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Adult Services Focus Groups Summary Report - Consumer Quality ...

Adult Services Focus Groups Summary Report - Consumer Quality ...

Most participants

Most participants reported that program rules and policies were often rigid andnonsensical, ignored individuals’ unique needs, and could be applied arbitrarily.Consumer frustration with this concern was palpable. Participants felt that what is rightfor one person is not necessarily what is right for another. Elders and those in residentialprograms were the most concerned with rules because they felt they often limited theirfreedom and independence. Requirements to be “out of the house” for 5+ hours per dayor to attend a program 4+ days a week were not often inconsistent with a person’s needsor desires.Components of consumer-driven careParticipants uniformly agreed that programs and systems should be developed to meet theneeds and desires of people with mental illness, not just those of providers. Below aresome of the major domains identified by participants as fundamental to consumer-drivenservices.1. Person-centered and strength-based. Person-centered care requires thatproviders recognize the person’s right to their opinions and to exercise their strengths,both of which should be valued. Many consumers were looking for better patient-staffcollaboration, emphasizing the importance of staff’s listening to them, and then thatinformation being integrated into their treatment plan.Individualized services require staff and clinicians to really get to know theirclients. Consumers were interested in staff spending more time getting to know them asindividuals. Individualized care requires providers to proceed at the pace of the person,not what is needed programmatically.2. Person involvement in treatment planning. Participants said that it was criticalfor a person to be involved in and contributing to their treatment and treatment planning.We heard a familiar refrain from consumers: “How else would you learn how to takecare of yourself and become more independent.” Person-involvement requires thatproviders find out what is on people’s minds and what they really want to do. One personnoted that it “should be the consumer’s objective, not what fits into the clinician’sframework or formula.” They felt that providers/clinicians should not make decisions forthem. Many participants felt that providers in inpatient and community settings,particularly group homes, did not adequately involve them in their treatment planning.3. Respect. Participants said that staff “respecting” them and their wishes wascritical for their recovery. Participants also said that coercion/restraints should beavoided, but if used, consumers should be told why it happened and what can be done toavoid it.4. Self-determination. People talked about self-determination in a variety ofways, but the strongest theme was “freedom… to get out on my own.” People alsostressed needing independence. In fact, participants noted that they needed, “…space torecover, to be free to come and go... that getting out of the house is essential torecovery.”Consumer Quality Initiatives6/26/066

Programs and Services StaffStaff QualitiesParticipants felt that not all people are capable of taking on the responsibilities of staff ina recovery-oriented system. In general, they felt that such staff needed to:• know about mental illness and mental health;• be of good character, not the kind of person who engages in “baiting” (e.g.provoking or harassing);• have the capacity to offer hope, which can be as simple as saying the right thing;• have a positive focus;• be empathetic, a good listener and a strong advocate; and• be relatable, have less distance, and open up on a personal level.Role of Case ManagerParticipants very much valued having a DMH case manager to assist them withidentifying and accessing useful services, as well as to discuss problems and to help withrides. Many participants identified their case manager as the first person that they turnedto when they had an issue, and many felt that their case manager understood thembecause s/he helped them access the services they needed.Many consumers felt it would be okay for them to no longer have a DMH case manager,but only if they no longer needed that assistance, or a private program (e.g., supportedhousing) could pick up the case manager’s role. Several were concerned that they lostcontact with their case manager when they were hospitalized.DISCUSSIONDMH has many important challenges for the future. The most important challenge is tomove from a system that is rooted in a psychiatric philosophy that focuses on treatmentand stabilization, to one that utilizes a public health approach, with a strong focus onrehabilitation, recovery, and the development of natural supports in the community.This public health approach starts with prevention: creating an environment wherecommunity members, family, and friends can take steps to avoid the ravages of mentalillness and its antecedent effects (egs., poverty, medical co-morbidity). DMH will need tocontinue to support the further development of peer support groups and services, wellnessactivities, opportunities to develop crisis and life plans, and respite services.In a system that values prevention, community members should have an opportunity toget individualized help before becoming so ill they become DMH-eligible. MassHealthprovides some basic services, but in times of intense distress consumers may need morecomprehensive help, including housing and employment assistance. In addition, aculturally appropriate anti-stigma campaign, in collaboration with consumers, couldencourage people in distress to ask for help. As a requisite preliminary step however,Consumer Quality Initiatives6/26/067

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