The Silent Majority: Understanding and Supporting Access and Inclusion for People with Disabilities Living in Predominantly Low-Resource Communities

Round 1

Reviewer 1 Report

Comments and Suggestions for Authors

General comments:

This is a nice little study that starts raising the issue of how change happens at a local level. This is really important as a focus as the tendency is to always focus on the broader policy level. But the paper loses the opportunity to focus on the role of local leaders (neighbourhood presidents) in creating that change. It is about much more than health needs and about the role of health care professionals. It would be a really strong and original paper if that could be revised. It’s almost as if the health needs issues is being forced into the paper.    

 

The same data can be used to rethink the paper differently as a more local politics type of paper and how change happens, that includes health needs but goes much broader.

 

The title suggests a focus on health needs but the abstract suggests a broader community engagement focus. Maybe revise the title as the paper is about a broader focus.

 

Detailed comments:

1.       Terms ‘community engagement’, ‘community integration’ and ‘community inclusion’ are used. Are these being used interchangeably? If yes it may be good to add a statement to that effect or provide some indication of why the different phrases are used.

2.       Line 79: possibly change ‘neighborhood leaders’ to ‘neighborhood presidents’ to avoid any confusion and as you have already introduced the notion of ‘presidents’.

3.       Line 82: were the ‘rural or suburban communities’ not economically depressed?

4.       Participants: Explain how the 12 neighborhoods were selected from the 99.

5.       Comment on the short interview duration relative to the planned up to 1 hour.

6.       Lines 130-132: “Public transportation (e.g., buses), when available, were generally accessible for wheelchair users. While these methods were obtainable, they were generally reported as unreliable or unusable because of high wait times or tardiness.” To avoid the ambiguity of ‘While these methods were obtainable’ the following rephrasing is suggested: ‘Public transportation (e.g., buses), when available, were generally accessible for wheelchair users, but were generally reported as unreliable or unusable because of high wait times or tardiness.”

7.       Lines 143-142: What would be interesting is to clarify is if those presidents that did not identify inclusion as a priority issue but did understand laws that require accessibility (e.g. didn’t really understand it or see the need), or clearly saw accessibility as a first step and had as a vision a final goal of inclusion, (accessibility as the first step as a component of inclusion – which is suggested by the theme name). The 2 neighbourhoods who did have inclusive approaches, how did they view accessibility? I guess it’s about having a vision of inclusion vs just applying the laws that require accessibility.

8.       Lines 265-266: “Given its qualitative nature, the findings cannot be generalized to the general population of people with disabilities.” It can’t be generalised to all neighbourhood leaders/presidents as you are not talking to people with disabilities but these leaders.

9.       The discussion and conclusions should focus on how to address the way neighbourhood presidents work with and understand inclusion to assist the way they foster inclusion. Maybe re-focus these last 2 sections on that.

10.   While the references are good, there could be more focus on the role of leaders in creating change. It seems a missed opportunity to focus on how these neighbourhood presidents could be empowered to the make the change to inclusion.

Author Response

Thank you for your thoughtful feedback. We agree in that the mention of “health” distracted from the focus of the paper. We have revised the entirety of the manuscript to emphasize a broader focus on access and inclusion needs, as opposed to a forced mention of health. This includes changes to the title, abstract, and wording throughout the paper. The title now reads: “The Silent Majority: Understanding and supporting the access and inclusion needs of people with disabilities living in predominantly low resource minority neighborhoods from the perspective of local representatives.” In addition, please find the detailed responses below and the corresponding revisions in track changes in the re-submitted files. 

Detailed comments:

Comment 1: Terms ‘community engagement’, ‘community integration’ and ‘community inclusion’ are used. Are these being used interchangeably? If yes it may be good to add a statement to that effect or provide some indication of why the different phrases are used.

Response 1: A great point. We have removed “integration” from the manuscript and defined community engagement in the first paragraph of the Introduction: “community engagement (i.e., full physical or social participation in the community to meet the needs of people with disabilities) is impeded by a lack of accessible and inclusive support." (page 1, lines 39-41)

Comment 2: Line 79: possibly change ‘neighborhood leaders’ to ‘neighborhood presidents’ to avoid any confusion and as you have already introduced the notion of ‘presidents’.

Response 2: To avoid confusion, we have revised “leaders” to “presidents” throughout the manuscript.

Comment 3: Line 82: were the ‘rural or suburban communities’ not economically depressed?

Response 3: We reworded this statement to avoid confusion: “A low-resource community was identified as an Empowerment or Opportunity Zone (an area that is economically distressed as classified by the federal government), which were primarily rural or suburban communities.” (page 2, lines 86-88)

Comment 4: Participants: Explain how the 12 neighborhoods were selected from the 99.

Response 4: This is now explained in this section: “The 12 neighborhoods were selected based upon their participation in community outreach efforts by the National Center for Health Physical Activity and Disability (NCHPAD), a Center funded by the Center for Disease Control and Prevention.” (page 2, lines 90-92)

Comment 5: Comment on the short interview duration relative to the planned up to 1 hour.

Response 5: This is now mentioned as a limitation to the study: “Another limitation was the average length of interviews. Interview durations were planned to last up to an hour. The interview duration seemed to depend upon the size of the neighborhood and the president’s experiences and efforts to work with people with disabilities.” (page 8, lines 305-308)

Comment 6: Lines 130-132: “Public transportation (e.g., buses), when available, were generally accessible for wheelchair users. While these methods were obtainable, they were generally reported as unreliable or unusable because of high wait times or tardiness.” To avoid the ambiguity of ‘While these methods were obtainable’ the following rephrasing is suggested: ‘Public transportation (e.g., buses), when available, were generally accessible for wheelchair users, but were generally reported as unreliable or unusable because of high wait times or tardiness.”

Response 6: Thank you for your advice! The sentence has been revised as recommended. "Public transportation (e.g., buses), when available, were generally accessible for wheelchair users, but were generally reported as unreliable or unusable because of high wait times or tardiness." (page 4, lines 140-142)

Comment 7: Lines 143-142: What would be interesting is to clarify is if those presidents that did not identify inclusion as a priority issue but did understand laws that require accessibility (e.g. didn’t really understand it or see the need), or clearly saw accessibility as a first step and had as a vision a final goal of inclusion, (accessibility as the first step as a component of inclusion – which is suggested by the theme name). The 2 neighbourhoods who did have inclusive approaches, how did they view accessibility? I guess it’s about having a vision of inclusion vs just applying the laws that require accessibility.

Response 7: You provided brilliant insight. After some thought and discussion, we revised this paragraph to agree with your assessment: tackling access AND having a vision for inclusion is important. We added wording and interview detail where we could throughout the paragraph to support this idea: “All presidents were aware of laws related to accessibility and spent considerably more time discussing accessibility than inclusion. Four presidents explicitly noted that inclusion could not be achieved without access. Two of these presidents had a vision for what inclusive programs could be in their neighborhood, and two others represented neighborhoods that had inclusive programs. One neighborhood with inclusive programs was small and could allocate other residents to assist with transportation. The other had a strong network of neighborhood friends that relied on each other for transportation. For these two neighborhoods, staff members with knowledge of how to work with people with disabilities were available and critical for successful engagement. Thus, access and inclusion were perceived as a tiered process, where access and a vision for inclusion (i.e., not simply applying laws to promote access) were needed prior to creating inclusive opportunities.” (pages 4-5, lines 145-157)

Comment 8: Lines 265-266: “Given its qualitative nature, the findings cannot be generalized to the general population of people with disabilities.” It can’t be generalised to all neighbourhood leaders/presidents as you are not talking to people with disabilities but these leaders.

Response 8: Thank you for spotting this error. We have fixed this sentence: “Given its qualitative nature, the findings cannot be generalized to all neighborhood presidents.” (page 8, lines 300-301)

Comment 9: The discussion and conclusions should focus on how to address the way neighbourhood presidents work with and understand inclusion to assist the way they foster inclusion. Maybe refocus these last 2 sections on that.

Response 9: A discussion on inclusion did seem missing from the Discussion. We have added a paragraph that presents how health professionals could work with presidents to understand and address inclusion: “Empowering neighborhood presidents to tackle issues related to inclusion should not be ignored. Inclusive programs or the concept of inclusion was less understood by presidents or addressed by neighborhoods. Two neighborhoods had inclusive programs and opportunities for their residents. In accordance with one of the resultant themes, “Knowledge supports needs and empowers changes”, health professionals can serve as a bridge for extracting knowledge of successful strategies that foster inclusion between neighborhoods. For example, a vision of inclusion seemed linked with actual inclusive opportunities or, even, hopes of creating these opportunities. Simply resolving issues with accessibility by applying local laws and resources will likely not be sufficient to resolve inclusion. Previous studies have demonstrated that empowering leaders within the community to foster inclusive opportunities for people with disabilities can be achieved through several relevant strategies, such as the creation of sustainable relationships and supportive networks, joint problem solving, welcoming disruption, and community-led objectives [18-22]. These methods should align with the Social Model of Disability, where the focus or blame is not on the person with a disability that has an impairment that directly prevents them from participation, but instead places the blame on a society that socially isolates and oppresses [23]. A benefit to this view is that it unites people with disabilities for political action [23]." (page 7, lines 264-281)

Comment 10: While the references are good, there could be more focus on the role of leaders in creating change. It seems a missed opportunity to focus on how these neighbourhood presidents could be empowered to the make the change to inclusion.

Response 10: We added 6 references to the new inclusion paragraph of the discussion (mentioned in the above response), which support empowering leaders to address inclusion.

 

 

Author Response File: Author Response.docx

Reviewer 2 Report

Comments and Suggestions for Authors

Thank you for the opportunity to review this manuscript. I really enjoyed reading this! I think this is very well-based conceptually - looking at the "first level" of public officials regarding accessibility and inclusion. I appreciate the authors' use of socio-ecological model. This is also supported by the Social Model of Disability, which may deserve a mention? In the methods section, it was unclear to me how a suburban community (listed on line 82) could be considered low-resource. These are typically higher income. So, being more specific about how suburban neighborhoods would fit the target population would be helpful. My only real criticism of this study is the lack of inclusion of people with disabilities in the study process, which the authors do call out as a limitation. Otherwise I think this is a really strong manuscript. Nicely done!

Author Response

Thank you for the kind words and constructive feedback! Please find the detailed responses below and the corresponding revisions in track changes in the resubmitted files. 

Comment 1:  I appreciate the authors' use of socio-ecological model. This is also supported by the Social Model of Disability, which may deserve a mention?

Response 1: As recommended, we added mention of the Social Model of Disability to the Discussion, where inclusion is mentioned: "These methods should align with the Social Model of Disability, where the focus or blame is not on the person with a disability that has an impairment that directly prevents them from participation, but instead places the blame on a society that socially isolates and op-presses [23]. A benefit to this view is that it unites people with disabilities for political action [23].” (page 7, lines 277-281)

Comment 2: In the methods section, it was unclear to me how a suburban community (listed on line 82) could be considered low-resource. These are typically higher income. So, being more specific about how suburban neighborhoods would fit the target population would be helpful.

Response 2: In response to the second comment regarding suburban communities, we reworded this statement to avoid confusion: “A low-resource community was identified as an Empowerment or Opportunity Zone (an area that is economically distressed as classified by the federal government), which were primarily rural or suburban communities." (page 2, lines 86-88)

Author Response File: Author Response.docx

Round 2

Reviewer 1 Report

Comments and Suggestions for Authors

The comments from my first review have been well addressed. The remaining suggestions are very minor and relate to wording and adding more explanation on the selection of the participants.

Section 2.1: Selection of 12 - it’s still not clear if there was a selection within those that participated in the outreach efforts by the NCHPAD. State how many participated in the outreach programme and if more than 12, add an explanation of how you selected the 12 from the larger number.

Also add sentence in the discussion or limitations on what impact being part of the outreach programme may have had on the participants’ perspectives.

Line 144: Change ‘were’ to ‘was’. My error in the proposed change!

Line 273: Maybe rephrase to avoid the comparator ‘less’ – e.g. ‘…the concept of inclusion was less understood…’ – less understood than someone else or than another concept? Replacing ‘less’ with ‘not well’ addresses the problem.     

Author Response

Thank you for your timely response and review. We thank the reviewer for the feedback, which will certainly help the readability and quality of the paper. We have responded to the comments below and have made changes as recommended by the reviewer.

Comment 1: Section 2.1: Selection of 12 - it’s still not clear if there was a selection within those that participated in the outreach efforts by the NCHPAD. State how many participated in the outreach programme and if more than 12, add an explanation of how you selected the 12 from the larger number.

Also add sentence in the discussion or limitations on what impact being part of the outreach programme may have had on the participants’ perspectives.

Response 1: A great point. We have added that the sample was a convenience sample in the Methods and have noted that this is a limitation in the Limitations section. We also mention that their participation in our outreach program may have biased their responses. The wording is presented below:

“The 12 participants were chosen based on convenience. The first 12 to respond to recruitment efforts were selected to be included in the study.” (page 2, lines 93 - 94)

“Participants were selected to be included in the study on a first-come, first-served basis. Those who responded first were selected to be included in the study, which could have inadvertently biased their responses. A convenience sample, as opposed to a purposive sample of people with specific characteristics, could also limit the generalizability of the findings to all neighborhood presidents within the state. Moreover, since participants were recruited from our community outreach program, this could have also led to bias in their responses.” (page 8, lines 310 -316)

Comment 2: Line 144: Change ‘were’ to ‘was’. My error in the proposed change!

Response 2: Thank you. This has been corrected. We also reviewed and corrected other errors of grammar throughout the paper.

Comment 3: Line 273: Maybe rephrase to avoid the comparator ‘less’ – e.g. ‘…the concept of inclusion was less understood…’ – less understood than someone else or than another concept? Replacing ‘less’ with ‘not well’ addresses the problem.

Response 3: Thank you, we fixed as recommended! "Inclusive programs or the concept of inclusion was not well understood by presidents or addressed by neighborhoods." (page 7, line 267)

Author Response File: Author Response.docx