Increasing Support Systems for Families and their children with Down syndrome

On Thursday, March 20, 2025 at 11:30am—12:45pm

Recording

Thursday, March 20, 2025
11:30am—12:45pm
UN Headquarters
General Assembly Building, Conference Room 12

Member State Sponsor
Permanent Mission of Djibouti to the United Nations

Organizer and Co-Sponsor
Center for Family and Human Rights (C-Fam)

Additional Co-Sponsor
Global Down Syndrome Foundation

Event Background

This year’s theme for International Down Syndrome Awareness Day is “Improve Our Support Systems.” This event will bring together persons with Down Syndrome and their families, experts, and advocates to discuss the kinds of support systems needed to ensure that persons with Down Syndrome and their families are welcomed and supported in society.

Persons with Down Syndrome and their families need support systems. Depending on available resources, government can facilitate and provide a comprehensive range of support systems. These may include resource intensive support systems for the specific medical and educational needs of persons with Down Syndrome, but they also include support systems that can become readily accessible regardless of resources availability. Less resource-intensive support systems include parent support groups, policies to put in place early intervention systems, helplines, opportunities for recreation, cooperative educational options, as well as public awareness campaigns. In all of these, the family of persons with Down Syndrome is essential. 

The Human Rights Council recognized that families are a key element of support systems to empower persons with disabilities in resolution A/HRC/RES/32/23 on protection of the family: role of the family in supporting the protection and promotion of human rights of persons with disabilities. Support systems for persons with Down Syndrome should be designed with the central role of the family in mind in order to effectively provide support and social protection for children with Down Syndrome. Indeed, the state should ensure appropriate assistance to the family. 

Lack of support systems for families of persons with Down Syndrome, lack of accurate information, misconceptions and discriminatory about the contributions of persons with disabilities to social and family life, inadequate social assistance for families and mothers in particular, insufficient sensitivity training for medical and health personnel, and other factors contribute to discriminatory attitudes and negative social norms that target persons with disabilities. This in turn results in an ever-increasing number of children with disabilities being aborted before birth. Indeed, according to some estimates, over 90% of children diagnosed with Down syndrome in the womb are aborted worldwide. In more developed countries, where prenatal screening is enshrined in public policy, the number increases to even higher rates. 

Government should ensure that families with members with disabilities have access to a comprehensive range of support services that are responsive to the choices, wishes and needs of its members with disabilities (Based on A/HRC/32/23, OP12). They should take all necessary steps to help the family with support systems, which remains the first and most immediate environment where children with disabilities can develop their potential and enjoy a fulfilling life. As the fundamental group unit of society and the  natural environment  for  the  growth  and  wellbeing  of  all  its  members, and  particularly  children, the family should  be  afforded  the  necessary  protection  and  assistance  so  that  it  can  fully  assume  its responsibilities within the community (HRC/RES/32/23 PP5).

 

Speakers

Deborah Fidler, Ph.D., Professor of Human Development and Family Studies at Colorado State University. Dr. Fidler focuses her work on describing the effects of specific neurogenetic conditions on development and translating this knowledge into new interventions and educational opportunities that support learning, independence and wellbeing. 

Tonye Faloughi-Ekezie, Simone’s Oasis Foundation, Founder and CEO. Tonye is an advocate for all children with special needs. Through her “Special Mums Africa” podcast Tonye raises awareness about special needs children refuting superstition and stigma around these special children. Tonye is the author of the Ugo and Sim Sim book series that helps educate children on Down syndrome. 

Gigi Gianni (Self-Advocate) and Nancy Gianni, Founder and Chief Belief Officer of GiGi’s Playhouse. Author of #GenerationG, GiGi’s Playhouse Mission and Purpose, to change the way the world views Down syndrome and to send a global message of acceptance for all. 

Misty Coy Snyder, Founder, Happiness is Down Syndrome and Creative Director for Global Outreach & Advancement for Down syndrome at RODS Heroes

Moderator: Stefano Gennarini, J.D., VP for Legal Studies, C-Fam

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