Joint Meeting of the 

RAISE & SGRG Advisory Councils

September 19, 2023

To turn on closed captioning, click the “CC” icon

at the bottom of your screen.
Call to Order

Alison Barkoff

Senior Official Performing the duties of 

Administrator and Assistant Secretary for Aging

Principal Deputy Administrator

2
HHS Secretary 

Welcoming Remarks

3

Honorable Xavier Becerra

Secretary of Health and Human Services
Welcoming Remarks 

Announcement of Council Co-Chairs

Alison Barkoff

Senior Official Performing the duties of 

Administrator and Assistant Secretary for Aging

Principal Deputy Administrator

4
Roll Call

5
Council Collaborators

Overview of Resources

6
RAISE Family Caregiving and Supporting Grandparents Raising 

Grandchildren Advisory Councils Virtual Joint Meeting 

September 19, 2023

Rani E. Snyder, MPA

Vice President, Program

The John A. Hartford Foundation

Public-Private Collaboration to Support the National 

Strategy to Support Family Caregivers
D E D I C A T E D T O I M P R O V I N G T H E C A R E O F O L D E R A D U L T S

A private philanthropy 

based in New York City, 

established by family 

owners of the A&P 

grocery chain in 1929
D E D I C A T E D T O I M P R O V I N G T H E C A R E O F O L D E R A D U L T S

Mission & Priorities

D E D I C A T E D T O I M P R O V I N G T H E C A R E O F O L D E R A D U L T S

PRIORITY AREAS

Age-Friendly

Health 

Systems

Family

Caregiving

Serious Illness 

& 

End of Life
D E D I C A T E D T O I M P R O V I N G T H E C A R E O F O L D E R A D U L T S

Supporting work of the RAISE Act Advisory 

Council assembled by the Administration for 

Community Living

• Research policies and evidence-based programs, 

convene experts, provide information to the public

• Test the Advisory Council’s recommendations for family 

caregiving policies and programs in select states

• National Strategy released in September 2022

https://nashp.org/policy/aging-and-disabilities/family-caregiving/

NASHP: The RAISE Act Family Caregiver 

Resource and Dissemination Center
D E D I C A T E D T O I M P R O V I N G T H E C A R E O F O L D E R A D U L T S

A Public-Private Collaboration to RAISE 

Up Family Caregivers

ActOnRAISE.org

RAISE Act Family 

Caregiver 

Implementation

and Technical 

Assistance Center
D E D I C A T E D T O I M P R O V I N G T H E C A R E O F O L D E R A D U L T S

Thank You!

R a n i . S n y d e r @ j o h n a h a r t f o r d . o r g

W W W. J O H N A H A R T F O R D . O R G
nashp.org

Supporting 

Implementation of the 

National Strategy

RAISE & SGRG Councils Meeting

September 19, 2023
Wendy Fox-Grage

14

Senior Policy Fellow

National Academy for State Health Policy

Email: WFGrage@nashp.org
About NASHP

The National Academy for State 

Health Policy (NASHP) is a 

nonpartisan, nonprofit organization 

committed to developing and 

advancing state health policy 

innovations and solutions. 

NASHP provides a unique forum for 

the productive exchange of strategies 

across state government, including 

the executive and legislative branches. 

15
nashp.org

RAISE Family Caregiver Resource and 

Dissemination Center

16

nashp.org/family-caregiving
nashp.org

SupportCaregiving.org

17
nashp.org

SupportCaregiving.org

18
nashp.org

SupportCaregiving.org

19
nashp.org @NASHPhealth

NASHP | National 

Academy for State 

Health Policy

Thank you!
GRANDFAMILIES & KINSHIP 

SUPPORT NETWORK 

OVERVIEW

Ana Beltran, JD

Director, Grandfamilies & Kinship Support Network

abeltran@gu.org

Joint Meeting

Supporting Grandparents Raising Grandchildren (SGRG) 

and RAISE Family Caregiving 

Advisory Councils

September 19, 2023
Children in 

Kinship/

Grandfamilies

22

www.gksnetwork.org/resources/grandfamilies-kinship-familiesstrengths-challenges/ and www.gksnetwork.org/kinship-data/
• 5-year (2021-2026) cooperative 

agreement with ACL

• Purpose is to provide technical 

assistance to the array of tribal, state, 

and territorial government agencies, 

as well as non-profit organizations 

that serve kinship families

• Not designed to serve the families 

directly – working to improve systems 

for families

23
How We Help

24

Learning Collaboratives and 

Information Dissemination

The Network hosts webinars and 

facilitates learning collaboratives.

Individual Assistance

We respond to individual requests 

for help from government 

agencies, and nonprofit 

organizations.

A Centralized Hub

The Network is elevating exemplary 

kinship/grandfamily practices and 

programs from around the country 

on its new accessible website, 

www.GKSNetwork.org.
Individual Assistance & 

Resource to Councils

25
26 www.GKSNetwork.org
Stay Connected & 

Access Support

Sign up for our monthly newsletter,

which will provide you with updates 

on new Network resources. 

Visit our website GKSNetwork.org

27
The Network is supported by the Administration for Community Living (ACL), U.S. Department of Health and 

Human Services (HHS) as part of a financial assistance award totaling $9,950,000 with 95 percentage funded 

by ACL/HHS and $523,684 and 5 percentage funded by non-government sources. The contents are those of 

the authors and do not necessarily represent the official views of, nor an endorsement, by ACL/HHS, or 

the U.S. Government.
Analysis of Public Comments 

on the National Strategy

And Inventory of Federal Actions

September 19, 2023
Public Comments

• Over 580 responses 

• Researchers analyzed open-ended responses 

to three questions:

– Q3 asked what are “the three most important 

topics/issues for the Advisory Councils”

– Q4 asked “what’s missing” from the National 

Strategy

– Q5 asked for “additional comments”

30
Who Commented?

31

Table 1: Respondents by Category

Respondent category Number Proportion

A family caregiver 256 44%

An advocate for family caregivers 267 46%

A researcher on caregiving topics 74 13%

Employed by a government program that serves family caregivers 54 9%

Employed by an organization that serves family caregivers 212 37%

Other/Prefer not to say 56 10%

Chose more than one category 207 36%

Total responses 581

Note: Numbers do not sum to 581 because respondents could choose more than one category. 
What Did They Comment On?

Table 2: Section Commented Upon

32

Response category Number Proportion

Actions for States, Communities, and Others 73 13%

Federal Actions 89 15%

First Principles 40 7%

Global Comments 232 40%

Project Narrative 147 25%
Top Three Issues for the Councils

• Goal 3 (Caregiver services and supports) 

received the most attention. The most 

frequently mentioned top priorities were:

– Improving the quality, supply, and wages of direct 

care workers

– Expanding:

• Caregiver training and support 

• Respite care

– Increasing the supply and affordability of LTSS

33
Illustrative Quotes

“We agree that there is a shortage of medical 

and direct support professionals and that rates 

must be increased to retain them.. well-trained 

should also mean that their training includes the 

lived experience of diverse family caregivers.”

“P

“Prioritize addressing the Direct Care 

Workforce shortage with enhanced 

training; increase appeal of a direct care 

career path through wage and benefit 

improvements and increased social 

regard; advocate for immigration 

policies that support the entry of 

interested workforce.” “The HCBS LTSS industry has a 

massive workforce shortage that 

could partially be met through the 

recognition of and payment to family 

caregivers.... CMS needs create some 

sort of incentive for states to utilize 

this model more.”

“We strongly agree with the concept 

of making a career out of being a 

DCW. It is essential to make training 

consistent across each individual 

state and preferably all states. It is 

also important to create a path to job 

promotion and job retention. It is not 

going to be easy, but it is certainly 

worth a national effort.”

“Demand for direct care workers 

drastically exceeds the number of 

available workers. Federal agencies have 

a particular role to play in increasing 

wages, expanding benefits, providing 

career ladders, and addressing shortages 

through other strategies. ”

34
We know that Caregivers need more 

than just acknowledgement and 

recognition! They need real, 

meaningful help offered by those 

who have been there, done that and 

“An important component of have the stories to prove it.”

the strategy is to encourage 

states to rebalance Medicaid 

spending to support 

caregivers in the community 

by adequately funding 

HCBS.”

35

“The single most requested service 

from family caregivers is respite.”

“We recognize that some essential 

reforms, such as financing, may be 

politically challenging today but 

nonetheless must be pursued, even 

incrementally, to create the 

environment and conditions for more 

transformative change.”

“Respite services for family 

caregivers are important to their 

mental and physical health and 

ability to continue providing care. 

Respite allows a social life as well, 

thereby reducing social isolation 

and loneliness linked to 

premature death and disease.”

“Respite Care 

should become a 

state plan service 

under Medicaid.”

“Educating 

Caregivers is 

part of the 

solution.”

“As a family caregiver myself... the 

first rule is that the caregiver has to

be supported for them to be an 

effective caregiver especially over 

the long term. A parent/caregiver 

may know their loved one best but 

nearly all of the caregivers I've met 

would welcome more training and 

are desperate for more support.”

Illustrative Quotes
Top Three Issues for the Councils

• Goal 4 (Financial and workplace security) was also listed as a 

top priority. Here, respondents commented most frequently 

on:

– Addressing the financial impacts of caregiving

– Paying family caregivers

– Creating caregiver-friendly workplaces and establishing policies such 

as paid leave

36
37

“I was not afforded the same favor as 

higher-ranking employees when members 

of their families were in need of care. There 

is a great disparity in the workplace 

between those who are extended flexibility 

in their schedule and those who are not. It 

varies depending on your position in the 

company and the level of compassion of 

your boss. If it were policy, it would be 

more equitable.“

“Supporting employed family 

caregivers is critical in terms of paid 

leave, other employment protections, 

and workplace flexibilities at the state 

and local levels and from employers.”

“As a parent of a child with a 

disability, I was unable to 

work. As a result, my SSI 

when I retire will be very 

slim.”

“Caregivers are forced to choose between staying 

employed or caring for their loved ones at home. 

When they forego full time employment, their 

ability to build wealth fades. For veteran 

caregiving families, as they age and once their 

loved one dies, caregivers are further isolated and 

fall deeper into poverty.”

“Caregivers need 

dedicated financial 

support, particularly 

those who are unable to 

work due to their 

caregiving 

responsibilities.“

“The financial impact of 

caregiving is huge... We endorse 

policy & programmatic solutions, 

with a broad definition of family 

applied.“

Illustrative Quotes
Kinship and Grandfamilies

• Systemic problem that Kinship caregivers cannot access 

the financial and other supports available to foster parents

– Kinship caregivers want access to training and respite care 

resources 

– Also need peer support to share strategies to support their roles

– Want information and referrals to resources about the conditions 

their children encounter (e.g., attachment disorders, acting out at 

school, specific disabilities, etc.)

– Need for legal help and guidance

38

“Ensuring that those of us who provide kinship care have access to the same 

training and respite resources as foster care families. We’re thrown into 

these situations with very little support. You can save costs and streamline 

the system by just opening certain doors for us. “
Other Respondent Priorities

• Respondents endorsed the cross-cutting considerations 

identified by the Council

– The strongest endorsement was for addressing direct care workforce 

issues 

– Strong support was expressed for ensuring diversity, equity, inclusion 

and accessibility

– There was also support for person- and family-centered approaches

39
Overall

40

• All components of the Strategy were identified 

as a top priority by some respondents.

• Consistent support for other areas was found:

– Raising awareness

– Caregivers as partners in healthcare and LTSS

– The need for data and research on caregiving

– The need to develop an accountability structure 

for the Strategy

– The need for strong partnerships across sectors
WHAT’S MISSING?

WHERE CAN THE STRATEGY GO FURTHER?

WHAT TOPICS OR POPULATIONS ARE EXCLUDED?

Findings from Q4 & Q5

41
Distribution of Q4 Responses by Goal

10%

8%

29%

8%

9%

7%

29%

GOALS

Awareness

Partnership & Engagement

LTSS Services & Supports

Financial & Workplace Security

Data and Research

Cross-cutting themese

Other topics

42

Note: Percentages are drawn from 451 of the 502 responses to question 4.
What Was Missing?

• Responses largely mapped responses to Q3, often 

noting specifics beyond the Strategy

– Direct care workforce

– Respite

– Caregiver training and support

– Pay family caregivers

– Diversity, equity and inclusion

– Financial impacts/reform

• In addition, respondents frequently raised the needs of 

specific populations they felt need more attention

– People with ID/DD

– Spouse caregivers

– People with mental illness

– Children who age out of the services/system

43
Overall, What Was Missing?

• Support research that evaluates the ROI for 

caregiver support programs

• Identify ways to share best practices and 

progress 

– Housing

– Right to die

44
“Throughout the strategy there is minimal 

acknowledgment of family caregivers for people 

with intellectual and developmental disabilities, 

especially children. These caregiving situations 

are unique in that they are often the longest, 

and sometimes the most intense, journeys 

family caregivers endure with compounding 

stress and challenges through the years.”

45

“....Family caregivers of adults with intellectual disability, 

who have to leave their employment, [should] accrue 

Social Security quarter hours in recognition of the work 

that they do as a family caregiver...[They should be] 

eligible, trained family members to be paid as caregivers 

through Medicaid waivers. Any financial supports 

provided to caregivers will obviate higher cost care that 

will be borne by the federal and state government.”

“The Strategy should continue to 

focus across the lifespan and more 

explicitly address the unique needs 

of caregivers of children and young 

adults with special needs, and 

adults between the ages of 18-60 

with physical and 

intellectual/developmental 

disabilities, chronic conditions, and 

mental illness, and youth 

caregivers.”

“It would be helpful to prioritize the 

huge number of recommendations. 

The casual reader might get the 

impression that everything is of 

equal importance, equal priority, 

and equally easy or difficult to 

implement.”

“Patients need

care navigation, 

links to resources, 

and advance care 

planning for what 

is coming.”

Illustrative Quotes
WHAT’S MISSING? THE FEDERAL ROLE

Findings from Q4 & Q5

46
Ensuring Accountability

• Respondents suggested ways to ensure 

accountability at the federal level 

– ACL should develop an implementation 

“dashboard” on the status of actions across 

agencies

– Create federal cross-agency task force for 

implementation, including public meetings and 

progress reports

47
Federal Actions: Work for the ACL

• Close to 80 of the comments relate to ACL

• Often with regard to expanding or 

implementing the National Strategy

• Some mention more attention to specific 

populations or programs:

– Veterans, Children with special needs, federal 

employees, tribal entities, people with rare 

diseases, low-income families, respite care, support 

for state plans, and more

48
“ACL [should] develop an 

implementation dashboard 

to educate the public about 

the implementation status 

of actions across agencies.”

“Guidance from ACL on how 

states can incorporate 

elements of the Strategy to 

align with their plans on aging 

and other caregiver initiatives, 

including support establishing 

public-private family caregiver 

coalitions, would be 

appreciated.”

49

“ACL should influence states or state 

agencies to create incentives to adopt 

the recommendations. Otherwise, 

many conservative states will ignore 

them.”

“Prioritize the need to pass legislation 

that includes provisions regarding 

education and training for family 

caregivers, pandemic preparedness, 

health literacy grants, increased shared 

decision-making...which would go a long 

way to enhance the federal support 

infrastructure for family caregivers.”

“Revise ACL grant rules (e.g, 

Dementia Capable, Lifespan 

Respite) to reduce 

administrative burdens, extend 

grant periods and increase 

...funding to allow states to 

hire staff to support grant 

work and an independent 

robust evaluation to meet 

meaningful long-range goals.”

Illustrative Quotes
Other Federal Actions Suggested

• Medicaid changes:

– Expand benefits. For example: 

• Make HCBS mandatory

• Make “Money Follows the Person” permanent

– Streamline eligibility

– Streamline spend-down rules 

– Expand ability to pay family caregivers

• Include respite as a mandatory Medicare/Medicaid benefit

• Raise Medicaid/Medicare rates for mental health services –

help deal with the mental health challenges of caregiving

• Expand use of the Medicare Supplemental Benefit for 

Chronically Ill 

• Prioritize equity across federal actions to address health 

and economic disparities

50
“[Medicare should] add a code for 

caregiver-focused health risk 

assessment. I have taken my mom to 

probably 100 doctor appointments and 

no one ever asked me about my health. 

If this is supposed to be used, it seems 

Medicare needs to educate doctors.”

51

“Expand SSBCI to individuals in fee-forservice Medicare in addition to 

Medicare Advantage.”

“Highlight the need for 

CMS to provide thorough, 

timely, and consistent 

review of all state plan 

amendments and waivers 

and waiver amendments to 

ensure compliance with 

ADA and Olmstead.”

“We suggest CMS expand the 

option to pay family members 

who provide personal care 

services under section 

1905(1)(24)...Current policy 

allows states to pay for 

extraordinary care...but 

prohibits payment under 

1905(a) This creates fractured 

delivery system and confusion 

amongst participants and their 

caregivers.”

“We ask CMS to provide states 

with the option to waive estate 

recovery for LTSS participants, 

this policy can result 

in...delaying enrollment in 

HCBS and place more strain on 

family.”

“Respite Care 

should become a 

state plan service 

under Medicaid.”

Illustrative Quotes
What Should Congress Do?

• Create a caregiver tax credit

• Immigration reform to expand the direct care workforce

• Expand benefits for working caregivers (including paid leave)

– For federal government employees, at minimum

– Nationally

• Expand funding 

– To support implementation of the National Strategy

– Create federal grants for states to implement national strategy 

goals (e.g., worker wages)

– To support LTSS more generally

• Establish a new Office of Caregiver Health at HHS

• Ensure that tribal entities are eligible for funding under 

programs supporting older adults and caregivers

52
53

“While the RAISE Strategy recommends that 

private sector employers step up and expand their 

support of employee caregivers, there is no 

parallel recommendation that the federal 

government strengthen its commitment to 

employee caregivers...Providing support to federal 

employees would reduce their burden...and signal 

a strong commitment of the federal government 

to leading efforts on behalf of caregivers.”

“Recommendations are only as good 

as the willingness of the 

Administration and Congress to 

implement them. Expecting the 

states and communities to move 

forward...without funding from the 

federal government is foolhardy.”

“...the federal government should make 

changes to the immigration system so 

that it is easier for people to come to the 

U.S. ...to serve as a caregiver for a person 

with a disability...the changing of visa 

policies to allow au pairs to serve as 

caregivers...is mentioned in the 

narrative....but not in the recommended 

federal actions. “

Illustrative Quotes
WHAT ELSE IS MISSING?

ACTIONS IMPORTANT TO IMPLEMENTATION OF THE STRATEGY

Findings from Q4 & Q5

54
Comments on Collaboration

• Strategy is “full of suggestions for collaboration,” 

but this is “easier said than done”

• Infrastructure development across federal 

agencies will be needed

• Data collection should be coordinated, not just 

across federal agencies, but also across levels of 

government

• Identify a lead agency to shepherd the caregiver 

strategy

• Create National Resource Center on Family 

Caregiving with cross-agency collaboration

55
Comments on Accountability

• Mandate annual accountability on federal progress

– ACL should develop an implementation “dashboard” on 

the status of actions across agencies

• Create a federal cross-agency task force for 

implementation, including public meetings and 

progress reports

• Prioritize equity across federal actions to address 

health and economic disparities

• Support research that evaluates the ROI for caregiver 

support programs

• Identify ways to share best practices and progress

56
Comments on State Actions

• States should move to ensure that family members can be 

paid as caregivers for their family members

• Adopt PFLM, CARE Act, and Medicaid expansion in states that 

have not yet done so

– Improve implementation of CARE

• Track state implementation of the Strategy and share best 

practices

• Include family caregivers and a wide range of communitybased organizations in state planning (and at all levels)

• Improve coordination of funding, payor of last resort, etc.

• Improve data collection on caregiver-related services and 

outcomes

57
QUESTIONS?

58
Project Team

• Eileen J. Tell

• Pamela Nadash

• Maryssa Pallis

• Shan Qu

• Marc Cohen

59
Facilitated Discussion

60
New areas the Strategy should address

1. Possible new goals and/or outcomes

2. New sectors or actions that should be addressed

61
Opportunities for the Strategy to be bolder in its 

approach to being the “roadmap for change” 

1. Additional cross-cutting considerations

2. Opportunities for legislative and regulatory changes

62
10 MINUTE BREAK

63
Federal Agency Actions Overview

64

AND MORE........
Number of Federal Actions by Goal

0

20

40

60

80

100

120

140

Goal 1 Goal 2 Goal 3 Goal 4 Goal 5

Number of Federal Actions for Each Goal

Goal 1

Goal 2

Goal 3

Goal 4

Goal 5

34% 16% 30% 6% 15%
Number of Federal Actions, 

by Responsible Agency

Entity Number Percent

ACF 14 4%

ACL 93 27%

ASPE 6 2%

AmeriCorps 18 5%

CDC 41 12%

CFPB 17 5%

CMS 30 8%

DOL 42 12%

ED 5 1%

FEMA 1 0%

HRSA 15 4%

IHS 12 3%

NIH 25 7%

SAMHSA 9 3%

VA 21 6%

Total 349 100%

Note: some actions have multiple federal agencies involved and some actions have been added 

since the Strategy has been published.
About the Care Recipient and 

Caregiver Population

Actions Relating to Care Recipient Populations*

Number Percent

All or Not Specified 196 56%

Kinship/Grandfamilies 29 8%

Medicare Beneficiaries 7 2%

Native American or Tribal 

Persons 12 3%

Older adults 26 7%

People Living with Dementia 34 10%

People with ID/DD 12 3%

Veterans 19 5%

* Groups with 5 or fewer actions not included

Actions Relating to Caregiver Populations*

Number Percent

All or Not Specified 107 30%

Employee Caregivers 15 4%

Family Caregivers 41 12%

Kinship/Grandfamily Caregivers 29 8%

Caregivers of Medicare Beneficiaries 7 2%

Caregivers of Native Americans or 

Tribal Persons 12 3%

Caregivers of Older Adults 21 6%

Caregivers of People Living with 

Dementia 34 10%

Caregivers of People with ID/DD 12 3%

Caregivers of Veterans 19 5%

* Groups with 5 or fewer actions not included
68

CONNECT WITH US
Progress Updates from 

Federal Agencies

69
We all have a role to play in supporting our nation’s caregivers.

ACL.gov/CaregiverStrategy
Not started

31

Mod.

8

In process

65

Complete

13

Increase awareness and outreach

GOAL 1

117 Federal Actions

We all have a role to play in supporting our nation’s caregivers.

ACL.gov/CaregiverStrategy
Not started

11

Mod.

3

In process

33

Complete

8

Advance partnership and engagement

GOAL 2

55 Federal Actions

We all have a role to play in supporting our nation’s caregivers.

ACL.gov/CaregiverStrategy
Not started

19

Mod.

5

In process

67

Complete

12

Strengthen services and supports

GOAL 3

103 Federal Actions

We all have a role to play in supporting our nation’s caregivers.

ACL.gov/CaregiverStrategy
Not 

started

2

In process

16

Complete

4

Ensure financial and workplace security

GOAL 4

22 Federal Actions

We all have a role to play in supporting our nation’s caregivers.

ACL.gov/CaregiverStrategy
Not started

12

Mod.

1

In process

31

Complete

8

Expand data, research, and evidence-based practices

GOAL 5

52 Federal Actions

We all have a role to play in supporting our nation’s caregivers.

ACL.gov/CaregiverStrategy
We all have a role to play in supporting our nation’s caregivers.

ACL.gov/CaregiverStrategy
Based on our discussion, your thoughts on:

1. Future presentations the councils need to hear

2. Materials and other information for your review

3. Technical assistance and support

77
Looking Ahead

78
ADJOURN

79