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MCH 2015—Planning for the Future: Children and Youth with Special Healthcare Needs

MCH 2015—Planning for the Future: Children and Youth with Special Healthcare Needs. Garry Kelley, MS MCH Epidemiologist. 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

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MCH 2015—Planning for the Future: Children and Youth with Special Healthcare Needs

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  1. MCH 2015—Planning for the Future: Children and Youth with Special Healthcare Needs Garry Kelley, MS MCH Epidemiologist

  2. 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. 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. Presentation Road Map • Children screened early and continuously for special care needs • Characteristics and Health of Disabled Children • 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. Newborn Screening Incidence 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. Presentation Road Map • Children screened early and continuously for special care needs • Characteristics and Health of Disabled Children • 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. Percent of Population by Age Group and Number of Disabilities in KS per Individual Number of Disabilities Age Groups US Census Bureau. American Community Survey 2005-2007. Table B18001

  8. CYSHCN Homelessness • KSDE1 • 506 special ed students recorded in 7 grantee districts • Homeless Children2 • 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 • KSDE. Program data 2008. • National Center on Homeless Families. Kansas Report Card 2008.

  9. Percent of KS Children Consistently Impaired with Disability by Age Group Percent of children with disabilities HRSA. 2005/06 National Survey of Children with Special Health Care Needs. Data Resource Center.

  10. Percent of CYSHCN by Level of Impairment and Race, KS & US % of Children with Disabilities HRSA. 2005/06 National Survey of Children with Special Health Care Needs. Data Resource Center.

  11. 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. 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. 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. 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. Percent of CYSHCN by Length of School Absenteeism and Age % of Children with Disabilities HRSA. 2005/06 National Survey of Children with Special Health Care Needs. Data Resource Center.

  16. 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. 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. 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. Presentation Road Map • Children screened early and continuously for special care needs • Characteristics and Health of Disabled Children • 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. 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. 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. 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. 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 life1 1) KDHE. BFH. CYSHCN Family Survey (2009).

  24. Presentation Road Map • Children screened early and continuously for special care needs • Characteristics and Health of Disabled Children • 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. 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. 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. % CYSHCN with No Medical Home by FPL HRSA. 2005/06 National Survey of Children with Special Health Care Needs. Data Resource Center.

  28. % 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. % 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. 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. CYSHCN Active Primary Care Providers * * * * 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) KDHE. BFH. Children and Youth with Special Health Care Needs program data.

  32. * * * * * * * * * * * * * * * * * * * * * * * CYSHCN Active Dental Care Providers 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) KDHE. BFH. Children and Youth with Special Health Care Needs program data.

  33. 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. Presentation Road Map • Children screened early and continuously for special care needs • Characteristics and Health of Disabled Children • 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. 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. 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. 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. 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. 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. 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. 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. Percent of Families with Financial Strain by FPL HRSA. 2005/06 National Survey of Children with Special Health Care Needs. Data Resource Center.

  43. 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. 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. 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. Presentation Road Map • Children screened early and continuously for special care needs • Characteristics and Health of Disabled Children • 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. 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. 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. 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. 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.

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