YOUTH
AND TRANSITION ISSUES
Patti Hackett, M.Ed
Disabilities Studies and Services Center
Academy for Educational Development
Now today, with an eye on tomorrow, I'm here for a couple reasons. One as a professional and two as a former teacher. But more importantly, my lessons learned come from my son. And a mentor that I had, when we got to meet each other, I guess when Glen was about 18 months old. No matter what Glen's diagnosis and prognosis was, she said the magic words to me: " He may live and be able to go to college. He may live and bury you." But after going back to Boston Children's Hospital, hearing that 9 months to a year was just it, and we practice the Irish funeral birthday each year. Glen turned 28 last May.
This young lady by the way in this picture is Linda Mona. She has a Ph.D. She use to work for the World Institute on Disability and she's a practicing psychologist.
So, I was really excited to see Healthy People 2010 include the transition goal because in my thought is: "what have we done in all these 18 years of services for? What's our end product? Do we think about these kids, we obviously want our kids to live. But did we realize they would live to 18 and then what?"
And as a former teacher, I can tell you health was often neglected in the schools, and it interrupted learning. This is my son who also happens to be with me today. Glen is an assistant editor for Wire to Wire which is a daily publication in Ocala, Florida, Ocala being second to Kentucky in thoroughbred horses. He has a pretty interesting diagnosis, spinal muscular atrophy g-tube now on oxygen. When we were doing SSI applications, I said he had limited use of his hands and then somebody else in the office wrote down he has functional use of one digit ten centimeters. So, we have a little different picture here of abilities and capabilities. And he was a 504 student.
Early on, I recognized there was a law that allowed an equal education and I saw in Cincinnati where we use to live, (we're originally from Boston), that special ed didn't have the same expectations I had for my son. And through a wonderful mayor who helped back us, Glen was able to be integrated, and I use the word integration because that is what it is. And the mayor by the way was Jerry Springer. Yes, the Jerry Springer. Now that's a different story at another time. But seriously, he was a good guy. He also happens to have a daughter who is deafblind.
Now MCHB, as Tom mentioned, has a couple materials dedicated to transition. We're real pleased to see the Academy for Pediatrics has a medical home project with a component of transition. And as they are doing these presentations throughout the country, the question is what happens not only to physician transfer, but how is health care coverage handled? We do have a policy paper in transition; one on insurance and the other one is on policy products and papers. I encourage you to download those from the site.
Now, I call these stress intersections, because anytime when things don't work, it makes you think about what should happen. Sometimes there is a solution out there and oftentimes it is one you have to create.
From the ages of zero to 17, since Lynda told me this was about insurance, most of my comments and stories will focus on that. Children can be on Medicaid, with SChip, or an SSI connection, private pay, or both, and family plans being traditional. I encourage you also to think about families that are step families cause the funny story in our family is Glen is covered by my first husband, his father's, insurance and his third wife. And his third wife's birthday beat mine by one week so therefore, she was the primary. So these are things you learn along the way.
But at age 18 and 25, the world changes. Many times families, even those who are on the family leadership level, haven't been warned, haven't been advised, that all of a sudden things need to change.
When I worked at the University of Florida, Glen turned 19 two days after my first month on the job. So technically, he would not be able to remain covered as a disabled dependent. And we discovered this seven years later. So there are these little cut offs. You have to kind of work the system to find out where the fallouts are.
So at 18 to 25, Medicaid could be reapplied or applied for the first time, because this time this child could be a single head of the household. He could also have the SSI connection, and we're hoping that many states will take advantage of the Ticket to Work, even though they're just a little bit slow on it.
Private insurance, family plan. There are two options for this population between 18 and 25. The first being student status. That works, as a lot of our kids, especially those with chronic health conditions, usually don't want to be labeled disabled nor do they want to be labeled dependent. The problem comes when if they have a diagnosis such as Crohn’s or respiratory issues and they take a light load one semester because they are rebounding from some health issues, they may not qualify for that student status. That becomes a problem. Or they may want to think about disabled student status and then they can take as many credits as they can. Now if you're a student, you can work. If you're a disabled dependent, and I'm being recorded, if you're a disabled dependent one would not want the income to show. Are we following?
Then there is also the option of private through employer. The person works enough hours that they, for the first time, have their insurance plan. Now this may come with a pre-existing [condition clause] and if you're having a good course and a well year, my recommendation is do an HMO. If you're a little concerned and you can afford the HMO [together with a fee-for-service plan] and you want to do a private one, people have asked me well how do you afford two payments? I get very creative. I say think about second mortgages and owning separate businesses and I'll share about that in a little bit.
Seasons for asking. Now, "no" is based usually on someone's definition of;" that's all I know about the situation so my answer's going to be no." I advise families to think about [this], when you can find a "yes." And you first have to find out when the "no’s" come more often than the yeses. So in hospitals you know never to ask during a shift change. In schools you always ask before school and in February, they start talking about placement for next year. In transition I suggest thinking about five years.
I had never dreamed that Glen would live this long. Well, yes, I dreamed it but I really wasn't sure he would. But I'm so glad I kept thinking in five-year segments. And when he graduated from high school, that was as far as my balloon went. And when he graduated from community college and he's drawing down two paychecks, I'm just amazed because he now has his own horizons. And I'm very thankful for the adult mentor who kept saying to me think ahead.
Now, the money is in physical quarters, especially for vocational rehab. "Yes" is common the first quarter. And they definitely come in the fourth quarter. "No" is common in the second quarter. And the third quarter is a great time to plant a seed because it is starting to be spend down time. So you know if you have large ticket items, start thinking about when you can say yes. And the insurance, now I learned this one from Glen's G-tube supplier, about a benefit inquiry. Are you all familiar with benefit inquiries? If you have a high ticket item like Glen's G-tube supplies, that would come to $1500 a month. And not being sure if an insurance plan will cover it or not, you can ask a friend who already has insurance if they wouldn't mind calling in and seeing if that supply would be covered. And that's when you really find out what's not written in your benefit package. And that's what my supplier says.
And then there is open enrollment. Every time families say to me: "my insurance doesn't work for me", I remind them they do gave an option. They do have open enrollment. And if they can coast til the fall or in the spring, whenever an open enrollment comes they aren't stuck with what they have.
Tom, do you want to mention anything? Healthy People 2010?
Tom Gloss
No. Talk.
Patti Hackett
Okay, here's what I thought on this. There are four action steps within Goal Six Healthy People 2010 and the first one targets Title V. And this is not only setting up systems, but what's not mentioned here, and we all think is there is the attitude changing expectations. I think Ann Marks said when she was the director for the Kentucky State Title V, when she thought about the computer program, it came from various ways. She knew her nurses needed computer training. She knew the kids that she had in clinic could benefit from computer training. She could not justify funding for the students. She could justify funding for the nurses. And she thought having a mixed environment would be good because the kids could get the training that the nurses had received. What she didn't realize the extra benefit was the nurses got to see the kids for a longer period of time than they did in clinic. Now there are not too many families or kids that look good after they've been sitting in clinic for two hours and then they get into a clinic office for 10 or 15 minutes. It's not their best side. But it was interesting. The kids then got to see the nurses not know as much as they did about computers. So it had just different expectations.
And youth could participate as decision makers. People here, are you familiar with Linda Rowley who runs the Family Village [website] How many people are? I have her web site later on. This is a phenomenal gal. She's a real information queen. And her website is very family friendly. She also happens to have a 15-year-old son with spina bifida. He's a techie like his Mom. He carries a Palm Pilot. So when he goes to clinic, he prepares his questions on his Palm Pilot and it also has a list of his medications. On this last encounter, he was having some problems with his medications. So he flipped open his Palm Pilot to the intern and that's not your usual;" how are things going?" And he said;" I'm having trouble with this medication. This is how I feel." Well the intern flipped open his Palm Pilot and looked it up in his Palm Pilot and it said:" Yes, Mitch take a look. You're right. Everything you're saying is exactly right." Now we're going to be living in a whole different world.
Glen gets a massage every week. His hand is over rotated because one time, you know, there’s always one bad time. They put an I.V. in and broke his wrist. Well that was ages and ages ago. The masseuse said how did that happen? I don't know. So when I got in the car, I said: " Why didn't you know? You're supposed to know your medical history." You know I'm the champ that knows all that, right? It only took me 20 years to learn it. He said: "What do you want me to do, live a life or be a medical book?" So I'm thinking back to this Palm Pilot. All he would have to do then is put in " wrist" and it would call up the history. What should he know about the wrist? So I mean we're going to be living a little bit better.
In informed decision makers, you will see me say oftentimes, assent to consent. I think it is important that when anything is done to our kids, and if you are doing surveys, ask if they are having children co-sign on all procedures because it doesn't magically happen at age 18.
Action Step Three. This is affordable health care. Now this is your thing. I'm not an expert in health care. I'm only an expert in how to get some bills paid. Sometimes using the system works for us, and sometimes making friends within the system works for us, and sometimes going to pawn shops and second mortgages has worked for us. Glen sits in a powered wheelchair made in Sweden. This is his third one. It is $26,000 and it does wonderful. It keeps him upright, it keeps his pulmonary going. It doesn't have air conditioning or CD ROM. It should have those things. But this last one, because of good documentation, and I kept looking around; and Betsy was one of the people that helped us write this letter and talk about cost benefits. Having the $26,000 wheelchair could prevent the $38,000-in-patient visit that Glen had two years before. And these are important items. So I'm expecting you to work on this one, but if you need creative solutions, come to me.
Now Action Step Four talks about the medical homes. "Glen, do you mind if I share about last month?" [Patti asks questions to her son, Glen, who is in the audience] He asked: "Does he have a choice?" He was raised by an Irish Mother. will be short. "How are you getting home? May I have your permission to tell most of the story, if not all? Okay"
Glen has just come off of a catastrophic health event. He's been 20 days in-patient, was coded, had two intubations, seven bronchoscopies, on the vent for 15 days, got discharged on his birthday, and not even a month later, alive and well and on O2. But what worked for him in that system is he drove it. He knew that he is going to have events like that. This is his 29th in-patient. I can't tell you how many out-patients that we have handled at home. So this, even though to other people is catastrophic, to Glen it is part of his course. There's going to be good times and bad. He directed his course. So when they revived him, I'm at the nurse's desk asking for a file folder. Most people want to make a phone call. Now I want to make a file folder so I can create a word board, so my son still can direct his care. So we divide the alphabet in thirds and later on he commits to memory where the letters are and then he taps my hand, first line, second line, third line. He spells out what he wants and needs. Now this is only the third time Glen's been in this hospital and they don't have an open visitation in ICU. So the first thing I ask them is: "what's your assistive technology device so quads can notify any nursing staff when they need assistance?" Well, they don't have any. So therefore, they have an increased liability and I'd be willing to sit there 24/7 to help them lower their liability. So then, we have open visitation. It works out real well.
But I have a better one for (you) about Boston Children's Hospital, and remind me to tell you that one. So Glen's directing all of this, and then on the weekends, now we have a new doctor we've never met before. Now the floor nurses are kind of intrigued by this. The respiratory therapists love it because Glen can say when plugs are coming and he would tell that real quickly, so he was always really ahead of his events. But the new doctor wasn't ready for this and he kept talking to me and I kept thinking: my gosh, here's a person who is 28, and not too many of us do look good horizontal. So when Glen was out, he signed waivers [beforehand] that I could talk on his behalf; and when he was up, I didn't talk. I only interpreted. So we had a little head-butting session, and then he realized that I wasn't his patient, and he was thankful.
Now the thing with the doctor at Boston Children's, his name is Fred Shapiro, and the family rep that he deals with is Ruth Walden who comes from New York. Her child has a bunch of unusual issues. Oftentimes, their insurance company wants to discharge them a little bit earlier than most. So, Fred then has Mom come into an office and they make the phone call to the insurance company. This is after this insurance company says this kid has to be discharged today or tomorrow. So then he announces who he is, and they think it's just going to be a rebuttal of what was said before. And he said before we begin our discussion, I want you to know the Mom of this child is in the room. "Ruth, would you introduce yourself? Would you identify yourself as a subscriber to the plan? "And she does. He said:" now I've have shared with her what the insurance company-you-have said I could do with this child, and it's against my medical judgment. So therefore, if there are any lawsuits, I want you to be aware that she's been totally informed." And he always gets five more days. It always works.
Now, seasons for asking and we went through that one. But think about that with families because I think what worked for Glen and works for us is [that] "no" always what seems to come first. When Glen coded, obviously he was going into ICU, and I've got the bags already to roll, and the first thing is" our visitation hours begin at 12." Well, that would destroy most people, and [even] a family leader that most likely could be combative. My thing is: who is the nursing supervisor and how many shifts do you have? So I had two. So I had to do it two times.
Okay, equals or meets the needs. Physical therapy. We're going to talk about some issues where we oftentimes run into problems with insurance plans. Only ten visits per year. Well then I suggest that families augment them with something that equals this. Massage therapy comes close and you can do some fillers. There could be coordination between communication between families and massage therapists and physical therapists to help keep this kid in good status.
Durable medical equipment. Long-term cost benefits. Betsy gave me a fabulous phrase. I know it stuck in the mind of those insurance companies when they read it. I carved those letters out by using old documentation from other places and then I had some medical people look at them. Then I brought the disk with a hard copy to each provider. I said here is something that may help you when you craft your letter. Many times the letters were: "God has told you to do this, fund it." And many times these physicians don't have that kind of leeway with insurance companies. But they did when they found out that the wheelchair in his past history and how the benefits of this chair would help him and it wasn't just psychological.
Now, the coverage. An interesting Mom who is a friend of Gloria Weissman at the Bureau, gave me this treat. She has a child who has traumatic brain injury. Her child is probably in her late 20's. She had difficulty getting insurance. She said just create a small business and many times Chambers of Commerce have a consortium of small business insurance plans. It will buy you a year until you figure something out.
Premiums. I love the word premium cause you're always thinking of getting the best. And I think the first time when Glen was diagnosed, they said you've got the best insurance. You've got a million dollars coverage. It will cover everything for his lifetime. Well I can't tell you how many lifetime insurance plans that was. For many years, it was both sets. When I was married, we all had these ex-husband and ex-wife stories. You have four sets of insurance for several years on Glen, just in case one of us had a problem, Glen was always going to be covered.
Now premiums. We've done second mortgage a lot, cause it is a tax benefit. If you're going to shell out something, you may as well have a tax return for it. I'll just share something that happened to us the other night. I'm in town for the IDEA Partnership for educators. And they didn’t have enough rooms at the hotel we're finally at. So, they put us in this very lovely hotel, $262.50, you would expect this to be a lovely hotel. The first room we couldn't get in. Okay so now that's not too bad so then they have to clean the second room. That takes an hour and a half. Then dinner's going to be comped cause you know my time means money. So we get a nice filet mignon and half a lobster, and that was lovely. But we didn't get back til 10:00. And then I kept thinking: "I know I'm in menopause and the room is hot, but this room should have cooled down by now." I had it at 60. So, I called engineering up. Now mind you, this is a premium room. The engineer comes up and he says "you know, I just fixed this yesterday. Obviously, it didn't work. I'll get the fan." Well, in my mind he’s an engineer, I'm expecting him to get a mechanical part. I'm from Florida. I'm not having him bring a fan in the room that rotates back and forth. Now I bring this up, because this is similar to what families have when they buy these insurance plans and they're assuming it's going to buy what they want. When it doesn't, what do they do? You have the power to at least let the person who purchased the plan-not the family-the employer and the employer company who purchased that. Tell them why it does not work for you. Many times when families are dealing with these issues they are not working or they're non-productive.
At the Academy, there is a lady who runs NICHCY and her name is Suzanne Ripley. She has two kids who are disabled, who are in that 18 to 25 range. She was not aware, in a timely manner, and there's two sides. One, she could have received notice and the other, is her kids are getting old enough. She should also read too. But her kid was going to be dropped from the insurance plan. Our boss wrote the president of the company a letter stating why she thought this was unjust and unfair. And then they changed the policy. People many times want to say yes if you give them enough information.
And QI and purchaser. If you don't tell them what's wrong, you can't get it fixed. I immediately went to the Wyndham general manager, cause I kept saying: "Glen, what was that, the Wyndham Way?" If it's a Wyndham there's a way." I kept hearing their commercial and I kept thinking, "This isn't the Wyndham Way." I just let her know that I didn't have the experience that I thought $262.50 deserved. Even though it wasn't coming out of my pocket, it still wasn't what I wanted. So, we got a comp room.
What's in it for them? Portable medical file. Again, when you do your surveys, are you asking about what the consumer is starting to learn? Glen never leaves state lines without the portable medical file nor when he presents in the emergency room there is always that file. Kids with thick files who live a long time, those files are often sitting on somebody else's desk. Sometimes they don't make it down to central [admitting].
The idea for healthy way to work is wellness. You can't learn you can't work if you're always having health episodes. Assent to consent and then consent to consent. There is going to be that time when Glen and I had the difficult conversation when his CO2 hits 75 and things weren't looking good. Trach or no trach. Vent or no vent. DNR. Even though you have these conversations when people are well, you have to revisit them during different times and there has to be this back and forth.
And then living the life they want. It's really important to mix passion. Now, when I was a teacher, I had all kinds of families. Some had graduated from colleges. Many had never even graduated from middle school and my best Mom in the world was a graduate of fifth grade. She wanted the best for her kid and all she wanted was somebody to tell her and somebody to challenge her. So I got the phone call the first night-and all my parents had my number. She said: "but there are kids in Chris' class that aren't in wheelchairs." I said: "yes, and your point?" So sometimes, you have to talk to families and just give them an interrupter. So we gave him 30 days to feel comfortable in the class. He didn't feel comfortable. We find another situation. Of course he felt comfortable. He just never had the experience.
And the issue of belonging. Families will do better if you just invite them. Triple A does wonderful trip tixs and they give you those here-to-there and then those little stop marches and here's a speed trap. But they also give you side routes that you didn't think about. And I think as professionals and again in surveys, did the professional tell you something of value that you didn't know? Or what mistake did you make that you learned something from that you could share? I don't think we capture enough of that. But there is a variety of ways of getting information.
Model the behavior you desire in others. Again, it goes back to the attitude—cause in my heart it's integration. I cannot understand why physicians refuse to treat our kids who are adults. I share that Glen has a pediatric body, age—appropriate mind, but geriatric health problems. So whenever there seems to be a reservations, you mean you have never dealt with a G tube? Well, you never dealt with a G-tube at age 28 maybe, but a G-tube's a G-tube. Just treat my son with dignity is what I have to put behind it.
And the power of his signature. Signature on consent forms, signatures on letters. I had a wonderful grandmother who wrote everyone. If they had good things to say or good products you let them know. But when Life Buoy soap decided not to make any more bars, she wrote the president of the company and got two cases. So, she always said there is power in that signature. She also subscribed to the Cincinnati Enquirer, when she lived in Clearwater [Florida] and then when she moved back to Cincinnati, just before she died, and Secret Service came to visit her one day. Well she was deaf, and they had been pounding and pounding on the door. The neighbors said she was deaf and they were thinking she was being resistant. Well it turned out there had been assassination messages going to Nixon from somebody who had lived in Florida who had subscribed to [that paper] and so they said:" well, you don't look like the person who could be sending these letters." She said: "Well, I just may have cause I never liked him anyway".
So, you take a look at where the source of power comes for change. This inter-generational support is quite helpful.
Negotiate. We don't teach families this at all. We teach them to accept, get angry, talk about compliance and butt heads. When do we start talking about compromising? When families come to me and say the nurses don't even listen. The first thing I say is: "what time did you ask the question. Did you ask when they had time to listen to you? Did you ask when they weren't busy? Did you say it's not a crisis right now, but when you get a moment, could you come back and talk to me?" We forget it's reciprocal responsibilities.
Sharing solutions. Linda's son recently received a paramobile, which is like Glen's. I sent her all the documentation. Once we start sharing these things, the answer becomes yes.
Justification. I don't know if you can see this on the side. It's an escargot on a scooter. When you take a look at options and opportunities oftentimes it is not what you think is out there. It's something you really have to create. What would you do if you thought you could not fail? I think that is the way we've been living our lives because the idea is that Glen has a life. His passion is horse racing. His assets and capabilities are in math. He needed technology to equalize the playing field and then the opportunity he had to create....
Now information to go...NICHCY has been around for years. All the materials are vetted. Family Voices has a wonderful growing web site and again Linda Rowley is the driver behind that. Family Village is my ultimate best of the best.
Now the President's Task Force for Adults with Disabilities has a youth component, and they are starting to understand that there is this health angle. There is this insurance jeopardy. There is this resistance of, if I don't have my SSI income, am I going to stay well enough long enough to be able to sustain a life that I want? Last year they convened a youth summit. And this year...
Tom Gloss
...It's being done through the Department of Education. I realized that when I sat down I hadn't talked with you at all about what we're doing with the Presidential Task Force. But President Clinton did form this task force, and it runs through June of 2002 and it's still functioning under the Bush administration. They have White House interest in what we are doing and a major part of it had been a youth subcommittee and is now elevated to a full committee and it involves federal agencies that have anything to do with youth and disabilities so it is SSA and HCFA and HHS. It is various agencies including Administration on Developmental Disabilities and the Administration on Children and Families, HRSA; I can't remember all the rest. But we've got HUD and the Department of Labor. The Department of Labor has billions of dollars in their youth initiative called YO, Youth Opportunities. HCFA has multiple millions of dollars, both what Patti mentioned in TTW and WIIA, the Ticket to Work and Work Incentive Improvement Act. They are doing infrastructure, grants. I served on a grant review panel for them two weeks ago. They have money to fund every state. States have to submit an application that is doable, that's decent and they can get money to start allowing people who are working to buy into Medicaid and it goes from age 16 to 64 so it includes our population. You all ought to be working with your state Medicaid people and you ought to be talking and knowing what options are there and encouraging them to be on board because our consumers, our constituents need this.
Merle mentioned earlier about the fact that part of the Presidential Task Force executive order included authority for us to do the Healthy and Ready to Work interagency work group. So this would be a group of all the federal agencies focused on health and we're going to pull that together.
Social Security is doing a number of projects. One specifically takes place in Florida and Maryland, with the intent that at the end of the three years it will go live across the country where they are paying a contractor to do an additional vocational assessment of kids before they turn 18. So it's this 15, 16, 17 year old population to insure these kids, that they have access to every service they need, so that if at age 18 they are found no longer disabled when those adult disability standards are applied to the case, these kids will have had the opportunity to be vocationally ready to go into employment. That's it.
Patti Hackett
And the last one is Social Security. For years they were known as an agency that cut checks with hopefully no fraud, and on time. They now have a subcommittee and a separate organization it's the Office of Employment and Support programs and they have a youth division that has a person who grew up with a disability in charge of it. And it's just a whole new world.
This is how you can reach me. It's my name at Yahoo, pattihackett@yahoo.com. I welcome your comments and ideas and also suggestions because as we move forward, the Healthy Ready to Work Ideas attitudinal changes, hopefully creative service and expansion for our kids to have the dream that they want. It will take all of us to spread that message out and I think some of us think we are there yet and some of us need to shift a little bit more. But there is room in this country. When you look back and know that IDEA has been around for over 25 years, and many problems we had back in the late 70's we are still experiencing today, we still have a little more to go. But health can be a nice addition to the playing field because kids are healthy and they get to learn and then they get to work.
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End of Session