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/
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 2023 report on page 20 states that there is a 10.8% prevalence in ages 65-74, a 13.1% prevalence in ages 75-84 and a 33.3% 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.
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 beneficiary information at
Medicare Enrollment Reports | CMS
Medicaid and CHIP enrollment data can be found at
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. https://www.cms.gov/About-CMS/Agency-Information/OMH/OMH-Mapping-Medicare-Disparities.html
The CMS hospital service area file contains number of discharges, total days of care, and total charges summarized by hospital provider number and the ZIP code of the Medicare beneficiary. It can be used to identify the distance persons travel to be admitted to particular hospitals.
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 waivers including a list of state waivers, an explanation of what section 1115 is, and a link to behavioral health waivers. CMS has approved 618 1115 waivers and states have considerable flexibility to shape the kind of Medicaid program they want.
https://www.medicaid.gov/medicaid/section-1115-demo/index.html
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
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 two Opioid prescribing information tools available at
https://go.cms.gov/opioidheatmap
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 example, on June 8, 2023, the Centers for Medicare & Medicaid Services (CMS) announced a new voluntary primary care model – the Making Care Primary (MCP) Model – that will be tested in eight states. Launching July 1, 2024, the 10.5-year model will improve care management and care coordination, equip primary care clinicians with tools to form partnerships with health care specialists
An overview of the Medicare projects can be found 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.
The evaluation reports of Mathematica have 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 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
Two e-mail newsletters that do an excellent job of providing the health policy news of the day are:
http://khn.org/morning-briefing/
http://californiahealthline.org/
Elizabeth Lee of New Editions puts out an informative LTSS newsletter. To be added to her mailing list contact her at:
Elizabethlee@neweditions.net
The journal Health Affairs publishes Health Affairs Today which is an online publication. To access the publication contact Health Affairs at:
customerservice@healthaffairs.org
The Public Policy Institute of the American Association of Retired Persons has excellent studies and educational events.
Dartmouth Atlas
The Dartmouth Atlas has long been used to examine the distribution and use of medical services. For example, rates of hysterectomies by geographical area.
http://www.dartmouthatlas.org/
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 the 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.
http://phinational.org/policy/states
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.
https://www.govinfo.gov/content/pkg/CFR-2019-title29-vol3/pdf/CFR-2019-title29-vol3.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 good information about the various 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 particular types of insurance by general demographic types e.g. age, race. Very useful when you need to know the demographic characteristics of persons with particular kinds of 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. 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 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 state transition plans
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
For years, Steve Eiken published essential, authoritative summary cost and enrollment data on Medicaid waiver programs. These reports are now being prepared by Mathematica.
Reports & Evaluations | Medicaid
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 excellent national studies such as the Study of Long-Term Care Providers and the National Nursing Home Survey.
https://www.cdc.gov/nchs/index.htm
http://www.cdc.gov/nchs/nnhs.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) through the use of 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.”
Persons who are Dually Eligible for Medicare and Medicaid
http://www.dualsdemoadvocacy.org/state-profiles/
https://www.cms.gov/Outreach-and-Education/Medicare-Learning-Network-
Seniors & Medicare and Medicaid Enrollees | Medicaid
MLN/MLNProducts/downloads/Medicare_Beneficiaries_Dual_Eligibles_At_a_Glance.pdf
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 an updated Manual for State Payment of Medicare Premiums (formerly called “State Buy-in Manual”). The manual updates 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
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 program 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
NASUAD 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 weekly Friday update show the excellent effort that NASUAD makes to keep states informed.
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 although data on the number of program users is not available for all years.
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 (collected every other year) 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 January 2024 CMS had approved 394 waivers for 52 states and territories. See
COVID-19 PHE Unwinding Section 1902(e)(14)(A) Waiver Approvals | Medicaid