The Virtual Shift: Early Childhood Intervention Therapies for Pakistani Children with Down Syndrome During COVID-19 (On Demand: Recorded)
Main Topic: Online Learning and Technology
Session Type: Paper
The paper will aim to discuss the impact of Karachi Down Syndrome Program (KDSP)’s virtual Early Childhood Intervention (ECI) service, comprising of speech and language therapy, occupational therapy and physical therapy clinics, for children with Down syndrome and their caregivers in Pakistan during the culmination of the COVID-19 pandemic from March 2020 to August 2020. Government sanctioned support services at regional and national levels are nearly absent for an approximate populace of 300,000 individuals with Down syndrome residing in Pakistan. Due to the lack of specialized services within the country, in 2014 KDSP was formed by a group of concerned parents who recognized the need of a platform which would not only advocate the value, acceptance and inclusion of individuals with Down syndrome, but provide them an opportunity to enhance their quality of life and realize their life aspirations. KDSP achieves this through six key areas of service; Early Childhood Intervention (ECI), Family Support, Healthcare, Education, Enrichment and Skills Development and Awareness. ECI was one of the first services initiated by KDSP, guaranteeing children with Down syndrome aged 0 – 7 years would have access to high quality and subsidized therapies. An outbreak of the COVID-19 pandemic led to a significant impact on the marginalized communities of the Global South, which exacerbated matters when major cities within Pakistan were put under strict lockdown and individuals with Down syndrome were confined to their houses with limited to no access to crucial services. Given this, KDSP decided to halt its on-ground services and make a 100% shift to offering virtual services in the best interest of individuals with Down syndrome and their caregivers. The ECI services incorporated a tele-therapy practice, conducting one-on-one sessions customized to the needs of each child. By August, 55 % sessions were conducted via video calls, 41 % via audio calls and 4% via both. Since the shift to the virtual space, 4800+ tele-therapy sessions have been offered to children till August, along with fee waivers to alleviate the financial burden for parents during the pandemic. The impact of virtual therapy services was measured through a telephonic survey with 100 parents and through service monitoring records. The results yielded; 42% parents reported virtual therapy sessions contributed toward their child’s developmental progress, whereas only 8% felt it was delayed, while 55% parents reported feeling more empowered and trained to practice therapy with their child independently. A 26 % increase was recorded in out of city therapies scheduled due to ease of access and a language of love, ‘physical touch’ was expressed and received by the child, through the parent, as parents practiced and followed therapists’ carefully guided instructions. The virtual shift has not been without its challenges, as 15% parents found it difficult to practice therapy with their child, due to connectivity issues and / or a lack of resources at home. Throughout the COVID-19 pandemic, KDSP aims to continue innovating its virtual methodologies to empower caregivers and to transform the developmental outcomes of children with Down syndrome.
- Understand the larger framework of disability access and inclusion in the Global South from a country such as Pakistan.
- Understand the barriers and challenges which exist within Pakistani society for individuals with Down syndrome and how KDSP mitigates these challenges by contributing toward the enrichment and evolution of the Down syndrome community within Pakistan, adding to the Sustainable Development Goals.
- Recognize the importance of early intervention and how it lays a foundation for the future of individuals with Down syndrome.
- Be inspired by speech and language therapy, physical Therapy and occupational Therapy innovations borne out of need and a lack of resources during a global pandemic and how it empowered parents to independently practice therapy with their child at home, in a developing economy such as Pakistan.
- Gain inspiration through the perseverance and determination of children to remain digitally connected to their therapists, in an unfortunate era of being physically distanced.
Keywords: Down syndrome, Digital Therapy, Early Childhood Intervention, Speech and Language therapy, Physical therapy, Occupational therapy, COVID – 19, Inclusion
View the Session: https://community.pacrim.coe.hawaii.edu/groups/4189398/feed
Ms. Samar NaqviKarachi Down Syndrome Program - Chief Operating Officer
Karachi Down Syndrome Program
Samar Naqvi is a mental health counselor and the Chief Operating Officer at the Karachi Down Syndrome Program (KDSP). She has been a disability inclusion advocate, trainer and consultant since 8 years. She is a Fulbright Scholar and a graduate of New York University (NYU), with an MA in Applied Psychology. Professionally, she has previously worked for United Nations, St. Luke’s and Roosevelt Hospital’s Family and Child Care Division, the Cooke Center for Learning and Development in New York and the Aman Foundation in Karachi. She has also contributed a chapter in American Psychological Association’s Handbook of Multicultural Psychology, 2013.