News
The TIME article argues that proposed GOP healthcare cuts and the "One Big Beautiful Bill Act" will exacerbate an invisible crisis by forcing more children into caregiving roles. Written by Lisa McCarty, who shares her own experience as a childhood caregiver, the piece highlights that an estimated 5.4 million youth in the U.S. already care for ill or disabled family members—a burden that leads to higher rates of depression, anxiety, and long-term mental health struggles. As Medicaid reductions threaten to strip coverage from millions, including those relying on Home Care Based Services, the author warns that the lack of formal support systems will leave even more children to perform unpaid, essential work that carries a heavy emotional and financial toll into adulthood.
NBC NEWS: RFK Jr. draws backlash for ripping Medicaid programs that pay people to care for relatives
By SD Network, 2026-04-24
Health and Human Services Secretary Robert F. Kennedy Jr. is facing intense backlash from disability rights advocates after testifying before the House Ways and Means Committee that Medicaid home-care programs are "rife with fraud." Kennedy specifically criticized programs that pay family members to care for elderly or disabled relatives, suggesting they are being compensated for tasks like grocery shopping or driving to appointments that should be done for free. Advocates and family caregivers have called these remarks "insulting" and "dismissive," arguing that the work often involves managing complex medical needs—such as ventilators and feeding tubes—and serves as a vital, cost-effective alternative to institutionalization. The controversy comes amid rising concerns over potential federal Medicaid cuts and a chronic shortage of professional home-care workers.
Self-direction is one of the most empowering programs in disability services — and one of the least talked about. Get Fired Up is a new podcast hosted by Cindy and Jamie from Community Horizons, a support broker agency in Wisconsin that helps people with disabilities hire and manage their own caregivers. New episodes drop every Friday.
AMERICAN ASSOCIATION ON HEALTH AND DISABILTY: Participation Open to All: Disability Experience Study
By SD Network, 2026-04-21
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The U.S. Department of Justice has issued an interim final rule delaying the implementation of new ADA Title II web accessibility standards by at least one year. Originally finalized in 2024 to mandate technical standards for state and local government websites and apps, the compliance deadline for large entities has been moved to April 26, 2027, while smaller jurisdictions now have until April 26, 2028. The administration cited the need for local governments to better plan and budget for these updates following pressure from school districts and city leaders; however, disability advocates argue that this delay further excludes individuals with disabilities from essential online public services and information.
NATIONAL CORE INDICATORS: Care that Counts: Measuring the quality of paid family caregiving among home and community-based services users
By SD Network, 2026-04-17
A new study found that people whose primary caregiver is a paid family member or friend report significantly better outcomes than those supported by agency-employed staff — a finding with direct implications for self-direction programs. Compared to those with paid non-family staff as their main helper, those with a paid family caregiver were 2.3 times more likely to always get enough help with activities of daily living (ADLs), 1.5 times more likely to say their services and supports always meet their needs and goals, and 1.4 times more likely to participate in activities with others as much as they want. People with paid family caregivers also reported the lowest caregiver turnover rates — a key driver of poor outcomes. The report recommends expanding paid family caregiving options while continuing to invest in the broader direct care workforce.
The policy brief Recognizing Care as a Public Good by Demos argues that the United States must shift from viewing care as a private, individual burden to a shared public infrastructure to foster a more equitable economy. It highlights how the current system disproportionately harms women and people of color through low wages for care workers and staggering costs for families, rooted in a history of systemic racial and gender inequity. By investing public funds into early childhood education, disability support, and elder care, the brief posits that the nation can ensure high-quality care as a universal right, improve job standards for essential workers, and fulfill a vision of economic liberation and dignity for all citizens.
HEALTH AFFAIRS: Safeguarding Health For People With Intellectual And Developmental Disabilities: Absent Federal Leadership, Others Must Step Up
By SD Network, 2026-04-17
The article Safeguarding Health For People With Intellectual And Developmental Disabilities argues that recent federal policy shifts have dismantled essential health infrastructure and funding for the 17 million Americans living with intellectual and developmental disabilities (IDD). Because these individuals face higher risks of chronic conditions and preventable mortality, the authors call for a coalition of private-sector organizations, states, and clinical societies to step into the leadership void. This non-federal response must focus on providing trustworthy health guidelines, stewarding national data ethically, and promoting a social model of disability that prioritizes community integration and self-determination. Ultimately, the authors emphasize that people with IDD must play a central role in leading these efforts to ensure health equity and combat growing misinformation.
MCKNIGHT: MACPAC: CMS should require states to report hourly wages to HCBS workers
By SD Network, 2026-04-17
In its March 2026 annual report to Congress, the Medicaid and CHIP Payment and Access Commission (MACPAC) recommended that the Centers for Medicare & Medicaid Services (CMS) require states to report hourly wages for home- and community-based services (HCBS) workers. This proposal aims to address critical data gaps that currently hinder states from setting effective reimbursement rates, which have contributed to high turnover rates of 40–60% and significant staffing shortages. By standardizing wage data for roles such as personal care and home health aides, MACPAC intends to provide a more accurate foundation for rate-setting that promotes workforce stability and improves access to care for the 2.5 million people relying on these Medicaid-funded services.
WISCONSIN INDEPENDENT: Millions may lose Medicaid coverage because of Trump budget law
By SD Network, 2026-04-17
A new report from the Urban Institute warns that between 4.9 and 10.1 million Americans could lose Medicaid coverage by 2028 due to the One Big Beautiful Bill Act, a budget law signed by President Trump in July 2025. The legislation introduces strict new work requirements—typically 80 hours per month of work, volunteering, or education—and mandates twice-yearly eligibility reviews. In Wisconsin alone, the Department of Health Services estimates that 63,000 residents are at risk of losing benefits, sparking deep concern among healthcare providers and disabled recipients like Barbara Lockington, who fear the new mandates will make essential life-saving treatments unaffordable.