Excellence in PAS: Measures and Training Materials Washington University in St. Louis David B. Gray, Ph.D. Jessica L. Dashner, OTD OTR/L October 28, 2010 Purpose Purpose of this project is to measure the effectiveness of a new Paraquad training program for Personal Assistance Services in affecting the overall community participation of people with disabilities. 1
Agency vs. Consumer Directed AGENCY Directed PAS Model CONSUMER Directed PAS Model Home health agencies direct care Based on medical model Agency is staffed by nurses, social workers, and other healthcare professionals Agency makes all decisions related to personal attendant care Born out of the Independent Living Movement Consumer (recipient of care) is responsible for hiring, training, setting work schedules, and managing their own attendants Friends or family members can be hired as an attendant Benjamin, Matthias, & Franke, 2000; Beatty, Richmond, Tepper, & DeJong, 1998; Hagglund, Clark, Farmer, & Sherman, 2004 Consumer Directed Personal Attendant Services at Paraquad Who is the Consumer? Who is eligible to be a personal attendant? Task approval Paraquad s CDPAS goals and objectives 2
Overview Surveyed Consumers enrolled in CDPAS Program (N=100) Surveyed over 100 PA Providers Conducted Consumer Training Program Pilot Study 7 Sessions At Paraquad 14 Participants Assisted with development and implementation of PA Training Program Surveys CDPAS Outcome Measure Questions from CORE/PARTS/SPARC Consumer Training Survey Relationship and Satisfaction with PA Skills and Knowledge Test Directing care, assistive technology, secondary health conditions PA Provider Survey Interest in Training/Topics 3
CDPAS Outcomes Measure Characteristics of Respondents (CORE): Demographics, health, and overall CDPAS quality Participation Survey (PARTS/PA): Choice, importance, satisfaction, pain and fatigue, difficulty level with and without CDPAS, unmet need, perceptions of safety (in ADLs and IADLs) Survey of Participation and Receptivity in Communities (SPARC): # of visits to specific places in the community PARTS/PA Survey Section *Personal Care..Dressing or Bathing *Toileting..Bladder or Bowel Care *Housekeeping.Working Inside Your Home *Meals Meals *Transportation.Leaving Your Home Community Participation *Medicaid Approved Services 4
Skills and Knowledge Test Developed to assess the change in the consumer s knowledge before and after training. 10 Question Multiple Choice Paper Sample Question: What information should your attendant know about you if he/she needs to call 911? How many brothers and sisters you have Location of the nearest firehouse Basic medical history and disabilities Location of your car keys Consumer Training Survey Developed based on the content in the Consumer Training Program. Pre Test- Completed in person (web or paper) Day of training session Post Test- Completed on telephone (web) 4-6 weeks after training Sample Question: How familiar is your personal attendant with the early indicators of health problems you may experience? 1. Skin sores ͰVery unfamiliar ͰUnfamiliar Ͱ Familiar ͰVery familiar 5
CDPAS Outcome Study Inclusion Criteria Receiving CDPAS for at least 6 months Telephone Survey Compensated $10 gift cards from Paraquad Administered to 100 Consumers Obtain Participants from Paraquad CDPAS Outcomes Study N= 100 Participants interested in Consumer Training Program n= 54 Consumer Training Program Consumer Training Survey: Pre-Test Skills and Knowledge Test (Pre) Attended Consumer Training Skills and Knowledge Test (Post) n= 12 Participants not interested in Consumer training n= 41 Consumer Training Program Follow Up Consumer Training Survey: Post-Test CDPAS Outcomes Measure: Post 4-6 weeks n= 12 6
Demographics N=100 Test age Mean 54.05 Range 23-90 Marital status Married/unmarried couple 12.8% Divorced/widow/sep/never married 87.2% Gender Female 70% Male 30% Race White 19.8% Black 75.6% Other 4.6% Living Situation Live with others 66.0% Live alone 34.0% Highest grade completion Grade 1-11 33.7% Grade 12 or GED 39.5% Some college/college graduate 26.7% Annual household income $0 - $14,999 87.2% $15,000 or more 1.2% Prefer not to answer 11.6% Primary Impairment Which impairment MOST affects your participation in daily activities? 87.0% Physical Impairment: difficulty moving arms and/or legs 5.0% Visual Impairment: difficulty seeing 1.0% Hearing Impairment: difficulty hearing 1.0% Emotional Impairment: difficulty controlling thoughts/emotions/actions 0.0% Cognitive Impairment: difficulty with thinking/understanding 5.0% Other Impairment 7
Secondary Conditions Which of the following health conditions have you experienced within the past 6 months 91% Pain 67% Fatigue 64% Neck, shoulder, elbow, or wrist problems 55% High blood pressure 51% Weight problems 47% Poor balance (falls) 42% Depression 35% Spasticity 35% Bladder incontinence 30% Skin problems (pressure sore) 28% Bowel incontinence 27% Upper Respiratory Infection 23% Urinary Tract Infection General HEALTH 8
ER Visits In the past 6 months, how many times have you visited the Emergency Room/Urgent Care provider? 37.0% 0 times 54.0% 1-5 times 7.0% 6-10 times 1.0% 11-15 times 0.0% 16-20 times 1.0% More than 21 times Unexpected Calls or Visits In the past 6 months, how many times have you had to make an unexpected call/visit to a healthcare provider? 49.0% 0 times 44.0% 1-5 times 5.0% 6-10 times 1.0% 11-15 times 0.0% 16-20 times 1.0% More than 21 times 9
Medication Increase If the number of prescribed medications has increased in the past 6 months please indicate the number of additional medications you now take 58.0% 0 additional meds 40.0% 1-5 additional meds 2.0% 6-10 additional meds Overall SATISFACTION with PAS 1.0% Very Dissatisfied 1.0% Dissatisfied 13.0% Satisfied 85% Very Satisfied 10
Overall CHOICE with PAS 1.0% No Choice 2.0% Little Choice 8.2% Some Choice 88.8% A lot of Choice CARE Provided 0.0% Poor 4.0% Fair 15.0% Good 80.0% Excellent 11
Attendants Hired How many CDPAS paid personal attendants have you hired in the past 6 months? 73.0% 0 19.0% 1 5.0% 2 2.0% 4 1.0% 6 Attendant Training Has your paid CDPAS personal attend received formal training? (includes training from an outside organization, agency or center) 52.0% Yes 44.0% No 4.0% I prefer not to answer 12
CDPAS Quality How often in the past 6 months have any of your CDPAS attendants Never Sometimes Often Always Neglect you? 99.0% 1.0% 0.0% 0.0% Push, shove, or hurt you physically? Threaten or yell at you? Been responsible for money or items disappearing from your home? 100.0% 0.0% 0.0% 0.0% 98.0% 2.0% 0.0% 0.0% 99.0% 1.0% 0.0% 0.0% CDPAS Quality Cont How many times in the past 6 months where you 0 times 1 time 2 times 3 times More than 3 times Unable to get out of bed? 95.0% 0.0% 2.0% 0.0% 3.0% Injured 99.0% 1.0% 0.0% 0.0% 0.0% 13
Frequency: Leaving Home How frequently does your CDPAS paid personal attendant help you leave your home? Yearly 0.0% Monthly 26.3% Weekly 57.9% Daily 15.8% Evaluative: Choice How much choice do you have when your CDPAS paid personal attendant helps you with Dressing 3.83 Bathing 4.00 Bladder Care 3.67 Bowel Care 3.81 Meal Preparation 3.91 Housekeeping (working 3.80 inside home) Leaving home 3.95 *mean scores 1=No choice 2=A little choice 3=Some choice 4= A lot of choice 14
Evaluative: Control How much control do you have over when and how much the following is completed? Dressing 3.92 Bathing 4.00 Bladder Care 3.73 Bowel Care 3.82 Meal Preparation 3.89 Housekeeping (working 3.85 inside home) Leaving home 3.87 *mean scores 1=No control 2=A little control 3=Some control 4= A lot of control Completely Unable A Great Deal A Moderate Amount A Little None 15
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Additional minutes needed 11/03/2010 Unmet Need 45 40 35 30 25 20 15 10 Family Friend Other 5 0 Personal Care Bladder/Bowel Care Meal Preparation Work Inside Home Leaving Home CDPAS Outcomes Study: Focus Group Question: If you were allotted more time for a specific area of care in order to better meet your needs, which area would you chose? Basically to help us clean the house and have more time doing laundry [My attendant] is only doing 4 1/2 hours, and that goes quick. To me, I would suggest 6 hours, if that was possible. Question: Does your attendant work beyond the hours allotted they are paid for? That s the fun in hiring someone who cares about you. My daughter goes the extra minute, you know, in the mornings when I have to get up, because I don t feel good all the time. Sometimes I can get up and go, and sometimes I can t. She s pretty versatile, she ll help me out. 17
PA Provider Survey Majority interested in attending training session Recommended ½ day session Wanted to be trained in tasks they do not perform Challenges to Developing Training Program Ceiling effect Reported unmet need however rated services received very high PA providers are often family Program rules and restrictions Variety of services provided Include individuals who receive and provide Dressing/Bathing/Bowel/ Bladder/ Transfers 18
Excellence in PAS Beyond providing basic needs Importance of Community Participation Social Networking Improving communication between Consumer and PA Decreasing PA and Consumer stress Increasing familiarity with signs and symptoms of secondary conditions Consumer Training Program Supplement to Paraquad s current program inhome orientation Created to expand the managerial and communication needs of consumers 4 hour, in-person training held at Paraquad Provided to interested consumers who have completed the CDPAS Outcome Measure Participants Compensated $30 to attend training and complete surveys $20 to complete follow up surveys 19
Consumer Training Program: Session Survey completion Consumer Training Survey Skills and Knowledge Test Presentation Slides Videos Group Activity Social Connectivity- Where do you go? Tour EMC Exercise Facility Assistive Technology Reutilization Program Consumer Training Program CDPAS Program Specific Info Recruitment of PAs Interview Process Training New PAs Transfer Video Managing your PA Communication Video Clip Conflict Resolution Back-up Planning Emergency Planning Secondary Conditions Social Networking Activity Assistive Technology Paraquad Programs/Tour 20
Section 1: Consumer Training Content Recruitment Where to find? Where to advertise? Topics to cover when interviewing Job requirements, personal care tasks Tips for training new PA Describe the task step-by-step Demonstrate the task with a family member Section 2: Consumer Training Content Managing PA Direct attendants- not the other way around Communication Appropriate boundaries for relationship Conflict resolution Feedback techniques Avoid playing the blame game 21
Section 3: Consumer Training Content Back up and Emergency Planning What to do if PA cannot come to work Secondary Conditions Respiratory problems, urinary tract infections, and pressure sores Assistive Technology Ex: Wheelchairs, walkers, shower bench, bedside commode Consumer Training Program: Group Activity Social Connectivity Activity Cognitive Mapping- where do you go? Social Networking- who do you go with? The goal is to share accessible community locations in hopes of increasing community participation 22
PA Training Program CDPAS Program Specific Info Person First Language Expectations/Professional Behaviors PA Skills, Participation and Health Hand Washing Personal Care Secondary Conditions Emergency Preparedness Range of Motion Assistive Technology Paraquad Programs/Tour Transfers Timesheet Training Emergency Planning Multiple Choice Exam 23
Section 1: PA Training Content CDPAS Program Specific Who is the employer? Paraquad Role Contacts at Paraquad Background Checks Person First Language Expectations/Professional Behaviors Mandated Reporting HIPAA Medicaid Fraud Plan of care Section 2: PA Training Content PA Skills, Participation and Health Hand washing Importance Characteristics of a good attendant and importance of job Personal Care Dressing Techniques Bowel/Bladder Care Secondary Conditions UTI/Bowel impaction Pressure sores 24
Section 3: PA Training Content Assistive Technology Mobility Devices-types and definition Cushions ADL Devices Paraquad Programs and Services/Tour Transfers Video/handouts Hands-on Hoyer lift Timesheets Section 3 Cont..: PA Training Content Range of Motion Definition/purpose Types Techniques Emergency Preparedness Signs of medical emergencies/what to do Information PA needs to know Basic health history Medications Family contacts 25
Section 4: PA Training Content Multiple choice exam Training Content Must pass test to receive $.24/hour pay increase Paraquad Tour Enabling Mobility Center 26
AT Reutilization Program RESULTS FROM CONSUMER TRAINING PROGRAM PILOT STUDY 27
Preliminary Demographics Of Participants Gender: Female 58% Marital Status: Single 41% Widow 16% Divorced 25% Married 8% Separated 8% Education Completed: Grade 1-11: 42% Grade 12 or GED: 50% College 1-3 years: 8% n = 12 Impairment: Physical 67% Visual 33% Race/Ethnicity: African American 100% Age: Range: 23-84 Mean: 49 Personal income: $0-$14,999 92% Living arrangement: Living with others 50% Preliminary Results: Satisfaction Overall satisfaction with Attendant Prior to training 75% Very satisfied, 25% satisfied After training 91.7% Very satisfied, 8.3% satisfied 28
Reasons for Satisfaction Improvement in Consumer- Attendant Relationship after Training Percent of Participants 29
Preliminary Results: Safety Results indicated that all participants were safe before training, but the training did have some positive effects Transfers: Overall satisfaction did not change But 3 people indicated an increase in frequency of PA help I have changed transfers to make them easier, more streamlined, and safer. How familiar is your PA with your Emergency plan? Before training, 7/10 at max (Very familiar) After training, 10/10 at max Do you have a back up plan when PA does not come? 11/12 had back up plan before training, 12/12 after training Familiarity Of PA With Early Indicators Of Health Conditions 7 6 5 4 3 2 1 0 Pre Post Bowel impaction Very Unfamiliar Unfamiliar Familiar Very familiar 30
Familiarity Of PA With Early Indicators Of Health Conditions 7 6 5 4 3 2 1 0 P re P o st Pneumonia Very Unfamiliar Unfamiliar F amiliar Very familiar Familiarity Of PA With Early Indicators Of Health Conditions 8 7 6 5 4 3 2 1 0 P re P o st Urinary Tract Infections Very Unfamiliar Unfamiliar F amiliar Very familiar 31
Preliminary Results: Participation Training did not appear to have an effect on the frequency in which participants visited specific places in the community 75% of participants reported that they exercised more after the training Saw the exercise facilities I (now) feel it s more important to exercise and getting more involved. Preliminary Results: Skills and Knowledge Test Did not change from Pre to Post Test 80% Correct Answers 32
Next Steps Addition of items to CDPAS Outcome Measure Further develop measures for PA Resume Data Collection Train Paraquad staff to administer surveys and conduct training sessions Survey Consumers whose PA received training Schedule First Consumer/PA Training Session Participants Measures Intervention Outcome Measures Outcome Measures Recruit and Enroll Consumers N=100 Recruit and Enroll Providers N=100 Baseline Assessment Baseline Assessment Attend Consumer and PA Training Program at Paraquad Short Term Follow-up Assessments Short Term Follow-up Assessments Long Term Follow Up Assessments Long Term Follow Up Assessments 33
Contact Information David Gray, Ph.D. graydb@wusm.wustl.edu Jessica Dashner, OTD OTR/L dashnerj@wusm.wustl.edu 34