At the Children’s Services Fund, we believe all children are valuable, vital members of the community, and we’re committed to giving every one of them an opportunity to access services that help them thrive.
This month, we asked Sarah Mai, Executive Director of Down Syndrome Innovations, a CSF-funded nonprofit, to tell us how Down Syndrome Innovations’ partnership with CSF gives individuals with Down syndrome and other developmental disabilities access to life-changing mental health support and services that empower them to live to their fullest potential.
Down Syndrome Innovations is the primary service provider for people with Down syndrome in the Kansas City Metro and the Central Missouri region for nearly 40 years, serving 850 families every year.. They focus on supporting skill development and empowering people with Down syndrome to reach their personal best, and they offer continual support throughout the lifespan by meeting families and individuals where they are now and preparing them for what’s ahead.
According to Mai, the team at Down Syndrome Innovation has a responsibility to establish best practices for serving people with Down syndrome, especially in developing life skills for home and community settings.
This is how their relationship with CSF of Jackson County came together. “Our team said, ‘You know what we’re missing? We are not focusing on the mental health needs of people with Down syndrome and other developmental disabilities.’”
Mai says that due to diagnostic overshadowing, mental health is an often-overlooked component of Down syndrome support.
Down syndrome makes it challenging for people to identify and communicate what’s going on inside their heart and mind. That’s where the idea for Down Syndrome Innovations’ Mental Health Services for Families to Support Life Trajectories for Children with Developmental Disabilities comes in.
CSF partnered with Down Syndrome Innovations to help address this unmet need.
Today, the team of therapists at Down Syndrome Innovations is a talented, passionate, highly intelligent group, motivated to be trailblazers in mental health practices and in shaping strategies, Mai says. They take a multidisciplinary approach to mental health by accommodating sensory and movement needs; it depends on their therapists’ expertise to problem-solve how best to achieve the outcomes needed for each child or adolescent.
Some youth benefit from a group environment where they can see others modeling behavior, engage with parents, and build relationships with peers by responding to and practicing with them. Others need individualized, one-on-one counseling. Home visits are also an option when clients have both Down syndrome and additional medical needs that make leaving the house difficult. “We have variations of our services, and the way CSF has funded us has allowed for that differentiation, which is very, very important to us.”
CSF primarily supports Down Syndrome Innovations’ mental health services for residents of Jackson County.
In addition to directly serving clients, Down Syndrome Innovations establishes and shares best practices for supporting the mental health and social well-being of people with Down syndrome and other developmental disabilities, tools that can be used anywhere.
“The goal is for people with and without disabilities to live together productively in society. But that happens when people are more regulated, and that really is our goal,” explains Mai. When people have the skills to regulate their emotions, communicate their feelings, and cope in difficult situations, it becomes more possible to be included in their communities.
Down Syndrome Innovations offers a variety of mental health services, including therapeutic skill building, mental health counseling, caregiver support groups, and more.
According to Mai, CSF makes their work feel seen. “We need partners to come alongside us and say, ‘Absolutely, you’re on the right track. Absolutely, we need to modify and accommodate how we address mental health for people with intellectual and developmental disabilities.’ That’s been one of the most powerful things,” she said.
Down Syndrome Innovations has a referral partnership with neighboring Johnson County, Kansas, and offers private-pay services for people from across the region; however, it’s the residents of Jackson County who benefit from CSF’s support. Mai reports that residents are grateful to know that there are people in their own community who care enough to invest in them.
“There would not be the strength of our mental health services without CSF. Period,” Mai explains. “We know we are an atypical organization to get funded. And we take serious responsibility in that we want to show the outcomes; we want to document the outcomes, we want to prove with the data that this investment is making a difference.”
With the help of CSF, Down Syndrome Innovations has strengthened its impact in Jackson County by demonstrating that mental health is important for the overall well-being and success of people with diverse abilities, and with the right support, they can learn skills and make progress.
