LETTER: Government sees 'my amazing disabled daughter as a burden on the economy'
PUBLISHED: 10:45 18 December 2019 | UPDATED: 10:59 18 December 2019
A consultation by Cambridgeshire County Council over the way adult social care is paid for has just ended.
When the council reviewed its charging policy two years ago it made no changes at that time.
But they say that since then the financial situation has changed and the pressure on the adult social care budget is increasing. Five changes are proposed to the social care charging policy.
The changes could have implications for some disabled who may have to find an extra £28.95 a week.
One reader explains what the implications will mean for her and how the changes could affect her daughter who has learning disabilities and autism.
I am responding to the questionnaire/consultation on proposed changes to the council's adult social care charging policy, which was sent to my daughter.
My daughter has a learning disability and autism. She gained a limited understanding of the proposals from the questionnaire.
Other than feeling extremely anxious about them, she does not have the ability to be able to respond fully herself, so I am undertaking this on her behalf and with her consent.
Firstly I would like to praise the person responsible for the format of the questionnaire.
It is extremely rare that a person with a learning disability receives written communication that has been designed to enable them to understand its content i.e. the use of pictures, simple language and short sentences.
Other organisations, in particular DWP, have much to learn from this.
It would seem that the Government gives with one hand and then finds ways to take away with the other.
I have to question what it says about a society and those in power who would call upon its most vulnerable to help plug the gap in social care funding, particularly when research has shown that those with a disability are twice as likely to be living in low income households than able bodied adults.
Where is our humanity and why are we not troubled by such inequality.
My daughter receives some social care. She is in receipt of ESA and PIP benefits.
Benefits go down every year in real terms, never keeping up with inflation, and at present ESA has been frozen.
We are told that this is to incentivise people to work, but what about those who are genuinely unable to work; is it right that their benefits do not keep pace with inflation or are frozen, through no fault of their own?
It has been documented that spending on social care is lower now than in 2010.
The number of adults with a disability receiving care has fallen despite an increase in the number of requests for support; leaving unmet needs and further reliance on unpaid carers.
Such is the gatekeeping within social services, raising the threshold and restricting access to social care.
For many disabled people, including my daughter, assessments do not accurately reflect their needs and care and support plans do not meet all eligible needs.
The percentage of unpaid carers, satisfied with the support and services the person they care for receives, is declining and the number of complaints to the LGO have trebled since 2011.
My daughter attends a supported work placement one day a week and receives two hours of home support twice a week; her unmet needs for the remainder of the week fall on me.
At 62 I really struggle to continue working until I can retire, as well as practically and emotionally supporting my daughter on a daily basis.
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My greatest fear is knowing that one day I must leave my daughter alone in this world, realising that without me, life will become even more difficult and overwhelming for her.
The world she lives in demonstrates every day that it has no desire to include her, engage with her or treat her as an equal. At best she is ignored and at worst she is ridiculed and bullied.
My amazing, kind and gentle daughter, who cannot help being born disabled and who could teach us so much about fairness and generosity of heart, is simply being seen as a burden on the economy by the Government.
I acknowledge that other local authorities are charging adults with disabilities for their social care.
Given that this is happening in other areas I find it most concerning that lessons have not been learned from this.
Especially when it is known that this practice has placed pressure and hardship on people, who are faced with having to choose between basic necessities and deciding which of their needs must go unmet, because they cannot live on the minimum income guarantee.
This has led some people to reducing the much needed social care they receive. Analysis by GBM shows that more than 160,000 people have been thrown into debt following local authorities imposing costs for social care.
The questionnaire states that the Government have given local authorities the power to take money from a disabled person's PIP (care component) up to the point of the minimum income guarantee.
DWP have calculated that my daughter can live on £128.45 a week which is her minimum income guarantee.
Had she been born without a disability she would have had the capacity to earn at least the guaranteed minimum wage - £8.21 per hour X 40hrs = £328.40 per week.
ESA leaves her with a shortfall of £199.95 per week compared to an able bodied person with the ability to work; leaving her below the poverty line.
Add to this her housing benefit shortfall of £127.92 a month and it is clear that it is just not possible to exist with any quality of life on the minimum income guarantee.
People with a disability also have additional costs to meet because of their disability, for example my daughter needs to pay for a community alarm to keep her safe as well as additional costs associated with continence management etc.
Disabled people, unable to work, are dependent on long term and inadequate benefits such as ESA.
It is well established that long term, persistent poverty is especially damaging, impacting on physical and mental health, creating social exclusion, depression, anxiety, hopelessness and even increasing the risk of suicide.
We are all well aware of people trying to exist on benefits experiencing food and fuel poverty as well as being materially deprived, lacking necessary items, with too little money to be able to save they are unable to replace household items when they break down.
Yet despite the findings of the GBM and knowing that the minimum income guarantee is inadequate and deficient, Cambridgeshire County Council are considering reducing disabled people's income to a point where they will be living in poverty and deprivation.
As if life with a disability was not hard enough.
For the following reasons I do not agree with imposing costs for care:
The care provided to my daughter does not meet all her needs. There are four days a week (57 per cent of the time) when she does not receive any support from social care. Her PIP payments are awarded for all her care needs, seven days a week, including unmet needs and needs that are outwith social service's inflated threshold of eligible needs.
The minimum income guarantee is deficient and places people in poverty with all that is associated with such deprivation and the Council should not use this as a point to reduce income to.
The findings of the GBM should not be ignored and more robust research needs to be done to identify the effects of charging for social care on people's quality of life, before more Councils take this step and reduce people with a disability to living in poverty.
Looking to disabled people who are unable to work, to help plug the gap in social care funding perpetuates inequality in our society. Surely people go into politics to redress inequality and not perpetuate it.
Local councillors need to be a voice for the disadvantaged and petition Government to increase the minimum income guarantee in line with real inflation, or more equitably, in line with the minimum wage guarantee, which they would receive if they were non-disabled.
I have paid taxes all my life and would gladly pay more to help care for the most vulnerable in our society, if this were ring fenced and used solely for the delivery of social care, free at point of need, because 'there, but for the grace of God, go I'.