Caring for our future: Consultation on what and how people pay for their care and support
Inclusion London’s response
October 2013
1. Introduction
Inclusion London welcomes the opportunity to respond to the ‘Caring for our future: Consultation on what and how people pay for their care and support. The consultation documents are available at:
Inclusion London
Inclusion London is a London-wide organisation which promotes equality for London’s Deaf and disabled people and provides capacity-building support for Deaf and disabled people’s organisations in London
Disabled people
There are:
- 11.5 million people in the UK who are covered by the disability provisions set out in the Equality Act. This is 19% of the population[1].
- Approximately 1.4 million disabled people are living in London[2]
- Just under 1.3 million disabled people aged 16 to 64 years resident in the London[3].
Numbers receiving care and support
According to the figures given in the consultation document there are:
Home/domiciliary care
532,000 Local Authority supported older people receiving domiciliary (home) care and support
350,000Local Authority supported younger adults receiving domiciliary care and support
325,000 self-funders receiving domiciliary care and support.
Residential care
170,000 Local Authority supported older people receiving residential care and support
54,000 LA supported younger adults receiving residential care and support
125, 000 self-funders receiving residential care and support
2. Inclusion London’s response to the consultation
Inclusion London response contains:
- An overview to the consultation as whole
- Answers key consultations questions that are particularly relevant to disabled people, so not all questions are answered.
2a. Overview
Inclusion London believes that disabled people have the right to Independent Living in its widest sense as defined under the UN Convention[4]on theRights of Personswith Disabilities. At a minimum disabled people have a right to support and assistance which enablesindependent living and inclusion in the community,so isolation and segregation from the community is prevented[5]. This right is being jeopardised by the current minimal provision of care and support.
The future funding of care and support in the UK is one of the biggest issues of our time. Currently there is a crisis in the provision of care and support, because the care system has been chronically under-funded for years; Age UK’s Care in Crisis 2013 report[6] showed that £7.8 billion needed to be spent in 2012 to maintain the same levels of service as in 2010.
This underfunding takes away disabled people’s independent living and ability to participate in the community. Research by the London School of Economics for the charity Scope published in January 2013 revealed how disabled people are being failed by the care system:
- Almost 40% of disabled people are unable to eat, wash, dress or get out of the house due to underfunded services in their area[7].
- nearly half (47%) disabled people say they are withdrawing from society because the services they receive do not enable them to take part in community life[8].
- over one third (34%) being unable to work or take part in volunteering or training activities after losing support services[9].
- over half (53%) saying they felt anxious, isolated, or experienced declining mental health because they had lost care and support services[10]
- up to 105,000 disabled people are at risk of not receiving any basic support for their day-to-day lives as a direct result of the Government's proposals for social care reform[11].
The system for funding care and support has to be fundamentally changed so the system it is fair and sustainable for all people.
Narrowing of eligibility
Councils are narrowing the eligibility criteria for care and support, so disabled people that previously obtained support arenolonger eligible, for instance, some councils that used to provide support to those with moderate needs now only support those with ‘substantial’ or ‘critical’ needs. The number of councils in England that are only providing support to those assessed as having ‘substantial’ or ‘critical’ needs is rising:
- 70% of English councils in 2008/09, while 83% do so in 2012/13[12]
- 2% of councils only fund those with critical needs[13].
- As a result over 100,000 disabled working age adults are set to miss out on essential care[14].
National eligibility criteria
The government has now set the national eligibility criteria at substantial[15] so the situation is unlikely to improve
Government’s response to crisis
The government’s response to the crisis in care has to been to announce the funding reforms and the £3.8 billion of ‘pooled’ funding for health and social care for the spending round in 2015/16. But while welcome,the £3.8 billion is just a stop-gap of funding for one year, it does not address the need for the whole system of funding care support to be fundamentally reformed.
Also, the £3.8 billion is not ‘new’ funding, it has been taken from the NHS. The Royal College of General Practitioners (RCGP) has warned that the ‘crisis’ in general practice will intensify due to money being diverted away from GP services[16].
Also the positive impact of the £3.8 billion will be counter-acted by:
- a further cut of 10% on local authority budgets[17]
- £795m savings adult social care budgets planned for 2013/14 on top of the £1.89 billion made in the last 2 years[18]
- a further cut of £4billion in addition to the £11bn of welfare cuts - to be made by 2014/5[19].
Funding reforms complex
The funding reforms are far from simple; many pages in the consultation document are devoted to the details. The number of question asked in the consultation indicates the complexity:
- There are 11 ‘Consultation Questions’
- 40 ‘Call to evidence’ questions
- 5 ‘Implementation’ questions
A full list of all these questions is given at the end of this document.
Funding reforms too narrow
Many people who receive care do not have substantial savings or a house, so these reforms will have absolutely no impact on them.
Using the figures given in the consultation document we see that there are one and half million (1,500,000) people receiving care and support, while only 100,000 people will benefit from the government’sfunding reforms. Yet, government’s plans andthis consultation focuses on these reforms that only benefit a minority with substantial financial assets.
An improvement in the care and support for the remaining 1,400,000 people is a more pressing issue, the majority of which (1,195,000) receivecare and support in their own homes. Inclusion London believes that the focus of funding reforms should be on improving the care for this majority of people.
Scope of the consultation
The scope of the consultation is very narrow; the majority of questions are concerned with the funding reforms mentioned in brief above, which only benefit a small percentage of people.
What is a fair and sustainable system?
Inclusion London believes the public should have been given the opportunity to voice an opinion, via this consultation, on what they considerisafair and sustainable system of funding of care and support for the future. We believe that this narrow consultation is inadequate, as it does not address the need for a fundamental change in the funding of care and support that is needed to meet future demand.
Fair and sustainable funding
The consultation document says that 40% of people are ‘un-aware they might have to pay for their care and support’. This indicates that many people expect care and support to be free at the point of delivery, similar to the NHS. The NHS is very popular andthe system of funding the services is seen as fair because most benefit from the system at some point.
Inclusion London believes a similar system for care and support should be created, whereby care and support is paid for by national insurance contributions / taxation and is free for all at the point of delivery. Australia is currently rolling out their DisabilityCare service[20]; we recommend that the UK looks at adopting a similar scheme.
2b. Inclusion London’s response to key consultation questions
Below is Inclusion London’s draft response to the key consultation questions only. The full list of questions is given at the end of this document.
Paying for Care
Fairer and more consistent charging – the charging framework
Consultation Question 01
Do you agree that the future charging framework should be based on the following principles? The principles are to be:
• Comprehensive
• To reduce variation in the way people are financially assessed; be transparent, so people know what they will be charged
• Promote wellbeing and support the vision of personalisation, independence, choice and control and enables delivery of funding reform
• Be user-focused reflecting the variety of care journeys and the richness of options available to meet their needs
• Encourage and enable those who wish to take up employment, or plan for the future costs of meeting their needs to do so; support carers and not place additional burdens on them, in recognition of the invaluable contribution they make to society
• Minimise anomalies and perverse incentives in choices between care settings
• And be sustainable in the long term.
Inclusion London’s response
Principles
While Inclusion London agrees with many of the principles mentioned above, we do not agree with the presumption of ‘Paying for Care’ or ‘charging’ or the ‘charging framework’. Nor do we believe that the coalition government’s funding reforms are fair, because only the minority of people receiving care will benefit from them.
Disabled people must be provided with the support, assistance and equipment that will enable them to participate with other citizens (both disabled and non-disabled) on equal terms, and with equal opportunities, across all areas of life.
There must be extensive and sustainable funding for genuine independent living and user, self-directed support that is free at the point of need, paid from general taxation/National Insurance contributions. This is the most fair and sustainable system.
Funding must be at levels that enable disabled people to achieve self-determined independent living, in its widest sense as defined under the UNConvention on theRights of Personswith Disabilities[21], with the realistic option to employ personal assistants, at an adequate wage, through the provision of Direct Payments.
The level of support should be one that enables disabled and non-disabled people to enjoy the same degree of control over their lives that does not involve being forced into residential, group or nursing home provision.
Fairer cap for working age adults – varying the levels of cap
Consultation Question 02
Do you agree that the decision on the level of the cap on care costs set for working age adults between the ages of 18 and state pension age should be based on the following principles? The principles are:
• People in similar circumstances should make a similar contribution
• Reflect people’s ability to plan, prepare and build up savings
• Be simple for people to understand and feasible to implement
• Support integrated care and effective transition between services
• Help people to live independent lives.
Inclusion London’s response
The cap on funding at £72,000 is complicated, for instance, a division is made between care costs and living costs (bed and board) and living costs are not included in the cap in care costs. It is difficult to work out whether you will need to pay for your care for 5, 10, 15 or 50 years before the cap will come into force.
However, the more important issue is that many people receiving care do not have substantial savings, so neither the cap in care costs nor the increased thresholds will improve their financial situation or improve the level of their care: There are one and half million(1,500,000) people receiving care and support, whileonly100,000 people will benefit from the government’s funding reforms of a new cap and new thresholds. The remaining 1,400,000 are untouched by the funding reforms.
Currently care in many areas is at a minimum, basic level that jeopardises independent living in its widest sense as research by London School of Economics for Scope indicates:
- Almost 40% of disabled people are unable to eat, wash, dress or get out of the house due to underfunded services in their area[22].
- nearly half (47%) disabled people say they are withdrawing from society because the services they receive do not enable them to take part in community life[23].
- over one third (34%) being unable to work or take part in volunteering or training activities after losing support services[24].
- over half (53%) saying they felt anxious, isolated, or experienced declining mental health because they had lost care and support services[25]
- up to 105,000 disabled people are at risk of not receiving any basic support for their day-to-day lives as a direct result of the Government's proposals for social care reform[26].
Also as a result of the narrowing of the eligibility under the FACS[27] criteria over 100,000 disabled working age adults are set to miss out on essential care[28].
Neither the funding reforms nor the £3.8 billion for the spending round 2015/16 will solve the ongoing crisis in care. The system for funding care and support has to be fundamentally changed, so it is fair and sustainable for all people. Inclusion London recommends that care and support is free at the point of delivery paid by increased National Insurance contributions.
Consultation Question 03
Do you agree in order to support transitions from children to adult care and support we should extend free care for eligible needs to young people up to age 25?
Or are their alternatives we should consider such as through integration between child and adult care and support and the guidance provided on how to set the level of the cap?
Inclusion London’s response
Inclusion London agrees with the extension of free care to young people up to the age 25, but as mentioned above, we believe that care should be free at the point of delivery for all, paid from National Insurance contributions.
Who will qualify for a deferred payment?
Consultation Question 05
Do you agree our criteria for determining who qualifies for a deferred payment should be? The criteria include people who would benefit from residential care and people with less than £23,250 in assets excluding their home.
Are there any examples of where greater flexibility might be necessary to ensure people do not have to sell their homes in their lifetime to pay for care?
Inclusion London’s response
Initially the deferred payment scheme seemed relatively straight forward i.e. it would mean ‘that people do not have to sell their homes in their lifetime to pay for residential.[29] But this question mentions ‘people with less than £23,250 in assets excluding their home’ which appears to make a simple system complex, so it will be difficult to understand whether you will be entitled to a deferred payment or not. Also ultimately more will have to be paid as Local Authorities have the right to charge interest on the loan.
However, the more important issue is that many peoplereceiving care and support do not own their home. Inclusion London is concerned that the level of care for non-home owners is not being improved. As mentioned above we believe that this can be provided through by fair and sustainable funding systems i.e. that care and support is free at the point of delivery paid for by National Insurance contributions.
How long can the deferred payment last?
Consultation Question 07
Do you agree local authorities should normally wait at least 3 months after someone has died before actively seeking repayment? Are there circumstances in which the Local Authority should wait longer?
Inclusion London’s response
If this system of deferred payments goes ahead rather than the system we have recommended above, Inclusion London suggests a minimum of year is given, as many families will need to sell the house to pay for the deferred payment. If the house is not sold after it has been on the market for a year the timescale should be reviewed.
Call for Evidence
Evidence Question 1, 2 and 3(only key sections of the questions are given below, see list at the end of the document for the full questions)
Evidence Question 1
Howcanweraiseawarenessofhowcareandsupportworkstohelppeoplefinanciallyplanfor theircareneeds?
Evidence Question 2
Inwhatcircumstancesissupportrequiredtohelppeoplewiththeirfinancialdecisionsonhowto payforcare?
Evidence Question 3
Wewelcomeviewsonhow, throughimplementationoffundingreform,wecanencourage peopletotakeresponsibilityforplanningandpreparingforfuturecareandsupport.
Whatcould preventpeoplefromtakingresponsibilityforpayingtheircontributiontowardscarecosts?
Inclusion London’s response
The framing of these questions and the whole consultation is too narrow, as there is a presumption that the general public should pay directly for their care and support.
Inclusion London believes that this consultation should have given the public an opportunity to voice an opinion on the funding system for care and support as a whole, before a presumption was made that the general public should pay directly for theircare and support.
Inclusion London does not believe that people need to be ‘encouraged to take responsibility’, if a fair and sustainable system to pay for care and support was in place we believe people would be willing to pay. At the moment such a system is not available.
According to the consultation document only 40% of people are unaware that they might have to contribute towards the funding of their care and support until they are at a point of crisis, probably because they believe that care and support is free at the point of delivery similar to the NHS.
The NHS is popular and the system of paying for the service through National Insurance contributions is seen as fair. Inclusion London believes that the general public would be willing to pay for their care and support through increased National Insurance contributions. We believe this is a fair and sustainable system; while the current funding reforms involving a cap of costs, increased thresholds and deferred payments are not fair as it only assists the minority, see details under Question 5. Australia is currently rolling out their DisabilityCare service[30], we recommend that the UK looks at adopting a similar scheme.