Members Present: Aimee Barnes, Robert Oropeza, Dorothy Kleffner, Wade Flores, Randy Allgaier, Ken Pearce
Members of the Public: David Chandler, Harry Breaux, Hulda [sic], George, Jon, Phonzo, Greg Rowe, Holden Croft, Michelle Long, Dean Goodwin, Sheila
Council Staff: Jack Newby, Enrique Asis, Susan Latham, Joe Lynn
1. Welcome and Introductions
2. Purpose of Meeting
Council Members Aimee and Wade explained the nature of the Council and the role the COA committee plays.
3. What We Will Be Doing Tonight
Jack Newby, Planning Council Director, introduced staff. One group with emerging needs is 50+. The Council wants to hear from those folks tonight.
4. Review of Advocacy Project
Joe Lynn, HIV Consumer Rights Advocate, explained the purpose of the meeting
5. Large Focus Group Discussion
1. Dental services decreasing; timing, timing, timing – money spent on root canal and gold crown. Lost tooth, matter of dignity that could tip a person with health problems. Story about cat dying after being shaved.
2. Sense of well being – holistic
3. Can we deduct pet care costs from rent the way we do meds?
4. List of who provides, like a yellow pages, of all folks getting Ryan White funding
5. Economical housing consensus that it’s a big issue
6. Effects of HIV meds on body chemistry
7. Client rights
8. Need to focus not on saving lives but on the long term haul
9. Taxi vouchers, transportation
10. University of Pacific sets its institutional needs over the patients; waits long, prefer extractions, question about money made by school from students and patients – need competition, CONTINUITY OF CARE
11. Home support services, aging issues can raise the need from time to time without a constant need, how to care for an aging partner
12. Need to balance continue working against present retirement benefits, financial benefits counseling on retirement issues
13. What to do to make a difference with your day when you’re not working – importance of work
14. Concerns over future of benefits
15. Long term planning and HIV – first time heard those words in a group of PWA’s, and made the hair stand on the back of my neck
16. Treatment with respect and civility, need to have voice heard
17. Care for older folks has sexism while for younger folks have ageism
18. Home help – “I’ve named my spiders.”
19. Seamless delivery of services that takes into account intermittent capabilities of aging HIV folks
20. Is this aging or HIV? Merging gerontology and HIV care
21. Transportation needs – emergency room with broken foot and then with kidney stones – particularly in emergencies
22. Times feel acutely alone, and when it includes pain… he ends with a sigh
23. Need for POH to get better than below airline food quality
24. Emotional support groups
25. Forefront of the aging HIVers
26. No sliding scale for folks with savings
27. Money management
28. Substance abuse
6. Meal Break
7. Large Group Report Summarization
Summarized, notion that case management no longer exists, someone who could direct among the various care providers – comprehensive case management. Case managers get burned out. Impersonal treatment
8. Framing the Current Reality, Funding/Reauthorization
Jack: $40 million five years to 28 now and another 3-5 million in the next few years; further reductions as hold harmless cushion ages and is reduced – 75% needs to go to core medical services.
9. Services Important to Keep Citywide – Group Discussion
Areas that care council should concentrate on – housing, food, comprehensive case management, psychosocial support services on aids and aging, education of community on our issues that need support, mental health services, education to dispel myths around HIV, lot of ignorance on the streets homophobia, transphobia, aids-phobia, transportation services, dental services, legal services
Local government will need to hear
Most important -- Housing and food and comp case management, dental, legal has to be added
Comments about how street activism had declined
10. Prevention With Positives – Relevance to Group – Barriers to Testing
Most have experiences with providers of talking about PWP; being told by so many people that they know more than caregiver, conversations seem to be comfortable; more education with doctors and peers about how to talk about these issues
Peer rejection a real issue
T-cells and viral load has no effect on safe sex practices
Lots of folks don’t want to be tested, fear of stigma, shame, belief in vulnerability
11. Review of Survey Form and Fill-Out
Feel positive about sharing, frustration over committee/committee, talk/talk so hope something happens, forum became a support group, hope they can be used to further their aims
Aimee: Encouraged attendees to join the planning council
12. Thank You / Return Forms / Adjourn
7:44pm
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