Part C

Information

Concern #1: Mr. and Mrs. Li are not familiar with down syndrome. Understanding what

physical limitations Sue will have is important to them to know what to expect and look for.

Current Resource/Information: They have very limited knowledge about down syndrome and

have had poor experiences with doctors and refuse ask them for information.

Outcome (What will be accomplished by using this resource): The Li family will be able to

learn about down syndrome in an anonymous way from this website and can consult this

resource at any time without having to interact with doctors.

Suggested Action (Everything the parent needs to know to access the resource):

The Li’s should, as soon as possible, should go to this website: http://www.ndss.org/. There is

much they can explore on this website, but we suggest they hover over the tab at the top labeled,

“Down Syndrome”. This will make a drop-down menu appear. From this menu they should

select the first option, “What Is Down Syndrome?”. This page lists questions about down

syndrome and professional, research-based answers. At the bottom of this webpage there is also

a list of other resources they can explore in addition to the rest of this website.

Resource type and name: National Down Syndrome Society (NDSS) is the title of the website,

http://www.ndss.org/.
Contact information: Website http://www.ndss.org/

Email: info@ndss.org

Helpline: 800-221-4602

Program information: This is a resource offered online, sponsored by the National Down

Syndrome Society. It is an organization with a mission to protect the human rights of individuals

with Down Syndrome and a vision of a future where all individuals with Down Syndrome are

valued, enabled to increase their quality of life, and achieve their dreams and goals. This website

offers a wide variety of information and resources related to Down Syndrome, as well as ways to

get involved locally.

Policy information: The National Down Syndrome Society website is copyrighted, but

encourages those who browse it to download and use information from the website for personal

use. The website can be accessed by the general public for free. It is committed to protecting the

privacy of those who visit this website.

The privacy policy can be found here: http://www.ndss.org/privacy-policy/

The Terms & Conditions can be found here: http://www.ndss.org/Terms-and-Conditions/

Applications/ forms: An application does not need to be filled out for this website.

Pamphlets/ handouts: There are multiple handouts and other resources that can be printed off of

this website at http://www.ndss.org/Resources/Publications/Printed-Materials/. One of these

resources is included in this packet; “A Promising Future Together: A Guide for New and

Expectant Parents” (http://www.ndss.org/Global/NDSS%20NPP-English.pdf).

Rationale (Why did you choose this resource for the family- this should be 2-3 sentences):

This resource will be beneficial to the Li family because they can remain anonymous, they won’t

have to interact with doctors or make appointments. They can access this resource at any time for

information and can browse through at their leisure or as questions and concerns arise. This

website is extremely user-friendly; it is easy to navigate and they can quickly find the

information they are looking for

Concern #2: The Li’s are concerned about Sue’s cognitive development and what educational

programs will be available to aid her.

Current Resource/Information: Currently, the Li family knows of no educational programs for

children with Down Syndrome.

Outcome (What will be accomplished by using this resource): This resource will provide

information about the various early intervention educational programs available to them.

Suggested Action (Everything the parent needs to know to access the resource):

The Li family should apply for this early intervention program as soon as possible. It is run by

DDI Vantage (Discover. Develop. Impact.). If they have questions about Early intervention, they

can go to http://ddivantage.org/ and click on the heading at the top of the page that says, “Early

Intervention”. Halfway down this page in a pink box under “Frequently Asked Questions” they

can click on “See Questions and Answers”. Once they have learned about Early Intervention
they can scroll back up to the top of that page and click on the button under the picture that says,

“Submit a Referral” (http://ddivantage.org/earlyintervention/referral/) and fill out the online

form to have Sue considered for the Early Intervention Program. After the referral has been

processed, DDI Vantage will make contact with the family to further assess eligibility and the

make and Individualized Family Service Plan (IFSP).

Resource type and name: DDI Vantage is website with information about early intervention and

a form to refer a child for early intervention. This resource is sponsored by the state as part of the

Baby Watch Early Intervention Program.

Contact information: Website: http://ddivantage.org/

Phone Number: (801) 266-3979

Program information: This is a non-profit early intervention program available to the Salt Lake,

Duchesne and Tooele counties for children birth to three with developmental disabilities and

delays through Utah’s Department of Health Baby Watch Early intervention Program. They

provide intervention in the child’s natural environment and offer a wide variety of services at

little to no cost.

Policy information: DDI Vantage’s policy is to provide the best services they can to help

children and families with disabilities to become more independent and develop as a non-profit

organization.

Applications/ forms: The application can be found here

http://ddivantage.org/earlyintervention/referral/ and is simple to fill out; minimal information is

required.
Pamphlets/ handouts: There are no pamphlets or handouts associated with this resource.

Rationale (Why did you choose this resource for the family- this should be 2-3 sentences):

This resource is easy to access online and is available to their area. It quickly and clearly

provides information about early intervention and the referral process is simple. Little effort has

to be done on the family’s part, and Sue is guaranteed to be accepted into the program with

Down Syndrome.

http://www.peatc.org/peatc.cgim?template=menu_of_services

Informal

Concern #1: Da Wei struggled to bond with Sue because of her facial deformity. Kai is

concerned that this will put a strain on their family and their marriage as she loves Sue

completely despite her personal fears and Sue’s deformities and disability. (online anonymous

chat group)

Current Resource/Information (Name): Mr. and Mrs. Li currently don’t know of any support

groups for their particular situation.

Outcome (What will be accomplished by using this resource): Mr. Li will be able to gain

insights and advice from other fathers of children who have disabilities, which will comfort Mrs.

Li’s worries.
Suggested Action (Everything the parent needs to know to access the resource):

Da Wei will immediately apply for the online support group, where he can remain anonymous.

He will be able to talk to other parents who have gone and are going through a similar situation

of trying to connect with their children who have congenital birth defects.

Resource type and name: Come Unity is a company funded by the community with a mission to

give support to many types of unique families.

Contact information: Website- http://comeunity.com/

Email- cleftchat-subscribe@yahoogroups.com

Program information: This is a community resource offered online. Parents and professionals

work together to create support groups and provide information to parents on parenting,

adoption, and special needs.

Policy information: The services provided by comeunity.com are free to the public.

Applications/ forms: An application doesn’t need to be filled out. To join the support group,

simply send a blank email to cleftchat-subscribe@yahoogroups.com to be added to the group. If

he desires to do so, he can use a non identifying email address to join.

Pamphlets/ handouts: There aren’t any handouts from comeunity.com, however, a screenshot of

the web page is included in this packet.

Rationale (Why did you choose this resource for the family- this should be 2-3 sentences):

This resource will be beneficial to the Li family because they can remain anonymous. Da Wei

will be provided with support from others who have a better understanding of his situation,
hopefully bringing greater peace to his mind about his feelings without having to personally

claim the emotions.

Concern #2: With an unsupportive family, Kai is concerned that she won’t know how to

advocate for Sue when talking with her family.

Current Resource/Information (Name): Kai currently only knows basic information about

down syndrome, however, not as much as she would like to know about the misconceptions and

other myths.

Outcome (What will be accomplished by using this resource): Having a greater understanding

of the truth behind misconceptions involved with down syndrome will give Kai greater

confidence to advocate for her daughter, especially to her parents and in-laws.

Suggested Action (Everything the parent needs to know to access the resource): Kai will

read about the myths and truths of down syndrome so that when her parents or in-laws ask

probing questions, she will be able to know how to answer them.

Resource type and name: National Down Syndrome Society is a community resource paid for

by donations.

Contact information: Helpline- 800-221-4602

Email- info@ndss.org

Website- www.ndss.org

Program information: This is a great online resource where Kia will be able to access resources

regarding myths and truths about down syndrome. She will also have the opportunity to ask

questions through the NDSS email that she can use to present to her parents and in-laws.
Policy information: This website allows free access to anyone.

Applications/ forms: There aren’t any applications to use this website.

Pamphlets/ handouts: A copy of the myths and truths page is added to this packet, as well as a

screenshot of what the web page looks like.

Rationale (Why did you choose this resource for the family- this should be 2-3 sentences):

This is a beneficial resource to Kai as it will give her a source to go to as she works to defend her

daughter. She will have the opportunity to share the information with her parents and in-laws, as

well as share the info email with them as they have further questions.

Formal:

Concern #1: Because of Sue’s cleft lip and down syndrome, she will need occupational therapy.

Seeing a therapist soon will be important to ensure her mouth is building strength to suck for

feeding.

Current Resource/Information (Name): At this time, the Li’s don’t know of any or where to

find occupational and speech therapy services.

Outcome (What will be accomplished by using this resource): Baby Sue will be able to

receive occupational and speech therapy to strengthen her muscles and better her motor abilities.

Suggested Action (Everything the parent needs to know to access the resource): Mr. and

Mrs. Li are going to be able to help their child Baby Sue receive the services that she needs to

better her motor and speech skills.

Resource type and name: Functionabilities: Learning to play, and playing to learn. `
Contact information: Helpline: (800) 472-9515

Email- info@makingtherapyfun.com

Website- https://www.makingtherapyfun.com

Program information: This is a family friendly environment that provides different types of

services that is affordable and easily accessible.

Policy information: The website allows access to anyone.

Applications/ forms: There is no application necessary.

Pamphlets/ handouts: There are no pamphlets but a website that is very informative.

Rationale (Why did you choose this resource for the family- this should be 2-3 sentences):

This is a family friendly environment that provides more than just one therapy which can

extremely benefit the Li family because they won’t have to find many different facilities. Also

this therapy office accepts many different insurance companies and Medicaid which can and may

be helpful in the future.

Material

Concern 1:

Due to Sue’s health conditions she is required to have oxygen. Therefore they will need to

purchase oxygen tanks.

Current Resource/Information (Name): The hospital has showed them what they needed and

how to work it, they just need to find a provider. They decided on Alpine Home Medical
Outcome: The oxygen is for health reasons. This resource will keep her healthy and alive in this

aspect of her health.

Suggested Action :The Li’s should contact Alpine Home Medical and visit the store.

Resource type and name: Alpine Home Medical is a shop that also has an online purchasing

option.

Contact information: Website- https://www.alpinehomemedical.com/index.htm

Phone: (801) 463-0044

Address: 4030 S. State Street, Salt Lake City, UT

Program information: This is a private resource offered online, and they offer rentals.

Policy information: The services provided by Alpine Home Medical are free to the public.

Applications/ forms: An application doesn’t need to be filled out.

Pamphlets/ handouts: There aren’t any handouts from Alpine Home Medical

Rationale: This resource will be beneficial to the Li family because they can remain anonymous,

or go in person to ask questions. The business is located in Salt Lake and nationally recognized

as the best home medical equipment provider. They also offer rentals, so the Li family will not

have to purchase oxygen supplies as baby Sue is likely to not require oxygen all her life.

Concern 2:
Due to Sue’s down syndrome, she will have fine motor skill delays, and will need more practice

and repetition to master such skills. Her parents are concerned her delays will set her apart from

her peers and further delay more development.

Current Resource/Information The Li’s have searched online to find resources for their baby.

They have decided on the Busy Cube as one of their purchases.

Outcome The Busy Cube promotes visual tracking, fine and gross motor dexterity, eye-hand

coordination and sensorimotor skills, so baby Sue will be able to practice through play and

repetition to improve these skills. This may help her master these skills more quickly and not be

so behind her peers.

Suggested Action: The Li’s should access the website to purchase the toy. They can also go to

the home page and browse for other toys that target specific skills that baby Sue may have delays

with. They should encourage her to play with the cube daily to help her build up muscle groups

and skills to aid her fine and gross motor dexterity, eye-hand coordination and sensorimotor

skills.

● Resource type and name: eSpecial Needs is website that sells products made specifically
for children with special needs.

● Contact information: Website:http://www.especialneeds.com/shop/special-needs-

toys/active-play/busy-cube.html

● Phone Number: (877)664-4565

 ● Program information: eSpecial Needs was started in 2002 for children with special needs
since resources were difficult to find for parents. Parents often had to rely on school

districts to supply such resources. Their mission is to make life easier for parents, more

enriching for children, and more enjoyable for the entire family. Their goals is to provide

children with special needs and their parents with the very finest products available. The

website, eSpecial needs is the leader in special needs products and therapeutics devices.

● Policy information: eSpecial Needs allows access and service to anyone.

● Applications/ forms: There are no applications, the website just requires a home address,
billing address, and credit card information.

● Pamphlets/ handouts: There are no pamphlets or handouts.

Rationale: Children with Down syndrome tend to need more practice and repetition of motor

skills than their typically developing peers, to achieve mastery and muscle memory. WIth

practice and encouragement they can progress in developing these skills. Children with Down

syndrome develop their motor skills in the same order as their typically developing peers, but

with some degree of delay. Having a toy that can help Baby Sue work on these skills will help

her progress. An online store may be the best option for the Li’s if they still want to keep a level

of anonymity. The toys on this website are specifically designed for children with special needs,

and categorized in sections for different needs. The Busy Cube was chosen because it is a mix of

several different toys, meaning baby Sue can practice different skills while playing with it.

Instead of having 5 different toys, she can have one center for play and development.