MN HIV
Services Planning Council
Meeting Minutes for
Council Members Present:
|
Council Members Absent:
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Gilbert Achay |
Andy Ansell –
excused |
|
Osmam
Ahmed |
Lois Crenshaw –
LOA |
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Dan
Capouch |
Binta Johnson – unexcused |
|
John
Cyzon |
Andrea
Jenkins – unexcused |
|
Paul
Eknes-Tucker (co-chair) |
Francis
Mark – excused |
|
Rae
Eden Frank |
Sarah
Senseman – excused |
|
LeMonte
Graham |
Ron
Schut – excused |
|
Dean
Halland |
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Bob
Hansen |
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Randy
Hornstine |
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Patrick
Kramme |
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Jim
Lawser |
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Lee Lewis |
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Antonio Marante |
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Eric Meininger |
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Gary
Novotny |
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Susanne
Pfeil |
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|
Aaron
Keith Stewart (co-chair) |
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Gwendolyn
Velez |
|
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Willie Wesley |
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Consultant: |
Jennifer Thompson – CLEAR |
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Guests: |
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Ojuolape
Olagbaju – AIDS Project of |
Laura
Provinzino – MN Advocates for Human Rights |
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Allain
Hankey - |
Diane’s friend
and interpreter |
|
Tim
Taylor |
Henry
Keen – Resident working w/ Eric |
|
Don
Quaintance |
Judy
Valerius – RAAN |
|
Selam
Rodriquez |
Joan
Othieno |
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Debra
Riley |
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G-HAT: |
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Jonathan Hanft –
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Diane Knust -
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Julie Hanson Pérez – MDH |
Dave Rompa – DHS |
Redwan Hamza – DHS |
Eduardo Parra -
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Staff: |
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Mary Doyle |
Mary Dwyer |
The meeting began with dinner followed by member appreciation and recognition of the outgoing committee co-chairs and Paul Tucker, Planning Council co-chair. Eduardo took a picture of members present for the next edition of the newsletter.
I. Welcome and introductions; lighting of the candle
Paul called the meeting to order at
II. Review the minutes of August 9th and proposed agenda
The minutes were approved as written by unanimous consent. The agenda stands as proposed.
III. Open Forum
No one came forward to speak.
IV. Co-chair update, introduction of the proposed MOU/staff supervision change (discussion to be held in the October Planning Council meeting) - Allain
Hankey, Public Health Protection Manager,
Paul shared that a
memorandum of understanding (MOU) and staffing supervision proposal are being
presented tonight. The intention is for
all members to review the materials with further discussion at the October Planning
Council meeting.
Allain began by
describing the purpose of the MOU, which is to formalize a mutual commitment to
a strong and productive partnership between the Planning Council and
____________
Allain shared that
she has met with the Executive Committee three times to discuss development of
the MOU and finalize the proposed agreement.
There was agreement on the content of the MOU so the process moved forward. One component related to the MOU, which the
staffing agreement is referred to as Exhibit A, received a mixed response. Allain then outlined the basic components set
forth in Exhibit A regarding staffing including: staff positions and roles, staff
responsibilities, hiring, and staff supervision direction and performance
evaluation. Allain is requesting that
supervision of the Coordinator position be changed to be under the grants
management supervisor. Grantee staff,
coordinator, and Planning Council co-chairs would meet monthly to ensure that
Planning Council needs are being met.
Co-chairs would also be involved in the evaluation process for the
coordinator.
The next steps are
to review the MOU, Exhibit A, letter from Allain, letter from Paul, and the
August 25th Executive Committee meeting minutes. Discussion of all pieces will be at the
October Planning Council meeting.
Bob asked if there
has ever been an MOU –there hasn’t been a MOU in the past. Allain then gave some brief background of
staffing in the past. In the beginning consulting
staff was contracted to staff the Planning Council. Just over four years ago
V. CSAD
findings and recommendations - Joan Othieno, CSAD project
Joan began by summarizing the project goals and objectives.
Handouts of the
PowerPoint presentation were handed out to all.
The outline for Joan’s presentation is:
project goals and objectives, demonstration project sites, why focus on
African born, project components, a description of the Rapid Assessment
Response and Evaluation (RARE), system assessment components, data collection
strategies, information about interview participants, interview process, RARE
activities and participants, and system activities and participants.
The project goals
and objectives are to understand why African immigrants and refugees living
with HIV/AIDS do not seek and/or drop out of care, and to assess the HIV/AIDS
care system. The African born population
was selected because of the increase in new infections from seven cases in 1990
to 65 cases in 2002. Currently they make
up less than 1% of new infections but account for 21% of new infections.
The project
components included a Rapid Assessment Response and Evaluation (RARE) component
to assess those not in care and the CARE Systems Assessment to assess the HIV
care system. The RARE component of the
assessment included conducting interviews and focus groups with African people
living with HIV/AIDS and cultural experts who know about the community and
HIV/AIDS. The systems portion of the
assessment looked at the system with respect to comprehensiveness, capacity,
and integration, accessibility, and non-acceptability. Accessibility includes clinic locations and
hours relative to client needs.
Non-acceptability includes cultural competency and client-centeredness
of services.
Strategies used to
collect data included: socio-geo
mapping, observation, one on one interviews, and focus groups for the RARE part
of the project. When looking at the
systems aspect the project reviewed documents, observed, and conducted one on
one interviews and focus groups, which also included informal and group
interviews.
For the RARE
component, interview participants included those living with HIV/AIDS that are
out of care and/or newly diagnosed and cultural experts (including service
providers, community members, religious leaders, and young adults – those
19-29). When assessing the system,
Africans living with HIV/AIDS were interviewed, as well as, service providers
(both direct providers and administrators), the Planning Council, and grant
managers from Hennepin County, MDH, and DHS.
Joan then showed a graphic that helped to illustrate the interview
process.
The Project Team
had regular, weekly meetings where they were able to talk about issues that
came up over the course of the week and also gave an opportunity for the group
to strategize.
In focusing on the
RARE portion of the project Joan shared that the team tried to be as
representative as possible. A total of
33 interviews were conducted and eight focus groups were also conducted. With respect to the system, participants’
interviews were conducted with direct service providers and administrators
(including service providers). Two focus
groups were completed with service providers and one with the government HIV
administrative team (G-HAT). Group
interviews were also conducted (more than one person but less than six).
Selam then
presented information from the interviews and focus groups done with cultural
experts including religious leaders, service providers, and those between 19
and 29. All countries and genders were
represented. Cultural experts explored
what their beliefs were, reasons that African people don’t get into care or
stay in care, and what services are available.
According to
cultural experts beliefs about HIV include: curse from God, disease with no
cure, religious beliefs and practices (not living in accordance with God’s
will, polygamy), and cultural beliefs and practices (witchcraft). Other beliefs include: an association with promiscuity, associated
with prostitutes, some believe HIV does not exist. There are also those who believe it can be
cured by certain religious rituals (Holy water and Muslim ritual
“Wallah”). Experiences of African PLWH/A
according to cultural experts are that some may be being punished for bad
behavior, they are seen as outcasts, are not seen as responsible members of
society, and some cultural experts say they have never seen any African
PLWH/A. Family members protect those who
are living with HIV/AIDS but also often mistreat those same family
members. There is more sympathy for women
living with HIV, among the Somali, if it is know her transmission is from her
husband than there is for women from other African groups.
Reasons that
African PLWH/A don’t seek care include shame and fear of others knowing their
status. Other reasons include:
immigration status, lack of insurance, and the hopelessness in knowing there is
no cure. There are many who also lack
knowledge of the health system and prefer not to have interpreters/translators
from their own country work with them.
Many also shared that Africans do not go for testing. Selam shared information from one young
person who said he would commit suicide if he tested positive.
When talking about
services that are available for PLWH/A, cultural experts identified agencies
that provide general services rather than HIV specific services. Needs that were identified by the cultural
experts were to identify institutions that are not HIV specific which might
help reduce the stigma associated with going to an HIV specific provider, as an
example. They also suggested creating
more messages and education on how to get insurance, about services, that care
is not linked to the INS, and hope rather than stigmatization to African
PLWH/A.
Translation
continues to be an issue. For example, Swahili
is spoken in more than five countries of Africa but there are no materials
available in Swahili. Cultural experts
identified additional needs.
The role of
religious leaders in getting Africans into care include: more advocacy, more training on HIV/AIDS,
more collaboration between religious and community leaders, and more working
relationships between those folks and service providers.
Systems Assessment
When exploring the
systems of services information was gathered from those living with HIV/AIDS as
well as service providers, etc.
Individuals are dealing with isolation, secrecy, stigmatization,
mistreatment, and retaliation. Of those
interviewed most had not told anyone – exceptions were those who shared the
information with a spouse and occasionally a family member. Unfortunately there are many instances of
domestic abuse because one partner is positive but the other is not. Often there are no options for those who are
looking for support from their families and others in the community. When asked why they don’t get into care many
shared that they don’t know about the resources available, they have a fear of
others finding out, and medication takes too long to work (as well as side
effects). The fear of immigration is
another major issue that comes up.
Service providers and grant managers also identified lack of knowledge
of services as an issue for folks getting into care.
When talking about
comprehensiveness of services needing more information or having no knowledge
of services continued to be a common theme.
When talking to
service providers they said all services are available (those mainly identified
included case management, social work, housing, and food shelf) but may not be
easily accessible. There is a lack of HIV
case management within resettlement agencies.
Lack of client understanding about service eligibility is another area
raised.
African’s living
with HIV/AIDS identified transportation and employment as major needs for
services and those themes were consistent with those in care as well as though
out of care or newly diagnosed.
Service providers
said those with cultural competence do not have competency with HIV.
With respect to
integration those in care who were interviewed shared that it takes two weeks
to get referrals, they are asked the same information when they access
services, and more information on the role of providers including wait time for
services and eligibility. For those who
are out of care the majority has used limited services dealing only with
specific issues.
Service providers
- They feel that one reason that folks fall out of care is lack of
communication. Providers think there
needs to be flexibility in dealing with clients because there are often other
issues that someone may need to deal with.
Grant managers
shared that agencies with more active collaborations are more successful in
getting PLWH/A in to care. They also
identified limited interpretation services.
Planning Council
interviews said there are challenges knowing the best places to refer clients
for care, issues related to insurance are important, and there is a need to
integrate the data collected and not have duplicate reports. Joan added that duplication of reporting is
something that’s coming up a lot.
Those who are out
of care also reported that when trying to hide their status, they will make
appointments when others in the home are away so they continue to be unaware of
their relative’s HIV status.
Non-acceptability
(Cultural competency and client centeredness)
Those who are in
care cite privacy as a major issue – there is so much communication involved
with multiple contacts potentially with one provider (i.e., doc has them talk
to other medical and social service staff).
They also need
more information about what to ask for when going to a provider’s office. Cultural differences also create some
issues. Joan cited the example of
American culture expecting individuals to look at them in the eye but to
African’s that is disrespectful. This is
a dynamic that makes communication difficult.
With respect to providers gender and ethnicity make a big
difference.
For those out of
care – a few of those interviewed shared that communication from disease
investigators was challenging for newly those diagnosed. There are many questions raised when, as an
example someone from MDH calls and leaves a message, which prompts family
members to ask why and endangers confidentiality.
Discrimination
came up in a very interesting way – the system discriminates (why is there
special housing for HIV but not cancer).
This particular group of people did see much benefit to support groups,
which was different from what those in care reported. The major theme identified with respect to
agencies is that they either have the cultural competency to serve folks or the
HIV expertise to serve but never both.
With respect to
technical competency and client health literacy all of those interviewed shared
that there needs to be more information on medication, HIV, and services. For those who are out of care the issue of a
provider’s qualifications is really a factor – for example, if a doctor asks
where the patient was in terms of their treatment at the last visit, the
African born person does not trust that the doctor knows what he’s doing.
In speaking with clients those who are not in care report a lack of knowledge about services available as the reason they are not in care. For those who are in care many were diagnosed while they were sick, are still in denial, many get strength from their religious beliefs, and/or delay care if they’re not feeling sick. Service providers think that clients need more education on managing the disease and report that clients want to know about life after diagnosis as well as gain a better understanding of the role of providers.
Clients and cultural experts concur on one question asking if there are characteristics that they expect to see if someone is positive. The impression is that there are no visible signs of illness so how can someone know they’re sick.
Issues that Planning Council members raised included not having sufficient information to make informed decisions on service needs and issues related to flexibility for service provision within HRSA’s regulations.
Members then asked questions. Oju asked if weather was a reason for not getting to an appointment. Joan reported that it wasn’t but added that some of the individuals interviewed had suggested alternate hours on evenings and weekends for appointments.
Joan continued the presentation about recommendations that have come about through the process. (See lilac colored sheet for recommendations and how they were prioritized by participants in the CSAD Plan of Action work day)
After reviewing recommendations members asked a few additional questions, specifically about data (like epi numbers included) and educational resources available. Randy asked specifically about alcohol and drug use and whether that impacts the epidemic and stigma related to it. Joan shared that cultural experts think that may be an issue but providers report that folks are adherent to treatment because they don’t have substance use issues. Randy asked about the impact of faith on health status. Within the religious community there is an assumption that women have stronger faith. Redwan shared that he has been involved in this process and has seen the hard work that Joan and the rest of the team have put in to this. He believes this study will serve as a needs assessment and inform future decision-making processes for the Planning Council. He thanked Joan and her team, as well as the Planning Council for initiating this project.
VI. Committee written reports; time for questions, discussion
A. Planning and
Priorities Committee
·
ACTION
ITEM Application budget approval
Dan presented information about the budget for the application being
presented. MOTION: Dan moved Bob seconded approval of the
application budget as presented. Passed
with one abstention (Rae).
B. Community Voice Committee
·
Motion
Regarding CARE Act Reauthorization
Randy shared that Andy was going to discuss the motion made at the last
Community Voice Committee meeting. A
copy of the motion was handed out for members to review. He spoke of reauthorization that will be
coming up this year and shared that one of the areas being proposed is to
eliminate Planning Council decision-making.
Funding of core, medically necessary services would be priority. Another recommendation is to focus on rural
areas of need, which would redirect current funds from states with EMAs to
increase funding for states without EMAs.
It’s looking like reauthorization won’t come up in Congress until at
least January. NAPWA, and other national
agencies, are working on this issue. The
Community Voice Committee is recommending that the Planning Council find a
mechanism to develop a position paper, similar to the one done for ADAP. He feels it’s important to develop a unified
statement that can be used with legislators and other supporters with respect
to reauthorization.
Dave thanked Randy for forwarding this request. He also cautioned folks to be careful about
what could be rumor or speculation. Dave
suggested that modeling the ADAP ad hoc process could be problematic given the
time to address this issue and suggested that interested members could meet
with grantee and Planning Council staff.
Jonathan shared that he and Mary Doyle have discussed a modified plan,
which would be to convene one meeting to get input from members that staff
could then synthesize. Jim added that
copies of national position papers are available and have been circulated.
Randy added that he knows Andy is very passionate about this issue. Paul suggested that Andy convene a meeting
with staff and those interested.
C. Needs
Assessment and Evaluation Committee
D. Community
Participation Committee
E. Operations Committee
·
ACTION
ITEM Election of Committee co-chairs and Grievance Committee standing members
LeMonte handed out ballots to all Planning Council members. Co-chairs and grievance committee members
nominated were all approved by the Planning Council.
VII. Title II and ADAP update -Dave Rompa
Dave introduced the new DHS policy person – Debra Riley. He shared that staff were very busy over the last week and half dealing with hurricane victims. The cost share report will be available October 1.
Regarding the cost share update, of the 17 people reported on at the last meeting seven were closed and ten were not. Those seven clients took no action and did not respond to any interventions. In phase two (six to nine month delinquent payments) 32 clients have been notified and are working to get up to date with their payments. The first round of closures will take place on September 30th for drugs and October for insurance It is unclear what the circumstances are that led to non-payment for these folks.
The integrated health care grant announcement has been delayed and they hope to hear about it soon.
DHS is moving on September 30th and after the move they will attempt to get new phone numbers out. You can reach staff by calling the 800 number, which has not changed. It will impact how staff will be able to meet with people.
Medicare Part D, as he shared with the group in training last week, DHS is working on several options to help consumers. They are waiting for some legal responses and are hoping to put together a fairly good package soon.
Waitlist criteria – the full Formulary Committee will look at the recommendations one last time. DHS will review the recommendations in October, the have the DHS legal representatives look it over. Dave reiterated that this is a plan in an attempt to be prepared as a last resort option. If new strategies are developed or new information becomes available it can be modified as needed, even after implementation. The plan will be unveiled in November. The next forecast will be available in mid-November to early December.
Re: carryover money was put toward another benefit counselor. This person will be mobile and able to go to clients when needed.
VIII. Title I update - Jonathan Hanft
Jonathan shared
that they are moving forward with the carryover plan – contracts are being
processed. Dave mentioned Medicare Part
D training last week – Jonathan felt it was very successful and more than sixty
participants were there including a majority of case managers. Folks who attended the training came away
with lots of information about who to contact with questions and/or concerns.
Jonathan further
clarified core services – HRSA has developed six areas that grantees need to
ensure have resources – they are:
primary care, oral health, substance use services, mental health, and
case management
The
reauthorization proposal from the President requires that 75% of all funding to
go to essential medical services. What
is considered essential medical services has not been specifically determined
yet.
The next training
event will be the All Vendor Fair on November 10th. There will be a focus on African agencies
that are providing services. Look for
information coming soon.
Jonathan further
reported that the grantee staff is furiously working on the application so they
have not been able to attend a lot of meetings recently.
IX. Announcements, evaluation, next agenda
Debra announced
the next CAB Community Forum on September 22nd at Park House. This forum focuses on long term HIV survival
and includes partners as well.
Randy announced
the upcoming forum on Men, Sex and Meth.
Documents
distributed at or before the meeting:
·
Agenda
and minutes from the August 9th meeting
·
Written
committee reports
·
Memorandum
of Understanding (MOU) PowerPoint presentation
·
Draft
Memorandum of Understanding (MOU)
·
Draft
Exhibit A (to the MOU) regarding staff supervision
·
Action
Item – committee co-chair election
·
Action
Item – grant application budget proposal
·
Planning
Council Committee co-chairs ballot
MOTION:
Randy moved Jim seconded adjournment of the meeting. The motion
passed unanimously.
Meeting
adjourned at 9:00 p.m.