2020-01 Exceptional Times

Free Webinars and Training P.20 TIMES MAGAZINE Exceptional What's Going ON? From the Executive Director, Mary Jacob THIS IS 2020! P.4 Occupational Therapy AN OT's REFLECTION P.8 ISSUE 23 JANUARY 2020 SMALL Town No More: Mama Bear is in the house! P.26 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. JANUARY 2020 BOARD OF DIRECTORS Gregory Brenan, CPA, CCIFP, CGMA Jo Ann D. LoRusso, Ph.D. Denise Barrera, MPH, MSW Debra Dixon M.Ed.+30 Jedidiah Jackson Ashley Bourg Michelle Archambault, CPA/PFS OUR TEAM executive director MARY JACOB mjacob@fhfofgno.org - Ext. 207 community outreach specialist SHARON BLACKMON sblackmon@fhfofgno.org - Ext. 208 director of public relations BEBE BODE bbode@fhfofgno.org - Ext. 226 information & training specialist NICOLE DESROCHE ndesroche@fhfofgno.org - Ext.218 administrative assistant LIZ DUMAS ldumas@fhfofgno.org - Ext. 202 intake specialist MINERVA FLORES mflores@fhfofgno.org - Ext. 217 director of peer to peer support LAURA S. NATA lsnata@fhfofgno.org - Ext. 209 cshs parent liaison THUY NGUYEN thuy.nguyen@la.gov 504.896.1340 phone | 504.896.1360 fax cshs youth liaison STEVEN NGUYEN steven.nguyen@la.gov 504.896.1340 phone | 504.896.1360 fax director of training JESSICA RODRIGUE jrodrigue@fhfofgno.org - Ext. 204 director of administrative services DENISE SWEATMAN dsweatman@fhfofgno.org - Ext. 203 property manager PAUL LEBLANC 700 Hickory Avenue Harahan, LA 70123 504.888.9111 800.766.7736 504.353.2350 fax info@fhfofgno.org fhfofgno.org Exceptional Times 04 This is 2020! 07 What are at home educational options? 08 An OT's Reflection 09 Jefferson Parish Community Resource Fair - Save the Date 10 What the heck is a waiver? 12 Caregivers 16 Tips to Reduce Screen Time 18 The Story of Data 19 La historia de datos: Un cuento sobre la educación inicial 20 What's Going On? 22 The State Complaint Process, Summarized 24 Working with Dolphins: A (W)Holistic Path to Career Discovery 26 Cover Story: SMALL TOWN NO MORE: Mama Bear is in the house! 30 Social Security Updates 32 Inclusion of Children with Disabilities in Early Childhood Programs 33 How to Deal with "Haters" 34 Resources for Families & Educators 36 January Awareness 38 LaDDC News: Council's 2020 Legislative Agenda 39 Know How You Can Travel With Medication - TSA Travel Tips 40 Louisiana School Finder 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 CONTENTS Cover Photo: Katie, Aaron, Coye, Connor, and Cooper Corkern I’m Barbara Walters and this is 20/20. Okay, I’m not Barbara Walters, but I have been waiting for over a year to be able to say, this is 2020. How did we get here so quickly? Wasn’t it just a few years ago we were all freaked out about Y2K and our computers crashing? Let’s be real – we were all ready for the world to end at the stroke of midnight on December 31, 1999. We all had visions of our life going up in smoke and at a minimum, our computers would surely self-destruct. If you just read that and thought, what is Y2K, let’s just say you are much younger than me. It’s hard to fathom two decades have passed already. It’s absolutely overwhelming when we think about the changes in the world over the past 20 years. Everything about how we live, work, play and shop have changed drastically. I’m not sure about you, but I definitely didn’t see any of it coming. Twenty years ago most of us had dial up internet (are you secretly making that annoying dial up sound right now?). Twenty years ago we were still letting our fingers walk through things like the white page phone book, Sears Christmas catalog, a good novel, and road maps. Now phone books are practically non-existent and Sears Christmas catalogs are completely extinct. You can still find good books and road maps, but most of us prefer to use electronic downloads for our kindles and MapQuest or GPS services to help us get places. Do you remember the first time you heard, “You’ve got mail?” It was music to our ears. We got so excited that someone wanted to email us. Email first killed faxing and eventually allowed you to stop all snail mail with the exception of sales flyers and political flyers. Twenty years later we now get so excited to get anything in the mail. It’s like, Oh yeah, I got my MasterCard bill today. We now seem to cherish those actual handwritten Christmas cards and thank you notes. Expecting an invitation? Stop checking your outside mail box and start checking your email inbox. Chances are you’ve been invited electronically through a website that does that or via social media. Today’s pennywise, timesaving people have figured out that paper invitations through snail mail is too time consuming and expensive when they have so many other options. Of course with every great invention comes a not so great one – spam. We probably now get more spam than we get legitimate emails. Our leisurely or hurried trips to the store to find that perfect gift or dress has now been replaced with ordering on-line or shopping at Amazon.com. The only reason we still go to the Mall is because the Apple Store is there. Thanks to Tesla, you can now put your semi-autonomous driving system on auto-pilot and have it deliver you to the Apple Store. Instead of a traditional grocery trip to our favorite store for milk and bread, we now do Wal-Mart pick-ups/deliveries or Shipt orders. We order our fast food on apps to be delivered to our home or work and telemedicine has replaced normal trips to a doctor’s office. At home entertainment has also significantly changed. I still have the old fashion under mount kitchen radio in my house. But now we stream music via our iPad to our Bose speaker from Pandora radio. We can play exactly what we want and no longer have to wait for the radio to play our favorite songs. More and more people have cut the cord and choose to watch television shows and movies on their devices versus the high costs of traditional cable or satellite. We now have endless numbers of channels to enjoy and so many streaming devices for shows that aren’t on traditional television stations. We can even record and watch shows when we want to watch them, not when the stations want us to watch them. I literally can still watch the Saints beat the Indianapolis Colts in Superbowl XLIV, just by a simple push of a button on my remote. I can watch, rewind, and relive over and over the Tracey Porter interception. Twenty years ago we read instructions on how to put things together and now we go to YouTube and search for a “how to” video. Who’s got time to read those instructions that hardly make any sense? Imagine nobody getting stuck putting things together wrong anymore, because YouTube gives you a complete show and tell on how to do it. Social media has become our go to place for any and everything. We don’t even care if it’s true or not – if it’s there, someone must believe it. It doesn’t matter if we are seeking advice on schools, recipes for a favorite gumbo, or complaints because somebody or a company did you wrong, social media has provided you a world-wide audience that you’ve never had access to before. We share, overshare and have transformed our own images with selfies and snapchat. Hashtags, raise your hand if the first time you heard this you were like, whaaat??? How did I miss out on the memo that explained a hashtag was the same thing as the number sign? #FeltSoStupid The thought of walking into a bank for anything sounds excruciating when all I need to do is take a picture of a deposit and use my phone app to handle all of my banking needs. I can pay bills, send money to family, transfer funds and open a new account, all in the comforts of my bathtub, if I choose to. Our world has been filled with instant gratification for everything and in a world where we preach about recycling, we are a one and done society. Our 50 inch television breaks, we just pitch it and buy a new one. Our tablet stops working – no problem. Just go buy another one. Cell Phones – can we talk about cell phones? It doesn’t matter your brand preference, cell phones have revolutionized everything about our existence. These tiny computers store every bit of important information we know, as well keeps us organized with calendars and emails and still manages to double as a camera. How many of you go into a tizzy if you forget your phone at home? Today, many homes don’t even have traditional phones. Babies are learning to swipe their fingers across the screen to open up mama’s favorite babysitter. Are you bored? Well, chances are you have at least a few games downloaded on your phone. You can check out at the store with your phone and you can even process someone else’s credit card payment to you with a cell phone. Let’s not forget about Suri, our favorite personal assistant that will do virtually anything for you. Just grab your phone and say, Suri……. Even if it’s 3 am, that girl is always awake and ready to accommodate. It was all about Suri until Alexa came to the scene. Alexa loves helping us out at home. With a simple down load of an app we can control our AC/Heat in our home, turn on and off lights, see who’s at our front door, and spy on our neighbors. It’s like Get Smart and Detective Gadget has collided and come up with the greatest, shiniest object ever and everybody wants it. Ironically, we are a society that all have a phone in the palm of our hand and rarely answer it when it rings. Because of the rampant abuse of shared information, if we don’t know who’s on the other end, we will probably ignore it. If it’s someone we want to talk to, they will leave a message. However, if we like you, you might just score your own unique ringtone or song. But in all honesty, we would prefer to just text or message you. Please don’t make me talk on this phone. If I get mad at you I can no longer slam down the phone and for any one that is too young to have enjoyed that – you have no idea what you missed out on. Without a doubt (at least in my opinion), cell phones have been the biggest change in the past 20 years. You can basically do just about anything with them – even talk if you chose to use it for that purpose. But it’s 2020 and most people prefer not to use them for talking so much anymore, so maybe it’s time we come up with a new name for them. I’m shooting for the name Tiny Gizmo’s. That’s it, in 2020 my cellphone will be renamed #TinyGizmo. Happy 2020 to everyone and I hope you and your Tiny Gizmo have a fabulous new year. by Mary Jacob, Executive Director This is What are at home educational options? by Mary Jacob Home-School program. This is when parents are responsible for providing the education to the child or parents belong to a home-school co-op, where there is a shared responsibility to educate your child and others. Parents may choose to use a virtual program as part of their education plan, but this is very different from a virtual school. If anyone wants their child evaluated for services they would go through Child Find. Virtual School and/or On-line School. This is an on-line school where a child is receiving their instruction from a teacher on-line. These are programs like Louisiana Virtual Charter Academy, K-12 Online School, and University View Academy. Even though this is happening in the parent home, this is not home-schooling. Schools are still required to provide evaluations, IEP's, and accommodations and modifications as needed. Hospital/Homebound Services. This is when an IEP team makes the decision for the child to receive their educational services in their home or hospital setting. This is usually 2 to 4 hours a WEEK of instruction. Even though this is happening in the parents home, this is not home-schooling. 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 or on Facebook @fingertipsblog. Though I enjoy writing educational articles for parents, every now and then I get inspired to write about something in the world of OT and therapy that moves me. This month, I’d like to share a story about my patient that we’ll call Jane, and the interaction between us that has rejuvenated my practice. Jane is a very intelligent little girl with autism. She loves princesses, math, and space. She is also a perfectionist who enjoys things to be structured and organized. For example, she enjoys when toys are arranged the same way as pictured on the box. This need for order can lead Jane to get suddenly very upset when something is not the way that she needs it to be. So, if a piece is missing from the box in the previous example, or if she doesn’t have the fine motor skill to arrange it according to the picture, it can be hard for her to handle. We have been working on her ability to communicate in these times so that the adults around can understand her and help her where we can. On one occasion, Jane was painting an art project and was very worried about using her non dominant hand to stabilize her paper because she did not want to get it messy. The anxiety surrounding the possibility of paint touching her hand was preventing her from completing the art project the way she wanted to, and she began crying from frustration. Because we’ve been working on it, she said “Miss Rebecca, help me, please help me.” I prompted her, “help you with what?” not because I didn’t know what she was struggling with, but because I wanted to know how she wanted me to help her through it. I expected her to say “help me paint it” or “help me hold the paper.” Instead, she responded “Help me with ME!” Now, this took me aback. “Help me with me.” The awareness in that statement. How hard must it be to have that amount of stress in your toddler body? To be born with sensory difficulties that make it hard to touch paint, even though you love art; to look at new food, even though you enjoy eating; to wear socks with seams, even though you love the characters on them. It’s almost unfair. Of course, there are a million positive and wonderful qualities that also come with a unique sensory profile. But still, sometimes, it must be so hard to not be at peace in your own body. It’s something we all completely take for granted. And to hear Jane say “help me with me” reminded me that our children are often very aware of their difficulties and are seeking support and love through it. There is significant importance in communicating to Jane and others in her position, “yes, I will help you with you, we are working together to make this easier for you.” They deserve for it to be easier. They deserve acknowledgement of their struggle, and encouragement that it will get better. Our children with sensory deficits are working against their own body and are certainly braver and harder working than I am on a daily basis. It is my job to help them with them; to assist each child in becoming the best version of themselves. As a professional, I needed that reminder and I thank Jane for giving it to me. Every Tuesday FHF of GNO is open until 8:00 pm to talk or meet with parents. If you would like to meet with an information & training specialist, please call and make an appointment. 504-888-9111 An OT’s Reflection All these are questions and comments I get from parents and professionals alike when I bring up the Medicaid Waiver Program. Most have never heard of it, and nobody can really define it. And those who do know about it are under the impression that it is only for those who either already have Medicaid or fall below the poverty level with income. That elusive and oft misunderstood “waiver” is actually the Medicaid Home and Community Based Waiver Program, and it can be a vital piece in the puzzle known as raising a child with a developmental disability. When my son was a tot and the case worker talked to me about all the services for which he qualified, I shook my head at this one. She explained that it would provide help in the home as well as assist with home modifications. At the time I was a single mom and we lived in an apartment. He was a medical nightmare but as a result received quite a bit of home health nursing care while I worked, so I didn’t think I needed it. Fast forward ten years: Ernie had his trach removed (YAY!) and lost nursing care because he no longer qualified (uh-oh…). He was much healthier but I still needed supports for after school and other times. And it wasn’t like I could just hire a 15-year-old babysitter to take care of him. Not this guy! Fast forward another eight years or so: Ernie is finishing high school! He will need supervision and around-the-clock care still, and the waiver program (he has the NOW) gives us options for how he will spend his days. It will pay for helpers (aka “Direct Service Providers”) to be with him while my husband and I work, if that’s our choice. It will also cover job support if he goes to work, prevocational services, community integration and development, center-based respite, day habilitation, and other services. In short, it’s sort of a game-changer for us, allowing us to continue to work and provide for our family knowing that he will be safe and his daily needs met, and that his quality of life will be preserved. Currently there are four basic types of waivers: Children’s Choice, New Opportunities Waiver (NOW), Residential Options Waiver (ROW), and the Supports Waiver. There is talk of combining the programs to create one waiver where the client chooses the services they need, but for now each program offers slightly different services and are chosen depending on the specific needs of the individual being served. According to the Louisiana Department of Health website, the Children’s Choice Waiver offers supports to children through age 20 who live at home with their family or with a foster family. Services provided by Children’s Choice include support coordination, family support, center-based respite care, family training, environmental accessibility adaptations, and specialized medical equipment and supplies. Specialized therapies, such as aquatic therapy, art and music therapies, hippotherapy (therapeutic horseback riding) and sensory integration may also be provided through Children’s Choice. The New Opportunities Waiver, or NOW, offers home and community-based care to people 3 years and older with developmental disabilities who may otherwise require the care provided by an intermediate care facility. The NOW is intended to provide specific, activity-focused services rather than custodial care, and it is aimed at assisting people to live as independently as possible. The list of requirements for eligibility can be found on the Louisiana Department of Health website as well. The Residential Options Waiver (ROW) is designed to assist adults living in institutions to transition to living independently in their own apartment or home. It is not intended to provide 24 hours a day of one-on-one support, but it can be combined with other services such as day habilitation or supported employment to ensure as much independence as the individual desires. Supports Waiver participants, in addition to receiving support coordination and all medically necessary Medicaid benefits, have access to supported employment, prevocational training, day habilitation, and habilitation services. This waiver provides a minimal amount of assistance outside of daytime supports and is sometimes used emergently for individuals who have not accessed waiver services prior to exiting high school. Support Coordination is provided through each of the waiver programs, as well as Medicaid benefits. To apply for any of the Medicaid Home and Community Based Waiver programs, contact the human services district or authority in your parish. The process for applying for waiver services has changed in recent years. The new plan, or Tiered Waiver, means that individuals with a greater urgency of need will now be prioritized for receiving the most appropriate home and community-based services. A screening administered by the human services district case manager considers what services and supports are already in place, whether or not the person is eligible for Medicaid, the severity or complexity of the person’s disabilities, what additional supports may be needed and any changes in an individual’s life or living situation. Each case is given a Screening for Urgency of Need (SUN) Score to determine the urgency of need for waiver services. There are five levels of need, or tiers: 4--Emergent: Supports will be needed in the next 90 days. 3--Urgent: Supports will be needed in the next 3-12 months. 2--Critical: Supports will be needed in the next 1-2 years. 1--Planning: Supports will be needed in the next 3-5 years. 0--Currently no unmet needs. It is important to note that the SUN assessment can be repeated at any time the individual’s or family’s living situation or needs change. Simply call your case manager at your local human services district/authority and request a new SUN assessment. Back in the day, my son waited for over 8 years to receive waiver services. Hopefully, with the new Tiered Waiver system, the days of the long waiting lists are permanently behind us. For more information on the Medicaid Home and Community Based Waiver program, visit the Louisiana Department of Health website or contact your local Families Helping Families center. “What the heck is a waiver?” by Sharon Blackmon “Does that mean they have to waive their rights?” “We don’t need that. My child is in school all day.” “We probably make too much money to qualify.” The research is pretty convincing. Family caregivers are less likely than non-caregivers to practice preventive healthcare and self-care. Regardless of gender, age, race and ethnicity caregivers struggle to attend to their own well-being while managing caregiving responsibilities. They report sleep deprivation, poor eating habits, failure to exercise, failure to stay in bed when they are sick, and postponement of or failure to make medical appointments for themselves. Family caregivers are also at increased risk for depression and excessive use of alcohol, tobacco, and other drugs. PERSPECTIVES The Voices of Experience The Utah Parent Center produced this 30-minute video featuring experienced moms of adults with disabilities. They explore three questions: What are the biggest differences between having a child with a disability and having an adult with a disability? How did you successfully navigate your child's transition to adulthood? What are the most helpful tips you would give parents of individuals with disabilities? A Single Dad’s Perspective Matt, a single dad, shares his journey and the resources that are helping him parent his daughter with disabilities as she transitions from school to adult life. Matt's story. A CLOSER LOOK SELF-CARE Caregiving for a teen or adult with disabilities can be an emotional roller coaster. Sometimes, the idea of “self-care” can feel like a bad joke. Self-care is simply the practice of caring for yourself. It means protecting and safeguarding your own well-being, including your physical, mental, and emotional health. The only person who has the authority to decide what self-care means for you is YOU! What is YOUR Self-Care Action Plan? We like this fun video from "How to Adult." They remind us that "self-care is an attitude that says 'I am my own responsibility and I will honor that responsibility as I would anything else that is precious to me.' " They suggest having an action plan ready to go. Caregiver Bill of Rights “I have the right. . . to take care of myself. This is not an act of selfishness. It will give me the capacity to take better care of my relative.” The Caregiver Bill of Rights reminds caregivers that they must seek help and take care of themselves. Myths About Self-Care, Debunked Myth #1: “Self-care means going to great lengths to maintain my physical appearance.” While you certainly can go to great lengths to keep your hair, nails, and skin looking perfect, that is not necessarily self-care. If getting your nails done is relaxing and makes you feel good, that could qualify as self-care, but the moment you start to feel pressured (pressured to find time for that appointment, pressured to go when you don’t feel like it, etc.), it stops being self-care and starts being just another point of stress in your life. Myth #2: “Self-care means ‘treating myself,’ so I should eat whatever I want and do whatever I want.” One of the trickiest things about caring for someone is learning when to say “no.” For example, even if your dog really wants the chocolate you were eating, you still wouldn’t give it to him because you know chocolate isn’t good for him! The same idea applies to self-care—it’s about doing what’s best for you, and not just acting on your own whims. Sometimes, self-care means going to bed or getting yourself to work on time. Simple Ways to Practice Self-Care Treat Yourself Like Someone You Love - Take notice of the way you treat the people you love. Notice when you support them, show concern for them, and offer to help them. And then take all those caring gestures and offer them to yourself too! Treating yourself with love and respect is the foundation of self-care. Improve Your Self-Talk - Self-talk is an area where we tend to be harsher on ourselves than on other people. The next time you catch yourself making judgments about yourself, stop and ask, “Would I ever say that to my best friend?” If you don’t know where to start with improving your self-talk, try repeating one of these positive affirmations to yourself when you are feeling discouraged or down: “I am strong and capable.” “My hard work will pay off.” “I appreciate challenges and what I learn from overcoming them.” “A” is for Ambivalence This honest, to-the-point A-B-C approach looks at the emotional side of caregiving. Writer Donna Schempp, LCSW, does not sugarcoat anything. Many feelings come up when you are caring for someone day in and day out. After a while, the “negative” emotions that we tend to want to bury or pretend we aren’t feeling come up. Caregivers are often reluctant to express these negative feelings for fear they will be judged by others (or judge themselves) or don’t want to burden others with their problems. Schempp reminds that emotions we try to ignore can be like a two-year-old who wants your attention: they will keep tugging at you until you stop and acknowledge them. They can show up as poor sleep, illness, trouble coping, depression, stress eating, and substance abuse. This article will identify some of the common, often hard to admit, feelings that caregivers experience and offer suggestions for how to better cope with these feelings. Let’s start with “ambivalence…” Full article. TOOLS THAT WORK How Can You Trust a Caregiver? Trusting your child to the care of someone other than a family member is a big step. It can be a leap of faith. How do you get to the point of trusting them to do all the things they’re supposed to, especially when you’re not there? Michael George is the co-founder of SoaringFamilies.com, an online community focused on providing families with caregiving expertise and coping solutions. His post on TheMighty.com addresses this question. MAKING YOUR POINT Asking for and Accepting Help Being able to communicate constructively is one of a caregiverʼs most important tools. When you communicate in ways that are clear, assertive, and constructive, you will be heard and get the help and support you need. When people have asked if they can be of help to you, how often have you replied, “Thank you, but I'm fine.” Many caregivers donʼt know how to marshal the goodwill of others and are reluctant to ask for help. You may not wish to “burden” others or admit that you can't handle everything yourself. Be prepared with a mental list of ways that others could help you. For example, someone could take the person you care for on a 15-minute walk a couple of times a week. Your neighbor could pick up a few things for you at the grocery store. A relative could fill out some insurance papers. When you break down the jobs into very simple tasks, it is easier for people to help. And they do want to help. It is up to you to tell them how. Help can come from community resources, family, friends, and professionals. Ask them. Donʼt wait until you are overwhelmed and exhausted or your health fails. Reaching out for help when you need it is a sign of personal strength. How to Ask for Help Consider the personʼs special abilities and interests. If you know a friend enjoys cooking but dislikes driving, your chances of getting help improve if you ask for help with meal preparation. Resist asking the same person repeatedly. Do you keep asking the same person because she has trouble saying no? Pick the best time to make a request. Timing is important. A person who is tired and stressed might not be available to help out. Wait for a better time. Prepare a list of things that need doing. The list might include errands, yard work, or a visit with your loved one. Let the “helper” choose what she would like to do. Be prepared for hesitance or refusal. It can be upsetting for the caregiver when a person is unable or unwilling to help. But in the long run, it would do more harm to the relationship if the person helps only because he doesnʼt want to upset you. To the person who seems hesitant, simply say, “Why donʼt you think about it.” Try not to take it personally when a request is turned down. The person is turning down the task, not you. Try not to let a refusal prevent you from asking for help again. The person who refused today may be happy to help at another time. Avoid weakening your request. “Itʼs only a thought, but would you consider staying with David while I went to church?” This request sounds like itʼs not very important to you. Use “I” statements to make specific requests: “I would like to go to church on Sunday. Would you stay with David from 9 a.m. until noon?” RESOURCE Family Caregiver Alliance has this searchable state-by-state resource for help for family caregivers. CAREGIVERS “In the event of an emergency, an oxygen mask will be released from the compartment above you. Place the mask over your own mouth and nose before helping others.” ~ Airline safety information card The National Resources for Advocacy, Independence, Self-determination and Employment (RAISE) Technical Assistance Center works with the seven (7) Rehabilitation Service Administration (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. 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. National RAISE Center@SPAN, (December 10, 2019). The STANDARD: 5.9, Dec 2019. © 2018 RAISE Center. Source: US Department of Health and Human Services; National Heart Blodd Institiute; Everyday Physical Activitity Tips adapted from smallstep.gov Kids need at least 60 minutes of physical activity on most if not all days of the week. Tips to Reduce Screen Time Talk to Your Family Explain to your kids that it's important to sit less and move more in order to stay at a healthy weight. Tell them they’ll also have more energy, and it will help them develop and/or perfect new skills, such as riding a bike or shooting hoops, that could lead to more fun with friends. Tell them you’ll do the same. Set a Good Example You need to be a good role model and limit your screen time to no more than two hours per day, too. If your kids see you following your own rules, then they’ll be more likely to do the same. Log Screen Time vs. Active Time Start tracking how much time your family spends in front of a screen, including things like TV- and DVD-watching, playing video games, and using the computer for something other than school or work. Then take a look at how much physical activity they get. That way you’ll get a sense of what changes need to be made. Use the Screen Time Chart (141 KB) to do it. Make Screen Time = Active Time When you do spend time in front of the screen, do something active. Stretch, do yoga and/or lift weights. Or, challenge the family to see who can do the most push-ups, jumping jacks, or leg lifts during TV commercial breaks. Set Screen Time Limits Create a house rule that limits screen time to two hours every day. More importantly, enforce the rule. Create Screen-free Bedrooms Don’t put a TV or computer in your child's bedroom. Kids who have TVs in their room tend to watch about 1.5 hours more TV a day than those that don’t. Plus, it keeps them in their room instead of spending time with the rest of the family. Make Meal Time = Family Time Turn off the TV during meals. Better yet, remove the TV from the eating area if you have one there. Family meals are a good time to talk to each other. Research shows that families who eat together tend to eat more nutritious meals. Make eating together a priority and schedule family meals at least two to three times a week. Provide Other Options Watching TV can become a habit, making it easy to forget what else is out there. Give your kids ideas and/or alternatives, such as playing outside, getting a new hobby, or learning a sport. Everyday Physical Activity Tips Small steps that get your family to move more can help all of you maintain a healthy weight. Choose a different tip each week for you and your family to try. See if you or they can add to the list. Here are a few: Walk Whenever Possible Walk instead of drive, whenever you can Walk your children to school Take the stairs instead of the escalator or elevator Take a family walk after dinner Replace a Sunday drive with a Sunday walk Go for a half-hour walk instead of watching TV Get off the bus a stop early, and walk Park farther from the store and walk Make a Saturday morning walk a family habit Walk briskly in the mall Take the dog on longer walks Go up hills instead of around them Move More in Your Home Garden, or make home repairs Do yard work. Get your children to help rake, weed, or plant Work around the house. Ask your children to help with active chores Wash the car by hand Use a broom instead of a blower Live Actively Join an exercise group, and enroll your children in community sports teams or lessons Do sit-ups in front of the TV. Have a sit-up competition with your kids Pace the sidelines at kids' athletic games Choose an activity that fits into your daily life/lives Use an exercise video if the weather is bad Avoid labor-saving devices, such as a remote control or electric mixers Play with your kids at least 30 minutes a day Dance to music… with your kids Choose activities you enjoy. Ask children what activities they want to do Explore new physical activities Give yourself a gold star with non-food related rewards, such as a family day at the park, lake, or zoo Swim with your kids Buy a set of hand weights and play a round of Simon Says with your kids—you do it with the weights, they do it without Don't Use TV Time as Reward or Punishment Practices like this make TV seem even more important to children. Understand TV Ads & Placements Seeing snack foods, candy, soda, and fast food on television affects all of us, especially kids. Help your child understand that because it’s on TV—or your favorite TV characters/actors eat or drink it—doesn’t mean a food or drink is good for you. Get your kids to think about why their favorite cartoon character is trying to get them to eat a certain brand of breakfast cereal. Related Resources Reduce Screen Time Tools and Resources Information and materials to help families and communities reduce screen time. Healthy Adventure Infographic (572 KB PDF) Tips on ways you and your family can get healthy together. The Story of Data: An Early Childhood Tale is an engaging animated story that shows how data inform early intervention decisions for a baby with disabilities. The video also illustrates how secure data are combined at the local, state, and national levels to help leaders make informed decisions that support the needs of children with disabilities and their families. The Story of Data: A Special Education Tale La historia de los datos: Un cuento de la educación inicial es una historia animada atractiva que muestra cómo los datos informan las decisiones de intervención temprana para un bebé con discapacidades. El video también ilustra cómo se combinan datos seguros a nivel local, estatal y nacional para ayudar a los líderes a tomar decisiones informadas que apoyen las necesidades de los niños con discapacidades y sus familias. La historia de datos: Un cuento sobre los datos de educación especial The Story of Data: An Early Childhood Tale The Story of Data: A Special Education Tale animation shows how confidential data for a kindergarten student provide important information about her unique needs. Like the Early Childhood Tale, this video also shows how stakeholders at the local, state, and national levels pool secure IDEA data are pooled to help leaders and others make relevant program and policy decisions. La historia de datos: Un cuento sobre la educación inicial La Historia de Datos: Un cuento sobre los datos de educación especial, es una animación que muestra como los datos confidenciales de un estudiante de kindergarten proporcionan información importante sobre sus necesidades únicas. Al igual que el cuento de la Educación inicial, esta animación también muestra como los datos seguros de IDEA se juntan para ayudar a los líderes a crear programas relevantes y hacer decisiones políticas. Free WEBINARS What's Going On? Educational Plans: IEP’s vs. 504 Plan - Students with disabilities will usually qualify for either an IEP or a 504 Plan – but what is the difference and is one better than the other? This training will take you through the eligibility process of both plans, the laws that regulate both, the differences in the plans and parental rights. Co-Sponsor: Northshore FHF Date: Thursday, January 9, 2020 Time: 10:00 am – 11:00 am 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 is it included in IEP? Which accommodations are provided for state testing? Co-Sponsor: FHF of Greater Baton Rouge Date: Thursday, January 9, 2020 Time: 11:30 am – 12:30 pm Audience: Parents, Caregivers, & 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 of Southwest Louisiana Date: Monday, January 13, 2020 Time: 11:00 am – 12:00 pm Audience: Parents, Caregivers, & Professionals of School-Aged Children/Students. Introduction to Special Education - Do you suspect your child could benefit from special education and related services? Or, Is your child newly evaluated? If so, this training is perfect for you. This intro to special education will give you a strong foundation to build future knowledge. You will learn the very basics through the philosophy of special education, the laws, evaluation process, and ultimately an IEP. Co-Sponsor: FHF of Northeast Louisiana Date: Thursday, January 16, 2020 Time: 11:00 am – 12:00 pm Audience: Parents, Caregivers, & Professionals of School-Aged Children/Students. Importance of Inclusion - Why is inclusion of children with disabilities in schools, classrooms, and communities important? This webinar answers that question. It explores what inclusion is and is not, who are involved in making meaningful inclusion successful, and its underpinnings in federal law. Co-Sponsor: FHF NOLA Date: Thursday, January 16, 2020 Time: 12:30 pm – 1:30 pm Audience: Parents, Caregivers, & Professionals of School-Aged Children/Students. All About Test and Assessments - This webinar will talk All About Assessments and Testing. It will answer some frequently asked question regarding assessments and testing, when to have your child evaluated and interpreting those assessment results. Co-Sponsor: FHF of Acadiana Date: Tuesday, January 21, 2020 Time: 12:00 pm – 1:00 pm Audience: Parents, Caregivers, & Professionals of School-Aged Children/Students. Anatomy of the 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 Northeast Louisiana Date: Thursday, January 23, 2020 Time: 10:00 am – 11:00 am 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 at the Crossroads Date: Thursday, January 23, 2020 Time: 7:00 pm – 8:00 pm Audience: Parents, Caregivers, & Professionals of School-Aged Children/Students. Mapping Dreams (Transition to Adulthood) - The transition your child will make from being a child to becoming an adult member of the community is an important journey, and one that requires a plan. It's important to begin thinking about your child’s transition to adult life as early as possible. Your child will need to make many significant decisions during this journey to adult life. In this presentation, we will explore what families and youth can do to help plan for the student’s transition from high school to adult employment, postsecondary education or training, and independent living. Co-Sponsor: Bayou Land FHF Date: Saturday, January 25, 2020 Time: 10:00 am – 11:00 am Audience: Parents, Caregivers, & Professionals of School-Aged Children/Students. 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: FHF of Southwest Louisiana Date: Monday, January 27, 2020 Time: 9:00 pm – 10:00 pm Audience: Parents, Caregivers, & Professionals of School-Aged Children/Students. JANUARY 2020 A state complaint is very much what it sounds like: a letter written to a official state agency to report a violation or problem. Within special education, it’s one of several procedural safeguards available under IDEA to resolve disputes between parents of children with disabilities and the school systems responsible for educating those children. To whom does a person write? Why would a person write? What must he or she include in the complaint? What happens then? The answers to these questions are the heart and soul of the state complaint procedure–and they are largely determined by the requirements of IDEA. States must follow IDEA’s regulations when they develop and implement the state complaint procedures in the state. While many details exist in the process and are important to know, a quick summary of the state complaint requirements as a dispute resolution option would include these major points: Any individual or organization may file a complaint alleging that the State or other participating agency has violated a requirement of the IDEA. An individual wishing to file a complaint must provide a copy of the complaint to the school district or public agency serving the child at the same time the complaint is filed with the State Educational Agency (SEA). In some states, the SEA provides for the filing of a complaint with a public agency and retains the right to have the SEA review the public agency’s decision on the complaint. Complaints must be written and signed and must contain a statement that a public agency has violated a requirement of Part B of IDEA or its implementing regulations and the facts upon which the statement is based. The complaint must allege a violation that occurred not more than one year prior to the date that the complaint is received. The SEA is obligated to resolve such a complaint within 60 calendar days from the date of receipt, unless exceptional circumstances exist with respect to the complaint. The complainant (the individual or organization filing the complaint) must be given the opportunity to submit additional information, either orally or in writing, about the allegations in the complaint. The SEA must conduct an on-site investigation, if it determines such an investigation to be necessary. The SEA must review all relevant information and make an independent determination as to whether the school system has violated or is violating a requirement of the law. The SEA must then issue a written decision that addresses each of the allegations in the complaint and contains the findings of fact and conclusions, as well as the reasons for the SEA’s final decision. Your State’s Complaint Procedures As was mentioned above, working from IDEA’s requirements, states develop and implement their own state complaint procedures (which still must address the IDEA requirements at 34 CFR §§300.151-153). Therefore, it’s helpful to know what state complaint procedures exist in your state. IDEA requirements below. 300.151 300.152 300.153 Louisiana Procedures The special education dispute resolution system at the Louisiana Department of Education (LDE) is committed to assisting schools and parents in their efforts to resolve disagreements in the least adversarial manner possible. Therefore, they encourage parents or other concerned individuals to first contact their school district’s director or supervisor of special education before utilizing the state-level dispute resolution processes. What we like to call the chain of command. The LDE has developed several processes for resolving disagreements about the provision of a free appropriate public education, payment for services obtained, or a child's eligibility, evaluation, level of services, or placement. Forms for requesting any of the processes linked below can be found on the LDE’s on-line document library. Due Process Hearing Request Form Formal Complaint Request Form IEP Facilitation Request Form Mediation Request Form Louisiana Student Standards Have you ever wondered what your child is supposed to be learning in school? Academic Standards define the knowledge and skills that students are expected to learn in a subject in each grade level. Louisiana’s Department of Education has a comprehensive list of all academic standards on their website. All students, even students receiving special education are supposed to be working on these standards. State complaints are an important procedural safeguard in IDEA, because they give individuals and organizations a mechanism through which they can address special education conflicts and resolve disputes. The complaint resolution process tends to be less intimidating than a due process hearing and is an alternative to it. Interestingly, the IDEA statute does not include State complaint procedures. Rather, it is the final Part B regulations that require each state to adopt written procedures for resolving any complaint that meets the definition of a “State complaint” under the Part B regulations. The requirements for State complaint procedures are found in the regulations at §§300.151-300.153. The State Complaint Process, Summarized homeworkla.org/ Dr. Josie Badger Working with Dolphins: A (W)Holistic Path to Career Discovery As a child I remember playing make-believe, pretending that I was a teacher, a doctor, a veterinarian, a marine biologist, a secretary. I would imagine what it would be like as an adult in one of these careers. I imagined myself swimming with the dolphins with a whistle, teaching them how to jump and spin, but my wheelchair and ventilator didn’t appear in those dreams. That desire to be a marine biologist followed me through junior high, eventually leading me to choose classes in the sciences with a plan to pursue veterinary medicine in high school. I was looking at my interest in working with animals but not at the bigger picture of who I was and other ways I could fulfill those dreams. Through a prolonged process of self-awareness and self-acceptance, I would finally realize that potentially swimming with the dolphins was not the ideal career for me, but I never gave up the passion for working with animals. However, I realized that I could fulfill that and other passions through other means. I needed to step back from my immediate situation and look at the bigger picture. Why did I want to be a marine biologist? It had nothing to do with swimming (frankly, I am terrified of water), and it had nothing to do with performing. It was about caring for and training animals. I then had to look at my entire self, including my disability (which was something I did not like to do at the time), and consider how it would play a role in my career. Due to my physical disability and extremely limited physical ability, I had to come to the realization that my body was probably not going to play a significant role in my job; rather, it was little more than the vessel for my mind and soul, so my career had to reflect that. Today, though I am not employed in working with animals, I am still able to do that in my personal life and volunteering. For me, that passion did not disappear and I did not abandon it. I found my calling and career when I was able to pull together my passion for helping, my experiences, my strengths that have come with my disability, and the barriers I have faced due to my disability. I remember a story from one of my previous coworkers, who was the mother of a young man with Down syndrome. Growing up, he repeatedly told others that he wanted to be a doctor. Many parents would have dismissed this interest, seeing the goal as nearly unobtainable and forcing him to find a more “realistic” goals. His mother, however, recognized the importance of passion and how it can be used to fuel a successful career. As the family started to prepare for transition, his mother decided to further pursue understanding why her son wanted to be a doctor. He replied, “Because I want to help people.” He knew that he was passionate about helping people, and he knew that’s what doctors did, but he did not see the multiple avenues that he could take to achieve this. His mother decided to introduce him to other careers where he could help others and use his strengths. For over 10 years now, he has been working at a grocery store and helps others every day. He is able to use his skills and passion to serve the community and live independently with his wife. In the sphere of employment, disability, and success, we all must consider our passions and our unique strengths and weaknesses, and determine how we can use these to serve and be employed. This can be done through a process of self-awareness, self-acceptance, and career exploration or discovery. There is no one way to fulfill our passions and childhood dreams. 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. National RAISE Center@SPAN, (September 10, 2019). Working with Dolphins: A (W)Holistic Path to Career Discovery, Newark, NJ, Dr. Josie Badger. © 2018 RAISE Center Growing up in a small, rural town on the Northshore I was a very shy child. I could be found hiding behind my mom’s legs anytime a new person approached me. I rarely opened up to anyone besides my family and friends and living a life that involved coming out of my shell frightened me to no end. The one thing that I wanted most in my life was to be a mom. I wanted lots of children and would spend hours daydreaming about motherhood. It was my destiny. In 2001, I was a freshman at Southeastern Louisiana University and had declared a major in Elementary Education. I enrolled in SPED 200 – an introduction to Special Education – and I was hooked. I knew I had to be a Special Education teacher and five long years later (after a marriage, birth of my first son Aaron, a divorce, and another marriage) I graduated with a degree in Regular and Special Education. Just before my graduation I had secured a job at my hometown high school teaching the self-contained class, and I couldn’t wait to begin my journey there. The Christmas season of 2006 not only gifted me with my college graduation, but also the birth of my son, Connor. I had student taught while pregnant with him, had a completely normal pregnancy and delivery, but minutes after Connor’s birth something went awry. My precious boy was whisked away to the NICU, and there he stayed for three weeks. Connor overcame his persistent pulmonary hypertension and low body temperatures and came home a few days before Christmas. He was our perfect Christmas present. As much as I had hoped all was well with my boy, my gut feeling told me otherwise. Daily weight and bilirubin checks yielded bad news day after day. Connor was lethargic and severely jaundiced, and my gut instinct was validated when a nurse practitioner advised me to take him to Children’s Hospital in New Orleans. Two weeks later, after grueling tests on my tiny newborn child, we had an answer. Connor was diagnosed with a rare brain malformation called Schizencephaly, along with Panhypopituitarism, and Optic Nerve Hypoplasia. In laymen’s terms, Connor’s brain did not grow as it should have in utero thus causing damage to his entire brain, pituitary gland, and optic nerves. We were told he’d be developmentally delayed, have seizures, medically fragile and in need of hormone replacement medications, and blind. Weeks later we took home our precious boy, I turned down my recent job opportunity, and my husband left for the Louisiana State Police training academy in Baton Rouge for six months. Life after Connor’s birth and diagnosis is a blur, but there is one thing that I remember vividly. I remember grieving the child I thought I was “supposed” to have. I grieved for my child, for myself, my husband, my oldest son. I cried until I could not cry anymore. The day the grief left me was the day our new life started. This was also the day I found my voice, and little did I know then how this voice of mine would change our lives. Countless hospital stays, therapy sessions, and insurance denials were my first experience in advocacy. One of Connor’s Early Steps therapists coined me as a “momma bear” due to my relentlessly protective nature. If something wasn’t right, I was using my voice to fix it. I quickly learned that individuals with disabilities or complex health care needs had to navigate a system that was not user friendly, and completely exhausting from the amount of paperwork, phone calls, emails, and input we had to continuously provide for care and services. During Connor’s early years I would find myself arguing with an insurance company on yet another denial and I would laugh thinking of how that shy, timid girl from the small town wouldn’t recognize the person I was today. Life changes you, and you rise to meet the challenge. That was my mindset. Leave no stone unturned in helping my child reach his maximum potential for the life he deserved. Connor began his educational experience at Amite Elementary School in a typical Pre-K classroom with support. He loved nothing more than being with his peers, being included in daily activities and trips, and being surrounded by a team of professionals that all had the same end goal in mind. I was teaching in inclusion classrooms a few grades above Connor, and life was great. Or so we thought. Seizures. Tonic clonic, myoclonic, absence, atonic, and many other types of seizures took hostage of Connor’s brain with a vengeance. While he had battled seizures since he was 6 months old, he had never experienced a severity like this. By the time Connor was 6 he had tried over 25 anti-epileptic medications, surgeries, diets, and other avenues that had helped others, but nothing was helping my boy. In 2013 Connor went into status epilepticus and was placed in an induced coma. This episode that lasted nearly 24 hours took so much from Connor. It took his ability to chew, crawl, and his most recent skill – his ability to say momma. I was devastated, yet thankful he was still with me. I knew we had to try something else, but it seemed there was nothing left to try. A year later Connor’s doctor made a bold statement. She stated that Connor would likely benefit from the use of medical marijuana, but unfortunately it was not legal in Louisiana. And with that bold statement I found myself researching benefits from marijuana on children with seizure disorders for hours on end. This was the something I was looking for, but getting it passed through our very conservative legislature seemed nearly impossible. I was familiar with legislative advocacy thanks to LaCAN (LA Council’s Advocacy Network) and advocating for disability services. Having attended yellow shirt days, disability rallies, and contacting my legislators had prepared me for this next advocacy adventure, and I was ready to advocate like a mother. In the spring of 2016, Connor and I could have been found in the halls of the Louisiana State Capitol on any given day. I spent hours talking to legislators in person, on the phone, through emails all with the hope that I could educate them on the benefits of medical marijuana, how it could help my son and others like him, as well as end the stigma that so often goes with marijuana. I gave testimony in the Senate and House Health and Welfare committees and attended chamber votes. I was a visible reminder to legislators that Senate Bill 271 was for families like mine, and theirs. The day SB 271 passed in the House of Representatives chamber is one I will never forget. So many legislators were lobbying on our behalf and bringing legislators who were undecided to speak with me. Tears flowed down my cheeks as I hugged Connor’s neck hearing Speaker Barras pound his gavel with the passage of SB 271. Days later my family proudly stood behind Governor Edwards as he signed the bill into law. He exclaimed to me, “Advocacy does work, my friend! Great job.” The knowledge and relationships I gained from advocating for medical marijuana ultimately led me to questioning if the classroom was where I was meant to be. I wanted to help families in a different way that could help them navigate the complex disability service delivery system. In January of 2017 I began Partners in Policymaking ready to become a systems change agent and learn even more to help me become a stronger advocate. Two months later I was chosen as the Executive Director of Northshore Families Helping Families. The two years I had the honor of leading NFHF were nothing short of incredible. My staff and I created many new initiatives that better served our families in acquiring services, receiving education advocacy help, and finding much needed peer to peer support with other families in their communities. Leading this wonderful nonprofit was truly a labor of love and all consuming. I knew that my family life was suffering due to my extreme commitment to NFHF, and I would think back to how motherhood was looking much different than I envisioned it as a child. I longed for quality time with my husband and children, but at the same time felt an urge to help families touched by disability with every ounce of my being. Balancing life was becoming difficult, and I prayed for an answer. In February of 2019, my prayer was answered. With the encouragement from friends in Baton Rouge, I founded Katie Corkern Consulting, LLC. This new endeavor allowed me to use skills I had learned, relationships I had made, and the voice I had honed over the years to become a career that would allow a greater balance of family and work life, as well as create meaningful change for the underserved in Louisiana. Today life is slower paced, yet still full to the brim. I spend my days caring for my boys, attending meetings for work, collaborating with other disability advocates, and supporting families touched by disability through peer support. The fruits of my advocacy labor came to fruition in August 2019 when Connor finally received his medical marijuana oil. We have seen great results in not only seizure reduction but also more cognitive and physical awareness. Advocacy is exhausting and full of twists and turns, but it works and is worth t. When Connor was born, I never imagined that my profession would be anything other than a teacher, but life has a way of turning your plans upside down all so that you can achieve what you were destined to become, if only you allow it. | SMALL TOWN NO MORE: Mama Bear is in the house! by Katie Corkern Katie testifying before Health & Welfare re: SB271 Katie with her cousin Jennifer Morgan, mother Maria Ordoyne, and son Connor Representative Helena Moreno, Katie, Senator Fred Mills, and Connor Governor John Bel Edwards, Coye, Aaron, Katie, Connor and Cooper Corkern Senator Gerald Boudreaux and Connor Corkern Social Security Updates SOCIAL SECURITY BENEFITS INCREASE IN 2020 Each year, we announce the annual cost-of-living adjustment (COLA). By law, federal benefits increase when the cost of living rises, as measured by the Department of Labor’s Consumer Price Index for Urban Wage Earners and Clerical Workers (CPI-W). Usually, there is an increase in the benefit amount people will receive each month, starting the following January. Nearly 69 million Americans will see a 1.6 percent increase in their Social Security benefits and SSI payments in 2020. Other changes that will happen in January 2020 reflect the increase in the national average wage index. For example, the maximum amount of earnings subject to Social Security payroll tax will increase to $137,700 from $132,900. The earnings limit for workers who are younger than "full" retirement age (age 66 for people born in 1943 through 1954) will increase to $18,240. (We deduct $1 from benefits for each $2 earned over $18,240.) The earnings limit for people turning 66 in 2020 will increase to $48,600. (We deduct $1 from benefits for each $3 earned over $48,600 until the month the worker turns age 66.) In December 2019, we will post Social Security COLA notices online for retirement, survivors, and disability beneficiaries who have a my Social Security account. You will be able to view and save future COLA notices via the Message Center inside my Social Security. You can log in to or sign up for a my Social Security account to get more information about your new benefit amount. You can choose to receive an electronic notification by email, text, or both ways under “Message Center Preferences.” Our notification will let you know that a new message is waiting for you. We will not send any personal information in the notification. The Message Center also allows you to go paperless by opting out of receiving agency notices by mail that you can get online, including annual cost-of-living adjustments and the income-related monthly adjustment amount increases. The Message Center is a secure portal where you can conveniently receive sensitive communications that we don’t send through email or text. More information about the 2020 COLA is available at www.socialsecurity.gov/cola. TOP TEN SITES OF SOCIAL SECURITY FOR 2019 We provide our online services to improve our service to you. Here are our top 10 websites of 2019: Open your own personal my Social Security account, which will enable you to verify your earnings, get future benefit estimates, obtain benefit verification letters, update your Social Security information if you receive benefits, and more at my Social Security account. We’ve recently added some new features to make doing business with us easier than ever. Need answers to your Social Security related questions? Our Frequently Asked Questions page is the authoritative source. Our hub for Social Security news and updates is our blog: Social Security Matters. You can use social media to easily share these informative articles with friends and family. Knowing how much money you may get in the future can help you plan your finances. Get instant, personalized estimates of your future Social Security benefits In many states and the District of Columbia, you can request a replacement Social Security Card online here. You can complete and submit our online application for retirement benefits it in as little as 15 minutes here. You can conveniently apply for disability benefits here. Access our publication library — we have online booklets and pamphlets (including audio versions) on key subjects here. Our new Instagram account is a modern way to get Social Security news. We engage thousands of customers on our Facebook page where you can join the conversation (and follow us). We are working to give you easy access to the information you need from us. Stay in touch and please feel free to share these pages with your friends and family. The aged and people with disabilities may need extra assistance to manage their finances. If you have a loved one who needs your help, you may be able to become a representative payee. A representative payee receives the beneficiary’s payments and is given the authority to manage them on the beneficiary’s behalf. We recognize that turning someone’s finances over to someone else is a big deal so we make sure that the beneficiary needs the help and that you are the best person to offer that help. We may also monitor that you spend the benefits appropriately on behalf of the beneficiary. If we choose you to serve as a representative payee, that appointment is only to manage Social Security and SSI funds, not to manage non-Social Security money or medical matters. As a representative payee, you must know what the beneficiary’s needs are so you can decide the best use of benefits for their care and well-being. Each year, Social Security may ask you to complete an annual Representative Payee Report to account for the benefits you’ve received and spent on their behalf. You can either fill out the form and return it to Social Security or go online to file a report. Due to a recent change in the law, we no longer require the following payees to complete the annual report: Natural or adoptive parents of a minor child beneficiary who primarily reside in the same household as the child Legal guardians of a minor child beneficiary who primarily reside in the same household as the child Natural or adoptive parents of a disabled adult beneficiary who primarily reside in the same household with the beneficiary Spouse of a beneficiary We’ve also made it easier for caregivers who are representative payees to do business with us. If you’re a representative payee, check out our new Representative Payee Portal which lets representative payees conduct their own business or manage direct deposits, wage reporting, and annual rporting for their beneficiaries. You can read more about becoming a respresentative payee here. By Ray Vigil Social Security Public Affairs Specialist in El Paso, Texas HELP A LOVED ONE WITH SOCIAL SECURITY What is a “Hater?” “Hater” is a label used to refer to people who use negative and critical comments and behavior to bring another person down by making them look or feel bad. These hurtful and negative comments can be delivered in person, online, or in texts and apps. Often, the comments and behavior are repeated over time. Haters are often anonymous (especially online) but they can also be acquaintances, peers, or people who were once considered friends. Hateful, critical behavior is another form of bullying or cyberbullying. Like bullying, hater behavior is something that a person does – it is not who they are, and it can be changed. Often, haters pick on people whom they perceive as being different from themselves. Being the focus of negative and critical comments can be upsetting and trigger feelings of anger, hurt, and confusion, and cause the person being criticized to question their self-worth and behavior. If the negative comments are posted online, it can also make someone afraid to use their social media accounts or feel ashamed of what is happening there. Many children and teens don’t want to be a part of negative behavior like name calling, criticizing, bullying, and cyberbullying. Dealing with haters isn’t that different from dealing with bullying and cyberbullying. Teens who feel overwhelmed by all the drama on social media will often unfriend or unfollow people online to disengage. How to Deal with Haters Ignore it. Walk away. Don’t react or respond to negative comments. If it continues, there are other things you can do. If someone threatens you, report it to a parent, teacher, or other trusted adult. Block online haters. If someone is making negative or hateful comments on your posts or account, or is cyberbullying, block them. If they’re threatening you, tell your parents, report it to the platform, and take screenshots. How to report things on Facebook How to report a post on Instagram How to report abusive behavior on Twitter How to report offensive content on Tumblr How to report abuse on Snapchat Be kind and respectful, even to haters. It shows that you’re in control of your emotions and that you aren’t letting negativity bring you down. Stick with supporters. Having a friend nearby if you think you might encounter a hater not only makes it less likely that an incident might happen, but also means you’ll have positive reinforcements just in case. Remind yourself that comments from a hater are a reflection of them and aren’t really about you. People who feel good about themselves don’t need to put others down. Understand criticism can be a sign of pain. People sometimes lash out because they have other life struggles. Negative comments may have nothing to do with you. Acknowledge your feelings. Talk to a trusted adult or friend and get some encouragement and support. Keep being you. Keep moving forward, pursuing your interests, and being who you are. Programs and Services: Children with disabilities may attend publicly funded programs such as Head Start, State Pre-K, Title I, or other inclusive program at no cost to families. If a child attends a publicly funded preschool program, the child’s placement is funded through that entity. Special education and related services are provided through the school system. In addition, Special education funds may be used to provide supports for the child and teachers, including training for those working with the child. If a child’s IEP team decides an inclusive setting is needed, and a public program is not available, the district is responsible for providing the inclusive setting. School districts should work with their community partners to create inclusive opportunities for young children with disabilities. For more information, visit the ECTA Center’s Inclusion page: https://ectacenter.org/topics/inclusion The ECTA Center is a program of the FPG Child Development Institute of the University of North Carolina at Chapel Hill, funded through cooperative agreement number H326P170001 from the Office of Special Education Programs, U.S. Department of Education. Opinions expressed herein do not necessarily represent the Department of Education's position or policy. Project Officer: Julia Martin Eile “All young children with disabilities should have access to inclusive high-quality early childhood programs, where they are provided with individualized and appropriate support in meeting high expectations.” ~U.S. Departments of Health and Human Services and Education, September 2015 https://www2.ed.gov/policy/speced/guid/earlylearning/joint-statement-full-text.pdf Inclusion of Children with Disabilities in Early Childhood Programs Equal Access: Young children with disabilities have equal access to early care and education programs, as detailed in the American with Disabilities Act (ADA) and Section 504 of the Rehabilitation Act. If a child is otherwise eligible to attend a public or private program, the child cannot be denied access based on disability and must be considered for enrollment in the same manner as their peers. Plan: Under the Individuals with Disabilities Education Act (IDEA), each preschool aged child with a disability has an Individualized Education Program (IEP) developed by a group of educators and the child’s parent. The team documents the child’s strengths and areas of need, develops yearly goals and plans services that will enable the child to reach their goals. The final step in developing the plan is for the team to determine the type of placement where the child will receive their services. The first consideration is discussion of the supplementary aids, and special education and related services the child would need to be successful in a regular early childhood setting. How to Deal with “Haters” Settings: Settings might include programs such as Head Start, State Pre-K, preschool, Title I,Kindergarten, or child care. Consideration should be given to an early childhood program the child is attending. If the plan can be delivered in that setting, it would allow the child to remain with his peers and avoid unnecessary transitions. Only when a child's educational needs cannot be met in an early childhood program should other placement options be considered. stopbullying.gov - A federal government website managed by the U.S. Department of Health and Human Services, 200 Independence Avenue, S.W. Washington, D.C. 20201 “Thank You Omu!” by Oge Mora (PK-Grade 2) “Stone Soup” by Marcia Brown (K-Grade 4) “The True Story of the 3 Little Pigs” by Jon Scieszka (rhymes with Fresca) (Grade 1 up) Resources to Support Everyday Reading - Cooking Up Understanding Three steps to build reading skills: Preview what will be in the text before you start reading together. Discuss what is happening in the text during reading. Summarize or tell what happened in the story after reading. Dyslexia and Phonological Processing Decoding Dyslexia Watch a webinar on dyslexia and phonological processing, presented by by Dr. Richard Wagner, and geared toward educational practitioners. APPS & ASSISTIVE TECHNOLOGY Meet Libby. Did you know your local library has thousands of ebooks and audiobooks? You can borrow them, instantly, for free, using just the device in your hand. App Store | Google Play | Microsoft Resources at Your Library Public libraries are a great resource for your child’s literacy learning. They often provide free literacy events, in addition to children’s audio and print books. Library staff can help find resources to support your child’s learning at home. Check your local library to see what it offers! RESOURCES for PARENTS & EDUCATORS Federal Guidance on Dyslexia from the Office of Special Education and Rehabilitative Services Office of Special Education and Rehabilitative Services Read a letter from OSEP describing the implications of federal law on disabilities for state policy and practice, especially concerning the identification and treatment of dyslexia. Cooking Up Understanding: Simple Interactions Can Build Reading Skills Cooking Up Understanding Can Your Kindergartner Research and Discuss a Topic? Great Schools This video shows the steps kindergartners take, beginning with listening to you read, as they learn to take simple notes. Talking with Your Struggling Reader Reading Rockets This tip sheet shares real children's struggles with reading and provides tips for supporting them. Comprehension www.readingrockets.org 5 Great Reasons to Cook with Your Kids www.healthychildren.org Supporting Your Child’s Literacy Development This toolkit helps parents and families take part in literacy experiences at home to develop children’s reading and language skills. Beginning Reader Issa’s Edible Adventures Is your little one an aspiring chef? Download Issa’s Edible Adventures today and explore the excitement of a working restaurant kitchen while learning about foods from around the world! (PK-Grade 1) WEBSITES BOOKS How do we prevent reading difficulties and failure? Children should be taught word identification, comprehension, and reading development. Retaining kids in hopes that "maturity" will cause them to learn to read, write and spell has been discredited for decades. You cannot always assume that special educators know how to teach children to read. Special education teachers may have graduated with an overview of reading but no real training in any research based reading program. In this issue of the Special Ed Advocate you'll find out the importance of implementing research based reading instruction. Learn about the most commonly used tests of reading - what they measure, how they are administered, and their limitations. Waiting to Fail? Is your child struggling to read, but falling further behind? Does your child have difficulties, with red flags especially in language areas - reading, spelling, writing? Did the school hesitate to evaluate him, while he continues to struggle with reading? Did the special ed program fail to remediate his reading problems? MINDFUL MINUTE Check Out Bookshare If you cannot read traditional print books due to a visual impairment, physical disability or dyslexia, Bookshare may be for you! Bookshare® is FREE for qualified U.S. students of any age. JANUARY awareness Birth Defects Awareness Month - Join the nationwide effort to raise awareness of birth defects, their causes, and their impact! Not all birth defects can be prevented. Cervical Health Awareness Month - The United States Congress designated January as Cervical Health Awareness Month. Nearly 13,000 women in the United States are diagnosed with cervical cancer each year, but the disease is preventable with vaccination and appropriate screening (Pap and HPV tests). Healthy Weight Awareness Month - get physical and physically activity as it’s proven to help with achieving and maintaining a healthy weight. National Blood Donor Month - declared by President Richard Nixon in 1970, to pay tribute to voluntary blood donors and increase donation by others. The acute need for blood was reflected earlier this month in the Red Cross's emergency call for donations. National Glaucoma Awareness Month - an important time to spread the word about this sight-stealing disease. Currently, more than 3 million people in the United States have glaucoma. National Mentoring Month - a campaign held each January to promote youth mentoring in the United States. It was inaugurated in 2002, and is spearheaded by the Harvard School of Public Health, MENTOR, and the Corporation for National and Community Service. National Radon Action Month - To protect the lives of all Americans, the U.S. Environmental Protection Agency (EPA) has designated January as National Radon Action Month. This is a great opportunity to increase awareness of radon, promote radon testing and mitigation, and advance the use of radon-resistant new construction practices. National Stalking Awareness Month - an annual call to action to recognize and respond to the serious crime of stalking. It is critical to raise the issue of stalking as its own form of gender-based violence as well as a crime that frequently predicts and co-occurs with physical and sexual violence. National Winter Sports Traumatic Brain Injury (TBI) Awareness Month - calls attention to the fact that although sports injuries contribute to fatalities infrequently, the leading cause of death from sports-related injuries is traumatic brain injury. Poverty in America Awareness Month - a time when individuals, charities, and large organizations can reexamine their commitment to helping those in need. There are roughly 40.6 million people living in poverty in the United States, and Native Americans tend to be over-represented within this population. Thyroid Awareness Month - Up to 20 million Americans have a thyroid condition — and up to 60 percent of them don't know it. The thyroid can be either overactive or underactive. National Folic Acid Awareness Week - Folic acid is a B-vitamin that is necessary for proper cell growth. If taken before and during early pregnancy, folic acid can prevent up to 70% of some serious birth defects of the brain and spine, called neural tube defects. World Braille Day - January 4 | Braille is a tactile representation of alphabetic and numerical symbols using six dots to represent each letter and number, and even musical, mathematical and scientific symbols. Braille (named after its inventor in 19th century France, Louis Braille) is used by blind and partially sighted people to read the same books and periodicals as those printed in a visual font. Use of braille allows the communication of important information to and from individuals who are blind or partially sighted, ensuring competency, independence and equality. Kawasaki Disease Awareness Day - January 26 | an illness that causes inflammation (swelling and redness) in blood vessels throughout the body. It happens in three phases, and a lasting fever usually is the first sign. World Leprosy Day January 26 | raises awareness of a disease that many people believe to be extinct. Today it is not just the disease that is forgotten, but the people too. Chronic Traumatic Encephalopathy (CTE) Awareness Day - January 30 | Sadly the disease has been found in youth athletes as well as professional players. This day is to spread awareness that our brains are very fragile and need protection. Helmets do not protect from CTE. Martin Luther King Jr. Day - January 20 | Martin Luther King Day is a United States federal holiday. It is celebrated annually on the third Monday of January and is also known as King Day or MLK Day. In some states it is also commonly referred to as Civil Rights Day or Human Rights Day. In recent years it is increasingly seen to be a 'Day of Service' when Americans are encouraged to volunteer to help others less fortunate than themselves. Martin Luther King Day commemorates the birthday of American civil rights leader Reverend Dr. Martin Luther King, Jr., and celebrates his life, achievements and legacy. King was hugely influential in the American Civil Rights Movement (despite never holding public office) and was a major advocate of non-violent activism in the struggle for the end of racial discrimination under US law. He was assassinated in 1968. This federal holiday in King's honor was created in 1983, during the presidency of Ronald Reagan, and first observed in January 1986. It is sometimes also referred to as "Civil Rights Day" or "Human Rights Day". Moebius Syndrome Awareness Day January 24 One of the more popular questions we get from travelers is: “Can I travel with my medication.” The answer is yes, with some qualifiers. Here are a few tips that you might find helpful. It is not necessary to present your medication to, or notify an officer about any medication you are traveling with unless it is in liquid form (See next bullet). Medication in liquid form is allowed in carry-on bags in excess of 3.4 ounces in reasonable quantities for the flight. It is not necessary to place medically required liquids in a zip-top bag. However, you must tell the officer that you have medically necessary liquids at the start of the screening checkpoint process. Medically required liquids will be subjected to additional screening that could include being asked to open the container. You can bring your medication in pill or solid form in unlimited amounts as long as it is screened. You can travel with your medication in both carry-on and checked baggage. It’s highly recommended you place these items in your carry-on in the event that you need immediate access. TSA does not require passengers to have medications in prescription bottles, but states have individual laws regarding the labeling of prescription medication with which passengers need to comply. Medication is usually screened by X-ray; however, if a passenger does not want a medication X-rayed, he or she may ask for an inspection instead. This request must be made before any items are sent through the X-ray tunnel. Nitroglycerin tablets and spray (used to treat episodes of angina in people who have coronary artery disease) are permitted and have never been prohibited. For more information, you can contact: TSA Contact Center - The TSA Contact Center is here to help travelers prepare for upcoming flight. Whatever your question about traveling through TSA security, whether at the checkpoint or for checked baggage, we will get you an answer. The hours are Monday - Friday, 8 a.m. - 11 p.m., Eastern Time; weekends and federal holidays, 9 a.m. - 8 p.m., Eastern time. The TCC can be reached at 866-289-9673. Passengers can also reach out to the TSA Contact Center (TCC) with questions about TSA procedures, upcoming travel or to provide feedback or voice concerns. TSA Cares Help Line - TSA Cares is a help line to assist travelers with disabilities and medical conditions. TSA recommends that passengers call 72 hours ahead of travel for information about what to expect during screening. Travelers may call TSA Cares toll free at 1-855-787-2227 prior to traveling with questions about screening policies, procedures and what to expect at the security checkpoint. TSA Cares will serve as an additional, dedicated resource specifically for passengers with disabilities, medical conditions or other circumstances or their loved ones who want to prepare for the screening process prior to flying. Travelers may also request a Passenger Support Specialist ahead of time by calling the TSA Cares hotline at 1-855-787-2227. The hours of operation for the TSA Cares help line are Monday through Friday 8 a.m. - 11 p.m. Eastern Time and weekends and Holidays 9 a.m. - 8 p.m. Eastern Time. Travelers who are deaf or hard of hearing can use a relay service to contact TSA Cares or can e-mail TSA-ContactCenter@tsa.dhs.gov. Know How You Can Travel With Medication - TSA Travel Tips The Louisiana Developmental Disabilities Council adopted its 2020 Legislative Advocacy Agenda with input from its grassroots advocacy network (LaCAN) and Families Helping Families (FHF) Centers. Thank you to all the LaCAN members who attended the community input meetings and reached out to their LaCAN Leaders and FHF Centers to share their agenda recommendations. Nine items are included on the agenda to enhance access to home and community-based services and address how students with disabilities are treated and served in schools. Home and Community-Based Services As it has done for decades, the Council will advocate for increased availability of home and community-based supports and services so people with developmental disabilities can remain in their own homes and be fully participating members of their communities. Advocacy efforts will focus on increased funding for Families Helping Families Centers and the State Personal Assistance Services (SPAS) program in addition to an increased rate for home and community-based providers. Also included on the agenda was the need to increase the skilled nursing rate in the waivers and through Early and Periodic Screening, Diagnostic and Treatment (EPSDT) and expanding Medicaid to cover diapers and wipes for all ages and dental care for adults. Since a settlement agreement between the Louisiana Department of Health and the Advocacy Center addresses the issue related to access to skilled nursing this item is no longer included in the Council's Advocacy Agenda for 2020. Education The Council will also continue to advocate for special education policies and practices to ensure student safety such as requiring cameras to be installed in special education classrooms upon request. The need for school resource officer training as it relates to students with disabilities and training for teachers on how to handle students with challenging behaviors was also included on the agenda. Fact Sheets The fact sheets below were developed based on information available at this time. Increase Funding for the Families Helping Families Regional Resource Centers Fully Fund State Personal Assistance Services (SPAS) Increase Home and Community-Based Provider Rates Require Cameras in Special Education Classrooms Upon Request LaCAN members are also encouraged to share the Developmental Disability Services in Louisiana fact sheet with newly elected state Representatives and Senators to educate them on what a developmental disability is and services available to individuals and families throughout the state. Get Involved Individuals with disabilities, family members and advocates are encouraged to participate in advocacy efforts including legislative visits, yellow shirt days and action alerts. In lieu of roundtables this year, members are encouraged to attend member meetings in their area to learn more about the advocacy agenda and the many advocacy opportunities throughout session. If you are interested in visiting legislators, attending member meetings, and sharing your personal story as it relates to these issues at other advocacy events, contact your LaCAN Leader or FHF Center today! Council's 2020 Legislative Agenda U.S. Department of Homeland Security 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.