SCI Primer/Going Home
After being in hospital for many weeks or months with a spinal cord injury (SCI), going home may seem a great event to look forward to.
But it takes a great deal of careful preparation for a person with SCI to learn the skills that they will need to take care of themselves, to adapt their home and possibly to set up a 'care package' they may need so that they can lead an independent life.
Indeed, much of a spinal cord injured person's stay in hospital focuses on preparations for going home as well as on medical treatment.
Every individual will need to decide early on while in hospital where they wish to make their home and who, if anyone, they are going to live with. If they were living at home with family (for example a partner and children) this question may be easily answered. But, for many people, such questions can create a great dilemma. It is important to think not only of the short-term, but also of the likely situation in four or five years' time, as it may not be easy to change living arrangements once they have been made. For example, once a Disabled Facilities Grant (see the 'Financial info' section) has been obtained to make structural alterations to a home, it may be more difficult to get another similar grant in the future.
Talking to other people with SCI (e.g., via the Spinal Injuries Association Link Scheme – see below), nurses, hospital social workers and the independent living advocate, if there is one, will help with reaching a decision. The best solution is likely to be the one that provides the most independence. Usually, people with SCI will go home for a 'trial' weekend or two before being finally discharged, and there may be a flat or suite set up in the spinal injuries centre where the individual and their family can practice managing on their own, while the hospital staff are close at hand.
If someone returns to the home that they were living in before their injury, a major issue can be making the physical adaptations required to allow them to gain access. The hospital's occupational therapist (OT) can assess the individual's home and advise them on the changes that need to be made. If the home is not ready to return to by the time the person with SCI is to be discharged, they may have to go to an 'interim placement' – either a Nursing or Residential Home, a Young Disabled Unit (YDU), or another hospital closer to their home.
It is possible that some homes may not be suitable for adaptation and alternative properties will need to be found. People may wish to buy or rent a property. Again, an OT will provide advice on what should be looked for. It is worth bearing in mind that this process can take several months.
Before going home, the needs of a person with SCI will have been carefully assessed to ensure that the person has any appropriate support that they require. People with SCI may have a 'Case manager' assigned – someone who may come from a variety of backgrounds, e.g., nursing, occupational therapy. The case manager can identify the person's care needs, together with social, psychological, housing, employment and rehabilitation needs. He/she can liaise with all the appropriate agencies on the individual's behalf to make sure that, wherever possible, those needs are met. Many other people may be available to help, including a social worker or a care manager who would be responsible for arranging and monitoring the care package.
On a day-to-day basis, once the person with SCI has arrived home, a career – either a member of their family, a paid personal assistant or a home care assistant – could help with the basic needs that the person is unable to do by themselves, with a district/community nurse attending to nursing needs (e.g., bladder and bowel management), should this be required.
By the time a spinally injured person goes home, they will probably know more than their GP, or any of the other professionals they deal with, about their specific needs and the best way of meeting them. It may be necessary for them to insist that they are the best judge of what their own needs are; it is important to try to be polite but firm. With family and friends, it helps to be as frank as possible. The injured person should say what they can do for themselves without assistance, and explain what assistance is needed and when. People should realize that a person with SCI is the same person they have always been, with the same need to make their own, independent decisions about their life.
2. Independent living
Living independently does not necessarily mean living alone. It means living in such a way that an individual is responsible for, and in control of, their daily life and can set and achieve their own goals.
For someone with spinal cord injury (SCI), the key to such independence is the ability to obtain assistance with the tasks of daily living that they are unable to perform on their own. This section focuses on the means of obtaining such assistance.
'Community Care' is defined as 'providing the right level of intervention and support to enable people to achieve maximum independence and control over their own lives'. Under various Acts, Regulations, directions and guidance, local Social Services and Health Authorities provide a wide range of services, i.e., home help/care workers, home visits, meals on wheels, district/community nurses, hospital after-care schemes, incontinence and others. Where people find care services to be inflexible and imposing restrictions, they can employ their own personal assistants through a wide range of sources.
A Local Authority has the power to charge a reasonable amount for services that either they provide or arrange for their clients. Many Local Authorities are introducing new or increased charges and can have policies that are more generous than the guidance. New guidelines have been issued giving Local Authorities a framework to use when working out their charging policies. The guidance will be implemented in full by April 2003.
The Community Care (Direct Payments) Act 1996 allows a person aged 16 or over who has been assessed as needing care services to receive cash to arrange and pay for their own services provided directly by Social Services and others arranged by themselves. Guidance given to Local Authorities encourages them to ensure that support for Direct Payment users is available. Direct Payments cannot be used to pay for services from a spouse or partner, or from a close relative living in the same household. In exceptional circumstances, however, a Local Authority can make Direct Payments to employ a close relative who lives elsewhere, or to someone else (but not a close relative) in the same household 'if it is satisfied that is the most appropriate way of securing the relevant services'. The Act requires Local Authorities to make Direct Payments at a rate equal to their estimate of the reasonable cost of the service to meet the assessed needs.
Alternatively, a Care Agency should be able to provide trained and vetted staff on either a short- or long-term basis and generally act in the best interests of their client in all matters relating to their care. Many good agencies are members of the UK Home Care Association (UKHCA). The staff provided by an agency should be able to provide assistance for individuals with SCI that contributes to the day-to-day requirements of their care package, whilst leaving them with sufficient flexibility to live the way they wish. If clients want, the agency can also change the care staff involved, thereby enabling clients to draw on the experience of different careers and choose the person with whom they get on best to work with in the longer term.
Employing a personal assistant directly can be significantly cheaper and may give more flexibility and control than using agency staff. The advantages are that individuals with SCI choose their own assistants, and, since they are the employer, they define what they want them to do and when they are to do it. People with SCI themselves train the assistants to do things the way they want them done. However, this does involve certain additional and potentially onerous responsibilities. Individuals have to recruit, vet and train their own assistant; as an employer they need to do the tax and national insurance for their employee, plus pay employer's national insurance contributions, statutory sick pay and holiday pay. If anything goes wrong, they will have to warn and, if necessary, dismiss them; and if an assistant goes on holiday, falls ill or leaves, as an employer, the person with SCI will have to make their own arrangements for temporary cover.
3. Feeling & coping strategies
The devastating trauma caused by spinal cord injury means that it is equally important for emotional needs, as well as physical and practical needs, to be addressed. But just as there is no magic cure for an injured body, there is no instantaneous way of healing psychological pain.
It may be helpful for an SCI injured person to: know that their feelings are a natural and understandable response to what has happened recognize what they are going through and how it affects themselves and others realize that they are not alone, and such feelings are experienced by other people with SCI express their feelings, share them with others and, if necessary, talk to a professional counselor for support.
Relationships can be particularly stressful early on, but sharing feelings and being open about needs, fears and hopes can help others to attempt to understand what the SCI injured person is going through. Indeed, many relationships have been deepened and enhanced after SCI by the honest sharing of feelings, closeness and love.
Body image and self-esteem may also be severely affected. But, they too can be recovered – a person with spinal cord injury (SCI) is still the same person they ever were and many thousands of people go on to lead happy and successful lives with SCI.
Coping with the many physical challenges of spinal cord injury, emotions (one's own as well as other people's), as well as organizing needs, can inevitably be stressful, so strategies for coping with stress may be useful. Having a positive attitude and the belief that something can be done about a situation can help someone with SCI come through in the end. It is worth bearing in mind that everyone has choices and opportunities and it is up to each individual to choose the life that is best for them.
Finally, it is worth remembering that there is plenty of practical and emotional support available for those with SCI, provided the motivation is there to look for and access it. In particular, it is important to stay in touch with the Spinal Injury Centrex and Consultant. The Spinal Injuries Association (SIA) Helpline can also help people with SCI to share experiences through the Link Scheme. This can be accessed through the SIA's Helpline Service. The free phone helpline is 0800 980 0501 (SIA Members only) or 020 8444 2121. Anyone opting for professional counseling should always check the counselor's credentials first and choose one who is registered either with BPS, BACP, UKCP or BABCP.
It is important to know that people with spinal cord injury have a right to appropriate housing.
Many disabled people go into residential care because that appears to be the only option, or for younger people the only way to leave their parents' home. Others are unable to escape from unhappy relationships or living situations because they believe or are told that they would not receive grants to adapt a property for themselves.
Lack of cooperation between Social Services and Housing Departments often leads to delays and sometimes to insurmountable barriers. Often, the professionals who give advice are not properly aware of the legislation concerning homelessness, adaptation grants, and the duties imposed under community care legislation.
As a result, it is essential for an individual to know their rights, know where to get advice, and be prepared to fight every inch of the way to obtain a solution which is right for them. An excellent and easy-to-understand summary of the law and rights to housing, adaptations and equipment as well as legislation on Care in the Community is contained in the book by Jenny Morris (herself spinal cord injured) entitled 'Community Care – Your Rights to Housing and Support' (Pavilion 1997).
There are a number of different housing options available such Council housing, housing associations, private rented housing, purpose-built developments, self-build, buying an existing property or living in a mobile home.
A disabled person can be assisted with their housing needs through the Homelessness Act. The Housing Act was updated in 1996 and this affected how homelessness and housing needs should be defined. It is a very complex area and the wording in the Act is crucial to its implementation. Shelter (Tel: 080 8800 4444) can give further advice and assistance.
Before being discharged from hospital after injury, a person with SCI will almost certainly have to carry out some modifications to enable accessibility both to their home and inside it. The home may appear unsuitable and an individual may decide that it would be better to move to a different one. Yet, in other respects, this may not be the wisest choice since an individual has enough to cope with without facing all the stresses and strains of moving house. After a long spell in hospital, familiar faces, places and friends can be very welcome and so it may well be better to make the minimum adaptations to live in the existing home for the time being and contemplate moving at a later date.
In considering possible adaptations it may help to work through a checklist of questions regarding aspects such as location, vehicle access, general accessibility and practicalities of doors, steps, floor surfaces, utilities, sleeping arrangements, toilet arrangements, etc. A detailed checklist and an 'access audit' is provided in Designing for Accessibility, an introductory guide produced by the Centrex for Accessible Environments (see list of 'Useful contact details'). Three important pieces of advice worth bearing in mind are: don't over-adapt, don't over-spend and do consider how the changes that are made will affect the other people living in the home. In the first few years after an injury, there will be continual adaptation to new circumstances. So, what appears best at first may, in a couple of years time, seem quite unsuitable. Finally, if the home has a garden, don't forget to make it accessible as well
5. Mobility & access
'Mobility' is the means of moving around, while 'access' is the means of reaching and getting into places. More than anything else, these two factors determine the extent to which someone with SCI is disabled. It is hardly surprising, therefore, that mobility aids – principally wheelchairs or walking aids – are the most important tools for daily living for most people with SCI. So vital are these tools that there are now several Mobility Centres around the UK, as well as a yearly Mobility Roadshow where every conceivable type of mobility aid is on view or for sale.
Different types of wheelchair and walking and standing aids are covered in the 'Products' section of this site. Here, we will look more at the process of getting and choosing the most suitable product(s) for the individual's needs.
If the spinal cord injury is incomplete and the person can stand and walk to some extent their consultant and physiotherapist could prescribe appropriate mobility aids – typically callipers, splints, crutches or other aids for walking, and frames, parallel bars, chairs and hoists to facilitate standing. These aids are normally provided on long-term loan through the NHS or through social services (via a community occupational therapist).
If the injury is complete, the person will have to choose from the hundreds of different types of wheelchair now available. There are two main sources of wheelchairs: free of charge on permanent loan from the District Wheelchair Services of the NHS by private purchase, with or without a grant (provided by various charitable organizations) or loan or a voucher (to the value of a chair that would be provided by the wheelchair services – the individual pays the difference themselves).
A wheelchair must give good mobility and be comfortable and safe to sit in. It must support the user, enable them to balance, provide a good seated posture and minimize pressure on sensitive parts of the skin. If the chair looks good, this helps the individual to feel confident – some people feel about their wheelchair the way others do about a car. Normally, people will be measured and assessed for a wheelchair by a professional from the spinal injuries unit or wheelchair service. A suitable wheelchair cushion, specially designed for pressure relief, postural support and comfort, is also necessary; again there are many different types to choose from.
Many wheelchair users have more than one chair, each for a different range of activities. For example, an ordinary self-propelled wheelchair for everyday use and a lightweight one for sports; or a self-propelled wheelchair for indoor use and a powered one for outdoor use; or even a second wheelchair at work or college to avoid transport problems.
Access, or rather the lack of it, for a disabled person, is about the way the environment in which we all live is designed and built. Fortunately, access for disabled people has improved in recent years, particularly in terms of public transport, but there is still a long way to go. In the meantime, journeys and outings usually have to be planned carefully in advance to check that specific needs will be met. This is especially important before booking travel and holidays. One of the best ways of finding out about access to public buildings, toilets, shops, restaurants and forms of transport, is to contact the local tourist board as they usually have these details incorporated into brochures. The other avenue is to contact the local Shop mobility scheme or the Disablement Officer at the local council offices.
Access is a fundamental right. Unfortunately, it is one that will almost certainly have to be pressed for on many occasions.
6. Training & studying
Opportunities for disabled people to train and study have improved in recent years. But, while the opportunities are there, disabled people still need considerable determination and commitment to obtain support and achieve full participation in their chosen course or training.
Further education encompasses A-levels or Access courses, work related courses such as those leading to National Vocational Qualifications (NVQs) or BTEC National Diplomas, basic skills courses or courses that do not necessarily lead to a particular qualification (e.g. independent living skills). Such courses, provided for people aged 16 and over, may be followed in a range of institutions, from colleges to adult/community education centers. There are no tuition fees for people under 19 (under 18 in Scotland); anyone over these ages needing financial help with daily living expenses or with the cost of fees/books etc, may be able to apply for a discretionary grant from the local education authority. Colleges receive money from their funding bodies to pay for additional support needed by students with disabilities so, theoretically, there should be no financial barriers to further education for a disabled person.
Higher education encompasses any course that leads to a certain level of qualification, such as degree courses (undergraduate and postgraduate courses), Diploma of Higher Education, Higher National Diploma, or Postgraduate Certificate of Higher Education. These courses are offered in universities and colleges around the country; they can last from 2 to 5 years and may include work placements. To be eligible, individuals have to have certain prior qualifications e.g. A levels, Advanced GNVQs, an Access Certificate, etc. The normal application procedure is through the Universities and Colleges Admissions Service (UCAS). Many institutions have a disability officer who will be able to discuss what is available in terms of practical support.
Most places on undergraduate higher education courses are eligible for state funding (typically via local education authority grants). Student contribution towards tuition fees is means tested and any additional funding required is via the student loan system. Students with disabilities are treated in the same way as non-disabled students except that if extra costs are involved because of the student's disability, they may be able to delay the start of loan repayments and make them over a longer period. Also, they may be able to get extra funding from the Disabled Students' Allowances (DSAs). These allowances are intended to cover any extra costs or expenses students have while in higher education that arise from their disability. They are not means-tested. Contact Skill (The National Bureau for Students with Disabilities) for further information (See 'Useful contact details').
Each university or college has a Hardship or Access Fund to support students who, for financial reasons, may not otherwise be able to do their course, or who find it hard to meet their living costs, e.g. because of a disability. It is open to full- and part-time students on further education, higher education and postgraduate courses. Awards are made at the discretion of the college.
It is possible to take time out, repeat a year, transfer course or adjust the study in some way without jeopardizing local education authority funding. This can be particularly useful for disabled students.
Many colleges now offer open and distance learning courses. These are part- or full-time courses allowing individuals to study at home, or at work, in a flexible way. They are often particularly suitable for students with disabilities but considerable self-discipline may be needed to study independently, although study support, seminars, tutorials and summer schools may be offered as part of the course.
Careers advice is now available from a number of sources: local careers services, many of which have a specialist officer with experience of advising people with disabilities; careers advisers attached to colleges of further or higher education; and local Job Centers. Job Centers may have a Disability Employment Adviser who can give information about local employment and training opportunities. Residential training may be available if a disability prevents a person from entering local training provision. The government's New Deal for Disabled People programmer is a scheme designed to make it easier for disabled people and people with long-term illness to get back to work. A personal adviser can help to identify strengths and abilities, whether work is suitable and if the individuals would benefit from further training.
If a disability makes it difficult to find and keep a job in the open market, supported employment may be an option. This offers the opportunity to work in many different types of jobs at one's own pace and in the way that best suits the individual. Some of the types of placements available include manufacturing work, horticulture, catering and office services. Individuals will be given the training required to do the job and will be paid the same wage as other employees doing the same or similar work.