Written evidence submitted by Inclusion London [ASC 006]

Inclusion London is a London-wide user-led organisation which promotes equality for London’s Deaf and Disabled people and provides capacity-building support for over 70 Deaf and Disabled People’s Organisations (DDPOs) in London and through these organisations our reach extends to over 70,000 Disabled Londoners.  

2. Executive Summary

Key points

• A sustainable funding solution for adult social care is urgently needed as the current funding system is failing Disabled people. 
• There has been over £6 billion savings in the social care budget since 2010, as a result many Disabled peoples’ social care packages have been reduced to a basic clean and feed model of care, which isolates Disabled people in their own homes so contact or participation in the community is not possible.
• Disabled people call for a social care and support system which is adequately funded in sustainable way so our rights under Article 19 – Living independently and being included in the community under the UN Convention of Rights of Persons with Disabilities (UNCRPD)[1] are fully implemented.

2.1) Summary of key recommendations:

      That social care and support, free at the point of delivery is funded through general taxation.   

      That the following underlying principles under pin the sustainable funding model of social care in the future:

• The rights contained in Article 19 of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD)  and the UNCRPD Committee’s General Comments on Article 19.
• The social model of disability.[2]
• The twelve pillars of independent living[3]

      The future funding model supports a National Independent Living Service as described in this document

3. The current failing social care system

A new sustainable funding solution is urgently needed because the current system is failing   Disabled people.  The shocking shortage of funding in social care is well documented[4].  Government measures such as the Social Care Precept, Better Care Fund, Adult Social Care Support Grant, and extra funding for social care have failed to plug the resulting funding gap.[5]  In addition the Social Care Precept ‘exacerbates distributional inequalities.’[6]   In 2018 a report published by the  Housing, Communities and Local Government Committee and the Health and Social Care Committee concluded that : “The combination of rising demand and costs in the face of reductions in funding has placed the social care system under unsustainable strain. In its present state, the system is not fit to respond to current needs, let alone predicted future needs as a result of demographic trends”.[7] 

The Coronavirus emergency has exposed the inadequacy of current system and increased the shortfall[8].

3.1) What is the impact of reduced funding for social care and support? 

In June 2015 the ADASS informed the Commons Select Committee on Health that 400,000 fewer disabled and older people received social care than in 2009–10.  The ADASS survey of councils in 2015–16 found that that £228 million (28%) of reported “efficiencies” were in fact met by reducing volumes of care packages.[9]

We know many Disabled people whose support packages were cut dramatically by at least more than a half, meaning that:

• People are stuck at home often alone, with only very basic personal care needs met.  This limits, and often completely denies opportunities to participate in society, become economically active, build relationships and live a normal life, that many non-disabled people take for granted.
• There is greater dependency and reliance on informal care, which can reduce choices and also has an impact on the carers ability to participate in society.
• To meet the shortfall in funding local authorities changing their social care contributions policies, forcing Disabled people to make larger contributions out of their benefits and pushing them into greater poverty and deprivation.   These policies particularly disadvantage working age Disabled people on higher rates of benefits, who are unable to work. 
• In order to make efficiency savings local authorities imposed bureaucratic barriers, stringent monitoring systems and very strict conditions on those who use Direct Payments and manage their own support, this effectively removes the benefits of having a direct payment and places a lot of additional bureaucratic burden on Disabled people who manage their own support.

3.2) Money wasted on institutionalisation

Disabled people, particularly people of working age, wish to live in their own home in their own community.   Yet Disabled people’s rights to choose where and with whom they live are being ignored as the case of Lakhvinder Kaur, reported by the Disability News Service illustrates:

Lakhvinder  ‘has spinal muscular atrophy, she says she has been “fighting non-stop” for seven years to secure a proper care package that will keep her safe, and allow her to live in her own home, manage her own support, and enjoy the typical social life of a young woman in her 20s. Instead, she has had to move from one inappropriate care home and supported living setting to another since she turned 21.[10]

Instead of investing in community-based services, money is wasted on often expensive residential placements, where people often become institutionalised and subjected to abuse[11].  People with learning difficulties are forced to stay in hospital units or care homes because of a lack of accessible or supported housing and social care and support in the community:[12]

3.3) Conclusion

Because of the huge cuts in the budgets for social care funding, the Care Act 2014 has been unable to ensure Disabled people’s wellbeing has been promoted - Disabled people have no control over their day to day life and support is denied to enable an individual’s ‘contribution to society’.  On the other hand, money is spent on services that do not support choice, control and independent living.  A solution to the funding crisis is urgently needed. 

4. Long term reform of social care that Disabled people want

Although the public debate about social care funding largely is focused on older people, it is worth remembering that half of social care spending is on people of working age.  Moreover, Disabled people often have to pay a contribution to their care out of their benefits.  Any reforms of social care and social care funding should take into account the needs and views of Disabled people of working age.

4.1) Social care support that implements our right to Independent Living

Before deciding on a funding model, it is necessary to consider what should the social care service of the future look like?  Disabled people call for a social care system that implements our rights under the UN Convention on the Rights of Persons with Disabilities,[13] particularly the rights under Article 19 – Living independently and being included in the community.[14]   The UK ratified the Convention in 2009[15] and should be taking practical steps to implement the rights contained in the Convention. 

In practical terms the rights contained in Article 19 enable Disabled people who require social care and support the same level of opportunity[16] and choice as non-disabled people to pursue a career, have an active social life, find a partner and have a family, be involved in cultural activities, politics, sport/physical activities and be active in the community.  Also, to exercise their control over their day-to-day life[17]  such as having control over the time to get up/go to bed, when and what to eat, where to meet friends and family, where to go on a night out etc.   Non-disabled people often do not give a second thought to these decisions or choices. Disabled people believe that they should have the same level of autonomy. 

4.2) National independent living service

Disabled people’s organisations put forward a model of Independent Living support service which would implement article 19 of the UN CRPD[18].  Support for Disabled people will be administered by a new ‘national independent living service’ managed by central government, led by disabled people, but delivered locally. It will be for need, not profit, and will not be means tested. It will be independent of, but sit alongside, the NHS and will be funded from direct taxation. The service should build on the positive lessons learnt from the Independent Living Fund, which was based on personalised support enabling people with high support needs to live in the community.  The experiences of user-led Disabled People’s Organisations (DPOs), which have innovated and developed exciting models of self-organised and self-directed care through personal budgets and peer support, should also inform the new service as well as failures of the local authority care and support system.  The service must focus on local investment which ensures choice of support options.

The national independent living support service must be co-created with Disabled people through an independent living task force led by Disabled people and representatives of adult social care service users.

5. Long term funding for social care

We recommend funding social care and support through general taxation because it would:

• Be a fair system, as those with higher incomes pay more.
• Allow greater flexibility to respond to changing levels of need and avoid stigmatisation of the recipients.
• Provide support to people at an early stage in their own home so the cost to NHS Hospital services will be reduced.
• Be an uncomplicated system, which can be easily understood by the general public.
• Be a transparent system, because there are no hidden costs such as the so called ‘hotel costs’ for those in residential care as under Dilnot’s recommendations.[19]

5.1) Learning from Scotland’s free personal care system

Scotland has had free personal care since 2002.[20]  It is proof that a system delivering care which is free at the point of delivery is possible.  So, there are positives aspects of the Scottish system to drawn on, but there are also draw backs, we give examples of both below: 

• According to the Kings Fund the Scottish system has seen a welcome ‘shift in the balance from hospital and care homes to community care by supporting people to remain in their homes’,[21] which would take the strain of NHS hospital services as requested by the Select Committee on Health.[22]  
• The definition of personal care in Scotland is too narrow; support to participate in the community is not included and even support for tasks such as housework, laundry and shopping are not covered.[23] 

So, while we can learn from the success of Scottish system their model of personal care would not provide Disabled people with support needed to enable independent living as stated in the UNCRPD Committee’s comments on Article 19, so a huge opportunity would be lost if this model is followed in all aspects. 

6. Other funding models

6.1) Hypothecated tax

We recommend that social care is not be funded through hypothecated tax with set precepts or levies, as they have caused difficulties as evidenced by those encountered in Australia with their National Disability Insurance Scheme (NDIS).[24] The NDIS was financed by an increase in the Medicare levy in June 2014 from 1.5 per cent to 2.0 per cent of taxable income. This has proved to provide insufficient funding[25] and there is a lack of cross party support for a further increase on taxes to fund disability support.[26] Also according to the Kings fund hypothecated tax ‘could exacerbate the lack of alignment between the health and social care.[27] Funding through general taxation allows the flexibility needed to respond to changing levels of need. 

6.2) Private insurance schemes

Private insurance scheme would disadvantage working age Disabled people who are likely to be charged higher premiums.

6.3) Cap on care costs

Cap on care costs would not resolve fundamental problem for many Disabled people who are unable to work and have to contribute to their social care support from their benefits.  Under existing legal framework some social care users could be left with less than £100 per week to live on.[28]  It is great injustice that Disabled people should be pushed into greater poverty just because they need social care support to do basic things in life.

6.4) Conclusion

A sustainable funding model that provides social care and support for independent living, which is free at the point of delivery is urgently needed.  We believe the solution is funding through general taxation.

March 2021

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