AMCHP 2005 ANNUAL CONFERENCE
DELIVERING RESULTS, IMPROVING PREGNANCY & BIRTH
February 19-23, 2005
PATTIE HACKETT: Thank you so much Rich.
RICH: Yup.
PATTIE HACKETT: Well we really do have a nice group here and again I thank you very much for spending your last day with us. On this part of the presentation we're just going to give you a bird's eye view of what states are telling us that they're doing around transition. As many of you are aware that the new block grant guide appeared in May of 2003 required states in 2004, for the first time ever, to report what they were doing around transition efforts. The handouts I'll be referring to today are the ones saying, State Title V National Performance Measures, and it has numbers 1 through 3 on the front. The other one will be a grid, again, marked draft, and it has National Performance Measures. And my name is Pattie Hackett, and I have the pleasure of being the team leading co-director of the Healthy Way to work national center. And also in the audience today is Kathy Bloomquist, also co-director, and was very helpful in putting together these block grant reviews to make sense out of numbers and what people chose to say. Under the National Performance Measures Six many of you have seen this phrase of transition to adulthood and how MCHB is asked its states to frame the work.
What it really means to all of us, it's the outcome of all outcomes. If youth don't have a place to go, if they don't get to have the life that they want, with the supports that are required on a on going basis. Then we will have a generation of people who will be the master of the remote control. And that's not what the diagnosis, the prognosis and the fight and the energy that families had all these years, was just to wait till 21 to do nothing. The idea is having a generation of tax payers instead of tax recipients is a possibility. I use this slide for a variety of occasions. One when I have agencies tell me that they are very busy and that there is waiting lists. And I remind them this is what a youth in their family face. If you think you’re busy can you imagine juggling all of these agencies at one time? And this is just a snippet of what the possibilities of what some of our families and most of our youths will face in their time. But each one of these needs to be hip. You need family support and you need friends, you need peers, you need community participation, you need visability in place.
With this sixth performance measure we are suggesting that there are five steps for implementation. That there should be some systems development. That youth deserve the right and opportunity to have participation in decision making. And that's not only on a personal level in health care but also into policy influencing. That there should be accessible and affordable health insurance. And the real hard part that we know between 18 and 21 is a very vulnerable time. We also know between 18 and 29 whether you have a diagnosis or not you have a 50% chance of not having insurance for that year. Medical home needs to be continuity of care and a quality care. Education, employment, recreation and independent living that is the outcome. And the two F's that we never talk about are fund and finances. I would love someday for us to be able to have a presentation using the word prosperity and people with disabilities in the same sentence.
Now we get back into the title. We know for our health group we call our kids "youth with special health care needs". And it is usually based from a genetic, a chronic health condition or an acquired issue. But in other federal legislation, and after the age of 18, our youth with special health care needs, will be into two other catagories. Under education services between zero to 21, they're youth with a disability or a youth with a health impairment. And covered under an equal rights bill of ABA in section 504 there either a health disability or health impairment or perhaps both. So I have always told my students, I don't care what the label is, if it comes with funding, that's what you are for the day, but in my classroom you are a student first, hopefully an employee second, and then maybe someday you will be an employer.
That was the goal. We take a look at the numbers, many of you in the audience already that these numbers exist. The numbers are increasing. But we take a look at the SSI recipients; you'll notice there is an interesting bounce. The figures on the first line, the zero to 17, and the 13 to 17, are fresh figures as of December 2004. But take a look at the interesting thing from the 18 to 21 and the 22 to 29. Is there an increase in these numbers? Because for the first time youth income is not from their parents income, their solo? Or is it because there is no place to go? And SSI is the only game in town to stay alive. I hope it's not the later but I suspect it might be. Health care transition, as many of you are aware, in 2001 MCHB funded an event to develop a consensus statement, in which they said when it's developmentally appropriate and technically sophisticated transition of care should occur.
That's one set. But the one I like even better than that is the responsibility of physicians. That young person needs to acquire the required skills to manage the disease in his or her life. This is the first time we are having this conversation. We've done a great job since Surgeon General Koop's call for action in family centered care. But we forgot to pass the torch; after all who were the services for? There for the children whom we speak on behalf of. But for the youth we should be speaking with, not to. Now in the range of possibilities how I chose to live my life while waiting for agencies to get together and they never did. It said what would you do if you though you could not fail? This has been my mantra I just thought everybody thinks like this. And for those of you who can't see the little icon it is an escargot on a scooter. So it's an escargot to go. So sometimes you need to move quickly out of certain situations. And I'll be happy to share this graphic with anybody anytime.
The death of dragon paradigm. Because after my son was diagnosed, and it was like the third or fourth day, and I thought that at nine months old and he was only gonna live a few months to a year. We came across the brace man, who I can remember, exactly what he looked like and exactly what he smelled like cause you were allowed to smoke at Children's Hospital at that time. And he said to us "don't care about the diagnosis, just live the life you would of anyways, just recognize you will have more equipment". And it set us upon a path of how the possibilities could be. And I thought everybody else thought like that too. I was really surprised after all those years that nobody else thought like that. That we were still pioneers and trail blazers. So the families that ask the questions of why. And the other people say it's never been done before. Have a new phrase, somebody's gotta be first. And I am glad you’re the pioneer.
Alright, so here's now again, the quick over sight. This is what was reported in the block grants for physical year 2004 were viewed them in summer of 2005 fiscal year and we review them in summer of 2004. We choose, if you take a look at the hand out, we choose to tell you that, and again, it's tell you, that transition is part of every single performance measure. Its part of screening, its part of youth and family decision making, and you'll see that I spoof that word youth in as often as possible. Even though it hasn't hit the literature that way yet but it will. And then medical home. And it's part health insurance and organization. And last but not least it's transition to the dependents. So under screening, 20 states report that they are doing some type of transition screening, because screening isn't just at birth. It's life long. It's eye glasses, it's scoliosis, it's screening for all kinds of things.
For under the National Performance Measure Two, and by the way, these are listed in the way that they appear in the block grant guidance, family, and again, I am sneaking in the word youth involvement. If you take a look Alabama has a young adult on the staff, first one in the country, and its part of Title V Staff. Kentucky already has a youth on their program board. But 48 states reporting working with family groups. A good sign. And eventually maybe we're gonna sneak that word and youth leadership councils as well. Four states report have compensated youth advisory committees. Sixteen and here's the word self determination, and twelve report use president staff conferences. Now keep in mind that some of you write wonderful things in the block grant and somebody else edits them out. So we know there may be some more good news out there, let us know if sometimes these blanks don't include you, just say I want you to know that perhaps got edited out but great things are happening. Because it is a movement it is a revolution.
Under medical home again, 36 states are working pediatric associations and five report working with family practioners, and 18 medical schools and training physicians. This is exciting, loved to know exactly what are they training about. Hopefully they are singing the same message. But the fact that they look at there is a great need there is a great gap. Because of the first time in our life we have a generation of survivors who are asking more for their life and they deserve it. The concern though, is states report very little activity related to health and wellness. The idea what do you do with the chronic issue, a life time. Have you learned to teach people have longer periods of wellness so health doesn't become the crisis in life it just becomes something that you happen to have. And under the National Performance Measure and Health Insurance, 47 are working with providers. And 7 distribute information on insurance.
What we need to share with you though is over 40 states in this country have a state mandate, a state law that allows private health care insurances to extend health care benefits to those children who are considered adult disabled dependent child. And that is one of the biggest secrets in the country. And the National Performance Measure five, coordinate care of system. As Rich said it takes a group of leaders like you who are here asking to do more with less. Who have staff that keep changing. And the kids keep growing and they want services, they want quality. And we look at this and we see a lot of good things are still continuing to happen. Look at the governors' task force the next to last line. And they are focusing on transition issues.
This is a replica model that can be done very well in the states because if you have the eye of the governor who has the eye of the budget. You perhaps might be able to get some funding that won't be in jeopardy. Again in coordinated systems care, I won't read them all, but you take a look at the last two bullets. What we note a little problem that perhaps maybe together we can work on. There are several transition funded grants by different federal agencies. We need to start sharing our resources. There is great things going out there. And we're all doing it separately. The families know who they are. Because they get services from here and there and everywhere. But wouldn't it be nice if we do some combined efforts. And very few states are mentioning the use of services in the national centers. No we know that they're doing it but some how it doesn't make it into the block grant.
Now in the one area that says Performance Measure six, transition to adulthood. Take a look at these numbers, they're really starting to grow. Knowing that in the year 2000, only 4 states reported any performance measure around transition. This is exciting. That 10 have a dedicated transition coordinator and many still report having a partial FTE. That 32 have transition training for staff and care coordination. Sixteen have and nine are formulating formal transition planning. I mean that's powerful. For the first year of reporting I can't wait to see what next year gives us. That eight transition activities and contracts with providers and those of you that do indirect services, this is how you can influence it.
The state of Kentucky put it in the job description of every personnel. That they'll have to be aware and involve transition as part of an out come of their services. And nine states report transition is part of quality assurance. As I mentioned before, Healthy Way to Work is a virtual center. It is housed physically at the Academy for Educational Development. But our staff is nation wide. And you have a sheet on your chair with that talks about the Healthy Way to Work web site. And it's HRTW.org. And if you just put HRT you get hormone replacement therapy. A different type of transition. So make sure you have the W. Now you will never forget our web site. But the web site is divided in four sections. Systems and services which has a lot of--that always gets a female audience--System and services has a lot of archival kind of history. If you’re writing a grant, feel free to go in and cut, paste and steal because this language has been blessed by a committee at one point or other. So we welcome you taking and using it in good places.
There is also a section on youth involvement. We'd like to hear from you what you’re doing in your state. What's working? Because it doesn't have to be big and powerful. One of the small movements that lead to something that makes policy change. Health care and insurance. This is a section we're really proud of. If you go into the health care and insurance section there is two parts. Public and private. And their fact sheets. Under the public insurances, there is a fact sheet on every Medicaid program. And I stole the template from ARC. Because if ARC could explain Medicaid and Medicare to their population then I thought the templates got to work. So it is what it is, how to apply, how it impacts you. And how do you qualify. And then if you really want some serious information, below is a lot of resources. Your welcome to take those materials and make fact sheets for your family, friends. And the last part is informed decision making.
We talk about ascent to consent a lot. In its new era of HIPPA people have to sign off of privacy. HIPPA also says you have to be your own signature. So what are we doing for youth to prepare them for that moment? Are we asking kids at ages 4, 5, 6 and 7 do you know what procedure you’re to have? Would you like to co-sign and authorize it with us? Because after all it is your body. That is ascenting. And when they are age 18 it is consenting. And I would encourage everybody in this audience to think about buying a signature stamp so in the event that sometime you can’t make your own signature, your signature is still on file. And then you can direct it when you need too. Because then you can avoid the awful thing that is happening in Florida today. Whether the g tube remains or not.
For my son that was a quadriplegic whose life changed drastically the last two years. He was unable to make his own signature. But he did have a signature stamp. And it was that power of dignity saying let me read the form first and I'll let you know when I'm ready to sign. And yes you may use my stamp. He still had control. And then under the tools and tips. This is a great place that we've archived a lot of checklists and health assessment tools. Many of which have been norms. And from a variety of places again, your welcome to go in, take and adapt as needed. Our new project officer as you already met is Scott Snyder. And we have a team of four. And Betty Pressler is not paid by our federal funds. She's one of those humming birds that are just fabulous, probably the best care coordinator in the country. And she's out there, trying this hospital. So we look forward to partnering with you some more in the future.