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Management

Assessment

Learning disability may be identified:

The more severe the learning disability the earlier it is likely to be detected.

Following identification the child is usually referred to a specialist assessment centre for assessment.

Assessment is directed towards the following main areas:

After assessment, children with learning disability undergo regular reviews. Reviews are carried out by a multidisciplinary child health team in co-operation with teachers and social workers. The child psychiatrist liaises with the team and sees children referred with emotional, behavioural and psychiatric problems.

A thorough review is carried out before the child leaves school and assesses the need for further education, mainstream or supported employment, independent living and the need for specialist physical and psychological health care.

Adults with learning disability should be assessed regularly to make sure that they are continuing to achieve their potential and still receiving appropriate care.

Under the NHS Community Care Act 1990 any person with a learning disability is entitled to an assessment of their social care needs. If they are eligible for social care they are entitled to an annual review of these services.

People with learning disability who require active involvement or review will be under the supervision of a community team. Although the majority will have severe or moderate learning disability, those with mild learning disability who are considered at risk will also be under their supervision.

Education

Children with learning disability are likely to have Special Educational Needs [SEN] i.e. need additional support at school. One aspect of the policy of normalisation is that children with learning disability should be educated as far as possible within mainstream schools.

The procedures for dealing with children with Special Educational Needs are laid down in the Special Educational Needs Code of Practice. Local Education Authorities are obliged to follow the guidance in the code.

In a proportion of cases, when the needs of the child are not being met in mainstream school, a statutory assessment is carried out by an educational psychologist. This usually results in a Statement of Special Educational Needs. The Statement specifies the needs of the child, the help required to meet the needs and recommends schools, either special or mainstream, that are suitable for the child.

The majority of children with SEN have mild learning disability and attend mainstream schools

A minority of children with SEN attend special school i.e. one that is just for children with statements of SEN and is likely to cater for children with moderate and severe learning disability.

Since 1992 there has been provision for college education for people with learning disability up to the age of 25.

Employment

Local Authorities are commissioning an increasing range of services to provide supported employment in ordinary work places.

Opportunities for supported employment can be accessed via the Disability Employment Adviser at Jobcentre Plus. Other employment agencies include the Shaw Trust, Remploy and the Mencap Pathway Employment Scheme. The 1995 Disability Discrimination Act protects employees with learning disability.

Accommodation and supervision

People with Mild Learning Disability are likely to live in unsupervised accommodation. People with Moderate Learning Disability are likely to live in accommodation that provides intermittent supervision i.e. can be left alone for prolonged periods of time. People with Severe Learning Disability are likely to live in accommodation that provides regular supervision every day i.e. can only be left alone for very brief periods of time

Over the last thirty years long stay hospitals have closed down and the vast majority of people with learning disability now live in the community.

Community residential accommodation varies geographically but the following may be available:

The person becomes a tenant in their own right in ordinary houses owned by Housing Associations but there are dedicated staff providing support according to individual needs and abilities. The level of support provided varies according to individual needs.

Approved carers provide take people with learning disability into their own homes. Placements may be either short or long term. The level of support provided varies according to individual needs.

Local Authorities, housing associations and the private sector are all involved in the provision of housing to people with learning disability.

Legal protection

In practice, most people with learning disability are supported by family or carers with managing money, budgeting and paying bills. However, on occasion, the following legal provisions may be enforced.

Mental Capacity Act

The Mental Capacity Act 2005 for England and Wales will come into force in 2007. It aims to protect the rights of people whose mental capacity is in doubt and people without mental capacity. The Act states that everyone is assumed to make decisions for themselves unless shown otherwise. If it is not clear whether someone has the capacity to make a decision concerning a specific issue an assessment of their capacity should be carried out.

People without capacity who do not have friends or family to support them will be appointed an Independent Mental Capacity Advocate [IMCA] to represent them in relation to decisions about serious medical treatment or a placement in NHS or local authority accommodation.

People who have capacity can appoint someone under a “Lasting Power of Attorney” [LPA] when they lose capacity in the future. This will replace the existing system of “Enduring Power of Attorneys” except for those people who already have one.

The Act also establishes a new specialised Court of Protection, which will deal with issues relating to the management of property and affairs and serious decisions affecting the healthcare and/or welfare of individuals who lack capacity. The Court can appoint deputies to act and make decisions on behalf of people who lack capacity. A new Public Guardian will supervise court appointed deputies and attorneys acting under LPAs. Guidance on the Act will be provided in the “Codes of Practice”.

Until the Mental Capacity Act comes into force the following legal provisions apply:

Court of Protection

The Court of Protection exists to safeguard the interests of anyone who is 'incapable by reason of mental disorder of managing and administering his property and affairs'. Anyone found on medical evidence to meet these criteria is known as 'a patient'. The Court's duties are normally carried out by appointing a receiver for a patient. The Mental Health Act 1983 gives the Court power to authorise virtually any transaction on behalf of a patient and to do whatever is necessary or expedient for the maintenance or benefit of the patient, his family and dependants.

Power of Attorney

An alternative way of administering the financial affairs of mentally incapacitated people was provided by the Enduring Powers of Attorney Act 1985. Such agreements must be registered with the Court of Protection when the attorney has reason to believe that the donor is or is becoming mentally incapable. By the end of 1996, nearly 34,000 of these agreements had been registered at the Court of Protection. Many others will have been prepared but not registered.

Appointees

If it becomes apparent that the person is no longer able to handle their own affairs because of mental incapacity, the Department for Work & Pensions can appoint someone else to receive the person's benefit and use the money to pay expenses such as household bills, food and personal items. This can be arranged through a system known as an appointeeship. An appointee does not have the authority to deal with capital or other income belonging to the person. Appointees can only deal with the income from benefits, except in the case of small amounts of savings which can be used to meet unforeseen emergencies.

An appointee should in most cases be a close relative or friend or someone who has close and regular contact with the person. In situations where there is no one to act as an appointee social services can take the duty on.

Once someone starts to act for the person under a registered Enduring Power of Attorney or is made a Receiver by the Court of Protection they will automatically take over from the appointee in dealing with any benefits.

Key worker

The primary care team, psychiatrists with a special interest in learning disability and social workers aim to coordinate their efforts to provide for the health and social needs of adults with learning disability. Many agencies can be involved, and it has been found that the appointment of a key worker can help a person with learning disability to get help when it is needed.

Family support

The birth of a child with learning disability puts great strain on most families. The parents may grieve for the loss of their anticipated healthy child. The additional physical and financial burdens of caring for the child may lead to marital disharmony. However the majority of families eventually adjust with support from health care professionals, social workers, teachers, family, friends and self help groups.

Families are likely to need extra help during the transition from children to adult services. Additional care may be required to relieve carers and to encourage the person with learning disability to become more independent.

Self help groups

People with learning disability and their carers can share information and gain support from others with similar experiences. These groups also aim to influence the provision of services and facilities for disabled people.

Prevention

The availability of genetic counselling and antenatal diagnosis of conditions such as Downs Syndrome has led to a reduction in the incidence of some learning disabilities. Improved care around the time of birth reduces the risk of brain damage. The early detection of hormonal or metabolic problems such as hypothyroidism or phenylketonuria allows treatment before learning disability sets in.

There is some evidence that educational intervention in children of mothers with mild learning disability may improve their educational performance [though not IQ] and reduce the risk of conduct disorders.

Outcome

Overall, people with learning disability are living longer and enjoying a better quality of life because of improvements in health and social provision.

Mental Health Act

Section 25 Supervised Discharge

Supervised discharge is an arrangement by which a person who has been detained under a section of the Mental Health Act 1983, and who pose a substantial risk of serious harm to the health and safety of themselves, or the safety of others, or are at risk of being seriously exploited, can receive formal supervision in the community after discharge.

Requirements imposed by Supervised Discharge include; That the person should live in a particular place; or should attend a particular place at set times for medical treatment, occupation, or training; or that the supervisor, or a person authorised by the supervisor, should be allowed access to the person at the place of residence.

Guardianship Order

Some people with severe mental illnesses can be received into guardianship. This is used in the interests of the welfare of the person or for the protection of others. The guardian can specify where a person lives and the place where someone attends for medical treatment, work or education. In addition the guardian can specify that a doctor, social worker or other specified person should have access to the person. Guardians can be either a named individual or a social services authority.

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