Dane County Department of Dane County Department of Human Services Survey of Human Services Survey of Consumers and GuardiansConsumers and Guardians

Developed and Administered in Developed and Administered in conjunction with the Dane County conjunction with the Dane County

Developmental Disabilities Developmental Disabilities Coalition, Inc.Coalition, Inc.

Melissa Mulliken Consulting December 2007

Goal of the ResearchGoal of the Research

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

Survey AdministrationSurvey Administration

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

MethodologyMethodology

Mail SurveyMail Survey– Lists of guardians and consumers currently receiving Lists of guardians and consumers currently receiving

services and on the wait list for services were services and on the wait list for services were obtained from the County obtained from the County

– Questionnaires were mailed first class on August 2, Questionnaires were mailed first class on August 2, 2007. A stamped return envelope was provided. No 2007. A stamped return envelope was provided. No incentive was includedincentive was included

– A reminder postcard was mailed on August 13.A reminder postcard was mailed on August 13.– Data was first tabulated in late August. An additional Data was first tabulated in late August. An additional

70 surveys came in after that date and are included in 70 surveys came in after that date and are included in the totals in this presentation.the totals in this presentation.

MethodologyMethodology

Questionnaires Were Mailed To:Questionnaires Were Mailed To:– 1327 consumers1327 consumers– 804 guardians804 guardians

Overall Response Rates Were Very Good:Overall Response Rates Were Very Good:– 37% for consumers37% for consumers– 50% for guardians50% for guardians

DemographicsDemographics

Consumer RespondentsConsumer Respondents– 34% are on the waiting list34% are on the waiting list

161 respondents161 respondents84% receive some services (134 respondents)84% receive some services (134 respondents)16% receive no services (25 respondents)16% receive no services (25 respondents)

GuardiansGuardians– 24% have a ward on the waiting list24% have a ward on the waiting list

95 respondents95 respondents84% receive some services (80 respondents)84% receive some services (80 respondents)16% receive no services (15 respondents)16% receive no services (15 respondents)

DemographicsDemographics

AGES 18-30 31-50 51-61 62+

Guardian ResponsesIncluding wait list and currently served

29% 41% 19% 11%

Consumer ResponsesIncluding wait list and currently served

32.5% 41% 18% 8%

County FiguresCurrently served only

26% 44% 20% 9%

FindingsFindings

Overall, both consumers and guardians are Overall, both consumers and guardians are extremely satisfied with the services they receive extremely satisfied with the services they receive now. now. – 80% of guardians and 81% of consumers say they 80% of guardians and 81% of consumers say they

are very or somewhat satisfied (very happy) with are very or somewhat satisfied (very happy) with residential services.residential services.

– 84% of guardians and 77% of consumers are very 84% of guardians and 77% of consumers are very happy with vocational services.happy with vocational services.

– 90% of consumers not on the wait list are very happy 90% of consumers not on the wait list are very happy with residential serviceswith residential services

87% of consumers are happy with their current 87% of consumers are happy with their current living situation.living situation.

Q’s 2, 10, 11 consumer; Q’s 5, 9 guardian

FindingsFindings

For both consumers and guardians, preserving For both consumers and guardians, preserving the current living situation is most important.the current living situation is most important.– 49% of consumers and 54% of guardians rank living 49% of consumers and 54% of guardians rank living

arrangement as most important arrangement as most important (q. 8 consumer and q. 10 (q. 8 consumer and q. 10 guardian)guardian)

Even consumers who are not happy with their Even consumers who are not happy with their current living situations ranked living current living situations ranked living arrangement number one in terms of importance arrangement number one in terms of importance to them (47%).to them (47%).

We went farther…We went farther…

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

Forced ChoiceForced Choice

This created a certain amount of frustration for This created a certain amount of frustration for all respondents, especially guardians.all respondents, especially guardians.– ““None. This is not acceptable. This is an unfair None. This is not acceptable. This is an unfair

question.” question.” (q. 11)(q. 11)

– ““These These (q 14-16)(q 14-16) are very unfair to ask, everyone are very unfair to ask, everyone should have services.”should have services.”

– ““These Sophie’s Choice questions are profoundly These Sophie’s Choice questions are profoundly insulting. Don’t hand us no guilt trip – we need insulting. Don’t hand us no guilt trip – we need more not less service.”more not less service.”

– ““It is hard to check yes or no on many questions.”It is hard to check yes or no on many questions.”

If Services Need to be Reduced…If Services Need to be Reduced…

42% of consumers would prefer to get less help 42% of consumers would prefer to get less help from a job coach, only slightly more than those from a job coach, only slightly more than those who said they would be willing to live with more who said they would be willing to live with more people (38%).people (38%).– Age has a great deal to do with the answer to this Age has a great deal to do with the answer to this

question: the older the respondent the more likely question: the older the respondent the more likely he/she is willing to work fewer hours, get less help he/she is willing to work fewer hours, get less help from a job coach or go to a group day/service.from a job coach or go to a group day/service.

– The younger the respondent the less likely he/she is The younger the respondent the less likely he/she is willing to work fewer hours or get less help from staff.willing to work fewer hours or get less help from staff.

q. 9 consumer

If Services Need to Be Reduced…If Services Need to Be Reduced…

Q. 11: If services need to be reduced further, which of Q. 11: If services need to be reduced further, which of the following would your prefer for your ward?the following would your prefer for your ward? I would prefer my ward live with more peopleI would prefer my ward live with more people I would prefer my ward go to a group work/day I would prefer my ward go to a group work/day

service during the dayservice during the day OtherOther

About twice as many guardians (42%) About twice as many guardians (42%) would prefer their ward go to a group would prefer their ward go to a group work/day service as opposed to live with work/day service as opposed to live with more people (22%). more people (22%). – (q. 11 guardian)(q. 11 guardian)

If Services Need to Be Reduced: If Services Need to Be Reduced: VerbatimsVerbatims

More than one third of guardians chose More than one third of guardians chose other.other.– ““I don’t think either option is acceptable.”I don’t think either option is acceptable.”

– ““We would prefer to pay higher taxes and share the burden with others. We 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 have worked our whole lives to help our ward be in a position to live independently.”independently.”

– ““I don’t think further reduction is the right thing to do.”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 I am against institutional living and work shelters. My adult deserves to be in a community working just as those reading this do.”in a community working just as those reading this do.”

– ““I finally have a reasonable situation for my daughter that I don’t want I finally have a reasonable situation for my daughter that I don’t want changed.”changed.”

Who is willing to have more Who is willing to have more roommates? roommates?

287 consumers (64%) say they could be 287 consumers (64%) say they could be happy living with one roommate.happy living with one roommate.– 97 already do97 already do– 19 live alone19 live alone– 124 with family124 with family– 119 are on the wait list119 are on the wait list

q. 4 consumer

Who is willing to have more Who is willing to have more roommates?roommates?

173 consumers (40%) say they could be 173 consumers (40%) say they could be happy living with two roommates.happy living with two roommates.– 20 already do20 already do– 37 live with one roommate37 live with one roommate– 7 live alone7 live alone– 76 are on the wait list76 are on the wait list

q. 4 consumer

Who is willing to have more Who is willing to have more roommates?roommates?

95 consumers (22%) say they could be 95 consumers (22%) say they could be happy with three or more roommates.happy with three or more roommates.– 10 live with three roommates10 live with three roommates– 7 live alone7 live alone– 15 with one roommate15 with one roommate– 5 with two roommates5 with two roommates– 42 are on the waiting list42 are on the waiting list

q. 4 consumer

Congregate LivingCongregate Living

When forced to make a choice about When forced to make a choice about authorizing different living arrangements:authorizing different living arrangements:

– 81% of guardians say they would authorize a house with four people with 81% of guardians say they would authorize a house with four people with developmental disabilitiesdevelopmental disabilities

– 23% an apartment complex with more than eight people with developmental 23% an apartment complex with more than eight people with developmental disabilitiesdisabilities

– 17% an assisted living facility17% an assisted living facility

– 13% a house with 5-8 people13% a house with 5-8 people

– 7% a nursing home with day activities outside the facility7% a nursing home with day activities outside the facility

– 3% a nursing home, 24/73% a nursing home, 24/7

q. 12 guardian

It would take considerable work, under the waivers, to make some of these options available.

Vocational ChangesVocational Changes

When forced to make a choice about different vocational When forced to make a choice about different vocational service delivery models:service delivery models:

– Nearly half of guardians choose “going to a place where people Nearly half of guardians choose “going to a place where people without disabilities work but where all people with developmental without disabilities work but where all people with developmental disabilities work in a designated area.”disabilities work in a designated area.”

– 43% of guardians would authorize “going to a place where only 43% of guardians would authorize “going to a place where only people with developmental disabilities work.”people with developmental disabilities work.”

– 37.5% of guardians would authorize “going to a place where only 37.5% of guardians would authorize “going to a place where only people with developmental disabilities did activities, not work”people with developmental disabilities did activities, not work”

– 28.5% would authorize “going to a place where people with 28.5% would authorize “going to a place where people with developmental disabilities work on a separate work crew.”developmental disabilities work on a separate work crew.”

q. 13 guardian

Congregate Living and Work: Congregate Living and Work: VerbatimsVerbatims

– ““Thought we were moving away from congregate living. Thought we were moving away from congregate living. Your philosophy doesn’t match your budget.”Your philosophy doesn’t match your budget.”

– ““What revolting suggestions. Are you serious?”What revolting suggestions. Are you serious?”

– ““I don’t like any of these choices I don’t like any of these choices (q. 13).(q. 13). They represent a They represent a turn backwards in time and go against the excellent turn backwards in time and go against the excellent philosophical approach Dane Co. has always embraced….It philosophical approach Dane Co. has always embraced….It is frightening to think that we would agree to drastically is frightening to think that we would agree to drastically reduce quality and go back in time philosophically…This reduce quality and go back in time philosophically…This survey suggests a return to the dark ages.”survey suggests a return to the dark ages.”

– ““Sheltered workshops: hell no!”Sheltered workshops: hell no!”

Service Reductions to Fund OthersService Reductions to Fund Others

Guardians say “no” to reductions in their ward’s Guardians say “no” to reductions in their ward’s existing services to fund new clients.existing services to fund new clients.

– 85.5% say they would not accept a reduction to 85.5% say they would not accept a reduction to fund new high school graduatesfund new high school graduates

– 80% say they would not accept a reduction to 80% say they would not accept a reduction to fund people on the wait listfund people on the wait list

– 77% say they would not accept a reduction to 77% say they would not accept a reduction to fund individuals with a newly acquired brain fund individuals with a newly acquired brain injuryinjury

Q’s 14-16 guardian

Service Reductions to Fund Others: Service Reductions to Fund Others: VerbatimsVerbatims

– ““Questions 14-16 are difficult. I would feel bad if Questions 14-16 are difficult. I would feel bad if my daughter’s services need to be cut but I do my daughter’s services need to be cut but I do know the urgency of some on waiting lists.”know the urgency of some on waiting lists.”

– ““If more people are accepted more funding should If more people are accepted more funding should be made available.”be made available.”

– ““Is there no other way to raise money than taking Is there no other way to raise money than taking it away from those now being served?”it away from those now being served?”

SummarySummary

People are very satisfied with the services People are very satisfied with the services they get now.they get now.

Certain changes in residential and Certain changes in residential and vocational services are palatable to certain vocational services are palatable to certain individuals. This research can help individuals. This research can help describe the characteristics of those describe the characteristics of those individuals. individuals.

For More InformationFor More Information

Melissa MullikenMelissa MullikenMelissa Mulliken ConsultingMelissa Mulliken Consulting

3306 Gregory Street3306 Gregory Street

Madison, WI 53711Madison, WI 53711

608/231-3859608/231-3859

melissa@mmulliken.commelissa@mmulliken.com

Dane County Human Services Dane County Human Services Survey of Consumers and Survey of Consumers and

GuardiansGuardians

Developed and Administered in Developed and Administered in conjunction with the Dane County conjunction with the Dane County

Developmental Disabilities Developmental Disabilities Coalition, Inc.Coalition, Inc.

Melissa Mulliken Consulting December 2007