R-1: R-1: Evolution of Measures of Participation and Environmental Facilitators and Barriers to Participation Washington University in St. Louis David B. Gray, Ph.D. Holly H. Hollingsworth, Ph.D. Jessica L. Dashner, OTD OTR/L MICL Advisory Meeting November 18, 2009

Post Policy Change Pre Policy Change Hypothesized Change In Social Participation by People With Disabilities: Pre and Post Social Policy Change in Social Policy USA - ADA UN - Convention on the Rights of People with Disabilities People with Disabilities People without Disabilities

Measures Objective Environment CRI pending Environment CHEC Subjective General Demographics CORE Participation PARTSM, PARTS/G Environment - FABS/M Participation & Environment SPARC

Measures Objective Environment CRI Pending Environment CHEC

Measures Objective Environment CRI Pending Environment CHEC Mobility General Buildings Restaurants Doctors Offices Exercise Facilities Houses of Worship Grocery Stores Pending Vision General Buildings Restaurants Doctors Offices Hearing General Buildings Restaurants Doctors Offices Developed with MICL Funds H133B MICL, University of Kansas, Glen White, Ph.D., PI

CHEC: Assessment Approach Do people with a mobility limitation get in, do what they need to do and get out without much difficulty? Currently being expanded to people with low vision and hard of hearing. Expansion made possible with MICL Funds H133B MICL, University of Kansas, Glen White, Ph.D., PI

CHEC – Restaurant: Feature & Item Development In three separate focus groups, a total of 42 impairment-specific features were described 14 Mobility 15 Vision 13 Hearing To assess restaurants for the presence or absence of these features, a total of 53 test items were developed 17 Mobility 20 Vision 16 Hearing Developed with MICL Funds H133B MICL, University of Kansas, Glen White, Ph.D., PI

CHEC-R Utility Study Occupational Therapy Student Group (n = 4) Community Disability Consultant Group (n = 4) CHEC-R Training Establish inter-rater reliability (r 0.90) Assess 10 restaurants Send CHEC-R report Reassess after 3 months CHEC-R Training Establish inter-rater reliability (r 0.90) Assess 10 restaurants Advocate for change: speak with manager, write a letter, etc. Send CHEC-R report Reassess after 3 months Developed with MICL Funds H133A University of Missouri, James de Jong, PI

Measures Subjective General Demographics CORE Participation PARTS/M & PARTS/G Environment FABS/M Participation & Environment SPARC

Evolution of Participation Measures PARTS/M Mobility Impaired & Limited CDC Funded 1998 – 2000 Components Temporal, Evaluative, Health and Support Paper and Pencil Psychometrics Published PARTS/G Expansion of PARTS/M to Low Vision & Hard of Hearing Added – Directed by, Control over, Difficult of, Time in Participation and more NIDRR Funded Planned sample size 1200, Psychometrics & Utility Studies PARTS/M NIH Funded 2003 – 2007 Computer Navigated Item Sequencing Web Based

Measures Subjective Participation PARTS/G Dressing 1 Bathing 1 Bladder Care 1 Bowel Care 1 Meals 1 Move Inside Home 1 Leave Home 1 Vacations Work Inside Home 1 Exterior Maintenance 1 Parenting 1 Intimacy Employment 1 Volunteering 1 Money Management 1 Community Activities 1 Religious Activities 1 Socializing Leisure Activities 1 Active Recreation Education 1 Exercising 1 Communication: Receptive 1 Communication: Expressive 1 MobilityVisionHearing Groups Personal Care DomainMobility DomainDomestic Domain Major Life Area DomainInterpersonal Domain Community Domain Changes to PARTS/G – ADDED Directed Participation 1 Participation areas Evaluation – ControlCommunication Expressive Impairments and limitations ofCommunication Receptive Low Vision & Hard of HearingExercise Pain & Fatigue QuestionsEducation Paid & Unpaid HelpFrequency of Help Developed with Funds from H133B MICL, University of Kansas, Glen White, Ph.D., PI; NCMRR/NIH -1R21HD Washington University, David B. Gray, Ph.D., PI; H133A University of Missouri, James de Jong, PI

PARTS-G: Internal Consistency and Test Retest Reliability

Measures Subjective Environment SPARC Home Grocery Store Pharmacy House of Worship Restaurants Homes of Family/Friends Large Stores Gas Stations Doctor's Office Museums/ Landmarks Public Parks Beauty Salon/ Barber Shop DME Sports Arenas Movie Theaters Shopping Malls Transportation Exercise Facilities MobilityVision Hearing Work, Volunteer or Education Participation HIGH Groups Participation MODERATE Participation LOW Developed with Funds from H133B MICL, University of Kansas, Glen White, Ph.D., PI; NCMRR/NIH -1R21HD Washington University, David B. Gray, Ph.D., PI; H133A University of Missouri, James de Jong, PI

Next Steps Use CHECs to objectively assess influence of community interventions CIL and other advocacy groups Use SPARC to subjectively assess influence of community interventions CIL and other advocacy groups Use PARTS/G to survey consumers who receive individual services Use CHECs, SPARC, PARTS/M and FABS/M to assess social policy changes