Our Vision – Healthy Kansans Living in Safe and Sustainable EnvironmentsOur Vision – Healthy Kansans Living in Safe and Sustainable Environments
MCH 2015—Planning for the Future: MCH 2015—Planning for the Future: Children and Youth with Special Children and Youth with Special
Healthcare NeedsHealthcare Needs
Garry Kelley, MS
MCH Epidemiologist
Our Vision – Healthy Kansans Living in Safe and Sustainable EnvironmentsOur Vision – Healthy Kansans Living in Safe and Sustainable Environments
Who Are We Talking About?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
Our Vision – Healthy Kansans Living in Safe and Sustainable EnvironmentsOur Vision – Healthy Kansans Living in Safe and Sustainable Environments
Objective/GoalObjective/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
Our Vision – Healthy Kansans Living in Safe and Sustainable EnvironmentsOur Vision – Healthy Kansans Living in Safe and Sustainable Environments
Presentation Road MapPresentation Road Map
• Children screened early and Children screened early and continuously for special care needscontinuously for special care needs
• Characteristics and Health of Disabled Characteristics and Health of Disabled ChildrenChildren
• Children that are identified have:Children that are identified have:– Services are organized for easy use by familiesServices are organized for easy use by families– Receive coordinated, on-going, comprehensive care Receive coordinated, on-going, comprehensive care
within medical homewithin medical home– Have sufficient insurance to pay for needed servicesHave sufficient insurance to pay for needed services– Youth receive necessary services to successfully manage Youth receive necessary services to successfully manage
their care, work, and live independently as adultstheir care, work, and live independently as adults
Our Vision – Healthy Kansans Living in Safe and Sustainable EnvironmentsOur Vision – Healthy Kansans Living in Safe and Sustainable Environments
Newborn Screening IncidenceNewborn Screening Incidence
Condition
Presumptive
Positive Confirmed
Congenital Hypothyroidism (CH) 43 31
Galactosemia (Gal) 17 1
Congenital Adrenal Hyperplasia (CAH) 331 1
Cystic Fibrosis (CF) 977 12
Biotinidase 8 0
Hemoglobin 30 16
Amino Acid 229 6
Fatty Acid 46 6
Organic Acid 92 0
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.
Our Vision – Healthy Kansans Living in Safe and Sustainable EnvironmentsOur Vision – Healthy Kansans Living in Safe and Sustainable Environments
Presentation Road MapPresentation Road Map
• Children screened early and continuously Children screened early and continuously for special care needsfor special care needs
• Characteristics and Health of Disabled Characteristics and Health of Disabled ChildrenChildren
• Children that are identified have:Children that are identified have:– Services are organized for easy use by familiesServices are organized for easy use by families– Receive coordinated, on-going, comprehensive care Receive coordinated, on-going, comprehensive care
within medical homewithin medical home– Have sufficient insurance to pay for needed servicesHave sufficient insurance to pay for needed services– Youth receive necessary services to successfully manage Youth receive necessary services to successfully manage
their care, work, and live independently as adultstheir care, work, and live independently as adults
Our Vision – Healthy Kansans Living in Safe and Sustainable EnvironmentsOur Vision – Healthy Kansans Living in Safe and Sustainable Environments
Percent of Population by Age Group and Percent of Population by Age Group and Number of Disabilities in KS per IndividualNumber of Disabilities in KS per Individual
1.7
2.6
6.4
5.4 5.4
6.8
3.3
2.1
0.8
3.6
5.4
7.2
0
1
2
3
4
5
6
7
8
1 >=2 1 >=2 1 >=2
% o
f P
op
ula
tio
n
wit
h D
isa
bil
ity
MaleFemale
Number of Disabilities
5-155-15 16-20 21-6421-64 Age GroupsAge Groups
US Census Bureau. American Community Survey 2005-2007. Table B18001
Our Vision – Healthy Kansans Living in Safe and Sustainable EnvironmentsOur Vision – Healthy Kansans Living in Safe and Sustainable Environments
CYSHCN HomelessnessCYSHCN 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
1) KSDE. Program data 2008.
2) National Center on Homeless Families. Kansas Report Card 2008.
Our Vision – Healthy Kansans Living in Safe and Sustainable EnvironmentsOur Vision – Healthy Kansans Living in Safe and Sustainable Environments
Percent of KS Children Consistently Percent of KS Children Consistently Impaired with Disability by Age GroupImpaired with Disability by Age Group
HRSA. 2005/06 National Survey of Children with Special Health Care Needs. Data Resource Center.
14.4
21.1
24.7
0 5 10 15 20 25 30 35
0-5 years
6-11 years
12-17 years
Percent of children with disabilities
Our Vision – Healthy Kansans Living in Safe and Sustainable EnvironmentsOur Vision – Healthy Kansans Living in Safe and Sustainable Environments
Percent of CYSHCN by Level of Percent of CYSHCN by Level of Impairment and Race, KS & USImpairment and Race, KS & US
HRSA. 2005/06 National Survey of Children with Special Health Care Needs. Data Resource Center.
4
37
18 20
32
232627
22
3026
30
45
32
20
413944
3738
0
10
20
30
40
Hispan
ic
Whi
te, n
on-H
isp
Black,
non
-Hisp
Mul
ti-ra
cial, n
on-H
isp
Other
, non
-Hisp
% o
f d
isa
ble
d c
hild
ren
KS ConsistentlyUS ConsistentlyKS ModeratelyUS Moderately
% o
f C
hild
ren
wit
h D
isab
ilit
ies
Our Vision – Healthy Kansans Living in Safe and Sustainable EnvironmentsOur Vision – Healthy Kansans Living in Safe and Sustainable Environments
Percent of KS CYSHCN Percent of KS CYSHCN by Level of Impairment and FPL by Level of Impairment and FPL
HRSA. 2005/06 National Survey of Children with Special Health Care Needs. Data Resource Center.
34.936.6
46.7
35.6
29.1 26.9
18.415
0
10
20
30
40
50
0% -99% FPL
100% -199%FPL
200% -399%FPL
>=400%FPL
% o
f C
hild
ren
wit
h D
isa
bili
tie
sModerately
Consistently
Our Vision – Healthy Kansans Living in Safe and Sustainable EnvironmentsOur Vision – Healthy Kansans Living in Safe and Sustainable Environments
Percent of Population in Poverty by Percent of Population in Poverty by Disability Status and Age, KS & USDisability Status and Age, KS & US
29.4
22.5 23.8
8.5
18.6
13.2
25.226.928.5
9.2
18.816.8
0
5
10
15
20
25
30
5-15 16-20 21-64
% o
f P
op
ula
tio
n
be
low
Po
ve
rty
KS AnyDisability
KS NoDisability
US AnyDisability
US NoDisability
Age Group (years)US Census Bureau. American Community Survey 2005-2007. Table B18030
Our Vision – Healthy Kansans Living in Safe and Sustainable EnvironmentsOur Vision – Healthy Kansans Living in Safe and Sustainable Environments
Percent of KS CYSHCN Below Percent of KS CYSHCN Below Poverty by Disability Type and AgePoverty by Disability Type and Age
21
27 25
3032
2422
30
34
2323
3033
22
3029
0
5
10
15
20
25
30
35
5-15 16-20 21-64
% o
f P
op
ula
tio
n w
ith
D
isa
bili
ty in
Po
ve
rty
Sensory
Physical
Mental
Self-Care
Mobility
Employment
AGE GROUPS (years)US Census Bureau. American Community Survey 2005-2007. Table B18031 -- 18036
Our Vision – Healthy Kansans Living in Safe and Sustainable EnvironmentsOur Vision – Healthy Kansans Living in Safe and Sustainable Environments
Prevalence SummaryPrevalence 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
Our Vision – Healthy Kansans Living in Safe and Sustainable EnvironmentsOur Vision – Healthy Kansans Living in Safe and Sustainable Environments
Percent of CYSHCN by Length of Percent of CYSHCN by Length of School Absenteeism and AgeSchool Absenteeism and Age
11.512.3
18.1
21.5
17.2
8.5
18.8
11.914.6
0
5
10
15
20
25
4-6 days 7-10 days >=11 days
% o
f d
isa
ble
d c
hild
ren
0 - 5 yrs old
6 - 11 yrs old
12 - 17 yrs old
HRSA. 2005/06 National Survey of Children with Special Health Care Needs. Data Resource Center.
% o
f C
hild
ren
wit
h D
isab
ilit
ies
Our Vision – Healthy Kansans Living in Safe and Sustainable EnvironmentsOur Vision – Healthy Kansans Living in Safe and Sustainable Environments
20
16
19
1514
24
8
13
20
9
1618
0
5
10
15
20
25
4-6 days 7-10 days >=11 days
% o
f C
hild
ren
wit
h D
isa
bili
tie
s0% - 99% FPL100% - 199% FPL200% - 399% FPL>=400% FPL
Percent of CYSHCN by Length of Percent of CYSHCN by Length of School Absenteeism and FPLSchool Absenteeism and FPL
HRSA. 2005/06 National Survey of Children with Special Health Care Needs. Data Resource Center.
Our Vision – Healthy Kansans Living in Safe and Sustainable EnvironmentsOur Vision – Healthy Kansans Living in Safe and Sustainable Environments
Percent of KS CYSHCN by Length of Percent of KS CYSHCN by Length of School Absenteeism and Insurance TypeSchool Absenteeism and Insurance Type
19.2
14
9.5
19.3
12.4
22.9
0
5
10
15
20
25
4-6 days 7-10 days >=11 days
% o
f C
hild
ren
wit
h D
isa
bili
tie
s
Private only
Public only
HRSA. 2005/06 National Survey of Children with Special Health Care Needs. Data Resource Center.
Our Vision – Healthy Kansans Living in Safe and Sustainable EnvironmentsOur Vision – Healthy Kansans Living in Safe and Sustainable Environments
Summary School AbsenteeismSummary School Absenteeism
• Individuals missed more days– 6-11 years old
• Teens missed for longer periods
– Public insurance– Low income– Functional and services with
medications
Our Vision – Healthy Kansans Living in Safe and Sustainable EnvironmentsOur Vision – Healthy Kansans Living in Safe and Sustainable Environments
Presentation Road MapPresentation Road Map
• Children screened early and continuously Children screened early and continuously for special care needsfor special care needs
• Characteristics and Health of Disabled Characteristics and Health of Disabled ChildrenChildren
• Children that are identified have: Children that are identified have: – Services are organized for easy use by familiesServices are organized for easy use by families– Receive coordinated, on-going, comprehensive care Receive coordinated, on-going, comprehensive care
within medical homewithin medical home– Have sufficient insurance to pay for needed servicesHave sufficient insurance to pay for needed services– Youth receive necessary services to successfully manage Youth receive necessary services to successfully manage
their care, work, and live independently as adultstheir care, work, and live independently as adults
Our Vision – Healthy Kansans Living in Safe and Sustainable EnvironmentsOur Vision – Healthy Kansans Living in Safe and Sustainable Environments
National CSHCN Survey Impact on National CSHCN Survey Impact on Parents Employment DefinitionParents 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?
Our Vision – Healthy Kansans Living in Safe and Sustainable EnvironmentsOur Vision – Healthy Kansans Living in Safe and Sustainable Environments
Percent of CYSHCN Impact on Percent of CYSHCN Impact on Families’ Employment by FPL, IA & KSFamilies’ Employment by FPL, IA & KS
HRSA. 2005/06 National Survey of Children with Special Health Care Needs. Data Resource Center.
Our Vision – Healthy Kansans Living in Safe and Sustainable EnvironmentsOur Vision – Healthy Kansans Living in Safe and Sustainable Environments
Percent CYSHCN Impact Families’ Percent CYSHCN Impact Families’ Employment by Disability Type, IA & KSEmployment by Disability Type, IA & KS
HRSA. 2005/06 National Survey of Children with Special Health Care Needs. Data Resource Center.
Our Vision – Healthy Kansans Living in Safe and Sustainable EnvironmentsOur Vision – Healthy Kansans Living in Safe and Sustainable Environments
Summary CYSHCN Summary CYSHCN Impact Families’ EmploymentImpact 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).
Our Vision – Healthy Kansans Living in Safe and Sustainable EnvironmentsOur Vision – Healthy Kansans Living in Safe and Sustainable Environments
Presentation Road MapPresentation Road Map
• Children screened early and continuously Children screened early and continuously for special care needsfor special care needs
• Characteristics and Health of Disabled Characteristics and Health of Disabled ChildrenChildren
• Children that are identified have: Children that are identified have: – Services are organized for easy use by familiesServices are organized for easy use by families
– Receive coordinated, on-going, comprehensive care Receive coordinated, on-going, comprehensive care within medical homewithin medical home
– Have sufficient insurance to pay for needed servicesHave sufficient insurance to pay for needed services– Youth receive necessary services to successfully manage Youth receive necessary services to successfully manage
their care, work, and live independently as adultstheir care, work, and live independently as adults
Our Vision – Healthy Kansans Living in Safe and Sustainable EnvironmentsOur Vision – Healthy Kansans Living in Safe and Sustainable Environments
National CSHCN National CSHCN Medical Home DefinitionMedical 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
Our Vision – Healthy Kansans Living in Safe and Sustainable EnvironmentsOur Vision – Healthy Kansans Living in Safe and Sustainable Environments
CSHCN Medical Home CSHCN Medical Home IIII
– 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
Our Vision – Healthy Kansans Living in Safe and Sustainable EnvironmentsOur Vision – Healthy Kansans Living in Safe and Sustainable Environments
% CYSHCN with % CYSHCN with No Medical Home by FPL No Medical Home by FPL
60.952.8
37 36.9
0
20
40
60
80
0% -99% FPL
100% -199%FPL
200% -399%FPL
>=400%FPL
% o
f C
hild
ren
wit
h D
isa
bili
tie
s
HRSA. 2005/06 National Survey of Children with Special Health Care Needs. Data Resource Center.
Our Vision – Healthy Kansans Living in Safe and Sustainable EnvironmentsOur Vision – Healthy Kansans Living in Safe and Sustainable Environments
% CYSHCN with No Medical % CYSHCN with No Medical Home by Insurance Type, IA & KS Home by Insurance Type, IA & KS
HRSA. 2005/06 National Survey of Children with Special Health Care Needs. Data Resource Center.
Our Vision – Healthy Kansans Living in Safe and Sustainable EnvironmentsOur Vision – Healthy Kansans Living in Safe and Sustainable Environments
% CYSHCN with No Medical % CYSHCN with No Medical Home by Disability Type, IA & KS Home by Disability Type, IA & KS
HRSA. 2005/06 National Survey of Children with Special Health Care Needs. Data Resource Center.
Our Vision – Healthy Kansans Living in Safe and Sustainable EnvironmentsOur Vision – Healthy Kansans Living in Safe and Sustainable Environments
Summary Medical HomeSummary 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
Our Vision – Healthy Kansans Living in Safe and Sustainable EnvironmentsOur Vision – Healthy Kansans Living in Safe and Sustainable Environments
CYSHCN Active CYSHCN Active Primary Care ProvidersPrimary 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)
*
*
*
*
Our Vision – Healthy Kansans Living in Safe and Sustainable EnvironmentsOur Vision – Healthy Kansans Living in Safe and Sustainable Environments
CYSHCN Active CYSHCN Active Dental Care ProvidersDental 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)
Our Vision – Healthy Kansans Living in Safe and Sustainable EnvironmentsOur Vision – Healthy Kansans Living in Safe and Sustainable Environments
CYSHCN Survey ResultsCYSHCN 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).
Our Vision – Healthy Kansans Living in Safe and Sustainable EnvironmentsOur Vision – Healthy Kansans Living in Safe and Sustainable Environments
Presentation Road MapPresentation Road Map
• Children screened early and continuously for Children screened early and continuously for special care needsspecial care needs
• Characteristics and Health of Disabled Characteristics and Health of Disabled ChildrenChildren
• Children that are identified have:Children that are identified have: – Services are organized for easy use by familiesServices are organized for easy use by families– Receive coordinated, on-going, comprehensive care within Receive coordinated, on-going, comprehensive care within
medical homemedical home
– Have sufficient insurance to pay for needed servicesHave sufficient insurance to pay for needed services– Youth receive necessary services to successfully manage Youth receive necessary services to successfully manage
their care, work, and live independently as adultstheir care, work, and live independently as adults
Our Vision – Healthy Kansans Living in Safe and Sustainable EnvironmentsOur Vision – Healthy Kansans Living in Safe and Sustainable Environments
National CSHCN SurveyNational 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?
Our Vision – Healthy Kansans Living in Safe and Sustainable EnvironmentsOur Vision – Healthy Kansans Living in Safe and Sustainable Environments
Percent of CYSHCN with Percent of CYSHCN with Inadequate Insurance by FPL, KS & MEInadequate Insurance by FPL, KS & ME
HRSA. 2005/06 National Survey of Children with Special Health Care Needs. Data Resource Center.
Our Vision – Healthy Kansans Living in Safe and Sustainable EnvironmentsOur Vision – Healthy Kansans Living in Safe and Sustainable Environments
Percent of CYSHCN with Inadequate Percent of CYSHCN with Inadequate Insurance by Insurance Type, KS & RIInsurance by Insurance Type, KS & RI
HRSA. 2005/06 National Survey of Children with Special Health Care Needs. Data Resource Center.
Our Vision – Healthy Kansans Living in Safe and Sustainable EnvironmentsOur Vision – Healthy Kansans Living in Safe and Sustainable Environments
Percent of Children with Inadequate Percent of Children with Inadequate Insurance by Disability Type, KS & MEInsurance by Disability Type, KS & ME
HRSA. 2005/06 National Survey of Children with Special Health Care Needs. Data Resource Center.
Our Vision – Healthy Kansans Living in Safe and Sustainable EnvironmentsOur Vision – Healthy Kansans Living in Safe and Sustainable Environments
Summary Inadequate InsuranceSummary Inadequate Insurance
• 1/3 disabled children inadequate• All races, ages, and family
structures roughly equal• Disproportionately affects
– Private– 100-200% FPL– Functional and therapy
Our Vision – Healthy Kansans Living in Safe and Sustainable EnvironmentsOur Vision – Healthy Kansans Living in Safe and Sustainable Environments
Percent of CYSHCN Families with Percent of CYSHCN Families with Financial Strain by Child’s Age, HI & Financial Strain by Child’s Age, HI &
KSKS
HRSA. 2005/06 National Survey of Children with Special Health Care Needs. Data Resource Center.
Our Vision – Healthy Kansans Living in Safe and Sustainable EnvironmentsOur Vision – Healthy Kansans Living in Safe and Sustainable Environments
Percent of Families with Percent of Families with Financial Strain by Child’s GenderFinancial Strain by Child’s Gender
HRSA. 2005/06 National Survey of Children with Special Health Care Needs. Data Resource Center.
Our Vision – Healthy Kansans Living in Safe and Sustainable EnvironmentsOur Vision – Healthy Kansans Living in Safe and Sustainable Environments
Percent of Families with Percent of Families with Financial Strain by FPLFinancial Strain by FPL
HRSA. 2005/06 National Survey of Children with Special Health Care Needs. Data Resource Center.
Our Vision – Healthy Kansans Living in Safe and Sustainable EnvironmentsOur Vision – Healthy Kansans Living in Safe and Sustainable Environments
Percent of CYSHCN Families with Percent of CYSHCN Families with Financial Strain by Insurance Type, HI & Financial Strain by Insurance Type, HI &
KSKS
HRSA. 2005/06 National Survey of Children with Special Health Care Needs. Data Resource Center.
Our Vision – Healthy Kansans Living in Safe and Sustainable EnvironmentsOur Vision – Healthy Kansans Living in Safe and Sustainable Environments
Percent of CYSHCN Families with Financial Percent of CYSHCN Families with Financial Strain by Child’s Disability Type, HI & KSStrain by Child’s Disability Type, HI & KS
HRSA. 2005/06 National Survey of Children with Special Health Care Needs. Data Resource Center.
Our Vision – Healthy Kansans Living in Safe and Sustainable EnvironmentsOur Vision – Healthy Kansans Living in Safe and Sustainable Environments
Summary Financial StrainSummary 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
Our Vision – Healthy Kansans Living in Safe and Sustainable EnvironmentsOur Vision – Healthy Kansans Living in Safe and Sustainable Environments
Presentation Road MapPresentation Road Map
• Children screened early and continuously for Children screened early and continuously for special care needsspecial 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 familiesServices are organized for easy use by families– Receive coordinated, on-going, comprehensive care within Receive coordinated, on-going, comprehensive care within
medical homemedical home– Have sufficient insurance to pay for needed servicesHave sufficient insurance to pay for needed services
– Youth receive necessary services to successfully manage Youth receive necessary services to successfully manage their care, work, and live independently as adultstheir care, work, and live independently as adults
Our Vision – Healthy Kansans Living in Safe and Sustainable EnvironmentsOur Vision – Healthy Kansans Living in Safe and Sustainable Environments
National CSHCN Transition DefinitionNational 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
Our Vision – Healthy Kansans Living in Safe and Sustainable EnvironmentsOur Vision – Healthy Kansans Living in Safe and Sustainable Environments
Percent of YSHCN Not Successfully Percent of YSHCN Not Successfully Transitioning by Race, KS & MOTransitioning by Race, KS & MO
HRSA. 2005/06 National Survey of Children with Special Health Care Needs. Data Resource Center.
Our Vision – Healthy Kansans Living in Safe and Sustainable EnvironmentsOur Vision – Healthy Kansans Living in Safe and Sustainable Environments
Percent of YSHCN Not Successfully Percent of YSHCN Not Successfully Transitioning by Family Structure, KS & MOTransitioning by Family Structure, KS & MO
HRSA. 2005/06 National Survey of Children with Special Health Care Needs. Data Resource Center.
Our Vision – Healthy Kansans Living in Safe and Sustainable EnvironmentsOur Vision – Healthy Kansans Living in Safe and Sustainable Environments
Percent of YSHCN Not Successfully Percent of YSHCN Not Successfully Transitioning by FPL, KS & MOTransitioning by FPL, KS & MO
HRSA. 2005/06 National Survey of Children with Special Health Care Needs. Data Resource Center.
Our Vision – Healthy Kansans Living in Safe and Sustainable EnvironmentsOur Vision – Healthy Kansans Living in Safe and Sustainable Environments
Percent of YSHCN Not Successfully Percent of YSHCN Not Successfully Transitioning by Insurance Type, KS & MOTransitioning by Insurance Type, KS & MO
HRSA. 2005/06 National Survey of Children with Special Health Care Needs. Data Resource Center.
Our Vision – Healthy Kansans Living in Safe and Sustainable EnvironmentsOur Vision – Healthy Kansans Living in Safe and Sustainable Environments
Percent of YSHCN Not Successfully Percent of YSHCN Not Successfully Transitioning by Disability Type, KS & MOTransitioning by Disability Type, KS & MO
HRSA. 2005/06 National Survey of Children with Special Health Care Needs. Data Resource Center.
Our Vision – Healthy Kansans Living in Safe and Sustainable EnvironmentsOur Vision – Healthy Kansans Living in Safe and Sustainable Environments
ACS Education Definitions ACS Education Definitions 18-34 year olds 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
Our Vision – Healthy Kansans Living in Safe and Sustainable EnvironmentsOur Vision – Healthy Kansans Living in Safe and Sustainable Environments
Percent of 18-34 year olds Percent of 18-34 year olds Enrolled in Higher EducationEnrolled in Higher Education
Total
Total
En
rollmen
tE
nrollm
ent
En
rollmen
t E
nrollm
ent
Typ
eT
ype
US Census Bureau. American Community Survey 2005-2007. Tables B18011 and B18015
15.9
7.1
13
15.5
6.6
17.3
0 5 10 15 20
mobility
College Or Graduate
Below College
% of Population with Disability
USKS
Our Vision – Healthy Kansans Living in Safe and Sustainable EnvironmentsOur Vision – Healthy Kansans Living in Safe and Sustainable Environments
7.65.8
15.815.2
8.913.3
20.720.0
28.5 26.722.7
17.5
05
1015202530
se
ns
ory
ph
ys
ica
l
me
nta
l
se
lf-ca
re
mo
bility
em
plo
me
nt
% o
f P
op
ula
tio
n
wit
h D
isa
bil
ity
Enrolled
Attended orGraduated
DisabilitiesDisabilities LimitationsUS Census Bureau. American Community Survey 2005-2007. Tables B18012 -- B18016
Percent of KS 18-34 year olds SHCN Percent of KS 18-34 year olds SHCN Enrolled/attended College by Disability TypeEnrolled/attended College by Disability Type
emp
loymen
t
Our Vision – Healthy Kansans Living in Safe and Sustainable EnvironmentsOur Vision – Healthy Kansans Living in Safe and Sustainable Environments
ACS Employment DefinitionACS 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.
Our Vision – Healthy Kansans Living in Safe and Sustainable EnvironmentsOur Vision – Healthy Kansans Living in Safe and Sustainable Environments
Percent of KS 16-34 years olds Employed Percent of KS 16-34 years olds Employed by Disability Status and Race/Ethnicityby Disability Status and Race/Ethnicity
RacesRaces Ethnicityblack
30
475244
5340
4652
68 656273 71 69 7074
0
20
40
60
80
White
Black
Native
asian
other
multi-racial
non-hispanic
hispanic
% P
opul
atio
n w
ith
disa
bilit
y st
atus
AnyDisabilityNoDisability
white
black
native
US Census Bureau. American Community Survey 2005-2007. Tables B18020A-18020F
Our Vision – Healthy Kansans Living in Safe and Sustainable EnvironmentsOur Vision – Healthy Kansans Living in Safe and Sustainable Environments
44.9
25.3
13.2
61.0
31.0
6.1
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DisabilitiesDisabilities LimitationsUS Census Bureau. American Community Survey 2005-2007. Tables B18021 -18026
Percent of KS 16-34 year olds SHCN Percent of KS 16-34 year olds SHCN Employed by Disability Type Employed by Disability Type
employm
ent
Our Vision – Healthy Kansans Living in Safe and Sustainable EnvironmentsOur Vision – Healthy Kansans Living in Safe and Sustainable Environments
Transition SummaryTransition Summary
• Increase transitioning difficulties in– Minorities– Single mother families– Lower incomes– Publicly insured– Functional/mobility
• Physical has higher education but less are employed
Our Vision – Healthy Kansans Living in Safe and Sustainable EnvironmentsOur Vision – Healthy Kansans Living in Safe and Sustainable Environments
CYSHCN Survey Information TransitioningCYSHCN 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
Our Vision – Healthy Kansans Living in Safe and Sustainable EnvironmentsOur Vision – Healthy Kansans Living in Safe and Sustainable Environments
Questions?Questions?
Garry Kelley, MS
MCH Epidemiologist
Our Vision – Healthy Kansans Living in Safe and Sustainable EnvironmentsOur Vision – Healthy Kansans Living in Safe and Sustainable Environments
ACS Disability DefinitionACS 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’
Our Vision – Healthy Kansans Living in Safe and Sustainable EnvironmentsOur Vision – Healthy Kansans Living in Safe and Sustainable Environments
National CSHCN Disability DefinitionNational 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
Our Vision – Healthy Kansans Living in Safe and Sustainable EnvironmentsOur Vision – Healthy Kansans Living in Safe and Sustainable Environments
National CSHCN Severity DefinitionNational 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
Our Vision – Healthy Kansans Living in Safe and Sustainable EnvironmentsOur Vision – Healthy Kansans Living in Safe and Sustainable Environments
ACS Poverty DefinitionACS 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
Our Vision – Healthy Kansans Living in Safe and Sustainable EnvironmentsOur Vision – Healthy Kansans Living in Safe and Sustainable Environments
National CSCHN and NCHS National CSCHN and NCHS Disability Type DefinitionsDisability 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
Our Vision – Healthy Kansans Living in Safe and Sustainable EnvironmentsOur Vision – Healthy Kansans Living in Safe and Sustainable Environments
ACS Disability Type Definitions ACS Disability Type Definitions II
• 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?
Our Vision – Healthy Kansans Living in Safe and Sustainable EnvironmentsOur Vision – Healthy Kansans Living in Safe and Sustainable Environments
ACS Disability Type Definitions ACS Disability Type Definitions IIII• 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?
Our Vision – Healthy Kansans Living in Safe and Sustainable EnvironmentsOur Vision – Healthy Kansans Living in Safe and Sustainable Environments
ACS Limitations DefinitionsACS 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?