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Special Needs > Cystic Fibrosis
The CF Transition to Adult Care: How to Prepare Your Teen for Independent Health Management
Your teen's CF care has been coordinated...care has been coordinated by the same...to adult CF care is a documented...have to derail care. Parents who...extend pediatric care to 21 if the...directly with the care team. What...in Adult CF Care. Pediatric...Pediatric CF care is family-centered....schedules, and coordinate with the clinic....clinic. Adult CF care assumes the...manages their own care. Your presence...
Medical > Pediatrics
When Your Pediatrician Isn't Enough: Building a Medical Home for Complex Needs
...needs, it's where care breaks down. A medical...not just primary care, but true coordination...medical home as care that's accessible,...family-centered, coordinated, comprehensive,...child's entire care plan. A medical...specialists. It coordinates them. Your child's...medical complexity, care coordination isn't...those who need care from three or more...
Global Insights > Healthcare
Navigating Healthcare for Children with Special Needs: Medical Homes, Care Coordination, and Insurance Strategies
...become the central coordinator by default, carrying...on the door. It's a care model, an organizing...Pediatrics defines it as care that is accessible,...comprehensive, family-centered, coordinated, compassionate, and...child has a primary care provider who knows...maintains the overall care plan, and makes sure...explicitly designed to coordinate across the...
Special Needs > Spina Bifida
Transition to Adult Care in Spina Bifida: Why Planning Starts at 14 Not 18
...history, manages their shunt, coordinates bladder and bowel care, tracks...coordinates bladder and bowel care, tracks orthopedic concerns....2023 Spina Bifida Clinical Care Guidelines say you should have...four-year gap creates preventable care crises. Transition planning...about them taking over their care immediately. It's about moving...
Parenting > Self-Care
When Guilt Takes Over: A Parent's Guide to Processing the Hard Emotions
...paperwork to file, therapy schedules to coordinate. What are you doing sitting here? This...event. It's heavier. It doesn't let go. Caregiver guilt in special needs parenting...it should be, and the reality that caregiving doesn't stop at bedtime. Understanding...have. You fix it, apologize, move on. Caregiver guilt doesn't work that way. It's...
Medical > Psychiatry
Medication or Therapy? How to Decide What Your Special Needs Child Needs First
...It's about who can assess what's happening and coordinate care if multiple approaches are needed. Here's...who can assess what's happening and coordinate care if multiple approaches are needed. Here's how to...what each specialist does, and what collaborative care looks like when it's working. What Psychiatrists...
Career > Accommodations
Assistive Technology at Work: Finding and Funding the Tools You Need
...assistive technology as part of an Individualized Plan for Employment. A VR counselor can arrange AT evaluations, cover approved equipment costs, and coordinate training. This pathway is open to job seekers and employed workers whose employers aren't providing...
Assistive Tech > Virtual Assistants
New TSA Helpline for Special Needs Travelers
...toll free hotline called TSA Cares. Travelers with special medical...personally speak to the passenger or caregiver, or provide security checkpoint...of flight time so that TSA Cares will be able to coordinate...that TSA Cares will be able to coordinate further support with a TSA...can be found here. The TSA Cares helpline can by reached by...
Research > Clinical Trials
The Questions Every Parent Should Ask Before Enrolling in a Clinical Trial
You've found a trial. The eligibility criteria fit. The research coordinator has called. Now you're looking at a 20-page informed consent document written...and Risk. What are the specific risks of this trial compared to standard care? The consent form will list potential side effects. What you need to know...
Health > Treatment
Managing Multiple Medications for Children with Medical Complexity: A Parent's Safety Guide
...five or more medications, you are not just a parent. You are the central coordinator for a care team that often doesn't communicate with itself. The neurologist...medications, you are not just a parent. You are the central coordinator for a care team that often doesn't communicate with itself. The neurologist prescribes...
Therapies > Occupational
Why Your Child's Handwriting Struggles May Be an OT Issue (And What to Do About It)
...hand. From there, the fingers execute fine motor movements with precision. Visual-motor integration allows the child to translate what they see into coordinated hand movements. Proprioception helps them gauge how much pressure to apply. Sensory processing determines whether the pencil feels comfortable or...
Parenting > Support Groups
The Complete Guide to Finding Support as a Special Needs Parent
...outcomes, and better navigation of services. And most parents have never heard of them. Here's how they work: You contact your state's program, coordinated nationally through Parent to Parent USA. You're matched one-to-one with a trained parent whose child has a similar diagnosis, age, or set of challenges....