Sunshine People Training

Susie Constantine

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Meeting the health needs of people with learning disabilities

To have the opportunity to meet a person with a learning disability and gain insight into her life

To develop a better understanding of the needs of a person with a learning disability

“If you listen, you will hear us”

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Aims (cont)

Increased awareness of communication systems that help people with a learning disability

Become familiar with contemporary approaches to working with people with learning disabilities (Valuing People White Paper 2001, Valuing People Now 2009).

What is a Learning Disability?

In the U.K this means:• A significantly reduced

ability to understand new or complex information, to learn new skills (impaired

intelligence) with

• A reduced ability to cope independently(impaired social functioning)

• Which started before adulthood, with a lasting effect on development

• DoH 2001:14)

• There are many different types of learning disability.

• They can be mild, moderate or severe.

• Some people with a mild learning disability do not need a lot of support in their lives.

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>>>See how people feel<<<

Prevalence

• There are approx230,000 – 350,000 people with severe learning disabilities & 580,000 – 1.7 million people with mild learning disabilities.

• 200 babies are born with a learning disability every week

• 9 out of 10 people with a learning disability get bullied

• There are more than 29,000 people with a severe orprofound learning disability who live at home withcarers aged over 70.

Www.Mencap.Org.uk

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Learning disability/difficulty

Any learning or emotional problem that affects, or substantially affects, a person’s ability to learn, get along with others and follow convention.

A significant, lifelong condition that starts before adulthood, affects development and leads to help being required to:

• Understand information• Learn skills• Cope independently

The NHS definition of a Learning disability implies an IQ below 70.

6

Degrees of Learning Disability

Mild: • IQ - range 50-69 (accounts for 89% of

people with a learning disability).• Often not diagnosed until a latter age.• Usually slow in achieving milestones.• May have required special education• Often live & work independently in the

community. May not easily be identifiable.

Moderate Learning Disability

• IQ 35-49 (6% of the learning disability population)

• Noticeable delay in achieving milestones• Will usually have gained basic mobility,

continence, communication and some self help skills.

• May be able to achieve some independence in familiar settings.

• May be able to carry out some semi skilled work with supervision. Usually require some support in managing everyday affairs.

Severe Learning Disability

• IQ 20-34 (accounts for 3.5% of all individuals with a learning disability)

• Very slow in achieving milestones.

• May have additional physical disabilities.

• Help from specialist likely from an early age.

• Emphasis on functional, rather than academic skills.

• Will need help and support with activities of daily living.

Profound Learning Disability

• IQ less than 20 (1.5% of all individuals with a learning disability).

• Development progress very slow. • Likely to have additional physical and sensory

disabilities. • Almost certain to have involvement from specialist

services from birth. • Health may be very frail.• All basic needs are likely to be met by others.• Emphasis on meaningful day time activities. • Health and physical status likely to be a matter of

daily concern.

What is NOT a Learning Disability

• Problems with reading, writing or numeracy only.

• Emotional difficulties.

• Conditions like Attention Deficit Hyperactivity disorder (ADHD)

• Asperger's syndrome and some individuals with Autism.

• However you can have a learning difficulty as well as a learning disability.

Autistic spectrum disorders • Autism is a neurodevelopmental disorder that appears early in life,

generally before the age of three.

• Children with autism may have problems with relating to others, difficulties with communication, and limited imagination. Autistic traits persist into adulthood, but vary in severity.

• A key feature of Asperger syndrome is the lack of intuitive ability to adapt socially and fit in with others. Language may be used in a stilted and stereotyped manner

• Autistic Spectrum Disorders are characterised by difficulties in three main areas known as 'the triad of impairment':

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Asperger’s traits

Possible features:

• Apparent inability to make sense of the world around them

• Lacking imagination/creativity

• Inability to understand other people's feelings, thoughts and needs

• Obsessive interest in one subject/object

• Repetitive behaviour

• Difficulty in accepting changes in routine

• Poor planning and organisational skills

• Speech and language difficulties

• Impairment in use of non-verbal communication (e.g. eye contact, facial expressions, body posture, gestures)

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Downs Syndrome• Hearing loss affects more than 50% of people with Downs

syndrome (DS).• Disorders of the eye, including blepharitis, errors of

refraction, squints, cataracts and poor visual accommodation. Loss of interest in activities may indicate visual impairment.

• Hypothyroidism: affects about 40% of adults with DS, indicating the need for annual thyroid function checks.

• Congenital heart disease is 50 times more common than in the general population.

• Often prone to periods of depression.• Increase in prevalence to epilepsy in the fifth decade of

life.

Living with a Learning Disability

• See Jacks story

• Adult with Autism

• Asperger’s traits

• See Ben story

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Support needs

• Social services will want to find out about all the different areas of the persons life.

• This will include any physical disabilities they have, their health needs, their hobbies and their housing situation.

• They will also be asked about the people that help to care for them, including their carer, family and friends, and any problems they might have in their lives

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Health Challenges

Research has shown that people with learning disabilities have increased physical and psychological health needs but do not access mainstream services (Thompson & Pickering 2001).

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• Life expectancy is lower than the general population, but catching up

• People with learning disabilities are more likely to experience:– mental illness (x3 more likely to have Schizophrenia)– chronic health problems– Epilepsy (22%)– physical & sensory disabilities (40%)– poor oral health– Dementia (x4 greater with Downs Syndrome)– Cancer – Heart Disease (almost 50% with Downs syndrome)

Health Challenges

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• inadequate diagnosis and treatment of stroke, heart disease, chronic respiratory disease, hypothyroidism, osteoporosis & cancer

• Obesity and associated health problems

• There is an above average death rate among younger people with LD

• There are many inconsistencies in the provision of Primary care and hospital provision

Health Challenges

Health Challenges

• When people with a LD approached health care providers for assessment or treatment they found it difficult to access the help they needed.

• Health outcomes fall short when compared with outcomes of non-disabled people

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• Over-dependence on the use of psychotropic drugs for the management of challenging behaviour

• Doctors & care staff fail to recognise potential health complications of many of the conditions that cause LD

• Few people with LD access health screening services with uptake for breast & cervical screening being especially poor

Health Challenges

Dysphagia• Feeding, swallowing and nutritional problems have a

high prevalence among people with a learning disabilities.

• This can have serious repercussions including poor nutritional status, dehydration, aspiration and asphyxiation. Which can be or lead to life threatening problems.

• People with cerebral palsy and those with severe intellectual and physical disabilities have a high incidence of Dysphagia and patients with spastic quadriparesis are at particular risk of aspiration.

• There is limited research into people with learning disabilities who have Dysphagia, there is however evidence that successful management decreases risk. (National Patient Safety Agency 2004)

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Reasonable adjustments

‘Getting it right’ campaign

G.P’s and hospitals

People with learning disabilities may find it difficult accessing health and social care services.

People may not understand the information about health services.

See the handout for further info.

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Solutions

Mencap (2004) in their report ‘Treat me Right’ are calling for the following improvements:

• More training for health staff

• Making visits to the doctors or hospital easier

• Longer visit times in general

• Make information more accessible

• Understanding more needs

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The carer looks at you and speaks slowly

Use Makaton signs

Call us by our names

Activities and outings.

Time and patience.

Solutions

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Ensure that people have annual checks with GP

Access to health services

Make sure a person’s records shows they have a learning disability

Reduce health inequalities/poor access

Solutions

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• challenge discrimination & exclusive practices

• Introduce Health Facilitators – sometimes a CLDN or an experienced RNLD.

• All people with an LD to be registered with a GP

• All people to have a Health Action Plan

Solutions

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The Social model of Disability

The social model of disability says that disability is caused by the way society is organised, rather than by a person's impairment or difference. It looks at ways of removing barriers that restrict life choices for disabled people.

Watch here

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Examples

A wheelchair user wants to get into a building with a step at the entrance. Under a social model solution, a ramp would be added to the entrance so that the wheelchair user is free to go into the building immediately. Using the medical model, there are very few solutions to help wheelchair users to climb stairs, which excludes them from many essential and leisure activities.

A teenager with a learning disability wants to live independently in their own home but is unsure how to pay the rent. Under the social model, the person would be supported so that they can pay rent and live in their own home. Under a medical model, the young person might be expected to live in a communal home.

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Early detection

Signs & Symptoms of Learning Disability.Lack of enthusiasm to read or write

Trouble to memorise things

Working slowly

Inability to follow directions

Trouble staying focused

Difficulty understanding abstract ideas

Lack of attention to detail/ too much.

Poor social skills or disruptiveness.

What is important to you?

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Alternative & augmentative communication systems

Everybody communicates -Using speech is not the only wayThere are Alternative and Augmentative forms of communicationPeople with no speech communicate through:

Sign language

Body language Eye contact

Touch – if appropriate Tone of voice

Intensive interaction

Other systems-

• Sign language – ‘signalong’, BSL,

• Blissymbols, PECS, Objects of Reference, Facilitated communication,

• Total communication –considering the internal & external world of the client and using a range of approaches

• Use of computer-assisted technology

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Communication Passports

• Personal Communication Passports are a practical and person-centred way of supporting people who cannot easily speak for themselves.

Passports aim to:– present the person positively as an individual, not as a set of

'problems' or disabilities.

– provide a place for the person's own views and preferences to be recorded and drawn to the attention of others.

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.

• Reflect a 'flavour' of the person's unique character

• Describe the person's most effective means of communication and how others can best communicate with and support the person.

• Draw together information from past and present, and from different contexts, to help staff and conversation partners understand the person, and have successful interactions

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Communication Passports

Samples of communication passports

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Valuing People (2001)

What is the Valuing People White Paper about?

The 4 themes of ‘Valuing People’:RIGHTS

INDEPENDENCE

CHOICE

INCLUSION

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RIGHTS

‘People with a Learning Disability have the right to a decent education, to grow up to vote, to marry & to have a family & to express their opinions with help & support to do so where necessary’ (DH 2001:23)

Legal & civil rightsThe Disability & Discrimination Act (2005)The Human Rights Act ( 1998)Equalities Act (2010)

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Rights we have

Right to vote

Right to paid work

Right to have children, get married

Right to say no

Right to be assertive

The less people can speak up for themselves the more their rights are refused

We have the same rights as everyone else

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INDEPENDENCE

Need to believe that people with learning disabilities can move on & be independent

Many people are actively denied opportunities to be independent

The starting premise should be one of independence rather than dependence

Support is necessary. In this context independence does not mean relinquishing responsibility or people doing everything unaided

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CHOICEPeople with learning disabilities can speak up for themselves. They want a say in making important decisions & choices in every aspect of their lives

They want opportunities to self advocate & make a contribution to their local community

Making choices means working through the consequences of decision-making & allowing people to learn from and make mistakes

With the right support people can make decisions & express their preferences about their day-to-day lives

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Choices I want

I want to choose my ownclothes

I want to choose where I go

I want to choose where I live and who I live with

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INCLUSION

Allowing people with learning disabilities to do ordinary thingsInclusive practice needs to develop in such a way that people feel part of & involved in their communityTheir presence & visibility needs to be highlighted, accepted & valued at all levels for inclusion to be a realityOffer some examples -

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Is Valuing People making a difference to peoples’ lives – NO!

Many people still do not have their rights acknowledged, especially those from ethnic minorities & those with high support needs

Family carers are still not getting the support or services they need

There is not enough money being put into services. Some of the money goes elsewhere

Health services need to change so that they meet the needs of ALL people with learning disabilities and their families

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Many people are still poor and therefore disadvantaged – they are socially excluded, have poor health & do not have a jobCrimes against people with learning disabilities are not taken as seriously as crimes against other peopleStill not enough staff working in learning disability servicesInformation needs to be more accessible and understandable. There needs to be more training in the different ways that people communicate

Is Valuing People making a difference to peoples’ lives – NO!

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Is Valuing People making a difference to peoples’ lives –YES!

More people are making choices, taking control & getting help to plan

More people are working in Person Centred ways

People with learning disabilities & their families are being heard at local, regional, national level & Government levelInformation & meetings are becoming more accessible

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Research is being undertaken with people with learning disabilities into how Valuing People is making a difference

Money has been given to advocacy groups & the Learning Disability helpline is helping many people

A ‘Valuing people’ support team is making sure that the principles of the White paper are being implemented

The National Care Standards Commission have set up a Learning Disability group that includes people with learning disabilities

Is Valuing People making a difference to peoples’ lives –YES!

Valuing People Now (2009)

• States what the priorities are for the next 3 years.

• It is about adults with learning disability including transition – when children become adults.

• It says what should be done so that Valuing People happens for everyone.

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Valuing People Now (2009)

The priorities are:• People having more choice & control over their lives &

services – called ‘personalisation.’

• What people do in the days and evenings – including getting a paid job & easier access to college courses.

• People being healthy and getting a good service from the NHS.

• People having more choices about where they live.

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Other important bits

• Advocacy & rights

• Partnership with families

• Including everyone –people with LD, from ethnic minorities, people with LD who break the law & people with additional mental health needs

• People as local citizens –combating crime, improving transport & increasing opportunities for personal relationships

• The staff that support people – including people working in mainstream services (that also means staff working in hospitals & other health care settings)

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Legislation

• Human rights act 1998

• Equality Act 2010

• Adults with incapacity (Scotland) Act 2000 Guardianship and Intervention Orders.

• Care standards Act 2014

• Mental Capacity Act 2005

• The Mental Health Act 1968

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And Finally

Remember

Nothing about us without us

Useful Websites

• www.paradigm-uk.org

• www.Valuingpeople.gov.uk

• www.nas.org.uk - National Autistic Society

• www.fragilex.org - Fragile X website

• www.ndss.org - National Down Syndrome Society

• www.learningdisabilities.org.uk/html/content/pcp_communication.pdf -a useful website addressing communication passports

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