family-advocacy
Little Lobbyists honors the passing of an advocate who changed our children’s lives: Julie Beckett, the mother of Katie Beckett, for whom a crucial Medicaid waiver is named. Julie and Katie Beckett became advocates for people with disabilities because they wanted justice and a good life for Katie and
hcbs
On May 5, 2022, Little Lobbyists were part of a Home and Community-Based Services (HCBS) rally on the National Mall along with the Service Employees International Union (SEIU) to urge Congress to pass the Better Care Better Jobs Act (BCBJA). The BCBJA would provide badly needed funds to HCBS programs,
101-series
In 1998, when my son Rob became disabled at the age of one, I knew nothing about disability services or advocacy or rights. I just knew that I wanted Rob to live at home with us, where any child belongs. Rob was a busy toddler who loved going to the
hcbs
Renzo is 38 and living what some might call an enviable life. Entering his home, you’d quickly realize his passion for the guitar; several are displayed on his wall. You’d also learn, from the memorabilia and the books on his shelves, that he has a thing for the
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
hcbs
Danny loved to tease me. I was his younger brother by four minutes, a fact he never let me forget. If you asked him, “Danny, who’s ugly?,” without fail he’d yell “I-an!”-- his version of my name. When I sang to him, he heckled me with a
hcbs
In the spring of 2010, I headed to the zoo for my son Daniel’s annual school field trip. I loved spending the day with other parents of children with disabilities. The comradery fed my soul. This was the last trip of his elementary school years in our home state
hcbs
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 at home. President Reagan knew this was wrong, so he created
carecantwait
Dear Senator Sinema, My daughter, Taryn, is 16. She loves to go camping, she loves her family, and she gives great hugs. She was also born with very complex medical needs, as well as cognitive and physical disabilities. You may remember meeting Taryn and me last March when we had
family-advocacy
My son’s night nurse just told me she’s leaving home health care. Through tears. She cried as she told me how much she loves us all and how hard she tried to make this work. She cried as she told me that the health insurance she is offered
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