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The National Caregiving Strategy was just delivered to Congress – here are 10 actions that stood out to us

The RAISE National Strategy final recommendations was just published after 3 years of work. There are 345 actions organizations have committed to taking in the next year and 150+ recommended actions for Medicare, Medicaid and other organizations to adopt. Below are 10 of those actions that stood out to us. But first, some quick background:

What is RAISE?

RAISE is an act put in place in 2018 that required a diverse set of stakeholders in family caregiving to recommend a national strategy for supporting family caregivers. Stakeholders included family caregivers and care recipients, healthcare and social service providers, government agencies, and employers. After years of assessing needs and current capabilities, RAISE came out with initial recommendations in 2021 and delivered the final 2022 strategy to Congress last week. The strategy is meant to be a ‘living’ document and will be updated every 2 years.

What Did the Strategy Include?

The most recent strategy summarized all the work that’s happened over the past few years, including caregiver research and current state, prioritized recommendations, and deep dives into topics like Medicare and Medicaid. The main addition was a set of specific actions that can be taken today by existing agencies, and actions that are recommended for other organizations to take. The actions were intended to be thought starters for organizations who want to support family caregivers rather than a set list.

10 Actions that Stood Out to Us

We’ll organize this into RAISE’s two categories: (1) Actions that will be taken within the next 1-3 years through existing agencies & budgets, and (2) Actions that are recommended for organizations and states to take. The ones that can be taken with existing agencies and budgets are incremental on a whole, but they’re also guaranteed. We highlight 3 of those.

The ones that are recommended to other organizations are more exciting and transformational, but will require more work to move forward. We highlight 7 of those and will start there.

Recommendations for action by other organizations & states:

Accrue social security benefits via family caregiving: Today if someone leaves their job to care for a loved one, they will not accrue social security, which leads to low support in their own retirement years. This would help caregivers accrue benefits for the hours they spend in caregiving.

Expand self-direction models where family members can get paid to care for a loved one: This is a recommendation for consideration across Medicaid, VA, and Medicare. States offer this today in Medicaid but eligibility criteria is strict and waiting lists could mean years before someone gets this support. This is not offered in Medicare today, but RAISE suggests some approaches such as expanding choice through scope of practice waivers (like the state of CO has today), MA plans, or existing demonstration models. Giving people the autonomy to choose their care providers will directly address satisfaction, care outcomes, and financial sustainability of caregiving.

Make respite a standard benefit in Medicaid or Medicare: Today this is optionally offered as part of MA plans or within some Medicaid programs. This would make respite care a required benefit. Respite is by far the #1 need expressed by family caregivers, so this is a big step. However, it would be dependent on the ability to increase the direct care workforce, which is another recommended action (see below).

Increase the direct care workforce by increasing pay, benefit, training & career pathways, and Visa policies: One of the most compelling in this category is to change US Visa policies to allow au pairs to serve as caregivers of older adults and people of all ages with disability. RAISE also recommends that Medicaid increase pay, training and career pathways for the direct care workforce. Beyond Medicaid, RAISE recommends that states look at new ways to fund LTSS beyond Medicaid, such as the publicly-funded long-term care program in WA state.

Hire & train dedicated staff for family caregiver engagement: This could be clinical or non-clinical staff who directly work with family caregivers and would have special training in conditions like dementia. RAISE also recommends having post-discharge coach for family caregivers.

Centralize patient data across patient portals with multi-person access: In line with work already happening out of ONC, this addresses a root cause issue that puts coordination burden on family caregivers

Financially incentivize family caregiver support including new billing codes: Today there are few billing codes that can be used for family caregiver support or training. Providers often spend time doing this but have no way of it being recognized. This recommendation calls for financial incentives and specifically calls out a new billing code for family consultation.

Actions committed to in the next 1-3 years through existing agencies & budgets:

Assess effectiveness of different state models for LTSS reform and Direct Care Worker compensation (lead: ASPE): This will look for state & community models that have been successful in these 2 critical areas. The care worker shortage and LTSS program format are 2 of the most difficult root problems in caregiver support. We’re looking forward to seeing what data comes from this.

Add a caregiver module for the National Medicare Training (NMT) Program (lead: CMS): This will create a new family caregiver module in the training materials that CMS distributes via partners to people with Medicare. Recognizing this as a core piece of Medicare is an important step.

Continue to support grantees in training the primary care workforce on caregiver assessments (lead: HRSA): This will  use evidence-supported and culturally sensitive family caregiver assessments to determine the willingness, ability, and needs of caregivers. Today these are often ‘assumed’ by providers. An assessment will take individual preferences into better account.

If you’d like to learn about how we help healthcare organizations empower family caregivers (including enabling some of the recommendations above), contact us!