PUBLIC TESTIMONY
Testimony by Perry Bennett, Parent of Children with Special Medical Needs
4:59:25
ยท
4 min
Perry Bennett, a parent of three children, two with glycogen storage disease (GSD), testified about the challenges of obtaining necessary nursing services for his children in school. He detailed the struggles with the Department of Education (DOE) in securing and funding appropriate nursing care, particularly for his 7-year-old son.
- Bennett highlighted issues such as the DOE's failure to provide qualified nurses, delays in nurse placement, and problems with payment for privately secured nursing services.
- He emphasized the emotional toll of constantly fighting the system, including feeling gaslit and repeatedly having to justify his children's medical needs.
- Bennett called for better acknowledgment of nursing needs, more efficient nurse placement, and consistent funding for nursing services in schools.
Perry Bennett
4:59:25
Hi.
4:59:26
Looks like I'm the first to bring up the nursing issue.
4:59:29
My name is Perry Bennett.
4:59:31
Thank you for leading this, and thank you everybody for still being here.
4:59:35
I'm here on behalf of my family and others falling through the cracks, those that are balancing medical needs and appropriate and safe school support.
4:59:44
God blessed me with 3 awesome children, 2 of them with glycogen storage disease.
4:59:49
GSD is an intense lifelong rare disease where the liver does not store any sugar for future use.
4:59:56
The boys require a feeding tube feed every 3 hours, follow a very specific diet, require glucose and ketone checks, and a constant supervision.
5:00:06
Seeing how brutal the fight to meet their needs in school is, I'm focused on fighting for 1 child at a time.
5:00:12
Let's talk about my younger son, Swirley.
5:00:15
But let's not assume my older son, Svi, had smooth sailing.
5:00:19
He didn't.
5:00:21
Srili attends a private school at my expense and has an ISP that appropriately recommends a nurse, which in itself was a brutal fight, a nurse, so that he can safely attend school just like his friends.
5:00:34
The DOE has never provided a qualified nurse or any nurse for that matter in time for the school year or even midway in.
5:00:43
Yes.
5:00:43
The June 1st letter was sent before June 1st.
5:00:46
Yes.
5:00:46
ARIS was filed as well.
5:00:49
And yes.
5:00:49
It is also double the 60 day limit without anything being solved.
5:00:53
And 60 days is not expedited.
5:00:57
My nurse that I found after the DOE failed to either recommend a nurse on his IESP or provide a nurse once it was mandated, not 1, not 2, but 3 years in a row, is still owed more than 5 months of pay for last school year.
5:01:16
She also has not been paid a dime for this year.
5:01:19
And whatever was paid was a long, grueling, and very inconsistent process.
5:01:26
Safety and payment to be safe, appropriate, and free.
5:01:31
Is that too much to ask for?
5:01:33
My son is only 7, and this is the 4th consecutive year we're fighting and the 3rd hearing we're facing.
5:01:41
I've been fighting the system more than half of his life.
5:01:45
We've been to 29 doctors across 8 states and have had dozens of emergencies, hospitalizations, heartbreaks, miracles, and way too many absolutely horrific DOE interactions in between.
5:02:02
The hardest part of having children with a severe disease requiring constant treatment to keep them alive is constantly fighting with the DOE.
5:02:12
Everything's a fight.
5:02:14
More than the financial aspect, it's being repeatedly questioned then denied, feeling gaslit, resubmitting constant paperwork that lead to 0 implementation, watching critical services remain unfulfilled, revisiting his incurable medical baggage every single year all over again, going through a non systematic system, being thrown from one person and department to the next, and being made to feel like we're doing something wrong simply by asking for a safe school experience.
5:02:48
Because these are deeply painful, deliberate actions with no accountability and massive injustices to all of us.
5:02:57
To conclude, we're fighting to acknowledge the need for a nurse, fighting to fill the nurse, and fighting to fund the nurse.
5:03:05
Thank god my boys are alive and well.
5:03:08
My faith in this broken system, dead.
5:03:12
Payment for nursing shouldn't be a battle.
5:03:15
My children's critical needs should not be ignored.
5:03:18
No one's should.
5:03:20
Medical recommendations should not be dismissed.
5:03:23
And we should not have to fight so hard to keep our children safe at school, and definitely not with the very entity that's supposed to help us, or should I say obligated to help us.
5:03:35
God willing, chair Joseph, I hope to be back shortly, and thank you for being the catalyst to great change.
5:03:41
Thank you.