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Table of Contents

● Family Introduction (2-3)


● Family Strengths (3)
● Information Support
○ Financial Services- Payment assist (4-5)
■ Social Security’s Children Insurance Benefits
6303 Rugby Ave. Huntington Park, CA 90255
Phone: 1-800-772-1213
○ Children’s hospital- general information about disorder (6-8)
■ Children’s Hospital Los Angeles
4650 Sunset Blvd. Los Angeles, CA 90027
Phone: 888-631-2452
● Formal Support
○ Physical Therapy- Rehabilitation purposes (9-10)
■ St. Francis’ Rehabilitation Services
3630 East Imperial Highway, Lynwood, CA, 90262
Phone: 310-900-2776
○ Occupational Therapy- Daily life rehabilitation (11-12)
■ California- Occupational Therapy (Achieve Beyond)
8135 Painter Avenue Suite 201 Whittier, CA, 90602
Phone: 562-698-6600
● Informal Support
○ Scientology Assist- Spiritual Assist (13-14)
■ The Church of Scientology of Los Angeles
4810 W Sunset Blvd. Los Angeles, CA 90027
Phone: (323) 953-3200
○ Counseling- Family Support (15-16)
■ A Place Called Home, Counseling
2830 S Central Ave, Los Angeles, CA, 90011
Phone: 323-232-7653
● Material Support
○ Home lift- Transfering assist (17-18)
■ Macs Home Lift
2715 Seaboard Lane Long Beach, CA 90805
Phone: 562-634-5962 (800) 795-6227
○ Wheelchair- General Mobility for Jack (19-20)
■ National Equipment Program - Equipment assistance
6167 Bristol Parkway, Culver City, CA, 90230
Phone: 800-572-1717
● Contract Agreement (21)

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For the ​Osbourne​ Family

Created on​ 2/9/2018

date

Review Due (6 months)

date

Created by ​Alisha Nielsen, Keelie Potter, Emma Marion

(names of service coordinators)

FAMILY INTRODUCTION

The Osbourne’s are a family of three. Ozzy and Sharon are the parents to a son

named Jack. Jack is a five year old boy who loves to ride his bike. He is a happy child

who really enjoys spending time with his family and friends. The Osbourne’s are

Scientologists and have a strong Irish background. Their family moved from Ireland to

Los Angeles, California three months after Jack was diagnosed.Ozzy had been

traveling back and forth from Ireland to California to work with his band that he started

right before Jack was born. He has a love for music and his family has supported his

passion. It hasn’t been the most financially stable for the family but they have been

comfortable for their little family. With the diagnosis, they decided it was just time to

leave Ireland and move to the big city so they could get all the help possible for little

Jack. Sharon has always stood behind her husband. She enjoys spending time with her

husband and taking care of their son. In her down time, she usually reads a book or

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tries to see how things with the band are going. As Jack has gone through his trials, it

has become a blessing that the family moved to a big city.

When Jack was 5, he fell off of this bike and broke his leg. He was in a cast for 6

weeks before it was removed. Once it was removed, he refused to use that leg to walk.

Any attempts to make him walk, would result in frustration for anyone involved and him

screaming. Doctors do not seem to have answers for why he is not walking and just told

the family that it will take time to build back his muscles. After a month, he was finally

walking again however, he then started showing a more “waddling gait” while he

walked. After seeing a specialist, they had blood drawn, genetic tests ran, and a muscle

biopsy done. This resulted in finding out that Jack has Duchenne Muscular Dystrophy.

FAMILY STRENGTHS

The Osbourne’s are a strong family unit. They are very open with each other and

have a strong family bond. They try to keep their ties strong with their Irish culture and

their religion of Scientology. They also have a great team of doctors in their city to help

guide them and find the help they need. Even though they are farther away, they still

keep strong family bonds with their extended family for support and guidance.

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INFORMATIONAL SUPPORT

​ ​ Family Concern/Priority: ​The family needs financial assistance due to the toll
1st

Jack’s unexpected condition has had on them. They need to be able to find programs

that can help to give them the financial support for the things that they stand in need of.

Current Resource/Information:​ ​The family knows there are financial aid programs

available to families with a child with a disability. The family wants to know what

program is going to be most beneficial to them.

Outcome: ​The hoped outcome is to be able to receive the funds that the family will

need to be able to pay for the expenses that they see adding up. The family will need

help paying for therapists, lifts, wheelchairs, and physicians.

Suggested Action:

· ​ Resource Type and Name: ​Federal, Social Security’s Children Insurance Benefits

· ​Contact Information: ​6303 Rugby Ave. Huntington Park, CA 90255

(1-800-772-1213)

· ​Program information:​This program benefits children of people who are working

and paying taxes. The children must be disabled to receive these benefits.

· ​Policy Information:​You will need the child’s birth certificate, and the parent’s and

child’s social security numbers. Hours of operation are on weekdays 7AM-7PM and they

are closed on Saturday and Sunday.

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· ​ Applications/Forms​:​https://www.ssa.gov/forms/ssa-3820.pdf

· ​Pamphlets/Handouts:​ See next page

Rationale:​ Ozzy and Sharon need some financial help with paying for the doctor visits

and other resources. This program will allow them to gain some financial help to get the

resources that Jack needs to get through daily life.

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​ ​ Family Concern/Priority:​ The Osbournes want more information on where Jack
2nd

can be treated. They have just recently moved and are not familiar with this area and

the resources at this time. They want reliable doctors who specialize in children.

Current Resource/Information:​ They are concerned about all the different hospitals

that can treat Jack and which one has the best resources for their son.

Outcome:​ ​The family will have a broader knowledge of what the hospital has to offer for

Jack’s condition and which one specializes in his age range.

Suggested Action:

· Resource Type and Name: ​State, Children’s Hospital Los Angeles

· Contact Information:​ 4650 Sunset Blvd. Los Angeles, CA 90027, (888) 631-2452,

https://www.chla.org/request-appointment

· Program information: ​Properly managing the care of patients with neuromuscular

diseases is key in helping them experience a better quality of life and longer survival.

Our specialists work together as a team to arrive at a diagnosis and develop a

specialized, comprehensive care plan for each child's unique needs. They see the child

together, then discuss each patient in a meeting and develop their recommendations as

a group.

Team members include:

● Neurologists

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● Pulmonologists

● Cardiologists

● Medical geneticists

● Orthopaedic surgeons

● Nurse case managers

● Occupational, respiratory and physical therapists

● Physical Medicine and Rehabilitation

● Social workers

● Dietitians

A health care service coordinator from the MDA also is available on-site at the clinic to

help families learn about and access MDA's resources, including support groups and

summer camps.

· Policy Information:​ Many insurance plans require families to obtain “referrals”

and “pre-authorizations.” If your family's plan requires this, you will need to make sure

that authorizations or referrals are taken care of before you receive services at

Children’s Hospital Los Angeles.

● You may be able to schedule services before receiving notice of authorization.

The service may be canceled or rescheduled if authorization is not approved by

your insurance company. If your insurance company needs a referral and/or prior

authorization, call your primary care doctor before scheduling an appointment

with us.

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● This process will be different depending on the type of health insurance coverage

your family has.

Due to the complex nature of pediatric specialty care, our experts often request that

parents or referring pediatricians provide additional detailed health information prior to

first-time visits. Our staff will confirm the items you will need to bring to your visit with

you when you schedule your appointment. Examples of things you may be asked to

bring include:

● Medical records from visits with other doctors or medical experts

● X-ray films

● Lab results

● Medication list (including medication strengths, amounts taken, and

over-the-counter medication) or bring the original prescription bottles with you

● Information about your child’s allergies

· Applications/Forms:​ (888) 631-2452 ​https://www.chla.org/neuromuscular-clinic

· ​ ee next page
Pamphlets/Handouts:​ S

Rationale:​ ​Ozzy and Sharon need information about Jack’s condition. The Children’s

Hospital Los Angeles has a neuromuscular department with specialists that can provide

information and support to the Osbourne family. Within this department, they will have

access to the doctors and support staff they need.

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FORMAL SUPPORT

1​st​ Family Concern/Priority:​ ​The family knows that Jack’s situation can be helped with

physical therapy. They hope to be able to find a good physical therapist to be able to

improve Jack’s ability to move.

​ hey know that his muscles are weak. They also


Current Resource/Information: T

know that physical therapy is normally used to strengthen them. They are aware that

there are several physical therapists in their area, but their hope is to be able to find the

best one.

Outcome:​ T
​ he outcome of this is to help Jack to be able to be more mobile on his own.

The family also wants Jack to keep as much muscle mass as possible even though they

know he will continue to lose the muscle mass.

Suggested Action:

· Resource Type and Name: ​Community, Rehabilitation Services, Physical

Therapy

· Contact Information: ​3630 East Imperial Highway, Lynwood, CA, 90262

· Program information: ​310-900-2776

· Policy Information: ​We provide patient-centered, economical health services with

a focus on nurturing healthy children and families, building self-sufficiency, and

achieving excellence in facilities and technology with the ultimate goal of enhancing the

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health of our community.Rehabilitation Services provides comprehensive care, whole

person approach, physical therapy, speech therapy, occupational therapy, pediatric

occupational therapy and more. Hours are 7AM-4:30PM

· Applications/Forms: ​N/A

· Pamphlets/Handouts:​ See next page

https://stfrancis.verity.org/our-services/rehabilitation-services/

​ hrough the use of a physical therapist, Jack will be able to regain some of
Rationale: T

the strength that he has lost because of his disability. The goal of physical therapy will

be to hopefully help Jack to become more mobile as he goes about his everyday life.

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2​nd​ Family Concern/Priority: ​The family also wants an occupational therapist to help

Jack feel fulfilled and satisfied with his progress in life. They want someone to help

coach him in his daily activities to achieve the highest level of independence possible.

Current Resource/Information:​ ​They know this can be hard for a young child who

doesn’t understand his condition. They want him to feel like he’s progressing and

making accomplishments.

Outcome: J​ ack will feel like he can still be independent and will also have a sense of

accomplishment with all of his daily activities. He may be young, but the family still

wants him to grow as normal as possible.

Suggested Action:

· ​ Resource Type and Name: ​California- Occupational Therapy (Achieve Beyond)

· ​Contact Information: ​8135 Painter Avenue Suite 201

Whittier, CA, 90602

Phone: 562-698-6600

· ​Program information:​ Occupational Therapy aids in the development of skills that

support engagement in everyday life activities that support health, well-being, and

quality of life of people. Occupational Therapists use a variety of therapy techniques

that develop the individual's fine motor skills, visual-perceptual readiness, cognitive

abilities, and attention span.

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· ​Policy Information: ​Hours: M-F 8:00 AM - 5:00 PM. Patient must live in East Los

Angeles, South Central, West Los Angeles, San Gabriel or Pomona region. Reduced

Cost for program.

· ​ Applications/Forms​:

https://www.achievebeyondusa.com/index.php/component/rsform/form/3-refer-a-child-a

chieve-beyond-pediatric-therapy-autism-services

· ​Pamphlets/Handouts:​ See next page

Rationale:​ Through Occupational therapy, Jack will be able to work on life skills and

work on gaining his confidence. He will learn to keep his independence as long as

possible and continue to feel life's accomplishments.

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INFORMAL SUPPORT

1​st​ Family Concern/Priority: ​The Osbourne’s need a “Scientology Assist” which is

something that will help Jack, and the rest of his family to feel more comfort at this time

of struggle. An assist can be performed by a leader in the Scientology church.

​ he family has access to a Scientology Assist, but


Current Resource/Information: T

they need to figure out when to have the assist performed.

Outcome:​ T
​ he family is hoping to heal themselves spiritually by healing the mind and

not focusing on the body. They believe that Man is far more than a product of his

environment, or his genes.

Suggested Action:

· Resource Type and Name: ​Community - The Church of Scientology of Los

Angeles

· Contact Information: ​Church of Scientology Los Angeles

4810 W Sunset Blvd.

Los Angeles, CA 90027

Phone: (323) 953-3200

· Program information: ​The church's belief is that we have to heal spiritually. They

have programs for each aspect of the spiritual body and can set up sessions to attend

to help one heal the spirit.

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· Policy Information: ​Appointments can be made mon-sun from 9am-10pm. Price

not available.

· Applications/Forms: ​http://www.scientology-losangeles.org/beginning-services/

(set up a time a day to work towards spiritual healing.

· Pamphlets/Handouts: ​See next page

Rationale:​ With the religious beliefs of the family, they require for Jack to heal spiritually

along with healing physically. They need a Scientologist to help guide the spirit into

healing and progress onward.

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2​nd​ Family Concern/Priority: ​The Osbourne’s want to meet with a counselor to discuss

their own feelings and how to go about speaking with their extended family. They are

concerned how others will react but have always had strong family bonds and want to

keep that bonds strong.

​ oth sides of the family are open system families. The


Current Resource/Information: B

Osbourne’s know that the family will help to give them support when needed.

​ e hope that when the Osborne’s tell their families about Jack’s Duchenne
Outcome: W

Muscular Dystrophy that they will provide whatever support they can for Jack and his

family. The family hopes that their extended families will approach this in an open

system way. They are wanting to see a counselor to help with the emotions and any

questions that may arise.

Suggested Action:

· Resource Type and Name: ​Community, A Place Called Home, Counseling

· Contact Information: ​2830 S Central Ave,

Los Angeles, CA, 90011

Phone: 323-232-7653

· Program information: ​Counseling program provides thousands of hours of free,

comprehensive mental health services in English and Spanish. Professional therapists

use proven methods to attend to each child’s unique needs and when indicated, this

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program will provide counseling and wraparound services for the whole family. Through

individual, family and group sessions, this program provide youth and parents with the

tools to identify and address negative, destructive and counterproductive behaviors,

while promoting growth and acquisition of new coping and life skills.

· Policy Information: ​This program covers residents of the following counties: Los

Angeles County, CA.

This program helps people who are 8 to 21 years old. This program is free, and their

hours are 9AM-6PM

· Applications/Forms:

https://apch.org/wp-content/uploads/APCH-Membership-Application.pdf

· Pamphlets/Handouts: ​See next page

https://apch.org/wp-content/uploads/APCH-Membership-Application.pdf

​ his program will provide the family with the support they need. This
Rationale: T

counselor will hopefully be a safe place for the whole family to let out their feelings, and

they will be able to communicate with each other and give their opinions of what the

best decisions are to help with Jack’s disabilities.

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MATERIAL SUPPORT

1​st​ Family Concern/Priority: ​Since Sharon dislocated her shoulder, the family is in

need of a way to help lift Jack when Ozzy is away. A mechanical lift would help assist

Sharon to lift Jack by doing the lifting for her. This is going to help as Jack gets bigger,

and Sharon gets older.

​ haron knows she can’t lift since she is on a 5 pound


Current Resource/Information: S

restriction. She knows there are lifts out there that can help her lift him.

Outcome:​ T
​ he outcome for this is to make Jack more mobile. It is also going to help

Sharon as she gets older, because she may lose her strength to be able to lift Jack.

This will make transitions much easier for the whole family.

Suggested Action:

· ​Resource Type and Name​: Macs Home Lift

· ​Contact Information​: 2715 Seaboard Lane

Long Beach, CA 90805

Phone: 562-634-5962 (800) 795-6227

· ​Program information​: The Mac’s Vertical Home Lift PL-50 is designed and

engineered for everyday home use. It is easy to operate, easy to install and virtually

maintenance free. Every safety detail has been carefully designed in the Mac’s Vertical

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Home Lift including a non-slip platform, constant pressure switches, a low platform for

easy access, safety ramp and railing with all rolled edges.

· ​Policy Information​:​ Children 5 years old or younger, Youth between 6 - 18 years

old, Adults between 18 - 65 years old, Seniors 65 years old or older

· ​Applications/Forms​: ​http://macshomelift.com/macs-pl-50/

· ​Pamphlets/Handouts: ​See next page

Rationale:​ J​ ack will need a lift to help with transfers. With Sharon’s accident, she is

unable to lift him and Ozzy isn’t always home to life Jack when he needs to be lifted.

The lift will assist Sharon in getting him to and from his wheelchair, bed, and to other

places he can sit.

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2​nd​ Family Concern/Priority: J​ ack is in a need of wheelchair for the hours that he is at

school. The family will need to find someone who will be able to make adjustments to

Jack’s wheelchair as he gets older and begins to grow frequently.

Current Resource/Information:​ O
​ zzy and Sharon have a wheelchair. They just need

to know who is going to be the best resource to adjust the wheelchair as Jack continues

to grow.

Outcome:​ T
​ he outcome is going to be that adjustments of the wheelchair happen as

Jack grows older. The family is hoping that they will be able to find someone who is

available when they need them as Jack grows bigger and can no longer fit in his

wheelchair.

Suggested Action:

· ​Resource Type and Name:​ National Equipment Program - Equipment assistance

· ​Contact Information:​ 6167 Bristol Parkway,

Culver City, CA, 90230

Phone: 800-572-1717

· ​Program information:​ This program is designed for people of all ages who have

muscular dystrophy. This service is free and is there to help those with disorders related

to muscle dystrophy to live a longer and more happy life.

· ​Policy Information:​ They are open M-F 8:00AM-5:00PM. This is a free service

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· ​Applications/Forms:​ ​https://www.mda.org/services/equipment-assistance

· ​Pamphlets/Handouts:​ See next page

Rationale:​ I​ have included this resource because Jack will need a wheelchair as his

disease becomes more aware. The school is already requesting one and he is

becoming more and more dependent on those around him. This resource will give him

more independence to get around without having as much help.

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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

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Family Life Cycle

Young Children (Elementary)


During young childhood, it is important that the family finds a pediatric doctor that specializes in

Duchenne muscular dystrophy early in life. A child with MD will eventually need a wheelchair

because of weak leg muscles. Parents and caregivers might find that children, teens, and young

adults willingly accept devices and technologies that allow them to get around by themselves.

Other beneficial options include: physical therapy, medicines including deflazacort, and

psychological and nutritional counseling. Braces and splints may support and protect muscles.

Special devices can help a child sit, stand, or lie down. Surgery may also be needed to fix

scoliosis or other related problems. As your son’s muscles weaken, he may have difficulty

moving or turning over at night, and he’ll need help to sleep comfortably. Physical therapists can

recommend certain beds or mattresses to improve comfort and decrease the need for help during

sleep times. Keep in mind that restlessness or early morning headaches may be early signs of

weakening respiratory (breathing) muscles. It is important to monitor pulmonary (lung) function,

especially as children get older. Look for signs of breathing problems and discuss any concerns

with your doctor.

Families with adolescents


In the “tween” and teen years there is a continuous progression of muscle weakness. By about 12

years of age, most people with Duchenne are unable to walk and need to use a power wheelchair

on a regular basis. Immobility and weak abdominal muscles in young men with MD may result

in constipation. A diet high in fluid fiber, fresh fruits, and vegetables can improve digestion.

Weakness in the arms can make activities of daily living more difficult. Most teens, however, are

able to use of their arms and fingers through this phase, so they can generally still write and use a

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computer. You can help your child by encouraging him to play an active role in his own care,

and even leaving the room for a few minutes at each visit so he can speak to his providers on his

own. Stretch your child’s muscles and joints at least 4 to 6 times a week. Contractures (joints

becoming locked in one position) are a common problem at this stage. It is important to try to

minimize tightness in the shoulders, elbows, wrists and fingers. Ask your doctor and physical

therapist about helpful stretches, ways to keep your son standing as long as possible, and about

using orthoses. Heart problems may begin during this phase, even though no there are no

symptoms. Children may have more trouble with headaches, mental lapses, or difficulty

concentrating or trouble staying awake during the day due to breathing difficulties. These may

affect his ability at school.

Launching Children
Adults with Duchenne have more trouble using their hands and maintaining good posture.

Weakness continues during the adult phase. However, many young adults with Duchenne can

maintain some function of their fingers well into the adult stage. It is important to plan for an

adult life that maintains as many elements of independence as possible, within a supportive care

environment. Adults transition from pediatric to adult care during the adult stage. This transition

should be a planned out, multi-year process. They should play an active role in their own care.

Regular heart screening is very important. Many people with Duchenne develop diaphragm

weakness at this stage and have difficulty taking deep breaths. Adults may also have trouble

coughing. Adults typically want to be more independent but feel frustrated because they require

more care and assistance from others, such as parents. Adults with Duchenne may also be

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anxious about their health status. As muscle weakness progresses, people with Duchenne are at

risk for becoming more isolated or socially withdrawn.

Families in Late Middle Age/ Families nearing the end of life


Historically, boys with Duchenne typically die in their late 20s to early 30s due to complications

with their heart and lungs. In the last phase of Duchenne, there is usually increased difficulty in

breathing. Life-threatening heart and lung conditions are more likely. Regular heart and lung

monitoring is required, medications are often necessary, and breathing support may be needed.

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