Financial Effects on Families of Children With Special Needs
Financial Effects on Families of Children With Special Needs
The findings on the impact of raising CSHCN are summarized in three broad domains: impact on family out-of-pocket expenditures, impact on family employment, and the role of the medical home in moderating these effects. Within the discussion of the impact on expenses and employment, the articles that analyzed severity of condition and type of condition also will be presented. Many of the researchers looked at issues that cross multiple domains; therefore, an article may be summarized more than once when the results are relevant to that area. This summary will allow readers to review all the literature on that one variable.
Researchers examined the out-of-pocket expenditures and family financial burden of families with CSHCN in 13 different articles. In seven of those articles, researchers investigated the impact of insurance status and type on the out-of-pocket expenditures of families. It was found that insured children had lower out-of-pocket expenditures than did noninsured children (Kuhlthau et al., 2005, Newacheck et al., 2004, Newacheck and Kim, 2005, Van Dyck et al., 2004). Results showed that children covered by public insurance had lower out-of-pocket costs than did children covered by private health insurance (Bumbalo et al., 2005, Busch and Barry, 2007, Davidoff, 2004).
Researchers in two studies specifically analyzed how Medicaid was affecting out-of-pocket expenditures. They found that Medicaid coverage substantially lowered out-of-pocket medical expenses and that Supplemental Security Income payments were high enough to cover these expenses (DeCesaro & Hemmeter, 2009). Parish, Shattuck, and Rose (2009) analyzed the expenses of families living in states with more generous Medicaid and Children's Health Insurance Program eligibility and benefits and found that those families had lower expenses than did families living in states with less generous benefits. Barry and Busch (2007) analyzed whether out-of-pocket expenses were lower in states that had enacted mental health parity laws and found that to be true. Families in parity states also were less likely to report financial problems or a need for additional income (Barry & Busch, 2007). Finally, Shattuck and Parish (2008) compared out-of-pocket expenditures by state median income. It found that families living in wealthier states had a lower financial burden. This data demonstrates a relationship between both public insurance programs and enactment of mental health parity legislation and lower family financial burden.
Two researchers analyzed the concept of perceived financial burden (Lindley and Mark, 2010, Schuster et al., 2009). They found that families with lower incomes perceived burden when out-of-pocket expenses were equal to or greater than $250. The risk of reporting financial burden was higher when parents had reduced or stopped work all together (Lindley & Mark, 2010). Schuster et al. (2009) found that taking a leave from work strained family finances and caused families to use savings, borrow money, go on public assistance, limit spending to basic needs, and put off paying bills. When leave was paid, the risk of financial burden was lowered (Schuster et al., 2009).
Many researchers analyzed how the severity of the child's condition affects financial burden. When conditions were more severe (that is, children were reported to be more affected by their conditions and functional limitations were greater), out-of-pocket medical costs were higher (Bumbalo et al., 2005, Lukemeyer et al., 2000, Nageswaran et al., 2008, Van Dyck et al., 2004, Viner-Brown & Kim, 2005). Effect sizes, based on reported odds ratios (ORs), ranged from 3.2 to 5.8 times, indicating an increased risk of financial strain when conditions are severe (Nageswaran et al., 2008, Van Dyck et al., 2004, Viner-Brown & Kim, 2005).
Researchers also have analyzed type of condition and out-of-pocket costs (Busch and Barry, 2009, Kogan et al., 2008, Liptak et al., 2006). Busch and Barry (2009) found that children with mental health needs had greater out-of-pocket expenses compared with children who had a need for other specialty services. Children with autism spectrum disorders had the greatest financial burden (Busch & Barry, 2009). Researchers also have analyzed children with autism spectrum disorders and found higher out-of-pocket costs than for other diagnoses. The effect sizes, measured by ORs, ranged from 1.88 to 2.4 times higher costs (Busch and Barry, 2009, Kogan et al., 2008, Liptak et al., 2006).
Most of the researchers who analyzed the impact on parental employment investigated the severity and type of condition as it affects parent's work. Only two studies solely analyzed the impact on parental employment of having CSHCN (without analyzing severity or type of condition). They found that full-time employment was less likely among parents of disabled and special needs children (Heck and Macuk, 2000, Porterfield, 2002).
This review includes six studies in which researchers analyzed the type of condition as it affects parental employment. Researchers in two studies examined the 2001 and then the 2005-2006 NSCSHCN dataset. They focused on children with a need for mental health services (Busch and Barry, 2007, Busch and Barry, 2009). These researchers found that families were more likely to cut work hours or to stop work all together when compared with children without a need for mental health services or when compared with children with a need for other specialty services. Kogan et al. (2008) found that children with autism have the greatest employment impact when compared with children with other emotional, developmental, or behavioral problems. Effect sizes, measured by ORs, ranged from 1.68 to 3.29 times more likely to reduce or stop employment because of the child's condition.
Researchers in two studies analyzed families with children with developmental disabilities. Parents of children with developmental disabilities were found to have lower rates of employment compared with parents with a non-developmentally disabled child (Parish et al., 2004, Seltzer et al., 2001). Another set of researchers analyzed mothers of children with asthma and found similar results—that they were less likely to be employed both full time and part time than were mothers of children without asthma (Baydar, Joesch, Kieckhefer, Kim, & Greek, 2007).
Eight studies analyzed the severity of the child's condition and its impact on employment. All of these studies found that the more severe the condition, the more likely it was that parents would reduce or stop work altogether (Kuhlthau and Perrin, 2001, Leiter et al., 2004, Looman et al., 2009, Loprest and Davidoff, 2004, Nageswaran et al., 2008, Okumura et al., 2009, Van Dyck et al., 2004, Viner-Brown & Kim, 2005). Severity was most often measured by functional or activity limitations. Effect sizes, measured by ORs, ranged from 1.3 to 7.9 times more likely to reduce or stop work.
Only one other study that analyzed the employment of family members of CSHCN was found during this literature review. Yu and Singh (2009) found that households where English was not a primary language were almost twice as likely (OR = 1.87) to stop employment as result of child's condition than were households where English was the primary language.
All the articles found to have included examinations on the concept of the medical home utilized the NSCSCHN and thus used the same operationalized definition that meets the AAP standards. The variable has four components, including whether (a) the child has a usual source of care and/or personal provider; (b) the care provided is "family centered;" (c) care coordination services are received; and (d) the family has problems getting all the referrals they need (Bethell, Read, & Brockwood, 2004).
The concept of medical home and its impact on family finances and employment were summarized in six articles. Kuhlthau et al. (2005) and Viner-Brown & Kim (2005) examined the impact on out-of-pocket expenses. Both study results revealed that receiving care in a medical home reduced the impact on finances. Kuhlthau et al. (2005) found that the risk of financial problems was reduced, with an effect size of .68 OR. Viner-Brown & Kim (2005) found that the likelihood of financial problems was greater (OR = 2.6) for families that did not receive care in a medical home.
Two articles included findings related to impact on employment only (DeRigne & Porterfield, 2010, Okumura et al., 2009). DeRigne & Porterfield (2010) found that receiving care in a medical home reduced the risk of parents choosing to stop work by 64% and choosing to reduce hours by 51%. The researchers also found that the key element of the medical home variable was having someone who assists in care coordination (DeRigne & Porterfield, 2010). In another study with similar results, researchers found that parents who reported receiving care coordination had a lower risk of out-of-pocket expenditures (OR = .57) and of reducing employment (OR = .47) (Turchi et al., 2009). Okumura et al. (2009) found that when children received care in a medical home, the odds of work loss were reduced by 50%.
One final article was found during this literature review that included results of the effect of the medical home on both expenses and employment. Looman et al. (2009) found that an element of the medical home variable (having a health care provider who communicated well with other service providers and made families feel like partners in child's care) were less likely to report financial problems (OR = .40) or employment problems (OR = .51).
Results
The findings on the impact of raising CSHCN are summarized in three broad domains: impact on family out-of-pocket expenditures, impact on family employment, and the role of the medical home in moderating these effects. Within the discussion of the impact on expenses and employment, the articles that analyzed severity of condition and type of condition also will be presented. Many of the researchers looked at issues that cross multiple domains; therefore, an article may be summarized more than once when the results are relevant to that area. This summary will allow readers to review all the literature on that one variable.
Out-of-Pocket Expenditures
Researchers examined the out-of-pocket expenditures and family financial burden of families with CSHCN in 13 different articles. In seven of those articles, researchers investigated the impact of insurance status and type on the out-of-pocket expenditures of families. It was found that insured children had lower out-of-pocket expenditures than did noninsured children (Kuhlthau et al., 2005, Newacheck et al., 2004, Newacheck and Kim, 2005, Van Dyck et al., 2004). Results showed that children covered by public insurance had lower out-of-pocket costs than did children covered by private health insurance (Bumbalo et al., 2005, Busch and Barry, 2007, Davidoff, 2004).
Researchers in two studies specifically analyzed how Medicaid was affecting out-of-pocket expenditures. They found that Medicaid coverage substantially lowered out-of-pocket medical expenses and that Supplemental Security Income payments were high enough to cover these expenses (DeCesaro & Hemmeter, 2009). Parish, Shattuck, and Rose (2009) analyzed the expenses of families living in states with more generous Medicaid and Children's Health Insurance Program eligibility and benefits and found that those families had lower expenses than did families living in states with less generous benefits. Barry and Busch (2007) analyzed whether out-of-pocket expenses were lower in states that had enacted mental health parity laws and found that to be true. Families in parity states also were less likely to report financial problems or a need for additional income (Barry & Busch, 2007). Finally, Shattuck and Parish (2008) compared out-of-pocket expenditures by state median income. It found that families living in wealthier states had a lower financial burden. This data demonstrates a relationship between both public insurance programs and enactment of mental health parity legislation and lower family financial burden.
Two researchers analyzed the concept of perceived financial burden (Lindley and Mark, 2010, Schuster et al., 2009). They found that families with lower incomes perceived burden when out-of-pocket expenses were equal to or greater than $250. The risk of reporting financial burden was higher when parents had reduced or stopped work all together (Lindley & Mark, 2010). Schuster et al. (2009) found that taking a leave from work strained family finances and caused families to use savings, borrow money, go on public assistance, limit spending to basic needs, and put off paying bills. When leave was paid, the risk of financial burden was lowered (Schuster et al., 2009).
Many researchers analyzed how the severity of the child's condition affects financial burden. When conditions were more severe (that is, children were reported to be more affected by their conditions and functional limitations were greater), out-of-pocket medical costs were higher (Bumbalo et al., 2005, Lukemeyer et al., 2000, Nageswaran et al., 2008, Van Dyck et al., 2004, Viner-Brown & Kim, 2005). Effect sizes, based on reported odds ratios (ORs), ranged from 3.2 to 5.8 times, indicating an increased risk of financial strain when conditions are severe (Nageswaran et al., 2008, Van Dyck et al., 2004, Viner-Brown & Kim, 2005).
Researchers also have analyzed type of condition and out-of-pocket costs (Busch and Barry, 2009, Kogan et al., 2008, Liptak et al., 2006). Busch and Barry (2009) found that children with mental health needs had greater out-of-pocket expenses compared with children who had a need for other specialty services. Children with autism spectrum disorders had the greatest financial burden (Busch & Barry, 2009). Researchers also have analyzed children with autism spectrum disorders and found higher out-of-pocket costs than for other diagnoses. The effect sizes, measured by ORs, ranged from 1.88 to 2.4 times higher costs (Busch and Barry, 2009, Kogan et al., 2008, Liptak et al., 2006).
Impact on Employment
Most of the researchers who analyzed the impact on parental employment investigated the severity and type of condition as it affects parent's work. Only two studies solely analyzed the impact on parental employment of having CSHCN (without analyzing severity or type of condition). They found that full-time employment was less likely among parents of disabled and special needs children (Heck and Macuk, 2000, Porterfield, 2002).
This review includes six studies in which researchers analyzed the type of condition as it affects parental employment. Researchers in two studies examined the 2001 and then the 2005-2006 NSCSHCN dataset. They focused on children with a need for mental health services (Busch and Barry, 2007, Busch and Barry, 2009). These researchers found that families were more likely to cut work hours or to stop work all together when compared with children without a need for mental health services or when compared with children with a need for other specialty services. Kogan et al. (2008) found that children with autism have the greatest employment impact when compared with children with other emotional, developmental, or behavioral problems. Effect sizes, measured by ORs, ranged from 1.68 to 3.29 times more likely to reduce or stop employment because of the child's condition.
Researchers in two studies analyzed families with children with developmental disabilities. Parents of children with developmental disabilities were found to have lower rates of employment compared with parents with a non-developmentally disabled child (Parish et al., 2004, Seltzer et al., 2001). Another set of researchers analyzed mothers of children with asthma and found similar results—that they were less likely to be employed both full time and part time than were mothers of children without asthma (Baydar, Joesch, Kieckhefer, Kim, & Greek, 2007).
Eight studies analyzed the severity of the child's condition and its impact on employment. All of these studies found that the more severe the condition, the more likely it was that parents would reduce or stop work altogether (Kuhlthau and Perrin, 2001, Leiter et al., 2004, Looman et al., 2009, Loprest and Davidoff, 2004, Nageswaran et al., 2008, Okumura et al., 2009, Van Dyck et al., 2004, Viner-Brown & Kim, 2005). Severity was most often measured by functional or activity limitations. Effect sizes, measured by ORs, ranged from 1.3 to 7.9 times more likely to reduce or stop work.
Only one other study that analyzed the employment of family members of CSHCN was found during this literature review. Yu and Singh (2009) found that households where English was not a primary language were almost twice as likely (OR = 1.87) to stop employment as result of child's condition than were households where English was the primary language.
Role of the Medical Home
All the articles found to have included examinations on the concept of the medical home utilized the NSCSCHN and thus used the same operationalized definition that meets the AAP standards. The variable has four components, including whether (a) the child has a usual source of care and/or personal provider; (b) the care provided is "family centered;" (c) care coordination services are received; and (d) the family has problems getting all the referrals they need (Bethell, Read, & Brockwood, 2004).
The concept of medical home and its impact on family finances and employment were summarized in six articles. Kuhlthau et al. (2005) and Viner-Brown & Kim (2005) examined the impact on out-of-pocket expenses. Both study results revealed that receiving care in a medical home reduced the impact on finances. Kuhlthau et al. (2005) found that the risk of financial problems was reduced, with an effect size of .68 OR. Viner-Brown & Kim (2005) found that the likelihood of financial problems was greater (OR = 2.6) for families that did not receive care in a medical home.
Two articles included findings related to impact on employment only (DeRigne & Porterfield, 2010, Okumura et al., 2009). DeRigne & Porterfield (2010) found that receiving care in a medical home reduced the risk of parents choosing to stop work by 64% and choosing to reduce hours by 51%. The researchers also found that the key element of the medical home variable was having someone who assists in care coordination (DeRigne & Porterfield, 2010). In another study with similar results, researchers found that parents who reported receiving care coordination had a lower risk of out-of-pocket expenditures (OR = .57) and of reducing employment (OR = .47) (Turchi et al., 2009). Okumura et al. (2009) found that when children received care in a medical home, the odds of work loss were reduced by 50%.
One final article was found during this literature review that included results of the effect of the medical home on both expenses and employment. Looman et al. (2009) found that an element of the medical home variable (having a health care provider who communicated well with other service providers and made families feel like partners in child's care) were less likely to report financial problems (OR = .40) or employment problems (OR = .51).
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