living
Special Needs
December 2020
Indianapolis & Surrounding Areas
LISA MONGE & HER BOYS, BROCK AND BRODY
Inside: Navigating Special Needs Easterseals Crossroads Meet the Barrow Family 15 Ways my Daughter Lives in Color Sponsor Spotlight: Sheila Wolfe – IEP Services Sibling Perspective: Zach Elliott Pioneer Parents: Tom O’Neill Lucky Mama Project Local Events and More
CONNECTING - INSPIRING - EDUCATING - FAMILIES WITH SPECIAL NEEDS
2 Special Needs Living • December 2020
I M P O RTA N T
N UMBE R S 317-977-2375
317-257-8683
Arc of Indiana www.arcind.org
www.n2pub.com Turning Neighborhoods Into Communities © 2020 Neighborhood Networks Publishing, Inc.
AREA DIRECTOR PUBLISHER
Jamie McCabe jamie.mccabe@n2pub.com
ASK: About Special Kids, Inc. www.aboutspecialkids.org 317-232-7770
Indiana Governor’s Council for People with Disabilities (GPCPD)
800-609-8448
Autism Society of Indiana
877-241-8144
Blind and Visually Impaired Services (BVIS)
812-855-6508
Indiana Resource Center for Autism
800-545-7763
Bureau of Developmental Disabilities Services (BDDS)
317-233-1325
Indiana State Department of Health
844-446-7452 800-545-7763
Bureau of Rehabilitation Services (BRS)
Indiana Statewide Independent Living Council (INSILC)
855-641-8382
Indiana Works
800-332-4433
INSOURCE http://insource.org/
Deaf and Hard of Hearing Services (DHHS) DHHSHelp@fssa/in.gov 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
911
Emergency
844-323-4636
Family Voices Indiana www.fvindiana.org
800-545-7763
First Steps
574-234-7101
IN*SOURCE www.insource.org
317-232-0570
Indiana Department of Education: Office of Special Education www.doe.in.gov/specialed
317-233-4454
Indiana Family and Social Services Administration (FSSA) www.in.gov/fssa/index.htm
1-800-772-1213
Social Security Disability Insurance (SSDI)
877-851-4106
Special Education Questions
317-871-4032
United Cerebral Palsy Association of Grater Indiana
800-545-7763
Vocational Rehabilitation Services (VR)
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.
December 2020 • Special Needs Living
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Sponsor I N D E X Neighborhood
Thank you to all the below supporters who have chosen to support Special Needs Living Magazine, because of their support we are able to mail this to you free of charge each month!! They are delighted to help you with any of your needs. Please let us know if there is a company or organization that supports the Special Needs Community that you would like to recommend - Jamie.McCabe@n2pub.com ABA & COMPREHENSIVE SERVICES K1ds Count Therapy (317) 520-4748 ABA SERVICES Autism Center for Enrichment (317) 436-7080 Mindful and Modern ABA Therapies (317) 827-7777 The Indiana Institute for Behavior Analysis, LLC (317) 388-8131 ACCESSIBILITY PRODUCTS AMRamp (260) 519-0101 ASSISTANCE DOG Indiana Canine Assistant Network, INC. (ICAN) (317) 250-6450 ATTORNEY-WILLS/TRUSTS/ ESTATE PLANNING Law Office of Elizabeth A. Homes LLC (317) 660-5004 DENTAL CARE Children’s Dental Center (317) 842-8453
4 Special Needs Living • December 2020
FINANCIAL WestPoint Financial Group Gordon Homes (317) 567-2005 FUNCTIONAL MEDICINE Wholestic Nutrition (812) 320-9954 GYMNASTICS Body by GymRoots Studio (317) 579-9300 HEALTH & WELLNESS LifeVantage - Team Richards Kristin Richards (317) 698-5264 Ritello Clifton Herbert (661) 317-6157 INSURANCE: AUTO/HOME/LIFE State Farm Josh Fields (317) 875-0013 MOBILITY / ACCESSIBILITY CYA Mobility (317) 530-2541 NEUROFEEDBACK THERAPY Indy Neurofeedback (317) 888-8500
PEDIATRIC THERAPY Wee Speak (765) 446-8300 REGENERATIVE MEDICINE/ STEM CELL THERAPY Destination ReGen (317) 522-1980 SPECIAL EDUCATION CONSULTING IEP Services, LLC. Sheila Wolfe (317) 573-9610 SUPPORT SERVICES Easterseals Crossroads (317) 466-1000
publisher’s
note
Wow! Only a few more weeks left in the year, I just can’t believe it! I oftentimes spend the end of November through the end of December reflecting on the year. I know that is what January is for – a time to set goals and reflect, but I am always planning in advance and I, like many of you, take Thanksgiving to remember all that I am thankful for! There is so much to be thankful for even though this year for many of us has not been the year we were hoping for. Many of the things we have had planned to do, experiences we planned to have with friends and family have been canceled or pushed to a later date. Certainly, the struggle of working full time and managing young kids at home, including one with special needs, has not been an easy task. Yet aside from everything happening in the world today, I am more thankful than I have ever been before. I am so thankful for those who work directly with our son to help him master goals and targets. From a magazine perspective, there is so much that goes into this each and every month for you. I am thankful for the supporters who help to make this magazine possible. I am thankful to those who contribute stories, ideas, nominate others, and send photos. I am thankful for the ability to run events and connect the community together, and for the personal stories that give hope and inspiration to others and highlight those who deserve recognition. Since we are on the topic of being thankful, I would love to hear from you. Maybe someone has helped you during a difficult time or a neighbor, your spouse, sibling, co-worker, or friend deserve a public “thank-you.” Send us an email (maybe a photo if you have one) and share with us a bit more about that encounter so we can help recognize those who are doing good and helping others! Excited to hear all the ways you are thankful! You can email us at SpecialNeedsLivingIndy@n2pub.com.
Special Needs Living is designed for individuals with special needs and families who have a child with any type of special need, whether psychological, behavioral, emotional, or physical. Stories will largely be written by our readers. It is for you, by you, and meant to connect you. Oftentimes we can feel alone and isolated in the world we live in today. The stories shared here will give hope, inspiration, and encouragement, perhaps even shift your perspective. If you have a story you would like to share, you are welcome to email us at SpecialNeedsLivingIndy@ n2pub.com or check out our Linktr.ee/Community.Stories to view some of the story template options. Huge thank you to all the supporters helping to make Special Needs Living possible monthly. If you would like to be involved in any way, or for more information on how you can support or sponsor, please email me Jamie.McCabe@n2pub.com. You can follow us on our Facebook page: Special Needs Living magazine to view our monthly digital versions and to keep up with events, stories, and things we are looking to add to the magazine. We hope you enjoy the December issue of Special Needs Living. We welcome feedback and are excited to bring this new magazine and resource to you each and every month! Your Publisher, Jamie McCabe 248-882-8448 Jamie.McCabe@n2pub.com December 2020 • Special Needs Living
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MEET THE
Special Needs Living
TEAM
JAMIE MCCABE Publisher & Area Director
BRITTANY LOWE Event Executive
HEATHER GREGG Photographer 21 Vines Photography
LEAH PARKS Knightingale + Willow Photography
MARIA SMIETANA Editor & Writer
WRITER & CONTRIBUTORS
CARLA MILLER
DEANDRA YATES
ERIN BOAZ
PAUL HATHCOAT
ANGELA ARLINGTON
SHANNAN PENAFLOR
6 Special Needs Living • December 2020
LISA MONGE
SHEILA WOLFE
AARON OLSON
LAURA SPIEGEL
promotions
THIS MAGAZINE IS FOR YOU - BY YOU
TO SUPPORT & CONNECT YOU HERE IS HOW YOU CAN BE INVOLVED REFERRAL PROGRAM HAVE A STORY TO SHARE
Would you like to share a story in an upcoming issue of Special Needs Living, we want to hear from you – To share a story or to nominate someone else to be in an upcoming issue of Special Needs Living? Email us your story ideas or nominations to SpecialNeedsLivingIndy@n2pub.com. To view several story options with quick links or to answer questions and upload photos go to Linktr.ee/Community.Stories.
ACCOMPLISHMENTS/ ACHIEVEMENTS/MILESTONES LOOKING TO CELEBRATE ALL SPECIAL NEEDS INDIVIDUALS
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.
We have a referral program that pays a $100 bonus to anyone who personally connects us with a business or organization that chooses to support Special Needs Living. Please let us know if there is a company or organization that supports the Special Needs Community that you would like to recommend – Jamie.McCabe@n2pub.com.
CALLING ALL 501C3 ORGANIZATIONS THAT SUPPORT THE SPECIAL NEEDS COMMUNITY
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.
LET’S GET SOCIAL TO KEEP UP TO DATE WITH ALL THINGS HAPPENING WITH SPECIAL NEEDS LIVING UPCOMING EVENTS/SOCIALS/GATHERINGS STORIES & HIGHLIGHTS WAYS TO BE INVOLVED
FOR ADVERTISING:
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.
HIGHLIGHTING ALL SPECIAL NEEDS BUSINESSES
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).
Follow us on Facebook@ specialneedslivingmagazine.
December 2020 • Special Needs Living
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meet the barrow family By Tiffany Barrow Photos by: Heather Gregg – 21 Vines Photography
Receiving the Diagnosis of Down Syndrome
We Love Kids!
5-Star Rated Pediatric Dentistry
WHAT IS A THERAPEUTIC DENTAL VISIT?
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To book an appointment with Dr. Edwards or Dr. Rafla please call 317-842-8453.
9885 E. 116th Street, Suite 100 | Fishers, IN 46037 317-842-8453 | babytoothcenter.com
8 Special Needs Living • December 2020
Ephesians 3:20 “Now to him who is able to do exceedingly and abundantly above all that we ask or think, according to the power that works in us.� Hi, I’m Tiffany Barrow, former resident of Fishers, IN, and this is my family. My family is originally from Baton Rouge, LA, and after receiving a promotion at work, we relocated to Indiana three months after giving birth to our twins, which included a 21-day NICU stay for Lola. We received a post-birth diagnosis of Down syndrome for our Lola who is the oldest of our set of twins. Lola was born with all of her hearing and vision intact and all of her organs completely whole. She was admitted to the NICU for failure to maintain body temperature and elevated bilirubin. Her pediatrician observed soft physical markers of Down syndrome and ordered chromosomal studies. I’m grateful for the post-birth diagnosis because I was able to avoid the stress, worry, and fear of the unknown associated with the Down syndrome diagnosis coupled with a relocation to a new state for a new role at work. Our family consists of my husband of 15 years, an 11-year-old son, Elijah, a 9-year-old daughter, Brinkley, and 2 1/2-year-old girl/boy twins, Lola and Levi. Our relocation to Indiana allowed our family to bond like never before. We became a team with the sole focus of getting settled, adjusting to our new normal, and finding our tribe within the Down syndrome community. Our first task included finding a new church home. Little did we know that our newfound church home would be a place of connection for everything else we needed and were praying for.
We joined Heartland Church. It was a church where I noticed a young, black man that appeared to have Down syndrome. Some may question why his race mattered. It mattered. Upon receiving the diagnosis of Down syndrome, I panicked out of ignorance. I knew NO ONE with Down syndrome. I knew that it existed, but I had no touchpoint to call and to ask questions. The only images I found online and ever saw on TV were of white people. Growing up in the South, racism was and still is a reality. Upon receiving Lola’s Down syndrome diagnosis, I panicked. Not because of Down syndrome, not because she was female, but because she was a black female with Down syndrome. Our society continues to struggle with the acceptance of differences of race. HOW MUCH MORE DIFFICULT would raising Lola be with her Down syndrome diagnosis?
I asked the young man if he was alone or at church with his parents. He introduced me to his mother who is still today a very close friend of mine. It was through this relationship that we met our in-house nanny for the twins six months into our relocation. The very thing that I was afraid to share publicly (Down syndrome) was the bridge connecting us to our answered prayers and the beacon of light guiding us through this journey. I also connected with the “Lucky Few-Indiana” group on social media where I found a village of women so well versed and knowledgeable within this space and navigating therapy, healthcare system, etc. ... This group helped heal my heart. I was welcomed and supported by a white woman in Indiana who didn’t care that I was black. We were and are family connected through our experiences and journeys with Down syndrome. Lola continues to THRIVE! She enjoys singing, dancing, and posing for the camera. She continues to receive physical, occupational, and speech therapy. Since relocating back to Louisiana, our family is working towards replicating many of the initiatives and support groups that we found in Indiana. We continue to share Lola and Levi with the world to show that they are more alike than they are different and that Down syndrome is nothing to fear but to embrace and to celebrate. If you would like to share your personal or family story, or to nominate someone else to be in an upcoming issue of Special Needs Living? Email us at SpecialNeedsLivingIndy@n2pub.com
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sibling’s perspective By: Zach Elliott
MEET ZACH & HIS BROTHER, SAM My name is Zach Elliott. I’m a 19-year-old from Fishers, IN. I’m a sophomore in college, and my brother, Sam, is a 14-year-old in seventh grade. Sam was diagnosed with Autism Spectrum Disorder when he was 3, and as is for the case for many families, the diagnosis changed a ton for us. It came as a shock to my parents, who had never faced a similar situation with me or my older brother, Ben. I had trouble grasping what it meant for Sam; I knew that it was a big deal, but I didn’t think it would be something that so deeply influenced his life and mine. My parents spent years trying to help Sam, be it through specialized education or different methods of treatment. I wanted to help, but I was nine when he was diagnosed and anyone who’s met a 9-year-old knows they aren’t experts in psychological development (or anything else). As I’ve gotten older, I’ve gained a greater understanding of how Sam has grown and all the effort that it took not just from my parents, but Ben and I, too. I’m embarrassed to admit that I often felt neglected growing up; I didn’t give my parents enough credit for how much time they spent putting Sam into a position to succeed. Ben understood better than I did, and did what he could to be a good brother to Sam. Now that I’m at the age he was, I can appreciate what it takes not only to raise children, but to balance their unequal needs.
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Photo credit: Liz Kaye
Cold Noses. Warm Hearts. Dogs are amazing creatures. Their gifts to humanity are loyalty, love and service. For over a decade, ICAN has been successfully placing dogs into meaningful relationships with children and adults who have physical and developmental disabilities and may need assistance with daily activities. We also place dogs into special needs facilities throughout Indiana.
To learn more about the type of service dogs we place, please visit icandog.org or call 317-250-6450
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10 Special Needs Living • December 2020
Thankfully now that I can understand the difficulties of my parents’ balancing efforts, I take solace in the times when I was able to be a part of big moments for Sam, some of my favorites being his first experiences in a big city. My dad is from Chicago and I go to school there, so he’s had the opportunity to visit and experience some things in the city that he wouldn’t otherwise. The first time, he was able to visit the Willis Tower, Shedd Aquarium, Millennium Bean, etc. and be amongst crowds of people in a way that he never had. Similarly, we’ve had the chance to go to Indianapolis Indians games with him and, while he encountered the same small annoyances that we all face at baseball games on a hot day, he enjoyed it. Now that we’re in a pandemic I’ve been involuntarily put in a situation where I see how Sam is doing. As we start to move to a different town roughly 30 minutes away, Sam has been faced with the challenge of starting at a new school. Better than I think I could have, he’s done well in trying to make new relationships and maintain old ones from his old school.
And, just like Sam, all we can do as siblings is try. It’s never easy to put up with your siblings growing up, whether you’re fighting for time on the Xbox as a kid or fighting over who gets the car Friday night as a teen. My advice is that you keep in mind what your parents are going through in trying to care for both you and your siblings. And when the 12-year-old that hears that and ignores it grows up and realizes what their parents did for them, say “thank you.” It’s been amazing to watch him grow from a kid that was almost completely non-verbal to someone who looks forward to baseball games, to trips to the city, or just to hanging out with friends. Seeing him overcome the obstacles that his condition creates helps inspire me to face the future with more confidence, and more hope. Do you have a sibling with special needs and would like to share your story & perspective in an upcoming issue of Special Needs Living? Email us at SpecialNeedsLivingIndy@n2pub.com.
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?"
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.
Elizabeth A. Homes, Esq., MBA ehomeslaw.com | 317-660-5004 elizabeth@ehomeslaw.com 10412 Allisonville Road, Suite 200A Fishers, Indiana 46038
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 December 2020 • Special Needs Living
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impact supporters
THANK YOU to the below Impact Supporters for helping to support Special Needs Living Magazine Heather Gregg – 21 Vines Photography – 317-345-7687
Portrait Photographer – I love to photograph families and children. I’m available for seniors, engagement, maternity, newborn lifestyle, cake smash, headshots, extended family sessions and more!Â
Matt Hadley – AP Engineering & Consulting, Inc.
This monthly magazine is free on behalf of the supporters. The Impact Supporters help us to get the printed copy out to more families. If you would like to help support Special Needs Living Magazine, please reach out to SpecialNeedsLivingIndy@n2pub.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
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12 Special Needs Living • December 2020
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December 2020 • Special Needs Living
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By Gordon Homes, CFP
TOP 10
MISTAKES CAREGIVERS OF DEPENDENTS WITH SPECIAL NEEDS MAY MAKE WHEN PLANNING 1. Disinherit Your Dependent with Special Needs
Many people with special needs rely on government benefits to help provide food, shelter, and medical care. If you have been advised to “disinherit” your dependent, remember that these public benefits provide no more than “bare bones” necessities. 2. Have Assets in Your Dependent’s Name
In order to qualify for government benefits, such as Medicaid or Supplemental Security Income (SSI), a person cannot have more than $2,000 in assets, in most states. If you leave funds or convertible assets directly to your dependent with special needs, they may have to be “spent down” in order to qualify for these important benefits. Assets in your dependent’s name are subject to predators (who are attracted to those with limited capacity) and creditors. In addition, they are open to lawsuits, bankruptcy, and spendthrift situations. 3. Relying on Your Other Children to Take Care of Their Sibling with Special Needs
You may be thrusting a moral obligation on one sibling to become the future caregiver of their sibling with special needs. Shouldering this type of burden can cause resentment. If the sibling without special needs gets married, would taking care of their brother or sister interfere in their lives? Will the spouse understand? 4. Leave Money to Your Other Children to Support their Sibling with Special Needs
Closely related to the above … What if the sibling without special needs dies, gets divorced, is sued, goes bankrupt, or just mismanages the funds? The funds may be lost forever. There is also no accounting here, and money can be used for other purposes by a spouse or child.
14 Special Needs Living • December 2020
5. Have a 529 College Savings Plan or UTMA Account or Savings Bond in Your dependent’s name
If these total more than $2,000, your dependent with special needs may be ineligible for government benefits. 6. Failing to Communicate Your Plan to Family Members
The best-laid plans can “blow up” because they are not communicated to immediate and extended family members. A well-meaning, but uninformed relative may leave funds directly to your dependent. This may undo all the hard work and expense you have gone through in setting up a plan. A plan is only as good as its weakest link, and communication and reviews are for many, the keys to success. 7. Failing to Fund Your Trust Properly
A special needs trust without assets is useless to your loved one with special needs. Any asset you wish to put into the trust requires a change in title or ownership. For example, if you want life insurance or retirement plans to pay into the trust when you die, you must be sure you’ve completed the proper owner and beneficiary designation forms. 8. Failing to Have the Right Kind of Trust
There is more than one type of special-needs trust. A common mistake is having a “payback” provision (where the state can recover its expenses upon the death of the dependent with special needs) when it is unnecessary. A payback trust (OBRA ’93 Trust) is used only when the trust is funded with the assets of the dependent with special needs. A third party trust is funded with assets from someone other than the dependent with special needs and does not require payback to the state. Any leftover assets can go to your named beneficiary.
9. Failing to Have the Trust Created by the Right Attorney
There are many types of attorneys, and many types of estate planning attorneys. Having a special needs trust set up properly requires specialized expertise. There are only a handful of attorneys who understand the process and ramifications. If the trust is not set up properly, your loved one with special needs may be deemed ineligible for government benefits – and you will not be here to advocate for your intentions. The state can deny coverage for essential services if the assets in the trust are considered to be “available” to the dependent with special needs. If an attorney friend offers to author your trust, ask them if they have any experience in this area.
He assists with financial and government benefit issues including access to special needs legal professionals, special needs trusts, trust funding and asset management, guardianship, social security, medicaid and waivers, as well as litigation settlements. Securities, investment advisory services and financial planning are offered through qualified registered representatives of MML Investors Services, LLC, Member SIPC www.SIPC.org, OSJ 900 East 96th Street, Suite 300, Indianapolis, IN 46240, (317) 469-9999.
Additionally, beware of trusts offered in “packages” or “online.” In these cases, you may truly get what you pay for.
The information provided is not written or intended as specific tax or legal advice. MassMutual, its employees and representatives are not authorized to give tax or legal advice. Individuals are encouraged to seek advice from their own tax or legal counsel. Individuals involved in the estate planning process should work with an estate planning team, including their own personal legal or tax counsel.
10. Die Intestate (Without a Will or Trust)
© 2020 Massachusetts Mutual Life Insurance Company (MassMutual), Springfield, MA 01111-0001.
Everyone has a will, because even if you didn’t create it, your state has one for you. A portion goes to your spouse and another portion goes to your children. Dying without a will may cause your child with special needs to receive over $2,000. This may cause them to lose government benefit eligibility. Due to the complexity of federal and state laws, you may need to seek advice from your own legal counsel who can work with your other advisors to help you plan for the future of your dependent with special needs.
All rights reserved. www.massmutual.com. SC1122 0320 CRN202203-27281
Gordon Homes, CFP is a Certified Financial Planner whose practice focuses on financial and estate planning for families who have a child or adult member with special needs. He has a unique perspective through his experience both as a financial professional and parent.
December 2020 • Special Needs Living
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THE ABC’S OF IEP’S For most of us, the journey of specially educating our child starts with a diagnosis, which usually comes from a doctor. We praise and thank the doctor for shedding some light on the mystery of why our child is the way they are. If the diagnosis is of a physical nature, medical treatments are sought to “cure” the child or at least to improve the child’s condition. By: Sheila Wolfe – IEP Services
If, however, the diagnosis is of a cognitive, emotional, or behavioral nature, the treatment is not as apparent and parents begin the quest to discover just the right therapies, medication, and educational approach and content that will give their child the best chance at living a full, independent, and productive life. This can be a Herculean task, but there are some solid steps that every parent needs to take when confronted with this reality. STEP ONE: FIRST STEPS (https://www.in.gov/fssa/firststeps/) From birth to age 3, First Steps provides family-based early intervention to children with developmental delays in Indiana. First Steps provides services such as Speech Therapy, Occupational Therapy, Physical Therapy, Special Instruction/Developmental Therapy, Audiological Services, Vision, Family Education and Training, and other services. In addition, the First Steps Coordinator will assist the family in transitioning into the public-school system on the child’s third birthday. There is typically a family co-pay for services which is determined on a sliding scale based on several factors.
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.
16 Special Needs Living • December 2020
STEP TWO: EARLY CHILDHOOD PROGRAM
Early Childhood (EC) Services are available through your public school system for children with developmental delays who have reached their third birthday. These services are similar to the services offered through First Steps although the amount of service provided through the school system is often less than what families are provided through First Steps. There is an assessment process to qualify for EC. The school will evaluate each student to determine the student’s needs. Parents need to make sure they share all available information from private sources (like doctors and therapists) with the school as well. A typical Early Childhood Program will consist of a morning or afternoon session of about three hours in a specially designed classroom. Teachers, classroom assistants, and therapists are all available to deliver the necessary services contained in the child’s IEP (Individualized Education Plan). Developing this IEP is the first hurdle most parents face when working with their school system. In my experience, schools too often have a “one-size-fits-all” mentality when it comes to providing Early Childhood Services. Parents must be diligent about understanding their child’s unique needs and advocating for a program that addresses all those needs. This is your right by law. For some children, the Early Childhood Program will not provide the intense services required to prepare them for school. Parents may want
to investigate private services including ABA (Applied Behavior Analysis) Centers for students with significant delays, especially those on the autism spectrum. STEP THREE: TRANSITION TO SCHOOL
Parents have total flexibility to try a variety of ways to meet their child’s developmental needs until the child turns 7. At 7, children are required to attend school in Indiana (or officially be enrolled in home-schooling). Deciding whether a typical Kindergarten program is appropriate for your 5-6-year-old is a difficult decision. Parents must balance the need for typical social/behavioral models with the reality that the intensity of educational services will be diluted in an environment with 25-30 kids. The option for full-time Kindergarten has helped address this in recent years. Still, many parents choose to provide other opportunities for learning until their child enters the first grade. Parents need to understand that school systems do not receive full funding for a student until first grade. This helps explain why school services are often so limited until that time. It is critical, in all circumstances, to deliver the most intense program possible as early as possible. Research has shown repeatedly that the delivery of appropriate coordinated early intervention services will lead to the best outcomes for children. First Steps, schools, private providers, appropriate therapies, and organized diligent advocacy are just some of the tools each parent will need to provide the brightest possible future for their unique and wondrous special child. Sheila A. Wolfe IEP Services, LLC sheilawolfe@sbcglobal.net
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December 2020 • Special Needs Living
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non-profit spotlight By: Katie Harris
Our purpose is to change the way the world defines and views disability by making profound, positive differences in people’s lives every day. Tell us more about your organization: Easterseals Crossroads is your community resource dedicated to helping individuals with disabilities achieve milestones in independence from birth through later life. One of over 70 Easterseals affiliates throughout the country, we are a United Way agency offering CARF accredited programs in Indiana. We have been a leading resource for people with disabilities since 1936. For young families, we are there at the beginning with early intervention therapy for babies/toddlers and therapy services for children. We grow with your family with autism services, camp and respite programs. As your family ages, we assist with transition services, employment assistance, veteran programs and community day supports. As your family changes, we provide answers for independence through assistive technology, deaf services and home modification services. How does your organization support those in the special needs community? For 85 years, Easterseals Crossroads has been actively engaged in helping individuals with disabilities achieve their greatest levels of independence. We help
18 Special Needs Living • December 2020
make positive outcomes for the many people who use our services. This past year, we served almost 9,000 individuals with disabilities or special needs. How can others get involved or support your organization? At Easterseals Crossroads, we know the importance of teamwork, especially when it comes to tough times. This past year has challenged our agency, our community and our world with the COVID pandemic. The obstacles have been immense for everyone within our community; we have felt the struggles within our own Easterseals Crossroads family. We know – now more than ever – that we are stronger together. In addition to our staff, we cannot thrive without our partners, sponsors, advocates, volunteers, supporters and donors. We cannot do what we do without support from people who know that teamwork is what enables Easterseals Crossroads to do what it does best.
Our community needs us to continue to be the resource that children and adults with disabilities depend upon. Our reach extends to 88,000 people who benefit from our services as they live, learn, work and play – people who need our services to maintain independence and thrive. Now more than ever, supporting services at Easterseals Crossroads allows us to remain the resource you may need on a future day. If you donate from now through December 31, your gift will be matched due to the generosity of our sponsor Redux. What difficulties and or challenges do you help families and or Individuals with special needs overcome? Many of the individuals whom we serve have no other means of accessing assistance; their needs would go unmet without our services. People like Jack, a 19-year-old young man who is figuring out his future. In Jack’s early school years, professionals arrived at an autism diagnosis. He has made great strides in communication and socialization since working with our behavioral therapists. Jack has recently completed high school and he is working with our employment staff to discover potential opportunities for his future. Children like Ryder, a 10-year-old boy who works with our physical, occupational and speech therapists. Ryder was diagnosed with Fraser syndrome and his everyday life has included ventilators, oxygen tanks and breathing machines. He is now experiencing the freedom of being off his vent and he is learning to use his left hand to grab things and stand independently. People like Rachel, an individual who was diagnosed with her disability as a child after recovering from meningitis. Rachel and her sister wanted to find a day program where Rachel could learn,
have fun and gain independence. They have found the perfect environment in our adult day program at Easterseals Crossroads where Rachel has gained confidence as well as independence in her daily living skills. Anything else you would like to include? Easterseals Crossroads is the community resource any one of us could need at any point in our lives. Community support is vital to our existence because we depend on philanthropy for 25 percent of our operating budget. Your donation supports individuals in our community who depend upon our services to live, learn, work and play – people who do not need our services until they do. Main Address: 4740 Kingsway Dr., Indianapolis, IN 46205 Phone: 317.466.1000 Website: eastersealscrossroads.org Facebook: facebook.com/ eastersealscrossroads Twitter: twitter.com/escrossroads Instagram: instagram.com/ eastersealscrossroads LinkedIn: linkedin.com/company/ easter-seals-crossroads Relevant Leader: David Dreith, President/CEO, 317.466.1000, ddreith@eastersealscrossroads.org Do you run a non-profit? Would you like to be a part of the non-profit spotlight or nominate someone else to be in an upcoming issue of Special Needs Living? Email us at SpecialNeedsLivingIndy@n2pub.com
December 2020 • Special Needs Living
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sponsor of the month
IEP
By: Paul Hathcoat – Special Needs Director – White River Christian Church
SERVICES
Sheila Wolfe If there is one common characteristic that parents of a child living with disabilities develop over time and through experience, it has to be FIGHT. There are obstacles to overcome and battles to be fought concerning diagnoses, medications, behaviors, skill assessments, rights, services, aides, and educational IEP plans. When something as important as a child’s education comes into play though, that fight, combined with guided and experienced professional help, turns into something like what Sheila Wolfe of IEP Services, LLC has created. IEP Services provides appropriately assertive and dynamic advocacy in the form of educational consulting services that “assist parents in obtaining an appropriate IEP for their child with special needs in the public-school system.” Sheila Wolfe herself has been the parent who was forced to develop that inner fight for her child who was “diagnosed with PDD-NOS at 3 years old.” By the time her son, Cory, was 7, Wolfe was able to secure a full time 1:1 aide in his IEP, setting herself apart from many families who
20 Special Needs Living • December 2020
are not able to maneuver as easily within the system. From there, word started to spread about her ability and effectiveness in IEP advocacy and she says, “I began getting calls from other parents who needed help” and soon after, IEP Services was born. IEP Services is built on the principle that “every individual education plan should be uniquely designed to fit each specific child’s
individual needs.” Wolfe has found success partly because this type of advocacy is what she and her organization solely focus on. There are other entities out there that “dabble in IEP advocacy, but they are typically not experts in the area.” What sets Wolfe apart is that she has years of first-hand knowledge and personal life experience, extensive specialized training, and doesn’t receive any outside funding that may dilute or avert her focused goal of “helping families navigate the world of special education.” So how does a parent IEP advocate work? Wolfe explains that “I rely on my experience and training in educational law, behavioral intervention, social skill development, sensory dysfunction and everything related to developing and implementing an educational program” to help students obtain and maintain meaningful supports that result in long-term sustained progress. That goal of progress has recently become more difficult to reach says Wolfe. “Since the revision of IDEA (Individuals with Disabilities Education Act), the power of parents has been drastically reduced. So, while 15 to 20 years ago I would have been able to give parents some really great and effective ideas, that is not so much the case today. Parents do not have to sign their child’s IEP anymore, and that change has taken away a lot of power from families. It is increasingly more difficult now to get additional supports and services.” To combat this, Wolfe helps caregivers
gather data and build files detailing their children’s needs to first make sure that they can become qualified for special education, and then partner with them to build an IEP that will intervene early and create optimal outcomes for the child. This comprehensive advocacy and support is a step-by-step process that IEP Services is prepared and delighted to offer. Above and beyond the function of Wolfe’s business, she also wants parents to know that “they are not alone.” Wolfe acknowledges, “every parent who has a child with special needs struggles with how to appropriately meet their needs. We all share that struggle. Some have greater needs than others, but regardless, we all share that struggle. Reaching out and getting connected and seeking help is very comforting and empowering. That is why I started down this path in life.” That cooperative mentality and agenda are what truly sets IEP Services apart from the crowd. If you want to know more about IEP Service or Sheila Wolfe, she can be reached by email at sheilawolfe@sbcglobal.net. December 2020 • Special Needs Living
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local events Events provided by : Brittany Lowe Event Executive
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 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 A MERRY PRAIRIE HOLIDAY Nov. 27-29, Dec. 4-6, 11-13, 18-20, 22, 23 5:30pm-9:30pm, Fri.-Sun. Conner Prairie 13400 Allisonville Rd. Fishers, IN 46038 https://www.connerprairie.org/event/merry-prairieholiday/2020-12-04/ Advanced tickets are required. No purchase at the gate. - Welcome center fully accessible to handicapped guests. - Free wheelchairs first-come, first-served basis - wheelchair assistants - interpreters for the deaf receive half-price general admission - stone paths may be difficult for wheelchair travel - buildings that are not wheelchair accessible, staff will bring experience to you - handicapped parking available close to welcome center - online quiet spot guest maps - quiet spots include weighted blankets, soft sensory toys - online sensory-friendly tip sheet
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RESOLVING DISAGREEMENTS BETWEEN PARENTS AND SCHOOLS: DISPUTE RESOLUTION IN SPECIAL EDUCATION Save the Date! Dec. 1 http://insource.org/training/webinars/save-the-date/ The presentation will review formal and informal options that may help parents and schools resolve disagreements. SANTA’S WORKSHOP Sat., Dec.5, 9:30am-10:30am, 11:30am-12:30pm Sun., Dec.6, 9:30am-10:30am, 11:30am-12:30pm Sat., Dec.12, 9:30am-10:30am, 11:30am-12:30pm Children’s Museum Indianapolis 3000 North Meridian St. Indianapolis, IN 46208 https://www.childrensmuseum.org/visit/ calendar/view/856/2020-12-05
- Provides a sensory map that identifies areas that are sensory-heavy, as well as those that may be less stimulating. - Social Narratives that show photos of some of the areas that may be appealing and areas that might be over-stimulation. - Visual checklist packet that includes instructions, picture cards, and a template to make a schedule for the day. - Barrier-free access - complimentary ticket for therapist/caregiver - emergency red phones/first aid - Deaf and hard of hearing services - mobility services - sensory map available AUTISM PARENTS’ SUPPORT GROUP OF INDIANA (Facebook) FREE Virtual Weekly Meetings (Google Meet) Saturdays 11am-12pm (last Saturday of the month – Fun & Games 11am-12pm) https://www.facebook.com/groups/autismparentssupportgroup ofindiana/ BREAKFAST WITH SANTA Dec. 5 8:30 am-11:30 am Conner Prairie 13400 Allisonville Rd. Fishers, IN 46038 https://www.connerprairie.org/event/breakfast-withsanta-2/2020-12-05/
CHRISTMAS AT THE ZOO Nov. 21-Dec. 30 5pm-9pm Open until 10pm Fri.-Sat. Closed Thanksgiving Day Indianapolis Zoo 1200 W. Washington St. Indianapolis, IN 46222 https://www.indianapoliszoo.com/ events/christmas-at-the-zoo/ - accessible parking - fully accessible ramps - low-grade slopes - entrances with ramps - box office ticket accessible window - accessible picnic tables - two rides available without leaving wheelchair (carousel and skyride) - signage with descriptions, videos with captions - service animals on leashes are permitted at the zoo
CONNER PRAIRIE Sensory Friendly Hours 10-12pm First Sunday of Every Month 13400 Allisonville Rd. Fishers, IN 46038 https://www.connerprairie.org/explore/things-to-do/ sensory-friendly-hours/ - Exhibits that make noise will be turned off. - All quiet spaces can be used and staff trained in Sensory Friendly Practices will be on hand in case anyone needs assistance. - Price: $4 (members are free). Tickets available at the box office. - All ages THE POWER OF CONCISE, CONSISTENT LANGUAGE FREE WEBINAR Dec. 14 at 6:30pm Indiana Resource Center for Autism https://www.iidc.indiana.edu/irca/what-we-do/online/ family-support-webinars.html A specialist that will define the strategy, provide examples, and discuss challenges caregiver may face when implementing concise and consistent language in their home.
VIRTUAL WORKSHOP SPECIAL NEEDS PLANNING: LEGAL AND FINANCIAL ISSUES, GOVERNMENT BENEFITS AND EMPLOYMENT January 25 6:30 p.m. Presented by: Gordon Homes, CFP, CLU, ChFC, CASL, Special Care Planner and Parent and Elizabeth Homes, MBA, J.D. Special Needs Attorney and Sibling This workshop will cover Guardianship and Supported Decision Making, Special Needs Trusts vs ABLE Accounts, Trust Funding, SSI, SSDI and Adult Child Benefits, Disability Medicaid, Waivers and Medicare, and the impact of Employment. Q & A to follow the presentation. Hosted by: Dr. Cathy Pratt – Indiana Resource Center for Autism – Indiana School Mental Health Initiative – Indiana Institute on Disability and Community 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.
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the lucky mama project Written by: Rae Swift
SUPPORTING THE
Down Syndrome
COMMUNITY
24 Special Needs Living • December 2020
The Lucky Mama Project was founded in partnership with Down syndrome Indiana in 2018 by Heather Gregg. She was inspired by her daughter, Ivy, who has Down syndrome and her own personal experiences with receiving a prenatal diagnosis when she was 14 weeks pregnant. Her website comments that when these moms should be receiving congratulations, instead they are hearing “I’m sorry.” The Lucky Mama Project works to connect and offer support to new moms who receive a pre- or post-natal diagnosis of Down syndrome. The Lucky Mama Project does this by providing information at the time of diagnosis to local OB/GYN offices as well as care packages to maternal-fetal medicine offices for moms who are a little farther along in their pregnancies. After their baby is born, the Lucky Mama Project delivers or ships a swag bag with presents inside for both new mom and baby. Among these gifts, there is always a handmade blanket and a letter from a local girl with a diagnosis of Down syndrome to the new parents. The Lucky Mama Project’s goal is to provide support and make sure the family knows they are not alone in their journey.
If you know someone who might benefit from a care package or are a medical provider, you can visit their website at dsindiana. org/lucky-mama-project in order to request a care package and information packets. If you would like to get involved with the Lucky Mama Project, you can reach out to Heather Gregg at hgregg2017@gmail.com. They are also accepting monetary donations and handmade baby blankets as well as Amazon wish list purchases. All donations can be sent to Down syndrome Indiana, 708 E. Michigan St., Indianapolis, IN 46202. Note: The Lucky Mama Project’s 2021 calendar is on sale now. It features 40-plus kids in Indiana that have Down syndrome. Proceeds go toward creating care packages for new moms. Purchase yours here: https://www.createphotocalendars.com/Store/ The+Lucky+Mama+Project+Calendar+2021-5287689519. If you would like to share your personal or family story, or to nominate someone else to be in an upcoming issue of Special Needs Living, email us at SpecialNeedsLivingIndy@n2pub.com.
December 2020 • Special Needs Living
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By Lisa M. Monge, MSN, RN
MEET THE MONGE FAMILY
Lisa, Livvy, Quincy, Brock & Brody Not Every Fence is White and Made of Pickets I am a single mother to four children, two with Autism Spectrum Disorder. Four years ago, my then-husband and I chose Indiana to be our retirement state after he completed 20 years of active duty in the military. While moving around with his military career, delivering three children through deployments, I also managed to obtain a Master of Science in Nursing and an undergraduate certificate in Nursing Care of Children with Autism Spectrum Disorder. In the fall of 2016, while I was on shift at a local pediatric emergency department, our 4-year-old had to be rescued from our community retention pond. Aside from being a nurse, graduate student, wife, and mother of four, the day my autistic child jumped into our retention pond, I became an autism momma bear on a mission to find a way to prevent another child in Indiana from drowning in a retention pond. I learned the state of Indiana does not have any regulations on retention ponds. Since this horrific experience, we enrolled in the special needs swimming lessons at a local pool near me, but they were not effective for the specialized needs our children required. The Applied Behavior Center for Autism granted us a scholarship for Brock and Brody and they had four swim lessons by a specialist dually trained in autism and swimming. Their progress was amazing! Like a majority of families with disabled children, the cost of appointments, multiple therapies, special diets, medical equipment, etc., are already financially draining, so the added cost of appropriate swim lessons (although priceless) is not feasible for the typical, working-class family. Unable to afford the costs, I began to seek opportunities not only for my children, but other children like Brock
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and Brody and other families like mine. I learned to write grants. Grants have made it possible to provide 65 children per year vital special-needs swimming lessons they otherwise would not be able to obtain. Advocacy for me has become a way of life. Networking through the special needs community allowed me the great honor of being selected to complete the Indiana Governor’s Council for People with Disabilities Partner in Policy Making (class of 2019). The council focused on leadership training and skills to create positive partnerships with elected officials to influence policy decisions and services supporting those with disabilities. I learned of so many resources at local, state, and federal levels during this program and feel compelled to keep advocating. Being a single mom, emergency room nurse, clinical nurse instructor, grant writer, and advocate … does NOT come easy with two young children at home that have disabilities. I feel frustrated at the system and the roadblocks. I am exhausted mentally and physically. I worry all the time about the future of my little boys and often feel like I am not available enough for my teenagers. Brock and Brody are not aware of their surroundings and both are an elopement risk. We have an alarm system, special locks on every single door, including the bedroom. They sleep in my room so I
Always their keeper Quincy ... Knuckles before the game The Autism Society of Indiana workers at their birthday party September 2020. Brock is 7, Sept. 30; Brody 8, Oct. 20 Left: Sami, Allie, middle, Logan, right, Brody, left, Brock, right
Lisa M. Monge, MSN, RN
can make sure they do not get out in the middle of the night. Working in the emergency room, my hours are not typical 9-5, so, of course, I need early childcare and late childcare. How am I able to manage this lifestyle? By no means do I live in a home with a white picket fence. I do, however, have an amazing support system: my care providers, my ex-husband, my teenagers, and my current employer.
The Autism Society of Indiana provides access to Respite Care and Participant Assistance & Care (PAC) services throughout all 92 counties in Indiana to support families and ER nurses – Lisa Monge and Cindy individuals affected by autism. This care is delivered by our Direct Care Providers (DCPs). To meet the demanding needs of my family, I have three DCPs, all of whom are college students rotating their school schedule to meet my needs. Sami Jo Hart has been with the boys for over four years and is getting ready to move to Colorado. Allie Watson is our newest DCP but has known the boys since we moved to Indiana in 2016. Though all these ladies are extraordinary, Logan Moss spends the most time with the boys and loves them like her own. Logan has become a second mother to Brock and Brody. She knows their doctors, medications, likes and dislikes, has cared for them through illness, bought them clothes on her day off and even welcomed them to her own home on many, many occasions! Logan has also been a comforting shoulder when this overworked, stressed, and overly emotional momma needed a shoulder to cry on! As mentioned, I am a single parent through all this. I have full custody, and three of my four children are still at home. My oldest and only daughter, Livvy, is a junior at IUPUI and studying elementary education with an emphasis in special education. She has chosen this plan of study because of Brock and Brody. Livvy believes they need teachers like her to help them grow and learn at their own pace. Livvy has a special bond with Brody. Brody’s behaviors can be difficult to work with sometimes but he relates to his sister in an incredibly special way.
Brock and Brody have an amazing big brother, Quincy at home. Although he is still a senior in high school, plays football, and works a part-time job, he always has time to play with his brothers. Quincy makes sure they are tucked in at night and has not missed a single Christmas play at their autism school! The most difficult task was learning to co-parent. The boys visit their dad When Brody fell 20 feet out of the every other weekend and we did not window … This kid never left his side get along for a long time. We have in the emergency room. vastly different lifestyles and had dif- Quincy will FOREVER look out ... an angel for these kids ferent views on everything you could imagine. Then very recently a life-threatening accident occurred, and it all changed! Brody managed to push out the screen on a second-story window and fell nearly 20 feet to the ground, landing on grass and concrete. Everything changed. Our differences no longer mattered. Our focus and priorities completely changed. Brody managed to escape the fall completely unscathed. I can only believe it was divine intervention. From that day on, the health and wellbeing of our children became our priority at all costs. My children’s father and I put their needs and health above our motives, feelings, and agendas. We CHOOSE to communicate, collaborate and co-parent to give our children what every parent wants! Our children have enough barriers already. We, as co-parents, will work to maximize their future and potential by any means possible! Having this amazing village in my corner is the only way I can live. For a long time, I felt like I was in a mode of survival and barely able to keep moving forward. Although I am extremely grateful to have a supportive management team at my place of employment (I’m a full-time ER nurse), I would not “live” without the whole village behind me. Having the ability to live and truly enjoy life, means I have the opportunity to take my children and enjoy the lake, go to a swimming pool or even have a fun evening at Chuck E. Cheese. I also have the opportunity to have respite, which is so important in my situation. Self-care is even more vital to the parent or guardian of a person with special needs. Caregiver burnout affects the individual and the whole family. With that said, I would like to send my gratitude to the Hoosiers Do you have a caregiver that in my village: Sami Jo, you would like to nominate Allie, Logan, Quincy, to be in an upcoming issue of Livvy, Juan, Deb, Cindy Special Needs Living? Email us at and Michelle. SpecialNeedsLivingIndy@n2pub.com. December 2020 • Special Needs Living
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NAVIGATING
special needs
By Amanda Fineberg
Agape’ Therapeutic Riding Resources, Inc.
Briezy’s Bunch
24970 E. 95th, Cicero, IN 46034 (317) 773-7433 Email: dlaird@agaperiding.org Website: www.agaperiding.org/
11715 Fox Rd., Ste. 400, #145 Indianapolis, IN 46236 (317) 597-0111 Email: assistance@briezysbunch.com Web: www.briezysbunch.com/
Agape serves all kinds of individuals and groups including families with special needs, at-risk children and youth, and seniors. We have programs specifically designed for schools, churches, senior communities, veterans, and community centers.
Briezy’s Bunch is a 501(c)(3) not-for-profit organization that aims to make an impact in the lives of those affected by epilepsy by providing financial assistance, emotional support, and educational resources. Family and Social Services Administration
Best Buddies
8604 Allisonville Rd., Suite 165 Indianapolis, IN 46250: (317) 436-8440 Email: marciaclutter@bestbuddies.org Website: www.bestbuddies.org/indiana Best Buddies is the world’s largest organization dedicated to ending the social, physical, and economic isolation of people with intellectual and developmental disabilities (IDD). Our programs help people with IDD form meaningful friendships with their peers, secure successful jobs, live independently, improve public speaking, self-advocacy, and communication skills, and feel valued by society.
28 Special Needs Living • December 2020
2620 Kessler Blvd. E. Dr. #105, Indianapolis, IN 46220 (317) 205-0101 Website: https://www.in.gov/fssa/ Your go-to site for disability services, early learning and childcare, family resources, Medicare, and family services waivers. Children’sTheraplay
9919 Towne Rd., Carmel, IN 46032 (317) 872-4166 Website: https://www.childrenstheraplay.org/ This is one of the few clinics in the country dedicated to providing physical and occupational therapies on horseback, through an innovative treatment strategy called hippotherapy. And
it is life-changing for both the children we serve and for their families. Down Syndrome Indiana
708 E. Michigan St. (317) 925-7617 Website: https://dsindiana.org/ Down Syndrome Indiana is a one-stopshop for information and resources on Down syndrome. The programs it offers are intended to promote the inclusion of individuals with Down syndrome in their greater community, as well as to offer support and information to families, caregivers, educators, employers and the professionals who serve individuals with Down syndrome. Easterseals Crossroads
4740 Kingsway Dr. Indianapolis, IN 46205 317-466-1000 Website: http://eastersealscrossroads.org/ Easterseals Crossroads is the leading local resource dedicated to serving individuals and families living with disability. · Resources and training that help people learn in order to grow, develop and thrive
GiGi’s Playhouse Indianapolis
5909 E. 86th St., Indianapolis, IN 46250 (317) 288-8235 Website: https://gigisplayhouse.org/indianapolis/ GiGi’s Playhouse Indianapolis, Down Syndrome Achievement Center, is a place to meet new friends in a safe environment, as well as to provide the opportunity for individuals with Down syndrome and their families to grow, develop and network. Here at GiGi’s Playhouse, we desire to become a place of sanctuary, belonging, and love. GiGi’s is a place where new parents can see the potential that their child can achieve, and all individuals with Down syndrome can reach new heights. Indiana School for the Blind and Visually Impaired – statewide
· Employment options to prepare people to work to improve quality of life Down Syndrome Indiana · Activities that help families and children was my lifeline when I found relax and enjoy play out my unborn daughter · Vital programs that help people would have Down syndrome. live independent lives
They have been there every step of the way to guide my family and support us through this beautiful journey.
7725 N. College Ave. | Indianapolis, IN 46240 317-253-1481 Website: isbvik12.org The Indiana School for the Blind and Visually Impaired is nationally and internationally recognized for its excellence and best practices. Mini Minds
Edutherapy
1033 3rd Ave. SW, Ste. 107 Carmel, IN 46032 630-234-9427 Website: https://www.edutherapyllc.com/contact
I specialize in using Solution Focused Brief Therapy (SFBT) to work with grief and loss, which are often accompanied by anxiety and depression. I have experience helping people with these issues, and I can help you envision and build your preferred future. Gail M. Castle, LMHC / LCPC Family Voices Indiana
12175 Visionary Way, #1360 Fishers, IN 46038 (844) 323-4636 Website: http://www.fvindiana.org/ Family Voices Indiana provides information, training, and one-on-one support to families of children and youth with special healthcare needs, and the professionals who serve them. We aim to provide families with tools to make informed decisions, advocate for improved systems and policies, and build partnerships between professionals and families. First Steps Indiana
https://www.in.gov/fssa/4655.htm Families with children ages birth to third birthday who are experiencing developmental delays and/or have a diagnosed condition that has a high probability of resulting in developmental delay may be eligible for First Steps services.
580 E. Carmel Dr., Ste. 320 Carmel, IN 46032 (317) 564-8332 miniminds.org Let’s create a culture in your family in which both children and parents actively recognize challenges, seek solutions, welcome change and grow closer. To achieve this vision, we are offering highly personalized service plans to meet the needs of each unique child and family using a “whole brain, whole child, whole family” approach. We pride ourselves on taking the world’s latest brain research to develop skills and create strategies that work for our local families. St. Joseph Institute for the Deaf
9192 Waldemar Rd. Indianapolis, IN 46268 (317) 471-8560 https://sjid.org/ Mainstream support specialists will work directly with students and the professionals in local classrooms in support of auditory skills, social and self-advocacy skills, and academic performance. Share the cool things you enjoy doing or places you enjoy going that others in the special needs community may like to know about. Email us at SpecialNeedsLivingIndy@n2pub.com.
December 2020 • Special Needs Living
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30 Special Needs Living • December 2020
Pastor’s
By Paul Hathcoat
CORNER
Pastor’s Corner
If you are or know a family or individual living with disabilities, you may have seen and felt the vacuum of community that often accompanies that life experience. In terms of connectedness, social opportunities and premium things – like date nights and birthday party invitations – those privileges are often few and far between. So, the question that I, as a pastor ask is this, is your access to the church and its community inadequate as well? I would guess that many of you readers would say yes. In my years in disability ministry, I have met many families who report that they don’t have access to a quality church environment that not only accepts them or their child with a disability, but that has intentionally sought them out and embraced them all as an integral part of the body. This all too common report is unacceptable in today’s day and age. In response to this condition of the church and that experience, let me say first, I apologize. I apologize for the church and apologize for us pastors around the country who have not yet seen clearly the people living in our communities that walk through life with a disability. I apologize that there are sons and daughters out there that have been asked to leave or who have been urged to be left at home because they make a bit too much noise or are unpredictable and need space to move around and be themselves. I apologize that some of us in the religious world have forgotten that all parts of the body are equally important and that those that seem weakened are actually the ones we cannot do without. And lastly, I apologize that you, those readers out there that are identifying with this letter, have missed opportunities to connect with the church, the church community, and maybe even your creator. But there is hope and progress! As a Special Needs Pastor at White River Christian Church in Noblesville, IN, I get to not only see a church embracing people of all abilities, but I also get to be a daily part
of connecting EVERY life to Christ. The important word there is “every.” There is a network of dynamic and quality congregations in and around Central Indiana that understand the necessity to welcome and accommodate people living with disabilities into their church. There are communities where self-appointed advocates walk the halls of the church on Sunday, the aisles of the grocery store on Monday, and the halls of the schools on Tuesdays intentionally looking for people or families that need to know that God loves them and their local church sees them.
As we approach a new year, that everyone like me is surely optimistically thankful for, we also continue to approach a new age in which the Sunday school classes and youth groups around us are actively seeking out kids with disabilities to join them. A new age where church staffs and church boards are prioritizing resources to serve the disability communities around them. A new age where supports and social assistance are recognized and then made available to families through the local churches in their areas. And even a new age where ex-bounty hunters turned special needs pastors, like me, can support their families and serve their God by welcoming people of all abilities into church life and faith life, vocationally. This is what the Pastor’s Corner will be bringing to you each month. There is Hope and there is Progress! Author’s Notes – If you want to read more about the sources used in this letter each month, or hear about the disability ministries around you, feel free to contact Paul Hathcoat at the information below. Scriptures referenced – 1 Corinthians 12:12-27 Paul Hathcoat Email: phathcoat@wrcc.org Ph #: 317-840-5558 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.
December 2020 • Special Needs Living
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15
WAYS MY DAUGHTER
lives in color a moment of inspiration By: Laura Spiegel – Paint Her in Color
My 7-year-old, who lives with cystic fibrosis, surprises me every day with her unabashed zest for life. From the moment she opens her eyes, to the moment she bids adieu to Venus, she doesn’t just march to her own beat. She soars. Here are 15 of the ways my daughter lives in color every day. 1. She wants to be a worm doctor when she grows up. You know, the people who rescue crusty worms from the sidewalk after the rain? It’s apparently a thing. 2. She has named both her feet. Winston and Abby carry her everywhere, and they are feisty when their names are mixed up. 3. She talks to the flowers and dresses like a witch. A witch in a swimsuit who jumps through the sprinkler with her hat perched atop her head, to be more specific. 4. She invites the neighborhood pests to “ant parties” on our front sidewalk. The invitations are simple. Hamburger buns soaked in water and smashed onto the pavement. Never tried it? Give it ten minutes, and the critters will come. 5. “Close the door! You’re letting in flies!” I complain. “I like flies,” she deadpans as she marches down the sidewalk, gray wig in hand. 6. “This is my favorite book,” she declares. “I’ve never read it, but I like how [the author] decorates the cover and uses proper words and puts page numbers everywhere.”
32 Special Needs Living • December 2020
7. When she grows up, she wants to “change the world, like Martha King, Jr.” She will start by “making it illegal to be mean.” 8. Each holiday, she packs a bag of stuffed animals and treasures from her room and gifts it to her mom, her dad, or her big brother. Not just the ratty old stuff. The good stuff, too. 9. She makes homemade books with stories, discussion questions, and a concluding word search. Her favorite involves the sun and the moon battling over who gets to be in the sky. Spoiler alert: they learn to share. 10. She is slowly completing her mastery of bad words, courtesy of her obsession with The Sandlot. She just learned what’s funny about the planet Uranus. I’m sure it will make its way into a story soon. 11. She is the only person I know who follows up “I want to make God’s heart full today” with “By the way, Jesus hit me last Tuesday.” 12. Some days, it takes an act of God to get her to do her respiratory therapy for her cystic fibrosis. Other days, she’s done her therapy and run five laps around the yard for good measure – all before I wake up. 13. She likes to listen in on my board meetings with the Cystic Fibrosis Lifestyle Foundation. She quietly asks whether the other members do mask and vest like she does. The more people who do it, the better. 14. She names her medicines by taste. This makes medication reconciliation with the pharmacist a real treat. 15. She pumps herself up before taking the “yucky, disgusting one” or taking on the monkey bars. “You can do this,” she’ll whisper. “You can do hard things.” My daughter’s cystic fibrosis is an important part of her, but it doesn’t define her any more than her witch hat or her left foot, Abby. To define her by her health alone would be to paint her life – her world – in black and white. My daughter is a warrior, a dreamer, and a lover and protector of all things big and small. She also lives with cystic fibrosis. And me? Like so many other parents of children with special medical, developmental, or behavioral health care needs, I’m going to paint my daughter in color. Calling all individuals with special needs, parents, grandparents – If you would like to share some inspiration with the community or nominate someone else to be in an upcoming issue of Special Needs Living, email us at SpecialNeedsLivingIndy@n2pub.com.
December 2020 • Special Needs Living
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pioneer parents in indiana By Angela Arlington
About
Tom
O’Neill
34 Special Needs Living • December 2020
On August 31, 1978, Tom O’Neill’s son, Joshua, was born. He was born three weeks late and in critical condition. Because of a number of medical complications, the decision was made to immediately move Joshua from Lake Forest Hospital in Lake Forest, IL, to the neonatology unit at Evanston Hospital. During his 37-day stay in the neonate unit, Joshua experienced surgical procedures twice; one of them being major surgery. Besides the other medical complications, on the day of his birth, there was also a tentative diagnosis of Down syndrome; that was confirmed a few days later. Joshua was also born with Hirschprung’s Disease, a disease of the lower intestine. It required immediate surgery following his birth and another surgery 10 months later. Prior to their experiences with the neonatology unit at Evanston, Tom indicated that he had never heard the words neonatology or neonatologist. It was the neonatologist at Evanston Hospital, Dr. Tom Gardner, who gave Tom and his wife, Rita, the Down syndrome diagnosis. Dr. Gardner gave this information, as well as the other medical information, in an affirming and supportive manner. He was also the person who, according to Tom, “held their hands” and provided the supports that were so important and so helpful for them during Joshua’s first days of life. A year after Joshua was born, the O’Neills moved to Fort Wayne, IN. After one year of involvement and their growing dissatisfaction with the local pre-school that Joshua was attending, Tom and Rita, along with two other families, banded together and started a pre-school that they felt would better address the physical and cognitive needs of their children; needs that were not being met by the current program. They applied to the IRS and were granted 501(C)3 status. With that in hand, the three families went to the Fort Wayne community to raise funds. The funds raised, along with the tuition paid by the three families, kept the program financially afloat. They did not apply for and did not receive any government or United Way funds. While that made for some financial challenges, it also gave them the freedom to operate the program without unnecessary regulations. Tom said that he and Rita, as well as the other families, all felt that if they did not ensure the service their kids needed, “who was going
to?” After the first year, an infant stimulation program was added with three newborns. As unorthodox as it was, the three families came to serve as both the administrators of the program, as well as the Board of Directors. The program they started began in rent-free space provided by the University of St. Francis. They hired Sarah Litch, a highly-respected and gifted early childhood educator as the lead teacher, and contracted for services with a speech therapist. The program was known as the Learning and Development Center, the LDC. When Joshua left the program in 1986, there were 37 children with various special needs enrolled. In transitioning from LDC, Joshua moved to the Southwest Allen County School Corporation and was placed in his local neighborhood public school. In 1998 Joshua graduated from Homestead High School with a regular high school diploma. Joshua was the first youngster with Down syndrome to go through all 12 grades and graduate with his class. During the 12 years that Joshua attended Southwest Allen County Schools, Tom served on the Superintendents’ Advisory Council. Upon graduating from Homestead High School, Joshua went to New Haven, Connecticut to attend Chapel Haven, a post-secondary program for individuals with various learning challenges and cognitive disabilities. Joshua graduated from the residential program in 2001 and wanted to remain in the New Haven community as he had established relationships. He has lived in his condo for 20 years, with a roommate and supports. Over the years, the LDC was logistically integrated into local infant and pre-school programs operated by the Methodist and Catholic Churches. The philosophy was to provide the specialized services needed, while at the same time mainstreaming the children into regular early childhood and preschool programs. This provided a normalizing experience for all of the children; both those with and without special needs. LDC continued to provide services for 25 years, until 2005. Tom and his wife, Rita, found their involvement with the LDC to be both challenging and at the same time rewarding. Tom used the word “empowering” to describe the benefit for them because of their involvement with the LDC.
By 1981 Tom was active with the Down syndrome community at the local, state, and national levels. That involvement continued for the next 28 years, until 2009. Besides his involvement with various local and statewide initiatives, Tom served on the Boards of Directors of both the National Down Syndrome Congress, based in Atlanta, and the National Down Syndrome Society, based in New York City. Other efforts with which Tom was involved included bringing Down syndrome conferences to Indiana; two of these conferences were held in Indianapolis and one in Fort Wayne. Tom was part of the planning group that established the Down Syndrome Association of Northeast Indiana. While at both the local and national levels, Tom was always involved with fundraising. He enjoyed the different challenges that each required in order to educate the public while successfully raising money. Tom was involved over the years in advocacy, both in Indianapolis and Washington, D.C. The international Down syndrome movement started in the early 1980s. Tom was involved with that and participated in the structuring and programming that brought Down syndrome to first and third world countries. Time with his family was always critically important to Tom. Tom’s and Rita’s son, Noah, was born in 1981. Tom especially appreciated the one-on-one time he had with each son. He focused on making time with his sons as they grew up. Each year he would take one of his sons on a few days of vacation to do what they wanted. Those trips were usually sports-related. Both Josh and Noah got his individual attention and time to do what they wanted. Tom says that while that special time was important to both Joshua and Noah, he said that it was probably equally if not more important to him. He especially treasures the memories of those trips now as his sons are adults, “You only get to go around once in life.” Realizing the importance of education and post-secondary experiences for every child, Tom and his family established the O’Neill Tabani Enrichment Fund in 2004. It is administered through the office of the National Down Syndrome Society in New York City. Any young adult with Down syndrome, 18 and over, is eligible to apply for support. To date, 94 young people have received funding. Tom and Rita remain involved with the Fund, while the leadership of it has moved from them to their son, Noah, his wife, Ashley, and Joshua. Today as Tom reflects back on over 40 years of involvement with Down syndrome and the world of disability services and rights, he recognizes that there is much work that remains to be done. Tom also recognizes that it is evolving and continues to move in a positive direction. Tom is especially pleased to see the level of involvement and leadership from the self-advocates, as well as the ever-growing involvement of dads. Today the DADS movement, Dads Appreciating Down Syndrome, is strong and as Tom stated, “The involvement of dads in the lives of their children, both those with Down syndrome and those without, makes for stronger and healthier individuals, healthier couple relationIf you would like to be a part of this ships, healthier famiPioneer Parent section or to nominate lies, and a stronger and someone else to be in an upcoming issue of Special Needs Living, Email us at healthier society.” SpecialNeedsLivingIndy@n2pub.com
December 2020 • Special Needs Living
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36 Special Needs Living • December 2020
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December 2020 • Special Needs Living
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