Contents

What is NCI-IDD?

The National Core Indicators® – Intellectual and Developmental Disabilities (NCI®-IDD) program is a voluntary effort by state developmental disability agencies to track their performance using a standardized set of consumer and family/guardian surveys with nationally validated measures. The effort is coordinated by the National Association of State Directors of Developmental Disabilities Services (NASDDDS) and the Human Services Research Institute (HSRI).

In 2020-21, a total of 48 states, the District of Columbia and 22 sub-state entities participated in NCI-IDD.

Where are the statistics in this report from?

This report includes findings from the National Core Indicators® 2020-21 Child Family Survey (CFS). The data shown are weighted NCI-IDD averages. These data are comprised of 4,693 valid surveys collected across 10 states: Arizona (AZ), Colorado (CO), Minnesota (MN), Missouri (MO), North Carolina (NC), Oregon (OR), South Dakota (SD), Texas (TX), Virginia (VA), and Wisconsin (WI).

What is the NCI-IDD Child Family Survey?

The NCI-IDD Child Family Survey is used to gather data on family outcomes. It is mailed to families who have a child who lives with the respondent and and receive at least one service in addition to case management from the state DD agency. The survey collects demographic information on both the child receiving services (‘child’) as well as the person who fills out the survey (the ‘respondent’) and information on services and supports received. The survey is continually refined and tested to ensure it is valid and reliable.

Please note that while the term “case manager” is used throughout this report, the same role may also be referred to as “service coordinator” or “supports coordinator” depending on the state.

Important note on reponses: All data are reported by the respondent based on their understanding of their child’s demographics, diagnoses, and personal characteristics.

Important note on Impact of COVID-19

The 2020-21 NCI-IDD Family Survey data collection cycle began July 1, 2020 and ended June 30, 2021. Because the family surveys do not collect information on the date of survey completion, we cannot fully assess what impact the pandemic had on data collected at different times throughout the year. Additionally, we cannot determine whether COVID-19 impacted state samples. For instance, we do not know if certain populations were more or less likely to respond to the survey and we do not know whether or how responses were affected for specific questions. While these data will serve as an important baseline, and meaningful resource for states to understand the overall impact of services on families of individuals being served, these data should be read with caution and not for direct comparison with pre-pandemic years.

COVID-19 Supplement

To help better understand the overall impact of COVID-19 on families, NCI-IDD added a state-optional COVID-19 Supplement to all NCI surveys. The COVID-19 Supplement is intended to support the understanding of the experiences of people with disabilities and their families during the COVID-19 pandemic, and their interactions with services. The NCI-IDD Family Surveys COVID-19 Supplement can be found at this link.

What is included in this report?

This report includes this state’s Child Family Survey data compared to the NCI-IDD Average. State outcomes that are significantly higher or lower than the NCI-IDD Average are indicated with an arrow:

1. Outcomes where the state is significantly above the NCI-IDD average are denoted with an up arrow ▲;
2. Outcomes where the state is significantly below the NCI-IDD average are denoted with a down arrow ▼.

Significance is based on “Always” or “Yes” response.

The charts in this document, grouped by subdomain, display the state results alongside the average across states (NCI-IDD average). The charts are followed by accessible tables containing the same information.

To find out more about the development of the Child Family Survey, data analysis and state samples, check out the National Child Family Survey Report

Demographics - Family Member

Table 1. More Than One Child Living in the Home Has IDD

Table 2. Child's Age

Table 3. Child's Gender

Table 4a. Child's Disabilities

Table 4b. Child's Disabilities (continued)

Table 5a. Child's Health Conditions

Table 5b. Child's Health Conditions (continued)

Table 6. Child's Race and Ethnicity

Table 7. Child's Preferred Means of Communication

Table 8. Child's Support Needs for Self-Injurious, Disruptive, or Destructive Behaviors

Table 9. Child's Level of Help Needed With Personal Care Activities

Demographics - Respondents

Table 10. Language usually spoken at home

Table 11. Respondent's Age

Table 12. Respondent's Health

Table 13. Respondent's Relationship to Child

Table 14. Respondent or Other Family Member Provides Paid Support to Child

Table 15. Number of Adults in Household

Table 16. Number of Children in Household (including child receiving services about whom survey is being completed)

Table 17. Respondent's Highest Level of Education

Table 18. Total Taxable Household Income of Wage Earners in the Past Year

Table 19. Residential Designation (Urban, Rural, or Suburban)

Demographics - Services and Supports Received

Table 20. Services and Supports Received From IDD Agency

Table 21. Other Services or Supports Received

Information and Planning

Information and Planning Tables

Table Q1. Do you get enough information to take part in planning services for your child?

Table Q2. Is the information you get about services and supports easy to understand?

Table Q3. Does the case manager respect your family's choices and opinions?

Table Q4. Do you have enough information about other public services for which your family is eligible?

Table Q5. Do you need help planning for your child's future with respect to any of the following?

Table Q6. If you asked for crisis or emergency services during the past year, were services provided when needed?

Table Q7. Does your child have a service plan?

Table Q8. Does the plan include all the services and supports your child needs?

Table Q9. Does your child receive all of the services listed in the plan?

Table Q10. Did you or another family member help make the plan?

Table Q11. Did your child help make the plan?

Table Q12. Did you discuss how to handle emergencies (such as a medical emergency or a natural disaster) at your child's last service planning meeting?

Table Q13. Does your child have a transition plan (as part of an IEP or Section 504 plan through their high school, usually starting at age 14)?

Table Q14. If your child has a transition plan, did you help make the plan?

Table Q15. Do you feel prepared to handle the needs of your child in an emergency such as a medical emergency or a natural disaster?

Access and Delivery of Services and Supports

Access and Delivery of Services and Supports Tables

Table Q16. Are you able to contact your child's support workers when you want?

Table Q17. Are you able to contact your child's case manager when you want?

Table Q18. Do support workers come and go when they are supposed to?

Table Q19. Do services and supports change when your family's needs change?

Table Q20. Do support workers speak to you in a way that you understand?

Table Q21. Are services delivered in a way that is respectful of your family's culture?

Table Q22. If your child does not communicate verbally (for example, uses gestures or sign language), are there support workers who can communicate with him/her?

Table Q23. Do support workers have the right information and skills to meet your family's needs?

Table Q24. Does your child have the special equipment or accommodations that they need?

Table Q25. Can your child see health professionals when needed?

Table Q26. Does your child's primary care doctor understand their needs related to their disability?

Table Q27. Can your child go to the dentist when needed?

Table Q28. Does your child's dentist understand your child's needs related to their disability?

Table Q29. If your child takes medications, do you know what they're for?

Table Q30. Do you know when your child should take the medication, how much to take, and the potential side effects?

Table Q31. If your child uses mental health services, does the mental health professional understand your child's needs related to their disability?

Table Q32. If you need respite services, are you able to get them?

Table Q33. If you have used respite services in the past year, were you satisfied with the quality of the respite providers?

Table Q34. Does your family get the supports and services it needs?

Table Q35. If family does not get the support and services needed, what additional services does your family need?

Choice, Decision Making and Control

Choice, Decision Making and Control Tables

Table Q36. Can your family choose or change the agency that provides your child's services?

Table Q37. Can your family choose or change your child's support workers?

Table Q38. Does your family manage support workers?

Table Q39. Do service providers for your child work together to provide support?

Table Q40. Did you, your child, or someone else in your family choose your child's case manager?

Involvement in the Community

Involvement in the Community Tables

Table Q41. Does your child take part in activities in the community?

Table Q42. For your child, what makes it hard to take part in activities in the community?

Table Q43. Does your child spend time with children who do not have developmental disabilities?

Table Q44. In your community, are there resources that your family can use that are not provided by the IDD agency (for example, recreational programs, community housing, library programs, religious groups, etc.)?

Table Q45. Does your family take part in any family-to-family networks in your community (for example, Parent to Parent, sibling networks, etc.)?

Satisfaction With Services and Supports

Satisfaction With Services and Supports Tables

Table Q46. Overall, are you satisfied with the services and supports your family currently receives?

Table Q47. Do you know how to file a complaint or grievance about provider agencies or staff?

Table Q48. If a complaint or grievance was filed or resolved in the past year, are you satisfied with the way it was handled?

Table Q49. Do you know how to report abuse or neglect?

Table Q50. Within the past year, was a report of abuse or neglect filed on behalf of your child?

Table Q51. If abuse or neglect was reported on behalf of your child in the past year, did the appropriate people respond to the report?

Table Q52. If someone outside of your family reported abuse or neglect on behalf of your child in the past year, were you notified of the report in a timely manner?

Table Q53. Do you feel that family supports have made a positive difference in the life of your family?

Table Q54. Have services and supports reduced your family's out-of-pocket expenses for your child's care?

Table Q55. Do you feel that family supports have improved your ability to care for your child?

Table Q56. Have the services or supports that your child/family received during the past year been reduced, suspended, or terminated?

Table Q57. If services or supports received by the family were reduced, suspended or terminated during the past year, did the change affect your family or your child negatively?

Table Q58. Have the services or supports that your child received been increased in the past year?

Table Q59. Are services and supports helping your child to live a good life?