Richard Male and Associates

24 questions – identical in electronic and print

form

Questions developed by RMA

with VOR staff input and approval

TOTAL RESPONDENTS – 414

65% used electronic version

35% used paper version

Timing was February-March

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Why a summary presentation?

• Electronic responses are a 155-page PDF

• Paper responses have been entered into a

32-page spreadsheet with click-to-read windows

for all open-ended answers

• VERY VIEWABLE as long as you’re viewing it electronically

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“A man’s feet must be

planted, but his must

survey the world.”

–G. Santayana

PART ONE:

-- Prompted questions (i.e., multiple choice)

-- All responses reflected here

PART TWO:

-- Open-ended questions

-- You will see a sampling of responses

CLOSING:

-- Themes and concerns

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How long have you been a member of VOR?

• 1 – 5 years 27%

• 6 – 10 years 23%

• 11 – 15 years 20%

• 16 – 20 years 13%

• More than 20 years 17%

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You have a very balanced

“arc” and loyal members

What is your interest in VOR?

• Family member 40%

• Court-appointed guardian 5%

or conservator

• Both family member 50%

and legal guardian

• Professional in ID/DD field 6%

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Half of your members serve

in the dual role of family

member and guardian

If you are a family member of someone with

ID/DD, what is your relationship?

• Parent 64%

• Sibling 32%

• Aunt/Uncle 1%

• Cousin 2%

• Grandparent 1%

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Where does the person with ID/DD reside?

• We live together 2%

• We live in the same community 18%

• We live in the same state 63%

• We live in different states 18%

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If not with you, in what setting does the person

with ID/DD reside?

• Public ICF/MR 71%

• Private ICF/MR 11%

• Community Home 17%

• Nursing home 1%

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82% live in

public or private ICF/MRs

Overall, how do you feel about the progress of

the organization today?

• Very good 74%

• Just OK 22%

• Not good 5%

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The membership at large is

not completely comfortable

with VOR at board level

How confident are you that VOR is positioned

and prepared to succeed in the next 1-5

years?

• Very confident 26%

• Confident 44%

• Somewhat confident 22%

• Not confident 9%

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Do you participate in any lobbying on a local, state, or federal level?

• I wrote letters and/or emails 65%

• Personal visits with elected officials 37%

• Attended Town Hall or other

public meetings 29%

• Participated in a rally 12%

• I did not do any lobbying 14%

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How would you describe the amount of

communications you receive from VOR in

any form (email updates, action alerts, newsletter,

etc.)?

• Not adequate 7%

• Adequate amount 90%

• Too much 3%

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How useful is the communication you receive?

Very useful 37%

Useful 41%

Somewhat useful 19%

Not particularly useful 3%

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How often do you visit the VOR website?

• Several times a week 3%

• Once a week 11%

• About twice a month 11%

• Monthly 12%

• Less often than monthly 63%

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Either improve web site or it

doesn’t warrant future

time/money

Do you find the website useful?

• Very useful 37%

• Somewhat useful 47%

• Not often useful 10%

• Not at all useful 6%

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Useful, but not frequently

visited … why? Not current

info?

What do you believe are the organizational strengths of VOR?

• “Washington DC conference”

• “Advocacy”

• “You exist to speak for the voiceless”

• “Strong, unified voice for intellectually disabled”

• “Emphasis on action, not political correctness”

• “VOR stands for CHOICE of services”

• “It is driven by parents, not by professionals”

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These are samples from

hundreds of responses

What are its weaknesses?

• “Funding—always on a shoestring”

• “Lack of transparency from board”

• “The old acronym VOR prevents some alliances and hurts credibility”

• “No local meetings”

• “Leadership turmoil”

• “Not enough young people involved”

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Are there threats on the horizon, in your opinion? Is there a risk to maintaining the status quo?

• “Need to bust the myth that every DD person is happier in the community”

• “There is too much emphasis in the world on a community setting for everyone”

• “Advocacy message is well thought out and well spoken, but not sure how effective VOR is in delivering the message on impact”

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Do you feel that VOR’s activities and priorities are adequately

focused on your greatest concerns for people with ID/DD?

• “Yes”

• “They are focused, but not forceful enough”

• “Yes, but our opponents have way more money, power,

influence and headway”

• “I see mixed signs that the board is struggling with the

focus and probably has disagreements

that may lessen VOR effectiveness”

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Do you believe there are high priority threats that VOR is not

addressing, or not addressing adequately?

• “Could VOR mount an intense, national effort to make legislators understand what ‘profound’ means—and how those people are not what is seen out bagging groceries or working in greenhouses?”

• “Community care is primarily aimed at higher functioning clients to the detriment of more severely disabled clients”

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How comfortable or confident are you that the

governing board is running VOR effectively?

• “They don’t listen to member concerns”

• “Very comfortable”

• “Only a small circle is allowed to be a board

member”

• “Lack of adequate board vision”

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How comfortable are you that the VOR staff

meets your needs?

• “Very”

• “Not sure”

• “It tries”

• “Responsive and helpful”

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Sympathetic . . . but

frustrated that VOR is not

growing

We hope that you have made a recent donation to

VOR in addition to annual dues. If not, why not?

• “Income low”

• “Cannot afford”

• “Not confident where VOR is heading”

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Income levels are a factor,

but realize that there may be

more to it

What actions could VOR take to increase your support?

• “Host regional meetings”

• “Case statement needs to be more compelling”

• “Narrow the focus to work more directly through state and local family associations, and less through Washington lobbyists”

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The local presence and

activity is clearly an unmet

wish of members

Do you have any other observations you would like to offer at this time?

• “You are the only organization that truly listens”

• “We have an amazing organization”

• “VOR could be so much bigger but without vision and planning and with a continuation of secrecy, it cannot grow”

• “Message and philosophy is great but management is poorly done”

• “Just keep up the good work, we need you!”

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Open-ended comments tend

to range from very

complimentary to critical