Article

Prevalence and economic well-being of families raising multiple children with disabilities

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Abstract

This study estimates the prevalence of households raising more than one child with disabilities, and examines these families' economic well-being. Using pooled data from the 2004 and 2008 Survey of Income and Program Participation we compare households with multiple children with disabilities (n = 932) to households with one disable child (n = 3457) and to households with at least one child but none with disabilities (n = 21,378) on measures of material hardship. Three percent of U.S. households with children had more than one disabled child. Compared to other households with children, those with multiple children with disabilities were significantly more likely to have income below the federal poverty level and to report material hardships. The number of children with disabilities is an important contextual variable for studying the economic circumstances under which, care is provided to children with disabilities. Its implications for practice and policy are discussed.

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... Over 20% of children live in households with incomes below the poverty line, exposing these families to material hardships such as an inability to pay household bills, food insecurity, and utility and phone disconnection (United States Census Bureau, 2013). Children with limiting health conditions are even more likely to live in poverty (28%) compared to children without limiting health conditions (Fujiura & Yamaki, 2000;Porterfield, 2002), and poverty status alone underestimates material deprivation experienced by families who have a child with a disabling health condition (Ghosh & Parish, 2013). ...
... A bidirectional relationship exists between children with limiting health conditions and family hardship (Elwan, 1999;Emerson, 2007;Fujiura & Yamaki, 2000), in which poverty, through exposure to hazards (physical, psychosocial, nutritional), leads to disability, which in turn leads to financial hardship (Alexander & Korenrot, 1995;Ghosh & Parish, 2013;Pagnini & Reichman, 2000). This article explores the difference in material hardships (specifically struggling to pay household bills, experiencing utility and/or phone disconnection, food stamp participation) between families with children with limiting health conditions (defined as physical, learning, mental, or chronic health conditions that limits participation in the usual kinds of activities done by most children his/her age) and those with children without limiting health conditions. ...
... Another important consideration is the cumulative effect of having more than one child with a limiting health condition. Three percent of U.S. households have more than one child with a disabling health condition and although the research on these individuals is limited, it suggests that material hardship is more pronounced in these households (Ghosh & Parish, 2013). One study of United Kingdom households (Lawton, 1998a(Lawton, , 1998bTozer, 1999) found that compared to families with only one disabled child, families with more than one disabled children are less likely to use respite care, less likely to have family nearby or receive help from family, and are less likely to have a single worker that coordinates their care. ...
... The second goal of the study was to assess the extent of material hardship among low-income families of children with disabilities that receive SSI, and how they compare with that of other low-income families raising children with and without disabilities. Households raising children with disabilities experience higher rates of income poverty compared to their non-disabled peers (Emerson & Hatton, 2009;Fujiura & Yamaki, 2000;Ghosh & Parish, 2013;Parish, Rose, Grinstein-Weiss, Richman, & Andrews, 2008), and there is some evidence that the causal relationship between poverty and disability is bi-directional (Emerson, 2004;Fujiura & Yamaki, 2000). Living in poverty exposes a child to environmental hazards such as harmful toxins, accidents, infections, inadequate health care, and unsafe living environments that increases risks of childhood disability (Brooks-Gunn & Duncan, 1997;Emerson, 2004). ...
... Families raising children with disabilities incur greater material hardships than families whose children do not have disabilities (Ghosh & Parish, 2013;Parish et al., 2008). Elevated poverty and material hardships among children with disabilities are troubling as it implies that children with disabilities are living in conditions that have been shown to hinder development in typically developing children (Brooks-Gunn & Duncan, 1997). ...
... Our findings indicate that when both a child and an adult have disabilities, households struggle to meet their basic needs. Emerging research shows that households with multiple disabled members experience significantly greater financial strain and material hardships irrespective of the household income poverty level (Ghosh & Parish, 2013). Children are not independent entities but are dependent on their parents for care. ...
Article
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This study analyzes data from the 2004 and 2008 panels of the Survey of Income and Program Participation (SIPP) to examine demographic factors among low-income households with children with disabilities that were associated with greater likelihood of receiving Supplemental Security Income (SSI) program, and their rates of material hardship (n = 444), by comparing them to low-income households with children with disabilities who did not receive child SSI (n = 1,942) and other low-income households that did not have children with disabilities (n = 7,533). Results showed household characteristics, such as those headed by individuals who were single women and Black people and those with less than high school education, and the presence of any working-age adult with disability to be significantly associated with greater likelihood of receiving child SSI. The study also found that controlling for selected demographic characteristics, low-income households with children with disabilities, irrespective of whether or not they received child SSI, experienced significant rates of hardships compared to low-income households without children with disabilities. The study found no evidence that receipt of SSI was associated with reduced material hardships in households with children with disabilities. Implications for policy are discussed.
... Gupta (2007) found that as a group, minorities with disabilities in the United States have fewer resources and less knowledge and understanding of available resources than others. Several researchers have documented the connection between poverty and disability and have explored how the lack of employment, finances, education, transportation, and other resources results in the family's isolation, exclusion, and overall difficulty in the adjustment process (Emerson, 2007;Ghosh & Parish, 2013;Kelly-Moore & Ferraro, 2004;Parish & Cloud, 2006;Parish, Rose, Grinstein-Weiss, Richman, & Andrews, 2008;Terhune, 2005). ...
... In a national context, children with disabilities are more likely to reside in households that are deemed impoverished (Ghosh & Parish, 2013;Parish et al., 2008). Families of children with disabilities face added burdens financially when compared to families of children without disabilities, such as increased therapy costs, specialized day care, and adapting the home environment (Newacheck, Stein, & Bauman, 2003;Parish & Cloud, 2006). ...
... Engaging parents to enhance their level of awareness of federal and state policies that directly impact the child and the overall family system is also a vital role of the social worker. The quality of life of the family becomes compromised if policies intended to improve the outcomes of children and youth with disabilities are not effectual in moving the children along in the areas of education, health, and transition to adulthood, most commonly (Ghosh & Parish, 2013;Ihara, Wolf-Branigin, White, 2012;Okumura, Saunders, & Rehm, 2015). ...
Article
Over time, groundbreaking changes in societies’ views and treatment of persons with disabilities, along with significant legislative and policy changes, have impacted the quality of life of African-American families raising children with disabilities. This article presents some of the challenges and inequities faced by African-American families that impact their quality of life using critical race theory (CRT). Also, it reviews results obtained by a study of 123 African-American families raising children with disabilities. The article offers implications for policy and practice and discusses the role for social workers in addressing disparities in healthcare and other areas.
... And, notably, reporting only on poverty rates consistently underestimates material hardship in families who have a child with a limiting health condition because hardship can be found in households with incomes above the poverty line [10]. Households raising multiple children with disabilities have been found to be even more likely to experience material hardship [13]. ...
... Given the close relationship between child health and nutrition, with over-and under-nutrition both contributing to medical problems, it is critical to understand the risk of food insecurity in households with vulnerable children with limiting health conditions. Very limited prior research on this topic exists and uses National Survey of America's Families data collected between 2000 and 2002 or Survey of Income and Program Participation data collected between 2004 and 2008 [10] [13]. This study provides particular value in that it utilizes data collected between 2008-2011, which was during and after the severe economic downturn making it especially revealing of the contemporary experience of family material hardship. ...
Article
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Food insecurity in US households with children with limiting health conditions was compared to households with children without limiting health conditions, controlling for demographic va-riables. Multivariable logistic regression was used to calculate the odds ratios. Data from the 2008-2011 Making Connections Survey (N = 1940) of households with children in seven high po-verty communities in the US were used. Having a child with a limiting health condition made a household's odds 1.41 times (95% C.I., 1.110, 1.790) more likely to be food insecure. When there are two or more children with limiting conditions in the household, the odds of food insecurity are 1.67 times (95% CI, 1.16, 2.40), higher than a family with no children with a disabling health con-dition. Families with children with limiting health conditions in high poverty communities are es-pecially at risk of experiencing food insecurity, which can complicate health conditions. Nutrition assistance programs are vital to keep children and families food secure.
... Stress (Uğuz, Toros, İnanç, & Çolakkadıoğlu, 2004), continuous anxiety (Bahar, Bahar, Savaş, & Parlar, 2009;İşcan & Malkoç, 2017) depression (Bahar et al., 2009;Balki & Canbay, 2012;Demir, Özcan, & Kızılırmak, 2010;Eroğlu, Akbaba, Adıgüzel, & Peker, 2014;Ghosh & Parish, 2013;Toros, 2002;Uğuz et al., 2004), and helplessness (Bahar et al., 2009) levels have been found to significantly increase in parents of children who have developmental disabilities and need special education. Parents having children with disabilities (PHCDs) expressed a need for psycho-social support, and particularly mothers reported an increase in their levels of stress, anxiety and depression more than those of fathers (Aybar, 2014). ...
... Social and expert support, and financial contributions provided for the children with severe disabilities receiving home care service decrease the level of hopelessness (Erdoğan, 2013). In addition, families' income levels and the governmental or institutional support they receive are known to affect their well-being and feelings (Ghosh & Parish, 2013). Psychological well-being can be affected by a lot of variables. ...
Article
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Bu arastirmanin amaci; engelli cocuga sahip anne ve babalarin (ECAB) yilmazlik, oznel iyi olus ve evlilik uyumlarinin gozlenen psikolojik semptomlar ve basa cikma becerileri kapsaminda iliskili gorulen degiskenlerle incelenmesidir. ECAB’larin yilmazlik ve oznel iyi oluslari; evlilik uyumu, depresyon, anksiyete, umutsuzluk, basa cikma, catisma cozme becerileri, kontrol algisi, incinebilirlik ve yasam doyumu duzeyi ile ele alinarak engelli cocuga sahip olmayan aileler ile karsilastirilmistir. Arastirma betimsel model icerisinde araci model test edilerek ve multinominal lojistik regresyon analizi ile iliskili cok sayida degisken genis bir spektrumda ve bu konuda yapilan calismalara oranla goreli buyuk bir orneklem ile yurutulmustur. Arastirma grubu Ankara, Antalya, Erzurum, Giresun, Gumushane, Istanbul, Ordu, Samsun ve Trabzon illerinde Milli Egitim Bakanligina bagli olarak en az bes yildir hizmet veren rehabilitasyon merkezinden cocuklarina destek egitimi alan ve evlilikleri devam eden 530ciftten(1.060 anne ve baba) olusturmaktadir. Kontrol grubu 442 evli cift (884 anne ve babadan) olusmaktadir. Arastirmanin verileri SPSS ve AMOS programlari ile analiz edilmistir. Analiz islemleri icin SOBEL, MultinominalLojistik Regresyon, t testi kullanilmistir. Engel turu, engel turunun derecesi, algilanan sosyal destek ve yilmazlik duzeyi baglaminda elde edilen anlamli sonuclar aile rehberligi, danismanligi, psiko-egitim kapsaminda tartisilmistir.
... Poverty rates are high in households raising children with disabilities compared with those of their nondisabled peers. Recent data indicate that 47 percent of children with disabilities live in families with income below twice the federal poverty level, markedly higher than the 37 percent rate for nondisabled children (Ghosh & Parish, 2013). In addition to lacking adequate income, nearly threefourths of poor and low-income families of children with disabilities experience real deprivation, by way of food insecurity, housing instability, and disconnection of utilities (Parish, Rose, Andrews, Grinstein-Weiss, & Richman, 2008). ...
... Two cross-sectional studies (DeRigne, Quinn, Stoddard-Dare, & Mallett, 2014;Parish, Rose, Grinstein-Weiss, Richman, & Andrews, 2008) found that households including children with disabilities have higher odds of food insecurity than other households. However, neither of these studies controlled for adult disability status, despite its relationship to food insecurity;this is particularly problematic because previous research has found that one fourth of households that include a child with disabilities also include a disabled adult, and that more than one third of households with two or more disabled children include at least one disabled adult (Ghosh & Parish, 2013). This suggests possible confounding if analyses do not address the disability status of adults living in these families. ...
Article
The authors examined food insecurity in households including children with disabilities, analyzing data from the 2004 and 2008 panels of the Survey of Income and Program Participation, which included 24,729 households with children, 3,948 of which had children with disabilities. Logistic regression models were used to estimate the likelihood of food insecurity after adjusting for adult disability status, income, and other sociodemographic factors. Compared to other households with children, those including children with disabilities were more likely to report household food insecurity of any kind, very low household food security, and child food insecurity. Families raising children with disabilities were also more likely to receive Supplemental Nutrition Assistance Program benefits. These results suggest that children with disabilities face an increased risk of experiencing food insecurity and that there is a pressing need to improve the safety net system for these children.
... Studies spanning the previous 15 years on this topic document the increased prevalence rates of maltreatment among children with disabilitiescompared to non-disabled peers (Algood, Hong, Gourdine, & Williams, 2011;Manders& Stoneman, 2009;Orelove, Hollahan, & Myles, 2000;Sullivan & Knutson, 2000).In a more recent study of different levels of children's functioning (i.e., ranging from mild to severe impairments on different indices of cognitive, language, and social skills), the authors noted that risk for physical abuse varied based on the different domains of functioning and the level of impairment specific to these domains (Helton & Cross, 2011). As the authors note, this calls for research to examine risks attendant to specific types of disabilities, which is also echoed by Algood and colleagues (2011) who examined the risks present within multiple spheres of families' ecological framework when caring for a child with disabilities.Moreover, Ghosh and Parish (2013) examined the economic circumstances of families who are raising one or more children with a disability, finding an association between households with a child(ren) who has a disability and the households' income levels. In comparison to households without a child with a disability, for households where a child with a disability resided, they were significantly more likely to be at or below the federal poverty A c c e p t e d M a n u s c r i p t DEVELOPMENTAL DISABILITIES IN CHILD WELFARE 5 level.This underscores the compromised access to resources that many families in these circumstances may experience. ...
Article
Using data from the National Survey of Child and Adolescent Well-being (NSCAW), this study explores the characteristics of child welfare involvement for children (N = 639; aged 3–17.5 years) with at least one developmental disability. In addition, a central focus of this exploration was to examine respective differences in how caregivers and caseworkers initiated referrals for services for children with disabilities. The sample was divided into three exclusive groups based on type of developmental disability: learning disability (weighted percentage 70.3%); Mental Retardation (now referred to as Intellectual Disability), Downs Syndrome, or; developmental delay (weighted percentage 1.8%); and presence of multiple types of disabilities, including autism (weighted percentage 27.9%). Results from the logistic regression analyses indicate children in this population who are placed in out-of-home care receive more referrals than those residing in-home with biological caregivers; older children and children with multiple disabilities are also more apt to obtain referrals to formal assessments. On the other hand, children who were considered in the “other” race category (includes children who identify as: multi-racial; Asian; Pacific Islander; Native American) were significantly less likely to be referred for a formal assessment. Regarding the association between specific maltreatment type and assessment referrals, children with reports of emotional maltreatment had significantly higher odds of being referred for formal assessments.
... disabilities (Parish, Rose & Swaine, 2010) multiple youth with disabilities (Ghosh & Parish, 2013) and youth with special health care needs (Parish, Rose, Dababnah, Yoo & Cassiman, 2012) are also noted. Also of note are the challenges to the financial well-being of single workingage mothers of youth with disabilities (Parish, Rose, Swaine, Dababnah & Marya, 2012). ...
Article
Existing literature suggests that youth with disabilities are known to be at increased risk of maltreatment in the form of abuse and/or neglect. Little is known, however, about the experiences of youth with disabilities who are living in foster care or who are supervised by child protection authorities. This study establishes a baseline estimate of the prevalence of youth with disabilities living in foster care, documents reasons for child protection system involvement, identifies placement types while youth are in care and explores case outcomes. This cross-sectional, exploratory study draws on data from the 2012 Adoption and Foster Care Reporting System (AFCARS) for foster youth in 50 states, the District of Columbia and Puerto Rico. A sample of youth with disabilities (N = 36.492) and a comparison group without disabilities (N = 601.539) were identified. Findings about demographics, reasons for child removal, foster care placements, permanency planning goals and case outcomes are presented. Findings have implications for the prevention the removal of youth from caregivers, the need for family supports to prevent foster care involvement, the promotion of community inclusion of foster youth while in foster care and the need for inter-system collaboration at the transitional age stage.
... disabilities (Parish, Rose & Swaine, 2010) multiple youth with disabilities (Ghosh & Parish, 2013) and youth with special health care needs (Parish, Rose, Dababnah, Yoo & Cassiman, 2012) are also noted. Also of note are the challenges to the financial well-being of single workingage mothers of youth with disabilities (Parish, Rose, Swaine, Dababnah & Marya, 2012). ...
... Further, the standard cost of living for people with disabilities is higher than for people without (Clements and Read 2008; Centre for Independent Living 2011). Whilst households in which children with disabilities reside, experience greater material hardship and are more likely to be poor (Ghosh and Parish 2013). ...
Article
Human rights and social justice have been the traditional mission of social work. In 2008, social workers in Ireland began operating within the greatest period of economic recession since the 1930s. This recession poses a serious threat to the human rights of conventional social work clientele. Simultaneously, a dearth of articles has been published which address the topic. The present paper provides a focused commentary on the literature through the application of an anti-oppressive framework (AOF). The tripartite framework is constructed based upon demarcationist, incorporationist and egalitarian agendas, and was selected for its capacity to address the multifaceted nature of social oppression as identified within the literature. The paper begins with an overview of the impact of the recession on social work practice and its conventional clientele. It then provides a justification and explanation of the elected AOF. Each agenda within the framework is critically evaluated in terms of its broader expression both during and post recession. This evaluation is then used to inform a critical discussion on what lessons may be learned for social work policy and practice moving forward.
... disabilities (Parish, Rose & Swaine, 2010) multiple youth with disabilities (Ghosh & Parish, 2013) and youth with special health care needs (Parish, Rose, Dababnah, Yoo & Cassiman, 2012) are also noted. Also of note are the challenges to the financial well-being of single workingage mothers of youth with disabilities (Parish, Rose, Swaine, Dababnah & Marya, 2012). ...
Article
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The promotion of speedy, permanent outcomes for foster children is a central child welfare policy goal. However, while children with intellectual disability (ID) are at greater risk for child welfare involvement, little is known about their case outcomes. This cross-sectional national study explores between-group foster care outcomes. Foster children with intellectual disability were more likely to have experienced an adoption disruption or dissolution but less likely to be reunified with a parent, primary caretaker or other family member. Implications for interagency collaboration in support of pre and post-foster care discharge support services are discussed.
... At the same time they are more susceptible to poverty than adults given that they more frequently are confined to poorer households . Flynn (2017b) concludes that raising intellectually disabled children within a financial crisis makes for a costly proposition, because their exceptional health care needs can elevate their parents' expenses (Parish 2013), increasing financial vulnerability for families (Ghosh & Parish, 2013). More frequently omitted are those more implicit financial stressors that families with intellectually disabled children may specifically experience, such as higher divorce rates (Emerson, 2004;Flynn, 2017b). ...
Thesis
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This study presents an original contribution to knowledge through investigating the impact and lived experience of economic recession for intellectually disabled young people and their families in Ireland, who use services from the disability sector. This is important because in 2008, Ireland was hit with the greatest period of economic recession since the great depression of the 1930s. As the longevity of the recession played out, research evidences that the nation’s children may have been hardest hit, rendered significantly poorer, and within this, disabled children and their families were a particularly vulnerable socio-economic group, at significantly enhanced risk of poverty. Yet, in the context of a relative wealth of statistical data on the equality impacts of recession, little attention within research has been given to the lived reality, voices and experiences of disabled young people and their families in recessionary Ireland (Flynn, 2011; Flynn, 2017b). In this way, this study interjects into a comprehensively investigated sphere, albeit maintaining exceptionality, by way of focusing on voices and lived experiences. This study used the purest or most classic application of the Biographical Narrative Interpretative Method (BNIM) from initial interviewing through to completion of the ten stage data analysis process. BNIM draws on the assumption that individuals construct meaning in their lives through narrative. Rather than impose categories for exploration, this method allows themes to be engendered by way of participant’s preference. Self-biographising narrative accounts were elicited through BNIM from a sample of 4 intellectually disabled young people (one constituting a pilot study), 4 of their parent/guardians, and 4 disability social work staff members. Congruent with the conventions of BNIM, a smaller sample of 3 cases were chosen for in-depth analysis. The remaining 8 were analysed through a Framework Method that offered a contextual framework of themes and subthemes. In terms of theoretical and epistemological concerns, the study takes up an Affirmative Non- Tragedy Model that situates itself overall within the broad field of Critical Disability Studies. Among study findings, evidence is presented that lived reality for intellectually disabled young people and their families of the impact of recession is a complex and individualistic amalgam of cultural, material and psycho-social factors. These factors, rather than simply co-existing within a static matrix; incited, aggravated and alleviated one another. This interactive process was complex and temporal, but to an extent was predictable. The combined existential experience (or lived reality) of these factors was subjectively felt to be misunderstood by those in positions of power, leading families to seek comfort in the expertise of one another. Findings were numerous, for instance, insufficient cohesion of view points between families, and those perceived to be in power, may be alleviated by better data and a partnership approach that is meaningfully perceptible on the ground level. Furthermore, austerity appeared in reality to galvanise some backward regression in disability service delivery towards more outdated and inappropriate models. Overall, it is hoped that findings from this study can be put to practical usage for disabled young people, their families, and their allies, through both the increment of academic knowledge, and their application as a technology of advocacy. Furthermore, recommendations made by this study outline the specific contribution to knowledge and future practice made by this study, for instance, related to the development of the existing partnership approach to practice, or the generation of more qualitative data.
... Articles frequently used food insecurity scales validated in the study population, such as the 6, 10, or 18 item (30-day or 12-month) core food security module (n = 16), a number used select questions from the core module (n = 13) or unvalidated measures of food hardship such as ability to afford meat or fruit (Shahtahmasebi et al., 2009). Three studies relied on one question to measure food insecurity or insufficiency (Klesges et al., 2001;Wilmoth et al., 2015;Ghosh and Parish, 2013). ...
Article
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A scoping review was conducted, using a social ecological model approach, of 106 articles examining the effect of disability on food access and (in)security. Results of the review show a consistently increased risk of food insecurity among people with disabilities with a higher risk for mental health disabilities, and among disabled younger adults. Mediators of this relationship were underexplored. Disability was mainly conceptualized as a problematic category preventing food access while ignoring disabling social and environmental barriers. A social model of disability can inform future research by acknowledging the role of socio-environmental influences on the production and experience(s) of disability.
... When he mothers' needs are examined, it is seen in the examined sources that these are not only the needs of the parents with children having multiple disabilities, they are but also the needs of all parents with children having disability (Bernstein and Barta, 1988;Berger, 2008;Çetinkaya and Öz, 2000;Eldeniz Çetin and Sönmez, 2018;Kesiktaş, 2012;Kizir and Çiftçi- Tekinarslan, 2017;Sucuoğlu, 1995). Here the point that catches the attention is that, Blackhurst (1993) stated, the problems faced by the parents and their needs differ according to their socio-economic status, the severity and number of the child's deficiency, parents' knowledge level about their children's deficiency (Quot., Sağıroğlu, 2006;Ghosh, Parish, 2013;Sardohan Yıldırım, 2017). The thing suggested at this stage is executing the family trainings by taking the parents' personal characteristics into consideration. ...
Article
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The purpose of this study is to identify the needs of parents with children that have multiple disabilities in early childhood and to suggest a family-centered training model for parents in line with these needs. The research was designed with qualitative research method. Three mothers, who have children with multiple disabilities, living in Mamak district of Ankara province, participated in the research. The data were collected in a group meeting through face-to-face interviews and analyzed by content analysis. The common needs of the mothers who participated in the group meetings were getting information about the disabilities of the children, learning how to increase the physiotherapy hours for them, getting the entire diaper costs of the children from the Social Security Institution and getting help about their transportation to the hospital. As for the personal needs, the mothers desired to get information about the parent–teacher association, epilepsy, visual impairment, hip dislocation and its treatment, shunt use and space therapy and they also wanted to learn whether robots would be useful for their children or not. In line with these results, it can be said that a screening study based on quantitative data should be carried out for further studies through wider participation with children that have different disabilities.
... [1][2][3] These families experience psychological problems (depression, anxiety, guilt, etc), 4,5 physical problems (diabetes, migraine, backache, etc), 6 social problems (being insulted or ostracized) 7,8 and economic problems (poverty or having to leave their job). 9,10 Learning that their children are disabled is a traumatic experience for families. 11 Psychological resilience is defined as the ability to overcome a negative situation or traumatic experience and to adapt to such experience. ...
Article
Purpose This study aims to examine the effects of activity groups using art activities on resilience and related factors in mothers with disabled children. Design and Methods This randomized controlled experimental design study was conducted with 33 mothers (18 in the control and 15 in the intervention group). Findings A statistically significant difference was found between the intervention group's pretest and posttest mean scores on the Resilience Scale for Adults, the Satisfaction with Life Scale, Zarit Burden Interview, and 12‐item General Health Questionnaire scales. Implications for Nursing Practice The psychological activity groups that used art activities were found to increase psychological well‐being and satisfaction with life among the families of disabled children with various types of distress (physical, psychological, economic, and social), as well as reducing their mothers' perceived caregiving burden.
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الملخص: تواجه آسر الأطفال ذوي الإعاقات العقلية ضغوط نفسية كبيرة، وتحديات عديدة بخصوص الرعاية الوالدية وتوفير الدعم الاجتماعي والمادي والأكاديمي والصحي وغيرها من الخدمات الضرورية، كما أن تربية ورعاية الأطفال ذوي الإعاقات بوجه عام والأطفال ذوي الإعاقة العقلية بوجه خاص تعتبر عملية مستمرة مدى الحياة. وبناء على هذا هدفت الدراسة الحالية إلى فحص مستويات الضغوط النفسية عبر الأبعاد الزمنية المختلفة (الماضي، الحاضر، والمستقبل) لدى عينة من أولياء أمور الأطفال ذوي الإعاقة العقلية بسلطنة عمان. كما هدفت الدراسة إلى بحث أثر نوع الطفل ذو الإعاقة (ذكر، انثي)، المستوى التعليمي للوالدين (الأم، والأب)، درجة شدة الإعاقة، وجود حالة إعاقة أخرى في الأسرة على مستوى الضغوط لدى الوالدين. وقد تمثلت أداة الدراسة الرئيسية في مقياس الضغوط النفسية عبر الأبعاد الزمنية تم تطبيقها على عينة من 250 من أولياء أمور الأطفال ذوي الإعاقة العقلية بسلطنة عمان. وقد أظهرت نتائج الدراسة وجود مستوى منخفض من الضغوط النفسية لأسر الأطفال ذوي الإعاقة العقلية عبر الأبعاد الزمنية، وعدم وجود تأثير لنوع للطفل ذو الإعاقة على مستوى الضغوط النفسية للوالدين، وعدم وجود فروق ذات دلالة إحصائية في مستوى الضغوط النفسية تعزى للمستوى التعليمي. وتقدم الدراسة عدد من التوصيات لدعم أسر الأطفال ذوي الإعاقة العقلية في مواجهة الضغوط النفسية.
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In 2008, the Republic of Ireland descended into the deepest period of economic recession since the Great Depression of 70 years before. In the aftershock of recession, research suggests that it has been the nation’s children who have been hit hardest. Within this, intellectually disabled children are considered a particularly vulnerable socio-economic group. Nonetheless, the impact and experience of the recession for intellectually disabled children has received little specific attention within policy and literature, and as a consequence remains poorly understood. This article aims to expand upon discussions by drawing out a number of key themes through a review of the relevant literature. Lessons learned from the review are then used to inform a discussion around policy implications. It is suggested that better pathways to justice and an improved presence of the voices of intellectually disabled children, and their families, at a macro-political level are required moving forward.
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This study reports on findings from 25 semi-structured, individual interviews with participants with visual, hearing, or mobility disabilities in India focusing on stigmatization and resilience, and how they are constructed within Indian sociocultural contexts. Participants’ experiences of disability and stigmatization were alleviated or exacerbated by sociocultural issues, including socioeconomic status, caste, and gender hierarchy. A lack of family support and access to education further reinforced stigmatization. The case from India underscores the importance of addressing these intersectional issues, as well as stigmatization and resilience, to comprehensively support individuals with disabilities. Implications for practice, disability policies, theories, and research are discussed.
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Area probability sampling via U.S. postal addresses was used to select households from seven high poverty U.S. metropolitan areas. In person and telephone interviews with one adult household member were used to determine the odds of delaying or failing to fill a needed prescription for families with a child member with a limiting health condition. Logistic models indicate families with a child with a limiting health condition are 1.57 times more likely to delay or fail to fill a needed prescription, and families with more than one child with a limiting condition are 1.85 times more likely. Implications are set forth.
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In the United States, the Social Security Administration (SSA) provides financial benefits through Supplemental Security Income (SSI) to many individuals with intellectual and developmental disabilities (IDD). Family members and service coordinators (SCs) provide a critical role in applying for SSI on behalf of individuals with IDD. The present study uses a street-level lens to understand the implementation of SSI policy from the perspective of family respondents and SCs based upon their experiences with the application process. Using surveys developed from focus groups and interviews with family members and SCs, the study explores parts of the application process that facilitated success and barriers that hindered the procurement of benefits, and also elicited suggestions for improvement of the process. Survey respondents included 122 family members and 122 SCs in the western region of New York State. Findings reflect experiences at the various steps of the application process including initial applications, interviews and assessments, as well as experiences with SSA workers. Despite several significant differences, a general congruence between family respondents and SCs suggests considerable opportunities for improvement. This study provides a preliminary evaluation of a complex process from two different perspectives, with implications for policy, practice and future research.
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This study presents systematic literature review (SLR) of financial well-being which is crucial for attaining several key UN Sustainable Development Goals 2030 (SDG 1, 3, 10 and 16). After applying the criteria of selection, the study included 133 publications from 79 high-impact journals, using Web of Science (WoS) Core Collection database. Unlike previous studies, the study contributes to the existing body of knowledge by conducting systematic review of financial well-being literature from a holistic perspective and presenting the most recent and up-to-date research findings in the area. VOSviewer, a software tool was used to create bibliometric networks. The results of this systematic review study suggested the following conclusions: (a) financial well-being is a dynamic and multidimensional construct; (b) studies studying antecedents of financial well-being are far more in number than consequences; (c) majority of the previous studies are based on quantitative research methods (112), that is, secondary data research (75); (d) financial well-being has been mostly quantified using subjective measures; (e) the previous studies seems to be dominated by developed countries like the USA, Canada, Germany, and, England posing several limitations in practice; (f) Financial well-being was mostly studied with ‘poverty’, ‘behavior’, ‘income’, ‘health’ and ‘growth’. Limitations and future research directions of the current study are discussed.
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This study analyzes the 2002 wave of the National Survey of America's Families to describe income poverty and material hardship among women with and without disabilities in the United States. Results suggest that women with disabilities experience such hardships as food insecurity, housing instability, inadequate health care, and loss of phone service at rates that are higher than those among nondisabled women. Rates of hardship remain higher even after adjusting for a host of individual characteristics, including marital status,age, race, and education. Although hardship declines as incomes rise for all women, those with disabilities show worse outcomes at every income level and experience substantial levels of hardship well into the middle and upper income ranges. The federal poverty level does not accurately capture women's experiences of material hardship, and these discrepancies are considerably worse among women with disabilities.
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Researchers analyzed the 2002 wave of the National Survey of America's Families, conducted by the Urban Institute and Child Trends, and examined material hardship in families raising children with disabilities. Measures of hardship included food insecurity, housing instability, health care access, and telephone disconnection. The research indicated that families of children with disabilities experienced significantly greater hardship than did other families. As family income rose above the federal poverty level, hardship declined sharply for families of children without disabilities but not for families raising children with disabilities. Thus, the U.S. federal poverty level was found to be a particularly poor predictor of hardship for families raising children with disabilities. Finally, among families of children with disabilities, single-mother and cohabiting-partner families particularly were at risk for experiencing severe hardship. This article also discusses policy and advocacy implications.
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Objective: This study examined the effects on well-being of a spouse's disability among aging parents already serving as caregivers of adult children with severe mental illness or a developmental disability. Methods: The study sample consisted of two groups of participants in the Wisconsin Longitudinal Study of 1957 high school graduates and their randomly selected siblings-those who had a child with a disability (N=227) and a matched comparison group of parents who did not have a child with a disability (N=1,463). The participants were surveyed in 1992-1994 and 2004-2006, and participants with a spouse with a disability in 1992-1994 were excluded from the analysis. The effect of multiple caregiving roles was investigated by using regression analysis. Results: Parents of adult children with severe mental illness were more likely than either parents of adult children with developmental disabilities or the comparison group to report that their spouse developed a disability in the early retirement years. The experience of caring for a spouse with a disability and the experience of caring for an adult child with disabilities had additive effects in eroding the well-being of older adults. Parents of adult children with severe mental illness in general had the lowest levels of well-being. Conclusions: As they move into their retirement years, aging parents who care for children with long-term disabilities are likely to experience multiple caregiving responsibilities. Service providers must address the needs of these aging parents and develop interventions to help them cope and plan for their future.
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This article discusses the contribution American social scientists have made to the study of poverty over the past 25 years as viewed from a comparative perspective. It has two parts. The first concentrates on the measurement of poverty and the fact that the U.S. poverty line remained fundamentally unchanged in that period despite increasingly important deficiencies in the way it was calculated. The second analyzes the broadened scope of U.S. research on the causes of poverty and its growing impact on poverty policy far beyond the United States.
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Although hundreds of studies have documented the association between family poverty and children's health, achievement, and behavior, few measure the effects of the timing, depth, and duration of poverty on children, and many fail to adjust for other family characteristics (for example, female headship, mother's age, and schooling) that may account for much of the observed correlation between poverty and child outcomes. This article focuses on a recent set of studies that explore the relationship between poverty and child outcomes in depth. By and large, this research supports the conclusion that family income has selective but, in some instances, quite substantial effects on child and adolescent well-being. Family income appears to be more strongly related to children's ability and achievement than to their emotional outcomes. Children who live in extreme poverty or who live below the poverty line for multiple years appear, all other things being equal, to suffer the worst outcomes. The timing of poverty also seems to be important for certain child outcomes. Children who experience poverty during their preschool and early school years have lower rates of school completion than children and adolescents who experience poverty only in later years. Although more research is needed on the significance of the timing of poverty on child outcomes, findings to date suggest that interventions during early childhood may be most important in reducing poverty's impact on children.
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Postplacement adaptation was studied in 106 families with a member living in a residential facility. Respondents reported on three broad areas of functioning: involvement with the member in placement, well-being, and perception of placement advantages and disadvantages. Although respondents readily reported both pros and cons of placement, more than 90% concluded that, on balance, the living arrangement was an advantage for themselves, the child, and other family members. Families with children under age 15, contrasted with families of adolescents and adults, visited more often, reported the highest stress and caretaking burden, as well as the lowest marital adjustment and advantage to placement. Families of adults, for whom living away from the natural home is normative, seemed to have adapted well postplacement.
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This study compared the mental and physical health of two groups of black mothers aged 55 years and older: those who were providing care for their adult child with schizophrenia or schizoaffective disorder (N=30) and those who did not have a child with mental illness (N=263). The only demographic variable that was found to differ between the two groups was that the women who were providing care for their adult child with mental illness had more children than the women in the comparison group. Both groups of women had similar mental health status. However, the mothers who were providing care for their adult children with mental illness had higher rates of chronic health conditions, such as high blood pressure, arthritis, and eye problems.
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This paper discusses the contribution made by American social scientists to the study of poverty in the past twenty five years. It has three parts. The first concentrates on the measurement of poverty and the fact that the US poverty line remained unchanged in that period despite its increasingly important deficiencies. Proposals to produce a revised poverty line and an Annual Poverty Report are advanced. The second part traces the change of emphasis in US writing about poverty both in terms of academic emphasis and prescription. The final part considers the policy impact of American work on poverty policy beyond America.
Chapter
Much of the extant literature on siblings and developmental disability fails to take into account methodological variations, syndrome specific characteristics of a disorder, or constellation variables (such as gender or birth order). In addition, the target child is usually the typically developing sibling; little consideration has been given to the impact of a typically developing child on the brother or sister with a disability. In this chapter, we review research related to the development of sibling relationship quality and identify factors that impact sibling outcomes, such as social skills or behavior, for both siblings without disabilities and those with intellectual disability (ID) or neuro-developmental disorders such as autism. In doing so, we propose a conceptual model that considers main effects and moderators (such as genetic influences, family functioning, or cultural expectations) of the target child's adjustment.
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This article presents childhood disability prevalence trends and their interaction with economic status. Estimates derived from National Health Interview Survey data (1983-1996) indicate a significant increase in childhood disability rates. Increased risk for disability was among constituencies defined by poverty and single-parent families. Analysis suggests three dynamics: (a) greater risk in single-parent households, (b) no incremental risk associated with racial or ethnic status after controlling for poverty, and (c) a growing relationship between poverty and risk for disability. Implications were discussed in terms of a "new universe" of disability and the importance of education's involvement in broader national social policy and advocacy.
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Measures of material hardship, which identify households that do not consume minimal levels of very basic goods and services such as food, housing, and medical care, provide important information about well-being. The research discussed in this article used nationally representative data from the Survey of Income and Program Participation to document the prevalence of material hardship in the U.S. population and in several subgroups in 1995. More than 10 percent of Americans experienced at least one hardship in 1995, and the most common hardships were medical need and food insufficiency. Poor individuals, children, African Americans, Hispanics, and those in single-parent households were particularly vulnerable to hardship. In addition, there is evidence that working households are more vulnerable to hardship - especially medical need - than measures of income-poverty suggest.
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Reviews and synthesizes what is known about the drop in Medicaid and food stamp participation, as well as the reasons for the decline and potential strategies for increasing participation. The report finds evidence of barriers to access and participation, some predating welfare reform and some related to TANF, and points out the need to better understand the operations of local offices that are successful in enrolling and retaining clients in these programs.
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Although there has been much discussion in the United States regarding the definition of economic poverty, we continue to measure poverty almost exclusively in terms of current income. However, there are many reasons to supplement measures of income-poverty with measures of material hardship. First, material hardship and income-poverty represent alternative conceptions of poverty. Second, material hardship is of both normative and instrumental concern. Third, hardship measures are useful tools for policy analysis, particularly in the context of welfare reform. Specific recommendations for developing and using hardship measures are presented.
Article
ABSTRACT—Food insecurity, defined as limited or uncertain availability of nutritionally adequate and safe foods or limited or uncertain ability to acquire acceptable foods in socially acceptable ways, is still a problem in the United States. It is associated with poor parenting practices, poor health, and socioemotional and cognitive/academic difficulties in children. This review synthesizes some of these findings and suggest links among these outcomes. In this endeavor, it describes the concept of food insecurity and propose a mediational framework to anchor our discussions. Finally, it examines the implications of the review for research and policy.
Article
The caregiving environment experienced by 243 premature, low birthweight (LBW) children living in poverty was examined to determine whether the quality of care such children receive affords them some measure of protection from the generally deleterious consequences of poverty and prematurity. Only 26 children were identified as functioning in the normal range for cognitive, social/adaptive, health, and growth parameters at age 3. These children, who showed early signs of resiliency, differed from nonresilient children in that they were receiving more responsive, accepting, stimulating, and organized care. They were also living in safer, less crowded homes. 6 “protective” aspects of caregiving were identified and used as part of a cumulative protection index. Children with less than 3 protective aspects of caregiving present at age 1 had only a 2% probability of being resilient, and only a 6% probability if fewer than 3 were present at age 3. Overall, premature LBW children born into conditions of poverty have a very poor prognosis of functioning within normal ranges across all the dimensions of health and development assessed. However, those raised in a setting with 3 or more protective factors were more likely to show early signs of resiliency.
Article
This study used a sample of single and married mothers with children under the age of 20 drawn from the 1992 and 1993 panels of the Survey of Income and Program Participation to examine one facet of the economic implications a child with disabilities brings to a family. Specifically, the choice of women with children to work full time, part time, or not at all was estimated as a function of individual and family characteristics, including the number and ages of children with disabilities. The presence of young children, with or without disabilities, has a significant negative influence on the work choice of both single and married mothers. However, once children enter elementary school, single mothers with disabled or nondisabled children and married mothers with nondisabled children are significantly more likely to enter the labor market or increase their labor market hours than are married mothers of school-age children with disabilities.
Article
In this chapter, we argue that research related to families supporting people with intellectual or developmental disabilities should pay greater attention to issues relating to their socioeconomic position and their experience of poverty. To these ends we (1) clarify our use of the terms “socioeconomic position” and “poverty”; (2) briefly review the literature on the relationship between socioeconomic position, poverty, and the prevalence of intellectual and developmental disabilities; (3) briefly review the literature on the impact of exposure to low socioeconomic position and/or poverty; (4) provide an overview of current research addressing issues relating to socioeconomic position and poverty and family functioning and the well-being of family members with intellectual or developmental disabilities; and (5) discuss key methodological and conceptual issues associated with incorporating socioeconomic position into family research. We conclude by discussing key conceptual and methodological issues relevant to incorporating the study of socioeconomic position and poverty within family research.
Article
We examined the association between state Medicaid and State Children's Health Insurance Program (SCHIP) income eligibility and the financial burden reported by low-income families raising children with special health care needs (CSHCN). Data on low-income CSHCN and their families were from the National Survey of Children With Special Health Care Needs (N = 17039), with a representative sample from each state. State Medicaid and SCHIP income-eligibility thresholds were from publicly available sources. The 3 outcomes included whether families had any out-of-pocket health care expenditures during the previous 12 months for their CSHCN, amount of expenditure, and expenditures as a percentage of family income. We used multilevel logistic regression to model the association between Medicaid and SCHIP characteristics and families' financial burden, controlling state median income and child- and family-level characteristics. Overall, 61% of low-income families reported expenditures of >$0. Among these families, 30% had expenses between $250 and $500, and 34% had expenses of more than $500. Twenty-seven percent of the families reporting any expenses had expenditures that exceeded 3% of their total household income. The percentage of low-income families with out-of-pocket expenses that exceeded 3% of their income varied considerably according to state and ranged from 5.6% to 25.8%. Families living in states with higher Medicaid and SCHIP income-eligibility guidelines were less likely to have high absolute burden and high relative burden. Beyond child and family characteristics, there is considerable state-level variability in low-income families' out-of-pocket expenditures for their CSHCN. A portion of this variability is associated with states' Medicaid and SCHIP income-eligibility thresholds. Families living in states with more generous programs report less absolute and relative financial burden than families living in states with less generous benefits.
Article
Understanding how financial well-being changes through the life course of caregiving parents of children with developmental disabilities is critically important. We analyse SIPP (U.S. Census Bureau) data to describe income poverty, asset poverty, income, net worth, and liquid assets of US parents (N = 753) of children with developmental disabilities. Income and asset poverty was greatest for the youngest and oldest parents. Liquid assets were relatively flat across cohorts, while net worth declined sharply for elderly parents. Income was highest among parents aged 45-54. These findings signal significant financial vulnerability among parents of children with developmental disabilities. Policy makers should consider targeted measures to improve the financial well-being of these parents, particularly the youngest and oldest.
Article
Public concern with poverty derives in large part from the assumption that low income families cannot afford necessities. Yet official poverty statistics focus on measuring income, not on measuring material hardship. Two surveys of Chicago residents measure whether families could afford food, housing and medical care. A family's official income-to-needs ratio explained 24 percent of the variance in the amount of material hardship it reported. Adjustments for family size, age, health, noncash benefits, home ownership, and access to credit explain another 15 percent. Variations in permanent income explain almost none of the remaining variance in hardship. Among families with the same official income-to-needs ratio, material hardship varies by age, family size and composition.
Article
Using two waves of data from the Child Development Supplement in the Panel Study of Income Dynamics, this study investigates whether parental characteristics (parenting stress, parental warmth, psychological distress, and parent's self-esteem) mediate household food insecurity's relations with child behavior problems. Fixed-effects analyses examine data from a low-income sample of 416 children from 249 households. This study finds that parenting stress mediates the effects of food insecurity on child behavior problems. However, two robustness tests produce different results from those of the fixed-effects models. This inconsistency suggests that household food insecurity's relations to the two types of child behavior problems need to be investigated further with a different methodology and other measures.
Article
Incl. bibl. notes, index.
Article
The apparently large genetic contribution to the aetiology of mental illness presents a formidable puzzle. Unlike common physical disorders, mental illness usually has an onset early in the reproductive age and is associated with substantial reproductive disadvantage. Therefore, genetic variants associated with vulnerability to mental illness should be under strong negative selection pressure and be eliminated from the genetic pool through natural selection. Still, mental disorders are common and twin studies indicate a strong genetic contribution to their aetiology. Several theories have been advanced to explain the paradox of high heritability and reproductive disadvantage associated with the same common phenotype, but none provides a satisfactory explanation for all types of mental illness. At the same time, identification of the molecular substrate underlying the large genetic contribution to the aetiology of mental illness is proving more difficult than expected. The quest for genetic variants associated with vulnerability to mental illness is predicated upon the common disease/common variant (CDCV) hypothesis. On the basis of a summary of evidence, it is concluded that the CDCV hypothesis is untenable for most types of mental illness. An alternative evolution-informed framework is proposed, which suggests that gene-environment interactions and rare genetic variants constitute most of the genetic contribution to mental illness. Common mental illness with mild reproductive disadvantage is likely to have a large contribution from interactions between common genetic variants and environmental exposures. Severe mental illness that confers strong reproductive disadvantage is likely to have a large and pleiotropic contribution from rare variants of recent origin. This framework points to a need for a paradigm change in genetic research to enable major progress in elucidating the aetiology of mental illness.
Article
In this paper, we demonstrate that the empirical evidence is exactly the opposite of the theo-retical predictions. With total household expenditure per capita (PCE) held constant, expenditure per head on food falls with the number of heads. The result appears to be quite general; we find it not only in the United States, but also in Britain and France, and more surprisingly, in Taiwan, Thailand, Pakistan and among African households in South Africa. The size of the effect is also contrary to the theoretical analysis. In the United States, Britain, and France, food consumption falls by only a small amount as the scale of the household increases.
Article
The family history method was used to obtain developmental, social, and psychiatric histories on the 67 adult siblings of 37 autistic probands. Two of 67 siblings (3.0%) were autistic, three siblings (4.4%) had severe social dysfunction and isolation, 10 (15%) had cognitive disorders, and 10 (15%) had received treatment for affective disorder. This study is the first to investigate the frequency of disorders in the adult siblings of autistic probands. These results suggest aggregation of a variety of neuropsychiatric disorders in the siblings of autistic individuals.
Article
Prenatal care has long been endorsed as a means to identify mothers at risk of delivering a preterm or growth-retarded infant and to provide an array of available medical, nutritional, and educational interventions intended to reduce the determinants and incidence of low birth weight and other adverse pregnancy conditions and outcomes. Although the general notion that prenatal care is of value to both mother and child became widely accepted in this century, the empirical evidence supporting the association between prenatal care and reduced rates of low birth weight emerged slowly and has been equivocal. Much of the controversy over the effectiveness of prenatal care in preventing low birth weight stems from difficulties in defining what constitutes prenatal care and adequate prenatal care use. While the collective evidence regarding the efficacy of prenatal care to prevent low birth weight continues to be mixed, the literature indicates that the most likely known targets for prenatal interventions to prevent low birth weight rates are (1) psychosocial (aimed at smoking); (2) nutritional (aimed at low prepregnancy weight and inadequate weight gain); and (3) medical (aimed at general morbidity). System level approaches to impact the accessibility and the appropriateness of prenatal health care services to entire groups of women and population-wide health promotion, social service, and case management approaches may also offer potential benefits. However, data on the effectiveness of these services are lacking, and whether interventions focused on building cohesive, functional communities can do as much or more to improve low birth weight rates as individualized treatments has yet to be explored. The ultimate success of prenatal care in substantially reducing current low birth weight percentages in the United States may hinge on the development of a much broader and more unified conception of prenatal care than currently prevails. Recommendations for actions to maximize the impact of prenatal care on reducing low birth weight are proposed both for the public and for the biomedical, public health, and research communities.
Article
The caregiving environment experienced by 243 premature, low birthweight (LBW) children living in poverty was examined to determine whether the quality of care such children receive affords them some measure of protection from the generally deleterious consequences of poverty and prematurity. Only 26 children were identified as functioning in the normal range for cognitive, social/adaptive, health, and growth parameters at age 3. These children, who showed early signs of resiliency, differed from nonresilient children in that they were receiving more responsive, accepting, stimulating, and organized care. They were also living in safer, less crowded homes. 6 "protective" aspects of caregiving were identified and used as part of a cumulative protection index. Children with less than 3 protective aspects of caregiving present at age 1 had only a 2% probability of being resilient, and only a 6% probability if fewer than 3 were present at age 3. Overall, premature LBW children born into conditions of poverty have a very poor prognosis of functioning within normal ranges across all the dimensions of health and development assessed. However, those raised in a setting with 3 or more protective factors were more likely to show early signs of resiliency.
Article
First-degree relatives of 99 autism probands and of 36 Down's syndrome controls were assessed with standardised tests of intellectual functioning, reading, and spelling. Higher mean verbal IQ scores, and discrepancies in favour of verbal scores, were characteristic of autism relatives. No consistent differences were found on performance scales, reading, and spelling tests. Among autism relatives, siblings affected with the broad phenotype of autism had significantly lower IQ scores and poorer reading and spelling performances than unaffected siblings. However, the small size of the cognitive difference and the lack of a distinctive cognitive profile indicates that standardised cognitive measures used in this study are unlikely to improve the operationalised definition of the broad phenotype of autism. The slightly superior verbal performance of relatives in the autism group might represent some form of heterozygote advantage.
Article
Helping high-risk pregnant women obtain prenatal care early is the main policy goal of most U.S. publicly funded programs aimed at reducing the incidence of low birth weight and infant mortality It is therefore crucial to understand the factors that influence when women initiate prenatal care. The effects of psychosocial and demographic risk factors on the timing of entry into prenatal care were estimated using data on roughly 90,000 Medicaid recipients who participated in New Jersey's HealthStart prenatal care program. Overall, 37% of women began prenatal care in the first trimester. Multivariate logistic regression indicated that women who lived in poor housing conditions and those who smoked, drank or used hard drugs had a reduced likelihood of entering care early (odds ratios, 0.8-0.9), while those who had clinical depression or who experienced domestic violence or abuse had elevated odds of early entry (1.1-1.2). The risk factor with the greatest impact on the timing of prenatal care was the wantedness of the pregnancy; women whose pregnancy was unwanted had dramatically reduced odds of entering care early (0.4). Separate analyses of women of varying racial and ethnic backgrounds demonstrated the differential effects of risk factors, the importance of including ethnicity with race and the universal impact of wantedness across racial and ethnic groups. Entry into prenatal care for at-risk women is affected by factors from multiple domains. It is important for prenatal programs to recognize the complexity of the issue as well as the barriers that different subgroups of women face.
Article
We contrasted parents who had a child with a developmental disability, a serious mental health problem, and a normative comparison group with respect to parental attainment and well-being at mid-life. Data are from the Wisconsin Longitudinal Study, collected when the respondents were 18, 36, and 53 or 54, on average. Although similar at age 18, group patterns of attainment and well-being diverged thereafter. Parents of a child with a developmental disability had lower rates of employment, larger families, and lower rates of social participation but were similar to parents without a child with a disability in educational and marital status, physical health, and psychological well-being. Parents whose child had a serious mental health problem had normative patterns of educational and occupational attainment and marriage, but elevated levels of physical symptoms, depression, and alcohol symptoms at mid-life.
Article
The fragile X syndrome, an X-linked dominant disorder with reduced penetrance, is one of the most common forms of inherited mental retardation. The cognitive, behavioral, and physical phenotype varies by sex, with males being more severely affected because of the X-linked inheritance of the mutation. The disorder-causing mutation is the amplification of a CGG repeat in the 5' untranslated region of FMR1 located at Xq27.3. The fragile X CGG repeat has four forms: common (6-40 repeats), intermediate (41-60 repeats), premutation (61-200 repeats), and full mutation (>200-230 repeats). Population-based studies suggest that the prevalence of the full mutation, the disorder-causing form of the repeat, ranges from 1/3,717 to 1/8,918 Caucasian males in the general population. The full mutation is also found in other racial/ethnic populations; however, few population-based studies exist for these populations. No population-based studies exist for the full mutation in a general female population. In contrast, several large, population-based studies exist for the premutation or carrier form of the disorder, with prevalence estimates ranging from 1/246 to 1/468 Caucasian females in the general population. For Caucasian males, the prevalence of the premutation is approximately 1/1,000. Like the full mutation, little information exists for the premutation in other populations. Although no effective cure or treatment exists for the fragile X syndrome, all persons affected with the syndrome are eligible for early intervention services. The relatively high prevalence of the premutation and full mutation genotypes coupled with technological advances in genetic testing make the fragile X syndrome amenable to screening. The timing as well as benefits and harms associated with the different screening strategies are the subject of current research and discussion.
Article
Growing numbers of children and adolescents have long-term disabilities, but they often are excluded from health services research on people with disabilities because of concerns about risks and the special problems in studying this population. As a result, we have little information about the epidemiology and characteristics of children and adolescents; the use, organization, and financing of services for them; the best practices; methods of assessing and improving care; ways of keeping them safe and protecting them from medical errors; and basic issues of long-term clinical management. By deciding on specific criteria for their inclusion, recent research has helped clarify the definition of children's chronic health conditions (McPherson, Arango, Fox, et al. 1998; Perrin, Newacheck, Pless, et al. 1993; Stein, Bauman, Westbrook, et al. 1993). Further work has improved the systematic specification and identification of this population and indicated how different purposes (e.g., epidemiologic research or program eligibility) may determine who is included (Newacheck, Strickland, Shonkoff, et al. 1998; Stein, Westbrook, and Bauman, 1997). Growing numbers of children and adolescents have long-term disabilities. Research on the epidemiology, clinical care and its improvement, organization, and financing of care for children with disabilities is very limited. Given the cost burden of the nation's chronic diseases and disabilities, the lack of investigation into necessary clinical activities seems remarkable. This article reviews recent research on health services relating to children and adolescents with disabilities and outlines a research agenda in clinical and health services for this population in these study areas.
Article
Poor children confront widespread environmental inequities. Compared with their economically advantaged counterparts, they are exposed to more family turmoil, violence, separation from their families, instability, and chaotic households. Poor children experience less social support, and their parents are less responsive and more authoritarian. Low-income children are read to relatively infrequently, watch more TV, and have less access to books and computers. Low-income parents are less involved in their children's school activities. The air and water poor children consume are more polluted. Their homes are more crowded, noisier, and of lower quality. Low-income neighborhoods are more dangerous, offer poorer municipal services, and suffer greater physical deterioration. Predominantly low-income schools and day care are inferior. The accumulation of multiple environmental risks rather than singular risk exposure may be an especially pathogenic aspect of childhood poverty.
Article
We compared the economic well-being and maternal employment of parents whose children did or did not have developmental disabilities. This prospective study is a secondary analysis of data from the Wisconsin Longitudinal Study, collected when respondents were aged 18, 36, and 53, on average. Although the two groups were similar at age 18, income and savings differed markedly by age 53, but statistically significant differences were not found on other measures. Mothers of children with disabilities were less likely to have job spells lasting more than 5 years and had lower earnings when they were 36 years old. Further, there was a trend for them to be less likely to have full-time jobs as their children grew older.
Objectives To provide the first nationally representative data on total health care expenses, out-of-pocket health care expenses, and information on the extent to which out-of-pocket expenses are financially burdensome for families of children with special health care needs (CSHCN). To also compare utilization and expenditure patterns for children with and without special health care needs. Design We used data from the 2000 Medical Expenditure Panel Survey (MEPS). We present univariate, bivariate, and multivariate statistics on utilization and expenditures adjusted for the complex sample design. Participants The 2000 MEPS data set contains 6965 children younger than 18 years. Using the CSHCN definition adopted by the federal Maternal and Child Health Bureau and operationalized using the CSHCN Screener, 949 children (15.6%) were identified as children with special health care needs. Main Outcome Measures Compared with other children, CSHCN had 3 times higher health care expenditures ($2099 vs $628; P<.01). The 15.6% of CSHCN accounted for 42.1% of total medical care costs (excluding dental costs) and 33.6% of total health care costs (including dental costs) attributed to children in 2000. Families of CSHCN were best protected against inpatient hospital care expenses and most exposed to dental care expenses. Families of CSHCN experiencing high out-of-pocket expenses (exceeding 5% of family income) were approximately 11 times more likely to be from households with incomes below 200% of the federal poverty level (odds ratio, 10.9; 95% confidence interval, 3.55-33.76) than to be from families with incomes at or above 400% of the federal poverty level. Conclusions Families with CSHCN experience much higher expenditures, including out-of-pocket expenditures, than other children. Insurance plays an important protective role for families of CSHCN, but it still provides incomplete protection. Health policy changes that would extend the breadth and depth of insurance coverage are needed to ensure that all families of CSHCN are protected against burdensome expenses.
Article
The genetic study of ADHD has made considerable progress. Further developments in the field will be reliant in part on identifying the most appropriate phenotypes for genetic analysis. The use of both categorical and dimensional measures of symptoms related to ADHD has been productive. The use of multiple reporters is a valuable feature of the characterization of psychopathology in children. It is argued that the use of aggregated measures to characterize the ADHD phenotype, particularly to establish its pervasiveness, is desirable. The recognition of the multiple comorbidities of ADHD can help to isolate more specific genetic influences. In relation to both reading disability and conduct disorder there is evidence that genes may be involved in the comorbid condition that are different from pure ADHD. To date, progress with the investigation of endophenotypes for ADHD has been disappointing. It is suggested that extending such studies beyond cognitive underpinnings to include physiological and metabolic markers might facilitate progress.
Article
To examine the role of insurance coverage in protecting families of children with special health care needs (CSHCN) from the financial burden associated with care. Data from the 2001 National Survey of Children with Special Health Care Needs were analyzed. We built 2 multivariate regression models by using "work loss/cut back" and "experiencing financial problems" as the dependent variables, and insurance status as the primary independent variable of interest while adjusting for income, race/ethnicity, functional limitation/severity, and other sociodemographic predictors. Approximately 29.9% of CSHCN live in families where their condition led parents to report cutting back on work or stopping work completely. Families of 20.9% of CSHCN reported experiencing financial difficulties due to the child's condition. Insurance coverage significantly reduced the likelihood of financial problems for families at every income level. The proportion of families experiencing financial problems was reduced from 35.7% to 23.0% for the poor and 44.9% to 24.5% for low-income families with continuous insurance coverage (P < .01 for both comparisons). Similarly, the proportion of parents having to cut back or stop work was reduced from 42.8% to 35.9% for the poor (P < .05) and 43.5% to 33.9% for low-income families (P < .01). Continuous health insurance coverage provides protection from financial burden and hardship for families of CSHCN in all income groups. This evidence is supportive of policies designed to promote universal coverage for CSHCN. However, many poor and low-income families continue to experience work loss and financial problems despite insurance coverage. Hence, health insurance should not be viewed as a solution in itself, but instead as one element of a comprehensive strategy to provide financial safety for families with CSHCN.
Article
Young children with disabilities are significantly more likely to live in poverty than their peers without disabilities. Exposure to poverty creates additional risk of adverse outcomes for these vulnerable children. In this article, the following key circumstances contributing to this increased risk of impoverishment are analyzed: elevated costs of raising children with disabilities, low levels of public income transfer benefits, difficulty balancing parental employment and caregiving responsibilities, unavailable or high-cost child care, and inadequate leave time to permit parents to meet their children's episodic care needs. The implications of these issues for social work practice and advocacy needs are discussed.
Article
Although research has clearly established that low family income has negative impacts on children's cognitive skills and social-emotional competence, less often is a family's experience of material hardship considered. Using the Early Childhood Longitudinal Study, Kindergarten Class of 1998-1999 (N=21,255), this study examined dual components of family income and material hardship along with parent mediators of stress, positive parenting, and investment as predictors of 6-year-old children's cognitive skills and social-emotional competence. Support was found for a model that identified unique parent-mediated paths from income to cognitive skills and from income and material hardship to social-emotional competence. The findings have implications for future study of family income and child development and for identification of promising targets for policy intervention.
Article
We examined types of disabilities in siblings from a large sample of families of adolescents and adults with autism spectrum disorders (ASD) and the impact of another child with a disability on maternal and family well-being. The most frequent disabilities in siblings were attention and hyperactivity (4.6%) and autism spectrum (2.4%) disorders and psychiatric (2.1%) and learning (2.0%) disabilities. Mothers parenting another child with a disability (in addition to the child with ASD) had higher levels of depressive symptoms and anxiety and lower family adaptability and cohesion compared with mothers whose only child with a disability had ASD (matched on child age and family size). Findings are discussed with respect to understanding the needs of such families, including service provision.
Article
Objectives. We used data from the 1996 panel of the Survey of Income and Program Participation to examine the extent to which working-age people with disabilities experience several types of material hardships. Methods. We constructed a series of logistic regression models to assess the importance of disability to material hardship experiences after controlling for income and other sociodemographic characteristics. Results. The findings indicate that disability is an important determinant of material hardship even after controlling for these factors. We also found that a large majority of the low-income respondents reporting a material hardship also reported being work-limited for some period of time. Conclusions. Our findings provide support for policies that account for disability-related expenditures and needs when determining eligibility for means-tested assistance programs, and highlight an important limitation of the official poverty measure—it overstates the relative economic well-being of people with disabilities.
Measures of material hardship: Final report
  • T Ouellette
  • N Burstein
  • D Long
  • E Beecroft
Ouellette, T., Burstein, N., Long, D., & Beecroft, E. (2004). Measures of material hardship: Final report. Washington, DC: Office of the Assistant Secretary for Planning and Evaluation, U.S. Department of Health and Human Services.
Using measures of material hardship to assess well-being
  • S G Beverly
Beverly, S. G. (2000). Using measures of material hardship to assess well-being. Focus, 21, 65-69.
Income poverty and material hardship: How strong is the association? (Working Paper Series #04-17) Ann Arbor: National Poverty Center
  • J Iceland
  • K Bauman
Iceland, J., & Bauman, K. (2004). Income poverty and material hardship: How strong is the association? (Working Paper Series #04-17). Ann Arbor: National Poverty Center, University of Michigan.
Hardships in America: The real story of working families
  • H Boushey
  • C Brocht
  • B Gundersen
  • J Bernstein
Boushey, H., Brocht, C., Gundersen, B., & Bernstein, J. (2001). Hardships in America: The real story of working families. Washington, DC: Economic Policy Institute.
Disability and American families
  • Q Wang
Wang, Q. (2005). Disability and American families: 2000. Washington, DC: US Census Bureau.
American with disabilities: 2012, current population reports DC: US Census Bureau The effects of poverty on children. The Future of Children
  • M W Brault
  • J Brooks-Gunn
  • G J Duncan
Brault, M. W. (2012). American with disabilities: 2012, current population reports. Washington, DC: US Census Bureau. Brooks-Gunn, J., & Duncan, G. J. (1997). The effects of poverty on children. The Future of Children, 7(2), 55–71.