# Presentation: 781167

## The 2005-2006 National Survey of Children with Special Health Care Needs

***Your Data... Your Story***

**The 2005-2006 National Survey of Children with Special Health Care Needs**
***What’s the same, What’s Different, What’s New and How to Get the Data***

- www.childhealthdata.org

**Presented by:**
**Christina Bethell, PhD, MBA, MPH**
**The Child and Adolescent Health Measurement Initiative**

**Notes:**
Renee: 
Welcome to the Data Resource Center’s first audioconference, Using the Data Resource Center for State-level Indicators of Health and Well-being: Your Data, Your Story.   We hope that this session will give you a useful introduction to a rich resource for information on the health and well-being of children and families in your states.
Before we begin, a few technical details: you can follow along with the slide presentation using the Powerpoint file we sent you.  The phone lines have all  been muted, so you don’t have to worry about background noise.  During the question and answer period we will open up the lines for questions; if you want to get in the queue, just press (??). 

## Goals and Review of Handouts

**Goals and Review of Handouts**

- Recap of the NS-CSHCN
- Highlight what is the same as in 2001
- Highlight what changed from 2001
- Highlight what’s new in the 2005-2006 survey
- Summarize when and how to get the data for the 2005-2006 NS-CSHCN and other tidbits!

## Conducted for the first time during 2000 – 2001
Screening method identifies CSHCN according to MCHB definition—methods differences from NSCH expected to lead to lower rates of identification on the NS-CSHCN.
Survey introduction
Administration of the CSHCN Screener
Order of screener items and items preceding the screener
Sampling and weighting conducted to allow state-level estimates
Was repeated in 2005-06 with some revisions & additional items and a higher number of CYSHCN receiving the full interview (850 per state)

- Screening method identifies CSHCN according to MCHB definition—methods differences from NSCH expected to lead to lower rates of identification on the NS-CSHCN.
**Survey introduction**
**Administration of the CSHCN Screener**
**Order of screener items and items preceding the screener**
- Sampling and weighting conducted to allow state-level estimates
- Was repeated in 2005-06 with some revisions & additional items and a higher number of CYSHCN receiving the full interview (850 per state)

**Recap of the National Survey of Children with Special Health Care Needs ****(NS-CSHCN)**

## National Survey of CSHCN

## Random sampling: 

**Random sampling:**** **
** ****allows certain characteristics to be estimated  with precision **
** ****larger sample sizes achieve more precision.**** **

## Three data files requiring integration
Screener file – includes information for over 350,000 children and youth on CYSHCN status and demographic characteristics
Household file – household characteristics
Interview File – full survey administered to one CYSHCN in a household for a total of 850 CYSHCN per state (target)

**Screener file** – includes information for over 350,000 children and youth on CYSHCN status and demographic characteristics
**Household file** – household characteristics
**Interview File – **full survey administered to one CYSHCN in a household for a total of 850 CYSHCN per state (target)

**Recap of the National Survey of Children with Special Health Care Needs ****(NS-CSHCN)**

## What Kind of Information was Collected?

Child HEALTH AND FUNCTIONAL STATUS
Child HEALTH INSURANCE STATUS and adequacy of coverage
ACCESS to HEALTH CARE — amounts and types of health care services and unmet needs 
CARE COORDINATION
FAMILY-CENTEREDNESS of child’s health care
IMPACT of child’s health on FAMILY employment and finances

**Child **HEALTH AND FUNCTIONAL STATUS
**Child** HEALTH INSURANCE STATUS **and adequacy of coverage**
- ACCESS to HEALTH CARE — **amounts and types of health care services and unmet needs **
- CARE COORDINATION
- FAMILY-CENTEREDNESS **of child’s health care**
- IMPACT **of child’s health** on FAMILY **employment and finances**

**Notes:**
Christy:

## 2001 vs. 2005/06 Comparability Impacted

_**2001 vs. 2005/06 Comparability Not Impacted**_
**Outcome #1:** Families partners in decision-making/satisfied with services
**Outcome #3:** Adequate insurance
_**2001 vs. 2005/06**__ __**Comparability Impacted**_
**Outcome #2:** Medical Home (four of five components had significant changes in survey items used).
**Outcome #5:** Community-based services organized so families can use them easily.
**Outcome #6:** Transition to Adulthood

**Notes:**
Brett:

## 2001 vs. 2005/06 Comparability Not Substantially Impacted

_**2001 vs. 2005/06**_ **Comparability Not Substantially Impacted**
**Indicator #1:** % with health conditions consistently and often greatly affecting daily activities.
**Indicator #2:** % school-age children and youth with 11 or more days of school absences due to illness
**Indicator #3:** % with any gap in insurance
**Indicator #4:** % currently uninsured
**Indicator #5:** % currently insured without adequate insurance
**Indicator #6:** % with unmet needs for  range of specific services
**Indicator #11:  **% with family-centered care
**Indicator #13:**  % with families experiencing financial problems due to child’s health
**Indicator #14: **% with families spending 11+ hours per wk providing/coordinating care for child.

**Notes:**
Brett:

## 2001 vs. 2005/06 Comparability Substantially Impacted

_**2001 vs. 2005/06**_ **Comparability Substantially Impacted**
**Indicator #7b:**  % whose families with unmet family support services (respite, genetic counseling or mental health services)
**Indicator #8:** % problems getting needed referral(s).
**Indicator #9:**  % without usual source of care or who rely on the ER
**Indicator #10:** % without a personal doctor or nurse.
**Indicator #12:** % with families paying more then $1000 for child’s medical expenses.
**Indicator #15:** % with family members who cut back or stopped working due to child’s health needs.

**Notes:**
Brett:

## Health and functioning 

**Health and functioning **
- 1.  18 items on specific physical, social and communication functioning issues child experiences
- 2. 18 items on the name of specific health conditions or problems child currently has.
**Health care access and utilization **
- 1. Number of ER visits
- 2. Problems getting  referrals for doctors or other services.
**Other Topics**
- 1.  Primary household language
- 2.  Need and get interpreter
- Family composition
**There are many other “new” items. However, these are in topical areas also represented in 2001 survey. Go to www.childhealthdata.org for more information.*

## Public Release in Fall, 2007

- Will have live on the Data Resource Center Website (_[www.childhealthdata.org](http://www.childhealthdata.org/)__) within 2-3 months of public release (if not sooner)_
- Technical assistance to consider use of the new data possible to obtain right now!
- Give us your input NOW on how to make the data most valuable for you!

## Encourage use for each step of the needs assessment process:

- Identify needs
- Assess capacity
- Prioritize Needs
- Identify promising practices (compare to other states)

##  providing:

**Hands-on, User-Friendly Access to Data**
- National Survey of Children with Special Health Care Needs (NS-CSHCN)
- National Survey of Children’s Health (NSCH)
**Resources and Information about Data**
- Examples of how other state and family leaders are using these data findings, background about the national surveys, resources about health of children

**Interactive Data Resource Center**
-  providing:

- _[www.childhealthdata.org](http://www.childhealthdata.org/)_

**Notes:**
Brett:

## Slide 16

**Notes:**
 Christy:
Slide 31 illustrates your starting point for the first of these options.  Here, you simply click on the map of the US.  Slide 32 illustrates what you get when you do this. 

##        Three Main Types of Data Output

**Multiple Indicator State Profile Tables**
**Single Indicator “All States” Comparison Tables**
**Data Graphs and Tables for Every Indicator**
- Comparing an indicator across any two geographic areas and
- Comparing indicators across subgroups of children by age, race, insurance status, income, family structure, health status, etc.

**Notes:**
Christy:
Slide 23 lists the three main types of data output you can obtain from the DRC. First, you can obtain nicely formatted, one page, “at-a-glance” tables that compare your state’s indicator findings to the nation on multiple indicators at the same time.  Alternatively, you can obtain similar “at-a-glance” tables comparing all states at the same time on any single indicator—for all children or for a specific subgroup of children according to, for example, their socio-demographic or health characteristics, like their age, race/ethnicity, household income, insurance status, special health care needs status and so on.  Of course, the bread and butter of the DRC is the third data output option whereby you can interactively search for and obtain charts and tabular displays on any number of indicators and comparing your state to any other state, region or the nation for all or subgroups of children.  The next five slides provide a visual illustration of these different types of data output available for you to obtain, download, save and include in your own presentations or reports. 

## Top MCH Topics Named in Most Recent Needs Assessments With CSHCN and Non-CSHCN Data Available on the DRC

**Top MCH Topics Named in Most Recent Needs Assessments With CSHCN and Non-CSHCN Data Available on the DRC**
- Disparities – 42 States or 82.4%
- Access to Care – 40 States or 78.4%
- Obesity  - 35 States or 68.6%
- Dental Care – 31 states or 60.8%
- Mental Health – 26 States or 51.0%
- Injury Prevention – 25 States or 49.0%
- Medical Home – 23 States or 45.1%

## Identifying/documenting needs

- How many children in your state have unmet needs?
- How does data support what you’re hearing from the field (providers, families, other agencies)?
**Building Partnerships**
- What partners could use this data: Public programs, health plans, hospitals, providers, community groups, faith based organizations?
- How can you share data to support common efforts, improve care?

*Kristin Grimm, Spitfire Strategies*

**Notes:**
Renee: 

Can you give us some general examples of how this information can be used? 

Brett:

## Grant Writing 

- Key policy issues for your state
- Programs needs for information
- Data to educate about child health needs
**Advocacy**
- Pressure points in program budgets, priorities
- Effective methods to present your case
- Use of data in Fact Sheets, testimony, the media, to strengthen family stories
**Grant Writing**** **
- Use of data to strengthen your proposal

*Kristin Grimm, Spitfire Strategies*

**Notes:**
Brett:

## Slide 21

**Notes:**
Christy:
Once you call up the US map you select the state you want to profile. Here we select California and Slide 33 shows the multiple-indicator state profile provided using data from the NS-CSHCN.   

## Example of Multiple Indicator State Profile

**Notes:**
Christy:
Here is an example of a state profile comparing California to the Nation on numerous indicators at the same time.  

## Example of Single Indicator “All State” Comparison Table (Option to Sort by Rank)

**Notes:**
Christy:
Slide 25 illustrates a table comparing and ranking all states on the proportion of children age 10-17 who are overweight and at risk of overweight, etc.  Before printing or downloading you have the option to sort or rank states according to any of the indicator response options – by proportion overweight, for example, or by proportion with normal weight. You can also create all-state comparison tables for subgroups of children, say for children from different income groups. 

## Example of Single Indicator Data Table Comparing Two Geographic Areas

**Notes:**
Christy:
Slides 26-28 illustrate the tables and charts you can obtain for any single indicator. You’ll see that the indicator score as well as the margin of error and number of children represented is provided for your use.

## Example of Single Indicator Graph Comparing Two Geographic Areas

**Notes:**
Christy:
On Slide 27 you see an illustration of the drop down menu allowing you to stratify findings on any indicator by specific subgroups of children and youth, according to their age, race/ethnicity, household income, sex, insurance type, health status and so on.

## Example of Single Indicator Graph Comparing Two Geographic Areas and Three Subgroups of Children (by Type of Health Insurance)

**Notes:**
Christy:
And on Slide 28 you see the chart produced when the indicator assessing the proportion of children in Texas who have a personal doctor or nurse is stratified by the type of insurance a child has – all compared to the nation.  Of note, is the observation that children with no health insurance are about four times more likely to lack a personal doctor or nurse compared to children with private health insurance. This is an example of just one of thousands of charts you can easily produce and download using the DRC.