Sunday, 16 April 2006

Getting Down to the Nitty Gritty

This is what I loose sleep over the most, this is where I feel the most isolated, this is what I would appreciate the comments of disabled bloggers on.

A few weeks ago this county's Director of Social Care and Health made a statement in the local press, that SC&H were re-considering the eligibility criteria used in their assessments of peoples' need for services - the point at which SC&H draw the line below which no person's circumstances will be eligible to receive a service. It seemed likely that the line would have to be re-drawn, from its current position at moderate level of need, to substantial or even critical level, resulting in far fewer disabled people receiving social services.

'Oh My God, What Have I Done' - was my immediate paranoid reaction, so I checked it out with reality. Onto the county council website to read the SC&H committee meeting reports, yes there it is, December meeting, months ago ...consider raising eligibility criteria due to budget cuts etc etc or words to that effect. Nothing to do with me, stop panicking.

Paranoid ? Anxious and feeling responsible actually because at the time of that press statement, I had written to my MP asking for his help because for three years, without success, I have been asking SC&H to meet my disability needs. After three years I am still waiting for grants for work to make my home wheelchair accessible. My MP had sent my letter to the Director of SC&H. We await his response, but the SC&H committee discussed eligibility criteria and budget cuts months before my letter.

In my letter I had expressed my belief that although SC&H's published eligibility criteria had the line drawn at moderate level, in many areas of service provision, including funding houseing adaptations for disabled people, SC&H would not consider your case unless you were at a substantial or even critical, level of needing a service. Critical as in 'danger of death' it seemed to me.

I had written that SC&H should be honest and straightforward and state publicly (in their information leaflets) that their funding could only meet assessed critical need. Their information leaflets should advise service users of the objective criteria against which objective decisions on their needs were made. Otherwise, in my experience, individual SC&H staff could subjectively decide whether or not they would put the service user's case forward for limited funding, even after objectively assessing that the service user's need met the moderate line of eligibility criteria. Sounds complicated; I have written it three times (and lived with it for three years) and cannot make it any clearer.

In writing to my MP I wanted to highlight that the level of funding that central government allow this geographical county, is shamefully low and does not allow SC&H to meet its statutory duty to provide social services. Now I see it a little differently. Central government funding is shamefully low, but there are also local political influences at county council level that thwart the good intentions (there are some!) of central government policy.

(Bear with me - this is going to be a long one; many disabled people will know what follows, many will not, so skip the bits you already know.)

Elected councillors who sit on county hall committees decide how to allocate the money received from central government and local taxes, to their various budgets (schools, roads, social services etc). The elected councillors who sit on the SC&H committee are responsible for arguing in county hall committee meetings, for adequate funding from the budget, for the services they represent. The elected councillors (elected by you in local government elections) have listened to requests from their officers (employees of county hall including the Director of SC&H), weighed those up against the other elected councillors' arguments for their committee's responsibilities (roads, schools, leisure services etc) and come to an agreement. Local politics.

Which resulted in £X? million, yes million, pounds being cut from this county's social services budget for the year. Did we service users create a fuss, did we write letters to the local or national press, did we bang on our elected councillors doors, did we invade parliament, did we block the main entrance to county hall with placards ? Of course not, we were too tired, too ill, too poor to afford the petrol/taxi to get there, too afraid of rocking the boat, risking loosing what we already had, or shaking the foundations of the reasonably good relationship we had built up with our local office of SC&H, we didn't want to be known as 'trouble' in case it made it worse for our own situation.

Also, possibly another reason why not - do the disable people who are service users of social services know what services they are entitled to receive ? The service users of schools, leisure centres, roads etc, generally do have a good idea of what services they are entitled to expect, but disabled people often do not. The users of social services often rely on information supplied to them by social services, to explain to them what they are entitled to.

I did. Three years ago when I requested wheelchair access in my home, I was told by my then SC&H Occupational Therapist, and the DFG (Disabled Facilities Grant) man from the district council, that I was not eligible for grant funding, and I accepted what they said. On my request for wheelchair access in my home, three years ago I was told - No; two years ago - Maybe; one year ago - Yes; this year - Yes But. That 'but' was a decision by the SC&H funding Panel that went against my understanding of all legislation and guidelines I had read (listed at end).

That is when I wrote to my MP, after reading the legislation, reading the guidelines from Dept of Health and ODPM website (listed at end), applying the Social Model of Disability to considering the restricted life I lead. I wrote to my MP after due consideration. After I had considered whether it is fair and reasonable for my life to be so restricted, not by my medical condition and resulting disabilities, but by lack of money in the budget of service providers, for the services, equipment and adaptations that they had assessed me as needing.

Let me take you back (thank you for your interest so far) to county hall committee decisions on allocation of funds to various service budgets. If £X? million pounds had been cut from other service budgets, say with the result that 1 in every 5 leisure centres in the county would be closed, or 1 in every 10 school bus services cut, the local papers would have had to order in extra newsprint to contain the articles and letters of protest. Yet for many reasons, all understandable, this did not happen when the cut to the social services budget was announced in the press. I think that lack of protest could lead to a belief among people who do not use social services, that there must have been a significant over-funding of social services before, that now could be cut back.

Maybe non-disabled people, and people not needing social services, may have thought the cuts and lack of protest at the cuts, must mean that disabled people can manage without some of those services, and if they can manage without, maybe they didn't need them anyway, so they must have been getting 'stuff'/services they could manage without - if they are managing now without protest, now that the budget has been cut by £X? million pounds. Convoluted reasoning yes, but is that what non-disabled people, and people who have never needed any service from social services, actually think ?

Are we managing without ? No. Disabled people are not managing, we are putting up with or suffering, a lower quality of life than that which legislation says we are entitled to. We are struggling, or giving in, to live in, even being housebound in, inadequate or unsuitable accommodation, because we are not givng the funding to make our own choices on where we live, or given the grans to make our own homes suitable and safely usable. We are afraid of being told to move into modern town centre accommodation, away from our gardens, our communities, our friends and neighbours, but easier to manage by social services or housing association budgets.

People who only know the restricted life I now lead, and didn't know me before ill health and disability, think that I live this restricted life because I am disabled. That is the Medical Model of Disability. I live this restricted life only partly because I am ill, but mostly because without the equipment, adaptations and services I am entitled to, I cannot access the life that they take for granted, on the days when I am well enough to do so. That is my understanding of the Social Model of Disability.

Other disabled people that I have met don't have the home care, personal assistants, equipment, and adaptations that I already have in place, only because they don't know they are entitled to them, or don't have the information, energy or ability to get them for themselves.

I don't have these things because I have money stashed away somewhere to buy them, despite being dependant on means tested and disability benefits. I don't have these things because I am lucky. I have these things because I have the ability, for now, to fight for grants, argue my case, beg for charity (well actually, write polite letters and copy my bank statements). I have these things because, at the moment anyway, I am able to NOT put up with being patronised or coerced or bullied by service providers. I am doing this because I can, other disabled people may not be able to. I am doing this because the service providers may then think twice before patronising, coercing or bullying other service users. I am doing this while I still can. I may not be able to do all this in five, ten years time. Before my medical condition degenerates to that stage, I want to help ensure that the way services and funding are provided, are fair, equitable and implemented to legislation and government policy, and reliably in place and documented and guaranteed. I want all this before I am too ill, incoherent, disabled, to be able to still fight on. I don't know what will happen to me in my medical conditions, but I have to proceed on the basis of a worse case scenario, in case the worst happens. It will be too late to start moaning then !

So I have been 'quietly' getting on with my own case. I have not organised protests and I no longer join committees (in my experience they are dispiriting at best, damaging at worst). I have used my past experience in local government, employment law (to understand the logic of legislation) and psycho-dynamics (in basic terms, why is s/he doing that - what's their game ?). I have tried to push my own case forward for three years.

Now I am feeling vulnerable and isolated, so I publish this on my blog and hope it reaches beyond my laptop to empathetic others. I offer my conclusions, reached from my own experience, which may or may not resonate with yours -

1 The Social Model of Disability is the foundation of all. That is not accepted by some funding providers who act as if The Budget is all. Add to The Social Model, the Human Rights Act as well, and really 'they' have no excuse for that attitude. But they have the power, so until they are forced to accept the letter and the spirit of the legislation, they often act unfairly. Their actions affects the quality of our life, our physical and mental well being, and our inclusion in those aspects of the society of which we are members, that we want to be able to participate in.

2 The easiest way for employees of SC&H to keep their jobs and sleep at night, is not to push the elected councillors to push the government for more funding, but to push the services user to accept less that the law says they are entitled to. Put pressure on the weak and powerless (the service user) rather than put pressure on the strong and powerful (the elected councillors). There are notable, honorable and admirable exceptions among SC&H and local government staff at county and local level. They give me hope and I work with them where I have found them, and there is mutual appreciation, support and understanding of the difficulties the other is dealing with. However, they are paid to support me. I am using my limited energy and resources without pay.

3 The employees of SC&H - from the bottom to the top, from the OT and Care assistants right up to the Director of Service, cannot change things alone. Probably only the elected councillors can make a real difference, by making brave sustained representation to central government. As disabled people and service users, we can help them to change things. If we can or are able to, then we should talk to our district and county councillors who we have elected, if possible before the May local government elections. If we can or are able to, then we should try to work for change within the existing framework, by working with those service providers; the OTs, Care Managers, Social Workers, local Team Leaders, who do try to support our need for services - and insisting on our rights, when we have the ability and energy to do so. If we can, we should find out what our rights are for ourselves, not only rely on social services' publications. Those local government employees and social service providers that are brave and independent within their profession, should make representation through their line managers, to their Director of Service's office. The Director could then provide the case histories and statistics within SC&H service provision, to enable the elected councillors to make representation to central government, through their representative MP and through their professional associations. That is my understanding and idealised view of how it could and should work for change.

4 There is a 'post code lottery' in funding for social services and grants for disabled facilities. What services, equipment or disabled facility adaptation is funded in your geographical county, may be different to that provided and funded in your neighbouring county, or next town or village. That enables a 'divide and rule' situation to exist, so that national and local campaigns by disabled people are thwarted, as disabled people from one county, district or town, get more or different help, services and equipment, than disabled people in other counties, or the next town.

5 Therefore, there are more likely to be campaigns by disabled people on issues that are the same throughout the whole country, such as mis-use of disabled parking bays, winter fuel payments (thank you 'Disability Now' magazine), than on quality of life issues, such as wheelchair access in the home, or even getting a wheelchair in the first place. Using wheelchair provision as an example; the issue is further complicated by wheelchairs being funded by the NHS (only indoor wheelchairs, not outdoor wheelchairs), wheelchair access ramps funded by district council mandatory Disabled Facilities Grants, and any necessary assessed eligible room extensions for wheelchair access and disability equipment, by SC&H discretionary grants or loans.

6 All disabled people who want to, should be able to access support, information, training and representation, in the social model of disability, in the legislation that governs their lives and the provision to them of services, and in what quality of life and level of social care and equipment and medical services and equipment, they have a right to expect and demand. Then there would be an ever widening circle of independent disabled people who know how life should be, and know how to help make it happen.

'Hate Something - Change Something - Make Something Happen'


A - Department of Health 'Fair Access to Care Services'
(1) Guidance on Eligibility Criteria for Adult Social Care.
(2) Practice Guidance 'Implementation Questions and Answers.

B - Office of the Deputy Prime Minister 'Delivering Housing Adaptations for Disabled People' A Good Practice Guidance. November 2004.

C - Disability Rights Commission. 'The Disability Debate'
(email: Lord Ashley's Independent Living Bill' February 2006.

D - 'Hate Something, Change Something, Make Something Better' advertising jingle and film

E - 'Disability Now' magazine

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Blogger dotandcarryone said...

It seems to me that we are witnessing not just the disintegration of the DDA, but the dismantling of the welfare state itself.

Opticians are almost entirely out of it; dentists are following; and reports of the way in which some GP practices are restricting access to their services makes me wonder, how long before they are next?

Once the medical services have been made unobtainable, I suspect the social services will follow. Bread and circuses - entertainment, in other words, will be maintained to keep the masses happy.

Disabled people are such a cross-section of the community that it is difficult to see them working together on this, expecially as well as being cross, they are also riven by faction: one kind of deaf individual against another, Deaf, one; the young against the elderly, and so on.

I live in Dorset, which is a poor, and for a long time, starved of funds, part of the UK. Inner-city is where all the trendy funding goes, now. Look at what has happened to North Dorset Council when trying to maintain its services: capped by the government for overspending.

Sorry, I'm feeling a bit pessimistic about the whole thing.

Monday, 17 April 2006 at 10:45:00 BST  
Blogger Sally's Life said...

Dear Dotandcarryone

Thank you for responding, I note you live in North Dorset - the press statement I referred to from the Director of Social Services appeared in the Blackmore Vale Magazine, your local excellent free weekly.

I understand your pessimism .. and I have not begun to blog about dentists and opticians .. another day.

I hope The Goldfish's Blogging for Disabilism day will inspire more optimisim within the disabled community ... there is energy and optimism out there to be joined in with, to work for change within 'the system' so that in say ten years time, there will have occured a huge change, such as is beginning to evolve through the DDA. Lord Ashley's bill is also optimistic, and realistic on the timescale for change.

More comments welcome

Monday, 17 April 2006 at 12:34:00 BST  
Blogger The Goldfish said...

To be honest, I had been aware of these changes, but I until reading your experiences I hadn't registered the extent of the damage. Of course these cuts effect the most vulnerable disabled people; people who, without the help they are entitled to, need every ounce of their energy just to survive.

It also goes against all that rhetoric about helping us to work and looking after those who cannot; for some people hobbling on and managing work part-time, this is going to put an end to that. The first example of such a person that springs to mind is a research fellow at a university; another important contribution will be lost.

I'm glad you have high hopes for Blogging Against Disablism. Certainly this at least gives some voice to those of us who really aren't in a position for vigorous 'activism'.

Monday, 17 April 2006 at 14:50:00 BST  
Blogger Charlesdawson said...

I recently attended a meeting with a Dorset Help&Care, on behalf of the local charity I work for.

The officers are nice people, and they have worked hard to build up as comprehensive a service as any, but they seemed to feel absolutely helpless about the cuts which have been imposed. So do the local elected representatives; it's all coming from the top, ie, London.

I suppose one could approach the local MP, but if this is what is being done to us by New Labour, what hope can we have of the local Conservatives, especially as these rural seats are the safest seats anywhere.

Monday, 17 April 2006 at 16:49:00 BST  
Blogger Sally's Life said...

Thank you Goldfish and Charles for your responses .. much appreciated.

Goldfish - my experience relates to my county of Dorset (yup, rural Dorset, a lot warmer than Up North !) and funding in other counties is better, or worse, and social services attitudes in other parts of the country are worse or better - how is it in your county ?
The cuts in Dorset are not (I am promised) retrospective, but mean that from now on it will be more difficult for everyone.
I have never been able to participate in physical demonstrations, and believe the power of the written word is mightier than any sword, or placard.

Charles - thank you, I am trying to be optimistic, and act optimistically, and my experience of my MP is positive, he has a personal interest as a close relative died of the condition I have, Lupus. Also I know from what a friendly mole told me, that the Director of SC&H, new to the county 3 years ago, is not happy, but he is tied by what his employers want, so its the elected county and district councillors who we hve to make aware of the damage cuts do to our lives. If we don't let them know, they will think its ok to cut £Millions from the social services budget.
I think it is in our hands, the volunteers, the service users who can, to give our MPs, service providers, elected councillors, all the facts, and push them to make change happen. Yes you are so right, it comes from the top, funding is down to taxation decided by the government, and as a born and bred socialist, it frustrates me that a labour government has brought this situation about, but we have to make ourselves heard, have to educate people who think life is ok for us, who think we have enough to live on, who think we are managing, or who think we should not expect any better.

A plea - please can someone send this cogdysfunck'd crip some really really simple instructions, on how to put links to your blogs on my page ! I can type fast, and write long letters, but learning new skills, even those that seem simple to you, takes me an age.

Thank you fellow bloggers

Monday, 17 April 2006 at 17:28:00 BST  
Blogger Charlesdawson said...

Sally, if you go to Blogger Help and click on the link "How do I edit my Links?" it will give you directions.

If your Template is anything like mine, the Links section will be towards the end of the text.

One tip: take a copy of the text of the Template and paste it onto Notepad and save it to disc before you do any editing!

Monday, 17 April 2006 at 19:03:00 BST  
Blogger The Goldfish said...

I don't know about my own area. I am fortunate enough to have a partner who is about most of the day, so it's not something I have had to look into. And I must say I don't know any other similarly disabled people in North Yorkshire (i.e people who would need significant help)

The university acquaintance is in Hampshire, but from what I've gathered they were always particularly bad when it came to this sort of care provision.

Code to put links on the sidebar is

<a href="[the full URL]">[name you want to see]</a>

So for example, my link to you is

<a href="">Sally's Life</a>

If you want to make them a list with bullet points you need to write something like this.


<li><a href="[the full URL]">[name you want to see]</a></li>
<li><a href="[the full URL]">[name you want to see]</a></li>
<li><a href="[the full URL]">[name you want to see]</a></li>


Remember always close a tag that you have opened. That is if you write a <i> to italicise something like this then you must close it with </i>

You can also use this code to put links in posts and comments (I used special characters to show you so that it didn't automatically convert to a real link.)

Hope that helps :-)

Monday, 17 April 2006 at 19:21:00 BST  
Blogger Sally's Life said...

Dear Goldfish and Charles

Thank you both for your patience and explanations. I will now try and be brave and do it ... (Jung I read, understand and apply, Spike Milligan's jokes I have no problem with, but confidence to leap out there into trying this ... hopeless !

Dear 'dotandcarryone' - hope these explanations help you with your problem too.

Monday, 17 April 2006 at 21:58:00 BST  
Blogger dotandcarryone said...

Dear Sally

The instructions worked! Sorry, Goldfish, I don't mean to imply that you would give bad instructions, just that I am amazed whenever my computer works right.

Sally, one tip: I copied the sample line "editme" and saved it so that it will be available to be pasted in and altered whenever I want to add a new blog. I don't trust my memory to remember it!

Tuesday, 18 April 2006 at 09:35:00 BST  

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