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Exceptional Times
January 2017
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Stop Riding on
Coat Tails!
By: Mary Jacob
Looking for the perfect New Year's Resolution? How about we all stop riding on the coat tails of advocates of generations past? There is no doubt we are all very busy with families, work and the day to day things we must do in order to survive. However, when you have a family member with a disability - unfortunately, it does require you to get educated and actively advocate. You can't depend on others to do it for you. Nobody knows your story better than you. I can't imagine how services would be significantly different for all of our children with disabilities if people like Kay Marcel, Mike Vasko, Frances Hilburn, Drew Fluke, Doris Machinski, Tara Messenger, Mary Pirosko, Pat Cranford, Gary McKee and Ida and Jerry Mialaret and others didn't blaze the trail for us. These folks worked nonstop to get Act 378 passed in 1989. Less than thirty short years ago some parents had no choice but to put their child in an institution. So the time has come for you to step up and carry this torch.
Below is a recent Facebook post from my friend and colleague Bambi Polotzola, Executive Director of Louisiana Governor's Office of Disability Affairs and mom of a young man with autism. With her permission I'm reprinting it because her message is spot on and what I believe is a huge problem today. Here is Bambi's very bold statement:
This post is addressed to my disability advocate friends. Actually, they are my family and just as I'm very vocal with my biological family, I must be vocal with my disability family.
Some of us probably all of us at some point, follow along and even repeat what our friends, families, and coworkers say. The fact is most of those people, as much as they may love us and our children, have no clue as to the complexity of policies that affect our children and the services they need. It is NOT ok for us as parents and self-advocates to just "go along to get along." We have to be involved and understand the issues so that we can advocate and improve the lives of people with disabilities.
When was the last time you attended a school board meeting or called your school board member? When was the last time you went to the Capitol when disability advocates attended on an issue? When was the last time you visited, called, or talked to your legislators? When was the last time you attended a social event with a disability group? When was the last time you attended a training in person or online about anything that will give you more knowledge as to better help yourself and/or your child?
Perhaps we've been riding on the coat tails of advocates of past generations for too long. We MUST take responsibility and quit with the excuses.
I usually try to be very supportive and understanding. Today I'm not understanding! Each and every one of us has an obligation to our children and to others with disabilities to make this world better for them. If anyone of us is not, we are failing our children and each other. My child is depending on you and your child is depending on me. We can't throw our children under the bus due to cowardliness to stand up and speak out even when the majority takes the opposing stance.
Do what's right ... and be bold about it.
Act 378 is the legislation that created Home and Community Based Services (waivers) and the Families Helping Families Centers. Thanks to advocates like Donna Yancey, Debbie Braud, Diane Hazelwood, Sharon Hager, Alicia Banks, Susan Benoit Riehn, Lydia Thibodaux, Sharyn Scheyd and others for working endless hours starting the statewide family resource network to support parents of children with disabilities. These parents raised the bar for all of us. They inspired us to want more for your children and taught us anything was possible if you believed in your own power to make change.
Start your New Years Resolution by registering for some trainings offered by Families Helping Families and other disability organizations (See below under upcoming trainings). Start your New Years Resolution by registering and attending the legislative roundtable in your region (See below under Lagniappe/LaCAN. Start your New Years Resolution by calling your legislators and letting them know about your family and how disability services need continued funding.
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| | Mary Jacob, Rose Gilbert, Carol Calix & Brenda Singelmann |
I'm going to start my New Year's Resolution by thanking the three mothers who impacted me the most in my early years of advocacy. These three women I looked up to and still admire to this day. These moms were my first mentors and demonstrated daily the difference between a job and passion. Thank you, Rose Gilbert for teaching me how to allow my children to grow into independent adults. I watched and listened to you tell me how important it was for Nick to have a meaningful life which would never happen if he wasn't given the opportunity to explore his neighborhood, work, vacation and live his life as independently as possible knowing that he could have been hurt mentally or physically. You knew it was the right thing to do. Thank you, Carol Calix for teaching me the true meaning of "presuming competence". Your stories about Alicia often amazed me. When some would doubt her ability to understand you never doubted this ability and clearly knew she didn't need a voice to have a voice. Last but not least, thank you Brenda Singelmann for teaching me how we should never take anything for granted. I quote you often when I tell people, "Everyone is only one accident away from being disabled". People that don't think disability topics are important to them rethink it when I tell them about Roberta and just how quickly a family can be thrust into the disability arena. Thanks for everything you three did to assist in that trail blazing and a very special thanks to Nicholas Gilbert, Alicia Calix and Roberta Singelmann for being the true warriors behind all that passion. To quote Bambi, "Do what's right....and be bold about it." Take that torch and run. Now. Be the CHAMPION your child and others with disabilities need! Happy 2017 to you and your family!
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Articles
Check out these other great articles we've provided for you this month:
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Upcoming Trainings
- FHF January Workshops -
Transferring & Positioning Safely, Friday, January 27, 2017, 10:00 am - 12:00 pm, East Bank Regional Library, 4747 W. Napoleon Ave., Metairie, LA 70001: Many individuals require caregiver assistance with lifting, moving and handling (e.g. being turned during the night, being lifted in and out of bed, transferring from a seat to a wheelchair or from a wheelchair to a toilet, and so on). The sheer volume of these activities can lead to fatigue, muscle strain and injury. This training will demonstrate safe handling and movement, maintaining correct body mechanics and posture, identify and prevent environmental risk factors, discuss manual and powered lifts and slings, and the use of positioning equipment. Click here for more information!
To register, please call: 504-888-9111 or toll free 1-800-766-7736.
Extended School Year (ESY) Services- Wednesday, January 12, 2017, 10:30 am - 11:30 am: Extended school year (ESY) services are re-quired special education and related services provided beyond the limits of the school term, in accordance with the child's individualized education program (IEP), and at no cost to the parents. These services are necessary in order to provide a free appropriate public education (FAPE). This webinar will be an opportunity to learn more about the federal regulations that specifically address ESY services. Additionally, it will provide parents with the in-formation on requesting these services and how IEP teams determine the need for ESY services.
"Legal Status and Capacity - What's the difference and why does it matter?" - Thursday, January 12, 2017, 8:00 pm - 9:00 pm: Did you know that the second an individual turns 18 he/she is considered a "competent major?" As a competent major, no one other than the individual has the legal authority to make decisions on his/her behalf regardless of whether that person has capacity or not. Join us for this webinar to learn more about legal status, the impact it can have on an individual with a significant disability, and how to change someone's legal status when appropriate.
EEOC Basic Overview of the Laws - Wednesday, January 18, 2017, 11:00 am - 12:00 pm: This presentation will focus on each of the laws enforced by the EEOC including example of discriminatory practices and how an employee files a Charge of Discrimination. It will also include what an employer should do after being Notified of a Charge.
Understanding the Important Difference between "Accommodations" & "Modifications" - Wednesday, January 18, 2017, 1:00 pm - 2:00 pm: Meeting after meeting, parents and teachers use the words "accommodation" and "modification" almost interchangeable when discussing IEPs and student needs. If understood and used correctly, these words can greatly impact the success of a child's educational program. Get answers to these questions and more:
- How can accommodations and modifications help my child in the general education classroom?
- How are accommodations and modifications included in IEP and which accommodations are provided for state testing?
Seizure Recognition and First Aid for Families - Thursday, January 19, 2017, 12:00 pm - 1:00 pm: Basic information for parents or caregivers whose child has recently been diagnosed with epilepsy. Includes information and tips to help manage your child's epilepsy for optimal care. You will learn about resources for additional help and support.
IDEA: What You Need to Know - Thursday, January 19, 2017, 1:30 pm - 2:30 pm: Learn your rights, responsibilities and role as a parent of a child in special education. Discover how a student is evaluated and found eligible to receive special education services. Understand the procedural safeguards parents have in the special education process.
"Expanded SSI application window for foster kids" - Tuesday, January 24, 2017, 10:30 am - 11:30 am: The transition into adulthood is one of the most critical turns in life's journey. For foster children living with a disability, this period can be even more challenging. Did you know that since 2010, SSA rules have allowed foster children to apply for SSI? Join us to learn how SSA is expanding this application window and explanation of benefit eligibility criteria for children and share helpful tips and best practices for filing SSI applications.
Be Your Own Self-Advocate - Tuesday, January 24, 2017, 7:00 pm - 8:00 pm: Everyone should be able to stand up for themselves, especially youth with disabilities. Having this skill provides a feeling safety and independence. Being a self-advocate means having the knowledge needed to succeed and are given the chance to participate in decisions that are being made about your life. We hope that through this webinar we can encourage and inform youth and families members how to become a successful self-advocate.
Understanding 504 - Wednesday, January 25, 2017, 11:00 am - 12:00 pm: Learn what a 504 plan is, how to request it, and the difference between a 504 plan and an IEP (Individualized Education Program). This training will explain how to become eligible for a 504 plan, how this plan can be used, what is included, parent and student rights, and the options available if a disagreement arises. A virtual tour and discussion of the newly revised Individual Accommodation Plan will be addressed.
Individualized Education Program (IEP): A Blueprint for Student Success (for
Children and Youth Ages 3-21) - Thursday, January 26, 2017, 12:00 pm - 1:00 pm: Each public school child who receives special education and related services must have an IEP designed to meet his/her unique needs. The foundation of this program is the IEP which is developed by a team of individuals which includes the parent (s). This training provides an overview of the major components of the IEP as well as a step by step walkthrough of the IEP form.
FHF e-Learning Mini Modules
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! The following e-Learning Mini Modules are currently available:
- What do you do when the school calls to pick up your child?
- What transportation services are available to my child with a disability?
- How can I prepare for my child's Individualized Education Plan (IEP) meeting?
- Individuals with Disabilities Education Act (IDEA) Basics
- What is Least Restricted Environment (LRE)?
We hope these are useful to you and happy to be able to add additional ways for families to learn relevant information they need in order to get their child the most appropriate education they deserve. Click here to go to our website and learn more about the e-Learning Modules!
Trainings & Webinars provided by others
Jefferson Parish Human Services Authority is offering Active Parenting Classes in Spanish - Thursday, January 5, 12 and 19, 2017, 10:00 am - 1:30 pm, 4747 West Napoleon Ave., Metairie, LA 70001: Como Redirigr el Mal Comportamiento y mas. Espacio es limitado. Para mas informacion contacte a Latasha Marshall at 504-831-3811 or lmarshall@jphsa.org Click here for more information
EnvisionIT: Enhancing Transition through Technology - Wednesday, January 25, 2017, 4:00 pm - 5:00 pm EDT: According to the Ohio and National Longitudinal Studies, 70% of high school seniors with disabilities say they want to go to college. Yet, a year later, only 30% of these students had taken college classes and only 20% were still enrolled in college. Why is this so? According to Dr. Izzo, these students were not prepared for their transition to college and/or careers. In this webinar Dr. Izzo will present EnvisionIT: Enhancing Transition Through Technology, a 21st century online curriculum aligned with standards and designed for grades 8-12. The curriculum teaches English and language arts, information technology literacy, college & career readiness, and financial literacy. EnvisionIT was designed with accessibility and universal design for learning in mind and is highly customized to meet the needs of students, teachers, and other stakeholders.
Deaf Education Alliance Summit 2017: Better Together - Students Improve When We Improve, January 27-28, 2017, LSU Health Sciences Center, 411 South Prieur, New Orleans, LA 70112 - Keynote Friday, "Early Childhood Bilingualism with Deaf & Hard of Hearing Students & Impact on Student Outcomes" - Rachel Coleman; Keynote Saturday, "When Deaf Kids Thrive" - Paula Rodriquez. For more informationand to register go to www.deaffocus.org Click here for flyer!
Fetal Alcohol Spectrum Disorders (FASD) Symposium - Friday, February 3, 2017, 8:00 am - 4:45 pm, LSU Human Development Center, 411 S. Prieur St., New Orleans, LA 70112: Nationally Recognized Experts will be featured. Topics Include: Diagnosis & Treatment, Early Childhood & Special Education, Juvenile & Adult Criminal Justice, Strategies & Interventions, Advocacy. For special accommodations and requests contact Alisha Williams at awilliams@advocacyla.org Click here to register for the event!
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Hot Topics
The White House Report: The Continuing Need to Rethink Discipline - The White House released a new capstone report with updates about projects launched and local progress made in response to the Administration's Rethink Discipline efforts. Rethink Discipline was launched as part of President Barack Obama's My Brothers' Keeper initiative, and aims to support all students and promote a welcome and safe climate in schools. View the full report here. You may view the full press article, along with relevant resources, on the White House Press Office website.
Dear Colleague Letter Addressing Racial Discrimination - The Office of Civil Rights (OCR) has released a new Dear Colleague Letter to remind states, school districts, and public schools of their legal obligation to prevent discrimination on the basis of race in special education. The letter outlines how to avoid racial discrimination in the referral for disability evaluation, the evaluation process itself, and the provision of special education. It also provides 10 illustrative examples that provide further guidance on those processes.
Final Regulations on Disproportionality Released - On December 12th, the U.S. Department of Education published final regulations under Part B of IDEA aimed at promoting equity by targeting widespread disparities in the treatment of students of color with disabilities. The regulations address a number of issues related to significant disproportionality in the identification, placement, and discipline of students with disabilities on race or ethnicity.
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Links You Want To Check Out
If you've ever done an internet search on a topic, you know first-hand how difficult it is to sort through the thousands of links that come up with the search. Below is a list of some of our favorite links for the month that others have shared with us. We hope you find them as informative as we did.
At a Glance: 8 Key Executive Functions - Executive Functions let people plan, organize and complete tasks. Here's a closer look at this important set of skills-and how executive functioning issues can affect your child's everyday life.
When Your Child with Autism has Trouble Making Friends - Babble is partnering with PACER Center to help parents better understand and navigate the needs of children with mental health and behavior issues. This month we're talking about how to help your young child be emotionally and socially healthy.
The Beach Center is another great program which is housed at the University of Kansas and run by two wonderful people, Ann and Rud Turnbull, in addition to being researchers and educators they are the parents of a young man with multiple disabilities. One of their current projects is a Community of Practice, or board like this one where parents, professionals and researchers can get together to link research and practice and share experiences.
Fashion's Newest Frontier: The Disabled and the Displaced - For people who are bound to a wheelchair, finding accommodating clothes may be difficult. But a dedicated wife to a man with Parkinson's has developed a new way to solve this issue. The brilliant idea comes from magnets instead of using buttons.
Parents Guide to OCD - How to recognize obsessive-compulsive disorder in kids, and what you need to know to get effective treatment. All About Young Children - In 8 different languages - Check out the All About Young Children website, where you can find out about what skills help children learn, how they learn language, how they learn about numbers, and how they become skillful at moving their bodies. Share the site with families who are learning about childhood development.
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Extensive Lending Library
Families Helping Families has an extensive lending library. Books, dvds and more are here, free of charge, for families and professionals to check out. You are welcome to come and browse our library during office hours, Monday through Friday, 9 am to 4 pm. If you cannot make it into our office, you can see a complete list of our inventory and any item can be mailed to you. Just click here to see a complete list of items in our lending library.
Before you buy it - check to see if we have it!
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Changing Lives. Every Day.
Success Story of the Month
Every day we hear wonderful things about the work we do for individuals in the community. One of the things that keep us going daily are the success stories we hear.
Jessica Nobles Teaches a Cooking Course - Jessica is a very bright and lovely 23-year-old woman with autism. We've known each other since we were in high school together. She has constantly shown me her strengths and abilities, is very well spoken, and a good self-advocate. |
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Lagniappe
This section will give you information on events FHF will be attending, waiver waiting list info, other community events you might be interested in attending and anything else that doesn't fit in one of the above sections.
The Office for Citizens with Developmental Disabilities provides supports and services through a variety of locations throughout the state to support the dignity, quality of life and security in the everyday lives of people with developemental disabilities and their families, acting as the Single Point of Entry.
Waiver Registry Dates - As of December 16, 2017, 2016 the following dates have been reached on the waiver registry, a.k.a. the waiting list.
New Opportunities Waiver (NOW) - 8/18/2004
Children's Choice Waiver - 6/20/2006
Supports Waiver - 12/31/2014
Not sure where you are on the registry? Call 1.800.364.7828
LaCAN (Louisiana Council's Advocacy Network). LaCAN will now keep you informed about opportunities to advocate for systems change in home and community-based services, employment, and education. Click here to join!
Save the Date for the upcoming 2017 Legislative Roundtable events:
Region 1 & 10 - Thursday, January 26, 2017 - 9 to 11:30 am, First Baptist Church, 5290 Canal Blvd., New Orleans, LA 70124. For additional information, call Daniell at 504.491.6604 or 504.943.0343 or email dmigliore@lacanadvocates.org.
Region 2 - Wednesday, February 8, 2017 - 9 am to 12 noon, Location TBA. For additional information, call Ashley at 225.715.5740 or 225.216.7474 or email amcreynolds@lacanadvocates.org.
Region 3 - Thursday, February 9, 2017 - 9:30 am - 12 noon, Terrebonne Parish Library - North, 4130 W. Park Ave., Gray, LA 70359. For additional information, call Julie at 985.447.4461 or 985.438.1179 or email jsmith@lacanadvocates.org.
Region 4 - Wednesday, February 1, 2017 - 9:30 am - 12 noon, Lafayette Public Library, 301 W. Congress St., Lafayette, LA 70501. For additional information, call Mauricia at 337.984.3458 or email mwalters@fhfacadiana.org.
Region 5 - Tuesday, February 7, 2017 - 9:00 - 11:30 am, SOWELA Community College Arts & Humanities Building, 3820 Sen J Bennett Johnston Ave, Lake Charles, LA 70615 For additional information, call Mylinda at 337.436.2570 or email melliott@lacanadvocates.org.
Region 6 - Tuesday, February 21, 2017 - 9:30 am - 12 noon Kees Park Community Center, 2450 Highway 28 East, Pineville, LA 71360. For additional information, call Kristen or Melissa at 318.641.7373 or email kreed@lacanadvocates.org or mbrossette@lacanadvocates.org.
Region 7 - Tuesday, January 31, 2017 - 9:30 am to 12 noon, Bossier Instructional Center, 2719 Airline Drive, Bossier City, LA 71111. For additional information call Duane at 318.688.4830 or 318.226.4541 or email debarb@lacanadvocates.org.
Region 8 - Friday, February 24, 2017 - 9:30 am to 12 noon. Delta Community College, 7500 Millhaven Road, Room 108, Monroe, LA 71203. For additional information, call Stacey at 318.361.0487 or email sguidry@fhfnela.org.
Region 9 - Thursday, February 2, 2017 - 10 am - 12:30 pm, Madisonville Library, 1123 Main Street, Madisonville, LA 70447. For additional information, call Katie or Karen at 985.507.8540 or 985.264.1186 or email kcorkern@lacanadvocates.org or kartus@lacanadvocates.org.
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FHF Team
Families Helping Families of Jefferson is your one stop shop for disability information. We are the only family resource center for individuals with all disabilities, all ages and their families in Jefferson Parish. We offer services across the lifespan.
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Families Helping Families of Jefferson is proud to celebrate our 25th year providing support to families throughout the State of Louisiana!
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Louisiana Parent Training and Information Center (LaPTIC) is a program of Families Helping Families of Jefferson and a grant from the US Department of Education; Office of Special Education (OSEP) as Louisiana's official and only statewide federally funded Parent Training and Information Center.
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The Mission of Families Helping Families is to educate and
connect children and adults with disabilities and their families to resources, services & supports to attend school, work and thrive
in their communities
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FHF of Jefferson
201 Evans Road, Bldg. 1, Suite 100
Harahan, LA 70123
504.888.9111
800.766.7736 (toll free)
info@fhfjefferson.org
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