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Picture 1 Henrietta Spink is the founder of the Henry Spink Foundation and author of Henrietta’s Dream.

My husband Michael and I are the parents of two profoundly disabled boys, Henry (21) and Freddie (18). We are both totally passionate about the boys but the physical, financial and emotional challenge of caring for two such disabled children for the last 22 years has taken its toll. The cost to us as a couple and as individuals has been immense and the strain at times unbearable.

As described in my book, Henrietta’s Dream, we have battled for provision from special education, health and social services, but getting any help has been like pulling teeth.

These issues affect many people and involve large amounts of money: there are 770,000 disabled children in the UK. The 2001 Census suggests that there are 5.2 millions carers in England and Wales. Over £1.75 billion was spent on assessment and care management and £13.1 billion on adult social care by local authorities in 2007-8 across the UK.

As a result we have come up with a few simple cost effective and cost neutral ideas that we believe would deliver a fairer, better run and more humane service for both carers and disabled. We have engaged with politicians from all sides, and a recently-tabled Early Day Motion on these matters has quickly gathered support from across the Commons.

We received almost no help at all from social services until Henry was 12 and the only equipment we had were two plastic mugs and a toilet seat. We received our first respite weekend when Henry was 15 years of age, and still get up an average of three times a night. In law the boys were entitled to assessments and once a need is identified then in law it should be met. The way round this is to ‘not identify the need’ – then no delivery is necessary.

As the boys grew bigger so did their care needs. We begged social services for more help. If Michael was forced to become a prime carer alongside myself, who was going to work and pay the mortgage? A senior social services officer came to our house and said ‘we have no legal or moral duty to keep you in work, when you are on benefits, we will help you’.

We ended up in the High Court trying to get more care hours in our care package. The Judge refused us leave to judicially review our local authority. The Court was not the place to hear detail of care packages, as the process could not put the judge in the shoes of the decision makers, i.e. the local authority.

Yet we have a letter from Liam Byrne (then at the Dept of Health) stating that resolution of disputes regarding care assessments is a matter for the courts and local authority. Catch 22 and nowhere to go.  As a result we lost our house, our jobs, our livelihoods and our well being.

It took several years for us to rally but we did. We decided to look at the system that had failed us and so many others. If there was nowhere for parents and carers to go to get help in resolving a dispute apart from the Local Authority complaints procedure, where the authority is judge, jury and purse string holder – hardly a fair system, and the High Court which dislikes looking at details of care packages. An obvious conclusion would be a social services tribunal. No need to re-invent the wheel, as it could follow the model of the Special Educational Tribunal which falls under the Minister of Justice, so there is no need to add another layer of legislation either.

The recent Green Paper, ‘Shaping the Future of Care Together’, promotes individualised care packages, but omits to mention the resolution of disputes particularly in the context of national assessments and portability of care packages.

Handling complaints relating to assessment and delivery of care packages for adult social care at stages 1, 2 and 3 of the complaints procedure and complaints that went to the courts cost approximately £20 million last year. In contrast, the tribunal service expenditure on running costs was £6.4 million last year in the UK: a significantly less expensive route to justice.

Another key point of the campaign is the portability of care packages. At present we are trapped in Cornwall. My husband’s work is in the South East yet we have we no way of relocating, as to move would mean losing our care package. From our experience a new receiving local authority will not look at an existing care package and this is borne out by a letter we have from Ed Balls stating that the Welfare Bill makes no provision for rights to portable support, and that there is no guarantee about continuity of support, even for a transitional period.

Failure to allow portability of care packages imprisons both carers and disabled alike. This is an illogical restriction, easily overcome by national acceptance of assessment standards. The cost of fully reassessing our complex family is about £8,000. Imagine the cost and time saved if this did not have to be endlessly repeated, even if you choose to ignore the fact that the freedom to move is also a fundamental human right.

When we try to contact Ministers we get passed around from department to department. The system is so entangled it’s hard for a lay person to know who to write to. At various stages along the way, we have been directed to DWP, DoH, DCLG, DCSF, DfT, Cabinet Office, individual local authorities, Primary Care Trusts and the Office of Disability Issues. 

The time has come for the system to be changed for good after the next general election, and if the campaign is successful, it will make a genuine difference to the lives of a huge number of disabled people and their carers. Our reforms, which are cost-neutral or would even save money, would be an important step forward.

20 comments for: Henrietta Spink: Huge numbers of disabled people and their carers would benefit from some sensible changes to care packages

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