In the News: NAVIGATING THE SYSTEM

Watch this news story of Sarah Clark and her daughter, Kennedy, from Missouri’s News-Press Now in February 2024 on the TV station’s Youtube channel. You can also read the interview on their website or as covered below.

Despite strides with child disability services, critical needs emerge in Missouri

Sitting in the living room of her St. Joseph home, Sarah Clark recalled an unexpected but prophetic piece of advice she received not long after the birth of her daughter. 

“The doctor at Children’s Mercy said the biggest advice I can give you is to start lifting weights,” she said. “I didn’t understand at the time.”

It was only a small bit of guidance at the time, but it’s gone a long way now for Clark as she helps her 8-year-old daughter Kennedy every day with physical tasks like moving up and down the stairs or getting into the car. 

Kennedy was born with an extremely rare condition called STXBP1, a neurodevelopmental disorder that requires near-constant supervision and assistance from her mother. She also is diagnosed with autism. Kennedy started having seizures immediately after being born and was rushed to Children’s Mercy for further evaluation. She was having 200 seizures a day before doctors were able to get them under control after two weeks. An epilepsy test revealed the STXBP1 diagnosis six weeks later.

“I knew there was a battle ahead of me,” Clark said.

The odds of a child being born with STXBP1 are 1 in 30,000, compared with other developmental disabilities like autism where 1 out of 36 children have the disorder. First discovered in 2008, STXBP1 causes mild to profound intellectual disability along with a wide range of other symptoms and disorders like epilepsy, spasms, developmental delays and hypotonia (low muscle tone).

“Physically, she is about 18 months because she can walk and do some running. Cognitively, she’s between 6 to 10 months old,” Clark said about Kennedy, who also is non-verbal. “We’re navigating this together. I did not know what to expect, how I would take care of her or what I would do. But we learn together every day.”

Studies are constantly providing new information into the condition that still has limited research and many unknowns in the medical field. On top of trying to learn about the disorder, it’s made parenting and finding consistent help for Kennedy all the more challenging.

“She was in day care until she was about 3. And then I had to pull her out because there are no day cares equipped to handle a child with her needs. She needs one-on-one care,” Clark said. “I had multiple different people that came and tried to be her personal assistant and most of them did not last but a day.”

With limited options, Clark was forced to leave both of her jobs to become a near full-time caretaker. Without the support from her husband Roger, taking care of Kennedy and balancing everyday life would be an even more daunting task.

The number of kids being diagnosed with a developmental disability is rising at a notable rate across the U.S. Nearly one out of 10 kids and adolescents — 8.96% — aged 3 to 17 was diagnosed with some form of a developmental disability in 2021, an increase from 7% just two years earlier according to the Centers for Disease Control’s 2023 National Health Interview Survey.

Despite notable strides over the last two decades strengthening programs, services and awareness for infants and children with developmental disabilities, Clark and her daughter are examples of the struggles many families still face navigating the system and connecting with specific health care experts, child care and other services to accommodate families and children with severe developmental disabilities.

Gaps in services and changes in certain areas can take a toll on families and impact the strength and effectiveness of the state’s network of assistance.

First Steps network takes a hit

Kennedy was referred and began her journey with early childhood development through intervention services with Missouri’s First Steps program for infants from birth to age 3.

The program, which receives funding from the state and the U.S. Infants and Toddlers with Disabilities Act, helps coordinate health specialists and services for young children with special needs and their families.

Studies show children who receive early intervention have better outcomes in communication, socialization and behavior.

“Early identification of a developmental delay is extremely important so that services can be offered that will help a child reach their potential at home, in school and in life,” said Kim Cordonnier, director of children’s programs for United Cerebral Palsy of Northwest Missouri. “I think early intervention has been talked about a lot and I think families are becoming more aware of how important it is.”

According to the National Library of Medicine, most children with STXBP1-related disorders can independently walk by the age of 5. Clark credits her First Steps coordinator with helping her daughter make significant strides in her development like sitting up by 7 months and walking by 2 1/2 years old. As vital as those steps were for Kennedy, she’d like to see First Steps-like plans extend beyond three years more often, especially for children with severe disorders.

“I do feel like it did help her a lot. And then, you know, after 3 you’re just kind of out ... and you have to figure it out until school, school offers therapies and it’s just ... I felt that she needed, you know, an hour or two hours of these every week and she just doesn’t get it.”

Challenges within the program itself are stretching resources and providers thin in certain areas across the region and state. The latest report from the Infant and Toddler Coordinators Association revealed that Missouri and 45 other states reported shortages of qualified providers for early intervention services in 2022, the second straight year every state reported a shortage. Speech language pathologists, physical therapists and occupational therapists were the highest reported areas of need.

Jennifer Welsh spent five years working as a behavior consultant and in-home therapist with First Steps and has more than a decade of experience as a behavior specialist in the Kansas City area. She covered a large area from southern Kansas City up to the Missouri-Iowa border as a First Steps provider.

“I’m a parent of children with special needs and knew how difficult it is to navigate that system and get the services you want,” Welsh said. “That’s really what brought me into the field because I didn’t know what to ask.”

Welsh worked closely with parents while also providing additional speech and communication training to children who struggled to develop learning readiness skills, primarily with autism.

Everything changed after modifications to the state’s Medicaid billing model forced the state to adopt new certification requirements last year, leading many longtime providers, including Welsh, to leave the system. Welsh saw her last patient in October 2023 and now works in adult disability services with Square Pegs for Families in Lee’s Summit.

“They lost a lot of behavior specialists because we weren’t board-certified behavior analysts, despite the fact that we had the training ... I’d been doing it for 12 years,” she said. “To some extent I understand ... but that means families are not getting services. You might only get a speech therapist then twice a month for an hour each time, an occupational therapy to even a lesser degree.”

The shortage of providers comes as more and more children are joining the program each year. Data from the Missouri Department of Elementary and Secondary Education shows 9,662 children were involved with the program in 2023, an increase of 2,370 children from 2018-2019. In Buchanan County, nearly 150 children were served in 2023.

“Of maybe the 14 or 15 behavior specialists and or behavior consultants of Kansas City area in particular … only two of those people were board certified behavior analysts. So it’s really likely that you are losing 12 providers in the Kansas City area,” Welsh said. “And if you go northwest, then they’ve lost 80% of their providers.”

Gov. Mike Parson and the Missouri Legislature have responded by boosting program funding by $21 million from $53 million in 2022 to $73 million in 2023. By comparison, Kansas allocates a fraction of that at $11.9 million annually for its identical Infant and Toddler’s Program for children with developmental disabilities.

Missouri has also boosted support by creating the Office of Childhood in 2022 to help administer state and federal funds to support services that assist children. The office’s primary goal is to help unify childhood programs that were previously fragmented across state agencies.

Welsh has heard many similar stories and understands the challenges that families like Clark’s have gone through to find child care services and assistance in the midst of balancing everyday life and taking care of their child’s specific needs.

Headway in the face of limited resources

St. Joseph isn’t immune to some of the same staffing and service gaps that are impacting the region, but many local organizations are consistently looking for ways to strengthen programs, identify needs and bridge services and partnerships with other organizations to help reach as many families and children as possible with limited resources.

Bobbie Cronk, United Way Director of Children’s Initiatives, is front and center doing just that with the help of the Success by 6 program, one of the non-profit’s driving initiatives. Spreading awareness of what’s available in and around St. Joseph can be just as vital as the services themselves to ensure that parents are taking advantage of services to help their child’s development.

“It’s just so hard with a new parent knowing what’s out there and where to connect to and what is really worth your time and what is going to make a difference for your family. You’re learning how to parent,” Cronk said.

If an organization isn’t able to provide the necessary services to help a child or family, they can connect them with other services like Community Action Partnership’s Head Start program, United Cerebral Palsy and the St. Joseph School District’s Parents as Teachers program, a free service that brings educators into the home to review key developmental milestones once a month.

“We try to bring those different organizations to the table to look at, you know, where are the hiccups in the system?” Cronk said. “How can we maximize what is a pretty limited pot of resources to make the biggest difference for the families?”

United Cerebral Palsy helps contract with local school districts to provide key early intervention services and integrated preschool programs that connect children with and without disabilities in the classroom. The organization’s Equipment Lending Library also gives families access to multi-sensory equipment and toys.

Cordonnier said several versatile therapists with UCP are also providers within Missouri’s First Steps program.

“One benefit here at UCP, our providers, we do a lot of professional development. One of our speech therapists is a feeding specialist. So if there’s a child that has a special need regarding feeding, she’s able to provide a specific service for that child,” Cordonnier said.

In the face of industry shortages for many key provider positions, Cordonnier sees opportunities for the district and local organizations to work together to encourage local students to explore various career paths in those areas.

“Getting the word out there, letting students come and observe, we do observation hours shadowing a year and I don’t know if the district can work with high school students. I know they visit Hillyard to see those programs. It would be nice if they could introduce them into early childhood therapy options,” she said.

Another key pillar in St. Joseph’s network of services, the St. Joseph School District, has had to be proactive over the last two years looking for creative opportunities to navigate around the same statewide challenges staffing for speech language pathologists.

“We have had quite a shortage in that job. And so we have had to reach out and through contracted staff to be able to get some other SLPs on staff to make sure that we service all of our needs,” St. Joseph School District Director of Special Programs Dlo Duvall said. “So it is imperative because, at certain milestones at different ages, there’s different sounds that a student is age appropriate for them to be able to make.”

In the same vein, district officials have seen a significant drop in student speech and language readiness in the years following the COVID-19 pandemic.

The district has emphasized adding additional bilingual providers to its Teachers as Parents program and expanding its use of tele-therapy services at all levels to reach more families and children.

“Our partnerships, we have grown this year and so we’re going to continue to do that,” Duvall said. “We want parents to know kind of where their child is developmentally and if there are any concerns or if there’s not, and making sure they’re on target.”

Hope for the future

Once a year, Clark and Kennedy make the nine-hour drive on U.S. Highway 36 to the Children’s Neuroscience Institute in Aurora, Colorado. There, she’s able to get access to advanced medical services and work with doctors who’ve seen the STXBP1 gene mutation in many children.

Before that, she was regularly making trips to Kansas City for all the different therapies and clinics critical to Kennedy’s development like neurology, development clinics, feeding clinics and additional therapies.

“If I need anything for Kennedy, I pretty much have to travel to Kansas City,” Clark said. “It got to be a lot. An hour there, an hour back, She needs all those therapies. And it just wasn’t feasible for me to drive down there all the time like that.”

Even with a strong number of pediatricians and medical services in the area to help families and children with developmental disabilities, Kennedy’s condition requires an advanced level of medical services that many places aren’t able to provide.

“I wish that somebody would open up a facility for children like Kennedy,” she said. “Children like Kennedy need one-on-one care.”

Kennedy was receiving physical therapy services at Mosaic for nearly a year before Clark said she was dismissed due to a lack of progress, something that she still doesn’t agree with.

In Clark’s eyes, St. Joseph is fortunate to have a place like the Helen Davis State School for the severely disabled. Kennedy has attended for the last three years after transitioning out of Oak Grove Elementary due to challenges with her care there. Helen Davis can provide Kennedy therapy services in certain areas.

An expansion of before-and-after services at Helen Davis and other facilities for kids like Kennedy would help her family and fill a much-needed area in the community, Clark said. The sentiment is echoed by other parents in the community as well.

“That is something parents are wanting and that’s hard to do … that’s something that I do know is lacking,” Cordonnier said.

Despite numerous challenges throughout Kennedy’s life, Clark has always stayed strong and positive for the sake of her family and believes her daughter will continue to make strides in her development.

It’s been nearly two and a half years since Kennedy’s last seizure. Clark is holding out hope she’ll hear her daughter say the word ‘mom’ one day.

“I just felt in my heart that she was going to be OK. And she is,” Clark said. “She’s thriving. She’s doing great. She’s doing better than they thought she’d do.