1. 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

2. 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

3. 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/ /

4. 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

8. 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.

9. 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?

10. 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

11. 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.

12. 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

13. 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!)

14. 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. -
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15. 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

17. 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.