Project SHINE Launches to Address Inequities in Sexual Health of Youth with Intellectual and Developmental Disabilities Across New York

New program will develop a network of service providers & advocates that work directly with youth with intellectual and developmental disabilities and their caregivers to develop innovative and accessible tools for learning about sexual health 

 

NEW YORK – Today, seven community-based organizations in New York are coming together to announce the launch of a new program, Project SHINE - Sexual Health Innovation Network for Equitable Education with Youth with Intellectual Disabilities.  

The organizations are Planned Parenthood of Greater New York, AHRC New York City, Disability and Aging Justice Clinic at CUNY School of Law, New Alternatives for Children, Self-Advocacy Association of New York State Inc., Sinergia; and YAI. 

Project SHINE envisions a world where youth with intellectual and developmental disabilities (I/DD) have equitable access to high-quality information and affordable health care that promotes informed and supported sexual well-being across their lifespan. With this goal, Project SHINE is developing new and innovative sex education tools for youth with I/DD. 

Project SHINE will develop a multidisciplinary network of service providers that will continuously work to address inequities in the sexual health of youth with intellectual disabilities by ensuring accessible sexuality education and health services for youth with I/DD and the people in their environment. Project SHINE aims to conduct formative research to identify the gaps in the sexuality education and disability fields and develop new and innovative sex education tools and curriculum for youth with I/DD. A diverse advisory board of self-advocates, family members, and professionals will guide this work and ensure an equitable approach to the creation and distribution of programming. YAI will convene and coordinate the 16-member Project SHINE Advisory Board.  

"People with intellectual and developmental disabilities, like all of us, deserve to engage in healthy and fulfilling personal and sexual relationships," says Joy D. Calloway, Interim Chief Executive Officer, Planned Parenthood of Greater New York. "Through comprehensive sexual health education, young people and adults develop the skills needed for sound decision-making, consensual sexual expression, and successfully navigating relationships. Unfortunately, many people with I/DD are not offered sex education because of all-to-common myths and misconceptions. Project SHINE is an innovative project that seeks to address inequities in sexual health care and education for people with I/DD, and their caregivers, by developing accessible sex education tools. Planned Parenthood of Greater New York is proud to collaborate with and learn from a network of experts and self-advocates who are working to create more equitable futures for people with I/DD. Together we will empower people with intellectual and developmental disabilities with the sexual health knowledge they want and deserve." 

“NAC is thrilled to partner with Planned Parenthood of Greater New York on such an important project,” says Cy Orfield, Associate Executive Director, New Alternatives for Children. “Developing a sex education curriculum for individuals with Intellectual Disabilities will positively impact our clients and their families for generations to come.” 

"As people with intellectual and developmental disabilities we have the right to understand our bodies, sexual health, and other parts of sex and sexuality,” says BJ Stasio, President of the Board of Directors of the Self-Advocacy Association of New York State. “Just because we have a developmental disability doesn't mean we don't understand ourselves and our environments. At the Self-Advocacy Association, it is our mission to educate people with I/DD on a wide range of subjects, including sexual health care. We believe everyone should feel empowered to have healthy relationships." 

“The balance between protection and fulfillment of individual autonomy has been problematic for the system designed for providing services to people with developmental disabilities, and we haven’t always done a good job in striking that balance,” says Donald Lash, Executive Director at Sinergia. “Sinergia is pleased to have the opportunity to participate in a project that will develop our capacity to better address the needs and wishes of individuals we serve as adults in the community, and as family members and parents.”  

“Historically, people with intellectual and developmental disabilities have been excluded from any conversations on sex and sexuality. They have been denied the human rights to sexual expression, comprehensive education, and social-sexual support. Education and related services on these topics are fundamental rights,” says Consuelo Senior, Assistant Director of Training at YAI. “I am excited and ecstatic to partner with PPGNY and other Network partners in Project SHINE, to embark on this groundbreaking collaboration to affect needed change. I know that Project SHINE is going to help raise awareness and help to equip people with intellectual disabilities and their supports with tools to form positive relationships, develop sexual advocacy and, ultimately, increase people’s ability to make informed decisions regarding their bodies.”  

“Sexuality, human connection, and intimacy are a core part of our lives, yet access to positive sexuality supports is severely lacking as a community-based service for people with intellectual and developmental disabilities,” says Natalie Chin, Associate Professor of Law at the Disability and Aging Justice Clinic at CUNY School of Law. “The goal of full community integration cannot be realized if sexuality supports are not treated equally with education, employment, mental health, and other community-based services. I am excited that PPGNY is taking the lead in creating a sex-positive curriculum for young people ages 16-24 to support their positive and healthy engagement with their bodies when navigating issues of sexuality, human connection, and intimacy.” 

"AHRC New York City is thrilled to be working with the Project SHINE Network in helping move forward our continued commitment to equitable access of sexuality education resources and supports for people with disabilities,” says Marco Damiani, CEO of AHRC NYC.  “The topic of sexuality is often seen as taboo and we know from advocates and families how important this work is and the powerful impact it can have on someone's quality of life."  

Youth and adults with intellectual and developmental disabilities experience sexual desires and behaviors as a part of growth and development that are as diverse as those among the broader population. Yet too often, people with intellectual and developmental disabilities are left out of a sex and body-positive approach to sexuality education. As a result of limited access to sexuality education, people with intellectual disabilities may lack vital sexual health information, as well as the skills needed for sexuality awareness, decision making, and navigating healthy relationships.  

People with intellectual and developmental disabilities who live at the intersection of multiple marginalized identities such as race, sexual orientation, and gender identity, are disproportionately impacted by these and other health disparities due to systemic racism, homophobia, and transphobia. These biases compound the inequities faced in accessing positive sexuality supports and services. Project SHINE aims to help close these long-standing gaps. Sexuality education can reinforce the rights of youth with intellectual and developmental disabilities to make informed choices and participate in their communities in the ways they want.  

Project SHINE is a 3-year program funded through a grant from Health and Human Services.  

Click Here to learn more about Project SHINE 

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About the Partner Organizations 

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 services across 65% of NYS - including gynecological care; birth control; cancer screenings; pregnancy testing; STI testing and treatment; HIV prevention, testing, and counseling; transgender/nonbinary hormone therapy; and vasectomy. PPGNY is also proud to provide abortion services to anyone who needs compassionate, non-judgmental care. 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.  

AHRC New York City is a family governed organization committed to finding ways for people with intellectual and other developmental disabilities (I/DD) to build full lives as defined by each person and supported by dedicated families, staff, and community partners. Established in 1948, AHRC NYC today supports 15,000 people with I/DD and their families.  

Sinergia, Spanish for synergy, provides multicultural, lifespan services for people with disabilities. Sinergia works with people with disabilities and their families with a longstanding reputation for working with unserved and underserved families, many with limited English proficiency, who may be homeless or impoverished, or who may be struggling with insecure housing and income, lack of services, and discrimination based on ethnicity, language status, immigration status, gender or poverty. Since it was founded in 1977, Sinergia has remained faithful to its twin goals: the first and most immediate is to provide service coordination, information, and support to families and individuals in need. The second, more long-term goal is to provide families and individuals the means of self-empowerment, ultimately enabling them to become advocates for themselves and their families. 

YAI, founded in 1957, remains at the forefront of an extraordinary movement aimed at empowering people with intellectual and developmental disabilities and their families. Committed to seeing beyond disability, YAI provides opportunities for people to live, love, work, and learn in their communities. With more than 4,000 employees throughout Downstate New York, Northern New Jersey, and California, YAI and its affiliates provide children and adults with a comprehensive range of supports and services including housing; medical, behavioral, and dental care; education; supported employment; networking and skills-building; family respite; and crisis intervention. 

New Alternatives for Children, Inc. (NAC) was founded in 1982 on the belief that all children have the right to be nurtured within a safe and permanent family, and that the right combination of comprehensive services and loving care will make this possible. NAC’s mission is to provide innovative, high-quality services in support of birth, foster, and adoptive families who care primarily for medically complex children, which includes children with severe physical disabilities, emotional and behavioral challenges, and intellectual and developmental disabilities. NAC’s services enable children to remain in or to be returned to their families whenever possible, or to be adopted by loving families. Working with families living in poverty, NAC’s continuum of services ensures that children’s physical, social, educational, recreational, medical, and mental healthcare needs are met. NAC builds on family strengths, provides opportunities, and assists all family members in reaching for and achieving their potential. 

Self-Advocacy Association of New York State, Inc. (SANYS) is an organization by and for people with Intellectual and Developmental Disabilities that helps people with IDD speak up for themselves and others. 

The Disability and Aging Justice Clinic at CUNY School of Law advocates to enhance and promote the civil rights, autonomy, and self-determination of low-income individuals with disabilities and aging adults, and their families and support networks.