Join Us! Everyone is welcome. No experience needed- just a desire to raise your voice for change.

Consumer Health Equity Advisory Group

Coming together to drive the agenda for meaningful change

Health Care Planning is for Everyone

Adults, community groups and advocates are raising their voices to get better care today and over their lifetime.

The Consumer Health Equity Advisory Group is elevating the voice and knowledge of everyday people. Together consumers can address the barriers to equitable care and inform and guide solutions to improve local and state initiatives.

Take Control. Drive Change. Take Action.

Working together to advance equity in three ways.

acknowledge bias

1. Take Control. Make a Plan.

Empower all adults to make care plan.

· Know your rights. Voice your care decisions.

· Improve language access and culturally competent materials.

· Talk with your health care provider about your plan to get good care today, and over your lifetime.

Make Your Own Plan. Click on Quick Start!

Quick Start Graphic

 

 

 

 

Be anti-racist

2. Drive Change. Remove Barriers.

Adults, advocates and consumer groups will-

·  Find common threads and set achievable goals.

· Name and dismantle barriers and policies that disproportionately disadvantage historically marginalized populations.

· Promote strategies for a more diverse workforce.

· Inform & guide solutions for access to equitable care.

 View Resources below.

 

 

 

MOLST form users

3. Take Action. Get Better Care.

Be an consumer stakeholder!

New State Program: Serious Illness Care and POLST Program 

The State is taking steps to improve the way we care for seriously ill adults and honor their care choices in a new POLST Program (Portable Medical Orders). As Consumer Stakeholders, we will offer feedback to improve the clinician-patient partnership, and inform and guide solutions to ensure all adults receive timely, equitable quality care.

Issues Consumers are Talking About

All issues are on the table Although the Advisory Group can not address every issue that impacts health inequities, we are finding common threads to set achievable goals to drive our collective missions. Here are some of the common issues we are working on to date:

 

1.  Covid-19 : What did we learn to make health equity a movement?

  • Address the immediate and long term health needs created by the pandemic
  • Take action on policies that disproportionally disadvantage historically marginalized populations.
  • Use language as an asset, not a barrier, to making a plan and getting good care.
  • Address health related social needs or social determinants of health that severally impact health.
    • We'll talk with experts and flex our consumer muscle to help make changes in our communities.

2. Let's Talk about Racism, Bias, Discrimination. Create Tools for Change.

The Advisory Group is discussing the hard truths and roots causes of structural racism and policies that create health disparities. We are assembling information & tools to empower consumers and care providers to work together to make meaningful change.

    •  For Consumers: 
      • Multi-lingual planning documents & culturally competent information to understand and make care choices;
      • Self-advocacy tools and resources for what to do when faced with racism and bias. 
    •  For Care Providers:  
      • Conversation guides and procedures to balance the clinician-patient/advocate partnership;
      • Support the development of  statewide implicit bias education and training.
      • Promote strategies to implement a more inclusive recruitment process to create a more diversified workforce.

3. Your Concerns and Care Choices Matter! 

  • Let's help each other-person to person- take control of our health care choices by making a personal plan. Your plan is your roadmap to getting the care you want and can protect against racism,  bias and discrimination.  Every adult can start to make a plan with-
    • The Getting Started Tool Kit.  Choose a trusted person to be your Health Care Agent in a Health Care Proxy. No Agent? No Problem, just start with the Personal Directive (Living Will).  Free documents to do-it-yourself! Link 
    • ¿Quién es su Apoderado? Health Care Proxy  and Personal Directive(Living Will) in Spanish.
    • Translated Documents. Download a free Health Care Proxy in Portuguese, Vietnamese, Russian, Chinese (Traditional and Simplified),  Haitian-Creole, Albanian, Arabic, Khmer, Swahili, Nepali, Tagalog. Link

4.  TAKE ACTION: New Serious Illness Care-POLST Program 

  • NEW PROGRAM:  The State is taking steps to build a new Serious Illness Care-POLST Program (Portable Medical Orders). POLST is a medical form where a clinician and a seriously ill & frail patient talk about the patient's medical condition and treatments options. The patient chooses the care she/he wants and the clinician writes it down in a POLST form, which is honored across all care settings. The POLST form can protect against bias and help ensure your choices are honored. 
  • Let's Raise an Equal Consumer Stakeholder Voice to let the state and other stakeholders know what consumers want in order to build a trusted, equitable program. Our consumer group can help to:
    • Inform and guide program design;
    • Provider a greater understanding of the current barriers, broken systems and inequitable policies consumers face;
    • Suggest solutions for timely equitable care that honors a person's values and care choices all through the serious illness journey.
  • Read more... the Honoring Choices "Serious Illness MOLST Challenge", collaborating with our partners to make change, including: 
    •  MOLST to POLST Advisory Group, co-chair, MA Coalition for Serious Illness Care, to advise the State on a evidenced based sustainable POLST Program.
    •  Guardianship-Serious Illness MOLST-POLST Advisory  Group, co sponsor with MHA, to safeguard protections and improve the process for seriously ill adults under guardianship.

What's On Your Mind?  Come join us. Everyone is welcome. 

  • Individual consumers, consumer or patient groups and community advocates are very welcome —
    • Adults of all ages, races, cultures, genders, abilities and disabilities, family members, caregivers , anywhere you live, work and receive care.
    • Community advocates, health equity and  consumer groups. Let's build on your progress and promote your work.
  • No experience needed. Just a desire to make change.
  • We will meet via zoom and phone calls.
    • With the help of Advisory Group members, we'll distribute quick surveys on the common issues and goals to strengthen our consumer voice.

Contact Ellen at 781 642-0454, or send an email to Ellen at edipaola@honoringchoicesmass

Resources

 Here's some information and resources for consumers and care providers. There are many groups working on health equity and eliminating the barriers to getting good care.  Come join us! Let's strengthen our shared mission. We'll post your work here. Email to Ellen, edipaola@honoringchoicesmass.com

COVID-19 Digital Digest for MA and RI

MLPB, an Honoring Choices Alliance Partner, believes in the power of justice to advance health. Their Digital Digest is an impressive resource for MA & RI care teams who want to be more effective social need problem-solving partners with the people they serve. "The Digital Digest covers 10+ domains of health-related social needs (e.g., Housing, Food, Transportation, Immigration, Mental Health etc.)," says Samantha Morton, CEO, "with attention to key changes and what they mean for successful problem-solving."  View this unique, comprehensive resource here

Vaccine Equity Now!

Historical and contemporary experiences of racism and discrimination have led to higher levels of earned distrust in Black, Latinx, immigrant, and low income communities, and among people who are incarcerated. Vaccine Equity NOW! Coalition demands that Governor Baker take immediate action to prioritize access to the vaccine for the communities. Funds should be immediately dedicated to trusted community organizations to engage residents, provide accurate information, and address concerns. These organizations have trusting relationships and know how to reach and effectively engage residents.  Read more here

The petition can be found at: https://docs.google.com/forms/d/e/1FAIpQLSfxHq69D_Z2uTzZlNgpHtoqpoHWd-grjg3P_GnsyqZPonAQwA/viewform.

Become Antiracist. Acknowledge Bias.

Learn more about your personal journey to commit to being antiracist in all parts of your life, and making unbiased choices. Here are  great resources from the National Museum of African American History and Culture to explore:

Talking About Race

Video: How to be An Antiracist, by Ibram X. Kendi

Video: How To Overcome Your Bias, by Verna Myers

Who's Your Agent?   Make your own health care plan.  

3 steps of Whos Your Agent program
Every competent adult, 18yrs/older, can make a plan. You can do-it-yourself with the Getting Started Tool Kit. Help your family, friends and neighbors.

Start by choosing a Health Care Agent. Your Agent has the power to make health care decisions for you if you are unable to make decisions yourself. Your Agent can get you the care you need, even for a short while you recover. Be sure to mail or fax a copy of your completed documents to your Agent and primary care physician.

The Getting Started Tool Kit makes planning as easy as 1-2-3:

  1. Who's Your Agent?  Appoint a trusted person as your Health Care Agent in a MA Health Care Proxy.  No Agent? No Problem- start with Step 2;
  2. What Matters Most?  Write down your instructions for care in a MA Personal Directive (Living Will);
  3. Let's Talk About My Care. Talk with your clinicians, using the 5 Things to Talk About discussion guide, to get good care everyday.

Download a free The Getting Started Tool Kit

Download Translated Health Care Proxy & Personal Directive

¿Quién es su Apoderado? 

Choosing a Health Care Agent in a Health Care Proxy has never been more important to protect your right to get the care you want.  You can download free, translated documents in Spanish and other languages.  Bi-lingual care providers can offer culturally sensitive conversations and help adults translate their choices onto the English document. Both documents are valid and can be placed in the adult's electronic medical record so care providers know how to contact your Health Care Agent.

Here is a Health Care Proxy in 9 languages:

Español –  Spanish

Português –  Portuguese

Tiếng Việt –  Vietnamese

Kreyòl Ayisyen –  Haitian Creole

Русский –  Russian

繁體中文 –  Traditional Chinese

عربي –   Arabic

ភាសាខ្មែរ –  Khmer

Shqip -  Albanian

AlzHereForYou and 24/7 Helpline - Great resources from the Alzheimer's Association

 Alzheimer's Association logoIt's been a challenging time for individuals with Alzheimer's Disease and other dementias, and their family members and caregivers. Community health care professionals are working hard to help support all during the COVID-19 pandemic, made more difficult  by the loss of access to resources and closure of day programs.

Have a question or need help finding a resource?    Click on this link, AlzHereForYou to view a wide range of helpful resources. And be sure to call the 24/7 Helpline: 800.272.3900. Trained staff are there to help individuals, family members and caregivers, and also health care providers and community professionals find appropriate care and services.

24/7 Helpline: 800.272.3900

Talking about Dementia And Culture

Dementia Friends of MA recently hosted a Let’s Talk About Dementia and Culture: How We Talk and Teach About Dementia in Cultural and Linguistic Communities webinar. It was a far-reaching and timely discussion of disparities in the risk of developing dementia, and how we can learn from the values and wisdom of many cultural traditions.

You can access recording and multi-lingual tools here. 

 For more information, Contact Beth Soltzberg, Dementia Friends MA  at bsoltzberg@jfcsboston.org

Share A Meal: Community Food Banks

During this public health emergency,  adults in your town, city or community may not have a reliable healthy food source.  Here are some resources. Please call ahead to find our how each group is  distirubting food in your neighbohood.  For those who can, consider making a financial donation to your local food pantry or food bank.

  • State List of Local Food Banks. Link
  • The Greater Boston Food Bank. Link
  • Project Bread. Link
  • Boston Medical Center Food Bank. Link
  • The Greater Food Bank of Western MA. Link
  • Worcester County Food Bank. Link
  • Project Phoenix : A Food Hub Rises in Lynn. Greater Lynn Senior Services. Link.