DOWN SYNDROME PLANNING GRANT HE ARC OF NEW MEXICO...The Arc of New Mexico received a grant from The...

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.

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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.

41

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.

46

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

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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:

48

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.