Share Public Health Podcast: Tackling Equity, People with Disabilities

Season 1 Episode 20

Hannah Shultz Welcome to Share Public Health, the Midwestern Public Health Training Center’s podcast connecting you to public health topics, issues, and colleagues throughout our region and the country, highlighting that we all share in public health. Thank you for tuning into this 10-part series on health equity. Over the course of this series, we will discuss a broad range of topics connected to health equity. For additional resources and information, be sure to check the podcast notes or visit mphtc.org/healthequity.

Derrick Willis Hello, my name is Derrick Willis. I am the director of Iowa’s University Center for Excellence and Developmental Disabilities and I am pleased to be a part of this health equity podcast series. Today, we’re going to focus on how the presence of a disability or special health care need can impact quality of life and access to healthcare. We will identify some critical public health topics and share some best practices for serving individuals with special healthcare needs. Joining me today is Cheryll Jones, pediatric nurse practitioner from Child Health Specialty Clinic’s Regional Center in Ottumwa, Iowa. Also, we have Alejandra Escoto, Child Health Specialty Clinic Title V program coordinator. We also have Mike Hoenig, a program coordinator at the University of Iowa Center for Disabilities and Development, and Anne Crotty, a program coordinator at the University of Iowa Center for Disabilities and Development. Let’s begin by defining some key terms. The terms disability and special healthcare needs are not exclusive. Mike, can you tell us what is meant by a disability?

Mike Hoenig Absolutely. And thanks a lot for having me. This is really an exciting opportunity for all of us. So, I’d like to share a couple of different definitions. The first one being from the Americans with Disabilities Act of 1990. I’ll call that the ADA. It’s a long-term mental or physical impairment that substantially limits one or more major life activities. That can be anything from hearing to seeing to learning. It can also refer to performing daily tasks. Things like doing housework, driving, accessing health care. The second definition I’d like to share is from the World Health Organization and it’s a bit more of a functional definition. It talks about any condition that is impairing, limits activity, or restricts participation. So, when we talk about impairing, we’re talking about actual impairments in a person’s body structure or function. Or perhaps it can also be mental functioning, so it could be an intellectual disability or it could also be a mental illness. In terms of activity limitation, this is is similar to what we found in the ADA. So, more your hearing, seeing, walking, and so forth. Then in terms of participation restrictions, again this is social activities, recreational, and once again we’re looking at healthcare. So, similar definitions, but I would say that the World Health Organization’s is a bit more functional and really helps us to clarify what is meant by disability. Thanks Derrick, turning back to you.

Derrick Willis Thank you, Mike. Cheryll, I know you have served children with special healthcare needs throughout your distinguished career. Can you help us understand the term special healthcare needs?

Cheryll Jones Well, thanks Derrick, and like Mike, I’m honored to be part of this discussion today. I work with Child Health Specialty Clinics, which is a Title V program for children and youth with special healthcare needs in Iowa. We serve Iowa children and youth, birth through 21 years of age who have or are at risk of having a special health care need. By special health care need, we mean . . . Children or individuals with special healthcare needs actually require more than usual health and related services. These are children who need more than well-child visits, routine immunizations, routine check-ups. They need more intense and oftentimes more frequent health and related services. These can include chronic conditions, such as asthma or diabetes. It can include behavioral, mental health, or developmental disorders, things like attention deficit disorder or anxiety. It can include neurodevelopmental disorders such as autism, and also more complex medical conditions like spina bifida. So, these are children or individuals who have more complex health and actually social needs than individuals who do not have an associated health or developmental disability.

Derrick Willis Thank you Cheryll. So, I’d like to ask Anne to share some health disparities commonly experienced by individuals with disabilities and special health care needs.

Anne Crotty Thanks, Derrick. According to the Centers for Disease Control and Prevention, people with disabilities are more likely to smoke, be overweight and obese, and be physically inactive than people without disabilities. Children with special health care needs are less likely to have a usual source of primary care, which is known as medical home. People with disabilities are also more likely to delay or skip preventative care for many reasons beyond the lack of an accessible environment that we typically think of. It can sometimes be difficult to access facilities at all, even with the Americans with Disabilities Act. Many buildings are not compliant with this and lack either ramps to get in a building or doorways that are wide enough. The World Health Organization reports that people with disabilities are more than twice as likely to report finding health care provider skills inadequate, four times more likely to report being treated badly, and nearly three times more likely to report being denied health care altogether. Clinics may not have accessible equipment like exam tables for Pap smears or mammography machines which means that people with disabilities are often diagnosed at later stages or not at all. This impacts health and quality of life.

Derrick Willis Thanks, Anne. I guess as we look at the experiences of persons with disabilities in the U.S. today, I think it’s important that we look back at disability history, the progression of disability rights movements. Can we take a few minutes to talk about the history of treatment of people with disabilities and maybe, Mike, could you start us off?

Mike Hoenig Yeah, I’ll start off and then Cheryll, I really invite you to jump in – and really anyone – this is meant to be a dialogue. It’s not necessarily the most pleasant subject. I do think we need to – for those that may be unfamiliar with disability – we need to look back. There actually is documentation of treatment and attitudes for people with disabilities back to BC, but I think for purposes of this podcast, we’re going to start in the mid-1800s in the United States when large institutions of different shapes and size began to be built to warehouse people with disabilities. Along with that came terminology such as imbecile and saying idiot. We’re doing this podcast from Iowa City and I’ve recently gotten involved with the project where they’re really trying to understand the history of a place that at one time was called the Johnson County Poor Farm. It’s out on the west end of town. I had the chance to go visit and from about 1860 to 1880 people were actually housed in these jail cell-type structures. The people were eventually moved from those structures into other types of facilities. Just to give you a sense of what happened and with how primitive and how disgusting these places were – they were later used for livestock. So, we can see how people with disabilities were viewed. In the early 1900s, we began to see something – another movement – come into being and that was called the Eugenics Movement. This was an attempt to really create a master race, a cream-of-the-crop kind of thing. People with disabilities in one Indiana law were referred to as confirmed idiots and imbeciles. There was a Supreme Court ruling on this case and I’m going to read it just because I want people to see how blatant these attitudes were. It was a ruling issued by Justice Oliver Wendell Holmes and in part it read it is better for all the world, if instead of waiting to execute degenerate offspring for crime or to let them starve for their imbecility, society can prevent those who are manifestly unfit from continuing their kind. Three generations of imbeciles are enough. So, things slowly, fortunately began to change. After World War I, there was a move to provide rehabilitation. For the first time in history, funds were set aside to support individuals with disabilities – although that term was not used at the time – to go back to work. So, in the very early 1920s, we had funding for that purpose and that eventually became the program that we now know as vocational rehabilitation. The Social Security Act, which was signed by FDR in 1935, also was a step in the right direction because it did provide a means, ultimately, for some people who just are not able to work part-time or full-time because of their disability, to have access to some funds. So, along with the history, Derrick, you mentioned something called the disability rights movement. Many people today still may have heard of civil rights, women’s rights. Not a lot of people are familiar with the topic of disability rights or the term disability rights movement, but it definitely has existed and it continues to exist. I like to think that the first real move in that direction was the Organized Blindness Movement. Jacobus tenBroek, in the early 1920s, formed an organization called the California Council of the Blind, which later became the National Federation of the Blind. Like all organizations in this type of movement, it was the first organization that was led by the individuals who were the disenfranchised groups. In this case, people who are blind. So, moving on for a few years into the early 1930s, we see another organization forming. It was called the League for the Handicapped – and yes, in today’s terminology that wouldn’t be accepted, but keep in mind, that was over 70 years ago – and this was an organization primarily of people with physical disabilities who staged a lengthy protest, a 9-day sit-in, because the WPA, Works Progress Administration, designated the people with disabilities request for employment as “PH”, physically handicapped. So, they were singled out immediately and that obviously led to discrimination. Moving forward into the fifties, vets and people with disabilities began something called the barrier-free Movement, establishing standards for barrier-free buildings, which laid the groundwork for the Rehab Act and the ADA, which we’re going to talk about a little bit more, shortly. So, the last three-quarters of the century has really seen a boom in this area of the disability rights movement. Cheryll, I’m going to invite you to chime in here. There were a couple of organizations that all of us, I guess we kind of take for granted if we’ve been involved with disability rights or the disability movement at all, and those are The Arc, formerly the Association of Retarded Citizens, and Special Olympics. Cheryll, I know you’ve worked in the field for a while, and as we prepared for this, you had some thoughts about the importance of groups like The Arc getting started at a time when people with disabilities and their families really didn’t have access to a lot of support.

Cheryll Jones You know, thank you Mike. I’ve been a nurse for 50 years, a nurse practitioners for 42 years. I’ve worked with individuals with special needs much of my career. I’ve been in this regional center for 40-some years and I will tell you when I first started and the way I was educated, it was like if a child had a specific health problem you just told family what to do, you’re the expert and this is where you go. Well, I had had different experiences. I was sharing with this group that I had a cousin with severe disability, was unable to speak, she could walk but only with assistance. My aunt and uncle being actively involved in Arc of Iowa, back in the late 50s, early 60s, all they wanted was for their daughter to be able to go to school, and that wasn’t allowed. A child with that degree of disability could not go to school. My mom helped take care of her at home, but my aunt and uncle fought for that and finally got – she never got to go to school – but when other children were able to it was such a victory for them. So I see Arc of Iowa, that’s been my experience with the state Arc, has been so positive. The other thing – and I know Mike, you’re going to talk some about this – was Olmstead, the Olmstead ruling, and how it went about in Iowa, you know, it was to ensure that folks would be able to have access to services in their community, not what you were talking about with institutions and things, and we were fortunate in Iowa in early 2000, Governor Vilsack designated the Iowa Department of Human Services as a lead agency to respond to Olmstead. Then in 2003, he issued an executive order saying Iowa agencies have to identify barriers to community living posed by their policies and programs, and develop plans to remove them. So, those were important things. Now, are there still issues? Of course there are still some issues, but I do see movement. We’re not there yet, but there’s been movement. Then of course the other big one was for children, which was IDEA, which Mike will talk a little bit about too. But, after 40-some years in the field, I can see the difference for children now with special needs and these types of programs compared to what they were when I first started in this field back in the early 70s.

Mike Hoenig Well thank you Cheryll, that is the perfect segue because just going back and touching briefly on the history because I think Olmstead, are so important and really set the stage for people having community-based options. One other thing I did want to mention briefly was the establishment of centers for independent living. The first one was begun in 1972. It was formed by Ed Roberts, an individual polio survivor who actually was in an iron lung. He had been deemed to disabled to go to college and then he was deemed to disabled to go to work. He ended up starting an independent living center which was led – or I should say governed and staffed – by a majority of people with disabilities. To this day, that is a requirement of these organizations. They are community-based, they are not places where people go to live, but they provide a variety of services in the community, chief among them being advocacy and this whole idea of moving away from the medical model in which the person with disabilities was blamed for inaccessibility and the burden was on a person with a disability. Now, with the establishment of living centers there was really a move towards making the environment more accountable. Quick on the heels of that was the Rehab Act of ’73, which made it illegal for state agencies, federal agencies, public universities, and other public institutions receiving any sort of federal funding to discriminate against people with disabilities. So, we had that going on and Cheryll mentioned the, what at first was called the Education for All Handicapped Act and eventually was renamed Individuals with Disabilities Education Act, which required free and appropriate public education for all. So, we see in the ’70s all of these moves forward for leading to things like the Olmstead decision. I’d like to mention one more of these precursors, and it actually happened in 1983, and it was the establishment of the Home and Community Based Services, or HCBS program. This actually allows states to access a waiver of Medicaid rules that govern where people live. So even if somebody might be identified as needing institutional care, they can apply for a waiver meaning that they’re able to access those services in their home. There is quite an Iowa connection with that in that Julie Beckett was a leader in reaching out to her legislators and other Congress-people. Her daughter, Katie, had significant physical disability and because services were not available in the community and she could not access funding at least for services in the community, Katie lived in the hospital, I think until about age three, so that was unacceptable to the Becketts. The initial physical – the waiver – eventually the name was changed, but is often still referred to as the Katie Beckett Waiver, so that is the Iowa connection. Cheryll, do you have any other comments about HCBS in terms of your work in rural Iowa as a nurse and how that’s impacted the people that you serve and the families that you serve?

Cheryll Jones Well, the Home and Community-based Waiver Services are extremely important. I mean there’s more now. There’s a number of waivers. Those can apply to children or individuals with intellectual disability. There’s the health-related ones. There’s also a children’s mental health waiver. So, there are a number of things which provide resources for these families. But one of the big things that all of these waivers can help provide is respite for families and as we talk more about needs, respite is such an important thing. The Home and Community-based Service Waivers have been an extremely beneficial resource for families and for individuals with special needs. Now, are they available to everybody and are they as available as they should be? No. The waiting list in Iowa to get on a waiver, which you newly apply, is about 18 months to 2 years. So, there’s a huge demand for it, but for those individuals who can access it, it is an incredible resource.

Mike Hoenig It certainly is. I would be remiss if I also did not mention the Americans with Disabilities Act that was signed into law in 1990. Most of us refer to that as the civil rights landmark legislation for people with disabilities and covered the basic areas of employment, public services, public accommodations, and telecommunications. We’re getting ready to celebrate 30 years of the ADA and it has made a huge difference in our country today. Before we move on to another topic, I do think – Cheryll you mentioned that – things aren’t perfect. We still have to watch, you know – certainly in a political environment- that there have been some moves to weaken some of the programs and laws, whether it be Olmstead, the ADA. We’re just – at the time of this podcast – unfortunately reading about a situation at the Glenwood Resource Center out in Western Iowa where it appears that there are some claims that are being reviewed by the Department of Justice now on human experimentation. So, we cannot just let our guard down, those of us that are in the movement, and say well, it’s all better, because we’re still working and there are still issues that we do need to deal with. But, I’m certainly glad that we’re not warehousing people in jails in a way that was back in the 1860s.

Derrick Willis Thanks, Mike, and thank you too, Cheryll, for sharing some personal experiences, but also some of the history. We’ve come a long ways, as you both have said, and we do have a long ways to go. It’s so important that we know the history as we continue to fight and work for the civil rights of people with disabilities. Thank you again. Now, I’m going to shift a little bit and take a little time to talk about the importance of using respectful and appropriate language when talking with or about people with disabilities and special health care needs. Mike, could you kind of talk a little bit about this subject called People First Language?

Mike Hoenig Sure, Derrick, thanks. This is a very interesting topic, as a person who has lived with a disability since birth, I was exposed to it as a young adult, and that was the idea that the person is not their disability. So, you know, back in the day you’d hear terms like a Down kid, a Downs kid, or a wheelchair-bound person, or whatever. The term retarded unfortunately was often used – and people just didn’t even know – crazy, birth defects, all kinds of negative terminology. So, there has really been a move within the disability community to replace that language with using the person first. So, a person who is blind, a person who uses a wheelchair, a person who has a physical disability, a person with an intellectual disability. What’s very interesting to me now is that, as happens in any movement, there is a shift again and that there are a number of groups who really do want to put their identity first. We have a disabled student group on campus and many of them when they write about themselves or their activity put the word disabled first and that is intentional because they see that as such a strong part of their identity. They are proud of it. We often used to say people with autism and within the autism community, there’s been a push-back to that to the point where people often will say autistic adults or even autistics. Bottom line is to respect the preferences of the individual and if you’re not sure, just ask. And we’ll tell you because at this point it’s going to be different for different people. Cheryll, did you have anything else to add on that topic?

Cheryll Jones No, I think again, when you work with individuals with special needs or individuals with disabilities, anything, asking people what is your preference and they’ll let you know as you said, Mike. They’ll tell you how they want to do that. But, I do think that, for example, when I first started working for Child Health Specialty Clinics, we were called State Services for Crippled Children. That was the name of our organization. Now, that’s the terminology we would never use now. So I think that there’s been more sensitivity among providers about how we refer to individuals. In a less derogatory way, but again, as you said, the mood is shifting and some groups are wanting to be referred more in the context of the disability or special needs. So, asking folks what they want to be called. Then for children, parents will tell you, too, how they want their child referred to. So, it’s basically talking to them and seeing what they see.

Derrick Willis So, I want to shift a little bit, and knowing that Anne has a background in public health, I’d like to talk a little bit about some of the public health issues. Anne, you mentioned earlier that one health disparity among people with disabilities is that they are generally less physically active than their non-disabled peers. I was wondering if you could talk about some of the reasons for that along with some exciting initiatives going on to create inclusive recreation opportunities.

Anne Crotty Sure, Derrick. The CDC states that nearly half of people with disabilities nationwide get little to no physical activity in any given week. Some barriers to physical activity could be lack of transportation, cost of activities, gym and fitness centers that are not equipped or trained to serve people with disabilities, and caregivers that might be so overprotective that they do not allow someone with a disability to take the risks and make choices that people without disabilities are allowed to do every day. This limits health and quality of life, but things are changing, though. A few examples . . . the Iowa University Center for Excellence on Developmental Disabilities, known as the UCEDD, is also awarding many grants to community-based organizations that want to implement inclusive and sustainable recreation programs in their communities. We did this last year as well and a few of the examples of programs or projects that organizations pursued were things like first offering person training for people with disabilities and that includes training staff on how to adapt their approaches to serve people with both physical and intellectual disabilities, and then also providing the personal training services themselves. Another example was the city of Fort Dodge, in combination or partnership with Facing Autism, trained all of their city lifeguards in disability inclusion and etiquette. They also purchased adaptive equipment for things like t-ball and they did a whole bunch of little events like they purchased adaptive musical instruments to loan out to schools so that children with disabilities could participate in music class with their peers. Just imagine how rewarding it is just to see children able to participate with their peers finally. In another example, the Girls on the Run program is implementing an evidence-based and adapted curriculum that allows girls with disabilities to participate with their peers. It includes things like training for coaches, community health inclusion assessments in the community, and adaptations for girls. The community health inclusion index assessment can identify areas for improvement in the community. Small changes can really open doors for people with disabilities to participate and these changes will often make it easier for those without disabilities to participate as well.

Derrick Willis Well, it’s so so great to hear about some of the projects. Anne, you mentioned the quality of life and I’d like to ask Cheryll and Alejandra just to kind of talk about some of the challenges that families face when caring for loved ones with special health care needs and how that impacts the quality of life as well.

Alejandra Escoto So thank you, Derrick. To answer your question, I wanted to share a little bit of information from a project that Child Health Specialty Clinics is working on. For the past year, Child Health Specialty Clinics has been working in conjunction with the Iowa Department of Public Health to conduct a needs assessment that uses systematic methods to determine the greatest needs for the population of children with special health care needs throughout Iowa. This data and information collection process has been going on for about a year and has allowed us as an organization to better understand how the current systems of care are impacting children and youth with special health care needs and what can be done to improve these systems. To better understand the challenges that families are facing with caring for loved ones with special health care needs, we facilitated focus groups with Child Health Specialty Clinic patients, families with children and youth with special health care needs that are currently not utilizing our services, and underrepresented groups throughout Iowa. We also conducted interviews with family leaders throughout the state to better understand how systems are impacting families with special health care needs. What we found from the focus groups and family leader interviews is that Iowans are facing challenges in identifying a medical home that is capable of providing the care that fits the needs of their children with special health care needs. Participants said that they experienced barriers in receiving timely referrals to specialists due to the lack of available providers, financial constraints, and challenges with transportation. The focus groups and interviews also revealed that they experienced barriers with waiver services as they often lack the flexibility that many families need, such as the lack of flexibility in the structure of the home visiting programs, shifting power dynamics during advocacy situations, especially when it comes to navigating the patient-family relationship, and the limited number of resources available in a family’s native language. Families also expressed that they are in desperate need for more family support such as access to high-quality and reliable respite care and assistance navigating the complex healthcare system. So, while those are some of the main findings from our needs assessment, Cheryll, do you have anything that you want to add about what you’ve seen in your practice?

Cheryll Jones Thank you, Alejandra. And actually, as a provider, the clinician in the clinic, it’s always a little reassuring when focus groups and studies like this support what you’ve been seeing in your day-to-day interaction with families. What I’ve learned over the years in working with children and youth with special health care needs and what we’ve heard from their families, they face lots of challenges. One of them is finding a diagnosis. We see a lot of children in our clinic who come here because the family knows something’s not right, but nobody’s figured out what it is or some families will come and say “I’ve been saying for a long time something’s not right, but nobody listens.“. Finding that diagnosis can be daunting and frankly for some families can take years. Parents, they feel guilt or they ask themselves – and I have had them ask me this – “Is it something I did? Is it something I didn’t do that caused this?” Families are dealing sometimes with a lot of emotions about did they contribute to their child’s special needs. The other thing that we forget – and we talked a little bit about this – but what we so take for granted, getting in and out of bed, getting in and out of a chair, eating, bathing, brushing our teeth. For some of these children with significant disabilities, the caretakers are responsible for all of this. So they’re facing these types of needs and for all of us who have had children, you know as your child gets older, they take on more and more responsibility for what they do for their care. For some children with significant disabilities, they don’t move on to those more increased autonomy in this. The other thing we sometimes forget about with challenges for families is the needs of siblings without a special need or without a disability. These kids can take backseat sometimes to the needs of the child with the disability because necessarily some of these children have very serious health and developmental issues. So, their needs are front and center and sometimes the siblings kind of take a backseat to this. Also, some of these children help with child care or caretaking very young. But one of the things that has impressed me about the siblings and the children I see with special needs is how caring they are for their sibling with the special need. The other phenomenon I see, because I’ve been following some of these kids up through adult life, is how many of these siblings go into the helping professions. They go into medicine, they go into nursing, they go into social work, they go into therapy. They are helping. They often go in – and it’s an impressive thing I’ve seen. One of the other phenomenon I’ve seen with some of these families is the parents focus on the health and well-being of their child, but they don’t take real good care of themselves. So some of them have not had the kind of health care they should have either, so they tend not to focus on their own health. These families can experience social isolation. Now, I think it’s getting better over the years that we’ve done more and more effort to integrate children and families with special needs into the community, but can still be an issue. So, isolation can be a problem. Finding daycare for kids with special needs so that families can even go out for a dinner together can be problematic. The challenges of raising children with special needs can strengthen or tear down the relationships, including extended family and immediate family. So those are some struggles that sometimes occur. The other issue for these families is financial. Many of these families have significant financial needs. In one study about 30% of families of children with special health care needs found that the parent who was the primary caretaker for the child either had to reduce their work hours or stop work completely to care for the child. I see this phenomenon a lot in the families I serve. People who have to either cut down employment or they say “I just can’t do it.“. The other thing we see is families who are on the FIP program, the Medicaid program, where they have to work or they have to be looking for a job. If you’ve got a child with special needs that can present a lot of challenges. So we are ending up writing letters to the Promise Job program saying “this child has serious health problems, developmental problems, this mom or this dad needs to be available“, but that can be a real challenge too. Then, finally, are the challenges they see with insurance. Many children with special needs end up, if not as the primary payer, Medicaid is the secondary payer. The challenges of what insurance will or won’t pay for these families, prior authorization is required for so many things. So these are some of the struggles I see and frankly, Alejandra, they’re pretty consistent with what we’ve observed here in our clinics with what the families are telling you. But, the other big, big need that they say is “we need help navigating this system. It is complex, it’s confusing. We don’t know how to do it“. So, in our organization, we are blessed to have family navigators in each of our regional centers. These are parents of children with special health care needs who can help us help the families navigate this system. But those are some of the things we’ve seen over the years in terms of some of the challenges that families with children and youth with special needs face.

Derrick Willis Alejandra and Cheryll, thank you for helping us understand some of the quality of life issues and some of the things that our families do experience. I also am grateful for the needs assessment because that really kind of helps us as practitioners know where the true needs of families and individuals with lived experiences. I know through some of our work we’ve learned that transition is a major issue as well and I would wonder if you could speak a little bit about transition, particularly around pediatric to adult health care, as it seems to be a hot topic across the country and in the state of Iowa as well. So if you can talk about some of those factors that make this such a big challenge, Alejandra and Cheryll.

Cheryll Jones Okay, thank you Derrick, and I’ll ask Alejandra to speak to this, but transition is actually one of the priorities we have, one of our Title V priorities, in terms of transition of children from the pediatric to the adult care system, children and youth with special needs. Now, there’s a big difference between the pediatric system and the adult care system, if you will. What health care transition is it’s the process of changing from a pediatric to an adult model of health care. There are significant differences between those two models. In pediatric care, it’s family-oriented and relies on significant parental involvement. Now, that involvement can get less as the child gets older, especially if they are a normally developing. A typically developing child doesn’t have a lot of medical issues that the child assumes more and more responsibility. For children with special healthcare needs, that isn’t always the case. Adult care is more patient-specific and requires autonomous, independent skills of patients. For example, as an adult, we call our health care provider ourselves, make the appointments, say “I need to be seen, I need my flu shot, I need this“. In pediatrics, that type of care is taken care of typically be the parent. Health care transition is important for all youth, regardless of whether they have special health care needs or not, so that they can maximize lifetime functioning and well-being, and really know how to appropriately utilize the healthcare system. It’s widely accepted that well-timed transition from child to adult health care system is specific for each person. Everybody’s different. So, you have to modify that, but the process of transitioning care of adolescents with special health care needs is a priority that we’re seeing and it also presents some challenges. Core elements of health care transition for children and youth with special needs include several things. One is that we need to ensure that all young people with special health care needs have an identified health care professional who attends to the unique challenges of transition and the needs of those children. I think it was Anne who talked about the concept of a medical home. This is somewhere where a child, an individual goes, where that place, that provider can really help to coordinate and see these are your needs and help you plan for that transition. We need a system that knows what the core knowledge and skills required to provide developmentally appropriate health care transition services are and it’s not something that we, you know, we all have a know. Frankly we’re just now starting to get more training and education in that area. But, what are the things we need to think about when people are looking at needing to train, to transfer to adult care? There are some places that are looking at even certification requirements for primary care providers, for physicians, for nurse practitioners, for physician assistants to help us learn that. Certainly was nothing that was ever taught to me in my basic nursing education. Over the years I’ve gone to different programs to learn this, but I think there’s more of an effort now to integrate that into basic health care trainings. The other important thing that parents have said forever: maintain an up-to-date medical summary that is portable and accessible. Parents talk all the time about how many times they’ve had to give their life story or the child’s life story. So looking at the ability to have a portable and accessible medical summary that can be shared among the various providers. Now, with the implementation of electronic health records, we may have more opportunities to do that in a more electronic way, but we still aren’t quite there yet. The other thing is development of an up-to-date and detailed, written transition plan in collaboration with the young people and their families. What are the needs? What are the things you want to work on for transition? And then working with the child and the family on doing that. The other thing – and Anne mentioned this is an issue for individuals with disabilities – is that they often don’t get the required, regular preventive care. We see that with individuals with children with special health care needs. Sometimes the routine-type of health maintenance that they should get is missed because they’re seeing the cardiologist and the neurologist and the orthopedist and whatever, but nobody putting it all together. So we need to ensure that the same standards for primary and preventive health care are applied to adolescents with special health care needs, as are with other individuals and the same holds true for adults when they move into the adult system. Then, we need to ensure that affordable, comprehensive, and continuous health insurance is available to young people with chronic health conditions throughout adolescence and adulthood. Alejandra, I don’t know if there were any comments regarding this transition issue when you did some of the survey of families or if you have anything to add to this, but certainly those are some of the things we see as we look at transition.

Alejandra Escoto Yeah and to add some of the findings from the needs assessment, on transition to adult healthcare was by far one of the top 3 things that our key stakeholders identified as a need in Iowa. Especially when it comes to finding providers in their areas, most of the time in rural areas, that are able to properly care for their now youth or young adult with special health care needs. That’s something that people are really struggling to find. But, some of the core elements that you have as an organization, Child Health Specialty Clinics has tried to come up with some resources that can help clinicians and families in this transition, such as transition quick guides that can give an overview on what a youth with special health care needs may need to think about as they transition into the adult system of care.

Cheryll Jones In Child Health Specialty Clinics, we do stress the importance of transition and we have guidelines for different ages. What do you at different ages? It comes from that transition but we do use it at Child Health Specialty Clinics. We start the process at age 12 and people say “12? My goodness“, but we’re introducing the concept that we are going to be talking with you and your parents over the next several years about things we need to be thinking about as your child gets toward an adult at age 18. At age 12, we introduce the concept. At age 14 we start to really talk about what are some of the things that we need to do and that includes some questionnaires we have for the child or the adolescent, and the family to say what are some things you want to work on? I had a child in the other day. He’s 14 and he said “I want to learn more about my medicines and I want to know what I should do in an emergency“. So we’re gonna work on some of those things and in 6 months when he comes back we’re going to say how’s it going, how’s it working? At age 16 it’s recommended that we prepared the child and the parents for the adult approach to care and discuss preferences and timing for transfer to adult health care. A lot of families are getting nervous about how long will my pediatrician see me and so what we talk to them about around the age of 17 or 18 is talk to your pediatrician if that’s who you’re seeing because pediatricians typically will follow kids into their 20s and then they say we need to transition. If you’re following with a family practitioner, they’ll continue to follow you, but those are some things. By 18, we talk about transitioning to those adult providers, and between 18 and 22, really the total transfer of care to an adult medical home and specialists with that transfer information I talked about, the medical record, the transition plan, those types of things. Now, this timetable works well for individuals assuming that the adolescent will assume partial or total responsibility for their health care. Now, we have a number of children that we follow in our clinic, that this is not the case. They are going to require significant care from others for the rest of their lives. For those with severe disabilities or healthcare concerns, they present different challenges as they age into adulthood. I actually discussed this with our clinic family navigator, who is the parent of a young woman in her 20s now – we followed her in our clinic until she aged out of our services – to talk with her about what are some of the issues that you deal with as a parent of a child with significant disabilities, where the child taking over their care is not the option. Some of the things she talks about was identifying an appropriate adult provider who really is comfortable in dealing with an individual with this degree of disability. She said that’s been a real struggle. Now, we are in a rural area here and so the issue of finding qualified providers or people who are willing to do this in rural Iowa is tough. But that’s a concern. The other thing she said that you have to be concerned about with children with the severe disabilities is guardianship. At age 18, parents need to seek guardianship or some other legal mechanism for their child. For many families they say You’ve got to be kidding me, I’m the parent! What do you mean I have to get guardianship? Well, at 18, they’re still considered an adult, so we have to look at obtaining guardianship. This is not an inexpensive process. Some of our families are looking at hundreds, five-hundred to one thousand dollars for lawyer fees. If the child can’t speak, which was a case with our family navigators, they had to have a guardian ad litem who represented their daughter. So those are some of the issues that they need to look at. The other thing she said that they have to really look at is financial planning for the care living expenses, living arrangements of the individual, and what do you do if something happens to the parent. In case of either the parent becoming incapacitated or God forbid, would pass away. She said this is a constant worry of parents with children with this degree of disability. She said that they have a letter of intent about who should be taking care of their daughter if anything would happen to the either of them or both of them in an emergency situation. They also have a very well-written out care plan so that anybody that comes in knows how to take care of their daughter. The other thing she said is respite services. As difficult as this is in the child population, it gets probably even more challenging as an adult. So, those are some of the things that she identified as a parent of a child with significant disabilities where the option of the child taking responsibility for their care isn’t there. So she said what those families need is parent information, support, and education on what do we do in planning for the future of this child who will remain . . . somebody will have to be taking care of that child for the remainder of their life.

Derrick Willis Well thank you Cheryll and Alejandra, and everyone who has provided information. I think what we have done has provided a wealth of information related to disabilities [51:36-51:39], opportunities provided, looking at healthcare and how we respond to that, just great information. I appreciate all of you. Knowing that we have to wrap this up and knowing that this podcast is coming to an end, I’d like to ask each of you to share one practical tip which our listeners can start to implement today.

Mike Hoenig Thanks, Derrick. I gave a lot of thought to this topic and I think that one practical suggestion I would have is when you come into contact with a person with a disability, think about that individual as a person and not their disability. Remember that we, people with disabilities, have the same dreams, aspirations, challenges, wishes, and achievements that anyone else does.

Derrick Willis Thanks Mike. Cheryll?

Cheryll Jones Thank you, Derrick, and thank you for the opportunity to be a part of this discussion today. For me it’s work in partnership with children and youth with special health care needs and their families in the delivery of either your health care services or whatever services you’re doing. Now, working in partnership with families, it changes how you practice as a provider. I will guarantee you will find it one of the most rewarding experiences you will ever have, working in partnership with families.

Derrick Willis Thanks Cheryll. Anne?

Anne Crotty My practical tip would be to conduct a community health inclusion index assessment in your community, which is available through the National Center on Health, Physical Activity, and Disability. Don’t get overwhelmed with results. Implement what you can and know that anything helps. The goal is making bigger changes over the long-term.

Derrick Willis Thanks Anne. Alejandra?

Alejandra Escoto For my tip, I’d like to go back to the topic that Mike and Cheryll discuss, which was language. Language can be a very powerful tool. It can either be a tool of oppression or empowerment. So, I would take the time to understand that people with disabilities or special health care needs self-identify and then change your language based on those preferences.

Derrick Willis As we close, I would just like to say thank you. Thank you to all the work that you do and all of the information you have provided. This has been a great podcast and I look forward to hearing more in this health equity podcast series.

Hannah Shultz Thank you for joining us today. Special thanks to Rima Afifi, Anne Crotty, Alejandra Escoto, Paul Gilbert, Kaci Ginn, Mike Hoenig, Kathleen May, Felicia Pieper, Melissa Richlen, Hannah Shultz, and Laurie Walkner. Theme music for Share Public Health is composed by Dave Hoing and Roger Hileman. Funding for this webinar is provided by the Health Resources and Services Administration. Please see the podcast notes for an evaluation and transcript.

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