1. Our Vision – Healthy Kansans Living in Safe and Sustainable Environments MCH 2015—Planning for the Future: Children and Youth with Special Healthcare Needs Garry Kelley, MS MCH Epidemiologist

2. Our Vision – Healthy Kansans Living in Safe and Sustainable Environments Who Are We Talking About? All KS Children and Youth with special health care needs –Federal MCHB defines as following: have or are at an increased risk for a –chronic physical –developmental, –behavioral, –or emotional condition require health and related services of a type or amount beyond that required by children generally

3. Our Vision – Healthy Kansans Living in Safe and Sustainable Environments Objective/Goal Improve the health and well being of children and youth with disabilities –By Preventing injury, illness, death Through partnerships with medical providers, communities, and families

4. Our Vision – Healthy Kansans Living in Safe and Sustainable Environments Presentation Road Map Children screened early and continuously for special care needsChildren screened early and continuously for special care needs Characteristics and Health of Disabled ChildrenCharacteristics and Health of Disabled Children Children that are identified have:Children that are identified have: –Services are organized for easy use by families –Receive coordinated, on-going, comprehensive care within medical home –Have sufficient insurance to pay for needed services –Youth receive necessary services to successfully manage their care, work, and live independently as adults

5. Our Vision – Healthy Kansans Living in Safe and Sustainable Environments Newborn Screening Incidence Condition Presumptive PositiveConfirmed Congenital Hypothyroidism (CH)4331 Galactosemia (Gal)171 Congenital Adrenal Hyperplasia (CAH)3311 Cystic Fibrosis (CF)97712 Biotinidase80 Hemoglobin3016 Amino Acid 2296 Fatty Acid466 Organic Acid920 Abnormal screens and diagnosed cases from 1 July 2008 to 1 July 2009 Notes: TSH values >60 and HGB includes only disease (no traits) KDHE. BFH. Newborn Screening program data 2008-2009.

6. Our Vision – Healthy Kansans Living in Safe and Sustainable Environments Presentation Road Map Children screened early and continuously for special care needsChildren screened early and continuously for special care needs Characteristics and Health of Disabled ChildrenCharacteristics and Health of Disabled Children Children that are identified have:Children that are identified have: –Services are organized for easy use by families –Receive coordinated, on-going, comprehensive care within medical home –Have sufficient insurance to pay for needed services –Youth receive necessary services to successfully manage their care, work, and live independently as adults

7. Our Vision – Healthy Kansans Living in Safe and Sustainable Environments Percent of Population by Age Group and Number of Disabilities in KS per Individual Number of Disabilities5-1516-2021-64 Age Groups US Census Bureau. American Community Survey 2005-2007. Table B18001

8. Our Vision – Healthy Kansans Living in Safe and Sustainable Environments CYSHCN Homelessness KSDE 1 –506 special ed students recorded in 7 grantee districts Homeless Children 2 –951 (18%) have moderate or severe health problems such as asthma, dental problems, and emotional difficulties. –1320 (25%) have moderate or severe difficulties with emotions, concentration, behavior, and getting along with other people 1)KSDE. Program data 2008. 2)National Center on Homeless Families. Kansas Report Card 2008.

9. Our Vision – Healthy Kansans Living in Safe and Sustainable Environments Percent of KS Children Consistently Impaired with Disability by Age Group HRSA. 2005/06 National Survey of Children with Special Health Care Needs. Data Resource Center. Percent of children with disabilities

10. Our Vision – Healthy Kansans Living in Safe and Sustainable Environments Percent of CYSHCN by Level of Impairment and Race, KS & US HRSA. 2005/06 National Survey of Children with Special Health Care Needs. Data Resource Center. % of Children with Disabilities

11. Our Vision – Healthy Kansans Living in Safe and Sustainable Environments Percent of KS CYSHCN by Level of Impairment and FPL HRSA. 2005/06 National Survey of Children with Special Health Care Needs. Data Resource Center.

12. Our Vision – Healthy Kansans Living in Safe and Sustainable Environments Percent of Population in Poverty by Disability Status and Age, KS & US Age Group (years) US Census Bureau. American Community Survey 2005-2007. Table B18030

13. Our Vision – Healthy Kansans Living in Safe and Sustainable Environments Percent of KS CYSHCN Below Poverty by Disability Type and Age AGE GROUPS (years) US Census Bureau. American Community Survey 2005-2007. Table B18031 -- 18036

14. Our Vision – Healthy Kansans Living in Safe and Sustainable Environments Prevalence Summary Children/youth higher prevalence and greater impairment –Low incomes –Teens –Minorities Households more likely to be in poverty –Mobility and self-care disabilities –Parents of teens

15. Our Vision – Healthy Kansans Living in Safe and Sustainable Environments Percent of CYSHCN by Length of School Absenteeism and Age HRSA. 2005/06 National Survey of Children with Special Health Care Needs. Data Resource Center. % of Children with Disabilities

16. Our Vision – Healthy Kansans Living in Safe and Sustainable Environments Percent of CYSHCN by Length of School Absenteeism and FPL HRSA. 2005/06 National Survey of Children with Special Health Care Needs. Data Resource Center.

17. Our Vision – Healthy Kansans Living in Safe and Sustainable Environments Percent of KS CYSHCN by Length of School Absenteeism and Insurance Type HRSA. 2005/06 National Survey of Children with Special Health Care Needs. Data Resource Center.

18. Our Vision – Healthy Kansans Living in Safe and Sustainable Environments Summary School Absenteeism Individuals missed more days –6-11 years old Teens missed for longer periods –Public insurance –Low income –Functional and services with medications

19. Our Vision – Healthy Kansans Living in Safe and Sustainable Environments Presentation Road Map Children screened early and continuously for special care needsChildren screened early and continuously for special care needs Characteristics and Health of Disabled ChildrenCharacteristics and Health of Disabled Children Children that are identified have:Children that are identified have: –Services are organized for easy use by families –Receive coordinated, on-going, comprehensive care within medical home –Have sufficient insurance to pay for needed services –Youth receive necessary services to successfully manage their care, work, and live independently as adults

20. Our Vision – Healthy Kansans Living in Safe and Sustainable Environments National CSHCN Survey Impact on Parents Employment Definition Yes to either of 2 questions –Have you or other family members stopped working because of child’s health condition(s)? –Have you or other family members cut down on the hours you work because of child’s health?

21. Our Vision – Healthy Kansans Living in Safe and Sustainable Environments Percent of CYSHCN Impact on Families’ Employment by FPL, IA & KS HRSA. 2005/06 National Survey of Children with Special Health Care Needs. Data Resource Center.

22. Our Vision – Healthy Kansans Living in Safe and Sustainable Environments Percent CYSHCN Impact Families’ Employment by Disability Type, IA & KS HRSA. 2005/06 National Survey of Children with Special Health Care Needs. Data Resource Center.

23. Our Vision – Healthy Kansans Living in Safe and Sustainable Environments Summary CYSHCN Impact Families’ Employment 1/5 Kansans with disabled children Roughly equal races More common in –Young (0-5 years) –<200% FPL –Functional 2/5 CYSHCN providers always asked if health conditions are affecting family life 1 1) KDHE. BFH. CYSHCN Family Survey (2009).

24. Our Vision – Healthy Kansans Living in Safe and Sustainable Environments Presentation Road Map Children screened early and continuously for special care needsChildren screened early and continuously for special care needs Characteristics and Health of Disabled ChildrenCharacteristics and Health of Disabled Children Children that are identified have:Children that are identified have: –Services are organized for easy use by families –Receive coordinated, on-going, comprehensive care within medical home –Have sufficient insurance to pay for needed services –Youth receive necessary services to successfully manage their care, work, and live independently as adults

25. Our Vision – Healthy Kansans Living in Safe and Sustainable Environments National CSHCN Medical Home Definition Medical Home includes following 22 items –personal doctor or nurse –‘Usually or always’ Family Centered-Care providers spend enough time providers listen carefully providers sensitive to family’s values and customs providers give needed information providers feel like partner in decisions receives an interpreter, if needed no problem receiving referral

26. Our Vision – Healthy Kansans Living in Safe and Sustainable Environments CSHCN Medical Home II –Does not get sick or routine care from ER, hospital, Mexico, or no place in particular –Someone helps to arrange or coordinate –Family doesn’t need or want extra help –Satisfied with providers communication –Satisfied communication between provider and school, early intervention program, child care providers, vocational education or rehabilitation program

27. Our Vision – Healthy Kansans Living in Safe and Sustainable Environments % CYSHCN with No Medical Home by FPL HRSA. 2005/06 National Survey of Children with Special Health Care Needs. Data Resource Center.

28. Our Vision – Healthy Kansans Living in Safe and Sustainable Environments % CYSHCN with No Medical Home by Insurance Type, IA & KS HRSA. 2005/06 National Survey of Children with Special Health Care Needs. Data Resource Center.

29. Our Vision – Healthy Kansans Living in Safe and Sustainable Environments % CYSHCN with No Medical Home by Disability Type, IA & KS HRSA. 2005/06 National Survey of Children with Special Health Care Needs. Data Resource Center.

30. Our Vision – Healthy Kansans Living in Safe and Sustainable Environments Summary Medical Home 2/5 disabled Kansas children don’t have one Consistent across age groups Disparity greater in persons with –Public insurance –Functional and therapy

31. Our Vision – Healthy Kansans Living in Safe and Sustainable Environments CYSHCN Active Primary Care Providers KDHE. BFH. Children and Youth with Special Health Care Needs program data. Notes 1) All providers are not necessarily currently providing care for CYSHCN. 2) Areas of practice included Pediatrics, and Family Practice/General Practice. *No Medicaid provider (2008 Medicaid FTE) * * * *

32. Our Vision – Healthy Kansans Living in Safe and Sustainable Environments CYSHCN Active Dental Care Providers KDHE. BFH. Children and Youth with Special Health Care Needs program data. * * * * * * * * * * * * * * ** * * * * * * * Notes 1) All providers are not necessarily currently providing care for CYSHCN. 2) Area of practice is General Dentistry/Treatment. * No Medicaid Provider (2008 FTE)

33. Our Vision – Healthy Kansans Living in Safe and Sustainable Environments CYSHCN Survey Results Families report –67% very satisfied communication among medical staff –41% primary care physician always gets an update from the specialist Physicians – <1/3 care providers always send patient evaluation and treatment plans to specialty clinic –2/3 providers usually receive specialist contact information –<3/4 of care providers usually receive patient evaluation and treatment plans ≤ 2 weeks KDHE. BFH. CYSHCN: Family Survey (2009), and Physician Survey (2009).

34. Our Vision – Healthy Kansans Living in Safe and Sustainable Environments Presentation Road Map Children screened early and continuously for special care needsChildren screened early and continuously for special care needs Characteristics and Health of Disabled ChildrenCharacteristics and Health of Disabled Children Children that are identified have:Children that are identified have: –Services are organized for easy use by families –Receive coordinated, on-going, comprehensive care within medical home –Have sufficient insurance to pay for needed services –Youth receive necessary services to successfully manage their care, work, and live independently as adults

35. Our Vision – Healthy Kansans Living in Safe and Sustainable Environments National CSHCN Survey Adequate Insurance Definition –Responses of "Usually or Always" to all 3 Does child’s health insurance offer benefits or cover services that meet their needs? Are the costs not covered by child's health insurance reasonable? Does child’s health insurance company allow them to see the health care providers that the child needs?

36. Our Vision – Healthy Kansans Living in Safe and Sustainable Environments Percent of CYSHCN with Inadequate Insurance by FPL, KS & ME HRSA. 2005/06 National Survey of Children with Special Health Care Needs. Data Resource Center.

37. Our Vision – Healthy Kansans Living in Safe and Sustainable Environments Percent of CYSHCN with Inadequate Insurance by Insurance Type, KS & RI HRSA. 2005/06 National Survey of Children with Special Health Care Needs. Data Resource Center.

38. Our Vision – Healthy Kansans Living in Safe and Sustainable Environments Percent of Children with Inadequate Insurance by Disability Type, KS & ME HRSA. 2005/06 National Survey of Children with Special Health Care Needs. Data Resource Center.

39. Our Vision – Healthy Kansans Living in Safe and Sustainable Environments Summary Inadequate Insurance 1/3 disabled children inadequate All races, ages, and family structures roughly equal Disproportionately affects –Private –100-200% FPL –Functional and therapy

40. Our Vision – Healthy Kansans Living in Safe and Sustainable Environments Percent of CYSHCN Families with Financial Strain by Child’s Age, HI & KS HRSA. 2005/06 National Survey of Children with Special Health Care Needs. Data Resource Center.

41. Our Vision – Healthy Kansans Living in Safe and Sustainable Environments Percent of Families with Financial Strain by Child’s Gender HRSA. 2005/06 National Survey of Children with Special Health Care Needs. Data Resource Center.

42. Our Vision – Healthy Kansans Living in Safe and Sustainable Environments Percent of Families with Financial Strain by FPL HRSA. 2005/06 National Survey of Children with Special Health Care Needs. Data Resource Center.

43. Our Vision – Healthy Kansans Living in Safe and Sustainable Environments Percent of CYSHCN Families with Financial Strain by Insurance Type, HI & KS HRSA. 2005/06 National Survey of Children with Special Health Care Needs. Data Resource Center.

44. Our Vision – Healthy Kansans Living in Safe and Sustainable Environments Percent of CYSHCN Families with Financial Strain by Child’s Disability Type, HI & KS HRSA. 2005/06 National Survey of Children with Special Health Care Needs. Data Resource Center.

45. Our Vision – Healthy Kansans Living in Safe and Sustainable Environments Summary Financial Strain 1/5 disabled Kansas children More common in –Males –Young (0-5 years) –Low income (<200%) –Functional disabilities –Both public and private insurance

46. Our Vision – Healthy Kansans Living in Safe and Sustainable Environments Presentation Road Map Children screened early and continuously for special care needsChildren screened early and continuously for special care needs Characteristics and Health of Disabled ChildrenCharacteristics and Health of Disabled Children Children that are identified have:Children that are identified have: –Services are organized for easy use by families –Receive coordinated, on-going, comprehensive care within medical home –Have sufficient insurance to pay for needed services –Youth receive necessary services to successfully manage their care, work, and live independently as adults

47. Our Vision – Healthy Kansans Living in Safe and Sustainable Environments National CSHCN Transition Definition Successful transition has all the following for children aged 12-17 years old –Doctor discusses shift to adult provider about changing needs insurance coverage –Doctor encourages age appropriate self-care

48. Our Vision – Healthy Kansans Living in Safe and Sustainable Environments Percent of YSHCN Not Successfully Transitioning by Race, KS & MO HRSA. 2005/06 National Survey of Children with Special Health Care Needs. Data Resource Center.

49. Our Vision – Healthy Kansans Living in Safe and Sustainable Environments Percent of YSHCN Not Successfully Transitioning by Family Structure, KS & MO HRSA. 2005/06 National Survey of Children with Special Health Care Needs. Data Resource Center.

50. Our Vision – Healthy Kansans Living in Safe and Sustainable Environments Percent of YSHCN Not Successfully Transitioning by FPL, KS & MO HRSA. 2005/06 National Survey of Children with Special Health Care Needs. Data Resource Center.

51. Our Vision – Healthy Kansans Living in Safe and Sustainable Environments Percent of YSHCN Not Successfully Transitioning by Insurance Type, KS & MO HRSA. 2005/06 National Survey of Children with Special Health Care Needs. Data Resource Center.

52. Our Vision – Healthy Kansans Living in Safe and Sustainable Environments Percent of YSHCN Not Successfully Transitioning by Disability Type, KS & MO HRSA. 2005/06 National Survey of Children with Special Health Care Needs. Data Resource Center.

53. Our Vision – Healthy Kansans Living in Safe and Sustainable Environments ACS Education Definitions 18-34 year olds Enrollment –At any time in last 3 months did attend school or college? –specified undergraduate or graduate/or professional school College Attendance (highest degree) –College credit (including <1 year) but no degree –Associate and higher degrees

54. Our Vision – Healthy Kansans Living in Safe and Sustainable Environments Percent of 18-34 year olds Enrolled in Higher Education TotalEnrollment Enrollment Type US Census Bureau. American Community Survey 2005-2007. Tables B18011 and B18015

55. Our Vision – Healthy Kansans Living in Safe and Sustainable Environments DisabilitiesLimitations US Census Bureau. American Community Survey 2005-2007. Tables B18012 -- B18016 Percent of KS 18-34 year olds SHCN Enrolled/attended College by Disability Type employment

56. Our Vision – Healthy Kansans Living in Safe and Sustainable Environments ACS Employment Definition Employed (23, and 29-31) –Included: all civilians 16 years old and over who either 1.“at work” those who did any work at all during the reference week as paid employees, worked in their own business or profession, worked on their own farm, or worked 15 hours or more as unpaid workers on a family farm or in a family business 2.“with a job but not at work” those who did not work during the reference week but had jobs or businesses from which they were temporarily absent due to illness, bad weather, industrial dispute, vacation, or other personal reasons. –Excluded are 1.people whose only activity consisted of work around the house or unpaid volunteer work for religious, charitable, and similar organizations 2.all institutionalized people 3.people on active duty in the US Armed Forces.

57. Our Vision – Healthy Kansans Living in Safe and Sustainable Environments Percent of KS 16-34 years olds Employed by Disability Status and Race/Ethnicity Races Ethnicity black whiteblacknative US Census Bureau. American Community Survey 2005-2007. Tables B18020A-18020F

58. Our Vision – Healthy Kansans Living in Safe and Sustainable Environments DisabilitiesLimitations US Census Bureau. American Community Survey 2005-2007. Tables B18021 -18026 Percent of KS 16-34 year olds SHCN Employed by Disability Type employment

59. Our Vision – Healthy Kansans Living in Safe and Sustainable Environments Transition Summary Increase transitioning difficulties in –Minorities –Single mother families –Lower incomes –Publicly insured –Functional/mobility Physical has higher education but less are employed

60. Our Vision – Healthy Kansans Living in Safe and Sustainable Environments CYSHCN Survey Information Transitioning 1/3 personal copy of medical records 1/5 written transition plan 3/5 Families get specific information and what changes to expect in health Large percentage respondents did not need education information or education on transitioning skills –No age differences found in managing ones health at home having skills to live independently in all surveyed areas Physicians report difficulty finding adult providers –1/3 usually plan for the youth to assume independent management KDHE. BFH. CYSHCN Family Survey 2009 and Physician Survey 2009

61. Our Vision – Healthy Kansans Living in Safe and Sustainable Environments Questions? Garry Kelley, MS MCH Epidemiologist

62. Our Vision – Healthy Kansans Living in Safe and Sustainable Environments ACS Disability Definition disability defined as a ‘long lasting’: –sensory –physical –mental –emotional condition –or other conditions that make it difficult for a person to do functional or participatory activities such as seeing, hearing, walking, climbing stairs, learning, remembering, concentrating, dressing, bathing, going outside the home, or working at a job’

63. Our Vision – Healthy Kansans Living in Safe and Sustainable Environments National CSHCN Disability Definition Children 0-17 years Services sought for any medical, behavioral or other health condition lasting or expecting last ≥ 12 months Derived questions N1-N5a –need or use medicine prescribed by a doctor, other than vitamins –use more medical care, mental health or educational services than is usual for most children of the same age –limited or prevented in any way in ability to do the things most children of the same age can do –need or get special therapy such as physical, occupational, or speech therapy –requires treatment or counseling

64. Our Vision – Healthy Kansans Living in Safe and Sustainable Environments National CSHCN Severity Definition Derived 2 questions. –In the past 12 months (C3Q02) how often has the child’s conditions affected the child’s ability to do things other children of their age do (C3Q03) how much limitation does child experience Consistently Affected are those with responses of "Usually or Always" on C3Q02 AND/OR a response of "A great deal" on C3Q03

65. Our Vision – Healthy Kansans Living in Safe and Sustainable Environments ACS Poverty Definition Derived from income (46) and household relationships in last 12 months –thresholds relationships depend on : (2)size of family (2) number of related children (4)Age of householder for 1- and 2-person families –poor=total income of the householder below the appropriate federal poverty threshold income of unrelated people are not factored in nor are they counted in household size –nonfamily householders own income is compared with the appropriate threshold

66. Our Vision – Healthy Kansans Living in Safe and Sustainable Environments National CSCHN and NCHS Disability Type Definitions Disabilities expected or last >=1 year Services needed for any medical, behavioral or other health condition –Functional Child’s ability limited or prevented in any way to do things appropriate for age –Services use Only uses more medical care, mental health or educational services needs or gets special therapy needs treatment or receives counseling not functional –Rx meds Only currently need or use medicine prescribed by a doctor but no services or functional disability –Rx meds AND service use

67. Our Vision – Healthy Kansans Living in Safe and Sustainable Environments ACS Disability Type Definitions I Sensory –(15a) Does person have blindness, deafness, severe vision or hearing impairment lasting 6 months or longer? Physical –(15b) Does person have a condition lasting 6 months or longer that substantially limits one or more basic physical activities such as walking, climbing stairs, reaching, lifting, or carrying?

68. Our Vision – Healthy Kansans Living in Safe and Sustainable Environments ACS Disability Type Definitions II Mental –(16a) Does person have a physical, mental, or emotional condition lasting 6 months or more that made it difficult learning, remembering, or concentrating? Self-Care –(16b) Does person have a physical, mental, or emotional condition lasting 6 months or more that made it difficult dressing, bathing, or getting around inside the home?

69. Our Vision – Healthy Kansans Living in Safe and Sustainable Environments ACS Limitations Definitions Mobility –(17a) Does person have a physical, mental, or emotional condition lasting 6 months or more that made it difficult going outside the home alone to shop or visit a doctor’s office? Employment –(17b) Does person have a physical, mental, or emotional condition lasting 6 months or more that made it difficult working at a job or business?