One Voice - for disabled people
Topic 1 – the Government’s vision for the future
Is there anything missing from this approach?
User groups should be part of decisions about the developing of services to give more choice – where do independent living centres come in this plan?
How should it work
Response:
Prevention services:
It was agreed across our groups that more money should be spent on prevention services. What our participants meant by this was information and help on diet, exercises that were impairment specific and run for disabled people at leisure or daycentres, more opportunities for disabled people to attend event and services outside their home to reduce isolation and a worsening condition, more money spent out of the NHS budget on aids and adaptations to help people to stay in their homes, and more access to funding for adaptations (through the disabled facilities grant) for disabled people who are not council tenants.
One of the Groups pointed out that Disability office report says aids and adaptations are cheaper than increased care costs, but take too long to be done, increasing cost. In each of the groups people talked about examples of having to wait 1-2 years to have an adaptation done in Wolverhampton, that in the mean time people have more accidents which means they use up more NHS hospital resources, that Council assessors often only allow for the minimal adaptation out of the budget, and sometimes by the time it is built it is no longer accessible (especially for children) or adequate, so money has been wasted.
It was generally agreed that more money spent on more appropriate and better targeted aids and adaptations would save money in the long run by keeping people from needing more care services.
Many people said that they didn’t know how to eat healthy or exercise safely as disabled people, and there was no information or help with this.
Connected to joined up working, about 50% of participants noted that the local council had abolished the (very low priced) leisure card for disabled people, so now they couldn’t swim (most people) or exercise at the Council facilities because it cost too much. The point was made repeatedly that this lack of access to swimming and other exercise led to increase ill health or weight, and cost more in terms of demand on NHS services as a result.
It was agreed that this should be a pot of money coming from the health service and this money should be ring fenced. One group pointed out that the NHS had kept money meant for carer holidays, so it was important that they were made to spend it on these particular needs.
It was also pointed out that criteria need to be revised so that the need for earlier (and cheaper) prevention is recognised.
National Assessment
It was generally agreed that this would be a good thing if it worked properly, but there were barriers to this.
People felt that a National Assessment was useless if local authorities were able to set their own budgets on care, and to decided what they were and weren’t going to fund, as this would not address the postcard lottery problem: if a person is assessed as needing help with laundry in Devon, but when they move to Nottingham the Nottingham council don’t fund this kind of help, then regional differences have not been addressed.
Also if people are assessed in their own home as needing a certain level of care, that may be based on the aids and adaptations they already have in their home. If they move elsewhere without those adaptations, then the national assessment is meaningless, because they will be more disabled by their new environment then they were by the one they were assessed at.
A joined-up service:
Everyone who came to our discussion groups said they thought this was essential and one of the problems with the current system, but they also thought it would be the most difficult to achieve.
In 2 of the groups people gave personal examples of being pushed between adult services and the NHS continuing care – adult services saying they couldn’t fund the extra care needs and that they should be funded by continuing care, and the NHS claiming a person didn’t meet the criteria. Joined up working has to be more user centred, and not about NHS and adult services protecting their pots of money.
Information and Advice:
Everyone thought this was really important, and one of the flaws of the current system was agreed to be that disabled people and their families don’t know what help is available, where you go to get it, or what the local council’s priorities mean.
It was agreed that information should be in a variety of appropriate formats (audio, plain English, Braille, signed etc), easy to find or get hold of, and easy to understand; and that there should be a one stop shop approach, so that people don’t have to go to different places to find out about what is available.
It was also said in each of the groups that Councils and Health authorities should signpost people to third sector organisations who can provide advice on care issues, because while there was some information available, there was little or no advice forthcoming from councils, social workers, health professionals etc.
Personalised care and support
Many people said that this only existed on paper. Many people told of their experiences of care being based around the needs of the care agency. There were many examples of people not having any or much choice in when they went to bed or when they were dressed or undressed, or how their laundry was done, one participant gave an example of a friend who had help with bathing because he couldn’t do it himself, but that the carers refused to clean the bath as they were only paid to bathe him, so that over time the bath became more and more unclean. People said that these kind of things need to be addressed via care services having unannounced spot checks and visit to end the poor quality of service.
Fair Funding
Everyone agreed that the care service should be more fairly funded 27/27 people did not agree with the Government decision to exclude a universal tax increment as a means of achieving this.
People said they could not tell whether the Government proposals would make for a fairer or more equitable system, as not enough detail was given. No one could tell who would be the winners and losers, who would get more help with their care needs, who would get less, or how any of this would work.
One of the questions asked in the presentation was should disability benefits be used to pay for the system. 27/27 people did not agree with this. A variety of reasons were given, including that the Government cannot say that it wants people to have more choice and more control over personal budgets when they are intending to take this away by taking benefits like attendance allowance or DLA away from people. Many said that they use their DLA for disability need like aids (visually impaired people), heating, transportation, clothing, special foods etc – all of which were cited as impairment related additional expenses. They said to remove these benefits or to transfer them to adult services would mean less choice and less independence.
In each of the groups people pointed out that the Government does not provide a heating allowance for disabled people, they would need to do this if they took away disability benefits.
Also in 2 of the 3 groups people talked about how there was no information in the government’s documents of where unpaid carers fit into the system, as they are not even mentioned. It was also pointed out that carers’ current contribution saves the state a lot of money, but is not properly valued when they only get £53 per week.
Topic 2: Making the vision a reality – joined up services, a wider range of care and support services, better quality and innovation
People agreed that this approach was correct but would need massive changes to the way agencies and officers work.
Many examples were given (as above) of failures to work in a joined up way that led to greater cost and lesser quality of service for disabled people. The main barriers to making joined up services happen were agreed to be bureaucratic practices, staff not communicating with each other in the same department, Councils and Health Authorities being more interested in protecting their budget than in ensuring the best for the person, cutbacks in one area having an impact on an individual’s quality of service and care.
Topic 3: Funding Options
All of the participants disagreed with the decision not to consider a universal statutory way of raising money to pay for the care system via income tax or national insurance. This was universally agreed as the best and fairest means of paying for care, and the argument that this put an unfair burden on wage earners was refuted, since in the view of our participants it is not an argument given any consideration when paying for education, prisons, trident missiles or other defence spending, or MP expenses.
The insurance scheme was rejected as unfeasible because the premiums would be impossible high or uneconomical given insurers present reluctance to ensure people with pre-existing conditions on any basis unless at an absurdly high premium. Similarly any system that didn’t have an element of compulsion was believed to be unworkable – if an insurance system is optional very few were expected to opt in.
The partnership scheme was rejected on the basis that it seems that it will be much the same as it is now, and the government’s premise for the debate is that change is needed.
Also, no one present at any of our discussion groups believed they would be able to save up £20,000 to pay for their share of the care need in a lifetime. The partnership scheme was also regarded as unfair since only the people with care needs would pay for care – it is a lottery as to whether someone has a care need, it is not a choice, so it is something that society as a whole should fund, not just the individual with care needs.
The Comprehensive scheme was agreed by all our participants as the “least worst” of the 3 choices not rejected by the Government.
There were concerns expressed that the materials stated that many people born with a care need would continue to get this care entirely free – there were questions about how this would be decided, about how this would address the problem of funding, and that if it did not, whether the system would be any different – in other words would local councils continue to have a large say on whether they were willing to fund certain care needs, based on their own local budget setting?
The Comprehensive scheme was considered by all our participants as the “least worst” given the Government’s rejection of a tax funded scheme. But people at our discussion groups repeatedly reiterated that only demanding that people over state retirement age paid into the scheme made it onerous upon the retired, and reduced the potential money raised, compared to having everyone who could afford it paying into the scheme from adulthood onwards.
The majority opinion was that not enough information on this option was given to make an informed decision, and the following questions were raised repeatedly:
Who wins and loses under this system, and are the winners and losers different from the current flawed system?
What is the threshold for having to pay into this system?
How is that assessed – a crude income/need analysis is not a good tool when it doesn’t take into account the greater costs associated with being a functioning human being for many disabled people.
How much money is it calculated to raise, compared to, for example, a 2% NI increase?
How practical is it to expect that people can choose to defer their state pension to help pay for this – what analysis has been done of unemployment rates and earning rates of those that are 60+?
What data do you have on the number of people who have a lump sum available to them upon retirement?
In the presentation slides there was a question about whether the system should be nationally or locally determined funding system, this is the response:
Participants stated that Councils do not look at what people need, they look at what is the minimum they can fund or afford, in the context of their budget after they have made a decision on what they want the Council tax to be.
Several participants pointed out that there have been care service closures across the sector, with no analysis of their impact, as well as proposals to implement new charges for services that were previously free.
Participants believed that locally determined funding would not address care needs, it would only address budget constraints. In 2 groups people made the point that if local councils have to think about their budgets and council tax, they can’t think of the bigger picture, and are less likely to work in a joined up and innovative way. One of the points made in the first group was universally agreed in subsequent groups – it may save a lot of money in hip replacements to spend a lot more on adaptations in a home, but adaptations come out of council budgets and hip replacements do not, so if a council is thinking about how much it want to spend on care, it is not required to think about how spending money now will save NHS resources later.
Participants believed that a fully national system would ensure this didn’t happen. It would also make sure that areas with a higher number of people in need of care services – like Wolverhampton, which has a higher than average percentage of disabled people – didn’t lose out because of difficult local council budget decisions.
End Note
All of our participants were asked to write down on cards or dictate the things that were of most concern to them, their main views and priorities in each consultation area.
They are attached as an appendix to this submission so that you can see what disabled people said in their own words.
This is the submission from One Voice, the Wolverhampton disabled people’s organisation.
APPENDIX
Care Meeting 1 – 21st October
If care homes are for care why do they smell off pee ?
services need to be monitored better and have unannounced spot checks – residential homes and care agencies, because the quality and standard is poor.
Data protection privacy issue about sharing information for a joined up service – making sure the right information is shared
How can there be joined up working if nhs and adult services are protecting their own pots of money.
Service users need to have a say in developing or improving service – in innovation
Staff training – not enough time for training of agency carers
Insufficiently staffed services
Regular health checks for disabled people would help to prevent further illness or deterioration
Dietary checking – diabetes is a huge concern, but there is little prevention
Disabled people often eat cheaper foods that may not be good for their conditions because they are ready made, and don’t require a lot of preparation or cooking which is difficult
Training care home staff in diet and exercise and care services – role for community organisations here.
Directing NHS cash to community work on diet and exercise – at day centres, community centres – outreach.
Information - deaf don’t have access to the info they need
Accessible format of information needed
Information difficult to find or understand, advice non-existent
Going out to community – more social opportunities for disabled to keep us involved
Adaptations – take too long, and too difficult
Recycling aids and adaptations – there is a lot of waste here
Lots of waste – many stories about aids not being collected/taken back by NHS
Staffing – only 12 chiropodists in Wolverhampton
Care workers are underpaid and undertrained.
Services should work together in the interests of users
Social workers don’t know what is available and don’t want to help
Dignity and respect often missing in the way disabled people are treated
There needs to be help for disabled people to deal with their carers or agencies – direct payments is about money what about quality and authority?
Council daycare costs a lot – more use of community services.
More choice needed – there is very little choice.
Care agencies are there to make money, they put you to bed early because it suits them – not when it suits you.
I can’t get to anywhere before 11.00 because the carers wont come and dress me before that.
The carers would not clean the bath of the old man next door, because they said they were just there to wash him, so the bath is really filthy.
If the council is in charge of the system, a national assessment is pointless – they just want to cut the council tax, they don’t care about care needs.
Councils decide now and the disability office says that not enough is put to prevention, so that it is much more expensive later for falls and broken hips
Any care money managed by the council should be kept separate, so they cant spend it on anything else.
The Council is very expensive – overheads – less money for care.
Insurance no good without element of compulsion
Everyone should have to pay into a government insurance scheme, the money should be protected (not like NI paying for people who are retired now)
Insurance no good – hard for disabled to get insurance – pre-existing condition.
Tax is only fair way to pay for care – we all pay for schools and child benefit even if we don’t have children.
Government pay £42,000 a year of our money for a prisoner, so it should pay £5,000 a year of our money for someone’s care.
MPs are allowed £1,000 for gardening, but I’m not allowed £1,000 for help doing my shopping which I cannot see to do
Comprehensive system wont address the shortfall if only people over retirement age are paying – most of us don’t have thousands in savings when we reach retirement.
Care Debate – Group 2 Friday 23rd October
Is the system fair, quality and affordable
Don’t know because of lack of information
Cant tell who the winners and losers are
Don’t agree with the choices – tax or national insurance increase is the fairest way because no one knows whether they are going to have a disability or care needs – we don’t choose it
Can’t tell from the government information what level of care i can expect, and whether i can have any quality of life if i am not well off enough to top up the basics.
Plan fails to take account of the extra costs of people losing jobs in the current climate and how that will increase care needs and lower the council tax base.
Who audits quality of service?
Cares quality very poor now – they try to control you and boss you around.
Carers have poor training and poor understanding of their role.
What is the threshold for contributions – how can we decide if the systems are fairer without knowing that.
Day care services set up around the needs of the service providers – how will you make this see change?
Should we use disability benefits to pay for the system
Taking away people’s control of their DLA means less choice and less independence over when we do things.
Disabled people’s diets more expensive – i use my DLA for this and heating – who would pay for this if you took my DLA away.
More use of community groups or voluntary sector to provide services, because they tailor around the individual better.
How much will it cost to get services to work together? This cost should not be diverted away from paying for people’s actual care.
We pay some towards our service now, but have very little choice about how it works, when someone does our laundry or cleaning or when we are washed and dressed – we pay but the care agency dictates times. There is nothing in your plans to address this.
Problem with insurance is insurers
User groups should be part of decisions about the developing of services to give more choice.
Where do independent living centres come in this plan – the plan is not very joined up thinking.
Insurers wont insure/pay out for a pre-existing condition
The costs would make insurance prohibitive.
What happens if the insurance scheme falls apart – like the private pension schemes, and the banks?
Who holds the budget
Who decides what we can get via aids and adaptations.
Disability office report says aids and adaptations are cheaper than increased care costs, but take too long to be done, increasing cost
Local/National
If assessment is national then standard amount of care should be national, and the local authority should be given this money ring fenced.
If councils set budget, they will be able to cut care services to reduce the council tax – that isn’t a fair system.
More choice = more cost – cost of changing from current system to services that actually offer choice represents huge training, restructure, and other costs
Money needs to be protected so NHS and council don’t spend it on other things
Who decides what is in assessment?
Disabled people know what they need in order to have some quality of life, but the councils refuse to give care support on this.
Blind people need help with shopping, but we cannot get help for this as it is not part of the assessment.
We need help with laundry and shopping but we cant get this.
It isn’t fair to ask the people who need care to fund it – its the societys job through taxes.
Other services provided by the state aren’t used by everyone – like schools and subsidised university fees, and child tax credits – everyone pays for it, but not everyone uses it – why should care be different.
We know 1 family with 3 different social workers for 3 different members, and they don’t talk to eachother or work together in the same department, so how can we make sure all the different service providers will work together for the benefit if the care user.
We are talking about the same money per person per identified need, because some areas – like Wolverhampton – have more disabled people than the National average.
Increase in national Insurance so that people have paid in an amount towards their care, but to be safeguarded for each generation, not using money paid in now, for people who are over 65 needing care now.
Why do only people with care needs pay for care? Everyone should pay like the NHS, prisons etc.
Disabled people – their care needs just happen to them – why should they be the only ones who pay for it – we all pay for education
The longer people wait for prevention help, the worse their quality of life becomes, and the more great the cost will be.
There is not enough joined up thinking or services here – at the moment, disabled people are getting little or no dietary advice, no impairment specific exercise help, and have had their free leisure cards taken away, so that use of swimming pool and other sports facilities, plus travel and other costs is too expensive to use
lack of good diet and exercise makes people fatter and sicker and costs more for the NHS.
People wait too long for prevention support so it ends up costing more.
If Social Services gets the disability benefits are they going to assess us for needing things we currently use it for in daily life, like heating, laundry and clothing costs, and food and shopping. Are they going to pay for someone to come on holiday with us to help with care needs.
More flexibility is needed in the benefits-work system, so disabled people could contribute more without being penalised when they can’t
Choice – will you get choice if you decide not to access the service?
DLA funds equipment for blind people for everyday life, like talking watches. We need to be able to make these choices – giving the benefit to SS to decide what we spend it on wont do this.
How expensive is it to give SS our DLA so they can give it back to us again? How does this save money?
Will it mean that some of it is spent on administrative costs, and some of it is lost to us altogether because adult services think they now best.
Councils and Government keep moving the goalposts – if you take the benefit, what happens when a different govt or different minister takes over and changes a thing again – like with education
Joined up health authority and local authority don’t communicate and don’t act on info – how are you going to make that happen, and at what cost.
Getting organisations to work together is difficult as they are jealous, and gaud their work areas, and their budgets
National assessment only useful if you have the rights to care you are assessed for – wherever you live.
Are assessments going to be fair or are they going to be based on what available locally and whats available in the local budget.
Prevention: Aids and adaptations takes too long and is cheaper than being in hospital and care home.
Money from NHS to properly finance prevention including exercise, diet, aids, and adaptations.
In Wolverhampton services being closed – less choice, not more.
GPs and doctors don’t have enough or give enough information about services, help and advice.
Aids and adaptations take too long to be assessed and to be done. Aids not always done with long term needs in mind which makes bad value for money
Aids and adaptations prohibitive for people who own a mortgauge, so they cant pay, don’t have it done, get sicker or more disabled and end up costing much more to health and care services.
More flexibility if condition is variable – you cannot get support when you need it, and then none when you don’t – its an all or nothing approach.
Information and advice – there is very little – especially for the newly disabled.
Information is not available in the right formats, and not well enough targeted.
Not enough advice available – people aren’t directed to the voluntary organisations that can help them.
Prevention services are patchy and poorly directed.
Joined up – services guard their own pots of money – many disabled people experience being bounced between adult services and NHS continuing care budget.
Need more advocacy services
Too long delay before people come to advice and help you.
No targeted information
Not enough info on how funding is going to work to make a decision for this consult. We can’t even tell which option is fairer.
Insurance – what about mental health conditions – how can you get insurance for this.
DLA used for heating, diet and extra costs we would not be able to afford this if DLA was given to adult services.
Care Debate Group 3 – 27th October
Value carers realistically – not £53 a week
What role do unpaid carers play in this care reform. They are not even mentioned, so are we going to be redundant from care?
Carers must receive a fair benefit for the work they do, not the pittance they are currently given.
A joined up service and better partnership working needed – no one speaks to eachother.
A more flexible service based on the disabled persons need
Revised criteria that recognised the need for earlier prevention
Money to be there and not taken away in a year or two.
A system needs to have all party support so that it doesn’t change every time there is a political change – guaranteed like the NHS.
Education from an early age for patient and for govt and carer
Professional working together - and to be checked that this has been carried through by a correct body.
To carry out true word of caring.
Where’s the finance coming from?
Who will oversee the service they hope to provide, and whoever sees the service must be locally and easily available
Longer the assessment takes the more that carers can also be injured as a result
Education from childhood for healthy and fitness
Or individual education for disabled so it can be personalised based on impairment
Spot checks should be done in homes, care institutes so that they can see what’s really going on.
Quick/ timely assessments
Where is the joined up thinking – your own budget, but then taking away DLA or AA.
To enable disabled people to have free swimming – this form of exercise helps enormously
Correct attitude from social services and others - respect.
Stop cutting back on healthcare services eg physio which is necessary to maintain existing health
Doing the right thing in the right way by the right person
Accurate info same info from everyone not conflicting
Advice should be easy to understand but not talk done to people.
Locally accessible accurate information by properly trained staff
Improve standard of advice given by professionals
A flexible service
Listen and act on needs of the service user
Advice should not be patchy or depend on the officer you see
Prevention services patchy and poorly directed
Quality of advice
Disabled/older person can usually know their limitations and know whats best.
Bring in the right people to do the job – local people instead of private contractors
The right advice if they haven’t got it get it.
Assessment by whom and will it be able to be challenged by disabled individual
Personal budgets and care plan will not allow all people to move home unless adaptations can be made – assessment is not portable if it is dependent on the accessible or adapted house you live in now.
How will it be interpreted – will it really work
More flexibility in benefits work system
Choice
DLA funds equipment for blind, help for holidays, we need to be able to make these choices.
Decent assessment that includes the things that mean a good quality of life.
Communication between all council units in assessment which should be able to be challenged by the assessee or carer.
If run by local authorities if one area cuts back on care, a national assessment is meaningless
If local authority controlled how do you know you get the same level of care.
Services don’t work together now they all have their own criteria and separate funding – how could it be made to work.
Attitudes of different bodies working together
Checked out to see if it is carried through. If not, checked out to see why, then make sure it is changed out with a time limit on it.
Joined up services is sounding good but in practice will need finance in full and need to communicate fully for it to work.
Services should be working together – agreed but they need to change attitudes to think about the individual as an individual
Good idea but how will it work?
Where is funding coming from (leave my DLA alone – i use it correct, i don’t want it taken away, i like my carer thank you
Nationally care service must be a single entity.
PCT and SS and ILF all work differently i don’t see them changing.
Accessible quality information from one source about care and equipment needs
How are people who cant work going to pay for insurance. I have been turned down for insurance
What choice? Re financing possibilities – these are poor choices – it should be paid by NI
Partnership is least bad but a tax funded option is the only fair one
Insurance should be compulsory for everyone
A tax based system should be included as it is the most fair way to fund the costs and why it should be excluded is crazy.
Social care funding must be an extension of how NHS care works.
Why not tax funded? – it would be a fairer system
Do not agree to means test value of house
Tax funded added to existing NHS system should be used and the system already exists so it is cheaper to set up
Impact of different legislation means people may get different level care. i.e. mental health act
The alternatives is not fair to one group or another and as they say want to be fair to all the tax based system is fairest to all.
Partnership cost should not include house as asset.