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Consumer Involvement Report

  • Parent Category: News
  • Last Updated on Monday, 10 November 2014 21:55
  • Published on Monday, 10 November 2014 20:34
  • Written by Lydia Richard

Meaningful Consumer and Family Involvement: Report out from the Consumer/Family Ad Hoc Committee to the Behavioral Health Home Working Group

10/15/14

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“Meaningful involvement” of consumers and families in mental health system and policy development isn't just about inviting people to meetings, input, and the opportunity to respond to decisions that have already been made. Rather, it includes acknowledgement, understanding, and actions that reflect the knowledge that without the inclusion of consumers and families in these discussions and decisions, what works - and what does not - cannot be known or offered.

The following recommendations represent the synthesis of a series of discussions about how to support “meaningful consumer and family involvement” in the process of implementing, improving, and evaluating the Behavioral Health Home model. While additional work is needed, these recommendations provide an initial framework for further discussion.  

Recommendations to the BHH Implementation Group

  1. Understand the context

People with serious mental illness and their families often experience a power imbalance in their interactions with mental health providers, policymakers, and systems. Consumers in particular are subject to involuntary commitment and restrictions in civil liberties; this has an impact on how they experience interactions with policymakers, providers, and service systems. To understand the context:

  • Seek out training from consumers and families for providers, policymakers, and others on consumer/family movements.
  • Provide facilitation that explicitly and concretely values diverse opinions, respects all voices, and continuously encourages and clarifies the discussion.
  • Don’t expect consumers and families to become experts in policy, jargon, or bureaucracy.
  • Listen for what consumers and families are saying in the language of lived experience. Apply that input towards the common goal of quality, humane, effective treatment.
  • Promote and value the expertise of consumers and family members through recognition of their lived experience, thus mitigating stigma and paternalism.
  • Don’t isolate the consumer/family voice: integrate into broader discussions with providers and other stakeholders.
  • Time should be allocated to discuss with the full working group providers’ understanding of meaningful involvement, the value of it to their organizations and services, the questions and problems they have encountered in trying to achieve it, their successes, barriers, and their ideas for moving forward. Families and consumers should be involved in creating the agenda for this meeting.

2. Support involvement

Support meaningful involvement early and often: at the beginning, middle, and end; in planning and design, training and implementation, and ongoing quality improvement.

  • Provide orientation, context, training, and resources to enable consumer and family participants to better understand the issues and participate in discussion.
  • Ask about consumer and family priorities and build those issues into the agenda for meetings.
  • Ask about and be prepared to address barriers to full participation such as transportation, interpreters, child care, meeting times. Look for solutions to logistical problems.
  • Offer stipends, if possible.
  • Create a glossary with definitions, acronyms and terms that are used in each workgroup or project.
  • Provide materials in advance to allow ample time to read and understand. Allow time for clarifying questions or to do further research, especially if it is a new concept.
  • Find or cultivate a champion who will lead and encourage cultural changes that embrace the value, necessity, and effectiveness of meaningful consumer and family involvement.
  • Promote better understanding of the Learning Collaborative: who are the current consultants to the collaborative, how are decisions made as to what experts are brought in to train, and what information and/or treatment approaches are being taught as best practices. What are the values guiding the work of the collaborative? How are decisions made as to who participates, both as presenters/trainers, and audience?
  • When training/presentations center on treatment approaches, staffing structures, etc., specific to supporting people to deal with their distress and live self-determined satisfying lives, primary recipients of services should always speak for themselves, and from that diverse knowledge base.
  • People should be able to speak for themselves: For instance, provider or family organizations should not take the lead in organizing or reflecting consumer/survivor experience and expertise, even if they employ consumer/survivors in identified peer positions (although self-identified peers working within provider or family organizations should have the opportunity to offer training and presentations).

3. Cast a broad net

Meaningful consumer involvement does not rely solely on a small group of highly engaged or experienced advocates, but also draws from the larger population, supporting involvement on a number of levels and via varied channels.

  • Avoid tokenism and isolation: encourage at least 2 family and/or consumer representatives.
  • Avoid favoritism: no one person or organization is an expert on everything. Reach out to include those that have no affiliations.
  • Offer multiple ways to participate:
  1. Email –especially via established consumer/family organizations and groups who have broad contacts.
  2. Social media, websites
  3. Community/local meetings, support groups, social clubs - bring the message to consumers and families where they are most comfortable.
  4. Focus groups, surveys
  • Reach out to multiple consumer and family organizations for training, speakers, or for suggestions for consumer and family representatives.
  • Actively recruit family and consumer representatives, don’t wait for them to come to you.

4. Track if it is working

  • Survey consumers and families to see if they are hearing about the work and understand how they can get involved.
  • Gather satisfaction/improvement feedback regularly from participants
  • Identify successes and improvements that would not have happened but for meaningful consumer and family involvement.

5. Beyond the BHH Working Group:

The Ad Hoc Group discussed a number of issues that went beyond the specific charge of the BHH Working Group.  The following points do not necessarily represent a consensus recommendation from the committee; rather, these points are captured here because they were raised in these discussions. While beyond the scope of the BHH Work Group, individual members of the ad hoc committee (and/or others) may want to pursue these items as part of other advocacy efforts:

  • Create funded advocacy as part of Maine’s Mental Health Plan for a Consumer TA Network or a funded Community of Practice (CoP) to standardize and set guidelines for consumer involvement. Include “real” consumers as paid consultants to our TA Network or our Community of Practice; no more volunteers.
  • Provide a learning collaborative for consumers and family members, driven by an agenda developed by consumers and family members, built around issues of concern to consumers and family members, and getting broad-based feedback. Critical would be good facilitators who could help us through the process; include opportunities for consumers and family members to get whatever training and supports necessary to be able participate fully in all aspects of the ongoing work that need to be done.
  • Make recommendations to "mitigate the risk" that has occurred as a result of the previous lack of meaningful consumer/family/parent/youth involvement in the change in service delivery of behavioral health services to MaineCare recipients with "severe and persistent mental illness" to the SIMS Governing Structure. Sufficient meeting time should be given for full discussion, with families and consumers fully participating in designing/setting the agenda.

Working Definition: Meaningful Consumer and Family Involvement

Meaningful consumer and family involvement is when people with lived experience in Maine’s mental health system are able to participate as full partners in, and contribute their expertise to, all aspects of planning, design, implementation, delivery, and continuous quality improvement of mental health systems and services, and to have that participation and expertise reflected in the decisions made regarding changes and/or improvements in the policies, systems, and structures that support the delivery of mental health services.  

 

Sharing Voices and Visions Notes

  • Parent Category: News
  • Last Updated on Monday, 28 July 2014 20:47
  • Published on Monday, 28 July 2014 20:47
  • Written by Lydia Richard

Sharing Voices and Visions

June 27, 2014

Maple Hill Farm – Hallowell

Discussion Notes

1.        What are your rights? Share with the room a right that you have as a person diagnosed with or labeled with mental illness.

            Right to be seen and heard.

            Right to have access to our children.

            Right to say no!

            Right to hear positive thoughts and not hear a single negative thing.

            Rights granted under 1st, 4th, 14th Amendments.

            Right to make choices.

            Rights granted under the UN Declaration of Human Rights.

            Right to have feelings about what is happening to us.

            Right not to be defined by our illness.

            Right to fail.

            Right to be involved in my treatment.

            Right to be free of stigma.

            Right to go outside.

            Right to be discharged when I’m well!

            Right to real pharmaceutical studies, done in an unbiased way, that I can trust.

            Right to dignity and respect.

            Right to confidentiality.

            Right to be told the truth.

            Right to patient representative/lawyer.

            Right to know about and receive alternatives to treatment, and have them covered by insurance.

            Right to know true side effects of meds.

            Right to see medical records and have comments added to them.

            Right to be seen as an expert on my life.

            Right to be seen as the valuable resource that I am.

            Right to advance directives.

            Right to be free from stereotypes.

            Right to take charge of my own recovery.

            Right to do with that recovery as I wish.

            Right to be heard by courts.

            Right to drafting of my own treatment plan.

            Right to a strengths-based treatment plan.

2.        If you could change one thing about the mental health services system overall, what would it be?

             ER waits.

            No seclusion and restraint.

            Eliminate PNMIs (person first housing)

            Integrate peer support across system.

            Work of peer support to be meaningful, strengths-based.

            WRAP plan into advance directives.

            More than 1 call per day in state hospitals.

            Access to alternative treatments.

            Right to define own treatment.

            No involuntary treatment.

            To be HEARD! “I am the expert.”

            Treated as equals regardless of funding source.

            Make mental health environments comfortable.

            Everyone/anyone receive services they want regardless of ability to pay.

            Support family members.

            Get help in your home, not be hospitalized, no cops.

            Accessibility to treatment.

            Transportation.

            Peer support reimbursable.

            More consumers on hospital boards.

            More consumers involved in public policy.

            Mental illness treated like any other disease.

            Exit interviews for patients.

            Make services based on love and work perfectly.

            Information and consent to be real.

            Offer employment first!

            More peer support, more funding for what works.

            More peer support!

            More alternatives to treatment.

            Website for consumers, clearinghouse of information.

            Refund AIN

            Advocacy education for all.

            Train mental health workers on recovery so they start with the premise that recovery works.

            Get rid of labels.

            Presumption of dignity for all.

            Legal assistance for child custody issues and help reinstating rights.

            Peer supports available wherever people are, including prisons and jails.

            Eliminate coercion and abuse.

            Staff must state 2 positives before saying what’s wrong (state all negatives as positives).

            SIPS trainers knowledgeable about peer support.

            Accept and acknowledge when people change for the better.

            No involuntary treatment!

            Choice!

            Alternatives within treatment plan – what works for them.

            Honor rights!

            Alternatives to treatment – a walk, a hug, Don’t just shove meds.

            Elimination of labels.

            Medical clearance must be true, rule out medical issues!

            Alternative educational approaches to be able to do peer support.

            Right to be sick without being pushed into services.

            Look at people as individuals!!!

            Offer hugs.

            End ED discrimination!

            More discussion about prevention and early intervention.

            Let’s pull our fellow peers up versus being negative.

            Peer support in all emergency departments (MMC success).

            Peer inclusion in decisions.

            Use energy, sing, exercise, etc.

            Space.

            Place to recover from mental health treatment.

            Peer respite in beautiful place like Maple Hill J

            Being heard.

            To see the system transform to include more rehabilitative approaches to wellness, that have not been traditionally used. I want to build a community that sees itself as many pieces of the whole, and how we need each other to get to where we want to be.       

3.        What one thing works well for you or would be helpful to you or has been helpful to you in a time of emotional distress or crisis?

 

            Talking.

            Taking time to breathe.

            Having professionals listen.

            Having peer supports.

            When I was heard.

            Listen, don’t fix.

            Offer choices and alternatives.

            Meaningful work.

            When seen as an asset to me and others.

            Helping others help me.

            Pets, family, and friends.

            Staying busy and activities.

            Being with positive and capable people.

            Massage.

            Exercise.

            Meditation and mindfulness.

            Music.

            Prayer.

            Friendship.

            My hobbies.

            Sharing my story.

            Others who gave hope when I had none.

            Not being judged, especially negatively.

            Passionate peer and family support.

            Respect.

            Hugs not restraints. Hugs not restraints.

            Humor.

            TV, movies.

            Watching Red Sox.

            Sex.

            Me signing my own consent.

            Pets.

            Love is a powerful drug.

            Support groups and peers.

            Peer respite.

            Alternatives of my choosing (horseback riding!)

            Spirituality.

            Creative outlets.

            Faith.

            Trauma informed services.

            Hugs for huggers.

            WRAP.

            Peer support. Peer support. Peer support. Peer support.

            Centers for us (SC, LRC, PCRC)

            Games.

            Yoga classes.

            Being our own advocate for what works, together.

            Eating together.

            Validation.

            Get to know our fellow peers in gatherings.

4.        What one thing would you do or commit to or be involved with or be         interested in – regarding changing the mental health system – after     today? What issues – treatment, housing, employment, medication,   consent, etc. – are you passionate about?

 

Thoughts on the Wall

 

The current CIPPS or Intentional Support Program Trainees are not familiar with the many programs serving consumers. How can we retrain the state trainers?

Re Androscoggin County: Ride share, transport to Dr’s appointments and rehab appointments.

MaineCare Non-Emergency Transportation

  • Parent Category: News
  • Last Updated on Friday, 27 June 2014 18:38
  • Published on Friday, 27 June 2014 18:38
  • Written by Lydia Richard

For trips through the end of July 2014, continue to contact your current broker. For trips on August 1, 2014 or later, locate your county or town information on this chart to find out who you should contact.

If you live in:

You will call:

Androscoggin County – All Towns

Your new broker is Logisticare. You can call them at:   855-608-5180

Aroostook County – All Towns

Your new broker is Logisticare. You can call them at:   855-608-5174

Cumberland County – Brunswick and Harpswell

Your new broker is MidCoast Connector. You can call them   at:        855-930-7900

Cumberland County – All Other Towns

Your new broker is Logisticare. You can call them at:   855-608-5178

Franklin County – All Towns

Your new broker is Logisticare. You can call them at:   855-608-5180

Hancock County – Town of Danforth

Your new broker is Logisticare. You can call them at:   855-608-5174

Hancock County – All Other Towns

Your new broker is Logisticare. You can call them at:   855-608-5176

Kennebec County – All Towns

Your new broker is Penquis CAP. You can call them at:   844-736-7847

Knox County – Town of Isle au Haut

Your new broker is Logisticare. You can call them at:   855-608-5174

Knox County – All Other Towns

Your new broker is MidCoast Connector. You can call them   at:      855-930-7900

Lincoln County – All Towns

Your new broker is MidCoast Connector. You can call them   at:    855-930-7900

Oxford County – Towns of Porter, Hiram, Brownfield,   Denmark, Sweden, Fryeburg, Lovell, Stow, and Stoneham

Your broker has not changed. Continue to call LogistiCare   at:          877-659-1302

Oxford County – All Other Towns

Your new broker is Logisticare. You can call them at:   855-608-5180

Penobscot County – Town of Patten

Your new broker is Logisticare. You can call them at:   855-608-5174

Penobscot County -   All other Towns

Your broker has not changed. Continue to call Penquis CAP   at:          855-437-5883

Piscataquis County – All Towns

Your broker has not changed. Continue to call Penquis CAP   at:        855-437-5883

Sagadahoc County – All Towns

Your new broker is MidCoast Connector. You can call them   at:          855-930-7900

Somerset County- All Towns

Your new broker is Penquis CAP, you can call them at:   844-736-7847

Waldo County – All Towns

Your new broker is MidCoast Connector. You can call them at:            855-930-7900

Washington County – All Towns

Your new broker is Logisticare. You can call them at:   855-608-5176

York County- All Towns

Your broker has not changed. Continue to call LogistiCare   at:          877-659-1302

Reduction in Food Supplement benefits on November 1, 2013

  • Parent Category: News
  • Last Updated on Sunday, 06 October 2013 17:41
  • Published on Sunday, 06 October 2013 17:41
  • Written by Lydia Richard

In response to the economic recession, the 2009 Recovery Act (ARRA) increased Food Supplement benefits (formerly Food Stamps) to ease the economic hardship that many were facing.  On November 1st the increase in benefits will expire.  

This means that a single person will likely lose $11 and a family of 3 will lose $29.  Click here to download a chart that shows the estimated amount that households will lose.

This cut will affect all of the approximately 130,000 Maine households who receive Food Supplement benefits. The Department of Health and Human Services will send a notice to all of these households with the amount of the cut that they will see in their benefit before making the cut in November. 

Some families and individuals may need help from a food pantry to make up this loss.

You can find a list of food pantries that may be able to provide some help at:  

  • Or you can call 2-1-1, a statewide directory of over 8,000 health and human services available in Maine.  You can call 24 hours a day, 7 days a week.

Click here to download information from the Maine Department of Human Services on this cut.

If you have questions, contact Robyn Merrill at Maine Equal Justice by

This email address is being protected from spambots. You need JavaScript enabled to view it. or call: in Augusta 207-626-7058 x207, or toll-free 1-866-626-7059 x207.   

HealthInfoNet Update

  • Parent Category: News
  • Last Updated on Monday, 10 June 2013 12:37
  • Published on Monday, 10 June 2013 12:37
  • Written by Lydia Richard

New Consent Options for Mental Health and HIV Information

 

Patients in Maine can now consent to share their protected mental health and/or HIV information using   HealthInfoNet.

 

Across Maine, efforts are   underway to integrate mental health with general medical care services.   Primary care practices in particular are adding mental health professionals   to their care teams, helping them work together to care for a patient's whole   person needs. But when a patient travels outside that organization to seek   care at independent mental health agencies or hospitals, there remain large   gaps in information sharing. Soon this mental health information, along   with HIV lab tests, will be included in a patient's HealthInfoNet record and   accessible to their providers with patient consent. Until now, information   from a licensed mental health providers or facilities and results of HIV lab   test results were not available in the system per state law. But the law was   amended to provide patients a choice.

 

HealthInfoNet has been   working for the past year to build the technical structure needed to   accommodate both including this information in the system and the consent   process required. This functionality should be in place later this summer.

 

It will be some time until   all a patient's mental health and/or HIV information will be available, but   they can consent now. This way as soon as any of this information is   available, it will be automatically included in their HealthInfoNet record.

 

For more information   about the consent process and what information will be available, visit our website.

 

 

Funded In Part By:

Wrendy Hayne Mental Health Fund-Maine Community Foundation

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Pillars of Peer Support Presentation

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