Making Self-Directed Support Work For You

Sam Newman Director – Partners for Change Friday, 24 April 2020

This presentation aims to discuss:

1.

2.

3.

4.

Why do we need Self Directed Support What is Self Directed Support?

How do we make SDS a reality Some things that need to stop as self directed support starts happening And along the way… Some compelling stories about peoples lives and how they can change

A bit about me! I’m a social worker!

     All my work is involved in supporting implementation of personalisation – in England and Scotland.

I was a social worker, then manager in social care.

Led process in England that developed a common methodology of resource allocation – how to calculate a personal budget Led programme in 33 London councils and 15 North of England councils to create fit for purpose self directed support Worked with more than 60 councils to help them transform their way of delivering support to children, families and adults.

Two current pieces of work

1.

Testing a new way of working that makes three offers to people in  need: Information and advice about community resources, networks,  Rapid response to people in crisis aimed at independence  Delivery of any on-going support through SDS and a personal budget 2.

   A new perspective on disability services Co-production with people and families De-commissioning of institutional care – through SDS Doing away with transition – sustainable lives for everyone by 25

1.

Tony’s story – his Mum and Dad

   Unreliable home care - different person, different times, different skills.

Respite – 20 miles away, impersonal.

Meals – but no help Or     Great information and advice Being linked into others in the same situation Emergency support for the tough times A pot of flexible individualised help that can be called on when needed

Why Self Directed Support?

We need to move away from a system where  Older people are expected to end their days in institutions   which however well meaning will always struggle to do a good job It’s o.k. to park younger disabled people in institutions for the rest of their life – low autonomy, low chance of really developing a life that is true to who that person is, limited choice, limited expectations, high cost.

Costs are out of control – driven by specialist placement providers – and a council system that cannot control them

Why we must change

    A crisis driven system – where social workers are too busy to do much more than rush in, prescribe a service and move on.

A system that requires people to make life changing and irreversible decisions at a point of crisis.

A system which is basically saying ‘take it or leave it’ to people who need support. If what we have on offer doesn’t work for you then tough.

A system based on matching peoples needs to a very narrow band of services.

2. What is Self Directed Support

Traditional Assessment

To…

Self directed Support

SDS Bill

      Involvement, informed choice and collaboration Range of options to meet need – not just current ones SDS to be promoted by councils People need access to the help they need to take this up – not take it or leave it.

4 options – direct payment, direct resource, local authority managed resource, or combination The emphasis should be on supporting people to direct their support.

Outcomes of SDS

      Better value for money More community based lives Much wider range of resources and support to help people live their lives Families much more involved in the planning Lower dependency on institutional services Providers have to please people and families – not councils.

SDS as part of a whole system

Information and advice, and Universal Services

Accessible, Friendly, Quick, Information and Advice, Advocacy, Universal offer to whole community, Prevention focussed.

Regaining independence: Short Term Support

Regain independence, ‘re-ablement’, recovery. Minimal delays, no presumption about long-term support, goal focussed

On-going Support

Self directed, personal budget based, choice and control, highly individualised

3. Making SDS a Reality

3. Making Self Directed Support A Reality

A.

B.

C.

D.

E.

Individualise the money Plan support with people differently Work collaboratively with providers Inspire people with what is possible Design a system that works for everyone

A Individualising the money

    We have created the system which is financially unsustainable both in its administration and its outcomes for people Its overly reliant on institutional responses to peoples needs Its massively bureaucratic and unwieldy Less than 50p in every pound gets to people who need support to get on with their lives

So SDS is worth trying!

   Most councils create a mechanism, a resource allocation system that creates a ball park personal budget figure, based on need – that is affordable.

We now know how to do this – the challenge is to spend less time on the minutia of Resource Allocation and get on with things that really change peoples lives.

RAS need to be universal, simple (10 minutes, 10 questions) and sit in an embedded system of self directed support – it doesn’t replace the assessment – but it becomes part of a personalised assessment.

Individualising the money

    It is the game changer – it creates a new conversation.

Instead of plugging in services – people are enabled to think about what is important, what will make the difference – what do they want to do.

Its fair and transparent People answer simple questions about need which are converted to points and then to pounds.

   

Resource Allocation Systems:

     Are simple and easy to use Are based on outcomes not services Suggest a personal allocation (in £) based only on need Always have a contingency – for people who may need a little more Are built with an expectation of equality – but facility to create step downs for some groups Are easily controllable and analysable.

Take the rationing weight away from social workers Guarantee affordability if used correctly A critical and crucial means to an end

Common Resource Allocation System

1.

2.

3.

4.

5.

6.

Meeting Personal Care Needs Keeping Myself Safe Eating and Drinking Making Decisions and Organising my Life My Role as a Parent or Carer Being Part of My Community 7.

8.

9.

10.

Running and Maintaining my Home Having Work and Learning Opportunities Managing my Actions Informal Support and Family Carers

One example: personal care needs

Outcome: I am able to meet my personal care needs

 I do not need any support with my personal care  I need occasional support / encouragement with my personal care(e.g. once or twice a week)  I need some support / encouragement with my personal care (e.g. at least once a day)  I often need support / encouragement with my personal care (e.g. at least twice a day)  I need frequent support / encouragement with my personal care (e.g. several times a day)

     

Carol’s story

Day centre, respite unit, hospital admissions – plan not working.

A personal budget estimate was 15% less than her current cost of service.

She wrote down a description of the support she needed to live a good independent life.

With the help of her council communicated this to 4 providers – telling them what she needed and how much she was prepared to pay.

She chose the one that gave her the greatest confidence that she would get the life she wanted.

This is the double win we are after – better lives for the same or less money

B Plan Support Differently

        Support planning is about lives not services.

People are experts in what counts as a ‘good life’ Many people need much less help to do this than we give them credit for Some people need more help than they are currently getting Social work is not ‘expert assessor’ but adviser/enabler.

People need expertise to help them plan well They may also need help to manage risk – but in a different way Agree the plan – is it legal, reputable – will it work?

Joan’s story

      96, fiercely independent. Live on her own for 35 years Fell over, broke her hip, hospitalised.

Told, whilst in hospital bed that she was ready for discharge and it was not safe for her to go home Transferred to residential home 20 miles away – out of GP area, away from friends and family. House put up for sale.

Died 8 weeks later unhappy and depressed.

What should have happened?

C Collaborate with providers

     The market of support has been shaped by the current ‘non-SDS’ system of care.

Mostly through the pre-purchasing activities of councils – either externally or internally.

It means that people get what we have already paid for or organised.

If people don’t want or like that its tough We need to collect gold dust information about what people really need to live their life – and shape support around that

Practical Examples: Provision

1.

One council created a micro system:    2 commissioners 20 people with brand new personal budget estimates 3 providers keen to learn about this new approach 2.

 5 councils research Identified people who were over 80, significant health episode, unknown to community care.  What is it that keeps these people independent and well

Practical Examples: Provision

      Internal provision reform – take a service you want to change  Individualise the money Give people choice through a personal allocation Help people design bespoke support arrangements Accept compromise Change gradually – unless you can do it quickly Start with the most disaffected people Learn and move on

Providers – the opportunities

    Helping people with the SDS journey Managing and hassle for people Employing ‘PAs’ and hand them over to people Individualise the money providers have and offer SDS

D

Inspire People

    Social Work  SDS is absolutely in tune with the values and principles of social work  People become liberated to be the skilled practitioners they want to be Not in control, not professionally dominant, not calling the shots Not obsessed by the delivery of a service and moving on.

Obsessed with facilitating good lives.

Key job is to connect people with communities, informal support, not just traditional ‘care’

Social worker’s role

      Listening hard, understanding what a good life means Doing all in power to help make it happen A new relationship, a new conversation – ‘what do you want to do?’ Same skills and values – but new application and new journey within which they sit.

Social work needs to be armed with top quality information about what is available, what has worked for others.

Social work needs to be the guarantor for the ‘dispossessed’

Some quotes

   ‘Personalisation has breathed oxygen back into the life of social work’ ‘I am enabled for the first time to do the job I thought I had been given 20 years ago’ ‘I am looking forward to going to work again for the first time in 10 years’

Adam’s story

       Traumatic birth, lots of health problems.

Multiple health assessments – no result.

By age 7 major problems with behaviour, health, social interaction Mum ‘spent years’ fighting for everything – school, respite, speech therapy, disability benefits.

But battles resulted in ‘winning or losing something that didn’t really enhance life’.

Respite was more distressing than it was worth.

Services didn’t fit with Adam or his family.

Adam’s Story

    Life was grim Adam travelled everywhere by taxi or minibus Services made life more difficult but Mum too frightened of being abandoned to question them or turn them down.

Family isolated/excluded from mainstream life.

 Crisis hit – mum seriously unwell, respite stopped – wasn’t working – family at massive risk of splintering. Mum offered expensive out of area residential placement.

       

Adam’s story

Mum turned down placement and asked for personal budget.

Different conversations started – not about services but about what kind of life would work for Adam and his family.

Mum met someone at hospital who liked Adam – and offered respite. Mum used money to connect Adam to people he wanted to be with.

One of Adam’s sisters friends became his PA. Adam started using the bus. His life worked and so did his families.

They saved up some PA hours and went on holiday – the first successful holiday in 17 years.

Adam volunteers to visit lonely older people – he is now a contributor.

E Make sure SDS works for everyone

       It’s not a marginal offer bolted onto current systems.

Its not meant only for the articulate, capable few.

Older people can be bothered – we just need to listen and understand how to make it work.

Make it easy for people – but don’t ruin it Make sure people who have been most excluded and marginalised get a better deal.

Make sure each step of your system can flex and respond to the vast differences and requirements that people will need.

I have never ever met anyone who doesn't want to exercise some autonomy over their lives

It’s also about stopping things

   Stop transferring someone over 65 from an acute hospital bed to a residential or nursing home. Just don’t do it.

Never ever assume that it is o.k. to place a younger adult in a residential or nursing institutions with the expectation that they will be there for the rest of their lives. Enough is enough.

Leave people alone!! Once you have let someone know their estimated personal budget leave them alone for a while – they are the experts, they know best. Our job is to listen and support the delivery of a good life.

Where do you start?

      Wherever you can!! Start now! Tomorrow may never come.

Don’t compromise on what is different – so use personal budgets as a way of ensuring a different outcome.

Give people access to great advice and expertise – but remember they are the experts.

‘Learn by doing’ – create some individual allocations and ask people ‘want do you want to do?’ Build a new way of working around what counts as a ‘good life’ for people who needs support.

Measure success by whether it is good enough for people who you love.

Rosemary’s story

        Polio at 3. Blind in one eye. Paralysed from neck down.

In hospital for a year – had to learn to walk again.

Post polio syndrome = extreme fatigue.

Some cognitive impairment – ‘butterfly mind’.

These are Rosemary’s ‘impairments’ Her disability is the world she lives in – physical, financial, attitudinal.

Special school recommended – Mum turned it down – fought for mainstream school. Rosemary passed 11+, started work at 15, got married at 18.

     

Rosemary’s story

Health problems started to increase.

Long winded assessment = kettle tipper and perching stool.

Then home care hours – but low quality, inflexible, list of ‘prohibited tasks’.

Finally a personal budget put Rosemary in charge of her support.

Her life works – she has a team of 3 people who all work part time hours – very flexible. Rosemary directs what they do – what her life needs in order to work.

This enables Rosemary to work, and contribute – and she usually doesn’t need all of her allocation.

Rosemary’s Checklist

      No labels unless I choose them I want ‘support’ not ‘help’ or ‘care’ I don’t want to have to feel grateful for things – especially things that don’t work very well I don’t want to be special – just equal I don’t want other people making decisions about my life, despite their professional credentials – but I don’t mind being offered advice I am the expert in my life, based on my experience.