ECSE421:FamilyResourcePlan

FortheSalipoFamily

Createdon:February3,2016

ReviewDue(6months):August3,2016

Createdby:RaeMiller,CortneyHouston,andSandraDickey

FAMILYINTRODUCTION
The Salipos are a young family living in Salt Lake City, Utah who practice Buddhism.
Their ethnic background is Samoan. Natalia and Jared Salipo just had their first baby who has
officially been diagnosed with Type 1 Osteogenesis imperfecta. Natalia has an older sister that
also has this genetic disorder, so they decided to have testing done in uteroeventhoughJareds
side of the family has no history of OI. Natalia knew that she could carry the gene and that at
least10to15percentofOIcasesaretheresultofarecessivemutation.

The Salipo family was living in a town housepriortothebirthofAnisekoSalipo, who

goes by Seko for short. But, they decided that it would be beneficial to move into a more
expensive single story home to accommodate for Sekos physical limitations. Seko has been
diagnosed with moderate to severe hearing loss and has suffered a severe break in his leg. The
SalipofamilywouldliketostartworkingonwaystoaccomodateSekoshearingloss.
Two years after Seko was born, twins were born into the Salipo familya boy, Tamati
and a girl, Penina. In utero, it was discovered that Tamati would also be born with Type 1
osteogenesisimperfecta.

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Natalia and Jared have both turn to their family and religion to comfort them and give
them strength. They both want their two sonstoliveanormal,happylife,haveapositiveschool
experience, and be able to interact with others normally. They hope to find professionals near
wheretheyliveinSaltLakeCitythatwillaidtheminsupportingtheirfamilysneeds.
FAMILYSTRENGTHS
The Salipo family had knowledge of Type 1 Osteogensis Imperfecta before Seko was
diagnosed, and were able to be proactive.Theytookactiontogettestingdonewhile Nataliawas
still pregnant, and were able to make preparations for their son even before he was born. They
even moved into alargerhomeinSaltLakeCitytohelpaccommodatetheirsonsneeds.Despite
the challenges of having two children with brittle bone disease, the Salipo family has been able
todependontheirextendedfamily,eachother,andtheirreligionforcomfortandsupport.
INFORMATIONALSUPPORT
1st
Family Concern/Priority: Natalia and Jared would like to know more about how to
accommodate Sekos hearing loss. They also want to know how they can prevent Seko and
Tamati from having any more severe breaks, and while still allowing them to have a certain
amountofindependence.
Current Resource/Information:
Natalia grew up with her sister Epa Fiatoa who also has Type 1
Osteogensis Imperfectaandhasseenhowitaffectedherlife.JaredhasonlyseenpartlywhatEpa
hadtogothroughandwhatOIentails.

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Outcome: Natalia and Jared will have the information they need to betterunderstandwhatSeko
will go through, what may come with the disease and will be better informed for all of the
decisionstheyhavetomakeinthefuture.
Suggested Action:
The OI foundation of the state of Georgia can help the Salipo family find
others whohaveOsteogenesisImperfectaorwhohavelovedoneswhohaveOI. Thisfoundation
can also help the family find a support group to help them deal with the lifestyleandemotional
distressthattheyhaveexperiencedasafamily.
Resource Type and Name: Osteogenesis Imperfecta Foundation,anonprofitorganizationunder
thestateofGeorgia.
ContactInformation:
o

Telephone:(301)9470083

TollFree:(844)8897579

Fax:(301)9470456

804W.DiamondAve,Suite210Gaithersburg,MD20878

Program information: The mission ofOsteogenesis ImperfectaFoundation(OIF)or(OI)

is to improve the quality of life regarding those whohaveOIthroughresearchingacure,
creating mutual support, giving education on OI and raising awareness about OI, also
knownasthebrittlebonesyndrome)

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Policy Information: Hours of operation are

MondayFriday, 9am5pm Eastern time
.
OIF.org may collect personal information such asemailaddress,name,address,interests
andformatpreferenceswhenmakinganonlinepurchaseordonation.
Applications/Forms:
Pamphlets/Handouts:
Rationale:
This resource will helptheSalipofamilytofindsupportgroupswhounderstandwhat
they are going through. In addition, thisresourcewillhelpthemwithfundingforextrahelpwith
medicaltreatmentsandotheradditionalsupports.

2nd
Family Concern/Priority:
Natalia and Jared would like more information on how to
overcome family challenges and helping others to know and understand their sons disorder.
They would like some help on how to educate others such as teachers, babysitters and other
caregivers. They would also like more information on how to help their children get the needs
and services provide through the school that will allow their children to get the services their
childrenneedtocontinuetheireducation.
Current Resource/Information:
Their current resource of information is coming from Becky,an
inhome nurse who has multiple experiences with this situation, for her daughter has the same
thing, she has been a great emotional support for the Salipo family, relaying all of her
experiencesandchallengesthatshetoohasgonethrough.

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Outcome:TheSalipofamilywouldliketoknowhowtoexplaintheirboysconditiontoteachers
and other caregivers, and see if they can help their child get the services they need for
educationalpurposes.

Suggested Action:
Adrianna will make a referral call to an agency to find and Early
Interventionist who can help Jared and Natalia get the services Seko and Tamati needtogetthe
besteducationalqualitytheycanreceive.

Resource Type and Name:

National Information Center for Children and Youth with
Disabilities
ContactInformation:
o Phone:Toll:(800)6950285(Voice/TTY)
(202)8848200(Voice/TTY)
o P.O.Box1492
Washington,DC20013
Program information: a national information and referral center. NICHCY provides
information on disabilities and disabilityrelated issues for families, educators, andother
professionals. At the NICHCY website you can access a list of state agencies, national
agencies, toll free numbers, or read definitions and explanations on various disabilities.
You can also contact NICHCY by email or a toll free phone number and have your
questionsanswered
Policy Information: Use of this website is voluntary. By using this website, you consent
to the collection and use of your personally identifiable information (PII) and
nonpersonal information as described in this Online Privacy Statement. This Online
Privacy Statement only governs the use and disclosure of information collected through
thiswebsite.
Applications/Forms
Pamphlets/Handouts
Rationale:
INFORMALSUPPORT
1st
Family Concern/Priority:
The Salipo family would like more information about the OI
community,andsupportgroups.

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Current Resource/Information: Their current resource of information is that Natalia has a sister
who also has OI. The information that they have received was from all of the testing and paper
work that Epia as had. Natalia has a basic background from trial and error of having family
supportandovercomingthechallengesthatthefamilyhasaquiredalongtheway.

Outcome:
They now have plenty of support with people who can help them overcome family
challenges,fortheyunderstandwhattheyaregoingthrough.

SuggestedAction:
Resource Type and Name: Osteoporosis and Related Bone Diseases National Resource
Center
ContactInformation:
o 2AMSCircleBethesda,MD208923676
o Phone:2022230344
o Tollfree:800624BONE(2663)
o TTY:2024664315
o Fax:2022932356
Program information:
National Resource Center provides patients, health professionals,
and the public with an important link to resources and information on metabolic bone
diseases. The mission of NIH ORBD~NRC is to expand awareness and enhance
knowledge and understanding of the prevention, early detection, and treatment of these
diseasesaswellasstrategiesforcopingwiththem
PolicyInformation:
MondaythroughFriday,8:30a.m.to5:00 p.m.,EasternTime.Wedo
not collect anypersonallyidentifiableinformation(PII)aboutyouduringyourvisittothe
Osteoporosis and Related Bone Diseases. We do, however, collect somedataaboutyour
visit to our website to help us better understand how the public uses the site and how to
makeitmorehelpful
Applications/Forms
Pamphlets/Handouts

Rationale:
The reason that I am including Osteoporosis and Related Bone Diseases National
Resource Center that if you want more resources and you dont know where to look, this is the
placetogoto.

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2nd
Family Concern/Priority:
Natalia and Jared would like more information regarding social
and emotional issues. They would like to try and create as much as a normal environment for
Seko and Tamati as they can. Their wish is for both of their sons, who have osteogenesis
imperfecta,tofitinwiththeirfriendsandnotfeelliketheyareanydifferentthentheirpeers.

Current Resource/Information:
Their current resource is a support group that they have been
seeing on a weekly basis, which helps the Salipo family to feel like there are others who
understand them and have a similar type of family background so they do not feel like they are
aloneinthissituation.

Outcome:
Natalia and Jared will now have the desired knowledge to help support Seko and
Tamatiregardingthesocialandemotionalissuesthatmaycomealongtheway.

SuggestedAction:
RachaelwillcallandmakeareferraltopsychosocialworkersGlendaand
DavewhowillmakeahousevisitandhelpteachNataliaandJaredtoallowotherstounderstand
andknowwhattheirboysaregoingthroughandhelpthemtocalmlyexplaintootherstheycome
incontactwithtohelpthemunderstandtheirsonsdisorder.

ResourceTypeandName:CanadianOsteogenesisImperfectaSociety
ContactInformation:
o phone:9052945340
o address:208RamonaBlvd
MarkhamOntario,L3P2K8Canada
o email:rkhayes@ccat.on.ca
Programinformation:Thisisanonprofitableinternationalresourcethataimstoprovide
emotionalsupportonapersonallevelforparentsandpeoplewithosteogenesis
imperfecta
PolicyInformation:Hoursofoperationare
MondayFriday,9am5pmEasterntime
.
OIF.orgmaycollectpersonalinformationsuchasemailaddress,name,address,interests
andformatpreferenceswhenmakinganonlinepurchaseordonation.
Applications/Forms
Pamphlets/Handouts

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Rationale:
BecauseofNataliaandJaredgainingsomuchinformationfromfoundationsand
websites,itwouldbeeasierforthemtounderstandmeetingsomeoneinpersonexplainingthe
typesofemotionalsupportsinsteadofjustreadingthem.

FORMALSUPPORT

1st
FamilyConcern/Priority:
TheSalipofamilysfirstpriorityistofindanoccupational
therapistthatwillhelpthefamilylearnandpracticetechniquestorelievetheboyspain,andto
helpthemstrengthentheirmusclesandboneswithoutcausingfurtherinjury.

CurrentResource/Information:
Thefamilyunderstandsthattheyneedtotakecarewithhowthey
handletheboys,andthattheboysshouldnotengageinactivitiesorsportswithalotofphysical
contact.

Outcome:
ThehopedoutcomeisthatDr.Cardellcanhelptheboysstrengthentheirmusclesand
boneswithoutsustaininginjuries,andworktohealfrompast(andpossiblypresent)injuries.

SuggestedAction:
ResourceTypeandName:
ElizabethM.Cardell,Ph.D.,OTR/L(occupationaltherapist)
ContactInformation:
Phonenumber:(801)5853837
Contactemail:
robyn.m.thompson@utah.edu
Website:
http://www.health.utah.edu/occupationaltherapy/index.php
Address:LifeSkillsClinic
540ArapeenDrive,Suite200
SaltLakeCity,UT84108
Programinformation
UniversityofUtahHealthCare
50N.MedicalDriveSLC,UT84132
(801)5812121

PolicyInformation:
18665236842or
http://dnvglhealthcare.com/
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Applications/Forms:
http://healthcare.utah.edu/lifeskillsclinic/whatisoccupationaltherapy.p
hp
Pamphlets/Handouts
http://healthcare.utah.edu/lifeskillsclinic/services/

Rationale:
Seko and Tamatis bodies have undergone a lot of stress and injury throughout their
young lives. They need help to learn how to work with their bodies to prevent and cope with
injuries. They also need assistance to strengthen their muscles andbonesifpossible.Thefamily
hopes that seeking an occupational therapist through the University of Utah will mean thatthey
will be getting stateoftheart services with a coaching approach since universities are
continuallyseekingafterthelatestandbestpractices.

2nd

FamilyConcern/Priority:
TheSalipofamilywouldlikemoreinformationabouthowspeech
therapycouldbenefitSekoandTamati.

Current Resource/Information:
Natalia and Jared know that they should use appropriate
childdirected speech with their young children, and that they should support language
development through exposing the boys to a lot of language. They also support they boys
languagedevelopmentbyreadingtothemoften.

Outcome:
Thefamilyhopestocorrectanyspeechproblemsthathavebeencausedbytheboys
hearingloss.

SuggestedAction:
ResourceTypeandName:
MariaGurrister,M.S.CCCSLP,fromtheWasatchSpeechandLanguage
Center
ContactInformation:
Address:
2120East3900South,Suite200
Holladay,UT84124
Email:info@WasatchSpeech.com
Phonenumber:(801)3080400
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Fax:(801)3080401

Programinformation:
Phonenumber:(801)3080400

PolicyInformation:
Phonenumber:(801)3080400

Applications/Forms:
http://www.wasatchspeech.com/contactus.html
Pamphlets/Handouts:
http://www.wasatchspeech.com/languagetreatment.html

Rationale:
Getting support from a speech pathologist will help Seko and Tamati overcome
speechrelated problems that are a result of the hearing loss they have experienced, which will
benefitthemtobeatthesamelevelastheirpeerssociallyandinschool.

MATERIALSUPPORT
1st
Family Concern/Priority:
The 1st priority for the family is to acquire hearing aids for Seko
and for either one or both ears. The Salipo family wants to make life as normal as possible for
the children. They are concerned about how hearing loss will affect Seko and Tamatis speech
and ability to communicate, and interact normally. They want their boys to beabletobeableto
have as normal of anexperiencemakingfriendsandbeingatschoolaspossible.Theparentsfeel
that it is important to help the boys feel normal as they get older. They dont wanttheirboysto
feel selfconscious of having hearing aids since the boys will be less likely to keep them in if
they feel embarrassed. Their boys have already had to miss out on a lot of sports and other
physical activities. They dont want them tomissoutonanythingelse,andhopethathelpingthe
boyshearbetterwillhelpfacilitatethisdesire.

Current Resource/Information:
The familys current source of information about hearingaidsis
fromafewfriendsandfamilymembers.

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Outcome:
The outcome of gaining this material support is to obtain comfortable, cosmetically
pleasing hearing aids so that the boys speech will beimpactedlessbytheirhearingloss,sothat
theyhearandunderstandwhatpeoplearesayingtothembetter,andsotheywillkeepthemin.

SuggestedAction:
ResourceTypeandName:
HearingPlanet,websiteandlinktolocalclinics
ContactInformation:
Phonenumbertoscheduleahearingevaluation:18555685128
Submitanemail,orlivechatthrough
http://www.hearingplanet.com/hearingclinics

Programinformation:
Phonenumber:18555685128
PolicyInformation
Phonenumberforpoliciesandprocedures:18004327669.
Applications/Forms:
http://www.hearingplanet.com/hearingclinics/scheduleappointment
Pamphlets/Handouts:
http://www.hearingplanet.com/buyersguide

Rationale:
The reason for having Hearing Planet as a resource is for assistancelocatinghearing
clinics nearby, and to research hearing aids before going to a hearing evaluation. The Salipo
family are doing what they can to cope with the effects of brittle bones through prevention of
injury and therapy. They feel that out of all the material supports that they can provide their
children, hearing aids should be the first priority so that they can be able to learn and
communicatebetter,andbemoresociallyavailable.

2nd
Family Concern/Priority: The Salipo family would like to get something to help ease the
boysdiscomfortandpainintheirbonesandjoints,especiallyatschool.

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Current Resource/Information:
Currently, the Salipo family cushions hard chairs at home with
pillows and blankets, and communicate with school teachers about allowing the boys brief
breakstostretchandreadjusttohelpdealwithdiscomfort.

Outcome:
TheintendedoutcomeistoeaseboneandjointdiscomfortsothatSekoandTamati
canfocusontheirschoolwork.

SuggestedAction:
ResourceTypeandName:
Softtouchseatlinersfromadaptivemall.com.
ContactInformation:
Phonenumber:(800)3712778
Availability:(8:30AM5:00PMMFEasternStandardTime)
Fax:3154298862
Programinformation:
Email:
info@adaptivemall.com
Phonenumber:(800)3712778
PolicyInformation:
Email:
info@adaptivemall.com
Phonenumber:(800)3712778
Applications/Forms:
http://www.adaptivemall.com/blankorderform.html
Pamphlets/Handouts
http://www.adaptivemall.com/scor.html

Rationale:
Obtainingportable,softseatingforSekoandTamatiwillhelptheboysbeableto
focusanddobetterinschoolbecauseitwillhelppreventjointandbonediscomfort.

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Pleasecheckoneandsignbelow:
Iagreetotheabovestatedplan

Iagreetotheabovestatedplanwiththefollowingchanges(seeattachedaddendum
sheet)

Idonotagreetotheabovestatedplanandrefuseallservicesandsupports

Parent/LegalGuardianprintname
Parent/LegalGuardianprintname

Parent/LegalGuardiansignature

Date

Parent/LegalGuardiansignature

ServiceCoordinatorSignature

FAMILYRESOURCEPLANADDENDUMPAGE
DATE:2/22/2016

AREAOFSUPPORT:
FamilyConcern/Priority:
CurrentResource/Information:
Outcome:
SuggestedAction:
ResourceTypeandName
ContactInformation
Programinformation
PolicyInformation
Applications/Forms
Pamphlets/Handouts
Rationale:
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Date

Date

ECSE421:FamilyResourcePlan

AREAOFSUPPORT:
FamilyConcern/Priority:
CurrentResource/Information:
Outcome:
SuggestedAction:
ResourceTypeandName
ContactInformation
Programinformation
PolicyInformation
Applications/Forms
Pamphlets/Handouts
Rationale:

Pleasecheckoneandsignbelow:
Iagreetotheaddendumchanges

Idonotagreetotheaddendumchanges

Parent/LegalGuardianprintname

Parent/LegalGuardiansignature

Parent/LegalGuardianprintname

Date

Parent/LegalGuardiansignature

Date

ServiceCoordinatorSignature

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Date