per cent had experienced poor emotional health and wellbeing due to the challenges of their caring role. In addition, 54 young sibling carers have also been identified as carrying out a caring role within the family.
Michelle adds: “The non intrusive and person centred approach taken had an unexpected outcome as it has also supported schools/services to engage with ‘hard to reach’ families.”
The Children and Families Act (2014) now gives parents with disabled children the right to an assessment of their own needs by the local authority – and for the local authority to consider the wellbeing of parent carers. However, there is little in the way of funding or service once those needs have been identified –predominantly because of cutbacks.
The Act also introduces education and health care plans which will replace statements of education needs, with implications for many parent carers wanting support, guidance and advocacy from an impartial service or professional to support them to be involved in this process.
Blackpool Council has already signed up to the ‘Local Offer’ – providing information and advice to parents with children with additional needs.
Pilot project factfile:
The pilot project had one overwhelming result – most of those who took part felt better at the end of it.
Analysis of 224 parent carers via focus focus groups and one to one meetings, confirms the issues and impact of: isolation, more than one child in the family with a disability, parent with a disability, mental health or long term health condition, single parent, transport and housing issues, domestic violence, lack of social support, lack of confidence, low aspirations, poor quality of family life, family breakdown, low emotional wellbeing, lack of information and stigma. Most (87 per cent) felt unsupported in their caring roles and some felt their whole family was excluded, not just their child with special needs. The project also helped ‘hidden parent carers’ come forward for help.
Crucially, 97 per cent of those who accessed the pilot project reported feeling better informed on support; 86 per cent reported feeling better in general; 82 per cent felt less isolated; 63 per cent reported better health having been supported to attend GP appointments or signposted to counselling and other services; 55 per cent reported that their caring role had improved through one to one support or signposting to other services.
Some parent carers reported that siblings of the child with the disability were being helped by attending groups such as young carers – and that the child with the disability was also taking part in new activities.
More than half (52 per cent) found they managed at home better, 44 per cent felt they had more time to themselves having attended groups, trips and activities, or been able to meet up with friends and family; 64 per cent reported improved finances; 35 per cent reported improvements in their working life.
One of our parent carers stated: “ Without the project, everything would have broken down. I now feel better in myself, the children are now accessing groups and Bradley* loves the Young Carers’ Project. All this makes me feel better. I need someone to support me and check in with me to keep my on track. The support I received was positive, compassionate, genuine and not intimidating. “
As a result of the pilot project, the charity received funding to purchase a caravan in the Lake District for parent carers – from the local authority’s Aiming High capital grant – which will provide family trips many couldn’t afford otherwise. The charity also won a new sustainable contract with local special schools providing work placements with employers for young people with additional needs.
*Name changed to protect identity.
For more information please contact the office on 01253 393748 or email admin@carerstrustfyldecoast.org