New Report Reveals Youth with Intellectual Disabilities and Their Caregivers Lack Resources to Communicate about Sexual Health Care

New York – A new report published by Project SHINE, a multidisciplinary network of intellectual disability experts and self-advocates led by Planned Parenthood of Greater New York, reveals that licensed professionals, parents, and caregivers lack suitable tools and methods to communicate with youth with Intellectual and developmental disabilities (ID) about sexual and reproductive health, sexuality, and consent. Research shows youth with 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 access to suitable sexual health information, education, and care. 

The study, which utilized survey data from 632 disability support professionals and focus groups, examined current communication practices, attitudes, and needs related to sexual and reproductive health education for adolescents and young adults with ID. The 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.  

Other key findings include: 

• Providers require specialized training in evidence-based, unbiased sexual and reproductive health education for youth with ID. 

• Providers lack awareness of medically accurate sexual health information and tools that they could use in their work. 

• Mixed opinions about who should be responsible for talking with youth about sexual and reproductive health. While some respondents believed that everyone should be trained and able to provide sexual health information, others believed that only specific professionals (e.g., sex educators and medical providers) should have it within their job role to do so. 

• Providers and parents/caregivers overwhelmingly expressed the need for accessible teaching tools, with videos and hands-on toolkits.  

Statement by Giokazta Molina-Schneider - Vice President of Education and Training, Planned Parenthood of Greater New York: 

At a time when the sexual and reproductive health of everyone is under attack, this new report by Project SHINE will make all the difference for the life and future of youth with intellectual and developmental disabilities. It is imperative that all of us in the reproductive health field listen to the wishes of youth with ID and prioritize their needs for more education and autonomy when it comes to their sexuality. By educating youth with disabilities about safe sex, prevention, consent, and treatment not only are we honoring their humanity, we are also taking monumental steps toward achieving reproductive justice for all. 

Statement by Kathleen Downes, LMSW - Contributor, Project SHINE Real Stories Council Member, Planned Parenthood of Greater New York Advisory Council on Accessible Sex Education: 

Comprehensive sex education and reproductive health services must include people with disabilities, who have long been overlooked and silenced in these discussions. As a woman with cerebral palsy and multiple chronic pain conditions, I feel encouraged by the release of this new and necessary research in service of positive change. There is still much work to be done but it is my hope that we can build upon the remarkable progress made by so many dedicated people with disabilities and their allies in creating safe, dignified, and accessible resources for everyone. We must work together to break down the physical, attitudinal, and financial barriers that have allowed ableism to persist in the sexual and reproductive health field. Change won’t happen overnight but causes worth fighting for rarely have quick fixes. If we stay committed and refuse to let cynicism lead us astray, the future we envision can be ours.

The rich findings of the Project SHINE report will inform the creation of a 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.  

### 

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.