Medical Home Meeting: June 8, 2016

Our June meeting opened with a reminder that next year’s meetings will be held on the second Tuesday of the month, NOT the second Wednesday. Please mark your calendars for Tuesday, September 13, 2016!

Ingrid Flory of Massachusetts Families Organizing for Change (MFOFC) spoke with 35 meeting attendees about MFOFC’s work to help families envisioning better outcomes for themselves.  MFOFC is a statewide, grassroots coalition of individuals with disabilities and/or chronic illnesses and their families.  In the Family Leadership Series, MFOFC teaches families how to advocate for legislative change.   As Ingrid talked about this Series, many attendees at our meeting spoke up to vouch for this program.  MFOFC works toward strengthening statewide supports so that our loved ones can live safely in the community.  They monitor  what is happening with Chapter 171 , an Act providing support to individuals with disabilities and their families that was passed by the Massachusetts Legislature in 2002. MFOFC knows that many Massachusetts legislators don’t live our lives, so they show up to make sure that the legislators hear about what is important to our families.

The Family Leadership Series is a two-day program.  Food and overnight lodging for each family is paid for by the Department of Developmental Services and other state agencies, organizations and businesses. Respite/child care/nursing for family members is arranged on an as needed basis.  The Full Life Ahead Workshop helps families envision a better future for themselves  Topics include friendships, transition, employment, housing and financial planning.

In the second half of our meeting, Lori Bosak from Center for Health Care Financing spoke to us about making the most of insurance benefits.  Lori visited us in October 2014 and shared with us again how Enhanced Coordination of Benefits (ECOB) works to coordinate private insurance and MassHealth benefits for frequent users of high cost medical care.  ECOB coordinators advocate for families, and will investigate insurance termination.  Lori is down-to-earth and realistic about the pressures that families face.  Coordinators will talk with employers, pharmacists… anyone that families are interacting with over insurance concerns.  A really wonderful service!

Our next meeting is Tue, Sept 13, from 9:15-10:30am at Shriners. Please remember that we have no meetings in July & August.

Here’s a sweet video with a great recommendation for Summer Reading:

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Medical Home Meeting: October 14, 2015

Our October meeting opened with a reminder about our Winter Wonderland event, scheduled for Tuesday, December 1 from 4:00-7:00pm at the Shriners Hospital for Children in Springfield, MA.  We plan to host over 100 family members.  We are accepting all sizes and types of donations. Every gift helps make the event more inclusive and successful. Because we have no budget, we only offer this event through the dedication and kindness of our volunteers.

Monetary donations can be sent to:  Karen Cassidy at THOM Regional Consultation Program, 1506A Allen St., Springfield, MA 01118.  If you would like to volunteer or set up a table at the program please let Karen know. There are a limited number of tables available on a first come, first serve basis.

Our meeting continued with a description of THOM’s “Let’s Get Organized” strategies for families.  One strategy is to collect business cards from all of the families’ helpers.  Some families are collecting business cards by taking photos with their phones.  Adding a description of the helper (hair color, glasses, etc) helps the family remember who is who.  The reality is that families lose track of who they’ve seen, what agencies have visited their homes, and who they like (or don’t).

Next up, Maria Zygmont and Madeline Johnson shared info about Brightside for Families and Children.  Brightside was founded in 1881 by the Sisters of Providence as Mount Saint Vincent Orphanage in West Springfield.  This institution has evolved from the early days as an orphanage to a temporary residence for children in need.  In 1968, Brightside for Families and Children was chartered as a private, non-profit corporation.  In the last fifteen years, Brightside’s Residential and Day School Program closed, but the Family Support Programs and Services continue through their offices at Providence Behavioral Health Hospital in Holyoke, MA.

Brightside participates in the Children’s Behavioral Health Initiative. Madeline Johnson spoke earnestly about programs that teach children important communication skills, with goals of helping them participate more fully in social contexts.

Our last speaker was Jan Lamberg with The Support Network.  Jan coaches families in how to approach schools when advocating for their children’s needs.  She spoke about the critical need for documenting interactions with the school.  The Support Network offers sample letters for parents requesting educational evaluations.  Please contact Jan through The Support Network for sample letters.

Our next meeting is on Wednesday, Nov 11 (Veteran’s Day!)

To get a little local history, check out this video: