The Institute on Disabilities Pennsylvania's University Center for Excellence in Developmental Disabilities

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1 The Institute on Disabilities Pennsylvania's University Center for Excellence in Developmental Disabilities Independent Monitoring for Quality (IM4Q) State Center Supplement Submitted to: Pennsylvania Office of Developmental Programs Statewide Steering Committee on Independent Monitoring Submitted by: Celia S. Feinstein, James A. Lemanowicz, and Mary Kay R. Cunningham The Institute on Disabilities Pennsylvania's University Center for Excellence in Developmental Disabilities Temple University 1755 North 13 th Street Student Center, Room 411S Philadelphia, PA February, 2010 College of Education Temple University Philadelphia, Pennsylvania

2 Introduction In , a total of 218 interviews were completed for individuals residing in the five State Centers. This year, there were a few changes to the instrument used to collect the data. There were three new items added to the Dignity, Respect and Rights section. In addition, at the request of the Office of Developmental Programs, there were 10 new items added to the instrument involving the frequency and intensity of physical activity. Additionally, a State Center Supplement has been created, to collect information for those individuals who do not communicate using words. The respondents are generally staff who know the individual well or family members. Because of the requirement to have the individual be the only respondent for the Satisfaction and Dignity, Respect and Rights sections, these data will be analyzed separately from those individuals who responded on their own behalf. In , the State Center Supplement was collected for 153 individuals residing at the five state centers: Ebensburg, Hamburg, Polk, Selinsgrove and Whitehaven. A total of a 155 State Center Supplements were completed during the fiscal year IM4Q State Center Supplement Report Page 1

3 RESULTS The following table displays the distribution of AE of responsibility for the interviews conducted at the five state centers. The interviews were conducted by the local program in the AE where the state center is located. # of People Percent Allegheny 21 14% Armstrong/Indiana 3 2% Beaver 4 3% Bedford/Somerset 2 1% Berks 5 3% Blair 1 1% Bradford/Sullivan 0 0% Bucks 1 1% Butler 0 0% Cambria 2 1% Cameron/Elk 1 1% Carbon/Monroe/Pike 1 1% Centre 0 0% Chester 1 1% Clarion 0 0% Clearfield/Jefferson 3 2% Columbia/Montour/Snyder/Union 5 3% Crawford 1 1% Cumberland/Perry 3 2% Dauphin 0 0% Delaware 6 4% Erie 1 1% Fayette 0 0% Forest/Warren 1 1% Franklin/Fulton 0 0% Greene 1 1% Huntington/Mifflin/Juniata 1 1% Lackawanna/Susquehanna 0 0% Lancaster 3 2% Lawrence 3 2% Lebanon 1 1% Lehigh 7 5% Luzerne/Wyoming 13 8% Lycoming/Clinton 1 1% McKean 0 0% Mercer 5 3% Montgomery 1 1% Northampton 7 5% Northumberland 3 2% Philadelphia 27 17% Potter 0 0% Schuylkill 2 1% Tioga 1 1% Venango 4 3% Washington 0 0% Wayne 2 1% Westmoreland 4 3% IM4Q State Center Supplement Report Page 2

4 York/Adams 7 5% TOTAL % Satisfaction Respondents: For the State Center Supplement, someone who knew the individual well could respond about the individual receiving services (e.g. Does this person seem to like where they live?). For the EDE itself, only the individual receiving services/supports could answer the questions on satisfaction (e.g. Do you like where you live?). Percentages and the total number of valid responses are reported. SATISFACTION SC Supp (n) SC EDE (n) Does this person (seem to) like where they live? 99% (152) 92% (25) Does the person want to stay where they currently live? 96% (145) 76% (21) Does this person (seem to) like what they do during the 91% (135) 96% (23) day? (Does it seem like this person) wants to continue their 89% (141) 84% (19) current daytime activities/work? (Does it seem like this person) wants to do something 3% (141) 11% (19) else during the day? (Does this person) get to do things outside of their home 86% (146) - as often as they would like to (most of the time)? Always or most of the time have privacy (a place to be 89% (154) 95% (21) alone) when they want it Other people always or most of the time knock or ring the 43% (148) 50% (18) doorbell and wait for a response before coming into people s homes People always or most of the time knock on the bedroom 93% (150) 96% (23) door and wait for a response before coming in (Does the person) have friends they like to do things 39% (127) 65% (20) with, who are not staff or family (Does the person) have a best friend, someone they are 20% (120) - IM4Q State Center Supplement Report Page 3

5 really close to, other than staff? (Does the person) have a boyfriend or girlfriend they are 3% (141) - dating? (Does it appear the person) never feels lonely 89% (144) 44% (18) (Does it appear the person) always gets the services 97% (153) 90% (20) they need (Does it appear the person) feels very happy or happy 95% (151) 89% (18) overall with their life (Does it appear the person) feels housemates are very 94% (141) 79% (19) nice or nice Does the person have choices of food items at all 3 meals served daily 77% (121) - Satisfaction Scale: Based on 6 individual items, a Satisfaction Scale was developed. Scores on the Satisfaction Scale could range from 0 to 100, with a higher score indicating greater satisfaction. The average (mean) score for the State Center Supplement was with a standard deviation of 7.57 (for comparison, the state center EDE score was and respectively), significantly lower. The mode (the value that occurs the most frequently) was 100, indicating that many people were very satisfied on all measures of satisfaction It is interesting to note the differences in scores provided by individuals themselves and by surrogates. It is not clear whether these differences can be explained by differences in the level of support needs of the two groups. IM4Q State Center Supplement Report Page 4

6 Dignity, Respect and Rights Respondents: For the State Center Supplement, someone who knew the individual well could respond about the individual receiving services (e.g. Does the person carry identification of some kind?). For the EDE, only the individual receiving services/supports could answer the questions on dignity, respect and rights (e.g. Do you carry identification of some kind?). Percentages and the total number of valid responses are reported. DIGNITY, RESPECT & RIGHTS SC Supp (n) SC EDE (n) (Does the person) always carry a form of identification 21% (150) 33% (18) (Does the person) never carry a form of identification 56% (150) 39% (18) (Does the person seem to know they) always have 71% (131) 89% (18) someone in their life who will try to help make things better (The person appears to) go to staff at residence for help 85% (113) - most of the time People always help (the person) to learn/do new things 94% (142) - (The person) wants help to learn new things 59% (121) 67% (12) (It appears the person) is never afraid at home 90% (152) 79% (19) (It appears the person) is never afraid in the 89% (150) 88% (17) neighborhood (It appears the person) is never afraid at work, school or 93% (134) 88% (17) day activity (The person) does not vote 98% (147) 71% (17) (The person) would like to vote (if they don t vote) 1% (139) 12% (17) (The person appears to) know who their SC/QMRP/RSS 68% (137) - is (It appears the person is) always happy with their 90% (96) - SC/QMRP/RSS Their SC/QMRP/RSS asks what they want 94% (140) - IM4Q State Center Supplement Report Page 5

7 Their SC/QMRP/RSS always helps them get what they 99% (139) 79% (14) need (It appears the person) can always talk to their 83% (119) - SC/QMRP/RSS when they want (The person) had one SC/QMRP/RSS in the past year 88% (136) - (The person) got to choose the new SC/QMRP/RSS, if 0% (14) - they changed in the past year SC/QMRP/RSS always talks/listens to you (the person) when visiting 96% (136) - Afraid Scale: The scale included three measures that asked individuals if they feel afraid in their home, neighborhood, or at work/day activity. Scores on the Afraid Scale could range from 0 to 100, with a higher score indicating less fear. The average (mean) score for the State Center Supplement was with a standard deviation of (for comparison, the state center EDE score was and respectively) The mode was 100 Dignity and Respect Scale: The Dignity and Respect Scale included three measures that asked whether housemates/ roommates, staff at home, and staff at work/day activity are nice or mean. Scores on the Dignity and Respect Scale could range from 0 to 100, with a higher score indicating greater dignity (people being nice to you). The average (mean) score for the State Center Supplement was with a standard deviation of (for comparison, the state center EDE score was and respectively) The mode was 100 IM4Q State Center Supplement Report Page 6