Israeli Households Caring for Children and Adults with Intellectual and Developmental Disabilities: An Explorative Study

Authors: Ayelet Gur

Abstract:

Background: In recent years we are witnessing a welcome trend in which more children/persons with disabilities are living at home with their families and within their communities. This trend is related to various policy innovations as the UN Convention on the Rights of People with Disabilities that reflect a shift from the medical-institutional model to a human rights approach. We also witness the emergence of family centered approaches that perceive the family and not just the individual with the disability as a worthy target of policy planning, implementation and evaluation efforts. The current investigation aims to explore economic, psychological and social factors among households of families of children or adults with intellectual disabilities in Israel and to present policy recommendation. Methods: A national sample of 301 households was recruited through the education and employment settings of persons with intellectual disability. The main caregiver of the person with the disability (a parent) was interviewed. Measurements included the income and expense surveys; assets and debts questionnaire; the questionnaire on resources and stress; the social involvement questionnaire and Personal Wellbeing Index. Results: Findings indicate significant gaps in financial circumstances between households of families of children with intellectual disabilities and households of the general Israeli society. Households of families of children with intellectual disabilities report lower income and higher expenditures and loans than the general society. They experience difficulties in saving and coping with unexpected expenses. Caregivers (the parents) experience high stress, low social participation, low financial support from family, friend and non-governmental organizations and decreased well-being. They are highly dependent on social security allowances which constituted 40% of the household's income. Conclusions: Households' dependency on social security allowances may seem contradictory to the encouragement of persons with intellectual disabilities to favor independent living in light of the human rights approach to disability. New policy should aim at reducing caregivers' stress and enhance their social participation and support, with special emphasis on families of lower socio-economic status. Finally, there is a need to continue monitoring the economic and psycho-social needs of households of families of children with intellectual disabilities and other developmental disabilities.

Keywords: Disability policy, family policy, intellectual and developmental disabilities, Israel, households study, parents of children with disabilities.

Digital Object Identifier (DOI): doi.org/10.5281/zenodo.3455551

References:

[1] The United Nations. Convention on the Rights of Persons with Disabilities. (Internet). 2006. Available from: https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities/convention-on-the-rights-of-persons-with-disabilities-2.html.
[2] Reichman NE, Corman H, Noonan K. Impact of Child Disability on the Family. Matern Child Health J. 2008;12:679–683.
[3] Mailick Seltzer M, Greenberg JS, Floyd FJ, et al. Life Course Impacts of Parenting a Child With a Disability. American Journal on Mental Retardation. 2001;106:265–286.
[4] Cummins RA. The subjective well-being of people caring for a family member with a severe disability at home: a review. Journal of Intellectual & Developmental Disability. 2001;26:83–100.
[5] Powers ET. New Estimates of the Impact of Child Disability on Maternal Employment. American Economic Review. 2001;91:135–139.
[6] Shearn J, Todd S. Maternal Employment and Family Responsibilities: the Perspectives of Mothers of Children with Intellectual Disabilities. Journal of Applied Research in Intellectual Disabilities. 2000;13:109–131.
[7] Dobson B, Middleton S, Beardsworth AD. The impact of childhood disability on family life (Internet). York: Joseph Rowntree Foundation; 2001 (cited 2018 Oct 11). Available from: https://dspace.lboro.ac.uk/dspace-jspui/handle/2134/2473.
[8] Park J, Turnbull AP, Turnbull HR. Impacts of Poverty on Quality of Life in Families of Children with Disabilities. Exceptional Children. 2002;68:151–170.
[9] Wang M, Turnbull AP, Summers JA, et al. Severity of Disability and Income as Predictors of Parents’ Satisfaction with Their Family Quality of Life during Early Childhood Years. Research and Practice for Persons with Severe Disabilities. 2004;29:82–94.
[10] Fidler DJ, Hodapp RM, Dykens EM. Stress in Families of Young Children with Down Syndrome, Williams Syndrome, and Smith-Magenis Syndrome. Early Education and Development. 2000;11:395–406.
[11] Hassall R, Rose J, McDonald J. Parenting stress in mothers of children with an intellectual disability: the effects of parental cognitions in relation to child characteristics and family support. Journal of Intellectual Disability Research. 2005;49:405–418.
[12] Smith TB, Oliver MNI, Innocenti MS. Parenting Stress in Families of Children with Disabilities. American Journal of Orthopsychiatry. 2001;71:257–261.
[13] Ministry of Social Welfare and Social Affairs. 2016 Israel social services review. Jerusalem: Ministry of Social Welfare and Social Affairs; 2016.
[14] Pinto O. 2014 Recipients of general disability allowance. Jerusalem: National Insurance Institute; 2016.
[15] Giulio PD, Philipov D, Jaschinski I. Families with disabled children in different European countries. Families and societies. 2014;14:47.
[16] Bogenschneider K. Family Policy Matters: How Policymaking Affects Families and What Professionals Can Do. Routledge; 2014.
[17] Rimmerman A. Family Policy and Disability. Cambridge University Press; 2015.
[18] Dempsey I, Keen D. A Review of Processes and Outcomes in Family-Centered Services for Children with a Disability. Topics in Early Childhood Special Education. 2008;28:42–52.
[19] Goudie A, Carle AC. Ohio Study Shows That Insurance Coverage Is Critical For Children With Special Health Care Needs As They Transition To Adulthood. Health Affairs. 2011;30:2382–2390.
[20] Segone M. Bridging the gap. The role of monitoring and evaluation in evidence-based policy making (Internet). Geneva: UNICEF; 2008 (cited 2018 Oct 12). Available from: https://www.popline.org/node/210066.
[21] Anderson L, Hewitt A, Pettingell S, et al. Family and Individual Needs for Disability Support (FINDS) Community Report 2017. Minnesota: Research and Training Center on Community Living Institute on Community Integration, University of Minnesota; 2018.
[22] Rimmerman A, Gur A, Grinstein-Weiss M. Households of families of children with Intellectual Disabilities: Research report. Jerusalem: Intellectual Disability Division, Ministry of Labor, Social Affairs and Social Services; 2017.
[23] Central Bureau of Statistics. 2015 Household Income Survey. Jerusalem: Central Bureau of Statistics; 2015.
[24] Central Bureau of Statistics. 2015 Household Expenditure Survey. Jerusalem: Central Bureau of Statistics; 2015.
[25] European Central Bank. The Eurosystem Household Finance and Consumption Survey Results from the first wave. 2012;2. Available from: Retrieved from: https://www.econstor.eu/bitstream/10419/154637/1/ecbsp02.pdf.
[26] Family Resources Survey. Family Resources Survey, 2009-2010. London: Department for Work and Pensions,; 2009.
[27] Friedrich WN, Greenberg MT, Crnic K. A short-form of the Questionnaire on Resources and Stress. American Journal of Mental Deficiency. 1983;88:41–48.
[28] National Organization on Disability. Survey of Americans with disabilities. Study no. 20835. Final report. New York: Harris Interactive.; 2004.
[29] Cummins RA, Lau ALD. Personal wellbeing index- intellectual disability. 3rd ed. Melbourne, Australia: Deakin University; 2005.
[30] Central Bureau of Statistics. Households’ economic characteristics and housing density based on labor force surveys. Jerusalem: Central Bureau of Statistics; 2014.
[31] Central Bureau of Statistics. 2013 Israel households survey - long-term survey. Jerusalem: Central Bureau of Statistics; 2013.
[32] Rimmerman A, Eidelman S, Araten-Bergman T, et al. Participation gaps between people with/without disability in Israel. Jerusalem: National Insurance Institute; 2012.
[33] Braddock DL. Public Financial Support for Disability at the Dawn of the 21st Century. American Journal on Mental Retardation. 2002;107:478–489.
[34] Parish SL, Pomeranz-Essley A, Braddock D. Family Support in the United States: Financing Trends and Emerging Initiatives. Mental Retardation. 2003;41:174–187.
[35] Repetti RL, Taylor SE, Seeman TE. Risky families: Family social environments and the mental and physical health of offspring. Psychological Bulletin. 2002;128:330–366.
[36] Hauser‐Cram P, Warfield ME, Shonkoff JP, et al. Family Influences on Adaptive Development in Young Children with Down Syndrome. Child Development. 1999;70:979–989.
[37] Emerson E. Mothers of children and adolescents with intellectual disability: social and economic situation, mental health status, and the self-assessed social and psychological impact of the child’s difficulties. Journal of Intellectual Disability Research. 2003;47:385–399.
[38] Brown RI, MacAdam–Crisp J, Wang M, et al. Family Quality of Life When There Is a Child With a Developmental Disability. Journal of Policy and Practice in Intellectual Disabilities. 2006;3:238–245.