medicaid
Ian's Story: How the Medicaid Health Insurance Premium Payment Program Saves Lives
The Medicaid Health Insurance Premium Payment Program backs up our private insurance to keep Ian safe and thriving.
medicaid
trump-administration
What Trump's First 100 Days Mean for Medically Complex Children and Their Families
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.
medicaid
#CareCantWait: Reflections from the Bus Tour (By Elena Hung)
On August 26, 2024, the Care Can’t Wait bus tour kicked off its first event in Chicago, Illinois. "Care on Tour" would wend its way through nine cities in seven states. It was part of an ongoing national campaign by the Care Coalition that highlights the importance
family-advocacy
We Belong: Why Community Integration Matters
In July, the Care Can’t Wait Coalition sponsored several events on community integration in Washington, DC, including a panel at the White House, a Congressional briefing, and a Summit at the Martin Luther King, Jr. Memorial Library. Community integration is at the heart of disability rights, and is supported
medicaid
Know Your Rights: The Community Integration Mandate (by Jeneva Stone)
Did you know that the Civil Rights Act of 1964 does not ensure civil rights for people with disabilities? The Act “outlaws discrimination based on race, color, religion, sex and national origin.” The Civil Rights Act does not outlaw discrimination based on disability. So how then are people with disabilities
101-series
25 Years of Olmstead Rights: James & Jenny McLelland’s Story
Today, June 22, 2024, marks the 25th anniversary of the U.S. Supreme Court’s landmark case, Olmstead vs. L.C., which affirms the right of disabled people to use their state Medicaid benefits to live in their communities, rather than in institutions. The suit was brought by Lois Curtis
federal-issues
Historic News: Prohibiting Disability Discrimination in Federal Programs! (by Jeneva Stone)
“By removing barriers to health care and social services, this rule advances justice for people with disabilities who have for too long been subject to discrimination. No diagnosis should be missed because of an inaccessible mammogram, no patient should be left with questions about test results due to inaccessible websites,
101-series
What Is “Section 504”? Disability Rights 101 (by Jeneva Stone)
(Editor's note: edited and republished on 5/13/2025) This week marks the 50th anniversary of the Rehabilitation Act of 1973, which opened doors to jobs, education, independent living, and much more for people with disabilities. The Act also established standards for accessible communication and information technology. The
101-series
The ENFit Transition: Advice and Information for Families (by Jeneva Stone)
My son Rob is a 25-year-old artist and activist. He’s survived and thrived in his community because he has had access to enteral (or “tube”) feeding for all of his nutrition, hydration, and medication needs since the age of two. Tube feeding isn’t shameful; it’s just another
family-advocacy
When No One Consults the Disability Community: The Unfit Transition to ENFit (by Sandra Joy Stein)
“Hey there”, my email to our enteral supplier began in as friendly a tone as I could muster, “We received my son’s tube-feeding supplies and after his home health aide went to hang one of the bags, she realized that the wrong feeding bags were sent. We usually get
federal-issues
Spelling It Out: The ADA and the Right to Community (by Bob Williams)
As far back as I can remember, I have always found ways to express myself that others can understand. It is why I escaped the discrimination others still endure. I have significant motoric, and speech, disabilities due to cerebral palsy. On the wall of my office hangs a piece of
reflections
What Health Care Means to Me (by Jeneva Stone)
As the mother of a young man with complex medical needs and disabilities, health care means peace of mind: knowing that Rob’s medical and adaptive needs will be met. That Rob can take advantage of technology and medical advances, such as his augmentative and alternative communication (AAC) device. Rob’