Including People with Intellectual/Developmental Disabilities in research and evaluation Jennifer Sullivan Sulewski Institute for Community Inclusion University of Massachusetts Boston Presentation outline: Background about my research on community based non work Approaches and lessons learned including PWD at different stages: Study design Consent process Data collection Reporting & use of findings

Background: What is community-based non-work anyway? Integrated employment: A job in the community Community-based non work: Recreational, skill, training, or volunteer activities in settings where most people do not have disabilities Facility Facility-based work: Employment in a facility where most people have disabilities (sheltered workshop) Facility-based non work: Recreation, skill training, or therapy in a facility where most people have disabilities (day habilitation) Community-based non-work (CBNW) are supports for people with intellectual/developmental disabilities that do not involve paid employment of the participant but do take place in community settings rather than in a day facility

Background: What is community-based non-work anyway? Community-based non-work (CBNW) are supports for people with intellectual/developmental disabilities that do not involve paid employment of the participant but do take place in community settings rather than in a day facility flickr.com/photos/auvet/2599240248/

Community-based non-work (CBNW) are supports for people with intellectual/developmental disabilities that do not involve paid employment of the participant but do take place in community settings rather than in a day facility http://www.flickr.com/photos/jreed/348705218/

http://www.flickr.com/photos/edyson/

http://www.flickr.com/photos/m_e_l_o_d_y/

http://www.flickr.com/photos/sanjoselibrary/

and why is it important to study? • As of 2001 (time of this study), over 84,000 adults with developmental disabilities (18% of those receiving day or employment supports) were in CBNW. Nationally, participation in community-based non work services has grown steadily for states that report it as a service, from 12.5 percent in FY1996 to 31 percent in FY2007. Yet there was very little research or evaluation of CBNW policies & practices People with most significant disabiliteis tend to end up in these kinds of programs - so it was important to include them as study subjects - hence the particular relevance of inclusivity/universal design.

1. How are CBNW programs defined, delivered, and experienced? Research Questions 1. How are CBNW programs defined, delivered, and experienced? 2. Do the best CBNW programs advance current goals of disability policy, such as integration, independence, empowerment, and meaningful community participation?

Designing the study to be inclusive: Embedded case study approach State Local provider agency Local provider agency Local provider agency Individual Individual Individual Case study approach allows for inclusion of multiple perspectives - people with & without disabilities - embedded to create a story Individual Individual Individual Individual Individual Individual

Designing the study to be inclusive: Instrument design Keep questionnaires short & simple: “What do you do during the day?” “Where do you go?” “What do you like about it?” Found I needed to simplify even further e.g. for people who were non-verbal communicators use yes-no questions.

Designing the study to be inclusive: Triangulation Interviews with staff, family Especially important due to challenges of interviewing people with limited verbal communication & intellectual capacity, and of using proxies Interviews with people with disabilities Observations

Consent process presents challenges - need for consent from guardians for those under guardianship - present information verbally as well as on paper - IRB process - wish I had pushed back more to keep it simpler (rather than having all this written material!)

Data collection - a lot of time on the road - meeting people where they are at - need for flexibility - different communication approaches/needs - need for patience with people who don’t get to the point quickly - use of proxies/co-interviewees - and need to take those with a grain of salt as well. - flickr.com/photos/robotbrainz/2535755932/

Sharing results This is an area where I could have done more. One good example of accessible results: real people, real jobs video success stories

Applying the Universal Design Principles 1) Equitable Use Inclusion of people with & without disabilities Variety of data collection methods 2) Flexibility in Use Reframing & modifying questions Using communication devices Using proxies when needed. 3) Simple and Intuitive Use Simple written and verbal explanations for consent Short, simple questionnaire. 4) Perceptible Information Verbal explanations Yes/no questions Assistance from trusted persons 5) Tolerance for Error N/A 6) Low Physical Effort Local, familiar locations 7) Size & Space for Approach & Use See above.