EXECUTIVE SUMMARY
NAMI – HENNEPIN
2016 LISTENING TOUR
During 2016, NAMI - Hennepin conducted our Second Annual “Listening Tour,” involving six Listening Sessions, in a variety of settings.
As was true in 2015, Listening Session participants expressed a fair amount of satisfaction with the services they had received, especially:
We also heard significant, and a broad range of, dissatisfaction, especially related to:
And we make several recommendations, including the following:
A more complete version of our 2016 LISTENING TOUR REPORT is below.
NAMI – HENNEPIN
2016 LISTENING TOUR
During 2016, NAMI - Hennepin conducted our Second Annual “Listening Tour,” involving six Listening Sessions, in a variety of settings.
As was true in 2015, Listening Session participants expressed a fair amount of satisfaction with the services they had received, especially:
- Mobile crisis teams,
- Inpatient hospital staff, NAMI Programs, especially Family-to-Family,
- County Case Managers,
- Community Support programs (CSPs),
- Supported Employment
We also heard significant, and a broad range of, dissatisfaction, especially related to:
- How ridiculously difficult it is to gain admission to a hospital when you need treatment,
- The need for even more education about mental illness, especially within minority communities,
- The need for a more user-friendly system, where services are easier to access and providers actually care, and
- The pitiful support, within the mental health system, for employment.
And we make several recommendations, including the following:
- Continue the Listening Tour in 2017,
- Promote greater awareness of programs that work,
- Advocate for more “user-friendly,” and more “family-friendly,” hospital admission systems, and
- Make the gainful employment of people with mental illness a priority.
A more complete version of our 2016 LISTENING TOUR REPORT is below.
Listening Tour Report 2016
During 2016, the Advocacy Committee of NAMI of Hennepin County, under the direction of the Board of Directors of NAMI-Hennepin, conducted our Second Annual “Listening Tour.” As was true of our first Listening Tour in 2015, the purpose was to solicit feedback from consumers and other stakeholders regarding satisfaction with our current mental health system, and what problems or gaps, if any, might exist. This report summarizes what we heard.
THE PROCESS:
As was true in 2015, the 2016 Listening Tour included six Listening Sessions, in a variety of settings. This year’s tour included three churches, one synagogue, one CSP, and, new this year, one high school. A couple of the sessions were sparsely attended (in one case because the sister of a member of the host-church had committed suicide that morning), but the other four sessions drew large and enthusiastic turnouts. In addition to the three core members of the Advocacy Committee, two additional NAMI-Hennepin Board Members participated in at least one listening session.
In most of the sessions, we experienced less “wariness” from participants, compared to 2015, about sharing intimate details of their interactions with the mental health system. This was strikingly true at Mpls South High School, where a group of at least 25 students gathered in an open space (in the school library), and spoke openly about their interactions with the mental health system. When members of the AdComm expressed surprise of the student’s willingness to speak so openly, the students proudly told us, “There’s no stigma related to mental illness here at South.”
FINDINGS:
Satisfaction. As was true in 2015, Listening Session participants expressed a fair amount of satisfaction with the services they had received/were receiving. Specifically, we heard satisfaction re:
Dissatisfaction: We also heard a significant amount, and a broad range, of dissatisfaction. Several themes emerged, complaints expressed over and over again by multiple participants in multiple sessions. Among these themes were:
It is ridiculously difficult to gain admission to a hospital when you need treatment. And if you do get admitted, they don’t keep you long enough to do you any good.
People love NAMI Education Programs like Family To Family, but families need even more education about mental illness.
Isolation is a huge problem.
Professionals don’t seem to care about the people they serve.
Obviously, stigma is a terrible thing. But the question, “Is the stigma of mental illness getting better or worse?” generated different responses, mostly (not totally) depending on the venue.
Too many barriers and restrictions. There were numerous complaints about the “nightmare” of trying to access helpful programs and services, even when they do exist.
In the end, we were struck by the following question from a care-giver, “When my husband had a heart attack, he got great care. HOW COME MENTAL HEALTH CARE IS SO BAD?”
RECOMMENDATIONS*:
* We (NAMI Hennepin) need to develop a plan of action for implementing these recommendations.
THE PROCESS:
As was true in 2015, the 2016 Listening Tour included six Listening Sessions, in a variety of settings. This year’s tour included three churches, one synagogue, one CSP, and, new this year, one high school. A couple of the sessions were sparsely attended (in one case because the sister of a member of the host-church had committed suicide that morning), but the other four sessions drew large and enthusiastic turnouts. In addition to the three core members of the Advocacy Committee, two additional NAMI-Hennepin Board Members participated in at least one listening session.
In most of the sessions, we experienced less “wariness” from participants, compared to 2015, about sharing intimate details of their interactions with the mental health system. This was strikingly true at Mpls South High School, where a group of at least 25 students gathered in an open space (in the school library), and spoke openly about their interactions with the mental health system. When members of the AdComm expressed surprise of the student’s willingness to speak so openly, the students proudly told us, “There’s no stigma related to mental illness here at South.”
FINDINGS:
Satisfaction. As was true in 2015, Listening Session participants expressed a fair amount of satisfaction with the services they had received/were receiving. Specifically, we heard satisfaction re:
- Mobile crisis teams.
- Inpatient staff (not admissions staff)
- Medications – the side-effects are troublesome, but not as bad as being stressed-out all the time.
- NAMI Programs, especially Family-to-Family
- Better services here than in other states
- Music Therapy programs
- County Case Managers
- Some Therapists
- Some school-based MH services
- Community Support programs (CSPs) – “It is much more comfortable to hang out with other folks who have mental illness; they understand you.”
- The police in Bloomington – “Much better at dealing with people having a mental health crisis than they used to be.”
- Supported Employment – “The best thing for your mental health.”
- even in a segregated setting – “less pressure, more security,”
- even part-time employment – “people don’t want to earn too much anyway,”
- even piece-rate work – “it beats not working.”
- Several folks reported total sustained recovery from their illness.
- One man gave credit to his medications.
- Two men gave credit to the supported employment programs they were enrolled in.
- One woman gave credit to her therapist.
- One woman reported that she had “aged out” of her illness.
- And several (not sure if this counts as satisfaction) insisted that they had achieved recovery by, primarily, discontinuing their meds and severing their ties to the mental health system – often replacing treatment with the support of their family or church.
Dissatisfaction: We also heard a significant amount, and a broad range, of dissatisfaction. Several themes emerged, complaints expressed over and over again by multiple participants in multiple sessions. Among these themes were:
It is ridiculously difficult to gain admission to a hospital when you need treatment. And if you do get admitted, they don’t keep you long enough to do you any good.
- One mother reported that she had tried six times, over thirteen months, to get her son admitted to a hospital.
- A wife reported that sometimes her husband’s depression gets so bad that she cannot care for him at home. But it is impossible to get him into the hospital.
- A third woman reported that her sister is often (and currently) homeless. Sister does street drugs, prostitutes, etc., all due to her mental illness, but the woman can’t get her sister into treatment and doesn’t know what to do.
- A male consumer reported, “You have to raise holy hell to get into the hospital these days; just saying you’re ill doesn’t work.”
- And “It is too easy to game the system. People don’t take their meds and become very ill, but when they see a doctor they suck it up for 5 minutes and claim they’re fine. The doctor doesn’t take the time to explore whether it’s really true.”
- There was general agreement that the admissions process was particularly painful.
- “Staff in the Admissions Dept. don’t seem to have any training in mental health, and waiting for 8 to 12 hours in the admission unit can be terrifying.”
- “You come in looking for help, and they treat you like a criminal.”
- It seems that there are never enough beds available. Sometimes, when the hospital staff finally understand that a person needs help, they ship them out of town to some far-away place that has an available bed.
- “And when you finally get hospitalized, all they do is change your meds and discharge you again – they don’t even wait to see if the new meds are working.”
- “I recently had a patient, a fifteen year-old girl, who was discharged from the hospital way before she was ready – without anywhere to go. A fifteen year-old girl! It was ridiculous.”
People love NAMI Education Programs like Family To Family, but families need even more education about mental illness.
- If you’re a minor, they discuss your problems with your parents, even when your parents are the problem.
- Especially within minority communities, families don’t understand mental illness and can be a real barrier to getting treatment.
- If you’re black, you’re not supposed to have mental health problems; your family won’t accept it.
- If you’re Somali, your family thinks it’s a spiritual problem, and all you have to do is go to mosque more often.
- “My family doesn’t understand my mental illness – not a clue.”
- “No one listens to the family, even though we know the patient best.”
Isolation is a huge problem.
- “I live alone. And when I get depressed, there often is nowhere to go for help. The CSPs are helpful when they’re open, but they’re only open a few hours a week. They’re rarely open when I need help.”
- “I wish I could live with other people. But not in a group home.”
- “There are hot-lines you can call, but talking to some stranger over the phone doesn’t help.”
Professionals don’t seem to care about the people they serve.
- “Psychiatrists don’t care about you; all they do is give you pills.”
- A woman reported that her therapist had told her that recovery was impossible.
- One of the several people agreeing with this premise was a provider. He felt that the increased emphasis on paperwork and billing destroys the compassion that leads people to enter the field in the first place.
- It is hard to get a job and hard hold a job, when you have mental illness, and the system offers little help.
- Employers won’t hire you if they know you have mental illness, and if they find out, they fire you.
- If you have the flu or something, they’ll give you a sick-day. But you can’t call in and say, “I can’t work today because of my depression or my delusions.”
- Charaka is great. But the jobs they post on the “job-board” are always dead-end jobs, and no one helps you find anything better.
- There was total agreement among participants at Charaka (the only CSP on this year’s tour) that no one can ever earn more than the SGA limit, currently about $1040/month. Because then you would lose your “disability,” and that would be awful! Several people reported that they work part-time, and would like to work more, but they can’t afford to. (While no tour participant challenged this assumption, the Listening Tour Committee considers this assumption false, and part of what is wrong with our system.)
Obviously, stigma is a terrible thing. But the question, “Is the stigma of mental illness getting better or worse?” generated different responses, mostly (not totally) depending on the venue.
- At Charaka, there was general agreement that stigma was getting worse.
- At a church, a woman who receives both MH and physical health care at the same clinic reported that a (non-psych) doc recently refused to examine her upon learning that she was also a psych-patient – admitting that she was afraid of people with MI.
- But our high school students insisted that there was zero stigma around mental illness in their school, and minimal stigma among (white) members of their community.
Too many barriers and restrictions. There were numerous complaints about the “nightmare” of trying to access helpful programs and services, even when they do exist.
- Even MH professionals have a difficult time making the system work for the people they are trying to help. “Consumers and (most) parents of consumers don’t have a chance.”
In the end, we were struck by the following question from a care-giver, “When my husband had a heart attack, he got great care. HOW COME MENTAL HEALTH CARE IS SO BAD?”
RECOMMENDATIONS*:
- We should continue the Listening Tour in 2017, visiting new churches, new CSPs, and exploring other new venues (this year’s visit to a high school was eye-opening).
- We need to promote greater public awareness of the fact that many programs and services do work, and make a huge difference in the quality of life of the people who receive them.
- We need to advocate for more “user-friendly,” and more “family-friendly,” hospital admission and discharge systems.
- Hospital admissions and discharge policies and procedures need to recognize the human consequences that they create;
- In-patient staff were, in general, positively reviewed; but the skills demonstrated by in-patient staff need to be exported to admissions staff;
- Artificial financial restrictions cannot be allowed to override clinical decision-making;
- And we need more beds in Hennepin County.
- We need to grow the NAMI emphasis on educating people about mental illness.
- Expanding it to even more families;
- Especially to families of color;
- And working with hospitals and other service systems to understand the humanity of the people they serve.
- We need to address the isolating effect of mental illness.
- We need more viable, flexible, long-term alternatives to living alone;
- We need to greatly expand the hours of CSPs and similar service-models.
- We need to make the gainful employment of people with mental illness a priority.
- A real priority, not just lip-service;
- Not just in Hennepin County;
- Both “integrated” and “non- integrated” employment;
- We need to challenge the false-ceiling which causes a “I have to stay on disability” mentality;
- And create an understanding that real “recovery” includes improved socio-economic status.
- Lastly, as encouraging as it was to hear high school students say that stigma is no longer a problem, we should recognize that we have a long fight still ahead to make that a reality.
* We (NAMI Hennepin) need to develop a plan of action for implementing these recommendations.
Listening Tour Report 2015
In the spring of 2015, the Board of Directors of NAMI-Hennepin authorized the Advocacy Committee to conduct NAMI-Hennepin’s first-ever Listening Tour. The goal of the 2015 Listening Tour was to solicit feedback from consumers and other stakeholders regarding satisfaction with our current mental health system, what the problems or gaps, if any, might be. We mostly just asked, “Tell us about your experiences with the mental health system,” and “What would you like to see changed?”
THE PROCESS:
All five members of the Advocacy Committee participated in at least one listening session, and most of us more than one. We made an effort to solicit input from a diverse pool of respondents by holding three of our six listening sessions at CSPs, two at churches, and one at a community center, four in the City and two in the suburbs. But we do not pretend that our sample was comprehensive or scientifically random.
Several of the sessions were well-attended, but two of the sessions attracted only one participant each. Participants exhibited some “wariness,” especially at first – not clear what we were up to, despite our efforts to explain this.
And even when they understood the purpose of a “listening session,” there was confusion regarding who we were – many participants confusing NAMI-Hennepin with Hennepin County, and thinking that we were representatives of the “mental health system.” At times, we ourselves contributed to the confusion by attempting to defend, explain or make excuses for the system.
But despite the initial wariness and frequent confusion, we were impressed, touched even, by the level of appreciation, expressed by many, that we had come to listen, to hear their opinions and concerns. Although, obviously, there are occasional, formal opportunities for limited input into elements of the mental health system. It felt as though our venturing into the community to solicit opinions with open-ended questions regarding the over-all system was a novelty.
FINDINGS:
Satisfaction: We were mildly surprised by the level of satisfaction expressed regarding individual experiences with the mental health system. Overall, we probably heard more satisfaction than dissatisfaction. The participants had lots of positive things to say about their experiences, particularly about specific services they were receiving or had received. We heard compliments about:
• Case management
• CSPs
• ACT Teams
• Metro Mobility
• Supported Employment
• MA-EPD
• PCAs
• M.A.
• Retro-eligibility for M.A.
• NAMI – Connections
• And several specific service providers.
Dissatisfaction: We also heard a significant amount of dissatisfaction. Naturally, this dissatisfaction covered a broad range of issues, but several themes emerged, complaints expressed over and over again by multiple participants in multiple sessions. Among these themes were:
* Confusion: The mental health system is confusing, inconsistent, even mysterious. You get different answers from different people, there is no one place you can go to get reliable information about all services available, it is hard to find out if the services you need exist, where they exist, and if you are eligible. And just when you think you have it figured out, it changes. If trained professionals can’t keep it straight, how is a consumer supposed to navigate the system?
* Limitations: The best services, like case-management, Metro-Mobility and supported employment, are either time-limited, or means-tested, or have impossible waiting lists. You wait forever to find a service that fits your particular need, and then about the time it starts to work they say, “Times up,” or you finally start to rebuild your life and they say, “You now have too much income.” Either way, you get booted off. It’s as though the system is designed to prevent “recovery,” rather than promote it.
* Bureaucratic Disfunction: You have to constantly prove your eligibility for this or that. So you send your paperwork in monthly or quarterly or whatever to M.A, to Social Security, to subsidized housing, etc – and they lose it. Not just once, but over and over again! You know you sent it in, to the right place, on time, etc, but they act like it’s your fault. And you have to fix it. The system makes you “crazy.”
* “Difficult” consumers: None of the participants spoke directly about this, but we encountered a few consumers who were highly dissatisfied, and had been for a very long time. Every one of these folks seemed to be “difficult” in some way. It was easy to imagine these folks getting into a series of conflicts with the professionals who run programs, and getting cut off from services because of this conflict. But at the end of the day, these are people with serious mental health issues, whose needs are not being met.
* Stigma: There is less stigma than there used to be, but it’s still a big problem. You can’t get a job, you can’t rent an apartment, you can’t do stuff other people take for granted, if folks know you have mental illness.
RECOMMENDATIONS:
We should do this again, probably next year. And if and when we do it again, we should:
Try to broaden the range of participants even more;
Publicize more effectively so as to use our time more efficiently;
Think through our role as “listeners.”
And the confusion, which is clearly real, stems in part from a decentralized system, with a great variety of funding streams and an even greater variety of service providers. But this decentralization also accounts for much of the success. A centralized system with only one funding stream and only one service provider would be less confusing – but surely less effective and less responsive to emerging needs.
The concept of a “user-friendly” mental health system also relates to the “difficult” consumer problem. Maybe “difficult” is part of mental illness, or maybe 5% of any customer base is “difficult;” but we need a system that leaves out as few people as possible. In the long run, our society cannot afford a mental health system that denies services to people just because they are “difficult.”
A “user-friendly” system would also go a long way toward minimizing the need for involuntary treatment.
Lastly, stigma is hardly a new problem, and we should recognize that we have a long fight still ahead, but – We have to keep fighting stigma.
THE PROCESS:
All five members of the Advocacy Committee participated in at least one listening session, and most of us more than one. We made an effort to solicit input from a diverse pool of respondents by holding three of our six listening sessions at CSPs, two at churches, and one at a community center, four in the City and two in the suburbs. But we do not pretend that our sample was comprehensive or scientifically random.
Several of the sessions were well-attended, but two of the sessions attracted only one participant each. Participants exhibited some “wariness,” especially at first – not clear what we were up to, despite our efforts to explain this.
And even when they understood the purpose of a “listening session,” there was confusion regarding who we were – many participants confusing NAMI-Hennepin with Hennepin County, and thinking that we were representatives of the “mental health system.” At times, we ourselves contributed to the confusion by attempting to defend, explain or make excuses for the system.
But despite the initial wariness and frequent confusion, we were impressed, touched even, by the level of appreciation, expressed by many, that we had come to listen, to hear their opinions and concerns. Although, obviously, there are occasional, formal opportunities for limited input into elements of the mental health system. It felt as though our venturing into the community to solicit opinions with open-ended questions regarding the over-all system was a novelty.
FINDINGS:
Satisfaction: We were mildly surprised by the level of satisfaction expressed regarding individual experiences with the mental health system. Overall, we probably heard more satisfaction than dissatisfaction. The participants had lots of positive things to say about their experiences, particularly about specific services they were receiving or had received. We heard compliments about:
• Case management
• CSPs
• ACT Teams
• Metro Mobility
• Supported Employment
• MA-EPD
• PCAs
• M.A.
• Retro-eligibility for M.A.
• NAMI – Connections
• And several specific service providers.
Dissatisfaction: We also heard a significant amount of dissatisfaction. Naturally, this dissatisfaction covered a broad range of issues, but several themes emerged, complaints expressed over and over again by multiple participants in multiple sessions. Among these themes were:
* Confusion: The mental health system is confusing, inconsistent, even mysterious. You get different answers from different people, there is no one place you can go to get reliable information about all services available, it is hard to find out if the services you need exist, where they exist, and if you are eligible. And just when you think you have it figured out, it changes. If trained professionals can’t keep it straight, how is a consumer supposed to navigate the system?
* Limitations: The best services, like case-management, Metro-Mobility and supported employment, are either time-limited, or means-tested, or have impossible waiting lists. You wait forever to find a service that fits your particular need, and then about the time it starts to work they say, “Times up,” or you finally start to rebuild your life and they say, “You now have too much income.” Either way, you get booted off. It’s as though the system is designed to prevent “recovery,” rather than promote it.
* Bureaucratic Disfunction: You have to constantly prove your eligibility for this or that. So you send your paperwork in monthly or quarterly or whatever to M.A, to Social Security, to subsidized housing, etc – and they lose it. Not just once, but over and over again! You know you sent it in, to the right place, on time, etc, but they act like it’s your fault. And you have to fix it. The system makes you “crazy.”
* “Difficult” consumers: None of the participants spoke directly about this, but we encountered a few consumers who were highly dissatisfied, and had been for a very long time. Every one of these folks seemed to be “difficult” in some way. It was easy to imagine these folks getting into a series of conflicts with the professionals who run programs, and getting cut off from services because of this conflict. But at the end of the day, these are people with serious mental health issues, whose needs are not being met.
* Stigma: There is less stigma than there used to be, but it’s still a big problem. You can’t get a job, you can’t rent an apartment, you can’t do stuff other people take for granted, if folks know you have mental illness.
RECOMMENDATIONS:
We should do this again, probably next year. And if and when we do it again, we should:
Try to broaden the range of participants even more;
Publicize more effectively so as to use our time more efficiently;
Think through our role as “listeners.”
- Aside from the listening sessions, We need to improve our name and identity recognition so that more people have heard of NAMI – Hennepin and understand who and what we are.
- We need to promote greater public awareness of the fact that many programs and services do work, and make a huge difference in the quality of life of the people who receive them.
- In the long run, We need to advocate for a more “user-friendly” mental health system, one in which people who need a service can find that service with minimum hassle.
And the confusion, which is clearly real, stems in part from a decentralized system, with a great variety of funding streams and an even greater variety of service providers. But this decentralization also accounts for much of the success. A centralized system with only one funding stream and only one service provider would be less confusing – but surely less effective and less responsive to emerging needs.
The concept of a “user-friendly” mental health system also relates to the “difficult” consumer problem. Maybe “difficult” is part of mental illness, or maybe 5% of any customer base is “difficult;” but we need a system that leaves out as few people as possible. In the long run, our society cannot afford a mental health system that denies services to people just because they are “difficult.”
A “user-friendly” system would also go a long way toward minimizing the need for involuntary treatment.
- We need to advocate for a recovery-based system that actually produces recovery.
- One with services that last as long as the individual truly needs the service, not governed by artificial time-limits, or unrealistic income/asset limits.
- Acknowledge that real “recovery” includes improved socio-economic status.
- We need to advocate for better quality “customer service” from mental health programs, especially public entitlement programs.
- It appears as though public entitlement programs are often disrespectful of the people they serve, operating as though the time and convenience of their “customers,” and even the functionality of their services, is insignificant.
Lastly, stigma is hardly a new problem, and we should recognize that we have a long fight still ahead, but – We have to keep fighting stigma.