THE
HEALTHY & READY TO WORK PROGRAM
Thomas
Gloss, HRSA/MCHB
We're really glad you're here with us. This is the Transition, Healthy and Ready to Work presentation. My name is Tom Gloss and I am the Director of Healthy and Ready to Work initiative for the Bureau.
Merle told you earlier that all the men in our branch are named Tom, which is correct. This is the other Tom. I'm Tom Gloss. Those of you who don't know me, I have four children. My oldest is Semi--Semi Gloss. Then there are the twins, my daughters, High and Low, High Gloss and Low Gloss, and then there is my youngest, and she's a real trip. We call her Lip, Lip Gloss. Then there's my ex-wife, Use-To-Be-A Gloss. Okay, ,just a little humor.
Well, we're really glad that you're here with us oday. We talked about transition being the cap stone. It was added as number six to the outcome goals, not as an afterthought, but really because it's the culmination. If you've done all those other things, If you've done the great access to a medical home to comprehensive health care, you got the insurance to pay for those services, you've got early and continuous screening, you have all these other things family participation and satisfaction and then what happens? The kid leaves the Title V program and drops into a black hole which at the end of that black hole is something called SSI.
I worked for 23 years for the Social Security Administration, and eight and a half of those years was in a local office taking applications from people who were filing for SSI who hated life. They were getting a check and they were tied to poverty. They couldn't save any money to buy a house or at that time they could have a car, but it had to be worth less than $1500. Even back then, what kind of car was that then, right? If they had a house, it didn't count. They couldn't have money in the bank to put a new roof on and that is still the case. It's a pretty awful life. Would you want that life for your child? Would you want that life for yourself? No. Some of my kids are headed that way but that's another story.
So, we see transition and Healthy and Ready to Work as a real culmination of what the whole rest of the programs are about. The youth and families have told us that the services are not there. They are not coordinated. They are not friendly. They don't get what they need to be able to move on to what every other kid in America wants; sex, drugs and rock and roll. Kids with disabilities and special health care needs want the same things every other kid wants. They want a driver's license. They want somebody in their life who is meaningful to them. They want money in their pocket, so that they can buy the things that they need so they can have a social life. They want a job. They want to be involved. And that's what we think the program should aim for.
So, we call it Healthy and Ready to Work because in spite of a disability or special health care condition, a person needs to be relatively healthy to be successful in school or work or anything else. So Healthy and Ready to Work. Not that work is the end all and be all. Don't we all want to retire? Yes we do and I'm getting close. I told you, Bonnie, pretty soon. I started at 12, so I'm almost out of here. I tell Merle all the time I didn't sign up til 2010. I'm going in 2007. Merle may still be here working on this, but I am going to be in Florida on the beach.
We've been working on Healthy and Ready to Work for about five years now. We originally funded 8 projects in states across the country. Those projects are wrapping up. This is their final year of implementation. They've learned some interesting things.
Patti, would you write the website on the board? It's on there. Actually it's in the right-hand corner. Patti and I are fill-ins and I have a Power Point presentation, but she doesn't have a disk drive in so I'm just going to talk to you.
But we funded these 8 projects about five years ago and we have a website that has a link to each of the projects so you can get exact information about those individual projects and what they have done. Basically, they look at systems change issues. They looked at what happens with transition in those individual places in those states; California, Oregon, Minnesota, Iowa, Louisiana, Kentucky, Massachusetts, Maine. The Institute for Child Health Policy in Florida has been functioning as our national center.They have learned some interesting things.
Basically that the kids and the families need to be seen as holistic entities and that health is not the only issue, but it's not just an education issue. It's not just vocational rehab, that it's not just an employer issue. It's all those issues, and they need to be addressed together to make it easy and successful. Families do not want to be routed to each of these different offices only to deal with the same thing and be sent back some place, oh you needed that. So what our projects have found is that when you do a team approach and bring people in from representing the different systems, it helps the entire process and it makes it better.
It's interesting that in Oregon they did a survey of families and health care providers about transition issues. A few of those findings included that the health care providers thought that they were doing more on transition than the families or the kids did.
The health care providers thought they should start working with kids about transition way earlier than the families thought they should. We have more information from a project, not one of our Healthy and Ready to Work projects, but another project that's been running here in Washington D.C. for sometime, that says you have to start dealing with transition at about age 11 or 12 because that's when kids without disabilities are getting into their career thoughts. They are getting pre-work experiences. They are baby sitting. They are delivering newspapers. They are shoveling driveways. They are learning to be punctual. They are learning about handling money and responsibility. Not yours? The Gloss's yes. Semi was a little late. Lip was very early. Lip has every dollar she ever made and Daddy's paying for her car. So she's a shrewd one. But yes, the other kids are out there learning these experiences that the kids with disabilities and special health care needs say they haven't got. All those early learning experiences are very important. Pre-vocational things are very important to the outcome.
This project in D.C. also discovered that kids are not-and do not want to be-interested about their health. That's the thing that's consumed their whole life and that's the last thing they want to worry about. They're worried about the sex, drugs and rock and roll part. Do I fit in? Do I have friends? Am I like everybody else? They want that and everybody else has money.
They want money too. So this particular project learned that the hook was money. If you tell the kids we can get you a job to get money, then you have to take care of your health. If you are diabetic, then you need to take your insulin. You need to be worried about your nutrition and these other things. That was the hook that got them in. Health was definitely a major piece, a major focus. But it was not the hook that got the kids interested.
A project with PACER Center in Minnesota, part of the project was placing a school nurse in the St. Paul school district to work with kids with special health care needs in that school to help them learn about their disabilities and special health care needs. A lot of the kids couldn't spell what they had. If they knew the name of it, they could not spell it. They couldn't talk about it to somebody else. They didn't know what medications they were taking or what the ramifications were if they decided to stop their medication suddenly, which kids do. Sometimes kids don't like the side affects of the medication, so they just stop it. So, they talk about that in a group setting and got through the embarrassment or the troubles for kids relating to each other through different kinds of disabilities and special health care needs. That proved very successful there to broaden the kids' horizons and understandings.
So there are lots of neat findings that have happened from these projects and they are on the website. We also on the website have in .PDF format so you can down load it. I didn't bring one with me. I thought it was in my bag. It's a product and materials list. She's [Patti Hackett] going to talk about it a little bit too. But it chronicles all the products and materials that these projects have done over the last four years. So if you wanted to do some
training for health care providers in your area about transition, they have curricula they have already developed. You can take it and you might need to modify it a little bit for your particular location, but it's already done. There are CD ROMs, video tapes, there are journal articles, all kinds of stuff on training for families for kids for educators for health care professionals.
The Health and Ready to Work project in Maine did a tremendous work with kids there from youth and they developed a core of youth who got together and wrote curricula for what they want professionals to know. There's one that says what we want our families to know. What we want our doctors to know. What we want our educators to know. And these kids now take that on the road and they do the presentations and present it before the state legislature. They present it at conferences, in schools, and talk about what they as kids with special health care needs need the other people to know. And a lot of it is, you need to expect more of us. We get the impression that you don't expect much from us, that you don't have high goals for our outcomes our futures. It's those kinds of things. But there's a lot of material there that is really quite good. So, I encourage you to look at the website and down load the product and materials guide.
We also created a series of policy papers. This is the last one we did called Youth with Disabilities in Transition Health Insurance Options and Obstacles, which I thought would be a good one for your group. It talks about HIPPA and COBRA and Medicaid and how you get qualified for health insurance with SSI, all the changes in the SSI program. When a kid turns 18, now they have to review that kid's application and use the adult disability standard. So a lot of kids are coming off the rolls at 18. A lot of kids, on the other hand, come on at 18 because the parents' income is no longer counted. At age 18, they're considered an adult. So they may have a physical or mental disability and were disqualified previously because of the parents' income. So you have a group coming on at 18, and coming off at 18. It's not simple. But this publication gives a lot of that information and it gives all the things we did in this series in the margins where the statute citations so the best armament is knowledge. We've given youth, families and professionals all the knowledge that you need to know about which things a person may be entitled to. It gives it here. We also have several that deal with other issues.
There is one that is Basic Transition 101 we call it that talks about milestones and talks about at different ages what's available at IDEA and special education. It's a great beginner if you wanted to give somebody the nuts and bolts about transition. I'd refer them to that. There is also one on sexuality for kids with special health care needs and disabilities.
There is 504, which any of you know about 504, which is under the vocational rehabilitation that guarantees equal access. So kids who do not qualify for special education under IDEA which has a list of specific disability diagnoses, they may qualify for services under 504. So it is another way to get access to the services that are necessary.
Okay, I told you that we had awarded 8 projects some years ago. Those projects are ending. We developed the Healthy People 2010 agenda which includes this goal number 6 all youth with special health care needs who receive the services to make necessary transitions to all aspects of adult life including adult health care, work and independence.
Lynda kind of went through the action steps and things that she had in her work group. One of the action steps was that there would be a system in place through the Title V program in the state to make this happen. We viewed the Title V agency the children with special health care needs programs in the states as the most likely place to insure that those services are accessible. It doesn't mean that the state Title V would have to provide those services, but they would need to ensure that the families and youth would be referred to the right agency in the state if it already existed. If it didn't already exist then they should find a way to make it happen. We know that that costs money and that's going to take some changes in thinking and planning.
Two years ago we had awarded a project to Kentucky to develop a state model for how a Title V program would do this. Kentucky did some really interesting things. They are a direct service program and it's primarily nursing staff who deal with the patients. The first thing that happened when they went back and talked about transition was that the nursing staff said we don't do transition. That's handled through the schools. We're too busy dealing with their health issues. We don't deal with transition. Schools do transition. So, the director of the program said: " I guess we need to change the job descriptions." So, the job descriptions were changed and transition became a major focus in their program. So that at the intake point for the patient, the kid, the family coming into the Title V program, they talk about transition. So if it's a five year old, they're talking about what should a five year old be doing that gets ready to take on some more responsibility and have some experiences that will lead to transition later on? And they are telling the five year old's family as well as a 12 year old's family as well as a 16 year old's family that at some point at 18 or 19 or 20, you won't be seeing a pediatrician anymore. You'll be going to a grown ups doctor, to an adult doctor. They talk about helping the child learn about responsibilities and having chores and things that will give those prevocational experiences.
So they have changed their program considerably. Another example is that they had to develop a management information system and putting computers which they didn't have. So some of our grant funds went for doing that. And then it required training the staff on how to use those computers, basic computer skills and software training. They decided to open that up to the teenagers who were their patients their clients. So they were training the kids and
the nursing professionals and the other people in their office at the same time in the same classroom. They said it was a tremendous experience for the kids to see the health care providers that they respected at the next desk learning these skills that were obviously job skills and for the adult professionals to have the kids in the room cause the kids caught on faster. So it was very interesting for them.
The last thing I want to say is that those projects were ending. We just awarded five new state models to broaden out because we recognize that Kentucky is not a representative of all the states in the country. So we've awarded five additional projects to develop state models so that the other states could see these and find things they could replicate. For the first time I can say who they are. They have all been notified. Those include Wisconsin, Iowa, Maine, Mississippi and Arizona. So those will be five additional states that will be developing models of how you incorporate transition into a Title V program to ensure sure that when those kids age out of that state's program they aren't falling into a black hole, but that they are healthy and ready to work.
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End of Session