NAMI HENNEPIN PROJECT TO COLLECT INFORMATION
Regarding the use of
PEER SUPPORT & CERTIFIED PEER SPECIALISTS
in HENNEPIN COUNTY
(Report adopted March 12, 2018)
Regarding the use of
PEER SUPPORT & CERTIFIED PEER SPECIALISTS
in HENNEPIN COUNTY
(Report adopted March 12, 2018)
OVERVIEW
NAMI of Hennepin County is an affiliate of NAMI (national) and NAMI of Minnesota. We favor the use of Peer Support Services in general, and Certified Peer Specialists specifically, in the delivery of community mental health services. Our Position Paper on Peer Support is available on our website at namihennepin.org.
Based upon the fundamental principles of recovery, Peer Support Services are specialized therapeutic interactions conducted by self-identified current or former consumers of behavioral health services who are trained (and sometimes Certified) to offer support and assistance in helping others in their recovery and community-integration process. Because of their lived experience, such persons have expertise that no professional training can ever replicate.
Peer support is intended to inspire hope in individuals that recovery is not only possible, but probable. The service is designed to promote empowerment, self-determination, understanding, coping skills, and resiliency through mentoring and service coordination supports that allow individuals with severe and persistent mental illness and co-occurring disorders to achieve personal wellness and cope with the stressors and barriers encountered when recovering from their disabilities. (See Addendum 1 for additional detail of Peer Support Services.)
We knew that since 2009, the State of Minnesota has sponsored training and certification of consumers as “Certified Peer Specialists” (some 500 Minnesotans have been certified), and we wondered how many of these folks were working as Peer Specialists in Hennepin County mental health programs. We were surprised to learn that no one at the State of Minnesota, nor anyone associated with this training, tracks how many of these Certified Peer Specialists ever find, much less retain, such employment. And, asking around, we have become concerned that peer support and Certified Peer Specialists were not, in 2017, being utilized, in Hennepin County, to the extent that we had hoped.
To that end, we conducted, during 2017, two surveys, one survey of Hennepin County community mental health providers, and a separate (but similar) survey of consumers working in community mental health support, to identify the barriers that may have limited the utilization of peer support and Certified Peer Specialists, and to explore strategies which may help to overcome said barriers.
CONSUMER SURVEY FINDINGS
Every consumer we interviewed was either currently employed as a Peer Specialist or had previously been employed as a Peer Specialist, most (not all) were “certified”, and all had been employed for at least 6 months. (We were interested in interviewing folks who had been certified as a Peer Specialist but, for whatever reason, had never been employed as a Peer Specialist – but we were unable to recruit such persons for our survey.)
Satisfaction ranged from extremely high (“my dream job”) to mixed (“not exactly satisfied/ not exactly dissatisfied”). The most commonly mentioned source of satisfaction was the rewarding nature of the work and the self-esteem that the Peer Specialists gained from it. Others mentioned supportive supervision, supportive co-workers, and opportunities for “professional development.” Others mentioned specific assignments, working conditions, flexibility, etc.
A few individuals expressed dissatisfaction with a variety of specific assignments, and two respondents said that their work was easy when their personal mental health was good, but stressful during times when their personal mental health was not so good.
Although most respondents expressed satisfaction with the way they felt they were treated by their non-consumer co-workers, three respondents expressed some dissatisfaction in this area. One of these respondents felt “stigmatized” by references to them as “our Peer Specialist,” and another felt uncertain about what they were allowed to say and do compared to the “professional” staff.
Of those respondents who had completed the State-sponsored training resulting in certification, most expressed satisfaction with this training. Comments included “I learned skills I use every day now,” and “It gave me the confidence I needed when I started this job.”
Two respondents were critical of aspects of the training. One felt that her particular cohort of trainees included several people who were completely “inappropriate” to be taking the training (others, with less bitterness, agreed). Another felt that the information promoting the training greatly exaggerated Peer Specialist employment opportunities. (Though this person had finally found a Peer Specialist position he liked) he insisted he would never recommend the training to others because “there are no jobs for Peer Specialists.”
Approximately half of respondents were working full-time (at least 32 hrs/wk) and were satisfied with that. Approximately half of respondents were working part-time (less than 32 hrs/wk). Most of the part-timers were satisfied with that (some did not want to work more for fear of losing “disability”), but two respondents wanted/needed more hours and were frustrated that they could not get them.
All respondents regarded working as a Peer Specialist as a “career,” but approximately one-third felt frustrated by the lack of opportunity (they perceived) for advancement.
PROVIDER SURVEY FINDINGS (The Haves & the Have Nots)
The findings of our survey of Mental Health Providers in Hennepin Co. with respect to the utilization of Peer Specialists in the delivery of community mental health services are a tale of “Haves” and “Have Nots.”
That is, approximately one-third of the providers we were able to survey have utilized Peer Specialists, and their experience has been almost entirely positive. These providers described the Peer Specialists in their employ as passionate, hard-working, reliable, role-models, who can relate to and establish rapport with consumers better than traditionally-trained mental health staff. These providers are enthusiastic about continuing to employ Peer Specialists for the foreseeable future.
Among the “haves,” responses to our questions re the length of employment, the intensity of employment, and provider’s thoughts regarding the State of MN sponsored Peer Specialist training, were mixed. Some of the haves have utilized Peer Specialists for years; others only recently. Some primarily utilize Peer Specialists in a full-time capacity; others primarily in a part-time capacity. (One provider expressed frustration at the difficulty of finding Certified Peer Specialists interested in full-time employment.) A majority preferred to recruit already Certified Peer Specialists (some didn’t care), and some were complimentary about the State-sponsored training, and others critical.
On the other hand, approximately two-thirds of the providers who responded* to our survey have not utilized Peer Specialists. In general, these providers seemed less informed about the utilization of Peer Specialists, and unlikely to employ Peer Specialists in the foreseeable future. Comments included: “They (Peer Specialists) would not be appropriate for the type of service we provide;” and “Can’t bill their time under our current contract;” and a concern related to the “literacy” of the consumers served.
* Many of the “have not” providers did not complete the entire survey – presumably because they did not find it relevant to their organization.
Most of the “haves” provided ACT, CSP and “Lodge-Model” services. And although there were examples of Peer Specialists utilized in the provision of ARMHS, IRTS & Case Management services, providers primarily providing the latter services tended to be “have nots.”
FROM THESE FINDINGS WE DRAW THE FOLLOWING CONCLUSIONS:
BASED ON THESE CONCLUSIONS WE MAKE THE FOLLOWING RECOMMENDATIONS:
ADDENDUM 1
Peer support is designed on the principles of consumer choice and the active involvement of persons in their own recovery process. Peer support practice is guided by the belief that people with disabilities need opportunities to identify and choose for themselves their desired roles with regard to living, learning, working and social interaction in the community. Peer support services include:
NAMI of Hennepin County is an affiliate of NAMI (national) and NAMI of Minnesota. We favor the use of Peer Support Services in general, and Certified Peer Specialists specifically, in the delivery of community mental health services. Our Position Paper on Peer Support is available on our website at namihennepin.org.
Based upon the fundamental principles of recovery, Peer Support Services are specialized therapeutic interactions conducted by self-identified current or former consumers of behavioral health services who are trained (and sometimes Certified) to offer support and assistance in helping others in their recovery and community-integration process. Because of their lived experience, such persons have expertise that no professional training can ever replicate.
Peer support is intended to inspire hope in individuals that recovery is not only possible, but probable. The service is designed to promote empowerment, self-determination, understanding, coping skills, and resiliency through mentoring and service coordination supports that allow individuals with severe and persistent mental illness and co-occurring disorders to achieve personal wellness and cope with the stressors and barriers encountered when recovering from their disabilities. (See Addendum 1 for additional detail of Peer Support Services.)
We knew that since 2009, the State of Minnesota has sponsored training and certification of consumers as “Certified Peer Specialists” (some 500 Minnesotans have been certified), and we wondered how many of these folks were working as Peer Specialists in Hennepin County mental health programs. We were surprised to learn that no one at the State of Minnesota, nor anyone associated with this training, tracks how many of these Certified Peer Specialists ever find, much less retain, such employment. And, asking around, we have become concerned that peer support and Certified Peer Specialists were not, in 2017, being utilized, in Hennepin County, to the extent that we had hoped.
To that end, we conducted, during 2017, two surveys, one survey of Hennepin County community mental health providers, and a separate (but similar) survey of consumers working in community mental health support, to identify the barriers that may have limited the utilization of peer support and Certified Peer Specialists, and to explore strategies which may help to overcome said barriers.
CONSUMER SURVEY FINDINGS
Every consumer we interviewed was either currently employed as a Peer Specialist or had previously been employed as a Peer Specialist, most (not all) were “certified”, and all had been employed for at least 6 months. (We were interested in interviewing folks who had been certified as a Peer Specialist but, for whatever reason, had never been employed as a Peer Specialist – but we were unable to recruit such persons for our survey.)
Satisfaction ranged from extremely high (“my dream job”) to mixed (“not exactly satisfied/ not exactly dissatisfied”). The most commonly mentioned source of satisfaction was the rewarding nature of the work and the self-esteem that the Peer Specialists gained from it. Others mentioned supportive supervision, supportive co-workers, and opportunities for “professional development.” Others mentioned specific assignments, working conditions, flexibility, etc.
A few individuals expressed dissatisfaction with a variety of specific assignments, and two respondents said that their work was easy when their personal mental health was good, but stressful during times when their personal mental health was not so good.
Although most respondents expressed satisfaction with the way they felt they were treated by their non-consumer co-workers, three respondents expressed some dissatisfaction in this area. One of these respondents felt “stigmatized” by references to them as “our Peer Specialist,” and another felt uncertain about what they were allowed to say and do compared to the “professional” staff.
Of those respondents who had completed the State-sponsored training resulting in certification, most expressed satisfaction with this training. Comments included “I learned skills I use every day now,” and “It gave me the confidence I needed when I started this job.”
Two respondents were critical of aspects of the training. One felt that her particular cohort of trainees included several people who were completely “inappropriate” to be taking the training (others, with less bitterness, agreed). Another felt that the information promoting the training greatly exaggerated Peer Specialist employment opportunities. (Though this person had finally found a Peer Specialist position he liked) he insisted he would never recommend the training to others because “there are no jobs for Peer Specialists.”
Approximately half of respondents were working full-time (at least 32 hrs/wk) and were satisfied with that. Approximately half of respondents were working part-time (less than 32 hrs/wk). Most of the part-timers were satisfied with that (some did not want to work more for fear of losing “disability”), but two respondents wanted/needed more hours and were frustrated that they could not get them.
All respondents regarded working as a Peer Specialist as a “career,” but approximately one-third felt frustrated by the lack of opportunity (they perceived) for advancement.
PROVIDER SURVEY FINDINGS (The Haves & the Have Nots)
The findings of our survey of Mental Health Providers in Hennepin Co. with respect to the utilization of Peer Specialists in the delivery of community mental health services are a tale of “Haves” and “Have Nots.”
That is, approximately one-third of the providers we were able to survey have utilized Peer Specialists, and their experience has been almost entirely positive. These providers described the Peer Specialists in their employ as passionate, hard-working, reliable, role-models, who can relate to and establish rapport with consumers better than traditionally-trained mental health staff. These providers are enthusiastic about continuing to employ Peer Specialists for the foreseeable future.
Among the “haves,” responses to our questions re the length of employment, the intensity of employment, and provider’s thoughts regarding the State of MN sponsored Peer Specialist training, were mixed. Some of the haves have utilized Peer Specialists for years; others only recently. Some primarily utilize Peer Specialists in a full-time capacity; others primarily in a part-time capacity. (One provider expressed frustration at the difficulty of finding Certified Peer Specialists interested in full-time employment.) A majority preferred to recruit already Certified Peer Specialists (some didn’t care), and some were complimentary about the State-sponsored training, and others critical.
On the other hand, approximately two-thirds of the providers who responded* to our survey have not utilized Peer Specialists. In general, these providers seemed less informed about the utilization of Peer Specialists, and unlikely to employ Peer Specialists in the foreseeable future. Comments included: “They (Peer Specialists) would not be appropriate for the type of service we provide;” and “Can’t bill their time under our current contract;” and a concern related to the “literacy” of the consumers served.
* Many of the “have not” providers did not complete the entire survey – presumably because they did not find it relevant to their organization.
Most of the “haves” provided ACT, CSP and “Lodge-Model” services. And although there were examples of Peer Specialists utilized in the provision of ARMHS, IRTS & Case Management services, providers primarily providing the latter services tended to be “have nots.”
FROM THESE FINDINGS WE DRAW THE FOLLOWING CONCLUSIONS:
- The utilization of Peer Specialists in the delivery of community mental health services, particularly in ACT, CSP, IRTS and “Lodge-Model” programs, has been a resounding success, from the perspective of both the Peer Specialists themselves, and the agencies employing them.
- The utilization of Peer Specialists in the delivery of other services, such as ARMHS & Case Management, has not been attempted (at least in Hennepin Co.) often enough for us to draw any conclusions re its effectiveness.
- Within the framework of “managed care” (CSP, IRTS and “Lodge-Model” programs are typically not funded through managed care systems), ACT stands out as a service-type in which Peer Specialists are a reimbursable expense. The lack of a means to obtain reimbursement for the expense of utilizing Peer Specialists in ARMHS & Case Management services seems to have prevented most providers from even experimenting with Peer Specialists.
- And even within the provision of ACT, CSP, IRTS and “Lodge-Model” programs, Peer Specialists seem to be under-utilized (in Hennepin Co.).
BASED ON THESE CONCLUSIONS WE MAKE THE FOLLOWING RECOMMENDATIONS:
- The State of Minnesota and Hennepin County should consider policy changes that would encourage, rather than discourage, the use of Peer Specialists, in all types of community mental health programming.
- The State of Minnesota should continue to sponsor Peer Specialist Training and Certification.
- Assuming Recommendation #2, this training should be improved in the following ways:
- Ensure that the training/certification is designed and conducted as skill-training for “real jobs.”
- Clarify, to everyone (trainers, trainees and potential trainees, potential employers) that the training/certification is designed and conducted as skill-training for “real jobs.”
- And track (this seems basic to us) the numbers, percentages, etc., of Certified Peer Specialists obtaining and maintaining employment.
- Consistent with Recommendation #3, trainers/organizations contracted to provide Peer Specialist training should engage in on-going dialog with the potential employers of these Peer Specialists, regarding the effectiveness of the training (as we understand to be common for training in other fields).
- Hennepin Co. should partner with the State of Minnesota in these endeavors to ensure that Hennepin Co. consumers and Hennepin Co. mental health providers are appropriately represented going forward.
ADDENDUM 1
Peer support is designed on the principles of consumer choice and the active involvement of persons in their own recovery process. Peer support practice is guided by the belief that people with disabilities need opportunities to identify and choose for themselves their desired roles with regard to living, learning, working and social interaction in the community. Peer support services include:
- Modeling of effective coping techniques and self-help strategies based on the specialist's own recovery experience;
- Assistance in articulating goals for recovery;
- Learning and practicing new skills, including Individual advocacy skills;
- Development of natural supports;
- Support of employment, education, or other meaningful activity of the individual's choosing;
- Crisis management support.
- Outreach worker: Identifies and engages hard-to-reach individuals; offers living proof of transformative power of recovery and makes recovery attractive.
- Motivator: Exhibits faith in client’s capacity for change; encourages and celebrates their recovery achievements and mobilizes internal and external recovery.
- Resource guide: Encourages the client’s self-advocacy and economic self-sufficiency by providing information about available services.
- Ally and confidant: Genuinely cares and listens to the client can be trusted with confidences and can identify areas for potential growth.
- Truth-teller: Provides feedback on the recovery progress. Identifies areas which have presented or may present roadblocks to continued recovery.
- Role model and mentor: Offers their life as living proof of the transformative power of recovery and provides stage-appropriate recovery education.
- Planner: Facilitates the transition from a professionally directed treatment plan to a client-developed and directed personal recovery plan. Assists in structuring daily activities around this plan.
- Problem solver: Helps resolve personal and environmental obstacles to recovery.
- Monitor or companion: When the client will be best served with regular, around the clock companion, or attendance for a set number of hours per day, including out of town, out of state, out of country travel.
- Tour guide: Introduces newcomers into the culture of recovery; provides an orientation to recovery roles, rules, rituals, language, etiquette; and opens doors for opportunities for community participation, and provides a social bridge from the culture of mental illness to the culture of recovery.
- Educator: Provides a client with normative information about the pathways to and stages of long-term recovery.
- Community organizer: Helps develop and expand recovery support resources, enhances cooperative relationships between professional service organizations and local recovery support groups; cultivates opportunities for people in recovery to participate in volunteerism and performs other acts of service to the community.
- Lifestyle consultant/coach: Supports the client through challenges arising from everyday activities. For some, this is done through several one-on-one sessions each week, while some clients prefer daily telephone contact. Assists individuals and their families to develop sobriety-based rituals of daily living; and encourages activities across religious, spiritual, and secular frameworks that will enhance life meaning and purpose.
- Progress monitor: Helping the client assess treatment gains and progress toward recovery.
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.