Free Webinars and Training P.16
TIMES
MAGAZINE
Exceptional
What's Going ON?
From the Executive Director, Mary Jacob DUAL DIAGNOSIS: WHEN IN CRISIS P.06
Occupational Therapy
Strategies for Successful Toilet Training P.8
ISSUE 24
February 2020
From the Editor, Bebe Bode yes, they love! P.04
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.
Cover: Seth Bode and Isabel Aksimsek
BOARD OF DIRECTORS Gregory Brenan, CPA, CCIFP, CGMA Jo Ann D. LoRusso, Ph.D. Denise Barrera, MPH, MSW Debra Dixon M.Ed.+30 Ashley Bourg Michelle Archambault, CPA/PFS
Exceptional Times
04 COVER - Yes, they love! 06 Dual Diagnosis: When in Crisis 07 Louisiana Department of Education Parent Survey 08 Strategies for Successful Toilet Training 10 Everything You Ever Wanted to Know About the Flexible Family Fund 11 Jefferson Parish Community Resource Fair 12 Marriage Equality for All, Unless You're Like Me 14 What is PBIS? 16 What's Going On? 18 Health Care Education and Advocacy 23 NORD Special Needs Mardi Gras Ball 24 He Said, She Said! Their Love Story 35 2020 Legislative Advocacy Agenda (Revised) and LaCAN Member Meetings 36 Resources for Families & Educators 38 February Awareness 40 Coping Strategies for Parents of Individuals with Autism Spectrum Disorder 41 Autism Life Lessons - Save the Date 42 Louisiana School Finder
OUR TEAM executive director MARY JACOB mjacob@fhfofgno.org - Ext. 207 community outreach specialist SHARON BLACKMON sblackmon@fhfofgno.org - Ext. 208 director of public relations BEBE BODE bbode@fhfofgno.org - Ext. 226 information & training specialist NICOLE DESROCHE ndesroche@fhfofgno.org - Ext.218 administrative assistant LIZ DUMAS ldumas@fhfofgno.org - Ext. 202 intake specialist MINERVA FLORES mflores@fhfofgno.org - Ext. 217 director of peer to peer support LAURA S. NATA lsnata@fhfofgno.org - Ext. 209 cshs parent liaison THUY NGUYEN thuy.nguyen@la.gov 504.896.1340 phone | 504.896.1360 fax cshs youth liaison STEVEN NGUYEN steven.nguyen@la.gov 504.896.1340 phone | 504.896.1360 fax director of training JESSICA RODRIGUE jrodrigue@fhfofgno.org - Ext. 204 director of administrative services DENISE SWEATMAN dsweatman@fhfofgno.org - Ext. 203
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
CONTENTS
700 Hickory Avenue Harahan, LA 70123 504.888.9111 800.766.7736 504.353.2350 fax info@fhfofgno.org fhfofgno.org
Yes, they love!
by Bebe Bode
As the parent of a young man with autism I want my son to be able to live his life to the fullest. I want him to be able to have all the experiences that HE wants to have. He is 25 years old now and has expressed his feelings since he was twenty years old about having a girlfriend, getting his first kiss, getting married, and even having children. He even had gender and names picked out for them. He said, “I want a boy named Sebastian and a girl named Angel.” Just because he has autism, doesn’t mean he does not have the desires, wants, needs, or dreams that we all have. Of course, as his mom, I know that he needs to understand what it means to be a husband and a father before he were to take on these responsibilities. Back when Seth began to talk about this, I brought it up to his pediatrician. To my chagrin, he said, “Well, people with autism really don’t know how to love so they shouldn’t get married.” I immediately felt my head become very warm, my eyes started to burn, I was clenching my teeth, and was getting ready to let loose some profanity-filled rage on his ears that his nurses probably would have been likely to call the po-po on me. But something else came over me… I can only say that God intervened. I told him that this was quite a misconception and the reason some people still question whether a person with autism can feel love is due to the misunderstanding that autistic people can’t feel emotions. I assured him they can. I said the following, “People with autism feel emotions but for some it is hard for them to read faces and they may struggle to make eye contact; they may experience the world in a different way so there are times what we perceive as noninterest is just that, a perception; they may be non-verbal and cannot express or understand in a traditional way what or how they are feeling but just because they cannot express it does not mean that they don't feel love.” I continued … “My son was able to express that he wanted these things. This is not something I brought up to him.” I shared with him all the ways my son shows me he loves me, his father, brother, and family. How much he loved to be snuggled, hugged, and kissed throughout his entire life. How his love was one that made me believe in unconditional love. I told him about a news story I saw about a couple who have autism that married. They were very much in love. Their marriage may not look like a typical marriage in some ways but it worked for them. They both were gainfully employed, had routines that they followed and allowed for each other to have, and knew each other’s quirks and obsessions. That it didn’t go without frustration. The best part is they understood why the other experienced those feelings or emotions because it was a part of their autism. They were lucky because they didn’t have to rely on government services so they could marry and live together without the fear of losing life-sustaining supports and services. I added, “Thinking that just because someone has autism means that they shouldn’t get married… I could give you a laundry list of people I know who don’t have a disability who should have never married or had kids. What’s the difference? They didn’t have a disability so they were afforded that right.” I shared with him all of the concerns that I had about my son being in a relationship. Not that I thought it was impossible but because I probably thought out every single good and not so good scenario of how it could turn out and how I wanted to protect him. Our conversation lasted a good 45 minutes or should I say my conversation. He listened intently to everything I said without interruption. I very much appreciated that. When I was done, he told me that he appreciated me sharing with him all of my concerns and they were very well thought out. He said, “Your son is very lucky to have a mother like you. You have honestly changed my mind and gave me so much more to think about.” He said, “I was thinking of marriage in a traditional sense because I am Catholic, but marriage can look different and no two marriages are the same.” He thanked me. I was so taken back by his response. I knew it was sincere! I knew he meant it! You could tell by his body language, his facial expression, and a sincerity in his voice. I thanked him for listening. I walked out of there very thankful to God for giving me the strength to not go off in the direction my brain initially took me in. If I had, I never would have been heard. Everyone should be quick to listen, slow to speak and slow to become angry ~ James 1:19 The struggle for individuals with disabilities dating and marrying is real. Most cannot marry or live together for the risk of losing vital life- sustaining services or waivers, social security income, Medicaid and or Medicare. There are many obstacles they face. If they fall in love with someone in another state and want to marry, they will lose their services in the state where they live in order to move and live with their spouse. So many relationships are long distance. Most cannot marry because of their services and have a commitment ceremony. Dating is hard if you cannot drive yourself so you’re basically left to be transported to date around other peoples schedules and not your own. Also, they almost always have an audience when they date. Can you imagine if this were you? How would it make you feel? February is the month of LOVE! We have included two stories ( p.12, p.24 ) in this month’s Exceptional Times on what love is like for two different couples facing the obstacles of disability and marriage in hope that it brings light to the issue of love and equality.
Dual Diagnosis: When in Crisis
by Mary Jacob
Jefferson Parish offers some of the best crisis intervention services in the state of Louisiana and yet, we know things can still quickly turn tragic, as evidenced by the recent death of a youth with a dual diagnosis in Jefferson Parish. This incident sparked outcry from many in the community to do more to protect our loved ones when they are in crisis situation. In 2017 Act 210 was passed by Louisiana Legislators that required the development and implementation curriculum for de-escalation, bias policing recognition, sudden in-custody death and crisis intervention training, which shall include training for law enforcement interactions with persons with mental illness and persons with developmental disabilities. In Jefferson Parish this additional training includes classroom instruction as well as field instruction and interaction with individuals receiving services and treatment for mental health and/or developmental disabilities. I’m fortunate enough to be a member of the Jefferson Parish Human Services Authority – Developmental Disabilities Regional Advisory Council (meetings are open to the public), which provided me with the opportunity to address this tragedy and how we move forward as a community to instill trust and build relationship so our family members are safe at home and in the community. Jefferson Parish Sherriff’s Officers addressed our concerns as community members at our recent meeting and has pledged to continuously find ways to improve relationships between their officers and community members. Most crisis intervention calls are coming from homes – not community businesses and these were some suggestions made to help foster a positive relationship with your local law enforcement agency: Call your local police station and request for the Beat Officer to stop by your house as a non-emergency call. Explain you want your loved one with a disability to meet the officer that protects their home. Let this officer know your concerns. Call your local police station and request to attend roll call and talk to officers about your loved one and your concerns and how you’d like them to interact with the person with a disability. The most important thing you can do is create opportunities to have positive interactions with officers so in the event of a crisis, they already have a relationship with your loved one. Finally, I’ve been in conversations with JPHSA and JPSO to host a community-wide event that will give families the opportunity to learn more about developing these relationships and dealing with crisis situations. As a community, we must do better at protecting our loved ones and finding solutions for the lack of services available to individuals with dual diagnosis.
A crisis can impact an entire family – not just the person in crisis at the moment. Families often live in isolation and experience a range of emotions including fear, anger and guilt. Many view their life as hopeless, while others choose to focus on the good times. Regardless of how families choose to seek support and treatment, the one thing that is evident is the lack of qualified professionals that can offer the needed support for individuals with dual diagnosis.
for Successful Toilet Training
continued p.27
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.
Reprinted from Feb. 2019 Exceptional Times
Strategies
by Sharon Blackmon
Taking care of a family is rewarding. And all-consuming. And hard. And expensive. Sometimes we run out of money before we run out of month, at least at my house. And when you add on the additional expenses associated with a disability, it can be overwhelming. While I am most thankful for healthcare coverage, insurance certainly doesn’t pay for everything! Did you know that there is a cash subsidy program called the Flexible Family Fund? If your child has a qualifying disability, they may receive a monthly stipend to help offset some of the expense that comes from having special healthcare needs. The stipend can be used to purchase personal hygiene supplies (diapers, wipes, lotion, soap, deodorant, etc.), nutritional supplements or specialty diet items, child care, educational supplies and expenses, adaptive equipment, and even community activities. It can also be used to assist with medical expenses and equipment not covered by Medicaid or private insurance. The Flexible Family Fund provides $258 per month to families of children with severe disabilities. Qualifying exceptionalities include autism, severe or profound mental or intellectual disability, deaf-blindness, and multiple disabilities. Children with some other exceptionalities will be considered on an individual basis to determine if they meet criteria; those disabilities include developmental delay under age nine, traumatic brain injury, emotional disturbance, orthopedic impairment, and other health impairment. To apply, contact your parish’s Human Services Authority or District. They will provide an application, which has to be submitted with medical or school documentation of the child’s diagnosis. There is currently a waiting list to be approved for the Flexible Family Fund; slots come open when children experience a change of disability status or age out of the program at 18. Once approved, a deposit of $258 will be made to the FFF debit card each month until the child’s 18th birthday or such time as status changes deem them no longer eligible for the fund.
Everything You Ever Wanted to Know About the Flexible Family Fund
For people with disabilities, these programs and supports are non-negotiable, providing literally life-sustaining support. Individuals with disabilities—especially those relying on Medical Assistance and Home and Community Based Services—do not have the freedom or right to choose marriage. When a person is forced to decide between marriage and survival, survival must take precedence. Love has not yet won for us.
Not long ago, I remember the excitement that spread across America when the Supreme Court decided that “love ruled,” giving the right of marriage to gay couples. News articles, Facebook posts, and email subjects all celebrated the news of “marriage equality.” It was a long-awaited day—finally a day to celebrate the civil right of marriage. Since then, a majority of Americans assume that marriage equality is a right for everyone throughout the country; however, this right does not include all of us.
Marriage Equality for All, Unless You’re Like Me
Josie Badger poses with her husband, Mike, their dog and their wedding party
by Josie Badger
National RAISE Center@SPAN, 1.13.2020 | Marriage Equality for All Unless You're Like Me, Newark, NJ, Josie Badger © 2020 RAISE Center.
For people with disabilities, if you are one of the lucky ones, you have been made aware of the potential risk of reduced or loss of benefits that can accompany marriage. However, there are countless couples with disabilities that return from their honeymoon just to find out that they have lost life-sustaining supports or services. America has a history of taking extensive measures to ensure that people are not abusing the system. Supports such as Social Security, Medicare/Medicaid, and home and community-based waivers are based on medical and personal (readily available no cost care) necessity, and as such individuals must meet a list of requirements in order to qualify. An individual’s eligibility for any of these services is often founded on household income and assets, regardless of the needs of the individual or family. In other words, the income and assets of the family, including a spouse, is used to determine whether an individual can receive services. For couples where one or both individuals require supports, such as social security income, there are significant disincentives to marriage. Once a couple is married, their joint income and assets (including savings and retirement) is considered in determining eligibility for supports and premiums. In certain situations, the couple could individually receive a certain income and still qualify for services such as medical assistance, but jointly (legally married), their income could make them ineligible for the service. In other situations, the government will reduce the cash benefits for the couple because it is believed that they need less assistance since they will be sharing a home, food, etc., and therefore may not need as much support. When I first met my husband, I knew that legal marriage was not going to be an option. I am completely reliant on medical assistance and waivers to allow me to lead home and work lives. Even though his job provided great insurance, private insurance will not cover what I need to survive. We decided to be “married by the church”, which is similar to a commitment ceremony. Although we made the best of the situation and really enjoyed our wedding, this was the only choice we had. We are already seeing some of the barriers that not having a legal marriage can have. We’ve always dreamed of having a family, and didn’t realize the issues we would run into without a marriage certificate. Buying a house, applying for loans, filing taxes, and many of the other benefits that come with being married, are not possible for us. Not to mention no one really knows what to call us or how to address our Christmas cards. Having different last names doesn’t really bother us (I prefer my name anyhow); what bothers us is that we will never be recognized as “married” in the eyes of the government. So much has been done to make sure that people have equal rights and we as a society have truly come a long way, but when it comes down to it, we as individuals with disabilities just don’t have the same rights. We’ve been told “it shouldn’t matter as long as you love each other. Why do you need to be legally married?” But that’s the same ableist mentality that society takes on most disability access issues. Why should our disabilities prevent us from doing or aspiring towards the things that most other people take for granted?
continued p.30
The PBIS Triangle—The green area represents Tier 1 that supports all students.
WHAT IS PBIS?
What is Tier I Support? Tier 1 systems, data, and practices impact everyone across all settings. They establish the foundation for delivering regular, proactive support and preventing unwanted behaviors. Tier 1 emphasizes prosocial skills and expectations by teaching and acknowledging appropriate student behavior. Teams, data, consistent policies, professional development, and evaluation are essential components for these practices to work effectively. The core principles guiding Tier 1 PBIS include the understanding that we can and should: Effectively teach appropriate behavior to all children Intervene early before unwanted behaviors escalate Use research-based, scientifically validated interventions whenever possible Monitor student progress Use data to make decisions Foundational Systems Tier 1 systems serve as the foundation upon which all other tiers are built. With school-wide systems in place, schools can identify which students require additional support more efficiently. These Tier 1 foundational systems are: Leadership Team The Tier 1 teams establishes the systems and practices for Tier 1 support. This team is responsible for monitoring school-wide data, ensuring students receive equitable access to these supports, and evaluating the program’s overall effectiveness. Regular Meeting Routine, Schedule, and Structure The Tier 1 team meets at least monthly. Team members should have availability to attend at least 80% of all scheduled meetings to provide consistency around action planning and tracking progress. Meetings should include an agenda, minutes, defined roles, and a current action plan. Commitment Statement for Establishing Positive School-wide Social Culture A school's PBIS Leadership Team must identify implementing PBIS school-wide as a critical priority. If it is not identified as one of the school's top three needs, it is unlikely anyone will allocate the time and effort needed to accomplish implementation. Although not a requirement, It is beneficial when a majority of school personnel also agree PBIS implementation is critical to addressing issues related to the social, emotional and behavioral growth of all students. On-Going Data-Based Monitoring, Evaluation, and Dissemination Tier 1 teams review and use discipline and academic outcome data at least monthly to guide decisions. Reviewing fidelity data measure how closely the school implements the critical components of PBIS at Tier 1. Annually, teams evaluate the overall effectiveness of Tier 1 supports and share their findings with stakeholders. School personnel should see school-wide data regularly and have opportunity to provide input on Tier 1 foundations. Procedures for Selecting, Training and Coaching New Personnel The key to PBIS implementation is staff consistency. All staff members need to be aware of goals, process, and measures. Tier 1 implementation may require professional development to orient all school personnel – particularly around at least four core practices: Teaching school-wide expectations Acknowledging appropriate behavior Correcting errors Requesting assistance Key Practices Before schools start implementing Tier 2 and Tier 3 practices, Tier 1 practices must be in place. These include: School-wide Positive Expectations and Behaviors are Defined and Taught Rather than establishing specifically what not to do, schools define and teach the behaviors and expectations they want to see. Schools should identify 3-5 positively stated, easy to remember expectations. These should align with creating the kind of positive school climate the school wants to create. Anyone should be able to walk into the school at any time and ask 10 random students to name the school-wide expectations. At least 80% of the time those students should be able to say what they are and give examples of what they look like in action. For students to know the expectations, they must be taught. The Tier 1 team should decide how students will learn expected academic and social behaviors across various school settings. Procedures for Establishing Classroom Expectations and Routines Consistent with School-Wide Expectations Students spend the majority of their day within classroom settings. It’s critical the expectations in the classroom align with the broader school-wide systems. This consistency supports better behavioral outcomes for all students. Teachers explain what the school-wide expectations look like in their classrooms during specific classroom-level routines. Continuum of Procedures for Encouraging Expected Behavior A school’s Tier 1 team determines how to acknowledge students positively for doing appropriate behaviors. Schools adopt a token system in addition to offering specific praise when students do what’s expected. No matter the system, it should be: Linked to school-wide expectations Used across settings and within classrooms Used by 90% or more of all school personnel Available to all students within the school Continuum of Procedures for Discouraging Problem Behavior All discipline policies should include definitions for behaviors interfering with academic and social success. They offer clear policies and procedures for addressing office-managed versus classroom-managed problems. Defining both the behaviors and the procedures promote consistent application of Tier 1 across all students and school personnel. Procedures for Encouraging School-Family Partnerships Teams should solicit stakeholders, including families, for input on Tier 1 foundations. Opportunities to provide ongoing feedback and direction should happen at least once a year, if not more regularly. This input ensures Tier 1 is culturally responsive and reflects the values of the local community. The Tier 1 Team In addition to monitoring Tier 1 systems, the Tier 1 team meets regularly to refine school-wide practices and evaluate their effectiveness. The team reviews discipline data, curriculum-based measures, state tests, and other data sources related to improving school-wide outcomes. Individuals with the following positions are often included on Tier 1 teams: Someone to coordinate the team School administrator Family representation Classroom teachers Student representation (more likely at the high school level) In addition to these suggested roles, the team should have the following skillsets represented: Behavioral expertise Coaching expertise Knowledge of student academic and behavior patterns Knowledge about how the school operates across grade levels and programs What is Tier 2 Support? Tier 2 practices and systems provide targeted support for students who are not successful with Tier 1 supports alone. The focus is on supporting students who are at risk for developing more serious problem behavior before they start. Essentially, the support at this level is more focused than Tier 1 and less intensive than Tier 3. Tier 2 supports often involve group interventions with ten or more students participating. Specific Tier 2 interventions include practices such as social skills groups, self-management, and academic supports. Targeted interventions like these, implemented by typical school personnel, are likely to demonstrate positive effects for up to 67% of referred students. Continuously available Accessible within 72 hours of referral Very low effort by teachers Aligned with school-wide expectations. Implemented by all staff/faculty in a school. Flexible and based on assessment. Function-based Allocated adequate resources Student chooses to participate. Continuously monitored Foundational Systems Tier 2 practices stem from a strong foundation of Tier 1 support. With school-wide systems in place, schools are able to identify which students need additional support. In addition to Tier 1 systems, the foundational systems involved in Tier 2 support are: Intervention Team with Coordinator This team establishes systems and practices for students requiring Tier 2 support. Team members ensure students receive timely access to interventions, oversee implementation, and regularly use data to monitor student progress and evaluate the program’s overall outcomes. Behavioral Expertise Team members with behavior support expertise help Tier 2 teams consider the function of a student’s problem behaviors prior to choosing an intervention. They keep teams focused on aligning interventions with what will work best for students. Fidelity and Outcome Data Collection Regardless of the intervention implemented, it is important to collect and monitor data about student performance. Teams use these data to determine whether to continue, modify, fade, or move on from a student’s intervention. Assessing how closely Tier 2 supports are implemented as intended (fidelity of implementation) ensures student’s get the maximum benefit from the intervention as possible. Two ways to assess fidelity include self-assessment and direct observation. However you collect Tier 2 data, it should be quick and easy. Screening Process to Identify Students Schools need a clearly defined, methodical process for considering which students may need additional support. Multiple strategies can be used to identify students for Tier 2 supports. Examples include: Office discipline referrals Screening instrument scores Teacher nominations Parent and support service recommendations Formative assessments. It is not necessary to exhaust all possible identification methods. No single method is likely to identify all students who need Tier 2 supports. It is recommended schools select and use multiple techniques. An effective identification process should generate information for students experiencing externalizing (able to be observed) and/or internalizing (directed inward) behaviors. Access to Training and Technical Assistance At Tier 2, school personnel need effective professional learning which is research-based, consistent, ongoing, convenient, relevant, and differentiated. Access to training, practice, feedback, and coaching are also important. Key Practices Tier 2 practices start with a strong Tier 1 foundation. In addition to these Tier 1 practices, key Tier 2 practices include one or more of the following: Increased Instruction and Practice with Self-Regulation and Social Skills Regardless of the intervention, Tier 2 supports include additional instruction for key social, emotional, and/or behavioral skills. An important outcome of Tier 2 interventions is when students can regulate on their own, when, where and under what conditions particular skills are needed and can successfully engage in those skills. Once data indicate a positive response to the intervention, students learn how to monitor and manage their own behavior. Increased Adult Supervision Tier 2 supports include intensified, active supervision in a positive and proactive manner. For example, adults may be asked to move, scan, and interact more frequently with some students, according to their needs. This can be accomplished with simple rearrangements across school environments. Increased Opportunity for Positive Reinforcement Tier 2 supports target expected behavior by providing positive reinforcement for often. For example, students who participate in a Tier 2 Check-in Check-out intervention engage in feedback sessions with their classroom teacher and other adults in the school as many as 5-7 times per day. Many students view this positive adult attention as reinforcing and as a result may be more likely to continue engaging in expected behaviors. Increased Pre-Corrections At this level, another key practice to prevent problem behaviors is to anticipate when a student is likely to act out and do something to get ahead of it. For example, specifically reminding students of classroom expectations. These pre-corrections might be gestures or verbal statements delivered to an entire class, a small group of students, or with an individual student. Pre-corrections set students up for success by reminding them, prior to any problem, what to do. Increased Focus on Possible Function of Problem Behavior It is important to consider why students engage in certain behaviors in order align Tier 2 interventions best suited to their needs. When they know what motivates students to behave a certain way, teachers can help them find alternatives to their unwanted behavior. Increased access to academic supports Some students receiving Tier 2 behavior support may need additional academic support, too. Often challenging behavior serves the purpose of allowing students to avoid or even escape academic tasks that are beyond their skill level. Academic intervention along with behavioral supports may be needed to improve student success. The Tier 2 Team In addition to monitoring Tier 2 systems, the Tier 2 team meets regularly to design and refine Tier 2 interventions in the building. The team is responsible for reviewing students referred for additional supports and providing training to families, school personnel, and students regarding interventions. Individuals in the following positions are often included on the Tier 2 Team: Someone to coordinate each Tier 2 intervention School Administrator Behavior Specialist ClassroomTeacher· In addition to these suggested roles, committee members also may serve a coaching role to support implementation of Tier 2 practices among staff. Coaching practices include: Understanding and reviewing data Encouraging, teaching, prompting, providing practice, and modeling for school personnel Communicating with stakeholders Distributing information and gathering input Organizing and promoting professional learning What is Tier 3 Support? PBIS’ framework doesn’t just work with school-wide and targeted supports. It’s also an effective way to address sometimes dangerous, often highly disruptive behaviors creating barriers to learning and excluding students from social settings. At most schools, there are 1-5% of students for whom Tier 1 and Tier 2 supports have not connected. At Tier 3, these students receive more intensive, individualized support to improve their behavioral and academic outcomes. Tier 3 strategies work for students with developmental disabilities, autism, emotional and behavioral disorders, and students with no diagnostic label at all. Foundational Systems Tier 3 practices stem from strong foundations in Tier 1 and Tier 2 supports. With both tiers in place, schools are free to organize individualized teams to support students with more intense needs. The foundational systems involved in Tier 3 supports are: Multi-disciplinary Team Tier 3 team membership includes an administrator, a coach/behavior representative, others with basic knowledge of problem solving. Team members should also include personnel who actively provide Tier 3 support in the school. This gives them input on decisions about interventions they provide to students they serve. Including school personnel from different departments ensures an array of perspectives. Behavior Support Expertise A school’s Tier 3 team must include someone who has experience providing formal behavior support. They need to have applied behavior expertise and experience developing multi-agency support. Formal Fidelity and Outcome Data Collection Documenting student outcomes lets teams monitor how the resources allocated and the practices adopted affect student’s outcomes. These data are essential to: Supporting data-based decision making and problem solving Identifying needed adjustments to Tier 3 practices Maximizing resources Ensuring all students are supported fully and equitably Evaluating the system’s overall effectiveness Determining student eligibility for additional resources Evaluating individual education programs· Assessing how closely Tier 3 supports are implemented as intended (fidelity of implementation) ensures student outcomes can be attributed to the interventions provided. Key Practices Tier 3 practices start with strong Tier 1 and Tier 2 foundations. In addition to these practices, the key practices involved in Tier 3 supports are: Function-based assessments Functional behavior assessment (FBA) is the formal process for ensuring a student’s plan centers on why a student behaves the way they do. FBA allows teams to identify which interventions are most likely to be useful for an individual student. Plans resulting from a formal FBA process will include strategies for: Preventing unwanted behavior Teaching appropriate behavior Positively reinforcing appropriate behavior Reducing rewards for unwanted behavior Ensuring student safety Wraparound supports Wraparound supports involve working with students and the adults invested in their success to identify how a student’s natural support systems, strengths, and needs can work together to improve their outcomes. The Wraparound plan typically includes both formal, research-based services and informal supports provided by friends, family, and other people drawn from the student's social networks. For more information, check out the National Wraparound Initiative’s introduction to key concepts. Cultural and Contextual Fit With every practice, the student's and the school's culture and context must be considered. Each of these element influences and adds value to a school’s Tier 3 practices: Local environments such as neighborhoods and cities Personal characteristics such as race, ethnicity, and nationality Learning histories such as family, social routines, customs, and experiences Language such as dialect and vocabulary Tier 3 Teams There are two types of teams associated with Tier 3 supports: the Tier 3 leadership team and individual student support teams. Tier 3 Leadership Team Tier 3 teams won’t look the same in every school. Whether you have one team looking at Tier 3 specifically, or one team monitoring Tier 2 and 3 systems together, this leadership team meets regularly to be sure: Students who need additional support have access to those systems Students who receive Tier 3 supports are successful Tier 3 leadership teams are led by someone with applied behavior expertise, administrative authority, multi-agency support experience, knowledge of students, and knowledge about how the school operates across grade levels and programs. Tier 3 Student Support Team In addition to a team committed to monitoring Tier 3 systems, there must be a problem-solving team for each student receiving Tier 3 supports. These teams meet regularly to design and refine strategies specific to one student. The team’s goal is always to transition a student to fewer intensive supports. Tier 3 student support teams typically include people from the student’s school, home, and community. Students and their families input and approval on who is on the team. The school’s administrator must have enough involvement to allocate resources as needed for a student’s plan. Assessments The Tiered Fidelity Inventory (TFI) assess how closely school personnel apply the core features of PBIS. The TFI includes three separate surveys – one for assessing each tier – schools can use separately or in combination with one another. Schools at every stage of implementation may use the TFI to assess any tier.
TIER 2 Tier 2 practices and systems support students who are at risk for developing more serious problem behaviors before those behaviors start. These supports help students develop the skills they need to benefit from core programs at the school.
TIER 3 At Tier 3, students receive more intensive, individualized support to improve their behavioral and academic outcomes. At this level, schools rely on formal assessments to determine a student’s need.
TIER 1 Tier 1 practices and systems establish a foundation of regular, proactive support while preventing unwanted behaviors. Schools provide these universal supports to all students, school-wide.
Positive Behavioral Interventions and Supports (PBIS) is an evidence-based three-tiered framework to improve and integrate all of the data, systems, and practices affecting student outcomes every day. PBIS creates schools where all students succeed.
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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: FHF NOLA Date: Tuesday, February 4, 2020 Time: 10:00 am – 11:00 am Audience: Parents, Caregivers, and Professionals of School-Aged Children/Students. Section 504, Title II and Student’s with Disabilities - Section 504 is a federal law designed to protect the rights of individuals with disabilities in programs and activities that receive Federal financial assistance from the U.S. Department of Education (ED). Section 504 provides: "No otherwise qualified individual with a disability in the United States . . . shall, solely by reason of her or his disability, be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving Federal financial assistance." Learn more about this civil rights law. Co-Sponsor: FHF of Acadiana Date: Tuesday, February 4, 2020 Time: 11:30 am – 12:30 pm Audience: Parents, Caregivers, and Professionals of School-Aged Children/Students. 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 are involved in making meaningful inclusion successful, and its underpinnings in federal law. Co-Sponsor: Northshore FHF Date: Thursday, February 6, 2020 Time: 12:00 pm – 1:00 pm 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. Date: Monday, February 10, 2020 Time: 11:00 am – 12:00 pm Audience: Parents, Caregivers, and Professionals of School-Aged Children/Students. Mapping Dreams (Transition to Adulthood) - The transition your child will make from being a child to becoming an adult member of the community is an important journey, and one that requires a plan. It's important to begin thinking about your child’s transition to adult life as early as possible. Your child will need to make many significant decisions during this journey to adult life. In this presentation, we will explore what families and youth can do to help plan for the student’s transition from high school to adult employment, postsecondary education or training, and independent living. Co-Sponsor: FHF at the Crossroads Date: Monday, February 10, 2020 Time: 12:30 pm – 1:30 pm 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. Date: Tuesday, February 11, 2020 Time: 9:00 pm – 10:00 pm Audience: Parents, Caregivers, and Professionals of School-Aged Children/Students. All About Test and Assessments - This webinar will talk All About Assessments and Testing. It will answer some frequently asked question regarding assessments and testing, when to have your child evaluated and interpreting those assessment results. Co-Sponsor: Bayou Land FHF Date: Wednesday, February 12, 2020 Time: 11:00 am – 12:00 pm 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: FHF of Southwest LA Date: Saturday, February 15, 2020 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: FHF NOLA Date: Monday, February 17, 2020 Time: 11:00 am – 12:00 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: Bayou Land FHF Date: Tuesday, February 18, 2020 Time: 7:00 pm – 8:00 pm Audience: Parents, Caregivers, and Professionals of School-Aged Children/Students.
“The first wealth is health” ~ Ralph Waldo Emerson, American essayist, lecturer and poet “America’s health care system is neither healthy, caring, nor a system.” ~ Walter Cronkite, American journalist and long-time anchor of CBS Evening News
HEALTH CARE EDUCATION AND ADVOCACY
Medicaid, explained: why it's worse to be sick in some states than others
Much can be said about health care in America. It is confusing, fragmented, expensive, and vital. It is the most complex health care system in the world. In this edition of RAISE The Standard, we explore issues related to health care and health care-related decision making for youth of transition age. Most of these young people have either private insurance—through a job, through parents, or purchased through the Affordable Care Marketplace—or public insurance, through Medicaid. Some have a combination of coverages. The Affordable Care Act Prior to 2014, people with disabilities had difficulty purchasing health care insurance in the individual commercial market because insurers would not provide coverage for people with pre-existing conditions, or because policies could be prohibitively expensive. The Affordable Care Act (ACA) changed that. Now, everyone has the right to buy health insurance under what is known as the “guaranteed issue” provisions of the ACA. These provisions require three things: Insurers cannot deny coverage due to disability or pre-existing conditions. No one can lose their insurance or be denied the right to renew their insurance simply because they become sick or develop a disability. Insurance companies cannot set premiums based on a person’s health conditions, so people with disabilities cannot be charged more simply because of their disability. Learn more on What ACA Coverage Means for People with Disabilities. Medicaid Explained Medicaid is a federally-funded, state-managed health insurance system that provides a broad range of medical and long-term care services to meet the needs of people with disabilities, people with low income, children, and other vulnerable groups. The services it covers include primary and preventative care, medical treatment for illnesses and chronic conditions, and nursing home care. Medicaid provides health insurance coverage to more people than any other single program in the United States. Roughly 74 million people are covered by Medicaid. One in five Americans is covered by Medicaid. Roughly half of those covered under Medicaid are children. Roughly 10 million Americans qualify for Medicaid based on a disability. Medicaid is more than health insurance: it pays for long-term care and community based supports, helps people with disabilities get and keep jobs, and helps fund services to eligible students in schools. Learn more on how Medicaid Works for People with Disabilities. While it is a national program, Medicaid coverage, eligibility, and services vary greatly from state to state. This 11-minute video from Vox outlines the history of Medicaid and its role in American healthcare, and describes how the variations in coverage from state to state can literally be a matter of life and death. Understanding Private Insurance Some people are covered with private insurance—common carriers include United Health Care Group, Wellpoint, Kaiser Foundation, Humana, Cigna, and Blue Cross, to name a few. These providers offer insurance coverage both through employers, and on the Affordable Care Marketplace. These plans have deductibles, copays, in and out of network doctors, and other features that many users find confusing. What do these terms mean, and how does it work? This short video from Consumer Reports breaks it all down.
PRIVACY, HEALTH CARE DECISIONS AND DISABILITY Your health care information is private. The Health Insurance Portability and Accountability Act of 1996 (HIPAA) established that medical information for anyone over the age of 18 is private, even if they are still covered by their parent’s insurance. The law does not consider whether the person has a disability or the capacity to make informed decisions. Learn more about Your Rignts Under HIPAA. Medical Information and Medical Decision-Making: HIPAA Release and POA (*) Making health care decisions can be a matter of life and death. While most young adults with disabilities (at age 18, a student is considered by the law to be an adult) are legally competent to handle their own day-to-day affairs, a person with a disability may wish to have assistance from someone they have chosen and whom they trust - a parent, a sibling, a spouse, or a close friend – in handling certain complex medical matters. Currently, all but seven states (Massachusetts, Minnesota, Missouri, Nebraska, New Hampshire, Rhode Island, and Vermont) have a surrogate consent law that allows family members or friends to make medical decisions in an emergency or serious health situation when a person with special needs cannot make medical decisions for himself and if no relevant power of attorney or similar is in effect. Most of these laws presume that the family would follow the individual's wishes. Most advocates and attorneys recommend that all people – but especially individuals with disabilities and their parents/guardians - engage in more intentional planning. Here are three important planning tools and documents that are worth having in place: 1) A HIPAA release allows health care providers to release and share medical information with a specific individual of the person’s choice—and even an app. Without a signed HIPAA form, doctors may refuse to discuss the adult child’s condition with a parent or caregiver. A signed HIPAA authorization doesn’t need to be notarized, and those who sign these forms can prevent some information (for example, sex, drugs, or mental health) from being disclosed. Sample HIPAA release form. 2) Health Care Proxy is a document no one likes to think about, but it is important. A Health Care Proxy, also called a health care agent or Power of Attorney for Health Care, is the person you choose to make health care decisions for you if you’re too sick or injured to make them for yourself. Your proxy can talk with your doctors, consult your medical records, and make decisions about tests, procedures, and other treatment if you are not able to do so. Everyone age 18 or older should complete a health care proxy form — even if they’re perfectly healthy. Learn more about Health Care Proxies. 3) A Medical Power of Attorney (POA) allows a young adult to appoint someone to make medical decisions on their behalf. Different states have different laws, different forms, and different rules on whether these forms need to be notarized or signed by witnesses. In some states, HIPAA authorization is a part of the standard medical power of attorney form. Some individuals may want to take an additional step by appointing a Durable Power of Attorney, which allows another person to take care of other business, such as filing taxes, paying bills, or accessing bank accounts, on their behalf. Sample POA form. Consent and Signature Q: What constitutes “consent” for young adults with intellectual and developmental disabilities?” A: The United Nations Convention on the Rights of Persons with Disabilities is the first international treaty to recognize that all people with intellectual and cognitive disabilities have a human right to legal capacity. Article 12 calls for supported decision-making to replace substituted decision-making such as power of attorney or guardianship. What is the difference? Substituted decision-making transfers responsibility to make decisions to a third party. Supported decision-making allows people with intellectual and cognitive disabilities to name trusted supporters to assist them with making decisions and to assist with communication. Nowhere is this support more important than in making informed decisions about one’s own health and end-of-life care. Supported health care decision-making for people with intellectual and cognitive disabilities. This in-depth article from the University of Kansas digs deep into the practical and legal issues on health care decision making. Healthcare Treatment Decision-Making Guidelines for Adults with Developmental Disabilities. Q: What constitutes a “signature’? A: According to UpCounsel.com, signatures are the most common method of indicating that you have read over and agreed to the terms, even if a person’s signature is so stylized and unique that’s illegible – even digital. Regardless of the form, the importance of the signature entails proof that an offer has been accepted and considered. But what form is acceptable? All one would need is a mark that represents who that person is. It can be in the following forms: Squiggles Picture “X” As long as the signature represents who that person is and their informed intent, any of the marks are considered valid and legally binding. Signatures are usually recorded in pen, but this is not always the case. Legally Binding Signature: Everything You Need to Know. (*) Please note, this article and these links do not constitute legal advice. Those interested in HIPAA release or POA should get advice from local advocates or legal professionals. In order to develop, consent to, and sign these documents, the individual must have the capacity to make the decision to share information and/or appoint a surrogate. What is Medicaid Buy-In? Health insurance coverage can have an important relationship to employment for people with disabilities. People with disabilities on Medicaid may be concerned that they will lose their Medicaid coverage if they enter or return to the workforce. Furthermore, commercial or employer-based health insurance might not provide ample coverage for services and supports, such as personal assistance services, that enable people with disabilities to work and live independently. The Medicaid Buy-In program allows persons with disabilities to purchase Medicaid coverage that helps enable them to work. The Medicaid Buy-In program for working people with disabilities is an option authorized under the federal Ticket to Work and Work Incentives Improvement Act. The Medicaid Buy-In program offers health care coverage to people with disabilities who are working, and whose earnings and resources might otherwise make them ineligible for Medicaid. The Medicaid Buy-In program is an optional Medicaid program that states may choose to provide. States have latitude in the design of their Medicaid Buy-In program, and not all states offer the program. Eligibility determination, which varies by state, considers factors such as employment, disability, income, and resources. (In Louisiana Medicaid Buy-In changed and is now called a Medicaid Purhase Plan.) PERSPECTIVES USING APPS TO MANAGE HEALTH CARE? Your Privacy May Be at Risk While it might be tempting to turn to “tech” to communicate and share information, users need to be cautious. In 2017, there were nearly half a million health and wellness apps on the market. Consumer Reports warns that patient privacy may be at risk. Researchers found that companies can gain access to personal information that is used to target ads, or worse. Some health apps provide enough information to make users completely identifiable, allowing an insurance company or another entity to buy packages of data that reveal your medical condition. “The information that consumers reveal to health apps can be especially personal and can also find their way into users’ health scores, which are used in insurance underwriting, and in other ways a consumer would not expect.” - Dena Mendelsohn, senior policy counsel for Consumer Reports
A CLOSER LOOK
TICKET TO WORK JUST TURNED 20! Over the course of 20 years, the Ticket program has served over one million people with significant mental and physical disabilities through a modern, nationwide employment services and support system comprised of more than 700 providers drawn from both the public and private sectors. Every year, thousands of people with disabilities find jobs and leave Social Security disability benefits behind to support themselves through employment. In many cases, they will earn more than they would have from benefit payments.
The National Resources for Access, Independence, Self-determination and Employment (RAISE) Technical Assistance Center is a project of the SPAN Parent Advocacy Network and is funded by the U.S. Department of Education Rehabilitation Services Administration. The views expressed herein do not necessarily represent the positions or policies of the Department of Education. No official endorsement by the U.S. Department of Education of any product, commodity, service or enterprise mentioned on this website is intended or should be inferred. This product is public domain. Authorization to reproduce it in whole or in part is granted. While permission to reprint material from this website is not necessary, the citation should be: National RAISE Center@SPAN, (January2020)
TOOLS THAT WORK
Louisiana Student Standards Have you ever wondered what your child is supposed to be learning in school? Academic Standards define the knowledge and skills that students are expected to learn in a subject in each grade level. Louisiana’s Department of Education has a comprehensive list of all academic standards on their website. All students, even students receiving special education are supposed to be working on these standards.
homeworkla.org/
Hello to all out there reading this. My name is Jerri Elizabeth Hodge, and this is the story of how I met, dated and married Don James Rodrigue. I’m 38 years old from Laurel, MS and was born with a rare brittle bone disease (Osteogenesis Imperfecta) that caused somewhere around 300ish broken bones in my life so far. One of those was my neck that while thankfully didn’t leave me paralyzed, it did cause my neck to curve and eventually collapse on itself. Because of this I have a trach, ventilator and am mostly bedridden. My husband, Don James Rodrigue lives in Dulac, LA and was born with Duchenne Muscular Dystrophy as well as a second type only seen in Asian population of which he is definitely not. His disease has caused his muscles to deteriorate over time, which has left him on a trach and ventilator as well. Despite all of this we still managed to meet, and here we are 25 years later with our story.
He Said, She Said Their Love Story!
1. How did you two meet? Don: I was at a hospital appointment in New Orleans and Jer's nurse decided we should meet. Being the totally awesome social butterfly I am, I don't think I said a single word. Jerri: I can’t say any one part of our history has even a remotely short or “normal” answer but here goes. We met in Children’s Hospital in New Orleans 25 yrs ago. I was 13 yrs old and he was 11 and we both just happened to have an appointment there that day. Both of our appointments had been delayed almost 3 hours, and my nurse at the time thought it would be a great idea to literally drag me (I was recovering from a broken back at the time and being carried around in a little redwagon) over to “that boy you keep eyeing.” I wanted to kill her at the time, but thought well why not chat and kill time. That very quickly went wrong as I realized this boy is extremely shy and looked like a deer in the headlights after asking his name. “Don” was the whole entire conversation I got out of him that day, but my mom and his grandmother hit it off right away and ended up exchanging addresses with each other. Not email, good old fashioned snail mail and we began writing each other. 2. When did you start dating? Don: After we met our family exchanged contacts. Wrote each other a little bit before talking on the phone. After her dad hung up on me a few times because he thought I was a telemarketer, she asked me out. Jerri: It took a good year from that day for us to start dating. At first we just wrote each other, not as a couple, but just as friends at the start. At the time Don wanted to be a professional poet, so he used to write me beautiful poetry to give feedback on. I loved his writing skill and through that we started talking more seriously, but he never would ask me out. We finally exchanged phone numbers, and he worked up the nerve to call me. I’m honestly not sure how we ever went past this point because my dad thought he was a foreign telemarketer because of the Cajun accent and hung up on him at least 3 or 4 times before my mom realized it was him and ran the phone to me. He was absolutely convinced my dad hated him for a good year or more, but after getting over the trauma we called each other for about the last month before I finally ask him out. 3. Were there any barriers to dating that you encountered? Don: The distance is a big thing, but over the years we used things like Skype and Netflix for date night. Wrestlemania in New Orleans was a big deal for us. We used my Twitch stream to raise money for tickets and because of my world records in WWE gaming all the wrestlers knew us and we got to meet them. We really wanted to go more backstage but our families didn't get to stick around. Was a huge bummer because we really wanted to meet The Undertaker. Jerri: There’s quite a few barriers I have to say. Being able to physically see each other has always been the biggest barrier for us. Since neither of us can drive ourselves, and can’t go anywhere without medical aide we only got to see each other 3 times a year at the start when our parents/grandparents could drive one of us to the other’s house for a weekend visit. These past few years have been no visits at all, due to his grandparents aging and making long driving trips hard on them and my mom undergoing the health toll surviving breast cancer takes on her. We’re hopeful for visits in the future, but we both know we’re probably looking at one weekend a year at best now. Privacy has to be the other huge issue. When you live with your parents/grandparents as well as medical assistants in and out of the room, finding “alone time” is almost impossible. I don’t mean that in a snooping way, it’s just hard not to overhear one another in some fashion when you’re sardined in a house with the family. We give it our best shot though! 4. How did you keep in touch? Don: Different things across the internet has helped a lot. Jerri: Well like I said we started with writing and then calling, and while we still talk on the phone every night we’ve grown with the times too. Don does daily Twitch live stream shows (twitch.tv/hykiri) and I’m his co hostess on his shows, and he does the same for me when I live stream (twitch.tv/vaelushyn) so we basically work with each other daily. We’re both also avid gamers so we do most of our communication through PlayStation Network chat rooms. We also Skype each other several times a week. While it’s never the same as seeing each other in person, it’s to me at least like we’re together more than most couples who live together. 5. When did you get married? Were there barriers to marriage? Don: Marriage has always been a tricky thing for us. I have a thing where I try doing things that make me "feel more normal" so getting married is something I wanted more than her. Once again we used my stream to raise money for it, at the time I had some big issues going on with my aides so it was a big mess. Jerri: When we got married depends on which of us you ask. The reason being one is in person and one online. For me it was and always will be 3/13/2005. We used to play an online game called Final Fantasy XI and about a year after the game’s release they added wedding ceremonies into it, and boy did they want it to be realistic. It took me a solid year to book us a wedding date, to the point I knew the wedding planner on a first name basis from bidding on wedding dates and losing. The reason we won that date was because it’s my birthday and the planner loved the idea of it being on a special day. We sent out online invites, had online wedding rehearsals the whole nine yards. On the day of we had bought and mailed each other wedding rings to exchange during our ceremony. The GMs of the game itself even extended the ongoing cherry blossom festival until our wedding ended so we could get pictures surrounded by cherry blossoms. Our families were gathered up in each house and we even set up the video camera to record it. I truly loved that day, and that will always be our true wedding day in my heart. For Don it’s 3/5/17. He always dreamed about an in person wedding ceremony. I remember him asking when we were “going to do the real thing” the day after our online wedding and me wanting to kill him after working for a whole year to make the online one happen. We had always said we would get married on WWE as we’re both huge wrestling fans, so when at the time Elite Wrestling, a local wrestling company in Dulac offered to do the ceremony we went for it. Back in the days of dial up and Yahoo Messenger we used to write for an efed, which is basically where you create a wrestler and write their stories to post for e-tournaments. So we ordered all the clothes, makeup etc. needed to dress as the characters we created and came out as them for our wedding. It was a hilarious train wreck of a wedding. The sound system went out before the wedding even started, my mom was in charge of recording for us, thought she accidentally turned off my iPad set to record and recorded everyone’s feet through the entire ceremony and our pastor forgot to give me my ring after our vows. We got great pictures though, had fun and it always makes for a great story! 6. Was your ceremony a wedding (with a marriage certificate), or was it a commitment ceremony? Don: Commitment ceremony but we got to dress as our wrestling characters. It was at a wrestling show so some of the wrestlers were a part of it. It was totally awesome. Jerri: No marriage certificate in our case. In our states if we were to legally marry, we would be deemed a “working couple” and lose all the government assistance we absolutely need to live even though neither of us are capable of working. While it’s not fair at all, how many can say they’ve been together through all the ups and downs for 25 yrs? 7. Do you live apart? How often do you get to see each other? Both: We live apart still. It’s going on 2 years since we last saw each other. 8. How do your parents/grandparents feel about your relationship? Don: Our family gives us support, but Jer's family takes it more serious and mine sees it more as "something cute". Jerri: We really hit it lucky there. My parents think of him as a son and his grandparents think of me as another granddaughter and I feel I adopted a set of awesome grandparents myself! 9. Is there anything else you would like to say to adults in your situation about love/dating/marriage? Don: It's not an easy road to travel. Even after 20+ years it’s very difficult. Just make sure you know what you’re getting into. Jerri: I won’t lie, it’s going to be far more difficult to find that special someone when you’re disabled. Many in the world only see the physical hardships it would put on them and run the other way, but don’t give up because of it. They say there’s someone for everyone out there, and I think that’s true. I would also say don’t go crazy hunting, because the right one will find you when it’s time. Mine found me in a hospital waiting room, so just be yourself and shine bright wherever you go because you never know where Mr. or Ms. Right is waiting to find you.
Toileting Strategies p.9
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.
The PBIS Triangle—The yellow area represents Tier 2 that supports some students. Tier 1 supports are still used with students engaged in Tier 2 supports.
continued from p.15
The PBIS Triangle—The red area represents Tier 3 that supports a few students. Tiers 1 and 2 supports are still used with students engaged in Tier 3 supports.
Resource: OSEP Technical Assistance Center on Positive Behavioral Interventions and Supports (2019). Positive Behavioral Interventions & Supports. Retrieved from www.pbis.org.
2020 Legislative Advocacy Agenda (Revised) and LaCAN Member Meetings
The Louisiana Developmental Disabilities Council revised its 2020 Legislative Advocacy Agenda. See the fact sheets below for more information on each of the five items on the Council's 2020 Legislative Advocacy Agenda: Fund and Implement TEFRA Increase Funding for the Families Helping Families Regional Resource Centers Fully Fund State Personal Assistance Services (SPAS) Increase Home and Community-Based Provider and Skilled Nursing Rates Require Cameras in Special Education Classrooms Upon Request What Changed in the 2020 Advocacy Agenda? Funding for the implementation of TEFRA was added. Last year, LaCAN advocacy was successful with getting Legislators to require the Louisiana Department of Health (LDH) to implement TEFRA by the following year. As the timeline for implementation approached, LDH indicated they would need $9.1 million to offer TEFRA to approximately 800 to 1,000 of the 3,800 children estimated to be eligible. Stakeholders are engaged with LDH to provide feedback on how TEFRA will be implemented. While there is some concern over having a wait list for TEFRA and it being offered through a lottery process, having the system start will offer information useful for future advocating to expand implementation across all eligible children. The Council strongly considered but, in the end, did not add a requirement that increases Home and Community-Based Provider Rates for direct support services and skilled nursing be tied to wages paid to direct support staff and nurses, respectively. There were many reasons for not requiring some direct link to wages of workers, such as, provider rates were only recently brought up to 2008 levels, so the rates just made it to standstill level for 12 years and other employment laws could cause complications with linking wages to the rates. 2020 Advocacy Agenda to be Presented at LaCAN Meetings The Council's 2020 Legislative Advocacy Agenda will be shared across the state at LaCAN Regional Member Meetings. Individuals with disabilities, family members and advocates are encouraged to attend member meeting(s) in their area to learn more about the advocacy agenda and how to get involved in the Council's other advocacy opportunities like legislative visits, yellow shirt days and public testimony.. Take advantage of this incredible FREE opportunity to receive valuable information about advocacy and connect with your regional legislators! If you have any questions or would like to RSVP, contact your regional LaCAN leader or FHF Center today!
Address Safety Issues or Unfair Treatment at Work Unfair or unsafe conditions at work can affect productivity and overall morale. If you’re being harassed at work, weren’t paid properly, or you’ve noticed unsafe conditions that haven’t been handled by your employer, there are government resources that can help. Explore a variety of workplace concerns and how you can file a complaint to the appropriate government agency.
Director Support Toolbox launches! The Louisiana Department of Education (LDOE) is committed to providing educators with the supports and resources they need to continue raising the bar for students in Louisiana. The Director Support Toolbox provides early childhood leaders with direct links to the tools and resources to accomplish this goal.
On the Job: Stories from Youth with Disabilities This booklet shares the stories of six youth with disabilities "on the job", and highlights the benefits of using natural supports in the workplace and broader community to support successful youth employment.
RESOURCES for PARENTS & EDUCATORS
This year marks the 100th anniversary of the Vocational Rehabilitation Program. President Woodrow Wilson signed the Smith-Fess Act of 1920, also known as the Industrial Rehabilitation Act and referred to as "The National Civilian Vocational Rehabilitation Act," into law June 2, 1920. The OSERS Rehabilitation Services Administration (RSA) will be celebrating 100 Years of VR throughout 2020. To that end, we have launch a dedicated webpage to house anniversary content. We encourage you to view and bookmark the VR 100 webpage, where you will currently find the kick-off podcast from OSERS Acting Assistant Secretary Mark Schultz, VR100 graphics, signature block and the hashtag #VR100Years to use as your agency and organization promote the year. New information will be added to this page throughout 2020. We look forward to celebrating this important milestone with all of our VR stakeholders!
Your school system, under IDEA, is required to fully evaluate any child who may need special education services. The evaluation should be in "all areas related to the suspected disability." (34 CFR 300.304) The school must notify you in writing before the evaluation, before providing or changing your child's special ed services, and must obtain your parental consent. In this issue of the Special Ed Advocate you will learn what the law requires for evaluations and the benefits of a comprehensive evaluation. Find out how assessments answer questions about your child and measure progress.
Fostering Self-Determination Among Children and Youth with Disabilities The subtitle of this manual is "Ideas from parents for parents." It asks parents: What steps might you take to encourage your child to begin to become more self-determining as they grow up? This guide provides a menu of ideas to draw upon as you consider how best to promote self-determination among your own children with disabilities."
Superflex… A Superhero Social Thinking Curriculum Package (two-book set) Authors: Stephanie Madrigal Michelle Garcia Winner Superflex®: A Superhero Social Thinking Curriculum provides educators, parents and therapists fun and motivating ways to teach students with social and communication difficulties (undiagnosed or diagnosed, such as Asperger’s syndrome, ADHD, high-functioning autism or similar). The three-part cognitive behavioral curriculum helps s.tudents develop further awareness of their own thinking and social behaviors and learn strategies to help them develop better self-regulation across a range of behaviors
4 Parts of a Conversation: How to Help Kids With Social Skills Issues Also available in Spanish: 4 partes de una conversación: Cómo ayudar a los niños que tienen dificultades para socializar For most people, having a conversation is relatively easy, even second nature. Not so for children and youth with social skills issues! Skills such as reading body language and knowing what to say (and when to say it) don’t come easily to them. Here’s a look at the four parts of a conversation, the skills involved, and how to help children navigate each one.
DMDD: Extreme Tantrums and Irritability Occasional tantrums and irritability are normal parts of childhood, but some children have frequent, extreme tantrums (even at an age when most kids have outgrown them) and are irritable most of the time. Could it be DMDD? This article from the Child Mind Institute describes what disruptive mood dysregulation disorder (DMDD) is, what causes the tantrums, how the disorder is diagnosed, and how it is treated.
February 2 - Rheumatoid Arthritis Awareness Day - is a disease that affects 1.5 million Americans, most of them women. And arthritis is only one symptom of the disease. On February 2, 2020, the voices of many people who have rheumatoid disease will be heard. February 3-9 - Children's Mental Health week in an effort to raise awareness and end prejudice and discrimination. Children's Mental Health Matters! Support the National FFCMH. Together, we can end the stigma and help build a healthy environment that emphasizes children's strengths. February 4 - World Cancer Day - An international awareness day led by the Union for International Cancer Control (UICC) to raise worldwide attention and inspire action for a cancer-free future. February 7 – Go Red for Women Day (American Heart Association) February 7 - Give Kids a Smile Day - The ADA Foundation's Give Kids A Smile program kicks off on the first Friday in February each year. Then, throughout the year, dentists all across the country gather in hundreds of locations to offer free dental services to children who may not otherwise have access to a dentist. February 7-14 - Congenital Heart Disease (CHD) Awareness Week - An opportunity to show appreciation to the doctors and nurses at Primary Children's Medical Center who care for our kids. IHH also does outreach and public education about CHD's at the hospital throughout the week. February 11 - World Day of the Sick - The National Association of Catholic Chaplains has developed resources to help with the planning and celebration of World Day of the Sick. The resources include suggestions and prayers that can be used by individuals as well as by dioceses, parishes, health care institutions, and other organizations. (International) February 14 - Valentine’s Day February 15 - International Childhood Cancer Day - a global collaborative campaign to raise awareness about childhood cancer, and to express support for children and adolescents with cancer, the survivors and their families. February 17 - Random Acts of Kindness Day - has grown in popularity each year. It is celebrated by individuals, groups and organizations, nationwide, to encourage acts of kindness. It is a favorite day to many, as people everywhere are enjoying doing these acts of kindness. February 19 - Coast Guard Reserves Birthday the official birthday of the United States Coast Guard Reserve. Officially set-up in the late 1930s as a “civilian reserve” operation, it was non-military in nature. February 20 - World Day of Social Justice (Recognized by the UN) - (International) - Social justice is an underlying principle for peaceful and prosperous coexistence within and among nations. February 22 - National Heart Valve Disease (U.S.) - increase recognition of the specific risks and symptoms of heart valve disease, improve detection and treatment, and ultimately save lives. February 25 - Fat Tuesday February 27 - Anosmia Awareness Day - loss of the sense of smell. February 29 - Rare Disease Day - There are over 300 million people living with one or more of over 6,000 identified rare diseases around the world. Rare diseases currently affect 3.5% - 5.9% of the worldwide population.
FEBRUARY awareness
American Heart Month Black History Month (African-American History Month) - The Library of Congress, National Archives and Records Administration, National Endowment for the Humanities, National Gallery of Art, National Park Service, Smithsonian Institution and United States Holocaust Memorial Museum join in paying tribute to the generations of African Americans who struggled with adversity to achieve full citizenship in American society. National Children’s Dental Health Month - is an observance that brings together thousands of dedicated dental professionals, healthcare providers, and educators to promote the benefits of good oral health to children, their caregivers, teachers and many others. Low Vision Awareness Month National Cancer Prevention Month Teen Dating Violence Awareness Month - Every February across the United States, teens and those who support them join together for a national effort to raise awareness to teen dating violence. Dating violence is more common than many people think. One in three teens in the U.S. will experience physical, sexual, or emotional abuse by someone they are in a relationship with before they become adults. And nearly half (43%) of college women report experiencing violent and abusive dating behaviors. By joining together every February, we can spread awareness and stop dating abuse before it starts!
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.