FEBRUARY 2022
INSIDE: • Making A Difference: Meet Shawn Fulton with Self Advocates of Indiana (SAI) • The Indiana Education Scholarship Account (INESA) Program • Meet the Short Family • Non-Profit Spotlight: Mark 2 Ministries • Meet Dorie Zipperle - “Let Me Be Brave in the Attempt” • The ABCs of IEPs: Extended School Year (ESY) services • Meet the Newell Family • Pastor’s Corner: Lessons Learned • Local Events and More
TO GET THE DIGITAL COPY OF SNL THROUGH TEXT MESSAGE TEXT THE LETTERS SNL TO THE NUMBER 55433.
ON THE COVER:
Meet the Short Family Tammy, Phillip, and Leeann Photos by: Buonanno Photography
2 Special Needs Living • February 2022
More than a Trampoline Park Adrenaline is the perfect place for an adventure! Have a blast jumping on trampolines (of course), channeling your inner ninja warrior, making it to the top of the climbing wall, or challenging your friends in jousting. We are the largest indoor adventure park in Indiana, with 50,000 square feet of attractions, including our ALL NEW ropes course, warped wall, stunt fall, all sports course, harnessed climbing wall
and MORE!! Sensory Friendly Play every Monday from 11:00 a.m. - 4:00 p.m. Call or email to reserve your spot!
10080 E 121st St Suite 182 Fishers, Indiana 46037 317-572-2999 adrenalinefishers1.com events@adrenalinefishers.com February 2022 • Special Needs Living
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I M P O RTA N T
N UMBE R S 317-977-2375
Arc of Indiana www.arcind.org
317-257-8683
ASK: About Special Kids, Inc. www.aboutspecialkids.org
317-676-4222
Autism Community Connection www.autismcc-in.org
800-609-8448
Autism Society of Indiana www.autismsocietyofindiana.org
877-241-8144
Blind and Visually Impaired Services (BVIS)
800-545-7763
Bureau of Developmental Disabilities Services (BDDS)
800-545-7763
Bureau of Rehabilitation Services (BRS) Deaf and Hard of Hearing Services (DHHS) DHHSHelp@fssa/in.gov
www.n2pub.com Turning Neighborhoods Into Communities © 2022 Neighborhood Networks Publishing, Inc.
AREA DIRECTOR PUBLISHER
Jamie McCabe jamie.mccabe@n2pub.com
317-233-4454
Indiana Family and Social Services Administration (FSSA) - www.in.gov/fssa/index.htm
317-232-7770
Indiana Governor’s Council for People with Disabilities (GPCPD)
812-855-6508
Indiana Resource Center for Autism https://www.iidc.indiana.edu/irca
317-233-1325
Indiana State Department of Health
844-446-7452
Indiana Statewide Independent Living Council (INSILC)
855-641-8382
Indiana Works
800-332-4433
INSOURCE http://insource.org/
800-622-4968
Disability Determination Bureau
888-673-0002
Division of Aging (IDA)
800-457-4584
Medicaid Disability
800-403-0864
Division of Family Resources (DFR)
317-232-7770
Medicaid Waivers
317-232-7800
Division of Mental Health and Addiction
800-772-1213
Social Security Administration (SSA)
317-925-7617
Down Syndrome Indiana
877-511-1144
Early Childhood and Out of School Learning (OECOSL)
317-466-1000
Easterseals Crossroads https://eastersealscrossroads.org
911
Family Voices Indiana www.fvindiana.org
800-545-7763
First Steps
317-232-0570
Social Security Disability Insurance (SSDI)
877-851-4106
Special Education Questions
317-871-4032
United Cerebral Palsy Association of Greater Indiana
800-545-7763
Vocational Rehabilitation Services (VR)
Emergency
844-323-4636
574-234-7101
1-800-772-1213
INSOURCE www.insource.org Indiana Department of Education: Office of Special Education www.doe.in.gov/specialed
4 Special Needs Living • February 2022
SCAN TO VIEW THE PAST ISSUES OF SPECIAL NEEDS LIVING
SCAN TO GET THE DIGITAL COPY OF SNL THROUGH TEXT MESSAGE
DISCLAIMER: Any articles included in this publication and/or opinions expressed therein do not necessarily reflect the views of The N2 Company d/b/a N2 Publishing but remain solely those of the author(s). The paid advertisements contained within the Special Needs Living magazine are not endorsed or recommended by The N2 Company or the publisher. Therefore, neither The N2 Company nor the publisher may be held liable or responsible for business practices of these companies. NOTE: When community events take place, photographers may be present to take photos for that event and they may be used in this publication.
Midwest Academy is an intentional educational community serving students in grades 3-12 with ADD/ADHD, language-based learning differences, high functioning autism, and processing challenges. The school is designed to develop academic achievement, self-acceptance, and personal accountability. We offer our students a small, engaging educational setting, an inspiring progressive curriculum, and a culture focused on the development of the whole child.
Schedule a tour today. 317-843-9500 www.mymwa.org | 1420 Chase Ct. Carmel, IN | admissions@mymwa.org February 2022 • Special Needs Living
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Sponsor I N D E X Thank you to all the below businesses who have chosen to support Special Needs Living magazine each month!! They would be delighted to help you with your next project or need. If you know of a business that helps those with special needs and would be a good resource for families please let us know. Jamie.McCabe@n2pub.com. If you run a business and would like to be involved or support this magazine you can set up a time to talk here https://calendly.com/jamie-mccabe/special-needs-living ABA & COMPREHENSIVE SERVICES K1ds Count Therapy (317) 520-4748 ABA SERVICES Adapt for Life ABA (317) 383-0188 Applied Behavior Center for Autism (317) 849-5437 Autism Center for Enrichment (317) 436-7080 BehaviorWorks ABA (317) 731-7777 Mindful and Modern ABA Therapies (317) 827-7777 Piece by Piece Autism Center (765) 481-2261 ABA/COMPREHENSIVE SERVICES The Hope Source (317) 578-0410 ACCESSIBILITY PRODUCTS AMRamp (260) 519-1935 ACCOUNTING/PAYROLL/TAXES Borshoff Consulting LLC. Sherry Borshoff (317) 902-6539 ADULT DAY CENTER Adult Day Centers Jay Lugosch (317) 296-8815 ADVOCACY/EVALUATIONS PEAS for Kids (920) 980-1172
6 Special Needs Living • February 2022
ASSISTANCE DOG Indiana Canine Assistant Network, INC. (ICAN) (317) 250-6450 ATTORNEY Hostetter & Associates (317) 852-2422 ATTORNEY-WILLS/TRUSTS/ TESTATE PLANNING Law Office of Elizabeth A. Homes LLC (317) 660-5004 CASE MANAGEMENT Connections Case Management (317) 440-0637 IPMG - Indiana Professional Management Group (866) 672-4764 CAT CARE & SITTING Bastet Cat Care & Sitting (317) 919-1948 CBD SUPPLIER Indy CBD Plus (317) 961-0191
DENTAL CARE Children’s Dental Center (317) 842-8453 ELECTRICAL SERVICES 21 Electric (317) 449-0021 FINANCIAL Charter Advisory Corporation David Yearwood (317) 844-7416 Munder Financial James Munder (317) 238-6621 WestPoint Financial Group Gordon Homes (317) 567-2005 FUNCTIONAL MEDICINE Wholestic Nutrition (317) 429-0111 GYMNASTICS Body by GymRoots Studio (317) 579-9300
CLEANING SERVICE Pristine Cleaning Service (317) 617-5572
HEALTH & WELLNESS LifeVantage - Team Richards Kristin Richards (317) 698-5264
COFFEE ROASTER Tinker Coffee Co. (317) 438-5728
HOME CARE Amiable Home Care Inc. (317) 802-1746
COUNSELING SERVICE Mark 2 Ministries (317) 777-8070
HOME CARE SERVICES SafeInHome (855) 476-6665
DAY / BEHAVIORAL SERVICES Developmental Disabilities Systems INC. - DDSI (317) 477-8240
INDOOR TRAMPOLINE PARK Adrenaline Family Adventure Park (317) 572-2999 adrenalinefishers1.com
INSURANCE State Farm John Cole (317) 430-1958 INVESTMENT MANAGEMENT Dan Claxton Investment Advisory & Broker Dan Claxton (317) 250-8080 LANDSCAPING/LAWN CARE/ LANDSCAPE LIGHTING Franco Landscaping, Inc (317) 858-3858
ORTHODONTICS Hallmark Orthodontics (317) 773-5515
Midwest Academy (317) 843-9500
Rigsbee Hall Orthodontics (317) 574-0612
SCHOOL - SPECIAL NEEDS The Fortune Academy (317) 377-0544
PARKS & RECREATION Johnson County Parks & Recreation (812) 526-6809
SCULPTURE, POTTERY & ART Ripple Mobile Arts (317) 514-8469
PEDIATRIC THERAPY Wee Speak (765) 446-8300
SPECIAL EDUCATION CONSULTING IEP Services, LLC. Sheila Wolfe (317) 573-9610
MOBILITY / ACCESSIBILITY CYA Mobility (317) 530-2541
REAL ESTATE Encore Sotheby’s Patti & Jeff Carroll (317) 809-5839
MORTGAGE CrossCountry Mortgage (317) 666-4679
REALTOR Carpenter Realtors-Jeremy Page (317) 413-5311
MUSIC THERAPY Resounding Joy (858) 888-0899
F.C. Tucker Nicole Lyon (317) 501-0639
NEUROFEEDBACK THERAPY Indy Neurofeedback (317) 888-8500
REGENERATIVE MEDICINE/ STEM CELL THERAPY Destination ReGen (317) 522-1980 SCHOOL Dynamic Minds Academy (317) 578-0410
SUPPORT SERVICES Easterseals Crossroads (317) 466-1000 Noble (317) 375-2700 The ALTRUIST Group, LLC (317) 547-3041 x1005 THERAPY & TESTING SERVICES The Brain Center (317) 748-0034 VIDEOGRAPHY/PHOTOGRAPHY Deliver Video Eli Walker (765) 602-1046
Adapt for Life provides a positive learning environment
to help your child learn & grow! Currently No Waitlist for ABA Therapy Services Individual Treatment Plans
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Team Collaboration
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317-383-0188 · adaptforlifeaba.com · 6640 Parkdale Place, Ste R, Indianapolis, IN 46254 February 2022 • Special Needs Living
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MEET THE
Special Needs Living TEAM JAMIE MCCABE Publisher & Area Director
CHRISTINA MCGAIRK Editor and Writer
CHRISTIA WOODFORD Publishing Assistant and Local Events
MARIA SMIETANA Editor & Writer
JANE GAILEY Event Manager
HEATHER GREGG Photographer 21 Vines Photography
ANGIE ARLINGTON Community Engagement Coordinator / Writer and Contributor
CHRISTIE AND NATHAN BUONANNO Buonanno Photography
KENDAL FORD Kendal Nicole Photography
ISAAC ROMAN Writer and Photographer
WRITER & CONTRIBUTORS
ANGELICA N. GRAY, MA, BCBA, LBA
AARON OLSON
SHEILA WOLFE
DEANDRA YATES
PAUL HATHCOAT
MATT KNIGHT
DORIE ZIPPERLE
8 Special Needs Living • February 2022
February 2022 • Special Needs Living
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non-profit spot light
By: Angela Arlington
mark 2 ministries meet Aaron Scheffler History: Mark 2 Ministries was formed in 1986 by Steve Boles. Steve was studying to obtain a deaf education degree from Ball State University. He noticed that when he was hanging around with his friends who were deaf, his church friends weren’t around and vice versa. He decided that he needed to do something to help merge his two worlds. Mark 2 was then birthed to help the church create environments where the special needs community would be welcomed and integrated into the life of the church. “We’ve helped 100s of churches throughout the Eastern U.S., Europe, and Latin America since our inception in 1986. I have personally helped close to 50 congregations since coming on staff in 2010. The need is great! People want to connect with others where they can be themselves. People want authentic relationships. People need Jesus. We help provide all of these for our families and our local church bodies,” Aaron Scheffler, the Executive Director for Mark 2 Ministries, shares.
10 Special Needs Living • February 2022
Aaron specializes in solution-focused Biblical counseling, life and relationship coaching for individuals, couples, and families, as well as consulting and training church leaders. He has been an ordained minister since 2011 most recently serving as the Family Pastor at a church in Central Indiana. Aaron describes himself as, first and foremost, a servant of the Lord Jesus. He is also a husband to Debra and a father to Jeremiah and Eli. He loves serving at his local church, dating his wife, and playing with his boys in his free time.
Mark 2 Ministries 4 Key Initiatives: 1. Coaching churches and their leaders through intentional mentoring and training to launch and support disability ministries. They also coach families in ways to strengthen and grow their relationships. 2. Consulting with churches on accessibility and programming for those with disabilities. 3. Collaborating with churches through championing the Disability Ministry Connection. The DMC meets quarterly to provide training, resources, and encouragement to anyone involved in disability ministry at their local church. 4. Counseling individuals, couples, and families through life’s challenges by using Biblical principles to highlight the desired path. About: “Due to COVID, we haven’t conducted a training session since late 2019. We’re still waiting for churches to re-open and welcome
new ministries like ours. We pray it happens soon. This inability to work with churches in the present environment is what led us to launch our counseling division on October 1, 2021. This new division allows us to go directly to families within the special needs community without needing “permission” from a local church. This new division conducts Biblical-based counseling sessions for individuals, couples, families, and groups in our office in Fishers. Needspecific support groups are a part of this offering as well. We have also just signed an agreement with Right Now Media to provide access to more than 20,000 Bible study videos, podcasts, and other content for our families,” Aaron explains. Mark 2 Ministries works with church staff and volunteers behind the scenes. Aaron states, “We equip churches to love people who are different from the typical. One of the most fun things we teach churches to do is to throw a respite party. Kids and/or adults with various needs would come to a church for 3-4 hours to have fun while the parents/caregivers get a break to do whatever they want. It’s an awesome
time! We play games, sing songs/karaoke, watch movies, eat dinner... whatever it takes to have fun. “Disability” is left at the door, and fun takes over! It’s an awesome time!” There are no testimonials to share from families, as all of the counseling work is private and confidential. Aaron shares, “If there are people who desire to see a ministry geared toward families within the special needs community at their church, are seeking Biblical counseling, want to start or get plugged into a support group and/or Bible study, they can reach out to me for info.” Supporting Mark 2 Ministries: 1. Tell someone you know about what we do! 2. Reach out to your local church to see if they would like to start this type of ministry. 3. Go to www.mark2ministries.org to donate.
Offering free or for-donation Biblical Counseling and Relationship Coaching for families within the Special Needs Community. Coaching - Consulting - Collaborating Follow us on Facebook for exciting updates @mark215
February 2022 • Special Needs Living
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BASTET CAT CARE & SITTING
Accommodating all feline family members including special medical & behavioral needs. Teaching and Giving Injections, Medication, Nail Trims and Minor Grooming,Vet Transports, Cat Sitting
Owner AJ Gegenheimer, RVT Bonded & Insured with Pet Sitters Association
(317) 919-1948 | bccs95@gmail.com Serving the westside of Indianapolis, Avon, Brownsburg, Plainfield, Zionsville
David G. Yearwood, CFP® Vice-President
Helping People Make Smart Choices About Their Money for the Reasons That Are Important to Them • Creating your financial road map and providing guidance through life’s transitions • Celebrating 35 years of serving clients at Charter Advisory Corporation • One of only 29 recipients to have been named an Indianapolis-area Five Star Wealth Manager award winner each year since 2012 Working towards the realization of your dreams is paramount in our relationship with you. The process of understanding your current financial situation is vital in making prudent decisions towards your future goals. We will walk with you, with experienced guidance, toward your financial destination. 250 E 96th Street, Suite 200 • Indianapolis, IN 46240 • Phone: 317-844-7416 dyearwood@charteradvisory.com • www.charteradvisory.com
2012 - 2021 winner David G. Yearwood, CFP
12 Special Needs Living • February 2022
R
Your Dream Makers Team. Making Your Real Estate Dreams A Reality!
Branch Manager, CRS, GRI
Branch Manager, NMLS # 664589
317-658-5240 317-413-5311 www.facebook.com/YourRealtorJeremy jpage@callcarpenter.com
www.yourrealtorjeremy.com
811 W. Main Street Suite 210, Carmel, In 46032 Branch NMLS #33041
HardWorkingMortgageGuy.com teamripma@advisorsmortgage.com
Years of SOLD
Contact Kristin Richards Today!
317-698-5264 | teamrichards25@yahoo.com
A.C.E. Is Growing Exceptional Learners From The Ground Up! We recognize that every individual with Autism is unique in terms of his or her challenges and strengths. Whether you are a family who has just received an Autism diagnosis, you have an older child in the later stages of treatment, or anything in between, ACE will create an Applied Behavior Analysis (ABA) therapy program that will work for your child and your family. IN HOME & CLINIC-BASED SERVICES In-Network With Most Insurances
www.autismenrichment.com (317) 436-7080 | info@autismenrichment.com February 2022 • Special Needs Living
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local events Important Note: Prior to attending any events please be mindful of any COVID-19 restrictions. Please review the state mask covering executive order. There are exemptions within the order that include children under 2 years of age should not wear a face coring due to risk of suffocation; and any person with a medical condition, mental health condition, or disability which prevents wearing a face covering. Since COVID-19 is still among us there is a possibility that the events listed and places to go could be canceled, rescheduled, or closed. Please confirm event status and below listed details before going from the contact info provided below in case-specific event details have changed since posting. Note: Don’t forget to apply for the Access Pass! The Access Pass Program allows for families that meet the specific requirements listed below to visit the Children’s Museum and all participating locations for $2 per family member per visit, for up to two adults and all dependent youths living in the household. Qualifications include the following: - Hoosier Healthwise Insurance (Indiana’s health care program for low-income families, pregnant women, and children) - SNAP (Supplemental Nutrition Assistance Program - TANF (Temporary Assistance for Needy Families) Apply Here: https://www.childrensmuseum.org/visit/hours/access-pass
14 Special Needs Living • February 2022
MUSEUMS Children’s Museum of Indianapolis Various events from February 1st-March 18th Starting at 10:00 am 3000 North Meridian Street Indianapolis, IN 46208 317-334-4000 https://www.childrensmuseum.org/visit/calendar?date=01/08/2022 Conner Prairie-Indiana’s Living History Museum Various events through Feb. In 2022 the second Sunday of every month from 10 am-12 pm will be Sensory-Friendly Hours. Admission is free, and all of the grounds will be open. 13400 Allisonville Road Fishers, IN 46038 317- 776-6000 http://www.connerprairie.org/ Newfields Museum Wee Wonders Virtual Storytime and Art Every Friday at 10:00 am FREE For more information email weeWednesdays@discovernewfields.org SPORTS Indiana Pacers Feb. 2, 4, 11, 13, 16, 25, 27 Various start times Bankers Life Fieldhouse 125 South Pennsylvania St. Indianapolis, IN 46204 317-917-2727 https://www.nba.com/pacers/schedule
Indy Neurofeedback is Changing Lives! Do you or someone you love suffer from ADHD, Anxiety or Autism? Let Us Help You Explore Your Options.
Neurofeedback is a non-drug, non-invasive solution to symptoms related to brainwave dysregulation. It's natural and offers a fix to the problem, not just a bandage that masks the symptoms.
Is there a local event for the Special Needs community you would like us to promote in an upcoming issue? Email us at SpecialNeedsIndy@n2pub.com.
Events provided by : Brittany Lowe Event Executive
FAMILY NIGHT The Studio Movie Grill 3535 W. 86th St Indianapolis, IN 46268 317-315-8113 Has sensory-friendly screenings of movies! Check the website for movies and times https://www.studiomoviegrill.com/movie/ special-needs-screenings
"We followed the same path most of the other autism parents do with GFCF, DAN Dr., supplements, HBOT. What really made a difference in our son’s attention span, executive processing skills, and anger management was neurofeedback through INDY Neurofeedback and Leanne O’Neil." ~Maria S. (parent)
Schedule a consultation today! 8801 N. Meridian, Suite 306, Indianapolis, IN 46260 (317) 888-8500 • www.indyneurofeedback.com
THE ARTS Beef and Boards Shear Madness Dec. 28th-Feb. 5th Kinky Boots Feb. 10th -Mar. 27th 9301 Michigan Rd. Indianapolis, IN 46268 317-872-9664 https://www.beefandboards.com/Online/default.asp Jubilate Choir Butler University, Lilly Hall Room 133 Wednesdays, 6:45 – 7:30 pm Director: Lauren Southard Start Date: September 22, 2021 For more information, contact Lauren Southard at 317.940.8065 or lsouthar@icchoir.org Gigi’s Playhouse “I have a voice” Gala February 19, 2022, 6:00 pm Indiana Roof Ballroom For tickets https://one.bidpal.net/ indianapolisgala2021/ticketing(details:ticketing-summary)
YOUR CHILD DESERVES TO REACH HIS FULLEST POTENTIAL AND BECOME A VALUABLE PART OF HIS COMMUNITY
Looking for physical, occupational, or speech therapy for kids? Choose a family-friendly therapy center that makes parent education a priority. According to the Center for Disease Control, 15% of children between ages 3 and 17 have encountered some form of a developmental delay.
Is your child developing at the "right" pace? REQUEST A CHILD DEVELOPMENT EVALUATION TODAY! WeeSpeak Lafayette • 765-446-8300 35 Executive Dr, #5 • Lafayette, IN 47905 weespeaktlc@gmail.com • weespeaktlc.com February 2022 • Special Needs Living
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HEART SOS Services for Individuals & Families
Hope, Love, & ASD: Building Skills for Life Want more confidence? Mental Health Counseling can help you get unstuck.
What to go on a dinner date? Occupational Therapy can help you dress to impress.
Want to advocate for yourself? Speech Therapy can help you communicate your needs.
Want to try new things? Behavior Consultation can help you become more flexible.
Heart of the Spectrum Outpatient Services
A New Service Model by The Hope Source
We hear your SOS!
Reach out today at asdheartsos.com 7739 E 88th Street Indianapolis 46256 1318 Ohio Street Terre Haute 47807 16 Special Needs Living • February 2022
Therapeutic Education for ASD Our mascot, the dragonfly, represents the mission of our model perfectly. The dragonfly symbolizes change, adaptability, self-realization, emotional depth, and lightness. Not only can it quickly adapt to it's environment and change it's course, it does so with confidence. We aspire to be like the dragonfly in our journeys of personal growth, even when it seems impossible. The dragonfly has so much strength; it can fly through a storm. Our mission is to help our clients and students with ASD gain knowledge that will build competence in social, academic, and vocational areas of their lives. With dynamic skills they can navigate any challenges they encounter with confidence, just like the dragonfly. -Julie Gordon
BE A DRAGONFLY. ENROLL TODAY. 8350 Craig Street Indianapolis, IN 46250 317.578.0410 asdhopesource.com dynamicmindsacademy.org
ABA, the Natural Way
A developmental, coping, & executive function skills-focused approach to behavioral therapy like no other ABA provider in Indiana. Schedule a tour at
asdhopesource.com • Behavioral Therapy (ABA) • Mental Health Counseling • Speech Therapy • Occupational Therapy • Diagnostic Testing • Special Education Support • Family Guidance Counseling & Workshops • Group Therapy & Specials • Music Therapy • Art Therapy • Recreational Therapy with Fitness Focus • Vocational Development at Hope Source Cafe • Monthly STEM Projects & Expos
Grow Your Own Way. Imagine no longer having to fight for your child's needs at school!
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Dynamic Minds Academy was founded to ensure that every support for ASD is built-in. Low Ratios • Low Stimulation Year Round Calendar • Built-in Accommodations Support Services • Highly Qualified Teachers Individualized Paths • Balanced & Flexible Curriculum An Innovative, K-12, Free Public Charter School Specializing in Educating Students with Autism Spectrum Disorder
Enroll today at dynamicmindsacademy.org February 2022 • Special Needs Living
17
By Sheila Wolfe IEP Services
THE ABCs OF IEPs EXTENDED SCHOOL YEAR (ESY) SER VICES Although we have barely started the new year, it is time to plan for the summer. Determining if a student has the need for extended school year (esy) services is complicated and often a point of extreme disagreement for the case conference committee. Parents need to know the factors in deciding if a student needs ESY and how to best advocate for their child’s right to these services.
Do you need help getting your child with special needs the services they NEED and DESERVE at school? Professional Parent Advocate with 20 Years Experience Specializing in Developing IEPs that WORK Experienced in All Disability Categories Autism Expert Helping families receive a meaningful education for their children in public schools
IEP IEP Services, Services, LLC LLC Integrated Educational Programming
Sheila A. Wolfe Special Education Consultant
sheilawolfe@sbcglobal.net Please email for more information.
18 Special Needs Living • February 2022
ESY services are intended to prevent students with disabilities from losing important progress made during the typical school year and maintain skills vital to achieving progress during the upcoming school year. Evaluating and determining if a student qualifies for ESY is the responsibility of the case conference committee (CCC). It is important to remember that parents are equal members on the CCC, and the school cannot dictate if a student will receive ESY or not and what services will be provided. In other words, it is not appropriate for the school to announce at a CCC meeting that the school provides an “enrichment program” to its students with disabilities during the summer months and the parent can choose to send their student to this program or decline the services. ESY services must be individualized based on the needs of each student. Parents can access Indiana’s technical assistance document on determining ESY services at: https://www.doe. in.gov/sites/default/files/specialed/technicalassistance-document-determining-need-extendedschool-year-services-draft.pdf In this document, the following factors have been identified by the courts as being relevant to the determination of ESY services: a. Critical learning needs b. Degree of progress on IEP goals c. Least restrictive environment (LRE) d. Independence from caretakers e. Emerging needs and/or break-through learning opportunities f. Regression and recoupment g. Interfering behavior h. Severity of the disability i. Special circumstances Each of these determining factors is somewhat subjective and hard to support with raw data. However, as discussed in past articles, appropriate progress reports and data collection on goals is vital to helping the CCC determine ESY services. Briefly, we will review the most common supporting arguments for establishing ESY services. REGRESSION AND RECOUPMENT is often the focus of schools when looking at the provision of ESY services. ALL students lose a certain percentage of skills over the summer. Schools should be testing students each year when they return to school to determine an academic baseline of skills. In addition, these academic assessments should be administered around the end of the first semester and the end of the school year. Parents should carefully analyze these assessments to calculate the degree to which their student regresses in skills over the summer. Data is available from each school on the “typical” degree of regression for the student population
and the amount of time it takes an “average” student to recover lost skills after returning to school. If a student with a disability loses more skills and/or takes longer to recover these skills than the “typical” student, an argument can be made that ESY services are needed to prevent this from happening. EMERGING NEEDS/BREAK-THROUGH LEARNING OPPORTUNITIES is another important factor in establishing the need for ESY services. If a student is acquiring new academic, communication and/or behavioral skills that are critical to continued progress, ESY services should be utilized to make sure these skills are maintained. This is often the only way a student with significant needs can master emerging academic skills, and/or retain behavioral and communication skills. DEGREE OF PROGRESS ON IEP GOALS or the lack of progress on IEP goals is an important consideration when discussing ESY services. Perhaps the school was using an ineffective methodology to educate a student in math and the school has only recently found a methodology that is effective. It would be important to “recover” the lost educational opportunity during the summer so that appropriate progress can be made. There are many different scenarios that fall under this umbrella, and it is one area that lends itself to data analysis to make the determination.
Special Needs Planning & Elder Law Attorney
Here to help you put plans in place to give you peace of mind. Elizabeth A. Homes is a special needs planning and elder law attorney. She has been licensed and practicing law since May of 2014. Her practice at the Law Office of Elizabeth A. Homes LLC is focused on Special Needs Planning, Guardianships, Elder Law, Estate Planning, and Probate Work. This includes Wills, Powers of Attorney, Advanced Directives, Trusts, Trust Administration, Medicaid Planning, Special Needs Planning, Guardianship, and Probate. She is admitted to practice law in the State of Indiana. We ask "What If?" so you don't have to ask "What Now?"
INTERFERING BEHAVIOR is a factor that is extremely important in the discussion of the need for ESY services. Many students with special needs have behavioral issues that the CCC has struggled to address often for many years. Once a student has a successful behavior intervention plan (BIP) or has achieved increased compliance which allows the student to make progress, it is absolutely essential to maintain those skills over the summer so progress can continue the following school year. It would be inappropriate to “start over” each year trying to address maladaptive behaviors when the student is being successful with their BIP. Keeping the student on a schedule of attending school and complying with school personnel (even if that schedule is modified) will allow the student to continue to make progress. ESY services are a challenging topic for most CCC. Parents need to understand the purpose of ESY, and the criteria used to determine if ESY is appropriate. The list provided here is not exhaustive. Every child is unique, and parents can advocate based on any need their student has for continued services over the summer. Schools cannot arbitrarily limit services, or the criteria used to determine eligibility for ESY services. The link provided in this article will assist each parent in preparing to advocate for their student. Because this process can often take more than one meeting, it is important to start the discussion early. The CCC should meet no later than late March to begin this process.
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February 2022 • Special Needs Living
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By Paul Hathcoat
MEET THE
NEWELL FAMILY KALA, ROBBIE AND JAX
Our kids can bring the best out of us and for Kala and Robbie, their son, Jax, has done just that. At just 18 months of age, Jax was diagnosed with SPD (sensory processing disorder) after they noticed that he was having issues with textures and had become averse to water. This diagnosis has led to a string of other diagnoses that Jax and Kala have been successfully navigating these last six and a half years later. Meet Jax, Kala, and Robbie. Kala is currently a student in the master’s program for psychology with a concentration in forensic psychology at Purdue University. Her undergrad in Psychology for ABA has prepared her well for the challenges of raising a child with disabilities. Jax was diagnosed with ASD (autism spectrum disorder) at age 2. Kala began the journey like most parents raising a child with a disability, by seeking the best and
22 Special Needs Living • February 2022
most appropriate therapies, placements, and educational settings for her son. One of those places that has been a blessing to Jax’s life is K1ds Count Therapy in Brownsburg, IN. Kala says, “when receiving our intake at K1ds Count, we discovered Jax could read!” He was shortly thereafter diagnosed with speech apraxia. This condition is when children have difficulties making accurate movements when speaking. The K1ds Count team and support though, has interceded for the Newell family and after adding a LAMP (Language Acquisition through Motor Planning) device, Jax has progressed to the point that he is now able to speak in “intelligible and non-intelligible sentences” and communicate. Kala is quick to thank these advanced therapies and service centers for interceding in the life of her son and giving them the ability to communicate and continue to develop, together. Like so many of us who are or have raised young ones, Kala and Robbie have had to stay on their toes with Jax at times. After telling us that Jax “used to elope” and would run across, on, and around main roads and intersections... He has even had the chance to meet the local police force while running down a main town road before. Jax has been known to visit different neighbors and even
different neighborhoods which is why Kala invested in Project Lifesaver where Jax is now “registered in three counties.” For those that might be unfamiliar with this program, Project Lifesaver outfits individuals with a small transmitter on the wrist or ankle that emits an individualized frequency signal and notifies caregivers and agency authorities when they are on a walkabout. This program and technology have the potential to bring safety and peace of mind to families and loved ones of those who are at times, unpredictable in their wanderings. Overall, Kala, Robbie, and Jax have adapted well to his disabilities she reports. They spend their summers swimming with Jax’s mamaw and papaw, Mimi, and Aunt Coco and weekends on the farm with his Grandma and Grandpa. Jax loves Burger King, but only because Jax has a “limited
food preference” list. They listen to the Trolls soundtrack and even a little Queen, Beatles, or Elton John, depending on their vibe that day. They are persevering together, surrounded by quality therapies and therapists, advocates, and case managers. Kala has also turned her experiences into benefits for other children out there by recently working with other kiddos with Developmental needs who are preparing for kindergarten. Kala would like to leave our readers with this message that she has learned through her own experience; “Self-help for mental health is just a must-have. Coming from a psych student, I am not one to attend therapy sessions, per se, but having a non-biased party to help work through any problems I am having, or even just listen, is so helpful.” We thank you, Kala, Robbie, and Jax, for giving us all a peek inside your journey. Blessings to all of you out there working hard every day to figure it out!
Photo credit: Liz Kaye Photography
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317-748-0034 braincenteratgeist.com February 2022 • Special Needs Living
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By: Aaron Olson Photos by: Buonanno Photography
MEET THE
SHORT FAMILY TAMMY, PHILLIP, AND LEEANN
26 Special Needs Living • February 2022
T
ammy Short lives with her husband, Phillip, and her daughter, LeeAnn, in Fishers, IN. LeeAnn is 21 and has autism spectrum disorder (ASD). Tammy and LeeAnn are originally from Washington County Indiana, and lived in several counties across the state before settling in Hamilton county five months ago. Along the journey, Tammy met Philip, and, despite the numerous challenges associated with being the parent of a special needs child, Philip stepped up and assumed the role of LeeAnn’s father. Tammy and Philip have been married for the last 12 years. Tammy’s background is in nursing, and, like many parents in the special needs community, currently works as a direct support staff taking care of 40 of the 60 hours of services LeeAnn receives weekly. LeeAnn’s ASD symptoms are problematic to say the least and this causes a great deal of hardship to the family. To start, she is self-injurious, and due to numerous incidents, it is difficult to enroll LeeAnn in many of the camps, schools, and programs available to other special needs parents. What is particularly sad about the situation is that LeeAnn is not intentionally self-injurious and she’s not dangerous to others. By all accounts, LeeAnn is friendly and sociable. She enjoys meeting new people and asking them “when’s your birthday.” The self-injury is usually the result of her inability to effectively communicate. While she’s still subject to many of the different ticks and “meltdowns” typically associated with ASD, Tammy wants people to be aware that LeeAnn is a total sweetheart who means well. Unfortunately for the family, LeeAnn’s ASD is fairly severe, and, due to her overall kind nature, Tammy is finding it difficult to find her the care she deserves. To put things plainly, LeeAnn needs 24/7 professional care. When they go out, Tammy
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needs to take the same precautions as would be necessary for an infant — hand wipes, alcohol for the restroom, etc. Tammy says she has looked into every option available so that she doesn’t feel like she’s being completely drowned by the workload presented by having a special needs child. Tammy wants other families who are in the same position, spending every waking moment providing care for their special needs child, to know they are not alone. Tammy’s finding is that there is limited awareness of issues and limited adequate assistance. State-run institutions are simply inadequate for LeeAnn and their care providers at those institutions simply do not have the necessary qualifications or passion to provide LeeAnn with the level of nurture and engagement she would require. One of Tammy’s hopes in submitting her story is to raise awareness of the inadequacies of state assistance and maybe stimulate a dialog sufficient to bring about some
much-needed legislation. This is not the end of Tammy and LeeAnn’s story, Tammy is still researching solutions and applying to have LeeAnn enrolled in various programs, but the outlook is bleak as the more “quality” programs exclude LeeAnn due to her past instances and the programs that accept her do not offer adequate care.
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“Let Me Be Brave in The Attempt”
MEET DORIE ZIPPERLE By Dorie Zipperle
I would like to take this opportunity to introduce myself and tell you about how the Special Olympics has positively affected me and millions of others like me, in Indiana and around the world. Special Olympics participants are called Athletes. Some of us are more athletic than others, but we all compete in at least one sport throughout the year. That competition is what brings us all together and binds us to one another. My sports have included 3x3 basketball, bowling, corn toss, track & field, snowshoe racing, volleyball, and most recently golf. I’m better at some of those sports than others. Sometimes I win medals…sometimes I don’t. The Special Olympics athlete oath, recited before every competition, says: “Let me win. But if I cannot win, let me be brave in the attempt.” It’s an important reminder that, as much as we all love to win, the opportunity to compete and learn and try our best at something should not be taken for granted. And Special Olympics athletes must be brave in everything they attempt. Most everyone knows that opportunities are harder to come by for people with intellectual disabilities. Instead, we often find obstacles wherever we go.
They used homemade games, flashcards, silly songs, or poems, or whatever it took to help me learn and retain and relate schoolwork to real-world issues. I remember sitting for many hours at our kitchen table.
When I was in elementary school, the ‘expert’ counselors said that I would never learn to do math or to read beyond a fifthgrade level. I also suffered from severe seizures until I was in middle school, and like a lot of kids with differences, was bullied and humiliated at times. It was very difficult to even hold my head up at times. But sadly, my story is not unique. Approximately 6.5 million people in the United States have an intellectual disability, and as many as 200 million worldwide. Nearly every one of them has experienced some form of discrimination or another challenge in their life.
And it worked!
But I am one of the lucky ones because I have a family that has supported me and helped me work to overcome those obstacles. My parents, Robin, and Brian, have always believed in my abilities and challenged me the same way they challenged my older siblings — Nicholaus, Katie, and Chris. They understood that sometimes my learning process takes a little longer. If it takes you an hour to learn something, it might take me all night. Special education was recommended, but my parents didn’t think I really needed it. So, when I was young, they were my tutors.
I was an adult by then. I had graduated from Our Lady of Providence High School and was working on the first of two associate’s degree at Ivy Tech in Sellersburg. But losing Chris left a hole in my life that will never be filled. I was devastated, of course, but I was also lonely. And eventually, I started to feel like I wanted to meet some new people.
30 Special Needs Living • February 2022
By the time I reached high school as a 16-year-old freshman, my life was fairly normal. I played sports, I got good grades, and I had some friends. My best friend was my brother, Chris, who was two years older. Chris always looked out for me and made sure that I was involved in social activities. And as much as I appreciated it at the time, it wasn’t until he passed away tragically in 2014 that I really understood how important that social interaction was to my life.
So, in the fall of 2017, when I was 28 years old and finishing my second college associate degree, I became a Special Olympics
athlete for the first time. And immediately, I found what I was looking for. As a member of the Indiana Special Olympics ClarkFloyd counties program, I have met a lot of fantastic people in the last four years, including athletes, coaches, volunteers, and families. Many of these people are already life-long friends. I started with bowling, a sport that I was fairly good at; but honestly, I never thought I would be selected to go to the state tournament or to do anything much beyond my local Special Olympics program. Well, I was wrong about that. As I got more involved, I discovered that Special Olympics sports are not just about rewarding those who are best at something. Special Olympics is about inclusion. And through sports, Special Olympics provides opportunities for everyone to do their best and to compete against others of similar abilities. So, I did get to go to state, where I met even more great people. And in 2019, I had the honor of representing my county program at the annual Special Olympics, U.S. Bowling Conference (USBC) in Las Vegas. My mom was my Unified Partner, and I’m proud to tell you that we brought home the gold for our division. That was a great experience, and the opportunity to compete at the national level really meant a lot to me. But some of my favorite experiences with Special Olympics have come during practices or smaller events, where I get to meet new people and help new athletes find their place. Helping people really makes my day, and I often think of Chris in those moments, because I know it would have made his day to be involved as a volunteer.
I also enjoy being a part of Special Olympics Indiana’s Athlete Leadership University, which empowers athletes and provides opportunities for us to learn and grow outside of sports. As a technology major, I’m learning some new skills and will be starting a podcast in early 2022 so I can help even more people feel connected. Outside of Special Olympics, I lead an active, busy life. I work for Goodwill of Central and Southern Indiana, and I have a lot of fun giving fashion advice to customers. I’ve made a lot of friends there and frequently get to see several people I know from our community. In the last 11 months, I’ve gone from part-time to full-time, helped in training new associates, and have been selected as employee of the month twice! But I’ve always loved photography and art; in fact, I have my own company called DMZ Lasting Impressions. I would eventually love to work with animals. Goodwill is a great place for me to be right now and provides the flexibility to work around all my Special Olympics practices, competitions, and conferences. But thanks to the support of my family and the Special Olympics community, in helping me to see the bravery in myself, I see a future filled with possibilities, including living in my own house and launching my own business. And thanks to people like you, I know the future is bright for thousands of other Special Olympics athletes across the state. February 2022 • Special Needs Living
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You deserve an agent that is supportive, understanding, and compassionate. Nicole Lyon is here to guide your family with your real estate needs, every step of the way.
I am proud to serve the special needs community. My career is Real Estate my PASSION is helping others with their goals and dreams. I am humbled and honored to work in the real estate industry. I am committed to earning your trust and loyalty through my superior professional care, concern and communication. I am personally committed to each and every client, investing my time, energy and real estate market knowledge to ensure that I exceed your expectations at every level. I have a true passion and love for helping others, it's my ministry. Some of my strongest attributes are patience and genuine care. I work FOR you making sure that every decision made is in YOUR best interest. I welcome the opportunity to learn about you and your family and how I can best serve you.
Call me today at 317.501.0639 32 Special Needs Living • February 2022
NICOLE LYON
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pastor’s corner By Paul Hathcoat
LESSONS LEARNED In my time as a “Special Needs” pastor, I have worked hard to educate the church, its people, and the community around it regarding how my team and I can teach individuals with disabilities about the Bible and develop their faith. We take appropriate pride in our efforts to do just that. Do we, and do you, take the time to step back and learn from those individuals with special needs also though? Let’s talk about that, from a pastor’s perspective. Some of my students struggle to process the world and its happenings around them. Many of them have an inability to process certain specific sensory inputs that they are presented with. As I have learned, this can be a positive thing. Sin is a specific kind of sensory input to all of us. It can affect us in many ways. From holding us back from experiencing the fullness of life around us to making it nearly impossible to function, sin has a way of stirring us up inside and producing a product that is neither focused or dedicated to living righteous and Godly lives. We read in the book of 1 Corinthians, “no testing has overtaken you that is not common to everyone. God is faithful, and he will not let you be tested beyond your strength, but with the testing he will also provide the way out so that you may be able to endure it” (1 Cor. 10:13, NRSV). All individuals with disabilities struggle with the world around them in one way or another. You and I join all of humanity in this as well when it comes to the sensory input of sin. Many of the SN students at my church must try really hard to work well, communicate well, and get along with the typical students and volunteers around them. When they do, our classrooms work well, and our lessons bring life, love, and connection. It does not always work out that way though. We can all relate to this struggle to not only get along with, but to connect and team up with everyone around us. But this is part of God’s plan. In Ecclesiastes 4:9-10 we read about this idea. “Two are better than one. They can help each other in everything they do. Suppose either of them falls down. Then the one can help the other one up” (Ecc. 4:9-10, NIRV). I have
learned from my friends with disabilities that it is always worth the effort, no matter how difficult, to learn to work well with and love on those around us. Lastly, I want to share one of the most powerful lessons I have learned from my students. Said plainly and with humble honesty, I am distracted, lazy, unfocused, and unhealthy when it comes to the routines and disciplines that I know would benefit me daily. Many of the people living with disabilities that I have spent time around work hard to develop and maintain a routine in their life. I see many of my friends and students keeping track of their appointments, their medications, their therapies, their eating schedules, their exercise regimens, their TV schedules, and even their church services, religiously (pun intended). Some of them couldn’t imagine any deviation in their plans because it disrupts their prescribed flow through life that works best for themselves and their continued development. Do we do that ourselves? Do we create a routine of exercise, healthy eating, social connectedness, prayer, and Biblical study? Do we maintain a pattern of activity that promotes the things in our lives that we know to be most essential for our highest optimal function and development? I can’t say that I do, even though I really want to. I have learned from my friends with disabilities that these things should be non-negotiable vital aspects of our lives and that we should feel angst and discomfort when we DON’T do them. “A person without self-control is like a city whose walls are broken through” (Prov. 25:28, NIRV). God has called us all to healthy habits and routines in our lives. We can learn from just observing many of those around us who cling to their daily routines with passion. These are but a few of the generalized lessons I have learned in my time as a pastor and man. I am thankful for the countless examples that I have received while shepherding a special needs ministry. If you have some lessons learned as well from a child, friend, or acquaintance living with disabilities, please take a minute to reach out to us here at SNLM. May you be blessed by these lessons and by His word.
Do you have a thought, idea, or information that you would like to see in this section in an upcoming issue? Email Paul Hathcoat – phathcoat@wrcc.org.
February 2022 • Special Needs Living
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Some accomplishments and milestones take years ... We want to recognize you/them! Are you or your child celebrating a birthday, milestone, achievement, or accomplishment? We want to recognize you – email us at SpecialNeedsLivingIndy@n2pub.com.
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Do you run a business that supports the Special Needs Community and are looking to advertise and support the Special Needs Living magazine email: Jamie.McCabe@n2pub.com.
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Do you have Special Needs and run a Business? We will highlight all those with special needs who run a business for Free – email us or go to Linktr.ee/ Community.Stories and click on (Special Needs Living – Business Profile Q&A).
Each month we will highlight a nonprofit for free to let the community know more about how they support and impact families and individuals with special needs. Do you run a non-profit or know of one that supports the special needs community? Email us at SpecialNeedsLivingIndy@n2pub.com.
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save the date
SPECIAL NEEDS LIVING
B O W L I N G D AY AT PINHEADS
We invite you and your family to join us for a fun afternoon of bowling at Pinheads! February 12th, 2-5 pm Pinheads 13825 Britton Park Rd., Fishers, IN 46038
To Register Scan the QR code below or click this link https://www.eventbrite.com/e/ special-needs-living-bowling-daytickets-230070726737
Come out and enjoy a fun afternoon of bowling with other families in the special needs community! There will be a variety of families in the community from those who have never bowled before to those who are very experienced. You will get to enjoy bowling with other families and individuals with special needs, build relationships and have some fun bowling. Space is limited please RSVP. We look forward to seeing you there.
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38 Special Needs Living • February 2022
February 2022 • Special Needs Living
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By Jackie Guglielmo-Executive Director
THE INDIANA EDUCATION SCHOLARSHIP ACCOUNT (INESA) PROGRAM Office of the Indiana Treasurer of State
with the program. Current non-public school students can apply to participate in the INESA program as long as they meet the eligibility and income requirements. The non-public school that will be accepting payments through the INESA account must apply and be approved as a participating provider. A student may choose between an INESA account, or participating in the Choice Scholarship Program, but may not qualify for both in the same school year. The Indiana State Treasurer’s Office is excited to announce its newest initiative, The Indiana Education Scholarship Account (INESA) Program, established just this year. Its mission is to provide Indiana’s students access to the educational environment that best meets their learning needs by granting eligible students with scholarship money that may be used for pre-approved educational programs, therapies, services, tuition and fees, and other expenses related to the student’s education. At this time, a student must meet the following criteria to be considered eligible: a student with disabilities for whom an Individualized Education program (IEP) or Individualized Service Plan (ISP) has been created, have primary residency in the state of Indiana, meet the income requirement of 300% of the Federal Free and Reduced Lunch income level, and be between the ages of 5 and 22 years old.
Once students have applied and are approved to participate in the program, they will have an account established that will contain 90% of their tuition support dollars. In addition, however, families who opt not to receive special education services through either the public or nonpublic school would also be entitled to 100% of their child’s state special education dollars. This may afford families the flexibility to further customize their child’s educational experience. Funds will be deposited into individualized accounts in quarterly disbursements throughout the year. The ESA account may be accessed solely via an online portal, through which parents or students may log into to initiate payment for services provided. Debit cards will not be distributed and reimbursements for payments made with personal debit or credit cards will not be issued.
A student may not be enrolled at a traditional public or public charter school during the year in which they are using an Education Scholarship Account. However, an eligible student with an ESA may use funds to purchase services from a traditional public or public charter school, such as courses, if the school has applied to participate
Families can look forward to a variety of potential providers who are also able to apply to participate in the INESA Program, including non-public schools, tutors, service providers like mental health counselors, occupational therapists, speech and language pathologists, and board-certified behavior analysts, just to name a
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few. They may also use the funds to pay organizations that offer courses, programs, or camps that meet the needs of eligible students. These participating providers may be paid for pre-approved educational expenses. Qualified expenses include tuition and fees at a non-public school, private tutoring, paraprofessionals or educational aides, educational courses, services or programs, fee for service transportation to and from an INESA approved provider, and fees for assessments and examinations. The INESA program is projected to launch in the 2022-2023 school year. For more information, please visit our website at www.in.gov/tos/inesa or email the Executive Director, Jackie Guglielmo at jguglielmo@tos.in.gov.
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making a difference
Maria SmietanaEditor and Writer
Meet
Shawn Fulton
with Self Advocates of Indiana (SAI) Nothing about Shawn Fulton’s life has been easy, but when asked where he gets his unwavering positivity and high-energy approach to his work, he’ll say “I don’t know, that’s just me. I always tell everybody anything is possible, but you are the one that has to make it possible.” Born in the 1970s in the humble industrial town of Marion, IN, Shawn grew up very poor. “We lived in a very small house and heated with a kerosene heater that sat in a corner and had aluminum foil behind it,” he recalled. At age 4, he fell down a set of stairs and, most likely, suffered a traumatic brain injury. He doesn’t know if he ever got a real diagnosis, but throughout his childhood, it became increasingly obvious that he had learning disabilities. Pinpointing exactly what those were and the resources to treat them were still out of reach in most small school systems during the time he was growing up. At age 12, Shawn had his next near-death experience. While watching television during a thunderstorm he was struck in the face by lightning, which left him with a scar on his nose and permanent damage to his eyesight. That was on top of undergoing three kidney surgeries and three bladder surgeries, all before the age of 15. After he graduated from high school in 1992, Shawn found work with a water softener company and was doing fine
42 Special Needs Living • February 2022
until he fell victim to a Halloween prank that would change his life forever. The prank involved a dare to grab a butcher knife from another kid’s hand. Two of his fingers were nearly severed, and although they were successfully reattached, getting back the functional use of his hand would take a lot longer. During his recuperation period, he was placed in a sheltered workshop—agencies where people with intellectual and/or physical disabilities work in an enclosed environment doing simple, repetitive tasks. He couldn’t have known it then, but he would remain there long after he had regained use of his hand. In all, he spent 20 years of his life there, doing simple things like folding shipping boxes for Amazon or putting seed into bird feeders. But the agency would also be the place where Shawn would have his first encounter with people who would eventually open the door to a whole new way of life for him. “I got into Self Advocates of Indiana (SAI) by accident, really” he said. “I didn’t know anything about self-advocacy until Michelle Piercy and David Sprell got me to come to one of the local [SAI] meetings. They saw something in me that they probably shouldn’t have dragged out, because after that meeting, they never could get me to shut up,” he said with a wry chuckle. “I was very opinionated and back then, and I voiced my opinion in ways that I probably shouldn’t have. I actually owe them everything for where I am today, because
if I wouldn’t have gotten into the local self-advocates group and started advocating at the local level, I wouldn’t have been able to get to the state level.” Shawn’s first steps into self-advocacy were small, like asking his workshop agency to replace the old pop machines, which were always breaking down. “There was also a 3-4-foot-wide space between the door and the awning, which would fill with snow and ice [in the winter],” he recalled. “We wanted to make sure nobody would slip and fall going from the vans to the building, so we advocated to get the awning fixed. And then we got a lot of help [to] get a lot more stuff changed for the good at that agency.” It didn’t take Shawn long to go from working on self-advocacy projects to serving on the local SAI board. “I worked up the chain from sergeant-of-arms to vice president to president,” he said. I helped do fundraisers for community projects like tornado relief here in Indiana.” Once Shawn went to his first state-level self-advocacy board meeting, he says he was hooked. “I got into doing stuff with the state self-advocacy group and, oh, boy, it took off from there.” One of the first initiatives he worked on was My Life My Choice, “where we went into nursing homes to try and get people with disabilities out and help them to live in the community.” He would learn that disabled individuals were often dumped into nursing homes by their families, who couldn’t or wouldn’t care for them any other way. The initiative was stalled by the pandemic, but Shawn hopes it can resume this year. “Hopefully, we can get more people out of nursing homes that don’t need to be there,” he said.
their decision-making capacity by choosing trusted supporters to help them make choices. In general, much of SAI’s current work focuses on providing the disabled population with opportunities to live more autonomous lives and to prepare them for employment outside of the workshop setting. Along with that is an ongoing fight to eliminate so-called Section 14(c) certificates, which allow some employers to pay disabled individuals less than the minimum wage. Shawn is stalwart in his belief that anyone can work. “They just need a little push to get there or to find what they are passionate about,” he said. “The Arc of Indiana gave me a chance to shine, and I will never let them down. I’ll keep working until every person with a disability gets a job that pays minimum wage or more so they can live their best life.” The mission of Self-Advocates of Indiana / The Arc of Indiana is to advocate, educate, celebrate, and empower people with all disabilities to become more effective decision-makers, and have more independence, and promote employment for all. To learn more, visit www.arcind.org.
Opening doors for others soon left Shawn with two crucial epiphanies regarding his own life: “Self-advocacy at the local and state level helped me get to the point where I knew I didn’t want to be in an [agency workshop] anymore,” he said. “And I also knew that my dream job would be to work for the Arc of Indiana (SAI’s parent not-for-profit organization).” One of his key mentors was a woman named Betty Williams. “She and the founder of SAI, Darcus Nims, were my biggest influences because they were the ones that kept saying, ‘You can do anything you put your mind to,’” Shawn recalled. When Betty became ill and then passed away, it created the job opening that Shawn had dreamed of. “Now I go all over the state and talk to self-advocates about what is possible,” he said proudly. “I tell them my story, how I started out in the workshop and where I am today, working for the Arc, as the education and training coordinator. Since starting with the Arc, Shawn has worked on numerous projects, including Indiana’s Supported DecisionMaking law, which allows disabled individuals to retain February 2022 • Special Needs Living
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