Adult Family Survey. The NCI Adult Family Survey (AFS) is a voluntary online survey for family members who have an adult (21 years or older) with an intellectual/developmental disability who lives in the family home and receives at least one other DDD-funded service in addition to support coordination.

Family/Guardian Survey. The NCI Family/Guardian Survey (FGS) is a voluntary online survey for family members or guardians who have an adult (21 years or older) with an intellectual/developmental disability who lives outside the family home and receives at least one other DDD-funded service in addition to support coordination.

In-Person Survey. The In-Person Survey (IPS) is a voluntary, face-to-face conversation with at least 400 randomly chosen individuals who are 21 years old or older and are receiving at least one other DDD-funded service in addition to support coordination.

• The In-Person Survey is done in-person or virtually (online) by DDD staff who are specially trained. Before the survey, they gather background information from records and sometimes from the person, and/or their guardian, support coordinator, or service providers. This information includes details like demographics, personal characteristics, health information, and employment status and wages.
• The In-Person Survey has two sections:
  • Section I: Only the individual answers.
  • Section II: A proxy can answer if the individual can’t.

Participation is voluntary, and individuals can stop the survey at any time.

Adult Family and Family/Guardian Surveys

In early Spring of a participating year, an invitation letter with a unique survey link is mailed to all primary caregivers and guardians. Participation is voluntary. Family members and guardians don't have to complete the survey if they don't want to. 

Both the Adult Family and Family/Guardian Surveys have three sections:

• Demographics
• Services and supports received
• Questions about services and supports

Families and guardians can also write open-ended comments about their experience with DDD services. This helps NCI measure “family indicators.”

In-Person Survey

Beginning in October of a participating year, DDD staff will contact individuals or their guardians by phone or email to ask them to participate in the In-Person Survey. For those who agree to participate, an in-person or online meeting will be scheduled, and details will be sent by email to the person/guardian.

The In-Person Survey is done in-person or virtually (online) by DDD staff who are specially trained. Before the survey, they gather background information from records and sometimes from the person, and/or their guardian, support coordinator, or service providers. This information includes details like demographics, personal characteristics, health information, and employment status and wages.

The In-Person Survey has two sections:

• Section I: Only the individual answers.
• Section II: A proxy can answer if the individual can’t.

Participation is voluntary, and individuals can stop the survey at any time.

Improving the Workforce for Adults with Intellectual and Developmental Disabilities (IDD)

States across the country are working to improve the quality and stability of the workforce that supports adults with intellectual and developmental disabilities (IDD). This is especially important because there is a growing need for long-term care services in home and community settings.

Why It Matters:

• High staff turnover at provider agencies can be costly.
• Turnover can also affect the quality of care and outcomes for those receiving services.

What NCI Does:

NCI helps states collect detailed data on the workforce of Direct Support Professionals (DSPs) who assist adults (age 21 and older) with IDD. The State of the Workforce Survey gathers information on:

• Number of DSPs hired and separated in the past year
• Wages
• Benefits
• Recruitment and retention efforts

This survey includes paid workers whose main job is direct support in residential, employment, and day services, and other community inclusion programs.

The Goal:

• To help states compare their workforce data with other states
• To make improvements through policy or program changes

In April of a participating year, service providers get an email with instructions and a unique link to take part in the survey. The survey is short, easy to complete, and fully anonymous. The provider agency isn't identified in any reports or data.

What the Survey Asks About:

DSPs (Direct Support Professionals) who were on payroll from January 1 to December 31 of the previous year, including:

• Date of hire
• Whether they are still on staff or have left
• Date of termination (if they left)
• Whether they work full-time or part-time (for current staff)
• Hours and wages
• Benefits like paid time off and health insurance

Who Should Complete the Survey:

Staff in Human Resources or Payroll departments should complete the State of the Workforce Survey. They might need information from program directors, so they should review the questions and get help if needed.

Types of Workers to Include:

• Paid staff whose main job is to support adults with IDD.
• Staff who spend at least 50% of their time on direct support tasks.
• Supervisors who spend more than 50% of their time on direct support tasks.

Types of Workers to Exclude:

• Licensed healthcare staff (therapists, nurses, etc.)
• Those who only provide transportation, home modifications, or meal delivery
• Contract or 1099 workers
• On-call or PRN workers
• Staff hired through a temp agency
• Administrative or supervisory staff (unless they spend 50% or more of their time on direct support)

Types of Support:

• Residential Supports: Provided in a home or apartment your agency owns or operates.
• In-Home Supports: Provided in a home or apartment your agency does not own or operate.
• Non-Residential Supports: Provided in day programs, community programs, or work settings.

Note on COVID-19: Because of COVID-19, many traditionally ‘non-residential’ services began to be provided in the person’s residence or home. If services your 
agency provided fit the description above, but because of COVID-19 were provided in a person’s residence/home, they are still considered “non-residential supports.”