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a d vo c a c y le a d in g lin e s - Cicatelli Associates Inc.

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Peop<strong>le</strong> Liv<strong>in</strong>g With AIDS/HIVLeadership Tra<strong>in</strong><strong>in</strong>g InstituteA Program of <strong>Cicatelli</strong> <strong>Associates</strong>, <strong>Inc</strong>.505 Eighth Avenue, Suite 1601New York, NY 10018212 594 7741 fax 212 629 3321thecirc<strong>le</strong>Fall/W<strong>in</strong>ter 2008, N° 25<strong>le</strong>ad<strong>in</strong>g l<strong>in</strong>es ad<strong>vo</strong>cacy outreach community<strong>le</strong>ad<strong>in</strong>g l<strong>in</strong>esSURVIVING AND THRIVING!by John HatchettWelcome to another issue ofThe Circ<strong>le</strong>. Along witheconomic crises and the f<strong>in</strong>alphase of a hugely important nationa<strong>le</strong><strong>le</strong>ction, it’s been a very busy time forthe LTI program s<strong>in</strong>ce our last issue,and there’s a lot of <strong>in</strong>formation wewant to share with our community.First, we’re very excited to announcethe LTI’s first-ever promotional video!It’s only 3 m<strong>in</strong>utes long, but it<strong>in</strong>troduces peop<strong>le</strong> to the LTI and<strong>in</strong>cludes images of LTI staff, CABmembers and some graduates. Executiveproducer for the video was our ownCAB member G<strong>in</strong>a Healy from New YorkCity; videographer Stephen Dirkes andphotographer Tal Shpantzer coproducedand donated their time andta<strong>le</strong>nt (plus a lot of equipment!) to theproject. The result can be viewed onthe Emmy-award-w<strong>in</strong>n<strong>in</strong>g web sitescribemedia.org’s Report<strong>in</strong>g AIDS page(www.scribemedia.org/shows/report<strong>in</strong>gaids),as well as on the LTI web page(www.cicatelli.org/lti). Many thanks toG<strong>in</strong>a, Tal and Stephen!Another excit<strong>in</strong>g development thissummer was the design and delivery ofthe LTI’s first-ever <strong>le</strong>adership workshopfor HIV+ young peop<strong>le</strong>. N<strong>in</strong>eteen youngadults, ages 17-25, took part <strong>in</strong> a 3-daytra<strong>in</strong><strong>in</strong>g <strong>in</strong> August. They came togetherfrom all areas of the state to participate<strong>in</strong> the first of a 3-workshop series, todiscuss the PWHA self-empowermentmovement, HIV health care & selfmanagementskills, transition<strong>in</strong>g from(cont<strong>in</strong>ued on page 3)ad<strong>vo</strong>cacyRyan White Part BHIV Care Network Initiativeby Humberto Cruz, AIDS Institute Director andGeorgette Beal, Director Ryan White Care Network InitiativeWhat are RW HIV Care Networks and what purpose do they serve?Ryan White HIV Care Networks were established <strong>in</strong> New York State <strong>in</strong> 1991 toimprove the availability and organization of health care and support services for<strong>in</strong>dividuals with HIV/AIDS and their families. The Networks are local associationsof health care providers, community-based organizations, community <strong>le</strong>aders, andpersons <strong>in</strong>fected and affected by HIV/AIDS. The mission of the Ryan White Part BHIV Care Networks is to promote a coord<strong>in</strong>ated community response thatresults <strong>in</strong> improved access to care and supportive services for those <strong>in</strong>fectedwith HIV/AIDS. The vision of the Networks is a comprehensive cont<strong>in</strong>uum of highquality services that is responsive to the needs of peop<strong>le</strong> <strong>in</strong>fected with HIV/AIDS.Although amendments to the CARE Act <strong>in</strong> 1996 elim<strong>in</strong>ated the requirement thatstates establish a system of consortia, New York State Department of Health AIDSInstitute cont<strong>in</strong>ues to support the concept and fund<strong>in</strong>g of Care Networksthroughout the state. It recognizes the importance of the ro<strong>le</strong> of localities <strong>in</strong>identify<strong>in</strong>g and address<strong>in</strong>g regional needs and the value of the Networks as amechanism for community <strong>in</strong>put and a <strong>vo</strong>ice for <strong>in</strong>dividuals liv<strong>in</strong>g with HIV/AIDS.Why were the Networks changed?The AIDS Institute contracts with Lead Agencies across the state to provideprogrammatic, adm<strong>in</strong>istrative and fiscal oversight of Networks. These Lead Agencies(cont<strong>in</strong>ued on page 2)LTI Community Advisory BoardHank Albrecht Michel<strong>le</strong> Lopez*Lynn Atwood Jesus MaldonadoVictor Benadava Victor Mart<strong>in</strong>ezRob<strong>in</strong> Bronner Russel<strong>le</strong> Mil<strong>le</strong>r-HillJuanita Carter-Ful<strong>le</strong>r Kim Nichols*Gerald DeYounge Mark NowakDenise Drayton Jairo Pedraza*Billy FieldsSallie Perryman*G<strong>in</strong>a HealyG<strong>le</strong>n PhillipLuis Lespier*charter memberAIDS Institute StaffDan TietzProgram StaffJohn Hatchett DirectorPetra Berrios Deputy DirectorGregory Cruz Tra<strong>in</strong>erAanchal Dhar Program Coord<strong>in</strong>atorThe PWA LTI is a program of <strong>Cicatelli</strong> <strong>Associates</strong> <strong>Inc</strong>., supported by a unique collaboration between theNew York City Department of Health and the New York State Department of Health, AIDS Institute.This news<strong>le</strong>tter was supported by Grants Nos. H89HA00015 18 and X07HA00025 18 from the U.S. HealthResources Services Adm<strong>in</strong>istration (HRSA). These grants are funded through Part A and Part B of the RyanWhite Treatment Modernization Act of 2006 through the New York State Department of Health, AIDSInstitute. Its contents are so<strong>le</strong>ly the responsibility of <strong>Cicatelli</strong> <strong>Associates</strong> <strong>Inc</strong>. and do not necessarilyrepresent the official views of the funders.credits


ad<strong>vo</strong>cacyRYAN WHITE PART B(cont<strong>in</strong>ued from front)provide guidance to committees <strong>in</strong>accomplish<strong>in</strong>g work plan goals andobjectives and hire <strong>in</strong>dividuals to staffthe Networks and ensure theiroperation. Lead agency contracts werelast re-solicited <strong>in</strong> 1995. The need tore-solicit the Network Initiativepresented an opportunity to assessthe impact and effectiveness of theNetworks and to build upon theirstrengths and successes. A Request forFund<strong>in</strong>g Applications (RFA) wasf<strong>in</strong>ally developed and issued <strong>in</strong> August2007. Through this solicitation, thenumber of Networks was changed from16 to 11 and their ro<strong>le</strong> andresponsibilities ref<strong>in</strong>ed to betterrespond to the chang<strong>in</strong>g epidemic,address organizational structure,assure more geographic distribution,provide better clarification on thepurpose of the Networks and addressfund<strong>in</strong>g issues and limitations. E<strong>le</strong>vennew <strong>le</strong>ad agency contracts wereawarded through this competitiveprocess.How do they operate?The Network structure and operation<strong>in</strong>cludes a Lead Agency, NetworkCoord<strong>in</strong>ator, Program Assistant andNetwork membership. Networkactivities are guided by an ExecutiveCommittee and are carried out bystand<strong>in</strong>g and ad-hoc committees thatfocus on specific local concerns.Participation and guidance providedby PLWH/A is an <strong>in</strong>tegral componentof the Networks. Each Network isrequired to have four stand<strong>in</strong>gcommittees, <strong>in</strong>clud<strong>in</strong>g an ExecutiveCommittee, Consumer In<strong>vo</strong>lvementCommittee, Care Coord<strong>in</strong>ationCommittee, and PolicyAdvisory/Education Committee.The program objectives of theNetworks are to:•Ensure representation on theNetwork by entities/<strong>in</strong>dividuals whoare representative of the fullcomp<strong>le</strong>ment of regional stakeholders.•Identify populations andsubpopulations of <strong>in</strong>dividuals andfamilies with HIV disease,particularly those experienc<strong>in</strong>gdisparities <strong>in</strong> access and services andthose who reside <strong>in</strong> underservedcommunities.•Develop and imp<strong>le</strong>ment strategies toassess service needs of peop<strong>le</strong> liv<strong>in</strong>gwith HIV disease and identifybarriers to care and gaps <strong>in</strong> services,propose solutions and, wherepossib<strong>le</strong>, imp<strong>le</strong>ment strategies tocoord<strong>in</strong>ate community resources andidentify new resources.•Develop and imp<strong>le</strong>ment mechanismsto identify emerg<strong>in</strong>g issues <strong>in</strong> theregion affect<strong>in</strong>g services for peop<strong>le</strong>liv<strong>in</strong>g with HIV disease and develop acommunity response.•Develop a service plan describ<strong>in</strong>gpopulations liv<strong>in</strong>g with HIV/AIDS <strong>in</strong>the region (particularly thoseexperienc<strong>in</strong>g disparities <strong>in</strong> access orservices and who reside <strong>in</strong>underserved communities), regionalservice needs, gaps and emerg<strong>in</strong>gissues. The service plan must addressthe needs of families with HIV/AIDSand be updated for <strong>in</strong>clusion <strong>in</strong> theStatewide Coord<strong>in</strong>ated Statement ofNeed (SCSN).•Promote consumer <strong>in</strong><strong>vo</strong>lvement by<strong>in</strong>creas<strong>in</strong>g and reta<strong>in</strong><strong>in</strong>g theproportion of consumers activelyparticipat<strong>in</strong>g <strong>in</strong> the Network for thepurposes of <strong>in</strong>form<strong>in</strong>g HIV/AIDSpolicy, shar<strong>in</strong>g realities of liv<strong>in</strong>g withHIV/AIDS, identify<strong>in</strong>g gaps <strong>in</strong>services and effect<strong>in</strong>g change.•Develop, promote and imp<strong>le</strong>mentHIV/AIDS educational programs andtra<strong>in</strong><strong>in</strong>gs and/or refer providers andconsumers to tra<strong>in</strong><strong>in</strong>gs that result <strong>in</strong>an improved understand<strong>in</strong>g of theHIV/AIDS service delivery systemand advances <strong>in</strong> care and treatment;<strong>in</strong>form stakeholders (government andcommunity, state, federal and local)of regional needs and stimulate2action to address needs.•Serve as a c<strong>le</strong>ar<strong>in</strong>ghouse for updatedregional HIV/AIDS <strong>in</strong>formation<strong>in</strong>clud<strong>in</strong>g <strong>in</strong>formation on resourcesthat are availab<strong>le</strong>, local and stateepidemiologic data and otherpert<strong>in</strong>ent <strong>in</strong>formation. Facilitate flowof <strong>in</strong>formation to service providersand community members regard<strong>in</strong>glocal, state, and federal <strong>in</strong>itiatives,resources and activities targeted tothe HIV/AIDS community.•Provide <strong>in</strong>put to the Ryan WhiteStatewide Coord<strong>in</strong>ated Statement ofNeed (SCSN) and participate <strong>in</strong> SCSNactivities.•Communicate and collaborate withthe AIDS Institute on a regular basisand participate <strong>in</strong> SASDC to identifyemerg<strong>in</strong>g needs and offer policyrecommendations.Is consumer <strong>in</strong><strong>vo</strong>lvement supported?Consumer <strong>in</strong><strong>vo</strong>lvement <strong>in</strong> theNetworks is vital. Lead agencies areexpected to promote PLWH/Aparticipation throughout all <strong>le</strong>vels ofNetwork operations and must strivefor at <strong>le</strong>ast 25% active participation ofpersons liv<strong>in</strong>g with HIV/AIDS with<strong>in</strong>the Network and its subcommittees.Lead agencies are required to dedicatea portion of the Network budget tothe support and ma<strong>in</strong>tenance ofconsumer participation <strong>in</strong> theNetwork. These expenses can <strong>in</strong>cludereimbursement for transportationand/or child care expenses, supportfor attendance at domesticconferences, the development of peermentorship programs and/or otherpeer stipend programs. Otherstrategies that may be employed toensure active consumer participation<strong>in</strong>clude the provision of refreshmentsat meet<strong>in</strong>gs, ensur<strong>in</strong>g the availabilityof translation services, theimp<strong>le</strong>mentation of f<strong>le</strong>xib<strong>le</strong> attendancepolicies due to illness or disability,and establish<strong>in</strong>g convenient meet<strong>in</strong>gtimes. Networks are also encouragedto develop a peer component whichmay <strong>in</strong>clude mentorship, stipend and


ad<strong>vo</strong>cacyRYAN WHITE PART B(cont<strong>in</strong>ued from page 2)other employment opportunities withthe Network. Peers can assist withadm<strong>in</strong>istrative duties necessary forNetwork function<strong>in</strong>g or conductoutreach to other consumers,especially <strong>in</strong> large rural areas.In large regions, transportationpresents an onerous chal<strong>le</strong>nge toNetwork participation. In addition toreimbursement for transportationexpenses, Lead Agencies areimp<strong>le</strong>ment<strong>in</strong>g <strong>in</strong>novative strategies toaddress this potential barrier. Thesestrategies <strong>in</strong>clude develop<strong>in</strong>g smal<strong>le</strong>rregional bodies where consumers canparticipate locally, rotat<strong>in</strong>g meet<strong>in</strong>glocations, and us<strong>in</strong>g video andte<strong>le</strong>conference equipment to ensuregeographic coverage and reachconsumers <strong>in</strong> the entire region orborough.What ro<strong>le</strong> can I play?There are many different waysconsumers can become <strong>in</strong><strong>vo</strong>lved <strong>in</strong> theNetworks. Consumers are encouragedto become members of the ExecutiveCommittee which serves as thegovern<strong>in</strong>g body of the Network and isresponsib<strong>le</strong> for overall Networkoperations. Consumers can also startoff by becom<strong>in</strong>g members of theConsumer In<strong>vo</strong>lvement Committee.The ultimate goal of this committee isto promote consumer <strong>in</strong><strong>vo</strong>lvement <strong>in</strong>the region, provide a venue forconsumers to share the realities ofliv<strong>in</strong>g with HIV/AIDS, identify gaps <strong>in</strong>services, raise community awareness,and provide a mechanism whereconsumers can participate <strong>in</strong> thedevelopment of policies and otherstrategies to address their needs. Byparticipat<strong>in</strong>g on and becom<strong>in</strong>gmembers of the Care Coord<strong>in</strong>ationCommittee, consumers can play a vitalro<strong>le</strong> <strong>in</strong> reduc<strong>in</strong>g barriers to services.The Care Coord<strong>in</strong>ation Committee isresponsib<strong>le</strong> for assess<strong>in</strong>g needs,identify<strong>in</strong>g barriers, develop<strong>in</strong>g andimp<strong>le</strong>ment<strong>in</strong>g service plans,develop<strong>in</strong>g universal practices, andoffer<strong>in</strong>g tra<strong>in</strong><strong>in</strong>gs on re<strong>le</strong>vant andemerg<strong>in</strong>g issues. F<strong>in</strong>ally, consumerscan have a <strong>vo</strong>ice by becom<strong>in</strong>g part ofthe Policy Advisory/EducationCommittee. This committee is chargedwith <strong>in</strong>form<strong>in</strong>g <strong>le</strong>gislative, governmentand community <strong>le</strong>aders at the localand state <strong>le</strong>vels of regional needs andemerg<strong>in</strong>g issues related to HIV/AIDS,and with promot<strong>in</strong>g a coord<strong>in</strong>atedresponse to address these issues.What next?A list of the new <strong>le</strong>ad agencies andNetwork regions is provided on page 6.Your active participation <strong>in</strong> theseimportant plann<strong>in</strong>g bodies will help toensure a comprehensive cont<strong>in</strong>uum ofHIV care and services throughout theState. Make your <strong>vo</strong>ice heard and get<strong>in</strong><strong>vo</strong>lved today! If you are notcurrently a member of a Network, orbelonged to one of the former Networkareas that changed, contact theNetwork Coord<strong>in</strong>ator or Lead Agencystaff person cover<strong>in</strong>g your region andask for a membership application. qSURVIVING AND THRIVING(cont<strong>in</strong>ued from front)ado<strong>le</strong>scent to adult HIV health care,deal<strong>in</strong>g with HIV stigma anddisclos<strong>in</strong>g one’s HIV status to others.At this tra<strong>in</strong><strong>in</strong>g, the LTI staff tra<strong>in</strong>erswere jo<strong>in</strong>ed by Shahdae Holland, anHIV+ young African American womanfrom Philadelphia, who made awonderful addition to the tra<strong>in</strong><strong>in</strong>gteam. Part 2 <strong>in</strong> the series is schedu<strong>le</strong>dfor the end of October, with part 3com<strong>in</strong>g early <strong>in</strong> 2009.Another notab<strong>le</strong> development hasbeen the <strong>in</strong>creased enrollment <strong>in</strong> ourNew York City “Plann<strong>in</strong>g CouncilTra<strong>in</strong><strong>in</strong>g” series—four workshops thatfocus on <strong>in</strong>formation and skills toenhance PWHA participation <strong>in</strong> theNYC Ryan White Part A Plann<strong>in</strong>gCouncil and its committees. Thesetra<strong>in</strong><strong>in</strong>gs are be<strong>in</strong>g offered aga<strong>in</strong>several times through February 2009(see the ca<strong>le</strong>ndar on p. 5.), and areopen to any PWHA <strong>in</strong> New York Cityand Westchester, Putnam andRockland counties, even if they’venever taken an LTI tra<strong>in</strong><strong>in</strong>g before! qIn June, Georgette Beal <strong>le</strong>ft the AIDSInstitute to serve as the Senior VicePresident for HIV/AIDS GrantsManagement for the United Way.The PWA community throughoutNew York State would like to thankGeorgette for all her work and supportof the LTI program, and we wish hermuch success <strong>in</strong> her new position.3


ALL TRAINED UP ANDNOWHERE TO GO?There are many chances to useyour LTI experience to helpour communities plan,strategize and set priorities forservices for PWHA. Also, every regionof the state has a Ryan White Part BHIV Care Network, and severalregions are also Ryan White Part Adesignated EMAs or TGAs, with theirown Plann<strong>in</strong>g Councils and PWHAAdvisory Groups. If prevention isyour passion, check out the city orstate Prevention Plann<strong>in</strong>g Groups.In other words, there are lots ofopportunities for our <strong>in</strong><strong>vo</strong>lvement <strong>in</strong>different k<strong>in</strong>ds of groups all aroundNew York State. All of these groupsdepend on our contributions andexpertise as PWHA, and some areactively recruit<strong>in</strong>g members right now!P<strong>le</strong>ase directly contact any of the groupsbelow for more <strong>in</strong>formation or forschedu<strong>le</strong>s of their open public meet<strong>in</strong>gs.DUTCHESS COUNTY HIV SERVICESPLANNING COUNCILCall: (845) 452-8805Contact: Chris Leewww.hivplann<strong>in</strong>gdutchess.org<strong>in</strong>fo@hivplann<strong>in</strong>gdutchess.orgNASSAU/SUFFOLK HIV HEALTHSERVICES PLANNING COUNCILUnited Way of Long IslandContact: Jennifer Coup(631) 940-3716jcoup@unitedwayli.orgNEW YORK CITY HIV HEALTH ANDHUMAN SERVICES PLANNING COUNCILCall: (212) 788-2734Staff Liaison: Darryl Wongdwong@health.nyc.govTRI-COUNTY RYAN WHITE PART ASTEERING COMMITTEEContact: Tom PetroTel: 914-813-5047tjp1@westchestergov.comNEW YORK STATE HIV PREVENTIONPLANNING GROUP (PPG)General Number: (518) 473-8484Staff Liaison: Barry WalstonRyan White Part B HIV Care Network DirectoryREGIONBROOKLYNBRONXCENTRAL NEW YORK(14 counties: St. Lawrence,Jefferson, Lewis, Herkimer, Oneida,Oswego, Onondaga, Cayuga,Cortland, Madison, Chenango,Broome, Tioga, Tompk<strong>in</strong>s)FINGER LAKES(9 counties: Monroe, Wayne,Ontario, Liv<strong>in</strong>gston, Yates, Seneca,Steuben, Schuy<strong>le</strong>r, Chemung)HUDSON VALLEY(7 counties: Sullivan, Ulster,Dutchess, Orange, Putnam,Rockland, Westchester)LONG ISLAND(2 counties: Nassau, Suffolk)MANHATTANNORTHEASTERN NEW YORK(17 counties: Frankl<strong>in</strong>, Cl<strong>in</strong>ton,Essex, Hamilton, Warren, Fulton,Saratoga, Wash<strong>in</strong>gton, Montgomery,Schenectady, Rensselaer, Schoharie,Albany, Greene, Columbia, Otsego,Delaware)QUEENSSTATEN ISLANDNETWORK CONTACT INFORMATIONGail GreenidgeK<strong>in</strong>gs County Hospital CenterTel: 718-245-2820 Fax: 718-735-4165Email: gail.greenidge@nychhc.orgSocrates CabaMontefiore Medical CenterTel: 718-231-3296 Ext. 25 Fax: 718-655-3763Email: Scaba@montefiore.orgStephen E. WaldronCoord<strong>in</strong>ator, Central New York HIV Care NetworkTel: 315-472-8099 Ext. 15 Fax: 315-472-8033Email: sewaldron@cnyhsa.comPat ZachariasF<strong>in</strong>ger Lakes Health Systems AgencyTel: 585-461-3520 Ext. 102 Fax: 585-461-0997Email: patzacharias@flhsa.orgBarbara BennetAIDS Related Community Services (ARCS)Tel: 914-785-8275 Fax 914-785-8265Email: bbennet@arcs.orgAnthony SanchezUnited Way of Long IslandTel: 631-940-3735 Fax: 631-940-2551Email: asanchez@unitedwayli.orgJose Mart<strong>in</strong> Garcia OrduñaUnion Sett<strong>le</strong>ment Association, <strong>Inc</strong>.Tel: 212-828-6143 Fax: 212-360-5914Email: jorduna@unionsett.orgMichael BroderickNortheastern New York HIV Care NetworkTel: 518-689-0880 Fax: 518-689-0753Email: michaelb@caresny.orgRobert SteptoeAIDS Center of Queens County (ACQC)Tel: 347-952-4943 Fax: 718-739-2552Email: Rsteptoe@acqc.orgKar<strong>in</strong>a RyanCommunity Health Action of Staten IslandTel: 718-808-1414 Fax: 718-808-1391Email: kar<strong>in</strong>.ryan@sihealthaction.orgNEW YORK CITY DOH HIV PREVENTIONPLANNING GROUP (PPG)Call: (212) 788-4180Staff Liaison: L<strong>in</strong>da Batt<strong>le</strong>Email: dohmhppg@health.nyc.govWESTERN NEW YORK4Andrew KienerAIDS Network of Western New York, <strong>Inc</strong>.Tel: 716-882-7840 Fax: 716-882-2139Email: aidsnet@pce.net


MEET THE CAB, GREET THE CABVictor Benadava – New York CityWork Affiliation: Holistic HealthCounselor; Reiki MasterAd<strong>vo</strong>cacy and VolunteerIn<strong>vo</strong>lvement:• Volunteer at GMHC <strong>in</strong>the kitchen and as anADS (AcupunctureDetoxification Specialist) forthe last coup<strong>le</strong> of years; past Co-chairof the GMHC Client Advisory Board• Board Member of Aspir<strong>in</strong>g Dreams <strong>in</strong>Louisiana• Member of Today Help EthiopiaCorp., a non-profit organization tohelp PWA’s <strong>in</strong> Ethiopia• Member of NAPWA (NationalAssociation of Peop<strong>le</strong> With AIDS)• Member of the New York CityPrevention Plann<strong>in</strong>g Group (PPG)• Member of the New York StateConsumer Advisory Committee• Member of the New York HIV Healthand Human Services Plann<strong>in</strong>gCouncil Consumers Committee andalternate Plann<strong>in</strong>g Council memberHobbies/<strong>in</strong>terests: I love horses,sports, Holistic Health, laugh<strong>in</strong>g,eat<strong>in</strong>g, enjoy<strong>in</strong>g life.Gerald DeYounge – New York CityWork Affiliation: Inactive ArmyReservesAd<strong>vo</strong>cacy and VolunteerIn<strong>vo</strong>lvement:• Co-Chair of the BklynHIV Care Network andSteer<strong>in</strong>g Committee ofPositive HealthManagement Office of WyckoffHeight Medical Center (WHMC)• Peer Educator for Family ServicesNetwork and WHMC• Won a scholarship to attend theNational Conference on AfricanAmericans and AIDS from PositiveHealth Management Office of WHMC• Volunteer for God’s Love We Deliveron SundaysHobbies/<strong>in</strong>terests: S<strong>in</strong>g<strong>in</strong>g, danc<strong>in</strong>g,passion for Astronomy and Egyptology,read<strong>in</strong>g and watch<strong>in</strong>g old filmsPWA LEADERSHIPTRAINING INSTITUTEA Program of <strong>Cicatelli</strong> <strong>Associates</strong> <strong>Inc</strong>.“Self-Management: Becom<strong>in</strong>g Your Own HealthCare Ad<strong>vo</strong>cate”(open to any HIV+ New York State resident)This tra<strong>in</strong><strong>in</strong>g is designed for <strong>in</strong>dividuals who wantto better manage their HIV health care. Medical <strong>in</strong>formation,communication skills build<strong>in</strong>g and peer support are comb<strong>in</strong>ed <strong>in</strong>an <strong>in</strong>teractive educational experience created by and for PWHA.3 Albany—October 22-24, 2008 (W-F)3 New York City—November 12-14, 2008 (W-F)January 14-16, 2009 (W-F)3 Long Island—November 20-22, 2008 (Th-Sa)3 Hudson Val<strong>le</strong>y—December 4-6, 2008 (Th-Sat)NYC “HIV Plann<strong>in</strong>g Council” Tra<strong>in</strong><strong>in</strong>g Series(open to HIV+ residents of NY City, and Westchester,Rockland and Putnam Counties)Lunchprovided!Lunch andMetro Cardsprovided!These four workshops expla<strong>in</strong> the federal Ryan Whiteprogram and its mandate for communities to identifylocal needs and set priorities for fund<strong>in</strong>g. The tra<strong>in</strong><strong>in</strong>gsare designed to build know<strong>le</strong>dge and skills for PWHA who arecurrently active <strong>in</strong> the NYC HIV Plann<strong>in</strong>g Council’s processes, aswell as those who are <strong>in</strong>terested <strong>in</strong> <strong>le</strong>arn<strong>in</strong>g more about the Counciland its opportunities for PWHA participation.3 Community Plann<strong>in</strong>g: Focus on Plann<strong>in</strong>g Councilsand Policy BodiesNovember 13-14 (Th-F), January 8-9, 2009 (Th-F)3 Understand<strong>in</strong>g DataNovember 24-25 (M-Tu), January 22-23, 2009 (Th-F)3 Sett<strong>in</strong>g Priorities & Distribut<strong>in</strong>g FundsNovember 20-21 (Th-F), January 29-30, 2009 (Th-F)3 Work<strong>in</strong>g Effectively <strong>in</strong> GroupsOctober 27-29 (M-W), December 8-10 (M-W)February 18-20, 2009 (W-F)To register for tra<strong>in</strong><strong>in</strong>gs, or for more <strong>in</strong>formation,p<strong>le</strong>ase call Aanchal Dhar at 212-594-7741 ext. 2315


6“All LTI Graduates thatserve on the Board of Directorsand/or a Community Advisory Boardfor a not-for-profit organization areencouraged to register for thetra<strong>in</strong><strong>in</strong>gs listed below.”


nationalFEDERAL MEDICAIDCUTS LOOMINGRepr<strong>in</strong>ted from New York AIDS Coalition(NYAC), News From DC, July 30, 2008Readers of “News from DC” mayrecall NYAC highlight<strong>in</strong>g seriousprob<strong>le</strong>ms with the BushAdm<strong>in</strong>istration’s proposed Medicaid regulations.The impact of the Medicaidregulations on New York State alone wasprojected to exceed $1.5 billion <strong>in</strong> thefirst year. As a result of activism fromthe HIV/AIDS, disability, and Medicaidcommunity, Congress passed a one-yearmoratorium on six of the seven proposedregulations. However, Congress did notstop one regulation, which impacts onMedicaid reimbursement for hospitaloutpatient and community based services.The fiscal impact of this oneregulation on state Medicaid programs,<strong>in</strong>clud<strong>in</strong>g New York’s, will be significant.The Governor’s office predictsthis regulation will costNew York State at <strong>le</strong>ast$350 million dollars.The rema<strong>in</strong><strong>in</strong>g regulation is extremelycomp<strong>le</strong>x, but <strong>in</strong> summary would appearto limit Medicaid reimbursement forhospital outpatient and communitybasedservices to only those servicescovered by Medicare, and ensure thatreimbursement is similar to theMedicare rate. This would essentiallyprohibit federal Medicaid match<strong>in</strong>g dollarsfor services that Medicare does notcover, such as methadone ma<strong>in</strong>tenanceservices, renal dialysis, family plann<strong>in</strong>gservices, and some mental retardationand developmental disability services,to name a few. Consider<strong>in</strong>g thatMedicaid and Medicare generally serveentirely different groups of <strong>in</strong>dividualswith very different needs, NYAC isextremely puzz<strong>le</strong>d beh<strong>in</strong>d the logic ofmatch<strong>in</strong>g up Medicaid with Medicarereimbursement. It makes no sense.Governor Paterson’s Wash<strong>in</strong>gton DCoffice recently generated a memo thatdescribes the impact of this oneMedicaid regulation on New York. TheGovernor’s office predicts this regulationwill cost New York State at <strong>le</strong>ast $350million dollars. These regulations would(cont<strong>in</strong>ued on page 8)Medicaid Managed Care for Peop<strong>le</strong> With HIVMay Be Mandatory SoonRepr<strong>in</strong>ted from New York AIDS Coalition (NYAC), News From Albany July 30, 2008HIV/AIDSad<strong>vo</strong>cates have begun to <strong>le</strong>arn that the [NY]State Department of Health may soon announceplans to beg<strong>in</strong> requir<strong>in</strong>g persons liv<strong>in</strong>g with HIV/AIDS on Medicaid to enroll<strong>in</strong> managed care plans. Up until now, persons liv<strong>in</strong>g with HIV have beenexempt from requirements to enroll <strong>in</strong> either an HIV Special Needs Plan (HIVSNP) or standard managed care. This process may beg<strong>in</strong> as early as January2009, only six months away. From what NYAC has <strong>le</strong>arned, mandatoryenrollment of PLWHAs on Medicaid <strong>in</strong>to managed care plans will beg<strong>in</strong> <strong>in</strong>New York City first. Whether it will expand beyond NYC is not known yet.However, this news is alarm<strong>in</strong>g for a number of reasons, and NYAC has severalquestions/concerns (and this list is not exhaustive):• It elim<strong>in</strong>ates PLWHAs choices <strong>in</strong> Medicaid and narrows their health careoptions.• To date, the State Health Department has provided no <strong>in</strong>formation on howmany HIV specialists are <strong>in</strong> each of the Medicaid managed care planslicensed across the State. There are approximately 67,000 persons liv<strong>in</strong>gwith HIV who rely on Medicaid for their health care <strong>in</strong> NYS; do each of thestandard managed care plans have enough (if any) HIV specialists to treatall of these <strong>in</strong>dividuals?• In areas with high concentrations of persons liv<strong>in</strong>g with HIV, are thereenough providers and HIV providers <strong>in</strong> each of the plans to care for all thehuge <strong>in</strong>flux of PLWHAs?• As persons are auto-enrol<strong>le</strong>d <strong>in</strong>to managed care plans, what will happen tobeneficiaries who suddenly <strong>le</strong>arn they can no longer see the doctor(s) thatthey have been rely<strong>in</strong>g on for years for care? Will each of the plans beprepared to guide each and every beneficiary to appropriate providersexperienced <strong>in</strong> HIV?• What ro<strong>le</strong> will the HIV SNPs play <strong>in</strong> this mandatory enrollment process? Willpersons only be auto-assigned to standard managed care plans, or will theHIV SNPs also be <strong>in</strong>cluded <strong>in</strong> any auto-enrollment process?• What steps will the State Health Department take to monitor the plan’sperformance for PLWHAs?• Will NYS DOH provide resources to HIV service organizations so that a widelypublicized public awareness campaign and outreach effort will be conductedto ensure that all PLWHAs are aware of their options before the autoenrollmentprocess beg<strong>in</strong>s?NYAC is coord<strong>in</strong>at<strong>in</strong>g with a number of other organizations to hold acommunity forum on this issue. Date, time and location will be providedshortly. We are expect<strong>in</strong>g to hold this forum sometime the week of September8th (week follow<strong>in</strong>g Labor Day). q7


FEDERAL MEDICAID CUTS(cont<strong>in</strong>ued from page 7)nationalresult <strong>in</strong> direct reductions <strong>in</strong> fund<strong>in</strong>g toprograms all across the state, <strong>in</strong>clud<strong>in</strong>gto programs at NYC Health and HospitalsCorporation, Narco Freedom, PlannedParenthood, Suffolk County HealthDepartment, Hous<strong>in</strong>g Works, BroomeCounty Health Department, AIDSCommunity Health Center, DaytopVillage, F<strong>in</strong>ger Lakes Migrant Health CareCenter and many, many more organizations.It would also put <strong>in</strong> jeopardy theState’s proposed reforms to Medicaid,<strong>in</strong>clud<strong>in</strong>g proposed adjustments to reimbursementsfor outpatient services.NYAC and other Medicaid ad<strong>vo</strong>cacygroups are hop<strong>in</strong>g that a mechanism(such as a must pass budget bill) canbe found to pass a Congressional moratoriumon this regulation as well.However, the White House has beenparticularly stern on this issue and willfight any efforts to overturn this regulation.This is an issue that we need topay particular attention to; <strong>in</strong> thecom<strong>in</strong>g weeks and months NYAC maybe call<strong>in</strong>g upon its members to makecalls and write <strong>le</strong>tters on this issue. qNOW ACCEPTING APPLICATIONS FOR NEW LTI PEER MENTORSFROM NEW YORK CITY, LONG ISLAND AND THE HUDSON VALLEY!LTI Peer Mentors are HIV-positive <strong>in</strong>dividuals who provide encouragement andsupport to graduates of the LTI’s “Self-Management: Becom<strong>in</strong>g Your Own HealthCare Ad<strong>vo</strong>cate” tra<strong>in</strong><strong>in</strong>g for 6 months follow<strong>in</strong>g their graduation from thecourse. Mentors are <strong>vo</strong>lunteers, and they report to the LTI Mentor Supervisor.QUALIFICATIONS•Be a graduate of the LTI Core OR have attended at <strong>le</strong>ast one 2-3 day LTI tra<strong>in</strong><strong>in</strong>g<strong>in</strong> the past 6 months•Demonstrated ability to self-manage his/her own HIV health care•Ab<strong>le</strong> to attend 4-day mentor tra<strong>in</strong><strong>in</strong>g and participate <strong>in</strong> monthly supervision viate<strong>le</strong>phone and/or <strong>in</strong> person•Availab<strong>le</strong> for 2-3 contacts per month with each mentee (no more than 3 permentor), both <strong>in</strong> person and by te<strong>le</strong>phone•Aware of the major issues and concerns fac<strong>in</strong>g PWHAs, especially regard<strong>in</strong>g HIVhealth care•Energetic and motivated, with excel<strong>le</strong>nt <strong>in</strong>terpersonal and communication skills•Know<strong>le</strong>dgeab<strong>le</strong> about how to access <strong>in</strong>formation resources <strong>in</strong> the community•Prepared to discuss basic <strong>in</strong>formation about HIV/AIDS health care (labs, meds,etc.) <strong>in</strong> a one-on-one discussion•Ab<strong>le</strong> to work with diverse populations (i.e. MSM, gay, bisexual, transgender,substance users, various ethnicities and religions, etc.)•Capab<strong>le</strong> of discuss<strong>in</strong>g sexuality and related issues with comfort and confidence•Committed to achiev<strong>in</strong>g the program’s mission as part of a team•Some availability on even<strong>in</strong>gs and weekends may be requiredIf you fit the above and are <strong>in</strong>terested <strong>in</strong> becom<strong>in</strong>g an LTI Peer Mentor, p<strong>le</strong>asecontact Gregory Cruz or Aanchal Dhar for more <strong>in</strong>formation: 212/594-7741 or,outside New York City, toll-free at 866/792-5323. qLiv<strong>in</strong>g Positively <strong>in</strong> the 21st CenturyMark Nowak, (<strong>le</strong>ft) LTI CAB member for Western NY,presents an award for “Liv<strong>in</strong>g Positively <strong>in</strong> the 21stCentury” to fellow LTI graduate Andy Kiener, ExecutiveDirector of the Western NY HIV Care Network. The awardwas given to “an outstand<strong>in</strong>g PLWA nom<strong>in</strong>ated by his peers.”zzMark presents Dr. Gus Birkhead, former ExecutiveDirector of the AIDS Institute, with an award recogniz<strong>in</strong>gDr. Birkhead’s contributions to the New York State PLWAcommunity. Poz magaz<strong>in</strong>e editor Regan Hofmann wasalso recognized, but was unab<strong>le</strong> to attend due to illness.8

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