Living with Spina Bifida: School-Aged Children

Starting school brings children into regular contact with the larger world. Friendships become important and physical, social, and mental skills develop rapidly during this time. Children who feel good about themselves are more able to resist negative peer pressure and make better choices.
This is an important time for children to become more responsible and independent. This is also a good time to start exploring potential lifetime interests such as hobbies, music, or sports. Developing independence can be challenging for people affected by spina bifida. It is important to begin working on this process early in childhood.

Do Colleges Have to Follow IEPs or 504 Plans?
by Elizabeth Hamblet, LDAdvisory.com

It's easy to understand why there is so much confusion about whether colleges have to follow the IEPs or Section 504 plans that students had in high school.

If you look at the text of the Individuals with Disabilities Education Act (IDEA), the law that provides for IEPs, or at Section 504 of the Rehabilitation Act of 1973 (Section 504), you won't find any wording that explicitly says that students' plans "expire" or come to an end when students graduate from high school (or "age out" of the system).

The services in a student's IEP and/or a high school level Section 504 Plan end when the student graduates from high school.

Colleges may use these plans to help in decision making but they are not required to follow the requirements of these plans. But this doesn't mean colleges don't offer accommodations to eligible students.

Colleges often provide the same or similar accommodations if the accommodations are typically available at the college level, such as extended time for exams and permission to use a laptop for note-taking.

Another point is that students are not guaranteed services at college simply because they had a 504 plan or IEP in high school. To receive accommodations, the college must find the student eligible for services.

Hello Everyone—
We were all very happy to hear about the Governor’s announcement that the state moved to Phase 3
on September 11.  Similarly, EarlySteps will be releasing the details by which the phasing in of home visits will occur. The steps will include prioritization of families who may have refused or may not have been able to participate in services via teletherapy, updating needs via virtual team meetings to review IFSPs, limits to the number of home visits allowed per day, and updated telephone screening and
infection control procedures. The service model will continue to consist of a combination of home, child care, and teletherapy visits. Be looking for the new guidance to be shared by your regional coordinator prior to implementing any service delivery changes to ensure that the requirements are strictly followed
to minimize the risk of spread to children, families, and providers.
Related to Hurricane Laura--we are attempting to locate as many evacuated/relocated families as possible to assist with resources and determine their interest and ability in resuming services where they are now. Please contact FSCs if you locate a family who needs assistance. Also, regarding families
who evacuated out of state, they may continue receive services via teletherapy, but providers who are licensed must check with their respective licensing boards in those states to determine how that state’s licensing requirements apply to out of state service delivery.
 Thank you for your patience during the past few months of the pandemic in meeting the needs of children and families,
Emergency Preparedness For Children With Special Needs
A word from our Executive Director, Dr. Charles Michel!
Well, here we are. Our region has largely, though not entirely, escaped Hurricanes Laura, Marco, Sally and Beta. School has started with many of them offering either remote learning, in-person learning or a hybrid of these two approaches. We still can’t go to the movies or to most sporting events. Anything we CAN do requires a mask and social distancing…and, of course, the frequent washing of our hands!
Now don’t get me wrong. I’m not complaining in the least! It’s just that after 6 months of no restaurants, no live performances at the Saenger, no visits to our local movie theaters, etc., I am just missing some of those favorite activities. I’m not a sports fanatic so, to be quite honest, I wouldn’t have gone to any sporting events even if they would be possible for me to attend. But I sorely miss our family functions that we sometimes hosted in our home. We’d have up to 40 or 50 of our brothers and sisters, their spouses, their children and grandchildren for a meal. My wife and I both have large families, and her parents and mine have been gone for many years…so we embrace any opportunity for us all to get together. And, for now at least, this activity is no more.
So, how do you take this glass half empty and make it a glass half full? Well, I am trying to figure out what lessons I’ve learned from our experience for the past several months. Upon my reflection, I am satisfied that I have learned to do different things to amuse myself AND I have learned to do some of my old favorites a bit differently. Instead of having 40 or 50 family members over for one big family gathering, we have had a few much smaller gatherings with no more than 10 people in attendance. This allows us to stay connected with family while not significantly endangering anyone’s health. I’ve found a lot of new recipes and have tried to cook and eat several new foods. (Of course, back to the glass half empty concept…this one is responsible for what I call the “Pandemic Spread”, or my gain of about 12 pounds since March!) In lieu of the movies and the Saenger, we have discovered some really good movies and a few series on Netflix and Amazon Prime that have kept us entertained for hours at a time!
Schools are offering more options to their students in terms of HOW the students want to learn. My hope is that this new point of the continuum of educational services will remain an option long after the pandemic threat is gone! I also hope that the improvement in this approach will be continuous as it is not as effective now as it could be.
And parents are learning how to help their children to learn. Parents and schools have been forced to engage in a partnership that is healthy but, for the most part, not commonplace. My wish is for that to continue even after all students have returned to school to receive their instruction. A strong home/school partnership can be a major factor in student success. https://theeducationhub.org.nz/home-school-partnerships-what-the-research-says/
So, in the midst of all of the inconvenience and boredom, most of us have been forced to learn new ways of doing things…and that’s one of the good things that makes the glass half full!! As Andy Wooten said, “Try something different today. Don’t stay stuck, do better.”
Happy Autumn to everyone!