MN HIV Services Planning Council
Planning Council Meeting Minutes
Attending:
Megan Ellingson Bob Olander Mary Dwyer
Tim O’Brien Norma Atuesta Becky Kroll
David Bergquist Linda Brandt Juan Jackson
Clarence Charles Bill Seed
Mary May Sheila Brunelle
John Whalen Sarah Rybicki
Willie Bridges Linda Brandt
Jennifer Thompson
Michelle McCafferty
Eduardo Pardo
Julie Hanson
Absent
Michelle Sims unex. Frank Guzman ex.
Sandra Leaver unex. Helen Reed ex.
Efren Tovar Leon unex. Jim Huber ex.
Ron Falcon unex.
Don Anderson unex
Debra Smith unex.
Steven Moore unex.
Nicholas Metcalf unex.
Mary Sonnen unex.
I. The meeting was called to order by Judi Marshall at 9:05 am. Introductions were made around the table.
II. Review and approval of the minutes
Minutes from the last meeting were approved with no changes. Willie Bridges so moved and David Bergquist seconded.
III. Intergovernmental Agreement Appointees Ratification
Judi reviewed the new appointees. David Berquist so moved and Linda Brandt seconded nominations for new members. They are Bob Olander - Title I, Sarah Rybicki - MATEC, and Megan Ellingson - City of Minneapolis.
IV. Welcome and introduction of new members
New council members were reintroduced.
Linda Brandt announced they just were awarded Title III Early Intervention Partner with 37 partners in greater Minnesota.
V. Co-chair updates
Funding for various services, research, etc. has always been challenging. The current demands on the government may create a strain on resources in the future. The Planning Council is struggling with managing resources. How to manage resources with care and concern is why we’re here. The work we do on this Council is very serious and very important. The work of this Council happens in committees – each of us is assigned to a committee. Judi asked that members who haven’t been able to regularly attend to please participate fully since this is the beginning of a new year.
For new people – please stop us if things go too fast. There are lots of acronyms and information so please stop us and ask. For those comfortable, please remember to stop and explain.
Committees – co-chairs need to attend Executive Committee. It’s vital for communicating with other committee chairs. Mary will be sending a list of all council members to everyone. Committees can change the schedule of meetings as needed – please communicate changes to Mary Doyle. E-mail may be a tool for all to use to communicate among committee members.
The Planning Council has determined a need for two temporary working groups. One will develop and put in place a statewide system of care and the other will be addressing where prevention and services overlap and how to link them. These two new working groups are in the process of being formed.
Working Groups update
Bob Tracy reported that the joint co-chairs for the Planning Council and the Task Force on Prevention met recently. Out of this came the development of the co-chairs for the two working groups for the development of statewide services and the plan for linkage. Bob explained that the Planning Council approved the involvement of the task force in the working groups. The work groups will be idea collectors and organizers. They are not there to replace the decision-making responsibilities of the Council or task force. The working groups will organize proposals and send them to the appropriate committee. The responsibility for organizing these groups was appointed to the–joint co-chairs. The joint co-chairs have been meeting for four years now on a quarterly basis.
They’ve identified co-chairs and have identified people to participate in the work groups. The statewide access system will be co-chaired by Dave Rompa, Bob Tracy and Kathy Brothen. Kevin Sitter, Nick Metcalf and Jill DeBoer will co-chair the linkage of services and prevention work group. Five to seven people will be appointed by the co-chairs of the Planning
Council and five to seven appointed by the Task Force on Prevention. Their primary job will be to organize the process the working group will follow. The intergovernmental staff will be involved in organizing/coordinating. You can expect a process where we will be going out to others for information.
The DHS staff will coordinate the statewide plan working group. (Access)
The Planning Council staff will coordinate the working group on the coordination of prevention and services.
The next step is recruitment of the members. The timeline will be to come back with recommendations in February – because of state strike this deadline may get pushed back, but the Planning Council needs an idea of progress before the prioritization process begins. MDH will probably using some money to hire a staff person for a year or so to facilitate meetings – one person will cover both committees.
Ken asked that everyone begin their response with their name so he knows who’s talking – thank you.
Jerry announced Keith Lentz and Steven Riendl have resigned from the Council. Steve is moving out of state and Keith has some new responsibilities in his job.
VI. Title I and II updates
Title I update
Jennifer gave an update of Title I. She, Michelle and Eduardo are working on the grant application for HRSA that’s due next week. They have RFP’s out and have mailed them out to council members. The deadline for applying for funding is November 13. Give Michelle a call with questions. Many services are out for bid right now.
There is a health disparities conference coming up – Hennepin County is holding their own on December 5th. Announcements will go out in mail and email.
Background on spending report (handout) – the Planning Council wanted more information about spending so the grantee is now planning a quarterly to report on spending. Jennifer began to explain how the report was laid out. Judi took a minute to explain the history of using service information to set priorities for funding. Jennifer continued to explain that each priority may have different sources of funding including ADAP, Title I and Title III. Title I Hennepin County fiscal year begins March 1. Title II MDH fiscal year starts April 1. Sometimes it seems there may be a delay in presenting summary information – this is due to the differences in agency fiscal years and the need to wait for MDH’s quarter to end in order to have accurate information. Generally notes are included to give clarifying information. At quarter one end we are at 20% of spending. After six months of spending the staff looks at each area to see if there is a need to reallocate money from one priority to another. The staff would bring information to support those requests if there are any.
Nutritional supplement funding includes Ensure and multivitamin – at approximately $50 per month per person. Billing takes a while so sometimes there is a delay in seeing how the spending is progressing. Bill asked about Emergency Assistance - it is at 45% already – Jennifer explained that clients often use the money early in the year. Julie (MDH) explained that each client receives $400 and they often apply for it early in the year. A review generally occurs at the six-month point – right about this time of year – if changes are necessary they would come back to the executive committee. Tim O’Brien asked what percentage of funding went underutilized last year – Jennifer reported about 9%, which is very high. Last year was an unusual year. Some of the impact had to do with changes in the system, billing took very long – the staff is working to resolve this. Some of the money was unspent from the prior year also.
Judi clarified that because of last year the council is discussing a Plan B if this occurs again so there are ideas in place. The Planning Council will include a plan for the use of any potential carryover in the prioritization plan this July.
Title II update
Julie gave the Title II update. MDH has been working on the Statewide Coordinated Statement of Need process. This document asks all CARE Act Titles to identify cross cutting issues, consider needs assessment and develop goals to address the issues. November 1st is the deadline for the report.
All Prevention Task Force related meetings have been cancelled because of the state worker’s strike.
VII. Operations update
Mary Doyle updated the council on new Planning Council staff additions. Wardell Thompson, will be doing training and recruiting of new members (we are sharing him with the Red Door Clinic) and Mary Dwyer as office staff. Barbara Simpson Epps, the consultant for the HIV+ Committee, wasn’t able to be here today.
Our website should be up any day – please pass on any information or links that you think would be helpful to include. We will also be getting an 800 number so those across the state can contact us free of charge. We’re hoping it will be running soon. We’ve also ordered a speakerphone for people to use if they’re not able to attend. Ken asked about accommodation for people with accessibility issues (i.e., poor sight, etc.). Mary will research options and bring them back to the Council.
VIII. Service Area Reviews (SARs)
Judi explained the need and rationale for SARs and expressed her pleasure at having the information provided by Juan and Becky reviewing specific service areas. This lets us know if and how services are working.
A summary of the SAR information on was handed out. Juan began by explaining where the data has come from. Tracy Sides of MDH collects the Epi data. The other data is provided by service providers – the bubble sheet is used (CLRS data). The third source is data collected by service providers from clients using outcome forms – on page two. The fourth source is consumer satisfaction surveys. The last source is comprehensive needs assessment – interviews inquiring about met or unmet needs.
Becky began by explaining the primary medical care SAR – mountains of information have been collected – this should help organize the information by service area. It includes who is using the service, their profile and if they improve or not – there are some differences among groups. It is important to note that not everyone who is positive is using all of the services.
The services profile shows more clear information than the Epi profile. There are differences in the way data is collected that can be confusing. For example in terms of ethnicity, sometimes the provider makes an assumption about the client’s ethnic group and reports it as fact. The client may not self-report in the same way. Juan used the example of the number of American Indian clients underrepresented in Epi - please keep that in mind when reviewing the data.
Information is reviewed by service area – not provider. The grantees are the only ones who receive specific information about agency evaluations.
Linda Brandt clarified that each of the classification (bubble, etc.) includes information for any client who receives a service whether it’s one service or many.
Juan went on to explain how the data was prepared. The data collection for this service area started in July 2000, when they had 46 respondents and again in July 2001, when data for 58 clients was collected. For the most part, baselines of the CD4 counts have improved. 200 and below is the definition of AIDS. Becky pointed out that they look at the service area as a whole. They also look at changes for each individual – to track how many people have a change in the direction we want to see (2 out of 3). In looking at target groups in the service area of Primary Care we haven’t seen huge changes. In Case Management this is very different.
Clarification questions were fielded from council members. David Bergquist mentioned that based on what he’s heard that CD4 count isn’t really indicative of actual health – other factors make this a very complex issue. CD4 data alone doesn’t give you an accurate measure. Bob Olander expressed concern for why this measure was picked if it has low value. Jennifer clarified that federal funding mandates we use this measure. Discussion continued – Juan stated that they would continue to work with service providers to modify questions and data that’s collected. We are not trying to look at as a snapshot – over time we will have more information. As for CD4 that measure is used by providers, hospitals and others for tracking over time. We are looking at a small number and have just gotten the second round of information – a year from now we should be able to view report as having more statistical significance. Judi clarified that this is a system that’s just starting – we need to continue to evaluate over time.
On viral load – the information is much the same. We will use the term change in the intended direction from here on out to describe movement in the desired direction (since numbers often go down or up depending on measure looking at).
It was decided to table discussion of meds until another meeting – people want to have enough time to really discuss and review.
IX. Committee updates
HIV+: Bill Seed provided an update – the HIV+ Committee will be meeting at Aliveness at 12:30 today – identifying new members and establishing a calendar are the priorities. Open invitation was put out to people attending the forum.
Planning and Priorities: Sheila Brunelle reported that the Planning and Priorities Committee is updating the work plan from last year. The main focus is getting information for priority setting.
Needs Assessment and Evaluation: Judi reported the Needs Assessment and Evaluation Committee met and reviewed both areas (primary care and medication adherence) service reviews. They also worked on developing questions related to medical care quality that will be added to the next consumer care survey. Recommendations will be presented to HIV+ committee for ratification. They started by looking at the areas that they had more information on and moving on the areas that they don’t have much information on. They’ll also be looking at other areas where they don’t necessarily have outcome data on but have other information to look at.
Community Participation: Clarence reported that they met on roles and responsibilities – asked that they get as much participation from the other committees so as not to duplicate information that other committees are working on. Judy clarified that HIV+ and Planning and Priorities met jointly to discuss coordination of services.
Operations: Jerry presented a written report. On October 5th – new member orientation began.
X. Forum
Mary Doyle welcomed everyone to the Forum. She introduced Juan Jackson who gave a presentation about the flow of money. He began with taxpayers and followed the flow of money through to Hennepin County and other grantees to service providers for HIV services. HRSA mandates that 33% of planning council must be HIV+ used to be 25% but people living with HIV and advocates have effected this change. Hennepin County writes grant proposal covering needs assessment, evaluation, demographics and information about needs both met and unmet. Service providers then submit proposals to the County (grantee) to provide services. Every time money moves the person who moves the money asks are you going to use this money to help people who are HIV+ and living with AIDS. Services should address needs.
Mary encouraged participants to let she or Judi know if they are interested in being part of the council. New members will be joining in April. She also let them know that committee participation is valuable as well. After attending three committee meetings, new attendees will be members and receive all the mailings of the committee.
Summary:
The services deemed most accessible and most important by the participants through rotating brainstorming were:
1. Case management,
2. Primary care
3. Complimentary care,
4. Insurance, housing, medications and non-traditional services
Primary care is a high priority but the council doesn’t generally fund it because the state is more able/capable of handling funding (i.e., Medicare, etc.). The council works closely with other organizations so that funding can be put to the best use.
Complimentary care providers were discussed – four in a three state area. Aliveness provides the majority of services – insurance generally doesn’t cover those particular services. Eduardo clarified that the other agencies that provide these services don’t apply for grant money available.
Ken asked about when the priority list was established. Mary Doyle clarified it was done two years ago – members then vote on how they want the resources used. Ken stated that he didn’t remember questions about complimentary care and it’s impact. Eduardo clarified that all of the areas defined as priorities scored very closely but had to be ranked and voted on.
Someone else mentioned that by cutting complimentary care we are actually increasing other expenses (primarily medical) in effect burning out the system.
Ken also pointed out that complimentary care money got “lost” last year – carry over money that didn’t end up getting used. Mary clarified that this was carryover money with stipulations that hinder use in areas where there may be need.
Michelle said there isn’t money in the budget for comp care in the current budget but that could change as the budget is finalized.
Another issue raised was the fact that greater Minnesota has also been “bumped off the list”.
Feedback was given that questions asked were leading – Mary clarified that the questions were designed to learn about the perception of accessibility to care in the community. The questions were designed to be fair and make the playing field even. Invitations were passed through agencies for them to share with people who receive services to attend the forum.
Further discussion came about the design of the forum – frustration was expressed over having to pick priorities. There was recommendation to have more forums in out state Minnesota to include those who have transportation issues. Issues that come up for the council are how to address the needs of those affected in the state – ongoing battle. $4 million sounds like a lot of money but it isn’t enough to provide all the Planning Council might want to provide.
Much conversation occurred about the $500,000 in excess money that was not spent last year. Linda Brandt expressed her concerns and shared some of the opinions of the council. Lyle mentioned that in 1999 complimentary care was important but then got cut in 2001 – all feedback was positive, from health care providers and clients themselves so why was it cut? Mary clarified that the decisions are tough to make and that we have said the current budget needs to fund things that the Federal government did not previously require.
Someone else recommended looking at whom had the money, why it didn’t get spent and figure out how to fix it. Another concern was the prioritizing that was done seems to be a done deal but we’re hearing that it could change. Reality is that we’ll probably get less in light of the world today. In reality the HIV community is saying that complimentary care really has a higher priority than what has been communicated to the council and others. These services allow those dealing with HIV/AIDS to have a higher quality of life – even one visit a month gives many so much move livability, including ability to work and function more normally and with less pain, without using more meds.
How does the general community find out about meetings if they are not receiving services? Mary explained the decision making process for where the ad was placed and also stated that Lavender was too cost prohibitive – we want funding used more efficiently then in advertising. Our communication network tends to be through the agencies we fund. Much discussion was given to getting information out to the greater population, especially out state Minnesota.
Frustration was expressed because there is a general theme that deaths are going down – the perception of this group was that this information is downplayed by the medial. People are still dying and have frustration about how that is portrayed.
Eduardo shared his position from both a personal and professional standpoint – expressing his previous role as a Council member and the obstacles that they run up against. Government makes much of these decisions – those who go up against them need to be savvy and play the game – we value the input of those affected and encourage continued involvement. Mary reiterated that we are trying to make the best decisions that we can with the resources we have.
It was suggested that we include an email address spot for participants so we can mass message people. We passed the sign up sheets around for people to add that information. Mary Dwyer will create an email database for this purpose from the information collected. Another participant suggested the group take responsibility by getting meeting information prior to leaving today so they can leave with the schedule for the next three months.
Michelle McCafferty shared the information that if Aliveness does loose the comp care money they will work with them to try to find a way to fund comp care services. Participants want to know about the meeting and will show up so the council can see the seriousness of the issues. When things seem to be going okay, people tend to not participate. When something seems to be going wrong, we come out to fight. Observation that council members left prior to discussion of the forum was mentioned – many felt that the council would have benefited from being present to hear this conversation.
Meeting adjourned at 1:10 p.m.