Free Webinars and Training P.16
TIMES
MAGAZINE
Exceptional
STRATEGIES FOR SUCCESSFUL TOILET training p.5
What's Going ON?
From the Executive Director, Mary Jacob Always Presume Competence P.4
ISSUE 12
FEBRUARY 2019
Marcus Johnson's Journey P.21
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
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
February 2019
ON THE COVER: Elaine Harmon and her son, Marcus Johnson
Exceptional Times
04 Always Presume Competence 05 Strategies for Successful Toilet Training 10 What is Mentoring and Why it Matters? 12 Jefferson Parish Regional Advisory Council 13 Programs that Support Early Learning 14 Understanding Webtime Entry for Individuals Who Use Self-Direction 15 Jefferson Parish Community Resource Fair 16 What's Going On? 19 U.S. Department of Education Initiative- Inappropriate Use of Restraint and Seclusion to Protect Children with Disabilities 21 Cover Story - Marcus Johnson's Journey 24 Statewide INDEPENDENT Living Council - Advocacy. Accessibility. Independence. 25 Resources for Families and Professionals 26 Louisiana School Finder
CONTENTS
Executive Director Mary Jacob P.4
From the
Mary Jacob
Executive Director
Last month was a bit crazy. It wasn’t bad enough our beloved Saints were robbed a trip to their second Super Bowl – but I was reading more comments than usual on social media and receiving more calls than normal from parents questioning some things they were being told. Crazy things. I realized we had recently had a blood moon and was wondering if the stars went out of alignment. When I hear things that make you smack your head against the wall, for me, it’s like getting into a time machine and traveling back to 1992 – the year a teacher looked at me and said, “she may never learn how to read.” I know the shock on my face must have been apparent. However, when did we write off first graders from learning to read? Did she really just tell me she might never learn how to read? This past month I’ve heard the following, “Our education model doesn’t do inclusion”. “No, you can’t have access to your child’s education records.” “I don’t have to do a bullying investigation since it wasn’t reported properly.” “Go ahead and sue us.” “Your child has Down Syndrome – do you understand he won’t learn with regular kids.” and “If you want your child to attend aftercare, you will need to provide his own para.” So with all this craziness, this made me go to social media and ask you, my readers and followers – what are some of the craziest things you’ve been told by someone in the education field. Here’s to the other parents that have been told crazy things about their children. I salute you all and thank you for sharing your crazy comments. Don’t you think he’d be more comfortable with “his own” kind? Well, she seems to have selective ADHD. I polled the other students and they don’t want him here. Oh, he’ll never learn to read, he has a mild mental disability. She is so short. Why is her head so big? She must only have a little Down Syndrome and he has a lot. – (Siblings with Down Syndrome) Just place him somewhere to fix his behavior and then we’ll worry about educating him. It might take a little longer, but we think he can learn to read. – (Nonverbal child that already knows how to read and school asks, how you know if he’s nonverbal?) You don’t want him to get an IEP. You want him to graduate. One day they’ll all just fly away. (Early Interventionist mimicking the stereotypical hand flapping behavior ) None of the other kids like her and I don’t blame them. If we don’t find a classification he qualifies for, he’ll fall through the cracks. She can’t have autism. She makes eye contact. We don’t do inclusion here. Kids like him don’t graduate. After reading this list I hope it evokes a little anger that makes you want to prove that children with disabilities CAN be successful. Many children with disabilities are the real overachievers – as they’ve achieved things many educators thought was never possible. So never give up on the possibilities and as Kathy Snow would say, always presume competence.
Always Presume Competence
continued on p. 20
Strategies
Toilet training can be daunting for any parent, especially a parent of a child with a disability. However, if armed with a plan and a toolbox of strategies, toilet training can in fact be a successful experience. In order to address this topic, I have enlisted Katie Barlow, BCBA (known lovingly to me as the potty training guru) to co-write this article with me. Together, we have provided the general progression we recommend to toilet train any child as well as the top strategies that we have found to be successful. Disclaimer It is important during the toilet training process to monitor your child for any potential medical concerns. If your child does not respond well to toileting and holds their urine for too long, they could be at risk for a urinary tract infection. In addition, some children may hold in their stool for multiple days while toilet training, which can also be hazardous for their health. Always keep track of your child’s elimination, and consult with your pediatrician or a pediatric gastroenterologist if you have any concerns. Parental/Family Readiness Toilet training your child is a commitment. It takes time, consistency and dedication of all family members and caregivers to complete the process. Starting toilet training when you as a parent know you cannot dedicate your full attention to the process will only set you and your child up for frustration and potential failure. Choose a time for your child when you are ready to make toileting a priority in your family. The most important advice we have to give regarding use of any strategy below is this: consistency is key. Once your family determines the specifics about your child’s schedule, routine, and rewards - it must be implemented consistently, with all family members, teachers and therapists across all environments. Progress can be negatively affected if the child is led through a different routine each time, or if he or she is treated differently depending on who takes them to the bathroom. Collaboration of all individuals who care for your child is vital for the success of the toilet training process. Child Readiness Before beginning toilet training, parents will need to assess if their child is physiologically able to control their bladder and bowels. Your pediatrician can help with this as well, but generally the first sign to look for is if your child is staying dry for a good length of time. Check your child’s diaper throughout the day and record the times that they are wet. This will provide you information about your child’s natural schedule, and allow you to assess whether or not they are periodically eliminating all at once. As a general rule, you want to make sure your child is staying dry for at least one hour before introducing any type of toilet training program. In addition to physiological readiness, the development of some basic language, gross motor, and fine motor skills is preferable before starting the training process. First, your child will need to be able to follow one step directions such as “pull pants down” and “sit down.” Next, your child will need the postural control and balance to sit on the toilet for a few minutes at a time. Lastly, since toilet training involves some basic dressing skills, your child will also need to demonstrate the fine motor ability to unfasten/fasten and pull their pants up/down, as well as to wipe after elimination. Your child may need assistance with some of the steps in this routine but should be able to do most of them independently. Of course, there are times when adaptations can be provided if your child has not yet attained these skills due to a communication or motor limitation. Or, your child may just need a little more time before being ready to start. Talk to your therapy team in order to determine any pre-toileting goals before beginning the training process. Introduce the Concept Many children with disabilities have a difficult time with any change in their schedule or routine. Toileting is a very big change! Therefore, preparing your child with what exactly to expect can help to decrease anxiety surrounding the process. Social stories are a great way to expose children to toileting, and there are many children’s books with a toilet training theme. Parents can also use picture schedules to help make the concept less conceptual and more visually understandable. Helping your child become familiar with the routine is a step towards being prepared for the big change. Before starting to toilet train, parents can practice the components with their child in isolation before any expectation of elimination. For example, in the morning while getting dressed, work with your child on pulling their pants up and down. Change your child’s diaper in the bathroom to familiarize with the environment. Add a handwashing routine after diaper changes to practice the steps of that necessary hygiene practice. Make a point throughout the day to simply practice sitting on the toilet, even with clothes on at first, working towards clothing pulled down. This part may take some time depending on the child, but it will be worth it when it comes time to put all these steps together during the toileting process. Environment Setting up the bathroom environment with a few basic items can help the process go more smoothly for your child. If choosing to teach sitting or standing first, we recommend sitting because it is more applicable for bowel movements. Foot stools can provide postural support while your child is sitting and help to provide a favorable anatomical position for elimination. A child sized insert for the toilet seat can also help to make your child more comfortable, and some even come with handles for added stability. Ensure that the bathroom is accessible for your child and that they can reach the toilet paper, sink, and soap for use. Visual cues may be used to help identify where to sit, what faucet to turn on, or what to use to wipe. An occupational therapist can recommend environmental adaptations if your child’s needs are not currently compatible with your bathroom space. Language Keeping instructions simple and concise is the best strategy for effective communication during toilet training. For example, using “sit down” versus “let’s sit down and go tinkle in the potty” will keep your direction clear and to the point. Make sure your child has fully completed one instruction before you give them another one. In addition, always refer to toileting with a consistent term such as going “potty,” “teetee,” “peepee,” “tinkle” etc. to avoid any confusion. You can pair the word you chose with the American Sign Language sign for “bathroom,” or also use a picture to communicate when it is time to go. If your child uses a communication device, make sure to work with your speech therapist to discuss adding related vocabulary to their program. Behavioral Strategies Implementing a few behavioral strategies from the beginning can help your child make the connection that elimination in the toilet is the action you want. First, instead of asking a child, “are you ready to go potty?” tell a child it’s time to go to the bathroom. This sets the expectation clearly. Using a timer to indicate when it is time to make a trip to the bathroom can both provide the parent with a reminder and the child with a clear cue for the transition. In addition, timers are helpful for indicating how long you would like your child to sit on the toilet. As mentioned before, visual schedules can help a child sequence the steps and even check off each step as they complete it, and timers can be used in combination with these visuals for added clarity. When it comes to elimination on the toilet, rewards are a great way to help motivate your child to complete the desired behavior. Whether they are used for practicing sitting or actually eliminating in the toilet, rewards indicate to your child that they successfully completed the action you wanted them to. Using a reward that your child does not have access to regularly (a certain candy, a special toy) will be especially powerful in establishing motivation. For example, “if I tinkle in the potty, I get a skittle - and I want that skittle!” These rewards can gradually be scaled back as your child becomes more and more successful. If your child has an accident, the best response changes with your child’s specific behavioral needs. Some general recommendations include stating “we peepee in the potty” before changing them, sitting them on the toilet after, and minimizing the amount of attention the child gets from the accident. If you would like more information or have concerns about any additional behaviors of your child during toileting, a Board Certified Behavioral Analyst (BCBA) can create and implement a behavioral plan for your child. Sensory Strategies The bathroom is a place where loud sounds are embedded into the toileting process. In order to give a child a sense of control, give your child a choice of whether they would like to flush the toilet or for you to flush it once they are further away. In the age of automatic toilets, sinks, and hand dryers, public restrooms can be a place of unexpected and potentially starling sounds. When in a public place, noise canceling headphones can help with the environment and the noises of others. Another trick for those pesky automatic toilets and sinks is to bring a piece of opaque tape to temporarily cover up the sensor while your child uses the toilet, preventing unexpected noises. For a child with sensory sensitivity, set up your home bathroom environment with calming smells, lights, and sounds. Using dimmer lights can help a child with visual oversensitivity, and odor eliminating candles or drops for the toilet bowl can help with a child who is sensitive to the potential pungent bathroom smells. Completing a calming activity after completion of your toileting routine may help to regulate your child before going about the rest of their day. In addition to environmental adaptations, completing multisensory activities with your child prior to toilet training can help teach the concepts of wet vs. dry and dirty vs. clean. Tactile manipulation activities such as shaving cream play, food play, or cooking can also double as an opportunity to practice “wiping” by cleaning the mess up with a paper towel. An occupational therapist can assist with additional recommendations to address your child’s specific sensory needs. Bowel Movements Toilet training for bowel movements (BM) is inherently different than for urination. One general recommendation on toilet training for bowel movements is to keep track of your child’s BM schedule. When you start toilet training for this, have your child sit on the toilet for a longer duration during their regular BM times. In addition, many children demonstrate precursor behaviors to having a bowel movement. Catch these times and bring your child to sit on the toilet and be ready with that reward if they end up going in the toilet. One common report we get from parents is that a child will toilet train for urination first, and will still request a diaper to have BMs. If your child is not ready to make the big jump to sitting on the toilet for BMs, pre-BM toilet training activities can help. Using the BM schedule you have made, try to catch your child right before or while in the act of having a BM in their diaper. Bring them as close to the bathroom as you can, and let them complete the BM there. Repeat this process, bringing them closer to the bathroom each time until they are having BMs in their diaper in the bathroom. Then, work on moving your child closer to the toilet, until they can stand right next to or even sit on the toilet, still wearing their diaper. Next, have your child start emptying their stool into the toilet from their diaper, and flushing the toilet. Make sure you give your child their reward for each positive step they make, even if it is a small step. This process is to help your child gradually become more comfortable with the concept, as making very small changes often helps with a routine oriented or rigid child. In addition to these strategies, think about how a child is positioned when having a bowel movement in a diaper; often standing or squatting. The transition to sitting can be difficult from purely a positional standpoint, so provide a foot stool so your child can still assume a semi-squat position while sitting on the toilet. Learning how to have a bowel movement on the toilet is often difficult and can be complex due to a child’s specific behavioral and sensory needs. If you have additional questions or concerns, consult your BCBA or OT for child specific recommendations regarding bowel movements. Final Thoughts Toilet training is a marathon, not a race. Keep in mind that every child’s situation is unique, so what works well for one may not for another. It is reasonable if your child still needs to wear a diaper for long car rides, naps, and at night. Keep in mind that your child may not able to communicate the need to go to the bathroom, so always be aware of your child’s bathroom schedule to maintain your progress. If you have specific questions about toilet training and your child, feel free to reach out to your therapy team. These strategies can be helpful but child specific recommendations can make all the difference for a successful toilet training experience. Resources The OT Toolbox: Tips for How to Teach Kids Potty Training Potty Training Books for Kids Toilet Training in Less Than a Day by Nathan H. Azrin, Ph.d. and Richard M. Foxx, Ph.d. 3 Day Potty Training by Lora Jensen If you have concerns and would like to reach out, feel free to email us at rconnick@cranerehab.com or kbarlow@cranerehab.com.
for Successful Toilet Training
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 https://fingertips.home.blog/ or on Facebook @fingertipsblog.
What is and
Youth mentoring can take many different forms. It can take place one-on-one through personal face-to-face meetings, in groups, through email exchanges, telephone conversations, letters, or any other form of communication. It can be done through schools, or at work or through community agencies. The goals of a mentoring relationship are as varied as the individuals themselves. Through community-based mentoring, volunteers are matched with youth, with a general focus on building relationships and enhancing students' social activities. In school-based mentoring, adults or older peers are matched with students. Typically, activities are centered on academic, athletic or social engagement at school. In some cases, employers organize mentoring programs, with a group of employee-mentors matched with students in a specific classroom or school. E-mentoring (telementoring) is a newer form of mentoring in which the mentor and mentee, communicate via email. E-mentoring is generally school-based and frequently focuses on career or academic achievement and improvement. Want to learn more? We love this easy-to-use 2005 report issued by Partners for Youth with Disabilities. Don’t let the publication date fool you - it is chock full of useful information on mentoring models, best practice, how to start and maintain an effective mentoring program, how to evaluate a mentoring program and how to use mentoring to promote positive transition to employment and post-secondary settings. There is even an entire chapter (24 pages) dedicated to e-mentoring strategies, especially useful in rural areas or when transportation or language barriers present a challenge. Why Mentoring is Important Did you know that one in three young adults will grow up without a mentor? Young adults at risk of falling off track but who have a mentor are: 52% less likely to skip a day of school. 46% less likely to start using illegal drugs. 55% more likely to enroll in college. 78% more likely to volunteer on a regular basis. 130% more likely to hold a leadership position. (Data from the National Mentoring Partnership) Youth-Initiated Mentoring “Mentorship is something you do for yourself.” In this TEDx presentation, Doug Stewart describes his “alarm clock moment” when he suddenly realized that he was capable of doing more. Faced with challenges of dyslexia, ADHD, and narcolepsy, he seeks out mentors everywhere that can help him become the best version of himself.
WHY It MATTERS?
RAISE Center
Tools That Work
5 1/2 Mentors that will change your life | Doug Stewart | TEDxRaleigh
Social Capital Map It seems so simple. A pie chart. This easy-to-use visual tool produced by The National Mentoring Partnership can help students take a look at who they know and how those relationships can help them. Mentoring for Inclusion This hour-long webinar from the National Disability Mentoring Coalition looks at how to use mentoring as a strategy to remove barriers to full inclusion in jobs, schools, and the community. Sometimes, it is not what you know, but who you know. In addition to having a mentor, it can be very useful to learn how to ‘network.’ We love these five simple networking tips from Sandy Lovejoy, a contributing writer at Monster.com. Step 1: List Potential Prospects - Write down the name of anyone you know or have heard about in the field or close to the field you want to work in. Then make lists of everyone you can think of who will support your efforts to find a job, no matter what work they might do. Your hairdresser knows many people, all of whom talk about their work while being beautified. Your neighbor's father-in-law may be the one who supplies a crucial name. Step 2: Contact as Many of Those People as Possible - A short conversation, a telephone message saying that you're looking for work and would appreciate a call back if they are aware of anyone looking to fill a position or an email to your contact list could be all it takes. Step 3: Be Clear About What You Want - You should be able to articulate what you can bring to the job and what you hope to get from it. Having your own clarity makes you more convincing to everyone you talk to. Consider the concerns you have about your disability (if any) as well as the concerns you think others might have, and how you will respond to them. Write out your goals, your strengths, and your plans for overcoming any obstacles. This gives you more conviction when talking to others. Step 4: Do Some Informational Interviewing - Find one or more companies you think might offer the type of work you hope to do and that seem to have a culture you would feel comfortable in. If you don't know of any when you begin your search, you can mention that you're looking for such a place when you talk to your contact list. Contact the receptionist or someone who knows the organization and ask who would be the best person to talk to for the position you're interested in. Informational interviews are important for several reasons. Yes, you'll find out a lot about different companies and potential jobs, but you'll also learn how to present yourself and your skills during an actual job interview. Think of informational interviews as rehearsals for interviews that count. And remember that with each informational interview, you've just made another important networking contact. Step 5: Keep Your Eyes and Ears Open - Have the courage to ask people to introduce you to someone who might be instrumental in getting you in the door for an interview. Those in a position to hire are happy to hear from people they know and respect about prospects. Resources Paving the Way to Work The TARGET Center Help for Mentors National Disability Mentoring Coalition DREAM Mentoring.org National Mentoring Resource Center 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.
Networking Tips
Mentorship isn’t something that is done to you. Rather, mentorship is something you do for yourself, with the help of other people. Doug has unlocked the secret of mentorship in the digital age and has used it to develop more (and faster) than he ever thought possible.
Do you want to learn more about youth-initiated mentoring? Check out this webinar by the National Mentoring Resource Center featuring Sarah Schwartz, Ph.D., Assistant Professor, Department of Psychology, at Suffolk University; Whitney Baker, Director of Operations at MENTOR Nebraska; and Ellie Cuifalo, Youth Mentor Program Coordinator, at Klingberg Family Centers.
“Show me a successful individual and I’ll show you someone who had real positive influences in his or her life. I don’t care what you do for a living—if you do it well, I’m sure there was someone cheering you on or showing the way. A mentor.” ~ Denzel Washington
The following meetings will be held at Jefferson Parish Human Services Authority 1500 River Oaks Road, Suite 200, Harahan July 30, 2019
Regional Advisory Committee (RAC) Meetings
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.
The following meetings will be held at Jefferson Parish Human Services Authority 5001 West Bank Expy., Room 118, Marrero April 30, 2019 | October 29, 2019
continued on p.18
ED Programs ED has a history of funding early learning programs. Some of the current investments include: Preschool Development Grants Supports States to (1) build or enhance a preschool program infrastructure that would enable the delivery of high-quality preschool services to children, and (2) expand high-quality preschool programs in targeted communities that would serve as models for expanding preschool to all 4-year-olds from low- and moderate-income families. Race to the Top—Early Learning Challenge Supports states' efforts to create comprehensive plans to build coordinated early learning and development systems and improve programs so that more children, especially those with high needs, will enter kindergarten ready to succeed. IDEA Part C State Grants for Infants and Toddlers Ensures that appropriate early intervention services are made available to infants and toddlers with disabilities and their families. IDEA Part B Preschool State Grants Provides special education and related services for children with disabilities ages 3 through 5. IDEA Part B State Grants Provides special education and related services for children with disabilities ages 3 through 21. The Title I Program Supports school and community-based preschool and K-3rd grade programs. Promise Neighborhoods Supports planning grants for communities to build on the work of the Harlem Children's Zone. Investing in Innovation (i3) Supports improving student achievement and attainment in order to expand the implementation of, and investment in, innovative practices. Striving Readers Comprehensive Literacy Program Develops and supports a comprehensive literacy initiative from birth through grade 12. Ready to Learn Television Supports the development of educational programming and materials to increase school readiness for young children. 21st Century Community Learning Centers Supports community learning centers to provide academic enrichment opportunities during non-school hours for young children, particularly students who attend high-poverty and low-performing schools. Demonstration Grants for Indian Children Supports school readiness projects for three- and four-year-old Indian children. Child Care Access Means Parents in School Program Supports the participation of low-income parents in postsecondary education through the provision of campus-based child care services. Partnering with the U.S. Department of Health and Human Services ED is committed to working closely with the Department of Health and Human Services (HHS) to help States create coherent systems of early learning from birth through 3rd grade. The two agencies have been working together on a number of initiatives: Race to the Top – Early Learning Challenge Program Jointly administered by the two Departments, this program will set a high bar and reward States with the strongest plans to improve the quality of early learning and development programs. Interagency Policy Board (IPB) on Early Learning The IPB's mission is to improve the quality of early learning programs and outcomes for young children; increase the coordination of research, technical assistance and data systems; and advance the effectiveness of the early learning workforce among the major federally funded early learning programs across the two Departments. Administration for Children and Families
Programs that Support Early Learning
Free WEBINARS
What's Going On?
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: Thursday February 7, 2019 Time: 10:00 a.m. – 11:00 a.m. Audience: Parents, Caregivers, and Professionals of School-Aged Children/Students. Understanding the Importance of Inclusion - Why is inclusion of children with disabilities in schools, classrooms, and communities important? This webinar answers that question. It explores what inclusion is and is not, who’s involved in making meaningful inclusion successful, and its underpinnings in federal law. Co-Sponsor: Families Helping Families of Greater Baton Rouge Date: Thursday, February 7, 2019 Time: 11:30 a.m. – 12:30 p.m. 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 at the Crossroads Date: Tuesday, February 12, 2019 Time: 11:00 a.m. – 12:00 p.m. Audience: Parents, Caregivers, and Professionals of School-Aged Children/Students. Accommodations vs. Modifications - Meeting after meeting, parents and teachers use the words “accommodation” and “modification” almost interchangeably when discussing IEP's 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 are accommodations and modifications included in IEP? Which accommodations are provided for state testing? Accommodations and Modifications can be a game changer for your child. Co-Sponsor: Families Helping Families of Southwest Louisiana Date: Tuesday, February 12, 2019 Time: 7:00 p.m. - 8:00 p.m. Audience: Parents, Caregivers, and Professionals of School-Aged Children/Students. 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: Bayou Land Families Helping Families Date: Friday, February 15, 2019 Time: 10:00 a.m. – 11:00 a.m. Audience: Parents, Caregivers, and Professionals of School-Aged Children/Students. Anatomy of an 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. Date: Saturday, February 16, 2019 Time: 11:00 a.m. – 12:00 p.m. Audience: Parents, Caregivers, and Professionals of School-Aged Children/Students. IEP versus 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. Co-Sponsor: Families Helping Families of Southwest Louisiana Date: Saturday, February 16, 2019 Time: 12:30 p.m. – 1:30 p.m. Audience: Parents, Caregivers, and Professionals of School-Aged Children/Students. Do You Know Your Rights if You Disagree? - Since the first federal law dealing with the education of students with disabilities in public schools passed, legal rights for parents has been an important part of the law. These legal rights for parents generally referred to as “procedural safeguards”, are a critical component to The Individuals with Disabilities Education Act. The purpose of this webinar is to let parents know they have legal rights and to help them understand these rights and what to do when you disagree with the school. Co-Sponsor: Bayou Land Families Helping Families Date: Wednesday, February 20, 2019 Time: 10:00 a.m. – 11:00 a.m. Audience: Parents, Caregivers, and Professionals of School-Aged Children/Students. Extended School Year (ESY) Services: Summer IEP 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. Co-Sponsor: Families Helping Families of Northeast Louisiana Date: Wednesday, February 20, 2019 Time: 9:00 p.m. – 10:00 p.m. Audience: Parents, Caregivers, and Professionals of School-Aged Children/Students. Advocacy 101 - As parents or advocates of individuals with disabilities, knowing how to advocate effectively is critical. Advocacy is defined as taking action in support or opposition of a cause or issue. Advocacy can be done through education, outreach, and grassroots organizing. This training will provide you the basics on how to become an effective advocate. Co-Sponsor: Families Helping Families at the Crossroads Date: Tuesday, February 26, 2019 Time: 11:00 a.m. – 12:00 p.m. Audience: Parents, Caregivers, and Professionals of School-Aged Children/Students.
F E B R U A R Y 2 0 1 9
Early Learning p.13
U.S. Department of Education Announces Initiative to Address the Inappropriate Use of Restraint and Seclusion to Protect Children with Disabilities, Ensure Compliance with Federal Laws
JANUARY 17, 2019 Contact: Press Release, (202) 401-1576, press@ed.gov WASHINGTON – U.S. Secretary of Education Betsy DeVos announced today that the U.S. Department of Education will launch an initiative to address the possible inappropriate use of restraint and seclusion in our nation’s schools. The Office for Civil Rights (OCR), in partnership with the Office of Special Education and Rehabilitative Services (OSERS), will oversee this proactive approach which will protect students with disabilities by providing technical assistance and support to schools, districts, and state education agencies, and strengthen enforcement activities. “This initiative will not only allow us to support children with disabilities, but will also provide technical assistance to help meet the professional learning needs of those within the system serving students,” Secretary DeVos said. “The only way to ensure the success of all children with disabilities is to meet the needs of each child with a disability. This initiative furthers that important mission.” The Department’s Initiative to Address the Inappropriate Use of Restraint and Seclusion will not only include components that help schools and districts understand how federal law applies to the use of restraint and seclusion, but the Department will also support schools seeking resources and information on the appropriate use of interventions and supports to address the behavioral needs of students with disabilities. The Department’s initiative will include the following three components: Compliance Reviews OCR’s 12 regional offices will conduct compliance reviews on recipients’ use of restraint and seclusion on children with disabilities. Compliance reviews will focus on the possible inappropriate use of restraint and seclusion, and the effect of such practices on the school’s obligation to provide a free appropriate public education (FAPE) for all children with disabilities. OCR will conduct compliance reviews and work with public schools to correct noncompliance. CRDC Data Collection OCR will conduct data quality reviews and work directly with school districts to review and improve restraint and seclusion data submitted as a part of the Civil Rights Data Collection (CRDC). OCR will provide technical assistance to schools on data quality, to ensure that they are collecting and reporting accurate data relating to the use of restraint and seclusion. Support for Recipients OCR will provide technical assistance to public schools on the legal requirements of Section 504 of the Rehabilitation Act relating to the use of restraint and seclusion on children with disabilities. OCR will partner with OSERS to provide joint technical assistance to support recipients in understanding how Section 504, Title II, and the Individuals with Disabilities Education Act (IDEA) informs the development and implementation of policies governing the use of restraint and seclusion. OSERS will support recipients identified by OCR through compliance reviews or through the complaint resolution process to ensure they have access to appropriate technical assistance and support. OSERS will support schools to ensure they have access to technical assistance and available resources as they establish or enhance environments where the implementation of interventions and supports reduces the need for reliance on less effective and potentially dangerous practices. OSERS will consider how current investments may be utilized to provide support and training to schools, districts, and states. OSERS and OCR will jointly plan and conduct webinars for interested parties related to the use of appropriate interventions and supports for all students. “In collaboration with OSERS, we will work to ensure that recipients are aware of their legal obligation under Section 504 and Title II, and that we have accurate information and data on the use of restraint and seclusion,” said Assistant Secretary for Civil Rights Kenneth L. Marcus. “Working directly with schools and districts provides an excellent opportunity to help recipients and support their efforts toward compliance to ensure that all children have an opportunity to succeed in the classroom.” “OSERS has long focused on improving results and outcomes for children with disabilities,” said Assistant Secretary for Special Education and Rehabilitative Services Johnny W. Collett. “Rethinking special education and challenging the status quo includes examining systems that keep us from making the kind of improvement we know is necessary. This initiative furthers our ongoing efforts to examine any practice that limits opportunities for children with disabilities.”
Competence - p.4
Children with disabilities CAN be SUCCESSFUL
By Elaine Harmon
Marcus Johnson's
Marcus Johnson was born on November 10, 1998, and delivered by C-section. He was a happy and healthy boy with no medical concerns. During Marcus’ first 17 months, he met all of his developmental milestones, was active, playful, and so sweet. My concern began at the tender age of one and a half when Marcus started showing signs of an enlarged naval (an umbilical hernia). As time went by, his hernia bulge began growing larger. During a doctor visit, I was advised that he would need to have surgery to remove it. The surgery was scheduled for May 9, 2001. I was told it was a routine surgery and Marcus would be able to come home the same day. Little did I suspect that this surgery would turn out to be life changing on so many levels. The surgery was performed in Lake Charles. Upon induction of the anesthesia, administered by the anesthesiologist, Marcus experienced an episode of hypoxemia (loss of oxygen in the blood). The anesthesiologist continued with the procedure instead of stopping it and upon administration of general anesthesia, Marcus experienced a second episode of hypoxemia and a significant decrease in blood pressure with bradycardia (slowed heartbeat). After chest compressions and cardiopulmonary resuscitation for a period of 20 minutes, Marcus was revived but left in a coma and on a ventilator. The doctor came out to inform me of Marcus’ condition after surgery. He said, “Are you familiar with the vegetative state?” I had so many questions but all he said was, “Well this is what he is going to be so deal with it.” Those words still ring clear in my head today. Due to limited medical equipment at that hospital, I was asked to meet with another doctor and a critical care doctor. I was then informed that Marcus needed to be moved to a PICU unit at Memorial Hospital and upon agreeing we arrived by ambulance at 1:30 pm that same evening. On the next day, around 7:00 pm, the surgeon who performed Marcus’s surgery came to his room with a small black case in hand. He said that due to the turn of events yesterday he was there to stitch up Marcus. Marcus had heavy bandaging on his stomach area. I was confused because I thought we were no longer under his care. He uncovered my son and removed the gauze. After removing the bandage, Marcus’ intestines came out of his body. He began pushing them back inside him. By this time, I ran to the nurse’s station to demand the new doctor come to Marcus’s room. The doctor came and told the surgeon that he had no business coming and doing what he did because Marcus was no longer his patient once we moved him to Memorial. Another procedure had to be performed to close Marcus’ belly. A different doctor and anesthesia team were called in to perform the surgery and this time it was successful. But, my child was still in a coma and on a ventilator. At the end of May, after 21 days of Marcus being in a coma and intubated, it was decided he was going to be taken off the ventilator. The doctor and I were the only two in the room with my son to see the outcome of the ventilator removal. He told me if his chest rose and fell Marcus would live but to be prepared if it did not. I remember being terrified but still looking towards my son. The noise from the machine stopped and then Marcus’s chest began moving up and down. His doctor jumped in the air so excited. All I could do is just stand there, thanking God! I thanked his doctor and I could hear him shouting loudly, he is alive, he is alive! Then, I felt my breath return to me. From there, we were accepted by Dr. Nadell, a neurosurgeon at Children’s Hospital, and his rehabilitation team in New Orleans. Upon our arrival, we were met by a large group of doctors. Marcus was placed on a feeding tube for nourishment. Dr. Nadell conducted neurological testing and examinations. When informed of the results, I was told that he has paralysis. He explained the EEG results and said that Marcus’ sense of understanding was not affected but his ability to communicate was. He said if he regained his speech, he would be difficult to understand. We discussed that his personality may be different with unpredictable behaviors, anxiety, and aggression could occur because of the damage to his brain. My heart was broken and my mind was saturated. I could not wrap my head around how all of this could happen. My beautiful son was born healthy and now will have a lifelong disability that affects every aspect of his life. Marcus’s rehabilitation time at Children’s went by and before leaving, they had arranged an overnight stay at Ronald McDonald house to see if I could care for my son without the safety net of the hospital. Upon arriving, tears began flowing for a few minutes. I pulled myself together, wiped the tears away, and promised my son I would do whatever it takes to keep him home and not institutionalize him. The beds in our room were single beds and had no railings. Afraid that Marcus would fall out of bed or the feeding tube would break, I took the mattresses from our beds and put them on the floor side by side. I gave him a bath, gave him his medications, and we went to bed. I was able to care for my son without the safety net of the hospital. Our stay at the hospital was coming to an end. It was very emotional! I cried and although I knew we couldn’t stay there forever the comfort level I had there was now going to be gone and the reality of all that we had been through hit me hard. I prayed for strength. After arriving back to Lake Charles, Marcus’ home care began which consisted of nursing staff and a physical therapist. His daily living needs were provided by his sister and I. We had very few friends to help us. Miracles do happen and his days of being tube fed were short-lived as he regained the ability to chew and swallow. With constant care and therapy, Marcus began to thrive. He attended school at Pearl Watson Elementary in Lake Charles. His teacher, Wanda Johnwell, seen the fear I had about leaving him at school the first day. We talked and she addressed my concerns and eased my fears. I knew I had to let him go and this was the first step in me letting him regain his life. Many others have had a great impact on his young life, too many to name but never forgotten. Marcus’ life in middle school was amazing. He was blessed to be in a classroom of a very hands-on teacher, Cassandra LeBlanc. She worked with him through difficult situations on a daily base to improve his knowledge and understanding. He worked very hard and overcame many challenges. Their work paid off and he became a 4.0 student. When it was time to transition to high school we had an IEP meeting to see which school Marcus would be attending. Marcus wanted to go to the same high school where all of his friends would be going. I wanted Marcus to attend the meeting to let the team know that he is very capable of advocating for what he wanted for his life. Marcus entered the meeting and said, “Good afternoon ladies and gentlemen, I am Marcus Johnson, I would like to know why I cannot go to a school where all my friends go?” He was asked, where are your friends going? He said, “All my friends I have here live in Moss Bluff, and I want to go to a school where I know people and they know me.” Some of his educators believed my son only recognized objects and not people. This day they saw otherwise. They saw a young man who not only recognized people but was able to express his opinion and advocate for himself. I was so very proud of him. Marcus loves school and the ability to function, learn and meet people. He graduated from Sam Houston High in 2017 with a Diploma. He is now learning skills to become an assistant to a coach. Marcus has touched the lives of many and in return, they have affected him with greatness to be what I call, My Wonderman!
Journey
Marcus and his sister playing a few days before his before surgery
Elaine and Marcus
~ Bambi Polotzola
The Louisiana Statewide Independent Living Council (SILC) was established by the Rehabilitation Act of 1973 to support the efforts of our citizens with disabilities to live independently in the community of their choice. SILC works to maximize the leadership, empowerment, independence and productivity of individuals with disabilities, facilitating integration and full inclusion into the mainstream of American society. SILC is composed of twenty-two members appointed by the governor. It is required that the majority of SILC members are individuals with disabilities and provide statewide representation. Louisiana Statewide Independent Living Council Members The work of SILC includes: Jointly develop a State Plan for Independent Living (SPIL) Monitor, review, and evaluate implementation of the state plan Develop strong, positive partnerships with other councils that address the needs of specific disability populations and issues under other federal law Develop and submit periodic reports to the federal government as required by law, regulations, and/or rule Prepare a resource plan for SILC in conjunction with the designated state entity
Governor John Bel Edwards shares a message in this video highlighting the importance of individuals with disabilities to have the opportunity to enjoy life in their communities and in the comfort of their own homes. He highlights the incredible work of and resources available at Independent Living Centers across Louisiana as well as the leadership of the Statewide Independent Living Council. We are blessed in Louisiana to have such incredible advocates and a Governor who is so sincere in his support of people with disabilities.
Statewide INDEPENDENT Living Council Advocacy. Accessibility. Independence.
@SLIC provides information and referral, advocacy, peer counseling, and other independent living services. We work to develop community options for persons with significant disabilities throughout our twenty-one parish region. @SLIC assists these individuals in achieving and maintaining self-sufficient, productive lives.
Paving the Way: Parent Tips for Supporting Success in High School and Beyond The road to adulthood for youth with disabilities is filled with opportunity, and parents play a key role. This web page has multiple branches where parents can explore topics such as: communication and teamwork, study habits and course selection, celebration and support, and preparing for the future. Youth in Action! – Serving on Decision-Making Boards This 2018 tip sheet from NCWD/Youth speaks directly to youth with disabilities. It describes what decision-making boards are and gives examples, discusses why youth should serve on such boards, and offers suggestions for how to get started. YES! Youth Employment Solutions Center Check out the list of resources at the link above, all intended to support competitive, integrated employment outcomes for transition-aged youth and young adults with intellectual and developmental disabilities. Benefits for Children with Disabilities The Social Security Administration has a 2019 version of its pamphlet explaining the benefits availability to eligible children with disabilities (under the age of 18): SSI, SSDI, health insurance, Medicaid and Medicare, employment support programs, and more, including how to apply. There's also a 2018 version of the pamphlet in Spanish. How Data Empowers Parents When parents have the right information to make decisions, students excel. But often the only information parents receive about their child’s education is through report cards and the occasional parent teacher conference. Better information empowers parents to provide better support, make better decisions, and be better advocates.
Resources for FAMILIES & 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.
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!
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 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.
The Louisiana Department of Education is committed to helping families find the right school or early childhood center for their children, and providing them with helpful information about Louisiana’s schools. The Louisiana School Finder is an interactive, online tool that provides families with: school performance scores and early childhood performance ratings to show how well schools and centers are preparing students for the next grade-level; basic information about schools and centers such as their address, website, hours of operation, and principal or director’s name; and listings of course offerings, clubs, enrichment and extracurricular activities. To find out information about schools and early childhood centers in your area, visit www.louisianaschools.com, and type in a school or center’s name, or your zip code.
700 Hickory Avenue Harahan, LA 70123 504-888-9111 800-766-7736 504-353-2350 fax info@fhfofgno.org fhfofgno.org
