What's Going ON?
COVER STORY
Joins Forces with Families Helping Families P.19
ISSUE 38
Exceptional
Free Webinars and Training P.14
MAGAZINE
APR | MAY | JUN 2023
The Season of Hope P.04
TIMES
DYLAN CREWS
From the director, Mary Jacob
Work. Save. Play. PLANNING REWARDING EXPERIENCES FOR INDIVIDUALS WITH DISABILITIES P.22
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2nd Quarter Apr | May | Jun 2023
BOARD OF DIRECTORS Gregory Brenan, CPA, CCIFP, CGMA Jo Ann D. LoRusso, Ph.D. Denise Barrera, MPH, MSW Debra Dixon M.Ed.+30 Ashley Bourg Michelle Archambault, CPA/PFS
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Progression - Is the World Catching On
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Carnival
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Special Education Advisory Panel Recruiting
SEAs for Autism
2023 Legislative Session: Disability Related Legislation | LDDC 2023 Legislative Advocacy Agenda
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CONTENTS
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.
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Early Learning Updates
22 COVER STORY: Work. Save. Play. Planning Rewarding Experiences for Individuals with Disabilities
Individuals with Disabilities and Hurricane Preparedness
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Louisiana Mourns the loss of our very own Disability Rights Advocate, Lynette Fontenot
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The ARC's Wings for Autism®/Wings for All
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IDEA Advocacy Training Study for Parents & Students/Young Adults
Youth Virtual Hangout | Independent Futures that Work
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Awareness Calendar
Summer Fun Digital Magazine
How Mental Health Advocacy Is Important To All
OUR TEAM executive director MARY JACOB mjacob@fhfofgno.org - Ext. 207 director of training SHARON BLACKMON sblackmon@fhfofgno.org - Ext. 204 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 director of peer-to-peer support LAURA S. NATA lsnata@fhfofgno.org - Ext. 209 community resource specialist STEVEN NGUYEN snguyen@fhfofgno.org - Ext. 212 director of administrative services DENISE SWEATMAN dsweatman@fhfofgno.org - Ext. 203 special project consultant JESSICA RODRIGUE jrodrigue@fhfofgno.org
LSU Human Development Center Recruiting for Louisiana LEND
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Dylan Crews Joins Forces with Families Helping Families
The World Mourns the passing of Judy Huemann, Disability Rights Advocate
Exceptional Times
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U.S. based Legoland Parks to become Certified Autism Centers by Spring 2023
Louisiana School Finder | Recorded Training
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The Season of Hope
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Have Wheelchair Will Travel
700 Hickory Avenue Harahan, LA 70123 504.888.9111 | 800.766.7736 info@fhfofgno.org | fhfofgno.org
Supreme Court Rules Against the District in Perez v. Sturgis Public Schools Special Ed Case
GiveNOLA May 2, 2023 Early Giving Period TBA
Spring has sprung. Spring is when the natural world recovers and strengthens after the colder winter months. During spring, dormant plants begin to grow again, new seedlings sprout out of the ground, hibernating animals awake, and daylight savings time has started. Spring is filled with vacations, graduations, and celebrations like weddings and babies. It's also when we are moving into the last part of our school year. My teacher friends tell me this is the home stretch and often is the most exhausting time of the year. I have no doubt teachers are exhausted and ready to wrap up the year, but this is also when many families face the reality of limited summer options. They hope they can find a camp willing to accept their child. They hope their child qualifies for the extended school year program. They hope they will identify any type of childcare to help during the summer. The season of hope can quickly turn into hopelessness when they face the reality of what's not available for their child, often prematurely determined by people who have never met their child and are clueless about their abilities. Did you know that systems or organizations cannot just exclude your child based on a disability? Did you know you can challenge Extended School Year program denials? It's time for parents to own their rights and challenge exclusions not based on accurate data and evidence. It's time for parents to step up and stop accepting what's not available and start demanding access to what should rightfully be available for their children with disabilities. We must hold decision-makers accountable for their bad decisions. We must stop accepting apologies and excuses for the lack of oversight. As an agency, we want to believe there is still hope for people to do the right thing. But we are ready to promote more civil rights complaints when organizations, schools, and systems discriminate. Let's rally together to ensure all children have access to high-quality, inclusive programs throughout the year.
by Mary Jacob
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2023 SUMMER FUN DIGITAL MAGAZINE Summer is on its way and we have just what you need to make it a success in the pages of our Summer Fun Digital Magazine. Check out the "5 Tips to Prevent Summer Slide" and all the fun and entertaining activities for you and your children to do at home both indoors and outdoors. You'll find a statewide list of special needs and inclusive summer camps, special needs swimming lessons, and adaptive sports for kids and adults. There is something for everyone in this edition of Summer Fun.
Now in its 10th year, GiveNOLA Day is a 24-hour event hosted by the Greater New Orleans Foundation. Together, let’s inspire people to give generously so that we can make our region stronger and creating a thriving community for all. Families Helping Families of Greater New Orleans (FHFofGNO) asks for your support. On May 2, 2023, you can use this direct GiveNOLA link to make your tax-deductible donation to our organization. For the thousands of families that contact us, FHF of GNO gives parents of and children/adults with disabilities knowledge, support and confidence, always free of charge. Changing Lives. Every Day.This is what we do.While changing lives – we are also creating memories. We receive lovely notes of gratitude and witness many successes with the families we help support. Visit our success stories page on our website to read some of these amazing stories. We hope this page makes you smile as much as it makes us smile every day! Your donation will help us continue providing support to the over 6,000 requests we receive annually. Thank you all for your continued support.
Progression - Is the World Catching On?
by Bebe Bode
continued on p.28
The first time I planned a vacation to Disney World for our family, I had all the fears that all parents have when bringing little ones far away from home. But in my case, I had an 8-year-old son with autism (Seth) who wandered, had sensory issues and meltdowns, didn’t like to wait, and could not communicate very well. I also had his 2-year-old baby brother, Parker.
It was rare for Seth to enjoy outings, but he liked it when we went to a Disney movie or went to the Disney Store. He enjoyed several Disney books and had many Disney movies, character toys, and stuffed animals. I prayed this trip would be a good fit for him and something that he and his brother could enjoy together. Like every parent, I wanted everything to go as smoothly as possible. I budgeted, researched the best times to go to Disney when it wasn’t as crowded, and looked for anything I could find at the time on how to best prepare a child with autism for a vacation. I decided to take what I learned from Carol Gray, the author of My Social Stories Book. Social stories are visual preparations explaining social situations to children with autism to help them learn ways of behaving in these situations. I wrote four social stories, “Lets Pack,” “Travel Time,” “Disney Fun,” and “Time to go Home.” I read these stories to both of my boys and they loved them. They were eager to help pack, get on the road, and have some Disney fun. I am going to age myself here and tell you this trip took place in 2003. In 2003, the autism prevalence was 4 to 6 children in 1,000. At the time, Disney Guest Services had a very little known disability pass that allowed individuals with disabilities who had difficulty waiting in line to access rides without waiting. The pass was a card that you could show the Disney cast member at the ride, and this would allow your family to access the ride before others who had been waiting. As promised, IT WORKED! In fact, we were either the only ones in line with a disability access pass or with only a few other families with passes on some of the more popular rides. We did not wait in line at all; we had immediate access. The only time we did wait in line was to meet a character. There were a couple of sensory overload challenges, but we took breaks and provided support through them. For me, the best part of this trip was getting to see my boys engaging with each other and the characters, and to see Seth finally excited about something, enjoying himself, and participating with his family. We’ve Come a Long Way We are very fortunate to have been able to go to Disney World several times after our 2003 trip and each time our experience with the Disability Access Pass was different. I believe Disney began with very good intentions, but with disability numbers soaring and certain people taking advantage of a good thing, unfortunately, it has led to waiting times soaring and many changes to the Disney Accessibility Services. When you compare today’s statistics of autism to the number of people diagnosed in 2003, it is just downright scary. According to a new study released from the Centers for Disease Control (CDC), in the United States alone 1 in 36 children has been identified with autism spectrum disorder (ASD). In addition, Down syndrome occurs in about 1 in every 700 babies, and 1 in 6 children aged 2–8 years (17.4%) had a diagnosed mental, behavioral, or developmental disorder. (Prevalence of mental disorders change with age). The above statistics are just for children, but disability affects us all. Up to 1 in 4 (26%) adults in the United States have some type of disability. One billion people, or 15% of the world's population, experience some form of disability, and disability prevalence is higher in developing countries. Now, not all of these people are converging on Disney all at once. However, I can testify that during our trips to Disney through the years, I have noticed a steady increase in the number of individuals using wheelchairs and who have cognitive disabilities. Families are Traveling More My family went to Disneyland in California for two days during the week of Mardi Gras 2023. When standing in line at two different attractions, we met the mother of a son with autism, a sister with a brother who has autism, then sat next to a family at lunch who had a son with autism. Also, we met a young man with autism, his parents, and his support dog at the airport when we were coming home. They had been to Disneyland as well and were heading back home to Florida. Are we autism magnets, or could this mean that many families of and individuals with disabilities are traveling and vacationing more, flying, going to theme parks, cruises, and more? Is the world catching on? We can only hope! I learned about some organizations that provide cognitive disorder training and certification. Let's take a look at what they are doing. The International Board of Credentialing and Continuing Education Standards (IBCCES) IBCCES offers training in autism and cognitive disorder certifications for travel and entertainment industries, educators, healthcare providers, and more. When families with autistic individuals travel, they have a range of concerns that go beyond the typical family. They know whoever plans their trip needs to understand their unique situation, and that’s why they often look for a travel professional certified in autism to be the resource they need. IBCCES created an online training and certification program to help travel professionals assist families and individuals with special needs to prepare for their dream vacation. A Certified Autism Travel Professional™ (CATP) is defined as a professional who has demonstrated that they are both knowledgeable and capable of providing support and travel-related services to an individual on the autism spectrum as well as their family. Amusement Parks and Attractions IBCCES evidence-based training and certification programs provide professionals with a better understanding of autism and other neurodivergencies. IBCCES provides a series of certifications that empower professionals to be leaders in their field and improve the outcomes for the individuals they serve. Luckily, many amusement parks and attractions are providing their staff with IBCCES training and certification. Now, there are several theme park options to choose from so that everyone in the family can enjoy the fun. Requesting Accommodations - the IBCCES Accessibility Card Requesting accommodations at an attraction can be stressful and frustrating. IBCCES created the digital IBCCES Accessibility Card (IAC) as a free resource for individuals who need to request accommodations or assistance at participating amusement parks and attractions. The IAC helps identify accommodations needed and expedite the process at parks and attractions. Register for your IAC 48 hours prior to your planned visit to a park. The IAC card is good for 1 year following the registration date and can be updated or renewed as many times as needed. Who is Eligible to Register? Any individual asking for accommodations can register for the IBCCES Accessibility Card. Examples of needs or accommodations requests include but are not limited to: Cannot stand in line for a long period of time Requires ride harness or other supports Sensory sensitivities Wheelchair access Physical or mobility restrictions Require visual assistance or guidance Special dietary needs. Find out everything you need to know about the Accessibility Card by visiting the IBCCES website at https://accessibilitycard.org/. IBCCES Autism Travel Taking a vacation together as a family can be challenging. Autism Travel provides families and individuals with easy access to destinations and attractions that are trained and certified in autism and special needs care. Destinations Certified Autism Travel Professional™ (CATP) Travel Agent Provider Search Travel Tools Autism Travel Guide (note *2022 guide) KULTURECITY KultureCity is a nonprofit organization which trains staff at venues and then certifies venues which have sensory inclusive modifications. The organization also provides apps for Apple and Android devices which list Sensory friendly venues to assist those with Sensory processing disorders. KultureCity's tagline is Make the Nevers Possible, and they are committed to just that. They believe that individuals with sensory sensibilities or invisible disabilities should not miss out on special events, experiences and dreams. At KultureCity, they create sensory accessibility and inclusion for all. KultureCity caters to everyone with sensory needs, not just autism. This includes military vets with PTSD, adults with dementia, Parkinson's disease, and stroke patients just to name a few. They have certified concert, sports and entertainment venues and stadiums, amusement parks, Carnival cruise line, law enforcement, and many more. Carnival is the first cruise line to be certified "sensory inclusive" by KultureCity. How do they do this? KultureCity partners with venues to provide training and tools to venues and events. The "Sensory Inclusion Certification" process involves training of venue staff by leading medical professionals regarding how to recognize those guests with sensory needs. Accommodations are meant to serve those with autism, dementia, PTSD, and more. The organization also trains and certifies police department personnel. They provide details of items which can be included in a special sensory bag which can be made available to those who have sensory sensitivities. Beginning in 2020 KultureCity organized sensory inclusive venues and events which included the NFL Pro Bowl, Super Bowl and the Pro Football Hall of Fame; Sixteen NBA arenas, 5 NFL stadiums, 5 NHL arenas, zoos, and many other venues in the United States. Where are Certified Sensory locations? To discover certified sensory locations visit https://www.kulturecity.org/, scroll down the page and you will find an interactive map where you can search, or download the app on APPLE or GOOGLE PLAY. It makes my heart happy that these training and certification organizations are in existence and that the world seems to be catching on to the needs of individuals with disabilities, both seen and hidden. They are surely making strides to provide a fun and inclusive experience for everyone. This truly makes a difference in the quality of life for individuals needing these supports and their families. Sources: Carol Gray, New York Times, CNN, CDC Data & Statistics on Autism Spectrum Disorder, Data and Statistics on Down Syndrome, Data and Statistics on Children’s Mental Health, The World Bank, International Board of Credentialing and Continuing Education Standards, KultureCity, and Wikipedia.
Judith “Judy” Heumann—widely regarded as “the mother” of the disability rights movement—passed away in Washington, D.C. on the afternoon of March 4, 2023. Judy was at the forefront of major disability rights demonstrations, helped spearhead the passage of disability rights legislation, founded national and international disability advocacy organizations, held senior federal government positions, co-authored her memoir, Being Heumann, and its Young Adult version, Rolling Warrior, and was featured in the Oscar-nominated documentary film, Crip Camp: A Disability Revolution. Born in 1947 in Philadelphia and raised in Brooklyn, New York to parents Ilse and Werner Heumann, Judy contracted polio at age two. Her doctor advised her parents to institutionalize her when it was clear that she would never be able to walk. “Institutionalization was the status quo in 1949,” she wrote. “Kids with disabilities were considered a hardship, economically and socially.” When Judy attempted to enter kindergarten, the principal blocked her family from entering the school, labeling her a “fire hazard.” However, her parents, particularly her mother, fought back and demanded that Judy have access to a classroom. Judy eventually was able to attend a special school, high school, Long Island University (from which she earned a B.A. in 1969), and the University of California, Berkeley, where she earned a Master’s in Public Health six years later. In the 1960s, Heumann attended Camp Jened, a summer camp for people with disabilities in the Catskills, and she later returned there as a counselor in the 1970s. Several of the leaders of the disability rights movement also were at Camp Jened, which was the focus of the documentary Crip Camp. During the same decade, the New York Board of Education refused to give Judy a teaching license because they feared she could not help evacuate students or herself in case of fire. She sued and went on to become the first teacher in the state to use a wheelchair. Continuing her fight for civil rights, Judy helped lead a protest that shut down traffic in Manhattan against Richard Nixon’s veto of the 1972 Rehabilitation Act, and she launched a 26-day sit-in at a federal building in San Francisco to get Section 504 of the revived Rehabilitation Act enforced. Judy was instrumental in developing and implementing national disability rights legislation, including Section 504, the Individuals with Disabilities Education Act, the Americans with Disabilities Act (ADA), the Rehabilitation Act, and the UN Convention on the Rights of Persons with Disabilities. In addition, Judy helped found the Berkley Center for Independent Living, the Independent Living Movement, and the World Institute on Disability. She also served on the boards of the American Association of People with Disabilities, the Disability Rights Education and Defense Fund, Humanity and Inclusion, Human Rights Watch, the United States International Council on Disability, Save the Children, and several others. In 1993, Judy moved to Washington, D.C. to serve as the Assistant Secretary of the Office of Special Education and Rehabilitation Services in the Clinton Administration, a role she filled until 2001. From 2002-2006, she served as the first Advisor on Disability and Development at the World Bank. From 2010-2017, during the Obama Administration, she worked as the first Special Advisor for International Disability Rights at the U.S. State Department. She also was appointed as Washington, D.C.’s first Director for the Department on Disability Services. “Some people say that what I did changed the world,” she wrote, “But really, I simply refused to accept what I was told about who I could be. And I was willing to make a fuss about it.” In addition to her advocacy work and busy professional life, Judy loved to attend musicals and movies, travel the world, make new friends, and hang out with old ones, many of whom were introduced to each other at dinners that she convened. Judy learned Hebrew as a child, became Bat Mitzvahed as an adult, and was a long-time member of the Adas Israel congregation. Judy is survived by her loving husband, Jorge Pineda, her brother, Ricky, wife Julie and her brother Joseph and wife Mary, her niece Kristin, grand nephew Orion and many other members of both the Heumann and Pineda families. She had many close friends that will miss her dearly.
The World Mourns the Passing of Judy Heumann, Disability Rights Activist
Judith “Judy” Heumann (1947-2023)
Photographer: Neha Balachandran (IG:@jeevanportraits)
The Supreme Court sided unanimously Tuesday, March 21, 2023, with a student who is deaf and who sought to sue his school for damages over profound lapses in his education, a case that experts say could give parents of students with disabilities more leverage as they negotiate for the education of their children. However, the 9-0 decision in Perez v. Sturgis Public Schools did not address whether IDEA’s requirement to exhaust its administrative process can be sidestepped in cases where completing the process would be “futile” and whether ADA should provide financial compensation to Miguel Perez, the plaintiff. From ages 9 through 20, Miguel Luna Perez attended schools in Michigan’s Sturgis Public School District. Because Mr. Perez is deaf, Sturgis provided him with aides to translate classroom instruction into sign language. For years, Mr. Perez and his parents allege, Sturgis assigned aides who were either unqualified (including one who attempted to teach herself sign language) or absent from the classroom for hours on end. Along the way, Sturgis allegedly misrepresented Mr. Perez’s educational progress too, awarding him inflated grades and advancing him from grade to grade regardless of his progress. Based on Sturgis’s misrepresentations, Mr. Perez and his parents say, they believed he was on track to graduate from high school with his class. But then, months before graduation, Sturgis revealed that it would not award him a diploma. In response to these developments, Mr. Perez and his family filed a due process complaint with the Michigan Department of Education alleging violations of laws including ADA and IDEA, the parents and district agreed to a settlement where Perez received full relief under his IDEA claim. However, the ADA claim, along with others, was dismissed by the district court, a decision later affirmed by the appeals court. What to know about the Supreme Court's special education decision The case, Perez v. Sturgis Public Schools, involved the interplay between two federal laws, the Individuals with Disabilities Education Act, or IDEA, and the Americans with Disabilities Act. At issue was whether students may sue a school for damages under the ADA when they haven’t exhausted the administrative process required by the IDEA. In the unanimous decision Tuesday, the high court ruled that Perez didn't need to exhaust the requirements of the IDEA process before filing a lawsuit for damages under the ADA. The decision may help parents and schools clarify one piece of an excessively complicated puzzle of laws that govern the nation's 7.2 million special education students. Experts have predicted it may give parents more leverage in their negotiation with schools. Leading up to the Supreme Court oral arguments in January, special education attorneys speculated the case could “destroy the possibility of settlement agreement in special ed litigation” if judges decided in line with the appeals court. However, on Tuesday, justices in fact overturned the lower court’s ruling. Sources: K-12 Dive News, Justia, U.S. Supreme Court, USA Today.
The decision means students and families will not have to exhaust the IDEA process to claim damages under ADA.
Advancing racial equity in early intervention and preschool special education - Office of Special Education Programs - funded Early Childhood Technical Assistance Center (ECTA) updated fact sheets that provide key information and supporting evidence about racial disparities and inequities for young children with a disability and questions for state and local leaders seeking to advance equity for all children with disabilities and their families. What is known about equity, or lack thereof, for early intervention (Part C) and early childhood special education (Part B, Section 619) authorized under the Individuals with Disabilities Education Act needs further research. ECTA intentionally included research on school-age children with disabilities and on school-age workforce knowing there are insights and lessons for the early years. The President’s FY24 Budget - The President’s FY24 budget proposes a $600 billion mandatory investment to expand access to affordable, high-quality child care, provide universal preschool, and boost wages for Head Start teachers. The funding would subsidize high-quality child care for children ages birth to five, and fund federal-state partnerships to provide high-quality, universal, free preschool for 4-year-olds. Taken together, these are the largest proposed investments any President has ever recommended for early childhood. Calling For the End to Corporal Punishment In Schools - The Department issued a Dear Colleague Letter on March 24 calling for the end to corporal punishment in schools. Secretary of Education Miguel Cardona urged an end to the practice of paddling, spanking, or otherwise imposing physical punishment on students. The letter reinforces the Department's position that corporal punishment in schools should be replaced with evidence-based practices, such as implementing multi-tiered systems of support that create a safe and healthy school environment. The Department also released guiding principles on how to maintain safe, inclusive, supportive, and fair learning environments for students and school staff, including specific recommendations for evidence-based practices to give students what they need to learn and grow. Accurate IDEA Data to Address Significant Disproportionality The Department has proposed a priority and requirements for a National Technical Assistance Center to Improve State Capacity to Collect, Report, Analyze, and Use Accurate IDEA Data to Address Significant Disproportionality under the Technical Assistance on State Data Collection program, Assistance Listing Number 84.373E. This action will focus attention on an identified national need to provide technical assistance to improve the capacity of states to meet the data collection requirements under Part B and Part C of the Individuals with Disabilities Education Act. This center would customize its technical assistance to meet each state's specific needs to support states in collecting, reporting, and determining how to best analyze and use their data to address issues of significant disproportionality. Public Comments Due June 12, 2023.
The Special Education Advisory Panel (SEAP) is currently accepting applications for new membership. SEAP advises and assists the Louisiana Department of Education (LDOE) with the provision of free and appropriate public education (FAPE) for students with disabilities and provides guidance on special education programs and services. SEAP is seeking to fill the following seven (7) vacancies: A parent of a child with a disability (birth to 26) An individual with a disability A higher education institution representative who prepares special educators or service providers A state juvenile corrections or adult corrections agency representative A private school representative A teacher An administrator of a program for students with disabilities. Those interested in serving on SEAP and would like to be considered for membership can fill out the application here. Once completed, please email the application to specialeducation@la.gov by April 14, 2023.
Our calendar is packed with interesting and informative training opportunities this quarter!
STUDENTS and Young Adults with IEPs or formerly with IEPs, ages 14 to 16 Learn about IDEA and Federal Level Advocacy!
Individuals with Disabilities Education Act (IDEA) Advocacy Training Study Saturday, April 22, 2023 9:30 AM - 3:30 PM Jefferson Parish Eastbank Regional Library 4747 W. Napoleon Avenue Metairie, LA 70001 Expectations Attend a free 6-hour training focused on IDEA and legislation advocacy Participate in a focus group Complete surveys Be videotaped Receive 2 - $25 gift cards Lunch & snacks provided A copy of your edited videotaped testimony Door prizes & Swag Funding provided by the Spencer Foundation in collaboration with Families Helping Families of GNO.
Parents Register Here
FOR PARENTS & CAREGIVERS OF STUDENTS WITH IEPs Learn about IDEA and Federal Level Advocacy!
These education-related courses are being highlighted as ones you won't want to miss. Education and Young Children with Exceptionalities. Caring for a young child with a disability is already overwhelming, and then they begin their education journey and even more knowledge and responsibility is required. This webinar can lighten the load. Top Tips for an Effective IEP Meeting. This webinar will break down the IEP meeting preparation into three steps: before, during, and after the meeting. Implementing our top tips in each of these steps should result in a better IEP experience. When Parents and School Disagree. This training session will delve into Louisiana’s Special Education dispute resolution options and what to do when you disagree with the school regarding your child’s special education services. Parent Rights in Special Education. In this webinar we discuss the rights that parents have when it comes to their child’s special education and related services. The Importance of Inclusion. You will learn why inclusion is important in the community and in classrooms, what inclusion it is and is not, who is involved in making meaningful inclusion successful, and the demand for inclusion in federal law. The Bridge from High School to Postsecondary Services . Learn more about understanding the Individual Transition Plan (ITP) process as it pertains to postsecondary education and other related services. We will also provide an overview of programs and resources available to your child entering postsecondary education or employment. No More Summer Slide. Learn some strategies and fun activities you can do over the summer to keep your child engaged in educational activities to help prevent learning loss and regression (aka) Summer Slide. In addition to the highlighted trainings listed above, we offer several more. All classes are FREE and relevant for parents, caregivers, and professionals working with school-aged children. For dates, times, and registration links to any of our online classes, visit the Training Calendar on our website. Louisiana families needing accommodations to attend one of our webinars, please contact our Director of Training, Sharon Blackmon at sblackmon@fhfofgno.org.
Student/Young Adult Register Here
Questions or need help registering, contact Steven Nguyen - snguyen@fhfofgno.org (504) 888-9111 Zach Rosetti - zsr@bu.edu (617) 353-6419 Meghan Burke - Meghanbm@illinois.edu (217) 300-1226
What is LEND? The Leadership Education in Neurodevelopmental and Related Disabilities (LEND) is a nine-month interdisciplinary training program that incorporates both didactic and experiential learning in clinical and community-based settings. LA LEND prepares graduate students, family members, self-advocates, and practicing professionals to become future leaders in designing and implementing services, policies, advocacy, and consuming/conducting research and evaluation addressing the needs and priorities of children with autism spectrum disorders (ASD), other neurodevelopmental disabilities (NDD) and developmental disabilities (DD) and their families. Who should aply to LEND? Graduate students (in at least second year of program) interested in becoming leaders in diverse fields such as: Education, Early Childhood, Special Education, Audiology, Medicine, Nursing, Occupational Therapy, Physical Therapy, Psychology, Public Health, Social Work, Speech Language Pathology, and Others Self-advocates interested in becoming better informed leaders and more effective advocates. Family members of individuals with disabilities interested in becoming better informed leaders and more effective advocates. Practicing professionals in fields related to healthcare, special education, ASD/NDD/DD, or other related areas. There are 60 LEND programs in every state, the District of Columbia, the United States Virgin Islands, Puerto Rico, and six Pacific Basin jurisdictions, either as an awardee or in partnership with a LEND program. As a LEND scholar, you will be connected to a national network of other programs throughout the nation. The Human Development Center leads the Louisiana LEND program. Learn more about the LEND programs from the Association of University Centers on Disabilities (AUCD) here. LEND improves your knowledge and skills related to: Autism Spectrum Disorder(ASD) other Neuro- and Developmental Disabilities (NDD/DD) Social Determinants of Health Life Course Theory Interdisciplinary thinking and practice Family- and person-centered care Leadership and advocacy skills LEND 2023-2024 Applications Now Open!!! LEND applications for the 2023-2024 cohort are due on April 15, 2023. APPLY HERE
Hurricanes are dangerous and can cause major damage from storm surge, wind damage, rip currents and flooding. They can happen along any U.S. coast or in any territory in the Atlantic or Pacific oceans. Storm surge historically is the leading cause of hurricane-related deaths in the United States.
Prepare for Hurricanes Hurricanes are not just a coastal problem. Find out how rain, wind, water and even tornadoes could happen far inland from where a hurricane or tropical storm makes landfall. Start preparing now. Those with Disabilities Disability intersects every demographic group—there are people with disabilities of all ages, races, genders or national origin. And, disabilities can impact a person in a variety of ways—both visible and invisible. For people with disabilities and their families, it is important to consider individual circumstances and needs to effectively prepare for emergencies and disasters. Get Informed Know what disasters could affect your area, which ones could call for an evacuation and when to shelter in place. Keep a NOAA Weather Radio tuned to your local emergency station and monitor TV and radio. Follow mobile alerts and warnings about severe weather in your area. Download the FEMA App and get weather alerts from the National Weather Service for up to five different locations anywhere in the United States. Make a Plan In the event of a disaster could you make it on your own for several days? After a disaster you may not have access to a medical facility or even a drugstore. It’s crucial to plan for your daily needs and know what you would do if they become limited or unavailable. Additional planning steps include: Create a support network of people who can help you in a disaster. Keep a contact list in a watertight container in your emergency kit or on your electronic devices. Inform your support network where you keep your emergency supplies. You may want to consider giving a trusted member a key to your house or apartment. Plan ahead for accessible transportation that you may need for evacuation or getting around during or after disaster. Check with local transit providers as well as with your emergency management agency to identify appropriate accessible options. Many city and county emergency management agencies maintain voluntary registries for people with disabilities to self-identify in order to receive targeted assistance during emergencies and disasters. Contact your local emergency management office to find out more. If you are on dialysis or other life-sustaining medical treatment know the location and availability of more than one facility that can help you. If you use medical equipment in your home that requires electricity, talk to your doctor or health care provider about what you may be able to do to keep it running during a power outage. You can also ask your power provider to put you on a list for priority power restoration. About half of all Americans take a prescription medicine every day. An emergency can make it difficult for them to refill their prescription or to find an open pharmacy. Organize and protect your prescriptions, over-the-counter drugs, and vitamins to prepare for an emergency. Wear medical alert tags or bracelets. Also add pertinent medical information to your electronic devices. If you have a communication disability consider carrying printed cards or storing information on your devices to inform first responders and others how to communicate with you. If you use assistive technologies, plan how you will evacuate with the devices or how you will replace equipment if lost or destroyed. Locate and access your electronic health records from a variety of sources by using the U.S. Department of Health and Human Services' online tool. Plan for children and adults who may have difficulty in unfamiliar or chaotic environments. Consider your service or support animal or pets and plan for food, water and supplies. If you need to evacuate, you’ll need to know whether your shelter allows pets or not, since some shelters only allow service or support animals. Keep a list of the nearest medical facilities, local hospitals and nearest transportation.
Get Your Benefits Electronically A disaster can disrupt mail service for days or weeks. If you depend on Social Security or other regular benefits, switching to electronic payments is an easy way to protect yourself financially before disaster strikes. It also eliminates the risk of stolen checks. The U.S. Department of the Treasury recommends two safer ways to get federal benefits: Direct deposit to a checking or savings account. If you get federal benefits you can sign up by calling 800-333-1795 or sign up online. The Direct Express® prepaid debit card is designed as a safe and easy alternative to paper checks. Call toll-free at 877-212-9991 or sign up online. Build a Kit In addition to having your basic survival supplies, an emergency kit should have items to meet your individual needs in various emergencies. Consider the items you use every day and which ones you may need to add to your kit.
Dylan Crews, Outfielder for LSU Baseball, has stolen the hearts of many families of children with disabilities or special health care needs by inviting and giving them tickets to LSU baseball games. For some families, it’s the first time they have ever attended a game in Alex Box Stadium. He now joins forces with the Network of Families Helping Families Centers to Support Kids with Disabilities and Special Health Care Needs.
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The DC3HomeRunDerby Dylan is challenging LSU fans and others to a 2023 Home Run Derby. For every home run he hits during the 2023 season, he will personally donate $100 to the Network of Families Helping Families Centers. For every home run his teammates hit during the 2023 season, his family will personally donate $100 to the Network of Families Helping Families Centers. Number 3 led the LSU Tigers with 22 of the 114 Home runs in the 2022 season and hopes to continue his hitting streak into the 2023 season. Dylan and his family hope YOU will join in on the Home Run Derby challenge in one of the following ways: Pledge and Pay Later - This option allows you to pledge a specific dollar amount per home run hit for a specific number of games, and then we will bill you for your tax-deductible donation. You choose the amount, or Donate Now – This allows you to make one or more donations at any time. You can do either of the above options and learn more by visiting dc3homerunderby.org. You can also follow along during the season in our Facebook Group at https://www.facebook.com/groups/dc3homerunderby To follow the LSU Tigers, check out their 2023 schedule. https://lsusports.net/sports/bsb/schedule/
It’s no big secret that traveling has many positive benefits, but for many of us, especially those of us with disabilities, it can also bring on added anxiety and stress! As someone who is a full-time wheelchair user and has traveled extensively over the last few years, I hope this article provides a unique perspective and shares things I have learned throughout the years to make your travels a little bit smoother. First, let’s cover the obvious: Pre-Plan! Pre-Plan! Pre-Plan! If you take away nothing else from reading this article, I hope that you understand the importance of planning ahead for your upcoming trip. Write things down and do research on the places you want to visit ahead of time and know what to expect once you get there. This is especially important when visiting a new city or country for the first time. You can draw inspiration from other disabled travel bloggers. Personally, my favorite bloggers are Cory Lee of Curb Free with Cory Lee and Sylvia Longmire with Spin the Globe. Transportation: Identify transportation options that will get you to your destination efficiently and safely. One thing is for certain, you will never run out of available options. This world has many cars, trains, buses, RVs, ships, and airplanes! Lodging: Finding accessible lodging options can be like finding a needle in a haystack! Thankfully, many hotel chain websites, cruise lines, and short-term rental platforms, like AirBNB and VRBO, incorporate accessibility features into their search engines. This can help you narrow down options that could meet your accessibility demands. I also recommend that you reach out to those places directly and confirm accessibility. This may include asking for pictures of the places you are interested in. In my experience, managers, hosts, and guest service agents have been willing and able to provide those when asked. Pack a little patience as you navigate your adventures. Let us be honest here, there are billions of people in this world, with only a small percentage of us who understand what true accessibility means. This gives us many opportunities to educate others on what our needs are so a little patience and education can go a long way. Do not be afraid to ask for HELP! I get it, sometimes when we ask for help, we end up feeling defeated and like a burden on others, but look at it this way, there is not a person in this world that has not asked for help in some form or another. Unfortunately, sometimes, someone will come up to help you without asking and assume that you need the help. Remember, a little patience and education goes a long way! Helpline: If traveling by air is your mode of transportation, the Transportation Security Administration (TSA) has a dedicated hotline for travelers with disabilities and other medical conditions that can provide assistance and answer your question about screening policies, procedures, and what to expect at the security checkpoint. TSA recommends that you call 72 hours prior to your departure. For more information about TSA Cares, click HERE. In addition, some airlines and cruise lines have a dedicated line as well, so check with your specific airline and cruise line companies. While many disabilities are visible, there are also disabilities that are hidden (not visible). Many airports, including our very own in New Orleans (MSY), are part of the Sunflower Hidden Disability Program. This program allows travelers to obtain a lanyard and/or bracelet to identify that they need a little extra level of help to ensure a positive and safe travel experience. You can learn more about the Sunflower Program at MSY by clicking HERE. With the Amtrak train, discounts may be available for passengers with disabilities and a travel companion. You can find more information about that HERE. Questions regarding accessibility can be made by contacting Amtrak at 1-800-872-7245 or online at www.amtrak.com Laws, Laws and More Laws! Familiarize yourself with local, state, and federal laws of the places you are visiting. For example, here in the United States, we have the Americans with Disabilities Act (ADA), which prohibits discrimination against people with disabilities in all aspects of life. Similarly, the Air Carrier Access Act (ACAA) prohibits discrimination against people with disabilities who fly a U.S. airline. Keep a running list of things you will need for your trip! Checklists and spreadsheets are always helpful for me. Pack the items you will need and leave the rest at home or pick up some of those items when you arrive at your destination. I’ve over-packed before, it can really put a damper on your plans. Package delivery is also an option; just make sure to make arrangements at your lodging facility in advance. Now, let’s take a second to discuss durable medical equipment and medical supplies. I pack more than enough supplies to get me through my trip with a little extra in case of an emergency. My rule of thumb: If I am traveling for 2 weeks, I will bring 3 weeks of medical supplies. PS: If you’re flying, many airlines will waive the fees on baggage and durable medical equipment (IE – Wheelchairs, Walkers, strollers, etc.) if they have been declared as medical devices/supplies. (P.S. This would be a good time to review the Transportation Security Administration’s (TSA) baggage policy. The TSA policy will be linked HERE. In conclusion, traveling can be a fun adventure, with many benefits, for everyone, with and without disabilities. The world has so much to offer, so go out there and explore! Bon Voyage!
by Steven Nguyen
Work. Save. Play. I have embraced this personal philosophy with my own husband and two daughters. It was only natural that I develop policies and practices in my organization, Family Helpers of Greater New Orleans, designed to increase the participation of people with intellectual disabilities in their communities.
Family Helpers of Greater New Orleans (Family Helpers) recognizes that achieving true inclusion requires a person-centered plan of action. This plan must promote a well-balanced lifestyle to include work, learning financial responsibility, involvement in community-based activities, and ….VACATIONS! As the Executive Director of Family Helpers, I have had the immense pleasure of planning and executing many rewarding activities for our consumers. By far, the most enriching experiences are our group vacations. We begin our planning in what we like to call our “bonding sessions.” Here is where those who have decided they would like to participate strategize funding and disability services that are needed for the trip. Participants vote on where they would like to go. We discuss all facets of travel during these quarterly bonding sessions so everyone can participate and provide their input. Once everything is decided on, an itinerary and budget are provided to each person attending. Our recent trip took place from October 27 – November 1, 2022. The team of five participants decided on a road trip to visit Disney Parks, Universal Studios, and SeaWorld. I accompanied them along with two other direct support staff. Some of the ways participants paid for their vacation were with funds they earned from their employment while others used money from an established trust fund. We had an amazing time. At the parks, we used the accessible parking areas and rented wheelchairs from disability services, which worked out very well. In addition to visiting all the amusement parks, we attended dinner shows and ate at a variety of restaurants like Joe’s Crab Shack, Bubba Gump’s Shrimp, and Benihanna’s Japanese Steakhouse, to name a few. We stayed at Reunion Resorts, which was complete with our very own private pool and game room. When we returned to the resort at night, we bonded for hours sharing experiences.
Pool
Game room
Candy enjoying her beautiful bed at Reunion Resorts
Pictured front to back are Melanie, Candy, Rodney, Kelaani, Tammy, and Tim.
By Tammy Johnson, Executive Director Family Helpers of Greater New Orleans
All of the individuals who attended the trip are a part of our Supportive Independent Living program. Our consumers have limited incomes from SSI or SSDI; therefore working affords them the opportunity to save money for a vacation, attend concerts, go to sporting events, and more.
Work. Save. Play. Planning Rewarding Experiences for Individuals with Disabilities
Family Helpers fosters an environment of living one’s best life. It does take a village to make this happen. I want to recognize our community partners: Access to Meaningful Employment, ARC of Greater New Orleans, and Riverside Condominiums for assisting people with disabilities obtain and maintain work so they can afford to travel and enjoy their lives. Quality Support Coordination Services for listening to my dream of taking people out of their communities to give them the opportunity to experience what most only see on a postcard or a television show. Finally, I would like to thank our administrative staff and our direct support professionals for collaborating ideas and continuing to enhance the quality of life for the people we serve. Our most recent bonding session happened on April 1, 2023. Our seasoned travelers decided on New York, Chicago, and Las Vegas as vacation spots to vote on. Las Vegas was the WINNER! I guess we will be practicing saying, “What happens in Vegas…”
"Being at Disney and Universal Studios for Halloween was the best thing ever!" Kelaani
"Disney is the happiest place on earth!" Melanie
"The Pirates of the Caribbean Dinner Show was my favorite!" Candy
I knew that I was living my best life listening to my travel companions talking about the fun they were having.
About Family Helpers of Greater New Orleans Family Helpers of Greater New Orleans has served individuals with intellectual disabilities ranging from birth to 99 years of age in Orleans and Jefferson Parish for 23 years. Family Helpers utilizes funding provided by the following Medicaid Waivers: Children’s Choice, New Opportunities Waiver, Adult Supports Waiver, Residential Opportunities Waiver, and the Long-Term Care PCS Waiver.
"I loved my birthday party in Orlando!" Tim
"I love staying in this home with the game room and pool!" Rodney
December 15, 1969 - March 7, 2023
Lynette Doga Fontenot passed away unexpectedly on March 7, 2023. Lynette's life was well lived as a loving wife, daughter, sister, and friend. She will be remembered for her strength, determination, and loyalty and will be forever cherished for her devotion and commitment as an accomplished artist, motivational speaker, and advocate for disability rights. Lynette was born on December 15, 1969, to Gary and Sheryl Duplechin Doga. Having cerebral palsy since birth, Lynette overcame many challenges in her lifetime. She graduated from Basile High School and Louisiana State University in Eunice. Artist In 1993, an art student observed Lynette using her head pointer to operate her augmentative communication device and decided she could attach a long-handled paintbrush to a headband and teach her how to paint. Lynette decided to use a similar technique by placing the paintbrush in a side ponytail. Since then Lynette became an accomplished artist and attributes all of her success to God. “This can only be possible through God. I paint with my head, but God’s hand guides me through each painting.” Advocate & Motivational Speaker As part of her advocacy work, Lynette served on several committees, such as the Lafayette Parish Disability Awareness Committee, Louisiana Council’s Advocacy Network, LSU Human Development Constituency Advisory Council, Louisiana’s Special Education Advisory Panel, and Louisiana State Improvement Grant. During her eight-year term on the Louisiana State Developmental Disabilities Council, she served two years as Secretary and four years as Chairperson. She was presently the Chairperson of the Governor’s Advisory Council on Disability Affairs, a Suffering Associate member of the Community of Jesus Christ Crucified, and a member of the Statewide Independent Living Council. Her motivational speaking helped countless parents, professionals, and other individuals understand the need to include people with disabilities so that they can succeed and live a quality life. Lynette will be missed dearly by all. Learn more about Lynette by visiting her website at http://www.lynettesart.com/About_Me.html. The next page has two beautiful paintings by Lynette. To view more of her artwork visit http://www.lynettesart.com/My_Paintings.html
Lynette Fontenot's Painting - The Ultimate Form of Love
Lynette Fontenot's Painting - A Day in Time
Theme Park p.7
SEAs for Autism A Cruise Ship Tour Program SEAing is Believing
On February 6, 2023, Legoland Resorts announced that all of its North American theme parks would become Certified Autism Centers (CAC) by March 31. Legoland parks in Florida and California received autism certification in 2022. The company’s newest theme park in New York will receive autism certification when it reopens in March, a news release said. The certification involves specialized training for staff, sensory guides at each ride indicating if are features such as bright lights and loud sounds that might impact visitors who are on the autism spectrum, and also offer low-sensory areas and quiet rooms. “With 1 in 44 children diagnosed with autism in the U.S., we want to build understanding and empathy while also ensuring our teams have the tools and support strategies when engaging with a neurodiverse population,” Scott O’Neil, the CEO of Merlin Entertainments, said in a statement. “Through this certification, we’re providing our guests with more opportunities to create and play their way while supporting parents through every step of the vacation planning journey.” Merlin Entertainments is the parent company of Legoland Resorts. The International Board of Credentialing and Continuing Education Standards (IBCCES) granted these certifications to the various Legoland parks. “IBCCES is honored to work with all Legoland Parks in North America to make sure autistic and sensory-sensitive guests and their families can make treasured memories and enjoy all the amazing experiences Legoland has to offer,” Myron Pincomb, IBCCES Board Chairman, said in a statement. “Our programs will provide long-term support with ongoing training and other supports to the Resorts in achieving their objective of providing accessible options for all visitors.” Source: KTLA5
from Royal Caribbean International
This "FREE" Cruise Ship Tour Program is designed for families who have children with Special Needs that provides an actual experience onboard a Cruise Ship through a 2 to 3 hour tour conducted by the Royal Caribbean International and the "Autism on the Seas" Staff, while a cruise ship is docked in it's home port. GOALS To provide an opportunity for special needs families to experience a cruise ship environment and realize how a cruise vacation can be a TRUE VACATION. To learn and see the differences of cruising on your own utilizing Royal Caribbean International's Autism Friendly Services versus cruising on an "Autism on the Seas" Staff Supported Cruise, so you can make the best choice for your family. THE EXPERIENCE A Cruise Ship Tour, escorted by Royal Caribbean personnel and the Autism on the Seas Staff to many area's of the ship, including cabins, entertainment venues, pool decks, dining rooms, and more. Learn about the accommodations to checking in, boarding, security screening and how shipboard venue accommodations makes vacationing a reality. Lunch will be provided and you will be assisted during lunch by the Autism on the Seas Staff, as we assist families on our Staffed Cruises. Your family will be assisted during the entire tour by the Autism on the Seas Staff. An overview of the "Autism on the Seas" Staff Supported Cruise Services, click here for more information An overview of Royal Caribbean's Autism Friendly Services, click here for more information Who is Eligible? This program is eligible for any special needs family that would benefit from the tour by learning about the special needs accommodations available, and experience a cruise ship environment, to make a family vacation come true. Do to space limitations, guests who have sailed on an Autism on the Seas cruise are not eligible. When are the Tours? The Ship Tours are scheduled throughout the year at various cruise ports around the country. See the Ship Tour Dates / Registration Form for exact dates and Ship Tour Ports. Where are the tours? Tours are conducted at cruise ports in these cities: Baltimore, MD / Bayonne, NJ / Boston, MA / Charleston, SC / Ft Lauderdale, FL / Galveston, TX / Los Angeles, CA / Miami, FL / New Orleans, LA / New York, NY / Norfolk, VA / Pt Canaveral, FL / San Diego, CA / San Juan, PR / Seattle, WA / Tampa, FL How do I Sign Up to Go? Families are selected on a first come/first serve basis. The sooner you REGISTER your family, the sooner you will be chosen. Complete and submit the Registration Form for your opportunity to join a Ship Tour. You may also complete the Registration Form for more information. Ship Tour Dates / Registration Form Are you a seasoned cruiser? Then find out more about the Royal Caribbean vacations for adults and families living with Autism, Down syndrome, and other related disabilities. Autism Friendly Ships. Source: Royal Caribbean International
EVERYBODY IS UNIQUE, EVERYBODY IS FUN That's Why We Celebrate Inclusivity on Absolutely Every Cruise, All Year!
Source: Carnival
Carnival is the first cruise line to be certified "sensory inclusive" by KultureCity, a leading nonprofit dedicated to accessibility and inclusion for individuals with sensory and invisible disabilities. All of Carnival’s guest-facing crew have been trained to understand and help guests with sensory/cognitive needs. The Guest Services and Youth Staff are ready to assist adults, youth and children with sensory-related questions or issues relating to conditions such as Autism, ADHD, Down Syndrome, PTSD, etc. KultureCity Sensory Bags can be checked out for the duration of the cruise (on a complimentary and first-come, first-served basis) by visiting Guest Services or one of our Youth programs. Each bag contains items to help calm, relax and manage sensory overload, and include comfortable noise-canceling headphones, fidget tools, a visual feeling thermometer, and a KultureCity VIP lanyard, to help the staff easily identify a guest. These measures have been proven to be helpful to guests in a variety of venues including stadiums, arenas, amusement parks, and now Carnival ships! Informational videos designed to create greater awareness among all guests, and featuring actor Christopher Gorham, a member of the KultureCity board of directors, are playing in their in-stateroom televisions. If a guest with a sensory or cognitive need is cruising, the family should meet with Guest Services once they are on board to discuss any special accommodations, including a private safety briefing. Youth staff has different resources on-hand to help soothe, calm and entertain children participating in our youth programs: such as weighted vests, conversation cards, sensory games, and other aids. Carnival Cruise Line and KultureCity share a heartfelt commitment to acceptance and inclusivity. Working together, all guests can be the truest versions of themselves onboard a Carnival cruise ship. Carnival is loaded with additional resources and information for traveling with a disability as follows Accessibility Aboard Guests with Mobility Limitations Guests who are Deaf or Hard of Hearing Guest who are Blind or Low Vision Children with Disabilities Medical, Diabetes, Dialysis and Oxygen Guests with Dietary Needs Service Dogs Shore Excursions Web Accessibililty FAQs To learn more about cruising with Carnival, please visit their webpage here.
The Arc’s Wings for Autism®/Wings for All®
2023 Legislative Session: Disability Related Legislation
Making the Skies Friendlier for Everyone Part of living a full life in the community includes being able to travel to faraway locations for both work and pleasure. People with intellectual and developmental disabilities (I/DD) are entitled to this piece of community participation—just like anyone else—and should be able to navigate air transit comfortably to experience the same opportunities as every other traveler. Why It Matters People with autism and other I/DDs often experience barriers to participating in air travel. Airports and airplanes can be overwhelming and full of unexpected and overstimulating variables, such as bright lights, noises, TSA security screening, and crowds. Too often, there is a lack of understanding among airport and airline staff—leading to confusion on how to handle accommodations or unexpected behaviors when a flier is overwhelmed or nervous about navigating the air travel process. Combined, these barriers lead to hesitation and fear, inhibiting participation in air travel. As a result, people can miss out on new experiences and connecting with family members and friends that live far away. What The Arc Is Doing The Arc’s Wings for Autism®/Wings for All® (Wings) program gives families and aviation professionals the confidence to take to the skies with ease by providing an airport “rehearsal,” as well as a presentation on the aircraft features and in-flight safety protocols. Chapters of The Arc, local partners, and airport/airline/TSA personnel work collaboratively to design and carry out each Wings event. For Individuals and Families Wings alleviates some of the stress that people with autism and other I/DDs and their families experience when traveling by air by providing families with the opportunity to experience and learn about how their loved ones will react to different stimuli in the airport. For Aviation Professionals Wings gives airport, airline, TSA professionals, and other personnel the opportunity to observe, interact, and deliver their services in a structured learning environment—improving their disability competency and processes for accommodating ALL passengers who fly. During a Wings Event: Participant Activities Check-in to receive boarding passes Pass through the TSA security checkpoint Wait in the boarding area Board an aircraft (that does not take off) Wings for Autism® was created by Charles River Center, an affiliated chapter of The Arc, in collaboration with the Massachusetts Port Authority. For additional information about bringing Wings to an airport near you, please email wingsforautism@thearc.org.
The 2023 Regular Legislative Session will begin on Monday, April 10, 2023, at the Louisiana State Capitol. The Governor's Advisory Council on Disability Affairs will make recommendations on some bills and resolutions which can be found on the Governor's Office of Disability Affairs' tracking document for disability related legislation. Legislative instruments are currently being tracked and updated daily. Click here to visit the Louisiana Legislative webpage.
LDDC 2023 Legislative Advocacy Agenda
2023 Legislative Agenda The Council will advocate for additional funding for the nine FHF Regional Resource Centers it contracts with. During the last two legislative sessions, an additional $500,000 was added to the Council’s budget specifically for FHF Centers. The Council’s request to include this additional funding in its Fiscal Year 2024 budget was denied leaving these Center’s in an unfortunate situation. Recurring Funding for Families Helping Families Regional Resource Centers The Council will also partner with the Arc of Louisiana to advocate for the funding needed to provide all adults on Medicaid waivers for individuals with intellectual and developmental disabilities (I/DD) with incontinence supplies. Currently, incontinence supplies is covered for children and youth, but this coverage stops at age 21. Fund Incontinence Supplies for Adults with Disabilities The Council will continue its efforts to increase and expand postsecondary inclusive education opportunities in Louisiana for individuals with I/DD. During the last legislative session, the Inclusive Postsecondary Inclusive Education Fund was established. This year, the Council is advocating for an additional $3 million to be added to this fund. Fund New & Existing Postsecondary Inclusive Education Programs for Students with I/DD Finally, the Council will advocate to amend Louisiana’s Open Meetings Law to allow virtual participation of public body members and the general public when no state of emergency or disaster exists, and require official meeting notices include information regarding all available options for the public to participate. Amend Open Meeting Law to Allow for Virtual Representation & Participation in Public Meetings The 2023 Legislative Session begins April 10, 2023 and will conclude on June 8, 2023. For information on how to get involved with LaCAN, please visit their website.
https://thearc.org/our-initiatives/travel/
“We practice resilience not by ignoring our humanity, but by honoring it.”- Aundi Kolber
My Story: I was diagnosed with bipolar 1 disorder December 2015 when I was 25. It was due to my first hospitalization during a manic episode in which I saw hallucinations, experienced extreme paranoia and had grandiose delusions (meaning I felt like a superhero and was elated). When I first arrived in the psych ward, I thought other patients were secretly the FBI being wiretapped to listen to my conversations. It was a very disorienting experience on top of already being in psychosis. When my delusions and overall mania didn’t dissipate completely, I was moved to an inpatient facility for 5 months called The Care Center: Long Term Structured Residence. I became stable almost right away, but I had trouble accepting the label of bipolar. I was always a perfectionist and workaholic. I thought failure would be the end of me, so you can imagine my reaction to having a breakdown. But I learned it wasn’t the end of me. Once I accepted my bipolar, I had a breakthrough. I wouldn’t hide my story for the sake of my image. I would tell it and own it. Owning our struggles helps us find common humanity. Once I owned it, I became an advocate as a writer and a podcast guest on the subject. I had a relapse in October 2017 due to a negligent psychiatrist who didn’t taper me correctly when switching medications due to side effects. The second time I was hospitalized and went to the LTSR also wasn’t the end of me. It was the start of my story. I became purposeful in being happy, and my worth was no longer about what I would produce. My worth wasn’t about working like a machine. Manic Sarah had many benefits but the cost was a lack of balance. Stable Sarah found delight in the simple things and learned how to live for the first time. What is Mental Illness? Mental illness can happen to anyone, but unfortunately, it can go unchecked and unhelped due to shame and stigma. Many people feel it is a failure to fall apart. But often, it can lead to a breakthrough - the step towards gaining a diagnosis and treatment so you can stop suffering. 1 in 5 Americans have experienced a mental health issue. 1 in 10 people have experienced a period of major depression. 1 in 25 Americans have lived with serious mental illness. Suicide is the 10th leading cause of death in the US. There are over 200 mental illnesses. These can be: Anxiety disorders Attention Deficit Disorder or Attention Deficit Hyperactivity Disorder Bipolar Borderline personality disorder, Depression Eating disorder Generalized anxiety disorder, Obsessive Compulsive Disorder Panic Disorder Post-Traumatic Stress Disorder Schizophrenia Social phobia For more information on each one, click here. They can look different for each person, too. While some symptoms are universal, your experience of life is not. Some causes of mental illness are genes, experiences such as traumatic events, brain injury, having another disease such as cancer and isolation. To get a diagnosis you must have your medical history reviewed, a physical exam and a psychological evaluation. But that’s not to say everyone with symptoms of any of these mental illnesses may actually have a mental illness. To feel depressed sometimes, worried about what you’re eating, anxious or other symptoms is part of the human experience. You can have poor mental health and not a mental illness. Self-care is important for both. Treatment is still encouraged to manage your symptoms. Your therapist will help you decide on how intensive your treatment is based on symptoms. So what stops people from getting help? Stigma which is perceived as a mark of disgrace with the diagnosis or person. Then we have stereotypes which are oversimplified generalizations of something or someone. There are 7 types of stigma: Public stigma - The public perception of mental illness which may include fear or misconceptions Self-stigma - Shame for own mental illness Perceived stigma or beliefs others have stigma towards you Label avoidance - Having a diagnosis but not wanting to be known as that diagnosis Stigma by association - Worry about another’s mental illness affecting your image Structural stigma - Institutional stigma affecting opportunities and access Health professional stigma - Your mental illness downplayed by a professional such as a doctor or therapist Sometimes, when you ask for help, you enter the roadblock of ignorance and indifference. That’s why education is so important. It’s important to know that you matter and your story matters. Self-advocacy is key. There’s the suicide hotline which is 800-273-8255 and therapists out there. You can find a therapist here. Open Path offers a tool to find affordable therapists if insurance doesn’t cover it. Tools to Develop Resilience in Recovery and Even Relapse: Note: These are lessons I learned in my mid-to-late twenties when first diagnosed with bipolar 1 disorder. This is everything I was taught following diagnosis (hospitalization, inpatient facility and one relapse of both, psych rehab and lots of therapy). Hope it helps. Find positive supports. These are people you would ask for help from that can include anyone you feel safe with like a family member, friend, mental health professional, spiritual advisor or sponsor. Make a list and update it continually. Reach out when you need to. Know it’s okay to ask for help. On Disclosing: You may be afraid to share your mental health journey with another, but the more you learn to self-advocate, the less fear you will have. That’s stigma talking. That’s not anything you did wrong. Come up with a plan for how much you want to share. There are support groups out there if you need help opening up. It’s your choice ultimately who you tell and how much you let them know. Tell when you’re ready. Make sure you are able to express yourself honestly with the people you choose. It’s normal to be afraid of authentically being, but in order to heal, you must be open to it. Come up with a Relapse Prevention Plan. List your diagnosis such as bipolar, depression, anxiety or anything else that fits. List three symptoms you experience of your mental illness such as panic attacks, rumination or distress. List triggers that could cause you to relapse and create stress putting you in a crisis. A trigger can be a subject matter that upsets you. For example, if you have anxiety or stress, putting yourself in a high stress environment might not be best. Or if you have depression, listening to sad music might trigger you. Create a trigger avoidance plan - what can you do to avoid the known triggers you have, what are current triggers in your life? You might avoid certain people or situations to reduce chances of triggers. List three coping skills that you can do when at risk for being triggered. For example, you can meditate, journal or watch a movie that you love. Now, you can list your positive supports. These can be friends or family that you trust. It can also be a mental health professional such as your psychiatrist or therapist. You might be in a support group which can also be listed. What will you do if you find yourself relapsing? Come up with who you will call, what self-soothing coping skills will you try and where you will go and what you will do. For example, if you are depressed and having suicidal feelings, you might tell your therapist or call a hotline. Answer these, and you have your plan! Maintain your mental health. What are you like when you are well? List ways you can know or someone else can know you are doing well. What triggers affect your ability to handle things? List some warning signs that others can know so they can help. Ask them if they are comfortable intervening and come up with a plan for how you would want that to happen. Find the motivation. When you are struggling, you may not feel motivated to do anything about it. Viktor Frankl, holocaust survivor and author of Man’s Search for Meaning, said “Those who have a ‘why’ to live, can bear with almost any ‘how’.” What is your Why? Then, in order to get what we have never had, we must do what we’ve never done. Change your routine. Use positive supports to help you make that change and to help you feel supported. Lastly, reward yourself. Even if you just tell yourself “good job” and acknowledge what you’ve done, you’ve found the motivation. Set Up for Set Backs. Know setbacks are going to happen. That’s part of life. Learn to self soothe your stress through a relaxation technique of your choice. You can meditate, do yoga, journal, listen to relaxing music, etc. Your inner critic may be its loudest at this moment. Learn to give compassionate attention to yourself. Don’t give up, and don’t panic. Try to find the source of what caused the setback and try to fix what you can. Learn how to prevent it for the future. Take care of yourself so you can take care of others. Don’t spread yourself too thin. Plan for imperfections. Have Boundaries. A boundary is a limitation of what you will accept. Do whatever makes you feel safe. Your sanity is worth it. This is about self-respect. A boundary should be easy to understand and enforceable. In a healthy relationship, you will be listened to, heard and understood for your boundary. More than anything, you will be respect. If we communicate clearly and not with anger, we are more likely to be understood. Make sure to follow through on enforcement of your boundaries, even if you feel uncomfortable at first having them. Create a self-esteem inventory. List positive attributes you have. Come back to this list when your inner critic starts to list flaws. You don’t have to be flawless, you just may need a better perspective. This list will help you feel better about yourself. Stay Positive. Put things into perspective. Will it matter five years from now? Then don’t waste five minutes on it. There will be things that DO matter more, but discerning between what does and doesn’t is the point. Prioritize. Accept what is so you can make the necessary changes. Don’t do the “Shoulda, Coulda” game with yourself. Seek lessons from everything, and this will help you tune out the temptation to beat yourself up. Remember, there is no such thing as failure, it’s an investment in learning. Resolve not to ruminate. This is when you dwell on a problem and get stuck in a loop causing distress. You start to ask “Why me?” questions when you should be remembering your “Why” (see number 5). Instead, resolve the problem by brainstorming solutions and taking action. Rumination can happen to any of us, and if you find yourself having trouble, come back to this resource. Create a timeline of your life. Do this with dates and ages. Include your first memory, general memories throughout life and pick out good or bad life events which shaped you. The benefits: You will see how you’ve been resilient all along. This will foster more resilience in you and drive. Problem Solving. List your problems, factors contributing to your problems and your goals for solving them. Brainstorm lists of possible solutions. Create a Pros and Cons list for your top few solutions chosen. Lastly, create action steps once you decide on one or two solutions. Attach it to a timeline. Did it work? Why or why not? You can come back to this exercise anytime.“Fear melts when you take action toward a goal you really want.” – Robert G. Allen To Do Lists. Date your to-do list, write out your to-do list items and then prioritize your list by marketing each item A, B or C in order of importance. A = must do today, very important. B = need to do but not necessarily today. C = can wait until you have some free time. Place a number next to each item according to urgency within a lettered group. Ask “How time sensitive is it?” Number 1 is most important. So the letters indicate importance, but the numbers indicate both urgency and sequence. That way you order the list each day that you do it by urgency and importance. Then, you can prioritize tasks and this will lead to greater task management. Socratic Questions. Challenging your negative self-talk is important in recovery and preventing relapse. Answer the following questions: What is the thought to be questioned? What is the evidence for this thought? Against it? Am I basing this thought on facts, or on feelings? Is this thought more black and white, when reality is more complicated? Could I be misinterpreting the evidence? Am I making any assumptions? Would other people have different interpretations of the same situation? What are they? Am I looking at the evidence of just what supports my thoughts? Could be thought be an exaggeration of what is true? Am I having this thought out of habit or do the facts support it? Did someone pass this thought/belief on to me? If so, are they a reliable source? Is my thought a likely scenario or is it the worst case scenario? This is essentially Cognitive Behavioral Therapy. You are analyzing a thought and finding its source and evaluating the reliability. You are retraining your brain how to think. The ten forms of cognitive distortions. Does your thinking fit in any category? This will help you know if you are having an irrational thought without evidence or if your negative self-talk is reflecting a cognitive disorder. Labeling these negative thought patterns helps you to cope, get resources, note triggers and ask for help. Recognition prevents relapse. Remember- you are not your thoughts. Mindfully become an observer to your thoughts and decide which thought patterns of yours are following: Containment Exercise. This is a meditation you can use anytime. Get into a comfortable position. Visualize a container. It can look and feel however you’d like. Go into as much detail as possible. What is the color, shape and size? Give your container a name. Now, put all your negative thoughts and feelings - anything bothering you - into this container. These can be worries, stressors, fear and your inner critic. For example, if you are ruminating on a worry that you will fail a test, you can put that worry in the container because you’ve already prepared enough. Or if you are thinking you’re unworthy and alone, you can put this thought in a container and separate yourself from it. Take a moment to do that. Then, put your container in a safe place. You can bury it, toss it in the ocean, lock it in a safe, anything you choose. The key is to separate yourself from the negative thoughts and feelings. This is so you do not overidentify with the emotion. You are not “Sadness” itself, you are “feeling sad.” There is a difference. It is all temporary - feelings are not facts, and you do not have to deal with them at all times. It’s okay to give yourself a rest. This may aid in some clarity. Worry Scheduling: Along with the containment exercise, you can decide to schedule time to worry in your day and week. The time you worry is called a “worry window.” The point of this is to give your mind a break to focus on other things. Then, during the worry window, worry journal for 20 minutes anything that you are worried about. Lastly, come up with solutions to them. That way, you can better cope and manage your worries without them overtaking you. Grounding. If you are having a difficult emotion or thought come up, ground yourself into the present by focusing on your senses. Think of what you can see, smell, taste, hear and touch. Go into as much detail as possible. Breathe deeply and focus on breath. If you need more stimulation, focus on another object and another and another until you are at peace again. Be with this moment, practice some Mindfulness. The present is all that needs attention. Come to this when you are in emotional distress… Know that no matter what you are going through, you are not alone. Keep this resource handy, so you can reference it when you are seeking resilience in your recovery. Here are some other mental health resources to educate yourself and become involved as a mental health advocate: Mental Health America National Association of Behavior Healthcare American Psychiatric Association Substance Abuse and Mental Health Services Administration National Alliance on Mental Illness American Psychological Association
How Mental Health Advocacy Is Important To All By Sarah Jeanne Browne
All or Nothing Thinking - you see things in black or white Overgeneralizations - you see a single negative event and say “always or never” about this as a pattern. Mental Filter - you pick out a single negative detail and dwell on it exclusively so it is perceived as all of reality. Discounting the Positive - Reject positive experiences by insisting they “don’t count.” Jumping to Conclusions: You interpret things negatively when there are no facts to support your conclusion i.e. mind repeating or fortune telling thinking all is negative. Magnification - Exaggerate the importance of your problems and shortcomings Emotional reasoning- You assume that your negative emotions necessarily reflect the way things really are. “Should Statements” - You tell yourself how things SHOULD be rather than seeing the positive of how they are. Labeling - Extreme form of all-or-nothing thinking. Instead of saying “I made a mistake” you attach a negative label like “I’m a loser.” Personalization and Blame. You hold yourself accountable for an event that isn’t entirely under your control.
About the author: Sarah Jeanne Browne is a speaker, writer, and activist. She is a self help writer who has been published on Forbes, Lifehack, Tiny Buddha, Thrive Global, Elephant Journal, and more. She has led workshops for youth on leadership for The Peal Center, Pennsylvania Youth Leadership Network, and The Woodlands Foundation. Sarah is a “lived experience” speaker and writer with bipolar who fosters better understanding of mental health to end stigma. Sarah promotes how to surrender or let go as her philosophy in all her writing- self help for sites, books, or otherwise. Her website is www.sarahjeannebrowne.com. You can also find her on twitter @sarahjbrowne and facebook@sarahjsocialjustice. Source: Raise Center Blog
Alcohol Awareness Month - Alcohol Awareness Month is a public health program organized by the National Council on Alcoholism and Drug Dependence as a way of increasing outreach and education regarding the dangers of alcoholism and issues related to alcohol. Irritable Bowel Syndrome (IBS) Awareness Month National Autism Acceptance Month National Child Abuse Prevention Month National Donate Life Month National Facial Protection Month National Minority Health Month National Sarcoidosis Awareness Month - Sarcoidosis (pronounced SAR-COY-DOE-SIS) is an inflammatory disease characterized by the formation of granulomas tiny clumps of inflammatory cells in one or more organs of the body. Occupational Therapy Month Oral Cancer Awareness Month Sexual Assault Awareness and Prevention Month - Every 68 seconds, an American is sexually assaulted. And every 9 minutes, that victim is a child. Sexual Assault Awareness Month STD Awareness Month National Minority Cancer Awareness Month National Public Health Week (April 3–9) Rape, Abuse and Incest National Network Day (April 5) World Health Day (April 7) April 2023 - World Health Day the World Health Organization will observe its 75th anniversary. National Youth HIV/AIDS Awareness Day (April 10) Every Kid Healthy Week (April 24–28) World Meningitis Day (April 24) World Immunization Week (April 24–30) National Infant Immunization Week (April 26–May 3)
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awareness Calendar
National Donate Life Month – April National Donate Life Month (NDLM) features an entire month of activities to help encourage Americans to register as organ, eye and tissue donors and to honor those that have saved lives through the gift of donation. Important Organ Donation Awareness Days Donate Life Living Donor Day April 5, 2023 Blue & Green Spirit Week starts April 8, 2023 National Donate Life Month Blue & Green Day Friday, April 14, 2023 National Pediatric Transplant Week April 23-29, 2023 National Minority Health Month - April 2022 OMH is proud to announce the theme for National Minority Health Month 2023: Better Health Through Better Understanding. This year’s theme focuses on improving health outcomes for racial and ethnic minority and AI/AN communities by providing them with culturally and linguistically competent healthcare services, information, and resources. When patients are provided with culturally and linguistically appropriate information, they are empowered to create healthier outcomes for themselves and their communities.
April is National Autism Acceptance Month and April 2, 2023, is the sixteenth annual World Autism Day. Autism Acceptance Month is an event that promotes the inclusion and acceptance of people diagnosed with Autism Spectrum Disorder (ASD). Every year, this month-long celebration aims to break the stigma of people living with autism. During the month, workshops and events educate professionals on how best to support people on the autistic spectrum, from school support to health care and housing. Sponsored by the Autism Society of America, Autism Acceptance Month seeks to shift the narrative from “awareness to acceptance,” to help autistic people feel supported throughout their lives. World Autism Awareness Day is observed on April 2. “World Autism Awareness Day (WAAD)” is observed globally on April 2 every year. Sponsored by the UN Department of Global Communications and the Department of Economic and Social Affairs, (along with other organizations), the campaign aims to put a spotlight on the hurdles that people living with autism, especially children with autism, face every day. The campaign also hopes to spread worldwide knowledge about autism and deliver information on how important an early diagnosis is.
May is Cystic fibrosis awareness month. Cystic fibrosis is a genetic disorder that affects the lungs, pancreas, and other organs. Every May, the cystic fibrosis community comes together for CF Awareness Month. Close to 40,000 people in the U.S. have cystic fibrosis. The majority of people with CF are diagnosed by age 2 thanks to newborn screening tests. If you have CF or are considering testing for it, knowing about the role of genetics in CF can help you make decisions about your healthcare.
National Hurricane Preparedness Week is April 30-May 6, 2023. Be ready for hurricane season. Take action TODAY to be better prepared for when the worst happens. Understand your risk from hurricanes, and begin pre-season preparations now. Make sure you understand how to interpret forecasts and alerts, and know what to do before, during, and after a storm. If you live in hurricane-prone areas, you are encouraged to prepare before hurricane season begins on June 1.
May is Mental Health Month! Nearly 1 in 5 American adults will have a diagnosable mental health condition in any given year. 46 percent of Americans will meet the criteria for a diagnosable mental health condition sometime in their life, and half of those people will develop conditions by the age of 14. MHA's 2023 Mental Health Month campaign is focused on how surroundings impact mental health, and are calling for individuals to look around, look within. Topics specifically address include: Safe and Stable Housing; Healthy Home Environments; Neighborhoods and Towns; The Outdoors and Nature. MHA wants to help people understand how these topics impact mental health and are providing tips for actions people can take to change their surroundings in favor of their well-being, and suggestions for how to cope if change isn’t realistic.
American Stroke Awareness Month Arthritis Awareness Month Better Hearing and Speech Month 2023 Each May, Better Hearing & Speech Month (BHSM) provides an opportunity to raise awareness about communication disorders and the role of ASHA members in providing life-altering treatment. For 2023, the theme is “Building a Strong Foundation.” Clean Air Month Cystic Fibrosis Awareness Month - Cystic fibrosis is a progressive, genetic disease that causes persistent lung infections and limits the ability to breathe over time. Food Allergy Action Month Healthy Vision Month - May is Healthy Vision Month: You can have a comprehensive dilated eye exam to check for common eye problems. If you haven’t had an exam in a while, schedule one now. Hepatitis Awareness Month Lupus Awareness Month Melanoma/Skin Cancer Detection and Prevention Month National Asthma and Allergy Awareness Month National Celiac Disease Awareness Month National High Blood Pressure Education Month National Osteoporosis Awareness and Prevention Month National Physical Fitness and Sports Month National Teen Pregnancy Prevention Month National Hurricane Preparedness Week (April 30-May 6) National Neuropathy Awareness Week (May 1–8) World Hand Hygiene Day (May 5) - Wash your hands! National Prevention Week - (May 7-13) NPW is a national public education platform showcasing the work of communities and organizations across the country dedicated to raising awareness about the importance of substance use prevention and positive mental health. Cornelia de Lange Syndrome Awareness Day (May 9) National Women’s Health Week (May 14-20) National Stuttering Awareness Week (May 8–13) Food Allergy Awareness Week (May 14–20) National Alcohol and Other Drug-Related Birth Defects Awareness Week (May 13–19) HIV Vaccine Awareness Day (May 18) National Asian and Pacific Islander HIV/AIDS Awareness Day (May 19) World Autoimmune Arthritis Day (May 20)
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Alzheimer’s and Brain Awareness Month - observed in June as an opportunity to spread the word about and discuss Alzheimer’s disease and other dementias. Throughout the month, the Alzheimer’s Association encourages people around the globe to support the movement by wearing purple and training their brains to fight the disease. National Aphasia Awareness Month - Aphasia is an acquired communication disorder that impairs a person's ability to process language, but does not affect intelligence. Aphasia impairs the ability to speak and understand others. Cataract Awareness Month - Cataract is one of the leading causes of blindness in the United States. If not treated, cataracts can lead to blindness. In addition, the longer cataracts are left untreated, the more difficult it can be to successfully remove the cataract and restore vision. During Cataract Awareness Month in June, the American Academy of Ophthalmology reminds the public that early detection and treatment of cataracts is critical to preserving sight. Hernia Awareness Month Men’s Health Month Myasthenia Gravis Awareness Month - Myasthenia gravis (pronounced My-as-theen-ee-a grav-us) comes from the Greek and Latin words meaning "grave muscular weakness." The most common form of MG is a chronic autoimmune neuromuscular disorder that is characterized by fluctuating weakness of the voluntary muscle groups. National Congenital Cytomegalovirus Awareness Month - CMV is the most common infectious cause of birth defects in the United States. About 1 out of 5 babies with congenital CMV infection will have birth defects or other long-term health problems, such as hearing loss. National Safety Month - Join the National Safety Council in June for National Safety Month—the annual observance to help keep each other safe from the workplace to anyplace. For more than 25 years, NSM has provided weekly resources to highlight leading causes of preventable injury and death so people can live their fullest lives. National Scleroderma Awareness Month Scoliosis Awareness Month - Scoliosis is a sideways curvature of the spine that most often is diagnosed in adolescents. While scoliosis can occur in people with conditions such as cerebral palsy and muscular dystrophy, the cause of most childhood scoliosis is unknown. National Cancer Survivors Day - (June 4) Men’s Health Week - (June 12–18) Family Health and Fitness Day - (June 11) World Sickle Cell Day - (June 19) PTSD Awareness Day - (June 27) Deaf-Blind Awareness Week - (June 25th to July 1, 2023 This week is marked annually during the last week of June in honor of leading humanitarian Helen Keller’s birthday on June 27. Being deaf and blind herself, Keller’s work made a big difference in the lives of deafblind people. The term deaf-blindness refers to a combination of visual and auditory impairments and is much more common than many people realize. Over 15 million people worldwide are estimated to be living with severe deafblindness. So, besides commemorating Kellen’s accomplishments, this week is a chance for us to raise awareness of the condition and make the world a more deafblind-friendly place.
June is Post Traumatic Stress Awareness Month - Post-traumatic stress disorder (PTSD) is a disorder that develops in some people who have experienced a shocking, scary, or dangerous event. According to the National Center for PTSD about six percent of the population will have PTSD at some point in their lives and about 12 million adults in the United States have PTSD during a given year. Additionally, the number of Veterans with PTSD varies by service era. Approximately 11-20 out of every 100 Veterans who served in Operation Iraqi Freedom or Operation Enduring Freedom have PTSD and in any given year, about 12 out of every 100 Gulf War veterans have had PTSD. It is estimated that about 30 out of every 100 Vietnam Veterans have had PTSD in their lifetime.
Tips for Individuals with Alzheimer’s and Related Dementia Do not leave the person alone. Even those who aren’t prone to wandering away may do so in unfamiliar environments or situations. If evacuating, help manage the change in environment by bringing a pillow and blanket or other comforting items they can hold onto. When at a shelter, try to stay away from exits and choose a quiet corner. If there is an episode of agitation, respond to the emotions being expressed. For example, say “You’re frightened and want to go home. It’s ok. I’m right here with you.”
Source: Ready.gov
Tips for Medications Talk to your doctor or pharmacist about how you can create an emergency supply of medicines. Keep a list of your prescription medicines. Include information about your diagnosis, dosage, frequency, medical supply needs and allergies. Store extra nonprescription drugs, like pain and fever relievers, antihistamines and antidiarrheal medicines. Have a cooler and chemical ice packs available to chill medicines that need to be refrigerated.
Tips for People with Speech Disability If you use an augmentative communications device or other assistive technologies plan how you will evacuate with the devices or how you will replace equipment if it is lost or destroyed. Keep model information and note where the equipment came from (Medicaid, Medicare, private insurance, etc.). Plan how you will communicate with others if your equipment is not working, including laminated cards with phrases and/or pictogram.
Individuals with Intellectual or Developmental Disabilities Keep handheld electronic devices charged and loaded with videos and activities. Purchase spare chargers for electronic devices and keep them charged. Include sheets and twine or a small pop-up tent (to decrease visual stimulation in a busy room or to provide instant privacy). Consider a pair of noise-canceling headphones to decrease auditory stimuli. Have comfort snacks available.
Tips for People with a Mobility Disability If you use a power wheelchair have a lightweight manual chair available as a backup if possible. Show others how to assemble, disassemble and operate your wheelchair. Purchase an extra battery for a power wheelchair or other battery-operated medical or assistive technology devices. If you can't purchase an extra battery, find out what agencies, organizations or local charitable groups can help you buy one. Keep extra batteries charged at all times. Consider keeping a patch kit or can of sealant for flat tires and/or extra inner tube if wheelchair or scooter is not puncture proof. Keep an extra mobility device such as a cane or walker if you use one. Keep a portable air pump for wheelchair tires. If you use a seat cushion to protect your skin or maintain your balance and you must evacuate, consider keeping an extra cushion on hand. Communicate with neighbors who can assist you if you need to evacuate the building.
Additional Items Several days supply of prescription medicines A list of all medications, dosage and any allergies Extra eyeglasses, contacts, hearing aids and batteries A backup supply of oxygen A list of the style and serial number of medical devices (include special instructions for operating your equipment if needed) Copies of insurance and Medicare cards Contact information for doctors, relatives or friends who should be notified if you are hurt Pet food, extra water, collar with ID tag, medical records and other supplies for your service or support animal.
Tips for People Who are Deaf or Hard of Hearing Weather radio (with text display and a flashing alert) Extra hearing-aid batteries Pen and paper (in case you have to communicate with someone who does not know sign language) Battery operated lantern to enable communication by sign language or lip reading, especially when the electricity is out and it’s dark.
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Tips for People Who are Blind or Have Low Vision Mark emergency supplies with Braille labels or large print. Keep a list of your emergency supplies and where you bought them on a portable flash drive or make an audio file that is kept in a safe place where you can access it. Keep communication devices for your particular needs, such as a Braille or deaf-blind communications device as part of your emergency supply kit.
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.
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.
700 Hickory Avenue Harahan, LA 70123 504-888-9111 800-766-7736 504-353-2350 fax info@fhfofgno.org fhfofgno.org