maternal and child health brief #4 · 4 maternal and child health brief #4: percent of families...

OVERV I EW

This Maternal and Child Health (MCH) Brief

summarizes the latest data regarding family

perceptions regarding the accessibility of the

community-based services system for children

with special health care needs. The brief also

summarizes statewide initiatives in Delaware

that support this performance measure.

I ND I CATORS FOR CH I LDREN W I TH SPEC I A L HEALTH CARE NEEDS AND THE I R F AM I L I ES

Delaware tracks a number of indicators specific

to children with special health care needs

and their families as part of its annual Maternal

and Child Health Block Grant application.

These indicators are:

• The percent of children with special health

care needs age 0-18 years whose families

partner in decision making at all levels and

are satisfied with the service they receive.


care needs age 0-18 who receive

coordinated, ongoing, comprehensive care

within a medical home.


care needs age 0-18 whose families have

adequate private and/or public insurance to

pay for the services they need.

(continued on page 2)

MATERNAL AND CH I LD HEALTH BR I E F #4 :C H I L D R E N W I T H S P E C I A L H E A L T H C A R E N E E D S :

T H E C O M M U N I T Y - B A S E D S E R V I C E S S Y S T E M

D E C E M B E R 2 0 1 2

MATERNAL AND CH I LD HEALTH BR I E F #4 : 1

MATERNAL AND CH I LD HEALTH BR I E F #4 :2

INDICATORS FOR CHILDREN (CONTINUED)

• Percent of children with special health care needs

age 0 – 18 whose families report the community

based service systems are organized so they can

use them easily.

• The percentage of youth with special health

needs who received the services necessary

to make transitions to all aspects of adult

life, including adult health care, work, and

independence.

• The percent of health indicators that improve

(child health, emotional and mental health,

health care access and quality, and family health)

for families and children with special health care

needs in Delaware compared to health indicators

among children without special health care

needs.

This brief focuses on the fourth of these measures,

families’ perceptions of the organization of

community-based services and ease of use of these

services.

Major challenges have been identified that confront

families in accessing coordinated health and related

services for their children with special health care

needs. Differing eligibility criteria, duplication and

gaps in services, inflexible funding streams and poor

coordination among service agencies are concerns in

Delaware, as well as across most states. Addressing

these issues will lead to more efficient use of public

funds and reduced family stress. i

2009/2010 NATIONAL SURVEY OF CHILDREN WITH SPECIAL HEALTH CARE NEEDSThe National Survey of Children with Special

Health Care Needs (NS-CSCHN) measures ease

of access and organization of the service system

based on eligibility, availability of services

within a geographic area, waiting lists or delays

in securing an appointment for services, issues

related to the cost of services, family perception

of access to needed information, and family

frustration with the services system. To meet the

outcome of families reporting the community-

based service systems are organized so they can

use them easily, families must report having no

difficulties or delays in getting services, and be

only sometimes or never frustrated in efforts to

get services for their children with special health

care needs as reported on the NS-CSHCN.ii

continued on page 3


Percent of Families Reporting Community Based Services Are Easy to Use, by Age Group of Child in Delaware

2009/2010 NS-CSHCN

Percent of Families Reporting Community Based Services Are Easy to Use, Delaware and the U.S.

2009/2010 NS-CSHCN

67.3

63.7

74.9

58 60 62 64 66 68 70 72 74 76

0 ‐ 5 yrs old

6 ‐ 11 yrs old

12 ‐ 17 yrs old

Percent

Percent of Families Reporting Community Based Services Are Easy to Use,

by Age Group of Child in Delaware2009/2010 NS‐CSHCN

2009/2010 SURVEY (CONTINUED)

As seen in Figure 1, Delaware is similar to the

nation in the percentage of families reporting the

community-based service systems for children

with special health care needs is organized in a

manner which makes them easy to use (69% in

Delaware vs 65.1% nationwide, n.s.). In Delaware,

there were no significant differences by child sex

or race/ethnicity. However, families with children

aged 12-17 were significantly more likely to report

meeting the objective than families with children

aged 6-11 years (see Figure 2).

Other notable differences in terms of factors

associated with families’ perceptions of ease

continued on page 4

6965.1

3134.9

0

10

20

30

40

50

60

70

80

Delaware United States

Percen

tPercent of Families Reporting

Community Based Services Are Easy to Use, Delaware and the U.S.2009/2010 NS‐CSHCN

Achieved

Not Achieved

FIG.1

FIG.2


Percent of Families Reporting Community Based Services Are Easy to Use, by the Presence of an Emotional, Behavioral or Developmental Issue in Delaware

2009/2010 NS-CSHCN

53.6

76.4

0 20 40 60 80 100

One or more emotional, behavioral or developmental issues

No qualifying emotional, behavioral or developmental issues

Percent


by the Presence of an Emotional, Behavioral or Developmental Issue in Delaware2009/2010 NS‐CSHCN

2009/2010 SURVEY (CONTINUED)

of use of community services were: perceived

adequacy of current insurance; the presence of an

emotional, behavioral or developmental issue for

the child; and the intensity of services required

for the condition. As seen in Figure 3, 77.2% of

families with adequate health insurance reported

the community-based system of services was easy

to use, compared to 49.2% of families without

adequate health insurance.

Families with children with no emotional,

behavioral or development issues co-occurring

with their special health care needs were more

likely to report that community-based services

were easy to use than families with children

with emotional, behavioral or developmental

issues as noted in Figure 4 (76.4% vs. 53.6%,

respectively).

Though there were no significant differences

between families with children who had

functional limitations, families with children who

required prescriptions and additional services,

and families with children who required more

than routine services, there was a significant

difference between these three groups and

families with children who could be managed

with prescriptions only in terms of perceived

ease of use of community services. (See Figure

5, 57.1%, 57.9%, 61.4%, respectively for the first

three groups vs. 82.1% for families with children

managed with prescriptions only).

49.2

77.2

0 10 20 30 40 50 60 70 80 90

Current insurance is not adequate

Current insurance is adequate

Percent


by Adequacy of Insurance2009/2010 NS‐CSHCN

FIG.3

Percent of Families Reporting Community Based Services Are Easy to Use, by Adequacy of Insurance

2009/2010 NS-CSHCN

FIG.4


CHILDREN WITH SPECIAL HEALTH CARE NEEDS AND MATERNAL AND CHILD HEALTH PROGRAMSThe Title V Maternal and Child Health Block Grant

Program requires states to set aside at least 30%

of its federal funds for Children with Special Health

Care Needs. In Delaware, a large portion of this set

aside funding is allocated to Family SHADE.

Family SHADE is an alliance of 40+ organizations

and agencies committed to working together

to improve the quality of life of children with

special health care needs by improving access

to information and services in Delaware. Family

SHADE was formed in response to a needs

assessment of families and service providers

conducted by Delaware’s Maternal Child Health

Bureau. The results of the needs assessment

indicated the need to strengthen, expand, and

coordinate a system of family supports that

are easily accessible, avoid duplication,

use resources efficiently, and prevent

gaps in services to families of CSHCN

throughout Delaware. To address these

recommendations, organizations, agencies

and family members came together to form

Family SHADE, an “umbrella” organization

that is specifically dedicated to sharing

information, resources and expertise to

benefit and support families of CSHCN.

Percent of Families Reporting Community Based Services Are Easy to Use, by Level of Services Needed in

Delaware 2009/2010 NS-CSHCN

82.1

61.4

57.9

57.1

0 20 40 60 80 100

Managed by Rx meds

Above routine need/use of services

Rx meds AND service use

Functional limitations

Percent

Percent of Families Reporting Community Based Services Are Easy to Use, by Level of Services Needed in Delaware

2009‐2010 NS‐CSHCN

FIG.5


R E F ERENCEi HRSA, Title V Maternal and Child Health Block Grant Guidance

ii 2009/2010 National Survey, retrieved electronically on November 15, 2012 from www.childhealthdata.org


“Family SHADE was formed in response

to a needs assessment of families

and service providers conducted by

Delaware’s Maternal Child Health Bureau.

The results of the needs assessment

indicated the need to strengthen, expand,

and coordinate a system of family

supports that are easily accessible, avoid

duplication, use resources efficiently, and

prevent gaps in services to families of

CSHCN throughout Delaware.”

© 2 0 1 3 A l l R i g h t s R e s e r v e d

D E L A W A R E D I V I S I O N O F P U B L I C H E A L T HM A T E R N A L A N D C H I L D H E A L T H P R O G R A M S

Jesse Cooper Building

417 Federal Street Dover, DE 19901

(302) 744-4551

http://www.dhss.delaware.gov/dhss/dph/chca/dphmchhome.html

Division of Public Health

Center for Family Health Research and Epidemiology

DELAWARE HEALTH AND SOCIAL SERVICES

maternal and child health brief #4 · 4 maternal and child health brief #4: percent of families...

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