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:

Medical Home Meeting: September 9, 2015

We launched our 2015-2016 season with updates on the 4-C Program from Matt Sadof, MD. The 4-C (aka “cuatro c”) Program serves families with special needs children.  Please check out this Boston Globe article for a brief introduction to the program.

Under the plan, [Dr. John S.] Maypole [of Boston Medical Center] and Dr. Matthew D. Sadof of Baystate will serve as consultants to community pediatricians on how to care for children with complex issues. The children will stay with their current pediatricians, but will come to BMC or Baystate to be assessed and to develop a care plan. The alliance will also provide the back-up services of nurses, social workers, nutritionists, and navigators.

The foremost goal is to provide families with companionship on a difficult journey. Dr. Sadof credits the Medical Home Work Group meetings as the generator of this goal. This group began in 2003, and continues to gather together healthcare providers, community agencies and families to share information on options for children with special healthcare needs. Every month, we learn from each other as we discuss the complexities resulting from trying to meet the many needs of children and families.

The 4-C program is interested in all aspects of a child’s life.  Where does the child live?  Are there any concerns about safety or accessibility of the home?  Concerns about food and nutrition?  With whom does the child live?  Do the caregivers get respite care (big problem in Western MA)?  Who does the child see for medical care?  Where is the child attending school?  How does the child travel? Modified vehicles, public transportation?  Is the transportation reliable?  What does the child need EVERY DAY?

Our group launched into discussions about lack of respite care, problems with transportation, and the cycle of claims-denials-appeals that families experience when applying for assistance.  Dr.Sadof asked for input about the 4-C care plan. This is an ongoing conversation,and we encourage you to contribute!

Our next meeting is Wed, Oct 14th.  We will be planning our Winter Wonderland event, scheduled for Tue, Dec 1 at Shriners.  No one wants to think about winter yet, so here’s to staying in the moment!  Let’s support opportunity.  Check out this public service announcement from the Campaign for Disability Employment.

“Who I Am” (60 seconds, audio introduced) from CDE: What Can You Do? on Vimeo.