Week 11 Discussion

Investigation of raising burden of children with autism, physical disability and mental disability in China

Nina Xiong *, Li Yang, Yang Yu, Jiaxun Hou, Jia Li, Yuanyuan Li, Hairong Liu, Ying Zhang, Zhengang Jiao

Beijing Disabled Persons’ Rehabilitation Service and Guidance Center, Beijing 100070, China

1. The investigation of raising burden of children with autism, physical disability and mental disability in China

The economic burden of raising children with disabilities is a problem in many countries. Study in South India (Kandamuthan & Kandamuthan, 2004) indicated that, the mean expenditure of the families with a severely disabled child was $254 per year, which is significantly higher than the corresponding expenditure of $181 per year of families with normal child. Of the disabled children, 80% were not getting any social security payments and 90% had no special concessions for medical and other educational purposes. Of the mothers of the disabled children 21% were unemployed as against 12% in the case of normal children. Parents of disabled children demanded an average additional amount of $203 per year as social security payments from the Government to meet the essential necessities of their disabled children. There are extra costs for disabled children for travel, domestic help, medical care, and health care expenditures (hospital care, physician services, dentistry, drugs and others) for disabled individuals; financial impact of disablement in a child on the family is significant; medical expenditure was a significant variable that differentiated the disabled and normal child. Findings (Honeycutt et al.,

Research in Developmental Disabilities 32 (2011) 306–311

A R T I C L E I N F O

Article history:

Received 21 September 2010

Received in revised form 29 September 2010

Accepted 7 October 2010

Keywords:

Autism

Physical disability

Mental disability

Raising burden

A B S T R A C T

The family economic burden of raising autistic children, physical disabled children and

mental disabled children were evaluated in China. 227 parents of children with autism,

children with physical disability, children with mental disability and normal children were

interviewed for children’s costs, family income and economic assistance, etc. The medical

cost and caring cost of disabled children were significantly more than those of normal

children, and the education cost, clothes cost and amusement cost of disabled children

were significantly less than those of normal children. Family income was only predicted by

parents’ education level. Families of disabled children received more economic assistance

than families of normal children except families of autistic children. More children the

family had, less economic assistance the family acquired. Compared with normal children,

the raising burden of children with disabilities were as follows: children with autism

(19582.4 RMB per year), children with physical disability (16410.1 RMB per year), children

with mental disability (6391.0 RMB per year). Families of autistic children, physical

disabled children and mental disabled children have heavier raising burden than families

of normal children, they need more help from many aspects.

� 2010 Elsevier Ltd. All rights reserved.

* Corresponding author. Tel.: +86 10 63781942 8071.

E-mail addresses: [email protected] (N. Xiong), [email protected] (L. Yang), [email protected] (Y. Yu), [email protected] (J. Hou),

[email protected] (J. Li), [email protected] (Y. Li), [email protected] (H. Liu), [email protected] (Y. Zhang), [email protected]

(Z. Jiao).

Contents lists available at ScienceDirect

Research in Developmental Disabilities

0891-4222/$ – see front matter � 2010 Elsevier Ltd. All rights reserved. doi:10.1016/j.ridd.2010.10.003

2003) suggest that lifetime costs, in excess of costs for individuals without DDs, are approximately $870,000 per person for mental retardation and $800,000 per person for cerebral palsy (in 2000 dollars). In America, legislation requiring private insurance companies to pay for autism-related services is still on the working (Bouder, Spielman, & Mandell, 2009). Study in China also reported that families of autistic children had economic problems, they needed economic assistance, doctors for special children and institutions for rehabilitating or educating special children (Huang, Zhang, & Xing, 2009).

The aim of this study was to investigate children’s costs, family income and economic assistance, etc. of autistic children, physical disabled children, mental disabled children and normal children, evaluate family raising burden for the three kinds of disabled children, provide scientific evidence for policy making or revising.

2. Methods

2.1. Participants

Two-hundred-fifty children including autistic children, physical disabled children, mental disabled children and normal children and their parents were recruited from three rehabilitation institution of Beijing, finally 227 children and their parents participated in this study.

Of the 227 children, 139 (61.2%) were boys, 88 (38.8%) were girls. Age range was 1–10 years, 70 (30.8%) were 0–3 years old, 131 (57.7%) were 4–6 years old, 26 (11.5%) were 7–10 years old. 82 (36.1%) were physical disabled children, 33 (14.5%) were mental disabled children, 61 (26.9%) were autistic children, and 51 (22.5%) were normal children. Tables 1 and 2 summarized some of the demographic detail.

2.2. Procedure

All investigations were approved by ethics committee of Beijing Disabled Persons Federation. We interviewed parents with a questionnaire, including general information, education cost of children, medical cost of children, caring cost of children, food cost of children, clothes cost of children, amusement cost of children, toy or education tool cost of children, family income, family economic assistance, medical assistance, etc.

2.3. Statistical analysis

A one-way ANOVA was used to compare cost, family income, economic and medical assistance among different children groups. Binary logistic regression was performed using a enter method to find the predictors of costs, family income, economic and medical assistance of children. SPSS 12.0 was employed for all the statistical analysis.

Table 1

The gender and age distribution of children.

Autism Physical disability Mental disability Normal

Num % Num % Num % Num %

Gender

Boys 51 83.6 49 59.8 16 48.5 23 45.1

Girls 10 16.4 33 40.2 17 51.5 28 54.9

Total 61 100.0 82 100.0 33 100.0 51 100.0

Age

0–3 years 18 29.5 25 30.5 13 39.4 14 27.5

4–6 years 28 45.9 49 59.8 19 57.6 35 68.6

7–10 years 15 24.6 8 9.8 1 3.0 2 3.9

Total 61 100.0 82 100.0 33 100.0 51 100.0

Table 2

The disability degree distribution of children with disabilities.

Degree Autism Physical disability Mental disability

Num % Num % Num %

Profound 4 6.6 2 2.4 0 0.0

Severe 7 11.5 27 32.9 8 24.2

Middle 28 45.9 35 42.7 12 36.4

Mild 22 36.1 18 22.0 13 39.4

Total 61 100.0 82 100.0 33 100.0

N. Xiong et al. / Research in Developmental Disabilities 32 (2011) 306–311 307

3. Results

3.1. General information

Fathers education level: college or above 103 (45.4%), high middle school 86 (37.9%), low middle school or below 38 (16.7%); mothers education level: college or above 98 (43.2%), high middle school 87 (38.3%), low middle school or below 42 (18.5%). Fathers employment condition: employment 203 (89.4%), unemployment 24 (10.6%); mothers employment condition: employment 143 (63.0%), unemployment 84 (37.0%). Among the families of 227 children, 195 (85.9%) have one children, 30 (13.2%) have two children, 2 (0.9%) have three children. Tables 3–5 summarizes the detail.

3.2. The situation of children’s cost, family income and receiving economic or medical assistance

The rehabilitation cost of autistic children was significantly more than that of mental disabled children. The education cost of normal children and autistic children were significantly more than that of physical disabled children and mental disabled children. The medical cost of physical disabled children was significantly more than that of normal children and autistic children. The caring cost of mental disabled children and autistic children were significantly more than that of normal children. The family economic assistance of physical disabled children and mental disabled children were significantly more than that of normal children; and the family economic assistance of physical disabled children was significantly more than that of autistic children (Table 6).

3.3. The predictors of children’s cost, family income and receiving economic or medical assistance

We employed binary logistic regression to find the predictors of children’s rehabilitation cost, education cost, medical cost, caring cost, food cost, clothes cost, amusement cost, toy or education tools cost, family income, economic assistance and medical assistance. Children’s rehabilitation cost (0 –�average, 1 –>average), education cost, medical cost, caring cost, food cost, clothes cost, amusement cost, toy or education tools cost, family income, economic assistance and medical assistance entered as dependent variables, children’s age (0–10 years), children’s gender (1 – male, 2 – female), children’s diagnosis (1 – normal, 2 – physical disability, 3 – mental disability, 4 – autism), children’s disability degree (1 – profound, 2 – severe, 3 – middle, 4 – mild) (only used when children’s rehabilitation cost was dependent variable), father’s education level (1 – college or above, 2 – high middle school, 3 – low middle school or below), mother’s education level, father’s employment condition

Table 3

Parents’ education level of children.

Autism Physical disability Mental disability Normal

Num % Num % Num % Num %

Fathers’ education level

College or above 29 63 25 33.8 15 46.9 17 34.7

High middle school 13 28.3 32 43.2 11 34.4 21 42.9

Low middle school or below 4 8.7 17 23.0 6 18.8 11 22.4

Total 46 100.0 74 100.0 32 100.0 49 100.0

Mothers’ education level

College or above 26 56.6 28 37.9 16 50 11 22.4

High middle school 15 32.6 29 39.2 9 28.1 26 53.1

Low middle school or below 5 10.9 17 23.0 7 21.9 12 24.5

Total 46 100.0 74 100.0 32 100.0 49 100.0

Table 4

Parents’ employment condition of children.

Autism Physical disability Mental disability Normal

Num % Num % Num % Num %

Fathers’ employment condition

Employment 43 93.5 62 83.8 28 87.5 46 93.9

Unemployment 3 6.5 12 16.2 4 12.5 3 6.1

Total 46 100.0 74 100.0 32 100.0 49 100.0

Mothers’ employment condition

Employment 31 67.4 31 41.9 21 65.6 40 81.6

Unemployment 15 32.6 43 58.1 11 34.4 9 18.4

Total 46 100.0 74 100.0 32 100.0 49 100.0

N. Xiong et al. / Research in Developmental Disabilities 32 (2011) 306–311308

(1 – employment, 2 – unemployment), mother’s employment condition, number of children per family (1–3) entered as independent variables.

When children’s rehabilitation cost (excluded normal children), children’s food cost, medical assistance entered as dependent variable respectively, in these model, there were no significant predictor.

When children’s education cost entered as a dependent variable, in this model, children’s age (P = 0.002, OR = 1.340, 95%CI: 1.113–1.614) and diagnosis (physical disab/normal: P = 0.001, OR = 0.213, 95%CI: 0.084–0.537; mental disability/ normal: P = 0.037, OR = 0.325, 95%CI: 0.113–0.934; autism/normal: P = 0.005, OR = 0.254, 95%CI: 0.098–0.657) were the predictors. When children’s medical cost entered as a dependent variable, children’s diagnosis (physical disab/normal: P = 0.046, OR = 2.698, 95%CI: 1.017–7.158; autism/normal: P = 0.021, OR = 3.247, 95%CI: 1.199–8.797) and mother’s employment condition (P = 0.041, OR = 0.470, 95%CI: 0.228–0.968) were the predictors. When children’s caring cost entered as a dependent variable, children’s diagnosis (physical disab/normal: P = 0.006, OR = 6.731, 95%CI: 1.723–26.294; mental disab/normal: P = 0.010, OR = 6.808, 95%CI: 1.568–29.572; autism/normal: P = 0.013, OR = 5.636, 95%CI: 1.437–22.106) and mother’s employment condition (P = 0.002, OR = 0.238, 95%CI: 0.094–0.603) were the predictors. When children’s clothes cost entered as a dependent variable, children’s gender (P = 0.016, OR = 2.228, 95%CI: 1.163–4.269), children’s diagnosis (autism/normal: P = 0.033, OR = 0.354, 95%CI: 0.137–0.917), mother’s education level (P = 0.029, OR = 0.474, 95%CI: 0.242– 0.928), father’s employment condition (P = 0.030, OR = 3.075, 95%CI: 1.118–8.457) were the predictors. When children’s amusement cost entered as a dependent variable, children’s diagnosis (mental disability/normal: P = 0.046, OR = 0.270, 95%CI: 0.075–0.979) and mother’s education level (P = 0.021, OR = 0.384, 95%CI: 0.170–0.867) were predictors. When children’s toy or education tools cost entered as a dependent variable, mother’s education level (P = 0.011, OR = 0.446, 95%CI: 0.241–0.828) was the predictor. When family income entered as a dependent variable, father’s and mother’s education level (P = 0.025, OR = 0.450, 95%CI: 0.224–0.904; P = 0.009, OR = 0.387, 95%CI: 0.190–0.790) were predictors. When economic assistance entered as a dependent variable, children’s diagnosis (physical disab/normal: P = 0.000, OR = 31.336, 95%CI: 6.511–150.812; mental disab/normal: P = 0.000, OR = 23.443, 95%CI: 4.486–122.498) and number of children per family (P = 0.017, OR = 0.304, 95%CI: 0.114–0.809) were predictors (Tables 7–9).

3.4. The raising burden of children with disabilities

Formulation: the raising burden of children with disability = (the income per person per year of family of normal children� the income per person per year of family of disabled children) + (the cost per person per year of disabled children� the cost per person per year of normal children)� (the economic assistance per family per year of disabled children� the economic assistance per family per year of normal children).

The raising burden of children with autism = (19096.0784� 19706.8306) + (41081.9672� 20398.6275)� (654.9180� 164.7059) = 19582.4 RMB.

Table 6

Children’s cost, family income and receiving economic or medical assistance (RMB).

Family income and payment Physical disability Mental disability Autism Normal children ANOVA (F) P

Rehabilitation cost per person per year 13470.73 8595.45a 19196.72a – 4.365 0.014 Education cost per person per year 3363.41a,b 2533.33a,b 6428.36b 7530.98a 4.411 0.005 Medical cost per person per year 7311.46a,b 4871.21 3767.38b 2241.18a 2.803 0.041 Caring cost per person per year 2575.61 4075.76a 3560.66b 588.24a,b 3.268 0.022 Clothe cost per person per year 1453.12 1251.52 1019.92 1924.12 2.263 0.082

Food cost per person per year 5413.66 6134.85 5209.84 4675.49 0.702 0.552

Amusement cost per person per year 982.20 629.39 1215.16 1908.82 2.503 0.060

Toy and education tool cost per person per year 1080.51 821.82 598.69 1185.10 1.972 0.119

Family income per person per year 15159.35 19126.87 19706.83 19096.08 1.239 0.296

Economic assistance per family per year 3804.39a,b 2351.52a 654.92b 164.71a 10.022 0.000 Medical assistance per person per year 957.93 633.33 207.87 500.00 0.531 0.661

The alphabets ‘a and b’ denotes LSD test, P< 0.05.

Table 5

The number of children per family.

Num of children Autism Physical disability Mental disability Normal

Num % Num % Num % Num %

1 42 91.3 60 81.1 27 84.4 43 87.8

2 4 8.7 12 16.2 5 15.6 6 12.2

3 0 0.0 2 2.7 0 0.0 0 0.0

Total 46 100.0 74 100.0 32 100.0 49 100.0

N. Xiong et al. / Research in Developmental Disabilities 32 (2011) 306–311 309

The raising burden of children with physical disability = (19096.0784� 15159.3496) + (36511.6829� 20398.6275)� (3804.3902� 164.7059) = 16410.1 RMB. The raising burden of children with mental disability = (19096.0784� 19126.8687) + (29007.2727� 20398.6275) � (2351.5152� 164.7059) = 6391.0 RMB.

4. Discussion

This investigation indicated that the medical cost and caring cost of disabled children were significantly more than those of normal children, and the education cost, clothes cost and amusement cost of disabled children were significantly less than

Table 7

Binary regression predicting education cost, medical cost and caring cost of children.

Variables Education cost Medical cost Caring cost

OR 95%CI P OR 95%CI P OR 95%CI P

Age 1.340 1.113–1.614 .002 .933 .784–1.109 .430 .980 .810–1.186 .834 Gender 1.471 .745–2.906 .266 .967 .498–1.875 .920 .847 .386–1.856 .678

Normal .006 .123 .041 Physical disab .213 .084–.537 .001 2.698 1.017–7.158 .046 6.731 1.723–26.294 .006 Mental disab .325 .113–.934 .037 2.598 .864–7.816 .089 6.808 1.568–29.572 .010 Autism .254 .098–.657 .005 3.247 1.199–8.797 .021 5.636 1.437–22.106 .013 Father edu .912 .473–1.757 .783 1.021 .537–1.940 .949 .799 .351–1.818 .593

Mother edu .503 .252–1.001 .050 .898 .472–1.707 .743 .611 .267–1.398 .243

Father job .952 .303–2.988 .932 1.062 .373–3.026 .910 .521 .106–2.559 .422

Mother job 1.033 .483–2.212 .933 .470 .228–.968 .041 .238 .094–.603 .002 Num of children .589 .203–1.711 .330 .452 .164–1.248 .126 .818 .274–2.442 .719

Constant 1.159 .904 1.659 .664 3.627 .386

The bold donates P< 0.05.

Table 8

Binary regression predicting clothes cost, amusement cost and toy or education tools cost of children.

Variables Clothes cost Amusement cost Toy or edu tools cost

OR 95%CI P OR 95%CI P OR 95%CI P

Age 1.058 .885–1.264 .536 1.059 .879–1.276 .547 .990 .840–1.168 .909

Gender 2.228 1.163–4.269 .016 1.068 .513–2.225 .861 1.109 .605–2.033 .738 Normal .116 .167 .272

Physical disab .707 .293–1.707 .441 .513 .190–1.384 .188 .938 .410–2.144 .878

Mental disab .415 .145–1.192 .102 .270 .075–.979 .046 .701 .265–1.853 .474 Autism .354 .137–.917 .033 .385 .137–1.086 .071 .470 .194–1.139 .095 Father edu .767 .401–1.466 .423 .537 .244–1.181 .122 1.022 .562–1.858 .943

Mother edu .474 .242–.928 .029 .384 .170–.867 .021 .446 .241–.828 .011 Father job 3.075 1.118–8.457 .030 1.170 .335–4.089 .806 1.588 .614–4.104 .340 Mother job .549 .257–1.173 .122 1.074 .471–2.449 .865 .600 .305–1.177 .137

Num of children 1.205 .502–2.892 .676 1.508 .529–4.299 .442 .850 .372–1.939 .699

Constant .524 .553 2.289 .513 4.195 .166

The bold donates P< 0.05.

Table 9

Binary regression predicting family income, receiving economic assistance of children.

Variables Family income Economic assistance

OR 95%CI P OR 95%CI P

Age 1.101 .920–1.319 .294 1.075 .873–1.324 .493

Gender .888 .441–1.789 .739 1.031 .493–2.159 .935

Normal .191 .000 Physical disab .584 .223–1.533 .275 31.336 6.511–150.812 .000 Mental disab 1.312 .437–3.944 .628 23.443 4.486–122.498 .000 Autism .452 .167–1.220 .117 2.157 .346–13.448 .410

Father edu .450 .224–.904 .025 1.663 .817–3.386 .161 Mother edu .387 .190–.790 .009 1.046 .514–2.128 .901 Father job .426 .110–1.646 .216 2.693 .910–7.966 .073

Mother job .623 .291–1.334 .223 1.205 .547–2.656 .643

Num of children .532 .172–1.643 .272 .304 .114–.809 .017 Constant 93.443 .001 .009 .001

The bold donates P< 0.05.

N. Xiong et al. / Research in Developmental Disabilities 32 (2011) 306–311310

those of normal children. So disabled children enjoyed less than normal children, usually they were looked after or being seen by doctors while normal children were studying or playing. Apart from that, the education cost, medical cost, caring cost, clothes cost, amusement cost, toy or education tools cost also can be predicted by children’s age, parents’ employment condition, and mothers’ education level. We found the family income of children could not be predicted by children’s diagnosis or disability degree, which only can be predicted by parents’ education level. Among the three kinds of disabled children, physical disabled children and mental disabled children have more family economic assistance than normal children. The study also indicated that more children the family had, less economic assistance the family got, probably this was related to some national policy of family planning.

Compare with normal children, the order of raising burden per year of three kinds of disabled children were: children with autism, children with physical disability, and children with mental disability. So parents of children with autism had the heaviest financial burden. This finding was similar to previous studies which showed that the utilization and costs of health care are substantially higher for children with autism spectrum disorders compared with children without autism spectrum disorders (Croen, Najjar, Ray, Lotspeich, & Bernal, 2006), total expenditures per treated patient were higher for patients with ASDs than for individuals with other mental disorders (Leslie & Martin, 2007), children with ASD have a substantial burden of medical illness (Kogan et al., 2008). The appearance of autistic children usually have no difference from normal children, many of them have normal IQ, their parents usually did not want to diagnose their children with disability or get the disability certification, this would have hindered them to acquire economic assistance (in Beijing, children with disability can acquire economic assistance only after they were evaluated and get the disability certification), therefore the raising burden of autistic children increased.

All in all, parents of these disabled children had heavier raising burden than parents of normal children, though they already endured many psychological stress (Abbeduto et al., 2004; Sivberg, 2002; Xiong et al., 2009; Yang, Jing, & Zhang, 2007; Yu & Xiao, 2009). For now, Beijing have established rehabilitation security policy for disabled children and adolescent, realized rehabilitation security for every disabled children and adolescent, and free rehabilitation for poor disabled children, which were very helpful for disabled children and their families. In fact, disabled children need not only rehabilitation help, but also help of education, medication, even amusement. This study only represented children with physical disability, mental disability and autism who were receiving rehabilitation in rehabilitation institution of Beijing.

References

Abbeduto, L., Seltzer, M. M., Shattuck, P., Krauss, M. W., Orsmond, G., & Murphy, M. M. (2004). Psychological well-being and coping in mothers of youths with autism, Down syndrome, or fragile X syndrome. American Journal on Mental Retardation, 109, 237–254.

Bouder, J. N., Spielman, S., & Mandell, D. S. (2009). Brief report: Quantifying the impact of autism coverage on private insurance premiums. Journal of Autism and Developmental Disorders, 39, 953–957.

Croen, L. A., Najjar, D. V., Ray, G. T., Lotspeich, L., & Bernal, P. (2006). A comparison of health care utilization and costs of children with and without autism spectrum disorders in a large group-model health plan. Pediatrics, 118, e1203–e1211.

Honeycutt, A. A., Grosse, S. D., Dunlap, L. J., Schendel, D. E., Chen, H., Brann, E., et al. (2003). Economic costs of mental retardation, cerebral palsy, hearing loss, and vision impairment. Research in Social Science and Disability, 3, 207–228.

Huang, X.-Y., Zhang, R., & Xing, Y.-Q. (2009). An investigation on needs of families and developmental support of 71 autistic children. Chinese Journal of Special Education, 11, 43–47 (in Chinese).

Kandamuthan, M., & Kandamuthan, S. (2004). The economic burden of disabled children on families in Kerala in South India. Centre for Development Studies. Available at SSRN: http://ssrn.com/abstract=995114 (Discussion Paper No. 91).

Kogan, M. D., Strickland, B. B., Blumberg, S. J., Singh, G. K., Perrin, J. M., & Van Dyck, P. C. (2008). A national profile of the health care experiences and family impact of autism spectrum disorder among children in the United States, 2005–2006. Pediatrics, 122, e1149–e1158.

Leslie, D. L., & Martin, A. (2007). Health care expenditures associated with autism spectrum disorders. Archives of Pediatrics & Adolescent Medicine, 161, 350–355. Sivberg, B. (2002). Family system and coping behaviors: a comparison between parents of children with autistic spectrum disorders and parents with non-autistic

children. Autism, 6, 397–409. Xiong, N., Ji, C., Bo, H., Wang, X., Shi, J., Chen, Y., et al. (2009). The study of anxiety, depression, coping status and family environment of mothers of children with

autism. Chinese Mental Health Journal, 23, 830–831 (in Chinese). Yang, Q.-Y., Jing, J., & Zhang, J.-M. (2007). Relationship between family environmental and psychological status of mothers of children with mental retardation.

Chinese Journal of Rehabilitation Theory and Practice, 13, 675–677 (in Chinese). Yu, W.-Y., & Xiao, N. (2009). Study on correlation of life quality anxiety and depression in parents of cerebral palsy children. Journal of Chongqing Medical University,

34, 1260–1262 (in Chinese).

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