How To Treat An Autistic Child With Severe Developmental Disability

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1 1 Impact of Type and Adequacy on Child, Family Impact, and System of Care Core Outcomes among Children with Special Care Needs and Autism Spectrum Disorder Data from the National Survey of Children with Special Care Needs (NS CSHCN) were used to create these three tables. Unless otherwise indicated, data represent U.S. CSHCN with current autism spectrum disorder (ASD) age 2 17 years. insurance adequacy is defined based on whether the child usually or always (1) has current health insurance benefits that meet his/her needs; (2) has uncovered costs that are reasonable; AND (3) has health insurance that enables him/her to see needed providers. Table 1. Impact of Type on Child, Family Impact and Core Outcomes among CSHCN with ASD Prevalence of Type, Child and Functional Status Measures Indicator 1: CSHCN whose health conditions consistently affect their daily activities Indicator 2: CSHCN with 11 or more school absences due to illness, age 5 17 years CSHCN experience four or more functional difficulties (either a little or a lot from list of 14) Indicator 12: CSHCN whose families paid $1000 or more out of pocket in medical expenses in past 12 months Indicator 13: CSHCN whose health conditions cause financial problems for the family Indicator 14: CSHCN whose families spend 11 or more hours per week providing and/or coordinating child's health care Indicator 15: CSHCN whose conditions cause family members to cut back or stop working Family member(s) avoided changing jobs in order to maintain health insurance for child Only Only Public and Private Wtd % (95% C.I.) 2 ( ) ( ) ( ) Wtd Pop. Est 3 372, , ,687 Wtd % (95% C.I.) 2 ( ) ( ) ( ) Wtd Pop. Est 3 233, , ,250 Wtd % (95% C.I.) 2 ( ) ( ) ( ) Wtd Pop. Est 3 43,986 54,467 19,711 Wtd % (95% C.I.) 2 ( ) ( ) ( ) Wtd Pop. Est 3 330, , ,575 Wtd % (95% C.I.) 2 ( ) ( ) ( ) Wtd Pop. Est 3 181,571 40,713 34,181 Wtd % (95% C.I.) 2 ( ) ( ) ( ) Wtd Pop. Est 3 161, ,559 66,293 Wtd % (95% C.I.) 2 ( ) ( ) ( ) Wtd Pop. Est 3 71, ,101 49,058 Wtd % (95% C.I.) 2 ( ) ( ) ( ) Wtd Pop. Est 3 187, ,318 86,445 Wtd % (95% C.I.) 2 ( ) ( ) ( ) Wtd Pop. Est 3 147,087 46,987 48,786 Suggested Citation: Child and Adolescent Measurement Initiative (2012). "Impact of Adequacy on Child, Family Impact and Core Outcomes

2 2 Maternal and Child Bureau System of Care for CSHCN Measures Outcome #1: CSHCN whose families are partners in shared decision making for child's optimal health Outcome #2: CSHCN who receive coordinated, ongoing, comprehensive care within a medical home Outcome #3: CSHCN who have adequate and consistent health insurance coverage Outcome #4: CSHCN who are screened early and continuously for special health care needs Outcome #5: CSHCN who can easily access community based services Outcome #6: CSHCN youth receive services needed for transition to adulthood, age years only Only Only Public and Private Wtd % (95% C.I.) 2 ( ) ( ) ( ) Wtd Pop. Est 3 210, ,272 93,647 Wtd % (95% C.I.) 2 ( ) ( ) ( ) Wtd Pop. Est 3 94,379 57,299 32,343 Wtd % (95% C.I.) 2 ( ) ( ) ( ) Wtd Pop. Est 3 163, ,977 75,033 Wtd % (95% C.I.) 2 ( ) ( ) ( ) Wtd Pop. Est 3 298, , ,492 Wtd % (95% C.I.) 2 ( ) ( ) ( ) Wtd Pop. Est 3 169, ,978 63,517 Wtd % (95% C.I.) 2 ( ) ( ) ( ) Wtd Pop. Est 3 29,149 18,080 9,434 Suggested Citation: Child and Adolescent Measurement Initiative (2012). "Impact of Adequacy on Child, Family Impact and Core Outcomes

3 3 Table 2. Impact of Adequacy on Child, Family Impact and Core Outcomes among CSHCN with ASD Wtd % Prevalence of Adequacy, (95% C.I.) 2 ( ) ( ) Wtd Pop. Est 3 373, ,228 Child and Functional Status Measures Indicator 1: CSHCN whose health conditions consistently affect their daily activities Indicator 2: CSHCN with 11 or more school absences due to illness, age 5 17 years CSHCN experience four or more functional difficulties (either a little or a lot from list of 14) Indicator 12: CSHCN whose families paid $1000 or more out ofpocket in medical expenses in past 12 months Indicator 13: CSHCN whose health conditions cause financial problems for the family Indicator 14: CSHCN whose families spend 11 or more hours per week providing and/or coordinating child's health care Indicator 15: CSHCN whose conditions cause family members to cut back or stop working Family member(s) avoided changing jobs in order to maintain health insurance for child Maternal and Child Bureau System of Care for CSHCN Measures* Outcome #1: CSHCN whose families are partners in shared decision making for child's optimal health Outcome #2: CSHCN who receive coordinated, ongoing, comprehensive care within a medical home Outcome #4: CSHCN who are screened early and continuously for special health care needs Outcome #5: CSHCN who can easily access community based services Outcome #6: CSHCN youth receive services needed for transition to adulthood, age years only Wtd % (95% C.I.) 2 ( ) ( ) Wtd Pop. Est 3 255, ,463 Wtd % (95% C.I.) 2 ( ) ( ) Wtd Pop. Est 3 66,751 56,489 Wtd % (95% C.I.) 2 ( ) ( ) Wtd Pop. Est 3 345, ,562 Wtd % (95% C.I.) 2 ( ) ( ) Wtd Pop. Est 3 183,190 77,466 Wtd % (95% C.I.) 2 ( ) ( ) Wtd Pop. Est 3 214, ,962 Wtd % (95% C.I.) 2 ( ) ( ) Wtd Pop. Est 3 118, ,061 Wtd % (95% C.I.) 2 ( ) ( ) Wtd Pop. Est 3 235, ,223 Wtd % (95% C.I.) 2 ( ) ( ) Wtd Pop. Est 3 144, ,108 Wtd % (95% C.I.) 2 ( ) ( ) Wtd Pop. Est 3 177, ,971 Wtd % (95% C.I.) 2 ( ) ( ) Wtd Pop. Est 3 51, ,586 Wtd % (95% C.I.) 2 ( ) ( ) Wtd Pop. Est 3 297, ,597 Wtd % (95% C.I.) 2 ( ) ( ) Wtd Pop. Est 3 109, ,052 Wtd % (95% C.I.) 2 ( ) ( ) Wtd Pop. Est 3 18,165 40,098 Suggested Citation: Child and Adolescent Measurement Initiative (2012). "Impact of Adequacy on Child, Family Impact and Core Outcomes

4 4 Table 3. Impact of Type and Adequacy on Child, Family Impact and Core Outcomes among CSHCN with ASD Prevalence of Type & Adequacy, Child and Functional Status Measures Indicator 1: CSHCN whose health conditions consistently affect their daily activities Indicator 2: CSHCN with 11 or more school absences due to illness, age 5 17 years CSHCN experience four or more functional difficulties (either a little or a lot from list of 14) Indicator 12: CSHCN whose families paid $1000 or more out of pocket in medical expenses in past 12 months Indicator 13: CSHCN whose health conditions cause financial problems for the family Indicator 14: CSHCN whose families spend 11 or more hours per week providing and/or coordinating child's health care Indicator 15: CSHCN whose conditions cause family members to cut back or stop working Family member(s) avoided changing jobs in order to maintain health insurance for child Public & Wtd % (95% C.I.) 2 ( ) ( ) ( ) ( ) ( ) ( ) Wtd Pop. Est 3 167, , ,252 89,705 75,678 67,248 Wtd % (95% C.I.) 2 ( ) ( ) ( ) ( ) ( ) ( ) Wtd Pop. Est 3 99, , ,879 61,277 59,962 50,847 Wtd % (95% C.I.) 2 ( ) ( ) ( ) ( ) ( ) ( ) Wtd Pop. Est 3 12,580 31,302 30,201 24,266 8,862 10,529 Wtd % (95% C.I.) 2 ( ) ( ) ( ) ( ) ( ) ( ) Wtd Pop. Est 3 143, , ,372 83,137 70,324 65,491 Wtd % (95% C.I.) 2 ( ) ( ) ( ) ( ) ( ) ( ) Wtd Pop. Est 3 50, ,020 15,786 21,735 10,652 23,208 Wtd % (95% C.I.) 2 ( ) ( ) ( ) ( ) ( ) ( ) Wtd Pop. Est 3 39, ,647 59,704 45,590 23,994 41,979 Wtd % (95% C.I.) 2 ( ) ( ) ( ) ( ) ( ) ( ) Wtd Pop. Est 3 17,182 53,982 67,165 34,451 23,837 25,221 Wtd % (95% C.I.) 2 ( ) ( ) ( ) ( ) ( ) ( ) Wtd Pop. Est 3 60, , ,178 57,905 42,249 43,876 Wtd % (95% C.I.) 2 ( ) ( ) ( ) ( ) ( ) ( ) Wtd Pop. Est 3 53,472 93,128 22,222 22,411 24,783 23,242 true population value 95% of the time. A smaller C.I ranged indicates a more precise estimate; and (3) Estimated number of children in the population after Suggested Citation: Child and Adolescent Measurement Initiative (2012). "Impact of Adequacy on Child, Family Impact and Core Outcomes for CSHCN with ASD". Data Resource Center, supported by Cooperative Agreement 1 U59 MC from the U.S. Department of and Human Services, Resources Administration (HRSA), Maternal and Child Bureau (MCHB). Available at Revised 08/06/12.

5 5 Maternal and Child Bureau System of Care for CSHCN Measures* Outcome #1: CSHCN whose families are partners in shared decision making for child's optimal health Outcome #2: CSHCN who receive coordinated, ongoing, comprehensive care within a medical home Outcome #4: CSHCN who are screened early and continuously for special health care needs Outcome #5: CSHCN who can easily access community based services Outcome #6: CSHCN youth receive services needed for transition to adulthood, age years only Public & Public & Private Public & Wtd % (95% C.I.) 2 ( ) ( ) ( ) ( ) ( ) ( ) Wtd Pop. Est 3 112,506 95, ,216 35,404 53,357 39,970 Wtd % (95% C.I.) 2 ( ) ( ) ( ) ( ) ( ) ( ) Wtd Pop. Est 3 63,257 30,472 47,707 8,810 23,056 9,287 Wtd % (95% C.I.) 2 ( ) ( ) ( ) ( ) ( ) ( ) Wtd Pop. Est 3 133, , ,393 68,910 59,416 56,315 Wtd % (95% C.I.) 2 ( ) ( ) ( ) ( ) ( ) ( ) Wtd Pop. Est 3 107,496 61,087 81,270 23,180 43,736 19,339 Wtd % (95% C.I.) 2 ( ) ( ) ( ) Wtd Pop. Est 3 17,909 11,051 15,273 *Outcome 3 was excluded from this table, because it encompasses health insurance adequacy. Gray cells indicate that sample sizes are too small to meet standards for reliability or precision. true population value 95% of the time. A smaller C.I ranged indicates a more precise estimate; and (3) Estimated number of children in the population after Suggested Citation: Child and Adolescent Measurement Initiative (2012). "Impact of Adequacy on Child, Family Impact and Core Outcomes for CSHCN with ASD". Data Resource Center, supported by Cooperative Agreement 1 U59 MC from the U.S. Department of and Human Services, Resources Administration (HRSA), Maternal and Child Bureau (MCHB). Available at Revised 08/06/12.