Northern Ireland (Severe Learning Disability) (Hansard, 30 June 2004)

§ Rev. Martin Smyth (Belfast, South) (UUP)

I beg to move, That leave be given to bring in a Bill to make provision for identification of persons in Northern Ireland with severe learning disability; to make provision for the assessment of their health, social care and other needs; to make provision for appropriate services for such persons and for independent advocates to act on their behalf; and for connected purposes. A learning disability is a lifelong condition acquired before, during or shortly after birth, and can affect someone's life in many ways, causing difficulties in learning, communicating or doing everyday things. Two per cent. of the population—or 33,000 people in Northern Ireland—have a learning disability. Just over 16,000 people with a learning disability are in contact with health and social services.

This Bill defines someone with a severe learning disability as any person aged 16 or over who has been recognised by a competent professional as having severe impairment of intellectual ability with associated impairment of social and economic competence, originating before birth, at birth or before age 10. In 2000, there were 1,671 children in the severe learning disability education sector, of whom 325—some 19 per cent.—were profoundly disabled.

Currently, people with a learning disability should have an assessment of their needs in accordance with section 4 of the Disabled Persons (Northern Ireland) Act 1989. Those provisions, however, are less formal, with an outcome that is less clear, and with considerably weaker accountability than those in the proposed Bill. The Bill's provisions on entitlement to services are similar to those in section 3 of the Act, which is entitled "Assessment by Boards of needs of disabled persons". Section 3 has never been implemented, and it seems unlikely to be implemented for all disabled people owing to resource issues. I am introducing the Bill because the needs of people with severe learning disability, their parents and carers are so pressing. Section 1 of the Disabled Persons (Northern Ireland) Act 1989 provides for the recognition of individual advocacy agreed with the disabled person, but that, too, has never been implemented. I therefore bring this Bill before the House because it is important, in my judgment, that those people are looked after.

The Bill confronts the problem of the allocation of, and access to, services for people with a severe learning disability. It also confronts the problems that carers and parents encounter in their struggle to ensure that the person for whom they care has the best possible services. People with a severe learning disability face huge obstacles in accessing the services that they require. There are very real problems of communication. They use a wide range of health and personal social services, reflecting their specific needs. They begin their lifelong service-using careers at birth or in early childhood. They and their families are likely to rely on a range of social care services, including social work support, the development of social and living skills, long-term housing and support services, practical help in everyday 304 care and personal assistance with everyday tasks, as well as access to services for families needing a break from caring.

In contrast with other people who use health and personal social services, services provided for people with a learning disability may be concerned with encouraging independence and learning new skills. Services are provided not to prevent something, or because someone is no longer able to do something, but to develop and build on the individual's ability to maximise their potential. Families are often so caught up with providing much needed support or care that they remain isolated and not informed about services or opportunities for support that are available. People with a severe learning disability must be empowered to help them to live a full and healthy life. They require personal and specific support to lead that full life.

At the same time, caring for a person with a severe learning disability is a lifelong responsibility. Often, there is an over-dependence on family support, which can leave families' lives unacceptably restricted. We need to replace core family support with independent support that increases the individual's contact with the community. The aim is to ensure that the horizon of the person with a learning disability is not restricted by the family's front door.

We must recognise the needs of families as well. The frustration that they experience often leads directly to stress and exhaustion. They have to fight for services again and again. Rather than having easy access to services for the person with a learning disability, many parents find that there is a postcode lottery—that the quality of service depends on where they live rather than on what they need.

There is a difference between the legislation in England and that in Northern Ireland. The Bill provides a route to services, as well as clarity about what is needed. In contrast to provision by the Department of Health in England, there seems to be little published information in Northern Ireland about the criteria used to decide whether people are eligible for services. For instance, on 14 March 2004 the Department of Health produced a document called "Fair Entitlement to Care Services", containing guidance on eligibility criteria for adult social care. Northern Ireland has no community care Act, and the "people first" policy that is our equivalent does not have the same strengths. Eligibility under community care provisions is related to the breakdown of family support and the need for residential care. "People first" does not cover the full range of needs in Northern Ireland.

Parents, particularly those whose children are leaving school, face problems in finding their way through the maze of needs and services. They must move from a relatively structured education environment, with well-established points of contact and relationships, to adult health and social services, where they will have to negotiate a system that is fragmented, diffuse and diverse. There is no clear process to help them identify their needs and those of the person with a learning disability. The difficulties are compounded by the absence of any clear statement of what services will be provided in response to the identified needs. As a result, families must fight to retain services. People with learning disabilities and their families require a clear process, involving clear statements about needs and the 305 services that will be provided to meet those needs. Many parents talk about the build-up of stress when they must care for an increasingly unhappy family member 24 hours a day, 365 days a year, year in, year out with no respite.

The Bill aims to provide a definition of severe learning disability; an entitlement to an assessment of needs for people with severe learning disability, carried out by a responsible agency; an entitlement to implementation of the recommendations of the assessment by a responsible agency; and an entitlement to an independent advocate to support the person with a learning disability in the processing of the assessment and its implementation. It aims to achieve identification and recognition of the needs of people with severe learning disabilities.

Question put and agreed to.

Bill ordered to be brought in by Rev. Martin Smyth, Mr. David Amess, Mr. Roy Beggs, David Burnside, Mr. Jeffrey M. Donaldson, Mr. Tom Clarke, Lady Hermon, Mr. Eddie McGrady, Lembit Öpik and Mr. David Trimble.