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.

Medical Home Meeting: May 13, 2015

We had a beautiful, breezy spring day for our May 13th meeting.  We opened with an announcement for Family Fun Night at Weldon Rehab, held on June 2.  We hope there was a good turnout for this event.  Health fair season is upon us.  Encourage your families to get out and learn about support services!

Jane O’Brien is providing care coordination at the Baystate Children’s Specialty Center on 50 Wason Ave in Springfield.  The Pediatric Ambulatory Care Coordination program (PACC) supports families by arranging for timely appointments with a child’s specialists, handling insurance paperwork and approvals, facilitating communication between the pediatrician, specialists and the family, and arranging follow-up care if a child is admitted to the hospital.

After Jane spoke, we had some discussion about registering complaints for PT 1 services.  Several people talked about the differences between medical transport and ADA transport.  PT 1 services are free while ADA services come with a small cost.  The advantage to ADA services is that it is easier to get approved.  PVTA is encouraging everyone to take regular transport.  Families need to prove that there are barriers to taking a bus.  For example, poor sidewalks or having a parent with a disability are reasons why a family might need PT 1 or ADA service.  If your families have appointments at Shriners, they qualify for free transport.  The general consensus was that we should address transportation issues in our 2015-2016 series of meetings.

Myra Camilleri-Erlynne spoke about services available through Baystate Developmental Behavioral Pediatrics. This practice does evaluations and testing for global developmental delays, co-morbidities with psycho-sensory disorders, ADHD, autism, and learning disabilities.  The Growth and Nutrition Clinic evaluates children from 0-6 years old for feeding disorders.  Families are supported by a developmental pediatrician, a nutritionist and an occupational therapist.

Myra’s presentation sparked a conversation about insurance coverage for pediatric neuro-psych testing.  If a child is not experiencing seizures or similar incidents, insurance may be denied for testing.  In general, there are large gaps in pediatric behavioral health services, especially in the Ware area and in the Berkshires.

Our last presentation was from local nurse and dad of two special needs kids, Eric Volz-Benoit.  Eric works for Centrus Home Care and is participating in a leadership program.  He is hoping to start an “Operation House Call” type of program in Western Massachusetts.  Operation House Call is a partnership between The Arc of Massachusetts and medical/nursing schools.  The goal is to help health care providers gain confidence and skill in treating medically complex children by exposing them to the home life of our families.  This is a win-win situation, as increasing the knowledge of health care providers will help parents relax and have confidence in treatment plans.

Our last meeting of the year is Wed, June 10 from 9:15-10:30am.  See you there!

Here’s the magical story of Baystate Children’s Specialty Pediatrics: