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

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


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


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


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


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.



• Children screened early and continuously Children screened early and continuously for special care needsfor special care needs


• 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




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


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.


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


Percent of CYSHCN by Level of Percent of CYSHCN by Level of Impairment and Race, KS & USImpairment and Race, KS & US


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


Percent of KS CYSHCN Percent of KS CYSHCN by Level of Impairment and FPL by Level of Impairment and FPL


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


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


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


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


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


% o

f C

hild

ren

wit

h D

isab

ilit

ies


20

16

19

1514

24

8

13

20

9

1618

0

5

10

15

20

25


% 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



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


% o

f C

hild

ren

wit

h D

isa

bili

tie

s

Private only

Public only



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





• 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




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?


Percent of CYSHCN Impact on Percent of CYSHCN Impact on Families’ Employment by FPL, IA & KSFamilies’ Employment by FPL, IA & KS



Percent CYSHCN Impact Families’ Percent CYSHCN Impact Families’ Employment by Disability Type, IA & KSEmployment by Disability Type, IA & KS



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).





• 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



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


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


% 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



% CYSHCN with No Medical % CYSHCN with No Medical Home by Insurance Type, IA & KS Home by Insurance Type, IA & KS



% CYSHCN with No Medical % CYSHCN with No Medical Home by Disability Type, IA & KS Home by Disability Type, IA & KS



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


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)

*

*

*

*


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)


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).



• Children screened early and continuously for Children screened early and continuously for special care needsspecial care needs


• 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



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?


Percent of CYSHCN with Percent of CYSHCN with Inadequate Insurance by FPL, KS & MEInadequate Insurance by FPL, KS & ME



Percent of CYSHCN with Inadequate Percent of CYSHCN with Inadequate Insurance by Insurance Type, KS & RIInsurance by Insurance Type, KS & RI



Percent of Children with Inadequate Percent of Children with Inadequate Insurance by Disability Type, KS & MEInsurance by Disability Type, KS & ME



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


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



Percent of Families with Percent of Families with Financial Strain by Child’s GenderFinancial Strain by Child’s Gender



Percent of Families with Percent of Families with Financial Strain by FPLFinancial Strain by FPL



Percent of CYSHCN Families with Percent of CYSHCN Families with Financial Strain by Insurance Type, HI & Financial Strain by Insurance Type, HI &

KSKS



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



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



• 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


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


Percent of YSHCN Not Successfully Percent of YSHCN Not Successfully Transitioning by Race, KS & MOTransitioning by Race, KS & MO



Percent of YSHCN Not Successfully Percent of YSHCN Not Successfully Transitioning by Family Structure, KS & MOTransitioning by Family Structure, KS & MO



Percent of YSHCN Not Successfully Percent of YSHCN Not Successfully Transitioning by FPL, KS & MOTransitioning by FPL, KS & MO



Percent of YSHCN Not Successfully Percent of YSHCN Not Successfully Transitioning by Insurance Type, KS & MOTransitioning by Insurance Type, KS & MO



Percent of YSHCN Not Successfully Percent of YSHCN Not Successfully Transitioning by Disability Type, KS & MOTransitioning by Disability Type, KS & MO



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


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


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


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.


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


44.9

25.3

13.2

61.0

31.0

6.1

010203040506070

sensory

physical

mental

self-care

mobility

emplom

ent

% o

f D

isa

ble

d

Po

pu

lati

on

Em

plo

ye

d

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


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


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


Questions?Questions?

Garry Kelley, MS

MCH Epidemiologist


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’


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


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


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


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


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?


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?


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?

Documents

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