BBS DLA Green Paper

Brittle Bone Society Respone to Green Paper
Future of Care Together

12th November 2009

 The Brittle Bone Society welcomes the publication of the Care and Support Green Paper Shaping the Future of Care Together as an important reform of social care and support and look forward to working with Government and all the other stakeholders in bringing these plans into place.

In the consultation process that followed the publication of The Case for Change we note that others including the Disability Alliance highlighted some key areas which the Green Paper needed to focus on.  Those included Information Provision; Choice and Personalisation; Fairness and Transparency; Consistency in Assessments and Advocacy and Brokerage.

It is heartening to note that for disabled people many of these issues will be covered by the creation of a universally accessible National Care Service.

Osteogenesis Imperfecta (OI) is a genetic condition that causes severe fragility of the bones which results in the bones being liable to fracture at anytime without trauma.  Each time a bone is broken and set it will heal in a position slightly less than perfect.  This may result in weakness and pain in old fracture sites and lead to difficulty in walking and in other areas of mobility.  The severity of the condition ranges from person to person, each of the three children pictured are affected by OI.

The Brittle Bone Society would ask you to consider the following in response to the consultation questions raised:

1. Is there anything missing from the six elements?
While we would welcome a National Assessment it must be established that this would not lead to National Entitlement, the Brittle Bone Society would welcome such a change.

The role of the carer and particularly the working carer experiences very little emphasis throughout the Paper and this is a role that must be fully appreciated, acknowledged and planned for in any Government document.

2. Joined up Services
The Brittle Bone Society agrees services should be joined up and through this strong and consistent communication between departments. 

An example of a barrier to this:
 A young person going to university in a different local area needs care in terms of personal care (bathing dressing etc) but also notes taken at lecturers possible physical support in lecturers
 Who is going to pay, the local council from where they originate
 The council to which they move
 The education system they move into?
 Which department has complete responsibility (health, Social Care, Education)

In the past 12 months, the Brittle Bone Society can report that regrettably a significant number of callers experienced delays in receiving benefits and services due to mis-informed professionals across the spectrum.

A great deal of thought would require to be given to the funding:
Funding allocations to local councils would have to be ring-fenced.

Currently the AA/DLA recipient decides what to spend the money on, which is what most of us take for granted about our own money and is also the core principle behind Individual Budgets.  Research show that a lot of AA/DLA is spent on informal care services – paying someone to do shopping, gardening or giving lifts. 

Transferring this would erode these valuable preventative services and the social capital that they create and users enjoy.  The result would be that people might expect local authorities to arrange such things.  Obviously some local authorities would manage this well however some will struggle.

Transferring AA/DLA to social care, (either as services or Individual Budgets), would involve extending control over people’s lives, undermining the philosophy of individualisation and choice and if local councils who have seen certain amount of money previously ring-fenced would no longer have this protection.  Who would decide how to divide up the available money?

3. Funding Options
The Brittle Bone Society has some concerns over the financial implications outlined in the Paper

1. Partnership, this is hugely unfair, those who can’t afford won’t get and those who have saved all their life will loose this
2. Insurance, the people who are poorest will not be able to spend an already low weekly budget on insurance and so won’t buy it putting them at risk. 
3. Comprehensive, this has potential but it could be argued people are paying for the same thing twice. 

Dealing with the Paper as it concerns older people we welcome the fact that the Government has put forward three options for consideration.  Under all three plans, we support the element that the poorest will have their full care package paid for by the state and to prevent people losing their homes when they go into care. 

We also take this opportunity to expressly note the concern that those affected by Osteogeneis Imperfecta and who in many cases require the use of highly specialized wheelchairs – aids and adaptations and equipment which unfortunately is not widely or freely available under the NHS. 

Examples from our own members show that an adult with OI who has some walking ability but needs a wheelchair will often require sizes the NHS cannot provide or fund.  They will be given a wheelchair that is too heavy for them to self-propel easily (putting muscle strain on their shoulders and eventually leading to serious deterioration in their physical health.  Alternatively the Brittle Bone Society and it’s members raise funds to allow the person to have a lightweight wheelchair, this allows them to self-propel more promoting muscle stamina and endurance and ultimately leading the person to be physically healthier and more independent.  Ultimately this will in the long-run be less of a drain on health and social services.

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http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_102338