P.06
What's Going ON?
COVER STORY
Let's hear it for the boys!
for a Successful IEP Meeting P.18
ISSUE 34
Exceptional
Free Webinars and Training P.17
MAGAZINE
APR | MAY | JUNE 2022
The Dad Phenomenon P.04
TIMES
TOP TIPS
From the director, Mary Jacob
When Dreams Come True P.28
Protecting children with disabilities in in-school learning
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Awareness Calendar
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New Guidance
2ND Quarter April | May | June 2022
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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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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All Eyes On You
The Dad Phenomenon
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28 COVER STORY: When Dreams Come True
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Q&A on Serving Children with Disabilities Placed by Their Parents in Private Schools
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Civil Rights Protections for Individuals with Disabilities During the COVID-19 Public Health Emergency
GiveNOLA Day May 3, 2022
50th National Down Syndrome Congress Annual Convention
Louisiana School Finder
Top Tips for a Successful IEP Meeting
Ballot Drop Box Accessibility Requirements under ADA
Let’s Hear it for the Boys!
Feature Education Article
HDC Support to attend NDSC
OUR TEAM executive director MARY JACOB mjacob@fhfofgno.org - Ext. 207 statewide outreach specialist SHARON BLACKMON sblackmon@fhfofgno.org - Ext. 208 director of public relations BEBE BODE bbode@fhfofgno.org - Ext. 226 information & training specialist NICOLE DESROCHE ndesroche@fhfofgno.org - Ext.218 administrative assistant LIZ DUMAS ldumas@fhfofgno.org - Ext. 202 director of peer to peer support LAURA S. NATA lsnata@fhfofgno.org - Ext. 209 community resource specialist THUY NGUYEN tnguyen@fhfofgno.org - Ext. 211 community resource specialist STEVEN NGUYEN snguyen@fhfofgno.org - Ext. 212 director of training JESSICA RODRIGUE jrodrigue@fhfofgno.org - Ext. 204 director of administrative services DENISE SWEATMAN dsweatman@fhfofgno.org - Ext. 203 coordinator of grants and contracts SAVANNAH THIBODEAUX sthibodeaux@fhfofgno.org - Ext. 217
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Youth Virtual Hangout | Upcoming Holidays
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Exceptional Times
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Web Accessibility under ADA
700 Hickory Avenue Harahan, LA 70123 504.888.9111 | 800.766.7736 info@fhfofgno.org | fhfofgno.org
Over the past month, I’ve had a few moms mention to me that they brought their husbands to an IEP meeting. This is hardly earth-shattering, but it’s far from the norm. It’s estimated that a whopping 95% of IEP meetings are only attended by the mom. Wake up dads, we need you, too! One of these moms went on to say that whenever her husband attends an IEP meeting with her, the meetings seem to go a lot smoother. She doesn’t believe she is doing anything different, but she believes her husband’s presence makes the professionals alter their behavior. This mom even said her husband didn’t have much to say at the meeting, but just by him being present there was a noticeable shift. When I asked her in what ways the meeting changed, she explained how she felt her husband was taken more seriously; the team seemed more concerned about his approval. She said to some degree she almost felt invisible as the team seemed to forget she was there and directed most comments and questions to her husband. “It appeared like the only time the team acknowledged me was when my husband would redirect them to me,†she said. This mom told me her husband has a white-collar job, is well educated, and is a great dad. However, the one thing he isn’t knowledgeable about is the IEP process. This reminded me of a story that Rose Gilbert, the previous Executive Director at FHF of GNO, told me about the time her husband Mike went to an IEP meeting. The blue-collar dad decided to put on a three-piece suit and join his wife at their son’s IEP meeting. Again, there was a distinct transformation and the meeting flowed considerably more smoothly than previous meetings. Let’s face it: a meaningful IEP meeting will be somewhere between mentally exhausting and brutal. The acronyms and reports are enough to give you a headache. But the real stress comes in when a parent is trying to make the best decision for their child and the school doesn’t agree with that decision. It doesn’t surprise me when moms say they will no longer attend an IEP meeting without their husbands. In December 2018, I wrote an article entitled, “My Twelve-Year Vacation.†There is certainly something very liberating about knowing you will never have to attend another IEP meeting. I never once brought a man with me, and now I wonder what I missed out on. Since this phenomenon has really piqued my interest, I decided to conduct my own unofficial research to see if I could get to the bottom of this “dad phenomenon†and determine if it really is a thing. As all good researchers do, I set up a poll on Facebook. Although the responses varied, the majority have had the same experience. Some believed it wasn’t so much about the dad being there as it was about both parents attending. Most stated that the child’s dad didn’t contribute a lot to the IEP itself, but his presence was a major contributing factor. Rebecca Ellis, a mom and advocate from the Northshore, told of her experiences. “I’ve seen and experienced better outcomes when dads attend and speak a little. They don’t have to say much at all and they don’t have to be experts in what they are saying. Mom could be at the end of her rope trying to advocate for a particular thing and dad just says something like, ‘That’s really important to me too.’ Totally nonspecific! But it can often change the outcome.†In my attempt to better understand why fathers were treated differently, I contacted a few special educators to pose this question to them. I spoke to three different professionals, who wish to remain anonymous, in three different school districts about the dad phenomenon. All agreed it’s a rare occasion that dad shows up to any IEP meeting. One teacher said, “Since COVID and doing many IEP meetings on Zoom, more dads are participating.†She said that before the pandemic, she’d go two years without seeing a dad. Another teacher said, “Often moms come to the table like it’s a social event. They want to bring snacks and seem to think we can just hang out all afternoon.†The same teacher said that when dad comes, it is much more business-like because he’s looking to get out of there as soon as possible. Dads seem to stick to the subject and have fewer anecdotal stories to share. While I certainly believe the first two teachers, it’s the third one that brought up what I think is the real reason. She stated, “When dad shows up, it’s real business. He’s often annoyed because he even has to be there. It’s not that he doesn’t want to be there, it’s the fact that the school isn’t taking his wife seriously enough that she has to bring in reinforcements. As a teacher, I often agree with the parent(s) and even with dad there, my hands are tied by the administration. It’s the principal or administrator that takes dad a lot more seriously. I can’t explain why, but female administrators seem to be intimidated by a dad. I strongly believe dads should come to all meetings. If a mom gets emotional, the administrator seems to exploit that by pushing the mom’s buttons. Sadly, I’ve witnessed this on several occasions. It’s really sad to see how some moms are treated, especially if they happen to be teachers themselves. I do not doubt that the students who have dads come to IEP meetings have better IEPs, the IEPs are followed, and the students have better outcomes.†Karen Scallan, another mom and advocate from the river parishes, had more to add. “I’ve always advised dad or another male relative to show up in a suit. ALWAYS. Matt [Karen’s husband] always did. He didn’t say that much, but when he did they sat up straight.†From my unofficial research, I can say Karen is probably right. Apparently, the school officials do sit up straight for dads. Why is it that the dad gets more respect than the mom? In a perfect world, all parents would attend every IEP meeting. But as we know, we don’t live in a perfect world, some parents don’t get paid when they need to take off work to attend school meetings, and dads might be absent due to many factors that are outside of mom’s control. The bottom line is, moms should get the same respect as dads. Is it time for moms to start acting like dads at the meetings? Maybe so. At a minimum, I’d recommend every parent to have a written agenda of what they want to discuss. Stay on topic and keep the snacks at home for the kids. Another mom who wishes to remain anonymous because she is also a teacher thinks the whole IEP process is a game. “As a second-grade teacher, I’m a classroom expert,†she explains. “However, as a mom of a second-grader, I suddenly lose all credibility. It’s very disheartening to see how individuals that wear hats both as a teacher and a parent are treated by the very professionals they work with every day. As the expert on my child and an expert on second-grade curriculum, I should be your dream IEP member.†Because this teacher decided to ask her ex-husband to attend the meeting, her very own administration attempted to turn him against her. When that didn’t work, she was advised after the meeting that she really shouldn’t bring him back and that she needs to learn to be a team player. Another thing she mentioned was the number of “unwritten policies,†including waiting until the last minute to invite the parents. Educators know that most parents don’t know their rights, won’t be prepared, and are willing to sign off on anything. The one thing schools never tell parents is that the Individuals with Disabilities Education Act (IDEA) requires schools to have some flexibility when it comes to times and places of meetings. IEP meetings do not have to only take place between school hours and on your school campus. Section 300.322 of IDEA requires parent participation in meetings. It specifically states each public agency (school district) must take steps to ensure that one or both of the parents of a child with a disability are present at each IEP Team meeting, or are afforded the opportunity to participate. That includes: Notifying parents of the meeting early enough to ensure that they will have an opportunity to attend; and Scheduling the meeting at a mutually agreed-on time and place. According to Section 1124 of Bulletin 741, Louisiana Handbook for School Administrators, “Each LEA [School District] shall take whatever action is necessary to ensure parental participation as required by federal, state, and local guidelines in the development of the IEP.†In a nutshell, if dad wants to be involved or if mom wants dad to be in attendance and he can’t due to working or other factors, the parent can request the IEP be held at a time and place that works for both of them. David Mitchell is a dad of two kids with IEPs. Even though he isn’t a lawyer, he considers himself an expert in disability law. “At the end of the day, I’m the one responsible for these humans’ success in life,†says David. “I’m the one that will need to take care of them. I need the school to do their job, which is to educate them. I am 100% supportive of the school and am there whenever they call me for anything. I’ve shown up with tools to help build things, I’ve chased wild animals off the campuses, and I’ve even substituted in the office when they need me. We need to be a team. This is the only way we can ensure kids are given every opportunity they need to be successful adults.†He rather proudly boasts he knows more about the law than anyone in his kid’s school district and feels confident he could go toe-to-toe with any school district attorney. In an unusual role reversal, he goes to all IEP meetings as a solo parent. He proudly states his wife is the breadwinner and he loves playing the role of stay-at- home dad, PTA dad, and field trip dad. He admittedly said he has never had any real issues at an IEP meeting. But he also explains that it’s all business. “I treat each IEP meeting as a business meeting and tell the team up front that yes, I can drop everything and be at the school in 15 minutes, but if you want to continue having a good working relationship, you will give me a two-week notice and set aside two hours of time. We can laugh and play around any other time, but never at the IEP meeting.†He admits it only took one meeting for the school to realize how serious he was about the IEP process. He says he has also witnessed his fair share of moms leaving the school defeated. When I asked what he thought he did differently than the defeated moms, he was quick to reply. “Moms are more sensitive, and while skeptical, they are scared of the unknown. For example, if the school tells the mom, ‘Well, we can do that, but I can’t guarantee ___,’†mom often second-guesses herself and caves. The school tried this with me at the first meeting I ever attended and I explained to them they WOULD guarantee everything they put on that IEP and if there was a problem, it was their job to reconvene the IEP so that as a team we could figure out why it wasn’t working.†After completing my unofficial research and analyzing what I learned, there is definitely something to this “dad phenomenon.†My advice to all moms is to add another seat at the table for dad. If you are a single mom, try to bring another male in your child’s life to attend with you, even if it pains you as a woman. Are you ready to experience the dad phenomenon at your next IEP meeting?
by Mary Jacob
continued on p.34
"It’s estimated that a whopping 95% of IEP meetings are only attended by the mom. Wake up dads – we need you too."
It seems like when we talk about families where at least one child has a learning difference or a disability, we always talk about the mom being the one to carry the load when it comes to caregiving: “Wow, that mom sure has a lot on her plate!†“What a great mom she is, juggling all she does and taking care of her son’s special needs as well.†“That must really tear out a mother’s heart, seeing her child going through so much.â€
by Sharon Blackmon
Admittedly, the incidence of divorce is significantly higher in families where there is a child with a disability. But when it comes to caregiving, I think dads get a bad rap. Not all men are working all the time and never present with their family. Not all men are emotionally distant and consider the raising of the children “women’s work.†Not all men shy away from things like changing diapers or giving baths or making dinner. As a matter of fact, I personally know quite a few of them who are just as engaged as the mom when it comes to household chores and caregiving. Come by my house on any given evening between 5 and 7pm and you will likely hear a lot of singing and laughter and general joviality coming from the bathroom. That would be the sounds of my husband giving our son his bath. When Ernie was 15 and I was expecting our daughter, Tommy took over most of Ernie’s caregiving duties. It was good timing, since Ernie was getting older and it was only right for us to try to preserve some of his dignity by not having his mom bathe and shave him every day. That’s when bath time became a daily party at our house! Ernie loves to listen to music while he’s in the tub, and true to his nature with most things, Tommy has to take it up a notch and join in with singing and drumming and whatever else goes on behind the (thankfully!) closed door. Bath time isn’t all my husband took over while I was pregnant. He started doing almost all of Ernie’s tube feedings. He began pulling up his meds and ordering refills when needed, and he always physically handled Ernie while we were out in the community by assisting him with mobility and the bathroom during outings. He is our son’s favorite person in the world, hands-down. And that is amazing, considering I was a single mom to Ernie for over seven years before Tommy even entered the picture. But make no mistake: I happily passed the baton and am so very thankful to have a spouse who took it up and ran with it, without missing a step!
Ernie and Tommy
Julia, Ernie, and Tommy
Mike, Colt, Kaci, and Malcolm Billings
Mike Billings is another amazing dad I met recently who has made a life of raising children with various disabilities that came to him through foster care. He and his wife, Pamela, have been married for 12 years. In 2011, they endured the tragic passing of their infant son, Park, after more than a year in the NICU due to his being born extremely premature. Even through their own incomprehensible grief, Mike and Pamela realized that the NICU was full of babies that needed homes – babies whose needs they were already equipped to manage. In 2013, after months of training sessions and home visits, they took in their first foster child. Kaci had sustained a traumatic brain injury due to shaken baby syndrome and was blind and would likely always be dependent for all her care. Mike and Pamela adopted Kaci in 2014, and went on to foster many more kids and adopt several others as well, all of them with a known disability or special healthcare issues. Currently in their home Mike and Pamela have Colt (17), Kaci (9), Ryan (7), Dallas (5), and Malcolm (5). Malcolm is their only foster child at the moment; Colt is Pamela’s son by a previous marriage; they adopted Kaci and Ryan; and they are in the process of adopting Dallas, who will need a heart transplant at some point. He will be the last addition to their family, as they feel like they are lacking the energy needed to continue to care for young children with such significant needs. You can tell just by talking with him how invested Mike is in his family; his whole life is wrapped up in those kids. Pamela teaches biology and microbiology virtually at the college level, working from home and providing video lectures and online instruction. Mike has a little more flexibility in his work schedule, so he generally takes care of the younger kids, giving meds and getting them ready and on the school bus every morning. It’s nothing for him to be up before the sun, putting laundry into the wash and getting breakfast going. For leisure and recreation, Mike says they enjoy going to the beach, and they generally go to Orlando for a theme park vacation once a year. Of course, with three wheelchairs and seven bodies, even a family outing to the grocery store requires two vehicles! But they have vacations down to a science and know exactly how to fit everything they need for the family into their car and van. When I asked Mike to sum up his life and roles for me, all he could say was, “I love being a dad!â€
Ryan , Malcolm, Kaci, and Dallas
Sherman and Trent Rogers
continued p.42
Sherman Rogers is part of our Parent Advisory Group here at FHF of GNO. As the Group Facilitator I’ve come to know him over the past year as we have worked on FHF outreach products and attended zoom meetings. Sherman’s son Trent (12) has FOXG1 syndrome, a rare neuro-developmental disorder caused by a mutation of the FOXG1 gene, which impacts brain development and function. It is often characterized by seizures, inability to control body movements, and lack of speech. Trent does not walk or talk, and requires total care. Sherman’s wife, Michelle, stopped working when Trent was about three to become his full-time caregiver. Trent doesn’t sleep a lot, and requires medication every three hours during the night to stay asleep. The family resides in Lafitte, with Michelle’s parents just across the street on the bayou. Sherman says they help out a lot with Trent’s care as well; it’s a culture where family pulls together to take care of each other. With the pandemic, Trent didn’t go to school for almost two full years but just returned after the holidays. “I’m the relief man,†says Sherman. Trent doesn’t always tolerate car rides or social outings very well, so they spend a lot of time at home, sitting on the screened porch or out by the water behind Trent’s grandparents’ house. “I get home about five, and then Michelle can go to the grocery store or take a nap, whatever she needs to do.†Sherman generally gets Trent’s medications together in the evenings and also bathes Trent, as he has a hard time with getting in the water. “It’s about to become a two-person job! But for right now, I do it.†Sherman and his family look forward to getaways in east-central Alabama, where some of his family live. They try to stay someplace close to Lake Martin so they can enjoy the water and being in the country.
Now in its 9th year, GiveNOLA Day is a 24-hour event hosted by the Greater New Orleans Foundation to inspire people to give generously to nonprofits making our region stronger, creating a thriving community for all. Families Helping Families of Greater New Orleans (FHFofGNO) asks for your support. On May 3rd, you can use the direct GiveNOLA link below 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. Visit our website scrapbook and read our success stories. Your donation will help us continue providing support to the over 6,000 requests we receive annually. Thank you all for your continued support.
April Fools Day - April 1, 2022 Good Friday - April 15, 2022 | FHF Closed Easter - Sunday, April 17, 2022 Easter Monday - Monday, April 18, 2022 Earth Day - April 22, 2022 Cinco De Mayo - Thursday, May 5, 2022 Mother's Day - Sunday, May 8, 2022 Armed Forces Day - Saturday, May 21, 2022 Memorial Day - Monday, May 30, 2022 | FHF Closed Flag Day - Tuesday, June 14, 2022 Father's Day - Sunday, June 19, 2022
April 19 - May 2: Early Giving Period
GiveNOLA Day returns on May 3, 2022!
DONATE NOW
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Upcoming Holidays
by Bebe Bode
Some days are better than others, let’s face it. We’ve all had those times when we celebrated simply not throat punching some wise guy for staring or laughing at our child with a disability. And don’t get me started on the nasty comments about my parenting skills! You’d think that with all the information out there about autism awareness and the prevalence of autism, those stares and comments would diminish and there would be more acceptance. Don’t get me wrong; there are a lot of loving and accepting people out there that have been a joy to meet -- genuinely kind, interested in engaging with your child, and after you’ve encountered them know that they get it and are not sitting in the realm of those who pass judgement. But why is it so hard to shake the negative encounters on some days and so easy on other days? Is our sense of being offended heightened because we have a child with a disability? Is it only on one of our bad days -- or on one of our child’s not so good days -- that we react? Or are we just fed up with the astonishing level of stupid out there where people enjoy acting like an ass, belittling others, making comments on something they have no idea about, and think they know it all? THE BEHAVIORS When my son was little it seemed that his behaviors were more acceptable, or maybe explainable, in the minds of others because he was a child. Now that he is a man of 27, I find people are far more likely to stare, giggle, or make a comment. He has worked long and hard to get where he is today. He is an amazing person and a joy to get to know and be around. One of the main behaviors he has now that is out of the ordinary is scripting movie lines constantly. It is something that keeps him calm and is harmless but does bring a lot of attention to him. THE SCRIPTING On this particular day a few years ago we were at Barnes and Noble, one of Seth’s many favorite places. We made our usual routine around the store, reading a Dr. Seuss book or two, choosing a new book to buy, going upstairs to look at the DVD’s and CD’s, looking at all the Lego and animal figurines, checking out, and then making our way to the Starbuck’s inside for his chocolate milk and chocolate chip cookie and mom’s coffee. The line was long and while we were waiting Seth got a little louder than normal when he scripted. Noticing all the stares, I reminded him to use his inside voice and he did. THE STUPID PEOPLE When we sat down to enjoy our goodies, Seth continued to script but lower than before. I tried to redirect him with conversation, and his answers were a bit loud and monotone. A few of the people there would look when he started talking and then turn away, but these two particular ladies would not stop staring at him, making faces at him, and making me very uncomfortable. Since I have an allergy to stupid people, I was getting ready to have an allergic reaction. I had to remind myself, once again, not to lose it in front of my son. THE UNEXPECTED Incapable of taking any more of their bull$h!t, I looked at them and said, “Can I help you?†They looked at me shocked and said, “Uh, no!†“I can’t help but notice your stares and facial expressions and hear your whispers about my son. Do you know anything about autism?†I said. “No,†they replied. As I began to educate them, this man who was waiting for his coffee yelled out, “Your son has autism? My son has autism, too! I LOVE MY SON WITH AUTISM! I LOVE MY SON WITH AUTISM!†All the stares we’d been receiving were all now on him, which I am sure was the ultimate goal of this wonderful dad whose son that he LOVES has autism. TO THE LOVING FATHER - THANK YOU I hope the wide-eyed delight and the smirk on my face as I looked at you were thanks enough as you grabbed your coffee with a cocky smile and left, all eyes on you! Thank you for taking all the eyes off my son and me. You have obviously walked a few miles in my shoes, and I will never forget you or this day. Happy Father’s Day!
Our calendar is packed with interesting and informative training opportunities this quarter!
These education-related courses are offered once or twice each month: Navigating the IEP is a 4-part webinar series offered monthly during the school year. Part 1 covers the requirements of notification to the parent for an IEP meeting, IEP team members, IEP exceptionalities, General Student Information and Special Factors to be considered for a child with a disability. Part 2 focuses on the instructional plan and accommodations. In Part 3 we discuss the Program/ Services and Placement/ Consent Sections of the IEP. And Part 4 navigates the transition sections of the IEP. Parent Rights in Special Education is an interactive course that includes explanation of prior written notice, access to education records, when informed consent is required, the Independent Education Evaluation (IEE), your right to disagree with the school, and more! The ABCs of Extended School Year (ESY) Services provides an overview of the ESY process for children with disabilities including how children qualify and why, in many circumstances, the school uses the holiday breaks in determining if a child will qualify for ESY. Top Tips for Effective IEP Meetings offers some of the best ideas for IEPs and breaks them down into three parts: what to do before, during, and after the meeting. Implementing our top 5 tips in each of these sections should result in an effective IEP meeting. All About Tests and Evaluations answers some frequently asked questions regarding assessments and testing such as when to have your child evaluated and how to interpret those results. What Happens When Parents and School Disagree? Louisiana Special Education Dispute Resolution Options addresses different informal and formal dispute resolution options, how to request a dispute resolution option, and more! 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, Jessica Rodrigue at jrodrigue@fhfofgno.org.
Justice Department Issues Web Accessibility Guidance Under the Americans with Disabilities Act
The Department of Justice published guidance on web accessibility and the Americans with Disabilities Act (ADA). It explains how state and local governments (entities covered by ADA Title II) and businesses open to the public (entities covered by ADA Title III) can make sure their websites are accessible to people with disabilities in line with the ADA’s requirements. The guidance discusses a range of topics, including the importance of web accessibility, barriers that inaccessible websites create for some people with disabilities, when the ADA requires web content to be accessible, tips on making web content accessible and other information and resources. The guidance offers plain language and user-friendly explanations to ensure that it can be followed by people without a legal or technical background. “We have heard the calls from the public on the need for more guidance on web accessibility, particularly as our economy and society become increasingly digitized,†said Assistant Attorney General Kristen Clarke for the Justice Department’s Civil Rights Division. “This guidance will assist the public in understanding how to ensure that websites are accessible to people with disabilities. People with disabilities deserve to have an equal opportunity to access the services, goods and programs provided by government and businesses, including when offered or communicated through websites.†Finally, the guidance reviews the department’s ongoing work to advance website accessibility for people with disabilities through statements of interest and enforcement matters. For example, the department recently entered into numerous settlements with businesses — including Hy-Vee, Inc., The Kroger Co., Meijer, Inc., and Rite Aid Corporation to ensure that websites for scheduling vaccine appointments are accessible. The full guidance is available here. To learn more about the department’s disability rights work, please visit www.ADA.gov.
New Federal Guidance for Healthcare Providers on Civil Rights Protections for Individuals with Disabilities During the COVID-19 Public Health Emergency
by Dina Klimkina & Sean Slone
Our civil rights laws stand no matter what, including during disasters or emergencies, and it is critical that we work together to ensure equity in all that we do for all patients,†said Health and Human Services Secretary Xavier Becerra in a statement. This statement followed a string of complaints filed in early 2020 against a number of states alleging that their respective guidelines illegally discriminated against persons with disabilities. For example, the Alabama Disabilities Advocacy Program and others raised concerns that a state plan governing critical care allocation during the pandemic ordered hospitals to “not offer mechanical ventilator support for patients†with “severe or profound mental retardation,†“moderate to severe dementia†or “severe traumatic brain injury.†These concerns formed the basis for a formal complaint with the U.S. Department of Health and Human Services, Office for Civil Rights (HHS/OCR). Similar complaints were filed against other states. Rather than negate these complaints, Alabama, North Carolina, Pennsylvania, Tennessee and Utah entered settlement agreements with HHS/OCR. In addition, OCR resolved complaints with the North Texas Mass Critical Care Guidelines Task Force, the Southwest Texas Regional Advisory Council and the Indian Health Service to revise each entity’s crisis standards of care guidelines to reflect best practices for serving individuals with disabilities. OCR also resolved a complaint in Connecticut involving visitation rights for persons with disabilities in hospitals who require support personnel. Consistent with these settlement agreements applicable to particular states, OCR recently issued guidance to healthcare providers making it clear that civil rights protections for people with disabilities continue to have the force of law even when the nation is in a public health emergency. “During a public health emergency like the COVID-19 pandemic, biases and stereotypes may impact decision-making when hospitals and other providers are faced with scarce resources,†said OCR Director Lisa J. Pino. “OCR will continue our robust enforcement of federal civil rights laws that protect people with disabilities from discrimination, including when Crisis Standards of Care are in effect.†Crisis Standards of Care are state rules for triaging scarce resources that hospitals are required to follow. The standards vary widely by state and some plans give hospitals substantial discretion. Under the OCR guidance, persons with disabilities must be provided an opportunity to participate in, or benefit from, all healthcare and health-related services afforded to others, including COVID-19 testing, medical supplies, medication, hospitalization, long-term care, intensive treatments and critical care, including oxygen therapy and ventilators. The guidance reflects concerns that biases and stereotyping may have impacted decision-making when hospitals and other healthcare providers have allocated scarce resources during the COVID-19 pandemic. The new guidance updates a previous issuance in March 2020. Any healthcare program or activity receiving federal financial assistance from HHS is subject to federal civil rights protections. To be in compliance, such healthcare entities must consider a specific patient’s ability to benefit from the treatment sought, free from bias about disability. The new guidance is based on protections articulated in federal regulations implementing Section 504 of the Rehabilitation Act of 1973 and Section 1557 of the Affordable Care Act and is part of continuing HHS efforts to protect at-risk populations, advance equity and address disparities in healthcare provision during the pandemic. The guidance was issued in the form of frequently asked questions (FAQs). Numbers 5, 6 and 7 of the FAQs outline scenarios that a healthcare provider might consider in the allocation of resources: Whether an individual with a disability or an individual who is likely to have a disability after treatment will have a lower quality of life or relative worth to society compared with an individual without a disability who also requires treatment. Whether they can provide healthcare or deny a resource to an individual with a disability who has COVID-19 if it may require more of the resource than treating individuals without disabilities for COVID-19. Whether they can consider that an individual with a disability may not live as long as an individual without a disability after treatment. The answer in each case is “No.†The guidance also addresses how civil rights obligations apply to visitation policies and vaccination, testing and contact tracing programs. Disability rights advocates say COVID-19 has exacerbated existing disparities faced by people with disabilities. The guidance is something they have argued for since the earliest days of the pandemic, said Maria Town, president and chief executive officer of the American Association of People with Disabilities. “While we wish this guidance would have been issued sooner, the FAQs released by the department will provide health care providers and patients with disabilities alike with vital information to ensure that no person with a disability is denied necessary care during a crisis, a fear that continues to be all too real as we enter the third year of the pandemic,†she said. This article was reprinted with permission from The Council of State Governments.
The Justice Department announced it has issued guidance under the Americans with Disabilities Act (ADA) on how to ensure that ballot drop boxes are accessible to voters with disabilities.
The publication, “Ballot Drop Box Accessibility, the Americans with Disabilities Act,†is intended to help election officials understand the ADA’s requirements, including the physical accessibility standards applicable to ballot drop boxes, and for voters with disabilities to understand their rights under federal law. “The right to vote is the fundamental right upon which our democracy is built,†said Assistant Attorney General Kristen Clarke of the Justice Department’s Civil Rights Division. “For too long in our history, many voters with disabilities have faced barriers in exercising their voting rights. Many of these barriers continue even today, including physical barriers that prevent them from entering polling places or accessing a ballot drop box. The ADA requires election officials to select and provide accessible ballot drop box locations so that voters with disabilities can have the same voting opportunities as other voters. The Justice Department is fully committed to vigorous enforcement of the ADA to ensure that voters with disabilities no longer face discrimination in the election process.†The publication covers the elements and features of a ballot drop box that election officials should consider meeting the ADA’s accessibility requirements. The publication discusses the requirements for an accessible route to a ballot drop box, such as a level walkway without gaps and steps. It also discusses accessibility features of a ballot drop box such as a handle or lever that can be operated with one hand and without tight grasping, pinching or twisting of the wrist. The guidance includes a checklist of the accessibility standards used to assess a ballot drop box. The ballot drop box guidance is intended to be used together with the department’s “ADA Checklist for Polling Places,†a guidance document that discusses local governments’ obligations under the ADA to provide polling places that are physically accessible to voters with disabilities. The ADA Checklist for Polling Places covers the accessibility requirements for features that may be present at a ballot drop box location, such as parking, passenger drop off areas and building entrances. The Ballot Drop Box Accessibility publication may be found at ADA.gov homepage; the ADA Checklist for Polling Places publication may be found at ADA Checklist for Polling Places. Those interested in learning more about the ADA may call the Justice Department’s toll-free ADA information line at 800-514-0301 or 800-514-0383 (TDD), or access its ADA website at www.ada.gov. ADA complaints may be filed online at Step 1: Contact - Contact the Civil Rights Division | Department of Justice. Information about the department’s enforcement of federal civil and criminal laws related to voting may be found at Voting | Department of Justice.
Justice Department Issues Guidance on Ballot Drop Box Accessibility Requirements Under the Americans with Disabilities Act
2022 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.
"Voters with disabilities have faced barriers in exercising their voting rights. Many of these barriers continue even today, including physical barriers that prevent them from entering polling places or accessing a ballot drop box."
New guidance on protecting children with disabilities in in-school learning
This OSEP-revised document, Questions and Answers on Serving Children with Disabilities Placed by Their Parents in Private Schools, is intended to provide guidance regarding the Individuals with Disabilities Education Act (IDEA) requirements applicable to children with disabilities placed by their parents in private schools, students who are not enrolled in the local educational agencies (LEA), and for whom the provision of free appropriate public education (FAPE) is not at issue. This Q&A updates and supersedes the Department’s guidance, titled Questions and Answers on Serving Children with Disabilities Placed by Their Parents in Private Schools that was first issued in April 2011. This 2022 update includes additional questions and answers that address topics that have arisen as the field continues to implement the applicable provisions of IDEA and its implementing regulations. Additional Information about the Q&A Children with disabilities attending private schools will generally fall into one of three categories: those placed by their parents, who are not enrolled in the LEA, and for whom the provision of a free appropriate public education (FAPE) is not at issue; those placed by their parents and who are, or previously were, enrolled in the LEA and the provision of FAPE is at issue; and those placed by the LEA as the means of ensuring that FAPE is made available. This document applies to children in the first category. As used in this document, the phrase “FAPE is not at issue†means there is no disagreement between the parent and LEA about the availability of a program to provide FAPE to the child and the parent has placed the child in a private school and is not seeking financial reimbursement for the private school placement. Contents of the Guidance To give you a peek at the kind of info that’s in the guidance, it is divided into the sections listed below. Within each section, there are multiple questions posed and then answered. A. Child Find and Individual Evaluations B. Consultation with Private School Representatives and Representatives of Parents of Parentally-Placed Private School Children with Disabilities C. Equitable Services D. Provision of Equitable Services E. Services Plans F. Location of Services and Transportation G. Equitable Service Providers H. Out-of-State Children with Disabilities and Children with Disabilities Whose Parents Live in Other Countries I. Home-Schooled Children with Disabilities J. Preschool Children K. State Voucher and Scholarship Programs L. Children in For-Profit Private Schools M. Extended Public School Closures N. Proportionate Share Calculation for Equitable Services O. Expenditures and Allowable Use of Funds P. Property, Equipment, and Supplies Q. Dispute Resolution: State Complaints, Mediation, and Due Process Complaints
The US Department of Education and US Department of Justice issues new policy regarding protecting children with disabilities in in-school learning and ensuring that children with disabilities are provided with a Free, Appropriate Public Education in the Least Restrictive Environment regardless of whether they are being taught virtually or in person. The guidance will be translated into Spanish. The guidance does not contain any information on the types of accommodations that may be needed to protect the families of children with disabilities who themselves could be educated in person but whose family members may be at significant risk of harm should they contract COVID.
When Dreams Come True Careful Planning and Great Friends Equal an Amazing Trip to Disney World
Pictured: The Judice Family,Nick, Emily, Hailey, and Zack. The Cummer Family: Annie, Trey, William Charles, and Robert.
My husband Trey and I have dreamed of taking our children to Disney World since they were babies. We’ve had several friends take their children, and I always hoped that one day we would be able to take our three boys. Since William, Charles and Robert all have autism, I knew that we would have to wait until they were able to handle not only the trip to get there, but being out of their routine; the new noises; the crowds; the food; and a whole myriad of things I couldn’t even imagine. It was hard to wait, but boy was it worth it!
Advice We had the most amazing Disney trip! It took months to plan and the packing took weeks. But when you travel with three children with autism, planning is everything. I had only been to Disney once when I was a teenager, and Trey hadn’t been since he was in the Navy in the late 90’s. We are very blessed to have amazing family friends, the Judices, that went with us and were able to help us navigate the parks and where to stay. The Judices have taken several family trips to Disney and were able to help us pick which parks to go to on what days based on their experience with the crowds. Emily helped me map out where to go in the park, which rides the boys could tolerate, and how many we could possibly do per day. Having advice from someone that had been to the parks several times before was a lifesaver for us; I highly recommend getting help from a seasoned Disney vacationer before planning your trip. Emily warned me that sometimes the rides break down. I hadn’t thought about that before, so we decided not to discuss any of the rides with the boys until we were in the park and we knew they were working. We did not want to get the boys’ hearts set on one only to discover it was out of commission; that would definitely have led to a meltdown. We learned on the first day with Bobby about discussing a ride too far in advance. We weren’t planning on riding Space Mountain until about 3:00, but made the mistake of talking about it in detail at about 10:00. It was all he could talk about until we finally rode it. Turns out he did not even really like the ride, it was one of the rides he liked the least. But because we had discussed details about it, he HAD TO RIDE IT NOW! For the rest of the trip we did not describe a ride until we were in the line for it. That worked out much better for him, and for all of us. Food One of our biggest issues was food. To say the boys are picky eaters is an understatement. William is a vegetarian, and Bobby will not eat if there is a smell that is unpleasant to him. Charlie is our daring eater, but that isn't saying much. Our first stop in Florida was Target to pick up some breakfast items for the room: fruit, snacks, drinks, and anything we may have forgotten. They would have full bellies entering the park and fortunately Disney allows you to bring in a backpack. Each day we packed a bag of snacks labeled for each boy. We allowed them to eat whatever they were willing to try. If they would eat a Mickey Mouse shaped Ice Cream at 9+am, fabulous. Popcorn at 10am, great. Whatever they were willing to try while being overstimulated was okay this week. We would encourage them to eat a protein filled snack in between these sugary snacks, but if they didn’t we were okay with that. As long as they ate, we were happy. Keep in mind our children don’t have any medical or dietary conditions that would become a problem with a week of eating like this, and they understood that this was a special time and only temporary. Flying We originally were going to drive to Disney, which I dreaded enormously. Then we found some cheap tickets through an amazing Black Friday deal, so we decided to fly. This was the first time flying for the boys, and Bobby in particular had some anxiety about the flight. Our amazing support worker for Charles and Robert, Deanna Bourgeois, eased his mind by showing him videos from YouTube on what to expect when going to the airport. I also brought gum for their ears (they have ear problems), noise canceling headphones, and a surprise bag of various fidgets for each boy. Target had some wonderful dollar fidgets, but you can get some pretty cheap ones from Five Below and other places these days. They did not know about the fidgets until we were in line for the TSA checkpoint. They were each allowed to pick one to help them deal with the long line, and the rest they could have on the plane. I chose fidgets instead of allowing them to use tech because my kids don’t do well with interrupted tech time. I knew that the TSA checkpoint would be a start and stop situation where they may have to pause their games, and that could be an issue. We let the boys know that once we were boarded and in our seats and the pilot said it was okay to use electronic devices, they would get tech time. When we give them an exact time a preferred activity will occur, it lessens the uncertainty of the situation and decreases the number of questions we get. We flew Southwest Airlines so I signed up for boarding assistance for individuals with disabilities. They let us pre-board, which helped the boys with their jitters about flying. The flight crew and captains were very nice, and even offered to let the boys to see the cockpit. Bobby took full advantage and jumped right into the pilot seat! Packing and Unpacking Whenever I go somewhere that may be crowded, I dress the boys all in the same color--preferably something bright. It was important that the boys have clothes that they are comfortable in, so we let them choose their clothes and we paired the colors with days based on what they chose to pack. Deanna had Charles and Robert put their complete outfits (socks, pants, underwear, t-shirt) in a gallon sized zipper bag labeled with their name, and the number day of the trip that they needed to wear it. The zipper bags are great for many reasons: they organize the suitcase, are easy to transfer to a hotel dresser, and the kids can grab one and take it into the bathroom for bath time. It is so convenient to tell the boys to grab bag number ___ from the dresser and go take a shower. My kids don’t sleep in PJs, they sleep in their shirts and shorts or pants for the next day. One of my sons likes to sleep in blue jeans; to each their own! So after showers the boys put on their clothes for the next day. In addition to clothes, we had the boys pack comfort items. Bobby chose to pack a body sock and a toy, and Charlie chose a few toys and Mr. Pudders, his stuffed cat. William is a teenager and is starting to need fewer sensory or comfort items, so he chose not to bring any. I am a naturally unorganized person; I have become organized because my children need it. When we are on a trip, having a hotel room organized and explaining to the boys where everything goes helps them with transitioning to a new location and eases their stress, which makes for a much more relaxing vacation. When Charlie cannot find something he will have a meltdown, so giving him a set space to put items helps when we are in a new location like a hotel. When we get in the room, we turn on the TV or have the boys play tech while Trey and I get to work assigning places to everything. Trey and I unpack the clothes, plug in chargers, unpack toiletries, assign shoe locations, hang the dirty clothes bag, unpack food, unpack comfort items and sensory items, assign beds, and set up the bathrooms. Once everything is set up we go over where everything will be with the boys and where they need to keep their items. It’s a system that works for us! Safety Bobby used to elope, and I have never gotten over the fear of losing one of my children. Some may call it neurotic, I call it cautious. Because Bobby was an eloper I have had the boys go over how to describe me to someone since they could speak, and we go over it every time we plan to be in a crowd. We rehearse my name, my hair color, eye color, height, build, and phone number. Each place we go to we discuss how to tell the difference between a worker and a guest. If they get lost, we go over where to stand and who to ask for help. This is a constant lesson, and we do it all the time. In addition to discussing safety measures, we had physical safety devices. We all had the Mickey bands, which have trackers in them. Before I knew that though, we bought Tiles (another Black Friday deal). Each boy had a Tile attached to their shoe. Before we left town we taught them how to use the alarm feature, and we showed them how we use the app. Pin trading is a big deal for kids, and the boys had lanyards for their Disney pins. In the pocket of their lanyard was my name and phone number, so in case they panicked and forgot, they had a backup. In the packing section I mentioned the coordinating clothes, but I also bought them each a bright lime green sweatshirt (shout out to Dirt Cheap for $7 sweatshirts!) so they would be easy to spot. For extra measure I had a highlighter yellow sweatshirt that I either wore or had tied around my waist and I wore the same color clothes as they did. I wanted to make sure that if we were separated all of us were easily identifiable; you never know how someone may react when lost. Disability Access Service Pass The Disability Access Service (DAS) pass was a lifesaver! The pass is specifically for people who would have difficulty tolerating extended waits due to a disability. It doesn’t provide immediate access to rides, but it allows you to request a return time for that ride that is comparable to the current standby wait. This allows you to go do other things instead of physically waiting in the line. The boys never would have made it through a regular line; we would have ridden maybe one ride and would have had to leave. The DAS pass covers the person with a disability plus 5 guests, so two DAS passes were plenty for our party of nine. You can register for the DAS pass 30 days in advance of your park visit online with Disney. The person with the disability has to be present for the video chat and they will take a photo of the individual. Everything was linked to our Disney bands, which made it all very easy. (If you do decide to pre-register for a DAS pass, make sure that you have a good internet connection, as they have time limits that they can stay on the video chat with you. We don’t have great internet and almost lost connection, but it all worked out.) When you sign up, you get two rides that you can pre-register for at each park you are going to visit. In each park there is a ride or two that you can’t pre-register for, but you can still use your DAS pass for any ride when you get there. When you are pre-registering make sure your whole party (the individual with a disability plus 5 guests) is linked to the DAS pass. If they are not, you will have to do it when you get to the park. Once in the park, if you have any problems anyone under a blue umbrella can help you. They were super nice and helpful every time we stopped and asked for assistance. If you download the Disney app you can manage your DAS pass rides once in the park. The DAS pass will not show up on the app until you are in the park. Once you scan the DAS pass for a ride in the park, you can schedule another ride. I would book our next ride right after we scanned the boys’ bands while in line, because you can only have two booked at a time. This way we always had a ride ready for our party. Check the website before your visit, as this information could always change. Communication The reason it was so important for us to wait to go to Disney is because we have three children with autism. Having multiple children with autism, we may miss the cues that they are getting overstimulated, or getting ready to meltdown. This is why we wanted to wait until the boys could communicate their needs. This is not always verbal communication. When we were in Hollywood Studios, Charlie began getting agitated and held my hand tighter and tighter as the day wore on. As the grip tightened, I knew it meant less time in the park. I could tell that he was trying to enjoy it, but it was becoming too much. Sensing a problem, I asked him, “Do we need to go?†At first it was no, but by the third time I asked he said yes. Then I asked him, “Can we give your brothers a 30 minute warning or do we have to go now?†He decided to give them 30 minutes, so we went somewhere quiet to wait. Without our communication being where it is now, this would have been an epic meltdown and we would have all been miserable. These communication skills have been built over years of playdates, parks, farmer’s markets, birthday parties, doctor appointments, therapy sessions, sporting events, family gatherings, museums, field trips, parades, and vacations. The boys have worked very hard to improve their ability to express their needs, and it shows. So I try to be attuned to what they are telling me. I hope our story helps anyone planning a trip to Disney with kids with disabilities. We are constantly adapting and learning new ways to improve our lives, and these are tricks and tips that have helped us go and do and function better as a family. We had an amazing trip thanks to some careful planning. Thanks for reading!
Robert "Bobby" Cummer
The Judice Family,Nick, Emily, Hailey, and Zack. The Cummer Family: Annie, Trey, William Charles, and Robert.
The Cummer Family: Annie, Trey, William, Charles, and Robert.
Annie and Trey Cummer have been married for 20 years and live in Ponchatoula. They have three amazing sons: William, Charles, and Robert, who they homeschool. Annie runs her own business, Beyond Accommodations, where she provides supports and services for individuals with disabilities.
Charles Cummer
Hailey, Zack, William, Charles, Annie, and Bobby
Phenomenon
Waterford Upstart is an educational tool that guides students along an online adaptive learning path toward fluent, lifelong learning in just 15 minutes a day, 5 days a week. This program is of no cost. All funding is covered by the Louisiana OFF. Upstart can be accessed online and focuses on reading comprehension, math, and science. The total required usage is only 15-20 minutes a day, 5 days per week. The program also closely follows Louisiana Early Learning and Development Standards. Upstart will provide a computer and internet for the duration of the program if needed for families. Early education is an important part of developing strong, self-reliant families. If they look to you for resources, please share Waterford Upstart with them. If you know of any families with 4-year-olds who begin kindergarten in 2022, they can register now! Registration will continue this year until all spots are filled. If families are interested, they can: Go online to waterford.org/upstart/pre-qualify to register (it’s a very short form that should take no more than 7 minutes), or If you prefer, call 1-888-982-9898 to register and a Waterford staff member will take the online information over the phone.
¿Está su hijo listo para el jardÃn de infantes? Su hijo necesitará saber mucho antes de que comience la escuela. Cosas como: Conociendo las letras del abecedario contando hasta 10 escribiendo su nombre Únase a los miles de padres que han ayudado a sus hijos a aprender estas habilidades y más con Waterford Upstart. Aparta tu lugar hoy. Todo para la preparación para el jardÃn de infantes Su hijo completa nuestro programa de educación temprana desde la comodidad de su hogar, ¡sin costo alguno para usted! ¡Aprenderán lectura básica, matemáticas y ciencias para tener éxito y confianza en la escuela! Más de 90,000 familias en todo el paÃs han utilizado el programa de aprendizaje en el hogar de Waterford Upstart para ayudar a sus hijos a prepararse para el jardÃn de infantes . Acerca de Advenedizo de Waterford Obtienes una computadora para completar el programa . Su hijo usa nuestro software en casa por solo 20 minutos al dÃa Las familias reciben apoyo y asesoramiento personalizado. ¡ En promedio, los niños que se gradúan ingresan al jardÃn de infantes leyendo casi a un nivel de primer grado! Registrese hoy Llama ahora 1-888-982-9898
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 6, 2022 Blue & Green Spirit Week starts April 16, 2022 National Donate Life Month Blue & Green Day Friday, April 22, 2022 National Pediatric Transplant Week April 24-30, 2022
Mental Health Month - For 2022’s Mental Health Awareness Month, NAMI will amplify the message of “Together for Mental Health.†We use this time to bring our voices together to advocate for mental health and access to care through NAMI’s blog, personal stories, videos, digital toolkits, social media engagements and national events.
APRIL
Every May, the cystic fibrosis community comes together for CF Awareness Month. About 30,000 people in the U.S. have cystic fibrosis, a rare genetic disease. 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 health care.
awareness Calendar
MAY
April is National Autism Acceptance Month and April 2, 2022, is the fifteenth annual World Autism Day. World Autism Awareness Day (WAAD) - (April 2) The 2022 World Autism Awareness Day observance This year‘s observance will address inclusive education in the context of SDG 4 - the promise and reality - through a virtual event that will include a moderated panel discussion, along with brief presentations by self-advocates, educators and other experts. The theme of inclusive education is intrinsically linked with the focus of last year’s WAAD observance, “Inclusion in the Workplaceâ€. Panelists in last year’s event emphasized how crucial it is to foster inclusive quality education for people on the autism spectrum so that they can fulfill their potential and achieve sustainable success in the labour market. In this respect, inclusive education is the key to the transformative promise of the Sustainable Development Goals, to LEAVE NO ONE BEHIND. The event is organized by the UN Department of Global Communications and UN Department of Economic and Social Affairs, with the support of civil society partners including the Autistic Self Advocacy Network, the Global Autism Project and the Specialisterne Foundation.
National Minority Health Month - April 2022 OMH is proud to announce the theme for National Minority Health Month 2022: Give Your Community a Boost! This year’s theme focuses on the continued importance of COVID-19 vaccination, including boosters, as one of the strongest tools we have to end the COVID-19 pandemic that has disproportionately affected communities of color. This theme supplements the CDC recommendations to prevent COVID transmissions, such as physical distancing, use of well-fitting masks, adequate ventilation, and avoidance of crowded indoor spaces.
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 - Celebrated in April each year, Donate Life Month features an entire month of local, regional and national activities to help encourage Americans to register as organ, eye and tissue donors and to celebrate those that have saved lives through the gift of donation. National Facial Protection Month National Minority Health Month National Sarcoidosis Awareness Month Occupational Therapy Month Oral Cancer Awareness Month Sexual Assault Awareness and Prevention Month Sexual Assault Awareness Month STD Awareness Month National Minority Cancer Awareness Month National Public Health Week (April 5–11) Rape, Abuse and Incest National Network Day (April 5) World Health Day (April 7) National Youth HIV/AIDS Awareness Day (April 10) Every Kid Healthy Week (April 26–30) World Meningitis Day (April 24) World Immunization Week (April 24–30) National Infant Immunization Week (April 26–May 3)
JUNE
Alzheimer’s and Brain Awareness Month Cataract Awareness Month Hernia Awareness Month Men’s Health Month Myasthenia Gravis Awareness Month National Aphasia Awareness Month - 2 million people in the United States have aphasia, but 84.5% of Americans state that they’ve never heard the term aphasia. This fact needs to change immediately to pave the way for better communication experiences for people living with aphasia. Get ready because it’s time for Aphasia Awareness Month. 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 National Scleroderma Awareness Month Scoliosis Awareness Month National Cancer Survivors Day (June 6) Men’s Health Week (June 13–19) Family Health and Fitness Day (June 11) World Sickle Cell Day (June 19) PTSD Awareness Day (June 29) Deaf-Blind Awareness Week (June 27th to July 3, 2022)
Hurricane Preparedness Week is May 1-7, 2022. Be ready for hurricane season. Today you can determine your personal hurricane risk, find out if you live in a hurricane evacuation zone, and review/update insurance policies. You can also make a list of items to replenish hurricane emergency supplies and start thinking about how you will prepare your home for the coming hurricane season. If you live in hurricane-prone areas, you are encouraged to complete these simple preparations before hurricane season begins on June 1, 2022. Keep in mind, you may need to adjust any preparedness actions based on the latest health and safety guidelines from the CDC and your local officials.
American Stroke Awareness Month Arthritis Awareness Month Better Hearing and Speech Month 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 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 (May 1-7) National Neuropathy Awareness Week (May 4–10) World Hand Hygiene Day (May 5) - Wash your hands! Cornelia de Lange Syndrome Awareness Day (May 9) National Women’s Health Week (May 8-14) National Stuttering Awareness Week (May 11–17) Food Allergy Awareness Week (May 12–18) 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)
A Beautiful Child "When God gave me a son, a beautiful child, My heart was filled with joy that lasted a while. Then doctors told me of autism That took my hopes, my dreams, my smile Away from my Beautiful child. So I fell on my knees and asked God to show me the way That I may have my hopes, my dreams, my smile one day. He said, “It’s in front of your face. The blue eyes, the bright smile And the light that smiles from the face of an angel I call your child.â€
Parker, Seth, and Pat Bode
BOYS p.9
Pat Bode penned a poem a while back that sums it up for him, and probably for a lot of other dads. It’s called “A Beautiful Child:â€
Pat Bode is the proud dad of two young men – Seth (27) and Parker (21) – and the outgoing and gregarious husband of Bebe, the Director of Public Relations here at FHF of GNO. He is also the Chief Cook and candy-making genius behind Pirogue Praline Company, a family business they started a few years ago to give Seth, who has autism, meaningful employment. Pat’s pralines had become so popular with extended family and friends that when they were trying to come up with an idea for a business, Parker suggested they start selling his dad’s pralines. What the family refers to as their “Purple, Green & Praline Dream†is to highlight the talents and abilities of their son Seth, and once established, to do the same for other adults with disabilities. Pat has done a lot of work–in the kitchen as well as in the community, visiting with people and talking up the praline biz–to make Pirogue Praline Company the success that it is. The tasty confections have been featured on local news stations as well as The Today Show; they have appeared in local publications as well as Cooking with Paula Deen magazine; and they’ve been picked up at the Bode home in Metairie as well as delivered all over the country and abroad. People see Seth in public and have to take a selfie with “The Praline King,†as he is known. Besides posing for pictures and serving as the face of the company, Seth works to bag, label, and package the pralines for distribution. “Pirogue Praline Company has brought Seth out of his shell, and made him blossom,†says Pat. Pat gets teary-eyed talking about his boys. “In the last year we’ve learned that life is precious. I just love being their dad, and just spending time with them. It doesn’t matter what we’re doing, just taking a ride, going out to eat with them. I love to just be with them and see them enjoying themselves.†When it comes to Seth, the thing that scares Pat the most is the thought of having him put in a facility after he and Bebe are gone. He is passionate about Seth having work skills and the ability to live as independently as possible with proper supports. After working his day job, Pat goes home to cook pralines, often until midnight or after. “That’s why I work so hard. It’s all to help Seth.â€
While moms may outwardly show more emotion over a diagnosis like spina bifida or cerebral palsy or autism, dads are no less affected. There is a process like grief that occurs, as parents mourn the loss of hopes and dreams and plans they had for that child. Through the process, though, new hopes and dreams and plans can develop, as parents learn to adjust to the reality of life with a disability. And hopefully through it all they come to realize and appreciate all the special strengths and abilities and uniqueness that every person possesses, with or without a diagnosis. 

Seth and Pat Bode
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.
The Office for Citizens with Developmental Disabilities (OCDD) has four developmental disability home and community-based waivers, New Opportunities Waiver (NOW), Residential Options Waiver (ROW), Supports Waiver, and Children's Choice Waiver have now been operationalized to a tiered waiver system of service delivery, which will allow for individuals to be supported in the most appropriate waiver. To learn more, click here.
700 Hickory Avenue Harahan, LA 70123 504-888-9111 800-766-7736 504-353-2350 fax info@fhfofgno.org fhfofgno.org