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:

Outcomes where the state is significantly above the NCI-IDD average are denoted with an up arrow ▲;
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

State	Yes	No	N
OR	25%	75%	639
Weighted NCI-IDD Average	24%	76%	4578

Table 2. Child's Age

State	Average Age	N
OR	11.9	651
Weighted NCI-IDD Average	11.3	4654

Table 3. Child's Gender

State	Male	Female	N
OR	69%	31%	653
Weighted NCI-IDD Average	67%	33%	4650

Table 4a. Child's Disabilities

All data are reported by the respondent based on their understanding of their child's demographics, diagnoses and personal characteristics. Categories are not mutually exclusive, therefore N is not shown.

State	Intellectual Disability	Mental Illness or Psychiatric Disorder	Autism Spectrum Disorder	Cerebral Palsy	Limited or No Vision	Severe or Profound Hearing Loss
OR	52%	27%	56%	11%	8%	5%
Weighted NCI-IDD Average	53%	23%	58%	14%	12%	7%

Table 4b. Child's Disabilities (continued)

State	Brain Injury	Seizure Disorder or Neurological Problem	Chemical Dependency	Down Syndrome	Prader-Willi Syndrome	Fetal Alcohol Spectrum Disorder	Other
OR	9%	17%	1%	11%	1%	6%	26%
Weighted NCI-IDD Average	9%	24%	2%	11%	0%	2%	30%

Table 5a. Child's Health Conditions

State	Cardiovascular Disease	Diabetes	Cancer	High Blood Pressure	High Cholesterol
OR	7%	3%	3%	4%	8%
Weighted NCI-IDD Average	13%	4%	2%	6%	5%

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

State	Dysphagia	Pressure Ulcers	Oral Health Problems	Sleep Apnea	Other
OR	27%	3%	16%	35%	40%
Weighted NCI-IDD Average	25%	3%	16%	33%	46%

Table 6. Child's Race and Ethnicity

State	American Indian or Alaska Native	Asian	Black or African American	Hawaiian or Pacific Islander	White	Hispanic or Latino	Other
OR	6%	6%	5%	1%	79%	18%	2%
Weighted NCI-IDD Average	3%	5%	14%	1%	65%	27%	2%

Table 7. Child's Preferred Means of Communication

State	Spoken	Gestures or Body Language	Sign Language or Finger Spelling	Communication Aid or Device	Other	N
OR	74%	16%	2%	4%	4%	645
Weighted NCI-IDD Average	66%	18%	4%	6%	6%	4564

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

All data are reported by the respondent based on their understanding of their child's demographics, diagnoses and personal characteristics.

State	None	Some	Extensive	N
OR	26%	49%	25%	649
Weighted NCI-IDD Average	33%	41%	26%	4571

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

All data are reported by the respondent based on their understanding of their child's demographics, diagnoses and personal characteristics.

State	None	Some	Extensive	N
OR	6%	45%	49%	656
Weighted NCI-IDD Average	6%	38%	56%	4618

Demographics - Respondents

Table 10. Language usually spoken at home

State	English	Spanish	Other	N
OR	86%	9%	5%	656
Weighted NCI-IDD Average	86%	10%	4%	4614

Table 11. Respondent's Age

State	Under 35	35-54	55-74	75 and Older	N
OR	10%	72%	17%	1%	659
Weighted NCI-IDD Average	15%	69%	15%	1%	4650

Table 12. Respondent's Health

State	Excellent	Very Good	Fairly Good	Poor	N
OR	18%	43%	33%	5%	657
Weighted NCI-IDD Average	17%	47%	31%	6%	4652

Table 13. Respondent's Relationship to Child

Categories are not mutually exclusive

State	Parent	Sibling	Grandparent	Other	N
OR	91%	0%	6%	2%	659
Weighted NCI-IDD Average	93%	0%	5%	2%	4657

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

State	No	Respondent	Other Family Member	N
OR	62%	9%	30%	653
Weighted NCI-IDD Average	67%	15%	20%	4645

Table 15. Number of Adults in Household

State	One	Two	Three	Four or More	N
OR	18%	57%	16%	8%	655
Weighted NCI-IDD Average	21%	54%	19%	6%	4629

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

State	One	Two	Three	Four or More	N
OR	37%	38%	16%	9%	651
Weighted NCI-IDD Average	38%	34%	17%	12%	4544

Table 17. Respondent's Highest Level of Education

State	No High School Diploma or GED	High School Diploma or GED	Vocational School or Certificate Program	Some College	College Degree or Higher	N
OR	7%	15%	5%	24%	49%	642
Weighted NCI-IDD Average	9%	16%	6%	21%	48%	4605

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

State	No Earned Income	Up to $15,000	$15,001 to $25,000	$25,001 to $50,000	$50,001 to $75,000	Over $75,000	Prefer Not to Say	N
OR	8%	6%	11%	18%	17%	30%	10%	646
Weighted NCI-IDD Average	8%	11%	11%	17%	15%	27%	11%	4588

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

State	Urban or Suburban (In or Near a City or Large Town)	Rural (Outside of a City or Town)	N
OR	75%	25%	635
Weighted NCI-IDD Average	72%	28%	4532

Demographics - Services and Supports Received

Table 20. Services and Supports Received From IDD Agency

All data are reported by the respondent based on their understanding of their family member's demographics, diagnoses and personal characteristics; categories are not mutually exclusive, therefore N is not shown.

State	Financial Support	In-home Support	Out-of-Home respite care	Early Intervention	Transportation	Other	Self-Direction or Fiscal Intermediary Services
OR	16%	77%	38%	6%	14%	67%	60%
Weighted NCI-IDD Average	19%	59%	33%	13%	16%	74%	36%

Table 21. Other Services or Supports Received

State	Social Security Payments (SSI/SSB)	Services or Supports from Other Agencies or Organizations
OR	38%	75%
Weighted NCI-IDD Average	44%	65%

Information and Planning

Information and Planning Tables

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

State	Always	Usually	Sometimes	Seldom or Never	N
OR	35%	44%	17%	4%	637
Weighted NCI-IDD Average	37%	37%	19%	8%	4502

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

State	Always	Usually	Sometimes	Seldom or Never	N
OR	23%	52%	21%	3%	644
Weighted NCI-IDD Average	27%	43%	24%	5%	4477

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

State	Always	Usually	Sometimes	Seldom or Never	N
OR	74%	21%	4%	1%	643
Weighted NCI-IDD Average	74%	19%	5%	2%	4479

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

State	Always	Usually	Sometimes	Seldom or Never	N
OR	30%	38%	21%	11%	558
Weighted NCI-IDD Average	31%	30%	21%	18%	3996

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

Categories are not mutually exclusive, therefore N is not shown.

State	Employment	Financial	Housing	Legal	Medical	Social or Relationships	Transition From School	Recreation or Having Fun	Other
OR	56%	56%	47%	42%	42%	56%	57%	53%	11%
Weighted NCI-IDD Average	54%	57%	49%	49%	47%	54%	58%	55%	9%

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

State	Yes	No	N
OR ▼	48%	52%	137
Weighted NCI-IDD Average	62%	38%	1328

Table Q7. Does your child have a service plan?

State	Yes	No	N
OR ▲	86%	14%	557
Weighted NCI-IDD Average	74%	26%	4000

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

State	Yes	No	N
OR	90%	10%	422
Weighted NCI-IDD Average	87%	13%	2774

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

State	Yes	No	N
OR	85%	15%	412
Weighted NCI-IDD Average	82%	18%	2772

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

State	Yes	No	N
OR	89%	11%	457
Weighted NCI-IDD Average	90%	10%	2948

Table Q11. Did your child help make the plan?

State	Yes	No	N
OR	21%	79%	453
Weighted NCI-IDD Average	18%	82%	2943

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?

State	Yes	No	N
OR ▲	61%	39%	403
Weighted NCI-IDD Average	55%	45%	2681

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)?

State	Yes	No	N
OR	60%	40%	232
Weighted NCI-IDD Average	53%	47%	1999

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

State	Yes	No	N
OR	94%	6%	118
Weighted NCI-IDD Average	92%	8%	971

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?

State	Yes	No	N
OR	79%	21%	565
Weighted NCI-IDD Average	84%	16%	4200

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?

State	Always	Usually	Sometimes	Seldom or Never	N
OR	56%	36%	7%	1%	618
Weighted NCI-IDD Average	57%	31%	9%	3%	4281

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

State	Always	Usually	Sometimes	Seldom or Never	N
OR ▼	56%	33%	10%	2%	649
Weighted NCI-IDD Average	61%	27%	9%	3%	4460

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

State	Always	Usually	Sometimes	Seldom or Never	N
OR	59%	32%	7%	1%	584
Weighted NCI-IDD Average	61%	29%	7%	3%	3925

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

State	Always	Usually	Sometimes	Seldom or Never	N
OR	35%	44%	15%	6%	544
Weighted NCI-IDD Average	40%	36%	16%	8%	3878

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

State	Always	Usually	Sometimes	Seldom or Never	N
OR	78%	18%	3%	0%	613
Weighted NCI-IDD Average	74%	21%	4%	1%	4160

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

State	Always	Usually	Sometimes	Seldom or Never	N
OR ▲	88%	11%	1%	0%	640
Weighted NCI-IDD Average	82%	15%	2%	1%	4448

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?

State	Always	Usually	Sometimes	Seldom or Never	N
OR	33%	28%	28%	12%	58
Weighted NCI-IDD Average	43%	24%	20%	12%	579

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

State	Always	Usually	Sometimes	Seldom or Never	N
OR	49%	37%	12%	2%	603
Weighted NCI-IDD Average	49%	36%	12%	4%	4105

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

State	Always	Usually	Sometimes	Seldom or Never	N
OR ▼	33%	44%	18%	5%	387
Weighted NCI-IDD Average	42%	32%	17%	9%	3006

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

State	Always	Usually	Sometimes	Seldom or Never	N
OR ▼	63%	31%	6%	1%	653
Weighted NCI-IDD Average	70%	23%	6%	1%	4552

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

State	Always	Usually	Sometimes	Seldom or Never	N
OR ▼	49%	36%	12%	2%	645
Weighted NCI-IDD Average	62%	27%	9%	2%	4504

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

State	Always	Usually	Sometimes	Seldom or Never	N
OR ▼	59%	26%	9%	6%	654
Weighted NCI-IDD Average	71%	20%	5%	4%	4504

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

State	Always	Usually	Sometimes	Seldom or Never	N
OR ▼	50%	33%	11%	6%	609
Weighted NCI-IDD Average	61%	26%	10%	4%	4217

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

State	Always	Usually	Sometimes	Seldom or Never	N
OR	94%	3%	1%	1%	489
Weighted NCI-IDD Average	93%	4%	1%	1%	3827

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

State	Always	Usually	Sometimes	Seldom or Never	N
OR ▲	95%	4%	1%	0%	481
Weighted NCI-IDD Average	92%	7%	1%	1%	3793

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

State	Always	Usually	Sometimes	Seldom or Never	N
OR	51%	34%	8%	7%	271
Weighted NCI-IDD Average	57%	29%	9%	5%	2064

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

State	Always	Usually	Sometimes	Seldom or Never	N
OR ▼	27%	23%	20%	30%	506
Weighted NCI-IDD Average	32%	21%	19%	27%	3226

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

State	Always	Usually	Sometimes	Seldom or Never	N
OR	66%	22%	7%	5%	361
Weighted NCI-IDD Average	64%	20%	10%	6%	2341

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

State	Yes	No	N
OR	74%	26%	567
Weighted NCI-IDD Average	73%	27%	4180

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

Categories are not mutually exclusive, therefore N is not shown.

State	Respite	Regularly Scheduled Support for Child	Homemaker Services	Home or Vehicle Modifications	Counseling	Family-to-Family Networks	Other
OR	58%	42%	26%	20%	28%	28%	36%
Weighted NCI-IDD Average	55%	40%	25%	24%	33%	33%	38%

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?

State	Always	Usually	Sometimes	Seldom or Never	N
OR	61%	24%	8%	6%	404
Weighted NCI-IDD Average	66%	21%	7%	6%	3368

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

State	Always	Usually	Sometimes	Seldom or Never	N
OR ▲	72%	17%	7%	3%	546
Weighted NCI-IDD Average	65%	19%	8%	8%	3409

Table Q38. Does your family manage support workers?

State	Always	Usually	Sometimes	Seldom or Never	N
OR ▲	73%	17%	7%	4%	569
Weighted NCI-IDD Average	59%	18%	10%	13%	3500

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

State	Yes	No	N
OR	80%	20%	307
Weighted NCI-IDD Average	80%	20%	2635

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

State	Yes, chose case manager	No, didn't choose but can change if wanted	No, didn't choose and cannot change if wanted	N
OR	20%	61%	19%	532
Weighted NCI-IDD Average	18%	64%	18%	3655

Involvement in the Community

Involvement in the Community Tables

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

State	Yes	No	N
OR	71%	29%	635
Weighted NCI-IDD Average	70%	30%	4476

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

Categories are not mutually exclusive, therefore N is not shown

State	Lack of Transportation	Cost	Lack of Support Staff	Stigma	Other
OR	7%	22%	24%	30%	43%
Weighted NCI-IDD Average	9%	22%	22%	29%	48%

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

State	Yes	No	N
OR	85%	15%	648
Weighted NCI-IDD Average	84%	16%	4514

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.)?

State	Yes	No	N
OR	77%	23%	454
Weighted NCI-IDD Average	77%	23%	3429

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

State	Yes	No	N
OR	22%	78%	564
Weighted NCI-IDD Average	20%	80%	3940

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?

State	Always	Usually	Sometimes	Seldom or Never	N
OR ▼	27%	55%	15%	4%	644
Weighted NCI-IDD Average	36%	43%	17%	5%	4492

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

Don't Know responses were included in 'No' responses for this question.

State	Yes	No or Don't Know	N
OR	59%	41%	656
Weighted NCI-IDD Average	59%	41%	4540

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

State	Yes	No or Don't Know	N
OR	59%	41%	37
Weighted NCI-IDD Average	60%	40%	629

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