□ 2019 특수교육통계에 따르면(교육부, 2019), 장애 영아와 유치원 특수교육대상자는 6,521명이고, 보육통계에 따르면(보건복지부, 2018a), 어린이집에 다니는 장애 영유아는 11,773명임. 장애 영유아 정책은 유아교육 쪽에서는 유아특수교육으로, 보육 쪽에서는 취약보육 중 하나로 이원화되어 있음.
□ 현재 장애인을 위한 법률과 장애 영유아를 위한 다양한 정책들이 존재하며 장애 영유아를 위한 양육 지원 관련 제도와 정책들이 지속적으로 늘어나고 있음. 그러나 부모 및 가족의 어려움과 요구는 과거와 크게 다르지 않아, 그동안 제안되었던 정책 제언들이 실제에서는 충분히 반영되지 않고 있다고 볼 수 있음.
□ 선행연구를 살펴보면, 장애 영유아를 양육하는 당사자인 부모들은 실질적인 어려움에 직면하고 있음. 장애 진단의 지연, 장애 영유아 가족 대상 교육 및 상담 부족, 장애 유형이나 정도가 고려되지 않은 배치, 지원 인력 부족(이정림 김은영, 엄지원, 강경숙, 2012), 장애 영유아에 대한 비용 지원, 통학 차량 지원 부족, 적절한 시기에 재활치료나 조기교육 부재, 부모에 대한 심리지원 부재(권미경, 최효미, 최지은, 김건희, 2015) 등, 부모들은 어려운 점들이 많은 것으로 나타남. 또한 부모들은 장애 영유아 자녀가 통합교육·보육을 받으면서도 동시에 질높은 개별화 교육을 받기를 원하고 있었음(김은영, 이소현, 유은영, 송신영, 2007; 이정림 외, 2012).
□ 이런 맥락에서 장애 영유아에 관한 정확한 실태 조사와 부모들의 요구조사가 필수적임. 그동안의 교육부의 ‘특수교육실태조사’, 한국장애인개발원과 중앙장애 아동발달장애인 지원센터의 ‘장애 아동 및 가족 실태조사’, 육아정책연구소 ‘보육실태조사’ 등도 장애 영유아 부모의 어려움이나 그들의 지원 요구를 파악하는 데는 다소 한계점이 존재함.
□ 본 연구의 목적은 장애 영유아의 양육 실태와 지원 요구를 파악하여 장애 영유아와 가족을 위한 정책적 시사점을 제시하고, 정부 정책 수립을 위한 기초 자료를 수집하는 것임. The purpose of this study was to investigate the parenting status and needs of infants and young children with disability, and present policy implications for disabled children and their families. As a research method, 989 parents with disabled infants nationwide were surveyed from Aug. 12, 2019 to Oct. 4.
Main results of research were as follows. First, the respondents replied that an exchange between disabled parents was the main place where they received a lot of help after diagnosed with the disabled. Also, 90 percent of main caregivers were their mothers, and the weekday care hours of main caregivers were 8 hours and 14 hours on weekends. Seventy-seven percent of parents felt physical fatigue in their upbringing, and 90 percent worried about their children's future. Also, 50 percent of parents experienced depression, 73 percent of parents felt financial burden, and 79 percent worried about costs. Fifty percent of parents said they found the disorder when their children were 0-1 years old. It was difficult for parents to recognize the disability of the first child when diagnosing a disability.
Second, in the health and medical areas, respondents asked for quantitative expansion of daytime wards and public child rehabilitation hospitals. In addition, 60 percent of the respondents said local medical facilities were inconvenient, due to lack of understanding of disability among the medical staff. Also, the first policy priority was expansion of disabled children's hospitals, and more than 80 percent of parents said that improvement of the health screening system was necessary because the current screening system was difficult to identify with and does not accurately link development and treatment services in local medical facilities.
Third, the respondents(users) of kindergartens, childcare centers and special schools (classes) said that the agency's attendance was the most inconvenient, and the reason for the agency's choice was because they wanted integrated education. Also, the reason for using early classes at welfare centers was because various services were easy the use. Their difficulty is the lack of treatment or rehabilitation services, and those who do not use the institution are found to be child-rehabilitating hospitals and homes.
Fourth, 60% of the respondents said they were satisfied with the integrated disability education, and the reason for the dissatisfaction was the lack of the integrated disability education facilities. The policy priority was to expand the workforce of special education teachers to enhance the quality of the integrated disability education, and to link the base institutions that provide and support information for disabled young children in the transition process of elementary schools. The most necessary things for elementary school transition and school adaptation were understanding and consideration of the school teacher. Also, 5 percent of the respondents said they experienced child abuse, mainly neglect and emotional abuse. To solve with this, it is necessary to strengthen the public disclosure of CCTVs and expand the workforce of special education teachers.
Fifth, fifty percent of the respondents said they experienced social discrimination. The first priority of the discrimination was when the institution was admitted and when the second was insurance contract. Respondents also recognized that when experiencing discrimination, there were no agencies that asked for help, and that there was no significant social change in social discrimination.
The policy proposals were as follows. First, we need to find ways to narrow the discrimination and gap between disabled children and their families throughout the legal system, the entire organization/policy. Second, it was proposed to create an early service provision structure that was tailored to individual young children within practical community care. Third, it was proposed that the easy commuting to school for disabled children, supplementation of institutions and human resources, an inclusive integration orientation rather than simple physical integration, and a reform of the operation and evaluation of the Nuri curriculum that reflects the characteristics of the disabled. Finally, it was proposed that special education support be internalized and strengthened, administrative punishment be strengthened to prevent child abuse of disabled infants, and village community be strengthened.