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MISSION The Mission of Families Helping Families of Greater New Orleans is to educate and connect children and adults with disabilities, and their families to resources, services, and supports to attend school, work, and thrive in their communities.
BOARD OF DIRECTORS Board Chair Jo Ann D. LoRusso, Ph.D Vice Chair Debra Dixon M.Ed. Treasurer Shantia White Secretary Reynecia Ricks, MSN, RN Board of Directors Katie Furtado Wilbert Johnson Kristine K. Johnstone
FHF of GNO's TEAM Executive Director Laura S. Nata lsnata@fhfofgno.org Ext. 2009 Director, Education and Support Karen Scallan kscallan@fhfofgno.org Ext. 2004 Public Relations Manager Kristine Dauzat kdauzat@fhfofgno.org Ext. 2008 Administrative Assistant Liz Dumas ldumas@fhfofgno.org Ext. 2002 Programs Coordinator Maryury Templet mtemplet@fhfofgno.org Ext. 2006 Peer Support, Youth & Transition Specialist Steven Nguyen snguyen@fhfofgno.org Ext. 2012 Peer Support Specialist Heather Wilson hwilson@fhfofgno.org Ext. 2018 Intake & Outreach Specialist Jamie Nata jnata@fhfofgno.org Ext. 2026
700 Hickory Avenue Harahan, LA 70123 504.888.9111 | 800.766.7736 info@fhfofgno.org | fhfofgno.org
Join FHF of GNO's Board of Directors p.36 Every Voice Creates Change p.37 Why Should I Become a Self-Advocate p.39 Stay Connected With FHF of GNO p.40
“Every note tells a story of courage, resilience, and joy.”
Celebrating Leadership p.04 From Passion to Leadership: Celebrating 27 Years and My First Year as ED p.05 FHFofGNO and LAPTIC in Action p.08 SUN Surveys: What are They and Why Do We Need Them? p.09 Advocacy Begins With Us p.14 A Neurodivergent Parent's Journey to Advocacy p.16 "Ready, Set, Go" p.18 The Rhythm of Resilience p.20 Building a World for Everyone p.23 June/July Awareness Calendar p.25 Free Webinars p.26 Social Security Updates p.27 Youth Virtual Hangout p.28 Independent Futures That Work p.29 Jefferson Parish Human Service Authority p.30 Louisiana Council's Advocacy Network p.31 The Disability Assessment & Coordination Entity p.32 Be Ready Before an Emergency: How to Prepare a Go Bag p.33 Family to Family Health Information Center p.35
CONTENTS
One year ago in May, I stepped into the next chapter of my journey as Executive Director at Families Helping Families of GNO. I came to the role with a blend of nervous excitement and a fierce dedication to our mission. Having spent the previous 26 years serving FHF in nearly every capacity, I had a clear vision of what our community required and the milestones we needed to reach. My first priority was assembling a dynamic leadership team to help drive our goals forward. I found exactly what we needed in Karen Scallan, as Director of Education and Support, and Kristine Dauzat, as our Public Relations Manager. Together, we hit the ground running. As I complete my first 365 days and celebrate 27 years with FHF this May, I’ve been reflecting on everything we’ve built so far. Looking back, my respect for this organization, our community, and the incredible people who make our work possible has only deepened. We’ve accomplished more in these 12 months than we could have imagined, and I am incredibly proud of what we stand for. Funding & Strategic Growth Secured Our Future:Successfully closed out our 2020-2025 Parent Training and Information Center (LaPTIC) grant and officially launched our new 5-year grant period. Expanded Partnerships:Renewed theIndependent Futures that Workvocational rehabilitation contract, a regional collaboration spearheaded by the Alabama PTI. Financial Success:Broke our all-time donation record for Give NOLA Day and hosted a highly successful initial Annual Golf Tournament Fundraiser. Audit Success:Passed all routine contract audits with flying colors! Community Events & Outreach Family Fun:Initiated the highly anticipated 1st Annual Jefferson Parish Family Fun Day and co-hosted the first JPHSA Resource Fair. Expanded Training:Brought vital new training topics, such as Elopement Prevention and Financial Assistance Programs, to families of individuals with developmental disabilities. Empowering Youth:Partnered with COPAA and CADRE to bring extensive advocacy training to Louisiana parents and youth. Operational Excellence & Team Updates Promotions:Promoted Maryury Templet from Peer-Support Staff to Program Manager. Team Development:Recruited new Board members, arranged comprehensive Board trainings, and began cross-training all staff to ensure seamless community services. Better Data:Implemented new data processes to make stronger program decisions based on your feedback. Informed Advocates:Increased internal staff training on Medicaid/Waiver topics so we can better assist you. Accessible Resources & Community Voice Website Updates:Made great strides in achieving full ADA compliance for our website. Refreshed Webinars:Rolled out a fresh, new look for our webinars and are continuously updating them based on your input. Re-instituted Stakeholder Committee:Brought together individuals with disabilities and their caretakers. Your unique perspectives help us fine-tune our services to best meet the needs of families in Louisiana. This year was all about building a foundation for growth, and we couldn't be prouder of our talented team. Our leadership is driven by a shared mission: to grow our organization while supporting the personal development of every staff member. Thank you to our staff, Board, funders, partners, and our incredible community. Seeing you reach your goals gives us the energy to keep pushing forward! As proud as we are of what we've built, we know this organization belongs to the community. We are merely entrusted with the safekeeping of this organization. We are just the stewards entrusted with keeping it moving in the right direction. We can't wait to continue this journey together, turning challenges into opportunities and creating meaningful impact in our community. Here’s to another great year of growth and success!
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By Laura S. Nata, Executive Director
One year ago in May, I stepped into the next chapter of my journey as Executive Director at Families Helping Families of GNO. I came to the role with a blend of nervous excitement and a fierce dedication to our mission. Having spent the previous 26 years serving FHF in nearly every capacity, I had a clear vision of what our community required and the milestones we needed to reach. My priority was assembling a dynamic leadership team to help drive our goals forward. I found exactly what we needed in Karen Scallan, as Director of Education and Support, and Kristine Dauzat, as our Public Relations Manager. Together, we hit the ground running. As I completed my first 365 days and celebrated 27 years with FHF this May, I’ve been reflecting on everything we’ve built so far. Looking back, my respect for this organization, our community, and the incredible people who make our work possible has only deepened. We’ve accomplished more in these 12 months than we could have imagined, and I am incredibly proud of what we stand for. Funding & Strategic Growth We secured three new partnerships to expand our impact and services to enhance our ability to support and assist the community. Those contracts include: Louisiana Rehabilitation Services, Pre-ETS services for the greater New Orleans area, 16 and older. We have 3 employees who work with LRS, parish schools, and various employers to help students find success in employment. Disability Access Solutions’ DACE Program contract. Access to support and services for individuals in the aftermath of a disaster is vitally important in our state. Three individuals in our office have been trained to go into shelters in the event of a large-scale emergency to assist individuals with disabilities in finding support for their access and functional needs. We also participate in training exercises and other collaborations throughout the year on emergency preparedness. Louisiana Developmental Disabilities Council provides funding for us to assist individuals with developmental disabilities in our region, as well as help support the vital work of LaCAN in improving systems for people with developmental disabilities. Secured Our Future: Successfully closed out our 2020-2025 Parent Training and Information Center (LaPTIC) grant and officially launched our new 5-year grant period. Expanded Partnerships: Renewed the Independent Futures that Work vocational rehabilitation contract, a regional collaboration spearheaded by the Alabama PTI. Financial Success: Broke our all-time donation record for Give NOLA Day and hosted a highly successful initial Annual Golf Tournament Fundraiser. Audit Success: Passed all routine contract audits with flying colors! Community Events & Outreach Family Fun Day: Initiated the highly anticipated 1st Annual Jefferson Parish Family Fun Day and co-hosted the first Jefferson Parish Community Resource Fair at Lakeside Shopping Center. Expanded Training: Brought vital new training topics, such as Elopement Prevention and Financial Assistance Programs, to families of individuals with developmental disabilities. Empowering Youth and Families: Partnered with COPAA and CADRE to bring extensive advocacy training to Louisiana parents and youth. Operational Excellence & Team Updates Promotions: Promoted Maryury Templet from Peer-Support Staff to Program Manager. Team Development: Recruited new Board members, arranged comprehensive Board trainings, and began cross-training all staff to ensure seamless community services. Better Data: Implemented new data processes to make stronger program decisions based on your feedback. Informed Advocates: Increased internal staff training on Medicaid/Waiver topics, so we can better assist you. Accessible Resources & Community Voice Website Updates: Made great strides in achieving ADA compliance for our website. Refreshed Webinars: Rolled out a fresh, new look for our webinars and are continuously updating them based on your input. Re-instituted Stakeholder Committee: Brought together individuals with disabilities and their caretakers. Your unique perspectives help us fine-tune our services to best meet the needs of families in Louisiana. This year was all about building a foundation for growth, and we couldn’t be prouder of our talented team. Our leadership is driven by a shared mission: to grow our organization while supporting the personal development of every staff member. Thank you to our staff, Board, funders, partners, and our incredible community. Seeing you reach your goals gives us the energy to keep pushing forward! As proud as we are of what we built, we know the organization belongs to the community. We are merely entrusted with the safekeeping. We are just the stewards charged with keeping it moving in the right direction. We can't wait to continue this journey together, turning challenges into opportunities and creating meaningful impact in our community. Here’s to another great year of growth and success! With Gratitude, Laura S. Nata Executive Director Training Events – Access Our Training Calendar on our Website Monthly webinar schedule @ https://fhfofgno.org/training-calendar 20 minute webinars https://fhfofgno.org/training-calendar/mini-trainings Recorded webinars in Spanish https://fhfofgno.org/training-calendar/spanish-trainings Recorded webinar in English https://fhfofgno.org/training-calendar/archived-trainings Families Helping Families of GNO/youtube https://www.youtube.com/@familieshelpingfamiliesofgno/videos
From Passion to Leadership: Celebrating 27 Years and My First Year as ED
If you have a developmental disability or a child with one, you likely have heard of the SUN Survey. You also probably have heard some misinformation about it as well. I’m hoping to clear up some of that misinformation with this article. Children and adults approved for developmental disability services through the State of Louisiana must go through a SUN Survey to determine how urgently they need the specific Medicaid waiver services. A Medicaid Waiver provides all the “regular” Medicaid health, dental, and mental health services, plus an extra budget for services called the “Medicaid Waiver services.” These are services Medicaid does not normally cover for most of the Medicaid population. Primarily, waiver services are either home modifications or help with caregiving for children or adults, and can include things like day habilitation facilities, too. Learn more about what each waiver provides by visiting the links at the end of the article. What is a SUN Survey? Individuals who apply for developmental disability services and meet state criteria receive a “Statement of Approval” or SOA letter and are placed on the Request for Services Registry (“RFSR). SUN stands for Survey of Urgency of Need, and once on the registry, the SUN Survey team is notified to call the individual for an appointment to conduct the Survey. This should take about 2 weeks. The survey itself doesn’t take long at all to complete. You are asked questions about how urgently the family needs the services of a waiver, not “regular” Medicaid services. It is important to remember that this survey is less about the severity of your child’s disability or diagnosis and more about what help you need at that particular moment in time. The scale that is used is as follows: 4 = Emergent (needs service immediately within 90 days); 3 =Urgent (needs services within 3-12 months; temporary support may be in place but is not sustainable beyond 12 months); 2 = Critical (need supports within 1-2 years or 13-24 months); 1 = Planning (anticipate a change in the future, but the need is 2-5 years away or 25-60 months); and 0 = None of the Above (need is more than 5 years away; or need cannot be met with waiver; default choice is no unmet need is identified or anticipated in the future). See https://ldh.la.gov/page/1731 The most important thing to remember about the SUN survey is that your score is not a permanent number! Life changes, so the tiered waiver process was developed to meet needs as they arise. If you scored a lower number on your original survey, and you have an event that changes your situation (for example, a child losing a grandparent who was the main caregiver while their parents’ work, or a child is at an age to begin working on transition to adulthood), then call your Human Service District or Authority as soon as possible and request a new SUN Survey. What if I disagree with the score? You also have rights where the survey is concerned. If you disagree with your survey score, first, contact OCDD and ask to speak to the SUN Survey team regarding the score. They may have interpreted the information you provided incorrectly, and you may be able to have the survey redone. If you still disagree with the score, you do have a right to appeal. Appeals are made through the Louisiana Division of Administration and are based on whether the Department followed its procedures and criteria. When you get your letter confirming your SUN Score, appeal information will be included. Either way, you still retain your ability to request a new SUN score at a later date if and when your circumstances change. Why are we using a SUN Survey? The SUN is part of Louisiana’s Tiered Waiver System that seeks to focus Medicaid dollars on individuals in urgent or emergency need for services. Before we had the Tiered Waiver System and SUN surveys, we were on a first-come, first-served basis for waiver offers. We had no idea how urgently anyone on the waiting list needed a waiver. We had people dying before they ever received any assistance, and others who just needed a ride to work, who were on full NOW waivers. That inequity created a poor use of State and federal funds, and it meant fewer people were served by the same Medicaid dollars. It also created an excruciatingly long waiting list. I believe our son waited 9 years, but there are others who waited as much as 12 or 13 years to get waiver services under the old first-come, first-served system. How did this all start? Individuals and families who needed services came together with OCDD and let it be known that the system wasn’t working. They asked for one comprehensive waiver system that would meet the needs of individuals. The creation of the tiered waiver system and the Sun survey were steps taken toward that eventual goal. One of the results of the tiered waiver system is that families also said that there needed to be a way for those who just needed Medicaid “regular” services to access Medicaid if the family was over the income threshold for eligibility. The state then turned to developing the Act 421/TEFRA program, so family income was not counted for “regular” Medicaid services if your child had a disability that met the Social Security disability definition and one of 3 level of care criteria. Self-direction was also implemented as families recognized that there are times when we were better able to manage the waiver services of our loved ones. That opened the door for individuals and families to be able to pay somewhat more than traditional provider agencies. There have been a lot of changes since those original statewide Stakeholder meetings. Many new families aren’t even aware of the work and history around all of this. At each turn, families were part of initiating the change, and families were part of the change design. One of those changes in our processes did come from higher up, though. Let’s talk about Personal Care Services next. Why do I have to apply for EPSDT-PCS or LT-PCS services, and what are they? One of the federal Medicaid rules is that any Medicaid Waiver developed by the State cannot be used to replace or supplant “regular” Medicaid services. Two services that Medicaid provides for all Medicaid recipients who meet criteria are Early Periodic Screening Diagnostic and Treatment – Personal Care Services and Long-Term Personal Care Services (EPSDT-PCS and LT-PCS, respectively). These 2 services are primarily the same except EPSDT-PCS is for children and LT-PCS is for adults. You may be asked to apply for one of the PCS services when you have the SUN survey or even before then. These services are very specific services that are directly linked to activities of daily living. The activities include specific things like bathing, dressing, feeding, light meal preparation, hygiene activities, etc. Through an assessment, they determine what activities you need help with and how long each should take. Then, you are approved for a specific number of hours per day to help with those tasks. You receive these services 7 days a week, and the hours cannot be banked or saved. For children, the PCS service does not include child supervision. This is in stark contrast to the waiver service that does provide caregiver supervision through a direct support worker. They can also provide assistance with working on goals toward independence, helping with homework, picking a child up from school, transporting them to doctor appointments, and much more. In order to be in compliance with federal rules, the state must ensure that they are not substituting waiver services for “regular” Medicaid services. It is important to apply for EPSDT-PCS or LTPCS services when asked to find out if you are approved and for how many hours. Once that is determined, and for example, if you receive 2 hours per day of EPSDT-PCS, your EPSDT-PCS hours are used first, and then your waiver hours. I highly recommend that when a family goes through eligibility with their regional Human Services District or Authority, they also apply for the personal care services as well. That way, that step will be out of the way. If you are denied, keep your denial paperwork so you can provide it to anyone who may need it for documentation at OCDD or the Human Services District. Remember, our state agencies and regional Human Service Districts/Authorities are monitored for compliance and have to produce documentation, too, when asked. As in anything, be sure to keep your Human Service District/Authority aware of your contact information and address if you have any changes. Always call and give them the new information, but follow up with an email and keep it in case you need it later. You can document phone discussions with follow-up emails as well. And, if you or someone you know has more questions about the SUN survey, applying for a Medicaid Waiver, or other Medicaid issues, a number of helpful links are provided below, and you can call our office at 504-888-9111. Families Helping Families of Greater New Orleans is here to support you as you navigate these complex systems. Children’s Choice Waiver https://ldh.la.gov/assets/docs/OCDD/waiver/CC/CCWaiverFactsheet051523.pdf Supports Waiver https://ldh.la.gov/assets/docs/OCDD/waiver/SW/SupportsWaiverFactSsheet051523.pdf Residential Options Waiver https://ldh.la.gov/assets/docs/OCDD/waiver/ROW/ROWFactSheet081525.pdf New Opportunities Waiver https://ldh.la.gov/assets/docs/OCDD/waiver/NOW/NOWFactSheet081525.pdf Long-term Personal Care Services https://ldh.la.gov/office-of-aging-and-adult-services/LTPCS EPSDT-PCS v. Home Health https://ldh.la.gov/assets/medicaid/SupportsAndWaivers/EPSDT-Support-Coordination- Handbook/2024/Appendix-G-EPSDT-PCS-vs-EHH-and-PCS-Rule-Information.pdf EPSDT-PCS v. Waiver Direct Support Services https://ldh.la.gov/assets/docs/earlysteps/cc_waiver/Chart_3.pdf
SUN Surveys: What are They and Why Do We Need Them?
By Karen Scallan
Advocacy Begins With Us
By Christina Martin, Regions 1/10 LaCAN Leader
Advocacy is more than speaking up. It is showing up, learning the issues, sharing our stories, and working together to create meaningful change for individuals with disabilities and their families. Through the Louisiana Council’s Advocacy Network, better known as LaCAN, families, self-advocates, and community members across our state are doing exactly that every single day. LaCAN’s mission is rooted in empowering people with disabilities and their families to have a voice in the policies and decisions that affect their lives. Whether we are advocating for Home and Community-Based Services, education rights, healthcare access, employment opportunities, or inclusive communities, our goal is simple: to ensure every person is valued, heard, and included. As Regions 1/10 LaCAN Leader, I have witnessed firsthand the power of grassroots advocacy. I have seen parents who once felt overwhelmed become confident advocates for their children. I have watched self-advocates courageously share their experiences with legislators and decision-makers. I have seen families come together, not only to support one another but to create lasting change that impacts future generations. Advocacy can sometimes feel intimidating, especially when navigating systems that are complex or difficult to understand. That is why LaCAN works to educate and equip individuals with the tools they need to participate effectively. Through legislative alerts, advocacy trainings, Yellow Shirt Days at the Capitol, local meetings, and direct communication with legislators, LaCAN helps transform passion into action. One of the most important things I have learned through advocacy is that personal stories matter. Facts are important, but real-life experiences are what truly connect people to the issues. When families and self-advocates share how policies impact their daily lives, it puts a human face on disability advocacy and reminds lawmakers why these conversations matter. Our work is not only about responding to challenges. It is also about building a future where individuals with disabilities have equal opportunities to thrive in schools, workplaces, and communities. Advocacy is about creating spaces where everyone belongs and where every voice has value. The truth is, change does not happen overnight, and it does not happen alone. It takes committed advocates willing to stay engaged, ask questions, and continue showing up even when progress feels slow. Every phone call, email, legislative visit, and shared story makes a difference. I encourage anyone passionate about disability rights and inclusion to become involved with LaCAN. You do not need to be an expert to advocate. You simply need the willingness to care, learn, and use your voice. Together, we can continue building stronger communities and a stronger Louisiana for all individuals with disabilities and their families. Because when we advocate together, our voices become impossible to ignore.
A Neurodivergent Parent’s Journey to Advocacy
My name is Nisha, and my journey into advocacy and support began through my experiences as a neurodivergent parent raising two autistic children. Navigating systems, therapies, schools, and everyday life opened my eyes to the importance of compassion, understanding, and creating spaces where autistic and disabled individuals are truly accepted for who they are. Through these experiences, I learned how powerful a strengths-based and trauma-informed approach can be for families. I became passionate about helping others feel seen, supported, and empowered while honoring each person’s unique identity, voice, and autonomy. My family’s journey has taught me that growth does not come from forcing people to fit into expectations, but from building environments rooted in flexibility, advocacy, acceptance, and community. One of the things I am most proud of is watching families and children flourish when they are met with understanding instead of judgment. Seeing caregivers, educators, and support teams come together with compassion creates a foundation where everyone can grow and thrive. The most effective approach for me has always been leading with curiosity and gentleness. Parenting and supporting neurodivergent individuals is not always linear, and there are rarely quick fixes. Resilience, openness, and a willingness to listen have been essential in navigating challenges and finding meaningful solutions together. To other families and caregivers, I want you to know that you are not alone. The journey can feel overwhelming at times, and it is normal to experience exhaustion, frustration, or uncertainty. Building a supportive community and finding people who truly understand can make all the difference. There is hope, there is growth, and there is strength in knowing that acceptance and understanding can lead to meaningful change for both families and individuals alike.
By Nishi Ranshi, Parent Advocate
The Beginning: A Beautiful Baby and Early Concerns In 2013, I gave birth to my son, Preston, eight pounds, nine ounces, twenty-one inches long. As a first-time mom, I was overwhelmed with excitement and love. He was perfect. Within his first year, Preston had frequent ear infections from daycare, causing ongoing illness. Although he met most developmental milestones, the infections hindered his hearing and significantly affected his speech. We made the decision to get tubes placed in his ears and started speech therapy through Early Steps shortly after. That combination changed everything. Slowly, he began to find his voice. And then came that moment on the swing: “Ready, set, go.” When Things Started to Change At 26 months old, Preston became a big brother. And soon after, everything shifted. We began seeing aggressive behaviors, phone calls from daycare became routine. I was constantly being told the same thing: “He just wants attention.” “You need to give him more attention.” “He needs more discipline.” But I knew something else was going on. I tried to explain that his behaviors were connected to his difficulty communicating. But no one wanted to hear that. Instead, he was labeled as the “big, strong kid” who was hurting others. He was sent home repeatedly. There were meltdowns, intense, overwhelming moments where he struggled to regulate his emotions. Sometimes he would hurt himself and others. Due to this, he was kicked out of three different daycare centers in a span of 6 months. Both my husband and I felt hopeless. Finally Being Heard Everything began to change when Preston started Pre-K at the school where I was teaching as a special educator. For the first time, we had people who truly saw him. His principal and counselor sat down with my husband and I and suggested we get him evaluated. We did and it was the best decision we could have made. When the results came back, ADHD and Autism, everything shifted again. At first, it was hard. There was a deep, quiet grief for the expectations we didn’t even realize we had been holding onto. But at the same time, there was relief because we finally had an explanation, we understood and had answers. The Power of the Right Support System With the right supports in place, Preston began to thrive. Medication helped him focus, but it was the educators who changed everything. They showed patience, kindness, and commitment. They supported him and our entire family. In second grade, as a mother, I felt as if we had a breakthrough moment. Preston received the Future President Award, an honor voted on by his peers. For the first time, his classmates saw what we had always seen: his leadership and potential. Today, Preston is thriving in middle school. He is fully included, plays sports, and serves as captain of his team. Through this, he has developed confidence, leadership, and strong social skills. What This Journey Taught Me This journey has been filled with challenges but also resilience, growth, and love. I have learned to advocate, persist, and never give up. Today, I am an Early Steps special instructor, a special education consultant, and a third year doctoral student at LSU specializing in Special Education. My research revolves around Mental Health of Caregivers of children with Autism. Because I know what it feels like to be unheard and I know how powerful it is when someone finally listens, I strive to be that ear for families that I serve. I also strive to be the voice for those families through my research and advocacy work. “Ready, Set, Go”—A Different Meaning Now That phrase means something different now. It represents a journey—one of strength, purpose, and hope. Sometimes, the smallest moments can change everything.
By Sarah Matthews, Parent Advocate
It started with a moment so small you could almost miss it. “Ready, set, go.” My son said it for the first time while sitting on a swing. Just a simple phrase, but for me, it was everything! It was hope, progress. and a glimpse of what was possible. But our journey to that moment, and everything that came after, was far from simple.
“Ready, Set, Go"
The Rhythm of Resilience
The Incredible Journey of Ahmad Fondal In the vibrant heart of Louisiana, where the music of the bayou meets the soul of New Orleans, a young man named Ahmad is proving that life’s most beautiful melodies often come from the most challenging beginnings. Born on October 17, 2013, Ahmad’s story is one of courage, unwavering support, and a natural-born talent that refuses to be quieted. Against All Odds: The Miracle at Children’s Hospital From his very first breath, Ahmad was a fighter, diagnosed at birth with right-sided diaphragmatic paralysis. However, his true test of spirit came in the winter of 2014. While battling Influenzaviruis A, Ahmad’s condition became so critical that he coded three times. During those dark hours at Children’s Hospital, the outlook was grim; many on his medical team feared he would not survive the night. Even as he pulled through, the road ahead seemed limited. His pulmonologist at the time predicted a life of physical restriction, doubting that Ahmad would ever have the lung capacity to run, play, or even "dribble a ball." But Ahmad is the definition of phenomenal. Not only did he survive, he thrived, proving that a medical prognosis is no match for a resilient spirit. A Scholar and a Fighter Ahmad’s journey hasn't just been a physical one; it has been an academic one as well. Due to his significant medical history and the time required for his recovery, he missed substantial time in the classroom. Today, he continues to navigate learning delays and a demanding schedule of Vision Therapy, Occupational Therapy, and Speech Therapy. What makes his progress even more remarkable is the coordination required for his care. Ahmad transitions from the Pediatric Health Day Center to the school environment, balancing his intensive therapy needs with his regular school classes. Despite these obstacles, Ahmad’s work ethic is unmatched. He strives every single day to give his best in his studies, showing that his mind is just as resilient as his body. Community and Culture: The Dumaine Street Connection Ahmad’s roots run deep in the cultural fabric of New Orleans. He is an active and proud member of his family’s Social and Pleasure Club, the Dumaine Street Ladies Auxiliary. Under the dedicated guidance of Patricia F, Ahmad is learning the importance of community, tradition, and the social bonds that hold the 6th Ward together. Patricia has been instrumental in mentoring Ahmad, helping him understand his place within this rich legacy. Whether he is representing his family at club events or learning the history of the streets he walks, Ahmad is a shining example of the next generation carrying the torch of New Orleans culture. Following in the Footsteps of a Legend Every great musician has a North Star, and for Ahmad, that light is the legendary New Orleans performer Trombone Shorty. As his idol and mentor-from-afar, Trombone Shorty’s influence is woven into every note Ahmad plays. Seeing a world-class musician excel on the trumpet, trombone, and drums provided Ahmad with a roadmap for his own musical identity. Inspired by Shorty’s versatility and stage presence, Ahmad felt encouraged to master those exact same instruments. Just like his idol, Ahmad is becoming a multi-instrumental force, proving that he can carry the weight of the brass and the rhythm of the percussion all at once. Finding His Voice Through the Horn Ahmad’s path to music actually began as a form of medicine. When he was just two years old, it was recommended that he play a wind instrument to help strengthen his lungs and build respiratory endurance. The First Note: Following his idol’s lead, he started with the trumpet, using his breath to create art while healing his body. The Evolution: He soon moved to the trombone, discovering a love for the slide and the deep, brassy tones that resonated with his spirit. What makes Ahmad’s talent truly extraordinary is his "ear." While many spend years pouring over sheet music, Ahmad plays by instinct and sound. He feels the music before he plays it, picking up melodies just like the greats who came before him. The Heartbeat of the Drumline While the brass instruments helped him breathe, the drums gave him his pulse. Ahmad’s percussion journey has seen him grow through some of the area's most respected programs: The Foundation: Ahmad initially developed his skills at Noble Minds, participating in their drumline with a focus on the cymbals. The Roots of Music: From 2022 to 2023, he was a member of the prestigious Roots of Music, where he further mastered the cymbals, contributing to the iconic New Orleans sound. A New Chapter with TMT: Moving forward in his musical evolution, Ahmad has recently joined TMT (The Master’s Touch Drumline). This new affiliation allows him to continue honing his craft with the high-energy precision that defines Louisiana's best drumlines. A Bright Future in LaPlace Today, at 12 years old, Ahmad is a standout student at John L. Ory Magnet Arts School in LaPlace. Recognized in the Talented and Gifted Music program, he continues to defy the odds. From the halls of the International School of Louisiana to the digital classrooms of LAVCA, Ahmad has navigated change with the same grace he uses to navigate a trombone slide. He has returned to St. John the Baptist Parish not just as a student, but as a local inspiration. Ahmad isn't just playing music; he is living it. Every beat of the drum and every blast of the trumpet is a celebration of how far he has come. Keep your ears open, with The Master’s Touch, the spirit of Trombone Shorty, and a heart full of resilience, Ahmad is just getting started.
A Young Musician With the Heart of the City
By Tomorow Fondal, Parent Advocate
By Michelle Beehari, Author
Most of our cities and offices were built on the assumption that everyone moves and thinks the same way. In North America, this often results in sprawling suburbs that are impossible to navigate without a vehicle. In Europe, accessibility is frequently limited by the preservation of history. Centuries-old cobblestone streets, narrow medieval doorways, and protected heritage buildings were all designed long before modern mobility standards existed. We now realize that we must update these spaces. This is not just for a small group of people, but because the system works better for everyone when it accounts for the reality of the human body. It is important to remember that disability is a standard part of being human. Whether it happens because of a sudden accident, a health condition, or simply the natural process of growing older, almost every one of us will experience some form of disability in our lifetime. Designing for diverse needs is an insurance policy for our own future. By making the world functional for everyone now, we ensure it stays functional for us as our own bodies and minds change over time. Progress happens when our actions show that we value our shared dignity. While passing massive national laws is a slow process, local communities can make immediate impacts. Small and practical changes like adding portable ramps to shops or creating flexible workspaces in modern offices show that we value every person’s contribution. These quick wins prove that accessibility is possible and that it benefits everyone, including a parent with a stroller or a professional recovering from an injury. When we stop forcing everyone to learn or work in the exact same way, we create a space where different styles are actually valued. This is the first step in empowerment because it lets each of us succeed in our own way. In places where government support or funding is scarce, local Community-Based Rehabilitation programs have proven that community members and teachers are the real leaders of change. By training people in the community to support different needs, inclusion becomes a daily reality driven by the people who live there. In many cultures, caring for one another is a deep tradition, yet the burden on families can become overwhelming without support from healthcare systems. While it is hard to change an entire country’s healthcare policy overnight, we can start by building local support groups. Inclusion becomes sustainable when our formal institutions like schools and clinics are empowered to support the family unit. Real change usually starts close to home. Most global improvements began with local groups who knew exactly what their community needed. We are at our strongest when the people most affected by a policy are the ones leading the search for a solution. While we cannot always change high-level government policy immediately, grassroots advocacy like the "Nothing About Us Without Us" movement shows that local pressure eventually forces national leaders to take action. If we want to make an impact, we must start where we are and ask ourselves three questions. The first two are easy to start today, while the third is a lifelong commitment to ourselves and each other. ● Did we include people with real-life experience in this project? ● Was accessibility our goal from the very beginning? ● Will this help more of us participate in everyday life as we age? We are all empowered when we design our institutions to support the full range of human experience. While changing the entire world may not be realistic, making our own neighborhood more accessible is a gift we give to our future selves. I share more of these innovative approaches to disability worldwide in my book, Empowering Abilities: Innovative Approaches to Disability Worldwide, to help us all turn this vision into a reality.
Building a World for Everyone
awareness Calendar
July
National Minority Mental Health Awareness Month shines a light on the unique mental health challenges faced by minority communities, including barriers to care, stigma, discrimination, and lack of culturally responsive services. This month encourages education, understanding, and solidarity while uplifting voices that often go unheard. Throughout July, individuals and organizations are encouraged to share stories, artwork, poems, and videos using the hashtag #DepthOfMyIdentity to promote healing, representation, and awareness. Together, we can create safer spaces for conversations about mental health and ensure every voice feels valued and supported. By listening, learning, and supporting one another, we can help break the stigma surrounding mental health in every community. Disability Pride Month is celebrated every July to honor the achievements, identities, and contributions of people with disabilities while promoting inclusion, accessibility, and equal rights. The observance commemorates the signing of the Americans with Disabilities Act (ADA) in July 1990 and encourages society to recognize disability as a natural part of human diversity. Disability Pride Month is also a time to challenge ableism, celebrate self-advocacy, and amplify disabled voices in schools, workplaces, and communities.By working together to build more inclusive spaces, we help ensure that everyone has the opportunity to thrive and be celebrated for who they are.
National Safety Month is observed each June to help families and communities learn ways to stay safe at home, school, work, and during summer activities. Safety topics can include emergency preparedness, water safety, medication safety, heat awareness, and protecting individuals with disabilities and complex medical needs. DeafBlind Awareness is recognized each June to increase understanding and support for individuals who are deafblind. Deafblindness affects hearing and vision and can impact communication, learning, mobility, and daily activities. This month highlights the importance of accessibility, inclusion, and supportive services. PTSD Awareness is observed each June to raise awareness about post-traumatic stress disorder and mental health support. PTSD can affect children and adults after experiencing traumatic events and may impact emotions, behavior, relationships, and daily life. This month encourages understanding, support, and access to mental health resources.
June
In addition to the highlighted training opportunities, we offer several more. All trainings are FREE and relevant for parents, caregivers, and professionals working with school-aged children.
Introduction to Special Education If you are beginning the special education journey or wondering whether your child may need additional support in school, this webinar is a great place to start. Understanding evaluations, services, laws, and the IEP process can feel overwhelming, but you do not have to navigate it alone. Join Families Helping Families to gain valuable knowledge, ask questions, and feel more confident advocating for your child’s educational needs. Every child deserves the opportunity to succeed, and this training can help families take the next step with clarity and support. All Hazards Emergency Prep for People with Disabilities: Part 1 Emergencies can happen at any time, and preparation is especially important for individuals with disabilities and complex medical needs. This webinar will help families and caregivers learn practical ways to prepare for evacuations, natural disasters, and unexpected emergencies with confidence. From building an emergency kit to planning for medications, mobility devices, and communication needs, this training offers important tools that could make a critical difference during a crisis.
“Learning about our rights in special education gave me the confidence to speak up for my child and better understand the support available to our family. Thank you for such an informative training!” – Parent Participant
Families across Louisiana who receive Social Security, SSI, SSDI, or Medicaid supports should be aware of several important 2026 updates. Social Security and SSI benefits increased by 2.8% due to the annual Cost-of-Living Adjustment (COLA), which means many individuals will see slightly higher monthly payments. Work income limits for people receiving SSDI and early retirement benefits also increased, giving beneficiaries more flexibility to work while maintaining benefits. Louisiana families should also continue watching closely for Medicaid renewal notices and eligibility updates, especially those receiving waiver services or long-term supports. Staying informed, reporting income changes promptly, and keeping contact information updated with Social Security and Medicaid can help families avoid interruptions in benefits.
2026 Social Security and SSI Updates for Louisiana Families
Youth Toolkit to Supplement Security Income
The Social Security Administration now offers a comprehensive Youth Toolkit designed specifically for Supplemental Security Income (SSI) recipients ages 14–17 and their families. This resource helps transition-aged youth better understand important SSI policies and the supports available as they move toward adulthood. Inside the toolkit, families will find clear guidance on the age-18 redetermination process, how to appeal if benefits are discontinued, and how earnings may affect eligibility at age 18. It also explains valuable work incentives, supports for entering the workforce, SSI rules around higher education funds, and the benefits of opening an ABLE account. With practical tools and easy-to-understand information, the Youth Toolkit empowers families to navigate this critical transition with confidence and clarity.
The primary purpose of the Independent Futures That Work project is to build the competence and confidence of young adults with disabilities to access independent living and employment services so they can more successfully transition from the youth entitlement system to the adult eligibility system. Our Resource Center will also help family members and professionals improve their capacity to support these young adults with disabilities on their journey. To learn more and find resources scan the QR Codes above or visit Families Helping Families of Greater New Orleans website.
Emergencies can happen at any time, and having a go bag ready can help keep you and your family safe. A go bag is a collection of important supplies you may need if you must leave your home quickly during a hurricane, flood, fire, or other emergency. Some families also prepare a “stay kit” if they need to shelter safely at home. The good news is that preparing a go bag does not have to be expensive or overwhelming. Start small and add items over time. What Should Be in a Go Bag? Water and Food Pack enough water and non-perishable food for at least three days for every person in your household. One gallon of water per person per day is recommended. Include snacks, canned foods, juices, soups, and protein shakes if needed. Don’t forget a manual can opener and disposable utensils. Hygiene Supplies Include basic hygiene items such as: Soap and shampoo Toothbrush and toothpaste Hand sanitizer Toilet paper and baby wipes Trash bags These supplies can help everyone stay clean and healthy during an emergency. Clothing and Comfort Items Pack a full change of clothes for each person, including: Long sleeve shirts Pants Shoes Coats, gloves, and hats Also include blankets for warmth and comfort. Medications and First Aid A first aid kit is an important part of every go bag. Include: Bandages and gauze Pain relievers Gloves and sanitizer Antibiotic ointment Any prescription medications your family needs Keep medications updated and easy to access. Pet Supplies If you have pets, remember to pack: Pet food and water bowls Medications Leashes or carriers Waste bags and litter supplies Veterinary records Pets are family too, and they need emergency supplies as well. Important Documents and Contacts Store copies of important documents and emergency contact numbers in a waterproof bag. Include phone numbers for family members, doctors, and specialists. Final Tip Keep your go bag in an easy-to-reach location and check it every few months to replace expired food, water, batteries, and medications. Being prepared today can make emergencies less stressful tomorrow. For more emergency preparedness information, families can visit: https://www.disability-access-solutions.com/
Be Ready Before an Emergency: How to Prepare a Go Bag
There is something deeply powerful about feeling seen, heard, and included. For families of individuals with disabilities and complex medical needs, that sense of belonging can make all the difference. It can turn fear into confidence, isolation into connection, and uncertainty into hope. Advocacy often begins in small, deeply personal moments. Sometimes it starts during an IEP meeting when a parent realizes they have the right to ask questions and request support. Sometimes it happens during a doctor’s appointment, on a playground, or while helping a child navigate friendships and daily life. Advocacy is not always loud or public. More often, it is the quiet determination to keep showing up, learning, and speaking up for what is right. As a parent, I understand how overwhelming this journey can feel in the beginning. I remember sitting in meetings confused by terminology, uncertain of my rights, and afraid of making the wrong decisions for my child. Like many families, I wanted to do everything possible to help my child succeed, but I did not always know where to begin. Families Helping Families became a place where I found not only information, but empowerment. Through trainings, support, and connections with other parents who truly understood the journey, I gained the confidence to advocate effectively and become an active part of my child’s educational and life journey. That experience changed my life, and it is one of the reasons I am so passionate about helping other families feel informed, supported, and empowered. Inclusion is about far more than simply being present. It is about creating schools, workplaces, churches, playgrounds, and communities where every individual is welcomed and valued exactly as they are. True inclusion means recognizing strengths, talents, and potential before limitations. It means creating opportunities for individuals with disabilities to participate fully in every part of community life. At Families Helping Families of Greater New Orleans, we believe empowered families create lasting change. When parents understand their rights, connect with resources, and support one another, barriers begin to break down. Advocacy creates opportunity. Inclusion creates belonging. Together, they create stronger communities for everyone. This issue of Exceptional Times is dedicated to supporting families through every season of their journey. Inside, you will find resources, updates, summer learning ideas, community connections, and stories that remind us that none of us walk this path alone. We also know that every family’s journey is unique. The experiences of parents, caregivers, self-advocates, and individuals with disabilities carry incredible value. These stories help shape stronger programs, build meaningful advocacy efforts, and create connections for families who may feel alone in their journey. When families share their experiences, they help create understanding, encourage inclusion, and remind others that support and hope exist within our community. Every shared story has the power to educate, uplift, and create change. One parent recently shared: “Before connecting with Families Helping Families of Greater New Orleans, I felt overwhelmed trying to understand special education services and supports for my child. Their team helped me learn my rights, navigate the IEP process, and connect with resources I didn’t even know existed. Because of their guidance, I now feel more confident advocating for my child and making informed decisions for our family. Families Helping Families reminded me that I don’t have to walk this journey alone.” We invite parents, caregivers, self-advocates, and individuals with disabilities to continue sharing their experiences with our community. Whether it is a small victory, a lesson learned, or a moment of advocacy, your story could help another family feel seen, supported, and empowered. Your voice matters, and together, our stories create stronger communities. To share your story, email Kristine Dauzat at kdauzat@fhfofgno.org.
By Kristine Dauzat, Public Relations Manager
Every Voice Creates Change
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.
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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.
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700 Hickory Avenue Harahan, LA 70123 504-888-9111 800-766-7736 504-353-2350 fax info@fhfofgno.org fhfofgno.org