Dr. Mary Khetani’s lab and their partners at Rocky Mountain Human Services talk about the tool they are using to improve parental involvement in early intervention service plans for the youngest of children with developmental disabilities or delays.
Mary A. Khetani, PhD
Associate Professor, Occupational Therapy
University of Illinois Chicago, College of Applied Health Sciences
Research Assistant, PhD Candidate
University of Illinois Chicago, College of Applied Health Sciences
Organizations & Initiatives:
UIC Children's Participation in Research Lab, Follow us on Twitter
Rocky Mountain Human Services
Early Intervention & Contacts by State
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So the advice I would give is just be open to the research because you're going to see the quality of service. You're going to see the benefit within your families by collaborating in that research capacity because you'll learn more about how you could sharpen your best practice tools and skills. And these are such exciting opportunities because it gives you such valuable insights to the community that you're working within.
0:20 [Voice Over Introduction]
Welcome to Collaborative Endeavors, a podcast about how scientists from different areas of research come together to tackle big health challenges, leading to better therapies and healthier communities.
For nearly six years, Dr. Mary Khetani has been working with colleagues at Rocky Mountain Human Services, home to the largest early intervention program in the Denver metro area. Dr. Khetani is an associate professor in UIC’s College of Applied Health Sciences and also directs UIC’s Children’s Participation in Environment Research Lab- or CPERL. Also supporting the lab’s efforts is Vera Kaelin, a research assistant and PhD candidate in rehabilitation sciences. Khetani and Kaelin began their careers as occupational therapists working with children with developmental needs, which can result from conditions like brain injuries, cerebral palsy or Down syndrome. They also work with these children’s families to help them sustain meaningful daily life.
For the last decade, CPERL has conducted rehabilitation research to build evidence for clinical practice, including Early Intervention. Authorized by law, early intervention is a service system that helps babies and toddlers with developmental delays or disabilities and is available in every state and territory of the U.S. as part of Part C of the Individuals with Disabilities Education Act.
Dr. Khetani described how challenges surrounding early intervention services led to the collaboration with Rocky Mountain Human Services- which I will refer to as RMHS from here on out.
We run a small but mighty research lab in Chicago and we’re partnered with brilliant practitioners in Colorado where our lab used to be housed until about six years ago.
It is becoming harder and harder for families to become eligible for early intervention services. When services become more restricted it heightens the need to really think about value-based early intervention and how can we deliver our services in ways that maximize the resources we have, that prevent provider burnout, but that also improve the fact that children and families have to be engaged with the set of services when they are eligible, and to do it as efficiently and effectively as possible so that they are able to engage in and adhere to the service plan as it's designed. And then we hypothesize that when we are able to deliver high-value services that those services will result in better outcomes. When I think about this work as we design more options and we try to begin introducing a broader set of options into the service system, or trying to improve the value of those services and how families can access those services and how providers can have flexibility in how they deliver those services without compromising, quality- it's part of that larger line of work to really build out the evidence for high-quality early intervention.
03:44 [Voice Over]:
To address this problem, Dr. Khetani and her team innovated by examining the use of an electronic tool called the “Young Children’s Participation and Environment Measure” or YC-PEM. Since 2008, multiple studies have developed and tested YC-PEM’s validity, reliability, feasibility, and acceptability as a parent-completed survey that captures a family’s expertise on their child’s participation results. Vera Kaelin explained the rationale behind the tool and what it can accomplish.
The tool that we are implementing in the service context of this project is the tool that assesses participation so it asks the parent how often a child attends certain activities and how involved the child is in those activities, and whether the parent desires a change in those activities and to also assess environmental barriers or environmental features that are supportive. This information can help to focus a lot on the child's participation. So an outcome that matters to family and that matters to their daily life. So this tool can help to set goals, and to set goals with priorities that the families mentioned and that yeah, that are important to them.
When you think about your own life, you participate in many activities- like I participate in morning routines at the beginning of my day. I participate in having breakfast with my husband, for example, I participate in playing with my child. So we do a lot of those activities and participate in those activities. And so does a child. My daughter participates- even though she's really young- she participates in dressing. She participates in diaper change. She participates in sleeping routines. So those are things that you do in life and that matter to us in life and that can change between people, right? Something that's really important to me might not be so important to you. So we all participate in different activities and those activities have different meanings to us and that's what we mean with outcomes that matter- it's really something that matters for me. It's really important that I can play with my child, for example. It's really important that my child has another child to play with and participate in play activities with other children. With this tool we try to capture what activity is meaningful for this particular family and what participation activities they want to change so it is really unique to them.
06:19 [Voice Over]: Dr. Khetani elaborated …
If we plug that beautiful description of outcomes that matter to families into like an early intervention scenario. So, like, if you had a family, a parent, maybe they've gone to their Primary Care, they've gone to the pediatrician's office for a checkup and they do that developmental screen. And then the developmental screen gets kind of a red flag and the pediatrician's office, you know, you we might want to reach out, I'd like to refer you into early intervention to see if you might be eligible for services, based on some of the developmental concerns that you're expressing here today during our visit. And so, then the parent gets referred and the entire gamut of assessments is based on the child's development their skills, like, what can they, can they not do and that's how we determine whether they're eligible for services. But for the parent that's going through that process, there are thinking in the back of their heads like: If I'm going to be part of early intervention services, what is this? What is this information about my child's development going to mean in terms of what's my life going to be like? How are we going to get through a day? Like what's a meaningful day going to look like? Can they have the same experiences as a family as I thought they would or as I would want to? These things don’t necessarily get solicited in designing services unless we’re very intentional.
07:49 [Voice Over]:
This is where the partnership with Rocky Mountain Human Services is key. In order to demonstrate YC-PEM’s practical value, Dr. Khetani’s team needed to see how it - and its accompanying decision-support tool- would fit into the everyday activities of a human service organization. Appropriately, RMHS’s mission is to embrace the power of community to support individuals and families in creating their future. For this agency that values evidence-based practices, integrating with an academic research team seemed like a natural next step.
Shannon Banks, an early intervention engagement specialist at RMHS, described the organization and its approach to early intervention for Denver area children and their families.
Rocky Mountain Human Services is a very large organization. We really support individuals with intellectual and developmental disabilities across the lifespan. So, we are always looking to grow and using our human services expertise to meet the needs of our community.
It’s really part of our mission statement to be person centered in providing the services that we deliver to our families, our kiddos, and clients across the board. So in this particular project, to be able to give families and opportunity before a meeting with their intervention team to think through some of the topics that are going to be discussed and give them an opportunity to put on paper or- electronically- their voice and what they want to see happen. I think it is a really awesome partnership because then we're able to go into meetings with our families with that focus and lens to see what their concerns and priorities are and be able to create a service plan and match them with a provider that is not only going to address the developmental needs of the child, but also be a good fit in the daily life of this family so that everybody feels part of the team. And that's so the services are really individualized and geared toward that family and that individual child.
10:03 [Voice Over]:
Jamie Bane, an early intervention service coordinator at RMHS plays a critical role in individualizing these services on behalf of both the agency and the study team. As a service coordinator, Jamie is the point person for families from the initial evaluation stage through the time they no longer require support. One of her responsibilities is receiving YC-PEM reports from the children’s families and integrating that feedback into the service plan.
Once families actually fill out the paperwork and have sort of gone through the process online, the reports are generated and then I will get the report back from one of our program assistants. We would then utilize that information that families have included on the report to then integrate the information into our annual plan. So that's kind of how we sort of integrate the two the two programs together and in the project in there. And essentially what that looks like is taking the information from the YC-PEM reports and using it to then help direct what the family's concerns and questions may be about maybe next steps or maybe where helped us to focus on maybe where they want their kids to participate more in. And that's really kind of helped us to generate some additional conversation about where the family priorities really lie.
We have also had families who maybe had more of an interest in having their kids participate more in those day-to-day routines and maybe it's, you know, diapering or getting their kids to be able to feed themselves with silverware. And so some of that stuff kind of comes up naturally through the report. Sometimes it's through notes that the family has included, but what I find is that a lot of that information is really helpful to help us then drive the conversation about what are the next steps going to look like? What are those goals going to look like really to help with a child's development and being able to address this family goals or concerns.
I think it's really changed how I've approached working with families is as far as just being able to make sure that I am cognizant about making sure that their voices being heard during meetings. A lot of times we may have therapist who may have a little bit of a stronger voice that say- I really think this is a good next step and family is like- okay that's great. If that's what she says, will go with her because she's the expert. But it doesn't always necessarily work that way as far as really what the family wants. And so it's really been helpful with us to be able to utilize the information to then break it down and identify- okay, these are really what the family's needs are. How can we also incorporate these needs into the plan to make sure that the plan is a little more meaningful for them?
For me, it's been a little bit of a shift in thinking and making sure that not only the families who are participating- but then my other families that I work with- that we're kind of making sure we're including everybody and inviting everyone to the table to make sure that they have a voice and that they don't feel like it's just the professionals who are driving this meeting, because that's not really how it should work. So I think that's been a really great opportunity to kind of step back and do that.
13:06 [Voice Over]:
Like many academic-community collaborations, the road to this partnership was not without its challenges. At the same time this project first received funding from the National Institutes of Health, RMHS was one of the early adopters of an innovative state-mandated initiative aimed at improving how they focus their services across the state of Colorado. This change in climate and its downstream impact on RMHS’s workload meant the partnership’s recruitment efforts would get off to a rocky start- pun intended. Here’s Dr. Khetani…
But what we did is we hit the pause button on our project. And while we hadn't been funded to address this issue of workload and how to make this research project fit within the workload parameters at that time, we ended up having opportunity to reflect and really put onto paper the lessons that we were learning. And what we ended up doing from there gave birth to the design of a research group that we co-designed together. And so we almost had to build the house that we were going to be doing our partnership in. And we weren't funded by the grant to build the house, but we did that work. And that's why we are where we are today is by doing that invisible work to build the house that that we wanted to be in to partner and live together in for a long time.
14:43 [Voice Over]:
A critical part of this “house” as Dr. Khetani put it, was designing the role of an on-site contact who could oversee the team of service coordinators in addition to managing communications with the Chicago-based research team and handling study data. This is part of Lindsay Kuznicki’s role as an early intervention supervisor at RMHS.
First, I have to say that we couldn't be luckier to have the team that we get to work with. We all value, you know, responsiveness and acknowledgment and ownership. We both really work hard to ensure that the research project is at the forefront of the work that we do each week. Vera is the one who typically joins our monthly meetings to check in with our service coordinators, see what the challenges or the highs and lows were of the month that they receive the YC-PEM report.
I think we have a nice balance, too, between our expertise being really more in that case management side while they're focused more on the research requirements. So when I first joined this team, I didn't really have a very strong background in research and so this has been such a wonderful opportunity for me to learn from them and vice versa from us and our wonderful service coordinators who have just taking this project and really run with it.
Vera is very helpful and listening and really incorporates our natural process and how can we bring that survey the YC-PEM data into those meetings so that it feels natural to our service coordinators and to our families because it's so important for the work that we do on our end that the family's voice is first and foremost.
16:09 [Voice Over]: Vera added..
I think what's being a special and meaningful to me is that we co-designed the intervention and so that we could make sure that we're what we're doing is relevant for the practitioner and really fits their workflow and their context, and when I think about what I would advise others is what has been really helpful for me is to have a coordinator on site. So that is not only helpful from a coordination perspective it really makes it feel like we both own that project and that it belongs to both of us.
Maybe it's because there was a rocky start, you know, maybe that's what’s needed to have a good collaboration. I think it was really nice to see how there on their side they didn't want to give up on this project. They were like no, even though we have these challenges now we're going to do this, and I think we learned a lot together despite those challenges- or maybe because of those challenges- and yeah ,we got far which is great to see.
17:21 [Voice Over]:
As the team members described, this partnership has been fortunate that the unforeseen challenges in its infancy led to a robust long-term collaboration that is not only beneficial but a point of pride for all involved. Shannon and Lindsay from RMHS shared some of the lessons they’ve learned throughout the process.
We want to be evidence based and doing what's best for our families and kiddos, and we get that information from the research and that side of the equation. So definitely a mutually beneficial relationship can be found within those partnerships. And I think it's super helpful to have the practical implementation of it, and Vera and the team they were just so wonderful in being like- here's what we need to get done and our goals for the research side of it and very clear on what that looks like and what they were needing. But would sit down and spend a whole meeting going through how can we integrate the tool and the research side of it into what our coordinators were doing. Or even with the recruiter that we used on staff, she- Vera- and I got together and talked about what made the most sense timing-wise with the workflow of what coordinators are doing. And I think that just made it really accessible for our staff to be able to participate and engage in something that is so meaningful and helpful. And we'll hopefully expand down the road.
There can never necessarily feel like a good time to take on an additional project for an organization because we're always constantly moving forward trying to find those best practice avenues and trying to stay current and relevant with the needs of the community. So by naturally having this project come in, as an organization that really appreciates and values evidence-based practices, this was kind of like a natural next step for us.
I feel like we've always valued research, because you really can't make operational decisions without understanding where you're starting from. And so, I just really appreciate the approach that we've taken because it is more direct- it comes from the data, we're seeing it. And so, having that evidence-based component has just really improved us as an agency. To know that we are dealing with developmental delays and that we've got the 0 to 3 time frame to get in there and make the largest impact and have the parents being empowered to provide, you know, the support to their child to shrink the delay or address the diagnosis or meet the need is such an incredible thing.
20:00 [Voice Over]: Dr. Khetani also reflected on what she has gained from the project.
I think in early intervention we're often underfunded working on shoestring budgets whether we're in research or practice. And I think that working together we’ve been able to negotiate and make very smart decisions about sort of building our house or building our community to be able to create practice- and the ultimate goal is to make practice the best as it can be. I think that it's extremely rewarding to be able to take smart risks, even though you're working with a smaller set of resources and then to see those risks have high risk, high impact. And so I think for me the lesson learned has been has been one of just being a good steward and being in a community where are just really good stewards of opportunities and resources to have to do that sort of work and research that's often times the work of unsung heroes. You know it's not super glamorous and it's not glamour glitter all the time. It is a lot of really hard work that's invisible that goes into building evidence to make practices as best as it can be.
And so we are doing this multisite work and one would naturally think that the distance would make the work harder and more cumbersome, but in actuality, I find it very energizing. Because when I come into this work- even though I'm in Chicago- I'm working with colleagues, and I'm reminded of the bigger picture and the potential scale of the work. And when I work with colleagues in Colorado and with my colleagues that I have the honor to mentor- I sometimes forget they’re students, I think of them as my colleagues- I feel a strong sense of belonging and purpose in having an impact in a service system that I began my career in circa 2002. So for me this particular partnership and project is very purposeful, it reminds me of the purpose of one's life work and the potential scale of that and it’s just really exciting to be able to create that work together.
21:56 [Voice Over]:
As they look ahead, the team hopes to firmly establish the effectiveness of their YC-PEM intervention for parents in three key areas: their involvement in shared decision-making, engagement in services, and their perception of family-centered quality care. They are also working with program stakeholders- including parents, providers and program leadership- to drill down on other factors that can support or hinder program implementation going forward. These data will be used to inform and scale the intervention for a more diverse range of early intervention programs at a regional and- ideally- national level.
The team members shared some of their aspirations for the future of this partnership and what it could mean for children and family participating in early intervention programs.
I think we'd also really love for this to continue to expand. Right now the project is really directed towards English-speaking families and we'd love for this to be for Spanish speaking families so that we can make sure that we're representing those families and that they have the same opportunities as our English-speaking families when it comes to be able to have their voice being front and center of these meetings.
I think early intervention is just the best thing ever. One of the things I love about the role that I'm in is I get to share widely the benefits that I have seen and heard from families who have participated in the program. And also coming from the school system for kiddos who are school-aged and over 5, I absolutely love that early intervention really is family-based and family-focused, and the skills that our therapists are working on the intention is always so that it increases the family's ability to engage and enjoy learning and spending time and experiences with their children. So early intervention I think is just absolutely amazing and I would encourage- and I do encourage- every parent that I run into, every grandparent, aunt, uncle, that if there was ever any type of concern or worry to at least reach out.
I want family to feel that their voice is heard and that they have an opportunity- multiple opportunities and multiple ways- to make sure that they're contributing and that that's reflected not only in the plan that we write down on paper- that helps us meet the requirements- but even ongoing in their weekly sessions. And that not only are their concerns addressed but that it will also hopefully open conversations into the wonderful and diverse cultures that we are so fortunate to have involved an early intervention and that I've loved meeting and getting to learn as a service coordinator and as the engagement specialist. I think giving them an open door we will hopefully get more families involved so that they can participate and reap those benefits as well.
24:52 Dr. Khetani
It’s interesting because I think we each see it different in our own ways like- wow, I wouldn't have ever thought I could accomplish that with this, right? And I think they experienced it and I experience it and I think that's what's special about it, is that we could reach that height, you know. And then there's some unanticipated successes and it’s very sweet to see that we have more to discover and more to pioneer. But I think we're in a good rhythm. We're in a really good rhythm now.
[25:27] Voice Over Outro
Collaborative Endeavors is produced by me, Lauren Rieger, on behalf of the Center for Clinical and Translational Science (AKA the CCTS) at the University of Illinois at Chicago.
To learn more about the research discussed in this episode, visit the links in our show notes.
The CCTS is supported by the National Institutes of Health’s National Center for Advancing Translational Science through their Clinical and Translational Science Award. The views expressed in this podcast are our own.
To learn more about how you can get involved in health research, visit ccts.uic.edu or follow us on Twitter @UIC_CCTS.