September 2023 Special Needs Living Akron/Canton

SUPPORT, EDUCATION, & ADVOCACY! Welcome to the Down Syndrome Association of Northeast Ohio

WRITTEN BY SARAH SMITH

In 1982, a handful of parents whose children had Down syndrome began to meet informally over coffee for socialization and support. The organization, first called Mothers Who Care and then Parents Who Care, became the Up Side of Downs in the late 1980s. On September 18, 2021, the Up Side of Downs announced a name change and became the Down Syndrome Association of Northeast Ohio. The change was made to provide the organization with a more current and descriptive name for its purpose and mission. Now, more than 40 years after the organization began, the Down Syndrome Association of Northeast Ohio has grown from a grassroots parent movement to a staffed non-profit organization providing service to more than 1,000 families throughout Northeast Ohio. DSANEO programs focus on the three components of its missionsupport, education, and advocacy. Programs are designed to meet the needs of families, beginning with diagnosis through supporting individuals with Ds and their families during their lifetime. Through a variety of programs, the organization helps families navigate through ages and stages and engages parents, grandparents, siblings, and those with Down syndrome. DSANEO supports families with in-person and virtual hospital and home visits. DSANEO conducts support groups as well as private Facebook groups, moderated by DSANEO staff, that allow for opportunities for open discourse and idea sharing. Support groups include Moms, Dads, Baby and Toddler Play Groups, Grandparents Group, Circle of Support (for families dealing with a dual diagnosis of Ds and Alzheimer’s) DS+ (for families dealing with a dual diagnosis of Ds and autism), and De Familia a Familia, a support group for Spanish-speaking members. For young siblings, DSANEO partners with University Hospitals to offer SibShops, a program for siblings ages 7-12. DSANEO is an active member of Transition Boosters, a consortium of organizations providing programming for families of transition-age youth, the Employment Collaborative of Cuyahoga County, which helps individuals with disabilities secure employment, and the Northeast Ohio Coalition of Disability Organizations (formerly ADA Cleveland). DSANEO is also active with the Developmental Disabilities Practice-Based Research Network (DD-PBRN), led by Dr. Carl Tyler of the Cleveland Clinic. The mission of the DD-PBRN is to improve the health and healthcare of people with intellectual and developmental disabilities (IDD) throughout their lifespan through research, education, and advocacy.

DSANEO offers educational programming for children with Ds from 18 months of age through adulthood, recognizing the critical need for enrichment for young learners as well as ongoing learning opportunities for adults. The organization offers a blend of virtual and in-person programs to meet the needs of students with Down syndrome in Northeast Ohio. ACES (Able, Capable, Empowered, Strong) is comprehensive programming for adults designed to engage people with Down syndrome in a variety of ways, through education, support, and social activities. ACES includes Living and Learning life skills classes, Cooking with Confidence, and Sunburst Social Squad social outings. Social programs provide additional support and an opportunity for advocacy in the community. DSANEO hosts a blend of in-person and virtual events, understanding that more families can be reached by offering both options. Advocacy is an important aspect of the organization’s work. The largest event is the annual Northeast Ohio Buddy Walk, which brings several thousand people together for a day of celebrating people with Down syndrome in the community. The 2023 Buddy Walk was held at the Tri-C Western Campus on August 5th. October 12th is Cleveland Down Syndrome Day, which came about as a collaboration with Cleveland City Council to recognize people in the community who advocate and support people with Down syndrome. Since 2016, DSANEO has operated Artful 21, a bricks and mortar and online store featuring the work of over 20 artisans with Down syndrome. 90% of the proceeds go back to the artisans and individuals with Down syndrome who work in the store. In March of 2022, DSANEO launched Sunburst Snacks, designed to prepare, connect, and employ adults with Down syndrome. Sunburst Snacks currently employs four individuals with Down syndrome and sold over 3,500 snack boxes in 2022.

Medical Outreach provides support for families and medical professionals, striving to support the best outcomes for people of all ages with Down syndrome. In 2022, DSANEO hired Dr. Laura Cifra-Bean as Medical Outreach Director. Laura provides education and resources for healthcare professionals and students and conducts presentations to groups such as Case Western University genetic counseling students, Baldwin Wallace physician assistant students, University Hospitals grand rounds, and medical/pediatric residents.

Laura has created an email newsletter that is sent to over 150 local medical professionals quarterly with the latest updates on Down syndrome. The DSANEO website is updated with healthcare guidelines, medical resources, research, and information on healthy aging. Medical Advisory Board meetings are conducted twice annually, bringing together local health and research experts serving the needs of individuals with Down syndrome. These meetings, and ongoing communication with this board, provide the latest research and information on complex medical issues, preventative health strategies, and relevant resources. DSANEO hosts parent webinars about updated healthcare guidelines for children and adults with Down syndrome. In October 2022 the organization mailed Family-Friendly Global Medical Care Guidelines for Adults to every family in NEO with a loved one with Down syndrome age 18 and up.

More information about DSANEO can be found at www.dsaneo.org or by calling 216-447-8763.