Administration on Developmental Disabilities: Overview of Data Collection

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