HIV/AIDS ASO and CBO Stability & Sustainability

Nickie Bazell & Jacob Smith Yang
Capacity for Health
Asian and Pacific Islander American Health Forum
December 16, 2014
Capacity for Health (C4H) provides free trainings and oneon-one technical assistance to community-based
organizations and health departments
Community Based Orgs
Organizational Development
and Management
Prevention with Positives
HIV Testing
Health Departments
Organizational Development
and Management
Prevention with Positives
HIV Policy & Planning
 Describe the recent funding shifts, changes in
HIV/AIDS prevention, and treatment advances
 Discuss the current state of ASOs/CBOs in
terms of fiscal health, medical capacity,
leadership and governance
 Recommend sustainability strategies
HIV Prevention
Quotes that resonate with you and your
How does my organization reflect these
profiles, challenges, and opportunities ?
What are the lessons learned?
What are the ways in which we might need to
How do I see myself in the future of HIV/AIDS?
“Funding Cuts Force Group to End Free HIV/AIDS Testing”
Union Leader (Manchester, NH), June
“Boston Living Center Merges with Victory Programs”, March 2012
“Colorado AIDS Groups Merge to Provide Clout”
Denver Post, October 2011
“Local HIV/AIDS Agencies Fight for Life as State, Federal Aid Falls”
Press Democrat (Santa Rosa), August
“North Texas AIDS Agencies Face Funding Cuts”
CBS News, September 2011
“AIDS Groups in Ohio Merge”
The Chronicle of Philanthropy, May
“We’re Going to Be in Trouble: AIDS Groups Plan for Funding Cuts”
The Atlantic, December 2011
“South Jersey AIDS Group to Close”
Cherry Hill Courier-Post, June, 2010
“Maine AIDS Alliance Closing its Doors”, March 2011
“AIDS Agencies Scramble for Funds”
Boston Globe, August 2011
“Silicon Valley AIDS Center to Close”
San Jose Mercury News, November
“Memphis Gay and Lesbian Center’s HIV Testing Program
Suspended After State Funding Cut”
Commercial Appeal, February 2012
Funding Environment
Treatment as Prevention
Affordable Care Act
3 Domains
1. Fiscal Health
2. Medical Capacity, including HIV testing
3. Leadership and Governance
Key Features
 Participant confidentiality
 Questions pre-tested
 Report reviewed by key provider
 Spanish language surveys and interviews
Media review : 174 print articles within a Review of 154 IRS 990s: 45 organizations
5-month period
in 14 states
50-question survey: 48 organizational
Key informant interviews: 36 people
Participating ASOs/CBOs: 129
Participating States: 37 plus
Washington, D.C.
Attention to diversity: size, geography, main audience, and other considerations
 Year-end operating deficits. In nearly half of
reporting years, agencies reported a loss or
minimal surplus.
 Operating losses. 15% of agencies reported losses
for three consecutive years.
 Weak fund balances  considerable financial
 Deficits. 22.6% reported deficits in their last full fiscal year. The
highest, proportionately, was a loss of $360K on a budget of
 Almost deficits. Another 36.9%, reported performance that was
essentially neutral
 Low fund balance. 8.3% reported fund balances less than $100K
 Cash on hand. 19% of the total reported having less than $100,000
in cash and marketable notes
 Closures/Earnings. A handful on the brink of closure. On the other
end, a handful of organizations had robust earnings/assets
 Mergers. Nearly all (93%) agencies had at least considered merging
with another agency . Nearly half (43%) reported considering the
development of shared service partnerships with other agencies.
Strategies used in last 3 years to manage finances:
 14%
 8%
 5.5%
 5.5%
 5.5%
 2.7%
“Spent down reserves to cover operating
“Borrowed funds / line of credits to cover normal
“Sought advances on grants or contacts to cover
“Delayed paying bills beyond a normal period”
“Initiated ‘emergency fundraising’ to cover
“Delayed/reduced payroll”
 “There’s so much federal uncertainty now, and it’s hard on us.”
 “Funding changes have made us ask tough mission-related questions
. . . like, ‘do clients truly have the same needs they did ten years
 “We’ve merged with multiple agencies in recent years.”
 “The uncertainty of Ryan White funding is a constant worry.”
 “I don’t think about the finances. I think about the quality of
 “We’ve greatly reduced our [cash] reserves.”
 “Three years ago I wasn’t worried about our mortgage, but now I
 “Our biggest challenges is cash flow. And our biggest problem is
local government. They’re just not paying their bills on time.”
The overwhelming majority of organizations reported
some current delivery of health care services:
92% Rapid Testing
72% Medical Case Management
66% Mental Health
56% Adherence Counseling
56% Patient Navigator Services
48% STI and Other Health Screenings
35% Addiction Treatment
17% Pharmacy
14% Physician
Nearly all organizations (92%) reported the desire to initiate or
expand some form of current medical services, either directly
or through a partnership
4 Approaches
1. Creation of an FQHC or FQHC look-alike clinic
2. Partnering, with significant co-location of service delivery
and access, with an existing clinic
3. Provision of a marketable “bundle” of support services to
an existing clinic through a partnership agreement
4. Expansion and sustainability of current ancillary care
models—essentially “staying the course”
51% expressed significant interest in becoming or
partnering with a clinic
2 Models
For those planning FQHC or FQHC look-alike services or
service expansions approaches focused on:
1. an infectious disease, such as HIV and hepatitis
2. a chronic disease, especially those linked to poverty,
such as HIV or diabetes.
Most common barrier: Lack of financial resources
55% help developing financial estimates and
fundraising plans
23% help assessing the local “market” and its
specific needs
12% help defining an effective and sustainable
service mix
37% “roadmaps” or “checklists” that will guide
agency planning and action
 “We must add medical services to stay competitive!”
 “We’re going to have to engage a consultant to walk us through the
steps for establishing medical services.”
 “We must add medical services to stay competitive.”
 “We have been traditionally an HIV prevention agency. The changes
in health care financing are new for us, and we’re in uncharted
 “We’d like to become a service support arm to another entity that
can bill insurance, like our local community hospital.”
 “We are experiencing significant barriers related to our work in
‘medical home’ models—feeling ‘shut out of’ health care reform
 “We only want to provide medical services through co-location—our
board has decided we don’t need the liability.”
Strategic plans seem to address shifting environment
81% of respondents reported that their agency had a current, active
strategic plan
Lower ratings for Board Knowledge:
1 = “No
Board Knowledge
Board Knowledge
10 = “Completely
Average Score
Knowledgeable about HIV/AIDS care, services, and
Knowledgeable about HIV/AIDS public policy and financing
Knowledgeable about overall nonprofit management
 “It’s hard for me to stay current, much less do that for my board.”
 “I find that we need to continually clarify the role of the board in
terms of policy and fundraising.”
 “When I first came here there were seven board members, no board
giving, no board performance metrics. I’ve worked very hard to
change that.”
 “I’ve become convinced that board-building is critical. Our current
chair is an HR professional, and we just re-wrote all our policies and
 “We’re growing rapidly but don’t have a strategic plan.”
 “We do a training session at every monthly board meeting on fundraising.”
 “We’ve just been through a strategic planning process, but now we
need an operational plan. We need to get staff focused on program
achievement—nurture cross-silo conversation about outcomes.”
Many, but not all, organizations have struggled financially.
While some report a relatively robust financial picture, a
handful may be on the brink of closing. Many organizations
in the middle are highly vulnerable to shifts in funding.
“We’re holding our heads
above water,
but just barely sometimes.”
Nearly all organizations believed that community-based
services should be better integrated with medical services.
Many are taking steps in that direction, despite obstacles
and confusion.
“We need to provide medical
services but don’t have the
expertise, board buy-in, or
resources. It’s a steep climb.”
Significant reports of frustration in engaging/informing highfunctioning boards. Some also expressed need for senior
staff leadership development.
“Board recruitment—
getting really good people and
keeping them for the long haul—
is a continuing challenge.”
#1: Provision of assistance to effectively define, implement,
and finance the service model that will characterize the
organization’s future.
 “We need help with public relations. AIDS is not over and we need to
convince the public that that’s true.”
 “Leadership development for staff. We have to adapt to these changes,
which will require different skill sets.”
 “We need help constructing data models for evaluation, performance
monitoring, and billing. It’s getting more and more complex all the time.”
 “Some of our big fundraisers are vulnerable because they depend on so
many variables. We need help figuring out how to wean ourselves . . .”
 “We need help with planning—including operations planning.”
 “We need help navigating the new terrain of EMRs [Electronic Medical
Records]. Even the feds are confused.”
 “Designing and implementing QI and QA.”
 “We need help dealing with the legal issues of downsizing or expanding ...
the HR process. No one is talking about that.”
1. CBOs /ASOs should consider the business model that is best
for their organization and the communities it serves. For
instance, should the CBO/ASO:
A. Partner with existing clinics,
B. Expand medical services without evolving into a full clinic, or
C. Become an FQHC or FQHC look-alike clinic.
2. CBOs/ASOs should become familiar with discrete elements of
service expansion, especially:
A. Health care financing and accounting;
B. Market analysis to understand needs and market gaps, and,
C. Expansion capitalization to finance start-up services.
3. CBOs/ASOs should have a working and current knowledge of
the Affordable Care Act, Ryan White CARE Act, and other
federal programs, and should be used to inform the agency’s
strategic, business, and/or operational planning efforts.
4. Awareness of successes and challenges of peer organizations;
Emerging organizations pairing with successful organizations
5. ASOs/CBOs consider new models for earning income
6. When closing or ending an HIV program or agency – build in
ample time to plan at the beginning of the process for client’s
 Case studies of promising practices of ASOs
and CBOs surveyed – business models
Ed Tepporn of the Asian & Pacific Islander American Health Forum’s (APIAHF)
and Earl Pike served as the lead staff for this report.
Jenny Panzo, MPH (New York) and Mireille Sjoblom-Kious (Cleveland) provided
invaluable assistance in collection and analysis, as well as translation services.
The Community and CBO leaders who participated in the survey and key
informant interview process.
Graphic design and layout services were provided
by AJ Titong.
This report was supported by Cooperative Agreement Number 5U65PS001651-04 from the Centers for
Disease Control and Prevention. Its contents are solely the responsibility of the authors and do not
necessarily represent the official views of the Centers for Disease Control and Prevention.
Contact us with additional questions and support!
Nickie Bazell
Jacob Smith Yang
Capacity Building Director
[email protected]
Senior Capacity Building Director
[email protected]
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