What's Going ON?
COVER STORY
P.50
ISSUE 33
Exceptional
Free Webinars and Training P.18
MAGAZINE
JAN | FEB | MAR 2022
Nurturing Our Resilience: Onward to 2022 P.04
TIMES
you are not alone
From the director, Mary Jacob
FINDING GRACE P.34
COVER STORY: FINDING GRACE Pictured: Jay, Joy & Andrew Zainey
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.
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
OFFICE HOURS Coronavirus COVID-19 Closure In an effort to do our part in helping eliminate the COVID-19 Virus, Families Helping Families of Greater New Orleans office will be closed to the public and all guests until further notice. We are still assisting families. All staff are working remotely from their homes. Families needing assistance please call our office at 504-888-9111 or 800-766-7736. Click here for up-to-date online resources specific to COVID-19.
Exceptional Times
1st Quarter Jan | Feb | Mar 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
04 Nurturing Our Resilience: Onward to 2022 06 Legislators Introduce Bill To Increase Funding for Students With Disabilities 07 Act 421 Children's Medicaid Option 08 U.S. Autism Prevalence Inches Upward as Racial Gaps Close 13 Gov. Office of Disability Affairs hosts GOLD Awards Ceremony 14 Getting to Know Assistive Technology 16 Youth Virtual Hangout 17 LDA 2022 Conference 18 What's Going On? 23 Welcome Aboard, Savannah 24 A Child With Special Needs, Needs Special Planning 28 The Child Tax Credit 30 Public Benefits and Personal Finance 39 Returning To School Must Include a Reinvestment in Section 504 Plans 40 Employment Supports for People with Invisible Disabilities 43 Apple's iPad Gets Assistive Technology Boost 44 HHS and HUD announce expanded partnership, new Housing and Services Resource Center 50 You Are Not Alone 56 Awareness Calendar 66 Resources for Parents & Educators 68 Family Engagement 69 Youth Engagement 70 Louisiana School Finder
700 Hickory Avenue Harahan, LA 70123 504.888.9111 800.766.7736 504.353.2350 fax info@fhfofgno.org fhfofgno.org
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by Mary Jacob
At my age, I take the days I have left on earth seriously. Tomorrow is never guaranteed, and the older one gets the more evident it becomes. However, I’ll be the first to say we never needed a year to end like we needed 2021 to go down in a flaming fury. I think it’s safe to say that most of us are happy 2021 is over, and we’re ready to welcome 2022 like that long-lost relative who just showed up to dinner with grandma’s most valued secret recipe. I bet that on December 31, 2021, right at midnight, if you had listened carefully you would have heard a collective sigh of relief that this unpredictable year was over.
Nurturing Our Resilience: Onward to 2022
Not surprisingly, our most sought-after program is still peer support, with an astounding 7500+ interactions with individuals seeking support, resources, or disability information.
2021 has tested our resilience in many ways. COVID, hurricanes, and equity issues seemed to be daily conversations. Many of us felt like we were hanging on by a thread till the end. The year has been full of challenges and problems, but at FHF of GNO, it has also created new opportunities. Since the beginning of the pandemic, many of you have inspired us with your strength and determination. This has contributed to our resilience to be here for you when you needed us. Amid all the craziness, we were still able to accomplish many great things and look forward to sharing more new things with you in 2022. Here are some of our 2021 highlights: Parent Advisory Group – We created a Parent Advisory Group to help plan, review, and implement the work we do. We want and need authentic parent feedback on what we do. This diverse statewide group of volunteers helps keep us focused on what parents need from our center. If you are interested in being a member of this very important group, please contact Sharon Blackmon at sblackmon@fhfofgno.org. One of the new products I am the most excited about is our new Welcome Booklet that is sent to all first-time contacts. The Parent Advisory Group played an integral part in determining its content and format to ensure there is just enough information for new parents without overwhelming them. Virtual Youth Hangout – Our virtual hangouts were created to give youth and young adults from 16 to 26 a place to build friendships, share stories and resources, and learn some self-advocacy skills. We have individuals from all over the state participating. If you know someone that would benefit from this group, please contact Steven Nguyen at snguyen@fhfofgno.org. Exceptional Times Digital Magazine – Even though Exceptional Times isn’t a new product, the open rate has increased tremendously. Families love reading about other Louisiana families. Most of you have a great story to tell, even if you don’t know it. We are always looking for families and stories to feature. Even if you don’t know if you have a great story, talk to us and we’ll help you discover what others want to know. If you have something you want to share or an idea, please contact Bebe Bode at bbode@fhfofgno.org. Training – Last year we developed and updated many training curriculums. Some of these included our new four-part IEP training series, the addition of Frequently Asked Questions 2.0 and 3.0 to our already popular FAQ 1.0, and our dispute resolution training on what to do when parents and schools don’t agree. In total, we provided 161 trainings as well as content for another 133 trainings presented by other FHF Centers. In addition, we partnered with the University of Chicago to provide training around Federal Advocacy. If your organization is interested in sponsoring a training or you have ideas for trainings you would like to see offered, please contact Jessica Rodrigue at jrodrigue@fhfofgno.org. Website Accessibility – In 2021 we added Recite Me, a state-of-the-art accessibility platform for websites, to our website. This investment offers many accessibility features, including translation to over 100 different languages. Junior League Partnership – FHF of GNO partnered with the Junior League of New Orleans in the expansion of their diaper program to the adult incontinence program that provides free incontinence supplies to older children and adults with disabilities. Through the donations collected by Junior League, they can fill in the gap of supplies needed. If you or someone you know has a need, please have them contact Laura Nata at lsnata@fhfofgno.org. Landscape Survey of Medical Providers – Our Community Resource Specialists, along with the other Community Resource Specialists in the state, undertook the massive project of surveying every pediatric primary care provider and specialist to determine who is currently taking Medicaid and their availability. This data was provided to the Bureau of Family Health, who will use it to update their data systems of available doctors for children and youth with special health care needs. Peer Support – Not surprisingly, our most sought-after program at FHF of GNO is still peer support, with an astounding 7500 + interactions with individuals seeking support, resources, or disability information. We had interactions with families and professionals across the state. The parishes we received the most calls from were led by Jefferson -- our home parish, so there was no surprise there -- followed by Orleans, East Baton Rouge, St. Tammany, and Rapides. The parishes that made the largest gains were Lincoln and Ouachita Parishes. For the first time in recent history, we had some form of interaction with families in EVERY parish of the state. Onward to 2022 and looking forward to continuing to provide great service and new things, I anticipate 2022 will test this thing called our “new normal.” As humans, we tend to dislike change. Some have completely embraced this new normal while others are still kicking and screaming to go back to the old ways of doing things. I’m honestly not sure where I fit into it all. I’ve witnessed the benefits of great technology and how we can do more with less, but I also fear the lack of human touch. Whatever ends up being the “new normal,” rest assured, Families Helping Families of GNO will be here, ready to serve you. Happy 2022!
ET
continued on p.64
Legislators Introduce Bill To Increase Funding for Students With Disabilities
Act 421 Children's Medicaid Option (TEFRA/Katie Beckett) Begins January 1, 2022
On Tuesday, November 16th, Senator Chris Van Hollen (D-MD) and Representative Jared Huffman (D-CA) reintroduced the IDEA Full Funding Act, a bipartisan, bicameral piece of legislation to finally ensure Congress' commitment to fully fund the Individuals with Disabilities Education Act (IDEA). In 1975, Congress passed IDEA to ensure that every child with a disability has access to educational opportunities. This law was a historic step forward, but since its passage Congress has failed to provide the funding promised under this bill. Under the 1975 IDEA legislation, the federal government committed to pay 40 percent of the average per pupil expenditure for special education. However, that pledge has never been met, and current funding is at just 15.7 percent. The IDEA Full Funding Act would require regular increases in IDEA spending to finally meet the commitment to America's children and schools. Source: The Arc of the United States
Act 421 of the 2019 Regular Legislative Session tasked the Louisiana Department of Health with starting a program that lets certain children with disabilities receive Medicaid coverage, even if their parents earn too much money to qualify for Medicaid. Act 421 created what is known as a TEFRA option in Medicaid. TEFRA refers to the Tax Equity and Fiscal Responsibility Act of 1982, which is a United States federal law that can help families with children younger than 19 years old who have a disability receive care in their homes rather than an institution. TEFRA programs are sometimes referred to as the Katie Beckett program or the Katie Beckett waiver in other states. In Louisiana, the program is Act 421 Children’s Medicaid Option (Act 421-CMO). Louisiana Medicaid received approval from CMS to implement the program as a State Plan Amendment. The program will be available beginning in January 2022. In order to be eligible for the Act 421-CMO option, a child must meet all of the following eligibility criteria: Be a Louisiana resident. Be a United States citizen or qualified non-citizen. Under the age of 19 (not to exceed the age of 18). Has a disability that is recognized under the definition of disability utilized in the Supplemental Security Income program of the Social Security Administration, regardless of whether the child is eligible to receive benefits under that program. Ineligible for Medicaid coverage when the income of the child’s parents is considered. Has or has applied for a Social Security Number. Excluding the assets (resources) of parents, the child does not have total assets (resources) exceeding $2,000 in value. Excluding the income of parents, the child’s income is less than three (3) times the Federal Benefit Rate (FBR), referred to as the individual Special Income Limit (SIL). The child meets an institutional level of care provided in a hospital, skilled nursing facility, or intermediate care facility (ICF). Care provided safely at home for less than the cost of institutional care. Steps to Enrolling in Act 421-CMO Beginning January 1, 2022, you will be able to apply for the Act 421-CMO program. Applications received prior to January 1 will not be considered for Act 421-CMO. There are four (4) general steps to enrolling in the Act 421-CMO program. In order to begin the enrollment process, complete a Medicaid application and submit verification documents. Step 1. Completing a Medicaid Application There are four (4) ways to apply for Medicaid – online, by mail, in person or by phone. Choose the method that works best for you. Apply online. To apply by phone, call 1-888-362-4207. To apply in person, locate the nearest application center here or Medicaid Regional office here. If applying by mail, download Medicaid application. Mail completed application to: Medicaid Application Office 6069 I-49 Service Rd, Suite B Opelousas, LA 70570 When applying for Medicaid, the disability question (as shown in question 10 below), needs to be answered ‘yes’ to be routed for Act 421-CMO processing:
by Peter Hess
Data are based on total cumulative incidences across six Autism and Developmental Disabilities Monitoring Network sites. Gray shading represents confidence intervals. By Niko McCartySource: Shawet al. Get the data Created with Datawrapper
Autism prevalence in the United States rose to 1 in 44 children in 2018, up from 1 in 54 in 2016, according to a new study examining autism prevalence among 8-year-olds in 11 states. As in previous years, the uptick is likely due to improvements in identification, diagnosis and referrals to services, rather than a rise in how many children have autism, experts say. The U.S. Centers for Disease Control and Prevention (CDC) released the report today. The data are based on health and educational records for 220,281 children, collected as part of the CDC’s Autism and Developmental Disabilities Monitoring (ADDM) Network. States in the ADDM Network include Arizona, Arkansas, California, Georgia, Maryland, Minnesota, Missouri, New Jersey, Tennessee, Utah and Wisconsin. About 4.2 times as many boys as girls were identified as having autism, a sex ratio that is consistent with previous ADDM reports and with other prevalence estimates. Among children who were 4 years old in 2018, the autism prevalence was 1 in 59, according to an accompanying report on 220,394 children across the 11 ADDM sites. This figure rose from 2016’s estimate of 1 in 64 children. Compared with the older cohort, these children were about 1.5 times as likely to be either diagnosed with autism or identified as needing special education by age 4, the study found.
Improving identification: Rising autism prevalence numbers are probably due more to improved identification and diagnosis than to a true change in prevalence, experts say. Martin Barraud / Getty Images
U.S. Autism Prevalence Inches Upward as Racial Gaps Close
Cumulative incidence of autism among 4- and 8-year-olds (per 1,000 children) More children had been diagnosed with autism by age 4 in 2018 than in 2014.
“It certainly seems like some of this change is due to the way children are being identified, diagnosed and served in their communities,” says Matthew Maenner, an epidemiologist and surveillance team lead for the CDC’s National Center on Birth Defects and Developmental Disabilities, who led the report on 8-year-olds. “Where it’s really informative is about local practice, and the variability in local practice, and our continued need to address issues related to systemic disparities in health care,” says David Mandell, professor of psychiatry at the University of Pennsylvania in Philadelphia, who was not involved with either report. “But I think we need to stop thinking about it as an accurate estimate of the prevalence of autism in the United States.” Closing gaps: As in the 2016 surveillance year, there were no significant differences in autism prevalence among white, Black, Asian or Pacific Islander children, suggesting that early screening and identification have helped narrow racial disparities when it comes to early identification of autism. On average, the prevalence numbers for Hispanic children were comparable to those of other groups, but at 5 of the 11 ADDM sites, Hispanic children were identified less often than their white, Black, Asian or Pacific Islander peers, Maenner says. “It was a difficult thing to communicate this year,” he says. “It does seem like each year, things among the 8-year-olds seem to be closing.”
Among the children who were 4 years old in 2018, however, the situation is different. The latest ADDM report on 4-year-olds includes children from all 11 sites, whereas the report for 2016 included only 6 sites. Drawing on a larger trove of data, ADDM investigators found that prevalence was lowest among white children as compared with Black, Hispanic, Asian and Pacific Islander children. This difference is not driven by one site pushing up the average, but by a broader trend across all 11 sites, says Kelly Shaw, an epidemiologist at the National Center on Birth Defects and Developmental Disabilities, who led the report on 4-year-olds. “Hopefully it reflects better access to services,” she says. Consistent with previous years’ reports, a disproportionately high number of autistic Black children in both age groups were also identified as having intellectual disability. One possible explanation is that children without intellectual disability may not be coming to the attention of healthcare providers as readily, says Stuart Shapira, associate director for science at the National Center on Birth Defects and Developmental Disabilities, who was not involved in the new reports. That issue may be more pronounced for Black children because of systemic biases. “If providers see a Black kid and they’re behind in language, and they’re having poor social communication, do [the providers] think autism? Or do they just think this kid has an intellectual disability or behavior problem?” asks Katherine Zuckerman, associate professor of pediatrics at Oregon Health and Science University in Portland, who was not involved in the new studies. New measurements: ADDM reports usually come out every two years in March. The previous one was released in March 2020. This year’s reports arrived several months earlier than usual, thanks to new methods for estimating prevalence at the 11 ADDM sites, the researchers say. Rather than having ADDM clinicians examine data from individual children’s school records and medical records — a time-consuming and data-heavy process used in years past — the new method relies on records of autism diagnoses from clinicians, special-education classifications of autism and hospital billing codes for autism services, yielding similar results from half as much data. Amid the coronavirus pandemic, the new approach made it possible for investigators at the ADDM sites to complete their work with minimal data access problems, Maenner says.
These are total prevalence rates across 11 Autism and Developmental Disabilities Monitoring Network sites in 2016 and 2018. Hashed lines represent 95% confidence intervals. By Niko McCartySource: Maenneret al. Get the data Created with Datawrapper
Prevalence of autism among 8-year-olds, by race (per 1,000 children) Autism prevalence in 2016 was significantly lower for Hispanic children, suggesting they were not being identified as often as other autistic children. That trend has since reversed; in 2018, prevalence was lowest amongst white children.
This article was originally published on Spectrum, the leading site for autism research news.
Governor John Bel Edwards with the 2021 winners of the Inclusive Art Contest and the Outstanding Leadership Awards
But the new methods may not eliminate some of the shortcomings of ADDM data, Mandell says. “They’re basing their accounts solely on what’s in the healthcare record, and [researchers at different sites] have variable access to those records,” which may explain some of the regional variability. Mandell says he would like to see resources going to service and support systems for autistic children and their families, beyond just tracking prevalence. “How do we think about improving the quality and the inclusiveness of education care, of the ability of primary care providers and specialty physicians to provide appropriate care to address the many sources of disability and distress that these kids and their families experience, rather than continuing to put resources into counting?” he says. To this end, investigators in the ADDM Network are collecting data on 16-year-olds with autism, tracking issues related to their mental health, co-occurring conditions and issues with transitioning to adulthood, Maenner says. With additional reporting by Angie Voyles Askham.
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by: Bebe Bode On Dec. 8, Gov. John Bel Edwards and the Governor’s Office of Disability Affairs honored the winners of the 2021 Governor’s Outstanding Leadership in Disabilities (GOLD) Awards and the 2021 Inclusive Art Contest in a ceremony at the Old State Capitol. The GOLD Awards is an opportunity for Louisiana to pay tribute to the achievements and dedication of individuals in the disability community. "We are obviously here today to recognize, to honor, and pay tribute to some truly incredible individuals who I believe represent the very best of our state," said Gov. Edwards. "I just came from church and what I will tell you is the people in this room do the Lord’s work every single day. Every single day, and I am so pleased to be here to recognize them with these awards." The Governor went on to discuss COVID, the hurricanes, flooding, and tornadoes we have endured and asked that we lift up each other and our state in prayer that 2022 will be a better year. "We’re due, it’s time for a better year," said Gov. Edwards. "I am actually excited about what is going to happen next year. Let’s make sure we continue to do everything that we can in 2022 to make our state more inclusive for all of the wonderful citizens that live here." The inclusive Art Contest enables participants to increase awareness of the importance of inclusion in our society through artistic expression. This year’s contest theme was "Accessibility of the Future." The 2021 award recipients are as follows: Adult Division 1st - Bonnie Dempster 2nd - Robert Biggs High School Division 1st - Trinity Williams 2nd - Anna Hee Middle School Division 1st- Paisley Dempster 2nd - Brooke Harsley 3rd - Zoey Mitchell Honorable Mention - Tiffany Maddox Honorable Mention - Andrew Thibodeaux Kindergarten - Fifth Division 1st - Randy Hayes The 2021 Governor’s Outstanding Leadership in Disabilities Awards are as follows: Youth of the Year: Owen Delatte This award is given in recognition of a young person with a disability who has, by example of achievement, provided encouragement and inspiration to other young people with or without disabilities. Volunteer of the Year: Patricia Ehrle This award is given in recognition of extraordinary service by a volunteer or organization that has substantially enhanced the opportunities in Louisiana for people with disabilities to use their skills and develop their potential as members of society. Veteran of the Year: Chad Granger This award is given in recognition of a veteran with a disability who has served honorably in the United States Armed Forces, and has a record of exemplary service in the disability community. Service Provider of the Year: Marilu Major This award is given in recognition of service above and beyond the call of duty by an individual or organizational provider of services to people with disabilities. Public Servant of the Year: Amy Dawson This award is given to a government employee in recognition of outstanding achievement in hard work and dedicated service for people with disabilities. Patsy Barrett Memorial: Karen Roy Patsy Barrett was a human rights activist, and she initiated the GOLD Awards in 1982 to recognize those people who work for equality, justice and dignity for people with disabilities. Ms. Barrett was also involved in policy development at the national level and she worked with leaders who helped formulate the Americans with Disabilities Act into Federal Law. Ken Vince Memorial: Cody Reitz Ken Vince was a rehabilitation counselor who touched the lives of hundreds of people in Louisiana through his advocacy for people with disabilities. His commitment generated a greater public awareness of the needs of people with disabilities and fostered a greater participation in society for the disability community. Distinguished Merit: Opportunities Academy This award is given in recognition of extraordinary service by an individual, organization, or firm working in the disability field that has consistently presented opportunities in Louisiana for people with disabilities to utilize their capabilities in achieving full participation in society. DSP of the Year: Shannon Edmond This award is given in recognition of extraordinary service by a direct support professional that has substantially enhanced the life for people with disabilities to live more independently and productive, as well as support self-determination and individual development. Family of the Year: Barthe Family This award is given in recognition of a family who has a family member(s) with disabilities and who, by involvement in the community, and mutual support of one another, are an example of courage, strength, and unity for other families in Louisiana. Elected Official of the Year: Representative Larry Bagley This award is given in recognition of extraordinary service by an elected official that has substantially supported or enhanced the opportunities for people with disabilities. Educator of the Year: Rebecca Reeves This award is given in recognition of an outstanding individual who has contributed significantly in educating people with disabilities in our community. Service Animal of the Year: Phoebe Trunnell This award is given in recognition of a service animal who has exhibited exceptional assistance to a person with a disability. We at FHF of GNO would like to offer our heartfelt thanks and congratulations to all of the recipients of the 2021 Art Contest and Governor’s Outstanding Leadership in Disabilities (GOLD) Awards. View the 2021 Gold Awards on YouTube Source: Governor's Office of Disability Affairs Pictures: Bambi Polotzola - Facebook
Percent of autistic 4-year-olds evaluated for autism by age 3 The proportion of autistic 4-year-olds assessed for autism rose sharply from 2014 to 2016 but decreased from 2016 to 2018.
The Governor’s Office of Disability Affairs hosts GOLD Awards Ceremony
These are the total evaluation rates across all Autism and Developmental Disabilities Monitoring Network sites that had data available in a given year. By Niko McCartySource: Shawet al. Get the data Created with Datawrapper
GETTING TO KNOW ASSISTIVE TECH!
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by Ren Koloni
When I first heard the words “assistive technology,” all I could imagine was something out of science fiction, like a helpful hologram or a robotic backpack. But I’ve since realized that I’ve used assistive technology every day for my whole life, and it doesn’t have to be fancy or futuristic. “Assistive technology” just means “a tool that helps a disabled person accomplish a task.” That tool can be futuristic and cutting-edge, like software that tracks eye movements on a screen to help people communicate. Or it can be as low-tech as a carved wooden walking cane – something humans have made and used for thousands of years. What kind of tech we use depends on a lot of things, like what we have access to or what we can afford, what our needs and limitations are, what we’re used to, and what feels best to use. Some tech comes from doctors or disability services, some is available to buy, and some we even make ourselves. Because of this, people use all sorts of different kinds of assistive tech to accomplish the same task. A nonverbal person might use text-to-speech on a computer in order to communicate. Another nonverbal person might use paper and pencil. When I’m nonverbal, I type or use emojis on my smartphone. Like phones, many kinds of assistive tech are a visible part of everyday life. If you don’t wear glasses, you probably still know somebody who does, and people wear face masks to protect themselves and others from germs like COVID-19 every day. But there are some kinds of assistive tech you may have never seen or noticed before. You may not know if you’ve met someone who uses an ostomy bag to help with bladder or bowel problems, because many people wear them under their clothes. Or maybe you’ve never met someone who wears a cannula to help them breathe. Maybe you didn’t notice that a new coworker was wearing hearing aids, or you didn’t realize that your friend used closed captioning until you watched a movie at their house. Look around, and you’ll start to notice that all kinds of people use all kinds of assistive technology every day! If you’ve never seen a certain kind of assistive technology before, you might be surprised or confused by how it looks, or by how the person uses it. But assistive tech doesn’t have to be scary. It just takes time to learn how it works and how it feels. For over ten years, I’ve used a cane to help me with balance and pain while I walk. My cane is short, with a curved, soft handle, and we’re best friends. When I’m walking, I know just how to move my body in sync with my cane, and how to tell where to place the foot with each step. When I sit down, I know how to settle the handle on a nearby surface so that my cane doesn’t fall. But there are other kinds of canes that I don’t know how to use. A blind friend of mine uses a white cane. Unlike my cane, white canes are straight and very long, and don’t bear much weight. My friend knows how to use her cane to understand what the world around her looks like. By moving the tip of the cane over the ground, she can tell if there are things in her way, or whether she’s about to move her wheelchair onto carpet or concrete. She also knows how to prop her cane up against a wall without it falling down. But even after helping her a few times, I still have no idea how she does it! I’m great at handling my own cane, but it takes more than that to know how to handle someone else’s. Unless she asks me to help her and tells me what to do, I don’t touch my friend’s cane, even if she isn’t using it. I trust her to know how to handle her own assistive tech much better than I do. You can use these good manners with all sorts of assistive tech. Don’t touch people’s assistive tech – their wheelchairs or walkers, the tablet they use for AAC, their pill container, their stim toys, or any other tool they use – unless they ask you to, and tell you how to handle it. Imagine grabbing someone’s glasses from off their face, or yanking their leg out from under them! Just like you’re the only person who can choose what to do with your body, the person using assistive tech is the only person who can choose what to do with their tech. It’s also important not to assume that someone uses their assistive tech in a particular way. Making assumptions is an easy way to make something new more familiar to us, but that doesn’t mean our assumptions are right. When it comes to assistive tech, there’s only one assumption that’s always safe to make: the person using it probably knows what they’re doing! At stores, I use a wheelchair or motorized scooter to get around. Sometimes I stand up with my cane to get something I need. That doesn’t mean I don’t need my wheelchair or scooter. Some people use a wheelchair because they can’t stand, but I use a wheelchair because I can only stand a little. Other people use wheelchairs so they don’t get too tired, or to prevent injuries. If you aren’t sure why someone is using their assistive tech in a way you don’t expect, take a minute to imagine all the different ways that the same tech might help different people with different needs. Service animals might help a blind person know when to cross a street, but they also might warn their owner if they can smell a seizure coming on. Someone wearing headphones at the movies might be listening to a description of the movie’s visuals, or they might be listening to white noise so they don’t get overwhelmed by the loud sounds. Plus, assistive technology has nothing to do with diagnosis or identity – it’s all about fulfilling needs. An autistic person and a person with cerebral palsy might use the same AAC software. Or, someone who doesn’t think of themselves as disabled at all might use the same jar opener as someone with arthritis or Parkinson’s. All bodies have different needs and limitations, and assistive tech is here to support them, regardless of why. This Assistive Technology Awareness Month, let’s challenge one another to explore the possibilities of assistive technology. Think about the assistive tech you use, the tech you’ve seen other people use, and the kinds you want to learn more about. Check online for assistive tech users talking about their experiences, and if you want to, you can talk about your own. The more we know about each other’s assistive tech, the better equipped we are to interact with each other. You might also consider the tasks in your daily life you wish you had more support for, or that you’ve noticed a friend or family member yearning for: there’s probably assistive tech for that! Over the years, I’ve been able to share all kinds of different tools, from shower stools to blue-light glasses to compression gloves, with friends who needed support, but didn’t know how to get it, or thought they weren’t “disabled enough” to deserve it. But the beauty of assistive tech is that there are as many tools to help our bodies as there are different kinds of bodies, and no limits on who’s allowed to use it. Indeed, using tools to improve our lives isn’t strange, shameful, or the stuff of science fiction – it’s human nature. Share the good news: assistive tech is for every body!
The Learning Disabilities Association of America is holding its 59th Annual Conference in the heart of New Orleans, where there's no shortage of things to do! Check out their completely non-exhaustive list of sights, sounds—and tastes!—to start your planning. Who Should Attend this Conference? Teachers of special education and general education Counselors, Social Workers Para Educators/special education instructional assistants Principals and school administrators Psychologists Parents of children with learning disabilities Attorneys and Advocates Researchers, Medical and Mental Health Professionals Adults with learning disabilities and attention deficit hyperactivity disorder College student support personnel
Over the past six months, Families Helping Families of Greater New Orleans, the Louisiana Parent Training and Information Center, has been hosting a STATEWIDE monthly Virtual Youth Hangout. The purpose of the virtual hangout is to build friendships and share stories and resources which is especially needed during times of a pandemic and quarantining. With each passing hangout, there has been a steady increase of participation of youth and young adults.
REGISTER
JANUARY 2022
Free WEBINARS
Date: Wednesday, January 5, 2022 Time: 11:00 am – 12:00 pm Co-Host: FHF GBR Parent Rights in Special Education - Join us for this new interactive online training where we will discuss parent rights in special education. Learning goals involve understanding your special education rights, including: Parental participation; Access to education records; When informed consent is required; Prior written notice; Independent Education Evaluation; Your right to disagree with school; And more! Date: Wednesday, January 5, 2022 Time: 12:30 pm – 1:30 pm Co-Host: FHF NOLA The Basics of Educational Plans: IEPs vs 504 Plans – Students with disabilities will usually qualify for either an IEP or a 504 Plan – but what is the difference and is one better than the other? This training will take you through the eligibility process of both plans, the laws that regulate both, the differences in the plans and parental rights. Date: Thursday, January 6, 2022 Time: 12:00 pm – 1:00 pm Co-Host: FHF NELA Navigating the IEP: Part 1 - Join us for this interactive training as we navigate the different sections of the IEP. In Part 1 of our 4 Part Series, we will cover 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. Date: Saturday, January 8, 2022 Time: 10:00 am – 11:00 am Co-Host: FHF SWLA Top Tips for Effective IEP Meetings - Join us for this training as we go over some of the best IEP Tips for organizing yourself for an effective IEP meeting. We break them down into three steps: before, during, and after the meeting. Implementing our top 5 tips in each of these sections should result in an effective IEP meeting. Date: Monday, January 10, 2022 Time: 11:00 am – 12:00 pm Co-Host: FHF Crossroads All About Tests and Evaluations - In this webinar we will talk All About Assessments and Testing. It will answer some frequently asked questions regarding assessments and testing, when to have your child evaluated and interpreting those assessment results. Date: Tuesday, January 11, 2022 Time: 8:00 pm – 9:00 pm Co-Host: Bayou Land FHF Accommodations vs. Modifications - Meeting after meeting, parents and teachers use the words “accommodation” and “modification” almost interchangeably when discussing IEPs and student needs. If understood and used correctly, these words can greatly impact the success of a child’s educational program. Get answers to these questions and more: How can accommodations and modifications help my child in the general education classroom? How is it included in IEP and which accommodations are provided for state testing? Date: Wednesday, January 19, 2022 Time: 12:00 pm – 1:00 pm Co-Host: FHF Region 7 Navigating the IEP: Part 2 - Join us for this interactive training as we navigate the different sections of the IEP. In Part 2 of our 4 Part Series, we will focus on the instructional plan, which includes the present levels of performance and challenging academic and functional goals for a student with a disability.These will be followed by Accommodations. Date: Thursday, January 20, 2022 Time: 10:00 am – 11:00 am Co-Host: FHF Acadiana What Happens When Parents and School Disagree? Louisiana Special Education Dispute Resolution Options - Join us for this interactive training as we discuss Special Education dispute resolution options when parents disagree. Learning Goals include: Frequently used acronyms; Different informal and formal dispute resolutions options offered by the Louisiana Department of Education; How to request a dispute resolution option; And more! Date: Thursday, January 20, 2022 Time: 12:00 pm – 1:00 pm Navigating the IEP: Part 3 - Join us for this interactive training as we navigate the different sections of the IEP. In Part 3 of our 4 Part Series, we will discuss the Program/ Services and Placement/Consent Sections of the IEP. Date: Monday, January 24, 2022 Time: 12:00 pm – 1:00 pm Navigating the IEP: Part 4 - Join us for this interactive training as we navigate the different sections of the IEP. In Part 4 of our 4 Part Series, we will cover the transition sections of the IEP. Date: Tuesday, February 1, 2022 Time: 8:00 pm – 9:00 pm Parent Rights in Special Education - Join us for this interactive online training where we will discuss parent rights in special education. Learning goals involve understanding your special education rights, including: Parental participation; Access to education records; When informed consent is required; Prior written notice; Independent Education Evaluation; Your right to disagree with school; And more! Date: Thursday, February 3, 2022 Time: 10:00 am – 11:00 am Co-Host: FHF NOLA Louisiana’s Bullying Prevention Law - Join us as we discussLouisiana’s Bullying Prevention law. This law applies to all public school students, regular education and special education. However, there are some significant implications that need to be considered when a student with a disability is involved. Date: Thursday, February 3, 2022 Time: 12:00 pm – 1:00 pm Co-Host: FHF Region 7 Special Education FAQ 1.0 - Join us for this interactive training on the most frequently asked questions about special education and younger children. Learning Goals include: Transitioning from EarlySteps to school services; Evaluation requirements and timelines; Who qualifies for special education; Evaluation requirements for students in private schools; What to do if your child is struggling in school; How to handle bullying in school; And more! Date: Tuesday, February 8, 2022 Time: 11:00 am – 12:00 pm What Happens When Parents and School Disagree? Louisiana Special Education Dispute Resolution Options - Join us for this interactive training as we discuss Special Education dispute resolution options when parents disagree. Learning Goals include: Frequently used acronyms; Different informal and formal dispute resolutions options offered by the Louisiana Department of Education; How to request a dispute resolution option; And more! Date: Thursday, February 10, 2022 Time: 10:00 am – 11:00 am Co-Host: FHF Crossroads Special Education FAQ 2.0 - Join us for this interactive training on the most frequently asked questions about the Individualized Education Program (IEP) Process. Date: Saturday, February 12, 2022 Time: 10:00 am – 11:00 am Co-Host: FHF SWLA The Basics of Educational Plans: IEPs vs 504 Plans – Students with disabilities will usually qualify for either an IEP or a 504 Plan – but what is the difference and is one better than the other? This training will take you through the eligibility process of both plans, the laws that regulate both, the differences in the plans and parental rights. Date: Monday, February 14, 2022 Time: 12:00 pm – 1:00 pm Special Education FAQ 3.0 - Join us for this interactive training on the most frequently asked questions about the transition process from high school to adult life. Date: Wednesday, February 16, 2022 Time: 12:00 pm – 1:00 pm Co-Host: FHF NELA How to Write Ambitious IEP Goals – Join us as we discuss some tips to help you focus on making your child’s IEP as complete as possible to ensure good outcomes. During this webinar, we will discuss measurable annual goals and how they are written, your role as an IEP team member and how to create a results driven IEP. Date: Tuesday, February 22, 2022 Time: 10:00 am – 11:00 am Co-Host: Bayou Land FHF Parent Rights in Special Education - Join us for this interactive online training where we will discuss parent rights in special education. Learning goals involve understanding your special education rights, including: Parental participation; Access to education records; When informed consent is required; Prior written notice; Independent Education Evaluation; Your right to disagree with school; And more! Date: Tuesday, February 22, 2022 Time: 12:00 pm – 1:00 pm Co-Host: FHF Acadiana Top Tips for Effective IEP Meetings - Join us for this training as we go over some of the best IEP Tips for organizing yourself for an effective IEP meeting. We break them down into three steps: before, during, and after the meeting.Implementing our top 5 tips in each of these sections should result in an effective IEP meeting. Date: Tuesday, March 8, 2022 Time: 10:00 am – 11:00 am Co-Host: FHF NOLA Parent Rights in Special Education - Join us for this interactive online training where we will discuss parent rights in special education. Learning goals involve understanding your special education rights, including: Parental participation; Access to education records; When informed consent is required; Prior written notice; Independent Education Evaluation; Your right to disagree with school; And more! Date: Tuesday, March 8, 2022 Time: 12:00 pm – 1:00 pm Co-Host: FHF Region 7 Navigating the IEP: Part 1 - Join us for this interactive training as we navigate the different sections of the IEP. In Part 1 of our 4 Part Series, we will cover 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. Date: Thursday, March 10, 2022 Time: 12:00 pm – 1:00 pm Navigating the IEP: Part 2 - Join us for this new interactive training as we navigate the different sections of the IEP. In Part 2 of our 4 Part Series,we will focus on the instructional plan, which includes the present levels of performance and challenging academic and functional goals for a student with a disability.These will be followed by Accommodations. Date: Saturday, March 12, 2022 Time: 10:00 am – 11:00 am Co-Host: FHF NELA The ABC’s of Extended School Year (ESY) Services - Did you know that data collected during the holidays often determine if your child will qualify for ESY Services?This training provides an overview of the ESY process for children with disabilities including how children qualify and why in many circumstances the school uses the holiday breaks in determining if a child will qualify for ESY. Date: Monday, March 14, 2022 Time: 11:00 am – 12:00 pm Co-Host: FHF Acadiana Getting and Keeping Your First Job – Getting and then keeping a job for someone with a disability can be tough. This training will go over why work is important, challenges for youth, the labor market, disability disclosure, accommodations and more. Date: Tuesday, March 15, 2022 Time: 8:00 pm – 9:00 pm Co-Host: FHF GBR Top Tips for Effective IEP Meetings - Join us for this new training as we go over some of the best IEP Tips for organizing yourself for an effective IEP meeting.We break them down into three steps: before, during, and after the meeting.Implementing our top 5 tips in each of these sections should result in an effective IEP meeting. Date: Wednesday, March 16, 2022 Time: 12:00 pm – 1:00 pm Co-Host: FHF SWLA All About Tests and Evaluations - In this webinar we will talk All About Assessments and Testing. It will answer some frequently asked questions regarding assessments and testing, when to have your child evaluated and interpreting those assessment results. Date: Tuesday, March 22, 2022 Time: 10:00 am – 11:00 am Co-Host: FHF Crossroads What Happens When Parents and School Disagree? Louisiana Special Education Dispute Resolution Options - Join us for this interactive training as we discuss Special Education dispute resolution options when parents disagree. Learning Goals include: Frequently used acronyms; Different informal and formal dispute resolutions options offered by the Louisiana Department of Education; How to request a dispute resolution option; And more! Date:Tuesday, March 22, 2022 Time:12:00 pm – 1:00 pm Navigating the IEP: Part 3 - Join us for this new interactive training as we navigate the different sections of the IEP. In Part 3 of our 4 Part Series, we will discuss the Program/ Services and Placement/Consent Sections of the IEP. Date: Thursday, March 24, 2022 Time: 11:00 am – 12:00 pm Navigating the IEP: Part 4 - Join us for this new interactive training as we navigate the different sections of the IEP. In Part 4 of our 4 Part Series, we will cover the transition sections of the IEP.
What's Going On?
FEBRUARY 2022
MARCH 2022
Savannah is so excited to join the FHF team as the new Coordinator of Grants and Contracts! Originally from Baton Rouge, she now calls New Orleans "home". After receiving her Bachelors from Northwestern State University, she worked for a few years in theatrical stage and production management, traveling to several different theatre companies across the US. Since the pandemic began, she found herself moving back to Louisiana, wanting to focus her energy on uplifting the community she loves so much. Currently, Savannah is pursuing her Masters of Business Administration from the University of Illinois at Urbana-Champaign. When not working or studying, Savannah enjoys yoga, traveling, drinking coffee, and spending time with her cat Max.
OSEP Policy Letter on language development goals for a child with a significant disability and English Learner SUMMARY: Addresses whether IDEA requires inclusion of language development goals in a child’s IEP if the child is an English learner and discusses best practices that districts, schools, and teachers can use to ensure they provide appropriate instruction to English learners with disabilities throughout the school day. The letter also provides several resources that address best practices for developing IEPs and providing instruction for English learners with disabilities.
OSEP Policy Letter on LEA's ability to file a due process complaint when a parent refuses to agree to a change of placement SUMMARY: Addresses whether a local educational agency may file a due process complaint to request a due process hearing against a parent to override the parent’s refusal to consent to a change in the child’s individualized education program or placement. The letter also discusses whether a parent has met IDEA’s exhaustion requirements if a hearing officer determines that a State educational agency is not a proper party to a due process hearing.
FHF of GNO is Excited to Welcome Aboard our Newest Team Member, Savannah Thibodeaux
THE OFFICE OF SPECIAL EDUCATION HAS RECENTLY ISSUED TWO NEW POLICY LETTERS
Our learning opportunities are designed to help empower parents and self-advocates to become brighter and stronger advocates for themselves or their child with a disABILITY. We welcome educators and professionals to attend. ALL OF OUR EVENTS ARE FREE AND OPEN TO THE PUBLIC
If you have any questions regarding our training opportunities, or need accommodations to attend, please reach out to our Director of Training, Jessica Rodrigue at jrodrigue@fhfofgno.org. Accommodations are for Louisiana families only.
While planning for the care of a child with special needs certainly tops the list of emotionally-charged topics, the peace of mind parents gain from a well-designed estate plan is immeasurable. The mere idea wrenches the heart of any parent: if untimely death or disability strikes, who will care for your children? Because no one is immortal, most of us recognize the need for an estate plan, preferably one that appoints a suitable guardian for our children, sees to their financial needs, and avoids probate. In the best of circumstances, it’s a task requiring clear thinking and good legal advice. But when a child has special needs, the challenge intensifies. Before we explore estate planning strategies for parents of children with special needs, let’s look at why all parents need an estate plan. A PAGE FROM OLIVER TWIST "A ward of the court" may sound like something out of the nineteenth century. But that’s precisely what becomes of children who are legally disabled or deceased parents have failed to plan for their care. Unless you’ve created an estate plan that spells out who should assume responsibility for your child, the courts will step in. And that’s true whether you’ve left behind an estate worth millions or nothing at all. When children take center stage in probate court, it’s because the court wants to ensure that a responsible person is supervising their physical needs and financial affairs. The court will appoint a guardian to assume responsibility for your child’s personal care. To oversee your child’s financial affairs, the court will appoint a financial guardian (referred to as a “tutor” in Louisiana). Often, the financial guardian is not one person, but an entity, such as a bank or a professional money management institution. Probate judges have tremendous discretion in whom they may appoint as guardians. So, there’s very little assurance that the judge’s appointments will be the same individuals you would choose. In fact, if qualified family members aren’t available or deemed suitable, the judge may very well appoint professional guardian who may be strangers to you and your child. The guardian will be supervised by the probate court judge assigned to your child’s case. The guardian is usually required to obtain judicial approval before undertaking any significant financial transactions on your child’s behalf. Busy schedules and heavy caseloads often mean that it can take weeks—or even months—before a financial transaction can be reviewed and approved by the supervising judge. That may create devastating delays in providing care and comfort for your child. Because the court is involved in supervising their activities, guardians frequently hire attorneys to help them navigate through the legal system. The fees for these attorneys—as well as the fees charged by the guardian and the probate court itself—all come out of the estate you’ve left behind for your child’s benefit. These expenses leave less money to provide for your child’s care, education, and other requirements. UPPING THE ANTE: PLANNING FOR A CHILD WITH SPECIAL NEEDS Clearly, every parent has a responsibility to plan for the unthinkable. But when the child has physical, emotional or mental disabilities, careful estate planning is even more crucial for three important reasons. First is the simple fact that children with special needs have different needs than children without special needs. Depending on the degree of their needs, they may require specialized treatment that encompasses therapy, housing, education, adaptive equipment, and in-home care, among many other costly services. The need for this care may extend throughout their childhood and last well into adulthood, or even their entire lives. Providing the appropriate degree of care requires careful financial planning. Here’s the second critical reason why parents of a child with special needs require a specialized estate plan: it is the only way to ensure that you can provide for your child without jeopardizing the child’s eligibility for government and private benefit programs. Finally, for parents of children with special needs, estate planning is the only way to protect the child’s financial interests today as well as in the future, when you may no longer be on the scene. THE HORNS OF A DILEMMA It's a painful dilemma that parents of a child with special needs often face: to keep their child eligible for important federal and state benefit programs, the child can have few assets. That leaves parents with a difficult choice: provide a legacy for their special child and hope it will be sufficient for all his needs, or make the child a virtual pauper and retain his or her eligibility for government assistance. In Louisiana, the problem is exacerbated by the fact that Louisiana forced heirship laws mandate that a child with a permanent disability must receive an inheritance from the child’s deceased parent. Fortunately, there is a simple answer within reach of nearly everyone: the Special Needs Trust. HOW THE SPECIAL NEEDS TRUST WORKS The Special Needs Trust allows a parent, grandparent or guardian to provide funds for a child with special needs without disrupting the child’s eligibility for government aid. Setting one up is a fairly simple process. Working with your estate planning attorney, you appoint trustees for your child’s trust. The trustees will manage the assets you transfer to the trust for your child’s benefit. In the event of your disability or death, the trustees will also supervise your child’s finances. During your lifetime, you can serve as trustee and remain in complete control over your child’s finances. Should you die, however, your successor trustees will step in and take care of your child’s finances on your behalf. Unlike the guardian, a probate court might appoint, your successor trustee is someone you know and trust. Relatives or close family friends can be appointed to supervise your child’s finances. To work with financial institutions and manage the estate, you may also want a trusted financial advisor to serve as trustee. As part of setting up your child’s Special Needs Trust, you will provide detailed written instructions to direct your trustees’ activities. By law, trustees must follow these instructions. So you can rest assured your child’s education, housing, and other needs are being taken care of. Best of all, the Special Needs Trust will preserve your child’s eligibility for federal, state and charitable benefit programs. This is accomplished by providing that the funds can only be withdrawn from the Special Needs Trust for purposes other than those covered under the governmental and private benefit programs. PLANNING WHEN THE INDIVIDUAL WITH SPECIAL NEEDS HAS ASSETS One of the most heart wrenching aspects of having a disability is that it may be the result of negligence or preventable error. A doctor’s misdiagnosis, a mistake at the hospital, or a product defect, for example, may create a lifelong impairment for a child. When that’s the case, a lawsuit – and sizable settlement – can be the result. In most cases, the child will be the recipient of the funds. And that can make the child ineligible for government support. When the federal government enacted the Omnibus Reconciliation Act of 1993 (OBRA ’93), one of its intents was to close the door on Medicaid abuse. Legislators realized that taxpayers sometimes deliberately impoverished themselves – and often used trusts to do so – to retain eligibility for Medicaid and other government aid programs. OBRA ’93 resoundingly closed the door on that abuse. In fact, Americans who give away their assets to qualify for government aid can be effectively “blackballed” from federal assistance for a period of time which varies depending on the value of the assets given away. Fortunately, however, OBRA ’93 left the door open for individuals with disabilities who receive damage awards. The law allows them to use their own money to fund a trust very similar to the Special Needs Trust without jeopardizing their eligibility for federal, state and private charitable benefit programs. Going by such names as a “Disability” Trust or “Medicaid Pay-back” Trust, these trusts are similar to the Special Needs Trust with one significant exception. When the disabled individual dies, any money left in his or her trust will be used to repay whatever government assistance that was received during his or her lifetime. Although these trusts are authorized by federal statutes, many states have not as yet officially approved them. That’s why you may need the assistance of an estate planning attorney well versed in this aspect of the law if your child’s situation fits into the scenario described above. BUYER BEWARE: ESTATE PLANNING SHORT-CUTS THAT CAN DERAIL YOUR GOALS While acknowledging the need for estate planning for their children, some parents take short-cuts that create as many problems as they solve. One of the biggest mistakes parents make – and it happens with alarming frequency – is naming their children as beneficiaries of their insurance policies, qualified pension plans, stocks, and other financial instruments. Unfortunately for these parents and their children, neither the financial institutions or the probate courts will hand that money over to minor children. Instead, the money will be turned over to a guardian who will hold the money in trust for the child. If you haven’t appointed a guardian, the probate court will do so for you, and once again, you’ll have little guarantee that those in charge of your child will be the people you would have selected. PLANNING FOR THE UNTHINKABLE As difficult a subject as it might be, all parents owe it to their children to ensure they’re well cared for, come what may. Parents of children with special needs face an even greater imperative to do this essential planning.
A CHILD WITH SPECIAL NEEDS, NEEDS SPECIAL PLANNING
Graham at the Louisiana Baptist All-State Youth Choir
Source: Morrison Law Group. This report reflects the opinion of the American Academy of Estate Planning Attorneys. It is based on their understanding of national trends and procedures, and is intended only as a simple overview of the basic estate planning issues. They recommend you do not base your own estate planning on the contents of this Academy Report alone. Review your estate planning goals with a qualified estate planning attorney. The Academy is a national organization dedicated to promoting excellence in estate planning by providing its exclusive Membership of attorneys with up-to-date research on estate and tax planning, educational materials, and other important resources to empower them to provide superior estate planning services.
The Child Tax Credit in the American Rescue Plan provides the largest Child Tax Credit ever and historic relief to the most working families ever – and as of July 15th, most families are automatically receiving monthly payments of $250 or $300 per child without having to take any action. The Child Tax Credit will help all families succeed.
The American Rescue Plan increased the Child Tax Credit from $2,000 per child to $3,000 per child for children over the age of six and from $2,000 to $3,600 for children under the age of six, and raised the age limit from 16 to 17. All working families will get the full credit if they make up to $150,000 for a couple or $112,500 for a family with a single parent (also called Head of Household). Major tax relief for nearly all working families: $3,000 to $3,600 per child for nearly all working families The Child Tax Credit in the American Rescue Plan provides the largest child tax credit ever and historic relief to the most working families ever. $3,000 per child 6-17 years old $3,600 per child under 6 years old All working families will get the full credit if they make up to $150,000 for a couple or $112,500 for a family with a single parent (also called Head of Household) Automatic monthly payments for nearly all working families If you’ve filed tax returns for 2019 or 2020, or if you signed up to receive a stimulus check from the Internal Revenue Service, you will get this tax relief automatically. You do not need to sign up or take any action. Advancing your tax relief: Normally, tax relief for the year only comes the following year when you file your taxes, no matter how much you need it now. This year, most families started getting the money in July. Monthly payments starting in July: For the first time, people will received the Child Tax Credit in monthly payments. For every child 6-17 years old, families got $250 each month, and for every child under 6 years old, families will get $300 each month. The 80% who get their refunds from the IRS through direct deposit will continue to get these payments in their bank account on the 15th of every month until the end of 2021. People who don’t use direct deposit will receive their payment by mail around the same time. President Biden’s Build Back Better agenda calls for extending this tax relief for years and years The new Child Tax Credit enacted in the American Rescue Plan is only for 2021. That is why President Biden strongly believes that we should extend the new Child Tax Credit for years and years to come. That’s what he proposes in his Build Back Better Agenda. Easy sign up for low-income families to reduce child poverty If you don’t make enough to be required to file taxes, you can still get benefits. The Administration collaborated with a non-profit, Code for America, who created a non-filer sign-up tool that is easy to use on a mobile phone and also available in Spanish. The deadline to sign up for monthly Child Tax Credit payments this year was November 15. If you are eligible for the Child Tax Credit but did not sign up for monthly payments by the November 15 deadline, you can still claim the full credit of up to $3,600 per child by filing your taxes next year.
The Child Tax Credit
The IRS will not email you asking you to provide or verify financial information to obtain the monthly Child Tax Credit payments. Stay alert and learn to recognize a phishing scam: http://irs.gov/phishing
Supportive Decision-Making for Adults with Disabilities The PA Assistive Technology Foundation has produced a webinar series called “Money Talks.” This webinar, which features simultaneous ALS translation and closed captions, covers the different ways in which people with disabilities can get help in decision-making about health care and money.
MAKING YOUR POINT
What does money mean to you? Banking executive Thasunda Duckett shares six simple (but BIG) ideas about how to minimize shame around money, have honest conversations about it, and begin to save. Get your vision board ready!
TOOLS THAT WORK
When youth and young adults with disabilities have the financial skills and knowledge they need, they can achieve independence, control, and autonomy over their own lives. Financial wellness means having financial security and financial freedom of choice, both now and in the future. We are going to explore the intersection of public benefits, earned income and personal finance, and the complex balance needed to achieve and preserve financial wellness.
Public Benefits and Personal Finance
Personal Futures Planning Q: What is Personal Futures Planning (PFP)? A: PFP, also called Person-Centered Planning, is a team approach for planning the next stage of an individual’s life. It focuses on what an individual can do—their strengths and preferences—rather than what they cannot do. The process uses discussions with the family and people at the center of the individual’s life to drive the planning, rather than relying on written reports by professionals. Q: Who is on the team? A: The team usually includes a person’s family and teacher or rehabilitation worker, as well as friends, neighbors, and other significant people in the person’s life. Q: What does the team do? A: The team gathers together with the person to focus on the future, with an emphasis on what they like and what they can do, rather than on a pre-defined outcome. Click here to access The Personal Futures Workbook. Financial Wellness Toolkit We love the financial wellness toolkit developed by the National Disability Institute. Click here to view and download NDI's Financial toolkit. Resource Mapping Got 10 minutes? Check out the Resource Mapping video from National Disability Institute and Hands-on-Banking® Watch NDI's Resource Mapping video now. Money Rules to Live By Credit cards can be a terrific tool, but they can also create problems if not used effectively. This two-page tool is designed to help young adults make decisions about how and when to use credit cards. View and download the PDF for young adults on making credit card decisions now.
PERSPECTIVES
continued on p.42
A CLOSER LOOK
Here we take a closer look at two important programs that can lead to increased financial independence for people with disabilities receiving SSI. A Plan for Achieving Self Support (PASS) is a Supplemental Security Income (SSI) work incentive that allows an individual “to set aside money and/or things he or she owns to pay for items or services needed to achieve a specific work goal.” The PASS program lets individuals set up a long-term work goal, which can include beginning a new career, starting a business, or returning to school to finish a degree. All of the expenses associated with achieving the work goal can be included in the PASS program. Once the plan is approved, an individual can set aside money to pay for the work plan without having those savings reduce their eligibility amount for SSI. By setting aside money, applicants can pay for specific services or items that may help them eventually get back to work. Learn more about PASS here.
Social Security's Ticket to Work Program is a free and voluntary program available to people ages 18 through 64 who are blind or have a disability and who receive Social Security Disability Insurance (SSDI) or Supplemental Security Income (SSI) benefits. The program increases the financial independence and self-sufficiency of beneficiaries with disabilities, and reduces (and whenever possible eliminates) reliance on disability benefits. The program does this by offering expanded choices to eligible people with disabilities when they seek service and supports to enter, re-enter, and/or maintain employment. Under this program, people who are receiving monthly benefit payments can sign up with an approved service provider of their choice. This can be an Employment Network (EN) or a State Vocational Rehabilitation (VR) agency. The EN/State VR agency will coordinate and provide appropriate services to help the beneficiary find and maintain employment. These services may be training, career counseling, vocational rehabilitation, job placement, and ongoing support services necessary to achieve a work goal. While participating in the program, beneficiaries can get the help they need to safely explore their work options and find the job that is right for them without losing their benefits. Beneficiaries also can use a combination of work incentives to maximize their income until they begin to earn enough to support themselves. Therefore, the individual can: Go to work without automatically losing disability benefits; Return to benefits if he or she has to stop working; Continue to receive healthcare benefits; and Be protected from receiving a medical Continuing Disability Review (CDR) while using the ticket and making the expected progress with work or educational goals. While both PASS and Ticket to Work are intended to help SSI recipients return to work, effectively reducing their dependence on Social Security benefits, there are some differences between the two programs. Anyone who gets continued p.33 SSI is eligible for Ticket to Work, but the PASS program requires an application and approval process. Additionally, Ticket to Work targets shorter-term, work-related goals, while PASS focuses on more complex and long-term work goals. Ticket to Work is a voucher program in which people receiving Social Security Disability benefits are given a “ticket” that can be presented to an eligible Employment Network (EN) service provider. EN providers are organizations or individuals who can help you get the training, education, or other support services you need to reach a work-related goal. The program is designed to give SSDI and SSI recipients access to additional EN resources without dipping into their own money to pay for the services needed. Click here to learn more about Ticket to Work.
Andrew Zainey is enjoying God's Special Children's Mass with his mother, Joy, and his nephew at St. Francis Xavier Church.
Cutie in the bell choir at God's Special Children's Mass.
Archbishop Gregory Aymond with J.D. Blue at God's Special Children's Mass.
Finding Grace
by Sharon Blackmon
Jay and Joy Zainey found themselves in that position after their youngest son was born. They had always attended mass as a family, but when Andrew started making noises and becoming disruptive, they didn’t feel comfortable. After several years of trying different services or using the cry room, they decided to start a mass where everyone is welcome, regardless of their abilities or outbursts or meltdowns. In October they celebrated 17 years of “God’s Special Children Mass,” and Archbishop Gregory Aymond officiated. He has been the principal celebrant of the Anniversary Mass through the years since he became Archbishop, and has celebrated baptisms, given out First Communion and confirmed numerous people with special needs. “Any time I am able to celebrate Mass with God’s Special Children, it is a joyous occasion for me,” reports Archbishop Aymond. “To see families together celebrating at the Eucharistic table and everyone eagerly participating is a blessing for all in attendance.” “We had two to make their First Holy Communion and four to make their Confirmation during that mass,” explains Joy Zainey. She went on to say that initially people with special needs could not receive the sacraments, but thankfully that has changed. As recently as last December Pope Francis weighed in on the subject through a declaration: “Special attention should be given to disabled people who have not yet received the Sacraments of initiation, meaning Baptism, Confirmation and First Communion. … No one should be excluded from the grace of the Sacraments.” As he strives to make New Orleans churches friendlier places for people of all abilities, Archbishop Aymand echoes the Pope’s sentiment: “It is my hope that our Catholic churches continue to work to be welcoming places that encourage full and active participation in the life of the parish for all regardless of ability.” Father Mike Mitchell is the priest who celebrates most of the God’s Special Children masses. He makes the homily interactive for participants, using props and manipulatives to reach more of his attendees. There is also a handbell choir open to everyone, and those congregants who read are offered opportunities to read scripture during the service. The mass is held on the first Sunday of every month at 2pm at St. Francis Xavier Church on Metairie Road, and everyone is welcome. “We often have congregants who have no disability and no family member with a disability, but they come because they enjoy it. It’s a very uplifting time for everyone,” says Joy. “And many who come aren’t even Catholic.” Flo Hammond is another parent who is passionate about faith and finding a place for her family to worship together. “When we first moved to Louisiana 12 years ago,” Flo states, “we visited several churches and were not received well at some because of the negative reactions to my son’s stimming. Because we are a family with faith as our core belief, we looked for a positive place of worship that would embrace our family’s differences.” They found that place at Our Savior’s Church in Opelousas. Flo describes her son Matthew then as a “typical kid with autism.” He had mannerisms and behaviors that stood out and unfortunately set him apart from typical peers. Our Savior’s Church, where they still attend, was very interested in having a diverse children’s ministry, and welcomed Matthew and his family. Matthew loves church. He enjoys the praise and worship portion of the service, and he uses his Bible and takes notes during the sermon. When he became interested in being baptized as a teen, he and his parents talked to the youth pastor and Matthew was baptized. When Matthew was required to have service hours in high school, he became a greeter with his mom. “He didn’t much like shaking hands at first, but he got used to it and then he liked it,” Flo remembers. He liked greeting so much that he became a greeter at his new church in Thibodaux, where he now attends Nicholls State University. He attended a new members class where he was asked where he would like to serve, and he chose the greeter ministry. Church is so important to Matthew, he and his parents arranged for him to go to church with the parents of friends who live in Thibodaux when he went off to college. And Thibodaux Family Church has been a good fit. “He came home on weekends a lot at first,” says Flo of 21-year-old Matthew. “But he doesn’t come home as often now. He has a lot to do on the weekends.” Mallory Brown, whose story was featured in our last edition of Exceptional Times, faced a different challenge when looking for a congregation for her and her two children, Maddie and Blake: Maddie is deaf. They have now become fixtures at Purpose Church in Baton Rouge, where the kids are part of Purpose Kids Ministry. “I want every person to feel welcome in the house of God,” says Chad Dinkel, the pastor of Purpose Church. Since the church’s founding in 2018, Dinkel has been intent on building a church that is a comfortable place for everyone, regardless of their abilities or needs. When a member whose parents are both deaf approached him about interpreting for worship services, he says he suddenly became aware of the fact that this whole group of people was not being reached. Since then they have started reaching out to the School for the Deaf and other schools in Baton Rouge to get the word out that they offer ASL interpreting for services. Stuart Simon is a 35-year-old self-advocate and member of Touro Synagogue. Autism seems to be just another of Stuart’s many talents: he holds a Master of Music in Music History and a Master of Library and Information Sciences from the University of Wisconsin at Milwaukee, and he works at the LSU Human Development Center doing web development. Stuart moved from St. Louis when he was eight years old and says the smaller, closer-knit Jewish community in New Orleans enticed his mother. As the time for his bar mitzvah approached, he started memorizing by rote the Hebrew prayers. In a Reform Synagogue such as Touro, the boy is called up to read from the Torah and recite prayers, and Stuart wanted to be prepared. He convinced his mom to enroll him in Hebrew School, where he not only learned the prayers but also the meaning behind the prayers. “When I started blossoming in my Jewish learning, they started being really nice to me,” Stuart recalls. As a child he attended Jewish summer camps with peers, and now he is active in the synagogue choir. Being part of the Jewish community at Touro has always been a very important part of his life. Camp Able NOLA is a dignity-driven ministry of St. Andrew’s Episcopal Church in New Orleans that serves children and adults with special needs and their families. Camp Able NOLA consists of three main pieces: a summer camp at the end of July; a bimonthly youth group that is comprised of a delightful mix of neurotypical and neurodiverse youth ages ten to thirty; and quarterly parties that are facilitated by the Newman Camp Able Club, a student group at Isidore Newman School that avidly supports Camp Able NOLA. “To say that St. Andrew’s Episcopal Church has benefitted and learned from and loved greater because of Camp Able NOLA would be an understatement,” declares Taylor Cheek, Youth Group Director at St. Andrew’s. Children and youth from all over the Greater New Orleans area attend mass and activities at Camp Able NOLA. One of the ministries of Brookwood Baptist Church in Shreveport is GRACE Respite. GRACE, which is an acronym for God Reaches All Children Everywhere, is a monthly experience for children with special needs and their siblings that allows parents to take a break and have a night out. It is volunteer-driven and is usually held on Friday nights from 6-9 pm. GRACE Buddies is Brookwood’s program for partnering with children who may need extra support to engage in children’s activities at the church. A one-on-one volunteer provides structure and attention for any child who needs assistance to participate. Brookwood has also added a Sensory Room, which is a safe place where children who struggle with sensory experiences can go to take a break and calm themselves. The room is equipped with soft lights, soft music, a mini trampoline and other activities designed to help the body settle. Oftentimes going to church isn’t easy. Finding a place suitable for all members of the family can be an exhausting task, and many simply give up. For a special-needs parent, even on a good day it can be tough to keep it together through a worship service. Sometimes parents get tired of the looks, the whispers, the questions; we just want to be someplace welcoming and familiar, where we and our children are accepted and loved. Those places are out there. And finding them makes it all worth the struggle.
Having a local place of worship is important to people of faith. Finding a church, synagogue or mosque that offers a comfortable place for their family to worship and serve is essential for believers. The quest becomes more complicated though, when a member of the family has an obvious disability or special healthcare needs.
Standing in front of her seat near the stage, ten-year-old Maddie lifts her hands upward as the musicians lead worship at Purpose Church in Baton Rouge. She smiles broadly as she feels the music that she can’t hear.
Matthew Hammond is all smiles as he is seated in the car on his way to church.
"Because we are a family with faith as our core belief, we looked for a positive place of worship that would embrace our family’s differences.” Flo Hammond
Returning To School Must Include a Reinvestment in Section 504 Plans
Authors’ note: The disability community is rapidly evolving to using identity-first language in place of person-first language. This is because it views disability as being a core component of identity, much like race and gender. Some members of the community, such as people with intellectual and developmental disabilities, prefer person-first language. In this column, the terms are used interchangeably.
As schools grapple with returning to in-person learning, the education system must account for and prioritize the unmet needs of students with disabilities. While students with disabilities are entitled to services and supports in school under the Individuals with Disabilities Education Act (IDEA) and the Rehabilitation Act, they still face barriers in school that lead to educational disparities—issues that have only been compounded by the pandemic. Prior to COVID-19, students with disabilities already had lower graduation rates and college enrollment than their nondisabled peers. But during the pandemic, learning for all students took a hit. According to McKinsey & Company, student achievement data show that students have fallen four and five months behind in reading and math, respectfully, as a result of the pandemic. For students with disabilities, however, the pandemic’s effects have been even more pronounced: One study 504 p.39 found that during the 2020-21 school year, students with disabilities had higher rates of incomplete assignments and course failure than their nondisabled peers. Families of students with disabilities have also reported disruptions in their education services. In a survey conducted in May 2020, only 20 percent of parent respondents said their children were receiving the services in their Individualized Education Program (IEP), an IDEA program that helps identify special education services and supports for disabled students; meanwhile, 39 percent of parents reported receiving no services. While not conclusive, school districts have also reported that students with disabilities are disproportionately failing classes compared with their peers. Schools should better utilize Section 504 of the Rehabilitation Act to fully support students who do not qualify for IEP plans as they return to classroom settings. Section 504 of the Rehabilitation Act of 1973, commonly referred to as a “504 plan,” prohibits discrimination against people with disabilities in federally funded institutions and is typically reserved for students who do not qualify for special education under IDEA but have conditions that interfere with learning. Section 504 has a broader definition of disability than IDEA and may include students who have chronic medical conditions, psychological conditions, or other learning disabilities. Moreover, unlike IDEA, Section 504 does not have a specific funding source to support students, which means that it’s up to states and school districts to implement. This can lead to vast disparities in services, negatively affecting multi-marginalized students in particular. This column discusses inequities in Section 504 plans and provides recommendations to overcome these challenges. To help meet the needs of students with disabilities as well as those from multi-marginalized backgrounds, policymakers must develop policies to 1) help increase knowledge about services and supports under 504 plans, 2) increase proactive enforcement measures, and 3) fund counselors and other support services. Section 504 inequities Currently, the use of 504 plans is highly inequitable. In particular, students of color and students in poorer school districts have less access to 504 plans. In 2008, Congress made efforts to enhance access to Section 504 services; however, data suggest that there has been no noticeable increase in the number of children receiving Section 504 plans and supports. In addition, disparities among racial and socioeconomic status have continued. For example, according to a study released in 2014, white students are more than twice as likely than Black or Hispanic students to have a 504 plan. Furthermore , male students are almost twice as likely as female students to have 504 services. Data also suggest that 504 plans are easier to obtain at schools that are wealthier and whiter. Specifically, in Arizona, students are half as likely to have a 504 plan if they attend the poorest district schools, while white schools are three times more likely to have 504 plans than schools with at least 75 percent students of color. Another study examining students with attention-deficit/hyperactivity disorder (ADHD) found that children living in poverty had the lowest odds of having a 504 plan. Meanwhile, a New York Times article—using data from the U.S. Census Bureau and Department of Education—found that the average rate for 504 plans was 5.8 percent for schools in the top 1 percent of medium household income and only 1.5 percent for schools in the bottom 1 percent of household income, compared with the national average of 2.7 percent. These disparities can be attributed to the advantages of families that can spend the time and money advocating for 504 services, securing professional help, and paying for psychoeducational testing. Furthermore, if a school does not evaluate the needs of a student suspected of requiring a 504 plan, support may only be provided after parental intervention or litigation, which also takes time and money. These disparities indicate a racial and economic gap in services that needs to be remedied. While some may highlight recent scandals whereby students or their parents were accused of using unfair diagnoses to gain academic advantages, these stories actually represent the inequities in the education system and the difficulties that disabled students from low-income backgrounds face in attempting to access services. The real focus should be on granting greater access to educational testing and 504 services for all. Education support and services should not be based on race or wealth. Section 504 and mental health Even before the pandemic, students faced significant barriers to receiving mental health supports. Roughly 1 in 5 children have a mental, emotional, or behavioral disability, but only 20 percent of these children receive care from specialized providers. Another study found that only half of children with emotional or behavioral conditions receive medication or psychological services, and over the course of a year, only 7.4 percent report visiting a mental health professional. The lack of local providers, long travel times, long waiting lists, cost, and insurance coverage requirements all contribute to the inadequate support for families trying to access child mental health services. Students are coming back to schools with a higher likelihood of mental health issues. Black, Latino, and Indigenous students face additional barriers when receiving mental health support. Obstacles to quality access include lack of adequate prevention programs, socioeconomic disadvantages, stigma attached to mental health, and a lack of culturally competent services. In particular, Asian Americans are the least likely of any racial group to use mental health services, despite the fact that this demographic is seeing a significant rise in mental health issues, especially among young adults. The pandemic has only exacerbated the problem. Across the U.S. population, mental health issues have nearly doubled during the pandemic. There have been countless stories as well as new research suggesting a rise in mental health and substance use issues for children and young adults, which puts already underfunded programs in worse financial situations. Indeed, students have faced significant trauma as a result of the pandemic, with millions of children 504 p.49 having lost parents, grandparents, and caregivers to COVID-19. Moreover, racial tensions amid the pandemic have particularly affected mental health in Black and Asian American communities. In essence, students are coming back to schools with a higher likelihood of mental health issues. Policymakers need to make significant policy changes to support these students’ recovery and not create further traumatization. Policymakers need to make significant policy changes to support students’ recovery and not create further traumatization. Recommendations 504 plans are not being provided equitably, particularly for low-income students of color. That must change. The policy recommendations below represent a starting point: Eliminate the knowledge gap Eliminating the disparities in obtaining 504 services can start with education. Many families simply do not know the resources that are available if a student has a disability, how to access those services, or their rights and protections under the law. Increasing targeted funding to the Center for Parent Information and Resources (CPIR) could improve outreach to marginalized communities—including linguistic minorities—by providing culturally relevant information in communities’ native languages. Increase proactive enforcement The U.S. Department of Education’s Office for Civil Rights is tasked with enforcing Section 504; however, it rarely issues penalties or even launches compliance investigations. Since 1984, the office has only initiated about 200 investigations against educational institutions accused of failing to provide services and supports required under Section 504. To take some of the onus off parents, policymakers must provide legal ability for state education departments to help monitor and enforce 504 law as they monitor IDEA. Fund counselors and other support services Instead of investing in punitive resources such as resource officers, schools should invest in counselors, school therapists, psychologists, and other mental health supports. In addition, schools should prioritize and recruit diverse specialists and supports that are representative of their student body. When students see people who represent their identities, they are more likely to feel satisfied with treatment and the outcome of those services. Moreover, adding federal funding tied to 504 implementation may help alleviate the burden on schools that rely on low-income community tax revenue. States can also choose to expand Medicaid in schools to support Medicaid-eligible mental health services. 504 plans are not being provided equitably, particularly for low-income students of color. That must change. Conclusion As students return to school—whether in person or online—school systems must be ready to provide services and supports. Moreover, they must do so equitably, particularly addressing the needs of disabled students of color and lower-income students. Yet Section 504 plans are only one part of the problem and solution; to truly combat the lack of resources that disabled students have faced throughout—and before—the pandemic, as well as the growing mental health crisis, policymakers must fully fund and support enforcement efforts under IDEA and Section 504. In addition, local officials and schools must increase funds for Section 504 and mental health services.
“To say that St. Andrew’s Episcopal Church has benefitted and learned from and loved greater because of Camp Able NOLA would be an understatement,” Taylor Cheek
The pandemic has highlighted the need for increased funding and support for 504 plans, as students of color and students from low-income households are continuously left behind.
continued on p.48
Authors: Megan Buckles, Mia Ives-Rublee, Kelly Moh
2019-09 Hannah & Gang Freshman First Down Run
2019-09 Hannah Freshman First Down Run
Hannah 2020 UL Homecoming
Whether you're looking for a job or already have one, if you're one of more than 50 million U.S. adults who live with a mental illness, the workplace can be a challenging environment. Searching for the right job can take several tries. Once in the workforce, you may worry about being treated differently by an employer or coworker or fear losing your job if you choose to disclose your disability. The good news is that you have rights. For three decades, the Americans with Disabilities Act (ADA) has opened doors for people with disabilities, protecting them from discrimination in all areas of their daily lives, including the workplace. Whether you have an observable disability or an invisible one, this law helps you access the same employment opportunities and benefits as individuals without disabilities. Not only are you protected from discrimination based on your disability, you may also be able to seek reasonable accommodations so that you can participate in the job application process, perform the essential functions of a job or enjoy the benefits and privileges of employment equal to those enjoyed by employees without disabilities. Mental Health in the Workplace Your mental health, including emotional, psychological, and social well-being, can affect how you think, feel and act. Your mental health also affects your responses to stress and how you interact with others at work. Similar to people with physical disabilities and health conditions, people with mental health conditions may need support and can request reasonable accommodations to help them succeed in the workplace. But how do you know if your mental health condition qualifies as a disability protected by the ADA? According to the National ADA Network, a disability is any physical or mental health impairment that significantly limits one or more of your major life activities. If your mental illness makes it difficult for you to perform important tasks at work, accommodations such as adjusting your work environment or the way you perform a task can allow you to better perform the essential functions of the job. For example, someone navigating symptoms of post-traumatic stress disorder (PTSD) may struggle with anxiety and have difficulty focusing and making decisions at work. This can be stressful because they never know when their symptoms will show up. To help manage such stress, workplace accommodations could include requesting written instructions to help address memory issues or modifying the break schedule to accommodate a therapy appointment. Other examples of workplace accommodations for individuals with mental health conditions include: Allowing noise-cancelling headphones to help reduce distracting noises Having access to apps for anxiety and stress Using wall planners or a color-coded system to help with time management and managing confusion Discussing flexible scheduling or options for working from home How Can I Request Reasonable Accommodations? In order to receive an accommodation, you'll need to discuss your disability with your employer, but talking about disclosure doesn't have to be difficult. If you have a mental health condition and want to work, knowing your symptoms will help you communicate your needs. To have a productive discussion with your employer or future employer, think about: The part(s) of your job you're having difficulty with due to your mental illness How your disability makes it difficult for you to perform these tasks Your recommendations for potential solutions The ADA requires employers to provide reasonable accommodations for employees with disabilities unless doing so would cause the employer significant difficulty or expense. When you decide to disclose your disability to your employer, keep it simple. You don't have to explain every detail. You can talk to your supervisor, HR representative or ADA coordinator and also put your request in writing to document your request. If you have additional concerns about mental health support and maintaining employment while coping with mental illness, find out if your employer has an employee assistance program (EAP) that allows you access to mental health professionals and counseling. EAPs also offer tools for identifying triggers, tips for stress management and general coping skills. EAPs are usually offered at no cost to you as the employee; however, there may be a limited number of sessions available. Source: Ticket to Work
Concerned About Workplace Discrimination? Discrimination can come in many forms and people with disabilities are vulnerable to workplace discrimination – both when applying for a job and once they have a job. Ticket Program service providers, like State Vocational Rehabilitation (VR) agencies, Employment Networks (EN) and Protection and Advocacy for Beneficiaries of Social Security (PABSS) offer resources that may be helpful to you. Here are other resources that may be able to help if you believe you have been discriminated against in the workplace: U.S. Equal Employment Opportunity Commission (EEOC) (https://www.eeoc.gov) Job Accommodation Network (https://askjan.org)
Employment Supports for People with Invisible Disabilities
SSA Red Book SSA’s Red Book is a great reference about the employment-related provisions of the Social Security Disability Insurance (SSDI) and the Supplemental Security Income (SSI) programs. It’s an especially helpful resource for educators, advocates, rehabilitation professionals, and counselors who serve people with disabilities. Click here to access the SSA Red Book in English Click here to access the SSA Red Book in Spanish Your Money, Your Goals: Focus on People with Disabilities The Consumer Financial Protection Bureau produced “Your Money, Your Goals: Focus on People with Disabilities.” The 66-page guide contains information, tips, and tools based on insights from people with disabilities. It is centered around the belief that everyone has the right to control their money and make their own financial decisions. Click here to access “Your Money, Your Goals”
RESOURCES
Source: Science and tech news, YouTube
Source: RAISE, the National Resources for Access, Independence, Self-Advocacy and Employment is a user-centered technical assistance center that understands the needs and assets of the RSA-PTIs, coordinates efforts with the Technical Assistance provided by PTI centers and involves RSA-PTIs as key advisors and partners in all product and service development and delivery.
Through a partnership with a venerable name in the world of assistive technology, people with disabilities can now control Apple’s iPad using nothing more than their eyes. Tobii Dynavox said this week that it is launching an add-on device that will bring its eye-tracking technology to the iPad. Known as the TD Pilot, the certified Apple accessory attaches to a standard iPad to seamlessly integrate eye-tracking capabilities into all of the typical features of the tablet. In addition, TD Pilot includes TD Talk, an eye-controlled app to generate speech, as well as TD Snap, which offers symbols for users to select in order to communicate. To stay up to date with latest top stories, make sure to subscribe to this YouTube channel by clicking the button above this video! TD Pilot offers powerful speakers, an extended battery, an “ultra-rugged design” and can be mounted to a wheelchair, Tobii Dynavox said. The eye-gaze technology works even in bright light outside and there is a partner window on the backside of the device so that words written out using eye gaze can be seen by others a user is communicating with.
Apple's iPad Gets Assistive Technology Boost
“Many communities across the country are seeing growing numbers of people with disabilities and older adults experiencing homelessness. Thanks to the American Rescue Plan, HUD is able to provide communities with historic new housing resources needed to bring many more people experiencing homelessness off the streets and out of shelters and into permanent homes.” ~ HUD Secretary Marcia L. Fudge.
HHS and HUD announce expanded partnership, new Housing and Services Resource Center
On December 13, 2021, the U.S. Department of Health and Human Services (HHS) and the U.S. Department of Housing and Urban Development (HUD) announced the expansion of a partnership - PDF established earlier this year to improve access to affordable, accessible housing and the critical services that make community living possible. The partners also announced the launch of a national Housing and Services Resource Center (HSRC) as the hub of this coordinated federal effort. Today’s announcement builds on President Biden’s Executive Order establishing a government-wide commitment to advancing equity, including for people with disabilities, as well as additional commitments announced in July on the anniversary of the Americans with Disabilities Act. Within HHS, this partnership is led by the Administration for Community Living. It includes the Centers for Medicare & Medicaid Services, the Substance Abuse and Mental Health Services Administration, and the Office of the Assistant Secretary for Planning and Evaluation. Many people with disabilities, older adults, and people experiencing homelessness need help obtaining housing that is both affordable and accessible. Many also need access to community-based supportive services – such as behavioral health services, personal care assistance, tenancy supports, accessible transportation, and home-delivered meals – in order to live successfully and stably in the community. Without housing and services that meets their needs, they are often left with no choice but to live in facilities, like nursing homes and homeless shelters, or on the streets. In every state and community, there are a number of entities and programs helping people access housing and supportive services. Too often, however, the housing and service systems are siloed. On the other hand, stronger collaboration between these systems would enable states and communities to coordinate resources to help older adults, people with disabilities and people experiencing homelessness achieve housing stability, live with dignity and independence in the community, and avoiding homelessness and costly institutional care. “COVID-19 has been particularly devastating for people who live in nursing homes and other congregate settings. Expanding community living options is critical to advancing health equity,” said HHS Secretary Xavier Becerra. “That’s why the Biden-Harris Administration is investing more today in home and community-based services, behavioral health, and affordable and accessible housing. Our partnership with HHS and HUD comes at a pivotal moment, and we’re going to keep up the pace as we help communities build back better.” “Many communities across the country are seeing growing numbers of people with disabilities and older adults experiencing homelessness. Thanks to the American Rescue Plan, HUD is able to provide communities with historic new housing resources needed to bring many more people experiencing homelessness off the streets and out of shelters and into permanent homes,” said HUD Secretary Marcia L. Fudge. “This new joint HHS and HUD center will help communities break down the silos and coordinate the provision of services with housing to ensure that these new resources reach our most vulnerable homeless neighbors.” The Housing and Services Resource Center will implement a federally coordinated approach to providing resources, program guidance, training, and technical assistance to public housing authorities and housing providers; state Medicaid, disability, aging and behavioral health agencies; the aging and disability networks; homeless services organizations and networks; health care systems and providers; and tribal organizations. The Housing and Services Resource Center also aims to facilitate state and local partnerships between housing and service systems and assist communities in leveraging new housing and service resources available through the American Rescue Plan and, when it passes, through the Build Back Better Act. The Housing and Services Resource Center website brings together --for the first time -- a wide variety of federal resources and guidance on both housing and services that support community living, including Medicaid-funded home and community-based services, behavioral health supports, vouchers, and other housing programs. The HSRC website also provides information about the organizations in the respective networks and examples of successful partnerships and strategies for more effectively and efficiently connecting people to affordable, accessible housing and the services provided in the home or community to support independent living. Through the Housing and Services Resource Center, HHS and HUD will offer webinars, develop and disseminate new technical assistance resources, facilitate peer-to-peer learning and launch a learning collaborative.
Partnership will improve access to affordable, accessible housing and supportive services
Gov. Edwards & Patricia Ehrle
Gov. Edwards & Amy Dawson
GOLD Awards p.13
Gov. Edwards & Owen Delatte
Gov. Edwards & The Barthe Family
continued on p.63
You Are Not Alone
If you have recently learned that your child has a developmental delay or a disability (which may or may not be completely defined), this message may be for you. It is written from the personal perspective of a parent who has shared this experience and all that goes with it.
When parents learn about any difficulty or problem in their child’s development, this information comes as a tremendous blow. The day my child was diagnosed as having a disability, I was devastated—and so confused that I recall little else about those first days other than the heartbreak. Another parent described this event as a “black sack” being pulled down over her head, blocking her ability to hear, see, and think in normal ways. Another parent described the trauma as “having a knife stuck” in her heart. Perhaps these descriptions seem a bit dramatic, yet it has been my experience that they may not sufficiently describe the many emotions that flood parents’ minds and hearts when they receive any bad news about their child. Many things can be done to help yourself through this period of trauma. That is what this paper is all about. In order to talk about some of the good things that can happen to alleviate the anxiety, let us first take a look at some of the reactions that occur. Common Reactions On learning that their child may have a disability, most parents react in ways that have been shared by all parents before them who have also been faced with this disappointment and this enormous challenge. One of the first reactions is denial—“This cannot be happening to me, to my child, to our family.” Denial rapidly merges with anger, which may be directed toward the medical personnel who were involved in providing the information about the child’s problem. Anger can also color communication between husband and wife or with grandparents or significant others in the family. Early on, it seems that the anger is so intense that it touches almost anyone, because it is triggered by the feelings of grief and inexplicable loss that one does not know how to explain or deal with. Fear is another immediate response. People often fear the unknown more than they fear the known. Having the complete diagnosis and some knowledge of the child’s future prospects can be easier than uncertainty. In either case, however, fear of the future is a common emotion: “What is going to happen to this child when he is five years old, when he is twelve, when he is twenty-one? What is going to happen to this child when I am gone?” Then other questions arise: “Will he ever learn? Will he ever go to college? Will he or she have the capability of loving and living and laughing and doing all the things that we had planned?” Other unknowns also inspire fear. Parents fear that the child’s condition will be the very worst it possibly could be. Over the years, I have spoken with so many parents who said that their first thoughts were totally bleak. One expects the worst. Memories return of persons with disabilities one has known. Sometimes there is guilt over some slight committed years before toward a person with a disability. There is also fear of society’s rejection, fears about how brothers and sisters will be affected, questions as to whether there will be any more brothers or sisters in this family, and concerns about whether the husband or wife will love this child. These fears can almost immobilize some parents. Then there is guilt—guilt and concern about whether the parents themselves have caused the problem: “Did I do something to cause this? Am I being punished for something I have done? Did I take care of myself when I was pregnant? Did my wife take good enough care of herself when she was pregnant?” For myself, I remember thinking that surely my daughter had slipped from the bed when she was very young and hit her head, or that perhaps one of her brothers or sisters had inadvertently let her drop and didn’t tell me. Much self-reproach and remorse can stem from questioning the causes of the disability. Guilt feelings may also be manifested in spiritual and religious interpretations of blame and punishment. When they cry, “Why me?” or “Why my child?”, many parents are also saying, “Why has God done this to me?” How often have we raised our eyes to heaven and asked: “What did I ever do to deserve this?” One young mother said, “I feel so guilty because all my life I had never had a hardship and now God has decided to give me a hardship.” Confusion also marks this traumatic period. As a result of not fully understanding what is happening and what will happen, confusion reveals itself in sleeplessness, inability to make decisions, and mental overload. In the midst of such trauma, information can seem garbled and distorted. You hear new words that you never heard before, terms that describe something that you cannot understand. You want to find out what it is all about, yet it seems that you cannot make sense of all the information you are receiving. Often parents are just not on the same wavelength as the person who is trying to communicate with them about their child’s disability. Powerlessness to change what is happening is very difficult to accept. You cannot change the fact that your child has a disability, yet parents want to feel competent and capable of handling their own life situations. It is extremely hard to be forced to rely on the judgments, opinions, and recommendations of others. Compounding the problem is that these others are often strangers with whom no bond of trust has yet been established. Disappointment that a child is not perfect poses a threat to many parents’ egos and a challenge to their value system. This jolt to previous expectations can create reluctance to accept one’s child as a valuable, developing person. Rejection is another reaction that parents experience. Rejection can be directed toward the child or toward the medical personnel or toward other family members. One of the more serious forms of rejection, and not that uncommon, is a “death wish” for the child—a feeling that many parents report at their deepest points of depression. During this period of time when so many different feelings can flood the mind and heart, there is no way to measure how intensely a parent may experience this constellation of emotions. Not all parents go through these stages, but it is important for parents to identify with all of the potentially troublesome feelings that can arise, so that they will know that they are not alone. There are many constructive actions that you can take immediately, and there are many sources of help, communication, and reassurance. Seek the Assistance of Another Parent There was a parent who helped me. Twenty-two hours after my own child’s diagnosis, he made a statement that I have never forgotten: “You may not realize it today, but there may come a time in your life when you will find that having a daughter with a disability is a blessing.” I can remember being puzzled by these words, which were nonetheless an invaluable gift that lit the first light of hope for me. This parent spoke of hope for the future. He assured me that there would be programs, there would be progress, and there would be help of many kinds and from many sources. And he was the father of a boy with intellectual disabilities. My first recommendation is to try to find another parent of a child with a disability, preferably one who has chosen to be a parent helper, and seek his or her assistance. All over the United States and over the world, there are Parent to Parent Programs. Each State also has a *Parent Training and Information Center (PTI), and many have a Community Parent Resource Center (CPRC). PTIs and CPRCs can put you in touch with parents and parent groups locally, and connect with resources in your State. Talk with Your Mate, Family, and Significant Others Over the years, I have discovered that many parents don’t communicate their feelings regarding the problems their children have. One spouse is often concerned about not being a source of strength for the other mate. The more couples can communicate at difficult times like these, the greater their collective strength. Understand that you each approach your roles as parents differently. How you will feel and respond to this new challenge may not the same. Try to explain to each other how you feel; try to understand when you don’t see things the same way. If there are other children, talk with them, too. Be aware of their needs. If you are not emotionally capable of talking with your children or seeing to their emotional needs at this time, identify others within your family structure who can establish a special communicative bond with them. Talk with significant others in your life—your best friend, your own parents. For many people, the temptation to close up emotionally is great at this point, but it can be so beneficial to have reliable friends and relatives who can help to carry the emotional burden. Rely on Positive Sources in Your Life One positive source of strength and wisdom might be your minister, priest, or rabbi. Another may be a good friend or a counselor. Go to those who have been a strength before in your life. Find the new sources that you need now. A very fine counselor once gave me a recipe for living through a crisis: “Each morning, when you arise, recognize your powerlessness over the situation at hand, turn this problem over to God, as you understand Him, and begin your day.” Whenever your feelings are painful, you must reach out and contact someone. Call or write or get into your car and contact a real person who will talk with you and share that pain. Pain divided is not nearly so hard to bear as is pain in isolation. Sometimes professional counseling is warranted; if you feel that this might help you, do not be reluctant to seek this avenue of assistance. Take One Day at a Time Fears of the future can immobilize one. Living with the reality of the day which is at hand is made more manageable if we throw out the “what if’s” and “what then’s” of the future. Even though it may not seem possible, good things will continue to happen each day. Worrying about the future will only deplete your limited resources. You have enough to focus on; get through each day, one step at a time. Learn the Terminology When you are introduced to new terminology, you should not be hesitant to ask what it means. Whenever someone uses a word that you don’t understand, stop the conversation for a minute and ask the person to explain the word. Seek Information Some parents seek virtually “tons” of information; others are not so persistent. The important thing is that you request accurate information. Don’t be afraid to ask questions, because asking questions will be your first step in beginning to understand more about your child. Learning how to formulate questions is an art that will make life a lot easier for you in the future. A good method is to write down your questions before entering appointments or meetings, and to write down further questions as you think of them during the meeting. Get written copies of all documentation from physicians, teachers, and therapists regarding your child. It is a good idea to buy a three-ring notebook in which to save all information that is given to you. In the future, there will be many uses for information that you have recorded and filed; keep it in a safe place. Again, remember always to ask for copies of evaluations, diagnostic reports, and progress reports. If you are not a naturally organized person, just get a box and throw all the paperwork in it. Then when you really need it, it will be there. Do Not Be Intimidated Many parents feel inadequate in the presence of people from the medical or educational professions because of their credentials and, sometimes, because of their professional manner. Do not be intimidated by the educational backgrounds of these and other personnel who may be involved in treating or helping your child. You do not have to apologize for wanting to know what is occurring. Do not be concerned that you are being a bother or are asking too many questions. Remember, this is your child, and the situation has a profound effect on your life and on your child’s future. Therefore, it is important that you learn as much as you can about your situation. Do Not Be Afraid to Show Emotion So many parents, especially dads, repress their emotions because they believe it to be a sign of weakness to let people know how they are feeling. The strongest fathers of children with disabilities whom I know are not afraid to show their emotions. They understand that revealing feelings does not diminish one’s strength. Learn to Deal with Natural Feelings of Bitterness and Anger Feelings of bitterness and anger are inevitable when you realize that you must revise the hopes and dreams you originally had for your child. It is very valuable to recognize your anger and to learn to let go of it. You may need outside help to do this. It may not feel like it, but life will get better and the day will come when you will feel positive again. By acknowledging and working through your negative feelings, you will be better equipped to meet new challenges, and bitterness and anger will no longer drain your energies and initiative. Maintain a Positive Outlook A positive attitude will be one of your genuinely valuable tools for dealing with problems. There is, truly, always a positive side to whatever is occurring. For example, when my child was found to have a disability, one of the other things pointed out to me was that she was a very healthy child. She still is. The fact that she has had no physical impairments has been a great blessing over the years; she has been the healthiest child I have ever raised. Focusing on the positives diminishes the negatives and makes life easier to deal with. Keep in Touch with Reality To stay in touch with reality is to accept life the way it is. To stay in touch with reality is also to recognize that there are some things that we can change and other things that we cannot change. The task for all of us is learning which things we can change and then set about doing that. Remember That Time Is on Your Side Time heals many wounds. This does not mean that living with and raising a child who has problems will be easy, but it is fair to say that, as time passes, a great deal can be done to alleviate the problem. Therefore, time does help! Find Programs for Your Child Even for those living in isolated areas of the country, assistance is available to help you with whatever problems you are having. Your state’s Parent Training and Information Center can connect you with folks who can help you get started in gaining the information and assistance you need. While finding programs for your child with a disability, keep in mind that programs are also available for the rest of your family. Take Care of Yourself In times of stress, each person reacts in his or her own way. A few universal recommendations may help: Get sufficient rest; eat as well as you can; take time for yourself; reach out to others for emotional support. Avoid Pity Self-pity, the experience of pity from others, or pity for your child is actually disabling. Pity is not what is needed. Empathy, which is the ability to feel with another person, is the attitude to be encouraged. Decide How to Deal With Others During this period, you may feel saddened by or angry about the way people are reacting to you or your child. Many people’s reactions to serious problems are caused by a lack of understanding, simply not knowing what to say, or fear of the unknown. Understand that many people don’t know how to behave when they see a child with differences, and they may react inappropriately. Think about and decide how you want to deal with stares or questions. Try not to use too much energy being concerned about people who are not able to respond in ways you might prefer. Keep Daily Routines as Normal as Possible My mother once told me, “When a problem arises and you don’t know what to do, then you do whatever it was that you were going to do anyway.” Practicing this habit seems to produce some normalcy and consistency when life becomes hectic. Remember That This is Your Child This person is your child, first and foremost. Your child’s development may be different from that of other children, but this does not make your child less valuable, less human, less important, or in less need of your love and parenting. Love and enjoy your child. The child comes first; the disability comes second. If you can relax and take the positive steps just outlined, one at a time, you will do the best you can, your child will benefit, and you can look forward to the future with hope. Recognize That You Are Not Alone The feeling of isolation at the time of diagnosis is almost universal among parents. In this article, there are many recommendations to help you handle feelings of separateness and isolation. It helps to know that these feelings have been experienced by many, many others, that understanding and constructive help are available to you and your child, and that you are not alone.
For Parents When They Learn That Their Child Has a Disability by Patricia McGill Smith
*Families Helping Families of Greater New Orleans is the Louisiana Parent Training and Information Center (PTI) in our State.
Martin Luther King, Jr. Day Monday, January 17, 2022
Birth Defects Awareness Month - Join the nationwide effort to raise awareness of birth defects, their causes, and their impact! Not all birth defects can be prevented. Cervical Health Awareness Month - The United States Congress designated January as Cervical Health Awareness Month. Nearly 13,000 women in the United States are diagnosed with cervical cancer each year, but the disease is preventable with vaccination and appropriate screening (Pap and HPV tests). Healthy Weight Awareness Month - get physical and physically activity as it’s proven to help with achieving and maintaining a healthy weight. National Blood Donor Month - declared by President Richard Nixon in 1970, to pay tribute to voluntary blood donors and increase donation by others. The acute need for blood was reflected earlier this month in the Red Cross's emergency call for donations. National Glaucoma Awareness Month - an important time to spread the word about this sight-stealing disease. Currently, more than 3 million people in the United States have glaucoma. National Stalking Awareness Month - an annual call to action to recognize and respond to the serious crime of stalking. It is critical to raise the issue of stalking as its own form of gender-based violence as well as a crime that frequently predicts and co-occurs with physical and sexual violence. National Winter Sports Traumatic Brain Injury (TBI) Awareness Month - calls attention to the fact that although sports injuries contribute to fatalities infrequently, the leading cause of death from sports-related injuries is traumatic brain injury. Poverty in America Awareness Month - a time when individuals, charities, and large organizations can reexamine their commitment to helping those in need. There are roughly 40.6 million people living in poverty in the United States, and Native Americans tend to be over-represented within this population. Thyroid Awareness Month - Up to 20 million Americans have a thyroid condition — and up to 60 percent of them don't know it. The thyroid can be either overactive or underactive. National Folic Acid Awareness Week - The first week of January. Folic acid is a B-vitamin that is necessary for proper cell growth. If taken before and during early pregnancy, folic acid can prevent up to 70% of some serious birth defects of the brain and spine, called neural tube defects. World Braille Day - January 4 | Braille is a tactile representation of alphabetic and numerical symbols using six dots to represent each letter and number, and even musical, mathematical and scientific symbols. Braille (named after its inventor in 19th century France, Louis Braille) is used by blind and partially sighted people to read the same books and periodicals as those printed in a visual font. Use of braille allows the communication of important information to and from individuals who are blind or partially sighted, ensuring competency, independence and equality. Kawasaki Disease Awareness Day - January 26 an illness that causes inflammation (swelling and redness) in blood vessels throughout the body. It happens in three phases, and a lasting fever usually is the first sign. World Leprosy Day Last Sunday of January | raises awareness of a disease that many people believe to be extinct. Today it is not just the disease that is forgotten, but the people too. Chronic Traumatic Encephalopathy (CTE) Awareness Day - January 30 | Sadly the disease has been found in youth athletes as well as professional players. This day is to spread awareness that our brains are very fragile and need protection. Helmets do not protect from CTE.
Martin Luther King, Jr. was a social activist and Baptist minister who played a key role in the American civil rights movement from the mid-1950s until his assassination in 1968. King sought equality and human rights for African Americans, the economically disadvantaged and all victims of injustice through peaceful protest. He was the driving force behind watershed events such as the Montgomery Bus Boycott and the 1963 March on Washington, which helped bring about such landmark legislation as the Civil Rights Act and the Voting Rights Act. King was awarded the Nobel Peace Prize in 1964 and is remembered each year on Martin Luther King, Jr. Day, a U.S. federal holiday since 1986.
JANUARY
National Mentoring Month - a campaign held each January to promote youth mentoring in the United States. It was inaugurated in 2002, and is spearheaded by the Harvard School of Public Health, MENTOR, and the Corporation for National and Community Service. January 6, 2022 – I Am a Mentor Day - A day for volunteer mentors to celebrate their role and reflect on the ways mentors have enhanced their world. January 17, 2022– International Mentoring Day - In honor of Muhammad Ali’s birthday, join the international conversation on social media where photos, videos and messages of powerful mentoring stories are shared. Use #MentoringDay & #Mentoring month in your posts! January 17, 2022 – Dr. Martin Luther King, Jr. Day of Service - A day to share in the inspirational words of Dr. MLK, Jr. and elevate the spirit of service through volunteerism. January 26 – January 28, 2022 – National Mentoring Summit January 27, 2022 – #ThankYourMentor Day
Awareness Calendar
Black History Month (African-American History Month) - The theme for 2022 focuses on the importance of Black Health and Wellness. This theme acknowledges the legacy of not only Black scholars and medical practitioners in Western medicine, but also other ways of knowing (e.g., birthworkers, doulas, midwives, naturopaths, herbalists, etc.) throughout the African Diaspora. The 2022 theme considers activities, rituals and initiatives that Black communities have done to be well.
American Heart Month- Raise awareness about heart health and urge those around you to prevent heart disease. #OurHearts are healthier together. National Children’s Dental Health Month - is an observance that brings together thousands of dedicated dental professionals, healthcare providers, and educators to promote the benefits of good oral health to children, their caregivers, teachers and many others. Low Vision Awareness Month - Use NEI materials to help teach people in your community how to protect their vision. Their National Eye Health Education Program (NEHEP) offers disease- and audience-specific programs for health educators. You’ll also find handy resources about eye health in their extensive library of NEI outreach materials. National Cancer Prevention Month - February is National Cancer Prevention Month. Check out the Seven Steps to Prevent Cancer, download A Guide to Preventing Cancer, and review the other resources on their website. Teen Dating Violence Awareness Month - Every February across the United States, teens and those who support them join together for a national effort to raise awareness to teen dating violence. Dating violence is more common than many people think. One in three teens in the U.S. will experience physical, sexual, or emotional abuse by someone they are in a relationship with before they become adults. And nearly half (43%) of college women report experiencing violent and abusive dating behaviors. By joining together every February, we can spread awareness and stop dating abuse before it starts! February 2 - Groundhog Day - February 2nd each year brings the most-watched weather forecast of the year—and the only one led by a rodent. Legend has it that on this morning if a groundhog can see its shadow, there will be six more weeks of winter. If it cannot see its shadow, spring is on the way. February 2 - Rheumatoid Arthritis Awareness Day - is a disease that affects 1.5 million Americans, most of them women. And arthritis is only one symptom of the disease. February 4 - World Cancer Day - An international awareness day led by the Union for International Cancer Control (UICC) to raise worldwide attention and inspire action for a cancer-free future. February 5 – Go Red for Women Day Join the movement and help raise awareness of women’s heart health. Our Go Red for Women activation kits include everything you need to spread the word and start the conversation. Plus, proceeds from your purchase help fund our mission to end heart disease and stroke in women. February 5 - Give Kids a Smile Day - The ADA Foundation's Give Kids A Smile program kicks off on the first Friday in February each year. Then, throughout the year, dentists all across the country gather in hundreds of locations to offer free dental services to children who may not otherwise have access to a dentist. February 7-12 - Children's Mental Health week in an effort to raise awareness and end prejudice and discrimination. Children's Mental Health Matters! This year’s Children’s Mental Health Week is taking place on 7-12 February 2022 and the theme is Growing Together. February 7-14 - Congenital Heart Disease (CHD) Awareness Week - An opportunity to show appreciation to the doctors and nurses at Primary Children's Medical Center who care for our kids. IHH also does outreach and public education about CHD's at the hospital throughout the week. February 11 - World Day of the Sick - The National Association of Catholic Chaplains has developed resources to help with the planning and celebration of World Day of the Sick. The resources include suggestions and prayers that can be used by individuals as well as by dioceses, parishes, health care institutions, and other organizations. (International) February 14 - Valentine’s Day February 15 - International Childhood Cancer Day - a global collaborative campaign to raise awareness about childhood cancer, and to express support for children and adolescents with cancer, the survivors and their families. February 17 - Random Acts of Kindness Day - has grown in popularity each year. It is celebrated by individuals, groups and organizations, nationwide, to encourage acts of kindness. It is a favorite day to many, as people everywhere are enjoying doing these acts of kindness. February 19 - Coast Guard Reserves Birthday the official birthday of the United States Coast Guard Reserve. Officially set-up in the late 1930s as a “civilian reserve” operation, it was non-military in nature. February 20 - World Day of Social Justice (Recognized by the UN) - (International) - Social justice is an underlying principle for peaceful and prosperous coexistence within and among nations. February 22 - National Heart Valve Disease (U.S.) - increase recognition of the specific risks and symptoms of heart valve disease, improve detection and treatment, and ultimately save lives. February 27 - Anosmia Awareness Day - loss of the sense of smell. February 28 - Rare Disease Day - There are over 300 million people living with one or more of over 6,000 identified rare diseases around the world. Rare diseases currently affect 3.5% - 5.9% of the worldwide population.
FEBRUARY
Developmental Disabilities Awareness Month - Each March, the National Association of Councils on Developmental Disabilities (NACDD), and their partners work together to create a social media campaign that highlights the many ways in which people with and without disabilities come together to form strong, diverse communities. The campaign seeks to raise awareness about the inclusion of people with developmental disabilities in all facets of community life, as well as awareness of the barriers that people with disabilities still sometimes face in connecting to the communities in which they live. Cerebral Palsy Awareness Month - The month of March is designated as National Cerebral Palsy Awareness Month. National Cerebral Palsy Awareness Month is committed to raising awareness of the disorder as well as the ongoing research efforts being done to find new treatments and hopefully a cure. Brain Injury Awareness Month - March is Brain Injury Awareness Month. For more than three decades, the Brain Injury Association of America (BIAA) has proudly led the nation in observing Brain Injury Awareness Month by conducting an engaging public awareness campaign in March of each year Multiple Sclerosis Awareness Month - Every day, people living with MS do whatever it takes to move their lives forward despite the challenges. By sharing their stories, we help people better understand life with MS and become inspired to do whatever it takes to change the world for people living with MS. National Women’s History Month The Library of Congress, National Archives and Records Administration, National Endowment for the Humanities, National Gallery of Art, National Park Service, Smithsonian Institution and United States Holocaust Memorial Museum join in commemorating and encouraging the study, observance and celebration of the vital role of women in American history. Colorectal Cancer Awareness Month - Colorectal cancer refers to cancer in the colon and/or rectum, or both. As the graphic below shows, the colon is part of the large intestine or large bowel. The rectum is the passageway that connects the colon to the anus. Most colorectal cancers develop first as polyps, which are abnormal growths inside the colon or rectum that may later become cancerous if they are not removed. Kidney Cancer Awareness Month - Cancer is named for the place the cancer starts, so, kidney cancer starts in the tissues of the kidney. Kidney cancer is also referred to as renal cell carcinoma (RCC). Multiple Myeloma Awareness Month National Multiple myeloma is a cancer that forms in a type of white blood cell called a plasma cell. Healthy plasma cells help you fight infections by making antibodies that recognize and attack germs. Nutrition Month - National Nutrition Month® is an annual campaign created by the Academy of Nutrition and Dietetics. During the month of March, everyone is invited to learn about making informed food choices and developing healthful eating and physical activity habits.
21st - World Down Syndrome Day
MARCH
World Down Syndrome Day (WDSD), is a global awareness day which has been officially observed by the United Nations since 2012. The date for WDSD being the 21st day of the 3rd month, was selected to signify the uniqueness of the triplication (trisomy) of the 21st chromosome which causes Down syndrome. Down Syndrome International (DSi) encourages our friends all over the world to choose their own activities and events on WDSD to help raise awareness of what Down syndrome is, what it means to have Down syndrome, and how people with Down syndrome play a vital role in our lives and communities.
2nd - Read Across America Day - Celebrate a nation of diverse readers with these recommended books, authors, and teaching resources that represent an array of experiences and cultures. 8th - International Women’s Day - An equal world is an enabled world. 14th - World Kidney Day - a global campaign aimed at raising awareness of the importance of our kidneys. 21st - International Day for the Elimination of Racial Discrimination 24th - World Tuberculosis Day - Each year, World TB Day is recognized on March 24. This annual event commemorates the date in 1882 when Dr. Robert Koch announced his discovery of Mycobacterium tuberculosis, the bacillus that causes tuberculosis (TB). 26th - Earth Hour -Every year, we countdown together across the globe to celebrate Earth Hour and take one iconic action: switch off the lights. Join millions of people around the world and switch off your lights in support of nature and our planet on Saturday, 26 March, 2022 at 8:30 pm.
Assistive Tech p.15
26th - Purple Day – Epilepsy Awareness Day - Purple Day is an international grassroots effort dedicated to increasing awareness about epilepsy worldwide. On March 26th annually, people in countries around the world are invited to wear purple and host events in support of epilepsy awareness. Last year, people in dozens of countries on all continents including Antarctica participated in Purple Day!
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Applicants determined ineligible for any other Medicaid or CHIP program and meets all other criteria for Act 421-CMO continues to Step 2 of the enrollment process. Step 2. Level of Care Assessment at your Local Governing Entity Your Local Governing Entity (LGE) needs to complete an assessment to determine if the applicant meets the level of care requirement. You will receive a level of care packet, which contains documents to complete and return to LDH. All forms must be filled out completely, supporting documentation provided (where indicated) and returned to LDH timely. The LGE completes the assessment by reviewing information and forms provided by the applicant so it is important to follow the instructions in the level of care packet. Applicants that meet the level of care requirement continues to Step 3 of the enrollment process. Step 3. Disability Determination Applicants must meet the definition of disability as set forth by the Social Security Administration. Medicaid will request a disability decision from the Medical Eligibility Determination Team (MEDT) for applicants that do not have a disability determination with the Social Security Administration Office. MEDT may need additional documentation in order to reach a decision on the disability determination. If you would like assistance in gathering the necessary medical records, you can sign an Authorization to Release or Obtain Health Information Form (HIPAA 202L) to obtain these records directly from the providers (physicians, home health, social service, etc.) that is in the level of care packet. This form is used to assist you in obtaining medical records needed to determine if your child meets the level of care and disability requirement for the Act 421-CMO program. Applicants that meet the disability requirement continues to Step 4. Step 4. Enrollment/Service Coverage through a Healthy Louisiana plan Applicants meeting the medical and financial requirements will receive Medicaid coverage through a Healthy Louisiana plan. When completing a Medicaid application, you can choose a Healthy Louisiana health and dental plan. If you have not selected a health plan, enrollment in a health plan is automatic upon enrollment in Medicaid. The family will have 90 days from date of enrollment to change plans when automatic enrollment occurs. Source: Louisiana.gov > LDH > Medicaid
This material, "Returning to School Must Include Reinvestment in Section 504 Plans", was published by the Center for American Progress. (online) Center for American Progress (www.americanprogress.org)
How Parent Support Groups Can Help (Also available in Spanish: Cómo pueden ayudar los grupos de apoyo para padres) When a child’s challenges first emerge, parents often find themselves feeling not only confused but alone. This is where special-needs communities can become key. By finding other parents who are facing, or have faced, the same issues, many parents feel better able to navigate a path they never envisioned.
Special Needs Trusts and ABLE Accounts: How Are They Different? (Also available in Spanish: Fideicomisos Para Necesidades Especiales y Cuentas ABLE: ¿En qué se diferencian?) Do parents know the differences between a special needs trust and an ABLE account? This video can help them decide which is right for their family.
Disability Disclosure for Apprentices The Partnership on Inclusive Apprenticeship released the third resource in its apprenticeship resource series for people with disabilities. PIA published “Disclosing Your Disability and Requesting an Accommodation” to provide apprentices with information on if, when and how to disclose their disabilities and request accommodations to support their success as apprentices.
Behavior Challenges: Conversation Starters to Use with Your Child’s Teacher Also available in Spanish: Problemas de conducta: Cómo iniciar la conversación con el maestro de su hijo When a child has behavior challenges, it can be hard for parents to talk about them with teachers. Having these conversations can help parents get support for their child at school, even if learning is happening at home. Parents can use these sample conversation starters to help themselves plan what to say when they talk with their child’s teacher.
Supporting and Protecting the Rights of Students at Risk of Self-Harm From the U.S. Department of Education’s Office for Civil Rights (OCR) and the U.S. Department of Justice, this joint 3-page fact sheet can help support students with mental health disabilities, their families, and their schools in the era of COVID-19. OCR also released a letter to educators highlighting the civil rights obligations of schools and postsecondary institutions to students with mental health disabilities. Connect to Care From the Child Mind Institute come several on-point mental health resources for families and professionals alike. Its new Family Resource Center, which features over 700 resources on kids’ mental health, learning disorders, and common parenting challenges — all in English and Spanish. Its latest newsletter, which connects you with stand-alone articles in English and Spanish, such as Should I get care for my child? and How to find a children's mental health professional. The 2021 Children’s Mental Health Report (also available in Spanish), which focuses on the effects of the COVID-19 pandemic on children’s mental health. Cutting and Other Self-Injury Also available in Spanish: Cortes y otro tipo de autolesiones: Cómo ayudar When kids intentionally hurt themselves, often by cutting or scratching their skin, it's often as a way to manage difficult emotions. This Child Mind offering discusses self-injurious behavior as part of answering 3 questions: Why do kids cut or hurt themselves? What are signs of self-injury? and How can parents help?
Addressing Children's Mental Health Issues
Daiwa Felicity Hand Massager Machine Do you have a kiddo who just loves deep pressure and sensory of that sort? You put your hand into it and the compression massager massages to give your autistic teen or adult the sensory input that they love.
ZNNCO 3PCS Silicone Tie-dye Push pop Bubble Fidget Toy, Autism Special Needs Stress Reliever, Squeeze Sensory Tools to Relieve Emotional Stress for Kids & Adults
Pinch Me Therapy Dough - A squishable compound that’s designed to channel relief through the senses, naturally. This placating putty was developed using the proven scientific methodology of color and scent as they relate to relaxation-all in the convenience of a portable tin.
EARN Unveils New Website The Employer Assistance and Resource Network on Disability Inclusion unveiled its newly redesigned website, AskEARN.org. Structured around four phases of the employment lifecycle – recruit, hire, retain and advance – the new site offers resources including self-paced online training courses, easy-to-use checklists, in-depth policy guides, videos profiling disability-inclusive employers and archived webinars on a range of issues. In addition, the website offers information on workplace mental health, COVID-19 employment-related issues, inclusive telework, and the benefits of hiring neurodiverse employees.
RESOURCES FOR PARENTS & EDUCATORS
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