Medical Home Meeting: February 10, 2016

In our February meeting, Marianne Beach gave a thorough presentation on “Understanding Services and Benefits for Children and Youth with Special Needs.” She explained the framework of the Massachusetts Department of Public Health’s Title V Children and Youth with Special Health Needs (CYSHN) Program, and listed these priorities:

  • Promote Medical Home
  • Support Youth Transition
  • Infuse Cultural Competence
  • Address Health Disparities
  • Insure Key Role for Families

These priorities demonstrate MDPH’s commitment to family-centered care. Marianne talked about the Community Support Line, which provides information and referrals for families.  The Community Support Line informs families about eligibility for state & community-based resources, and makes referrals to services such as Social Security, CommonHealth, MassHealth and many others. Marianne reported that most calls to the MDPH Community Support Line are from families living with autism. Please share this number with your families: 1-800-882-1435.

MDPH provides three levels of care for families: Information & Referral, Intermediate Care, and Intensive Care Coordination. Intensive Care Coordination assists families dealing with multiple medical diagnoses or a single severe diagnosis. Massachusetts has nine Pediatric Palliative Care Networks for 0-19 yrs old with life-limiting diagnoses. Baystate Health Pediatric Palliative Care provides services for families in Western Massachusetts. Our group recognizes that families in Western Massachusetts lack sufficient locations for respite care. Families need to travel for several hours to get respite care.

Marianne highlighted a couple of programs.  MASSSTART is a program that teaches school nurses about the medical technology used by  kids with medical complexities. The Catastrophic Illness in Children Relief Fund helps families with excessive financial burdens.  Family TIES of Massachusetts provides family-to-family support. As the website states, ” just like you, we are caring for our children and aim to light your way.

After the meeting, Eric Volz-Benoit shared this link  to a video story about Operation House Call out in the Eastern part of the state.  We are hoping that Baystate Health will adopt this model of medical training.

Our next meeting is on Wed, March 9th from 9:15-10:30am at the Shriners Hospital. See you there!

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: