Today, we are meeting with Dr. Naomi Swiezy, the director for HANDS in Autism® Interdisciplinary Training and Resource Center and Dr. Tiffany Neal, the assistant director for the HANDS in Autism® Center to learn more about theSchool-Home Collaborative Network – a new initiative started by the HANDS in Autism® to address the needs of a community in a more holistic and comprehensive way.
Q: Dr. Neal, I’ll start with you. What was the intent behind the School-Home Collaborative Network?
Tiffany Neal: The intent and that is really tapped like a dual implementation where due to COVID, we saw that families and other caregivers were stepping into more of the teaching role. And we know that it’s important to bridge or work from that common foundational language and use common foundational strategies with in working with students that have disabilities or have a range of skills and abilities.
And so really being able to speak a common language or to better train and foster that continuity for students, but also a feeling of competency and assuredness on the side of the home and the families and caregivers that are supporting students was a really primary intent and something that we try to foster with the school being the main liaison that’s conveyed that information to families. But in this effort is really trying to work with a pilot group that will really help establish and help us learn more about what topics are central to that continuity and delivery of elearning or virtual learning or continuous learning materials, and then training the teams to really not only use a common language but also inform what delivery mode that should be in and what package that should be in. Or what’s most accessible for those that have less access to technology and materials? What are the bare minimums? And how can we get those out to individuals so that everybody’s able to implement learning and skills training with a consistent philosophy and a consistent approach to the extent that’s possible to best setup for our learners not only during this time of COVID and the pandemic but then moving forward in skills training. And then just determining and really giving them the tools to use more of a behavioral skills training approach where they’re able to share the information or discuss it or model it and put tools in their hands and then foster the coaching and implementation again to reduce the gaps that are occurring for our learners and improve outcomes in their virtual and home, learning and school and home collaboration overall.
Q: Dr. Swiezy, this question is for you. How does this initiative align with other work performed by HANDS in Autism®?
Naomi Swiezy: It does carry over from the other work that we do and working closely with the schools, really helping them to have the tools that they need to be able to implement effectively on site. But part of what we want to install with folks that were training, school providers and such, is that we want them to not only know what they’re doing and be able to implement it, but be able to teach others and serve as a model and support themselves. And that is a big part that is missed between the school providers and home providers or home hip caregivers – really being able to coach the caregivers in how to you know best help their student to be most effective at home.
A lot of times we hear families say you know homework, we couldn’t get the homework done or we don’t even try to do homework because of all the behaviors or all the concerns or just not feeling adequately prepared to be a teacher. So as Dr. Neal indicated, you know, especially in this time of COVID when the onus is on the family to really be able to provide the education, with the support of the school versus the other way around. It’s really essential that the school personnel be able to really be able to train the, the home providers as well.
Q: In your training, will you be following your HOUSE model curriculum framework? Can you tell a little bit more about it?
Naomi Swiezy: The house framework is where we, we call it a house, the framework – the HOUSE – because it’s shaped somewhat like this and we generally start our training with the foundational components, which have to do with really being proactive and making sure that folks have some basic skills to be able to support, putting those practice pieces in place. But then also move on very quickly to a very data-driven approach to determining what goals would be most appropriate, determine what teaching style would be most appropriate, implementing that teaching implementing the behavioral intervention. And then ultimately, as we move around the house and around the sides and the roof over to the other side is really to be able to teach skills that are appropriate and generalizable out into the community so that the skills that we’re teaching are actually something that’s functional for the particular students and their caregivers at home.
So in terms of this curriculum, as Dr. Neal indicated, we will be piloting various aspects of the curriculum, but really focusing a great deal on some of those foundational concepts – foundational pieces and implementation support that really have to do with again how to implement most effectively using positive attention and ignoring using collaborative and team like efforts in really programming for success in general,
Tiffany Neal: Yes, I think the building on the house model, we were looking to call out and again that’ll be part of what we do with the pilot group is our thought was to present those foundational strategies from the implementation support component. And not only get the parents perception of how that could be implemented or transferred into their setting, but the parent caregiver and home setting but then also from the school’s perspective, how can they better train or support families and caregivers in the implementation of that in their setting to better work on both sides and so giving a range of tools and helping them see different means of delivery. And what would be better received and different modalities? what tools need to be sent out? And really just getting some of that first-person perspective, to help form that overall component is the intent. So giving some tools he seen a sample of training and hearing the different terminology that could be used or ways it could be trained that we’ve used with different audiences and allowing them to not only experience but also have some dialogue about that to inform that final set or the drafted set that we would roll out at a broader scale.
Q: Can you tell more about the application process? Do you have minimum requirements for teams?
Naomi Swiezy: Yes. So currently, it’s open for application. And so folks need to already have in mind a team, or hopefully have the team already generated even. We definitely need to have an administrator on board and the administrator kind of being the lead of that team to provide some accountability, but also having teacher, family member. And we can have up to six or eight folks on the team. But definitely those components need to be a part of the team.
Q: Have you seen similar examples of an implementation model in the States? Have they shown positive results?
Tiffany Neal: I think the model of delivery is not novel, meaning that there that we know that user behavior skills training approach or coach or giving instruction coaching to deliver, or modeling and then coaching are successful in parents picking up skills or providers implementing skills with greater fidelity. But the more community engaged approach in its development is, I’m sure there are similar approaches, but it’s really building on that community based participatory kind of engagement model, where we’re really looking to get more first person perspective and have them engaged in the development process. So really facilitating that conversation is important. But then again, establishing the foundations is something that I think a lot of people seek to do and we’re trying to be much more systematic in that and then to derive kind of a manual or materials that that way it could be utilized with greater numbers and within systems that they would be able to support the continuity of that and to develop more buy-in for implementation of those.
Naomi Swiezy: I think also an important piece is that although you know all the federal guidelines and state guidelines, really.. don’t mandate but they guide us to make sure that families are engaged and very much a central part to the education of their their students. Families don’t always feel a large part of that and are not as integrated as purposefully. So I think that is something that is a bit unique here is to make sure that there is a very systematic and purposeful means of engaging, everyone together as equal partners and essential partners to this process.
Q: what supports are available to schools and community once the teams go through the initial training and engagement?
Tiffany Neal: Our intent is to continue to foster more and more communities of practice so that that way as people are going through a payoff or a benefit. While not monetary, it’s a free program that we’re hoping to deliver as a community service. But it’s really just to become part of that network or community that as the one team is and delivering or finding the successful means for meaningful parent engagement that they’re able to share, or network, or collaborate with others that might be in a very similar situation, whether that’s in regards to, you know, just getting some parents engaged. Or maybe on the flip side, the parents are really wanting to get engaged more and feeling some resistance that that just develops a broader network that that they can really build on and we can continue to facilitate but that they have other go-tos, as well as staying abreast of it and being able to continue to access and engage with the HANDS Center.
Naomi Swiezy: I think of it as an overall to another you know benefit is really, you know, again, working on that collaborative piece. Aside from even training on the mechanics, if you will, or the curriculum is again getting in a different kind of philosophical space in terms of what that homeschool engagement, and collaboration can look like. There are many due-process hearings and litigation that that come out of not being able to do that well. And so, it is definitely teaching a broader based skill, I think that will help in the long term.
The NeuroDiagnostic Institute and Advanced Treatment Center, the state’s psychiatric hospital, houses a state-of-the-art adolescent autism services unit and an innovative community partnership for sustainability and prevention of re-admission. The NDI adolescent autism services unit is a collaboration of Damar Services, Inc., the Department of Psychiatry at the Indiana University School of Medicine, and HANDS in Autism Interdisciplinary Training and Resource Center, also within the Department of Psychiatry at IUSM.
Today, we are meeting with Dr. Naomi Swiezy, the director for HANDS in Autism® Interdisciplinary Training and Resource Center and Dr. Tiffany Neal, the assistant director for the HANDS in Autism Center to learn more about the role of HANDS in Autism® in this initiative.
Q: Dr. Swiezy, let’s start with you. So what is the NDI and the adolescent autism unit in particular and how did it come about?
Naomi Swiezy: The NeuroDiagnostic Institute (NDI) is an initiative that has been put together through the State. The DMHA or Department of Mental Health and Addictions is really spearheading this initiative. And the operations are run through Damar services. And then collaboratively, IU School of Medicine, specifically the Department of Psychiatry with our psychiatrists or psychologists and also HANDS in Autism are partnering alongside to assist in making sure that individuals who are admitted to the institute are able to then go forth in the community and be a successful and independent as possible.
So the folks who are being admitted are individuals who are adolescent age – 12 to 18 years old – with autism or related disorders. They also have behavioral challenges that are making it difficult for them to maintain within their own communities. They might be referred through medical practitioners, or with school staff or community providers, or the parents themselves. Ultimately, there needs to be a medical referral or a medical provider that’s making that referral. But anyone can basically indicate the need for admission.
Through Damar services and through IU School of Medicine then there’s an interdisciplinary… multidisciplinary team who determines who is most appropriate for admission. The referrals can come from all over the state. And ultimately, the idea is to be able to stabilize individuals that are having difficulty within their community; being able to conduct some assessments behaviorally and otherwise medically; and then to provide some intervention, suggestions, recommendations get that started and then promptly transition them out into the community.
Q: Dr. Neal, can you tell a bit more about the transition processes and support provided through HANDS within the community?
Tiffany Neal: HANDS is able to provide the support up to a year after they discharged so the problem is back to the community is then extended and this model by HANDS been able to provide that added support
So it’d be a tiered support depending upon what level of intensity of services they needed in the unit or what’s anticipated as they go back out to the community so everything from quarterly check-ins or working with the team to more intensive services where we’re delivering some of the intervention and training alongside the community team.
But there’s discharge planning that occurs about 30 days until they’re released, where we start engaging the team and we really engage the team pre-admission but then we’re able to connect and confirm that team or fill in gaps for the team. And then as the patient discharges or the student discharges. There’ll be a two-day community training where we’re able to provide context and make sure that any of the support then, and treatment plans that were implemented on the unit are transferred out or are set up for that transfer. And we’re able to meet with the team prior to and then as the patient is discharged the day that they’re back in the community, we are able to do some direct training and more hands-on coaching with the patient and the core team that’s been identified within the community.
Q: Are there similar models already available in the States? What inspired you to have such a multifaceted approach?
Naomi Swiezy: So there definitely there, there definitely is some precedent for doing similar kinds of models but not very many of them across the country. But some of us have worked in programs that have kind of that similar ability to be able to interface with the community until folks are able to get into the unit, and then, you know, work with them on the unit and post discharge for a period of time. So that is a model that some of us have worked in prior. So that was one thing that inspired.
But then also just the need of the community so what all of us as providers have seen time and time again is that institutionalization and sending people away somewhere is not a fix. You’re obviously in a very different environment, a very different context and behaviors and the way that the individual is responding within that context, may be very different than how they do in the community. So the most effective means is to really understand what’s going on in the community; and what the environment is like that’s supporting them out in the community, using that to help to inform some of the goals and some of the strategies are implemented on the unit with keeping in mind where they’re going back to. And then ultimately providing that support out in the community so that any changes that are made, or any of the recommendations are able to be implemented and sustained over a period of time. Because what we do see is that there is that, you know, kind of “open door”, or “swinging door,” that occurs a lot as folks are not being as successful as they could in the community so then they’re sent somewhere. They spend a period of time. And then folks are, you know, accepting them back, but really, not any further tooled and understanding, most effectively how to work with the individual once they’re back, and to again, maintain some of those games.
So it is a very unique format to be able to build on the skills that all of us have for Damar who’s, you know, run a wide range of intensive services prior and has, you know, just networks across Central Indiana, in terms of a whole range of different levels of services. Our Psychiatry Department inclusive of HANDS that works alongside of families and schools across the state. It’s just really been a very nice blend to begin to coordinate those emphases.
Q: I’d like to go back to the topic of referral and key reasons for admissions. So what would determine the decision to admit a person to the unit?
Tiffany Neal: Dr Swiezy was mentioning that it’s individuals that:
are 12 to 18 years of age that have challenging behavior,
diagnosis or eligibility of autism spectrum disorder or related disability,
and really have IQs or cognitive abilities within the full range so down to 40 and then more severe up through average range.
So it’s a pretty wide range of patients that are potentially being served. Most of them are having challenges, and, you know, either in resource access or again as Dr Swiezy was mentioning recidivism between facilities and no one taking that time to really stabilize and do an appropriate assessment and and have that more full community team approach, where they’ve seen a number of providers or they’ve been involved in a number of systems and settings. And as we know, autism is oftentimes excluded from a lot of the community services, the wraparound care and the CMHs and, you know, other service agencies are unable to service individuals with autism and so these individuals are left without a kind of service entity that can do that, that primary kind of stabilization and assessment and really looking at their treatment overall to transition back out to a team.
Naomi Swiezy: And I think what’s really unique too as well, you know that intervention is occurring on the unit. That is when folks are also being able to access a wide variety of resources through HANDS in Autism. And through affiliation with the neuro diagnostic Institute, so that folks can begin that learning process and not waiting until the individual is ready to come back. But they can access all kinds of modules and resources and really get to know us as we get to know them as well. And then it really helps to facilitate that relationship building and understanding and speaking the same language so that then when the individual comes back to the community we’ve built those relationships and we’re ready to get to work to help to maintain them out in the community.
Tiffany Neal: Building upon the team piece I think it was helpful. And what Dr. Swiezy was mentioning (as you asked) in regards to the team component because I think these kiddos or patients are also ones that have cycled through either a number of providers or a number of settings within the school system or a number of, you know, professionals within the community and even sometimes placements. If it’s not, you know, if they’re not so worth their primary caregivers. So again, I think that having that honest discussion and having the collective team involved through the partnership sets the stage for more of that dialogue and identifying the gaps to set their course a bit differently and then access to resources, build that foundation among whomever is identified as the core team to help foster kind of that transfer and discharge as they go back out in the community.
Videos From Autism Science Foundation Annual Day of Learning
The Day of Learning at the Autism Science Foundation (ASF), is a TED-style science conference that brings together leading autism researchers to present new findings to members of the autism community. Due to the coronavirus pandemic, this year’s Day of Learning was held virtually. Over 800 people from across the world took part in the event.
Below are links to recorded presentations paired with ways to learn more on topics on the INformation Network website.
Dr. Lord called for a new term: “profound autism.” Announced publicly for the first time at the Day of Learning, the term is intended to help individuals with the highest level of needs gain access to appropriate services and to increase research participation by this understudied subpopulation.
Dr. Matthew Lerner explained how he and his team are moving toward an “evidence-based menu” of interventions to develop social skills in adolescents with autism, which will allow families to take more targeted actions to improve outcomes.
Is ABA Passe? – Dr. Melanie Pellecchia – University of Pennsylvania
Dr. Pellecchia outlined some of the historic problems of applied behavioral analysis (ABA) and showed how increased knowledge of childhood development has significantly improved the practice in recent years, with a greater emphasis on fun, play-based therapy sessions and a de-emphasis on “teacher-led, didactic” sessions.
Dr. Hus Bal argued that while support for adults with autism often focuses on the transition to adulthood and associated milestones, there is not enough being done to provide adults with ongoing support throughout their lives.
What information is available on how to support seniors with ASD?
Currently, not much information is available on how to support seniors with ASD. However, we know that age and severity of autism are tightly linked, where the severity of autism tends to grow with age across such situations as social communication, coping with change or generating new ideas or solutions (Charlton, 2016). But here are some resources: