Director Linda Headland summarises ELCAP’s contribution to the development of East Lothian services to people with learning disabilities, 1989-2000.
ELCAP (an acronym for East Lothian Care and Accommodation Project) came into being officially on 10 March 1989 when it was registered at Companies House as a not-for-profit company, limited by guarantee. It then successfully applied to the Inland Revenue to be recognised as a charity. The work leading up to registration had been led by a steering group of people active locally in health, housing and the voluntary sector, together with parents of people with learning disabilities. This group had come together around the Joint Planning agenda and had focused on finding ways to help people move on from the three local learning disability institutions; two local authority hostels (Prestonkirk at East Linton and Wedderburn at Inveresk in Musselburgh) and an NHS Unit (Hopetoun in Haddington).
ELCAP was set up with a Management Committee of 17, of whom three were nominated by Lothian Regional Council (Social Work), three by the District Council (Housing) and three by the NHS (East and Mid Unit). The balance was made up of local voluntary associations, housing associations and individual parents (who were members of ELCAP). In 1996 the Constitution was amended to remove the statutory nominations to the Management Committee and replace it with election from the membership to a twelve-person executive Board.
In 1989, residential provision in East Lothian for adults with a learning disability was split across the three sites of Prestonkirk (24 bed hostel), Wedderburn (16 bed hostel) and Hopetoun (72 bed hospital) (with the exception of two ten-person houses run by Ark Housing Association). In January 1990 ELCAP signed a contract with Lothian Regional Council which resulted in ELCAP assuming management of the two hostels, which would be run as registered care homes until 1993, by which time all the residents would be supported in mainstream housing and the hostel buildings returned to the Council. The hostel staff were seconded to ELCAP with the option to transfer into other Lothian Regional Council posts, take up ELCAP contracts or remain on secondment. In fact the last secondment was ended on 31 May 2001. As residents in a registered care home the people living in the hostels were entitled to a higher rate of benefit. This, together with the existing hostel budget which ELCAP managed, created the bridging finance which allowed the community based support to be built up as the hostels were gradually emptied.
In 1991 ELCAP was invited by the East and Midlothian NHS Trust to prepare a proposal for entering into a similar agreement with Lothian Health Board for the management and replacement of the Hopetoun Unit. This led to a contract, signed in 1992, to help the residents of Hopetoun move to housing based support within five years. By 1999 East Lothian had achieved a housing-based service to people with learning disability. Hopetoun was the first of Lothian’s hospital closures [learning disability] and East Lothian was the first Scottish local authority to completely replace its institutional provision with a housing based service. The accommodation in use ranged from single person flats to households of four people sharing, rented from ELC, or local housing associations or private landlords, or owned by ELCAP. Some was from pre-existing housing stock, some purchased and adapted, some purpose built. Funding was a mix of Scottish Homes Gro-Grant, Scottish Homes Shared Home Ownership grant, NHS Bridging Fund and ELCAP development fund.
Since the hostel service had included provision for respite and emergency support, the replacement service which ELCAP created also made this provision. A residential short-stay (respite) service was first carved out of the Prestonkirk arrangements and moved to a six-bed house in Haddington in 1991. This provided four places for bookable short-stays and two for emergency stays. In 1994 this service moved to a seven-place house in Tranent which included a ground-floor fully accessible suite, thus opening up the service to wheelchair users. From a 40% occupancy rate in the four beds in Prestonkirk, the service quickly grew to a 90% plus occupancy rate in Tranent. By the millennium demand was falling owing to a combination of other services opening elsewhere in the Lothians, and younger families wanting a more individual and activity based service. In 2000-2001, ELCAP supported 105 people (long-term); provided 1740 bed-nights of residential respite care (for 47 people); three people received separate day service; and 11 people were supported under the Care-at-Home provision. The total expenditure for the year 2000/2001 was £4,317,183.
Almost from its inception, ELCAP was aware of the need to help people settle into new neighbourhoods and become part of the community. Where possible, people were supported to return to their community of origin, where they might still have connections, be remembered, or find something familiar in the location. This paid off, most notably when one attempt by local (‘incomer’) residents to object to a proposed move into a private housing development was very firmly quashed by long standing local families. The new neighbours went on to develop very positive relationships with the original protesters. People were also supported to find and use local services and facilities which matched their interests. Where none existed, staff supported people to set up new activities which benefited them and the wider community. This widened the opportunities for people who had lived segregated lives to broaden their interests and their social circles. Similar attention was paid to supporting, and in some cases re-creating, family links. In addition to the paid staff a total of 36 volunteers were recruited and matched to support service users.
Over the years people’s needs and wishes change, and ELCAP’s understanding of individual communication and behaviour deepens. This has led to many of the shared group home situations breaking up and people moving to more individually appropriate settings, with whatever level of support is then appropriate to their needs. This trend will continue, supported by the policy statements in the ‘Same as You’ report from the recent learning disability review, the changes in the regulatory system for social care, the development of disability related legislation and ELCAP’s commitment to person-centred services. It has played a major part in the transition from institutional care, earned the trust of families and acted as a trailblazer for initiatives elsewhere in Scotland.