The Leeds Method of Management. April, 2008. Social worker [online]. Leeds Regional Adult and Paediatric Cystic Fibrosis Units, St James's University Hospital, Leeds, UK. Available from http://www.cysticfibrosismedicine.com
Social workers in the CF team have an important role to play in helping patients and their families cope more effectively with the inevitable stress of having a chronic illness, by offering emotional support, counselling, practical help and advice. Referrals for social work assessments come from a variety of sources, usually health professionals, parents or patients themselves. At the time of referral a social assessment is done to assess the patient’s needs, and provide services where possible. These services include:
assessment and support after referral for transplantation
The role of the social worker is particularly valuable during times of crisis because we can visit people at home. This helps us build a holistic picture of the patient’s life and what support networks are available and any other areas of difficulty for the family. Social workers have a vital role in helping with relationship difficulties and preventing isolation. We have access to various charities that will provide help with holidays and with buying some household appliances, and with the expense of inpatient hospital treatment. Contact can also be made with the patient’s local social services department so that local services can be accessed.
Discussion with social workers is strictly confidential and would not be shared with others without permission from the individual or their families. However, social workers have a responsibility to protect patients from harm and are statutorily bound to disclose information about people they believe to be ‘at risk.’ They also have a statutory duty to investigate the need for child protection whenever there is a concern.
Social workers have a working knowledge of the system of benefits/allowances. Caring for a person with CF can involve considerable expense and it is difficult for people on a low income. The following pages give a brief outline of the charities and organisations that may be able to help and what benefits may be claimed. Please bear in mind that the benefit system is extremely complex and it is recommended that you seek advice from your social worker/welfare rights worker with regard to your own individual situation.
The Cystic Fibrosis Trust
The CF Trust provides patients and families with knowledge specific to CF. The website (www.cftrust org.uk) provides a range of useful information that includes articles, information about medical research as well as information about living with CF and publications that are useful and informative. The website provides an opportunity for patients and their families to meet on line and share their own experiences. The CF Trust offers financial assistance in the form of welfare grants to those who may be experiencing financial difficulty in times of crisis, helps with essential items when a person may be called for transplant, and offers holidays and respite funds.
Useful contact numbers include
Cystic Fibrosis Trust helpline 0845 859 1000.
Benefit Advice helpline 0845 859 1010
Welfare Grants helpline 0845 859 1020.
Family Key Worker Project
The Family Key Worker project is a Leeds based project. This aims to provide support and practical help for families with children who have multiple disabilities and complex health needs. A worker is allocated to the child and family and supports and advises families about accessing services for their child in their local area. Anyone can be referred for help. For further information about whether your child meets the eligibility criteria, or for general advice, please contact the project directly on 0113 206 3226.
Telephone: O208 940
DIAL is a national
based organisation that provides a whole range of information and advice
about services for disabled people.
The Family Fund is a registered charity that covers the whole of the UK. It aims to provide grants to families with disabled children. Family Fund advisors meet families in their own homes to make an assessment of their individual needs. The fund operates criteria to determine whether a family or individual is eligible for help.
To be eligible for a grant income must be less than £23,000 gross (excluding DLA). The Fund can help with holidays, driving lessons, travel expenses, bedding and washing machines. The Fund will also consider awarding a family a grant when essential refurbishment and decoration has been undertaken after adaptations to the home.
For more information please contact 0845 130 4542
Dream Holidays is a charity which provides respite holidays for children with CF and their families. Referrals can be made through various health professionals. If you require more information please speak to your social worker directly or refer to the charity website,
or contact them on 0198 385 7754.
The following information is a guide to the benefits which people with CF may be entitled to depending on their individual circumstances, such as employment status, national insurance contributions paid, dependents, capital, income and medical condition.
Disability Living Allowance
Disability Living Allowance or DLA is a non-means tested, tax free benefit, payable on top of earnings and other income including benefits. DLA is made up of two components, care and mobility.
The care component is paid at three rates:
• Lower rate £17.10 per week
• Middle rate £43.15 per week
• Higher rate £64.50 per week
To qualify for the care component a patient must need care, supervision, or watching over from another person because of his/her disabilities. For children it needs to be proven that the child needs significantly more care/attention than a child of the same age.
To be eligible for lower rate care a person must require help with bodily functions for a significant portion of the day (approximately an hour).
To be eligible for middle rate care a person must need frequent help with bodily functions during the day, or continual supervision during the day, to avoid substantial danger to themselves or others, or prolonged or repeated attention at night in connection with bodily functions, or someone to be awake during the night for a prolonged period or at frequent intervals in order to avoid substantial danger to themselves or others.
To be eligible for higher rate care it needs to be proven that a person satisfies both the daytime and night-time conditions listed above.
The following examples should be included on the form:
The mobility component is paid at two rates:
• Lower rate
£17.10 per week
The mobility component is paid for those who may require help with getting around. To qualify for the higher rate mobility allowance patients must be suffering from a physical disablement and be either:
1) Unable to walk
Some people with CF fall under the category of being virtually unable to walk. The person must experience severe discomfort that can include chest pain or severe breathlessness.
There is no lower age limit for the care component, but a lower age limit of three years for the mobility component. There is a qualifying period of three months for both components and the patient must be likely to require help for at least six months. Being in receipt of DLA is important as it acts as a gateway to other benefits. Each rate has a separate qualifying test and at the age of sixteen patients claim DLA in their own right.
For any queries regarding
DLA call the helpline on 0845 712 3456, or the benefit enquiry line on
Income support can be claimed on its own or as a ‘top up’. It is means tested and people who claim this must be incapable of work due to sickness or disability. It is also available for students, but legislation is complex, premiums are payable in addition to income support for people in receipt of DLA.
Disability Premium - £25.25 per week for a single person and £36.00 per week for a couple
Severe Disability Premium
The applicant must receive the DLA middle or higher rate care component, and be living alone - £48.45 per week.
Parents in receipt of income support and in receipt of the carers allowance receive £27.15 per week.
You must spend 35 hours a week caring for a person who receives the DLA care component at the middle or higher rate. You must be aged over sixteen and must not earn more than £84 per week once allowable expenses are deducted. The carer’s allowance is paid at a rate of £48.55 per week.
Child Tax Credit
You may be eligible to claim child tax credit if you are responsible for a child under sixteen who lives with you. Your income must be within a set limit. Child tax credit is made up of a number of elements (family element, family element - baby, child element).
Disabled Child Element is included when any child is in receipt of either element of DLA at any rate - £2440 per annum.
Severely Disabled Child Element is included when any child is in receipt of the DLA highest rate care component - £980 per annum.
Tax Credit Helpline: 0845 300 3900
Statutory Sick Pay
Statutory sick pay is paid to employees who are not able to work because of sickness. Your employer pays statutory sick pay for a maximum of twenty-eight weeks. Statutory sick pay is not paid for specific illness or treatment but to all employees who are incapable of work and satisfy conditions for payment. In order to be eligible for statutory sick pay you must be sick for at least four or more days in a row (including weekends and bank holidays). You must earn an average of £84 per week before tax and insurance. This is known as the lower earnings limit.
If you are suffering from short or long term illness, you may be eligible to receive incapacity benefit. Incapacity benefit is not means tested and depends on what National Insurance contributions you have paid. This does not apply if you are incapable of work before age 20, or 25 in some cases. You must be unable to work because of disability or ill health and not eligible to claim statutory sick pay or your statutory sick pay must have ended. Incapacity benefit is paid in three different weekly rates.
Housing Benefit and Council Tax Benefit
Assessments to determine whether a person is eligible for housing benefit and council tax benefit are made at the same time. The benefits are paid to those on a low income, who may require help to meet the cost of their rent and council tax. The amount of help you will receive will depend on the following:
• Personal and
Other factors that will be considered include your age, the size of your family and their ages, whether anyone in the family is disabled and whether anyone who lives with you could help towards the cost of the rent. Your local council will also consider whether the amount of rent is reasonable for your home, whether the property is a reasonable size for the family and whether the rent is reasonable for the area where you live.
Working Tax Credit
Working tax credit is a benefit for people aged 16 years or over who are on a low income, who work 16 or more hours per week and have a mental or physical disability that puts them at a disadvantage in getting a job, or are aged 25 years or over and work at least 30 hours per week.
Income must be within a set limit. Working Tax Credit is made up of a number of elements:
• Basic element
Prescription Pre-Payment Certificate (PPC)
Patients with CF have to pay for all their prescriptions unless they develop diabetes. They may also be exempt if they receive income support or are in higher education, are too ill to work or on a low income. Patients with CF may find that it helps to have a prescription prepayment certificate. People who have to pay for more than five prescription items in four months or 14 items in 12 months could save money.
The CF Trust may help pay towards the cost of a pre-payment certificate if a person is applying for the first time and their salary is low. Your social worker will be able to advise about applying for a welfare grant to cover the cost of this.
There is also a low income scheme. To find out more contact the health benefit division on 0191 2035555 or ask for a HC11 form from your job centre plus, post office, local hospital, dentist or optician.
Crisis loans are interest free loans that must be paid back. You do not have to be claiming benefits to apply for a crisis loan and they aim to offer financial support to people in an emergency. In order to be able to apply for a crisis loan you must be aged 16 or over. You must be unable to pay for basic living costs so that there is a serious risk to the health and safety of you/your family.
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