Stuart Gilkisonⁱ

The Wisconsin Living with Independence, Freedom and Equality (LIFE) Account feasibility study's goal is to determine whether Medicaid eligible individuals who self-direct their long-term care services are interested in a personal savings account program. LIFE Accounts were proposed by the federal government in an effort to remove barriers to independence, community living, and participation in the labor force for Medicaid-eligible individuals with disabilities by giving them the opportunity to build savings for purchases that will increase their independence and productivity while also maintaining their vital health coverage and standard of living.

CMS defines self-directed programs as those which "present individuals with an option to control and direct Medicaid funds identified in an individual budget, and in which the participants live in their own homes." In addition, principles of self-direction in Medicaid programs are represented by the following components:

1. Person-centered Planning
2. Individual Budgeting
3. Self-directed Support
4. Quality Assurance and Improvement

Not all of the components of self-direction as defined by CMS are available in all Wisconsin Medicaid Waiver programs. Family Care requires each CMO under contract to have an approved "self-directed supports" plan which encompasses the four CMS self-direction components. Individuals enrolled in Medicaid Waiver programs in Wisconsin have the option of self-direction, though not every enrollee chooses this option. Because the term "self-direction" has different meanings to different populations, simply asking people if they self-directed their services would provide potentially helpful but limited information regarding the breadth and depth of self-directed services. Having already established components of self-direction, a sample from the State of Wisconsin Medicaid Waiver population was chosen as the target population to survey and gauge interest in LIFE Accounts. A method was devised to identify and quantify the degree of self-direction within the context of a paper survey.

A proxy definition of self-direction was developed by asking three questions based on the CMS definition. Participants were asked:

1. If they are responsible for choosing the types of services they receive from Medicaid
2. If they are responsible for choosing how to spend the money they are authorized from Medicaid
3. If they are responsible for hiring and firing their personal care worker(s)

Surveys were sent to a sample of 5,913 Medicaid waiver recipients who were eligible as of May 2005 for the Brain Injury Waiver (BIW), Community Integration Program (CIP 1A, CIP 1B and CIP II), Community Options Program (COP-W), PACE/Wisconsin Partnership Program (WPP), and Family Care (FC). A survey was sent to a total of 3,657 individuals who where identified as self-directing their services. All PACE/WPP recipients were surveyed and none of them were indicated as self-directing in HSRS LTS. One-fifth of the FC recipients surveyed were from Milwaukee County. A total of 1,523 recipients returned their surveys by the deadline, which resulted in a response rate of 26%.

The goals of the survey were to identify:

1. The number of Medicaid waiver recipients who were eligible to self-direct their long-term support services.
2. The number of Medicaid waiver recipients who are currently self-directing their long-term support services.
3. The number of Medicaid waiver recipients who are interested in self-directing their long-term support services.
4. The number of recipients interested in establishing a LIFE Account.

The results were analyzed along the following strata: the presence or absence of self-direction, whether assistance was received in completing the survey; age; gender; and waiver group. Age and gender tables that did not indicate a significant difference were not included. In reporting data according to these common categories it is possible to identify trends and response patterns which may assist with quality improvement activities while guiding future outreach and research efforts.

The 1,523 respondents ranged in age from 5 to 100 years of age, with an average age of 52.9 years. On average, female respondents were 57 years of age and male respondents were 47 years of age. Females comprised 54.7% of respondents (N = 833) and males 45.3% (N = 690). A majority of the respondents (58.1%, N = 885) self-directed their services. Nearly three-quarters (73.3%, n = 911) of respondents indicated they received assistance in completing the survey.

In analyzing survey responses, several themes emerged. Summaries of these themes are listed below:

Interest in LIFE Accounts

• Nearly two-thirds (62.3%) of survey respondents expressed an interest in establishing a LIFE Account if they become available.
• Interest in LIFE Accounts is expressed to a greater extent among respondents who were able to complete the survey without assistance.
• Tables are for descriptive purposes only. Age, gender, and waiver are closely linked (e.g., BIW enrollees are likely to be young males) and so tables grouping responses by only one of these variables should be interpreted with caution.

Link between interest and self-direction

• A majority of respondents (76%) who answered Question 11 ("If you would not be interested in having a LIFE Account, why not?") completed the survey with assistance. This question was to be completed only by those who expressed no interest in LIFE Accounts in the question prior, strengthening the link between interest in LIFE Accounts and ability to self-direct.

Barriers and limitations

• Asset limits and lack of extra money are the two most significant barriers to saving, comprising 80% of closed-ended responses and 46% of open-ended responses. The fact that these specific barriers to saving are reiterated in the open-ended portion of this question emphasizes their impact on saving.

Saving and spending

• The most popular options for saving were to deposit money from monthly benefit checks and a portion of the money remaining from their Medicaid budget.
• The most common items that people would like to save for include a vacation, home modifications, devices to improve communication, and a home.
• A large number of open-ended responses were categorized as "Other," indicating a high level of diversity among the types of responses provided.

The information gathered above within the survey will be utilized to propose to the Department of Health and Family Services the implementation of a LIFE Account savings program in Wisconsin.

iStuart Gilkison is a Policy Analyst with Pathways to Independence Projects. He holds a Masters degree in Rehabilitation Psychology for the University of Wisconsin-Madison. He has 15 years experience working with individuals with disabilities in the areas of housing, employment and independent living.