caregivers
Kelley Coleman is the mom to two amazing boys, one of whom has multiple disabilities (including an as-yet-undiagnosed genetic syndrome, cerebral palsy, autism, CVI, epilepsy, and more). Her book Everything No One Tells You About Parenting a Disabled Child: Your Guide to the Essential Systems, Services, and Supports stems from
journey-with-jeneva
Our children with complex medical needs and disabilities will grow up to become adults with disabilities, so it’s important that we, as Little Lobbyists families, listen to disabled adults. Those of us who are parents may not have experienced life with a disability until our child did—who better
101-series
Rob Stone is an active member of Little Lobbyists. Rob’s goals upon leaving high school were to become a health care and disability rights advocate, and an artist with his own art website. Rob has a rare disease, dystonia 16. Due its complications, Rob uses a wheelchair to get
state-advocates
Self-directed or consumer-directed services are an increasingly popular option among state Home and Community-Based Services (HCBS) waivers. The Self-Directed Advocacy Network of Maryland, Inc., (SDAN) calls self-direction, “Living the life you want.” Jeneva interviewed Alicia Wopat, President of SDAN, to learn more about the group’s advocacy. Tell me about
journey-with-jeneva
Share the Journey with Jeneva: Sherry Pickett Gets to the “Heart” of Advocacy Sherry Pickett has a Master’s Degree in Education, specializing in mental health. She’s worked in the mental health field for the last 18 years, providing Case Management Services and Therapy/Parenting Classes. Now her career
hcbs
Given the Biden Administration’s commitment to Home and Community-Based Services (HCBS) and ending Medicaid waitlists, our country will need more and better-trained direct care workers. These home care workers will be vital to the ability of our medically complex and disabled children to survive and thrive in their communities.
journey-with-jeneva
Jeneva Stone has the honor of interviewing Angela N. Weddle, a professional visual artist who is autistic with cerebral palsy and congenital right hemisphere brain damage. Weddle is a neurological anomaly and savant, who is not supposed to have any artistic ability but always has. Weddle has mentored and taught
journey-with-jeneva
Maya Brown-Zimmerman is an adult with a rare genetic disorder, parenting four kids with medical needs themselves. When she’s not handling school stuff, driving people to doctor and therapy appointments, taking classes herself (working towards a goal of a Masters in Genetic Counseling), and doing advocacy work within the
hcbs
Ande Kolp is the Executive Director of The Arc Maryland. Over three decades, Ande has supported people with intellectual and developmental disabilities and their families in various positions within Maryland and Iowa. She holds a Bachelor’s Degree in Music Therapy from the University of Iowa and a Master’s
journey-with-jeneva
Nathan Spoon is an autistic poet with learning disabilities whose poems and essays appear or are forthcoming in American Poetry Review, Columbia Journal, The Cortland Review, Gulf Coast, Harvard Divinity Bulletin, Poetry, and the anthologies How to Love the World: Poems of Gratitude and Hope, and Sonnets from the American:
journey-with-jeneva
Bio: After graduating from Elon University with a degree in Corporate Communications, Lauren had a 12-year career in the electronic healthcare industry. Lauren and her family have volunteered, advocated, and fundraised for TSC and Epilepsy. In 2017, Lauren became Chair for the TS Alliance Community Chapter in Maryland and began
journey-with-jeneva
Amy Silverman is a writer, editor and teacher. Her work has appeared on the radio shows This American Life and Here & Now, and in local and national publications. This year she worked with ProPublica's Local Reporting Network on an investigation into services for people with intellectual and