Webinars & Facebook Live P.8
What's going on?
May 2018
TIMES
Exceptional
EXCLUSIVE
MAGAZINE
How Adaptive Clothing Empowers People with Disabilities P.10
From the Executive Director, Mary Jacob P.4
MISSION The Mission of Families Helping Families of Greater New Orleans is to educate and connect children and adults with disabilities, and their families to resources, services, and supports to attend school, work, and thrive in their communities.
BOARD OF DIRECTORS Gregory Brenan, CPA, CCIFP, CGMA Jo Ann LoRusso, Ph.D. Denise Barrera, MPH, MSW Kevin Walker, MBA Judith Otto, LOTR, CDRS Lisa Gennusa Ledet Debra Dixon M.Ed.+30 Jedidiah Jackson Ashley Bourg
OUR TEAM Mary Jacob, Executive Director mjacob@fhfofgno.org Ext. 207 Bebe Bode, Executive Assistant bbode@fhfofgno.org Ext. 226 Raquel Castaneda, Youth Information & Training Specialist rcastaneda@fhfofgno.org Ext. 217 Nicole Desroche, Information & Training Specialist ndesroche@fhfofgno.org Ext.218 Liz Dumas, Administrative Assistant ldumas@fhfofgno.org Ext. 202 Laura S. Nata, Programs Supervisor lsnata@fhfofgno.org Ext. 209 Thuy Nguyen, CSHS Parent Liaison tnguyen@fhfofgno.org 504.896.1340 phone | 504.896.1360 fax Steven Nguyen, CSHS Youth Liaison snguyen@fhfofgno.org 504.896.1340 phone | 504.896.1360 fax Denise Sweatman, Finance Manager dsweatman@fhfofgno.org Ext. 203 Sharon Blackmon, Community Outreach Consultant sblackmon@fhfofgno.org Jessica Rodrigue, Lead Training Specialist jrodrigue@fhfofgno.org
700 Hickory Avenue Harahan, LA 70123 504.888.9111 800.766.7736 504.353.2350 fax info@fhfofgno.org fhfofgno.org
MAY 2018
Contents
04 From the Director 05 Disability and #METOO: Part 1 06 Tips on How to Better Communicate with your Doctor: Making the Most Out of Your Visit 07 We want to make you a Star! 08 What's Going On? April 2018 Webinars 10 How adaptive clothing empowers people with disabilities | Mindy Scheier 11 SSI: Protect Yourself Before you Wreck Yourself 13 E-learning Mini-Modules | 2018 Guide to Summer Fun 14 Childcare Assistance New Application Submission Process
From the
Mary Jacob
Executive Director
{{page}}
continued on p.7
For almost 26 years, Families Helping Families of Greater New Orleans has inspired hope and changed lives, every day. On Tuesday, May 1st we need YOU to help us continue this work for many more years to come. YOU can help us change lives by participating in GiveNOLA Day 2018 on Tuesday, May 1st. GiveNOLA Day is one day – to give as one, and YOU can make Families Helping Families of GNO YOUR charity for the day. We need YOUR financial help so we can continue making positive outcomes in the lives of individuals with disabilities. YOU have the power to make the difference. No donation is too small, and all donations are tax deductible. Every year we support over 6,000 requests for help. These requests come from people all over Louisiana, all socio-economic backgrounds, and all ethnicities. Disabilities do not discriminate – it affects us all. Samples of our success include: Dr. Donald, who was "Grateful for having his feelings validated when he didn't agree with the school and used the information we provided to advocate for his child." Tammy, who was "Very thankful for the outcomes her daughter Samantha had after getting support from our staff. Tammy learned about community supports and services that would help her daughter have a successful transition from high school to the adult world." Robyn, "Was able to participate in her son’s IEP meeting as an equal member once she learned how to advocate effectively. Now her son has good grades and an IEP that meets his educational needs." Brian, is now "Going to college once he got assistance from FHF of GNO during transition." Chris wrote, "We provide comforting hands and a wealth of knowledge that gives his family the security to know their children have a brighter path to achieving their full potential." Iesha, is "More knowledgeable about her daughter’s diagnosis and now knows the different supports and services available." Jana writes, "As a professional with a disability; it gives her great joy to have an agency that respects, understands and acknowledges those with disabilities." We need YOU to help us reach our goal of $20,000. This funding will be used to help us continue providing much-needed support to the families we serve – families that depend on us. YOU can donate now by going to Families Helping Families of Greater New Orleans GiveNOLA page at https://www.givenola.org/families-helping-families-of-GNO. Want to help celebrate with us? Join us for our GiveNOLA day Luau on Tuesday, May 1, 2018, from 11 am to 2 pm. We have a fabulous array of food that has been generously donated by many restaurants and food establishments. For a minimum donation of $10, you can come out and enjoy some fabulous food, leis, networking and more. THANK YOU for supporting Families Helping Families of Greater New Orleans. YOUR donation does make a difference!
Disability & #MeToo: Part 1
continued on p.12
raisecenter https://raisecenter.wordpress.com/2018/04/13/disability-and-metoo-part-1/ Over the past year, a revolution has been taking place. Due to the voices of some strong, brave women sharing their long-held secrets about sexual harassment and abuse, thousands of Americans are coming forward about their own stories that they have held in secret for decades. Despite the truth that is being revealed about these heinous acts, many individuals continue to hide their stories out of fear of not being believed, not having an outlet to share, and fear of retaliation. Many of these people who continue to protect their stories are individuals with disabilities. For people with disabilities who have been subjected to sexual harassment—or worse—there may be difficulty communicating their experiences, being believed, or fear of the loss of care. In a majority of abuse cases for people with disabilities, the care provider (such as a family member or personal care attendant) is the perpetrator; this is often the last individual that the public would consider to be the abuser. Unfortunately, there are limited options for people with disabilities to report this abuse or get support after it has occurred. People who have survived abuse from a care provider recognize that they often must decide between enduring abuse or receiving the care necessary to be able to get out of bed the next morning. The #MeToo revolution has created an unprecedented movement of individuals coming forward to reveal their experiences with sexual assault and abuse. At this point, most of the individuals are already in the public eye, including actors and politicians, but a majority of the abuse survivors are the largely unseen members of the disability community. It is estimated that up to 85% of women with intellectual and developmental disabilities experience sexual abuse in their lifetime, yet a majority of their stories will never be heard. Thank you to the individuals who were willing to share the following stories for this blog. Putting together this series was both humbling and terrifying because I know that these stories were life-changing events, and I have no way to do them justice. It is not easy to share life altering, private experiences with others, and I am grateful for all of those who shared their stories with me, allowing me a glimpse into the private, often secret dimension of individuals’ lives. For all of the people whom I interviewed, their experiences with sexual abuse changed their self-perception, how they viewed the world, and undoubtedly their trust in humanity. This blog series is separated into four pieces from each of our contributors. At the bottom of each piece you will find resources for assault survivors. In the interest of protecting individuals’ privacy, if you would like to contact any of the contributors, please feel free to use my e-mail address (jbadger@raisecenter.org), and I will relay questions and messages on to the writers. Part 1: Ms. R As a single mom with a young son on the autism spectrum, Ms. R was dedicated to providing for her family. She took every job that she could find just to make ends meet but, like many other single moms (especially for those with children who have disabilities), it was difficult to find affordable and appropriate childcare. However, she knew that she could rely on her father, who was a constant support for her and her son. For many years, Ms. R’s father had watched her son while she was at work. He was a good father and so she did not question his motivation or intentions. However, she vividly remembered a phone call from her brother that changed her understanding of the very nature of humanity, including that of her own father. On the other end of the line her brother described walking in on situation that could have never been predicted, her son being sexually assaulted by her father. A million questions ran through her mind as she went to pick her son up: “How could this happen?”, “How did I miss this?”, “Why didn’t my son tell me?” Her son, like countless other childhood survivors, wanted to be liked and potentially felt like it was his fault. Further compounding the issue was her son’s limited communication ability, preventing him from being able to thoroughly describe what was happening. As Ms. R’s son’s therapy began so did the criminal trial against her father. Because of Ms. R’s son’s diagnosis and limited communication, the judge felt that he was not a reliable witness, which forced them to accept a plea bargain with her father, resulting in his receiving a lesser sentence. Now at the age of 22, Ms. R’s son lives with multiple mental health disabilities that have been exacerbated by his trauma. He has extreme anger and continues to question why he was the target. Surviving this trauma continues to influence his actions, even fifteen years later. Survivor Resources RAINN General info on abuse with resources https://www.rainn.org/articles/sexual-abuse-people-disabilities NPR Series on Disability and Abuse: Abused and Betrayed Podcasts https://www.npr.org/series/575502633/abused-and-betrayed National Domestic Violence Hotline Information and resources http://www.thehotline.org/is-this-abuse/domestic-violence-disabilities/ The End Abuse of People with Disabilities Webinar Series Webinars and resources https://www.endabusepwd.org/publications/end-abuse-pwd-webinar-series/
Tips on How to Better Communicate with your Doctor: Making the Most Out of Your Visit
As you get older, it’s important to understand the need to take charge of the different aspects of your life, as you’re pushing towards becoming as independent as possible. Sometimes we’re forced to do things that we may not feel comfortable with, at first, but with enough experience; your confidence begins to build. One of those things is speaking with your health care provider. This may include, but isn’t limited to; doctors, nurses and office staff. Here are a few tips that I use/ have used to make the most of my appointments, so I hope that it will help you on the road to independence. Learn about your diagnosis and how it may affect you! This is, hands down, the most important step. It’s true when the say, nobody knows you like you know yourself. Before your scheduled appointment, bring a written list of questions and concerns that you may be seeking answers for. If you’re forgetful, like I am, this is a great way to stay organized and maximize the time you spend with your health care providers. Take notes! Jot down the important points that are mentioned during your appointment. If possible, ask your health care provider, at the end of your visit, for summary notes of the visit. Stay organized. Bring a medical record binder or folder with you when you go to your appointment. In there, include things such as doctor’s notes, scripts, medical records and insurance information. Bring a close family member or friend with you to your appointment. For more tips and resources for communicating with your health care provider, visit: https://www.nih.gov/institutes-nih/nih-office-director/office-communications-public-liaison/ clear-communication/talking-your-doctor www.gottransition.org
By Steven Nguyen
We want to make you a Star!
Families Helping Families of Greater New Orleans would like to welcome Sharon Blackmon, our new Community Outreach Consultant. Sharon and her husband Tommy will soon celebrate their 10th wedding anniversary. Their son, Ernie, is a senior at Belle Chasse High School; their daughter, Julia, is about to finish Pre-K and will start at Belle Chasse Primary in the fall. Sharon has a degree and many years of experience in Music Therapy, working in hospitals and the public school system. She became a work-from-home mom in 2012, creating an online retail business and staying home with Julia. When she decided to re-enter the workforce and take on a career change, continuing her work with people with disabilities was a top priority. She has been a staunch advocate for Ernie, who does not speak, for many years and has benefited greatly from the training and peer support offered by Families Helping Families. I guess they figured if they couldn't get rid of me, they may as well hire me! ~ Sharon Blackmon Sharon's son Ernie is also the cover model for the May 2018 edition of Exceptional Times.
Continued from p.4
We need you! Would you like to see your child, sibling, or family on the cover of our Exceptional Times Digital Magazine? Would you like to see your child, sibling, or family featured in one of our social media ads? On products we create for families and professionals? Do you have some great high resolution pictures of your child, sibling, or family? Send us your best pictures and let us decide if we can use them. All pictures need to be emailed in an attached file to Bebe at bbode@fhfofgno.org. Please only send jpeg and png formats. Professional and iPhone pictures are good, as long as they are high quality photos.
Introduction to Special Education - Do you suspect your child could benefit from special education and related services? If you are still in the suspecting stage or if your child is currently being evaluated or has already been evaluated, this is a great webinar for you. We will take you through the philosophy of special education, the laws, evaluation process, and ultimately an IEP. Date: Thursday, May 3, 2018 Time: 10:00 am – 11:00 am Audience: Parents, Caregivers, and Professionals of School-Aged Children/Students. Registration link: http://tinyurl.com/y8jrjp3u Basic Rights in Special Education - Whether you’re new to special education or have been involved for a while, this workshop is for you. This presentation provides families with an introduction to their rights and responsibilities as parents of children with special needs under the Individuals with Disabilities Education Act (IDEA). Parents begin to identify dreams and goals for their children, understand laws and learn advocacy strategies that will help them help their children reach those goals. Date: Thursday, May 3, 2018 Time: 12:00 pm – 1:00 p.m. Audience: Parents, Caregivers, and Professionals of School-Aged Children/Students. Registration link: http://tinyurl.com/ybydf5ou Anatomy of an IEP - Like a biology student, this presentation will dissect the parts of the IEP document and examine their functions individually, learning their meanings and application. It will provide constructive and practical tips to help create an IEP that supports all of the student's needs. We will explore the parent’s role in the IEP process and learn the basics of their child’s right to special education. services, the process of developing special education plans, and the parent’s role. Co-Sponsor: Families Helping Families of Acadiana Date: Monday, May 7, 2018 Time: 10:00 am – 11:00 am Audience: Parents, Caregivers, and Professionals of School-Aged Children/Students. Registration link: http://tinyurl.com/y925pblq The ABC’s of ESY - This training provides an overview of the ESYP process for children with disabilities. Some questions (and answers) that will be discussed include: what is ESY, how does a child qualify, and what are the options? Date: Monday, May 7, 2018 Time: 9:00 pm – 10:00 pm Audience: Parents, Caregivers, and Professionals of School-Aged Children/Students. Registration link: http://tinyurl.com/ybyojlxn Understanding the Importance of Inclusion - Why is inclusion of children with disabilities in schools, classrooms, and communities important? This webinar answer that question. It explores what inclusion is and is not, who’s involved in making meaningful inclusion successful, and its underpinnings in federal law. Co-Sponsor: Families Helping Families of Southwest Louisiana Date: Wednesday, May 9, 2018 Time: 11:00 am – 12:00 pm Audience: Parents, Caregivers, & Professionals of School-Aged Children/Students. Registration link: http://tinyurl.com/y7fstclj IEP Tips - This webinar features tried and true tips on how to positively advocate for your children, strengthen the relationships between parents and service agencies, and help create the appropriate IEP program. This webinar is perfect for families looking for ways to make the IEP meeting a more positive experience for everyone involved. Date: Wednesday, May 16, 2018 Time: 10:00 am – 11:00 am Audience: Parents, Caregivers, & Professionals of School-Aged Children/Students Registration link: http://tinyurl.com/ya2hs9q7 Section 504 and Transition: The Bridge from High School to Postsecondary Services - In this webinar, we will assist you to understand the ITP process as it pertains to postsecondary education and other related services. We will also provide an overview of programs and resources available to your child entering postsecondary education or employment. Co-Sponsor: Families Helping Families of Southwest Louisiana Date: Saturday, May 19, 2018 Time: 10:00 am – 11:00 am Audience: Parents, Caregivers, Youth, & Professionals of School-Aged Children/Students. Registration link: http://tinyurl.com/y93k7s8o Developmental Disabilities Services available for Children - In addition to waiver services, Louisiana offers several programs for children with developmental disabilities. Some of the programs include Family Flexible Funding, EPSDT, and Individual Family Support. Join us to learn what other services are available for your child with a developmental disability and learn how waiver services are changing in Louisiana. Guest Presenter: Karen Scallan, Certified Parent Support Provider, Special Needs & Parent Support Services of LA, LLC Date: Tuesday, May 22, 2018 Time: 7:00 pm – 8:00 pm Audience: Parents, Caregivers, & Professionals of School-Aged Children/Students. Registration link: http://tinyurl.com/y7ntej8v Accommodations vs. Modifications - Meeting after meeting, parents and teachers use the words “accommodation” and “modification” almost interchangeably when discussing IEPs and student needs. If understood and used correctly, these words can greatly impact the success of a child’s educational program. Get answers to these questions and more: How can accommodations and modifications help my child in the general education classroom? How is it included in IEP and which accommodations are provided for state testing? Date: Thursday, May 24, 2018 Time: 10:00 am -11:00 am Audience: Parents, Caregivers, & Professionals of School-Aged Children/Students. Registration link: http://tinyurl.com/ybalnful Addressing Bullying in School - The purpose of the webinar is to define and discuss the meaning of bullying, outline why it is important to discuss bullying in the school settings and why students with autism spectrum disorders are at risk and outline what we can do to prevent children from being bullied or becoming bullies. Co-Sponsor: Families Helping Families of Greater Baton Rouge Guest Presenter: Marcus Hibbard, MA, BCBA, LBA, Clinical Supervisor, Center for Autism Related Disorders (CARD) Date: Wednesday, May 24, 2018 Time: 12:00 pm – 1:00 pm Audience: Parents, Caregivers, & Professionals of School-Aged Children/Students. Registration link: http://tinyurl.com/y7vk4nqk
May 2018 Webinars
Do you have a favorite T-shirt or pair of jeans that transforms you and makes you feel confident -- makes you feel like you? That's because what you wear can affect your mood, your health and your self-esteem, says fashion designer Mindy Scheier. Inspired by her son, who was born with a degenerative disorder that makes it hard for him to dress himself or wear clothing with buttons or zippers, Scheier set out to make clothing that works for everyone, including the differently abled. Learn more about how she's made fashion history by producing the world's first mainstream adaptive clothing line. This talk was presented at a TED Institute event given in partnership with Tommy Hilfiger. TED editors featured it among our selections on the home page. Read more about the TED Institute. Mindy Scheier is the founder of the Runway of Dreams Foundation. Prior to launching the nonprofit, Mindy spent over 20 years working in fashion as a key member of the design team for the INC collection and stylist for Saks Fifth Avenue in New York City.
How adaptive clothing empowers people with disabilities | Mindy Scheier
SSI: Protect Yourself Before You Wreck Yourself
At a Glance: 5 Factors of Emotional Intelligence Emotional intelligence (EI) allows children to act on feelings in an effective way. This key ability can help kids with learning and attention issues work through their challenges. Take a look at these 5 aspects of having EI. Also available in Spanish. Teaching Emotional Intelligence in Early Childhood Emotional intelligence is related to many important outcomes for children and adults. From the National Association for the Education of Young Children (NAEYC). Self-Awareness Worksheets for Young People There's a worksheet for younger children, and there's another for tweens and teens. Both are available in English and Spanish (Hojas de ejercicios de autoconsciencia para niños). The Importance of Self-Care Don't forget about yourself! These TED talks offer simple ways to stay healthy--both emotionally and physically.
Resources for Families
Are you ready for adult responsibility? The video shown above is from Rooted In Rights Storyteller, Yolanda Vargas, and explains how to get and maintain control of you Supplemental Security Income (SSI). Rooted in Rights produces videos and social media campaigns exclusively on disability rights issues. Their team of filmmakers, writers, designers, and communicators includes the staff at their Seattle office and their extended network of digital Storytellers and bloggers who produce videos and write content from locations around the world. Their social media sites and website are platforms for people with disabilities, disability rights advocates and their allies to learn, connect and organize for change. Their mission is to tell authentic, accessible stories that empower our community to advocate for disability rights. To see more Storytellers and learn more about Rooted In Rights, visit them on the web.
continued from page 5
e-Learning Mini Modules are formatted for all devices so even if you are at a ball game, dance practice or waiting for your dinner to arrive in a restaurant, you can log onto our website and watch one of our e-Learning Mini Modules in approximately 10 minutes. That's right - you only need about 10 minutes! The following e-Learning Mini Modules are currently available: What do you do when the school calls to pick up your child? What transportation services are available to my child with a disability? How can I prepare for my child's Individualized Education Plan (IEP) meeting? Individuals with Disabilities Education Act (IDEA) Basics What is Least Restricted Environment (LRE)? We hope these are useful to you and happy to be able to add additional ways for families to learn relevant information they need in to get their child the most appropriate education they deserve. CLICK HERE to go to our website and learn more about the e-Learning Modules!
Ernie is the son of Sharon & Tommy Blackmon. He will turn 20 years old in June and is the best big brother to his sister, Julia, who just turned 5 years old in April. Recently, Ernie enjoyed attending his prom and looked amazing in his tuxedo. He also has a vast collection of fedora hats that he rocks! Looking good, Ernie!
Cover Model: Ernell "Ernie" Addison
The 2018 Guide to Summer Fun for Families is a wonderful resource for families to use during the summer months. Louisiana is a wonderful place to live. All year long, there are so many attractions, festivals, parades, arts, museums, and events going on around our beautiful state. There’s never a dull moment! Inside this guide you will find special needs summer camps and many ideas for things to do and places to visit with your family throughout the summer. From museums, nature centers, and theaters… to activities at home. You will find endless possibilities for enjoyment, learning, and relaxation. This Guide is meant to be an Internet resource. Please review these offerings to determine if they suit the needs of your family. Before you personally visit any of the resources listed, please call or check the website listed for the most current information.
The Louisiana Parent Training and Information Center (LaPTIC) is a program of Families Helping Families of GNO and a grant from the US Department of Education; Office of Special Education (OSEP) as Louisiana's official and only statewide federally funded Parent Training and Information Center.
CHILD CARE ASSISTANCE NEW APPLICATION SUBMISSION PROCESS The Child Care Assistance Program is committed to a continued effort to efficiently meet the needs of children, families and childcare providers in Louisiana. A new CCAP application submission process has been developed to align both the online and paper application and to ensure the process of applying for services is as simple and convenient as possible. The new application submission process will capture all information needed to determine eligibility in the CAFÉ portal during the initial application submission. A recorded webinar on the new application submission process can be found here. If you are having difficulty using this new submissions process, please contact LDECCAP or call 1877-453-2721, your case worker, or the Provider Help Desk for assistance.
Any information provided by Families Helping Families of Greater New Orleans (FHF) and/or Louisiana Parent Training and Information Center (LaPTIC), its staff, and/or its volunteers is intended for informational and educational purposes only. Any information expressed or implied is not intended nor should be construed as legal, medical, or other professional advice. FHF and/or LaPTIC does not render legal, medical, or professional advice or recommendations; nor is legal, medical, or other professional advice implied by any information given. Any information provided should not replace consultations with qualified legal, educational, healthcare, or other professionals to meet individual or professional needs. Reference to any program, service, therapy, or treatment option does not imply endorsement by FHF and/or LaPTIC or by its organizational staff/members and should not be construed as such.
Request for Services Registry Dates Medicaid Waivers As of 12/22/2017 the following dates have been reached on the waiver registry, a.k.a. the waiting list. New Opportunities Waiver (NOW) - 08.18.2004 Children's Choice Waiver - 12.31.2006 Supports Waiver - 03.31.2015 Not sure where you are on the registry? Call 1-800-364-7828 http://www.dhh.louisiana.gov/index.cfm/page/136
700 Hickory Avenue Harahan, LA 70123 504-888-9111 800-766-7736 504.353-2350 fax info@fhfofgno.org fhfofgno.org