Editor's note: This text-based course is a transcript of the Continued Learning Podcast: Occupational Therapy And The Transition To Adulthood And Employment, presented by Andrew Persch, PhD, OTR/L, BCP, and Dennis Cleary, MS, OTD, OTR/L.
- After this course, participants will be able to:
- Identify occupational therapy’s unique role in postsecondary transition planning.
- Recognize how OT can improve life outcomes for students with disabilities through increased occupational therapy practitioners’ participation in transition planning, assessment, and intervention.
- Identify occupational therapy practitioners’ participation in postsecondary transition planning and services by identifying assessment and intervention strategies.
Dennis: Welcome, everyone. My name is Dennis Cleary. I'm a Senior Researcher and Assistant Professor at Cincinnati Children’s Hospital Medical Center. I'm happy to be joined today by Dr. Andy Persch, an Assistant Professor at Colorado State University. Andy, do you want to introduce yourself and talk about your background and how we came to this room today?
Andy: You bet. Thanks, Dennis. Glad to be here. My name's Andy Persch. I've been an occupational therapist for 15 years. I started my career in Madison, Wisconsin, working with children in special education of all ages ranging from three to 21, with the transition to adulthood in public schools. Working in high schools and seeing the transition experience of youth and young adults with disabilities and their families got me interested in research in this area. I moved from Madison to Columbus, Ohio, in 2011 to start a PhD at the Ohio State University, and I guess that's where. This is where our paths crossed, Dennis.
Dennis: That's right. We were both fortunate to be mentored by Dr. Jane Case-Smith, a leading occupational therapist working with children and adolescents. She sadly passed away a few years ago, but her textbook and legacy live on. It is Case-Smith's Occupational Therapy for Children and Adolescents.
Do you want to talk about what you started your PhD in and what brought you to the work that you're doing today?
Andrew: I started with a broad interest in pediatrics with a specific interest in the transition to adulthood. Well known in pediatrics, Jane was at a point in her career where the children she had worked with in NICUs and early intervention were now becoming young adults. Now, those two and three, and four-year-olds were in their 20s. These cases were straightforward and real examples for Jane that despite great therapy early in life, an individual's needs changed and evolved. She supported us in looking at the transition age and occupational therapy's role in that space.
One of the exciting things going on at Ohio State in 2010, and what brought us together along with Margo Izzo, was that it was awarded a TPSID grant for transition programs for students with intellectual disabilities in higher education. We looked at how we serve and support youth and young adults with intellectual disabilities on college campuses?
Dennis: I think the great thing about Jane is that although she was a researcher, she was always aligned with practitioners. She wanted to create assessments and interventions that could be useful for practitioners. I think we are trying to carry on that legacy. As she was such a pragmatist, she didn't like that she had done all this work with these kids when they were younger and that their life outcomes weren't always that great after they left high school.
Do you want to discuss a typical pattern for occupational therapy treatment working with school-age children?
Andrew: Occupational therapists work in the public schools under the Individuals with Disabilities Education Act (IDEA), serving children age three up until their 22nd birthday, or the year that they have their 22nd birthday. This is approximately 18 years of special education services and support. Occupational therapists have a role to play along the whole trajectory. Part of how I think about this is that roles change over time and at different grade levels. School-based OT includes working in early childhood ages (three to five), elementary-age children (kindergarten through fifth grade), middle school (sixth, seventh, and eighth grade), and high school age, which is typically freshman through senior year of high school or age 14 to 18 or thereabouts. Children with disabilities are eligible for special education up until 21 or the year that they're turning 22. High school is often longer than just four years for students with disabilities.
What occupational therapy does with those clients across the years changes quite a bit as they grow up. As I worked with younger children, my practice focused on developing self-care and adaptive skills to increase independence. Examples are helping kids with their mealtime or cafeteria routines, assisting with clothing for the bathroom, or increasing mobility out to the playground for recess. There was also a lot of focus on handwriting and fine motor skills.
At the older elementary ages, they're learning to read and write, which becomes a primary focus of occupational therapy at young ages. There is also a focus on sensory processing and self-regulation. We work with children who have sensory processing, executive function, or emotional behavioral disorders to explore, practice, and refine strategies to help them maintain their performance throughout a school day. There are a couple of common self-regulation curricula like, How Does Your Engine Run or the Alert Program. These are common and well known by OTs working in elementary and middle schools. We know there's a preponderance of children who have received OT who are discharged in the late elementary or middle school years once those immediate goals of self-care skills, handwriting, sensory processing, and self-regulation have been met.
Dennis: Why do you think many kids graduate from OT around the ages of 12 and 13?
Andrew: I think it's for several reasons. There are various stakeholders in a child's IEP and provision of academic services. For the most part, occupational therapists like working with younger children more than they do older children. Challenging behavior can sometimes feel cute and manageable in a five-year-old, but in a 12-year-old or an 18-year-old, it can be unmanageable and occasionally dangerous.
In my experience, most OTs that are interested in working with kids in the schools or pediatrics like working with younger kids during their early developmental years. We also know that early childhood development is plastic up until about the age of seven or eight. By the time a kid is 12 and 13 years old, things are slowing down a little bit, and the impacts of disability may become exaggerated. And the gaps between these students and their peers can become more significant. Additionally, the occupations of a middle schooler are self-organization, note-taking, and completing homework. Those are very different from what we tend to work on with kids at a younger age. I think that's a challenge for therapists and part of the reason why many students, who are otherwise eligible for OT services, tend to be discharged.
Dennis: In terms of younger students or middle school students starting to be discharged, what life outcomes do they experience, especially those with intellectual and developmental disabilities?
Andrew: I am very interested in outcomes. Data about postsecondary outcomes in the years right after high school is available through an extensive study called National Longitudinal Transition Study-2. It's about ten years old now but provides a pretty comprehensive snapshot of what postsecondary outcomes look like in the years right after high school. There are also other societal or governmental sources for these types of results.
In the years immediately after high school, people with intellectual and developmental disabilities go to postsecondary education or postsecondary employment at a rate of about 40%. That is much lower than other disability groups, which average about 60% to 70% participation in the population. It's important to note that that number is limited and doesn't include work done by people in the home, like caregivers raising a family in the home. Thus, across the population, the number is close to about 90% doing productive enterprise in their daily lives. People with intellectual and developmental disabilities completing productive enterprise is at 40% and is much less than that.
Dennis: What's the price for decreased employment and postsecondary education?
Andrew: It's a complex number to estimate. There are a couple of data points from the CDC. In the early 2000s, close to 20 years ago, the estimated lifetime costs to support a person with an intellectual disability exceeded a million dollars per person per lifetime. Those were healthcare costs, direct support services, lost productivity, and tax revenue. Recently, there's been more attention paid to autism and autism that co-occurs with intellectual disability, and we've had some better estimates. A recent estimate for a lifetime cost for a person with autism was 1.4 million per person. For a person with autism and a co-occurring intellectual disability, the forecast was 2.4 million per person per lifetime.
While we do see some better numbers in the years immediately after high school, those numbers don't usually go up. Instead, they tend to go down in a slow negative trajectory across a lifespan. Then if we look at the employment of adults with disabilities, those numbers look much lower.
If we look at census numbers, the American Community Survey, or VR data, there's a lot of variance around those estimates. Still, it's probably closer to about five to 15% of the population of people with intellectual disabilities that maintain employment as adults. I'm particularly interested in optimizing an employment trajectory so that those adulthood outcomes look a bit different.
Dennis: In addition to the financial costs, what are some other costs that the individual, who doesn't have a regular set schedule going to work, incur?
Andrew: Employment is a primary occupation. The consequences of unemployment or under-employment are substantial and will affect the individual and their support system, structure, and socioeconomics. Health and quality of life, connectedness to family and friends, independence, and community transportation are strongly connected to one's employment.
Dennis: You, for example, met your wife on the job.
Andrew: That's right. We did meet on the job. Employment creates a connection to other humans in the world.
Dennis: Can you talk about how occupational therapy might be different than other professions in the public school like teachers, speech-language pathologists, PTs, psychologists, and ABA practitioners.
Andrew: Well, I don't know that it's necessarily unique to the schools, but occupational therapy, in my perspective, has the broadest scope of practice of the professions that you mentioned. The domain of concern is all of the essential human occupations. Within the context of the schools, occupations addressed within the academic framework are educationally relevant. As a child grows and occupations change, there is increased potential for more occupational therapists to work in this area. This is both a benefit and a challenge.
Dennis: Yeah. It's funny. A Canadian occupational therapist colleague talks about working with adolescents and focusing on things that will help them in their lives. And if you're working on something that isn't going to help them at 21 or 22, like work, play, or self-care, why are we doing it?
Andrew: Yeah. One of the things that is happening as a child is growing and coming to high school is a bit of a perspective change. Inclusion in the least restrictive environment is a key principle of the IDEA. That means that children with disabilities experience the best outcomes when they're educated alongside children with and without disabilities in the regular education environment to the greatest extent possible. The IDEA is very much targeted at academic and social benefits of inclusion, and they're substantial.
As kids get older, it becomes more and more challenging to achieve inclusion in regular education settings. For example, by the time someone's getting to a middle school class, say social studies, they may be many grade levels below that sixth-grade social studies curriculum. And what they're doing in the classroom is markedly different from what most kids are doing. By the time kids then get to high school, to your point, what is their postsecondary target? Is it postsecondary education? If it's education, staying in classes and completing those classes will be essential. But probably most of the students that we're talking about are not going on to postsecondary education.
So, if post-secondary education isn't the target, what is? There are two special ed metrics called Indicator 13 and Indicator 14. Indicator 13 looks at IEPs focusing on transition, and districts are responsible for having transition goals on the IEPs. Indicator 14 looks at where students are after high school. What is the transition outcome? It looks at three areas: postsecondary education, postsecondary employment, or community participation in living.
Let's go back and think about a middle schooler becoming a high schooler where we have encouraged inclusion and adaptation of the curriculum. If a 9th-grader is not going to postsecondary education, spending time in that environment might become a barrier to their actual target. That's a significant shift of thinking for parents and teams.
Dennis: If they're not in the school, where should they be?
Andrew: I don't necessarily mean that they're not in the school. We have to be deliberate about where their time is spent because time in special education and under an IEP is a finite resource. We need to maximize that. Participating in settings like career and tech ed, specials, functional academic courses or special education courses, all-school assemblies, and in the cafeteria is excellent and appropriate. If someone isn't going to be moving towards postsecondary education, their time might be better spent preparing for employment or community living, including time spent outside of the school. It could be transportation training and planning a bus route to the grocery store or mall. They could then buy lunch at that destination, budget their money, and make change. These are all practical life experiences.
Another critical piece is paid work experience at the secondary level. This is probably the strongest predictor of postsecondary employment. I started working as a sophomore in high school when I was 15 at a minimum wage job in food service. Those types of experiences are essential for people with disabilities as well. They could also volunteer or do internships.
Dennis: I know some federal legislation has helped with transitional plans, including IDEA. By the age of 16 and even younger in some states (Florida dropped it to age 11), there should be a transition goal for life after high school. The Workforce Innovation and Opportunity Act, Pre-Employment Transition Services, and the connection of vocational rehabilitation (VR) have all made a big difference in the last seven years. Can you talk about those three buzzwords?
Andrew: You bet. Even before you went to Project SEARCH, we learned about the power of interprofessional and interagency collaboration in supporting a transition outcome. Project SEARCH brings special ed, VR, DD, and an employer, student, parents, and family all to the table. The Workforce Innovation Opportunity Act, which passed as an extension of the Rehabilitation Act in 2014, has a few initiatives that facilitate transition planning and interagency collaboration.
I think you are alluding to Pre-Employment Transition Services, or pre-ETS, as part of vocational rehabilitation. I believe 15% of their funding is to support students at the high school level. This is, in contrast, to even a decade ago when I was working in public schools. Then, vocational rehabilitation was focused on supporting the student after they were done with school. Now, VR is at the table, assisting with transition goals for ages 14 to 16. I haven't heard about age 11 in Florida, so that's very exciting. Now, there are more opportunities for interprofessional, interagency collaboration. I know people are excited about having VR at the table sooner during the transition.
Dennis: I think many occupational therapists around the country have seen Pre-Employment Transition Services. For example, the school district will invite a rehabilitation provider from the community like an Easter Seals or a Goodwill. And some school districts are starting to bill for these services. Occupational therapists have an opportunity to be involved in this in either after-school or summer programs. We want students to access these jobs at 15 or 16 years of age.
I want to backtrack for a second. I work primarily with Project SEARCH, the most significant transition program globally. We have about 670 sites in 11 countries, including Iceland. There are over 525 programs here in the US. I love it as an occupational therapist because it's all real, and nothing is contrived. In their last year of high school, an intern works at three different internships. Hopefully, they will find a competitive, integrated job that gives them a career for life at the end of that year. I appreciate that shout-out to my employer. Do you have any advice for how occupational therapy practitioners can become more involved in this transition planning and eventually into transition services?
Andrew: Sure. The National Longitudinal Transition Study-2 is not a survey written to look at OT specifically, but there are some variables that we can look at that apply to us. We found that of the IEP eligible students with disabilities. There were 11,000 of them in this sample, and only seven and a half percent reported receiving occupational therapy or life skills training during high school. We take from that that the vast majority of students with disabilities are not receiving occupational therapy services during the high school years, despite their eligibility. That's the uphill battle we've been fighting for about the last decade. It has been encouraging to see increased interest, including publications, presentations, and conferences on this topic.
Dennis: The Ohio Occupational Therapy Association has a very active occupational therapy transition interest group with, I think, over 150 members. Please don't quote me on that, but many people are involved.
Andrew: There is a need and an opportunity for OTs to get more involved in transition services in a diverse and varied way. You can advocate with your colleagues and supervisors for an increased role at the middle school and high school levels at the individual level. This is not always easy. As an employee, you have to live and work in your environment, whether in a school district or a VR provider, and things don't just happen overnight. Advocating for a role in transition planning may mean going against other people and traditional ways of doing things.
That said, I think there are a few strategies that we've tried to embrace. One is through education. As academic occupational therapists, we can add transition content to what we're teaching one class at a time. The more OTs learn about transition, the better. Another one is through research. We conduct research projects and disseminate the results of those projects to increase awareness and discussion. Those are more extended plays. In the short term, I think there are two practical things that OTs can do to grow transition. One is an OT referral at the point of any discharge. This was your idea, Dennis.
Dennis: Are you talking about RSVP at 16?
Andrew: Yeah. The transition from birth to three into the public schools is the first example of a life transition. This is moving from early intervention to special education, where there are new people, faces, buildings, et cetera. Using that transition as an example, we can talk to parents and kids about how occupational therapy can help them as they grow and change. It's great when we can impact self-care skills, handwriting, and sensory skills early on. That's great, but there are other needs down the line. I think being explicit with children and families that it's okay to ask for help is crucial.
The other thing that comes to mind is advocacy through the law when roadblocks in the special education process pop up. Use the law to your benefit. One of the keys that I would point therapists and families to is the first word of IDEA. It's the Individuals with Disabilities Education Act, an individualized education program. That means it's specifically tailored to the student with disabilities and the guiding principle. What is the student's postsecondary target?
Dennis: When I'm talking to groups of OTs, I like to talk about the PEO model that looks at the person, environment, and occupation. For instance, when a child (Person of the PEO) is being mainstreamed into a typical education classroom, they may be 11 or 12 years old. However, when we work on transition with them at 16, 17, or 18, that looks very different. The Environment looks at community experiences, and Occupation is employment training. Ideally, we need to involve the student and their family member(s) in this process as they are the only members of the "team" that may be involved for the entire course of their education.
In terms of that, can you talk about the research you are doing on assessments?
Andrew: Sure. I like your thoughts on the person, environment, and occupation factors and how these can change over five years between middle school and high school (12 to the 17-year-old range). Given that amount of change, I think an assessment is imperative to make some decisions based on that data. However, we should not make decisions based on just one data point. I look at multiple domains and assessments. One thing that comes to mind is the tool you and I created called the Vocational Fit Assessment (VocFit). The Vocational Fit Assessment is a job matching tool. It assesses a person's abilities and the demands of a job and then quantifies the fit between the demands and clients' abilities. The tool can help people decide what jobs or internships are good choices and what skills to target.
Additionally, one of the critical predictors for positive postsecondary outcomes is a student's level of self-determination skills or critical thinking executive function type skills. Out of the University of Kansas, Karrie Shogren has the Self-Determination Inventory. This special education frame of reference applies to occupational therapy and vocational rehabilitation; thus, I would highly recommend it. Another is the Pediatric Evaluation of Disability Inventory - Computer Adapted Test, or PEDI-CAT. The PEDI-CAT is appropriate for transition-age youth and gives a pretty lovely snapshot of functional skills in self-care, social, and mobility domains.
Dennis: Those are quick assessments in terms of time and effort, and you get a lot of information in exchange. How long does each one of those assessments take?
Andrew: I think VocFit, PEDI-CAT, and SDI all take about half an hour to get good relevant data and are age-appropriate transition assessments. And the postsecondary goals that are on an IEP by law need to be based on age-appropriate transition assessments. As I said earlier, it is essential to use many assessments or data points. There are lots of assessments available. If you need to assess motor skills, you could use the Bruininks-Oseretsky Test of Motor Proficiency. You could use the Vineland Adaptive Behavior Scales if you need adaptive behavior. None of these are perfect tools, but I think they provide us with a more holistic picture and can help us target someone's occupational needs for their age. We can again use the PEO model also to guide us. Our challenge is to leverage all this information and move it towards intervention.
Dennis: Yeah. We've been working towards this, especially with one state's Department of Education and their Special Ed Director of Transition Services. Many times teachers complete observation only. Occupational therapists can assess using the tools mentioned earlier, like VocFit. This can provide crucial data to teachers that often have not had as much training looking specifically at the connection between the person, environment, and the occupations that they're performing. Using age-appropriate transition assessments and language can get your foot in the door.
Andrew: I agree. It supports our interventions and services and guides the team for the desired outcome, Indicator 14 of postsecondary education, employment, and community living participation.
Dennis: This is not a commercial for vocfit.com, but VocFit is based on US Department of Labor data. VocFit focuses on employability skills and does an excellent job of matching people to employment and measuring change over time. Vocational rehabilitation and education partners are interested in this data. You've talked a little bit about assessment. Can you talk about intervention and some of those things that occupational therapy practitioners can do in and out of school?
Andrew: There are undoubtedly many things that we can do. Again, we need to make decisions using data. What are the evidence-based practices or predictors? What interventions during high school and special education are connected to positive outcomes? I will list some, and these aren't in any order of importance.
One key factor is facilitating parental involvement in the IEP and transition planning process. We want to help parents set and maintain high expectations for their child, the student with the disability, and the team. Our colleague, Anne Kirby at the University of Utah, and I have published research on parental expectations. As in children without disabilities, when parents have high expectations of their children, the outcomes tend to be better. One of the ways to facilitate this is through parental involvement in the IEP or transition planning process. A couple of curricula or learning modules are focused on that. For interested therapists, I would direct them to the Zarrow Center for Learning at the University of Oklahoma, where you can find some of these freely available materials. To help to facilitate parents' involvement, we need to educate them on the critical components of advocacy laws. For instance, what is free and appropriate public education or the least restrictive environment? How does this change as the child gets older? There are some concrete things we can do to engage parents.
We've also talked about self-determination. We can increase the dose of self-determination instruction, training, practice, and skill-building. The more opportunities students have to practice and develop those skill sets, the better the outcomes. Fortunately, there are several evidence-based curricula in special education that target self-determination. There are also structured curricula that align with Karrie Shogren's Self-Determination Inventory.
Dennis: We can also encourage occupational therapists to see what is currently there instead of recreating the wheel. Some national transition centers have excellent evidence-based practices that we will add to the supplemental information as part of this podcast.
Andrew: The other key area where OTs can focus on is early and frequent experiences with employers. This could be volunteering, being an intern, or having a first job as a high school student. More time and experience engaged in employment will be linked to better outcomes.
Dennis: Even pre-employment can be impactful. There's good evidence showing that the involvement of any child in chores at home helps them have better long-term employment outcomes, which I try to remind my 18-year-old daughter regularly, and she doesn't always buy.
Andrew: Pre-employment is one of the implications for OT as we think about employment outcomes. How do we work towards employment skills and approximate that learning at younger ages? You mentioned the correlation between chores and a positive effect. This is one of the things OTs might focus on at the middle school. We can have the middle schooler keep their locker or binder organized. They can have a checklist of chores. These activities are tied to success in high school and after. I also wonder, then, what might we do with even younger kids? Does a kindergartner sitting at circle time with hands and feet to themselves on their carpet square or cleaning up after themselves provide skills for later employment outcomes?
I am excited about transition times in pediatrics and how occupational therapists can intervene to improve outcomes.
Dennis: Great. Overall, would you say that occupational therapy is a good investment for school districts, particularly with the older ages? And if so, how are we able to demonstrate that?
Andrew: That's a complicated question. I know that OTs are worth it, and at the simplest level, it's the early intervention argument. It is vital to intervene early to prevent spending down the line. I believe that investment in OT during the school years would be a better use of resources than support services for a lifetime after someone exits school. The catch is that there are different stakeholders, and the school's responsibility is only up until 21 or 22. And they don't necessarily see or get the benefit of that investment. Now, societally, I think we do. Still, it's hard to justify the increased investment when the outcome isn't measured or only minimally measured by the school districts in something like Indicator 13 or 14.
Dennis: I want to tell you a quick success story. We just started some new programs in Florida this last year. One of our rehab partners works with adults in adult programs but now has post-high school interns within the Project SEARCH model. This partner hired an OT based on hearing you and me present this information last summer. After they hired the OT, they called and said, "Now what do we do?" We are making some dents in increasing OT's involvement with this age group.
How would you suggest we talk with OT practitioners who aren't interested in working with this age group? Do you have advice on how to approach that?
Andrew: One of the things I talk to students about is that this practice area is part of the history of our profession. It is part of the shift of OT practice from mental health settings and institutions into public schools, with deinstitutionalization and the Mental Health Act. This is a process that has been 50-plus years in the making. However, the profession has lost its footprint in mental health. About half of OTs were working in institutional or mental health settings after World War II, and that's not the case anymore, with only about two or 3% of OTs working in mental health now. I like to say that even if you're not interested in pediatrics or working in the schools, this piece of practice is essential and relevant for the whole profession. We need people to be advocates and stewards of the profession. That's not a perfect solution, but I think it connects with the student who isn't interested in peds. We also need to have continued advocacy in this practice. I have not encountered a silver bullet to solve the problem, but we can use a multi-factored approach with sustained effort. We're starting to see increased work and employment in the space with more presentations and publications.
Dennis: It isn't everybody's cup of tea, and that's okay. In a school district, there may only be 1 or 2 OTs interested in this area. What parting advice do you have for an occupational therapist interested in starting down this path working with transition-age youth?
Andrew: The first thing I would say is that any work you do with this population and the profession in this space are valuable contributions. I think a shift of perspective on these postsecondary outcomes is needed. Once therapists understand these postsecondary outcomes, they can think about how the program and IEP connect to that target? Frequently, the program is not connected to the target. I believe this is a clear and discreet place where an OT can contribute to transition planning. What's the postsecondary target? What's the plan? And are they aligned like we think they're aligned? We need to make a connection between Indicators 13 and 14 and bring in the perspective of the person, environment, and occupation. This is a different perspective than the other members of the team.
Dennis: Wonderful. Thanks, Dr. Andrew Persch, Director of the Transition Employment and Technology Laboratory at Colorado State University, for your time and expertise. If you need to get a hold of Andy or myself, you can go to vocfit.com. I hope everybody has a great day.
Persch, A., and Cleary, D. (2022). Continued learning podcast: Occupational therapy and the transition to adulthood and employment. OccupationalTherapy.com, Article 5507. Available at www.occupationaltherapy.com