Medical Home Meeting: November 12, 2014

Winter Fest at ShrinersIn November, we met to discuss emergency preparedness for our families.  Willie Spears, from the Springfield Fire Department, was on hand to take our questions and remind us of the steps necessary to help our families stay safe.  Our families need to know that FEMA takes 72 hours to get “boots on the ground” after a natural disaster.

Here is a link to the official FEMA brochure for people with disabilities.  Advice includes: 1) knowing what types of emergencies are likely to affect your region; 2) making a communication plan that includes your family, friends and service providers; 3) being ready to shelter-in-place (purchasing generators or portable batteries for life-sustaining medical equipment) AND/OR to evacuate quickly to a safer location; and 4) putting together an emergency kit that includes important documents and a way to access funds.

Many of our families are living in poverty.  Here is a news article that gives tips for building an emergency kit on a budget.

Our discussion opened up to the 911 Disability Indicator.   Please contact your local police or fire department to fill out this form.


You are required to complete this form if you want your police department, fire department, or other emergency agency to know about you when you call 9-1-1 in an emergency.

When your 9-1-1 call is answered at your local Public Safety Answering Point, the 9-1-1 system automatically displays your name, address and telephone number on the dispatcher’s screen.


At your request, codes will be displayed on the dispatcher’s screen that will identify the disability indicators that have been reported for you or someone living with you at your address.

These codes will help the dispatcher at the 9-1-1 Public Safety Answering Point to communicate with the caller and provide useful information to your responding public safety agency.

The information is confidential and will only appear at the dispatcher’s location when a 9-1-1 call originates from your address.

The information you provide for input to the 9-1-1 system will remain until you request a change or make a request to have it removed. It is your responsibility to notify your 9-1-1 Municipal Coordinator when there is a change in the information described on this form.

When there is a change, complete another form and send it to your 9-1-1 Municipal Coordinator.

If the disability indicator form is not completed properly, the information will not be entered into the 9-1-1 system.

Since 2005, Springfield has experienced a tornado and a hurricane, in addition to microbursts, Nor’easters, tropical storms and an inner city gas explosion.

After talking disasters, Carla Doyle from Community Resources for People with Autism gave us a refresher on the Autism Waiver Program, funding wrap-around services for 80 families in Massachusetts.  The deadline has passed, but this is an annual opportunity.  Tell your families to re-apply every year.

Dr. Sadof (@MDSadof) reminded everyone about his care coordination grant. Families should inquire at the Baystate Children’s Specialty Center.  

Tonight (Dec 2, 2014) is our Winter Wonderland Festival.  We are welcoming families from 4:30-6:30pm at Shriners Hospital for Children, 516 Carew St in Springfield, MA.  Please contact Jane O’Brien at (413) 794-2085 with any questions.  This event is sponsored by the Medical Home Work Group and Thom WRCP.

Medical Home Meeting: October 8, 2014

Our October meeting was a time to put faces to names as Lori Bosak & Maureen Maiuri from the Center for Health Care Financing spoke about Enhanced Coordination of Benefits (ECOB).  Lori had several fans in the room, and she was happy to meet people face-to-face.


The ECOB Unit is administered by the University of Masschusetts Medical School to provide benefit coordination to MassHealth members.  In plain language, this means that Lori (and other coordinators across the state) will work with a family’s existing private health insurance as well as MassHealth to get the greatest amount of coverage possible.  Lori stated that she works to help “the sickest of the sick”–children with complex medical needs who are high utilizers of health care services.  She helps families understand their MassHealth benefits and seeks to relieve their burdens by taking on battles with insurance companies.

MassHealth will help pay for private insurance premiums.  “Don’t let anyone tell you otherwise,” says Lori.  Massachusetts law requires that MassHealth members obtain any available group insurance.  She helps families enroll in available employee health insurance and will explore the possibility of COBRA benefits for dependents who are aging out of their parents’ plans.   ECOB will provide premium assistance for private insurance, including COBRA.  For families with complex medical needs, it is more cost-efficient for the Commonwealth of Massachusetts to make payments for COBRA coverage than to pick up the tab for medical expenses.

Lori urges families to contact her for assistance.  She knows that insurance claims get “lost” or are denied.  Lori works diligently to resolve any issues between families, their private insurance companies, their employers and MassHealth.  No wonder she has fans!

After the ECOB presentation, Dr. Sadof (@MDSadof) gave an update on his care coordination grant.  We were reminded of the upcoming Winter Wonderland Festival, to be held on Tue, Dec 2 from 4:30-6:30pm at Shriners Hospital for Children, 516 Carew St in Springfield, MA.  To donate your time, money or gifts, please contact Jane O’Brien at (413) 794-2085.  This event is sponsored by the Medical Home Work Group and Thom WRCP.

Medical Home Meeting: September 10, 2014


Dr. Matt Sadof (@MDSadof) launched our new season of meetings. We were nearly at “standing room only”.  We are amazed to see attendance rising with each year.

Dr. Sadof began by announcing good news.  Baystate Health recently received major funding from the Massachusetts Alliance for Coordinated Care.  Dr. Jack Maypole, from Boston Medical Center, is a co-investigator of a research project to develop a secure, individualized cloud-based method to record health care plans for families with medically complex children.  In addition to developing a mobile care plan, this grant will support the assignment of care coordinators, nutritionists, family navigators and other support staff to the enrolled families.  Care coordination is a critical part of the medical home concept.

After this announcement, our discussion turned to parents’ self-care.  Area events that are designed to give parents a night out (including massages, manicures, and chocolate fountains!) are poorly attended.  How can we encourage these loving caregivers to take a break?

The program continued with Doug McCallum taking the floor.  Doug is the Central/Western Regional Director of Family Support for the Massachusetts Department of Developmental Services.  He delivered a lively talk on DDS.  He reviewed eligibility guidelines, and talked about the expanded allowances for children with Pervasive Developmental Disorders (autism spectrum), as well as Prader-Willi and Smith-Magenis Syndromes.

Doug talked about the devastating cuts to Family Support in 2009, and the struggle to rebuild services.  Now, DDS is expanding services without a promise of additional funding.  He emphasized the importance of facilitating family-to-family sharing.  This work is done at the nine Family Support Centers in Western Massachusetts. For more information, check out

DDS, in partnership with Massachusetts Families Organizing for Change, offers a Family Leadership Program

The MFOFC Family Leadership Series has a two-fold purpose. The first is to offer information about “best practices” for people with disabilities. The second is to assist families in creating a vision for their family member and a process to achieve the vision by incorporating that information.

Throughout the morning, Doug treated us to a full serving of DDS alphabet soup:  (FSC, IFFS, DESE/DDS, AWP).  For more information about these DDS programs, check out the website.  

Mark your calendars!  Our Winter Fest will take place on Tue, Dec 2, 2014, from 4:30-6:30pm at the Shriners Hospital for Children, 516 Carew St., Springfield, MA.