Free Webinars and Training P.16
TIMES
MAGAZINE
Exceptional
What's Going ON?
From the Executive Director, Mary Jacob UNITED WE STAND, DIVIDED WE FALL P.4
Occupational Therapy
The Endless Possibilities of Simple Toys P.5
ISSUE 14
APRIL 2019
he found it, his rainbow connection P.20
COVER STORY
EXCLUSIVE
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.
OUR TEAM Mary Jacob, Executive Director mjacob@fhfofgno.org - Ext. 207 Sharon Blackmon, Community Outreach Specialist sblackmon@fhfofgno.org - Ext. 208 Bebe Bode, Director of Public Relations bbode@fhfofgno.org - Ext. 226 Nicole Desroche, Information & Training Specialist ndesroche@fhfofgno.org - Ext.218 Liz Dumas, Administrative Assistant ldumas@fhfofgno.org - Ext. 202 Minerva Flores, Intake Specialist mflores@fhfofgno.org - Ext. 217 Laura S. Nata, Director of Peer to Peer Support 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 Jessica Rodrigue, Director of Training jrodrigue@fhfofgno.org - Ext. 204 Denise Sweatman, Director of Administrative Services dsweatman@fhfofgno.org - Ext. 203 Paul LeBlanc, Property Manager
BOARD OF DIRECTORS Gregory Brenan, CPA, CCIFP, CGMA Lisa Gennusa Ledet Jo Ann D. LoRusso, Ph.D. Denise Barrera, MPH, MSW Judith Otto, LOTR, CDRS Debra Dixon M.Ed.+30 Jedidiah Jackson Ashley Bourg
OFFICE HOURS Monday: 9:00 AM - 12:00 PM, 12:30 PM - 4:00 PM Tuesday: AFTER HOURS 9:00 AM - 12:00 PM, 12:30 PM - 8:00 PM Wednesday: 9:00 AM - 12:00 PM, 12:30 PM - 4:00 PM Thursday: 9:00 AM - 12:00 PM, 12:30 PM - 4:00 PM Friday: 9:00 AM - 12:00 PM
700 Hickory Avenue Harahan, LA 70123 504.888.9111 800.766.7736 504.353.2350 fax info@fhfofgno.org fhfofgno.org
COVER STORY - P.20 Pictured are Seth Bode & Ronnie Mains, Owner/President CRC Global Solutions
Exceptional Times
04 United We Stand, Divided We Fall 05 The Endless Possibilities of Simply Toys 07 JPHSA Celebrates 30 Years 08 Prom | The Right of Passage for ALL Students 09 Customer Service for Individuals with Disabilities 11 Managing Independence 13 Success Story - Rex Rodrigue 14 Jefferson Parish Community Resource Fair Scrapbook 15 SSI and SSDI, Oh My! 16 What's Going On? 18 GiveNOLA Day May 7, 2019 19 April Awareness 20 Cover Story: He found it, his Rainbow Connection 24 USAGov's Apps to Download Now 25 Resources for Families & Educators 26 Jefferson Parish Regional Advisory Committee Meetings 27 Operation Spark 28 Louisiana School Finder
CONTENTS
From the
Mary Jacob
Executive Director
"United we stand, divided we fall" is a phrase used in many different kinds of mottos, most often to inspire unity and collaboration. If we have a common mission, it makes more sense to stand together in hopes of finding a solution, than dividing ourselves into splintered groups that often are doomed to fail. The disability community might be a growing group, but we are still a small group in the grand scheme of things. For this reason, it is important that we all stand united on disability issues. Our collective voices are louder and farther reaching than our solo voice. When we divide ourselves into smaller subgroups, we often lose our voice and sometimes become more isolated. Yet, I still witness some disability groups splintered into subgroups and wonder if this really helps or hurts their overall purpose. April is Autism awareness month, and the Autism Community is one of those disability groups that seem to have the largest number of subgroups. So I wonder if there is a common mission, why the need for so many different beliefs? Even if some of these groups aren’t formal, it’s very evident when I speak to parents about their children with autism. With most disabilities, parents want the opportunity to network with other parents that have a child with the same disability. But in my experience, in the autism world, parents not only want to network with other parents that have children with autism; but they also want their networks to be aligned with their own ideology. They factor in things like: High functioning vs. Low functioning Verbal vs. nonverbal Aspergers vs. Autism Vax vs. Antivax Does defining your child into one group limit your collective voice? Does these factors really matter in the big picture? Is it possible for everyone to just agree that together we are a much stronger force and look for common ground? For the month of April, let’s all celebrate the wonderful gifts each person with autism brings to our community. Let’s celebrate their abilities and how they are the same, rather than different. Let’s stand united!
United We Stand, Divided We Fall
The Endless Possibilities
of Simple Toys
I would like to say that I am an occupational therapist who is fully prepared for anything 1000% of the time … but that was not the case one day. On this morning, I had left the house in a rush, forgetting my toy filled backpack that I usually bring when treating a client at a local day care. I showed up to the day care with the only toy I had randomly in my car (thank you pediatric OT life), a set of snap lock beads. I was about to have to entertain a two-year-old for an hour-long therapy session with only one toy. Challenge accepted. My goals for this client included improving range of motion, fine motor coordination and play skills. Hitting all of these areas while keeping a two-year-old interested in a single toy was a challenge that was going to require all of my creativity. Luckily, for the both of us, play is my specialty. I ended that hour with a fully engaged child begging for more, completely exceeding my own limiting expectations of what I could do with only one toy. This experience made me think about how often people take for granted the simple, open-ended toy. At first glance, these toys are less “exciting” than the complex, high tech toys most kids have on their Christmas lists. All there is to do with wooden blocks is stack them, right? Wrong! Simple toys overflow with educational potential and have such an important role in development. From addressing fine motor skills, to fostering imaginative play, to teaching spatial awareness, toys like blocks, cups, and beads have endless opportunity to teach your child valuable concepts. With a little creativity during play time, a simple toy can become your child’s favorite. I decided to take my success that day and challenge myself to write down at least 10 ways I play with toys that I use often. As I discussed in my article Teaching Your Child to Play in December’s issue, getting on the floor and engaging with children is of utmost importance for their development. Parents, why reinvent the wheel?! Here are some great ideas on how to play and engage with your child by expanding the use of these seemingly one step toys. These ideas can be made easier or more complex, depending on your child’s level of development. Snap Lock Beads: Pretend that you made a boat and move through the water Connect the beads and pretend your chain is a snake, moving through the grass Place a bead on your head and say “oooooooohhh!!!” to build anticipation as you let it roll off your head and onto the floor Hide the beads in sensory bins such as dry beans or dry rice, find them in order to connect them Connect the beads to make necklaces for each other Use your beads to roll and spin on the ground Pretend your beads are cars that are in a race Connect the beads to make hats for each other Sort the beads by color and count them Make patterns when connecting the beads Stacking Cups: Stack the cups and knock down the tower Pretend to cook and mix pretend batter in the cups Fill the cups with sand, dump it out, or pack the sand to make sand castles Pretend that you are having a picnic with imaginary food in the cups Sort the cups by color, and find other toys that are the same color to put in them Figure out how to put all the cups inside the biggest cup Make pretend castles out of your cups by stacking them in various ways Pretend that your cup is a hat Play with your cups in water to learn about volume Roll your cups to see how far they can go Wooden blocks: Stack the blocks and pretend it’s a rocket ship ready for take off, with “blast off” initiating flying through the air Make a bridge out of the blocks that toy cars can go under Take turns imitating different block designs that the other person builds Make a giant wall out of blocks Build pretend block houses Build as tall of a block tower as you can, and knock it down (classic) Make pyramids out of blocks Play Jenga and try to remove blocks from the structure without the others falling Make a train by lining up three blocks with a “smoke stack” on the top, and move along a pretend train track Make structures to balance other toys on top of The possibilities are endless! Try expanding the ways you play with a simple toy in your home. You’d be surprised how far you can take it with a little imagination. Have a question or a topic you’d like to see Rebecca write about? Comment on her blog (below) and she will be sure to cover it in future content!
Rebecca Connick is an occupational therapist at Crane Rehab Center- Pediatrics in New Orleans as well as an Early Steps provider. A certified user of The Sequential Oral Sensory (SOS) Approach to Feeding and a Mentored Clinician of the STAR Institutes's SPD Level 1 Advanced Intensive Mentorship program, Rebecca treats many children with sensory processing deficits and feeding disorders. For more educational articles by Rebecca, follow her blog at https://fingertips.home.blog/ or on Facebook @fingertipsblog.
JPHSA Celebrates 30 Years of Service to the Community
Staff and members of JPHSA’s Board of Directors were on hand to help commemorate JPHSA’s three decades of service to the Jefferson Parish community at a recent all-staff meeting. In 1989, the original legislation creating JPHSA was enacted and the first Board of Directors was appointed. Since then, JPHSA has been driven by a mission to help individuals and families in Jefferson Parish affected by mental illness, addictive disorders, and developmental disabilities to live full, healthy, independent and productive lives to the greatest extent possible for available resources. In recent years, JPHSA has also integrated primary care into clinical services through a Federally Qualified Health Center with sites in East and West Jefferson.
A right of passage for ALL Students
Did you go to your senior prom? I did not, but I went to another formal event where we dressed to the nines, wore pretty flowers and stayed out way past our normal curfew. It seems like the Junior/Senior prom was sort of a “rite of passage” when I was growing up. And even now, five or six years after high school (a-hem….), we all remember prom as one of the highlights of our high school experience. I guess I never really thought about my son going to the prom, sadly. It was one of those bad assumptions we (parents, and sometimes educators) make, thinking that our kids won’t get to enjoy the same things their typical peers enjoy. So, when my son’s para texted me this message last spring, I was momentarily taken aback: “Ernie’s prom info is in his backpack.” Huh??! Ernie? At prom?? And then this mama got excited!! I went into tux mode… planning mode… Over the top mama-mode!! And why shouldn’t Ernie go to prom? He loves music, loves being around people, LOVES dressing up, even dances and grooves to the beat! I have to say, it was a BLAST! After we took family pictures in the front yard, we all went out to dinner with friends, then headed over to the prom venue. Because of our son’s special nutritional and toileting needs, my husband was his “date” for the evening. We took pictures outside; we took formal prom pictures inside; I left and let the guys enjoy the rest of the evening. Ernie danced, he watched people, he visited with friends, and he grooved! They didn’t stay terribly late, but when I met them at the door of our home later that evening Ernie was coming down the sidewalk, wagging his head, laughing, and “talking” his special language at the top of his lungs! He was telling me all about it. I almost cried. So why shouldn’t “our kids” go to the prom? Or the 8th grade dance? Or the Winter Formal? I honestly wouldn’t have thought about it except that my son’s school took the initiative: they assumed that EVERY senior goes to prom, regardless of their physical agility or grades or abilities. I am so very thankful they did! We would have missed the making of a very special memory with a very special young man. Now I have to brag on my husband for just a minute. He teaches Special Education at the middle school level. A couple of years ago he had a student who was very interested in going to the 8th grade dance but was embarrassed because he didn’t really have appropriate attire. The teachers and support staff pitched in and brought things they knew he would need: dress pants, a shirt and tie, a belt, shoes, etc. Some had sons and brought things from home; others pitched in a few dollars or purchased items outright to make sure this young man could go and enjoy the dance. And he did! I’m telling you these stories so that we can hopefully bash those bad assumptions that we often make with our students with disabilities: yes, they DO want to go! And while dances and proms geared for youth with disabilities have their place, what “our kids” really want is to be included with their peers in school and community events. So let me encourage you, if your school has spring dances or other events coming up: look around your classroom. Make sure those kids’ parents have the information on upcoming activities. And make sure the parents know that THEIR child is welcome—even encouraged--to participate.
By Sharon Blackmon
PROM
By Mary Jacob
CUSTOMER SERVICE FOR INDIVIDUALS WITH DISABILITIES
Approximately 18% of our population has some sort of disability. This equals over 50 million Americans, all potential customers – customers that come with billions of dollars in discretionary income. Therefore, you want your business to be welcoming and accessible for everyone. An accessible business is not only more user-friendly for individuals with disabilities, but aging baby boomers and their family and friends will greatly appreciate it. How do you bring your customer service to a new level for individuals with disabilities? You need to consider all areas of the business. This starts from the time a customer arrives. Designated parking spaces for customers needing accessible parking is important. This is a common complaint I hear when people visit private offices or small businesses. Even when there is a designated accessible parking space, often it’s used by someone working at the business. If you have a curb or step up, you should have a ramp or curb cut in the event someone has a mobility disability. Parents navigating strollers will also appreciate these. The entrance of your building should be wide enough to accommodate a wheelchair and door handle should be reachable for someone sitting down. You should have at least one fully accessible restroom. A few years ago when I was looking for new office space, I was surprised by what some realtors defined as fully accessible. Ask yourself when you go into the restroom. Is it large enough to do a 360 degree turn around in a wheelchair? If there is a stall, does the door open out? Can someone in a wheelchair roll under the basin to wash their hands? Is the paper towel dispenser or hand dryer at a low enough level to reach if you are in a wheelchair? Just adding a handrail doesn’t make a restroom accessible. When a customer comes into your business, do you have service counters? If you do, are they low enough for someone in a wheelchair to be seen and be communicated with effectively? If the customer can’t communicate orally, think about how you will communicate with the customer. Individuals with disabilities want to be treated like any other customer – valued. Treat them with common courtesy and don’t patronize them. Some individuals need you to be a little more patient as they find the words to express themselves or answer questions. If the customer with a disability comes in with a companion or aide, you should still speak directly to the person with a disability. Not too long ago I was having lunch with two individuals with intellectual disabilities when the waiter asked me what they wanted to eat. My response was, I have no idea, why don’t you ask them. Always, always, always presume competence. Just because someone has a disability, doesn’t mean they can’t communicate or make decisions. Always use people first language. People first language emphasizes the person rather than the disability or condition, as in “person who has Down syndrome” rather than a “Downs.” Avoid terms such as handicapped, crippled, afflicted, retarded, or other descriptors that negatively describe a person with a disability. If you are unsure if or how to assist someone with a disability, ask. Most people are very aware of their abilities and when they need assistance. Also, service animals are not pets – they are working and should not be fed, petted or distracted in any way from their job. With the amount of people making on-line purchases, you will want to make sure your website is accessible. Don’t risk losing a sale because someone with a disability can’t navigate your website. Finally, make customers with disabilities feel welcomed and valued by training your staff on disability etiquette. Make sure your staff welcomes and treats everyone respectfully.
Our Executive Director, Mary Jacob, is a regular contributor of disability related articles for the Elmwood Business Associations (EBA) quarterly digital newsletter. This article was originally featured in the EBA Spring 2019 digital newsletter.
"I always knew that I wanted to go to college, but didn't start thinking about the logistics of this in any real way until I started applying. I was positive that I wanted to live on campus and not at home - I craved that independence - but also wanted to stay relatively nearby, because I didn't know how realistic my wish for independence was. I wanted freedom, but I wanted a backup available too." ~ Heather Tomko
Growing up with a disability meant a different kind of parent-child relationship than a lot of my friends. My parents were my parents, but until I left for college, they were also my sole caregivers. In some ways, it was great – there’s always someone around when you need help, and I never felt awkward or uncomfortable about anything that I needed help with. In other ways, it was a bit more of a struggle. When you’re a teenager and having an argument with your parents, you don’t want to turn around two minutes later and ask them for help with something. I always knew that I wanted to go to college, but didn’t start thinking about the logistics of this in any real way until I started applying. I was positive that I wanted to live on campus and not at home – I craved that independence – but also wanted to stay relatively nearby, because I didn’t know how realistic my wish for independence was. I wanted freedom, but I wanted a backup available too. Even though I didn’t go far, living on my own (in a dorm room) was a huge adjustment – more so than I could have ever imagined. My family and I were basically navigating this blindly – we didn’t have anyone to talk to who had done this before, so we were doing the best that we could. It was rough – I didn’t realize what an effect it would have on me until I got to my dorm and could not stop crying. I didn’t meet my new caregiver until I moved into my dorm and she showed up for her first shift – in hindsight, that was a huge mistake. After never having anyone else help me but my parents, I realized I had no idea how to explain to this new person everything that I needed done and the way that I wanted it done. And I had multiple people scheduled to help me – the thought of having to train all of them was suddenly incredibly overwhelming. Luckily, because I decided to stay nearby, my mom offered to come by for the first few scheduled shifts to help with the training. If I had to do it over again, I’d have a short meeting with each of the caregivers before they were scheduled to start, to meet them and go over the basics. That little bit of comfort would have gone a long way on my first day. I was lucky to have mostly reliable caregivers, but I was completely unprepared for the unanticipated call offs and changes. Sometimes a caregiver has to call off last-minute, and I didn’t realize how difficult it would end up being to fill those shifts. The overnight call-offs were always the worst – I’d have to call the agency multiple times to follow up, to make sure that they’d at least attempted to contact everyone that they could. Unfortunately, in these cases, it was often my mom who ended up being my caregiver those nights when the agency was unable to find anyone. This is when I was especially happy to be close to home. Would the agency have tried harder if they knew I didn’t have a backup in place with my mom? Maybe – but I don’t know, and I’m glad that I never had to find out the hard way. I adjusted to having other people help me fairly quickly, but the other part of that adjustment is being in charge of your schedule and these new people. College is a time when you’re testing out your independence – while I was doing that, and trying to make new friends, and study, and pick a major, I also had to learn how to be a manager of sorts. I had to keep on top of not only the schedule for my classes, but also the schedule for my caregivers – and often nudge the agency to remind them to send it to me. I had to keep track of when caregivers were coming and going, and call the agency if someone didn’t show up, to figure out what happened. While I chose to use an agency rather than hire caregivers independently because I didn’t want the bulk of the scheduling to be in my hands, it was not always as seamless as I imagined that it would be. I’m very glad that I lived away for college and that I was able to have the experiences that I did. But I encourage you to learn from my mistakes! If you can, find people to talk to who have gone through this and ask them about their experiences. Do as much as you can ahead of time – college is enough of an adjustment on its own; the better in control that you feel about your caregivers, the better you’ll feel about this big life transition on a whole. — by Heather Tomko @htomko
Managing Independence
Stop by and visit Families Helping Families of Greater New Orleans table at both of these upcoming events. We will be happy to see you!
The National Resources for Access, Independence, Self-determination and Employment (RAISE) Technical Assistance Center is a project of the SPAN Parent Advocacy Network and is funded by the U.S. Department of Education Rehabilitation Services Administration. The views expressed herein do not necessarily represent the positions or policies of the Department of Education. No official endorsement by the U.S. Department of Education of any product, commodity, service or enterprise mentioned on this website is intended or should be inferred. This product is public domain. Authorization to reproduce it in whole or in part is granted. While permission to reprint material from this website is not necessary, the citation should be: National RAISE Center@SPAN, (March 12,2019). Managing Independence, Newark, NJ, Heather Tomko. © 2018 RAISE Center
Rex Rodrigue
Success Story
I called Families Helping Families of Greater New Orleans (FHFGNO) because my son was not getting what he needed at his school. My son’s name is Rex. He is six years old and has Down syndrome. Rex spent most of his time in a self-contained classroom with nonverbal children at his school. He is nonverbal and receives Speech Therapy twice a week. When I called FHFGNO, I spoke with Nicole Desroche. I provided her with my son’s current evaluation and IEP. We met, and she went over both documents word for word. It took hours. She explained to me my rights as a parent and Rex’s rights as a student. With her help, I listed out everything I thought Rex needed to assist him with his education along with things he should already be getting. I brought all the information to his IEP meeting. There was a lot that needed to change, in Rex’s situation. I learned that Rex is entitled to anything I think will help him, including a communication board and Dynavox. I also learned that he should be getting more inclusion time than he is, and that the IEP is a federal document. If the IEP is not followed, the school is breaking the law. I can ask for an IEP meeting anytime I feel there is something that needs to be changed or discussed. FHFGNO helped empower me to understand the IEP process and what to do in order to get my son’s educational needs addressed. I no longer have to worry about what the school is doing because I know, and they know, that they must follow the IEP as it is written. Rex now has the resources and services he needs to reach his full potential. Because of FHFGNO, I feel certain that my son is getting a better education because they have given me the knowledge and tools I needed to advocate for my son now and in the future. Christen Rodrigue
SCRAPBOOK Click the arrow on the picture to scroll through the scrapbook and view some of the pictures from the event.
The Jefferson Parish Community Resource Fair for individuals with disABILITIES and their families, sponsored by Healthy Blue, took place last month in March. It was a day committed to providing information, resources, and support to families to ensure they are aware of all the services and supports available to them in our community. We had 70 exhibitors present with a wide variety of experience and services. We want to thank all the families who attended, Healthy Blue for sponsoring the event again this year, and all the exhibitors that participated.
Free WEBINARS
What's Going On?
Related Services - Children with disabilities are entitled to special education and related services. The IEP must contain a statement of the special education, related services and supplementary aids and services to be provided to the child. Participants will learn several critical elements used to determine what related services a student needs. Co-Sponsor: Autism Society of Greater New Orleans Date: Tuesday, April 2, 2019 Time: 11:00 a.m. – 12:00 p.m. Audience: Parents, Caregivers, and Professionals of School-Aged Children/Students. Social Interaction Strategies - Many individuals with ASD and related disabilities need support to experience social success. This webinar will review evidence-based strategies to teach and support social interaction skills across age levels. Join us as we share practical examples and explore resources. Guest Presenter: Julie Riley, Louisiana Autism Spectrum and Related Disabilities (LASARD), Project Coordinator Date: Thursday, April 4, 2019 Time: 11:00 a.m. – 12:00 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 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. Co-Sponsor: FHF at the Crossroads of Louisiana Date: Thursday, April 4, 2019 Time: 12:30 p.m. – 1:30 p.m. Audience: Parents, Caregivers, and Professionals of School-Aged Children/Students. Assistive Technology Tools to Support Classroom Challenges - This webinar will provide participants with information on a wide variety of assistive technology tools and devices designed to address challenges in reading, writing, and math. Participants will be taken through a continuum of the tools and how they can be integrated into the classroom. Guest Presenter: Kristie Stapler, Assistive Technology Facilitator, South River Assistive Technology Center Date: Thursday, April 11, 2019 Time: 10:00 a.m. – 11:30 a.m. Audience: Parents, Caregivers, and Professionals of School-Aged Children/Students. Getting and Keeping Your First Job - Getting and then keeping a job for someone with a disability can be tough. This training will go over why work is important, challenges for youth, the labor market, disability disclosure, accommodations and more. Co-Sponsor: FHF of Southwest Louisiana Date: Thursday April 11, 2019 Time: 12:30 p.m. – 1:30 p.m. Audience: Parents, Caregivers, Transition Professionals, Adult Service Providers, Youth with Disabilities and Adults with Disabilities. 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. Date: Saturday, April 13, 2019 Time: 11:00 a.m. – 12:00 p.m. Audience: Parents, Caregivers, Professionals of School-Aged Children/Students. 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 are accommodations and modifications included in IEP? Which accommodations are provided for state testing? Accommodations and Modifications can be a game changer for your child. Co-Sponsor: FHF of Northeast Louisiana Date: Monday, April 15, 2019 Time: 10:00 a.m. – 11:00 a.m. Audience: Parents, Caregivers, and Professionals of School-Aged Children/Students. Extended School Year (ESY) Services: Summer IEP Services - Did you know that data collected during the holidays often determine if your child will qualify for ESY Services? This training provides an overview of the ESY process for children with disabilities including how children qualify and why in many circumstances the school uses the holiday breaks in determining if a child will qualify for ESY. Co-Sponsor: FHF of Northeast Louisiana Date: Monday April 15, 2019 Time: 7:00 p.m. – 8:00 p.m. Audience: Parents, Caregivers, 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. Co-Sponsor: FHF of Southwest Louisiana Date: Wednesday April 24, 2019 Time: 9:00 p.m. – 10:00 p.m. Audience: Parents, Caregivers, and Professionals of School-Aged Children/Students. Who Needs a Surrogate Parent - The Individuals with Disabilities Education Act (IDEA) gives parents of children with disabilities an active role in planning their child’s educational programs and decision-making. However, sometimes the parent is not available and IDEA allows for a surrogate parent to fill this very important role. This training will go over the children eligible for a surrogate parent, who can be a surrogate parent and most importantly, who cannot be a surrogate parent. Co-Sponsor: FHF of Acadiana Date: Thursday April 25, 2019 Time: 11:00 a.m. – 12:00 p.m. Audience: Parents, Caregivers, Professionals of School-Aged Children/Students.
A P R I L 2 0 1 9
Join us for 24 hours of giving to benefit our local nonprofits and make a difference.
Now in it's 6th year, GiveNOLA Day is a 24-hour event hosted by the Greater New Orleans Foundation to inspire people to give generously to nonprofits making our region stronger, creating a thriving community for all. Families Helping Families of Greater New Orleans (FHFGNO) asks for your support on May 7th by making a tax deductible donation to our organization. FHFGNO gives parents of children with disabilities knowledge, support and confidence, always free of charge. Your donation will help us continue providing support to the over 6,000 request we receive annually. Our unique link to make your donation on May 7th is https://www.givenola.org/families-helping-families-of-GNO
GiveNOLA returns on May 7, 2019!
Alcohol Awareness Month Irritable Bowel Syndrome (IBS) Awareness Month National Autism Awareness Month National Child Abuse Prevention Month National Donate Life Month National Facial Protection Month National Minority Health Month National Sarcoidosis Awareness Month Occupational Therapy Month Oral Cancer Awareness Month Sexual Assault Awareness and Prevention Month Sexual Assault Awareness Month STD Awareness Month Women’s Eye Health and Safety Month National Public Health Week (April 1–7) World Autism Awareness Day (April 2) Beckwith-Wiedemann Syndrome Awareness Day (BWD) (April 6) National Alcohol Screening Day (April 11) Rape, Abuse and Incest National Network (RAINN) Day (April 5) World Health Day (April 7) National Youth Violence Prevention Week (April 8–12) National Youth HIV/AIDS Awareness Day (April 10) National Infertility Awareness Week (April 21–27) Every Kid Healthy Week (April 22–26) World Meningitis Day (April 24) National Infant Immunization Week (April 26–May 3) National Minority Cancer Awareness Week (TBA) World Immunization Week (TBA)
April Awareness
Beckwith-Wiedemann Syndrome Awareness. Join In Raising Awareness April 6, 2019 Around the World. Now is your time to join us and carry on this mission. A way to say Thank You to those who make today possible and the future brighter. Someone is waiting for information right now. Help make April 6th the biggest and best event ever! Sign up here to access the BWS Awareness Virtual Summit coming April 6th, 2019
World Autism Awareness Day. The twelfth annual World Autism Awareness Day is April 2, 2019. Joined by the international community, hundreds of thousands of landmarks, buildings, homes and communities around the world, light blue in recognition of people living with autism.
his Rainbow
By Bebe Bode
By Bebe Bode In May of 2014, our handsome son, Seth, graduated from Grace King High School with a Certificate of Achievement. At the time of his graduation, I wrote an article for the Exceptional Times Magazine, called Rainbow Connection. This story is a follow up to that article (URL from my LinkedIn page) which picks up from where we left off on our journey. TRANSITIONING TO ADULTHOOD Seth began a postsecondary program through Jefferson Parish Public School System (JPPSS) housed at Delgado Community College where he received his high school diploma through Act 833 in May of 2016. Once he exited this program, he had completely transitioned from the school system into the adult world. With all my years of training both personally and professionally, through FHFGNO, I was aware of the legalities of Seth's coming of age. After assessing his individual needs and our family's circumstances, we felt confident that we crossed our t's and dotted our i's with everything that he and our family needed for his future as an adult, i.e., creating a special needs trust, will, applying for SSI, and, during the interim, when he turned 21, applying for SNAP benefits for him. We have the New Opportunities Waiver (NOW) and are self-direction participants. I manage all of Seth's waiver services and supports. EMPLOYMENT Because of Seth's autism and his unique needs, we knew finding him employment would not be an easy task. He is very capABLE of having a job if given the opportunity. As his family, knowing his capABILITIES and talents, we wanted desperately for him to have a meaningful way to take care of himself before we are no longer here to do so. With this in mind, we prayed for God to grant us patience and give us guidance. We met with Louisiana Rehabilitation Services (LRS) to start the process of approval for Vocational Rehabilitation Services. Once approved for services through LRS, we chose an employment vendor to work with Seth in finding him a job. Unfortunately, it was not very successful for us. We went through a couple of different agencies and experienced the same circumstances, a high turnover rate among the job coaches to the point that we barely got started with one and then that person quit and we started with another, then, another, etc. Trying to navigate this was quite a stressful time. (This is a serious problem; we are not alone in our experience.) Time was flying by and Seth was still unemployed. My husband, Pat, and I were working in the background trying to find employment for him ourselves, talking with mangers at different places we frequented, talking and writing letters to legislators, trying to find volunteer work to keep him busy, working full time jobs, taking care of Seth's needs, our son Parker's needs, and caring for an aging father. All the balls were in the air and if they landed, we would be buried in the ball pit from hell. TAKING THE BULL BY THE HORNS Inspired by Jeannie and Lucas Doiron's story and the company they started, Lucas Delivers, we talked about opening our own business. So, we put our heads together and with some prodding from our son Parker, we decided on Pralines and named it, "Pirogue Praline Company." Since we had an idea for the company, we thought about ways that we could incorporate Seth’s gifts and talents, expand them, and honor his abilities; making him an intricate part of the business as well as giving him pride in his contribution. Then we began to experiment with adding flavors to the traditional praline, this would be our way of adding interest to our product. We also decided on what our mission would be; once our company gets off the ground we want to hire other individuals with disABILITIES and give them the opportunity to show that they are talented, capABLE, reliABLE, and sustainABLE employees. We called it our “Purple, Green and Praline DREAM!” Wanting to see how others would respond to our flavors, we started bringing them to grocery stores, friends businesses, and business acquaintances, and the response was wonderful. They loved our pralines, loved our story, and fell in love with Seth. He began taking ownership of his role in the company. It was super exciting to see! He and Parker began doing the packaging and labeling, organizing the different flavors and took part in the deliveries. Then right before our eyes our son who struggled socially because of his autism, was turning into a social butterfly. We just watched in astonishment as he went and introduced himself to people when we were at an event or delivery, offered them a praline, and wanted to take pictures with everybody. He even named himself the "Praline King." We laughed so hard; it was so cute. We posted many pictures to Facebook and in each one his smile grew bigger. While Pat and Seth were out on a praline delivery to his friend Michelle's business, they were talking about how things were going with the company and she recommended that they go stop by CRC Global Solutions and see Ronnie Mains, and they did. Ronnie met with Pat and Seth, heard our story and the reasons why we were starting the company and it resonated with him. He respected what we were trying to do as a family for our son and others with disABILITIES. He tasted the pralines and thought they were unique and delicious. He met with us shortly after the initial meeting and decided to take us under his wing and help us get our company off the ground. Ronnie is a strong believer in giving back to the community and has done so for years both personally and through his non-profit organization, CRC We Care, We Share. He wanted to help us make this happen and became just as passionate about it as we are. Mike Hoss of Hoss Communications heard about what our company was trying to do and contacted us. He featured us on a segment of his "Down the Street" series that aired on Channel 4 WWL-TV. After the segment aired, our phone and Facebook Messenger started ringing off the hook with people wanting to buy our pralines, meet our family, support us, and offer us advice. The outpouring of support we received was amazing. THE RAINBOW CONNECTION While we were meeting with Ronnie about the praline company, we began discussing the frustration and lack of employment opportunities out there for Seth and others with disABILITIES. We started talking about all the things Seth could do, alphabetize like the wind, amazing organizational skills, phenomenal memorization skills, focused, quick learner, etc. After the meeting Ronnie said, “Let me show you something.” He took us upstairs to his accounting department and he introduced us to his CFO, Brittany Hallila. She showed us a desk with a massive amount of invoices on it that needed filing. Brittany and the accounting staff had too much other work to do and the filing just kept piling up. Ronnie said, “Do you think Seth could file these?” I said, “Sure, as long as the files are clearly labeled.” We went in the file room and opened the drawers and all the files had perfectly typed labels. I was like - whoever did this is my best friend because this is perfect. We got some of the invoices, I showed Seth what to do, and he did it, no problem. Ronnie hired Seth on the spot and said, “He can start after Labor Day. We meet with his right hand lady, Myra Eyman, to fill out the paperwork he needed so he could start. Myra hooked him up with his CRC company work shirts, we sat and talked about Seth and discussed some of his routines and other things we felt that she should know. BTW, Myra fell for Seth the first day she met him and he recited the Beauty & the Beast monologue for her. We felt comfortable knowing that Myra would be there to support him. She said, he’s got this, I got this, she loves Seth, and we didn’t need to worry. Pat and I were speechless. All we could do was cry. We talked to Seth more when we got home about working at CRC and that he would be starting out working one day a week for 3 hours on Tuesdays. He asked if he could work on Tuesdays and Thursdays. Again, we were speechless. We called Myra to see if it was okay and it was. Seth was so excited about working. He started his first day on September 4, 2018, and did a wonderful job. Myra sent us text messages and pictures so we could see how he was doing. She was so encouraging and thoughtful. His second day at work went great as well. In the two days and six hours that he totaled for the week, he filed every single invoice that was on the desk the day he got the job. I could have never done that. When he got home, he told us that Mr. Ronnie told him he was proud of him. More tears from mama and daddy followed. The young man who did not have a job now has two. One with CRC and one with his own company, Pirogue Pralines. We could not be prouder! Ronnie saw a need in his company and met that need by carving out a position for Seth. Now, his accounting department doesn’t have to take the time to get all the filing done and can be more productive in their daily work without that worry. He has been working at CRC for the past 7 months. His work responsibilities have grown and he has learned so many new and valuable employment skills. He has grown so much since he started there. He is more confident, talkative, happy, independent, and mature. He is comfortable in the environment, made many new friends, and all of them accept him as is. Whatever events, activities, or parties the company has, he is included. What is beautiful about this truth is they never once tried to change Seth. Not once have they tried to change his routine or to conform him to fit in. He fits in fine as he is. They accept and appreciate that he is who he is and they love him. We are so thankful to and for Ronnie for believing in our son and opening the door of opportunity for him that was closed for so long . Myra has been an angel and we couldn't be more grateful to her and the entire CRC family for embracing our son and giving him a home in the workplace. When you've prayed for something for a long time and you see it come to fruition right before your eyes, you know God has brought you too it and blessed it with his abundant love. So, to my sweet son, keep finding those rainbows and letting everyone know. You will alway be “braver than you believe, and stronger than you seem, and smarter than you think.” I love you to infinity, and beyond.
He Found It,
Connection
Pictured are Seth Bode & Michelle Yenni
Pictured are Myra Eyman, Seth Bode & Brittany Hallila
Pictured are Myra Eyman, Seth Bode, & Ronnie Mains
Seth working at CRC
USAGov’s 5 Apps to Download Now
From health and housing to student aid and safety, helpful federal information and services are as close as your mobile app store. Check out USAGov’s list of the top five government apps to download now: CDC’s Milestone Tracker: This easy-to-use app from the Centers for Disease Control and Prevention helps you track your child’s development from age two months to five years. Photos and videos in the app illustrate each milestone and make tracking them fun. (iOS, Android) USDA FoodKeeper: Is that still good? Every year, billions of pounds of food go to waste because consumers aren’t sure of its safety. This app from the U.S. Department of Agriculture can help you use food at peak quality and reduce waste. (iOS, Android) myStudentAid: Are you ready for college? Filling out the student aid application is as important as applying to your top school. Learn if you qualify for aid or loans from the federal government by filling out the FAFSA application. Students and parents can now complete the 2019–20 FAFSA using the myStudentAid app. (iOS, Android) FEMA App: Hurricane and wildfire season is around the corner. Are you ready? This app is your one-stop-shop with tools and tips to keep you safe before, during, and after more 20 types of disasters. Locate shelters and find out where to contact FEMA at disaster recovery centers. (iOS, Android) HUD Resource Locator: Looking for housing assistance? This easy-to-use app helps you find commonly-requested federal housing resources in your community. Get information on HUD programs, contact resource providers, find homeless services, and more. (iOS)
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Students With Disabilities May Be Collateral Damage in College Admissions Scandal Earlier this month, Americans were made aware of a number of wealthy families allegedly abusing the college admissions process by faking disabilities, cheating on admissions tests, and bribing college officials. The alleged scheme is incredibly discouraging and does a serious disservice to students who have real disabilities and rely on accommodations in school. Read NCLD's full statement on the issue and hear directly from student disability advocates about the potential impact. Two New Resources to Empower Students With Disabilities and Their Peers in Higher Education - NCLD, the American Council on Education (ACE) and the American Association of University Administrators worked together to develop two new resources designed to support university faculty and university administrators as they create environments where students with disabilities are more empowered to exercise self-advocacy and self-determination. How Do the Trump Administration’s Higher Education Act Reauthorization Priorities Match Up With NCLD’s? Also this month, the Trump administration announced its goals for revamping federal higher education policies through a reauthorization of the Higher Education Act (HEA). Unfortunately, the priorities completely miss the mark for students with disabilities, failing to mention the issues that are most important for them. As NCLD continues to advocate for a strong and comprehensive HEA reauthorization, students with disabilities will remain front and center. Go deeper on NCLD's HEA reauthorization priorities. Social and emotional learning (SEL) is more than just a curricular add-on–it’s an integral part of helping students learn empathy for their peers and create safe spaces for everyone to learn. Creating a positive school climate goes a long way toward establishing safe and happy learning communities. Two recent reports from the National School Climate Center (NSCC) offer some real-world examples from schools and insight from thought leaders to support and drive school climate improvements. Screened Out? How Some States May Limit the Schools, and Students, Identified for Support - Under the Every Student Succeeds Act (ESSA), states have reimagined their school accountability systems and come up with new ways to identify schools for support and improvement. Although the federal law allows some flexibility in designing these methodologies, it requires states to identify schools for three categories of support: comprehensive, additional targeted, and targeted support and improvement (CSI, ATS, or TSI, respectively). ABLEnow accounts help individuals with disabilities save money to pay for qualified expenses, without being taxed on the earnings – and in most cases, without losing eligibility for certain means-tested benefit programs. Visit About ABLEnow to read about the origins of this groundbreaking program that’s helping thousands of people nationwide dream, save and achieve.
What should educators keep in mind when engaging with families of students with intensive needs?
In another new “Voices from the Field” video, Lindsey Jones, CEO of the National Center for Learning Disabilities (NCLD), shares five considerations for educators to effectively engage the families of students with intensive needs, including those with disabilities. She encourages educators to consider emotion and assume best intentions, use a strengths-based approach, think about the need for different communication styles and approaches, and understand the connection to the full school community for both students and families.
New Resource: Strategies for Scheduling: How to Find Time to Intensify and Individualize Intervention - Most educators agree that intensive intervention is beneficial for students with significant academic and behavior needs. However, finding time within the school day is often a barrier to students receiving these interventions. This new resource from NCII offers strategies for finding time to intensify and individualize interventions within the constraints of busy school schedules. Strategies include intensifying interventions without adding more time, finding minutes hidden in the day, and replacing an existing activity. This document also presents additional resources and examples related to structuring schedules to provide time for intervention, as well as questions to guide conversations about scheduling. View the resources.
Resources for FAMILIES & EDUCATORS
The following meetings will be held at Jefferson Parish Human Services Authority 1500 River Oaks Road, Suite 200, Harahan July 30, 2019
Regional Advisory Committee (RAC) Meetings
Parents and Caretakers of individuals with developmental disabilities, individuals with developmental disabilities, and concerned citizens are invited to attend these meetings. All guest will have the opportunity to make public comments about developmental disability topics.
The following meetings will be held at Jefferson Parish Human Services Authority 5001 West Bank Expy., Room 118, Marrero April 30, 2019 | October 29, 2019
ADULT WORKFORCE Our 60-hour Introduction to Programming Bootcamp is a deep dive into JavaScript, functional programming, and basic web development. Bootcamp prepares students for entry into our three month Immersion program. Our Immersion program is more rigorous and time-consuming than most educational programs or full-time jobs. Over the course of 3 months, students learn how to think like a software engineer and gain all of the relevant skills needed to enter into a career as a full-stack engineer. Learn more.
OPERATION SPARK 2539 Columbus St, 3rd Floor New Orleans, Louisiana (504) 534-8277
HIGH SCHOOL The High School to High Wage program provides an introduction to computer programming and is designed for students with little to no prior experience in coding. It aims to teach students the core concepts of computer programming, basic front-end web development skills, and provides students with an understanding of the role computation can play in solving problems. Learn more.
Operation Spark is opening a new door to prosperity for low-opportunity individuals by presenting the fastest route to a career in software development.
A CAREER FOR EVERYONE The field of software development is quite wide. And so no matter your interests or apptitude, there's certainly a career for you in software development. You just need to build a few apps with an awesome team to start discovering all that software has to offer. The skills involved in building mobile video games and apps are quite varied, including application design, game mechanics and user experience, visual and sound design, computer engineering of various sorts, quality assurance, project, product and cost management, content management and public relations of all kinds. And each of these skills lead to careers, careers with futures - for example, an entry level quality assurance analyst is a well paying position, and can lead to management or a career as a UX designer. Working in teams, inherently a part of software development, also introduces youth to effective means of communication and conflict resolution. The Operation Spark model is simple: By introducing young adults to this wide set of skills and helping them apply these skills in building simple projects, something as engaging to today’s youth as a mobile video game or app, participants may just discover a very employable field about which they are passionate. And for youth, developing a passion is key to positive self development, encourages self learning and the pursuit of a path into college or the workforce!
The Louisiana Department of Education is committed to helping families find the right school or early childhood center for their children, and providing them with helpful information about Louisiana’s schools. The Louisiana School Finder is an interactive, online tool that provides families with: school performance scores and early childhood performance ratings to show how well schools and centers are preparing students for the next grade-level; basic information about schools and centers such as their address, website, hours of operation, and principal or director’s name; and listings of course offerings, clubs, enrichment and extracurricular activities. To find out information about schools and early childhood centers in your area, visit www.louisianaschools.com, and type in a school or center’s name, or your zip code.
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.
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.
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! CLICK HERE to go to our website and learn more about the e-Learning Modules!
700 Hickory Avenue Harahan, LA 70123 504-888-9111 800-766-7736 504-353-2350 fax info@fhfofgno.org fhfofgno.org
The Office for Citizens with Developmental Disabilities (OCDD) has four developmental disability home and community-based waivers, New Opportunities Waiver (NOW), Residential Options Waiver (ROW), Supports Waiver, and Children's Choice Waiver have now been operationalized to a tiered waiver system of service delivery, which will allow for individuals to be supported in the most appropriate waiver. To learn more, click here.
