SPED 421: Family Resource Plan 2017

For the Taylor Family

Created on 2/28/17

Review Due (6 months) 8/28/17

Created by Arianna Birth, Jiae Park, Sheridan Hartman, Kylie Stradling

(names of service coordinators)

FAMILY INTRODUCTION

The Taylor family consists of Mr. and Mrs. Taylor as well as their four children Trent, Bailey, Tyler

and Breanne. Trent is the oldest, he is 11, and he loves being with his friends he also enjoys reading

fantasy novels. Bailey is 8 and she enjoys playing dolls and being outside with her siblings. Tyler is 5 and

loves riding his bike. However, he recently hurt his leg, which makes it difficult for him to ride it. Breanne

is almost a year old; she needs lots of attention from mom and dad. They are members of the

scientology religion. They come from an Irish family and try to hold onto some of that culture. They

recently moved to Salt Lake City, Utah because Mr. Taylor’s job moved them there. The children have

made friends and feel supported by the people around them. Mr. and Mrs. Taylor indicate they have had

difficulty with meeting people due to their cultural and religious differences.

Mr. and Mrs. Taylor are worried about Tyler. He walked developmentally late, at 23 months of

age. He has been walking fine for a few years but he fell of his bike and broke his leg. The doctors took

care of him and eventually he was permitted to walk again but he didn’t want to. It took him a while but

he is walking again. Mrs. Taylor is concerned because he is having a hard time walking up stairs and

exhibits “waddling gait”. The Taylor's do not feel that his doctors are providing enough information or

help with the situation.

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 SPED 421: Family Resource Plan 2017
FAMILY STRENGTHS

Overall, the Taylor family is very close. Mr. and Mrs. Taylor have a good relationship and they

enjoy spending time together by going on date nights once or twice a month. In addition, they make

time to be with their children individually. They do this every night as they put each of their children to

bed. Mrs. Taylor helps her two older children with their homework and she occasionally volunteers at

the local Elementary school where her three children attend. Their extended families try to keep close by

calling and visiting as much as possible. Both Mr. and Mrs. Taylor’s parents are alive and in good health.

They are especially supportive in regards to everything that is going on with Tyler.

INFORMATION SUPPORT

1st Family Concern/Priority: 1st Family Concern/Priority: Mrs. Taylor knows that she will need financial

support when resources and supports are found. She wants to know where she can look to find financial

support and resources to help Tyler.

Current Resource/Information: The Doctor explained that there was a new drug made available to help

treat Duchenne Muscular Dystrophy called “Emflaza”; treatment costs $89,000 per year.

Outcome: Mrs. Taylor will understand how to get financial help for the resources that they will need.

Suggested Action: Mrs. Taylor will fill out the forms on the MDA website to find financial help for Tyler’s

needed resources. Once she has done this people from MDA will be in contact with her and can lead her

to more resources.

 Resource Type and Name- MDA In Utah -Utah Office (National)

 Contact Information-
o Address: 849 WEST LEVOY DRIVE

# 210

SALT LAKE CITY, UT 84123

o Phone: 801 278-6200
o Website: saltlakecitysouth@mdausa.org

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 SPED 421: Family Resource Plan 2017
 Program information- This website provides a gateway to receive services and get involved in the

Muscular Dystrophy community. There are many services that can be provided such as support

groups, resources for care clinics, summer camp info, and MDA services for individuals and

families. This website is a great place to start searching for financial help and resources that Tyler

could use.
 Policy Information-
o Hours are from 9AM to 5 PM.
o “Contact your local MDA office to register with us for free. Registered individuals have

access to our nationwide network of Care Centers, Summer Camps for kids ages 6 to

17, support groups, equipment assistance, educational programs, our Quest

Magazine and more. We are here to help you when and where you need us.”
 Applications/Forms-
 Pamphlets/Handouts-

Rationale: With the help of MDA, Mrs. Taylor will have a better understanding of resources that are

available to Tyler and the rest of the family. She will be able to talk to people who have worked with

many people who have a family member with a muscular dystrophy or people that have a muscular

dystrophy. Mrs. Taylor will be directed to which health care will assist them the most.

2nd Family Concern/Priority: Mrs. Taylor would like to find a resource that explains what other families

who have a child who has Duchenne Muscular Dystrophy have gone through. She wants information to

help guide her to know how to care for her son and also to explain what she could expect. These

sources could also provide information on what help these families received and how they got the help.

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Current Resource/Information: Mr. Taylor has a friend who has Distal muscular dystrophy, he was

diagnosed at the age of 40.

Outcome: Mrs. Taylor will have more information on families who have had children with Duchenne

Muscular Dystrophy and know how to care for Tyler.

Suggested Action: Mrs. Taylor should look at the book list and the blog list provided and also do some

research on her own. She should read the books and blogs to learn about what her son may face and

how she can support him.

 Resource Type and Name-

o Book Titles:
 “In Your Face Duchenne Muscular Dystrophy All Pain All Glory”- By Misty

VanderWeele- $17.95+ shipping and handling.

(http://www.lulu.com/shop/misty-vanderweele/in-your-face-duchenne-

muscular-dystrophy-all-pain-all-glory/paperback/product-18173353.html)
 “Moonrise: One Family, Genetic Identity, and Muscular Dystrophy”- Penny

Wolfson- $0.01+ shipping and handling on amazon.com.

(https://www.amazon.com/Moonrise-Genetic-Identity-Muscular-

Dystrophy/dp/0312289081)
 “Worth the Ride: My Journey with Duchenne Muscular Dystrophy”- Josh

Winheld 0.01+ shipping and handling on amazon.com.

(https://www.amazon.com/Worth-Ride-Duchenne-Muscular-

Dystrophy/dp/098145710X/ref=cm_cr_arp_d_product_top?ie=UTF8 )
o Blogs:
 http://www.sweetsaraya.com/ - A mother who has a son who was diagnosed

with Duchenne Muscular Dystrophy shares her family’s experiences.

 https://strongly.mda.org/ - Muscular Dystrophy Association’s blog in which they

share news regarding muscular dystrophy and inspiring stories.

 http://johnrsf.blogspot.com/ - A question and Answer Blog with a 45-year-old

man named John who has Duchenne Muscular Dystrophy.

 Contact Information-

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o (http://www.lulu.com/shop/misty-vanderweele/in-your-face-duchenne-muscular-

dystrophy-all-pain-all-glory/paperback/product-18173353.html)
Lulu’s phone number: 844-212-0689. (if you have questions about your order.)
o (https://www.amazon.com/Moonrise-Genetic-Identity-Muscular-

Dystrophy/dp/0312289081)
(https://www.amazon.com/Worth-Ride-Duchenne-Muscular-

Dystrophy/dp/098145710X/ref=cm_cr_arp_d_product_top?ie=UTF8 )
Amazon’s phone number: 1 (888) 280-4331. (If you have questions about your order.)
 Program information- These books and blogs will help to give more information on daily life with

Duchenne Muscular Dystrophy.

 Policy Information-
o Lulu’s policy: Lulu Press, Inc. ("Lulu," "we," "us") respects your privacy, including the

privacy of your personal information. This Privacy Policy explains what information we

collect through our website at www.lulu.com, www.lulujr.com, www.picture.com and

www.replayphotos.com (collectively, the "Site") and our other services, and how we use

this information to provide outstanding service to you. By accessing and using the Site or

other services owned and/or operated by Lulu (collectively, the "Site"), you agree to the

terms and conditions of this Privacy Policy. If you do not agree to the terms and

conditions of this Privacy Policy, please do not use the Site. If you feel that Lulu is not

abiding by this Privacy Policy, you should contact us. Lulu's offices are located at 627

Davis Drive, Suite 300, Morrisville, NC 27560. We will do our best to resolve your inquiry.
o Amazons Policy: If you choose to visit Amazon.com, your visit and any dispute over

privacy is subject to this Notice and our Conditions of Use, including limitations on

damages, resolution of disputes, and application of the law of the state of Washington. If

you have any concern about privacy at Amazon.com, please contact us with a thorough

description, and we will try to resolve it. Our business changes constantly, and our

Privacy Notice and the Conditions of Use will change also. We may e-mail periodic

reminders of our notices and conditions, but you should check our Web site frequently

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 SPED 421: Family Resource Plan 2017
to see recent changes. Unless stated otherwise, our current Privacy Notice applies to all

information that we have about you and your account. We stand behind the promises

we make, however, and will never materially change our policies and practices to make

them less protective of customer information collected in the past without the consent

of affected customers.
 Applications/Forms- Fill out information/ forms when you buy books, nothing to fill out for the

blogs.
 Pamphlets/Handouts-

Rationale: The sources listed above will give Mrs. Taylor a better idea of what to expect with Tyler’s

circumstances. Mrs. Taylor will be able to choose what she thinks will be best to read and by reading will

be lead to new resources and new ideas of how to care for Tyler and the rest of her family.

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 SPED 421: Family Resource Plan 2017

FORMAL SUPPORT

1st Family Concern/Priority: Tyler’s diagnosis of Duchenne Muscular Dystrophy will require physical

therapy to maintain his muscular strength. Duchenne Muscular Dystrophy is a degenerative disease that

will continue to weaken his muscular strength.

Current Resource/Information: Mrs. Taylor understands the purpose of physical therapy as she is

currently going through physical therapy in order to heal from her car accident.

Outcome: The Taylor family will understand what child physical therapy entails and what they need to do

to adequately prepare for sessions that will help Tyler and the rest of the family.

Suggested Action: Mrs. Taylor will call the office of Michael Workman to schedule a consultation and

treatment for her son, Tyler, so that he may begin physical therapy as quickly as possible.

 Resource Type and Name- Private Resource, Michael J. Workman PT, C/NDT through Professional

Therapies
 Contact Information-
o You may go to their website to submit an e-mail. You may call at (800) 712-5567.
o Here is the link to their website: http://www.professionaltherapies.com/Contact-Us.aspx
o Address:
 Professional Therapies Inc.
 P.O. Box 58518
 Salt Lake City, UT 84108 (see website)
 Program information-According to their website patrons will need to have a consultation, an

evaluation and then treatment. Here is information from the website:

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 SPED 421: Family Resource Plan 2017
o “PHYSICAL THERAPY SERVICES
o Free 15 minute phone consultation for first-time encounter
o Physical Therapy Evaluation
o Physical Therapy Treatment
o Training events for parents and groups
o Phone consultation with parents and other health professionals
o Public speaking”
o (see website here: http://www.professionaltherapies.com/Physical-Therapy-

Services.aspx).
 Policy Information-
o On the website it says, “Professional Therapies is open for business Monday-Friday from

9 am - 5 pm MST. We are closed Saturday, Sunday and most holidays.” (See link here:

http://professionaltherapies.com/Clinic-Hours-Location.aspx)
o You can call to make an appointment. It does cost money to be in therapy. On the

website it says, “Physical Therapy Individual Treatment Sessions ($125 USD)

 This follow-up appointment with Michael J. Workman PT is held at the clinic, the

home or in the community depending on the goals and needs of the client. This

appointment includes individualized hands-on treatment with parent education,

training and written home program updates. Treatment is typically provided on

Tuesday's and Thursdays from 9 am to 5 pm and Friday's from 2 pm to 5 pm (all

times Mountain). Take advantage of our discounted rate of $105/session for

our clients booking 4 or more treatment sessions in advance.”

o In addition, the website does include a privacy policy. Here is some of that information

below:
 “Your privacy is critically important to us. At Professional Therapies we have a

few fundamental principles:

 We don’t ask you for personal information unless we truly need it. (We can’t

stand services that ask you for things like your gender or income level for no

apparent reason.)
 We don’t share your personal information with anyone except to comply with

the law, develop our products, or protect our rights.

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 SPED 421: Family Resource Plan 2017
 We don’t store personal information on our servers unless required for the on-

going operation of one of our services.”

o Website listed here: http://www.professionaltherapies.com/Rates-and-Policies.aspx ,

http://professionaltherapies.com/PT-Privacy-Policy.aspx
 Applications/Forms- Per the website, I don’t see any applications that are needed to be filled

out.
 Pamphlets/Handouts-

Rationale: The Taylor family will have resources they need to help their son, Tyler. Tyler will continue to

maintain his strength as he works with Michael Workman.

2nd Family Concern/Priority: The Taylor family needs information on professional family counselors in

their area.

Current Resource/Information: Mr. and Mrs. Taylor are currently working with a marriage counselor and

they do understand the benefits of talking with a counselor.

Outcome: The Taylor family will have less stress as they talk with a counselor in order to learn of different

strategies and techniques to help Tyler.

Suggested Action: Mr. or Mrs. Taylor will call to schedule time to meet with a counselor as a family.

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 Resource Type and Name- Private Resource, The Salt Lake Marital and Family Therapy Clinic
 Contact Information-
o 420 East South Temple
Suite 550

Salt Lake City, Utah 84111

o 801-521-5068
o margaret@saltlakemarital.com
o Here is the link to the website:

http://www.saltlakemaritalandfamilytherapy.com/services.php?id=2
 Program information- Per the website it says, “A child or parent with individual problems can

impact the entire family system; we teach families effective ways to cope with life stressors.” See

link here: http://www.saltlakemaritalandfamilytherapy.com/services.php?id=

 Policy Information- This is a policy they have on their website:
o “Cancellation Policy
 We have a ‘tough love’ cancellation policy. If you are unable to make your

scheduled appointment, we require a minimum of 24 hours notice for

cancellation or we charge the full amount for your missed appointment.

(Monday appointments must be cancelled by the Friday before). This is firm.

Tough love. No exceptions. We offer the same policy in return. If we miss your

appointment, no matter what reason, we give you a free session.”

o The website has also included the following information:
 “Rates

Margaret Thompson, LCSW $150 per 45 minute session

Francine Baffa MSW, PhD $130 per 45 minute session

Katie Benns, ACMHC $130 per 45 minute session”

o Furthermore, their hours are listed on the website:
 “ FRONT DESK HOURS: Mon 10-4, Tues 8-5, Wed 10-5, Thur 8-5, Fri 10-5”
o (Links:http://www.saltlakemaritalandfamilytherapy.com/fees_policies.php,

http://www.saltlakemaritalandfamilytherapy.com/index.php)
 Applications/Forms- Here are some forms that will need to be filled out for the counselor:

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o http://www.saltlakemaritalandfamilytherapy.com/files/pdf/Case%20Presentation

%202014.pdf
o http://www.saltlakemaritalandfamilytherapy.com/files/pdf/Couples%20Therapy

%20BluePrint%202014.pdf
o http://www.saltlakemaritalandfamilytherapy.com/files/pdf/client-information-form.pdf
o http://www.saltlakemaritalandfamilytherapy.com/files/pdf/service-agreement.pdf
o Here is the website that has the forms:

(http://www.saltlakemaritalandfamilytherapy.com/fees_policies.php)
 Pamphlets/Handouts- Here is information on Margaret Thompson –
 https://therapists.psychologytoday.com/rms/name/Margaret_Thompson_LCSW

_Salt+Lake+City_34700
o You can also sign up for their newsletter by going to their website. Here is a handout I

created:

Rationale: The Taylor family will receive the help they need as they speak to one of the qualified

counselors that is located in the area they live in. The counselor will provide strategies to help the family

with the stresses of their daily life.

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INFORMAL SUPPORT

1st Family Concern/Priority: Mr. Taylor is interested in finding a support group to help him understand

more about Duchenne Muscular Dystrophy.

Current Resource/Information: Mr. Taylor doesn’t know anybody that has a children with muscular

dystrophy. He is unsure of what lies ahead.

Outcome: Mr. Taylor will have people he can talk to and gain support from. He can gain more information

on his child’s disability through interacting with other parents with children in the same situation.

Suggested Action: The Taylor family will fill out a service request form on the MDA website to gain more

information on Muscular Dystrophy and to find local support for Mr. Taylor in Salt Lake City.

 Resource Type and Name- This is a National Resource/ Muscular Dystrophy Association.
 Contact Information-
o Phone: (801) 278-6200
o Address: 849 West LeVoy Drive #210. Salt Lake City, UT 84123
o Website: https://www.mda.org/office/utah
o Email Address: saltlakecitysouth@mdausa.org
 Program information- This association strives to find help children and adults live longer and

stronger by finding research breakthroughs amongst various diseases, as well as provide service

and support to families all across America.

 Policy Information- Office hours are 9AM to 5 PM Monday through Friday. Services are provided

to the family at no cost to them.

 Applications/Forms- Link to Services Request:
o https://www.mda.org/services/request-for-services
 Pamphlets/Handouts- Link to Handout:

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o https://www.mda.org/sites/default/files/2017_MDA_Fact_Sheet_National.pdf

Rationale: MDA will provide the Taylor family with a credible resource to learn more about Muscular

Dystrophy and receive the services that Tyler may need. MDA will help the family meet their outcome by

providing local support groups that the family can lean on and gain support from.

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2nd Family Concern/Priority: Tyler wants to be able to get out of the house and do things with a friend.

Current Resource/Information: Tyler has lost a lot of his friends due to his physical impairments. A

teacher at school mentioned a program he could use to help him find people he could do things with.

Outcome: Tyler will have somebody he can go out with and participate in activities that he can do.

Suggested Action: Mr. and Mrs. Taylor will research the Big Brothers Big Sisters of America program and

fill out an application for Tyler to join the program.

 Resource Type and Name- This is a Community Resource/Big Brothers Big Sisters of America.
 Contact Information-
o Phone: (801) 743-1682 or (801) 313- 0303.
o Address: 2121 S. State Street Suite 201. Salt Lake City, UT 84115
o Website: http://bbbsu.org/
o Email address: general@bbbs.org
 Program information- This is a community resource funded by communities nationwide to

provide lasting relationships between adult volunteers and children aged 6-18 years old. This

agency carefully matches one adult volunteer (bigs) to one child (littles) through detailed

research and screenings.

 Policy Information- The company has a privacy policy regarding how and what they use your

personal information for. Office Hours are 9 AM to 5PM. This is a non-profit organization
 Applications/Forms- Link to application process:
o https://aim.bbbs.org/einquiry/einquiryzip.aspx?t=1
 Pamphlets/Handouts- Link to brochure: https://www.fhn.org/docs/fhn-bbbs-capabilities-

brochure.pdf

Rationale: Big Brother Big Sisters of America will benefit the family by giving Tyler the opportunity to get

out and have fun. It will meet their outcome by Tyler being able to have a one-on-one relationship with

the volunteer he is matched with through the program. It will also benefit him by being able to

participate in activities at his level.

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MATERIAL SUPPORT

1st Family Concern/Priority: The Taylor family would like to know more about where they can get

services for adapting wheelchair for Tyler.

Current Resource/Information: The Doctors office has wheelchairs, which Tyler has been able to practice

on a bit.

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Outcome: The Taylor family will find a dependable hospital or company for wheelchair fitting services

for Tyler and they will know if they can get funding to buy the wheelchair.

Suggested Action: The Taylor family will contact Shriners hospital and make an appointment to see if the

hospital can offer a proper service for Taylor’s wheelchair.

 Resource Type and Name- This is a Community Resource/ Shriners Hospital

 Contact Information-
o 801-536-3500
o 1275 E. Fairfax Rd., Salt Lake City, UT 84103
 Program information- The wheelchair, seating and mobility program at Shriners Hospitals for

Children — Salt Lake City is an in-house custom seating clinic available to all patients with seating

needs. Their staffs are composed of practitioners, technicians and volunteers.

 Policy Information- You can contact the hospital weekdays between 8:00a.m. to 5 p.m. Services

are available when children are under age 18 and are diagnosed within scope of services offered

by the hospital.
 Applications/Forms- There is no application or form to fill out
 Pamphlets/Handouts-
o Here is information on Wheelchair and seating services by Shriners Hospital:
Hhttp://www.shrinershospitalsforchildren.org/Locations/saltlakecity/Care/Orthopaedics

/Wheelchair-and-seating-services#
Rationale: Shriners hospital will be able to not only adjust his wheelchair, but also medical services he

needs. Also, if the Taylor family cannot afford the cost the hospital will still offer services funded by

donation they get.

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2nd Family Concern/Priority: Since Mrs. Taylor cannot lift Tyler, she needs to find and get some

equipment that help her to lift Tyler out of the bath or out of bed, and she also wants to know if she can

get financial help from the government to get the equipment.

Current Resource/Information: Mrs. Taylor has heard that there was lifting equipment but doesn’t know

where she needs to go get it.

Outcome: The Taylor family will figure out what kind of equipment they can use to lift Tyler out of his bed

or bath tub, and if there is any financial help they can get to get the equipment for Tyler.

Suggested Action: The Taylor family will get proper lifting equipment from 101 Mobility, and the family

will contact to the school to get financial help for purchasing lifting equipment under IEP.

 Resource Type and Name- This is a Community Resource/101 Mobility

 Contact Information-
o 801-960-3354
o 9380 South 670 West Sandy, Utah 84070

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 Program information- This is a community resource and this company provides lifting

equipment.
 Policy Information-
o The office is open Monday through Friday 9:00 a.m. to 5:00 p.m.
You can call the office and they will give you consultation and price.
 Applications/Forms- There is no application or form to fill out
 Pamphlets/Handouts-
o Link to brochure:
http://utah.101mobility.com/accessibility-products/

Rationale: Getting lifting equipment is necessary for the Taylor family. Since 101 Mobility is located in

their community, the Taylor family will be able to get services to maintain the lifting equipment.

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 signatureDate Parent/Legal Guardian signatureDate

Service Coordinator Signature Date

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