“Lots of schools offer lots of things for all children, but you really just need to focus on, like, what can this school do for my child? How can this school best serve my child to be  better and fully independent?”

Samantha Montgomery

Today’s guests are Samantha Montgomery,  Director of Service Coordination for the St. Louis Office for Developmental Disability Resources. Samantha sits down with Staci to discuss how she advocates for children with Developmental Disabilities and important advice for parents navigating the school system. 

K-12 story

• Started out in Central West End
• I attended preschool in the city for kindergarten through fifth grade
• Ascension grade school through the fifth grade
• We moved to Our lady of Guadalupe in Cool Valley
• Attend Residencane High School, which is now Residencane Academy.

What inspires you to do the work that you do? 

• A love for people just working with people, helping people be their best selves.
• She wanted to do some type of social work, and it just kind of led me into the field of developmental disabilities
• Started out working with Mer’s Goodwill as a job developer. So that’s somebody who takes individuals out and helps them to find employment
• “I feel like individuals with developmental disabilities, when they can be self sufficient, when they can be more independent, they can give back to their communities. And I enjoy being the person that helps them to be able to do that.”

What is a developmental disability? 

• So a developmental disability is a delay in cognitive development, and it can create a substantial functional limitation in one of six major life areas.
• Mobility, learning, recessive and expressive language, self direction, self care, and economic self sufficiency

So how does the Office of Developmental Disability Resources support those individuals and their families. 

• We are what’s called a Senate Bill 40 board
• There is our funded services side, where we use a tax to fund different programs that specifically cater to individuals with developmental disabilities.
• Fund programs around employment, socialization, respite therapies, adaptive equipment.
• Then on the other side, you have targeted case management and targeted case management bills, Medicaid, in order to fund that program
• We have case managers with caseloads of 35. So we have very small caseloads, very dedicated service advocates 

Speaking of school systems, how does your office support parents or students? 

• Service advocates are able to attend IEP meetings
• We are able to help parents with maintaining housing because their housing affects their child’s housing
• Help with in home therapy, in home parent training, respite for parents who need a break to go do other things or spend time with other children in their home. 

What are some of the challenges that are facing families who have students with developmental disabilities in the education system?

• One of the biggest challenges is parents not knowing what services are available to them and then not necessarily knowing what their rights are.
• “We get a lot of parents that come in and just like, well, my child has an IEP, but the school says they can’t do XYZ. And when you have somebody there to advocate for you to say, no, this child does need these things.” 5:15 – 5:35
• We can help them just navigate those kind of governmental agencies, reviewing and understanding their mail, making sure that they’re responding to correspondence in the correct way

So what exactly is a social worker or a case manager? 

• We call our case managers service advocates, because that is a more accurate description of what they do
• We are indirect case managers to where we are more so helping you connect with those direct services
• They make sure monitor those programs to make sure that they are delivering the services the way that you need them to be delivered.

Where do the misconceptions come from about social workers?

• I think that they do come from people’s experiences. Word of mouth travels.
• It’s just a stigma just based off people’s experiences and then what people say that their experiences are
• Then the population that we work with. We work in the city of St. Louis where people aren’t necessarily wanting you in their lives. They’re not necessarily wanting you in their homes. They’re not wanting you in their personal business. 
• Sometimes that comes out of embarrassment. Sometimes it comes out of fear. And I think just all of that compiled just makes it a situation where they’re a little bit more resistant. 

What do you think are some things that parents who have children with developmental disabilities should consider when they’re looking for a school in the city of St. Louis? 

• What you really need to look for is somebody who’s willing to be your partner
• You need to go into the school, look at the environment, meet the teachers, see what types of innovation technology that they have that they can offer your child. It needs to be specific to your child
• “Lots of schools offer lots of things for all children, but you really just need to focus on, like, what can this school do for my child? How can this school best serve my child to be  better and fully independent?”

Since you’ve been doing this work. What are some of the bigger changes or things that you’ve seen that have given you hope in how school systems deal with students with developmental disabilities or kind of the stigmas that families might experience? 

• I think the schools embracing different methods of, or embracing bringing those children with developmental disabilities just into the classroom
• When I was younger, children with special needs would be removed from the classroom
• “Those children, developmental disability or not, should be immersed in their classroom with their classmates, given the opportunity to interact socially to gain those necessary skills that they’re going to need when they become adults”
• The fact that the schools are embracing more of that model, using more technology so that kids with developmental disabilities can interact and without very much disruption, I think that’s what gives me hope. 

So what advice do you have for parents who are just looking for ways to help other people understand what they’re going through, but also to cope with these experiences on a day to day basis? 

• “My advice is to not be afraid of asking for help. You don’t have to do this on your own to know that you don’t have to do this on your own to get a partner, know that there are services out there to help you start early, the earlier the better, especially when it comes to therapies.”
• It’s just to stick with it
• Take the opportunity to get respite care, which is so parents can have a break because you need a break.

What advice do you have for people whose immediate communities might not be as receptive to those interventions to help support them in making that decision to move forward for their child? 

• That’s where the case manager kind of comes into play
• We have a lot of families that have different cultures. We are very cognizant of that
• Ask about religion, culture, what things that they would like for us to respect. It’s all about building trust
• So when we form those relationships and we can work with that parent over time, it might not happen right away, they might not agree to therapies right away. But the more that they work with us, the more that they trust us, they might be more willing to take that advice and say, let’s just try this and see how it goes

And what ages can families begin services with you guys? 

• 2.5 and up

how do people find you or get connected with your services? 

• STLDD.org