Emily Lukens She/Her
Disability & Family Advocate | Special Education, Medical Complexity & Parent Support
Why families come to me
Families come to me for compassionate, judgment-free support from someone who understands the challenges of raising a child with complex medical needs and disabilities. I help parents feel less alone as they navigate special education, therapies, medical appointments, adaptive equipment, accessibility, and the everyday realities of caregiving. My approach focuses on listening, sharing practical resources, encouraging meaningful inclusion, and helping families feel more informed and confident when advocating for their children. I believe every child deserves to be seen, heard, included, and given opportunities to reach their fullest potential, regardless of their abilities.
Lived experienceMy journey into disability advocacy began when my oldest daughter, Mallory, experienced a hypoxic-ischemic brain injury (HIE) at birth. What followed was a three-week NICU stay and a life we could never have fully prepared ourselves for. Today, Mallory lives with cerebral palsy, epilepsy, significant developmental delays, and complex medical needs. She is nonverbal, uses a feeding tube, relies on adaptive equipment for mobility, and is learning to communicate through eye-gaze assistive technology. As her mother, I have spent years navigating specialists, hospitalizations, therapies, medical equipment, insurance, home nursing, and educational services. I understand the emotional and logistical challenges of coordinating care while also trying to give your child every opportunity to thrive. Alongside my experiences as a parent, I work as an Instructional Assistant in a career and technical education setting and am pursuing my Master's degree in Educational Leadership. My background in education has strengthened my passion for accessibility, inclusion, individualized learning, and ensuring students with disabilities have meaningful opportunities to participate. Through Mal's Journey, I share our family's experiences to raise awareness about disabilities, medical complexity, alternative communication, and the importance of inclusion. My goal as an advocate is simple: to help other families feel supported, informed, and empowered. I know firsthand how overwhelming this journey can be, and I believe no parent should have to navigate it alone.
What I help with
Credentials and training
- Former aide or teacher
- Lived experience as a parent / caregiver
SupportNow reviewed documentation for these credentials.
Where I work
PA remote
Fees and availability
Free.
Track record
Successfully advocated for access to specialized therapies, adaptive equipment, assistive communication technology, and essential medical support for my daughter with complex disabilities.
