The Hidden Costs Of Disability.

In Blog by Sinead O’Donnell2 Comments

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With Budget 2014 upon us what better time to lift the lid on the plight of the more marginalised sectors of Irish society. Sinead O’Donnell steps up armed with the stats and looks at the shameful levels of state support for people with disabilities.

Disabled people are twice as likely to live below the poverty line, experiencing high levels of consistent poverty (11% compared to 2% of those at work). According to the 2013 CSO Survey on Income and Living Conditions, families where the head of the household was not at work due to illness or disability had the lowest average annual disposable income in 2011, €22,089 compared to €54,053 for those at work.

The survey outlined several realities about how  living with a disability can affect your standard of living in Ireland.

Disability allowance stands at a flat rate of €188 per week for an adult with disabilities irrespective of the degree of severity. This is a mere subsistence payment, not one which enables PWDs to live to any standard above the absolute bare minimum.

This amount equates to that of an unemployed person living without a disability. It fails to consider the extra costs a person with a disability encounters in everyday life. To most people, extra costs might be considered the things above and beyond necessities that one elects to purchase.

The additional costs of disability are estimated to be a third of average weekly income. These extras may include medications, dietary supplements, mobility costs, specific and regimented eating patterns, laundry costs, housing adaptations (above those which are fully subsidised) and extra heating costs (often due to a lack of mobility).

The long-term cost of disability for households with members that are severely and somewhat limited by their disabilities has been estimated to account for 32.7% and 30.3% of average weekly income respectively.

A 1995 survey by the National Rehabilitation Board indicated that 22% of participants with disabilities indicated they had to buy items specifically related to their disability each week, costing up to €59 per week in 2014 prices.

Examples of these costs vary widely according to product, need and supply. Medicines contribute a significant portion of extra expenditure. Elective Medication and related products not covered by the medical card can add up very quickly – creams, sprays, bandaging, cathetar bags for instance.

Since 2013, a €2.50 charge applies to all prescription medicines dispensed to medical card patients (a 1 euro increase from 2012 levels). It must be noted also that the Income threshold for a family to become entitled to a medical can fails to take account of the extra costs involved in raising a child with a disability. Heating can also be a significant burden on such families as well as individuals with disabilities.

The Fuel Allowance payment of 20 euro per week begins at the start of October and ends at the beginning of April. Having been cut in the 2013 budget from 32 to 26 weeks (with a one week “mercy’ extension granted in March the same year) , this payment takes no account of the heightened heating needs of those with mobility issues who require more heating per day and for a greater proportion of the year.

My own personal situation illustrates this as I require significant extra home heating due to my restricted mobility. Coal costs me 19 euros per bag. I use 2 bags per week which, together with a bag of sticks at 7 euro totals at 46 euro, 26 in excess of the allowance.

Dietary supplements or specific, regimented eating patterns can also result in greater cost being incurred owing to one’s disability. The high cost of items produced in small amounts due to the size of the market can make these items prohibitively expensive.

In relation to additional food costs, 20% of participants in a National Rehabilitation Board survey indicated their appetite increased as a result of their disability, while 16% indicated that they could not eat the same food as others in the household.

The same survey outlined increased expenditure in other areas, including 39% of participants indicating increased spending on clothes, 44% increased expenditure on footwear and 46% purchasing equipment aids involving costs ranging from €20 to €590 (in 2014 prices).

This is not to mention the large cost incurred in adapting one’s home to one’s needs. Often, the state provides a portion of this but this comes nowhere near the final expenditure, doubly inexcusable considering most of those in need of the funding are not in employment.

An example of a hidden extra cost is delayed state provision of equipment which can lead to waste in terms of an inferior standard of living, particularly when related to an essential item such as a wheelchair. This has even greater detrimental effect when the situation of those waiting on the equipment is changing at such a rate to make any delays particularly damaging.

A 1993 UN General Assembly resolution stated how “states should ensure that the provision of support takes into account the costs frequently incurred by persons with disabilities and their families as a result of the disability”.

As far back as 1995, a Cost of Disability payment was proposed, on that occasion by the Commission on the Status of People with Disabilities. The Commission gave a range of estimates of extra costs attributable to disability of €4 to €34 per week for those with low dependency needs.

For those with higher dependency, the values range from €40 to €250 a week The Cost of Disability payment proposed would be a variable, non-taxable payment, where services to meet the extra costs are not or cannot be provided.

The Commission stated “the Costs of Disability payment is designed to facilitate participation. It is not meant to replace all existing free schemes but rather to bring a unified philosophy to such payments as they apply to persons with a disability.

In 2002 the Forum of People with Disabilities published a document on the same topic. The conclusions drawn by both reports were summed up well by the then NDA chairperson ( and now mildly infamous) Angela Kerins who stated:

“The National Disability Authority sees the cost of disability payment as a basic equality issue. The ‘cost of disability’ can be defined as the amount it costs a disabled person to achieve the same standard of living as a non-disabled person. A Cost of Disability payment would help equalise the cost of living experienced by people with disability, whether they were in employment or not.”

It is important to note also that if disability increases the cost of living for households for a given level of income, poverty measures based on income will underestimate the problem, particularly given that in many cases, the disability involved means forgoing income.

There’s clearly a strong argument, not only for a Cost of Disability payment on top of the flat rate Disability Allowance but also for the introduction of disability adjusted poverty and inequality estimates.

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