© 2008 Canadian Hard of Hearing Association. All rights reserved. Self-advocacy for the HOH Adult Kurt D. Lynn July, 2008

© 2008 Canadian Hard of Hearing Association. All rights reserved.

Self-advocacy for the HOH AdultSelf-advocacy for the HOH Adult

Kurt D. LynnKurt D. Lynn

July, 2008July, 2008


Anybody with a hearing loss…Anybody with a hearing loss…

……understands the understands the difficulties in getting what difficulties in getting what they need.they need.


Many of us have learned Many of us have learned (the hard way)(the hard way)

That we have to be “self-That we have to be “self-advocates” if we want to make it advocates” if we want to make it in a hearing world.*in a hearing world.*

*some of us have become outright militant!

4© 2008 Canadian Hard of Hearing Association. All rights reserved.

Kurt D. Lynn

What is “Self-Advocacy”?What is “Self-Advocacy”?

Very little consensus about what it means…Very little consensus about what it means… The focus is on being in control of our own The focus is on being in control of our own

resources and how they are used or resources and how they are used or directed –without undue control from othersdirected –without undue control from others

It’s about SPEAKING UP for support from It’s about SPEAKING UP for support from others.others.

It’s a consumer characteristicIt’s a consumer characteristic


Kurt D. Lynn

Why Self-Advocacy?Why Self-Advocacy?

For most people with disabilities, self-For most people with disabilities, self-advocacy is often about confronting the advocacy is often about confronting the application of basic human rights.application of basic human rights.

For people that grow up with a disability it is For people that grow up with a disability it is often something acquired by parental often something acquired by parental example or in the school system.example or in the school system.

But for people with an invisible disability, But for people with an invisible disability, acquired later in life…acquired later in life…

……It’s a problemIt’s a problem..


Kurt D. Lynn

The self-advocacy conundrumThe self-advocacy conundrum

The concept of self-advocacy is a The concept of self-advocacy is a well-defined concept that has been well-defined concept that has been around for more than 30 years… around for more than 30 years…

yet…yet… The availability and use of self-The availability and use of self-

advocacy for and by HOH adults is advocacy for and by HOH adults is sparse.sparse.


Kurt D. Lynn

The Foundations of Self-The Foundations of Self-AdvocacyAdvocacy

Outgrowth of Ralph Nader’s consumer-Outgrowth of Ralph Nader’s consumer-focused activism in the early 60’sfocused activism in the early 60’s

In 1962 President Kennedy outline four In 1962 President Kennedy outline four basic consumer rights…basic consumer rights… The right to safetyThe right to safety The right to be informedThe right to be informed The right to chooseThe right to choose The right to be heardThe right to be heard


Kurt D. Lynn

A Brief History of Self-AdvocacyA Brief History of Self-Advocacy

In mid-60’s the notion of “independent living” In mid-60’s the notion of “independent living” emergedemerged

In late 60’s and into mid-70’s more “consumer In late 60’s and into mid-70’s more “consumer involvement in rehabilitation”involvement in rehabilitation”

In 1973 THE BC Assn. for the Mentally Handicapped In 1973 THE BC Assn. for the Mentally Handicapped (sic) sponsor an institutional conference. (sic) sponsor an institutional conference.

In1974 institutionalized people that wanted to live In1974 institutionalized people that wanted to live independently coalesced.independently coalesced.

““Power to the People” morphed into “People First” Power to the People” morphed into “People First” and emerged in Canada in early 1979and emerged in Canada in early 1979


Kurt D. Lynn

Here we are now in 2008…Here we are now in 2008…

10% of the population has some form of 10% of the population has some form of hearing loss.hearing loss.

Hearing loss continues to expandHearing loss continues to expand Aging means a larger percentage of the Aging means a larger percentage of the

population experiences hearing loss as population experiences hearing loss as part of their disability.part of their disability.

Demographics of aging and hearing loss Demographics of aging and hearing loss open new dimension of self-advocacyopen new dimension of self-advocacy


Table 7 Most commonly used assistive device by type of disability for adults, Canada, 2006

Aid TypeMost common assistive device

%

Source: Statistics Canada, Participation and Activity Limitation Survey, 2006.

Hearing Hearing aids 79.7

Seeing Magnifiers 91.3

CommunicationComputer or keyboard devices

53.3E

Mobility Canes or walking sticks 71.6

AgilityGrasping tools or reach extenders

54.6

Pain Hot or cold aids 88.0

Learning Home computers 83.2

Other needs Respiratory aids1 24.5


Table 8Most common unmet need for assistive devices by type of disability for adults, Canada, 2006

Aid type Most common assistive device %

Source: Statistics Canada, Participation and Activity Limitation Survey, 2006.

Hearing Closed caption TV or decoder 72.0

Seeing Large print reading materials 29.7

Communication Computer or keyboard device 26.6E

Mobility Lifts or lift type devices 23.6

Agility Hand or arm brace 39.4

Pain Comfort aids1 29.7

Learning Specialised telephone 26.5

Other needsOther aids 79.4

Bath, shower, or toilet aids 13.7


Kurt D. Lynn

SummarySummary

Self-advocacy has a long historySelf-advocacy has a long history Hearing loss remains the #1 disability both in absolute Hearing loss remains the #1 disability both in absolute

numbers and in growth ratenumbers and in growth rate Yet HOH persons are notoriously poor self-advocates…Yet HOH persons are notoriously poor self-advocates…

VanityVanity StigmaStigma

Retail and institutional audiologists or other caregivers Retail and institutional audiologists or other caregivers don’t seem to consistently offer guidance.don’t seem to consistently offer guidance.

What about adult HOH persons?What about adult HOH persons?


Kurt D. Lynn

Why CHHA is picking this up?Why CHHA is picking this up?

We are a consumer organizationWe are a consumer organization


Kurt D. Lynn

What needs to be taught?What needs to be taught?

Fundamental self-advocacy components:Fundamental self-advocacy components: Know our own needsKnow our own needs Know out own remediationKnow out own remediation

DevicesDevices Coping strategiesCoping strategies

Know our own responsibilitiesKnow our own responsibilities Know our own rightsKnow our own rights Know what to do if our rights are deniedKnow what to do if our rights are denied

Must have a component for presenting en masseMust have a component for presenting en masse Must be credibleMust be credible Must be licensable or able to be private labeledMust be licensable or able to be private labeled


Kurt D. Lynn

Why isn’t it more prevalent?Why isn’t it more prevalent?

Inconsistent materialsInconsistent materials Low perceived added-valueLow perceived added-value Many points of distribution to be Many points of distribution to be

covered.covered.


Channels of self-advocacy Channels of self-advocacy instructioninstruction

HOH Adult

Caregiver or family member

Provider

Self-Advocac

y“Know How”

Technology

Provider(if any)

GO & NGO


Kurt D. Lynn

Specification…Specification…

Must be simpleMust be simple Must be smallMust be small Must address the HOH adult person Must address the HOH adult person Must be plain-language (Flesch Reading 75+)Must be plain-language (Flesch Reading 75+) Must be inexpensiveMust be inexpensive Must have a component for Must have a component for

caregivers/providers of the HOH personcaregivers/providers of the HOH person Information is not instruction; there must be Information is not instruction; there must be

a practicum component.a practicum component. Must be credible.Must be credible.


Kurt D. Lynn

What materials are necessary?What materials are necessary?

Provider materialsProvider materials Consumer presentationConsumer presentation Consumer bookletsConsumer booklets Provider instruction letterProvider instruction letter

Consumer materialsConsumer materials 16-page information pamphlet16-page information pamphlet Accessible web versionAccessible web version Downloadable .pdfDownloadable .pdf


Live Better.Live Better.Stay Connected.Stay Connected.Make The Most of What You Can Make The Most of What You Can Hear.Hear.

An Information Program An Information Program

About Self-AdvocacyAbout Self-Advocacy

For the Hard-of-Hearing AdultFor the Hard-of-Hearing Adult


Kurt D. Lynn

Today…Today…

Focus is on what you need to know to Focus is on what you need to know to manage with a hearing lossmanage with a hearing loss

How to copeHow to cope How to take control of your hearing How to take control of your hearing

loss choices.loss choices. How to live better, stay connected, & How to live better, stay connected, &

make the most of what you can hear.make the most of what you can hear.


Kurt D. Lynn

When it’s hard to hear…When it’s hard to hear…

Adults often begin to feel…Adults often begin to feel… IsolatedIsolated Wanting to withdraw from social contactWanting to withdraw from social contact Frustrated!Frustrated! AnxiousAnxious EmbarrassedEmbarrassed HumiliatedHumiliated LonelyLonely DepressedDepressed

Hearing loss is people loss!Hearing loss is people loss!


Kurt D. Lynn

To Cope… Knowledge is Power!To Cope… Knowledge is Power!

You must play an active role You must play an active role No one else can do it for youNo one else can do it for you Learn about your hearing situation.Learn about your hearing situation.

Your hearing problemYour hearing problem Your needsYour needs Your responsibilitiesYour responsibilities Your devices and equipmentYour devices and equipment Ways to copeWays to cope Your rightsYour rights

You must become a “self-advocate”.You must become a “self-advocate”.


Kurt D. Lynn

Know Your Hearing ProblemKnow Your Hearing Problem

Why type of hearing loss do you have?Why type of hearing loss do you have? How severe is it?How severe is it? Is one ear better than the other is?Is one ear better than the other is? What caused the loss?What caused the loss? What can you expect in the future?What can you expect in the future? How will your loss affect your ability to How will your loss affect your ability to

understand others?understand others? How beneficial will hearing aids & assistive How beneficial will hearing aids & assistive

devices be?devices be?


Kurt D. Lynn

Know Your Own NeedsKnow Your Own Needs

Different levels of loss mean different needsDifferent levels of loss mean different needs Are hearing aids appropriate for you? What type Are hearing aids appropriate for you? What type

would you need?would you need? What other assistive devices can ensure your What other assistive devices can ensure your

safety at home or when travellingsafety at home or when travelling What type of care will you need? How often?What type of care will you need? How often? What can you expect from your care provider?What can you expect from your care provider? What type of environment will you need?What type of environment will you need? How can you safeguard what hearing you might How can you safeguard what hearing you might

still have?still have?


Kurt D. Lynn

Know YOUR responsibilitiesKnow YOUR responsibilities

YOU are responsible for managing YOU are responsible for managing your hearing loss.your hearing loss.

YOU must be a self-advocate.YOU must be a self-advocate. Follow 5 self-advocacy steps…Follow 5 self-advocacy steps…

1.1. Plan your situationPlan your situation2.2. Evaluate environment/situationEvaluate environment/situation3.3. Self identifySelf identify4.4. Identify your needsIdentify your needs5.5. Ask for what you wantAsk for what you want


Know your equipmentKnow your equipment

What equipment What equipment do you need?do you need? Hearing AidsHearing Aids Assistive DevicesAssistive Devices BatteriesBatteries AccessoriesAccessories

Why do you need it?Why do you need it? Where was it purchased?Where was it purchased? Warranty & replacement Warranty & replacement

policy?policy? How do you operate it?How do you operate it? Where are the Where are the

instructions?instructions? Have you read them?Have you read them? How do I care & clean it?How do I care & clean it? How do I get How do I get

replacements or repairs?replacements or repairs?


Kurt D. Lynn

Know your rightsKnow your rights

The Right to control what happens to your body The Right to control what happens to your body The Right to equal protection and equal benefit of the law The Right to equal protection and equal benefit of the law The Right of choice The Right of choice The Right to informed consent (to know your choices) The Right to informed consent (to know your choices) The Right to have things explained to you The Right to have things explained to you The Right to be heard The Right to be heard The Right to see a lawyer of other advisor The Right to see a lawyer of other advisor The Right to proper medical & hearing health care The Right to proper medical & hearing health care The Right to be educated The Right to be educated The Right to apply for a job and be taken seriously The Right to apply for a job and be taken seriously The Right to safe working and living conditionsThe Right to safe working and living conditions


Kurt D. Lynn

Know how to use self-advocacy to Know how to use self-advocacy to copecope

Various real-life examples…Various real-life examples… The noisy restaurantThe noisy restaurant The important business meetingThe important business meeting Your new cell phoneYour new cell phone Travelling and in a hotelTravelling and in a hotel

DiscussionDiscussion Apply the 5 Self-Advocacy Steps!Apply the 5 Self-Advocacy Steps!


Kurt D. Lynn

Scenario 1 – the noisy restaurantScenario 1 – the noisy restaurant

You have a moderate hearing loss. You have a moderate hearing loss. You wear hearing aids.You wear hearing aids. You and a friend have just entered You and a friend have just entered

a noisy restaurant for lunch.a noisy restaurant for lunch. What do you do?What do you do? How do you apply the 5-steps?How do you apply the 5-steps?


Kurt D. Lynn

Scenario 2 – the business Scenario 2 – the business meetingmeeting

You are deaf in your left ear.You are deaf in your left ear. You and your coworkers have just You and your coworkers have just

convened for a staff meeting convened for a staff meeting around a large conference table.around a large conference table.

Where do you sit?Where do you sit? How do you apply the 5-steps?How do you apply the 5-steps?


Kurt D. Lynn

Scenario 3 – on the telephoneScenario 3 – on the telephone

You have a mild hearing loss in both You have a mild hearing loss in both ears. ears.

With some callers it is difficult to With some callers it is difficult to understand them.understand them.

You are walking on the street, 5 minutes You are walking on the street, 5 minutes from your office when you get a call…from your office when you get a call…

What do you do?What do you do? How do you apply the 5-steps?How do you apply the 5-steps?


Kurt D. Lynn

Scenario 4 – in a hotelScenario 4 – in a hotel

You have a severe hearing lossYou have a severe hearing loss You wear hearing aidsYou wear hearing aids You remove your hearing aids when you You remove your hearing aids when you

sleepsleep You are making a reservation for a You are making a reservation for a

hotel…hotel… What do you do?What do you do? How do you apply the 5-steps?How do you apply the 5-steps?


Other Scenarios?Other Scenarios?


Other Questions?Other Questions?


Thank you!Thank you!


Kurt D. Lynn

The Informational Booklet…The Informational Booklet…

Same title (brand)Same title (brand) 16 pages16 pages Echo’s the presentation.Echo’s the presentation. Provides phone & web informationProvides phone & web information


Kurt D. Lynn

What’s next?What’s next?

Solicit review, feedback & Solicit review, feedback & endorsement (beginning right endorsement (beginning right here)here)

Prepare final version of materials Prepare final version of materials with full graphicswith full graphics

Publish the materialsPublish the materials Begin seeking broad distribution.Begin seeking broad distribution.


Questions?Questions?

Kurt D. LynnKurt D. Lynn

[email protected]@chha.on.ca

Documents

© 2008 Canadian Hard of Hearing Association. All rights reserved. Self-advocacy for the HOH Adult Kurt D. Lynn July, 2008