In 2014, the U.S. Centers for Medicare & Medicaid Services (CMS) launched the Home and Community-Based Services (HCBS) Final Rule intended to improve the quality of HCBS for people with disabilities. The Rule focuses on improving outcomes through person-centered services and supports. These outcomes include privacy and dignity. This study reviewed state compliance with the Final Rule by examining statewide transition plans and investigating the Final Rule’s impact on privacy outcomes of adults with intellectual and developmental disabilities (IDD). We compared cross-sectional National Core Indicators® (NCI®) Adult Consumer Survey (ACS) 2012 to 2013 and Adult In-Person Survey (IPS) 2018 to 2019 data. Privacy (people letting them know before entering their home; being alone with friends/visitors at home) increased after Final Rule implementation. Individuals in the 2018 to 2019 group had 36% and 29% higher odds of being asked for permission to enter their home and of being alone with friends/guests, respectively. Age, gender, severity of intellectual disability, and several co-occurring conditions were also predictive of improvement in privacy.
The Arc. (2014). The 2014 Federal Home and Community-based services regulation: What you need to know. The Arc of the United States.
3.
BrandD.DiGennaro ReedF. D.MorleyM. D.ErathT. G.NovakM. D. (2019). A survey assessing privacy concerns of smart-home services provided to individuals with disabilities. Behavior Analysis in Practice, 13(1), 11–21. https://doi.org/10.1007/s40617-018-00329-y
ChalghoumiH.CobigoV.DignardC.Gauthier-BeaupréA. (2019). Information privacy for technology users with intellectual and developmental disabilities: Why does it matter?Ethics & Behavior, 29(3), 201–217. https://doi.org/10.1080/10508422.2017.1393340
6.
CharitouM.QuayleE.SutherlandA. (2021). Supporting adults with intellectual disabilities with relationships and sex: A systematic review and thematic synthesis of qualitative research with staff. Sexuality and Disability, 39, 113–146. https://doi.org/10.1007/s11195-020-09646-z
7.
ConradJ. A. (2020). On intellectual and developmental disabilities in the United States: A historical perspective. Journal of Intellectual Disabilities, 24(1), 85–101. https://doi.org/10.1177/1744629518767001
8.
EvansD. S.McGuireB. E.HealyE.CarleyS. N. (2009). Sexuality and personal relationships for people with an intellectual disability. Part II: Staff and family carer perspectives. Journal of Intellectual Disability Research, 53, 913–921. https://doi.org/10.1111/j.1365-2788.2009.01202.x
FriedmanC. (2020). The impact of Home and Community Based Settings (HCBS) Final Settings Rule outcomes on health and safety. Intellectual and Developmental Disabilities, 58(6), 486–498. https://doi.org/10.1352/1934-9556-58.6.486
11.
GinsburgR. B. & Supreme Court of the United States. (1998). U.S. reports: Olmstead v. L.C., 527 U.S. 581 [Periodical]. The Library of Congress. https://www.loc.gov/item/usrep527581/
12.
HarrisJ. E. (2020). The privacy problem in disability antidiscrimination law. In CohenI.ShacharC.SilversA.SteinM. (Eds.), Disability, health, law, and bioethics (pp. 159–170). Cambridge University Press. https://doi.org/10.1017/9781108622851.018
13.
HollomotzA. (2008). “May we please have sex tonight?” People with learning difficulties pursuing privacy in residential group settings. British Journal of Learning Disabilities, 37(2), 91–97. https://doi.org/10.1111/j.1468-3156.2008.00512.x
14.
LongC. R.AverillJ. R. (2003). Solitude: An exploration of benefits of being alone. Journal for the Theory of Social Behaviour, 33(1), 21–44. https://doi.org/10.1111/1468-5914.00204
15.
McCarronM.Lombard-VanceR.MurphyE.MayP.WebbN.SheafG.McCallionP.StancliffeR.NormandC.SmithV.O’DonovanM.-A. (2019). Effect of deinstitutionalisation on quality of life for adults with intellectual disabilities: A systematic review. BMJ Open, 9, e025735. https://doi.org/10.1136/bmjopen-2018-025735
ProhnS. M.DinoraP.BrodaM. D.BogenschutzM.LineberryS. (2022). Measuring four personal opportunities for adults with intellectual and developmental disabilities. Inclusion, 10(1), 19–34. https://doi.org/10.1352/2326-6988-10.1.19
21.
RaoJ. N. K.ScottA. J. (1984). On chi-squared tests for multiway contingency tables with cell proportions estimated from survey data. Annals of Statistics, 12(1), 46–60. https://doi.org/10.1214/aos/1176346391
22.
RiesenT.SnyderA. (2019). A guide to the Home- and Community-Based Services (HCBS) final settings rule. Center for Persons with Disabilities, Utah State University.
StancliffeR. J.PettingellS. L.BershadskyJ.HouseworthJ.TicháR. (2022). Community participation and staying home if you want: US adults with intellectual and developmental disabilities. Journal of Applied Research in Intellectual Disabilities, 35(5), 1199–1207. https://doi.org/10.1111/jar.13014
26.
Stata Corporation. (2015a). Stata Statistical Software (Version 14) [Computer software].
27.
Stata Corporation. (2015b). Stata survey data reference manual: Release 14. Stata Press.
28.
Tuffrey-WijneI.BernalJ.HollinsS. (2010). Disclosure and understanding of cancer diagnosis and prognosis for people with intellectual disabilities: Findings from an ethnographic study. European Journal of Oncology Nursing, 14, 224–230. https://doi.org/10.1016/j.ejon.2010.01.021
29.
Tuffrey-WijneI.GiatrasN.ButlerG.CresswellA.MannersP.BernaJ. (2013). Developing guidelines for disclosure or non-disclosure of bad news around life-limiting illness and death to people with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities, 26, 231–242. https://doi.org/10.1111/jar.12026
30.
United Nations. (2006). Convention on the rights of persons with disabilities. Treaty Series, 2515, 3.
31.
WieselI.BigbyC.KamstraP.FarmerJ. (2020). Possibility and risk in encounter between people with and without intellectual disability. Journal of Intellectual & Developmental Disability, 46(1), 35–44. https://doi.org/10.3109/13668250.2020.1837606
