Whitney Wahlen

Nicolette Call
Amy Brewer

ECSE 421 Family Project

Lee Ayumi, a thirty-two year old from Denver, Colorado, is a chiropractor. His wife, Kim, just

finished beauty school and is now working at a nail salon trying to become a nail technician. Both enjoy

playing tennis, walking their dog through Memorial Park, reading books, and photography. Lee is a laid

back man, who likes to go with the flow and is very even tempered. He has traditional Asian roots and

believes doctors should handle everything on their own. Kim is a go-getter, likes to be informed, and is a

huge worry wart. Even though she is extremely independent, Lee always makes the final decisions in their

relationship. Due to their traditional background, they believe family issues should only stay within the

family.

Lee and Kim just found out they are pregnant with their first child. This baby will be the first

grandchild on both sides of the family so it is very anticipated. The family has no worries because there is

no history of genetic disorders or birth defects. Both sets of parents were invited to the twenty-week

ultrasound to find out the sex of the baby, but things went downhill after there was a long period of

silence between them and the doctor. The doctor breaks the news that the baby has multiple medical

concerns including a cleft lip and something wrong with her heart. The doctor referred the family to many

genetic counselors and got them set up for a new appointment. Two weeks later, the tests they had taken

had confirmed that their daughter had down syndrome and the doctor recommended an abortion of the

pregnancy. They told her if they did decide to continue with the pregnancy that the baby would have to

have heart surgery days after her birth to correct the defects. The Ayumi family did not agree with this

and did not go through with the abortion.

Their baby was born at thirty-eight weeks, weighed six pounds four ounces, and was eighteen

inches long. Because of the facial deformity Kimberlee had, her father Lee had a hard time bonding with

her, while Kim loved everything about her. The room was full of mixed emotions.
 Part B

Information:

1st Family Concern/Priority: Lee and Kim would like more information about down syndrome and what

the future is like with having a child with down syndrome - how long she will live, what she will be able

to achieve, the different types of problems they will have with Kimberlee, if anything can be cured, etc.

Current Resource/Information: The doctors have told Lee and Kim the basics of down syndrome, so they

know what it is and the diagnosis but not the details.

Outcome: Lee and Kim will have the knowledge desired about down syndrome.

Suggested Action:

Lee and Kim will make a First Call Parent Visitation and learn more about what they want to know

and the classes and events they can attend as well.

Resource Type and Name This is a state resource/Rocky Mountain Down Syndrome Association

Contact Information 7200 E. Hampden Ave Suite 301 Denver, CO 80224

info@rmdsa.org 303-797-1699

Program information The mission of RMDSA is to assure inclusion and enhance independence of

people with down syndrome by providing education, resources and support in partnership with

individuals, families, professionals, and the community.

Policy Information Different events and classes that the parents can attend, A First Call Parent

Visitation for parents with newborn down syndrome babies through the phone

Applications/Forms There are no applications or forms.

Pamphlets/Handouts

Rationale: This association has a program that specifically helps parents who have down syndrome

children that are newborns. This will give them satisfaction with having the knowledge they need to raise

their daughter and emotional support as well.

2nd Family Concern/Priority: Lee and Kim would also like to know more about Kimberlees heart

problems.

Current Resource/Information: The doctors have told Lee and Kim the basics of her heart problems and

how they are planning to cure it.

Outcome: Lee and Kim will have the knowledge desired about heart problems.

Suggested Action: Lee and Kim will join the American Health Association to learn more about different

heart conditions and information with each, as well as receive advice and support.

Resource Type and Name This is a national resource/American Heart Association

Contact Information 1777 S. Harrison St, Suite 500 Denver, CO 80210 (303) 801-4630

Website:

http://www.heart.org/HEARTORG/Affiliate/Denver/Colorado/Home_UCM_SWA030_AffiliateP

age.jsp#

Program information Building healthier lives, free of cardiovascular diseases and stroke. That

single purpose is all we do. The need for our work is beyond question

Policy Information Any information/knowledge desired can be found on the website. There are

multiple sessions/events where anyone is welcome to attend.

Applications/Forms - (join online)

Rationale: This provides a place where the Ayumi family can fully research any questions they have

regarding Kimberlees heart problems. There are multiple professionals/members/volunteers involved that

can advise and support them.

Informal:

1st Family Concern/Priority: The Lee and Kim family recently relocated for Lee's employment which

required them to move away from family and friends. The Lee family would like to identify a support

group for the whole family while they are in a new environment and need emotional support.
Current Resource/Information: They know support groups have helped some of their friends get through

trying times and have heard about the Down Syndrome National Association having resources they can

use, even from Fort Collins.

Outcome: The family will be able to come to terms with Kimberlees condition and know they are not

alone in their situation, as well as strengthen their family relationships.

Suggested Action: An hour away sits the Wyoming Down Syndrome Association. This is a support

system for families who have a child with Down Syndrome. In addition to having information about

support groups, this association also holds an annual conference for for people with Down syndrome and

their families. People come to hear from experts that also appear at national conferences. This is a state

resource. The family will be contacting the association to find out when the conference is so they can go

meet other families and learn more about what resources are available to them.

Resource Type and Name State Resource-Wyoming Down Syndrome Association

Contact Information Phone: 307-742-6641, Address: 1150 North 3rd Street

Laramie, WY 82072, Website: http://www.wydsa.org/index.html, Email address: joelle@arkrs.org

Program information This program provides the family with resources they can use in their area, as

well as support from other families near them that are going through the same situation.

Policy Information Hours of operation depend on the activity, otherwise contact by email. No fees

Applications/Forms Include any forms or applications for consideration to this program or to

access services

Rationale: I am including this resource in the family plan because they provide not only information and

physical resources for the family, but also the emotional support and companionship of other families in

the same situation. Knowing they have support can better the marital relationship between Kim and Lee,

which is what our goal is.

2nd Family Concern/Priority: The Lee Family would like to know how to strengthen their relationships

within their immediate family, and know how to move forward in their current situation.
Current Resource/Information: They know how important it is to stick together at this time, but they

dont have much information about Down Syndrome which inhibits them from moving forward.

Outcome: The Ayumi family will be able to learn more about Kimberlees disability and how to best

move forward as a family.

Suggested Action: This online forum will provide support for the Ayumi family, as well as resources and

information about Kimberlees disability. It is suggested that the Ayumi family register for this forum and

use the resources and advice available to discuss what the best course of action would be for Kimberlee.

Resource Type and Name The DownSyn Forum is a community resource.

Contact Information Website: http://www.downsyn.com/phpbb2/index.php

Policy Information The Ayumi family will need to register on this website, which has agreement

terms and policies. These policies include not posting vulgar or abusive material, or else there will be a

permanent banning from the forum.

Hours: 24 hours a day

Rationale: This resource is included in the Ayumi family plan because it will allow them to receive

answers to the questions they have, as well as learn more about Kimberlees disability, along with

resources for helping her disability. This will allow the family to grow closer during their trying time.

Formal:

1st Family Concern/Priority: Because the Ayumi family has moved two hours away, they must now find

access to a new treatment team for their baby. This includes finding a new Pediatrician.

Current Resource/Information: The Ayumi family has received some help and information from their

past treatment team, but they know that they will need medical care for their baby in this new area.

Outcome: The family will be able to receive access and help from a new pediatrician closer to them.

Suggested Action: Contact the resources below and set up appointments for Kimberlee receive medical

attention from the pediatrician. The information needed to do this can be found below.

Resource Type and Name University of Colorado Health Pediatric Care

 Contact Information Phone: 970.284.3029 Address: Internal Medicine and Pediatrics - Snow

Mesa 4674 Snow Mesa Drive, Suite 120 Fort Collins, Colorado 80528

Website: http://care.uchealth.org/pediatrics Email Address: UC Health can be emailed from their website

Program information The University of Colorado Health Internal Medicine and Pediatrics

provides comprehensive health care for children in a personalized and comfortable atmosphere.

Our clinic combines Internal Medicine (primary care for adults) and Pediatrics (primary care for

infants, children and adolescents).

Policy Information Mission Statement: At UC Health Pediatrics, we believe that working with

parents and families helps us provide comprehensive health care for your child.

Hours: 8:30am-5pm Monday through Friday

Applications/Forms Standard medical forms

Pamphlets/Handouts

Rationale: The pediatrician Information was included because the family has moved and needs a new

pediatrician. A pediatrician is necessary for Kimberlee because she has multiple health problems and will

need to be seeing a doctor regularly. Finding a new pediatrician is going to be necessary to help their baby

progress and will also reduce stress for the family.

2nd Family Concern/Priority: After finding a new pediatrician, the Ayumi family needs to find a new

Speech Pathologist and Early Interventionist.

Current Resource/Information: The Ayumi family has received some help and information from their

past treatment team, but they know that they will need this specific medical care for their baby in this new

area.

Outcome: The family will be able to receive access and help from a new speech pathologist and early

interventionist closer to them.

Suggested Action: Contact the resources below and set up appointments for Kimberlee receive medical

attention from these therapists. The information needed to do this can be found below.

Resource Type and Name University of Colorado Health Childrens Therapy Services
 Contact Information Phone: 970-495-8780 Address: 1500 S. Lemay Avenue (a service of

Poudre Valley Hospital) Fort Collins, Colorado 80524

Website: https://www.uchealth.org/Pages/OHAM/OrgUnitDetails.aspx?OrganizationalUnitId=246 Email

Address: UCHealth can be emailed from their website

Program information Children's Therapy Services (CTS) provides evaluation, testing,

consultation and treatment/rehabilitation services including physical therapy and occupational

therapy, cleft palate clinic and speech and music therapy for children with developmental needs.

Policy Information Mission Statement: At UC Health Pediatrics, we believe that working with

parents and families helps us provide comprehensive health care for your child.

Billing: https://www.uchealthbillpay.org/FAQs.aspx?tabid=3

Hours: 8:30am-5pm Monday through Friday

Applications/Forms Standard medical forms

Rationale: UC Health Childrens Therapy Services provides Speech Therapy, Occupational, Therapy,

Physical Therapy, and many other therapies that can be of use for Kimberlee. This therapy center is a

great option for the Ayumi family because it has all the therapies in one convenient place. Finding a new

Speech Pathologist and Early Interventionist is going to be necessary to help their baby progress and will

also reduce stress for the family.

Material:

1st Family Concern/Priority: Kimberlee will need multiple materials to help with her development - one

of which being oxygen therapy.

Current Resource/Information: The hospital will provide oxygen, but nothing else.

Outcome: Kimberlee will have the materials she needs to be able to develop appropriately.

Suggested Action: There is an option to do an at home oxygen treatment through the oxygen clinic. This

clinic will provide oxygen therapy and the equipment necessary. This is a state resource.
 Resource Type and Name The Shandy Clinic is a state resource for oxygen therapy

Contact Information Phone: p: 303.494.1660 Address: 2760 29th Street, Suite 2A-2

Boulder, CO 80301 Website: http://www.shandyclinic.com/boulder/ Email address:

info@shandyclinic.com

Program information This program provides a variety of therapies, but most importantly oxygen

therapy. Hyperbaric oxygen therapy (HBOT) is a medical treatment which enhances the bodys natural

healing process by inhalation of concentrated oxygen.

Policy Information Hours are Mon-Thurs. 8:00 a.m-6:00 p.m. All co-payments are due at the time

of service. They will file insurance claims on your behalf and do everything they can to be paid by your

insurance company.

Applications/Forms Standard medical information forms

Rationale: This resource is included in the Ayumi family plan because Kimberlee will need oxygen

therapy as well as the materials that go along with it. This resource will provide the materials she needs,

plus more.

2nd Family Concern/Priority: Kimberlee will need exercise/therapy mats to increase her mobility

Current Resource/Information: The family understands that the therapy mats are to increase strength and

mobility.

Outcome: The Ayumi family will be able to know where they can get the resources needed for Kimberlee

to increase her mobility.

Suggested Action: Exercise/therapy mats are also known as yoga mats. They are available on Amazon for

anywhere between $8.00 and higher. This will increase mobility and build strength.

Resource Type and Name: Amazon.com is a national resource

Contact Information: amazon.com

Program information: This is just a website the family can use to receive the materials Kimberlee will

be needing to increase her mobility and strength.

 Policy Information: There are privacy policies that apply, as well as patent policies that must be

followed.

Rationale: This resource is included in the Ayumi family plan because Kimberlee is in need of exercise

mats to increase physical development. This resource will allow the Ayumi family to receive the materials

they need, without spending more than what is necessary.

 Table of Contents

Information Resources

Rocky Mountain Down Syndrome Association- email: info@rmdsa.org phone:303-797-

1699

American Heart Association- phone: (303) 801-4630 Website:

http://www.heart.org/HEARTORG/Affiliate/Denver/Colorado/Home_UCM_SWA030_A

ffiliatePage.jsp#

Informal Resources

Wyoming Down Syndrome Association- Phone: 307-742-6641, Website:

http://www.wydsa.org/index.html, Email address: joelle@arkrs.org

The DownSyn Forum-Website: http://www.downsyn.com/phpbb2/index.php

Formal Resources

University of Colorado Health Pediatric Care Phone: 970.284.3029 Website:

http://care.uchealth.org/pediatrics Email Address: UC Health can be emailed from their

website

University of Colorado Health Childrens Therapy Services- Phone: 970-495-8780

Website:https://www.uchealth.org/Pages/OHAM/OrgUnitDetails.aspx?OrganizationalUn

itId=246

Material Resources

The Shandy ClinicPhone: p: 303.494.1660 Website:

http://www.shandyclinic.com/boulder/ Email address: info@shandyclinic.com

Amazon-Website: Amazon.com