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.
What Does Advocacy Mean to You?
These last weeks, I’ve been reflecting on my own plunge into state and federal advocacy, which began in late 2018, the result of my son Rob’s transition from high school to adult life.
Using Our Words: Being a Better Disability Ally
So let’s talk about a few terms in use by nondisabled people that are not preferred! These terms can be infantilizing, misleading, or derogatory. The best way to unlearn them is to understand why they are harmful and what we can say instead.
Children with Complex Medical Needs and Disabilities Must be Prioritized for COVID-19 Vaccination
It is urgent that we prioritize these children because they have already been disproportionately negatively impacted by the pandemic through social isolation, lack of access to equal and appropriate education, family economic factors, morbidity and mortality rates.
Independence Can’t Wait: An Interview with Ande Kolp about Home & Community-Based Services
Growing up in Iowa, I was fortunate to attend a school that was highly inclusive. I’m fairly sure that was not typical back in the 70s.
Poetry & Autistic Advocacy: An Interview with Nathan Spoon
I developed a love for poetry in my late teens. My parents were supportive of these interests and, even with our limited family income, I had my own books (which I kept stacked on my bed, beside my pillow!) and access to art supplies.
Share the Journey with Jeneva: Lauren Shillinger on Epilepsy Advocacy
Sharing our journey spreads awareness while helping other families connect and share resources. Our family loves vacations to the beach and trips to amusement parks like Hershey and Disney.
Little Lobbyists Remember Those Lost on Disability Day of Mourning
All too often, an unforgivable and criminal pattern plays out when a parent or caregiver murders their disabled child or family member.
Rescuing Our Families: Home and Community-Based Services in COVID Relief (by Jeneva Stone)
HCBS COVID relief includes additional funding for HCBS to reduce waiting lists, and crucial support for home health care workers and direct support professionals.
Protect Our Kids: Vaccinate Family Caregivers (by Jeneva Stone)
Our struggle made clear the reality that states have no contingency plans for medically complex and disabled dependents, should the worst happen during this pandemic.
Sharing the Journey with Jeneva: Amy Silverman & Sophie Stern on Journalism & Disability Representation
We are still super early in the discussions around plain language translation. It's tricky – you really you really can't automate it, even the plain language translations need to be fact checked and lawyered.
Sharing the Journey with Jeneva: Loving Anian with Meeka Caldwell
When Anian was younger and first starting school, I looked for books about Down Syndrome to read to his class. I noticed they were difficult to find and impossible to find with a Black child with Down Syndrome.
Open Enrollment: Why the ACA Matters (by Jeneva Stone)
On December 10, the U.S. Supreme Court heard oral arguments in the latest effort to do away with this crucial piece of legislation, yet court-watchers believe the justices signaled a willingness to let the law stand. We can breathe a small sigh of relief, for the moment.