Indicators of Self-Determination in Wisconsin using National Core Indicators Data

Conclusions and Recommendations

In Wisconsin, significant efforts have been dedicated to increasing self-determination of people with disabilities by developing and maintaining the IRIS (Include, Respect, I Self-Direct) self-directed funding service option. This is a very important effort, especially for people with intellectual and developmental disabilities (IDD), given the historical circumstances of institutionalization and lack of opportunities for self-determination. Additionally, research has indicated improved outcomes for people with IDD as a result of increased self-determination.

The purpose of this report was to provide an overview of different indicators of self-determination for people with IDD in the state of Wisconsin as well as a comparison with the region and other states participating in the National Core Indicators (NCI) data collection.

The findings reflect information about people with IDD receiving HCBS services who participate in the NCI-IPS. The findings can be summarized as follows: 

• Wisconsin has shown to have a significantly higher percentage of people with IDD on self-directed funding waivers than either the region (MN, MN and IL) or other participating states (please note an oversampling of people with IDD on self-directed funding in NCI data collection).
• Younger people with IDD were more likely to use self-directed funding nationwide, regionally, but even more so in Wisconsin, than older participants.
• People with IDD who were older were associated with making more support-related choices.
• Living with family was associated with more participation in self-directed waiver programs.
• Living with family was associated with making less choices than living independently.
• People with IDD who had guardians were more likely to be on self-directed waivers.
• Having a guardian was associated with less support-related and everyday choice for people with IDD.
• Support-related choice was significantly lower in Wisconsin than in either the region or the other states.
• Everyday choice was significantly lower for people with IDD Wisconsin in general than in other states.
• People with IDD on self-directed funding was associated with more support-related choice in Wisconsin, but not regionally and nationwide.

Even though Wisconsin has made a significant effort to enroll people with IDD in self-directed funding services option (IRIS program), there appear to be several barriers to choice making (everyday and support-related) and potentially self-determination. In general, people with IDD in Wisconsin tended make less support-related as well as everyday choices than in either the region or in other states. Even though significantly more younger people with IDD are reported as self-directing their services, it is in fact those who are older who tended to make more support-related choices. Even though people with IDD living with family are more likely to use the self-directed funding option, they are less likely to make their own choices. While the results indicated that significantly more people with IDD who have a guardian use the self-directed funding option (similarly to living with family) in Wisconsin, having a guardian was associated with people with IDD making less support-related and everyday choices.

Based on these conclusions, we recommend that in addition to enrolling people with IDD in the self-direct service program, it is critical to examine who is directing these services in reality.  While having family members and guardians assisting in this process may be necessary, a close attention needs to be paid to the degree to which the person with a disability is able to exercise self-determination in the process, i.e. to what extent they are involved in understanding their service options and what opportunities they have to make their own choices. There appears to be a need for education and training of young people with IDD about choice-making, self-determination, and participation in the self-directed funding program to be able to maximize its opportunities and benefits, e.g. during their transition programs. In addition, a training for family members and guardians may be warranted to better understand the importance of self-determination for people with IDD (especially those who are younger) and to know how best support them in directing their services, e.g. supported-decision making.