PAGE 1 NOVEMBER 2013- NEW JERSEY ABLE NEWSPAPER
VOLUME 8 NUMBER 11 NOVEMBER 2013
AWARD-WINNING
New Jersey THE NEWSPAPER POSITIVELY FOR, BY & ABOUT THE DISABLED PROUD IN N.J. IN THIS ISSUE Parents Lose Suit Hundreds Joined in Disability Parade Appeal Court Rules City Not Liable PAGE 2
ANCOR Declaration Focuses on Obstacles To Health Care for IDD PAGE 2
ADAPTers Arrested Government’s Broken Promises Upset Advocates PAGE 3
Max Gold Grounded Smithsonian Refuses To Reasonably Accommodate PAGE 4
Clearinghouse Mandate Web Has Repository of Info On Products and Services PAGE 5
Clinical Trial Approved FDA Says Stem Cell Therapy OK for MS PAGE 9
Sports The third annual New Jer- celebration on East Lafayette N.J. Division on Disability Ser- Swimming, Goalball sey Disability Pride Parade St. vices and the N.J. Council on & Powerlifting and Celebration was held Oct. In honor of National Disabil- Developmental Disabilities PAGE 12 4 in Trenton. ity Employment Awareness spoke. Hundreds of people and Month, the Commissioner of “The Disability Pride Parade many organizations represent- the N.J. Department of Human is an opportunity for people VISIT ing a wide variety of disabili- Services, Jennifer Velez, Esq. with disabilities to show that ties marched from the New as well as representatives from having a disability is a part of ABLE'S Jersey State House on West N.J. Department of Vocational human diversity,” said Velez. WEBSITE State St. to the disability pride Rehabilitation Services, the Continued on page 11 WWW. ABLENEWS.COM NEW JERSEY ABLE NEWSPAPER-NOVEMBER 2013 PAGE 2 ticular foodwasnotindicated that day,althoughpar- teacher broughtintoclasson tion toblueberriesthatthe their sonhadanallergicreac- phylactic shockatschool. two weeksaftergoingintoana- substances andfoods.Hedied and allergictoalargenumberof protecting hissafety.” Jonathan’s medicalneedsand responsibly inprovidingfor ably relyonthatschooltoact (DOE) “wasentitledtoreason- Department ofEducation York dents withdisabilities, cializes intheeducationofstu- his community.Theschoolspe- could notbemetatschoolsin cational andmedicalneeds it wasdeterminedthathisedu- School ofWaldwick,N.J.,after Island, attendedTheForum sey. his privateschoolinNewJer- who wentintotoxicshockat 9-year-old boywithdisabilities liable forthe2004deathofa A vice providers,healthcareprovid- with IDDandthestepsthatser- obstacles tohealthcareforpeople (IDD). and/or developmentaldisabilities care forpeoplewithintellectual seeks toremovebarriershealth people withdisabilitieswhich a declarationonhealthparityfor sources (ANCOR)recentlyissued Community OptionsandRe- Declaration Equality OutlinesMeanstoHealthCare To signupgotoourwebsitewww.ablenews.com Just email [email protected] and we’llsignyouup! Just [email protected] His parentsbelievethat Begley wasautistic,asthmatic In Jonathan Begley,ofStaten The declarationoutlinesthe The AmericanNetworkof Convert yourpaper subscription 6 MonthsofAbleOnline!!! 9 9 , thecourtruledthat Begley v.CityofNew City ofNewYorkisnot mously ruledthatthe n appealscourtunani- GIVE IT GIVE A TRY A to online! Or Parents LoseAppeal FREE ceive routinescreeningssuchas health care,arelesslikelytore- rience delaysingainingaccessto abilities aremorelikelytoexpe- vention thatshowpeoplewithdis- ters forDiseaseControlandPre- disabilities. medical needsaspeoplewithout ing, preventivecareandother have thesameaccesstoscreen- aid, musttaketoensurethey ers andfunders,suchasMedic- not havetheabilitytoexercise school inanotherstateanddid in thecustodyofaprivate sponsible forachildwhowas and itsDOEcannotbeheldre- classroom whennecessary. was permittedtoenterthe side atalltimes,althoughshe requiring anursetobebyhis specific requirementintheIEP court heldthattherewasno just outsidetheclassroom.The tioning hisnurseinthehall Education plan(IEP)bysta- violated theirson’sIndividual claimed thattheschoolhad their son’sdeath.Theyalso nurse couldhaveprevented school staffandtheirson’s who soonthereaftercalled911. nurse wascalledtothescene, was unsuccessful.Theschool’s distress, butthetreatment nephrine whenhewentinto ministered threedosesofepi- school andtoallhisclassesad- hired toaccompanytheboy into contactwiththefruit. the boydidinfacteatorcome more, itwasneverproventhat when hewasenrolled.Further- parents providedtotheschool on theallergylistthatBegley’s It alsocitesdatafromtheCen- The courtfoundthatthecity His parentsbelievethat The privatenursethecity which ledtotheappeal. dants appealedthatdecision, damages toproceed.Thedefen- their claimforcompensatory and thenurse,butallowed damages againsttheschool Begleys’ claimforpunitive previously rejectedthe signs ofrespiratorydistress.” Jonathan firstbegantoexhibit tance ...withinminutesafter called foremergencyassis- School personnelappropriately panel. “Inaddition,TheForum home,” declaredthefour-judge that whichcamefromhis not begivenanyfoodexcept gies andinstructingthathe teachers andstafftohisaller- protect Jonathanbyalerting that ittookreasonablestepsto The ForumSchool...showed gic reaction. ries triggeredJonathan’saller- plaintiffs toprovethatblueber- no evidencewassubmittedby also feltboundtothefactthat save theboy’slife.Thecourt taken theappropriatestepsto ruling thatthedefendantshad school andtheirson’snurse, parent’s lawsuitagainstthe court alsodismissedthe control overthatschool.The alarming trend.” commitment tochangingthis ties. pared topeoplewithoutdisabili- lives disproportionatelycom- minishing thequalityoftheir health careisshorteninganddi- Renee Pietrangelo,ANCORCEO. gage intheircommunities,”said where toliveandworken- dently andmakechoicesabout with IDD,astheyliveindepen- thing theycantosupportpeople prevention. disabilities throughresearchand of intellectualanddevelopmental for thereductioninincidence (AAIDD) andtheArcthatcalled and DevelopmentalDisabilities can AssociationonIntellectual position statementbytheAmeri- voted unanimouslytoendorsea the ANCORboardofdirectors overweight andotherdisparities. mammograms, aremoreoften The statesupremecourthad “The evidencesubmittedby Today we’reannouncingour “The lackofequitableaccessto “Our membersaredoingevery- Additionally, earlierthisyear, ert Court,Bethpage,N.Y. 11714. is publishedmonthlybyMelmontPrinting,6Rob- office. ©1994 office. odicals are beingpaidforatBethpage,N.Y. post at P.O. Box395,OldBethpage,N.Y. 11804.Peri- lisher of not necessarilyreflect theviewofeditor/pub- without furtherapproval. Editorialmaterialdoes of othersandthatthematerialmaybepublished that thematerialisnotaninfringementofrights scripts orart.Submissionsare theauthor’swarranty No responsibility isassured forunsolicitedmanu- panied byaself-addressed stampedenvelope. manuscriptsmustbeaccom- to assure safereturn, manuscripts andsuggestionsforarticles.However, space occupiedbytheerror. errors inadvertisementsbeyondthepriceof mission ofthepublisher. this publicationmaybereprinted withouttheper- sible forthecontentofadvertisements.Nopart Editorial and Advertising Postmaster: Sendaddress changesto N.J.NEWSPAPER ABLE P.O. B December Issueof Furnished UponRequest Furnished Offices fortheDisabled Offices The Deadlinefor Susan Romeo(emerita) Beth Guarino(emerita) Angela MieleMelledy Able Newspaper Able Technical Assistance Able OX www.ablenews.com Production Director County Comments FAX 516939-0540 Advertising Rates Margaret Wenzel 395,O Joseph Amoroso Melmont Printing Art &Production Marilyn Wheeler Office Manager Office EDITORIAL STAFF Jennifer Becker Directors ofthe Acting Director Director’s Desk ABLE NEWSPAPER. ABLE Ann Imbrogno Norman Smith Norman Debbie Simko 516 939-2253 Louis Melledy Fannie Miele Allison Howe Published By Accounting Kevin Limiti Columnists Staff Writer Staff for the Publisher Assistant isNov. 15 LD STAFF B Able . Advertisersare respon- ETHPAGE isnotresponsiblefor
Able Newspape Able Able , NY 11804 welcomes Able News r PAGE 3 NOVEMBER 2013- NEW JERSEY ABLE NEWSPAPER ADAPTers Arrested Over Broken Promises ixty ADAPT protestors where recently arrested at the White House dur- Sing a week-long visit to Washing- ton, D.C., meant to celebrate ADAPT 30 year anniversary of fighting for the rights of people with disabilities. “We are here because the Obama Administration and Vice President Joe Biden have pledged to work with people with disabili- ties on the Americans with Dis- abilities Act (ADA), Olmstead and the Affordable Care Act (ACA),” said Tom Earl of Philadelphia ADAPT. “They have promised ADAPT to move away from an institutional bias, but they have broken that promise. Even worse, they have begun a pattern of ignoring the disabil- ity community. The Department of Labor did not include the dis- ability community in promulgat- ing rules covering a companion exemption to the wage and over- time regulations.” The activists worked their way through gaps in the barricades at the entrance road to the White House. When they would not head police warnings, dozens of them ADAPT Protesters at White House were placed under arrest, many in wheelchairs. House, ADAPT stormed the of activists from across the coun- said Nancy Salandra of Philadel- “I’m getting arrested because I Longworth House Office Build- try about the lack of affordable, phia ADAPT. “Adequate housing can. I am thinking of the people ing on Capitol Hill, where accessible housing. Another issue is critical to exercising our civil that went before me to fight for my House Speaker John Boehner raised by ADAPT included a right of living in the community. rights – the right to go to school, (R) has a public office. ADAPT policy to define people in nursing We look forward to following up ride the bus and other civil told Boehner not to threaten homes as being homeless. Jones with Mr. Jones for action on the rights,”said Matt Clark of Phila- the programs that enable stated that he was in agreement issues we raised.” delphia ADAPT. “I believe I should people to live in the community with most points raised by “Despite our many accom- pay it forward and fight for the rather than nursing facilities ADAPT, and he promised to in- plishments, we still face tre- rights of people who cannot be here and institutions. vestigate a number of individual mendous barriers, before the now, the next generation.” Part of their visit to the nation’s problems. right of everyone to live in the “I’d rather go to jail than capital included a meeting with “We appreciate Mr. Jones com- community is a reality,” said to die in a nursing home,” Deputy Secretary of the Housing ing out to meet with us to hear Bruce Darling of New York said Jonathan Dollhopf of and Urban Development (HUD) firsthand the dire housing situa- state ADAPT. “If it takes an- Binghamton, N.Y. Maurice Jones. tions facing people with disabili- other 30 years of fighting, we Prior to visiting the White Jones answered the questions ties from around the country,” will still be here.” Final Rule to Black Lung Benefits Act Published The U.S. Department of The first amendment man- The re-instated amend- plies to miners’ and their survi- Labor’s Office of Workers’ Com- dates a presumption of total dis- ments are 30 United States vors’ claims. In addition, the pensation Programs (OWCP) re- ability or death caused by pneu- Code 921(c)(4) and 30 U.S.C. rule eliminates several unneces- cently announced the final rule moconiosis for coal miners who 932(l); and they are contained sary or obsolete provisions in implementing amendments to worked for at least 15 years in in Section 1556 of the Patient accordance with Executive Or- the Black Lung Benefits Act underground (or comparable sur- Protection and Affordable Care der 13563. passed by Congress in 2010. Com- face) mining and who suffer or Act and apply to claims filed The final rule was published monly called the Byrd Amend- suffered from a totally disabling after Jan. 1, 2005, that are in the Federal Register, and it ments after their sponsor, the late respiratory impairment. The sec- pending on or after March 23, can be viewed at www.federal Sen. Robert Byrd, the amend- ond amendment provides auto- 2010. register.gov/articles/2013/09/25/ ments re-instate two provisions matic entitlement for eligible sur- The final rule addresses the 2013-22874/regulations-imple- regarding coal miners’ and survi- vivors of miners who were them- automatic entitlement of certain menting-the-byrd-amendments- vors’ entitlement to benefits that selves entitled to receive benefits survivors and the 15-year en- to-the-black-lung-benefits-act- had been eliminated in 1981. as a result of a lifetime claim. titlement presumption as it ap- determining-coal-miners. NEW JERSEY ABLE NEWSPAPER-NOVEMBER 2013 PAGE 4 Museum inWashingtonD.C. summer attheAirandSpace cess toaflightsimulatorlast Institution fordenyingMaxac- M Coverage nationwide. more than900Championsfor Sebelius recentlyrecognized (HHS) SecretaryKathleen Max GoldRefused Accommodation at Smithsonian Health andHumanServices 900 Championsfor Coverage Marketplace HelpInsurance Jake andMaxGold ax Goldandhis ing theSmithsonian brother Jakearesu in certainsituations. Gold oftenactsashiscaregiver him tobewheelchairuser.Jake amputated asachildcausing sulted inhavinghisrightleg anomaly birthdefectwhichre- Merrick, N.Y.hasavascular provising forthatobstacle.” we’ve alwaysdone.Wewereim- were doingsomethingthat said Gold.“MybrotherandI of stairs. wheel chairandwalkupaflight ing thatMaxgetoutofhis simulator, atonepointsuggest- rated “bytheoperatorsof siblings were“insultedandbe- tice LawCollective,theGold because ofhisdisability. get coveragethroughthe able insurancelearnmoreand help Americanswithoutafford- businesses havevolunteeredto Shawn Heller,oneofthelaw- Max Gold,anativeof “It wasalittleconfusing,” According totheSocialJus- These organizationsand Continued onpage 8 begin onJan.1,2014.” those whoenrollbyDec.15will Tavenner said,“Coveragefor website. posting informationontheir hosting educationeventsor about thelawintheiroffice, cluding providinginformation organizations arehelping,in- There aremanywaysthese through theMarketplace. derstand theirnewoptions bers oftheircommunitiesun- Services (CMS)tohelpmem- ters forMedicare&Medicaid able materialsfromtheCen- zations. ties offaithandcivicorgani- centers, hospitals,communi- bloggers, communityhealth nesses andorganizations– clude nationalandlocalbusi- enrolled,” saidSebelius. courage theirneighborstoget help spreadthewordanden- and localelectedofficials–can community groups,advocates business leaders,faith cluding healthcareproviders, the groundineverystatein- quality healthcoverage. and purchaseaffordable,high ers awholenewwaytoshop place, whichwillgiveconsum- Health InsuranceMarket- The growinglistoforgani- CMS AdministratorMarilyn They willusepubliclyavail- ChampionsforCoveragein- “A networkofvolunteers on Jan. 1,2014. coverage beginningasearly until theendofMarchwith can applyandchooseaplan ues forsixmonths.Consumers surance Marketplacecontin- service representative. chat withatrainedcustomer more orparticipateinalive CuidadodeSalud.gov tolearn languages. tion servicesavailablein150 855-889-4325), withtransla- ers usingTTY/TDDcandial1- 2596, (hearingimpairedcall- a weekbycalling800-318- is open24hoursaday,7days ketplace consumercallcenter centers andlibraries.TheMar- help atlocalcommunityhealth they arelocated. provides theserviceandwhere ent names,dependingonwho roll inaplan. health coverageoptionsanden- help peopleunderstandtheir people trainedandcertifiedto and ThriftyWhitePharmacy. Lutheran ServicesinAmerica tional Women’sLawCenter; Men’s HealthNetwork;Na- Bon SecoursHealthSystem; American NursesAssociation; Academy ofFamilyPhysicians; zations includesAmerican Enrollment intheHealthIn- Visit HealthCare.govor Consumerscanalsofind They willbeknownbydiffer- In allstates,therewillbe PAGE 5 NOVEMBER 2013- NEW JERSEY ABLE NEWSPAPER Fourth Grader Wins High-Tech Braille Device cutting-edge educational tool. learn Braille together and The contest involved giving work together more easily. It six families the opportunity to resembles a small typewriter try out the device for two with a Braille keyboard, out- weeks and then blog about put screen, memory storage, their experiences. Duffy re- file-sharing capabilities and ceived 13,000 online votes data-processing functions. from friends, family and the Although Duffy was thrilled general public throughout the to win, it was a bittersweet vic- country who followed the com- tory, because she felt bad for the petition. five other children who were not Duffy began losing her vi- so lucky. sion at age 6, due to an optic The six families joined forces disease which is very rare in and created fundraising pages females, especially those her so the five other families could age. She began to learn Braille attempt to purchase the device. and use various devices that Perkins Products started helped her read and write. each family off with a $500 do- Contest winner Abby Duffy, left, with her brother Sam and mother But the SMART Brailler is nation and within a couple Penny. a state-of-the-art device which days, three of the families bby Duffy, a fourth won a Perkins SMART Brailler provides audio and visual feed- reached their goal. grader from New in a contest designed to provide back with hard-copy output so The other two families are A Hampshire, recently a child who is blind with a free that people who are blind can on their way. Clearinghouse is Repository of Communications Info The Federal Communications Equipment Distribution Pro- ticular constituencies or devices. kit-accessibility-clearinghouse; Commission’s (FCC) Accessibil- gram (NDBEDP). Related links are the Acces- Source code of the Clearing- ity Clearinghouse is a Congres- To enable more flexible and sibility Clearinghouse, www.fcc. house SDK, www.git hub.com/ sionally-mandated web reposi- targeted use of Clearinghouse gov/accessibilitycleari nghouse; FCC/clearing houseSDK; Demo tory of information about acces- information, the FCC has re- blog post on the Clearinghouse of the Clearinghouse SDK, sible communications products leased a software development SDK, www.fcc.gov/blog/fcc-re- www.youtube .com/watch?v=_ and services. kit (SDK) that makes custom leases-software-development- Pk0igOFmqY. It is mandated by the 21st programming of inquiries to the Century Communications and database relatively easy with a Video Accessibility Act of 2010 free, popular language called (CVAA), which also requires the Python. Python-based apps can FCC to promote this resource to query the Clearinghouse based the public. The Accessibility on an application programming Clearinghouse includes informa- interface. tion on accessibility features of Clearinghouse information mobile phones; accessibility con- may be selectively filtered and tacts at telecommunications and combined with data from other advanced communications ser- sources as mashups. Views of vices companies; free assistive information may be created that Toll Free Information Line: 1-888-285-3036 apps for various computing plat- differ from the presentation on forms; and organizations imple- the Clearinghouse website, menting the National Deaf-Blind thereby tailoring value for par- DiscoverAbility NJ is a project of the NJ Department of Human Services/Division of Disability Services. THE DISABILITY RIGHTS MOVEMENT We are supporting the employment of individuals From Charity to Confrontation with disabilities in NJ by creating stronger DORIS ZAMES FLEISCHER AND FRIEDA ZAMES connections to employers, supporting professional The Struggle for disability rights in the U.S. development opportunities for human services staff and conducting outreach and education activities Doris Zames Fleischer has been a member of the with consumers and businesses. This project is Humanities and Social Sciences Dept. at New Jersey funded by the Center for Medicaid and Medicare, Institute of Technology since 1988. Frieda Zames, Comprehensive Employment Services Grant. Associate Professor of Mathematics Emeritus at New Jersey Institute of Technology, was a disability rights activist for more than 25 years. $24.95 Submit Orders To: Temple Universary Press 1601 N. Broad Street, USB 305, Philadelphia, PA 19122 Call us toll-free 1-800-447-1656 or fax us at 215-204-1128 Visit our web site at www.temple.edu/tempress NEW JERSEY ABLE NEWSPAPER-NOVEMBER 2013 PAGE 6 internet internet Live call in (213) Live callin(213) Facebook- %XTENSIVE MOBILITY PRODUCT LINES s .EW WHEELCHAIR VEHICLES s 0R On ManhattanNeighborhoodNetwork we canbeseenonthe Watch usontelevision, bycheckingourwebsite Email ONE OFOURPRIMARY GOALSIS TO ENABLEPEOPLE Verizon FIOSChannel35 TO CONTROL THEIR OWNLIVESBY GETTING THE INNERSIGHT meansFREEDOM Advocates fortheDisabled www.mnn.org - vÊ9ÕÊ >Ê Ài>ÊÌ]Ê7iÊ >ÊiÌÊ9ÕÊ/ iÀi Call [email protected] www.blogtalkradio.com/innersightinfo www.facebook.com/#!Frank.Perino.INNERSIGHT So, wherearewe So, GOVERNMENT’S MONEYSENT TO US MNN broadcaststo Twitter -https://twitter.com/innersightinfo V 7 nightsaweek 9p.m.to10eastern
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