The NeuroDiagnostic Institute Adolescent Autism Services Unit – HANDS in Autism® Involvement towards Impact on Community Training, Transition, and Support

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.

Thank you for your time. For more information about the NDI, please visit HANDSinAutism.IUPUI.edu/ndi

Videos From Autism Science Foundation Annual Day of Learning

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.

Do We Need New Terms for Autism? – Dr. Catherine Lord – School of Medicine at UCLA

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.

Read More: What is ASD?

Autism Research in 2020: What Do We Know? What Do We Need? – Dr. James McPartland – Yale Child Study Center

Dr. McPartland explains that many of the advancements made this year amid the pandemic will benefit individuals on the autism spectrum long after the current crisis is over.

Read More: About the Diagnosis, What is Evidence-Based?

Developing Personalized Social Interventions for Adolescents with Autism – Dr. Matthew Lerner – Stony Brook University

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.

Read More: Transition

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.

Read More: Applied Behavior Analysis

Research on Adults with Autism in Natural Settings – Dr. Vanessa Hus Bal – Rutgers University

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.

Read More: Adulthood and Aging

Robots as Autism Therapy Partners – Dr. Brian Scasselatti – Yale University

Dr. Scassellati demonstrated the powerful effect that robots can have as autism therapy partners and explained what parents should look for in evaluating these solutions.

Read More: Technology

Cultural and Diversity Considerations

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On this page, you can explore the following topics (click on the topic of interest):

While there are no differences in ASD symptoms across different countries or ethnic groups, there are differences in the overall identification, particularly the cases of misdiagnosis or lack of diagnosis in minorities.

What is Cultural Competence?

Cultural competence focuses on understanding and appropriate response to the unique combination of cultural, linguistic and individual diversity that the professional and client/patient/family bring to interactions.

The terms culture and linguistics refer to patterns of human behavior, including language, thoughts, communications, actions, customs, beliefs, values, and institutions of racial, ethnic, religious, or other groups (e.g., gender identity/gender expression, age, national origin, sexual orientation, disability) (ASHA, 2017).

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Why is Cultural Competence Important?

Differences do not imply deficiencies or disorders. Culture and language may influence  behaviors and attitudes of individuals seeking care. In turn, delivery of services is influenced by the values and experiences of providers. Culturally competent care means providing service that is respectful of, and responsive to, an individual’s values, preferences, and language. Care should not vary in quality based on ethnicity, age, socioeconomic status, or other factors.

Federal and state regulations and programs, such as Medicaid, Medicare, and the Individuals with Disabilities Education Act (IDEA), require that providers render culturally and linguistically appropriate services. These programs are in accordance with broader legislation such as Title VI, Executive Order 13166, and National Standards on Culturally and Linguistically Appropriate Services (CLAS).

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Where to Start?

Massachusetts Act Early created a skills-based training curriculum, Considering Culture in Autism Screening, an interactive, case-based training about culturally competent screening, evaluation, and referral to intervention services for children with autism spectrum disorder (ASD)

Several organizations have also developed an implementation guides to help providers consider and implement policies that focus on cultural competence. Here are some of them:

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What is Cultural Responsiveness?

Cultural responsive teaching or instruction refers to a “pedagogy that empowers students intellectually, socially, emotionally, and politically by using cultural referents to impart knowledge, skills, and attitudes” (Ladson-Billings, 1994, p. 382).  To be culturally responsive, teachers make content and curricula accessible to students in a way that students can relate to and understand, including embedding aspects of students’ daily lives into the curriculum. These could be language, prior knowledge, and interests. (ASCD, 2011).

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Additional Resources

National and Nationwide Resources:

State Resources:

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Nominate for DISI

Do you want to recognize an outstanding organization that:

  • Engages the community and promote innovative ideas in the field of Autism Spectrum Disorder?
  • Embodies the IIACC’s mission, facilitate sharing of information on autism‐related activities?
  • Drives the implementation of services aligned with the goals in the Indiana Comprehensive State Plan?

Follow the link to the nomination form.

Download the nomination form in a Word format to review and prepare responses (if needed). Please make sure you transfer the responses into the online form.

College & Vocational Training

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As an individual prepares for his/her transition from school to adult life, putting a plan into place will assist in a seamless and successful transition.  While a child can receive educational services through age 21, a transition plan should be discussed by age 14.

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When Should Planning for Transition out of School into Adult Life Occur?

A transition IEP’s main focus is to develop a plan to help the student move from high school to adult life. Caregivers should be discussing transition with school and therapeutic supports around the age of 14 years (in Indiana) and the student should be included in IEP meetings by this point. Caregivers should begin seeking a lawyer to assist with guardianship (if needed) and trust/estate planning around this time. Guardianship should be filed on the child’s 18th birthday.

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What Considerations Should be Made when Choosing Post-secondary Education or Employment Options?

  • What does the individual want?
  • What are the individual’s cognitive abilities?
  • What are the individual’s physical abilities?
  • What will allow the individual to be most successful and/or independent?

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How Can I Help Prepare my Child with ASD for College or Other Post-secondary Education?

Whether in middle or high school, if an IDEA-eligible student is planning to attend college, there are a number of critical steps to be taken to become college-ready. Early in the transition process, a student is encouraged to:

  • Take interesting and challenging courses that prepare him or her for college;
  • Be involved in school or community-based activities that allow him or her to explore career interests, including work-based learning or internship opportunities;
  • Meet with school guidance counselors to discuss career goals, such as vocational and educational goals, programs of study, college requirements, including the admissions process and any standardized tests required for admission; and
  • Be an active participant during the IEP meetings.

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Additional Resources

References

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