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Federal Caregiver Policy

U.S. federal caregiver support has an uneven history. The infrastructure exists on paper, is funded enough to matter, and yet is underused enough that most family caregivers never encounter it. This page synthesizes the federal policy arc so the rest of the wiki can reason about what is already in place, where the gaps are, and where a caregiver-facing product like GiveCare fits.

The policy arc, briefly

1965  Older Americans Act (OAA) creates the Aging Network.
1973  OAA Title III-B adds the Supportive Services Program —
      home-delivered meals, transportation, personal care, access services —
      aimed at the older adult.
2000  OAA Title III-E adds the National Family Caregiver Support Program
      (NFCSP) — first federal program specifically for family caregivers.
2007  RTI evaluates Title III-B under the Administration on Aging.[^iii-b-evaluation-2007]
2014  CARE Act begins passing state-by-state: hospitals must identify,
      document, and involve family caregivers at discharge.
2016  Lewin Group publishes first full-scale NFCSP process evaluation.[^nfcsp-process-evaluation-2016]
2019  UC Davis Family Caregiving Institute publishes Research Priorities
      in Caregiving — the field-level research agenda.[^research-priorities-2019]
2022  HHS publishes the National Strategy to Support Family Caregivers —
      first whole-of-government caregiver strategy.[^hhs-caregiver-strategy-2022]
2023  OPTN Act (P.L. 118-14) launches OPTN Modernization — creates a window
      to write caregiver support into transplant reform.
2024  ACL publishes the Report to Congress on implementation of the
      National Caregiver Strategy.[^acl-2024]
2024+ Medicare introduces caregiver training services (CTS) billing codes
      and caregiver health risk assessment codes.[^nac-transplant-disparities-2025]

Title III-E NFCSP: what the federal caregiver program actually does

The NFCSP is the only federal program designed specifically for family caregivers. It flows from ACL → State Units on Aging (SUAs) → Area Agencies on Aging (AAAs) → Local Service Providers (LSPs), and is required to deliver five core services: information, access assistance, counseling/support groups/training, respite, and supplemental services2.

When the program launched in 2000, most Areas on Aging did not have caregiver-specific offerings. By 2015, SUAs reported growth of +247% in support groups, +227% in training and education, +563% in counseling, and +93% in respite compared to pre-NFCSP baseline2. That is a program that built new infrastructure where little existed.

The structural issue is not the program's design — it is uneven delivery and limited reach relative to the 63 million Americans providing unpaid care. AAAs differ by several-fold in caregiver program maturity, and most caregivers do not know NFCSP exists, do not know they qualify, or never get referred.

Title III-B: the older-adult-facing supportive services program

Title III-B predates NFCSP by decades and is structurally separate. It funds non-medical services for the older adult directly — home-delivered meals, transportation, personal care, chore services, information and referral, case management, and access services1. Caregivers encounter III-B indirectly, because III-B is often what allows the older adult to remain at home and therefore allows the caregiver to remain in role.

The 2007 RTI evaluation documented substantial variation in service mix, targeting, and consumer characteristics across states and AAAs1 — state-by-state variation in the OAA is structural, not incidental, and any caregiver-facing product must treat geography as a first-class feature.

The 2022 National Strategy to Support Family Caregivers

The HHS 2022 strategy is the first whole-of-government U.S. caregiver strategy4. It centers on a three-step framing that recurs throughout federal caregiver policy:

  1. Identify the caregiver.
  2. Assess their needs.
  3. Connect them to services and supports.

Each step is a known pain point. Most caregivers do not self-identify as caregivers; most assessments, when they happen at all, focus on the patient; and most connections to support happen through caregiver initiative, not through systematic referral.

The 2024 ACL Report to Congress documented implementation progress and gaps5, and reinforced that 74% of caregivers report services enabled them to provide care longer and 62% indicated the alternative would be nursing home placement — which is the efficiency case for federal caregiver investment.

The 2019 Research Priorities: what the field already called for

In 2018, the UC Davis Family Caregiving Institute convened 50+ thought leaders to define the caregiving field's research agenda. The resulting Research Priorities in Caregiving named ten priorities; several directly describe what a caregiver-support product should be3:

Priority What the field asked for
A Technologies that facilitate choice and shared decision-making
B Technology integrated across the trajectory of caregiving
C Family-centered adaptive interventions across conditions, stages, needs, preferences, and resources
E Interventions that address real-world complexity, translation, scalability, and sustainability
G Risk/needs assessment of changing needs over the trajectory
H Implementation research on evidence-based programs for diverse populations
I Outcome measures relevant to caregivers from diverse social and cultural groups

The 2019 document also explicitly acknowledges that pragmatic-trial and RCT-alternative methodologies are needed to evaluate caregiver technology interventions, because technology innovation outpaces classical trial cycles3.

Live reimbursement levers

Two recent mechanisms have started to shift caregiver support from an unreimbursed cost center to a reimbursable service6:

  • Medicare Caregiver Training Services (CTS) billing codes — clinicians can bill for training caregivers to perform medical and nursing tasks at home.
  • Medicare caregiver health risk assessment codes — clinicians can bill for assessing the caregiver's own health risks as part of care planning.
  • CARE Act (enacted state-by-state) — hospitals must identify, document, and involve family caregivers at discharge.

Adoption is still early. Many centers and clinicians do not yet use these codes. Pointing at them, and making them easier to use, is a near-term lever for caregiver support without waiting for new legislation.

What clinical education is being trained to do

In parallel with federal policy, the clinical-education side of the field has also defined what caregiver-facing practice should look like. In 2021, the UC Davis Family Caregiving Institute published the Interprofessional Family Caregiving Competencies for use in undergraduate, graduate, and professional clinical training7. The competencies span four domains:

  1. The nature of family caregiving — theoretical perspectives, positive and negative consequences, heterogeneity, sociocultural variables.
  2. Identification and assessment — incorporate caregiver identification into routine health assessments; use valid and reliable tools to assess preparedness, relationship, and positive/negative caregiving consequences; and monitor changes over time.
  3. Providing family-centered care — shared decision-making; tailored evidence-based interventions; integrating formal and informal support; incorporating caregiver self-care; and developing a caregiving support plan.
  4. The context of family caregiving — tailoring by illness, recognizing biases, adapting to sociocultural variables, and understanding the financing landscape.

The UC Davis competencies define the family caregiver as an integral member of the healthcare team, not an adjunct7. That framing changes what caregiver-facing products are and who they are accountable to: not "wellness apps for worried relatives," but operational partners to a healthcare team that has already been trained to treat caregivers this way.

GiveCare's design operationalizes much of Domain 2 (identification and longitudinal assessment with valid tools) and Domain 3 (shared decision-making, tailored support, integrating formal and informal supports) at caregiver scale — where clinical time and workforce alone cannot reach. That is pre-validation alignment: the competencies are the standard; the product is the delivery mechanism.

The 2025 policy conversation is live

The federal caregiver-policy conversation did not end with the 2022 Strategy or the 2024 ACL Report. In June 2025, the National Academies of Sciences, Engineering, and Medicine convened a two-day workshop — Strategies and Interventions to Strengthen Support for Family Caregiving — explicitly focused on evidence-based interventions, scaling successful programs nationwide, and financing mechanisms including Medicare payment for caregiver education, Medicare value-based payments, state Medicaid pathways, and employer-based programs8. The planning committee drew from the same policy network that authored the NFCSP evaluations, the HHS Strategy, and the NAC Transplant Caregiving Collaborative.

Two implications for positioning:

  • Payment mechanisms are the active frontier. Medicare Caregiver Training Services (CTS) billing codes, Medicare value-based payments that include caregiver-facing services, state Medicaid pathways, and employer-based caregiver programs are all explicitly in scope for 2025 federal-level conversation. Products that are designed to plug into those reimbursement pathways — rather than around them — are positioned inside where the policy oxygen is.
  • Scaling, not invention, is the remaining gap. The 2019 Research Priorities called for translation, scalability, and sustainability work. The 2025 NASEM agenda is now funding that conversation. GiveCare's SMS-delivered, partnership-first, geography-as-feature design is an answer to the scaling problem, not a new intervention category.

How this maps to GiveCare's positioning

The federal policy arc tells a specific story: the infrastructure is there, the research priorities are public, the reimbursement levers exist, and the gap is in identification, assessment, and connection at caregiver scale. That is the gap GiveCare is designed for.

  • Identify — Mira over SMS meets caregivers before they self-identify or enter the Aging Network. This addresses the identification bottleneck the 2022 HHS strategy names directly4.
  • Assess — The GiveCare Score and the progressive assessment system align with Research Priority G (risk/needs assessment over the trajectory) and Priority I (diverse outcome measures)3.
  • Connect — Benefits discovery and referral into the Aging Network, transplant centers, and condition-specific organizations align with the 2022 strategy's third step and with the 2024 ACL Report's implementation emphasis45.
  • Technology-enabled across the trajectory — SMS rather than an app, longitudinal rather than one-session, adaptive to changing caregiver needs, designed for low-income and rural families from the start. This aligns with Research Priorities A, B, C, and E3.
  • Reimbursable pathways — Medicare CTS codes and caregiver health risk assessment codes are under-used levers that caregiver-facing products can surface to clinicians and families as reimbursable, rather than remaining invisible infrastructure6.

The practical conclusion is that GiveCare is not positioned against federal caregiver policy — it is positioned inside its stated priorities, addressing its named gaps, on the specific axes (identification, assessment, connection, trajectory, diversity, technology) that the policy record already calls out.

  1. Rabiner DJ, Wiener JM, Khatutsky G, Brown DW, Osber DS (RTI). "Evaluation of the Supportive Services Program (Title III-B) of the Older Americans Act." 2007. Source → ↩↩

  2. Administration for Community Living / Lewin Group. "NFCSP Process Evaluation: Final Report." 2016. Source → ↩↩

  3. UC Davis Family Caregiving Institute. "Research Priorities in Caregiving." 2019. Source → ↩↩↩↩

  4. HHS. "2022 National Strategy to Support Family Caregivers." Source → ↩↩↩

  5. ACL. "2024 Report to Congress on the 2022 National Strategy to Support Family Caregivers." Source → ↩↩

  6. National Alliance for Caregiving. "Transplant Caregiver Disparities Brief." 2025. Source → ↩↩

  7. Sexson KE et al. "Interprofessional Family Caregiving Competencies." UC Davis Family Caregiving Institute, 2021. Source → ↩↩

  8. National Academies of Sciences, Engineering, and Medicine. "Strategies and Interventions to Strengthen Support for Family Caregiving: A Workshop." Board on Health Care Services, June 5–6, 2025. Source → ↩