연구 리포트

 

– 도시행정연구실 한연주 연구원 -

 

1. 연구의 배경 및 목적

 

 지적장애인과 관련된 사건들이 계속적으로 발생해 우리에게 충격을 주고 있다. 2016년 7월 충주시 오창읍 한 축사에서 지적장애인을 20년 동안 노예처럼 부린 일명‘만득이 사건’이 발생하였고, 2017년 3월에는 자신의 말을 듣지 않고 자꾸 운다는 이유로 계모가 9살 지적장애 의붓딸을 밀쳐 숨지게 한 사건이 발생하였다.

 우리나라에서 지적장애는 발달장애의 한 유형으로 「장애인복지법」과 「발달장애인 권리보장 및 지원에 관한 법률」에서 지적장애와 자폐성장애를 발달장애인이라 정의하고 있다. 구체적으로 지적장애는 정신 발육이 항구적으로 지체되어 지적 능력의 발달이 불충분하거나 불완전하여 자신의 일을 처리하는 것과 사회생활에 적응하는 것이 상당히 곤란한 사람, 자폐성장애는 소아기 자폐증, 비전형적 자폐증에 따른 언어·신체표현·자기조절·사회적응 기능 및 능력의 장애로 인하여 일상생활이나 사회생활에 상당한 제약을 받아 다른 사람의 도움이 필요한 사람으로 정의하고 있다.

 발달장애인은 매년 7,000명 씩 증가하고 있으며, 발달장애인의 사회참여를 촉진시키고 권리를 보호하며 인간다운 삶을 영위하고자 2015년 11월 21일 「발달장애인 권리보장 및 지원에 관한 법률」이 제정ㆍ시행되었다. 이로 인해 국가와 지방자치단체에서는 발달장애인 당사자와 가족의 생애단계별 생활실태와 현황, 욕구를 파악하고, 이를 토대로 종합적이고 체계적인 지원방안을 마련하는 것이 필요하게 되었다. 이에 따라 본 연구에서는 수원시 발달장애인의 연령대를 영·유아기(만 5세 이하), 학령기(만 6세~만 17세), 성인기(만 18세~만 49세), 노년기(만 50세 이후)로 구분하여 발달장애인 당사자 및 가족의 각 생애단계별 특성 및 욕구를 파악하고자 하였으며, 본 연구결과를 바탕으로 2017년도에 발달장애인 생애단계별 지원계획을 수립하고자 한다.

 

2. 수원시 발달장애인 현황

 

 수원시 거주 발달장애인은 2010년 2,594명에서 2016년 6월 3,371명으로 매년 지속적으로 증가하고 있으며, 경기도에서 두 번째로 많다. 발달장애인 중 지적장애 2,874명(85.3%), 자폐장애 497명(14.7%)으로 지적장애가 압도적으로 많다.

구분	2010년	2011년	2012년	2013년	2014년	2015년	2016년 6월
계	2,594(100.0)	2,710(100.0)	2,842(100.0)	3,013(100.0)	3,143(100.0)	3,310(100.0)	3,371(100.0)
지적	2,283(88.0)	2,376(87.7)	2,478(87.2)	2,606(86.5)	2,696(85.8)	2,829(85.5)	2,874(85.3)
자폐	311(12.0)	334 (12.3)	364(12.8)	407(13.5)	447(14.2)	481(14.5)	497(14.7)
주 : 2010~2015년 매년 연말 기준 자료 1 : 보건복지부(2010-2015). 장애인 등록 현황 2 : 2016년 6월 말 기준. 수원시청 장애인복지과 내부자료

 

 성별은 남성이 64.9%로 많으며, 생애단계별로는 성인기(1,976명, 58.6%), 학령기(938명, 27.8%), 노년기(380명, 11.3%), 영·유아기 77명(2.3%) 순으로 나타나, 만 18세~만49세의 성인기가 과반수 이상을 차지하고 있다. 

 

<표 2> 수원시 발달장애인 생애단계별 현황

(단위 : 명, %)

구분		계		영·유아기 (만0~5세)		학령기 (만6~17세 )		성인기 (만18~49세)		노년기 (만 50세 이후)
장애 유형	계	3,371	(100.0)	77	(2.3)	938	(27.8)	1,976	(58.6)	380	(11.3)
	지적	2,874	(100.0)	51	(1.8)	688	(23.9)	1,757	(61.1)	378	(13.2)
	자폐	497	(100.0)	26	(5.2)	250	(50.3)	219	(44.1)	2	(0.4)
성별	계	3,371	(100.0)	77	(2.3)	938	(27.8)	1,976	(58.6)	380	(11.3)
	남	2,189	(100.0)	54	(2.5)	647	(29.6)	1,285	(58.7)	203	(9.3)
	여	1,182	(100.0)	23	(1.9)	291	(24.6)	691	(58.5)	177	(15.0)
장애 등급	계	3,371	(100.0)	77	(2.3)	938	(27.8)	1,976	(58.6)	380	(11.3)
	1급	910	(100.0)	13	(1.4)	270	(29.7)	571	(62.7)	56	(6.2)
	2급	1,192	(100.0)	43	(3.6)	373	(31.3)	678	(56.9)	98	(8.2)
	3급	1,269	(100.0)	21	(1.7)	295	(23.2)	727	(57.3)	226	(17.8)

 

 

3. 수원시 발달장애인 양적조사 및 질적조사 결과

 

 수원시 발달장애인은 학령기에서 성인기로 넘어갈 때 서비스 단절현상을 경험하고 있다. 학령기 발달장애인은 80.1%의 서비스 이용률을 보이나, 성인기 26.0%, 노년기 4.2%로 성인기 이후 서비스 단절 현상이 나타나고 있다. 

 

[그림 1] 수원시 발달장애인 생애단계별 복지서비스 이용률

(단위 : %)

 

 

 

 양적조사와 질적조사 결과, 발달장애인의 생애단계와 장애정도에 따라 발달장애인 서비스에 대한 욕구가 차이가 있다. 영ㆍ유아기의 경우 장애 조기발견과 치료를 위해 상담하거나 자문을 구하고 정확한 진단을 받을 수 있는 기관에 대한 공적인 통로가 필요하였으며, 학령기의 경우 복지서비스나 교육서비스에 대한 정보를 제공해주고 체계적으로 관리해주는 시스템이 필요한 것으로 나타났다. 성인기 발달장애인의 경우 이용할 수 있는 프로그램이 부족하기 때문에 성인기 프로그램의 개발과 평생교육의 확대, 발달장애인의 특성에 맞는 일자리에 대한 욕구가 높았으며, 노년기의 경우 주 돌봄자의 부재로 인해 거주시설(생활)과 건강과 소득 지원 등의 욕구가 높게 나타났다. 

 생애단계별 공통점은 발달장애인은 연령이 많아질수록 거의 모든 일상에 타인이 도움이 필요한 경우가 50%가 넘었으며, 영ㆍ유아기(91.3%), 학령기(84.0%), 성인기(73.3%)의 주 돌봄자는 어머니(母)이며, 노년기부터는 비장애 형제ㆍ자매(48.8%)로 바뀌고 있으나 여전히 한 사람에게 발달장애인의 양육과 지원에 대한 부담이 집중되어 있다. 또한 모든 연령층에서 심리사회적 부담ㆍ신체적 부담ㆍ경제적 부담이 모두 높게 나타났다.

 생애단계별 인권차별 경험은 영ㆍ유아기 65.2%, 학령기 68.7%, 성인기 71.3%, 노년기 48.0%가 차별을 경험했다고 응답하였으며, 차별받은 부문으로는 영ㆍ유아기와 학령기는 교육기관, 성인기와 노년기는 여가 및 문화생활에서 가장 많이 경험한 것으로 나타났다.

 영ㆍ유아기의 17.4%, 학령기의 23.7%, 성인기의 29.3%, 노년기의 12%만이 발달장애인의 노후준비를 하고 있었다.

 

4. 수원시 발달장애인 생활실태 연구결과 요약 및 정책제언

 

 수원시 발달장애인의 생활실태를 통해 나타난 문제점은 첫째, 영ㆍ유아 시기에는 장애를 조기발견 할 수 있는 지원체계가 부족하며 재활(치료)서비스에 집중되어 자녀의 평생설계를 할 수 있는 준비가 부족하다. 둘째, 학령기는 학교와 친구들, 선생님의 인식부족과 편견, 수업내용의 이해 등의 어려움이 발생하고 있으며, 셋째, 성인기와 노년기는 서비스 중단현상이 발생하고 있으며 건강과 소득보장의 어려움이 심해지고 있다. 넷째, 모든 생애단계에서 공통점으로 나타난 문제는 복지서비스에 대한 정보의 접근성과 교육-의료-복지서비스의 분절된 체계이다.

 수원시 발달장애인 현황조사 및 양적조사, 질적조사 결과를 바탕으로 다음과 같이 정책제언을 하고자 한다. 첫째, 지역사회를 기반으로 한 조기발견 체계구축과 장애진단을 위한 재정적 지원, 둘째, 발달장애 관련 정보의 접근성 및 공식적인 통로의 구축, 셋째, 발달장애인의 주 돌봄자 및 가족의 지원체계의 확대와 주 돌봄자의 역량강화, 넷째, 생애단계별 복지시설 및 인프라, 인력의 확대, 다섯째, 생애단계별 지원서비스 및 통합관리체계(교육-고용-의료-복지)의 구축, 여섯째, 인권적 관점의 접근과 인식개선의 거점기관 지정이 필요함을 제언하고자 한다.

 

#발달장애, #발달장애인 권리보장 및 지원에 관한 법률, #생애단계, #지적장애, #자폐성장애, #Developmental disabilities, #Developmental disorders, #수원시정연구원, #수원시

 

 

 

∣차 례∣

제1장 서 론 ····································································1

제1절 연구의 배경 및 목적 ··························································1

1. 연구의 배경 및 목적 ····························································1

제2절 연구의 방법 ································································3

제3절 연구의 한계 ································································3

 

제2장 이론적 배경 ································································5

제1절 발달장애의 개념 및 특성 ·······················································5

1. 발달장애의 개념 ·······························································5

2. 발달장애의 특성 ·······························································8

제2절 발달장애와 생애단계 ··························································11

1. 장애와 생애단계 ······························································11

2. 발달장애인의 생애단계 ··························································12

3. 발달장애인의 생애단계별 특징 및 복지 욕구 ···········································16

 

제3장 수원시 발달장애인 현황 ························································23

제1절 수원시 등록장애인 현황 ························································23

1. 수원시 등록장애인 추이 ··························································23

2. 장애유형별 현황 ·······························································25

3. 행정구역별 현황 ·······························································26

4. 연령별 현황 ··································································29

제2절 발달장애인 현황 ·····························································30

1. 경기도 발달장애인 현황 ··························································30

2. 수원시 발달장애인 현황 ··························································32

제3절 발달장애인 생애단계별 시설 및 이용자 현황 ··········································40

1. 생애단계별 장애인 복지시설 구분 ····················································40

2. 영·유아(만0~5세 이하) ··························································43

3. 학령기(만6~17세) ······························································49

4. 성인기(만18~49세) ·····························································53

5. 생애단계 공통 시설 ······························································61

제4절 수원시 장애인복지정책 이용자 현황 ··················································75

제5절 소결 ·······································································77

 

제4장 생활실태 및 욕구조사 ····························································81

제1절 양적연구 개요 ·································································81

제2절 영ㆍ유아기 발달장애인의 생활실태 및 욕구조사 ···········································82

1. 조사 개요 ······································································82

2. 분석 결과 ······································································83

제3절 학령기 발달장애인의 생활실태 및 욕구조사 ··············································91

1. 조사 개요 ······································································91

2. 분석 결과 ······································································92

제4절 성인기 및 노년기 발달장애인의 생활실태 및 욕구조사 ······································100

1. 조사 개요 ······································································100

2. 분석 결과 ······································································101

제5절 공통 질문 ·····································································104

1. 돌봄 및 가족 부문 ································································104

2. 건강 부문 ······································································112

3. 문화 및 여가 부문 ································································113

4. 결혼 및 출산 부문 ································································119

5. 인권 부문 ······································································119

6. 장래계획 부문 ····································································121

제6절 생애단계별 욕구에 대한 질적조사 ·····················································123

1. 조사 목적과 내용 ··································································123

2. 조사 대상과 방법 ··································································123

3. 조사 결과 ·······································································124

       

4. 결론 ···········································································136

제5장 연구결과 요약 및 정책 제언 ·························································139

제1절 연구결과 요약 ···································································139

1. 생애단계별 요약 ····································································139

2. 부문별 요약 ······································································140

제2절 정책 제언 ······································································143

 

참고문헌 ············································································147