hcbs
My daughter Colby has turquoise braces and a dimple in one cheek. Her blue eyes are turning green, just like mine did as a teenager. She wears her luxuriant brown hair pulled back to frame her differently shaped ears. The photographer Mary Ellen Mark called her ears, “her signature.” She
hcbs
The Better Jobs Better Care Act would provide desperately needed funding for Home and Community-Based Services (HCBS) for thousands of disabled children and adults nationwide. Through Medicaid waivers, HCBS provides skilled nursing services, direct support professionals, and equipment and supplies not covered by private insurers to people with disabilities so
hcbs
Dear Senator Warner, There is a particular feeling, a whole set of sensations, ranging from shakes, sweats, feeling of rawness inside my body, aching bones, swollen lymph nodes under my chin and arms, nausea and weak/painful muscles that I get when my body is dumping thousands of white blood
family-advocacy
On June 17, 2021, the U.S. Supreme Court issued a decision on a group of cases from several states that challenged the constitutionality of the Affordable Care Act (ACA). The Supreme Court ruled 7-2 that the plaintiffs lacked standing to challenge the health care law. This was the third
family-advocacy
“Fortunately, your daughter will still be eligible for a kidney transplant even though she has developmental disabilities,” the doctor said. I sat there stunned. It had never occurred to me that my daughter’s intellectual disabilities could be a reason to deny her the lifesaving kidney transplant she needed. Sierra
family-advocacy
Abby had a history of seizures, but this one was very different. The snow had been falling steadily outside the window as another winter storm moved in over our rural town in western Pennsylvania. My husband, a pilot, was away on a business trip, and I was just getting my
family-advocacy
We must end police violence against Black Americans, and against all people of color, and people with disabilities. The U.S. House of Representatives recently passed the George Floyd Justice in Policing Bill of 2021, which, if enacted, would ban chokeholds and end qualified immunity for police officers. Police violence
family-advocacy
Like all of us, Laura Hatcher, our Director of Design & Communications, and Jeneva Stone, our Blog Manager, have had to figure out how to make these December holidays as jolly and bright as possible, given the challenges of the present moment. We had some ideas we wanted to share,
keeping-all-students-safe-act
My son Sam is a superstar. He’s outgoing, athletic, loves basketball, sings country music, is learning how to play guitar, and he’s enthusiastic about comedy, conversation, and history. In 2009, I learned Sam was autistic. With a background in social work and child welfare, I imagined I was
family-advocacy
We were in the middle of my son’s homebound Webex class when a sound stimulus triggered a seizure. Vic’s teacher could only watch as I suctioned him, pumped up his supplemental oxygen to four liters, leaned him back, and let him fall asleep. That's how a
family-advocacy
My daughter Claire is 14 and loves ice cream, being in water, and has spent much of the pandemic snuggled on the couch with her three younger siblings. Claire spent the first few weeks of her life in the Neonatal Intensive Care Unit receiving the best medical care available. There
family-advocacy
Let me tell you about my son: His name is Aire, which is Spanish for air. He loves soccer, piano, acting, drawing, biking, silly jokes, and math. Like more than 100 million others in the U.S., Aire has pre-existing medical conditions—including autoimmune and adrenal disease, severe allergies, and