Congenital and aquired disabilities
Congenital and aquired disabilities
Centrality means looking at the individual as a whole and putting them at the centre of everything. Therefore person centred planning is an essential aspect of this. This should be holistic and focused on the individual’s needs, lives, history and preferences. By focusing on all aspects of an individual including aspiration will ensure their wellbeing and self¬-esteem is maintained. Person centred care aims to promote the independence and autonomy of an individual rather than focussing on their disability. Instead of treating the person as a collection of symptoms and behaviours to be controlled, person centred care means considering the whole person, taking into account each individual’s unique qualities, abilities, interests, preferences and needs. Person centred care also means treating individuals with dignity both respecting and promoting choice and independence at all times. Ensuring individuals are treated with a holistic and person centred approach will promote an individual’s feeling of individuality and self-esteem.
Having a disability should not determine whether or not an individual’s aspiration cannot be met, choices and decisions need to be addressed with the individual at the centre of all planning to assist them to achieve their goals. Within my own organisation I had the opportunity to review an individual’s care package. The client resided in a nursing home and the review took place with a family member present. The client was largely immobile and aphasic, was unable to communicate and unresponsive to the care workers. At the review I encouraged the family member to provide me with as much information as possible on client’s life including their career, family, achievements, preferences and lifestyle. This allowed me to build a profile of the individual’s life which I passed onto her regular carers. I also encouraged the family member to purchase a device which would allow the client to communicate electronically.
This prompted a purchase of an Ipad. Being prompted of important events, achievements and people from her past prompted a response from the client and enable carers to communicate with the individual with choices regarding her care. This allowed us to provide care that was more specific to the client’s needs and therefore provide a better service of care specifically tailored to her preferences. By promoting and facilitating greater patient responsibility, clients are more likely to engage in treatment decisions. It also helps them to feel more supported and could affect changes in their behaviour and generally feel more empowered to self manage. Another example of the importance of person centred approach care involved a client which transferred to our organisation from another domiciliary care provider.
The client has previously had a care package set up by the former agency and she was oblivious to the fact that important decisions regarding her care (for example, times of her visits, gender preferences and choice of consent or refusal of treatments) were choices that were available for her to make. At assessment and on further reviews with the individual I explained to her that she was to be involved in all aspects of her care. I went onto to further explain that as an organisation we could provide her with care, compassion and respect that accord with her values, goals and beliefs. When focusing on individual’s strengths and aspirations rather than their needs only, different outcomes may occur. All aspects of a person’s requirements and abilities must be taken into account to ensure they receive the contact level of care required. For example, allowing an individual with a severe disability such as cerebral palsy to take an unmanageable and dangerous risks may promote their choice and independence and aspirations but could affect the safety of themselves and others.
This includes anatomical loss of musculoskeletal, neurological, respiratory or cardiovascular impairment. Physical disabilities can be either congenital or acquired after birth as a result of accident of disease. Examples of physical disabilities include orthopaedic impairments, health impairments (such as a heart conditions), rheumatic fever, asthma, haemophilia, motor coordination and mobility impairments. People with physical disabilities, also known as disabled people or physically disabled people, have a physical impairment which has a substantial and long term effect on their ability to carry out day to day activities. Congenital disability is a condition existing at birth which may or may not be due to genetic factors. Here are some examples of congenital disabilities:
– Spina Bifida
Spina bifida is a fault in the development of the spine and spinal cord which leaves a gap in the spine. The spinal cord connects all parts of the body to the brain. During the first month of life, an embryo (developing baby) grows a structure called the neural tube that will eventually form the spine and nervous system. In cases of spina bifida, something goes wrong and the spinal column (the bone that surrounds and protects the nerves) does not fully close. Spina bifida is also known as split spine. The exact causes are unknown, but several risk factors have been identified, the most significant being a lack of folic acid before and at the very start of pregnancy.
The muscular dystrophies (MD) are a group of inherited genetic conditions that gradually cause the muscles to weaken. This leads to an increasing level of disability. MD is a progressive condition, which means that it gets worse over time. It often begins by affecting a particular group of muscles before affecting the muscles more widely. Some types of MD eventually affect the heart or the muscles used for breathing, at which point the condition becomes life threatening. There is no cure for MD, but treatment can help manage many of the symptoms. MD is caused by changes (mutations) in the genes responsible for the structure and functioning of a person’s muscles. These mutations cause changes in the muscle fibres that interfere with the muscles’ ability to function. Over time, this causes increasing disability. Acquired disability is those caused by accident or disease, some examples of these is:
Arthritis is a form of joint disorder that involves inflammation of one or more joint. There are over 100 different forms of arthritis. The most common form, osteoarthritis (degenerative joint disease), is a result of trauma to the joint, infection of the joint, or age. Other arthritis forms are rheumatoid arthritis, psoriatic arthritis and related autoimmune diseases. Septic arthritis is caused by joint infection. The major complaint by individuals who have arthritis is joint pain. Pain is often a constant and may be localized to the joint affected. The pain from arthritis is due to inflammation that occurs around the joint, damage to the joint from disease, daily wear and tear of joint, muscle strains caused by forceful movements against stiff painful joints and fatigue.
Rheumatism is a general and non-specific term used to describe symptoms of pain in joints, muscles and surrounding soft tissue (known as connective tissue). The word is no longer used by doctors but may be heard in conversation by the older generation – eg. “I have a touch of rheumatism”. The symptoms are said to feel like “a flowing pain”, affecting the joints, tendons, muscles and ligaments of the body. Years ago physicians had a limited understanding of inflammation and bundles all painful disorders of muscles, bones, joints and soft tissues into one big box and labelled it rheumatism. With the advancement of medical knowledge over the past 50 years we now know that ‘rheumatism’ covers a wide range of health conditions and symptoms
– from local inflammation of one specific joint or area of the body to more generalized conditions giving rise to pain in joints and muscles such as rheumatoid arthritis. Neurological disabilities are caused by damage to the nervous system (including the brain and spinal cord) that results in a loss of some bodily and mental functions. Heart attacks, infections, genetic disorders and lack of oxygen to the brain may also result in a neurological disability. Disability at any time can bring about profound changes to lifestyle and attitudes. Acquiring an illness or accident affects not only the person with the disability but family and friends as well. It becomes a dividing line of before and after and requires any number of adjustments physically, emotionally and psychologically. The emotional impact of a progressive disability on an individual and family can be devastating. Dealing with lifetime impairment can cause depression, anger and need to blame.
Negative emotions must be dealt with in order to move on with learning to adapt to the individuals evolving care requirements. A disability may make family members uncertain of how to approach or interact with the disabled person. Friendships and relationships may be a casualty for a person already struggling with how to live with their new limitations and financial burdens. Individuals with congenital disabilities have always had the disability therefore have not known any different. Their disability has always been a fundamental part of who they are and no adaption’s have been required.
Those with progressive disabilities have become used to being disabled and have learnt to adapt both physically and emotionally. Those with progressive disabilities had the opportunity for some development to take place. Those with congenital disabilities did not. For example someone who has always been blind has no experience of sight for reference whereas someone with progressive blindness has knowledge of what the world looks like which is useful.
Multiple sclerosis (MS) affects nerves in the brain and spinal cord, causing a wide range of symptoms including problems with muscle movement, balance and vision. Each nerve fibre in the brain and spinal cord is surrounded by a layer of protein called myelin, which protects the nerve and helps electrical signals from the brain travel to the rest of the body. In MS, the myelin becomes damaged. This disrupts the transfer of these nerve signals, causing a wide range of potential symptoms, such as loss of vision, (usually in one eye), spasticity, ataxia and fatigue.
A stroke is a serious medical condition that occurs when the blood supply to part of the brain is cut off. Like all organs, the brain needs the oxygen and nutrients provided by blood to function properly. If the supply of blood is restricted or stopped, brain cells begin to die. This can lead to brain damage and possibly death. There are two main causes of strokes: •ischaemic (accounting for over 80% of all cases) – the blood supply is stopped due to a blood clot •haemorrhagic – a weakened blood vessel supplying the brain bursts and causes brain damage There is also a related condition known as a transient ischaemic attack (TIA), where the supply of blood to the brain is temporarily interrupted, causing a ‘mini-stroke’. TIAs should be treated seriously as they are often a warning sign that a stroke is coming
The term progressive disability is an illness or medical condition that is expected to worsen over time. Well known examples of progressive illness include multiple sclerosis, motor neuron diseases, Huntington’s chorea, muscular dystrophy and Alzheimer’s disease. Congenital disabilities are unlikely to have an impact on an individual and their family as physical limitations have already been recognised. Progressive disabilities are likely to have major impact on an individual and their family members as physical limitations and increasing care requirements will affect all individuals involved with the disabled person. People with disabilities can face many environmental barriers. These barriers can include the person, the type of the disability and many other factors. There are six broad types barriers. 1.Physical barriers such as accessibility can be caused by buildings, stairs, hills, doorways, even the weather and the climate. 2.Attitude barriers are to do with prejudice and discrimination. These can keep an individual from being as productive and successful. 3.Assistance barriers such as lack of transportation or a lack of good information or medical care.
4.Policy barriers such as governmental rules. They may hinder an individual with accessing the required educational, employment or service programmes required. 5.Work and school barriers- are people you interact with at school or work positive and helpful? 6.Social barriers can have a disabling effect on an individual with a disability such as attitudes, inability to access leisure facilities such as sports/recreational establishments, cinemas, etc. Limiting choice and lifestyle for the individual’s and can cause lack of access to the things they enjoy. Socio-economic effects of physical disability on an individual can include the inability to earn an equal wage and limiting opportunities to develop and further an individual’s career due to being sidelined in favour of someone with no physical disability. Being viewed as low status because they are perceived as being ‘in need’. Socio-economic affects can affect an individual’s ability to pay for equipment and support required which can have a dramatic impact on an individual’s quality of life and feelings of self esteem.
Changes in legislation such as the ‘Community Care Act’ have enabled individual’s to become more involved in the community where they can now be seen and accepted by society. Equality legislation such as the ‘Disability Discrimination Act’ made it illegal to treat people with disabilities in less favoured way to others e.g. access to services/buildings. This has ensured individuals with physical disability accessibility to the wider environment and facilities. Examples are provision of ramps and lifts in shops, car free zones in town centres and disabled parking badges and areas. The provision of day centres and support groups also provide inclusion for people living with a physical disability. The increased availability of internet and IT equipment enables individuals to work from home. This has an impact on increasing independence, inclusion and financial security. These improvements increase the opportunities available to an individual, therefore enabling them to lead constructive and emotionally fulfilling lives. The impact a physical disability can have an individual’s life choices can be destructive.
They can affect an individual’s ability to control where they live (their home environment), if they can maintain or make progress on their career path, whether they can establish a social life etc. For example an individual with a severe progressive physical disability who enjoys living in a high rise flat may be unable to do so if there are limitations to accessibility to a lift or unsuitably sized doorways of which the individual is unable to make alterations or renovations. Attitudes can either promote a positive or negative perception of disability. Some people see the disability rather than the person. They look at what the individual cannot do and then place barriers for development and progression. They feel sorry for the individual and perceive them as needing to be ‘looked after’ and this can affect the individual’s self perception. They can become dependent with learned helplessness. This in turn supports the negative view. Others look beyond the disability and see the individual. Disability becomes just an issue to be dealt with and they support the individual to be the best they can be. The individual can develop positive self esteem and become much more independent.
Positive attitudes are upheld by achievements. Strategies to promote independence and inclusion include encouraging the individual wherever possible to achieve and maintain day to day aspects of their own lives. Promoting, assisting and encouraging an individual rather than ‘taking over’ can have a long lasting and beneficial effect on an individual’s self esteem and provide them with feelings of self worth. It is imperative that individual’s have control and choice in all aspects of their care and lifestyle. Regular reviews and ensuring person centred care alongside providing access to all possible information. Positive risk taking allows the individual to maintain a safe and well balanced life reaching their full potential. This ensures an individual makes use of opportunities therefore exercising choice and promoting independence. People can learn from experience and develop new skills by changing and growing in confidence. It is important to encourage individuals to take positive risks while remaining safe to enable them to feel empowered and for others to develop an understanding of an individual’s responsibilities. It is important to enable people to access opportunities wherever available.
Tolerating short term risks promotes long term gains by ensuring reviews and gradually withdrawing inappropriate services that create dependency. Effective identification, assessment, management risk and review of incidents will enable an individual to manage and assess any risks and make the appropriate decisions. One example of encouraging positive risk taking I have encountered was when a client I was involved in the care of an individual with an acquired physical disability. The lady involved was in a wheelchair and had stopped attending her weekly visits to a local museum of which she was a patron. The client felt that the museum did not have the required facilities to allow her to attend and she was unaware of any wheelchair friendly transport options. I assisted her with obtaining the relevant information and encouraged her to telephone the museum in question where we found that they did in fact have disabled facilities. We then researched wheelchair friendly taxi services in the area and found a company who had a vehicle which could accommodate my client.
My client set up an account and regular service with this company enabling her to continue to attend her weekly meetings therefore ensuring inclusion and enabling her to carry on with her precious social routine. If I were called upon to challenge stereotypical or discriminatory attitudes I would endeavour to assist the person involved by encouraging and promoting knowledge of the physical disability. I would explain the importance of respecting the individual and assist to promote independence. I would ensure that the individual was treated with compassion, dignity and respect. I would encourage the individual being discriminated against to be more actively involved, the person responsible for the stereotypical and discriminatory attitudes should receive further training, one to ones and regular observations. If this kind of reaction is encountered when accompanying an individual in the community it is imperative not to create an atmosphere or any embarrassment to the individual. Wherever possible calmly inform the discriminator of their wrong doings. It is important that the client is not emotionally affected and suffers no adverse affects.