Virginia National Core Indicators (NCI) Project
2022 Adult Survey Family Report
Family Members Over the Age of 18 Who Use Medicaid Developmental Disability Services
May 2023 | Prepared by the Partnership for People with Disabilities at Virginia Commonwealth University
This report includes information from a sample of families with family members of adults over 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.
Definitions
- Respondent: The person who completed the survey.
- Family Member: The person using services from the BI, FIS, and CL waivers.
- Family: Refers to the Respondent and Family Member.
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.
Total Number of Survey Responses
- Out of Family Home: 135 (Adult family member lives outside the family home)
- In Family Home: 129 (Adult family member lives in the family home)
| Category | Out of Family Home | In Family Home |
|---|---|---|
| Respondent is Age 55 or Older | 83% | 82% |
| Respondent Has Poor or Fairly Good Health* | 11% | 32% |
| Respondent Has Some College or College Degree* | 76% | 63% |
* Indicates a statistically significant difference between households.
About the Family Member (Using Services)
Demographics
| Category | Out of Family Home | In Family Home |
|---|---|---|
| Lives in a Rural Area | 30% | 41% |
| Average Age* | 46 | 34 |
| Has a Court-Appointed Legal Guardian | 79% | 77% |
Race & Ethnicity
| Group | Out of Family Home | In Family Home |
|---|---|---|
| Asian | 1.5% | 9% |
| Black/African American | 21% | 25% |
| White | 75% | 63% |
| Hispanic/Latino | 3% | 3% |
Support Needs
| Need Type (Some or Extensive) | Out of Family Home | In Family Home |
|---|---|---|
| Daily Activities | 100% | 98% |
| Personal Assistance | 88% | 88% |
| Manage Behaviors* | 74% | 58% |
Information & Planning
| Question | Out of Family Home | In Family Home |
|---|---|---|
| Respondent always/usually gets enough information to take part in planning services | 86% | 76% |
| The information about services and supports is always/usually easy to understand for the respondent* | 87% | 75% |
| The Case Manager/Support Coordinator always/usually respects family's choices and opinions | 93% | 95% |
| Service plan includes all services/supports the family member needs | 93% | 85% |
| Family member gets all services in the service plan* | 92% | 77% |
Access & Delivery of Supports
| Question | Out of Family Home | In Family Home |
|---|---|---|
| Family is always/usually able to contact Case Manager/Support Coordinator | 95% | 90% |
| Family is always/usually able to contact support workers | 87% | 88% |
| Respondent knows who to talk to if having problems with Case Manager/Support Coordinator | 86% | 78% |
| Family gets the services and supports needed | 87% | 69% |
| Respondent knows how to file complaint/grievance about provider agencies/staff* | 72% | 56% |
| Services and supports always/usually change when family's needs change* | 89% | 77% |
Health & Safety
Provider Always/Usually Understands Family Member's Needs Related to Disability
- Primary Care:** Out of Home (93%), In Home (86%)
- Dentist: Out of Home (90%), In Home (88%)
- Mental Health: Out of Home (91%), In Home (91%)
**Primary Care provider includes doctors, nurses, etc.
Access to Care
| Question | Out of Family Home | In Family Home |
|---|---|---|
| Family member chose their primary care doctor | 36% | 35% |
| Family member can always/usually see a primary care provider when needed | 89% | 94% |
| Family member can always/usually go to the dentist when needed* | 92% | 82% |
Community Involvement
| Question | Out of Family Home | In Family Home |
|---|---|---|
| Family member participates in community activities | 87% | 84% |
| Family participates in family-to-family networks in community | 22% | 18% |
| Family member has enough supports to work/volunteer in the community* | 68% | 43% |
Outcomes & Satisfaction
| Question | Out of Family Home | In Family Home |
|---|---|---|
| Services and supports have made a positive difference for family member | 94% | 87% |
| Services and supports help family member live a good life* | 97% | 86% |
* Indicates a statistically significant difference between households.