Policy Roundtable: Prevailing 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:

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.

P o l i c y R o u n d t a b l e : T h e m e s

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

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

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

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.