Medical Home Meeting: April 8, 2015

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:

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: 


Medical Home Meeting: March 11, 2015

On March 11, we welcomed 40 attendees to our monthly meeting.  Our guest speakers were Doug McCallum (DDS Director of Family Support, Central/West Region), Doreen Boyer and Stephanie Baldwin (DDS Transition staff, Franklin -Hampshire Area Office), and Arlene Lockenwitz (Family Bridges Program).   Our discussion started with the acknowledgement that, in the past, children with medical fragility did not survive until adulthood.  Now many do survive, and we are developing systems to assist families. Unfortunately, the process is not always smooth.

Family Bridges supports families coping with complex medical needs, enabling  home care for children. Family Bridges provides a LOT of handholding during the guardianship process.  Arlene told us that the “attorney of the day” in Massachusetts Probate Courts will provide assistance to anyone who needs help filing guardianship paperwork.  She knows this happens in Franklin County.

When your families seek DDS services, help them understand that DDS prioritizes needs for children transitioning to adult care.  Health and safety comes first when deciding funding for day or residential options.

Doreen and Stephanie, from the Transition staff, told us to discourage families from allowing their children to graduate before age 22.  A child might have enough credits and adequate MCAS scores, but graduating from high school leads to loss of services.  Be aware that filing Form 688 starts the process towards graduation.  At age 22, DDS service is no longer an entitlement.

In preparation for Transition, DDS Family Support Services helps families through the social security process.  DDS helps families “rebuild their team” with applications for services such as PCAs, adult family care, school habilitation and sheltered employment. Find family support resources here.

Member announcements:

Massachusetts DPH is distributing a confidential survey.  Families will have the opportunity to enter a raffle for $50 gift cards.  Encourage your families to participate!

Check out the PVTA to learn more about special needs transit in Western MA.

Changes are coming for intellectual disability eligibility. Check here for current guidelines. is offering comprehensive training for parent consultants.  They are hosting a springtime training in Belchertown.  

Centrus is expanding their territory to serve more special needs families in Western MA.

Our next meeting will be on Wed, April 11 from 9:15-10:30 am.

Here’s a shout-out to The Arc.  A beautiful story about an artist:

Medical Home Meeting: February 11, 2015

About 30 folks attended our February meeting.  Magda Rodriguez, from Safe Kids of Western MA, spoke first about about keeping kids safe.  For 20 years, Baystate Children’s Hospital has supported Safe Kids in our region.  Magda opened her talk by observing that all kids get bumps & bruises.  Safe Kids focuses on preventing serious injuries.  Magda talked about innovative programming, such as “Kids Can’t Fly” falls prevention, “Be Safe, Be Seen” Halloween safety, and the “Not Even for a Minute” campaign to teach families about the dangers of leaving kids in hot cars.  Safe Kids is best known for car seat and bike helmet programs.  Magda will help families search for appropriate car seats for special needs kids.  The Safe Kids Coalition meets on the first Monday of every month at 11am.  For more information about the coalition, or to learn more about home injury prevention, check out Safe Kids of Western MA. Our second speaker was Maria Burke of WillPower Foundation and JERICHO.  WillPower provides financial support to special needs families who are struggling to meet their children’s needs.  WillPower grants up to $500/family to pay for mobility/sensory equipment, therapies, evaluations, special programs (summer camp)–items and services that are not covered by insurance or other programs. They have distributed  $112,000 to Western MA families. All money is locally generated and distributed. This foundation was named for Maria’s son Will, who learned to walk with assistance received from Shriners Hospital. Here’s a wonderful thank-you from one child who received funds:

Maria talked about JERICHO, a Catholic organization that serves all families with special needs kids.  They have offered programs on their beautiful campus in Holyoke, MA for the last 43 years.  JERICHO hopes to develop a web portal for information to help local families. During announcements, we learned that Loving Care Agency was purchase by EPIC and plans to put more focus into serving medically fragile children. Our next meeting is on Wed, March 11th, 9:15-10:30am.  We will be discussing Transition from the DDS Perspective with: Doug McCallum, DDS Director of Family Support, Central/West region Doreen Boyer & Stephanie Baldwin  DDS transition staff, Franklin -Hampshire Area Office Arlene Lockenwitz, Parent, Family Bridges Program Join us!