Transparency about what we don’t know and why it matters. This page documents the metrics that are missing, incomplete, or locked behind public records requests across every state profile on this site. Roughly half of the 100+ metrics we track per state cannot be filled from publicly available sources.
Data gaps are not neutral. When states don’t publish home care vacancy rates, waitlist lengths, or county-level provider availability, policymakers make decisions without understanding the human consequences. Every gap documented below represents a question that someone — a legislator, a caregiver, a person with disabilities — cannot answer with publicly available information.
When a metric is flagged Gap, it means no government agency, research organization, or industry source publishes that data point for the state in question. When it is flagged FOIA, the data likely exists inside a state agency but requires a formal public records request to obtain. In both cases, the public cannot independently verify whether their state’s caregiving infrastructure is adequate — and advocacy efforts are weakened by the absence of hard numbers.
We attempted to populate 100+ metrics for each of the 51 jurisdictions (50 states + D.C.) using the source hierarchy documented in our Source Registry. For each metric, we searched Tier 1 sources (BLS, CMS, state agencies), then Tier 2 (PHI, KFF, MIT), then Tier 3 (Genworth, provider associations), then Tier 4 (derived calculations). Metrics that could not be populated from any tier were flagged as gaps. Metrics where the data is known to exist inside state agencies but is not published were flagged as FOIA targets. The patterns below emerged consistently across states.
Wage and cost-of-living data is the most complete category thanks to BLS and MIT Living Wage Calculator, but several metrics remain stubbornly unavailable at the state level for direct care workers specifically.
| Metric | Description | Status | Why it’s missing |
|---|---|---|---|
| Income and poverty — state-specific breakdowns | |||
| 1.8 | Low-income household rate | Gap | State-specific data for DCW households is not published. ACS has general low-income data, but filtering to home care worker households requires custom tabulation not available in public tables. |
| 1.9 | Public assistance reliance | Gap | Requires state-specific American Community Survey analysis cross-referencing occupation codes (SOC 31-1120) with public assistance receipt. PHI provides national estimates; state breakdowns require custom ACS queries. |
| 1.10 | Housing cost-burdened rate | Gap | Census publishes housing burden by income level but not by occupation. Deriving a DCW-specific rate requires matching ACS occupation and housing cost microdata. |
| 1.11 | Uninsured rate (DCW-specific) | Gap | State-level general uninsured rates are available (KFF, Census). DCW-specific uninsured rates require occupation-filtered analysis. PHI publishes national estimates only. |
| Wage competitiveness and cost data | |||
| 1.13 | Wage competitiveness ratio | Gap | Requires BLS cross-occupation comparison — home care aide wages vs. retail, food service, and other entry-level occupations in each state. Data exists in BLS OES but requires custom analysis. |
| 1.14–1.15 | Genworth cost of care data | Gap | Genworth/CareScout Cost of Care Survey covers most states but not all are published separately. Some small states are rolled into regional averages. Survey methodology has changed over time. |
| 1.16–1.19 | State-specific care cost data | Gap | Varies widely by program structure. States with managed LTSS publish rate schedules; fee-for-service states may publish fee schedules; self-directed programs may have different rate structures. No single source covers all states consistently. |
Workforce data is the most gap-heavy category. Most states do not publish home care-specific vacancy, turnover, or staffing data — the very metrics needed to quantify the crisis.
| Metric | Description | Status | Why it’s missing |
|---|---|---|---|
| Vacancy and openings — the invisible shortage | |||
| 2.1 | Home care job openings | Gap | BLS JOLTS provides regional health care vacancy data but not home care-specific or state-level. Only a handful of states (MN, WI, WA) conduct their own vacancy surveys for this sector. |
| 2.2 | Home care vacancy rate | Gap | Most states do not publish home care-specific vacancy rates. Provider association surveys (LeadingAge, AHCA affiliates) exist for some states but use inconsistent methodologies. |
| 2.3 | Time to fill positions | Gap | No government source tracks time-to-fill for home care positions. Industry benchmarking data (HCAOA) is members-only and not state-specific. |
| Service access and denial | |||
| 2.5 | Services denied due to staffing | Gap | Requires FOIA in most states. Medicaid agencies track authorized vs. delivered hours but rarely publish the gap. This is perhaps the single most important unpublished metric. |
| 2.6 | Unfilled authorized hours | Gap | Related to 2.5. MCOs and state agencies have claims data showing authorized vs. utilized services, but this data requires FOIA or is not compiled in accessible form. |
| Nursing facility staffing | |||
| 2.7 | NF closure count | Gap | CMS publishes active provider lists but tracking closures over time requires longitudinal analysis. State-level detail on closure reasons and displacement impacts requires independent research. |
| 2.8 | NF staffing shortfall | Gap | CMS Payroll-Based Journal (PBJ) data provides facility-level staffing hours but calculating the shortfall against the new federal minimum requires analysis. State aggregation is not published. |
| Workforce demographics and projections | |||
| 2.10–2.12 | Workforce projections and growth | Gap | BLS publishes national 10-year projections for SOC 31-1120. State-level projections exist from state labor departments but are not consistently available or updated across all 50 states. |
| 2.16 | Health insurance access (DCW) | Gap | Not published at the state level for home care workers specifically. PHI estimates ~43% nationally lack employer-sponsored insurance. State breakdowns require ACS microdata analysis. |
| 2.18 | Unpaid caregiver data | Gap | AARP/NAC publishes national Caregiving in the U.S. survey (~53 million). State-level breakdowns are limited — some states have conducted their own caregiver surveys, but coverage is inconsistent. |
The workforce crisis is defined by vacancies and unfilled hours — yet these are the exact metrics that states are least likely to publish. Providers know their own vacancy rates; MCOs know their network adequacy gaps; state agencies know their authorized-vs-delivered service ratios. But without systematic publication requirements, this data remains locked inside organizations that have little incentive to reveal the extent of the shortage.
Policy data is a mix of well-documented legislative provisions and deeply opaque program-level details. Waiver program enrollment numbers, family caregiver payment rules, and MCO contract terms are among the most consistently unavailable metrics.
| Metric | Description | Status | Why it’s missing |
|---|---|---|---|
| Program enrollment — who is actually served? | |||
| 3.7 | Self-directed program enrollment | Gap | Not consistently published. Some states report self-directed enrollment in waiver applications or CMS 372 reports, but many do not break out self-directed participants from total waiver enrollment. |
| 3.9–3.10 | Managed LTC enrollment details | Gap | Total managed care enrollment is published, but MLTSS-specific enrollment — the number actually receiving long-term services through MCOs — is rarely broken out in public reports. |
| 3.12 | HCBS waitlist data | Gap | Varies dramatically by state. Some states (FL, GA) publish waitlist numbers; most do not. KFF compiles periodic snapshots but data is often 1–2 years old. Real-time waitlist data is rarely public. |
| Family caregiver policies — the #1 FOIA target | |||
| 3.13–3.15 | Spouse/parent payment rules | Gap | Whether Medicaid will pay family members (spouses, parents of adult children) as caregivers is the single most-requested FOIA topic. Rules are embedded in waiver terms, state plan amendments, and provider enrollment policies that are rarely compiled in one place. |
| 3.16–3.18 | Self-directed wage and hour caps | Gap | Each self-directed program sets its own wage floor/ceiling and weekly hour limits. These are buried in program manuals and provider agreements that require program-level research in each state. |
| Managed care opacity | |||
| 3.19–3.20 | MCO rate pass-through | Gap | Whether MCOs are required to pass through rate increases to direct care workers is a critical policy question. Most states do not publish this requirement (or lack thereof) in accessible form. |
| 3.21 | MCO contract provisions | Gap | Almost universally requires FOIA. MCO contracts with state Medicaid agencies contain workforce requirements, network adequacy standards, and rate provisions, but these multi-hundred-page documents are rarely posted online. |
Whether a state allows Medicaid to pay a spouse, parent, or adult child to serve as a paid caregiver depends on an intersection of federal waiver authority, state plan amendments, self-directed program rules, and MCO policies. No single source compiles this across all states. Our FOIA templates target this gap specifically — see Template #3: Family Caregiver Payment in the FOIA Tracker.
Geographic data is the most systematically incomplete category. County-level analysis is the biggest single gap across the entire site — and it requires FOIA in every state.
| Metric | Description | Status | Why it’s missing |
|---|---|---|---|
| Rural access — the unmeasured crisis | |||
| 4.1 | Travel time / mileage reimbursement | Gap | Not standardized across states. Some programs reimburse travel; others do not. Mileage policies are embedded in provider manuals and vary by waiver program within a single state. |
| 4.2 | County-level provider availability | FOIA | The biggest systematic gap. Requires FOIA in all states. State Medicaid agencies track provider enrollment by county but do not publish geographic distribution data. This is essential for identifying “caregiver deserts.” |
| 4.3 | County-level service utilization | FOIA | Paired with 4.2. Claims data showing where services are actually delivered (vs. where they are authorized) requires FOIA. This data would reveal which counties have the worst authorized-to-delivered service gaps. |
| Infrastructure and technology | |||
| 4.4 | Broadband access for caregivers | Gap | FCC publishes county-level broadband data, but linking it to caregiver workforce distribution requires combining FCC data with Medicaid provider location data (which itself requires FOIA). |
| 4.5–4.6 | EVV implementation and accommodations | Gap | 21st Century Cures Act requires EVV, but state implementation details — especially rural/connectivity accommodations — vary widely. Some states have published EVV implementation guides; many have not. |
| Nursing facility geography | |||
| 4.8 | Rural vs. urban NF admissions | FOIA | Requires county-level CMS data analysis. MDS data contains facility location, but analyzing admission patterns by rural/urban classification requires research-grade data access (ResDAC) or state-level FOIA. |
| 4.9–4.11 | NF closure impact and bed projections | Gap | State-level analysis of nursing facility closures, bed reductions, and future capacity requires independent research. CMS provides facility lists but tracking closures over time and projecting future capacity is not done systematically. |
Metrics 4.2 and 4.3 — county-level provider availability and service utilization — carry FOIA status in all 51 jurisdictions. This represents 102 individual FOIA requests just for these two metrics. Without this data, it is impossible to map “caregiver deserts” — counties where authorized Medicaid HCBS services cannot be delivered because no providers are available. Our FOIA templates include a dedicated county-level data request (see Template #7: Geographic Provider Data).
Medicaid financing and rate methodology data is critical for advocacy but deeply technical and often unpublished. Rate formulas, MCO contract requirements, and federal funding projections are particularly difficult to obtain.
| Metric | Description | Status | Why it’s missing |
|---|---|---|---|
| Managed care contracts and oversight | |||
| 5.6–5.7 | MCO contract cycles and workforce reporting | FOIA | MCO contract renewal schedules and whether contracts require workforce metrics reporting (turnover, vacancy, wage pass-through compliance) are buried in contract documents that almost always require FOIA to obtain. |
| 5.8 | Rate formula adequacy | Gap | Requires detailed analysis of each state’s rate-setting methodology. Some states publish rate studies; others set rates through budget negotiations without published formulas. Assessing whether rates are “adequate” requires comparing to independent benchmarks. |
| Federal funding and fiscal impact | |||
| 5.12–5.13 | Federal Medicaid loss projections | Gap | Only available for states where legislative fiscal bureaus (LFBs) have published analyses of proposed federal Medicaid changes. As of 2025, fewer than a dozen states have published detailed fiscal impact analyses of per-capita cap or block grant proposals. |
| 5.14–5.15 | State-directed payments and provider taxes | Gap | Complex, state-specific financing mechanisms. CMS approves state-directed payment programs, but the details — which providers qualify, how funds flow, whether payments reach direct care workers — require individual state research. |
The FOIA Tracker contains 10 pre-drafted public records request templates. Each template targets a specific cluster of data gaps documented above. Together, the 10 templates cover approximately 490 individual requests across 49 states.
| # | FOIA Template | Gaps Targeted | Priority | What it unlocks |
|---|---|---|---|---|
| 1 | Medicaid HCBS Rate Schedules | 1.16–1.19, 5.8 | High | Current reimbursement rates for home care services, rate-setting methodology, and historical rate changes |
| 2 | Authorized vs. Delivered Hours | 2.5–2.6 | Critical | The gap between what Medicaid authorizes and what is actually delivered — the clearest measure of workforce shortage impact |
| 3 | Family Caregiver Payment | 3.13–3.15 | Critical | Whether and how states allow Medicaid payment to spouse, parent, or adult child caregivers across each waiver program |
| 4 | Self-Directed Program Details | 3.7, 3.16–3.18 | High | Enrollment counts, wage/hour caps, employer authority details, and fiscal intermediary arrangements |
| 5 | MCO Contract Provisions | 3.19–3.21, 5.6–5.7 | High | Workforce requirements, rate pass-through provisions, and network adequacy standards in managed care contracts |
| 6 | HCBS Waitlist Data | 3.12 | High | Current waitlist counts by waiver program, average wait time, and waitlist mortality/attrition data |
| 7 | Geographic Provider Data | 4.2–4.3 | Critical | County-level provider enrollment and claims data needed to map caregiver deserts |
| 8 | Nursing Facility Staffing | 2.7–2.8, 4.8 | Medium | State-compiled staffing data, closure tracking, and rural/urban admission patterns |
| 9 | EVV Implementation | 4.5–4.6 | Medium | Electronic visit verification implementation details, rural accommodations, and compliance data |
| 10 | Provider Tax and Directed Payments | 5.14–5.15 | Medium | State-directed payment program details, provider tax revenue, and fund flow to direct care workers |
Not all gaps are equal. Some data simply requires analysis of existing public sources; some requires FOIA; some may not be collected by anyone.
County-level provider maps (4.2–4.3), authorized vs. delivered hours (2.5–2.6), family caregiver payment rules (3.13–3.15), and MCO contract workforce provisions (3.21). These gaps directly impair advocacy and policy analysis.
Approximately 20 metrics per state fall into this category. The data sits inside Medicaid agencies, MCO contracts, and program files. Our 10 FOIA templates target these systematically. A coordinated FOIA campaign could fill ~40% of all current gaps.
Wage competitiveness (1.13), housing burden (1.10), and workforce projections (2.10–2.12) can be derived from BLS, Census, and ACS data with custom queries. These are research projects, not FOIA targets.
DCW-specific uninsured rates (1.11), public assistance reliance by occupation (1.9), and time-to-fill metrics (2.3) may not be collected by any entity. These require new data collection efforts or survey instruments.
This site is built on the premise that transparency improves policy. If you have access to data that fills any gap documented above, we want to hear from you.
If your work involves ACS microdata analysis, BLS custom tabulations, or Medicaid claims research, the “Requires Analysis” gaps above may overlap with your existing data access. We welcome derived metrics with documented methodology. Custom ACS queries for DCW occupation codes (SOC 31-1120) filtered by state, income, insurance status, and housing cost burden would fill a significant number of Category 1 gaps.
If your organization has filed FOIA requests for any of the data described above, or if you have program-level data on waitlists, family caregiver policies, or self-directed program enrollment in your state, contributing that data helps build the evidence base for every other state’s advocacy efforts. Use the FOIA templates in our FOIA Tracker to file requests in your state.
Much of the data flagged as FOIA is routine program data that could be published proactively. If your agency collects county-level provider data, authorized-vs-delivered service ratios, or self-directed program enrollment, publishing that data in accessible format would serve your constituents and improve public accountability. We can help identify the specific data formats that would be most useful.
To contribute data, corrections, or source suggestions, please reach out through the contact information on the site. All contributed data will be verified against our source hierarchy and attributed appropriately. We prioritize state-specific primary sources and will flag the confidence level of any contributed data using the same status system described in our Source Registry.
Pre-drafted public records requests targeting the gaps documented above, ready to file in your state.
→ FOIA trackerThe 20 core national databases, source hierarchy, and data confidence levels used across all state profiles.
→ Source registryModel legislation, talking points, FOIA templates, and advocacy resources for every state.
→ Action ToolkitSee which gaps affect your state. Every metric carries a status badge showing its source quality.
→ State profiles