Unit 4: Measuring and Reporting Progress on Social Inclusion

Unit 4: Measuring and Reporting Progress on Social Inclusion Introduction What gets measured is what gets done, is an often-quoted organizational truism. We know that people tend to pay more attention to things that they are measuring on a regular basis, especially if they have to let someone else know how it is going. Just think of those times when you have tried to change a habit of your own, like overeating or smoking. Each of us tends to be more focused and disciplined if we: set a goal (e.g., to lose 5 kg in 2 weeks) tell someone else about our goal keep a record of how we are doing These three actions not only contribute to our commitment to our desired goal, but they also provide us with someone to whom we are now accountable. Keeping a record allows us to report on our progress, or conversely, our lack of progress. Reviewing our records and reports as we proceed also provides us with the opportunity to adjust our strategy. All of this contributes to our ultimate success. If we are going to move the needle from social exclusion to social inclusion for people with developmental disabilities we must set targets, monitor outcomes, and report our progress. The final unit in this module focuses on the measuring and monitoring of social integration and inclusion. Unit 4 Learning Outcomes After completing this unit you will know more about: 1. How to write a SMART goal for social integration and inclusion. 2. The difference between subjective and objective assessments. 3. Strategies that will monitor the impact of your efforts to support the social integration and inclusion of a person with developmental disabilities. 4. Strategies for reporting progress in facilitating social integration and social inclusion. SMART Goals The first step in measuring and monitoring progress is to establish a goal. The goal statement needs to be clear, measureable, and doable. For instance, let s look at the following goal: We are going to get Tammy more friends. Although an admirable goal and in line with the purpose of this module, the goal as it is written, does not lend itself to measurement and monitoring of progress. This stated goal does not tell us why the 1

goal exists, how it is going to be accomplished, or what exactly is going to be achieved. With a goal like this, you and Tammy don t know how to get started or if you already have!. Here s a format that you may find useful. SMART goals are: pecific. What you are going to do, how, and why easurable. Concrete actions that are observable ttainable. Realistic but requiring a bit of a stretch to inspire and provoke action ealistic. Doable and based on an understanding of the current situation imely. An identified date to achieve the set goal, so it can be measured With this in mind, we could revise our original goal to something SMARTer In the next four months, I will help Tammy engage in three friendship-making activities with her gardening group (e.g., invite them for coffee, exchange canned vegetables, exchange recipes) so that she can develop closer relationships with them. This goal lends itself to being measured by anyone. It also provides you with an opportunity to focus your actions and give you something to report your progress against. Learning Activity 1. Write a SMART goal for each of three areas the person with the developmental disability wants to work on in the area of social inclusion (e.g., befriending a next door neighbour, having a colleague to get coffee with at work, participating in a neighbourhood music club) 2. Are the goals specific, measureable and time limited? No? Then back to the drawing board! Rework them until you are satisfied. 3. Share your goals with a colleague and ask them if they can tell you: a. What you are going to do b. Why you are doing it c. When you hope to be finished If they can answer these questions you have a SMART goal. If not, revise it until they can. The Foundations in Disabilities Studies training manual, Section 3, Module 13 Facilitating Growth and Skill Development has lots of useful information including strategies for planning, facilitating learning, data collection, and developing new skills. 2

Subjective and Objective Measurements The next step in measuring and monitoring your progress is to decide what measurement you will use. Wherever possible you want to collect objective data (e.g., observable) that relates to the goal. But remember that when we are talking about social integration, social inclusion, and friendship making, the opinion (e.g., subjective measure) of the person with the developmental disability is also important in measuring progress. Each type of measurement has strengths and weaknesses. Objective measures allow for comparison across time, people, environments, and settings; but in this case, they do not take into consideration the person s own sense of inclusion and acceptance. A sense of belonging, an evaluation of friendship, and an evaluation of support each require a component of subjective assessment from the person with the developmental disability as well as others in that environment. Subjective measures have been criticized because of issues with validity (i.e., answers vary over time), interpretation (e.g., what the person is saying is unclear or difficult to compare to other assessments), and utility (i.e., the data collection can be expensive and rarely used). Despite the limitations in objective and subjective assessments, when measuring the progress of social integration and inclusion you should develop a range of measures that tap into both. Discussions with the family and guardian are necessary to identify what indicators would be most informative and accessible. When deciding on a goal and what to measure, do not be solely influenced by what is easiest to count. For instance, although it would be simple to count the frequency of encounters an individual with developmental disabilities has in their community, this information isn t actually very helpful! In fact, the collection of this information may mislead the disability service personnel into thinking that encounters is the goal of social inclusion. 3

(sections of the full story reprinted here with permission from Alberta Association for Community Living) Larissa Unyk, a fourth year student, is doing something many people like her rarely get the opportunity to do. Larissa, a person with a developmental disability, is being included in the Bachelor of Arts Program. I wanted to learn, she says. I wanted to be able to take classes and do things others thought to be impossible, like getting involved in school activities. Thanks to the efforts of Campus Connections, Larissa and eight other students are able to take classes, join clubs, participate in student government, find paid employment and most importantly, make friends with their MacEwan University classmates. Campus Connections is an on-campus initiative of the Alberta Association for Community Living (AACL) in partnership with MacEwan University. AACL is a provincial organization that has been supporting and advocating on behalf of individuals with developmental disabilities and their families for more than 50 years. Campus Connections provides assistance to students with developmental disabilities and also supports their classmates and instructors in order to ensure a quality inclusive education is available to all students. Campus Connections has been a part of the university since 1995, making MacEwan University one of the first post-secondary institutions in Alberta to offer an inclusive learning initiative. Campus Connections enables students with developmental disabilities the opportunity to follow the typical pathway of their non-disabled peers. Recognizing being a student is more than just academics, we support MacEwan University to facilitate the involvement of students with developmental disabilities in every facet of campus life, says Nathan Ip, Campus Connections coordinator. Going to university is a coming-of-age milestone for many people and this is true for adults with developmental disabilities. In addition to becoming a university student, Larissa has reached a number of milestones in the last few years, including getting her first paid job, running for secretary of the anthropology club, finding summer work with MacEwan Residence and receiving an award nomination as part of the Students Association Banner Night. At the end of their studies, students cross the stage alongside their peers as part of Convocation and receive a certificate declaring that they have completed their courses. This is the realization of a dream most parents never thought possible. Being a student is wonderful, says Larissa. Not everyone can go to university. I just want to live life, learn more and find a career, like all my classmates and friends. 4

Reflection Activity 1. Does this story surprise you? It surprises some people because they still think that individuals with developmental disabilities can t or maybe even shouldn t be in some environments or communities. What Larissa s story, and many others like it, teach us is that the range of opportunities and possibilities where people with developmental disabilities can connect is expansive. 2. Think about the individual you are supporting with community inclusion activities. Consider their age, sex, and cultural background. What is the typical pathway of their non-disabled peers? Which of these is the person involved in now? What could you do to foster their involvement in the future? Where individuals with developmental disabilities could not be included - we don t know - the possibilities are endless. ~ Bruce Uditsky A friendly reminder... On the off chance you ve already forgotten what we covered in Unit 1 of this Module, the conceptual model of the components of social integration for adults consists of: Participation. Being involved in activities alongside others in valued community settings Encounters. Short interactions with others Informal Support. Non-paid instrumental, social, financial, and emotional assistance Friendships. Voluntary, reciprocal, trusting, long-term relationships A Sense of Belonging. Feeling valued and self-directed Citizenship. Self-advocacy and individual rights Public Awareness & Acceptance. A positive shift in public attitudes and behaviours toward people with developmental disabilities 5

Strategies for Monitoring Along with measuring progress relating to a specific goal or intervention, you may also develop strategies to monitor the general progress being made in social integration and inclusion. The following strategies are identified in the literature: i was used to measure quantitative and qualitative changes in social networks as a result of supported employment. An assessment of the structural (size, membership, and density), interactional (reciprocity, frequency, duration, and closeness), and functional (companionship and decision-making) aspects of social networks resulted. Network density was calculated, with the kind of support and interaction rated on a scale. produces qualitative and quantitate data. In one study interviewees were asked to rate their contact within the last six months. ii To assist in the reliability of this data collection the researchers had structured the interviewees responses into 35 potential contacts, which were in turn divided into six categories of activity. By asking the interviewee to provide details about their most common form of contact (coded as supervised, accompanied, alone, or peer group), qualitative data was also collected. that captured social outcomes were also used. iii The analysis of the results was time-consuming. The difficulty in this approach lies in the validity between actual observations and records. Limiting the categories of community events and dividing the activities as integrated versus isolated would increase the reliability of the data collection. iv is used throughout the Alberta PDD Program to provide standardized information regarding the pattern and intensity of supports required by a person to help him or her succeed in major life activities. It provides a framework for implementing a system of supports that enhances or maintains the person s medical and behavioral well-being. Information from the SIS is currently being used by support teams throughout Alberta to plan, develop, and implement Individual Support Plans that align individualized support strategies to assessed support needs and personal outcome categories. The areas covered in the SIS assessment include: Emotional well-being. Happiness and safety, and how individuals feel about their life. Interpersonal relationships. The types of support and help experienced by individuals, their relationships with family and friends, and the kinds of activities thy do with the people in their life. Social inclusion. The activities and things individuals do and would like to do in the community, the people individuals do things with and places they go in their community. 6

Personal development. The things that individuals are interested in learning about and the things they enjoy and believe are important to them. Self-determination. The choices and decisions individuals make about areas that matter to them in their life. Physical well-being. Energy levels, being able to get medical help, and health and lifestyle. Material well-being. Personal possessions that are important to individuals, how much independence they have to spend money and make monetary decisions about things they want or need. Rights: individuals right to privacy, how individuals are treated by people, how much individuals are listened to. v tool is intended to provide a valid, reliable, consistent, common and objective approach to measuring the experiences of adults with developmental disabilities in eight domains that reflect quality of life. It is a survey that profiles how individuals feel about their quality of life. vi is a pictorial measure of community connectedness which has not been validated on people with developmental disabilities, although the concrete nature of the pictorial scale may be a useful tool for assessing their perceived connectedness. The following table presents other indicators you might consider when monitoring the social inclusion of people with developmental disabilities. 7

DEFINITIONAL COMPONENTS INDICATORS SOURCES Participation. Being involved in activities with others in valued community settings Age-appropriate activities in inclusive settings Documentation on the individual's file monthly calendar of activities and location Encounters. Short interactions with others Informal Support. Non-paid instrumental, social, financial, and emotional assistance Friendships. Voluntary, reciprocal, trusting, long-term relationships A Sense of Belonging. Feeling valued and selfdirected Citizenship. Self-advocacy and individual rights Public Awareness & Acceptance. A positive shift in public attitudes and behaviours toward people with disabilities The number of fleeting vs membership encounters Rating of membership encounters (Revisit Unit 1 for a refresher if you need to. In short: ghost and guest, inclusion person, person who needs help, just another person, friend) The presence of a person who is not a disability services professional, a member of his/her family, or their guardian at the annual planning session for the individual Contact (face-to-face, email, phone) with others who are not disability services professionals, family or guardians Social network assessment Identification of friendship by the individual Number of identified friends Frequency of contact with friends Rating by the individual Level of choice (i.e., options, opportunity, resources, experience) in decision-making Stated awareness of the Convention on the Rights of Persons with Disabilities (CRPD) Involvement in self-advocacy and/or peer support groups Involvement in the electoral processes Involvement in decision-making groups (e.g., board of directors) Rate of reported discrimination and abuse claims Rate of employment for people with disabilities Number of people with disabilities involved in committees, groups, and activities Number of environments and transportation systems accessible to people with mobility issues Documentation on the individual's file Documentation on the individual's file List of attendees and their relationship at annual planning sessions Review of contacts and support provided at annual planning session Documentation on their file Interviews with the individual, their parents and guardians Interviews with the Individual, their parents and guardians Documentation on the individual's file Human Rights Commission Statistics Canada City of Calgary s Signposts Calgary Foundation s Vital Signs 8

Reporting Progress You are expected to summarize what you have learned from monitoring the goals you set on a regular basis. Before you start, ask yourself four questions: needs this update (e.g., the audience)? do they want/need to know and why? is the data/information telling me? can you best communicate the information? Understanding who the audience is, is a critical first step in determining how and when you are going to provide the information. Potential audiences might include: the individual with developmental disabilities, the family and guardian, the agency who has contracted with you do this work, and/or the funder. Each of these update recipients will have different requirements. Consider the following examples: A program funder needs the number of hours involved in a particular activity so they can be accountable for their spending budgets. A family member who is not also the person s trustee needs to know if the person is happy, safe, and involved in meaningful activities because they care about the welfare of the individual. A parent involved in family-managed supports funding will require the number of intervention hours, the outcomes and whether the person is involved in meaningful and safe activities which they seem to enjoy, because they are accountable to their funder (e.g., Disability Services) for how and why program funds were used. The individual with the developmental disability will want to know if they are getting closer to their self-identified goal, the next steps and actions in achieving this goal, and the choices they have in these actions. Each update recipient may expect the information at different times depending on their interest and their need to be accountable to others. Sometimes this information can be simply be shared verbally, in an email, or even in picture format. At other times, depending on the recipient, this information will need to be shared in a written report. If you are working in a disability service agency, there may be a particular form and style for writing reports. The funder may also have a form for reporting the information. When you are writing a summary report or an entry in a file Avoid jargon, labels and acronyms Include all necessary information Use proper spelling and punctuation Be respectful Be clear and specific Write legibly Sign and date each entry or report 9

Learning Activity 1. Divide a page into columns similar to the following example: Who What When How CRCB PDD (Funder) # of hours spent pursuing community access and employment activities monthly timesheet 2. Make a list of everyone who will want/need an update on the community inclusion progress that is being made. 3. Check with the individual, their family and guardian to determine if the list is accurate (e.g., does anyone need to be added or deleted from the list). 4. Spend time with each person to find out exactly what information they need and how they would like it conveyed (e.g., a particular form that has to be used). 5. Share this information with the family and guardian. Work with them to make sure the reporting requirements are manageable and helpful. Then decide if you are spending more time reporting to everyone than actually doing the work there is someone else who could provide the information (e.g., a network member or the individual with the developmental disability) one update could be shared with multiple recipients 6. Put a record of this chart somewhere, so that other disability service professionals can access it. 7. Develop a calendar of reporting activities to inform the appropriate people about progress on the goals. John O Brien and Connie Lyle O Brien discuss integrity and accountability in their paper Assistance with Integrity. The National Disability Authority of Ireland outlines Guidelines on Person Centred Planning in the Provision of Services for People with Disabilities in Ireland. 10

Endnotes i Forrester-Jones, R., Jones, S. Heason, S. and Di Terlizzi, M. (2004). Supported employment: A route to social networks, Journal of Applied Research in Intellectual Disabilities, 17, 199-208. ii Baker, P.A., (2000). Measurement of Community participation and use of leisure by service users with intellectual disabilities: the Guernsey Community Participation and Leisure Assessment (GCPLA), Journal of Applied Research in Intellectual Disabilities, 13, 169-185. iii ibid iv Schalock, R. L., & Keith, K.D. (1993). Quality of Life Questionnaire Manual. Worthington, OH: IDS. v ibid vi Mashek, D., Cannaday, L. W., and Tangney, J. P. (2007). Inclusion of community in self scale: A single-item pictorial measure of community connectedness, Journal of Community Psychology, 35(2), 257-275. 11