AMCHP 2006 ANNUAL CONFERENCE
EARLY CHILDHOOD: BUILDING THE FOUNDATION FOR LIFELONG HEALTH
March 4-8, 2006
MARIA NARDELLA: Well, good morning. I’m Maria Nardella with the Washington State Department of Health. And remember when you signed up for this session it said no charge? That’s where the heat factor comes in there. That was an additional that you did not opt for, so you get what you pay for. I have been working with MCH programs for many years in two different states, as a nutrition consultant for children with special healthcare needs first in Arizona and then in Washington state. And now I’m the manager of the children with special healthcare needs program. Oh, yeah, I forgot I had this cartoon. I don’t think you’ll fall asleep from this presentation but I am from the West Coast and it’s always a challenge at this conference where they feel that Washington, D.C. is the center of the universe. For those of you who also thinks it’s lots earlier this morning keep those eyes open.
These are the goals of the presentation. Basically we wanted to give you a flavor of what the differences are in some different states and then for you to think yourself of what your own state that you’re coming from is like. And I’d actually like to know how many of you are MCH staff from other states. Okay. And how many of you are family scholars for AMCHP? And how about family mentors from previous years? Okay, great. Thanks.
I was asked to just kind of show what our relationship is with AMCHP and we have four people from our state who are delegates for AMCHP. Our director is Jan Fleming, at the top there. Nancy Reid is the manager of the child and adolescents section. I’m children with special healthcare needs, with my buddy. And Leslie Carroll is the family consultant in our program. And actually, Leslie’s here. Why don’t you raise your hand? And as you hear this over the next couple of days if you see any of these people and you recognize them, stop and say hello. Tell them what a fabulous presentation this was. And they will give you a prize. So be looking for them, okay?
This is the mission of our Maternal and Child Health program, basically to promote a community that supports the health of women, infants, and children, and adolescents. The whole group. Just to give you a flavor of our organizational chart, within the Maternal and Child Health program we actually have our immunizations programs sit there. And this is not a Block Grant funded program. This is primarily CDC funding, but it does sit with Maternal and Child Health.
Then the other five sections break the population up into Maternal and Infant Health, Child and Adolescent Health, Children with Special Healthcare Needs, our Genetics Section, and then we have an MCH assessment section that helps support everyone.
As Betsy mentioned with that 30-30-10 rule, this is just a pie chart to show that basically the piece of the pie for children with special healthcare needs in our program is around 38 percent, 37, 38 percent right now. So that is one of the kind of federal rules that we follow.
Just again to mention briefly how our state went about the five year needs assessment this time, these are the federal purposes for having needs assessments across the states to identify the MCH priorities for the state, to arrange programs and policies around the priorities, to have a method for monitoring the success, and to be population based and community focused. In Washington our goals for having the needs assessment is, of course, to meet the Block Grant requirements but then we also want to make the process valuable work for Washington specifically, not just to fill out a grant requirement. And we wanted to create a process that was systematic and ongoing. We of course want to involve stakeholders and we want to avoid duplication of efforts. We wanted to know where we’re going. We don’t want to just be random in our efforts, so that’s the intention.
And like Eddie’s chart, this is kind of a flow chart of what our process was used. And I think – do I have a – yeah, there it is. Okay. This is an ongoing process so we have gotten to the point where we have identified priorities because we needed to by the time we submitted our Block Grant report last summer. But we still are moving in with this process. We formed a steering committee. It was actually more internal this time than in previous years where I’ve seen it. But we formed a steering committee. We formed work groups. These are all within primarily our Maternal and Child Health program staff. They all created logic models of the work that were done across sections. And it was a good learning experience for all the people in the section to kind of get out of their own little headset and silo and program to find out what was going on broadly. And that’s where we then came up with nine MCH priorities for the program and seven state performance measures. That’s just a description of the work.
This is kind of what some of those logic models look like. But they really have helped coalesce our efforts. It was really taking more of a holistic approach than we’ve ever done before. We kind of asked ourselves questions like what does a healthy MCH population look like? What do they need? What do we have to do to make all children healthy? And then that will impact children with special healthcare needs in addition. And you do have handouts, hopefully, that you picked those up in the back so you can read these details more yourself.
So this is, as I mentioned, part of a bigger process. So the needs assessment is what I’m describing and we’ve got our priorities set. We’ve got our measures set. But now we really are still working ourselves through the different priorities to come up with cross-office strategies. And this is, the strategy section is actually where we’re going to try to involve more stakeholder, partner, and family input to get their input on, ‘So this is what we’re intending to do. What do you think about it? What would you see us doing differently?’ Then we’ll be coming up with more of a plan and going to implementation, monitoring, and evaluation.
These are what the nine priorities are that we’ve come up with, so you’ll see a lot of overlap with Georgia. But they involve nutrition – and these are not in priority order, these are just the way they developed – nutrition and physical activity is going to be addressed; substance abuse; mental health; healthy physical and social environments; safe environments for communities; healthy physical, emotional, cognitive, and social development for all children; priority on sexual responsibility; access to preventive and treatment services; and screening, identification, intervention, and care coordination.
And you’ll see that the children with special healthcare needs really are never specifically mentioned in any of these priorities or actually in any of the performance measures. But that’s A-okay with me because if these things all work well for the MCH population there will be less children with special healthcare needs. There will be more children with reduced needs or children who are just plain healthy to begin with. So I really think it’s a great approach. I rely on these other sections to be effective in their program so that our population is as healthy as it can possibly be. So these, as I said, are listed in your handout so you can look at them in more detail. And then, of course, there is that section there of ‘and then a miracle occurs’ somewhere in all this planning, so it’s probably a very important step here.
As I mentioned the different sections of our Maternal and Child Health section, and then I wanted to give you a little bit more information about our Children with Special Healthcare Needs program. There are just eight people on staff. I mentioned Leslie down here who’s already here. Also Linda Barnhart. You can raise your hand. If you see her in the next couple days go ahead and talk to her. Say hello. We have a nutrition consultant. We have an assessment coordinator. We have an integration consultant. And we have our budget and contracts person.
We adopted the definition of children with special healthcare needs from the Bureau that you should all be familiar with. The mission of our program is to promote integrated systems of care that assure children with special healthcare needs the opportunity to achieve the healthiest life possible and to develop to their healthiest potential. And our principles are that families are the core of the service system. The community is the center of community service provision. Systems of care are comprehensive and are culturally competent.
Our program eligibility, we are a state that pays very little for direct services because our Medicaid program really stepped up to the plate in the ‘90s, met our financial eligibility, and actually has a very rich benefit package. So children that meet our financial eligibility really are able to get most of their services covered through our state Medicaid program. We pay for a few odd things that fall through the cracks of that program, but we otherwise are serving children that meet that MCHB definition. It’s a very loose definition of who a child with special healthcare needs is.
We are really in our program looking to the six national performance measures for children with special healthcare needs and are doing strategic planning around these to figure out what we can do to make our scores better on these performance measures and with the assumption that this is going to make services better for children with special healthcare needs. So hopefully as a new person you’re familiar with what these national performance measures are. But the one specifically for children with special healthcare needs are that children will be screen early and continuously for special healthcare needs. The families will have adequate private and/or public insurance to pay for the services they need. That children with special healthcare needs will receive ongoing comprehensive care within a medical home. Families will participate in decision making at all levels and will be satisfied with the services they receive. And that services will be organized in ways families can use them easily. And that youth will receive the services necessary to make appropriate transitions to all aspects of adult life.
We are really looking to the National Survey of Children with Special Healthcare Needs which was first conducted in 2001 to give us some baseline information. Hopefully you’ve heard about the national survey. It’s purpose was to establish uniform and reliable state, regional, and national prevalence estimates really for the very first time for children with special healthcare needs in a population-based way. So your state and our state has these scores, basically, from the 2001 survey. We’ve been using these, again, to give us a baseline of where to go. The important thing to me is not where we’re at and how we compare nationally so much as we are we at in 2001 and where are we going to go. So these are our different scores.
These are posted up on our various websites. We’ve been actually using these survey results also to take this information out to our stakeholders, including families, and really, this has been a great way to let them know what the performance measures are, how we did, and what are we going to do to make things improve in our state. So this is the score on decision making. This is the medical home survey question. This is the one relating to adequate insurance. This is the one more on community based systems. And then the one on adolescent transition.
So we have been using the data from that survey and then also other information. We produced a data book on children with special healthcare needs. And again, it’s just been a really good vehicle for talking about the issues and getting people involved and getting families involved as well. As I said, we’ve been doing strategic planning specifically around these performance measures and we are, you know, as I showed you on our ORC chart, there’s only eight of us. There’s not a whole lot the eight of us can do. We really rely on our partners. This one says my question is are we having an impact? That’s what remains to be seen and we’re looking forward to the 2005 survey that was repeated and when those results will start trickling out we’ll start to see if there actually are any differences in those scores.
We also are doing work to find other ways of measuring those same performance measures because that’s just a random telephone based survey for our state and for probably most of yours it was just a random phone call to 750 families in the state. So we were actually looking for some other measures as well to help us with our indicators of how we’re doing.
Our partnerships are very important to us. Other state agencies that we partner with, a huge state agency called the Department of Social and Health Services, that’s where are state Medicaid program is, where the Division of Developmental Disabilities is, where the Early Intervention program is and where Managed Care Plans also help implement the Medicaid program. So we really do work closely with these different agencies. We also work with our Department of Education which is called the Office of Superintendent and Public Instruction. And we’ve also in the last couple of years been working more closely with the office of the Insurance Commissioner which has been a really nice new partnership.
We also have -- let me see if my, yeah, this is the map – again, just to show you the pie chart, the pink is the money that we keep out of our Block Grant to fund our staff and all the overhead and all that that goes with us. But 85 percent of our money goes out to other contractors. And these are the various people in groups we contract with: local health departments, Children’s Hospital in Seattle is a big partner. The University of Washington in Seattle, we also have a number of contracts with. We support maxillofacial teams, neuro developmental centers, parent support organizations, and Healthy Mothers/Healthy Babies. I’ll tell you a little bit more about each of those.
The implementation of our Children with Special Healthcare Needs program is primarily through local health departments and there’s 39 counties in Washington state. Some of them are formed together in districts so that we have a Children with Special Healthcare Needs Coordinator in each one of those counties, who’s generally a public health nurse, who is there to help connect families with needed resources. So that is the biggest piece of our pie, is funding that goes out to those public health nurses.
Then we contract with at Children’s Hospital in Seattle they have a center for children with special healthcare needs who is an extension of the work that we do to help improve statewide systems. They develop lots of information for families, for other partners. They have resources for health professionals, training programs for health professionals. So it’s a very important partnership for us.
We have three contracts at the University of Washington Center on Human Development and Disabilities. One is to promote the medical home. And we have a medical home leadership network across the state. We’ve had an adolescent health transition project for years. Obviously these two fit really nicely with our national performance measures to improve medical homes and adolescent transition. And then we also have a contract to improve nutrition services for children with special healthcare needs and support a network of feeding teams.
I mentioned we have regional maxillofacial teams across the state to serve the children with primarily cleft lip and cleft palate and other oral-facial anomalies. We support a network of 14 neuro developmental centers that are providing early intervention services and beyond to children. Betsy mentioned the requirement for having a toll-free line. We do that through our Healthy Mothers/Healthy Babies organization and call it the Ask Line.
And then in terms of involving families I mentioned that for, I think it’s probably been close to five years, we’ve been able to have a family consultant full time on our staff, which is what Leslie Carroll is, who’s really been able to take the lead in encouraging family involvement and family participation. She mentors parents and professionals in terms of family involvement, helps to develop culturally competent family friendly programs and policies. And collaborates with existing statewide parent support organizations. So she is, you know, a full member of our staff. She has a number of responsibilities that are not really even just related to her family involvement. So it just helps infuse the family involvement at the table always. She manages two of the contracts that we have with parents organizations. One is with the state parent to parent program and one is with the state fathers network. So we actually have some of our Block Grant funds going out to these organizations.
It’s not just the family consultant in our program, but all of us are trying to encourage family participation in our family organizations, on our feeding teams, on our maxillofacial review boards and the medical home teams, in our regional meetings with our Children with Special Healthcare Needs Coordinators, in our Block Grant review activities. And the next step in our needs assessment, as I mentioned, is to create some issue briefs around the priorities that we’ve identified and get more feedback on that. And then we also have been fortunate to have some other grants that have helped us really beef up our family leadership development activities.
One of the things our family consultants has been doing is to work with families to really teach them how to tell their story when they’re in a group. And we’ve been able to use a graphic facilitator to work with families, as they’re talking and telling people about their child and their family this guy sketches this all out. And this is Leslie’s story about her own son with autism.
We’ve been able to create a family to family network in this state, which is to promote the value of having quality family-centered statewide support for children and youth with special healthcare needs. This includes family members of children across the state. We try to get some diversity there geographically and otherwise. It includes representatives from other family support organizations like Family Voices, like the fathers network and parent to parent that I already mentioned. And also some of the other state agencies that are promoting family involvement.
The commitment is there for cultural competency and diversity and to reaching out and mentoring new parents. And to really help create new family leaders, is what one of the goals is. One of the products that this group has actually come up with, it’s been out for a couple of years, but it’s Practical Tips for Involving Family Consultants in Program and Policy Development. I have a few of these, if this is something you’ve never seen before, or we have information on it up on our website. So you can take a look at that.
And then I just wanted to mention in closing that in terms of the regional connection, our region is region ten, which is Alaska, Idaho, Oregon, and Washington. And we’ve actually also been able to partner with these four states in a family involvement activity through a Champions Grant. So instead of applying for just one grant, I believe it was Oregon that kind of was the impetus to apply regionally so that Alaska and Idaho could take advantage of some of the work that has already been done in both Oregon and Washington to really enhance family involvement.
It says, ‘Teamwork is the fuel that allows common people to achieve uncommon goals.’ So we really try to use a team approach and I’d really like to welcome all of you who are new to the MCH team. And go team. There’s some contact information, or our website if you’re looking for some of the materials that I mentioned today. Thank you.