Muscatatuck Family Survey - 1

MuscatatuckState Developmental Center

Family FOllow-up Survey of Individuals who Had left in

2001, 2002, and 2003

Submitted to:

Division of Disability, Aging, and Rehabilitative Services

Indiana Family and Social Services Administration

Submitted by:

Teresa Grossi, Ph.D., Alberto Migliori, M.S., and David Mank, Ph.D.,

Center on Community Living and Careers

Indiana Institute On Disability and Community

IndianaUniversity

2853 E. Tenth Street

Bloomington, IN47408

(812) 855-6508

March 4, 2005

MuscatatuckState Developmental Center

Family Follow-up Survey

Purpose

The purpose of this survey was to determine the overall satisfaction of family members/guardians of individuals with disabilities who had moved from MuscatatuckStateDevelopmentalCenter. The intention was to assess the effectiveness of the moving process in order to make improvements where possible. The survey included 18-questions about the moving process, satisfaction with the process, and satisfaction with quality of life matters for their loved ones using a likert scale and open-ended questions. The telephone survey required approximately 10 minutes to complete. Results of the survey were to be used to adjust the process accordingly.

The initial survey was conducted in 2002 (1-year after leaving the Center), repeated in 2003 and 2004. Therefore, we have data for those individuals who had left in 2001 for 3 years; 2002 for 2 years and 2003 for 1 year. Initial information from individuals who had left Muscatatuck in 2001 and 2002 was gathered in the spring of 2002 and 2003 respectively; and for individuals who had left Muscatatuck in 2003, information was gathered in the fall of 2004.

Respondents

A contact person from Division of Disability, Aging and Rehabilitative Services (DDARS) was responsible for getting the names, addresses, contact person (e.g., guardian, health care representative) and signatures to meet HIPAA requirements.

Methodology

  • A letter was sent by the Director of DDARS to each family member informing them of the upcoming call, who would be making the call, and the purpose. The letter informed the family/guardian that the participation was voluntary, confidential and they can refuse to participate by telling the interviewer.
  • Approximately 1 -2 weeks after the letter was sent, a call was made by a representative of the Indiana Institute On Disability and Community, IndianaUniversity, Bloomington, IN. Each respondent was asked if they would be willing to answer a few questions regarding the overall satisfaction of the process for their loved ones leaving Muscatatuck and reminded of the purpose, confidentiality and voluntarily participating.
  • Three (3) attempts to connect with a family member (after leaving a message) were made to obtain information. After three attempts, the respondent was identified as a nonrespondent.

Highlights of the report include:

  • As pleased as the respondents were with the overall satisfaction with Muscatatuck services for all the years respectively (66%; 67%; 54%), the respondents were more pleased with their loved one’s life afterleaving the Center (71%; 89%; 82%).
  • There seemed to be more variability in the responses on how individuals, family members or guardians felt about leaving Muscatatuck for all three years. Forty-one percent (41%) were pleased or very pleased about leaving the Center during years 2001 and 2002 while over 36% and 39% respectively, were either worried or very worried. In 2003, the respondents were more uncertainty (39%) and concerns (36%) about leaving than previous years.
  • For all three years, respondents felt they were very informed of the moving process and knew specifically who to call if they had questions.
  • Since leaving Muscatatuck, most respondents have seen changes in personal skill improvement, more access to community, overall quality of life improvements, more attention or better care, more outgoing or social as well as decrease in behaviors.
  • Most respondents talked about continued current services standards remaining the same andimproving personal skills when asked about the future or changes they would like to see occur.
  • When asked about the biggest surprise since the move, 39% of the respondents talked about their loved one’s improved health and skills.
  • For those individuals who left Muscatatuck in years 2002 and 2003, they seem to see their families much more often. Many families spoke of how it is easier since their loved ones are living closer or how the provider assists with visits.
  • For families who had advice for other families leaving Muscatatuck or other DevelopmentalCenters, most families spoke of choosing a good provider and getting a lot of information,

Survey Questions and Responses

Respondents

The total number of names provided by the Division of Disability, Aging and Rehabilitative Services (DDARS) to be interviewed and the number successfully interviewed are provided in the following table by the year leaving Muscatatuck.

Year Left / Attempted / Completed / Percentage
2001 / 39 / 23 / 59%
2002 / 33 / 26 / 79%
2003 / 37 / 33 / 89%

Previous Years Response Rate

Year Left / 2002 Survey / 2003 Survey
2001 / 41 (79%) / 30 (64%)
2002 / N/A / 36 (69%)

Reasons for Not Participating in the 2004 Survey

Year Left / Refused / Resides in other state facility or nursing home / Wrong Number / Multiple Attempts / Other*
2001 / 5 (13%) / 4(10%) / 4 (10%) / 1 (3%) / 2 (5%)
2002 / 1 (3%) / 0 / 2 (6%) / 2 (6%) / 2 (6%)
2003 / 0 / 0 / 2 (5%) / 2 (5%) / 0

* Other = there is not contact with the person or no longer Health Care Representative

I. Pre-Move Information

The first 7 questions elicit information on the satisfaction with services while at Muscatatuck. For questions1-7, information from individuals who had left Muscatatuck in 2001 and 2002 was gathered in the spring of 2002 and 2003 respectively;and for individuals who had left Muscatatuck in 2003, information was gathered in the fall of 2004. Information for questions 1-7 was only gathered once.

1. How satisfied were you with services at Muscatatuck?

The majority of the respondents for individuals who had left during the 3 years were pleased (49%; 39%; 39%) or very pleased (17%; 27%; 15%) with the services received at Muscatatuck with isolated incidents of displeasure (e.g., hygiene, unit residing on, care given by staff, not getting enough attention). A few of the respondents talked about the length of time their loved one lived at Muscatatuck (e.g., 35-40 years).

2. How satisfied were you with the staff at Muscatatuck?

The majority of the responses were pleased (54%; 42%; 61%) or very pleased (20%; 28%;12%) with the staff at Muscatatuck and the care they gave to their loved ones over the years. Since some of the individuals had lived at Muscatatuck for 35-40 years, family members commented on many relationships that were built over time.

3. How satisfied were you with environment (e.g., building, grounds, food, etc.) at Muscatatuck?

The 2001 respondents tended to be more pleased or very pleased (73%) with the overall living environment of their loved ones than the respondents in 2002 and 2003 (61% and 63% respectively).

4. How did you feel about your loved one leaving Muscatatuck?

There seemed to be more variability in the responses on how individuals, family members or guardians felt about leaving Muscatatuck for all years. Forty-one percent (41% and 42%) were pleased or very pleased about leaving the Center during years 2001 and 2002 while over 37% and 39% respectively, were either worried or very worried. In 2003, the respondents were more uncertain (39%) and worried or very worried (36%)about leaving.

Year Left / Very Pleased/Pleased / Uncertain / Very Worried/Worried
2001 / 41% / 22% / 37%
2002 / 42% / 19% / 39%
2003 / 24% / 39% / 36%
  1. How informed were you during the planning and moving process for your loved one?

Over half of the respondents during all threeyears felt they were very informed during the planning and actual moving process from the Center.

  1. When you needed information did you have someone to call?

Again, all three years indicated (over 90%) that families and guardians knew who to call if they needed assistance or information.

7. Were people responsive to your questions?Almost all of the respondents knew the actual person to call to receive information or for questions. Additionally, the respondents felt the staff was very responsive to their questions or concerns.

II. POST MOVE INFORMATION

For questions 8 through 18, the individuals who had left in 2001 responded to the same questions in 2002 and 2003; and for those who had left in 2002 responded to these questions both in 2003 and 2004.

  1. How satisfied are you with your loved one’s life now?

As pleased as the respondents were with the overall satisfaction with Muscatatuck services for all the years respectively (66%; 67%; 54%), the respondents were more pleased with their loved one’s life after leaving the Center (71%; 89%; 82%).

For those families that are worried about their loved ones, most of the comments centered around lack of activity (e.g., always sitting in a chair, watching a lot of TV), lack of communication with caregivers, and eating nutritional meals.

More interesting was when the 2001 respondents answered the same question of satisfaction with their loved one’s life in the subsequent years, they had a higher level satisfaction (71%, 80%, 78%),while 2002 respondents remained at 89% satisfaction for each of the subsequent years interviewed.

  1. Do you see a difference in the quality of your loved ones life now?

Overall the respondents from all years were pleased or very pleased (71%, 77% and 79% respectively) with the quality of their loved ones life one year after leaving the DevelopmentalCenter. Interesting was the 2001 respondents believed there was a larger difference in their loved ones life from 2 yearsafter leaving (71% vs 89%), and now (3 years later) appears to be more the same (74%) as year 1. This could be due to the respondents comparing the previous year rather than when they actual left Muscatatuck.

Respondents believed there is a difference in the areas of more involvement in the community, ability to make own choices, living environment is more like a home, better health, better attitude, gets out to do more activities, and ”more like himself”.

10. Were you informed of the findings/results from the visits by the Bureau of Quality Improvement Services?

There seem to be an improvement from individuals leaving in 2001 (27%) with individuals leaving in 2002 (68%) regarding information about the Bureau of Quality Improvement Services. However there was only a slight improvement (27% to 37%) of knowledge about the Bureau of Quality Improvement Services for individuals who had left in 2001 from 2002 to 2003. Only 39% of the respondents who left in 2003 were informed of the BQIS findings or results from visits.

11. If yes to Question 10, are you satisfied that any problems identified have been corrected?

All respondents who knew of the findings and results by the Bureau of Quality Improvement Services were satisfied with the outcomes.

  1. What changes have happened for your loved one since moving from Muscatatuck?

Questions 12 through 17 were open-ended questions to allow families to identify changes, improvements and/or concerns. The following themes were consistent in all groups. For changes in their life, improvement in personal skills (e.g., daily living skills, community skills) or their overall quality of life emerged very strong in each of the groups as well as community access.

Year Left / Themes / Occurrences / Percentage
2001 /
  • Personal skill improvement or improvement in quality of life
  • More attention and better care
  • More choices, freedom, involved more in daily routines
  • Decreased behaviors and aggression
  • Overall happier
  • Improved health
  • More social, more outgoing, and more friends
  • More community access
  • More respect for his age (e.g., 71) and need for less scheduled activities.
  • Decline in personal hygiene
  • Health is worse but unexplainable
/ 5
5
2
4
1
2
4
14
2
1
1 / 22%
22%
9%
17%
4%
9%
17%
61%
9%
4%
4%
2002 /
  • Personal skill improvement or improvement in quality of life
  • More attention and better care
  • More choices, freedom, involved more in daily routines
  • Decreased behaviors and aggression
  • Overall happier
  • Improved health
  • More social, more outgoing, and more friends
  • More community access
  • Working for pay
  • No changes
  • More exposed to risks
  • Less routine
/ 7
1
4
1
6
6
2
3
3
2
1
1 / 27%
4%
15%
4%
23%
23%
8%
12%
12%
8%
4%
4%
2003 /
  • Personal skill improvement or improvement in quality of life
  • More attention and better care
  • More choices, freedom, involved more in daily routines
  • Decreased behaviors and aggression
  • Overall happier
  • Improved health
  • More social, more outgoing, and more friends
  • More community access
  • Doing less or unhappy with services
  • Not sure
/ 13
6
3
2
3
6
6
5
3
3 / 39%
18%
9%
6%
9%
18%
18%
15%
9%
9%
  1. What changes or improvements would you like to see for your loved one in the next year?

All three groups indicated that they would like the current services or standards to remain for their loved ones.

Year Left / Themes / Occurrences / Percentage
2001 /
  • Continue with current services/standards
  • Improve health
  • Increase in community access
  • Improvement in personal skills
  • Better and/or continuity of staff
  • More work or day programs
  • Not sure
/ 10
4
1
2
1
1
4 / 43%
17%
4%
9%
4%
4%
17%
2002 /
  • Continue with current services/standards
  • Improve health
  • Increase in community access
  • Improvement in personal skills
  • Better and/or continuity of staff
  • Not sure
/ 9
2
3
6
2
3 / 36%
8%
12%
24%
8%
12%
2003 /
  • Continue with current services/standards
  • Improve health
  • Increase in community access
  • Improvement in personal skills
  • Better and/or continuity of staff and services
  • Not sure
/ 16
4
4
4
3
3
1 / 48%
12%
12%
12%
9%
9%
3%

14. What do you see for your loved one’s future?

All of the groups talked about wanting more of the same in having their loved ones to continue improving their personal skills, quality of life, and having the same type of services and activities ( jobs, accessing community, social, etc) in their life.

Year Left / Themes / Occurrences / Percentage
2001 /
  • More of the same
  • Being happy
  • Improved health and health care
  • Keep improving
  • Good quality of life
  • Paid job
  • Not sure
/ 8
3
1
6
2
1
2 / 35%
13%
4%
26%
9%
4%
9%
2002 /
  • More of the same
  • Good care takers
  • Being happy
  • Keep improving
  • Stability
  • Good quality of life
  • Not sure
/ 15
2
2
3
2
3
1 / 60%
8%
8%
12%
8%
12%
4%
2003 /
  • More of the same
  • Being happy
  • Improved health and health care
  • Keep improving
  • Good quality of life
  • Paid job
  • Increased community involvement
  • Not sure
/ 11
4
2
3
3
3
2
3 / 33%
12%
6%
9%
9%
9%
6%
9%
  1. What has been the biggest surprise since the move?

Again, all groups spoke in detail of their pleasant surprises of not only the ease of the transition but the improvements made in their personal skills, health, communication, social skills, and overall life. Many spoke of their heightened expectations now that they see what their loved ones can really do.

Year Left / Themes / Occurrences / Percentage
2001 /
  • His or her improvement (e.g, skill and health)
  • Ease of transition
  • Better quality of life
  • How much I get to see him
  • Worse conditions
  • Not sure
  • Nothing
/ 10
5
2
1
1
1
3 / 43%
22%
9%
4%
4%
4%
13%
2002 /
  • His or her improvement (e.g, skill and health)
  • Ease of transition
  • Good staff
  • How much I get to see him/her
  • Worse conditions
  • Not sure
/ 11
4
1
4
1
4 / 44%
16%
4%
16%
4%
16%
2003 /
  • His or her improvement (e.g, skill and health)
  • Ease of transition
  • Better quality of life
  • Good staff
  • Staff turnover/Poor staff/providers
  • Worse conditions
  • Not sure/No surprises
/ 10
7
2
4
1
2
5 / 30%
21%
6%
9%
3%
6%
15%
  1. Do you see your loved one more often now? Less often? About the same?

For those individuals who left Muscatatuck in years 2002 and 2003, they seem to see their families much more often. Many families spoke of how it is easier since their loved ones are living closer or how the provider assists with visits.

Year Left / More Often / About the Same / Less Often
2001 / 43% / 43% / 13%
2002 / 60% / 36% / 4%
2003 / 70% / 18% / 9%
  1. Do you have any advice for other family members as their loved ones leave Muscatatuck?

Year Left / Themes / Occurrences / Percentage
2001 /
  • Choose a good provider
  • Get a lot of information/get involved
  • Just do it
  • See homes in advance
  • Trust
  • No Advice
/ 4
6
3
3
1
6 / 17%
26%
13%
13%
4%
26%
2002 /
  • Choose a good provider
  • Get a lot of information/get involved
  • Just do it
  • See homes in advance
  • Trust
  • No Advice
  • Don’t allow it
/ 7
3
1
1
1
10
1 / 29%
13%
4%
4%
4%
42%
4%
2003 /
  • Choose a good provider
  • Get a lot of information/get involved
  • Just do it
  • See homes in advance
  • Do it gradually
  • No Advice
/ 10
9
3
4
1
6 / 30%
27%
9%
12%
3%
18%
  1. Additional Comments:
  • Overall it has been a positive experience (52% of all respondents from all three years).
  • There was a small concern of level of services and budget cuts (9%).
  • Over all three years, 11% of the respondents felt Muscatatuck should stay open.