My Health My Choice My Responsibility A training program on health self-advocacy

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My Health My Choice My
Responsibility A training
program on health self-advocacy

• Marilyn Vitale, Westchester Institute for Human
  Development, Valhalla, NY
• Mitchell Levitz, Westchester Institute for Human
  Development, Valhalla, NY
• Daniel Crimmins, Marcus Institute, Atlanta, GA
• Stephen Holmes, Self-advocacy Association of New
  York State, Schenectady, NY

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The Task

• Join with the Self-advocacy Association of New
  York State (SANYS) in the development and
  delivery of an eight-session training program
  related to health promotion and self-advocacy
• Funded by a grant from NYS Developmental
  Disabilities Planning Council (DDPC) to SANYS

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The Planning Team

• Marilyn Vitale, M.A., of WIHD and New York
  Medical College, who had previous experience
  adapting the Living Well with a Disability
  curriculum for people with cognitive disabilities
  
• Mitchell Levitz of WIHD and SANYS, who had
  extensive experience as a trainer on issues of
  disability policy and self-advocacy
• Daniel Crimmins, Ph.D., formerly of WIHD and New
  York Medical College, now at Marcus Institute,
  Atlanta, GA
• Stephen Holmes of SANYS
• James Huben and Sharon Winchester from the NYS
  DDPC

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Key Elements

• Eight session Curriculum written manual and
  website download
• Two-person team of an agency staff person and
  self-advocate as co-trainers
• Three health tools included
• Health Information Form
• My Medical Appointment
• My Health Plan
• Trainers Manual available
• Emphasis on self-advocacy!

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Sample
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Sample
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Overview of the Curriculum

• Each session contains
• Themes information and discussion
• Behavioral objectives Things well do
  today/After todays session I will
• Activities and personal stories
• Bulleted summaries entitled Things to Remember
• Homework Goal Form
• Emphasis on informed choice, responsibility,
  support, and follow-through

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Personal story Donald followed through with what
his doctor said and it really helped. He says,
Every time I go to the doctor my blood work is
good. One time I had high cholesterol. The doctor
told me to exercise so I wouldnt have to take
medicine. I have been exercising and now my
cholesterol is down and I dont have to take
medicine. The doctor is really good and talks to
me.
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Session Topics

• Take charge of your health
• Develop a health plan
• Be a health self-advocate
• Get moving
• Eat right
• Be healthy at home
• Feel good about yourself and others
• Goofing up and getting over it

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Train-the-trainers Session

• Trainers Manual with Session Guides
• PowerPoint presentation available
• Alternate activities suggested
• Community resources encouraged

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Initial Results

• Two focus groups and three replication groups
  conducted (32 participants in total).
• All five groups completed pre/post surveys the
  surveys were revised significantly after the
  focus groups.
• Many pre-survey questions related to nutrition,
  physical activity, and hygiene and safety were
  answered positively leaving no room for
  improvement. Possible explanations answer is
  true, participants want to look good, or agency
  staff are looking over shoulders.
• Most above items continued to be rated as
  desirable in post survey.
• The greatest improvement from the pre to the post
  survey occurred in the first two questions about
  speaking up, the question about having a health
  plan, asking questions to the doctor, and knowing
  what to do when they forget to work on their
  goals. These questions most reflected
  self-advocacy skills.
• All were pleased with group, did not want to see
  it end, felt comfortable with trainers, felt they
  learned a lot.
• All left with a health plan and were ready to
  work on goals.

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Six-month Follow-up

• Twelve participants attended two six-month
  gatherings. Follow-up survey was given at each
  with these results
• Eleven worked on goals and seven reviewed them
  with support person on My Health Plan ten added
  goals.
• Seven know where their Health Information Form is
  located, six had brought it to the doctor, and
  six had added to it.
• Nine felt that My Medical Appointment helped them
  to speak up at the doctors office and to follow
  through with doctor's orders. Five brought it
  with them to the doctor.
• Nine keep all the forms where they can get them
  easily.
• Nine do more physical activities and eight do
  more chores.
• Nine choose healthier foods and wash hands often.
• Eleven know what to do when feeling blue.
• Eight volunteer in the community one group
  member did not attend the follow-up since he was
  volunteering at the fire house!

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Final Thoughts

• TRAINERS MUST
• Read material and plan session ahead of time
  decide on responsibilities work as team.
• Engage group with activities rather than read
  from text.
• Refer to Health Tools throughout seminar and
  encourage group to use them after seminar ends.
• Focus on behavior more than knowledge.
• Have support persons understand the program and
  their role in encouraging participants.
• Maintain contact with group members and support
  persons after seminar ends.

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Final Thoughts

• OBSERVATIONS
• Persons who live either independently, with some
  support, or with family have more control over
  medical and personal information relative to
  those living in group homes.
• Persons living independently may have more
  opportunity to choose, but (like most Americans)
  may not always make the most informed choices.
• Lifestyle change must be promoted by
  incorporating goals from the program into a
  persons individualized service plan.

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Next Steps

• SUSTAINABILITY
• Staff and self-advocates from additional ten
  agencies across the state have been trained.
• Nine seminars are presently in progress.
• Curriculum and trainers manual available via
  website download at www.wihd.org.
• Variations on program classroom use, prisons,
  transition groups, residential activities.
• Need for research-based evaluations.

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• For Project Information
• Marilyn Vitale mvitale_at_wihd.org 914-493-5204
• For Organizational Information
• WIHD, Cedarwood Hall, Valhalla, NY 10595
  www.wihd.org
• Marcus Institute www.marcus.org
• SANYS www.sanys.org
• DDPC www.ddpc.state.ny.us