TheAdvocate

The Newsletter of

740 S. Chester Road, Swarthmore, PA 19081STATE BUDGET IN CRISISThe Arc's Advocacy Services in JeopardyAperfect storm of state revenueshortages and paralyzed politicalprocesses has played havoc with thestate budget for 2009-2010. As thisnewsletter goes to print in mid-August,the Governor and state legislatorsremain deadlocked on competingspending priorities for the coming impact of the stalemate, and of thelikely budget, is that fewer children andadults with developmental disabilities,and their families, will be able to obtainthe services they most states, Pennsylvaniahas no allowance for extending theprovisions of a current budget if a newbudget is not approved by July governor's proposal to temporarilyincrease the state income tax in orderto compensate for lower state revenuesduring the economic recession hasbeen blocked by the state Senate. Thelikely consequence is that the provi-sions of Senate Bill 850, which hasbeen passed as a temporary measure,will prevail, severely cutting services tochildren with special needs and adultswith intellectual and developmental dis-abilities, including adults with ics of the cuts will not be fullyknown until a final budget is funding to support advocacy servic-es in Delaware County will likely becut, jeopardizing The Arc's advocacyservices for children and adults andtheir ’s Inside . . .Advocacy . . . . . . . . . . . . .2 - 3Resources . . . . . . . . . . . .4 - 5Community . . . . . . . . . . .6 - 7Membership Meeting . . . . . .8Governmental & CommunityAffairs . . . . . . . . . . . .10 - 11Right to Education . . . . . . . .11Newsletter on the WebDiane Perry and her son David greet Congressman Joe Sestak at a resourcefair at Interboro High Arc's newsletter is now available onour website, us know if you would prefer to readit online, by sending us an email at*************************.1

Advocacy Moving Forward:

Transition Conference for Youth

in Southeastern Pennsylvania

SAVE THE DATE!

Workshops for SiblingsOffered at ElwynElwyn has announced a series of workshops created forsiblings of children with special needs. Sibshopsoffersbrothers and sisters the opportunity to meet and talk withothers who know what it is like to have a sibling with adevelopmental disability. Sibshopsinclude a lively mixtureof games, discussion, and guest speakers for siblingsages 8 through 12.

Sibshopsare scheduled for 1-4 pm on Saturdays onOctober 17th, November 21st, January 9th, February 20th,March 13th, April 17th, May 15th & June 12th. All work-shops will be held in room 317 of the AdministrationBuilding on Elwyn's Media campus. A$10 registration feeper child includes the cost of all activities and snacks. Toregister or for more information, please call Mary Delanyor Barbara Haas-Givler at Elwyn at (610) ay, November 7, 2009

to

Registration/Breakfast

Holiday Inn

432 Pennsylvania Avenue

Fort Washington, PA 19034

Conference will include:

Breakfast Buffet and Lunch

Plenary Session

Choice of 3 Interactive Workshops

Meet and Greet Reception

FREE conference for youth and young adults with disabilities,

including Social Security Beneficiaries, on the tools for successful

transition to employment or college. We encourage family

members, educators, employers, and others to attend as well.

Resources and experts will explain what may happen to your

benefits and how to take the next steps toward your future.

Details and registration information will follow. Sponsored by the Disability Rights

Network of Pennsylvania (DRN), Protection and Advocacy for Beneficiaries of

Social Security (PABSS). For more information, contact DRN at

*******************,1-800-692-7443(voice),or1-877-375-7139(TTY).Introducing a new way

for parents of children

and youth with special

health care needs to:Dear Parent or Caregiver,The Pennsylvania Medical Home

Initiative (PA MHI) has launched a

website for parents and caregivers of

children and youth with special health

care needs.

"Medical Home" describes an

approach to health care that

emphasizes the partnership between

health care practitioners and families.

By working as a team, medical

practices and families can provide

care for Children and Youth with

Special Health Care Needs (CYSHCN)

that is accessible, continuous,

comprehensive, family-centered,

coordinated, compassionate, and

culturally effective.

LearnShareConnectSupportMembers of this virtual community

will be able to:•Start a discussion•Ask a question•Give an answer•Share tips, tricks, and shortcuts•Offer support to others•Write a blog•Create a group for parents with

similar interests or situations•Meet new people•Reconnect with people you already

know•Create a virtual meeting spot for

your local community group•Invite your friendsAll of this is easy and free!This is your invitation to join usat the new place for parents of go to click on the

“Parents”button!On October 1, 2008, please visit us at

join the conversation!2

AdvocacySPOTLIGHTONSTAFFErica M. Bagwelljoined the staff

as the Administrative Assistant for

The Arc. Erica answers the phone,directing calls and providing informa-tion and referral information. Ericaalso provides clerical support to

The Arc staff and the IndependentMonitoring for Quality (IM4Q) will graduate in October '09

from the CHI Institute in the MedicalAssisting with Phlebotomy has a six-year-old son. Prior tocoming to the Arc, Erica worked as

an Administrative Customer ServiceRepresentative at The Loews Hotel

of Philadelphia.

Erica joins Kathleen Perry (AdultAdvocate), Kathy Zepka (ChildAdvocate), Jim Hutchinson (IM4QCoordinator), Cathy Escher (FiscalDirector) and Douglas Trout (Execu-tive Director) as members of the staffat The CRECEIVESPDDCOBSGRANTFROMThe Arc of Delaware County wasawarded a grass-roots advocacy grantfrom the Pennsylvania DevelopmentalDisabilities Council (PDDC) for $10,000to raise the awareness of employersof the value and benefits of employingPDDCcontinued on page 7KEEPINGUPWITHCHANGESINSERVICESAs an advocacy organization, The Arc is aware of the increasing complexity andrate of change in the community-based service system for adults with we share information about several new options for supports in thecommunity, we want to remind you how important it is to talk to your SupportsCoordinator about how to access needed services. Your Supports Coordinatorcan help you get the information you need to determine what type of services

will best meet your needs or the needs of your family member. Be an informedconsumer: call your Supports Coordinator and ask for what you Becomes State-and embraced by people in Delawarewide Provider of ISOCounty who need residential supportServicesservices. For more information onLifeSharing, please call your SupportsThe New Year brought a change

Coordinator at the Delaware Countyin how Independent Support ServicesOffice of Mental Retardation(ISO) are provided in Pennsylvania.(610.713.2400) or call The Arc ofAcumen, a company out of Mesa,

Delaware County at a, is the new, single provider ofISO services and has been workingwith families to transfer their servicesAgency with Choicefrom prior providers to the new state-Option Now Available inwide provider system. DelawareCounty's Supports CoordinationDelaware CountyProgram (OMR) reminds users of ISOThe Arc of Chester County is nowservices to keep lines of communica-providing a program in Delawaretion open with your supports coordina-County for those who want to selecttor. They can help, but only if you lettheir own staff while receiving assis-them know what is going on. For moretance from a service provider. Theinformation about ISO services contactAgency with Choice program pro-your supports coordinator, or to contactvides such "back office" services asAcumencall toll-free 866-717-6251 orpayroll, tax and workers' compensation**********************************.for staff that are selected and super-vised by the person receiving servicesand/or their representatives. TheIFEAgency with Choiceprogram allowsOption for Living in theLSHARING:

A Residentialyou to:Community•Choose and control the servicesyou receiveLifeSharingis a special type of•Directly recruit or select yourservice that allows a person whopersonal support service workersneeds residential supports to live with•Determine how and when servicesa family or single person and sharewill be providedlife's experiences with them. The "con-•Receive assistance and training

sumer" of this unique service may beon an as-needed basis from Thesomeone who's own family caregiversArc of Chester County to manageare no longer able to provide care

your own service workersat home, or someone who has beenliving in a group home and desiresIf you have questions or are interestedanother type of residential exploring this new option further,please call Kari Burdeau, Agency

The Delaware County Office ofwith Choice program director, at

Mental Retardation hopes that610-696-8090 ext. 241 or email her atLifeSharingwill be widely available*******************************.3

ResourcesBrain Fitness and Assistive Technology for Olderand Disabled Adults to Maintain a CompetitiveEdge in the Workforce and in their Daily LivesAn assistive technology device can be as simple as a magnifying glassogy devices in the form of correctiveglasses to increase visual acuity andclarity. Some of us receive our phonecalls through a wireless device directlyattached to our ear. This frees ourhands to do other things like drive acar. Using a cane or a walker can bringa sense of stability and increase mobili-ty in an individual who has experienceda loss of balance or muscle miraculous devices, from

the most simple to the more complex,enhance our lives and make it possiblefor us to complete tasks and interactwith others in ways that would beimpossible without them. In a sense,they extend who we are. They give usthe potential to be more productive

and live in an age where there aremany computer-generated devices andsoftware programs which can be usefulteaching tools to increase learningfunctions, such as problem-solvingskills or reaction speed. There aremany companies, including the big soft-ware developers, that include featureswhich make the product more useful

for individuals with specific oft incorporates a speech-to-text function in which the text on thescreen can be highlighted and read bya computer-generated biggest problem is that compa-nies developing products designed toassist individuals with disabilities can'tkeep up with the constant changes inthe ways new computers work. Mostcomputer-based assistive productswork along with an existing means that in order to operateeffectively, the assistive product has towork with the computer that you own,which may be several years old orbrand Lois S. Levine-Elman, CERTIFIEDSCHOOLPSYCHOLOGISTHow many of us have reached for amagnifying glass to read the small printon a medicine bottle? In today's world,we are already using assistive technol-February is Go Direct/Direct ExpressMonth, and The Arc of the United Statesis partnering with the U.S. Department ofthe Treasury's campaign to encouragethose who receive federal benefit checksto sign up for electronic ns of senior citizens, people withdisabilities and veterans depend on get-ting their federal benefit checks eachmonth. Yet too many are still receivingtheir Social Security and other paymentsby paper checks, including members ofour ing to electronic payments is

a better way to receive your onic payments eliminate the risk ofstolen checks and help protect againstidentity theft. Plus, electronic paymentsgive you immediate access to yourmoney from virtually everywhere, sothere's no need to wait for the mail todeposit or cash a check. Two optionsrecommended by the U.S. Department

of the Treasury are now available:•Direct deposit – Go Direct®gives peo-ple with checking or savings accounts

a fast, free way to sign up for directdeposit. To sign up, call the toll-freehelpline at (800) 333-1795, go online

to , or visit your localbank or credit union.•The Direct Express®card – Aprepaiddebit card giving people without bankaccounts a safe, easy alternative topaper checks. There are no sign-upfees, monthly fees or overdraft charges,and the card can be used to makepurchases, get cash and pay bills. Tosign up, call toll-free (877) 212-9991,

go online to ,

or visit your local Social Security office.4

ResourcesMusicWorks Delivers Music Therapyto Special PeopleMusicWorks is a music therapyservice that has operated in DelawareCounty since 2002. MusicWorksprovides music therapy services torestore, improve and maintain thequality of life of all individuals through-out the Delaware Valley who are chal-lenged by autism, Down syndrome,special needs, mental retardation,developmental challenges, illness

and aging.

MusicWorks works with children,young adults and seniors through indi-vidual and small group music therapysessions. In the spring of 2008, Music-Works became a 501(c)(3) goal is to raise grant funds, corpo-rate gifts and individual donations toassist children and young adults whoqualify financially and cannot affordmusic therapy sessions. Music therapyis not covered by most traditionalinsurance company orks uses a small groupmusic therapy session model (limitedto 6 clients per session). The primarygoals of music therapy are to promotesocial interaction, language, communi-cation and learning skills, behavioralinterventions, focus and attentionenhancement and enrichment of devel-opmental abilities for all clients in a safe,interactive environment. MusicWorkstailors its music therapy programs toaddress the specific needs of eachindividual and small group.

Atypical small group music therapysession runs thirty minutes. The ses-sion would include an opening song,

a percussion activity, a movement ordance-type task, supervised improvis-ing on the guitar and/or the SuzukiQChord synthesizer, Djembe drum-ming improvisation, keeping the beatto live or pre-recorded music withBoom Whacker percussion tubes orpercussion eggs, maracas, marchingsticks, tambourines, guiros cowbells,claves or other types of percussioninstruments and a closing the summer of 2008, MusicWorksfacilitated music therapy services totwo large groups of teenagers (over 35participants) who were challenged byDown syndrome at the Camp Pals pro-gram run by the Julian Krinsky Campsat Cabrini College. The supportiveresponse of the participants and chap-erons was overwhelming. This pastChristmas, MusicWorks providedmusic intervention to a DELARC bowl-ing team at the Knights of ColumbusHall in Springfield during their holidayparty. Again, teenagers, young adultsand parents fully participated andenjoyed a very unique music orks offers small groupmusic therapy sessions on Mondayafternoons and evenings in sessions will begin in Swarthmoreon Thursday afternoons and eveningsstarting in February 2009. Athird loca-tion is planned to open on the MainLine in spring 2009. MusicWorks isdedicated to bringing music therapysessions into local neighborhoods forthe convenience of its consumers andtheir families.

If you are interested in participatingin a small group music therapy sessionat any location, please call MusicWorksat 610-449-9669. If you know someonewho may benefit from music therapy,please tell them about more information, please goto the MusicWorks website .5

CommunityMembers of

The Arc'sDaytrippersClub enjoy

a Riversharksballgame atCampbell Field.A first photo ofthe First FridayFriends group,a new socialgroup foradults who liveat home anddesire anotheroption forsocialization.6

CommunityThe Arts for Advocacy fundraiser was apartnership between The Arc and the ntinued from page 3Our first Arts & Advocacy fundraiser wasvery well attended by Arc members and you are a business owner or amember of a business association

in Delaware County, please contactDoug Trout at The Arc for informationabout how you can participation in

this project. You can reach Doug at************************or by callingthe office at (610) s with developmental t EmployABILITYis a jointeffort by The Arc and the DelawareCounty Everyday Lives AdvisoryCommittee, and will also engageCeisler Jubilirer,a media and issuesadvocacy firm with offices in Philadel-phia and Harrisburg, in the design andimplementation of a public awarenesscampaign targeting employers inDelaware County. The project will alsohost an "Employment Summit" for indi-viduals with developmental disabilitiesand representatives of local businessesand business associations in a collabo-rative process of enhancing theprospects for an opportunity! The Independent Monitoring for Quality (IM4Q) project is recruiting Arcmembers to interview adults with disabilities about the quality of their lives. Teams of two

use a survey form to gather information about the quality of supports and services from theperspective of the person with a disability and their family. Each member of the team receivesa $30 stipend for each survey completed. Training and support are provided by The Arc, andfamily members who are conducting the interviews tell us that they find the experience veryrewarding and you are interested in learning more about the IM4Q project, please talk to Jim Hutchinson at610.544.6600 or jhutchinson@ the IM4Q Project!7

MembershipFALLMEMBERSHIPSMEETINGSETFOREPTEMBER26THFocus on Special Education, Funding Update

The Arc of Delaware County is hosting a fall membership meetingon Saturday, September 26, 2009 from 12:30 - 2:30 pm at The Arcoffices in Swarthmore. The focus of the meeting will be sharing thenewest information on special education and Individualized EducationalPlans. Special presenter will be Heidi Konkler-Goldsmith, theSupervising Partner for Special Education at McAndrews Law . Konkler-Goldsmith will also present on functional behavioralassessments and discipline. With a new school year just begun, andchanges this year to special education regulations in PA, the presenta-tion is timely for all parents of children with special needs. The public

is invited. For more information, please call The Arc or email us at************************.The fall membership meeting will also provide an opportunity toshare updates on the impact of the state budget on The Arc andservicesto childrenand adults with developmental disabilities.8Support The ArcMany Ways toAs The Arc faces the challenge ofcompensating for elimination of statefunding for advocacy services, weappeal to our membership and friendsto find a way to support The of the ways include:UNITEDWAY:You can direct yourcontribution at work by designatingThe Arc as the recipient of your United Way of Southeastern PA,our designation number is #00348; forUnited Way of Southeast DELCO, ournumber is #APPEAL:The Arc solicitscontributions from its membership

and friends once a year, through theCampaign for Advocacy in the fall orthe Annual Giving Campaign in thespring. Let us know if you prefer oneor the other by sending us an email at*************************.BEQUESTS:Invest in The Arc's futurethrough a planned bequest, with theadvantage of the estate tax deductionfor charitable bequests. For moreinformation on bequests or other formsof planned giving, call us or email arequest at*************************.FUNDRAISINGEVENTS:Participate in themany fundraising opportunities duringthe year, from Boscov's FriendsHelping Friends to our annual FunDNight in February. Watch for informa-tion on our Campaign for AdvocacyKick-off Event in October/November!VOLUNTEERING:The Arc has manyopportunities for meaningful volunteeractivities that stretch our capacity toprovide services. Call us today oremail us at************************.BequestThe Arc acknowledges with gratitude abequest from the Barbara Griffith BorzellTrust, in memory of Stephen Griffith and"for all the wonderful work" of The Arc.

MembershipArc Membership Grows Throughout YearMr. & Mrs. Ed AbramsDavid AlexanderStephen AllmanBernadette ArmstrongPaul BachynskyBrian BanksDebbie Barksdale-AdamsEric BenningsMargaret BlairSteven BoltonMaureen BonnellShirley BrauermanAndrew BreenJoseph BristowJulia BrooksRobert BurnsElizabeth CammorataPatricia CampigliaKenneth CarrollBernadette CartyAnthony CasertaJohn CernigliaAnthony Joseph ChandlerMaureen CharamellaStephen CobournLouis ColagrecoSandra Connelly DeYennoMichelle CrainMichael CrawfordDavid CreechRalph CrowtherWilliam CutilliAlberta DavidsonRobert DavisJoey DearingWilliam DillJoan DonnellMr. & Mrs. William DowdThomas FaixAnthony FalconeDenise FayShirley FidelbusShirley FlintJoseph FloodMalia FluellenDaryl FoxworthPhillip FryBrian GallagherJoan GallagherJoseph GlassEdward GodseyRobert GoodleySteve GottoBrandon GrahamGeraldine GrayDonald GreenMr. & Mrs. Joe GrynRay HaddonMark HallJoseph HamiltonLester HarperFrank HawkinsAnn HayesP. Daniel HealeyRaymond HeilJanice HendersonAmeer HenryNora HoganMichael HollandGrace HousemanPriscilla HudsonLynn HueyWilliam HurtStephen ImbrigliaAzizi ImmanuelEugene JohnsonScott JohnsonMarilyn JonesJibi Jose KandammalilBritta KarlsonMary Ann KellyCharles KernsJoan KindtNana KoppKevin KozlowskiThomas KrumboldtRosemarie LaMannaJanine LatellaRandi LaVoeJackie LightChristopher LucasAudra SowdenMr. & Mrs. Steve LutherCraig SpeareBrian LysterMr. & Mrs. Michael StrolliRobert LytleKaseem TaylorMr. & Mrs. Dennis MacedoIris ThomasEugene MaderCharisse ThompsonMagness FamilyMichelle ThompsonValerie MahgoulJulia TilghmanRobert ManleyMarlyce TillatsonKathleen McAnallyBarbara TomlinsonJames McKennaAndrew TroianiChristopher MillerLydia VascoGeorge MillerCarol Von BergenRichard MorsellRegina WalshClarence MyersRobert WernerWilliam NealyDeneen WhittonEnrique NegronMike WisneskiElvei NewbernBennitt WoodDiane NiccoloChristopher WoodingEugene NovalskiJim WursterJames O'KeefeBenjamin OrtizWalter OsborneMarla PappasCrystal PayneChris PetersInWilliam PetrelliLinda PriceMemory

LovingMichele RestaDavid RitcheySandy BellAbigail RiveraNitza RiveraBarbara Griffith BorzellMichael RodgersLydia RuizMargaret FrattarolaShannon RussoMyrl SchaefferGreg HarlenMaddi ScreemWilliam SeheinJoseph LaSalaHarriet ShireyRichard SilvestriJoseph LentzKelly SlaganElizabeth SmithNicholas TascioneMr. & Mrs. Guy SmithChad SolomanCatherine YingerMichael Soscia9

Governmental & Community AffairsDental Care for PeopleWith Disabilities aLegislative IssueAccording to a report to Pennsylva-nia's legislators, people with disabilitiesare at a greater risk for health issuesrelated to the lack of dental care. Thereis a growing body of evidence whichlinks poor oral health with increasedrisks for systemic conditions such asheart disease, diabetes and aspirationassociated with COPD. The report alsopointed out that, in Pennsylvania, 75%of dentists do not accept Medicaid,leaving an average of 1 dentist per1,000 patients with Medicaid practices that provide IV seda-tion and other specialized care areeven more difficult to report to Pennsylvania's legis-lators, submitted by Achieva andsupported by a grant from the PADevelopmental Disabilities Council,

can be reviewed and printed in full

from the website a,info/lity years and make over 15million requests for medical the NHIN, Social Security'ssystem will automatically send an elec-tronic message to a hospital that pro-vided services to the applicant. Withinminutes the medical evidence is avail-able for evaluation. This will make thedisability determination process moreefficient for those who depend on you need to apply for disabilitybenefits through Social Security, youcan apply online at /disability. You don't have to com-plete the application all in one sitting;you can take a break and log back

on to complete it later without startingover. Also, you're able to check thestatus of your pending applicationonline after you've submitted Technologies atSocial Security ImproveDisability ClaimsSocial Security has become the firstgovernment agency to use the Nation-wide Health Information Network (NHIN),which will cut the time it takes to getmedical records for people who applyfor disability benefits. This year, SocialSecurity will handle almost three millionDelaware County Council presents a Proclamation for Developmental Disabilities Awareness Monthto Dorothy Klein, Human Services Director; Mara Nunez, Co-chair of the Everyday Lives AdvisoryCommittee; and Douglas Trout, Executive Director of The Arc of Delaware County. Council membersinclude (Lto R) Council Vice-Chairman Jack Whelan, Councilman Tom McGarrigle, CouncilmanChristine Fizzano Cannon, Council Chairman Linda Cartisano, and Councilman Andy Lewis.10

Governmental & Community AffairsRight

to

Education Task Force

Invites

Parents to WorkshopsThe Delaware County Right to Education Task Force is a group of parents, professionals, and commu-nity members working together to insure the integrity and delivery of Special Education services toeligible students within the county. This group will work to monitor the Special Education servicesprovided and to insure that interested parties are made aware of the rights of eligible students as setforth by state and federal Delaware County Task Force meetings are held at the Delaware County Intermediate Unit locatedat 200 Yale Avenue, Morton, PA. The local Task Force meetings begin at 6:00 PM with a light dinnerbeing served at 5:30 PM and the meetings ended by 8:00 public is invited and encouraged to attend all workshops, which are free of charge. For further infor-mation,pleasecall610-938-9000,**************************************************************.Meeting/Workshop/Presentation Schedule 2009-10Meeting Date09/15/0910/06/0911/10/0912/01/0902/02/1003/02/1004/13/10TopicTop 10 Things to Know About an IEPThe History of the Right to Ed Task ForceThe Law & Your Child with Special NeedsExtended School YearPost Secondary Employment & EducationCutting Through the Red TapeUnder ArrestMeeting TypeWorkshop/DiscussionGeneral Meeting/PresentationGeneral Meeting/WorkshopWorkshopWorkshopGeneral Meeting & WorkshopWorkshopRoom #0-328-2556Thanks to

King's Automotive

for their sponsorship

of The Arc11

DateSeptember 9thSeptember 26thOctober 2ndOctober 11thOctober 14thOctober 24thNovember 6thNovember 11thDecember 4thDecember 5thDecember 20thEventBoard MeetingMembership MeetingFirst Friday FriendsFALLFESTIVALBoard MeetingShowboatat

MEDIATHEATREFirst Friday FriendsBoard MeetingFirst Friday FriendsWizard of Oz at

MEDIATHEATREANNUALHOLIDAYBANQUETTime7 pm12:30 - 2:30 pm6 - 8 pm12:30 - 3:30 pm7 pm2 pm6 - 8 pm7 pm6 - 8 pm2 pm11:30 am - 3:30 pmLocationThe ArcThe ArcDCIUDrexelbrookThe ArcMedia TheatreDCIUThe ArcDCIUMedia TheatreDrexelbrookThe Arc of Delaware County

740 S. Chester Road, Suite GSwarthmore, PA19081610-544-6600 -mail**********************Non-profit OrganizationNon-profit OrganizationU.S. PostagePAIDNewtown Square, PA19073

Permit No. 53Board of DirectorsDonna Wetherill, President

Fred HaffelfingerKathy KoehlerSandra LatellaMarv MortonCarlton PeikertDiane PerryRobert Prince

Michael V. Puppio, JDMarian RothsteinColleen ShepherdRobert TurnerRobin WrightExecutive DirectorDouglas R. Trout, Ed.M.