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Supporting People with Intellectual and Developmental Disabilities in Their Adult Aspiration for Sexual Relationships and Parenthood

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Abstract

Introduction

Despite the emphasis on the rights of adults with intellectual and developmental disabilities (IDD) to live a full and meaningful life, many do not get the opportunity to experience sexual relationships and parenthood. Parents and service providers are key sources of support for adults with IDD. The aim of the current study was to examine their attitudes and role perceptions in order to suggest a framework through which to provide optimal support for sexual relationships and parenthood.

Method

The study employed qualitative analysis of interviews with 30 parents of adults with IDD and 40 service providers. Data was collected during 2018 and 2019.

Results

Findings demonstrated that parents and service providers provided partial support in regard to the sexuality of adults with IDD, and expressed reservations and concerns. Service providers focused on the goal of teaching skills related to sexuality and protection against harm. Parents wanted to transfer the responsibility for this issue to service providers. Concerning parenting, service providers and parents held negative attitudes.

Conclusions

The findings indicated a complex picture of conflicting and disorganized attitudes, by parents and service providers. Along with the recognition of rights, there are also concerns, reservations, and even objections.

Social Policy Implications

The current study proposes that adults with IDD should be provided with holistic support, in which sexuality and parenthood are included as part of the components that are pertinent to leading a meaningful life in adulthood.

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Data Availability

Data was collected anonymously. The full interviews are confidential.

References

  • Abbott, S., & McConkey, R. (2006). The barriers to social inclusion as perceived by people with intellectual disabilities. Journal of Intellectual Disabilities, 10(3), 275–287.

    Article  PubMed  Google Scholar 

  • Bigby, C., Douglas, J., Carney, T., Then, S.-N., Wiesel, I., & Smith, E. (2017). Delivering decision-making support to people with cognitive disability—What has been learned from pilot programs in Australia from 2010 to 2015. Australian Journal of Social Issues, 52(3), 222–240.

    Article  Google Scholar 

  • Bigby, C., Whiteside, M., & Douglas, J. (2019). Providing support for decision making to adults with intellectual disability: Perspectives of family members and workers in disability support services. Journal of Intellectual & Developmental Disability, 44(4), 396–409.

    Article  Google Scholar 

  • Booth, T. (2000). Parents with learning difficulties, child protection and the courts. Representing Children, 13(3), 175–188.

    Google Scholar 

  • Booth, T., & Booth, W. (2004). Findings from a court study of care proceedings involving parents with intellectual disabilities. Journal of Policy and Practice in Intellectual Disabilities, 1(3–4), 179–181.

    Article  Google Scholar 

  • Brantlinger, E., Jimenez, R., Klingner, J., Pugach, M., & Richardson, V. (2005). Qualitative studies in special education. Exceptional Children, 71, 195–207.

    Article  Google Scholar 

  • Brown, R. D., & Pirtle, T. (2008). Beliefs of professional and family caregivers about the sexuality of individuals with intellectual disabilities: Examining beliefs using a Q-methodology approach. Sex Education, 8, 59–75.

    Article  Google Scholar 

  • Cuskelly, M., & Bryde, R. (2004). Attitudes towards the sexuality of adults with an intellectual disability: Parents, support staff, and a community sample. Journal of Intellectual and Developmental Disability, 29(3), 255–264.

    Article  Google Scholar 

  • Drew, C. J., & Hardman, M. L. (2004). Mental retardation: A lifespan approach to people with intellectual disabilities. New Jerssey: Merrill Prentice Hall.

    Google Scholar 

  • Esmail, S., Darry, K., Walter, A., & Knupp, H. (2010). Attitudes and perceptions towards disability and sexuality. Disability and Rehabilitation, 32(14), 1148–1155.

    Article  PubMed  Google Scholar 

  • Evans, D. S., McGuire, B. E., Healy, E., & Carley, S. 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.

    Article  PubMed  Google Scholar 

  • Fraley, S., Mona, L., & Theodore, P. (2007). The sexual lives of lesbian, gay, and bisexual people with disabilities: Psychological perspectives. Sexuality Research and Social Policy: Journal of NSRC, 4(1), 15–26.

    Article  Google Scholar 

  • Gambhir, V., & Chadha, N. K. (2013). Psychological experiences of midlife. Indian Journal of Positive Psychology, 4(1), 26–31.

    Google Scholar 

  • Garbutt, R., Boycott-Garnett, R., Tattersall, J., & Dunn, J. (2010). Final Report: Talking about sex and relationships: The views of young people with learning disabilities, Leeds: Change.

  • Gil-Llario, M. D., Morell-Mengual, V., Ballester-Arnal, R., & Díaz-Rodríguez, I. (2018). The experience of sexuality in adults with intellectual disability. Journal of Intellectual Disability Research, 62, 72–80. https://doi.org/10.1111/jir.12455

    Article  PubMed  Google Scholar 

  • Hamilton, C. (2009). ‘Now I’d like to sleep with Rachael’—Researching sexuality support in a service agency group home. Disability & Society, 24, 303–315.

    Article  Google Scholar 

  • Hawkins, R., Redley, M., & Holland, A. J. (2011). Duty of care and autonomy: How support workers managed the tension between protecting service users from risk and promoting their independence in a specialist group home. Journal of Intellectual Disability Research, 55(9), 873–884.

    Article  PubMed  Google Scholar 

  • Haynes, A. (2016). An investigation into parental perceptions about sexuality and children with intellectual disabilities. A Paper in Partial Fulfillment of the Requirements for the Degree of Master of Education in School Counseling. City University of Seattle.

  • Hollomotz, A., & The Speak up Committee. (2008). 'May we please have sex tonight?' - people with learning difficulties pursuing privacy in residential group settings. British Journal of Learning Disabilities, 37, 91–97.

  • Jorgensen, D. L. (1989). Participant observation: A methodology for human studies. London: Sage Publications.

    Book  Google Scholar 

  • Kazukauskas, K. A., & Lam, C. S. (2010). Disability and sexuality: Knowledge, attitudes, and level of comfort among certified rehabilitation. Rehabilitation Counseling Bulletin, 54, 15–25.

    Article  Google Scholar 

  • Kelly, G., Crowley, H., & Hamilton, C. (2009). Rights, sexuality and relationships in Ireland: ‘It’d be kind of nice to be trusted.’ British Journal of Learning Disabilities, 37, 308–315.

    Article  Google Scholar 

  • Kramers-Olen, A. (2016). Sexuality, intellectual disability, and human rights legislation. South African Journal of Psychology, 46(4), 504–516.

    Article  Google Scholar 

  • Lafferty, A., McConkey, R., & Taggart, L. (2013). Beyond friendship: The nature and meaning of close personal relationships as perceived by adults with learning disabilities. Disability & Society, 28(8), 1074–1088.

    Article  Google Scholar 

  • Lyden, M. (2007). Assessment of sexual consent capacity. Sexuality and Disability, 25(1), 3–20.

    Article  Google Scholar 

  • McBrien, J., & Power, M. (2002). Professional attitudes to supporting parents with learning disabilities. Tizard Learning Disability Review, 7(3), 16–22.

    Article  Google Scholar 

  • Natasha, A., & Miriam, T. G. (2017). Pleasure, sex, prohibition, intellectual disability, and dangerous ideas. An International Journal on Sexual and Reproductive Health and Rights, 25, 114–120.

    Google Scholar 

  • Neuman, R. (2019). Attitudes of direct support staff, regarding couples’ relationships of adults with intellectual disabilities: Implications for the provision of supports. Journal of Social Service Research, 46(5), 713–725.

    Article  Google Scholar 

  • Neuman, R. (2020a). The life journeys of adults with intellectual and developmental disabilities: Implications for a new model of holistic supports. Journal of Social Service Research, 1–16. Retrieved from: https://doi.org/10.1080/01488376

  • Neuman, R. (2020b). Parents’ perceptions regarding couple relationships of their adult children with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities, 33(2), 310–320.

    Article  PubMed  Google Scholar 

  • Neuman, R., & Reiter, S. (2017). Couple relationships as perceived by adults with intellectual disability: Implications for quality of life and self-concept. International Journal of Developmental Disabilities, 63(3), 138–147.

    Article  Google Scholar 

  • Pownall, J.D., Jahoda, A., & Hastings, R.P. (2012). Sexuality and sex education of adolescents with intellectual disability: mothers’ perceptions, experiences, and support needs. Intellectual and Developmental Disabilities, 50(2), 140–154.

  • Prilleltensky, O. (2004). Motherhood and disability – Children and choices. Palgrave Macmillan.

    Book  Google Scholar 

  • Rogers, C. (2010). But it’s not all about the sex: Mothering, normalization and young learning disabled people. Disability and Society, 25(1), 63–74.

    Article  Google Scholar 

  • Rushbrooke, E., Murray, C., & Townsend, S. (2014). The experiences of intimate relationships by adults with intellectual disabilities: A qualitative study. Journal of Applied Research in Intellectual Disabilities, 27(6), 531–541.

    Article  PubMed  Google Scholar 

  • Schaaf, N. (2011). Negotiating sexuality in the convention on the rights of persons with disabilities. International Journal on Human Rights, 8(14), 113–131.

    Google Scholar 

  • Schalock, R. L., Bonham, G. S., & Verdugo, M. A. (2008). The conceptualization and measurement of quality of life: Implications for program planning and evaluation in the field of intellectual disabilities. Evaluation and Program Planning, 31(2), 181–190.

    Article  PubMed  Google Scholar 

  • Shildrick, M. (2007). Contested pleasures: The sociopolitical economy of disability and sexuality. Sexuality Research and Social Policy, 4(1), 53–66.

    Article  Google Scholar 

  • Shogren, K. A., Thompson, J. R., Shaw, L. A., Grandfield, E. M., & Hagiwara, M. (2018). Detecting changes in support needs over time. American Journal on Intellectual and Developmental Disabilities, 123(4), 315–328.

    Article  PubMed  Google Scholar 

  • Shuttleworth, R. (2007). Critical research and policy debates in disability and sexuality studies. Sexuality Research and Social Policy, 4(1), 1–14.

    Article  Google Scholar 

  • Sneed, J. R., Whitbourne, S. K., Schwartz, S. J., & Huang, S. (2012). The relationship between identity, intimacy, and midlife well-being: Findings from the Rochester Adult Longitudinal Study. Psychology and Aging, 27(2), 318–323.

    Article  PubMed  Google Scholar 

  • United Nations. (2006). Convention on the rights of persons with disabilities (CRPD): Article 23—Respect for home and the family. Retrieved from https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities/article-23-respect-for-home-and-the-family.html

  • Willis, G. (1991). Phenomenological inquiry: Life world perception. In E. C. Short (Ed.), Forms of curriculum inquiry. (pp. 173–186). State University of New York.

    Google Scholar 

  • Young, R., Gore, N., & McCarthy, M. (2012). Staff attitudes towards sexuality in relation to gender of people with intellectual disability: A qualitative study. Journal of Intellectual & Developmental Disability, 37(4), 343–347.

    Article  Google Scholar 

Download references

Funding

The research was funded by a grant from Zefat Academic College, Israel.

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Authors and Affiliations

  1. Department of Special Education & Department of Social Work, Zefat Academic College, 13206, Zfat, Israel

    Ran Neuman

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  1. Ran Neuman
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Correspondence to Ran Neuman.

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Neuman, R. Supporting People with Intellectual and Developmental Disabilities in Their Adult Aspiration for Sexual Relationships and Parenthood. Sex Res Soc Policy 19, 599–609 (2022). https://doi.org/10.1007/s13178-021-00574-x

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