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Acting Commissioner Kristin M. Woodlock, RN, MPA
Governor Andrew M. Cuomo
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Testimony from Mathew Roosa, ACSW, LCSW-R, Director of Planning and Quality Improvement for the Onondaga County Department of Mental Health

My name is Mat Roosa and I am the Director of Planning and Quality Improvement for the Onondaga County Department of Mental Health. Thank you for the opportunity to speak with you today.

As you know our Department, like other County Mental Health Departments, has a broad role in the planning and delivery of services. In keeping with the important theme of consumer and family centeredness, I would like to focus my remarks today on one part of this Broad role, and that is our Department's efforts to increase the degree to which our services are consumer centered, and consumer driven.

Specifically I will share the story of some recent efforts to include consumers in our local planning process. Hopefully this story helps to shed light on some of the challenges of seeking to do consumer and family centered local planning, and may contribute to the dialogue regarding how Counties can best partner with OMH regarding this effort.

As we are all aware, traditionally there has been limited consumer involvement in local service planning. As a member of the Western New York Care Coordination Program for the last five years, Onondaga County has been a part of a process that has been inclusive of consumers at all levels. As a result we have been working to incorporate this kind of inclusion in other areas of our work, including our planning processes.

So this story can be best framed as a series of goods news/bad news events:

Good News: We do surveys and focus groups.
Our Department has conducted local planning surveys for a number of years using an online survey tool. As a reflection of our effort to de-silo and integrate efforts across disability areas, these surveys are directed toward providers, recipients and family members involved with mental health, chemical dependency, and developmental disability services. The content of the surveys is not divided by disability group or role. While one could argue with the validity and reliability of some of our questions, we feel that we gather valuable data which assists our prioritization of projects for the coming year. This data is often used as a conversation starter with providers and recipients regarding planning system wide strategies.

We also conduct targeted focus groups and surveys, including recent conversations with inpatient recipients, and focus groups regarding unmet needs, and how recipients choose providers. I will attach a copy of a summary of the results of these survey efforts.

Bad News: Few consumers have participated in the online survey.
Even though we have supported expansions in computer access and training for recipients in programs, peer organizations, and community settings, participation for peers and families has remained limited

Good News: We created better access for consumers, and more completed the surveys. There was a simple solution to this dilemma of modest peer and family participation. We made paper copies and distributed them to a number of provider and peer organizations. We then collected the completed surveys and entered the data into the online system. We also conducted some other focus groups to gather additional information. The paper survey option was also offered to provider organizations. These efforts resulted in 349 participants in our most recent survey.

Bad News: Even after these efforts, still not that many recipients and family members participated, and almost none of them were teens.

Just under a third of the participants in this most recent survey were recipients and family members, and only 3% of them were under the age of 18.

Good News: We did outreach to teens through focus groups, to understand their needs and perspectives. Some interesting differences emerged in reviewing the responses of teens and adults: For example, adult participants (even when sorting based on age, or recipient vs. provider status) consistently placed children at the highest priority for service access and older adults at the lowest priority. (The older you are, the lower the priority score).

Our teen respondents continued this trend by defining children and teens as the top two priorities. But then something interesting appeared. They departed from the adults by ranking adults over 65 and adults ages 40 to 64 as the 3rd and 4th priorities, respectively. So, Surprise: the teens cared more about the service needs of seniors than the people who would soon be seniors! Perhaps they were acknowledging that they need their parents and grandparents, and that they see their parents and grandparents struggling.

Good News: Important themes emerged. One theme that has been clear in our recent data gathering is the importance of family and natural supports:

Bad news: (ongoing challenges)

  1. We need to do more to share the results of these surveys and focus groups with the recipient and family participants. It is easy for us to send an email attachment to all of the provider organizations who we survey. We need to work harder to talk to the recipients and family members.
  2. And bevond sharing the results, we need to discuss the results with the recipients and family members, the way we discuss them with providers
  3. And bevond discussing the results, we need to ensure that recipient and family members have the opportunity to take action resulting from these discussions, and participate in planning decisions. (including the development of the surveys, etc)
  4. We need to engage more recipients and family members in the process.

I think if we do 1, 2, and 3 above:

Then we will naturally engage more recipients and family members.

In conclusion, let me again thank you for this opportunity, and let me share our Department's desire to engage in dialogue regarding how Counties can best partner with recipients, families and OMH regarding consumer and family centered planning.

Listening to our Community

In order to effectively plan for the needs of residents, our Department uses a variety of forums to gather information about behavioral health services in Onondaga County. We seek the feedback from a wide range of stake holders, including recipients and providers of services.

This report summarizes the following four efforts to listen to our community:

  1. Unmet Needs Focus Groups (Spring 2006)
  2. Choosing a Provider Focus Group (Jan 2007)
  3. Inpatient Survey (Summer of 2006)
  4. Online Survey (Fall of 2006)

As always, we welcome your responses to this report, and thank you for taking the time to participate in this process. In the words of one survey respondent, "Different people have different needs." It is the intent of our Department to continue to find ways to understand these individual needs, and to find better ways to support those who provide and receive behavioral health services in Onondaga County.

Executive Summary

Unmet Needs Focus Groups

What are the most important unmet needs of people with substance use and mental health conditions in our County?

Responses to this question were elicited from 45 individuals receiving services in the following four settings:

Individual responses were grouped into categories and ranked based upon the volume of items reported in each category. The list below includes all of the categories (11 in total) that were represented by a significant volume of responses. "Information exchange" refers to a number of responses that pointed to the need for assistance in both acquiring and sharing information about services and support in the community.

  1. Life Skills
  2. Work & Educational Opportunities
  3. Treatment Services
  4. Benefits
  5. Housing
  6. Information Exchange
  7. Medication Supports
  8. Transportation
  9. Provider Education
  10. Stigma
  11. Advocacy

Choosing a Provider Focus Group

"What information would be helpful in choosing a provider?"

OCDMH is a member, along with representatives from 5 other Counties, of the Western New York Care Coordination Program. WNYCCP is working in partnership with NYS OMH to develop person centered supports for people with serious mental illness that foster recovery. In an effort to understand the kinds of data that would support these efforts at system transformation, WNYCCP decided to ask consumers about the data that they would find helpful in choosing a provider.

A focus group was conducted with nine members of the Onondaga County WNYCCP Peer and Family group, using a nominal group technique. The members of the group shared in common significant histories of personal and/or family experience as recipients of services as well as experience advocating on a number of mental health issues. Several of the participants also had provider experience as they are currently employed in the mental health field. The group discussed the current reality of choosing a provider as similar to the game show Let's Make a Deal: You never really know what's behind the curtain until after you have made your choice. Clearly, such a blind choice is not a real choice, and the focus group participants shared many ideas about the kinds of information that would help them to make a truly informed choice.

The Person, not the Program
Recipients care about the individual service provider with whom they will be working, far more than they care about the features of the provider organization. This is certainly no surprise, as so many sources have furthered the conclusion that the relationship is the most important variable in the complex process of recovery. Relationship issues are also reflected in some of the other categories below. The focus group identified the following traits/questions as important in choosing an individual with whom they would want to work:

Do they Believe in Recovery?
The group participants all shared a strong belief in the need for services to focus on supporting people toward the achievement of life goals and healthy functioning. They identified the following traits/questions as indicators that a provider believes in their potential to recover:

Service Quality & Choice
During the group discussion, "quality" and "choice" were strongly linked. Clearly this group felt that services cannot be of high quality if they do not include recipient choice. The focus group identified the following traits/questions as important indicators of quality and choice:

Access Issues
Often simple and concrete obstacles to accessing services create stumbling blocks for those in need. The focus group identified the following traits/questions as important access indicators:

Inpatient Survey

As a result of some discussions with inpatient providers, OCDMH conducted a survey of inpatient recipients during the summer of 2006. This voluntary point in time survey engaged 69 recipients of inpatient services at Community General Hospital, St Joseph's Hospital, and on three Adult Units at Hutchings Psychiatric Center. The participants were asked the following four open ended questions, and were given assistance as needed in recording their answers on paper. The four questions all centered upon providing recipients an opportunity to describe the kinds of supports that they find most helpful.

4 Inpatient Survey Questions:

  1. What supports do you think you will need after you leave the hospital?
  2. What supports would help you to avoid coming back to the hospital?
  3. What are some of the supports that have helped you in the past?
  4. What kinds of supports have you had when things were going well?

The list below includes all of the items that were reported at least ten times in response to the above questions, along with the total number of reports after the item. These totals are duplicative, (e.g. an individual who reported on the value of family supports in response to three of the questions, was counted three times in the total of 108 family responses.) It is note worthy that nine of the fourteen items, as indicated by a star, reflect supports that are natural and community based. Over 38% of the responses reported family and friends (items 1 and 2) as important supports.

1*      Family 108
2*      Friends/Social Supports 62
3        Psychiatrist/Meds 50
4        Therapy /Counseling 46
5*      Housing 28
6*      Healthcare (Primary Care Dr./ Nurse) 27
7*      Money/Jobs 23
8        Outpatient 20
9        Case Management 19
10      Medicare, Medicaid, SSI, SSD, Social Services 16
11*    Church 13
12*    Education 11
13*    Understanding/Respect 10
14*    Activities /Clubs 10

Online Survey

In the fall of 2006, OCDMH conducted another online survey. In order to enhance the participation of service recipients, paper surveys were widely distributed. A wide range of service providers assisted recipients in completing the surveys by supporting this paper distribution, and by supporting computer access for online completion. It should be noted that an overall increase in access to computers and internet access was apparent, as a variety of service providers reported their efforts to install computers and to support recipients in the development of computer skills.

Recipients and family/friends represented almost a third of the individuals who participated (29% and 8%, respectively). While 32% of the respondents indicated that they were providers of mental health services, only 3% reported that they were providers of substance use services. Efforts will be made in the future to maintain a large number of recipient participants, and to increase participation among family members and substance use service providers.

The vast majority of survey participants were between the ages of 22 and 64. The largest number of participants indicated a significant amount of experience as recipients and/or providers of services. OCDMH is currently considering efforts to seek feedback from the younger and older populations who were not adequately represented. Targeted data gathering approaches will be developed and implemented during 2007 in order to insure that the voices of seniors, young adults, and children are included in our planning efforts.

Priority Age Groups
We asked respondents to indicate the age groups that they thought should be the priority for services. Consistently, respondents prioritized children's needs as most important, and placed the needs of seniors at the lowest priority level. This pattern (the older the age group, the lower the prioritization) remained in place when provider and recipient responses were reviewed separately, and also when sorting the data based upon the age of the respondents. Regardless of age or role, the respondents placed children's needs at the top of the list, and the needs of seniors at the bottom.

Priority level: Age Group
#1 0-12 yrs
#2 13-17 yrs
#3 18-21 yrs
#4 22-39 yrs
#5 40-64 yrs
#6 65+ yrs

"I think that during this period, there is more awareness and more effort to define the problem areas and then formulate a plan of action. But this all takes time, money and investment, so I am not sure that there have been concrete signs of improvement as yet!"…

'Good ideas…lack of money…systemic & bureaucratic barriers'.

Are Services getting better or worse?
When survey participants were asks if services had gotten better or worse in recent years, they were also encouraged to share comments. The two comments above reflect a widely reported vision of current opportunities and efforts to improve services that struggle in the face of financial or systemic obstacles. Many recipients reported that they see services getting better, and that they are optimistic about the future. As one recipient put it, "I have a greater sense that providers are truly hopeful that I can overcome my problems and get my life back". But despite this optimism, they often shared comments regarding frustrations about the lack of implementation of improvements and new practices.

So, if recipients are reporting an improvement in services, why are they not also reporting an increase in satisfaction? One might interpret this reported as a collective "raising of the bar": as recipients become more aware of the kinds of services that are helpful to them, they place higher demands upon service providers to implement these improved practices. A large number of providers (42%) reported that the service system has gotten worse. Survey comments indicated that this data could similarly be interpreted as a frustration with the pace of change. It also reflects the financial challenges that providers encounter, as they are asked to deliver enhanced services with fewer resources.

Person Centeredness:
In Onondaga County there has been a strong effort in recent years to develop a more person centered service system. These efforts to encourage recovery and recipient choice have engaged many service providers. OCDMH sought to determine the degree to which providers and recipients have been exposed to Person Centered Planning. The data reveals a strong contrast between the exposure of providers and recipients. While 68% of provider respondents reported that they had heard a lot about person centered planning, almost half of the recipient respondents reported that they had never heard of person centered planning. While the low recognition among recipients does not necessarily mean that they are unfamiliar with the values of PCP, it clearly indicates a need to continue to reach out to recipients and to foster healthy communication through shared language.

Survey respondents were asked to choose from a list of services, and to indicate the services that they found to be most important. It is striking that three categories (care coordination, respite, and alternative services) can be found in these priority lists for both groups. Clearly, there is strong consensus that these items are critical to our service system.

Top 5 Service Priorities

Recipients:

  1. Care Coordination
  2. Prevention and Education about maintaining good mental health
  3. Respite Services
  4. Family Support and Education
  5. Alternative/complementary services

Providers:

  1. Residential Services
  2. Respite Services
  3. Care Coordination
  4. Alternative/complementary services
  5. (4-way tie)

Service Coordination
A wide range of coordination efforts in the behavioral health service system in Onondaga County have been undertaken in recent years. These have included coordination between providers of substance use and mental health service providers, provider learning collaboratives, and a number of community wide initiatives that have brought together groups of service providers. In responding to the question about coordination many service recipients expressed their concerns about the protection of their confidentiality. Clearly there is much concern in our community about the potential for privacy to be compromised as traditional barriers between systems and providers are decreased through collaboration. Other comments regarding collaboration included the need to address "turf issues" between providers, and the need to avoid limiting recipient choice by consolidating service. Respondents were clear in their belief that coordination among providers should be undertaken to benefit recipients, and not just as a vehicle for provider survival.

Service Improvement
Survey respondents offered many ideas and perspectives regarding ways to improve service quality. These comments and suggestions were individually reviewed and gathered into the categories below. Most of the bulleted items below were reflected in the comments of multiple respondents.

Improving Service Quality: Information access

Improving Service Quality: Welcoming environments

Improving Service Quality: Staff Quality

Improving Service Quality: Access

Improving Service Quality: Choice

Comments or questions about the information on this page can be directed to the Office of Planning.