Hearing Wrkgrup December 10, 2007 Henric Mental Health West (Wdman Rad) Attendance: Beth Tlley Technical Assistance Cnsultant, Infant & Tddler Cnnectin f Virginia Ruth Friersn Early Hearing Detectin and Interventin Fllw Up Crdinatr Pat Wiley Care Cnnectin fr Children Melinda Smyth Educatr f the Deaf, Hanver Ann Hughes Cnsultant, Partnership fr Peple with Disabilities Ellen Rlader Service Crdinatr, Educatr, Infant & Tddler Cnnectin f Shenandah Sarah Peters, SLP, Infant & Tddler Cnnectin f Henric Leslie Hutchesn Prince, Department fr the Deaf and Hard f Hearing Cri Hall, Service Crdinatr, Special Instructr Hanver Cunty Wanda Walker, System Manager, Suthside Debbie Pfeiffer, Specialist, Department f Educatin Sandra Wdward, Prgram Directr, CCC, Virginia Hearing Aid Lan Bank Dana Yarbrugh, Partnership fr Peple with Disabilities The minutes frm the Octber 10 meeting were apprved. The new Virginia Department f Health Early Hearing Detectin and Interventin prgram manager will start January 10. Review f Advisry Cmmittee Meeting The cmmittee is reviewing the infrastructure and has decided t establish subcmmittees. This wrkgrup will becme ne f the subcmmittees. (Ellen asked that the name f this wrkgrup be changed. This will be addressed when the wrkgrup becmes a subcmmittee). Subcmmittee meetings d nt require public ntice. One f the subcmmittees will fcus n funding. Anther will fcus n fllw-up. A family subcmmittee was als discussed t facilitate family input fr review f dcuments, cmmunicatin with legislatrs, etc. The Advisry Cmmittee will cntinue this discussin at the next Advisry Cmmittee Meeting (February 8, 2008). Decisins will be made abut which functins (including implementatin f the Jint Cmmissin n Infant Hearing recmmendatins) belng t which subcmmittees. Membership f the Advisry cmmittee is als being reviewed. Cde f Virginia Regulatins regarding hearing detectin and interventin must be reviewed nw (every fur years) and revised as/if needed. Ruth and ther VDH staff members are wrking t integrate recmmendatins frm JCIH int the regulatins. Ruth has identified a place in the regulatins where the requirement fr family-t-family supprt culd be added r strengthened. (12 VAC 5 80-95) A telecnference has been scheduled by Susan Tlusty t wrk n the regulatins. Sarah Peters will participate alng with Ruth and thers frm VDH. Guide By Yur Side Dana reprted that the Guide By Yur Side Prgram has just cmpleted the first year, which has been cnsidered a pilt. Evaluatin f GBYS is nt available due t lw survey return rate. Thse surveys that have been returned prvide very psitive feedback abut the prgram. The surveys are nw being given t families sner in the prcess with the hpe that there will be a Hearing Wrkgrup Meeting 12-10-07 Page 1 f 8
greater return. Results f the Giving the survey earlier t parents and will cmpile that t have available fr legislatrs. Jessee Gerges stays in tuch with guides. The guides als have cnference calls. The imprtance f prviding feedback (psitive and negative) t the prgram managers was stressed. Budget and Funding: GBYS and Hearing Aid Lan Bank Virginia Department f Health funding (thrugh grants) fr the Guide By Yur Side Prgram and the Hearing Aid Lan Bank will end August 31, 2008. Dana discussed the budget fr the GBYS. GBYS was riginally funded fr ne fiscal year, but due t a late start with matching families (January 2007), the prgram had leftver funding fr part f the current fiscal year. The prjected budget fr this year was less than the cst f the prgram. A budget additin requested thrugh VDH was nt funded. Visa cards have been purchased t simplify the reimbursement t the Family Guides. Abut 65-75% f families Ruth talks with are interested in a family match. This requires an annual budget f apprximately $57,000. Debbie Pfeiffer reprted fr Phyllis Mndak that the Department f Educatin culd prvide $57,000 ut f 619 (preschl) funds. Dana will talk with Phyllis abut details. $20,000 is needed t finish this fiscal year and $57,000 is needed next year. Dana reminded the grup that the Partnership is a temprary hme fr this prgram. They are willing t keep the prgram fr a third year. Ptential funding surces fr this prgram were discussed. Mney may be available thrugh the Deaf and Blind Prject, thugh it wuld change the nature f the prgram since it wuld need t include children wh are blind as well as deaf. At this pint, Hands and Vices is nt interested in spnsring (funding) this prject due t ther pririties. VDH waiting fr annuncement abut grants t see if there is the pssibility f applying fr grant funding thrugh Health Resurces and Service Administratin (HRSA). Regarding a permanent hme fr the GBYS prgram, there is still hpe that at sme pint, the Department fr the Deaf and Hard f Hearing may be able t spnsr this prgram. In mst states, the hme is anther state agency, thugh there is a cnnectin t Hands and Vices. Other ptins suggested fr cnsideratin include the Arc f Virginia, PEATC (Parent Educatinal Advcacy Training Center), the Family Invlvement Prject (thrugh Arc f Virginia), and Nrthern Virginia Resurce Center. Sarah prvided infrmatin abut ptential grant surces including: R.J. Reynlds Fundatin. CBS Caremark Trust Dminin Fundatin grants up t $15,000. Rbins Fundatin Lawrence Fundatin challenge grants Carmax Hearing Wrkgrup Meeting 12-10-07 Page 2 f 8
There are different deadlines fr the varius grants. Dana said that Bill Tinsley at the Partnership fr Peple with disabilities culd lk int the grants that have been identified and prvide recmmendatins abut what t pursue. Dana will reprt back at the next meeting. The Partnership may nt be able t apply fr sme f the grants. Hearing Aid Lan Bank (HALB) The Hearing Aid Lan Bank has served 151 clients. This prject started with a budget f $17,000, which DID NOT include the cst f purchasing the aids and warranties. Many f the warranties fr the riginal hearing aids and FM systems have expired. There is a nw a need t purchase new hearing aids and FM systems. There are 78 hearing aids and 37 FM systems in the Hearing Aid Lan Bank. Care Cnnectin fr Children (CCC) is nt a viable surce fr funding the Hearing Aid Lan Bank because the HALB des nt meet CCC incme criteria fr recipients. $52,000 is needed frm September 2008 t August 2009. Debbie reprted that Phyllis Mndak has indicated that DOE can fund this fr ne year. It may be pssible t prvide funding in the future, but it must be determined n a year-by-year basis. Sandra will cmmunicate with Phyllis and Debbie t prvide the scpe and services and budget fr this funding request. A questin was raised abut dnatins f hearing aids. In rder fr dnatins t be usable, there must be a cmpany that is willing t refurbish the hearing aid. This is nt readily available. In additin, dnated hearing aids are nt always the type f aid that is needed. Hwever, Barry Strasnick, member f the Early Hearing Detectin and Interventin Advisry Cmmittee is wrking with a fundatin called the CHEAR fundatin which is cnsidering starting a prgram t refurbish hearing aids. Debbie will cmmunicate with Barry abut whether HALB culd be a part f CHEAR. It was reprted that Delegate Hargrve has expressed interested in supprting legislatin fr funding hearing aids. The way t pursue this may be thrugh a budget prpsal thrugh VDDHH. There is nt time t pursue this fr the 2008 General Assembly. Hwever, this is smething that shuld be lked int nw fr next year. Ann will talk with the Hands and Vices members t see if they are interested in pursuing this (since it needs t cme frm families). It was reprted als, that Senatr Blevins has a cnnectin with the CHEER Fundatin. There is the pssibility that funding culd be sught thrugh the CHEER Fundatin and/r that families culd apprach Delegate Hargrve and Senatr Blevins t supprt legislatin fr funding fr bth Guide By Yur Side and the Hearing Aid Lan Bank. Supprt thrugh Legislatin In rder t have legislative supprt fr funding, several things must ccur: Legislatrs willing t supprt bills Delegate Hargrve Senatr Blevins (pssibly) Individuals/grups wh can lbby fr legislatin (nt state emplyees) Hands and Vices. Ann will talk with members in the January meeting. Speech and Hearing Assciatin f Virginia. Sarah will talk with the Vice President fr Legislative Affairs t see if SHAV wuld be willing t pursue funding fr GBYS and HALB Budget t supprt (ex. inclusin f funding fr prjects in DDHH budget) Hearing Wrkgrup Meeting 12-10-07 Page 3 f 8
Data need; effectiveness reprts, cst, etc. JCIH recmmendatins Pssible Cde revisin t strengthen requirement fr family t family supprt Evaluatin f Lss t Fllw UP in State EDHI Prgrams: Findings frm the Virginia EDHI Prgram Hands and Vices Ann reprted that Hands and Vices meets every 2 nd Saturday. Ann will talk with members at the January meeting abut pursuing legislatin fr funding. Develpment f Pririties and Wrkplan based n Review f CDC and JCIH Recmmendatins Each f the JCIH recmmendatins was reviewed. Past, current and ptential future wrkgrup activities were identified fr each recmmendatin. 1. All families f infants with any degree f bilateral r unilateral permanent hearing lss shuld be cnsidered eligible fr early interventin services. Early Interventin fr Infants and Tddlers with Hearing Lss and Their Families (fact sheet) was develped and disseminated t all lcal Part C systems, as well as psted n the Infant & Tddler Cnnectin website. Peridic reminders are prvided thrugh the Infant & Tddler Cnnectin Technical Assistance Update and thrugh individualized technical assistance. There have nt been recent instances f families reprted t Ruth that they were tld their child was nt eligible. Ruth will add a questin abut this in her fllw up calls with families. Ruth reprted that sme families dn t understand hw a very yung child can be evaluated r what services culd be prvided t a very yung child. The fllwing respnse was suggested: Evaluatin includes nt nly assessment f the child s develpment, but als assessment f family needs. Hearing babies listen fr the first year befre they learn t prcess language and talk. Yur baby may r may nt be right n target develpmentally. Early interventin supprts and services can help yu learn abut all f yur cmmunicatin ptins, including amplificatin s that yu learn hw t cmmunicate effectively with yur baby and help him/her develp language, cgnitin (thinking skills) and cmmunicatin. Early interventin can als prvide yu with infrmatin abut resurces t supprt yur baby s develpment and t prvide supprt t yur family including cnnectins with ther families if yu desire. 2. There shuld be recgnized central referral pints f entry that ensure specialty services fr infants with cnfirmed hearing lss. There are central pints f entry (CPOE) fr each f the 40 lcal systems. The CPOEs are verseen by lcal system managers wh have been educated abut infants and tddlers with hearing lss. Each lcal system is required t have persnnel knwledgeable in assessment and interventin fr infants and tddlers with hearing lss and their families. The statewide tll free number fr the Infant & Tddler Cnnectin f Virginia is anther way fr families t be ruted t the lcal systems. The EDHI Fllw Up Crdinatr als serves as a link t the early interventin system Hearing Wrkgrup Meeting 12-10-07 Page 4 f 8
3. Early Interventin services fr infants with cnfirmed hearing lss shuld be prvided by prfessinals wh have expertise in hearing lss, including educatrs f the deaf, speech-language pathlgists, and audilgists. Extensive effrts have been made t increase the capacity f Virginia s prviders t serve infants and tddlers wh are deaf r hard f hearing and their families Infrmatin abut training pprtunities is prvided thrugh email t all 40 systems and thrugh the Infant & Tddler Cnnectin Technical Assistance Update Resurce materials (print infrmatin, videtapes/dvds, etc.) have been prvided t all 40 lcal systems 7 sets f resurces were purchased and are kept at the DDHH library fr lan t any lcal system There is at least ne sessin n early interventin fr children wh are deaf r hard f hearing at each Infant & Tddler Cnnectin Annual Cnference Mre extensive trainings are ffered peridically thrugh the Department f Educatin, by private prviders and thrugh the Partnership fr Peple with Disabilities (funded thrugh VDH and DOE), including the SKI-HI training and the INSITE training. In additin nline training curses have been made available t prviders. Cnsultants thrugh the Virginia Netwrk f Cnsultants (VNOC) are available fr prviders wrking with infants and tddlers wh are deaf r hard f hearing and their families. We d nt knw hw many prviders there are t serve infants and tddlers wh are deaf r hard f hearing thrugh the Infant & Tddler Cnnectin f Virginia, nr d we knw the level f knwledge, skills and abilities (KSA) f thse wh are serving these children. Ideas t cnsider in additin t current strategies were brainstrmed: Develp a framewrk t help rganize the training pprtunities fr individuals utilize the ASHA/JCIH list f cmpetencies and prvide infrmatin/ resurces/ references abut hw t attain the KSA fr each cmpetency. Lk at the 2007 JCIH Psitin Statement and the 2007 ASHA reprt t see if there are changes t the cmpetencies identified in 2000. Cnsider a meeting f all individuals in Virginia wh wrk with infants and tddlers wh are deaf r hard f hearing and their families Cnsider develpment f a list-serve fr prviders Cnsider cmmunities f practice fr prviders. (The grup cautined that there might nt be the manpwer resurces t undertake this nw). Prvide nline access t resurces. This might be pssible thrugh VNOC. Prvide displays at multiple cnferences including the Infant & Tddler Cnnectin f Virginia annual cnference, physician cnferences, Speech and Hearing Assciatin cnferences, etc. Pst the fact sheet n TTAC Online (www.ttacnline.rg). (Ann) Pst cnferences and resurces n TTAC Online. Several wrkgrup members are able t pst infrmatin. Private cnferences cannt be psted, but infrmatin abut rganizatins (such as the website Cchlear Americas HOPE Prgram) can be psted. 4. In respnse t a previus emphasis n natural envirnments, the JCIH recmmends that bth hme-based and center-based interventin ptins be ffered. Beth will fllw up t learn the intent behind this recmmendatin. Hearing Wrkgrup Meeting 12-10-07 Page 5 f 8
Review f Recmmendatins frm the Evaluatin f Lss t Fllw UP in State EDHI Prgrams: Findings frm the Virginia EDHI Prgram The recmmendatins n pages 5 and 6 f the executive summary were reviewed. The grup discussed hw each recmmendatin culd/wuld be addressed and als brainstrmed pssible strategies fr many f the recmmendatins. The Virginia Department f Health will play the lead rle in respnding t the recmmendatins. Many activities have been implemented since the reprt was written, s sme f the recmmendatins may already be met. Activities planned r in prcess include: VDH is wrking t increase the number f audilgists trained, equipped and willing t be apprved audilgists fr the EDHI prgram. DMAS has revised reimbursement t make it mre financially feasible fr audilgists t participate. 90% f ne VDH staff persn s time is devted t identifying/wrking with medical hme fr infants and tddlers wh are deaf r hard f hearing and their families. VDH has develped (but nt yet printed) psters fr physicians, midwives and OB ffices Training fr physicians is a VDH gal. Funding is needed VDH has a display table at the pediatric physician cnferences Hspital brchure that was apprved by the Advisry Cmmittee has a place in it fr the child s ear specific hearing screening results t be recrded The grup agreed that ne f the recmmendatins, attentin shuld be given t (the) cmprehensin and appeal f educatinal materials is relevant t this grup s wrk and shuld be kept in mind as materials are develped and disseminated. The recmmendatin that educatin and cunseling activities wuld extend beynd the immediate family t significant thers will be addressed by the Advisry Cmmittee, but is als ften addressed thrugh the supprts and services prvided in the Infant & Tddler Cnnectin. In additin, a fact sheet culd be develped fr disseminatin by family guides thrugh the GBYS prgram. Activities/strategies brainstrmed include: Members prvide sessins at physician and ther prfessinal cnferences Man a display table at all cnferences that include prfessinals wh need t be knwledgeable abut detectin and interventin fr infants and tddlers wh are deaf r hard f hearing. Cnferences identified tday include Birdsng the third weekend in April and PEDS at the Beach in August. Members are t email Beth infrmatin abut cnferences including name f cnference, lcatin, dates and cntact peple. Beth will cmpile the list fr the next meeting; strategies will be discussed at future meetings. Submit an article fr the newsletter f the Virginia Chapter f the American Academy f Pediatrics (thrugh Clleen Kraft). The fllwing needs were identified: Educatin (awareness and specific KSA) f audilgists Educatin (awareness and specific KSA) f midwives Educatin (awareness and specific KSA) f childbirth educatins (prenatal class instructrs) Educatin f bstetricians Hearing Wrkgrup Meeting 12-10-07 Page 6 f 8
Educatin f hspital persnnel screeners and the individuals wh prvide the infrmatin t the families Mechanism t facilitate screening fr infants brn at hme. There are billing and liability issues fr hspitals when screenings are dne fr infants wh are nt inpatients. One ptin is t establish apprved sites fr screening. Funding is nt adequate t supprt fllw up with all families whse infant failed the hspital screening. Strategies fr increasing awareness include: Placards n buses Psters in Physicians ffices and anywhere pregnant wmen cngregate TV public awareness annuncements Stickers fr babies bassinets that say I had my hearing tested tday Wrkgrup Pririties 1. Assure the Infant & Tddler Cnnectin lcal systems Central Pints f Entry prvide apprpriate infrmatin t families whse children are deaf r hard f hearing are referred t early interventin (what training is needed) 2. Prvide infrmatin t lcal systems peridically t remind them that all children are eligible. Mnitr thrugh discussins at reginal meetings and thrugh the VEHDI Fllw Up Crdinatr s cmmunicatins with families. State EI cnference 3. Increase capacity f the Infant & Tddler Cnnectin f Virginia system t prvide effective, apprpriate supprts and services fr children wh are deaf and hard f hearing and their families regardless f the families cmmunicatin chices r where the families live. Prvide infrmatin abut expectatins/standards Prvide resurces abut hearing lss and interventin. Prvide infrmatin abut resurces fr cntinued educatin and training Develp a framewrk r guide t assist prviders in determining their training needs and develping persnal plans fr increasing their knwledge. Use JCIH guide as framewrk fr self-assessment and where t find the help 4. Play advisry rle fr the GBYS 5. Cntinue t advcate fr and educate peple abut the Hearing Aid Lan Bank 2008 Infant & Tddler Cnnectin f Virginia Annual Cnference Melinda, Sarah and Ellen will submit a prpsal t present a sessin (pssible 2) at the Infant & Tddler Cnnectin f Virginia Annual Cnference April 30/May1, 2008. The sessin may include infrmatin abut the new JCIH recmmendatins and discussin abut mechanisms t wrk tgether acrss the state t increase knwledge and skills including develpment f a system fr mentring. Sandra and Dana will take respnsibility fr a display table at the cnference t include in big letters the statement abut eligibility fr early interventin. The display will include infrmatin abut GBYS, the Hearing Aid Lan Bank, Virginia Netwrk f Cnsultants, and the Resurces available thrugh VDDHH (including having ne f the bins with all f the resurces available fr peple t see). Sandra and Dana will slicit vlunteers (knwledgeable abut the infrmatin at the table) t help man the table. Hearing Wrkgrup Meeting 12-10-07 Page 7 f 8
Training Opprtunities/Annuncements Making myself Heard January 5 Register by Dec. 20, 2007. This training is fr cnsumers, students, and ther interested peple. It is prvided by a parent wh is a lawyer and wh has a daughter wh is deaf. Next Meeting: February 12, 2008 frm 10:00 AM 2:30 PM Henric Mental Health - West Agenda fr Next Meeting: Intr new prgram manager Pririties and Gals Reprt frm Advisry Cmmittee Update frm GBYS Funding updates Varius cnferences pprtunities t present inf Update n plans fr EI cnference Update n regulatins Guide fr prviders self assessment and training Assignments: Pst Fact Sheet n TTAC Online (Ann) Send name, dates, lcatin and cntact persn fr cnferences (where grup members culd present r have display table) t Beth Everyne Cmmunicate with Phyllis Mndak abut specifics fr HALB funding Sandra (Debbie t assist) Cmmunicate with Phyllis Mndak t clarify amunt f funding and time frame fr GBYS (Dana) Ask Bill Tinsley t review ptential grant pprtunities and make recmmendatins (Dana) Cmpare 2007 JCIH and ASHA dcument t the 2000 ASHA/JCIH dcuments t see if there are changes t the list f cmpetencies fr prfessinals wrking with infants and tddlers wh are deaf r hard f hearing and their families. Begin develping a framewrk f resurces/references/infrmatin surces linked t the cmpetencies (Beth, Ann, Debbie) Talk t Barry Strasnick abut pssible supprt frm Senatr Blevins fr a bill fr funding fr HALB (Debbie) Talk t VP fr Legislative Affairs (SHAV) t see if the pssibility f SHAV supprt can be addressed at the spring SHAV meeting (Sarah) Submit prpsal fr presentatin at the EI cnference (Sarah, Melinda, Ellen) Submit request fr display table (when inf abut hw t d this is disseminated t the field) Sandra and Dana Participate in telecnference abut review/revisin f regulatins (Sarah, Ruth) Fllw up regarding JCIH s furth early interventin recmmendatin (Beth) Hearing Wrkgrup Meeting 12-10-07 Page 8 f 8