UTISM PECTRUM EWS A YOUR TRUSTEDS SOURCE OF SCIENCE-BASED AUTISM EDUCATION,N SPRING 2021 INFORMATION, ADVOCACY, AND COMMUNITY RESOURCES VOL. 13 NO. 4 Housing and Community Living

Five Key Issues to Explore When Considering Housing Options

By Desiree Kameka Galloway, lic Policy, Autism Housing Network, and Autism Housing Network pioneering leaders from all sectors across and Denise D. Resnik, the U.S. and around the globe. First Place AZ Just as home options for seniors have evolved and expanded over the past 50 years, individuals with autism and other inding the right home for you or I/DD should also be able to describe and your loved one with autism or oth- access a variety of supportive housing er intellectual and developmental choices offering a broad spectrum of ser- Fdisabilities (I/DD) can be daunt- vices and amenities, diverse locational and ing. While today’s marketplace is finally lifestyle preferences and funding streams. beginning to offer more options, several The five key issues shared in this ar- important issues should be considered to ticle - and much more - can be explored find the optimum housing environment in greater detail in A Place in the World. once the momentous decision is made to Consider the following as you build your move out of the family home. Individuals vision of “home.” and their families can contemplate which of these and other options best fit their 1. Alignment with Life Goals and Lifestyle lifestyle interests, support needs, location preferences and finances. When it comes to housing options, in- A great place to start is A Place in the dividuals and families may consider how World: Fueling Housing and Community Residents of The Arc Jacksonville Village, one of various national their own lifestyle fits with a particular Options for Adults with Autism and Other properties listed in the Housing Market Guide, enjoying new friendships property or community. Whether it’s the Neurodiversities. The 2020 report includes ideal studio apartment or sharing a home more than 150 terms and several examples es a broad and more robust marketplace Co-authors include Arizona State Uni- with friends, a group home or a planned designed to guide individuals and their where individuals can better express their versity Watts College of Public Service community setting, the type of property is families and developers alike. The first housing needs and preferences in terms and Community Solutions and its Morrison the first step in determining where to live. resource of its kind focused on support- understood by those prepared to deliver Institute for Public Policy, the First Place For some, the energy and connectivity of ive housing options, it aims to provide a from the private, nonprofit, philanthropic Global Leadership Institute and its Daniel consumer-friendly resource that advanc- and public sectors. Jordan Fiddle Foundation Center for Pub- see Options on page 22

Leaders of the Autism and Behavioral Health Communities To Be Honored at May 12th Virtual Leadership Awards Reception

¶¶¶ You Are Cordially Invited! ~ See Page 20 for Details ¶¶¶

Marco Damiani Tony Hannigan Hillary Kunins Allison Sesso Ian Shaffer, MD, MMM, CPE Chief Executive Officer President and CEO Exec. Deputy Commissioner of Mental Hygiene Executive Director VP and Executive Medical Director AHRC New York City Center for Urban Community Services NYC Department of Health and Mental Hygiene RIP Medical Debt Healthfirst - Behavioral Health (Retd.)

Excellence in Autism Award Lifetime Achievement Award Healthcare Hero Award Behavioral Health Advocacy Award Corporate Leadership Award

PERMIT NO. 137 NO. PERMIT

Effort, PA 18330 PA Effort, MONROE, CT MONROE,

U.S. POSTAGE PAID POSTAGE U.S. 460 Cascade Drive Cascade 460

Mental Health News Education, Inc. Education, News Health Mental ORGANIZATION NON PROFIT NON PAGE 2 www.AutismSpectrumNews.org AUTISM SPECTRUM NEWS ~ SPRING 2021

Table of Contents Editorial Calendar

Housing and Community Living Summer 2021 Issue 1 Five Key Issues to Explore When Considering Housing Options “Autism and Employment” 4 A Scaffolded Approach to Supporting Individuals with Autism Deadline: June 3, 2021 6 How Executive Function Skills Aid in Daily Living 8 Community Living and Inclusion for Individuals with I/DD Fall 2021 Issue 10 How Preparing Early Improves Independent Living in Adulthood “Challenging Behaviors and Autism” 11 Improving Interactions Between Police and People with Autism Deadline: September 2, 2021 12 Increase Neuro-Inclusive Housing in Your Community: Here’s How! Winter 2022 Issue 13 Teaching Community Skills to Prepare for Independent Living “Improving Lives with Technology” 14 Organizational and Individual Change: The Road to Inclusion Deadline: December 3, 2021 15 Finding Home: Creating a Home that Supports the Individual 18 Perspectives From Two Adults Living Independently at Chapel Haven Spring 2022 Issue 19 Community Living Skills Opportunities for Independent Living “Education and Autism” 24 Parents are Vital to Positive Post-Secondary Outcomes Deadline: March 3, 2022 26 Tenants Celebrate Two Years of Independent Living in New Housing 27 Accessory Dwelling Units Offer More Housing Options 27 A COVID-19-Inspired Housing Solution for Our Autistic Daughter For more information, visit 29 Community Living in the Era of COVID-19 www.AutismSpectrumNews.org/submit 31 Suitable Housing and Community Living: Challenges for Autistics or email [email protected] Supporting the Autism Community 16 AHRC NYC Artists Dive Deeper Into Art and Self-Expression 17 How Robots Can Be Used in Special Education Stay Connected with ASN Online 23 Your Child’s Right to an Appropriate Transition Plan 25 Compassionate Care is a Missing Piece in Behavior Analytic Training Over 1,000 articles and 50 back issues at 28 My Child with Autism Needs Anesthesia - What Should I Know? 29 A Parent Advocate’s Hard-Fought Journey www.AutismSpectrumNews.org 31 AHRC New York City’s Educational Advocacy Guides Parents 33 Smart Home Technology and Autism Autism Spectrum NewsDesk 3 MHNE Welcomes David Minot as New Executive Director #YourTrustedSource 2020 MHNE Leadership Awards Reception 3 Leaders To Be Honored at May 12th Virtual Leadership Awards Since 2008, Autism Spectrum News has been providing 20 Event Registration Form a trusted source of science-based autism information, 21 Slate of Honorees and Event Details education, and quality resources in the community.

Please Support the Resources Advertised in This Issue!

AHRC New York City Daniel Jordan Fiddle Foundation Moving Forward Behavior Therapy Associates Devereux Advanced Behavioral Health MSR Legal Consulting Services Berklee Institute for Arts Education & Special Needs First Children Services / Exceptional Learning New Frontiers Executive Function Coaching Center for Career Freedom First Place AZ / Autism Housing Network Potential, Inc. Chapel Haven Schleifer Center Melmark Threshold Program at Lesley University College Internship Program (CIP) MOVIA Robotics Westchester Jewish Community Services (WJCS) AUTISM SPECTRUM NEWS ~ SPRING 2021 www.AutismSpectrumNews.org PAGE 3 AUTISM SPECTRUM NEWS DESK

Mental Health News Education, Publisher of Autism Spectrum News, Welcomes David Minot as New Executive Director

By Staff Writer much more accessible with thousands of Autism Spectrum News articles now available to read, search and share on social media. We are now also able to publish additional website-only he Board of Directors of Mental content that can address timely issues such Health News Education (MHNE), as COVID-19 and better serve the needs of the nonprofit organization that our readership. I am excited to lead the or- Tpublishes Behavioral Health News ganization into our next phase as a growing and Autism Spectrum News, announces media presence providing vital information important changes in Executive leadership and education to the autism and behavioral and launches a planning initiative with an health communities.” eye toward future development. Debra Pantin, MSW, MS-HCM, MHNE In a move designed to reflect the increase Board Chair and President and CEO of in technology and strengths of the leader- Outreach, remarked, “We applaud Ira for ship at MHNE, the father and son team of the effort it took to create an organization Ira H. Minot, LMSW, and David H. Minot, and run it almost singlehandedly for over BA, will assume new titles effective im- 20 years and at the same time recognize mediately with Ira becoming Founder and David as the new face of the organization David becoming Executive Director. to support his new roles in technology and Since the creation of MHNE in 1999, Ira networking.” Minot, a survivor of mental illness, was the face and sole leadership of the organi- About MHNE zation. In 2008 Ira’s son David Minot came on board to help launch Autism Spectrum Mental Health News Education News and develop the organization’s web- (MHNE), publisher of Autism Spectrum site in its earliest form. News and Behavioral Health News, is a Times have changed and so has the tech- Ira H. Minot, LMSW, Founder and 501(c)(3) non-profit organization that pro- nology driving MHNE and the website of David H. Minot, BA, Executive Director vides a trusted source of education, infor- Behavioral Health News and Autism Spec- mation and community resources on mental trum News. At the January 27th meeting, come the face of the organization and tak- “What most people don’t know is that illness, substance use disorders, and autism the MHNE Board of Directors conferred on en on new responsibilities including the my father and I make up the entire staff spectrum disorders to consumers, families, Ira the permanent title of Founder and re- redesign of both of our websites, develop- of MHNE. Running this organization is a and the professional community. As one of solved to redefine Ira’s role so that he would ing our social media strategy, and recent- labor of love, and we couldn’t do it with- the nation’s leading evidence-based publi- continue as the publisher of Behavioral ly launching webinars, which provide our out our wonderful Board of Directors,” ac- cations for the behavioral health and autism Health News and continue to contribute readership direct access to leaders in the knowledged David Minot. “Over the past communities, both publications provide an his exceptional vision to the organization. autism and behavioral health communi- few years, it became clear that we needed affordable and cost-effective opportunity Simultaneously, the Board elevated David ties,” Ira stated. “I am not retiring any time to modernize our content delivery strategy. to reach a large, targeted audience now es- Minot to the position of Executive Director. soon and will still be publishing Behavior- Our websites have been completely rede- timated at over 200,000 readers. For more “For the past year I have suggested this al Health News while David continues to signed from scratch, and now visitors are information, visit AutismSpectrumNews. change in our titles because David has be- publish Autism Spectrum News.” greeted by a media-rich experience that is org and BehavioralHealthNews.org.

Leaders of the Autism and Behavioral Health Communities To Be Honored at May 12th Virtual Leadership Awards Reception

By Staff Writer For more information and to register, visit David Minot, Executive Director of Proceeds from this event will go towards Autism Spectrum News BehavioralHealthNews.org/Awards. MHNE, added, “We are so pleased to have expanding and developing the nonprofit Debbie Pantin, MSW, MSHCM, Pres- this opportunity to recognize these cham- educational mission of Autism Spectrum ident and CEO of Outreach and MHNE pions who have dedicated their careers to News and Behavioral Health News. With ental Health News Education, Board Chair, made the announcement stat- making a different in people’s lives.” these publications, Mental Health News Inc. (MHNE), the nonprofit ing, “MHNE has selected five prominent Ira Minot, Founder of MHNE, remarked, Education (MHNE) aims to reduce stig- organization that publishes leaders from well-known New York orga- “Due to COVID-19, this will be our first ma, promote awareness and disseminate MAutism Spectrum News and nizations who represent some of the very Virtual Leadership Awards Reception. evidence-based information that serves to Behavioral Health News, will be honoring best in the fields of autism and behavioral This year’s event will be an evening to improve the lives of individuals with men- five outstanding champions of the autism health. We are honored to pay tribute to remember as we pay tribute to our distin- tal illness, substance use disorders and and behavioral health communities at its them in recognition of their many years of guished honorees. We cordially invite all autism spectrum disorders, their families, Virtual Leadership Awards Reception on dedicated service to the autism and behav- colleagues, friends and family members to and the provider community that serves May 12, 2021 from 5:00 pm to 6:00 pm. ioral health communities.” join in the celebration.” them.

Visit www.BehavioralHealthNews.org/Awards For Event Details, Honoree Details, Event Sponsors, and Registration Details PAGE 4 www.AutismSpectrumNews.org AUTISM SPECTRUM NEWS ~ SPRING 2021

A Scaffolded Approach to Supporting Individuals with Autism in the Community

By Ernst VanBergeijk, PhD, MSW neighborhoods safely. Lesley University of- and Krista Di Gregorio fers an inclusive experience where Thresh- The Threshold Program old students have access to undergraduate at Lesley University courses and can choose to participate in all university activities and athletics. Threshold graduates have two post-grad- he outcomes for young adults uate options: the Bridge and Transition with ASDs are well-known and programs. A small number of students each well-documented. Without inter- year choose the Bridge program. In Bridge, Tvention young adults with ASD students continue to live in the dorms and fail to reach basic young adult milestones further explore their internship opportuni- in terms of independent living, employ- ties during a school calendar year. Bridge ment, and social and romantic relation- Year strengthens work, independent living, ships. “Research suggests 70% of indi- and social skills in a structured setting. viduals with ASD will be unable to live Most students opt for a Transition year, independently, that the cost of supporting taking a next step and move into local each person may exceed 2 million dollars apartments. Threshold staff assist students over their lifetime, and that the cost of to find paid employment and they also autism services in the U.S. exceeds $236 remain supported by Independent Living billion dollars annually” (Buescher, et al., Advisors. Transition students live inde- as cited in Bruyere et al., P.14216). The un- pendently, and Threshold staff meet with employment rate among this population is them regularly to provide guidance with staggering. It was estimated that approxi- cooking, budgeting, apartment upkeep, mately 85% of individuals with ASD are Threshold students, staff and alumni enjoying a Red Sox game at employment strategies, social interactions unemployed (Shattuck, 2012). Roux et al., and accessing local resources. (2013) found that only 53.4% of young Fenway Park. They are able to choose among several At the completion of the Threshold adults with autism ever worked outside special events offered at Threshold each week. Program, all alumni are entitled to a myr- the home for pay since leaving high school iad of free services and support from our and this was the lowest rate among disabil- Services. However, they found only 48% ly with scaffolded levels of support. Col- Alumni Center. Alumni frequently access ity groups. Further, the team found that of ASD youth received such services. Fur- lege-based transition programs seek to employment-related support, such as writ- young adults with an ASD earned an aver- thermore, post-secondary college services teach those skills to students with ASDs ing résumés or searching for jobs. We also age of $8.10 per hour, significantly lower were the best predictor of better earning as well as other kinds of disabilities. The organize workshops and courses. If alumni than the average wages for young adults which is critical for independent living. curriculum of these transition programs just want to find something fun to do, we in comparison groups; and held jobs that Yet, only 10% of individuals with ASDs varies. Parents along with their young offer consistent social activities with other clustered within fewer occupational types. in the data set received college-based ser- adults must explore these programs togeth- alumni. Many of our alumni choose to live Data from the National Transition Lon- vices. Carter, Austin, & Trainor (2011) er to ensure that the program will meet the in the local area to access the Alumni Cen- gitudinal Study-2 (NTLS-2) indicate that found six predictors significantly increased student’s needs and help him or her reach ter but during the recent pandemic we have the proportion of young adults with ASDs the odds of employment after high school his or her ultimate goals. A key factor is expanded our virtual services and opportu- employed was comparable to young adults for individuals with severe disabilities: (1) whether the transition program is more ac- nities to many out-of-state alumni as well. with deaf-blindness or multiple disabili- Paid community-based employment while ademically oriented and leads to a college Our scaffolded approach to independent ties. In fact, individuals with ASDs earned in high school; (2) Being male; (3) More degree, or whether the program focuses living has produced exceptional outcomes. only 86% of what other young people independent in self-care; (4) Higher social upon life skills including employment and In our most recent independent alumni sur- with other disabilities earned. Not only skills; (5) More household responsibilities independent living skills. The acquisition vey, Threshold graduates reported an 85% are these young people more likely to be during adolescence; and (6) Higher paren- of a college degree in and of itself does employment rate. This is drastically higher unemployed, but they are also more likely tal expectations for future work. not guarantee that a student with an ASD than the national average. Seventy-seven to be underemployed. Half the young peo- will be gainfully employed and be capable percent of our graduates are living inde- ple with ASDs worked less than 20 hours Do post-secondary programs work? of living independently in the community. pendently and 38% pay their own rent or a week. That rate is 4 times lower than all Transition programs explicitly teach em- mortgage themselves without addition- other disabilities. On average they worked The research on the efficacy of these pro- ployment skills through classes as well as al family support. Happily, many of our 23.3 hours per week versus 35.8 hours per grams is preliminary and limited. Wehman internship opportunities that are support- alumni continue to enjoy Threshold social week for all other disabilities. This is 36% et al., (2013) conducted the first research ed with seminars which help the students opportunities and 50% report being in a of the hours that young people with other study where post-secondary vocational decipher the social rules of the workplace. long-term relationship or marriage. disabilities work. The proportion of young training was randomly assigned to students Likewise, independent living skills are adults with ASD working full-time is about with ASDs. The control group were stu- first taught in the classroom and then are Ernst VanBergeijk, PhD, MSW, is a pro- 1/3 of all other disabilities (26% vs.71%) dents who received services through the applied to real life settings. Social skills are fessor at Lesley University in Cambridge, (Standifer, 2012). school district and Vocational Rehabilita- also taught in the classroom in transition MA and is the Director of the Threshold tive Services Offices. The results showed programs and are further reinforced in the Program which is a post-secondary tran- What do we know about encouraging that 87.5% of the students in the post-sec- residence halls through social program- sition program for students with a variety employment and thereby fostering ondary vocational training group were em- ming and in the moment interventions by of disabilities. www.lesley.edu/threshold. independence among ASD young adults? ployed 6 months after training compared to residence life staff. He also oversees the Lesley University only 6.25% of the control group who found Threshold Alumni Center which provides Pillay and Brown (2017) identified 4 employment. Moore & Schelling (2015) The Threshold Model of promoting life-long support for graduates of the predictors of employment for individuals looked at a group that was not exclusive- employment and independent living: Threshold Program. Beginning Summer on the autism spectrum. Those predictors ly on the autism spectrum, it did include A scaffolded approach 2022 the Threshold Program will be of- were: (1) A supported workplace, i.e., a some individuals with ASD and an Intel- fering a 6-week summer program focusing workplace that provides supports such as lectual Disability (ID). Their study found The Threshold Program’s two-year upon the acquisition of pre-employment, job coaching in order for the individual to 9 out of 10 students (with ID who gradu- core program focuses on developing so- independent living and social skills. succeed; (2) ASD traits and behaviors (the ated from a post-secondary program) were cial skills, living independently and career Krista Di Gregorio is the Director of more significant the autistic traits or exter- employed within 2 years of the study. This training. During the two-year residential Alumni and Employment Services at Les- nalizing behaviors, the less likely the indi- was compared to the respondents to the program, students participate in pragmatic ley University Threshold Program. The vidual is to be employed); (3) Functional NTLS-2 study where only ½ of the high classes including personal finance, comput- Alumni Center she oversees offers life-long independence; and (4) Family advocacy. school graduates with ID were employed. er applications and food lab and participate support to all graduates of the Threshold Miligore et al. (2012) found the odds Independent living and employment in multiple internships tailored to their in- Program. She and her staff also coordinate were greater for employment if the individ- skills are complex interconnected skills dividual interests and goals. Students live services for all post-graduate Bridge and ual received job placement services from that are comprised of more simple build- in student dorms and learn to navigate on state offices of Vocational Rehabilitative ing blocks that can be learned sequential- public transportation and explore their local see Scaffolded on page 35 AUTISM SPECTRUM NEWS ~ SPRING 2021 www.AutismSpectrumNews.org PAGE 5 PAGE 6 www.AutismSpectrumNews.org AUTISM SPECTRUM NEWS ~ SPRING 2021

The Care and Keeping of Home: How Executive Function Skills Aid in Daily Living

By Alissa Cappelleri, MAT ing for a pot to boil on the stove. Having a Program Coordinator menu of options of small activities that can New Frontiers Executive Function Coaching be executed within the waiting required of others allows for an individual to be most judicious with the day. avigating independent living requires balancing responsibil- Metacognition ities and monitoring oneself. NAll individuals must strike “What is working?” is a question that that balance that makes the most sense for should be asked frequently when extrap- them and their lifestyle regardless of neu- olating the efficiency of one’s system of rodiversity. To execute daily living tasks, keeping track of daily living responsibili- one must self-start and sustain motiva- ties. In order to best foster independence, tion throughout despite various distrac- it is essential to provide opportunities to tions and competing priorities. Across the engage in thinking that determines wheth- board, this is a difficult ask. There is an in- er or not given methods best serve a sit- herent lack of external structure to use as a uation. Though specific steps are parceled unit of measure and there are limited nat- out for each task and can be represented in ural occurrences that lead to true positive whichever manner is most suitable for an reinforcement. The question of “why?” is individual, opportunities to engage in dis- brought to the table while an individual course about process allow for increased defines what purposeful action looks like independence and proactive problem-solv- for themselves. Those on the autism spec- ing skills. Taking moments to establish trum may encounter some challenges es- of one’s day is planned around. All that re- like assisting in the crafting of such time- the efficacy of systems can ground one in tablishing a system to conduct a self-suf- mains flexible are subject to adjustment. tables or providing prompts in the form of the “Why?” behind a procedure and opens ficient life. Meaning making can serve to Being mindful in this is crucial as it can questions to help transition. Knowing there the conversation to determining if present be an arduous process as there is much that be very easy for these tasks to fall by the may be some adaptations is necessary as means of being are ideal and where they is open ended and left to be constructed in- wayside. there will be times where tasks may take may be entry points for intervention. It can dependently. That being said, figuring out Creating structure allows for all to be longer than expected. The creation of buf- be that expectations are being met, but the how to organize time and prioritize house- accounted for and given a designated time fers between activities can help with the ways to go about it may be a bit round- hold tasks can be difficult when they do not to attend to those things that can easily be discomfort of moving on and abandoning about. Exercises in evaluating present pro- have the same “fixed” deadlines of school ignored or have their avoidance justified. a task that may not have been completed ductivity and other options help to keep or work. Supporting individuals on the au- While it is important to focus on what is entirely. It is good to be prepared for when one constantly aware that there has been a tism spectrum in further developing exec- essential, developing blinders to tasks that there are moments where the washing ma- commitment to an activity but it is subject utive function skills enables goal-directed are not bound by external accountabil- chine is not done running so it is not yet to change. The idea here is to build rou- behavior and promotes accountability. ity is not advised. There is no true dire possible to move on to putting the clothes tines but to also pay attention to the need Executive functions allow for the execu- consequence of letting dishes pile up in in the dryer. Sometimes the timing is off, that there may need to be alterations made tion of day-to-day tasks while keeping an the sink or forgoing laundry for the third and flexibility is needed. to those routines over time. While the pro- eye on what lies ahead. They encompass week in a row, but day to day functioning cess for cleaning the bathroom may remain all the cognitive processes that allow one to is impacted, thus they are tasks that must Cognitive Flexibility largely untouched, there can be small vari- move from point A to point B with various be prioritized. For those that struggle with ances depending on availability of resourc- amounts of focused effort. Executive func- expectations that are not governed by rig- Unexpected obstacles arise despite es and time permitting. Rather than aban- tions guide behavior and direct course for id rules, enacting a system to follow can how ironclad a plan appears. A dish gets doning a task because it seems as though it problem-solving (Dawson & Guare, 2016). be helpful. A set plan that makes the space dropped or the timer on the oven shows 5 cannot be completed, being aware of one’s When considering the management of one’s for the maintenance of one’s living space more minutes, but it is necessary to leave thought processes explores which aspects living space, there are various multi-step builds routine and situates one in a produc- for an appointment at this given moment. are possible. tasks that are being completed in a some- tive habit. Navigating these situations can be difficult times simultaneous fashion. Laundry can due to the nature that they were unplanned Response Inhibition be done while dinner cooks in the oven and Time Management and require time that was not accounted for. one engages in another responsibility. This While it is not necessary to insert time in There are tasks that one has to do and juggling between activities requires a lot of Once tasks have been prioritized and a the schedule for suddenly emergent tasks, then there are those that an individual may starting, stopping and picking up where the plan to carry them out have been made, it one must be able to adjust as new priori- want to do. An ideal schedule accounts previous was left off. In any capacity, there is essential to evaluate the time that will ties present themselves. In these instances, for both. However, it can be hard to find is a certain amount of potential chaos that be dedicated and the pacing one needs to it can be helpful to model “taking stock” motivation to complete these “have to’s” brews below the surface. move through a schedule. Visual and audi- to see what aspects of a set schedule can when the “want to’s” are so tempting. The When providing attention to the follow- tory prompts are helpful here to aid in the no longer be adhered to and where flexible executive function skill of response inhibi- ing executive function skills, an individual transitions from one activity to the next. items on the agenda can be redistributed tion is one that plays a key role in manag- can be better suited to manage day to day Making a list of each responsibility that to a later time in order to address the new- ing adult responsibilities and meeting the responsibilities. includes the time needed to execute a giv- found item. Attention to self-monitoring expectations of daily living. The self-im- en task and that is easily accessible serves skills and cognitive modeling is helpful posed guidelines needed to care for one’s Prioritization and Planning as a tool of reference. Conceptualizing the here as acknowledging the discomfort or living space can be difficult to follow in- passage of time can be difficult so alarms inconvenience can validate the frustration dependently. Seeking out external systems It is easy to push off tasks that are not may be increasingly valuable. It is not un- that comes along with making room for of accountability can be beneficial so that tied to external responsibilities. Through usual for ten minutes to feel like seconds the unknown. Noting that priorities have pace can be kept and commitments remain focusing attention on the structure of time, or even hours depending on the nature or changed and walking through the reasons in place. Setting up times to communicate seemingly “backburner” items are given interest level of a task. Those who strug- why begins to reconcile the situation and with an individual at the start of tasks can a place so that living spaces remain opti- gle with grounding themselves in time can switch between tasks. serve as a prompt that it is now the moment mal. When looking at one’s roles and re- benefit from external markers to help guide Moving from one activity to the next is to be engaged in a focused activity. Tying sponsibilities in a variety of contexts, all through the day. This allows for urgent essential when executing daily living re- seemingly small tasks to larger picture can be sorted into the categories of “fixed” tasks to be situated within the necessary sponsibilities. Not every activity requires concepts can help to establish exigence and and “flexible.” Those components that are confines while still making space for the rapt attention at all times and there is a motivation as well. For example, wiping fixed are firmly situated within a time con- essential but maybe not immediate house- waiting game that is played. Being able to down the counter as an end of day ritual is straint or external involvement that create hold needs. Here is where it is possible to move from chore to chore in incremental one that can be easily abandoned but may an impetus for completion. Deadlines or make good use of structure in order en- ways makes the most of time. That being serve the purpose of preventing the hours of operation forced these tasks into sure all bases remain covered. Supporting said, though it may be time to make dinner, a set space on the schedule where the rest someone on the autism spectrum may look there are tasks that can be done while wait- see Executive Function on page 38 AUTISM SPECTRUM NEWS ~ SPRING 2021 www.AutismSpectrumNews.org PAGE 7 PAGE 8 www.AutismSpectrumNews.org AUTISM SPECTRUM NEWS ~ SPRING 2021

Community Living and Inclusion for Individuals with Intellectual and Developmental Disabilities

By Karen Parenti, MS, PsyD, those with intellectual and developmental Krystina Cassidy, MSEd, disabilities. This involvement also enriches Kimberly Duhanyan, MEd, BCBA, the community as a whole. and Mary Jane Weiss, PhD, BCBA-D All human beings should have the op- Melmark portunity to pursue relationships, employ- ment, and preferred leisure activities. Indi- viduals with disabilities are no exception t was not long ago that individuals to this, and when provided with individu- with intellectual and developmental alized support(s), they can be successful. disabilities were cared for in settings When a person’s dignity is promoted and Iquite separate and isolated and were care is shown for their well-being, their deprived of full integration into their com- chance for happiness is increased as is munities. Thankfully, in recent decades, their independence with future undertak- the entitlement to community living and ings. The level of fulfillment and happi- learning opportunities has become clear, ness that can be obtained within the com- and the integration of individuals with in- munity setting for those individuals can be tellectual and developmental disabilities paramount to their success in all areas of into their communities has steadily im- their life. proved. Still, much work remains in under- standing what components of community Karen Parenti, MS, Psy.D, is Senior Di- involvement matter, in identifying how rector of Program Quality Assurance and to enhance these opportunities, in under- individual’s capacity for contacting fulfill- is always a concern. Indeed, as more com- Family Services for Melmark PA. Krys- standing how to increase community ac- ment and joy in everyday pursuits (Ayres munity-based instruction can occur in situ, tina Cassidy, MSEd is Director of Mel- ceptance, and in ensuring that individuals et al, 2016; Biggs & Carter, 2017; Parsons much less generalization training needs to mark PA’s Children’s Residential Homes. with disabilities experience the full range et al, 2012). Experiential components that be conducted. Instruction can be more effi- Kimberly Duhanyan, MEd, BCBA, LABA, of community immersion experiences. impact quality of life include: housing, cient, effective, and overall enriching. is Senior Director of Residential Services Individuals with disabilities deserve to employment, leisure interests, and social Community-based instruction also al- for Melmark NE. Mary Jane Weiss, PhD, become an integral part “of” their commu- connections (Schalock, Bonham & March- lows for the provision of more specific BCBA-D, is Senior Director of Research nities, and not just go on outings “in” their and, 2000). Fortunately, there is some supports embedded into the community, at Melmark. For more information, please communities. A goal for community living agreement on which elements of quality to create the scaffolded support needed visit www.melmark.org. and full integration should be to achieve of life are most important (e.g., Bramston, to help the individual succeed. This is a meaningful joining with the community, Pretty, & Chipuer, 2002; Plimley, 2007). significant advantage over the provision References and to ensure that the integration is mul- These include: of external supports, and allows for nat- tidimensional and includes a wide range urally available supports to be provided. Ayres, M., Parr, J. R., Rodgers, J., Ma- of activities that enhance quality of life. 1. Emotional well-being, often considered Recent explorations of contexts, in which son, D., Avery, L., & Flynn, D. (2017). Ideally, individuals should be engaged in synonymous with happiness individuals with autism succeed as em- A systematic review of quality of life of the community not just for errands and es- ployees, point to several factors including adults on the autism spectrum. Autism, sential tasks, but for leisure activities, vol- 2. Social well-being, associated with con- an increased level of the community’s un- 1362361317714988. unteer events, employment, and social ac- nection, engagement, and relationships derstanding of autism and the provision of tivities. For example, individuals should be supports within the environment (Dreaver Bramston, P., Pretty, G., & Chipuer, H. encouraged to the extent possible to partic- 3. Physical well-being, associated with et al, 2020). These supports might be tangi- (2002). Unravelling subjective quality of ipate regularly in various activities offered general health, level of physical activity, ble (e.g., visual supports), social (e.g., fre- life: An investigation of individual and by the local YMCA, church, or community and overall wellness quent informal check ins), or formal (e.g., community determinants. Social Indica- center. Additionally, individuals should be presence of a coach). These same themes tors Research, 59(3), 261-274. encouraged to participate in neighborhood 4. Self-determination, as evidenced by the of increasing community members’ under- activities and events, and when possible, degree of control and choice standing of autism and individuals with Biggs, E. E., & Carter, E. W. (2016). Qual- get to know and have regular engagement intellectual disabilities and providing mul- ity of life for transition-age youth with with their neighbors. Activities for engage- 5. Social inclusion, as indicated by com- tiple environmental supports can enhance autism or intellectual disability. Journal ment can be geared towards individuals’ munity immersion and engagement success in any community integration con- of autism and developmental disorders, various likes and preferences, which may text, and can increase the overall success of 46(1), 190-204. differ amongst individuals. 6. Personal development, focused on skill immersion in community activities. Individuals should also have outreach development and the attainment of inde- Dreaver et al (2020) discuss the impor- Dreaver et al 2020. Success factors en- and maintain connections with their local pendence tance of “match” between the individual abling employment for adults on the autism community liaisons, police officers and and place and/or type of employment, and spectrum from the employer’s perspective. community figures. This, in turn, will help 7. Personal rights, including the preserva- this concept can be extended to all aspects Journal of Autism and Developmental Dis- individuals with disabilities build mean- tion of dignity of community integration. Indeed, individ- orders, 50, 1657-1667. ingful and sustainable relationships with ualizing tasks, activities, and environments people who are not paid to care for them. It is interesting to look at this list in the that are best aligned with an individual’s Parsons, M. B., Reid, D. H., Bentley, E., Finally, to the extent possible, individuals context of community engagement and preferences leads to more success, whether Inman, A., & Lattimore, L. P. (2012). Iden- with disabilities should be given ongoing inclusion. High levels of community en- it is a leisure or an employment context. tifying indices of happiness and unhappi- choices of what community activities they gagement lead directly to these indices Successful employment experiences also ness among adults with autism: potential want to be a part of including their level of of quality of life, allowing for social in- benefit the individual with disabilities in targets for behavioral assessment and in- involvement. This gives them more control clusion, enhancing social well-being, and obvious ways, building their skills and tervention. Behavior analysis in practice, over their life and also increases their over- increasing happiness. Being a true part of confidence, and increasing their quality 5(1), 15-25. all independence and satisfaction. one’s community also provides for many of life. It also benefits the employer, and more opportunities for choice, control, in- the other individuals who work at that site, Plimley, L. A. (2007). A review of quality Community Integration dependence, and self-determination. widely impacting the broader community of life issues and people with autism spec- and Quality of Life In addition, meaningful, sustained com- and creating a diverse and inclusive envi- trum disorders. British Journal of Learning munity engagement provides for much ronment for all. Disabilities, 35(4), 205-213. Community inclusion and engagement more embedded instruction, as individu- are closely related to the concept of quali- als can learn tasks and navigate environ- Summary Schalock, R. L., Bonham, G. S., & March- ty of life, which has also been increasingly ments naturally, in real contexts. This is a and, C. B. (2000). Consumer based quality discussed as an essential outcome for in- strong advantage over historic reliance on The involvement in all aspects of com- of life assessment: A path model of per- dividuals with disabilities. Quality of life teaching skills in analog settings, where munity living serves as a critical quality ceived satisfaction. Evaluation and pro- is difficult to define, but is related to the generalization to the natural environment of life indicator in a variety of ways for gram Planning, 23(1), 77-87. AUTISM SPECTRUM NEWS ~ SPRING 2021 www.AutismSpectrumNews.org PAGE 9 PAGE 10 www.AutismSpectrumNews.org AUTISM SPECTRUM NEWS ~ SPRING 2021

How Preparing Early Improves Independent Living in Adulthood

By Samantha Smith, MS Ed, BCBA, LBS-PA, no easy feat to master. If a team waits until Rebecca Miller, MS, RBT, and late adolescence, potentially 16 or 17 years Julia Robertson, MS Ed, QASP-S, RBT of age, to begin teaching interventions on Exceptional Learning, LLC these daily living skills, there may not be adequate time for a young adult to success- fully master these skills to then transition t is never too early to prepare for any to independent living arrangements. Addi- skill, but especially skills needed tionally, at the age of 21, the availability of to live independently. Many young support dramatically declines. Expecting a Iadults feel that moving out on their young adult to learn the necessary skills in own is a rite of passage, whether that be at- just a few years is unrealistic and potential- tending college to live in a dormitory, rent- ly harmful to their future success. ing their own apartment, buying their first The intricacies associated with true mas- home, among many other independent tery of adaptive living skills, social skills, living situations. Individuals with Autism and community skills requires an individ- Spectrum Disorder (ASD) are far less like- ual to begin practicing the basics at an ear- ly to participate in this rite of passage and ly age. For example, someone learning to sense of accomplishment as reported by create a budget must first understand mon- Anderson, Shattuck, Cooper, Roux, and etary values, how to use cash or cards at Wagner (2014). The cases of Autism Spec- the store, how much common items cost trum Disorder are rising at an alarming and even using a banking app on their cell rate. The Center for Disease Control and phone or an ATM. Thankfully, ABA pro- Prevention (CDC) reports 1 in 54 cases in grams use assessments such as the Assess- America as of 2016, rising from 1 in 150 in ment of Functional Living Skills (AFLS) 2000. The ability for our country to adapt they will be for their adult life. should have to live in the community: find- and Essential for Living (EFL) to inform and guide these individuals to be produc- In their study on post-high school living ing and keeping employment, managing treatment teams of these crucial aspects tive members of society and live a quality situations among adults with disabilities, time and money, purchasing and preparing of adult life: toileting, health & safety, life is a tremendous task. With diagnostic Anderson et al. (2014) found that strong food, keeping a healthy hygiene routine, housekeeping, social awareness, money, evaluations starting in infancy, the abili- functional living skills and conversational and completing regular chores to maintain living with others, requesting, acceptance, ty for qualified professionals, working abilities correlated with independent living a home, to name just a few. Not to mention and following directions (Partington, J.W., alongside families, to assist in learning situations for individuals with ASD. This the need for developed conversational and 2012; McGreevy, Fry, & Cornwall, 2014). functional living skills is paramount. The resonates with what the autism and behav- social skills for healthy friendships, room- Appropriate programming based on com- earlier we can begin strengthening their ior analytic communities know to be true mates, professional relationships, and even munity participation and home living communication, social, and adaptive liv- about adult living. Think about the exper- romantic connections. For a person with ing skills repertoires, the better prepared tise most self-sufficient, independent adults autism, this repertoire of behaviors may be see Preparing on page 32

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For further information please contact Dr. Jeff Selman, VP Clinical Services of First Children Services at [email protected] or visit www.firstchildrenservices.com AUTISM SPECTRUM NEWS ~ SPRING 2021 www.AutismSpectrumNews.org PAGE 11

Improving Interactions Between Police and People with Autism

By Kristine Quinby, MEd, BCBA, LBS ioral health conditions in the county where Founder, President and CEO I live and operate Potential, the commis- Potential, Inc. sioners charged the county’s Department of Behavioral Health with “leading an ef- fort to develop a more effective response to man stands among an aisle at individuals in crisis whose behaviors bring a store. He doesn’t talk with them in contact with police officers.” Two anyone or interfere with their years later, a task force was created with A shopping, but he’s making the the aim of implementing a Crisis Interven- store’s employees uncomfortable, none- tion Team (CIT) model among the county’s theless. He picks up a product from the municipal police departments. shelf, examines it closely, and returns it to There are many similar models in use its original place. He repeats the process today across the country and around the again and again over the span of an hour, world, but over the last two decades, CIT maybe even longer. It’s clear he won’t be has become “one of the dominant para- buying anything. What’s he doing then? digms in the United States”2 for police The longer he remains, the larger the interactions in crisis situations involving questions looms. people in the community with mental, Eventually, an employee will approach emotional, or developmental challenges. the man and ask him to leave the store. The Through CIT training, police officers interaction will escalate rapidly, and the learn how to identify these conditions and police will need to be called. Now, what how to effectively de-escalate a crisis, the- began as a strange but innocuous situation oretically avoiding injuries to all involved. threatens to unravel and put multiple lives it’s no fault of either party. Police are the autism spectrum, are five times more The officers also learn how to link people at risk. trained to respond a certain way, and peo- likely to be incarcerated than people in the with the appropriate treatment, if neces- The man in question has autism spectrum ple with autism don’t look any different general population. Also, “civilian injuries sary, which is intended to reduce arrests disorder, unbeknownst to the employee or from anyone else. and fatalities during police interactions are and recidivism. anyone else in the store. He has the profile By age 21, one in five young adults with disproportionately common among this “The overall goal of the CIT training of someone who might receive services at autism had been stopped and questioned population.” program,” as the Bucks County CIT Task my nonprofit, Potential Inc., which works by police and five percent were arrested, Force webpage says, “is to treat mental ill- with people of all ages who have autism according to a 2017 study from the A.J. Growing Awareness ness as a disease, not a crime.” and other developmental disabilities to im- Drexel Autism Institute at Drexel Uni- As of 2019, the University of Memphis prove their communication, behavior, and versity.1 And according to research at the In 2006, as part of a larger effort to ad- CIT Center reported that there were social skills, among other basic needs. Children’s Hospital of Philadelphia, peo- dress jail overcrowding and reduce the rate In scenarios like the one I’ve just shared, ple with disabilities, including those on of incarceration among people with behav- see Police on page 33 PAGE 12 www.AutismSpectrumNews.org AUTISM SPECTRUM NEWS ~ SPRING 2021

Increase Neuro-Inclusive Housing in Your Community: Here’s How!

By Desiree Kameka Galloway, feel overwhelmed with the people, sights Autism Housing Network and sounds of urban life. and Denise D. Resnik, First Place AZ • People with autism living with senior caregivers are not counted in statistics as being at risk of homelessness even or most people with autism, hous- though they will likely lose their home ing is not affordable. It is a myth when their caregiver passes away or can that Medicaid pays for housing no longer support them. F(unless the individual lives in an institutional setting). If a person with au- • The majority of Fair Housing Act com- tism can access Medicaid Long-term Sup- plaints sent to the Department of Justice port Services (LTSS) that pays for staff, are for discrimination on the basis of transportation or programs necessary to disability. be part of their community but cannot afford housing, they will potentially be This may come as a surprise, but local displaced into the “next empty bed” of a community leaders and the housing indus- group home or host home potentially mul- try in general are not aware that people tiple counties away. Local leaders stand together as April 21 is declared with autism need housing. The reality is the While some may prefer a group home or “Autism After 21 Day” in Montgomery County, Maryland. public face of autism is often either a child host home, without planning these crisis or an autistic savant like the Good Doctor placements leave little room for choice of for Adults with Autism and/or Intellectual/ ty-specific federal housing assistance or Rainman - none of whom are interpreted preferred service provider. This displace- Developmental Disabilities: Shortcomings to live in their own home (Non-Elderly as needing deeply affordable housing. Un- ment can be traumatic and dismantles the of Federal Housing Programs1: Disabled Housing Choice Vouchers or less a housing developer or local official significant work and energy invested in Section 811 units). This is critically in- has a child with autism or other intellec- finding the right support and ecosystem • Housing assistance is set aside for people adequate considering the CDC estimates tual/developmental disability (I/DD), most like friends, faith community, jobs, day pro- with disabilities in general. This means nearly 5.5 million adults are on the au- people assume that they live with family or gramming, healthcare providers and more. “disability units” are most often inter- tism spectrum.2 the government takes care of everything. In the U.S., there are no federal programs preted as being wheelchair accessible, Unfortunately, these assumptions mean that provide housing assistance specifically not necessarily neuro-inclusive or incor- • Even if someone can access housing that the future of adults with autism or oth- to people with autism. Pooja Paode, a Dan- porating amenities that make housing assistance that is not disability-specific, er neurodiversities is not being considered iel Jordan Fiddle Foundation Adult Autism more accessible to people with autism. options are mainly rental units in urban in general community development. For Public Policy Fellow, has brought to light areas. While more easily accessible to these reasons, it is imperative that the the following important findings in her re- • Currently, fewer than 120,000 people public transportation, healthcare, jobs cently published policy review, Housing with disabilities benefit from disabili- and more, some autistic individuals may see Neuro-Inclusive on page 24 AUTISM SPECTRUM NEWS ~ SPRING 2021 www.AutismSpectrumNews.org PAGE 13

Teaching Community Skills to Prepare for Independent Living

By Todd Merritt, PhD, BCBA-D of performance and develop supports that and Jessica Basir, MS, BCBA will enhance skills that are needed. The Arc Westchester There are a variety of assessment ap- proaches that a team may use. A publicly available criterion-referenced assessment ndependent living may be concep- that is often used to identify skill deficits, tualized as a philosophy of individ- including community skills, is the Assess- ual control, peer support, self-help, ment of Functional Living Skills (AFLS) Iself-determination, equal access, and (Partington & Mueller, 2012). The AFLS individual and system advocacy, in order consists of six protocols, all of which fo- to maximize the leadership, empower- cus on fostering independence for adults. ment, independence, and productivity of While these publicly available assessments individuals with disabilities, and the in- provide comprehensive breakdowns of tegration and full inclusion of individu- various skills, they must be purchased, als with disabilities into the mainstream require training to effectively conduct the of American society (Rehabilitation Act, assessment, and may not capture individu- 1973). Federal regulations mandate that alized details of a person’s skills. people with intellectual and develop- If these publicly available assessments mental disabilities (I/DD) have a right to are not appropriate, the team may assess live as independently as possible and that a person’s skills using individualized task providers help a person reach this goal analyses. A task analysis breaks down any through the supports and services pro- I/DD, DiGennaro Reed et al. (2014) identi- Although previous research has identi- complex skill or a series of behaviors into vided throughout their lifetime (Develop- fied a variety of variables that may contin- fied some barriers to independent living, it smaller, teachable units (Cooper, Heron mental Disabilities Assistance and Bill of ue to pose barriers to an individual’s abili- is the responsibility of the person’s team to and Heward, 2007). Task analyses can be Rights Act of 2000, P.L. 106-402; IDEA, ty to live independently. These researchers identify individualized skills that will ad- one of the simplest and most individual- 2004). These supports and services are conducted an anonymous survey of 152 se- dress these barriers and better promote in- ized ways to assess community skills re- required to begin in school programs as nior citizens, paid staff (e.g., professionals, dependent living. The team responsible for lated to independent living. Once the team part of a student’s Individualized Educa- paraprofessionals, advocates), and family designing and implementing the supports has identified the person’s skill deficits, tion Program (IEP) and continue to be re- members of individuals with disabilities and services must follow a person-centered the next step is to develop the supports and quired in adult services through the Home who identified personal safety, assistance planning approach, which includes the in- services that will be provided through for- and Community Based Services Waiver’s with household skills, assistance with dividual with I/DD and their natural sup- mal or naturalistic teaching opportunities. final rule (Home and Community Based medications, assistance with daily living ports (e.g., friends and family members). Formal instruction is seen most often Services, 2014). Although these guidelines skills, fire safety, loneliness, and severe The first step in identifying the skills to tar- within school and in-home support seek to enhance the level of autonomy and weather safety as some frequent barriers get for instruction is to conduct an assess- independence experienced by people with to independent living. ment to identify a person’s current level see Teaching on page 30 PAGE 14 www.AutismSpectrumNews.org AUTISM SPECTRUM NEWS ~ SPRING 2021

Organizational and Individual Change: The Road to Inclusion

By John Bryson, MS Ed, CESP of equitable options for employment, hous- and Brad Walker Simple Strategies to Encourage Inclusion ing, and social engagement for many indi- NEXT for AUTISM viduals with ASD. Confronting stereotypes Inclusive Strategy Individual Example Organizational Example through self-reflection is an uncomfortable but crucial step in the process of promoting eople with disabilities face many Evaluate biased attitudes Engage in self-reflection Conduct comparative inclusive communities (Slater, 2020). documented barriers to full in- toward people with ASD focusing on changing analysis of employee The stereotype that people with ASD clusion in society. According to biased attitudes demographics and prefer to perform repetitive tasks at work PArticle 3 of The United Nations community demographics has negative effects too. If an employer Convention on the Rights of Persons with believes an employee with ASD only has Disabilities, one of the primary barriers is an aptitude for repetitive tasks, they’ll be the general public’s attitudes towards peo- Address systemic barriers Ensure your faith commu- Implement inclusive overlooking that person’s full potential. ple with disabilities. (Merrells, Buchanan to full inclusion of people nities’ children’s and adult hiring practices that focus For example, Charles, an academic, most & Waters, 2018). Discrimination experi- with ASD learning programs are on attracting, supporting, apt at conducting complex analyses of lit- enced by individuals with Autism Spec- inclusive of people with and retaining talent with erature, accepted a job he was offered be- trum Disorder (ASD) limits their access ASD and those with ASD and other disabilities cause he needed to work. The job involved to social and recreational activities, em- learning differences the completion of repetitive tasks. He was ployment opportunities, living accommo- not successful at the job he was hired for dations, and community resources. Social and eventually lost the job due to poor per- stigma may also contribute to co-occur- Increase personal contact Reach out and offer to Launch disability-specific formance. His next employer understood ring depression, anxiety, and other mental and build relationships have lunch with a employee resource groups his specific interests and abilities, and took health conditions (Botha & Frost, 2018). It with people with ASD colleague with ASD, be that share goals with a the time to meet and listen before forming is also important to note intersectionality comfortable with being variety of business an opinion on how he would fit into their of race, ethnicity and disability. The im- uncomfortable operations organization. In his current job he provides pact of discrimination is even higher for analyses of research and academic litera- these groups (Hassiotis, 2020). ture to team members. He has never been To improve public attitudes and reduce vidual bias is social avoidance: community a colleague, a family member, or through happier. People with ASD can thrive when stigma change must occur at the personal members avoid a person with a disabili- the development of a friendship can social people confront personal bias and value and organizational levels (Fisher & Purcal, ty because of their social discomfort. For avoidance be mediated and these biases be diverse backgrounds, choices, preferences, 2017). Every community member can pro- many, that is the result of having no pre- confronted and changed. skills, and abilities of people with ASD. mote inclusion by taking steps at the indi- vious contact with people with disabilities. Stereotypes stigmatize people with ASD. Personal attitudes and beliefs are not the vidual level. Self-reflection is the first step (Slater, 2020). Developing interpersonal For example, it’s falsely believed that peo- only barriers to inclusion. Change must also in addressing individual bias. That requires relationships with individuals with ASD ple with ASD need to be taken care of, they occur at the organizational level (Fisher awareness of attitudes that guide thoughts, is essential to redress these biases. Only drain society resources, they are weird. behavior, and feelings. An example of indi- through personal contact with a neighbor, Sadly, these beliefs contribute to the lack see Inclusion on page 30 AUTISM SPECTRUM NEWS ~ SPRING 2021 www.AutismSpectrumNews.org PAGE 15

Finding Home: Creating a Home that Supports the Individual

By Becky Lipnick the condominiums is that Life Skills In- Communications Lead structors (LSIs) support individuals like Vista Life Innovations Abigail as they adapt to handling everyday tasks. Abigail is also learning to schedule plans with her friends from the dormitory, any young adults dread being something which will help her stay social asked, “What are you going when she moves into her own home in the to do after high school?” community. Once students are ready to live MAnd this is especially true independently, many decide to find homes for those with autism and other disabil- along the shoreline because of friendships ities. For many individuals with autism made while at Vista. or other disabilities, it can be a big step Following a successful stint of “condo- to leave their family home. Some choose minium living” under Vista’s guidance, to attend a post-secondary program away students graduate from our core training from their families, learning the life skills program and move into the community that they will need to manage their own in a variety of settings. Currently, Vis- household, establish and keep meaningful ta supports nearly 100 homes along the relationships with peers and in general live Connecticut shoreline, each of them per- life to the fullest...but even after attending son-centric and unique in their design. In a post-secondary transition program, it Patrick’s case, as an adult with autism in can be hard to imagine what comes next. Westbrook, he is glad to be living with his A program like Vista Life Innovations Patrick and his housemates about to share four housemates during the pandemic. Par- knows this firsthand, having guided mem- “family dinner” together at their home ticularly during this time of social distanc- bers for over 30 years. While not always ing, the housemates are enjoying spending straightforward and smooth, by utilizing test their independence. Living with up to the dormitory can be especially valuable time together for birthdays, board games, and supporting a range of housing types three housemates, students receive limited for those with autism and other disabilities movies at home, and their regularly sched- and opportunities, there is a housing an- (but always available if needed) support who struggle to adjust to change (National uled family dinners. “One of my favorite swer for everyone. from Vista’s staff. Jordan Shamas, a mem- Autistic Society, 2020). memories with my housemates is a water As a way to test community living, after ber of Vista’s programmatic leadership, Abigail, a student who recently moved balloon fight we had over the summer,” being in a dormitory setting where teach- explains, “The transition condominiums into the condominiums, has hung chore Patrick says. “It was really, really hot. Oh ing and training occurs 24 hours day, Vis- allow the students to get a feel for living checklists around her condo with pictures yes, cooling off was the thing to do, and ta offers a “middle step” to independent independently. They get to practice taking and notes to remind her to complete tasks, it was fun to have everyone join in!” The living through the use of a condominium care of their home and organizing their especially the ones that she must do more housemates each contribute to taking setting. In these transition condominiums, schedules using whatever strategies work frequently now that she is living in her students are afforded the opportunity to for them.” Getting used to life outside of own space. One of the great benefits of see Finding Home on page 37 PAGE 16 www.AutismSpectrumNews.org AUTISM SPECTRUM NEWS ~ SPRING 2021

AHRC NYC Artists Dive Deeper Into Art and Self-Expression With Guidance From MoMA Educators

By Lynn Uhlfelder Berman feel when working and how it can relate to AHRC New York City practices in their own lives,” she said.

With Autism Awareness Month just be- MoMA Focuses on Adults with I/DD ginning and Developmental Disabilities Awareness Month just ending, AHRC New Prior to COVID-19, McGee, who has York City is proud to recognize The Muse- been with MoMA for 18 years, has worked um of Modern Art, just one of our wonder- with many different groups, including peo- ful community partners, which is raising ple with disabilities. The museum strives the profiles and enriching the lives of art- to make the museum accessible to every- ists throughout AHRC NYC. one. Once COVID-19 spread, the team could no longer work off-site with every he pandemic is bringing out the partner. “One audience we identified as best in some artists with autism a priority was adults with I/DD,” McGee and other intellectual and develop- said. “Adults with I/DD could use that so- mental disabilities (I/DD). Talents Elvin Flores with one of his pieces cial connection and engagement with the Tom Gambaro, of Brooklyn, with T one of the hospital staff figurines are emerging where parents never imag- museum.” ined. The inspiration comes from AHRC celled during several challenges. “I drew AHRC NYC’s Jonathon Epstein, Transi- he molded out of clay New York City’s partnership with The Mu- birds watching TV on the beach,” he says. tion Developer in Adult Day Services, is a seum of Modern Art (MoMA) Educators. “If I can accomplish one challenge, I know Steering Committee Member of the Muse- is expressing himself every day through Carrie McGee, Assistant Director, Com- I can accomplish other things.” um, Arts and Culture Access Consortium, art - with or without the actual sessions. munity and Access Programs with MoMA’s Another challenge asked artists to create which strives to increase people with dis- This is new.” Department of Education, and Theresa a work that reflects the way you feel. Tyler, abilities’ access to New York City’s cultur- “The difference that I have been able to Rodewald, Assistant Educator, Communi- who is soft spoken, drew a mountain with al institutions. Jonathon connected MoMA see in his pre-pandemic world view art- ty and Access Programs, remotely share eyes in it. He titled it “Silence,” reflecting Educators which led to regular sessions work is that he seemed to be able to draw pieces from the MoMA collection. They the feeling of always being watched with- with artists supported at ArTech. energy from those around him and some- engage the artists, asking what they see and out finding solitude in this space. The powerful impact of the partnership how put that into his work. I believe that is how it makes them feel. Each week they Before working with MoMA, Pola-Ana is apparent. “Making art and connecting why it was more difficult for him to draw provide a MoMA Challenge, providing a Mora, AHRC NYC’s ArTech Manager, with others over it can be really meaning- at home. At home now, he takes what is in new level of expression for many artists. said the group would only explore art on ful over time,” McGee said, adding that en- front of him - a smaller world view - and Cory Tyler, 41, of the Bronx, has ex- the surface. “They’re asking how artists gaging with art offers the artists an oppor- interprets it.” tunity to express themselves intellectually Making people happy with his art is im- and emotionally. portant to Flores. “As a person, he is al- Some individuals who never have partic- ways looking to see how he can help oth- ipated in art programs are creating beauti- ers,” Santiago said. “As an artist, I believe ful work and sustaining it, Darinka Vlahek, he wants to do the same thing.” Director of Arts and Community Outreach, said. “They may not express themselves Art Changes a Life verbally, but they are expressing them- selves with art. That’s part of the value of Art has changed Claudia Danies daugh- creating art in COVID.” ter, Sydney. “She’s not the same person,” Danies said. “I think art has taught her that Artist Takes Matters Into Own Hands if you do something positive, you get the attention.” You can hear empathy, as Tom Gambaro Sydney is calmer and more attentive, describes the pandemic. Danies said. She has no trouble sitting for “When I saw what was happening during a 90-minute Zoom session with MoMA or this crisis, it felt really bad,” Gambaro said. the AHRC NYC arts staff. “Most of the patients in the hospital could “Sydney has so much more confidence be relatives of other people or even old in herself,” said AHRC NYC’s Vlahek. friends. So that’s when it hit me. I decided “Asking her how she feels about some- to take matters into my hands.” thing helps her think and puts her in a posi- The Brooklyn artist, inspired by MoMA tion to see she can do things.” Educators and the AHRC New York City The walls in Danies’ Queens home art staff, has molded 20 clay figurines of are covered with art. She has many artist doctors and nurses. He works on his own, friends. Her daughter never expressed in- but the feedback, delivered through remote terest in going with her to a museum or sessions, has provided an additional spark. creating her own art. But even that has He has sold 11 figures on his Instagram changed. Since participating in AHRC page: @thomastheamazingartist. He will NYC’s art program, Sydney has joined her donate a portion of the proceeds to a local mother on two museum visits. She asks hospital. questions and expresses interest in differ- “I’m awfully glad they love it,” he said ent exhibits. with a smile. “I kind of feel amazed.” When Sydney showed her mother her interpretation of Van Gogh’s Starry Night, Virtual Art Sessions “A Blessing” drawn on notepaper, Danies was im- pressed, as was Sydney. She asked how she Millie Santiago’s son, Elvin Flores, knew the drawing. “It’s a very good inter- calls the virtual art sessions “a blessing.” pretation,” Claudia said. “Kudos to AHRC “For over 15 years, Elvin has been an art- NYC for raising the bar,” she added. ist who never wanted to draw or paint at home,” she said. But that changed when Lynn Uhlfelder Berman does Public/Me- AHRC NYC’s programs went remote. “He dia Relations for AHRC New York City. AUTISM SPECTRUM NEWS ~ SPRING 2021 www.AutismSpectrumNews.org PAGE 17

Robot-Assisted Instruction for Children with Autism: How Can Robots Be Used in Special Education?

By Jean-Pierre Bolat cial skills and facilitate communication. CEO Such an innovative approach will enable MOVIA Robotics, Inc. the robot to provide the same stimulation that individuals with autism receive in oth- er environments. It will also help the child n today’s high-tech world, quality focus his or her attention on the interaction teaching in special education is an rather than on the lack of response, allow- essential factor that many special- ing the child to focus on the nature of the Iists need to fulfill. Special education social situation. teachers are well-trained and often receive This technology represents a significant the latest skills and resources to provide leap forward in research and development. effective intervention for children with au- Robot-Assisted Instruction for children tism. However, high expectations and lim- with ASD is indeed a remarkable develop- ited funds make it difficult for classrooms ment in educational intervention. to provide the best enrichment that many children with special needs require. Being The Benefits of Robotics forced to use old, outdated equipment may in Special Education compromise the goal of special education programs. Robotic technologies, however, An education is about more than just allow educators to use the latest techno- being able to pass a test score, and the de- logical breakthroughs, helping students Credit: Maring Visuals velopment of a child’s mind and learning learn while also engaging them in exciting ability goes beyond just basic memoriza- activities and social experiences that en- Jean-Pierre Bolat, CEO of MOVIA Robotics, tion. On the contrary, an education is about rich their minds. with robots Kebbi and Misty II helping each student grow and develop in One way to utilize robots for special a healthy, nurturing environment. For any needs education is by personalizing tech- particular social cues, such a child needs a tive to traditional methods for teaching teacher who values the importance of en- niques to fit each individual student’s com- safe, anxiety-free, and calming atmosphere and training their children. This program couraging creativity, inventiveness, and ex- munication, social, and learning needs. As in which he or she can practice and make could change a child’s life, providing bet- ploring new ideas, the benefits of robotics technology advances, it is only a matter of mistakes without judgment or fear. Robots, ter preparation for primary education and in special education will prove invaluable. time before students can easily access the however, are now being programmed to fundamental life skills learning. The benefits of robotics in special edu- best and latest technological opportunities help handle these and similar challenges. Roboticists aim to create robotic sys- cation are essential for parents, caregivers, for improved education. We all know that robots cannot replace tems that can work alongside a patient in teachers and learning specialists, and this a therapist-based program to improve so- see Robots on page 37 The Challenges Faced by Children is definitely true; however, the digital age with Autism Spectrum Disorder has certainly paved the way for incredible advancements in all sorts of industries, in- Children diagnosed with Autism Spec- cluding education. Robotics in education trum Disorder (ASD) experience many can be used to support, assist, and augment difficulties in traditional school settings. the teaching professional, thus allowing These children need to learn how to inter- more opportunity for the professional to act with their peers, make friends, work assess, observe, and analyze a child’s per- with other children, and solve problems in formance. Education is such a high priori- a natural, uncontrolled environment that ty because, unlike many other fields, it is is accepting and enriching. This can be a tough to predict what the requirements of difficult challenge for children with ASD. tomorrow might be. This makes teaching However, there is a useful tool that teach- special needs students especially challeng- ers can leverage. Using robotic technology, ing, so using various assistive tools and children with ASD will be able to practice techniques is often a great idea. these needed skills in a safe, non-judgmen- Roboticists and software engineers are tal, and fun way. By using robots for special continually working on the development needs education now, by the time the next of Robot-Assisted Instruction for special generation arrives, many of the common needs education. These robots will help challenges facing today’s children with children with learning disabilities and disabilities will be things of the past. The teach the essential skills that many take for new paradigm of teaching will then involve granted. What’s more, with Robot-Assist- robotic innovations that will profoundly af- ed Instruction, parents can look forward to fect education, technology, and society. a bright, new future of interactive learning.

Educational Intervention of Interactive Robots for Autism Robotic Assistive Technology Interactive robots are the next generation Robotics used to have a somewhat nega- of treatment options available to children tive connotation when it came to the subject with ASD. To assist in working with pa- of autism by those who question the effica- tients, therapists and teaching specialists are cy of robotics as assistive technology. The now using the latest robotics technology. fear and stigma attached to robotics as be- While they are constantly developing ing “non-human” are enough to discourage and improving, these robotic systems al- some parents from wanting their children ready provide a much more robust inter- to use robotic technology in any way. This action than is sometimes achieved by only stigma, however, is rapidly disappearing as conventional instruction in special edu- more and more people discover the over- cation. As negative behaviors are often a whelming benefits and opportunities robots barrier to educational access, robots can be provide. Since a child with ASD demon- key to eliminating children’s frustrations strates various characteristics, ranging from by allowing them to express themselves finding difficulty communicating with more fully. With an enhanced technolog- others to lacking appropriate responses to ical system, parents will have an alterna- PAGE 18 www.AutismSpectrumNews.org AUTISM SPECTRUM NEWS ~ SPRING 2021

Perspectives From Two Adults Living Independently in the Chapel Haven Community

Brave, Bold Kimber York City and Boston. If you ever want a big city metropolitan vibe, New Haven is By Kimber Marchesi located between those two places and is just an hour drive. As of 2021, aka the pandemic era, I am imber Marchesi came to currently a community member working Chapel Haven Schleifer with the Chapel Haven CareerAbility vo- Center from her hometown cational department to get me enrolled in Kof Darien, CT in 2013. She a healthcare program that could get me learned how to live independently while a certification that would qualify me to enrolled residentially in Chapel Haven’s work in a healthcare setting. Yale-New REACH program, graduated and now Haven Hospital is also a great aspect of lives in her own apartment in the com- New Haven seeing how it is rated as a to- munity, accessing Chapel Haven’s Sup- pnotch healthcare facility throughout the ported Living services. She publishes her nation. own blog and wrote this column in early Now, before I end this article. I would February 2021. Kimber Marchesi John Nobiletti like to give some advice for students and You can view the blog here: https:// parents seeking programs. Chapel Haven braveboldkimber.blogspot.com/2021/02/ with lots of things to do, and have an awe- manage it day by day. would be the one, it is top rated through- chapel-haven.html some job! When I do go home for a visit, it usually out the country and sadly there are not I came to Chapel Haven in 2013 right takes 8 hours from where I live in Penn- any comparable programs in most areas (I when I got out of high school. I was 18 and Mastering Independence sylvania to travel to New Haven/Chapel wish there were). It revolves around hard was scared to go to a new school where I at Chapel Haven Haven. I usually travel by car in which my work, being positive and being motivated. had to meet new friends and learn life skills. parents drive me. I currently do not own a Also, they have great recreational activi- Before I came to Chapel Haven, I had no By John Nobiletti vehicle and I have not mastered the sub- ties. It will be a great experience. Thank clue as to what life skills were. As I pro- way system. I will be traveling by train in you all at Chapel Haven for helping me gressed in Chapel Haven, I learned many n this article I will be writing about the near future. defeat my battle and making this possible life skills including laundry, cooking, and what Chapel Haven is, as well as how I’ve got to give major applause to Chap- for me. cleaning. it helped me along the way with my el Haven for helping me to overcome the I am very grateful for Chapel Haven Idiagnosis. difficulties I was trying to fix, in many About Chapel Haven: Founded in 1972, and have continued to use the life skills in Chapel Haven is an independent living different areas of my life. There is a new Chapel Haven Schleifer Center is an my apartment! After I graduated from the facility serving adults with various disabil- motto in my book: there is no such thing as award-winning, nationally accredited tran- first program Chapel Haven offers, which ities. At one point, I was diagnosed with you can’t. It all comes down to motivation, sitional living program and approved pri- is called REACH, I moved into the next Autism along with an anxiety condition. willingness, as well as dedication. vate special education devoted to helping program called BRIDGE, where the school As soon as we got the news, my family and I have been a part of the program since adults with cognitive disabilities and social introduces apartment living to folks that I began searching through programs that 2013. One thing I’ve got to say is, that the disabilities live independent and self-de- still need a little support from the support would best fit me and help me get on my whole faculty of Chapel Haven does great termined lives. Chapel Haven Schleifer coordinators. way to thrive. work and cares about every student that Center has grown to serve more than 250 After a year of BRIDGE, I moved off Chapel Haven is known as a state-of-the they serve. When I first started, I was in adults (18 years of age and older) in the campus to the next level which is called art program throughout the world, as they a huge holding pattern on navigating my residence and the community with two dis- COMMUNITY. I’ve lived in the com- accept clients and students from through- life in the right direction. Thankfully I was tinct programs; REACH and Asperger’s munity now for four years, starting with out the world. Chapel Haven teaches all able to get the right support and stamina Syndrome Adult Transition (ASAT). Chapel a roommate in an apartment, and now I the aspects of life, such as hygiene, cook- that got me through the barrier that I was Haven Schleifer Center recently complet- currently have my own apartment and ing, cleaning, shopping, traveling, how to navigating through and it was not easy. I ed a $41.5 million campus expansion at love it! manage money, as well as managing living can kind of compare it to steering a ship its founding campus in Westville, CT that I work at an art studio run by Chapel Ha- with a roommate. - you are steering the ship, so you need has delivered a new, four-story REACH ven Schleifer Center called UArts where When I first started my journey at Chap- to have support and teamwork. Along the residential and classroom campus; a new the artisans are community members. I el Haven, I was a bit anxiety-filled about way, I came across some great friends and Welcome Center, and, in 2020, the Schleif- work Mondays and Wednesdays, and of- what my first time being away from home teachers. er Adult Independent Living (SAIL) center, ten pick up additional shifts. I so enjoy would be like. In my first few months, it Chapel Haven’s location is in the West- designed for adults to age in place in a working there! I am very fortunate to be took me awhile to adjust. From time to ville, New Haven area. The location is vibrant and non-institutional setting. Con- a part of an amazing community where I time I would be tempted to return home. great. It has a city/suburban atmosphere, tact us: [email protected] or go have friends. I live in a great city filled But I continued to fight through it and and it is conveniently located between New online to www.chapelhaven.org AUTISM SPECTRUM NEWS ~ SPRING 2021 www.AutismSpectrumNews.org PAGE 19

Tools for Growth: Facilitating Community Living Skills Opportunities in Preparation for Independent Living

By Crystal Hayes, MEd and planning for the future. During the and Misty Wagner planning process, the team supports the College Internship Program (CIP) individual with identifying the level they are currently involved in their community versus their desired level of involvement raduating high school, going to (Callicott, 2003). When an individual college, finding an apartment, enters the self-acceptance stage, they landing that first job, getting are ready to confidently make changes, Gmarried - these are all exciting accept help and seek services within the milestones associated with the transition community. from high school to independent living. Self-advocacy is an essential compo- For adolescents with autism, formal plan- nent in nearly all aspects of life, as each ning for this transition begins at age 14 individual identifies what they want in life, with the IEP team, however, it is never too how to get it, and who will assist them. early to begin introducing and reinforc- As confidence grows, individuals begin to ing important independent living skills self-disclose and accept accommodations such as problem solving, adaptability, and leading to a healthier and more conducive self-advocacy. school and work environment, as well as Many young adults on the autism spec- better access to direct support services. trum have the strong desire to experience Finally, the last step on the continuum of these common milestones, yet reality of- CIP Long Beach students head out for walking and running club growth, “self-determination allows the ten presents stark differences in outcomes. ASD or LD adolescent or young adult to According to the National Autism Indi- (CIP), focus on actively engaging young grocery shopping, and apartment safety, to start co-existing with comfort in the sur- cators Report (2017), more than half of adults in the community and facilitating navigating public transportation, schedul- rounding ‘neurotypical’ world” (McMan- adults with ASD continued to live in the the acquisition of independent living skills ing personal appointments, and identify- mon, 2016, p. 31). family home after high school, and 40% in a supported living environment. CIP, ing health care providers. While the list of those surveyed did not receive any which combines components of residen- of functional skills and competencies is see Growth on page 25 in-home supports. Even more alarming, tial living, socialization, academic sup- extensive, three foundational skills that a similar report found that “nearly one port, and vocational preparation, provides influence success in independent living in three young adults had no community opportunities for young adults to learn emerge: 1) the ability to problem solve, 2) participation...no volunteer or communi- independent living skills in the natural the ability to adapt to changes, and 3) the ty service activities, no lessons or classes environment and with full range of access ability to self-advocate. The tools and pro- outside of school, or no other community to local community resources and experi- cesses outlined below are critical to em- activities outside of school” (Roux et al., ences. The goal is to provide the individu- powering individuals with ASD to develop 2015, p. 16). al with increasing levels of independence and apply these three foundational skills in A variety of factors contribute to what while maintaining levels of support that their daily lives. is commonly referred to as “the services promote continued growth. cliff,” the time immediately following high The natural environment for learning Continuum of Growth school when mandated special education independent living skills may be in the services cease and the individual is left individual’s residence, in the communi- The Continuum of Growth (McMan- to find support from other sources, often ty (i.e., the grocery store, the bank), or mon, 2016) guides the individual through without formal assistance. This lack of or- even through an online platform such as the process of better understanding and ac- ganized support increases the weight of re- Zoom if, for example, role-playing for an cepting their diagnosis in order to inform sponsibility on families. Parents of individ- online job interview is underway. Choos- decisions and actions that lead to a produc- uals with ASD may wonder how to identify ing the environment in which to prac- tive and meaningful life. the appropriate level of support and the tice these skills is an important aspect of Self-awareness, self-knowledge and least restrictive environment for their child self-awareness and self-advocacy, and self-understanding are crucial as the in- - ideally an environment where they will can be decided upon during the develop- dividual begins to acknowledge their own have the opportunity to build meaningful ment of the Person-centered Plan, as dis- personal traits and those of the people relationships, engage in enriching activ- cussed below. around them. Gradually becoming aware ities, and embrace independence to the of oneself and surroundings, they begin greatest extent. Tools for Growth to discover unique strengths, recognize While independence doesn’t look the obstacles, and better understand how they same for everyone, comprehensive pro- Community living skills range from car- fit within a community. In this stage, an grams such as College Internship Program ing for personal hygiene, self-medicating, individual is able to begin visualizing PAGE 20 www.AutismSpectrumNews.org AUTISM SPECTRUM NEWS ~ SPRING 2021 AUTISM SPECTRUM NEWS ~ SPRING 2021 www.AutismSpectrumNews.org PAGE 21 PAGE 22 www.AutismSpectrumNews.org AUTISM SPECTRUM NEWS ~ SPRING 2021

Options from page 1 more enjoyable. Common physical ame- nities range widely from sensory-friendly urban life is convenient and empowering, design and security features to smart-home while for others it can be overwhelming. technology and transit access. When con- Think about the type of location, home sidering housing, individuals and their size, shared living opportunity and prop- families can match their life goals, inter- erty type that foster overall well-being for ests, lifestyles and LTSS needs with the you or those you serve. available physical amenities. Choosing where to live is also tied to Supportive amenities are supports or desirable life goals. When exploring hous- features that are part of the property and ing options, consider whether the lifestyle, benefit any and all residents; they are not supportive amenities, physical amenities, individualized LTSS. Common support- access to the broader community, including ive amenities range from community life jobs, education, healthcare and more align. and life-skills training to meal service and Choices are also contingent on whether health and fitness activities. The cost of or how a long-term services and supports supportive amenities may be covered in (LTSS) provider and LTSS delivery model rent or through out-of-pocket fees. coincide with desired experiences and out- For some people on the autism spectrum comes. LTSS is the term for assistance with who do not have an intellectual disability day-to-day tasks such as meal preparation, or may not be eligible for Medicaid-funded personal hygiene, housekeeping chores, LTSS, these physical and supportive ame- social outings and general assistance inside nities can be the difference between home- and outside the home. A resident of Marbridge in Manchaca, Texas enjoys a workout. lessness and successful independent living. Fitness centers are a key amenity for attracting prospective residents. 2. The Housing/Service Provider Connection 5. Funding Options setting, including communication with the by daily routines, frequency and nature of The ability for people with disabilities to landlord and maintenance/repairs. care, and those who support them. LTSS To live in a consumer-controlled setting, live in a home of their own is largely dic- Although most consumer-controlled are covered out-of-pocket or through Med- one must be able to afford rent. Affordable tated by the LTSS they can access in that properties are rental units, there is grow- icaid. Support needs must be aligned with housing is very difficult to access. Fami- home. Two main categories exist for how ing demand for home-ownership options to the LTSS delivery model and provider that lies should begin planning for housing LTSS and housing may be related: provid- avoid fluctuations in the rental market and best suit the individual’s needs. Some peo- costs well in advance and, if needed and er-controlled and consumer-controlled. bypass landlords. There is also a growing ple may only need drop-in support, others possible, apply to be put on the waitlist for In provider-controlled settings, the res- trend of consumer-controlled, planned com- may have moderate support needs and still housing assistance from the local Public ident and LTSS provider are exclusively munities with built-in amenities designed to others may require higher levels of support Housing Authority. linked. The provider takes care of all hous- serve individuals with autism or I/DD who such as 1:1 support to help them navigate Housing choices are largely determined ing details and cannot be changed. Resi- choose their preferred LTSS provider. The on a daily basis. by access to LTSS. Adequate Medicaid dents pay rent or an all-inclusive fee to the property may also include unique support- funding for someone with high support service provider. If for some reason this ive amenities, including various transporta- 4. Physical and Supportive Amenities needs to live in a consumer-controlled set- provider can no longer support the resident tion options, a meal plan, organized life skill ting is not available in most states. Advo- as agreed, the resident must relocate. Exam- or social activities, or other cognitive-acces- Builders and housing providers are de- cacy efforts can change this! Individuals ples of provider-controlled housing include sible features, to name a few. veloping their properties in ever-diverse and their families must explore the differ- traditional group homes, host family homes ways, with some offering abundant amen- ent funding options (often called “waivers” or tuition-based residential programs. 3. Support Needs ity packages attractive to the neurodiverse that vary by state) and the reputation of the In consumer-controlled settings, there market. Consider the growing list of both LTSS providers in their local area. Various is no link between the residence and the Deciding how services are delivered physical and supportive amenities that ex- funding sources are also listed in A Place LTSS provider; each resident chooses their and by whom is an important step in the tend beyond the property type and LTSS in the World. own provider and can change them if need- process. An individual’s level of support delivery model. A new generation of supportive housing ed and stay in their home. The resident is needed for personal wellness and com- Physical amenities are built-in, residen- options are in demand and being delivered. in control of and responsible for their home munity integration is strongly influenced tial features that can make life easier and The goal of A Place in the World is to fuel a robust marketplace while helping individu- als and their families recognize that a diag- nosis need not stand in the way of friends, jobs, supportive communities - and homes of their own.

Helpful YouTube Resources:

• A Place in the World: Fueling Housing and Community Options for Adults with Autism and Other Neurodiversities: www. firstplaceaz.org/a-place-in-the-world/

• A Place in the World: Fueling Housing and Community Development for Neu- rodiverse Populations: www.youtu.be/ BKzaf_wnR7Y

• A Place in the World: Housing Market Guide Example, First Place AZ: www. youtu.be/CR3UaUYZy0Q

Desiree Kameka Galloway is the direc- tor of the Autism Housing Network, a proj- ect of the Madison House Autism Founda- tion, and a sought-after disability housing expert. Denise D. Resnik is the parent of an adult with autism; founder, CEO and president of First Place AZ; and co-found- A page out of the “A Place in the World’s Housing Market Guide,” a comprehensive resource er of the Southwest Autism Research & Re- featuring various properties around the country servicing a range of needs and preferences. source Center (SARRC). AUTISM SPECTRUM NEWS ~ SPRING 2021 www.AutismSpectrumNews.org PAGE 23

Your Child’s Right to an Appropriate Transition Plan

By Oroma Mpi-Reynolds, Esq. ment and other post-school adult living skills to a variety of home and community Founder & Managing Attorney objectives; settings.9 Activities may include the devel- MSR Legal & Consulting Services, PLLC opment of customer service skills at the • includes the acquisition of daily living local grocery store; instruction on the safe skills; and use of public transportation; career and ne of the main objectives of the technical education; instruction towards Individuals with Disabilities Ed- • incorporates a functional vocational career development and occupational stan- ucation Act (IDEA) is to ensure evaluation.4 dards; cooking; laundry; personal fitness; Othat children receive an appropri- therapeutic recreation; leisure education; ate education that prepares them for further In New York State, beginning at age functional communication training; travel education, employment, and independent 12, your school district should conduct training; and social skills training. living.1 Accordingly, school districts must an inventory of your child’s vocational With your or your adult child’s consent, develop Transition Plans that are results-ori- and post-secondary interests.5 By age 14, the school should engage community re- ented. Transition Plans are designed to im- districts in New York begin developing sources and invite participating agencies to prove your child’s academic and functional transition goals, aligned with your child’s support a smooth transition to post-second- achievement and to facilitate his or her move- academic goals, aimed at promoting a sol- ary life. For example, you may need: ment from school to post-school activities.2 id foundation for higher education or vo- cational interests.6 The IDEA requires that • to petition the court for guardianship Post-school activities include: every individualized education program over your adult child; (IEP) created for a child aged 16 or older • Post-secondary education, include appropriate, measurable post-sec- • to apply for long-term care through your Oroma Mpi-Reynolds, Esq. ondary goals based upon age-appropriate State’s home and community-based • Vocational education, transition assessments. 7 Your child should Medicaid waiver program; or A Transition Plan should be a plan that: work on Transition Skills based upon his or • Integrated employment, her needs in particular areas. • a referral to your State’s Vocational Re- • is based on your individual child’s needs; An appropriate Transition Plan will habilitation Services agency. • Supported employment, include a coordinated set of activities, • takes into account your child’s strengths, known as Transition Services.8 Transition As your child approaches his or her • Continuing and adult education, preferences, and interests; Services, including courses of study, are pre-teenage years, try to learn as much as needed to assist your child in reaching the possible about your child’s post-second- • Adult services, • includes instruction and related services; postsecondary goals identified on his or ary school interests. If possible, your child her IEP. Your child should have regular, should attend all meetings where Transi- • Independent living, or • includes community experiences; structured opportunities throughout the tion Goals and Transition Services will school day to acquire specific skills within • Community participation.3 • includes the development of employ- community settings and to generalize those see Child’s Right on page 36

Special Education Law and Children’s Advocacy

If your child has an IEP, give us a call!

Long Island: 503 Linden St., W. Hempstead, NY Queens: 89-18 134th St., Suite 1, Richmond Hill, NY

www.MSRLegal.org Call / Text: (516) 725-5514 PAGE 24 www.AutismSpectrumNews.org AUTISM SPECTRUM NEWS ~ SPRING 2021

Housing and Supports: Parents are Vital to Positive Post-Secondary Outcomes

By Celeste Lenae Michaud, MA sidered “high functioning” because they Lecturer do not have a diagnosed cognitive disabil- University of Arkansas-Fayetteville ity, but may experience significant needs for support to lead the independent lives they desire. Unfortunately, qualifications eeley is a 23-year-old college for support tend to be based on cognitive graduate who was diagnosed test results rather than a consideration of with autism at age 8. To all those the whole person’s needs such as senso- Kacquainted with her, Keeley ap- ry, communicative, or self-advocacy dis- pears to navigate the community and man- crepancies in the desired environment. age her life independently. Despite her in- Parents that plan ahead, explore available dependence, Keeley experiences much of programs, and advocate work to overcome her day with communication breakdowns challenges and encouraging change with between herself and others such as friends housing and support needs for adults with and co-workers. Keeley also struggles autism. creating and maintaining organization such as planning her day, getting to work Planning Ahead on time, and planning for enough food be- fore the next trip to the grocery store. By Parents can substantially increase posi- the end of the day Keeley is exhausted. She tive outcomes for their child with a disabil- finds that she needs time to be herself after ity by actively engaging in the transition a day of adapting to societal norms and planning process during Individualized finds relief flapping her arms and shaking Education Plan meetings (Flowers et al., her head. Keeley wants to live on her own, 2018). Discussing future career and inde- however she and her parents have been disabilities not only need to locate afford- Understanding Qualifications pendent living aspirations can guide the unsuccessful in orchestrating a plan for able housing, but also need to weigh out team on which assessments to give and de- independent living that allows her to live qualifications for support services and Adults with autism without intellectual termine which skills are needed to work to- on her own and receive needed supports. medical coverage. These complexities cre- disability, sometimes referred to as “high wards these prioritized goals. Additionally, ate a challenge for parents, educators, and functioning,” appear particularly vulnera- ensuring that the appropriate partners from Introduction self-advocates as they work to create the ble due to a gap in supports and the mis- future environments and services, such as best individualized transition plan possible conception that minimal help is needed vocational rehabilitation specialist, can Living independent of your parents is a with the resources available. Parents can (Alvares et al., 2020). Such classifications promote positive post-secondary outcomes milestone many look forward to, but for implement a systematic strategy to im- are not helpful when they do not accu- (Flowers et al., 2018). some it becomes nearly impossible due prove post-school outcomes for indepen- rately describe a person’s experiences and to a complex set of barriers. Adults with dent living. needs. An adult with autism may be con- see Outcomes on page 32

Neuro-Inclusive from page 12 reviews zoning and housing development 3. Ask your local housing authority to ty action (Autism After 21 Day): www. applications, and shapes public policy re- prioritize housing assistance. youtube.com/watch?v=bz1TyKaLAhg voices of autistic adults and their families lated to growth, preservation and develop- are heard and their stories shared. ment. Ultimately, the planning department Housing assistance direct to individuals • Autism After 21 Day Toolkit: www.autism- You do not have to be a policy wonk or provides recommendations to an elected is managed by Public Housing Authorities housingnetwork.org/tool-kit-to-create-au- professional speaker to be a great advo- or appointed planning commission that (PHA) that oversee the local waitlists for tism-after-21-day-in-your-community/ cate! As long as you are willing to sched- either approves, denies or requests chang- affordable units or housing vouchers. They ule a meeting and share your story, you can es in community applications (including can create “preferences” in policy to pri- Desiree Kameka Galloway is the direc- make a big difference in your community. housing for people with autism or other I/ oritize critical needs in their community.56 tor of the Autism Housing Network, a proj- Here are three ways you can become a DD). This team also leads a process every Adults with autism living with aging fami- ect of the Madison House Foundation, and powerful advocate for more neuro-inclu- 10 years or so to create a comprehensive ly caregivers are part of an invisible hous- a sought-after disability housing expert. sive housing in your own community: plan that determines community goals and ing crisis of which they are likely unaware. Denise D. Resnik is the parent of an adult aspirations. Such a plan ensures growth in Tell them people with autism are extremely with autism; founder, CEO and president 1. Ask your local elected or appointed the community is sustainable for a balance low income and will be homeless or dis- of First Place AZ; and co-founder of the officials to declare April 21 “Autism of future housing, schools, healthcare and placed when their family caregiver can no Southwest Autism Research & Resource After 21 Day.” first responder facilities, green spaces, re- longer house or care for them. Although Center (SARRC). tail and other infrastructure like roads and they cannot create a preference for a spe- Local officials are charged with address- sidewalks. It is important that these two cific disability such as autism, they can Footnotes ing the needs of their immediate commu- important players in community devel- create preferences that would prioritize nity and coordinating government efforts opment understand the housing needs of this population to prevent displacement or 1. www.firstplaceaz.org/wp-content/uploads/ to help meet those needs. They also have adults on the autism spectrum so they can homelessness.7 APITW-Report-01.05.21.pdf#page=72 to be reelected and should be aware of the plan and ensure all public spaces, buildings voting power of the autism community. and events are cognitively and physically • Find your local PHA here.8 2. www.cdc.gov/ncbddd/autism/features/ accessible. adults-living-with-autism-spectrum-dis- • Schedule a meeting to share your con- • Plan a meeting and ask how the follow- order.html cerns for the future of adults with autism • Request a meeting with your local plan- ing preferences can be added to the PHA or other I/DD in your community and the ning department to share housing needs administrative plan: person with disabil- 3. www.autismhousingnetwork.org/tool-kit-to- risk of displacement. and how spaces in your community can ity, residency preference, single persons create-autism-after-21-day-in-your-communi- be more accessible; ask that they inten- with disability who are displaced or ty/ • Ask that they declare April 21 “Autism tionally include people with autism and homeless, or for specific units designed After 21 Day” to start raising acceptance other I/DD in the next comprehensive for people with I/DD receiving services. 4. www.autismhousingnetwork.org/apitw-2/ of and opportunities for adults with au- planning process. tism. This Autism After 21 Day Toolkit Including the interests of adults with au- 5. www.law.cornell.edu/cfr/text/24/982.207 with sample language can get you started.3 • Make sure to share with them the tism as an integral part of the community groundbreaking report, A Place in the means working together to ensure this of- 6. www.law.cornell.edu/cfr/text/24/960.206 2. Make sure your local planning depart- World: Fueling Housing and Commu- ten invisible and silent population is finally ment and “comprehensive plan” include nity Options for Adults with Autism and seen and heard. Your advocacy matters! 7. www.usich.gov/resources/uploads/asset_ people with autism. Other Neurodiversities, an indispensable library/PHA_WaitList.pdf guide for how future housing and com- Helpful Links In every community, there is a planning munity development can be more neu- 8. www.hud.gov/program_offices/public_in- department that provides design guidance, ro-inclusive.4 • You Tube video about local communi- dian_housing/pha/contacts AUTISM SPECTRUM NEWS ~ SPRING 2021 www.AutismSpectrumNews.org PAGE 25

Practicing with Compassionate Care: A Missing Piece in Behavior Analytic Training

By Ashley Kemmerer, MS, BCBA alyst Certification Board (BACB), most Clinical Supervisor practitioners work with individuals with Graham Behavior Services autism or other developmental delays. This means that many of us are working with families who are in varying stages of life ecoming and practicing behav- with a child that has a diagnosis. Wheth- ior analysis is often synonymous er they just received the diagnosis or have with a strong understanding of had years of therapies and supports, it can the technical components of be a major stressor. Ignoring the stresses Bbehavior change procedures. Our train- that our clients and their families are going ing often emphasizes skills such as the through can be a huge barrier to providing memorization of terminology until it be- successful services. comes second nature, evaluating and con- Imagine for a moment, someone comes ducting research, and implementing ev- to your home to help you with your child idence-based treatments. But while our or family member. As they ask you to de- technical skills and competence in these scribe your concerns you become visibly areas is important to our practice, there is upset and begin to cry. As you’re crying an element of our training that is missing. the professional says, “Ok great. Thanks That element is the ability to practice com- for that information. Let’s move on to the passionate care. Our jobs as behavior ana- next question.” How would that make you lysts almost always involve working with feel? Someone is in your home asking you people and, most frequently, the families of about sensitive issues and they completely young children. Yet we receive little to no dismiss your feelings. training in how to interact with families. empathy, and compassion. They define in the shoes of those you are working with When a family feels disregarded by the sympathy as the ability to feel sorry for and provide meaningful support based on person designated to work with their child What is Compassionate Care? another but not necessarily with a shared those feelings. it can lead to a negative rapport between experience. Empathy involves both per- the professional and family. There is evi- There is no technical definition in be- ceiving the feelings of others and under- Why Is It Important? dence from other fields such as medicine havior analysis to describe compassionate standing or being able to experience that and mental health that compassionate care care, but the components involved have emotion. Lastly, compassion involves an Although we know behavior analysis can lead to increased patient satisfaction, been identified. Taylor et al. (2018) de- action related to empathy that is meant to can be useful in many different industries adherence to treatment, enhanced quality scribe that compassionate care involves alleviate suffering. Generally, compassion- and populations, according to the most interpersonal skills related to sympathy, ate care refers to the ability to put yourself recent data provided by the Behavior An- see Compassionate Care on page 28

Growth from page 19 tions, and problem solving: engages young adults in their own learning collaboration within person-centered plan- and development, helps them build valuable ning. Focus on Autism and Other Develop- Person-Centered Planning (PCP) • What are your interests? self-assessment and planning skills, and mental Disabilities,18(3), 60. prepares them for an independent living ex- Person-centered planning is a process • What are the things you value in life? perience that best suits their specific needs. McManmon, M. P. (2016). Autism and that brings focused attention to the voice learning differences: an active learning of the individual, taking into account their • What are your strengths and what are the Crystal Hayes, MEd, is the Interim Pro- teaching toolkit. London: Jessica Kingsley unique strengths, obstacles, interests and obstacles you face? gram Director at the College Internship Publishers. personal goals, and outlining the support Program (CIP) in Long Beach. Crystal necessary to make their desired life a re- • What are your hopes and dreams? holds a BA in Music Education and an Roux, Anne M., Shattuck, Paul T., Rast, ality. Wehman (1998) commented, “All MEd in Special Education, and has worked Jessica E., Rava, Julianna A., and Ander- person-centered planning approaches be- • Who/what can help you make these in the field of education for nearly two de- son, Kristy, A. (2015). National autism gin with the belief that all individuals, dreams a reality? cades. Misty Wagner is the Head Student indicators report: Transition into young regardless of the type or severity of their Advisor at the College Internship Program adulthood. Life Course Outcomes Re- disabilities, not only benefit from services • What are all of the possible outcomes? (CIP) in Long Beach. Misty holds a BA in search Program, A.J. Drexel Autism Insti- provided by their communities, but also Special Education and has worked in the tute, Drexel University. offer their communities many gifts and • What can you do now to prepare for un- field of education for 5+ years. capacities. It follows then that all people expected changes in your plans? CIP is a national transition program for Roux, Anne M., Rast, Jessica E., An- should live and be contributing members young adults with autism, ADHD and oth- derson, Kristy A., and Shattuck, Paul T. of their communities” (p. 25). er learning differences. For information (2017). National autism indicators report: Self-advocacy is the cornerstone of per- Conclusion about their five year-round and summer Developmental disability services and son-centered planning. By exploring the programs across the US, visit www.cip- outcomes in adulthood. Life Course Out- following sample questions, support teams The PCP process, used in tandem with worldwide.org or call 877-566-9247. comes Program, A.J. Drexel Autism Insti- are able to facilitate self-advocacy oppor- the Continuum of Growth, can be an em- tute, Drexel University. tunities and ensure the young adult is in powering experience for individuals with References the driver’s seat when making decisions, ASD. Understanding that there is room for Wehman, P. (Ed.). (1998). Developing adapting to changes in routine or expecta- growth and taking charge of the process Callicott, K. J. (2003). Culturally sensitive transition plans. Austin, TX: Pro-Ed. PAGE 26 www.AutismSpectrumNews.org AUTISM SPECTRUM NEWS ~ SPRING 2021 Tenants Celebrate Two Years of Independent Living in New Residential Model for AHRC New York City

By Lynn Uhlfelder Berman very proud of them and happy to know that and Dylan Watton they’re able to do more than we expected.” AHRC New York City “This is precisely why we as a field need to raise expectations of the people we support,” said Marco Damiani, CEO, hen AHRC New York City of AHRC NYC. “Only then will society asked different depart- erase the stigma surrounding people with ments to identify perspec- disabilities and begin to see their abilities.” Wtive tenants with intellectu- “I always imagined I’d live on my own,” al and other developmental disabilities (I/ Katz said. “They said I wouldn’t be ready, DD) for 12 new Bronx apartments, it was but I was. I can do what I want in my own uncertain about what to expect. apartment.” But what is abundantly clear after two years is that a partnership among AHRC “Preparing Them for the World” NYC, the state of New York, and a devel- oper to create affordable housing in the Catherine Nunez, Assistant Manager, Bronx for people with I/DD has evolved recalled Rodriguez and Cuttito doing their into much more than a home. own packing. “But Nora was living here “They all know each other, have each for so long, I had to help her pick what she other’s phone numbers and hang out…all could take and pack her belongings,” said without staff intervention,” said Jennifer Nunez, who took on additional responsi- Teich, AHRC NYC’s Associate Vice Pres- Walter Glasco enjoys the view from the communal bilities when Aguiar was out on medical ident, Individualized Supports. “I didn’t outdoor space from Parkside Terrace in the Bronx leave. “I helped them pick their furniture expect them to gel organically the way and set it up. It was a lot of back-and-forth.” they did.” A Place to Call Home them living with her again. The women looked forward to being Three ladies attend a yoga class most “They make me happy and are good com- out in the community. “We were preparing mornings at a studio around the corner. For Walter Glasco, moving into Parkside pany,” she said. “They give me support.” them for the world,” Nunez said. “They Three others go to church together. “The Terrace ended his bout with homelessness. “This is what makes me happy. I love would have to be more responsible for support they give each other has made Through AHRC NYC’s employment pro- helping people,” Jimenez said. “When money management. It was a challenge, them safer and happier,” Teich said. gram, Glasco secured a job at the Staten someone is hurting, it hurts me too. She but we did it and the outcome was great.” Then came COVID-19, coinciding with Island Ferry in 2007. At times, he was so really, really missed them.” Beth Ann Silvestri, AHRC NYC Resi- the one-year anniversary of living inde- cash strapped he could not afford mass Mary, however, recently died. In her dential Coordinator, agreed. “I knew the pendently, a goal all the residents identi- transit. So, he walked nearly six miles to typical fashion, Jimenez suggested they women would not fail, but I didn’t know fied prior to moving in. the West Side ferry terminal from a 33rd consult a nearby pet shop about finding a their lives would be enriched so much Street shelter on the far East Side. While new partner for Tom. “That made her feel a with friendships, collaboration in com- A Major Milestone Amid the Pandemic sleeping in a train station, co-workers told little better,” Jimenez said. munity and general happiness,” she said. him it wasn’t safe to do that. “I didn’t want “Shortly after moving in, I asked Carmen The tenants marked their second anni- to go back to the shelter, but I didn’t have Exceeding Expectations how she was doing. She just smiled and versary at Parkside Terrace in March. Un- a choice,” Glasco recalled. After my last dangled her keys.” like the first year, there were new rituals to stay in the shelter system, my Care Manag- Elizabeth Aguiar, Manager of AHRC practice: Wash your hands as soon as you er told me ‘I’m going to get you in a good NYC’s Fordham Oval Plaza, is thrilled to An Unfamiliar Process come in the house, morning temperature home, your own home.’ I was overjoyed see the three former tenants - Nora, Christie checks and masks, said Jennifer Jimenez, when I found out I got selected.” Cuttito, and Carmen Rodriguez - doing so The process was not easy. It challenged AHRC NYC Residential Habilitation Glasco moved into his studio apartment at well. “Nora is doing great,” Elizabeth said. staff members across AHRC NYC to go Counselor. Parkside Terrace on March 24, 2019. “The “She calls us on a daily basis to let us know outside of their comfort zones. Being home and watching the news also neighbors are nice and I have a sense of pri- how she’s doing or to ask questions. We’re “A lot of times, unfortunately, we oper- posed some problems. Anxiety increased vacy,” he said. With AHRC NYC’s support, ate in our own little world and in our own and one tenant decided to self-quarantine Glasco is thriving in his home. “It means little bubbles,” Silvestri said, adding that because she didn’t want to risk catching a lot to have my own space now,” he said. other than Teich, no one understood the the virus. Jimenez took on the role of a “I’m learning something new every day.” complexities of applying for affordable mother - repeating herself constantly and housing. The one thing they learned was reminding people to wear their mask any- Creative Thinking Reunites they had to identify great applicants for time they left their apartment. “We had to Tenant with Birds housing. “Everybody brought their exper- be on top of them so they understood how tise to the table,” Silvestri said. serious it was,” Jimenez said. Jimenez began working with Nora Katz To support the tenant, who self-quaran- two weeks after she had moved into the “Never Doubt Yourself” tined, Jimenez and Blanca Ortiz, Home building. Katz, 65, had lived at AHRC Care Field Supervisor, explained to her NYC’s Fordham Oval Plaza in the Bronx Chevonna Fabre is working on passing that everyone needs to adjust. for more than 25 years and was ready to the written exam for her learner’s per- “If you quarantine too long, it will be move to her own apartment. mit with help from Jimenez. She also has difficult for you to get used to the new nor- Parkside, however, had a no pet rule, learned how to pay her bills electronically mal,” Jimenez said, recalling the conversa- forcing Katz to part with her three beloved from a check-cashing office. Fabre’s ad- tion. “You need to dip your toe into it.” The birds - Cuchi (a cockatiel) and Tom and vice to other individuals with I/DD: “Go conversation helped. Mary (parakeets.) “She was so heartbroken forth; you won’t be disappointed. Never The tenants, who already had formed without her birds,” Jimenez said. Her aunt doubt yourself. You can do all things.” strong friendships, would gather in the staff began looking after them. office off the building’s main entrance. The Jimenez started researching an idea. Nora Katz with one of her Lynn Uhlfelder Berman does Public/ office, which resembles a living room, be- Within two weeks, she submitted docu- Media Relations for AHRC New York City. came a gathering place to catch up with mentation to certify Cuchi, Tom and Mary support birds enjoys Dylan Watton is the Communications Co- one another or seek assistance. as support birds. Katz is thrilled to have living on her own ordinator for AHRC New York City. AUTISM SPECTRUM NEWS ~ SPRING 2021 www.AutismSpectrumNews.org PAGE 27

Accessory Dwelling Units Offer More Housing Options and Keep Loved Ones with Disabilities Close to Home

By Assemblyman Angelo Santabarbara that this concern is shared by other parents In the New York State Assembly I’ve Chair of the New York State thinking about their child’s future. proposed a bill that would allow homeown- Assembly’s Sub-Committee on Accessory Dwelling Units (ADUs) are ers to access an interest-free loan program Autism Spectrum Disorders living spaces that share a single-family for up to $50,000 or 50% of construction lot with a larger dwelling, mainly locat- costs to add an accessory unit of up to two ed within, attached to or detached from bedrooms to their home (A.1410 of 2020). oving out of a family home is the main residence, generally containing According to a 2018 study conducted often one of the biggest de- a kitchen, bathroom and bedroom. ADUs by AARP, 84% of families with a disabled cisions in a young person’s were very common before the increase of relative would consider building an ADU Mlife, representing a turn to- suburban single-family homes. to care for them.4 Unfortunately, cost is of- wards independence and a chance to cre- In recent years the demand for ADUs has ten a prohibiting factor, with average costs ate their own space in the world. While increased across the country among people ranging from $50,000 for an internal ADU this is a big step for any individual, it can of all ages and can be part of the solution to $150,000 for a detached ADU. They are be especially challenging for individuals here in New York State. ADUs could serve usually financed through a combination of with disabilities. These individuals and as independent housing for a family mem- savings, a second mortgage or a home eq- their families are tasked with not only ber with a developmental disability.3 This uity line of credit.5 This challenge calls for finding a home, but also securing caregiv- would allow disabled individuals to live on proposals to help cut down on these costs ers or other forms of support in the pro- the same property as their family members by offering an interest-free, potentially de- cess. Far too many people seeking sup- or caregiver, providing them with an easy ferred-payment loan for the construction of portive housing end up on a waiting list avenue for support and caregiving while an ADU. This would ease the financial bur- for months or even years due to limited still having their own independent spaces. den on families while also giving them an availability. This issue was further high- ADUs can also be an option for those incentive to look into different methods of lighted during the peak of the COVID-19 New York State Assemblyman who hope to remain in their homes as they care and support other than group homes. pandemic, when many individuals with Angelo Santabarbara age and want a different living arrange- The ADUs covered by the proposal I disabilities were forced to self-isolate but ment that allows them to stay in their com- have introduced could also be used as an still required support and assistance from they share a group home with other adults. munities. Many older New Yorkers also alternative to assisted living or nursing their families. Families of those living in community often live in homes without accessibility home options. For elderly adults diagnosed New York has one of the highest estimat- housing, however, have expressed concern needs. ADUs can be built with those needs with Alzheimer’s disease or other forms ed adult populations with autism spectrum with limited options for family caregivers in mind, allowing people to age in place of dementia, the physical and cognitive disorder (ASD) in the country at more than to provide the individualized support nec- with a family member or caregiver living changes associated with the disease require 340,000 individuals.1 Currently, the pri- essary to address their specific needs.2 As nearby with the opportunity to downsize to the eventual need for 24-hour supervision mary housing option for these individu- the father of a son who lives with ASD, a separate, more accessible home on their als is community-based housing in which this is deeply concerning, and I’m certain own property. see Dwelling on page 34

A COVID-19-Inspired Housing Solution for Our Autistic Daughter

By Marguerite Elisofon, BA as much as possible on her own. Author, Writer and Autism Consultant In the meantime, Samantha continues to live with us in the rental where she grew up. But after her twin brother moved to Los or many years I’ve been thinking Angeles in 2016, we started to think about about how and where our daugh- buying an apartment. We no longer needed ter Samantha (now 30) could live a third bedroom (though having a den was Findependently. She doesn’t belong nice). Crunching the numbers, my husband - nor does she want to be - in a group living figured that if we continued to rent our cur- situation and she is not yet ready to live rent Manhattan apartment, we’d probably on her own. After surviving 5 years of spend a million dollars over 10 years, or un- roommates at Landmark College and Pace til we could no longer afford it. Crazy right? University, it was clear that sharing a room If we waited until rising rents and (my with strangers would never be Samantha’s husband’s eventual retirement) forced us cup of tea. to leave our current apartment, we’d have “I’d rather live with a boyfriend who will nothing to show for that million dollars of one day be my husband,” she explained, as rent after 10 years. Worse still, our daugh- if her preference would magically yield ter would be left with no money and unable Prince Charming and a cozy apartment for to live anywhere in Manhattan. them to share. At the time, Samantha had So, what is the solution for our family? successfully managed a 3-year relationship Buying a co-op with all our names on the with an Aspie, living with him part-time in lease, so that when we are gone, Samantha a small studio, so her hope was not totally Howard, Samantha and Marguerite Elisofon in their living room can stay in the apartment and not have to unreasonable. pass the co-op board (which she could nev- My daughter’s dream is my dream. But mantha asked many times. I could not rely on “the system” or anyone er do on her own). how could we achieve it? Samantha re- “We can’t afford it,” was our oft-repeat- else. I knew I had to find an idea that would After looking for nearly two years at ceives SSDI and a small housing subsidy ed refrain. work for Samantha, who has yearned to be two-bedroom co-ops and condos which al- through her Self-Direction program. This Still, we needed a solution. I signed up independent from the time she was a pree- low co-purchasers, I became discouraged stipend is not enough (and probably never for housing lotteries, checked with Hous- mie infant in her crib struggling to turn her - until COVID-19 drove down prices. With will be) for living in Manhattan - the only ing Ambassadors and even joined a group head. When she was stuck face down and so many Manhattan families fleeing the community she has ever known, where all of parents whose goal was to find safe af- I gently nudged her cheek, Samantha im- city for second homes or purchasing homes of her friends reside. fordable apartments in Manhattan for our mediately turned in the opposite direction in areas where schools were open, real “Why can’t you buy me an apartment adult kids with or without support. None of and screamed in fury. Our daughter has al- like some of my friends’ parents did?” Sa- these possibilities came to fruition. Clearly, ways been uber-determined to accomplish see Solution on page 35 PAGE 28 www.AutismSpectrumNews.org AUTISM SPECTRUM NEWS ~ SPRING 2021

My Child with Autism Needs Anesthesia - What Should I Know?

By Sean P. Antosh, MD need for preoperative sedation. During the Pediatric Anesthesiologist preoperative phone call, it is important to Dayton Children’s Hospital identify the patient’s cognitive level, meth- ods of communication, interests, stressors/ triggers for maladaptive behavior, sensory hildren with autism spectrum challenges, as well as previous medical disorder (ASD) have an increased encounters and how they do with transi- rate of hospital contact and are tions. From this information, the team can Clikely to require sedation and modify the experience to best accommo- anesthesia for surgeries, procedures, and date the child’s needs and avoid potential imaging tests. Lee et al. has demonstrated triggers and warning signs of overload. that children with autism were about two As the child’s advocate, parents can be to three times more likely to experience an proactive in requesting sensory friendly injury that needs medical attention. These resources and a quieter environment. A hospital encounters create a stressful en- sensory-adapted environment can help to vironment for patients with autism due reduce anxiety and improve compliance to their need for a routine and inability to with medical situations. Many pediatric fa- adapt to a quickly changing environment. cilities have child life specialist who may Additionally, patients with autism are at help throughout the perioperative care. If an increased risk of adverse events oc- the facility does not typically take care of curring during hospitalizations. These ad- ASD patients, it is important to bring cop- verse events, as described by Taghizadeh ing and distraction objects. Additionally, and colleagues, are more likely to occur if it is helpful to discuss with staff how they there is a failure to consider a child’s rou- be overwhelmed due to the numerous new tient may visit while at the hospital, whom can better provide care for the patient. tine, special interest, sensory sensitivities, people they will meet, the new experiences they might meet and what might happen. During the preoperative phone call, it is and level of understanding. Preparation, of sights and sounds, and the inability to These social stories can be tailored with important to discuss if there is a flexible understanding, and knowledge by the pa- verbally communicate. Therefore, it is im- specifics by the facility that will be taking admission process. For example, is priority tient, parents, and care staff helps facili- portant to prepare early for the encounter. care of the child. timing given to ASD patients, so they do not tate a smooth transition and ultimately a In his article entitled “In the Doctor’s Of- Another valuable preparation step is the have to wait all day for their surgery or pro- beneficial outcome. fice: A Parent Perspective,” Mills discusses development of an individualized coping cedure? Is it possible to decrease the wait how social stories can help facilitate a suc- plan. Swartz and colleagues have shown time prior to the start of surgery? Can other Preparation for Anesthesia cessful experience by decreasing surprises an individualized plan is helpful in the imaging studies, lab work, and/or tests be through visual desensitization. The stories perioperative management of children accomplished during the same anesthetic? Surgery is a stressful time for any patient, often include simple, reassuring descrip- with ASD and that knowledge of the sever- but especially those with ASD as they may tions and photos of different places the pa- ity level may be helpful in determining the see Anesthesia on page 37

Compassionate Care from page 25 A possible first step is to generally work 3. Actively avoids failure and sees difficult sis and works as a clinical supervisor for on improving our own perspective taking clients as a manageable challenge (gen- Graham Behavior Services in New Jersey. of information gathered, and improved skills. It may be helpful to use elements uinely wants their clients to succeed) Ashley has worked primarily with children clinical outcomes (Taylor et al., 2018). of Acceptance and Commitment Therapy and adolescents with various diagnoses in As most of us know, parent involvement (ACT) and mindfulness to achieve this. 4. Has a sense of humor the school, home, and residential settings is an important part of clinical treatment These therapeutic strategies often focus throughout her career in ABA. She has for children with developmental delays. on acceptance, values, and awareness in 5. Is optimistic and sees behavior change always been passionate about working Our ability to practice compassionate care the moment. They can also help to work in a “glass half-full” context with individuals with special needs and is could greatly improve parents’ adherence through being presented with aversive thankful to have made a career out of it. to treatment plans and participation in par- stimuli such as an emotional parent. 6. Is thick-skinned: doesn’t take negative ent training. Another way to begin practicing these client actions towards themself person- References It is also important to remember that skills should be to focus heavily on the in- ally; maintains objectivity and positivity our ethics code speaks to the importance dividuality of each of your clients. To look Callahan, K., Foxx, R. M., Swierczynski, of client and caregiver relationships, clear at behavior analysis as a set of principles 7. Is “self-actualized”: does whatever is A., Aerts, X., Mehta, S., McComb, M., . communication, and client preference. A rather than a manualized protocol. In a re- necessary (creativity) and appropriate . . Sharma, R. (2019). Behavioral artistry: behavior analyst practicing with compas- cent article, Callahan et al. (2019) drew a to facilitate and produce positive be- Examining the relationship between the sionate care will likely be more successful comparison between “traditional behavior havior change interpersonal skills and effective prac- at adhering closely to those ethical codes. techs or analysts” versus what Foxx orig- tice repertoires of applied behavior anal- Lastly, working to practice compassion- inally coined as “behavioral artists.” Be- Although it would of course be best if ysis practitioners. Journal of Autism and ate care can also potentially improve the havioral artists have a set of interperson- all of these skills came “naturally” to each Developmental Disorders, 49(9), 3557- overall job satisfaction and happiness of al skills that make them more effective at of us in the field, it does not mean that 3570. https://doi.org/10.1007/s10803-019- behavior analysts. Even though as behavior their job and they generally provide a be- these skills cannot be acquired over time. 04082-1 analysts we often don’t like to talk about havior analytic treatment that looks more We should all focus on changing our own feelings, we cannot discount their relevance televisable. The treatment being televisible behaviors in the target direction of these LeBlanc, L.A., Taylor, B.A. & Marchese, to everyday life. Decreasing our stress and refers to a level of safety, respect, and rap- characteristics. Making our own behavior N.V. (2019). The Training Experiences of improving happiness within the context of port between the clinician and the client changes will benefit our clients as well as Behavior Analysts: Compassionate Care our jobs can make us more effective prac- and their family. This type of treatment our own well-being and satisfaction as a and Therapeutic Relationships with Care- titioners, as no one functions at their best could be viewed by anyone and anytime behavior analytic practitioner. It will cer- givers. Behavior Analysis in Practice, when they are unhappy and stressed. with positive feedback, such as, “That tainly take practice, but we all know that 13(2), 387–393. https://doi.org./10.1007/ looks like something I would want for my behavior change is possible with the right s40617-019-00368-z How Do We Put child.” The article lists seven characteris- strategies put into place. Compassionate Care Into Practice? tics that represent a behavioral artist: Ashley Kemmerer, MS, BCBA, Clin- Taylor, B. A., LeBlanc, L. A., & Nosik, M. ical Supervisor at Graham Behavioral R. (2018). Compassionate care in behavior Currently, most behavior analytic train- 1. Likes people and is good at establishing Services, has been working in the field of analytic treatment: Can outcomes be en- ing programs do not focus on teaching rapport ABA for more than 10 years and has been hanced by attending to relationships with compassionate care skills. As long as that a board-certified behavior analyst (BCBA) caregivers? Behavior Analysis in Practice, continues to be true, those of us in the field 2. Has “perceptive sensitivity” and attends for the last 8 years. She is currently pur- 12(3), 654-666. https://doi.org/10.1007/ need to work on these skills on our own. to very subtle changes in their client suing a PhD in applied behavior analy- s40617-018-00289-3 AUTISM SPECTRUM NEWS ~ SPRING 2021 www.AutismSpectrumNews.org PAGE 29

A Parent Advocate’s Hard-Fought Journey

By Dr. Renee Kasinsky tified at a hearing in the Massachusetts Parent Advocate State House, citing my son’s experience. In this lobbying experience, I witnessed how the power of advocating together with hroughout Daniel’s life I have those with similar interests can reverse advocated for my intellectual- power dynamics. A decade later, parent ly challenged son on the autis- lobbying helped pass the legislative Au- Ttic spectrum. My journey began tism Omnibus law in August of 2014. It early in Daniel’s life, as the parent of an expanded the Department of Developmen- adopted infant from Peru. I have learned tal Services (DDS) eligibility criteria for throughout Daniel’s life that advocacy is individuals with autism and those on the an art that requires flexibility, networking autistic spectrum. My participation in these and at times outright doggedness. During hearings inspired me to seek change within my journey I always understood the impor- my Cambridge SPED system. tance of passion, confidence, and a larger In Daniel’s second grade I became the vision based on Daniel’s special abilities. local Parent Advisory Council (PAC) par- But I also had much to learn to become in- ent Co-Chair for Special Education. It gave formed and effective. Advocacy requires me a network of parents experiencing sim- learning how the system works and taking ilar problems with their children. I became advantage of all the avenues within it to acquainted with various parent advocacy advance your child’s well-being as well as groups, including the Massachusetts Fed- to create system change. Successful advo- eration for Special Needs. The Federation cacy requires a multi-pronged approach Dani and Renee marching for Peace in Cambridge, MA offered a parent training on state special using strategies both inside and outside of education regulations. Armed with train- the system. Daniel’s school age years re- was in the first grade. He was struggling ceived reading practice before school with ing, I began advocating for other students. quired using different strategies than as a learning to read. Daniel’s IEP team was his classroom teacher as well as additional I consulted a seasoned advocate, a found- young adult faced with less available re- unwilling to provide him with additional extended summertime services. This early er of Ch. 766 and the Federation, who in- sources. Step by step, evaluating my op- reading help. I went to the state Bureau of success spurred me on to further advocacy. formed me how to evaluate the Cambridge tions and networking with others, I “kept Special Education Appeals, representing In 1997, the Massachusetts state special SPED programs using the federal Depart- on keeping on” until I reached successful Daniel without a lawyer. I was told that education standard, “maximum feasible ment of Education. Her contact initiated a outcomes for my son. Follow along with the odds for parents winning were almost benefit” (Ch. 766) was under attack, sub- federal Review finding more than twenty me on my long and twisted journey as a nonexistent. Undeterred, I used the Hearing stituting the more limited federal standard major noncompliance issues throughout parent advocate. Officer of this appeal as my resource to in- of “free and appropriate public education.” Cambridge schools. How special education My initiation into the world of special form and assist me with the process. The Together with hundreds of other advocates, education advocacy began when Daniel officer made a favorable finding. Daniel re- educators, and special needs parents, I tes- see Parent Advocate on page 34

Community Living in the Era of COVID-19

By Nicole LeBlanc es like this are needed because it is now from the American Medical Association, Disability Rights Activist more important than ever that we get seri- 81% of Primary Care Doctors are provid- Human Services Research Institute (HSRI) ous about addressing health disparities in ing fewer in-person visits during COVID. people with developmental disabilities and Delaying preventive care can backfire in moving away from one-size-fits-all models the long term. We know that by putting s we cope with the disruption of of medicine and service delivery. I say this off cancer screenings and immunizations this pandemic, many of us are because people with disabilities have some against deadly diseases we risk long-term wondering what our new nor- of the highest death rates and risk for poor consequences to public health outcomes. Amal will look like on the other outcomes if they catch COVID-19. Home visits will go a long way toward help- side. Before COVID-19, many people with The future is flexibility; the days of a ing people with chronic health problems, disabilities went to day programs or had one-size-fits-all way of providing services sensory issues, and transportation chal- individualized 1:1 staff supporting them are over. A one-size-fits-all service or liv- lenges to access healthcare in a safe way. at work or in activities in the community. ing model is bad policy because it can have In a recent survey, “92% of adults say care Now, because of COVID-19, we are all be- a negative impact on our health and qual- at home is equal to or better than facili- ing forced to see and make connections to ity-of-life outcomes. A one-size-fits-all ty-based care.” the community in a mostly virtual way. system is also not very accommodating in While this change is especially import- In the face of COVID-19 our society was meeting our unique needs. And COVID-19 ant during the pandemic, in a non-pandem- forced to make drastic changes in how we has proven once again that living in seg- ic world these changes are also beneficial, live our day-to-day lives. Some of these regated settings is hazardous to our health given the many access barriers people with changes, like moving our work, school- and survival. disabilities and other populations face in ing, doctor’s appointments, and events to Finally, we must use the lessons learned receiving needed services. a 100% virtual format, busted long-held Nicole LeBlanc from this pandemic to transform our sys- myths and made services and the work tem to focus more on preventive care. As Online Services world more accessible to people with dis- port and accommodations we need to thrive a society, we need to move away from the abilities. But we still have a lot of work and grow. We must embrace a new normal model of “wait for disease and then rush During the COVID era, everyone has ahead to maintain and grow the progress that accommodates and plans for life with a in to treat it.” Shifting to home visits will had to adjust what community means to made in the area of accessibility. Espe- disability or chronic health issue. allow people with disabilities and other them. People’s community lives are hap- cially as we move from a pandemic to a vulnerable populations to receive preven- pening online, including their shopping, post-pandemic world. Healthcare and Access tive care and disease management without banking, working, schooling, doctor visits, Going back to the old way of doing having to worry about the risk of catching and social gatherings. Today’s community business is not acceptable to the disability In a pandemic world, one thing that would COVID-19 when traveling to a doctor’s living requires equal access to technology. community because the old normal did not greatly benefit people with disabilities, se- office. House calls could also help inde- But many of us face challenges with this. work for many of us who were denied basic niors, and others is a return of doctors and pendent doctors stay in business given that Many of us live off of SSI or SSDI and accommodations in our day-to-day lives. nurses doing house calls and a growth of many private doctors have reduced services Many of us were denied access to the sup- hospital-at-home programs. Policy chang- during this pandemic; according to a report see COVID-19 on page 36 PAGE 30 www.AutismSpectrumNews.org AUTISM SPECTRUM NEWS ~ SPRING 2021

Teaching from page 13 vide the greatest level of independence possible. within school and in-home support pro- Todd Merritt, PhD, BCBA-D, LBA-NY is grams where teaching is delivered in a Director of Behavioral Services and Jessi- systematic way. This type of instruction ca Basir, MS, BCBA, LBA-NY, CT is a Be- typically occurs in a controlled environ- havior Intervention Specialist at The Arc ment (e.g., classroom) and is most often Westchester, the largest agency in West- used when a person is first learning a skill. chester County, NY, supporting individuals An example of formal instruction may in- with developmental disabilities, including volve working with a person on the skills those on the autism spectrum, and their required to maintain a conversation. The families. For more information, visit www. prepared lesson will focus on specific so- ArcWestchester.org. cial skills and may use a script or hypothet- ical examples. References While formal teaching is a crucial aspect of skill acquisition, instruction should not Cooper, J. O., Heron, T. E., & Heward, be limited to only formal opportunities. It W. L. (2007). Applied behavior analysis. is vital to use naturally occurring situations Upper Saddle River, NJ: Pearson Merrill and events to reinforce skill acquisition in Prentice Hall. the person’s everyday life. Naturalistic or Todd Merritt, PhD, BCBA-D Jessica Basir, MS, BCBA incidental teaching takes place in the per- Developmental Disabilities Assistance and son’s everyday environment by using natu- program for progress monitoring. Mastery to best help a person achieve this goal. It is Bill of Rights Act of 2000, 42 U.S.C. § 15001 rally occurring teaching opportunities that criterion refers to the level of indepen- important that the individual and the nat- et seq. (2000). www.congress.gov/106/ occur throughout the day. An example of dence at which the team would consider ural supports available to the person play plaws/publ402/PLAW-106publ402.pdf naturalistic teaching may include a mon- the skill to be learned (Cooper, Heron and an active role in both the development ey management lesson while a person is Heward, 2007). This criterion is estab- and implementation of supports. Although DiGennaro Reed, F. D., Strouse, M. C., at the mall with a caregiver. If the person lished based on the individual needs of this independent living goal may not be Jenkins, S. R., Price, J., Henley, A. J., & expresses interest in purchasing new shoes, the learner and it is important to note that realized by all, there are approximations Hirst, J. M. (2014). https://doi.org/10.1007/ naturalistic teaching would involve the not every learner will define success or of independent living that allow for the s40617-014-0011-6 caregiver using this opportunity to provide independence in the same way. The team supports and services to be tailored to best meaningful instruction towards enhancing should take a person-centered approach meet the needs of the individual. Individu- Home and Community Based Services, 42 the person’s skills so they are better able to and base the mastery criterion on the per- als with I/DD may live with their natural/ C.F.R. Parts 430, 431, 435, 436, 440, 441, complete the transaction independently in son’s goals and abilities. Progress mon- biological families and receive supple- and 447 (2014). www.govinfo.gov/content/ the future. itoring involves periodically assessing a mental supports to enhance their indepen- pkg/FR-2014-01-16/pdf/2014-00487.pdf When planning for formal or naturalistic previously mastered skill and determining dence, supervised community programs instruction, the team must simultaneous- if the person demonstrates the same level with 24/7 staffing supports, supported Individuals with Disabilities Education ly plan for generalization across various of mastery over time. Consistently mon- living arrangements with various levels Act, 20 U.S.C. § 1400 (2004). https:// settings, people, and situations over time itoring for success, even after skills have of staffing supports, or independently uscode.house.gov/view.xhtml?path=/pre- (Cooper, Heron, and Heward, 2007). The been mastered, ensures that lapses in ac- and receive minimal supports elsewhere. lim@title20/chapter33&edition=prelim goal of generalization is to ensure that the quisition or generalization can be identi- A person may demonstrate greater in- learner will be successful with perform- fied and addressed. dependence towards independent living Partington, J. W., & Mueller, M. M. (2012). ing these skills independently when faced Independent living may be considered when supports and services are focused on The Assessment of Functional Living Skills. with novel situations in the future. Because the ultimate goal for people with I/DD skill acquisition. As the needs of a person Marietta, GA: Stimulus Publications. there are many variables in the community, and the team must continue to keep this change throughout their lifetime, the paid planning for generalization is critical. goal in mind when designing supports and and natural supports that are available to Rehabilitation Act, 29 U.S.C. § 701 et seq. The last step in the instructional plan- services. Through a person-centered plan- them should be customized through the (1973). https://dhs.sd.gov/drs/Section%20 ning phase is to set mastery criterion and ning approach, the team can identify how person-centered planning process to pro- 7%20Rehab%20Act%202014.pdf

Inclusion from page 14 Fisher, K. R., & Purcal, C. (2017). Policies to change attitudes to people with disabil- & Purcal, 2017). Organizations have tre- ities. Scandinavian Journal of Disability mendous influence over the attitudes and Research, 19(2), 161–174. https://doi.org/ beliefs of their communities. For example, 10.1080/15017419.2016.1222303 businesses have the power to influence in- clusion on a massive scale through a va- Hassiotis, A. (2020). The Intersectionality riety of strategies. They include inclusive of Ethnicity/race and Intellectual and De- hiring practices, issuing public statements velopmental Disabilities: Impact on Health about inclusive hiring, partnering with dis- Profiles, Service Access and Mortality. ability service organizations for public ser- Journal of Mental Health Research in Intel- vice announcements, and including people lectual Disabilities, 13(3), 171–173. https:// with ASD as stakeholders in decision-mak- doi.org/10.1080/19315864.2020.1790702 ing. These efforts increase the personal contact of employees and customers with Merrells, J., Buchanan, A., & Waters, R. individuals with ASD, further reducing (2017). The experience of social inclusion stigma through the development of rela- for people with intellectual disability within tionships between people with and without community recreational programs: A system- ASD. Organizations make decisions about atic review. Journal of Intellectual & Devel- who to include and empower every day. opmental Disability, 43(4), 381–391. https:// Are businesses, faith and community John Bryson, MS Ed, CESP Brad Walker doi.org/10.3109/13668250.2017.1283684 organizations, social groups, educational institutions, and government agencies cre- with disabilities. Choose to listen and learn by e-mail at [email protected]. Risley, T. R. (1996). Get a life! In L. K. ating opportunities for people with ASD to from them. Embrace the feeling of discom- NEXT for AUTISM can be found on the Koegel Jr., R. L. Koegel, & G. Dunlap, contribute? These are essential questions fort that comes with change. Use the experi- web at www.nextforautism.org. Positive behavioral support (pp. 425-437). not asked often enough. Leaders in these ence to advocate for inclusion. Inspire others Baltimore: Paul H. Brookes. organizations can learn about the benefits to be the change you want to see in the world. References of inclusion, through full representation Slater, P., McConkey, R., Smith, A., Du- from the community, including people with John Bryson, MS Ed, CESP, is Senior Botha, M., & Frost, D. M. (2018). Ex- bois, L., & Shellard, A. (2020). Public ASD. Listening to and empowering people Manager, Corporate Consulting, and Brad tending the Minority Stress Model to Un- attitudes to the rights and community in- with ASD is a choice (Risley, 1996). Walker is Vice President, Community Liv- derstand Mental Health Problems Experi- clusion of people with intellectual disabil- The most important thing anyone can do ing Supports at NEXT for AUTISM. Con- enced by the Autistic Population. Society ities: A transnational study. Research in to create inclusive communities is to have tact John Bryson by e-mail at jbryson@ and Mental Health, 10(1), 20–34. https:// Developmental Disabilities, 105, 103754. friendships and relationships with people nextforautism.org. Contact Brad Walker doi.org/10.1177/2156869318804297 https://doi.org/10.1016/j.ridd.2020.103754 AUTISM SPECTRUM NEWS ~ SPRING 2021 www.AutismSpectrumNews.org PAGE 31

“Infinite Solution Finders:” AHRC New York City’s Educational Advocacy Guides Parents of Students with Disabilities

By Dylan Watton Adrian had found some success at the the main points that we needed to discuss. Communications Coordinator first schools he attended. Over time, how- We were going to have an IEP, and to re- AHRC New York City ever, his mother felt that he was beginning quest change of placement we needed to to stagnate and not receiving the instruc- have new evaluations,” she recalled. Hoy tion he needed to achieve his goals. guided her through the additional steps of osemeri Linares embraced the “I know how well Adrian can do if he drafting letters, scheduling meetings, and challenges and the need for has everything in place he needs to suc- making the appropriate contacts in a timely knowledge when she found out ceed. He is a visual learner and needs a lot fashion. her son Adrian was on the spec- of visual supports in place. The school just “We are infinite solution finders,” Hoy Rtrum. “Adrian was diagnosed with autism wasn’t meeting any of those needs. They said. “I can’t guarantee I will find some- a little before he turned two. I had to quick- weren’t tailoring to the needs of a child thing, but I can promise I will not abandon ly learn all the things that come with hav- with autism - the kids have other disabili- you. We can prepare as much as possible ing a child with a disability,” she recalled. ties and they are all grouped together.” and go from there. That is something that “I had no idea prior to getting the diagnosis “From age 3-21, a child’s primary service families really value.” all the things that come with that - eval- location is school. It’s so critical to get their Adrian is now attending Learning Spring, uations, doctors’ visits, IEP meetings. You services right as soon as possible,” Hoy said. a school specifically for children on spec- must get familiar with them immediately.” trum. “He is doing amazing,” his mother Navigating the breadth of disability ser- Many Facets to Advocacy beamed. “He will be starting hybrid sessions vices, especially in the school system, can soon, but even with remote I hear him talking be overwhelming for any parent or guard- Linares was introduced to AHRC NYC’s and all the teachers are all so wonderful. ian. Katherine (Kate) Hoy, LMSW, AHRC Katherine ‘Kate’ Hoy, Educational Advocacy through the previ- It’s a different feel. He loves the school.” New York City’s Director of Advocacy ous director, Paul Hutchinson, in 2016. She “I would recommend AHRC NYC’s Services, knows this fact well and has ded- Director of AHRC New York needed guidance on Adrian’s entry into the advocacy, because you need someone icated her career to helping families find City’s Advocacy Services school system for students with disabilities. that gets everything going on right now. I the quality supports to which they are le- “That was a key point, getting Adrian would not be able to know this informa- gally entitled. meetings,” Hoy explained. that non-public school placement,” she tion on my own. Get someone to help you “Parents are by law equal members but said. “Paul sent me places I can go to. He navigate through this. You don’t want to do Educational Advocacy too often, on purpose or inadvertently, they referred me to where they were doing a this alone.” are not fully informed participants. We see study for autism, and Adrian got a thor- “We provide one-on-one support for that when they are not able to participate ough, extensive evaluation, and got that for New Advocacy Cases – Please call our parents and professionals to help them un- fully, communication breaks down and ul- free. I thank Paul a lot for that.” Advocacy Services Hotline: 212-780-2799 derstand their rights in special education in timately it impacts the child. We’ve seen In summer 2020, Linares reached out to or email us at Educational.Advocacy@ NYC, and to help them participate mean- outcomes improve exponentially when AHRC NYC again. “I filled Kate in on my ahrcnyc.org. Dylan Watton is the Communi- ingfully and effectively in their child’s IEP parents know their rights and act on them.” concerns. She went over with me some of cations Coordinator at AHRC New York City.

Suitable Housing and Community Living: Autistics Face Many Unusual Challenges

By Karl Wittig, PE living skills of the individual. Those hav- daily living, social skills, and other basic Advisory Board Chair ing adequate skills can certainly be placed areas of life are concerned. These deficits Aspies For Social Success (AFSS) in conventional housing and may require need to be immediately recognized and ac- little assistance. If they are gainfully em- commodated or remedied when present. ployed, they should be able to live in any Also, many autistics famously have reg- hether they can live inde- residence that they can afford and have the ular routines that they insist on adhering pendently or require assis- skills to maintain. Otherwise, subsidized to, strong preferences concerning personal tance and support, autistics housing or other benefits need to be made items (such as clothing, in my case), a va- Wneed resources to live in available to provide adequate accommo- riety of sensory sensitivities (e.g., selective communities, of which they often want to dations. For such individuals, any deficits eating issues, as with me), along with very be a meaningful part. First and foremost, in daily living skills need to be remedied intense special interests and strongly pre- adequate housing must be made available. using whatever instruction or therapy is in- ferred activities. All these considerations Even for those who can live independently dicated. It has always been my belief that need to be respected and accommodated to and find and maintain employment, or re- many autistics are more capable of such whatever extent possible. This is in contrast ceive suitable benefits and subsidies, basic than is generally recognized, and greater with many assisted living facilities, such as supports may nevertheless be indicated. efforts are needed to improve these skills those for senior citizens, which cater large- Those who require assisted living will, at as much as possible. Also, assistance with ly to more typical or common challenges some point, need to be placed in appro- finding housing, which can involve the and preferences, as well as more popular priate facilities that can provide whatever search for rental apartments or dealing recreational activities. Many autistics, for supports are necessary. In either case, they with real estate agents, may be appropriate. whom these often vary widely from typi- will be living in larger communities that For those who are unable to live inde- cal norms, are anything but well-served by may consist of other autistics, individuals pendently, some form of assisted housing such practices. with various disabilities, or perhaps be Karl Wittig, PE is needed. Once again, this can vary widely More significantly, waiting lists for such neurodiverse. As such, they must be pre- depending on the challenges and circum- housing are typically quite long, with peri- pared and receive adequate support for populations, and which affect their ability stances of the individual. Whether these ac- ods of ten years not being uncommon. Giv- the challenges most autistics face where to live independently and become part of commodations are exclusively for autistics en the dramatic rise in autism rates among interactions with others are concerned. the surrounding community. or serve a broader population, the atypical the general population over the past two Those providing assistive and support ser- needs of autistic individuals must be fully decades, the number of residential units vices need to understand these and other Housing Accommodations understood by those providing assistive ser- available for autistics needs to be great- challenges, and generally be equipped to vices and met to the greatest extent possible. ly increased. Once again, assistance with help autistics with their unusual needs. Housing accommodations for autistics For example, autistics often have significant finding the most appropriate and suitable Autistics often have deficits and face dif- can vary widely and depend greatly on the difficulties that otherwise comparable indi- ficulties that are far less common in other level of self-sufficiency and independent viduals rarely if ever have, especially where see Challenges on page 38 PAGE 32 www.AutismSpectrumNews.org AUTISM SPECTRUM NEWS ~ SPRING 2021

Outcomes from page 24 ing if natural and technological supports References are orchestrated. Keeley will benefit from an IEP that ad- Alvares, G.A., Bebbington, K., Cleary, dresses independent living skills while con- Parents as Participatory D., Evans, K., Glasson, E.J. (2020). The sidering programs she likely qualifies for Change Agents misnomer of ‘high functioning autism’: in adulthood. Intelligence is an imprecise predictor of Parents are a constant in a child’s life functional abilities at diagnosis. Autism, Explore Programs and Services and therefore better understand the capa- 24(1), 221-232. http://journals.sagepub. bilities and strengths their child has. Paren- com/doi/10.1177/1362361319852831 Housing Support - Many people with dis- tal involvement is vital to their child’s suc- abilities live with family, in group settings, cess and post-secondary out-comes despite Braddock, D.L., Hemp, R.E., Tanis, E.S., Wu, foster families, institutional settings, and a potential lack of educational expertise J. & Haffer, L. (2017). The State of the States in their own dwelling (Westling & Kelley, (Hsiao, 2018). Parents can also advocate in Intellectual and Developmental Disabilities: 2020). However, factors such as afford- in communities by serving as committee 2017. Boulder, CO: University of Colorado, ability, perceived safety concerns, and members, joining a local organization for Coleman Institute for Cognitive Disabilities. available supports narrow options. The advocacy, and participate in community Residential Information Systems Proj- meetings. Flowers, C., Test, D.W., Povenmire-Kirk, ect (RISP) reports that about 60% of re- Keeley and her parents can advocate T.C., Diegelmann, K.M., Bunch-Crump, spondents that receive Long-term Support during IEP meetings and join local organi- K.R., Kemp-Inman, A., Goodnight, C.I. A Services (LTSS) live with family with an zations that bring awareness on the barri- demonstration model of interagency collabo- increasing trend of moving from segregat- ers for adults with disabilities. ration for students with disabilities: A multi- ed settings to community-based settings. Celeste Lenae Michaud, MA level approach. The Journal of Special Educa- The survey further supports a trend of in- Conclusion tion, 51(4), 211-221. http://journals.sagepub. creasing number of adults with disabilities Individual Supports - Home and Commu- com/doi/10.1177/0022466917720764 living with family (Larson, 2020). With nity-Based Service (HCBS) waivers are For many adults with disabilities, living approximately 1.3 million individuals designed to provide LTSS for those qual- independently is possible with the right Hsiao, Y., Higgins, K. (2018). Parent with Intellectual and/or Developmental ified in the community. Every state has resources. Despite the obstacles, families Empowerment: Respecting their voic- disabilities (I/DD) residing with parents its own criteria and number of individu- and self-advocates are encouraged to plan es. TEACHING Exceptional children, 60 years of age or older (Braddock et al., als served at a time and many states have ahead and explore programing before it is 51(1), 43-53. http://journals.sagepub.com/ 2017), parents must plan for independent waitlists. It is suggested that parents begin needed. Skill building and being intention- doi/10.1177/0040059918790240 living for their child beyond their lifetime. the application process early as the wait al on the plans about life beyond second- The Department of Housing and Urban can be 10 years or more. Applicants who ary school becomes vital, as support is no Larson, S.A., Eschenbacher, H.J., Taylor, Development (HUD) have multiple pro- have assessed cognitive disabilities tend longer based on entitlement, but on qualifi- B., Pettingell, S., Sowers, M., & Bourne, grams to support supply and demand of to qualify for HCBS waivers (Westling & cation. A parent that plans ahead, explores M.L. (2020). In-home and residential long- affordable, sustainable housing for those Kelley, 2020). available resources, and advocates is a par- term supports and services for persons with with low incomes. One such program is Supports without a waiver include ent that brings about the best opportunity intellectual or developmental disabilities: the Housing Choice Voucher which allows natural and technology-based supports for positive outcomes. Status and trends through 2017. Minneapo- a choice of any dwelling that meets the (Westling & Kelley, 2020). Natural sup- lis: University of Minnesota, Research and voucher requirements. Local public hous- ports utilize people within the typical net- Additional Resource Training Center on Community Living, In- ing agencies are responsible for paying a work of interactions experienced in daily stitute on Community Integration. subsidy to the property manager on behalf life such as neighbors and co-workers; www.simply-home.com - An organization of the qualified applicant (Westling & Kel- Technology can be used to encourage in- focused on utilizing technology to support Westling, D.L., Kelley, K.R. (2020). Oppor- ley, 2020). dependence without relying on a person independence. tunities for persons with IDD to live in their Keeley is a good candidate for the (Westling & Kelley, 2020). Parents and own homes. Education and Training in Au- voucher program if she is within the finan- self-advocates can collaborate with organi- Celeste Lenae Michaud, MA, is currently tism and Developmental disabilities, 55(4), cial qualifications. She will need supports zations to develop an individualized tech- a PhD student in the Leaders for Transi- 367-381. https://search.proquest.com/schol- from a different source as HUD programs nological support plan. tion program at the University of Arkan- arly-journals/increasing-opportunities-per- are not specifically designed for people Keeley does not qualify for an HCBS sas-Fayetteville. To contact author, email sons-with-idd-live/docview/2463173613/ with autism or I/DD. waiver but could reside in her own dwell- Celeste at [email protected]. se-2?accountid=8361

Preparing from page 10 ASD more opportunities for learning, aid- In essence, the key to a successful, qual- Prevalence and correlates of postsecond- ing in transitional and independent living ity life as an adult begins as a child. Many ary residential status among young adults ensures that a child is getting the further down the road. factors come into play when developing an with an autism spectrum disorder. Autism, well-rounded preparation they need for The most effective way practitioners can ABA treatment program at a young age, 18(5), 562-570. years beyond childhood service availabil- assist parents and caregivers in acquiring however, the continuous strive for inde- ity. Targeting community living compe- these skills is by training using Behavior pendence across all skills is imperative. Key findings: Cdc releases first estimates tence early throughout ABA intervention Skills Training (BST). A study conducted Creating a well-rounded program that in- of the number of adults living with autism programming in the most natural setting by Lavie and Sturmey (2002) noted the ef- cludes a variety of skills throughout the spectrum disorder in the United States. possible could promote successful long- fectiveness of behavior skills training on individual’s treatment can increase pro- (2020, April 27). Retrieved February 17, term outcomes for the individual into rapidly teaching non-behavior specialists ficiency and ensure that the fundamental 2021, from https://www.cdc.gov/ncbddd/ adulthood. aspects of ABA. This approach provides skills are acquired early on. autism/features/adults-living-with-au- One component of early services that opportunities for parents to demonstrate tism-spectrum-disorder.html is sometimes overlooked, although essen- basic skills through rationale, modeling, Samantha Smith, MS Ed, BCBA, LBS- tial, is parent and caregiver training. Par- rehearsal, and feedback. If parents are PA, is Clinical Supervisor, Rebecca Mill- Lavie, T. & Sturmey, P. (2002). Training ents and caregivers play a key role in the equipped with the fundamentals early on er, MS, RBT, is a Registered Behavior staff to conduct a paired-stimulus prefer- treatment of their child for their entire life, (e.g., reinforcement, antecedent manage- Technician, and Julia Robertson, MS Ed, ence assessment. Journal of Applied Be- long after intensive childhood services. ment, extinction, function-based treat- QASP-S, RBT, is a Registered Behavior havior Analysis. 35(3), 209-211. Therefore, practitioners need to effective- ments) then the skills the learners acquire Technician and Social Media Coordinator ly equip parents with the knowledge and can be practiced with fidelity more consis- at Exceptional Learning, A First Children McGreevy, P., Fry, T., & Cornwall, C. fundamental skills necessary to successful- tently over time. More intensive teaching Company. For further information please (2014). Essential for Living: A communica- ly implement Applied Behavior Analysis and practice will ultimately award them a contact Dr. Jeff Selman, VP Clinical Ser- tion, behavior and functional skills assess- (ABA) interventions. Given that the num- greater chance that crucial skills will gen- vices of First Children Services at jsel- ment, curriculum and teaching manual for ber of individuals diagnosed with ASD eralize to new environments and people. [email protected] or visit children and adults with moderate-to-se- has risen since the 1990’s, leading to more This generalization or carry over of skills www.firstchildrenservices.com. vere disabilities. Winter Park, FL: Patrick adults in need of services, it is now more needs to occur early for individuals living McGreevy, Ph. D., P.A. critical than ever that parents are educated with ASD so that when they reach late ad- References on the basics from the start (Anderson et olescence and early adulthood, they can Partington, J. W. (2012). The assessment al., 2014). Giving parents the skill set they lead more meaningful and independent Anderson, K. A., Shattuck, P. T., Cooper, of functional living skills. Marietta, GA: need early on will provide individuals with lives. B. P., Roux, A. M., & Wagner, M. (2014). Stimulus Publications. AUTISM SPECTRUM NEWS ~ SPRING 2021 www.AutismSpectrumNews.org PAGE 33

Smart Home Technology and Autism

By Holly Mero knife drawers, medicine cabinets or closets Director where you store cleaning supplies. Vivint Gives Back Monitor in-home therapy session and tutors - If your child receives in-home ood parents worry about their therapy, a camera is a great way to monitor children’s safety. For most, activity during sessions. By observing ses- this centers on keeping tod- sions via camera, you can also learn from Gdlers away from medicine, therapists without distracting your child or sharp objects, electrical outlets and oth- disrupting the session. er physical dangers in the home. As chil- dren grow, parents can usually start wor- Learn how to better support your child - rying less about these things and focus Viewing camera footage also provides on their children’s social and economic a clear picture of how your child is pro- welfare. gressing. While a child may be perform- But not parents of children with autism. ing well during treatment, those behaviors They also grow concerned about their don’t always stick. Being able to see what child’s social and economic welfare, but your child is accomplishing in session is most likely don’t have the luxury of wor- empowering and informs your own in- rying any less about the physical dangers teractions with your child. You can make their child faces at home. requests and reinforce what your child is Regardless of their child’s age, these learning in therapy knowing what they’re parents still sleep with one eye open for Smart Home Technology and Autism in a bedroom, you can keep an eye on your capable of. fear that they may slip out of bed and find child even at night by watching live video a kitchen knife at 2 a.m. They still leap Here are several ways smart home tech- on your mobile device. This is especially Manage the people coming and going - to their feet with every creek of the floor, nology can help: helpful for a child who also suffers from With in-home treatment therapists, tutors worried that their child is wandering out seizures or other medical conditions. Cam- and caregivers coming in and out of your the front door. They still can’t leave their Keep track of your child - You can always era footage of a seizure can also be a great home throughout the day, a smart lock and child alone to go upstairs for five min- know where your child is with strategically tool for medical professionals to determine doorbell camera make it easy for them to utes without worrying that they may hurt placed interior smart door sensors that no- treatment and medications. enter and leave, while still keeping your themselves. tify you on your mobile device when they house safe and secure. It’s parents like this that can benefit open a door. Protect your child from potential house- the most from the peace of mind that hold hazards - You can protect and mon- Preempt water disasters - If your child comes from reliable smart home tech- Get the rest you need and still keep an itor your child by placing smart sensors nology. eye on your child - With an indoor camera on anything that opens and closes, like see Smart Home on page 35

Police from page 11 for the card to avoid prompting a reaction Involvement in the Criminal Justice System from the police officer. Among Youth on the Autism Spectrum. J 2,700 CIT programs operating in the Unit- If your autistic child is prone to eloping Autism Dev Disord 47, 340–346; https:// ed States,3 which would represent 15 to 17 or public tantrums or is non-verbal, teach doi.org/10.1007/s10803-016-2958-3. percent of police agencies. However, the them a series of simple commands, in- number of people interacting with CIT- cluding stop, come here, get down on the 2. Rogers, Michael S., McNeil, Dale E., trained officers is believed to be higher ground, hands up, turn around, and show and Binder, Renée L. (2019) Effective- than that proportion would indicate be- your hands. Familiarizing your child with ness of Police Crisis Intervention Train- cause the model is most easily adopted by them will better enable your child to follow ing Programs. The Journal of the Amer- large, urban police forces. an officer’s directions and, in turn, ensure ican Academy of Psychiatry and the Law It’s hard to say, though, how beneficial their safety. You may need to enlist the help Online, JAAPL.003863-19; https://doi. the training’s been. A 2019 meta-analysis of a professional, but try on your own first. org/10.29158/JAAPL.003863-19. published in The Journal of the Ameri- Ultimately, familiarity is the best means can Academy of Psychiatry and the Law of preventing any situation in the commu- 3. Rogers, Michael S., McNeil, Dale E., found evidence of an improvement in at- nity that involves someone on the autism and Binder, Renée L. (2019) Effective- titudes among CIT-trained officers and spectrum from escalating. Call your local ness of Police Crisis Intervention Train- an increased perception among them that police to let them know about your child’s ing Programs. The Journal of the Amer- they were using less force. But it’s been diagnosis. If they’re open to it, visit the sta- ican Academy of Psychiatry and the Law more difficult to establish whether CIT has tion, too. The more time your child spends Online, JAAPL.003863-19; https://doi. helped reduce officer and citizen injuries. Kristine Quinby, MEd, BCBA, LBS around the officers who patrol your neigh- org/10.29158/JAAPL.003863-19. And there’s debate as to whether it’s had borhood, the more comfortable they’ll be- any impact on the overall arrest rates. may be different, the parents of children come with them. 4. Bor J, Venkataramani AS, Williams DR, et While it’s been challenging for research- with special needs should also educate Gradually, the police will also come to al. (2018) Police killings and their spillover ers to even pinpoint what constitutes a their children about how to behave if know your child and their temperament. effects on the mental health of black Ameri- mental health crisis call, it’s almost impos- they’re ever approached by the police. Which was the case with the man at the be- cans: a population-based, quasi-experimen- sible to boil any such scenario down to a Error on the side of caution and assume ginning of this story. Fortunately for him, tal study. Lancet 392:302–10; https://doi. single trait. For instance, Blacks are nearly that the police in your community have not he’s known in his community, and the police org/10.1016/S0140-6736(18)31130-9. three times more likely to be killed by po- been specially trained in how to communi- are aware of his diagnosis. Because of that, lice than whites.4 Compound that with the cate with people with special needs. the threat of the situation going sideways 5. Bove, Vincenzo, and Evelina Gavrilova. increased militarization of policing nation- Encourage your child to remain calm. once they arrived was significantly reduced. (2017) Police Officer on the Frontline or wide5 and the risk of gun violence among Don’t make any sudden movements or a Soldier? The Effect of Police Militariza- certain segments of the population,6 and reach for anything, and don’t try to run Kristine Quinby, MEd, BCBA, LBS, is tion on Crime. American Economic Jour- those larger trends may be obscuring or away. In most situations, it would be ben- Founder, President and CEO of Potential. nal: Economic Policy, 9 (3): 1-18; DOI: even counteracting the effects of CIT. eficial for your child to disclose their di- She can be reached at Potentialinc.org, 10.1257/pol.20150478. agnosis. If they’re not confident in their [email protected], or (215) 579-0670. Fostering Trust ability to do it verbally, consider using a 6. Wintermute, Garen J. (2015) The Epidemi- replaceable card with some basic informa- Footnotes ology of Firearm Violence in the Twenty-First Many people of color talk to their chil- tion that can be given to the officer at the Century United States. Annual Review of dren about how they should interact with scene. They’ll still need to express, or at 1. Rava, J., Shattuck, P., Rast, J. et al. Public Health, 36 (1): 5-19; DOI: 10.1146/ police. And though their circumstances least signal, their intent before reaching (2017) The Prevalence and Correlates of annurev-publhealth-031914-122535. PAGE 34 www.AutismSpectrumNews.org AUTISM SPECTRUM NEWS ~ SPRING 2021

Parent Advocate from page 29 on the Cambridge Community basketball stabilization unit, and eventually a DDS supports but had been turned down for eli- court. Daniel’s initial honeymoon allowed homeless shelter. I continued advocating gibility and were not in a position to spend students were inappropriately referred, him to learn new skills of sign language, for Daniel during this difficult time, writ- years fighting the system. disciplined and not placed in the least gardening and basketball. His delayed re- ing and calling the state Department of In a fair hearing I became both his law- restricted environment were discussed. sponse to his dad’s death slowly surfaced Mental Health (DMH) eligibility officer yer and a fact witness, calling witnesses, Subsequently, the Massachusetts Depart- difficult behavioral responses both at home daily. After many months, Daniel received organizing exhibits and writing my final ment of Education threatened to with- and at school. Once again, I had to find an- eligibility from DMH and returned home memorandum. The hearing officer’s deci- hold special education entitlement mon- other school placement. I became an over- with a DMH outreach worker providing sion favored DDS. It provided an opportu- ey until Cambridge satisfied federal and whelmed single mother. Daniel required two hours a week. Feeling alone one eve- nity to appeal this decision to the Superior state SPED requirements. The PAC then more overall support than I or the public ning, Daniel called the police, which ini- Court. A year passed, doing various mo- requested a public hearing by the School school could provide. Multiple school tiated an emergency room visit and again tions. After I did my final oral argument, Committee to address the findings of placements had taken a toll on Daniel. His he was sent to the hospital. My advocacy to my surprise, the Superior Court Justice the review. Parent after parent testified, greatest need now was a school that would became fiercer. ruled in favor of my motion but remanded bringing noncompliance issues to life in see him through high school graduation. I reapplied to DDS for adult services; the the case back to DDS with questions. For a packed room. This hearing forced the Once again, I spent many months visiting more appropriate state service for Daniel. me, it meant, another round of a so called early retirement of the SPED Director of various in-state and out-of-state residential Again, he was denied eligibility. Using my “fair hearing” with the same hearing offi- thirty years who gave little support to par- schools with a Cambridge SPED adminis- citizen rights, I contacted my local state cer. Again, he reaffirmed his previous de- ents. I represented the PAC for the hiring trator. Using the expertise and presence of representative who made available her leg- cision. Fueled by anger and reminded of of a new director committed to addressing Daniel’s neuropsychologist, we argued a islative liaison to DDS to cut through the the Superior Court ruling in my favor, I ap- noncompliance issues. Major changes par- strong case for an out-of-district residen- red tape; but with no result. In the wake of pealed Daniel’s case back to the Superior ents advocated for were initiated across tial placement. a feverish nightmare, I stumbled forward. Court. This time the Court reversed DDS’s the school system. The team sent Daniel to a residential The time had come for an “out of the box” eligibility decision in Daniel’s favor. Now System reform is an exceedingly slow out-of-state school in Pennsylvania. Dan- action: a “sit-in” demonstration with my as a young adult of 32 years, Daniel has an- process. It didn’t happen soon enough to iel spent four continuous high school years women friends in the Mass Executive Of- other chance a decade later to begin where address Daniel’s specific needs. Daniel at The Pathway School. We both navigated fice of Health and Human Services. Within he left off at age 22. continued to fall behind his peers academi- many challenges throughout these years. an hour of that “sit-in” the Commissioner During the course of these legal bat- cally and socially by two years. I considered Daniel benefited from Pathway’s emphasis of DDS called my state representative say- tles, Daniel was slowly developing more an out-of-district private school placement on his positive abilities. Despite the expect- ing, “I wasn’t aware that Daniel had devel- independent skills through a day program for Daniel’s fourth grade year and initiat- ed ups and downs, it was an overall suc- opmental disabilities.” Disrupting business for successful artists at Gateway Arts and ed legal action. Mediation was offered as cessful experience that met Daniel’s needs. as usual, I had finally made enough trou- a travel training program offered by the a first step by the system. I went alone to In his final year Daniel graduated with his ble to be heard. Utilizing my new contacts MBTA. Daniel began to act and feel more the mediation as my lawyer confided that high school diploma. Daniel spent an ad- with an executive office planner and the confident. After a long search I found Step no one had been successful against Cam- ditional couple of years honing his daily DDS Commissioner, my extraordinary ac- by Step, a private, integrated holistic pro- bridge’s SPED director. Ironically, my ad- living skills at Chapel Hill, a post-graduate tion got Daniel out of the hospital and into gram with individual apartments where vocacy was responsible for my success in program in Connecticut. a DDS group home without DDS eligibil- residents hosted peer dinners with staff obtaining an out-of-district private place- As a young adult in his 22nd year, ity. This Boston group home initially gave support. Daniel began regaining his daily ment at Landmark School. Written into the Daniel returned to his hometown to face him a modicum of stability. The absence living skills within the context of commu- mediation agreement, I was “to cease all a desert of resources. After six years of of appropriate services for two years how- nity living. He now has continuity of sup- advocacy for special education students in 24/7 supports in out-of-state residential ever was consequential. Daniel lost many port services funded by DMH and DDS for the Cambridge public schools.” The direc- schools, Daniel was unrealistically ex- of his hard-gained living skills as well as his more independent life. tor agreed to send Daniel to Landmark, in pected to transition into the community confidence in his abilities. The group home My advocacy journey on behalf of Dan- exchange for eliminating my effective ad- without any supports. I networked exten- kept him out of the hospital, but part-time iel encompassed many different strate- vocacy for Cambridge students. I immedi- sively everywhere, and I went seeking an non-professional staffers could not provide gies. I operated on many levels and wove ately violated this agreement continuing to appropriate young adult program. Even- him with the necessary skills he would together different approaches at various advocate for students. tually I found a newly formed residential eventually need to become more indepen- stages of his development successfully ob- As Daniel aged, his difficulties com- group home operated by the Jewish Fam- dent. I decided to challenge Daniel’s DDS taining services for him as well as for oth- municating became more apparent. After ily and Children’s Service in Waltham, non-eligibility. ers. Throughout Daniel’s life, my vision a good year at Landmark, he developed primarily serving young adults on the In 2007, using a lawyer from Boston for him was always for full entitlement of behavior problems in response to unmet autistic spectrum. After a year of meet- Legal Services, Daniel appealed the DDS his civil rights and the most independent needs. Landmark was no longer a “good fit” ings with staff and potential residents, I decision and lost. At that time, I had no in- level of appropriate services. Throughout and he was told to look elsewhere for mid- moved Daniel there using my retirement kling that for multiple years I would mount this long journey I was continually learn- dle school. Researching programs, I found savings. Unfortunately, after a week at a marathon struggle involving two appeals ing new skills and benefiting from the an academically self-contained program this placement Daniel was sent by staff for fair hearings and two separate Supe- knowledge and support of other parents, within an inclusionary model in a Newton for a psychological hospital evaluation. It rior Court appeals. Over six years I acted advocates, lawyers and friends. Now my school that Daniel’s team agreed to. Be- landed him inappropriately in and out of as Daniel’s pro se lawyer, without formal Daniel can be all that he can be. ginning in Daniel’s 6th grade, this move hospitals for over a year. Daniel descend- legal experience. My hope was to create a coincided with the sudden tragic death of ed into chaos, totally unraveling, bounc- lifelong support system for my son as well Dr. Renee Kasinsky, parent advocate, can Daniel’s dad, my partner, while playing ing between different hospitals, home, a as for other persons who needed similar be reached at [email protected].

Dwelling from page 27 apply additional rules to ADUs. Disorders, I welcome any and all questions leg_video=&bn=A01410&term=2019&- It is important to ensure that the most and concerns readers may have. Please Summary=Y&Memo=Y and an increasing need for assistance with vulnerable members of our community are feel free to contact my office at 518-382- daily living and activities.6 not forgotten or left behind. People want to 2941 or send me an email at Santabar- 3. Ibid. More communities are now allowing live in their own communities near family [email protected]. You can also find ADUs that adhere to local size and lot and friends. As we begin the COVID-19 more information on my website at www. 4. www.aarp.org/content/dam/aarp/liv- placement limits in residential areas, as recovery process, we need to rethink hous- nyassembly.gov/Santabarbara. able-communities/livable-documents/ long as they meet to local zoning require- ing and find better options, like ADUs. documents-2019/ADU-guide-web-sin- ments. Other states including New Hamp- Making ADUs more accessible to New Footnotes gles-071619.pdf shire, Vermont, Oregon and Washington York families will help provide our loved have already passed laws requiring most or ones the ability to live independently, but 1. www.cdc.gov/ncbddd/autism/features/ 5. Ibid. all cities and counties to allow ADUs, with with a built-in safety net. adults-living-with-autism-spectrum-dis- some restrictions. Others have applied al- order.html 6. www.health.ny.gov/statistics/brfss/re- ready existing regulations for the construc- As the chair of the New York State As- ports/docs/2021-02_brfss_cognitive_de- tion of ADUs. But some local governments sembly Subcommittee on Autism Spectrum 2. www.nyassembly.gov/leg/?default_fld=&- cline.pdf AUTISM SPECTRUM NEWS ~ SPRING 2021 www.AutismSpectrumNews.org PAGE 35

Solution from page 27 complain that she wasn’t being included in the conversation? Although unlikely, I estate prices started to fall. The supply prepared her for these scenarios. “Smile of two-bedroom apartments during 2020 and listen. Only speak when someone ad- grew as demand plummeted. dresses you. If they call you Sam, please Eventually, I started seeing possibly-af- let it go. Remember, ‘less is more’ and fordable two-bedroom apartments with ‘teamwork makes the dream work.’” split bedroom layouts on high floors in These are catch phrases she enjoys and the neighborhood of our choice. At the understands. same time, my husband was working from Nothing ever goes smoothly for my home (thanks to COVID-19) and was able family. Samantha was perfectly charming to dash out on weekdays to see promising and our Zoom interview went well - un- apartments. til we suddenly lost our internet connec- Despite lower prices due to the pandem- tion! No kidding! Could there possibly ic, apartment hunting was still a frustrating be a worse time for our internet company process. Sometimes the layout was wrong, to fail us? Fortunately, we reconnected or the second bedroom was too small. by phone and successfully completed the Sometimes the apartment faced a brick interview. At the end, Howard remarked wall, or else the maintenance was crazy. happily that the apartment “checked all of Our goal was to take a small mortgage The view from our new apartment our boxes.” and pay it down, so Samantha could afford “You checked all of our boxes too!” One the maintenance someday. We figured that called my broker. But in October, Howard and a new, easy set of appliances, including board member responded kindly. even if she couldn’t afford the apartment I finally saw apartment 31G and fell in love. a washer dryer. We assured her that her So we’re in! Or at least we will be - after or chose to live elsewhere, her assisted de- Standing out on the balcony amid breathtak- room could be painted her favorite color the wall is restored to Samantha’s room, af- cision-making team could help her to sell ing views, I confessed, “I could definitely live of green, and all of her furniture would fit ter the kitchen and closets are redone, etc. it and buy something smaller, leaving her here and be excited about it.” (just barely). Sooner or later…. a nest egg. “It’s got a lot going for it,” Howard Still, I was a little concerned about Sa- One fine day, New York City will re- One day I complained to a friend, Andy agreed. “I love that we can stay in our mantha and the co-op board. Although open, and Manhattan real estate will appre- Cohen, whose father and uncles were resi- neighborhood, use the same dry cleaner our broker assured us that we were finan- ciate, and maybe, just maybe, Samantha dential builders on the Upper East Side in and walk to our favorite restaurants.” cially qualified and our references were can live happily and mostly independently the 1960s. Samantha would be happy too. We were stellar, I’ve learned to take nothing for ever after. “You should really look at the G line moving diagonally across the street and granted. Although we had disclosed Sa- at 300 East 74th Street, Andy advised. “It staying on Second Avenue - a smooth and mantha’s autism, she is sometimes a wild Marguerite Elisofon lives in New York City has a REALLY big living room and the simple transition. Our daughter would have card. What if one of the board members and blogs about disability issues for The Nev- bedrooms are split, so Samantha can have greater privacy, as our bedrooms would no addressed her as Sam instead Samantha er-Empty Nest and The Good Men Project. more privacy and so can you.” longer share a wall, and she could navigate (one of her triggers)? What if she ram- Her website is: www.MargueriteElisofon.com. No G line apartments were available over easily on her beloved Q train and familiar bled or didn’t answer the questions she Contact: [email protected] Twitter: the summer when I looked on StreetEasy and buses. Samantha would learn how to use was asked? Or what if she interrupted to MargueriteNEN

Scaffolded from page 4 AMBPP.2019.14216symposium dictors of Successful Employment Out- Employment Among Youth with an Autism comes for Adolescents with Autism Spec- Spectrum Disorder. Pediatrics, 129:1042– Transition program students. Ms. Di Gre- Migliore, A., Timmons, J., Butterworth, trum Disorders: A Systematic Literature 1049. doi:10.1542/peds.2011-2864 gorio has a B.S. from SUNY Buffalo and J., & Lugas, J. (2012). Predictors of em- Review. Journal of Autism and Develop- a M.S. in Rehabilitation Counseling from ployment and postsecondary education mental Disorders. 4(1):1-11. Standifer, S. (2012). Fact Sheet on Autism Em- Northeastern University. of youth with autism. Rehabilitation ployment. Autism Works. The National Con- Counseling Bulletin, 55(3), 176-184. doi: Roux, A.M., Shattuck, P.T., Cooper, B.P., An- ference on Autism Employment. Retrieved References 10.1177/0034355212438943 derson, K.A., and Narendorf, S.C. (2013). Post- from http://autismhandbook.org/images/5/5d/ secondary Employment Experiences Among AutismFactSheet2011.pdf . October 15, 2017. Bruyere, S., Sonnenfeld, J., Cunning- Moore, E.J. and Schelling, A (2015). Post- Young Adults with an Autism Spectrum Disor- ham, T., & Giannantonio (2019). Autism secondary inclusion for individuals with der Journal of the American Academy of Child Wehman P.H. et al. (2013). Competi- in the Inclusive Organization: Implica- intellectual disabilities and its effects on & Adolescent Psychiatry ,52 (9): 931-939. tive employment for youth with Autism tions for Research and Practice. Proceed- employment. Journal of Intellectual Dis- Spectrum Disorders: Early results from a ings from a Symposium for the Acad- abilities. DOI: 1744629514564448 Shattuck, P.T., Narendorf, S.C., Cooper, B., randomized clinical trial. Journal of Au- emy of Management Annual Meeting Sterzing, P.R., Wagner, M. and Lounds Tay- tism and Developmental Disorders, DOI Proceedings.(1):14216. DOI: 10.5465/ Pillay, Y. and Brownlow, C. (2017). Pre- lor, J. (2012). Postsecondary Education and 10.1007/s10803-013-1892-

Smart Home from page 33 With smart sensors, your wanderer will was tending to another child. Frantic, she of children with autism. trigger an alarm and mobile device noti- began a feverish search through the neigh- Now listen to Breck’s comments after loves water, smart flood sensors can come fication when they try to exit your home. borhood and called the police for support living with smart home technology: in handy. It’s not uncommon for children Paired with an outdoor camera on your when she couldn’t find him. “It’s been life-changing. For the first with autism to turn on faucets and leave the home, you can even know which direction Owen was eventually discovered wear- time since before Owen’s diagnosis, I can water running. If they happen to plug the they headed should they make it out before ing nothing but his diaper in the dirt in a have somewhat of a normal role as a mom. tub or sink, flood sensors in the bathroom you get to them. neighbor’s backyard. Without understand- I mean, I’m able to cook dinner now. Life or kitchen will notify you of the presence ing Owen’s condition nor seeing Breck’s was really scary before our smart home of water before damage occurs. Increasing Safety and Peace of Mind frantic and determined search for her be- system.” loved son, the concerned neighbors report- A smart home system isn’t the answer Prevent wandering - If your child wan- Consider the King family. Breck King ed the Kings to protective services for child to every challenge parents of children with ders, smart window and exterior door sen- and her husband are the parents of four neglect. This added additional heartache autism face, but with cameras, door and sors might be the most crucial smart home children, including their son Owen, who and pain to an already stressful situation window sensors and other smart devices, components you can install. It can take has autism and is prone to wander. On one for the Kings. Unfortunately, their story it certainly can help them find some ev- mere seconds for your child to disappear. occasion, Owen slipped away while Breck isn’t unique - it’s shared by many parents er-so-needed peace of mind. PAGE 36 www.AutismSpectrumNews.org AUTISM SPECTRUM NEWS ~ SPRING 2021

COVID-19 from page 29 up with boyfriend, stop taking meds, find that it has exposed the fact that many jobs the time. Many people with disabilities a new job or cut hours, end a shared living can be done from home. And new ways of have dreamed of the day when society work only part time, which causes us to arrangement, etc.). doing things are more accepted, such as would be more accommodating to us. By live in poverty. This makes it difficult for Peer mentoring can allow folks to learn video resumes, remote job coaching, and not having to be face-to-face all the time, it us to pay for the devices, and the internet how to live in their own apartment in the remote tours of workplaces. To make a goes a long way in allowing us to be active and phone services, that let us connect to community. You can match someone just change to remote work, some people will in our community without always having the community. In rural areas especially, moving into an apartment with another per- need Vocational Rehabilitation (VR) ser- to worry about transit issues, crowds and access to high-speed internet or internet in son with a disability who has experience vices. Some people may be more open to risking our health. general is poor. And many people with dis- living independently. This allows them to talking about what services they truly need Having the capacity to make all functions abilities need support to learn how to use learn life skills like cooking, apartment in a remote setting. For those of us with virtual is one of the greatest equalizers of various forms of technology. And some of upkeep, community navigation, budgeting, anxiety we may be more open to saying our time. The reason for this is a majority of us face challenges with not having control and promote better health by teaching them what barriers or challenges we have. And us in the disability community do not drive, over our lives and technology use, espe- how to eat healthy and exercise, and it can we may need to give VR counselors tips and reliable and accessible public transit is cially if we live in segregated settings or even offer mental-health support during on how they can better address our needs. hard to come by - and para transit service are under guardianship. It is common for tough times. By getting support from For people transitioning from school to is often unreliable or unacceptably slow. staff and parents to restrict our access to someone with a disability who has more adulthood, remote planning sessions have But, being able to do our day-to-day busi- technology. Without technology resources skills, a person can be supported to achieve made it easier for parents to attend. And ness online offers peace of mind to those of though, it is hard to survive and thrive in a the goal of living on their own. Lastly peer many pre-employment skills trainings, job us with chronic health issues. The less we fast-growing digital world. mentoring will go a long way toward re- fairs, and workshops are now being done have to worry about our health the better. While a virtual community life allows ducing the social isolation, loneliness and remotely. In a post-pandemic world, it is my hope us to avoid catching COVID-19 and elim- boredom caused by this pandemic. that we, as a society, can continue to offer inates transit barriers we face day in and Looking Ahead both virtual and in-person services. Doing day out, it is not without other challenges. Housing Supports in the Community this will allow agencies and businesses to Moving services online caused issues at the As a society if we take advantage of the reach a broader audience for events and ba- start of the pandemic. For instance, at the It is my hope that we move away from opportunities this crisis has given us, we sic government services. beginning of the pandemic we were told group homes and institutions and shift to- can come out of this pandemic nightmare One area where going all-virtual could that SNAP benefits (formerly food stamps) ward providing all services in the commu- to a more disability-friendly world. Our so help is in agencies that administer public couldn’t be used to pay for grocery deliv- nity. The pandemic has shown us again of called “normal” world prior to COVID-19 benefits like SSI, SSDI, Medicaid, SNAP ery. This problem is now solved in some the many risks that life in segregated set- was not great for a lot of us in the disability and so forth. I personally would like to see places but not all. We have also found in tings poses, and I think there will be a big- community. Social Security move to all-virtual when it many cases that web-based services are not ger push for people with disabilities to live The time for systems change is during comes to asking for various forms of doc- accessible to all people with disabilities. in their own apartments or in shared living the pandemic, not after it’s over. I say this umentation and filling out paperwork like arrangements. For this to occur we must because right now the media and society the work activity report or any other forms Peer Mentoring fight for massive funding in low-income are paying attention to the negative impact they need. Doing things like this online is accessible housing. The housing must be of COVID and how our current system much easier and less stress than having to The COVID-19 pandemic disruption on public transit routes close to downtown and attitudes about people with disabilities run around printing out stuff. If we could has led to higher rates of anxiety and de- areas. I say this because many people with puts vulnerable populations at high risk for allow for this to be done electronically it pression in our society. As we confront this disabilities do not or cannot drive and it is COVID-19. Now is when we should be de- would save time, energy, stress and money. mental health pandemic, we must make difficult to get to places. This is especially signing a system that makes us healthier and peer mentoring and peer support the norm. true for those of us who do not get any home safer. The high rates of COVID cases in seg- Editing support provided by Connor Peer mentoring is when a person with a and community-based waiver supports. regation gives advocates something to point Cleveland. Nicole LeBlanc is the coordi- disability supports someone else with a There will also be a need for funding for to when unions and pro-segregation groups nator of the Person-Centered Advisory and disability, and peer mentors can be paid or the technology and technology programs say we should keep segregate settings open. Leadership Group (PAL-Group) for the Na- unpaid. Peer mentors bring unique skills as that can help people to live independently. Prior to COVID, I often heard parents say, tional Center on Advancing Person-Cen- a result of lived experience with a disability An example of this the Howard Center in “My kid is too disabled to live in the com- tered Practices and Systems (NCAPPS). or mental health challenges. The services Vermont where they have a program called munity” and they should have a choice be- For more information, Nicole LeBlanc can they provide are more empowering and Safety Connection. This allows the agency tween community and segregated settings. be reached at [email protected] or less controlling, which is a big difference. I to support folks at night remotely with an Systems change can be scary, but if done (802) 505-0253. have found that peers with disabilities will alarm system. At night, Suzie Q will arm right it will lead to a healthier and more NCAPPS is funded and led by the Ad- often tell it like it is and tell the truth. Peo- her system and staff speaks to her over a inclusive world. This crisis is the perfect ministration for Community Living and the ple without disabilities will often give you loudspeaker to check in. After that, if she time for us to evaluate how we make busi- Centers for Medicare & Medicaid Services biased information or impose their values. has a crisis or someone breaks in, they will nesses more accessible, safer and flexible and is administered by Human Services For instance, it is not uncommon for sup- send a responder over to help. for customers and workers with disabili- Research Institute (HSRI). port staff to impose their values or be very ties. Flexibility is the “New Normal” in all The viewpoints expressed in this article opinioned when it comes to giving advice Working in the Community aspects of community life. Gone are the do not reflect the opinion of the Autism to people with disabilities (e.g., giving days when everyone in the business world Spectrum News Editorial Board or the Pub- their opinion on topics like should I break- The best thing about this pandemic is insists on being face to face 99‑100% of lisher, Mental Health News Education, Inc.

Child’s Right from page 23 and Transition Services that your child needs. of education. Immediately prior to opening 2. 34 C.F.R. § 300.43(a)(1) Seek out advocacy support or legal repre- MSR Legal, Oroma served for two years as be discussed. Then, think critically about sentation when necessary to preserve your the Director of Legal Services for Gersh 3. 20 U.S.C. § 1401(34)(A); 34 C.F.R. whether your child is on track to attain the child’s right to an appropriate Transition Plan. Academy, a private school for children § 300.43(a)(1)-(2) practical skills necessary to live productive- with Autism Spectrum Disorder. She holds ly and independently. Which basic skills For more information, email Oroma a Bachelor of Arts degree in Anthropolo- 4. 20 U.S.C.§ 1401(34)(B)-(C) does your child lack? Does your child have Mpi-Reynolds, Esq. at Oroma@MSRLe- gy with a concentration in sociocultural a means of functional communication? Can gal.Org or visit www.MSRLegal.Org. Oro- anthropology from Yale University, and 5. 8 N.Y.C.R.R. § 200.4(b)(6)(viii) your child get dressed in the morning? Send ma is the founder and managing attorney of a Juris Doctor degree from the Benjamin a text message? Travel on public transporta- MSR Legal & Consulting Services PLLC, a N. Cardozo School of Law of Yeshiva Uni- 6. 8 N.Y.C.R.R. § 200.4(d)(2)(ix) tion? Understand traffic signals? Complete New York-based special needs law practice versity. Oroma frequently blogs about the (a) a job application online? Count money? with offices in Queens and Nassau Coun- impact of the coronavirus pandemic on Operate an ATM machine or write a check? ty. Oroma primarily focuses on enforcing special needs parenting. Her posts can be 7. 20 U.S.C. § 1414(d)(1)(A)(i)(VIII); 34 Even if your child is already in high school, the rights of children (from birth to age 21) found here: https://www.msrlegal.org/spe- C.F.R. § 300.320(b)(1) it is not too late to obtain appropriate Tran- under the IDEA and Section 504 of the Re- cial-needs-parenting-the-coronavirus sition Services before he or she graduates or habilitation Act. Since 2008, she has rep- 8. 34 C.F.R. § 300.43(a) exits at age 21. An independent educational resented parents and school districts alike, Footnotes vocational assessment funded by your school including the New York City Department of 9. Ex Parte James, 713 So. 2d 869, 925 district may shed light on the Transition Goals Education and several Long Island boards 1. 20 U.S.C. § 1400(d)(1)(A) (Ala. 1997) AUTISM SPECTRUM NEWS ~ SPRING 2021 www.AutismSpectrumNews.org PAGE 37

Anesthesia from page 28 halation mask prior to intravenous line place- gery, regional anesthesia will help numb the is their perioperative experience different?. ment or have an intravenous line placed prior operative location for several hours after the Paediatr Anaesth, 25: 1103-1110. Day of Procedure to the operating room. Depending on many procedure. Additionally, the use of familial patient factors including patient age, weight, terms and simplistic language is beneficial Elliott, AB, Holley, AL, Ross, AC, Soleta, Elliott and colleagues have shown that and comorbidities, a decision is made as to in the recovery process. Typically, patients AO, Koh, JL. A prospective study comparing children experience higher preoperative anx- when the intravenous line will be placed. At with ASD are best served by early remov- perioperative anxiety and posthospital behavior iety if they have a diagnosis of ASD. Addi- pediatric-specific facilities, the intravenous al of intravenous cannula and by allowing in children with autism spectrum disorder vs tionally, they found more parents of children line is typically inserted after inhalational them to recover in a quiet room with parents typically developing children undergoing out- with autism said they would need a premed- induction, unless it would be deemed unsafe and comfort items present. patient surgery. Pediatr Anesth. 2018; 28: 142– 148. ication as compared to parents of typically to do so. With proper preparation and the as- The perioperative environment poses developing youth. During the preoperative sistance of guardians, intravenous placement challenges for children with autism due to Li-Ching Lee, Rebecca A. Harrington, Jen discussion with the anesthesia team, they may be quick and benign. changes in their daily routines, sensitives to Jen Chang, Susan L. Connors. Increased may suggest taking doses of home medica- Discussion with the anesthesia team re- sensory input, and communication difficul- risk of injury in children with developmen- tions prior to arrival to the hospital to ease garding anti-emetics and effective analgesia ties. Parents of children with autism are the tal disabilities. Research in Developmental the transition to the perioperative setting. depending on the procedure is necessary. experts and best advocates for the care their Disabilities. 2008: Pages 247-255. There are several sedative type medica- With knowledge of many patients’ oral aver- child receives during the procedure. Patients tions that may be given depending on the sions, effective control of risk of nausea and with autism require more consideration in Mills B. In the doctor’s office: a parent per- child and their behavioral needs. These may emesis is imperative. Typically, patients will the perioperative process to include priority spective. Pediatric Clinics of North Ameri- include midazolam (Versed), ketamine, or receive prophylaxis medications as well as scheduling, decreased wait times, sensory ca. 2012: 59: 13-18. dexmedetomidine (Precedex); which may intraoperative hydration to decrease the risk accommodations, and early discharge. be given via oral, nasal, or intramuscular of nausea postoperatively. Taghizadeh and Rady Children’s Hospital. My Surgery So- injection. It is important for the providers colleagues found it’s hard to distinguish be- Sean Antosh, MD, is a board-certified cial Story. Available: www.rchsd.org/docu- to know what medications the patient is tween pain, nausea, anxiety, or emergence pediatric anesthesiologist at Dayton Chil- ments/2020/06/adi-surgery-social-story.pdf/ on at home and if any adverse reactions delirium in patients with ASD as they re- dren’s Hospital in Dayton, Ohio. He has happened in the past to determine the best gain consciousness. Valuable information clinical interests in improving the periop- Swartz, JS, Amos, KE, Brindas, M, Girling, LG, medication, if needed, and route of admin- for recovery room staff is understanding a erative experience and care of children Ruth Graham, M. Benefits of an individualized istration. Arnold et al. found patients with patient’s typical response and expression with Autism Spectrum Disorders. Recently, perioperative plan for children with autism spec- ASD were less likely to receive a standard to pain. Arnold et al. suggests that patients he has developed dedicated sensory adap- trum disorder. Pediatr Anesth. 2017; 27: 856– 862. premedication; however, they were signifi- with ASD were 50% less likely to complain tive environments in the perioperative en- cantly more likely to receive a nonstandard of pain, and likely to have similar postop- vironment at Dayton Children’s. He may be Taghizadeh, N., Davidson, A. , Williams, premedication - most commonly intramus- erative pain experiences to patients with- contacted at: antoshs@childrensdayton. K. and Story, D. (2015), Autism spectrum cular ketamine. Sometimes, a combination out ASD. Vlassakova recommends the use org for further questions or information. disorder (ASD) and its perioperative man- of medications may be necessary in rapid- of the FLACC (Face, Legs, Activity, Cry, agement. Paediatr Anaesth, 25: 1076-1084. ly escalating maladaptive behaviors for the Consolability) scale to assess pain. A mul- References safety of the patient and staff. timodal approach for adequate analgesia Vlassakova BG, Emmanouil DE. Periop- Depending on a facility’s policies and may consist of acetaminophen, anti-inflam- Arnold, B., Elliott, A., Laohamroonvora- erative considerations in children with au- procedures, a pediatric surgical patient will matories, opioid medications, and possibly pongse, D., Hanna, J. Norvell, D. and Koh, tism spectrum disorder. Curr Opin Anaes- either undergo general anesthesia via an in- regional anesthesia. Depending on the sur- J. (2015), Autistic children and anesthesia: thesiol. 2016 Jun;29(3):359-66.

Robots from page 17 math to struggling students with autism is them to overcome the challenges they face benefit the larger community. Interactive a challenge that can be made much more every day. In many cases, these challenges robots for autism may prove to be the an- and teachers who want to see their students manageable with technology. By provid- prevent children from learning the neces- swer that we were all hoping for. learn, thrive, and have the best develop- ing a stimulating, hands-on environment, sary skills they need to succeed in life. mental experience possible. Using a wide teachers can help their students discover If you have a child with autism who Do you want to unlock your child’s full range of technology, such as Robot-Assist- the wonders of technology and embrace struggles to interact with you, Robot-As- potential? MOVIA’s Robot-assisted Instruc- ed Instruction, to enhance the learning and the opportunities it offers them. sisted Instruction can make a great deal of tion (RAI) helps children with special needs socialization experience, educators can One of the most notable benefits that difference in your life. And, since many and abilities learn and grow using the best communicate the fun and imagination that robotic assistive technology could ever children with autism are in great need of collaborative robotic technology. Contact us all children need to learn. contribute to society would be to engage extra support, especially in improving their today by visiting www.moviarobotics.com There are countless benefits of robotics children with autism or other learning dis- communication abilities and helping them if you would like to learn more about MO- in special education. Teaching science and orders in meaningful interactions, helping interact with others, this technology could VIA’s robotic assistive technology systems!

Finding Home from page 15 ing able to “do his own thing” while hav- home, particularly since he and his family In hearing the stories of these Vista stu- ing many of his friends as neighbors. He were recently able to purchase his condo- dents and members, it is evident that each care of their home by sharing chores and and several of his friends decided to start minium. A passionate Marvel fan, Nathan person is thriving because they found a cooking for each other, which is especially a tradition of having weekly dinners to- made his home feel like “him” by decorat- home and a life that is the right fit for them. helpful for Patrick on days he goes to his gether, often meeting at Chip’s Pub prior to ing with movie posters and dioramas and Having and maintaining your own home, job at Ventures Business Services, a social COVID. The friends have maintained their setting up a space for his art supplies. To building a social circle, finding meaning- enterprise of Vista. tradition during the pandemic by meeting make his kitchen suit his needs, Nathan ful employment, and engaging with your Patrick is one of the many Vista mem- virtually. On workdays, Carl takes the local purchased an organizational shelving unit community is possible if you are willing to bers who continue to receive support from 9 Town Transit bus route from Clinton to to hold many of the special devices he be flexible in how you accomplish it. We Life Skills Instructors to guide the comple- his job at Robert’s Food Center in Madi- loves to use. Using an onion chopper, for encourage you to imagine the possibilities! tion of certain tasks. Life Skills Instruction son, where he engages with customers instance, helps him feel more comfortable is tailored to the individual. For example, and co-workers. With almost 90% of Vista and excited in the kitchen. Another new Please note: The names of the Vista Leslie, a highly independent woman with members who desire to work in paid po- item is his air fryer, which he independent- students and members in this article have autism, is adept with the stove and loves sitions along the shoreline, members often ly cooks with to make healthy food options been changed for privacy reasons. Becky making hamburgers, garlic lemon chicken, utilize public transportation independently like falafel. Lipnick is the Communications Lead at meatloaf, and other recipes with minimal or take advantage of Vista’s ride service to Nathan has had a unique journey at Vis- Vista Life Innovations. For over 30 years, direction from her LSI. Instead, Leslie and get around their communities. ta; when he first moved into the dormitory Vista has supported individuals with dis- her LSI work as a team to get tasks done Nathan, another Vista member with au- after arriving from Florida, he was deter- abilities achieve personal success. Learn faster, like when they divide up the grocery tism who has his own condominium, finds mined to move back to the sunshine state more at www.VistaLifeInnovations.org or list during shopping excursions. Outside ways to stay social through the Vista Vil- and be with his family as soon as he gradu- contact Becky at BLipnick@VistaLifeInno- of Life Skills Instruction, Leslie has built lage activities. Because Vista members live ated. Yet, as Nathan began to make friends, vations.org. an active schedule for herself filled with across the shoreline, the “Vista Villages” join clubs to develop his writing and artis- walks around Clinton, playing yard games allow members who live in nearby towns tic talents, and ultimately find a job that References like cornhole with her roommates, and at- to come together for social gatherings. he loves, he realized that the shoreline had tending Vista activities like bowling. Typically, these gatherings would include truly become his home. “I love it here. I Dealing with Change - A Guide for All Some individuals prefer to live alone parties and in-person activities, but events was so happy to come back to my friends Audiences. (2020, August 14). National and are still able to stay social and engage have turned virtual during the pandemic. and my job after I temporarily moved back Autistic Society. https://www.autism.org. with the community. Carl, a Vista member Nathan is also someone who has embraced to Florida during COVID. This is my new uk/advice-and-guidance/topics/behaviour/ with autism for over 20 years, enjoys be- the concept of personalizing his own home, and this is my family.” dealing-with-change/all-audiences PAGE 38 www.AutismSpectrumNews.org AUTISM SPECTRUM NEWS ~ SPRING 2021

Executive Function from page 6 Alissa Cappelleri, MAT, Program Coor- fluency, and inhibition. Developmental dinator, New Frontiers Executive Function neuropsychology, 27(3), 379-401. compilation of messes if one struggles to Coaching, can be reached at [email protected] identify and address them as they come up. or (646) 558-0085. Panerai, S., Tasca, D., Ferri, R., Genitori Knowing what one takes note of and will D’Arrigo, V., & Elia, M. (2014). Executive act on can help to determine what needs to References functions and adaptive behaviour in autism be done to set up an individual for success. spectrum disorders with and without intel- It is no secret that it can be much more Dawson, P., & Guare, R. (2018). Executive lectual disability. Psychiatry journal, 2014. gratifying to participate in a preferred ac- Skills in Children and Adolescents: A Prac- tivity than complete a chore that will not tical Guide to Assessment and Intervention Silberman, S. (2015). Neurotribes: The have immediate consequences. Any mo- – Third Edition (The Guilford Practical In- legacy of autism and the future of neurodi- ments to bring awareness to those conse- tervention in the Schools Series). versity. Penguin. quences helps to rationalize the importance of prioritized tasks. Dawson, P., & Guare, R. (2016). The smart Smith, L. E., Maenner, M. J., & Seltzer, Overall, it should be noted that such strat- but scattered guide to success: How to use M. M. (2012). Developmental trajectories egies to support individuals on the autism your brain’s executive skills to keep up, in adolescents and adults with autism: The spectrum with living independent lives stay calm, and get organized at work and case of daily living skills. Journal of the are not revolutionary nor wildly different at home. Guilford Press. American Academy of Child & Adolescent from those who are seen as neurotypical Psychiatry, 51(6), 622-631. use. However, it is the focused effort and Gray, K. M., Keating, C. M., Taffe, J. R., intentionality that make all the difference. Brereton, A. V., Einfeld, S. L., Reardon, T. Wallace, G. L., Kenworthy, L., Pugliese, Rather than riding on the assumption that Alissa Cappelleri, MAT C., & Tonge, B. J. (2014). Adult outcomes C. E., Popal, H. S., White, E. I., Brodsky, such tools will be uncovered and imple- in autism: Community inclusion and living E., & Martin, A. (2016). Real-world exec- mented on one’s own, support should be create focused plans and cover a breadth skills. Journal of autism and developmen- utive functions in adults with autism spec- given to help guide a productive life in the of daily living skills. Coaching through tal disorders, 44(12), 3006-3015. trum disorder: Profiles of impairment and vision the individual themselves establish- modeling and being alongside them for re- associations with adaptive functioning and es. Being a source of support in operation- peated practice can be beneficial and instill Kleinhans, N., Akshoomoff, N., & Delis, co-morbid anxiety and depression. Journal ally defining what each task looks like and confidence in one’s own competence in the D. C. (2005). Executive functions in au- of autism and developmental disorders, where it will fit in a given day is helpful to long run. tism and Asperger’s disorder: flexibility, 46(3), 1071-1083.

Challenges from page 31 sports or games that may not be of inter- ment of the individual because such is not vide recreation (e.g., artistic talents) can est or, more significantly, that they are not the result. In all the above cases, it is im- use these to become an accepted and even residences for specific individuals will also able to participate in (especially the many perative that the individuals and organiza- valued member of that community. be of great value. autistics who have poor motor skills and tions that organize recreational activities Communities consisting entirely of au- coordination). Other activities may simply for autistics be completely aware of the tistics have been forming in recent years, Travel and Transportation be entirely outside their restricted range needs of this population, and always take particularly support and social groups. I of interests. Although such activities can them into full consideration when plan- have had the opportunity to attend, facil- Closely related to the availability of ade- sometimes be successfully used to broaden ning activities. itate, and help to organize such groups quate housing is that of adequate transpor- an autistic person, there can also be strong with GRASP (www.grasp.org) and As- tation. Outside of a few major metropolitan aversion. In the latter case, the autistic is Community Living pies for Social Success (AFSS) (www. areas and large cities (such as New York, hardly well-served by such efforts despite nyautismcommunity.org), both of which where I live) with good public transit, this their good intentions. Regardless of their housing situation, are peer-run organizations (for and by in- requires having access to a car or otherwise Activities that are more appropriate for autistics need an opportunity to become dividuals on the autism spectrum). Such being dependent on someone else who can autistics usually center around their spe- a part of the greater community in which groups provide communities where autis- drive you everywhere. For many autistics, cialized interests and, when present, areas they reside, or otherwise find an adequate tic challenges are understood and appreci- learning to drive has always presented a of unusual abilities (i.e., splinter skills). community to which they can belong. The ated. For those who belong to other com- significant challenge, even when they can Although these vary widely among indi- former situation is usually preferable and munities, these can provide an additional afford the cost and expenses of an automo- viduals, it is often observed that significant will often require appropriate assistance refuge where they can address issues that bile. As such, some form of transportation numbers of autistics gravitate towards cer- and support services to make it possible. may not be understood, let alone appreci- needs to be made available to autistics tain specific interests and, as such, group In particular, the challenges faced by most ated, by their more mainstream communi- whatever their residential setting. activities planned around these will attract autistics with social skills and socializa- ties. For others who, sadly, have not found If they are fortunate enough to live in at least a few (perhaps more) members of tion need to be addressed, perhaps exten- communities to be a part of, they consti- a location served by public transit, they an autistic community. More generally, au- sively. Even something as basic as finding tute perhaps their only opportunity to be- need to know how to access and navigate tistic interests largely tend to lie within a and being introduced into local commu- long to one. Traditionally, these groups through the system, or else be instructed in confined number of restricted categories. nities can present challenges that require have met in person at a variety of venues such (ironically, more than a few autistics As such, many activities related to any of intervention; such services must be made (e.g., meeting rooms, diners) but, with the are greatly fascinated by and have exten- these categories, while not catering to the readily available when needed. A more advent of the COVID-19 pandemic, the sive knowledge of their local transit sys- specific interests of some individual au- fundamental prerequisite, however, is that number and frequency of online meetings tem – they will need little or no help with tistics, may nevertheless be acceptable to instruction and coaching and, where war- among these groups has greatly prolifer- this). Otherwise, provisions must be made them, and thereby constitute suitable group ranted, therapeutic interventions for so- ated (some are held every week) over the for adequate transportation to all essential activities for larger numbers of autistics. cial skills and socialization be provided at past year. The result has been a dramatic activities, such as work and medical or so- Finally, activities outside the range of an the earliest appropriate time. These skills flourishing of these virtual communities, cial service appointments, as well as rec- individual’s specific interests but to which are essential for an autistic to have any not to mention a considerable mitigation reational and social ones. For those who there is no significant aversion can be used chance of being successfully integrated of the isolation experienced by so many can learn to drive a car, driving instruction to broaden their horizons. This in turn can into any community, particularly a neuro- during the pandemic. appropriate for autistics needs to become a help with improved socialization into wid- diverse one. In all the above instances, the presump- high priority, given the high percentage of er and more diverse communities. As was the case for recreational activi- tion that the skills required are so basic autistics who do not drive. Finally, activities outside the autistic ties, the specialized interests and unusual and instinctive that they do not need to community that involve extensive social- talents of many autistics can be a key to be taught must be completely discarded Recreational Activities izing, particularly those requiring higher community involvement. If a substantial when dealing with autistics, regardless of levels of social skills, are generally not segment of the local community happens their perceived intelligence or whatever Recreation constitutes a significant part appropriate recreation for autistics, and to share a particular interest, this can great- unusual talents they might have, however of life for everyone, including autistics. should generally be avoided. At the very ly help an autistic become part of that exceptional. This needs to be done if the Many autistics, however, have unusual least, such activities need to be accompa- community. Otherwise, finding other com- fundamental needs of the autistic commu- preferences in their choices of recreational nied by appropriate interventions such as munities of individuals dedicated to that nity, including the need for community, are activities and interests. As such, traditional social skills training or coaching, or other interest can be of tremendous value. Also, to be met. group activities that are organized by social forms of instruction or therapy. The result an autistic who has splinter skills that can service entities and assisted living facili- should always lead to greater acceptance be used to either meet a practical need of Karl Wittig, PE, is Advisory Board Chair ties may not be suitable for many autistics. by and involvement with the respective the community (such as technical, infor- for Aspies For Social Success (AFSS). Karl For example, these activities often involve communities, and never to discourage- mation, or financial skills), or to help pro- may be contacted at [email protected]. AUTISM SPECTRUM NEWS ~ SPRING 2021 www.AutismSpectrumNews.org PAGE 39

Mental Health News Education Autism Spectrum News Board of Directors Editorial Board

Chair Cindy Alterson, PhD, BCBA, Principal of Devereux NY CARES Clinical Director, Devereux Advanced Behavioral Health-New York Debbie Pantin, MSW, MS-HCM, President and CEO Outreach Joel Bregman, MD, Psychiatrist Vice-Chair United Community & Family Services

Rachel A. Fernbach, Esq, Deputy Director and Assistant Joseph D. Buxbaum, PhD, Director General Counsel, New York State Psychiatric Association Seaver Autism Center - Icahn School of Medicine at Mount Sinai Secretary Susan Cortilet-Jones, MS, LMHC, Integrative Wellness Coach for Adults Yvette Brissett-André, MPA, Executive Director and CEO Discovering Your World, Corp. Unique People Services Treasurer Lynda Geller, PhD, Founder, Spectrum Services A Cooperative of Independent Practices & Organizations, New York, NY Kimberly Williams, MSSW, President and CEO Vibrant Emotional Health Michael Gilberg, Esq. Members of The Board Special Education Attorney, NY/CT

Anita Appel, LCSW, Senior Health Care Consultant Ami Klin, PhD, Director Sachs Policy Group Marcus Autism Center Peter D. Beitchman, DSW, LMSW, Principal Behavioral Health Consultation Becca Lory Hector, CAS, BCCS Autism, Neurodiversity, & Inclusion Consultant/Speaker/Author/Advocate Constance Y. Brown-Bellamy, MPA, President and CEO Brown Bell Consulting Cecelia M. McCarton, MD, Founder and Executive Director Jonathan P. Edwards, PhD, LCSW, ACSW, Program Consultant The McCarton Foundation, The McCarton School (for Autism) New York City Department of Health and Mental Hygiene Judith R. Omidvaran Roy Kearse LCSW, CASAC, VP Recovery Services & Community Partnerships Autism Parent Advocate, New York Samaritan Village Matthew Loper, CEO Theresa Pirraglia, Co-Founder and Board Member Wellth FECA, The Foundation for Empowering Citizens with Autism

Barry B. Perlman, MD, Past President Howard Savin, PhD, Chief Clinical Officer New York State Psychiatric Association First Children Services Jorge R. Petit, MD, CEO Coordinated Behavioral Care (CBC) Pat Schissel, LMSW, New York Director Asperger/Autism Network (AANE) Keri Primack, CFP, Senior Financial Advisor, SVP Gerstein Fisher Alison Singer, President Joshua Rubin, MPP, Principal Autism Science Foundation Health Management Associates Fred Volkmar, MD, Professor Founding Chairman Yale Child Study Center Alan B. Siskind, PhD, LCSW Linda J. Walder, Esq., Founder and Executive Director Executive Staff The Daniel Jordan Fiddle Foundation Ira H. Minot, LMSW, Founder Dianne Zager, PhD, Head of School Emerita, Shrub Oak International School David H. Minot, BA, Executive Director and Publisher Professor Emeritus, C.W. Post, Long Island University

Autism Spectrum News is a Quarterly Print and Online Publication of Mental Health News Education, Inc., a 501(c)(3) Nonprofit Organization All inquiries regarding advertising, subscriptions, sponsorships, and submitting an article should be directed to: David H. Minot, BA, Executive Director and Publisher (978) 733-4481 • [email protected] • 460 Cascade Drive, Effort, PA 18330 • www.AutismSpectrumNews.org Mental Health News Education, Inc. does not endorse the views, products, or services contained herein. We are not responsible for omissions or errors. Mental Health News Education, Inc. is not responsible for articles submitted to us without the final approval of the organization’s Executive Director, CEO, or Public Relations Department. All articles and Advertisements are subject to final approval by our Editorial Board. We reserve the right to edit any article sent to us. Disclaimer of Endorsement and Liability: The information, opinions and views presented in Autism Spectrum News (ASN) reflect the views of the authors and contributors of the articles and not of ASN, the Editorial Board or its publishers. Publication of articles, advertisements or product information does not constitute endorsement or approval by ASN and/or its publisher. ASN and/or its publisher cannot be held responsible for any errors or for any consequences arising from the use of the information contained in this publication. Although every effort is made by the Editorial Board and the publishers to see that no inaccurate or misleading data, opinion or statement appear in this journal, the data and opinions appearing in the articles including editorials and advertisements herein are the responsibility of the contributors concerned. The publishers and the Editorial Board accept no liability whatsoever for the consequences of any such inaccurate or misleading data, information, opinion or statement. Copyright © 2021 Mental Health News Education, Inc. All rights reserved. Content contained in this publication may be reproduced for one-time personal use. However, anyone wishing to reproduce and distribute any content from within this publication for purposes other than personal use must request this intention in writing directly to the publisher. Failure to do so will be in violation of the copyright held by this publication. PAGE 40 www.AutismSpectrumNews.org AUTISM SPECTRUM NEWS ~ SPRING 2021

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