The Amputee Coalitions National Limb Loss Resource Center Meet ing - - PowerPoint PPT Presentation

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The Amputee Coalitions National Limb Loss Resource Center Meet ing - - PowerPoint PPT Presentation

Sep 02, 2022 250 likes •803 views

The Amputee Coalitions National Limb Loss Resource Center Meet ing t he Informat ion and Resource Needs of t he Limb Loss Communit y amput ee-coalit ion.org 888-267-5669 Disclaimer: This project was supported, in part, by grant number

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The Amputee Coalition’s National Limb Loss Resource Center

Meet ing t he Informat ion and Resource Needs of t he Limb Loss Communit y

amput ee-coalit ion.org 888-267-5669

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SLIDE 2

Disclaimer: This project was supported, in part, by grant number 90LL0002-01-00, from the Administration for Community Living, U.S. Department of Health and Human Services, Washington, D.C. 20201. Grantees undertaking projects under government sponsorship are encouraged to express freely their findings and conclusions. Points of view or opinions do not, therefore, necessarily represent official Administration for Community Living policy.

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amput ee-coalit ion.org 888/ 267-5669

Our Mission

To reach out to and empower those affected by limb loss to achieve their full potential through education, support, and advocacy, and to promote limb loss prevention.

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SLIDE 4

amput ee-coalit ion.org 888/ 267-5669

Organizat ional Overview

  • The leading donor-supported, national

non-profit organization serving the limb loss community

  • 30th Anniversary
  • Headquartered in Manassas, V

A with a branch office in Knoxville, TN

  • 19 staff members
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SLIDE 5

amput ee-coalit ion.org 888/ 267-5669

Organizat ional Reach

  • More than 300 support groups in our

network

  • Over 1,000 Certified Peer Visitors across

the country

  • 65,000+ friends in database
  • 100,000+ Facebook community
  • 800,000+ Web site visitors
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Limb Loss Communit y

  • 2.1 million persons with limb loss

1% 18% 38% 21% 22% Under 18 18 - 44 45 - 64 65 - 74 75+

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SLIDE 7

Amput at ion Levels

65% 35%

Level of Limb Loss

Lower Limb Upper Limb

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SLIDE 8

Causes of Amput at ion

5% 67% 27% 1% Trauma Dyvsvascular Diabet es Other

2012 - 131,510 amputations performed in US

(S

  • urce: Healt hcare Cost and Ut ilizat ion Proj ect [HCUP] Nat ionwide Inpat ient S

ample [NIS ], 2012.)

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SLIDE 9

Adapt ing t o Limb Loss

  • Variety of assistive technologies
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SLIDE 10

Living wit h Limb Loss

  • Range of functional abilities
  • Other health conditions/ disabilities:

– Diabet es – Depression – Traumat ic Brain Inj ury – Post -Traumat ic S

t ress

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SLIDE 11

Availability of Patient Education Materials

  • Prior to Amputation

– 53%

  • little to no

information about prosthetics

– 59%

  • f no source of

information about prosthetics

S

  • urce: S

eaman, JP . 2010. S urvey of Individuals Wearing Lower Limb Prost heses. Journal of Prost het ics and Ort hot ics. Vol 22. No. 4.

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Informat ion Needs of PWLL

  • Questions
  • Fears
  • Concerns

Topics

  • Method
  • Content
  • Other

Delivery

  • How to deliver
  • When to deliver
  • How much

Approach

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SLIDE 13

Information Topics

  • Wound Management
  • Pain Experiences
  • Phantom Limb S

ensation

  • Rehab Expectations
  • Prosthetics/ Assistive Technology
  • Financial
  • S

upport

  • Recovery Process
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SLIDE 14

Delivering Information

  • Hearing/ vision loss, co-morbidit ies
  • Y
  • unger generat ion

Age

  • Impair abilit y t o absorb informat ion

Pain/ Medication

  • Fear, anxiet y, shock
  • Change percept ion of informat ion

Emotions

  • Dist ract ions
  • Friendly and support ive

Environment

  • Avoid t echnical t erms

Education

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SLIDE 15

Pat ient Educat ion Approaches

Timing

  • Pre-operative
  • Post-operative

Mode

  • Verbal
  • Written
  • Video

Amount

  • Too much
  • Too little
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SLIDE 16

Programs and S ervices

  • Peer S

upport Network

  • S

elf-management programs

  • Educational Events
  • Y
  • uth Camp
  • Patient Education

publications

  • Information and

Referral Center

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SLIDE 17

amput ee-coalit ion.org 888/ 267-5669

Cert ified Peer Visit or Program

  • First peer visitor training held in 1993
  • Now over 1,000 certified peer visitors and

growing!

  • Extensive matching process
  • Can request a peer visit online or by

phone

  • Non-biased and non-affiliated
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amput ee-coalit ion.org 888-267-5669

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Y

  • ut h Camp
  • Free
  • Traditional summer camp
  • Ages 10 – 17
  • Clarksville, OH
  • ~130 campers
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SLIDE 20
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amput ee-coalit ion.org 888/ 267-5669

Limb Loss Resource Cent er

  • S

erves thousands of individuals each year

  • Provide free educational resources
  • Call Center

– Monday-Friday 8:00am-5:00pm – Email, Web, and Phone Inquiries

  • Website

– “ Library” of materials available

  • Publications
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SLIDE 22

S ample Resources

  • Customized Information Packets

– S

pecific to patient’s needs

  • E.g., Phant om Pain, Wound Care, S

hoes

  • Local Resources

– Home modifications

amput ee-coalit ion.org 888-267-5669

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SLIDE 23

amput ee-coalit ion.org 888/ 267-5669

Limb Loss Resource Cent er

0% 10% 20% 30% 40% 50% 60% 70% 2012-2013 2013-2014 2014-2015

48.9% 64.3% 67.0% 34.0% 14.3% 19.6% 8.5% 10.7% 6.2% 7.2%

Percent Grant Year

Overall satisfaction with materials received, 2012- 2015

Very satisfied Somewhat satisfied Somewhat not satisfied Not satisfied 0% 10% 20% 30% 40% 50% 60% 70% 2012-2013 2013-2014 2014-2015

54.3% 61.0% 65.0% 28.3% 18.6% 22.0% 15.2% 8.5% 3.0% 2.2% 11.9% 10.0%

Percent Grant Year

Usefulness of materials received, 2012-2015

Very useful Somewhat useful Somewhat not useful Not at all useful

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amput ee-coalit ion.org 888/ 267-5669

Publicat ions

  • InMotion
  • First S

tep/ Premier Paso

  • Insurance Coverage and Reimbursement

Guide

  • Brochure S

eries

– First S

tep

– Pain Management

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amput ee-coalit ion.org 888/ 267-5669

Benefit s of Publicat ions

  • Non-biased and patient centered

approach

  • Reviewed by clinicians and consumers
  • Free
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amput ee-coalit ion.org 888/ 267-5669

Benefit s of inMot ion

0% 10% 20% 30% 40% 50% 60% 70% 2012-2013 2013-2014 2014-2015

44.7% 49.5% 64.2% 49.4% 46.6% 32.8% 5.9% 2.9% 2.2% 0.0% 1.0% 0.0%

Percent Grant Year

Usefulness of inMotion articles, 2012-2015

Very useful Somewhat useful Somewhat not useful Not at all useful 0% 20% 40% 60% 80% 2012-2013 2013-2014 2014-2015

50.0% 63.0% 71.2% 46.3% 33.0% 27.5% 3.8% 0.9% 0.0% 2.0% 0.5%

Percent Grant Year

Overall satisfaction with content of inMotion, 2012-2015

Very satisfied Somewhat satisfied Somewhat not satisfied Not at all satisfied

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amput ee-coalit ion.org 888/ 267-5669

Benefit s of First S t ep

0% 20% 40% 60% 80% 100% 2012-2013 2013-2014 2014-2015

78.9% 78.0% 87.5% 21.1% 19.5% 9.7% 0.0% 0.0% 2.4% 1.4%

Percent Grant Year

Overall satisfaction with information in First Step, 2012- 2015

Very satisfied Somewhat satisfied Somewhat not satisfied Not satisfied 0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 2012-2013 2013-2014 2014-2015

85.7% 80.5% 87.3% 14.3% 17.1% 12.7% 0.0% 2.4% 0.0% 0.0%

Percent Grant Year

Usefulness of information in First Step, 2012-2015

Very useful Somewhat useful Somewhat not useful Not at all useful

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amput ee-coalit ion.org 888/ 267-5669

Y

  • ur New Journey Folder
  • Evidenced-based
  • Informat ion New Amput ees need
  • Consumer and Clinician Reviewed
  • Not Overwhelming
  • Available in Spanish
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amput ee-coalit ion.org 888/ 267-5669

Y

  • ur New Journey Packet
  • Folder
  • First S

tep

  • inMot ion
  • Amputation specific
  • Brochures
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amput ee-coalit ion.org 888/ 267-5669

Pat ient Educat ion Booklet

  • Amputation/ Topic specific resource
  • Undergoing complete redesign
  • Will be available 2016

– Below Knee – Above Knee – Upper Limb – Hemipelvectomy/ Hip Disarticulation – Caregiver – Pediatric Population

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Amputee Coalition Resource Center

The “ Gat eway” of t he Amput ee Coalit ion

amput ee-coalit ion.org 888-267-5669

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Who We Are/ What We Do

  • We serve the limb loss community, their families, their friends,

caregivers, hospitals, rehabilitation centers, social service workers and the public as a whole.

  • Anyone is welcome to contact the Resource Center for assistance.
  • Our resources and materials are provided free of charge to

individuals.

amput ee-coalit ion.org 888-267-5669

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Cont act us

  • Inquiries come into the Resource Center

in a variety of ways.

  • Via our toll-free number 1-888-267-5669
  • Via our website www.amputee-

coalition.org

  • Via the postal mail and the occasional

drop-by at either of our offices.

  • Office hours are 8am-5pm (ES

T Mon-Fri).

amput ee-coalit ion.org 888-267-5669

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Who Cont act s Us?

–Anyone is welcome to contact us. –We receive inquiries, questions

and comments from all 50 states as well as internationally.

– Limited support for international

requests.

amput ee-coalit ion.org 888-267-5669

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By The Numbers

– Each inquiry or question the Resource Center

receives becomes a case.

– Each case is researched, fulfilled and

documented in our database.

– In 2015, we opened 4,361 cases (an average

  • f 365 a month), and served 6,005

individuals.

– S

  • far in 2016 we are averaging 460 cases a

month, serving 491 individuals per month.

amput ee-coalit ion.org 888-267-5669

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S ame, but different

  • The Resource Center shares some

similarities with 211 centers and CIL’s.

  • We field calls from the public, but we are

not a traditional “ call center” .

  • S

mall staff (3), no call queue system, not

  • n the phone constantly (usually).
  • Maj ority of our time is spent researching

cases.

amput ee-coalit ion.org 888-267-5669

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However… .

  • When someone calls, we stop everything

to focus on the caller and their needs.

  • Calls can be as brief or as lengthy as the

caller’s need dictate.

  • S

hortest call (30 seconds) Longest 1 hour, 45 minutes.

amput ee-coalit ion.org 888-267-5669

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Ot her differences

  • Create resources

– First S

tep

– Y

  • ur New Journey

– In Motion magazine – Insurance/ Reimbursement Guide – Amputation Level S

pecific Information

amput ee-coalit ion.org 888-267-5669

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Working wit h you

  • We refer our clients everyday to CIL’s,

211 centers and other specialized information centers.

  • Our clients very often are looking for

local and specific resources.

  • As we are a national organization, we

rely heavily on you to connect our clients to programs and services in their community.

amput ee-coalit ion.org 888-267-5669

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Common questions

  • Two overriding popular questions
  • New Amputee Information
  • Funding resources

amput ee-coalit ion.org 888-267-5669

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New Amput ee Informat ion

  • Amputation may have been very recent.
  • “ I’ m not even sure why I’ m calling.”
  • “ Where do I go from here?

”

  • Truly a new j ourney
  • Finding us via a google search.

amput ee-coalit ion.org 888-267-5669

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Funding

  • Assistance with the co-pay of a prosthetic

device.

  • Can and do cost in the thousands of

dollars.

  • Other funding requests, home and vehicle

modification.

  • Help with social services and everyday

bills.

amput ee-coalit ion.org 888-267-5669

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SLIDE 43

“ Difficult calls”

  • We have our share of people who are less

than pleased with our services and/ or

  • rganization.
  • Belligerent, angry at the world.
  • Difficult calls can take other forms…

..

amput ee-coalit ion.org 888-267-5669

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What do we say?

  • Victim of an automobile or motorcycle
  • accident. They are at the hospital now.

No memory of the accident and they will soon come out from anesthesia. They had a below knee amputation. How are we going to tell them? What do we say?

amput ee-coalit ion.org 888-267-5669

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What do I do now?

  • A person who has worked for 40 years in

the same j ob has lost her leg due to complications due to diabetes. S he is unable to return to work. How can she pay her mortgage? What does she do now?

amput ee-coalit ion.org 888-267-5669

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What about Grandpa?

  • A parent calls and ask how to tell their

five year old son or daughter that Grandpa no longer has his arm?

amput ee-coalit ion.org 888-267-5669

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Now what ?

  • A man had both legs removed due to a

vascular condition. He tells us he was sent home with a wheelchair and our phone number. His nearest family member is 200 miles away. Now what?

amput ee-coalit ion.org 888-267-5669

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SLIDE 48

Not uncommon, but st ill unique

  • Over 2 million people live with limb loss.
  • More than 28 million people are at risk.
  • 185,000 amputations a year in the U.S

.

  • More than 500 a day.

amput ee-coalit ion.org 888-267-5669

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SLIDE 49

Numbers don’ t mat t er

  • Incredibly personal and life-changing for

the individual.

  • No right answer, no time frames on

recovery or rehabilitation.

  • Courage

amput ee-coalit ion.org 888-267-5669

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SLIDE 50

“ Those calls”

  • ‘ S
  • , how long do I have to live?

”

  • What would Benj amin Franklin do ?

”

  • Medical/ Legal Advice

amput ee-coalit ion.org 888-267-5669

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SLIDE 51

Words mat t er

  • What do I call you?
  • Disabled or no?
  • Courage (reprise)

amput ee-coalit ion.org 888-267-5669

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SLIDE 52

Find us

  • 1-888-267-5669
  • amputee-coaltion.org
  • Take a card

amput ee-coalit ion.org 888-267-5669

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SLIDE 53

Thank you!