NHS England Survey

NHS England have a survey
for people with learning disabilities, their families and support staff. They want your experiences of complaining about socialcare, health and education.

Prime Minister for a day

If I was PM for a day I would:-

* Scrap Universal Credit and continue the old system of seperate benefits.

* Take the points system out of sickness benefits like ESA. If you are sick you are sick thats enough, there is no right or wrong sick. GPs not professionals who don't know claimaints would decide if someone was able to work. No 2 tier payments, the same rate for  everyone.

* Scrap PIP and return to DLA, so that all needs are considered, not selected ones.

* Provide a social care system that treats people as people with rights and real life choices.

* Make return to work  support for everyone supportive and person centred, not threatening. Give the person control
And responsibility for their own programme.

* Ensure that any empty building was used to provide housing for homeless people.

* Ensure all tax due is paid and that the money and any penalties are used to properly fund public services.

* Keep public services public. No private companies should be allowed to bid for contracts.

* Scrap the 2 child limit and rape clause for benefits.

* Ensure everyone has timely access to free health care when they need it. Improve staffing levels and pay  within the NHS.

* End the benefit freeze and punitive sanction regime.

Disability rights myths, or what the Conservatives tell you

Myth Disability Living Allowance is self assessed by claimants with no checks.
Fact Decisionmakers decided all claims advised by healthcare workers. DMs chose whatever evidence they need to decide. This could be a report from a professional involved in the claimants care or a medical by a DWP appointed professional.

Myth Personal Independence Payment is targeted at those who need most help.
Fact Based on a points system it cherry picks the needs it includes. Changes in the rules mean many with significant needs, lose out because they don't have the right needs. Many get less help than under DLA.

Myths Relatively few claims for PIP are appealed.
Fact Appeals are  at record levels. Currently around two thirds of appeals succeed. This seriously  calls into question the claim decision making process.

Myth Disability and sickness benefits were changed to combat fraud.
Fact Fraud for these benefit is around 0.5 %. Much higher  for Housing Benefits and Working Tax Credit. DWP inflate stats often for benefit fraud by including official error. This idcwhere claimants gave the correct information and DWP paid the wrong amount.

Myth Disabled and elderly people get free social care.
Fact There are savings and income limits before any help with cost is given. Care needs are assessed and only eligible needs met. Means tests are carried out, most people contribute to the cost.

Myth Disabled people get free cars.
Fact People on the  higher rate mobility component of DLA/PIP or the forces equivelant can lease a car using their benefit. Its either the car or the money. Cars have advance payments that must be paid, and any adaptions must  be paid for.

Myth Disabled people don't pay rent or council tax.
Fact Housing Benefit/Local Housing Allowance rarely meets the full cost, and not everyone qualifies. Most people under 65 now have to pay some council Tax, if they get any help.

Myth Disability related equipment is free. Fact Whats on offer if you qualify is limited and there are long waits. Most people have to buy to get what meets their needs. We often pay luxury prices for essential items.

Myth DLA/PIP meets the extra costs of disability.
Fact It comes nowhere near for many. Transport a big cost for many, special clothing, footwear, prepared food if you can't cook, or special diets. Equipment that you can't have free, contributing to care. Meeting the cost of activities you have to have someone with you, LAs won't usually cover that, and more. The money runs out long before the list does.

Myth Disabled people have their bills paid. Fact Anything we owe, and its pretty much the same as anyone else plus disability costs comes out of our income. Benefits if we qualify, vary on circustances, most struggle to make ends meet.

I take my rights

As The British Survey of Social Attitudes shows more people think disabled people need more support I ask if they understand that we need not passive protection but our rights back? We don't need looking after but to be empowered.

The Government want disabled people to be full participants of society. I agree I want that too. I want to take an active part in society, to be able to choose to study or volunteer, if I want to. I want to have a social life, I want to be able to pay my bills without worrying. I want those who can work to be able to do so, not by force but by being given real choices that empower them I want disabled pople to able to choose where and how they live in the same way as anyone else does. I am not asking to be given these things as a favour, I'm claiming rights I have in law, the right everyone has to live life on their own terms. These are human rights and disabled people are human beings too.

To be able to use these rights disabled people need support and that has been stolen from us by The Government. Cuts that have taken our benefits have reduced our imcome so that many people can no longer make real financial choices. These changes are not because as the Govenment wants you to believe, we aren't as disabled as we claim, or so they can support those more in need. It is just because they can. Its not even because there isn't the money. The government find money to support the rich, we pay the price. It isn't possible to participate in society if keeping your home or buying food is a challenge you cannot meet. It costs more to live with a disability than to be  non disabled and the income aimed at meeting those needs often doesn't and many are being denied this at all under new rules. Cuts take away our rights.

Many disabled people need support to do daily activities, from the basic getting up and eating, to going out and being part of our community. The law says we have the right to this but the government have taken it away. The reality is that many have no support at all or so little they have to choose between eating and peeing. Without support we cannot have the lifestyle of choice other people we are denied that right.

Rights theft thats what the Government are doing. Whatever they say its nothing more or less. Its not targeting support, its not stopping fraud, disability benefit fraud is less than 1%, some other benefits are significantly higher. They are not tackling equality, giving us rights or helping us be part of society. Their actions do the exact opposite on all counts. They claim they want to support us, I don't want what passes for support on their terms, I don't even want to be given my rights that will have Tory conditions attached, not the same as rights in law. I want to be empowered to live as I choose. I take my rights, they are mine to take, not theirs to give.

Blog based on a conversation with Neil Crowther via Twitter.

Carers must be cared for too.

A carer commited suicide, his inquest was last week. He could no longer cope with the stress of caring. I ask who cares for carers?

Unpaid carers, usually family members provide support for elderly and disabled people, they save public money because often it cuts the amount of formal support the person they care for needs. They themselves may have health issues, be disabled or elderly but are they properly supported?

Carers allowance if they qualify, perhaps topped 12up with means-tested benefits, often not. Carers Allowance is around £62  per week, not enough to live on, to qualify among, other conditions carers must care for at least 35 hours a week, many are doing far more, many are on hand and care much of 24/7. Some are called for Work focused interviews to 'prepare' for work, its planning what they could do to go back to work  It totally ignores the fact that another person relies on them, and adds to the stress of their role. For most working is neither practical or possible. Some work alongside being a carer.

They may be offered respite, a break from caring, this could be a few hours, or the person they support may have an overnight stay somewhere, one or several nights at a time. Carers are entitled to a social services 11 assessment of their own needs, and a support plan. Cuts mean most don't get enough provision, if any, and it usually isn't flexible enough to give real choice about when they get a break.  In addition not enough funded support  for the person needing care adds to a carers responsibilities. 

Many areas have support groups or other provision for carers, often provided by charities but lack of funds has forced many to close or reduce what they offer.

Carers are a valuable resource but their value is not respected by this Government. If carers didn't carry out their role it would cost much more to provide the replacement services. If carers are themselves in crisis then they cannot continue and emergency provision often costs more than standard care, and may not meet all of someone's needs. It is short sighted and reckless not to provide a proper income, flexible resipite and emotional support to carers because it puts them and vulnerable people at serious risk of harm.

Story source Huffpost

Care homes not the only option

We have an aging population and because people live longer more people will need care for longer. So the answer is thousands more care home beds then, not only for the elderly, but for disabled people needing care, easy problem sorted

No, over use of care homes institionalises people, may mean they lose independance quicker, their health may suffer, and they become isolated from their communities.

What do we need? First lets not forget they are people with rights and choices. Most people if they could, would stay at home but to do that we need a responsive care service to support people at home with enough flexibility to support lifestyles of choice, rather than the fed and watered, essentials only approach many care packages are reduced to. Its not acceptable that people have to choose between eating or using the toilet, or that people don't don't ask for help for fear of being forced into homes. This fear culture of care needs to change because far from supporting people it puts them at risk.

If someone needs or chooses to go into a supported setting, it doesn't have to be a traditional care home. Group homes where less care may be available but the companionship and peer support are big advantages. Extra care living, still your own home with care on tap. If residential provision is the only option then support should be available to ensure individual don't lose the right to their own lives.

At all stages the person needing care should be in control, and if they choose should be supported to continue with their normal life. If none of the stock option suit them then a bespoke solution should be found, PAs supporting people in residential settings, 24 hour care at home, bight centres, like day centres, but where someone can sleep if they need support should be set up, the possibilities are endless. Instead of fitting people to provision, make the services that suit each person.

Being old or disabled should not mean the end of life as it was, but the same life made better because support is available in the way chosen by the individual.  Needing care doesn't mean people that stop being people, and it is never appropriate to treat them as less than the individual they are.

Nobody cares if it costs too much

A pensioner is distressed because his care costs too much. His daughter claims he is being asked to pay £30 towards carers that he can't afford. He is so upset he plans to refuse in the hope he goes to prison so will be properly looked after.

Most people receiving social care are expected to pay towards it, but the charge must take into account income and outgoings and the income left  after certain expenditure must not be below a certain level.  Not having capital or money for a funeral is not usually a consideration. Each local authority sets their own rules within a national framework. If this is as stated and he can't afford to live, he should get advice and challenge it.

The mark of a civilised society is how they treat their weakest members, this  makes me ashamed of our country. The Conservatives have done nothing to support those in need instead they attack those who should be protected.

Robin gets 4 A*s and is a carer

A welsh teen has got 4 top A level grades whilst  being a full time carer to his mum. Thats great but it doesn't change the fact that people who care for family members need more support, better access to respite and higher financial support. Carer's Allowance where carers qualify for it is around £62 per week. Thats for a minimum 35 hour week.

The right to care and support

Luke Davey has cerebral palsy and is registered blind, as a result he needs help with all aspects of daily living. He used to get that help through the Independant Living Fund which topped up his social services care package. ILF has now closed and the money passed to local authorities, but not ring fenced for those who previously had ILF. As a result Mr Davey's care package has been reduced from almost £1,700 per week to just £950 per week. He says this is both unreasonable and unlawful.

In a landmark case Mr Davey is taking Oxfordshire County Council to the Appeal Court, it will be the first time the 2014 Care Act has been used to challenge the actions of a local authority in this way. Thats the Act that was supposedly  meant to give those using care services more choice, control and rights. Mr Davey previously had this package for 23 years, and had a team of personal assistants supporting him. His needs have not decreased funding cuts have reduced his package. Cuts mean severely disabled people like Mr Davey will struggle to manage, if they do at all, and will be reduced to existing rather than living a life they choose.

In a twist disabled people were reportedly excluded from the court hearing, when staff allegedly  claimed there weren't enough staff to cope and refused to open the acessible entrance. Access was later allowed but judged poor by campaigners, whilst one risked injury.

The Government states that they want disabled people to be full participants in society, but their policies scream otherwise. If someone needs support to live, removing that support, or reducing it,  takes away their ability to choose how they live. Many disabled people have full lives, they are part of their community, taking part in events, aand may be contributing through volunteering, work.or study. They can only do this with support, support the law gives them a right to. The same support government cuts take away.

This case could have a fundamental effect on the lives and rights of disabled people. If successful it could force massive changes in practice and attitudes within support provision. It is right that disabled people would want to attend the case. To try to prevent this could be discrimination under the Equality Act 2010. That an organisation charged with upholding the law could even possibly breach it in this way is shameful. The right to defend rights through including access to justice is the most basic right  of all.

Story Source U R The Voice and Vox Political online