| Findings
from The State of the States in Family Caregiver Support TOP |
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Slide 1: Findings from The State of the States in Family Caregiver
Support: A 50-State Study
Presentation
to the National Advisory Committee on Rural Health and Human Services,
March 21, 2005
Kathleen
Kelly
Executive Director
Family Caregiver Alliance
March 21, 2005
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| Findings
from The State of the States in Family Caregiver Support TOP |
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Slide 2: Eighteen States are Relatively "New" to Providing
Support Services for Family Caregivers
Image: Map of the 18
states "New" to providing support services in family caregiving
They are: MT, CO, NM, IA, MO, AR, MS, LA, IL, GA, SC, WV, VT, NH,
RI, DE, SD, AL
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| Findings
from The State of the States in Family Caregiver Support TOP |
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Slide 3: Key Findings: Program Administration
- Most caregiver and
HCBS programs are administered at the state level by the State
Unit on Aging (SUA)
- About 34 States centralize
administrative responsibility for caregiver support and HCBS programs
in one state agency serving the elderly and their caregivers,
typically the SUA
- D.C. and 14 States
administer caregiver support programs through two agencies
- Typically the SUA
and the Medicaid agency
- CA and VA spread administrative
responsibility among 3+ state agencies
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| Findings
from The State of the States in Family Caregiver Support TOP |
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Slide 4: Key Findings: Program Administration
Area Agencies on Aging
(AAAs) are the most common agency to have administrative responsibility
for local programs providing caregiver support
- AAAs have responsibility
for three-fifths of the programs in this study (92 of the 150,
61%)
- Other local entities:
- non-profits (16%)
- other gov't agencies
(13%)
- county health depts.
(5%)
- county human/social
service depts. (3%)
- private for-profits
(2%)
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| Findings
from The State of the States in Family Caregiver Support TOP |
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Slide 5: Key Findings: Program Administration
- In 15 States, all
respondents agree that the state has a single entry point (SEP)
for consumers, providing better access to all HCBS programs
- In 11 of these states,
the SEP includes access to caregiver support
- In 19 States and D.C.
all respondents agree that they do not operate SEPs
- In 16 States, respondents
within the state have different perspectives
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| Findings
from The State of the States in Family Caregiver Support TOP |
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Slide 6: States are Beginning to Utilize Single Entry Points
(SEP) for all HCBS Programs and Include Access to Caregiver Support
Programs
Image: US map showing
states with SEP that have family caregiver support, states with
SEP that do not have family caregiver support, and states that do
not have SEP
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| Findings
from The State of the States in Family Caregiver Support TOP |
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Slide 7: Key Findings: Program Administration
- The organization that
most frequently functions as the SEP is the AAA (56%)
- Other SEP options
reported include:
- State agency field
offices (22%)
- County health or
human services depts. (13%)
- Non-profit agencies
(10%)
- Other gov't agencies
(10%)
- Other organizations
(7%)
- Private for-profit
agencies (4%)
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| Findings
from The State of the States in Family Caregiver Support TOP |
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Slide 8: Types of Caregiver Support Services Provided by State
Programs
Image: Table listing
the types of caregiver support services provided by state programs:
respite care is listed as number one
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| Findings
from The State of the States in Family Caregiver Support TOP |
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Slide 9: Key Findings: Services
- Respite is the service
strategy most commonly offered to support family caregivers
- Respite is available
in all 50 States + D.C.
- But the amount of
respite to family members varies substantially from state to
state and program to program within states
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| Findings
from The State of the States in Family Caregiver Support TOP |
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Slide 10: Types of Respite Care
States Offer a Variety
of Types of Respite Care
| |
n |
%** |
| In-home |
136 |
91% |
| Adult
Day Services |
131 |
87% |
| Overnight
in Facility |
113 |
75% |
| Weekend/Camp |
86 |
57% |
| Other |
17 |
11% |
Note. *N = 150. **Percentages
are based on total number of responses. Figure is based on the State
of the States in Family Caregiver Support Survey (Part 1, Question
20), National Center on Caregiving, Family Caregiver Alliance, San
Francisco, CA, 2004.
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| Findings
from The State of the States in Family Caregiver Support TOP |
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Slide 11: Caregivers Access to State Programs
Image:
1. Bar graph showing the different ways that caregivers can access
state programs. Through:
- Area Agency on Aging
(AAA) - 53%
- Toll-free numbers
- 49%
- Other Local Administrative
Agency - 46%
- Web - 23%
- State Administrative
Agency - 13%
Note. *Area Agency on
Aging. Figure is based on the State of the States in Family Caregiver
Support Survey (Part 2, Question 1), National Center on Caregiving,
Family Caregiver Alliance, San Francisco, CA, 2004.
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| Findings
from The State of the States in Family Caregiver Support TOP |
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Slide 12: Key Findings: Services
- 77% of NFCSPs report
that caregivers in their state don't have access to the same program
services, followed by state-funded programs (44%) and the Medicaid
waivers (18%)
- Under the NFCSP, only
21 States (42%) report that all of their state's AAAs offer each
of the 5 specified service components
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| Findings
from The State of the States in Family Caregiver Support TOP |
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Slide 13: Key Findings: Consumer Direction
- Most States pay families
to provide care in at least one of their state programs
- 86 out of 150 programs
(57%) in 44 States and D.C.
- Only AK, DE, MS,
NV, PA and TN no not allow payments to family members
- A higher % of Medicaid
waiver programs (74%) than NFCSPs (59%) or state-funded programs
(40%) allow payment to family members
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| Findings
from The State of the States in Family Caregiver Support TOP |
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Slide 14: Top Five Unmet Needs of Caregivers in the States
| Top
Five Unmet Needs of Caregivers in the States |
Program
responses*
n %** |
Lack
of resources to provide a range of services
|
69
|
50%
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Limited
respite care/options
|
66
|
47%
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Lack
of public awareness about caregiver issues/programs
|
38
|
27%
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Shortage
of providers (workforce)
|
23
|
17%
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| Limited
access to services in rural areas |
13
|
9%
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Note. *N = 139. **Percentages
are based on total number of responses. Figure is based on the State
of the States in Family Caregiver Support Survey (Part 2, Question
9), National Center on Caregiving, Family Caregiver Alliance, San
Francisco, CA, 2004.
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| Findings
from The State of the States in Family Caregiver Support TOP |
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Slide 15: Top 5 Challenges to Implementing Family Caregiver Support
Programs in the States
Image: Bar graph showing
the top five challenges to implementing family caregiver support
programs in the states
Data:
Inadequate funding: 64%
Lack of information and outreach to the public: 46%
Workforce shortages: 36%
Caregivers don't self-identify: 26%
Working with diverse populations: 26%
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| Findings
from The State of the States in Family Caregiver Support TOP |
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Slide 16: Conclusions
- While there is increasing
availability of publicly funded caregiver support services, there
is also great unevenness in services and service options for family
caregivers across the States and within States
- All States now provide
some explicit caregiver support services as a result of the
NFCSP
- Yet, the availability
of these services vary greatly across the U.S. due to differences
in:
- Philosophy
- Program eligibility
criteria
- Funding
- Approaches to
program design
- Administration
of services
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| Findings
from The State of the States in Family Caregiver Support TOP |
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Slide 17: Conclusions
- The NFCSP is emerging
as a key program to enhance the scope of caregiver support services
and is fueling innovation in the States, but is inadequately funded
- NFCSP has expanded
the range and scope of services to caregivers of older people
in States where caregiver services existed before the NFCSP
- In other States,
the NFCSP now serves as an important resource for services not
available previously
- NFCSP also appears
to be speeding the adoption of consumer direction in explicit
family caregiving programs
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| Findings
from The State of the States in Family Caregiver Support TOP |
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Slide 18: Conclusions
- The modest level of
NFCSP funding:
- Leaves gaps in caregiver
support services
- Results in substantial
variation in service availability across the States
- When compared to spending
for Medicaid waiver funds spent on respite care alone, the NFCSP
funding appears even more limited
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| Findings
from The State of the States in Family Caregiver Support TOP |
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Slide 19: Conclusions
- Great variation among
states and programs within states in their approach to caregiver
assessment
- But broad recognition
of the value of uniformly assessing caregiver needs and the importance
of training and technical assistance in this area
- The majority of
programs in this study assess only the person with disabilities,
not the needs and situation of the family caregiver
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| Findings
from The State of the States in Family Caregiver Support TOP |
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Slide 20: Issues for the Future
- Raise the funding
level of the NFCSP to reduce gaps in caregiver support services
and provide meaningful support to caregiving families
- Improve data collection
and reporting under the NFCSP and other state programs that provide
caregiver support services
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| Findings
from The State of the States in Family Caregiver Support TOP |
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Slide 21: Issues for the Future
- Strengthen and expand
uniform assessment of caregiver needs in all HCBS programs that
provide some component of caregiver support
- Conduct a national
public awareness campaign on family caregiving
- Invest in innovation,
promising practices and technical assistance
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| Findings
from The State of the States in Family Caregiver Support TOP |
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Slide 22: Recommendations for Support of Rural Caregivers
- Workforce shortages
across professionals and paraprofessionals require more creative
use of technology and consumer direction
- Consumer health materials
need to be modified for a diverse population and for various levels
of health literacy
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