| The Ten Rules for Quality Mental Health Services in New York State |
| RULE # 1 There must be Informed Choice Our collective definition of informed choice is best stated as obtaining useful information from the practitioner or professional and then deciding individually or collaboratively on the best course of action that promotes independence, recovery and an improved quality of life. This means that the professional must be knowledgeable and exhibit flexibility and openness toward information related to recovery, which may include treatment programs or treatment options that are holistic or services that are complementary to traditional treatment. This would include benefits and possible pitfalls to any treatment Informed choice includes an educational approach to medications and side effects on behalf of all parties so that sound knowledgeable risk can be decided upon by us or collaboratively with the family, friends and/or our practitioners. This issue of medication is extremely important to those of us involved in the dialogues as the current status of medication administration is mostly seen as coercive and forceful and offers little or no information on what medications are doing to us beyond the treatment of symptoms. Medication education for prescriber's, practitioners, therapists and peers is of the utmost importance and must be a priority. Informed choice cannot be exercised without accurate information. Many of us are quite capable of making decisions even if we are experiencing a severe emotional state of mind or presence. A system that promotes recovery would have genuine informed choice as the foundation of its service delivery. We also feel that informed choice must be a part of goal setting. One participant felt that, "Information should be up front before any decisions are made." Additionally, service planning that is built upon a foundation of informed choice should take into account the whole person, not just the mental health-related symptoms. For example, spirituality, cultural background, physical well-being, community connections and social supports are essential considerations. On a final note, a system that truly values informed choice will assure that each person who walks through the doors of the program is offered education on Advance Directives. Additionally, if someone within the program or service has an Advance Directive, the contents of that document would be respected and valued as a legitimate statement of the person's treatment decisions. |
| RULE # 2 It must be Recovery Focused Recovery is individualized and personal and is not a product for the world to witness and judge. We believe that a recovery-oriented system would allow people to move forward at their own pace, without judgment or labels and would present opportunities for wellness and life development that are built upon a foundational belief that healing is possible and very real. Many of us feel that a recovery-oriented system would allow for failures as well as successes. In the past, many of us have experienced loss of support when we needed it most because we have not been able to move in and out of the system with ease. Services that are recovery focused look beyond the traditional medical model to other fields, practices, cultures and perspectives. A recovery-focused process involves a strengths-based approach that promotes a mutual connection between the service provider and the person who is using mental health services that instills trust and hope. When a professional looks beyond symptoms and gets to know us as whole people, the foundation for recovery is being set. It cannot be stressed enough that listening and validating our humanity is key to developing a healthy trusting relationship. Without a positive healing relationship and trust, a roadblock to recovery is created. We become victims to static, hopeless "programs" and exhibit little or no growth. We lose our self-esteem and hope is shattered. One of the barriers to having a recovery-focused system is lack of education. There must be an education process developed in collaboration with providers and the person who is using the service for the community at large that addresses discrimination by proving that people can and do recover from mental health issues. Additionally, we feel that knowledge is power. For that reason, educational materials need to be available at all service delivery points and must include, but not be limited to the following topics: • Coping Skills, Self-Advocacy Skills • Socialization and Recreational Opportunities • Local Peer-Operated Programs & Advocacy Services • Educational Opportunities & Entitlement Information • Alternative Treatment Self-Advocacy • Self-Help & Empowerment Services & Peer Support Groups • Crisis Diversion Programs • Vocational Opportunities • What are Recovery-Oriented Services? When we use mental health services, we are "customers" of that service. To us, that means that once we create a goal, it should be measurable, and funding should be tied to the successes or failures of that goal. The funds should be under some sort of control of the person to empower him/her in deciding whether the services that he/she is getting are quality, recovery-oriented services and that the provider is worthy of continued receipt of funding. |
| RULE # 3 It must be Person Centered We believe that for mental health to be person centered it must be delivered in a manner that is respectful, valued, validating and consistent. Person-centered planning requires a partnership that is a collaboration of ideas that solely focus on us as individuals and helps professionals understand that the consumer is the "hub of the wheel." Person centered planning must be driven by the person's strengths, values, culture, beliefs, spirituality and preferences. By recognizing personal values and by consistently treating the consumer with respect and dignity, treatment plans are truly individualized as they identify with the whole person. In addition to being strengths focused, it is most important to note that the person who is using services is in charge of the planning. In the past, many of us have felt as if we were having services done "to us." For true person-centered planning to occur, we must be central to the decision making. We also feel that it is very important that we have the option to involve our support system in our planning. This support system should not be limited to traditional definitions of family and/or significant others, but should be expanded to include friends and peers. Person-centered care focuses all outcomes on the individual's life in regards to housing, benefits, jobs, health, family, recreational choices, relationships and any other aspects of life that human beings may experience. Person-centered planning must not be economically driven but rather treatment driven based on our terms, our choices and our individualized needs. Most importantly, person-centered planning must not be time restricted. In the past, some of us have experienced service providers who have instilled guilt when a choice is made or when we don't find a suggestion favorable to us. This type of coercion has been a common barrier that has prevented person-centered planning. |
| RULE # 4 Do No Harm Many of us agree that there have been times when our stays in hospitals and mental health programs have contributed to our problems and even re-traumatized us. We would like to see the following procedures included in any service delivery system: • Refer to our Advance Directives and/or Wellness Recovery Action Plan and follow instructions within these documents before reacting to a situation. • Consider "Forced Treatment" as a system failure. "If you have to force me to use your services, you have failed to engage me in the treatment process. This is not my failure, it is yours." This could be addressed by having service providers think outside the box by offering new and innovative services might be used voluntarily. • Eliminate restraint and seclusion as it only makes us feel •worthless and inhuman. "We are in a hospital to heal, not to create deeper wounds or further trauma." • "The term non-compliant is representative of the perspective that the provider is the expert, and it assumes that I am not an equal partner in my services." Providers should recognize that the use of this term is a covert form of coercion, and it works against a partnership based on respect. For that reason, use of this term should be discontinued. • Selectively partner compatible people that we choose as roommates so that our stay in services can be as safe and comfortable as possible. • Listen to us and be patient and respectful when we ask for your time and attention. Discuss a variety of treatment options and allow us the time to make an informed choice. If we request the involvement of our family, friends or significant others, they must be fully informed of treatment options and risks on a regular basis. Additionally, this rule applies to the community at large. For example, we feel that education for law enforcement agencies is a priority so that police officers do not react in an aggressive manner which might create a more dangerous situation. Society as a whole must be educated on mental health issues so that they are aware that we are not dangerous people. Education would be helpful in reducing discrimination as people would learn to treat us with dignity and respect, no matter what emotional state we may be experiencing. |
| RULE # 5 There must be Free Access to Records Access to records is an issue that has historically been and continues to be problematic for those of us in the mental health system. Our families also share this frustration. Some of us have experienced long waiting periods for our records and copying fees that we can't afford. For this reason, we would like to see access to records simplified by allowing free, uninhibited access to us from hospitals, psychiatrists, doctors, clinics and therapists. For those of us who make requests for records and are denied, we would request that services be mandated to have Clinical Access Review Committees so a grievance process can be followed. Our experience also leads us to want more accurate record keeping that is created jointly with the person who is using the service. Additionally, we want to have the ability to change or comment on records without having to go through a lot of "red tape." This particular rule is important as it allows us to not only access our records, but empowers us to participate in a permanent "story" about us. Providers should also be sensitive to the fact that mental health records are viewed differently than traditional health-related medical records. Mental health records keep us from getting good jobs or certifications in specialized fields. Mental health records can be great barriers to achieving a quality of life that is free from stigma and discrimination. That is why we must have more input into our records and more adequate training must be offered to providers in this area. We have the right to insure that the truth is written about our lives. The Health Insurance Portability Accountability Act (HIPAA) leaves us hopeful that this is a major step toward accessing our records and protecting our confidentiality. However, we would like it stated that although we are promised confidentiality within mental health services, it often is not adhered to. This issue should be taken more seriously and offenses should be more aggressively enforced. |
| RULE # 6 It Must Be Based on Trust Trust is the key to creating an environment that promotes recovery. Where there is honesty and trust, there is a strong, healthy relationship. Most of us who have participated in this dialogue have stated repeatedly that trust and listening are the most helpful forms of "treatment" that exist in supporting the recovery process. By listening more intently, a professional can begin to more comfortably trust a consumer's perspective and let go of the controlled responses that have been infused into some modes of treatment We agree that coercion and fear have been barriers to trusting mental health providers, and a relationship based on trust and equality would drastically eliminate this as an issue. We consistently witness this in many of our self-help groups. Self-help groups foster an environment of hope because we see each other as equal "people" and interact in a healthy, healing, supportive and trusting environment. It is not always that way with the professional community. Many of us have experienced providers who come across very stale, clinical, sterile and boundary restricted. We want to develop relationships that foster an environment of equality and informed choice within the mental health services that we choose to utilize. Specifically, our goal is to have the provider discuss the pros and cons of every treatment option in relation to the individual and not focus primarily on our diagnosis. For this relationship to exist there must be mutual respect. We recognize that mental health professionals have expertise. We also ask for recognition from the professional that we have expertise of our own because we live it every day. Additionally, open communication, honesty, clear expectations and active listening are essential tools in the development of a relationship built on trust. Unfortunately, many of us have examples of how this is not occurring. When a trusting relationship is present, a service provider will give accurate information and education on the following service choices: • Medications Gong/short-term side effects; "What does it do to me?") • Therapy (What is it? Is it recovery focused?) • Programs (IPRT's, DBT, etc, and What are the expected outcomes of each program?" "How long will I have to attend?") • Housing ("What options exist? Will this promote wellness? Does it place me back in the "bad" section of town?") • Alternatives ("What if I do nothing? What other options exist? What do you know about alternative therapy?") The trusting relationships must also extend to consumer-run programs, peer support services and self-help groups through honest, direct communication, support and equality. Trusting partnerships between consumer- operated services and providers can be beneficial as they may result in collaborations that educate the community about recovery and address discrimination. It should be recognized by the community that it takes a village to recover, and this should be done by maximizing resources through the collaboration of peer-run and traditional services that are based on a trusting relationship. One of the barriers to achieving trusting relationships is that we believe that the professional community is constantly "under the gun" to deliver units of service numbers for the funding regulators. The human factor is often left out of this equation. The system of reporting as it currently stands does not show any type of recovery- focused outcomes. Additionally, it inhibits focus on us, as consumer and emphasizes that the reporting guidelines are more about numbers than people. This barrier could be addressed by allowing us to be a part of the reporting through the development of recovery outcomes. We would like to have The Office of Mental Health and local government entities involved in this trusting relationship as well. We would like to see greater collaboration on new programs and initiatives, and this white paper may be a very good start in building that trusting relationship. |
