Medicare, Medicaid, and Related Data Sources
AARP ScoreCard Comparing State Programs
Every three years, the Public Policy Institute of the American Association of Retired Persons (AARP) publishes a score card on comparing the long-term services and supports in each state. The 2023 version contains data on 26 indicators and extensive commentary on how parts of long-term care services and supports fit together and influence one another. This is an authoritative theoretical discussion wrapped in quantitative measurement.
http://www.longtermscorecard.org/
Access Rule
The Medicaid Access rule released in April 2024 represents a considerable strengthening of procedures states must follow to improve access to HCBS services.
CMS has also spent considerable effort in developing both quality measures and requirements for state administrative changes to improve HCBS care. An example of this is the April 30, 2024 CMS conference call which occurred in the context of the “Ensuring Access to Medicaid Services” rule published by CMS on May 10, 2024. Among other topics the rule discussed:
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- Required states to establish Medicaid Beneficiary Councils and improve access to Medicaid Advisory Committees;
- Strengthened oversight of person-centered service planning;
- Phased in new reporting requirements and minimum performance levels for persons receiving HCBS services under Sections 1915(c), (i), (j), and (k) and 1915 demonstrations;
- Required states to meet nationwide critical incident reporting standards:
- Required states to report their waiting lists for HCBS services;
- Directed states to ensure that within six years 80% of state payments for HCBS services shall be spent on salaries of direct care workers, as opposed to administrative overhead and,
- Strengthened transparency rules applicable when reporting quality results and cutting Medicaid rates.
See Final Rule at https://www.federalregister.gov/documents/2024/05/10/2024-08363/medicaid-program-ensuring-access-to-medicaid-service
See also chart Lising timelines of required changes https://www.medicaid.gov/medicaid/access-care/downloads/applicability-date-chart-ac.pdf
CMCS All-State Call Transcript April 30, 2024 (medicaid.gov)
Aging Related Resource Links
Every year the Alzheimer’s Association publishes a fact and figures report. It is an excellent report and well worth knowing about. For example, its 2025 report on page 18 states that there is a 5% prevalence in ages 65-74, a 13.2% prevalence in ages 75-84 and a 33.4% prevalence in ages 85 and older.
http://www.alz.org/alzheimers_disease_facts_and_figures.asp
The Wisconsin Center for Demography of Health and Aging and the Washington D.C. Population Reference Bureau have considerable material on health and aging in countries outside of the continental United States.
American Rescue Plan Act of 2021
The American Rescue Plan Act of 2021(ARPA) in Section 9817 provided a one-time increase in the federal funds participation (FFP) rate for home and community-based services meaning CMS paid a larger share of the costs. In April 2024, ADvancing States released a report on state experience in applying for and using the ARPA funds. See State Implementation of ARPA HCBS Spending Plans: Lessons Learned
Assisted Living Information Sources
https://www.assistedliving.org/assisted-living-options-for-people-with-disabilities/
CMS main data page
If you are seeking information on Medicaid and Medicare this is the “go-to” starting point. This high-level website provides links to multiple CMS data pages.
https://www.cms.gov/Research-Statistics-Data-and-Systems/Research-Statistics-Data-and-Systems
In the last seven years Medicare has substantively improved access to its data and more web sites are now available. For example, see Medicare beneficiary information at
Medicare Enrollment Reports | CMS
Medicaid and CHIP enrollment data can be found at
Medicaid & CHIP Enrollment Data | Medicaid
The CMS Office of Minority Health publishes an interactive mapping tool using state and county levels enabling the comparison of health and person characteristics. Data can be downloaded at. https://www.cms.gov/About-CMS/Agency-Information/OMH/OMH-Mapping-Medicare-Disparities.html
The CMS hospital service area file contains hospital discharges, total days of care, and total charges summarized by hospital provider number and the ZIP code of the Medicare beneficiary. This is an extraordinarily useful data base. For example, it can be used to identify the distance persons travel to be admitted to each hospital.
Limited data set (LDS) files contain Medicare beneficiary information by type of provider. They are typically large files, may require a fee to obtain, and are too large for Excel.
https://www.cms.gov/Research-Statistics-Data-and-Systems/Files-for-Order/LimitedDataSets/index.html
The Market Saturation and Utilization Data Tool is an outstanding mapping tool. It maps information on services to Medicare beneficiaries at the state, county and CBSA levels. The tool is well worth looking at.
CMS publishes a Physician Fee Schedule lookup tool (PPL) that allows searches for what CMS pays for specific procedure codes.
Overview of the Medicare Physician Fee Schedule Search | CMS
The CMS Program Statistics site is an informative place showing a host of easy-to-use Excel tables summarizing data on Medicare providers and utilization.
Waivers are additions to state Medicaid Plans authorized by sections of the Social Security Act. This website provides information about section 1115 ,section 1915(b) and Section 1915 (c) waivers including a list of state waivers, an explanation of what section 1115 is, and a link to behavioral health waivers. CMS has received about 636 waivers and states have considerable flexibility to shape the kind of Medicaid program they want. The links on the site contain descriptions of each state’s waivers.
CMS Policy
CMS regularly hosts telephone calls with states to discuss policy changes. This is the best way of understanding current CMS thinking on substantive issues. Go to Medicaid.gov and type in “All state calls” in the search box to access transcripts of these calls.
CMS 1915(c), 1915(i), 1915(j) and 1915(k) Waiver Programs
The websites provide data on which states use which waiver and contain explanations of what the waivers are for.
http://www.cms.hhs.gov/default.asp?
https://www.medicaid.gov/medicaid/hcbs/authorities/index.html
In April 2025 CMS eliminated federal matching funding under Section 1115 for Designated State Health Programs (DSHP) and Designated State Investment Pergrems (DSIP). CMS stated it did see a federal need to use 1115 programs to cover services previously paid for by states.
https://content.govdelivery.com/accounts/USCMSMEDICAID/bulletins/3db6c70
This next website contains summary tables and slides from the CMS annual Current Medicare Beneficiary Survey CMBS). The Medicare Current Beneficiary Survey MCBS is a continuous, in-person, longitudinal survey of a representative national sample of the Medicare population. The data tends to lag current year information.
https://www.cms.gov/research-statistics-data-and-systems/research/mcbs/data-tables.html
See the MCBS Public Use File (PUF) at
CMS has AN Opioid prescribing information tool available at
New Medicare Part D Opioid Drug Mapping Tool Available | CMS
CMS Drug Spending Dashboards can be accessed at:
CMS cost report data
Cost reports are submitted by providers to Medicare and are used to calculate the reimbursement rate that Medicare will pay providers. This website is a good introduction to the reporting forms used by Medicare and the data collected. Readers are advised that these data can be difficult to use and cost data on XYZ Hospital or XYZ Nursing Home will not be easily found. CMS warns that “The Hospital and Skilled Nursing Facility cost report data cannot be loaded into Microsoft Excel. The numeric data file for these cost reports is too large for the application…most of our data users are loading the data into Oracle, SAS, SPSS Statistical Package, Microsoft SQL Server, and DB2. Some users have reported successfully loading the data into Microsoft Access; however, the stated limit from Microsoft is 2GB. CMS does not support or provide any technical assistance of user’s choice of data load.”
https://www.cms.gov/Research-Statistics-Data-and-Systems/Downloadable-Public-Use-Files/Cost-Reports/
CMS Innovations
CMS continues to creatively sponsor new delivery programs. For 2025, the CMS Innovation Center has rebranded its efforts to implement the Making American Healthy Again policy direction of the Health and Human Services (HHS) Department. See its current innovation models and its 2025 policy direction at
https://www.cms.gov/priorities/innovation/models#views=models
See also the HMA report on value-based entities.
Analyzing the Expanded Landscape of Value-Based Entities – Health Management Associates
See also the CMS innovation in behavioral health.
https://www.cms.gov/files/document/ibh-fact-sheet.pdf
Certification and Compliance Information
Medicare promulgates “Conditions of Participation” which are standards of care and operation that providers are expected to perform if they are enrolled as Medicare providers. Medicare regularly visits providers to ensure compliance. This website contains an informative overview of the program and its relation to Medicaid conditions set by State Medicaid programs.
Community-based care Transitions Programs
In Medicaid speak, the word “transitions” refers to programs that encourage residents to leave institutions such as nursing homes, state mental health hospitals and centers for persons with developmental and intellectual disabilities. Under the Money Follows the Person Program (MFP) CMS made considerable efforts to transition persons from institutions.
The first national evaluation report done by Mathematica Inc. presented uniform data for the years 2007-2017 on state efforts in the “Money Follows the Person program. Between 2008 and 2020 this program transitioned 107,000 persons from institutions.
Money Follows the Person Demonstration: Second National Evaluation (mathematica.org)
See also Mathematica’s 2022 report on MFP at https://www.medicaid.gov/medicaid/long-term-services-supports/downloads/mfp-2020-transitions-brief.pdf
Transition programs have been widely discussed and Googling “transition programs from institutional to community-based care” will provide useful results.
Daily News
A newsletter that does an excellent job of providing current health policy news is
http://californiahealthline.org/
The journal Health Affairs publishes Health Affairs Today which is an online publication. To access the publication, contact Health Affairs at https://www.healthaffairs.org/
The Public Policy Institute of the American Association of Retired Persons has excellent studies and educational events.
Dartmouth Atlas
The Dartmouth Atlas, now no longer updated, has long been used to examine the distribution and use of medical services. For example, rates of hysterectomies by geographical area. Data prior to 2020 has been achieved and is available.
http://www.dartmouthatlas.org/
Department of Health and Human Services Reorganization
In March 2025m the Department of Health and Human Services (HHS) announced it would reduce its work force from 82,000 persons to 62,000. The budgetary impact has been reported to be a 30% reduction in programs.
“Public health initiatives aimed at HIV/AIDS prevention would no longer exist. Major parts of the National Institutes of Health would be abolished. The Food and Drug Administration would cease routine inspections at food facilities. And funding for many of the administration’s priorities are on the chopping block, including federal programs focused on autism, chronic disease, drug abuse and mental health….In perhaps the most significant element of the restructuring, the proposal suggests eliminating funding for the Substance Abuse and Mental Health Services Administration, Health Resources and Services Administration, Agency for Healthcare Research and Quality, and Administration for Community Living, along with a handful of other smaller programs.”
https://www.hhs.gov/press-room/hhs-restructuring-doge.html
See also Politico
Trump administration mulls sharp funding cuts at health agencies – POLITICO
Department of Justice
The Sections of the Civil Rights Division of the Department of Justice are influential and important advocacy organizations in American healthcare. A review of the cases and actions they have brought against states and individual providers shows the immense impact these Sections have had. When states and municipalities fail to provide health care and access to community resources, they are legally obligated to provide, a significant recourse are state disability rights organizations and the Department of Justice. For example, see the 2019 Opinion by the federal judge agreeing with DOJ regarding state mental health hospitals in Mississippi.
See Mississippi opinion at Memorandum Opinion and Order (justice.gov)
For example, see the work of the Special Litigation Section of the Civil Rights Division at
Special Litigation Section | CRT | Department of Justice
Direct Care Workforce
PHI has long been the “go to” source for information on direct care workforce policy discussions and data.
Fair Labor Standards Act
Changes to the Fair Labor Standards Act (FLSA) brought minimum wage and overtime protection to millions of domestic home workers. These changes were known as the “Home Care Rule” and were implemented in the Code of Federal Regulations (CFR) at 29 CFR 552. These protections were likely the most significant federal action impacting home health care in the last decade.
On July 25th, 2025 the Department of Labor (DOL) issued a bulletin instructing Wage and Hour Division (WHD) field staff to immediately cease enforcing minimum wage and overtime protections for home care workers.
See fab2025-4.pdf
The text of federal regulations can be dry reading. For background on why the Fair Labor regulations were changed see
https://www.dol.gov/whd/regs/compliance/whdfsfinalrule.pdf
https://www.federalregister.gov/documents/2013/10/01/2013-22799/application-of-the-fair-labor-standards-act-to-domestic-service
For a 2020 study of the implementation of the FLSA see
Fair Labor Standards Act: Observations on the Effects of the Home Care Rule | advancingstates.org
General Information about Medicare
Medicare information for consumers, including plan comparisons can be found at www.medicareguide.com. This is a commercial website but has useful information about the parts of Medicare.
While focused on Louisiana, Medicare in Louisiana | MedicarePlans.com offers good information about Medicare in general.
Health Insurance Estimates
SHADAC provides state-level estimates of persons with types of insurance by general demographic types e.g. age, race. Particularly useful when you need to know the demographic characteristics of persons with health insurance.
The U.S. small area estimates of health insurance provide county-level data on persons with health insurance.
https://www.census.gov/programs-surveys/sahie.html
See also U. S Census tables in the B27000, S2700 and B18000 series. These are detailed tables by state, county and census tract on persons with various combinations of insurance. For example, if you are planning to build a new health care facility you can use the Census data to identify how many persons in adjacent census tracts have private insurance. The Census tables are geocoded for mapping. The tables can be found using the search portal at:
https://data.census.gov/cedsci/
Home and Community-Based Services Clearinghouse
The Clearinghouse is the largest and most significant repository of HCBS studies. For example, entering “Hendrickson” in its search box will yield 18 reports I have authored or coauthored. http://www.nasuad.org/hcbs
Home and Community-Based Services
January 2014 CMS rules defining what “Home and Community-Based” include:
CMS required states to ensure that their home and community-based care programs were in fact home and community-based care programs and not mini institutions by another name.
See for a website containing the transition plans required of the states.
https://www.medicaid.gov/medicaid/hcbs/transition-plan/index.html
The National Academy of State Health Policy is an excellent source of current information on state medical and health affairs.
Information about persons with disabilities
There are substantive websites with information about the prevalence of disabilities, programs treating persons with disabilities, and disability policy.
Home | State of the States in Intellectual and Developmental Disabilities (ku.edu)
National Eye Institute | National Eye Institute (nih.gov)
www.dol.gov/agencies/odep/research-evaluation/statistics
Facts | The Faces and Facts of Disability | SSA
Disability Counts – An RTC: Rural Product (umt.edu)
https://acl.gov/aging-and-disability-in-america/data-and-research
Medicaid Statistical Information
Medicaid is a state program with federal cost sharing. CMS tracks state expenditures through the automated Medicaid Budget and Expenditure System/State Children’s Health Insurance Budget and Expenditure System (MBES/CBES). States submit data and state specific data are available on the CMS 21 and CMS 64 reports. See
https://www.medicaid.gov/medicaid/finance/state-expenditure-reporting/expenditure-reports/index.html
See also.
Nursing Homes
There are substantive websites with comparative information about nursing home quality and utilization.
Home | Provider Data Catalog (cms.gov)
https://www.medicare.gov/care-compare/
Information of the CMS Five-Star Quality rating system applied to nursing homes.
The American Health Care Association (AHCA) is the lobbying association for nursing homes and has kept excellent utilization data on nursing homes for decades. Most of its data are only available to members.
https://www.ahcancal.org/research_data/pages/default.aspx
The National Center for Health Statistics does national studies such as the Study of Long-Term Care Providers and the National Nursing Home Survey.
https://www.cdc.gov/nchs/index.htm
Opioids
CMS has released mapping information on Medicare and Medicaid prescribing of Opioids.
The Department of Justice maintains a little-known data base called ARCOS that tracks the legal distribution of drugs by state and zip code. This is an excellent data base for information on the amount in grams of narcotics and other drugs prescribed in states. All production of opioids and other controlled substances is approved by the Drug Enforcement Administration (DEA) using Aggregate Production Quotas (APQs). It is convenient to blame and sue individual drug companies such as Purdue for pushing opioids on doctors and patients. However, if the DEA had enforced lower production levels the United States would have had less of an opioid epidemic.
Diversion Control Division | Automation of Reports and Consolidated Orders System (ARCOS)
Persons who are Dually Eligible for Medicare and Medicaid
https://www.cms.gov/Outreach-and-Education/Medicare-Learning-Network-
March 2023 People Dually Eligible Medicare and Medicaid Fact Sheet
Seniors & Medicare and Medicaid Enrollees | Medicaid
This link provides resources to State Medicaid Agencies for coordinating care for persons eligible for both Medicaid and Medicare including Medicare data resources.
http://www.statedataresourcecenter.com/
CMS has released a Manual for State Payment of Medicare Premiums (formerly called “State Buy-in Manual”). The manual, updated in 2023, contains information and instructions to states on federal policy, operations, and systems concerning the payment of Medicare Parts A and B premiums (or buy-in) for individuals dually eligible for Medicare and Medicaid. See:
Quality
CMS has spent considerable effort developing quality healthcare measures and improves them yearly. This website is the gateway to CMS quality measures.
https://www.cms.gov/Medicare/Quality-Initiatives-Patient-Assessment-Instruments/MMS/index.html
See also the ‘CMS Hospice quality reporting website at
CMS has established national metrices for the medical care provided to adults and children. These metrics and the results of applying them can be found at
See also.
Quality standards for Medicaid Managed Care have been issued in 2016, 2017, 2020 and most recently in 2024. The 2024 Final Rule is extensive and the 2024CMS Fact Sheet lists its major provisions. https://www.cms.gov/newsroom/fact-sheets/medicaid-and-childrens-health-insurance-program-managed-care-access-finance-and-quality-final-rule
CMS is also now requiring states to have home and community-based quality measures. Data on these will be collected during 2025 and reported on in 2026.
Open Payments is a national transparency program that collects and publishes information about financial relationships between the health care industry and providers. The 2022 data are accessible at
https://openpaymentsdata.cms.gov/.
Rural Health Information
http://www.countyhealthrankings.org/
Finding Statistics and Data Related to Rural Health
Data on disability rates by county can be found at the resource page of this University of Montana site.
Rural Institute for Inclusive Communities (umt.edu)
AHRQ’s UDS Mapper has data on local health centers. See
The Rural Health Research Center at Muskie has a long history of first-rate research on rural areas. Its publications are well worth looking at if you want information on rural health conditions.
https://www.ruralhealthresearch.org/centers/maine
Social Security Act and Code of Federal Regulations
The Medicare and Medicaid programs are governed by Titles 18 and 19 of The Social Security Act (SSA) as implemented in regulations in the Code of Federal Regulations (CFR). All significant policy discussions revolve around the meaning of, or the addition or deletion of language in these documents.
https://www.ssa.gov/OP_Home/ssact/ssact-toc.htm
https://www.gpo.gov/fdsys/browse/collectionCfr.action?collectionCode=CFR
State Medicaid Policy
A major vehicle for States to express their policy changes is by amendments to their Medicaid program. CMS keeps a website of these amendments. CMS also issues “guidance” to state Medicaid programs in the form of State Medicaid Director letters.
https://www.medicaid.gov/medicaid/medicaid-state-plan-amendments/index.html
https://www.medicaid.gov/federal-policy-guidance/index.html
States participating in CMS Initiatives
Advancing States is the association for state aging programs and keeps track of the plethora of federal programs affecting long-term care services and supports. It is especially useful in identifying which states are participating in which initiative. Its quarterly update shows the excellent effort that AS makes to keep states informed of Medicaid integration efforts.
http://www.nasuad.org/initiatives/tracking-state-activity/state-medicaid-integration-tracker
Substance Abuse and Mental Health Services Administration (SAMHSA)
SAMHSA has five significant data resources for researchers. These reports are the main starting point for conducting needs assessments for substance use treatment programs. With few exceptions, such as New Jersey, states do not collect the substate data or occupancy that SAMHSA does. Moreover, states typically collect data on only facilities that received funds from the state whereas SAMHSA attempts a data collection on all facilities.
Each year the National Survey of Substance Abuse Treatment Services (N-SSATS) collects data for the day of March 31 on the location, number, type of services offered, and the number of clients served that day. This is a useful data set if you are comparing the types of service offered in states and number of programs providing them.
The National Survey of Drug Use and Health (NSDUH) uses randomized samples of persons to obtain information on the types of drugs persons use, alcohol consumption, mental status, and treatment use. The NSDUH survey is an authoritative source of prevalence data at state and substate regional levels.
The Treatment Episode Data Set (TEDS) collects national and state substance abuse admission and discharge information including gender, age at admission, race/ethnicity, number of prior treatment episodes, treatment referral source, and length of stay in treatment.
The National Mental Health Services Survey (N-MHSS) collects data on mental health program data including the location, characteristics, services offered, and number of clients in treatment at mental health treatment facilities (public and private).
Four of these data sets can be accessed at:
https://www.samhsa.gov/data/all-reports
A fifth data resource that SAMHSA provides is the Behavioral Health Treatment Services Locator. You can search by distance from location of interest and type of program. See Locator at:
https://findtreatment.samhsa.gov/
“Unwinding Waivers”
Medicaid eligibility requirements were paused during the COVID 19 pandemic. Since the pandemic has ebbed, states are once again enforcing eligibility requirements. CMS has promulgated temporary waivers under SSA section 1902 (e)(14)(A) to help states conduct Medicaid determinations. As of December 2024, CMS had approved 405 waivers for 52 states and territories. See