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DOWNSYNDROMEPLANNINGGRANTTHEARCOFNEWMEXICO
Funded by The Arc of the United States through the Isabel Gonzales Trust Fund
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Greetings!
In2011,TheArcofNewMexicoreceivedagrantfromTheArcoftheUnitedStatesinWashington,D.C.to:1)conductanationalsearchforbestpracticesinthecare,educationandsupportofindividualswithDownsyndrome,2)conductaneedsassessmentforindividualswithDownsyndromelivinginNewMexicotoidentifyexistingservicesandprogramsandgapsinservicesandprograms,and3)developoneormoreprojectproposalsthatprovideforthecare,education,andsupportofresidentsofNewMexicowithDownsyndromebasedupontheinformationgatheredfromthenationalresearchandstatewideneedsassessment.
LaterinJuly,afterreceivingandreviewingnumerousresumes,TheArccontractedwithAnnBadwayandShannonEnright‐Smithtoadministertheplanninggrant.InAugustbothattendedthe39thAnnualNationalDownsyndromeCongressConventioninSanAntoniowheretheyhadtheopportunitytoattendnumeroussessions,interactwithfamilymembersandnetworkwithexpertsandleadersinthefield.
Inthefollowingmonths,AnnandShannonmetwithandinterviewedfamilymembers,disabilityserviceproviders,advocates,andhealthcareprofessionals.Theyalsohadtelephoneconversationswithexpertsfromaroundthecountryandcontinuedtoresearchnationalbestpracticesontheinternet.OneofthebiggestchallengestheyfacedwaslocatingindividualswithDownsyndromeandtheirfamiliesaroundthestate.TheycontactedseveralDownsyndromechaptersandalsoreceivedinformationandsupportfromRandyMascorella,ExecutiveDirectorofNewMexicoSpecialOlympics.
Astheinterviewscontinued,effortswerestartedtodevelopfocusgroupquestionsandtoidentifycontactsinvariouscommunities.Inaddition,workwasstartedtodevelopon‐linesurveyswithassistancefromCameronCrandall,M.D.andLisaBroidy,Ph.D.bothfromtheUniversityofNewMexico.Twosurveyswerecreated,oneforcaregiversandoneforfamilymembers.
InDecember,MaryEllenGarciajoinedtheprojecttoprovideadministrativesupport.Severalfocusgroupswereheldbeforetheholidays.InJanuary2012,numerousfocusgroupswereconductedinAlbuquerqueandinothercommunitiesaroundthestateandthesurveyswereavailableonlineviaSurveyMonkey.
Thisreportcontainstheresultsoftheinterviews,focusgroups,surveysandhighlightsnationalissuesandtrends.Keyrecommendationsinclude:
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1) Develop a centralized clearinghouse of information regarding all aspects involved in the care, support and education of individuals with Down syndrome for families, caregivers and service providers
2) Establishment of a Down syndrome Clinic, attached to the University of New Mexico Hospital, Center for Development and Disability.
3) Training and education regarding all aspects involved in the care, support and education of individuals with Down syndrome for healthcare professionals, educators and service providers.
ThisisanexcitingopportunityforTheArcofNewMexicoandTheArcoftheUnitedStatestoworktogethertodevelopprogramsofnationalsignificancethatwillenhancethequalityoflifeforindividualswithDownsyndromeandtheirfamilies.
Thankyouforyourparticipationandassistance.
RandyCostales
ExecutiveDirector
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Introduction
In2011,TheArcofNewMexicoreceivedaplanninggranttoaddresstheneedsofindividualswithDownsyndromefromTheArcoftheUnitedStatestoidentifythebestpracticesinthecare,educationandsupportofindividualswithDownsyndrome,conductaneedsassessmentforindividualswithDownsyndromeinNewMexicoanddeveloprecommendationsresultingfromthesefindings.Asaresult,TheArcofNewMexicoputtogetheraPlanningGrantTeamtoassesstheneedsofindividualswithDownsyndromeinNewMexicoandputforthrecommendations.
ThisreportaimstosummarizetheneedsandservicegapsforindividualswithDownsyndromethroughoutNewMexico.Thisreportisintendedtoprovidegeneralinformationaboutthemethodologyfortheresearchconducted,resultsoftheweb‐basedsurveysandfocusgroupinterviews,recommendationsandinformationregardingnationalresearchandbestpractices.
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Acknowledgements
OnbehalfofTheArcofNewMexico,wewouldliketoformallyacknowledgethededicatedprofessionalswhohavelenttheirinvaluableexpertisetothePlanningGrantforIndividualswithDownsyndromeinNewMexico.TheIsabelGonzalesFundofTheArcoftheUnitedStatesfundedthisproject.
The Arc of New Mexico Staff
RandyCostales,ExecutiveDirectorCarmenGarcia,CentralNewMexicoAdvocateSteveScarton,Self‐AdvocacyCoordinator
The Arc of the United States
ToniaFerguson,GrantManagerNicoleGoble,ProgramAssociate
Project Consultants
AnnBadway,JD.LisaM.Broidy,PhD,AssociateProfessor,DepartmentofSociologyandDirector,InstituteforSocialResearch,UniversityofNewMexicoCameronS.Crandall,MD,AssociateProfessorandViceChairforResearch,DepartmentofEmergencyMedicine,UniversityofNewMexicoShannonEnright‐Smith,LISWMaryEllenGarcia,B.A.MaryQuitzau,MBA,PMP
Community Partners & Collaborators
TheArcofSanJuanCountyCenterforDevelopmentandDisability,UNMHealthSciencesCenterSchoolofMedicineDownsyndromeFoundationofSoutheasternNewMexicodownsyndrome.com(permissiontousephotos)EPICS(EducationforParentsofIndianChildrenwithSpecialNeeds)LaVidaFelicicdadParentsReachingOutRioGrandeDownsyndromeNetworkSpecialOlympicsofNewMexico
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RandyMoscarella,ExecutiveDirectoroftheSpecialOlympicsofNewMexico,providedinvaluableassistanceandsupportforthePlanningGrant,facilitatingtheidentificationofindividualswithDownsyndromeinourstate,aswellascommunitymembersandprofessionalsinvolvedinthecare,educationandsupportofthesecitizens.
Dr. Broidy and Dr. Crandall generously donated their time and expertise throughout the Planning Grant, offering guidance, assisting in the creation of the online survey, and performing the data analysis.
If we have inadvertently left anyone off this list, please accept our sincerest apology.
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Methodology
ThisreportaimstoprovideanassessmentoftheneedsandservicegapsforindividualswithDownsyndromethroughoutNewMexico.Tothisend,weconductedweb‐basedsurveysandfocusgroupinterviewswithasampleoffamilies/caregiversofindividualswithDownsyndromewholiveorprovideservicesinNewMexico.Inaddition,weconductedweb‐basedsurveyswithhealthcareandsocialserviceproviderswhoworkwithindividualswithDownsyndrome.
BecausethereisnoregistryofDownsyndromeindividualsinNewMexico,werequestedandobtainedcontactinformationforindividualswithDownsyndromefromSpecialOlympicsofNewMexico(SONM).SONMprovidedmembershipcontactinformation(names,phonenumbersandaddresses)for276individualswithDownsyndromeandtheircaregiversresidingin21outof33countiesinNewMexico.Ofthe276individualsidentifiedbySONM,117or42%,resideinBernalilloCounty(allbutoneoftheselivesintheAlbuquerquemetropolitanarea).
Ratherthancontactalloftheseindividuals,particularlysinceAlbuquerquewouldbeoverrepresented,weinitiallyselected45caregiversforinitialtelephonecontact;20fromthegroupinBernalilloCountyandtheremaining25fromaroundthestate.Duringtelephonecontact,weexplainedthegrantpurposealongwithoptionalwaystoparticipate:focusgroup,onlinesurvey,orindividualinterview.Weaskedinterestedcaregiverstochooseonemethodofparticipation.
BecausethelistprovidedbySONMmaynothaveincludedallindividualswithDownsyndrome,wealsoprovidedgrantprojectinformationtoorganizedparentsupportgroups,andadvocacyandprovideragenciesandrequestedthatanyoneinterestedinparticipatingintheresearchcontactusdirectly.ThoughwereachedouttofamiliesandotherswhocareforindividualswithDownsyndromethroughSONMandothersupportandadvocacygroups,intheend,mostofourparticipantvolunteerswererecruiteddirectly,throughinformalcontactwithprojectstaff.StaffspenttimetravelingaroundthestatetalkingtothoseintheDownsyndromecommunityabouttheprojectandmostofthosewhotooktheonlinesurveyandparticipatedinfocusgroupsareindividualswhostaffmetthroughtheseoutreachefforts.Intheend,26caregiversfromNewMexicorespondedtotheweb‐basedsurveyand91participatedinfocusgroups.
Thoughthisisclearlynotarandomsample,asdemographicinformationindicates,therespondentscomefromcommunitiesacrossNewMexicoandcareforindividualsrangingfromchildhoodthroughadulthood.Assuch,theyareausefulgroupofkeyinformantsfromwhichtolearnpertinentinformationabouttheservicegapsthatindividualswithDownsyndromeandtheirfamilies/caregiversfaceinNewMexico.
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Toidentifypotentialproviderswhocouldcompletetheweb‐basedsurvey,SONMprovidedcontactinformation(includingemailaddresses)forthirteenhealthcareprovidersparticipatingintheSONM“HealthyAthleteProgram.”Detailsofthegrantprojectandaweb‐linktotheweb‐basedsurveyweresentviaemailto,serviceprovidersandpublicschoolprograms(e.g.,transition,therapeuticrecreation,specialeducation,therapy).
Wedevelopedaweb‐basedsurveytoidentifythekeyneedsandservicegapsforindividualswithDownsyndromeinNewMexico.Wecreatedaseparatesurveyforfamilies/caregiversandforproviders,withbothrelyingonclosed‐endedLikertscalequestionsandopen‐endedresponsequestionstocapturekeyinformation.Familyandcaregiversurveyquestionsmeasuredtheirattitudesandperceptionsabouttheneed,availabilityandsufficiencyofservicesintheircommunityincluding:healthcare,education,socialactivities,andsourcesofinformationandsupport.Serviceprovidersurveyquestionsmeasuredattitudesandperceptionsabouttheirsourcesofinformationandsupport,theirlevelofknowledge,educationandtrainingregardingDownsyndrome,andtheneedandavailabilityoflocalservices.Bothsurveysalsoincludedanoptionalsectionwhererespondentscouldprovidedemographicinformation.Caregiver/familyrespondentswereaskedabouttheirowndemographicbackgrounds(gender,incomerange,andeducationlevel)aswellasthedemographicsoftheindividualwithDownsyndrome(age,genderandrace).Providerswereaskedtoreporttheirgender,highestlevelofeducation,andlengthoftimeasaprovider.Thesurveyswerekeptpurposelyshorttoencouragecompletion.
Inadditiontotheweb‐basedsurvey,weconductedthirteenfocusgroupsandonetelephonicinterviewwithcaregiversofindividualswithDownsyndrome.FocusgroupsmetinAlbuquerque(N=6),Farmington(1),Gallup(1),RioRancho(2),Roswell(1),LasCruces(1),andShiprock(1)with91participantsintotal.Onaverage,focusgroupshadsevencaregiverparticipants.Mostfocusgroupsmetonce,forabouttwohours.TwooftheAlbuquerquefocusgroupselectedtoreturnforanadditional90minutemeetingamonthlatertostreamlinetheirconcernsandrecommendations.
Wedigitallyrecordedallfocusgroupsandonememberoftheresearchteamalsotookwrittennotesateachmeeting.Asoptionalmeasures,weaskedparticipantcaregiverstoprovidetheirsocio‐demographicinformation,includingethnicity,educationallevel,householdincome,outsideemployment,insuredstatusandwhethertheindividualwithDownsyndromeresidedwiththeparticipant.Tomaintainrespondentconfidentiality,weseparatedthesheetwithcontactinformationfromthedocumentcontainingbackgroundordemographicinformation.Additionally,wecollectednonamesoraddressesthatwouldlinkresponsestoindividualparticipants.
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WeusedaseriesofbroadquestionstoframefocusgroupdiscussionsandindividualinterviewsandgainknowledgeabouttheneedsofindividualswithDownsyndrome:
Whatisyourprimaryroleinthecare,educationandsupportofindividualswithDownsyndrome?
WhatarethekeythingsthatmakeitdifficulttoprovidecareeducationandsupportforindividualswithDownsyndrome?
WhatarethekeythingsthatmakeiteasierforcaregiverstoprovidecareeducationandsupportforindividualswithDownsyndrome?
Whatlocalagencies/peopledoyouworkwiththathelpineffortstoprovidecare/support?
Whatdoyoudotokeepinformedofexistingornewservices? Whataretheservicesthatareneededbutnotavailableinthelocalcommunity? Whataresomebarrierstothoseservicesbeingprovided? Whatagegroupistherethegreatestneedforservices? Whatagegroupistherethebestrangeofservicesavailable?
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ProviderWeb‐BasedSurveyResults
Provider Respondent characteristics
Forty‐fiveprovidersfromavarietyofcommunitiesthroughoutNewMexicorespondedtotheweb‐basedsurvey.EverycountyinNewMexicohadatleasttwoproviderswhoofferservicestothatcounty.ThemajorityofrespondentsprovideservicesinBernalilloCounty(56%)followedbyTaosandLeaCounties(16%each),EddyandValenciaCounties(13%each),SandovalCounty(11%).Theremainingcountiesareeachservedbylessthantenpercentofrespondents.Thelargestgroupofrespondentsidentifythemselvesaseducators(47%)followedbyhealthcareproviders(24%)andsocialserviceproviders(18%).Abouthalf(52%)ofrespondentsreportworkingdirectlywithindividualswithDownsyndromeforovertenyears.Thoughnotallrespondentsofferservicestothefullrangeofagegroups,togethertheprovidersrepresentagroupthatservesthefullrangeofagegroupsfrombirththroughlateadulthood(seeTable1).Ofthosewhoprovidedtheirgender(N=32),72%arefemale.Mostproviderrespondents(61%)haveanadvanceddegree.
Table1. Agegroupsservedbyrespondingproviders.
Need and availability of services
Overhalfoftheproviderswhorespondedtothesurvey(60%)agreethat“IndividualswithDownsyndromearedifferentenoughfromindividualswithotherkindsofdevelopmentaldisabilitiesthatthereshouldbeservicesdesignedtospecificallyaddresstheirneeds,”while(24%)disagreewiththisstatement.Mostrespondents(67%)reportbeingwellinformedoftheneedsofindividualswithDownsyndromeinthecommunity(ies)wheretheyprovideservices.Overhalf(53%)alsoreportbeingwellinformedoftheservicesavailabletomeetthoseneeds.
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Howeveronly14%ofprovidersagreethattheservicesavailableinthecommunity(ies)theyservearesufficienttomeettheneedsofindividualswithDownsyndrome.Atthesametime,55%disagreeand31%areunsurewhethertheircommunitiesoffersufficientservices.Oftheavailableservices,providershighlightearlyinterventionandschoolbasedprograms.Whenaskedaboutnon‐healthcareserviceneeds,providerrespondentsdetailedcaregiverservicesandtransitiontoadulthoodtrainingasnotablylacking.
Figure1showsrespondents’senseoftheagerangeswiththebestandthemostlimitedrangeofservicesavailabletoindividualswithDownsyndromeinthecommunity(ies)theyserve.Ingeneral,providersrepliedthatyoungeragegroupshaveabetterrangeofservicesavailable,particularlyupthroughage17years.Respondentrepliesweremixedbecauseatthesametime,providersalsoreportedthattheagegroupwiththemostlimitedrangeofservicesis4to12years.Theyalsoreportalimitedrangeofservicesforadults23yearsandolder.Itisalsonotablethatoverone‐thirdofprovidersreportednotknowingwhichagerangeshavethebestormostlimitedrangeofservicesavailable.
Figure1. AgerangeswiththemostlimitedandbestrangeofservicesavailableforDownsyndromeasreportedbyproviders.
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ThemajorityofproviderrespondentsreportmoderatetohighneedforarangeofmedicalservicesspecifictoindividualswithDownsyndrome(seeTable2).Respondentsalsoreportlimitedavailabilityacrossthesamerangeofservices.Thegapsinservice(calculatedbysubtractingtheavailabilityreportedfromtheneedreported)aregreatestforbehavioral(60%)andmentalhealth(58%).Althoughprovidersnotesignificantgapsinallareassurveyed.
Table2. Need,availabilityandgapsinhealthcareservicesforDownsyndrome.
Training and education about Down syndrome
Only16%ofproviderrespondentsreporthavingreceivedtrainingoreducationspecificallyonDownsyndromewithinthepastfiveyears,35%reportneverhavingreceivedsuchtraining,and47%reporthavingreceivedsuchtrainingoverfiveyearsago.Atthesametime,themajority(70%)agreesthattheformaltraining/educationthattheyhavereceivedhasbeenusefulandup‐to‐date.Amongthetypesoftrainingrespondentsreporthavingreceived,anumberreportedgraduateschooltraininginspecialeducation.Othertrainingsourcesincludecontinuingeducationcoursesandattendingprofessionalconferences.Providersalsonotetheneedformorecontinuingeducationcoursesandotherongoingtrainingopportunities.
ProvidersreportthattheyreceiveinformationaboutDownsyndromefromavarietyofsources.Most(60%)reportusinginternetwebsearches.Inaddition,27%havetakencontinuingeducationcoursestolearnmoreaboutDownsyndrome.Another24%reportgettinginformationfromnationalDownsyndromeorganizationsandthesamepercentagereportobtaininginformationfromprofessionalmedicalorganizations.Finally,9%seekinformationfromlocalsupportgroups.Respondentsalsostatedthattheyreceiveinformationfromfamilies
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andotherprofessionalswithwhomtheywork.Ingeneral,mostrespondents(67%)statethatthisinformationisusefulandup‐to‐date,while31%disagree.
CaregiverWeb‐BasedSurveyResults
Caregiver Respondent Characteristics
Twenty‐sixcaregiversfromvariouscommunitiesinNewMexicorespondedtotheweb‐basedsurvey.ParentsofindividualswithDownsyndromemakeupthemajority(81%)oftheserespondents.Theremainingrespondentsincludeonesister,twoguardiansandone“supportperson.”ThelargestgroupofrespondentsreportlivinginBernalilloCounty(33%).ElevenpercentofrespondentsreportlivinginEddyCountyandanotherelevenpercentinSandovalCounty.SevenpercentreportlivinginTaosCounty.Chaves,DonaAna,Grant,Lea,McKinley,Otero,SanJuan,SantaFeandValenciaCountieseachhasonerespondent(4%).Ofthosewhoreportdemographicinformation(n=20),85%arefemale.Themajorityofcaregiverrespondents(65%)reporthavingacollegedegreeoranadvanceddegree.Most(58%)workfull‐timeoutsidethehome,26%workpart‐timewhile16%donotworkoutsidethehome.Ofthe17respondentswhoreporttheirannualhouseholdincomerange,30%reportanannualincomeunder$40,000whiletheremainderissplitbetweenthosemakingbetween$40,000and$80,000(30%)andthosemakingabove$80,000(25%).
Characteristics of the Individuals with Down syndrome
Twentyrespondentsprovidedemographicinformationabouttheindividualforwhomtheyprovidecare.Ofthese,45%reportcaringforafemale.OnehalfoftheindividualswithDownsyndromeareAnglo/Caucasian,35%areHispanicand15%areAmericanIndian/AlaskaNative.Figure2showstheagerangeoftheindividualswithDownsyndrome.Halfoftherespondentsreportcaringforanadolescent(13‐17years)oryoungadult(18‐22years).Mostoftheserespondentsreporttheindividualforwhomtheyprovidecarehasatleastoneformofhealthcareinsurance,themostcommonbeingMedicaid(70%)orprivateinsurance(50%)(seeTable3).OnlyonerespondentstatesthattheindividualwithDownsyndromedoesnothaveinsurance.Fortypercentrelyonmorethanoneformofinsurance.
Themajorityofrespondents(84%)reportthattheindividualwithDownsyndromeforwhomtheyprovidecareliveswiththemfull‐time.Theremainderofrespondentsreportthattheindividualforwhomtheyprovidecareeitherliveswiththempart‐time,withanotherrelativeorinaresidentialhome.
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Figure2. AgegroupofindividualswithDownsyndromeforwhomrespondentprovidescare.
Table3.HealthinsurancetypeforindividualswithDownsyndrome.
Need and availability of services
Virtuallyallofcaregiverrespondents(92%)agreethat“IndividualswithDownsyndromearedifferentenoughfromindividualswithotherkindsofdevelopmentaldisabilitiesthatthereshouldbeservicesdesignedtospecificallyaddresstheirneeds,”whileonly8%disagreewiththisstatement.Mostcaregivers(92%)alsoreportbeingwellinformedoftheneedsofindividualswithDownsyndrome.Onehalf(50%)alsoreportbeingwellinformedoftheservicesavailabletomeetthoseneedsintheircommunity.However,only13%ofcaregiversagreethattheservicesavailableintheircommunityaresufficienttomeettheneedsofindividualswithDownsyndrome.Atthesametime,84%disagreeand4%areunsurewhethertheircommunitiesoffersufficientservices.
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Figure3showscaregiverrespondents’senseoftheagerangeswiththebestandthemostlimitedrangeofservicesavailabletoindividualswithDownsyndromeintheircommunity.Overwhelmingly,caregiverrespondentsindicatethatyoungeragegroupshaveabetterrangeofservicesavailable,particularlyupthroughage12years.Caregiverrespondentsalsoreportalimitedrangeofservicesforallagegroupsbeyondage3years.
Respondentsstatethatamongthebestservicesavailabletothemare1)earlyinterventionprogramsandservicesand2)SpecialOlympics.Respondentswerealsoaskedtoprovidedetailedinformationaboutserviceneedsintheircommunity.Serviceneedsfallintofourprimarycategories:1)education,2)transitiontoadulthood,3)healthand4)socializationexperiences.Withrespecttoeducationneeds,respondentsidentifyalackof:inclusionservices,specialeducationteachers,andcontinuingandhighereducationopportunitiesforindividualswithDownsyndrome.Duringthetransitionperiodfromadolescencetoadulthood,respondentsreportaneedfor:occupation/jobtraining,employmentopportunities,accesstohousing,interimservices/supportwhileawaitingaDDwaiver.Withrespecttohealthneeds,respondentsidentifyneedsfor:speech,behaviorandphysicaltherapyservicesaswellasproviderswhohaveexperiencetreatingolderindividualswithDownsyndrome.RespondentsalsonotealackofsocialactivitiesandoutletsforindividualswithDownsyndrome.Inaddition,morethanonerespondentnotestheneedforrespitecareservices.
RespondentswereaskedtodetailthespecificthingsthatmakeitdifficulttoaccessservicesforindividualswithDownsyndrome.Commonresponsesnotedistance,inadequateknowledgeofandlackofavailableofservices.Respondentssuggestthatservicesareusuallylocatedinurbanareasandfamilieswholiveoutsideofthoseareashavetotravelsignificantdistancestoaccesstheseservices.Thisisparticularlydifficultforcaregiverswhoworkfull‐time.Respondentsnotethatservicesarenotwelladvertisedandinformationaboutservicesishardtoaccess.Inaddition,manyprogramshavelongwaitinglistsandthebureaucracycanbedifficulttonavigate.
Tohelpcaregiversstayinformed,manyreportusingtheInternetincludingFacebook,email,Internetsearchenginesandspecificwebsites(e.g.,www.disablityscoop.com).Theyalsoreportsharinginformationwithoneanotherviasupportgroupsandinformalnetworks.
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Figure3. AgerangeswiththemostlimitedandbestrangeofservicesavailableforDownsyndromeasreportedbycaregivers.
Note:Throughoutthesectionsdetailingweb‐basedsurveyresults,percentagesmaysumtogreaterthan100%whenrespondentswereabletoselectmorethanoneresponse.Insomecases,percentagesmaybelessthan100%asaresultofmissingdataor“Don’tknow.”
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FocusGroupResults
WeconductedthirteenfocusgroupsandonetelephonicinterviewwithfamilymembersandcaregiversthroughoutthestateofNewMexico.WeheldfocusgroupmeetingsinAlbuquerque(6),Farmington(1),Gallup(1),RioRancho(2),Roswell(1),LasCruces(1),andShiprock(1)with91participants(seeTable4forasummaryofparticipantdemographics).Onaverage,eachfocusgroupmeetinghad7participants.Twomembersoftheprojectteamattendedeachfocusgroupmeeting.Oneleadthediscussionwhileanothertookdetailednotesaboutkeytopicsandissuesraisedbyparticipants.
Mostfocusgroupsmetoncefor2hours.However,twooftheAlbuquerquefocusgroupselectedtoreturnforanadditionalmeetingamonthlatertostreamlinetheirconcernsandrecommendations.
Open‐Ended Questions
WeelectedtoconductfocusgroupmeetingstosupplementsurveydatawithmorespecificandnuanceddetailsregardingtheneedsandservicegapsfacingindividualswithDownsyndromeandtheirfamilies/caregivers.Weusedthefollowingsetofquestionstoasetofquestionstoframefocusgroupdiscussionsaroundtheseissues:
Whatisyourprimaryroleinthecare,educationandsupportofindividualswithDownsyndrome?
WhatarethekeythingsthatmakeitdifficulttoprovidecareeducationandsupportforindividualswithDownsyndrome?
WhatarethekeythingsthatmakeiteasierforcaregiverstoprovidecareeducationandsupportforindividualswithDownsyndrome?
Whatlocalagencies/peopledoyouworkwiththathelpineffortstoprovidecare/support?
Whatdoyoudotokeepinformedofexistingornewservices? Whataretheservicesthatareneededbutnotavailableinthelocalcommunity? Whataresomebarrierstothoseservicesbeingprovided? Whatagegroupistherethegreatestneedforservices? Whatagegroupistherethebestrangeofservicesavailable?
Theseopen‐endedquestions,allowedforfacilitateddiscussiontoshareexperiencesandopinionsregardingthesetopics.Familieswereabletodiscusswhatservicestheyneed,whathasnotworkedandthebarrierstoprovidingthecare,educationandsupportofindividualswithDownsyndrome.Focusgroupdiscussionsallkeyedinonsimilarserviceandaccessbarriersandidentifiedasimilarrangeofprogrammingneeds.Moreover,thediscussionsechoedthefindingsfromthesurveywhileprovidingmoredetailregardingthespecificproblemsindividuals
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withDownsyndromeandtheirfamilies/caregiversfaceonadailybasis.Inthefollowingsections,wesummarizefocusgroupresponsestoeachofthesequestions,highlightingillustrativequotesthatexpressgroupsentiment.
Table4. CharacteristicsofthefamilyinformantsandtheindividualswithDownsyndromewhoparticipatedinthefocusgroups.
Description of Focus Group Themes
What is your primary role in the care, education and support of individuals with Down syndrome?
Participantsdescribedthemselvesasparents,teachers,advocates,caregivers,protectors,andfightersfortheirchildren.Participantsexpressedconcernsthatallparentsshare;howevertheseconcernsareintensifiedwiththeirfamilymemberwithDownsyndrome.
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Acommonthemewastheadditionaltimerequiredtoprovidethecare,educationandsupportforafamilymemberwithDownsyndrome.ParticipantsremarkedhowrewardingandchallengingitisbeingtheparentofachildwithaDownsyndrome.ParentsfeltthattheirchildwithDownsyndromeis“nodifferentthananyoftheotherskids,youworkwiththem,teachthem,playwiththem.Itjusttakeslongersincetheydevelopatadifferentrate.”Manyparentsstatedthattheyhavetotakeastrongadvocacypositionfortheneedsoftheirchildren“wearetheexperts;wearetheprofessionalsbecausetheyareourkids.”Amothercommented“Ihavetobeabearformychild.”
“Weliveintheboonies.I’vethusbecomemydaughter’s(whohasDown[s]yndrome)bestadvocate.IspendalotoftimeresearchingandreadingaboutDown[s]yndrome.”
“Asparentswefacemanyeverydaychallenges”
“Wehavetoalwaysadvocateforourchildren.”
What are the key things that make it difficult to provide care education and support for individuals with Down syndrome?
Participantsnotedhowgainingaccurateinformationandaccesstoservicesisdifficultandlimitstheirabilitytoprovidethebestcarefortheirfamilymember.Whendiscussingkeythingsthatmakeitdifficulttoprovidecare,educationandsupportfortheirfamilymemberwithDownsyndrome,participantsnotedproblemsinthreekeyareas:accesstoqualityhealthcare,accesstoeducationalservicesandaccesstogoodinformationaboutthevarioussupportservicesavailabletothem.
1) Access to quality healthcare
ParticipantslistedavarietyofproblemsnavigatingthehealthcaresystemandfindingphysicianswiththeexpertisetocareforDownsyndromepatients.Theseproblemsareclearlymagnifiedforthosefromruralareas.Notonlydotheruralcommunitieshavetroublewithgeneralpractitionersfortheentirecommunity,butfindingaproviderwiththeknowledgeandabilitytocarefortheirfamilymemberwithDownsyndromeisdifficult.Onefamilydescribeddifficultieswithanaudiologist.Thispractitionerwantedtofittheirsonwithhearingaidsbecausehecouldnotpasstheteststheaudiologistconducted.ThemotherhadtoeducatetheaudiologistaboutthedifferenceinearcanalsforindividualswithDownsyndrome.Herchilddidnotrequirehearingaids.Nearlyallparticipantsexpressedthedesirefor“healthcarewithDoctorsspecializingintheknowledgeofDownsyndromeandtheirpotentialstrengthsandpossiblehealthissues.”Familiesexpressedtheneedfor“pediatricianswithknowledge”to
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“medicalproviderswithknowledgeofolderindividualswithDownsyndrome.”
2) Access to education
Focusgroupparticipantsdiscussedarangeofproblemstheyencounterwhentoaccesstheschoolsystemandalsonotedthatproviderslackaccesstoeducationaswell.SchoolSystemFocusgroupparticipantsindicatedthatschoolsystemsvary,notonlybetweencitiesandcounties,butalsowithinthesameschoolsystem.Someparentsdescribedproactiveteacherswhoensuretheirchild’sneedsarebeingmet.Othersdidnothavethesameresponse.Someofthemajorissuesincluded:
IndividualEducationPlan(IEP)‐Parentswouldliketoknowtheirlegalrightsandtheirchild’slegalrights.Parentsdidnotknowiftheirchildreceivedtherightamountoftherapy,oriftheschoolwasbasingthetherapyontheirchild’sneedsasopposedtothebudget.Parentswantedtoknowiftheirchildqualifiesforaneducationalassistantortheprosandconsofinclusionversusnon‐inclusioninschool.
Parentsindicatedthatthetransitionsbetweenkindergarten,elementary,middleandhighschoolareverydifficult.Participantsfeltthattheyspentgreattimeandefforttonavigatethesystemjusttomovetoanotherschoolonceyouhavefigureditout.
Parentscommented,“Thereislittleinformationinthehighschools.“Thissentimentwasexpressedacrosstheboardfrompre‐schoolthroughhighschool.
Parentsalsoexpressedthelackofinformationaboutpost‐secondaryeducationfortheirchild,manydidnotknowoftheprograminRoswellatEasternNewMexicoUniversity.Parentswholearnedaboutthisthroughthefocusgroupsexpressedthe“lackofaccesstopostsecondaryeducation.”
Parentsexpressedthat“theschoolsareinneedofchangetosupportthesechildreninhelpingthemleadtoanindependentlife.”
EducationofServiceProvidersParticipantsdescribeddifficultieswithmedicalserviceprovidershavingtheknowledgeandinformationrequiredtoprovidecompetentcareforindividualswithDownsyndrome.Muchlikesurveyparticipants,focusgroupparticipantsalsoportrayedthegeneralfeelingthat“IndividualswithDownsyndromearedifferentenoughfromindividualswithotherkindsofdevelopmentaldisabilitiesthatthereshouldbeservicesdesignedtospecificallyaddresstheirneeds.”ThemajorityofparticipantsreportedahighneedforbetterrangeofservicesavailableforindividualswithDownsyndrome.Additionally,theyreportedthatthereislimitedavailability,particularlyintheruralregionsofthestate.
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Participantsidentifiedawiderangeofmedicalproviderswhoneedtraining,rangingfromnursestophysiciansanddentists,generaliststospecialists.Specificallyenumeratedmedicalspecialistsincludedobstetrician/gynecologistsandcardiologists.Alliedhealthproviders,includinggeneticistsandaudiologistswerealsomentioned.
3) Access to accurate information about services, including, the DD waiver, physical and occupational therapy, support services, socialization services.
Participantsdiscussedtheproblemthataccesstoaccurateinformationregardingallaspectsinthecare,educationandsupportofindividualswithDownsyndromeislimited.Parentsfromnumerousfocusgroupsstatedthatthereis“lackofinformation,”that“therearenoservicesgearedspecificallyforindividualswithDownsyndrome.”Oneofthemostcommonthemeswasthevaryinginformationthatisprovidedtofamilies.Oneparentnotedthat“informationnotprovided,IfoundoutaboutHypnotherapyfromanotherparentandmyEarlyInterventionServiceproviderdidnotmentionitatall.”ParentsnotedthattheylearnedabouttheDDwaiver,therapy,educationalrightsandvariousotherservicesthoughwordofmouthorby‘accident.’Participantsidentifiedthefollowingsystemsinwhichtheyhadreceivedinaccurateinformationornoinformationatall.
HealthCareInformation SocialServicesInformation SchoolSystemInformation PostSecondary/LifeSkillsInformation LegalInformationregardingtheirfamilymembersrightsandtheirrightsandresponsibilitiesascaregivers
DDWaiver SSI NeedsplanningforfinancialandlegalservicesindividualswithDownsyndrome
“TherearenoservicesgearedspecificallyforindividualswithDownsyndrome.
“ServicesavailableforindividualswithdisabilitiesareonlyaccessiblewiththeDDwaiver.”
What are the key things that make it easier for caregivers to provide care education and support for individuals with Down syndrome?
ParticipantsidentifiedSpecialOlympicsasoneofthekeyresourcesinthestate.ThisprogramallowsparentssocialinteractionwithotherfamilieswithindividualswithDownsyndromeand
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thesocializationthattheirfamilymemberneeds.Participantsattributethesuccessofthisprogramtothemission;itisallaboutthe“kids”theparticipants.SpecialOlympicsfocusesontheneedsofthosetheyserve.
ParticipantsidentifiedtheDDwaiverasaresourcethatmakesiteasierinthecare,educationandsupportofindividualswithDownsyndrome.ThosewhowereontheDDwaiverfeltthatwhatitprovidestheirfamilymemberisbetterthannothavingit.“WithouttheDDwavierIcannotgetmychildintoaprogram.”Thosewhowereonthewaitinglistexpressedthedesiretohavethis.Participantsfeltthataccesstotherapists,casemanagementprograms,andotherresourcessuchas“respitecareisnotaffordablewithoutthewaiver.”
What local agencies or individuals do you work with that helps in efforts to provide care and support?
Participantsineveryfocusgroupidentifiedonepersonintheircommunitythattheyoftengoto.ThisindividualwaseitherfromaserviceprovideroraparentofanindividualwithDownsyndrome.
ParticipantsidentifiedSpecialOlympicsastheagencythatprovidesthemthemostinformationandassistance.Throughtheathleticprogramsthattheyofferfamiliesareabletoconnectwithotherfamiliesandgainvaluableinformationfortheirfamilymember.Oftenthisistheonlyaccesstoresourcesandreferralsforfamilies.Otherservicesmentionedinclude:
ArcofSanJuanCounty NativeAmericanDisabilityLawCenter DDPCDevelopmentalDisabilitiesPlanningCouncil PROParentsReachingOut TheARCofNewMexico Theearlyinterventionprogramsintheircommunity,forexample,Roundtree,Tresco,LaVidaFelicidad,etc.
What do you do to keep informed of existing or new services?
Participantsdescribedthatthebestway,andoftenonlyway,theyareawareofexistingornewservicesintheircommunityisfromotherparents.Participantsdescribedthisas‘wordofmouth.’The‘wordofmouth’referralsandinformationisoftenprovidedintheSpecialOlympicssetting.Keycommentsfromparentsinclude:
“Formepersonally,IfindalotofinformationthroughFacebook.”
“Idon'thaveanyknowledgeofanyservices.”
“Ihaveafamilyfriendthatkeepsmeinformed.”
“Talkingtopeopleonmychild'sSpecialOlympicteam.”
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“TheArcandtheInternetDisabilityScoop“
“Throughmyworkwiththeschool.PanelsthatIamoninourcommunity.”
“WordofmouthfromotherDownsyndromefamilies.”
Are there services needed but not available in local community?
Participantsdescribedawiderangeofunmetneedsintheircommunities.Theseneedshadseveralcommonthemes.
Socialization
Participantsdiscussedtheneedforsocializationandactivitiesfortheirfamilymembers,otherthanSpecialOlympics.Whichwasoftendescribedastheonlyactivityorresourceforfamilies.IdeasincludingMerryMakers(adanceprogram),fitnessactivities,socialactivities.
Notification
ParticipantsdescribedvaryingstoriesregardinghowtheylearnedtheirchildhadDownsyndrome.Someparticipantswereawarepriortobirthviaprenatalscreeningandotherslearnedatbirth.Participantsdescribetheneedforamorethoughtfulprocessregardinghowparentsareinitiallyinformedabouttheirchild’sDownsyndrome.Participantsdescribedwantingawelcomebasket,numberofanotherfamilytospeakwithorsomeonetomeetthematthehospital.
OnemotherhadtoforcethedoctorstotestherchildandhadtofightfortheDownsyndromediagnoses.DoctorstoldherthatherchildwasfinebecauseherchildwasAsiantheydidbelieveher.
Onefamilysaidthat22yearsagowhentheybroughttheirchildhomefromthehospitaltheygotaknockonthefrontdooranditwasamotherandhertoddlerwithDownsyndrome.Theyhavebecomelifelongfriends.
OnemothersaidthedoctorsandnurseswerewhisperingaroundherdaughteraboutherhavingDownsyndromeandthatishowsheandherhusbandlearned.
OnemothersaidtheytoldherthatherchildhasDownsyndrome,gaveheraone‐sheetinformationsheetandsentherhome.Noonetoldheraboutthesmallnasalpassagesofherinfantandherchildalmostdiedbecauseshedidn’tknowwhattodo.
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Onemother,Spanishspeaking,saidthedoctorstoldherthattheycouldhelphergetridofherson.Havehimadopted.
Post‐Secondary Transition:
Participantsdescribedthetransitionbetweentheeducationalsystemandadulthoodlikefallingoffacliff.TheyidentifiedanacuteneedforbetterindependentlivingeducationandservicesforadultswithDownsyndrome.Parentsoftenexpressedaneedfor‘more’onceschoolingends.Commentswereextremelyinformativeandincluded:
“SocialgatheringsforindividualswithDown’ssyndromeandawarenessbroughttothe"normal"citizensofthecommunityaboutDown’ssyndrome.”
“Thereisinformationoutthereregardingearlyinterventionandschool,butwhathappensafterhighschool–transitionfromschooltoadultworld?Wewantourchildrentohaveagoodqualityoflifelikeeveryoneelseincludingfriends,jobsetc.”
“Independentlivingskillclassesonceanindividualreachesadulthood(schoolshouldbefocusingonacademicneedsfirstthenifappropriateaddresslivingskills),independenthousingwithoutDDwaiversupport,highereducationpossibilitiesandemploymentpossibilities.”
“Minimaltransitiontoadulthoodsupports/services.It'slikedroppingofftheedgeofthecliffonceschoolends.”
“Mychildhasacomplicatedcongenitalheartdefect,hadthreeheartsurgeries,andiscurrentlydoingwell.Shespent4monthsintheNICUwhenshewasborn,survivedMRSAat7weeks,hashypothyroid,needseyeglasses,hasenlargedtonsils,had5differentaudiologistsbuttodaycansafelyconfirmherhearing.Bottomline,Ihaveawonderfulpediatricianwhohashelpedmanagehercareandgivengreatadvice.Whilesherequiresmanycheckupsthroughouttheyear,canandhasbeenhospitalizedforrespiratoryviruses,Ifeeleducationafterhighschool,employmentopportunities,andcarewhen/ifsheisolderismostimportant.”
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Down syndrome Clinic
Participantsidentifiedaneedforamedicalfacilityinwhichtheycouldreceivespecializedcarefortheirfamilymember.Thisclinicwouldnotonlyprovidethisinformation,butalsoprovideresourcesandreferrals.Manyparticipatesexpressedtheneedforasocialworkerinthisfacilitywhocouldprovideaccurateinformation.Participantswantaccurateinformationaboutsocialprograms,medicalinformationandvariousotherreferrals.Parentscommentedonnumerousoccasionsthat‘aDownsyndromeclinicwouldbeagreatasset.’
What are some barriers to those services being provided?
DD Waiver
ParticipantsfrequentlynotedissuesregardingtheDDwaiver.Onefamilymemberdescribeditasthe“haveandhavenots.”Frequentlyparticipantsdescribedhowthey“stumbledon”totheDDwaiverandwerenevertoldaboutitthroughanyserviceproviderorthroughtheschools.Oftenfamiliesstumbleonthisverylateintheirchild’sschoolyearsandwiththe8to12yearwaitinglisttheyoftenhaveadultfamilymemberswithnoaccesstoservices.
InformationregardingtheDDwaiverandtheMiViaWaivervariedfromgrouptogroup,andwithineachgroup.Participantswouldlikeaccurateinformationabout:
Whatarethestepstosignup? Whenshouldyousignup? Whataretheeligibilityrequirements? Whatdoesthewaiverprovideformyfamilymember? WhataremyfamilymembersrightsundertheDDwaiver? WhatarethefederalandstatefinancialrestrictionsundertheDDwavierandotherassistanceprograms?
TheDDwavierandissuessurroundingtheDDwaiverwasaconstanttheme.Parentalcommentsincluded:
“ThewaitingtimetogetontheMedicaidDDWaiver.TheJacksonlawsuitinNewMexicohaseatenupmoneythatcouldhavegonetogetmorepeopleontheDDWaiver.”
“Theridiculouslylongwait(~16years)toreceiveaDDwaiverallocation.Ifafamilycan'tself‐payforservices,itisverydifficultforindividualstoparticipateinthecommunityaftertheyfinishschool.”
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“ManypeopledonotknowaboutavailableservicesincludingtheDDWaiver.”
“ThereislimitedtonoaccesstoservicesforindividualsontheDDwaiverwaitinglist.Theseservicesinclude;socializationwithothers,dayhab,respite,trainingforemployment.”
Distance and rural barriers
Manycommunitiesdescribedtheruralnatureofthestateabarriertoproperservicesfortheirfamilymembers.Communitieshavedifficultywithgettingandretainingprovidersforallservicesintheircommunity.
ThetimetotraveltoAlbuquerque,Lubbockoranotherurbansettingisoftentimeconsumingandexpensive.Itisatleast6hoursroundtripinadditiontothevisits.Thesetripsareoftenovernight.Parentsnotedthatthelackoflocalservicesandthegeographicalbarriersoftenmakesitdifficult.“ItakemydaughterforanymedicalneedstoAlbuquerque.Closerservicewouldbeveryhelpful.”
Access to therapy or services
Participantsidentifiedinabilitytoaccesstherapistsforallageranges.Manyofthemoreruralcommunitiesdescribedthedifficultyinobtainingandretainingtherapists.
Participantsalsoidentifiedinabilitytofindservicesfortheirfamilymembers,especiallynon‐healthcarerelatedservicessuchas:
Livingskillsclasses Transportationservices Job/employmentwhichwillnotjeopardizeassistance SocialClassesorPrograms SportsPrograms DanceClasses ArtClasses Physicalfitnessprograms
Access to Accurate Information
Participantsidentifiedtheneedtohaveaccurateinformationprovided.Manyparticipantsrecognizedduringthefocusgroupsthatinformationtheyreceivedabouthealthcare,schools,legal,DDwaiverandotherserviceswasverydifferentthanwhatotherparticipantswerereporting.
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What age group is there the greatest need for services?
Asthesurveyresultssuggest,participantsgenerallyagreedthatoncetheirfamilymemberwasnolongerintheEarlyInterventionProgramservicesdeclined.Theneedsoftheirfamilymemberchangeddependentonwhatagerangetheyfallin.Participantsoftendescribedtheseagerangesastransitionalperiods.Theyoftendescribedthatduringthetransitionalperiod,whenaccesstoservicesisgreatlyneeded,findingtheservicestomeettheirneedswasdifficult.Commontransitionalperiodsinclude.
Ages4to6
ContinuedaccesstothetherapythatwasprovidedinEarlyIntervention. Assistanceforfamiliesduringthistime,includingdaycarefortheirfamilymember. AccesstophysiciansthatcanworkwithindividualswithDownsyndrome. Milestonesinformation:ParticipantsidentifiedtheneedforinformationaboutwhatmilestonestheirchildwithDownsyndromeshouldmeetasopposedtoanormallydevelopingindividual.Forexample,informationaboutPottytraining,walking,talkingandreading.
Elementary/Middle/HighSchool
Therapy,whichismandatedthroughschools,islimitedanddependentontheschoolandschooldistrict.Schoolsystemsacrossthestatedonothaveanadequatenumberoftherapists.
Informationabouteducationalrights.HowtosuccessfullynavigatetheIEP(IndividualEducationPlan).
Milestonesinformation:ParticipantsidentifiedtheneedforinformationaboutwhatmilestonestheirchildwithDownsyndromeshouldmeetasopposedtoanormallydevelopingindividual.Forexample,puberty,reading,pottytrainingandverbalcommunication.
“SchoolAgedChildren:TaosCountydoesn’thaveanyofthefunandenrichingprogramsthatAlbuquerquehas(Horsebackriding,theaterclasses,etc.).AlldisabledkidsinTaosCountyarelumpedintoonecategory.TheonlyactivityopentothemisSpecialOlympicsandforthePeñascoCommunitythatstartedjustthispastyear.”
Post‐SecondaryNeedsParticipantsoftendescribedthistransitionwithincreaseddifficulty.“Servicesdropoffimmediatelyafterindividualsleavetheschoolsystem.Interimservices/supportsare
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neededwhilepeopleforaDDwaiverallocation.Oftentimes,peopleareontheDDwaiverwaitinglistformanyyears.”Participantsexpressedconcernsabouttheirfamilymemberstransitionfromaschooldesktothecouchwithoutaccesstoservices.
Meaningfultrainingoreducationalprograms. Transitionalliving Independentlivingskills Adultrespite AccesstotheDDwaiver Guardianshipissues Financialconcerns Abilitytoearnincomeandstillqualifyforservices
What age group is there the best range of services available?
Participantsgenerallyagreedthatthebestrangeofservices,ineachcommunity,istheEarlyInterventionprogram,frombirthtothree.“EarlyInterventionservicescanhelpaparentlearnhowtoprovidecare.”EarlyInterventionProgramsprovide:
Moretherapistsofalltypes Individualrelationshipw/family Programsanddaycaretotakechildrento Respitecare PT‐neckexercises,muscletone,PTbasedintheneedsoftheirfamilymember Speechtherapy Socialinteractiontodevelopskills
Althoughparticipantsgenerallyagreedthatthiswasthebestagegrouptheservicesdescribedbetweenthevariousprogramsaroundthestatevariedwidely.Parentscommentedthat“earlyInterventionisverysupportive.Theyhelpchildrenwithoneononeandalsohelpwithsupportingfamiliesinconnectingtootherservicesandfamilies;whenchildrengetolderthereislittlesupportintheschoolsalongwithlowexpectationsandlittleopportunityforthesechildrentoliveindependently,contributetosocietyandbeabletomakereallifefriendships.”
Oneprogram,inaruralcommunity,wasspokenofhighlythroughoutthestate.Participantsdescribedthisagencymeetingwiththemwithin24hoursoftheirchild’sbirth,providingaccurateinformationaboutlocalandstateresources,andaccurateinformationabouttheDDwaiverandothersocialservices.
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Recommendations
Thecaregiverweb‐basedsurvey,providerweb‐basedsurvey,focusgroups,personalinterviewsandnationalresearchidentifiedseveralareasofneedforindividualswithDownsyndromeinNewMexico.Thefindingsfromthesurveysandfocusgroupscloselyechoedtheinformationgatheredthroughthepersonalinterviewsandnationalresearchconductedforthisproject.Thefindingsresultinthreerecommendations:centralizedclearinghouseinformationregardingallaspectsinvolvedinthecare,supportandeducation,establishaDownsyndromeclinic,andtrainingandeducationforhealthcareprofessionals,educatorsandserviceproviders.
1) Develop a centralized clearinghouse of information regarding all aspects involved in the care, support and education of individuals with Down syndrome for families, caregivers and service providers
Caregivers,familiesandprovidersneedthehaveaccesstoaccurateinformation.Informationprovidedtofamilies,caregiversandproviders,regardingallaspectsinthecare,supportandeducationofindividualswithDownsyndrome,isoftenmissinginformationorinaccurate.Thisone‐stop‐shop,clearinghouseshouldhaveuptodate,accurateandaccessibleinformation.Participantsfromthefocusgroupsdescribedthiseitheraweb‐basedresourceoraresourcecenterwithasocialworkersavailable.Manyfeltthathavinghumancontactwouldbehelpful,providingahumanconnection.However,participantswereconcernedaboutthesustainabilityofaresourcecenter.Participantsbrokedownthetopicsthatthiscentralizedclearinghouseshouldhaveinformationoninthefollowingcategories:
Families‐listsoffamiliesintheircommunitythatotherfamilieswithindividualswithDownsyndromecancontact.
Transitionalages:Informationpertinenttothefollowingtransitionalages:pre‐natal,birth,ages0to3,elementary,middle,highschool,transitiontoadult,independentliving,seniorissues.Participantsidentifiedthesegroupsashavinguniqueneeds.
LegalInformation:InformationaboutfamiliesandindividualswithDownsyndromelegalrights,educationalrights.Informationaboutguardianship,financialinformationassociatedwithaccesstotheDDWaiverandsocialprograms
MedicalProfessionals‐listsofmedicalprofessionals,whoaretrained,provideexcellentcareorspecializedservices.
SocialServiceProviders:Agenciesthatcanprovideservicessuchasrespitecare,assistancewithobtainingcasemanagers,andcommunityservices.
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Educators‐informationforeducatorswhoworkwithindividualswithDownsyndrome.NetworklistforfamiliestolearnofpromisingpracticesintheeducationofindividualswithDownsyndrome.
Communityinformation.GeneraleducationforthecommunityaboutindividualswithDownsyndrome.
2) Establishment of a Down syndrome Clinic ,attached to the University of New Mexico Hospital, Center for Development and Disability.
Establishaclinic,whichcouldprovideamultidisciplinaryapproachforindividualswithDownsyndromefrompre‐natalthroughseniorcare.Theclinicshouldprovidegeneralmedicalcare,referralsandconnectionswithspecialistswhenneededandprovideresources,advocacy,andsupportstoallfamiliesofindividualswithDownsyndrome,dependingontheirindividualneeds.TheclinicshouldincludemedicalprofessionalsandsocialworkerswhocanprovideaccurateinformationaboutresourcesandservicesavailableTheDownsyndromeClinicshould:establishprogramsthatprovidepeersupportthroughoutthestate,establishprogramsthatcanprovidehealthcare(medical,physicaltherapy,etc.)andservicesthatovercomethechallengesofruralcommunities,andpotentiallybeattachedtotheUniversityofNewMexicoHospital.
3) Training and education regarding all aspects involved in the care, support and education of individuals with Down syndrome for healthcare professionals, educators and service providers.
Accesstoaccurateinformationregardingallaspectsinthecare,educationandsupportofindividualswithDownsyndromeislimited.Oneofthemostcommonthemeswasthevaryinginformationthatisprovidedtofamilies.Familiesexpressedtheneedforhealthcareprofessionals,educatorsandserviceproviderstoreceiveaccurateanduptodatetrainingandeducationregardingDownsyndrome.Targetaudiencesincluded:educators,theschoolsystem,doctors,nurses,therapists,variousmedicalprofessionals,andsocialserviceprograms.
TheserecommendationsaimtoaddresstheneedsandservicegapsforindividualswithDownsyndromethroughoutNewMexico.Theserecommendationsareadirectresultoftheresultsoftheweb‐basedsurveysandfocusgroupinterviewsandinformationregardingnationalresearchandbestpractices.
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QuickReferenceMatrix
Solutions/PromisingPractices
IdentifiedNeed Care/Coordination Education
NeedforPrograms/practicestobesupportedbylegislation(local/national)andfunding.Thisneedexistsateverylevel–local,nationalandinternational
LegislatorsneedtobeeducatedbyadvocacygroupsandconstituentsregardingneedsoftheDownsyndromeCommunity.
ComprehensiveSpecialNeedsPlanningtoincludefinancialandlegalservicesforapersonwithDownsyndromeatthepovertylevel.ThishasbeenconsistentlyidentifiedasaprioritybyfamiliesintheDScommunity.
Familyadvocatesandtrainedcarecoordinatorscaneducateindividualfamiliesaccordingtoidentifiedneeds.
Workshopscanbedeveloped/offeredtotheDScommunitybylocalserviceorganizations.Booksarecurrentlyavailableonthesubject.
NeedforPrograms/PractitionersandserviceproviderstospecializeinissuesassociatedwithDownsyndrome.“Blindinclusion”vs.individualizedservicestoaccommodateandtotakeintoconsiderationspecializedneeds(local)particularlywithregardtoadvocacyservicesandmedicalservices
ProvideeducationandtrainingtoserviceprovidersregardingspecializedneedsofindividualswithDS.
CreatespecializedDownsyndromecarecoordinatorpositionswithinserviceprovider/advocacyorganizations
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Needforservicestoaccommodate/supportfamily/siblingsandcaregivers(local/national)
ToassistindefiningthescopeoftheproblemincludingidentifyingpersonswithDownsyndrome.“NMisblindtothedataaboutindividualswithDownsyndrome.Wecan’tmakepeoplebelievethatweneedmorespecializedservicesifwedon’thavethedatatobackitup.”Knowingwhothepeopleareguidestheresearch(anddefinesscopeoftheproblem).Havingaregistryhelpsyoufindpeoplewhomaybenefitfromtheresearchandpeoplewhomayparticipateintheresearch.Thisneedoccursateverylevel‐local,nationalandinternational
Centralizedregistry,databaseandBiobank
ProvideassistancetoindividualswithDownsyndromeandtheirfamiliesandcaregivers,healthcareprovidersinfinding,evaluating,andusinghealthresearchfindingstohelpinprevention,diagnosis,andmanagementofmedical,psychologicalandoralhealthconditionstoinformtreatmentdecisionsbyindividualsandtheirfamilies
EnhancevisibilityofDownsyndromeresearch(i.e./.Communityandfamilypartnerships)
Centralizedregistry,databankandBiobank
Educatecommunityaboutspecializedneeds/programsforindividualsandfamilies/caregiversincommunity
NeedforfocusedandtestedmethodsofprovidingeducationalservicestopersonswithDownsyndrome.
SpecialNeedsApplications–waystousetheIPadandIPhoneathome,inactivitiesofdailyliving,inaneducationalenvironmentandtosupportphysicianswithtreatmentanddiagnosisthroughoutlifespan.Videomodelingisaneffectivewayofteachingthispopulationfrom3‐18years.
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CommunityinvolvementinshapingthefutureforindividualswithDownsyndromeincludingpre‐nataltestingandmedicalcare‐awarenessandeducation–impactwecanallhavebypromotingpositiveaspectsofDownsyndrome.
Educationandawarenesscampaigntohealthcareprofessionals/trainingformedicalpersonnelinvolvedincaringforexpectantmothers
Planningfortransitionfromhighschooltoadulthood–needformorespecializedandsupportiveservicesandprograms
NeedfornetworkingandsocialsupportforindividualswithDownsyndromethatpromotesqualityoflifeandhealthysocialinteraction
The“CoolClub”–topromoteandcreateanenvironmentforindividualswithdownsyndromeandtheirfamilies‐tohavearichsociallife,socialnetworkingandinteractionwithotherfamiliesbypartneringwithotherparentsandcaregiverstocreatea“socialclub.”
1. NeedformedicalservicesthatareinformedregardingthespecializedneedsofindividualswithDownsyndromefrompre‐nataltodeath.
2. NeedforencouragingagenciesandhealthcareprofessionalstotreatpeoplewithDown
RegionalspecializedclinicssuchastheChicagoDSClinicatLutheranorSieCenterforDownsyndromeatDenverChildren’sHospital.Thereare16specialtyclinicsintheU.S.,andothersexistintheMiddleEast,theNetherlands,Slovakia,Sweden,Austria,Spain,Brazil,Argentina,Quebec,Japan,Nigeria,Israel,
EducatemedicalpersonnelregardingtheidentificationandtreatmentofspecialmedicalneedsoccurringintheDownsyndromeCommunity.
ProvideeducationandtrainingtohealthcareprofessionalsincrediblestandardsofcarebasedonscientificevidencetoindividualswithDownsyndrome
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syndromeaccordingtoageandhealthneeds–notjustfortheirdisability.
3. Needtoincreasenumberofphysicians,clinicalpsychologists,andalliedhealthcareprofessionalswhohaveappropriatetrainingandexperienceintreatingadults,adolescents,andchildrenwithDS,includingthosefromsocioeconomically,culturally,rural,andlinguisticallydiversecommunities.
Pakistan,India,China,andAustralia.
ConsultwithindividualswithDS,theirfamiliesandprimaryandspecialtyhealthcareproviderstoidentifypriorityareasanddevelopstandardsofcareforensuringandimprovingthequalityoftheirhealthcareintheirrespectivecommunities.
ExpandeducationtoothertypesofhealthcareprofessionalsusedinprovidinghealthcaretoindividualswithDSincludinggeriatric,pediatricandothernursepractitionersandnurses,physicianassistants,dentalhygienists,andbehavioraltherapists.
Supportsupplementaryservicestohelpphysicians,dentists,psychologists,andotherprovidersandorganizedhealthservicesinprovidingcaretoindividualswithDS.
Ensurethatadaptiveequipmentandassistivetechnologiesareavailableinurban,rural,andremotecommunitiesforuseatclinicalsiteswhereindividualswithDSreceivehealthcare.
Identifymultidisciplinaryexperts/advocategroups/familymembers/serviceprovidersworkingacrosssystemstodevelopstandardsofcareandeducationmaterials
Needforincreasedopportunitiesforparents,caregiversandindividualswithDownsyndrometoconnect,interact,socializeandsupportoneanotheronaregularbasis
AstatewideCoalitiontoimprovecareandcoordinationstatewidebyimprovingcommunicationamongfamiliesandserviceprovidersdecrease
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(thatalsoincludesmembersfromallDownsyndromestatewidenetworks–andisfinanciallysupported
fragmentationofservicesandofferopportunitiesforsocialization(toincludeassistancewithtransportation,foodandactivities.CoalitionmadeupofaBoardofDirectorswithamissionstatementthatinvolvescommunity,inclusionandnetworking
HoststatewideDSconference
“Changebydesign”–creatingabetterworldforindividualswithDownsyndromebyapplyinga“humancentereddesign”andputtingtheindividualwithDownsyndromefirst–ratherthantryingto“fit”themintosystemsthatalreadyexistbutwerenotnecessarilydesignedwiththeminmind.
NeedforfocusedandtestedmethodsofprovidingeducationalservicestopersonswithDownsyndrome–thisisalocal,nationalandinternationalneed
Establishlocal,regionalandnationalawardsthatrecognizeexcellenceinprovidingservicestoindividualwithDownsyndromeandtheirfamilies
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Theneedtopromote(andensurecontinuityofcare)healthylifestylesforindividualswithDownsyndromeacrossthelifespan
Identifyapackageofhealthcare/self‐care/healthpromotionservicesforindividualswithDSthatwillproducegoodoutcomesintermsofhealthmaintenance,managementofillness,functionality,andlifegoalsacrosstheindividual’slifespan
Develop,evaluate,anddisseminatecontinuingeducationcurriculaforserviceprovidersinthecareofindividualswithDownsyndrome.Suchcurriculawouldbebasedonappropriatestandardsofcareandincludetrainingopportunitiesthatreflectunderstandingandrespectfordiversecultures
Supportdevelopmentanddisseminationofeffectivetrainingmodulesininterdisciplinarypractice.Designmodulesshouldincludesocialworkers,familymembers,individualwithDS,teachers,personalcareattendants,jobcounselorsetc.,
MakeaccesstoservicesforindividualswithDSlesscomplicatedfortheirfamiliesandcaregivers,whetherinurban,rural,orremotecommunities(remove“unmanageablesystemsasconstraintstoservice”).
Needforbetterstatewideandlocalservicecoordination,communication,lessfragmentationamongservices/serviceproviders,moreinformationdedicatedto
Ensurethatindependentservice/carecoordinatorswhoworkonbehalfofclientstolocateandensureaccesstoandcoordinationofservicesareavailableforindividualswithDSwhorequiresuchassistance
Supporteducationofmultidisciplinaryteams,includingmobileteamstobringservicestoindividuals’homes,schoolsandothernon‐clinicalsites(toalsoaddressuniquechallengesinstateincludingtransportationandaccessproblemsinbothurbanandruralsettings,lackofappropriatelytrainedserviceproviders,culturalandlanguagebarriers)
Revieweligibilitytoreduce
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DS,improveddata needformultipleapplicationsandmultipledeterminationsforeligibilityforservices.Promotetheuseofpresumptiveeligibility,onceinitialeligibilityisestablished,forservicesthroughMedicareorSSI/Medicaid
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ResourcesandSupplementaryMaterials
AnecdotalCommentaryMelissaEwer,attorney,CatholicCharities,(providesfreelegalrepresentationtoimmigrantsinNewMexicoundertheViolenceAgainstWomenAct).Challengesfacingparentofdisabledchild:influenceoflanguagebarriersonaccesstoservice,abuserblamingvictimforhavingdisabledchild,lackofspecializedprogramsincountryoforigin,lackoflegalstatusandabilitytoaccesshealthcareservicesfordisabledchild.
Dr.JesusGalvan,DDS,SpecialSmiles,DeltaDentalPlanofNewMexico;SpecialOlympicsofNewMexico,HealthyInitiativeTeam.DentalcareforindividualswithdisabilitiesandtheSpecialNeedsCertification.
Dr.RayLyons,DDS,FADPD,DABSCD,DentalDirector,NewMexicoDepartmentofHealth.SpecialNeedsDentalClinic.”HiAnn,Ienjoyedspeakingwithyoualsoandfindyourstudyinteresting.Meaningfuldataishardtocomebyinthisfieldbecauseresponders,needs,andperceptionsvarysobroadly(frommyownexperienceatanationallevel).IhaveattachedwhatIbelieveisthecurrentlistofdentistswhohavecompletedthemodules/trainingforcertificationwithNMMedicaidforanenhancedfeewhentreatingindividualswithdevelopmentaldisabilities.AlsoIhaveattacheda“BestPractices”citationthatdescribestheNMinitiativethatnumerousstateshavelookedtoasanexamplefortheirownefforts.Oddlyenough,IhavebeenaskedtoprovidetrainingtomoredentistsoutofNMthantothoseinstate.SomedentistsonourcertifiedlisthavestoppedseeingthesepatientsduetohassleswithMedicaid,orbecausetheyhavebecomeoverburdenedbypatientaccessdemands.Ichronicallyreceivecomplaintsfrompractitionersastothedifficultiesindealingwithagencyandcaregiverdemands(paperwork,legal,noncompliance,etc.)and/orindifference.ButIfindthepopulationtobechallengingandenjoyabletotreat.WeNEVERhaveaboringday!IfIcanbeofassistancepleaseletmeknow..DES34005NMspecialneedsdentalcode.pdf”
TanyaBaker‐McCue,Director,FamilyCommunityPartnershipDivision,NM/LENDFaculty,CenterforDevelopmentandDisability(CDD).TheCDDispartofanetworkof67UniversityCentersacrosstheUnitedStatessetupaspartofDevelopmentalDisabilitiesAssistanceandBillofRightsActprovidinginterdisciplinaryeducation,distancelearningandweb‐basedcourses,appliedresearch,policyanalysis,interdisciplinaryhealthcareandclientservices,andInformationNetwork(providingcomprehensivelibraryservicesandcommunityresourceconnectionsforindividualswithdisabilitiestheirfamilies,andprofessionals).
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NadineMaes,motherofsonwithDownsyndrome,FamilySpecialist,CDDInformationNetwork,Self‐DirectedFamilySupportProgram.CurrentneedsoffamiliesofindividualswithDownsyndrome;navigation,accessandadvocacyenhancingaccesstoservicesbydiversepopulations;inclusiveeducation;healthcareasapriority;educationofhealthcareprofessionalscritical;prenataldiagnosisandaccesstoaccuratemedicalinformationandearlycontactwithotherfamilieswithmemberswithDownsyndrome.
CristineMarchand,ExecutiveDirector,NewMexicoDevelopmentalDisabilitiesPlanningCouncil.Usingspecialneedsapps,Smartphones,IPadtechnologyforlearning;UniversalDesignforLearning(designofinstructionalmaterialsandmethodsthatmakescurriculumaccessibletoindividualswithwidedifferencesintheirabilities).
ClaudiaMedina,ExecutiveDirector,EnlaceComunitario(asocialjusticeorganizationledbyLatinaimmigrantsinCentralNewMexico,providingdirectservicestoSpanish‐speakingvictimsofdomesticviolenceandadvocatesforrightsofLatinoimmigrantsandtheirchildren).
YokoReece,motherofadultdaughterwithDownsyndrome.Concernsraisingdisabledchild:financialsupportafterdeathofparent,educationandtransitiontraining,lackofserviceswithoutDDwaiver;raisingdisablechildinJapan;findingcompetenthealthcareproviderswithknowledgeaboutDownsyndrome.
NkaziSinandile,Boardmember,NewMexicoWomen’sGlobalPathways(Empoweringrefugeewomentogainself‐sufficiencythrougheducation,economicdevelopment,andstrengthenedlifeskills).PresentationtoBoardonPlanningGrant,September7,2011.
SherrySpitzer,ExecutiveDirector,NewMexicoAsianFamilyCenter(providescomprehensiveandintegratedsocialservicestotheimmigrantAsianpopulation,facilitatingaccesstoeducational,legalandsocialprograms,clearinghouseofinformationandreferrals).Asian,MiddleEastern,PacificIslander,populationsinNewMexico.
JeanetteTrancosa,ExecutiveDirector,EPICS(EducationforParentsofChildrenwithSpecialNeeds,providingtraining,information,resourcesandsupportforparents,grandparents,familymembersandcaregiversofIndianchildrenwithdisabilities).RaisingandsupportingachildwithdisabilitiesintheNativeAmericancommunity;importanceoftrainingtoeducateandsupportparentsinnavigatingeducationprogramsforchildrenwithspecialneeds;accessto,andinfluenceofdownsizing,inhealthcareprogramsservicingNativeAmericans.
RonaldaWarito‐Tome,ParentTrainingSpecialist,EPICS.“CircleofCourage”and“CommunityMapping”toolsforassistingandtrainingparentsinidentifyingandutilizingcommunityresourcestosupportchildrenwithspecialneeds;raisingandsupportingachildwithadisabilityintheNativeAmericancommunity.
40
JohnnyWilson,ExecutiveDirector,ParentsReachingOut,(providesstatewidenetworkingopportunitiesforfamilieswithotherfamilieswhohavefacedsimilarchallengeswitheducationandhealthcaresystems;trainingandmentoringforfamiliesincommunitiesbyvolunteering;provideinformationandparenttraininginspecialeducation,advocacy,recordkeeping;FamiliesasFacultypromotesfamilyleadershipskillsandprofessionallearningopportunitiesforfutureteachersanddoctors).Challenges:meaningfulinclusionwithsupportsysteminplaceforstudentswithdisabilities,educationandtrainingforeducationassistants,developingandimplementingsuccessfultransitionprogramsinschools.
KellyHafer,MilitarySpecialNeedsNetwork(networkprovidesinformationandadvocacyformilitaryspecialneedsfamilies,assistfamiliesinnavigatingthemilitary'sExceptionalMilitaryFamilyProgramandtheExtendedCoverageHealthcareOption)."Militaryfamiliesinthemoreisolatedregions,suchasthosestationedinNewMexico,maynotbeawareofthemedicalprogramsofferedtofamilieswithdependentslivingwithspecialneeds.Ifthesedependentsarebeingtreatedbycivilianhealthcare,thehealthcareprovidersthemselvesmaynotbeawareoftheseprograms...somilitaryfamiliesstruggletofindandaffordspecializedmedicaltreatmentintheirarea."Asmotheroftwochildrenwithspecialneeds,"...oneofthereasonswearestayinginthemilitaryistheservicesaresogood."Accesstoinformationaboutprogramsattheearliestopportunityiscritical.
DarcyHanson,motherofadultsonwithDownsyndrome.“It’sabouttimesomeoneislookingatthis!WemovedtoNewMexicofromWyomingandWyominghaditsacttogether.WyominghadtheGovernor’sCommissiononDisabilities.Itwasapaidposition.Youcouldcallonenumberandgetyourquestionsanswered.”
BrianChicoine,MD.AdultDownsyndromeCenterofLutheranGeneralHospital.DiscussedcreationofTheAdultDownsyndromeCenter,challenges,needforcommunitysupportfromDownsyndromeNetworksandparentadvocates,medicalappsforstatewideuse,andchallengeswithstart‐upfunding.August2011.
DennisMcGuire,PhD.AdultDownsyndromeCenterofLutheranGeneralHospital.DiscussedcreationofTheAdultDownsyndromeCenterandchallengesinNewMexicoregardinghealthcare,ruralnatureofstate,needformentalhealthservicesandexpertiseandintroducedideaof“mobilehealthcareunit.”November2011.
MikeSullivan.Discussedcreationof“SavingDowns”–advocategroupinNewZealandforthelifeofpeoplewithDownsyndromefromconceptiontonaturaldeath.FormedinresponsetoNewZealandGovernment’snewstatefundedeugenicantenatalscreeningprogramthattargetsandidentifiesunbornchildrenwithDownsyndromeforselectiveabortion;challengesandfears.November.2011.
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KiloloBrodie,Phd,MSW.ChallengesofbeingasingleparentofchildwithDownsyndrome,particularlywithregardtohealthcare,medicalneedsofchildrenwithDownsyndromeanddirectcorrelationbetweenservicechallengesandethnicityandsocioeconomicstatus.DiscussedneedformorecommunityinvolvementandneedformoreculturalresourcesforchildrenwithDownsyndromeandtheirfamilies,NationalDownsyndromeConference.2011.
Dr.MichaelBrodie,GrandparentofchildwithDownsyndrome.DiscussneedforincreasedsocialpromotionofindividualswithDownsyndrome,familysupportandmedicalandtimechallengesofraisingachildwithDownsyndrome.Emphasizedthatfamilyloveandcommunityinvolvement,educationandsupportis“critically”importantinraisingachildwithDownsyndrome.NationalDownsyndromeCongressConference2011.
ShariCordova,President,RioGrandeDownsyndromeNetwork.DiscussmembershipofRioGrandeDownsyndromeNetwork,needforincreasedfundingtoimprovelocalservicesandnetworkinvolvement.2011.
JanieLeeHall,SpecialOlympicsRegionCoordinatorforWesternNM.Challengesofspecialization,ruralissues,educational,cultural,medical,transportationandsocializationissuesforfamiliesandchildrenwithDownsyndromeinWesternRegionofstate.October2011.
MarkW.Leach,J.D.ParentofChildwithDownsyndrome.ThestateofPre‐nataltesting,importanceofeducationandsocialawarenessaboutDownsyndrome.Mr.Leachstatedthat,"accordingtoreportinCopenhagenPost,DenmarkwillbeDownsyndromeFreeby2030.”2012.
KathyOlive,FormerChair,AdvisoryBoardforAdultDownsyndromeClinicUniversityofAlabamaatBirmingham,ParentofChildwithDownsyndrome.IdentifiedmostimportantneedofindividualswithDownsyndromeinAlabamatobemedicalcarespecializationandtraining,ParentAdvocatesDownsyndrome(PADS)approachedUofA,startedDownsyndromeMedicalClinic,funding,politicalissues,needforstrongsupportbylocalDSnetwork,parentchallenges,educationofhealthcareprofessionalsasapriority,andincreasedsocializationforchildrenandadultswithDownsyndrome.2011.
JennyYates,Chair,AdvisoryBoardforAdultDownsyndromeClinicUniversityofAlabamaatBirmingham,ParentofChildwithDownsyndrome.Groupofparents,ParentAdvocatesDownsyndrome(PADS)approachedUniversityofAlabamatobesiteforDownsyndromeClinic.Parentgroup(PADS)services700families‐currentlyPADSprovidesfundraisingfornewclinic,guidesclinicinpractice,staffhiring,patientsatisfactionandgeneraldirectionofclinicdevelopment.2012.
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Dr.JoseFlores,Director(andFounder)MassachusettsGeneralHospital'sDownsyndromeClinicforAdultsandAdolescentswithDownsyndrome,BrotherofsisterwithDownsyndrome.ProviderofalladultservicestoindividualswithDownsyndromeinNewEngland(clinicnowhas5medicalDoctorsandotherspecialists‐mostdifficulttofindwasaPsychiatrist).Mr.FloresisanEndocrinologistandresearcheringenetics.StaredclinicafterrealizingIndividualswithDownsyndromenotreceivingmedicalcareinyoungadulthoodb/coflackofhealthcarespecializationforadultswithDownsyndrome.Mr.Floresstates,"peoplewithDownsyndromehavespecialneedsfromaspecialtyperspective,oftenprimarycaregiversnotequippedtorecognizemedicalissuesparticularlywithadultssotheyoftendropoutofsystemofcarewhentheybecomeyoungadults.ThisclinicisanabsolutenecessityforadultswithDownsyndrome."
“NMisblindtothedataaboutindividualswithDownsyndrome.Wecan’tmakepeoplebelieveweneedmorespecializedservicesifwedon’thavethedatatobackitup.”–Takenfromatelephoneinterviewwithindividualwhopreferstoremainanonymous.
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Telephone/PersonalInterviews
BrianChicoine,MD.PersonalInterview.ChicagoHospital.August2011
DennisMcGuire,PhD.PersonalInterview.November2011.
TanyaWheeler.PersonalInterview.SpringfieldMass.(WesternMass.TeachingHospital).2011.
MikeSullivan.PersonalInterview.SavingDowns,NewZealandNovember.2011.
KiloloBrodie,Phd,MSW.PersonalInterview.NationalDownsyndromeConference.2011.
ParentsReachingOut‐JohnnyWilson,AndreaLeon,ProjectCoordinator/Dreamcatchers.2011.
NMAsianFamilyCenter‐SherrySpitzer.PersonalInterview2011.
CristineMarchand‐ED,NMDevelopmentalDisabilitiesPlanningCouncil.PersonalInterview.2011.
ShariCordova‐RGDSN.PersonalInterview.2011.
ChristineVining,M.S.CCCSLP‐ProgramManager,NeurodevelopmentalServices.2011.
EPICS‐JeanetteTrancosaED,RonaldaWarito‐Tome.PersonalInterview.2011.
NadineMaes,PersonalInterview,2011.
YokoReece,PersonalInterview,2011.
CDD‐TanyaBaker‐McCue,PersonalInterview,2011.
Womens’GlobalPathways‐NkaziSinandile,PersonalInterview,2011.
HonorableStanWhitaker,PersonalInterview,2011.
ClaudiaMedina‐EnLaceCommunitario,PersonalInterview,2011.
MelissaEwer‐CatholicCharities.PersonalInterview.2011.
JanieLeeHall–SpecialOlympicsRegionCoordinator,PersonalInterview.2011
Dr.RayLyons,7905MarbleAve.NE.PersonalInterview.2011.
Dr.ShellyL.Fritz,7520MontgomeryBlvd.NE,Albuquerque.PersonalInterview.2011.
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Dr.GaryCuttrell‐UNMHealthScienceCenter,DivisionofDentalServices.2011.
Dr.KimberlyM.Espinosa,UNMHeightsDentalPractice,Albuquerque.2011.
LindaChan‐Rapp‐Editor,LightattheEndoftheTunnel.PersonalInterview.2011.
DebbieRevels‐ExecutiveDirector,DownsyndromeAssociationofJacksonville,Fl.2011.
JuneBascom‐ProgramDevelopmentandPolicyAnalyst,DivisionofDisabilityandAgingServices,DepartmentofDisabilities,AgingandIndependentLiving,Waterbury,VT.2011.
ColleenHayles‐CTStateDepartmentofEducation,BureauofSpecialEducation,Hartford,CT.2011.
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Local,National,andInternationalResearchReferences
Prenatal
AmericanCongressofObstetriciansandGynecologists(ACOG),NewRecommendationsforDownsyndrome:ScreeningShouldBeOfferedtoAllPregnantWomen,NewsReleaseJanuary2,2007.
Buckley,Frank,Buckley,Sue.Wrongfuldeathsandrightfullives‐screeningforDownsyndrome.DownsyndromeResearchandPractice,Vol.12,Issue2,October,2008.
Meredith,Stephanie.DownsyndromeConsensusGroup.UnderstandingADownsyndromeDiagnosis.©2008‐2011Canister,DistributedbyLettercase.
DeliveringADownsyndromeDiagnosis.©2009‐2011Canister.DistributedbyLettercase.CopiesmaybeorderedatLettercase.org.
Reynolds,Tim.TheTripleTestasaScreeningTechniqueforDownsyndrome:ReliabilityandRelevance.InternationalJournalofWomensHealth.2010;2:83‐88.
Skotko,Brian,2006.ContinuingaPregnancyAfterReceivingaPrenatalDiagnosisofDownsyndromeinSpain.Progresos en Diagnostico y Tratamiento Prenatal 17:189‐92.
Skotko,Brain,2005.PrenatallydiagnosedDownsyndrome:Motherswhocontinuedtheirpregnanciesevaluatetheirhealthcareproviders.American Journal ofObstetrics & Gynecology,192:670‐77.
TheNationalDownsyndromeSociety(NDSS)andLettercaseCelebratetheLargestPrenatalMedicalOutreachCampaignaboutDownsyndromeinUSHistory.PressReleaseAugust9,2011.
Postnatal
Meredith,Stephanie.DownsyndromeConsensusGroup.UnderstandingADownsyndromeDiagnosis.©2008‐2011Canister,DistributedbyLettercase.
DeliveringADownsyndromeDiagnosis.©2009‐2011Canister.DistributedbyLettercase.CopiesmaybeorderedatLettercase.org.
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Muggli,EvelyneE,Collins,VeronicaR,Marraffa,Catherine.Goingdownadifferentroad:firstsupportandinformationneedsoffamilieswithababywithDownsyndrome.2009.Medical Journal ofAustralia,190(2):58‐61.
Skotko,Brian,Canal,R.2005.PostnatalSupportforMothersofChildrenwithDownsyndrome.Mental Retardation,43:196‐212.
Skotko,B,2005.MothersofChildrenwithDownsyndromeReflectonTheirPost‐natalSupport.Pediatrics.115:64‐77.
Skotko,BG,Levine,SP,Goldstein,R.2011.HavingasonordaughterwithDownsyndrome:Perspectivesfrommothersandfathers.Am J GenetPartA155:2335‐2347.
Health
Bittles,AH,Glasson,EJ,Clinical,SocialandEthicalImplicationsofChangingLifeExpectancyinDownsyndrome.Developmental Medicine & Child Neurology.2004.46:282‐286.
Rhoades,RA,Scarpa,A,Salley,B.2007.TheImportanceofPhysicianKnowledgeofAutismSpectrumDisorder:ResultsofaParentSurvey.BMC Pediatrics.7:37,doi:10.1186/1471‐2431‐7‐37.
Smith,DavidS.2001.HealthCareManagementofAdultswithDownsyndrome.Am Fam Physician.Sep15;64(6);1031‐1039.
Law
IDEA‐theIndividualswithDisabilitiesEducationAct.
http://nichcy.org/laws/idea
TitleIandVoftheAmericanwithDisabilitiesActof1990(ADA).U.S.Equal
EmploymentOpportunityCommission.
http://www.eeoc.gov//laws/statutes/ada.cfm?renderforprint=1
InformationRegardingtheKennedy‐BrownbackBill;ThePreandPostnatallyDiagnosedConditionAwarenessAct.DownsyndromeConnection.
http://www.downsyndromeconnection.com/kennedybrownback.htm
http://www.opencongress.org/bill/110‐s1810/text
47
Bauer,Patricia.CongressOKsKennedy‐Brownbackdisabilitydiagnosisbill.News&CommentaryonDisabilityIssues,2008/09/25.
Robinson,Homer.2007.AReportonOff‐ReservationNativeAmericanAccesstoHealthcareinAlbuquerque.NMCenteronLawandPoverty.
NativeAmerican
Vining,Christine.2011.SupportingtheCommunicationNeedsofYoungNativeAmericanChildren.EPICSSummerWorkshoppresentationpowerpoint.
NewMexico
NewMexicoDepartmentofHealth.2011.CompleteIndicatorProfileofBirthDefects:PrevalenceofTrisomy21(Downsyndrome)per10,000LiveBirths.
RetrievedThu,21July201111:04:51fromNewMexicoDepartmentofHealthWebsite:http://ibis.health.state.nm.us
Surveys
AustinIndependentSchoolDistrict.SurveyonSpecialEducationServices.2009.
ConnecticutSpecialEducationParentSurveyQuestionnaire.AppendixB:2004‐2005,AppendixE:2009‐2010
FloridaDepartmentofEducation.ParentSurvey‐ExceptionalStudentEducation.
VermontConsumerSurveyProject©.DevelopedbySusanL.ColbertandSaraN.Burchard,PsychologyDepartment,UniversityofVermont,Burlington,VT,05405.
Rhoades,RachelA.,Scarpa,Angela,Salley,Brenda.2007.Survey:AssessingtheNeedsofIndividualswithAutismSpectrumDisorderinVirginia.BMC Pediatrics.2007.7:37doi:10.1185/1471‐2431‐7‐37.
Information
InformationCenterforNewMexicanswithDisabilitiesandBabynet.DisabilityRelatedInformationandReferral.MedicaidandStateProgramTopSheets
NationalDownsyndromeConference
2011NationalDownsyndromeConference,SanAntonio,TX:
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Starta“CoolClub”SocialClubforTeensandAdults,SandraMcElwee
KeepingChildrenandAdolescentswithDSHealthy:AlltheMedicalUpdatesthatParentsNeedtoKnow,BrianSkotko,MD,MPP.
ItisnotaMetaphor….ittrulydoestakeavillagetoraiseachildwithachild(part1and2).KiloloBrodie,Phd,MSW.
LatestLegislativeDevelopments:HowTheyImpactYou!SusanGoodman,JD.
DownsyndromeRegistry,ResearchDatabaseandBiobank,EdwardR.B.McCAbePhDandLindaL.McCAbe,PhD.
PromotingHealth,Independence,SafetyandCommunityforTeensandAdultswithDS,Dr.BrainChicoineandDennisMcGuire,PhD.
WhatyourotherchildrenareThinking:SiblingIssues,BrianSkotko,MD,MPP
DSRegistry,ResearchDatabaseandBioBank,EdwardMcCabe,MD,PhD.
HowYouCanHelpYourChildorYoungAdultLiveaHealthierLife,SusanFaberMPH.
SpecialNeedsApps:GettingStarted,How‐To’sandSuccessStories,CristenReatandTriciaBrinks.
Heidgerken,AmandaD.,Geffken,Gary.Modi,Avani.Frakey,Laura.2005.Survey A of Autism Knowledgein a Health Care Setting.JournalofAutismandDevelopmentalDisorders,Vol.35,No.3,June2005.
Urquhart,Donald.2000.Hypotonia is also known as Low Muscle Tone. http://www.cdadc.com/ds/hypotonia.htm
ResourcesandSupplementaryMaterials
Local,National,andInternationalResearchReferences(Continued)
Lorenz,Stephanie.1999.Making Inclusion work for children with Down syndrome.DownsyndromeNewsandUpdateVol.1,No.4,pp175‐180
MassMutualFinancialGroup.2011.Understandingwhatitmeanstolivewithautism.
Lombardo,Angela,BA.TheDownsyndromeProgramatChildren’sHospitalBoston.2011.www.childrenshospital.org
Down syndrome Research Foundation. www.dsrf.org/programs
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Chicoine,Brian,MD.McGuire,Dennis,PhD.Rubin,Stephan,Phd.Adults with Down syndrome: Specialty in Clinic Perspectives. Dementia,AgingandIntellectualDisabilities:AHandbook.EdbyJanickiandDalton(TaylorandFrancis1999).
Murdoch,J.C.,MD,MRCGP.AsurveyofDown’ssyndromeundergeneralpractitionercareinScotland.JournalofRoyalCollegeofGeneralPractitioners.1982
Bertoli,M.Biasini,G.NeedsandchallengesofdailylifeforpeoplewithDownsyndromeresidinginthecityofRome,Italy.JournalofIntellectualDisabilityResearch.2011.
Joosa,Esther.Berthelsen,Donna.ParentingaChildwithDownsyndrome:aPhenomenographicStudy.
Landen,Michael,MDMPH.Regional Health Status Disparities in New Mexico. NewMexicoEpidemiology.Volume2011,Number2.February25,2011.
Matthews,Anne.ImpactofMedicalandTechnologicalAdvancesonSurvivalRatesofPeoplewithDisabilities.DisabilityServicesCommission.May2008.
Bittles,Alan.The four ages of Down syndrome.EuropeanJournalofPublicHealth,Vol.17,No.2,221‐225.2006.
Taylor,KimberyHayes.Down syndrome’s rewards touted as new test looms.2011.www.msnbc.msn.com
Boyse,Kyla.R.N.Siblings of Kids with Special Needs.UniversityofMichiganHealthSystem.2011
Skotko,BrianG.Levine,SusanP.2006.What the Other Children are Thinking: Brothers and Sisters ofPersons with Down syndrome.AmJMedGenetPactCSeminMedGenet142C:180‐186.
SkotoBG,LevineSP,GoldsteinR.2011.HavingasonordaughterwithDownsyndrome:Perspectivesfrommothersandfathers.AmJMedGenetPartA155:2335‐2347.
Cuskelly,Monica.Families of children with Down syndrome: What we know and what we need to know. DownsyndromeResearchandPractice–AdvanceOnlinePublication.2008.
LearningTogether:LessonsinInclusiveEducationinNewYorkCity.DownsyndromeNews,Vol.25,No.5.
50
Dykens,ElisabethM.Families of Children with Down syndrome.GeneticsandMentalRetardationsyndromes:ANewLookatBehaviorandInterventions.2000.PaulH.BrookesPublishingCo.
Smith,DavidS.MD.Health Care Management of Adults with Down syndrome.AmericanFamilyPhysician.September2001.
Chicoine,Brian.McGuire,Dennis.Development of a Clinic for Adults with Down syndrome.MentalRetardation,Vol.32,No.2,100‐106April1994.
Hart,Debra.Grigal,Meg.2006PostsecondaryEducationOptionsforStudentswithIntellectualDisabilities.www.communityinclusion.org/article.php?article_id=178
Education.DownsyndromeConnection.www.downsyndromeconnection.com/education.htm.
Skotko,BrianG.PrenatallydiagnosedDownsyndrome:Motherswhocontinuedtheirpregnanciesevaluatetheirhealthcareproviders.AmericanJournalofObstetricsandGynecology(2005)192,670‐7.
Place,Fiona.AmniocentesisandMotherhood:HowPrenatalTestingShapesOurCulturalUnderstandingsofPregnancyandDisability.M/CJournal,Vol.11,No.3(2008)
IndividualswithDisabilitiesEducationAct.Wikipedia.2011.
Dr.RayLyons,DDS,FADPD,DABSCD,NewMexicoDepartmentofHealthSpecialNeedsDentalClinicPersonalInterview.2011.
Dr.JesusGalvan.Albuquerque,NM.PersonalInterview.2011.
Rapp,LindaChan.Ed.Light at the End of the Tunnel,1999, http://ndsccenter.org/resources/documents/Light‐Tunnel‐all‐LR.pdf
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Terms/Concepts
BlindInclusion–ThisphrasereferstoincludingindividualswithDownsyndromeintoalreadyexistingprograms,withouttakingintoaccounttheirspecializedneeds.
ChangebyDesign‐Thisphrasereferstocreating/designingprogramstoaddressthespecializedneedsoftheconsumer.
