Small Voices, BIG Impact: Little Lobbyists Takes on Harrisburg!
Cole's mom writes about the electric mood at the Harrisburg, PA, stop on the "Sick of It! Fix Health Care Now" bus tour.
When No One Consults the Disability Community: The Unfit Transition to ENFit
The response came quickly, informing me that the manufacturer is no longer making the INF0500-A, the product we have used for over a decade when my son had surgery to place a gastrostomy tube and we learned a whole new vocabulary.
Covid Isn’t Over: Disabled Lives Are Still at Stake
As I’ve reflected on this experience, I am grateful for vaccines and effective treatments for Covid. But it is also clear that hospitals are simply OVER Covid and they are OVER dealing with disabled people who have it.
When Your Life Depends on Your Zipcode (By Rob & Jeneva Stone)
Rob has a rare disease, dystonia 16. Due its complications, Rob uses a wheelchair to get around, uses a tracheostomy to assist his breathing, takes his food through a gastrostomy/jejunal tube, and needs a lot of assistance to use his arms or hands.
Remembering Julie Beckett: Discovering Our Strength
For three long years, Julie fought the state and federal governments, seeking a way to bring Katie home, where she would be surrounded by love and where she would ultimately thrive.
Care Can't Wait: HCBS Now! (by Jamie Davis Smith & Rob Stone)
Home and Community-Based Services give me control of my own life. I can live where I want. My home care staff help me do the things I want to do. Like go to art classes and run my own art website.
End HCBS Waitlists: Pass the Better Care Better Jobs Act Now! (by Lisa Wesel)
I’m tired of begging for crumbs. That’s what people with disabilities and their families do – we beg for scraps of funding from our state and federal governments.
Pass the Better Care Better Jobs Act--We Need Home and Community-Based Services Now! (by Jeneva Stone)
I wanted a good life for Rob: to live with dignity and respect in his community, to attend the public schools and to participate in the same activities that other kids did.
Masks Keep Travel and Communities Safe and Accessible (by Katie Harmon)
Our family embraces everything about each of my kids–including disability, which we view as just another part of life and parenthood!
Making the Case for Masking in Schools Is Difficult & Necessary (by Peter Witzler & Keir Bickerstaffe)
As the great Congressman John Lewis said, "Do not get lost in a sea of despair. Be hopeful, be optimistic. Our struggle is not the struggle of a day, a week, a month, or a year, it is the struggle of a lifetime. Never, ever be afraid to make some noise and get in good trouble, necessary trouble."
Disability Day of Mourning
I am here today to honor and remember those in our community who have died at the hands of their parents or caregivers.
Share the Journey with Jeneva: Self-Direction & the Good Life with Alicia and Al Wopat
SDAN has become a voice for participants and their families to ensure that participant choice and control is the mantra in Maryland, and that paid family support is respected and continues to be an option.
Living the Life You Want: Self-Directed Services 101
Because institutions and nursing homes haven’t gone away, and traditional providers are often struggling to make their own programs more flexible and community-based, there are lots of voices clamoring to be heard in state government deliberations.