Medical Home Meeting: September 9, 2015

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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

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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:

Medical Home Meeting: April 8, 2015

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On April 8, Marianne Beach welcomed us to the Medical Home Work Group as Dr. Sadof was out-of-town.  Ralph Poland was our first speaker.  He treated us to a convincing argument for encouraging families to consider SafetyNet by LoJack™.  SafetyNet is a radio frequency based system designed to aid in locating missing persons who suffer from a cognitive disorder such as dementia or autism.  For those of us in Western Massachusetts who have experienced the limitations of GPS, it is important to note that SafetyNet is NOT a GPS product.  Instead, you will be using a radio frequency transmitter (contained in a bracelet) and receiver.  The transmitter emits a radio frequency signal that is track-able by participating public safety agencies.  This system has been used successfully with dementia patients.

Ralph encouraged us to learn about Bill H.913:  An Act concerning the safety of autistic and alzheimer individuals. This bill was introduced to the legislation asking for the provision of insurance coverage for the use of electronic tracking devices to protect the safety of persons with Autism Spectrum Disorder or Alzheimer’s Disease.

For more information about this bill, take a look:

https://malegislature.gov/Bills/189/House/H913

If you would like to contact your legislators about this bill, please use this “Find a Legislator” website for street address, email address and phone numbers.

Next up was Jennifer Charbonneau from Pedi Pal speaking about options for special needs families in the Berkshires.  She explained that most families travel east for medical care (Springfield, Worcester, Boston) and may not know about services available to them closer to home.  Pedi Pal at HospiceCare in the Berkshires  provides palliative care to alleviate pain and provide support to children and their families. Jennifer emphasized that Pedi Pal is a holistic approach, offering emotional, physical, spiritual and social support. Their website states that palliative care may include complementary health services such as music therapy, reiki and other physician-approved therapies.

Our last speaker was Faith LaFayette from F.O.R. Families, serving 1400 Massachusetts families who are struggling with homelessness.  This home visiting program works with families to aid the transition from homelessness to stable permanent housing. Services are at no cost to participants.  Faith spoke about the difficulties faced by families living in hotels with special needs kids. The Massachusetts Department of Housing and Community Development is working to get families out of local hotels.

Our next meeting is Wed, May 12th from 9:15-10:30am.  We hope you will join us.

Now, to celebrate our beautiful May weather, let’s dance with some local folks at Whole Children: