Disability Tax in the Welfare State: Uncertainty and Resentment about Disability Services in Finland

Round 1

Reviewer 1 Report

Comments and Suggestions for Authors

I enjoyed reading this paper and have provided comments attached in the hopes that they assist the author in improving the work. 

Comments for author File: Comments.pdf

Author Response

Thank you for the insightful review and constructive feedback. Please find below my responses in red.

1. Intro:

- Well framed and argued from the beginning. Thank you.

- Timely and informative. Thank you.

- Need to clarify the difference between results and findings presented here with those presented in Katsui et al. 2023. Thank you for the comment. The difference appears only on lines 112-115.

2. Theoretical background;

- Would like a bit more information on the concept of lived citizenship - what it means and it’s purposes in the study. Thank you for the comment. More explanation is added to lines 72-75.

- There is an explanation of the term “disability tax” but I think a sentence or two

elaborating on what it means would be helpful. For example, while it is said that the tax refers to metaphorical burdens and does not mean costs to the government, I’m left wondering if it does include disability-related out of pocket costs that the person must expends? A formal definition would help here. Thank you for the comment. More explanation is added to lines 84-88.

3. Methodology

- This paper is focusing on lived citizenship. What have previous studies using this dataset looked at? Given the focus on lived citizenship, I want to reiterate the need for a more comprehensive explanation of it’s meaning. Thank you for the comment. This was attended on lines 72-75.

- The survey methods seem adequate and the sample suitable. I also want to complement the research team for conducting interviews with those not likely to participate in online surveys. Thank you for the comment.

4. Rejected applications.

- While I understand this is a big reason for concern, I have a hard time seeing this in terms of a “disability tax” at least how it’s explained now. In the beginning should include discussion of how rejection imposes a tax specifically. Thank you for the comment. I added in the beginning why it is a disability tax.

- The interviews complemented by comparative statistics are suggestive of such austerity measures. But can the authors point to specific policy changes constituting a retrenchment as described? What explains the rise of unmet needs or the decline of expenditures? It could be other things other than a policy change so it’s important. I don’t think we should interpret declining expenditures as necessarily indicative of policy retrenchment so more policy change information here would help support the claim. It is possible that increased digitization is a policy change that is indicative of retrenchment but changing disability assessment standards or increased benefit adequacy would seem to be more suitable. Thank you for the comment. The policy changes are taking place right now with the current government much more in a significant way of budget cut, but has been subtle in the previous governments. Thus it is hard to elaborate on any policy change yet. I added one study of the Finnish Disability Forum (2024) in the discussion chapter that deals with the current policy change that is manifested in the reality of disability services to highlight the timeliness of this study. I hope in this way, I could respond to this point.

5. Realization

- I think this qualifies under the disability tax idea insofar as not receiving allowed services means they have to get by themselves. But again the “disability tax” seems under defined at this point. Thank you for the comment. The point is taken. More explanation is added in the beginning.

6. Laborious complaint

- I think this is a very important section and I appreciate how it highlights the even larger challenges experienced by immigrants with disabilities. Thank you for the comment.

- This is consistent with the disability tax as a burden idea. Thank you for the comment.

7. Psycho-emotional

- That inadequate provision of services and the depth of stigma that exists in social services contributes to poorer mental health outcomes is a fine point. But viewing this again as akin to a “disability tax” feels like a reach. The intuitive notion of the idea of the disability tax is of a financial burden on the person with a disability. I think you need to be more clear that you are taking a far more expansive definition of the term. It would help the reader understand claims like this which feel odd given how the disability tax idea is naturally considered: “This psycho-emotional effect of disability tax on the identity and self-image of many persons with disabilities cannot be neglected when discussing disability services.” Thank you for the comment. I added some more explanation of disability tax so that the readers would understand it in an expanded manner.

 

8. Discussion and concluding remarks:

- Biopolitics references are provided without much consideration or explanation. Does this differ from neoliberalism? What am I to make of this idea of biopolitics? As it stands now, it reads a bit like theoretical speech that obscures from the larger aim of the paper. For example: “That is, disability policy and practice does not exist in a vacuum; they are embedded in global neoliberalism (Soldatic 2019; Somers and Soldatic 518 2020; Katsui 2023) on the one hand. On the other hand, the phenomenon of disability tax through the Finnish state’s actions and inaction concerning disability services is located in this context of biopolitics (see Foucault 2003).” Thank you for the comment. I added an explaining line after the first appearance of the concept of biopolitics to clarify what it means in the context of this paper.

 

Big comments:

- More background on policy changes in Finland in the past and potential retrenchment in the future. Thank you for the comment. The policy changes are taking place right now with the current government, which thus gives the value to this timely paper. As changes are taking place only now, it is discussed at the end in the Conclusion chapter. I added one phrase also in the abstract to highlight this point.

-Enhanced definitions of “disability tax” and “lived citizenship.” Thank you for the comment. These are important comments indeed. I added explanations to both concepts in the beginning.

- Clarification of specific contributions and differences with prior work. Thank you for the comment. I created a separate discussion chapter where I connect the findings with prior work of others. Moreover, the differentiation of the commissioned study with the current paper is elaborated more in the texts.

Minor comments:

“show self-reported unmet needs among 7 medical examinations among for persons with disabilities. P. 5 Thank you for the comment. This is corrected.

Reviewer 2 Report

Comments and Suggestions for Authors

I think the article makes an important contribution by centering disabled people rather than the policymakers who will often claim to assist disabled people. I think the article could be improved with a few small changes. 

1.  Finland should be in the title. 

2. Possible application to other areas should be clearer. The author does mention Nordic countries and implies much applicability to elsewhere in Europe. It's applicable to parts of the United States, California for instance. 

3. Some or all of the survey questions should be specified in an appendix. 

4.  The case for a relatively small sample should be explicit: it allows for greater depth than we often see. 

5.  The use of "tax" should be highlighted, perhaps given a section heading, also sometimes referred to as a "toll" or "crip tax." 

6. Although implied, can be clearer that the tax burden is much greater for those lacking in  privilege, and that some people are able to evade taxes while others are not. 

7. Some word choices are puzzling for instance  "Chapter" to refer to the last section. 

8. Passive voice should be avoided in places. Specify who it is that is creating a backlash. 

9. Mention of "premature death" in the last section might be linked to the concept of "structural violence" used a lot in peace studies. 

10. Is "lived citizenship" the same as "lived experience"? The difference should be mentioned. 

 

 

Author Response

Thank you very much for the insightful review and constructive feedback. Please find below my responses:

1.  Thank you for the comment. It is added.

2. Thank you for the comment. I know Nordic countries and UK rather well, but am hesitant to argue the applicability of my points to US due to lack of knowledge. Due to my ignorance, I would not like to make the argument too big.  

3. Thank you for the comment. I added several questions of the survey as Appendix 1.

4.  Thank you for the comment. I added one sentence in the Conclusion chapter why the results should not be generalized.

5.  Thank you for the comment. I highlighted “tax” in different places.

6. Thank you for the comment. This point is added in the conclusion chapter.

7.  Thank you for the comment. It is now changed to “section” in the texts.

8. Thank you for the comment. I made it clear that the current government is taking this deliberate choice.

9. Thank you for the comment. I added one reference on structural violence.

10. Thank you for the comment. “lived citizenship” is explained on lines 72-75 so that the readers can tell the difference from lived experience.

Reviewer 3 Report

Comments and Suggestions for Authors

Many thanks for the opportunity to review this paper which makes a strong contribution to current and enduring debates. Overall, it is in very good shape, but given that I suggest below some restructuring and possibly including some additional survey results if available, this tips it over from minor revisions to major. If consideration is given to the areas below, I would anticipate recommending publication.

Lines 128-129: ‘Ninety-two per cent responded in Finnish, 32 people responded in Swedish and 4 people responded in English’. Please change to percentages for consistency.

Lines 134-135: ‘The total of 772 responses shows that some respondents had multiple disabilities.’ Is there a simple way to categorise the data you have? Number of impairments (1, 2, 3+) is an important means of understanding additional barriers in UK studies, and this might work well in this paper. I appreciate this might not be straightforward depending on survey design, so only do this if it can be included relatively simply.

In general, it would help structurally to have the results in the results section and broader discussion moved to the end. In particular, the table and chart and associated discussion could be moved to the discussion.

Are there any substantive quantitative results you could introduce from the survey, or were the substantive questions all qualitative?

In the discussion, it might be worth considering briefly whether smaller changes (reversing austerity cuts but retaining the system broadly as it is) are sufficient, or if there are fundamental flaws in conditionality and needs/means testing and whether more universal approaches resolve some of this. See https://doi.org/10.1332/204378920X15989751152011 for some discussion on this.

Author Response

Thank you very much for the insightful reviews and constructive feedback. I added my responses in red as below:

Lines 128-129: ‘Ninety-two per cent responded in Finnish, 32 people responded in Swedish and 4 people responded in English’. Please change to percentages for consistency. Thank you for the comment. Changes are made according to the kind suggestion.

Lines 134-135: ‘The total of 772 responses shows that some respondents had multiple disabilities.’ Is there a simple way to categorise the data you have? Number of impairments (1, 2, 3+) is an important means of understanding additional barriers in UK studies, and this might work well in this paper. I appreciate this might not be straightforward depending on survey design, so only do this if it can be included relatively simply. Thank you for the kind advice. I do understand the significance of this piece of information. Unfortunately, we did not differentiate the impairments in an aggregated manner (ex. 1+2) but only disaggregated according to impairments (ex. 1 or 2) when extracting from the data. In addition, we decided not to identify impairments to interview or survey citations, as a combination of information (ex. immigrant + impairment or gender) can increase the risk of identification.

In general, it would help structurally to have the results in the results section and broader discussion moved to the end. In particular, the table and chart and associated discussion could be moved to the discussion. Thank you for the kind advice. I moved the related table and chart and created a Discussion chapter.

Are there any substantive quantitative results you could introduce from the survey, or were the substantive questions all qualitative? Thank you for the advice. I added one table with statistics on disability services in the beginning of the results. There are many other quantitative results out of the survey, but they are not directly underlining the result of this paper (though they are all relevant indeed). Therefore, they are not included in this paper focusing on disability services.

In the discussion, it might be worth considering briefly whether smaller changes (reversing austerity cuts but retaining the system broadly as it is) are sufficient, or if there are fundamental flaws in conditionality and needs/means testing and whether more universal approaches resolve some of this. See https://doi.org/10.1332/204378920X15989751152011 for some discussion on this. Thank you for the advice. As behavioral science was not actively used in the analysis, I pointed out the importance of it for future research in the conclusion section. I hope this is sufficient to attend this point.

 

Round 2

Reviewer 3 Report

Comments and Suggestions for Authors

Many thanks for the revised manuscript. I am satisfied with the vast majority of changes. Before publication, I would suggest merging the discussion and conclusion sections more fully as there is a good deal of material in the conclusion that is relevant to the discussion and vice versa. This can be done without further review.

Author Response

Dear reviewer,

Thank you very much for the quick reaction once again.

I was instructed by the editor to separate discussion and conclusion during the first round of review.

I hope this is OK with you. 

Thank you so much for your kind support.

Warm regards,

Hisayo