Learning Disability Week 15th-19th June 2015
“Hear my voice”
Introduction by Debbie Borastero – Chairwoman
Learning Disability Week is an event that is celebrated worldwide and allows organisations such as the Gibraltar Disability Society to promote awareness. Learning Disabilities cover such a wide spectrum from mild to very severe and as such it is sometimes difficult for others to comprehend. Gibraltar is a small and very caring community but, along with other communities, there are misunderstandings regarding people with learning disabilities particularly those with more severe and complex needs. People with mild learning disabilities can, with very little support, live full and productive lives. It is sometimes assumed however, provided those with more complex needs receive the care they need, they do not have the hopes, dreams and aspirations that the rest of the community have. This is a huge misconception. Persons with learning disabilities, regardless of how severe, want to be an integral part of any community. Many wish to live independently from their families – some with little support and others with 24 hour support. Many also wish to gain employment be it a few hours a week or full time. Again, with the right amount of support this can be entirely possible. Everyone has the right to make choices in their lives and those with learning disabilities are no different. Gibraltar still has a long way to go with regard to allowing choices for persons with learning disabilities. We have made great strides in regard to learning disabilities but what is required is the introduction of Legislation to promote the rights of all disabled persons. With that as a basis and a system that allows learning disabled persons to make choices in all walks of life Gibraltar will be heading in the right direction. This year’s learning disability week is aptly named “Hear my voice” so all we have to do is listen.
1. What is a Learning Disability?
Article by Maurice Valarino
Learning Disability used to be called ‘Mental Handicap’
Intellectual Difficulties (ID) is not synonymous with Learning Disability,
A learning disability is a reduced intellectual ability which can lead to difficulties in taking part in everyday activities – for example household tasks, language, mobility, learning, socialising or managing money – which will affect 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. For example, someone with a mild learning disability may only need support with things like getting a job. However, someone with a severe or profound learning disability may need full-time care and support with every aspect of their life – they may also have physical disabilities. People with certain specific conditions can have a learning disability too. For example, people with Down’s syndrome and some people with autism have a learning disability.
Learning disability facts
What is not Learning Disability ?
Learning disability is often confused with dyslexia, which is a learning difficulty. Learning disability is also confused with mental health problems. We describe dyslexia 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. It’s important to remember that with the right support, lots of people with a learning disability can with the proper support lead autonomous lives.
2. Home and Community Support for Persons with Learning Disability. Article by Maurice Valarino
Persons with learning disabilities live in the community, either with family members, in supervised-group homes such as the Dr Giraldi Home or in their own Government flat either alone or with flatmates. Those living with families are supported by their family members. Those living in group homes or in their own flat receive a varied range of support from one-to-one assistance from a care worker or social worker with identified aspects of daily living (such as budgeting shopping or paying bills), to full 24-hour support (including assistance with household tasks, such as cooking and cleaning and personal care such as showering, dressing and the administration of medication where necessary). The amount of support will depend on the individuals level of ability. The need for full 24-hour support is usually associated with difficulties recognizing safety issues or for persons who are unable to manage their conditions without assistance.
Supports of this type include assistance to access community services (such as leisure activities), learning appropriate behaviour or recognition of community norms, or with relationships and expanding circles of friends. Most programmes offering at-home and community support are designed with the goal of increasing the individual’s independence, although it is recognized that people with more severe disabilities may never be able to achieve full independence in some areas of daily life.
Residential accommodation
Some people with learning disabilities live in residential accommodation (eg Dr Giraldi Home) with others with similar assessed needs. Homes such as this are staffed around the clock, and usually house between 2 and 7 residents per flat. This type of accommodation is gradually decreasing in many European countries as supported residential accommodation in the community is now favoured. Supported independent living can offer an increased choice and self-determination for individuals and their families.
3. Living Longer with Learning Disabilities. Article abridged by M Valarino from BILD factsheet by Cally Ward
Learning Disabilities are often diagnosed when a child fails to reach established mile stones in its development. Learning disabilities are a lifelong condition and as such affects children as well as young, middle age, and elderly adults. Thanks to the development in medical science the survival rate for babies born with disabilities is increasing. Life expectancy generally continues to increase and disabled persons, being no different, are living longer. Life expectancy of people with learning disabilities has increased over the course of the last 70 years. Better social conditions and better access to medical care have meant that more people are surviving beyond childhood and adulthood into older age. The number of children with learning disability in Gibraltar has increased in the last four decades and people with learning disabilities aged over 60, in England, is predicted to increase by over a third between 2001 and 2021. Recent evidence suggests that older people are one of the fastest growing groups of the learning disabled population. The most recent predictions suggest that by 2030 the number of adults aged over 70 using services for people with learning disabilities (which does not include Dementia or Alzheimer) will more than double.
Older people with learning disabilities are a diverse group therefore the support an individual will need to make a successful transition into later life must be person centred and tailored around their individual needs. This is because a person’s capabilities vary greatly as do their needs for support and community based services. Each person will have had a different life experience and a different set of hopes and fears for the future. Today, many older people with learning disabilities who are living in residential care or supported living will have spent part of their life in institutional settings. People in this group are often seen as a relatively able and healthy group, but they have been denied many opportunities over the course of their lives. The profile of older people with learning disabilities in the future will be even more diverse than it is today. This is because the population profile of people with learning disabilities is changing. Many more people with complex health needs are living longer and will present a different set of challenges for our care and medical services as they age.
Children and most adults with a learning disability live with their families, the majority with their parents. Some parents are now in their 70 and even late 80s and continue to care for the adult offspring some of whom are of pensionable age themselves! Given the increase in Gibraltar’s ageing population the number of people with a learning disability living with a parent over the age of 70 can be expected to rise. Some family carers are caring alone as they have been widowed. Older family carers often worry that their son or daughter is living a prematurely ‘old’ lifestyle because they share the social networks of their parents. As family carers grow older, and sometimes frailer, there is the risk that their social circle shrinks exposing them to the risk of growing isolation. The need to plan for the future remains a priority for all families growing older together. Many people with a learning disability and their family carers face increasing challenges as they age and many continually worry about the future when the family carer is unable to provide care or passes away. This can be a very vulnerable group if they don’t get the support they need.
4. Learning Disabilities.
Article adapted from BILD Factsheet by Ken Holland
Learning Disability is a general term that refers to individuals who find it harder or impossible to learn, understand and communicate. The World Health Organisation defines learning disability as ‘a state of arrest or incomplete development of the mind’.
In the education service the term ‘learning difficulty’ is also used to include people who have ‘specific learning difficulties’ (e.g., dyslexia), but who do not have a significant general impairment in intelligence. It has been convenient for health, social care and education professionals to attach the label of learning disabilities to children, young people and adults for the purposes of planning services, expenditure allocation and data collection. wever, individuals who have this label can and should be described in many other ways including, friend, neighbour, relative, colleague, partner, employee and even parent. A label describes one aspect of a person, but does not capture the whole person. Labels and terminology have changed over the last 200 years, from ‘idiots’ in the 1880’s, through to ‘mad’, ‘feeble minded’ and ‘imbecile’ in the early 1900’s. It wasn’t until 1948, with the formation of the NHS in UK that the term ‘mental handicap’ was first used and then only in 1959 in the Mental Health Act when a distinction was made between ‘mental handicap’ and ‘mental health’. The more familiar terminology of learning disabilities started to be used in the early 1990’s following the publication of the NHS and Community Care Act. The term ‘Learning Disability’ is widely used in UK and Gibraltar. In other English speaking jurisdictions such as the USA or Australia the preferred terminology is ‘Intellectual disability’.
Internationally three criteria are regarded as requirements to be met before a learning disability can be identified or diagnosed. These are: intellectual impairment (IQ), social or adaptive dysfunction combined with IQ and early onset. For the majority of individuals, the presence of a learning disability is from birth or during the early development period of life. Acquired learning disabilities can also be the result of a brain injury in later life. Causes include genetic factors, infections before birth, brain injury or damage at birth, brain infections or brain damage after birth. However, for many who are diagnosed with having a general learning disability, the cause remains unknown.
There are four critical areas where a learning disability could become present, these are:
Chromosomal conditions – Chromosomes make up the genetic blueprint of every individual and each of us usually has 46 chromosomes. Sometimes there can be an abnormality in an individual’s chromosomes, and this may lead, in some cases, to learning disability.
Maternal factors – Some infections caught by the mother may be passed on to the unborn child, and may lead to learning disability. Other maternal factors include diet deficiencies and excessive consumption of alcohol
Metabolic disorders – A person’s metabolism controls the chemical changes which occur in the body. A common metabolic disorder is phenylketonuria, which is the lack of an enzyme which breaks down certain amino acids. This can be detected shortly after birth and controlled through diet. If it goes undetected then severe learning disabilities can result.
A learning disability may result if the baby’s oxygen supply is interrupted for a significant length of time or if the baby is born significantly premature and becomes ill shortly after birth. Some childhood infections can affect the brain, causing learning disability; the most common of these are encephalitis and meningitis. Social and environmental factors, such as poor housing conditions, poor diet and health care, malnutrition, lack of stimulation and all forms of child abuse may also lead to learning disability; as can a severe head injury, for example from a road accident. A child may also be born with a learning disability if certain genes are passed on by a parent. This is called inherited learning disability. The two most common causes of inherited learning disability are Fragile X syndrome and Down’s syndrome. Fragile X syndrome and Down’s syndrome are not learning disabilities, but people who have either condition are likely to have a learning disability too.
Contemporary European policy has shifted the emphasis away from ‘institutional’ living – (residential, large supported living homes), towards a more inclusive approach, where individuals are living more independently in the community, being supported more flexibly, being encouraged to develop their skills and abilities and using individual budgets to facilitate this. These are important steps towards inclusion, choice, control and independence and recognise that with the right person centred approaches, people with learning disabilities can be supported to use and develop their social functioning skills
In the last decade Gibraltar has seen a significant shift in the way people with learning disabilities should and can lead their lives, that embraces inclusion, being visible and part of the community, integrating into the wider mainstream provision, achieving health improvements and developing life skills for paid work, leisure and education. Whilst this shift is supported by the vast majority of self advocates, family carers and professionals, the reality is that change has been slow and many people are still ‘cared for’ rather than ‘supported with’. The result being that individuals are still excluded and disadvantaged and they also continue to face difficulties in every aspect of their lives.
In the UK the promotion of person centred planning has also made a significant contribution to the way people are supported, primarily as a result of individual’s themselves saying what they want, how they want it and when they want it. Recent UK Government policy has promoted the use of individual budgets (sometimes referred to as personalisation, personal budgets, personalised support or self directed support). Individual budgets are part of the wider reform and changes to adult social care and were included in a working document known as ‘Putting People First’, published by the Dept of Health UK in 2007, which outlined the UK government’s vision of how personalisation of social care services was to be introduced to allow people to have more choice and control over their own lives.
An individual budget is money that is given to a person (or through a broker arrangement) to buy their own support packages and other things they need to meet their personal outgoings they have identified in their support plans and/or person centred plans. People who have an individual budget have more control over their lives, decide on how the money is spent and when support is required, giving them more opportunities for choice. Before individuals get an individual budget, their needs and wishes are assessed against a Resource Allocation System (RAS) which will determine what level of funding they will be entitled to.
5. Employment prospects for young people with learning disabilities Article by Nicole Byrne Gibraltar Disability Society
Young people with learning disabilities can often be discouraged from seeking employment. When it comes to setting expectations for a child with learning disabilities, things can start to go wrong the moment they are born. From time to time and often from an early age, most children are asked: “So what do you want to be when you grow up?” Some have a ready answer, others just shrug their shoulders, but at least they start to get the message that there is an expectation they are going to “be” something. For most children with learning disabilities, that question is often not asked. Some drift from school (special or mainstream) into further education where they often repeat the same courses year after year, others end up attending Adult Day Services with no definitive goals or aspirations. Some may get to undertake some work experience but most won’t see any wages for it or get given a chance to discover their vocation, and yes people with disabilities do have vocations too! Due to their lack of self-fulfilment many end up lacking the drive or motivation to leave their homes. It is for these reasons that the Gibraltar Disability Society believes people with disabilities deserve the same employment opportunities as any other individual.
What is supported employment?
Supported employment was developed in the United States in the 1970s as part of both vocational rehabilitation services and the advocacy for long term services and supports for individuals with significant disabilities in competitive job placements in integrated settings (e.g., businesses, offices, manufacturing facilities). Supported employment evolved as a way to assist individuals with the least and most significant disabilities with employment in their communities…A Real Job for Real Pay. For over 30 years supported employment has demonstrated that individuals with disabilities can work, yet today many individuals remain segregated in day programs or without employment opportunities.
Best practices dictate that an individualized support approach to supported employment, funded as a professional vocational rehabilitation service is used to assist individuals with gaining and maintaining employment or as it is known now Job Retention. These practices may involve a supported employment service provider who through vocational profiling of the person requiring the job, will intern match and arrange for the Supports needed or making reasonable adjustments which could include: modifying a job, adding accommodations or assistive technology, enhancing on the job site, training among other approaches, such as identifying network relationships (e.g., family business, local job sites and owners) and training parents regarding better futures. What is needed will vary from one person and one employer to the next and, in many cases, the professional assistance of Occupational and Speech Therapists may be required.
Anyone can become employed if they are motivated, given the right job and the right support. Supported employment is a flexible and continuous process, designed to make that happen. The British Association of Supported Employment (BASE) members regard employers as key customers of their services and there is a strong business case for employing a diverse workforce as many companies have discovered. The model is equally applicable to supporting job retention.
The Supported Employment Model
Customer engagement: Job coaches should approach schools, adult day services or ETB to encourage jobseekers to explore employment as a way of improving their quality of life.
Vocational Profiling: The first element of a successful job match is the vocational profiling or “getting to know you” process. Identify the aspirations, learning needs, individual skills, past experiences and job interests of the jobseeker. Working with families and support workers, information is gathered that is needed to develop a good job match and to identify the ideal job for that person based on their skills and preferences. Many people have never worked or not worked for many years and may need support to make informed choices about career opportunities.
Employer engagement: Many employers are anxious about employing someone with a significant disability but there’s nothing special about it. Once they’ve tried it out they often become very committed to helping people overcome traditional recruitment and selection barriers. Traditional recruitment techniques can be overly rigid and formal. An informal ‘Get to Know You’ interview may be best. The Job Coach and family member can be present to allow the young person to feel more relaxed and at ease. “Working Interviews” is another form that allows individuals to demonstrate their skills in the workplace and allow the employer to gather the sort of evidence that a formal interview seeks to capture.
Job Matching: A job analysis is usually undertaken to checks out any assumptions made in the job description. Although it is common practice for employers to set out the basics of a job for new recruits, it is not common for a detailed analysis of the job and environment to be available. All aspects of the job and the work place should be looked at including health and safety, to make sure we have the right job for the right candidate. Discussion as to whether extra assistance or alterations to working practice or the environment are needed. This helps to produce a better job match. The job analysis might point towards ways of carving together parts of job descriptions that suit the workers’ talents, or creating new job descriptions that suit the worker and are cost effective for the employer. Most adjustments are reasonable and inexpensive.
In-work Support: It is important to offer appropriate levels of support and encourage the involvement of the employer and co-workers. Job Coaches can support the person’s induction and provide on-site training support where needed. They may also offer out of work support if needed. Individual development plans are usually used to plan and monitor the employee’s learning. Targets should include encouraging the social inclusion of the worker within the workplace. Identifying the most ‘natural’ ways in which support can be offered to people with disabilities in employment, working in partnership with employers and all concerned. More intensive and personalised approaches such as Training in Systematic Instruction are available if needed. Not all workers will reach the productivity, quality and social standards set by the employer. When all learning strategies have been exhausted and the data shows no further improvement, discussions will be needed to seek a more suitable job match with the employer or to find a different job with a different employer.
Career development: Not many people stay in the same job for the whole of their working lives and people with disabilities are no different in having to adapt to changing labour markets and wanting to improve their working lives. Supported employment should encourage the career development of individuals by promoting training opportunities and seeking options for increased responsibility.
Supported Internship: Supported Internship Programs focus on serving young adults aged 16 to 24 with a variety of developmental and/or learning difficulties and/or disabilities who want to move into employment and need extra support to do so. Put simply, they are a way of using education funding to secure jobs. In the UK internships begun around 2009 when a number of sites were funded by the Labour Government. Supported Internships like the Project SEARCH model are work-based learning placements within mainstream employment settings. Program participants or Interns experience total immersion in the workplace. Students are on site at the business each school day for a minimum of six hours for an entire academic year. Generally, they involve three rotations i.e. the learner would try out 3 to 4 work roles within the company. The Education Department provides a Teacher who organizes group learning around the placement, often at the start and end of the day, but sometimes through day release. The Supported Employment Agency provides the job coaching element of the course and Employers as the Host Business also play a key role in the internships. The key is to develop a strong partnership between Employer, School, Supported Employment provider and the local authority or Government.
The Way Forward.
For supported employment to move forward in Gibraltar, it would be necessary to tap into the tremendous wealth of knowledge available within the UK and EU to achieve equal opportunities in skills, training, employment and job retention for young people with disabilities. This tried and tested model would enable a service to hit the ground running with help in recruitment as well as developing a supported employment agency with proper induction and training staff to run a successful employment practice. This would bring a sustainable strategy to enable the service to succeed and embed employment for people with disabilities within Gibraltar.
6. Supported Employment
Article by Robert Elston, Treasurer of British Association of Supported Employment (BASE)
I have been a practitioner of supported employment for 30 years working as an Employment Consultant, Manager and a Chief Executive. Delivering open employment for people with learning disabilities, I started working for one of the first employment services in Britain and the World Blakes Employment helping learning disabled candidates gain open paid employment. For the past twelve years I have been Chief Executive for Status Employment delivering supported employment to people with both severe and enduring mental health needs and common mental health needs. Where we have developed a number of innovative services around sport and supported employment, which has had tremendous success in getting more people with severe and enduring mental health needs into open employment. Also for the past twelve years I have been on the Board of the British Association of Supported Employment (BASE), where I am the Treasurer. At BASE we have developed the National Occupational Standards for supported employment, now we are delivering the incredibly successful certificate in supported employment. I have also been on the board of the European Union of Supported Employment (EUSE), where I have been Treasurer and Vice President from 2009 – 2015. There we have developed the Quality Standards for supported employment, the Disability Supported Employment Toolkit, and the Supported Employment Toolkit for Diversity.
Definition of Supported Employment
There are many definitions of supported but the one which I think is the most definitive is from the UK Government’s Valuing Employment Now. Supported employment is an evidence-based and personalised approach to support people with significant disabilities into real jobs, where they can fulfil their employment aspirations, and achieve social and economic inclusion. It should start from age 14 so that people can have meaningful work experience and Saturday jobs, as part of a person-centred employment pathway. Supported employment should achieve the following outcomes:
* Real jobs where people have the opportunity to earn equitable wages and other employment related benefits
* Development of new skills
* Social and economic inclusion
* Promotion of self-determination, choice and independence • enhanced self-esteem • increased consumer empowerment
* Increased quality of life where people are treated fairly and with respect. Real jobs are those where:
* Wages are paid at the going rate for the job, with the same terms and conditions as all other employees
* The job helps the person to meet their life goals and aspirations • the role is valued by managers and colleagues
* The job has similar hours and times at work as other employees, with safe working conditions. Real jobs are provided by different types of employers across the private, public and third sectors. It also includes self-employment, where a disabled individual may need access to specialist support for advice on business start-ups, help to spot commercial opportunities and to test and refine the proposition, help to launch the venture and help to grow the business. The overarching guiding principle of supported employment is that it is designed to support individuals who do not necessarily meet traditional criteria for ‘job readiness’ or ‘employability’. Fundamental to supported employment is that everyone can work, with the right job and the right support. Supported employment agencies should be able to offer a nil rejection policy, as everyone should have the opportunity to work and contribute to society. The other guiding principles of supported employment are:
* Choice and control – people are presented with a variety of experiences, options and support to achieve their career aspirations. Support is built around an individual, promoting choice. People choose and regulate their own employment support to promote career satisfaction. All options assume that the disabled person can and will be employed. 3 Supported employment and job coaching: best practice guidelines
* Partnership – there is genuine partnership between the person, their family carers, employers, community supports and the provider of supported employment.
* Full inclusion – people are supported to be full and active members of their workforces and wider communities, both socially and economically.
* Rapid job search – intensity of support is provided as appropriate, to ensure that the supported employment effort results in successful jobs in months rather than years.
* Customisation – when the demands of the open jobs market create a barrier, the employment relationship is negotiated to meet the specific needs of employers and job seekers (for example, if no job is likely to be advertised that would provide a good match for the jobseeker)
* Careers – people are supported to enhance their skills, providing opportunities for greater responsibility, compensation and challenge, as part of ongoing career progression and development.
* ‘Natural supports’ – employment support is as unobtrusive as possible and fades over time. It builds on, and uses as much as possible, community supports or social capital.
* Long-term support – long-term support is available to employees, employers, family carers and community supports, to ensure people maintain employment stability and achieve career growth.
* Assistive technology – creative solutions are found using assistive technology to increase choice, control and independence.
* Continuous quality improvement – people who receive supported employment are actively involved in developing and evaluating services.
* Right to work in a safe workplace – everyone is supported to work safely, underpinned by good risk assessment taking into account the workplace, and an individual’s skills, awareness and capacity.
* Protection of human rights and freedom from abuse – support is provided which prevents discrimination, abuse and neglect and upholds a person’s legal and human rights.
Who provides supported employment?
People from the age of 14 upwards can benefit from supported employment. It can support smooth and seamless transitions from education into employment and, if required, in employment on an ongoing basis. Support can be provided in work experience as well as in evening and weekend jobs. Support can be provided in whole or in part by schools, further education providers, Adult and Community Learning, Connexions, providers of supported employment, welfare-to-work providers, Jobcentre Plus providers, family carers, day services and community supports. The people who provide support tend to have a variety of job titles such as job coaches, employment advisers, employment consultants and employment support officers. Jobcentre Plus staff and Disability Employment Advisors are often a key referral route onto supported employment. A person’s line manager and colleagues in the work place can also provide support; they are sometimes called ‘natural supports’. It is important that everyone involved in providing supported employment is appropriately trained to understand and implement the evidence-based approach.
7. Press Release from Gibraltar Branch of Chartered Institute of Personnel and Development (formerly known as the HR Forum)
On the 19th March this year, Nicole Torres-Byrne hosted a Q&A session for members of the Gibraltar CIPD Branch on the subject of Supported Employment for members of our community who are considered to be disabled, in one way or another. CIPD Gibraltar believes that we need encourage employers to recruit people with disabilities and is keen to help raise the profile on these important issues. Creating an increasingly diverse workforce and creating rewarding employment opportunities for all is key to maximising Gibraltar’s competitiveness. Unfortunately introducing legislation is not the only answer to creating change in our community. It remains the case that people with disabilities are still seriously disadvantaged in the employment market, despite the introduction of the Equal Opportunities Act 2006. This results in continued unfairness, missed opportunities for the employment of people with diverse talent and skills; and frustration for those involved. We need to work together as a community to find solutions to ensure we offer engaging and satisfying employment opportunities to everyone in our community who has something to offer. Let’s shine a light on local employers who are already successfully doing this, and let them be the encouragement for others to follow suit.
The Gibraltar CIPD Branch (formerly known as the HR Forum) has over 110 members representing around 70 companies in Gibraltar. Our aim is to champion better work and working lives. The branch meets regularly throughout the year for training and networking events. It is open to anyone whose job involves an element of Human Resources, whether or not they are a member of the CIPD in the UK. For further information contact Gibraltar@cipdbranch.co.uk.