Feature

posted 1 Nov 1997 in Volume 3 Issue 1

Availability of Benefits and Access to Funding for Family Carers

This is the second part of an article from Amanda King-Jones (See Volume 2, Issue 6 for part 1).

In this issue Amanda summarises a number of different areas of law relating to benefits, funding and welfare rights of private Carers.

She looks at the position from the prospective of the carer, in contrast to the elderly client, who is so often the focus of attention and advice.

Attendance Allowance and Disability Living Allowance

These benefits relate to the practical effects of an illness or disability. They are tax free and do not depend on national insurance contributions. Payment is not affected by the person's savings nor usually by their income. These benefits can be claimed whether the person lives alone, with their family or with other people. The allowance is payable to the person requiring care NOT the Carer.

People whose needs develop after the age of 65 should claim attendance allowance. People whose needs start before they are 65 should claim the disability living allowance, providing they make their first claim before their 66th birthday. These allowances are paid at different rates depending on the person's needs.

Care and supervision needs.

The attendance allowance and the disability living allowance care component can be claimed by people who need help with personal care or need supervision to avoid danger. Care needs include help with activities such as washing, dressing, eating, toileting and taking medication. Supervision needs include any watching over that is necessary to avoid certain risks inside or outside the home.

Mobility needs.

The disability living allowance mobility component can be claimed by people with walking difficulties which develop by their 65th birthday but once awarded it is payable for life. It is paid at two rates. (Higher rate - £34.60 per week; Lower rate £13.15 per week).

* Someone with dementia may qualify for the higher rate if they are unable to walk due to paralysis or weakness or their walking is severely limited, for example, by pain, stiffness or discomfort.

* They may qualify for the lower rate on the grounds that, although they are able to walk, they are likely to get lost or need guidance in getting from one place to another in a strange area.

Rates of allowances.

* A person will qualify for the top rates of attendance allowance (£49.50 per week) or disability living allowance care component (£49.50) if they need frequent help with personal care or continual supervision to avoid danger during the day and either help with personal care or supervision for a prolonged period or several times during the night.

* They will qualify for the lower rate of attendance allowance (£33.10 per week) or the middle rate of disability living allowance care component (£33.10 per week) if they need frequent help with personal care or supervision either during the day or the night.

* To qualify for the lowest disability living allowance care component (£13.15 per week) the person has to show that they need help with personal care for some of the day.

Loss of Benefits

This may be a substantial problem for the Carer, who may be depending on these sources of income from the person they are looking after.

* Retirement pension, income support, incapacity benefit and severe disablement allowance are generally reduced after stays of six weeks in a hospital. How much they are reduced by depends on individual circumstances.

* Housing benefit and council tax benefit may be affected, depending on the situation.

* Attendance allowance and disability living allowance care component are usually suspended after a continuous 28 days in hospital. Full payment will resume once the person has been discharged.

* Invalid care allowance may be affected if either the carer or the person they are caring for goes into hospital.

Invalid Care Allowance

This benefit is paid to the Carer. About 280,000 Carers receive Invalid Care Allowance (ICA) (£37.35 per week).

The rules are that:-

i. The carer must be aged at least 16 and under 65.

ii. The person cared for must be in receipt of Attendance Allowance, constant Attendance Allowance or Disability Living Allowance care component at middle or higher rate.

iii. The carer must be caring for at least 35 hours a week (a week running from Sunday to Saturday). The 35 hour rule can easily be met if the carer only cares at weekends especially as s/he can count periods spent preparing for the person's arrival and clearing up afterwards. ICA can be paid during temporary breaks in caring, up to four weeks in any six month period.

iv. The carer cannot be gainfully employed. This means that her/his own earnings must be under £50 a week after expenses. Expenses include national insurance, fares to work, childminding costs and the costs of alternative care for a member of the household while the carer is working. People with fairly high earnings can still qualify because the expenses rules are fairly generous. Earnings are ignored while the carer is on leave with the permission of the employer. For example, if a carer is on compassionate leave with full pay, s/he may still qualify. Earnings are also ignored during temporary breaks in care.

v. The carer must not be in full time education. This is defined as 21 hours a week or more supervised study so that many people on "full time" courses can still qualify, for example, young people doing A levels.

vi. The carer must be ordinarily resident and present in Great Britain but does not have to be related to or living with the person they provide care for.

vii. The allowance may not be payable if the Carer or their spouse receives a state benefit or pension.

Other points to note:-:

* ICA can be backdated for up to a year.

* Entitlement to ICA will lead to the award of the carer premium if the Carer is claiming other benefits, such as Income Support, Housing or Council Tax Benefit.

* For each week on ICA, the carer is credited with a Class 1 National Insurance contribution. This helps protect pension rights. However, the benefit is taxable.

Income Support

Income Support may be available if savings do not exceed £8,000 and there is a low income. The benefit is made up of a personal allowance, plus a premium. There are six premiums which apply to the elderly disabled or to Carers.

For the Carer

The Carer premium (£13.35 per week).

For the elderly person

Pensioner premium

Enhanced pensioner premium

Disability premium (disabled and if under 60)

Higher pensioner premium (disabled and aged 60-79)

Severe disability premium.

Council Tax

Advisers to Carers should consider:-

(i) Whether the Carer's property is exempt, for example where the home is unoccupied because the Carer has gone to live with someone else, to provide personal care, because they are elderly, ill or disabled.

(ii) If the relative has moved into the Carer's property, are they in a separate unit of accommodation, e.g. a granny annexe. This may be assessed as a separate dwelling (or, if unoccupied, it may be exempt).

(iii) If the Carer's home has been adapted for someone with a disability, the Band assessment may be reduced.

(iv) Discounts - a person may not be "counted" as an occupier if they are severely mentally impaired (usually when receiving Attendance Allowance/Severe Disability Allowance). If that leaves "one occupier" there may be a normal 25% discount.

(v) Discounts - a Carer, may not be "counted" if they are spending at least 35 hours a week caring for someone who lives in the same household (subject to conditions).

(vi) Main Council Tax benefit, e.g. if a Carer is living with an elderly relative or Income Support or equivalent low income, it may be possible to obtain a rebate.

(vii) If any discounts are applicable these could be backdated to April 1993, when Council Tax was introduced.

Home Repair Assistance or Disabled Facility Grants

If an elderly relative moves in, consider whether these are available. The size of the grant depends on the applicant's income and savings.

Community Care (Direct Payments Act 1996

The purpose of this Act, which came into effect on 1st April 1997, is to give power to Local Authorities to give cash, rather than to just supply services. Persons qualifying for this type of payment are to be defined in the Regulations affecting the Act but it is anticipated that disabled people not over 65 years of age will be eligible. The recipients of these payments will be able to use cash to pay for any such Community Care services the Local Authority deem to be necessary for them. The individual has to consent to the Local Authority making payments direct to him, rather than providing services.

The Carers (Recognition and Services) Act 1995

The intention of this Act, which came into effect on 1st April 1996, is to give individuals who provide, or who intend to provide, care on a regular and substantial basis a legal right to request and to have an assessment of their needs carried out by local authorities, and to enable those local authorities to provide support and services for those carers. Section 1 provides that where a person's needs for community care services, or a disabled child's needs for welfare or other services, are being assessed by a local authority, that person's or child's carer, or potential carer, may request the authority to assess his caring ability and to take that assessment into account in deciding whether the needs of the relevant person or child call for the provision of any services.

The Act does define what is meant by a carer and Sections 1(1)(b) and 1(2)(b) give the definition of a carer as someone who "provides or intends to provide a substantial amount of care on a regular basis for the relevant person". Section 1(3) provides for the exclusion of people who either provide or will provide the care because they are under contract of employment to do so, or because they are volunteers working for a voluntary organisation.

Main Provisions of the Act

* There is a duty on the assessor to consider the Carer's arrangements and to take into account the ability of the Carer to provide the level of service required.

* Carers have the right to a separate community care assessment but only if they request it.

* It only applies to carers who provide, or intend to provide, substantial care on a regular basis.

* Assessment applies to carers of any age.

* Any resultant community care services will be deemed to be services provided to the disabled person, so carers will not be charged for them.

Physical Welfare Implications
Written Consent

It is common practice for hospitals to ask relatives to sign giving consent to major interventions such as surgery where the patient is not mentally competent. Increasingly, they seek the consent of the Carer.

There is, in fact, (save for parents' consent if a child is under 16) no legal basis for a Carer to give such consent. The remit of the Court of Protection does not extend to medical decisions, nor does an Attorney's power under an Enduring Power of Attorney.

There may be possible advantages to Carers if an elderly person has signed an Advance Directive or Living Will, so that difficult decisions as to health are duly recorded in advance. Family carers may well be those ultimately having to make treatment choices.

Guardianship

The Mental Health Act 1983 recognises and gives powers to the "nearest relative" of the patient to make application for compulsory admission of the patient (temporary or long-term) and the right to seek their release. Admission must be supported by 2 doctors and discharge subject to the approval of a responsible Medical Officer.

The Mental Health Act 1983 s. 8 offers a limited form of adult guardianship and a member of the family may be appointed. The guardian only has the right to require the patient to live in a specified place and to attend at specified times and places for the purpose of medical treatment, occupation, education or training and also to provide access to the patient by the social worker, doctor or other specified person. There is no power to compel the patient to have such treatment, nor can the guardian consent to treatment on the patient's behalf. There is no power over the property of the patient. A private guardian has various duties which relate to notification of the local authority and the appointment of a medical practitioner. It lasts for six months but is renewable.

Right of Consultation

Carers do not have any legal right to be consulted by Social Workers or to obtain information and details from the medical profession. However, s.50 of the National Health Service and Community Care Act 1990 does allow Carers to make complaints on behalf of service users. In addition, the Complaints Procedure Directions 1990 provide that a Carer making a complaint has the same rights as the service user to make representations, to receive information and have notification of the recommendations made under the Community Care Act 1990.

Financial Welfare Implications

There may be considerable financial consequences for a Carer, which can encompass loss of earnings, considerable additional expenditure for extras, for example heating, laundry, clothing, bedding, toiletries, unprescribed medicines, special dietary requirements, transportation. It is essential that family Carers are aware of the legal authority for seeking financial allowances or reimbursement. These can be briefly summarized as follows:-

(i) Agency - Social Security benefits can be withdrawn by another person but only with written consent of the Claimant.

(ii) Appointeeship - Where a claimant is unable to act, the Social Benefits Agency can appoint someone to make claims for and to receive benefits and to spend them on behalf of the claimant.

(iii) Third Party Mandate - The person giving it must be and continue to be mentally capable. In general it authorises someone to draw from a Bank or Building Society account.

(iv) Receivership - Authority is given by the Court of Protection to a Receiver to use income and capital for the maintenance of the patient.

(v) Enduring Power of Attorney Act 1985 - Section 3 -

An Attorney's power under s.3(4) to benefit others (other than on normal employment terms) and make gifts is limited. S.3(4) states that an Attorney may act to benefit either themselves or persons other than the donor only to the extent that the donor might have been expected to provide for the needs of that person and the Attorney might do whatever the donor might have been expected to do to meet those needs. S.3(5) limits the capacity to make gifts to those of a seasonal nature to persons who are related or connected with the donor. These restrictions may place difficulties on either an Attorney making "ex gratia" provision for a family carer and more so if the Attorney is also the carer. If such circumstances are envisaged (and this is also difficult to know) it may be appropriate to include an express authority in an Enduring Power of Attorney for payments to be made to a "family" carer outside the scope allowed for by the Act. If not, the only alternative may be to apply to the Court for authorization to make larger gifts under s.8(2).

Respite care

The local authority may arrange such care under section 21 of National Assistance Act 1948.

Short breaks in residential care (up to 8 weeks) may attract a charge. The local authority has discretion whether or not to apply the statutory means test. The legislation makes it clear that the person to be charged is the resident, not the carer. However, some local authorities do try to assess the resources of the carer when determining a charge for respite care.

Pensions

The home responsibilities protection (HRP) helps to protect the pension rights of someone caring for a sick or disabled person for at least 35 hours a week who is in receipt of Attendance Allowance or the middle or higher level e.g. the care component of the Disability Living Allowance. (If Invalid Care Allowance is received automatic credits will be given to the pension). The HRP reduces the number of qualifying years needed for a full pension. A claim must be made for the protection to be given.

Long-term Care Insurance

This may help to relieve the pressure placed on carers. The premiums can be paid by anyone and potential "future" carers may give more than a passing glance to the option of paying premiums to protect the future care by others, particularly in light of reluctance of Local Authorities to assist with funding requirements.

N.H.S. v. Community Care

There is a difference between "health care" and "community care". The National Health services are free - community care is not. There may be a contribution towards the "health care" element. Long term health needs should be funded by the N.H.S. Carers should be made aware of the obligations of the National Health Service. There may be instances where they are providing a service which in fact should be provided, free of charge, by the N.H.S.

Such eligibility criteria include:-

(1) complex medical needs

(2) frequent and not easily predicable interventions to treat and or maintain the condition

(3) the need to routinely use specialist health care equipment or procedures requiring supervision of specialist N.H.S. staff

(4) the need for acute treatment or care which is such that the person is likely to die within a four week period.

Checklist on Advising the Family as Carers

1. Check that all benefits are claimed for financial support, both for the person requiring care as well as the carer. Comprehensive details may be obtained by registering with the Benefits Agency Publicity Register, which issues an annual list of all their current leaflets and copies can then be obtained.

2. Make an early application for financial support. In most cases benefits are only payable from the time of application.

3. Ensure that appropriate legal authorities are obtained in advance, to enable financial support to be continued or given.

4. Ensure that all documentation is prepared to record/secure property rights.

5. Advise on Inheritance "rights", or lack of.

6. Status - register the Carer with appropriate bodies to ensure recognition.

7. Insurance cover (long term care) - consider the possibility of a future potential carer paying the premiums.

8. Review all available provision of services under NHS/Social Services/Community Care.

9. Advise on welfare/medical position - "physical" rights - and Living Wills.

10. Have available lists of other assistance and support - charitable/local and national organisations.

Practical help for Carers and their Advisers may be obtained from:-

Carers National Association,
20-25 Glasshouse Yard,
London, EC1A 4JS.
Tel: 0171-490-8818.

Carers Line - weekdays - 1-4 p.m. - 0171-490-8898

Crossroads.
10 Regent Place,
Rugby,
Warwickshire, CV21 2PN.

Help the Aged - 01788-573653.

Age Concern - 0181-679-8000

Alzheimer's Disease Society,
Gordon House,
10 Greencoat Place,
London, SW1P 1PH.
Tel: 0171-306-0606.

Amanda King-Jones, Thomas Eggar Verrall Bowles