Personalised Support

Slides for NHS England

1. What is personalised support?

2. Why is it important?

3. Who might benefit from it?

4. How is it organised?

5. How is it commissioned?

6. What is slowing its development?

7. Can we do something about that?

8. Why Citizen Network?

1. What is personalised support?

• Personalised support is help that is designed with the individual to enable full citizenship.

• Plans may help, but they are not enough.

• Personal budgets help, but they are not enough.

• What is required is respect for the person combined with creativity and action - i.e. work.

ora life of citizenship freedom, meaning,

contribution

Money? Power? Fame?

Wendy Perez

The goal of personalised support is citizenship

Results of international survey on personalised support:

it’s been around a while• 25 Years - Community Living (Australia)

• 25 Years - Spectrum (Canada)

• 24 Years - Durham (Canada)

• 23 Years - Pameijer, Gaandeweg (Netherlands)

• 20 Years - Inclusion Glasgow (Scotland)

• 20 Years - Neighbours Inc (USA)

• 20 Years - Quality Lifestyle Support (Australia)

2. Why is it important?• Good support is personalised.

• Some people achieve this using Direct Payments and by employing personal assistants. But this doesn’t work for everyone.

• Not everyone wants to manage Direct Payments or employ their own staff team. And they don’t need too.

• Personalised support gives people control, flexibility and creativity, without having to take responsibility for everything.

• It is more consistent with human rights and it’s associated with better quality and greater efficiency.

Direct payments, employing staff, managing complex financial relationship with statutory services may not be best solution for…

• People at end of life or with dementia

• People with mental health problems

• People with intellectual disabilities

• People who have other priorities

Have direct payments hit their peak?

There is a different way:

Managed Personal Budgets [sometimes called Individual Service Funds or 3rd Party arrangements]

Inclusion Glasgow worked with people with complex disabilities, moving from institutions to individually designed support solutions in the community.

Research on the work of Inclusion Glasgow demonstrated high levels of efficiency, improvements in people’s lives and lower costs over time.

Choice Support converted a block contract for 83 people into 83 personal budgets - managed by the organisation - ie. Individual Service Funds (ISFs).

This work was associated with reduced costs and improved lives.

Like many service providers, Choice Support were happy to accept short termination periods on that contracts - and the ability of people to end those contracts - instead of risky block contracts subject to tendering and procurement.

Choice Support converted a large block contract into 83 individualised services, with a saving of 28%.

Social workers and support staff came to see the process as personally rewarding.

Other research has demonstrated that increased value comes - not from reducing prices or wages - but by enabling people to use their funding flexibly in the community.

Other research demonstrates the value of flexibility…

http://www.centreforwelfarereform.org/library/by-az/recovery-stories.html

Many people with mental health problems have demonstrated that they want more control and flexibility over their support and that this is associated with their recovery.

“.…to pay for swimming lessons.” [S.S.S.]

“Our hope for the future is that my husband will continue to live at home. Direct Payments plus committed and smart professionals are the key enablers for this.” [Fred]

“This allowed me to have a holiday with my daughter… I also go to the theatre, meals out… hobbies such as card making…” [Carol]

“Personal budgets have enabled us to work in partnership with our service users to identify and access services and resources that are meaningful to their Recovery.” [Mandy]

Recent work in Calderdale has led to the use of ISFs becoming the main way that home care is provided. Over time this is encouraging more innovative and flexible support from service providers.

“One lady banks her hours in order that she can have respite at home rather than going to residential which she is frightened of so her husband can have a week away with his son. Her support changes from 4 calls a day to a temporary live-in service.”

“When a gentleman suddenly became 'end of life' care he requested sleep-ins as he was frightened; the provider reorganised his hours to accommodate this that same night.”

“A lady went to Wales on holiday and the provider purchased support on her behalf from a local agency in Wales.”

“One gentleman has a fluctuating condition and changes the times and staff he wants on a weekly basis to suit his changing needs.”

“This organisation also work with a number of individuals who use their staff and sub-contracted self-employed PAs mixed. Provider staff for personal care and PAs for companionship and social outings.”

We still spend most of out social care funding on residential care (but that is now dropping)

In practice personalised support

is flexible, creative and enables people to

get the lives they really need.

The reason it’s efficient is that it pulls in other ‘resources’ - it is not

just a service transaction.

Along with the improvements in outcomes and efficiency many

service providers are keen to move away from models of contracting that leave them highly vulnerable to large contracts being cut. They would rather have many individual

contracts with short termination clauses than one large contract with a long termination clause.

3. Who is personalised support for?

• In Scotland and England personalised support was often developed around people with learning disabilities with complex needs who could not be successfully supported in group services.

• It is also being used in home care for older people.

• However, internationally it has been used even more widely - for everyone.

Clearly some people like to manage their own direct payment and to employ their own staff. But it would surprising if this was the most popular model for the use of personal budgets and personal health budgets. If organisations were able to offer people control over their own support wouldn’t many more people choose that option instead?

4. How is personalised support organised?

• There may be different ways of organising personalised support; there is no fixed template.

• However there is at least one consistent pattern of organisational behaviour which has a high degree of logical coherence and sustainability over time.

5 Features of Personalised Support:

1. Citizenship is the goal - supporting people to enjoy all their rights as full citizens and to contribute back to the community

2. Fully individualised - service design, planning, housing, staffing and management are all organised around the needs and capabilities of the individual and their family

3. Working in partnership - professionals are respectful of the expertise of the person and their family and they are accountable to them for their work

4. Committed and flexible - professionals do not abandon people when times get tough, they stick with it and figure out the best solutions, changing quickly to get things right and ensuring that funding supports flexibility

5. Creative and resourceful - solutions are identified that build on the person’s real wealth and the resources of their community

Personalised support requires the capacity to individualise most elements of support

Elements (ordered)1. Individual design

2. Creative planning (not standard person-centred planning)

3. People and families making decisions

4. Quality checking by people and families

5. Individualised policies and procedures

6. Matching staff to people

7. All housing options

8. Protected budget (ISF)

9. People & families recruit staff

10.Direct management possible

11.Funder enables flexibility

In Australia shared management is beginning to open up new possible partnerships between people and support organisations

You don’t need to do everything yourself - it’s a partnership

• Note that personalised support does not come from standardised person centred planning tools.

• The hardest thing seems to be to find commissioners or funders who value flexibility.

• Standardisation is the opposite of personalisation. • It is not a matter of being ‘clever’ but of enabling

creativity in a partnership with people and families; but without dumping responsibility on them.

InclusionGlasgow

Individual service funds are not always used by providers of personalised support, but there is a high correlation for those with a long-standing provision of high quality personalised support…

Returning to Inclusion Glasgow recently it struck me that this was also about forming robust relationships where trust could flourish

5. How is it commissioned?• There is an ongoing and international problem

about commissioners enabling providers flexibility

• In principle commissioning flexible support creates no problems; but in practice it proves difficult to get organisational support

• It is important not to confuse contractual flexibility with ISFs (which is a matter of provider practice not contract).

Individual Service Funds were originally designed to enable citizenship for people who needed help managing their own support

In practice most local authorities have failed to create good models to enable 3,4 or 5.

Some providers are abandoning contracts for services, as they are too restrictive. Instead they are relying on work funded from direct payments.

Some commissioners are starting to see that they can contract for flexibility…

There is no reason in principle why personalised support could not be offered by statutory services. Personal budgets could be secured for the individuals and could be managed flexibly in partnership with people or families.

• Choice and Southwark

• Devon and Beyond Limits

• Calderdale and home-care

• Manchester, Imagineer and brokered ISFs

• Leeds and neighbourhood managed ISFs

• Barnsley and managed direct payments

• Dorset and new contractual framework

• New Birmingham initiative

6. What is getting in the way of personalised support?

• Policy in England has been muddled with no clear Option 2 (unlike Scotland) set out in Care Act 2014.

• There is an ongoing problem of trust between providers and commissioners.

• Ongoing confusion about the role and necessity of procurement and unhelpful habits (e.g. commissioning for hours).

• Collaboration and innovation by service providers is very low.

• The NHS is encouraging the use of personal (health) budgets using direct payments or ‘3rd party agreements’.

• In principle 3rd party agreements could function like ISFs.

• In practice they seem to be closer to direct payments and are not being used for organisations to offer personalised support. Instead the budget is ‘brokered’ and people are still employing their own PAs.

England doesn’t count them…

Scotland does…

…confused responsibility & liability

In principle the use of flexible individualised contracts is highly consistent with good practice in procurement. However many statutory bodies seem wedded to highly controlling approaches which do not open up choice, flexibility or the market.

We’ve along way to gobut there is some growth

7. What can we do to help personalised support develop?

• Can we identify providers who really want to do it (or who are already doing it)?

• Can we identify commissioners who want to create the right conditions for it?

• What would be the most helpful steps to take to move things forward locally and nationally?

Case Study: Transforming Care

• There is a high priority to move people out of dangerous institutional care settings; and it is one area where resource levels are high.

• There is real, if finite, provider capacity.

• Are we doing all we can to speed the process and make the best of limited capacity.

• In the last 3 months 25.9% of inpatients had harmed themselves • 21.0% of inpatients had suffered an accident in the last 3

months • 22.2% of people had suffered physical assault in the last 3

months • Physical restraint had been used 34.2% of people in the last 3

months 11.4% had suffered seclusion in the last 3 months • 56.6% of people had been the subject of at least one incident

involving self harm, an accident, physical assault against them, hands-on restraint or seclusion during the last three months

• Antipsychotic medication used regularly or at least once in the last 28 days for 68.3% of the people in the units

YES SOME NO n/a

Are you clear which individuals you will be helping to return home? 3 10 4 7Do you know the budget for each individual that you are helping to return home? 4 4 7 9Can you work alongside people before they return home? 10 6 2 6

Local clinical services and learning disability teams are powerful allies in bringing people home. Are you getting the support you need from them?

7 9 0 8

Are the psychiatrists overseeing a person's placement supporting a return home and providing good advice and support?

4 7 1 12

Is there a willingness to explore all possible housing options and is good housing expertise available? 3 8 4 9

Survey data

No.

The number of people whose budget we know 86

Maximum we could help leave in 2016-17 166

Maximum we could help leave in 2017-18 254

Maximum we could help leave in 2018-19 274

Survey data

• Why don’t we reverse the model and focus on building around existing capacity instead of creating procurement exercises that pretend that there are lots of options for commissioners?

• Why don’t we accelerate the process of discharge by enabling providers to lead the process of individual service design as quickly as possible?

8. Why Citizen Network?

• It’s time to build a bigger global movement to advance citizenship for all

• People can bring about many of the changes they need by sharing and supporting each other

• There are already many people out there willing to work in a different way

We don’t need to give our power

away

Let’s do what citizens do… work together for a better world

FIND OUT MORE:

www.cforwr.org

@citizen_network@CforWR@simonjduffy

fb.me/centreforwelfarereform fb.me/citizennetwork

e simon@centreforwelfarereform.org

www.citizen-network.org