National Core Indicators Adult Family Survey Results Josh Engler, Human Services Research Institute July 13, 2012

What is NCI? NCI is a voluntary effort by public developmental disabilities agencies to measure and track their own performance. Collaboration began in 1997 Currently 35 states represented plus 23 sub-state entities Coordinated by HSRI and NASDDDS

What is an “Indicator”? Indicators are standard measures used across states to assess the outcomes of services provided to individuals and families. Indicators address key areas of concern including employment, rights, service planning, community inclusion, choice, and health and safety.

NCI Performance Assessment Personal Outcomes Employment Community Participation Choice & Decision making Relationships Family Outcomes Information & Planning Access & Service Delivery Choice and Control Community Connections Satisfaction Outcomes Health, Welfare, System Health and Welfare Respect & Rights Medications Safety Service Coordination Staff Stability

NCI Participating States States States States

What are the data sources? Adult Consumer Survey Family Survey  Adult Family Survey (at home, 18+)  Family Guardian Survey (out-of-home)  Children Family Survey (at home, <18) System Indicators

Family Survey Design Administered by mail Includes demographics, six outcome areas Combination of 5-point scale and yes/no response options, open-ended comments 79 questions on AFS, 53 on FGS, and 67 on the CFS – will be shorter in next round! 8

Adult Family Survey Selected Results

Sample and Analysis 9 states mailed 13,270 surveys States- Florida, Georgia, Louisiana, North Carolina, New Jersey, New Mexico, Ohio, Oklahoma, and Pennsylvania 3,884 returned; 3,654 valid surveys Response rate 29% (valid 28%) State averages are statistically tested against national average 10 NCI Adult Family Survey Results

Respondent Demographics 11 NCI Family Survey Results % over age 55

Number of Adults Living at Home 12 Florida NCI Family Survey Results

Out-of-Pocket Expenses 13 Florida NCI Family Survey Results

14 NCI Family Survey Results Household Income 46% below $25,000

Information and Planning 15 Florida NCI Family Survey Results

Information and Planning 16 Florida NCI Family Survey Results

Information and Planning 17 NCI Adult Family Survey Results Does your family member’s case manager/service coordinator tell you about public services that you are eligible for (e.g., food stamps, Supplemental Security Income [SSI], housing subsidies, etc.)? StateAlwaysUsuallySometimesSeldomNeverN NCI Average36%25%14%10%16%3,358 Range of ‘always’ responses, by state. 15% - 47%

Information and Planning 18 NCI Adult Family Survey Results “Our case manager makes sure our family's opinions and decisions are important and taken into consideration when planning.” “ (We need) better knowledge of available resources. If you don't know what to (or how to) ask, you don't find out information.”

Access and Service Delivery 19 Please edit the Footer and replace with presentation title

Access and Service Delivery 20 Please edit the Footer and replace with presentation title

Access and Service Delivery 21 NCI Adult Family Survey Results Do you feel that your family member’s day/employment setting is a healthy and safe environment? StateAlwaysUsuallySometimesSeldomNeverN NCI Average66%27%5%1% 2,797 Range of ‘always’ responses, by state. 53% - 77%

Access and Service Delivery 22 NCI Adult Family Survey Results “We like our case worker, and all the people where our daughter gets "vocational training." We are happy with our in-home waiver and our case worker.” “Dental - many dentists not equipped/trained to work with special needs. I am paying out of pocket for quality dental care by a dentist and X-rays and cleaning 3-4 times a year.”

Choice and Control 23 Please edit the Footer and replace with presentation title

Choice and Control 24 Please edit the Footer and replace with presentation title

Choice and Control 25 NCI Adult Family Survey Results “We do have "freedom of choice" to choose a case management provider, but do not have control over the hiring. We can express grievances with provider if necessary.” “We have the right to accept compatible workers or not to accept workers that are not compatible.” “[I am satisfied with] having control over the hiring of support workers” “I am always informed about how the money is spent.”

Community Connections 26 Please edit the Footer and replace with presentation title

Community Connections 27 NCI Adult Family Survey Results “Volunteer activities have increased his self-esteem and sense of belonging in the community.” “We definitely need more resources for persons who have a more complex array of disabilities, not only for those whose disabilities are milder, more interaction with non disabled peers, one on one.”

Satisfaction 28 Please edit the Footer and replace with presentation title

Satisfaction 29 NCI Adult Family Survey Results Overall, are you satisfied with the services and supports your family and family member currently receive? StateAlwaysUsuallySometimesSeldomNeverN NCI Average40%43%12%2% 3,451 Range of ‘always’ responses, by state. 22% - 51%

Outcomes 30 Please edit the Footer and replace with presentation title

Outcomes 31 NCI Adult Family Survey Results Have the services or supports that you or your family member has received during the past year been either reduced, suspended, or terminated? StateYesNoN NCI Average31%69%3,156 *Higher score is negative Range of ‘yes’ responses, by state. 13% - 46%

Outcomes 32 NCI Adult Family Survey Results “I am so grateful for the DD Waiver - it keeps my family member safe, busy and gives [individual in services] a meaningful life” “Sometimes the goals are vague and it's hard to tell if they are being met. I think when you are dealing with our son, the main thing is for him to be happy and content. This is difficult to put down as a goal.”

For More information 33