关注残独与精准扶助:独生子女伤残家庭生活困境及政策促进研究
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摘要
健康中国2030"规划纲要明确提出促进健康老龄化和维护残疾人健康,而独生子女伤残家庭正是这两方面健康的弱势叠加。利用2017年陕西省西安市独生子女伤残家庭普查数据和入户访谈,分析了独生子女伤残家庭的生活困境,并提出改善其生活状况的政策建议。研究发现,独生子女先天致残比例占55. 6%,需长期照护和治疗的比例高达80%;伤残独生子女的病情现状比伤残等级与父亲特征变量更为显著相关,需要长期看护的残独父亲的健康状况更差、离婚率更高、帮扶需求更多;残独家庭面临着照护时期长、经济状况差、心理压力大和养老压力重等多重困境;建议应该提高残独家庭关注度、实施精准帮扶和提供喘息照护。
It is clearly stated in Outline of the Plan of Health China 2030 issued by the central government in 2016 that health services for key populations should be strengthened,including the promotion of the health of aging people and people with disabilities. The families with only one child who is disabled have both the two disadvantages above,which makes them more vulnerable. Using the data from the special survey"Current situation of one-disabled-child families"and in-depth interviewing conducted in Xi'an city Shaanxi province in 2017,the paper aims to analyze the one-disabled-child families living dilemma and puts forward policy countermeasures to promote the welfare of one-disabled-child families. The results show that the proportion of the only child's inherent disabilities accounted for 55. 6%,and the proportion of long-term care and treatment is as high as 80%; Compared to grade of disability,the status of the disabled only child is more significantly related to the father's characteristics,the father with the child who needs long-term care has poor health condition,high divorce rate and more support need; The family is faced with multiple difficulties such as long-term care,poor economic situation,psychological and aging pressure. It is suggested that the family should be paid more attention,carry out the targeted assistance and provide the respite care and so on.
It is clearly stated in Outline of the Plan of Health China 2030 issued by the central government in 2016 that health services for key populations should be strengthened,including the promotion of the health of aging people and people with disabilities. The families with only one child who is disabled have both the two disadvantages above,which makes them more vulnerable. Using the data from the special survey"Current situation of one-disabled-child families"and in-depth interviewing conducted in Xi'an city Shaanxi province in 2017,the paper aims to analyze the one-disabled-child families living dilemma and puts forward policy countermeasures to promote the welfare of one-disabled-child families. The results show that the proportion of the only child's inherent disabilities accounted for 55. 6%,and the proportion of long-term care and treatment is as high as 80%; Compared to grade of disability,the status of the disabled only child is more significantly related to the father's characteristics,the father with the child who needs long-term care has poor health condition,high divorce rate and more support need; The family is faced with multiple difficulties such as long-term care,poor economic situation,psychological and aging pressure. It is suggested that the family should be paid more attention,carry out the targeted assistance and provide the respite care and so on.
引文
陈响.我国老年残疾人的家庭长期照护体系研究——以北京市老年残疾人为例[J].理论月刊,2011,(9):100-102.
崔永铎.吉林省计划生育特殊家庭诉求及扶助对策研究[D].吉林大学,2015.
洪娜.独生子女伤残状况及对计生扶助政策的需求分析[J].南方人口,2010,25(3):51-56.
洪娜.独生子女伤残预防与扶助标准差别化探讨——基于苏州市吴中区193个样本的思考[J].人口与发展,2011,17(3):59-64.
李琳.318个伤残家庭父母可享一年免费家政服务[N].华商报,2015-05-19. http://ehsb.hsw.cn/shtml/hsb/20150519/502406.shtml
刘岚.独生子女伤残死亡家庭扶助与社会保障[J].人口与发展,2008,14(6):32-34.
李兰永,王秀银.重视独生子女意外死亡家庭的精神慰藉需求[J].人口与发展,2008,14(6):27-30.
马金凤.卫计委为独生子女及伤残家庭设帮扶人一户两人.新华网,2016-08-19. http://www.xinhuanet.com/politics/2016-08/19/c_129240973. htm
穆光宗.独生子女家庭本质上是风险家庭[J].人口研究,2004,28(1):33-37.
穆光宗.独生子女家庭非经济养老风险及其保障[J].浙江学刊,2007,(3):10-16.
邵宁.“残独家庭”父母:盼“无忧工程”监护残疾子女[N].新民晚报,2015-11-17.http://xmwb.xinmin.cn/html/2015-11/17/content_4_2.htm
沈亚芳.独生子女意外伤亡家庭救助金运行机制研究——以常熟市为例[D].上海交通大学,2008.
佟新.给残疾人家庭更多的社会支持[J].北京观察,2008,(10):47-48.
王广州,郭志刚,郭震威.对伤残死亡独生子女母亲人数的初步测算[J].中国人口科学,2008,(1):37-43.
魏红曼.残疾人日常生活照料及其小组工作的介入研究——以河北省W小区为例[D].山东大学,2016.
吴士勇.建立扶助制度,同享发展阳光[J].人口与发展,2008,14(6):34-38.
韦艳,姜全保.空巢余悲与生活困境:失独家庭生活福利弱势性研究[J].人口与发展,2014,20(5):93-101.
杨海娟.深圳市独生子女伤残死亡家庭帮扶模式研究[D].华中师范大学,2016.
尹志刚,张子谏,李振锋.北京城市独生子女空巢失能父母家庭生活状况调查报告[A].北京人口发展中心(编著).北京人口
发展研究报告(2013)[R].北京:社会科学文献出版社,2013. 127-149.
周沛,周进萍.独生子女风险及其保障研究[J].社会科学研究,2009,(1):90-95.
周倩.福利!深圳将为独生子女家庭购买“意外险”.深圳新闻网,2017-10-25http://www.sznews.com/news/content/2017-10/25/content_17582758.htm
周林刚.残疾人社会保障体系与公共服务体系建设研究[J].中国人口科学,2011(2):93-101.
赵艳霞.城市独生子女家庭面临的风险及规避研究[D].济南大学,2010.
赵仲杰.城市独生子女伤残、死亡给其父母带来的困境及对策——以北京市宣武区调查数据为依据[J].人口与社会,2009,25(2):55-59.
Blitz Wetterland, Robin. Married with Special Needs Children:A Couple's Guide to Keeping Connected[J].Journal of Developmental&
Behavioral Pediatrics, 2008,29(3):230.
Darling, R. B.,Baxter,C. Focus on families:Sociological methods in early intervention[M]. Austin, Texas:Pro Ed, 1996.
Larson,S. A.,Lakin K. C., Anderson L.. Prevalence of mental retardation and developmental disabilities:estimates from the 1994/1995National Health Interview Survey Disability Supplements.[J]. Am J Ment Retard,2001,106(3):231-252.
Meyer,D. J. Uncommon fathers:Reflections on raising a child with a disability[M]. Woodbine house, 1995.
Murphy M A. The family with a handicapped child:a review of the literature.[J]. Journal of Developmental&Behavioral Pediatrics,1982,3(2):73-82.
Park J Y,Turnbull A P,Turnbull H R I. Impacts of Poverty on Quality of Life in Families of Children with Disabilities.[J]. Exceptional Children,2002,68(2):151-170.
Patterson J M. A family systems perspective for working with youth with disability[D]. Pediatrician, 1991, 18(2):129.
Simmerman S, Blacher J, Baker B L. Fathers'and mothers'perceptions of father involvement in families with young children with a disability[J].Australian Journal of Mental Retardation,2001,26(4):325-338.
Upshur,C. C. Families and the community service maze. In M. Seligman(Ed.), The family with a handicapped child[M]. pp91-118. Boston:Allyn&Bacon, 1991.
Van E J, Moree M, Koopmanschap M,et al. Respite care--an explorative study of demand and use in Dutch informal caregivers[J].Health Policy,2006,78(2-3):194-208.
(1)本文曾尝试进行大规模抽样入户补充调查,以期对残独家庭的生活状况和需求进行更为细致的补充,但是实际执行困难非常大,仅仅对此类家庭访谈也是面临很多困难,需要当地基层社区干部全程陪同,害怕有的残疾受访人时而发病,且残独家庭父母都要长期不间断地照顾子女,能够完整回答的时间也非常有限,最终我们和卫计部门沟通后,进行入户访谈。
(2)由于问卷调查数据中母亲的一些特征变量存在大量的缺失,加之已有研究对残疾子女的父亲研究的比较少见,因此本文主要利用伤残独生子女的父亲数据进行分析。
(1)由于问卷调查数据中母亲的一些特征变量存在大量的缺失,加之已有研究对残疾子女的父亲研究的比较少见,因此本文主要利用伤残独生子女的父亲数据进行分析。
崔永铎.吉林省计划生育特殊家庭诉求及扶助对策研究[D].吉林大学,2015.
洪娜.独生子女伤残状况及对计生扶助政策的需求分析[J].南方人口,2010,25(3):51-56.
洪娜.独生子女伤残预防与扶助标准差别化探讨——基于苏州市吴中区193个样本的思考[J].人口与发展,2011,17(3):59-64.
李琳.318个伤残家庭父母可享一年免费家政服务[N].华商报,2015-05-19. http://ehsb.hsw.cn/shtml/hsb/20150519/502406.shtml
刘岚.独生子女伤残死亡家庭扶助与社会保障[J].人口与发展,2008,14(6):32-34.
李兰永,王秀银.重视独生子女意外死亡家庭的精神慰藉需求[J].人口与发展,2008,14(6):27-30.
马金凤.卫计委为独生子女及伤残家庭设帮扶人一户两人.新华网,2016-08-19. http://www.xinhuanet.com/politics/2016-08/19/c_129240973. htm
穆光宗.独生子女家庭本质上是风险家庭[J].人口研究,2004,28(1):33-37.
穆光宗.独生子女家庭非经济养老风险及其保障[J].浙江学刊,2007,(3):10-16.
邵宁.“残独家庭”父母:盼“无忧工程”监护残疾子女[N].新民晚报,2015-11-17.http://xmwb.xinmin.cn/html/2015-11/17/content_4_2.htm
沈亚芳.独生子女意外伤亡家庭救助金运行机制研究——以常熟市为例[D].上海交通大学,2008.
佟新.给残疾人家庭更多的社会支持[J].北京观察,2008,(10):47-48.
王广州,郭志刚,郭震威.对伤残死亡独生子女母亲人数的初步测算[J].中国人口科学,2008,(1):37-43.
魏红曼.残疾人日常生活照料及其小组工作的介入研究——以河北省W小区为例[D].山东大学,2016.
吴士勇.建立扶助制度,同享发展阳光[J].人口与发展,2008,14(6):34-38.
韦艳,姜全保.空巢余悲与生活困境:失独家庭生活福利弱势性研究[J].人口与发展,2014,20(5):93-101.
杨海娟.深圳市独生子女伤残死亡家庭帮扶模式研究[D].华中师范大学,2016.
尹志刚,张子谏,李振锋.北京城市独生子女空巢失能父母家庭生活状况调查报告[A].北京人口发展中心(编著).北京人口
发展研究报告(2013)[R].北京:社会科学文献出版社,2013. 127-149.
周沛,周进萍.独生子女风险及其保障研究[J].社会科学研究,2009,(1):90-95.
周倩.福利!深圳将为独生子女家庭购买“意外险”.深圳新闻网,2017-10-25http://www.sznews.com/news/content/2017-10/25/content_17582758.htm
周林刚.残疾人社会保障体系与公共服务体系建设研究[J].中国人口科学,2011(2):93-101.
赵艳霞.城市独生子女家庭面临的风险及规避研究[D].济南大学,2010.
赵仲杰.城市独生子女伤残、死亡给其父母带来的困境及对策——以北京市宣武区调查数据为依据[J].人口与社会,2009,25(2):55-59.
Blitz Wetterland, Robin. Married with Special Needs Children:A Couple's Guide to Keeping Connected[J].Journal of Developmental&
Behavioral Pediatrics, 2008,29(3):230.
Darling, R. B.,Baxter,C. Focus on families:Sociological methods in early intervention[M]. Austin, Texas:Pro Ed, 1996.
Larson,S. A.,Lakin K. C., Anderson L.. Prevalence of mental retardation and developmental disabilities:estimates from the 1994/1995National Health Interview Survey Disability Supplements.[J]. Am J Ment Retard,2001,106(3):231-252.
Meyer,D. J. Uncommon fathers:Reflections on raising a child with a disability[M]. Woodbine house, 1995.
Murphy M A. The family with a handicapped child:a review of the literature.[J]. Journal of Developmental&Behavioral Pediatrics,1982,3(2):73-82.
Park J Y,Turnbull A P,Turnbull H R I. Impacts of Poverty on Quality of Life in Families of Children with Disabilities.[J]. Exceptional Children,2002,68(2):151-170.
Patterson J M. A family systems perspective for working with youth with disability[D]. Pediatrician, 1991, 18(2):129.
Simmerman S, Blacher J, Baker B L. Fathers'and mothers'perceptions of father involvement in families with young children with a disability[J].Australian Journal of Mental Retardation,2001,26(4):325-338.
Upshur,C. C. Families and the community service maze. In M. Seligman(Ed.), The family with a handicapped child[M]. pp91-118. Boston:Allyn&Bacon, 1991.
Van E J, Moree M, Koopmanschap M,et al. Respite care--an explorative study of demand and use in Dutch informal caregivers[J].Health Policy,2006,78(2-3):194-208.
(1)本文曾尝试进行大规模抽样入户补充调查,以期对残独家庭的生活状况和需求进行更为细致的补充,但是实际执行困难非常大,仅仅对此类家庭访谈也是面临很多困难,需要当地基层社区干部全程陪同,害怕有的残疾受访人时而发病,且残独家庭父母都要长期不间断地照顾子女,能够完整回答的时间也非常有限,最终我们和卫计部门沟通后,进行入户访谈。
(2)由于问卷调查数据中母亲的一些特征变量存在大量的缺失,加之已有研究对残疾子女的父亲研究的比较少见,因此本文主要利用伤残独生子女的父亲数据进行分析。
(1)由于问卷调查数据中母亲的一些特征变量存在大量的缺失,加之已有研究对残疾子女的父亲研究的比较少见,因此本文主要利用伤残独生子女的父亲数据进行分析。
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