https://learn.extension.org/events/2678

This material is based upon work supported by the National Institute of Food and Agriculture, U.S. Department of Agriculture, and the Office of Family

Readiness Policy, U.S. Department of Defense under Award Numbers 2014-48770-22587 and 2015-48770-24368.

Communicating Family Needs Through Advocacy

Connecting military family service providers

and Cooperative Extension professionals to research

and to each other through engaging online learning opportunities

www.extension.org/militaryfamilies

MFLN Intro

2Sign up for webinar email notifications at www.extension.org/62831

3

Today’s Presenters

Meghan Burke, Ph.D.

• Assistant Professor of Special Education at

University of Illinois

• Developed the Volunteer Advocacy Project

• Is adapting the VAP for parents who want to

learn how to navigate the adult service delivery

system

• Research interests include parent advocacy,

families of individuals with intellectual and

developmental disabilities, and disability

policies

Bari Sobelson, MS, LMFT

•Social Media and Programming Coordination

Specialist for MFLN Family Development

•Licensed Marriage and Family Therapist

•Served as Early Intervention Specialist and

Service Coordinator in Georgia’s EI Babies Can’t

Wait

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Case scenario #1

• Julia will be 3 years old in a couple of months.

• She loves playing with her baby dolls, dressing up,

watching Doc McStuffins and going to the park with

her friends.

• Julia was diagnosed with Cerebral Palsy this time last

year and has been receiving physical therapy and

speech therapy through Early Intervention.

• She has been to the local school system for testing

already and will have her eligibility meeting next week.

Her parents are overwhelmed and confused and feel

ill-prepared for their meeting and Julia’s future.

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Case scenario #2

• Thomas is 8 years old

• He enjoys playing soccer and is a green belt in karate,

and his favorite foods are pizza and ice cream.

• Thomas was diagnosed with Generalized Anxiety

Disorder at the age of 5.

• Thomas’ father is in the military and their family has

experienced numerous deployments since his birth.

• Since his initial diagnosis, his parents have

participated in numerous meetings with various school

systems and outside agencies and still feel that

Thomas’ needs are not being met. They are at a loss

on where to go from here.

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How would you define advocacy?

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What is advocacy?

The act or process of supporting a cause or

proposal; the act or process of advocating

something. (Merriam-Webster)

Special Education and Mental Health Advocacy:

Acting on behalf of an individual to ensure that his/her needs are met

Raising awareness of certain conditions, diagnoses, issues, etc.

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Advocacy takes many forms

Rely on professionals or one’s self

Can occur in a variety of service delivery systems

Can be formal and informal

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Informal advocacy

Learning your rights

Conversations

People first language

Networking with others

Letter writing

Documentation

Speaking up during meetings

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Formal advocacy

Hiring an advocate or attorney

Affecting legislationhttp://ahs.uic.edu/cl/familyclinics/advocacy/

Getting publicity or media coverage

Utilizing procedural safeguards

Providing educational opportunities for the public

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Three themes of advocacy

1. Advocacy enhances coping

2. Advocacy involves struggle

3. Advocacy causes stress

(Wang, et al., 2004)

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What are some possible barriers

to advocacy?

Special education? Mental

health?

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Implementation problems in policies

Lacking funding

Waiting lists

Different eligibility schemes

Lag time in proving eligibility

Constantly evolving policies

Difficult to navigate systems

Insufficient implementation of policies

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Other barriers…

Historically, family members have been viewed as peripheral to

service delivery systems

Policies do not provide clear instruction for advocacy

Significant power differential between professional and families

Afraid to jeopardize relationships

Poorly scheduled meetings

High-reading level materials

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And the list goes on…

Lack of transportation or childcare

Communication and language barriers

History of poor relationships with schools and other agencies

Cultural differences in help-seeking behavior

Perceptions about professionals as experts whose opinions cannot be opposed

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And on…

Who has the time?

Who has the money?

Who can emotionally distance themselves from their

child?

(Cunconaan-Lahr & Brotherson, 1996)

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Strategies to successfully advocate:

Steps to advocacy

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Effective advocacy is…

1. Identifying the problem

2. Identifying the responsible agency

3. Identifying obstacles and solutions

4. Creating a plan of action

Developed by the Family Resource Center on

Disabilities, Chicago, IL

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1. Identifying the problem

What is the problem?

Is it individual or systemic?

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2. Identifying the responsible agency

Who owns the problem?

Who is responsible for providing the needed

services to address the problem?

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2. Identifying the responsible agency (cont.)

Separate the problem from the people Don’t attack the people at the table; instead, focus on the issue at

hand

Put yourself in their shoes and consider the reasons behind their opinions Acknowledge that you heard their opinions

• Can I ask you a few questions about that?

• Let me check to see if I understand what you are saying.

• I understand what you are saying.

• I understand your concerns.

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3. Identifying obstacles and possible solutions

What are some possible legal and creative solutions to the

problem?

Who/what stands in the way of these solutions?

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3. Identifying obstacles and possible solutions, cont.

Have multiple solutions to choose from

Actively involve everyone in the solutions to increase ownership

Show how the solutions stem from others’ input

Look at others’ interests:

Are they legitimate? (if so, address them)

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4. Creating a plan of action

Information gathering:

Laws, rules, regulations, policies

Supportive data and research

Pertinent records

Identify potential agencies, parents, and support

groups who are having similar problems

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Strategies to successfully advocate:

Communication

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Listen first

Listen to what the provider/professional is saying

first

Make sure you understand what they are saying

Get what they are saying in writing

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Most professional

fields are full of

acronyms

Most parents are not

familiar with these

acronyms

Listening

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ALWAYS ask questions!

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Example Questions

“Can you explain that in layman’s terms?”

“Can you give an example of what you mean?”

“Can you give me a resource or referral to better

understand the service you are recommending?”

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Positive reinforcement

http://bit.ly/2a462LW

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Reinforce positive statements

Provide food

Use specific praise

Write a thank you card (cc to the person’s boss/employer)

Express your gratitude verbally

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Perhaps most importantly…

DOCUMENT

DOCUMENT

DOCUMENT

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Documentation

Use the “cc”(carbon copy) to other agencies

Give a deadline for a response

Send copies to appropriate officials when necessary

Hand deliver with a signature or send return/receipt

requested

Follow up phone and in-person visits

Screenshot documents online

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Documentation: The fluffy but meaningful letter

Dear_____,

Thank you for meeting with me on ____. I would like to follow up to

ensure that I understood what was discussed. You contacted me on ___

to discuss ___. On ____ date, we discussed _____. We came to the

following conclusion ____.

Thank you again for speaking with me. I am looking forward to working

with you on this. If I misunderstood any of this, please let me know within

five days (by____), otherwise I am going to consider this to be true.

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Documentation for eligibility

When you provide documents for eligibility or re-evaluation of eligibility, document that the provider/agency received the documents

Email:

Require the respondent to check that he/she received the e-mail

In-person drop-off:

Have the respondent sign a piece of paper indicating that they received the paperwork that day

Fax:

Require a fax delivery confirmation

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Documentation of phone calls

You should call to check on the status of your application and/or

services

You should also document your calls to the provider/agency

Phone log

You should ALWAYS leave a polite message

Date and

time you

called

Who you

called

Reason for

your call

Response of

the person

you called

Other

Information

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Strategies to successfully advocate:

Parent Input Statements

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Parent Input Statements

Identify the issues that you want to discuss at the next

meeting

Provide the supporting evidence for each topic

Relate it back to relevant law, regulations, and rules

Make a case as to why this is necessary for your child

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Outline of parent input statement

Begin with thanking relevant stakeholders at meeting

Discuss your concerns about your child

Present at least two options that you see could resolve

your concerns

End with positive statement about collaboration

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Draft Parent Input Statement

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What do you think is good

about Parent Input Statements?

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Strategies to successfully advocate:

Attending meetings

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At the beginning of the meeting…

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Bring someone to your meeting…

Parents should always have someone else (e.g. spouse, advocate, friend, etc.) attend the meeting with them

This person should take notes at the meeting

This person should monitor your emotions and signal the need for a break (if needed)

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Before the meeting

Ask for a copy of all of the paperwork that will be

discussed in the meetings

Evaluations

Progress reports

Notes from professionals

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Before the meeting

Ask for the agenda of the meeting

Determine the length of the meeting

Ask who will be at the meeting

Make sure the people you want to be at the meeting are

invited

Examine the list of attendees - what does the list tell you

about the agenda of the meeting?

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Prepare before the meeting

Think about:

Hot button issues for you

How you will respond to certain comments/questions

What could be discussed at the meeting

What you want to be discussed at the meeting

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At the actual meeting

Begin by focusing on what is working and the

positives of the individual

Do not bring up the past

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At the actual meeting

Take breaks at the meeting when emotions rise

Sit in a circle

Treat everyone with respect

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After the meeting

Send a thank you note

Follow up about the meeting in writing

Make sure you document what was discussed

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Sample letter

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Either during or after the meeting

Discuss the logistics of addressing issues in writing

Who will implement the service?

Where will the service be implemented?

What will occur during the service?

Who will be held accountable?

Who should I call if there is a problem?

When will the service be implemented?

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Resources for advocacy

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Resources

Agency Purpose Contact Information

Parent Training and Information

Center

To educate and empower

parents of children with

disabilities to advocate for

school services

www.parentcenterhub.org/find-your-center/

Protection & Advocacy Agency To provide legal advocacy to

parents of children with

disabilities

www.ndrn.org/about/paacap-network.html

National Alliance on Mental

Illness (NAMI)

To offer support to listen to

individuals (toll-free hotline) and

to educate and advocate

https://www.nami.org/

University Centers for

Excellence in Developmental

Disabilities (UCEDDs)

To provide technical assistance,

information, research, and

service

www.aucd.org/template/page.cfm?id=24

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Resources

Agency Purpose Contact Information

Mental Health America To address the needs of those

living with mental illness and

promote the mental health of all

Americans

www.mentalhealthamerica.net

Treatment Advocacy Center To eliminate barriers to the

timely and effective treatment

of severe mental illness

www.treatmentadvocacycenter.org

National Federation of Families

for Children’s Mental Health

To provide advocacy at the

national level for the rights of

children and youth with

emotional, behavioral and

mental health challenges and

their families.

www.ffcmh.org

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What is one significant thing

you learned today?

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Join the Conversation Online!

MFLN Family Development

MFLN Family Development @MFLNFD

To subscribe to our MFLN Family Development newsletter send an email to:

MFLNfamilydevelopment@gmail.com with the Subject: Subscribe

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59

MFLN Intro

We invite MFLN Service Provider Partners

to our private LinkedIn Group!

https://www.linkedin.com/groups/8409844

DoD

Branch Services

Reserve

Guard

Cooperative

Extension

• For this webinar, we are offering Early Intervention, NASW, and Georgia Marriage and

Family Therapy CE credits.

• Early Intervention CE credits are available to participants in Illinois, Georgia, Kansas,

Kentucky, Ohio (EISC & EI CE credit), North Carolina, Tennessee, Texas, and Virginia.

• Webinar participants who want to receive a certificate of continuing education (or just want

proof of participation in the training) need to take this evaluation and post-

test:https://vte.co1.qualtrics.com/SE/?SID=SV_5u5bN2AULY3ejtz

• You must submit your certificate of completion and any other materials required to your

state/agency in order to receive credit.

• CE certificates of completion will be automatically emailed to participants upon completion

of the evaluation & post-test.

• Questions/concerns regarding EI CE credit certificates?

• Contact MFLNFDEarlyIntervention@gmail.com

• Questions/concerns regarding NASW CE credit certificates

• Contact MFLNFamilyDevelopment@gmail.com

CE Credit Information

61

VLE 2: Opening Doors with Families Using

Routines-Based Interview

• Date: Thursday September 8

• Time: 11:00am ET

• Location: https://learn.extension.org/events/2651

For more information on MFLN Family Development go to:

https://blogs.extension.org/militaryfamilies/family-development

MFLN Family Development

Upcoming Event

62

www.extension.org/62581

63This material is based upon work supported by the National Institute of Food and Agriculture, U.S. Department of Agriculture, and the Office of Family

Readiness Policy, U.S. Department of Defense under Award Numbers 2014-48770-22587 and 2015-48770-24368.