Part of the community?

Small homes allow people to develop true friendships and be part of wider society. However, recruitment issues in an age of austerity present a genuine danger we may recreate institutional ways, fears Peter Rainford

 

The pioneering work to get people out of large institutions and integrated into communities of the 1980s and 1990s was strongly values based, using the teaching of Wolf Wolfensberger (1973).

Such values and practice included respecting people’s privacy in their own homes, with staff not automatically having keys but instead knocking on the door and asking for permission to come in. This may seem a small matter but, as someone who has lived in a supported group home during a period of ill health, I can attest that having staff entering without knocking is a powerful daily reminder of your disempowerment.

When I worked at provider organisation Integrate, spare keys were held at the office for emergency use only. If staff are given keys to people’s homes, the risk is they will use them routinely.

People were also supported to have a community presence through engagement with local activities and groups, even if this meant some community development work to establish a new local resource. Local people came along to a “sewing circle” set up by an Integrate staff member in a Preston community centre, including Ms A, a keen sewer who soon became an accepted and valued member of the group.

When Ms A was accompanied by a different staff member, this employee reported back to the director that the sewing circle was very cliquey. “Oh dear, was Ms A excluded?” the director asked. “No, she is very well in with them all – I was the one excluded.” That remark still makes me smile because it is such a powerful indicator of successful integration.

‘Your lot’: size and integration

While one or two people with learning disabilities can easily become accepted and welcomed members of an existing activity group, larger numbers will almost always be viewed as a group – often negatively so – and excluded. This may even happen where a person is already part of a group.

When a local learning disability team took a group to an old time dancing club which had two long-term members with learning disabilities, these two members were almost immediately told: “Your lot are over there.”

So we know that numbers are important to integration. Austerity cuts, combined with a recent ruling on sleep-in payments, means we are sadly seeing bigger schemes, or lots of people grouped in blocks of single flats with one on-call night employee. This is incredibly short-sighted as it absolutely mitigates against integration.

We need creative solutions, such as organisations renting a one-bed flat close to several homes as a sleepover place and staff base. At Integrate, this model was built into early developments, allowing safe, gradual withdrawal of sleepovers, which increased independence and reduced costs.

We all take it for granted that we have people in our lives who are not paid to be with us but, for many people with learning disabilities, this is not the case.

Helping people develop a strong friendship circle is one of the biggest challenges facing services, and it seems to me that some simply give up or do not start in the first place.

A good way to begin is with volunteers with shared interests. At Integrate, a volunteer called for a fellow football fan on his way to watch Preston North End play every home game and, gradually, a friendship developed. Friendship groups and a real community presence are better protection from poor standards of care, disrespect and abuse than any inspection system – abuse thrives on isolation.

The loss of people who hold these values and their replacement by staff with little time or knowledge, along with austerity and the use of often distant assessment and treatment centres, have combined to create a situation where indifference prevails and where the old institutions are being recreated. We can counter this only by speaking out and supporting others who do so, as with the #JusticeforLB campaign.

The recruitment of good staff with the right values and respect for the people they work with is by far the biggest protection against poor services. Whatever the difficulties, we must stand firm on recruitment standards.

One person who inspired me with his work and values was the late activist and academic David Brandon. He once suggested a test for staff quality – “How many of these people would you allow near someone you love?” Apply the Brandon test and, if you cannot answer “yes”, do not recruit the person. n

Peter Rainford is digital inclusion officer at Disability Equality North West and a wellbeing, recovery and mental health activist. He worked in social core for 30 years, including at Integrate (www.integratepreston.org.uk) and Imagine (www.imagineindependence.org.uk)
t @peterjrainford

References

Wolfensberger W (1973) The Origins and Nature of our Institutional Models. Human Policy Press, New York