2021
Table of Contents Acknowledgments........................................................2 Introduction..................................................................3 Surveys..........................................................................4 Policy Roundtable: Panelists......................................7 Policy Roundtable: Prevailing Themes......................8 Message from Think Kids...........................................14
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Including All Kids | Project Report 2021
We’d like to thank the many volunteers and stakeholders who completed surveys, joined us for project webinars, participated on the data team, joined us for streaming events, and shared our project update emails with colleagues, friends, and family. This email list now exceeds 100 members, and we are very appreciative of everyone who has joined us for this journey. We've learned so much and are glad to have met and worked with you.
Acknowledgments
This report was produced by Think Kids, a West Virginia 501(c)(3) nonprofit organization, dedicated to improving the health and wellbeing of West Virginia’s kids. The primary author of this report is Kelli Caseman, Think Kids’ Executive Director. We appreciate the stakeholders who contributed their time to edit this document.
As always, we are grateful to the West Virginia Developmental Disabilities Council for their financial support and encouragement of this project. Most participants in the Including All Kids project are parents, caregivers, health care providers, and supporters of children with developmental disabilities. The ideas and experiences shared in this report are often those of project participants and do not necessarily reflect those of Think Kids or its funders.
Including All Kids | Project Report 2021
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Introduction
Health problems that adversely affect the wellbeing of children and youth with developmental disabilities set the stage for life as an adult that may be further, and perhaps unnecessarily, compromised. A higher number of children with developmental disabilities are socially and economically disadvantaged, and they often lack the community services or social support to access needed care here in West Virginia. There are significant challenges to ensuring health care access for children and families with special needs in our rural, medically underserved state. Families often struggle throughout the process of accessing care– from getting the right diagnosis, to finding specialty care, to accessing community resources for even the most basic of health services. The Including All Kids project is our first step in a journey of working with stakeholders– parents, caregivers, providers, and advocates—to better understand, give voice to, and prioritize the challenges families have within their respective communities around the state to accessing health care. Our goal is, with your help, to improve our health care system for kids with developmental disabilities. Our objectives are to: Raise Awareness Assess Challenges Initiate a Public Dialogue Compile and Share Recommendations for Improving the System for Affected Families
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Including All Kids | Project Report 2021
Surveys As part of this project, Including All Kids: Transforming Health Care Systems for Children with Special Health Care Needs in West Virginia, Think Kids and project stakeholders created a series of survey tools for parents, caregivers, and providers to learn more from those accessing services in these systems about challenges, perceptions, opportunities, and recommendations for positive change. The project data team created a total of seven survey tools— four surveys for parents and caregivers, and two surveys for health care providers. The group committed to disseminating one survey at a time, and closing surveys after each survey had received 100 responses. By the end of 2021, we had successfully completed two rounds of surveying. Complete results can be found on our website. Highlights are shared in this report.
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Survey One: WV Family Survey: The Health Care System I This 13-question survey was the first in the series and released in April 2021. The intent of the survey was to learn more from families and caregivers about the amount and quality of assistance they receive while navigating the health care system. We included questions about care coordination, availability of services, and barriers to care. A full report with questions and responses can be found on our website.
Including All Kids | Project Report 2021
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Survey Two: WV Family Survey: Perceptions This 12-question survey focused on how parents and caregivers feel they are perceived by those working in the health care system— if the negative perceptions of those with developmental disabilities could adversely affect the quality of care received. We believed by learning more about how families perceive the health care system, we could better engage in a meaningful dialogue with them. A full report with questions and responses to this survey can be found on our website.
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Survey: The Health Care System
There are significant challenges to ensuring health care access and quality of care for children and families with special needs here in our rural, medically underserved state. Here are highlights from survey #1, WV Family Survey: The Health Care System I. We were surprised by the variety of experiences people have had, often depending on where they lived around the state. We encourage you to view the survey details on our website to read the individual comments from respondents; 70% shared personal experiences and ideas for improvement.
1.9%
6.7%
21.2%
How would you rate the amount and quality of assistance you've received from the health care system to navigate it?
26%
15.4%
26
%
While 29% rated their experiences as "average," 26% said that they received little to no assistance as they've navigated the system.
Said they've received little to no assistance.
28.8%
5.8%
Have you ever been waitlisted to receive health care services?
50%
44.2%
41
%
Of respondents have never been waitlisted
While the majority of respondents had not been waitlisted for services, over 16% said that they had been waitlisted for multiple services-- most notably, mental health care.
13.5%
41.3%
16.3%
50
3.8%
18.3%
5
Have you ever received help from health care employees identified as "care coordinators" or "service coordinators"?
6.7%
%
Have been helped by care coordinators
Half of the respondents had received help from care coordinators. A little over 44% had not. Some respondents shared stories of coordinators who provided valued support; some had never received this type of help in-state.
Including All Kids | Project Report 2021
Survey: Perceptions As the project progressed, we frequently heard from families and caregivers who shared varying experiences with medical professionals and facilities, and these experiences shaped their perceptions of the health care system. We encourage you to view the survey details on our website. Nearly 90% of respondents shared information about their experiences, and early 80% shared recommendations for improvement. It was clear to us from these responses that families are looking for an outlet in which to share their input, frustrations, and ideas.
12.7%
24.5%
Do you believe that the health care system is responsive and supportive to the health care needs of children with developmental disabilities?
62
% Over 62% did not believe that the system is responsive/supportive.
Do not believe the system is responsive
62.7%
9.8%
2%
Around 13% of respondents shared in the "other" comment box that sometimes, in some offices/facilities, they felt as if staff were supportive of patients and families.
13.7%
Are you ever concerned that a physician or medical provider's negative perception about people with developmental disabilities contributes
15.7% to a lack in access to care, or the quality of that care?
15.7%
43
% Responses varied greatly to this question. 43% of respondents
Sometimes concerned about negative perceptions
43.1%
answered "sometimes." Around 14% answered "always," while 10% answered "never."
2%
30.4%
Have you ever stopped going to a doctor's office because the way the doctor or staff treated you and your child?
67.6%
67
%
Stopped seeing a provider because of how they were treated
Including All Kids | Project Report 2021
An alarming number of parents or caregivers reported that they stopped seeing a health care provider due to the way they were treated — 67%, with 31% responding "no," and 2% responding "other."
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Policy Roundtable: Panelists 7
Bill Albert- Director of Legal Aid's Advocacy Project, Legal Aid of West Virginia Christy Black- Parent and Advocacy Specialist, West Virginia Developmental Disabilities Council Allison Bungard, J.D.- Parent and Partner, Dinsmore & Shohl LLP Lesley Cottrell, Ph.D.- Director, WVU Center for Excellence in Disabilities Beth Emrick, MD FAAP- Associate Professor of Pediatrics, Developmental-Behavioral Pediatrician at Marshall University Jodi Lindsey, MD- Medical Director of WVU Medicine Children's Hospital Neurodevelopmental Center Pam Roush, Director- West Virginia Birth to Three Steve Wiseman- Executive Director, West Virginia Developmental Disabilities Council
Including All Kids | Project Report 2021
We asked panelists to describe what navigating the health care system was like for families of children with special health care needs. One panelist said it was like "putting a square peg in a round hole." The health care system is not intuitive for them. There are no direct paths or guides to help them navigate it. The health care system was not created for these families and rarely adapts to meet their needs. It's often inward-facing, meaning it's designed to meet the needs of the system itself and not the needs of patients navigating through it. It can leave parents feeling deeply disempowered, especially those without the financial means to pay for better access to the health care system. West Virginia does not have enough pediatric health care providers in the state to meet the needs of its children. This is especially true for children with special health care needs, like many with developmental disabilities. The shortage and uneven distribution of both primary and specialty care providers result in gaps in health care for residents where pockets of rural and underserved populations reside.
Including All Kids | Project Report 2021
Policy Roundtable: Themes
On October 21, Think Kids sponsored a policy roundtable with parents, health care providers, policymakers, and community stakeholders for a conversation about the challenges to accessing comprehensive health care for kids with developmental disabilities here in West Virginia and potential policy solutions to improving these systems. Here are some prevailing themes:
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Even with routine preventative care, and even in more densely populated areas with more providers—like Charleston, Morgantown, and Huntington — it can be challenging to find pediatricians, behavioral health providers, and dentists who can accommodate families of children with special health care needs. Their offices may not comply with the accessibility guidelines; they may not have a wheelchair ramp, for example. They may not have a wheelchair scale, making it impossible to gauge a patient's weight accurately, or a panoramic dental x-ray machine that can accommodate patients in wheelchairs. Few facilities, including hospitals, have an adult adjustable changing table, making it impossible to change an older child while waiting to see a health care provider. This lack of accessibility leads to a myriad of challenges that families face when accessing health care for their children. For example, it’s virtually impossible to arrange a quick response when it comes to emergency care. Primary care providers (PCPs) rarely have "backup" providers in their practice if the PCP is out of the office or already scheduled with other patients. Emergency transportation for a child in a wheelchair is almost nonexistent, even in towns like Charleston with public transportation. Medicaid-funded transportation via Modivare must be arranged weeks in advance. What could have been a scheduled trip to the doctor and perhaps a prescription becomes a trip to the emergency room and possible overnight hospital stay that is a costly expense for both families and insurance providers. This is a prime example of how parents/caregivers face challenges just when accessing general care. Many children with developmental disabilities have special health care needs that cannot be met within their hometowns, and sometimes, in their own state. In West Virginia, most families are forced to shuffle logistics constantly. One mother called the effort "a full-time job." This doesn't just include physician visits but also providers along the continuum of care for individuals with lifelong disabilities. For example, a PCP's office can be in one county, a physical therapist in another, and an occupational therapist in another. And then, there is specialty care, often hours away in other states. Parents and caregivers can receive pushback from their children's schools for pulling them out for appointments during school hours, but there is no alternative. Parents and caregivers often
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Including All Kids | Project Report 2021
take time off from work for lengthy trips to access care that cannot be found in West Virginia or closer to home. Parents expressed fatigue and frustration with health insurance providers, particularly Medicaid, that often challenge covering needed treatments and services. Many therapies that children with special health care need aren't coded with the typically used codes on the Current Procedural Terminology (CPT) charts, which insurance companies then flag. The process can take months, and therapies and services are sometimes denied. Often, when primary and specialty care providers are not affiliated with the same hospital or health care system, there's a disconnect between electronic health record systems, resulting in fractured medical histories. As a result, parents have to play the role of record keeper. Many parents travel long distances to other states for care —like to Children's Hospital of Philadelphia (CHOP), Cincinnati Children's Hospital, or Nationwide Children's Hospital in Columbus — and these hospitals often function as a "hub," meaning that many children needing to access specialty care that they cannot receive in-state can travel to these larger hospitals and be seen by several specialty providers working in the same facility. Some parents carry printed documentation in large, bulking binders full of records from multiple providers. One wonders what happens when parents without the tenacity or understanding of the health care system do not take it upon themselves to centralize and store this important information. The consequences can be potentially detrimental to their children. Parents and caregivers have to play the role of case manager, sharing pertinent information between providers who do not have access to each other's health records. Sometimes this lack of information can result in a duplication of lab work. One parent expressed apprehension in sharing this information between providers because she's not a medical professional and is afraid that she can misinterpret something that a provider had shared with her. And it isn't just medical providers who should share records; optimally, information would be shared with other service providers, such as physical therapists and
Including All Kids | Project Report 2021
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in-home services, perhaps through a portal where all data could be centralized and shared. Telemedicine has proven to be a greater asset than once realized, and some families have found it beneficial in alleviating some issues with transportation. But not all families have easy access to highspeed internet. Some families may not have enough minutes on their cell phones for telehealth or telephone visits. Utilizing technology is a great idea; it could go a long way in addressing the challenge of keeping health records intact. But meaningful solutions can't come at the expense of families who lack the financial ability to benefit from the technology. Over the last ten years, a few health care systems in our state have focused on capacity building. A leading example is the West Virginia University (WVU) Medicine Children's Neurodevelopmental Center, which has grown dramatically since its inception but is still not, as its director described, "to the point that's necessary for that critical mass." WVU Medicine now has nine pediatric neurologists, and then there are now others in the state. But there are still not enough. New visit evaluations can take anywhere from an hour and a half to a three-hour visit, so providers can only perform a limited number of them in one day. The WVU Neurodevelopmental Center operates as a multi-disciplinary clinic. It's run by a pediatric neurologist, two psychiatrists, primary care provider, and a rehab pediatrician. Their goal is to operate similarly to larger children's hospitals around the country with a "hub" approach, so families do not have to travel long distances or out of state for care. Also, Marshall Health recently hired its first board-certified developmentalbehavioral pediatrician. But the providers working towards this goal of more specialty care in-state will need help from the legislature. From a policy standpoint, a loan forgiveness program for pediatric subspecialties could be a meaningful incentive to recruit more providers to West Virginia. Some West Virginia hospitals are collaborating to share patient data. For example, WVU Children's and Hoops Children's Hospital embarked on a collaboration less than a year ago, and because they share the same electronic health records system, it is easier for them to share information between their hospitals. Similarly, Charleston Area Medical Center uses the same EHR system as Marshall Health, and they can share data. And sometimes, hospitals across the country can share
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Including All Kids | Project Report 2021
information with hospitals here in the state. But importantly, parents trying to maintain these records need to know which providers share information between their data systems. Communication between patients, providers, and systems is a continual and significant challenge. No panelist could name one centralized source or website in the state that lists every specialty provider. Health facilities will post their providers on their own websites, but there is no state entity that collects, centralizes, and shares this information. Parents on the panel stated that parents of children with a recent diagnosis often rely on information from other parents, rather than information provided from health care organizations or the state. If a new provider has been hired at a hospital within the state and is in driving distance for this family, how is the family supposed to learn that the provider is there? Providers on the panel shared some steps that their health care systems take to make primary care providers in their respective systems aware of services. The hope is that the providers will, in turn, refer patients to them. But sometimes, providers don't share this information with their patients. Once parents or caregivers find health care providers that they trust —whether they be in Philadelphia, Columbus, or Cincinnati— they are likely to continue going to that provider. And so, this lack of communication to parents of a newly diagnosed child cannot only be detrimental to the health of the child, but it can also thwart efforts to expand services here in our state. Medicaid is a federal and state program, with states having the flexibility to choose what non-medical equipment it will pay for under the program. West Virginia's Medicaid program has a list of noncovered equipment that includes equipment such as standers and gait trainers, as well as specialty beds and toileting systems, that are necessary to assist the children in their development and maintenance of their body's systems. It's a particularly significant issue for a family when they cannot afford such equipment. Providers and parents agreed that if Medicaid covered the costs for these things, it would alleviate considerable financial burdens from families insured by this program. Years ago, such equipment was covered. It's time to cover them again.
Almost all out-of-state health care providers do not have contracts with West Virginia Medicaid and, due to low reimbursement rates, never will. This is problematic for parents and caregivers who come home from doctors' visits with prescriptions and cannot get Medicaid to cover the co-pay because their providers are not registered with West Virginia Medicaid. Increasing Medicaid reimbursement for therapies and in-home nursing visits would benefit families and help sustain a higher level of professionals providing the service. In many areas of our state, therapists cannot support their business on Medicaid reimbursement rates. Even vendors who purchase and sell such supplies as adult diapers have difficulty maintaining these services due to the low reimbursement rates. Panelists wondered if negotiations could be made with Medicaid to purchase supplies via group purchasing orders. Kids and families need advocates and support. Especially in this time of COVID-19, where some states are debating whether they should ration care or rank the value of one's life over another, we need to stand together in a united voice that all lives have value. Even at that first moment of diagnosis, how a health care provider opens the door to this new world of having a child with a developmental disability can make a big difference in how families perceive and respond to their child's needs. Do West Virginia's families feel valued and supported by our health care system? Often, they do not. Together, we can do better.
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Including All Kids | Project Report 2021
Think Kids is committed to improving the health care system for children with developmental disabilities, because every child— no matter who, no matter where— deserves a healthy, happy childhood. If you agree, we encourage you to join us as we plan for the second year of the project. Visit our website to sign up for our project's email list, where you'll receive survey links, compiled results, event listings, and links to stakeholder webinars, where you'll have the chance to tell us how we can better engage families, health care providers, community leaders, and advocates in the project. The information that we learn from those who are willing to share their personal experiences is crucial to addressing systemic changes. For example, this year we learned that there is no centralized source for information about specialty care providers in our state. Parents are often criticized for searching on social media for information, but where else do we expect them to get it?
A Message from Think Kids
Kelli Caseman Executive Director
This is not a fast, easy road ahead of us, but together, we can address the systemic barriers that have troubled generations of families, here in our rural state. We look forward to an even more productive year in 2022.
Including All Kids | Project Report 2021
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Think Kids is a 501(c)(3) nonprofit, launched in 2020, with the goal of using data-driven advocacy to make meaningful change in West Virginia. We work to ensure that all of our state's kids grow up healthy. We work to equip parents/guardians, professionals, community advocates, and care providers with resources and services that ensure that kids are raised in healthy spaces. And, we inform and promote changes to local policies, systems, and environments to foster healthy living and prevent health inequities. We do this because kids are the most important investment we can make to change the trajectory of poor health outcomes in West Virginia. We envision a day when all of West Virginia’s children are safe, healthy, and aspire to do great things. Subscribe to our newsletter. Follow us on Facebook and Twitter. Bookmark our blog. Stay connected and advocate for West Virginia's kids.
This project was funded by the West Virginia Developmental Disabilities Council. We thank them for their support.
304-410-0499 kelli@thinkkidswv.org
A better West Virginia begins with its kids.
Department or Agency | SDG Progress Report 2020
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