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

Introduction

Research indicates that individuals with intellectual and developmental disabilities (IDD) experience significantly lower levels of self-determination (SD) than their typically developing peers as well as those with other disabilities (Stancliffe et al., 2000a,b). Existing studies show a correlation between self-determination and post-school outcomes of students with IDD, suggesting that supporting the development of those capacities know to enhance self-determination has the potential to promote independence and a higher quality of life in the future. Self-determination, as defined within the tripartite ecological model, is a psychological construct within the organizing structure of theories of human agentic behavior (Wehmeyer & Abery, 2013) of SD, the ultimate goal of which is to achieve the levels of personal control over life that individuals’ desire within those areas they perceive as important (Abery & Stancliffe, 2003). It is widely accepted that SD promotes independence and choice-making (Abery et al., 2019; Abery & Stancliffe, 2003). Studies indicate a strong correlation between SD and positive post-school outcomes (Wehmeyer & Palmer, 2003). Enhancing SD is a research-based practice that has been utilized in transition programs to positively impact not only the exercise of personal control in school and community but post-school employment and independent living outcomes (Shogren et al., 2018).

            Self-determination is best measured using person-centered assessments, e.g. those developed using the tripartite ecological model approach by Abery and colleagues at the University of Minnesota’s Institute on Community Integration (Minnesota Self-Determination Scales; Self-Determination and Control Opportunity and Response Evaluation System-SDCORES; Abery et al., 2011, 2014). Collecting data from participants with disabilities themselves or via observations in cases when a person is not able to respond is not always possible due to cost or time constraints. In the absence of data from these assessment tools, there are several indicators that can be used as proxies to measuring self-determination, including participation in self-directed services, being one’s own guardian, and exercising choice-making, that can be found in existing datasets, e.g. National Core Indicators (NCI; Stancliffe et al., 2000b; Houseworth et al., 2018).

National Core Indicators

The National Core Indicators (NCI) outcomes measurement program provides a national and state picture of the lives of adults with IDD in the US.  The National Core Indicators In-Person Survey (NCI-IPS) was developed by the National Association of State Directors of Developmental Disabilities Services (NASDDDS) and the Human Services Research Institute (HSRI) (Bradley & Moseley, 2007). The NCI-IPS is used to collect data on service users with IDD on an annual or bi-annual basis. For each data collection period, participating states sample at random or in a stratified random fashion a minimum of 400 adults with IDD. The survey includes three main sections. The Background Information Section includes questions related personal demographics, disability diagnoses, health, mobility, communication, residence type and size, employment, and behavioral supports. These items are typically completed by agency staff or case managers/service coordinators based on agency records but may also be completed by the individual or family members. Section I includes questions on employment/daily activity, home, friends and family, safety, and satisfaction with supports/services. Section I items can only be answered by the individual receiving services in a face to face in an interview format; proxy responses are not accepted. No questions from this section were used in this study. Section II of the NCI-IPS includes items related to community inclusion, choices, rights, and access to needed services. These items can be answered by the individual or a proxy (e.g., family or staff member), and the source of the information (i.e., self or proxy) is recorded individually for each Section II item. Section II is also administered by a face-to-face interview with the respondent. The NCI-IPS interview is standardized, but the agency responsible for data collection can vary from state to state. Some states contract with private organizations, some with universities, while in other states employees from the departments of human services assume this responsibility. All interviewers undergo detailed NCI data collection training provided by HSRI.

Self-Directed Services

Self-directed services funded by Medicaid are designed for people with disabilities, or their representatives if applicable, to have decision-making authority over their support services and take responsibility to manage these services with the assistance of their system of supports. The self-directed service delivery model is an alternative to more traditional agency delivery models. Self-direction of services provides people with disabilities with the opportunity and responsibility to manage their services in their communities and in a person-centered manner. Self-direction has the potential to promote personal choice and control over the delivery of waiver and state plan services, including who provides the services and how services are provided. Participants are afforded the decision-making authority to recruit, hire, train, and supervise the individuals who provide their services ("employer authority"). Participants may also have decision-making authority over how their allocated Medicaid funds are spent ("budget authority"; Centers for Medicare & Medicaid Services, CMS).

There are several options under the state plan and waivers for providing participants with the option to self-direct Medicaid services:

• Home and Community-Based Services State Plan Option- 1915(i)
• Community First Choice-1915(k)
• Self-Directed Personal Assistance Services State Plan Option-1915(j)
• Home and Community-Based Services Waiver Programs- 1915(c)

Even though each state administers self-directed services with some variations, CMS has identified several common components across states:

• Person-centered planning process
• Service plan
• Individualized budget
• Information and assistance in support of self-direction (Centers for Medicare & Medicaid Services, CMS)

Participation in self-directed services has increased in recent years, partly in alignment with the Home and Community-Based Services (HCBS) Final Settings Rule and with the need for person-centered services to support individual choice and control (HSRI, 2019) and self-determination of people with disabilities in general. That said, the self-directed funding option is used unevenly between and within states.

Wisconsin has reported one of the highest percentages of HCBS service users with IDD (36%) who are on self-directed support waivers as measured by the NCI-IPS, compared to a weighted national average at 12% (NCI, 2018-19). Regionally, Minnesota has reported one of the lowest participation of people with IDD in self-directed services at 7%, while Michigan is slightly above average at 16%. Illinois did not participate in the 2018/19 NCI data collection, but the 2017/18 data indicated high participation in self-directed funding at 32% (NCI, 2017-18a). It is important to note that there are variations in sampling frames across states in NCI, with some states (i.e., Wisconsin oversampling people who are on self-directed waivers (Cherry et al., 2020; NCI, 2017-18b).

Participant choice-making and self-determination have been core concepts of Family Care since Wisconsin’s managed long-term services and supports (LTSS) program was initially proposed in the late 1990s. When the required waivers to operate the Family Care program in Wisconsin came up for renewal in 2007, CMS insisted, as a condition of waiver renewal, that the state establishes a separate HCBS waiver program for qualified adults to be able to elect to self-direct their services and supports (NCD, n.d.).

In Wisconsin, self-directed supports for adults with disabilities and aging needs eligible for Medicaid are administered via a program called IRIS (Include, Respect, I Self-Direct). Based on the Wisconsin Department of Health Services website, “IRIS is built on the principles of self-determination and self-direction.” The program emphasizes that along with the freedom to make choices and decisions about how to live one’s life, the participants need to take responsibility for managing their budget, with needed supports. According to the Wisconsin Department of Health Services, self-directed supports are a “facet of the larger self-determination philosophy” (WIDHS, 2017). The Wisconsin Department of Health Services (WIDHS) has an IRIS Consultant Agency to assist participants in selecting a qualified individual (consultant) to help them develop and manage a person-centered plan under the waiver. The WIDHS also contracts with a Financial Service Agency to pay the bills and handle other background functions for IRIS participants (NCD, n.d).

Guardianship

Based on previous research on outcomes for people with IDD (Stancliffe et al., 2000; Millar, 2007; National Core Indicators, 2016), there is a trend for adults with IDD who have an appointed legal guardian to exercise fewer rights compared to people who do not have a guardian. Many U.S. adults with IDD have legal guardians, usually, their parents, which abridges the adult’s legal rights confers the guardians with decision-making power across a host of legally binding situations. NCI data indicates that an average of 42% of adult participants were under legal guardianship (National Core Indicators, 2016). This rate varies across U.S. states, likely related to state guardianship policy and processes.

Stancliffe et al. (2000b) found that controlling for adaptive behavior and intellectual functioning, adults with IDD with an appointed guardian (conservator) exerted less personal control than those without. This study also showed that a number of relatively more competent individuals were subject to guardianship despite displaying self-determination competencies similar to individuals who did not have a guardian. 

Based on previous research examining the impact of having a guardian on outcomes for people with IDD (e.g., employment - Houseworth et al., 2019), we hypothesize that the presence of a guardian may lead to exerting more control over the individual with a disability and their choices of services. Self-directed waivers can be complicated to manage, and the consequences of mismanagement can be returning to waitlists for services in some states. It may therefore be the motivation for the management of self-directed waivers of individuals with IDD by guardians, risking not reflecting the “self” intention of self-directed waivers.  This hypothesis is also supported by Cherry et al. (2020) who found that people using self-directed funding were most likely to live with their parents or other relatives.  In addition, people with IDD who were non-verbal or had an autism diagnosis were more likely to be on self-directed funding than those who did not have these characteristics. The findings by Cherry et al. (2020) point to a potentially important connection between self-directed funding and guardian/parent involvement, especially for people with more significant support needs, leading to a different interpretation of “self” in self-directed funding.

The variable of guardianship is a single item in the NCI-IPS asking if a person has full, partial, or no guardianship/conservator status. For analysis purposes, we combined partial and full guardianship into a single “guardianship” factor.

Choice

Choice-making is an important component of self-determination (Wehmeyer & Abery, 2013). There are many different choices we all make throughout the day and longer time periods. In the National Core Indicators In-Person Survey (NCI-IPS), choice-making of persons with IDD has been measured using two choice scales, every day and support-related choice. The support-related and everyday choice scales were originally created by Lakin et al. (2008) based on an initial factor analysis using NCI data and further examined by Tichá et al. (2012) and Houseworth et al. (2018). In another NCI-based analysis, Bush and Tassé (2017) found a similar breakdown with the same choice items clustering, calling the two factors long-term and short-term choice making. A near-identical factor structure has been found with adults with IDD by researchers in Ireland (O’Donovan et al., 2017). This study also found two factors, everyday decisions and what the researchers named “key life” decisions, by using questions similar to, but distinct from, the NCI-IPS survey questions on choice. Service users with IDD are more likely to make everyday choices than support-related choices (Lakin et al., 2008; Sheppard-Jones et al., 2005). This difference is likely due to constraints on support-related choices because of funding, regulations, and control by service providers, as well as the actions of caregivers. Issues of where and with whom to live are often controlled by service providers, regulations, and funding, especially in congregate settings like group homes where residents exercise little choice over such matters (Stancliffe et al., 2011).

The two scales of support-related and everyday choice are important to consider in relation to self-directed waivers and self-determination in general. If choice levels are similar across those using and not using self-directed waivers or lower for those on self-directed waivers, such trends would suggest the intention of these waivers to increase self-determination of people with IDD is not manifesting in reality.