1. The North Carolina Relationships Initiative http://www.hsri.org/project/north-carolina-relationships-initiative Jaime Daignault, M.S., Human Services Research Institute Monica J Foster, CPSS CC CVBC, BUTTERFLYWHEEL Motivation, Advocacy & Consulting Presentation to the Disability Systems Change Committee May 19, 2011

2. Project overview Issue: People are lonely and want relationships, yet there are barriers Purpose: Engage people to create a supportive environment for relationship development Expected outcome: Statewide policy recommendations to reduce loneliness and increase opportunity 2

3. Major grant activities Reduce loneliness Increase social opportunities Identify barriers Local action Local trainings Statewide discussion Policy recomme ndations 3

4. Recent grant activities Completed data collection Preliminary findings Local action Trainings Next steps… 4

5. Data collection… 2010 Focus groups with 24 family members (3), provider agency staff (14), and self-advocates (3 adults; 4 youth) 2011 Focus groups with 74 self-advocates in Asheville (12), Charlotte (25), Greensboro (19) Monroe (5) & Raleigh (13) 2011 Interviews with 30 parents (10), provider agency staff (10, and self-advocates (10) in several communities 5

6. Data representation 6 Focus groups (7) Interviews (30) Trainings (3) Local action (4 monthly groups)

7. Preliminary findings Where we are todayBarriersWhat we can do People with ID/DD feel lonely and isolated People do not have control of their lives “Behaviors” Paid staff are filling the role of friend We know there is a problem Parents and agencies are reluctant to discuss issues related to intimacy and relationships Fears Attitudes and beliefs about disability Transportation The effects of poverty Lack of knowledge & skills “Service system is isolating” Lack of opportunity Misinformation about guardianship Lack of privacy Religious views vs. individual preferences Create a supportive environment around people Create opportunities with a person-centered approach to integrate people into their community based on interests Help people “become a regular” Examine policies that isolate Education for everyone 7

8. Self-advocate summary Self-advocates told us…Ideas “I just want my life to be mine” “I want to know what my rights are and what staff rights are” “I want to learn how to meet other people and be with other people” “I want to know how to keep safe so I don’t get hurt” “I’d like to have somebody to love and to love me” “I want more control over my own choices and opportunities to learn from my mistakes” “I want privacy” “I want my parents to understand that my decisions are mine” Allow us to live like an adult Stop telling us we can’t have or do things – show us how Staff should just provide support – not control our lives Let us make our own decisions and learn from our mistakes Listen to what self-advocates want instead o telling us what we want for ourselves Do not isolate people with disabilities 8

9. Parent & staff summary Parents & staff told us they…Ideas Are worried about the safety of their children/the people they support Are worried about the negative messages people with disabilities receive about who they are and the kind of life they can have Want people with disabilities to speak up for themselves Want to protect their children/the people they support, yet also want them to have choices and opportunities Start early: Educate children with disabilities about speaking up for themselves, appropriate social behaviors, how to keep themselves safe, and what to do when they have a problem Raise disability awareness to increase acceptance of people with disabilities Education for families and support staff about how to support healthy sexuality and relationship development 9

10. Local action Asheville, Greensboro, Raleigh, & Monroe Statement, credo, or bill or rights that defines what people want and expectations for support – Community presentations – Video – Potential for state-wideness 10

11. Local trainings Widening the Circle: Supporting people with disabilities in relationships – May 23 rd Wilmington – May 24 th Greensboro – May 25 th Sylva Trainings goals – Learn about the issue and barriers – Learn about possibilities and opportunities – Contribute to discussion of what can be done 11

12. Next steps Conduct local trainings in Wilmington, Greensboro & Sylva Finalize findings Draft policy recommendations Schedule statewide teleconferences to share recommendations and get feedback Use policy recommendations to encourage discussions for change 12

13. Questions? Jaime Daignault, HSRI jdaignault@hsri.org 503-924-3783 x 14 www.hsri.org Monica J Foster, BUTTERFLYWHEEL monicajfoster@butterflywheel.com 704-490-2063 www.butterflywheel.com 13 http://www.hsri.org/project/north-carolina-relationships-initiative