Income and disability

6.1 If their earning capacity is seriously reduced and they also have to meet the extra costs associated with their condition, people with disabilities are at serious risk of living in poverty. Research carried out by the ESRI shows that households headed by people who are unable to work due to illness or disability are one of the groups in Irish society most likely to live in poverty and to experience basic deprivation.

6.2 As noted already in this report, the absence of detailed statistics about people with disabilities impedes the making of policy. This is particularly true in relation to their incomes and the Commission recommends that further research be carried out into this area. At present we are forced to rely on data which does not correspond to any widely accepted definition of disability.

6.3 Based on data from a 1987 ESRI survey, it is clear that households headed by people who were ill were subject to a higher than average risk of falling under a poverty line as Table 1 shows.

TABLE 1 RISK OF POVERTY BY LABOUR FORCE STATUS OF HEAD OF HOUSEHOLD
40% line50% line60% line

Labour Force Status

III but intending to seek work

III and not seeking work

All households

% in SamplePoverty Lines

1.2

4.8

100

30.6

7.3

7.5

51.2

25.0

17.5

65.3

63

30

Source:Callan et al. Poverty, Income and Welfare in Ireland, ESRI, 1989

6.4 At the 60% line almost two thirds of all households headed by a person with an illness were below the relative poverty line as compared with 30% of the population as a whole. The ESRI survey found that these households were in the highest risk groups with households headed by an unemployed person or a farmer. These figures only relate to households where the head is ill and do not include households where another member of the household is ill.

These figures broadly correspond with a recently published survey conducted by the Irish Wheelchair Association. Of a sample of 1,000 members of the IWA, 53.5% replied that they had some or a lot of difficulty in managing on their income (14% of the sample did not reply to this question).

In more recent work, Callan, Nolan and Whelan have developed their study of poverty to include a consideration of living standards. Their study showed that, of those households which were below the 60% line and were experiencing "basic deprivation" in terms of their standard of living, 17% were headed by a person who was ill or disabled. Based on this criterion, 42% of households headed by a person who was ill or disabled were living in poverty (compared to 16% of all households). This was a comparatively high proportion topped only by households with an unemployed head (51%).

6.5 Further research needs to be carried out into the income support, both public and private, provided to people with disabilities. Little is currently known about the personal circumstances of those who are in receipt of social welfare payments and there is very limited information available about sources of private income support (e.g. The numbers in receipt of pensions on retirement due to ill health, numbers insured under or in receipt of payments from permanent health insurance). Nor has there been any assessment of existing payments to establish the degree to which payments reflect needs. All these issues need to be addressed in order to establish a comprehensive system of income support.

6.6 However, the Commission would not like to see lack of research being used as an excuse to delay essential reforms. The recommendations which are set out in this chapter are based on the personal and professional experience of the members of the Commission, on existing research and studies and, perhaps most importantly, on several hundred submissions from people with disabilities themselves which clearly indicate the need for urgent reform.

6.7 People with disabilities need income support and assistance, with costs relating to their disability for two reasons. Firstly, many of them are not in employment and, therefore, do not have an income from work. Secondly, disability gives rise to extra costs in areas such as equipment, care, travel, telephone, fuel, food, clothing and laundry, hospital and medical expenses, home treatment (e.g. Physiotherapy) and home services (e.g. Home help). These two needs raise distinct issues and the Commission has addressed them separately.

6.8 On the basis of the available research and of the submissions made to the Commission, we believe that income support for people with disabilities is currently highly inadequate. The provision of adequate income support is essential, both to ensure that people with disabilities do not live in poverty and to allow them to participate fully in society.

At national level, there is no coherent policy of income support for people with disabilities. There is no unified system: income support is fragmented and lacking in co-ordination.

Income support payments are currently administered either by the Department of Social Welfare or by the Department of Health, through the regional health boards. They are accompanied by a bewildering array of free schemes and grants and allowances aimed at augmenting income or addressing specific problems faced by people with disabilities, such as mobility difficulties. They have developed in a piecemeal fashion over time, and the system of payments is neither coherent nor comprehensive. In addition, the division of responsibilities between the two departments owes more to historical accident than to rational planning.

6.9 Existing payments are related either to income or to costs. They can be broadly categorised into eight groups:

  • Disability benefit and invalidity pension. These are contributory payments (i.e. based on payment of social insurance contributions) administered by the Department of Social Welfare. Disability benefit applies to people whose employment has been interrupted due to short or long term illness: invalidity pension is paid as a result of a long term disability.
  • Occupational injuries benefits. Also administered by the Department of Social Welfare, these payments are for employees who have suffered injury from an occupational accident or disease arising from their work.
  • Blind Pensions. Administered by the Department of Social Welfare, this includes a means tested payment to persons aged 18 or over who are so blind that he or she cannot perform any work for which eyesight is essential or cannot continue his or her ordinary occupation. There is also a blind welfare allowance administered by the Department of Health. This is a weekly means tested payment whose statutory basis is unclear. It may be paid to a person who is already receiving the blind pension or the disabled persons maintenance allowance.
  • Department of Health payments. These include the rehabilitation allowance, infectious diseases maintenance allowance, blind welfare allowance, mobility allowance for people unable to walk and motorised transport grant and also include the Disabled Persons Maintenance Allowance until its transfer to the Department of Social Welfare on 2nd October, 1996.
  • Payments to carers. There are two main payments in respect of caring: the means tested carers' allowance administered by the Department of Social Welfare and the domiciliary care allowance, a payment in respect of children with disabilities who require constant care, administered by the Department of Health.
  • Free Schemes. These schemes include "free" travel, electricity, gas, TV licence, phone, fuel, butter vouchers and come under the Department of Social Welfare. They are not confined to people with disabilities.
  • Supplementary Welfare Allowance. This is also a general social welfare scheme and is not aimed specifically at people with disabilities. It includes weekly additional payments in respect of housing, diet and exceptional heating costs and once off payments in respect of exceptional needs.
  • Income tax allowances and tax concessions. In addition to these provisions provided by the State a person with a disability may receive support from a former employer (occupational pension); a private insurance company (permanent health or critical illness insurance); or the legal system (compensation).

6.10 The Commission has identified several serious weaknesses in the current provision of income support:

  • The level of allowances do not make provision for the costs of disability, which can be very high for many people.
  • Information on entitlements and regulations is poor.
  • Each allowance and scheme has a separate set of assessment processes, and people with disabilities are faced with a bewildering array of forms and examinations. The medical model of assessment is a serious problem.
  • Health boards differ widely in their application of eligibility and means testing criteria.
  • The absence of an appeals system in relation to allowances and schemes operated through health boards.
  • The withdrawal of allowances when people spend time in hospital creates hardship.
  • The non-payment of allowances to people in residential care, which creates unacceptable levels of dependency.
  • The disincentive to participate in education, training or work which arises because of the lack of flexibility in the income support systems for people with disabilities.

6.11 To address these deficiencies, a comprehensive system of income support for people with disabilities should be established which would apply national standards to payments. A person with a disability must have a right to the disability payment once they meet the qualification conditions. The system must be flexible and capable of being tailored to meet the needs of the individual.

6.12 There is a need to establish two types of payments:

  • A payment to compensate for loss of income due to an incapacity for fulltime work, or to work to full potential, to be called a "Disability Pension".
  • A graduated payment to meet the additional everyday costs associated with disability. This payment would be irrespective of whether the person with a disability is at work or not. It should be called the "Costs of Disability Payment".

6.13 At present, the three main payments in the income support area are the contributory invalidity pension, the means-tested blind pension both administered by the Department of Social Welfare and the means-tested Disabled Persons Maintenance Allowance (DPMA) which was administered by the Health Boards up to 2nd October, 1996. From that date, responsibility for the scheme was transferred to the Department of Social Welfare and the scheme has been re-named Disability Allowance. Whilst the Commission welcomes the transfer of this scheme to the agency responsible for mainstream income maintenance payments, the system of payments for people affected by long-term incapacity for work remain unnecessarily complex.

6.14 The current disability benefit payment relates generally to illness rather than disability: it should be renamed "Sickness Benefit". As it relates to the total labour force and not just people with disabilities, this payment is outside the scope of this report. However, an enquiry needs to be carried out to see if any people with disabilities are included for two years or more. If so, they should be given the choice of transferring to the new Disability Pension.

6.15 The principal of "rights not charity" requires that all disability payments should be provided for in legislation which makes clear that there is a legal right to payment.

Disability Pension

6.16 The Commission recommends that a unified scheme called the Disability Pension should be established to provide support for people with disabilities who are incapable of full-time work in the long term due to disability. The Disability Pension would be administered by the Department of Social Welfare and would replace the three main existing schemes.

6.17 The Disability Pension should be a pension payable to all people with disabilities, including those who live full-time or part-time in residential settings, who meet the qualifying conditions. This payment would be a step towards achieving equal citizenship for all people with disabilities.

6.18 The disability pension should not be means-tested, as the qualifying conditions can protect against misuse.

6.19 The disability pension should be a weekly pension. The initial rate of payment should be the same as the current rate for invalidity pension, including payments for dependants. The rates of payment recommended by the Commission on Social Welfare should be achieved as a matter of priority in relation to all income replacement payments.

6.20 Incentives to undertake employment should be openly available to persons in receipt of disability pension taking particular account of the extent to which a person is allowed work without losing entitlement and the extent to which the pension is reduced on the basis of such income.

6.21 Qualifying Conditions:

A person must be aged 16 to 66 with a disability or illness resulting in their not being able to undertake work which would otherwise be suitable for a person of their age, experience and qualifications. They must have either a minimum number of PRSI contributions and medical certification or, in the absence of these contributions, medical certification that they have been substantially disabled and are likely to be permanently incapacitated.

Additional Costs Of Disability

6.22 Disability gives rise to extra costs. The National Rehabilitation Board has carried out an illustrative survey of 30 people with disabilities in urban areas and is currently carrying out a further survey on 30 people in a rural area. Initial results indicate that most participants had additional disability related costs. These included general living costs, food, heating, clothes, laundry services, equipment, aids and furniture and adaptations to their homes. While the small numbers involved mean that the case studies cannot be used to estimate average additional income needs for all people with disabilities, they do clearly indicate that people with disabilities have significant additional costs associated with their disability.

6.23 At present, there is no comprehensive payment to meet these significant extra costs faced by people with disabilities. There are, however, a range of payments and benefits-in-kind which, in practice, go some way towards meeting these costs. These benefits are not comprehensive and in many cases are paid on a discretionary basis.

6.24 The additional costs of disability can be classified according to area of needs as follows:

  • Equipment
  • Mobility and Communication (travel and telephone)
  • Living Costs (fuel, food, clothing etc.)
  • Medical
  • Care and Assistance (including personal assistants)

6.25 On the basis of the aforementioned surveys and the available information, the State should, as a matter of principle, acknowledge its role of supporting people with disabilities and their families in meeting the additional costs arising from disability.

6.26 We recommend that the Department of Health and Social Services introduce a variable Costs of Disability Payment where services are not or cannot be provided. This payment should be available to all people with disabilities irrespective of their age and employment status. This payment should not be taxable.

6.27 We recommend the implementation of a nationwide assessment procedure based on needs, and the establishment of an independent appeal system in relation to such assessments.

6.28 To facilitate the above, a system to co-ordinate the mix of services and payments at an appropriate level is required. This co-ordination role would involve assessing needs and co-ordinating the provision of payments and services - as outlined in Chapter 4 of this report.

6.29 Where possible, existing schemes should be used to meet the additional needs of disability. There is at least one existing scheme in each area of need identified above. These could be built upon, thereby reducing the overall cost of the new payment. Only where this is not possible should there be eligibility for a Costs of Disability Payment.

6.30 In addition to the above two payments mentioned, a separate payments system for carers is required.

Payments For Carers

6.31 There are two main payments to carers at present. The domiciliary care allowance is paid in respect of the care of children between the ages of 2 and 16 with severe disabilities: it is administered by the Health Boards on behalf of the Department of Health. The carers' allowance is an income replacement payment for carers administered by the Department of Social Welfare. There are also a range of tax allowances which are broadly in the area of caring for a person with a disability. These include the "incapacitated child allowance", the "dependent relative allowance", the "blind person's allowance" and the "allowance for the care of an incapacitated individual".

6.32 We recommend that the existing domiciliary care allowance should continue but its administration should be transferred to the Department of Social Welfare.

6.33 The carers' allowance, however, needs major overhaul. A large majority of carers are women but the restrictive nature of the present criteria means that many carers do not qualify for the allowance. This results in exploitation of many carers and is a major issue which needs to be addressed by the state immediately. The definition of "carer" is too restrictive and should be reviewed.

6.34 We recommend the payment of a Carers Allowance to all carers. Where appropriate, the person being cared for should be consulted about the decision to grant or terminate a payment.

6.35 Qualifying Conditions:

Persons caring for all people who require full-time care and attention should be eligible for this payment.

Where a person qualifies for the domiciliary care allowance, he or she will automatically qualify for the carer's allowance when the individual being cared for reaches age 16 unless they go into a full-time residential setting.

Carers of a person in a five day residential setting should also be paid on a pro-rata basis, i.e. Weekend or holiday payment.

Persons caring for more than one person with a disability should receive a pro-rata payment, i.e. Double, treble etc.

The carer should not be disqualified if he or she is engaged in any additional work outside their home. A certain amount of earnings should be disregarded for the purpose of the means test.

In some other EU countries (e.g. France), carers are awarded fully-paid contributions which entitle them to social welfare benefits with the cost being met by the State. This approach should be followed in this country.

6.36 The rates of payment recommended by the Commission on Social Welfare should be achieved as a matter of priority in relation to all income replacement payments.

6.37 Subject to the introduction of this new carers allowance the existing tax allowances should be phased out for new claimants. The costs of these allowances should be put towards the cost of the new payment.

6.38 The means test should be related to the carer's means only and should not include that of his/her spouse or partner.

6.39 This payment should not be taxable.

National Anti-Poverty Strategy

6.40 The Commission notes that the Government is currently engaged in a consultative process towards establishing a National Anti-Poverty Strategy. The Commission welcomes this initiative and recommends that specific regard be given within any Anti-Poverty Strategy to combating the disproportionate impact of poverty on people with disabilities.