AMCHP 2005 ANNUAL CONFERENCE
DELIVERING RESULTS, IMPROVING PREGNANCY & BIRTH
February 19-23, 2005
DANA ZIVE: Well, it sound like most people here, have already utilized information from the National Survey of Children with Special Healthcare Needs. So I’m just going to give a little bit of an introduction to how that survey was conducted and who the population was and then a little bit also about the new national survey, which the National Survey of Children’s Health. The Data Resource Center for the National Survey of Children’s Health should be up and running, we’re hoping by the end of April, which should in time, hopefully to help you with some of your Block Grant information. So the National Survey of Children with Special Healthcare Needs was conducted for the first time during 2000 and 2001. It’s currently in the field again for data that should be released in 2006, so we’ll be able to have really nice follow up data. It was administered using the Slate’s Mechanism.
You may actually have heard it mostly referred to as the Slate Survey. However that just is the mechanism. It’s a state and local area integrated telephone survey using a random digit dial. It was sponsored, of course, by the Bureau. Thank you. And the National Center for Health Statistics at the CDC over it saw all of the sampling in administration as well as a lot of the follow up data. You may also have seen the National Survey of Children with Special Healthcare Needs chart book. Does anyone have that in their state? Okay. That is available and I would also, really recommend that you go on to MCHB website and you can order free copies of the NSCHCN chart book, if you’re looking for information specifically about your state and the nation.
The purpose of the National Survey of Children with Special Healthcare Needs, as Nora mentioned, was to provide some more accurate national and state estimates for the numbers of children with special healthcare needs in the population. And to provide what are essentially baseline measures, so that these future surveys would have something to compare to and so that you could really be able to measure change and progress that you have made in your state about serving the needs of children with special health care needs and their families. Specifically, to provide information for the Title V Block Grant needs assessment that you’ll be working on, that’s required every five years as you’re coming into a new needs assessment cycle, it’s always important to have the most current data that you can. And both of these national surveys hopefully do something to help you with that.
It also will help you look at state level information about insurance status on all children, as well as to provide information about children with special health care needs and their families to help get policy makers, advocates, and researchers. This is a little bit of information about the sampling that was used for the National Survey of Children with Special Healthcare Needs. There actually were three levels of sampling, 372,000 children were identified in nearly 200,000 households. So all of those households were called and it was identified whether or not there were children in the household. Then there was actually a screening process and we found that 323,000 children did not have special healthcare needs and nearly 50,000 did have special healthcare needs.
Of the group that were identified as having a special healthcare need, 750 children with special healthcare needs were identified in each state for a longer interview. And so there was a total of nearly 40,000 interviews completed of children with special healthcare needs. This was a really large representative sample of children with special healthcare needs across the nation. In depth information was collected on health and functional status, insurance status, type of insurance, access to care, including measurements of medical home and types of health services and need, coordination of care, family participation and family centeredness of child care and as well as the impact of the child’s health on the family. Now the National Survey of Children’s Health came along after the National Survey of Children’s Special Healthcare Needs was shown to be such a success and offered so much information. It also was sponsored by the Maternal Child Health Bureau and was started in 2003 where over 100,000 phone interviews were completed.
The goal was 2000 interviews per state and a total, there were 102,353 children represented in the National Survey of Children’s Health, making it the largest representative survey of children’s health ever completed and this is children zero through 17. The unique features of the National Survey of Children’s Health is that it gives a comprehensive detailed snapshot of not only the child and their health but the family and the neighborhood. These allow you to give a really clear indication of the child’s health and well being. Also it’s gone to sort of a very positive indicator route, looking at strengths of the family, relationships and behavior. Processes in the family, how often are families eating meals together or reading to young children, looking at household routines, are children getting enough sleep? It’s a very interesting and comprehensive survey.
Again, over 102,000 interviews were completed. The state with the fewest was Utah with 1,483. The states with the most were Louisiana and Ohio with just over 2,000. About half of the states participating had more than 2,000 surveys. The overall response rate was over half at about 55.3 percent, with the highest in South Dakota at 64.4 percent and 32 states were over this average rate of 55 percent. Again, looking briefly at the domains that were captured, were child level characteristics, family level influences and neighborhood and community influences all looking towards child outcomes. We’re in the process now, between the Bureau and advisory committees of identifying indicators that will be used from the National Survey of Children’s Health that should be useful to states as well as families.
This is an overview of the indicators. There’s eight separate categories. The survey itself is quite extensive. The first category is physical and dental health. There are 10 separate indicators within that category. The second is emotional, developmental, and mental health and child well being. The third category is health insurance coverage. This covers both insurance type and whether a child was covered at the time of the interview, as well as if they had any lapse in coverage during the previous year. Access to care and services including measurements of the medical home, oh actually sorry, that’s category five. It shows the health care system and medical home measurement. Six is child and youth activity and success in school, and seven, family and home activities, safety and well being, and finally neighborhood safety and support, identifying if neighborhoods are really supportive of child success.
These are the detailed indicators. I can run through these reasonably quickly. There’s several of them here: overall child health, healthy teeth, healthy weight, asthma impact, ADD impact, children who are hospitalized for asthma, the overall impact on the child and family of particular conditions, lost school days due to illness, and child injury. Secondly, emotional developmental mental health and well being, we have parent perceived emotional mental or behavioral problem, breast feeding, risk for developmental delay using the Peds Measures, parental concerns, whether or not families were asked about concerns by their doctor and received needed information. Problems that children had with either social competence or social behavior as well as parent concerns about child behavior. What you’re seeing in parentheses after these are the age groups that these indicators sort of pattern to.
The survey is actually broken up into three sections. There’s all children, there’s children zero to five, and then there’s children six to seventeen, which the six to seventeen group is broken into six to eleven and twelve to seventeen. Category three, insurance, currently insured, type of insurance and consistency. Category four, access to care and services, the preventive and dental health care. This is whether or not a child had a preventive or in dental healthcare visit within the last year, whether or not healthcare service needs have been met, mental healthcare access and needs, medical care, dental care, prescription medication, and emergency care. For healthcare system and medical home measures, there’s whether or not a child had a personal doctor or nurse. Whether there was good communication and cultural sensitivity within healthcare. Whether children got care quickly, had access to preventive care and specialized services, care coordination as well as an overall index of whether or not a child had a medical home.
Child and youth activities, success in school, outside of school activities, regular exercise using the CDC definition, whether or not a child worked for pay in the month prior to the survey. Whether or not children are in early childhood school, this also includes Head Start and Early Start. Whether children participated in religious activity as well and tier activities. Reading for pleasure, whether they were read to if they are not yet able to read. How many hours children watch television in a day, and how many children had repeated a grade. Again, these are family and home activities, whether a child had sufficient sleep, participated in family outings. Whether there was family parenting stress in the home, family conflict resolution. Whether children who are ages six to eleven spent time caring for themselves. Whether not parental care is any sort of non-parent childcare. Smoking in the household, working poor households, and number of shared meals.
This is the child supportive neighborhood section whether children are safe and whether parents have had to work to find available childcare. So, I’m going to give you a little bit of an introduction to some things that you can actually find on the Data Resource Center . We’re using as a model here the Children with Special Healthcare Needs Data Resource Center simply because the National Survey of Children’s Health Data Resource Center has not yet been completed. However, it will be very similar in its structure. So hopefully the information that you find here, you’ll be able to apply when looking information on the National Survey of Children’s Health. From the home page you’ll see a left hand navigation bar where this giant red arrow is and it indicates the main places that you can go on the site. If you are interested in finding out information about this survey or searching the survey data, you’re going to click on Survey Data.
From that you’ll be brought to this page and I thought it would be interesting to give you some information about where you can learn about the survey itself. Again, this is the National Survey of Children with Special Healthcare Needs. One of the, I think, most interesting features of the site is that it gives you to not only see the actual survey instrument, which I don’t know if you’ve seen that but it can be quite a bulky and sort of not the easiest to navigate sort of instrument. But we also give you sort of a condensed guide to topics and questions asked. This companion to the longer instrument can be really useful, I think, especially for a Block Grant. If it’s something that you are having other people work on certain measures, it’s the kind of thing that you could print out and give to staff and identify the questions that you really want to be able to search. It goes through section by section and identifies the individual pieces of the survey.
However, this is a five-page document as compared to a 70 or 75 page document of the actual survey. Finally, something that may be especially useful for you, not only for Block Grant but for any kind of presentations that you’re working on, are the state profiles that are available on the site. A state profile takes national and state level key indicators and compares your state’s data to the national data. If you click on state profiles, you’ll be brought to a map where you can select your state and we've selected Utah here and it will give you a one-page form that gives you child level and household level prevalence information, information broken out by some key stratifiers as well as information about sort of key indicators. You can print this out. You can also save this information. This also will be available for the National Survey of Children’s Health and can hopefully provide some sort of interesting information to motivate change within your state. Okay, I’m going to turn it back to Nora really quick for how you actually do a data search on the site.