rubinstein5taybisyndrome tips$for$working$ with$families$07d0901f-86b6-4cd0...9/14/15& 3&...
TRANSCRIPT
9/14/15&
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What Service Coordinators Need to Know A"Mother’s"Perspective"
Meet$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"
9/14/15&
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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!""
9/14/15&
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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?$