News
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.
URBAN MILWAUKEE: Gov. Evers Proclaims April as “ABLE to Save” Month in Wisconsin
By SD Network, 2026-04-15
Governor Tony Evers has proclaimed April 2026 as “ABLE to Save” Month in Wisconsin to raise awareness for Achieving a Better Life Experience (ABLE) accounts, which allow individuals with disabilities to save for qualified expenses without losing eligibility for federal benefits like Medicaid or SSI. Managed by the Wisconsin Department of Financial Institutions (DFI), the initiative emphasizes the theme “Start Small. Big Possibilities.,” highlighting how these tax-advantaged accounts can be used for education, housing, and transportation. While Wisconsin is currently working to establish its own state-specific savings plan, residents can presently utilize the ABLE National Resource Center to find information on opening accounts in other states that accept out-of-state participants.
CBS 58 MILWAUKEE:Local workshops aim to make biking more accessible for people of all ages and abilities
By SD Network, 2026-04-12
Through a partnership between Bublr Bikes and the Friendship Circle of Wisconsin, Milwaukee is hosting two free workshops designed to make cycling more inclusive for individuals of all ages and abilities. The sessions, scheduled for April 19 at the Friendship Circle and May 14 at Wheel and Sprocket in Bay View, will provide instruction on cycling safety, hand signals, and the use of adaptive bikes. These workshops serve as a lead-up to the annual Walk and Bike4Friendship fundraiser on June 28, which supports the Friendship Circle's ongoing mission to foster community inclusion for people living with disabilities.
The National Council on Independent Living (NCIL) has launched a video oral history series preserving firsthand accounts from leaders of the Independent Living movement. Episodes feature figures like Kelly Buckland, Charlie Carr, and Colleen Starkloff, who recount how NCIL grew from a 1982 organizing meeting into a national force — building Centers for Independent Living (CILs), fighting for the Americans with Disabilities Act (ADA), and expanding community-based attendant services as alternatives to institutionalization.