Self-directed Support Implementation Study 2018: report 2

Alzheimer’s Society 2011 (1)

England

Survey point in 2010

Individual budgets

Personal budget managed by a third party or direct payments

Dementia

Arksey 2012 (2)

England

2007-2009

‘Choice and Change' study of Direct Payments

Direct payments

Disabled people with fluctuating or degenerative care

ADAS 2009 (3)

England

Survey point of 31 March 2009

Individual budgets

Personal budget managed by a third party or direct payments

All

Baxter 2016 (4)

England

2011-2012

Individual budgets

Personal budget managed by a third party or direct payments

All

Brooks 2017 (5)

England

2011-2013

Individual budgets

Personal budget managed by a third party or direct payments

Carers

Carers 2012 (6)

England

2011-2012

Individual budgets

Personal budget managed by a third party or direct payments

All

EHRC 2017 (7)

England

2017

Individual budgets

Personal budget managed by a third party or direct payments

LGBTQI+ disabled people

Hatton 2015 (8)

England

2015

Personal Health Budgets

Personal health budgets are an allocated sum of money to help people meet their identified health and wellbeing needs, as planned and agreed between the person and their local NHS team.

People in receipt of a personal health budget

Fisher 2010 (9)

Australia

Unclear.  Possibly 2009

Individual Funding

Portable package of funds that can be spent on a range of disability support types.  The elements that are portable and range of support the budget can be used for varies from state to state.  Can be managed by a third party or taken as a direct payment

Disabled people

Woolham 2017 (10)

England

Unclear.  Possibly 2016

Individual budgets

Personal budget managed by a third party or direct payments

Older people

Alzheimer’s Society 2011 (1)

Number offered a personal budget or direct payment

Sample survey

NR

NR

NR

Difference in outcomes for different service user groups and different methods to capture these outcomes

Arksey 2012 (2)

NR

NR

What is the experience of using direct payments over time?

Longitudinal study of 30 people in receipt or offered direct payments.

NR

Shows importance of long term monitoring and evaluation with several key issues developing over time

ADAS 2009 (3)

Engagement with market providers and market development, number of people in receipt of PBs, total expenditure on PBs and as percentage of all expenditure, number of authorities supporting self-assessment

Survey of all assistant directors of social care in England

NR

NR

NR

High level survey of all local authorities asking for basic quantitative information on performance around personal budget agenda

Baxter 2016 (4)

NR

NR

What are the experiences of front line practitioners, managers and support planners in facilitating choice and control for older people

Interviews with commissioning managers, home care agency managers and older people (30 interviews in total).  Focus groups with home care agency managers.  Covered three local authorities

Insufficient breadth given only three local authorities

Highlights importance of including service providers and 'middle men' in research

Brooks 2017 (5)

NR

NR

How are carers involved in support planning, resource allocation and ongoing management?  How are carers supported separately?

Survey of 16 adult social care departments and interviews with lead offices.  Thematic analysis of findings

NR

Highlights importance of capturing impact on carers

Carers 2012 (6)

Percentage of carers receiving personal budgets, how they are assessed for PBs, the use of Resource Allocating Systems by local authorities (including fixed upper limits), what local authorities allow carers to purchase

Survey of all local authorities in England (92 responded)

NR

NR

NR

Simple survey of authorities but with relatively high completion rate

EHRC 2017 (7)

NR

NR

What is experience of LBQTI+ disabled people with SDS?

Survey (numbers unclear)

NR

Important to consider issues of equality in the evaluation

Hatton 2015 (8)

Method of budget management, personal health (Likert scale), length of time with budget, value of budget, difficulty in process, impact on people’s lives in 15 dimensions (Likert scale), how budget was used

POET (Personal Outcomes Evaluation Tool) - a self-reported user experience survey tool used at the time the health budget is renewed.  Separate tools for service users and their carer

What works well?  What does not work well?  What would they change?

Three free text questions in survey

NR

The surveys were deemed evaluation rather than research and so did not require research ethics approval.

Fisher 2010 (9)

Monitoring information on use of Individual Funding (demographic and disability data on users).  Perception of outcomes of managing risks and benefits, ability to choose their support, satisfaction with help choosing support and flexibility, frequency of community activity, service provider perception of client control over funding

Questionnaires handed out by researchers but returned by post, email or telephone interview.  Managers in services were asked to identify 10 people at random that could complete the questionnaires.  Questions were designed based upon what was found to be important from a literature review with responses on a Likert scale.  Made use of nationally collected data sets for high level stats on usage. An 'easy English' version of the survey was also available that had simpler scales.

How well is Individual Funding performing from the perspective of people with disabilities, service providers and government agencies?

Face to face and telephone interviews with service users, service providers and government agencies.

NR

Mixed methods evaluation with quite a small sample size for national evaluation where there could be marked difference in method of implementation across states.  Interesting approach to questionnaire design by using a bespoke tool based upon what literature had deemed to be important.  Problems in Australia about how funding is recorded and in method of implementation meaning national routinely collected data was not especially robust which is the same in Scotland

Woolham 2017 (10)

Budget amounts.  Ease of using budgets and adjusting care required.  Health and social care QoL.

Postal survey using bespoke questions on budget and management of care.  EQ5D, ASCOT and Sheldhon Cohen Perceived Stress Scale

NR

NR

People may not have known whether they received a managed budget.  Survey was limited to three sites.  Low response rate to survey

Interesting use of combination of bespoke and pre-existing surveys.  Highlights importance of ensuring that difference in outcomes by different options chosen should be assessed and that evaluation should not just consider the initial choice but how easy that choice enables flexibility in adjusting care

Ecdp 2011 (11)

England

2008-2011

Self-directed support

All

Personal budgets as cash payments

Heller 2012 (12)

USA

One off survey in 2011

Home Based Support Services Programme for Adults (HBSSP)

Disabled adults with learning difficulties

Personal budget used to hire personal support workers

Ecdp 2011 (11)

NR

NR

What is impact of personal budgets on service users, carers, families and providers

Three-year longitudinal study.  Methods are not reported but appears to be a survey

NR

Highlights the breadth of areas needed to be considered in an evaluation and how the impact on the same individuals over time needs to be evaluated

Heller 2012 (12)

Mental health and physical health of person with a disability.  Satisfaction with services across 19 items on a Likert scale

Caregiver survey adapted from published survey by Matthias and Benjamin (2008).  Disabled person survey adapted from SF12

NR

NR

Asked primary care giver to complete survey and so maybe there was responder bias with an over representation of parents in the sample

Identifies some potential surveys and important areas for an evaluation to address about the difference in experience by type of person employed

Arksey 2009 (13)

England

2006-2008

Individual Budgets Pilot

Carers

The IB pilots were to experiment with different ways of managing and using IBs. As well as direct cash payments, other possible arrangements included care manager-managed ‘virtual budgets’; provider-managed individual service funds; payments to third party individuals and Trusts; and combinations of these.

Arntz 2011 (14)

Germany

2004-2008

Personal Budget Demonstration

People in receipt of long-term care insurance payments

Personal budgets made as cash payments for people on LTCI.  People could choose a mix of cash payments and services with support to self-direct their home care.

Ettelt 2014 (15)

England

2013-2016

Residential care trailblazers

People in residential care

Direct payments to care home residents

Glendinning 2008 (16)

England

2005-2008

Individual Budgets Pilot

Older people or other adults

Direct payment, notional budget managed by council care manager, third party or trust fund, giving budget directly to a service provider.  Support provided on how to make choices and understand budget management and service costs

Graham 2015 (17)

England

2011-2014

SEN&D Pathfinder programme

SEN and disabled children and their families

Assessment process, joined up EHC plan and personal budgets across education, social care and health for people up to age 25

Prabhakar 2011 (18)

England

2008-2011

Individual Budgets

Disabled children and families

IB could be delivered as direct payment, through a budget holding lead professional or through a personal budget (essentially mixture of the two)

Arksey 2009 (13)

General health (GHQ-12), QoL (Bowling), ASCOT, COPE Index, self-perceived health and satisfaction with care

Surveys completed via telephone interview with 100 carers

Support arrangements, carers involvement in whole PB process, payments made to carers from budgets

Semi structured predominantly face to face interviews with 24 carers

NR

Carers element of larger evaluation

Arntz 2011 (14)

Summary health outcomes

Index of care needs (author developed and user completed).  Self-assessed satisfaction with current health situation questionnaire

NR

NR

NR

Highlights complexity in identifying differences arising from IB.  Substitution between informal and formal care and types of provision important finding.

Ettelt 2014 (15)

Based upon a logic model.  Number offered and accepting direct payments, numbers of homes participating, payment amounts.  ASCOT tool as part of survey to assess outcomes and change in outcomes over time.  A separate question from Adult Social Care Survey on activities of daily living

Electronic survey of service users/carers/families and providers

What ways are direct payments offered and what challenges are faced from implementing them to all stakeholders?  What are the impacts of direct payments on the care home market and service users?

Electronic survey of service users/carers/families and providers.  Semi structured interviews with local authority and care home staff and service users.  Case studies

Uptake of programme was very low meaning survey responses were similarly low

Stated aim was to do an economic evaluation but this did not really happen.  Some costs were collected but not presented in any great detail.  Only half the councils provided cost information and it appears scant.  No real economic evaluation undertaken with limited data collected.  Highlights challenge of evaluating SDS across different settings and if uptake of different options is very small

Glendinning 2008 (16)

General health (GHQ-12), ASCOT, self-perceived health, overall satisfaction with arrangements (Likert scale), value of budgets

GHQ-12 and ASCOT questionnaire as well as survey questions in an RCT design

Do IB offers a better way of supporting older people and other adults with social care needs? How have IB been implemented?   What is experience of using IB on different groups of services users and carers?  What are wider consequences of IB on adult social care and other services?

RCT.  Semi structured interviews with service users, workers and project leads and other managers responsible with delivery and implementation.

Most people did not change the support provided.  There were changes in funding occurring at the same time as implementation of IB.  Cherry picking of individuals by pilot sites of people thought most likely to take up IB or require less preparation and assessment

Key national evaluation from England.  Important points include concept of Resource Allocation System (RAS) to determine the value of their budget which involves assessment of need as well as how this translates into an equitable share of the local authority’s overall budget (in England In Control was used).  Limitations also noteworthy but excellent attempt at outcomes capture and economic analysis although may be difficult to replicate in a national evaluation of existing scheme

Graham 2015 (17)

Parent reported health and QoL of self and child.  Satisfaction with services

Telephone survey of 689 families in pathfinder and 1000 in a comparator group matched with propensity scoring

What is experience of assessment and support processes?  What is the experience of delivery of care?

Baseline interviews with 77 families with longitudinal interviews with 40 of these families

NR

Attempt of cost effectiveness ratio on 'more satisfied' families and in trying to estimate parental and child quality of life - albeit on a Likert scale.  Telephone interviews appear to have been successful in volume completed

Prabhakar 2011 (18)

Quality of life, choice available, control, satisfaction with services

Survey with Likert scale

What are families’ experiences of using IB?

Focus groups

Cost of pilot and set up

Different approaches to evaluation may be required for different client groups

Campbell 2011 (19)

England

Not clear but appears to be 2010

Support Advocacy and Brokerage (Independent Living Strategy)

Disabled people

User Led Organisations (ULOs) who undertook support planning with individuals and in some cases provided brokerage services.  All provided informal advocacy

Campbell 2011 (19)

Range of outcomes for individuals including Home life, employment, leisure, health participation, transport, education and security.  Management information and market outcomes including LA expenditure and user characteristics.

Each pilot site agreed the data that was to be collected with each site signing up to an evidence grid so they understood why what was being collected was required.  Service user outcomes and satisfaction were collected as part of the qualitative interviews on a Likert scale

What evidence is there on the effectiveness of the intervention?  How satisfied are people with intervention and support received?  Are experiences of the intervention positive?  Do people have more choice and control in their lives?

Interviews with 40 service users (at two time points) in the intervention group and 40 in a comparator group

NR

Mixed methods evaluation.  Hard user outcomes were survey based and self-assessed.  Difficulties on getting total costs of services provided by LAs due to diverse range of services used although all ULOs were able to identify total resource and so a unit cost of their activity could be calculated