By Carli Friedman, CQL Director of Research
The World Health Organization (2006) considers sexuality “a central part of being human.” However, people with intellectual and developmental disabilities (IDD) are often denied romantic and sexual opportunities because they are portrayed as not capable or interested in intimate romantic relationships. If people with IDD’s sexuality is discussed, it is most often in the case of deviant behaviors or victimization. This is reflected in the lack of sexuality education people with IDD receive as well as a lack of policies promoting their sexual identities. Countering these narratives, self-advocates with IDD have voiced their interest in sexuality, and their identities as sexual beings with choice and agency (Azzopardi-Lane & Callus, 2014; Fitzgerald & Withers, 2011; Friedman et al., 2014; Swango-Wilson, 2010).
Medicaid Home and Community Based Services (HCBS) waivers aim to ensure recipients have “full access to the benefits of community living” (Medicaid Program, 2014) to the same degree as nondisabled people. As such, sexuality services should be offered to people with IDD in Medicaid HCBS waivers. This is especially pertinent as Medicaid HCBS waivers are the largest providers of long term services and supports (LTSS) for people with IDD (Braddock et al., 2015). For this reason, the purpose of this study conducted by CQL | The Council on Quality and Leadership was to explore if and how Medicaid HCBS waivers across the nation offer sexual health services to people with IDD. To do so, this study examined 111 fiscal year (FY) 2015 HCBS IDD waivers from the Centers for Medicare and Medicaid Services (CMS) to determine if, and how, they provided any type of sexual health service.
Our findings revealed only 7 states – Colorado, New Mexico, Pennsylvania, Tennessee, Utah, Virginia, and Washington – and the District of Columbia offered any type of sexual health service in FY 2015. The types of sexual health services offered by waivers fell into two categories: reactive services, and proactive services. Reactive services took a more negative view of sexual health that considered sex dangerous and to be avoided; these services only aimed at preventing or stopping sexually inappropriate behaviors. Meanwhile, proactive services promoted sexuality as a healthy aspect of adulthood, and assumed people with IDD may want to be sexually active; therefore, these services provided education and awareness about reproduction, safe sex, relationships, and victimization avoidance.
Type of Sexual Health Services Provided (n = 37)
Of the 37 sexuality services provided by the seven states and D.C., the overwhelming majority were reactive services. The emphasis on reactive services rather than a balance of reactive and proactive services “reveals an understanding of people with IDD’s sexuality as mostly deviant, rather than viewing sexuality as a natural part of all people’s experiences” (Friedman & Owen, 2017, p. 17).
HCBS waivers are a perfect vehicle to provide sexuality services for people with IDD. Yet, the lack of service provision across the nation, as well as the emphasis on reactive services rather than more holistic sexual health services, reveals a limited understanding of the sexuality of people with IDD. States are not recognizing sexuality as a potential aspect of identity for people with IDD, or as an important aspect of community living for waiver participants.
When looking for examples of proactive sexuality services, New Mexico’s ‘Socialization and Sexuality Education’ waiver service may be particularly useful. The training classes, which utilize a train-the-trainer approach, address a continuum of needs, including sexuality education, friendship and relationships, safety, and skill-building. The overall goal of proactive sexuality services is to promote the best outcomes for individuals.
- Azzopardi-Lane, C., & Callus, A. (2014). Constructing sexual identities: People with intellectual disability talking about sexuality. British Journal of Learning Disabilities, 43(1), 32-37. doi:10.1111/bld.12083
- Braddock, D., Hemp, R., Rizzolo, M. C., Tanis, E. S., Haffer, L., & Wu, J. (2015). The state of the states in intellectual and developmental disabilities: Emerging from the great recession. Washington, DC: The American Association on Intellectual and Developmental Disabilities.
- Fitzgerald, C., & Withers, P. (2011). ‘I don’t know what a proper woman means’: What women with intellectual disabilities think about sex, sexuality and themselves. British Journal of Learning Disabilities, 41(1), 5-12.
- Friedman, C., Arnold, C. K., Owen, A. L., & Sandman, L. (2014). “Remember our voices are our tools:” Sexual self-advocacy as defined by people with intellectual and developmental disabilities. Sexuality & Disability, 32(4), 515-532. doi:10.1007/s11195-014-9377-1
- Friedman, C. & Owen, A. L. (2017). Sexual health in the community: Services for people with intellectual and developmental disabilities. Disability and Health Journal, 10(3), 387–393. http://dx.doi.org/10.1016/j.dhjo.2017.02.008
- Medicaid Program; State Plan Home and Community-Based Services, 5-Year Period for Waivers, Provider Payment Reassignment, and Home and Community-Based Setting Requirements for Community First Choice and Home and Community-Based Services (HCBS) Waivers, 79 Fed. Reg. 2947 (January 10, 2014) (to be codified at 42 C. F. R. pts. 430, 431, 435, 436, 440, 441, 447).
- Swango-Wilson, A. (2010). Systems theory and the development of sexual identity for individuals with intellectual/developmental disability. Sexuality & Disability, 28(3), 157-164.
- World Health Organization. (2006). Defining sexual health: report of a technical consultation on sexual health. Geneva: World Health Organization.
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