Living with Disability
This report is about disability and needs of the people with disabilities with further discussion on a specific disability. I will be examining the needs of a client with spinal cord injury and different relations, services, activities, standards connected with people affected by disability.
I will look at the disability services for people suffering from spinal cord injury, laws and legalisations connected with the organisation providing services for this people.
I will also examine the role and responsibilities of a stuff working in such setting, principles used to secure effective communication with clients, importance of good relationship with rest of the stuff, client and client’s family, barriers forced upon the ones with disability and ways to overcome it.
I will research my project and use sources of information such as the internet, books, reports, discussions with healthcare professionals but mostly my own experience.
People with disabilities are often seen as members of society who are dependent on others and have little to contribute. They are all too often seen as a ‘problem’ that needs to be fixed and society will sometimes look for the best ways to ‘fix’ the problem in ways that have the least financial and emotional impacts and without examining the needs of the most important person in this story – the person with disability.
It may be human nature to try to categorise people by various factors including age, race religion and sexuality so disability is just one more label that we are used to put on people. In reality, people fit into many different categories and disability may be part of whom someone is but that do not define the individual.
So many times thru my professional experience I had the opportunity to prove this theory. So many times I was amazed about how much people with disability can achieve and how little credit we sometimes give them. To be able to support this people in a productive way was one of the reasons I have this ambition towards my further education in the field. Because I believe if we give people with disabilities proper support, the one that is based on education and good information of the stuff, we can get from people affected with disabilities much more then we will give and certainly more than we expected.
History and types of disability
The reality is this. Society in every nation is still infected by the ancient assumption that people with disabilities are less than fully human and therefore, are not fully eligible for the opportunities which are available to other people as a matter of right. 1. (Justin Dart, disability rights activist, 1992, quoted in DEMOS, 2002)
Throughout history people affected with some form of disabilities have been treated differently from those who were considered as ‘normal’, to name a few: killed or abandoned, kept in cellars in different institutions, not being allowed out in public, there’s been involved involuntary sterilization of people with developmental disabilities, considered as defective, tortured in Nazi Germany , institutionalized regardless of needs, for example person with cerebral paralysis was considered mentally retarded, kept in separate institutions everywhere in world, not allowed to attend schools, abuse was applied all the time – physical, mental, sexual, financial, kept and dealt inhumane treatments and so on..the list is too long.
Legislation today is continually replacing these wrong views with ones that allow people of abilities to maximize their potential. Limitations may exist for those with disabilities but many of the additional obstacles have been removed and replaced with life hopes to stay ‘afloat’ but also the opportunity for smooth and respectable ‘sailing’.
Attitudes and stereotyping associated with disability
I don’t see disability as a tragedy. People have various forms of disabilities and some of those are acquired through age, and some are acquired because of poverty, and some are the result of being young—car crashes and wars and things of that nature. I see disability as a normal part of life. I look at it like, what do people need in order to be able to live their life like anybody else? 2. (Judith Heumann, quoted in Montes, 2007)
All the stereotypes connected with disability are coming out of ignorance and insufficient education or knowledge of people not affected by this condition. if we manage to change people’s attitude towards it we will be able to get the full potential of people affected by disability and give them a chance to lead a respectful and fulfilled life’s.
The society makes difference between people with disabilities and ‘the normal ones’ but not only that it’s also making the difference between different types of disability. These differences are base for many stereotypes and wrong attitudes that are promoted into society which tends to create wrong atmosphere when we talk about disability or when we handling it practically.
Models of care used within disability services
There is residential and non residential type of care offered to the people with disability, institutionalised and non institutionalised. Most of the times it depends of financial ability of the service user. People who are not financially unpowered suffer considerably poorer quality of life style. We have a lot of different charity organisations that are mostly responsible for empowering these people because the right support from government is sometimes and usually not enough.
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There are also long or short term stay facilities, there are services that are specialised for certain disability problem or genre or age of the service user. Sometimes there are combined models of care and services in place. This is all depending on need of the service user and proper assessment of the client that has to create right conditions for optimal support of the patient.
I am going to talk about services for people with spinal cord injuries because I have a lot of professional experience and theoretical knowledge regarding this condition and life style of people affected with it. As an example we will look at the Spinal injuries unit at Beaumont Hospital in Dublin where I work and what is offered to these patients initially in the hospital setting.
Key legalisation and policies relevant to this organisation
Here are some of the main pieces of legislation in the area of disability.
- Disability Act 2005
- Statutory Code of Practice on Accessibility of Public Services and Information Provided by Public Bodies.
- Statutory Code of Practice on Accessible Heritage Sites
- The Equal Status Acts 2000 outlaw discrimination in the provision of goods and services on grounds of disability
- The Equality Act 2004
- The Employment Equality Acts 1998 to 2004 outlaw discrimination in employment on grounds of disability.
- Education of Persons with Special Education Needs Act 2004
- Citizens Information Act 2007
- UN Convention on the Rights of Persons with Disabilities 3. (NDA National Disability Authority web page www.nda.ie)
As we can see all of these acts are regarding the well being and protection of many kinds for the people with disability. Our society is changing and slowly the general attitude towards disability is starting to improve.
Specifically in the hospital these legalisations and laws must be in place. Luckily here is everything monitored, checked, supervised and encouraged by many different services offered to patient inside the hospital setting. Initially in the hospital patient should be assessed properly but what happens afterwards, what type of care is provided is what counts long term. And long term is what these patient need.
In hospital there must be all about respect, holistic care, individualised approach, advocacy, privacy, right to choice, support independency, socialise, include into community where possible. In the hospital there is multidisciplinary team that takes care of the patient in all aspects and encourage their quality of life.
WORK FORCE AND WORK PLACE
People working within these types of services
You just have to be that kind of a person. As cliché as it sounds but here is really that kind of story. You just have to be a caring person, a brave one I would say, open hearted and sometimes stubborn. But at the end of the day these are people with big hart and a lot of professional knowledge.
Roles and responsibilities of the staff
There are several responsibilities of support worker in any setting towards the service user which includes but are not limited to – promoting independence, dignity, privacy, self-esteem, person centred care, hygiene, confidentiality, report end document all changes in patients general state of being, support patients independence, his mobility, nutrition, social needs and socialisation in general and many other. Most of the time it’s just to be a friend, a person of trust and even shoulder to cry on if necessary.
In hospital setting there is multidisciplinary team and roles and responsibilities are divided precisely and according to individual need of the patient. Being a good team player is essential.
Principles used in communication with service users
During my years of working with people with different types of disabilities I witnessed many times how good communication can have a major impact in our general relationship with service user. We should always allow enough time to exchange the information, show patience and calmness. It would be good if we could asses the patient’s communicational and even language skills so we could approach him in a best possible way for him. It is not same if we talk with person with mild communicational difficulties then someone with moderate or severe. Some people have stronger understanding skills then communicational skills so our impression of their understanding doesn’t have to be true at all. We should be observable enough to always check patient understanding. Some people won’t be able to put in words their feelings and symptoms so involving always the same team of professionals who monitor their condition should help in creating relationship of trust and making the space to get to know the patient. Some patients could have a delay in answers so we can feel that their thoughts are coming from nowhere but if we listen then carefully we should notice this is happening and react. Some people can’t stand the noise, some people use body language to tell as something, some people give answers by face expressions.. Identification of this and many more can help to involve right principles into and make the communication more efficient and clear.
Importance of good relationship with partners
When we say ‘partners’ we think about several relations regarding the patient or service user. Our role is not only to have great professional relation with our patient but also with his family, with our colleagues, with other members of the team and with external associates. Good relationship with this entire list of people will make a perfect foundation for quality care delivered to service user. Good relationship is not only technical term but it also demands great emotional involvement and to make a good fusion between these two qualities is something that makes quality professionals.
At the end of the day as better relationship with partners we have more beneficial will be service user and that is what counts the most.
Barriers faced by those with disability
I already spoke about barriers for people with disability when I was talking about stereotypes and attitudes towards people with disabilities but talking further more about it I can say that there is a huge spectrum of barriers facing people with disability but maybe I can say that the main ones are regarding – a physical environment that is not accessible, lack of relevant useful technology, negative attitude of people towards disability and at the end services, systems and policies need to be improved or in some cases written because what we have now is full of places for improvement and change. Stigma as one of the main barriers, social barriers, communicational barriers, physical barriers, intellectual barriers just to name a few concepts that people with disability need to brake.
Strategies used to overcome it
Strategies used to overcome it are different and vary from parson to person but we as professionals working with disable people must always keep in mind to promote their independence, to give them dignity and respect and to give them right information about things that are about them. The best strategy is always education and right information. To get to know your rights, the best way is to become a member of one of the organisations that is involved with people with the same problem. To surround yourself with people who care and give the support is the best strategy one can have.
Working on this essay showed me some of the facts I was not aware in that amount and reminded me to remember why am I in this profession and what are the main principles I am applying when working with disable people. It made me to make a certain professional ‘check up’ of myself by writing about my thoughts on the subject.
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To conclude in the short version I should say that one of the important things is to always try to maintain person centre care and promote dignity, independence, advocacy, self esteem, freedom, possibility of choice and try to be aware as much as possible of your client needs and wishes. Don’t be afraid to be curious when working with your client, ask questions, explain procedures, involve client in the process, get the return information from him.
Be informed, try to improve your knowledge thru specific courses and observations, always try to put your time and effort in learning and improving, share your knowledge and information with other colleagues and your team, your supervisor, have a vision, be creative, listen, understand.
Don’t take things too personally and the effect of your work will be reworded. It is not always easy to remain self control especially when you work hard and with that much sensitive group of people but you have to know that no matter how it may sound or look at first mostly all of our patients negative behaviour are not personally directed towards us.
- (Justin Dart, disability rights activist, 1992, quoted in DEMOS, 2002)
- (Judith Heumann, quoted in Montes, 2007)
- (NDA National Disability Authority web page www.nda.ie)
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