It's hard enough for parents to navigate this oftentimes scary and confusing world, but parents who have children with disabilities often find themselves intimidated and lost. In this 1.5 hour webinar, participants will learn about the world of advocacy and the ways in which it is possible to find and receive the services necessary for their children to thrive. This webinar will include types, effective strategies, case studies, examples, and motivating and insightful conversation pertaining to advocacy. It is our hope that participants will leave this webinar feeling prepared and ready to face the challenges that they encounter head-on and to teach others how to do the same.

1. 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

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

3. 3

4. 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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5. 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.
http://bit.ly/29JGbuN
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6. 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.
http://bit.ly/29LaKMC
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7. 
How would you define advocacy?
7

8. 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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9. 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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10. Informal advocacy
 Learning your rights
 Conversations
 People first language
 Networking with others
 Letter writing
 Documentation
 Speaking up during meetings
http://bit.ly/29TLmIbhttp://bit.ly/29PqOOx
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11. Formal advocacy
 Hiring an advocate or attorney
 Affecting legislation
http://ahs.uic.edu/cl/familyclinics/advocacy/
 Getting publicity or media coverage
 Utilizing procedural safeguards
 Providing educational opportunities for the public
11

12. Three themes of advocacy
1. Advocacy enhances coping
2. Advocacy involves struggle
3. Advocacy causes stress
(Wang, et al., 2004)
12

13. 
What are some possible barriers
to advocacy?
Special education? Mental
health?
13

14. 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
14

15. 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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16. 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
16

17. And on…
 Who has the time?
 Who has the money?
 Who can emotionally distance themselves from their
child?
(Cunconaan-Lahr & Brotherson, 1996)
17

18. Strategies to successfully advocate:
Steps to advocacy
18

19. 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
19

20. 1. Identifying the problem
 What is the problem?
 Is it individual or systemic?
20

21. 2. Identifying the responsible agency
 Who owns the problem?
 Who is responsible for providing the needed
services to address the problem?
21

22. 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.
22

23. 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?
23

24. 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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25. 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
25

26. Strategies to successfully advocate:
Communication
26

27. 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
27

28.  Most professional
fields are full of
acronyms
 Most parents are not
familiar with these
acronyms
Listening
28

29. ALWAYS ask questions!
29

30. 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?”
30

31. Positive reinforcement
http://bit.ly/2a462LW
31

32. Reinforce positive statements
 Provide food
 Use specific praise
 Write a thank you card
(cc to the person’s boss/employer)
 Express your gratitude verbally
http://bit.ly/2abfyzc
http://bit.ly/29VKl1r
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33. Perhaps most importantly…
DOCUMENT
DOCUMENT
DOCUMENT
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34. 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
34

35. 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.
35

36. 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
36

37. 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
37

38. Strategies to successfully advocate:
Parent Input Statements
38

39. 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
39

40. 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
40

41. Draft Parent Input Statement
41

42. 
What do you think is good
about Parent Input Statements?
42

43. Strategies to successfully advocate:
Attending meetings
43

44. At the beginning of the meeting…
44

45. 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)
http://bit.ly/29JPo6h
45

46. http://bit.ly/2bAyJSz
46

47. 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
47

48. 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?
48

49. 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
49

50. At the actual meeting
 Begin by focusing on what is working and the
positives of the individual
 Do not bring up the past
http://bit.ly/29S9RRn
50

51. At the actual meeting
 Take breaks at the meeting when emotions rise
 Sit in a circle
 Treat everyone with respect
 Eat
http://bit.ly/29SWwvj
http://bit.ly/29RFQ6b
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52. After the meeting
 Send a thank you note
 Follow up about the meeting in writing
 Make sure you document what was discussed
52

53. Sample letter
53

54. 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?
54

55. Resources for advocacy
55

56. 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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57. 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
57

58. What is one significant thing
you learned today?
58

59. 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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60. 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

61. • 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
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62. 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

63. 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.