CMH/API 2000
Project
Outcome Notes
Meetings with Consumers and Family Members
Participants: Robyn Henry and Jill Ramsey (telephone), Pat Kouris, Lori Campbell; Beth Lacrosse, President, NAMI AK; Lola Reed, NAMI Anchorage; Cindy Drinkwater, Disability Law Center, Katsumi Kenastin and Jim Gottstein, Computer Connection; one other consumer and two other family members.
DMHDD ARO staff: John Bajowski
CMH/API 2000 Project Evaluation Team: Karen Fenaughty, ACSES/UAA
CMH/API 2000 Project Staff: Loren Jones, Director; Kathy Carssow, Manager
Participants: Katsumi Kanastin and Jim Gottstein, Computer Connection; Jill Ramsey, Quyanna House; Pat Kouris and Beth LaCrosse, NAMI AK; 5 other consumers.
DMHDD ARO staff: John Bajowski
CMH/API 2000 Project Evaluation Team: Lori Namyniuk, ACSES/UAA
CMH/API 2000 Project Staff: Loren Jones, Director; Kathy Carssow, Manager
Participants: 4 SCC services consumers
SCC staff: 3 case-managers
DMHDD ARO staff: John Bajowski
CMH/API 2000 Project Evaluation Team: Lori Namyniuk, ACSES/UAA
CMH/API 2000 Project Staff: Kathy Carssow, Manager
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Reviewers comments from other meeting participants on this outcome summary, are available at the end of this Report. |
Project staff sent a report and the discussion draft request for grant proposals, RFGP, to 14 consumer organizations and individuals with letters inviting them and their members to a meeting at NAMI Alaska offices to discuss the proposal for a new community mental health program. The RFGP is for a modified PACT-model program. As the accompanying report explained, the intent of the proposed program is to reduce the number of and average inpatient days of people spending 30 days or more receiving API acute care services over the course of a year.
The letter and enclosures were also posted on the project web site. Robyn Henry of NAMI Alaska circulated a flyer via e-mail asking consumers and family members to attend the meeting to discuss “what helps and what hurts when a person is in a mental health crisis.”
Over the ensuing two weeks the Mental Health Consumers Web posted the NAMI announcement, the letter to consumers and family members from project staff, the report to consumers, and the RFGP. The Computer Connection also posted an opinion piece by Jim Gottstein on the web site with several supporting articles critical of the PACT model, especially with regard to it being used elsewhere as a tool for coercion and involuntary outpatient commitment
In addition to the meeting at NAMI Alaska, staff met with people at Computer Connection and at Southcentral Counseling Center. These meetings were announced to consumers separately by these organizations.
Staff began all three meetings with a ten-minute presentation on the status of the CMH/API 2000 project, with emphasis on acute care inpatient demand, ending with a slide posing the following questions for group discussion: 1) What is most helpful from day to day for people with serious mental illness? …for staying out of crisis? …for not needing to go to API? 2) What is most helpful for people when they are in crisis?
Following is a summary of the opinions and suggestions voiced by consumers and family members at the three meetings. The majority of the discussions did not address the RFGP per se, but many of the suggestions and comments are relevant to developing a new community-based program targeted at the highest users of acute inpatient care. The three lengthy and lively discussions touched on many other topics important to Anchorage consumers and they are included in this summary also. The opinions and viewpoints reflected here are those expressed by the participating consumers as interpreted and summarized by project staff.
“There are steps you go down leading to the hospital and steps you go up leading to recovery.” It is important for the consumer to recognize those steps and for providers to respond to the consumer’s self awareness. This theme ran persistently throughout the discussions: there needs to be something between no response and crisis response for when a person is beginning to feel unstable. People with mental illness are often able to recognize when they are going into relapse. They could avoid full relapse by being taken seriously and assisted quickly. This requires that when they report that they are at risk, that they are provided support, as opposed to being put on a waiting list or instructed to call their case manager the next day.
· At the same time, the response needs to be appropriate to the level of need. When a one-on-one talk in the person’s home is all that is needed to help him or her to stabilize and to remain in their home, but the only alternative to receiving no help is to be handcuffed and transported by police to API, this event alone can escalate the individual into serious crisis and constitute a trauma or injury to the self that threatens the individual’s long term mental health recovery. There needs to be something between being alone with frightening early warnings of psychosis and being taken away in handcuffs and hospitalized by strangers.
· Consumers report that calling the crisis line leads to a quick assessment by the professional of whether or not they need crisis care and termination of the call if they do not so that the line is free for someone in greater need. When a consumer calls emergency services on evenings, holidays or weekends because they are feeling at risk and feel they need support, but are sounding better than they feel, consumers report that the crisis line personnel encourage or persuade them to wait to talk to their case worker, “who is more familiar with you,” the next day. For some, calling the crisis line and talking on the phone with someone who is trying to efficiently determine whether they are in need of crisis intervention or not can be frustrating and exacerbate the relapse. Consumers report that it is most helpful when they are given the time to talk with someone at length with the alternative of talking with someone in person. By talking through their situation, being accepted and understood, and problem solving they can effectively de-escalate a relapse and contribute to their progress toward recovery.
· Some consumers attending the sessions report that when they meet with the mobile team for an assessment, they feel it too often leads to being admitted to API when they believe that having someone to talk with them for a longer period of time would have been enough to avoid admission and a several weeks stay. Consumers pointed out that the isolation from natural supports, the regimentation, depersonalization, disruption of life and stigma of the admission is not “therapeutic” and can worsen their relapse and thwart their progress toward recovery. Although there are some differences in who people believe can best deliver a “warm response,” there was general agreement that having someone to talk to when needed would decrease the need for hospitalization.
· For some, having someone they know who is reliable and trustworthy to call, who accepts the consumer, respects his or her self report of being at risk, and who is responsive is critical to assisting the consumer to divert crisis and to mitigate the damage when a full relapse occurs. For others, a consumer-run response service would fill the need with an 800 number backed by e-mail allowing anyone in the state access to a “warm” line 24 hours a day, seven days a week that can turn into a “hot” line when needed. Ketchikan is an example of a community that has a 24-hour “warm” line.
· In either case consumers voiced the desire to have access to someone around the clock who will listen to them and trust that they are able to recognize their own relapse indicators and provide the assistance they need to avoid crisis. Sometimes the person needs to be an accessible professional trained in providing psychiatric care, e.g. psychiatrist or a psychiatric nurse. At other times a masters-level case manager or other staff member is needed and at other times a non-professional is sufficient. It would be best to have flexibility. The person responding needs to ask the individual what they want and need, because everyone is not the same. Often times the person is most in need of someone to just listen without making judgements in order to de-escalate.
· The “warm response” needs to be accessible during regular office hours because consumers believe there is no alternative right now for people who are not receiving services or whose case manager is unavailable. Due to case manager overload, the “squeaky wheel” usually gets the attention, so it is difficult to get help early enough to avoid crisis. If a person is not on Medicaid and is unable to pay for care then they have no support for maintaining stability. It also needs to be available when offices are closed, evenings, weekends and holidays.
· Consumers supported the concept of having a plan in place for alerting the consumer, providers, and the consumer’s natural support system to the signs of relapse and what the consumer wants to do and wants others to do to avert a crisis and to respond to a crisis. They also would like to have information about their individual rights and have strategies in place to protect them in times of crisis.
Consumers shared what has worked for them on an ongoing basis to remain mentally healthy and what should be part of a holistic plan for recovery supported by the service providers in the consumer’s life.
· Active involvement in one’s life and in one’s community. Consumers find that purposeful activity on their own and with the support of peers and service providers is crucial to remaining stable. What is dangerous to one’s mental health is “being left to vegetate in an apartment.” Volunteering is just as rewarding for the individual and valuable to the community as employment. It is important for people to participate in community life and to pursue learning and interests.
· A therapeutic relationship with a professional that regularly allows one to experience feelings, including those of dealing with the life disruptions and difficulties of living with a mental illness – a professional who will take the time to listen.
· Holistic health practices: Meditation. Exercise. Healthy diet. Absence of harmful drugs and substances.
· A stable living environment: financial stability, housing stability, services stability, and community stability.
· Natural supports: close family relations and friendships including for many peer support from others experiencing mental illness.
· Faith in your own potential to recover. Through relationships with others, including consumers and professionals, who believe in your recovery one avoids the life threatening belief that, “I’m going to be this way all of my life. Why should I live?” It is critical to know that it is possible to recover and to be happy again.
· Taking useful medications regularly. This requires trust in the diagnosis and competency of the professional prescribing the medication. This comes from being listened to and understood with regard to one’s experience of medications in the past and those being prescribed. For some being required to go to the provider to receive medication on a schedule has been very helpful in establishing a regimen they want in order to stabilize after being discharged from API. Others feel that the dispersal of medications has been more for the convenience of the provider than the consumers, e.g. requiring that the consumer report to the less convenient of the provider’s offices. In this example, it led to not taking medication due to the difficulty of getting to the provider in the face of energy-depleting depression symptoms. Flexibility in how the provider assists one in using medication helps one’s efforts to use medications effectively to control the symptoms of their illness.
Consumers shared what helps and what hurts in the mental health services they receive on an ongoing basis and suggestions for new and expanded services:
· Experiencing consistency in the professionals who provide services both inside and outside of the hospital and belief on the part of professionals in the consumer’s potential to recover – Having a stable relationship with service providers over time, including with a recovery-oriented psychiatrist, allows the consumer to participate in trying and adjusting medications and developing collaborative relationships in implementing their plan for recovery. One family member reported that her son, who is in his 20s, has been served by 23 psychiatrists. Experiences like this lead to what consumers referred to as “labeling” by a series of providers that respond to the label in the file versus knowledge of the person. This in turn leads to perpetuating an incorrect diagnosis and treatment. Consumers reported that it is much more helpful to work with a professional knowledgeable of the consumer and their experience of their mental illness who takes the time to discuss it with them and to educate them about their illness and treatment alternatives.
· Consistency and control of medications -- Consistency in providers is needed to develop an accurate diagnosis and to allow the consumer to work through alternative medications until they find the one that works best and then to adjust it as they change. Several told stories of their medications being changed each time they are assigned to a new program or psychiatrist – often times without choice.
Also consumers spoke about times when, while receiving care at API, their medications were changed without it being coordinated with their personal doctor either in making the decision or in arranging for care upon discharge. Consumers find it most helpful when they are served by the doctor of their choice over time and that their personal doctor is the one who oversees their inpatient care, especially with regard to medication. What they want is the same kind of consideration they would receive if they were admitted to a private medical and surgical hospital for a medical problem, i.e. their care would be supervised by their personal physician.
· “Bridge the gap” between inpatient care and outpatient support -- Support services need to be in place immediately upon discharge. The ability to have someone to consult with and provide support the first few days and even weeks following discharge is often crucial to bringing stability back to one’s daily life and avoiding relapse. House calls by the case manager for stabilization would be helpful – or by someone who is familiar with the individual and their illness so they can respond appropriately, as a family member would, and not overreact. Also, it worked well when one consumer saw their psychiatrist every day for 4 days upon discharge after a 3-day hospital stay.
· Services are needed 24/7 and need to be consistently accessible in the evening, on weekends, and on holidays – because psychiatric problems do not happen only during normal office hours. In another state, outpatient services are available at the hospital around the clock to help people stabilize without respite care or hospital admission. In Anchorage, it is possible to go up to a month without support due to the case manager taking leave and the person who is covering being too busy with their case load.
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Ongoing daily services need to have flexibility
to accommodate the individual’s “normal” healthy life activities, including
visiting family out of town or out of state,
participating in the family’s fish camp in rural Alaska, spending time
with family in response to events such as deaths, births, and weddings, or
going camping alone or with a friend or family member for a week. Services need to also recognize the cultural
differences and accommodate the individual’s connection with their family and
ethnic group.
· “Warm services:” Someone to call to talk to when needed before going into crisis could avert crisis. At times someone coming to the consumer’s home to “have a cup of coffee” and talk would avert crisis. Sometimes that person could be a peer, sometimes someone with psychiatric training is needed. It would be best if the person responding is someone you know but even more important is that the service be available around the clock. It allows people who are looking and sounding well to not be dismissed until they are in crisis. There is a wide gulf between being “a productive person who is paying rent, a family member with friends the person who suddenly becomes an API patient” isolated, confined and regimented. Warm services could help consumers avoid having to experience such extremes when a person has lapses in taking their medication.
· The AYI model for comprehensive wrap-around services with choice and consumer involvement in planning for service delivery is needed for high API acute care users – individualized and appropriate services. This should include provision for pulling back intensive services as a person recovers.
· Half-way houses are needed by people who are not Medicaid eligible and do not have a clean and safe place to go upon discharge from API. A person without insurance and not Medicaid or Medicare eligible has no follow-up services available to them upon discharge from API. There needs to be some place where such a person can go to reassemble their life.
· More crisis respite alternatives and more lenient admission requirements are needed. Respite provides more freedom than API while receiving treatment, doesn’t isolate the consumer from their family and friends as API does, and the services are individualized to the individual consumer’s needs more than at API. Because respite care happens on a smaller scale than API, there are more opportunities for talking with staff one-on-one and receiving more personal care. Less clinical respite care is needed such as a respite house where clients are involved in the care and maintenance of group living and house upkeep as a part of their recovery, e.g. Utah and California examples.
Consumers recommended developing more pragmatic and understanding approaches to consumers’ use of substances and drugs not prescribed than withholding the privilege of smoking as a behavior control tool and addressing only the negative impacts of substance use. Understanding the reason consumers choose to use drugs and substances is important to assisting the consumer in replacing them with healthier alternatives.
· It is important to understand that substance use and abuse is often times self medication and needs to be addressed pragmatically as such.
· People use nicotine for purposes of relaxation and to off-set the blurred thinking effect of medications.
Consumers and family members desire to feel they hold a higher station in the mental health system than “peon,” and that they have “voice, choice and respect.” Consumers find that opportunities to give and receive support from others with mental illness supports recovery. Consumers want to be able to choose and contract with their service providers. The funds should follow the consumer rather than being attached to the service.
· Peer consumer support is effective as achieved at Computer Connection for many reasons including that it transcends the boundaries between professionals and consumers and operates on a more personal, closer level with the person being supported. Consumers should be on service provider staffs, hiring teams and governing bodies.
Clubhouse
Members of Computer Connection and others who aren’t members but who have had experience with clubhouses voiced support for expanding this one in Anchorage. Computer Connection provides a safe, physically clean place that offers informal peer support, along with the following:
· industrious meaningful activity, e.g. thrift shop, computers, clubhouse maintenance;
· opportunities to be of use to others;
· a place a consumer can go when they are not feeling well to be in the company of others, experience support, and receive advice;
· a place to be with others free of alcohol and drug use;
· information about mental illness, medication, and services;
· opportunities for consumers to see by example how others live with mental illness;
· opportunity to learn new skills, e.g. computer use, and motivation to learn more, e.g. resulting in one member taking college classes.
· structure in one’s life;
· opportunity to be involved in a broader community including consumers’ friends and family members who join in;
· links to employment, e.g. online job searches and applications;
· basic survival tools for people transitioning from the shelter, e.g. personal identification documents, glasses, connection with others, bus tokens, warm place to stay and transportation;
· the time it takes to get to know someone.
Consumers and family members agreed that being in control of one’s own recovery means being able to choose both the services one receives and the people who deliver them. It includes choice between alternative means of managing one’s own mental health. Following are comments that addressed choice:
· Ask the individual what they want and need. It is different for everyone.
· When a team of professionals is imposed on the individual, it is coercive and destroys trust.
· A service team should not be coercive or forceful. A consumer’s worst fear is that someone will knock on their door, hand them their medications, watch them take it and then leave, and come back later in the day to do it again, day after day. It is disrespectful and intrusive.
· Consumer family members report that there is a current practice in Anchorage where some consumers are threaten with “we will know if you do not take your medication” that is counter productive.
· Deciding on and taking medication should be a partnership effort with continuity in the decision-making process as the provider and consumer figure out together what works best.
· Consumers report that there is a current practice in Anchorage to require consumers to attend specific groups, e.g. MICA, in order to receive services or to receive housing which consumers and family members believe has more to do with the provider being able to bill for reimbursement than with meeting consumer needs. One example given was of a consumer required to attend groups and who is receiving medication deliveries that does not know who his case manager is.
· Consumers should participate in developing plans for the services they want to implement with the assistance of the service provider as they proceed through recovery.
· The consumer should be able to choose who within the service team they prefer to work with for which purposes and be allowed to switch.
· Consumers feel they do not have a choice in providers now and are “pigeon-holed” into a specific program that have specific requirements more attuned to Medicaid reimbursement than to them individually. They do not have a choice of programs versus individualized services that assist them with their particular path toward recovery. If they do not comply with the program requirements, e.g. attending a group, they are “pulled out” of the service or program.
· Anchorage needs alternative provider organizations.
Some of those attending the meeting had read the RFGP and the report to consumers and had suggestions specific to the proposal:
· The new service should not be called PACT due to the association of PACT with coercion. Don’t add Alaska to the list of state’s with PACT while consumers in other states are fighting to get rid of it due to its role in implementing outpatient commitment and coercive medication.
· Model after AYI with individualized and suitable treatment.
· Pull services back as person progresses in their recovery.
· Include advanced directives that are realistic.
· Clarify information for consumers regarding medications and respond to the consumer’s experience with medication and instances when they were not helpful or were harmful.
· Trusting relationships with team members is critical.
· PACT incorporates flexibility and choice.
· Consumers should have access to PACT regardless of severity – should be available to anyone coming out of API or even in API.
· Run a pilot program first to see if it is effective.
· Build around wellness.
· Services and medication should be separate from housing.
· Medication assistance should be determined by the consumer and flexible, e.g. the choice to just be called once a day and reminded.
· The case manager needs to be able to facilitate access to community services the consumer chooses and not be limited to one providing organization.
· Don’t have one team meeting all needs but rather support access to other community resources, e.g. provide transportation for consumer to attend a MICA group or an Akido class.
· Allow for the individual to choose to be served by another psychiatrist with back-up, as needed, by the team psychiatrist.
Reviewers' Comments
This outcome summary was circulated to the participating organizations for review and comment. Following are comments received as of November 14, 2000:
I was not happy with your notes because it was not enough said that the Computer Connection Clubhouse model is the answer to down size hospital beds.
Last spring, there were 3 consumers who lost their lives, I am absolutely sure we could handle it for them to be alive now if they knew we were here. Last week we had another example. It was an ex parte case, no respite bed, refusal to go to API; after 2 days, this person was just fine like before the episode.
If you were here when it happened, you will believe me. If there are 3-4 drop in centers like this in the Anchorage area, I can guarantee you bed numbers in API would go down dramatically.