Child Family Survey (CFS) 2019-20 State Report

Missouri (MO) Report

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 Child Family Survey (CFS). The data shown are weighted NCI averages. These data are comprised of 3,056 valid surveys collected across eight states: Arizona (AZ), Colorado (CO), Louisiana (LA), Missouri (MO), North Carolina (NC), Oregon (OR), Utah (UT), and Wisconsin (WI).

What is the NCI Child Family Survey?

The NCI 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 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 Family/Guardian 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 Child Family Survey, data analysis and state samples, check out the National Adult Family Survey Report

Demographics - Family Member

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

State Yes No N
MO 27% 73% 223
Weighted NCI Average 21% 79% 2949


Table 2. Child's Age

State Average Age N
MO 11.9 230
Weighted NCI Average 12.0 3035


Table 3. Child's Gender

State Male Female N
MO 78% 22% 230
Weighted NCI Average 67% 33% 2988


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
MO 33% 31% 88% 6% 4% 1%
Weighted NCI Average 49% 19% 58% 15% 8% 5%


Table 4b. Child's Disabilities (continued)

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 Brain Injury Seizure Disorder or Neurological Problem Chemical Dependency Down Syndrome Prader-Willi Syndrome Fetal Alcohol Spectrum Disorder Other
MO 2% 17% 0% 3% 0% 1% 29%
Weighted NCI Average 7% 20% 0% 13% 1% 2% 28%


Table 5a. Child's Health Conditions

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 Cardiovascular Disease Diabetes Cancer High Blood Pressure High Cholesterol
MO 10% 1% 6% 6% 4%
Weighted NCI Average 18% 5% 3% 6% 7%


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

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 Dysphagia Pressure Ulcers Oral Health Problems Sleep Apnea Other
MO 20% 0% 8% 28% 41%
Weighted NCI Average 24% 1% 11% 25% 41%


Table 6. Child's Race and Ethnicity

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 American Indian or Alaska Native Asian Black or African American Hawaiian or Pacific Islander White Hispanic or Latino Other
MO 4% 5% 12% 1% 85% 4% 2%
Weighted NCI Average 3% 5% 13% 0% 72% 18% 1%


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
MO 80% 10% 1% 7% 2% 216
Weighted NCI Average 69% 20% 3% 5% 4% 2983


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
MO 32% 50% 18% 223
Weighted NCI Average 34% 42% 24% 2958


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
MO 16% 49% 34% 227
Weighted NCI Average 7% 41% 52% 3004


Demographics - Respondents

Table 10. Language usually spoken at home

State English Spanish Other N
MO 97% 2% 1% 229
Weighted NCI Average 92% 6% 2% 3023


Table 11. Respondent's Age

State Under 35 35-54 55-74 75 and Older N
MO 14% 76% 10% 0% 229
Weighted NCI Average 12% 71% 16% 1% 3034


Table 12. Respondent's Health

State Excellent Very Good Fairly Good Poor N
MO 17% 49% 29% 5% 230
Weighted NCI Average 20% 48% 28% 3% 3042




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

Categories are not mutually exclusive. Responses to this question might have been impacted by the COVID-19 pandemic.
State Respondent Other Family Member No N
MO 3% 12% 85% 229
Weighted NCI Average 8% 14% 79% 3012


Table 15. Number of Adults in Household

State One Two Three Four or More N
MO 25% 58% 13% 4% 227
Weighted NCI Average 18% 59% 17% 6% 3024


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
MO 35% 42% 17% 7% 223
Weighted NCI Average 40% 35% 16% 8% 2929


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
MO 4% 13% 8% 19% 57% 227
Weighted NCI Average 6% 14% 7% 20% 52% 3017


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
MO 8% 6% 8% 22% 20% 25% 11% 226
Weighted NCI Average 7% 8% 9% 17% 15% 31% 14% 3007


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

State Urban or Suburban Rural N
MO 72% 28% 227
Weighted NCI Average 69% 31% 2944


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. Responses to this question might have been impacted by the COVID-19 pandemic.
State Financial Support Out-of-home Respite Early Intervention Transportation Other Self-direction or Fiscal Intermediary Services
MO 30% 27% 5% 17% 77% 28%
Weighted NCI Average 18% 40% 12% 22% 75% 34%


Table 21. Other Services or Supports Received

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. Responses to this question might have been impacted by the COVID-19 pandemic.
State Social Security Payments (SSI/SSB) Services or Supports from Other Agencies or Organizations
MO 35% 79%
Weighted NCI Average 38% 68%


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
MO ▼ 23% 47% 23% 7% 223
Weighted NCI Average 33% 39% 21% 6% 2918


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

State Always Usually Sometimes Seldom or Never N
MO 23% 50% 24% 3% 219
Weighted NCI Average 24% 46% 24% 6% 2940


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

State Always Usually Sometimes Seldom or Never N
MO 64% 29% 5% 2% 217
Weighted NCI Average 68% 24% 6% 2% 2906


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
MO 26% 32% 22% 21% 180
Weighted NCI Average 25% 35% 22% 19% 2426


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
MO 66% 58% 50% 51% 45% 61% 63% 48% 9%
Weighted NCI Average 55% 59% 48% 50% 44% 53% 59% 51% 8%


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

Responses to this question might have been impacted by the COVID-19 pandemic.
State Yes No N
MO 66% 34% 35
Weighted NCI Average 46% 54% 637


Table Q7. Does your child have a service plan?

State Yes No N
MO 76% 24% 206
Weighted NCI Average 74% 26% 2553


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

State Yes No N
MO 80% 20% 141
Weighted NCI Average 85% 15% 1781


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

State Yes No N
MO 79% 21% 146
Weighted NCI Average 76% 24% 1809


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

State Yes No N
MO 94% 6% 155
Weighted NCI Average 92% 8% 1946


Table Q11. Did your child help make the plan?

State Yes No N
MO ▲ 32% 68% 152
Weighted NCI Average 18% 82% 1965


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?

Responses to this question might have been impacted by the COVID-19 pandemic.
State Yes No N
MO 53% 47% 142
Weighted NCI Average 51% 49% 1770


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

State Yes No N
MO 58% 42% 77
Weighted NCI Average 64% 36% 1013


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

State Yes No N
MO 93% 7% 42
Weighted NCI Average 90% 10% 596


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?

Responses to this question might have been impacted by the COVID-19 pandemic.
State Yes No N
MO 76% 24% 209
Weighted NCI Average 83% 17% 2679


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
MO 44% 46% 7% 3% 192
Weighted NCI Average 53% 34% 11% 2% 2757


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

State Always Usually Sometimes Seldom or Never N
MO 49% 38% 9% 4% 217
Weighted NCI Average 55% 30% 12% 3% 2876


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

Responses to this question might have been impacted by the COVID-19 pandemic.
State Always Usually Sometimes Seldom or Never N
MO 59% 30% 8% 4% 171
Weighted NCI Average 56% 32% 10% 2% 2571


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

Responses to this question might have been impacted by the COVID-19 pandemic.
State Always Usually Sometimes Seldom or Never N
MO 30% 43% 16% 11% 171
Weighted NCI Average 32% 42% 19% 6% 2439


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

State Always Usually Sometimes Seldom or Never N
MO 68% 27% 5% 0% 183
Weighted NCI Average 71% 25% 4% 0% 2692


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

State Always Usually Sometimes Seldom or Never N
MO 76% 20% 3% 1% 210
Weighted NCI Average 77% 19% 3% 1% 2880


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?

Responses to this question might have been impacted by the COVID-19 pandemic.
State Always Usually Sometimes Seldom or Never N
MO 35% 30% 0% 35% 20
Weighted NCI Average 32% 37% 14% 17% 349


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

Responses to this question might have been impacted by the COVID-19 pandemic.
State Always Usually Sometimes Seldom or Never N
MO 37% 45% 17% 1% 178
Weighted NCI Average 43% 40% 13% 4% 2656


Table Q24. Does your child have the special equipment or accommodations that he or she needs?

Responses to this question might have been impacted by the COVID-19 pandemic.
State Always Usually Sometimes Seldom or Never N
MO 35% 46% 10% 9% 105
Weighted NCI Average 34% 39% 17% 10% 1765


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

Responses to this question might have been impacted by the COVID-19 pandemic.
State Always Usually Sometimes Seldom or Never N
MO 67% 26% 5% 2% 229
Weighted NCI Average 71% 23% 5% 1% 3006


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

State Always Usually Sometimes Seldom or Never N
MO ▼ 47% 35% 14% 3% 219
Weighted NCI Average 62% 28% 8% 1% 2968


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

Responses to this question might have been impacted by the COVID-19 pandemic.
State Always Usually Sometimes Seldom or Never N
MO 67% 23% 6% 4% 220
Weighted NCI Average 71% 19% 5% 4% 2942


Table Q28. Does your child's dentist understand your child's needs related to his or her disability?

State Always Usually Sometimes Seldom or Never N
MO ▼ 51% 33% 14% 2% 206
Weighted NCI Average 61% 28% 9% 3% 2719


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

State Always Usually Sometimes Seldom or Never N
MO 92% 8% 1% 0% 178
Weighted NCI Average 93% 5% 1% 1% 2330


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
MO 94% 6% 0% 0% 178
Weighted NCI Average 94% 6% 0% 0% 2325


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

State Always Usually Sometimes Seldom or Never N
MO 54% 38% 8% 1% 114
Weighted NCI Average 51% 31% 12% 5% 1198


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

Responses to this question might have been impacted by the COVID-19 pandemic.
State Always Usually Sometimes Seldom or Never N
MO ▼ 12% 28% 26% 35% 130
Weighted NCI Average 28% 26% 22% 24% 2135


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

Responses to this question might have been impacted by the COVID-19 pandemic.
State Always Usually Sometimes Seldom or Never N
MO 57% 28% 10% 4% 89
Weighted NCI Average 62% 25% 9% 5% 1727


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

Responses to this question might have been impacted by the COVID-19 pandemic.
State Yes No N
MO 66% 34% 204
Weighted NCI Average 71% 29% 2732


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. Responses to this question might have been impacted by the COVID-19 pandemic.
State Respite Regularly scheduled support for family member Homemaker services Home or vehicle modifications Counseling Family-to-family networks Other
MO 63% 37% 17% 11% 27% 27% 23%
Weighted NCI Average 54% 38% 19% 18% 28% 27% 36%


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?

Responses to this question might have been impacted by the COVID-19 pandemic.
State Always Usually Sometimes Seldom or Never N
MO ▼ 40% 27% 15% 18% 131
Weighted NCI Average 59% 26% 9% 6% 1865


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

Responses to this question might have been impacted by the COVID-19 pandemic.
State Always Usually Sometimes Seldom or Never N
MO ▼ 44% 28% 15% 13% 121
Weighted NCI Average 60% 26% 9% 5% 2031


Table Q38. Does your family manage support workers?

State Always Usually Sometimes Seldom or Never N
MO ▼ 38% 22% 14% 26% 125
Weighted NCI Average 51% 23% 14% 13% 2122


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

Responses to this question might have been impacted by the COVID-19 pandemic.
State Yes No N
MO 68% 32% 100
Weighted NCI Average 77% 23% 1398


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
MO ▼ 9% 59% 32% 193
Weighted NCI Average 17% 63% 20% 2457


Involvement in the Community











Involvement in the Community Tables

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

Responses to this question might have been impacted by the COVID-19 pandemic.
State Yes No N
MO 83% 17% 230
Weighted NCI Average 82% 18% 2950


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

Responses to this question might have been impacted by the COVID-19 pandemic.
State Lack of Transportation Cost Lack of Support Staff Stigma Other
MO 5% 25% 21% 33% 39%
Weighted NCI Average 10% 24% 23% 27% 40%


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

State Yes No N
MO 91% 9% 227
Weighted NCI Average 87% 13% 2968


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.)?

Responses to this question might have been impacted by the COVID-19 pandemic.
State Yes No N
MO 86% 14% 176
Weighted NCI Average 81% 19% 2292


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

Responses to this question might have been impacted by the COVID-19 pandemic.
State Yes No N
MO ▼ 13% 87% 202
Weighted NCI Average 20% 80% 2584


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?

Responses to this question might have been impacted by the COVID-19 pandemic.
State Always Usually Sometimes Seldom or Never N
MO 23% 45% 24% 8% 224
Weighted NCI Average 29% 48% 18% 5% 2952


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
MO ▼ 50% 50% 226
Weighted NCI Average 59% 41% 3004


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

MO's data are not included in the table due to low N (<20), but their responses are included in the NCI Average
State Yes No N
MO n/a n/a n/a
Weighted NCI Average 56% 44% 227


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

Don't Know responses were included in "No" responses for this question.
State Yes No or Don't Know N
MO 83% 17% 230
Weighted NCI Average 80% 20% 2988


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

State Yes No N
MO 5% 95% 226
Weighted NCI Average 3% 97% 2935


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?

MO's data are not included in the table due to low N (<20), but their responses are included in the NCI Average
State Yes No N
MO n/a n/a n/a
Weighted NCI Average 86% 14% 95


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?

MO's data are not included in the table due to low N (<20), but their responses are included in the NCI Average
State Yes No N
MO n/a n/a n/a
Weighted NCI Average 90% 10% 73


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

Responses to this question might have been impacted by the COVID-19 pandemic.
State Yes No N
MO 88% 12% 199
Weighted NCI Average 93% 7% 2740


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

Responses to this question might have been impacted by the COVID-19 pandemic.
State Yes No N
MO ▼ 61% 39% 209
Weighted NCI Average 78% 22% 2771


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

State Yes No N
MO 81% 19% 192
Weighted NCI Average 88% 12% 2770


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

Responses to this question might have been impacted by the COVID-19 pandemic.
State Yes No N
MO 31% 69% 206
Weighted NCI Average 23% 77% 2810


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?

Responses to this question might have been impacted by the COVID-19 pandemic.
State Yes No N
MO 75% 25% 59
Weighted NCI Average 76% 24% 507


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

Responses to this question might have been impacted by the COVID-19 pandemic.
State Yes No N
MO ▼ 11% 89% 209
Weighted NCI Average 21% 79% 2693


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

Responses to this question might have been impacted by the COVID-19 pandemic.
State Yes No N
MO 90% 10% 189
Weighted NCI Average 94% 6% 2739


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