Free Webinars and Training P.16
TIMES
MAGAZINE
Exceptional
What's Going ON?
From the Executive Director, Mary Jacob PARTY OF SIXTEEN P.4
Occupational Therapy
What I learned from Temple Grandin P.6
ISSUE 17
July 2019
never give up dreaming P.21
COVER STORY
EXCLUSIVE
MISSION The Mission of Families Helping Families of Greater New Orleans is to educate and connect children and adults with disabilities, and their families to resources, services, and supports to attend school, work, and thrive in their communities.
OUR TEAM Mary Jacob, Executive Director mjacob@fhfofgno.org - Ext. 207 Sharon Blackmon, Community Outreach Specialist sblackmon@fhfofgno.org - Ext. 208 Bebe Bode, Director of Public Relations bbode@fhfofgno.org - Ext. 226 Nicole Desroche, Information & Training Specialist ndesroche@fhfofgno.org - Ext.218 Liz Dumas, Administrative Assistant ldumas@fhfofgno.org - Ext. 202 Minerva Flores, Intake Specialist mflores@fhfofgno.org - Ext. 217 Laura S. Nata, Director of Peer to Peer Support lsnata@fhfofgno.org - Ext. 209 Thuy Nguyen, CSHS Parent Liaison tnguyen@fhfofgno.org 504.896.1340 phone | 504.896.1360 fax Steven Nguyen, CSHS Youth Liaison snguyen@fhfofgno.org 504.896.1340 phone | 504.896.1360 fax Jessica Rodrigue, Director of Training jrodrigue@fhfofgno.org - Ext. 204 Denise Sweatman, Director of Administrative Services dsweatman@fhfofgno.org - Ext. 203 Paul LeBlanc, Property Manager
BOARD OF DIRECTORS Gregory Brenan, CPA, CCIFP, CGMA Lisa Gennusa Ledet Jo Ann D. LoRusso, Ph.D. Denise Barrera, MPH, MSW Judith Otto, LOTR, CDRS Debra Dixon M.Ed.+30 Jedidiah Jackson Ashley Bourg
OFFICE HOURS Monday: 9:00 AM - 12:00 PM, 12:30 PM - 4:00 PM Tuesday: AFTER HOURS 9:00 AM - 12:00 PM, 12:30 PM - 8:00 PM Wednesday: 9:00 AM - 12:00 PM, 12:30 PM - 4:00 PM Thursday: 9:00 AM - 12:00 PM, 12:30 PM - 4:00 PM Friday: 9:00 AM - 12:00 PM
700 Hickory Avenue Harahan, LA 70123 504.888.9111 800.766.7736 504.353.2350 fax info@fhfofgno.org fhfofgno.org
JULY 2019
Exceptional Times
04 Party of Sixteen 06 What I Learned from Temple Grandin 08 Protecting Student Privacy 09 For Parents and Caregivers MentalHealth.com 11 LaDDC News - 2019 Legislative Session 14 Understanding Supplemental Security Income, SSI, and Other Government Programs - 2019 Edition 16 What's Going On? 18 Healthy Blue Back to School Giveaway 19 7 Tips to Help Parents Make Summer Reading Fun 20 2019 Summer Reading Program 21 Cover Story: Never Give Up Dreaming 25 Finding Your Own Way: Dignity of Risk 27 Resources for Families & Educators 28 July Awareness 29 Hurricane Preparedness for People with Disabilities Takes Time, Thought 31 Success Story - Joey Joaquin 32 Operation Spark 33 Louisiana School Finder
CONTENTS
Cover Story: Liam Reynolds
From the
Mary Jacob
Party of Sixteen
Executive Director
Some of the greatest memories I have are from our family summer beach vacations. It was and still is “my happy place”. Give me the sand between my toes, hot blazing sun, comfortable beach chair and a big ole umbrella to cover my porcelain white skin and I am one happy girl. My girls loved exploring Santa Rosa Island and I enjoyed giving them space to be free. Over the years, our group grew from a family of four to a family of eight. However, this year our annual trek grew in size exponentially. We went from our normal group of eight to a bona fide party of sixteen – three generations including ten adults and six children. Our group defies the disability odds. While society in general consists of about 12% of people with disabilities – our group hits a solid 50%, spanning all three generations, and that does not include the 13 year-old that was born at 28 weeks. Sometimes vacations are about experiencing new things. One of our crew was not sure he liked the sand between his toes or anywhere else on his body. However, he made peace with the sand realizing it was just part of a beach vacation. All the kiddos loved the Gulf water crashing on their bodies. Some stood tall after conquering big waves, while others were not so fortunate and ended up butt planted after being defeated. Regardless of the end result – they all had fun. I watched first hand that all children clearly understood the universal sign for “emptying the pool” when super loud thunder was followed by a huge lightning bolt. Screaming to get out was not required. Hanging out with your grown up children is just one reward of surviving their youth, with everyone relatively still intact. Hanging out with your grown up children AND grandchildren is simply the best. Watching cousins interact as best friends is truly awesome. This year we went to a new beach – Navarre Beach. It’s a quiet little beach on the east end of the 40-mile island on the panhandle of Florida. Some residents might disagree, as some stated they felt tourists overtook their tiny quiet community. But, after vacationing in Destin, Pensacola and Orange Beach, I can say Navarre Beach is still by far the least crowded beach. Navarre Beach is assessable. So why do you care about my annual vacay? Well, over decades of vacationing on the beach, I have never seen an accessible beach until we arrived in Navarre. Yep, they rolled out the red carpet for those needing wheelchair accessibility – well, maybe not literally the red carpet, it’s more like long blue roll up mats. Santa Rosa County has installed ADA Mats near the kayak launch at Navarre Beach and close to the Navarre Beach pier. The ADA compliant portable nonslip roll-up Beach Access Mat provides an easier, smoother path for people with disabilities that require the use of walkers or wheelchairs. They are also perfect for anyone with wheeled accessories like coolers, wagons or strollers. The mats extend close to the water’s edge with multiple wings off the main mat, making the beach much more inviting and accessible for people of all ability levels. Just imagine that – an inclusive beach! But wait, if that isn’t enough – in addition to the mats, Santa Rosa County also purchased two beach wheelchairs, to be used free of charge. These wheelchairs are designed to easily traverse sand, dirt and rocks and can even get wet. Each chair features a cushion and umbrella for increased comfort. They are available free of charge on a first-come, first-served basis. To learn more about ADA accessibility at Navarre Beach, you can go to this link: https://blog.navarrelistings.com/2018/03/19/navarre-beach-gets-wheelchair-friendly/. Planning the perfect family vacation. Whether you end up at the beach or somewhere else for a summer vacation, the most important part is planning ahead of time. Think about the vacation as going into combat and first needing boot camp. Here are some great tips for planning a vacation that might not be perfect – but could still be enjoyable. Forget the “perfect” vacation. Whether you have a child or loved one with a disability, vacations are rarely perfect. Go on vacation with the mindset that you are looking for a relaxing memorable time and everything else is lagniappe. Our party of sixteen still had a few bumps, even though I had planned everything so carefully and had it all spelled out on an excel spread sheet and vacation planner. Pick up the phone and talk to a real human when possible. If you are going somewhere new, you probably have a bunch of questions popping around in your head. Instead of worrying about the unknown, relying on a website to give you current information, or waiting for an email – pick up the phone and just ask. This will alleviate a bunch of stress. Prepare for your transportation. If you are traveling by car, think about the distance, frequency of stops, things you need to keep handy in the car – things like small toys, snacks, drinks, etc. When we took our grandkids to Disney, my granddaughter refused to use anything but her potty chair. I went out, purchased one of those small toilet training seats that sit right on top of a regular size toilet, and kept it in a dollar tote bag I purchased at the Dollar Tree. We used it at rest stops, hotels, and in Disney World. If you are flying, make sure you have all of your documentations you will need, and call the airline in advance to inquire about rules. You will want to know about the security check-in process, if you need to carry liquids on plane, you will need to ask what is allowed. Will you be bringing a child seat for the airline seat? Let the airlines know in advance that you are traveling with someone with a disability. Most airlines have special procedures for individuals with disabilities. Talk about the vacation. Prepare your child for a vacation by having many conversations about where you are going and what you plan on doing. Create a vision board as far in advance as possible. Use storyboards and visual maps to show the plan. The more you can talk about plans the likeliness your child will be more prepared. Vacation Clothes. Okay, we all want to look good on vacation. Who doesn’t want to go to Disney without our matching monogrammed Disney-themed clothes? Nevertheless, if your child has sensory issues, does not like to wear certain fabrics, or just does not like the matching t-shirts – do not ruin your day by forcing them to wear something they do not want to wear. Save your money for something better. Also, bring an extra change of clothes wherever you go in the event of accidents. Plan for the worst and hope for the best. Expect roadblocks. There may be a daily meltdown. Like I said in the beginning, there is no such thing as a perfect vacation – you just want to know when you get back home, you did the best you could and everyone enjoyed it.
What I learned from Temple Grandin
When I was in college, I heard Temple Grandin speak at The Autism SuperConference when it was in New Orleans. I remember being completely awestruck by her spunky personality and unrivaled perspective into the world of Autism. At the time, I had been working as a shadow of a boy with autism at his New Orleans school and was gearing up to start LSU’s Occupational Therapy program. Hearing about her childhood, her personal and professional innovation, and her opinions on how to best help those with Autism find their strengths inspired me as I sat in my seat, more excited than ever to start my journey towards being an OT. When I heard that she would be speaking in the area again on June 3rd, I couldn’t resist attending her presentation. As I walked up to the Pontchartrain center entrance, I saw Temple wearing her signature cowgirl shirt and talking to attendees by the book line. Instead of rushing up to her, I stood back and observed various parents and professionals approach her with questions and stories about their own loved ones with Autism. With almost every person, after hearing they had a loved one with Autism over the age of 10, her follow up question was always the same; “what are they doing this summer? Do they have a job?” One of Temple’s biggest points that she makes in her talks is to expose children with autism to activities and experiences that will help them learn skills that can be used later in life for employment. Temple describes the importance of understanding a child’s interests, learning styles and practical strengths in order to guide them to learn vocational skills. Some examples she gave included enrolling a technically minded child in a coding class or teaching a child to use hand tools so they can use their strengths in math and geometry to do carpentry. She assured each parent she spoke to that there was a way for their child to contribute, we just need to help them find it. Of course, she’s the first one to tell you that children may need support in doing these activities; however, she has the opinion that children will often exceed your expectations. I left that conference excited to have this new perspective on the importance of pre-vocational training. The very next week at work, a patient’s mother told me a story about her son with Autism that solidified the importance of what I learned from Temple. This mother had worked hard on teaching my patient, who is mostly nonverbal, how to follow the picture diagrams that came with Lego sets so he and his dad could build Lego sets together. They started small, and gradually got more complex kits as his skills improved. When his mother opened their new unassembled entertainment center, she thought her son could help hand her the tools. Turns out, after showing him the various pieces the diagram referred to, he built their whole entertainment center with help only for the final touches. His practice with building Legos was practically applied to building furniture from a diagram. THIS is exactly what Temple Grandin was talking about! Pre-vocational training can work, and can provide children with invaluable skills as they move towards independence. Temple describes that she had people in her life that gave her what she calls The Loving Push (also a title of one of her books). They empowered her to never hide behind her difficulties, rather to learn how to use her strengths. Temple attributes her success as a professor, animal scientist, livestock industry consultant, and Autism spokesperson to these mentors and loved ones who encouraged her to succeed. I am a better occupational therapist from hearing Temple Grandin speak, and look forward to giving my patients their loving push when learning functional, pre-vocational skills. If you haven’t heard of Temple Grandin, her story is amazing and I highly recommend her books, as well as the HBO documentary that was made about her life.
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 following meeting will be held at JPHSA 1500 River Oaks Road, Suite 200, Harahan, LA July 30, 2019
Parents and Caretakers of individuals with developmental disabilities, individuals with developmental disabilities, and concerned citizens are invited to attend these meetings. All guest will have the opportunity to make public comments about developmental disability topics.
Regional Advisory Committee (RAC) Meetings
The following meeting will be held at JPHSA 5001 West Bank Expy., Room 118, Marrero, LA October 29, 2019
School Resource Officers, School Law Enforcement Units, and the Family Educational Rights and Privacy Act (FERPA) This guidance document consists of thirty-seven commonly asked questions about schools’ and school districts’ responsibilities under FERPA relating to disclosures of student information to school resource officers (SROs), law enforcement units and others, and seeks to explain and clarify how FERPA protects student privacy while ensuring the health and safety of students and others in the school community.
https://studentprivacy.ed.gov/about-us
Letter to Wachter Regarding Surveillance Video of Multiple Students Letter in response to an inquiry on FERPA regarding a request from a parent for a copy of a surveillance video of a hazing incident involving multiple students, and for copies of witness statements regarding the incident.
The U.S. Department of Education’s Student Privacy Policy Office (SPPO) is responsible for the administration and enforcement of federal laws relating to the privacy of students’ education records, and for the provision of technical assistance on student privacy issues for the broader education community. Below are some guidance documents and letters that are resources parents can read to provide clarity on said topic.
Protecting Student Privacy
Letter to Agora Cyber Charter School This is an SPPO investigation findings letter to Agora Cyber Charter School relating to FERPA requirements when contracting for online educational services and restrictions on the forced waiver of parental rights to access educational services.
As a parent or caregiver, you want the best for your children or other dependents. You may be concerned or have questions about certain behaviors they exhibit and how to ensure they get help. What to Look For It is important to be aware of warning signs that your child may be struggling. You can play a critical role in knowing when your child may need help. Consult with a school counselor, school nurse, mental health provider, or another health care professional if your child shows one or more of the following behaviors: Feeling very sad or withdrawn for more than two weeks Seriously trying to harm or kill himself or herself, or making plans to do so Experiencing sudden overwhelming fear for no reason, sometimes with a racing heart or fast breathing Getting in many fights or wanting to hurt others Showing severe out-of-control behavior that can hurt oneself or others Not eating, throwing up, or using laxatives to make himself or herself lose weight Having intense worries or fears that get in the way of daily activities Experiencing extreme difficulty controlling behavior, putting himself or herself in physical danger or causing problems in school Using drugs or alcohol repeatedly Having severe mood swings that cause problems in relationships Showing drastic changes in behavior or personality Because children often can't understand difficult situations on their own, you should pay particular attention if they experience: Loss of a loved one Divorce or separation of their parents Any major transition—new home, new school, etc. Traumatic life experiences, like living through a natural disaster Teasing or bullying Difficulties in school or with classmates What to Do If you are concerned your child's behaviors, it is important to get appropriate care. You should: Talk to your child's doctor, school nurse, or another health care provider and seek further information about the behaviors or symptoms that worry you Ask your child's primary care physician if your child needs further evaluation by a specialist with experience in child behavioral problems Ask if your child's specialist is experienced in treating the problems you are observing Talk to your medical provider about any medication and treatment plans How to Talk About Mental Health Do you need help starting a conversation with your child about mental health? Try leading with these questions. Make sure you actively listen to your child's response. Can you tell me more about what is happening? How you are feeling? Have you had feelings like this in the past? Sometimes you need to talk to an adult about your feelings. I'm here to listen. How can I help you feel better? Do you feel like you want to talk to someone else about your problem? I'm worried about your safety. Can you tell me if you have thoughts about harming yourself or others? When talking about mental health problems with your child you should: Communicate in a straightforward manner Speak at a level that is appropriate to a child or adolescent's age and development level (preschool children need fewer details than teenagers) Discuss the topic when your child feels safe and comfortable Watch for reactions during the discussion and slow down or back up if your child becomes confused or looks upset Listen openly and let your child tell you about his or her feelings and worries Learn More About Supporting Your Children There are many resources for parents and caregivers who want to know more about children's mental health. Learn more about: Recognizing mental health problems in children, how they are affected, and what you can do Diagnosing and treating children with mental health problems Talking to children and youth after a disaster or traumatic event Get Help for Your Child Seek immediate assistance if you think your child is in danger of harming themselves or others. You can call a crisis line or the National Suicide Prevention Line at 1-800-273-TALK (8255). If your child is in need of community mental health services you can find help in your area.
MentalHealth.gov
For Parents and Caregivers
Let's talk about it.
2019 Legislative Session: DD Advocates Achieve Many, But Not All
Individuals with developmental disabilities, their families and other advocates tirelessly advocated before and during the 2019 Legislative Session for issues and funding that will improve the quality of life of Louisiana's citizens with developmental disabilities and their families. In many ways, this session was a huge success: funding was appropriated to restore home and community-based provider rates to 2008 levels, a new program to serve "the TEFRA population" is on the horizon for 2020 (pending CMS approval) and two of the human services districts/authorities with the lowest state funding per capita received additional funds to serve their regions. While advocates celebrated these significant gains, there were issues not addressed by the legislature that disappointed many families. A push to ensure cameras were installed in special education self-contained classrooms upon request by a parent stalled after passing the House and the Senate Education committee. Additional funding for the State Personal Assistance Services program (SPAS) to serve all individuals on the program's waiting list was also left out of the budget. As we reflect on this past session, one thing is clear - LaCAN advocates in their recognizable yellow shirts have a powerful collective voice with an effective message that resonates with legislators. Advocacy truly does work! Results for Home and Community-Based Supports On April 2, 2019, the Louisiana Department of Health (LDH) announced rates for the four home and community-based waivers and support coordination for people with developmental disabilities would be restored to 2008 levels for the remainder of Fiscal Year (FY) 2019. The supplemental appropriations bill for FY19, HB392, went a step further and retroactively restored rates to January 2019. Advocates joined providers to successfully ensure legislators added this rate restoration to the main state budget bill for FY20, House Bill (HB) 105, and included rates for the Office of Aging and Adult Services Waivers, Medicaid Long-Term Personal Care Services, and EPSDT Personal Care Services. The $38.8 million in state funds appropriated for the rate restoration also included a rebase of rates for Intermediate Care Facilities for People with Developmental Disabilities. The impact of the rate restoration cannot be overstated. Louisiana is experiencing a severe shortage of Direct Support Professionals due to the low provider rates and accompanying low wages. Testimony throughout the session provided examples of individuals' inability to find and keep staff and providers' inability to continue to provide quality services. The Community Provider Association, Supported Living Network, and Arc of Louisiana did an excellent job educating legislators on the issue. Individuals with disabilities and families made the case with their compelling personal stories. And LDH leadership clearly communicated that rate restoration was a priority! It was a collaborative effort that worked! While the 2008 rates do not account for inflation, this is a HUGE first step in the right direction of ensuring quality services for individuals with disabilities and their families. In addition to this rate package, HB105 includes: Language directing LDH to begin a program to serve the TEFRA population beginning on or before June 1, 2020, pending CMS (federal Medicaid agency) approval; (more details below) $1 million in additional state funds for Northwest LA Human Services District; and $1 million in additional state funds for Florida Parishes Human Services Authority. HB199 by Representative Dodie Horton sailed through both chambers of the legislature unopposed with 48 representatives and 24 senators signing on as co-authors. Known as the TEFRA bill, HB199 requires LDH, pending CMS approval, to begin a program to provide health care services via the state's Medicaid program to children in the TEFRA population no later than June 1, 2020. The bill was amended several times throughout the process, mainly to avoid a fiscal impact in the FY20 budget and to control the fiscal impact in future years. The creation of this program in statute is also a huge accomplishment. The Council and advocates have advocated for the implementation of TEFRA numerous times over the past 28 years, and while support, and even funding, were provided by the legislature, both of these were withdrawn at the eleventh hour. The final version of HB199 gives LDH the leeway to determine the number of children served and to define the population group. Ongoing advocacy by the Council and parents will be needed to ensure all children with developmental disabilities are included in the plan submitted to CMS. Results for Education Parents passionately testified and advocated throughout session for protections for their children who are served in special education self-contained classrooms. HB283 by Representative Mark Wright would have required cameras be placed in these classrooms upon a parent's request. It is well documented that students with disabilities, particularly students who are non-verbal, are at a greater risk of abuse and do not have the communication skills to self-report this abuse. Not only would video and audio surveillance increase student safety, it would also protect educators from false accusations and promote improved training to address student challenging behaviors. Unfortunately, HB283 did not pass the legislature. However, parents are very happy with the passage of Act 117 (HB320) by Representative Scott Simon. Act 117 amends current law to include Applied Behavior Analysis (ABA) providers in the definition of a behavioral health service provider in order to allow these providers access to students during school hours upon request of the parents. It also requires each public school governing authority to make public its policies regarding behavioral health services being provided to students while at school. Senate Bill (SB) 78 by Senator Danny Martiny brought a companion bill to Act 117 that did not pass. Other Bills of Interest Act 57 (HB143) by Representative Malinda White, also known as Evie's Law, prohibits discrimination against potential organ transplant recipients based on disability. HB160 by Representative Joseph Bouie requires the collection and reporting of certain information relative to school safety and discipline including numbers of school resource officers and student suspensions, expulsions, removals to alternative settings, referrals to law enforcement, and school-related arrests. This bill is currently awaiting executive approval by the Governor. HB390 by Representative Malinda White requires LDH to collect and maintain reliable data regarding disability service provider rates and determine the sufficiency of each rate. It also requires LDH to submit an annual report to various legislative committees that includes any changes to the Medicaid rate methodology for disability services, current Medicaid rates for services, information on past and upcoming rebasing of intermediate care facilities for people with developmental disabilities, funding needed to adjust rates annually based on inflation, and any proposed changes to the current rate methodology. This bill is currently awaiting executive approval by the Governor. HB507 by Representative Neil Abramson requires a fee be assessed on sales of therapeutic marijuana with the proceeds being deposited into the Community and Family Support System Fund. It also stipulates that no less than 50% of the proceeds be used toward EarlySteps funding. This bill is currently awaiting executive approval by the Governor. SB120 by Senator John Milkovich threatened to allow any school personnel to remove students from a school campus, allow the use of force and physical restraint, and involve law enforcement in the removal of students from campus in response to student behavioral challenges. This bill failed to make it out of committee. SB137 by Senator Wesley Bishop sought to rearrange all the laws related to student discipline and behavior to group similar items together. The goal was to improve readability based on a recommendation by the Advisory Council on Student Behavior and Discipline (ACSBD) to rearrange one section of the law (i.e., R.S. 17:416). However, after the ACSBD's Legislative Workgroup reviewed a cross reference of SB137 to existing laws, it was realized SB137 contained some significant language changes to existing statute. Some of the changes identified would be problematic for schools, and due to the massive amount of cross-references, the group could not be certain all differences to law in SB137 were identified. Senator Bishop did not move this bill forward. SB151 by Senator Jay Luneau authorizes the transfer of the Louisiana Special Education Center from the Special School District to LDH and renames the center the Central Louisiana Supports and Services Center. This bill is currently awaiting executive approval by the Governor. SB158 by Senator Jack Donahue requires each local public school superintendent and the administrative head of each charter school to establish a special education advisory council to provide advice and feedback regarding special education policies, procedures, and resources and engage in community outreach. It also requires 50% of the advisory council membership be made up of parents of students with an exceptionality other than gifted and talented. This bill is currently awaiting executive approval by the Governor. SB173 by Senator Fred Mills would only take effect should the Patient Protection and Affordable Care Act (ACA) be ruled unconstitutional. This law would provide standards for open enrollment, rate setting, and coverage for dependent children who are under the age of 26. It also prohibits preexisting condition exclusions and annual and lifetime limits. This bill is currently awaiting executive approval by the Governor. Other bills similar to this issue did not pass (HB237 by Representative Chad Brown and SB219 by Senator Regina Barrow). Check out the Council's website for a full list of the issues and bills monitored by the Council during the 2019 Legislative Session.
ABOUT LaDDC The Louisiana Developmental Disabilities Council is made up of people from every region of the state who are appointed by the Governor to develop and implement a five year plan to address needed changes in the service delivery system for persons with developmental disabilities. Membership includes persons with developmental disabilities, parents, advocates, and representatives from public and private agencies. Several members rotate off the Council each year and applications for new members are always welcomed. Developmental Disabilities Councils were founded in 1970 as a result of the passage of the federal Developmental Disabilities Assistance and Bill of Rights Act. The Louisiana Council was established in 1971. Councils were created to engage in advocacy, capacity building and systems change activities and contribute to a coordinated, consumer- and family-centered, and consumer- and family-directed comprehensive system of community services, individualized supports, and other forms of assistance that enable individuals with developmental disabilities to exercise self-determination, be independent, productive, and integrated and included in all facets of community life.
Understanding Supplemental Security Income SSI and Other Government Programs - 2019 Edition
SUPPLEMENTAL SECURITY INCOME (SSI) AND ELIGIBILITY FOR OTHER GOVERNMENT AND STATE PROGRAMS Many people who are potentially eligible for SSI benefits do not know how receiving SSI affects their benefits or payments from other government and State programs. MEDICAID In most States, if you are an SSI recipient, you may be automatically eligible for Medicaid; an SSI application is also an application for Medicaid. In other States, you must apply for and establish your eligibility for Medicaid with another agency. In these States, we will direct you to the office where you can apply for Medicaid. Please see the Medicaid site for consumer information at www.medicaid.gov. SUPPLEMENTAL NUTRITION ASSISTANCE PROGRAM (formerly "FOOD STAMPS") The Supplemental Nutrition Assistance Program (SNAP) provides help for low-income households to buy the food needed for good health. If you receive SSI, you may be eligible to receive SNAP assistance to purchase food. If you are applying for or receiving SSI, you are able to get SNAP information and an application form at your local Social Security office. If all other members of your household apply for or receive SSI, and you apply for or receive SSI, we will help you complete a SNAP application. If you and all other members of your household already receive SSI and SNAP, you may be able to complete the SNAP forms for a recertification at your local Social Security office. SSI benefits count in computing SNAP eligibility. In some States, the SSI application is also an application for SNAP if the individual lives alone. Please see the SNAP and other nutritional programs website at SNAP TEMPORARY ASSISTANCE FOR NEEDY FAMILIES (TANF) The TANF program provides cash block grants to States. TANF gives states the flexibility to determine TANF eligibility rules and to set TANF payment amounts. In a household receiving TANF, we pay SSI benefits only to the blind or disabled adult or child, or age 65 or older member(s). AFFORDABLE HEALTH INSURANCE FOR CHILDREN WHO NEED IT Medicaid provides free health coverage to most low-income children through State children's health insurance programs. Contact your local State or local medical assistance (Medicaid) office, social service office or welfare office for more information. STATE OR LOCAL ASSISTANCE BASED ON NEED Some States offer state or local assistance based on need to aged, blind, and disabled people through the State welfare department. The State may require you to apply for SSI if you receive state or local assistance based on need. If we approve you for SSI, your State or local public assistance payments will usually stop. Your state may be entitled to collect part of your retroactive SSI benefits as repayment for the money they paid you while we processed your SSI claim. SOCIAL SECURITY, MEDICAID AND MEDICARE Many people receive both SSI and Social Security benefits. Medicaid is linked to receipt of SSI benefits in most States. Medicare is linked to entitlement to Social Security benefits. It is possible to get both Medicare and Medicaid. States pay the Medicare premiums for people who receive SSI benefits if they are also eligible for Medicaid. If you get SSI and have Medicare, you will also be eligible for Extra Help with Medicare Prescription Drug Coverage without filing a separate application. See the web site at: www.ssa.gov/medicare/prescriptionhelp/. STATE PROGRAMS THAT HELP WITH MEDICARE COSTS – MEDICARE SAVINGS PROGRAM You may qualify for help with certain Medicare costs under the programs below if: you receive Medicare; and your income and resources are limited Contact your State, county or local medical assistance office, social service office, or welfare office to find out if you qualify for Medicare Savings Programs. To get the phone number for your State Medicaid office, visit Medicare.gov/contacts online. First, choose your state under “Choose your location for contact information,” and then, under “Choose an organization OR topic of interest,” select “State Medical Assistance Office” at the bottom of the list of options. Qualified Medicare Beneficiary (QMB) Program The QMB program helps low-income Medicare beneficiaries by paying Medicare Part A and/or Part B premiums. Medicare providers are not allowed to bill you for Medicare deductibles, coinsurance, and copayments. Specified Low–Income Medicare Beneficiary (SLMB) Program or Qualifying Individual Program (QI–1) The SLMB and QI–1 programs will pay Medicare Part B premiums only. Your resources should not exceed $7,730 if you are single or $11,600 if you are a couple. Several items, like your home and a car are not counted. Also, some States use higher resource limits. Qualified Disabled and Working Individual (QDWI) The QDWI program will pay Medicare Part A premiums only. If you are under age 65, disabled and no longer entitled to free Medicare Hospital Insurance Part A because you successfully returned to work, you may be eligible for a State program that helps pay your Medicare Part A monthly premium. To be eligible for this help, you must: continue to have a disabling impairment; sign up for premium Hospital Insurance (Part A); have limited income; not have resources worth more than $4,000 for an individual and $6,000 for a couple. Your State will not count the home where you live, usually one car and $1,500 in burial expenses (per person) as resources; and not already be eligible for Medicaid. To find out more about the QDWI program, contact your local, county, or State Health Insurance Assistance Program (SHIP) or Medicaid office. Louisiana Medicaid Louisiana Medicare Savings Program
Free WEBINARS
What's Going On?
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: Bayou Land Families Helping Families Date: Monday, July 1, 2019 Time: 11:00 am – 12:00 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, July 1, 2019 Time: 12:30 pm – 1:30 pm Audience: Parents, Caregivers, and Professionals of School-Aged Children/Students. No More Summer Slide - Summer is the perfect time for students of all ages to relax, but it’s also a time when summer learning loss can occur. This learning loss is called the “summer slide,” and happens when children do not engage in educational activities during the summer months. This training will provide you with strategies and fun activities you can do over the summertime to help prevent the summer slide. Date: Wednesday July 10, 2019 Time: 10:00 am – 11:00 am Audience: Parents, Caregivers, and Professionals of School-Aged Children/Students. Introduction to Special Education - Do you suspect your child could benefit from special education and related services? Or, Is your child newly evaluated? If so, this training is perfect for you. This intro to special education will give you a strong foundation to build future knowledge. You will learn the very basics through the philosophy of special education, the laws, evaluation process, and ultimately an IEP. Co-Sponsor: Families Helping Families of Northeast LA Date: Wednesday, July 10, 2019 Time: 9:00 pm -10:00 pm Audience: Parents, Caregivers, and Professionals of School-Aged Children/Students. Fun Summer Activities for All Kids - We’ve taken some of our favorite things in our 2019 Guide to Summer Fun for Children with Disabilities and highlighted them in this training. The goal is to give families and caregivers ideas of fun things they can do over the summer that doesn’t need to cost a lot. Many things are either free or low cost. Part of this is specific to the Greater New Orleans area. Co-Sponsor: Bayou Land Families Helping Families Date: Friday, July 12, 2019 Time: 10:00 am – 11: 00 am Audience: Parents, Caregivers, and Professionals of School-Aged Children/Students. How to Introduce Your Child to New Providers? - Parents rave about our in-house publications All About Me and My Portfolio and the usefulness in introducing their children to a variety of new service providers such as teachers, DSP’s, Therapists and more. Join us for this webinar where we will provide you access to these publications, instructions on how to personalize them for your child, and things you need to think about including in your personalized publication. If you do not have access to a printer, email us your publication, and we’ll be happy to print them out for you. Co-Sponsor: Families Helping Families of Acadiana Date: Tuesday, July 16, 2019 Time: 11:00 am – 12:00 pm 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: Families Helping Families of Southwest LA Date: Monday, July 22, 2019 Time: 11:00 am – 12:00 pm Audience: Parents, Caregivers, and Professionals of School-Aged Children/Students. Educational Plans: IEP’s vs. 504 Plan - Students with disabilities will usually qualify for either an IEP or a 504 Plan – but what is the difference and is one better than the other? This training will take you through the eligibility process of both plans, the laws that regulate both, the differences in the plans and parental rights. Co-Sponsor: Families Helping Families of Southwest LA Date: Tuesday, July 23, 2019 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: Families Helping Families of Northeast LA Date: Tuesday, July 23, 2019 Time: 7:00 pm – 8:00 pm Audience: Parents, Caregivers, and Professionals of School-Aged Children/Students. Accommodations vs. Modifications - Meeting after meeting, parents and teachers use the words “accommodation” and “modification” almost interchangeably when discussing IEPs and student needs. If understood and used correctly, these words can greatly impact the success of a child’s educational program. Get answers to these questions and more: How can accommodations and modifications help my child in the general education classroom? How is it included in IEP and which accommodations are provided for state testing? Date: Saturday, July 27, 2019 Time: 10:00 am – 11:00 am Audience: Parents, Caregivers, and Professionals of School-Aged Children/Students.
J U L Y 2 0 1 9
By Carol Nanney
When you hear the words “summer slide,” what images pop into your mind? A park slide? A water slide? Sunshine and summer fun? Wrong. The “summer slide” has nothing to do with a fun summer pastime. Instead, it’s a term used to describe the tendency for students to decline in achievement gains during the summer months when school is not in session. This phenomenon is especially prominent among students from low-income families who often lack access to books over summer break. Luckily, there are many ways to prevent the summer slide. Giving children access to books plays a critical role in warding off summer learning loss. When students keep reading, they keep learning. Here are 7 tips for parents and caregivers to help keep children engaged in reading during the summer months: Create a fun reading space - Set up a tent or create a reading fort. Add comfy pillows, bean bags and blankets along with a basket of books to make a fun, relaxing spot for reading. The possibilities are endless. Make a reading routine - Set aside a specific time each day to dedicate to reading. By making it a priority, you relay the message that reading is important. Make time to read together in addition to creating time for children to read on their own. A nighttime reading routine can help children associate reading with relaxing. Be a role model - Get caught reading! Children are known to model the actions of adults they love. When they see you enjoying a good book, they will follow your lead. Also, be a role model by reading aloud to your child no matter their age. Ensure reading materials are readily available - Make books easily accessible in the most used rooms of your home and carry them with you everywhere. Keep selections in your car. It’s also helpful to carry a bag of books for doctor visits, shopping trips, and long waits. Make reading an adventure: Visit libraries, bookstores, and take field trips - Take your child to your local library or bookstore. Picking out a book can be just as much fun as reading one. Sign up for a library card and take advantage of summer reading programs at your local public library. Feeling extra adventurous? Try a reading-inspired field trip! For example, if you read a book about dinosaurs, plan a visit to a local museum to learn more about them. Or, if you read a book about flowers, visit a local botanical garden. Encourage choice - Reading should be a choice not a chore. Allowing your child to choose the books they read gives them a sense of control. Graphic novels, magazines, nonfiction and newspapers should also be options in reading for pleasure. Allowing choice in reading materials goes a long way in raising life-long readers. Introduce your child to series - A book series can help keep reading interest high by keeping the “what happens next?” factor engaged. Series also address the problem of stalling between books because it eliminates the problem of figuring out what to read next! Remember, the secret to preventing summer slide is to keep learning all summer!
7 Tips to Help Parents Make Summer Reading Fun
Carol Nanney is a PreK-4 librarian at McKenzie Elementary School, a rural school in Northwest Tennessee where she has served for 26 years. Before becoming the librarian, she taught second grade. She is the 2018 West Tennessee Teacher of the Year and currently serves on the Teacher Advisory Council for the Tennessee Department of Education.
2019 Adult Summer Reading Program The 2019 Adult Summer Reading Program slogan is Universe of Stories. Participating libraries will encourage adults to involve themselves by reading books throughout the summer and attending library programs. Check with your local public library to learn the specific incentives and library programs available for adults in your community.
2019 Teen Summer Reading Program The 2019 Teen Summer Reading Program slogan is Universe of Stories and will be offered by public libraries throughout the state. Teens may participate by reading books throughout the summer and attending library programs. The goal of the Teen Summer Reading Program is to offer a variety of activities to draw teens into the library, encourage them to continue reading over the summer, and to cultivate a love of reading in Louisiana’s next generation. Families are encouraged to check with their local public library to learn about specific incentives and programs available for teens in their community.
2019 Children's Summer Reading Program (CSRP) The 2019 CSRP slogan is, A Universe of Stories, and will be offered by public libraries throughout the state. Children participating in the summer reading program may participate by reading books throughout the summer and attending library programs. The goal is to foster self-confidence and create lifelong readers. Families are encouraged to check with their local public library to learn about the specific incentives and programs available in their community. The 2019 children’s artwork was created by award-winning author and Illustrator Leeza Hernandez.
State Library of Louisiana Public Libraries Talking Books and Braille Library
Dreaming
At 18 months, we brought my son to the pediatrician because he had stopped speaking and pointing. We were assured that Liam was fine and probably just concentrating on gross motor skills – because that is what boys do, so not to worry. His words were meant to reassure me that nothing was wrong, but I was still worried. At age two, the autism diagnosis hit. This time the doctor spoke these words to us – in front of him: “He will never talk again. He will likely require institutionalization. There are no effective/significant treatments we can try…not here in South Louisiana anyway. I’m sorry. There really isn’t anything you can do but you need to do all you can before age 6. After that, we don’t usually see progress.” We changed doctors. Not because we were angry. We changed because our son was barely two years old with an entire life ahead of him. He could live to be 100 years old and no one can accurately predict the next week, much less the next 98 years for him. He could actually have a life full of promise. We needed a team for Liam that rested in hope for his future, a team that spoke life over him, and our family. We quickly found a group who helped us set small, realistic building block goals, research available and attainable treatments and build out a proactive plan. What you speak matters. Whether you are talking to yourself in the mirror or to your child. Children with autism may not speak back to you, but that doesn’t mean they aren’t listening to every word you say. It doesn’t mean that they don’t hear what you utter or murmur in front of them. From time to time when frustration and exhaustion build, people fall prey to sarcasm, angry words or words filled with despair. No one is perfect. But when you are raising a child with special needs, you need to take extra special care that the words you speak are rooted in life, hope, faith and encouragement. Why? Because words shape behavior – theirs and yours – and point you towards reaching for success or embracing defeat. Our family chose words of life and at 3.5 years of age, Liam’s words started to slowly return – one by one. As we got one…we pressed for one more. At age six, his first major communication breakthrough arrived on Labor Day weekend. For two days, he wandered around constantly saying, “Red circle. Green stick.” Halfway through day three, I put him in the car, drove to the end of the street and said, “Point where you want to go.” He pointed left. I drove to the next intersection. Asked again and he pointed again. We kept this up driving 10 mph for 40 minutes across town until I saw it – the Target sign. He screamed from the back seat, “RED CIRCLE, MOMMA!” We ran inside hand in hand straight to the refrigerated section. He grabbed a box of lime green Jell-O tubes, held them up, smiled and said, “Green stick, Momma.” I fell on the floor and cried, then made the best purchase of something 100% not on his strict diet…ever. Nothing was the same after that. I had tried to believe for four years that this day would come. Now it was here. Progress continued slowly and steadily but no huge leaps or bounds until he hit his teen years. When he was 13, he told me he wanted to work at McDonald’s. I almost threw up because I still walked him into class every day to ensure his safe delivery to the teacher. How was I going to let kids a couple of years older than him supervise him while he was near hot grease and unlocked doors? That was my problem. Not his. Those were my fears. Not his. So, we reassembled the team to help us design a program to teach him all the things he would need to know to land the perfect job, and help me calm down. At 14, Liam indicated an interested in Boy Scouts. He got a late start, but the troop accepted him. His father – who had achieved Eagle Scout rank like my brothers, was thrilled and served as an Assistant Scout Master. Liam started to make genuine friends. On his 16th birthday, he walked into the McDonald's where he wanted to work, filled out his own application, nailed the interview, demonstrated his enthusiasm for getting the job by clearing the table next to the manager, and has worked there for over 7 years. He is building his resume. A lot of 23-year-old guys can’t say they have worked somewhere for over 7 years. At age 17, the seeds of faith that we had sown into Liam’s life had begun to grow. One day in church, he leaned over and asked if he could be baptized. I had no idea how to teach him about God or our faith and finally prayed and asked God to take over in that department. His faithfulness shone through with Liam’s request and 3 months later, Liam was baptized while our pastor gave a special sermon about wearing the armor of God and relentlessly fighting to overcome. Today, Liam has a very strong faith and is a prayer warrior himself. At the age of 18, his father applied for a special extension with the Boy Scouts of America so that he could achieve his Eagle Scout Rank before his 21st birthday. Liam developed his own Eagle Scout project which was very meaningful for him because he remembered being scared in an ambulance ride at 4. He raised over $5500 for carts for Our Lady of the Lake Children’s Hospital that deliver art supplies, toys and comfort items to inpatients. At 20, Liam graduated from his high school in regular classes (with a special study period and an IEP) with a 3.2 average. He absolutely can speak. He can read well – mostly subjects he is interested in, but as a result he is a wealth of knowledge. He is conversational and can swim in the deep end of the philosophical pool from time to time providing us with witticisms and wisdom. He can write. And he can advocate – for himself and for others. He has testified before the state legislature. He has spoken with lawmakers in Washington, DC. He independently wrote to the CEO of McDonald's to ask them to please supply pudding in Happy Meals because after years of throwing away unopened yogurt containers, it was clear to him that “kids don’t like yogurt, sir. They like pudding.” The CEO responded (which is how I found out he sent the letter in the first place) with a letter, a McDonald’s keychain and a pen…and told Liam he was probably right. He wants to grow up and have a family. He loves children. He is looking for a nice redheaded girl who will be very sweet and kind to him. He has plans for his own future now and is directing us in pursuit of his own dreams. He wants to be a baker and makes amazing cupcakes. BONUS: cleans the kitchen afterwards and you never even knew he was in there – treats just appear on the counter! But the most important thing now that we want everyone behind us in this journey to realize is that life didn’t stop at age 2, and it wasn’t over at age 6. It didn’t really kickoff until age 13. Today, at the age of 23 although he still faces challenges, like we all do at every stage in life, we are committed to facing them together, as a united team, with great faith that he will now direct us as he steps into his future.
Never Give Up
By Shelley Hendrix
"At age 17, the seeds of faith that we had sown into Liam’s life had begun to grow."
"I have a dream that one day this nation will rise up and live out the true meaning of its creed - we hold these truths to be self-evident: that all men are created equal." Martin Luther King, Jr.
“Why don’t you let him do that himself?”
Almost all of us have had a parent or guardian utter the words, “Just wait until you get older; you will understand.” As a teenager with Cerebral Palsy in a single parent household, I thought I would never understand why my mother made me do things that, as she would say, “will increase your independence as a person with a disability.” I can say with the utmost certainty that there were times I hated my mother for all the things she made me do. But any person who knows me well would tell you I am 150% a mama’s boy. I would not be the person I am today without being loved, supported, protected, and pushed by my mom. When I say I was pushed, my life from age 6 to 25 was an ongoing independent living and vocational assessment. “Experts” would tell my mom things like, “Your son will never make friends, have a job, or live independently. What if he gets hurt physically or emotionally?” Until Kindergarten, my mom bought into that mindset; she would do everything for me and make sure I was provided for and protected at all times. Providing that level of care day in, day out is exhausting. I will never forget the morning everything changed. We were going through the before-school routine and my mom was rushing around to get me ready and on the bus. Her boyfriend at the time said, “Why don’t you let him do that himself?” My mom looked at him and said nothing; that next weekend, my clothes were picked out and set on my bedroom floor and I was told to get dressed. My mom shut the door and walked away. After what my mom says seemed like forever, I emerged from my bedroom fully dressed. I was forced to find my own way. This process of finding my own way was applied to several tasks that were difficult or “impossible” for me to do throughout my life, like: cooking, tying my shoes, putting on a coat and winter gloves, buttoning a dress shirt, cutting food with a knife, and doing household chores like vacuuming and laundry. In the moment, I hated learning those skills, but my mom took what others thought was a risk and gave me the space to fail and ultimately learn how to do things. When I would ask why I had to learn to do these things on my own, my mom would say, “Do you want a girlfriend some day? Women love a man who can do their chores well. You may not be able to do everything a man without a disability can do, but the things you can do you will be able to do better than anyone.” This “risk” my mom took paid off. I am now happily married and I was even able to make a small business in college out of charging my dorm mates a small fee to learn how to do their own laundry through my expert training. In teaching me all of these independent living skills, my mom learned to apply the “find your own way” approach to employment and social experiences. Instead of shielding me from adversity, failure, and heartbreak, she encouraged me to try jobs, go to parties, date, and go on road trips. Of course I tried jobs that were not a good fit for me. I got in trouble at parties and was pulled over in a car that was going too fast. I even got left at my senior year homecoming because my date, “just could not see herself really dating a guy in a wheelchair.” For all these negative experiences, I have had great jobs, epic parties, great girlfriends, and road trip vacations that will be etched in my mind forever. My mom supported me every step of the way. I am now 34 years old and my mom and I have a relationship that my friends say is “extremely open and honest.” Our relationship has evolved in that way because after every experience, my mom and I would discuss how things went and what I learned (yes, we talked about the tough topics too.) While I hated these conversations sometimes, it was helping me advocate for myself and evaluate my life goals. The best learning takes place through experience and reflection. If you are a parent or guardian, I encourage you to create opportunities for your youth or young adult to find their own way. Taking risks and failing is a part of experiencing life. Start with baby steps and grow from there. If you are a youth or young adult, understand that for your family members, letting you be independent and take risks is not easy. Respect the rules they make for you and look at every experience you have as an opportunity to learn and build trust with the people you love. But never forget to advocate for yourself and find your own way.
Finding Your Own Way: Dignity of Risk
By Everett Deibler, Learning Specialist Accessibility and Special Programs Lehigh Carbon Community College
Presenting to Peers "Finding My Voice"
Partners in Policymaking
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, (May 14, 2019). Finding Your Own Way: Dignity of Risk, Newark, NJ, Everett Deibler. © 2018 RAISE Center
"If you are a parent or guardian, I encourage you to create opportunities for your youth or young adult to find their own way. Taking risks and failing is a part of experiencing life."
Everett Deibler is currently a Learning Specialist at Lehigh Carbon Community College (LCCC), where he coordinates college-wide accessibility efforts and supports the SEED Program, which is the college’s inclusive higher education initiative. Before joining LCCC, Everett spent the last decade supporting thousands of youth and young adults in exploring their leadership, employment, and independent living goals with various organizations across Pennsylvania, including the Office of Vocational Rehabilitation (OVR), LVCIL, and the Pennsylvania Youth Leadership Network.
National Center on Improving Literacy Your source for improving outcomes for students with literacy-related disabilities, including dyslexia. KID ZONE! - The Kid Zone! was created with kids in mind. But it also is a place where families can connect with one another. Parents and caregivers play an important role in promoting and supporting children’s literacy development. You can do this by listening, looking, helping, and encouraging while your child explores the Kid Zone! In the Kid Zone!, you and your child can access ebooks, audiobooks, and stream videos of stories read aloud. Bookshare - Ebooks for people with reading barriers. Bookshare makes reading easier. People with dyslexia, blindness, cerebral palsy, and other reading barriers can customize their experience to suit their learning style and find virtually any book they need for school, work, or the joy of reading. Bookshare is FREE for qualified U.S. students of any age. Check Out OverDrive - Borrow eBooks, audiobooks, and more from your local public library - anywhere, anytime. All you need is a library card. OverDrive accounts are FREE! Resources at Your Library - Public libraries are a great resource for your child’s literacy learning. They often provide free literacy events, in addition to children’s audio and print books. Library staff can help find resources to support your child’s learning at home. Check your local library to see what it offers! Talking is Teaching | Early Literacy Skills - Parents can help children building early literacy skills right from the start! Check out our new resources for fun tips and ideas to make everyday moments opportunities to nurture growing readers and writers. Reading is Fundamental | Literacy Central - Create engaged readers when you use Reading Is Fundamental’s Literacy Central. This award-winning digital library hosts over 10,000 resources directly tied to the books teachers, caregivers and community partners turn to everyday. Organize all of your book resources in one place, create and share book lists, find helpful reading tips and strategies and track student reading progress by creating and signing into your free account today. Start with a Book | Read. Learn. Explore! - Summer is the perfect time to have fun with your child and strengthen reading and writing skills at the same time. Discover everyday literacy activities and get some tips on how to explore language and new words, practice writing, and build your child’s bank of background knowledge (what he knows about the world). Read.gov | Explore New Worlds. Read. - The Center for the Book in the Library of Congress invites people of all ages to discover the fascinating people, places and events that await you whenever you read.
Resources for FAMILIES & EDUCATORS
July Awareness
300,000 CHILDREN IN AMERICA HAVE ARTHRITIS And we need your help spreading the word. JULY IS JUVENILE ARTHRITIS AWARENESS MONTH That’s right, kids get arthritis. It is a common misconception that only “old” people are afflicted with arthritis. Nearly 300,000 children in America have been diagnosed with juvenile arthritis. Take action NOW! In just 2 clicks! Click here to tweet it out for Juvenile Arthritis Awareness Month!
Cord Blood Awareness Month International Group B Strep Throat Awareness Month Juvenile Arthritis Awareness Month National Cleft and Craniofacial Awareness and Prevention Month World Hepatitis Day (July 28)
Group B Streptococcus (GBS), or Streptococcus agalactiae, is a type of bacteria that is naturally found in the digestive and lower reproductive tracts of both men and women. About 1 in 4 pregnant women "carry" or are "colonized" with GBS. Carrying GBS does not mean that you are unclean. Anyone can carry GBS. GBS is not considered to be a sexually transmitted disease or infection as it can occur on its own even in someone with no prior sexual experience. However, bacteria can be passed between sexual partners, including through oral contact. (For more info on this, please read the medical articles on our website under Sex & GBS.) Unfortunately, babies can be infected by GBS before birth and up to about 6 months of age due to their underdeveloped immune systems. There are three types of perinatal GBS disease, each with their own prevention challenges: Prenatal-onset GBS disease (before birth) Early-onset GBS disease (birth through the first week of life) Late-onset GBS disease (over 1 week of age through several months of age)
For the child or adult facing challenges because of a disability, planning ahead for hurricane season takes added time and thought. Planning may mean stocking up on hearing-aid batteries or keeping an emergency supply kit in a walker or wheelchair. For a child or person with autism, it may mean packing a computer game or headphones to help ease stress. It could mean showing others how to operate a wheelchair. Caregivers play a critical role in hurricane preparedness for those with disabilities. Here are some tips to help everyone prepare: General tips Talk with friends, family or a support network about how to stay in touch. Keep phone numbers for doctors, aides and family in a sealed waterproof bag. Pack eyeglasses, contact lenses, hearing aids and dentures in an emergency kit. Ask neighbors or someone in your support circle to help keep you informed. Plan ahead for accessible transportation in case evacuation becomes necessary. Identify the closest shelter in case you need to leave your house. Identify which medical facilities are close to your house or shelter. Wear medical alert tags or bracelets with information about healthcare needs. Plan and practice for an evacuation, and remember to take your medical devices in a waterproof bag. Have at least a 10-day supply of prescription medicines along with copies of prescriptions; list of all medications and dosage; list of allergies; list of dietary restrictions. Make plans for a pet, including a note for emergency responders: I have a service animal named ____, who must evacuate with me. Tips for people who are deaf or hard of hearing Get a weather radio with text display and a flashing alert. Stock up on extra hearing-aid batteries and protect them with a plastic bag. Carry pen and paper to help communicate with someone who does not know sign language. Have access to TTY and/or VRS. Tips for people who are blind or have low vision Carry a picture of your family members to help connect you with them in an emergency. Mark emergency supplies with Braille labels or large print. Keep a list of emergency supplies on a portable flash drive or make an audio file and keep it in a plastic bag and where it’s easy to find. Keep a Braille or deaf-blind communications device in an emergency supply kit. Practice your evacuation route and be comfortable getting to your family’s meeting point. Tips for people with a mobility disability Make sure all assistive devices that depend on electricity or batteries are working and keep your batteries in a waterproof bag. Keep an emergency supply kit in a backpack attached to your walker, wheelchair or scooter. Show others how to operate your motorized wheelchair, and have a lightweight manual chair available as a backup. Keep an extra cane or walker for emergencies. Keep an extra seat cushion to protect your skin or maintain your balance, and take it along if evacuation becomes necessary. Tips for children and adults with autism Familiar items will help children adjust to new surroundings and ease the stress of the transition. Remember to pack their favorite toys, movies and computer games. Headphones or earplugs can dampen the noise in unfamiliar settings. Consider bringing duct tape to mark the perimeters of your family’s assigned space in a communal shelter. Children with autism often wander away. Work with teachers, police and community members as you develop safety plans to help protect children from dangerous situations. Tips for people with a mental health condition The stress that comes with an emergency can be hard to manage. Be ready to provide important information specific to your situation, or write it down and keep it with you. For example: “I have a mental health condition and may become confused in an emergency. Please help me find a quiet place. I will be okay shortly.” The range of needs runs wide and effective planning runs deep. Be ready for the hurricane season and help those who may need neighborly assistance.
Hurricane Preparedness for People with Disabilities Takes Time, Thought
Department of Homeland Security
Louisiana is a wonderful place to live. All year long, there are so many attractions, festivals, parades, arts, museums, and events going on around our beautiful state. There’s never a dull moment! Inside this guide you will find special needs summer camps and many ideas for things to do and places to visit with your family throughout the summer. From museums, nature centers, and theaters… to activities at home. You will find endless possibilities for enjoyment, learning, and relaxation. This guide is meant to be an Internet resource. Please review these offerings to determine if they suit the needs of your family.
My son, Joey, is a kindergartener and was also diagnosed with ADHD. I reached out to Families Helping Families of Greater New Orleans (FHF) because his school was trying to expel him. I was confused and frustrated by what they were trying to do. As his mother, when the school told me my son needed something I provided it. At the end of the day, I felt the school betrayed our trust in them. He needed something from them to help him succeed in school and it was not offered or provided. I don’t think I would have been able to get the help that we needed if it were not for FHF. They providing me with a tremendous amount of support and the information I needed regarding our rights to a free and appropriate public education. They helped me organize my thoughts and actions onto paper so I could address each one of my questions and educational concerns with the school. I was now knowledgeable and not afraid to speak up and voice my concerns to the school regarding the support they did not provide Joey. When everything was said and done my child was not expelled from school and the school finally started taking the proper steps to evaluate him and see what was needed to help him succeed. I could not be more grateful for the wonderful support from FHF and Laura Nata. She is awesome! She would call and check on Joey and me almost every day. She would stay up late on the phone with me teaching and explaining how things worked for evaluating and helping children with special needs. Most of all, on the scariest day of them all, the day of my son’s hearing she was right by our side. I can’t thank FHF enough and would recommend them to all parents that have children that are struggling in school.
By Starr Joaquin
"They providing me with a tremendous amount of support and the information I needed regarding our rights to a free and appropriate public education."
Success Story
Joey Joaquin
ADULT WORKFORCE Our 60-hour Introduction to Programming Bootcamp is a deep dive into JavaScript, functional programming, and basic web development. Bootcamp prepares students for entry into our three month Immersion program. Our Immersion program is more rigorous and time-consuming than most educational programs or full-time jobs. Over the course of 3 months, students learn how to think like a software engineer and gain all of the relevant skills needed to enter into a career as a full-stack engineer. Learn more.
OPERATION SPARK 2539 Columbus St, 3rd Floor New Orleans, Louisiana (504) 534-8277
HIGH SCHOOL The High School to High Wage program provides an introduction to computer programming and is designed for students with little to no prior experience in coding. It aims to teach students the core concepts of computer programming, basic front-end web development skills, and provides students with an understanding of the role computation can play in solving problems. Learn more.
Operation Spark is opening a new door to prosperity for low-opportunity individuals by presenting the fastest route to a career in software development.
A CAREER FOR EVERYONE The field of software development is quite wide. And so no matter your interests or apptitude, there's certainly a career for you in software development. You just need to build a few apps with an awesome team to start discovering all that software has to offer. The skills involved in building mobile video games and apps are quite varied, including application design, game mechanics and user experience, visual and sound design, computer engineering of various sorts, quality assurance, project, product and cost management, content management and public relations of all kinds. And each of these skills lead to careers, careers with futures - for example, an entry level quality assurance analyst is a well paying position, and can lead to management or a career as a UX designer. Working in teams, inherently a part of software development, also introduces youth to effective means of communication and conflict resolution. The Operation Spark model is simple: By introducing young adults to this wide set of skills and helping them apply these skills in building simple projects, something as engaging to today’s youth as a mobile video game or app, participants may just discover a very employable field about which they are passionate. And for youth, developing a passion is key to positive self development, encourages self learning and the pursuit of a path into college or the workforce!
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.
