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What Service Coordinators Need to Know A"Mother’s"Perspective"

Meet$Braxton$•  Full"Term"5"Normal"Pregnancy"

•  Trouble"Feeding;"Low"Blood"

Sugar;"Transferred"to"NICU"

•  Feeding"Tube"placed"&"other"

testing"

•  3"Weeks"in"NICU"

•  Genetic"testing"came"back"

“normal”""

•  21"Months"of"Specialists,"

therapy,"and"genetic"tests"

•  Whole5Exome"Sequencing"revealed"rare"diagnosis"

Rubinstein5Taybi"Syndrome"

•  Rare"Disease"affects"1"in"300,000"

•  Affects"nearly"every"system"

•  Significant"Developmental"Delays"

•  Distinct"Facial"Characteristics"•  Downward"Slanting"Eyes"

•  Flat"Nasal"Bridge"

•  Broad"Thumbs/Toes"

•  Beaked"Nose"

•  Hallmark"trait:"Smile"

Tips$for$Working$With$Families$

• Meet"Families"Where"they"are"on"the"journey"

• Target"a"few"specific"

topics"at"first"

• Check"for"Understanding"

•  It’s"okay"not"to"know"all"

the"answers"

• Leave"families"with"a"

clear"plan"

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Meet$Families$Where$They$Are$• Where"are"they"in"the"

grief"process?""•  Denial"–"They"aren’t"going"to"hear"

anything"you"say"

•  Shock/Sadness"–"Everything"you"say"will"be"taken"to"heart;"excessive"research;"

worry"

•  Acceptance"–"They"will"listen"to"

everything,"they"will"WANT"to"know"more,"rational"discussion"

• Don’t"let"them"get"stuck"•  Recommendations"for"local"support"

groups;"virtual"support""

• What"can"I"do"to"help?""•  Make"a"phone"call"

•  Be"specific"

Target$Specific$Topics$

• Medicaid"Waivers"•  Hit"this"early!"Help"them"sign"up"for"ALL,"

give"them"info"to"look"over""

• SSI/Disability"•  Familiarize"yourself"with"the"basic"

eligibility"guidelines"

•  Help"families"fill"out"paperwork"or"direct"them"to"

someone"who"can"help"

• Community"Resources"•  Disability"Specific"Support"Groups"

•  Autism"Society,"DSACT,"CPATH"

•  Respite"Care"

• Online"Resources"•  Mommies"of"Miracles,"Facebook"Groups,"

Yahoo"Groups,"Listservs,"Parent"Blogs"

When"you"don’t"Know"•  It’s"okay"not"to"know,"it’s"not"

okay"to"leave"families"without"

answers"•  Research,"Give"family"research"tips,"

connect"them"with"someone"who"does"know"

•  Use"your"Community"Resources"•  Many"groups"know"of"other"places"you"

can"send"families,"call/email"and"ask!""

•  Contact"Texas"Parent5to5Parent"

•  Ask"Someone"else!""

•  Two"heads"are"better"than"one,"someone"else"has"likely"been"asked"this"before,"so"

put"your"heads"together"

Questions For You! 1.  Do"you"use"Facebook"or"other"Social"Media"Sites"professionally?""

2.  Do"you"think"Social"Media"Sites"are"viable"sources"of"information"and"

support"for"your"families?""

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Using"Social"Media"Professionally"

YES!"You"CAN"use"Social"Media!""

•  Create"a"separate"profile"for"professional"use"

•  Create"a"page"for"professional"use"

•  Create"a"Closed"Facebook"group"for"your"families"

Using"Hashtags"

•  Hashtags"group"information"by"using"a"common"phrase"

•  Follow"hashtags"on"Twitter,"Facebook,"and"other"sites"–"similar"to"RSS"Feed"

•  Use"hashtags"to"help"families"find"you"

How"does"Social"Media"Help"

• Real"life"examples"for"families"vs."“research”"and"textbook"cases"

•  Especially"helpful"for"rare"diseases"and"connecting"outside"your"area"

• Virtual"Support"can"be"just"as"important"

• Networking"

Social"Media"Examples" More"Search"Examples"

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Instagram"Hashtags" Twitter"Hashtags"

Blogs"

•  Encourage"families"to"search"for"family"blogs"

•  Start"a"blog"of"their"own!"

•  Therapeutic"•  Keeping"Friends"and"Family"Updated"

• Private"vs."Public"

Don’t"Be"Afraid"of"Social"Media!"

•  When"used"appropriately,"social"

media"is"an"excellent"

tool!"

•  Search"for"Family"

Groups"

•  Follow"Hashtags"

•  Follow"Community"

Resource"Pages"

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Follow-Up Questions 1.  Do"you"think"Social"Media"Sites"are"viable"sources"of"

information"for"families?""

2.  Will"you"start"incorporating"Social"Media"professionally?"

Our$Biggest$Help$•  U.R."Our"Hope"–"www.urourhope.org"

•  Helps"families"with"Undiagnosed"and"Rare"Medical"

Disorders"

•  Monthly"Meetings"

•  Assistance"with"research,"funding,"testing"

•  Texas"Parent"to"Parent"–"www.txp2p.org"

•  Statewide"Conference"Every"Summer"

•  Parent"Matching"

•  Parent"Volunteers"

•  Mommies"of"Miracles"–"Facebook"

•  Virtual"Support"(public"page"and"closed"groups)"

•  Connect"with"others"in"region"to"share"resources"

What$I$Wish$I$knew$•  Medicaid"Waivers"

•  Get"on"the"list"early!""

•  Local"Resources"and"Support"•  Texas"Parent5to5Parent,"ECI,"

U.R."Our"Hope,"Diagnosis"Specific"Groups"

•  Community"Services"

•  DADS/DARS,"Conferences,"Trainings"

•  Virtual"Support"•  Mommies"of"Miracles,"

Facebook"Groups"

Tips$&$Key$Takeaways$

• Meet"families"where"they"are"on"the"journey"

•  It’s"okay"not"to"know,"but"try"to"find"someone"who"does"

•  Key"points"to"hit"early:""•  Medicaid,"Waivers,"SSI/Disability,"Community"

Resources"

•  Leave"the"lines"of"communication"open"

•  Search"tip:"“Family"support"for____,”"blogs,"news,"use"social"media!""

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Websites$

• Our"Blog"–"www.braxtonjoseph.com"

• Parent"Companion"–"www.parentcompanion.org"

• Navigate"Life"Texas"–"www.navigatelifetexas.org""

• Parent5to5Parent"–"www.txp2p.org"

• U.R."Our"Hope"–"www.urourhope.org"

Questions?$