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Introduction
The National Reye's Syndrome Foundation of the UK offers the following information to parents of children who have experienced Reye's Syndrome (RS). It is furnished to provide assistance in understanding the potential needs of the RS survivor and the family and in addition, to provide guidance in securing any necessary services.
It is possible for the RS survivor to recover completely with no after-effects or no apparent changes in the child. There may, however, be recovery with brain damage and disability ranging from very slight motor or learning disabilities to profound brain injury
What are the potential problems of the RS Survivor
Reye's syndrome can result in brain damage and disability in some survivors. The number of cases of RS which fall into this category is unrecorded. If damage occurs, it can range from slight to profound, depending on the individual case.
Rehabilitation will range from minimal medical intervention to residential care. Since there is such a wide range of possibilities, and since these possibilities are to a certain extent unpredictable, parents need to become aware of the potential problems and the appropriate services which may be required. Early evaluation following physiological recovery should be pursued for the purpose of identifying problems and beginning any appropriate educational rehabilitation and/or therapy.
Specific problem areas which may be observed include the following:
- Problems with attention
- Problems with memory
- Problems with vision
- Problems with hearing
- Difficulties with concentration
- Speech and language difficulties
- Problems with fine or gross motor skills
- Changes in the child's activity level
- Problems with task completion
- Increased level of dependency
- Difficulties in swallowing, chewing
- Difficulties with toilet needs
- Difficulties in dressing
Any specific problem may occur individually or in combination with others. Any or all of the above may manifest themselves in learning or academic problems. For example, a change in academic performance may reflect a change in the ability to attend or to concentrate on a task. Difficulty with maths, spelling, writing, or reading may occur.
A pre-existing learning problem may become more severe following RS. Also some RS survivors may appear immediately upon recovery to have no residual effects; however, problems may later be observed in the areas mentioned above.
Check that you have an early appointment with a local paediatrician who should know what services are available locally. He or she should help to organise both evaluation and therapy, and is also the source of information to the educational authorities. Under the terms of the 1993 Education Act they have a responsibility to make the necessary arrangements for children with special educational needs and/or behavioural problems. The process should take no more than 6 months.
Evaluation for learning disabilities requires a multi-disciplinary team consisting of the child's paediatrician, neurologist, psychologist, educationalist, the family and possibly others such as a speech therapist, physiotherapist and occupational therapist. Such evaluation can be requested by the parent through the local authority.
When the child comes home from hospital
There are many adjustments required by the family suddenly faced with the fact of a brain-injured or otherwise disabled child. These children need a great deal of attention and therefore use a great deal of the family's energy. Parents need to realise that the child who returns from hospital can be a very different child from the one who entered the hospital with RS. His or her abilities may be very altered and indeed the child's personality may be changed. The following traits are common following a period in hospital:
- Overdependency, clinging
- Refusing to eat or overeating
- Sleep disturbances
- Bed wetting or soiling
- Regression to earlier levels of behaviour
- Tics
- Depression/anxiety
- Fear of hospitals and medical personnel
- Restlessness
- Uncommunicative states (withdrawal from contact with others)
- Overconcern with the body (hypochondria)
It is very easy for the affected child to become the centre of attention. He or she should be given responsibility equal to ability as soon as possible. Every effort should be made to return to as near as normal family life as soon as possible.
The recovering child can reduce anxiety and fear through play activities and speech depending upon his or her age. At the same time, such play can help the child to gain confidence and security through the control of the play situation. The recovering child can benefit greatly from play therapy which may be available through opportunity play groups and local toy libraries. Listening to the child patiently and lovingly will be very helpful.
As there is a grieving process following the death of a child, so there is also a grieving process for the family of a child who is diagnosed as disabled. The whole family will be involved with the care of the child and discussions about the situation should be open and frank, with all family members participating where possible.
Whatever the reaction, a family with a multiple handicapped child needs support emotionally as well as financially. The family needs to know that there are benefits and services available to help them and what these resources are. The level of service provision for families will be dependent upon where they live and their local resource priorities. Family counselling may be useful but may not be available locally.
Dealing with Disability
Discovering that your child has a special need or disability is probably one of the most devastating experiences that a parent will live through. The feeling of isolation - both physically and emotionally - can often be acute. However, in time it will be found that some of the pain can be relieved by sharing thoughts and fears with other families in a similar situation.
Although brain damage is not reversible, it is true that much progress is possible. Parents must remember that their child has the capacity to grow and change, and that he or she must be given the room to do so. Treatment options should be discussed and when a decision is reached it can hopefully be supported by all members of the family. It is very important that a sense of balance be reached and maintained by the family as soon as possible.
The local authority social services department can play a vital role in assisting the family. The Children Act 1989 gave the local authority the lead for providing services to children with disabilities, but parents will be dealing with the local education and the health authority as well.
Many voluntary organisations also exist to support families in their search for information and service provision.
Benefits & Services Checklist for families caring for a child with disabilities at home
Benefits:-
If you are caring for a child with a disability you may be entitled to benefits. Make sure that you are claiming the help which is your child's right by working through this list.
- Disability Living Allowance
- Care component
- Mobility component
- Invalid Care Allowance (ICA)
- Is linked to receipt of Disability Living Allowance
- Income Support
- if you are on Income Support you may be entitled to:
Carer Premium if you qualify for Invalid Care Allowance
Disabled Child's Premium if you receive Disability Living Allowance for your child
Other free benefits such as travel costs to hospital
- Jobseekers Allowance
- Disabled Persons Tax Credit
- Working Families Tax Credit
- Housing Benefit (rent rebate or rent allowance)
- Council Tax Benefit
- Social Fund
- Benefits after 16
If your child with a disability is aged 16 or older and is unable to earn a wage she or he may be entitled to the following benefits:Severe Disablement Allowance (SDA)
& Incapacity Benefit (IB)
- Fares to hospital for treatment
- Nappies and incontinence aids
- Buggies and wheelchairs
Advice on Benefits
The Benefit Enquiry Line offers free and confidential advice on all Social Security benefits for people with disabilities, their carers and representatives.
Benefit enquiry staff cannot look at your personal records and can only give general information and advice. Tel (0800) 882200, Mon - Fri 8.30am - 6.30pm and Saturday 9am - 1pm.
Those who have a textphone (for people with hearing or speech difficulties) can call the Benefit Enquiry Line free on Tel (0800) 243355.
The Benefits Enquiry Line can help with filling out forms and can then fax them through to your local disability benefits centre. They also have details of local disability centres. The Benefit Enquiry Line also provides a service to people whose first language is not English.
Claiming benefits can seem a complicated process but there are people who can help and give you independent advice - for example, your Citizens Advice Bureau (CAB) welfare rights adviser or advice agency.
Another useful - and independent - source of information and advice is Disability Alliance which produces an all-purpose rights guide for people with disabilities and their families called Disability Rights Handbook. This is updated yearly and by regular Disability Rights Bulletin.
Other sources of help:-
Disabled Facilities Grants, Renovation and Minor Works:
Before starting work on your home to make it more suitable for your disabled child, you should contact the local housing authority to check what help is available. There are a number of different types of grants available but the Disabled Facilities Grant, which helps meet the cost of property adaptations for a disabled person, may be the most relevant. All renovation grants are means-tested. A comprehensive guide is available from:
- The Royal Association for Disability and Rehabilitation (RADAR) tel (020) 7250 3222
- The Family Fund - this is run by the Joseph Rowntree Foundation and is financed by the Government / tel (01904) 621115 (Department of Social Security)(Contact a Family)
Services:-
In England and Wales children with disabilities are now classed as 'children in need' within the terms of the Children Act 1989, and local authorities are under a statutory duty to provide support services to help them minimise the effect of disabilities and to provide the opportunity for them to live as normal a life as possible.
In practice, the services which are available to help children with disabilities and their families vary a great deal throughout Great Britain, but it is certainly worth asking whether any of the services relevant to you and your child listed below are available in your area. If you don't ask, you just miss out on something good!
* Respite care/family link scheme (short term substitute care for your child with disabilities, with another local family or in a local project)
* Crossroads care scheme (day and night sitting services)
* Support groups for parents and carers of children with disabilities
* Counselling for parents/carers of children with disabilities
* Support groups for brothers and sisters of children with disabilities
* Clubs, groups and special social facilities for children with disabilities
* Holidays and play schemes for children with disabilities
* Physiotherapy
* Speech therapy
* Domiciliary care (help for you at home)
* Nappies and incontinence aids
* Laundry service
To find out what is available locally, try contacting:
Your local authority
Your health authority
Your doctor (GP)
The Education Authority
(If your child attends a special school the staff may be especially knowledgeable and helpful)
If a particular service is not available in your area and you believe that it should be, why not contact your MP or councillor and ask them to investigate.
Contact a Family
Contact a Family is a national organisation supporting families with any type of disability. The organisation can be contacted at:-
209-211 City Road
London EC1V 1JN
Tel (020) 7608 8700
Fax (020) 7608 8701
Minicom (020) 7608 8702
Helpline 0808 808 3555 freephone for parents & families
(10am - 4pm Mon - Fri)
e-mail info@cafamily.org.uk
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