For decades the system, or more accurately local strategic direction, has been putting or threatening to place people in secure settings.
Usually this is about options, risks or perceived risks. The act of placing someone in a secure setting is an admission of failure to listen to the aspirations of the person and their family and friends. It is a failure to develop and offer great support within community.
The impact on the person, their family and community is negative, frequently catastrophic and always traumatic.
More than 2,000 people with learning disabilities and/or autism are in inpatient units in England, according to NHS figures.
Segregation by design
Government initiatives that have started with a belief that it is possible to improve segregated services have tended to be abject failures. You cannot retrofit human rights and an individual-centred approach into spaces and systems designed to separate and control.
Breaking local beliefs and fears around procurement processes and having conversations about something that feels new can be hard
Frustrated with NHS England’s Transforming Care programme to move people from inpatient units and into homes in the community, around five years ago, the National Development Team for Inclusion (NDTi) went out to find local support organisations which seemed to be getting it right.
We wanted to understand what enabled people who needed to get out of or who were at risk of secure placements to thrive.
Finding what works
We connected with a handful of leaders who were developing services around the person, in their community and in a sustainable way that provided value for money.
Drawing in the Local Government Association, together with support providers Beyond Limits, C-Change and Positive Support for You, we formed the Small Supports Partnership.
As a partnership, we recognise small supports have several characteristics (see box, below).
We’re working with 11 local agencies at varying stages of development and, over the coming three years, we will be working with 20 more.
Eleanor Roosevelt said it best in 1958: “Where after all, do human rights begin? In small places close to home, so close and small that they cannot be seen on any maps of the world. Yet they are the world.”
Over the last couple of years, we have been working with local agencies to try to understand how small supports can be encouraged and sustained.
Nationally, many of the systems for planning and commissioning services are broken, hampering rather than generating creativity and innovation. However, what exists can be adapted to find and encourage new leaders, develop small organisations and offer the right funding.
Locally, this requires creativity and commitment from commissioners who will walk alongside people and their supports, political will and, above all, the trust of people and families.
The biggest difficulties have been finding and supporting people willing to able to step out of more traditional roles.
Breaking local beliefs and fears around procurement processes and having conversations about something that feels new can be hard. There are some small supports organisations celebrating their 20th birthday, so we know it can be done.
Michelle, who would rather not give her surname, is supported by Positive Support for You in Teesside. She is celebrating 10 years of renting her own home; she was previously in a long-stay hospital. Michelle is now looking forward to buying her own forever home.
She says: “I am a lot happier living in the community and having support so I can do the things I enjoy, like going for walks and shopping for things for my home.”
Bill Love is director of delivery and impact at the National Development Team for Inclusion