November 17, 2003
2:00- 3:30 p.m. Eastern Time
Wendy: Good Morning, afternoon or whatever time of day it may be for you. This is Wendy Jones from the National Center for Cultural Confidence welcoming you to this first in a series of topical conference calls for the 2003/2004 year. I have several colleagues with me today that I would like to introduce themselves.
Suzanne: I am Suzanne Bronheim. I work with Wendy on this project.
Isabella: Isabella Lorenzo Hubert. I work with Wendy and Suzanne.
Wendy: Also sitting in with us today is Roz German who is with the Georgetown University Center for Child and Human Development of which the NCCC is a part. Our other partners for today’s call include Diana Denboba, our federal project officer. Diana?
Diana: Hello everyone. I am with the Division of Services for Children with Special Health Care Needs and the Maternal and Child Health Bureau.
Wendy: For today's call Diana and I will be your moderators. Before we get started I wanted to give you a little bit of overview and purpose of the topical conference call series. And to acquaint those of you who are new to the call to the structure or how the call will flow.
The NCCC has a cooperative agreement with the Maternal and Child Health Bureau. The Children and Youth with Special Health Needs project of the NCCC is sponsoring the topical conference call series. The goals of the NCCC are to increase the capacity of health-care and mental health services, to plan, implement and evaluate the provision of services to children and youth with special healthcare needs and their families from diverse backgrounds. To that end the NCCC and the Children and Youth with Special Health Care Needs Project in particular seek to incorporate cultural and linguistic competence pence into strategies, to implement, measure and monitor the six core outcomes for community-based systems for children and youth with special health care needs and their families. This is in keeping with achieving the Healthy People 20-10 goals and to carry out the President’s New Freedom Initiative.
Our other goal is to assist state title V Children with Special Health Care Needs programs and MCHB discretionary grantees to fulfill the vision that MCHB has of equal access for all to quality health care in a supportive culturally competent environment, which is family centered and community-based; and in which health disparities by racial, ethnic and economic status will be eliminated and that MCH public health agencies will exemplify the highest standards of excellence by employing a highly qualified diverse workforce and providing a respectful and supportive work environment.
With all of that said let's talk about the call. The call is structured such that Diana and I as the moderators of the call will speak with the speakers, asking them questions and this will go on back and forth with each of our four featured speakers for today. At a point in the call we will open the lines. The operator will assist us with a question and answer period. This will continue until as many questions as possible are answered within the allotted time. The call ends with closing remarks.
Without further delay, Diana have you some perspectives from the Division of Services for Children with Special Health Care Needs to share with the group today?
Diana: Thank you Wendy. Wendy had talked about the core outcomes that the bureau is tracking, monitoring and measuring that relates to children and youth with special health care needs and their families. One of the core performance measures is that youth with special health care needs will receive the services necessary to transition to adult life including adult health-care, work and independence. As Wendy mentioned, this also is an activity that we are undertaking for the new freedom initiative that is to remove barriers and increase full inclusion in the community for people with disabilities. As most of you know we have had a national survey for children and youth with special health care needs. It indicated that 12.8% of children and youth in our nation have special health care needs. And of that 15 .8% of children with special health care needs are 12 to 17 years of age. The survey did not address the needs of youth 18 and older. We think this was a barrier to really getting a lot of information. What we did find out was that in terms of prevalence of special health care needs 16.6% were Native American or Alaska native children, 15.1% were children and youth of mixed race, 13% were non-Hispanic white, and non-Hispanic black children, 9.6% were native Hawaiian and/or Pacific Islander children and 8.6% were Hispanic.
When we talk about our national survey we were looking at youth with special health care needs and the services they receive that are necessary to support their transition to adulthood. The survey contained two questions related to this goal. One was associated with teens receiving guidance and support in the transition to adult healthcare, and the other addressed teens receiving vocational and career training to prepare for an adult job. Unfortunately the survey results show that only 6% of teens with special health care needs feel as though they are meeting those goals or they are receiving services. On this call today we are going to discuss some experiences from a the perspective of a young adult with special needs, as well as those of family members of youth or young adults with special needs and then examine the implications for the provider. Wendy?
Wendy: Thanks Diana. It is time to introduce our guest speakers. Our first speaker is Elizabeth Guerrero from the National Youth Leadership Network. We also have Felecia Jordan DaSilva, an NCCC National Advisory Committee Member and family member, advocate and trainer. Patti Hackett, is co-director and project lead of the Healthy and Ready to Work National Center. And we also have Betty Pressler, a nurse practitioner at Shriner’s Hospital and a consultant to Healthy and Ready to Work.
Welcome everyone. Elizabeth the first set of questions is for you. In your family and community culture how do you know when someone is considered an adult?
Elizabeth: Based on my experience I think that for my family and my community culture they look at someone as an adult when they get married. I just got married a few months ago and I can see how some people treat me more like an adult and not a little kid. I would have to say once someone gets married. Or moves out of the house. Because in my culture people stay with their parents until they get married. And they get treated differently when they move out or get married.
Wendy: How important is it to you to be independent and on your own?
Elizabeth: I think it is very important to be independent. Because everyone says I want independence. It is important to have the knowledge that you can do things on your own. However it is important also to have people that back you up and give you space but are willing to help you if you ask for it.
Wendy: You're talking about a support system?
Wendy: When you think back a little bit, in what ways if any, do you think that your illness or disability affected you're becoming an independent adult as seen by your family or your culture?
Elizabeth: I think it was a bit harder for me to become more independent because of the Latino culture. I can see that with my family and friends they were very overprotective with me. And that prevented me from being a bit more independent on my own. If I needed something they would say “I will do it for you” or they would tell me “you cannot do that”. I think that my disability and my health condition really did prevent me a little bit from being as independent as I am now.
Wendy: You talked about being protected. We had some discussion about this before. Would you say that somehow those feelings were related to how people might have perceived you? Or their perception of the disability?
Elizabeth: I think it would be the way that they saw the disability because in Mexico and in a lot of Latin America they do not see the disability as a disability. When someone has a disability at least in Mexico they say, “oh you poor thing, you are sick”. They don't look at it as a disability. With me growing up with a health condition I was always sick. They were always trying to care for me. It was just caring for me but they did it in a way that it did not let me grow as much as I could have.
Wendy: You just hit on something kind of critical. What do you think were some of the things that helped you to grow in terms of taking on that role of being independent as a young adult?
Elizabeth: I think that goes to another question. I know that if my parents would have been more active in knowing about disabilities and maybe even if other family members would have known how to work with me or how to talk to me, that would have been helpful. A lot of times because they didn’t know enough about the disability or health condition, they were just always overprotective. And it didn't help me at all. Especially in school it was not helpful to have people hanging onto me.
Wendy: My last piece I will ask you. How about when you started getting your feet wet or getting some experiences? You mentioned to me before when you were talking about getting your feet wet in the disability community, how might that have helped you?
Elizabeth: It helped a lot. I started seeing that there were services and programs out there that could benefit not only me but also other people with disabilities so I started getting more involved with it. Also because my mother also has a disability I was looking at it from this perspective. If I can learn things that could benefit both of us than I can find things that can benefit other people and help other people. So when I started learning about this I got really interested on the ways on how I could educate others about disabilities. So that opens my mind a lot.
Wendy: Thank you. Diana?
Diana: Elizabeth, would you like to share with us what your special healthcare need is? And then, the doctors, nurses, therapists and other professionals that you saw what did they do or not do to support you in becoming an independent adult? And what did they do to support you or not support you into the adult health care system?
Elizabeth: My health care issue is that I have a brain tumor. It is right by the brain and the spinal cord. It has been there since I was a baby. And the question was?
Diana: About all of the doctors and nurses that you saw, what did they do or not do to support you in being independent?
Elizabeth: I personally don't feel that they did anything for me to become more independent. My healthcare transition was really bad. I don't feel that they did a whole lot for me in that perspective except for this one doctor that I had. He was a specialty doctor and he would always call me up and say, ”you have to take your medicine because if not then this or that will happen”. And I hated him calling me, but after I got used to him calling me it felt good to have someone call and checkup on me and actually care about me and taking care of me. That also helped me to remember to take my medication. And now that he has left and I don't know where he is I can remember when he would call me to take my medicine. I think he was the only doctor that I've had that has helped me throughout my whole medical thing.
Diana: In terms of your health care, what do you think systems or doctors could do to make the transition to adult health care a more smooth process?
Elizabeth: I will tell you a little bit about my transition real quick. For my transition I think I was 18. I can’t remember exactly how old. But I had a doctor who started to talk to me about transitioning. And I was fine with that. We were talking about at that time because it was really time to transition. One time I was not feeling good and I made an appointment. When I arrived, expecting to see my doctor, I was told, “Oh they did not tell you that he left?” So they said it's time for you to go see an adult doctor. And they just threw me into some adult clinic and made me make my own appointments and do all this stuff. I had no idea what was going on. And when I went to go meet my doctor she had no idea who I was. She had never read my medical records or my case file. She wanted to treat me for something and she did not know what was wrong with me.
To answer the question I think doctors just need to get more involved with the youth and families before the transition. And get to know them so that way when they get ready for that point of transition they know what is going to be the best for that youth. And what will work best for the doctor and which one will be better. I think that is the most important issue that they know the youth. Another part I think would be to start early. When the doctors actually talk with the youth and say, “you're starting to get ready for transition” then bring in an adult doctor that the doctor thinks would be perfect for that youth. Someone who is youth friendly and can help them grow. That way, during those few months or a year they can both work with that youth so when the youth actually transitions to the new doctor that youth is not asking who are you and what are you going to do to me? That way the youth and the new doctor build up a relationship as well.
Diana: Is there anything that they could have done to make things easier for you being a Latina?
Elizabeth: I think they could have helped with translation. The reason being I know that there were some people who spoke Spanish, some doctors. My parents, the only one that went with me was my mom, she does speak English but she always has an excuse that she does not speak English. But she does speak English to some of my doctors. But I know a lot of times we didn't fully understand what was going on and that was because of the language barrier. So I know that they could have done something better to work with my family being Latino and English wasn't their first language. I think they could have done something much better to work with us like maybe getting us an interpreter. Someone that could really help us understand what was going on. Or maybe even a doctor that spoke Spanish. And I think that would've been very important.
Diana: Thank you Elizabeth. Wendy?
Wendy: Last question. In your opinion what might family members or parents do to encourage or support youth or young adults with disabilities or special healthcare needs to become independent or to maintain their independence?
Elizabeth: I think that parents should be more involved with the youth, and not just be all over them. But be more involved in the disability area or the healthcare area because if they are educated they can help out more. I know that my parents with my experience they were not very educated. They had no clue, they still do not have a clue. I feel that they support me but not really because they don't know what to do. They are behind me but they don't know what to do. I think that if parents get more involved and more educated on the issues that are related to their children then, I think they can do a better job in encouraging and supporting them in their independence. I think that would be the best way to go.
Wendy: Thank you Elizabeth. Let's go to Felecia. Tell us a couple of sentences about yourself and your kids.
Felecia: I am Felecia Jordan DaSilva from Detroit Michigan. I have three young adults. One is 20 1⁄2, 17 1⁄2 and one is16. My 17 1/2-year-old son has severe to moderate asthma. He takes three or four different medications on a daily basis. My youngest daughter has cerebral palsy. She suffered a stroke at birth and as a result of having my youngest daughter I got very involved in finding out about all of her needs both health and education wise. So I got involved with a lot of advocacy programs, training programs and family support programs to help support my family and find information. I ended up supporting other families not only in Detroit but also across Michigan and also across the country.
Diana: For your family how did you determine when it was time for your children to become involved in decision-making ?
Felecia: My son at 17 1/2 he does not want to participate. I constantly work with him. My youngest daughter she was probably around eight when she started asking a lot of questions about her health because she requires medical equipment. She uses a motorized wheelchair and she started using that at about eight years of age. She was using a manual chair before that. She had a lot of questions about what the doctor said. At that point I realized that I needed to start informing her about what was going on with her health, and explain to her what the doctors were talking about.
Diana: With your son is he taking responsibility for his medication?
Felecia: That has been a struggle for my family. He does at times. I’m trying to get him to understand if he takes his medication on a regular basis he can do anything and everything that he wants to do. His asthma does not hinder what he needs to do for himself. The point is not taking his medicine regularly. He gets better at times but I think it is just a matter of not wanting to deal with the medication and having to carry those things around on a regular basis.
Diana: Some of that is typical behavior for a lot of young people. How important is it to you based upon your family's culture for your children to become independent adults?
Felecia: It is very important for our family. I was raised; My brother and I were raised, to be very independent adults. When I started having children I kept that same philosophy of making them as independent as possible even with my youngest two having disabilities. Trying to teach them at an early age how important it is to take their medicine and to take care of themselves. And also to be aware of what their bodies are telling them about themselves so they can do a good job of taking care of their health. Making sure that they are productive adults in their community and making sure that they have the education that they need to support them in being independent adults has been very important to our family.
Diana: In your culture, what is the role of family and who you consider to be family in supporting your children with disabilities?
Felecia: We have a small nuclear family (myself and my three children included) to some extent. But it’s me, my dad, my stepmother, my brother and I have four stepbrothers and a stepsister. There are a lot of folks that I’ve brought in as extended family to support what has to be done because I travel a lot. I have to have a lot of support to make sure that all things get taken care of when I’m away from home. We have pulled in a lot of community folks from our church to make sure that things run smoothly.
Diana: Thank you.
Wendy: Felecia? What aspects of the health, education and other community systems help or, in your opinion, hinder your youth in achieving independence?
Felecia: What has helped our family is having people in the health and also educational arenas understand what our hopes and dreams are (for all of my kids). Even though my two youngest have disabilities or special needs I still expect the same thing from them, to be productive citizens in their community. Having health and education professionals understanding that (family hopes, dreams and commitment to independence) and also assisting me to learn about resources and needed supports has been very helpful. Having teachers and doctors that understand their field of work and have been able to bring me in as a full partner in the decision-making process; making sure that I had all the information that I needed in order to make an informed decision about care or education.
Our process was hindered by those who did not want to fully inform us. My daughter was five weeks old, when I first learned that she had suffered a stroke. The health professionals knew in the beginning. If I had known at the time of birth what had happened I would've made a lot of different medical decisions about her health care. Her pediatrician was also not contacted at the time of her birth. And I know he would've made some different healthcare decisions about her also. I think not having all the information there to support her medically I think that hindered us. Some people do not allow us to be partners in the process because of how they were used to working with families. We also did not have people who wanted to allow the time that was necessary to do a good care plan and also educational plans for her. I spend at least 12 hours each year over the course of three or four days writing an individualized educational plan for her to ensure that we cover all of our bases for her educational needs. And we do a thorough job now of involving her which takes some time. I like for people to allow some time and that doesn't always happen.
I think the other thing that is hindering us right now, because we are in the middle of a transition medically for my son and also for my daughter, is changing clinics. That has been a hindrance because we have to get used to new doctors and change medical forms and make sure that all the meds are covered and that kind of thing. My daughter just went to a new high school so we are getting used to folks understanding what our goals are and what our dreams are for her. And making sure that she has all of her supports in place as opposed to them being ready for her when she first arrives.
Diana: Felicia you touched on this a bit. When you have been successful with your children in terms of helping them or enabling them to assume responsibility for their medical care what do you think were your successful strategies?
Felecia: I think having professionals that engaged in conversations with them personally. A lot of times we meet with professionals and they always direct questions to me. I taught my kids to be aware of their bodies and to know themselves personally. A lot of those questions they can answer a lot clearer than I can. And when professionals engage them in a conversation they get more information out of them, even things that I am not aware of. We get a truer picture of what the care treatment or the educational treatment really should look like. As opposed to just asking me because I don't have all the pieces. Even though I am their mom I still don't have all of the personal pieces.
Diana: Do you have any bits of wisdom for us in terms of providers and systems and addressing the needs of culturally diverse youth and young adults?
Felecia: I think just like Elizabeth talked about, the point is to start early and to build relationships. I think waiting until they are 15, 16 or 17 years old if they have special needs and disabilities it is not soon enough because they have to get used to getting into the routine of doing their meds by themselves. Or doing other care treatments or being able to learn how to talk to the doctor. So I feel that making sure that there is time allotted for doctors to take that extra time to have those kinds of conversations with youth and to build relationships is crucial. And you can get a lot of that information out of them. So they can take care of themselves and be self-sufficient.
Diana: Patti, did you have anything that you wanted to add on any of those questions?
Patti: I would like to echo the thought of starting early. The important thing is youth need to make healthcare decisions. And that takes a while to practice. As early as four they can decide what hand their IV will go into. They can in elementary school decide what day of the week their appointment could be. They can learn how to call-in their prescriptions. They can learn how to do their co-pays. And simple things such as presenting their insurance card and keeping it in their wallet is really important. The other thing is communicating with physicians. One thing I would encourage my son and also my students who have special needs was to develop a couple of questions at each visit. So they would be comfortable and also the physician would be comfortable. As parents we often worry are we going to die before our kids and have we prepared our kids or our significant others to take on our health information? What happened in our life was the physician died. So it was important to have a good medical summary portable at the house so that when we would introduce ourselves to a new physician we were capable and confident to provide that information. You have to plan for the unexpected.
Diana: Thank you. Wendy?
Wendy: Thanks Patty. Betty and Patti, I also want you to feel free to respond to some of the questions that are coming now in terms of providers.
Patti: Can I say one more thing on families? Sometimes there are families from different cultures that have trouble accepting the disability. I know that in our family my son had an aunt who had cerebral palsy. There was no expectation there was no future planning. There was very little done for her. On my side Glenn was the first one who was significantly disabled. It was not helpful. So there will be times when the family member support system is not there. It would be helpful if physicians could also encourage a circle of support of people who will be there. For us it was an adult mentor who happened to have a similar type of disability. Don't think of it as hopeless there is always someone around. Sometimes you have to make that connection.
Wendy: Thank you.
Betty? As a provider as a nurse practitioner in your case how do you work with families and youths to understand their particular vision of independence?
Betty: I think the most important thing is for us to acknowledge our own limitations in understanding where a family is coming from both from an individual and personal perspective and also from a cultural perspective. And to not be ashamed or embarrassed that we can’t hypothesize because truly we can’t. We can only understand that for ourselves. To start from that level of acknowledging limitations I think is the first important step. I think the second thing is to communicate that to the family and your sincere desire to learn from them. What does that mean to that individual family and within that culture to have a child who has been diagnosed with a chronic condition or disability? What are their hopes and dreams for their future and what are the concerns for the future? It is important to be a willing learner and to listen when families and youth talk to us and truly incorporate their expectations, preferences and needs into our model of clinical practice and clinical practice activities. What are those expectations? What are those needs and what are those concerns? And be responsive to them in small ways every time we have an encounter or every time we pick up the phone and call. As was being discussed earlier prompt a family member or youth or check on them. That is a way to show you care. Also incorporate into those encounters that you are listening and you are accommodating your plan of care based on what has been said to you. I think two other things here. Make sure that we practice every day from a family centered and culturally competent perspective that we internalize those values in all of our clinical encounters. I think as long as we demonstrate to families and youths that we truly respect them as individuals we respect their perspective we honor their central role as decision makers. And that we’re willing to listen and learn and partner, then we won’t go too far wrong even if we are not experts in all of the information about what is important to the many cultures that are represented in our very diverse population. I think that is the place that I would like to start, just with a foundation of values framework, if you want to call it that.
Then I think also, I have heard Patti say many times that we have to let families know that there is a future at the time of diagnosis or when prognosis is discussed. It should always be within a framework of hope and of the future. We need in small steps maybe not all at once, to plant seeds of hope that point to an optimal future not from our perspective but from the families and the youths chosen perspective. If you don’t know, it was said earlier on this conversation if you don’t know about the resources that are out there to help you have a future how do you know what you can hope and dream for? I think it has been said many times already to start early. This is a discussion that starts as soon as the diagnosis is made or at birth in terms of giving information, listening and learning together. Really being partners across that developmental continuum. I think we have to attend to some key concepts in our intervention with families. Families have said that they really want help from the physician, practitioners with healthcare management both the health promotion aspect but also the health condition management. There is a tremendous amount of information that needs to be shared to support families from the get-go. Families can share information with their children, as can the healthcare providers. Sort of work together as a team in sharing that healthcare management information. Families tell us that it is extremely important to have someone help them with the care coordination. To get plugged into the system and learn how to work the system. In our encounters in promoting independence we need to attend to insuring that people have access to information and resources and learn how to work all of the many systems both within health, within the health payment system, and also the multiple support systems across the developmental continuum. That is an enormous piece that people have to know about and have to know how to make it work for them. Even when systems are broken we need to know how to make them work. I think a third thing here is to always support optimal growth and development. To be looking at what can the child do now, what would the family like for them to learn to do next, what is important in terms of that child’s ability to participate in the family, to participate in school, to take care of themselves? What really is the next developmental step for that family? I can’t emphasize enough some points that have been made earlier about the importance of things going well at school and social inclusion and community participation that we just always look at those issues as well as the independence and self care.
Another and perhaps the final one at least for the moment, is to help families and youth prepare for the future. I really started with that, let families know there is a future and start early. But there comes a point then where we really need to give some very concrete help. Planning occurs in small steps. That is the starting early point. As they move into those transition years, there is another whole system out there of services and resources that families need very specific information about so that they can pick and choose the path that they and their youth would like to follow. And the youth needs that information to get also, so that there can be a discussion at home about here are opportunities and here are options and what do we choose here? I think that lack of that information and education really puts the youth and the family at a serious disadvantage.
Back to care coordination, I think that the transition years are years where we really have to rev up our care coordination activities and watch what’s happening as they go through those critical years as the youth negotiates the school system and to think about work and to think about adult healthcare and to think about independent living and transportation and on and on goes the list. It can be overwhelming. I know anytime you have adolescents in the house and you are thinking about the future it’s overwhelming. Then you have additional challenges that occur when that youth has a special healthcare need or a disability. I think I’ve answered number one and Patti, you feel free to chime in.
Diana: In terms of respecting family values and particularly if those values might be different from yours, what are some of the approaches that you use to support your youth in achieving their own vision while you may or may not understand it or if you strive to understand the family values.
Betty: Patti, why don’t you start on this one?
Patti: There are two parts of the question, Diana. I think the first one is how do families let a person who might not be aware of certain beliefs – at a recent physician visit there was a question on intake form and I thought it was really good. Are there religious beliefs or cultural beliefs that you have that I need to know as your doctor and be respectful of? And I thought, how inviting, finally someone is asking. Of course there was not a whole lot of room but it did allow the opportunity for a person to say this is where our belief system is or when you get to a point where it does conflict I need to have the opportunity to share that with you.
There is a second part. What happens in a culture like what Elizabeth was talking about when families have a certain belief system from tradition and it may differ from this new youth who has been around other cultures and is developing their own definition of what their new cultural feelings are? That is where we have to walk a polite dance but still encourage. As a teacher sometimes my students would want to do things that their parents had never thought to let them do. As a teacher my role was to bring successful people to engage a conversation to show what the possibilities were. And to help the families work out something that was comfortable for them. Not to push, not to prod, but just to broaden horizons. So I would say intake form and sharing success.
Diana: Thank you. Betty?
Betty: I would add just a little bit to that. They have been several surveys of youth saying what is important to you particularly in relationship to health. Staying healthy, knowing what to do in an emergency, knowing what can happen if their condition gets worse and knowing that they can find adult healthcare and get their healthcare funded is very important. I want to emphasize just for a moment that youth are very concerned about and interested in learning about how to manage their health. We are at the Healthy and Ready to Work National Center beginning to think through what youth centric care looks like. Honoring family centered care but then checking with the family in terms of when it is appropriate within their own family values and cultures to begin that transfer? And it will vary based on family and based on culture from maybe the school-age years to get started to maybe not until the early or mid-teen years. We certainly need to listen to families. But I think it is important for the youth to be brought into the team and partner with the family and the other providers to co-manage for a period of time before they actually become the manager. Ultimately depending on family choice and the youth choice and there is balance that we have to achieve we would really like for all youth to become their team leaders to the greatest extent possible. Knowledge about the condition so if the youth is going to take that responsibility for being the team leader that complete and unbiased information has to be shared with them. The point that was made about just don't talk to Mom and Dad but talk to the youth is very important. I certainly agree with that. That is very critical to the youth understanding that they really are in charge. There comes a time when there needs to be some private time with the youth, checking with the family and with the youth as well about when they want that to start is important as well. Then we want to promote youth to youth mentoring and support just like we do Parent-to-Parent because youth gain ideas and strength from one another just as families do. And then when we are dealing with youth to look at how can we create an environment but also a practice encounter that really honors and respects the fact that that child is well on their way to becoming a young adult. So we do not keep doing the same old things in the same old ways. I think that it again gets back to listening. And letting each family and youth decide together when they are ready for the youth to begin taking on increasing responsibilities and also when they want the provider to do what to facilitate that? You lay out the menu of options and here are some of the things we need to think about in the future. Because your young person is growing up and let's decide together when you think it is time for an office visit without Mom or Dad. Or when you would like for your young person or if you would like for your young person to know how the disability may affect sexuality for example. At what point does the family want that information shared? And that will depend on the youth’s interests as well. So there are many things that need to be validated between the provider and the family and the youth. And this is just teamwork.
Diana: Thank you. Wendy?
Wendy: I have a question and I will put it out to I guess everyone that’s here. When you think about what needs to be in place in order for a transition to adult healthcare to be successful what do you feel is needed at a systems level?
When you think about the process of transitioning to adult healthcare what do you think needs to be in place at a system's level for successful transition to adult healthcare?
Patti: I guess there are two things that come to mind. One is adult physicians who are eager to receive our young adults. And sometimes it takes a little time to find a personality match and also to find a knowledge match. And the other consideration is healthcare insurance. Many times families are in a panic just before their child turns 18 or 19 years old and they become an adult. What happens and how will this jeopardize or enhance their child's health condition? I would love to see the system allow insurance in private areas to go up to the age of 25 and then let's get flexible and creative after that. But at least have the chance to do things between 18 and 25 to configure a system that would be helpful.
Betty: I think that another thing that is important to have what we would call an informed and activated consumer. For that youth to hit the adult healthcare system and to understand that there is a real paradigm shift between pediatric and adult care. On the adult side there is definitely some system change with more responsibility and self-management required. So to make sure that we have that young person prepared to intercept that youth friendly adult provider that they are going to get referred to. That is extremely important.
Diana: I think it is important that the adult healthcare system kind of understand that a lot of our families have really been partners in decision-making. A lot of the youth have been making decisions on their own, and sometimes when they hit adult healthcare providers that is seen as being aggressive or not really compliant or not listening to the provider. I think the paradigm shift is not only for an informed consumer but also for the some of the adult providers that are getting some advocates into the system.
Betty: That is wonderful. Hopefully that will change the system and that paradigm will shift if it has not ready.
Wendy: Elizabeth or Felecia, do either of you have something to add?
Felecia: I think the system could really be supportive in helping families to make that transition of letting their young adult make those decisions. My daughter and her developmental doctor made a decision about one of her care treatments. I had not spoken with this doctor for quite some time about this. When the time came to make the decision her developmental doctor let her make the final decision. I had a real hard time with that because that was something that I was working on for about three years. And it got taken away from me. But later I got a grip on it and realized that this is her body and there are some things that I have to accept to some extent until it gets critical and then I can step in and make some critical decisions. I think being able to have a system that assists families in making that transition and helping their young adults make some of those decisions for themselves so that they get comfortable and family members are comfortable is a must.
Diana: Before we go to the questions Elizabeth, do you have anything that you want to add?
Elizabeth: I just wanted to mention that maybe they can look at the cultural issues within the family. I think that is very important especially with the Latinos because we have really different beliefs and cultural ideas. I think that would be very important and very helpful in helping to transition and helping work with youth and their families in order to get the best services possible.
Diana: Thank you. And in your instance the degree of acculturation on your part and finding out a lot of things on your own so we can commend you Elizabeth. Before we go, Patti would you like to give the Healthy and Ready to Work web site address?
Patti: It is www. HRTW.org The HRT stands for Healthy and Ready to Work
Diana: Thank you. Wendy?
Wendy: Hello, call operator?
This is the operator. The instructions for the question-and-answer session are as follows. If you’re interested in asking a question please hit 01 on your phone. If the answer to your question has already come up or if you decide that you would not like to ask the question any longer than please hit 02. I will prompt you when it is your question. Please be aware that because of pronunciation your name may sound a little different. I will try hard to pronounce it correctly.
Please go ahead and hit 01 if you have a question.
Suzanne: This is Suzanne I would like to ask a question to folks. Betty you had talked about one of our goals is to get the youth as head of the team. Obviously I think that is an important goal. When we think of things within the cultural context I think there are some cultures where important decision making processes and authority would not be vested with someone of that generation. Or it might not be within the individual family. There might be some elders in the group whom might need to be involved with important decisions or have some influence on that. I am wondering what experience you or anyone else has had with trying to implement the model of transition involving the youth but trying to do that within a cultural context where there are those important beliefs.
Betty: Suzanne, from my own perspective and I’m sorry if I didn’t make that clear, this is a decision that is made in that partnership with the youth and the family and the provider. And the family is often the extended family. Mom and Dad often go home and consult. There are many variations there. You are perfectly right it may be that the young person will be supported to co-manage but not to independently manage until they have reached what is supported as that transition landmark such as marriage or moving away from the home. How I do that in terms of my clinical practice is I just ask and have a very frank and open conversation with the family and with the young person and try to do it in a very sensitive way. In terms of what are your wishes? In terms of how we proceed? And families are usually very forthright in sharing this is the way we would like to do it.
Suzanne: I think you can learn from mistakes. My biggest lesson was when José's grandfather came in to talk to me and I was not sensitive because I did not know. And we had a very open discussion in which I found out things that I could do better. I think as a provider you need to be willing to make changes. I things you're not even aware that you are not doing things the right way.
Roslyn: This is Roslyn. One of the questions that I had I wanted to add on to something that Suzanne and Betty were talking about. I think it is important that you have that talk with the family. And really understand what is in the perimeter of what they felt comfortable with handing over to the doctor and what they feel that their child or young adult is ready to handle particularly for some people in issues of sexuality. When you talk about those kinds of things there are cultural and religious beliefs that really may go overboard for some families. I'm sure a lot of doctors that mean well would like to explain this to youths and oftentimes want to do it alone with young people. And I think that they really need to have a sense of where the family is with that kind of conversation, the value of that conversation and who the family perceives should take on that role. Many families don't want that conversation to happen outside of the family realm. And I think that is the really important one because of the special health care needs and disabilities issues oftentimes doctors may want to take a step ahead in that. I think that is something to really search around with families.
Betty: That is a good point. I don't know if any of you have had the chance to read the suggested readings. In the article, Understanding The Role of the Healthcare Providers during Transition of Adolescence, sexuality just across that survey that was done in Oregon was one that provider's think is very important and rated more highly than families did in terms of support during transition. Providers saw having the conversation about sexuality as a higher need than families did. I think that regardless it is really a family choice. It gets back to family centered care. Families have their own cultural and religious beliefs. And you are right that it may be that the conversation needs to come from someone within the family.
Diana: Do we have any other questions?
Operator: I would remind the participants to hit 01 if you would like to ask a question.
Participant Andy Penziner the question is yours.
Andy: Question for everyone but especially for Elizabeth and Felecia. It is kind of a general question. It is one that I think about whenever I am in a gathering of both providers and families and consumers of services. For a number of years we have been asking families and consumers to help us with developing better systems of care and in this case specifically adolescent transition to adult services and independence. But my question is general. Sometimes I get the feeling that we as providers invite the input but don't really act on the input. I think we're polite about receiving it and I think on occasion we do make some small changes. But I think we are really reluctant to make the big changes. And sometimes we come up with excuses why that would not be possible. Clearly I'm asking for your honest feelings here about whether the provider community does a good job of taking to heart the input of family members and consumers when they make suggestions about how to make services better. You won't offend me or anyone else with honest answers.
Elizabeth: I personally don't feel that they (providers) actually take patient input into consideration. Or maybe not completely, they may take the easiest part. But I don’t feel that they really look at the things that are being needed. Why? Because they are the hardest parts to get to. If you're asking for suggestions my suggestion would be act upon it no matter how difficult it may be. If it will make your job better and easier then I think you should follow up with that.
Felecia: This is Felicia. I used to actually work with the Title V program here in Michigan. At one point in the program a lot of my daughter's health providers actually used me as a contact person for when they got into those kinds of situations where they did not have the time or the resources to connect families to wherever they needed to go but then knew what the families needed to follow up on and they had a phone number which was mine or another parent that they knew could help connect that family. There's only so much time allotted to providers to do some pieces and once you do the main piece that you have to do it doesn't leave a lot of time for you to do those other critical pieces that really impact a child or young adult’s health care. I think having someone else in your community that you can refer them to is really helpful. And then also having a team of providers that truly problem solve together around a child's health care so that everyone is actually taking a part in making sure that those critical pieces that impact the health care treatment plan being delivered have been taken care of in a friendly way.
Patti: This is Patti. I think they opportunity to have a phone number to be able to call into. Because there are times during clinic visits it is hard to say I have a few suggestions. Title V Programs in the state of Kentucky does have such numbers in which you can record things that are working and things that need to be improved. I would encourage the providers to periodically say is there anything we could do to make this easier? Even for the families that are veterans and the kids that look like they are in good shape it would be nice to check-in.
Betty: This is Betty. I work at Shriner’s Hospital for Children. I know that family input is so valued both on an individual level and on a systems level. Before we have any team meetings the families and the kids are right there and leading and guiding our inter-disciplinary team discussions about what to do. I think that systems really are trying. I don't know that they are perfect yet. There are holes in the bucket where on an individual level it breaks down. But I don't think that the Shriner's system is unique. I think that most systems are dead on serious about trying to do everything they can at a micro and macro level to come in alignment with family centered culturally sensitive care.
Wendy: Are there additional questions?
Operator: Robert Morris the question is yours.
Robert: Thank you. This is a question for anyone to answer. Fairly early on there was a comment made that it is important to motivate parents to become involved in understanding their child's chronic conditions and the various parts that go with that. Any suggestions on how to do that? To actually get parents I think all of us try but I don't think all we are as successful as we could be.
Betty: Something that I found helpful is to engage families with the care plan. If you start that conversation or begin with an assessment of their unmet needs and start that care plan with what we going to do about whatever the priority is? Begin to show them in a unique one-on-one clinical situation with them here is what we can do from a team perspective or from a systems perspective to work with you to address these needs and concerns. As you get those major priorities taken care of because it sometimes families are truly in a crisis mode and it is difficult to step back and take a long view and do some big picture planning. Especially when you're struggling to live on a day-to-day basis. But then to use that care plan and introduce once we're passed that crisis mode what is it that you would like to understand better about your child's health condition? At every encounter build in that educational piece into the plan of care and to give families information in whatever way is most appropriate for them. Whether it is verbally or something that is written that is culturally competent in terms of language. I think that is important. I love engaging families with a simple action care plan. I do that with almost every encounter. No matter what the issues are.
Diana: Elizabeth? What do you think would have been helpful to engage your mom or your family more?
Elizabeth: I think trying to get a better idea of what that culture is like. Because I think culture plays a big part in all of this. If someone comes from a Latino background they don't have the same issues from an American background. So you know how to communicate with that person better. If you communicate with that person more you can learn how to work with that family and that youth more efficiently. I think it is just looking at the culture and getting to know them.
Diana: As you think about it is there one specific thing that your doctor could have done better? You say communicate more but is there a specific kind of example?
Elizabeth: I can't think of one right now. There are a lot of different things that could be really efficient. Maybe one example would be, never mind.
Wendy: This is Wendy. Earlier when you were talking about maybe an interpreter it occurred to me and you said your mom does speak English but sometimes she's more comfortable speaking in Spanish. Maybe not just the interpreter but a cultural broker who can bridge the divide between the provider to understand the cultural perspective of the family member from a particular background or a particular community. And to assist the family in understanding the system or the way that things go in terms of health care.
Diana: That sounds good Wendy. Tell us about what a cultural broker is.
Wendy: A cultural broker is an individual who would have knowledge, experience, could be someone who has the language background but also the knowledge and the cultural experience in a culture or several cultures and the mainstream culture that the family is trying to navigate in. That could be in the educational system it could be in the health care system, it could be in the child welfare system. A cultural broker is the person who would be able to make that bridge between the family or community and the other system that they are trying to access.
Elizabeth: I think that would be a good idea. I think that would have been very helpful in my experience. If we would've had someone there that would've worked with us than I think things would have gone a lot smoother.
Felecia: This is Felecia. I think having that care plan is very helpful because if you have a broker then you can, even if the broker doesn't come to that visit with you, you can always take that care plan back to the broker and have them go over it with you. So you get a better understanding. There may be some things in the plan that you need to go back to your physician or care provider and have an additional conversation to clarify concerns. So you follow and maintain the health care of the individual.
Wendy: Operator, are there any other questions?
Operator: You do not have any other questions at this point.
Wendy: With 10 minutes left in this particular call I want to take the opportunity to thank all of the people who are participants and guest speakers. Patti Hackett, Betty Pressler, Elizabeth Guerrero, Felecia Jordan DaSilva, my co-facilitator Diana Denboba and my colleagues that are here sitting with me. Suzanne Bronheim, Roz German, and Isabella Lorenzo Huber.
Please take the time to complete the evaluation form. It helps us in planning and structuring upcoming calls and provides us with a wealth of information. I encourage you to take the time to respond back. And I would also like to thank many of you who have registered for future calls. The next couple of calls already have 20 to 30 pre-registrants. Just to remind you that on January 29 we will have the second topical call of the call series. The topic for the second call will focus on cultural consideration for early and continuing screening. Again, thank you to all of you for your participation in this call. The faculty and staff of the NCCC look forward to spending additional time with you in the future.
Diana do you have a closing remark?
Diana: Yes. I would like to thank all of the speakers. I think you have been tremendous. I would also like to thank people who took the time to call in. We have Ontario, Canada. We have hospitals, Title V Programs, family resource centers, advocacy groups, a wide variety of places from Arizona to Wisconsin to Missouri. So we really appreciate that. Again there are resources on the NCCC web site, on the Healthy and Ready to Work web site, family voices, CASA which is kids as self advocates. They have a web site. In addition the American Academy of Pediatrics has a group of catch programs, which is community access to child health. And by them being community-based programs supporting pediatricians you may find that you can get some ideas from practicing pediatricians in communities. And there is a consensus statement on healthcare transition for young adults with special health care needs that is in the American Academy of Pediatrics publication September 2003, Volume 112 #3, part two of two. It is a supplement.
Wendy: One last final note. That is I forgot to thank Viable Technologies. Which has been on the line with us since the start of the call. They are preparing a transcript which is actually available in real-time. The call transcript will be posted to the NCCC web site for those of you who might like to download it and for those who were unable to participate in the call. Thank you again for participating and we look forward to your participation for the January 29th call.