Ninth Annual Maternal and Child Health Epidemiology Conference / December 10-12, 2003
Care Coordination and Special Needs Children:
Results from the National Survey
ROHINI SINGH: Thank you. Good morning. I’m going to tell you a little bit about the national survey of Children with Special Healthcare Needs and in particular, how we use the survey to look at care coordination in New Mexico. What is the National Survey of Children with Special Healthcare Needs? It is--it was administered for the first time in 2001 to every state in the United States. And it’s funded by the MCH Bureau of HRSA. It utilizes the slates mechanism, which is random digit dial. It’s screened to thousands of households in every states who obtain data for 750 Children with Special Healthcare Needs in every state. It addressed topics such as access to care, healthcare coverage, care coordination and medical home and then each state had customized questions that targeted state specific concerns like Medicaid and SCHP.
These were some of the screening questions that were used to determine whether a child had special healthcare needs during the survey. They asked about medical care, mental health or educational services that are needed more than other children of the same age. They asked about needing medication prescribed by a doctor. Being limited or prevented in anyway to do things that children of the same age can do. Needing special therapy like physical therapy or speech therapy. And having behavioral or emotional problems. And then the follow-up questions, if the answer was yes to these questions, was did the child receive all the care that they needed within each question and if the answer to that was no, then, why? So based on the results of 751 Children With Special Healthcare Needs in New Mexico, the prevalence of special healthcare needs was determined to be 11.43 percent. This is actually lower than the national prevalence from the national survey, which was 12.8 percent. Which was a little bit surprising. And as we go on to look at the demographics of the children in the survey, we might understand better why. This is to show you the socioeconomic, I guess, demographic of New Mexico children with special healthcare needs.
As you can see, over 50 percent of the children in this survey were below 200 percent of the federal poverty level and 15.8 percent were below 300 percent of the poverty level. To be eligible in New Mexico for Medicaid or SCHP, you need to be below 235 percent of the federal poverty level, but we were unable to obtain that data for confidentiality reasons. This is, again, a little bit more specific about percent of federal poverty level of New Mexico Children with Special Healthcare Needs. As for their actual specific insurance coverage, about 8 percent, 8 to 9 percent have no insurance, 45 percent reported that they had Medicaid or SCHP, five percent reported that they had Title V, and 52 percent reported having private insurance. This is the age breakdown of the children in this survey. As you can see it’s skewed towards the older population and there were two suggested reasons for that, the one being that special healthcare needs aren’t diagnosed until later in life and the second one was that given that this was a telephone random digit dial survey, parent’s may have been more reluctant to talk about younger children than they might’ve been to talk about their older kids. Moving on specifically to care coordination, in case there’s any confusion, a care coordinator is specifically defined as a professional who assists in coordinating care and makes sure that a child gets all the services that are needed and makes sure that these services fit together in a way that works. They’re also known as case managers. This was--these pictures, as you can see, were taken off the Operation Smile website because they exemplify the perfect case in care coordination with cleft lip and palette. Children with cleft lip and palette need to have an oral surgeon and a pediatrician and a psychologist and a speech therapist and everyone needs to work together to make sure that their treatment and their prescriptions are not hurting the child.
So why is care coordination important? The cost benefit to both providers of care and to families with children with special healthcare needs are incredible. They allow children with special healthcare needs to access services that they probably would not have known about. They facilitate transitions and care for adolescents and for children with special healthcare needs that are changing. And it’s also an important aspect of the medical home level. These quotes were taken from the American Academy of Pediatrics Statement on Care Coordination. Unlike many health conditions with which services are received within a single system of medical providers, children and youth with special healthcare needs often receive services from a varied network of programs and resources that include medical, educational, and social systems. Families who have children with complex needs and conditions still identify a lack of coordination and despaired service systems as major sources of stress. I’m sorry, that cut off a little. So in analyzing care coordination and health problems, in terms of these variables of care coordination, we looked at specific questions within the survey that address those issues. One of the questions in the survey is has the child’s health conditions caused financial problems for the family?
And for that question, 77 percent of the population said no, but then 21.86 percent of the population said yes, their child’s health condition did cause financial problems. Another question was have the child’s doctors or healthcare providers discussed having the child see a doctor who treats adults, so that addresses transition and 57 percent of the respondents said no. No, their doctor had never discussed transition. The next question was during the past 12 months was there any time when you or other family members needed professional care coordination among different healthcare providers and services that the child uses? And 15 percent of the respondents said yes, they needed care coordination. Thirty-nine percent also said that their professional care coordinator is part of their primary care physician’s office. And again, that’s only of people who are receiving care coordination. Forty percent said that their professional care coordinator works for a state agency, but not an MCH program and that was questionable because we weren’t sure what state agency they were working for if it wasn’t an MCH program and that indicates a problem with name recognition. And 41 percent of the respondents said that they received professional care coordination sometimes and 35 percent receive it always. These were some of the variables that care coordination in the survey was associated with; insurance coverage, needing additional income, time spent coordinating care, and receiving respite care and genetic counseling. Families that have insurance coverage are more likely to be receiving care coordination. That’s probably not a surprise to you all. As you can see from this graph, no one who was uninsured was receiving care coordination whereas 87 percent of children who did have insurance were receiving all the care coordination that they needed. Families that need additional income to cover their child’s expenses are less likely to be receiving care coordination.
So as you can see, 91 percent of families that said that they didn’t need additional income, were receiving care coordination. Families who think services are organized in a friendly manner are less likely to need professional care coordination. And that makes sense because people who understand the healthcare system are more likely to say that they don’t need it. The amount of time that a professional spends coordinating care is correlated with the family’s satisfaction with care coordination. Seventy-five percent of those who usually or always receive care coordination are satisfied and no one reported that they were dissatisfied with their care coordination if they were receiving it. Those who felt like a partner in care are more likely to have care coordination. And that addresses the medical home aspect of care coordination. Ninety-three percent of families who said that they felt like a partner in care were receiving all the care coordination that they needed and less than 60 percent of those who didn’t feel like a partner in care were receiving it. Families receiving needed genetic counseling and respite care are more likely to be receiving professional care coordination.
One of the most interesting things I found in the survey was that no one was receiving respite care unless they were also receiving professional care coordination. And 95 percent of those who were receiving genetic counseling were also receiving care coordination. So the take home messages of all this data, care coordination is effective when used. As you saw from the data, that when families did have care coordination, they received more of the services that they needed, like genetic counseling and respite care. Awareness of health services is of prime importance as you saw with the data about insurance coverage and being more satisfied with care coordination and saying that they needed care coordination more when they did not understand the healthcare system. Cultural competency in healthcare must be addressed in terms of the medical home model and primary care providers addressing care coordination with their clients. And so action on policy measures.
Have MCOs better advertise care coordination services, make sure that doctors are referring families to insurance companies for care coordination, address cultural competency with insurance payers and begin a campaign to increase knowledge of the Title V program in New Mexico. The limitations of the survey for us were that minority groups in New Mexico were under represented, especially the Native American population, probably due to the lack of telephone access. The lack of geographical data within the state, obviously the more rural areas would have different problems than the more urban ones. The income levels provided did not match up with the New Mexico income cut offs. As you saw earlier, we weren’t able to obtain the 235 percent federal poverty level cut off, (inaudible) bias and recall bias. Acknowledgements, this are the people who mentored me in my internship in New Mexico. And that’s it. Thank you for your attention.