Free Webinars and Training P.17
TIMES
MAGAZINE
Exceptional
What's Going ON?
From the Executive Director, Mary Jacob 30 YEARS LATER - The Law That Made the Biggest Change in Louisiana Developmental Disabilities Services P.4
Occupational Therapy
Sound Sensitivity P.6
ISSUE 18
AUGUST 2019
A MOTHER'S JOURNEY: Learning systems change, teaching systems change, and changing systems P.22
COVER STORY
EXCLUSIVE
MISSION The Mission of Families Helping Families of Greater New Orleans is to educate and connect children and adults with disabilities, and their families to resources, services, and supports to attend school, work, and thrive in their communities.
OUR TEAM Mary Jacob, Executive Director mjacob@fhfofgno.org - Ext. 207 Sharon Blackmon, Community Outreach Specialist sblackmon@fhfofgno.org - Ext. 208 Bebe Bode, Director of Public Relations bbode@fhfofgno.org - Ext. 226 Nicole Desroche, Information & Training Specialist ndesroche@fhfofgno.org - Ext.218 Liz Dumas, Administrative Assistant ldumas@fhfofgno.org - Ext. 202 Minerva Flores, Intake Specialist mflores@fhfofgno.org - Ext. 217 Laura S. Nata, Director of Peer to Peer Support lsnata@fhfofgno.org - Ext. 209 Thuy Nguyen, CSHS Parent Liaison tnguyen@fhfofgno.org 504.896.1340 phone | 504.896.1360 fax Steven Nguyen, CSHS Youth Liaison snguyen@fhfofgno.org 504.896.1340 phone | 504.896.1360 fax Jessica Rodrigue, Director of Training jrodrigue@fhfofgno.org - Ext. 204 Denise Sweatman, Director of Administrative Services dsweatman@fhfofgno.org - Ext. 203 Paul LeBlanc, Property Manager
BOARD OF DIRECTORS Gregory Brenan, CPA, CCIFP, CGMA Lisa Gennusa Ledet Jo Ann D. LoRusso, Ph.D. Denise Barrera, MPH, MSW Judith Otto, LOTR, CDRS Debra Dixon M.Ed.+30 Jedidiah Jackson Ashley Bourg Michelle Archambault, CPA/PFS
OFFICE HOURS Monday: 9:00 AM - 12:00 PM, 12:30 PM - 4:00 PM Tuesday: AFTER HOURS 9:00 AM - 12:00 PM, 12:30 PM - 8:00 PM Wednesday: 9:00 AM - 12:00 PM, 12:30 PM - 4:00 PM Thursday: 9:00 AM - 12:00 PM, 12:30 PM - 4:00 PM Friday: 9:00 AM - 12:00 PM
700 Hickory Avenue Harahan, LA 70123 504.888.9111 800.766.7736 504.353.2350 fax info@fhfofgno.org fhfofgno.org
Exceptional Times
04 30 Years Later - Act 378 06 Sound Sensitivity 08 Parent Notification and Consent in Early Intervention 10 Ready or Not 11 Introductions, PLEASE! 12 Floods 16 Healthy Blue Back to School Giveaway 17 What's Going On? 19 Independence 21 Dif-abilities 22 Cover Story: A Mother's Journey: Learning systems change, teaching systems change, and changing systems 26 Congratulations to our Board of Directors Chairman, Greg Brenan 28 Resources for Families & Educators 29 Partners in Policymaking - Getting "Plugged In" to Advocacy 31 August Awareness 32 Updates from the U.S. Department of Education 33 Welcome to the Wonderful World of Family Fun 34 Louisiana School Finder
Cover Story: The Gary Family
CONTENTS
“Children, regardless of the severity of their disability, need families and enduring relationships with adults in nurturing home environment. As with all children, children with developmental disabilities need families and family relationships to develop their fullest potential.” “Adults with developmental disabilities should be afforded the opportunity to make decisions for themselves and to live in typical homes and communities where they can exercise their full rights and responsibilities as citizens”
Randall Webster, Mary Jacob and Jamie Duplechine
By Mary Jacob, Executive Director
The Law That Made the Biggest Change in Louisiana Developmental Disabilities Services
“Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it's the only thing that ever has.”
Last month The Louisiana Developmental Disabilities Council and advocates from all over the state and further, came together to celebrate the 30th anniversary of the passing of Act 378. Act 378 was and in my opinion still is the biggest win ever for the disability community and families in Louisiana. Act 378 embodied the famous quote of Margaret Mead:
In 1989, a small group of Louisiana moms and dads of children with disabilities convinced state legislators that children with disabilities could receive better services if they were at home with their families. Additionally, the move from institutionalization to home would save the state a tremendous amount of money. More importantly, children would now be raised in natural settings where most children are raised. Act 378 specifies that services for persons with developmental disabilities should be responsive to the needs of the individual and his family, rather than fitting the person into the existing programs. This is the premises of the guiding principles of Act 378:
How does Act 378 help your family? If you receive a Medicaid waiver, thank Act 378. If you receive Family Flexible Funding, thank Act 378. If you’ve ever used a Families Helping Families Resource Center, thank Act 378. If you’ve ever received financial support from your local human services district or authority, thank Act 378. Even though Act 378 was a huge win in 1989, many of the services provided to individuals with developmental disabilities and their families have been challenged many times over the past 30 years, with the threats of major financial cuts that could have potentially reduced and even eliminated some services. As recent as 2 years ago we still had over 10,000 individuals on the New Opportunities Waiver (NOW) waiting list. Today, thanks to system transformation and the introduction of a tiered waiver system, Mark Thomas, Louisiana Department of Health, Deputy Secretary, reports there is no one on the waiver waiting list. Act 378 truly changed the history of services for individuals with developmental disabilities. This legislation truly provided the supports that enabled them to be fully participating and contributing members of their communities. So, while I celebrate these great accomplishments and the parents that got us here, I also know the importance of continued advocacy work to not only protect these services but continuously improve services as research develops for best practices in home and community based services for individuals with developmental disabilities.
30 Years Later
Rose Gilbert, Frances Hilburn and Mary Jacob
Lillian DeJean and Mary Jacob
Act 378 provided the push we needed in Louisiana to have Medicaid Waivers. The waiver has been a blessing and a curse over the years. Blessing - INDEPENDENCE! Nick is as independent as he wants to be, he has worked 15+ years at the same job! He gets to do his favorite activity- skating, every Friday and Saturday night! And mom and dad get our independence too - can you imagine a date night every Friday and Saturday?!?! We manage when he needs services and when he gets natural supports! Curse - lots of strangers have come through our home. Case Managers, provider agency staff, direct support workers. Some of them became lifelong friends we never would have otherwise met, others I don’t remember at all. Sometimes there were frustrating interactions but we always learned how to handle situations and were better for the experience. Is life better with the waiver? YES! Was it a breeze? Nah. Would I like life without the waiver? NO!! Rose Gilbert, Harahan
The automatic feature of hand dryers, toilets, and faucets can be very startling to children with auditory sensitivities, exacerbating their body’s fight or flight response and often resulting in distress.
Recently an article came out about the impressive work of 13 year old Nora Keegan who studied the decibel levels of hand dryers. What she found was that there was a reason so many children disliked the loudness of those hand dryers; the decibel level they emitted was actually louder than Health Canada’s regulation for children’s toys. This bright young girl figured out that due to children’s height being shorter than adults, they are closer to the dryer’s emission of sound. The dryers that she tested around Calgary were actually potentially harmful to children’s hearing when taking into account these factors. In addition, Nora also discovered that the noise was louder when your hands actually contacting the air underneath the dryer. When I first read this article, I instantly made the connection to my patients with sensory processing differences. If Nora discovered that the sound of hand dryers is uncomfortably loud for a typical child, it stands to reason that those with auditory sensitivity would understandably have an even worse reaction. I felt that this study further validates the day to day difficulty that my patients have in dealing with a world that is often much too loud and overwhelming for them to process. In thinking further about Nora’s study, there is one huge factor that I have observed that makes hand dryers even more offensive to children; the automatic feature. A sudden, unexpected loud noise is more offensive than one that you are expecting. The automatic feature of hand dryers, toilets, and faucets can be very startling to children with auditory sensitivities, exacerbating their body’s fight or flight response and often resulting in distress. I can’t say I blame my patients for having difficulty with using public restrooms! If I am a child, and a bathroom has the potential to make scientifically proven too-loud noises out of seemingly nowhere, I would be scared to enter too. There are some strategies that I have used in working with families that have been successful in helping children with auditory sensitivity to be successful in using public restrooms. Practice some noises in the home environment. Allow your child to have control of turning certain sounds on and off, as putting your child in control is the most important thing to help them feel comfortable and not startled. Ideas for objects that your child can practice with include hair dryers on low, quieter models of vacuums, and a clothes dryer. Of course, also incorporate noise canceling headphones into this practice if your child needs them. Bring noise canceling headphones, headphones to play music or earplugs with you for your child to use. Many children will have to practice tolerating these items first before using them in the community. Bring tape, a handkerchief or something to cover the automatic sensors on toilets before your child enters the stall. Tell your child that you turned the toilet “off.” If they can handle it, teach your child what controls the automatic feature. Having them realize what exactly activates the dryer or toilet can help your child feel more in control of their environment. Bring paper towels with you so your child can dry their hands and not have to use the dryer. Bring a laminated sign that says “Noise sensitive child using restroom: have a paper towel on us.” and tape it temporarily to the hand dryer while your child is in there, placing a few paper towels on top for anyone in the restroom at that time to use. Teach your child deep breathing techniques that they can use when in the stressful environment of a public restroom. Sing a comfort song along with your child, often creating your own noise can help drown out the negative noises happening around you. It is important to also involve your child in this process and work together as much as possible on the right strategies for them. If you have any further questions regarding auditory sensitivity, seek out an occupational therapist trained in sensory integration to help guide you and your child.
SOUND SENSITIVITY
Rebecca Connick is an occupational therapist at Crane Rehab Center- Pediatrics in New Orleans as well as an Early Steps provider. A certified user of The Sequential Oral Sensory (SOS) Approach to Feeding and a Mentored Clinician of the STAR Institutes's SPD Level 1 Advanced Intensive Mentorship program, Rebecca treats many children with sensory processing deficits and feeding disorders. For more educational articles by Rebecca, follow her blog at or on Facebook @fingertipsblog.
Parents and Caretakers of individuals with developmental disabilities, individuals with developmental disabilities, and concerned citizens are invited to attend these meetings. All guest will have the opportunity to make public comments about developmental disability topics.
Regional Advisory Committee (RAC) Meetings
The following meeting will be held at JPHSA 5001 West Bank Expy., Room 118, Marrero, LA October 29, 2019
Parent Notification and Consent in Early Intervention
Parents are essential partners in early intervention. They have the right to be deeply involved at every step along the way, from evaluation of their child, to the writing of the individualized family service plan (IFSP), to helping to determine the early intervention services their child receives. Not surprisingly, Part C of IDEA includes specific provisions to support the informed involvement of parents in their child’s early intervention program. Two notable requirements are: prior written notice, which the early intervention system must provide to parents at key points in time; and parental consent, which must be obtained from parents, also at key points in time. The right to be informed and the right to give or refuse consent for pivotal activities are important procedural safeguards for parents and recognize their authority and responsibility in making decisions about their child’s involvement in early intervention, and the family’s. Prior Written Notice: Parents’ Right to Be Fully Informed. Prior written notice refers to the notification that must be provided to parents a reasonable time before the lead agency or an early intervention services (EIS) provider proposes (or refuses) to “initiate or change the identification, evaluation, or placement of their infant or toddler, or the provision of early intervention services to the infant or toddler with a disability” and his or her family. Purpose | The purpose of prior written notice is always the same—to ensure that parents are fully informed regarding whatever action the lead agency or EIS provider is proposing to take (or not take) with their infant or toddler or with the family. Parental consent is often needed before the lead agency or EIS provider may proceed, and that consent must be informed. Even if parental consent is not required, parents still have the right to know when something about their child’s (or family’s) involvement in early intervention is being proposed, refused, about to start, or about to change. Content of the notice | The notice must be in sufficient detail to inform parents about— the action that is being proposed or refused; the reasons for taking (or refusing to take) the action; and all procedural safeguards that are available to parents, should they disagree with the early intervention system (e.g., mediation, filing a State complaint or a due process complaint, relevant timelines). Examples | Prior written notice to parents is required in circumstances like these: The early intervention system wants to evaluate their infant or toddler and is seeking parental consent for the evaluation. The early intervention system refuses to evaluate an infant or toddler when parents have requested an evaluation. The early intervention system intends to change the child’s identification as an eligible “infant or toddler with a disability.” The early intervention system wants to begin providing early intervention services to the infant or toddler and family. A service provider wants to change the services being provided to an infant or toddler with a disability. Native language | To ensure that a parent can understand the notice, it must be written in a language understandable to the general public and provided in the parent’s native language (or other mode of communication), unless it is clearly not feasible to do so. If the parent’s language is not a written one, the lead agency or EIS provider must ensure that: the prior written notice is translated orally to the parent, the parent understands the notice, and there is written evidence that these requirements have been met. Parental Consent Consent within IDEA has a very specific meaning that is closely tied to prior written notice. Consent, in IDEA, means informed written consent. The notice that is provided to parents informs them by completely describing a proposed or refused action and the reasons for it. This builds the foundation of understanding upon which informed consent may then be given (or not). The term consent is defined in the Part C regulations as follows: §303.7 Consent. Consent means that— (a) The parent has been fully informed of all information relevant to the activity for which consent is sought, in the parent’s native language, as defined in §303.25; (b) The parent understands and agrees in writing to the carrying out of the activity for which the parent’s consent is sought, and the consent form describes that activity and lists the early intervention records (if any) that will be released and to whom they will be released; and (c)(1) The parent understands that the granting of consent is voluntary on the part of the parent and may be revoked at any time. (2) If a parent revokes consent, that revocation is not retroactive (i.e., it does not apply to an action that occurred before the consent was revoked). This definition makes it clear that: The early intervention system must use the parents’ native language (or other mode of communication) when seeking their consent for an activity. Consent must be given by parents in writing. There’s a consent form and it describes the activity for which consent is sought. The consent form also lists the early intervention records that will be released (if any) and to whom. Giving consent is voluntary on the part of parents. Parents may revoke their consent at any time. Consent during evaluation process | It will come as no surprise that both prior written notice and parental consent are required repeatedly throughout the evaluation process. These times are: Before administering screening procedures to see if an infant or toddler is suspected of having a disability Before conducting evaluation of the infant or toddler to determine eligibility for Part C Before conducting all assessments of the infant or toddler Consent before services are provided | Parental consent is also required before the early intervention services listed in the child’s IFSP may be provided. In order to ensure that parents understand what they are being asked to consent to, the Part C regulations require that the contents of the IFSP be fully explained to the parents [§303.340(e)]. The Part C regulations also make it clear that parents have the right to give or refuse consent for each service (one by one) and to revoke consent at any time for any service. Those regulations read: (d) The parents of an infant or toddler with a disability— (1) Determine whether they, their infant or toddler with a disability, or other family members will accept or decline any early intervention service under this part at any time, in accordance with State law; and (2) May decline a service after first accepting it, without jeopardizing other early intervention services under this part. [§303.420] Each early intervention service must be provided as soon as possible after the parent provides consent for that service. Other times when consent is required | There are other times when parental consent may be required, but these depend on State policy. Two are mentioned in §303.420(a) and stipulate that parental consent must be obtained before the lead agency: may use the family’s public benefits or insurance or private insurance, if such consent is required under §303.520; and discloses personally identifiable information. May the lead agency challenge or try to override a parent’s refusal to give consent? | No. The lead agency may not challenge a parent’s refusal to provide consent, not even through using the due process procedures that Part C and Part B provide for resolving disputes. [§303.420(c)]
Depending on your age, you may or may not remember three full months of summer vacation. Those of us that are at least a half of century old didn’t re-enter the school doors until the day after Labor Day. School traditionally ended right after Memorial Day and teachers could truly say the best part of being a teacher was June, July and August. Those days are long gone as first days of school has slowly crept into August with many now starting in the beginning of August. I’m not sure if this is a good or bad thing, and is this lack of summer vacation driven by the new standardized testing and accountability that didn’t exist many, many years ago? But, what I can confidently say, many parents are ready to send those precious munchkins back to school, while many educators are begging for a few more weeks of vacation time. Some of the social media chatter I’ve been reading includes “Do I buy a new book bag or just dust off the old one from last year?” “Do I buy the supply package the school offers or try to shop the sales at the local stores?” “Where can I get my school logo put on my child’s uniform?” These are questions many parents ponder, but if you are a parent of a child with a disability, these may be trivial to you. Chances are you are more concerned about if the new teacher has a copy of your child’s IEP. Will your child have a meltdown on the first day because he is attending a new school? How well will the teacher be able to communicate and understand your child’s wants and needs when they can’t verbalize them? This is not only a scary time for many parents, it’s also very stressful. Here are some ideas on how to prepare yourself and your child for a new school year. Preparing yourself for a new school year: Pull out your child’s IEP and read it. It’s important to know what the goals are and how and where your child will receive instruction. If possible, bring a copy of your child’s IEP to the teachers that will be teaching your child. No, this is not your responsibility, but I’ve learned I’d rather all teachers have a copy of it on day 1, than to find out in week 2, that someone didn’t even know my child had an IEP. This is also true for students on 504 Plans. If you will be attending an IEP meeting in the beginning of the school year, take out your child’s current evaluation too. Review it along with the current IEP. Know what goals have and haven’t been met. Contact the school before the first day if: Your child needs specific critical accommodations in order to be successful in school. (Think of things like accessible restroom, changing table, if needed; special chair or stool, etc.) It’s easy to make assumptions that everything will be in place, but do your homework and make sure they are in place. I hear stories every year about students that didn’t have specific things in place on day one and parents were asked to either keep them home for a few extra days or something was being done that wasn’t exactly appropriate and in the best interest of your child. Your child will be using special transportation to get to and from school. If your child is using special transportation, note that your child should still be attending school the same amount of time as their peers without disabilities. Some schools have fallen into the habit of having the students arrive a little late and then leave a little early, stating it’s for the safety of your child. This has nothing to do with safety, but everything to do with convenience and the Office of Civil Rights have found schools that do this negligent. Your child receives nursing services at school and/or has an Individualized Health Plan. Make sure a nurse will be in place, get any paperwork or forms that requires your child’s doctor to sign off on, and if your child has any serious allergies, make sure the school is aware of them and the plan to make sure special precautions have been made to keep your child safe. Your child should be starting school on the same day everyone else without a disability is starting. Every year we get calls from parents that say they have not received a site location for their child. This is NOT okay. If you are reading this article and you haven’t received notification from your school district where your child will be attending school this year, you need to call us NOW. Create a communication binder, book, log or whatever works for you. Always document conversations you have regarding your child. This should include the name of the person you spoke to, the date, and a summary of the conversation. I also like to put that conversation in writing through an email. This way you have a record of the conversation and if there was a misunderstanding, the email recipient has the opportunity to clarify. Create an All About Me or My Portfolio document to help introduce your child to the teachers. This is very different than an IEP. This goes deeper into what makes your child tick and can be extremely useful if your child has a rough day. If your child is non-verbal, this is essential. If your child is in high school, make sure you have a clear understanding of how they will be exiting school. Will it be with a high school diploma, certificate of achievement, Act 833, etc.? I cannot emphasize enough that you need to make sure your child is taking the right classes in order to graduate. If your child is being taught by a special education teacher, does that teacher have the required credentials to award a Carnegie unit? Understand your rights. We are offering lots of webinars in August that will help you learn your rights. You will always be your child’s best advocate, and the only way you can effectively advocate for your child is knowing your rights. Helping your child prepare for a new school year: If you haven’t started talking about the new school year yet, now might be a good time to start. Some kids need time to process the change of going back to school. Preview the year and let them know what’s going on. Create a school calendar with your child. Get a copy of your official school calendar and make a calendar for your child. Mark the days off, holidays, testing days, etc. Once you get additional information from the school like snack day, dress down days, etc. add that to the calendar too. This visual aid helps reduce stress of the unknown for a lot of students. If your child is going to a new school, hopefully you’ve visited that school already. If not or even if you have, do it again to help prepare your child for the transition. This is especially important for children that don’t transition well to new environments. New uniforms are beautiful for some kids, but for others, it might be a nightmare. If you know your child has sensory issues, let them start wearing those uniforms now. Cut out tags, wash them – over and over if necessary, do whatever you need to do to get them use to them. One of the worst meltdowns my daughter ever had was over socks. They didn’t feel right, it was weird, shoes and socks went flying, both of us ended up crying – all over a pair of socks. Let your child help pick out school supplies. This will hopefully excite them about the return to school. Support your child in learning self-advocacy skills. Students that can self-advocate will be more successful in school, but also, more successful in life. They are never too young to learn self-advocacy skills. Make sure your child knows what accommodations they should be receiving. This is a great way to introduce your child to self-advocacy. It’s important if they are allowed to use a calculator in math and the teacher has overlooked this, they are comfortable enough to ask for a calculator. Give your child a well-balanced week. Don’t overbook them with therapy and after-school activities. Children need a chance to unwind too. Rushing from one activity to another, while trying to fit in homework and dinner only causes more stress for everyone. For kids with disabilities, school can be both a wonderful and difficult experience. Sometimes parents can turn potential problems around just by anticipating them before they can occur. So anticipate what might happen or relive what has gone wrong in the past that you want to insure doesn’t repeat itself. Yes, it should be the school's job to make sure your child has what he needs to succeed. But the bottom line is: no one cares about, understands, or advocates for your child as well as you do. Finally, being a parent of a child with a disability comes with unique responsibilities, stressors and rewards. The beginning of the school year can be equally as challenging for parents as well as children. It’s important that parents practice self-care. Remember, you can’t care for your child, if you don’t care for yourself. For some parents this is extremely difficult as they often don’t have a spouse or support system they can either depend on or that truly understand their challenges. Here are some tips on parental self-care: Me time – everyone needs some me time. This is time without your children and maybe even without your spouse. It could be time at a spa, getting your nails done, or just curling up with a good book you’ve been wanting to read. This should be a time that you give yourself permission to chill. Do something you enjoy doing or something you wanted to try. Maybe you’ve always wanted to do a pottery class or take a dancing class. This could be something you do by yourself or with others – but have a well-rounded life. Build yourself a village of people you can depend on for support. Exercise is one of the best things you can do for good health and less stress. Even if you can’t join a gym or purchase an elliptical machine, turn on the music and have your own dance party around your house. This can be a lot of fun for everyone. When all else fails, just go outside for a few minutes and enjoy the change of scenery and fresh air. A new school year offers a fresh opportunity to plant the seed for success. For parents this requires you to be vigilant and supportive. Advice from the field: Here are some great tips on how to start off the year by parents that have been there and done that! Always remember you are your child’s best advocate!! Be involved and stay in constant communication with your child’s teacher, aides, nurses, etc. ~ Heather Huddleston Bonnette, Shreveport Set your child’s teacher/aids up for success from the start with positive communication, background info, and an all about me booklet. “INDIVIDUALIZED” is in IEP for a reason. Don’t let someone use the reason, “Well that’s the way we’ve always done it” for anything. Get everything in writing. Don’t go into the year with a negative mindset. It’s not good for ANYONE, including your child. When in doubt or need, call your local FHF Center! ~ Katie Corkern, Amite Have a positive attitude! I like to send “school supplies” for the teacher, nurse and paras! Coffee, creamer, snacks, sanitizer, cute note pads! ~ Kim Basile, Destrehan Ask for a meeting with the principal and some of the teachers before school starts. Let them know that you are there to support your child but also there to support them that they have the support and resources necessary for not only your son to succeed but also for them to succeed. ~ Liz Gary, Mandeville Don’t rely on school districts to fully remediate or fully address your child’s disability, even when remediation to any degree is possible. There are many avenues for private therapy. Use them. ~ Sharon Dufrene, Baton Rouge
By Mary Jacob
Center for Parent Information and Resources (July 2019). Parent Notification and Consent in Early Intervention, Newark, NJ, Author.
continued on p.14
Ready or Not
By Bebe Bode
To see an example, please click on the document you would like to view.
Introductions, PLEASE!
Did you ever wish you could find a way to introduce your child to the professionals that support him or her? This document was created by parents of children with disabilities for the purpose of providing important information to the professionals that spend time supporting their children. This booklet is easy to personalize for your individual child. Just print it out, fill it out and share with the people you feel need to know about your child. This booklet was created through a collaboration with the Mississippi PTI and Louisiana Parent Training and Information Center. Families Helping Families of Greater New Orleans is excited to share the colorful and fun, “All About Me!” and “My Portfolio” tools for families. “All About Me!” is for students between Pre-K - 5th grade. “My Portfolio” has the same purpose as “All About Me!” with a more mature style, and is for pre-teens and young adults. Parents can use “My Portfolio” to assist their child in the transition from elementary to middle and/or middle to high. “My Portfolio” empowers students, parents, and teachers to prepare earlier for the transition from school to the adult world. We hope you find “All About Me!” and “My Portfolio” easy to use tools to assist you in preparing your child and his/her teacher or new provider in getting to know each other. From one parent to another, it made a huge difference in my son’s life! Both documents are available in Microsoft Publisher and Adobe “Acrobat”. In order to edit the document in Adobe “Acrobat”, you must have the program. If you wish to use Microsoft Publisher, please contact us and we will e-mail you a copy. If you need a computer or need assistance editing the document, please don't hesitate to ask us at Families Helping Families of Greater New Orleans.
Floods
Failing to evacuate flooded areas, entering flood waters, or remaining after a flood has passed can result in injury or death. Flooding is a temporary overflow of water onto land that is normally dry. Floods are the most common natural disaster in the United States. Floods may: Result from rain, snow, coastal storms, storm surges, and overflows of dams and other water systems. Develop slowly or quickly – Flash floods can come with no warning. Cause outages, disrupt transportation, damage buildings, and create landslides. IF YOU ARE UNDER A FLOOD WARNING, FIND SAFE SHELTER RIGHT AWAY Do not walk, swim, or drive through flood waters. Turn Around, Don’t Drown! Just six inches of moving water can knock you down, and one foot of moving water can sweep your vehicle away. Stay off of bridges over fast-moving water. Determine how best to protect yourself based on the type of flooding. Evacuate if told to do so. Move to higher ground or a higher floor. Stay where you are. HOW TO STAY SAFE WHEN A FLOOD THREATENS Prepare NOW Know types of flood risk in your area. Visit FEMA’s Flood Map Service Center for information. Sign up for your community’s warning system. The Emergency Alert System (EAS) and National Oceanic and Atmospheric Administration (NOAA) Weather Radio also provide emergency alerts. If flash flooding is a risk in your location, then monitor potential signs, such as heavy rain. Learn and practice evacuation routes, shelter plans, and flash flood response. Gather supplies in case you have to leave immediately, or if services are cut off. Keep in mind each person’s specific needs, including medication. Don’t forget the needs of pets. Obtain extra batteries and charging devices for phones and other critical equipment. Purchase or renew a flood insurance policy. It typically takes up to 30 days for a policy to go into effect and can protect the life you've built. Homeowner’s policies do not cover flooding. Get flood coverage under the National Flood Insurance Program (NFIP) Keep important documents in a waterproof container. Create password-protected digital copies. Protect your property. Move valuables to higher levels. Declutter drains and gutters. Install check valves. Consider a sump pump with a battery. Survive DURING Depending on where you are, and the impact and the warning time of flooding, go to the safe location that you previously identified. If told to evacuate, do so immediately. Never drive around barricades. Local responders use them to safely direct traffic out of flooded areas. Listen to EAS, NOAA Weather Radio, or local alerting systems for current emergency information and instructions. Do not walk, swim, or drive through flood waters. Turn Around. Don’t Drown! Stay off bridges over fast-moving water. Fast-moving water can wash bridges away without warning. If your vehicle is trapped in rapidly moving water, then stay inside. If water is rising inside the vehicle, then seek refuge on the roof. If trapped in a building, then go to its highest level. Do not climb into a closed attic. You may become trapped by rising floodwater. Go on the roof only if necessary. Once there, signal for help. Be Safe AFTER Listen to authorities for information and instructions. Return home only when authorities say it is safe. Avoid driving, except in emergencies. Snakes and other animals may be in your house. Wear heavy gloves and boots during clean up. Be aware of the risk of electrocution. Do not touch electrical equipment if it is wet or if you are standing in water. If it is safe to do so, turn off the electricity to prevent electric shock. Avoid wading in floodwater, which can contain dangerous debris and be contaminated. Underground or downed power lines can also electrically charge the water. Use a generator or other gasoline-powered machinery ONLY outdoors and away from windows. Associated Content Flood Information Sheet (PDF) Flood Safety Social Media Toolkit (link) National Weather Service Weather Ready Nation Spring Safety Outreach Materials (link) The National Flood Insurance Program (NFIP) (link) www.floodsmart.gov (link) Six Things to Know Before a Disaster (video) When the Cloud Forms (video) How to Prepare for a Flood (link) Answers to Questions about Flood Insurance (link) File A Flood Insurance Claim (link) Your Homeowners Insurance Does Not Cover Flood (PDF) American Red Cross (link)
Ready.gov
Ready or Not - p.10
continued on p.27
Free WEBINARS
What's Going On?
IEP Tips and Pointers - This webinar features tried and true tips on how to positively advocate for your children, strengthen the relationships between parents and service agencies, and help create the appropriate IEP program. This webinar is perfect for families looking for ways to make the IEP meeting a more positive experience for everyone involved. Co-Sponsor: Families Helping Families of Northeast Louisiana Date: Monday, August 5, 2019 Time: 9:00 pm – 10:00 pm Audience: Parents, Caregivers, and Professionals of School-Aged Children/Students. Introduction to Special Education - Do you suspect your child could benefit from special education and related services? Or, Is your child newly evaluated? If so, this training is perfect for you. This intro to special education will give you a strong foundation to build future knowledge. You will learn the very basics through the philosophy of special education, the laws, evaluation process, and ultimately an IEP. Co-Sponsor: Families Helping Families of Southwest Louisiana Date: Tuesday, August 13, 2019 Time: 10:00 am – 11:00 am Audience: Parents, Caregivers, and Professionals of School-Aged Children/Students. Basic Rights in Special Education - Whether you’re new to special education or involved for a while, this workshop is for you. This presentation provides families with an introduction to their rights and responsibilities as parents of children with special needs under the Individuals with Disabilities Education Act (IDEA). Parents begin to identify dreams and goals for their children, understand laws and learn advocacy strategies that will help them help their children reach those goals. Co-Sponsor: Families Helping Families of Northeast Louisiana Date: Tuesday, August 13, 2019 Time: 11:30 am – 12:30 pm Audience: Parents, Caregivers, and Professionals of School-Aged Children/Students. How to Introduce Your Child to New Providers? - Parents rave about our in-house publications All About Me and My Portfolio and the usefulness in introducing their children to a variety of new service providers such as teachers, DSP’s, Therapists and more. Join us for this webinar where we will provide you access to these publications, instructions on how to personalize them for your child, and things you need to think about including in your personalized publication. If you do not have access to a printer, email us your publication, and we’ll be happy to print them out for you. Co-Sponsor: Bayou Land Families Helping Families Date: Tuesday, August 13, 2019 Time: 7:00 pm – 8:00 pm Audience: Parents, Caregivers, and Professionals of School-Aged Children/Students. Extended School Year Services (ESY) - 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. Co-Sponsor: Families Helping Families Greater Baton Rouge Date: Thursday, August 15, 2019 Time: 11:00 am – 12:00 pm Audience: Parents, Caregivers, and Professionals of School-Aged Children/Students. Educational Plans: IEP’s vs. 504 Plan - Students with disabilities will usually qualify for either an IEP or a 504 Plan – but what is the difference and is one better than the other? This training will take you through the eligibility process of both plans, the laws that regulate both, the differences in the plans and parental rights. Co-Sponsor: Families Helping Families of Acadiana Date: Tuesday, August 20, 2019 Time: 11:00 am – 12:00 pm Audience: Parents, Caregivers, and Professionals of School-Aged Children/Students. All About Test and Assessments - In this webinar 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. Co-Sponsor: Families Helping Families of Southwest Louisiana Date: Tuesday, August 20, 2019 Time: 12:30 pm – 1:30 pm Audience: Parents, Caregivers, and Professionals of School-Aged Children/Students. Back to School for Behavior Supports - Going back to school can be a difficult time with all the many changes that are taking place. These changes can sometimes lead to challenging behaviors. In this webinar, we will share strategies that can be implemented to help prepare for these changes and support positive behavior. Guest Presenter: Julie Riley, Louisiana Autism Spectrum and Related Disabilities (LASARD), Project Coordinator Date: Thursday, August 22, 2019 Time: 10:00 am – 11:00 am Audience: Parents, Caregivers, and Professionals of School-Aged Children/Students. Special Education FAQ - Can the school send home my child’s IEP for me to sign without a meeting? Can the school suspend my child with an IEP? What happens if I disagree with the IEP team? Can the school keep calling me to pick up my child due to meltdowns? Get answers to these questions, and more in our Special Education Frequently Asked Questions training. Co-Sponsor: Bayou Land Families Helping Families Date: Thursday, August 22, 2019 Time: 11:30 am – 12:30 pm Audience: Parents, Caregivers, and Professionals of School-Aged Children/Students. Anatomy of the IEP - Like a biology student, this presentation will dissect the parts of the IEP document and examine their functions individually, learning their meanings and application. It will provide constructive and practical tips to help create an IEP that supports all of the student's needs. We will explore the parent’s role in the IEP process and learn the basics of their child’s right to special education services, the process of developing special education plans, and the parent’s role. Co-Sponsor: Families Helping Families of Northeast Louisiana Date: Saturday, August 24, 2019 Time: 10:00 am – 11:00 am Audience: Parents, Caregivers, and Professionals of School-Aged Children/Students.
A U G U S T 2 0 1 9
INDEPENDENCE
What does independence mean? It depends on whom you ask. Here we offer perspectives from students, adults, and parents about what independence means to them:
"Yes, my child must fall before he can soar." - Stacey Gagnon, parent Read more
"Like all of us, I wanted to do more." - Corliss Lennon, self-advocate Read more
"I want to try to do it myself." - Amy, student and self-advocate
"I want to pee alone." - Loula Desu, self-advocate Read More
"Our challenge now is knowing when to hold her hand and knowing when to let her fly." - Becky Carey, parent Read more
Building Independence: Let Your Teen Grow We love the positive message offered by Rosemary Alexander, PhD, Director of the Texas Parent To Parent: When our children are babies and toddlers, it’s natural for us as parents to be a constant helpful presence in their lives. But parents of children with disabilities can find it especially hard to let their children do more things on their own as they get older. That’s why when they are still young it can be helpful to think about how we can gradually help them become more independent. We are not just preparing the way for them. We are also mentally preparing ourselves to take a step back and let our children explore new things or try new challenges. By confronting our fears and practicing positive steps, we can make the transition easier for ourselves and our children. Things to ask yourself What is challenging about letting a child who has disabilities or vulnerabilities grow up? What are your fears or worries about it? How have other parents in similar situations handled it? Are there small steps you can take now to encourage your child's independence? What are they? How would it feel to try some of them? How can you continue to grow and change in your role as parent? How would that help your child, yourself, and your family? What might stand in your way, and how will you work to overcome those challenges? Positive steps to practice Recognize your child's strengths, talents, and interests and work to build on them for the future. Try to understand how other people see your child and learn from that—they may see strengths you can’t see. Despite your child’s disabilities, set expectations for her to be a contributing member of your family. Give her chores at home, like the other members of your family. Treat her like the other children in the family as much as possible. Don't underestimate your child's normal desire to grow up and move on. Don't confuse your own needs with your child's needs; sometimes a child is actually ready for the next step, and it’s the parent who is afraid of moving forward. Find opportunities to let your child make choices about little things. Let your child know that you are there for her for as long as she needs you, but that you hope and expect your child to learn to become as independent as possible. En Español
"I've come to realize that independence is not a physical state, but rather a state of mind." - Jennifer Burgmann Read more
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. RAISE is funded by the US Department of Education to provide technical assistance to, and coordination of, the 7 PTI centers (RSA-PTIs). It represents collaboration between the nation's two Parent Technical Assistance Centers (PTAC) and the seven Regional PTACs.
“Dif-abilities” Tom believes that people with disabilities (or, rather difabilities, derived from the word "differences") should have an opportunity to start their own business. In this talk, Tom shares his thoughts on how we, as a society, can make it happen.
Thomas Cooney is Professor in Entrepreneurship at the Dublin Institute of Technology, Academic Director of the DIT Institute for Minority Entrepreneurship and Adjunct Professor at the University of Turku (Finland). He is a former President of the International Council for Small Business (2012-13) and of the European Council for Small Business (2009-11), and was Chair of the ICSB 2014 World Entrepreneurship Conference. He was a Member of the Department of Enterprise, Jobs and Innovation ‘Entrepreneurship Forum‘ (2013-14) and has been a policy advisor to the Irish Government, European Commission, OECD and other international organisations. He was a founding Director of Startup Ireland and works in various capacities with a range of businesses and not-for-profit organisations. This talk was given at a TEDx event using the TED conference format but independently organized by a local community. Learn more at http://ted.com/tedx
Learning systems change, teaching systems change, and changing systems.
A Mother's Journey:
My journey to advocacy began over 17 years ago when I was pregnant with our third child. I was told at 7 months pregnant by several doctors that I was carrying a dying child who had Down syndrome and non-immune hydrops. As my husband Mike and I prepared for the death of our child, we also had to prepare his sister Abby-Lynn (6) and his brother Cameron (4) letting them know that their brother would not be coming home to live with us. As the days and weeks passed, their brother continued to fight inside of me for his life. I made a promise to my unborn son and to God that if he survived that I would fight for him the rest of his life like he fought to survive. Doctors stated that he had less than a 1% chance of survival. No one was ready for Dustin Raphael Gary to be born that night on August 24, 2002. As our journey started with hernia surgery at 3 months old, open heart surgery at 5 months, many hospital stays for RSV and pneumonia as well as Early Steps, his therapists and others would ask me if I was willing to talk with other parents who were struggling to accept and understand what they needed to do for their children with disabilities. I spent many hours a week helping others and listening to their pain and emotions while trying to maintain a new balance to life with a newborn who has a disability and a sister and brother who also needed me. I began to meet others who were walking the same walk and started to surround myself with others who truly understood what our lives are like. I realized how important these people would become to not only me but also to my family. My older children would soon realize that they were not alone and that others also had siblings like their brother. This helped to make the transition in our family a little easier. When Dustin turned 3, I decided it was time to put him in an inclusive day care. I wanted him to be around his peers who did not have disabilities. I had been hearing stories of how the only place for him at 3 years old in the school system would be in a segregated classroom with other 3 – 6 years old with disabilities. I wanted Dustin to have the next 2 -3 years with children who did not have disabilities and would get to know him and respect him as just another kid. Up until this time, I had been working from home. I decided it was time to go back to work while he was at day care. I started working as the bookkeeper for Northshore Families Helping Families (NFHF) in early 2006. I listened to daily calls that were coming in from families who needed to know what supports and services were available, I started to get antsy and decided that I wanted to be out in the community helping families and educating the public on what NFHF did. I approached the Director who decided to create a Community Outreach Specialist and allowed me to have the position. I spent most of my time out in the community attending meetings throughout the region as well as the state learning as much as I could to share with staff and families. It is very scary trying to navigate the maze of services for those with disabilities with so much to learn and so many different agencies that provide services to our families. Around this same time, our family started to struggle with the balance of providing what Dustin needed as well as his older sister and his older brother. For the past 4 – 5 years, their lives had been nothing like most of their friends and classmates. Our family was fighting to maintain some normalcy while Abby was dancing several days per week after school and Cameron was involved in sports at our local park. Dustin wanted no part of leaving his home in the evening after being in day care during the day. The family divide was weighing heavy on all of us. We were blessed to reach out to a Psychologist who came to our home and TOLD us that we needed respite help immediately. Our family was falling apart but we could not see it. We had learned and become accustomed to “our new norm”. We had this. She got in touch with Florida Parishes Human Services Authority (FPHSA) so we could meet with them to discuss our situation. We were given 20 hours of respite per week for 1 year through Individual and Family Support (IFS) funds. I was so thrilled to know that there was something else out there for families who were “waiting on a waiting list for services”. I am talking about the Medicaid home and community-based waivers. At that time, waivers were offered as funding was available through the legislature on a first come first served basis. I started spreading the word about this wonderful funding of IFS for families in our state. Our local office started getting inundated with requests for support. As a result, the funding became limited and my 20 hours went down to 10 hours per week for the next 4 years until I got my waiver. I was okay with that because I knew that others needed the help also. Shortly after starting at NFHF, people kept pushing me to apply for a program called Partners in Policymaking. I did not feel ready to attend in 2007 so I told them that I would apply for the 2008 class. I was getting cold feet as the time approached but decided that it was a good time. I applied in 2007 and I was accepted into the class of 2008. (You can read more about Partners and what it is on page 29). I was told that it would be “life changing”. I had no idea what that meant. But four months into the program, I began to realize what it meant. I wanted it to go on forever. The bonding with your fellow classmates who were living the same life as you and the training was priceless. We were all there to learn how to be systems change agents. WOW! What an unbelievable training and journey. I did not want it to end. Imagine my surprise when I learned that they were looking for someone to take over the program because the coordinator was resigning. I applied and was accepted in July 2009 as the new Coordinator of the program. I continue to coordinate the program today. It has been such a wonderful experience to see so many people year after year become systems change agents because of this incredible program. It was around 2009 - 2010, when I started to become much more active in the legislative process and began spending time at the Capitol meeting with legislators to pass laws that impact individuals with disabilities. I became a LaCAN member and actively participated in legislative visits, round tables, disability rights days, action alerts and yellow shirt days at the Capitol letting them know about the needs and services for individuals with disabilities. In 2011, I was able to be a part of a very important bill carried by Senator Donahue become a law. This bill protects students with disabilities from restraints and seclusions in their schools. This same year Dustin’s name came up on the registry and was offered a home and community-based waiver. We waited 10 years for him to receive this waiver. They have since moved to a new process of offering waivers based on unmet needs instead of first come first serve. In 2012, I was honored to begin advocating alongside an amazing mom named Ashley McReynolds. We have continued to advocate not only at our regional levels individually but also at the state and federal level together. We continue to work together to ensure that individuals with disabilities are provided with the supports, services, and voices that are needed to guarantee them the dignity, respect, inclusion, acceptance and appreciation that they deserve. We have worked together on many legislative instruments that have become law the past 7 years. We represent families on ad hoc committees as well as many different stakeholder groups and boards in our state. We want others to get involved and join us as advocates to be a voice for those who need us to be there for them. I was honored to be able to accept alongside Ashley the 2018 Lillian Walker Award presented by The Arc. This award honors an individual or individuals who are dedicated to positively affecting the lives of people with disabilities and their families through legislative advocacy and/or public policy. In 2015 our world once again began to crumble as Dustin began struggling greatly with his behaviors. As another road block was put up, I can remember asking God, “Why do we have to deal with behaviors also?” He clearly asked me, “How can you help others if you have not lived it?" I fell to my knees in prayer and tears. It was another moment in my life when I realized the importance of His work that I was doing and why. Dustin’s behaviors started due to inconsistency across all of his settings as well as other factors that made it become necessary to create not only a Behavior Intervention Plan (BIP) at school but also a behavior plan for home. We started Applied Behavior Analysis (ABA) in the home 4-5 days per week after school. The Board-Certified Behavior Analyst (BCBA) also consulted with the school’s BCBA to attempt to have consistency across all of his settings. He spent 2 ½ years receiving ABA services to get him to a better place. It was a trying time but also very successful for him and our family. Cameron attended St. Paul’s school in Covington for his high school years. Dustin wanted to follow in his brother’s footsteps. He would constantly ask about attending St. Paul’s and he would even dress up in his brother’s uniform stating that he was going to St. Paul’s. It was heart breaking to have to tell him that he could not go there because they did not have a program for him. Imagine our surprise when St. Paul’s decided to start a program for students with disabilities at their school in August of 2017. We were still unsure that this program would work for Dustin so we sat the first year out. In January of 2018 after meeting with the school, we felt confident that it would work so we enrolled Dustin. He attended St. Paul’s during the 2018-2019 school year as a freshman. It was a wonderful year for him and it was the first time in YEARS that he truly felt accepted, included and appreciated. He became a part of the brotherhood of St. Paul’s and he truly felt like he belonged. I will continue to work with St. Paul’s to enhance their CORE pack program for students with disabilities. My goal and dream is to work with the Archdiocese of New Orleans to have more Catholic schools accept students with disabilities and to include them in every aspect of their schools. I have seen the success with my son at St. Paul’s. It can be done and it should be done in our Catholic schools. It has not been easy raising Dustin but he has taught us so much that we would have never experienced if the doctors had been right 17 years ago. Abby-Lynn and Cameron have always been fierce protectors of their brother. They are proud of who he is and who he has become. They will not tolerate others talking bad or negative about him or others with disabilities. They have always held him accountable for his actions and have high expectations for him just like his dad and I do. They fight just like any other siblings do and they have assured me that once I am gone they will take care of him. Mike has been there every step of the way to support our family and me as I travel to Baton Rouge to advocate for others and to coordinate the Partners in Policymaking program. He has never once complained about taking over for the past 10 years once a month while I coordinate the program. He supports me in all my advocacy efforts and has even listened to others who are struggling with getting answers to questions related to disabilities recommending that they reach out to me. I would not have been able to do what I have done all of these years without his support and I am very thankful for that. My world and the world of advocacy became a part of my life because of a child who I was told would not be here. Dustin has given me a whole new perspective on life. Dustin has been included in his community since he was born. He has changed many lives of those who have gotten to know him. I have watched people who have struggled with many different things in their lives have a different outlook because Dustin was in their world. I will continue to advocate for not only Dustin but also for all individuals with disabilities continuing to honor my promise to him and to God. Systems change is about changing systems not just the life of one individual. We still have so much work to do. Will you please join me in advocating for systems change?
By Liz Gary
Ashley McReynolds and Liz Gary received the 2018 Lillian Walker Award presented by The Arc.
Are you looking for a sustainable career or some community resources for your family? Come out to The Statewide Independent Living Council Inclusion Job and Resource Fair. Find out more about career opportunities and resources for the community by visiting the 40+ vendor tables. Get your career jump started today! For more information contact Jessica Lewis at 225-219-7552. This event is sponsored by The Statewide Independent Living Council and Healthy Blue. 10.09.2019 SILC Inclusion Job and Resource Fair Lake Charles | https://tinyurl.com/y5aqok4x 10.10.2019 SILC Inclusion Job and Resource Fair Baton Rouge | https://tinyurl.com/yxu72dqb 10.11.2019 SILC Inclusion Job and Resource Fair Lafayette | https://tinyurl.com/y5q7gxy2 10.16.2019 SILC Inclusion Job and Resource Fair- W. Monroe | https://tinyurl.com/y4cmlgwe 10.18.2019 SILC Inclusion Job and Resource Fair METAIRIE | https://tinyurl.com/y3a3xa9m 10.23.2019 SILC Inclusion Job and Resource Fair Shreveport | https://tinyurl.com/y5qkvvv9 10.30.2019 SILC Inclusion Job and Resource Fair Pineville | https://tinyurl.com/y37m6wd6 10.31.2019 SILC Inclusion Job and Resource Fair Hammond | https://tinyurl.com/y37jtcro
Congratulations to Families Helping Families of GNO's Board of Directors Chairman, Greg Brenan CPA, CCIFP on being selected as a 2019 CityBusiness Money Maker! Money Makers recognizes 50 professionals in the New Orleans area whose fiscal work has set the pace for their company and the region. Honorees were selected based on industry and community involvement, as well as their career achievements. Greg is a partner with Hannis T. Bourgeois, LLP and previously held the position of treasurer on the FHF of GNO's Board of Directors. Greg and his wife Darlene have two precious children and have been involved in many disability and health-related causes. He is also an avid Archbishop Rummel Raider fan and graduate. Join us in congratulating Greg on this honor!
Ready or Not - p.15
Presenting to Peers "Finding My Voice"
The Council of Chief State School Officers (CCSSO) Releases New Publication Focused on Students with Disabilities - The primary mechanism for ensuring students with disabilities receive the right educational content and rigor at the right moment in their education is the individualized education program (IEP). This document, Ensuring an Equitable Opportunity: Providing a High-Quality Education for Students with Disabilities, details policy and practice considerations around individualized education programs that chiefs and state education leaders can reflect upon and implement in ensuring all students, especially students with disabilities, have access to a high-quality education. View the full document on the CCSSO website. Getting Help Paying for Mental Illness Medications - Psychiatric medications are an important part of treatment for many people who live with a mental illness. They can improve symptoms and help promote recovery and wellness, but the price for medication can often be an obstacle. Luckily, there are some options you have for reducing the price of your medication. Student Privacy 101: - Student Privacy AT THE U.S. DEPARTMENT OF EDUCATION. Learn about #FERPA Family Educational Rights and Privacy Act on this short video HealthyChildren.org - These pages in English & Spanish provide guidance on developmental disabilities, milestones at various ages, and what parents and professionals need to know or do. Children Develop Better When You Let Them Be Bored, Psychologists Say - Why We Should Let Kids Be Bored...sometimes...That’s when people have the best ideas! In our media- and screen-saturated culture, it feels as like we’re always doing something, we can always be entertained. Development of Eating Skills for Children with Multiple Disabilities - Here are some suggestions to help children develop eating skills and independence at mealtime. Disability Etiquette - About 56.7 million Americans have a disability. The Americans with Disabilities Act #ADA was conceived with the goal of integrating people with disabilities into all aspects of life. Here are some basic tips. Teaching Bathing and Dressing Skills for Dual Diagnosis Children - As children grow and develop, they generally progress through learning a variety of self-help skills, such as dressing and undressing and taking a bath or shower unassisted. For your child who has a visual impairment and multiple disabilities, learning these skills may take longer than her typically developing siblings or age mates. How to Handle Tantrums and Meltdowns - Tips for helping children learn better ways to express powerful emotions from the Child Mind Institute.
Resources for FAMILIES & EDUCATORS
By Sharon Blackmon
PARTNERS IN POLICYMAKING Getting “Plugged In” to Advocacy
Did you ever find yourself wishing you knew more about how to advocate for yourself or your child with a disability? Did you ever find yourself thinking, “This isn’t fair! There should be a law!” Or have you perhaps wondered how you could (or IF you should) contact your representative or senator about a certain issue related to disability? That was me a few years ago. We were having terrible issues related to my son’s disability, and I was furious about unfair—and illegal--treatment but didn’t really know what to do about it. As my husband and I bumbled around on our own, trying to figure it all out, we finally met with our state representative and our senator about the issues we were having. While we did get legislation passed that helped our situation, looking back now I realize that we could have presented ourselves and our information more clearly if we’d been familiar with basic Advocacy 101 and how to affect systems change. Somewhere along the way, while still “bumbling” through it all, I discovered a program called Partners in Policymaking. “Partners” is a national leadership training program for people with developmental disabilities and parents of young children with developmental disabilities. It offers the most up-to-date knowledge about disability issues and teaches the competencies necessary for effective advocacy to influence public policy at all levels of government. It’s a bridge, in a way, between the people needing and using the services and the people who are creating public policy relevant to those services. In our state it is an initiative of the Louisiana Developmental Disabilities Council (DDC), and is a replicated model, which means that all states that offer the Partners course use the same general curriculum. Partners in Policymaking is completely free for participants and has been funded in Louisiana since 1991, with over 400 new advocates graduating the program to date. Participants engage in six months of training sessions, one weekend per month (Friday/Saturday), January through June. Nationally recognized speakers are brought in from all over the country to train budding advocates in topics such as History, Assistive Technology, Inclusive Education, The Legislative Process, Supported Employment, Supported Living, Community Building, and Systems Change Advocacy. Partners is a completely FREE (did I say that already??), all-expense-paid program, and there is even money for respite care during training weekends if the child with a disability does not have Waiver services. Classes range in size from about 15 to 25 participants, and are held in Baton Rouge. “Our goal is to create effective disability policy systems change agents,” says Liz Gary, Partners in Policymaking Coordinator. “Partners gives you the tools and resources necessary to advocate for Big Picture change—systemic changes.” Steven Nguyen is from the west bank of New Orleans. He is a powerful self-advocate with Spina Bifida and a 2015 graduate of the program. “Partners in Policymaking was a life changing experience for me,” says Nguyen. “It provided me the tools, knowledge and perspectives to invoke systems change and be a better advocate for myself and others with developmental disabilities.” “Partners in Policymaking has equipped me to go from passively watching events happening to actively working to help create a paradigm shift that supports and empowers individuals with disabilities to have the best quality of life possible,” says Patsy White, mother of five children ranging in age from 18-38. Her 21-year-old, Michael, has Prader-Willi Syndrome. White is a 2011 graduate of the Partners in Policymaking class, and has been actively advocating for her son and others in her St. Charles Parish community as well as at the state and federal levels since finishing the program. Let’s face it: raising a child with a disability—or growing up with a disability—has its own set of stressors: divorce rate is high among families living with a disability; many times there is isolation from friends and family when a child is diagnosed with a disability; moms in particular seem to struggle with no one in their circle understanding their plight. And then there is the almost daily stress of fighting for every single thing your child needs: school resources, social security, waiver services, medical benefits/Medicaid, public accessibility, inclusion in the community; the list seems to be unending, and the demands on the family are as well. Rebecca Fruge of Ville Platte completed the Partners class in June of this year. She has a six-year-old son with autism. “I don’t want other parents to get to the point I was with stress. It’s why I’m so passionate about paying it forward.” Since starting Partners in January, she has helped several friends and their families fight for needed services. “It’s not just about my son and the services he needed, it’s about the community.” Kelly Usery from Jefferson Parish was a classmate of Fruge, also completing Partners this summer. After fighting a huge battle over her child being able to keep her Medicaid benefits, she voiced her frustrations to some colleagues on the Patient Family Advisory Council at Children’s Hospital of New Orleans. They recommended the Partners program. Usery was looking for somewhere to focus her energies, and was very vocal about how things needed to change. Her 12-year-old daughter Sophia was born with multiple heart and orthopedic anomalies as well as problems with most of the organs in her body. She has undergone multiple surgeries for her heart, bones, and stomach, and has poor immunity due to being born without a spleen. She has fought for her young life multiple times, though you couldn’t tell it by looking at photos of the glowing beauty in her dance review costumes! “The more people who are aware of the hills and hurdles we’ve been through, the better,” says Usery. “It shouldn’t be so frustrating to get someone to help [Sophia], or just to be kind to her.” One of the best things about Partners in Policymaking, according to every graduate interviewed, is the comradery between classmates. “It’s the one place where I felt normal,” says Usery. “People got it. I could just be, and people got it. I didn’t have to explain how I felt or even what we were going through. I’ll forever be grateful for that.” I am a Partners Graduate from the Class of 2011, and it was life-changing for me and my family. I made life-long friends and “partners in crime,” who have supported my family and our advocacy efforts from all over the state, who have given me advice and encouraged me when I was just too battle-weary to fight another day. And the old adage, “Knowledge is Power” certainly rings true when it comes to disability advocacy: the more you know, the easier it is to get things done. Partners in Policymaking has certainly equipped, and continues to equip, people to advocate for systems and policy change for future generations.
2019 Partners Graduates
The deadline for applications for the 2020 class of Partners in Policymaking is September 30, 2019. For more information or to apply (*If the 2020 dates and application are not listed, check back. They are currently being confirmed and should be listed accurately soon.) For questions contact: La Developmental Disabilities Council 225-342-6804, 800-450-8108 or info@laddc.org Liz Gary, Partners in Policymaking Coordinator partners_coordinator@charter.net
AUGUST Awareness
MedicAlert Awareness Month - Not all medical bracelets are created equal and that’s why August has been designated as MedicAlert Awareness Month. National Breastfeeding Month - In recognition of National Breastfeeding Month (NBM), each year the USBC hosts a social media advocacy and/or outreach campaign inviting breastfeeding coalitions, member/partner organizations, and individual supporters to join online actions and conversations to build support for the policy and practice changes needed to build a "landscape of breastfeeding support." Read on for resources, tools, and weekly themes from 2019. National Wellness Month - Every August, Wellness Month empowers you to fall in love with self-care (and yourself in the process!) Family Fun Month - Each year, Family Fun Month is celebrated throughout the month of August. It is the opportune time to enjoy family with extra fun and activities. Happiness Happens Month - August 8 is Happiness Happens Day, a day to celebrate all things happy. National Immunization Awareness Month - (NIAM) is an annual observance held in August to highlight the importance of vaccination for people of all ages. Communities across the country use the month each year to raise awareness about the important role vaccines play in preventing serious, sometimes deadly, diseases across the lifespan.
National Eye Exam Month | Children’s Eye Health and Safety Month - For many of us, July marks the halfway point of summer vacation and soon preparations for returning to school will begin. Getting a vision exam is a part of that process. Healthy vision is key to a great start to school!
Spinal Muscular Atrophy Awareness Month - The SMA community officially recognizes August as Spinal Muscular Atrophy Awareness Month, an effort that Cure SMA has been coordinating since 1996. August is a great time to spotlight the work our community does year-round to raise awareness of and funds for SMA. In addition to our usual work – hosting and attending events, advocating at state and local legislatures, sharing information about SMA, using social media to raise awareness, and more – many families and chapters plan special events or efforts around SMA Awareness Month.
Updates from the U.S. Department of Education
Each year, the Office of Special Education Programs (OSEP) conducts a Symposia Series to provide high-quality, timely, and evidence-based strategies focused on improving performance in a specific topic. The 2019 OSEP Symposia Series will focus on strategies to attract, prepare, and retain effective personnel -- general and special education teachers, early childhood personnel, and related services providers -- who have the knowledge and skills needed to provide effective instruction, interventions, supports, and services to children with disabilities. This is a topic that not only impacts every state but also disproportionately effects children with disabilities and their families due to the many unfilled positions and high attrition rates among special education teachers, early childhood personnel, and related services providers. The 2019 OSEP Symposia Series will explore the factors contributing to personnel shortages in special education, early intervention, early childhood special education, and related services; highlight current research on this topic; and explore promising practices that are making a difference in programs, districts, and states. Please save the dates and join us as we explore this important topic. Symposium 1: April 8, 2019 focused on strategies for Preparing Personnel to Serve Children with Disabilities. Archived recording, PowerPoint, Transcript, Questions and Answers. Symposium 2: May 15, 2019 focused on strategies for Retaining Effective Personnel to Serve Children with Disabilities. Archived recording, PowerPoint, Transcript, Question and Answers. Save the Date! Symposium 3: August 15, 2019 will focus on strategies for Attracting Personnel to Serve Children with Disabilities.
Louisiana is a wonderful place to live. All year long, there are so many attractions, festivals, parades, arts, museums, and events going on around our beautiful state. There’s never a dull moment! Inside this guide you will find special needs summer camps and many ideas for things to do and places to visit with your family throughout the summer. From museums, nature centers, and theaters… to activities at home. You will find endless possibilities for enjoyment, learning, and relaxation. This guide is meant to be an Internet resource. Please review these offerings to determine if they suit the needs of your family.
Welcome to the Wonderful World of Family Fun!
The Louisiana Department of Education is committed to helping families find the right school or early childhood center for their children, and providing them with helpful information about Louisiana’s schools. The Louisiana School Finder is an interactive, online tool that provides families with: school performance scores and early childhood performance ratings to show how well schools and centers are preparing students for the next grade-level; basic information about schools and centers such as their address, website, hours of operation, and principal or director’s name; and listings of course offerings, clubs, enrichment and extracurricular activities. To find out information about schools and early childhood centers in your area, visit www.louisianaschools.com, and type in a school or center’s name, or your zip code.
The Louisiana Parent Training and Information Center (LaPTIC) is a program of Families Helping Families of GNO and a grant from the US Department of Education; Office of Special Education (OSEP) as Louisiana's official and only statewide federally funded Parent Training and Information Center.
Any information provided by Families Helping Families of Greater New Orleans (FHF) and/or Louisiana Parent Training and Information Center (LaPTIC), its staff, and/or its volunteers is intended for informational and educational purposes only. Any information expressed or implied is not intended nor should be construed as legal, medical, or other professional advice. FHF and/or LaPTIC does not render legal, medical, or professional advice or recommendations; nor is legal, medical, or other professional advice implied by any information given. Any information provided should not replace consultations with qualified legal, educational, healthcare, or other professionals to meet individual or professional needs. Reference to any program, service, therapy, or treatment option does not imply endorsement by FHF and/or LaPTIC or by its organizational staff/members and should not be construed as such.
e-Learning Mini Modules are formatted for all devices so even if you are at a ball game, dance practice or waiting for your dinner to arrive in a restaurant, you can log onto our website and watch one of our e-Learning Mini Modules in approximately 10 minutes. That's right - you only need about 10 minutes! CLICK HERE to go to our website and learn more about the e-Learning Modules!
700 Hickory Avenue Harahan, LA 70123 504-888-9111 800-766-7736 504-353-2350 fax info@fhfofgno.org fhfofgno.org
The Office for Citizens with Developmental Disabilities (OCDD) has four developmental disability home and community-based waivers, New Opportunities Waiver (NOW), Residential Options Waiver (ROW), Supports Waiver, and Children's Choice Waiver have now been operationalized to a tiered waiver system of service delivery, which will allow for individuals to be supported in the most appropriate waiver. To learn more, click here.
