Including All Kids West Virginia: 2022 Final Report

Acknowledgements

This report was produced by Think Kids, a West Virginia 501(c)(3) nonprofit organization dedicated to improving the health and well-being of all children in West Virginia. The primary author of this report is Kelli Caseman, Executive Director. We appreciate the stakeholders — parents, caregivers, professionals, and providers — who contributed their time to help produce this document. We want to thank those 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 project’s email list now exceeds 180 members, and we appreciate everyone who has joined us on this journey. We’ve learned so much and are glad to have met and worked with you. 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.

As always, we are grateful to the West Virginia Developmental Disabilities Council for their financial support and encouragement of this project.

Resources Referenced in This Report

ARC of WV provides programs and services to children and adults with intellectual and developmental disabilities and their families.

Disability Rights of West Virginia is the federally mandated protection and advocacy system for people with disabilities in West Virginia.  It is a private, nonprofit agency. Their services are confidential and free of charge.

The mission of the Down Syndrome Network of West Virginia (DSNWV) is to enhance the lives of individuals with Down syndrome by providing information, resources, and support to families and professionals and by promoting awareness and acceptance of individuals with Down syndrome.

The Exceptional Families of WV is a FB group of caretakers who care for an individual with multiple medical and/or developmental delays. Since they have limited resources for support, they are here for each other to provide an extended support network of caretakers with common needs for their children/relatives/ dependents in WV. Their goal is for caretakers not to feel so alone in this big world of special needs.

The FAST Program (Family Advocacy, Support, and Training) is a statewide parent and youth network that engages families in the planning, management, and evaluation of their child’s mental health treatment and service needs, including special educational requirements. FAST has five regional advocates, an attorney, and a statewide resource specialist and serves all 55 West Virginia counties.

Healthy Grandfamilies is a free initiative led by West Virginia State University to provide information and resources to grandparents raising one or more grandchildren. Designed as a series of nine discussion sessions and follow-up services, Healthy Grandfamilies is taught by volunteer professionals and paraprofessionals knowledgeable about each topic.

The Jeremiah Tree Foundation is a West Virginia-based 501(c)(3) nonprofit created to build a community-centered space for everyone to feel accepted, included, and supported regardless of diagnosis or prognosis.

WV Birth to Three is a statewide system of services and supports for children under the age of three who have a delay in their development or may be at risk of having a delay and their family. The Department of Health and Human Resources, through the Bureau for Public Health and the Office of Maternal, Child and Family Health, WV Birth to Three, as the lead agency for Part C of the Individuals with Disabilities Education Act (IDEA), assures that family-centered, community-based services are available to all eligible children and families at no cost.

The West Virginia Autism Training Center at Marshall University provides services to families of West Virginians with autism spectrum disorder and their educators and others significant in their lives.

The WV Developmental Disabilities Council’s mission is to assure that West Virginia citizens with developmental disabilities receive the services, supports, and other forms of assistance they need to exercise self-determination and achieve independence, productivity, integration, and inclusion in the community.

The WV Center for Excellence in Disabilities leads efforts to provide better services to West Virginians with disabilities through training, research, and services.

The mission of the WV Statewide Independent Living Council is one of consumer control, peer support, self-help, self-determination, equal access, and individual and systems advocacy in order to maximize the leadership, empowerment, independence, and productivity of individuals with disabilities, and the integration and full inclusion of individuals with disabilities into the mainstream of society.

Recaps on Our YouTube Channel

Watch Session Watch Session Watch Session

In June, we hosted Including All Kids: Discussion with Healthcare Providers. Many of the challenges families face when accessing healthcare for their children with developmental disabilities is a lack of access to quality care. Sometimes, specialty care is only found states away, or local health care providers don’t accept your insurance or are not compliant ||with the Americans with Disabilities Act. Watch the discussion recap on steps providers take to improve accessibility and quality of care for kids. We also discussed ways our state can reform policy to improve care.

Panelists

Beth B. Emrick, MD - Pediatrician at Marshall Health, specializing in diagnosing and treating ADHD, autism spectrum disorder, learning disorders, and developmental delay

Jodi A. Lindsey, MD - Director of WVU Medicine Children’s Hospital Neurodevelopmental Center, Division Chief/Pediatric Neurology

Jenna Wallace, PsyD - Psychologist, Division of Pediatric Neurology

Elliana Bohan is a WVU student working with Think Kids on the “Including All Kids” project. Learn more about the project from Elliana by watching her video and visiting the project webpage.

In July, we hosted Survey says: A data team discussion on what we’ve learned from parents/ caregivers with the “Including All Kids” project data team for a discussion on what we’ve learned over the past year from surveying parents and caregivers around West Virginia about their experiences with the health care system when accessing it for their children with developmental disabilities.

Panelists

Elliana Bohan - WVU Student Support with Think Kids

Sara Berzingi - WVU Medical Student with SAID-Oh (Students Advocates Impacting Decisions on Healthcare)

Amanda White - The Health Plan

Shawna White - Disability Rights of West Virginia Including All Kids: Project Report | 2022

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. In 2021, the project’s data team created 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.

Please identify the WV county where you live.

Answered 73 Skipped 0

In 2022, we faced significant challenges in garnering responses. While a small group of health care providers actively participated in the project, only one completed acurrently provider survey. Of the two that

we disseminated for parents/caregivers, only one

How far do you currently travel to access primary health care for your child?

Answered 73 Skipped 0

ANSWER CHOICES

RESPONSES

Around 200 miles or over 13.70% 10

Around 150 to 200 miles 13.70% 10

Around 100 to 150 miles 4.11% 3

Less than 100 miles 24.66% 18

Our child’s primary health care provider is in or close to our community. 41.10% 30

Our child’s doesn’t have a primary care provider. 0.00% 0

Other (please specify) Responses 2.74% 2

TOTAL 73

How far do you currently travel to access oral care for your child?

Answered 73 Skipped 0

What is your race or ethnicity?

Answered 73 Skipped 0

RESPONSES

ANSWER CHOICES

Around 200 miles or over 9.59% 7

Around 150 to 200 miles 12.33% 9

Around 100 to 150 miles 5.48% 4

Less than 100 miles 27.40% 20

Our child’s oral health care provider is in or close to our community. 35.62% 26

Our child doesn’t have an oral health care provider. 9.59% 7

Other (please specify) Responses 0.00% 0

TOTAL 73

Answered 73 Skipped 0

Answered 73 Skipped 0

ANSWER CHOICES

RESPONSES

ANSWER CHOICES

I’ve traveled out of state many times to access care. 27.40% 20

I travel out of state a few times a year to access care for my child. 17.81% 13

I’ve traveled through many WV counties on my way to access care. 9.59% 7

I’ve traveled across the state (many counties) once or twice a year to access care. 13.70% 10

I have only traveled long distances – such as trips out of state or across counties – a few times. 16.44% 12

I do not have to travel far to access health care. 15.07% 11

Other (please specify) Responses 0.00% 0

TOTAL 73

Answered 65 Skipped 8

ANSWER CHOICES

RESPONSES

I have previously lived in another state or states where health care services were more readily available in my community. 46.15% 30

I have previously lived in another state or states where fewer health care services were available in my community. 29.23% 19

Other (please specify)

Responses 24.62% 16

TOTAL 65

RESPONSES

Around 200 miles or over 10.96% 8

Around 150 to 200 miles 23.29% 17

Around 100 to 150 miles 9.59% 7

Less than 100 miles 21.92% 16

Our child’s mental health care provider is in or close to our community. 19.18% 14

Our child doesn’t have a mental health care provider. 15.07% 11 Other (please specify) Responses 0.00% 0

TOTAL 73

If you’ve ever used public transportation – including taxis, Uber services, etc. – to take your child to a medical appointment, have you ever experienced any of these challenges?

Answered 65 Skipped 5

ANSWER CHOICES

RESPONSES

Service lack accessibility to serve my child. 23.53% 16

Once my child was too old to carry, I could no longer access public transportation 26.47% 18 Service required me to book for far in advance before the service was needed. 25.00% 17

We don’t have public transportation in my community. 25.00% 17 Other (please specify)

Responses 22.06% 15

TOTAL 68

How far do you currently travel to access mental health care for your child?

If you have lived outside of WV, how does this state compare to other areas you have lived?

How far have you had to travel to access health care for your child?

Conversation with the Down Syndrome Network of WV

We wondered: What will it take to engage parents and caregivers across the state to build the necessary social capital to create positive change for kids?

So we asked them. Here’s the recap of three community conversations where our facilitator asked the same five questions. All attendees were either parents/caregivers of children with developmental disabilities or providers who care for them.

Five Questions:

1. Do you have challenges accessing health care for your child or children with developmental disabilities?

2. Do you think there’s an interest in building social capital/community building to give voice to and address these challenges? 3. How would you recommend building bridges between disability communities to work towards this common cause? 4. Who should be at the planning table? 5. What insight or advice do you have to share as we move forward?

For people with Down syndrome, some common health issues and severe medical conditions are more likely to occur, resulting in individuals needing routine primary and sometimes specialty care. Finding quality health care in rural West Virginia, regardless of where you live but especially in more isolated areas, can lead to a myriad of challenges for families. Simply finding a cardiologist, endocrinologist, dermatologist, etc., as needed in rural West Virginia is difficult. Finding a physician that takes Medicaid, for example, is even harder.

Because there isn’t a trusted source of centralized information for parents to access, many parents/ caregivers rely on “word of mouth” information from other parents. “It’s just easier to ask another parent,” attendees said. While some parents/caregivers know what comorbidities are via a provider, googling, or from other parents, some parents do not know what health issues or medical conditions to anticipate or discuss with health care providers.

This is why it’s critical for general practitioners to be compassionate and willing to research or educate themselves on the syndrome. For example, tonsillectomies and adenoidectomies were once recommended for children with Down syndrome. However, recent research suggests that children may risk developing respiratory, infectious, and allergic conditions later in life. If parents don’t stay up-to-date on this research, can they rely on medical providers to do so? Parent advocates don’t expect providers to have all the answers but to educate themselves on their kids’ conditions. For new parents or those who haven’t been trained to advocate for their child, it can sometimes be intimidating to challenge a provider on a treatment method.

Giving parents medical information — like continuing education units — could have benefits and help build trust between the provider community and the families they serve.

And so, it’s natural to coalesce around the needs of this demographic of families. Parents rarely reach out to others — policymakers, providers, other parents — until there’s an issue.

And there aren’t enough people in West Virginia with Down syndrome to build a “critical mass” or social capital to drive significant change. The families that want to advocate are pressed for time. Those in attendance referenced the number of people who couldn’t attend this meeting due to sickness in their families. Childcare is a challenge, as well as time. Many moms are out doing “pro-bono” work to support families without financial compensation.

Together, these are significant factors that impede progress.

But still, despite not having a critical mass, pressing challenges need to be addressed. Kids with Down syndrome need access to comprehensive mental health care, just like their peers, and the services aren’t available. We know that there are around 20 individuals in William R. Sharpe, Jr. Hospital with intellectual disabilities because no other services are available. This worst-case scenario concerns parents: What will happen to my child when we die or can no longer care for them? Parents are desperate to keep their children out of group homes, but services in our state are limited. There are the IDDW program, the Aged and Disabled Waiver (ADW) program, some personal and respite care services, family support services, the Children with Disabilities Community Service program, and that’s it.

A medical procedure like open heart surgery that is common for children with Down syndrome can potentially bankrupt a family. And so, the idea of

financially saving enough to prepare for health challenges once parents no longer work isn’t a realistic solution for many families. It’s a continual source of stress on caregivers; parents want their kids to be safe when they’re gone.

Several other states have more services with less strict criteria to qualify. Specific populations fall through West Virginia’s safety net because they’re perceived as “able.” For example, a higher-functioning child with autism with an IQ of around 95 who exhibits difficulty crossing the street alone doesn’t qualify for available services.

Attendees suggested more work around “topicspecific” issues rather than “disability-specific” ones to build more social support. Many children with developmental disabilities have shared health conditions. Work could also coalesce around age demographics, like challenges facing adolescents.

But the group strongly believed that groundwork needed to be laid to find common needs between advocacy organizations like the DSN-WV. They articulated a desire to find “neutral” ground where organizations can collaborate in an inclusive, equitable way. They suggested a panel or collective group working with a “point organization,” which could be outside the disability community.

The group discussed continuing rifts between academia and organizations working in this space and the animosity that beleaguers the movement. When a pressing issue — like eliminating the waitlist for the IDD Waiver — presents itself, people are willing to work toward a common goal. But it can be challenging when working to build a network of support.

Galvanizing issues, creating a neutral, equitable space, and finding an organization to take up this work were the key takeaways from this meaningful dialogue. We thank DSN-WV for its time and for sharing its expertise with us.

Community Conversation with the Jeremiah Tree Foundation

Participants began the conversation by sharing their experiences in knowing how it feels to be a parent of a child with either a new diagnosis or a first experience navigating a system — like health care or public education. They initially feared not knowing anyone, anything, or whom to contact. They shared stories of self-learning and times of trial and error.

For many disability diagnoses in our state, there are no support groups. Considering the wide variety of ways that a condition or syndrome can affect a child and family, people don’t readily share these experiences unless they know their audience can empathize, having shared similar experiences.

We heard from a mom who refused to have her son discharged from the hospital to ensure he received services. As a response, a member of the hospital staff told her that her son’s behavior was due, in part, to the family “not going to church enough.” The family experienced similar challenges with the school system. While their child didn’t have an intellectual disability, he did have a developmental disability. He qualified for advanced placement courses, but the school system accused him of “disrupting” AP classes and wanted him in “normal” classes instead. Struggling with major depression, mood dysregulation disorder, and chronic urticaria already made school difficult for him; the lack of support from the system impeded his progress. Still, he graduated because his family was willing to advocate for him. There are many families that, for several reasons, don’t.

A lack of resources always has beleaguered families of special needs children in our state. It can worsen a bad situation — whether it be accessing health care, public education, or social support.

But when it comes to advocating, perspective means everything. People are ready to advocate collectively if everyone shares a similar situation — like the lack of spots on the IDD Waiver list. But when it’s advocating for the group rather than just your child, it can be different. We should all want what’s best for each other’s kids and “stand shoulder to shoulder” with one another, but other parents come at these situations not wanting to “rock the boat.”

When advocating for something as complex as medical equipment not covered by Medicaid, it’s an issue that takes strategy, time, resources, and advocates from both the parent and medical professional perspectives. While we collectively know of a handful of parents and professionals interested in taking on this issue, there are not enough people who care to create the critical mass to take on the WV Bureau for Medical Services.

The group discussed how in previous years, lawyers and groups such as Mountain State Justice would fight for the rights of children and families in court. But many of these advocates have retired and moved away.

Similarly, parents had “champions” in the school system and at WVDHHR. While it should never be a “whom you know” network of supporters, there were at least people that families could rely on for help. Many parents are “clueless” about federal and state laws and how to hold school staff accountable. Someone who could help families navigate this system would be beneficial. Kanawha County is currently working on building a parent-led support group. Perhaps there’s much we can learn from them once it’s in operation.

The group agreed that having a diverse group of advocates— self-advocates, parent advocates, organizational advocates — and foundational support from invested professionals would be the optimal network of stakeholders who could collectively move the needle. Everyone would need to leverage their respective networks.

An excellent place to start would be when children are young, and professionals work directly with families — like with the Birth to Three Program. It’s where many relationships begin between providers and families.

Another place is the school system. Schools are required to have academic specialists on staff; what if they had designated liaisons for the special education population? An advocate would need to be someone who doesn’t work for the school system or is protected from consequences if parents report a lack of compliance with the law, intimidation, etc., on the part of the school system.

The Jeremiah Tree Foundation is the only organization in West Virginia that advocates for children with disabilities or chronic illnesses. It does not focus on a singular diagnosis. It welcomes parents, providers, and stakeholders under its umbrella.

It sees significant value in centralizing information on resources available to families and is willing to serve as the conduit to make this plan a reality.

The organization recognizes that some of the programs/services listed are already outdated by the time a resource guide is published. And yet, organizations still publish them. And so, a priority of theirs is to create a centralized resource for information. In doing so, they are in a key position to build bridges between agencies and families.

Their goal is to have a full-time director. This is an essential step for the organization; many disability advocates assume that their work should be 100% volunteer and not a paid position. This makes their work very limited, as they can only do it aside from their “day job.”

The group identified the Healthy Grandfamilies program as an important partner in this work and organizations advocating for more mental health care. The Exceptional Families Facebook page has been archived with a wealth of information, albeit sometimes dated, as well as the WV Waiver Families Facebook page.

Perhaps an additional next step could be a group meeting with representatives from the “big hospitals,” i.e., the state’s children’s hospitals and some of the out-of-state hospitals where families take their children — like Nationwide Children’s Hospital, Cincinnati Children’s Hospital Medical Center, and the Children’s Hospital of Pittsburgh.

Above all, we use our collective power to amplify our voices and improve health care and public education policy for the sake of children’s health. To do this, we must find a single organization to take the lead.

We thank the Jeremiah Tree Foundation for its time and for sharing its expertise with us.

Online Conversation with Parents

Two prevailing themes emerged. Panelists shared that they learned to advocate out of necessity and a feeling of responsibility because they know what it’s like to be a parent with a new and scary diagnosis and not knowing where to turn to get accurate information, a quality health care provider, and resources in their communities for support.

We held a webinar in early December 2022 with a group of mothers of children with developmental disabilities and invited only parents/caregivers to join us.

What drives people to advocate, and how can we build social capital within this community of advocates to improve the lives of children with developmental disabilities? Our conversation began with panelists sharing stories about what brought them to the place of advocating for not just their children but for all children with disabilities and what they think we can do as advocates to build a better network of support for kids and their families.

And they shared what it’s like when the same systems in place to help you are the ones that can be the most challenging to navigate. As one panelist put it: “It never made sense to me that the people that were in place to help you with your child are often the people that you fight the most.”

“We have to navigate care for the child that is not going to the doctor. We both work full time. While we have flexible jobs, neither of us have family or support systems in our community to watch our children when we have to take one to the doctor.” -parent response from the surveying project

And so, often, parents are the most knowledgeable about their child’s disease or condition due to selfeducation. They seek information and often learn “the hard way.” They may find themselves challenging authority figures, like doctors and teachers, which can be intimidating. It can be a lonely and isolating experience if parents have no support.

And, as panelists pointed out, if you’re new to the disability space and you go online to search for information, the data and information can be dated — even information posted on our own state government’s website. So, who do you trust? For many of our state’s advocates, it’s the parents. They are often honest and open about things that no one else will share — like how a provider’s staff may treat your family in their office or clinic, or struggles to communicate with a school’s Individualized Education Program (IEP) team. They can readily empathize.

One panelist said that due to the severity of her child’s prognosis and diagnosis, the only information she was sent home with after that initial doctor’s visit was about palliative care. The medical provider did not prepare her for any other outcome. Her daughter went on to live until age 11.

Another panelist shared that she was slow to learn about programs like Birth to Three because no one referred her to them or shared information about them, while another shared that she once took the growth chart used for Down syndrome children to her local WIC office because the staff there didn’t know that the growth rate for children with this syndrome was different.

That’s why finding support within the state from families who have had similar experiences — walked down the same paths — is so important. Programs and resources can be “best-kept secrets” because they’re not advertised or can’t be found via Google Search. But parents of older children know they’re there, as well as their capacity, cost, etc.

Clearly, younger parents value the insight of their peers, but like many other resources in our state, there are too few of them, and they deserve to be paid for sharing their time and expertise. Many volunteer to do this work.

“I have lots of recommendations, however, the biggest obstacle is, of course, money and personnel, money to purchase enough accessible vehicles and hire enough people, and also competitive wages to retain people that are hired and trained. In the world of developmental disabilities both are sorely lacking…” -parent response from the surveying project

Online Conversation with Parents

(con’t.)

Panelists agreed that there is an interest in the idea of capacity building, but in practice, there are significant challenges. Many parents are overworked and tired. Often, professionals, like social workers, are overworked, too. Panelists offered a few ideas for next steps to building a better network of support for families:

1. Show up. Yes, parents are overworked and often exhausted, but if you really want to build a bigger network, you have to follow through and show up if community or school meetings are supporting this demographic of kids in your area. Not every opportunity to improve the health care or public education systems involves litigation, legislation, or rallying. Sometimes, it just takes parents being present for meetings to articulate concerns.

2. Use social media. When used wisely, social media can be a great tool to help families coalesce around a shared issue or bring attention to or “call out” bad policy. While it can be tempting to air grievances, which may get you labeled as a “problem parent,” it’s also a great way to build local support. While many parents can’t afford a lawyer, most can use social media. Start a Facebook group. Message parents you see online sharing similar experiences, and make sure you connect with already existing groups. Don’t reinvent the wheel.

3. Find common ground. The term “developmental disability” is a blanket term encompassing several syndromes and conditions. While parents often look for detailed information on a specific health condition, it’s important to look at the bigger picture. Remember back in 2015 when hundreds of families and advocates rallied against changes to the Intellectual/ Developmental Disabilities Waiver, and in 2019 when they pushed to restore funding to the same program? These are great examples of a common cause creating social capital to bring about change. And it worked!

Under this big umbrella, we should celebrate diversity. The disability community is an incredibly diverse group. We should celebrate the differences in our diagnoses, geographic regions, age, ethnicity, etc. It’s a strength, not a weakness.

4. Parents must show up for each other, not just for their own issues.  As one panelist said, “Until what’s happening to my child is as important to you as what’s happening to your child, we’re not going to be able to create a full network of support.” There’s power in numbers.

5. Pool resources. We need more funding streams to pay for what needs to be done to build a robust network of support for families. We know this. But if we learn to utilize each other’s strengths, we’ll go further in reaching this goal. And perhaps in the process, we’ll show funders how vital these issues are to our community.

6. Fund the people doing the work. For far too long, we’ve expected parent advocates to volunteer their time for advocacy work. Everyone has to put bread on their tables. If a group, organization, or institute of higher learning receives funding to support the disability community, and the project includes parent advocates, they should be funded for their work. It’s rare to see such expectations from volunteers outside of the disability community; this shouldn’t be so prevalent.

7. Invite allies to the table. Legislators, providers, government liaisons, and adults with developmental disabilities all have a place in this space. We should be prepared to have difficult conversations, knowing some groups may come to the table with territorial issues or recurring conflicts with other groups, and work through the discomfort, knowing that it won’t be easy work but worth it for generations of kids to come.

Recommendations

• A public/private partnership should be formed to create an online portal for “one-stop shopping” of educational materials and resources for parents of children with developmental disabilities in West Virginia. The Jeremiah Tree Foundation is already working on this, but the project is more extensive than its current capacity and could use support.

• Create a core group of advocates to serve as a liaison with other state support networks to learn best practices to implement here as we expand our reach.

• Start a podcast. Parents can listen at their leisure — maybe when traveling or picking up kids from school. It could highlight resources, interview local advocates, and discuss relevant legislation during the legislative session.

• Provide parents with medical information learning opportunities, like continuing education units for providers. It could be beneficial in building bridges between our in-state health care system and families. Some parents are eager to learn more about their child’s condition and how to best access care. We have families that have attended medical conferences to acquire this information; let’s make it easier for them to learn virtually.

Think Kids is a 501(c)(3) nonprofit that 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/caregivers, 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.

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