It was never really about the money…

The true power and scope of self-directed support

Dr Simon Duffy of the Centre for Welfare Reform 12th April 2016

• People with physical disabilities in the USA in 1960s first began campaigning for independent living and self-directed support.

• Over the past 50 years self-directed support has spread around the world, benefiting different groups, in different places.

• Although this movement is disguised by the complexity of our systems and differences in language and jargon.

• Self-directed support began for people with learning disabilities in Canada in 1970s

• Germany uses self-directed support for the majority of its support for older people

• The USA has had successful trials of self-directed support for mental health

• England has extended self-directed support to children services and to complex health care

The power of self-directed support is undeniable. But one of the big risks (for advocates and sceptics) is that they focus so much on the money that they don’t really see what is happening…

This NOT about buying services, it’s about…

• Building on our passions, capacities and interests

• Connecting with family, friends and peers

• Joining in and contributing to the community

• Engaging with the human spirit

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

“I use direct payments to go to the gym, travelling and volunteering.” [Adam]“The payments enable me to exercise several times a week which has had a really positive effect on my wellbeing as well as keeping me it.” [Ruth]“I now have a purpose on life and hopefully this will lead me to have an independent life in the future.” [Susan]“Straight away I started singing lessons…” [RG]“I used my direct payments to enable me to meet up and spend time with my brother.” [Bernadette]“…he used the money to pay for bus and taxi fares.” [Christine]

“.…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]

http://www.centreforwelfarereform.org/library/by-az/evaluation-of-sds-pilot-in-stockport.html

Areas for using personal budget

Leisure or holidays 38%

Assistance with everyday tasks 29%

Home improvements or cleaning 23%

Access to gym or sporting actvities 21%

Computing or electronic equipment 13%

Help to increase socialising 11%

Transport 11%

Education courses 9%

http://www.centreforwelfarereform.org/library/by-date/active-patient.html

Transportation 13% Crafts 2%

Computers and accessories 12% Licenses/ certification 2%

Dental services 11% Entertainment 2%

Medication management services 8% Vision services 2%

Psychotropic medications 8% Furniture 1%

Mental health counselling 8% Non-mental health medical 1%

Housing 7% Camera and supplies 1%

Massage, weight control, smoking cessation 5% Education, training, materials 1%

Utilities 3% Haircut, manicure etc. 1%

Travel 3% Pet ownership 1%

Equipment 3% Supplies and storage <1%

Clothing 2% Other <1%

Food 2% Total 100%

http://www.centreforwelfarereform.org/library/by-az/health-efficiencies.html

I used to work in the fashion design industry as a product developer until I became ill. This was a hard time in my life. I was diagnosed with paranoid schizophrenia and spent a year in hospital. When I came out of hospital, I moved into supported living and had some help from the Mental Health Recovery Team who were fantastic at supporting me to have the skills I need to be well. I now live in my own place.

I was offered a personal budget and had support to write a plan that said what I was going to spend my budget on to help me meet my assessed needs. At first I used my budget to purchase some support from an agency, which helped me to regain some of my confidence. I’ve now had a personal budget for a few years. It helps me to feel happy again and gives me some confidence to keep moving forwards. It feels different because previously I had services organised for me.

As I am now on the road to recovery my budget has reduced. I have updated my plan myself and this has given me the opportunity to talk about what I want for the future. The opportunity to be creative is very important to me and is something that keeps me well. I now receive a little support and a one off payment which I use to help me to buy equipment to make jewellery. I hope that I will eventually be able to teach other people how to make jewellery to give something back. My goal is to start up my own jewellery business and be financially self-supporting, and the recovery team is helping me with this.

Without the support that I have I would still be wondering where my life is going, but now I have hopes for the future. I would definitely recommend considering a personal budget. You can really make it work for you in a way that I didn’t know was possible. I feel lucky that I have been able to get back some of the life I have lost.

The success of self-directed support in mental health is not surprising when we also consider the ongoing problems in traditional mental health services.

“These findings [better long-term outcomes for schizophrenia in developing countries] still generate some professional contention and disbelief, as they challenge outdated assumptions that generally people do not recover from schizophrenia and that outcomes for western treatments and rehabilitation must be superior. However, these results have proven to be remarkably robust, on the basis of international replications and 15-25 year follow-up studies. Explanations for this phenomenon are still at the hypothesis level, but include:

“1. greater inclusion or retained social integration in the community in developing countries, so that the person retains a role or status in the society

“2. involvement in traditional healing rituals, reaffirming community inclusion and solidarity

“3. availability of a valued work role that can be adapted to a lower level of functioning

“4. availability of an extended kinship or communal network, so that family tension and burden are diffused, and there is often less negatively 'expressed emotion' in the family”

Dr Alan Rosen from Destigmatising day-to-day practices: What Can Developed Countries learn from Developing Countries? World Psychiatry 2006, 5: 21-24

Given how extensive self-directed support for older people in other countries it may seem surprising that progress has been slow in the UK. But good progress is being made in some areas; for example, Angela Gardner has been leading great work on use of ISFs in Calderdale.

“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.”

Other groups that are benefiting from self-directed support include

• Disabled children

• Families with complex needs

• People with chronic health conditions

• People at the end of life

• People with addictions

For the 3 years before 150 days in hospital - responding to problems with breathing.

In the 3 years after leaving hospital he has spent only 2 nights in hospital - for elective dental treatments.

Personalised learning - on the job - 2 City & Guilds Qualifications.

Saving NHS, LA & Education

•Over £100,000 in hospital stays

•Over £300,000 in residential care costs

•Over £100,000 of funding contributed by the LSC

http://www.centreforwelfarereform.org/library/by-date/personalised-transition.html

“A couple of weeks ago in Sheffield, I met a wonderful woman called Katrina. She's got three disabled sons. The oldest is Jonathan, a charming, warm hearted young man of 19. He can't walk or talk clearly, or feed himself alone. He's had a breathing tube in his neck since he was a toddler....

“Now he's doing work with a local charity, attending a music group, has his own personal assistant...

“Finally as a young man, engaged in life in a way he and his mother never thought possible. Katrina told me with the biggest smile I've ever seen, she said: We've gone from having nothing to having everything. I wish every child's needs would be taken this seriously.”

[Nick Clegg, 17 September 2008]

Overall what can we learn from extension of self-

directed support?

• Flexibility is essential progress

• People are looking for a real partnership - not a service

• The best solutions enhance the person’s real wealth

• The starting point for change can be anywhere - peer support, social work, service provision, community organisations

Ultimately it’s about citizenship…

…not just helping people to be citizens - but actually behaving like citizens in our work, in our

lives and in our support for each other.

These findings also raise profound questions about the welfare state as a whole:

• Why are so many people in poverty and unable to access the resources others take for granted?

• Why do professional services struggle to transfer power and responsibility to citizens?

• Who do we seem to keep forgetting what is most important in life?