The North CarolinaRelationships Initiativehttp://www.hsri.org/project/north-carolina-relationships-initiative

Jaime Daignault, M.S., Human Services Research InstituteMonica J Foster, CPSS CC CVBC, BUTTERFLYWHEELMotivation, Advocacy & Consulting

Presentation to the Disability Systems Change CommitteeMay 19, 2011

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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

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Major grant activities

Reduce lonelinessIncrease social opportunities

Identify barriers

Local action

Local trainings

Statewide discussion

Policy recommenda

tions

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Recent grant activities

• Completed data collection• Preliminary findings• Local action• Trainings• Next steps…

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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

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Data representation

Focus groups (7)

Interviews (30)

Trainings (3)

Local action (4 monthly groups)

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Preliminary findingsWhere we are today Barriers What we can doPeople 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

FearsAttitudes and beliefs about

disabilityTransportation

The effects of povertyLack of knowledge & skills

“Service system is isolating”

Lack of opportunityMisinformation about

guardianshipLack 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

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Self-advocate summarySelf-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 adultStop telling us we can’t have or do things – show us howStaff should just provide support – not control our livesLet us make our own decisions and learn from our mistakesListen to what self-advocates want instead o telling us what we want for ourselvesDo not isolate people with disabilities

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Parent & staff summaryParents & staff told us they… IdeasAre 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

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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

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Local trainings

• Widening the Circle: Supporting people with disabilities in relationships– May 23rd Wilmington– May 24th Greensboro– May 25th Sylva

• Trainings goals– Learn about the issue and barriers– Learn about possibilities and opportunities– Contribute to discussion of what can be done

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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

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Questions?Jaime Daignault, HSRIjdaignault@hsri.org503-924-3783 x 14www.hsri.org

Monica J Foster, BUTTERFLYWHEELmonicajfoster@butterflywheel.com704-490-2063www.butterflywheel.com

http://www.hsri.org/project/north-carolina-relationships-initiative