Family Project Part C

SPED 421: Family Resource Plan 2019
For the Kaufusi Family
Created on: 3 June, 2019
Review Due (6 months): 3 December, 2019
Created by Alayna Nickel, Sophie Williams, Michelle Lee

and Isabel Hills
FAMILY INTRODUCTION
The Kaufusi family consists of Afi, Sefina, and three young children, two of which have been
diagnosed with Osteogenesis Imperfecta--an inherited disease that can be characterized with
having extreme fragility of the bones. The family is of a Samoen origin and practices the
Buddhist religion.
FAMILY STRENGTHS
The Kaufusi family is very religious. They believe that it is important to be one with yourself and
that everything happens for a reason. This aspect of their religion helps Sefina to have greater
perspective during their time of hardship. Sefina is strong in that she cares deeply about her
children and is willing to sacrifice much so that they can have their needs taken care of.
INFORMATION SUPPORT
1st Family Concern/Priority: Sefina is worried about the fetal growth process of children with
Osteogenesis Imperfecta (OI), especially with being pregnant with her twins. She wants to know
more information so she can be more prepared if complications occur during her pregnancy.
Current Resource/Information: The Kaufusis are already aware of the development of typically
developing children. Sefina knows that OI can cause many breaks during the child’s lifetime
which can lead to deformity in the fetal' bone development.
Outcome: The hopeful outcome for this informational support is that is will allow Sefina to have
all the specialists she needs to answer her questions and care for her and her baby while
pregnant.
● Suggested Action: In order for Sefina to access this resource, she needs to follow the
steps listed.
○ Step 1:Sefina must have her current pregnancy care provider refer her to the
program
○ Step 2: After she is referred, she needs to schedule an appointment by calling the
number below in contact information
○ Step 3: She should also make sure that the visits will be covered by her insurance.
A list of plans is found on their website.
○ Step 4: Have her provider fax the clinic records about her pregnancy before her
scheduled appointment
● Resource Type and Name: Seattle Children’s Prenatal Diagnosis and Treatment Program
(State)
● Contact Information:
○ Telephone: 206-987-5629
○ Fax number: 206-987-2962
○ Website: https://www.seattlechildrens.org/clinics/prenatal-diagnosis-and-
treatment/
○ Address: 4540 Sand Point Way NE
Building 1, Suite 320
Seattle, WA 98105
● Program Information: The Seattle Children’s Prenatal Diagnosis and Treatment Program
provides a great number of specialists and services that will be provided upon diagnosis.
Treatment care provided by doctors and specialists care will take place throughout the
pregnancy, and even after the birth as the medical needs change.
● Policy Information: The final cost will depend on treatment and insurance coverage. With
Apple Health (medicaid) there will be no cost. For the most accurate cost estimate call
206-987-3333 or email financialcounseling@seattlechildrens.org. The clinic is open from
Monday through Friday, 8 a.m. to 5 p.m.
● Applications/Forms: If applicable, fill out any forms or applications for consideration to
this program or to access services
● Pamphlets/Handouts: (see enclosed brochure for details)
Rationale: This is a great resource for the family, because there are a great number of specialists
and services that will be provided upon diagnosis. Treatment care provided by doctors and
specialists will take place throughout the pregnancy, and even after the birth as the medical needs
change
2nd Family Concern/Priority: The Kaufusi family has some concerns regarding the
developmental milestones of each of her children-both with and without OI. She wants to ensure
that her child without OI is meeting the standard skills as other children in the same age and
stage of development. For her children with OI, Sefina wants to know if developmental delays
are possible after birth and how to better support that development.
Current Resource/Information: The Kaufusis are already aware of the development of typically
developing children. Sefina knows that OI can cause many breaks during the child’s lifetime
which can lead to deformity in the fetal' bone development.
Outcome: To provide information about the different developmental milestones for each child
with OI, which will be different for each situation. It also will tell her of additional sources to
turn to for additional information regarding the development of children with OI after birth.
● Suggested Action: In order for Sefina to access this resource, she needs to follow the step
below.
○ Visit the website below
(http://www.oif.org/site/PageNavigator/oif_mc_pediatric_care.html), or look up
Osteogenesis Imperfecta Foundation Pediatric Care
● Resource Type and Name: Osteogenesis Imperfecta Foundation “Pediatric Care” website
(Federal)
○ Address: Osteogenesis Imperfecta Foundation
804 W. Diamond Avenue, Suite 210
Gaithersburg, MD 20878
○ Telephone: 800-981-BONE (free of charge) or 301-947-0083
○ Fax: 301-947-0456
○ Email: bonelink@oif.org
○ Website: http://www.oif.org/site/PageNavigator/oif_mc_pediatric_care.html
● Program Information: This resource is a well written document by several trained
professionals that will tell Sefina that each child’s situation with OI is different, as well as
which sources to turn to for more individualized information about overall development
after birth.
● Policy Information: This is a free website accessible at all hours.
● Application/Forms: There is no application or form to fill out.
Rationale: This is a great resource, because it gives information about the general elements of a
care plan for a child with OI. It also gives specific information about interdisciplinary care,
general pediatric care, monitoring, diet and nutrition, and concerns that may arise with regard to
mental health, development and growth of children with OI.
INFORMAL SUPPORT
1st family concern: Sefina has a concern that the typically developing twin may need additional
emotional and social support that the mother may not be able to give due to the siblings who
have a disability. Therefore, Sefina wants a resource that will help to provide her child with the
attention that (s)he will need.
Current Resource/Information: Sefina is unaware of resources that will provide her children
with the extra emotional and social support they will need. She wants to know of resources that
will provide her children with social and emotional support as they grow-up with siblings who
have disabilities.
Outcome: The outcome of this resource is to allow Sefina’s future children a safe environment
where they can freely express the challenges they face in having a sibling with a disability. As
they express their feelings, they will allow her children to make connections with other children
who are going through similar situations. Each workshop will also help the child learn new
coping strategies of dealing with a sibling with a disability.
● Suggested Action: In order for Sefina to access this resource, she needs to follow the
steps listed.
○ Step 1: Visit the website (https://www.seattlechildrens.org/health-safety/keeping-
kids-healthy/development/sibling-special-needs-sibshops/) and click the “register
for classes” button on the bottom of the page with the above given link
○ Step 2: Call the phone number (206-987-4133) to officially register
● Resource Type and Name: Seattle Children’s Hospital (State)
○ Address: 4800 Sand Point Way NE Seattle,
Washington 98105; United States
○ Website: (https://www.seattlechildrens.org/health-safety/keeping-kids-
healthy/development/sibling-special-needs-sibshops/)
○ Phone number: 206-987-4133
● Program Information: a community resource that helps acknowledge children who have
siblings with disabilities by providing a mixture of activities, games, and special guests.
● Policy Information:
○ $25 per session
○ Open 24 hours a day
● Application/Forms: There is no application or form to fill out.
Rationale: This resource will be useful for Sefina’s family because this will teach her children
valuable skills to cope with the struggle of having a sibling with a disability. She will also need
this resource because it will help her children have a strong support group of friends that they
can turn to when things get tough. This will therefore be vital for the overall emotional health of
their family unit as the children get older.
2nd family concern: Sefina is worried about handling the roles of both mother and father on her
own because she knows how stressful it will be. Therefore, she wants to know what support is
out there for mothers in her situation that can relieve some of her stress.
Current Resource: Sefina is aware that there are various support groups out there. However,
she is unaware of therapy groups that are at a reasonably low cost. Thus, Sefina wants to know
of reasonably priced therapy groups that will help give her the emotional and social support that
she will need.
Outcome: The outcome of this resource is to provide Sefina with a safe environment to express
the current challenges she is going through. It will help Sefina connect with and be given support
from other mothers like her who are going through similar struggles. Through this source, she
will learn vital strategies for coping skills and parenting.
● Suggested Action: In order for Sefina to access this source, she needs to follow the steps
below.
○ Step 1: Follow this link
(https://www.psychologytoday.com/us/groups/parenting/wa/seattle/63374?
sid=5cf289da3ed2d&ref=5&tr=ResultsName)
○ Step 2: click on the button entitled “email me” and fill out the information listed
○ Step 3: check your email frequently to receive information on the times of
sessions, discussion of the final cost, and discussion on insurance
● Resource Type and Name: Support for Parents of Children with Special Needs- group
therapy (Community)
Contact Information:
○ Address: Shelterwood Collective 108 S Jackson St Seattle, Washington 98104
○ Website:
https://www.psychologytoday.com/us/groups/parenting/wa/seattle/63374?
sid=5cf289da3ed2d&ref=5&tr=ResultsName
○ Phone number: (206) 745-7424
Program Information: A community therapy group meant to give support to one another
based on the overall goals and sizes of the group. The aim of this therapy is to focused on
the issues of coping skills, parenting, and relationship issues.
○ Session Cost: $20-$40
○ Operating hours found by contacting psychologist through given phone number
listed in contact information
Rationale: This resource will be useful for Sefina because it will provide her the opportunity to
have someone she can turn to who understands her current situation. This therapy session will
also give her the tools she can use in her daily life to help relieve stress
FORMAL SUPPORT
1st Family Concern/Priority: Sefina is concerned about the fine motor development of her
children. Because of her oldest child’s diagnosis of Type IV OI, she worries about her child’s
need for support to learn how to complete tasks of daily living.
Current Resource/Information: Sefina knows some information about the fine motor
development from growing up with her sibling with Type 1 OI, and that some activities are
limited due to the disorder.
Outcome: Therapists have an important role in helping children who have OI because they will
be able to move their muscles better than they would be able to before. This will help the
Kaufusi family - Sefina and all the children- be able to more activities as a family, even if it is
something the children are doing in Physical & Occupational Therapy.
below.
○ Step 1: Visit or contact the office using the information given below. Set up an
appointment with a therapist.
● Resource Type and Name: Physical & Occupational Therapy: Pediatric Physical &
Occupational Therapy Services (Private, Community)
○ Address: 20310 19th Ave NE Shoreline, WA 98155
○ Phone: (206) 367- 5853
● Program information: This is based on donations from people all over the U.S. This
foundation is meant to provide physical support to the families that have child(ren) who
have OI, both financially for the mother and physically for the child.
○ The clinic’s hours are 8am-6pm Monday through Friday
○ The Profectum Parent Toolbox is a free resource for parents
○ Initial Evaluation and Treatment when provided in- clinic as part of OT
■ Individual 1:1 Occupational Therapy one hour each $175
■ Three subsequent initial sessions $150 per hour
● Applications/Forms: There is no application or form to fill out.
Rationale: Taking the child(ren) with OI to Physical & Occupational Therapy will help them be
able to move their muscles, while carefully treating the fragility of their bones. This will also
allow Sefina to go to work without added stress.
2nd Family Concern/Priority: Sefina has some concerns about her child’s ability to communicate
due to his hearing loss. She wants to know if there is resource she can turn to in order to help
increase her child’s ability to communicate.
Current Resource/Information: Sefina knows something about Osteogenesis Imperfecta because
her sister has type I Osteogenesis Imperfecta.
Outcome: By taking the child(ren) who have OI to Therapy, the child will learn how to
communicate with all members of the family. In this therapy the children will learn effective
techniques to use, so all members of the family can understand what the child is saying.
below:
○ Step 1: Visit http://www.oif.org/site/PageServer?pagename=HearLoss for access
to information regarding OI.
● Resource Type and Name: “Osteogenesis Imperfecta Foundation” (Community)
○ Address: 4800 Sand Point Way NE, Seattle WA, 98105
○ Phone: 206-987-2104
● Program information: This is based on donations from people all over so the foundation
is able to support the families that have child(ren) who have OI.
○ Seattle Children’s Hospital, open 24 hours, 7 days a week.
○ Policy: a signed concept form from a patient’s legal guardian is required before
any information can be released. The amount depends on your plan of benefits
like copay, coinsurance, individual and family deductible amount, as well as the
type of service the child is receiving.
● Applications/Forms: There is no application or form to fill out.
Rationale: As her child grows older, his/her hearing abilities might worsen.This resource will
help Sefina feel a greater amount of support and comfort in knowing how to help her child’s
ability to communicate.
MATERIAL SUPPORT
1st Family Concern/Priority: Sefina is concerned about the extent of her home’s wheelchair
accessibility. She is worried about her financial ability to provide for such expensive
accommodations. She wants the accessibility to provide independence in the family’s
interactions, and wants to know where she can get funding to help.
Current Resource/Information: Sefina knows in general that accommodations can be made on
her home to better suit the needs of her children with disabilities.
Outcome: Using the resource of “Rebuilding Together Seattle”, will provide repairs,
accommodations and greater accessibility in the Kaufusi home. In receiving these
accommodations the Kaufusi family--Sefina as well as the children both with and without
Osteogenesis Imperfecta-- will have greater opportunity for independence in the home.
below.
○ Visit http://www.rtseattle.org/ and “Apply for Help”
○ Follow the criteria and steps listed on the website
● Resource Type and Name: Rebuilding Together Seattle (Private)
○ Address: Aurora Ave. N
Suite 305
Seattle, WA 98109
○ Email: info@rtseattle.org
○ Phone: (206) 682-1231
● Program information: This is a state resource that is funded by the State of Washington
that provides home modifications for low income families with family members that have
a disability. The applicants must be State residents.
● Policy Information: The office is open Monday through Friday, 8 am to 5 pm.

● Applications/Forms: Visit http://www.rtseattle.org and an application will be available to
download and fill out.
Rationale: This resource provides Sefina and her family with the opportunity for a better and
more easily accessible home for their family to interact. Both funding and volunteers are
provided. The process involves no more than an application and explanation of the
accommodations wanted from the part of the applicant.
2nd Family Concern/Priority: The Kaufusi family has some concerns about covering medical
expenses. Sefina knows that extensive hospital visits and surgeries will cost money that she
might not have, and wonders where she can turn to for assistance.
Current Resource/Information: The Kaufusis know that there is financial help available for
families with low-income and many medical bills to pay.
Outcome: Medicaid is a resource that provides free or low-cost benefits for families that have
children with disabilities. Receiving Medicaid and/or CHIP for the Kaufusi family, will provide
the Kaufusi family with the financial help needed to support the children in the family that have
been diagnosed with Osteogenesis Imperfecta.
below.
○ Step 1: Visit healthcare.gov to see if you are eligible for Medicaid/CHIP
○ Step 2: Gather all necessary documents needed for the application. The
documents required can be found on https://www.ehealthmedicare.com/medicare-
administration-articles/applying-medicaid/
● Resource Type and Name: Medicaid and Children’s Health Insurance Program (CHIP)
(Federal)
○ Email: SEARODMCH@cms.hhs.gov
○ Phone: 206-615-2326
○ Address: 701 Fifth Avenue, Suite 1600
Seattle, WA 98104
● Program information: Medicaid and CHIP is a resource that provides free or low-cost
benefits for families that have children with disabilities
● Policy Information: The office is open from Monday through Friday, 8 a.m. to 5 p.m.
● Applications/Forms: Application is available online at this website

https://www.dshs.wa.gov/altsa/home-and-community-services/how-apply-medicaid
Rationale: Because of all the help that the Kaufusi family is needing, applying for Medicaid
and/or CHIP will give them peace of mind in knowing that it will be easier for the bills to be
paid. CHIP is health insurance that is provided specifically to help the children that have
disabilities! They will be in good hands and will be able to receive the help that they need.
Please check one and sign below:

I agree to the above stated plan
I agree to the above stated plan with the following changes (see attached addendum sheet)
I do not agree to the above stated plan and refuse all services and supports
_______________________________ ______________________________
Parent/Legal Guardian print name Parent/Legal Guardian print name
_____________________________________________________________________________
Parent/Legal Guardian signature Date Parent/Legal Guardian
signature Date
____________________________________________________
Service Coordinator Signature Date

Family Project Part C

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Family Project Part C

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SPED 421: Family Resource Plan 2019

For the Kaufusi Family

Created on: 3 June, 2019

Review Due (6 months): 3 December, 2019

Created by Alayna Nickel, Sophie Williams, Michelle Lee

● Resource Type and Name: Rebuilding Together Seattle (Private)

● Policy Information: The office is open Monday through Friday, 8 am to 5 pm.

● Applications/Forms: Application is available online at this website

● Pamphlets/Handouts: (see enclosed brochure for details)

Please check one and sign below:

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