Learning disability – Past, present and future

This article was written in April 2013 and was never published?(until now)

I have added some updated comments on my predictions from 10 years ago in italics

Learning disability – Past, present and future

Learning disability services have never been more in the public eye. The latest government “policy” announced in late 2012 was the phased closure of the hospital type residential services for people with learning disability. In this article we look at the historical provision for those with a learning disability and forecast what future service provision may be.

What is a learning disability?

A learning disability is a reduced intellectual ability and difficulty with everyday activities, for example, household tasks, socialising, or managing money which affects someone for their whole life. People with a learning disability tend to take longer to learn and may need support to develop new skills, understand complex information and interact with other people. The level of support someone needs depends on individual factors, including the severity of their learning disability. Learning disability is often confused with dyslexia and mental health problems. Dyslexia is best described as a “learning difficulty” because, unlike learning disability, it does not affect intellect. Mental health problems can affect anyone at any time and may be overcome with treatment, which is not true of learning disability. With appropriate support, most people with a learning disability can lead independent lives.

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Learning disability through the ages

Today, services, which provide support for people with a learning disability, are designed to work in an empowering manner to support maximum independence and self-determination. However, this has not always been the case. Through the ages, people the attitude of society towards people with a learning disability has varied from supportive to abusive. For example, the fools of the early Tudor court were likely to have been people with learning disabilities. There is evidence in historical records to show that learning disability existed in the past. The causes were then as now congenital, chromosomal, intrauterine damage, premature or protracted birth, or infections and accidents in infancy and childhood. Infant mortality was high and most children with Down’s Syndrome, cerebral palsy, or other disabilities where there was a weakened resistance to infection would have succumbed early to pulmonary infections, heart defects, and gastroenteritis. At a time when most people lived by agriculture reading and writing were unnecessary, thus having a mild to moderate learning disability would not have been that important. The paragraphs below show how people with a learning disability were regarded and supported through the ages.

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Ancient Greece

Pregnancy over the age of 40 was frowned upon and infanticide and abortion were commonplace if there was a risk of a deformed child. The birth of a child with a learning disability was interpreted by the Greeks as a punishment inflicted on its parents by the gods. Rearing a sick or disabled child was economically burdensome and unprofitable. In some areas, there was a legal requirement to abandon deformed and sickly infants. If the disability was not obvious at birth, but the child was later found to have a learning disability the child would be abandoned.

The Celts

Ancient Celtic laws show there was a well-developed medical service and that each individual tribe was responsible for caring for?the sick, and wounded people and those with learning?disabilities.

The Romans

Some people with learning disabilities would have received asylum in sanctuaries. However, people with learning disabilities had their political rights curtailed and would not have been granted Greek or Roman citizenship.

The Islamic world

People with learning disabilities were treated with respect. There was a belief that their minds were in heaven while their body moved around amongst ordinary mortals. Not all people we would think of as having a learning disability were thought to have any disability, but rather to be special individuals who were favoured by Heaven.

The Middle Ages

People with a disability would have relied on relatives for their care but with poverty, malnutrition, poor hygiene, and a feudal system of life this would have been hard. During the second half of the 13th century, a law was passed. It distinguished between "natural fools”, people with a learning disability?from birth, and those who were "non-compos mentis" who had a mental illness and might recover or have periods of lucidity. The King used to "contract out" care of people with learning disabilities to private individuals.

1713-44?

Common Law drew a distinction between learning disability and mental illness before the first statutory sources, which began with the Vagrancy Acts between 1713 and 1744. The Vagrancy Acts allowed the detention of “Lunaticks or mad persons“, which was the 18th-century definition of mental illness.

1886

The 1886 Idiots Act provided separately for idiots and imbeciles, which was the Victorian definition of learning disability, but the 1890 Lunacy (Consolidation) Act ignored the distinction.

1913

In 1913 the Mental Deficiency Act provided for the segregation of “mental defectives” in ascending order of vulnerability;

1927

The 1927 Mental Deficiency Act emphasised the need for care outside institutions. It also provided a definition of mental deficiency as “a condition of arrested or incomplete development of mind existing before the age of 18 years?whether arising from inherent causes or induced by disease or injury”.?This definition is very close to the definition of learning disability in Section 1 (4) of the Mental Health Act 1983, as amended by the Mental Health Act 2007. The Section states that learning disability means?“a state of arrested or incomplete development of the mind which includes significant impairment of intelligence and social functioning”.

1946

The formation of the National Health Service by the 1946 NHS Act ended the distinction between paying and non-paying patients.

1970

The Chronically Sick & Disabled Persons Act?The Act was a groundbreaking step on the road to equality and forms a basis upon which much subsequent legislation is grounded. The Act placed responsibilities on Local Authorities for the provision of welfare services and housing, extending to the provision of practical assistance for people in their own homes, meals at home or community centres, and the adaptation of houses to meet their needs. The Act gave people with disabilities the right to equal access recreational and educational facilities.

1990

The NHS and Community Care Act 1990 was brought in to promote community care. Local social service departments have overall responsibility for community care and have to publish a regular plan about how this care will be delivered. The responsibility places a duty on authorities to assess people for social care and provide the support they require. A mixed economy of care was promoted with the independent, private, and voluntary sectors being encouraged to provide resources. The closure of the large county institutions began to gather pace.

2000

The Care Standards Act 2000 placed responsibility for the registration and inspection of services with a national regulator and away from local authority departments. Services were inspected against a national standard with sanctions being imposed on those providers who did not meet the necessary criteria.

2012

On 27 March 2012 the Coalition government’s Health and Social Care Bill gained Royal Assent to become the?Health and Social Care Act (2012).?

2012

The government published its final report on the events at Winterbourne View Hospital and has set out a programme of action to transform services so that vulnerable people no longer live inappropriately in hospitals and are cared for in line with best practice.

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The Future

So, what does the future hold for learning disability services in the UK? Some of the future options may include:-

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2015: Most people who lived in long-stay hospital-type settings have been re-housed to small community-based units of 8-10 people with 24hr staff support on site. Most of these people live in a communal setting and are supported to be as independent as possible. (I was partly right with this prediction)

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2020: Local authorities finally complete the process of bringing “out of county” placements back to within the host local authority. There is much opposition to this especially from those directly affected who quite liked living in rural areas as opposed to the inner city. (well I was wrong with that predication)

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2023: With 15 years of pressure on finances initiatives from the early 20th Century such as Supporting People and small residential care settings (3-4 beds) are regarded as not cost-effective and this part of the care sector is in crisis with many such settings closing at an alarming rate putting pressure on emergency placement services. (I was partly right with this prediction)

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2025: New groundbreaking legislation sees the rights of every person born with a disability ?to have care and treatment to meet their needs enshrined from birth. A special court sets aside a sum of money (A Life Care Budget) to meet these needs which responsibility for is placed with trustees in much the same manner as compensation claims for medical negligence etc are dealt with today. The person and their trustees decide how to spend the money throughout the person’s life to purchase care and support to meet their needs. (I can't see this happening)

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2030: Following the success of the “Life Care Budget” scheme for people with a learning disability the scheme is rolled out to everybody. Financial institutions are encouraged to set up schemes where the funds are invested to provide a guaranteed annual sum to meet the person's care needs. (????????)

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2050: The first MP with a learning disability is elected. (maybe, just maybe)

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NB: The above suggestions are based purely on the experience of the author and are designed to promote and provoke debate about this vital subject:

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Conclusion

For those who work in learning disability services and for those interested in moving into this field it would appear that there are interesting times ahead. The services that will survive are those that constantly evolve and adapt in response to the changing demands. In the current climate of reactive policies an element of foresight would be useful in order for services to be ready to respond ahead of the competition. Service providers would be mindful to assess their service against future demands on?a regular basis. This can be done as a separate assessment or as part of the business continuity planning.

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