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
101-series
What happens to disabled young adults after high school? Many families don’t know what to expect when school ends. The Individuals with Disabilities Education Act (IDEA) makes education an entitlement for students with disabilities, ensuring them a place in their communities. However, families quickly learn as high school draws
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
(Editor's note: edited and republished on 5/13/2025) In 1981, President Ronald Reagan learned about a 3-year-old girl with complex medical needs and disabilities named Katie, who was forced to live in an institution because federal rules governing Medicaid prevented her from getting the care she needed
pandemic
September 24th felt like an eternity away. September 24th was my daughter Myka’s 12th birthday. We began counting down to her big day the minute the CDC, last May, approved Covid-19 vaccines for kids 12 and up. Myka, the youngest of my three kids, is the only unvaccinated person
reflections
I’ve been thinking about trauma lately. Our children and our families have been through so much over the last year and a half--not only the pandemic itself, but the insurrection at the U.S. Capitol; the natural disasters caused by climate change; the U.S. withdrawal from Afghanistan; the
pandemic
Joyful, silly, and smart are words my husband and I would use to describe our six-year-old son. He is a child who knows no stranger, genuinely loves everyone he comes across, and is obsessed with cars. The world is his oyster, and he loves being an active participant in life!
reflections
I still remember my first event with Little Lobbyists, a family-led group advocating for kids with complex medical needs and disabilities. My son Rob wasn’t with me that day--he was enjoying one of his last precious days of public school, which he loved. I’d gone to Capitol Hill
reflections
On Thursday, June 17, 2021, the U.S. Supreme Court upheld the Affordable Care Act (ACA), and I breathed a huge sigh of relief. I've lost count of how many times I have metaphorically held my breath while waiting to find out if the ACA, which ensures my
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.
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
This morning’s ruling by the Supreme Court upholding the Affordable Care Act is a victory for our children with complex medical needs and disabilities and for all Americans. The Affordable Care Act (ACA) has saved and improved the lives of our children with complex medical needs and disabilities with