April 30, 2026
The Boost News
SPOTLIGHT: HCBS UNDER FIRE
The Trump administration, determined to devalue people with disabilities and their caregivers under the guise of Medicaid “fraud,” struck again.
On April 16, while testifying in front of the U.S. House Ways and Means Committee, Health Secretary Robert F. Kennedy Jr. targeted Medicaid-funded Home and Community-Based Services that pay family members to serve as caregivers. These services are designed to keep people with intellectual and developmental disabilities, including those with complex medical needs, at home, in their communities, and out of institutions.
“These are family members who are getting paid to do things that they used to do as family members for free,” Kennedy testified. “This is rife with fraud because we have no way at CMS to determine whether they actually perform that duty or not. We don’t know whether you drove your grandmother to a doctor’s office.”
Kennedy doesn’t know what he’s talking about. For one, he’s willfully ignoring the national caregiver crisis, and how many family members must leave jobs — and the income they provide — to take care of their loved ones. For families who take care of children with complex medical needs, their new jobs are harder than anything Kennedy can imagine. (Check out Photos Show 24/7 Role Parents Play Caring for Medically Fragile Children at Home, published by The Boost last year, and this Mother Jones report, which looks at the 744 hours of nursing and attendant care one 11-year-old boy in Oregon needs each month.)
RFK’s comments “didn’t just denigrate family caregivers, they denigrated the work of the professionals in our fields by suggesting that all home- and community-based services could just be done by family caregivers, and it should all be done for free,” Barbara Merrill, CEO of ANCOR, told NBC News. “It’s just shocking.” It also left community-based caregivers “gravely concerned” about the future of home care, she added.
More pertinent links:
What RFK Jr. said to Congress shows he doesn’t understand disability policy (ASAN)
STUDY: The New Face of Family Caregiving (American Society on Aging)
STUDY: Caregiving in the US 2025 (AARP)
Watch RFK Jr.’s testimony on YouTube.
SSI
The Trump Administration Aims to Penalize Disabled Adults Who Live With Their Families In more terrible news, the rule change would deduct the value of a disabled adult’s bedroom from their SSI allotment, even if the family members they live with qualify for food stamps. “This would mean slashing the benefits of some of the most low-income SSI recipients by up to a third or ending their support altogether.” (ProPublica)
OPINION: My son is a disabled adult. The Trump White House has him in its sights (MS Now)
MORE ON HCBS
CMS Unveils Proposed 2028 HCBS Quality Measure Set: What It Means For Home Care Providers The measures’ effects may be felt downstream and would vary from state to state. (Home Health Care News)
Potential national implications loom as judge sends New Hampshire Medicaid HCBS case to trial The lawsuit claims the state’s underinvestment in its Medicaid waiver program leaves recipients “at serious risk of unjustified institutionalization” by failing to ensure services are provided. (McKnights Senior Living)
EDUCATION
Education Secretary Says Department Still Working To Offload Special Ed Sec. Linda McMahon signaled that her agency still intends to offload programs under the Individuals with Disabilities Education Act and the Rehabilitation Act. (Disability Scoop/paywall)
As deadline looms, $289 million in federal education research funding may go unspent An advocacy group analysis highlighted that roughly 85% of the $77 million designated for special ed research remains unspent and there are no federal notices or documents, “as there usually would be,” detailing plans to launch grant competitions and spend it. (Hechinger Report)
HIGHER ED
Education Department finalizes rule tightening federal student lending The agency kept a contested definition of “professional” student that excludes fields like education and physical therapy from higher loan caps. (Higher Ed Dive)
AUTISM
RFK Jr.’s Unsupported Claims About Tylenol-Autism Study He Called ‘Garbage’ Following his April 16 testimony, RFK Jr., on the 17th, let loose this one. (FactCheck.org)
Kennedy’s US advisory board puts focus on ‘profound autism’, improved medical care Most of the substantive discussion during the meeting revolved around how to define profound autism. (Reuters)
New focus on autism fuels debate over splitting the spectrum (PBS)
Here’s what the autism spectrum really looks like (Scientific American)
FDA May Finally Make It Illegal to Shock Autistic Kids as Punishment The new rule, if finalized by the Trump administration, doesn’t prohibit all types of shock therapy. (Mother Jones)
Autism Misinformation Widespread On Social Media, Study Finds (Disability Scoop/paywall; find the study here)
TOOLKIT: Autism, HHS, and Public Health: Unpacking Robert F. Kennedy Jr.’s Year in Misinformation (ASAN)
STATE NEWS
Note: This starts with New York, where a majority of The Boost’s readership currently is based, and continues alphabetically by state.
The Autism Mom Who Turned Miami-Dade Into a Neuroinclusion Model The Florida Neuroinclusion Toolkit is for counties, cities, and public agencies looking to build neuroinclusive communities. (Miami’s Community Newspaper)
Federal agents, Minnesota investigators raid 5 Twin Cities autism centers as part of fraud probe (CBS News)
Troubled N.J. school district says it may lay off 162 teachers’ aides (NJ.com)
NC moves to rein in soaring autism therapy costs amid fraud concerns Families say ABA has been life-changing. But a surge in Medicaid spending — and questions about who’s collecting it — has been putting the therapy under scrutiny. (NC Health News)
For Texans with disabilities, voting can take weeks — or be out of reach For many voters with disabilities, the biggest barriers are not the ballot itself, but the systems people rely on to navigate the process on time, including gaps in home care, transportation and access to assistance. (Texas Public Radio)
REPORTS
Caregivers with Disabilities: An Overlooked & Under-supported Caregiving Population (Brandeis)
GOOD IDEAS
Most fashion mannequins are about a size 2. The Met Gala exhibit is making room for diverse bodies (AP)