Missouri Disability Empowerment (MoDE) was the ultimate grassroots organization wanting to impact policy–by a small group of mothers Their goal was to seek insurance equity by expanding the coverage mandate beyond autism alone. After accomplishing this insurance coverage expansion, MoDE was born when they discovered and wanted to create an avenue to voice concerns and challenges for children with disabilities. Today, their leadership has grown to be champions of legislation to ensure parents have the ability to record IEP/504 meetings and bringing transparency while minimizing the use of seclusion and restraint in schools. In the 2021 legislative session, they debuted #flatMoDEkids in the capitol with major success on social media–once more raising the profile of children with disabilities in the public policy sphere. These moms (and dads!) are unstoppable and Kids Win Missouri is grateful to partner alongside them.
How does your organization work to improve child well-being in your community or in the state of MO?
Our mission is to empower those with disabilities through grassroots advocacy and by promoting inclusivity. Recently, most of our work has been focused on issues related to children with disabilities and special education. We have worked to make habilitative therapies more accessible, promote universal restroom designs, support families through the IEP process, and advocate for laws to protect children with disabilities.
What policy change would you most like to see to support child well-being in our state?
We would like to see Missouri pass a law to place guidelines on seclusion and restraint in public schools (HB387). Our state has one of the weakest seclusion and restraint laws in the country. BIPOC (Black, Indigenous, or People of Color) students and students with disabilities are disproportionately secluded or restrained in our schools. Seclusion and restraint are used as forms of discipline with no guidance on the parameters of their use. There is no legal requirement to notify parents, the school district, or DESE when a student is secluded or restrained. State guidelines would keep children safe by limiting seclusion and restraint to emergency situations only and requiring significant documentation.
Why do you think it’s important for our state to invest in children?
We often remind people that children with disabilities usually grow up to be adults with disabilities. If we can give them the supports they need as children, individuals with disabilities have a better chance of being more independent as adults. We want inclusive workforces and neighborhoods. This begins with inclusive schools and making sure children with disabilities receive necessary therapies, an appropriate education, good healthcare, and family support.
What do you like most about being a member of Kids Win Missouri?
We love the community and partnerships created by Kids Win Missouri. Networking is vital for getting policy change. MoDE consists of a small five-person board and volunteer advocates who are relatively new to the world of policy change. Kids Win Missouri has given us a team where we can ask questions, learn about other policy concerns which impact children with disabilities, and find like-minded people who support our priorities. We also have been able to support Kids Win Missouri by bringing a disability lens to discussions related to early childhood, health & mental health, safety & security, and education.
Check out MoDE in the news–House bill on recording IEP, 504 meetings passes unanimously