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Comments from an ME/CFS perspective on “The Green Paper on Disability Reform:a flawed effort to reform payments for people with disabilities"(Cousins)

(This relates to matters in the Republic of Ireland so may have minimal interest for people in other countries)

I thought I would make a quick post to share some extracts from, and comments on, The Green Paper on Disability Reform: a flawed effort to reform payments for people with disabilities (February 19, 2024) by Dr Mel Cousins, School of Social Work and Social Policy, Trinity College Dublin
https://publicpolicy.ie/health/the-green-paper-on-disability-reform-a-flawed-effort-to-reform-payments-for-people-with-disabilities/#:~:text=The Green Paper proposes to,and means-tested components).

I have just read this. It contains some interesting statistics about the situation in Ireland.

I’m going to highlight a few extracts I found particularly interesting.

“A range of studies have shown that people with disabilities in Ireland do incur additional costs (Indecon, 2004; Cullinan, et al., 2008; 2011; Cullinan and Lyons, 2014). These include equipment and disability aids; transport and communications; medical care; and personal care. As outlined in the Green Paper, a recent Indecon (2021) study commissioned by the DSP produced an estimated range of costs which are related to the degree of a person’s disability. The range of costs ranged from €11,579 to €16,284, or between €9,282 and €14,513 using an econometric/equivalent standard of living approach. This was based on a survey of direct costs reported by people with disabilities. The study also showed that the costs incurred by a person with a severe disability are estimated to be about €5,000 a year more than faced by an unemployed person without a disability.

[Aside: Incidentally the Cullinan mentioned is the John Cullinan who jointly worked with the Irish ME/CFS Association on a research project that looked at the economic impact of ME/CFS in Ireland]
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"The Commission on the Status of People with Disabilities (1996) recommended that there should be

‘a graduated payment to meet the additional everyday costs associated with disability. This payment, which would be made irrespective of whether the person is at work or not, would be called the ‘Costs of Disability Payment'"


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"The number of DA recipients grew by 55% in the decade to 2022 and only about half of this increase can be attributed to demographic and disability prevalence changes (Doyle, 2023). The majority of DA recipients (54%) are over 45 (with 78% over 30). However, the number of young claimants (under 20) has increased from 5% in 2016 to 8% in 2022. Over a third (37%) remain on the scheme for 10 years. Only 16% are in employment and DA claimants are more likely than the overall population to be working in lower paid sectors and occupations.

One third of inflows to DA in 2022 (13,800) came directly from Domiciliary Care Allowance (DCA), i.e. claimants turned 16 and transferred onto DA (Doyle, 2023).[xiii] A further third came from unemployment (34%) with a quarter (25%) coming from short-term illness benefit. Meanwhile, over half (54%) of all outflows from DA are not moving into work but onto other social welfare payments, mainly the State (old age) pension. Almost all inflows to IP (5,200 in 2022) come from short-term illness benefit, meaning that over 40% of all inflows to the two main long-term payments come from short-term IB."


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"There are a number of issues with the proposals. First, they do not address the costs of disability issue in any coherent manner. If the higher rates of benefit to people with higher levels of incapacity are intended to do this, there is a lack of evidence as to what disability costs people of tier 1 might have or the extent to which they may vary depending on personal and other circumstances. And, of course, this proposal is of no benefit at all to people with disability-related costs who do not receive a disability payment, e.g. people on State (old age) pension.

In terms of employment, the Green Paper proposes that PWD should have to engage with the employment services. It does not explain how the employment services will be made to engage with people with disabilities. It seems highly unlikely that the current employment services would be able to engage in a meaningful manner with significant numbers of people with disabilities. As critics of the proposals have pointed out, the Green Paper does not include proposals to remove barriers to employment, such as improving workplace accessibility or disability equality training for employers."

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In some ways, it is coming from a different place than where I’m coming from.

See:

"A review of international experience would suggest that, indeed, it is difficult to get people who are on long-term disability payments (back) into the labour market (OECD, 2010). Therefore, rather than an emphasis on welfare-to-work, there needs to be an emphasis on work-to-welfare, i.e. on limiting the movement of people from employment to welfare by facilitating their retention in employment. This would address the main source of inflows to long-term disability payments.[xv]

To do this, there are two key lessons from a policy perspective. First, as highlighted by the OECD (2010), there is a need for cultural change supported by financial and other incentives for all actors (employers, individuals, medical professionals and social protection authorities) to promote work-retention and return to work. As part of this, reforms need to take into account the overall labour market and social protection systems to ensure that particular approaches will have a positive impact and not simply lead to a transfer of costs from one sector to another or a transfer of claimants from one welfare scheme to another.

Second, early intervention to reduce sickness absence and promote return to work is most effective. The countries which have been most successful in achieving return to work (such as the Netherlands) have put the focus on assessing work capacity and developing return to work plans at an early stage. In contrast, by the time people are approaching long-term incapacity they have (almost by definition) reduced work capacity and they are further from the labour force. Rates of return to work from long-term disability are low in most countries.

International experience shows a number of measures which could be relevant to Ireland (Cousins et al., 2016). These include reforming the role of sickness certifiers to place an increased emphasis on return to work; strengthening early reassessment of people at risk of moving onto longer-term receipt of sickness and disability payments; and engaging employers centrally in the process in the context of the new statutory sick pay scheme. Despite the difficulties involved, a more structured approach to supporting people with disabilities into employment should also be developed. In this context, there is a case for looking at whether the approaches adopted in Norway (e.g. dialogue meetings between worker, employer and doctor)[xvi] and the UK (e.g. Work and Health Programme) could be relevant in an Irish context. The Work and Health Programme (WHP) is an employment support programme which provides support to people to find and keep a job and is available to persons with health conditions or disabilities, and others. Evaluations have found a range of positive outcomes for WHP participants (DWP, 2023).”


Tom’s comment: I am not an expert on all conditions and all the people who get disability payments in Ireland. It is probably true that some people with ME/CFS could benefit from more disability accommodations at work. Saying that I don’t think the system is too easy in terms of letting people with ME/CFS get disability payments. And I definitely don’t think it should be made more difficult to access them. Many people will ME/CFS do long-term damage in the early years after becoming ill because they are unable to cut back on the demands on their energy and body from work, study or other activities they were doing when they became ill. More rest in the earlier periods, rather than looking for people to stay in work, likely would benefit in the long term in terms of people’s work capacity.

From the conclusion:

And while the idea of categorising people by level of disability sounds appealing, assessing disability is an inherently difficult task (Cousins et al., 2016). There is nothing to suggest that the approach proposed (using current assessment methods) can do this in a reliable manner.

I definitely agree with this, though I am not familiar with that publication. Certainly with regard to ME/CFS, it is very easy to underestimate how disabling it is.

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I thought I would end by reminding people that submissions can be made on the green paper on disability reform itself (not to be confused with the article I'm commenting on in this blog post) on or before March 15, 2024. See here: https://www.gov.ie/en/consultation/...ion-to-reform-disability-payments-in-ireland/ . The Irish ME/CFS Association has written a substantial draft proposal which can be accessed here:
<https://1drv.ms/w/s!AoHfldspRkWU09wkKey5ROX6x_mWQA?e=nQ4ZbM> or here
<https://www.dropbox.com/scl/fi/5jjk...-12.docx?rlkey=08x1v95vw0pixy1gp6cfilzes&dl=0>

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Tom Kindlon
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