States Tackle Care Quality for Seniors & Disabled

Navigating the Shifting Landscape of Care

Across the United States, state legislatures are grappling with a critical challenge: ensuring high-quality, accessible, and safe services for growing populations of older adults and individuals with intellectual and developmental disabilities (IDD). Driven by demographic shifts like the aging of Baby Boomers, increased awareness and diagnosis of developmental disabilities, and persistent systemic issues laid bare by the recent pandemic, a wave of legislative activity seeks to reform how these vital services are defined, delivered, regulated, and funded. This isn't just about tweaking existing systems; it's a multi-faceted effort reflecting a deeper societal commitment to supporting vulnerable citizens, demanding greater accountability from providers, and addressing the long-standing crisis facing the direct care workforce.

Recent legislative sessions reveal a concentrated focus on modernizing state-administered and regulated health and human services. Lawmakers are moving beyond incremental changes, introducing comprehensive reforms aimed at enhancing oversight, improving care standards, expanding eligibility, and ensuring the financial stability and transparency of the care system. From redefining what constitutes a developmental disability to establishing new regulatory bodies and mandating specific financial practices for nursing homes, states are employing a diverse toolkit to address deeply entrenched problems.

Expanding Definitions and Launching New Initiatives

A fundamental aspect of this legislative trend involves broadening the scope of who qualifies for state support. Recognizing that traditional definitions may exclude individuals with significant needs, several states are updating their statutes. For instance, Nevada Assembly Bill 6 (NV AB6) establishes a Fetal Alcohol Spectrum Disorder (FASD) Treatment Assistance Program, while New York Assembly Bill 999 (NY A00999) explicitly adds FASD to the definition of developmental disability. Similarly, Illinois House Bill 2541 (IL HB2541) incorporates Prader-Willi syndrome into its developmental disability framework, exempting diagnosed individuals from certain cognitive assessments for service eligibility. New York also considered adding Spina Bifida via New York Assembly Bill 3572 (NY A03572). These changes aim to ensure individuals with specific, often complex conditions receive appropriate recognition and access to necessary services.

Beyond definitions, states are creating new programs and commissioning studies to address specific needs and gather data for future policy. Maryland is pioneering initiatives like the Senior Call-Check and Social Connections Program, renamed and potentially enhanced by Maryland House Bill 158 (MD HB158) and Senate Bill 223 (MD SB223), designed to combat social isolation among older adults. Hawaii House Bill 700 (HI HB700) proposes a pilot program for cognitive assessments for Medicare beneficiaries, aiming to improve early detection of conditions like dementia. Maryland House Bill 334 (MD HB334) establishes a workgroup to study universal newborn nurse home visiting services, focusing on potential benefits for families and infants. Oregon Senate Bill 133 (OR SB133) mandates a study of developmental disabilities services to inform future legislative action, while Hawaii Senate Bill 850 (HI SB850) directs the State Council on Developmental Disabilities to study health disparities experienced by individuals with IDD.

Reforming Long-Term Care: A Focus on Facilities

The regulation and oversight of long-term care facilities, particularly nursing homes and assisted living centers, represent a major focal point of recent legislative efforts. Spurred by concerns over quality, staffing, and financial practices, states are implementing stricter rules. Financial transparency is a key theme, exemplified by Rhode Island Senate Bill 704 (RI S0704), which mandates detailed financial reporting for nursing homes. Connecticut Senate Bill 805 (CT SB0805) takes a direct approach, proposing a requirement that nursing homes spend at least eighty percent of revenues on direct patient care.

Quality metrics and resident safety are also receiving significant attention. Florida Senate Bill 170 (FL S0170) aims to improve quality by requiring enhanced consumer satisfaction surveys, specific qualifications for medical directors, patient safety culture surveys, and integration with the state's health information exchange. Staffing levels, a perennial concern, are addressed in bills like Illinois House Bill 2922 (IL HB2922), which modifies how staffing ratios are calculated and potentially adjusts penalty thresholds. Procedures surrounding facility closures, evacuations, and resident transfers are being tightened, as seen in Connecticut House Bill 6987 (CT HB06987), which requires consideration of resident proximity to support networks during transfers and mandates studies on evacuation procedures and alternative housing. Virginia Senate Bill 1153 (VA SB1153) clarifies the process for appointing a receiver for financially troubled assisted living facilities to protect residents.

Recognizing the need for collaboration, Illinois House Bill 3428 (IL HB3428) mandates joint training sessions involving state surveyors, facility providers, the state ombudsman, and provider associations to improve understanding and compliance regarding regulations and citation patterns. Oklahoma House Bill 2262 (OK HB2262) focuses on disclosure requirements for facilities offering specialized dementia care.

Addressing the Direct Care Workforce Crisis

Underpinning the entire care system is the direct care workforce – the certified nursing assistants, personal care aides, direct support professionals, and others who provide essential hands-on support. This workforce faces chronic challenges, including low wages, inadequate training, high turnover, and significant shortages. States are increasingly recognizing that improving care quality is impossible without addressing these workforce issues.

One notable emerging strategy is the establishment of Nursing Home Workforce Standards Boards. Bills like Connecticut Senate Bill 1417 (CT SB01417) and Rhode Island House Bill 5257 (RI H5257) propose creating boards composed of workers, employers, and state representatives to set minimum compensation, benefits, and training standards for the industry. Minnesota House File 500 (MN HF500) seeks to modify its existing board. Proponents argue these boards can raise standards across the board, stabilize the workforce, and improve care quality, while opponents often raise concerns about costs and regulatory burden.

Other legislative approaches target workforce development and support. Illinois House Bill 3511 (IL HB3511) establishes grant programs to help nonprofit organizations hire licensed clinical social workers for supervision and expands loan repayment programs for social workers in shortage areas. Oregon House Bill 3168 (OR HB3168) directs the state to adopt rules requiring enhanced staffing ratios under specific high-need circumstances and mandates staff safety plans in certain residential settings. Rhode Island House Bill 5228 (RI H5228) aims to incorporate collective bargaining rights into self-directed support programs for adults with developmental disabilities, potentially empowering workers within that model.

Strengthening Oversight and Accountability

Ensuring that regulations are followed and that public funds are used effectively requires robust oversight and accountability mechanisms. States are enhancing their capacity in this area through various means. Audits are a key tool; Maryland House Bill 251 (MD HB251) adjusts the frequency of financial and compliance audits for local departments of social services, while Connecticut House Bill 7105 (CT HB07105) clarifies the definition and process for forensic audits conducted by the Department of Social Services, particularly concerning potential fraud or abuse in facilities.

Data collection and reporting requirements are being expanded to provide a clearer picture of system performance and resident outcomes. Florida House Bill 633 (FL H0633) imposes detailed reporting requirements on behavioral health managing entities, demanding standardized electronic data submission on performance measures, which the state must then make publicly available. Similarly, Florida House Bill 1103 (FL H1103) requires the Agency for Persons with Disabilities (APD) to post quarterly reports online, track individuals awaiting services by priority category, and mandates specific data sharing and coordination related to a pilot program for individuals with developmental disabilities. Hawaii's HI SB850 focuses data collection specifically on health disparities for those with IDD.

Structural changes are also being implemented. Texas House Bill 2807 (TX HB2807) relates to the state's intellectual and developmental disability coordinating council, aiming to improve statewide planning and coordination. New York Senate Bill 4775 (NY S04775) seeks to safeguard the cash accounts of individuals with developmental disabilities residing in state-overseen facilities. Maine Legislative Document 800 (ME LD800) focuses specifically on funding advocacy services to ensure individuals with intellectual disabilities have support in navigating the system and asserting their rights.

Streamlining Systems and Improving Access

Alongside regulation and oversight, states are working to make service systems more efficient, coordinated, and accessible. This includes administrative restructuring, such as Maryland House Bill 36 (MD HB36) and Senate Bill 212 (MD SB212), which consolidate certain aging services programs and transfer responsibilities from an interagency committee to the Department of Aging. Kansas House Bill 2221 (KS HB2221) involves abolishing a specific fund within the Department of Corrections and creating a new, corresponding fund under the Kansas Department for Aging and Disability Services, potentially streamlining substance abuse treatment funding.

Improving access points and information flow is another priority. Illinois House Bill 3195 (IL HB3195) and Senate Bill 2194 (IL SB2194) aim to strengthen the state's 2-1-1 human services referral system by refining the designation process for the lead entity and enhancing reporting requirements. Connecticut's CT HB06987 proposes a database for real-time tracking of nursing home bed availability, addressing a common frustration for families and discharge planners. Rhode Island House Bill 5170 (RI H5170) and Senate Bill 787 (RI S0787) seek to make nursing home waiting lists more transparent by requiring facilities with a high percentage of self-pay residents to admit applicants on a first-come, first-served basis for non-private rooms.

Efforts are also underway to simplify regulations for certain providers and adjust funding mechanisms. Florida House Bill 1353 (FL H1353) and Senate Bill 1412 (FL S1412) revise provisions related to home health agency administration and program criteria. Rate adjustments for providers are addressed in bills like Hawaii House Bill 1477 (HI HB1477) for domiciliary care, Illinois House Bill 3160 (IL HB3160) requiring detailed rate sheets for home and community-based service providers, and Minnesota House File 381 (MN HF381) modifying rate-setting policies for home and community-based waiver services and increasing room and board rates.

Regional Variations: A Patchwork of Priorities

While common themes emerge, the specific approaches taken by states vary considerably, reflecting different political contexts, existing service structures, and immediate priorities. Nevada (NV AB6) and New York (NY A00999) show a specific focus on incorporating FASD into their disability service frameworks. Connecticut (CT SB0805, CT SB01417) and Rhode Island (RI S0704, RI H5257) stand out for their strong legislative pushes on nursing home financial mandates and workforce standards boards.

Florida (FL H0633, FL H1103) emphasizes detailed performance and data reporting requirements for its behavioral health managing entities and APD. Maryland (MD HB158, MD HB36) is notable for its innovative social connection program for seniors and its efforts to consolidate aging services administration. Illinois (IL HB2541, IL HB3195) addresses specific conditions like Prader-Willi and focuses on improving the 2-1-1 referral system. Oregon (OR SB133, OR HB3168) prioritizes studies and staff safety in residential settings. Hawaii (HI HB700, HI SB850) is piloting cognitive assessments and studying health disparities. This patchwork highlights that while the challenges are shared, the solutions being pursued are tailored to each state's unique circumstances.

Impact on People, Providers, and the Path to Equity

These legislative changes carry significant implications for all stakeholders. For individuals with disabilities and older adults, the potential benefits include expanded eligibility, improved service quality, enhanced safety protections, greater choice (e.g., Rhode Island's RI H5228 on self-direction), and stronger advocacy (ME LD800). Families and caregivers may see improved support systems and greater peace of mind, though some changes could also shift caregiving responsibilities.

Service providers, including nursing homes, assisted living facilities, and home health agencies, face a more complex picture. While some measures might offer clearer guidelines or targeted funding increases, many impose new regulatory burdens, compliance costs, and reporting requirements. Financial mandates (CT SB0805) or stringent staffing rules (IL HB2922) could strain budgets, potentially impacting the viability of some providers, particularly smaller facilities or those operating in rural areas with thin margins. The direct care workforce stands to gain from initiatives aimed at improving wages and standards (CT SB01417, RI H5257), but they also face increased demands and scrutiny.

Crucially, the implementation of these policies must prioritize equity. There's a risk that new regulations could disproportionately affect providers serving low-income or minority communities, or that access to improved services might not be evenly distributed across geographic regions or demographic groups. Assessment tools, like those mentioned in Illinois' IL HB3328 for dementia, must be validated across diverse populations to avoid bias. Ensuring culturally competent service delivery, language access for immigrant communities, and non-discrimination protections for LGBTQ+ individuals are vital components of successful reform. Collecting disaggregated data, as suggested in Hawaii's [HI SB850](/hi/bill/1929357], is a critical first step in monitoring and addressing potential disparities.

The Road Ahead: Sustaining Momentum for Change

The flurry of legislative activity surrounding services for older adults and individuals with disabilities signals a clear recognition of urgent needs. This policy area is unlikely to recede from state agendas, driven by inexorable demographic trends and persistent systemic weaknesses. We can anticipate continued efforts to refine disability definitions, balancing diagnostic categories with functional needs. The ongoing tension between institutional care and home-and-community-based services (HCBS) will likely fuel further legislation promoting HCBS expansion, care coordination, and potentially the repurposing or closure of underperforming facilities, alongside efforts to bolster quality within remaining institutions.

Workforce challenges will remain paramount, potentially leading more states to explore wage standards, career ladders, and innovative oversight models like workforce standards boards. The push for greater transparency, data-driven decision-making, and the integration of technology for oversight and service delivery will intensify. Federal policies, particularly Centers for Medicare & Medicaid Services (CMS) regulations on nursing home staffing and funding levels for HCBS, will continue to significantly influence state-level actions. Ultimately, the success of these reforms hinges not just on legislative passage, but on adequate funding, robust implementation capacity within state agencies, effective stakeholder collaboration, and a sustained commitment to ensuring these changes translate into meaningful improvements in the lives of the people they are intended to serve.