Contents

What is NCI?

The National Core Indicators (NCI) 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 2019-20, a total of 46 states, the District of Columbia and 22 sub-state entities participated in NCI.

Where are the statistics in this report from?

This report includes findings from the National Core Indicators® 2019-20 Adult Family Survey (AFS). The data shown are weighted NCI averages. These data are comprised of 19,183 valid surveys collected across 14 states: Arizona (AZ), California (CA), Delaware (DE), District of Columbia (DC), Florida (FL), Georgia (GA), Maryland (MD), Missouri (MO), New Hampshire (NH), North Carolina (NC), Oklahoma (OK), Pennsylvania (PA), South Dakota (SD), Washington (WA).

What is the NCI Adult Family Survey?

The NCI Adult Family Survey is used to gather data on family outcomes. It is mailed to families who have an adult family member who lives with the respondent and receives at least one service in addition to case management from the state DD agency. The survey collects demographic information on both the individual receiving services (‘family member’) 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 family member’s demographics, diagnoses, and personal characteristics.

Note: All qualified Californians with a developmental disability have both a civil right and an individual entitlement to receive services from the California Department of Developmental Services. California law mandates that the intake process begin within 15 days of an individual’s or family’s request for services and that the Department of Developmental Services begin providing services within 120 days after intake. These statutory requirements make California’s service system unique and could impact comparisons between its survey results and the results of other states.

Important note on Impact of COVID-19

The 2019-20 NCI Family Survey data collection cycle began July 1, 2019 and ended June 30, 2020. Midway through data collection, in February 2020, COVID-19 began to spread across the United States. Data collection for the NCI Family Surveys continued throughout the pandemic. States begin data collection at various times throughout the year – some before the pandemic started and some after. 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 the onset of COVID-19 impacted state samples. For instance, we do not know if certain populations were more or less likely to respond to the survey after February and we do not know whether or how responses were affected for specific questions for those who completed the survey after the pandemic began. While these data will serve as an important baseline, and meaningful way for states to understand the overall impact of services on families of individuals being served, these data should be read with caution.

What is included in this report?

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

1. Outcomes where the state is significantly above the NCI average are denoted with an up arrow ▲;
2. Outcomes where the state is significantly below the NCI 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 average). The charts are followed by accessible tables containing the same information.

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

Demographics - Family Member

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

Table 2. Family Member's Age

Table 3. Family Member's Gender

Table 4. Family Member's Race and Ethnicity

Table 5a. Family Member's Disabilities

Table 5b. Family Member's Disabilities (continued)

Table 6a. Family Member's Health Conditions

Table 6b. Family Member's Health Conditions (continued)

Table 7. Family Member's Preferred Means of Communication

Table 8. Family Member Has Legal Court Appointed Guardian or Conservator

Table 9. Guardian or Conservator Relationship to Family Member

Table 10. Family Member's Highest Level of Education

Table 11. Family Member's Activities in the Past Two Weeks Included Paid Individual Job in the Community

Table 12. Family Member's Activities in the Past Two Weeks Included Paid Small Group Job in a Community-based Setting

Table 13. Family Member's Activities in the Past Two Weeks Included Paid Work in a Community Job That Primarily Hires People With Disabilities

Table 14. Family Member's Activities in the Past Two Weeks Included Unpaid Activity in the Community

Table 15. Family Member's Activities in the Past Two Weeks Included Paid Activity in a Facility-based Setting

Table 16. Family Member's Activities in the Past Two Weeks Included Unpaid Activity in a Facility-based Setting

Table 17. Family Member's Activities in the Past Two Weeks Included School

Table 18. Family Member's Activities in the Past Two Weeks Included Stay at Home

Table 19. Family Member's Activities in the Past Two Weeks Included Other Activities

Table 20. Family Member's Support Needs for Self-Injurious, Disruptive, and/or Destructive Behaviors

Table 21. Family Member's Level of Help Needed with Personal Care Activities (for example, bathing, dressing, eating)

Table 22. Family Member's Need for Help with Other Daily Activities (for example, scheduling, managing money, or shopping)

Demographics - Respondents

Table 23. Language Usually Spoken at Home

Table 24. Respondent's Age

Table 25. Respondent's Health

Table 26. Respondent's Relationship to Family Member

Table 27. Respondent or Other Family Member Provides Paid Support to Family Member Receiving Services

Table 28. Number of Adults in Household (Not Including Family Member Receiving Services)

Table 29. Number of Children (Under 18 Years Old) in Household

Table 30. Respondent's Highest Level of Education

Table 31. Total Taxable Household Income of Wage Earners in the Past Year

Table 32. Residential Designation (Urban, Suburban, or Rural)

Demographics - Services and Supports Received

Table 33. Services and Supports Received From IDD Agency

Table 34. Additional Services and Supports Received (not from the IDD Agency)

Information and Planning

Information and Planning Tables

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

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 (for example, food stamps, SSI, housing subsidies, etc.)

Table Q5. Do you need help planning for your family member'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 family member have a service plan?

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

Table Q9. Does your family member get all the services listed in the plan?

Table Q10. Did you or someone else in your family (besides your family member with a disability) help make the plan?

Table Q11. Did your family member help make the service plan?

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

Table Q13. If your family member left school services during the past year, did he or she have a transition plan?

Table Q14. If family member had a transition plan, did the transition plan include getting or continuing work in a community job?

Table Q15. Does your family member have enough supports (for example, support workers, community resources) to work or volunteer in the community?

Table Q16. Do you feel prepared to handle the needs of your family member in an emergency such as a medical emergency or natural disaster?

Access and Delivery of Services and Supports

Access and Delivery of Services and Supports Tables

Table Q17. Are you or your family member able to contact his or her support workers when you want?

Table Q18. Are you or your family member able to contact his or her case manager when you want?

Table Q19. Do support workers come and go when they are supposed to?

Table Q20. Do services and supports change when your family's needs change?

Table Q21. Do support workers speak to you in a way you understand?

Table Q22. Are services delivered in a way that is respectful of your family's culture?

Table Q23. If your family member does not communicate verbally (for example, uses gestures, sign language, or a communication aid), are there support workers who can communicate with him or her?

Table Q24. Do support workers have the right information and skills to meet your family's needs?

Table Q25. Does your family member have the special equipment or accommodations that he or she needs?

Table Q26. Can your family member see health professionals when needed?

Table Q27. Does your family member's primary care doctor understand your family member's needs related to his or her disability?

Table Q28. Can your family member go to the dentist when needed?

Table Q29. Does your family member's dentist understand your family member's needs related to his or her disability?

Table Q30. If your family member takes medications, do you know what they're for?

Table Q31. Do you, your family member, or someone else in your family know what is needed to safely take the medications (when it should be taken, how much to take, and the potential side effects)?

Table Q32. If your family member uses mental health services, does the mental health professional understand your family member's needs related to his or her disability?

Table Q33. If you need respite services, how often are you able to use them?

Table Q34. If you have used respite services in the past year, were you satisfied with the quality of the respite services?

Table Q35. Does your family get the supports and services it needs?

Table Q36. 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 Q37. Can your family choose or change the agency that provides your family member's services?

Table Q38. Can your family choose or change your family member's support workers?

Table Q39. Does your family directly manage support staff?

Table Q40. Do service providers for your family member work together to provide support?

Table Q41. Did you, your family member, or someone else in your family choose your family member's case manager?

Involvement in the Community

Involvement in the Community Tables

Table Q42. Does your family member take part in activities in the community?

Table Q43. For your family member, what makes it hard to take part in activities in the community?

Table Q44. Does your family member have friends other than paid support workers or family?

Table Q45. In your community, are there resources that your family can use that are not provided by the IDD agency?

Table Q46. Does your family take part in any family-to-family networks in your community?

Satisfaction With Services and Supports

Satisfaction With Services and Supports Tables

Table Q47. Overall, are you satisfied with the services and supports your family member currently receives?

Table Q48. Do you know how to file a complaint or grievance about provider agencies or staff?

Table Q49. If a complaint or grievance was filed or resolved in the past year, are you satisfied with the way it was handled?

Table Q50. Do you know how to report abuse or neglect related to your family member?

Table Q51. Within the past year, was a report of abuse or neglect filed on behalf of your family member?

Table Q52. If a report of abuse or neglect was filed on behalf of family member, did the appropriate people respond to the report?

Table Q53. If a report of abuse or neglect was filed on behalf of family member, if someone other than you or another family member reported abuse or neglect in the past year, were you notified of the report in a timely manner?

Table Q54. Do you feel that services and supports have made a positive difference in the life of your family member?

Table Q55. Have services and supports reduced your family's out-of-pocket expenses for your family member's care?

Table Q56. Have the services or supports that your family member 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 in services affect your family member negatively?

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

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