VIRGINIA NATIONAL CORE INDICATORS (NCI) IDD PROJECT
2023 CHILD FAMILY SURVEY REPORT
Prepared by the Partnership for People with Disabilities & Virginia Commonwealth University
Partnership for People with Disabilities
School of Education
Virginia Commonwealth University
Virginia Department of Behavioral Health and Developmental Services (DBHDS)
This report includes information from a sample of family members of children under the age of 18 with intellectual and developmental disabilities (IDD) who use services from the Building Independence (BI), Family and Individual Supports (FIS), and Community Living (CL) waivers.
Questions about this report should be referred to Parthy Dinora at padinora@vcu.edu.
For more information about NCI in Virginia, visit our website at: https://nci.partnership.vcu.edu/
February 2024
The Partnership for People with Disabilities is a university center for excellence in developmental disabilities at Virginia Commonwealth University (VCU). VCU is an equal opportunity/affirmative action university providing access to education and employment without regard to age, race, color, national origin, gender, religion, sexual orientation, veteran's status, political affiliation, or disability. If alternative formats of this document are needed, please contact the Partnership at (804) 828-3876 or (800) 828-1120 (TTY Relay).
ABOUT THE RESPONDENTS
The survey results represent the opinions of those who responded and may not be representative of the experiences of all families across Virginia.
The total number of respondents was 161 with a 19% return rate.
Relationship to Child
- 79% Parents (biological, adoptive, or foster)
- 17% Grandparents
Age of Respondent
- 67% 35-54 years of age
- 29% 55-74 years of age
Highest Education Level
- 53% College degree or higher
- 18% Some college
- 19% High school diploma or GED
Self-reported Health
- 4% Poor health
- 25% Fair health
Children with Disabilities in Household
- 59% Have more than one child with a disability
Geographical Area
- 65% Urban/Suburban
- 35% Rural
Out-of-Pocket Money Spent on Child's Services
- 27% $101 - $1,000
- 29% $1,001 - $10,000
Household Income
- 14% Under $25,000
- 30% $25,000-$75,000
- 26% Over $75,000
ABOUT THE CHILDREN USING SERVICES
Child's Race & Ethnicity*
*More than one race or ethnicity could be selected
- 64% White
- 17% Black/African American
- 14% Asian
- 10% Hispanic/Latino
- 3% American Indian/Alaskan Native
Child's Gender
- 69% Male
- 31% Female
Age Information
- Mean age: 14
- Youngest Child: 7
- Oldest Child: 18
Child's Disabilities*
*More than one disability could be selected
- 71% Autism Spectrum Disorder
- 34% Intellectual Disability (ID)
- 29% Seizure Disorder and/or Neurological Problem
- 27% Mood Illness/Psychiatric Disorder
- 15% Cerebral Palsy
Behavior Management Assistance
"Some support" is defined as "requires only occasional assistance or monitoring" while "Extensive support" is defined as "frequent or severe enough to require regular assistance".
- 46% Some
- 38% Extensive
Personal Care Activities
- 27% Some
- 69% Extensive
Child's Communication Methods
- 56% Spoken
- 23% Gestures/body language
- 13% Communication aid/device
- 2% Sign language or finger spelling
INFORMATION & PLANNING
Said "YES" They Need Help Planning for Child's Future in These Areas*
*More than one answer option could be selected
- 70% Medical
- 69% Legal
- 69% Financial
- 64% Transition from School
- 60% Employment
- 55% Housing
- 55% Social/Relationships
- 51% Recreation/Having Fun
Case Manager/Support Coordinator
- 93% Feel their case manager/support coordinator respects their family's choices and opinions
- 93% Are able to contact their child's case manager/support coordinator when they want to
- 63% Always/Usually have enough information to participate in planning
- 67% Say the information they get about services and supports is easy to understand
- 77% Know how to report abuse or neglect
Did Anyone in the Family Choose the Child's Case Manager/Support Coordinator?
- 24% Chose case manager/support coordinator
- 53% Did not choose case manager/support coordinator but can change if wanted
- 24% Did not choose case manager/support coordinator and cannot change if wanted
SERVICE PLANS
- 85% Have a service plan for their child
- 80% Say their service plan includes all the services and supports their child needs
- 88% Helped make the child's service plan
- 17% Had the child with a disability help make the service plan
- 44% Have a transition plan for their child (ages 14 and above)
ACCESS & DELIVERY OF SUPPORTS
Barriers to Participating in Community Activities*
*More than one answer option could be selected
- 37% Stigma
- 35% Cost
- 34% Lack of Support Staff
- 15% Lack of Transportation
Service Quality and Accessibility
- 96% Support workers speak to them in a way that they understand
- 97% Services are delivered in a way that is respectful to the family's culture
- 76% Services and supports change when the family's needs change
- 70% Child has the special equipment accommodations that they need (for example wheelchair, ramp, communication board, etc.)
- 63% Family gets the supports and services they need
Healthcare Access
- 92% Child can see health professionals (for example a doctor, dentist, psychologist, etc.) when needed
- 89% Child's primary care doctor understands the child's needs related to their disability
- 85% Can go to the dentist when needed
- 83% Dentist understands the child's needs related to their disability
- 80% Mental health professionals understand the child's needs related to their disability (for example a psychologist, psychiatrist, counselor)
- 46% Have access to respite services when needed
OUTCOMES
- 94% Services and supports have made a positive difference
- 90% Services and supports help child live a good life
- 90% Family supports improved ability to care for child
- 78% Services and supports reduced out-of-pocket expenses
- 63% Family gets the supports and services they need
2023 CHILD FAMILY SURVEY REPORT | VIRGINIA NCI-IDD PROJECT | 01-10