Indicators of Self-Determination in Wisconsin using National Core Indicators Data
Results and Discussion
Participation in self-directed waiver programs nationally, regionally, and in Wisconsin
According to the 2017/18 NCI-IPS data analyzed for this report, 47% of participants sampled from Wisconsin reported being on a self-directed waiver (see note 1) compared to 18% regionally (MN, MI, and IL), and 8% in the remainder of the participating states. As indicated in the introduction to this report, the sampling frame for NCI in Wisconsin is skewed toward sampling people who use the IRIS self-directed waiver program, and thus the results need to be interpreted in that context.
Nationwide, self-directed funding participation is largely being driven by those under the age of 40. In Wisconsin, this is particularly evident by those on self-directed funding under the age of 21 at 82% and those between ages 22 and 40 at 62%, compared to 47% overall. This trend is evident also at the regional and national levels.
In Wisconsin, the majority of people on self-directed waivers were individuals with mild or no levels of ID at 49%, followed by those with moderate (36%), severe (18%), and profound levels (17%). A similar trend was identified at the regional and national levels, with a smaller difference between levels of ID. This finding differs from previous analysis of NCI data from 2012/13 at a national level indicating people with more significant levels of ID as being better represented in self-directed funding programs than those with mild or no ID (Cherry et al., 2020).
Associations with self-directed waiver participation
Controlling for level of ID, mobility limitations, sensory disabilities, mental health and behavioral management needs, non-verbal expression, and gender, we explored whether residential setting, age, and guardianship status are associated with self-directed waiver participation via logistic regression. Using all participating states in NCI, residential settings other than living with family were all associated with less participation in self-directed waivers. Age was associated with participation in self-directed funding programs in that those under the age of 21 were more likely than all other age groups to participate confirming descriptive findings. Finally, having a guardian was also positively associated with more participation. In Wisconsin, 52% of people with IDD were reported as having a guardian, which was less compared to the region (76%), but more than the rest of the US (41%). Results solely for the state of Wisconsin and the region regarding an association between residential setting, age and guardianship, and self-directed funding services were the same.
The relationship between having a guardian and self-directed waiver participation is interesting and perhaps an important finding for stakeholders. People with IDD who have guardians are more likely to be on self-directed waivers, which suggests self-directed waiver funding may be controlled by guardians. The fact that guardians play a role in self-directed waiver participation is not in and of itself necessarily a problem: this arrangement could be both ideal and preferred by an adult with IDD. However, in cases when the person with disability themselves could be involved in self-directing their services themselves with appropriate supports, guardianship can be a barrier to self-determination.
Similarly, the fact that living with family has been shown to be associated with more participation in self-directed waiver programs may suggest that the decision-making process may involve (in some cases heavily) family members (some of whom are likely guardians themselves or acting unofficially as one). This finding may indicate decreased opportunities for self-determination by people with IDD.
If self-directed funding options are to promote self-determination, there is little evidence this is true at the moment. In fact, while Wisconsin reports the largest proportion of people with IDD using self-directed funding option in NCI, this fact is not associated with more choice. One issue may be the already mentioned oversampling of people using the self-directed option in Wisconsin. In NCI-IPS choice-making is measured using Support-Related and Every-Day Choice scales. These scales have been originally created by Lakin et al. (2008) and verified by Tichá et al. (2012) and Houseworth et al. (2018). The Everyday Choice scale includes three items on choice of (a) daily schedule, how to spend free time; and (c) what to buy with spending money. The Support-Related Choice scale includes six items about choice of (a) who they live with; (b) where they live; (c) staff who helps at home; (d) work or day activity; (e) staff who helps at work; and (f) case manager/service coordinator.
Predictors of Choice-making
Controlling for level of ID, mobility limitations, sensory disabilities, mental health and behavioral management needs, non-verbal expression, and gender, we explored whether residential setting, age, guardianship, and self-direction are associated with support-related and everyday choice via linear regression.
Support-related choice. Using a national sample of participating states, living with family was associated with less support-related choice compared to living independently while living in a group home or institution was associated with less choice than living independently and with family.
Older age was associated with more support-related choice. Having a guardian was associated with less support-related choice. Being on self-directed funding was not associated with support-related choice nationwide and regionally.
In the state of Wisconsin, results were similar. However, only living independently was clearly associated with more choice than living with family. (see note 2) The remaining results did not demonstrate significant associations. Further, age was not significantly associated with support-related choice. Finally, self-direction was associated with more support-related choice in Wisconsin.
Everyday choice. For everyday choice, living with family was associated with less choice compared to living independently or in a small group home, while living in an institution was associated with less choice. Older age was associated with more everyday choice. Having a guardian was associated with less everyday choice. Self-direction was associated with less everyday choice nationally, but not regionally.
In the state of Wisconsin, results were similar. However, only living independently was associated with more choice than living with family. Further, in Wisconsin, age and self-direction waiver participation was not significantly associated with everyday choice.
Regional and national differences in self-direction, guardianship, and choice
In order to explore how different Wisconsin is to the region, including the states of Illinois, Michigan, and Minnesota, and nationally, we used analysis of variance (ANOVA). We used the same controls and variables explored in previous sections (e.g., level of intellectual disability, age) and added a variable that explored if there were statistically significant differences between Wisconsin, the local region, and the rest of the national state in terms of self-direction, guardianship, and choice.
Our results indicated that participation in self-directed funding was significantly higher in Wisconsin than in either the region or the other participating states. This finding can be partially attributed to the fact that the state oversamples individuals in the IRIS program for the purposes of the NCI data collection. Further, the region had significantly higher self-direction than the other participating states.
Significantly more people with IDD had a guardian in the region than either in Wisconsin or the other NCI participating states. Further, significantly more people with IDD in Wisconsin had a guardian than in the other participating states.
Support-related choice was comparable between the region and the other states. Support-related choice was significantly lower in Wisconsin than in either the region or the other states.
Further, everyday choice was significantly lower in Wisconsin than in other states.
1. Other reports may indicate different frequencies due to issues of weighting (particularly, national differences in sampling numbers vs. services users per state). We report raw numbers here. Further, while data on self-directed waivers participation is largely based on case manager reporting, it is presumable individuals filling out the survey data from which this report is derived are not fully accurate.
2. Small numbers of individuals living in large settings (group homes and especially institutional settings) in many regions and states may make it less likely to detect any differences between other groups in certain regions, states, and the U.S. overall.