The Care Bill: the final chapter

Guest post by Megan Cleaver, Parliamentary Officer at Scope.

Today’s debate in Parliament on the Care Bill marks the final opportunity for MPs to make changes to reforms the Government claims will transform social care for older and disabled people and make the system fit for the 21st century.

We are looking out for a debate in Parliament on an amendment from Paul Burstow to ensure there is sufficient funding of the social care system. This has support from a broad coalition including the Care and Support Alliance, the Local Government Association, the Association of Directors of Adult Social Services, and Society of Local Authority Chief Executives.

This is an important statement as local authorities and charities can often appear at loggerheads over social care.

Because while the Care Bill has been broadly welcomed by both charities, care providers and local government who have applauded the Government for setting out their vision to create a preventative care system where older and disabled people will not just be supported to survive, but to live full and active lives in their communities, there are grave concerns about whether this bold vision can actually become a reality on the ground.

Cuts to local authority budgets of more than 20% since 2010 have had a devastating impact on social care provision. Indeed, just last week Age UK reported that over 800,000 older people were going without vital help due to the squeeze on social care funding.

To reverse this damaging trend, Paul Burstow’s amendment would require the Care and Support Reform Programme Board (which brings together senior figures from both local and central government responsible for commissioning and providing care services) to report annually to the Department of Health on whether they are satisfied that sufficient funding is in place to ensure that the reforms in the Bill i.e. creating a preventative care system with the well-being of care users at its heart- can be implemented.

In addition, the Programme Board would also review where the new “national eligibility threshold” for care has been set. This is hugely important as last June the Government stated its intention to set, and thereby fund, the threshold at a level where only those older and disabled people with ‘substantial’ needs will be able to get care. This will mean that hundreds of thousands of older and disabled people with ‘moderate’ needs will be denied the care they need to get washed, get dressed and get out of the house- the very essence of an individual’s well-being.

Without this reporting from the front line of social care, shortfalls in funding will likely continue leaving too many older and disabled people unable to benefit from the preventative care system they had been long promised.

Indeed, recognising that Labour’s vision for “whole person care” will not be achieved without the necessary investment, Shadow Care Minister Liz Kendall has also put her name to this amendment- making it a truly cross-party appeal to the Government to ensure “the most valuable legacy in health and care reform for a generation” can truly be achieved.

Because while the Government has claimed that the key to putting social care on sustainable footing is to ‘use the resources we currently have more efficiently’, there is significant evidence that it is  through properly investing in social care that is in fact the most efficient use of local authority budgets.

Join us on Twitter this afternoon for live Tweets from the report stage.

Why do you want to label your child?

Guest blog by Lauren Roberts, Coordinator SWAN UK (Syndromes Without a Name).

Young girl in a push chair A controversial new book caught the headlines last week claiming that dyslexia is a meaningless label which holds teachers and parents back from helping children. The Dyslexia Debate claims that testing for dyslexia is merely a waste of time and resources.

While the book is talking specifically about Dyslexia, it raises a more general question that families are often asked – why do you want to label your child? The social model of disability says it is society that disables people, not their impairments. This is very true, but aside from the emotional need for a diagnosis that many parent seek, there are also some very real, practical reasons why diagnosis is important.

1. A diagnosis may offer a prognosis

People are often surprised to learn that around 50 per cent of children currently undergoing genetic testing through the NHS may never get a firm diagnosis. Without a diagnosis families have no sense of what the future might hold. They have no developmental charts to refer to, no idea whether their child will walk or talk, or even what their life expectancy might be. For parents of children with very complex medical needs, the first few months and years can feel like an endless search for answers.

2. A diagnosis opens doors

Boy smilingAlthough support should be based on assessed need, the experience of many families is that without a diagnosis it can be difficult to access support. Without a diagnosis it can be difficult to get people to take your child’s needs seriously – even if they have very obvious difficulties. You have nothing to write in the box on forms that asks for diagnosis and, in a time of budget cuts, a lack of diagnosis can be used as an excuse to deny support.

3. A diagnosis helps predict recurrence

Without a diagnosis it is impossible to test or predict the likelihood of the condition recurring. There is no way to know if future children or grandchildren will be affected – or whether siblings may pass the condition on to their own children.

4. A diagnosis may help direct treatment

Without a diagnosis it can be difficult to know what is the best course of treatment. Some children respond unusually to drugs and have undergone numerous surgical procedures without success.

5. Without a diagnosis you often feel like you don’t fit in

Mum hugging young boyFamilies of children with undiagnosed genetic conditions often feel they don’t belong with other networks or groups that offer support to families of disabled children. They dread having not having an answer for the ‘what’s wrong with them’ question.

SWAN UK (Syndromes without a Name) is an initiative of Genetic Alliance UK offering support and information to families of children with undiagnosed genetic conditions. On Friday 25 April, we will be leading the UK celebrations of Undiagnosed Children’s Day. We’d love you to support us!

Find out more about our It’s a Mystery Day and how you can get involved.

Scope’s Face 2 Face schemes offer emotional and practical support and operate across the UK. Any parent of a disabled child may use their local scheme, even if your child hasn’t been diagnosed.