formative evaluation: prince edward island disability ... · evaluation primary questions exhibit 1...

FORMATIVE EVALUATION:PRINCE EDWARD ISLAND

DISABILITY SUPPORT PROGRAM

Final Report

July, 2003

Prepared for:

Province of Prince Edward IslandDepartment of Health and Social Services

Charlottetown, Prince Edward Island

Charlottetown • Prince Edward Island

In association with

LexEcon Consulting

Formative Evaluation:Prince Edward Island Disability Support Program

Table of Contents

Executive Summary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . i

1. Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11.1 Purpose and Organization of this Report . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11.2 Program Description and Context . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3

1.2.1 Program Description . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 31.2.2 Intent . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 41.2.3 Goals and Objectives . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5

1.3 Program Structure, Resources and Components . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 61.3.1 Program Structure . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 61.3.2 Resources . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 71.3.3 Program Components . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8

1.4 Scope of the Evaluation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 101.5 Methodology and Limitations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11

2. Trends in Disability Support Initiatives . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 142.1 Background . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 142.2 The Vision . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 152.3 Federal Role in Disability . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 162.4 Definition of Disability . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 172.5 Types of Disability Supports . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 172.6 PEI PALS Disability Statistics . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 192.7 The Standard Rules: A Tool to Mobilize International Action . . . . . . . . . . . . . . . . . . . . . . . . 212.8 Recent Policy Positions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 222.9 Disability Policy Success . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 242.10 Conclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 25

3. Participant and Program Activity Profile . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 283.1 Participant Profile . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 283.2 Program Activity Profile . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 33


4. Findings and Discussion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 394.1 Benchmarking Framework . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 394.2 Program Rationale and Model . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 414.3 Program Targeting, Eligibility and Participation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 41

4.3.1 Program Targeting . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 414.3.2 Eligibility . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 41

4.3.2.1 Financial Assessment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 414.3.2.2 De-Linking of Disability Support and Financial Assistance . . . . . . . . . . . . . . . . 454.3.2.3 Eligible Impairments . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 454.3.2.4 Eligible Supports . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 46

4.4 Program Design and Pre-Implementation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 474.5 Program Implementation and Current Status . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 50

4.5.1 Case File Transition . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 504.5.2 Partnerships . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 514.5.3 Communications . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 524.5.4 Administrative Processes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 53

4.5.4.1 Assessment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 534.5.4.2 Case Planning . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 544.5.4.3 Financial Support . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 574.5.4.4 Service Delivery Standards . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 584.5.4.5 Staff Competencies, Training and Development . . . . . . . . . . . . . . . . . . . . . . . . . 584.5.4.6 Support Coordination . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 604.5.4.7 Community Service Providers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 614.5.4.8 Corporate Culture . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 624.5.4.9 Case File Data Management . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 634.5.4.10 Financial Accountability . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 644.5.4.11 Review Process . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 64

4.6 Program Expenditures . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 65

5. Program Impacts, Effects and Cost-Effectiveness . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 675.1 Key Success Factors . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 675.2 Participants’ Satisfaction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 68

5.2.1 Current Active Files . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 685.2.2 Closed DSP Files . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 73

5.3 Community Service Providers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 745.4 Employment Outcomes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 745.5 Unintended Impacts and Effects . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 775.6 Excluded/Ineligible Populations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 775.7 Scope and Scale of Support . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 775.8 Cost-Effectiveness . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 785.9 Key Performance Indicators . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 80


6. Summary Observations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 826.1 Current Program Status Compared to Intent . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 826.2 Implementation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 836.3 Achievements . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 846.4 Gaps in Program Access and Service . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 846.5 Program Relevance . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 85

Appendices: A: Other DSP Descriptions Used by GovernmentB: Disability Support Program Sources and Uses of FundingC: Document Review ListD: List of Key Informant InterviewsE: References – Section 2: Trends in Disability Support InitiativesF: Case Audit Report


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Executive Summary

1 Has the Disability Support Program been implemented as intended?

2Are the Disability Support Program’s core activities (case planning, referrals and financial support) and types of services consistent with the program’s mandate?

3 What are the types and profiles of DSP interventions?

4 What is the profile of DSP participants?

5What impact has the separation of disability supports from income support programming had upon employment barriers for DSP participants?

6 What impact have DSP interventions had upon participant employment and employability by type of intervention and disability?

7 What impact have DSP interventions had upon participant income and participant dependence upon welfare assistance support?

8 What impact have DSP child disability supports had upon families with extraordinary child-rearing needs?

9 What impact have DSP interventions had in enhancing participant independence and improving their quality of life?

10 How satisfied are DSP participants with service delivery including reasons for dissatisfaction?

11 How effective has the support planning component of the DSP been in establishing partnerships with other disability support agencies?

12 Has the DSP produced any unintended impacts and effects?

13 Under the DSP, are there gaps in service delivery including eligible persons not served, waiting lists and lack of access to interventions?

14What key performance indicators would be useful for ongoing assessment of the efficiency and effectiveness of the Disability Support Program?

Program and Participant Profile

Implementation

Impacts, Effects and Cost-Effectiveness

Prince Edward Island Disability Support Program Formative Evaluation

Evaluation Primary Questions

Exhibit 1

PurposeBaker Consulting Inc., in association with LexEcon Consulting, was retained by the Prince EdwardIsland Department of Health and Social Services to conduct a formative evaluation of the province’sDisability Support Program (DSP). A formative evaluation is a “project in progress” snapshotevaluation designed to inform stakeholders of a program’s strengths and weaknesses at a specificpoint in time with a goal of identifying opportunities for improving efficiency and effectiveness.

The formative evaluation of the Disability Support Program was centred on 14 primary questionsdeveloped by key program stakeholders:


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MethodologyThe data collection methodology employed for this evaluation was broad-based, and included:

• focus groups with disability support workers and disability support administrators;• a literature review conducted by Department of Health and Social Services (DHSS) staff

focusing on current practices in government-based disability support programming;• a case audit of 30 DSP case files covering six randomly selected from each of five health

region administrative offices;• roundtable sessions with representatives of organizations in the disability support

community;• public input sessions;• focus groups with people with disabilities;• expert and key informant interviews, primarily one-to-one in-person;• a review of DHSS documents pertaining to the development and implementation of the

DSP;• quantitative telephone surveying conducted among:

< DSP participants and/or a proxy with an active DSP file;< former DSP participants and/or a proxy where service was completed and the

file closed;< individuals who applied to the DSP and were deemed to be ineligible for

financial or other reasons; and< individuals where a partial DSP application or file was opened but never

completed or an application was approved but service was never accessed; and• analysis of socio-demographic data of current and former DSP participants maintained

in the program’s electronic administrative database.

Participant ProfileThe participant profile was limited to 773 open files as at 30 April 2003 where the programparticipant was receiving recurring monthly financial support. Case distribution by health regionwas 16% West Prince, 23% East Prince, 44% Queens, and 16% Kings. Gender distribution was 54%male/46% female while mean age was 33 years. Seventy percent (70%) of the adult cases werereceiving government income support in addition to the DSP financial supports.

Participants under the age of 18 years accounted for slightly less than one-quarter (23%) of the casefiles with young adults (18 to 29 years) accounting for 19%, adults aged 30 to 49 years 39%, adults40 to 59 years 35%, and adults aged 60+ years 5%.

Among these cases files, 26% were coded as a physical disability, 64% a developmental orintellectual disability, 10% both physical and developmental/intellectual, and 0.1% mental illness.DSP administrators use percent functioning and behaviour scores to arrive at an overall level offunctioning of either very low, low, medium or high. The mean percent functioning score for all


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Recurring Monthly Financial Support by Major Category

41.3 $262 $15021.4 $95 $51

8.7 $159 $1071.4 $90 $404.4 $661 $576

15.2 $137 $1001.8 $99 $505.8 $101 $59

100.0 $154 $78

Community Living SupportsCommunity Participation SupportsEmployment & Vocational SupportsGrandfathered FSPIBIRespiteSupport CoordinationTechnical Aids & Assistive DevicesTotal

% ofTotalSum Mean Median

PAYMENT

Exhibit 2 DSP active files receiving recurring monthlyfinancial support (30APR03)

cases was 68.7% while the mean behaviour score was 23.8/30. Overall levels of functioning are 38%high, 29% medium, 23% low and 10% very low.

Based on age, disability and level of functioning, there was little homogeneity between healthregions.

There are three main DSP service categories: 1) Adult Disability Supports (AD); 2) Child DisabilitySupports (CD); and Employment and Vocational Supports (EV). More than half the files (52%) wereAdult with another 23% being both Adult and Employment and Vocational, and 24% being Child.Only 2% of the files were strictly Employment and Vocational.

DSP financial supports are coded under approximately 48 line items. Based on the 773 recurringpayment files analysed, community access support is the most utilized support item, representing69% of all files. This is followed by social/recreational transportation appearing in 54% of all files,and extended respite appearing in 40% of all files. The size of payments being made rangedconsiderably both within and between regions. Overall, supervision was the largest expense item,representing 15% of the total monthly provincial expense at that point in time. The top five expenseitems from this summary were:

1. supervision (15%);2. personal care (12%);3. extended respite (10%);4. vocational alternative support (9%); and5. behavioural care (8%).

Individual support items are aggregated into major categories. Exhibit 2 below summarizes thesecategories as percent of total financial support at that point in time along with the mean and medianpayment being made.


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Low Medium High1 2 3 4 5

1. Program and Policy Design and Development1.1 A sound and accepted philosophic base exists.

1.2 Well thought out program rationale exists.

1.3Detailed and current statistical and marketplace information about people with disabilities exists to promote sound analysis and policy development and to accurately assess progress in meeting policy and programming goals.

1.4 There is meaningful involvement by the disability community in the development, implementation and direction of policies where they are affected by the outcome.

1.5 There is a cross-disability emphasis in policy and initiatives reflecting the inclusion of people with all types of disabilities.1.6 Initiatives are community-based and community-responsive.

1.7 Program coverage provides a full continuum of supports.

1.8 Persons with disabilities and/or their families will not be impoverished in order to access publically-funded supports.

1.9 Disability support includes the provision of counselling, guidance and planning in assisting people with disabilities and their families in making informed choices.

1.10 Conditions of adequate resources and capacity exist. The provision of services is fair in that a minimum baseline of support is provided.

1.11Where people with disabilities or their families are the purchasers of goods and services using publically-funded money, the funding is adequate to pay fair market value for the level of assistance required.

1.12 Services are based on need, appropriateness and value-for-money.

1.13 Key results indicators have been determined and are consistent with the program rationale.

2. Program Implementation

2.1 Government provides tangible evidence of leadership.

2.2A single point of entry exists for people with disabilities to receive information or supports. Communication strategies fully inform potential participants of the scope of support available.

2.3Mechanisms are in place to ensure consistency, collaboration and coordination across and within support providers, including provincial departments and agencies, to ensure that policy and initiatives interact for optimum impact and efficiency.

2.4 Program delivery staff are professionally competent and well-trained.

2.5 The needs of people with disabilities and their families are assessed in a professional, caring, equitable and timely manner.

2.6 An effective and equitable appeal process exists.

3. Program Performance and Evaluation

3.1 Adherence to policy and program guidelines is regularly monitored.

3.2 Policy and initiatives are modified as necessary based on regular monitoring of impacts and outcomes and program evaluations.

3.3 Service delivery performance is regularly monitored against established standards and both standards and performance are modified as necessary.

Key Success FactorsA benchmark framework for program success was developed by the consulting team which wasthen used to subjectively “score” the program to date. This framework is not unlike the disabilitylens concept. The disability lens is increasingly being used as a tool by policy and programdevelopers and analysts for identifying and clarifying issues affecting people with disabilities, andaddressing the impacts of policy and program decisions on the disability community. Scoring thefactors shows strength in the front-end “rhyme and reason” and implementation planning butweakness in areas of actual implementation.


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Aggregate Negative Response Aggregate Positive Response

-38.4

-26.2

-21.4

58.4

70.7

76.1

Barriers

Independence

Quality of Life

-40.0 -20.0 0.0 20.0 40.0 60.0 80.0 100.0

Key Conditions of Living Measures

DSP Telephone Survey

Exhibit 4

Participant SatisfactionBased upon results of a telephone survey among current and former DSP participants and/or anappropriate proxy, recipients of DSP supports are largely a satisfied clientele. Among currentparticipants and/or a proxy, 56% reported that the impact of DSP supports in the past year hadmade the participant’s life “better,” while 39% reported life to be “about the same.” Thirty-fourpercent (34%) reported that “important new supports” had been received in the past year, while27% reported that changes in the past year had made it easier for the participant do things like go towork, go shopping or attend social/recreational activities. Among this 27%, almost three-quartersattributed the changes to financial support received through the DSP.

To gain insight into the conditions of living being experienced by DSP participants, a set of surveyquestions were developed around three dimensions: quality of life, independence and barriers.Aggregate positive and negative responses to these questions are illustrated below, showing a clearpositive skew.

The importance of the Disability Support Program is reflected in the 61% of respondents (75%participants and 57% proxies) who said that it would be difficult for the participant to stay where heor she was presently living without the DSP supports that were being received.

In terms of DSP staff service quality, survey participants were generally very positive as thesummary of staff- and service-related questions in the chart on the next page shows.


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Yes No Other% % %

Does participant/proxy know who their DSW is 91.3 7.9 0.8

From among survey participants who responded YES:

Can participant/proxy talk to DSW whenever he/she needs 86.4 4.5 9.1

Does DSW understand participant's disability 81.9 5.1 13.0

Does DSW understand participant's needs 80.7 6.9 12.4

Does DSW do the things they say they will 81.7 5.1 13.2

Has DSW helped participant/proxy decide what supports and services to use 66.1 20.1 13.8

Has DSW helped participant feel better about being able to do things for himself/herself 57.5 23.4 19.1

Is participant/proxy happy overall with quality of help received from his/her DSW 80.1 8.3 11.6

Has particpant/proxy been unhappy in the past year about any DSP support 17.7 78.9 3.4

From among survey participants who responded YES:

Did participant tell DSW or anyone else 85.6 10.0 4.4

Was participant/proxy happy about how the complaint was fixed 20.8 75.3 3.9

Disability Support Program Telephone Survey

Disability Support Worker Service Quality Questions

Exhibit 5

Current Program Status Compared to IntentThe intent of the Disability Support Program is summarized as follows:

1. to make access to publically-funded disability support more equitable;2. to strengthen the social component (i.e. action planning) of disability support;3. to increase employment-based financial independence among people with disabilities;4. to make publicly-funded disability supports available to a broader base of Island

residents;5. to give disability support consumers more choice and purchasing control; and6. to achieve a holistic approach to service delivery with the aim of funding and providing

the mix of services that gives the best overall result.

Disability Support ProgramProgram Status Compared to Intent

1. To make access to publicly-funded disability support moreequitable

It could be argued that government has “shuffled the deck” with respect toequality of access with negligible net gain. Initiatives in this area wereconstrained by a strong corporate culture of cost containment/costavoidance and considerable opportunity appears to exist to enhanceequality of access to publicly-funded disability support.


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Disability Support ProgramProgram Status Compared to Intent

2. To strengthen the socialcomponent (i.e. action planning)of disability support.

The Disability Support Program is promoted as “a social program with afinancial component.” The reality of the situation is that the DSP is afinancial program with a social component. It would appear that amajority of applicants to the program have a clear idea of what theirwants/needs are and see little benefit in the social component. That beingsaid, there are sound examples of families who had a strong need forplanning support and clearly benefited through their contact with the DSP.

3. To increase employment-based financial independenceamong people with disabilities.

Employment-based financial independence is dependent upon anindividual obtaining and/or retaining permanent part-time or full-timeemployment. It would appear that some success has been achieved, butlargely among people with disabilities who are higher functioning.Whether this success can largely be attributed to the DSP or the federal-provincial cooperative Employment Assistance for People with Disabilities(EAPD) agreement is unclear. The vision of DSP developers to movepeople with disabilities off government income support to self-supportingfinancial independence does not appear to have happened to the degreeanticipated.

4. To make publicly-fundeddisability supports availableto a broader base of Islandresidents.

This has been an unquestionable success.

5. To give disability supportconsumers more choice andpurchasing control.

This has been a qualified success as success is partially tempered by:• a clear indication that a material segment of the disability community

does not want this responsibility; and• the fact that service resources and capacity are lacking in some

areas of need and in some regions of the province.

6. To achieve a holisticapproach to service deliverywith the aim of funding andproviding the mix of servicesthat gives the best overallresult.

In order for the Disability Support Program to be a centre-point fordisability support planning requires that a strong network of partnershipsexist both within the disability community and cross-government. It wouldbe anticipated that:• the assets that government has in established community service

providers would be leveraged;• the knowledge and experience of the disability community would be

incorporated into program service and policy monitoring andenhancement; and

• some type of formal protocol or framework would exist forcoordinating disability supports and a continuum of support acrossgovernment.

This does not exist with the Disability Support Program and servicedelivery appears to be largely centred on: 1. identify the need; and 2. fundthe need if eligible. It is material, however, that much of this situationappears to be consumer driven.


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ImplementationDevelopers of the Disability Support Program faced a considerable challenge integrating threedisparate programs into one new program with a new approach to service delivery requiring afundamentally new way of thinking. Pre-implementation was thoroughly planned but pre-implementation execution exhibited a notable weakness in the degree of inclusion of the disabilitycommunity in program development and in pre-implementation communication with the disabilitycommunity.

Given the number of case files requiring transition, the vagaries of the new program, and theobvious learning curve required, the implementation time frame was likely ambitious given theresources available. This contributed to the creation of initial case files and case management thatwere outside the vision of the program. Material implementation challenges include:

• service delivery inconsistency across the province in terms of assessment, policyinterpretation and support funding;

• a corporate culture of cost containment/cost avoidance which manifested itself in aconservative approach to service delivery; and

• community-based shortages in resources and capacity for certain types of disabilitysupports.

Fully understanding the seriousness of service delivery variances is difficult as no effective meansof benchmarking, monitoring and improving/correcting service delivery is in place.

Material weaknesses of program implementation include:• a lack of communication with the disability community and a failure to provide

adequate program information;• failure to engage the disability community in the review/modification/enhancement of

policy in a meaningful manner; and• failure to establish mechanisms to ensure consistency, collaboration and coordination

across and within support providers, including government.

AchievementsThe Disability Support Program has successfully established itself as a flexible, person-centred,needs-based program that is independent of income support programming. The program hasbroadened access to government-funded disability supports for Islanders and has undoubtedlyimproved quality of life and community participation for many.

EmploymentEmployment outcomes are unclear, partly because of the difficulty many people with disabilitieshave finding permanent full-time or part-time work as opposed to on-the-job-training experiencesor short-term work projects. It is also likely that some of the apparent successes through job creation


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partnerships would have occurred regardless of whether the DSP existed or not.

It is understood that to this point in time, specific outcomes with respect involving people withdisabilities in the labour market and moving people with disabilities off income support have notbeen achieved. From the DSP telephone survey, only one-third of the participants were reported ashaving had paid employment of any kind in the past year with 70% of this cohort (24% of all surveyrespondents) being reported as having regular paid employment. Among this regular paidemployment group, the mean number of hours worked “last week” was 15.

On a positive note, among those who had some type of paid employment in the past year, it wasreported that:

• 23% started paid employment because of supports received through the DSP;• 16% started better paying employment because of supports received through the DSP;

and• 18% started new paid employment that was more “fun” because of supports received

through the DSP.

Gaps in Program Access and ServiceNotable probable gaps in program access identified include:

• the model used to calculate “net income” which is not an accurate reflection of disabilitysupport need;

• the “18 to 24" age parameter for the inclusion of parental/guardian income for incometesting which does not exhibit strongly defensible rationale;

• family relationships for the inclusion of family income for income testing, particularlywith respect to guardians, but also in regard to a married or common law spouse who isnot a parent of the person with a disability;

• the inequality of grandfathering supports while new applicants are denied access tothese supports without access to any alternative source of service;

• the lack of a vision and action plan that will see equality of access to publicly-fundeddisability supports for all people with disabilities; and

• the review process which does not adequately represent the interests of DSP applicantsor participants.

Notable gaps in program service include:• lifetime government funding ceilings;• early intervention supports for children;• disability supports for the more severely disabled, particularly children;• a system framework that is responsive to a continuum of planning and supports as

individuals transition from one stage of life to another;• respite; and


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• transportation, particularly employment-related;

Cost-EffectivenessAt this point in time it is very difficult to measure the cost-effectiveness of the Disability SupportProgram. This is largely due to the lack of quantitative benchmarks for measuring cost-effectiveness. The challenge to measuring cost-effectiveness is compounded by the limitedknowledge that government has of the overall disability support needs of the disability communityin Prince Edward Island and there is a fundamental need to establish quantitative researchprotocols for measuring outside the DSP “box.”

Through this evaluation process, initiatives such as the telephone survey have explored ways ofmeasuring dimensions such as independence, barriers, quality of life and program satisfactionamong DSP participants. This would be a good starting point for establishing benchmarks forfuture measurements. Exhibit 59 on page 80 provides a single-page comparative summary by healthregion for a number of participant profile, satisfaction and financial activities examined during thisevaluation.

Program RelevanceThe need for an initiative such as the Disability Support Program is strongly supported by theevaluation. As it exists, however, it is an innovative financial service with a social planningcomponent and not the reverse situation that was envisioned. However, this is not necessarily badin and of itself as there is an obvious community need and the effectiveness and impact of theprogram could be enhanced noticeably with some policy and service delivery adjustments andadditional resources.

If, however, the Disability Support Program is to be a holistic centre-point for disability supportplanning, then there is likely a much more challenging task ahead. The reasoning for this is that anall-encompassing provincial policy framework is needed to:

• establish responsibility, authority and accountability that ensures a coordinatedapproach in the development of disability supported-related policies, legislation,programs and services; and

• ensure the cohesive and seamless delivery of disability-related programs to people withdisabilities.

Through this central point, effective cross-government personalized planning can then be deliveredand supports coordinated such that people with disabilities can reach their full potential at allstages of their life. The Government of Prince Edward Island has exhibited innovation andleadership in establishing the Disability Support Program. It may wish to continue along this pathby taking on this challenge.


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1. Introduction

1.1 Purpose and Organization of this ReportResponding to an open competitive call for proposals (PEIGOV RFP#223), Baker Consulting Inc., inassociation with LexEcon Consulting, was awarded a contract by the Province of Prince EdwardIsland’s Department of Health and Social Services (DHSS) to conduct a formative evaluation of theprovince’s Disability Support Program (DSP). For this assignment, the consulting team reported tothe PEI Disability Support Program Evaluation Management Team, consisting of:

• Brian BertelsenCoordinator of Disability SupportsSocial Policy Development, Department of Health and Social Services

• Bob CreedManager of Disability Support Programs and Employment Enhancement ProgramsQueens Health Region

• Jean FallisDirector of Social Supports and Senior ServicesSocial Policy Development, Department of Health and Social Services

• Bethany MacKayCase Management SupervisorChild and Family Services, West Prince Health

• Olive MoaseHealth System Researcher, Evaluation ServicesSocial Policy Development, Department of Health and Social Services

• Anne-Marie SmithManager of Strategic Planning & CommunicationsCorporate Services, Department of Health and Social Services

• Jill WakelinDisability Supports Client Services OfficerDisability Supports and Services, Social Policy Development, Department of Health and SocialServices

Within the context of this assignment, an evaluation can be described in general terms as a processwhereby judgement is made about the impact, value, worth or merit of a program, activity, productor entity through systematic investigation and analysis. A formative evaluation is a “project inprogress” snapshot evaluation designed to inform stakeholders of strengths and weaknesses at a


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1 Has the Disability Support Program been implemented as intended?

2Are the Disability Support Program’s core activities (case planning, referrals and financial support) and types of services consistent with the program’s mandate?

3 What are the types and profiles of DSP interventions?

4 What is the profile of DSP participants?

5What impact has the separation of disability supports from income support programming had upon employment barriers for DSP participants?

6 What impact have DSP interventions had upon participant employment and employability by type of intervention and disability?

7 What impact have DSP interventions had upon participant income and participant dependence upon welfare assistance support?

8 What impact have DSP child disability supports had upon families with extraordinary child-rearing needs?

9 What impact have DSP interventions had in enhancing participant independence and improving their quality of life?

10 How satisfied are DSP participants with service delivery including reasons for dissatisfaction?

11 How effective has the support planning component of the DSP been in establishing partnerships with other disability support agencies?

12 Has the DSP produced any unintended impacts and effects?

13 Under the DSP, are there gaps in service delivery including eligible persons not served, waiting lists and lack of access to interventions?

14What key performance indicators would be useful for ongoing assessment of the efficiency and effectiveness of the Disability Support Program?

Program and Participant Profile

Implementation

Impacts, Effects and Cost-Effectiveness

Prince Edward Island Disability Support Program Formative Evaluation

Evaluation Primary Questions

Exhibit 6

specific point in time with a goal of identifying opportunities for improving efficiency andeffectiveness.

The Disability Support Program has not been evaluated since its official launch in October, 2001.The program is considered by program management to be in a formative stage at this point in timeand typical areas of evaluation interest include:

• program rationale and implementation;• participant profiles; and• initial impacts, effects and cost-effectiveness.

The formative evaluation of the Disability Support Program was centred on 14 primary questionsdeveloped by key program stakeholders. These questions are summarized below.


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This report is organized as follows:• Section 1: Introduction provides background information on: a) the nature of the

assignment; b) the DSP, its intent, goals and objectives; and c) the scope of the evaluation,the methodological approach and limitations encountered.

• Section 2: Trends in Disability Support Initiatives is a summary report on a literature reviewconducted by DHSS staff and is intended to bring to the evaluation a global perspective ofcurrent practices in government-based disability support programming.

• Section 3: Participant and Program Activity Profile provides readers with a statisticaldescriptive analysis of DSP participants who were receiving recurring monthly financialassistance as at 30 April 2003.

• Section 4: Findings and Discussion reports on the findings of the evaluation through pre-implementation planning, implementation and the current status of a number of programcomponents.

• Section 5: Program Impacts, Effects and Cost-Effectiveness draws summary conclusionsabout the success of the program to date in terms of impact, outcomes, program satisfactionamong the disability community and value-for-money.

• Section 6: Summary Observations summarizes key program accomplishments to this pointin time along with program strengths and weaknesses.

1.2 Program Description and Context1.2.1 Program DescriptionThe Disability Support Program is described in policy as:

“...a program designed to assist Islanders who have a qualifying disability overcomebarriers, to attain a satisfactory quality of life, and to strive to achieve financialindependence...The DSP may assist children and youth with disabilities by offeringsupport to them and their parent(s)/guardian(s)...The DSP is a social program witha financial component. The program offers support planning assistance to helpdevelop a plan of action and to help determine supports that are necessary. Theprogram may also provide referrals to other agencies where complimentary servicesmay be obtained.”

Disability Support Program policy: Section 1.1: Program Description

Other program descriptions used by government can be found in Appendix A.


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1.2.2 IntentGovernment’s intent in developing and implementing the Disability Support Program is notcrystalized in any single program document. Several pieces of communication, however, provideinsight into government’s intent which can then be summarized. The pieces of communicationinclude the following:

“...by providing disability supports to citizens who have a qualifying physical orintellectual disability that are totally separate from income support programming....provides disability supports for people with physical and intellectual disabilitieswhile still allowing these individuals to earn income...Persons with disabilities andtheir families will be fully involved and central to the decision making process. It isour intent to provide a range of disability related supports and services, based onthe needs of the individual rather than on entitlement.”

“Ministerial Statement: Disability Support Program.” Hon. Jamie Ballem. May 3,2001.

“In the past, Islanders received disability supports through several programs. Thelevel of support was sometimes different from program to program, or region toregion. People who received support through the Welfare Assistance Program couldreceive less support if they became employed. And often, there was not enoughflexibility in the programs to respond to a person’s individual needs and help themreach their full potential.”

“Questions and Answers on the New Disability Support Program.” October, 2001.

“Government is now developing a Provincial Disability Supports Program toimprove access to disability supports, provide more assistance with disability costs,and promote equitable access outside of income support programming. Enhancedassistance for children will focus on early interventions to help in overcomingbarriers and to ensure that children with disabilities participate fully in PrinceEdward Island society.”

“Prince Edward Island Disability Support Program Communication Update #1.”March, 2001.

“• Program to be needs based vs. entitlement • Program to have parameters and an expectation of contribution from individuals

and/or families • Program to be a social program with a financial component ($3000. month maximum) • Program to provide flexibility • Program to separate disability supports from income support programming”

Presentation to the Federal, Provincial and Territorial Ministers of Social ServicesMeeting. Moncton: November, 2002.


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“This is an opportunity we have to provide support for folks that haven’t had it inthe past. It’s an encouragement for folks that haven’t been able to participate in theworkforce.”

Hon. Jamie Ballem quoted in Program offers more financial independence for disabled. TheGuardian. Monday, May 7, 2001: A3.

From these statements, the intent of the program can be summarized as:1. to make access to publicly-funded disability support more equitable;2. to strengthen the social component (i.e. action planning) of disability support;3. to increase employment-based financial independence among people with disabilities;4. to make publicly-funded disability supports available to a broader base of Island

residents;5. to give disability support consumers more choice and purchasing control; and6. to achieve a holistic approach to service delivery with the aim of funding and providing

the mix of services that gives the best overall result.

1.2.3 Goals and ObjectivesP GoalsThe goals of the Disability Support Program have been taken from PEI Disability Support Program:Staff Familiarization Sessions (September, 2001):

• To promote opportunities which will allow persons with a disability to achieve their desiredlevel of independence.

• To work towards enhancing quality of life.

P ObjectivesThe core objectives of the Disability Support Program are found in policy:

“a) Child Disability Supports – To provide a range of disability related supports andservices to families who have children with qualifying disabilities, according totheir individual needs, to assist with extraordinary child-rearing support needsdirectly related to their disability.

b) Adult Disability Supports – To provide a range of disability related supports andservices to people with qualifying disabilities according to their individual needs andrequirements to help them achieve a higher level of independence.

c) Employment and Vocational Supports – To provide a flexible range of measures thatinclude assessment, training, skills development and pre-employment in anindividually-focussed program which will result in competitive, long-termemployment, or supported employment, if appropriate.”

Disability Support Program policy: Section 1.4: Program Objectives


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Minister of Health andSocial Services

DHSSDisability Support Program

Administration

Health Regions

Senior Managementand Income

Support Administration

Disability Support ProgramSupervisor

Disability Support Worker(DSW)

Disability SupportAdministrator

Exhibit 7 Disability Support Program organizational structure

In addition, the document review identified the following targeted program outcomes:“• Establish baseline data which is specific to Prince Edward Island... • Reduce the number of persons with a disability receiving income support through the

Welfare Assistance Program by 10% in year one and 15% by the end of year three. • Have a formal case plan for each program participant within the first year. • Increase participation in vocational and employment preparation training by 50% in the

first year. • Increase employment placements and opportunities by 20% in the first year.”

“A Proposal for a Prince Edward Island Disability Support Program.” Department ofHealth and Social Services.

1.3 Program Structure, Resources and Components1.3.1 Program StructureThe organizational structure of the Disability Support Program is illustrated below. Designed by theDepartment of Health and Social Services, responsibility for the program, including policy, restswith the Minister of Health and Social Services.

Funded by the Province of PrinceEdward Island, program delivery isthe responsibility of the fourprovincial health regions througheach region’s Income Supportdivision. A Disability SupportProgram unit at the Department ofHealth and Social Services providespolicy, case management andadministration support to theregions.

At the regional level, the DSP isdelivered by a disability supportworker, supported by a disabilitysupport administrator. Bothpositions report to a DSP supervisor.The disability support worker isresponsible for an assigned caseload(intake and case management) while the administrator provides administrative support related tocase management and is frequently the front line contact for information inquiries from the public.


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SOURCES OF FUNDINGProvince of Prince Edward Island 5,840,297$ 84.3% 6,882,600$ 86.1%Federal government 625,000$ 9.0% 625,000$ 7.8%Client contributions 462,780$ 6.7% 485,919$ 6.1%TOTAL SOURCES OF FUNDING 6,928,077$ 100.0% 7,993,519$ 100.0%

USES OF FUNDING1. Goods and Services

West Prince 636,877$ 9.2% 1,012,900$ 12.7%East Prince 1,740,879$ 25.1% 1,822,200$ 22.8%

Queens 2,302,869$ 33.2% 2,624,800$ 32.8%Kings 640,736$ 9.2% 680,000$ 8.5%

Client contributions 462,780$ 6.7% 485,919$ 6.1%Total Goods and Services 5,784,141$ 83.5% 6,625,819$ 82.9%

2. AdministrationDHSS 237,907$ 3.4% 382,900$ 4.8%

West Prince 230,544$ 3.3% 253,600$ 3.2%East Prince 216,701$ 3.1% 212,100$ 2.7%

Queens 396,387$ 5.7% 369,800$ 4.6%Kings 62,397$ 0.9% 149,300$ 1.9%

Total Administration 1,143,936$ 16.5% 1,367,700$ 17.1%

TOTAL USES OF FUNDING 6,928,077$ 100.0% 7,993,519$ 100.0%

Disability Support ProgramSources and Uses of Funding

Actual 2002 - 2003 Budget 2003 - 2004

Exhibit 9 Source: Department of Health and Social Services

Disability Support ProgramDirect Program Staffing (Full-Time Equivalent Positions)

DHSS West Prince East Prince Queens KingsProvincial Coordinator 1.00Disability Supports Client Services Officer 1.00Preschool IBI Services 3.00Supervisor 0.50 0.50 0.50 0.50Disability Support Worker 3.20 3.50 7.00 3.25Disability Support Admin. Support 1.00 0.50 1.00 1.00 1.00Total 6.00 4.20 5.00 8.50 4.75

Exhibit 8 Source: Department of Health and Social Services

1.3.2 ResourcesExhibit 8 below summarizes direct program staffing associated with the DSP as at July, 2003. Intotal, there are 28.45 full-time equivalent (FTE) staff currently assigned to the program.

Exhibit 9 summarizes actual expenditures for fiscal 2002 - 2003 and the 2003 - 2004 budget. A moredetailed summary of 2002 - 2003 can be found in Appendix B.


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1.3.3 Program ComponentsPrimary principles identified in policy establish a context for the delivery of program componentsand the program overall:

“a) Every person with a disability has the right to seek support in attempting toovercome barriers, to attain a satisfactory quality of life, and to achievefinancial independence.

b) The dignity and value of the person should not be compromised in theindividual’s seeking of services.

c) If a person with a disability earns an income they may still qualify for assistancethrough this program.

d) Most individuals prefer to be self-sufficient rather than dependent, and servicesprovided should be directed toward that end.

e) To facilitate growth toward independence, Disability Support Workers must avoidtaking on tasks that can be completed by the individual and/or family.

f) Generally, families are open and prepared to help other family members, and serviceintervention should not erode this traditional practice.

g) Individual persons or families usually know what their issues are and wish to bedirectly involved in making decisions on how best to resolve those issues.

h) Disability Support Workers are expected to work with the individual and/or family todevelop a support plan with goals and actions that outlines the supports necessary toachieve the goals.

i) In seeking support, the individual and/or family has the responsibility to complywith the expectations and obligations of the service process.

j) Information obtained by the Health and Social Services System while providingservices is confidential and may be shared only with other government departmentsor private agencies when necessary to expedite required or requested services onlywhen permission has been obtained (Refer to Section 3.0, Confidentiality).

k) The quality with which any service is rendered is contingent upon the attitude, lifeexperience, training and confidence of those staff who are the primary deliverers ofthe service.

l) Public and community perceptions and views with respect to any public program arepowerful influences; hence a sensitivity to these perceptions is necessary.

m) Resources (budget allocations, staff) to deliver the program are limited; hence, inorder to ensure that those in need are assisted, program management must managethe program efficiently.”

Disability Support Program policy: Section 1.3: Primary Principles

Building on these primary principles, Exhibit 10 on the next page illustrates the four majorcomponents of the Disability Support Program:

1. a disability assessment;2. support planning;


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Disability Assessment

Financial Assessment(if required)

• Behaviour/Psychosocial• Function

• Independent activities of daily living• Nutrition• Safety

• Community integration

Support Planning

• Identify goals• Identify and prioritize disabilityissues/needs to achieve goals• Identify support-specific needs

• Identify support providers

• Determine cost of DSP-eligible supports• Determine maximum level of

funding support• Calculate client contribution

Action Plan• Complete action plan

• Identify support coordinator• Financial contract (if required)• Record of supports used

MinimumAnnualReview

• Technical aids and assistive devices• Community participation supports

• Community living supports• Respite

• Modifications• IBI

Exhibit 10

3. a financial assessment, if required; and4. development of an action plan.

1. Disability AssessmentProgram staff utilize a screening tool to provide consistency in understanding and assessing anindividual’s disability and level of functioning. Based on self-disclosed information andobservation, the screening tool measures behaviour/psychosocial function, physical function,independent activities of daily living capability, nutrition, safety and community integration.

2. Support PlanningThe support planning component establishes a planning framework for the individual. As part ofthis component, individual and/or family goals are identified, disability issues/needs associatedwith achieving these goals are identified and prioritized, support-specific needs are identified, andsupport providers are identified.

3. Financial AssessmentThe provincial government may act as funder of last resort under the Disability Support Programfor eligible goods and services in one of six broad areas:

1. technical aids and assistive devices;2. community participation supports;3. community living supports;4. respite;5. home, vehicle and workplace modifications; and


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6. Intensive Behavioural Intervention (IBI).

If eligible DSP-funded goods and services are required, a financial assessment is conducted whichincludes:

a) determination of the maximum amount of funding support available based upon theparticipant’s overall level of functioning; and

b) the calculation of a client contribution amount based upon an income test.

4. Action PlanBuilding on the disability assessment, support planning and the financial assessment, if required,the last component of the DSP is an action plan. This plan is a working document that identifies thepathways to achieving identified goals, including:

a) action steps;b) responsibility for each action step;c) time frames; andd) expected outcomes.

The action plan process includes the identification of a support coordinator, who may be one or acombination of: the participant; a direct or extended family member; a friend; a service provider; ora disability support worker. As the title indicates, the primary role of the support coordinator is toorganize and coordinate the timing and delivery of required goods and services. Where a monthlyfinancial benefit is paid by the DSP, the support coordinator may also be responsible for thepayment of purchased goods and services.

If funding is provided under the DSP, the participant is required to enter into a financial contract(Individual Support Agreement) with the respective health region. While the keeping of receipts isnot a requirement under program policy for financial accountability, participants receiving fundingare expected to maintain a Record of Supports Used. This form is used by participants and/or adesignate to track the timing, services, service providers and costs of goods and services purchasedwith government funding.

1.4 Scope of the EvaluationOfficially launched in October, 2001, this is the first evaluation of the Disability Support Program.While the program is considered to be fully operational, program management considers theimplementation to be formative in nature and consequently are seeking to have a formativeevaluation completed.

The formative evaluation issues and questions cover the areas of program rationale andimplementation, program and participant profiles, and initial impacts, effects and cost-effectiveness. Issues of employment/employability and quality of life are of particular interest togovernment.


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1.5 Methodology and LimitationsThis report presents findings arrived at from multiple lines of evidence. A summary of eachmethodology used is given below. The primary evaluation questions, planned methodologicalapproaches, and analysis and reporting processes are detailed in a pre-evaluation technical reportthat was prepared entitled “PEI Disability Support Program Formative Evaluation: TechnicalReport.”

In executing this formative evaluation, two notable challenges were encountered by the consultingteam:

1. access to reliable pre- and post-DSP socio-demographic and funding data on whichcomparative analysis could be done; and

2. access to reliable socio-demographic and funding data on DSP participants – bothcurrent and former – on which comparative analysis could be done.

This situation was largely due to the hardware and software technology used to store and managesocial services data, including pre-DSP and current DSP records. This technology is very dated andgovernment is presently in the process of replacing this technology with a new databasemanagement system.

Limitations of the existing technology, including a lack of specialized technical support, make itdifficult to define and export data. The situation was compounded by the fact that DSP records foreach participant are a combination of electronic files which reside on the government mainframe,and paper files which reside in the health regions. In the end, reliable exported data for analysispurposes was limited to current DSP participants receiving a monthly support payment.

A secondary challenge was inconsistencies in the coding of certain record fields, some of whichmade creating unique record identifiers on exported data difficult for survey and analysis purposes.Others, such as fields associated with the status of a file presented some difficulties in beingthoroughly accurate “slotting” contacts for surveying that was conducted.

Quantitative data was only used for inclusion in this report after the accuracy and integrity of thedata was confirmed using data screening and testing techniques.

Finally, as there is no detailed data available about all people with disabilities in Prince EdwardIsland and their disability support needs, it is difficult to truly understand the magnitude of needwithin the province as a whole.

P Disability Support Worker and Disability Support Administrator Focus GroupsSeparate focus groups were conducted with disability support workers (two sessions) and disabilitysupport administrators (one session).


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P Literature ReviewA literature review was conducted by DHSS staff with the intent of bringing to the evaluation aglobal perspective of current practices in government-based disability support programming.Section 2: Trends in Disability Support Initiatives is authored by department staff and reports on theliterature review findings.

P Case File AuditA review of 30 DSP case files was conducted by DHSS DSP administrative staff. Reviewers visitedeach of five health region offices (O’Leary, Summerside, Charlottetown, Montague and Souris) withsix case file numbers covering adult, child and employment/vocation cases that were randomlyselected in advance. Regional office staff had no prior knowledge of the cases selected prior to thearrival of the reviewer on-site.

P Disability Support Organization Roundtable SessionsFour roundtable sessions (West Prince, East Prince, Charlottetown, Kings) were held withrepresentatives of the disability support community including NGOs and volunteer organizationsin Prince Edward Island.

P Public Input SessionsFour public input sessions (West Prince, East Prince, Charlottetown, Kings) were held providingthe public at large with the opportunity to express opinions about the Disability Support Program.

P Persons with Disabilities Focus GroupsTwo focus groups (Summerside, Charlottetown) were conducted with persons with disabilities.

P Expert and Key Informant InterviewsA total of 36 expert and key informant interviews were conducted with DHSS and health regionDSP program administrators, DHSS and health region management, health care providers, andrepresentatives of the disability support community. Several interviews were also conducted withparents of children with disabilities who wished to remain anonymous. A list of the individualsinterviewed can be found in Appendix D. These interviews were in-depth, lasting, on average,slightly less than two hours each.

P Document ReviewA review of DHSS documents pertaining to the development and implementation of the DisabilitySupport Program was conducted. A listing of the documents reviewed can be found in AppendixC.

P Quantitative Telephone SurveyingQuantitative telephone surveying was conducted among:

• all DSP participants and/or a proxy with an active DSP file;


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• all former DSP participants and/or a proxy where service was completed and the fileclosed;

• all individuals who applied to the DSP and were deemed to be ineligible for financial orother reasons; and

• all individuals where a partial DSP application or file was opened but never completedor an application was approved but service was never accessed.

A detailed analysis of the telephone survey data can be found in a separate report, “Prince EdwardIsland Disability Support Program: Telephone Survey.”

P Administrative Data AnalysisDigital socio-demographic data of current and former DSP participants were assembled andanalysed to create a DSP participant profile.


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2. Trends in Disability Support InitiativesAuthored by Department of Health and Social Services staff

2.1 BackgroundThe Prince Edward Island Disability Support Program (DSP) has removed disability supports fromincome support programming. PEI is the first jurisdiction in Canada to implement this newapproach consistent with In Unison: A Canadian Approach to Disability Issues(Federal/Provincial/Territorial Ministers of Social Services, 1998) which stated a policy direction asfollows:

Income programs that separate access to disability supports from eligibility for financial assistance. Other program approaches that are currently in operation across Canada offer either generalincome support for the public including persons with disabilities, or income support that is solelyfor persons with qualifying disabilities. It was at the June 1996 First Ministers Meeting that personswith disabilities were identified as a collective priority for social policy renewal.

DSP is only one of many disability support programs, services and funding that is available toIslanders. Examples include:

• Canada Pension Plan disability benefits; • Employment Insurance sickness benefit; • Canada Study grants for students with disabilities; • Opportunities Fund;• Disability component of the Aboriginal HRDC strategy;• Canada Pension Plan - Disability Vocational Rehabilitation Program; • Workplace equity programs; • Disability component of the Social Development Partnerships Program; • Participation and Activity Limitation Survey; • Disability Tax Credit (Canada Customs and Revenue Agency); • Employment equity ( Public Service Commission/Treasury Board); • Workers' Compensation;• Long-term disability insurance;• Motor vehicle no-fault accident benefits;• Personal injury awards and settlements;• Income tax credits;• Provincial programs (e.g. early intervention, home care, education supports);• Non governmental organizations.


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Exhibit 11

2.2 The VisionChoice and Opportunity (1994-1999) - This program was a strategic initiative for social policy reformconcerning people with intellectual disabilities which occurred from 1994 -1999. It consisted of apartnership between the Canadian Association for Community Living, PEI Association forCommunity Living, Government of Canada and the Province of Prince Edward Island. Thisinitiative included extensive consultations with the community and key stakeholders, thecompletion of comprehensive research and the trial of innovative policies and disability supports.

In Unison (1998) represented a shift in the social policy direction for persons with disabilities inaccordance with the social policy trends seen in Exhibit 11.

The DSP has attempted to adhere to the national direction outlined within In Unison (1998) wherethe following twelve items summarize the policy directions regarding full citizenship, disabilitysupports and employment.

1. Polices that promote access to generic programs and services for all Canadians, includingpersons with disabilities.

2. Policies and programs that promote greater access to supports.

3. Policies that separate access to supports from eligibility for income and other programs.

4. More consumer control, flexibility and responsiveness in the provision of disabilitysupports.


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5. Widespread understanding and application of the concept of accommodation.

6. Measures that provide more assistance to offset work-related disability costs.

7. Greater support for community economic development and self-employment for personswith disabilities.

8. Enhanced employability through better access to education training and transitionmechanisms.

9. Income programs that reduce financial disincentives to work.

10. Income programs that separate access to disability supports from eligibility for financialassistance.

11. Improved coordination of assessment procedures and rehabilitation between incomeprograms.

12. Income programs that continue to ensure financial assistance when labour marketparticipation is interrupted or not possible.

In Unison 2000 Persons with Disabilities in Canada - (F/P/T Ministers Responsible for SocialServices). This report built on the In Unison (1998) framework and provided a broad view of howadults with disabilities are faring in comparison with those without disabilities. It providedexamples of effective practices implemented in Canada, emphasizing flexible policy solutions tomeet individualized needs.

2.3 Federal Role in Disability The federal government performs six roles in disability policy and supports

1. financing to P/T governments through transfer payments;2. income and tax benefits to individuals and families;3. capacity building of disability organizations;4. research, evaluation and innovation;5. rule development and right definition; and6. service provision and delivery (Source: Prince, 2002, p. 4).

The provision of funds to provincial and territorial governments or individuals and families occursthrough transfer payments such as the Canada Health and Social Transfer (CHST), Early ChildhoodDevelopment (ECD), Labour Market Development Agreements (LMDA), and EmployabilityAssistance for Persons with Disabilities (EAPD).

Included are supports transferred to individuals and families such as Employment Insurance (EI),


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tax benefits and supports delivered directly to Aboriginal Canadians on reserve. Economically, theintergovernmental grants: 1) fill financial gaps between the federal funding responsibilities andtaxing powers of the provinces and territories; and 2) ensure fiscal equity through equalization ofthe capacity of governments in the union. Socially, the federal spending power adapts public policyto changing situations and values, or in SUFA terms the federal transfers “support the delivery ofsocial programs and services by provinces and territories in order to promote equality of opportunity andmobility for all Canadians and to pursue Canada-wide objectives” (Prince, 2002, p. 4). The federalgovernment also participates with the provinces in funding national disability organizations,applied research, and multilateral and bilateral processes consistent with the Social UnionFramework Agreement.

2.4 Definition of DisabilityOver time the definition of “disability” has changed. The meaning of the word has progressed fromunscientific to medical, to social, to rights, and more recently, to a bio-psycho-social definition witha strong environmental component (Brown, 2001). At present the trend is for sources to support theidea of incorporating the “environmental conditions/circumstances” into the definition ofdisability. In Canada, there are many disability support programs each defining disabilitydifferently for the parameters of the program. For example, various federal government programssuch as Canada Pension Plan (CPP) Disability Benefits, Disability Tax Credit, Employment Equity,and Veterans Disability Pension each have a different definition of disability depending on thepurpose and provisions of the specific program. Currently, the CPP Disability Benefits Program isthe largest benefit program in Canada with almost 300,000 participants and approximately 70,000applicants annually (Standing Committee on Human Resources Development and the Status ofPersons with Disabilities, 2003, Chapter 1, p. 1/10). It has been said that multiple definitions aredesirable if social policy categories are to be true to their purposes. “Social policy categories which arenot sufficiently relevant are unsustainable” because they may exclude persons who should be included,or include persons who should be excluded (Mabbett, 2003). The DSP has also established its’ owneligibility parameters not unlike those of other disability support programs.

2.5 Types of Disability SupportsEmerging “Supports Paradigm” - It has been suggested that a “supports paradigm” has been evolvingthrough the stages of normalization (1970s), community-based involvement (1980s), and now,quality of life (1990s). In other words, the paradigm shift has been from a focus on deficits to a focuson self-determination and inclusion. In the 2000s disability support workers work in partnership tohelp determine what supports will help people participate in their community with meaningfulsocial roles that will allow them to experience greater fulfillment (Thompson et. al., 2002, p. 391).

Case Planning - To move the menu of supports from the program to the person a planning process isused to 1) identify participant’s desired life experiences and goals, 2) determine the participant’sintensity of need across their range of circumstances, 3) develop an individualized support plan, 4)


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monitor and assess outcomes, and 5) revise the support plan on a schedule, or in response tochanged circumstances. Contemporary principles for support planning include 1) tailoring supportsto individual needs and preferences, 2) flexibility in provision across varies circumstances in theperson’s life, 3) allowing for individual participants to have supports that are especially importantto them, 4) scheduling systematic assessments of support needs to guide revision of support plans,and 5) considering relevant factors “close to a person” such as his/her ethnicity, culture, language,communication mode, and behaviour characteristics (Thompson, 2002, p. 390-405).

Supports Associated with Disability Programming - DSP recognizes the definitions of disabilitysupports as proposed by Caledon Institute of Public Policy and Roeher Institute. The CaledonInstitute of Public Policy (Torjman, 2000, pp. 3-5) indicates that personal supports “refer to a rangeof goods and services that help offset the effects of a disabling condition”. Personal supports can beclassified into three streams: 1) technical aids and equipment, 2) personal services, and 3)brokerage. The Roeher Institute defined disability supports similarly saying:

“Any good or service which assists a person with a disability in overcoming barriers tocarrying out every day activities or to social, political and cultural activities and economicparticipation. In this definition, there is no fixed set of disability-related goods and services,rather it is open ended. A good or a service becomes "disability-related" when it is used toassist a person or persons in overcoming barriers associated with a disabling condition”(Roeher Institute, 2002).

“[A]ny good, service or environmental adaptation that assists persons with disabilities toovercome limitations to carrying out activities of daily living and in participating in the social,economic, political and cultural life of the community a) provided to individuals and theirfamilies and b) delivered to people with disabilities as a group through broad communitymeasures” (The Canadian Association for Community Living and the Council of Canadianswith Disabilities, 2003).

The intent of the DSP is to reflect the vision of these two well-known policy-related organizationsand offer a range of supports that include respite, community living, community participationsupports, technical aids and assistive devices and planning. The particular “mix” of disabilitysupports required by each program participant reflects their individual needs as determined duringthe planning with individuals and families.

The individualized case planning approach allows referrals to programs and/or services offered bythe sponsor department, Health and Social Services. These referral programs include Acute Care,Addiction Services, Adoption Services, Ambulance Services, Child Protection, Community CareFacilities, Dental Public Health, Diabetes, Dialysis, Drug Cost Assistance Programs, EnvironmentalHealth, Family Housing, Financial Assistance, Foster Care Services, Health Information ResourceCenter, Home Care, Job Creation/Employment Enhancement, Long Term Care, Mental Health


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Services, Out-of-Province Hospital Services, Out-of-Province Physician Services, PhysicianServices, and Seniors Housing (PEI Health and Social Services Annual Report, 2002, p. 55). Clearly,these Health and Social Services programs offered in combination with programs of otherprovincial government departments and federal government departments, private companies, andnon-government organizations create a wide array of essential supports that Islanders withdisabilities can access regardless of age or location.

2.6 PEI PALS Disability StatisticsDisability can occur among people of all ages,sexes, incomes, races, etc. Disability is more closelyassociated with some demographic characteristicsthan others.

Age - The prevalence of disability increases withage due to injury, chronic disease, aging ofpopulation, and poverty.

• Among persons under 15 years, 15-64 years, and 65 and over years the percentage ofpersons estimated to have a disability is 3.5%, 11.8% and 44.4% of the general population,respectively.

• Almost 90% of the population is disability-free until the middle years (45-64 years) whenprevalence increases progressively.

• The increase during the middle years reveals a PEI trend that is similar to the Canada trendbut with PEI figures that are 3-4% higher than Canada figures.

• More than one-half of seniors age 75 and over have one or more disabilities whether theylive in PEI or Canada.

Sex/Gender - The prevalence of disability is slightly higher among males than females according tothe recent PALS which is formally termed the Participation and Activity Limitation Survey(Statistics Canada, 2001).

• 4% of males and 2.5% of females age 0-14 years live with a disability.

• Yet, 9.4% of males and 10.4% of females age 15-64 years live with a disability, so that themale prevalence doubles from youth to adulthood while the female rate quadruples in thesame age range.

• With 38.5% of males and 42.0% of females age 65+ years having a disability the prevalenceof disability for each sex quadruples from adult years to senior years.

The prevalence of disability in Canada was12.4% and on PEI was 14.3% with therange extending from 8.4% (Quebec) to17.1% (Nova Scotia). 14.3% Islanders was18,970 persons. Source: PALS, 2001.


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Employment - According to PALS (2001), the gender gap in employment narrowed between 1986and 1991. By 1991, youth age 15-24 years had similar prevalence rates for disability with thewomen’s rate being 96.1% that of the men’s rate. In contrast, among age 55-64 year-olds, the femaleparticipation rate was only 47.4% that of the male rate. Analyses of Welfare Incomes from theNational Council of Welfare for the year 2000-2001 which were reported by the Canadian Councilon Social Development (2002) showed that on PEI a person with a disability with a welfare incomeattained 55% of the poverty line (range, low of 40% in Alberta and high of 62% Ontario). In thesame study, a single employable person attained only 36% while single parent with one child andcouple with two children attained 62% and 64%, respectively, if living on PEI.

Education - Educational attainment is one determinant of employability. Among adults 20-64 yearsof age who responded to the 1996 census, the high school, university, and trade/community schoolcompletion rates were 33%, 7%, and 26% for persons with disabilities compared to 50%, 17% and32%, respectively, for persons without disabilities. Among the aboriginal population, 23% withdisabilities and 26% without disabilities completed trade school while 2% with disabilities and 4%without disabilities completed university (Statistics Canada, 1996). Higher levels of education aregenerally associated with higher wages whether or not a disability is present. And, at any level ofeducation wages tend to be lower for persons with disabilities than persons without disabilities(Canadian Council on Social Development, 2002). Among Islanders with disabilities 22% havecompleted Grade 9 or less, 44% have completed Grade 12 with or without a diploma, and theremaining 34% have completed a trade certificates and university degree - with an even split betweenthe two groups (Dynamic Research, 2000).

Income and Poverty - Employment affects income and poverty. Among persons with disabilitiesand age 15 years and over ~25% of women were poor compared to ~18% of their male counterparts(HALS, 1991). For persons without disabilities the comparable rates were almost one-half as high --~14% for women and ~11% for men (HALS, 1991). However, the severity of the disability plays alarge role in determining these figures for adults with the respective percentage who are pooramong persons with severe, moderate, and mild disabilities being 30.3%, 23.7% and 17.7%,respectively (HALS, 1991). Severity of disability affects ability to work as well as hours worked.

Type of Disability - PALS coded 11 different types of disabilities. Some types occur much morefrequently in the general population than others.

• Among persons age 15 years and over the three most common disabilities were mobility,72%; pain, 70%; and agility, 67%.

• Among Canadians age 15+ years the most common disability was hearing, 30%. All otherdisabilities occur among less than 20% of the population age 15+ years.

• The actual rates of disability are seeing, 17%; psychological, 15%; learning, 13%; memory,12%; speech, 11%; developmental, 4%; and unknown, 3%.


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Severity of Disability - PALS categorized disabilities into one of four categories: mild, moderate,severe, and very severe. The prevalence by type of disability is similar for all ages with littlevariation between age 5-14, 15-64 or 65 and over years.

• 32-36% have mild disability (among categories 5-14, 15-64 and 65+ years of age).

• 25% have moderate disability.

• 26-28% have severe disability.

• 14-17% have a very severe disability.

At present five general factors account for the increase in disabilities: aging population, poverty,medical advances, cultural shifts or emerging conditions, and legislation (Fujiura, 2003, pp. 1-4;Center on Emergent Disability, 1997, pp. 1-16). These factors will increase the number ofadolescents and young adults with disabilities and thereby increase the demand for disabilityservices. The number of seniors will be increasing until 2040. Each year more infants with moreserious disabilities will be saved due to modern medical technology. Changing conditions in theworld can instantly increase the number of persons with disabilities, e.g., war-related violence. Aswell, disability “feeds on poverty, and poverty on disability” (Rand, 2002, p. 8/13). In Canada, therate of disability is 30% vs. 11.8% for Aboriginal vs. general population adults age 15-64 years.Among Aboriginal seniors age 65 years and over 53% have a disability compared to 44.4% in thegeneral population (PALS, 2001).

2.7 The Standard Rules: A Tool to Mobilize International ActionThe “Standard Rules” adopted by the United Nations General Assembly in 1993 represented amajor outcome of experience gained during the Decade of Disabled Persons (1983-1992). See Exhibit12. The rules, though not legally binding, do exert an impact on policy development nationally andinternationally. Through use the 22 Rules have become international customary rules that guidenations wishing to equalize opportunities for persons with disabilities. Collectively the rules summarizethe message of the World Programme of Action (WPA) using the human rights perspective whichhad been developed during the decade.

The rules are composed of four chapters that cover all aspects of the life of persons with disabilities:1. preconditions for equal participation;2. target areas for equal participation;3. implementation measures; and4. the monitoring mechanism.

The DSP follows these guidelines in developing the optimal combination of elements for anindividual case plan.


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Chapter I. Preconditions for Equal ParticipationRule 1. Awareness-raisingRule 2. Medical careRule 3. RehabilitationRule 4. Support servicesChapter II. Target Areas for Equal Participation Rule 5. AccessibilityRule 6. EducationRule 7. EmploymentRule 8. Income maintenance and social securityRule 9. Family life and personal integrityRule 10. CultureRule 11. Recreation and sportsRule 12. ReligionChapter III. Implementation MeasuresRule 13. Information and researchRule 14. Policy-making and planningRule 15. LegislationRule 16. Economic policiesRule 17. Coordination of workRule 18. Organization of persons with disabilitiesRule 19. Personnel trainingRule 20. National monitoring and evaluation of disabilityprogrammesRule 21. Technical and economic cooperationRule 22. International cooperationChapter IV. Monitoring

Exhibit 12 Standard rules on the equalization of opportunities forpersons with disabilities

These Rules require a “multi”approach when applied. They usemultiple channels, multipleaudiences, multiple strategies, etc.to effect sustainable change in thequality of life of persons living withdisabilities, including women,children, elderly, poor, seasonal,dual or multiple disa

formative evaluation: prince edward island disability ... · evaluation primary questions exhibit 1...

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