By Raya Al Jadir New research will investigate the “untold stories” of disabled lesbian, gay, bisexual and transgender (LGBT) people in the social care system. The study will explore the experiences of LGBT disabled men and women who use direct payments or personal budgets to fund their social care. It has been launched by the disabled LGBT organisation Regard, the gay rights charity Stonewall, the Norah Fry Research Centre at the University of Bristol and the Social Care Institute for Excellence (SCIE). Dr Ju Gosling, co-chair of Regard, said: “We know almost nothing about the use and experiences of using social care support by LGBT disabled men and women, because to date no-one has asked. “This is despite the fact that as many as one in three LGBT people are disabled. “We are also disproportionately represented among social care-users, because we are less likely to live in the area we grew up, and less likely to have children and family members to support us, than other disabled
This is how it should be, except timing of care visits, even with an agency covering visits, as Direct Payments can be used, not only to employ your own PAs, but to instruct an agency of your choice, provided the hourly rate is agreed by Social Services, to provide your care.
When having your Assessment of Needs the support plan should include all these areas.
However, I do agree that employing your own PAs gives you some more freedom of choice, but then you are required to follow all the employment regulations as you are then an Individual Employer.
May you always have the care you need.
I had such a lovely time last week. I got to be a grown-up, which doesn’t happen very often, and it was so wonderful!
Confused? Let me explain.
As a severely disabled person there are many things I cannot do for myself. I can’t walk, I can’t get dressed by myself, I can’t wash myself, I can’t make a meal, I can’t even make myself a cup of tea if I want one. I have to rely on someone else to do everything for me.
Now, before my medical condition deteriorated slowly and inexorably in 2014, I was perfectly capable of doing all that needed to be done either on my own or, if necessary, with the assistance of my, now adult, children. I went out to work full-time during the week, looked after my own family, visited friends in the evening, was a lady who lunched at the weekend…
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Three disabled people are taking legal action against a council that has banned them and other service-users from continuing to use a disabled people’s organisation (DPO) to support them with managing their care packages. It is believed to be the first case in which service-users have sought a judicial review under the government’s new Care Act 2014. All three claimants – Haydn Collins, Jenny Bolland and Slade Holmes – have been using Direct Payment Service Users (DiPSU) to support them in managing the direct payments allocated by Nottinghamshire County Council to fund their care and support, and say the DPO has provided them with a high quality service. But the council claims that a long-running probe by its own trading standards department, including, more recently, allegations of fraud against DiPSU, makes the organisation unfit to be providing services to hundreds of service-users across the county. DiPSU, which has been running since 2003, insists it has done nothing wrong and that
Nearly half of disabled people receiving care and support from their local authority say their quality of life has fallen in the last year, despite major new legislation designed to boost their well-being, choice and control.
The survey of 399 disabled people was carried out by the Independent Living Strategy Group (ILSG) – some of whose members were part of the independent living movement in the 1970s –as part of a report assessing the impact of the Care Act 2014 on choice and control.
The group was set up by a broad range of disabled activists and disability organisations concerned about the potential impact of welfare reform and cuts to public services on independent living, and the government’s failure to follow through on its 2010 pledge to monitor the implementation of Labour’s independent living strategy.
Their report was funded and published by In Control, the charity which helped develop the idea of personal budgets*.
ILSG members wanted to find out how local authorities were following “the spirit and letter of the Care Act and its statutory guidance in seeking to optimise choice and control”, which they say is “fundamental” to the Care Act’s “core purpose” of helping people achieve the outcomes that matter to them.
More than 45 per cent of those surveyed said their quality of life had reduced over the past year, including 18 per cent who said it had fallen significantly.
Almost 30 per cent said they had experienced a reduction in choice and control over their support in the past year, while only eight per cent said it had increased.
And nearly 30 per cent of respondents said restrictions had been placed on their use of direct payments or personal budgets.
The report warns that social care spending by local authorities had already fallen by £4.6 billion from 2010-11 to 2014-15 – a real terms cut of 31 per cent – while the government’s imminent spending review had “opened the door to even deeper cuts in the years to come”.
Some councils have introduced restrictions on how disabled people can spend their personal budgets, such as banning them from using them to pay for gym memberships, or for personal assistants to accompany them on outings.
Others have imposed a “cost ceiling”, which means the council will pay no more for independent living than the cost of a residential care placement, despite Care Act guidance making it clear that such practices are unacceptable.
The report calls on central government to ensure that funding to local authorities is “sufficient to enable them to meet their statutory obligations as a minimum, let alone the broader goals and aspirations of the Care Act in respect of prevention and well-being”.
But it also says that there are many things councils can do, “irrespective of their financial position”, to promote choice and control and “strive to meet the letter and spirit of the Care Act 2014”.
Jenny Morris, one of the report’s authors and another ILSG member, said the survey results were “very shocking”.
She there was a “yawning gap between the welcome principles of the Care Act 2014 and what is actually happening to older and disabled people”.
She said: “The whole value system behind personal budgets is incompatible with the massive reduction in expenditure on social care which local authorities are facing.
“There are some local authorities where a significant proportion of social workers and managers are not signed up to the choice and control agenda, but any progress is being made almost impossible by the massive reductions in the funding available.”
She said: “Personal budgets were supposed to enable everyone who needed social care support to have the kind of choice and control that was previously only open to those receiving direct payments.
“Instead, they have been rolled out in the context of a major financial crisis facing adult social care, and the result is not only a reduction in choice but also a decrease in the quality of people’s everyday lives. This is the government’s responsibility and they must act.”
She said ILSG would continue to monitor the state of independent living, including through future surveys.
And she called on councils to “make it clear to government that the current financial climate is incompatible with what they are required to do, according to the Care Act and the statutory guidance that accompanies it”.
Sue Bott, deputy chief executive of Disability Rights UK, added: “Local authorities might argue that it is early days in the implementation of the Care Act, but if you don’t start as you mean to go on then the spirit of the act will never be implemented.
“This report demonstrates, and the calls to our advice line also show, that disabled people are being denied choice and control over how support needs are met and that independent living is being fundamentally undermined.”
*A personal budget is a sum of money allocated by a local authority to meet a person’s care and support needs, while direct payments allow a disabled person to take such a care package as a cash payment
News provided by John Pring at www.disabilitynewsservice.com
When the relationship between a disabled person and their assistant works well, it can be fantastic. When it doesn’t, it can be disastrous, says Rupy Kaur.
I first became an employer at 15 during my GCSEs – an additional stress most young people don’t have to think about. I needed to take on a personal assistant (PA) to help me with daily care tasks like dressing, going to the toilet, preparing meals, and also doing admin. I have cerebral palsy, a neurological condition that affects my movement.
Under a new widely welcomed scheme that started in 2001, the council gave me money to recruit my own assistants – they weren’t allocated to me by the local council. Although these direct payments gave me the choice and power to hire and fire, at that age I had no idea how to recruit a good PA.
I didn’t know what to ask them at interview stage, how to write a contract or legally protect myself, let alone how to pay them. But I now had that responsibility.
The council helped me find a few contenders but, due to my lack of experience, the only question I really wanted an answer to at the interview was whether they would feel comfortable wiping my bum. When they answered yes, I thought it was enough evidence to show me they were suitable for the job.
During my time as an employer, I have worked with many PAs – on average 10 a year. There have been some ups and downs. A few PAs caused me problems. They were often late, ignored my needs, talked about how drunk they’d been over the weekend and about intimate details from their personal lives.
As it was the only way that my personal care needs could be met, I went along with it. They were the people I was relying on when I was at my most vulnerable. They were my hands and legs, and it felt like they were the ones who were in charge. I certainly did not feel like an employer.
Incidents included writing their own cheques for payment and exaggerating the hours they had worked. Cheques would also be signed on my behalf. I felt I had no support to manage the situation and was relieved when they left of their own accord.
I’ve had PAs who have stolen from me, played games on their phones when they should have been writing my lecture notes, let me down at the last minute… the list goes on.
Two insisted on working in a pair, which meant my budget was eaten up more quickly than it should have been, so I didn’t have enough funding to cover extra shifts.
But I look back now and realise that these negative experiences have made me more resilient and a better employer.
I now have an accountant that manages payroll, have sound legal contracts, and I am ruthless when I am hiring. I have compiled a 15-page handbook for my new employees to read – not because I’m fussy, but because I have complex needs that would take months to explain. It’s just easier this way.
I have managed to recruit PAs over the years who match my personality, understand my needs and who have become friends while still understanding the boundaries.
For me, a PA is what it says on the tin. I need assistance in order to live my life the way that I want to. I don’t need a carer as I don’t need caring for. I am an autonomous person with the capacity to make my own decisions, and I need somebody who is able to assist me to achieve my goals.
Wanted: A Very Personal Assistant is part of the BBC Three Defying The Label season about disabled people. Catch up on the iPlayer attp://www.bbc.co.uk/programmes/b063j9hx
The report The Other Care Crisis is published by Scope, Mencap, The National Autistic Society, Sense and Leonard Cheshire Disability. The leading disability charities are concerned that the debate about social care reform has focused on the needs of an ageing population and sidelined the thousands of disabled people under the age of 65 who rely on care in everyday life.
All persons should be able to expect a reasonable standard of living and a social life, while for most of us, this will be reliant on ourselves to fund all of this by gaining employment and then organising our spending budget accordingly.
But there are persons within all communities for whom this is impossible or extremely difficult. Here I am referring to persons with a disability for whom the prospects of employment are not possible, or can only be gained by some considerable effort. For many persons, their only or main knowledge or involvement with people with a disability, will be academics who are disabled like Stephen Hawkins or the athletes who are disabled like in the Para-Olympics.
But, I am afraid these people are in the minority, there are many disabled persons for whom, none of the above is possible, even some basic employment may not be possible. The only income these people with disabilities will have, come from State Benefits, provided they are lucky to live in a country which provides these benefits. I say lucky and perhaps, this is not the correct word, because no matter how it is reported in local and national media regarding benefit fraud, State Disability Benefits are not easy to obtain, especially in the current financial climate. Please also bear in mind that these benefits are only to provide a reasonable standard of living, what ever reasonable means. Is reasonable another way of saying standard or average?
The report mentioned above ‘The Other Care Crisis’ is focused on the situation in the UK, where the provision of these benefits are from Central Government agencies, mainly connected to the Department of Work and Pensions (DWP).
The current benefits are:
Disability Living Allowance (DLA) is a tax-free benefit for disabled children and adults – what you’ll get, eligibility, applying, Personal Independence Payment
Disability Living Allowance (DLA) is paid at different rates depending on how your disability affects you
Carer’s Allowance is money to help you look after someone who needs to be cared for – eligibility, apply, claim for DS700
Employment and Support Allowance (ESA) money if you can’t work because of illness or disability – rates, eligibility, apply, assessment
Access to Work is money to help you do your job if you have a disability or health condition – eligibility, how to apply
Attendance Allowance helps pay for your personal care if you’re older or disabled – rates, eligibility, apply, claim form AA1A
Apply to become an appointee for someone claiming benefits – how to apply, stop being an appointee
But DLA is for 16-64 years olds, to be replaced by Personal Independence Payment (PIP) from April 2013 for new claimants, with existing DLA claimants being contacted over the next 2-3 years.
But as stated above, if your only income is State Benefits and these are cut, this is bound to affect your standard of living. If, this was only reasonable to start with, then what will it be called. If reasonable is standard or average, then is this bringing the funding down to provide a sub-standard of living or below average?
If you feel this is unreasonable you can contact your MP by following the link
In addition to the State Benefits, a person with a disability may be entitled or may be in receipt of a care package from their Local Authority from funding provided by Central Government. This will be in the form of Direct Payments from a Personal Individualised Budget. An individual will be expected to make a contribution from their own income towards their budget. These Direct Payments are not additional general income, but are there to pay for the costs of care, which have been shown to be required from the Assessment of Need and the resulting Support Plan. The Assessment of Need will be undertaken by an assigned Social Worker and the Support Plan from information in the Assessment will be prepared by either the assigned Social Worker or an assigned Support Planner. The Support Planner could be either employed by the Local Authority or from an independent organisation.
But due to the current financial crisis in the World and especially the UK, all Local Authorities have been directed by Central Government to make savings from their spending. This is not only for this year, but from the last few years and also for some years to come. All persons in receipt of a service from a Local Authority are effected, not only those receiving benefits. So, not only could your sole income of State Benefits be cut, but Local Authorities will also be tightening their own eligibility criteria for entitlement to Direct Payments. This will further affect your standard of living.
Should this essential spending, even be subject to cuts?