Dane County Department of Human Services Survey of Consumers and Guardians

1. Dane County Department of Human Services Survey of Consumers and Guardians Developed and Administered in conjunction with the Dane County Developmental Disabilities Coalition, Inc. Melissa Mulliken Consulting December 2007

2. Goal of the Research • To obtain information from consumers and guardians in Dane County’s adult DD system about their preferences and priorities when it comes to the residential and vocational services they receive or their ward receives.

3. Survey Administration • The survey was commissioned by the Dane County Department of Human Services and awarded through competitive bid to Melissa Mulliken. • A committee consisting of Dane County Developmental Disabilities Coalition, Inc. (DDC) members and Department staff oversaw the development of the survey and its administration.

4. Methodology • Mail Survey • Lists of guardians and consumers currently receiving services and on the wait list for services were obtained from the County • Questionnaires were mailed first class on August 2, 2007. A stamped return envelope was provided. No incentive was included • A reminder postcard was mailed on August 13. • Data was first tabulated in late August. An additional 70 surveys came in after that date and are included in the totals in this presentation.

5. Methodology • Questionnaires Were Mailed To: • 1327 consumers • 804 guardians • Overall Response Rates Were Very Good: • 37% for consumers • 50% for guardians

6. Demographics • Consumer Respondents • 34% are on the waiting list • 161 respondents • 84% receive some services (134 respondents) • 16% receive no services (25 respondents) • Guardians • 24% have a ward on the waiting list • 95 respondents • 84% receive some services (80 respondents) • 16% receive no services (15 respondents)

7. Demographics

8. Findings • Overall, both consumers and guardians are extremely satisfied with the services they receive now. • 80% of guardians and 81% of consumers say they are very or somewhat satisfied (very happy) with residential services. • 84% of guardians and 77% of consumers are very happy with vocational services. • 90% of consumers not on the wait list are very happy with residential services • 87% of consumers are happy with their current living situation. Q’s 2, 10, 11 consumer; Q’s 5, 9 guardian

9. Findings • For both consumers and guardians, preserving the current living situation is most important. • 49% of consumers and 54% of guardians rank living arrangement as most important (q. 8 consumer and q. 10 guardian) • Even consumers who are not happy with their current living situations ranked living arrangement number one in terms of importance to them (47%).

10. We went farther… • In both the consumer and guardian surveys we asked respondents to make hard choices. • For guardians, we asked both forced choice questions and questions in which we did not provide an “other” or “no opinion” response (q’s 12-16 guardian)

11. Forced Choice • This created a certain amount of frustration for all respondents, especially guardians. • “None. This is not acceptable. This is an unfair question.” (q. 11) • “These (q 14-16) are very unfair to ask, everyone should have services.” • “These Sophie’s Choice questions are profoundly insulting. Don’t hand us no guilt trip – we need more not less service.” • “It is hard to check yes or no on many questions.”

12. If Services Need to be Reduced… • 42% of consumers would prefer to get less help from a job coach, only slightly more than those who said they would be willing to live with more people (38%). • Age has a great deal to do with the answer to this question: the older the respondent the more likely he/she is willing to work fewer hours, get less help from a job coach or go to a group day/service. • The younger the respondent the less likely he/she is willing to work fewer hours or get less help from staff. q. 9 consumer

13. If Services Need to Be Reduced… Q. 11: If services need to be reduced further, which of the following would your prefer for your ward?  I would prefer my ward live with more people  I would prefer my ward go to a group work/day service during the day  Other • About twice as many guardians (42%) would prefer their ward go to a group work/day service as opposed to live with more people (22%). • (q. 11 guardian)

14. If Services Need to Be Reduced: Verbatims • More than one third of guardians chose other. • “I don’t think either option is acceptable.” • “We would prefer to pay higher taxes and share the burden with others. We have worked our whole lives to help our ward be in a position to live independently.” • “I don’t think further reduction is the right thing to do.” • “I am against institutional living and work shelters. My adult deserves to be in a community working just as those reading this do.” • “I finally have a reasonable situation for my daughter that I don’t want changed.”

15. Who is willing to have more roommates? • 287 consumers (64%) say they could be happy living with one roommate. • 97 already do • 19 live alone • 124 with family • 119 are on the wait list q. 4 consumer

16. Who is willing to have more roommates? • 173 consumers (40%) say they could be happy living with two roommates. • 20 already do • 37 live with one roommate • 7 live alone • 76 are on the wait list q. 4 consumer

17. Who is willing to have more roommates? • 95 consumers (22%) say they could be happy with three or more roommates. • 10 live with three roommates • 7 live alone • 15 with one roommate • 5 with two roommates • 42 are on the waiting list q. 4 consumer

18. Congregate Living • When forced to make a choice about authorizing different living arrangements: • 81% of guardians say they would authorize a house with four people with developmental disabilities • 23% an apartment complex with more than eight people with developmental disabilities • 17% an assisted living facility • 13% a house with 5-8 people • 7% a nursing home with day activities outside the facility • 3% a nursing home, 24/7 q. 12 guardian It would take considerable work, under the waivers, to make some of these options available.

19. Vocational Changes • When forced to make a choice about different vocational service delivery models: • Nearly half of guardians choose “going to a place where people without disabilities work but where all people with developmental disabilities work in a designated area.” • 43% of guardians would authorize “going to a place where only people with developmental disabilities work.” • 37.5% of guardians would authorize “going to a place where only people with developmental disabilities did activities, not work” • 28.5% would authorize “going to a place where people with developmental disabilities work on a separate work crew.” q. 13 guardian

20. Congregate Living and Work: Verbatims • “Thought we were moving away from congregate living. Your philosophy doesn’t match your budget.” • “What revolting suggestions. Are you serious?” • “I don’t like any of these choices (q. 13). They represent a turn backwards in time and go against the excellent philosophical approach Dane Co. has always embraced….It is frightening to think that we would agree to drastically reduce quality and go back in time philosophically…This survey suggests a return to the dark ages.” • “Sheltered workshops: hell no!”

21. Service Reductions to Fund Others • Guardians say “no” to reductions in their ward’s existing services to fund new clients. • 85.5% say they would not accept a reduction to fund new high school graduates • 80% say they would not accept a reduction to fund people on the wait list • 77% say they would not accept a reduction to fund individuals with a newly acquired brain injury Q’s 14-16 guardian

22. Service Reductions to Fund Others: Verbatims • “Questions 14-16 are difficult. I would feel bad if my daughter’s services need to be cut but I do know the urgency of some on waiting lists.” • “If more people are accepted more funding should be made available.” • “Is there no other way to raise money than taking it away from those now being served?”

23. Summary • People are very satisfied with the services they get now. • Certain changes in residential and vocational services are palatable to certain individuals. This research can help describe the characteristics of those individuals.

24. For More Information • Melissa Mulliken Melissa Mulliken Consulting 3306 Gregory Street Madison, WI 53711 608/231-3859 melissa@mmulliken.com

25. Dane County Human Services Survey of Consumers and Guardians Developed and Administered in conjunction with the Dane County Developmental Disabilities Coalition, Inc. Melissa Mulliken Consulting December 2007