a tool to promote developmental screening in young children...may 21, 2015  · - apgar score -...

KIDSNET

A tool to promote developmental screening

in young children

Ellen Amore, KIDSNET Manager

Rhode Island Department of Health

Northeast Regional Developmental Screening,

Referral and Response Conference

May 21, 2015

What is KIDSNET?

A Public Health Program –

not an electronic medical record

Integrated Child Health Information System

for maternal and child health programs

Facilitates the collection and appropriate

sharing of health data by authorized users

for the provision of timely and appropriate

preventive health services and follow up

KIDSNET Vision and Mission

Vision: All RI children receive appropriate

and timely preventive healthcare as a result of

access to and utilization of comprehensive

data on preventive health services by

authorized users.

Mission: KIDSNET facilitates the collection

and appropriate sharing of health data with

healthcare providers, parents, MCH programs

and other child service providers for the

provision of timely and appropriate preventive

health services and follow up.

KIDSNET Historical Context

Multiple Funding Streams

Overlapping Reporting requirements

Program culture

– Work in isolation

– Data as a proprietary possession- often unused

Budget pressure to “stick to core responsibilities”

KIDSNET Historical Context, cont‘d

Multiple programs with data/tracking responsibilities

All needed electronic information systems – not enough money to do solo systems right

Multiple programs tracking the same child

Families and primary care providers frustrated – competition for attention, redundant information collection, poor support

While some children received redundant services, others received none

Primary care model of public health but medical homes not always “in the loop”

KIDSNET Partner Programs

7 Universal:

Newborn

Developmental Risk

Newborn Bloodspot

Screening

Newborn Hearing

Assessment

Immunization

Childhood Lead

Poisoning

Vital Records

Child Outreach

10 Targeted:

WIC

Early

Intervention

Family Visiting

Birth Defects

CEDARR**

(information and referral

about services and

supports for children

enrolled in Medicaid

who have disabilities

and special needs)

Healthy Weight

Asthma

Early Childhood

Developmental

Screening

Foster Care*

Head Start **

* No Web access **in development

KIDSNET Users

Medical Care Providers

Maternal & Child Health Programs

Head Start and Child Care Agencies

Schools/Child Outreach

Home Visitors

Certified Lead Centers

Audiologists

Managed Care Organizations

Early Intervention

WIC

CEDARR Centers (information and referral about services and support options for children enrolled in Medicaid who have disabilities and special needs)

Births from January 1,1997 and later

Records initiated at birth or first

contact with KIDSNET Program

Hybrid data model (warehouse vs. complete)

Records are updated after services are

received from direct data entry or electronic

file submission from programs and providers

KIDSNET Data Capture

Developmental Screening

Newborn Developmental Risk

Birth to Three

Three to Five

Newborn Developmental Risk

Screening

IDEA (Individuals with Disabilities Act) “Child Find” requirement for states to seek out children at risk for developmental challenges and intervene early

The Rhode Island system is: 1) Developmental risk assessment followed by family visits 2) Screening of actual development, resources, supports and home environment 3) Referral to Early Intervention /other community resources

Who receives a developmental

risk assessment?

All infants born in Rhode Island maternity hospitals

Infants transferred to RI maternity hospitals if family resides in RI

Demographic information used in communication, reporting, data analysis

Language spoken in the home for written and oral communication with families

Insurance status

Prenatal care information

What data are collected?

What data are collected? Cont’d.

Newborn immunizations and hepatitis B status for tracking and follow-up

Alternate contact information to reach families in emergencies such as life threatening conditions identified through newborn screening

Community primary care provider for follow-up and care coordination

Breast feeding data

Known developmental risk factors

Developmental Risk Factors

• Child Characteristics - APGAR Score

- Gestational age

- Growth parameters

- Hearing screen

- HEP B risk

- Intensive care

• Parental

Characteristics - DCYF

- Chronic illness

- Developmental disabilities

- Mental health history

- Inadequate prenatal care

- Substance use

• Parental

Demographics - Caregiver’s education

- Caregiver’s marital status

- Maternal age

- # children living in home

• Established

Conditions - Chromosomal anomalies

- Developmental disability

- Genetic disorder

- Inborn error in

metabolism

- Infectious disease

- Sensory disorder

- Toxic exposure

Where do the data come from?

Delivery sheet

Birth certificate worksheet

Hospital data systems

Hospital staff

Child’s medical record if indicated

How are the data used?

Referral to Family Visiting

Assurance, tracking and follow-up for newborn blood spot, hearing and hepatitis

Policy development for newborn and early childhood programs

Analyzing key maternal and child health indicators and trends

Opens records in KIDSNET to assure and promote public health preventive services throughout childhood

Birth to Three

Data Sources

Family Visiting

Electronic Web-based Screening (Child Health and Development Interactive System-CHADIS, Patient Tools)

Electronic Web-based Screening

Primary Care provider subscribes to service

Parent completed tools (Survey of Well-Being in Young Children-SWYC, Ages and Stages Questionnaire - ASQ)

Recommendations for Physicians NEXT DUE

Developmental Screening: Recommended at 9 ,18, 30 months

DUE NOW

Autism Screening: Recommended 18 and 24 months

DUE FUTURE at 18 months

Click here for EPSDT schedule

Recommendations for Physicians NEXT DUE

Developmental Screening: Recommended at 9 ,18, 30 months

DUE NOW

Autism Screening: Recommended 18 and 24 months

Recommended Screening COMPLETE Future Screening at Provider Discretion

Click here for EPSDT schedule

Three to Five

Data Sources

Electronic Web-based Screening

Child Outreach (Child Find)

Beyond Age 5 – in development

Link to Early Childhood Education Data System at Dept. of Education

Standardized test scores

Other school outcomes

Aggregate data only to answer key policy questions

Who can access what data?

Access is granted on a need to know basis (role based access)

Programs, not KIDSNET, determine who can access their program data

Parents are informed at several time points and may “opt out” of display of their child’s information

Display is blocked if parental notification letter is returned as undeliverable

Signed consent is not obtained except at the program levels where the program is required or prefers to get signed consent

What About HIPAA?

The Privacy Rule expressly permits

public health information (PHI) to be

shared for specified public health

purposes….. Further, the Privacy Rule

permits covered entities to make

disclosures that are required by other

laws, including laws that require

disclosures for public health purposes

KIDSNET KIDSNET

State Law

The Confidentiality of Health Care

Communications and Information Act

permits release or transfer of confidential

health care information without consent

“between and among qualified personnel

and health care providers within the

health care system for purposes of

coordination of health care services….”

KIDSNET KIDSNET

Funding / Sustainability

Robert Wood Johnson Foundation - initial grant

for immunization registry “plus”

Categorical development is typically CDC or

HRSA grant

HRSA Title V Block Grant and State System

Development Initiative (SSDI)

State restricted receipt accounts (newborn

screening, immunization)

Better funded programs pay for maintenance

and improvements that benefit all programs

Sharing

Each state is unique

We are all in this together

Learning from each other – happy to share

(VT, Texas, Orange County CA, Maine)

Questions?

Ellen Amore

KIDSNET Manager

401.222.4601

ellen.amore@health.ri.gov

www.health.ri.gov