Medical Home Meeting: November 8, 2016

Thank you for your patience as we get acquainted to blogging for the Medical Home Meeting, as the wonderful Margot Malachowski has handed over the torch.  We want to thank Margot for her great work and assistance with coordinating and keeping up with the social media piece of the Medical Home Meeting.  In addition, we are very sad to announce that this year we will not be holding the Medical Home Group Holiday party.  We wish everyone a great holiday and hope to revisit this tradition in the future.

On November 8, 2016 we had Caitlin Thomas, SSI Advocate, share wonderful information with the group.  She presented a great slideshow and tips when engaging in the process of applying for SSI and SSDI.  She encouraged providers and parents to contact her via e-mail and/or phone if they had any questions/concerns as she would gladly assist. Caitlin shared an abundance of information but some key points were: know the language and abbreviations used by the Claims Representative and bring documents in directly as fax can get backed up to two weeks.  The slideshow and Caitlin’s contact information are in this link- Information regarding SSI.

Our next meeting is Tuesday, December 13, from 9:15am-10:30am at Shriners.

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:

Medical Home Meeting: May 11, 2016

We welcomed 40 people to our May meeting. Dr. Sadof gave a brief update on staff changes at Baystate’s Pediatric Neurology and Pediatric Pulmonology practices. He stated that the ultimate goal is to keep care local. For the immediate future, primary care providers will write prescriptions for stable patients, and each family will have care plans that include specialists in Boston, Worcester or Hartford. We understand that a 2-hour drive in the car is very hard on kids with medical complexities. Dr. Sadof stated that the drive itself will wipe out a kid.

In other updates, the group heard from 4-C’s Eric Volz-Benoit that the Massachusetts Early Intervention conference was excellent.

Jesse Hagerman, Manager of the Child Life Program at Baystate Children’s Hospital, and Deb Levine, LICSW at Baystate Medical Center, talked to the group about efforts to reduce any trauma that hospitalization has on a family.  We know that some children experience many hospitalizations. The Child Life Program addresses the impact on the patient, as well as siblings, parents and other caregivers. Child Life provides age-appropriate explanations of hospital procedures, and guides families through expressing their emotions through play therapy, music therapy, and doll play. Therapists consider the unique needs of each child and family. Jesse affirmed that the Child Life Program teaches life-long skills in coping with trauma.

Our second speaker was Shelly Bathe-Lenn from The Garden, A Center for Grieving Children & Teens. The Garden helps families cope with death, no matter how long ago the death occurred. Schools identify families who have experienced death, and contacts The Garden. The Garden offers free support through group healing activities. Group meetings start with an all-ages healing circle, and moves onto healing activities for specific age groups. The Garden does not provide individual therapy, focusing instead on the shared experience of loss. Here is a story about one woman’s experience. The Garden will visit schools for group work with kids.

Shelly recommends The Dead Bird, by Margaret Wise Brown, as a sympathetic but unflinching children’s book about death.

The 4-C program announced a Luau for families and health care providers, to be held on Thu, June 23, 4-7pm at UMass Springfield, 1500 Main St. Join us!

Our next meeting is Wed, June 8, from 9:15-10:30am at Shriners. Please remember that we have no meetings in July & August.