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. 2024 Dec 20;19(12):e0315008. doi: 10.1371/journal.pone.0315008

Colliding public health priorities: A call to improve the understanding of autistic individuals utilizing housing assistance

Lindsay Shea 1,*, Anne Roux 1, Amy Blank Wilson 2, Jonas Ventimiglia 1, Conner Carlton 1, Wei-Lin Lee 1, Dylan Cooper 1, Shelby Frisbie 1
Editor: Edward Chiyaka3
PMCID: PMC11661572  PMID: 39705270

Abstract

The objective of this study was to identify utilization of housing support provided by the U.S. Department of Housing and Urban Development (HUD) among autistic people in the U.S. Using 2008 and 2016 Medicaid data, we identified autistic individuals birth to 61 years and linked them to national HUD data. We characterized demographics, co-occurring conditions, and HUD program involvement. Autistic Medicaid enrollees enrolled in HUD increased by 70% between 2008 and 2016. Among 846,350 autistic Medicaid enrollees in 2016, 10.4% (n = 88,315) were HUD-assisted. HUD-assisted autistic individuals, versus non-HUD-assisted, were more likely to be Black/African American and less likely to have private insurance. Most lived in urban areas and were enrolled in the Housing Choice Voucher program. Approximately 2,600 autistic individuals (3%) were homeless at HUD entry. Growing numbers of HUD-assisted autistic individuals point toward an urgent need for federal data to understand and address public health contexts of housing affordability and instability to complement existing clinical autism research investments. Integrated public health, housing, and disability supports must address equitable income supports and housing assistance needed to support the health needs of autistic individuals.

Introduction

Increasing prevalence of autism, the fastest growing developmental disability in the U.S. [1], and a national housing crisis, represent distinct, multifaceted public health priorities that are typically examined separately. Datasets, generated from the multiple, siloed health, housing, and disability service delivery systems which autistic people and their families to navigate, have rarely been linked to examine these cross-system experiences. To date, autism research has mainly focused on the clinical aspects of autism diagnosis, primarily among children and, largely lacks a public health approach [2].

Affordable, quality housing fundamentally shapes health outcomes [3, 4]. Despite people with disabilities representing a significant share of the population in need of housing assistance [5], and the potential for compounding health risks while living under these circumstances [5, 6], the intersection of housing and health among autistic people is largely unknown. The autistic population experiences increased rates of suboptimal health and mental health outcomes, low employment rates, and poor self-reported wellbeing even in stable housing situations [7, 8]. When research has included autistic individuals from minoritized communities (largely focused on children) [9], adverse health and mental health outcomes observed are more frequently observed and reported [10–13]. Unaffordable housing may exacerbate these disparities and impede access to needed services within this population across the lifespan, given that housing insecurity generates financial strain limiting ability to navigate services.

In the U.S., Medicaid is the primary source of health insurance for autistic people. Medicaid covers community-based services but does not typically cover housing costs. The Department of Housing and Urban Development (HUD) is the primary federal source of housing assistance in the U.S, available to people with developmental disabilities like autism. Eligibility for HUD support is determined based on annual gross income, disability or elderly status (or a family member of a person in these groups), family size, and US citizenship.

HUD administers three predominant programs: multifamily housing (MF) which subsidizes rent in multi-unit properties, public housing (PH) which provides affordable rental housing units, and the Housing Choice Voucher (HCV) program which is the largest source of rental assistance in the nation for tenants [6]. The innovative use of linked Medicaid and HUD data can explicate the relationship between housing assistance and health among autistic people to inform comprehensive public health strategies to address the care needs of this growing group. This study is the first known examination of linked HUD and Medicaid data to characterize the population of autistic people receiving HUD assistance.

The [BLINDED FOR PEER REVIEW] IRB approved this study, including a waiver of informed consent, for the use of national claims data. Data for this study were accessed from January 1, 2024 through August 1, 2024. No contact information for individual participants was accessed.

Materials and methods

Autistic individuals were identified from the national Medicaid Analytics eXtract files (MAX) and the T-MSIS Analytic Files (TAF) using claims from January 1 to December 31 in 2008 and 2016. Beneficiary IDs were deduplicated across data years. We identified an autism diagnosis using a validated claims-based algorithm generated by the Chronic Conditions Warehouse (CCW) developed and operated by the Centers for Medicare and Medicaid Services (CMS) that requires either two outpatient claims or one inpatient diagnosis code (ICD-9 299.x or ICD-10 F84.X) on a claim during the study period [14]. To address administrative churning, we included individuals with at least 9 months of Medicaid enrollment during a consecutive 12-month period during the study period.

We created Medicaid-HUD linked datasets for 2008 and 2016 using social security numbers and limited to individuals 0–61 years of age, the definition of “non-elderly” in HUD data, and tracked the number of autistic HUD-assisted individuals each year. We examined HUD program type, geographic region, urbanicity, duration of enrollment, number of people in the household, homelessness at HUD entry, and median family income for 2016. HUD program types included Public Housing, Multi-Family Housing, and Housing Choice Vouchers.

We characterized the cohort of autistic individuals receiving HUD assistance by age group, sex, race/ethnicity, and health insurance. Co-occurring intellectual disability was also identified using a CCW validated algorithm [14]. Analyses were performed using SAS version 9.4. [BLINDED] University’s Institutional Review Board approved this study, including a waiver of informed consent.

Results

There were 52,924 autistic Medicaid enrollees represented in the HUD data in 2008 (Table 1). This increased by 70% to 88,315 individuals in 2016. Thus, 10.4% of the 846,350 autistic Medicaid enrollees in 2016 were HUD-assisted. Among this group, 10,334 autistic individuals lived with at least one other autistic person. During the same period, the overall population of HUD-assisted individuals decreased slightly from 11,608,614 to 11,507,157. A greater proportion of HUD-assisted autistic individuals were Black/African American than their counterparts without HUD enrollment (33.3% versus 13.5%). HUD-assisted autistic individuals were less likely to have private insurance, and 72.2% were children under age 18.

Table 1. Sample characteristics of autistic Medicaid enrollees in 2016.

  HUD Involvement No HUD Involvement
  (N = 88,315) (N = 846,350)
  N % N %
Age        
    0–17 63,782 72.22% 590,785 69.80%
    18–25 11,130 12.60% 138,074 16.31%
    26–45 9,738 11.03% 91,033 10.76%
    46–61 3,665 4.15% 26,458 3.13%
Race/Ethnicity        
    Asian/Pacific Islander 1,304 1.48% 25,002 2.95%
    Black/African American 29,376 33.26% 114,240 13.50%
    Hispanic/Latino 14,934 16.91% 150,245 17.75%
    Native Alaskan/American 578 0.65% 7,065 0.83%
    White 32,805 37.15% 447,801 52.91%
    Multi-race 1,349 1.53% 9,632 1.14%
    Missing 7,969 9.02% 92,365 10.91%
Female 21,216 24.02% 194,871 23.02%
Insurance (in addition to Medicaid)      
    Private 8,320 9.42% 166,116 19.63%
    Medicare 10,616 12.02% 94,376 11.15%
Co-occurring ID 21,868 24.76% 229,566 27.12%
Hud Program Type a        
    HCV 49,270 58.84%    
    PH 17,777 21.23%    
    MF 16,633 0.1986    
    Other (none of the above) 52 0.06%    
Region        
    Northeast 24,999 29.86%    
    Midwest 18,596 22.21%    
    South 22,156 26.46%    
    West 13,350 15.94%    
    U.S. Territories 4,631 5.53%    
Urbanicity        
    Urban 62,783 74.98%    
    Suburban 12,785 15.27%    
    Rural 1,503 1.80%    
    Missing 6,661 7.96%    
Duration in HUD (mean) 6.74 years    
# in household        
    1 11,906 14.22%    
    2 17,472 20.87%    
    3 21,042 25.13%    
    4 16,507 19.71%    
    5+ 16,805 20.07%    
Homeless at entry 2,669 3.02%    
Income b        
    Total annual income $16,754    
    Very low income 76,560 91.43%    
    Extremely low income 54,765 65.41%    
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Notes:

aHUD types: HCV = Housing Choice Vouchers, PH = Public Housing, MF = Multi-family Housing.

bIncome is measured as the median family income. Very Low Income = families with incomes not exceeding 50% of the median family income for their area (or the federal poverty guidelines), Extremely Low Income = families with incomes not exceeding 30% of the medican family income for the area. Source of income information: https://www.huduser.gov/portal/datasets/il//il24/IncomeLimitsMethodology-FY24.pdf

Nearly 60% of autistic HUD-assisted individuals received the Housing Choice Voucher, and 21% were enrolled in Public Housing. The mean duration of HUD assistance was 6.7 years, and 20% of autistic HUD-assisted individuals resided in households with five or more individuals. Most 75% lived in urban areas, and in northeast or south regions of the U.S. A small proportion (3%) were homeless at HUD entry, although this totaled over 2,600 autistic individuals (82% under the age of 18). The median family income for HUD-assisted households with an autistic individual was $16,754, and 65% met HUD’s criteria for extremely low income (i.e. 30% of the Area Median Income or less).

Discussion

Examining the intersection of public health priorities, including housing assistance and autism prevalence, is increasingly urgent as the escalating housing crisis severely impacts disabled people. Increasing numbers of HUD-assisted autistic individuals, and the frequency of extremely low-income families within this group, underscores growing financial hardship within this population. These individuals likely need comprehensive support systems that integrate financial assistance with housing, healthcare, transportation, and employment [15]. Nearly three-fourths of HUD-assisted autistic Medicaid enrollees were children, compared to a rate of 35% in the overall HUD population [16]. Lower enrollment among autistic adults may reflect lack of capacity to identify and serve autistic adults as noted in other public service systems [17].

Our findings elucidate a need for preemptive interventions to identify autistic individuals at risk for homelessness, including a need for new and modified assessment and service planning tools, and to provide stabilization resources, including emergency housing options. A recent survey of Georgians with developmental disabilities found that 4.2% were experiencing homelessness–more than twice the rate of homelessness among non-disabled Georgia residents [18].

Disproportionately higher rates of HUD enrollment among Black/African American autistic individuals echo concerns that minoritized populations face compounded disadvantages, including increased exposure to environmental and social stressors and disproportionate barriers to service access, that exacerbate health disparities [19]. A larger share of HUD-assisted autistic individuals resided in urban areas which feature unique barriers regarding transportation, crime, healthcare access, and food deserts. Continued observations of housing and service access among rural autistic populations are needed to assess geographically equitable public health strategies.

The predominance of autistic individuals in the Housing Choice Voucher program suggests that this program may be particularly beneficial due to its opportunities for autonomy and community integration but suggests a need for support to navigate options in a complex housing market. Very few autistic individuals (1,979 or 2.24% of autistic HUD-supported individuals) used Multifamily Section 811 Supportive Housing for Persons with Disabilities, indicating that the reach of this disability-focused program to autistic individuals may be limited. Across programs, autistic individuals relied on HUD support for extended periods (mean of 6.7 years), emphasizing the need for sustained and stable housing options that can adapt to the long-term care needs of autistic individuals.

Limitations of this research include reliance upon linked claims data collected for billing purposes. Claims did not represent autistic HUD-assisted people who were not enrolled in Medicaid. The extensive timeline to acquire and link data precluded analysis of more recent data, although current findings provide a novel contribution and establish a baseline for future comparisons.

Intertwined challenges of increasing autism prevalence and housing gaps must be examined together, given their additive effects. Federal action to catalyze timely data access is key for building the public health evidence base and prioritizing opportunities to advance access to affordable and stable housing among people with disabilities. Linked HUD-Medicaid data propels research that reflects real-world experiences across populations. Populations with rapidly increasing prevalence, including autism, have an inherently reduced evidence base which hinders the prediction, definition, and calibration of programs to meet their needs. Findings emphasize the importance of cataloging the impact of systemic racism and disparities across systems. Future research should explore outcomes of housing assistance among autistic individuals to identify key policy strategies (e.g. emerging Medicaid waivers that include housing supports and the waiting list for HUD programs).

Data Availability

Medicaid claims data are governed by the Centers for Medicare and Medicaid Services (CMS). Data requests to CMS are processed by the Research Data Assistance Center (ResDAC) found at: https://resdac.org/.

Funding Statement

This project is supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under cooperative agreement UT6MC45902 Autism Transitions Research Project. The information, content, and/or conclusions are those of the author and should not be construed as the official position or policy of, nor should any endorsements be inferred by HRSA, HHS or the U.S. Government. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.

References

  • 1.Maenner MJ, Warren Z, Williams AR, et al. Prevalence and Characteristics of Autism Spectrum Disorder Among Children Aged 8 Years—Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2020. MMWR Surveillance summaries. 2023;72(2):1–14. doi: 10.15585/mmwr.ss7202a1 [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 2.Interagency Autism Coordinating Committee (IACC). 2021–2023 IACC Strategic Plan for Autism Research, Services, and Policy. 2023. https://iacc.hhs.gov/publications/strategic-plan/2023/ [Google Scholar]
  • 3.Braveman P, Dekker M, Sadegh-Nobari T, Pollack C. How Does Housing Affect Health? An examination of the many ways in which housing can influence health and strategies to improve health through emphasis on healthier homes. Vol. 7. 2011:9. https://www.rwjf.org/en/library/research/2011/05/housing-and-health.html [Google Scholar]
  • 4.D’Alessandro D, Appolloni L. Housing and health: an overview. Ann Ig. 2020;32(5 Supple 1):17. doi: 10.7416/ai.2020.3391 [DOI] [PubMed] [Google Scholar]
  • 5.Burns SP, Mendonca R, Pickens ND, Smith RO. America’s housing affordability crisis: perpetuating disparities among people with disability. Disabil Soc. 2021;36(10):1719–1724. doi: 10.1080/09687599.2021.1960276 [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 6.Brucker DL, Helms V, Souza T. Health and Health Services Access Among Adults With Disabilities Who Receive Federal Housing Assistance. Hous Policy Debate. 2018;28(2):248–266. doi: 10.1080/10511482.2017.1357048 [DOI] [Google Scholar]
  • 7.Singh A, Daniel L, Baker E, Bentley R. Housing Disadvantage and Poor Mental Health: A Systematic Review. Am J Prev Med. 2019;57(2):262–272. doi: 10.1016/j.amepre.2019.03.018 [DOI] [PubMed] [Google Scholar]
  • 8.Hollocks MJ, Lerh JW, Magiati I, Meiser-Stedman R, Brugha TS. Anxiety and depression in adults with autism spectrum disorder: a systematic review and meta-analysis. Psychol Med. Mar 2019;49(4):559–572. doi: 10.1017/S0033291718002283 [DOI] [PubMed] [Google Scholar]
  • 9.Malone KM, Pearson JN, Palazzo KN, Manns LD, Rivera AQ, Mason Martin DL. The Scholarly Neglect of Black Autistic Adults in Autism Research. Autism Adulthood. Dec 01 2022;4(4):271–280. doi: 10.1089/aut.2021.0086 [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 10.Schott W, Tao S, Shea L. Co-occurring conditions and racial-ethnic disparities: Medicaid enrolled adults on the autism spectrum. Autism Res. Jan 2022;15(1):70–85. doi: 10.1002/aur.2644 [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 11.Benevides TW, Carretta HJ, Rust G, Shea L. Racial and ethnic disparities in benefits eligibility and spending among adults on the autism spectrum: A cohort study using the Medicare Medicaid Linked Enrollees Analytic Data Source. PLoS One. 2021;16(5):e0251353. doi: 10.1371/journal.pone.0251353 [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 12.Koffer Miller KH, Cooper DS, Ventimiglia JC, Shea LL. Feeling intimidated and uncomfortable: Established and exacerbated educational inequities experienced by black parents of autistic children. Autism Res. May 2023;16(5):1040–1051. doi: 10.1002/aur.2919 [DOI] [PubMed] [Google Scholar]
  • 13.Roux AM, Voltaire S, Steinberg H, et al. More Than Just a Variable: The Need to Explicitly Focus on Black Youth Within Autism Transitions Research. Autism Adulthood. Jun 2024;6(2):119–127. doi: 10.1089/aut.2023.0041 [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 14.Centers for Medicare & Medicaid Services. Chronic Conditions Warehouse. https://www2.ccwdata.org/web/guest [Google Scholar]
  • 15.Roux AM, Rast JE, Anderson KA, Shattuck PT. National Autism Indicators Report: Developmental Disability Services and Outcomes in Adulthood. 2017. [Google Scholar]
  • 16.Garrison V, Bachand J, Zhang C, Cox C, Golden C, Lochner K. The Health Status of Women and Children Living in Public and Assisted Housing: Linkage of the National Health Interview Survey to U.S. Department of Housing and Urban Development Administrative Data. Cityscape: A Journal of Policy Development and Research. 2024;26(1) [PMC free article] [PubMed] [Google Scholar]
  • 17.Roux AM, Miller KK, Tao S, et al. Unrealized Cross-System Opportunities to Improve Employment and Employment-Related Services Among Autistic Individuals. Milbank Q. Aug 01 2023; doi: 10.1111/1468-0009.12666 [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 18.Georgians for a Healthy Future. Realizing the Promise of Olmstead: A housing study & policy recommendations. 2023:43. https://healthyfuturega.org/ghf_resource/housing-report-2023/ [Google Scholar]
  • 19.Ou JY, Peters JL, Levy JI, Bongiovanni R, Rossini A, Scammell MK. Self-rated health and its association with perceived environmental hazards, the social environment, and cultural stressors in an environmental justice population. BMC Public Health. Aug 03 2018;18(1):970. doi: 10.1186/s12889-018-5797-7 [DOI] [PMC free article] [PubMed] [Google Scholar]

Decision Letter 0

Edward Chiyaka

4 Oct 2024

PONE-D-24-33807Colliding Public Health Priorities: A Call to Improve the Understanding of Autistic Individuals Utilizing Housing AssistancePLOS ONE

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Reviewer #1: This well written study focused on people with autism receiving HUD housing assistance. By connecting medicaid claim data and HUD data, the authors were able to explore the topic in detail.

As this paper is concise, well written, and of descriptive nature, I only have minor comments:

1. Some readers might not be familiar with various housing assistance programs provided via HUD, a brief intro on those programs can be very helpful.

2. I am not familiar with both datasets used in the study. I was wondering are there cases, if so, how many, are. people within the same household receiving HUD support?

3 I appreciate that the authors' statement on racial minority individuals were over-represented in the HUD assistance system signaling higher needs among this population. However, some may argue that this finding may indicate access of housing assistance among racial minorities, which counter the housing prioritization and allocation disparities faced by racial minorities identified from community stakeholders and research. I was wondering how would the authors address this concerns.

4. I appreciate the preemptive efforts suggested by the authors. I was wondering if the authors could discuss further what such interventions would look like and if there are existing models that the authors would recommend?

Reviewer #2: This paper examines the utilization of Housing and Urban Development (HUD) housing support for individuals with autism. This paper used Medicaid data from 2008 and 2016 and identified autistic individuals to then link them to national HUD data. Variables included demographic characteristic, co-occurring conditions, and HUD program involvement. I was hoping to see more variables (e.g., other disabilities and/or psychological disorders) included into this paper as part of co-occurring conditions. Overall, this paper examines a very important topic (i.e., role of housing assistance for autistic individuals) and has merit. I think this is a good start to begin discussions about HUD assistance for autistic individuals, particularly those who are underserved (homeless individuals and people of color). This paper can contribute good information to the roles that Medicaid benefits and HUD-assistance play in the health and mental outcomes within the developmental trajectories of individuals with autism.

Details:

Abstract

Line 48—HUD should be spelled since it is first mention.

Line 51—HUD should not be spelled out here but rather in line 48.

Introduction

Although the authors do a good job in highlighting the health and mental health outcomes (lines 77-78) within the autistic population, it would be helpful to add a few sentences pertaining specifically to mental and health outcomes (e.g., discrimination and racism) among marginalized individuals and/or people of color with autism (see Malone et al. 2022).

Can the authors include a few sentences to include autism spectrum symptoms (e.g., deficits in social communication and social interaction across multiple contexts)?

Can the authors include a few sentences that includes HUD eligibility? Eligibility may vary across states, but it would be important to include general eligibility criteria (e.g., low-income disabilities, U.S. citizens or eligible immigration status).

Page 2 first paragraph (line 68)—Can the authors provide citations for the “segregated datasets” they are alluding to?

Materials and Methods

Can the authors briefly clarify who developed the algorithm and how it developed? If necessary, please cite frameworks and/or previous studies from the research literature that contributed to the development of the algorithm.

Can the authors clarify in this section how they define co-occurring conditions?

Results

Page 4 second paragraph (line 125-126). If these data are available, can the authors include data pertaining to HUD-assisted individuals from other ethnoracial populations (e.g. Hispanic/Latinos, Native Americans, Asians)?

Discussion

Can the authors elaborate on the finding that 72.2% of HUD-assisted autistic were children under age 18. Why do the authors think this was the case and what are the practical implications of this?

Page 5 paragraph 2 (lines 145-145). Can the authors add statistics pertaining to homeless autistic individuals in the U.S.?

Page 5 paragraph 2 (lines 152-153). “…including increased exposure to environmental and social stressors that exacerbate health disparities.” Please add citations.

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Reviewer #1: No

Reviewer #2: No

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PLoS One. 2024 Dec 20;19(12):e0315008. doi: 10.1371/journal.pone.0315008.r002

Author response to Decision Letter 0

7 Nov 2024

November 6, 2024

Dear Dr. Chiyaka and reviewers,

Thank you to Plos One for considering publication of our manuscript “Colliding Public Health Priorities: A Call to Improve the Understanding of Autistic Individuals Utilizing Housing Assistance" (PONE-D024-33807).” We are thrilled to hear of the overall positive review and potential publication.

Please find the revised manuscript attached with changes detailed in the table below. We feel that the thorough feedback from the reviewers helped us to improve the overall quality of this study and the manuscript.

Responses to Reviewer Feedback (RA-19-03-544)

Editor

Topic/Section Reviewer comment Response Action Taken

Keywords It seems that your current keywords, such as "disability" and "policy," do not align with the content of your article, as these terms are not mentioned anywhere in the text. Remember, your keywords should accurately reflect the central themes of your research and make your article more discoverable online. Consider revising your keywords to better describe the scope and findings of your study, ensuring they help people find your work when conducting relevant searches.

Agreed Revised key words to: autism, housing, Medicaid

Role of Funder Please state what role the funders took in the study. If the funders had no role, please state: ""The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.""

If this statement is not correct you must amend it as needed.

Please include this amended Role of Funder statement in your cover letter; we will change the online submission form on your behalf.

Updated We have added the following statement to our acknowledgements: “The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript."

Competing Interests Add a competing interests statement Agreed Added: "The authors have declared that no competing interests exist."

Data Availability Statement Please note that your Data Availability Statement is currently missing contact details for the third party, such as an email address or a link to where data requests can be made. Completed We have added detail and the web link to the data center that manages CMS data requests.

Authors Amend the manuscript submission data (via Edit Submission) to include author Dr. Wei-Lin Lee Completed Wei-Lin Lee has been added to the author list in the manuscript submission data.

Ethics Statement In your statement, please include the full name of the IRB or ethics committee who approved or waived your study, as well as whether or not you obtained informed written or verbal consent. If consent was waived for your study, please include this information in your statement as well Completed Added to the Methods as requested

Tables/Files Please include your tables as part of your main manuscript and remove the individual files. Please note that supplementary tables (should remain/ be uploaded) as separate ""supporting information"" files.

Please ensure that you refer to Table 1 in your text Completed Added reference to Table 1 in the Results section and placed Table 1 after the first paragraph in which it is mentioned.

Captions Please include captions for your Supporting Information files at the end of your manuscript, and update any in-text citations to match accordingly. We have added information to the end of the manuscript.

Citations Please review your reference list to ensure that it is complete and correct. If you have cited papers that have been retracted, please include the rationale for doing so in the manuscript text, or remove these references and replace them with relevant current references. Any changes to the reference list should be mentioned in the rebuttal letter that accompanies your revised manuscript. Completed Completed

Reviewer 1

Reviewer #1: This well written study focused on people with autism receiving HUD housing assistance. By connecting medicaid claim data and HUD data, the authors were able to explore the topic in detail.

As this paper is concise, well written, and of descriptive nature, I only have minor comments.

Topic/Section Reviewer comment Response Action Taken

Introduction Some readers might not be familiar with various housing assistance programs provided via HUD, a brief intro on those programs can be very helpful. Agreed We have added text about HUD programs to the introduction.

Introduction I am not familiar with both datasets used in the study. I was wondering are there cases, if so, how many, are. people within the same household receiving HUD support?

Agreed We have added the number of individuals in the same household to the Results section.

Discussion? I appreciate that the authors' statement on racial minority individuals were over-represented in the HUD assistance system signaling higher needs among this population. However, some may argue that this finding may indicate access of housing assistance among racial minorities, which counter the housing prioritization and allocation disparities faced by racial minorities identified from community stakeholders and research. I was wondering how would the authors address this concerns.

This is an important comment and consideration. We sought in our text to denote increased exposure to disadvantages among racial minority individuals. We agree that access is likely a key consideration. We have added text to the statement in the discussion to underscore that barriers to service access is an additional potential factor exacerbating health inequities.

Discussion I appreciate the preemptive efforts suggested by the authors. I was wondering if the authors could discuss further what such interventions would look like and if there are existing models that the authors would recommend?

There is a limited evidence base to build upon for intervention opportunities. We believe that an existing gap in the field of autism research and practice that should including housing considerations and does not adequately do so currently includes assessment and service planning tools. We have added text to address.

Reviewer 2

Reviewer #2: This paper examines the utilization of Housing and Urban Development (HUD) housing support for individuals with autism. This paper used Medicaid data from 2008 and 2016 and identified autistic individuals to then link them to national HUD data. Variables included demographic characteristic, co-occurring conditions, and HUD program involvement. I was hoping to see more variables (e.g., other disabilities and/or psychological disorders) included into this paper as part of co-occurring conditions. Overall, this paper examines a very important topic (i.e., role of housing assistance for autistic individuals) and has merit. I think this is a good start to begin discussions about HUD assistance for autistic individuals, particularly those who are underserved (homeless individuals and people of color). This paper can contribute good information to the roles that Medicaid benefits and HUD-assistance play in the health and mental outcomes within the developmental trajectories of individuals with autism.

Topic/Section Reviewer comment Response Action Taken

Abstract Spell out HUD name in first mention

Agree Corrected

Introduction Although the authors do a good job in highlighting the health and mental health outcomes (lines 77-78) within the autistic population, it would be helpful to add a few sentences pertaining specifically to mental and health outcomes (e.g., discrimination and racism) among marginalized individuals and/or people of color with autism (see Malone et al. 2022).

Agree We have added text to denote the presence and outline characteristics of these outcomes among individuals and people of color with autism.

Introduction Can the authors include a few sentences to include autism spectrum symptoms (e.g., deficits in social communication and social interaction across multiple contexts)?

Agreed We have added text to indicate the symptoms in from the reviewer comment.

Introduction Can the authors include a few sentences that includes HUD eligibility? Eligibility may vary across states, but it would be important to include general eligibility criteria (e.g., low-income disabilities, U.S. citizens or eligible immigration status). Agreed We have added text to describe HUD eligibility criteria, which does not vary by state since HUD is federally administered.

Introduction Page 2 first paragraph (line 68)—Can the authors provide citations for the “segregated datasets” they are alluding to? Agreed We have modified text to detail that data reflect the siloed systems from which they are generated.

Methods Can the authors briefly clarify who developed the algorithm and how it developed? If necessary, please cite frameworks and/or previous studies from the research literature that contributed to the development of the algorithm.

Agreed We have added text to indicate the location and ownership of the algorithms, including a cited link to the source for user documentation.

Methods Can the authors clarify in this section how they define co-occurring conditions?

Agreed We have specified the source of the algorithm.

Results Page 4 second paragraph (line 125-126). If these data are available, can the authors include data pertaining to HUD-assisted individuals from other ethnoracial populations (e.g. Hispanic/Latinos, Native Americans, Asians)?

Agreed We have added a reference to Table 1 in this section for the full distribution of ethnoracial populations.

Discussion Can the authors elaborate on the finding that 72.2% of HUD-assisted autistic were children under age 18. Why do the authors think this was the case and what are the practical implications of this?

Thank you for this question. The disproportionate rate of children may point to lack of capacity to serve autistic adults, as seen in other systems. We added text and a citation to address this point.

Discussion Page 5 paragraph 2 (lines 145-145). Can the authors add statistics pertaining to homeless autistic individuals in the U.S.?

n/a There are no reliable published statistics on this population.

Discussion Page 5 paragraph 2 (lines 152-153). “…including increased exposure to environmental and social stressors that exacerbate health disparities.” Please add citations.

Addressed Added a citation for this fact.

Decision Letter 1

Edward Chiyaka

20 Nov 2024

Colliding Public Health Priorities: A Call to Improve the Understanding of Autistic Individuals Utilizing Housing Assistance

PONE-D-24-33807R1

Dear Dr. Shea,

We’re pleased to inform you that your manuscript has been judged scientifically suitable for publication and will be formally accepted for publication once it meets all outstanding technical requirements.

Within one week, you’ll receive an e-mail detailing the required amendments. When these have been addressed, you’ll receive a formal acceptance letter and your manuscript will be scheduled for publication.

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Kind regards,

Edward Chiyaka, Ph.D., MSc

Academic Editor

PLOS ONE

Additional Editor Comments (optional):

Reviewers' comments:

Acceptance letter

Edward Chiyaka

9 Dec 2024

PONE-D-24-33807R1

PLOS ONE

Dear Dr. Shea,

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on behalf of

Dr. Edward Chiyaka

Academic Editor

PLOS ONE

Associated Data

    This section collects any data citations, data availability statements, or supplementary materials included in this article.

    Data Availability Statement

    Medicaid claims data are governed by the Centers for Medicare and Medicaid Services (CMS). Data requests to CMS are processed by the Research Data Assistance Center (ResDAC) found at: https://resdac.org/.

    Articles from PLOS ONE are provided here courtesy of PLOS

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