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

1. My Health My Choice My ResponsibilityA 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

2. 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

3. 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

4. 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 • Trainer’s Manual available • Emphasis on self-advocacy!

6. Sample

7. Sample

8. Medications are listed on theHealth Information Form.

9. Overview of the Curriculum Each session contains • Themes – information and discussion • Behavioral objectives – “Things we’ll do today/After today’s 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

11. The doctor will need to check out what’s bothering you. A doctor or nurse will take your blood pressure during your exam. 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 wouldn’t have to take medicine. I have been exercising and now my cholesterol is down and I don’t have to take medicine. The doctor is really good and talks to me.”

12. 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

13. Don’t overeat! Fill your dish at the counter and bring it to the table. Sometimes it helps to call a friend if you feel blue.

14. Train-the-trainers Session • Trainer’s Manual with Session Guides • PowerPoint presentation available • Alternate activities suggested • Community resources encouraged

15. 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.

16. 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 doctor’s 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!

17. 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.

18. 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 person’s individualized service plan.

19. 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 trainer’s manual available via website download at www.wihd.org. • Variations on program: classroom use, prisons, transition groups, residential activities. • Need for research-based evaluations.

20. Remember to speak up for good health! For Project Information • Marilyn Vitale mvitale@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