Working with Individuals with Down Syndrome

Gráinne Murphy National Director of Policy, Ethics and Independence Down Syndrome Ireland

Workshop Outline

• • • • • • • • • • • • Introduction to DSI

Introduction to Down syndrome Living with Down syndrome

Leadership Induction & Training Job Descriptions

Communication Guidelines

Team Work Legislation

Behaviour

Reasonable Adjustments Key Guidelines

What is Down Syndrome?

The History

• • • • • Dr. John Langdon Down London in 1866 Similar characteristics in his patients (unrelated) Differed from any other form of ‘mental handicap’ (terminology of the time) ‘Mongols’

The Science

• In 1959 a French Professor named Dr Jerome Lejeune discovered that Down syndrome is a genetic disorder caused by the presence of an extra chromosome.

What is a Syndrome?

• A syndrome is a collection of signs and symptoms usually found in a combination.

Chromosomes

• • • • Chromosomes are minute particles within the cells of our bodies.

In simple terms, they are the building blocks which give us our individual characteristics. They determine the colour of our hair and our eyes and other physical features Chromosomes are usually grouped together in 23 pairs, i.e. there are 46 in all. Half of these chromosomes come from the father and half from the mother.

Most babies with Down syndrome have an extra number 21 chromosome making 47 chromosomes in all.

A chromosome is a package of genetic material found in the centre (nucleus) of every cell. Human cells normally contain 23 pairs of chromosomes, half of which are inherited from each parent.

Down Syndrome

• Down syndrome is a common congenital chromosomal anomaly. • It is found worldwide. • Down syndrome occurs when there is one extra copy of chromosome 21 in the body.

• Down syndrome is present at birth • The extra chromosome 21 material may affect the physical development and learning abilities of people with Down syndrome

• • • • Down syndrome is a lifelong condition People with Down syndrome may share certain physical characteristics. Each child also inherits family traits and consequently can be more like their family than anybody else. Like any other child, children with Down syndrome vary in their abilities and achievements.

Types of Down Syndrome

Trisomy 21

About 95% of cases of Down syndrome fall into this group. Theparents usually have the normal number of chromosomes, but the baby has three, rather than the usual pair of number 21 chromosomes. This can result from an error in the division of the egg cell or the sperm cell. It is an accidental occurrence.

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Translocation

This simply means moved to another location. Translocation is observed in 4% of babies with Down syndrome and can take several forms. With translocation, the baby has a normal number of chromosomes but extra chromosomal material. As well as two normal 21 chromosomes, the baby has an extra portion of 21 chromosome attached to a normal chromosome.

Mosaic

One per cent of people with Down syndrome have a mosaic pattern. They have a mixture of cells; some have a normal number of chromosomes, while some have 47 chromosomes due to the presence of an additional number 21. The cell mixture arises after fertilisation, usually when some of the cells in an early developing baby with Down syndrome revert to normal by losing the extra number 21 chromosome. Being a mixture of normal and Down syndrome cells, such a baby may show only partial features of the condition.

Incidence & Prevalence

• • • • • • 1 in 546 live births in Ireland Down syndrome affects people of all races and economic levels.

Women aged 35 and older have an increased risk of having a child with Down syndrome. A 35 year old woman has a 1 in 400 chance 1 in 110 by the age of 40. At age 45 the incidence becomes approximately 1 in 35.

Characteristics

Face: The face tends to be round and flat Head: The back of the head is slightly flattened Eyes: The eyes of nearly all children and adults with Down syndrome slant slightly upwards. In addition, there is often a small fold of skin that runs vertically between the inner corner of the eye and the bridge of the nose. This is known as the epicanthic fold or the epicanthus.

Hair: The hair is usually soft and straight Neck: The neck in newborn babies may have excess skin.

Older children and adults tend to have short broad necks.

Mouth: The mouth cavity is slightly smaller than average and the tongue slightly larger. This causes the person with Down syndrome to sometimes protrude the tongue Hands: The hands tend to be broader and shorter, the little finger can sometimes curve inwards. The palm of the hand may have only one crease and if it has two both may extend right across the hand.

Feet: The feet are usually stubby and there is a crease between the first and second toes known as ‘sandal gap’.

Tone: Low muscle tone or ‘hypotonia’ is common among babies and very young children with Down syndrome but it improves spontaneously as the child gets older.

Body size:

The average height and weight of a child or adult with Down syndrome is less than that of the rest of the population.

Weight gain can be a problem but with a healthy diet and plenty of exercise this can be avoided. Height is at the bottom of normal range and is approximately 145 to 168cm in males and 132 to 155cm in females.

Health

Children with Down syndrome have increased risk of certain health issues: – – Congenital heart defects Susceptibility to infection – – Hearing, vision, thyroid and respiratory problems Obstructive digestive and neurological problems and leukemia The life expectancy of persons with Down syndrome is increasing, thus, the importance of life-long living and learning needs to be supported.

Person First Language

• • • DSI promote the use of person first language at all times.

When referring to an individual, always describe them as a person with Down syndrome. The correct terminology is capital “D” for Down and small “s” for syndrome e.g. Joe Bloggs is a person with Down syndrome.

References to “ a Downs” / “Down syndrome person” are no longer in use.

The Eternal Child

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Role Play

Post Office Clothes Shop Grocery Store – Laser card

Awareness-Raising

What is needed?

• LEADERSHIP “..do not follow where the path may lead. Go instead where there is no path and leave a trail” • (George Bernard Shaw) Attitude Shift – Sometimes you have to treat a person differently in order to treat them fairly!

Leadership

• • Leadership is a process that is ultimately concerned with fostering change.

Management is indicative of preservation and maintenance.

Job Descriptions

• • • Provide in an easy-to-read format Distinguish between desirable and essential The what vs. how?

Induction & Training

• • • • • • Accessibility of induction programme Break down duties into smaller, manageable tasks.

Repetition Mentoring…… Transference Clarify the ‘unwritten rules’?

Communication

• • • • • • • • • Simple & to the point!

Avoid jargon & sarcasm Develop a flexible approach to communication Total Communication Approach Face to face Visual supports Demonstration Be patient – processing time Encourage active listening

Easy-to-Read Guidelines

• • • • • • A way of making information more accessible to people with learning disabilities Purpose: to tell people with learning disabilities what they need to know Not purely a translation Concentrate on the main points Informed decisions Easy read documents may act as a tool for supporters to help the person understand the key issues.

Easy-to-Read Guidelines

• • • • • • • Useful for other groups Documents are not always the preferred format Commissioning easy-read Familiarise self with easy-read documents Guidelines are available Involve target audience Age appropriateness

Practical Advice

1. Explaining concepts Pictures and text Longer documents Important dates highlighted at beginning Break up text with: – Bullet points* – Boxed text – Emboldened text

2. Pictures

• • • • • • Support the text Positioned to the left of the text Photographs / symbols / other images Use a consistent style throughout the document Colour is preferable Resolution

3. Words and Content

• • • • • • • Avoid Jargon and complicated words Define difficult words Box out definitions Consider a glossary* Be careful with acronyms and abbreviations Use a bigger font (14 +) with a bigger font for headings Sans serif or Arial font

4.Grammar, Punctuation & Numbers

• • • • • • • • • • Traditional rules of grammar need not apply Use language that sounds natural Use full stops Avoid too much punctuation or colons Never use hyphen at end of line Repetition is better than variety Say ‘half’ ‘ quarter’ ‘1 in 5’ rather than using percentages Use whole numbers if possible Dates: 11 October 2013 Avoid 24 hour clock. Use am / pm or morning / evening

5. Overall Layout

• • Avoid questions Start new chapters or topics on an new page

6. Length

• • • As short as possible (try to be less than 20 pages) Include contents list in longer documents Short sentences.

7. Colour Schemes

• • • Black text against a white or cream background or white against dark.

Certain visual impairments may require a more specific format Coloured borders could be used (avoid traffic light colours)

8. Use of Photos

• • • Photos work really well If there is a foreword from CEO or other person, include a photo If preparing an agenda for a meeting, include photos of speakeres

9. Checking with Audience

• • • Make drafts Share good practice Ask people with learning disabilities and relevant associations to proof read.

Reference: Making Written Infomration Easier to Understand for People with Learning Disabilites. Department of Health, UK (2010) Cross Reference: Valuing People Now

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Arrangements to Retain Employees

Establish a work pattern but it doesn’t need to be too rigid!!

Provide clear expectations Outline contribution to overall business objective Praise Constructive criticism helps define boundaries and expectations.

Appreciate that a person with DS may require additional management support.

Allow additional time

Legislation

• • • What does the law say?

Employment Equality Acts 1998 – 2008 – 1.7 Disability – Reasonable Accommodation – 1.8 Appropriate Measures – 1.9 Disproportionate Burden – 1.10 Positive Action It makes business sense – Equal Status Acts 2000 – 2011 (pg 15)

Health & Safety

• As long as training is appropriate and communicated in a suitable way people with DS should pose no greater risk in terms of safety than any other employee.

Teamwork

• • • • Ensure colleagues are aware of any adjustments needed to maximise interaction Workplace jargon / abbreviations Ensure employees are aware of your disability policy Disability awareness training – direct business benefits – encouraging participation and loyalty across the workforce.

Additional Supports

• • Developing supportive partnerships – Advocacy group – Service Provider – Families Supported Employment

Performance Management

• • Holistic approach – Production – Promote diversity – Develop supervisor learning – Improve task analysis – Increase team morale These contributions can far outweigh the more ‘tangible’, traditional outputs.

Purpose of Behaviour

• All behaviour is a form of communication • Figuring out what that behaviour is communicating may require the skills of a detective • Changing any behaviour will only happen in relationship

Behaviour is influenced by

• • • • • • • Medical issues Temperament Learning Style Communication ability Memory Changes in home environment Stress/anxiety

Medical

• • • • • • Hearing impairment – 80% of children with DS have hearing impairment during childhood Visual impairment – Often these go undetected Poor immune system – frequent coughs and colds Heart problems – 50% have heart problems majority of which are correctable in early years Sensory issues Sleep apnoea

Memory

• The person with Down syndrome takes longer to learn everything so - Repeat, repeat, repeat • Consistency pays off to encourage good behaviour • Specifically praise the behaviour you want to encourage • Short term memory is a problem for people with Down syndrome

Who is responsible

• Legally a person over 18yrs is responsible for him/herself • A vulnerable adult needs reasonable accommodation in the workplace • What is this and how do we ensure the person is accommodated in a reasonable manner?

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What causes difficulty in the workplace?

Understanding of rules and regulations • Work practice needs to be explained using simple sentences • Schedules – visual • Change – need advance warning • Jokes how to tell the difference joke/reality 29/05/2013

Work Practice

• • • • • Visual method of teaching people these rules and regulations Information needs to be in an easy-to-read and understand format Understanding of time is a difficulty Is the person aware of the different structures in the workplace – what is the hierarchy system?

Where does a union representative fit in to this?

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Parents

• • • • • Generally speaking parents know their son/daughter better than anybody else A good system of communication may prevent problems arising Prevention is better than cure Parents are generally available to assist the workplace to make this placement as successful as possible Parents may also need to know who is who in the workplace so that they can inform the relevant person of any difficulty 29/05/2013

Case Study

• • • • • • • • Tom 2 afternoons per week Supermarket Supported employment for 18 months 8 years Bagging for one hour p/w at till Stacking shelves for three hours p/w Inappropriate with customers of late…acting very childish

Case Study

• • • • • • • Jenny Retail 6 months Fancies colleague Refers to him as her boyfriend Colleague understanding but now embarrassed in front of customers Reported matter to management

Reasonable Adjustments

• • • • • Equipment Flexibility Work environment Moving someone to a more suitable or challenging role when a vacancy arises Changing Attitudes

What is Reasonable?

• • Varies for companies and individuals Consider the following factors: – Cost – – Practicality Effectiveness – Disruption – Effect on others – Health & Safety – – Length of Service Valuable skills, contacts or training – External sources of help

Cost

• • • • • It may be free!

Resources Whole organisation approach…encourages diversity Will it benefit other employees and/or customers e.g. clear signage, better lighting etc.

Financial support from external agencies.

Practicality

• • • • Lower level of output vs. lower quality?

The how vs. the what….

Core components Transferring a person to another department or role.

Effectiveness

• • • An adjustment is only reasonable if it is effective in removing the disadvantage the person is facing The person may not be an expert on their own disability Least difficult vs. most effective

• Case study

Disruption

Effect on Others

• • • • • • • Resentment Confidentiality Culture created by management Inclusive and accommodating Equality?

In order to treat some people fairly you may need to treat them differently Positive action: Disability Awareness Training

Health and Safety

• • • An adjustment will never be reasonable if it poses an unacceptable risk to the health and safety of person with DS or anyone else Assumptions can lead to unfair decisions Risk assessment

Length of Service and Valuable Skills

• • Retention of valuable knowledge and experience Culture / Morale

External Sources of Help

• You are not alone in deciding what is reasonable!

Key Guidelines

• • • • • • Talk to employee Ascertain the difficulties Keep the employee informed Consent for sharing details with colleagues Confidentiality I key if you are going to maintain trust Chain of command…”everyone else cannot be my boss!!!”