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 Family/Guardian Survey (FGS). The data shown are weighted NCI averages. These data are comprised of 9,435 valid surveys collected across 11 states: Arizona (AZ), California (CA), Florida (FL), Georgia (GA), Maryland (MD), Minnesota (MN), New Hampshire (NH), North Carolina (NC), Pennsylvania (PA), South Dakota (SD), and Utah (UT).
What is the NCI Family/Guardian Survey?
The NCI Family/Guardian Survey is used to gather data on family outcomes. It is mailed to families who have an adult family member who does not live 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 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:
Outcomes where the state is significantly above the NCI average are denoted with an up arrow ▲;
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 Family/Guardian Survey, data analysis and state samples, check out the National Adult Family Survey Report
Demographics - Family Member
Table 1. Family Member's Residence
All data are reported by the respondent based on their understanding of their family member's demographics, diagnoses and personal characteristics.
State
Specialized Facility for People With Intellectual Disabilities
Group Home or Agency-Operated Apartment
Independent Home or Apartment
Adult Foster Care or Host Family Home
Nursing Home
Homeless
Other
N
PA
21%
71%
2%
4%
1%
0%
1%
651
Weighted NCI Average
12%
59%
19%
8%
1%
0%
2%
9233
Table 2. Family Member's Residential Designation
State
Urban or suburban (in or near a city or large town)
Rural (outside of a city or town)
N
PA
70%
30%
641
Weighted NCI Average
84%
16%
9121
Table 3. Family Member's Age
State
Average Age
N
PA
48.5
659
Weighted NCI Average
45.4
9163
Table 4. Family Member's Gender
State
Male
Female
N
PA
58%
42%
666
Weighted NCI Average
60%
40%
9353
Table 5. Family Member's Race and Ethnicity
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
American Indian or Alaska Native
Asian
Black or African American
Pacific Islander
White
Hispanic or Latino
Other
PA
1%
1%
5%
0%
92%
2%
1%
Weighted NCI Average
2%
3%
11%
0%
80%
6%
2%
Table 6a. Family Member's Disabilities
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
Intellectual Disability
Mental Illness or Psychiatric Diagnosis
Autism Spectrum Disorder
Cerebral Palsy
Limited or No Vision
Severe or Profound Hearing Loss
PA
84%
44%
30%
18%
11%
8%
Weighted NCI Average
75%
36%
28%
16%
8%
6%
Table 6b. Family Member's Disabilities (continued)
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
Brain Injury
Seizure Disorder or Neurological Problem
Chemical Dependency
Down Syndrome
Prader-Willi Syndrome
Fetal Alcohol Spectrum Disorder
Other Disabilities
PA
11%
32%
0%
11%
1%
1%
10%
Weighted NCI Average
10%
27%
1%
10%
1%
2%
13%
Table 7a. Family Member's Health Conditions
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
Cardiovascular Disease
Diabetes
Cancer
High Blood Pressure
High Cholesterol
PA
10%
16%
4%
25%
31%
Weighted NCI Average
10%
19%
6%
31%
31%
Table 7b. Family Member's Health Conditions (continued)
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
Dysphagia
Pressure Ulcers
Alzheimer's Disease or Dementia
Oral Health Problems
Sleep Apnea
Other
PA
23%
3%
8%
16%
16%
17%
Weighted NCI Average
11%
2%
5%
16%
14%
23%
Table 8. Family Member's Preferred Means of Communication
State
Spoken
Gestures or Body Language
Sign Language or Finger Spelling
Communication Aid or Device
Other
N
PA
64%
25%
3%
3%
6%
659
Weighted NCI Average
77%
16%
2%
2%
4%
9221
Table 9. Family Member Has Legal Court Appointed Guardian or Conservator
All data are reported by the respondent based on their understanding of their family member's demographics, diagnoses and personal characteristics.
State
No Guardianship
Limited
Full
Has Guardianship but Level Is Unknown
N
PA
33%
13%
46%
9%
588
Weighted NCI Average
26%
25%
44%
4%
8649
Table 10. Guardian or Conservator Relationship to Family Member
All data are reported by the respondent based on their understanding of their family member's demographics, diagnoses and personal characteristics.
State
Family
Friend
Employee or Sate Guardianship Agency
Other
N
PA
91%
0%
6%
2%
376
Weighted NCI Average
86%
2%
9%
4%
5449
Table 11. Family Member's Highest level of Education
State
Did Not Complete High School (and Not Currently Enrolled)
Currently Enrolled in High School
High School Certification
High School Diploma or GED
Vocational School or Certificate Program
Some College
College Degree or Higher
N
PA
37%
0%
26%
28%
3%
1%
4%
603
Weighted NCI Average
33%
1%
32%
23%
3%
4%
5%
8722
Table 12. Family Member's Activities in the Past Two Weeks Included Paid Individual Job in the Community
An individual job is defined as work at an individual job in a local business alongside peers who do not have disabilities. Job is part of the typical labor market (for example, competitive employment).
State
Yes
No
N
PA
7%
93%
632
Weighted NCI Average
12%
88%
8713
Table 13. Family Member's Activities in the Past Two Weeks Included Paid Small Group Job in a Community-based Setting
A small group job is defined as work in an integrated setting, as part of a group of not more than 8 people with disabilities (for example, enclave, work crew).
State
Yes
No
N
PA
7%
93%
610
Weighted NCI Average
12%
88%
8467
Table 14. Family Member's Activities in the Past Two Weeks Included Paid Work in a Community Job That Primarily Hires People With Disabilities
Paid work in a community job that primarily hires people with disabilities is defined as work in a setting where the person interacts with the non-disabled population; this is not in a traditional sheltered workshop and NOT enclave.
State
Yes
No
N
PA
5%
95%
617
Weighted NCI Average
6%
94%
8567
Table 15. Family Member's Activities in the Past Two Weeks Included Unpaid Activity in the Community
Unpaid work in the community includes: volunteering, skills training, and staff-supported community connections.
State
Yes
No
N
PA
24%
76%
588
Weighted NCI Average
27%
73%
8247
Table 16. Family Member's Activities in the Past Two Weeks Included Paid Activity in a Facility-based Setting
Paid work performed in a facility-based setting is defined as work at a location developed specifically to provide work activity exclusively for people with disabilities; may be paid sub-minimum wage. Examples include traditional sheltered workshops or work activity centers.
State
Yes
No
N
PA
23%
77%
614
Weighted NCI Average
21%
79%
8538
Table 17. Family Member's Activities in the Past Two Weeks Included Unpaid Activity in a Facility-based Setting
An unpaid activity in a facility-based setting includes day habilitation, senior programs, or drop-in centers.
State
Yes
No
N
PA
31%
69%
586
Weighted NCI Average
33%
67%
8251
Table 18. Family Member's Activities in the Past Two Weeks Included School
State
Yes
No
N
PA
4%
96%
616
Weighted NCI Average
6%
94%
8627
Table 19. Family Member's Activities in the Past Two Weeks Included Stay at Home
State
Yes
No
N
PA
32%
68%
592
Weighted NCI Average
27%
73%
8376
Table 20. Family Member's Activities in the Past Two Weeks Included Other Activities
State
Yes
No
N
PA
51%
49%
237
Weighted NCI Average
42%
58%
2991
Table 21. Family Member's Support Needs for Self-Injurious, Disruptive, and/or Destructive Behaviors
All data are reported by the respondent based on their understanding of their family member's demographics, diagnoses and personal characteristics.
State
No Support Needed
Some Support Needed
Extensive Support Needed
N
PA
26%
38%
37%
655
Weighted NCI Average
33%
39%
28%
9135
Table 22. Family Member's Level of Help Needed with Personal Care Activities (for example, bathing, dressing, eating)
All data are reported by the respondent based on their understanding of their family member's demographics, diagnoses and personal characteristics.
State
No Support Needed
Some Support Needed
Extensive Support Needed
N
PA
15%
36%
49%
664
Weighted NCI Average
24%
37%
39%
9235
Table 23. Family Member's Need for Help with Other Daily Activities (for example, scheduling, managing money, or shopping)
All data are reported by the respondent based on their understanding of their family member's demographics, diagnoses and personal characteristics.
State
No Support Needed
Some Support Needed
Extensive Support Needed
N
PA
2%
13%
84%
661
Weighted NCI Average
3%
21%
76%
9229
Demographics - Respondents
Table 24. Language Usually Spoken at Home
State
English
Spanish
Other
N
PA
1%
0%
0%
667
Weighted NCI Average
97%
1%
1%
9284
Table 25. Respondent's Age
State
Under 35
35-54
55-74
75 or Older
N
PA
0%
9%
68%
23%
663
Weighted NCI Average
2%
13%
62%
24%
9270
Table 26. Respondent's Health
Responses to this question might have been impacted by the COVID-19 pandemic.
State
Excellent
Very Good
Fairly Good
Poor
N
PA
12%
48%
36%
4%
659
Weighted NCI Average
18%
46%
32%
5%
9280
Table 27. Respondent's Relationship to Family Member
State
Parent
Sibling
Spouse
Grandparent
Public Guardian
Private Guardian
Other
N
PA
60%
37%
0%
1%
0%
0%
2%
662
Weighted NCI Average
66%
19%
0%
1%
3%
3%
7%
9280
Table 28. Respondent's Frequency of Visits With Family Member Last Year
State
Did Not Visit
1 to 3 Times
4 to 6 Times
7 - 12 Times
More Than 12 Times
N
PA
6%
11%
12%
13%
59%
658
Weighted NCI Average
3%
9%
11%
12%
65%
9242
Table 29. 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
PA
2%
29%
9%
20%
40%
659
Weighted NCI Average
4%
17%
7%
23%
50%
9218
Table 30. Total Taxable Household Income of Wage Earners in the Past Year
State
Up to $15,000
$15,001 to $25,000
$25,001 to $50,000
$50,001 to $75,000
Over $75,000
No Earned Income
Prefer Not to Say
N
PA
8%
11%
16%
9%
16%
11%
27%
613
Weighted NCI Average
6%
7%
16%
13%
21%
9%
28%
8234
Demographics - Services and Supports Received
Table 31. 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
In-Home Support
Residential Supports
Day or Employment Supports
Transportation
Other
Self-Direction or Fiscal Intermediary Services
PA
25%
42%
96%
62%
95%
74%
17%
Weighted NCI Average
32%
45%
88%
69%
86%
54%
26%
Table 32. Additional Services and Supports Received (not from the 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
Social Security Payments (SSI or SSB)
Services or Supports from Other Agencies or Organizations
PA
96%
32%
Weighted NCI Average
95%
29%
Information and Planning
Information and Planning Tables
Table Q1. Do you get enough information to take part in planning services for your family member?
State
Always
Usually
Sometimes
Seldom or Never
N
PA
41%
39%
15%
6%
609
Weighted NCI Average
42%
38%
13%
7%
8360
Table Q2. Is the information you get about services and supports easy to understand?
State
Always
Usually
Sometimees
Seldom or Never
N
PA
42%
45%
11%
2%
626
Weighted NCI Average
42%
46%
10%
2%
8377
Table Q3. Do staff or the residential agency keep you informed about how your family member is doing?
State
Always
Usually
Sometimees
Seldom or Never
N
PA
47%
32%
16%
6%
658
Weighted NCI Average
50%
29%
14%
8%
8702
Table Q4. Does the case manager respect your family's choices and opinions?
State
Always
Usually
Sometimees
Seldom or Never
N
PA
62%
31%
5%
3%
634
Weighted NCI Average
65%
28%
5%
3%
8557
Table Q5. Do you need help planning for your family member'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
PA
19%
23%
30%
20%
40%
26%
1%
31%
21%
Weighted NCI Average
30%
35%
42%
28%
44%
33%
5%
36%
18%
Table Q6. In the past year, did your family member move out of the family home for the first time?
State
Yes
No
N
PA
2%
98%
639
Weighted NCI Average
4%
96%
9056
Table Q7. If your family member moved out of the family home for the first time in the past year, did your family member receive enough information about services available to support him or her?
PA'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
PA
n/a
n/a
n/a
Weighted NCI Average
86%
14%
282
Table Q8. If your family member moved out of the family home for the first time in the past year, did you have enough choices of service providers to support your family member living outside the family home?
PA'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
PA
n/a
n/a
n/a
Weighted NCI Average
68%
32%
293
Table Q9. Does your family member have a service plan?
State
Yes
No
N
PA ▲
98%
2%
568
Weighted NCI Average
92%
8%
7664
Table Q10. Does the plan include all the services and supports your family member needs?
State
Yes
No
N
PA ▲
96%
4%
515
Weighted NCI Average
93%
7%
6218
Table Q11. Does your family member get all the services listed in the plan?
State
Yes
No
N
PA
94%
6%
479
Weighted NCI Average
93%
7%
5869
Table Q12. Did you or someone else in your family (besides your family member with a disability) help make the plan?
State
Yes
No
N
PA ▼
70%
30%
527
Weighted NCI Average
80%
20%
6540
Table Q13. Did your family member help make the plan?
State
Yes
No
N
PA ▼
49%
51%
510
Weighted NCI Average
60%
40%
6369
Table Q14. Did you discuss how to handle emergencies (such as a medical emergency or natural disaster) at your family member's last service planning meeting?
Responses to this question might have been impacted by the COVID-19 pandemic.
State
Yes
No
N
PA
62%
38%
450
Weighted NCI Average
67%
33%
5721
Table Q15. If your family member left school services during the past year, did he or she have a transition plan?
PA's data are not included in the table due to low N (<20), but their responses are included in the NCI Average. Responses to this question might have been impacted by the COVID-19 pandemic.
State
Yes
No
N
PA
n/a
n/a
n/a
Weighted NCI Average
29%
71%
352
Table Q16. If your family had a transition plan, did the transition plan include getting or continuing work in a community job?
PA'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
PA
n/a
n/a
n/a
Weighted NCI Average
53%
47%
91
Table Q17. Does your family member have enough supports (for example, support workers, community resources) to work or volunteer in the community?
Responses to this question might have been impacted by the COVID-19 pandemic.
State
Yes
No
N
PA
77%
23%
387
Weighted NCI Average
72%
28%
5902
Table Q18. Do you feel prepared to handle the needs of your family member in an emergency such as a medical emergency or natural disaster?
Responses to this question might have been impacted by the COVID-19 pandemic.
State
Yes
No
N
PA ▼
69%
31%
514
Weighted NCI Average
76%
24%
7685
Access and Delivery of Services and Supports
Access and Delivery of Services and Supports Tables
Table Q19. Are you or your family member able to contact his or her support workers when you want?
State
Always
Usually
Sometimes
Seldom or Never
N
PA
60%
34%
5%
2%
643
Weighted NCI Average
59%
33%
6%
2%
8505
Table Q20. Are you or your family member able to contact his or her case manager when you want?
State
Always
Usually
Sometimes
Seldom or Never
N
PA
60%
33%
5%
3%
639
Weighted NCI Average
59%
31%
6%
3%
8635
Table Q21. 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
PA
54%
39%
6%
1%
363
Weighted NCI Average
54%
39%
5%
1%
5830
Table Q22. 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
PA
41%
45%
10%
4%
412
Weighted NCI Average
41%
43%
11%
5%
5836
Table Q23. Do support workers speak to you in a way you understand?
State
Always
Usually
Sometimes
Seldom or Never
N
PA
70%
27%
3%
0%
611
Weighted NCI Average
72%
24%
3%
1%
8201
Table Q24. Are services delivered in a way that is respectful of your family's culture?
State
Always
Usually
Sometimes
Seldom or Never
N
PA
74%
22%
3%
0%
605
Weighted NCI Average
77%
20%
2%
1%
8336
Table Q25. 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?
Responses to this question might have been impacted by the COVID-19 pandemic.
State
Always
Usually
Sometimes
Seldom or Never
N
PA
48%
37%
14%
1%
210
Weighted NCI Average
41%
41%
14%
4%
1745
Table Q26. 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
PA
42%
43%
13%
2%
574
Weighted NCI Average
44%
45%
9%
2%
7740
Table Q27. Does your family member 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
PA
65%
29%
4%
2%
387
Weighted NCI Average
60%
31%
5%
3%
4242
Table Q28. Can your family member see health professionals when needed? (For example, doctor, dentist, psychologist)
Responses to this question might have been impacted by the COVID-19 pandemic.
State
Always
Usually
Sometimes
Seldom or Never
N
PA ▲
78%
20%
1%
0%
646
Weighted NCI Average
74%
23%
3%
1%
8940
Table Q29. Does your family member's primary care doctor understand your family member's needs related to his or her disability?
State
Always
Usually
Sometimes
Seldom or Never
N
PA
67%
30%
3%
0%
559
Weighted NCI Average
62%
32%
5%
1%
7899
Table Q30. Can your family member go to the dentist when needed?
State
Always
Usually
Sometimes
Seldom or Never
N
PA ▲
77%
19%
3%
1%
624
Weighted NCI Average
67%
25%
5%
3%
8638
Table Q31. Does your family member's dentist understand your family member's needs related to his or her disability?
State
Always
Usually
Sometimes
Seldom or Never
N
PA ▲
70%
26%
3%
1%
515
Weighted NCI Average
64%
29%
4%
2%
7270
Table Q32. If your family member takes medications, do you know what they're for?
State
Always
Usually
Sometimes
Seldom or Never
N
PA ▼
66%
27%
6%
1%
606
Weighted NCI Average
72%
22%
5%
1%
8098
Table Q33. 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)?
State
Always
Usually
Sometimes
Seldom or Never
N
PA
71%
21%
4%
4%
547
Weighted NCI Average
75%
19%
3%
3%
7590
Table Q34. 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?
State
Always
Usually
Sometimes
Seldom or Never
N
PA
58%
33%
7%
2%
416
Weighted NCI Average
58%
33%
7%
3%
4592
Table Q35. Does your family get the supports and services it needs?
State
Yes
No
N
PA ▲
94%
6%
569
Weighted NCI Average
90%
10%
7754
Table Q36. 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
Regularly Scheduled Support for Family Member
Homemaker Services
Home or Vehicle Modifications
Counseling
Family-to-Famiy Networks
Other
PA
9%
18%
14%
32%
18%
55%
Weighted NCI Average
28%
16%
7%
26%
14%
59%
Choice, Decision Making and Control
Choice, Decision Making and Control Tables
Table Q37. Does the agency providing residential services to your family member involve him or her in important decisions?
State
Always
Usually
Sometimes
Seldom or Never
N
PA ▼
41%
36%
13%
10%
521
Weighted NCI Average
48%
32%
12%
8%
6937
Table Q38. Can your family choose or change the agency that provides your family member's services?
Responses to this question might have been impacted by the COVID-19 pandemic.
State
Always
Usually
Sometimes
Seldom or Never
N
PA
60%
21%
7%
12%
329
Weighted NCI Average
63%
21%
6%
11%
5145
Table Q39. Can your family choose or change the individual staff that provide the services for your family member?
Responses to this question might have been impacted by the COVID-19 pandemic.
State
Always
Usually
Sometimes
Seldom or Never
N
PA ▼
22%
16%
18%
45%
341
Weighted NCI Average
32%
21%
14%
33%
5303
Table Q40. Does your family directly manage support staff?
State
Always
Usually
Sometimes
Seldom or Never
N
PA ▼
2%
2%
2%
94%
544
Weighted NCI Average
8%
6%
6%
80%
6109
Table Q41. Do service providers for your family member work together to provide support?
Responses to this question might have been impacted by the COVID-19 pandemic.
State
Yes
No
N
PA ▲
96%
4%
449
Weighted NCI Average
93%
7%
6225
Table Q42. Did you, your family member, or someone else in your family choose your family member'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
PA ▼
14%
54%
32%
501
Weighted NCI Average
21%
55%
24%
7198
Involvement in the Community
Involvement in the Community Tables
Table Q43. Does your family member take part in activities in the community?
Responses to this question might have been impacted by the COVID-19 pandemic.
State
Yes
No
N
PA
92%
8%
637
Weighted NCI Average
89%
11%
8618
Table Q44. For your family member, what makes it hard to take part in activities in the community?
Categories are not mutually exclusive, therefore N is not shown. Responses to this question might have been impacted by the COVID-19 pandemic.
State
Lack of Transportation
Cost
Lack of Support Staff
Stigma
Other
PA
8%
7%
17%
7%
29%
Weighted NCI Average
15%
16%
22%
8%
24%
Table Q45. Does your family member have friends other than paid support workers or family?
State
Yes
No
N
PA
61%
39%
582
Weighted NCI Average
66%
34%
8189
Table Q46. In your community, are there resources that your family can use that are not provided by the IDD agency?
Responses to this question might have been impacted by the COVID-19 pandemic.
State
Yes
No
N
PA
79%
21%
356
Weighted NCI Average
82%
18%
5925
Table Q47. 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
PA
12%
88%
532
Weighted NCI Average
14%
86%
7680
Satisfaction With Services and Supports
Satisfaction With Services and Supports Tables
Table Q48. Overall, are you satisfied with the services and supports your family member currently receives?
Responses to this question might have been impacted by the COVID-19 pandemic.
State
Always
Usually
Sometimes
Seldom or Never
N
PA
44%
46%
9%
1%
646
Weighted NCI Average
43%
46%
9%
2%
8994
Table Q49. 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
PA
68%
32%
657
Weighted NCI Average
69%
31%
9106
Table Q50. 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
N
PA
62%
38%
102
Weighted NCI Average
67%
33%
1027
Table Q51. Do you know how to report abuse or neglect related to your family member?
Don't Know responses were included in "No" responses for this question.
State
Yes
No or Don't Know
N
PA ▼
75%
25%
656
Weighted NCI Average
80%
20%
9130
Table Q52. Within the past year, was a report of abuse or neglect filed on behalf of your family member?
State
Yes
No
N
PA ▲
11%
89%
615
Weighted NCI Average
6%
94%
8724
Table Q53. If a report of abuse or neglect was filed within the past year, did the appropriate people respond to the report?
State
Yes
No
N
PA
83%
17%
48
Weighted NCI Average
84%
16%
365
Table Q54. If someone outside of your family reported abuse or neglect within the past year, were you notified of the report in a timely manner?
State
Yes
No
N
PA
83%
17%
48
Weighted NCI Average
76%
24%
337
Table Q55. Do you feel that services and supports have made a positive difference in the life of your family member?
State
Yes
No
N
PA
95%
5%
620
Weighted NCI Average
96%
4%
8500
Table Q56. Have the services or supports that your family member 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
PA
9%
91%
572
Weighted NCI Average
11%
89%
7891
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?
Responses to this question might have been impacted by the COVID-19 pandemic.
State
Yes
No
N
PA
64%
36%
42
Weighted NCI Average
80%
20%
758
Table Q58. Have the services or supports that your family member received been increased in the past year?
Responses to this question might have been impacted by the COVID-19 pandemic.
State
Yes
No
N
PA
21%
79%
433
Weighted NCI Average
19%
81%
6631
Table Q59. Are services and supports helping your family member to live a good life?
Responses to this question might have been impacted by the COVID-19 pandemic.