Webinars & Facebook Live P.8
What's going on?
APRIL 2018
TIMES
Exceptional
EXCLUSIVE
MAGAZINE
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
April 2018
Contents
04 From the Director 05 Like they know what love is 06 INVITATION - FHF of GNO GiveNOLA Day Luau 07 Grants for Home Modification: 16 Resources for Homeowners with Disabilities 08 Families Helping Families of Greater New Orleans Open House & Ribbon-Cutting Ceremony 09 What's Going On? April 2018 Webinars 11 Early Childhood Resources for Families 12 What is supportive decision-making? 14 E-learning Mini-Modules | 2018 Guide to Summer Fun 15 Families Helping Families of Greater New Orleans After Hours
From the
Mary Jacob
Executive Director
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To recap my February article – here we go again. The Louisiana Legislators met for a special session and accomplished absolutely nothing. Nada. Zero. That dreaded fiscal cliff I wrote about, well it is still there and probably closer to the edge than before. We are still facing a BILLION dollar deficit. We are still looking at the following potential cuts if the legislators do not prioritize these services to our most vulnerable residents: Elimination of Children's Choice and Supports Waivers Elimination of Long-Term Personal Care Services Elimination of Pediatric Day Health Care Centers Elimination of Supported Independent Living in the New Opportunities Waiver ( NOW) Stricter financial eligibility criteria for Medicaid long-term care services (impacting 57% of current home and community-based waiver recipients and ICF/DD residents) Significant reduction to behavioral health and addictive disorder services Reduction to Support Coordination in the NOW The time has come to speak up. The time is NOW! Contact your legislators and let them know what these services mean to your family. It is time to get off your tush and DO SOMETHING! If you have time to whine, use that time to do something more productive! I am amazed at the number of individuals that tell me on a regular basis what they need – but yet, NEVER calls, writes, visits, texts, or emails their legislator to tell them. I don’t mind sharing your stories, but to quote one legislator, “You are paid to do this. I want to hear from families that are impacted. I want to hear from people that are not paid to do this. “ They want to hear from YOU! Let them hear from YOU! Legislators are not unapproachable. Most are thrilled to hear from their constituents. But if they don’t hear from enough of you, they don’t know this is a problem they should be concerned about. So instead of blaming the legislators every time they make cuts to services, look in the mirror and ask yourself this question, “What did I do to educate my legislator?” The time has come for YOU to be the squeaky wheel! In other OCDD news, if you are on the waiver registry waiting list – have you heard about the Office for Citizens with Developmental Disabilities Community Meetings? Information will be shared about OCDD’s move to a tiered waiver system. If you are currently on the waiting list, you will definitely want to attend one of these community meetings to hear first-hand, how these changes will impact the waiting list. Over the past year, everyone on the waiver waiting list should have completed a SUNS assessment. This assessment will give you a score depending on your immediate need of services. These scores will determine where you fall in the tiered system. This is replacing the first come, first serve waiting list currently in place. If you did not participate in the SUNS assessment, you need to contact your local Human Services Authority or District immediately. Click here for a complete list of meeting locations. Thanks to everyone who came out and celebrated our Ribbon-Cutting and Open House on March 27. It was a great day celebrated by great friends of FHF of GNO. I hope everyone has a wonderful Easter.
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LIKE THEY KNOW WHAT LOVE IS
Many times when other school staff see us they’ll comment to us about this relationship like how funny they are or cute they are. But no one said anything demeaning until our a little bump in to his principal. Here’s the conversation: P: Y’all here for Joel huh? Me: Yep, it’s his IEP meeting day. P: Joel is something else! I see him all the time in the halls with his girlfriend. Y’all knew about Princess Peach right? Me: Yeah, they are so funny, Joel's gotta learn some manners though. He’ll only claim her on good days. P: Yeah, I see them holding hands, he’ll have his arm around her. This was followed by a laugh and the following statement that ruined the conversation: Like they know what love is! Me: Just like any other teenager right? P: Yeah but you know because of who they are. Me: *stares blankly* P: Okay, awkward silence, backs away and shifts her glance, then she leaves. What kind of statement is that? What does their disability have to do with their ability to love. I might agree teens in general may not know what love is but not really because I met my boyfriend 5 years ago in high school and we’ve been together ever since… You can’t tell me that people with cognitive/intellectual/developmental disabilities do not know what love is. It may not look the same but they can certainly love. I found an article on this topic and here’s what stuck out the most to me: “The capacity for people with developmental disabilities to live full, rich lives is often underestimated,” says The Arc San Francisco CEO Dr. Glenn Motola, “but love is found across the entire spectrum of the human experience and includes us all, people with disabilities and people without disabilities.” Read the whole story at Love, relationships and people with developmental disabilities: a valentine story. I found a study on love and people with intellectual disabilities and I think that it is very interesting and worth your time. “According to the findings of this study, the young adults with ID understand love very concretely. One of the most important findings was how positively they all perceived love and its importance in their lives. Love was considered important and valuable to themselves and to people in general as it was recognized as a crucial element of well-being.” I encourage you to at least read the results and summary of this study at ‘Everyone needs love’ – an interview study about perceptions of love in people with intellectual disability (ID). People have this misconception that people with disabilities do not love the same or even want the same kind of relationship that people without disabilities have. The truth is many of them want to have relationships and most never learn how to do in a healthy way which can lead to some serious problems. Don’t leave them out of the conversation about these topics.
by DOWNWITHJOEL
I recently had an encounter with Joel’s principal that left me a little shocked. My mom and I were waiting in the office for Joel’s IEP and the principal saw us and started a conversation. She recognized us and started talking to us about Joel and his girlfriend, we’ll call Princess Peach. Princess Peach and Joel are such a funny couple. She shows more affection and constantly sends home notes, drawings, and gifts for Joel. For the longest Joel would deny their relationship and now most days he says yes when asked if Princess Peach is his girlfriend. They have known each other since elementary school but were separated in middle school only to reunite in high school. It was written in the stars!
On May 1, thousands of residents in the Greater New Orleans area are going to show their support for their favorite nonprofit organizations during GiveNOLA Day, hosted by the Greater New Orleans Foundation. During GiveNOLA Day last year, more than $4 million was raised for local nonprofits, and we want to raise even more this year! We hope you will support Families Helping Families of Greater New Orleans (FHF of GNO) this year with a donation of $10.00. You can donate online from the comfort of your home, office, or cell phone OR you can come buy our office between 11:00 a.m. - 2:00 p.m. for our FHF of GNO Luau where we will have our computers ready for you to donate, a fabulous feast of delicious food, door prizes, and a great time with friends. We need you to help us with three things: Mark May 1 on your calendar for GiveNOLA Day and support Families Helping Families of Greater New Orleans. Help us spread the word! Tell you friends about GiveNOLA Day by directing them to www.givenola.org and sharing how you participated and why they should too. Invite your friends to explore www.givenola.org/families-helping-families-of-GNO to learn more about us and GiveNOLA Day. Become a GiveNOLA Day Champion and help us spread the word on May 1 so we can meet our goal of $10,000. Contact Bebe at 504-888-9111 or bbode@fhfofgno.org for additional information on getting more involved. We can’t wait to celebrate the difference your generosity will make on May 1!
LUAU
Join FHF of GNO MAY 1 for our
This resource was reviewed by members of the RAISE Advisory Partnership (RAP) and determined to be of “High Quality, High Relevance, High Usefulness” to Parent Centers. RAISE Center is a CPIR partner working with the seven (7) RSA-funded Parent Training & Information Centers to develop and disseminate information and resources that increase their capacity to serve youth and young adults with disabilities and their families. Link to RAISE Center for more Transition-related information.
Grants for Home Modification: 16 Resources for Homeowners with Disabilities
Every year, more Americans living with disabilities are able to call themselves homeowners. Thanks to support and legislation such as the Americans with Disabilities Act (ADA), having a home to call one’s own is now an achievable dream for more people than ever before. For many individuals, purchasing a home is only half the battle, since the nature of someone’s disability can impact many areas of life – including the way he or she accesses, maneuvers through, and enjoys activities at home. That’s where the option of home modification comes into play. Whether you love the house you’re currently in or have plans to build a home that’s more accommodating to your disability, there are many different home modifications you can choose to implement. If you have stairs in your household but depend on the use of a wheelchair, a beneficial modification might be a chairlift. If a family member is blind, it might be useful to install grab bars in the shower. Or if you have a child with a mental disability, you may be able to better protect him or her from illness or injury by installing locks on cabinet doors that hold harmful chemical cleaners. While renters have the responsibility to provide reasonable accommodations to tenants with disabilities under the Fair Housing Act, many homeowners with disabilities can’t afford these expenses out-of-pocket. But did you know that there are many different national programs whose mission it is to provide you with a safe, comfortable home by donating grants to those in need? Furthermore, most states also have local programs for easing the financial burden of installing home modifications, or even building a new home that meets the needs of all of its occupants. This guide is designed to provide information on many of the available grants to improve your quality of life at home. You will find grants that are intended for all kinds of recipients, whether your disability is one you were born with or the result of a previous medical condition. You will find information on nationwide and state specific programs, as well as suggestions on what modifications may be the most rewarding for you. Remember, there’s a reason it’s called “Home Sweet Home,” and that’s because it should be a place you look forward to settling into.
Source: HomeAdvisor
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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: Tuesday, April 3, 2018 Time: 10:30 a.m. – 11:30 a.m. Audience: Parents, Caregivers, and Professionals of School-Aged Children/Students. 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: Bayou Land Families Helping Families Date: Thursday, April 5, 2018 Time: 12:30 p.m. – 1:30 p.m. Audience: Parents, Caregivers, and Professionals of School-Aged Children/Students. Advocacy 101 - As parents or advocates for individuals with disabilities, knowing how to advocate effectively is critical. Advocacy is defined as taking action in support or opposition of a cause or issue. Advocacy can be done through education, outreach, and grassroots organizing. This training will provide you the basics on how to become an effective advocate. Co-Sponsor: Families Helping Families of Southwest Louisiana Date: Monday, April 9, 2018 Time: 10:00 a.m. – 11:00 a.m. Audience: Parents, Caregivers, and Professionals of School-Aged Children/Students. Special Education FAQ - Can the school send home my child’s IEP for me to sign without a meeting? Can the school suspend my child with an IEP? What happens if I disagree with the IEP team? Can the school keep calling me to pick up my child due to meltdowns? Get answers to these questions, and more in our Special Education Frequently Asked Questions training. Date: Monday, April 9, 2018 Time: 9:00 p.m - 10:00 p.m. Audience: Parents, Caregivers, and Professionals of School-Aged Children/Students 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: Saturday, April 14, 2018 Time: 10:00 a.m. – 11:00 am Audience: Parents, Caregivers, and Professionals of School-Aged Children/Students. IEP Tips and Pointers - 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. Co-Sponsor: Families Helping Families of Southwest Louisiana Date: Wednesday, April 18, 2018 Time: 10:00 a.m. – 11:00 a.m. Audience: Parents, Caregivers, and Professionals of School-Aged Children/Students. Toilet Training for Individuals with Autism and Other Developmental Disabilities : Having Success with Toilet Training - Toilet Training can be a very challenging event in the life of the individual, the family, and caregivers. This workshop focuses on a very effective and efficient method of conquering the toilet training process. Participants will learn how to create success through incorporating techniques for managing behavior and teaching useful skills relevant to Toilet Training. Co-Sponsor: Families Helping Families of Greater Baton Rouge Guest Presenter: Daniel NoackLeSage, M.A., BCBA, LBA, One Step at a Time Behavioral Services Date: Wednesday, April 18, 2018 Time: 7:00 p.m - 8:00 p.m. Audience: Parents, Caregivers, and Professionals of School-Aged Children/Students. Schedule’s Tips and Tools for Creating Visual Schedules - Individuals with ASD often feel lost and anxious when daily activities are not clearly indicated or if the sequence of those activities is not understood. Teachers and parents may find themselves offering repeated cues and high levels of support to help the individual move from activity to activity. One solution - Create visual schedules that tell the individual where they should be, when they should be there, and what they will be doing. This webinar will provide a step-by-step process for creating and using visual schedules that reduce anxiety and frustration while supporting independence from adult-delivered prompts. Co-Sponsor: Families Helping Families of Greater Baton Rouge Guest Presenter: Sheyla Bhatt, Ed.D., Program Facilitator, Autism, Exceptional Student Service, East Baton Rouge Parish Schools Date: Thursday, April 19, 2018 Time: 12:30 p.m. – 1:30 p.m. Audience: Parents, Caregivers, and Professionals of School-Aged Children/Students. Understanding the Importance of Inclusion - Why is the 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 are involved in making meaningful inclusion successful, and its underpinnings in federal law. Date: Tuesday, April 24, 2018 Time: 1:00 p.m. – 2:00 p.m. Audience: Parents, Caregivers, and Professionals of School-Aged Children/Students. Extended School Year (ESY) Services - Summer IEP Services - 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: Wednesday, April 25, 2018 Time: 10:00 a.m. – 11:00 a.m. Audience: Parents, Caregivers, and Professionals of School-Aged Children/Students. Let's Talk - We will talk about what you will need to know when it comes to Medicaid, Healthy Louisiana and Medicaid Waivers. Karen Scallan will bring us up to date. Guest Presenter: Karen Scallan,Certified Parent Support Provider, Special Needs & Parent Support Services of LA, LLC Date: Wednesday, April 25, 2018 Time: 8:00 p.m. - 9:00 p.m. Audience: Parents, Caregivers, and Professionals of Adults and School-Aged Children/Students.
April 2018 Webinars
Families Helping Families of Greater New Orleans would like to welcome, Nicole Desroche, our new Information & Training Specialist. Nicole has been married to her wonderful husband, Kenny, for the past 27 years. She has two great kids, Brooke who is a marketing major and her youngest, Brad, who is a senior at Riverdale. She was a stay at home mom but when she decided to enter back into the workforce she chose to work in the disability field because of her son. She was employed with Lifeworks for 12 years assisting individuals with disabilities find employment. We are happy to have her on our TEAM!
The Resilient Caregiver Parents of children with disabilities and special healthcare needs face both the reality of raising any child and the reality of the additional responsibilities that come from raising children with special needs. This article from e-Parent discusses why it's so important for caregivers to take care of themselves and gives valuable suggestions and tips. Evaluation Rights: What You Need to Know Getting your child evaluated for supports at school is a process. And you and your child have legal rights every step of the way. This article sums up 11 important legal rights to know if you're considering having your child evaluated. Also available in Spanish (Derechos legales en el proceso de evaluación: Lo que necesita saber). What is a Non-verbal Learning Disorder? When we think of learning disorders, we tend to think of dyslexia and other disorders involving language--that is, kids who have trouble decoding language and learning to read. But there is another, less well-known type of learning disorder that's not about verbal communication--hence, it's called non-verbal learning disorder. Learn more in this first article in a planned series from the Child Mind Institute. Video | Educating Young Children with Disabilities This 6-minute video is a little gem posted online by the Wisconsin Department of Public Instruction. It features parents and educators from a local Wisconsin school district talking about their journey of inclusion for students with IEPs in early childhood educational settings.
Early Childhood Resources for Families
What is supported decision-making?
Source: RAISE
MAKING YOUR POINT How to ask for help. Begin with what you have decided. (For example: "I and not happy with my current job, so I want a new one.") Think about WHO you want to help you. Teacher, counselor, parent, friends? Decide what type of help you want. (For example: "I want your help figuring out a few things I might be good at." Or, "I want your help with my resume," or "I want your help finding a job in the field of child care." The Autism Self-Advocacy Network (ASAN) has a 45-page guide offering an overview of supported decision-making and includes a section on how to ask for the help you want. The American Civil Liberties Union (ACLU) has produced this easy-to-use guide for people with disabilities and their families on how to make supported decision-making agreements. It includes non-binding written agreements that can structure the decision-making and make it easier for the person to get the help they need in the areas in which they want help. Learn more about guardianship and decision-making laws in LOUISIANA?
Gabby Castro’s story about supported decision-making, and what it has meant for her life.
Supported decision-making (SDM) is a tool that allows people with disabilities to retain their decision-making capacity by choosing supports to help them make choices. Q: What does supported decision-making actually look like? Supported decision-making will look different for everyone. It means finding supports to help a person with a disability understand, make, and communicate their own choices. When using supported decision-making, the person can execute a Supported Decision-Making Agreement that identifies their method of decision-making. This document can help doctors, bankers, lawyers, and other third parties to understand and accept the decision of the person with a disability. Q: What are some examples of tools used in supported decision-making? Examples of tools might be: Plain language materials or information in visual or audio form. Extra time to discuss choices. Creating lists of pros and cons. Role-playing activities to help the person understand choices. Bringing a supporter into important appointments to take notes and help the person remember and discuss their options. Bill payment tools such as auto-payments or bill management notification apps. Supported decision-making means helping a person understand, make, and communicate his or her own decisions. This will look different for everyone. PERSPECTIVE Let's take a deeper look at self-direction as it relates to decision-making, and exploring the differences of supported decision-making. We offer you not one, but TWO videos, including a family perspective.
The Mouat family talks about the opportunities and challenges of supported decision-making in the video produced by Disability Rights Texas.
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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!
Cover models are Raquel and Joel Castaneda. Check out Page 5 for Raquel's blog about her brother, DOWN WITH JOEL A Sibling Perspective: Spreading Love, Joy, and Encouragement for Down Syndrome.
The 2018 Guide to Summer Fun for Families is hot off the press. 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.
PUBLIC COMMENTS, PLEASE: Implementation Dates for Disproportionality Regs ED's Notice of Proposed Rulemaking To ensure the Department's "significant disproportionality" regulations effectively address this serious issue, the Department of Education is proposing to postpone the compliance date by two years, from July 1, 2018, to July 1, 2020. The Department also proposes to postpone the date for including children ages 3 through 5 in the analysis of significant disproportionality with respect to the identification of children as "children with disabilities" and as "children with a particular impairment" from July 1, 2020, to July 1, 2022. Read the proposed new rule and see where to submit your public comments. Deadline for submitting comments: May 14, 2018
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