A Second Report Reveals Youth with Intellectual Disabilities and Their Caregivers Need Greater Education on Diverse Topics of Sexuality 

New York – Just in time for back-to-school season, the second and latest article based-on research has been published by the Sexual Health Innovation Network for Equitable Education also known as Project SHINE - a multidisciplinary network of intellectual disability experts, self-advocates, and sexual andreproductive health education professionals, including Planned Parenthood of Greater New York (PPGNY). 

PPGNY conducted this research study as part of the Project SHINE collaborative, which aims to create innovative educational materials and approaches that youth, and their families want and deserve. The first peer reviewed journal article from Project SHINE utilized survey data from 632 disability support professionals examined current communication practices, attitudes, and needs related to sexual and reproductive health education for adolescents and young adults with ID. This second peer reviewed journal article focuses on data that was collected from focus groups with youth (ages 16-24) and parents.  

An existing literature review of the field demonstrated that youth with intellectual disabilities (ID) are less likely than youth without ID to engage in safer sex practices and in turn are at increased risk for sexually transmitted infections (STIs) and unintended pregnancy. A key driver for inequities in sexual health outcomes for youth with and without ID is a lack of access to suitable sexual health information, education, and care. This research study found that professionals and parents/caregivers commonly hold the erroneous belief that youth with intellectual disabilities are not sexual, which has led to inequitable access to fact-based, developmentally appropriate sex education for young people with ID.  

This is the second peer reviewed journal article based on research published by Project SHINE. The first peer reviewed journal article was focused on the overall need for SRH education for youth with ID and necessary practices for professionals working with youth with ID to support youth SRH education, while the latest peer reviewed journal article focuses on youth and parent perspectives about SRH education for youth with ID.  

You can find the first peer reviewed journal article from Project SHINE here.  

Key findings of the second report include: 

• Youth and parents are interested in learning about similar sexuality topics/themes including, anatomy, puberty, consent, boundaries, dating and relationship safety. 
• Educational tools with visuals, games, scenarios/storytelling and/or hands-on components are desired for group and individual learning. 
• Parents want to be educated on various sexuality topics impacting youth with disabilities, including sexual orientation, gender identity, and gender expression, including transgender and nonbinary identities; along with the social-emotional aspects of sexuality, anatomy, and reproduction. 
• Spanish speaking parents with Limited English Proficiency (LEP) want more educational resources in Spanish, including written resources and in-person services. 

Statement by Marisol Getchius - Project SHINE Design Collective Member and Regional Organizer at SANYS-LI:

As a Design Collective Partner, I love working with the youth and I'm in awe of the collaborations of different organizations. The Sexual Reproductive Health Toolkit is so needed for youth with developmental disabilities/intellectual disabilities. As a woman with a developmental disability, I only wish I had Project SHINE when I was a youth. I can't wait to see where the Youth Ambassadors take Project SHINE as the next generation of self-advocates take the reins.

The rich findings of the Project SHINE report will inform the creation of an online, multi-modal education and health services toolkit for youth with intellectual and developmental disabilities ages 16-24, and the people who support them. The first edition of the toolkit will be available later this year. The project described is supported by grant number 1 TP2AH000068-01-00 from the HHS Office of Population Affairs. Contents are solely the responsibility of the authors and do not necessarily represent the official views of the Department of Health and Human Services or the Office of Population Affairs. 

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About Planned Parenthood of Greater New York:   

Planned Parenthood of Greater New York (PPGNY) is a leading provider, educator, and advocate of sexual and reproductive health care in New York State. PPGNY offers a wide range of sexual and reproductive health services at its 23 health centers across 65% of New York State. PPGNY is a trusted source of medically accurate, evidence-based information that allows people to make informed decisions about their health and future. As a voice for reproductive freedom, PPGNY supports legislation and policies that ensure all New Yorkers have access to the full range of reproductive health services and education.