University Center for Excellence in Developmental Disabilities Louis de la Parte Florida Mental Heal

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University Center of Excellence for
Developmental Disabilities

• Advocating for Yourself Others
• Nila Benito
• Benito_at_fmhi.usf.edu

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Welcome

• Charm, Brian,
• Scotty Thometz
• and
• Nila, Vincent,
• Joseph Benito

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Advocating for yourself others . . .

• How wonderful that no one need wait a single
  moment before starting to improve the world.
  
• -Anne
  Frank

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What does it take to be an advocate for yourself
others?

• An important issue (Something that impacts you
  personally may impact many others or not. Power
  in numbers.)
• Passion and persistence.
• The thoroughness with which the issue, the
  challenges, and the solutions are explained.

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Your Issue

• What is your important issue where you want to
  see change happen?

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A Case Example

• 2008 HCBS waiver legislative changes and the
  imminent harm to all people with DD in the
  community.

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Where did we start ?

• The issue being faced is the result of a bill
  passed in the legislature and the only way to fix
  it now is to ask the legislature.

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Bill 1124 stated

• Personal care assistance services shall be
  limited to no more than 180 hours per calendar
  month and shall not include rate modifiers.
  Additional hours may be authorized only if a
  substantial change in circumstances occurs for
  the individual.
• Residential habilitation services shall be
  limited to 8 hours per day Additional hours may
  be authorized for persons who have intensive
  medical or adaptive needs and if such hours are
  essential for avoiding institutionalization, or
  for persons who possess behavioral problems that
  are exceptional in intensity, duration, or
  frequency and present a substantial risk of
  harming themselves or others. This restriction
  shall be in effect until the four tiered waiver
  system is fully implemented.

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Fully Understand the Issue

• Answer as many of the following questions as you
  can
• Who is being is impacted?
• What are the pros and cons of the issue?
• What caused the problem you are addressing?
• Why should a decision-maker care other than Its
  the right thing to do?
• What forces might be influencing decision-makers?
  
• Who are your allies and opponents?
• What it will take for decision makers to support
  your goals?

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Who is Being Impacted?

• Use data if possible
• The more than 27,000 individuals with DD living
  in their family home and those in their own home
  and supported living. They cost the least on
  average only 29,000 per year. Group Homes cost
  47,000 per year.
• Our children had received letters from the Agency
  for Persons with Disabilities informing us of a
  reduction PCA services.

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Why should a decision-maker care other than . .
.Its the right thing to do?

• Its common sense to support people who want to
  live in the community
• It is much cheaper than institutions and ICFDDs.
• Individuals have much better quality of life
  outcomes in the community.

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What are the consequences and negative impact of
the issue?

• People are being harmed. Personal care assistance
  services provides eating, meal prep, bathing,
  dressing personal hygiene and activities of daily
  living support to an individual. This service
  is the backbone of support for individuals who
  live in their own homes or family homes and was
  now limited to only 6 hours a day.
• No cost savings will be realized.
• Individuals would not get enough PCA and
  have to move into more costly and restrictive
  living environments.

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Who are your allies and opponents?

• People on the waiver were and still are being
  pitted against people on the wait list.
• Who are the real stakeholders? People with DD. No
  conflict of interest!

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Developing Solutions

• FACT Individuals who lived in Group Homes (res
  hab) had a much clearer concise definition of who
  would be eligible for needed services.

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Developing Solutions

• SHORT TERM FIX NOW! Add the bill phrase from the
  Res.Hab directive to the PCA lauguage
• Additional hours may be authorized for persons
  who have intensive medical or adaptive needs and
  if such hours are essential for avoiding
  institutionalization, or for persons who possess
  behavioral problems that are exceptional in
  intensity, duration, or frequency and present a
  substantial risk of harming themselves or others.

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On a personal level, what did Charm Scotty do?

• Keep it simple and specific!
• A One Page Letter
• Developed a personal statement explaining
  Scottys situation and how this reduction was
  placing him in crisis.
• Included their current contact information.
• Listed the natural support our family provides to
  Scott and that he was safe, healthy. I also
  explained that if Scott went into a facility type
  setting it would cost tax payers a lot more
  money, and place him at risk.
• Suggested a solution amend/change the wording in
  the bill at special session in October.
• Provided them with the suggested language change
• Visited with 16 legislators
• Sent letter to all by email

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On a personal level, what did I do?

• Did a similar letter about Vincent Joseph.
• Visited Legislators
• Emailed then Called. Called Again.
• Visited newspaper editorial boards
• Helped others create their story! Made it easy
  for them to advocate.

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How were many people heard as individuals?

• Visited Legislators
• Called Legislators
• Emailed Legislators
• Emailed Action Alerts to others (STOP THE HARM)
• Sent Letters by fax and overnight mail to
  Legislators

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How were we heard as a group?

• Rainy Day Rally a collaboration
• A Petition with FDDC

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What were others saying to legislators?

• A myth that people who live at home and on their
  own are not severe. This was discovered during
  Scottys visit Speaker Rubio and other
  legislators.

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How do you overcome this?

• Personal Relationships Very Important!
• ALWAYS Get to know your local Representative
  Senator. Develop a personal relationship. Its
  really easy and so critical to effectiveness of
  your advocacy.
• Senate http//www.flsenate.gov
• House http//www.myfloridahouse.gov/
• Contact the committee members of important
  committees so their know you.
• Children Families Elder Affairs
• Health and Human Services Appropriations
• Health Innovation
• Healthy Families

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You must

• REMEMBER!
• Be passionate and persistent. It's important to
  have the passion and persistence to overcome the
  entrenched attitudes and misinformation that
  decision makers may have toward disability
  issues.
• Passion is important because it can help sway
  undecided people to your viewpoint and it helps
  you focus on your goals.
• Persistence helps you follow through on
  commitments, and keeps your opponents scrambling
  to keep up with your kind of dedication.

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What Happened?

• The new bill language was passed except for the
  behavioral piece.
• For now a reprieve.

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Always Say Thanks!

• By email
• By phone
• In person
• is best!

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Whats Next?

• The tiers and now they are approved.
• HMOs

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Your Advocacy

• What can you do today or tomorrow to change
  something for yourself and/or others?

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RESOUCES

• Alinsky,S.D. (1971). Rules for radicals. New
  York, NY Vintage Books.
• Bobo, K., Kendall, J., Max, S.(1991). Organizing
  for social change a manual for activists in the
  1990s. Minneapolis, MN Seven Locks Press.
• Community Tool Box, Work Group on Health
  Promotion and Community Development, University
  of Kansas, Lawrence, KS http//ctb.ku.edu
• The Center for Community Change
  http//www.communitychange.org/default.asp