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Administration on Developmental Disabilitiesskip to primary page content

Overview of Data Collection in DDPIE Study

Overview of Data Collection in DDPIE Pilot Study National Network of University Centers for Excellence in Developmental Disabilities Education, Research, and Service (UCEDDs)

Key Informant
Type of Interview
No. Interviewed per Site
Duration of Interview
Criteria/Method of Selection
Executive Director (ED) with staff, as appropriate Individual, in-person 1+ 3-4 hours*
  • Additional staff at discretion of ED (e.g., Associate Director)
Consumer Advisory Committee (CAC) members Individual, in-person 3 ½ hour – 45 minutes
  • Chair (if there is one)
  • All have at least 1 year on CAC
  • At least one has gone through at least one 5-year plan development process
Current/former students Individual, telephone 3 ½ hour - 45 minutes
  • Could include:
    • Students who graduated from core disability program
    • Students who were exposed to disability content – could be current students
    • Participants in continuing education classes
  • Timeframe: within past 3 years
Researchers/colleagues/university administrator Individual, telephone 3 ½ hour - 45 minutes
  • External colleagues:
    • not a staff member of a UCEDD or UCEDD’s university faculty
    • collaborated on project or publication with a UCEDD faculty member or served on a professional committee with UCEDD faculty member
  • University colleagues/ administrator – not a member of the UCEDD
Recipients of community services (or those trained to provide community services) Individual, in person 3 ½ hour - 45 minutes
  • Could include:
    • People with developmental disabilities
    • Family members
    • Service providers to people with developmental disabilities
    • People who interact with people with developmental disabilities as part of the general public (e.g., employers, dentists, city officials, fitness instructors)

*Full interview will not take place all at once; staff may be interviewed separately, as appropriate.


Overview of Data Collection in DDPIE Pilot Study State Councils on Developmental Disabilities

Key Informant
Type of Interview
No. Interviewed per Site
Duration of Interview
Criteria/Method of Selection
Executive Director (ED) with staff, as appropriate Individual, in-person 1+ 3-4 hours*
  • Additional staff at discretion of ED (e.g., Associate Director)
DD Council members Individual, in-person 3 ½ hour – 45 minutes
  • Chair
  • 2 other members
  • All have at least 1 year on DD Council
  • At least one has gone through at least one State Plan development process
Mixed group to talk about systems design – policy makers, collaborators, contractors for systems design projects (as appropriate) Group, in person Up to 8** 1 ½ - 2 hours Select a specific example with the ED and ask ED to select individuals from among the following categories:
  • State directors
  • Governor’s liaison
  • Legislative committee staff
  • City Council members
  • Tribal and other community leaders
  • Parents groups
  • Other appropriate partners/collaborators
  • Contractors that implemented project on behalf of DD Council
Recipients of advocacy/leadership training Individual, in person 3 ½ - 45 minutes
  • People with developmental disabilities
  • Family members
  • Received training within past 3 years
  • Seek range of disabilities
Recipients of education and training to improve community capacity Individual, telephone 3 ½ - 45 minutes Ask ED to identify people in the following categories:
  • Service providers to people with developmental disabilities
  • People who interact with people with developmental disabilities as part of the general public (e.g., employers, dentists, city officials)
    • People with developmental disabilities
    • Family members
    • Service providers to people with developmental disabilities
    • People who interact with people with developmental disabilities as part of the general public (e.g., employers, dentists, city officials, fitness instructors)

*Full interview will not take place all at once; staff may be interviewed separately, as appropriate.
**Questions will vary according to type of experiences of group participants


Overview of Data Collection in DDPIE Pilot Study Protection and Advocacy System

Key Informant
Type of Interview
No. Interviewed per Site
Duration of Interview
Criteria/Method of Selection
Executive Director (ED) Individual, in-person 1+ 3-4 hours*
  • Additional staff at discretion of ED (e.g., Legal Director)
P&A staff Individual, in-person 3 ½ hour – 45 minutes
  • Intake
  • Advocacy/legal
  • Public education
Board of Directors  (Advisory Panel) Individual, telephone 3 ½ hour – 45 minutes
  • Chair and two members
  • At least one with 1 year on Board
  • At least one with 3+ years on Board
  • Mix of background and expertise
  • At least one person has a relationship with developmental disabilities (self, family member)
Policymakers/collaborators to talk about systemic advocacy activities Group, in person Up to 8** 1 ½ - 2 hours Select a specific example with the ED and ask ED to select individuals from among the following categories:
  • State directors
  • Governor’s liaison
  • Legislative committee staff
  • City Council members
  • Tribal and other community leaders
  • Parents groups
  • Other appropriate partners/collaborators
Recipients of P&A-sponsored public education Individual, telephone 3 ½ - 45 minutes
  • Work with ED to randomly select 25 individuals, if sampling frame available
  • ED purposefully selects 3 from 25 contacts
  • ED selects from among following categories:
    • employers
    • city officials
    • providers of services to people with developmental disabilities
P&A clients Individual, in person 3 ½ - 45 minutes
  • Work with ED to randomly select 25 clients using case file number within a specified time period as a sampling frame.
  • Ask ED to purposefully select 3 individuals from among the 25.
  • Select at least one client whose objective was not met.
  • Personal assistant/family member may be present if client requests.

*Full interview will not take place all at once; staff may be interviewed separately, as appropriate.
**Questions will vary according to type of experiences of group participants