INTRODUCTION

1. INTRODUCTION • The National Baseline Study will consist of the cumulative results of the samples drawn from the participating disability agencies. • Each agency will gather POMs data from a stratified random sample of the regular adult users of the agency’s services. • The Report will not identify the service users or the centres which took part. Only Service Coordinators will be acknowledged in the Report.

2. 28 Participating Services Anne Sullivan Centre. Brothers of Charity: Galway, Roscommon, Clare, Limerick, Kerry, Southern, Waterford. Cheeverstown. Cheshire. Cloonamahon, HSE/NW. Dara Residential. Gheel Autism Services. IWA. Irish Society for Autism. Malta Services. Lorrequer House. Peamount. Prosper Fingal. St John of God: Menni, STEP, Carmona, Breannan. St Michael’s House. St Patrick’s Kilkenny. Peacehaven Trust. Sunbeam House. Walkinstown. Western Care.

3. PURPOSE OF THE NATIONAL BASELINE STUDY • Gather measurable data on people’s current quality of life • A reference point to measure our progress in delivering outcomes to people • A national reference point for any agency to check their own strengths / challenges • A reference point for international comparisons

4. What it’s Not! • A competition to impress the neighbours! (i.e. the HSE, neighbouring agencies, parents & families, the local press) What it May Be! • A check on how we’re doing (for ourselves!) • A preparatory step towards CQL Accreditation

5. A Good Piece of Research • Using a valid, reliable instrument • Carefully selecting a representative sample • Collecting the data: thoroughly and consistently • Inputting without error and analysing appropriately • Communicating the findings clearly to all stakeholders and other interested parties.

6. Careful selection of a representative sample • Random Sample = Randomly selected to be representative of the whole group. • Stratified Sample = Ensuring adequate representation by gender, age and disability. Using a combination of the two.

7. Valid, Reliable Instrument The Personal Outcomes Measures (POMs) interview protocol developed by the Council on Quality and Leadership: Personal Outcome Measures, 2000 edition. and CQL Trainer’s Manual, 2000 edition.

8. The validity and reliability of the instrument have been reported in a number of publications: Gardner, J.F., Carran, D.T. & Nudler, S. (2001) Measuring quality of life and quality of services through personal outcome measures: Implications for public policy. International Review of Research in Mental Retardation, 24, 75-100. Gardner, J.F. & Nudler, S. (eds.) (1999) Quality Performance in Human Services: Leadership, Values and Vision. Baltimore: Brookes. Gardner, J.F., Nudler, S. & Chapman, M. (1997) Personal Outcome measures of quality. Mental Retardation, 35, 295-305. Gardner, J.F. & Carran, D.T. (2005) Attainment of Personal Outcomes by people with developmental disabilities. Mental Retardation, 43, 157-174.

9. Collecting the Data: Thorough & Consistent The reliability of the data gathered will be assured by: • Having two trained and experienced POMs interviewers working as a team (interviewers have completed the 3 or 4 day training workshop in the use of the Personal Outcome Measures); • Interviewer-teams will be supervised by a Council- accredited POMs trainer who will review the data from each interview with the team and enter the data onto the Data Sheet.

10. Inputting, Analysis & Writing Up • This is the responsibility of the Outcomes Project. • Once the data sheets are completed and delivered to the Project Office, your job is done! • …until the Report is published! A summary large print report will be prepared so participants can learn of the results. Other formats with your assistance!

11. NEXT … • Maura and Suzanne will work on ensuring the reliability of the data collection • Later, Bob will look at drawing your sample and completing your data sheets. • Margaret will review the practicalities of supporting the interview-teams, etc.

13. National Baseline Study:Sampling Procedures Technical Seminar Sunbeam House, Bray 18th January 2007

14. SAMPLING • Random selection – everyone has equal chance of being selected • “Stratified random sampling” – ensure adequate representation of age, gender, type / level of disability

15. Sample Size: Number of Number in eligible adults sample 1 - 100 6 101 - 300 12 301 - 500 18 501 + 24 Minimum Sample Size = 6

16. 1. DEFINE GEOGRAPHIC AREA • Normally, the geographic area is the whole agency. • For some geographically spread agencies, the catchment area is a county or other defined area, if the HR and Financial functions are devolved locally. • Clarify what the geographical area being sampled for this National Baseline is:____________________________

17. 2. IDENTIFY NUMBER OF ELIGIBLE ADULTS Total number of adults supported by the agency = _____ Take away number not receiving regular weekly service = _____ Total number of eligible adults = _____

18. 3. BREAKDOWN OF ELIGIBLE ADULTS Number of Men = ___ Women = ___ Number aged 18 – 34 ___ aged 35+ ___ PRIMARY DISABILITY: Number with ID: ____ Number with mild or moderate ID: ___ Number with severe or profound ID: ___ Number with ASD: ____ Number with physical/sensory impairment: ___

19. 4. Breakdown of total eligible sample by age, gender, disability / level of ability Complete the yellow boxes first, starting here

20. 5. Fill in the remaining white boxes

21. To begin selecting your sample … • Total number of eligible adults = ____ • Sample size = ___ (6, 12, 18 or 24?) • Ratio is: total number divided by sample e.g. 212 divided by 12 = 18 • So for every 18 adults, we will select 1.

22. 6. Using a red pen, put in 1 for every 18

23. 3. BREAKDOWN OF ELIGIBLE ADULTS EXAMPLE: Number of Men = 109 Women = 103 Number aged 18 – 34 118 aged 35+ 94 PRIMARY DISABILITY: Number with ID: 212 Number with mild or moderate ID: 159 Number with severe or profound ID: 53 Number with ASD: ____ Number with physical/sensory impairment: ___

24. EXAMPLE: 4. Breakdown of total eligible sample by age, gender, disability / level of ability Complete the yellow boxes first, starting here

25. EXAMPLE: 5. Fill in the remaining white boxes

26. EXAMPLE: To begin selecting your sample … • Total number of eligible adults = 212 • Sample size = 12 (6, 12, 18 or 24?) • Ratio is: total number divided by sample e.g. 212 divided by 12 = 18 • So for every 18 adults, we will select 1.

27. EXAMPLE: 6. Using a red pen, put in 1 for every 18

28. 7. Find Random List of Names, PIN numbers, etc. • Use PIN numbers (if everyone on database) • Use a complete list of service users already in existence (compiled for another purpose) • Pull together existing lists to make complete list

29. Check Accuracy of the list • + make any corrections • Any exclusions? (not regular users of service) • + make any corrections • Check totals for each variable: • Age Group • Gender • Primary Disability • Level of ID • Select Proportionately using Sampling Frame

30. When you pick a name at random: • Write name on Post-It and identify the cells it fills: e.g. Anne Murphy Female 18-34 M/M ID • Once any particular cell is full, mark next occupant as “Stand-by”

31. EXAMPLE: 7. Pick individual names at random, and assign to correct cells:

32. Data Collection:Planning for the Practicalities • Management Team / Ethical Approval • Consent of interviewees (or replacements) • Selection & Briefing of Interviewers – experienced, in 2s, • Arrange dates for data collection and review of data with Trainer • Transfer completed data sheets to Project Office.

33. Consent • Very clear explanation: what are you asking the person to do, and why • No negative consequences if you say No! • Assurance of confidentiality • Feedback on the study? • Any recognition for participating? • See attached Info Letter and Consent Form 1. Written Explanation 2. Written consent, witnessed if appropriate