The Minnesota Department of Human Services (DHS) issued a 38-page report on the results of a participant experience survey for the waiver programs including the brain injury (BI), community alternative care (CAC), community alternatives for disabled individuals (CADI) and developmental disability (DD) waivers. The report is a result of legislation enacted in 2007 with the following criteria:

“1) Could be implemented annually,
2) Is independent and random,
3) Covers 5–10 % of recipients,
4) Can determine the effectiveness and quality of disability services,
5) Is consistent with expectations of the Centers for Medicaid and Medicare Services quality management requirements for evidence based reporting,
6) Assesses achievement of desired outcomes for those with varying demographic, diagnostic, health, and functional needs receiving different types of services, in different settings, with different costs.”

Funding for the survey was provided for only one year, so future implementation of the survey is unclear.

Here is some of the executive summary narrative:

Survey Results

Of the 977 interview appointments, 825 resulted in conducted interviews, for a completion rate of 84%. Of the 825 conducted interviews:

• 51% (422) were with participants of the Community Alternatives for Disabled Individuals (CADI) Waiver.
• 49% (403) were with non-CADI Waiver recipients.
• 3% (26) were conducted in Hmong, Somali or Spanish.
• 10% (87) were with minors under the age of 18.

The average age of survey respondents was 43 years, ranging from two to 78 years.

Of all conducted interviews, approximately:

• 90% of all respondents report that being supported has made their life better than before they were on the program.
• 94% of respondents stated that they are able to vote when they want to.
• However, almost a third (28%) of respondents with developmental disabilities stated that no, they are not allowed to vote, were unsure, or did not remember.

Adult respondents’ experience with case management and service plan development is generally positive. Over 90% of respondents report that they are overall satisfied with case management, that their case manager treats them with respect and that they are able to contact their case manager as needed. However, approximately one-third of respondents (34%) did not know that they could change case managers. Additionally, 47% (316 of 673) of respondents wanted to change services or supports in their service plan. Of the requests made, 15% (45 of 309) did not occur.

Minor respondents’ experience with case management and service plan development is generally positive as well. Over 90% of minor respondents report that they are overall satisfied with case management services, that their case manager treats them with respect and that they are able to contact their case manager as needed. Yet, over half of respondents (53%, n=43) did not know or were not sure that they could change case managers if they wanted to. In addition, 63% (50 of 80) of minor respondents wanted to change services or supports in their service plan. Of the requests made, 74% (37 of 50) did not occur.

Over 90% of all respondents report that during the planning meeting, they are able to express their needs; have enough input in service plan development and that they receive all the services and supports stated in their plan. However, about 14% of respondents report that they were not given or do not remember having a choice of providers.

Overall, adult respondents feel safe both in their home and in the community:

• 96% of adult respondents feel safe in their homes.
• 93% of adults feel safe when they leave their home and go into the community.

However, 42 (6%) adult respondents feel unsafe because the people who are paid to help them are not with them when they are supposed to be.

Interviewers asked adult respondents questions about what activities that they engaged in during the day and questions about employment.

• 50% of adult respondents report having a job where they earn money.
• 77% of respondents on the developmental disability (DD) waiver are employed and
• 91% of respondents on Medical Assistance employed persons with disabilities (MA-EPD) are employed.

Adult respondents that reported that they were not currently working at a paid job were asked if they would like to work. The following respondents reported that they would like to work:

• Over 50% (n=137) of all community alternatives for disabled individual (CADI) waiver respondents
• 69% (n=11) of MA-EPD respondents and
• 55% (n=18) of home care respondents.

When interviewers asked respondents if something was holding them back from working, 20% of CADI Waiver respondents and 33% of home care respondents reported that concerns about managing one’s health condition, or restatement of one’s diagnosis were the main reason holding them back from working.

The total cost of the survey was $404,000. The following conclusions and recommendations were offered:

1) Consider survey options such as phone, mail or online survey in addition to face to face interviews
2) Conduct a larger sampling of TBI waiver recipients
3) Prior to relocation of persons in institutions offer a pre- and post-test participant experience survey to persons relocating from nursing facilities, institutions for persons with mental disease and intermediate care facilities for the developmentally disabled.
4) Immediately seek to enhance educational information directed at recipients as well as online training curriculum for providers addressing choice options.

Phil Manz
952.851.2484
pmanz@careproviders.org

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