Advocacy, within my capacity, is so important to me. Telling my family’s story helps people understand the importance of an equitable and just care system.
Trump's first hundred days are threatening medical research; critical programs children and families rely upon for survival; and continued access to medical supplies, equipment, and medications.
Judy Heumann has been called the mother of the disability rights movement, and her life reflected that. She was kind, warm, encouraging to Little Lobbyists families, and, especially to our children.
HCBS, including professional caregiving like skilled home nursing and direct support, help our kids stay safe at home and school and allow us – their parents and caregivers – to go to work, care for our other children, and provide for our families.
Together we represent millions of people with disabilities, patients, and people with chronic illnesses across the United States, and we are extremely concerned by your comments.
Even in serious situations, she brought joy with her — dressing you up in the most adorable tiny pink Doc Martens, trick-or-treating in the Senate, celebrating victories small and large. She kept in touch. She always showed up.
Now imagine having a child with this condition during this global pandemic and you can maybe emphasize with a fraction of the terror we feel daily in making basic decisions like, should my son go play outside with friends?
A large investment is essential for building a sustainable HCBS infrastructure that can begin to address the magnitude of need in our communities, both increasing access to Medicaid HCBS and addressing the direct care workforce crisis.
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.
Little Lobbyists, a family led group advocating for children with complex medical needs and disabilities, has joined 18 other national disability rights organizations in filing an amicus brief in the Supreme Court defending the Affordable Care Act (ACA).
As Congress moves to pass legislation to ease the strain on families across the country, it is critical that they also move to protect and support the rights and safety of people with disabilities, including children with complex medical needs and disabilities.
