Written evidence from Scope

About Scope

Scope is a charity that exists to make this country a place where disabled people have the same opportunities as everyone else. Until then, we’ll be here.

Key messages

●       Disabled people aged 18 – 65 represent a third of social care users and just under half of all expenditure on social care[1].

●       It is important to meet the health and care needs of over 65s, but it is also critical to give working age disabled people the care and support they need under integration.

●       Integration is a necessary step to improving care and support for working age disabled people, but it must be done in tandem with urgent funding to social care.

●       55 per cent of working age disabled people don’t think social care supports their independence, and only 18 per cent say it supports their independence consistently[2].

Recommendations

1.    In the short term, the Better Care Fund should implement metrics to measure the care and support outcomes of working age disabled people:

●       Widen the supporting national metric on permanent residential care and nursing home admissions in the Better Care Fund to people aged 18-65

●       Add existing metrics from the Adult Social Care Outcomes Framework adult social care, on employment, accommodation setting and social contact.

2.    Integrated care teams supporting young disabled people should build partnerships with local specialist employment services to support people who use their services to access up to date information and support that is relevant to them.

3.  Future integrated care initiatives must take into account the needs and desired outcomes of working age disabled people, and government should consult with the sector and disabled care users on said future initiatives. We recommend the Government consults our ten principles for integrated support during such a process[3]

4.    The Government must sustainably fund social care so that everyone is able to access the level of care they need.

Introduction

Disabled people below the age of 65 represent one third of all social care users[4]. Social care is an essential service that enables working age disabled people to live independently, to have more choice and control of their lives, and to support basic daily needs, such as getting out of bed, washing, and preparing meals. A proportion of disabled social care users will also have healthcare needs, so an efficient integrated care service that supports those dual needs is critical.

Scope welcomes the Government’s commitment to further integrate health and social care. Integrating these two services has potential to improve both health and independent living outcomes for disabled people, however, existing evidence demonstrates more has to be done to make sure integration works for disabled people under 65.

Analysis by Scope of current integration initiatives has found there are significant flaws in the system, which prevent working age people from getting the best possible health and social care[5]. We have heard from disabled people, such as John, who has told us he has had to choose between living at home with his parents, or living in a residential care home with people several decades his senior, because the care he was being offered is insufficient to support his independence (see the Appendix). The recent National Audit Office (NAO) report into integration is further evidence of how integration requires urgent transformation, so that it can work more effectively for all of its service users[6].

This submission sets out where Scope believe reform needs to be made to (i) improve existing integration initiatives for working age disabled people and, (ii) encourage plans for future initiatives to account for the needs and desired outcomes of disabled people under 65.

Section 1: The impact of integration on working age disabled people

1.1 Background

Integration poses a significant opportunity to improve the health and care outcomes of working age disabled people[7]. Integration can facilitate a partnership between both services, through recognition that some groups of society, namely some disabled and older people, require both care and health support. Integration is also designed to provide a more efficient service for its users.  This is supported through joint working and sharing of information between services. It is also hoped that these improved working arrangements will reduce pressures on accident and emergency departments and general hospital admissions.

Integration has the potential to enable the independent living outcomes for working age disabled people. These outcomes include being able to enjoy family life; being able to participate and contribute to their local community; access education opportunities; and, find and stay in employment.

1.2 The Better Care Fund must meet the needs of disabled people

The primary integrated care initiative, the Better Care Fund (BCF), is at particular risk of failing to meet the needs of working age disabled people. The BCF was first announced in the 2013 Local Government Funding Settlement, with the aim of driving forward integration between health and care agencies at the local level[8]. However, Scope has found gaps in current working arrangements in the BCF, where the needs and outcomes of working age disabled people are not being accounted for.

Analysis by Scope has found that only 14 of the 91 local plans approved in October 2014 included schemes aimed specifically at disabled adults under 65[9]. Additionally, the vast majority of success measures for the Better Care Fund only apply to older people (over 65). This includes the payment by results mechanism (on hospital admissions), three of the four supporting metrics (on residential care, nursing homes, and hospital discharges) and six of the nine recommended local metrics[10].

Scope recommends that the Better Care Fund and any future schemes should implement metrics to measure the care and support outcomes of working age disabled people to be able to respond to care and support areas where improvement is needed.

This is a an uncomplicated intervention to implement, and will lead to improved outcomes for working age disabled people. Specifically, the Government should:

●       Widen the supporting national metric on permanent residential care and nursing home admissions in the Better Care Fund to people aged 18-65.

●       Add existing metrics from the Adult Social Care Outcomes Framework adult social care, on employment, accommodation setting and social contact.

Implementing these metrics will allow agencies to identify issues where outcomes are poor, and intervene in those areas to improve health and care outcomes.

1.3 Supporting wider care outcomes

Scope’s research into the experiences of young disabled care users found 60 per cent are not currently receiving the information and advice they want about employment[11]. It is the duty of care providers under the Care Act (2014) to provide this information for service users, however, for disabled people between the ages of 17-30, this duty is generally not being met[12]. Improving the availability of information and advice in the provision of integrated care services has the potential to support the Government’s objective of halving the disability employment gap[13].

Scope recommends integrated care teams supporting young disabled people should build partnerships  with local specialist employment services, in order to support people who use their services to access up to date information and support that is relevant to them.

1.4 Integration risks not meeting its objectives

The recent report into integration published by the NAO found substantial evidence that the responsible agencies[14] for integrated care must intervene in several operational areas to secure improved outcomes for patients and care users.

First, the needs of health and social care must be prioritised in equal measure to ensure both services are adequately equipped with the resources they need to provide quality care. The NAO outlined that since 2009‑10, council spending on adult social care has reduced by 10 percent , whilst spending by NHS trusts and NHS foundation trusts between 2011-12 and 2015-16 increased by 11 percent. This underscores the growing underfunding social care is currently experiencing[15].  Furthermore, £1.8 billion of the £2.1 billion NHS Sustainability and Transformation Fund for 2016-17 was budgeted to bridge NHS deficits over transformation of both health and care.

Reductions in spending force local authorities to either reduce levels of care (e.g., by reducing people's personal budget allowances) or reduce access to social care altogether. The Association of Directors of Adult Social Services (ADASS) budget survey for 2016 outlined that around 24% of council savings for 2016 will come from reducing care services or reducing the personal budgets of people who receive care and support[16]. Research conducted by Scope in 2015 highlighted the impact of insufficient care and support, which showed some disabled people:

●       Receiving hot meals and drinks on three or fewer days per week; this included people with specific dietary needs, for example diabetics.

●       Only being able to use the toilet once or twice a day; or having to use it unassisted in dangerous ways (such as crawling).

●       Not leaving the house or interacting in social ways with family and friends.

●       Not being able to work.

Second, there is a significant gap in evidence which prevents said responsible agencies from being able to identify and intervene where problems exist. As the NAO has expressed, agencies are yet to establish whether integration does lead to improved outcomes for its users, or whether it meets additional targets to reduce hospital admissions or the costs of care. Scope welcomes the NAO’s recommendation for agencies to establish an evidence base of ‘what works’, that will enable health and care leaders to prioritise resources on initiatives that can secure better outcomes for users of integrated care services. This evidence base needs to include evidence that will lead to better outcomes for working age disabled people.

Third, there is a lack of transparency over how the Government will achieve full integration by 2020, via its initiative known as Integration 2020. Both sustainability and transformation plans (STPs), and the BCF, consist of objectives to enhance integration between health and social care. However, the former is more focused on transformation of health, and the latter focuses primarily on the needs of local authorities[17]. Unless both programmes, and the agencies responsible for delivering them, can align goals and work more jointly, then it is unclear how true integration will work. If full integration is not implemented effectively, it is possible areas within current integration arrangements that require transformation to improve outcomes for working age disabled people will not be reformed (see Section 1.2). This will mean a continuation of the needs of working age people being overlooked.

Integration also requires greater leadership from government with the inclusion of disabled people. As the previous ministerial board aimed at driving forward integration, known as the Health and Social Care Integration Implementation Taskforce, has been disbanded, this has led to a lack of strategic oversight of the integration process at ministerial level. A re-established taskforce that includes disabled people to provide their input will increase the likelihood of a reformed integration that works for disabled people under 65.

As it is unclear whether the needs of disabled people are being adequately taken into account during this process, Scope recommends future integrated care initiatives take into account the needs and desired outcomes of working age disabled people. This can be achieved by Government consulting with the sector and disabled people through continued dialogue on existing arrangements, and also consulting working age disabled people on future initiatives. We recommend the Government consults our ten principles for integrated support during such a process[18]. A re-established Health and Social Care Integration Implementation Taskforce, and the ongoing Cabinet Office Review into social care, may be the appropriate driver for these dialogues.

Section 2: The sustainability of social care

2.1 Disabled people's views of the social care system

Scope research highlights that 55 per cent of working age disabled people don’t think social care supports their independence, and only 18 per cent say it supports their independence consistently[19]. 67 per cent of young disabled people have experienced a significant setback in their lives, including reductions in care and support packages, that have prevented them from living independently[20]. 48 per cent of disabled people say that the choice and control they receive over their support is ‘poor’ or ‘very poor’[21]. For young disabled people between the ages of 17-30, we have found that 20 per cent want to access more information and advice regarding social care and employment, but only one per cent are able to do so. This means fewer young disabled people able to make informed decisions on their care and support, and suggests there is an information gap for this cohort relating to finding employment.

2.2 How to improve the social care system

Government has a responsibility to ensure the social care system works, and this evidence demonstrates how the care system is failing high numbers of working age disabled people. It is local authorities’ role to deliver on the statutory duties set out in the Care Act such as providing quality personalised care, and offering the advice and information that young disabled people require[22]. The Government must play its role in giving every local authority the resources and support they need to provide high quality care. This could be achieved by:

●       Local authorities making care workers and assessors aware of their Care Act duties by using resources commissioned by the Department for Health, and delivered by the Social Care Institute for Excellence, and Think Local Act Personal.

●       Local authorities working closely with young disabled people and third sector partners to create information products that meet the needs of young disabled people.

Scope recommends the Government acts urgently to sustainably fund social care, so that working age disabled people receive the care and support they need to live independently. We recommend this includes providing a package of funding that bridges the funding gap, and takes into account other pressures on the system, such as the national living wage, and increasing population pressures.

Appendix

Case studies of people’s experiences of integrated care[23]

John

I’m 23 and I left [residential college] last summer. I have Cerebral Palsy, use a powered wheelchair that I control with my left hand. I can’t speak so I use my iPad to communicate. At college I got lots of support from staff who showed me that with the right support I could be in control. They helped me learn, provided personal care and helped me take my medication and go to doctors’ appointments. That’s really important for me as I get lots of chest infections. Everything was joined up around me. I started planning what would happen when I left college in my first year. I knew I wanted to live in a house with friends, away from home, and see if I could find a job – like everyone else my age! The college staff and my mum tried to work with social services and the NHS to get me into supported living. But there wasn’t anything suitable back home and they refused to look at things near college. I ended up having to choose between living with my parents or going into a care home for older people. The thought of a care home terrifies me, so I went home. I’m not leading the life I want. I’m isolated, angry and I can’t get out of the house except with my parents. It’s making me depressed and my chest infections are getting worse. I want to be independent, but it just doesn’t feel like the care system is set up for people like me.

Amy

I’m single and in my early 40s. I’ve been blind since childhood. Then I became deaf in my late twenties. I went to a good university and have had a successful career. Now I own my own home in London – a long way away from my family in the North East. For the last 20 years I’ve employed a range of Personal Assistants who can give me the tailored support I need to live independently. The people I’ve employed over the years have changed as my work, social and personal care needs have changed. At the minute I’m working long hours and travelling a lot so I need a PA who is prepared to do that. I need support to communicate and with personal care. My condition also causes me to lose balance and that means sometimes I have accidents at home and at work. I don’t think I see my GP as often as I should – it’s usually not the same person, they often talk like I’m not there and it feels like a waste of time repeating the same information again and again. As I get older, I’ll start to need more support from the NHS and care services. Recently I developed a thyroid problem that isn’t yet under control. This leaves me very tired and makes things difficult at work. I’m determined to stay in my own home though.

Charlotte and Mandy
My sister Mandy is in her late 50s. Mandy has Down's Syndrome and autism.
Sometimes Mandy’s behaviour requires active management and support –
especially when she’s scared, upset or things change suddenly without any
notice. Throughout her life Mandy has been in and out of residential care homes
and in-patient hospitals, mostly paid for by the NHS. That’s not ideal because
Mandy is scared of doctors, hospitals and care workers. Mandy tells me that she would really like to live with family. That hasn’t been possible since our parents got older and died. I live far away, have my own children living at home and don’t have the time, space or money to support her properly. That makes me feel really guilty. Mandy has a limited social life and only occasionally gets taken out by staff. I see Mandy as often as I can but she lives on the other side of the country.

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