HRSA/MCHB 2005 FEDERAL/STATE PARTNERSHIP MEETING

PUBLIC HEALTH ACROSS THE LIFESPAN

Cross-Cutting Issues in Transition

KATHY BLOMQUIST: Good morning. A last good morning from our panel.

You all remember that when the SLAITS Survey of Children with Special Health Care Needs’ results came out, that only about 6 percent of families say that their children are prepared for transition. So let's look at few of the issues related to transition and then we'll look at some of the information we have about what states are doing.

The first issue that I'd like to talk a little bit about is the issue of planning for cohorts of youth with special healthcare needs to become adults. They are becoming adults. They're becoming adults in great numbers these days. The sending system has to prepare the young adults, the young people, for becoming adults, preparing the families when the children are young, preparing the youth, preparing professionals for all of us to help envision adulthood for these young people.

Secondly, the receiving system has to think about receiving them. The system is very different, and there may be some changes that can be made in the receiving system, but the receiving system has to have young people who are prepared to be part of it. There's less collaboration. Young people need to be able to be better self‑advocates.

And then we want to look at one plan. Those of us who were in some of the Champions meetings, we talked about one plan across the community so that we have good referral systems, we have good application systems for health and education, for housing, for work, transportation, technology and play.

The second issue is using data related to children with special healthcare needs. We want to find out what is going on with young people with special healthcare needs who are out of our systems already. What are they doing? Are they going on to higher education? Are they working? What's their health status? Various agencies can help us with that data. We don't have to collect it all ourselves, although we may want to do some surveys of the young people who have left our system, and some of those are available.

How are the young people doing? What are the health risks that we see? What kind of healthcare do they have? What kind of access do they have? How much do they use the emergency room? What kind of insurance do they have? Are they working? Are they parenting? Are they participating in the community? Are they enjoying the benefits of citizenship and the responsibilities of citizenship? And most of all, are they realizing their own dreams?

What do these data mean? What kinds of skill development does it mean for us that we need to offer in the preparation that we provide in our child focus systems?

And then monitor this data over time. What are the trends, what is it showing us, and what does it mean that we should be doing, and what are we not doing, and what could we be doing?

This is a list of some of the sources of data on youth. Some of it's for children with special healthcare needs and some of it's for other youth or all youth.

A third issue is youth involvement and youth education. And Toni just described a wonderful way the Title V agencies can have youth involved. We can ask our youth‑informed consumers can youth keep themselves healthy, have they learned how to do that, and are youth involved in all levels of program and planning policy development?

This slide gives us an example of some of the interdependence of all of the different areas of life for youth. And Brianne talked about balancing life, and this looks at all the different areas to balance life.

So how can the Healthy and Ready to Work National Center help? We can help you build transition into all the six national performance measures. And there's some things on our website that might help you do that. We'll talk a little bit more about what we know the states are doing. We can focus on transition from entry into the system through the system; again, helping youth, families, and professionals envision adulthood and develop lifespan skills.

We can help states connect with each other. Those states who are doing things with transition, states like Maine who are doing things with youth involvement, help those states connect with other states who are trying learn to do those kinds of things.

We have tools for screening and assessment and planning, teaching and evaluation. We've collected a variety of these tools, and their on our website. We can help exchange tools, and we'd certainly like to hear from you about the kinds of things that you're doing.

And then, of course, youth involvement, learning self‑care, becoming self‑determined, and becoming members and participants in policy.

This is our website, www.hrtw.org, and we encourage you to take a look at it. We have information on systems and the services, youth involvement, healthcare and insurance, informed decision making, and then we have a whole section on tips and tools that offer you lots of opportunities. Many of them are Word documents you can pull down and adapt to your own needs.

Now let's take a look at the block grant and the six performance measures, which include transition. The block grant performance measures are a result of Public Law 10362 and GPRA of 1993 which focuses on measurable goals that link funding decision with performance. And you're all very aware of the six performance measures which are effective mechanisms to achieve a system of care, and that is the goal, a system of care for all children with special needs by 2010.

The six performance measures are very familiar to all of you, I'm sure. And the transition one, No. 6, is youth will receive ‑‑ youth with special needs will receive the services necessary to make transitions to all aspects of adult life, including adult healthcare, work, and independence.

We did a review of the block grants that were submitted last spring and summer that are now on the MCHB website, and the ones that you submitted this past year will be up soon, I'm sure, and we looked at what kinds of things are states saying they're doing in relation to transition, and we separated these out by all the difference block grant performance measures, and this is what we found.

No. 1, the block grant performance measure on screening. We found that 20 states report some sort of transition screening. It may start at 14, as the consensus statement recommends or ADA recommends, or it may start much earlier than that when they first enter the system.

For performance No. 2, youth involvement and family youth involvement and cultural competence, we found that Alabama is the only state that has a young adult on their staff, their permanent staff, for children with special healthcare needs, and they also had a youth advisory committee that was not sponsored by the Healthy and Ready to Work project. Kentucky has a youth on the commission board, and a couple of other states are planning to do this.

48 states say they work with family groups. We've come a long ways in working with family groups. Four states have compensated youth advisory committees. Maine was the first; Alabama, without Healthy and Ready to Work, and then the other ones with Healthy and Ready to Work projects. It's also interesting to note that we know there are some other youth advisory committees because Healthy and Ready to Work has supported them, but they were not mentioned in the block grant.

16 states report self‑determination or person‑centered planning for youth. 12 states report youth present with staff at various conferences. And we found that about half of the states report cultural competence activities.

Related to medical home, 36 states report that they work with their state pediatric association, and many, many fewer states, like about four, report that they work with family practice. Five states report working with state family practice, internal medicine, or state medical associations. 18 states report that they work with medical schools in training physicians. And then states report very little activity related to health and wellness, developing responsibility for healthcare reviews by youth, HIPPA, or use of insurance

Block grant No. 4, health insurance. 47 states report that they work with insurance providers, that's usually Medicaid, and seven states report distributing information on insurance that includes transition issues, and Maine is one of the leaders in this area also.

Block grant performance measure 5 is a coordinated system of care. 29 states report involvement in a state or regional interagency collaboration group related to transition. These are often education‑based, and health is involved.

41 states collaborate with state or local education departments, sometimes with great effect and sometimes they're just sitting at the same table together. 29 states report collaboration with VR. And it was mentioned several times that that collaboration is very difficult. Six states have governors' task forces that focus on adolescents and transition issues. That's what was reported in the block grant. We know from other sources that 17 states have Children's Cabinets, and the potential is there for much more work on transition issues.

14 states report transition as a service on their website. We did that by reviewing the websites, and we've done that every year, and that's up from five states in 2002. So there's a lot more interest in information on websites related to transition in the state.

More information on Block Grant No. 5. 15 states report some sort of service directory that includes transition resources, and it's usually in paper form, but sometimes online. 17 states report developing materials for transition for youth and families. There's a lot of these kinds of transition materials that have been passed around from state to state and adapted, and we highly encourage that. Very few states, however, mention collaboration with transition‑related projects funded from other sources. We know that SAMHSA has five transition fund ‑‑ or SAMHSA‑funded programs, and we know the two in Maine and Utah that are Title V and SAMHSA are collaborating related to transition.

And very few states mentioned using the service of the MCHB National Centers. We know at the Healthy and Ready to Work National Center that we've worked with many, many more states than say anything about it. So we would like the MCHB to take a look at how the states are using the national centers and how we can be of more service to you.

Then, of course, No. 6, transition. We found that ten states report that they have a dedicated transition coordinator, and oftentimes that is part of a person, but there is some dedication to transition coordination. 32 states report transition training for staff and incorporation of transition into care coordination. 16 states say that they have and nine states are planning formal transition planning for youth. Eight states say that they provide transition activities in contracts with providers. Many, many of the states contract with providers for services, and they're starting to build transition expectations into those contracts. And then nine states report transition as a part of quality assurance activities.

And this report is available for you at the Champions for Progress website if you want more details. We also have a list of the transition variables that we looked at that was developed by going through the block grants and then adding a few things that we thought should be on there. And CiCi has some of these copies if you're interested.

So what we'd like to suggest is that you look at the outcomes of your services. Transition is the ultimate outcome of our services, I think. Look at things like quality of life, prevention of secondary disabilities, healthcare access in youths, health insurance, and informed decision making by youth. In addition to those, have‑a‑life kinds of things such as education, recreation, work, and independent living. Let us know if we can help you. This is our ‑‑ my particular information that you can contact us. And, of course, you can look at the Healthy and Ready to Work website. Thank you very much.