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advocacyRYAN WHITE PART B(continued from front)provide guidance to committees inaccomplishing work plan goals andobjectives and hire individuals to staffthe Networks and ensure theiroperation. Lead agency contracts werelast re-solicited in 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 forFunding Applications (RFA) wasfinally developed and issued in August2007. Through this solicitation, thenumber of Networks was changed from16 to 11 and their role andresponsibilities refined to betterrespond to the changing epidemic,address organizational structure,assure more geographic distribution,provide better clarification on thepurpose of the Networks and addressfunding issues and limitations. Elevennew lead agency contracts wereawarded through this competitiveprocess.How do they operate?The Network structure and operationincludes a Lead Agency, NetworkCoordinator, Program Assistant andNetwork membership. Networkactivities are guided by an ExecutiveCommittee and are carried out bystanding and ad-hoc committees thatfocus on specific local concerns.Participation and guidance providedby PLWH/A is an integral componentof the Networks. Each Network isrequired to have four standingcommittees, including an ExecutiveCommittee, Consumer InvolvementCommittee, Care CoordinationCommittee, and PolicyAdvisory/Education Committee.The program objectives of theNetworks are to:•Ensure representation on theNetwork by entities/individuals whoare representative of the fullcomplement of regional stakeholders.•Identify populations andsubpopulations of individuals andfamilies with HIV disease,particularly those experiencingdisparities in access and services andthose who reside in underservedcommunities.•Develop and implement strategies toassess service needs of people livingwith HIV disease and identifybarriers to care and gaps in services,propose solutions and, wherepossible, implement strategies tocoordinate community resources andidentify new resources.•Develop and implement mechanismsto identify emerging issues in theregion affecting services for peopleliving with HIV disease and develop acommunity response.•Develop a service plan describingpopulations living with HIV/AIDS inthe region (particularly thoseexperiencing disparities in access orservices and who reside inunderserved communities), regionalservice needs, gaps and emergingissues. The service plan must addressthe needs of families with HIV/AIDSand be updated for inclusion in theStatewide Coordinated Statement ofNeed (SCSN).•Promote consumer involvement byincreasing and retaining theproportion of consumers activelyparticipating in the Network for thepurposes of informing HIV/AIDSpolicy, sharing realities of living withHIV/AIDS, identifying gaps inservices and effecting change.•Develop, promote and implementHIV/AIDS educational programs andtrainings and/or refer providers andconsumers to trainings that result inan improved understanding of theHIV/AIDS service delivery systemand advances in care and treatment;inform stakeholders (government andcommunity, state, federal and local)of regional needs and stimulate2action to address needs.•Serve as a clearinghouse for updatedregional HIV/AIDS informationincluding information on resourcesthat are available, local and stateepidemiologic data and otherpertinent information. Facilitate flowof information to service providersand community members regardinglocal, state, and federal initiatives,resources and activities targeted tothe HIV/AIDS community.•Provide input to the Ryan WhiteStatewide Coordinated Statement ofNeed (SCSN) and participate in SCSNactivities.•Communicate and collaborate withthe AIDS Institute on a regular basisand participate in SASDC to identifyemerging needs and offer policyrecommendations.Is consumer involvement supported?Consumer involvement in theNetworks is vital. Lead agencies areexpected to promote PLWH/Aparticipation throughout all levels ofNetwork operations and must strivefor at least 25% active participation ofpersons living with HIV/AIDS withinthe Network and its subcommittees.Lead agencies are required to dedicatea portion of the Network budget tothe support and maintenance ofconsumer participation in theNetwork. These expenses can includereimbursement 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 participationinclude the provision of refreshmentsat meetings, ensuring the availabilityof translation services, theimplementation of flexible attendancepolicies due to illness or disability,and establishing convenient meetingtimes. Networks are also encouragedto develop a peer component whichmay include mentorship, stipend and
advocacyRYAN WHITE PART B(continued from page 2)other employment opportunities withthe Network. Peers can assist withadministrative duties necessary forNetwork functioning or conductoutreach to other consumers,especially in large rural areas.In large regions, transportationpresents an onerous challenge toNetwork participation. In addition toreimbursement for transportationexpenses, Lead Agencies areimplementing innovative strategies toaddress this potential barrier. Thesestrategies include developing smallerregional bodies where consumers canparticipate locally, rotating meetinglocations, and using video andteleconference equipment to ensuregeographic coverage and reachconsumers in the entire region orborough.What role can I play?There are many different waysconsumers can become involved in theNetworks. Consumers are encouragedto become members of the ExecutiveCommittee which serves as thegoverning body of the Network and isresponsible for overall Networkoperations. Consumers can also startoff by becoming members of theConsumer Involvement Committee.The ultimate goal of this committee isto promote consumer involvement inthe region, provide a venue forconsumers to share the realities ofliving with HIV/AIDS, identify gaps inservices, raise community awareness,and provide a mechanism whereconsumers can participate in thedevelopment of policies and otherstrategies to address their needs. Byparticipating on and becomingmembers of the Care CoordinationCommittee, consumers can play a vitalrole in reducing barriers to services.The Care Coordination Committee isresponsible for assessing needs,identifying barriers, developing andimplementing service plans,developing universal practices, andoffering trainings on relevant andemerging issues. Finally, consumerscan have a voice by becoming part ofthe Policy Advisory/EducationCommittee. This committee is chargedwith informing legislative, governmentand community leaders at the localand state levels of regional needs andemerging issues related to HIV/AIDS,and with promoting a coordinatedresponse to address these issues.What next?A list of the new lead agencies andNetwork regions is provided on page 6.Your active participation in theseimportant planning bodies will help toensure a comprehensive continuum ofHIV care and services throughout theState. Make your voice heard and getinvolved today! If you are notcurrently a member of a Network, orbelonged to one of the former Networkareas that changed, contact theNetwork Coordinator or Lead Agencystaff person covering your region andask for a membership application. qSURVIVING AND THRIVING(continued from front)adolescent to adult HIV health care,dealing with HIV stigma anddisclosing one’s HIV status to others.At this training, the LTI staff trainerswere joined by Shahdae Holland, anHIV+ young African American womanfrom Philadelphia, who made awonderful addition to the trainingteam. Part 2 in the series is scheduledfor the end of October, with part 3coming early in 2009.Another notable development hasbeen the increased enrollment in ourNew York City “Planning CouncilTraining” series—four workshops thatfocus on information and skills toenhance PWHA participation in theNYC Ryan White Part A PlanningCouncil and its committees. Thesetrainings are being offered againseveral times through February 2009(see the calendar on p. 5.), and areopen to any PWHA in New York Cityand Westchester, Putnam andRockland counties, even if they’venever taken an LTI training before! qIn June, Georgette Beal left 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 in her new position.3
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